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, December 26, 2012

Zebras Rather Than Horses?

"Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace."           ~Victor Hugo 

Yesterday and the day before (Christmas and Christmas Eve, respectively) turned out to be a bit of a surprise, and not just an "Oh! surprise?"  but a  completely out-of-the blue surprise.  At least it was for me, the person who has the dreaded CFDIS/ME/CFS and fibro with a list of complications that reads almost as long as a Victor Hugo novel.  (Which reminds me that I do want to add a page to this blog where I actually list the symptoms of CFIDS/etc and fibromylagia, the symptoms I have, as well as those I've managed to miraculously escape thus far.)

But first, on with what I have at hand.  I've written about red herrings and the major military operation which I've now dubbed "The Hunt for Red October" (see link).  There I explain that I know that I have "something new majorly wrong with me," the condensed version here.  Finally, my GP and rheumy are now trying to get down to the bottom of it all, scheduling in specialists from other fields, but what slows us all down are these red herring which are constantly being thrown in the way.  My GP and rheumy, I believe, as well as even the ER docs, are starting to look for zebras and not horses, so to speak.  Things are just too strange, too weird, too unexplainable, but very annoyingly THERE

Like most of my family, I've been fighting a particularly nasty strain of a GI bug for the past year or so.  OK, perhaps they're not fighting a bug every other day, like I am, but they are fighting it regularly nonetheless. It's the warm winters, I tell you.  Well, that and the "fact" that someone had to have stepped on a mirror and broken it: it's the only reasonable explanation for our cruddy streak of bad health, I tell you!  We have definitely become frequent fliers to the ER and even for hospitalizations. 

Since a couple of weeks ago and the visit my GP and then my surgeon the following week, I've known in the back of my mind that I wouldn't be able to do any cooking or baking of the Christmas Eve Dinner, my favorite day and meal of the year.  Worse, I wouldn't even be up to sitting in the kitchen to command  instruct hubs and daughter as to what needs to be done, explaining the details that are kept out quite unintentionally (Ha!).

You need to understand that Christmas Eve dinner is absolutely sacred.  It's the day with the meal which as a child we were not to eat anything at all until the first Star in the Sky stood out.  (Luckily, we were not on Daylight Savings Time!)  Then, since we were still observing the Advent lent, the 13 traditional food on the Christmas Eve table were vegan.  Some of these foods were made only once or twice a year, so there was a real specialness towards Christmas Eve.  I was always most certainly interested in the food than in the gifts which would arrive the next day.  Better yet, we ended up celebrating two (yes, you heard me, TWO!) Christmases, one on December 25 when we would get the majority of our gifts (and awful gifts they were: dominos, cheap plastic comb and mirror vanity set or pj's and socks).  We were definitely poor.  Then on Russian/Ukrainian Christmas Eve and Day, we were able to repeat the whole kit and caboodle on January 6th and 7th with our Godparents and Grandparents giving us presents on Eastern Orthodox Christmas and all the foods were served once more for Christmas Eve and Christmas Day, the latter with meat, dairy, etc.

Since I've been married (to a Catholic) we've made compromises.  We do the whole kit and caboodle Christmas Eve food, most of which hubs won't even try to taste because he is THAT picky an eater.  As a consequence, we've always had to make a few compromises on which foods would be on the table so that he and my picky kids would have something to "enjoy."

And I am such a Christmas fanatic!  Not only do I cook and bake most years, decorate the house to within an inch of its life (though as elegantly as possible) and then on top of it all.... Well, I had a large dining room table custom-made which will seat 14 people quite comfortably, as well as Christmas China that will serve about 40 people, all so that the kids would never even think of not coming home for Christmas.   Christmas is MAJOR around here!

Well, as they say, "man plans, God laughs."  As much as I've always wanted those kids of mine to never even consider for a moment that they won't come home for Christmas with their spouses and vast numbers of children, the joke's been on me.  Elder son is always living in some most inconvenient corner of the world thinking he's some sort of reincarnated Indiana Jones, but for the fish farming community - or perhaps it's Crocodile Dundee?  Who knows?  He's not around much any longer.  Child #3 has his own thing that he does and that leaves daughter of mine to make it home for the meals.   However, I swear, half the time I think she does so only because she wants to figure out the little secrets of the recipes served for when her time comes.  

So, why am I going on and on about this?   It's because I want you to understand the magnitude of what happened on the day before Christmas Eve.  I was sicker than any proverbial barnyard dog and my daughter had tears in her eyes from seeing me just that sick - actually, since she's seen me almost dying how many times, those tears really freaked me out!  My neuropathy was spreading and painful, most of my hand from last year's surgery was swollen and four of the fingers were now numb, pain moving from my gallbladder surgery sites to other parts of my body and returning, I was experiencing  migraines and body migraines, the list went on and on.  We huddled up together (between unpleasant runs - hubs carrying me - to the other room when necessary) trying to figure out if an ER visit was necessary.  The pain was off the chart, there was new stuff I'd never felt before, and I must have looked like death warmed over.  (And I definitely didn't want to go with chipped nail polish!  Priorities, ladies!)  I finally decided against going, not wanting the nasty "invisible" illness treatment that usually happens when coming into an ER with anything less than an ax through your head.  Funny, I actually saw that once, and the guy was sitting out in waiting room...truly!  (But I digress!)

On Christmas Eve I felt somewhat better (the usual pattern now going on for months) but I finally had to make a "mature decision."  I called hubs up from the kitchen.  Oh my yes, I guess he does indeed love me if he and my daughter spent two days cooking food that they wouldn't for the most part be eating!  (Although that could be a guilty mind and/or seeing how pathetic I looked and sounded.... now those are reason that I do NOT like!)  At any rate he  and #1 daughter came into the room and I told them that there was no way that I'd be able to get down the stairs and then sit at the table eating.  We would have to eat in our bedroom and keep me in bed.  The relief on their face was priceless.  The burden removed from my shoulders was almost miraculous.  

We ended up having a wonderful dinner, laughing, joking and having a very low-key dinner, though with Christmas China, of course.  But what a sacrifice on my part!  We almost never eat in our dining room.  I have a special tablecloth and napkins just for Christmas Eve and then a selection for Christmas Day.  We had to skip the beautiful table centerpiece we'd ordered for the first time in years and not able to look at the Christmas tree which I was finally able to help decorate a little bit - although I managed to break three very special ornaments, plus a foot-tall Christmas angel, cracking her porcelain wings.  Worse, I know that had anyone else done this, I would have been as angry as a hornet whom a crazy person'd had the nerve to disturb.  Yep, it was definitely time to get  back to bed for me.

By Christmas day I couldn't get out of bed either.  We had dinner in my bedroom again.  However, by 3AM, I was so sick that we ended up calling an ambulance to get me to the ER.  There, testing was done and though everything came back more or less "normal," (high BP for me at almost 150 over whatever, up from it's usual 70/50 lately and temp 98.6, up from my usual 95.5).  They did a CT scan with the dye and found that I was "clean" of whatever.  However, they discovered "atelectasis," a partially collapsed part of one of my lung lobes, not surprising with the gallbladder surgery, the pneumonia and perhaps even the "newly-diagnosed" hypothyroidism.  Thank goodness we'll be seeing my endocrinologist in a just a couple of weeks.  To see him will be like preparing for a grad school exam.  I need to write everything out as coherently as possible, in brief bullet points as to what the newest developments have been and then the prioritization I believe is needed, to then be compared to what HE actually thinks.  I swear, I think 5 eight-hour days would not be over-doing it, but alas, I'll have only about an hour.  

A slightly funny thing happened today as I was leaving the ER today.  The ER physician (whom I've never seen before) was almost apologetic that he couldn't find more that was conclusively wrong with me, number-wise, so that he could have admitted me to the hospital.  It as a strange moment because I've not gotten this sort of "feeling" or "hinting" in at least 20 plus years.  He was about my age which would put him into that, "Golden Era" of physicians as far as I'm concerned.  There was something about his being that felt as if he was pretty certain that I shouldn't be going home but up to one of the floors where real workups could be done... something that no longer happens in our era.  It was a very bittersweet fraction of a second, but it was there, and it gave me a glimmer of hope: someone BELIEVED

And so, going back to Victor Hugo's quote, appropriate, given yesterday's release of the movie version of "Les Miz".  Unfortunately, I'm too sick to go see the movie, but I read the book back in 8th grade and loved every minute of it, and have been lucky enough to have seen the stage production a few times.  I do think I've always had it in me to think that it would serve me well to show courage for the great sorrows in my life, while showing patience for the small things, though in full-disclosure, patience has always been a downfall of mine, no matter how much I've worked on that alone.  However, and unfortunately, as a CFIDS/etc and fibro, I have trouble going to sleep at all, a little bit of spoilage in the ointment, no matter how virtuously I may I act.  

And finally, next year I'm ordering a tiny tree for my bedroom as well.  If we get stuck eating any Christmas dinners in our bedroom again, I want a tiny tree nearby that I can see while eating all the wonderful food.  

And so, as always, I hope all are feeling their very best, only better.  I hope that those who celebrated Christmas had a truly special one.  Ciao and paka!


  1. Merry Christmas, Irene!

    1. Thank you, Martha. Merry Christmas and the best of wishes for you and your family in the new year, full of wonderful health, success, and the greatest of all things, much love in your life! xx