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, October 19, 2012

Friday Tidbits: But This Is My Life Every Single Day!

Hi all!  In case anyone is counting, it's now been a week since my very unexpected surgery.  Here I am, writing in real time, having snuck up to my computer while no one's watching.  I thought I'd catch everyone up on what's been going on with, yes, the tidbits of my life, so to speak!  

As always happens to those of us with CFIDS/ME/CFS and/or fibro, nothing goes smoothly and things always end up being pretty hysterical - "hysterical" as in funny.  When I made the "heroic" decision to not have my gall stones removed a couple of years ago, I thought that I couldn't make that commitment because we never knew when the other shoe would drop and my daughter would need me to be with her at the "major medical center."  I felt I wasn't able to allow myself six weeks downtime.  Well, it's now Friday, so I thought I'd give you my thoughts in bullet points - just to keep that "Friday Tidbits" going: I do like a little bit of predictability in my life.

  • Well, Surprise!  WHAT???  Going back to my "downtime."  I've learned, in the last few days, that my downtime will be more like six months!   The craziness is that I didn't realize that getting your gall bladder out was NOT like getting your tonsils out, even taken out as an adult.  Because of various complications with my tonsillectomy, I was in the hospital for five days, the usual being that you're sent home soon after those suckers are cut out.  It wasn't even as easy as my emergency hysterectomy or emergency appendectomy. Nope.  (See a pattern here?  I don't tend to get parts removed until need be!)
  • As it turns out, the gall bladder is an organ vitally needed and the body has to make large adjustments. Throw in all the extenuating factors, that my body hasn't recovered from, the compartment syndrome surgery almost a year ago, that I am a super-sick mama with CFIDS/ME/CFS and fibro, that I'd undergone a trip halfway around the world just a few months ago and then had undiagnosed pneumonia on top of it all, that I'd developed hypothyroidism within the last couple of months, with a gall bladder that looked bad (inflamed) and stones that had nastiness around each of them: well, you're talking about the perfect storm.

Here's the beauty of it all, however.  But let me backtrack for a moment. (You didn't really think I could go a whole week without backtracking somewhere along the way, did you?)

  • My surgeon was absolutely fantastic as were all the staff.  He actually sat down on my bed (huh? hadn't he heard that doctors don't go into the patient's space any longer?) and then invaded my personal space again, getting INTO my face, making contact with both eyes to make sure I was listening to him.  Dear God!  Did I focus at all about what the man said?  Of course not: I may be old but I'm not yet blind!  All I could focus on was how much of a hunk he was, still, after 20 years of my not having seen him anywhere around town.  As he talked more and more about the surgery, I couldn't help wonder, did he regret going into medicine and giving up football?  (We know way too much about everyone in this town!)  Those eyes.  The white hair: why do men get to be better looking with age?  Too bad I don't have a bunch of local friends any longer so we could dish!   Darn!  How was I to take things in with such a good-looking hunk doctor?   Like I said, I'm only human, not dead!  And much to the dismay of many, I AM truthful!  You're just getting the facts, oh dear reader!  (Oh no!  What did I say when I was under???)
  • It wasn't a short little pep talk either, not once of the three times he gave me "serious talks"!  No, he gave me statistics as to how much healing would be accomplished at the end of a day, at the end of a week, at the end of three weeks and right on up the scale to six months.  Hearing those stats was pretty shocking.  Ah, but did they stay with me?  Of course not!  There are all sorts of statistics as to how much a patient retains from a doctor's visit: it's only about 10%.  Well, someone should do a study on how much is retained when the doctor's a hunk - and then when you're zonked out on pain and/or pain meds.  Good thing that the doctor knew to give out a lot of handouts, and not those wimpy sorts given out by hospitals, but tailor-made for his patients and the type of surgery with or without complications.  I suspect I got the "more complications" sheet.  Plus I now know that he's a REAL doctor because the added instructions were in awful doctor handwriting.  (Hey! The man had to have SOME sort of "defect"!)

(Oh good Lord: I just got a look at the description of the laparoscopic removal - excuse me as I need to run to bathroom and barf!)

  • The hospital experience was actually quite fun.  I saw a few friends I'd not seen in ages.  People come and go more or less as much as they want and that is one of the reasons I love going local.  I was there so little (in and out) that my priest didn't even get a chance to find out I was there.  I heard one team doctor yelling that he didn't give an [expletives] what the [expletives] insurance companies wanted or didn't want but I wasn't going home until he [expletives] was good and ready to send me home.   Sigh.  I hear this sort of thing every time I get admitted: you can absolutely see just why the insurance companies do NOT want to recognize CFIDS.
  • As is usual, when the 3AM hour rolled around and things got quiet on the floor, the staff's guards are down and they talk to you about the real picture of what's going on.  But a funny thing happened: someone had seen me doing my DIY facials on day #1 and wished she could wear moisturizers without breaking out.  After this "youngin'" left, I thought about it for a moment, then ran (OK, so I "hobbled") to my makeup area and took out three moisturizers (of several I just happened to have with me!) and called the young lady, asking her if she could come by, "when you have a chance, nothing important."  When she came in I asked her if she'd like a tiny demo of what a light moisturizer felt like, what a medium one felt like and what a heavy one felt like, explaining that the light one would be best for summer.  Someone found out about this and before I knew it, I was giving out advice on mascaras - I only remember because I didn't have my tube of Blinc mascara, which I've tried a couple of times and been very fascinated with: it coats your lashes like a tube and doesn't come off until you take it off the way you're supposed to.  I happened to have a few blushes (how???? I have NO idea!) and gave a few pointers there as well to someone else, all between bouts of pain.
  • When I did come down with a bit of a melt-down, it was a nice - though extremely embarrassing - moment.  My body had reacted to the thyroid medicine the day before with a tiny rash that I thought was due to stress and I never thought to mention it to anyone, it was just so "ordinary."  The next day, after surgery, I was given the thyroid med again and I got a bigger rash, developed invisible itching areas and parts of my body started displaying hives - I was totally miserable and was trying to avoid a steroid shot like crazy.  Now this was the final blow.  No one could figure out what was happening until I looked up hypothyroidism and skin rashes on my trusted iPad and found that a rare reaction much like what I was experiencing is known to occur if the brands are switched around; to make it easier to understand, it's basically a filler/formulation problem.  Well, given that I was in pain, that I'd not slept for how many hours (minus the operating time, when I woke up in recovery and asked if I could walk around) not having eaten in 60 hours and nothing to drink in 48 hours, all my defenses were down and I just lost it, saying "but this is my life every single day!"  They thought that everything that was happening was "unusual" and that I was just "high-maintenance" for the moment.  No, my entire life is high-maintenance.
  • The poor nurse. She moved her things into my room and did her work there and would break off to talk to me when she thought I needed a kind word or just to talk, or if she was needed elsewhere.  I felt like a wimp but frankly, didn't care any longer.  She, on the other hand, couldn't believe that anyone could go so long with no sleep and kept mentioning that to everyone as if THAT was the biggie at play.  I tried to impress upon her that what she was seeing was just a tiny bit of my no-sleep problem.  As with everything with these illnesses you can't believe it unless you see it for yourself.
  • And finally, here's the "beauty" of all that happened, the part I digressed from in the beginning: I want to mention the great support of the CFIDS/ME/CFS and fibro community.  Thank you to one young lady for tweeting all her followers to pray for me regarding surgery.  It was sooo sweet to see that on twitter.  (I hope I didn't imagine it!)  Thank you to so many who prayed on your own for my successful surgery.  And thank you to a special reader for the info you sent me regarding tips on how to take care of myself after coming home.  Had it not been for your words of advice, I would never have realized how careful I had to be, thinking - before you'd written your comments - that I was having nothing more serious than any previous surgeries.

The pain is mostly gone.  In fact, true to form, I'm actually feeling far less pain now than I feel on a "normal day."  I am convinced that this happens because my immune system has something to fight against (the healing that needs to be done) and consequently the other parts of my body get a rest.  My biggest problem now is huge weakness, worse than I've ever had, which is saying a lot.  My mind can't get around the weakness because its bedfellow, pain, is missing.  I do still have trouble talking, thinking, walking, feeling overwhelmed.  Not to jinx myself, but on the whole, this has been a reprieve from my normal life.

As usual, I hope that everyone out there is doing their very best, only better.  Happy Weekend to all!   Ciao and paka!

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