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.

Tuesday, November 6, 2012

Progress Report Surprises

Well, today turned out to be a bit of a surprise.  Just as I think I know more or less the things that are "majorly" wrong with my body, the son-of-a gun (my body, that is) throws a curveball at me.  Oh CFIDS/ME/CFS and fibro, you evil, evil rascals  entities.  You betrayers of myself.

I saw my surgeon this morning - you who read my blog regularly MUST remember Dr. Hunk!  Oh, he's just a wonderful gentleman, from a different generation when people had beautiful manners but were ever so strong in a silent dignified way.  But I'm not going to extol his virtues today - I'll have to leave that for another time.  Sigh!

Instead I received more clues as to what's going on with me and I think that in the process I may have shocked the poor man a bit.  Three weeks ago, we didn't have much time, in the scheme of things, to talk about much but the upcoming and then resulting emergency surgery.  Today I found out that he was quite impressed with the fact that I had to have been "in a whole lot of pain" from the chronically-infected gallbladder and one of the stones which was a "whopping" 0.8 cm.  

He'd thought that I was nauseated and constantly throwing up before the surgery (I told him our family's weird that way: we don't do nausea nor barfing) and he said that I would be feeling sooo much better very soon because of the surgery, once the healing sets in "big time."  He gave me another blow by blow of how long it takes your body to recover, how much recovery is done by x amount of weeks, months, etc.

I told him that I was "unusual" in that after surgeries, I've always felt my best, the theory being that my immune system had something to fight, other than my own body.  In other words, my immune system was way too busy fixing me up and boy oh boy, it was nice to get a break, relatively speaking, from too much pain.  Oh, I had pain, but not like I normally have it and I've hardly had to take any pain medication at all as my body heals.  Very weird.  Shows how you DO NOT GET ADDICTED TO OPIATES IF YOU ARE UNDER THE CARE OF A DOCTOR WHO KNOWS WHAT HE IS DOING AND IF YOU'RE ONLY TAKING THOSE OPIATES WHEN YOU ABSOLUTELY NEED THEM!  

But as the appointment went on, I think he started to realize, finally, that the infected gallbladder was the least of my problems.  I told him I had no idea that the gallbladder had been an "outstanding" problem and only felt nausea when seeing too much fruit and didn't have enough meat protein.  Furthermore, the fact that I'd had pneumonia since July and hadn't known it had definitely shocked me - as it ended up shocking him that I'd not realized it too.  He then discovered that I never really had much pain in the gallbladder area but three times, mostly because I'm always going through bigger pains in other areas.  When he saw all the medications I was on, he started getting a better idea of the stress my body is under always, as in chronically, relentlessly, and without end.  Unfortunately. (Though fortunately, in that he understood what was going on, or getting a small picture of it, having an open mind, not rigid in thinking like too many other doctors can be.)

He also got a kick, in a perverse way, from finding out that the pain from the surgery woke me up, not a nurse, and that instead of expecting pain medication to help me with the post-surgical pain, I wanted to walk around - in the recovery room!  When I asked the nurse for permission, she was quite taken aback and couldn't believe I wanted to walk.  I simply thought they wouldn't give me any medication for the pain - having been through the machinations of the "major medical center" and its attitude towards pain with my daughter and the barbaric and lackadaisical attitudes towards pain relief.  He looked a bit put out by the perhaps "inflated" reputation of the "major medical center."  Actually, I saw quite a bit of that at the hospital during my stay and was quite happy to see that the high rating of the "major medical center" may not be as kosher as some would have us believe.

Oh my, YES!  They saved my daughter's life and on more than a couple of occasions. I'll forever be beyond grateful to them for that, beyond any words I could ever express.  Her surgeon was BEYOND superb and I can't praise HIM highly enough, but that is where it ends because they also caused her so much unnecessary pain - off-the-chart pain which added to the stress on her already weakened body.  They are great for a few things which very few places in the world can do, but in my humble opinion, they are really below par for the non-sexy issues which don't help them with their fundraising.  I seem to be under the mistaken impression that they should be superb and better in ALL their departments, but then I guess I'm just too picky!

I also want to add that "major medical centers" in general are definitely overrated.  I saw a commercial on TV recently and it said something about our community hospital being 12th in the country - yes, nation-wide!!! - for coronary efficiency, skill and care in ER centers.  Impressive, but I've always known that our town has superb medical care.  On the other hand, it's great to hear that we're being recognized! 

So, back to Dr. Hunk  my surgeon: I think he now has a new respect for those of "us" with CFIDS/ME/CFS and fibro!  Today he saw a woman in front of him who had been through h*ll and was still able to handle it as if it was a minor irritation.  This is the sort of thing that I want to convey to the world.  

But the body betrayal!  My body never ceases to amaze me, truly.  It turns out we have yet another surprise.  My body, according to the pathology report, is still in renal failure, not having recovered from the near-death experience of last year - a year ago this month - when I had two surgeries for compartment syndrome and all my organs started shutting down and worse.  Evidently it's not enough renal failure for dialysis, but still enough for it to be a serious problem and consideration.  Me: what else is new?  I'm losing body parts right and left, why should this be different?  But I suppose that when I see my GP, I'll need to have a talk with him about this new "discovery," along with all the other surprises we've discovered since I last saw him about six weeks ago.

And that's my progress report.  It feels rather self-indulgent going into all this detail.  On the other hand, my head is spinning with all of this news.  I need to figure out what everything means.  I STILL forget to take my thyroid medication until I start experiencing various symptoms returning.  My body is always surprising me: one day it can be my peripheral neuropathy that reminds me that I forgot to take my medication that morning, the next day it may be when my voice starts to go very hoarse and I sound as if I'm croaking.  Perhaps I should start a New Year's Resolution list now and put taking my thyroid medication on time each morning as number one on the list.   On the other hand, what about all the other number ones that need to be on the list?  

Man oh man.  How many more surprises can my body bear, I have to wonder?

I did, however, do my civic duty and voted: that was absolutely fun since I ended up talking for a little while to my old/former neighbor's sister, who's 91 years old.  In the midst of our conversation, I mentioned how often I remember her mom and the conversations we would have across our mutual fence.  The daughter was obviously touched and said "Mother" would have loved to know that I remembered her so often, and most especially our mutual love for gardening.  How I still miss those neighbors!  And how I love our little-town feel, especially on election day when you run into neighbors you -Ok, *I* - don't see very often any longer, due to the DD.

And to top it all off, hubby and I did indeed get to TJ Maxx and managed to fill up two and a half carts of things needed for the house as we will try to get the house into shape for the holiday season - IF we can get it looking like we're not in the middle of the remodeling and redecorating phase which, actually, we definitely ARE in.  (I KNEW we should have simply moved!)

So, all in all, it was a very up and down day.  I know that the next week is going to be payback for all the socializing and feeling "human" that I did today, but it will have been worth it.  Every once in a while you have to turn off that computer in your head that factors in every step you take and gauges it as to how much of a price will be paid.   Of course, with my recent luck, I just hope that I don't end up paying for that sort of thinking by losing yet another body part - I'm really attached to the remaining ones I still have, knock on wood!  (JOKE, I hope!?)

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


  1. What kind of thyroid problem do you have if you don't mind me asking? Mine does not seem to be fitting a category yet it is inflammed. Sorry about your gall bladder joining your other organs in protest against this dastardly thing that ails us. I have upper right-sided pain and a bag full of stones but the gall bladder itself "looks" alright on an ultrasound so it is just another fibro pain now.

    1. I hope that the post I wrote answered the questions you had. Have you indeed discussed the HIDA scan with your doctor? Sorry about the pain. There is just so much overlap that it's often so hard to tell what is what. You then throw referred pain into the mix and you're in even more of a pickle.
      And a thank you for the question and comment. It really helps to know what the reader out there wants to know and/or to let the reader know that I really do want to "share" and exchange. Muchly appreciated! xx

  2. Thanks yes I found your post and I found a description of a HIDA scan, will mention it to a doc sometime I feel up to taking on any more investigation - http://www.melbournesurgerycenter.com/apps/HealthGate/Article.aspx?chunkiid=588194

    Thanks also for the warning in the newer post as to how long it takes to recover from gb surgery (just in case)

    1. Again, just happy that I could be helpful. I wish you the best of luck with the gall bladder as well as the fibro! xx