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, September 19, 2012

You CAN Tell A Book By Its Cover Sometimes...

I often think that people still wonder why in the world do I do so many articles on beauty, be it skincare or makeup, when I'm supposedly a blogger who is writing about CFIDS/ME/fibromyalgia and the myriad of problems that accompany these core illnesses. You'd actually be surprised at how often I wonder also.

I'm sure I have at least another hundred reasons and examples, but I thought I'd mention a couple today, even though I've "gone here" before (one example).  I'll only cover one or two others today in order to keep this post from getting ridiculously long - I'm really working hard on that!  (Huge sigh of relief from my faithful readers: I heard that!)

Those of you who've been following this blog are also probably aware (ad nauseam) of what happened to my daughter just two years ago: that she suddenly came down with some sort of never-seen-before vicious hybrid of Crohn's Disease and ulcerative colitis and within four weeks of going to her first ER visit and hospitalization had lost 45 pounds. She had been hospitalized five times at three different hospitals and during her second hospitalization at one of America's best medical centers for this problem her colon perforated.  She needed emergency surgery ASAP.  And this was just the beginning of her problems. (Some of it can be read here.) 

With each doctor she saw (and there were literally hundreds in the almost two-year history) I was constantly asked her medical history because my daughter was in howling pain, too out of it to understand what was going on around her, not able to swallow saliva, much less water or ice cubes.  They asked and re-asked, repeatedly, about her family history. They kept DISBELIEVING my husband and myself when we would say that we had no history of Crohn's or ulcerative colitis in either of our family histories, absolutely convinced we were lying or not seeing something.  They were so sure that Crohn's and ulcerative colitis were hereditary, though these diseases are woefully not understood and there are only lots of "trends" that are seen and heredity happened to be this particular medical center's "hang-up," trying to fit square pegs into round holes, if you'll excuse the pun.  I wanted to "smack them upside the head" at times, as some of the locals around here often say, hoping in vain that that would put some sense into them but refrained, thinking of the beloved nuns who'd not agree with St. Peter if they saw him let me through those Pearly Gates one day!  I did disclose that I had been hospitalized once for colitis in 1975 as a result of the antibiotic use during the flu that led to my CFIDS/ME and fibromyalgia, along with IBS.  But Irritable Bowel Syndrome is NOT Inflammatory Bowel Disease, a big distinction.  They were just so convinced that their "theory" that Crohn's/UC is hereditary, though really, no one actually knows where it comes from, nor why, at the end of the day.  It was simply maddening.

But what I found really interesting yet really frightening (another one of those understatements I tend to make) is the thing that I noticed about six months before my daughter got sick.  It involved her beautiful green eyes.

Let me back up for a moment.  I had the good fortune to be under an elderly doctor's care at a holistic clinic for about a year back in 1997.  He'd been running the clinic for about 50 years - yes!!  50 years!  And what was his main interest and that of the patients he saw?  CFIDS/ME/fibro!!!!  Yes!  Amazing!  He had patients flying in from all over the country to see this old man and the various practitioners he had working under him.

One of the things that this elderly (ancient) physician believed very strongly in was iridology and also looking at a patient's skin tone, the color, the pallor, the patient's gait - all the many bells that go off in a real physician's and healer's head like a computer that has not yet been invented, which registers everything that is right about a patient and what is wrong with a patient.  Given that my mom was always a bit of a health nut herself, when America was interested more in martini's than in carrot juice, I was familiar and even fascinated by this old doctor.  Here was a doctor who was spitting back things to me that my mom had been espousing all my life, and I had rejected them not only because it came from my mother, but because it was from my Russian mother and though she had had a degree in dentistry, it was not an American degree, but one from Europe, thus null in the US.

So about six months before the infamous frantic run to the ER and the resulting first hospitalization, I had noticed something that I suppressed for the first couple of months.  And how I do NOT do denial - it just takes up too much energy, something I, as a "spoonie" or one who is trying to build up "health credits" constantly,  am always trying to preserve and use judiciously.  

I had noticed that my daughter's beautiful green eyes were acquiring a translucent quality.  Whereas they had been a rich solid green before, they were now almost like see-through marbles.  After about two months I was starting to get obsessed about it in the strangest way and this was becoming just too much denial and I don't function well that way.  And yet here I was in heavy denial.  Finally I realized that I had to mention it to my hubby: after all, if anything was amiss, I'd never forgive myself for it and I knew that when (note, WHEN, not IF) the poop hit the fan, I wanted it on record that this was something I'd noticed before, that it hadn't been an "immediate problem," but something brewing.  Yet it took me a long time to work up my nerve because I was just that nervous about jinxing my precious "baby."  Her father took note but wasn't overly concerned.  I later noticed that she was sleeping a lot and that also give me the heebie jeebies, but it was the eyes that scared me the most.

Why the eyes?   Because, for the most part, eyes are no longer studied in a way that gives a doctor the whole picture of the patient.  Neither is the skin.  And yet both should be taken in as part of a patients' health, good or bad.  

Yes, the obvious signs in eyes are still looked for, the ones that can't be overlooked: the yellowing of the eye for jaundice, for example, or the signs of a concussion.  But think about it: those are just the first clues that then call for fancy testing.  But there are so many other things that are skipped.  I remember learning in Psych 101 that the dilation and contraction of the pupil could mean lying or an excited state, that Chinese jade merchants would look at the eyes to see if the customer is truly eager to acquire what he sees in front of him or not and whether haggling should continue or stop.  We parents were told to look at our kids' eyes for signs of drug or alcohol use.  But doctors?  Nah...forgetaboutit!

And we patients should be outraged about it.  Look at how a doctor barely touches us any longer.  I've been to dermatologists who have not touched my skin - afraid that my freckles might be catching?  I've been to a neurologist in the past year and a half who never touched my foot when I told him about my newly-developed neuropathy in order to ascertain if I did indeed have it and how extensive it is.  I've been to a famous CFIDS specialist who also claims to be a fibromyalgia specialist, who only touched 3 of the 18 tender points - and reluctantly at that!  

And now doctors and third party payers are evaluating patients by phone or computer?  Are they nuts????

When my daughter was moved out of the OR and into the Recovery Room, my hubby, the son with us and I were able to visit her for about five minutes, to be reassured that she had indeed made it through the surgery.  We had prepped our son by saying that she would look awful when he saw her.  After all, she'd just been through pretty serious surgery - panicked immediate surgery - and that she would look a bit banged up, the color of her skin would look awful, and so forth.  We felt we needed to warn him: he had been through more than enough already, having been there to help me cope with my daughter 24/7, running errands and seeing things no 30-year old young man should see in that medical center, the suffering not just of his sister, but of all those around us.  And he'd had to try to keep me calm until his dad drove like a bat out of h*ll from our home to the medical center, as I tried hard to keep up a calm exterior during said surgery, not very successfully, I might add.  

Instead, what we saw in the recovery room was a real revelation: my daughter's skin was almost pink and the eyes, which were rolling around a bit from the anesthesia, already looked better than they had in months.  I looked at my son and he looked at me and I could see him asking with his just barely-raised brows, "I thought you said she was going to look awful!"  Instead, she looked wonderful.  Not wonderful from a year ago, but wonderful for the last 6 weeks especially, and wonderful for the last six months for me.  The toxins and diseased colon had been removed.  Her color reflected her suddenly improving health - miraculously so.

So, this is yet another reason that we who have the invisible diseases also get a bit "upset," shall I say, when we are told, "you don't look sick."  Because really, we do.  We know in our hearts what we should look like and it isn't what we look like now.  Some of us can disguise it better than others and some of us are very good at it and some of us not so good at it.  But it really hurts that our doctors, who should know better, don't recognize the signs and instead rely on machines and tests.  

As long as they are able to get away with this, I fear that we will continue to get care that is less than what we deserve and we will continue to get thrown into that psychiatric wastebasket, a trend I painfully see coming back again, one I had hoped I'd never live to see again.

And on that cheerful note (!) I hope all are feeling their best, only better.  Ciao and paka!

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