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.

Wednesday, October 3, 2012

Autumn Venting!!!

Some days I feel as if I've swallowed a pumpkin whole - you know, as in the whole enchilada!  Let me explain, please!

It's been just over a month since I received word that yet another body part of mine had ceased to function.  I'm now going to have to start taking a count of how many more body parts can go wrong since I don't think there are too many left to spare!  Of course, this has occurred because of my funky CFDIS/CFS/ME and fibromyalgia body.  (We're not going to go into all the other problems this ol' body of mine is going through with the skin problems, sleep problems and so forth, or I'd be here for at least a month listing all the problems I have wrong with me and we ARE trying to keep these posts short, right?)

I finally had an extensive blood workup done again and though only one test has come back thus far, I do know it's the one for hypothyroidism (alone) and shows the thyroid levels being within a "normal" range.  It makes me happy, especially given how much I messed things up in the first week or so, first by not taking enough medication (not my fault as we were trying to find the right dosage), then taking twice the dosage, which WAS my fault since I was taking what I thought was the upped-to double dosage whereas in reality, i managed to double the double dosage (get that???).  Fibro-brain at it's best!  But somehow, we've finally gotten to the part of the blood tests which can accurately (huh!) show me what that thyroid is doing.  Further results are pending.

I must admit that in my naiveté or smugness (your choice!) I never expected such a rough road in fixing this problem. Oh girl, your name is "Hubris"!  I didn't expect this rough a road because hey, I'm an old-timer with new problems that are constantly coming up because of this cruddy illness/syndrome/disease that I'm living with and I've learned to deal with what life throws at me - well, up to a point.  I've long ago thrown up my arms and realized that for the rest of my life we will be working on dealing with the symptoms and trying to keep those under control.  For an old-timer like me, there is so very little hope of getting back an even semi-normal life.  

I absolutely do not mean this as a downer.  Instead, I mean this as a reality check and my life as a cautionary tale, especially for those who are "newly sick."  As I've said before, we accept these illnesses in this house, rarely getting too excited about things except for every few years when the poop really hits the proverbial fan and I go into a health crisis that looks like I may very well NOT survive.  Yet somehow those Bulyga and Lisovsky genes take over (the ones that didn't succumb to Ghengis Khan, Hitler and Stalin - that's pretty heady, hardy and stubborn DNA) and though they continue to not be able to overcome this illness, they nonetheless don't let me expire either.

I sort of look at this DD like a long life of "food poisoning."  If you've ever had food poisoning, you're "reassured" that you won't die. However, boy, at the moment of heaving out your guts, that's quite a curse, because while you're going through it, those are very upsetting words to hear! The last thing you want to hear is that it will not kill you.  I call it "threats" and not reassurances.  I most certainly hope and think that most are not in the "food poisoning" part of this illness: but watch it, or you may get there if things go on too long and if you do not do the sensible thing and REST, REST, REST and let your body heal itself!

With this hypothyroidism, I was, yes, concerned about the condition and it explained a lot of what was going on, but I certainly didn't expect it to take such a huge toll on me.  I thought it was going to be simply an unusual stumbling block on my way to figuring out what "new" thing exactly has gone wrong with me now, "big time," something that happens to me every few years when my body takes another nosedive and doesn't recover much.

Well, the stumbling block has been more like a boulder.  Actually, more than one boulder, as in boulders, in the plural. This well reminds me of boulders that some evil giant might put in front each of the Lincoln tunnel entrances going into NYC and there is simply no way that I am going to move those suckers easily, much less bother to anymore.  After all, why would I want to start messing around with the boulders when all is said and done?  Is going to NYC worth it - metamorphically speaking?   I mean really, you can get just about anything you want and need from all over the world these days via the Internet: food, clothes, movies, books.  Who needs New York anymore?  (Choose your battles!)  The "fly-over" states are still being discounted by the big NY/DC and LA areas but the joke is on them: little do they realize that our lives are richer than those who live in the "big cities," which have so little going for them, especially nowadays.  We are the canaries: why would we want to live in the coal mines???  OK, that was a bit off topic.  Back on track!

At any rate, it's been rough getting used to all the new symptoms, many of which I've NOT read about anywhere, which are a result of my hypothyroidism.   Being a person who infamously doesn't remember what all goes wrong with me throughout the day or weeks, it's kind of hard to notice all the strange little problems that go wrong for a CFIDS/ME and fibromyalger combined with hypothyroidism.  It's not until something knocks me over the head that I start to realize, "hey! THAT"S something new!" and look at poor hubby and say, "why didn't you mention that?" or worse "Oh, you think EVERYTHING is a problems because of the hypothyroidism!!!"  Can hubby win: OF COURSE NOT!!!!  It would be silly to even expect him to get a break!  My suffering is his suffering, whether he wants it or not!

So which are the problems I've had the most difficulty with?  I know I will miss a lot of them but I'm here to let you know some of the ones that REALLY are getting to me.
  • Migraines out the wazoo.  I mean my migraine arsenal is not even touching those suckers.  I've given up on most of the migraine meds because, frankly, why poison my system with a medication that's not going to work?
  • My "body migraines" are also out the wazoo and I've pretty much gotten used to the pain and no help.  Bummer as they were also helped by some of the meds I had in my arsenal.  Nothing's helping now.
I've been told by one of my doctors to drink more water - that being dehyrated can bring on the migraines.  Guess what!  There isn't enough water to hydrate me.  I am drinking so much water that I feel nauseated (and do I really want to add more nausea to the mix?) and am still having migraines and body migraines.  Some times there's just no winning!
  • Nausea: I certainly didn't have a problem with this until the whole hypothyroidism started in, around the time I flew to Malaysia.  I have a feeling that the whole hypothyroidism was a result of the trip: it was just one strain too many for the body.  
  • Diet: I also think that Malaysia may have also added to the whole hypothyroidism because I have never done well with sugar and they eat an awful lot of fruit there.  I finally got to the point that if I saw another fruit platter (served with everything you order) I thought that I would heave - quite the trick if you don't have a gag reflex!  And I need animal protein: a lot!  Sorry, but my DNA is Slavic through and through, my ancestors were in the same part of the Ukraine as far back as can be remembered and we ate MEAT!   Don't give me the protein "legumes."  That just makes things worse.  Don't give me the "Mediterranean Diet!"   My ancestors never ate anything remotely Mediterranean.  They ate MEAT!   OK, the fish and no dairy - my ancestors invented the concept of eating vegan - we endure it for the Big Lent before Easter, the smaller Lent before Christmas and a few other minor lents that are scattered around, but once those lents were over, we are hardcore eaters of potatoes and meat.  Herring, thank you very much, is for lent.  Period.  Sugar was honey and little of it at that, none during the lents.  We got our sugar from beets, thank you very much.   So, while hubby needs and calls his spaghetti with red "gravy," "Italian penicillin," I call potatoes and meat "Russian/Ukie penicillin."  Yes, I have some throw-back Mongol blood in me, mixed with Viking blood, but I think they ate their meat too.  So Malaysia was very tough on me diet-wise. 
  • I didn't mention this before, but enough time has gone by that I can't stand not mentioning what really happened as a result of O'Hare International Airport in Chicago - twice directly contributing to the mess that helped start me get into this mess, when it made me stay overnight in a hotel and did not:
  1. reroute me at least to San Francisco, or a west coast city, getting me closer to my final destination; 
  2. did not allow me access to my HGH in the luggage overnight and
  3. added yet another leg to the journey, making me arrive a day and a half late to KL after I had paid for a business class ticket in cash (no rewards!) just in order to get decent service.  
  4. Then on the way back, again, Chicago was a mess: after a lot of very nice personnel and some lying personnel, which ultimately dumped me into "steerage" from Chicago to Pitt, whereupon landing
  5. my cane almost hit my head because the flight attendant put it in the overhead compartment in a way which guaranteed it flying out when the overhead bin was opened (I'd tried to warn him but I was already on their poop list because I pointed out that I was supposed to be in business class and they wouldn't believe me until someone finally looked up the codes and whoops!  Mistake made.  So sorry, but you don't mind - NO, of course I didn't mind, I love throwing away money I don't have and paying 4 times the steerage rate just to sit in steerage!)  A blind woman was sitting one seat away from me - whom I didn't notice because I was THAT sick (behind in my meds because of plane delays, etc.) - and my cane only missed hitting us because we both instinctively jumped when we heard the "whoosh" of the cane coming down. 
  6. However, the woman who opened the over-head bin was so startled by the flying cane that she jumped back enough to get a huge momentum going with her VERY heavy bag and hit me along the shoulder and neck area as if I were a ball and her bag were a bat, and then I was hit by various women and their luggage as they came down and kept banging my shoulder/neck/head because they all tried to carry 4 pieces of luggage down very narrow aisles in order to not have to pay for the extra fees for too much check-in luggage.  
  7. When I then had the "audacity" to make a complaint about being hit and also about being put into "steerage" that meant that the fire department, paramedics, security, police (with their guns proudly displayed), representatives of the airport (PR and lawyers) and the airlines (PR and lawyers) all descended and tried to get  me to sign a waiver that I was not hurt: were they kidding me???? 
  8. I finally called them on it and asked if it was necessary to have guns out when I was obviously not a terrorist but a injured woman in a wheelchair and were the lawyers necessary since I would NOT be signing any statements until my husband arrived and could you please take off the blood pressure cuff because if you look, you'll see my hand has gone purple, and it's my very obviously "crippled hand/arm" and you are definitely too stupid to get a reading off of me (I just thought those last words...I DO know when to stop!)  This was just the beginning of the fiasco which lasted for well over two hours.  Ah yes... don't fly those friendly skies if at all possible.  Even business class gets treated like cattle and if you're in a wheelchair, forgetaboutit!  You aren't even human!  Fact of life!
  • My fatigue is worse than ever, which is something I never thought I would ever write or say again: after all, how in the world could I be more "tired" than I was when my body stopped making Human Growth Hormone (HGH) and in the end I was carried out of my daughter's college graduation, just as the graduates were coming in through the doors to their seats?  Later, I ended up falling asleep in the car ride home (8 plus hours) eating something and falling asleep and chocking on my food (oh yeah, that was a fun ride) and having to be hospitalized a day after reaching home for such disgusting things that even I won't go there, all because I was so far gone and everyone was trying to cut through the red tape to get me my HGH in order for me to not die...fun  memories (not!)  Truly, it's a miracle that any of my kids still talk to me!
  • My brain is too tired to work.  I'll watch a show with hubby and I've noticed that my brain turns off for a second or two, going who know where and I've lost the plot of the story.  This happens to me several times during each show and were I not trying to distract myself from my "uncontrollable" pain and way beyond the misery-inducing fatigue, I wouldn't be watching at all.  Thank God for DVR's!  
  • I'm hungry, I'm not hungry.  Oh, I don't want to eat.  Looking at food just makes me nauseated for the first time in my life.  Thinking of food makes me nauseated.  But I am HUNGRY!  I eat a bit, stop and give back the bowl.  This from a person who finds it impossible NOT to finish everything on her plate.  This is from a person with an iron belly, the only part of me that I could rely on to always work!
  • This will sound so vain, but my skin has NO elasticity to it.  My body looks like that of an 80-year old!  This is NOT supposed to happen with my genes and is not acceptable.
  • The sweats and chills are in a league of their own: in their own Hall of Fame division.  I thought I had it bad before?  This is ridiculous.  And with drinking all that water, the runs to the bathroom alone are wearing me out.  Is there an Olympian event for CFIDS/CFS/ME and fibromyalgia and drinking water and then running?  Should be. 
However, on the plus side: 
  • Maybe the hair and eyebrows that I'd worked on for so long with the Rogaine and other products, which was all unraveled by the hypothyroidism, will start coming back in now that the thyroid is up to the right level!  (And maybe I'm jinxing myself?)
  • My frozen ankles, tied in with the neuropathy, are starting to flex again!  This was a first!  I was shuffling along these last few months and couldn't for the life of me figure out why my ankles wouldn't bend.  Looks like it WAS indeed tied into the thyroid problem.  Let's hope so!  
  • My hoarse voice tells me that "whoops! You've not taken your thyroid med."  I've found an easy solution!   However, I still can't get the coughing under control at times.
And this is the reason that I feel as if I swallowed a pumpkin, whole.  My hoarse voice, my nausea, my hunger, my being too full, the skin that's no longer elastic...need I go on?

Yep, CFIDS/ME/fibro's a bi-atch.    

In the meanwhile, I hope everyone's feeling their best, only much, much better.  Ciao and paka!


  1. What blood tests do you suggest to get a true read and comphrensive treatment plan for fibro?

    1. I just wrote a post on this, Linda, and will hit "publish" in a few moments. I hope that the post helps more than a comment here! xx

  2. Irene -
    After reading your post, all I can say is - Bless your heart.

  3. OMG, my dear. The hits just keep on coming, don't they? In spite of it all, and
    I'm not sure how, you still have a wonderful sense of humor. I'm putting a hit
    out on the airline personnel who treated you so poorly! May the dung of a thousand
    camels...well, I'm sure you've heard that one! Sharon

    1. Thanks, Sharon, for YOUR humor! I really do appreciate it! Dung and camels! Hysterical! xxx

  4. I really hate Fibromyalgia. That's an understatement. Thanks to Fibro, my vocabulary is so affected that I can't come up with the right word to describe how much I abhor our disease. And, God-forbid it finally be legally and medically considered to be neurological and/or immune-related.

    I was diagnosed in 2004. I still get new, bizarre symptoms. A few years back, I woke one morning to my left leg collapsing when I put any weight on it. That finally went away. Approximately 3 months ago, I developed intense itching in the palms of my hands (imagine handful of mosquito bites). The only thing that helped was my Neurontin. Speaking of...

    I HATE Neurontin. I can't lose weight to save my life, my ankles and tops of my feet are swollen, I have cotton mouth, blurred vision, a tad bit of anger (some of it is legitimate), etc. But, it controls the itching in my palms. It also controls the twitching in my back. Why wouldn't I have RLS in my back - rather than in my legs?! It's directly behind the areas in my abdomen where nerve damage exists (thank you crappy surgeons). The Neurontin also 'controls' the nerve damage pain and the Fibro pain. I have to take 300mg of Ultram to handle the breakthrough pain. My therapist taught me to meditate and self-hypnotize but, they only help so much for agonizing, non-stop pain.

    I've been tested for everything - because everything has to be ruled out before the Fibro diagnosis. I also have all 18 trigger points, the migraines, TMJ, irritable bowel (I laugh when people talk about eating fiber - I think that would kill me), and a host of other ailments related to Fibro.

    My rheumatologist still believes that Fibromyalgia is some sort of virus for which there is no accurate blood test yet. He's sure that those with Fibro were predisposed to it (through genetics) and that a physical trauma flips the switch. For me, that was 2 abdominal surgeries within an 18mo period - both surgeries also took place when I was very weak, very sick. I never really got better.

    I have a very distinct memory of my first Fibro symptoms. The first 2 symptoms began 6 months after my 2nd abdominal surgery. The first two were widespread pain and a chronic heightened sense of smell. Then my seasonal allergies became perennial and didn't respond to a year's worth of allergy shots. Then my brain fog began, my photographic memory disappeared, my sleep dropped to 3, interrupted hours per night, I rarely dreamed (I still rarely dream - this is due to the REM issues for Fibro patients).

    As for bloodwork - who the hell wishes to have a positive test?? People with Fibromyalgia. We just want something to be found that can be treated/cured. I've only had 1 elevated level in the years AND years worth of in-depth blood tests - IgM. And it was borderline elevated. I now take a certain probiotic twice per day, with meals. I haven't been retested but, it's not worth it.

    Anyway, the timing of your blog post is a kick in the crotch. I posted a tad bit of a bitch-fest on my Facebook page. I'd share it here but, there is a certain 'f' word repeated at least 8 times.

    I hope you feel better, I hope I feel better, I hope we all feel better. Hell, I hope we just feel like 'normal' people again. : )

    1. Hi Labyorkie! I know what you mean about the "f" word: you should see some of the stuff that comes out of this mouth on some days - posts that really, really need to be rewritten. It is a heck of a disease.
      I'm glad that it sounds like you have found a really great rheumatologist who's been lots of help to you and obviously believes you, which is quite the feat, I truly believe. Living with all of this is definitely not pleasant (imagine what I'd really like to say and you'd probably be right!).
      Yes, I too have a love/hate relationship with Neurontin, but because I had to go so long without its help (that is, it was only a dream for so long) I don't care TOO awfully much about the weight issue and other problems with N. It's been a lifesaver for me. I WAS on a LOT of it and have come down to only one 300 mg capsule and that's helped with the weight issue as well. But no one better take it away from me!!!
      Your anger is absolutely justified in that it is an absolute crime that fibro and CFIDS simply aren't taken seriously enough. Ask your rheumy how many talks are given on fibro and CFIDS at any of the annual meetings? Even the ACR has pretty much washed their hands of us, in no small part because financial compensation is simply not there! A dermatologist will take a skin tag off which takes how much time and get paid how much while a rheumy spends how many hours on us and gets reimbursed how much? It's a crime! xx