About Me

My photo
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, March 28, 2012

Laughing and crying about beauty and medical centers...

The wedding dress bought at B.Altman's, 1976.

Laughter. It's sort of what I've always been "famous" for in my family.  But it was on Friday, August 13, 2010 that started me on my path to laughter which would make a world of difference in our family's life. We'd always laughed, but never under such trying circumstances, an understatement.

You see, my daughter spent many weeks in hospitals in the past year and a half, starting on that dreaded Friday the 13th, with many long hospitalizations.  It was absolutely the worst time in our family's life, bar none.  Not to put a damper on things, but we almost lost her, more than once, and are still in a state of shock, all of us trying to recover from the nightmare(s). It was a relatively rare disease and though we were fortunate enough to have had some of the best doctors in the country on her case, finally in a hospital that's ranked number two in the country for her illness, even those doctors were stumped, the ones at the medical center she was suddenly transferred to one night during her third local hospital stay in three weeks.  They, the world's experts, had never seen anything quite like what was happening to our daughter. It become so horrid that on one particular day I remember about twelve doctors coming by with their teams of residents and fellows - during her fourth hospitalization there, perhaps?  It was such a madhouse that there was a backlog...the docs and their teams were lining up in the hallway, awaiting their turns. Never had I seen a sight like that before, or since, anywhere!

I can laugh about that day now, but at the time it was very frustrating, scary and maddening.  My daughter was so ill that she remembers almost none of this, but when she could talk to where we could actually understand her, she was definitely not the sweetest thing to come along.  She'd always been healthy and perhaps did not have the skills needed to endure the repeated tests every single day, twice daily, swollen arms and hands from so many "sticks," the weight loss of 45 pounds in just 25 days because she couldn't even swallow water.  On the other hand, who does have those skills?  Her pain threshold was supreme, something that her pain management people woefully did not get at all. Having been in the pain field as a patient and knowing more than a bit about it myself, as well as having access informally to very well-informed medical sources to check my supposed knowledge, it'll be a long time before I can forgive some of the docs involved in her case, as well as more than a bit of misinformation, on every one of her seven hospitalizations in that medical center alone.

But my reason for writing about this?  Well, I'm trying to make my posts shorter so I'll come back to other reasons in the future.  I'll just make one, (or two?), observation at the moment.  And that is...

First impressions, added with laughter and inside jokes, count!!!  I cannot believe the difference in "attitude" I received by staff, be they nurses, aides, "junior docs" or attendings, by the way I looked!  I realized this quite early on and it was maddening, but like everything else at the "medical center," it was trying to play the game - of Life! - to your best advantage and for extremely high stakes.

First of all, let me say that there was no one more surprised than myself that suddenly I had this energy to stay with my daughter every single day she was in the hospital, not leaving her side 24/7 unless another family member was there to spell me - her dad or one of her two wonderful brothers. It was a complete family affair, I'm proud to say.  If they weren't able to be there, I'd pick someone and put them on notice that I was making that person responsible for the minutes I was away.  In all of this insanity, my maternal instincts kicked in full-speed ahead and an extremely productive and dangerous lioness came out.... A crazy one at times.  I'm still angry with some of the physicians whom I had extreme arguments with...who will, most probably, forever be on my "poop" list.  I'm a mom...what can I say?  Worse, I'm a mom with an education, learning skills, an inability to be too cowered by authority and armed with excellent sources of medical information, often better than the ones at the medical center.  Unlike most, I was not scared of anyone or anything but my daughter's disease.

On the other end of the spectrum, there are the incredible physicians, and one surgeon in particular, who literally saved her life and then gave it back to her in a way that is enabling her, as well as the rest of the family, to have a life definitely worth living and enjoying.  I thank every guardian angel, human or otherwise, for having been there and who continue to help our entire family.  God's best idea: Guardian Angels - after daughters, that is.

But back to first impressions!

I've always known that the way you look affects the way people treat you.  It's a fact of life, sorry to say.  I first tested this at B. Altman's, one of my favorite 5th Avenue department stores, back in our "salad days" with my new hubby.  One afternoon I happened to be browsing, looking at coats specifically, and not one sales person came to ask if she could help.  Usually, you get eons of salespeople when you just want to be left alone to actually think.

Walking back to our apartment (the 50-cent bus fare was just too much for our budget) I started dissecting the no-sales-lady experience.  By the time I got home, I realized the problem.  I didn't look like a bum but I did look like a student who had no way of affording anything in the store.  Everything about me that day screamed "student": the pulled back hair in a barrette, the very little makeup, the jeans.  Understand, this was the mid-70's - a time when many restaurants in New York City wouldn't allow a lady wearing an elegant pantsuit to enter their premises, so imagine the impression of jeans in this very "establishment" store!

I was a bit heated about this and just couldn't let things lie.  The following day, I rolled my hair (no blow dryers available yet, nor any good hair products), put on my makeup very carefully and especially elegantly (though how elegant can a 24-year old be?), my nicest "outfit" with the buttery suede jacket and the beautiful brown high heeled boots I'd splurged on in Rome (yes, Italy...it was a chartered flight!) and faster than you can say "prego!" I had, at the very least, five sales ladies come up to me, immediately, in the very department I'd browsed the day before, each one trying to tempt me with other coats I might not have noticed.

That lesson has always remained with me.  I tend to have a weight problem due to this DD.  In my better times my weight is good.  I'm not thrilled with it, but I can live with it.  But I always say you can tell how I'm doing by my weight.  In my worse times, my weight starts getting up there.  And believe me: people, across the board, in every aspect of your life, treat you better when you're thin than when you're heavy...from the person at the supermarket to doctors.

So, when my precious daughter got so sick, you better believe I forced myself to dress in a friendly fashion, even going so far as wearing different cool boots or a cute handbag or fun watch which inevitably I'd get a reaction to, making the interaction that much more human and friendly, leading, of course, then to laughter, often breaking the tension.  And that was one of my prime reasons for being there.  I tried to make my daughter laugh as much as she could handle, even if it was at my expense or me playing the fool.

I learned to leave my daughter's side about every 24-48 hours when I started to get a bit ripe and in twenty minutes I could get to the hotel room, shower, do my hair, put on vast amounts of beauty products to get the new no-makeup look, pat just the tiniest bit of lovely scent on me and rush back to her room.  Twenty minutes!  I can't even wash my face in twenty minutes on a normal day, but my daughter dying gave me strength that I truly believe Clarence (remember, I recently named my guardian angel?) and God gave me all those weeks and months.

But I'd like to add that there were a few days when I looked far worse than anything any cat could drag in.  Those were the days that I was not noticed, totally ignored and not made a part of the discussion of what was happening.  Coincidence?  I think not.

So, my advice to all:  first, everyone who is ever in a hospital needs a health-advocate. This is PRIME!  Mistakes are made, staff gets overloaded, "junior docs" don't read charts, attending's can all too often be aloof, arrogant, or worse, clueless, especially in a place so large where the left hand doesn't know what the right hand is doing.  You absolutely need someone there at all times to help your loved one get through the whole process - hopefully, alive!  (And yes, I do want to have a long and in-depth discussion with the CEO of the medical center - not to be too hyped up on myself, but I do think he could learn a few truths about what is really going on in that establishment. Much good, yes, but there is bad too: very bad.)

Secondly, I've forgiven B. Altman's for the way they treated me that day I wore jeans :). I mourn the day they had to close that wonderful institution.  After all, I even bought my wedding dress there...and it was a very classy experience, certainly too classy for this young girl on a very limited budget.

(And if anyone wants to experience a great read of B. Altman's in their heyday, there's a wonderful book by Adriana Trigiani, Lucia, Lucia!, a fun and sweet novel which describes New York in 1950, living down in "The Village," and working in the couture department of B. Altman's.  Any guys out there may want to give the book a pass, but it's a bit of magic for the gals out there.  Not too off-topic, am I?)

But the biggest advice I can give here: keep up your sense of humor. Each person, from the transport people who would wheel my baby in her bed down for tests, to the nurse's aide who got my daughter addicted to some sort of banana Popsicles, to the night receptionist who loved to joke with me about our mutual love of the smell of new leather, to the Ukrainian nurse who held my hands in those first days when I knew absolutely nothing about this illness - had never even heard of this darn thing - when we joked about whether Russians really couldn't understand Ukrainian or were they pulling our legs? (as we spoke in Russian and not in Ukrainian), to the EEG technician who talked to me about the Russian Orthodox church nearby (that I never, regretfully, got to) and then went through our six degrees of separation to see who we might both know in the nation-wide Russian-American community, to the Romanian aide who would try to get my daughter to do all that walking - and talking about the foods she taught her daughter to make, to the Romanian cleaning lady who told me that my smile was too beautiful to sacrifice for tears...everything was made more endurable with humor and laughter.

Well, that and a bit of mascara.



Tuesday, March 27, 2012

My Hair and Beauty Outings...

Don't we all want to come home from the hair salon looking like we did in our 20's?


On Saturday, I will hopefully have an appointment for my hair with a few other goodies thrown in. I've now gone at the very least eight months since my last hair appointment and I'm looking especially pathetic and old, gray and dull, not to mention "holy," which will become clear in a moment. I'm always worried about the whole process because of three reasons.



First: This visit has me particularly uneasy because I've been so sick that we've lost count as to how many appointments have had to be cancelled at the last minute.  I feel like a second-class citizen when I walk in after so many cancelled appointments.... I just hate being so unreliable. Really hate it.

Secondly, I must admit that I do have a real love/hate relationship with going in for my beauty adventure.  I always say, with no sarcasm or exaggeration at all, that I'd rather have a root canal done than go in for a hair appointment.  You see, my hair is very fine and thin...and getting thinner every day, unlike my body (groan).  About 15 years ago, I finally found a miracle worker in Pittsburgh, an hour drive well worth the "health cost."  I'm trying to figure out how my talented and imaginative Diana will attempt the latest challenge - a four-inch bald spot that resulted from the incident I had with my arm/hand back in November. She was already working around two other bald spots but they were just babies compared to what I've got going now.  I've been using men's Rogaine foam (I know it says that it's not to be used for women but I did some research and it looked kosher for my needs) plus Phyto vitamins for hair, something that's helped me in the past.

However, I am arming myself with pictures of when I discovered that crater, six WEEKS AFTER coming home from the hospital.  Did no one think to mention that I had this huge white scalp showing in the back of my head? Did they honestly think that I wouldn't notice it eventually??? Plus, because of that tiny problem of my almost dying a few times during that hospital thing, my hair in general had started falling out.  Anyway, I'll have those pictures for the moment Diana sees that huge hole in the back of my head and mentally throws up her hands and finally admits defeat. Poor woman needs some hope that this latest bald spot at least has a chance of growing back in. Should be interesting.

But going in for my beauty adventure is always an experience I dislike/hate for many reasons despite the fact that the women (and men) who work there are wonderful.  I love them all.  They are kind, not noticing how ill I am without appearing callous, yet never condescending nor unconcerned, yet at the same time appearing not to notice my cane. Hard act to do well!  Of course, I don't know what goes on behind my back, but  I do love two women there especially, Diana, the aforementioned hair genius, and my newest discovery, Lan, who does a beautiful job of dying what I have left of my brows and lashes so that they can be seen.  I must admit, however, that I'm so looking forward to Lan noticing the bit of growth in my brows from the hair growth products I've been using as religiously as a person with severe CFIDS/ME/Fibro can, and will be crushed, I know, if she doesn't see a difference.

BTW:  Having discovered dying of lashes and brows has really made my life a WHOLE lot easier - it eases and lifts my "self" beyond explanation.  Hubby, who takes me there and then runs errands for me between checks as to how I'm doing, doesn't understand why all this makes me feel so much better.  However, he can SEE what it does for my spirit and thus loves the whole adventure - certainly more than I do - and actually gets excited about it all, despite my acting like a grinch the whole way there.  Did I mention that irritating hubby is also the sweetest, albeit delusional, hubby ever?

Back to Lan: at least after she's done with me I have an idea as to where to go to fill in those brows with brow powder and can find my lashes to put mascara on...otherwise all is invisible or non-existent.  And since my eyes are so dry, I can actually get away without the mascara if need be and not scare any children who may cross my path.

Finally, going to the beauty farm is not an easy deal:

First, I have to feel well enough to get out of bed, bathe, put on some makeup, see how awful my hair is and SORT of fix it and then find something (other than a nightgown) to wear which fits my ever-changing body. This is major league for me.  By the time all this is done, because of the sweating, trembling, shaking, almost-passing-out factor, you can imagine me employing the "up, rest; up, rest; up, rest" method forced on me by my cruddy body.  This takes at least two to three hours to get through.  Come on CFIDS'ers, CFS/ME'er's and Fibro's, admit how hard it is to start your life each day, but especially when going out of the house!  And though we all have many of the same problems, we all manage to have different problems also, and so in the end, it's never an easy task.

Furthermore, there's that funny little annoying problem I have with sleep - the BANE of my existence.  My life has no pattern nor any predictability or reliability at all because of the sleep factor.  I never know WHEN I'll fall asleep, IF I'll fall asleep at all, for how long WILL I sleep?  And if I do happen to fall asleep, will it be an hour before I have to get woken up for the "get ready to go routine"?  Am I going to be "sick" that day, as in I'm so sick that I can't stop falling or there are huge ulcers in my mouth or any number of conditions that keep me a hermit?  I absolutely hate it when hubby sees me in the morning and the truth hits me as I see a certain expression on his face: I will not be able to go under any circumstances, I'm just doing that badly that day...no adrenaline will help, no painkillers. After so many years, he, as well as my kids, can read the signs, among them the blue or no-color lips.

People always say to CFIDS'ers, "but you don't look sick!"  We absolutely, positively and indubitably cannot stand those words.  We're sensitive about people believing us, so we all too often feel those words undermine our illness.  Furthermore, it IS an insult because we know that we happen to look like something you stepped into by accident in a cow pasture. We look horrid despite the makeup...often worse than at home without makeup, because we usually look like a marathon runner does at the end of a 25K race - not only are we all sweaty and clammy, but our hair is absolutely wet, precisely because it IS the equivalent of a 25K run for "us."  For you non-jocks out there, imagine how you'd feel after a marathon.  At the finish line line you'd be breathing hard, sweating, legs feeling like jell-o, nauseated and so forth.  That's just a bit of how I feel before I reach the front door to go out.  Now that I think about it, perhaps it's a good thing that we have an hour drive to the salon: it gives my body a chance to rest before the fun really begins!

And finally, you've spent the week before doing absolutely nothing, trying to built up what I call "health credits."  If you don't put away those books lying around your room, you get x amount of health credits.  If you stay away from the garden, if you refrain from taking a bath, washing your hair or your face but so many times in the week before (never in the week before, if I'm being honest about it), you earn another unknown amount of health credits. You're constantly thinking about those darn health credits - or being reminded of them by a family member should you forget - in everything you do.  Normally, I rarely go downstairs to the kitchen, living room, etc., areas, but the week before a doctor's appointment or a beauty adventure, I absolutely NEVER go down there.  I need to save up those health credits.

I'm excited but scared....each and every time.

So, until Saturday, I'm living on tethers, hoping against hope that this week I WILL make it to my hair and beauty appointments.  I'm eating as healthy as I can, trying not to allow anything upset me (ha!), focusing on the positives (sorry, but another ha!), saving up as many health credits as I can and using any other of the other weapons in my arsenal of getting out of the house for the day.

Hopefully, the team can make me look Bea-U-ti-ful! ;)


Sunday, March 25, 2012

Spring and the CFIDS "on/off" Phenomenon...

Our baby weeping cherry tree made it through the non-winter.

It's spring and that alone puts me into the best of moods.  My legs are killing me and I am thrilled about it!  Why?  Well, this past week I made myself run out (metaphorically speaking, of course - I actually practically crawled down the stairs) to take a few pictures with my iPod of the bulbs coming up.  Oh what freedom!!!  I've not been out of the house for weeks - months even, canceling doctors' appointments right and left - and then worried I'll be dropped by my doctors for being so "irresponsible and/or for wreaking havoc on their schedules.

It had to have been funny for any neighbors looking out and seeing me getting down on the ground for some close shots, in something looking suspiciously close to a nightgown.   Actually, it must have been interesting to see me at all. I am the "phantom neighbor," sort of like during my kids' high school years, by which time this horrid illness had become so severe that I became the "phantom mom."  There were rumors that I existed but no one was REALLY sure.

Anyway, the next day after my "photography" adventure, I happened to glance out the window (I should try to do that more often) and noticed that the trees were in bloom and hoped against hope I'd be able to "run out" again for ten minutes within the next day or so, before all the blossoms disappeared.  Three days later, I was ever so pleased with myself because I was able to do so and even stick to my strict limit of ten minutes and no more.

And wouldn't you know it, but just as I laid down on the ground, hubby dearest arrived home - in the middle of the day, for just long enough to cut the grass and run back to work. This NEVER happens!  I was, simply put, BUSTED!   Fortunately, my red face made hubby refrain from lecturing, though since then every once in a while he mutters "ten minutes, huh?" -  just loud enough for me to hear.

My family laughs that my life is either "off" or "on," with no in between and I'm beginning to see that they are right.   "On" means going on for hours, though it rarely happens anymore.   But there are at least two reasons for this "on/off" phenomenon.

First, it is really hard to change gears with this DD, CFIDS, CFS, ME and/or fibromyalgia with all its complications including migraines, SEVERE insomnia, nausea, eye vision problems, falling down, ulcers in the mouth which often make it impossible to even swallow water, speech impairment, memory loss that is more like amnesia than just bad memory, swollen lumpy nodes.  When you are finally well enough - angels singing Hallelujah! - to take a bath you then stay in way too long and pay for that for the next few weeks - if you're lucky.  When you're lucky enough to start to wash your face you start with soap, then a cleanser, then an exfoliant, then throw in a facial mask treatment for good measure and keep going because who knows when you'll be able to wash your face again?  You start a book and just can't put it down - because you can't change gears and because tomorrow you won't remember anything read the day before.  You play a mind game and force yourself to dust and declutter your nightstand and soon you're dusting everything in sight.  Your adrenaline has kicked in to assist the painkillers and if they happen to FINALLY work and vertigo doesn't start in, nausea, along with a dozen other possibilities, you become unstoppable.

Your cautious, "know-it-all" mind tells you to stop because IT knows perfectly well the price that will be paid, but your brain is damaged and can't turn off. If someone interrupts,something weird happens to your head, your blood sugar, your momentum and you are startled so badly that a migraine starts. The crazy list goes on and on, of examples and consequences.

Secondly, I've learned that pacing myself simply doesn't work - for me, that is.   Everyone is different.  It really doesn't matter if I spend five minutes doing something or five hours doing something - the end result is the same - and that is, that you'll always be in worse shape the next day or the third day after, for however long the fates have slated, I suppose.  That is why I so often go "all out" if I can manage to drag my body out of bed. And as long as I'm not standing still (because my BP plummets even lower and very quickly) but moving or sitting down on a stool I keep inching along - I become the Tasmanian devil.

I rarely disclose any of this because...drum roll, please...I am sick and tired of the "advice" I get from people who really have no clue, including doctors, about how I need to learn to pace myself, or I must make an effort to push myself,or I must learn how to NOT push myself, etc.  I rarely hear what I need to hear, what pretty much all of us need to hear: listen to your body and LEARN FROM YOUR BODY what's best for you.

So, getting back to my capturing pictures of my garden, I did the mature thing and took 10 minutes worth, washed off and got back into bed.

But now I'm too exhausted and in too much fibro pain, shaking, fighting off a migraine, with blues that are felt down to my very ankles from the awfulness I feel, unable to understand the simple concept of even how to wash my hands with Dove, much less wash my face. There are other symptoms which I'm not really registering, being so good about denial.  Pain killers are no help.  This is disheartening because washing my face at least once a day is one of my New Year's resolutions and I'm doing the best I've done in at least 15 years.  I'm ticked off that I didn't work out there until I dropped.   At least something would gotten accomplished - more than neighbors seeing the mystery woman ambulances appear for every once in a while. (LOL!??)

However, now my thighs are killing me too and I'm LOVING that!  This is the thing to have happened to me in ages:  the wonderful hurt a normal person gets after a period of slacking off and then doing a good work-out. It hurts but it's the "good" kind of hurt that I remember from 37 years ago, which so rarely happens anymore.  And who knows...I might even be able to add riding on my exercise bike for two minutes every few days soon.  I've still not given up my dream of going back to taking very elementary horseback riding lessons, though I fear I've jinxed myself by revealing that dream here. (And yes, of course I've knocked on wood and done the "Tphoo! Tphoo! Tphoo!" bit. I'm a supertitious Russian/Ukie by blood after all!)   But I am definitely going to TRY to keep up my attempt to record my garden's progression.   We all do so much better when pretty things surround us and we all feel much better when we see that we've actually achieved or accomplished something, be we sick OR healthy.  I know, clichés, but true and very well worth keeping in mind.

Happy Spring, everyone,
Upa (aka "Ира")


Thursday, March 22, 2012

Crying from my sickbed about another senseless CFIDS death....

Today I'm mourning the death of yet another victim of this monstrous and all too often fatal "syndrome" which too many doctors, health professionals and even friends and family are simply ignoring and/or, perhaps worse, refusing to believe in.  I did not intend to make this blog a place for downright preaching, perhaps because it turns so many people off of a topic that is often way too hard to stomach, and most definitely hard to understand and believe.  Today I'm crying because I've just learned about the death of a young woman whom I never knew, never even knew she existed, but have since learned how much she was able to accomplish in her short and tortured life: and make no mistake, she, as well as well as thousands, some suspect millions, are living a life of torture, for that IS what CFIDS/CFS/ME/Fibro is, "TORTURE." And yet she managed to somehow accomplish so very much in her short life, volunteering from her sickbed for the youth who have this illness as well as writing a guide to this illness for sufferers, a book which was well-received.  

After crying earlier in the day, I got angry.  I'm angry that this illness is still marginalized and I'm angry that funding is barely available for research and that the allocated funds in the past have also been "misdirected" to other places and mired in scandal.  It is disgusting.  Period.  Criminal.  Period.  Immoral.  Period.  Tragic.

Emily's family asked that the last letter she typed into her smartphone over a period of weeks when she still had strength be posted by anyone who cares about this illness.  Her words are so eloquent that I am proud to be able to place them here on my blog.  I am sorry for those of you who are uncomfortable with the "dirty" part of this illness, but this is one day that simply cannot be left to laughter.  

For those who would like to learn more about this brilliant young woman, the link I have here should give you more information:  
http://www.meassociation.org.uk/?p=10880

And now for Emily's so eloquent appeal:

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. 

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. 

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly. 

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison. 

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate. 

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. 

Many days I feel utter despair. 

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. 

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. 

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others: 

Please put an end to the abandonment of people with severe ME and give us all real reason to hope." 


How many more deaths will it take before something is done about this "syndrome?" Too many have already died and yet it continues... Царство тебе небесное...may you rest in peace, Emily.  (1981-2012)

Wednesday, March 21, 2012

Finding needles in haystacks while dieting.

Eating my way through England in the late '80's.


If ever any of my three (charming) kids to look at this post, a massive cry would arise, I just know it.  You see, they already think that I'm an eating well/healthy eating crusader, as well as a believer that food will cure all. Well, I'm not - not really.

...Although there IS my constant threat/dream to start a demonstration in front of every supermarket in the US with young women, mothers, grandmothers of the world united, carrying placards that declared that 95% of the food in said stores is dangerous to our health.  Hugely dangerous!  But I'm coming perilously close to digressing, and that's for another post, so on with it!  

I'm always amazed at how much healthier I feel after I've been eating well.  Actually, perhaps not "healthy," but instead how much cruddier I feel after eating "well" for a while, then sneaking in one of my "forbidden" foods and suddenly feeling incredibly worse...migraines, brain fog, huge pain, and the myriad of other symptoms and problems which then come out in spades and/or are intensified.  

I suppose the first time I really and truly noticed this was back in the early '90's.  I'd gone on a diet determined to lose the fat and poundage I'd put on after seeing a CFIDS specialist (one of a few already and one of many to come) who thought regular steroids would be the answer.  I'd made peace with the decision and since I was already bathed, dressed, made up and out of bed, hubby and I decided to stop by a department store on our trip home in order to buy some clothes that would fit me once I put on the inevitable at-the-very-least 20-pound weight gain I have always gotten from just one shot of steroids, as in the occasional bout with poison ivy or other nasty thing deserving steroids.  

Well, to make a long story short, my CFIDS, ME/CFS, fibromyalgia, migraines, insomnia, and so forth, symptoms got no better.  In fact, I would say that they got much worse.  And I did not have a 20-pound gain but a 40-plus pound weight gain.  Putting on all that weigh made it even harder to move around, the pain got much worse.  The migraines were so bad, in fact, that I was in the ER just about every week.  

In those days, the "best" treatment for migraines was a DHE-45 IV drip in the ER which took a couple of hours to administer.  It worked like a charm but was a pain because I have a phobia of needles and a good "stick" is hard to find.  But the ER docs got to the point where they could take one look at me, talk to hubby and immediately see if a quick Demerol shot would work or if I needed the dreaded DHE-45 infusion.  

I thought my migraines would be a cinch to deal with once Imitrex came out, in shot form.  Holy cow, was I ever wrong.  The migraine would go into stratospheric heights and knowing I sounded very crazy I nevertheless couldn't stop screaming from the worsening migraine that the Imitrex induced.  Then after about 6-8 hours, if I were lucky, the migraine would magically go away.  Too often, however, the migraine did not go away and I'd need a second shot, screaming, sweating, shaking, trembling...it was a sight out of "The Exorcist," minus the head turning. 

Back in the late '80's, the migraines had become so bad that my first lumbar puncture was done.  When elevated proteins were found in my spinal fluid, everyone scrambled about getting me scheduled for a CT scan, others were trying to figure out who would be doing a removal of my brain tumor because that's what an elevated protein level in the spinal fluid meant back then, whereas hubby worried how he'd miss his young wife and how he'd manage life with three little children who had no mother.  It was a scary 24 hours until everyone found out that there was, indeed, no tumor in my brain.  

On the other hand, when I was lucid enough to think, I was furious with everyone. I didn't have a diagnosis yet as to what was wrong with me, but I KNEW that something serious was going on.  How was it, I wondered, that the elevated spinal fluid would scare the heck out of doctors one day and not be a sign of anything wrong the next? Come on guys, use the brain God gave you, the logic college taught you, and the physician's training medical school gave you.  There IS some sort of problem.  It's not just a yes or a no!  

But everyone was happy, other than me, of course.  That was the infamous year when I spent more days in the hospital than at home, popping in and out of hospitals as if they were my home away from home.  Hospital dietitians particularly got on my nerves because they kept trying to trick me into diets I'd long ago surmised did not influence my health.  I'm sure there are exceptions to the rule, but one the whole, I've found that most hospital dietitians are the most ignorant group on God's good earth when it comes to food.  Think about hospital food for a moment and you'll understand what I mean.  

At any rate, getting back to the steroid fiasco, I stopped the shots and was determined to lose the 40 pounds I'd put on, not an easy feat.  For some reason, regular weight goes off rather well with determination, but steroid weight gain is almost an impossibility to get off.  It takes me at least a couple of YEARS to budge even 20 pounds.

But I heard about a new diet on one of those evening magazine shows and decided I had nothing to lose but weight, so why not try it?  

It was called "The Monignac Diet," "invented" by a Frenchman who worked in the US for an extended period of time, had a history of extra poundage he wanted to lose, and was horrified by French young ladies who spent time in the US and came home fat.  Nutritionists and dietitians around the world were divided on the efficacy of the diet, most very much against this new-fangled concept of a glycemic index, but given my opinion of nutritionists and dietitians, I thought that was reason enough to try it.  

The diet basically divided meals into ones which were fat/protein or carbs.  Never could the two groups meet. Furthermore, carbs were divided into "good" carbs and "bad" carbs.  There were also some "no-no's," such as sugar, corn products, potatoes (a killer for me since I consider potatoes "Russian/Ukrainian penicillin").  This is all a simplistic explanation, of course.  This was also my first venture into the low-glycemic world.  In fact, Montignac is now, after his death, known as the "father" of the glycemic approach to diet, eating, weight gain/loss, health and so forth.

Well, it was a surprisingly easy diet to stay on.  I lost 20 pounds but then hit a plateau - a plateau I could not for the life of me get myself off of.  

One night, complaining about the darn plateau, observant hubby suddenly said, "you know, you haven't had a migraine since you started that French diet."  I looked at him as if he'd suddenly grown a monstrous second head but I often give him that sort of look.  

"Think about it," he said.  This time he got a dirty look.  One of my hobbies is thinking...was he actually telling me to think when he's always telling me to think LESS???

Suddenly I jumped out of bed and ran to the dresser where we kept all of my migraine meds, including the dreaded needles.  My supply of needles looked full.  I checked the date on the Imitrex - and it was expired.  WAY expired!  I looked at the rest of my migraine arsenal and everything was old. 

This was way too easy.  Hubby said, "I think you may have lost only 20 pounds but more importantly, you lost your migraines too."  That was such a corny statement that he got another, deserved, "look" from me.

Not wanting to leave things well enough alone and being a contrarian, or just a person who likes proof, I looked at him devilishly and said, "I want a burger."  You see, bread, a carb, and beef, fat/protein, mixed together were a definite no-no.  Hubby looked at me as if I were nuts but knew arguing would do no good.  I finally ate my hamburger with extreme relish and got my migraine, in spades.  Too bad I hadn't planned things out: the migraine was one of my better ones and because the meds at home were all expired, a run to the ER was needed.

It took me some time to accept the reality that I had hit a cure for my migraines.  This was really huge.  As a child I got bad headaches but my mom believed that children don't get headaches, they just caused them - in adults!  I learned great coping mechanisms, one of which was washing floors, de-waxing and waxing floors on my hands and knees whenever I had a "headache" coming on.  I didn't even realize I was doing this but always had incredibly sparkling floors. 

All of this denial came to an end, however, when I went blind in one eye for a few days while in my second pregnancy. It was a migraine equivalent seen at times with women who suffer severe migraines.  I argued with my neuro-opthomologist that I don't even get mild headaches when my hubby came out a state of shock and said, "You ALWAYS get headaches!" Was I complaining but not hearing nor registering those complaints? 

After challenging the "French Diet" a few times, I realized that for me, at least, this was one answer to my migraine problem.  I've had good years and bad years as to how well I stick to this way of eating.  At the moment I'm not doing too well because of too many reasons to bore you with at the moment.  

But how incredible was the luck that led us to this "cure"?  Had we not been using needles back then and had Imetrix not intensified my headaches before ridding me of them, the connection might not have been made. Today, with a medication in pill form that works like a charm, I'm not as invested about avoiding the foods and eating patterns that lead to a migraine.  Pop that pill and forget about what harm I may be causing myself due to side-effects not even yet imagined.  However, now that I've put this in writing and told so many about it, perhaps I've finally given myself the push I need to get back on the French diet band wagon.  

Goodbye to my wonderful potatoes, my wonderful Russian/Ukie cure-all for a while.  Perhaps I'll have some mashed ones tonight as a farewell, right before I have a piece of sugar-laden cake for my wonderful daughter's birthday.  It's tough to say goodbye to those "poisons."

Monday, March 19, 2012

About Fibro Brain...

Our first batch of hyacinths is making an appearance! 
Since we've had no winter this year, it seems that the beautiful bulbs my hubby and I planted will start coming up soon.  I've noticed others post lovely pictures of their flowers on their Facebook wall/albums, or on their blogs.  I thought I should give it a try because....

Well, first, let me back up here for a moment for the backstory.

I had ordered bulbs back in June/July for fall planting.  By ordering before a certain date you receive a huge discount (50%!) and I'm always up for that. My last massive planting was back in 1996, quite some time ago, I'd say.  Those bulbs lasted quite a while, though granted, each year we had fewer and fewer flowers coming up in the spring.  

Understand, our house needs some serious curb appeal since a contractor who took down our falling-apart front porch failed to ask me if I wanted to save any of some pretty wonderful landscaping I had. Oh, we needed some serious overhauling, and every one of the bushes was meant to be moved, but away, not forever.  I especially miss my white oak leaf hydrangeas which I'd planted as little more than twigs, well over fifteen years ago. Again I digress, but you get the idea. 

This year we had to do extensive remodeling (thankfully by another contractor) and since the work was and is still on-going, I thought bulbs would at least cheer up the front of the house - not to mention that they would delight our poor neighbors, I'm sure.

When I ordered the bulbs, however, I didn't take into account that my "gardening son," my "assistant," may very well be out of the country come bulb-planting season.  The bulbs were delivered to our doorstep by UPS in mid-September, but I put off planting them seemingly forever - thanks to the DD (code word for "Dreaded Disease," etc., if you recall).  But one day I bit the bullet, took up my gardening equipment which hubby had kindly put aside for me in a convenient spot, grabbed the bulbs and made my way to the front porch.  I wasn't exactly bouncing along, but at least I was up.  On the new porch, protected from the sun, I proceeded to line up the bulbs by color, type, height, growing time, color combinations.  It was truly a magnificent sight, all that coordination and organizing.  I was quite pleased with myself, I must admit.  I even took out a sketching pad and pencil and marked the places I'd put groups into and how many for each group, which would be in the front, which in circles, which scattered and naturalized - again, you get the picture.

That day, after about fifty bulbs, all my plans went kapooy!  Hubby came along and I snapped at him that I knew exactly what I was doing, thank you very much.  I noticed him grabbing a glimpse of me every thirty minutes or so, sure I was going to pass out before too long, or worse, fall and hurt myself and need a run to the ER for an X-ray....it's happened more than a few times before.  By nightfall, despite the many cold glasses of water I gulped down (to keep my blood pressure up), I was running out of steam and welcomed hubby's carefully worded offer to help clean up.  He looked at the bulbs still to planted and then at me and asked, "HOW many bulbs did you order?" Very matter-of-factly I answered, "oh, about a hundred and fifty."  Good thing I couldn't seen the eye roll because of the dark, otherwise, the MAN might've needed the ER.  (OK, I'm kidding about him and possibly needing an ER...somewhat!)

Well, the expected happened.  I paid for all my efforts the next day and the next and the next....  Can we all say, "post-exertional fatigue!", one of the hallmarks of this DD?  I could manage the pain this time, but the fatigue was now the real killer.  Hubby kept asking if he could help.  Through gritted teeth I kept informing him that I'd get out there and do it myself, thank you very much.

To make a long story short, a few weeks later hubby ended up planting the rest of the bulbs himself.  He planted another hundred and didn't make a dent.  Each day he'd rush home from work to plant as many as he could before the sun went down.  For the first time in my life, winter hours were my enemy and I wanted Daylight Savings Time with its extra hour of light - a definite sign of my desperation.  We kept trying to figure out new areas to plant the bulbs because the darned bulbs seemed to be mysteriously mutating and procreating.  Hubby started to use flashlights strategically placed around himself and any particular flowerbed he was working on.  We got to the point where it didn't even matter WHERE those bulbs would go.  We just wanted those suckers in the ground!  Eventually we tallied up each bag and how many were in each one.  It turned out that there were over five hundred bulbs, all for a lot not much bigger than a postage stamp.

The moral of the story: CFIDers and those with Fibro can't count nor should they be believed that they can overcome all obstacles.  We may think we can, even truly believe so, but nothing is further from the truth...we are all too often in serious denial, thinking we can do what we did before we became ill.

People, please take note.  I'll be discussing this further once I can get my wording correct, but there's a point I'd like to bring up at this point.

There IS a difference between depression and fibromyalgia, with depression on the one hand and CFIDS and Fibro on the other, contrary to what all too many doctors, as well as crazy psychiatrists and psychologists, seem to believe.  With depression people feel as if they can't do anything, they can't even begin anything, all because of the feelings of desperation, uselessness, and being overwhelmed. With CFIDS/CFS/ME and Fibro, on the other hand, we  all too often think we can do, as I said before, whatever we could do before we became ill.  When we can't do something despite every effort, we get angry, we cry, and/or become upset, a normal reaction. 

Now that's a HUGE difference, one to explore for another time.

In the meanwhile, I can't wait to see what kind of mishmash comes up this year in our garden.  Should be interesting!

Saturday, March 17, 2012

Answers Found in the Oddest Ways

The Original Clarence


Just after Thanksgiving, I had a freak accident which resulted in two surgeries for acute compartment syndrome and me almost losing my arm and hand, and indeed my life.  I'm still not completely sure what happened - though I DO know that it had to do with complications due to the CFIDS/ME/CFS and fibromyalgia - since  hubby and my daughter have found it almost impossible to discuss, much less fill in the blanks.

The first memory I have of the whole incident is well into the second week of December, though I'm told I wouldn't stop talking, and evidently spent a lot of time speaking in French, of all things - a language I don't even know, other than the tiny bit recalled from high school, eons ago - and when I still had a functioning brain.  Even back then I was not the most talented in my attempts at the language.

Over the last few years, I've often thought that my guardian angel needs a name, especially after so many near-misses with me, but this incident took the cake.  So he's now called "Clarence," the name of the angel-in-training in "It's a Wonderful Life."  Coincidence?  I'm not sure, but "Clarence" it is. This near-death experience included near-kidney failure, fluid around all of my organs, near pancreatitis (jury's still out on that one) and a 50-lb weight gain within just a few days from the massive fast-flowing IV's and numerous other complications of which I'm blissfully unaware. I ended up looking remarkedly like the Pillsbury Doughboy and moving about as successfully as the poor tyke.  Luckily things started to turn around once they gave me a couple of blood transfusions, something I really didn't particularly want since I had a near-death experience with that back in '79. But there was no choice, really. The timing was right for oh so many things, a sort of "perfect storm."

I'd had the flu since before the darn accident and though I normally run a fever a couple of times a day, this was way beyond even MY norm. At one point, out of desperation, I started squirting water on my face. Yes, I know there are those who make fun of paying good money for water-in-a-can but pouring water in a plastic bottle with no aerosol accomplishes nothing and since I really have so little carbon foot printing, I figured, I'm due a few points.

I had a few days when my eyes burned a lot and suddenly I realized it had been ages since my eyes were even mildly dry.  I couldn't figure out the reason, but I was happy since no amount of eye drops have ever helped.  My (old) eye doctor could never understand it and kept giving me tips, none of which worked, frustrating all.   I became almost an obsession, each doctor getting hung up on this tiny piece of minutiae in the grand scheme of things. I actually thought about trying the eye drops advertised on TV, usually during the evening news, but thought that the woman had really weird eyes...no thank you, I have enough problems.

But today I saw another person on that commercial and backed up my TV to hear her spiel. Well, actually I wanted to see how crazy HER eyes looked.  I'd hoped they'd tweaked the formula.  As I listened to the woman doctor talking, I heard a word which went "Ping!" in my brain.  She talked about the inflammatory process of the eye and why the eyes can become so dry.

BINGO!  I'd been describing my eyes as hard as marbles, which no amount of drops could penetrate. Well, that's what this product is, an anti-inflammatory going right to the spot.

I've been on an anti-inflammatory since my compartment syndrome surgeries. And all this time I've been forcing myself to drink a good amount of water, down from the usual gallon or more a day I normally crave, which drives hubby up the proverbial wall, with him "threatening" to set up a faucet above my bed. 
What kind of CFIDS'er and Fibro was I?  We all seem to walk around carrying water.  In the beginning, CFIDS and Fibro docs caught on quickly that those patients holding onto their water bottles for dear life were the ones who had CFIDS and/or fibro. They knew our diagnoses before even talking to us as they noticed our red eyes (from dryness), along with chapped lips, and the inside of our mouths sticking to our teeth, making any discussion that much harder.

In other words, my eyes were inflamed to the point where no amount of drops put into them could penetrate and do any good. The same with the dry mouth - so inflamed that the thirst was never quenched.  Now with the anti-inflammatory, it appears that the moisture is getting through. The red eyes seem to be disappearing. Lip balm is actually working. 

Yee-ha!  So, one puzzle out of how many hundreds has been answered?  Clarence, you old rascal, you did GOOD! ;)  Bring on that mascara!

Thursday, March 15, 2012

How do baby-boomers find fashion and beauty on line?


So, I'm over fifty and because I'm basically glued to this bed 24/7, I need to 
do whatever shopping hubby dearest can't do himself, on-line.  Thank goodness we 
now DO have that option.  I often think that these on-line stores could very 
well go out of business were people like me (us?) to stop ordering from them - 
the people who are just too ill to shop.

I have my books covered, drugstore needs, even "beauty" needs, thanks to 
drugstore.com, beauty. com, Sephora.  I can even keep up with any fancy-shmancy 
cooking, baking and dining needs when I add in Williams Sonoma and King Arthur's 
Flour, both on-line.

But the clothing situation is still a huge mystery and a way-too-expensive 
proposition.  

First of all, I think all of us who are over fifty have a bit of of a problem 
finding fashions which are just right.  The market seems to cater to those who 
are youngsters, a look that is pitiful on those of us who are, ahem, shall I use 
that word yet again, "mature"?  But "mature" doesn't mean "dowdy," and that's 
the look I often find...things my 80+ year old mom would wear - on a very bad 
day.

This is a situation that is particularly frustrating to the over-fifty crowd 
because we were spoiled all of our lives: we were the baby boomers and thus the 
demographic that the marketing world wanted ever so much.  No matter what our 
age was - be it fifteen and Noxema, nineteen and being revolutionary with 
pantsuits, thirty and disposable diapers for our babies, fifty and luxury cars - 
our buying habits, budgets and dollars were catered to.

I even thought that the trend to coddle to us would last well into our eighty's.  
How often have hubby and I looked at each other after a commercial and burst out 
laughing saying, "God, but it's good to be a baby-boomer...they just never stop 
trying to get our dollar!"

But it looks as if that ship has sailed, somewhat.  The beauty industry still 
wants us, as is evidenced by all the anti-aging and firming products out there.  
The pharms want us as is evidenced by all medication such as once-a-month 
calcium, cholesterol-lowering drugs, as well as the happy-in-bed market I won't 
name here.  

But the only industry that seems to have really given up on us is the fashion 
industry.  Look at the shoes alone.  The platform shoes out there today aren't 
really platform...they are simply a westernized version of the era in China when 
women were not meant to walk at all, just hobble along for a few steps.  

How crazy is it that the shoes of today have become so unnatural that there are 
places on YouTube that actually teach you how to walk in these crazy shoes?  I 
mean, hey, I'm all for high heels and suffering for beauty in general.  On the 
night of that infamous blind date with hubby, I came down with 13 blisters - 
yes, 13! I counted!  - because of my sexy brand new high-heeled sandals and 
future hubby's desire to find a certain restaurant in the Village, the only one 
where my friend could eat due to religious dietary restrictions.  We walked all 
over the place trying to find that tiny inconspicuous place. Well, I hobbled.  A 
month into our "courtship" I was finally dragged by future hubby to go shopping 
with him for my first pair of flat shoes since about the age of 16 when I 
received my learner's permit and no longer needed to walk.  But New York City: 
eek!  They walk!  

The fashions today?  I keep thinking they are very similar to the ones of the 
80's, the era before the football player size shoulder pads, an era when no one 
could get a handle on what was going on.  And how many dresses or looks today 
won't even allow a bra?  The fashion editor who guides the designers on "Project 
Runway: All Stars" finally got fed up last week when Michael's latest creation 
was yet another design which only lovely, young and very thin models could wear, 
not real women who actually buy said fashion. No bra?  It's a sorry sight for 
most women, much less those over 50.  Ouch!  Those dresses with the cinched 
waist and full skirt?  Uh, if you're into "I Love Lucy Shows," or worse Minnie 
Mouse.  Besides, the suggestion/advice is that if it was in style when you were 
young and it's now on its second time around, please do not buy that style...it 
won't suit!

I've shopped at Eddie Bauer, and Old Navy/Gap/Banana Republic.  They're good for 
some looks.  I've shopped on-line at Nordstrom and not been too overly happy.  
Most has to be returned and then you end up messing up your credit card balances 
with the returns that take forever with the credit card companies.   Everything 
is either too young or too old.  I've searched the Internet for fashion for 
women over fifty and am not getting good results.  Heck, even the couple of 
times I've been in a store in person at Macy's or Saks, I've had to dig to find 
anything suitable and usually end up buying something only out of desperation 
and not because I've fallen in love with said garment.  

Of course, why would I need clothes when I basically live only in long cotton 
nightgowns?  Well, a girl has to have something to wear to see her doctor or get 
her hair cut every few months.  I still have SOME standards.

Any suggestions for on-line shopping for the over-fifty's?  Let me know!  It's 
getting a bit tough to laugh about anything as serious as fashion. ;)

Monday, March 12, 2012

The THING About Waiting Rooms...

Legs in training....

Since I promised to bring survival tips for my hoped-for readers, here's one 
that may appear to be a bit unorthodox but a real winner for me.

Anyone with any sort of chronic illness is very susceptible to germs and viruses 
from everywhere.  Obviously.  Duh!   With CFIDS/CFS/ME, our immune systems are 
hinky, thus the "ID" in CFIDS, the "Immune Dysfunction" syndrome part.  Our 
immune systems are over-active and under-active, both at the same time, so very 
contradictory in an illness full of contradictions.

I need to meet about every month or so with my long-suffering GP, who of 
everyone I've ever seen in my plethora of doctors over the past 37 years, from 
New York City across the good old USA, has been the best and most successful 
help in my care.  We make a good team, actually, as we've together tackled 
research and question seemingly everything that comes our way.  Some years we're 
gung-ho about learning every new thing, other years we just throw up our hands, 
give up and go into survival mode.  A small-town GP, he's more than a bit 
understanding and has more patience than I could ever dredge up, which is not to 
say we agree on all, but just that he's one of the best things that's ever 
happened to me.  Oh, he does sometimes see me as a bit of sport and I just know 
the man often revs me up to hear what will come out of my mouth next.  But 
compassion when need be, it's there!

However, I hate the germs and viruses that I seem to bring home each and every 
time I see him...or my dentist for that matter.  With my dentist we've agreed 
any work that needs to be done can start around April, once flu season is over, 
but must end by September, before flu season begins.  And the best part, 
perhaps, is that he's enforced these parameters at times when I've thought to 
myself, "flu season be darned," crazily thinking I was just too careful.

I can't exactly not see my GP, however, for so long.  So after many years, which 
included two serious bouts of pneumonia, we've worked out a system that seems to 
be the answer to some of the problems of my funky immune system.  My 
long-suffering hubby goes to the office, as I stay behind in the car with a book 
or my Kindle, signs me in, takes care of whatever finances need to be addressed 
and actually SITS in the waiting room for the moment when my name is called.  He 
then quickly runs out to the car and we go in through a back door, thus avoiding 
as many sneezing and coughing people as possible.

How I wish we had some sort of system like that when the kids were little and 
you'd take your children in for a "well visit," only to bring home three kids 
laden with chicken pox or some of the other childhood illnesses lurking in the 
pediatrician's office!  But I digress....

To tell you the truth I am always tempted to take some sort of germ-killer in a 
can and spray it at all within my reach.  Despite many outrageous things I HAVE 
tried, Lycol'ing my way to an exam room is even too much for me, SO FAR.

Yes, I may sound like a diva, but here is an example of why this has become a 
necessity.  I came down with a common bug going around one winter and was sick 
as a dog for two solid years.  Just as I was in the home stretch something 
strange happened to my legs...they turned blotchy and mottled with lovely shades 
of purple and red.  They've stayed that way for the most part, unfortunately.  
They are of huge interest to my doctors...they seem to love looking at them and 
speculating as to how the heck THAT happened.  I'm not so easily amused.  And 
poor hubby - my legs were what he'd first fallen in love with, only later my 
sparkling personality!  <wink!>

So, if your immune system is really wacko and you know that a needed or required 
visit to your physician may cause you to come down with everything down to the 
seven plagues of Egypt, consider my strategy.  Granted, it may be difficult to find 
someone in your life who's willing to sit in a waiting room full of sniffles and 
sneezes but it's a heck of a lot harder to come down with a bug that can take 
months and months to rid yourself of.  Plus I find that with each "flare," we do 
get more permanent damage to our bodies.  Ask my legs.

Sunday, March 11, 2012

Laughing from my sickbed about my profile....


One  bad day in the mid-80's: hubby's idea of lightening the mood, a gorilla-gram!  I love that I have a bracelet on even when sick.

If I had any idea whatsoever as to what the profile questions were about, I'd 
answer them, no problem!   I really don't mean to sound mysterious.

I'm a wife, a mom and, I hope, a good friend.  My "long-suffering" hubby and I 
have known each other for 37 years, meeting on, of all things, a blind date and 
falling in love at, just about, first sight.  My first reaction upon seeing the 
tall guy in front of me?  "S*^t!  THIS is what I've been waiting for all my 
life?" and proceeding to answer no more than "yes" and "no" for the entire 
evening.  We've been married for 36 years and have three fantastic kids, who 
love their mom and dad's story of how they met and tell everyone about it.  My 
best friend of all time and I have been BFF's for an unbelievable 41 years.  

For a long time I had no idea what the heck was "wrong" with me.  We kept making 
excuses for my seemingly sudden fatigue and brain fog and a host of other 
problems that were added to my "what's wrong with me?" list as the years went 
by.  Eventually, about fifteen years later, I was diagnosed with Chronic Fatigue 
Immune Dysfunction Syndrome (CFIDS) from a severe flu I got in grad school in 
1975, commonly known as Chronic Fatigue Syndrome (CFS), a term my fellow 
sufferers and I detest.  If anything, I prefer the British name for it, Myalgic 
Encephalopathy (ME).  The British ME shows that in England, at least, as well as 
Australia, they take this illness more seriously than we Americans do.

Over the years as I've become more and more sick I've worked hard on trying new 
tricks and ways of surviving this illness.  I've been extremely lucky in that my 
hubby and kids have been so supportive of me over the years - and fierce in 
their own fights to help make my life a bit easier to survive.  

But most of all, the thing that has helped our family stay together and fight 
this beast is our gift of laughter.  And it truly IS a gift.  We've had our 
"challenging" periods and were it not for laughter I just know we would not have 
survived this DD ("dreaded disease, "darn disease," etc., you get the drift).  

I have no idea if anyone is actually reading this blog.  It often feels a bit 
like when I catch myself talking to myself - a genetic thing, I tell myself, 
because I do remember my grandmother doing so!  But I certainly hope I develop a bit 
of a following because over these past 37 years I've been able to come up with 
various coping techniques and tips that may help those with CFIDS, Fibromyalgia, 
insomnia, and, indeed, anyone who suffers from chronic illness, be they totally 
bedridden, as basically I am now, or still struggling to hold down a job, or at 
least some semblance of a social life.  

So glad if you've been able to drop in and spend a bit of your time with me.  
Please leave comments if you're at all inclined to do so and/or subscribe.  I 
will answer any questions you may pose and will enjoy hearing from just about 
anyone...it'll be nice if and when I'm no longer talking to myself.