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, 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.

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