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.

Saturday, November 30, 2013

Checking In & Updates


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 KNOW 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!)

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.

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 this link for more on what great things happened that day!)

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:

  • Yes, ladies and gents, you may have realized why I'd gone MIA again.  It was yet another hospitalization!  
    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!
  • MY new theories about what's going on.  Well, perhaps not what is going on, but a possibility of why it's going on....
  • 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, if I should eat and so forth. So, recipes and ideas, might be coming down the pike.
  • 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.  
  • What have I been reading?  Not much, mind you, but I'm enjoying what I've discovered.
  • 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 egg each other on support each other with this.
  • 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!)
  • Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)
  • 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!)

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." 

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 THAT always puts me in the best of moods! 

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!)

Wednesday, November 20, 2013

Shallow Me?

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. 

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.

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.

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.

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.

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.  

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.

Now I need to explain something: just how much I loathe 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 each. Now with the hypothyroidism, I have less than even my usual.  I've seriously considered just going bald, getting it just shaved.

OK...you get the idea...I think.

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?!

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.

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.  

Was she insane?  Worse, did she think WE were insane and 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.  

You must read my post (please!) 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 ME.  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.  

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.

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.

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.

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.

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....

I can't win, can I?

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.

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 am my mother's daughter.

And on that note, I say my usual.  I hope everyone is feeling 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!)

Tuesday, November 19, 2013

Explanations & Understatements

Food, Glorious Food! 

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*

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! 

OK... A scorecard and Cliff Notes rehash (which are discussed in more detail here, here and here):
  • 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. (here)
  • 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.
  • Things had become so complicated by ER run #4 that diagnoses were being changed almost hour by hour.
And oh how dangerous things became!

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.)

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.

To say what I went through was painful is a gross understatement.  Luckily, once I was admitted, the hospital staff on the floor was fantastic.  I was given my pain and nausea meds on time, for example, a HUGE plus. To say that I literally felt as if I was in labor for the first nine days is yet another understatement.

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 (link).  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, the chest pain and a host of other problems, jumping off the balcony was starting to look like a pretty good thing to do! (Joke?)

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!)

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! ;)

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?

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.

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 IBS (Irritable Bowel Syndrome) and/or IBD (Inflammatory Bowel Disease).

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 MY 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.  

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!

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 THAT pickle.  Thank you all, so very, very much!

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 REALLY 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....

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. 

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.

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 THIS 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.

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 WAS 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!)

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. 

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?

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.

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.

That was worth its weight in gold.

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 VERY complicated lady!" hubs started laughing almost hysterically (understatement)  ... certainly hard enough to almost fall off his chair onto the floor.

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.

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. 

(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!)