About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, January 31, 2014

Month in Review...

St. Louis' Record Blizzard of 1982, snowed in for a week!

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, so eventful that I've barely blogged. (Eye roll!)

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!  

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. 

My rheumy had warned me that I probably wasn't ready to get that colonoscopy I talked about in a previous post about "Cookbook Medicine."  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 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.

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.

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 Dallas Buyer's Club 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.  

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! 

I did read a book this month that I really enjoyed and wanted to pass along the title. It's Fanny Flagg's The All-Girl Filling Station's Last Reunion: A Novel.  I think it's her best book since Fried Green Tomatoes.  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.  

And I guess that's a wrap for January.

As always, I hope everyone is feeling their best - only better.  Ciao and paka! 

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Friday Tidbits: The Real Reason Rheumys May Not Want to Treat You

This is part two of the discussion in my last post, "The Role of the Rheumy Treating CFS/ME, Fibro and Other Sundries."  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.

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.  

Now before anyone starts "yelling" at me, please hear what I'm saying.  (Yes, I can hear the roar!)  

I'm not in any way saying that lupus or RA are less dangerous, but that they are less frustrating for the doctor to treat.  Lupus and RA are extremely 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. 

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 THE 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! ;)

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. 

So to get to the matter at hand as to why a rheumatologist wouldn't want to treat fibromyalgia?

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.

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.  

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 HATE those patients!"

Taken aback, my rheumy asked, "How can you hate your patients?"  

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?"

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!

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?"

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!

He then said, he would NOT hate "those" patients under the circumstances.  

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.

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.

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.

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.  

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.  

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.

What to do?  I think we all know, but I'll repeat it in order to complete my thoughts:

  • 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. 
  • Be as specific as possible and try not to go on tangents when discussing major issues that are of major concern.  (That's rich: me advising you to not go on tangents!)
  • 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.  
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.  

As for poor old ME/CFS?  That's for another posting.  

As always, I hope everyone's doing their very best - only better!  Ciao and paka.

(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!)

Thursday, January 30, 2014

The Role of the Rheumy in Treating CFS/ME, Fibro & Other Sundries

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!

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.  

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. 

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 all that is, indeed, "wrong" with me. However, I'm giving it the old college try.

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. 

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 are 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.  
So, what does my rheumy treat me for, in conjunction with my GP?  

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:
  • Fibromyalgia 
  • Myofascial Pain Syndrome (MPS) 
  • Orthostatic Intolerance
  • Migraine Headaches
  • Body Migraines 
  • Severe Insomnia (called "malignant insomnia" by one neuro though "malignant insomnia" has a different definition) 
  • Pain
  • Myoclonus 
  • Low resistance to infection 
  • Neuropathy 
  • Restless Leg Syndrome 
  • Tinnitus 
  • Irritable Bowel Syndrome (though in the last few months you can read how severe it became, leading to hospitalization and calling in a GI)
  • DHEA deficiency
  • Nutritional IVs (I have trouble absorbing many vitamins and nutrients)
  • Chelation (I'm a walking - crawling? - toxic waste dump with much heavy metal poisoning.)
For my migraines and ridiculously severe insomnia, I have 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.  

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 tad bit closer.  I really need a fantastic neurologist because the problems are just becoming too complicated. 

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: 
  • They don't understand ME/CFS and fibromyalgia enough to mesh their specialty with the ME/CFS & fibro.
  • Too many simply do not believe that ME/CFS and fibro are real.  
  • We are such a mystery that doctors have a hard time seeing and understanding the whole picture.
  • We are a headache to most doctors.  
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.)

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...

In the meantime, I hope this helps some of my readers.  

I also hope everyone is feeling their best, only better!  Ciao and paka! 

(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!)

Monday, January 27, 2014

Babushka! Baby Update...

For those who haven't heard: I became a first-time grandmother about twenty four hours ago.  It's a club I've long wanted to join and now I'm in.  Yippee!

My BFF - who recently also became a grandmother herself, of course! - told me it would be like nothing ever felt before and she is so right.  It's fantastic when BFF's 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!)

Thanks, also, to all who have kept up with this evolving story, your comments and encouragement here, on Twitter, and on Facebook.  Most especially, I thank you for all your prayers.  We had some mighty big scares and I'm convinced all the prayers helped.  

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.  

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. 

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.  As you can imagine, we're "over the moon."  What bliss! 

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. 

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!

Stay safe, my friends, especially those in the US, most 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: 
"[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."
Ahhh yes!  The new dad was three weeks late and had to be induced.  He arriving on a balmy (!) 112 degree day and I suppose he fell in love with really 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!   

As always, I hope everyone is doing their very best, only better.  Ciao and paka!   

Monday, January 13, 2014

"Cookbook Medicine": Really?

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.

First, the news which you, my friends, are waiting for: I'm clean!  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.

I do have two recommendations, however, for anyone who needs a colonoscopy: 

  • Watch Dr. Oz get his colonoscopy (part 1 and part 2) 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.  And then realize Dr. Oz is a man not used to being sick.  He complains of bloating, etc?  Please.  Easy peasy!  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.
  • Prior to the procedure, read Colonoscopy for Dummiesavailable 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!)

The few days before I went in, I was in pretty bad shape, ME/CFS and fibromyalgia-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 colonoscopy, 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.

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.

However, other parts I WILL 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.

The "fun part" I wish to address today came in the recovery room.  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.

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.  

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.

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.

When I said that I needed some pain medication - the BP was now in the range that NO 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.

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.

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.  

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 asked us if we objected to said ponytail.  

This doctor (Dr. "Whiteman") also 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 lie.  He, with a bit of shame on his face, admitted that the hospital DID have it but that he couldn't prescribe it.  I said, "No, you CAN 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 HUGE 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! 

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.

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 ANY hospital in the US, has no accountability for the care of patients.  That is the doctor's role.

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?"

I asked the doctor: 

  • Since when have you allowed the insurance companies to dictate your medical treatment?
  • Since when have you allowed the federal government to dictate the practice of medicine?
  • Since when did you allow the corporation that owns the hospital to overrule your medical judgement?
  • 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?

How sad!  How defeated!  One can say, "is this the future of medicine"?  No, we were told in no uncertain terms that this IS medicine today.  Right out of the robot's mouth. 

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, "What is my BP Trying to Tell Me?" as I looked at numbers I've never seen before.  But that last part about the BP is for a future post.

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!

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Waiting-for-Baby Update

Praying for a healthy baby "Junior."  I cannot believe this baby is so worried about his new little one now...

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.

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, everyone 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.

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!)

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.  

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.

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 that notion. As IF 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.   

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.

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.  

Hoping everyone is feeling and doing their very best, only better!  Ciao and paka!  Thank you! 


Sunday, January 5, 2014

A Practical Suggestion For Vitamin Deficiencies

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.

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?

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 B-12 levels.

However, there are many 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!)

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 THREE 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.

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 severely afflicted.

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.

Of course, all the "normal" disclaimers apply.  One should always check with one's doctor!  Furthermore, this is a very 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!

As always, I hope everyone's doing their very best - only better!  Ciao and paka.

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Saturday, January 4, 2014

Update: Starting the New Year with a Prayer!

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!

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.

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.

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.

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.

As always, I hope everyone is doing their best, only better!   Ciao and paka.

Saturday, December 28, 2013

Stomach Acid & Vitamin B-12 Deficiency

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?

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.

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.

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.

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 IS a place for him on TV after all - as millions of Americans have shown us.  But back to the subject at hand.

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.

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):

  • Anemia (B-12 deficiency can cause pernicious anemia, a megaloblastic anemia) 
  • Poor memory (first sign in B-12 deficiency)
  • Depression (the poor woman on the show didn't seem to agree with the depression!)
  • No appetite (forgetting to eat)
  • Tired (walking bent over, "literally down to the ground" as Dr. Oz says)
  • Weak (feeling listless)
  • Foggy (the mental "prowess isn't there")

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.

I had our "vinigret," the traditional beet and potato salad on Christmas Eve and Christmas Day, as described in my Christmas post.  My urine was pink and I've started back on my daily B-12 shots.

Tada!  So, here IS 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 tolerate a small beet) and see what happens!

Before I end, I did want to mention that with me, because I've been sick for so long and because I'm AM 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.

Can you guess what one of my resolutions will be for the New Year?

Here is Dr. Oz's Family Salad to getting you started on beets if you so wish. I happen to think it's a much maligned veggie in the States! 


  • Beets
  • Olive oil
  • Balsamic vinegar
  • Garlic
  • Salt
  • Pepper
  • Gorgonzola cheese
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.

Note: 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!

And if I get my act together I'll post my "Vinigret" recipe.  If you like beets you'll find this especially delicious.

As always, I hope everyone is feeling their very best, only better.  Ciao and paka!

*I realized that there were at least two more ER runs which I described in this blog but totally forgot!  Where's my scorecard?

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Friday, December 27, 2013

Friday Tidbits: "You're a Migraineur!"

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.

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 ever 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 smugly thought there were no other surprises in store for me. Sigh.  Sometimes I marvel at my own stupidity naivete'.

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.)

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.

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!"

Stop the world.  What?  I'm what?  No, I'm not a "migraineur."  Yes, I do get migraines in my head - and I get severe body migraines as well.  Yes, to keep the migraines under control, I try to watch my diet 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.

I'm trying to figure out what it is 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 (link), 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 mind. Furthermore, I think I can do this PRECISELY because I started getting migraines in early childhood, due to that "window of opportunity" when learning survival skills is constant and mandatory, as dictated by Mother Nature.

Back when I was preggers with my second child, I suddenly went blind in one eye.  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 all 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.

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!)  

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.

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 this med from my go-to's, since it didn't work as well as it should have. 

On the other hand, it did eliminate the body migraine, the nausea & most of dizziness as well as the colors I had floating around words on a page or what I saw when closing my eyes. However, everything is blurred now and my head feels as if a truck hit it, with eyes that feel as I'd been crying for days. And can someone take the vise off my head? On the other hand (again), this WAS a new sort of headache, with little pain in the scope of things, so perhaps this med is one I should try if/when I get a more typical migraine.

Good Grief! If I'm putting all this thought and energy into my migraines: and discussing them in such length; noting the newest kind as well as describing various experiences in my past; working so actively to prevent them; having had much testing in the forms of CT scans, MRIs, spect scan, x-rays and "things" I've thankfully forgotten, in addition to not thinking very clearly as I try to ignore this mess going on in my head as I write - well take a deep breath - maybe that DOES make me a migraineur.

As always, I hope everyone's doing their very best - only better!  Happy and safe weekend, everyone!  Ciao and paka.

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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.

Monday, December 23, 2013

Merry Christmas!

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 never seems to end.

A funny story for you, my dear readers. (Sorry!  That sounds so forced!)   

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!

My mom couldn't understand why I'd come home crying and I must truly have been sobbing.  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. 

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.  

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.)

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 should 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!  

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.  

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! 

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.  

And I wonder why I got CFS and fibromyalgia?  Hmmmm... I might want to think about that! ;)

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! 

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Friday, December 20, 2013

Friday Tidbits: What Is My BP Trying To Tell ME?

Sometimes moms are guilty as well when it comes to listening.  This was no happy camper! 

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 which I've had to cancel at the last minute, all because I was too ill from my CFIDS/ME/CFS and fibromyalgia. This is the first time I've been able to see my GI in his actual office. (Baby steps!)

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 off a bra and not getting one closed.  I may have to rethink that remark! ;)

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 pitocin problem.) 

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.)

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 DID 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 here and here and a whole lot of other places in this blog, of late.)

But yesterday was a bit of a wake-up call.  I've finally figured out one of the things that has me concerned.

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!  

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 - my "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."

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 really sick, my normal BP was always 120/80, a very good BP level.  

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.

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 fear being lazy. (Hence so many home accidents, falls, etc. And scarier is that I do have a moment of being unconscious.)

Furthermore, with my BP in the 120's, I know that I really have to try 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 don't stay in bed here are just a few of the weird things that have happened to me.  Believe me, these are just a few of the examples: 

  • 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 before 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.
  • 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!
  • 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.
  • 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.  
So BP has become a huge motivator in getting into bed and "resting."  

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 nuclear 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.

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.  

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.

Boy, were we wrong.  We'd thought it would be the high 20's.

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. 

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. 

What the heck is/are the problem(s)?  We're still on the "Hunt For Red October," where I was over a year ago. 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?

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. 

In the meantime, I hope everyone's doing their very best - only better!  Happy Holidays!  Ciao and paka.

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