tag:blogger.com,1999:blog-73852859739191248312024-03-24T03:10:13.020-04:00Laughing from my sickbed...irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.comBlogger248125tag:blogger.com,1999:blog-7385285973919124831.post-72277442241311605362014-01-31T14:50:00.000-05:002014-01-31T15:07:25.255-05:00Month in Review...<div class="separator" style="clear: both; text-align: center;">
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<b><i><span style="font-family: Trebuchet MS, sans-serif;">St. Louis' Record Blizzard of 1982, snowed in for a week!</span></i></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I hate to sound like the old fogie that I am, but really, where has January gone? It's been an eventful month. In fact, s</span><span style="font-family: 'Trebuchet MS', sans-serif;">o eventful that I've barely blogged. (Eye roll!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I came down with bronchitis this past week. Now I'm on antibiotics and strict bed rest. I'm a bit grumpy because I had so hoped to start in on trying to declutter the house. Darn it! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">However, I'm thrilled I got that pneumonia vaccine last year. (And no, I don't get the flu shot, in case anyone wonders.) I've had three occasions when my bronchitis turned into near-fatal cases of pneumonia, hence the vaccine many years ago. My last bout of kinda-weak pneumonia last year reminded me that it was time for another pneumonia vaccine. Thus far, fingers crossed that the bronchitis doesn't go any further. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">My rheumy had warned me that I probably wasn't ready to get that colonoscopy I talked about in a previous <a href="http://laughingfrommysickbed.blogspot.com/2014/01/cookbook-medicine-really.html"><b><i>post about "Cookbook Medicine</i></b>."</a> Yes, the prep was easy (for me! we're all different!) but the aftermath was awful. I already had the shakes and shivers to an alarming degree and they've gotten worse. Now I'm adding the word "vibrating." My whole body feels as if it's vibrating and that the house is shaking. I have huge sweats, run fever then shiver: often it feels like what I imagine malaria feels like. My mouth gets full of bumps and ulcers. When I mentioned this to my rheumy and said I hadn't heard of anything about the after-effects, he started laughing and said, "Irene, they don't see the after-effects.<i><b> I</b></i> do!" Yes, he was right. I probably did go in for that colonoscopy when I was still too weak from all those hospitalizations and ER runs in the fall, but I'm glad we can cross a problem with my colon off my list of red herrings.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Continuing along: as always in January, our movie-obsessed family has been following the award shows and we look forward to the Oscars, which won't be telecast until March this year. Hey! One of the only ways I get through the holiday season is because I know that the Oscars will soon follow. You know: it's the dangling carrot.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I've seen one movie which really and truly moved me. I'd never heard of it before, but after watching it, I couldn't stop thinking about it. It's <i><b>Dallas Buyer's Club</b></i> and I think that anyone who has a chronic illness, which no one understands, will find the movie especially fascinating and on many levels. Had I not seen it, I'd have thought all the accolades and awards which Matthew McConaughey has received thus far were because he'd lost so much weight to play the role. I'd have been wrong. He was incredible in the part. Jared Leto hands in a marvelous and multi-layered performance. The script, story and writing is amazing. Need I say more? Don't make me: I want you to be pleasantly surprised. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Notably for me: I became a grandmother, finally! (Excuse me as I do the happy dance - in my head, silly!) To say we're delighted is an understatement. After a very rocky few months, Baby Aiden was born. Once he arrived home yesterday, and after a good quick nap by babe, mum and dad, hubs and I got to talk to Baby Aiden via Skype. He's a nice, quiet baby - as long as he's not hungry and is not cold. But a funny thing happened. Whenever he's uncovered he starts to cry. But once I started talking to him, he would quiet down. I hadn't noticed it, but my son had. And - jumping for joy - my son was right. Each time I stopped talking to the baby he'd start crying again. My, my! Aren't I the won-over Babushka! </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I did read a book this month that I really enjoyed and wanted to pass along the title. It's Fanny Flagg's <b><i><a href="http://www.amazon.com/All-Girl-Filling-Stations-Last-Reunion/dp/1400065941/ref=tmm_hrd_title_0?ie=UTF8&qid=1391140839&sr=1-1">The All-Girl Filling Station's Last Reunion: A Novel</a>.</i></b> I think it's her best book since<i> <b>Fried Green Tomatoes</b>.</i> The best part may perhaps be that it's a very easy read for those of us who have a hard time concentrating - or remembering - because of brain-fog. The story is involved but in a slow, sweet ice tea way on a hot summer day. You know how the outside of the glass gets iced and as your hand melts the frosty outside, the water streams down, zig-zaggy? There's heartbreak but there are laughs, just like life. I'm not going to tell you what it's about. Just check it out. I don't think many will regret reading it. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">And I guess that's a wrap for January.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone is feeling their best - only better. Ciao and paka! </span><br />
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<i><b><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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<br />irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com64tag:blogger.com,1999:blog-7385285973919124831.post-3278644020921401912014-01-31T00:01:00.001-05:002014-01-31T09:06:00.741-05:00Friday Tidbits: The Real Reason Rheumys May Not Want to Treat You<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTkAYXQacZghmEX2dLxQX-Efp_t77lzd_aGHtUdbNyrk4gYkB3IszwivW8czN5sJl2kdTpJZn63ONQi7V5Z9e2XwY1_kdiX66Mjnq2ouH5REWms4mKCkYwMUZLl_Ou0BZWv8qTb4uK0wc/s1600/IMG_4879.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTkAYXQacZghmEX2dLxQX-Efp_t77lzd_aGHtUdbNyrk4gYkB3IszwivW8czN5sJl2kdTpJZn63ONQi7V5Z9e2XwY1_kdiX66Mjnq2ouH5REWms4mKCkYwMUZLl_Ou0BZWv8qTb4uK0wc/s1600/IMG_4879.JPG" /></a></div><span style="font-family: Trebuchet MS, sans-serif;"><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">This is part two of the discussion in my last post, "<i><a href="http://laughingfrommysickbed.blogspot.com/2014/01/the-role-of-rheumy-in-treating-cfsme.html"><b>The Role of the Rheumy Treating CFS/ME, Fibro and Other Sundries</b></a>." </i> It started as an answer to a question by a reader who wanted to know why her rheumatologist won't treat her. She has ME/CFS and fibromyalgia and since she doesn't have a disease which is of an "inflammatory nature," a connective tissue disease like lupus or rheumatoid arthritis (RA), instead has fibromyalgia, he isn't going to continue treating her.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Rheumatologists differ, of course, in what "interests" them and what sort of patients they want to treat - that is, as to what their main interests are within their specialty. In many ways, diseases like lupus and RA are easier to understand and treat, especially since there are useful guidelines and objective markers to go by. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Now before anyone starts "yelling" at me, please hear what I'm saying. (Yes, I can hear the roar!) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I'm<i> not </i>in any way saying that lupus or RA are less dangerous, but that they are less <i>frustrating</i> for the doctor to treat. Lupus and RA are<i> extremely</i> dangerous and even fatal, make no mistake. I'm talking about access to a specialist so that fibro patients can be afforded the same opportunity and the same respect as other patients. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And on a personal note, let me make it clear that when my rheumy did his fellowship in rheumatology, his mentor was one of the most leading experts in the world in lupus, if not <i>THE</i> best. The university had even asked her to "charm" him into coming to that program. So, lupus people, please don't get mad at me! ;)</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Basically, the reader was sent away from the rheumatologist who should have taken the time to treat her distressing and life-altering problems instead of kicking her to the curb. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">So to get to the matter at hand as to why a rheumatologist wouldn't want to treat fibromyalgia?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">There's a big old elephant in the rheumatology world which too many rheumatologists are trying to ignore. Why? Well, it's a bit complicated and it's a truth that I don't think many want to hear, much less discuss. Yes, I do realize that I've named this blog "laughing from my sickbed," and yet I end up writing about perhaps too many non-laughing issues, but I seriously think that there are certain topics which should be looked at realistically. Not gloom and doom. Simply realistically and honestly.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">To give you an idea of how rheumatologists have become disillusioned with their creation, namely, the legitimization of the diagnosis of fibromyalgia as a distinct medical entity, I'd like to relate a story my rheumy told me ages ago. I checked with him again today for the details so I've got it "right from the horse's mouth," you might say. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">At an annual meeting at the College of Rheumatology, over a decade ago, my rheumy, who regularly lectured and gave poster presentations, was standing in front of his poster in the exhibit area of the convention center. A well-respected colleague walked by and instead of greeting my rheumy, whom he had known for many years, with a jovial greeting, he pointed to the word, "fibromyalgia," in the title and exclaimed, "I <i><b>HATE</b></i> those patients!"</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Taken aback, my rheumy asked, "How can you hate your patients?" </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">My rheumy had been on the committee, after all, which had spent three years establishing the criteria for fibromyalgia. He had pretty much gotten used to local doctors not believing in the concept of fibro. At a party, for example, a plastic surgeon who'd had a bit too much to drink asked him once, "So, just between you and me, do you really believe in this fi -fi- fi- oh you know, that sh*t? Or are you just trying to make a lot of money?"</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">But to hear this by a respected rheumatologist, at an annual meeting of the College of Rheumatology, was a shocker. This was especially shocking since my rheumy always felt that if he had to send a family member to see another rheumy, this man would have been him!</span><br />
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</span> <br />
<blockquote class="tr_bq"><i><b><span style="color: #444444; font-family: Trebuchet MS, sans-serif;">It then dawned on my rheumy to ask yet another question. He said, "If your fibromyalgia patients had all the time they needed to describe their problems to you and you could take all the time you needed to do a proper evaluation and treatment plan AND you were paid fairly for your time, would you still hate those patients?"</span></b></i></blockquote><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">The doctor stepped back and thought about it for a moment. This was something he'd never considered before: that is, being fully reimbursed for his time. What a novel idea!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">He then said, he would <i>NOT</i> hate "those" patients under the circumstances. </span><br />
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</span> <br />
<blockquote class="tr_bq"><span style="color: #444444; font-family: Trebuchet MS, sans-serif;"><i><b>Thus, my rheumy pointed out to him, it wasn't the patients who were the problem. The problem was that the system which forced doctors to spend little time with their patients and a system which did not reimburse the doctor fairly for his time and expertise - THAT was at fault.</b></i></span></blockquote><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Is it any wonder that pain specialists often prefer to do procedures such as epidural steroid injections and facet blocks (which are reimbursed handsomely) rather than prescribe oral medication after a lengthy history and examination (cognitive skills that are reimbursed poorly)? In order to survive, doctors have to turn a profit. After all, they have expenses and they also need to put food on their table and keep the proverbial roof over their heads.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">My rheumy went on to diplomatically tell me that fibro patients are considered undesirable by many doctors, including rheumatologists - an irony since fibro patients are now disliked for the very reason they used to be "liked": they were what the "thinking doctors" used to love, intellectual challenges. Actually, (and this is me speaking, not my rheumy) there is a well-known adage: the best doctors are internists and the smartest internists are rheumatologists. And internists think, whereas most other specialties all too often have a cookbook mentality.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">When my rheumy was in training, the complicated and unusual patients were sought after because they were challenging and intellectually stimulating. Sadly, for many doctors this is no longer the case. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">The third-party payer system punishes doctors who think outside the box, who follow hunches that often result in brilliant diagnoses, and who spend a lot of time with each patient, all because the reimbursement paradigm is heavily weighted towards procedures, as opposed to cognitive skills. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">So, don't be surprised if your doctor takes on only one or two problems in your visit. He/she probably doesn't have the time to explore all of your problems during that encounter. That doesn't mean it's right to have such a small period of time with your doctor, but this is the reality if you expect your third-party payer to defray the cost of the visit.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">What to do? I think we all know, but I'll repeat it in order to complete my thoughts:</span><br />
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<ul><li><span style="font-family: Trebuchet MS, sans-serif;">Because of the time factor, prepare for your visit by writing down specific problems which are the most urgent at the time, knowing that your doctor will probably have allotted only enough time to hit the highlights during your visit. </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Be as specific as possible and try not to go on tangents when discussing major issues that are of major concern. (That's rich: <i>me</i> advising <i>you</i> to not go on tangents!)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">If you stay focused, chances are you will get a lot more out of the visit and your doctor won't dread the follow-up visit. </span></li>
</ul><div><span style="font-family: Trebuchet MS, sans-serif;">You may notice that I've not included ME/CFS in this discussion. Why? Because the sad part of this narrative is that The American College of Rheumatology claimed ownership of fibromyalgia when they established the criteria of fibromyalgia in 1990. Now it seems that they want to distance themselves as far away as possible from fibromyalgia. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">As for poor old ME/CFS? That's for another posting. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
As always, I hope everyone's doing their very best - only better! Ciao and paka.</span><br />
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<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i></div><div><br />
</div>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com17tag:blogger.com,1999:blog-7385285973919124831.post-54348868037706738512014-01-30T14:41:00.001-05:002014-01-30T15:03:30.963-05:00The Role of the Rheumy in Treating CFS/ME, Fibro & Other Sundries<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdH8_qAxjmnFtf1HK0WMgQre8dsKQa7XY7fvFUwfqDy_1aIDHxcZBFytcKei87nUASmnpM_UpW1ZpS3onsQ6Ew6l1ikY4Bwof83mGuaDgiZG8GNZMRSORLU34Gqs4xBcdH7v6m96z3dcc/s1600/032.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdH8_qAxjmnFtf1HK0WMgQre8dsKQa7XY7fvFUwfqDy_1aIDHxcZBFytcKei87nUASmnpM_UpW1ZpS3onsQ6Ew6l1ikY4Bwof83mGuaDgiZG8GNZMRSORLU34Gqs4xBcdH7v6m96z3dcc/s1600/032.JPG" height="320" width="283" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">It was The American Academy of Rheumatology which set the criteria for fibromyalgia and used "The Three Graces" when they introduced the fibromyalgia tender points!</span></b></i></td></tr>
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<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Last night a reader left a comment on one of my posts asking me about my rheumatologist and what he treats me for. She wondered if I would mind letting her know what, indeed, my rheumy addressed in terms of my health. And how sweet: she asked ever so nicely, wondering if she could "impose" on me. She also mentioned that because she doesn't have diseases "inflammatory in nature," her rheumatologist said that he/she wouldn't see her anymore. </span><br />
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">I slept on this reader's comment (for a whole two hours) and decided that there are two big things in play here. Today I'll address the first part and my next post will be the other "thing" in play. Teaser: it's controversial, but it's the truth. </span><br />
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<br />
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Before I get carried away, let me say that I love readers asking me questions - often just because it gives me a topic to write about, true - but also because it gives me the opportunity to address something that will help others. My only problem last night was that I was afraid that I wouldn't remember</span><i style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"> all</i><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"> that is, indeed, "wrong" with me. However, I'm giving it the old college try.</span><br />
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">First, let me say that my rheumatologist insists on all his patients having a General Practitioner (GP) or Primary Care Doctor (PCP). Understandable: he doesn't want to be treating broken legs, colds, flu, pneumonia and so forth. In my case, my GP and rheumy work closely together. That being said, we need a "central guy" who is checking to see if anything falls through the cracks as I go to this "ologist" and the other. For example, I get all my prescriptions from my GP - save one, the Human Growth Hormone (HGH), which is a story in and of itself. My GP sends me to other specialists as situations arise, usually in discussing symptoms with my rheumatologist. </span><br />
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<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Having said that, I have to point out in that in many ways, my rheumy is perhaps often more involved in sending me to other specialists when need be, because when it comes right down to it, most of my heath issues </span><i style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">are</i><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"> a result of ME/CFS and fibro. I also worry about getting on my GP's nerves and so try not to burden too much. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;"> </span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;">So, what does my rheumy treat me for, in conjunction with my GP? </span></span><br />
<span style="color: #222222; font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;">Obviously, the ME/CFS/CFIDS and fibro are the biggest issues. But we all know that there are a lot of comorbidities going on, and in my case, I'd venture to guess that 99% are a direct result of my ME/CFS and fibro. Here is a good start as to what my rheumy addresses/treats, in my case:</span></span><br />
<ul>
<li><span style="color: #222222; font-family: Trebuchet MS, sans-serif;">ME/CFS/CFIDS </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Fibromyalgia </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Myofascial Pain Syndrome (MPS) </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Orthostatic Intolerance</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Migraine Headaches</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Body Migraines </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Severe Insomnia (called "malignant insomnia" by one neuro though "malignant insomnia" has a different definition) </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Pain</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><a href="http://laughingfrommysickbed.blogspot.com/2013/01/myoclonus-vs-restless-leg-syndrome.html">Myoclonus</a> </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Low resistance to infection </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Neuropathy </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><a href="http://laughingfrommysickbed.blogspot.com/2013/01/myoclonus-vs-restless-leg-syndrome.html">Restless Leg Syndrome</a> </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Tinnitus </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Irritable Bowel Syndrome (though in the last few months you can read how severe it became, leading to hospitalization and calling in a GI)</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><a href="http://laughingfrommysickbed.blogspot.com/2013/02/fibro-hgh-and-dhea.html">DHEA</a> deficiency</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Nutritional IVs (I have trouble absorbing many vitamins and nutrients)</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><a href="http://laughingfrommysickbed.blogspot.com/2013/08/friday-tidbits-iv-nutritionals-and.html">Chelation</a> (I'm a walking - crawling? - toxic waste dump with much heavy metal poisoning.)</span></li>
</ul>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;">For my migraines and ridiculously severe insomnia, I<i> have</i> been to neurologists and have had sleep studies (ordered by neurologists and pulmonologists), but they've not done much good - because I can't fall asleep for even the 5-10 minutes needed to register any sleep problem. </span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;"><br /></span></span>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;">I find that my rheumy and GP are much better than any of the neurologists I've seen over the past 38 years, when it comes down to dealing with my migraines and insomnia. I've had one notable exception (and what an exception!) back in the mid to late 1980's, he who diagnosed my ME/CFS in the first place. Sadly for me, he moved his practice to Hawaii. We're trying to find someone good just a <i>tad</i> bit closer. I really need a fantastic neurologist because the problems are just becoming too complicated. </span></span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222;">And it's not that the doctors I've seen aren't good doctors. It's just that we have a couple of problems in play here: </span></span><br />
<ul>
<li><span style="color: #222222; font-family: Trebuchet MS, sans-serif;">They don't understand ME/CFS and fibromyalgia enough to mesh their specialty with the ME/CFS & fibro.</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Too many simply do not believe that ME/CFS and fibro are real. </span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">We are such a mystery that doctors have a hard time seeing and understanding the whole picture.</span></li>
<li><span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">We are a headache to most doctors. </span></li>
</ul>
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">As you can see, I have problems which overlap and do need other specialists. For example, I have HGH deficiency, going on since 1999. In the last two years or a bit less, I developed hypothyroidism. My rheumy and GP send me to an endocrinologist about once a year to have my levels checked. Since my rheumy sees so much fibromyalgia in his practice, he sees a lot of HGH deficiency, so he ends up working pretty closely with my endocrinologist as well. (My rheumy sees many fibro patients with HGH deficiency - sending so many to my poor endocrinologist that he can't retire, though he'd very much like to.)</span><br />
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<br />
<span style="color: #222222; font-family: 'Trebuchet MS', sans-serif;">Which leads to my next post - and the fact that this reader whose rheumatologist wouldn't see her because her diagnosis wasn't "inflammatory in nature." There are other issues here in play. But like I said, that's for my next post. I'll just say it's a doozy of an example of what is going on in the minds of all too many doctors. And, sadly, I can't say I blame them...</span><br />
<div>
<span style="color: #222222; font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div>
<span style="color: #222222; font-family: Trebuchet MS, sans-serif;">In the meantime, I hope this helps some of my readers. </span></div>
<div>
<span style="color: #222222; font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div>
<span style="color: #222222; font-family: Trebuchet MS, sans-serif;">I also hope everyone is feeling their best, only better! Ciao and paka! </span></div>
<br />
<br />
<i><b><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
<span style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 13px;"><br /></span>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com5tag:blogger.com,1999:blog-7385285973919124831.post-37485458241940841272014-01-27T23:56:00.003-05:002014-01-28T00:14:14.227-05:00Babushka! Baby Update...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">For those who haven't heard: I became a first-time grandmother about twenty four hours ago. It's a club I've <i>long</i> wanted to join and now I'm in. Yippee!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">My BFF - who recently also became a grandmother herself, of course!</span><span style="font-family: 'Trebuchet MS', sans-serif;"> - told me it would be like nothing ever felt before and she is </span><i style="font-family: 'Trebuchet MS', sans-serif;">so</i><span style="font-family: 'Trebuchet MS', sans-serif;"> right. It's fantastic when </span>BFF's<span style="font-family: 'Trebuchet MS', sans-serif;"> go through the same experiences at about the same time, joys and tears to be shared. We've done so now for well over 40 years. (Thanks, L!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Thanks, also, to all who have kept up with this evolving story, your comments and encouragement here, on T</span><span style="font-family: 'Trebuchet MS', sans-serif;">witter, and on </span>Facebook<span style="font-family: 'Trebuchet MS', sans-serif;">. Most especially, I thank you for all your prayers. We had some mighty big scares and I'm convinced all the prayers helped. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">My sweet daughter-in-law was a real trooper as she held that baby in for as long as possible with her complications, all the while the parents-to-be and doctor having to weigh the pros and cons of the health issues for both mother and child. The sweet babe came early via C-section but mum (they do British English out there and I love it!) is resting and sleeping - that is, between feedings - and the baby is gaining weight quickly already. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Yesterday was a bit tense. However, the Skype'ing, Facebook'ing, emails, cell phone calls from literally halfway around the world (the little family lives in Kuala Lumpur, Malaysia) started to go at seemingly lightning speed once everything suddenly started to happen. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">We, on this side of the world, have been watching video sent and seeing pictures since, loving every minute of it. Thank heavens for such wonderful communications via all those handy electronic gadgets out there! Seeing and hearing the tiny babe hiccuping was just so very sweet. </span><span style="font-family: 'Trebuchet MS', sans-serif;">As you can imagine, we're "over the moon."</span><span style="font-family: 'Trebuchet MS', sans-serif;"> What bliss! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Welcome to the world, Baby Aiden! We love you. We can't wait to meet you and hold you for real. Until then, Skype'ing will have to do. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">And just for the record, I'll be going by the title/name of "Babushka" - I've waited for ages to be called that. That's with the accent on the first syllable, please!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Stay safe, my friends, especially those in the US,<i> most</i> especially in the southern states where you're not used to this weather we're having. Strange to think that it's in the 90's in KL. That's what you get when you live too-few miles from the equator. From Wiki I quote about the summer when the new dad was born: </span><br />
<blockquote class="tr_bq">
<span style="font-family: Trebuchet MS, sans-serif;">"[It] was a period of intense heat and drought that wrecked havoc on much of the Midwestern United States and Southern Plains throughout the summer of 1980... the most devastating natural disaster... destruction in U.S. history... The heat wave began in June...the central and southern Unites States allowing temperature to soar to 90 F (32 C) almost every day from June to September."</span></blockquote>
<span style="font-family: Trebuchet MS, sans-serif;">Ahhh yes! The new dad was<i style="font-weight: bold;"> <a href="http://laughingfrommysickbed.blogspot.com/2013/06/why-daily-pitocin-shot.html">three weeks late</a> </i>and had to be induced. He arriving on a balmy (!) 112 degree day and I suppose he fell in love with <i>really</i> hot weather. And yes, I know, we who've given birth tell our stories, almost obnoxiously - and to anyone who'll listen, ad nauseum! Welcome to the club, new young mum! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone is doing their very best, only better. Ciao and paka! </span><br />
<br />
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<br />irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com11tag:blogger.com,1999:blog-7385285973919124831.post-85796500989560888542014-01-13T20:35:00.000-05:002014-01-29T00:11:31.290-05:00 "Cookbook Medicine": Really?<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhrutoPUXla0XW0aw-cPHztxZ4D6pKbdt9GA-f4N4ZnlScLb9h5XQ40IWavjRgDnKQ3AS0jAogDdxesGs-izhlAj0MDzkgmen6DYeULbr0_S7loAw3APUHvCd5YeTbDYYOtEuDmAj-Yl8/s1600/002.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhrutoPUXla0XW0aw-cPHztxZ4D6pKbdt9GA-f4N4ZnlScLb9h5XQ40IWavjRgDnKQ3AS0jAogDdxesGs-izhlAj0MDzkgmen6DYeULbr0_S7loAw3APUHvCd5YeTbDYYOtEuDmAj-Yl8/s320/002.JPG" height="320" width="227" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><span style="font-family: Trebuchet MS, sans-serif;">I'm afraid I've fallen into that phase where I have so much to tell that, because I have no idea where to start, I've become paralyzed. What a silly way to be! I'm sorry it's taken so long to write a post in order to let you know about the colonoscopy, but I came home pretty sick from the ordeal of the recovery room and quite upset by what went on there. In fact, I wrote an immediate account but realized I needed a few days to settle down and get over the unprofessional conduct of the recovery room, the out-and-and lies, the fights. Someone had to take the higher ground and I was determined it would be me. (Deep breathes: I'm still stunned!) So, this post is not so much about my colonoscopy but the lessons I learned - or which were reinforced as a result of my experience - in the recovery room with doctors who seemed more like robotic technicians than patient advocates. More on this in a moment.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">First, the news which you, my friends, are waiting for: <b><i>I'm clean</i></b>! I don't know what the fuss is about when it comes to getting cleaned out for the procedure, nor the fuss about the procedure at all. It's really a piece of cake. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I do have two recommendations, however, for anyone who needs a colonoscopy: </span><br />
<br />
<ul><li><span style="font-family: 'Trebuchet MS', sans-serif;">Watch Dr. Oz get his </span>colonoscopy<span style="font-family: 'Trebuchet MS', sans-serif;"> (</span><a href="http://www.doctoroz.com/colonoscopy-videos/dr-ozs-colonoscopy-pt-1" style="font-family: 'Trebuchet MS', sans-serif;">part 1</a><span style="font-family: 'Trebuchet MS', sans-serif;"> and </span><a href="http://www.doctoroz.com/colonoscopy-videos/dr-ozs-colonoscopy-pt-2" style="font-family: 'Trebuchet MS', sans-serif;">part 2</a><span style="font-family: 'Trebuchet MS', sans-serif;">) at the very least - though there are other segments as well where one can hear his explanations. Definitely see the the first part of his experience, however.</span><span style="font-family: 'Trebuchet MS', sans-serif;"> And then realize Dr. Oz is a man </span><i style="font-family: 'Trebuchet MS', sans-serif;">not used to being sick.</i><span style="font-family: 'Trebuchet MS', sans-serif;"> He complains of bloating, etc? Please. Easy </span>peasy<span style="font-family: 'Trebuchet MS', sans-serif;">! Though make no mistake: I have to give the man kudos for having done this service for the rest of us who need to go through the procedure.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Prior to the procedure, read </span><i style="font-family: 'Trebuchet MS', sans-serif;"><a href="http://www.lancastergi.com/_files/live/ColonoscopyforDummies.pdf"><b>Colonoscopy for Dummies</b></a>, </i><span style="font-family: 'Trebuchet MS', sans-serif;">available on line for free. There, important information can be found, such as, "can I wear makeup to the procedure?" (And the answer is "yes," for those who wonder!)</span></li>
</ul><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">The few days before I went in, I was in pretty bad shape, ME/</span>CFS<span style="font-family: 'Trebuchet MS', sans-serif;"> and </span>fibromyalgia<span style="font-family: 'Trebuchet MS', sans-serif;">-wise, continuing with sweats (drenched bedding and nightwear), shakes, shivers, pain, ulcers on my tongue, swollen lymph nodes and the like. In fact, my rheumy worried if I should postpone the </span>colonoscopy<span style="font-family: 'Trebuchet MS', sans-serif;">, fearing what the "trauma" would do to my system once I got out of the procedure. I wouldn't listen to such "nonsense," so he made me swear that once I got home I'd be on strict bed rest for a week, at the very least. Since I was beside myself being so ill, I had no problems promising to rest. I really needed to eliminate at least this part of my body as a cause of any sort of new health problem.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Let me make it clear: I had a terrific experience when it came to my own private doctor. It was the hospital system that I had problems with, much of which I'm not even going to go into at any point. Why? Because it is like beating a dead horse. Period.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">However, other parts I <i>WILL</i> address, if not here and now, then in future posts. Why? Because they are really important and we all need to be aware of the fact that these are problems that are too dangerous to our health.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><b><br />
</b></span> <span style="font-family: Trebuchet MS, sans-serif;"><b><i>The "fun part" I wish to address today came in the recovery room</i>. </b> I woke up in no pain until ten minutes had gone by and slowly my BP started rising as the overall body pain started back in. My abdomen, I should add, was in no pain, however. Pretty soon my BP was dangerously high and I wasn't going to end up being discharged within the expected thirty minutes but only once my BP reached a safer number. Unfortunately, the BP kept rising and rising. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And then the lying and arguing began. I'd told the intake people, as well as the recovery room staff, that my BP was an indication of where my pain level is. For many reasons, I have no anxiety from being in a hospital nor with any operations nor procedures. Best, I was quite comfortable and trusted my own attending physician. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">However, as soon as the pain issue came up in the recovery room, the bull started. First I was told (as in "threatened"?) that were I to receive any pain medication whatsoever, it would prolong my recovery room stay, delaying my discharge from the hospital. I looked at the clock and realized that I'd now been there for at least fifteen minutes and that meant fifteen minutes to go. I thought I could hold out as far as the pain went.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">However, the pain and my body didn't agree. The blood pressure and pulse rate were rising steadily. When I pointed this out to my nurse, she, in a clearly disgusted voice, said that I was holding my arm the wrong way and shoved it. The reading instantly came back even higher. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">When I said that I needed some pain medication - the BP was now in the range that <i>NO</i> one would be sending me home any time soon - I was told the hospital no longer carried Demerol, a pain medication that had worked for me in the past. I knew it to be a lie and told them so. Important point.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">To put things out in the open, I also pointed out that I was not a drug seeker, that they should read the chart (in the computers they'd spend a fortune on installing but no one seems to like - or read) and see what my BP has told them in the past, indeed why I was there in the first place (that the impaction had scared the beejeebees out of my attendings) and what medications I'd been on before. By now, nausea was striking hard. Thanks to the music playing over the loudspeaker and the light (glare) coming in through a window without curtains, I was now also getting a head migraine and the body migraine was quickly getting out of control.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Might I add, it seemed that the recovery room was designed with the staff in mind and most certainly not the patient? Did I really need to hear pop music as I lay there, and then a DJ? Worse, I couldn't even make out what the DJ was saying: it was all just much-unneeded noise. But let's forget the patient. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">The same old bull, though on a higher level, began. Another pain reliever was offered, a strong narcotic (fentanyl), which, unfortunately, had not worked on me in the past. And so it went. Another doctor was called in, Dr. "Whiteman-not-foreign-physician" who - they must have thought, for what else could it be? - would have more influence than Dr. "Woman-and-worse!-foreign-trained-physician." How bigoted can you get? It reminded me of the incident in the ER when the charge nurse was afraid we'd object to a doctor with a ponytail and actually<i> asked </i>us if we objected to said ponytail. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">This doctor (Dr. "Whiteman") <i>also</i> said there was no Demerol in the hospital - they simply did not carry it any longer. I told him I knew that to be a<i> </i>lie. He, with a bit of shame on his face, admitted that the hospital <i>DID </i>have it but that he couldn't prescribe it. I said, "No, you <i>CAN</i> prescribe it. You simply choose not to. You simply don't want to fight with the pharmacist in order for me to have it." I also added, "since when have doctors allowed themselves to be dictated to by pharmacists?" This is a <i>HUGE</i> bugaboo of mine. I absolutely loathe that physicians have allowed the pharmacists to undermine the care of their patients. In fact, I especially hate it because of the old joke, "What is a pharmacist? Someone who couldn't make it into medical school." And it's been payback ever since! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">At this point, though I hated to, I asked for them to allow hubs to come back: I needed him to come in and fight my battle. My BP was now in the stroke range and I was in way too much pain. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">My husband and I were both appalled when we realized that the doctor had allowed a pharmacist whom we'd never met, nor knew his name, to dictate medical care from the shadows. This pharmacist, indeed any hospital pharmacist in <i>ANY</i> hospital in the US, has no accountability for the care of patients. That is the doctor's role.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">My husband and I were dumbfounded, indeed our jaws dropped, when the doctor told us that he had to practice "cookbook medicine." That was stunning. The term "cookbook medicine" is a "somewhat" derogatory term, one I've actually used a few times in this blog. I asked him, "have you no pride in your work? What has happened to you that you feel no qualms about that term, indeed own up to it?"</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I asked the doctor: </span><br />
<br />
<ul><li><span style="font-family: Trebuchet MS, sans-serif;">Since when have you allowed the insurance companies to dictate your medical treatment?</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Since when have you allowed the federal government to dictate the practice of medicine?</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Since when did you allow the corporation that owns the hospital to overrule your medical judgement?</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Since when did you allow the fear of having to justify your medical decisions prevent you from following your oath, afraid to explain to a board why you made such-and-such a decision?</span></li>
</ul><br />
<span style="font-family: Trebuchet MS, sans-serif;">How sad! How defeated! One can say, "is this the future of medicine"? No, we were told in no uncertain terms that this <i>IS</i> medicine today. Right out of the robot's mouth. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I did get the Demerol I needed - in fact it had been ordered before the doctor used the term "cookbook medicine" in his defense, but "they" (the pharmacist?) took their sweet time about it - as my BP continued to soar, breaking records yet again. Again I wondered, "<a href="http://laughingfrommysickbed.blogspot.com/2013/12/friday-tidbits-what-is-my-bp-trying-to.html">What is my BP Trying to Tell Me?</a>" as I looked at numbers I've never seen before. But that last part about the BP is for a future post.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">In the meantime, I hope everyone is feeling their very best, only better! Thanks to my very good friends out there who prayed for me and sent me such supportive emails, tweets, messages. I so appreciate y'all! Ciao and paka!</span><br />
<br />
<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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<br />
irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com14tag:blogger.com,1999:blog-7385285973919124831.post-57953287879615469852014-01-13T18:19:00.000-05:002014-01-13T23:51:49.138-05:00Waiting-for-Baby Update<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib03IR_5JohKZA6d_YIvqyzGGUluTl8SwYr6eDwSHSF2KreiZAV8mrFxw4VMPr-GKAdyrtMgfyl5HfH3_8kZPV34lFFeC0aNrkBR08Oye7ptfKPiPig0j06t_kTSQP5dYRyf4bpA2MLA8/s1600/Nicholas+6+weks+old.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib03IR_5JohKZA6d_YIvqyzGGUluTl8SwYr6eDwSHSF2KreiZAV8mrFxw4VMPr-GKAdyrtMgfyl5HfH3_8kZPV34lFFeC0aNrkBR08Oye7ptfKPiPig0j06t_kTSQP5dYRyf4bpA2MLA8/s320/Nicholas+6+weks+old.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><i><b>Praying for a healthy baby "Junior." I cannot believe this baby is so worried about his new little one now...</b></i></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><span style="font-family: Trebuchet MS, sans-serif;">I've been asked by quite a few friends on twitter, Facebook, e-mail, etc., as to how the baby is doing. So here is an "official" baby update. Before anything else, however: I thank all who have been praying for this new little family. Words cannot express how much I believe that your prayers are helping things out.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">The parents-to-be are on pins and needles as the doctor takes things one day at a time. Grandparents-to-be, aunt and uncle-to-be are praying like crazy. OK, <i><b>everyone</b></i> is praying like crazy. And, again, I thank you for your prayers. We are, after all, quite a few days post-previous crisis and I cannot help thinking all those prayers made a huge difference and continue to get mum and baby through this rough time.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">This is an illustration of why medicine is an art and not just a science. I'm so glad that the "youngsters" changed doctors when they realized that the one they'd been seeing was just not quite on the ball. I say it takes guts to change doctors because I might have been too afraid of jumping out of the pan into the fire. But they seem to be a mum and dad who are gutsy. When they lost confidence in the previous doctor, they found one who knew what to do about a high BP, lessened movement on the part of the baby, protein leaking into the urine. It's not just confidence. They had a feeling they followed: they found someone who not only "knew his stuff," but also seemed to really care about them. Again, it's always about "trust your instincts." (And of course, a "knock on wood" and a "tphoo! tphoo! tphoo!" is called for!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">A C-section will be most likely, though mum, baby, doctor and dad (poor dad is always last!) try to hold out as long as possible for the baby to develop inside, without endangering the mum nor the baby, a huge consideration. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">When I'm able to communicate with my daughter-in-law and son via phone or Facebook, I try to keep them as optimistic as possible. I've had some fun making up a (private for the parents-to-be) Facebook album for them to look at: my son before he came out of his mom's belly and after, hoping that will help them while away some hours and give them something to laugh at here and there. In addition to being the official worrier, I try to be the official laugh-at-my-expense "jokester" - as well as the official, "pray for that sweet young family person," I might add. As I said before, whatever it takes, grandmothers-to-be are shameless I believe - nah, I'm absolutely convinced.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Incredibly, mum-to-be is a bit upset that she is causing the rest of us too much anxiety and worry. I've tried to dispel <i>that</i> notion. As <i>IF</i> we wouldn't be worried. She is the one who has all the discomfort. She is the one worried beyond words. It's at times like this that you wish you had the right words. I've tried to express my feeling that this is the grandparents-to-be role: at the moment we are the official worriers. Later, with God's help, we will become the official spoilers of any child. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Thank you for all the prayers, the messages. I ask that my friends keep on crossing their fingers, sending out positive thoughts, pray a little longer for the safety of the mum and babe. Each day that baby-to-be gets stronger. Each day we pray mum-to-be stays safe, rests, enjoys some movies or anything on YouTube. It's hard to wait for that little one to finally come out when it's safe, but we must.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">To all three of my babies, the young and old, the new and old, know how much we here on this side of the world love you. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Hoping everyone is feeling and doing their very best, only better! Ciao and paka! Thank you! </span><br />
<br />
irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com14tag:blogger.com,1999:blog-7385285973919124831.post-87822954163966315822014-01-05T08:32:00.000-05:002014-01-05T18:40:30.172-05:00A Practical Suggestion For Vitamin Deficiencies<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNxak-m-1_uy09c-sEKAABVh5bWvG3mf9JMdHNE8JIGpqWF0RSXotW6d8f3EsH0bYsLiVLqqa1gR6RrJ1WffN3bYwiIfSE7iNpT_VFV39xxZcXcBloYD8Q-RI0oa5ixj6VkE0dkCEvGRw/s1600/010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNxak-m-1_uy09c-sEKAABVh5bWvG3mf9JMdHNE8JIGpqWF0RSXotW6d8f3EsH0bYsLiVLqqa1gR6RrJ1WffN3bYwiIfSE7iNpT_VFV39xxZcXcBloYD8Q-RI0oa5ixj6VkE0dkCEvGRw/s320/010.JPG" height="213" width="320" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"></div><span style="font-family: Trebuchet MS, sans-serif;">Each time any of us takes a vitamin pill or eats a mouthful of Corned Flakes, we're shown on the label what vitamins and nutrients are to be found in either the vitamin or the food. Commercials on TV taut the benefits of products such as breakfast cereal or nutritional shakes by proclaiming that they have a 100%, or more, of the "Recommended Daily Allowance" (RDA) of vitamins and minerals that we all need. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">However, how many of us understand the significance of the RDA's? It's important to note that these recommendations were originally made by the federal government many decades ago. They represent the minimum requirement for healthy people so that they don't get sick. One needs to understand and/or remember that it was not that long ago that children had rickets from Vitamin D deficiency (an example) and that adults got goiters from a deficiency of iodine in the diet. What does that have to do with ME/CFS/CFIDS and fibromyalgia?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">It's quite obvious that people suffering from these "maladies" (ME/CFS and fibro) can be very sick, so much so that they can't work outside the home, do house work, or be involved in many family affairs, such as raising children. Clearly, these patients are not healthy and therefore the RDA's do not apply to them. They have to heal and try to recover from the ravages of these conditions and likely need more nutrients than are suggested by the RDA's. In an ideal world such patients would get their blood tested to see if they have vitamin and/or nutritional deficiencies, as I addressed not too long ago in the post talking about Vitamin <a href="http://laughingfrommysickbed.blogspot.com/2013/12/stomach-acid-vitamin-b-12-deficiency.html">B-12 levels</a>.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">However, there are<i> many</i> potential vitamins that need to be assayed and the cost of doing so is prohibitive for all too many people. Furthermore, it's becoming more difficult to find reputable laboratories which will test for Vitamin B-1 (thiamine), B-2 (riboflavin), B-5 (pantothenic acid),B-6 (pyridoxine), biotin, Vitamins A, C, K, and many, many others. (Vitamin D is an exception because it's so "in" these days!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">In talking to my rheumatologist, he gave me a relatively easy formula to follow. He finds, in his mostly fibromyalgia practice, that giving his most challenging patients high doses of vitamins daily helps in their management. Taking a readily available multi-vitamin <i>THREE</i> time a day, not once a day, is usually very beneficial. His reasoning? His patients are ill and require far more nutrients than their healthy counterparts. One multi-vitamin pill is probably sufficient for healthy people to prevent them from becoming ill. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Two multi-vitamins a day, however, are for those who are "under the weather," or only mildly affected by these conditions. Three multi-vitamins a day are for those <i>severely</i> afflicted. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">He warned me that over-the-counter vitamin pills contain a mixture of fat-soluble vitamins such as A, E, D and K, which can accumulate in the body and become toxic if the levels get too high. For such patients, he recommends a vitamin preparation containing all the B vitamins and Vitamin C, which are water-soluble vitamins, and do not accumulate, but rather are flushed out of the system if levels get a bit too high. He assured me that this strategy can be quite helpful since correcting nutritional deficiencies helps the patient respond to the other treatments prescribed. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Of course, all the "normal" disclaimers apply. One should<i> always </i>check with one's doctor! Furthermore, this is a<i> very</i> basic approach to health but having said that, no treatment - no matter how sophisticated!- will work as intended if the patient is deficient in one or more vitamins. Food for thought: pun intended! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better! Ciao and paka.</span><br />
<br />
<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
<br />
<br />
irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com9tag:blogger.com,1999:blog-7385285973919124831.post-78555036165349457222014-01-04T15:31:00.000-05:002014-01-04T18:38:06.391-05:00Update: Starting the New Year with a Prayer! <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis-pyzI9TElaogv_TplaVCh_IUhSVWyL1tXlaV3PAMDZHi4qTem4LyT2U-3ZqBXVGUCHP5iQZEB-oaWTjrHAp74Y_7taa1BzlwCUf_zXMi5pKPXPfZiiP1OGhrcPZuaj3-VRKh0GDaOxc/s1600/img169.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis-pyzI9TElaogv_TplaVCh_IUhSVWyL1tXlaV3PAMDZHi4qTem4LyT2U-3ZqBXVGUCHP5iQZEB-oaWTjrHAp74Y_7taa1BzlwCUf_zXMi5pKPXPfZiiP1OGhrcPZuaj3-VRKh0GDaOxc/s320/img169.jpg" /></a></div>
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The New Year started auspiciously with me, I'm afraid. I was too ill to do a "Friday Tidbits" this week. I was too exhausted and weak, and I couldn't get myself out of bed no matter how much I tried. Heck, I was having problems just typing on my iPad in bed! <br />
<br />
I've several topics I've wanted to write about but have been too sick to go there. I'm feeling so very "frail" and "fragile," terms I loathe and which I've never applied to myself until just recently. But the shakes and the shivers come on all day long, giving me a fifteen minute break here and there. This is without the usual "stuff" of ME/CFS and fibromyalgia, of course.<br />
<br />
However, we've had a family crisis come up which seems to make all the other crises going on in our family "small potatoes." Without getting too specific, our daughter-in law and middle child are expecting a baby, due on February 14. Because the mother-to-be started running a high BP she needed to be admitted to the hospital. The latest news is that due to other complications she'll need a C-section and the doctor is going to try to delay the delivery until next week. <br />
<br />
I always feel funny asking anyone for prayers or positive thoughts sent out to anyone on my behalf, but I guess this is the sort of thing a first-time grandmother-to-be ends up doing. The fact that they are literally halfway around the world in Kuala Lumpur, Malaysia isn't helping. I'm frustrated because I'm too ill to fly out to help - after all, I did manage to go to their wedding in the summer of 2012.<br />
<br />
I'm afraid this is all I'm capable of doing at the moment. Hang in there, baby boy. Keep strong my dear daughter-in -law. You're doing a good job, my own baby boy, who is now a man. <br />
<br />
As always, I hope everyone is doing their best, only better! Ciao and paka. <br />
<br />
<br />irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com14tag:blogger.com,1999:blog-7385285973919124831.post-68303327003529398922013-12-28T22:02:00.000-05:002013-12-29T10:45:49.684-05:00Stomach Acid & Vitamin B-12 Deficiency<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbAHPSXpD6Erj2NRgSYEl07_2mOVUcFJH1tMsb8cNgUAs3W21tl6ujWnkukv5_RdeiLIvDdRhKRA0r4LShRbMXobPxOdq0C_KnDhmQwBP1BZmWidJjAvEKRV46lexHYlHmheow2H7JLb4/s1600/IMG_4818.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbAHPSXpD6Erj2NRgSYEl07_2mOVUcFJH1tMsb8cNgUAs3W21tl6ujWnkukv5_RdeiLIvDdRhKRA0r4LShRbMXobPxOdq0C_KnDhmQwBP1BZmWidJjAvEKRV46lexHYlHmheow2H7JLb4/s320/IMG_4818.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><span style="font-family: Trebuchet MS, sans-serif;">I've written before that I get three daily shots: my Human Growth Hormone (HGH), my pitocin & and my Vitamin B-12. People have asked me how do I know that I indeed need B-12 and I've always thought that a remarkable question. Doesn't everyone get their levels, such as Vitamin D, checked periodically by blood work at their GP's office? </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Vitamin B-12 is essential. This is especially important if you happen to have ME/CFS/CFIDS or fibromyalgia. The bad news is that if you get a B-12 deficiency, it can take up to two years for your body and your cells to make up that deficiency. I found this out the hard way. Oh, your blood work will show relatively soon that your body has enough B-12, but unfortunately, science tells us that the deficiency takes a long time to correct. That's one reason why, since 1997, when I first discovered this deficiency, I've been religious about getting my B-12 shot daily when at all possible.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Unfortunately, in the past year the B-12 shots have become less than daily. I think I've actually gone a month here and there without a B-12 shot, if not longer, because of all the hospitalizations this past year. (Seven ER visits*, three hospitalizations, about 33 days out of 365 in the hospital, not a good thing!) If anything, I should have been a fanatic about the B-12.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I just watched an episode of Dr. Oz. In full disclosure I'm not a big fan of the show. I call the show "Just Shoot Me Now and Get It Over With!" because I find it too gloom and doom. Furthermore, in an ABC interview years ago, I heard him say he wouldn't operate on an heart patient who smokes. I'm not sure I care for such a judgmental doctor. I also find the show too simplistic. However, I've always loved his graphics. They are amazing. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span><span style="font-family: Trebuchet MS, sans-serif;">An aside: I also viewed his colonoscopy experience on YouTube in order to prepare myself psychologically for my own procedure. Imagine how surprised I was to learn a few new things which I do want to mention in a future post. So I have softened my views about Oz lately and I see that he has softened his approach. He's no longer as gloom and doom as before and much more "positive." There <i>IS</i> a place for him on TV after all - as millions of Americans have shown us. But back to the subject at hand.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span><span style="font-family: Trebuchet MS, sans-serif;">Last week, I happened to turn the TV on as the show was ending and I heard him say something about "make sure you drink your beet juice to see if you have low acid in your stomach!" I hit "record" and thanked the DVR goddess.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Bingo! I loved the beet test in the past to assess gastrointestinal motility (how do you like that phrasing?). But it has another use. It can tell you whether or not you may have Vitamin B-12 deficiency. If your urine turns pink after consuming a beet or beet juice, it may mean that your stomach acid is low but if it remains yellow, it means your stomach acid level is good. You need stomach acid ("juices" is what my rheumy/immunologist who often vets my pieces has corrected me saying, "juices"!) to absorb and metabolize B-12, the "energy vitamin." (Again, in full disclosure, my immunologist has a problem with "energy vitamin" and likes to add the quotes. He is a very fussy fellow!) It, B-12, adds oxygen to your body, giving the red cells the power to do that. Without enough B-12, these are some of the problems you encounter, according to Dr. Oz (and with additions by my rheumy/immunologist):</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <ul><li><span style="font-family: Trebuchet MS, sans-serif;"><span style="font-family: Trebuchet MS, sans-serif;">Anemia (B-12 deficiency can cause pernicious anemia, a megaloblastic anemia)</span> </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Poor memory (first sign in B-12 deficiency)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Depression (the poor woman on the show didn't seem to agree with the depression!)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">No appetite (forgetting to eat)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Tired (walking bent over, "literally down to the ground" as Dr. Oz says)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Weak (feeling listless)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Foggy (the mental "prowess isn't there")</span></li>
</ul><br />
<span style="font-family: Trebuchet MS, sans-serif;">Now, all of the above problems are very non-specific and can go along with many different illnesses, except for the anemia, of course. So, doing the beet test and/or consulting your doctor to have your B-12 level checked would be a good way to go to rule out an eminently treatable problem.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I had our "vinigret," the traditional beet and potato salad on Christmas Eve and Christmas Day, as described in my <a href="http://laughingfrommysickbed.blogspot.com/2013/12/merry-christmas.html">Christmas</a> post. My urine was pink and I've started back on my daily B-12 shots. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span><span style="font-family: Trebuchet MS, sans-serif;">Tada! So, here <i>IS</i> one easy way to tell if you may be vitamin B-12 deficient, the beet test! Eat one beet (or drink a glass of beet juice if you don't like beets, though I'm not quite sure how one drinks the juice if you can't </span><span style="font-family: 'Trebuchet MS', sans-serif;">tolerate a small beet) and see what happens!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Before I end, I did want to mention that with me, because I've been sick for so long and because I'm <i>AM</i> so severely ill, I need the shots. We tried every Vitamin B-12 pill and liquid, even the nasal spray, for years with nothing bringing my level to normal, so I need the shots. The nutritional IV bag also helps me absorb the B-12 more efficiently. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Can you guess what one of my resolutions will be for the New Year? </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Here is<i><b> Dr. Oz's Family Salad</b></i> to getting you started on beets if you so wish. I happen to think it's a much maligned veggie in the States! </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br />
</span> <span style="font-family: 'Trebuchet MS', sans-serif;">Ingredients:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"></span><br />
<ul><li><span style="font-family: Trebuchet MS, sans-serif;">Beets</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Olive oil</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Balsamic vinegar</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Garlic</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Salt</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Pepper</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Gorgonzola cheese</span></li>
</ul><span style="font-family: 'Trebuchet MS', sans-serif;">Directions:</span><br />
<blockquote class="tr_bq"><span style="font-family: 'Trebuchet MS', sans-serif;">Boil the beets until they become tender. Pull off skin under cold running water. Chop them and toss lightly with olive oil, balsamic vinegar, garlic, salt and pepper. Crumble Gorgonzola cheese on top for extra flavor.</span></blockquote><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><b><i>Note:</i></b> I prefer to bake or roast beets; I have always used mild feta cheese in this sort of quick salad. Nothing like a sweet and salt combination! Adding sliced onions is something I might try next! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And if I get my act together I'll post my "Vinigret" recipe. If you like beets you'll find this especially delicious.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone is feeling their very best, only better. Ciao and paka!</span><br />
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*I realized that there were at least two more ER runs which I described in this blog but totally forgot! Where's my scorecard? <br />
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</b></i> <i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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</span></b></i> irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com14tag:blogger.com,1999:blog-7385285973919124831.post-16388904115440524032013-12-27T14:58:00.001-05:002014-01-02T22:16:54.320-05:00Friday Tidbits: "You're a Migraineur!"<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy_8CBP6v0iFCPRfBEyRLuepqUMj1YrGV8rzmcyzxizXkTV1tFWj6GfjE4QMpfR2arHTp8Ge4UuNT3xSyc09y8BzrO9oH1y1lFIogivNZHcik7QVbfwXzRmsWapjHWHOshyphenhyphenuC5kB8NIAA/s1600/180.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy_8CBP6v0iFCPRfBEyRLuepqUMj1YrGV8rzmcyzxizXkTV1tFWj6GfjE4QMpfR2arHTp8Ge4UuNT3xSyc09y8BzrO9oH1y1lFIogivNZHcik7QVbfwXzRmsWapjHWHOshyphenhyphenuC5kB8NIAA/s1600/180.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">One of the kinds of migraines I get. However the kind I had last yesterday is down below, so annoying that I tried to spare you. The picture might be too much, as the BBC often says.</span></b></i></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Yesterday was a bit of a rough day for me: my migraine was not just "bad" but a bit frightening as well. Normally, I have many different types of headaches and migraines, and, given my age, I thought I'd experienced every kind I'd <i>ever </i>have. I've had migraines as far back as I can remember, experiencing my first doozie when I was five, or just maybe six years old, and I'd </span><span style="font-family: 'Trebuchet MS', sans-serif;">smugly thought there were no other surprises in store for me. Sigh. Sometimes I marvel at my own </span><strike style="font-family: 'Trebuchet MS', sans-serif;">stupidity</strike><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">naivete'.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">For the first time - that I'd ever noticed, at least - each book page had a fuzziness and light around each word. (It actually looked pretty cool, though I'm not sure how much I'm aging myself if using the word "cool"!) When I closed my eyes, I had three quarter "wreaths" in front of my eyes, with white lights. I called hubs but when he tried to explain where my migraine med is, I couldn't find it. For me, this is one of the most frustrating parts of getting a migraine: that my mind can't concentrate well enough to see the bottle, even if it's right in front of my face. Normally, we have a designated space where the migraine meds are kept but since I've moved back into my redone bed & bath, we can't seem to find the right spot for the so-important pain killers. It's easy enough to find regular medications. However, when you're in pain, it becomes a Olympian feat. (Oh, thanks, readers! In complaining to you, I think I may have just thought of the right spot - if it's not too far. Hmmmm.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Hubs was able to run home in the middle of his day and give me the med. By now I was having psychedelic coloring with my eyes closed. The room was starting to move and nausea was moving in, way too fast. Yet strangely, the pain was not that bad.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">While speaking to my rheumy on the phone - and I can't remember what led to this remark - rheumy said, "but Irene, you're a migraineur!"</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Stop the world. What? I'm what? No, I'm not a "migraineur." Yes, I do get migraines in my head - </span><span style="font-family: 'Trebuchet MS', sans-serif;">and I get severe <i>body</i> migraines as well. Yes, to keep the migraines under control, I try to watch my diet </span><span style="font-family: 'Trebuchet MS', sans-serif;">and have figured out which foods I can have, which not. I try not to get (too) stressed over things. (OK, family, stop laughing!) I try to be good to my body. And just as I am extremely aware, each and every moment of the day, as to what may keep me from sleeping, so too am I aware of all thing migraine-inducing, from the way the lighting is placed in a room, realizing, too, that the sun and I have a bad relationship, to watching out for glares, living in a pretty dark room and so forth.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I'm trying to figure out what it <i>is</i> that shocked me when I was called a "migraineur." Was it because though migraines can and are too often 9's, bordering on 10s, driving two neurologists to do two spinal taps (<a href="http://laughingfrommysickbed.blogspot.com/search/label/fluoroscopy">link</a>), they aren't as bad as too many of the overwhelming symptoms of ME/CFS and fibromyalgia? The whole weakness bit is just about so much worse than anything I've ever experienced. And I've become pretty good at blocking all but the worst migraines out of my </span><span style="font-family: 'Trebuchet MS', sans-serif;">mind. Furthermore, I think I can do this PRECISELY because I started getting </span><span style="font-family: 'Trebuchet MS', sans-serif;">migraines in early childhood, due to that "window of opportunity" when learning </span><span style="font-family: 'Trebuchet MS', sans-serif;">survival skills is constant and mandatory, as dictated by Mother Nature.</span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">Back when I was preggers with my second child, I suddenly went blind in one eye. </span><span style="font-family: 'Trebuchet MS', sans-serif;">A neuro-ophthalmologist declared that I suffered from severe migraines, the blindness a migraine-equivalent occasionally seen in pregnant women. I argued that I didn't get headaches of any sort until hubs came out his shock and said, "you get them<i> all </i>the time!" I would, evidently, complain I had a headache but not realize it or hear it (much like muttering to yourself) and would start washing floors in order to "outwork" the pain. One can liken this survival technique as my way of discovering the Lamaz principle, distraction.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">When I got my pancreatitis back in September (link), I was puzzled. My info sheet given to me by the ER stated there are two reasons for pancreatitis. The biggest reason by far (some say even up to 90%) is alcohol. However, I don't drink at all, not even champagne on New Years, only a sparking cider of some sort to bring in the New Year. (I think I'm going to change that back to champagne: our last few years have been so awful that lots of things will be changed: more on this later!) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">The other reason found in medical literature and told me by my rheumy was due to gallbladder. Problem with that is my gallbladder was taken out over a year ago. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">The third reason, not stated, is that pancreatitis can result from certain medications. I'd been in a very bad place in regards to migraines, almost living on migraine meds, coping with a lot of stresses, as well as allowing myself to eat foods I know eventually put me in migraine-h*ll. One doctor says it may have been all those migraine meds that contributed (ok, maybe caused) the pancreatitis. On the other hand, it could have been another med.Yes, I get migraines, but I'm not sure why I feel like a fraud if I'm labeled, "migraineur"? The migraine med didn't help much so I'm pretty sure I may end up eliminating </span><span style="font-family: 'Trebuchet MS', sans-serif;">this med from my go-to's, since it didn't work as well as it should have. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br />
</span> <span style="font-family: 'Trebuchet MS', sans-serif;">On the </span><tt><span style="font-family: Trebuchet MS, sans-serif;">other hand, it did eliminate the body migraine, the nausea & most of dizziness </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">as well as the colors I had floating around words on a page or what I saw when </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">closing my eyes. However, everything is blurred now and my head feels as if a </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">truck hit it, with eyes that feel as I'd been crying for days. And can someone </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">take the vise off my head? On the other hand (again), this <i>WAS</i> a new sort of </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">headache, with little pain in the scope of things, so perhaps this med is one I </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">should try if/when I get a more typical migraine.</span></tt><br />
<tt><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></tt> <tt><span style="font-family: Trebuchet MS, sans-serif;">Good Grief! If I'm putting all this thought and energy into my migraines: and discussing them in such length; noting the newest kind</span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;"> as well as describing various experiences in my past; working so </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">actively to prevent them; having had much testing in the forms of CT scans, </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">MRIs, spect scan, x-rays and "things" I've thankfully forgotten, in addition </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">to not thinking very clearly as I try to ignore this mess going on in my head as </span></tt><tt><span style="font-family: Trebuchet MS, sans-serif;">I write - well take a deep breath - maybe that<i> DOES </i>make me a migraineur.</span></tt><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better! Happy and safe weekend, everyone! Ciao and paka.</span><br />
<br />
<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlnmGJSFeZTBfZo5Lup-EHHeBpgc3d1f43LDvfqZPVD-nf8OHVG3qOjtHu_u8zg7lHyCBEnnI9VYHhsMjSFZXHmNniymRsgc7DutgLsjmIdvr0oriphNzHFYwI5aaILK2mph5Y2rYpByw/s1600/179.GIF" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlnmGJSFeZTBfZo5Lup-EHHeBpgc3d1f43LDvfqZPVD-nf8OHVG3qOjtHu_u8zg7lHyCBEnnI9VYHhsMjSFZXHmNniymRsgc7DutgLsjmIdvr0oriphNzHFYwI5aaILK2mph5Y2rYpByw/s320/179.GIF" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-size: small;">I'll take this down if it's too annoying. Let me know. I was just amazed to discover something so close to what I was seeing. Normally it's stars, fire works, and so forth.</span></b></i></td></tr>
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irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com4tag:blogger.com,1999:blog-7385285973919124831.post-76943407796379211762013-12-23T14:39:00.003-05:002013-12-25T20:32:22.290-05:00Merry Christmas! <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjaqurvXpEIt0nLaNN-jnXcTGHnJaEOxfKOBRZ4lmMlxqDYEsVhHvFFbzfuMvj4nNWlKEE_JZgUXZv99G4KTfanjb4YElHE1CzcADnuNzBUxI3XdADwLmpI9iT1a0Ezbb_XPnBDC2E7U/s1600/IMG_2685.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUjaqurvXpEIt0nLaNN-jnXcTGHnJaEOxfKOBRZ4lmMlxqDYEsVhHvFFbzfuMvj4nNWlKEE_JZgUXZv99G4KTfanjb4YElHE1CzcADnuNzBUxI3XdADwLmpI9iT1a0Ezbb_XPnBDC2E7U/s320/IMG_2685.JPG" width="320" /></a></div><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Merry Christmas to all who celebrate this holiday - and at this time! That may seem like a nutty sort of statement but most of the friends I have from childhood and summer camp days still celebrate the old date, January 7. We're in the middle of the holiday season, which <i>never</i> seems to end.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">A funny story for you, my dear readers. (Sorry! That sounds so forced!) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">On the day back to school after Christmas vacation when I was in Kindergarten, I came home in tears. I'd found out, much to my horror, that I must have been a bad girl. My English wasn't very good - I'd been at it only since school had started four months before - but I knew enough to realize that my friends had received their Christmas gifts and I'd received nothing. Nothing at all!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">My mom couldn't understand why I'd </span><span style="font-family: 'Trebuchet MS', sans-serif;">come home crying and I must truly have been </span><i style="font-family: 'Trebuchet MS', sans-serif;">sobbing</i><span style="font-family: 'Trebuchet MS', sans-serif;">. Imagine how bad she felt when she realized that "Catholic" Christmas had been celebrated by all my new-found friends. It never occurred to her that my friends would come to school with tales of what their loot or haul had been and I would be without any treasures. Maybe she thought that I didn't know enough English yet to understand that we celebrated Christmas the old style, on January 7. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">That was the last time we celebrated Christmas only one day of the year. After that, we celebrated Santa Claus and Christmas on December 25, "Western" or "New Style," with presents from my parents. However, we also celebrated January 7 and Ded Moroz (Grandfather Frost), at which time we received presents from our Godparents and Grandparents. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">There is a funny bit I've found on quite a few places on the Internet stating, "You know you're Russian Orthodox if...." One says, "you get great deals on Christmas trees and Easter candy" and that "you automatically deduct 13 days from today's date." That's because the Old Style is according to the old Julian Calendar and we in the West celebrate everything by the Gregorian calendar with a 13-day difference. (Don't get me started on how Easter is figured out.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Once I married we made the decision to celebrate only the New Style, considering that hubs is "western" and that was further cemented when we settled down to live in an area which doesn't have a Russian Orthodox Church. Our local church is Greek Orthodox and the Greeks - smartly - have changed their Christmas celebration to the "new" date. But we don't discard or dismantle the tree until after January 7. Technically, I <i>should</i> be waiting until January 14, the Old Style New Year's Day, but that is just way too long for me to wait. Imagine how dry the tree is by the time it gets discarded! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">If all goes well, we'll be celebrating Christmas Eve Russian/Ukrainian style tomorrow night. There will be twelve separate dishes, one in honor of each of the Apostles. I don't know how "traditional" it is to add a 13th dish, in honor of Christ, but our family always added in the 13th dish. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I absolutely love Christmas Eve because on that day there are a few dishes which we (read my family and probably most) only eat on Christmas Eve, including "Vinigret," a delicious beet and potato salad with all sorts of goodies thrown in. Most important is the "Kutya." It's wheat berries with poppy seeds, nuts, honey and other goodies thrown in, depending on what your family recipe is. Hubs has become pretty good at fixing the kutya in the last few years. Christmas Eve is lenten, so no meat nor dairy products, with many forms of fish. On Christmas Eve I suddenly like herring! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">On Christmas Day we have another pig-out meal: the kind most would imagine, with the turkey, mashed potatoes and so forth. By then we are dragging. We'll have been celebrating since late October with my birthday, then Halloween, Thanksgiving, hubs' birthday, Christmas Eve and Christmas Day now behind us, New Years still to get over with, then nominally recognizing the old Christmas Eve, Christmas Day and New Year's. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And I wonder why I got CFS and fibromyalgia? Hmmmm... I might want to think about that! ;)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And any rate, I wish all a Happy Holiday, as well as a Merry Christmas to those who celebrate. As always, I hope that everyone's feeling and doing their very best - only better. Ciao and paka! </span><br />
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</span> <i><b><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com10tag:blogger.com,1999:blog-7385285973919124831.post-37421275305992451292013-12-20T11:18:00.002-05:002013-12-24T14:20:21.013-05:00Friday Tidbits: What Is My BP Trying To Tell ME?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSXOCBoHD2DhYeAKpGBh33kcXnCejDGgzOgvKFR80D0T8fn_72Eyiz-epFUXEHvjOKhTOtD0uHNsS4iP4uQL31uKBtILkHiTa1X_OaF22jNEwkk4UMDIvjS6k3dYL68AtzjDawy9W-GFY/s1600/001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="204" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSXOCBoHD2DhYeAKpGBh33kcXnCejDGgzOgvKFR80D0T8fn_72Eyiz-epFUXEHvjOKhTOtD0uHNsS4iP4uQL31uKBtILkHiTa1X_OaF22jNEwkk4UMDIvjS6k3dYL68AtzjDawy9W-GFY/s320/001.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif;">Sometimes moms are guilty as well when it comes to listening. This was no happy camper! </span></b></i></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><span style="font-family: Trebuchet MS, sans-serif;">Yesterday I finally made it to my GI appointment and I'm on Cloud 9. You may not think going to see a doctor is remarkable but consider this: since 2009 I've made many appointments wh</span><span style="font-family: 'Trebuchet MS', sans-serif;">ich I've had to cancel at the last minute, all because I was too ill from my </span>CFIDS<span style="font-family: 'Trebuchet MS', sans-serif;">/ME/</span>CFS<span style="font-family: 'Trebuchet MS', sans-serif;"> and </span>fibromyalgia<span style="font-family: 'Trebuchet MS', sans-serif;">. This is the first time I've been able to see my GI in his actual office. (Baby steps!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">So, hallelujah! It was almost a miracle that I got there. I won't even mention the melt-down I had as I was getting ready. Nor the shaking on the outside, shivering on the inside. That I fell a few times. That I dropped many things - because of the shakes. Or that I ended up with cuts in various places because of the shaking, shivering and weakness. That I couldn't stop the sweat rolling off my head and other parts. That getting dressed was more of an ordeal than the usual: my arm has a rotator cuff injury so I can't do simple things like put on a bra. Hubs was having such a hard time getting me hooked in that I finally yelled (yes, I admit I yelled): "you must be the only male in the world who can't get a bra on a woman." Hmmm. Maybe that only applies to getting <i>off</i> a bra and not getting one <i>closed</i>. I may have to rethink that remark! ;)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Continuing: I couldn't control putting on my eyeliner. My vision, which is so iffy, was so bad that I had trouble connecting the eyeliner with the place it's supposed to go. (The vision problem is that the eyes aren't getting the right signals from my brain, the <a href="http://laughingfrommysickbed.blogspot.com/search/label/pitocin%20deficiency"><b><i>pitocin problem</i></b></a>.) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">My skin has many problems such as rashes and hives but almost never zits? Well, when I got home I found quite a few zits. My rheumy tells me that it's because of the stress of getting ready for the outside world, just overdoing it, which produced those ugly suckers. But you don't want to know all those gory details as I pushed and pushed myself to try to get out the door. Right? So I'll spare you. (That's me being tongue-in-cheek, folks! I just told you most of it, I know.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">So, getting back to the appointment. It was good but it could have been better. Don't get me wrong, I really like my GI. However, I don't think that 15-20 minutes (tops) is enough to discuss what I've got going on with me, my very complicated and long-term problems. And it's further frustrating because this doctor, who's been in practice for over 30 years, repeated for the nth time that he'd never seen such a bad case of impaction, occupying my entire colon which we fought during that 10-day hospitalization in late October. The impaction he could spend a few minutes on but not address some of my concerns and observations which I feel are needed in order to get to the root of the GI aspects of my health. We're over the impaction and need to move on. Yes, it's great to have validation that I was in a situation that<i> DID </i>need a pretty long hospitalization (hear that ER???) and to know that hubs and I were right to use all our wherewithal to get me admitted by the ER. (For that incredible incompetence/neglect/unprofessionalism, see links <a href="http://laughingfrommysickbed.blogspot.com/2013/10/dont-mess-around-with-pancreas.html"><b>here</b></a> and <a href="http://laughingfrommysickbed.blogspot.com/2013/12/friday-tidbits-hunger-games-give-me.html"><b>here</b></a> and a whole lot of other places in this blog, of late.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">But yesterday was a bit of a wake-up call. I've finally figured out one of the things that has me concerned.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">For decades I've had extremely low, verging on dangerously low, blood pressure. In fact - and I know this is a bit mean, forgive me - but each time a new nurse at my GP's office would take my BP, I wouldn't warn the nurse that I have low BP. Each time the nurse would have to take the BP measurement again and again until hubs and I would burst into laughter telling the poor soul which numbers she should head towards. Hey, we get our jollies where we can! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Just as each member in my family has something about me that's a "tell" as to how bad I am on any particular day - hub's is the color of my lips: no color or blue - <i>my</i> "tell" to myself is my BP. If my BP is high (and hubs is experienced in taking BPs) I know that I'm really sick and I try to stay in bed, emphasis on "try."</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Before going on, yes, I do understand that the BP is only one part of a complete picture and that everyone has their own unique BP numbers. However, before I became <i>really</i> sick, my normal BP was always 120/80, a very good BP level. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I also have orthostatic intolerance, which adds to the danger of the low BP. Typically, in bed my BP is 90/70. I sit up and it goes down to 80/60. I stand up and it drops to 70/50-55. My low BP is one of the contributing factors to my falls. It's also a contributing factor to why I can't do things. For example, it's been years since I've been able to take a shower, I have to bathe in a tub. I can't stand anywhere, I have to be seated. I can't eat at a table, I have to eat in bed. You get the picture.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">All too often, going to go see my GP is really strenuous. (Understatement.) I'm in too much pain, I'm miserable because I haven't slept in 24-72 hours. I have a monster migraine or I'm simply too weak, I'm "fragile" (I hate that word!) and so on. By the time I get to my GP's office, on those really bad days, my BP will "skyrocket" to the 120's. For me that's validation: I'm not being lazy, I'm sick. Yes, lazy. It's one of the Achilles Heels I live with. I <i>fear</i> being lazy. (Hence so many home accidents, falls, etc. And scarier is that I do have a moment of being unconscious.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Furthermore, with my BP in the 120's, I know that I really have to<i> try</i> to stop doing the little projects that I give myself so I don't go stark raving mad from boredom and inactivity - or to distract myself enough to ignore the awful pain. However, if I <i>don't </i>stay in bed here are just a few of the weird things that have happened to me. Believe me, these are just a <i>few</i> of the examples: </span><br />
<br />
<ul><li><span style="font-family: Trebuchet MS, sans-serif;">I really wanted a cup of tea but hubs, on this particular day, had given me a warning not to get out of bed. After a few hours, I couldn't stand it and went down to the kitchen. As I opened the cabinet, a mini-Cuisinart fell down and its sharp blade cut my forehead. (OMG: 10+ years later it now occurs to me how it could have been an eye that got hit. Gulp!) You know head wounds: blood was all over the place. Despite that, I was way too sick to go to the ER for stitches, even with an ambulance. Had the house been burning down, honestly, I wouldn't have been able to get myself out of bed. An aside: for months people would tell me (especially doctors) that I would have a nasty scar across that valuable piece of real estate. This was <i>before</i> my body stopped making (adult) human growth hormone and I was always freakishly lucky not to scar. That, along with a bit of lavender essential oil, left no scar whatsoever on my forehead.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">One Thanksgiving: I was feeling weak and shaky from having cooked and baked since the weekend and hubs was insisting I get to bed. However, I didn't want the "Pillsbury" Thanksgiving/Christmas Eve/ Christmas Day/New Year's Eve and Easter dinners my poor husband tries to do. (He means well and it's not his fault that he lacks the cooking and baking gene, but....) We were down to our last couple of hours before the actual dinner, which we all know is the most frantic part of any festive/over-the-top meal. "Just let me finish this!" "No, go to bed NOW!" was said quite a few times. Without thinking, I picked out the blade in the regular-size Cuisinart - and sliced the tip of my thumb extremely deeply. When, after 10 minutes it wouldn't stop bleeding, despite elevating my arm above my head, I had to go to the ER. Yet another Thanksgiving to remember!</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">One more of the many incidents and I'll put you out of your misery. OK, two. I got out of bed to go to the bathroom and in "coming to," was surprised to find myself on the floor. On top of me was a wicker tray with stand and a wing chair.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">BEST: in the bathroom I passed out. You know the principle: A body at rest stays at rest, a body in motion stays in motion. As I passed out, my arm went into the toilet down to the bottom, my head ricocheted off the toilet paper holder (breaking the holder), continued to ricocheting by hitting my shoulder hard on the sharp edge of the bathtub, ending up bouncing my head off the hard corner of my vanity. </span></li>
</ul><div><span style="font-family: Trebuchet MS, sans-serif;">So BP has become a huge motivator in getting into bed and "resting." </span></div><div class="separator" style="clear: both; text-align: center;"></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Last year I declared war on my health. Oh, I've been at war to get my health back for decades, but this wasn't just war I'd now declared. I now wanted a<i> nuclear </i>war declared on whatever is making me so sick and the accelerated speed at which I'm deteriorating - and losing body parts! There aren't too many spare parts left after all.</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Instead, I had another whopper of a year in terms of how much time I spent in the hospital. Luckily, I didn't break any records, mainly the one year when I'd spent more days in the hospital than I had at home. But this year has been close to a record-breaker. </span></div><div><br />
</div><div><span style="font-family: Trebuchet MS, sans-serif;">Getting back to the GI appointment. My BP registered at 150/90 (if I have the diastolic right). Hubs and I have a game where we try to predict what my BP will be, based on how many melt-downs I had in getting ready, how often I had to sit in order to prevent passing out, how much I'm shaking and all that jazz.</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Boy, were we wrong. We'd thought it would be the high 20's.</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">And that's what is bothering me. Lately my BP has been too high, even breaking records with numbers such as 192/104. That's not good for anyone, but especially someone whose BP is often 70/55. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">I don't want to put a band aid on the high BP by taking medication that will lower it. I want to get to the bottom of why it is that suddenly the 150's are coming in regularly and that I keep breaking my BP records, that I'm into new, disturbing numbers now on the other side of the pendulum. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">What the heck is/are the problem(s)? We're still on the "Hunt For Red October," where I was over a year ago. </span><span style="font-family: 'Trebuchet MS', sans-serif;">And how can this problem be resolved when doctors don't spend enough time with you in order to try to figure out what the underlying problem(s) is/are, nor communicating with your other doctors (as they did back in the day!) to figure out what is going on?</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">At any rate, I'm scheduled for a colonoscopy in early January. And I came away from the appointment with information on the colon which I didn't have before. I'll describe those tidbits in a future post. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">In the meantime, I hope everyone's doing their very best - only better! Happy Holidays! Ciao and paka.</span></div><br />
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<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com6tag:blogger.com,1999:blog-7385285973919124831.post-32153020646776054642013-12-18T14:22:00.001-05:002014-01-07T09:40:29.020-05:00Beauty Basics for the Hospital and....<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZT_i9K4PDL9hwzePenYKoJvyvQ52lPtg4gsI_cR-Htrh9kes1r-I4imgyx2T7TlwMZmzLXNOPCsU1U-UYnf2xWzw2E1Y508Fag8kW_azIUWbvAmFkTjDietDKouxXiVMYHwqCOg0j_Iw/s1600/002+(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="295" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZT_i9K4PDL9hwzePenYKoJvyvQ52lPtg4gsI_cR-Htrh9kes1r-I4imgyx2T7TlwMZmzLXNOPCsU1U-UYnf2xWzw2E1Y508Fag8kW_azIUWbvAmFkTjDietDKouxXiVMYHwqCOg0j_Iw/s320/002+(2).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><i><b>A long ago Christmas with the kids trying to get our cat, Misty, to pose as well. </b></i></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: Trebuchet MS, sans-serif;">Between spending hours last night getting ornaments on the Christmas tree and a scheduled appointment tomorrow with my gastroenterologist, I'm not sure I'll be able to write a Friday Tidbits this week. To make sure something gets done, I'm writing today. I really need to get strong enough to start posting more often, but those of you who keep reading this blog, no matter how little sense I all too often make, know how many ER visits (6!) and hospitalizations I've had in the last few months.</span></div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">So, today a bit of this and that, mostly my thoughts on ...</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <br />
<ul><li><span style="font-family: Trebuchet MS, sans-serif;">There's been a lot in the news about the FDA requesting the manufacturers of antibacterial soap to show that the claims they make are indeed true. I was pretty happy to see this. I use only Dove "beauty bar" (soap!) except for one exception: the Dial antibacterial pump I consider a "must" for underarms and surrounding area. For me, nothing works without that first step. If I forget it, the two different deodorants I use at the same time simply don't work. And it makes sense. The "foul" smell is from bacteria. With all the sweating "we" do, bacteria multiplies awfully fast! </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">I always carry Dove in my emergency bag for possible hospitalization when running to the ER but I've now decided to add the pump Dial antibacterial soap as well. The antibacterial soap in the hospital is just too harsh for my sensitive CFIDS/ME/CFS and fibromyalgia skin.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">I've also added air freshener and a scent (perfume) that puts me in a good mood and allows my doctors to come much closer to me and my bed. The air freshener is for everyone's survival, especially if a digestive disorder is lurking.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">My sensitive skin can't handle the washcloths in the hospital so I bring a couple of my own, in a distinctive color - this so they don't accidentally get thrown into the hospital's laundry. Purple is one favorite. Another is a washcloth that was brown but somehow came in contact with bleach. No one wants it and that poor washcloth has finally found a new purpose for its "life." ;) Don't we all want to be useful? </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Ear plugs are definitely in my emergency bag. The noise on the floor was so crazy that I couldn't even hear the TV - and the speakers were on the inside of my bed. </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Hospital air is dry. Add to that the fact that we often run fevers. On top of that, our dry eyes can drive us crazy. It got so bad that I had hubs bring me my Evian spray in a can. Don't scoff! Water in a spray bottle just doesn't cut it. A spray of Evian misted my face and I felt much better. (Or you can go insanely decadent and get La Mer's version, bliss!)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">When you're really sick, it's hard to motivate yourself into washing your face. The answer: miscellar water and cotton pads. Bioderma is my absolute favorite.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">And, a crazy thing: I brought all I need for a basic manicure! When I started to feel a bit better, I did a very slooow and minimum manicure when I couldn't sleep at night. (Who knew there's a upside to being an insomniac?) I'm not <i>completely</i> nuts: a neutral color was used.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Finally: If you're feeling really good and bored (as I did with my gallbladder surgery last year) you can even do a couple of DIY spa treatments! </span></li>
</ul><div><span style="font-family: Trebuchet MS, sans-serif;">Some of these points have been covered in the past. (<a href="http://laughingfrommysickbed.blogspot.com/2012/10/friday-tidbits-9-beauty-and.html"><b>link</b></a>) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Christmas is almost here. Ugh to the craziness and yay to the food. I love Christmas Eve dinner because it's lenten and there are dishes we eat only on Christmas Eve. But more on that later.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I hope everyone's trying not do too awfully much and risk a flare. Tonight the tree was fun to do once I could haul myself out of bed after taking painkillers. Only four ornaments broke. I managed to cut my ankle and get blood on my new off-white living room area rug. That's when hubs and I called it quits, leaving the rest for today or this weekend. But then I went too far. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">At 1AM, unable to sleep, I snuck downstairs and spend six hours on finishing the ornaments part and cleaning up the area. I wanted to surprise hubs, as well as send some more "in progress" pictures to the son living in Malaysia. (OK: truth be told I was bored and antsy. I hate doing nothing!) The top of the tree needed more work but I just didn't have it in me to fix it, thinking I might be inspired later. I sat down to take pictures and they looked fine (other than that blasted top!). Then I wanted a picture with the lights on. Surprise! Suddenly half the lights were not working and we had tested them so much to be <i>sure</i>! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Oh yeah. I'm going to be in great shape for that GI appointment tomorrow! ;)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Until next time, I hope everyone is doing their best - only better! Ciao and paka! </span><br />
<br />
<br />
<i><b><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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</span></b></i> <i><b><span style="color: #990000;"><br />
</span></b></i></div>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com0tag:blogger.com,1999:blog-7385285973919124831.post-53256510272906486882013-12-15T21:28:00.003-05:002013-12-15T23:25:40.322-05:00Christmas: CFIDS/Fibro/Redneck Style<br />
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<span style="font-family: Trebuchet MS, sans-serif;">This year, it seems I'm in a "redneck" mood for thanks. Having lived in our town for over 30 years, I use the word affectionately, not to mention that in some ways, our entire family has become at the very least a "country" family, if not a "redneck" one. ("Redneck," "country"; you say potato, I say potato!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Each year, one way or another, there's a new Christmas album underneath my tree; they've ranged from Elvis to Andrea Bochelli. It's my daughter who notices which song or singer I'd been attracted to each Christmas season. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Now, as a full-fledged CFIDS/ME/CFS and fibro-mite, I'm rather slow on the uptake. It was about the 15th time that my daughter had gifted me a Christmas album that I realized the Christmas album had become a tradition between the two of us. (OK, I may exaggerate: I might have caught on at about year 10!) Not noticing this for so long, however, may pretty much land me smack into the middle of the "bad mom" category since at one time, one of her Facebook quotes was, "A day without music is like a night without the stars." Or something like that. Techno-genius I'm not and I can't find the quote now - of course. <shrug></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">Like most families, we have our little, as well as silly, as well as big, Christmas traditions. OK, so perhaps other families don't usually include a mom on Christmas morning who couldn't manage a bath in the last few days, nor get her makeup or hair done - a crying shame because it's <i>REALLY </i>needed - and it's why this mom stays out of most Christmas photos. Like many families, if not most, we have our bumps that go on during the night and I don't mean Santa landing in the chimney. (Was that comment just a bit too corny?) But we have great traditions as well - or so I try to tell myself. (Hang in here, folks. There is a story and a point here, a picture of our life as well as the ME/CFS and fibro factor! And ER visits! Promise! Read on, my brave lovelies!) </span><br />
<br />
<span style="font-family: Trebuchet MS, sans-serif;">For the last 28 years - or thereabouts - we've bought our Christmas trees from a certain tree farm run by "Granma". (Here comes a <i><u>CFS/fibro tip</u></i>: try to get your tree delivered if you can't handle going out.) Granma had to have been 80 years old when we first "discovered" her. Or perhaps we felt as if she were 80 since hubs and I were still in our early 30's. When the kids were growing up - and even in adulthood when they've been around - we'd all head out in August or September and go up and down the hills looking for a suitable Christmas tree, always a blue spruce.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">When the perfect tree was found - and yes, after more than a few arguments along the way, none of which were <i>ever</i> tree-related - we'd tag it with our name and come December 10 (our preferred date) the tree would be delivered to our house, already mounted in the stand. Understand the "we" part started to <i>not</i> include me after a few years, but that's OK since I'm not one who has ever loved walking up hills and down into dales. (Flashbacks of my many summers in 1-2 months-long camps and way too many hikes! Help! Agh!) As for the years when we couldn't do the tree hunt? Well, granma had about 10-years worth of trees she had a eye on for our family. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This year, however, insurance got the best of Granma's place and they couldn't deliver their trees to their customers' homes. So hubs and daughter had to get the tree themselves, driving up the steep hills during a snow fall. Hearing them try to lug the thing into the house, as well as "place" it, made me "run" back to my bat cave: I really wasn't up for the keystone cops routine. And my hands were itching: oh boy...I sooo wanted to do the job but couldn't. (Lordy! I so hope that this getting-of-Christmas-trees-on-our-own doesn't become a tradition! We're too old to start now.) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">The TV stations started revving up for the holidays and (too) many specials were on, when not too long ago the TV happened to be turned to the Country Music Awards. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I semi-heard a funny song as it was ending and hit "record" and then ignored the show, going alone with whatever I was doing. But a few days later I found the guys singing the song who'd caught my ear. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I'd never heard of "Duck Dynasty" and still have not learned anything about them.... Pretend there's a transition here, please. My brain is blanking!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I find the hardest part of Christmas to be not just that I can't cook and bake like I used to. Like so many of you, I literally cooked and baked for at least a week before Christmas Eve (Russian/Ukie foods and traditions) and Christmas Day (American/Catholic/West/Italian foods and traditions) in order to get everything ready for those two dinners. But what's been harder to take? Gone are the days when the entire family would be home for Christmas. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Somehow we always "officially" started our Christmas season by stringing the lights to Elvis' Christmas album. And it's always Elvis, to the point where I've forgotten how many times we've had to replace the album because of wear. By the time "</span><span style="font-family: 'Trebuchet MS', sans-serif;"><a href="http://www.youtube.com/watch?v=qzHfQk7ATU0"><b>Blue Christmas</b></a></span><span id="goog_995498770" style="font-family: 'Trebuchet MS', sans-serif;"></span><span id="goog_995498771" style="font-family: 'Trebuchet MS', sans-serif;"></span><a href="http://www.blogger.com/" style="font-family: 'Trebuchet MS', sans-serif;"></a><span style="font-family: 'Trebuchet MS', sans-serif;">" and <b>"<a href="http://www.youtube.com/watch?v=WnBeCRuBNCs">I'll Be Home For Christmas</a></b>" came on, I'd start to dance with the boys, camping it up, no matter how much they "hated" it. And trust me, there were years where they hated it alright, but played along. The one year, however, I forgot to put on the album and started stringing lights without first dancing with the boys? They were outraged and hurt. Typical, right?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">But getting back to this year and being in some sort of redneck karma, debt and gratitude. With ER visit #1 of these last couple months, I had to drive myself to the hospital. Getting out of the car was tricky not only because I had the mother of migraines, but the parking space was too small, combined with lugging out my bag and cane. I stumbled against the trunk of the car and was righting myself when a guy came running over, yelling to his two women friends that "this nyice laady fell! We need a wheelchair!" I kept trying to reassure him that I was OK, but he insisted on half-carrying me to the ER, demanding a wheelchair and that I be seen immediately. No one was going to argue with my knight-in-redneck armor. Thank God!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then with the ER visit #3 and the pancreatitis, I had to take a cab home.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">Understand, you really don't want to take a cab in our town and, to be truthful, I <i>was</i> nervous. After all, the one time I'd taken a cab, it felt like the tiny circus car where clown after clown keeps getting out and the audience wonders how so many people can fit in the tiny car. Well, I was the 6th person in that cab - yes, that's <i>sixth</i> - and the only one not smoking! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Hallelujah, this time I lucked out in being solo in the cab. And the best part was that my cabbie was so nice, especially appreciated after the treatment by the ER staff. (See the unbelievable "<a href="http://laughingfrommysickbed.blogspot.com/2013/12/friday-tidbits-hunger-games-give-me.html"><b>attitude/bully</b></a>," which, hard to believe, is not the <a href="http://laughingfrommysickbed.blogspot.com/2013/10/dont-mess-around-with-pancreas.html"><b>pancreatitis</b></a> one.) He was just so mellow and yet got the message across that if I wanted to talk, that was OK, if I wanted silence, that was OK as well. That day I really needed someone who thought I was, sick, sane and not a drug seeker. (Because really, they were the insane ones, practically accusing me of being a drug seeker when my blood work clearly showed pancreatitis!) When I later told my daughter about the "knight" and how the man had practically carried me into the ER, she said, "Yep, mom. Rednecks are the best! They're <i>REAL</i>!" Real nice and mannered in my book, which goes a long way. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And so my Christmas song for the year: <b><a href="http://www.youtube.com/watch?v=Ko6G1_NGAac">Hairy Christmas</a>. </b>(I think that those on mobile devices need to hit the highlighted link to see the video.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><b><br /></b></span>
<span style="font-family: Trebuchet MS, sans-serif;">"So hunt you down a Christmas tree/</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Thank God mama's cooking is free/</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Round up your redneck family...."</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">How perfect? A hunted-down Christmas tree is a tradition. OK, so it's <i>daddy's </i>cooking that's free these days, but I'm in there somewhere too - or so I hope. And we're going to round up as many redneck family members as possible - hoping that I can manage Christmas at the dining room table and not in my bed....all while hoping that next Christmas we'll have more Redneck family members to be rounded up. <wink, wink!> In the meanwhile, enjoy my Christmas-song-for-this-year performance! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />As always, I hope everyone's doing their very best - only better! Ciao and paka.</span><br />
<br />
<i><b><br /><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
<br />irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com1tag:blogger.com,1999:blog-7385285973919124831.post-73202346153243829142013-12-08T17:57:00.000-05:002013-12-09T00:02:51.863-05:00Children & Fibromyalgia: Interview w/ a Pioneering Rheumy Continues<div class="separator" style="clear: both; text-align: center;"></div><br />
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</div><span style="font-family: Trebuchet MS, sans-serif;">Today I thought I'd continue the third installment of my interview series with my pioneering rheumatologist. I would ask my readers to please see what his unique qualifications are, which I described in our first interview. (Please don't make me bore y'all with that "stuff" again but it <i>IS </i>quite impressive.) All you have to do is hit this<b> <a href="http://laughingfrommysickbed.blogspot.com/2013/08/an-interview-with-fibro-pioneer.html"><i>link</i></a></b> and you're there! But don't forget to come back! LOL! And please don't be insulted that I feel I need to remind you to return - I know all too well that our brains are often a sieve. I'll try to remember to repeat the link at the end of this interview as well. And off we go!</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Fibromyalgia (FM) in children has not received as much attention as it deserves. I knew my rheumatologist presented a lecture in Paris in 1989 regarding the diagnosis and treatment of FM in children and so I decided to ask him his thoughts on this subject. Might I add that I was really surprised to find that since 1989, the vast majority of FM research projects have dealt with FM in adults almost exclusively? Those which do report on fibro and children are, for the most part, "review articles," not clinical trials or clinical research. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Furthermore, the FDA has yet to approve an FM treatment for children. This makes it all the more pressing to talk about this subject and get these children the diagnosis and help they need. For those who aren't steady readers of this blog, the qualifications of my rheumy can be found here (<a href="http://laughingfrommysickbed.blogspot.com/2013/08/an-interview-with-fibro-pioneer.html"><i><b>link</b></i></a></span><span style="font-family: 'Trebuchet MS', sans-serif;">). He has a well-established and well-regarded general </span>rheumatology<span style="font-family: 'Trebuchet MS', sans-serif;"> practice and has a special interest in soft tissue conditions like FM. In the 31 years he's been in practice, he has published numerous times regarding FM in adults and also in children (again: read the darn link!)</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><b><i>Upa</i></b>: Before we get to the heart of the matter, thank you for taking the time to comment on some pressing issues regarding fibromyalgia. Today, I'd like to ask you about fibromyalgia in children.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: I'm happy to discuss this with you because FM in children and teens may be present and overlooked. Worse, it may be misdiagnosed. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: Yes, I'm really surprised at how many people I've met on twitter, for example, who came down with fibro in their teen years. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: I have treated quite a few children with FM who were thought to have other medical problems. When the complaints are mainly pain, a child might be diagnosed as having early juvenile arthritis; if the child has problems concentrating and difficulty sleeping resulting in problems paying attention in school, that child may be diagnosed with Attention Deficit disorder (ADD). If one misses FM in children and attributes symptoms to the wrong problems, not only will the FM go untreated, but the child will carry a label and be exposed to side effects of various medications unnecessarily. </span><br />
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</span> <span style="font-family: 'Trebuchet MS', sans-serif;"><i><b>Upa</b></i>: Can you perhaps give us some examples?</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: Of course. I have seen children in my practice who have been treated with cortisone-type medications for presumed juvenile idiopathic arthritis. These kids gained weight from the medication, but were no better. In a society where childhood obesity is a real problem, you don't want to use cortisone-type medications unless they are absolutely necessary. One particular patient comes to mind. This 10-year old girl with FM had gained 30 lbs because of the medication and the symptoms actually worsened.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: And how did <i>you</i> treat this child?</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: As I'm sure you're well aware, the FDA has approved three medications for FM: Lyrica, Savella and Cymbalta. The approval, I believe, is for adults, so any specific treatment for children with FM would probably be off label. Many years ago, amitriptyline, a tricyclic medication approved for depression was used to treat FM. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: And how did it work?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: In low doses, this medication - amitriptyline - could improve sleep. It actually enriches sleep in that it preferentially allowed the patient to get more stage 4 non-REM delta wave sleep. Thus, FM improved in that fatigue and pain were lessened. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: Did you use amitrypteline to treat the child patient?</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: No, I used cyclobenzaprine, which is approved by the FDA for muscle relaxation but is chemically almost identical to amitriptyline. Not only does cyclobenzaprine help to improve sleep, but it also can relax the muscles directly. One of the common side effects of cyclobenzaprine is sedation (sleep). Many patients can't take it during the day. However, it can be an ideal medication for FM in that this side effect is actually desirable.</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;"><br />
</span> <span style="font-family: 'Trebuchet MS', sans-serif;"><i><b>Upa</b></i>: And how was this desirable </span><span style="font-family: 'Trebuchet MS', sans-serif;">when the child needs to go to school?</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: Obviously, the child would only take the medication at bedtime.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: And was there "hang over"?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: Not in this child. However, in some children that can be a problem so the dose of the medication has to be adjusted. Some children need as little as 5 mg at bedtime whereas others needed as much as 20 mg. There is really no way to predict based on the child's size, but a good starting dose would be 5 mg and then see how the child responds.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: How long does it take?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: I have seen good responses in a few days. Usually, the child will be able to sleep better, not waking up in pain and actually enjoy physical activity during the day. The "growing pains" tend to disappear and the child does not "act out" as much, or have as many problems concentrating in school.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: Do you use any other medications in children? </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: Yes, if cyclobenzaprine doesn't work I might use another tricyclic medication such as doxepin or amitriptyline. I do <i>NOT</i> use Cymbalta or Savella because of their potential side effects, especially suicidal ideation or suicidal actions. The best advice I could give you is to be extremely careful, follow the child closely and use what works. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Upa</b></i>: How do parents get help for their child?</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><b><i>Doc</i></b>: One must have a high index of suspicion that the problem might be FM and speak to the child's doctor about it. We know that FM tends to affect women of child-bearing years more than any other group. But, FM can show up in early childhood all the way up to the "golden years" and can affect both sexes. If the parents notice that their child is not improving, then they need to speak to their doctor about FM. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"><b><i>Upa</i></b>: Thank you very much for your time. I'd like to interview you again at a later date, especially about children with fibromyalgia and exercise. (Can you hear the roar out there? Quite the controversial topic!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><i><b>Doc</b></i>: I'm looking forward to it. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;"> **********************************</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I hope you're enjoying this interview series. I feel most fortunate that I have access to this rheumy. And as for part of his qualifications, please hit this <a href="http://laughingfrommysickbed.blogspot.com/2013/08/an-interview-with-fibro-pioneer.html"><i><b>link</b></i></a>. It's really worth your while to go there. And, of course, you may want to read the second interview he granted this blog (<a href="http://laughingfrommysickbed.blogspot.com/2013/08/friday-tidbits-interview-2-with-my.html"><b><i>here</i></b></a>). I truly hope that there are those out there who find this interview of help. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">As alway, I hope everyone's doing their level best, only better. Here's to a good week. Ciao and paka! </span><br />
<br />
<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
<br />
<br />
irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com3tag:blogger.com,1999:blog-7385285973919124831.post-74654075038101690862013-12-06T06:54:00.000-05:002013-12-10T03:08:15.921-05:00Friday Tidbits: Hunger Games & Give Me Attitude?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnWRTdaPPzaHjo6emspm-IzKN0sGfkwkkk_UAmdMz1z64nSk4KtHRmw_Fg8pHOvVnmvEO3ZakUN8TXx8k1RJCFAxVy7Wc_FS4Ew4Pbk7MGigpAkE_dmCk-l6B4eT5EwVxzkMV7-dxssfc/s1600/IMG_4557.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnWRTdaPPzaHjo6emspm-IzKN0sGfkwkkk_UAmdMz1z64nSk4KtHRmw_Fg8pHOvVnmvEO3ZakUN8TXx8k1RJCFAxVy7Wc_FS4Ew4Pbk7MGigpAkE_dmCk-l6B4eT5EwVxzkMV7-dxssfc/s320/IMG_4557.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif;">Oh yeah...I've had it with ER attitude....this old girl (moi, not just JL) is on fire! </span></b></i></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><span style="font-family: Trebuchet MS, sans-serif;">OMG! I have finally figured out what it is about <i>The Hunger Games</i> that has captivated me so much.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">In the last few days I've spent hours on YouTube watching Jennifer Lawrence interviews because I can't seem to stop thinking about the movie and the book.<i> </i> I don't think I've ever identified with a movie or book as much as I have with <i>THG </i>and have tried to understand what it is that has gotten under my skin so much. In trying to figure out why this "obsession" with<i> THG, </i>l came across one interview which led to another and so forth. But it was the David Letterman interview of last month that made me stop and go, <i>HUH</i>???</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">First of all, I didn't realize how funny, charming, self-deprecating, honest and even witty JLaw is. When I stumbled upon her interview with David Letterman I couldn't believe what my eyes were seeing and my ears were hearing. Evidently, JLaw had three weeks of stomach pains to the point where she was forced to cancel a few interviews promoting <i>The Hunger Games: Cathching Fire</i>, finally going to an ER where an endoscopy was done.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">She was/is having problems with her intestines and has actually been vocal about it, even making fun of herself. Example: she went to the ER thinking she had an ulcer but found out it was a "fulcer."</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And so, one of the seemingly last taboos of Hollywood has been discussed - that is, by a person who's under the age of 80 - and I'm not sure 80-year olds have gone "there" either. So, good for Jennifer! What's not so good, however, is the reporting of what her problem actually was, by those who are <i>not</i> in the know. A few papers had the nerve to say it was "just gas." (Last I've read or heard is that her lower intestines need to be checked out - there'd been no time.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">It took JLaw's gutsy admission (pun intended) during the Letterman interview for me to finally realize why I've been so "obsessed" by<i> THG. </i> One of the themes in the movies -and the books - is the helplessness one feels when the powers-that-be take away the power of a population and what that population is forced to do. Worse, it's also about what happens when a population is brainwashed. And finally, perhaps <i>worst</i> of all, is the price one pays, psychologically and physically, when a people are forced to go against one's standards and stoop to the level of those around them. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">So, what does all this have to do with ME/CFS/CFIDS and fibromyalgia? And why this, why now? Why write about JLaw and <i>The Hunger Games</i> yet again?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Let me tell you, I have felt helpless with each of the six ER runs I've had since October. Like many who are reading this, I felt completely at the mercy of the staff, most especially when I knew that I was getting misinformation, bad treatment, <i>WRONG</i> advice and a whole lot of other incredible ....let's call it "stuff" instead the other "s" word I'd like to use, especially given what part of the body both JLaw and I are having problems with. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">So, what does all this have to do with ME/CFS/CFIDS and fibromyalgia? It's bad news for us. The attitude and hostility that one encounters in just about <i>any</i> God-forsaken ER now is just about par for the course for just about any health problem which appears in the ER, visible or invisible. I've known of people who've had this happen to them, but in the last few years the GOMER syndrome has become so out-of-hand that I feel I need to write about a blatant example of what happened to me during ER run #3.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Oh dear. I just realized that some of you may not know what GOMER stands for. Hmmm. OK, the short version: though originally used for demented elderly patients, this "sweet" phrase evolved to mean just about anyone who comes into an ER and the staff (read "doctor") feels that patient isn't worth the "staff member's" time. It stands for "Get Out Of My Emergency Room" and an example of the usage is: "Get that GOMER out of here!" This expression is used throughout the States. Shocked? Well, as long as we're talking, how about SHPOS? That acronym is also <i>often</i> used by ER staff and stands for "Subhuman Piece of Sh*t." (Imagine raised eyebrows.) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Back to Jennifer Lawrence and <i>The</i> <i>Hunger Games</i> and my identifying with it all. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">When you go to an ER, you become helpless. You have no power, no matter what "they" say. (Keep this statement in mind below when I describe my nurse, please.) Worse, you stoop to their level because you have no choice. Finally, all too often you find yourself ticked off with yourself for resorting to their game(s), even if that behavior is the only means for survival.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Which brings me to an incident during one of my ER runs last month. I've wanted to write about this episode but no matter how I wrote it, it would come out with me sounding petty. On the other hand, it was such an unthinkable and unimaginative incident that I felt I just had to get it off my chest - as well as to forewarn others. And I use the words "unthinkable" and "unimaginable" in the strictest sense, not as an expression.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">For brevity's sake, I'm not going to go into everything that led to the incident. Be assured that what I leave out is not something that might portray me in a negative light. I'm trying to spare you, my lovelies, from a dissertation.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">With this visit, I'd been in the ER for quite a while, for at least a couple of hours I want to say, without a doctor coming into the room. Without a doctor coming in, nothing can be started: no tests can be ordered, no medication given, nothing other than your vital signs documented, such as temperature, heart rate and BP. Mind you, I was so ill and in so much pain that I'd called an ambulance. (Imagine an eye roll here: the ambulance experience is yet another issue I've been meaning to address, but again, afraid I'd come across as sounding petty.) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Despite the pain, I'd made the decision not to take any pain medication in the hours before going to the ER, because I didn't want to mask any symptoms. I needed to get to the bottom of this mess because I'd spent a day (plus?) howling in pain, into pillows to muffle the sound. I knew sometimes the howl would escape the pillow and worried that the neighbors might call the police, thinking there was a murder going on in our house. (Yeah, yeah. I know. But I couldn't help being concerned that those poor neighbors were worried about how they'd feel if there <i>HAD</i> been a murder going on and they hadn't called. I know: I'm such a "nice, thoughtful" person. I told you I was "shallow"! - see <a href="http://laughingfrommysickbed.blogspot.com/2013/11/shallow-me.html"><b>link</b></a>!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">At any rate, when I arrived in the ER, rudeness and tension were in the air. Walking into the ER - OK, being <i>rolled</i> into the ER on a gurney - I could feel what I want to call "bad vibes." I hesitate to use that phrase, "bad vibes" because I don't want to sound too much like a displaced hippie. On the other hand, we all know that feeling when the little hairs at the back of your neck stand up and you just want to ignore that signal. Note: when we do ignore it, it's never a good idea - we should feel lucky that Mother Nature gave us that signal, for survival's sake.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">There are two incidents that were just plain odd, weird, unimaginable which I'd like to relate:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I'd done some tweeting in my ER room, which helped the time go by faster, but more importantly, it helped to distract me and deal with the pain more easily. I was working hard on not screaming in pain and not crying. However, things finally got so bad that I wanted to call the nurse with the little do-hicky they give you to press in order to signal that you need help. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">First, it took a while to find the "do-hickey." Then twenty minutes <i>PLUS</i> passed and no one had checked on me. Keep in mind that the door was closed so I could have fallen off the bed or could have been having a seizure and no one would have known - nor cared.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Finally, not able to stand the pain any longer, I grabbed the yoga pants I'd thrown into my handbag, and was in the process of putting on my t-shirt over my (home) nightie when my nurse came in. One look at me and he demanded, "what do you think you're doing?" I didn't yell, I simply said, "I've been here for well over two hours and haven't been seen by a doctor. I'm feeling worse than when I was brought here so I'm getting out of here before I feel even worse than I do now." </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">The male stocky-ish nurse stepped into "my space" and said, "that's your prerogative, you can leave anytime you want," blocking my way to the door. I stepped sideways to get around him and he again said, "you can leave any time you want, it's your right" as he stepped sideways to block my way out yet again. This little dance went on for a few more rounds. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I couldn't believe it! He'd puffed up his chest and brought it to within a couple of inches of mine! He was in my space and in my face. He was saying the correct thing, "you can leave anytime you want, it's your right/prerogative" but he was doing the <i>opposite </i>in actual fact, not allowing me to leave. You can't imagine what I wanted to do to him and had to work ever so hard to stop myself.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Another "discussion" ensued when he said the doctor would be in to see me in a "moment," a word I've learned to despise because of situations like this. I wanted to know his definition of "a moment." </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I might add that this "young man" had been my nurse before and that was a joke. A real mess. So many things so wrong that I wouldn't know where to start.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">But back to the ER run I've been discussing. Time had gone by, the doctor had finally been by and tests were being run. Yet everything was just so "off." Everything was an adversarial situation. More misinformation as well....</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Eventually, things had "died" down and the nurse and I were in the room alone again - we were waiting for the doctor and lab results, I suppose. I wanted to make peace of some sort but I also wanted him to know that his behavior was not really acceptable - in <i>anyone's</i> world, I wanted to add. Furthermore, I hadn't said anything about his unprofessional behavior (and a couple of lies) during at least one other visit, deciding to let things go. I never imagined I'd have the misfortune of having him again and I was also just too sick to carry on any sort of talk about "wrong things." And that, as it turned out, had been a mistake.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">So as kindly, but firmly, as I could manage, I addressed the problem of what had happened. I was not going to let this go lightly. After all, this was my third ER run in a month and I wasn't being treated nor helped. Pain was out the wazoo by now. Furthermore, rudeness of any sort is just not OK in my book. Unprofessionalism is also not OK in my book. I also worried what would happen if I had to come back to the ER a fourth time. I was between the proverbial rock and a hard place of before: I didn't want to burn any bridges but I also didn't want to get this sort of treatment again.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And so I said something to the nurse about attitude. Wow! What a blowup!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">"<i>ATTITUDE</i>? You think I gave you attitude?" Now he's in my space again - in my face,<i> again</i>. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">"<i>ATTITUDE?</i> You think I gave you <i>ATTITUDE</i>?" I'm stunned. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">"You think that was attitude? I can give you attitude! You want attitude? I can show you attitude, right here and now," finger pointed to floor for the "here."</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And that's when I sank to his level - I'd had it! How dare he? I wanted to say, "are you on drugs?" I mean, where does this sort of insane talk come from? I said, "OK, give me attitude!"</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">"<i>ATTITUDE</i>! That's not attitude, you've obviously never seen attitude, I can give you attitude! I can show you some <i>REAL</i> attitude." </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">This sort of trash talk wouldn't stop, making a couple more rounds, and by now I was genuinely interested in what kind of attitude he could give me. I really wanted to see it. OK, so part of me worried he might have a stroke or perhaps a heart attack because his face was getting rather red and if there were no veins sticking out on his face as he was getting more agitated it would have been only because those veins were in too deep to show. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">But you know what they say about bullies. You confront them and they run the other way. And I admit: Lordy, but I hoped it would work here! But, yes, I was also curious at this point. (Shoot me! I'm human! Uh huh? How many of you would also have wanted to know what attitude he could give! Thought so! ;) )</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">I said "Come on, give me some of that attitude you think is going to 'impress' me! Show me what you've got. Go on! Give me your best <i>ATTITUDE</i>! I've raised 3 kids, I'm old enough to be your mother, so *I* know attitude and I'm not sure you can live up to the attitude I've seen in my life." </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">At that point I think he realized how out of line he was. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">There's so much more to the psychological games that were played that night-into-morning. There was so much unprofessionalism and bad medicine done that day. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And note: this is the visit I was told I had pancreatitis and yet sent home without having been hydrated with an IV bag, given no medicine to treat the pancreatitis and given no instructions regarding diet - you need to rest the pancreas and not eat. (There are actually a few other outrageous medical actions here which I'm too exhausted to address. In other words, I remind you that you're reading a very abbreviated and sanitized version.)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And I ask you, who the H-ll sends home a person with pancreatitis anyway - and one running a fever!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Like <i>The Hunger Games</i>, I felt that I was in a life and death situation - there<i> was</i> a distinct possibility I could die with a bum pancreas if it was left untreated. As it was, a few weeks later I had to be hospitalized for ten days with unbelievable level of "illness," to the point where things could have turned fatal. Two weeks after that hospitalization, I had to be hospitalized yet again for a few days. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">When Katniss had the "nerve" to wonder about the way the government was treating their citizens, I had to wonder about how the ER treated its patients. Just as a government exists for the people, a medical system exists for patients. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Katniss didn't want to kill anyone, to change into a person she never wanted to be. I turned into someone I'm not when I stooped to my nurse's level and I said, "go on, give me attitude." </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">What's most unfortunate is that this sort of behavior is not a fluke. There <i>IS</i> an attitude problem when ER staff have their own language with includes derogatory terms such as GOMER and SHPOS and too often think that waiting for 4-8 hours is not unreasonable. There <i>IS</i> something terribly wrong when ER staff thinks that saying one thing one moment and then changing their minds to the opposite of what was said is normal and fine (discussed in a previous post in regards to pain medication). There's a real problem when there are electronic records that the doctors relies on solely without taking a patient's history - but that's opening another can of worms.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">What's most unfortunate, however, is that what I've pointed out is happening across the board. And yet some people wonder why <i>The Hunger Games</i> became such a hit, the books and the movies? These things are not just frightening, annoying and uncalled for, but dangerous as well. Hey! What would have happened if "Nurse Attitude" had indeed keeled over from a heart attack when he went ballistic? It would have been a bit of a complication. More complications I do <i>not </i>need in my life!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better! Wishing everyone a very gentle and safe weekend, ciao and paka!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Note: I've not seen <i>THG's Catching Fire</i> nor read the book yet: gotta, though! You never know what survival skills and necessities this ol' gal might learn to be put to future use! ;)</span><br />
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<i><b><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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</span></b></i></div>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com17tag:blogger.com,1999:blog-7385285973919124831.post-48801779045092806162013-12-01T22:44:00.001-05:002013-12-07T00:33:22.048-05:00The Hunger Games and Christmas Survival<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcvmToO6PH6ebgxm7lUtMtW5farQAsrlg8xE2gW4vmBj-zIYb0RbX3DyU529Q6Ngul2ZIue-uceNEbdC_V-yvA6wHPTDPwdm4gHh5eMhpptO2fjktItACTjiI48RW7lmZovxIew8wFzys/s1600/2001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcvmToO6PH6ebgxm7lUtMtW5farQAsrlg8xE2gW4vmBj-zIYb0RbX3DyU529Q6Ngul2ZIue-uceNEbdC_V-yvA6wHPTDPwdm4gHh5eMhpptO2fjktItACTjiI48RW7lmZovxIew8wFzys/s320/2001.jpg" width="247" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><b><i>A bit of the insanity of taking three little ones to visit a Santa display.....I'm not really as jaded as I sound! </i></b></span></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><span style="font-family: Trebuchet MS, sans-serif;">It's now officially that time of year again. It's finally December, the month I dread most. Why, you may ask? </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Well, I've long said that I think Christmas should be celebrated only every four years, like the Olympics. After all, getting though the holidays is truly worthy of an Olympic event. Your need of stamina is the least of the problems. Remembering who should get gifts is the least of them as well. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Anyhoo... that's the inside-my-head thing for the day! I'm not proud of this feeling, I must admit. However, it is what it is. Truly, I must not be the <i>ONLY</i> person out there who feels this way all too often? Does the word "humbug" ring a bell? ;) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">It's been an unusual couple of days in a very nice way. I'd realized that I'm probably one of very few who hadn't seen <i>The Hunger Games </i>- the original version - and with all the press for the new installment of the planned trilogy, I suddenly started wondering if I was missing a huge global event, common to all. I was suddenly reminded of the summer in camp when I (and my fellow campers) must have been the few in the world to have missed the moon landing. To put me out of my misery (read: family feeling sorry for me because I'd just gotten home from the hospital) the movie appeared in my player. (Imagine the curses as I tried to figure out the newfangled system that I have yet to master, despite daughter-who-is-pitying-me trying to wrestle with the contraption.) </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Let me just say that to me (jaded soul that I am), the holidays also mean some pretty cruddy TV and so I realized that if I want to survive the holidays with any sort of sanity at all, I'll need to figure out how to watch movies on my "favorite mobile devices." Yikes! Seeing those words, "favorite mobile devices" put a chill through my body as I read this new way of watching movies. But I've never cared for holiday specials which I find infinitely boring. And I resent the fact that our favorite shows are held up. Um ... <i>Scandal</i> anyone? Love, love, love the show. (And the last few episodes have been fantastic!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Back to topic at hand: I really loved <i>The Hunger Games</i>! Yay! (Daughter in the background finally said, "Exactly <i>HOW</i> long has it been since you've seen a movie?" getting a bit weary at all my oohing and ahhing.) The costumes were incredible. Makeup: wow! The premise was gruesome, yes, but fascinating. There's so much attention to detail. I was hooked, right from the first moment. The only thing that took me out of that world were thoughts where I wondered how a certain thing came to be, how it was treated in the book I'd yet to read.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">And thus, a first-time experience: every five minutes or so I couldn't stop wondering what the full story was about this character or that, why life became the way it had. I couldn't wait to read the novel. Normally, I read a book and a couple of years later see the movie and, of course, I'm disappointed. Or, if I see a movie first and then read the book, I wonder why the book had all this unnecessary information, background, plots. Too much clutter.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">Thanks to Kindle I started reading the first of <i>The Hunger Game </i>series almost immediately and am now about two thirds of the way through the first book. Yes, fascinating! But I've gone a step beyond. Suddenly I find myself putting down the "book" (it <i>IS</i> on Kindle so it feels funny calling it a "book") and watching the movie to the point where I am in the novel. Bliss! This is the first time I've ever "savored" a book, like hubs has a tendency to do. Normally, I rip through books - especially since good old ME/CFS and fibromyalgia don't allow me to retain much and if I don't get a book down in one fell swoop, by the next day it is completely gone. But with<i> Hunger Games</i>, I go back and try to figure out a scenario that fits the movie, book and my imagination until I'm in a good and satisfied place.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">What's even better is that despite fibro-brain, I can understand all. It's a young adult novel but I don't feel being catered to, being talked down to. It may be in the same league as Ann Benson's novels, most especially <i><b><a href="http://www.amazon.com/The-Plague-Tales-Ann-Benson/dp/0440225108/ref=tmm_mmp_title_0?ie=UTF8&qid=1386333213&sr=1-1">The Plague Tales</a></b></i> (taking place in the past as well as the future). I've not read Margaret Atwood's <a href="http://www.amazon.com/Handmaids-Tale-Vintage-Classics-ebook/dp/B003JFJHTS/ref=sr_1_1?s=books&ie=UTF8&qid=1385952010&sr=1-1&keywords=handmaid%27s+tale"><i><b>The Handmaid's Tale</b></i></a> in ages, nor Marge Piercy's <b><i><a href="http://www.amazon.com/He-She-Marge-Piercy-ebook/dp/B004BXA3A4/ref=sr_1_1?ie=UTF8&qid=1385855540&sr=8-1&keywords=marge+piercy+he+she+it">He, She and I</a>t </i></b> but I'm truly enjoying this first book of <i>The Hunger Games</i> and am not sure the aforementioned books are too far superior. There are so many layers to the book as well as the movie. Yes, I'm jaded when I hear about "coming of age" books but the moral issues here alone keep me turning things around in my head. I guess you could say I'm interested in the "coulda, woulda, shoulda."</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">For anyone who wants/needs another few recommendations to escape the holiday madness, I also recommend <a href="http://www.amazon.com/Outlander-Diana-Gabaldon/dp/0440212561/ref=tmm_mmp_title_0?ie=UTF8&qid=1385855627&sr=1-1"><i><b>The Outlander series</b></i></a> by Diana Gabaldo about a time traveler between now and the 18th century. Just the medicine aspect kept me fascinated. I made the mistake of bringing one of the books on vacation with me - and had to end the book before I'd go to see any of the sites I'd so looked forward to. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I'm not really a reader of science fiction but these books really do capture the imagination. You might just thank me for these titles when TV is running the upteenth Christmas showing of Peanuts and/or the Muppets. And now, back to disappearing into the <i>Games</i> and avoiding the holiday madness for another few days! </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better! Ciao and paka.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Note: Sorry, I had the wrong link to Ann Benson's <i>The Plague Tales</i>. It's been corrected. Thanks! </span><br />
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<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com6tag:blogger.com,1999:blog-7385285973919124831.post-31185399408732087412013-11-30T03:41:00.000-05:002013-11-30T18:45:34.367-05:00Checking In & Updates<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;"><i><b>HELP!</b></i></span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">A very quick "hi" since I feel I'm neglecting quite a few friends out there. Oh good grief, I've taken my night meds so I really shouldn't be writing. I </span><i style="font-family: 'Trebuchet MS', sans-serif;">KNOW</i><span style="font-family: 'Trebuchet MS', sans-serif;"> I'll regret it in the morning. I'll be upset and think, "your brain told you not to go there! Why did you do it?" Well, it seemed like a good thing at the time - that'll be my answer to myself and hopefully things won't be too bad. (Right! Huh!)</span></div>
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Also, I'm beginning to realize my posts don't need to be earth-shattering info all the time (took me long enough!), that I don't need to cram every thought I've had into one long reading, and furthermore, that they do not all need to have a huge purpose with life lessons thrown in. In other words, I guess I need to loosen up. Just one problem: I'm not a person who can loosen up, ever, much as I've always tried! Ask my family. Ask anyone who's ever worked on me from doctors to masseuses to phlebotomists to those who know me well. It just doesn't happen. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">But to catch up those who aren't on Twitter, you've sort of missed a few "adventures" of this spoonie who is really getting ticked off with the complications from ME/CFIDS/CFS and fibromyalgia. Last we "spoke" I'd finally had "the works" done (hair, lashes, brows). Unfortunately, I had to stop by one of our local hospitals for an X-ray after our big day out in order to see what's going on with the painful and limited motion in my left shoulder. Turns out that I'd somehow managed to mess up my rotator cuff. (See <a href="http://laughingfrommysickbed.blogspot.com/2013/11/shallow-me.html"><b>this link</b></a> for more on what great things happened that day!) </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I'm hoping to bring us up to date because it's another thing I can laugh about...well, sorta. But there are a whole bunch of things I'd like to talk about so let's pretend this is a "Friday Tidbits" with bullet points. I'm going to tease you a bit. These bullet points will serve as a reminder of what I want to talk about this week. Yes, folks, I'm going to try mighty hard to get back to posting on a more regular and frequent basis. I must get away from the getting sick and hospitalized thing. Uhhhhh..... My plan - the stories behind the following:</span><br />
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<li><span style="font-family: Trebuchet MS, sans-serif;">Yes, ladies and gents, you may have realized why I'd gone MIA again. It was yet another hospitalization! <i><div style="display: inline !important; font-style: normal;">
As I laid in pain, nauseated, I have to admit that shallow me was ever so thrilled that I happened to take a bath and wash my hair before we made the ER run. More on this later - both medical issues and "shallow" ones as well. In fact, I did manage a very rudimentary mani while in the hospital. More on this later. Standards must be kept!</div>
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<li><span style="font-family: Trebuchet MS, sans-serif;"><i>MY</i> new theories about what's going on. Well, perhaps not what is going on, but a possibility of why it's going on....</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">And how could we have Thanksgiving without my addressing food? There's a lot here. Also, if I can get my act together I'd also like to occasionally give you a few recipes or food ideas which keep me going. I don't know about you, but I can never decide what I want to eat, <i>if</i> I should eat and so forth. So, recipes and ideas, might be coming down the pike.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">I've a few more ideas for what to add to your prepared hospital (or travel) bag. I realized I needed these additions the hard way. </span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">What have I been reading? Not much, mind you, but I'm enjoying what I've discovered.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">I can't believe I'm going to say this but...for the first time since I was a elementary school girl, I'm going to make a few real thought-out New Year resolutions. (I can't wait to see the backside of 2013!) Instead of just grabbing the first couple of ideas that pop into my head at the last minute, I'm going to give this some real thought. I think I have one badly needed resolution figured out which will help others. We can even <strike>egg each other on</strike> support each other with this.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Making a list of what makes me happy and puts me in a good mood - and why I need this list. (It's a must!)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Why I need to work hard on making changes which will put me in a mood light enough to really have no problems saying things which I'm grateful for at next year's Thanksgiving table. I know. I hate to sound ungrateful but I'm putting this in at the moment because I know that there are too many of us out there who have problems coping with the holidays - and I wouldn't want anyone to think that they're alone in the not greatest of mood mode! (Experience here!)</span></li>
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<span style="font-family: Trebuchet MS, sans-serif;">These are just a few of the topics I hope to discuss in the next few days/weeks. Some have to do with the hospitalizations (the one this week and the one just prior) and the bit of brainwashing that goes on. Or as I like to call it, "propaganda." </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'm praying that my health allows me to follow through with that which I want to do. Following through and staying busy in general: now <i>THAT</i> always puts me in the best of moods! </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better! Ciao and paka.<br />
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<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i></span></div>
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irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com6tag:blogger.com,1999:blog-7385285973919124831.post-35341800804929463792013-11-20T16:28:00.001-05:002013-11-20T17:20:43.161-05:00Shallow Me?<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;"><i><b>I'm not as bad as some members of my family! My son getting a pedicure by way of fish in Southeast Asia, on holiday with his wife. </b></i></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We've been oh-so-serious here lately and I thought, it's definitely time to lighten things up a bit. And so I have a have a confession to make.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am a shallow person. Yep, it's true. I really and truly am. I cannot handle having someone see me at my worst. These things really bother me.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When I was in the hospital writhing in pain, as a doctor or nurse would examine me, all I could think about was how bad was my breath, when was the last time I'd had my hair cut, dyed, highlighted and low-lighted? How much were my age spots showing? How bad did my armpits smell? I think I realized I was totally nuts when one day my GI was upset about how distended my stomach was and I suddenly remembered that I had scars there from my gallbladder surgery last year, laparoscopically, and wondered if my surgeon (aka "Dr. Hunk") had had a chance to admire his work. Call me silly, but I think he could care less about the scars. But as the GI guy was worried about my distended stomach I was glad I'd lost my Cymbalta weight and that the belly wasn't as fat as it had been just a couple of months ago. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So it wasn't a huge surprise that when I got home I immediately went to work on hubs trying to get him to see why things couldn't go on like they had been: I was in dire need of getting fixed up. I needed to get the eyelashes colored again, the brows dyed, the hair done, pronto. Worse, I realized that I had many doctors appointments scheduled and doing all that work to look human as I'd get ready for an appointment was just too much. I couldn't even begin to figure out where my eyebrows were in order to color them in, just an example. My hair, so thin and getting thinner by the day, needed rollers to give it some umph if I were going out of the house and that's just too much work. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So, we finally made the big appointment. I go to a large city for my works, a bit over an hour's drive and way too much construction and traffic to deal with. I woke up ill that morning, running a bit of a fever but I realized that the appointments would only be postponed, not cancelled indefinitely. And, I realized that the reason so many months had gone by since my last appointment was because I'm always getting sick or am sick or getting over being sick. It was time to bite the bullet and just do it. No matter what, I wouldn't find a good day and each day that passed I was looking worse. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Nope. Hubs wasn't going to talk me out of it. I was strong and I could handle it. Hubs gave in, realizing I was impossible. He finally said the words I've waited to hear for over ten years, never thinking I'd hear them. It was, hubs said, time to find someone who could tattoo my eyebrows in. I pushed the envelope and added, "and eyeliner too!" He nodded. So, now if only I can stay 'healthy" long enough, I need to find a good, reputable tattoo artist. We are talking about the face, after all....and the eyes too. That's prime real estate, let's remember. We do not want the word "whoops!" coming out of anyone's month.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Now I need to explain something: just how much I <i>loathe</i> getting my hair done. I would rather have a root canal. I would rather have surgery. A hysterectomy is preferable to getting my hair done - and I've had one of those so I know what I'm talking about! Those of you fortunate enough to have hair will never understand this feeling. My hair is definitely my Achilles' heel. There has always been so little of it. Bad enough that my mom, my daughter and my BFF all have enough hair to fill up five women's heads <i>each</i>. Now with the hypothyroidism, I have less than even my usual. I've seriously considered just going bald, getting it just shaved. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">OK...you get the idea...I think. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So, after getting everything done we were on our way home. For once I didn't try to con hubs into a bit of a shopping trip. In fact, when we hit the elevator button, I was so "tired" that I just sat down on the floor. I could care less how it looked. Manners? Who cared?!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We got to the car and I couldn't believe it. My left arm couldn't bend to buckle the two metals parts of the seat belts together and after hubs did it for me, the shoulder wouldn't stop hurting, and a lot. I finally told hubs that once we got to our town, we'd need to stop at the ER before going home. By the time we reached the parking lot of the ER, I was holding back tears. I'd taken pain meds and they weren't helping. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To make a long story short(er)... The kind doctor who had admitted me to the hospital last time I was there came in. In all the madness when I wrote my last few posts, I forgot to mention that we did finally get a good doctor--- after I was horrified to see "Dr. Dear" of the infamous pancreatitis fiasco had come into the room. He had turned around and left and the charge nurse (who knew hubs) got a very good doctor to come in. She was worried that we wouldn't like his ponytail. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Was she insane? Worse, did she think <i>WE </i>were insane<i> and</i> unreasonable? Not that it mattered, but I loved the ponytail. It showed that he didn't care what bureaucrats thought... We hoped it meant that he only cared about medical care. Not only that, but that probably meant that he remembered the Vietnam War. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">You must read my post (<a href="http://laughingfrommysickbed.blogspot.com/2013/10/friday-tidbitsthe-vietnam-war-where_4.html"><b>please</b></a>!) where I explain why our new doctors are, frankly, so cr*ppy. Oh come on.... I could care less about lawsuits anymore from anything I say, especially since I know that I speak the truth and I do not exaggerate. My new mantra is, I want them - the robots and unenlightened - to fear <i>ME</i>. No, I don't want to antagonize, but I've finally had it with the bullying and the incompetence. I am ticked off, big time, and I'm not taking it anymore. You are nice to them and they walk over you, taking you for a weakling. I'm not going there anymore. And I have yet to write about the bully nurse, a huge story. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So, Dr. NicePonytail immediately realized what I had suspected. I didn't know what a "rotator cuff" was but those words just kept popping into my head during our drive home. It just sounded right and felt right.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Now I'd had pain in that shoulder for weeks but we all thought it was referred pain from the pancreatitis. But that morning as I was getting ready for my "beauty day," I felt that arm pop. I said nothing. It was minimal in the scheme of things.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But now it was screaming. Furthermore, my BP had broken a record. They got another machine, not believing the reading. My usual 90/65-70 was a whopping 190/101. Ah... how I love the BP. It my "tell" to me of how I'm doing.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The good news is that I do not need surgery. The bad news is that I need to keep my arm in a sling for a few days and then will need physical therapy. The danger is a "frozen shoulder" if I don't do things right.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Now, how was my "vanity issue" in the ER? You'd think good, given what I'd done all day. But, my lovelies, how you'd be so wrong! I was explaining to anyone who'd listen just why my brows looked so...well, Groucho. Some of the dye was imbedded in the skin, a usual thing that goes away in a couple of days. Of course I always need a few days to get used to the color and cut of my hair. There was a bit of dark color under my eyes I couldn't disguise, from the lash coloring....</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I can't win, can I?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But there is wonderful news. The gift of laughter I've always taken for granted and was so afraid was gone permanently, as a result of the Cymbalta fiasco, has returned. If the run to the ER with the arm didn't make me laugh at my luck nothing would bring it back. So I am happy that this arm did this little trick. I may feel differently if it doesn't heal right, but for now I'm thrilled I have something absurd to laugh at.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As to the shallowness of my being? I'm not sure that is curable! It was honestly inherited from my mom and if nothing else, I <i>am</i> my mother's daughter.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And on that note, I say my usual. I hope everyone is feeling their very best, only better. Ciao and paka! </span><br />
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<i><b><br /><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
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<br />irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com5tag:blogger.com,1999:blog-7385285973919124831.post-42637055537482207932013-11-19T07:05:00.000-05:002013-11-20T14:45:18.528-05:00Explanations & Understatements<div class="separator" style="clear: both; text-align: center;">
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<b><i>Food, Glorious Food! </i></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This is a very hard post for me to write. I've agonized as to whether I should write about what went on in the hospital - all due to the embarrassment factor, an understatement if ever there was one. Were I anonymous I probably wouldn't hesitate to write about the saga, but there are personal friends here and it's quite embarrassing to write about my latest hospitalization. On the other hand, I keep thinking that what happened to me could very well happen to someone else out there, especially those with CFIDS/ME/CFS and fibromyalgia. I came close to a fatal situation, one I'd never encountered before - and we know how many near-fatal situations I've been in! *Sigh*</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I've also put off writing because there is so much to understand/tell. I'm still processing things after all. But I see that with each passing day things get more complex so I just need to bite the proverbial bullet and get on with it, especially since I've heard from so many of my readers wanting to know where I've disappeared to, what's happened to me, and so forth. Boy do you guys make a "girl" feel good! Thanks! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">OK... A scorecard and Cliff Notes rehash (which are discussed in more detail <a href="http://laughingfrommysickbed.blogspot.com/2013/10/dont-mess-around-with-pancreas.html"><b>here</b></a>, <a href="http://laughingfrommysickbed.blogspot.com/2013/10/pancreatitis-or-red-herring.html"><b>here</b></a> and <a href="http://laughingfrommysickbed.blogspot.com/2013/10/the-latest.html"><b>here</b></a>):</span><br />
<ul>
<li><span style="font-family: Trebuchet MS, sans-serif;">I had three ER runs within a little over a week and each time I was sent home, even when I was diagnosed with pancreatitis. (<a href="http://laughingfrommysickbed.blogspot.com/2013/10/dont-mess-around-with-pancreas.html"><b>here</b></a>)</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Hubs had to use connections to get me admitted on ER run #4. I had refused to go to the ER a fourth time. Some may remember that I felt going to the ER again would be tantamount to the medical version of "suicide by cop," in my case "suicide by ER," but hubs refused to listen. Things were reaching the fatal stage.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Things had become so complicated by ER run #4 that diagnoses were being changed almost hour by hour.</span></li>
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<span style="font-family: Trebuchet MS, sans-serif;">And oh how dangerous things became! </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I ended up spending ten days in the hospital, quite the feat! Might I remind you how difficult it is to be admitted to a hospital at all these days? (A post on that subject in the near future. This is a dangerous trend and effects every one of us - healthy or unhealthy. After all, sooner or later, everyone will end up needing some sort of medical care, no matter how blessedly healthy they are now.)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Doctors employed by hospitals (as opposed to being in a solo practice or even a group practice) will do almost anything to keep you out, much of it thanks to our insurance companies having so much control over our care. (Dirty secrets to be revealed in a future post.) That I spent so many days in the hospital shows the severity of how ill I was, if nothing else.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To say what I went through was painful is a gross understatement. Luckily, once I <i>was </i>admitted, the hospital staff on the floor was fantastic. I was given my pain and nausea meds on time, for example, a <i>HUGE </i>plus. To say that I literally felt as if I was in labor for the first nine days is yet another understatement.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Worse, saying that I was in a very "fragile" state is an understatement. I hadn't eaten in almost 12 weeks by then if my math is right <b>(<a href="http://laughingfrommysickbed.blogspot.com/2013/10/friday-tidbitsthe-vietnam-war-where_4.html">link</a></b>). I got to the point where drinking a sip of water to take my medicine was almost impossibly painful. I would shake and shiver fiercely all the time, a truly awful feeling. Between that and abdominal pain where I felt as if my guts were being torn inside out, along with the nausea, the migraines, t</span><span style="font-family: 'Trebuchet MS', sans-serif;">he chest pain and a host of other problems, jumping off the balcony was starting to look like a pretty good thing to do! (Joke?)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">With the ER #4 run, I knew I would most likely have to get an NG (nasogastric) tube. To say that I ended up having a love/hate relationship with the tube is --- you guessed it: an understatement. Yes, it was really gross to have that tube go into my nose down to my stomach but it allowed me to breathe, a luxury by now. How sick was I you ask? (Pretend you asked: makes me feel better! ;)) The tube went down in one go, an unusual thing, according to my docs. Let's just say I was highly motivated to have that sucker go in right the first time. The thought that five attempts is not that unusual was not something I've ever put on my bucket list. (Heck....even one attempt of putting a tube in was never on any bucket list!)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The funny part? I was dreading having that monstrosity in me for 24 hours: understatement. Huh! I should have been so lucky. But sometimes naivete is a really good thing. That sucker was in for eight days. However, by this point I was so sick that not only was the pancreatitis a mere annoyance but that tube was slowly becoming a great friend. Don't ever underestimate the wonderfulness of breathing! ;)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The most frightening thing of this whole situation is that we have no idea why I ended up where I did. (Yep: understatement!) This is the scary part because how can I keep this fluke from being repeated?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We still have no diagnosis of what's happening to my digestive system. I'm still too ill for a colonoscopy, though hopefully I will be able to have it done soon.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">OK, OK, OK! So what did happen? What was the matter? Enough stalling! But I'm doing this only for those of us who have <a href="http://laughingfrommysickbed.blogspot.com/2013/06/outing-myself.html"><b>IBS</b></a> (Irritable Bowel Syndrome) and/or IBD (Inflammatory Bowel Disease).<a href="http://www.blogger.com/"></a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Simply put I was impacted - from the very top to the very bottom, all cemented. Yes, I had pancreatitis but that was treated with heavy doses of antibiotic added to my IV bag once I was admitted. They had to blast me for over a week to get me back to <i>MY</i> normal - my body was just not letting things go! Laxative and enemas were done over and over again. We all feared that surgery would be needed. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">How desperate was I? I not only wore my cross (which I got out of the habit of wearing when the kids were babies and would try to pull it off) but I even got out my late mother-in-law's rosary - and hung it around my neck because I was so afraid of losing it. Oh yeah... *I* looked normal! And to add to the "lunatic" thing, remember, I'm not even Catholic!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I prayed like almost never in my life before. With the addition of prayers from so many of my friends (near and far, in the States, Canada, Great Britain and even Russia) it must have worked! You, my readers, long-time friends, new friends and my twitter friends, Facebook friends prayed and helped hold me together. For a few days my doctors were convinced that I had either Crohn's or Ulcerative Colitis and were readying me for a transfer to a "major medical center" ranked #2 in the country for digestive disorders, pretty darn sure I'd need surgery. I'm convince that all those prayers helped to get me out of <i>THAT</i> pickle. Thank you all, so very, very much!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">By the time I had some action going on, it felt as if the walls of my colon and intestines were being ripped apart: the stuff was sweeping out and even getting unglued from the walls, which <i>REALLY</i> hurt. Thankfully, these worst days kicked in during the weekend and hubs was able to be there with me as I slowly started going insane from the pain. I kept thinking, "how can things keep getting more painful? What is the maximum? Surely I've reached it." Nope: just as in life things can always get worse, so too can pain get worse and worse and worse as well....</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Once on the floor, my doctors and nurses were horrified by what was happening to me, not to mention being disgusted, and worse, by what happened in the ER. I was definitely a challenge and the diagnoses were changed every day, sometimes twice a day. Testing was constant. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My surgeon (the admitting physician) always had a worried look on his face. Can I say that I love the guy? He's the one who did my gall bladder surgery and so knew that I had a high threshold for pain. He worried and worried about what was happening to me. One nurse said she was sure he was staying up till the wee hours in the night reading all he could to get a better handle on what to do for me - I think only half jokingly. Were it not for the insurance company saying I had to go home, he might have kept me longer. (I was out of immediate danger and he made it very clear that if I had the slightest problem, I was to return immediately to the hospital.) He is convinced that there is something really bad and weird going on and I trust his guts - he has a great record. He's also convinced that I had colitis of some sort in this mess and really wants to get to the bottom of all this.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">My GI would have a worried look on his face as well. He's still not sure what the heck has happened, only saying, "I've never seen anything <i>THIS</i> bad!" and he's been a practicing GI for over 30 years. He'd say this every single day and then give his trademark stare to make sure you understood what he just said was exceptionally important.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I can't begin to explain how much the kindnesses of the staff was needed and appreciated. I loved the fact that the nurses were on 12-hour shifts and I had the same morning and night nurses for the most part. They got to know me well and I got to know them. They knew that if I said I was in a lot of pain, I really <i>WAS</i> in a lot of pain and tried to help as much as possible until my pain or nausea meds could be given. And the fact that we had little jokes going on - well, that made for an almost impossible situation seem easier to handle. So kudos to the staff. (And I have to say Knock on Wood and Tphoo! Tphoo! Tphoo! With the rate I've been going to hospitals I can't risk any jinxing whatsoever!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">After all is said and done, I get very upset when I think how close I was to death because of the incompetent ER. I did everything right. I didn't go to the ER for frivolous matters. I followed doctor's orders. Tests showed that I had problems. Yet it took four ER runs before I finally got admitted and basically only because hubs demanded - in a calm, polite but determined way - that I be admitted. Furthermore, the hospitalization was done because hubs had connections to get me in. What if I didn't have a husband who had no means to get me admitted? I get even more upset when I wonder how those without advocates (friends or family members) go alone to ER's and hospitals and how they are treated. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">The most frightening thing of this whole situation is that we have no idea why I ended up where I did. (Yep: another understatement!) This is the scary part because how can I avoid this "fluke" from being repeated?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">We still have no diagnosis of what's happening to my digestive system. I'm still too ill for a colonoscopy but as I wrote above, hopefully I'll be up for it soon. I am scheduled to see my GI later today. I hope we can figure things out. But to tell you the truth, I'm not sure anything will really be resolved/figured out. It's all too complicated and everything is so overlapped. I have problems with too many systems - immunological, neurological, endocrinological, just three examples - going awry.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">But there is one thing that I did love about my hospitalization. Not once were the words "Chronic Fatigue Syndrome" or "ME" mentioned, nor "fibromyalgia." I was treated like the "real" patient I am. Not once did my doctors blame weird things on my CFS/FM and try to dismissively throw everything into the wastebaskets too many others try to use.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">That was worth its weight in gold.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">So, why rehash my adventures, even though much has been left out for brevity's sake - and also to put my dear readers out of their misery and end this as quickly as possible? Why expose this embarrassing problem? Because bowel problems are more common than we are lead to believe. Because bowel problems can be fatal. I, never in my wildest dreams, could have imagined my scenario. Of course, neither could my doctors! When I told hubs that my surgeon, "Dr. Hunk," said, "you are a <i>VERY </i>complicated lady!" hubs started laughing almost hysterically (understatement) ... certainly hard enough to almost fall off his chair onto the floor.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And there is a final take-home lesson, if I may say without sounding too bossy or know-it-all: persistence. If you feel something is off, trust your instincts and do not accept bullying (more on that too!) nor allow any health professional minimize a problem. Death, after all, is not a good thing: understatement.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span><span style="font-family: Trebuchet MS, sans-serif;">And on that note, I stop. Heaven knows I hope I've made sense here. I'm still in the really bad pain area. As always, I hope everyone's doing their very best - only better! Ciao and paka. </span><br />
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<i><b><br /><span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com12tag:blogger.com,1999:blog-7385285973919124831.post-57998461243704471442013-10-27T19:01:00.000-04:002013-12-23T22:31:20.648-05:00The Latest....<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghRnWiKyAgN-t9e5oosQ6OJNhFU56VfD9bncZgJ2uW0NhglVW2DT9h1FYsHfWVb6WdR7V7oLyyedVUQ1cxm-fA2BH0b_fEENHAm8JC0UE7aES5bLMTgiikY4xFubQEwZJRrxvNDhqhjQQ/s1600/IMG_2065+(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghRnWiKyAgN-t9e5oosQ6OJNhFU56VfD9bncZgJ2uW0NhglVW2DT9h1FYsHfWVb6WdR7V7oLyyedVUQ1cxm-fA2BH0b_fEENHAm8JC0UE7aES5bLMTgiikY4xFubQEwZJRrxvNDhqhjQQ/s1600/IMG_2065+(2).jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><i><b>Worried: I dare not put up the pictures taken in the hospital... call me gutless! </b></i></div><div class="separator" style="clear: both; text-align: center;"><i><b><br />
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</div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;">A very quick note to say that things are moving along quickly. The latest appears to be that the sigmoid volvulus is old news, now discarded as a problem. No, the latest is that I appear to have Inflammatory Bowel Disease (IBD), not to be confused with the usual Irritable Bowl Syndrome (IBS) which is so often seen in those with CFIDS/ME/CFS and fibromyalgia. IBD is a most unpleasant animal, to put it mildly.</span></div><br />
I'm still in the hospital and things are jumping. I have a tube that, on Friday, was inserted down my nose right to the stomach. It's still there. Tomorrow I was supposed to have a colonoscopy but it appears that I'm too weak for that at the moment. A diagnosis needs to be made and so only a sigmoidoscopy will be done. "We" will be looking to see if it's Crohn's Disease or Ulcerative Colitis. Other info will be gathered, I'm sure, but to tell you the truth, I'm just taking all of this minute-by-minute. <br />
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In my better moments I know I'll deal with things because there is no choice. In my sadder and more exhausted moments I am scared and very fed up with all the health issues. I am out of my comfort zone in so many ways. <br />
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When the pity party is over, I try to be mature and tell myself that there are so many out there who are in much worse straits than I'm in and they are happy for each moment in their lives. Let's just say that I am mature in years, but that's just about where my maturity ends.<br />
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My pain<i> IS</i> being managed. That's a plus at this point.<br />
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The diagnosis may also dictate where most of my healthcare will be done: here, locally, or at a large medical center. I'm not even thinking about this aspect at the moment.<br />
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I <i>AM</i>, however, trying to figure out why I've lost all that info that usually sits on the right hand of this blog. Where is it??? I tell you, it's the formatting that gives me the most problems and the blog will the death of me yet. <very able="" all="" always="" am="" and="" are="" as="" at="" back="" be="" box="" but="" computer.="" couldn="" course="" dates="" day="" determined="" dumb="" end="" find="" fix="" found="" frequently="" frustratingly="" good="" have="" haven="" hope="" hopefully="" hoping="" i="" if="" inept="" info="" ipad="" is.="" is="" it="" joke="" just="" know="" lame="" lately="" latest="" left.="" let="" live="" ll="" m="" managed="" meanwhile="" mess="" most="" much="" my="" myself="" n="" nbsp="" normally="" now="" of="" on="" out.="" page="" pieces.="" pieces="" post="" read="" real="" remember="" right="" said="" scary="" search="" see="" shows="" some="" soon="" sorry="" span="" stop="" straighten="" style="background-color: rgba(255, 255, 255, 0);" t="" technology="" that="" the="" there="" thingies="" things="" this="" those="" titles="" to="" tonight.="" tv="" ugh="" until="" up="" watch="" what="" with="" won="" you=""><br />
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</very> <span style="background-color: rgba(255, 255, 255, 0);">So, as always, I hope everyone's doing their very best - only better! Ciao and paka.</span><br />
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</span> <span style="background-color: rgba(255, 255, 255, 0);"><i><b> (<span style="color: #990000;">Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i></span>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com12tag:blogger.com,1999:blog-7385285973919124831.post-22351439922992559792013-10-26T07:37:00.000-04:002013-11-14T11:50:20.595-05:00Pancreatitis or Red Herring?<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: rgba(255, 255, 255, 0);">Another fun day at our home! It appears that I have one good diagnosis that may answer a lot of things going on... finally! I've been admitted to the hospital and if things go well, we might even be able to put together a plan. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Thank goodness that the ER doc who finally saw me felt that things were not what they seemed, that things were a bit off with the pancreatitis diagnosis. GOOD! FINALLY! A THINKING doctor!</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">lt appears that I have volvulus of the sigmoid colon. The other things, including the pancreatitis, appear to have been red herrings. I can't believe this and yet I'm not at all surprised. </span></div>
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</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I hope you can "forgive" my quickly put-together info but I'm not at my best. I'm worn out, depleted, with a head that's swimming. But for four days, I've not eaten in close to 10 weeks now. Furthermore, things may still change, things are still being investigated, but there is a bit of hope that this latest mess might finally be addressed. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I've not done my research about this, so please just keep in mind that this is all "hot off the presses" and things may yet change. And since I'm in a hospital bed, I'm using my iPad to write this up, so formatting, etc will be a problem. Anyway....</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">This volvulus could have developed into a ischemia bowel, where the bowel dies and a colostomy is then done. I admit that I did a bit of crying when they put the tube into my nose down to the lowest part of the colon (way low) because it was and is just so gross, disgusting. Word is that it'll have to stay in for 24 hrs, approximately. There's a lot of stuff coming up, the bile, gases, a quart-full now, and "they're" amazed at the amount. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Who died of this, the twisted bowel? One of the BeeGees, Maurice, if I'm not mistaken. I remember because it was so terrifying to hear that this sort of thing can happened.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">As mentioned above, the pancreatitis was a red herring, according to the doctor who I ended up with. He just got a feeling that something else was going on. I felt better from just hearing the expression "red herrings." I don't know if anyone remembers that a year ago I wrote that I felt all the problems going on were red herrings, masking the real "new, major" problem, and that I was on "The Hunt for Red October." No one knows what exactly is happening, however. Hopefully, more answers if/when my gastroenterologist comes by, as well as "Dr.Hunk," the surgeon who did my gallbladder surgery last year.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">When hubs walked into the house earlier today (that is, Friday, having not had sleep I feel as if we're still in Friday) and saw me, he immediately said, "ER, NOW!" </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I cried hard because it hurt to move at all and I had to walk downstairs, plus get into the car. I was not about to call an ambulance as <a href="x-apple-data-detectors://0" x-apple-data-detectors-result="0" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">Friday night</a>'s entertainment for Dimmeydale, our neighborhood. On the way to the hospital I cried because I was so afraid of getting a tube stuck into my nose down to the nether regions I know nothing about nor care to learn about... I have enough to figure out with the darn CFIDS/ME/CFS and fibro. I was also so afraid I'd get "Dr. Dear." I did. Of course.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Hubs sort of recognized him but wasn't sure if it was from one of my past visits or one who had treated our daughter. It came out of my mouth, before I could stop my words, "oh no, Dr. Dear!" </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">He recognized me, and, thankfully, turned around to leave. At the door he said something I'd not heard or have forgotten, but ended it with, "DEAR," getting "back" at me.I very much wanted to ask him if he felt like a 3rd grade bully in a school's playground. (During my last fiasco of the run to ER I couldn't stand his condescending attitude and finally asked him to stop calling me "dear" at the end of each sentence, that my name was Mrs. BlahBlahBlah.) This was the genius who told me that my pancreatitis was just like a bit of a mild flu, sending me home with no medications, no eating instructions, not even giving VERY dehydrated me a saline bag....</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Anyway, hubs had to phone the administer-on-call to complain that 2.5 hours had gone by and I hadn't been seen by a doctor. No saline, no pain meds, no drinking liquids, no nausea med, NOTHING. No one would give hubs the administrator's name or phone number but with a few phone calls he had the info. The guy was furious and wanted to know how hubs got his name and number - as if hubs was going to squeal on someone and get that person in trouble. You could tell that that spouse of mine was very respectfully yet firmly, blowing the administer-on-call to smithereens, so much so that the guy hung up on him! Hubs called him again and the guy wouldn't pick up the phone. He wouldn't pick up when hubs called on my phone either. I will say no more....</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">For many reasons, the charge nurse knew of my hubs, for good reasons, nothing sinister. She was quite helpful. My main nurse was helpful, as well as my "other" nurse. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Funny: both of the CT Scan technicians remembered me from a few other visits. I was so sick then that my savant-like facial recognition abilities failed. I couldn't remember them at all, nor the ER visit, though I did find that I've posted about it! But as one was rolling my bed back to my cubicle she said, "I hope they get to the bottom of all this, especially given how you were treated before." Wow...!</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">The sigmoid colon hadn't twisted completely (thank God!), it was twisting and untwisting, back and forth. That, plus the gas building up, largely explained the pain, cramping, stabbing, etc. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">A CT scan w/ barium contrast was done, blood, urine. The barium was delicious, of course. In the past few days I've had trouble swallowing one sip of water to take my meds. So imagine how good the lemon flavored barium tasted. (I AM so pathetic, I know!) </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I'm in my hospital room now. So far ok. The nurse seems nice. But boy, are we ever fodder for gossip! I'm actually scared of seeing the GI despite the fact that we traveled in the same circle back when we actually got out and about back in the day. He's also my daughter's local GI and he's been good to her. I'm also worried that I've built up "Dr. Hunk" too much in my mind, afraid something bad will happen to their manners or any number of other things.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">So, that's where things stand at the moment. Again, my thanks go out to so many out there. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">And so too, as always, I hope everyone's feeling their very best, only better. Caio and paka!</span></div>
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<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i></span></div>
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irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com3tag:blogger.com,1999:blog-7385285973919124831.post-49033440937920372672013-10-22T15:02:00.000-04:002013-11-14T11:42:15.234-05:00"Don't Mess Around with the Pancreas"<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">I've heard from so many, asking me how and what I'm doing, so a quick report regarding my pancreatitis. ("Quick"? I said "quick"? Huh! In our dreams, my lovelies!)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <span style="font-family: Trebuchet MS, sans-serif;">It's been nine weeks since I started fasting. If I had any artistic talent at all, I'd make a chart of the events - I know a scorecard would be such a help! And I do want to emphasize that there might be a tiny mistake here and there since I'm not doing my usual obsessive fact-checking. Furthermore, my brain is having difficulty thinking (more so than the usual!) because of the pain, <i>and</i> because I'm<i> HUNGRY</i>!</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I was diagnosed with pancreatitis almost three weeks ago now, though who knows how long I'd had it before diagnosis. Within a 10-day period there were three runs to the ER. The last run showed pancreatitis on the CT Scan and blood work. To illustrate the hostility, unprofessionalism, substandard care, being treated like a number rather than a person (although I think a number would have gotten better care) compounded by the curse that surrounds you if the words "Chronic Fatigue Syndrome" or "fibromyalgia" are seen in your chart, a recap. Mind you, many of the "mistakes" were ones that any third year med student should know:</span><br />
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<li><span style="font-family: 'Trebuchet MS', sans-serif;">I was never given a saline bag to hydrate me. (</span><i style="font-family: 'Trebuchet MS', sans-serif;">HUGE</i><span style="font-family: 'Trebuchet MS', sans-serif;"> mistake!)</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">An abysmally incomplete history was taken.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Ignored were the signs of my fever of 103 degrees (high for a "normal" person, so imagine what it meant in my case because I normally run about 95 degrees) and a BP of 151/I-think 90 (whereas my "lying down" numbers are around 90/65-70). My BP is all too often an indicator of my pain level. Furthermore, I've run a BP over 125 only a handful of times, during hospitalizations.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I was not given anything for pain. (A complicated story regarding this brews in the med literature so I've had to simplify this point.)</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">No dietary advice was given.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">No other verbal instructions were given, only a dinky copy of what is pancreatitis. For more on this, please look at my<b> <a href="http://laughingfrommysickbed.blogspot.com/2013/10/friday-tidbitsthe-vietnam-war-where_4.html">previous post</a></b>.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I was told that my pancreatitis was like a "little flu."</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I was offered morphine but not allowed Demerol, despite 20+ years of hospital records showing that morphine does not touch my pain and only Demerol helps. (Another complicated issue that needs to be dealt with separately.)</span></li>
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<span style="font-family: Trebuchet MS, sans-serif;">So where am I now? Thank heavens there is an Internet and thank goodness my rheumy has been available. I'm definitely doing worse, much worse. This is what I've learned, in the most simplistic form:</span><br />
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<li><span style="font-family: 'Trebuchet MS', sans-serif;">I discovered that my pancreatitis would <i>NOT</i> resolve itself in a few days. Anyone who has pancreatitis is in danger, but with MECFS, aka the DD, it's much more dangerous and complicated. I'm learning this the hard way.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I also discovered that I need to fast in order to rest my pancreas. As I wrote in my last post, coincidentally I had started fasting on my own weeks before. How much worse would it have been had I not started fasting? I'm now on clear liquids only. We'll introduce juice after I am pain-free (or in much less pain).</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I am nauseated most of the time and need to take anti-nausea meds all too often.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">The pain is out the wazoo. No more squeaky wheel gets the attention: everything is screaming out at me. It encompasses various parts of my abdomen/torso, my back, my left arm/shoulder, the left chest area most of the time, my right side occasionally, the pelvic region, the back of my neck. It often hurts to breathe. It hurts to eat (I tried a few times last week, thinking I was doing better). It hurts to drink. </span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I continue to run fevers throughout the day.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">Except for those four days last week when I thought I could handle some food, I've been "fasting" for nine weeks now.</span></li>
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<span style="font-family: 'Trebuchet MS', sans-serif;">What is the pain like? Well, it's a lot of different kinds of pain. I'm beginning to think someone out there has a voodoo doll of me, having a heck of a lot of fun sticking it over and over again! ;)</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">It is severe cramping, as if someone is stabbing me with an ice pick over and over again. It's also as if someone is taking a chef's knife and twisting my guts. It feels as if everything is inside out and I need to throw up my guts. These are just a few examples of the various pains. I feel a tiny bit better if I don't move at all. I get a tiny bit better if I don't drink anything at all. Finding a position to lie in is a challenge.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">How bad is it getting? Today I bent over and suddenly bile started flowing from my mouth. Talk about "freaking me out"!</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I should most likely be in the hospital. Thus far, however, via various means, I'm being treated at home because we cannot trust the hospitals any longer. Most are aware of the expression/phenomenon known as "suicide by cop," thanks to TV shows such as "Blue Bloods." I <i>KNOW </i>that were I admitted, it would be "suicide by hospital." </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">There is a famous saying in medicine, taught to medical students and definitely first-year interns: "Eat when you can, sleep when you can, but don't mess with the pancreas." (Usually another word, "sh*t," is used in place of "mess.")</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Well, the ER staff must have remembered only a little bit regarding the pancreas. And, unfortunately, they forgot the gist of the saying: that the pancreas needs help through use of resting the pancreas (diet and fasting); that the patient should be hydrated (saline bag); that the incredible pain needs to be dealt with (Demerol); that the patient needs help by way of medication (antibiotic). None of these things were done for me.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">Yes, I'm ticked off. Really, not much makes me fear when I get "sicker." Those who read my blog on a regular basis may remember that I never knew I suffered migraines since early childhood until I went blind in one eye (it lasted only a couple or so days) during my second pregnancy, a "migraine equivalent." (Hubs panicked: I thought it was funny!) I student-taught an entire quarter/semester with an infected appendix - this was going from the exploratory surgery table back to school in a week (and driving from New Jersey to Virginia, quite the distance!). I was so intent on getting my BA in a little more than three years (rather than the usual four) and nothing was going to stop me. (I thought it was gutsy, not stupid!) Without fear I put off my much-needed gallbladder surgery for close to two years - because I didn't want to be incapacitated if my daughter needed me at the "major medical center."</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">But I'm scared now. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">And hungry! There's gotta be an easier way to lose 32 pounds!</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better. Ciao and paka.</span><br />
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<i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i><br />
<br />irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com8tag:blogger.com,1999:blog-7385285973919124831.post-36833437382490351142013-10-04T23:19:00.001-04:002014-01-28T19:55:38.604-05:00Friday Tidbits:The Vietnam War & Where Have All the Good Doctors Gone?<div class="separator" style="clear: both; text-align: center;">
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What was so special about the middle to late '60's and early '70's? <br />
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It was a magical decade. We had the best music and we knew it, just an example. After all, who doesn't love "Puff the Magic Dragon," - still? My son and his wife sing the song to that baby who will arrive next year (Mandatory "Knock on Wood" and a "tphoo! tphoo! tphoo!") He remembers me singing it to the kids when they were growing up and then as they got a bit older, pretending <i>they </i>were Peter, Paul and Mary, one of the boys with a broom in hand as a microphone.<br />
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But there was a lot of ugliness back then as well. The Vietnam War was tearing this country apart. It ripped families apart when fathers who had fought so valiantly in World War ll were more than upset that their sons would not go to war to fight communism. It was an ugly era in too many ways: the Cold War, the Cuban missile crisis, the assassinations of President Kennedy, his brother Robert and then Martin Luther King.<br />
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So what good came out of that God-forsaken war where too many lives were lost?<br />
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It's an interesting observation, in my most humble opinion. Yeah, right. My "humble" opinion? More like "I can be wishy-washy about a lot of things but my brain tells me I am right on this one."<br />
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There was that ugly draft which every young man wanted to avoid and each dreaded turning 18. If you got a bad number on lottery day you had two ways of staying out of Vietnam: a) go to theological school or b) go to medical school.<br />
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Many wanted to get into medical school, theological school not so much. The probability of getting into an American medical school became nigh to impossible. We learned a lot of new names of countries and cities like Guadalajara and other such places where the rejects, the wannabes, went to medical school with questionable medical educations. 4.0 average didn't get you far in the States, nor even the holy MCATS. You had to be perfect and then a whole lot more.<br />
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Our brightest were not stupid. They knew that if they worked hard (impossible hours, up to 110 hours a week, now since made illegal) they would have a nice income, a secure life, the "American Dream." It wasn't an easy route to get that education and all the training. However, if you could manage it, it kept you out of the war and it set you for life. You were respected. People looked up to you and trusted you. Your patients loved you, for the most part. The doctor saw a patient who needed hospitalization and the patient went in. Doctors talked to their patients and listened to their patients. A 10-15 minute appointment was absolutely unfathomable. If a physician felt that his patient needed testing, it <i>WAS</i> done. If he felt that a patient needed medication, there was no snot-nosed insurance person with a high school education and no medical training whatsoever overruling a doctor's opinion, a doctor who'd had four years of university, another four years of medical school, then one year of internship to just become a doctor but many more years if specializing was where you wanted to go.<br />
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Times have changed, however. Unfortunately. Gone are the brightest and most talented going into medicine. And why go into medicine? Insurance companies overrule every opinion physicians have, they dictate to hospitals - and doctors are scrutinized for more things that go on than are imaginable. Who needs that hassle? There are so many easier ways to make a living.<br />
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Well, I'm totally fed up. I moved to our town 31 years ago and the town had excellent medical facilities, great doctors. Now it's all gone. The doctors of my era are all retiring early. The ones coming up are basically robots. They are chickens. They have no guts. They have no stomach, no principles. Yes, there are exceptions. But therein lies the tragedy: they are exceptions. Exceptions. Really? We want and expect only exceptions?<br />
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Last night I went to the ER for severe everything. How to organize my thoughts when I, who does <i>NOT </i>allow myself to cry about pain and my health, was screaming at the top of my lungs sobbing for two solid days, feeling like my guts were being ripped apart and the nausea was killing me, just the two loudest squeaky wheels. (This all so Cliff Notes stuff of what went on.) None of my meds were working. My daughter wanted me to go to the ER to get some help. I finally called an ambulance in the middle of the night (giving the neighbors yet<i> another </i>show) because I was afraid the neighbors would call the police from all the screaming, afraid there was a murder going on in our house.<br />
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This was worse than the birth of my first child, a 10-pound wonder where I had a 36-hour, contractions-every-2 minutes-apart labor, right from the start, back labor with mid-forceps delivery and losing half my blood volume in a fraction of a blink of an eye, causing 3rd degree lacerations and the doctor screaming orders, the delivery room in total chaos while my body was jerking off the bed, every one holding me down as the doctor tried to do a whole lot of sewing to a uterus that wouldn't contract. We picked our doctor carefully in New York, finding one who'd been educated in some of the world's greatest medical schools (Great Britain, Germany, Israel) and ended up needing every one of his talents to keep me alive.<br />
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So, why the hesitation in going to the ER? I've, generally speaking, had great medical care. I freely admit that I've basically had the champagne of medical treatment, not having to deal with too many robots. Well, everyone with the DD knows this hesitation to go to the ER, it's a no-brainer. Once those words, "Chronic fatigue" and "fibro" are uttered or seen on a chart (<i>IF</i> they even read the chart, a whole <i>OTHER</i> issue) that negates everything. You are nothing. <br />
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Last week I had two ER runs and returned home in worse shape than when I went in, another horrid story I've not gotten to. So I did not want to go at all now.<br />
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It took the "super special IV person" - a very wonderful soul - 45 minutes to find the vein she could get into. Such fine work I've never seen done to my poor veins. A truly amazing job. Then when she got half the blood she needed, it stopped coming out, a common problem with me. I had a CT scan of my abdomen this time (last week was a CT scan for the head due to my many falls). The CT scan technician was a dear. When she asked if I wanted a cool washcloth to my forehead I realized that I must be running a fever. Yes. I was indeed. It was 103 degrees - high for a normal person, but my temperature normally runs 95. The BP, which lying down should be, for me, 90/65-70 was now a whopping 151, another "tell" as to how I'm doing. But I'm being told it means nothing. Then why, pray tell, take the numbers in the first place?<br />
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And the CT scan of my abdomen? What could we deny here? What can we possibly conveniently overlook? I have pancreatitis. Period. It shows up. I have numbers <i>AND</i> images. But oh no. It's not a biggie, it's all imagined.<br />
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I was told it was just like a bit of a flu. I was not given any instructions other than a cruddy and badly copied explanation sheet, not discussed at all with me though throughout the sheets "they" kept saying, "discuss blah blah blah with your doctor." I was offered morphine for pain. Morphine does not work for me as all my charts from 1988 and on document. I asked for Demerol because it's the only medication that has worked in the past. No, can't have Demerol. Dilaudid? Offered and then suddenly they decided to retract that. No. Only morphine. I'd never had Dilaudid but at least I'd have a chance of it working. But why take the morphine if we know it won't work? It was the "old major medical center mentality" we'd experienced for two years with my daughter....again where pain was the issue and nothing was done about the pancreatitis whatsoever. Though lets be clear: my daughter's pancreatitis and mine are/were worlds apart, with her.... well, I just can't go there.<br />
<br />
The doctor did not tell me that I must eat as little as possible in the next four days - though the sheet did! - with, as my rheumy advised later, only a couple of teaspoons a few times a day of applesauce and no more. <br />
<br />
Coincidentally, I'd stopped eating six weeks ago because in the past year I've developed another weird symptom: pain upon eating (or even drinking water unless it's practically frozen), much like a body migraine. I've been told by five excellent doctors that they've heard of this phenomenon but that no one knows why this happens. So six weeks ago I stopped eating, choosing the not-eating pain over the eating pain - a good way to lose 30 pounds! I was, luckily, taking an antibiotic for a badly infected pinkie which looked so gross I'd be embarrassed to post it - and come on, I've posted some really embarrassing stuff here, doozies.<br />
<br />
In other words, it's a good thing I wasn't eating and that I was taking the antibiotic because those are the treatments needed. Yet no history was taken in the ER, no questions asked about what medications I had taken that day or even yesterday. Nothing, nothing, nothing. No urine test, no IV fluids for a very dehydrated me. Nothing, nothing, nothing. Chest pain not a factor at all. Blood in the (oh G-d, do I have to go here? You know...don't make me say <i>IT</i>!) <br />
<br />
And here I stop until the next post. There is still so much to tell of this fiasco. For the nausea medication I had to wait hours - but that's just a tiny morsel of the nightmare.<br />
<br />
But there is a moral to the rehashing of this story. Allow me to tell you this: try to stay away from those wimpy physicians who are too young to remember the Vietnam War and are doctors in name only. Just as anyone in the medical profession will tell you, try not to go to a hospital in July and August (because everyone is just starting), so too it is good advise to try to find the old doctors out there who were our brightest and who have guts. Whether they didn't go to Vietnam because of principles of an undeclared war or they wanted to stay away from battle, we, the patients, were lucky to have some awfully gifted doctors with many advances made by those talented men in those years. Now these gifted people go into technology or business. Who needs all that aggravation of being a doctor?<br />
<br />
I miss those day, those doctors, the compassion, the care and their knowledge. Peter, Paul and Mary should have added to "Where Have All the Flowers Gone," the phrase "Where Have All the Good Doctors Gone?" I hear it over and over and over again. Doctors making gross errors that cause deaths. OK, errors will always happen. When my daughter developed pancreatitis on her death bed keeping everyone jumping, we realized it was extremely bad luck with medication, and we didn't blame the doctor. We knew he had done his best. But he was one of a few exceptions we came across.<br />
<br />
I'm extremely proud of being an American. Embarrassingly happy to be an American. But what I've seen now in the last few years embarrasses me. It is embarrassing that our country has come to this.<br />
<br />
And lest we forget those young men, who <i>DID</i> go to Vietnam, thank you. As to those brave souls who didn't make it home, I think of you each day, hand to God. You were true heroes. For those of you who remember that music and that era here's a bit of music that may and should make <i><a href="http://www.youtube.com/watch?v=7btcIj3p4-I"><b>YOU</b></a></i> cry. Yes, where <i>HAVE</i> all the brave soldiers gone? But after the experience I've had these least few years with hospitals, I can't help saying, Where have our great doctors gone - the ones who are supposed to heal us? Where have they gone and when will anyone learn?<br />
<br />
And on that cheerful note, I say the usual: I hope every one is doing their very best - only better! Ciao and paka.<br />
<br />
<br />
NOTE: I want to thank all of my twitter family for the help in getting me through the ER nightmare. There was so much drama going on and not the good kind. Without the ability of having a health care advocate beside me, you kept me sane and your prayers helped. Things are really still bad but the kindness of my friends was comforting beyond words and I'm for once not embarrassed to say, as I type this, that I'm in tears because so much support was out there for me. Words will never describe, other than to simply say, thank you. And Linda, thanks my dearest friend of 43 years, for all the hours of conversation in the last few weeks/days and Sharon, my Villa sister whom I've never met, thank you for all your words, those nuns up there matching us up.....you know how much I love you two wonderful women. And Mariula, спасибо дорогая. And, of course, my wonderful daughter who wasn't able to be there today/yesterday, but is now outraged and going ballistic because she's been there with all this digestion thing, though her's was in another stratosphere, my pancreatitis small potatoes compared to what happened to her. <br />
<br />
<br />
<i><span style="color: #990000; font-family: Trebuchet MS, sans-serif;"><b>(Did you "enjoy" this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</b></span></i>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com9tag:blogger.com,1999:blog-7385285973919124831.post-91210063887059142892013-09-24T21:31:00.001-04:002013-09-24T22:53:47.544-04:00The Mary Tyler Moore Show<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz4ECglf2vxjrRefDhbn28rKKWMe5zo9bi4XOT5WAZIaLoPsyIYJb7t89jKK28d5D_XLJ6tuBdAvKFTCuK2W5ZSGA2naypj23CAI6jCVwmZzDvHZuthFgwAGOrFXX-A54ZhkNyKDYfSSk/s1600/IMG_2538.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">After</span></b></i></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">Before</span></b></i></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><i><b><span style="font-family: Trebuchet MS, sans-serif; font-size: small;">Before</span></b></i></td></tr>
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</div><div><span style="font-family: Trebuchet MS, sans-serif;">Now what in the world could Mary Tyler Moore (aka Mary Richards for those who remember that iconic show) have to do with anyone who suffers from CFIDS/ME/CFS and/or Fibromyalgia, not to mention another couple of dozens of "invisible" and debilitating illnesses? Well, bear with me and you'll find out - I hope!</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"></div><div><span style="font-family: Trebuchet MS, sans-serif;">As I wrote yesterday, I'm now living through the second scariest and most agonizing period of my entire life. Number 1 was, without a doubt, when we went through my daughter's ordeals for two years. She had more near-death experiences than anyone should. Now <i>I'm</i> living the 2nd worst time of my life. In case you've forgotten (and who could blame you with fibro-brain going on?) I'm living through the scariest time in my life, from the CFIDS/ME/CFS and Fibromyalgia and all the complications involved, but also in just about every aspect in my life that I can think of. As I mentioned before, in missing about five weeks of posting, y'all have missed out on a whole bunch of "good stuff." Of course that depends on how desperately you want to know what's been going on. (And I do so hope someone cares!)</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">It's amazing what people know about you and what they don't know. My daughter was over a few days ago, bringing over some liquid detergent. I'd run out of two and a half large bottles in about three days. Daughter was a bit surprised that I was able to do the laundry, especially so much. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Well.... blow me down! She, who knows me pretty well, never knew about this quirk of mine. There are two tells: one is pretty obvious. When things get bad my green eyes turn blue. When I get <i>REALLY </i>really angry, I am a cleaning fiend. Combine that with....</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">OK. Where's Mary Richards in all of this? We need to go back to 1970 and thereabouts.</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">In college we would sit in the corridor huddled around a tiny TV to watch this amazing show of the woman we all wanted to be. We wanted careers like Mary had, not the stuff that women were forced to do. To put you into the era, my entering class was the second one to officially admit females. The school had to "refurbish" a second dorm for us, evidently very quickly, running out of precious time. How do I know this? Well, when we arrived, all fresh, bright and bushy-tailed, we discovered that our huge bathroom had urinals in them (now <i>THAT</i> was interesting since I'd never seen one before!) and gang showers with no shower curtains. (Try being big-breasted! Those endowed tried to take 3AM showers for a smaller audience.) </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">So, I hope that sets up the picture. Mary Richard was beautiful. She had the perfect clothes, she had the perfect job, she had it all. We all desperately wanted to grow up and be her.</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">During one episode Mary (the one in the TV, not any old Mary hunched on the floor of the hall) was upset about something, and it was a <i>BIG</i> upset. Either Rhoda or Phyllis made a comment that when Mary gets upset she starts cleaning. I loved the line and really never gave it another thought. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">So, back to the new age and the new decade. My daughter comes over to the house and sees that there are a lot of things going on, but especially laundry. At first I didn't understand why she was so surprised and didn't even give it a second thought. But then my daughter said a few things that amounted to "I'm so glad you're taking this all so well and that you look good," yada, yada, yada. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">What? Are you kidding me? In what world am I taking this well? In what way could all this manic cleaning be a good thing? </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">What no one's ever <i>truly </i>realized is that if I'm in a lot of pain I wash floors, cook, bake. They were "sort of" used to that premise though not really, if you know what I mean. I've been doing this sort of diversionary thing since I was a little kid. In fact, my mom would say, "children do not get headaches, they cause them." What's a kid to do? So, I found coping mechanisms along the way. With child #2 I went blind in one eye for a couple of days and a neuro-ophthalmologist (a rarity even in NYC in those days) told me it was a classic "migraine equivalent." For the debate on that, this <a href="http://laughingfrommysickbed.blogspot.com/2012/09/not-now-dear-i-really-do-have-headache.html">link re migraines</a> will tell you about that little adventure. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">The neuro-ophthalmologist was amazed at my "diversion" tactics. I can handle a<i> LOT </i>of pain. Not bragging, just the truth. In fact, when I see a new doctor, it's hubs or one of the kids who "squeal" that I can withstand huge amounts of pain. I feel like everyone says that and so I don't go there and am embarrassed when said family butts in with this bit of info. </span></div><div><i><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></i></div><div><span style="font-family: Trebuchet MS, sans-serif;"><i>S</i>o, pain I can't tolerate<i>: SPARKLING</i> floors that a baby could eat off of. Really. (In fact we need a new kitchen floor and that isn't driving me nuts<i> ONLY</i> because I am at the end of my ropes in this awful stuff that's going on around me!) </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">So my poor daughter sees that I'm doing laundry - I love doing laundry and rarely get to do it any longer - and thinks, "mom is doing so well!" Oh, you little amateur, my baby. You know your mom not quite as well as you thought. (Can I a put a "huh!" in there without sounding too petty?) </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">You see, when I go ballistic, and I mean when it's a rage, sadness, fear, feeling that your own family doesn't understand, unbearable pain that's at the magnitude of a definite 10 but you want to say it's a 20, when I'm completely off the wall in pain with nothing helping me at all, I start cleaning walls, mirrors, play jack-in-the-box (popping in and out of bed, falling half the time), that means that you really do <i>NOT</i> want to mess with me. I'm using all my diversionary tactics.</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">I've always had a "thing" about cleanliness. Up until I became a baby factory, I used to take three showers a day: in the morning to wake up and get all that filthy, disgusting dirt that you just know I picked up from the sheets that I just slept on (which were changed every other day), a second shower once home from outside (can't blame me for that!) and a final (number three in case you've lost count), to make sure I'm going to bed clean because it felt so good. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">I vacuumed a not small house every single day, even when I was overdue for baby deliveries, while my mom would practically have a heart attack that I was doing such disgusting things. She also thought it completely immodest and perhaps immoral to be out in public once I was about 6 months pregnant. Yes, it <i>WAS</i> a different world!</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">So, I had to explain to my daughter how this works. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Thus far, every pillow in the house has been washed. That's four beds with at least 4-6 pillows on each bed but for the twin bed with only three pillows but lets not forget the "extra pillows" for when you need different pillow(s) for who knows <i>WHAT </i>reason! The down ones need to go to the cleaners but I need someone to take them. I have washed every single pillowcase, pillow cover, sheet, duvet cover. I've washed almost every T-shirt, leggings, nightgown, pajamas and any other article of clothing you can imagine but for the ones that need the cleaners. </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">I'm now into the many, many tablecloths and cloth napkins. (I'm crazy in setting a great-looking table....we all have our vices, admit it! Come on... it only hurts the first time!)</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">I've emptied out closets. I'm organizing jewelry. I'm organizing makeup (how embarrassing...lipstick story is for another day!!!). </span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">I'm throwing things out right and left. Of course, only after enough suffering on making that decision. It doesn't get thrown out if there isn't enough <i>ANGST.</i> I do have an excuse for that, however: I am deficient in the "throw things out" gene. I always throw things out that I end up needing. I'm still grieving about a purse I threw out twenty five years ago! Yes, yes, I know it's time to get over it, but..... try to see it from my side! <i>PLEASE</i>! (LOL!)</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Today daughter stopped by to tell me that she's too tired for Dancing with the Stars and could we hold off another day (tomorrow) to watch it?</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">And she<i> STILL</i> doesn't understand the premise here. I am royally upset, ticked, afraid, sick and so many, many other things that only a bucketful of miracles and prayers can turn things around. And yes, my friends here, on Facebook and on Twitter... I am so very much indebted to you. Never let anyone tell you that Twitter is a waste of time. Not only have I made some really wonderful friends here but the support has been incredible (to be gone into at a later date.)</span></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">So, as a tease I will write down what I plan to cover, if I can get the "energy" for it:</span></div><div><ul><li><span style="font-family: Trebuchet MS, sans-serif;">Yesterday I couldn't take it with the gardening and will report on that front for all the spoonies out there who love gardening but have had this pleasure taken away from them due to stupid illnesses.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">I plan to write about the 'diet" (way of eating) as requested by a few people on twitter. I've been putting it off because I barely know where to start but it's the right time for it now... if only I can get my head around it.</span></li>
<li><span style="font-family: 'Trebuchet MS', sans-serif;">There were the insane ER visits a couple of weeks ago that have got to be heard because this is hitting not just in my geographical area but is taking place all over the US and it's frightening. </span></li>
</ul></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span> <div><span style="font-family: Trebuchet MS, sans-serif;">And so daughter understands me a bit better now. You can't blame her for not knowing this. How often does this cleaning diversion take place to the laundry and closet level? If we're lucky, it's about once every few years. But you get to the point that all the pains going on in your life get to be too much and nothing, other than prayer, helps to get over things as well because a clean, decluttered, organized home ... there are just very few things that make you feel truly at peace. It's such a small thing, you would think. But it's incredibly healing. For those of us sick with the DD, only when you get enough of an adrenaline rush can anything like this be accomplished - at least for me.</span></div></div><div><span style="font-family: Trebuchet MS, sans-serif;"><br />
</span></div><div><span style="font-family: Trebuchet MS, sans-serif;">Now someone take me out to the back of a barn somewhere and just shoot me! Talk about pain and paying back for all the stuff I'm doing. Sometimes you just have a no-win situation. Rest and the pain is intolerable. Do something to distract from the pain and you pay in spades. What's a person to do? Work on until you drop is my most recent motto because it won't last and at least I'll get something out of it in the end.... or so I hope! </span></div><div><div><br />
</div></div><span style="font-family: Trebuchet MS, sans-serif;">As always, I hope everyone's doing their very best - only better! Ciao and paka.</span><br />
<div><br />
</div><div><i><b><br />
<span style="color: #990000;">(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)</span></b></i></div><div><div><br />
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</div></div>irene speakshttp://www.blogger.com/profile/15306297235592610766noreply@blogger.com7