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, December 14, 2012

Friday Tidbits: Medicine 21st Century Style

The Offensive

It's been an awfully odd week. I finally felt well enough to go and see my GP.  It was a long appointment as we made plans as to how to attack a "new" problem I'm having.  This is the latest development in what I call the "something new is majorly wrong with me" problem that I've been concerned about for about two years now. We've been distracted from this hunt because of a few red herrings that got in the way, among them the compartment syndrome surgery, pneumonia, gallbladder surgery and abnormal mammogram.  We talked and planned as if it were all a military operation, deciding which specialists I need to see.  Before, it's been, "see this specialist to put out this fire, another one to put out another fire."  However, we all now realize that we need to actively go on the offensive.  Putting out fires is no longer acceptable.  Because of the military feel of strategic planning, as well as well as the red herrings, my mind thinks of this as "The Hunt For Red October."  It is just so much easier to give it a code name because "the figuring out what new majorly new huge problem is" is just a wee bit overly-worded.

Part of me is happy that we appear to now start planning by going on the offensive by making appointments. On the other hand, the realistic part of me is a bit anxious because I know that no matter how much I plan it all out, no matter how many appointments are made with doctors who have carved out times in their schedules to accommodate me (calling in favors) I will end up having to cancel some appointments - and that is not just embarrassing, but it also makes me feel like a second-class citizen.  For example, I'd made numerous appointments with my gastroenterologist and over the last two years I've had to cancel each of about five appointments at the last minute. I become so sick that were the house on fire, I wouldn't be able to allow anyone to haul me out of it.  The pain is just so bad that I can't allow anyone to be in the same room with me, much less touch me.   How does one ever explain this sort of pain, exhaustion, brain depletion, nerve sensitivity, and so forth that is the legacy of CFIDS/ME/CFS and/or fibromyalgia?

So, this is one huge problem. As optimistic as I am, the rational, practical voice in me says, "this I have GOT to see!" as in "how in the world am I going to be able to see all these doctors?" I need to see about five or six specialists at this point, PLUS get my breast biopsy.  Huh?  Really?  Seriously?  Good grief, I'm still recovering from the gallbladder surgery.

In the end, my GP, hubs and I did cover some of the realities of being ill in the 21st century.

  • We lamented the fact that one can no longer be admitted to the hospital and have all the consultants come to see you. We remember the days when all tests could be run during your hospitalization, all in one big fell swoop.  Back in the day, the consultants would run into each other in the hospital cafeteria, the X-ray room, or corridors if they couldn't manage a brainstorming session. What now takes months and months to accomplish could take a week or less if it were done with a hospitalization.
  • We lamented the fact that acute health problems like saving the life of a shooting victim or a liver transplant is done so well, but chronic medical problems are woefully badly done.  Everything is so wrong!  I had great care when I had my compartment surgery but because of my CFIDS/ME/CFS, fibromyalgia, insomnia, migraines, I could not make it to the hand therapy I needed, once released from the hospital.  The plastic surgeon could not understand that if he wanted me to have several months worth of tri-weekly sessions, they needed to be done at my home.  I couldn't begin to explain to him that even if someone came to the house I might not be able to handle talking to a hand therapist, much less have him touch me!   Forget the fact that all my organs had fluid around them (anasarka) and the urine in my bag was brown because the tissue from all my organs were breaking down (rhabdomyolysis).  Forget that I needed two blood transfusions to stay alive.  Forget that I had renal failure and pancreatitis. They STILL wanted me in the office and felt I was being difficult and non-compliant in regards to hand therapy.  (Note: I was released from the hospital too early and THAT'S why I ended up with the almost fatal conditions, rushed to another hospital less than 24 hours after coming home... in what world is THAT cost-effective?)
Yet when we said we'd pay privately for any hand therapy at home, the surgeon's office said that at-home therapy was "not in accordance with our business plans."  (Oh boy! Hubs still sees red every time he thinks about the hypocrisy and rigid thinking.)  Twelves months on, I have severe nerve damage and the inflammation in my hand is often not helped by anti-inflammatories. Oh those spoiled prima donna plastic surgeons.  You didn't see Dr. Hunk General Surgeon acting this way with my gallbladder.

  • And finally: we think we have a large chunk of the falling problem solved.  Perhaps you recall that I'd spent quite a bit of time passing out and crawling about, not being able to walk even the six feet between the bathroom and my bed without hubby's help.  It turns out that the muscle relaxer I need was changed to the generic and THAT was a great deal of the problem.  The scary part was also how LONG it took to clear the generic muscle relaxer out of my system.  I'm back to my name brand muscle relaxer and after six weeks, the falls are almost gone.   I do have trouble walking around but much of that is due to the gallbladder surgery and whatever this new "Hunt for Red October" is about.
The day after seeing my GP was more difficult than I've had to undergo in ages.  I see that after going to see my GP a couple of years ago and describing that I'd developed a new pain, he thought that my pain was just like any other.  Because of the stress of the visit (and the side visit to the mall for new glasses) I ended up in the ER with the surprise diagnosis of gallstones less than 48 hours later.  After seeing my surgeon on election day, plus taking the time to vote and run up to TJMaxx, I ended up so sick that I was in the ER just two days later.  After this latest visit to my GP, within 24 hours I ended up calling hubs at work and having a melt-down because the pain was so bad, but I couldn't endure even the thought of another ER visit, knowing how I would be treated for an "invisible illness." 

So, I want to know, how, exactly, will I survive all these visits to specialists without being killed in the long run?  I wouldn't think that under the circumstances, a hospitalization would be stretching it.  But alas, the hospitalization for a good workup in order to get everyone on the same page and to establish what is going on has gone the way of the doctor's house call.  I think a large part of the population out there with "invisible" illnesses knows exactly what I mean. Yes?  Comments welcome, as always.

And that's it for the week.  I hope everyone has a truly great weekend, feeling their very best, only better. Ciao and paka! 


  1. Oh, Irene, you've got quite a challenge ahead of you! Good luck and God bless.
    Regarding doctors and hospitals, my mother will tell you neither are as good "as they used to be." She is continuously lamenting that you can't trust doctors or hospitals any more. I remember she was in the hospital about 25 years ago for almost a month! Most of that time, she was just having a good old time. She loved the doctors, the nurses, the food! They really couldn't figure out what was wrong with her (she had a vague stomach pain) and finally took out her appendix. She was sorry to have to leave!
    On the other hand, she went in the hospital last April with severe pneumonia. She really almost died. Her experience this time around was horrendous. She must have had 12 different "doctors" as this is a teaching hospital. One doctor said she might have TB so they put in isolation with an extremely noisy air filter machine for a week. My sister and I kept turning down the speed on the dang thing. Twice, the nursing assistants lied to me about her treatment and she went two days without a wrist ID (accidentally cut off by them and I told numerous people about it).
    Well, I complained to the hospital administrator (whose office was in a completely different part of the complex well away from the actual hospital) but of course nothing came of it.
    Now she says if she gets sick, she does NOT want to go to the hospital. I have to agree. It's just crazy. Seems these days the hospital can be dangerous.
    This is a long post - sorry I've gone on.
    Keep up the fight, girl!
    Hope you have a good Christmas.

    1. It's truly sad how downhill medicine and these hospitals have gone. The rooms get fancier but the care gets worse, factory and business style. It's an ordeal to be in one. You're on pins and needles the whole time you're there and then really do need someone with you as a health advocate because of so mistakes going on, gigantic ones at that. It's all business today, unfortunately. Ugh! I could write a book on the state of hospitals, staff, training (or lack of it) and so on. And I really don't like the younger generation of doctors because our country's finest are no longer going into medicine, but into fields that are better compensated and garner more respect. We're getting mediocre doctors with this new generation. Saw it at "the major medical center" and it scared the crud out of me! You won't see me going there unless I have an acute freak problem. For chronic illnesses, stay away as much as possible.
      This is most certainly a hot button issue!
      I hope you have a great Christmas, Martha! xx