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Dearest List members:

A number of you to whom I've spoken in the past are aware of my history, and
the on going difficulties I've had with the Social Security Administration,
and the nightmare it's been to get proper diagnosis, treatment and care from
various HMOs.

In a nutshell I've suffered from malabsorption symptoms since birth.  I've
come close to dying from diarrhea (now there's an epitaph for you) more
times than I care to recall.  However, despite my symptoms (and perhaps
because of them) I was labeled (at my mother's urging) a neurotic
hypochondriac prone to panic attacks.  Consequently my symptoms never
resolved, got worse, and I eventually developed symptoms of a host of other
physical ailments (Fibromyalgia, TMJ, Tourette's, Raynaud's, degenerative
bone disease, cardiac arrhythmia, multiple food and medication intolerances
and sensitivities) all of which were assumed to be psychosomatic in origin
and verification that I suffered from chronic mental illness.  My eventual
psychiatric diagnoses were Multiple Personality Disorder, Agoraphobia and
Panic Disorder.  The good news is that during the course of the past three
years I've learned that my physical symptoms are real and I'm not as much of
a nutcase as everyone assumed I was.  (Isn't it amazing that my depression
and panic symptoms more or less stopped after I went on a g/f diet?)  The
bad news is learning how sick I have been and continue to be.

I've been served (yet again) with a pile of papers from Social Security,
which they said I requested (I didn't).  They claim overpayment of benefits;
a long story I won't get into on this post.  (If you want to know specifics
you can e-mail me)  The point is, I've gone through two reviews two years in
a row, and now this.

Unfortunately for me, this couldn't come at a worse time.  I'm currently
extremely ill, and in the process of attempting to learn the full extent of
my various physical illnesses.  (The list is too long and keeps getting
bigger)  Last November, after literally 18 months spent begging for a
gastrological consult, (during which I lost in excess of 100 pounds!!!) I
was finally granted one when my surgeon intervened and sent a letter to my
then primary Kaiser physician stating the need for an exam prior to my
gallbladder surgery.  Luckily for me, after five years of being gluten free,
(also spent begging for a gastro consult) my intestinal tract still showed
damage, and a diagnosis of Celiac disease finally confirmed.  I can only
imagine what my intestinal tract might have looked like had it been examined
five years ago (prior to going g/f) when I first requested a gastrological
consultation.  Thank God I followed my own instincts and remained gluten
free during that time.

I can't believe my case is an isolated one, there must be others like me
who've been forced to endure insults, innuendo, pain and suffering at the
hands of well meaning doctors, nurses, therapists and social workers.  I
know how close to suicide I've been and how painful the process of getting
properly diagnosed has been.  When I think about that sort of pain
multiplied by thousands of others like myself it makes want to cry.  Current
U.S. statistics state that only 1 in 1000 Americans suffer from Celiac
disease.  The international medical community, along with various U.S.
physicians are going on record to state those numbers are woefully
incorrect.  If we can assume that the 1 in 250 estimate of Celiac patients
used internationally is correct, then you realize in excess of 26 million
American currently suffering from Celiac disease are either misdiagnosed or
undiagnosed AND untreated.  A deplorable situation, which I'm sure you'll
agree is untenable and should be resolved.

I don't know about you, but I'm sick (both figuratively and literally) of
having my life put on hold until the powers that be (HMO's, Social Security,
etc.) decide as to what diagnostic treatments they'll allow me and or, if
I'm sick enough to retain social security benefits.  The fact that I had to
endure 18 months of constant and severe bright yellow diarrhea, extreme
abdominal pain and other gallbladders symptoms while constantly being told
all I had was gas, that I was too hyper and/or I was making myself ill IS
NUTS!!!!  The simple fact that I could easily have died had my gallbladder
disease been allowed to progress to the point of necrosis terrifies me
beyond words.  That so many of us are forced to beg for diagnosis is absurd
and cruel beyond words.

I'm currently unable to digest food properly, my malabsorption symptoms are
back, and I'm still loosing weight.  Additionally, since my surgery I still
can't digest fats and I've developed intolerances to a number of foods I
used to be able to eat in the past.  I more or less live on water and this
rich soup I make from scratch as it's all I'm able to eat.  I'm now facing
the very real possibility that I suffer from pheochromocytoma (a rare
adrenal type cancer) and/or Acute Intermittent Porphyria.  With the way I
react to medications, the idea of more surgery chills me to the bone.
Needless to say this is an extremely stressful time for me, and simply
getting through a day takes most of my energy.  The LAST thing I need is to
face yet an other go around with Social Security.

My first instinct is to write a letter to every major news service,
outlining the horrors I've been forced to endure throughout my life and what
it's like to live with Celiac disease ... how it distances you from others
socially, etc., and how painful the symptoms can be.  Then go to the steps
of the main Social Security Administration office in Los Angeles, CA ...
cover myself with gasoline, and set myself on fire.  But when it comes down
to it, I'm not quite that crazy, I don't enjoy pain (death by fire sounds
pretty painful) nor do I wish to die.  I'm just really REALLY tired of
having to go through all this baloney (if you know what I mean).  So I've
decided the best alternative for me is to fight back in a BIG way.

That said, if anyone else would be interested in having their story
forwarded (along with my own) to every U.S. news service, senator and
president Bush, please contact me by e-mail and I'll give you the specifics
along with my mailing address.  If you'd rather not mail me your information
I highly recommend you write either a senator or congress person on your
own.  The more of us who reach the government, the more aware they'll be of
our situation.  I'm putting together a packet of information on Celiac
disease and the difficulties Celiacs have in getting proper diagnosis and
treatment.  If you're like me I'm sure you'd much rather be feeling healthy
and working, than sick and miserable trying to survive on Social Security
benefits.  A point I'd like to get across to the powers that be.  NOTE: The
Americans with Disability Act guarantees that all disabled be granted equal
access.  Isn't about time Celiacs achieve parity in treatment?  (e.g. the
right to go to the bathroom when needed, the right to see a doctor when
needed without fearing termination, the right to work from home when too ill
to go into work, etc.)

Lastly, lest you think me totally insane, prior to becoming too ill to work
I actually accomplished a lot in my life.  You can look me up in Who's Who
of American Women [Macmillan Directory Division] in any issue from 1991 to
present.  I mention this fact not to brag about what I've done, only to let
you know I'm a real person who's always tried to keep going and accomplish
good things DESPITE how I've felt.  Also, because once a person's been
labeled mentally ill (like I have) people tend to discount much of what you
say.

Thanks for taking the time to read this.

Love and Care,
Jeanne Barkemeijer de Wit