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FMS & ME
I was born in Glendale, California, on November 25th,
1969, raised the first few years of my life in silvery
Hollywood, and transplanted to Midway City (aka Little
Saigon) around age 3. As a baby, my mom claims that I
never slept. Just what every new mother wants! As I
grew older, I was a hyper child. Most of my friends
were boys older than me and I played their vigorous
boy games, "Cowboys & Indians," "Cops & Robbers,"
"Live Reenactments of Scenes From Star Wars with Fresh
Fruit," etc. I loved sports and was very athletic. I
excelled in softball, basketball, ran track & field,
swam like a fish and received ribbons and trophies in
all those fields. At the same time, I had allergies
that were alarmingly difficult to reign in. My folks
shlepped me to GP's and allergists constantly. I had
"scratch" tests which were like some form of archaic
torture method. Still, I was fairly happy throughout.
Heck, I was downright giddy! I had recurring sinus
infections, scarlet fever, chicken pox....My mother
was frantic in her attempts to better my health. She
made my bedroom "sterile," removing carpeting and
draperies and accouterments, & admonished me to not
keep any thing aesthetic & not useful that would just
"clutter" & "collect dust."(Now I'm an artist
specializing in creating things solely for their
"aesthetic" value!)
The tide took a dramatic turn when I reached age 13. I
slowed down, became fatigued, depressed, withdrawn.
Everyone just chalked it up to adolescence, but I
believe now, that FMS was beginning to kick in. I
remained lethargic & withdrawn throughout my teen
years. I seemed to be feverish every day. I felt
flu-like symptoms constantly. One day, in the band
room in my high school, my friend Kristen was cleaning
out the band's first-aid supply kit. To be silly, she
popped a thermometer in my mouth, and we were both
startled to see my temperature was over 100 degrees!,
when I didn't feel any different than was normal. At
home, I withdrew into myself, into books & music. In
my early twenties, I began to climb slowly, like a
bear coming out of hibernation, out of my shell. Still
without insurance or the financial resources to really
delve into my condition, I soldiered on, throwing
myself head-on into every activity I attempted. But I
always felt sick and the most mundane tasks seemed a
struggle. Yet, strangely, that motivated me to make
decisions and grab opportunities I wouldn't have
otherwise chosen. At a time when most of my friends
were setting up house or pursuing degrees/careers, I
took off across country by myself to explore for a
couple months. I drove slowly up the whole of the West
Coast, came to Seattle, and settled there for awhile
when I was 18. I've played guitar in bands & led the
rock-n-roll lifestyle, partying until dawn. Then
around my mid-20's, my condition began to worsen. I
would be standing up straight, and suddenly, my knees
would buckle and I'd fall. It was particularly
noticeable whilst attending college, where I had many
classes up many flights of stairs, and there was no
access to an elevator. How I dreaded those stairs! By
the time I got to the top, I'd be exhausted, sweating
and panting. I'd collapse at my desk, only to consumed
with brain fog. How frustrating that was when I'd
studied for days for an important test. If I was late
for a class, the brisk walk across the large campus
would bring about terrible pain in my legs the day
after. It wasn't any easier at work. When given a
task, I'd often forget the instructions within
moments. Dizziness and disorientation became
increasingly more frequent, daily occurences. I began
to get really scared. My family speculated that it
could be MS or Lupus, since they run in the family,
yet I was in no position to find out for I didn't have
medical insurance.
On a trip to Ireland in 1995, my health got so bad I
couldn't walk for a couple days. I knew now that
something was terribly wrong. I became suicidal and
depressed at times. I still was financially unable to
seek a doctor's care. But I plowed forward. I got a
full-time job, and for the first time in my life, in
mid 1997, got medical insurance. I saw a few doctor's
until I got the diagnosis. "Fibromyalgia Syndrome?"
I'd never even heard of it!
My rheumatologists' flip demeanor did nothing to allay
my fears. At the time of the diagnosis, there seemed
to be a dearth of info on FMS at libraries and
bookstores. That has since changed. But back then, I
was saved by Devin Starlynal's wonderful book on the
subject,"Fibromyalgia and Chronic Myofascial Pain
Syndrome."
By researching & studying everything I could get my
hands on, I saw that FMS is a real disease and came to
realize the extremity and complexity of the condition.
I sought psychiatric counseling and my rheumatologist
put me on Elavil. But I felt no change in my condition
after a few months on the medication. In fact, in a
sense, I felt worse! I'd become a zombie! I tried
Pamelor. Same thing. I tried Flexeril & Naproxen. No
diff.Meanwhile, I was eating extra-strength Tylenol
like candy to get me through the day. I quit my job in
1998 and moved to London to be with my
then-boyfriend/now-husband Chris, and there, my
condition deteriorated. The combination of the cold
climate, the crowded noisiness of London life, and
stress in my personal life did me in. My symptoms
ranged from blurred vision, to spasms, to intense all
over muscle pain that literally brought me to my
knees. After much deliberation, we left London for
good, and returned to California, where the climate is
milder, and I've got friends and family to help
support me. I've managed to nurse myself back to a
more livable state, with the aid of Chris & my
parents. I'm taking care of myself holistically, using
info I've culled from the Internet & by trial & error
on my person. I still need to get a lot of rest. I
spend anywhere from 10-14 hours in bed daily, but I
don't experience the devastating flares that turned me
into a rampaging, screaming banshee girl. I have to
use a cane occasionally, and I'm unable to hold a job.
Playing music is still important to me, and I play
guitar & mandolin on those days my hands are working.
My husband & I have a musical project going on and
have made some recordings of our music and we perform
now & then in LA and Orange County.
As for the general state of my health, I'm better now
that I know for sure what I have! Although new
symptoms crop up all the time, and I'm in constant
muscle pain, I feel that I'm a very lucky woman to
have a husband and mother that give me such great
support. Believe me, I don't take it for granted!
I've made two attempts to get disability, to no avail.
Due mostly to the fact that I do not see a doctor
regularly, since there is no medication or effective
treatment for FMS. If you want to play the game,
you've got to play by society's rules! Society is set
up in such a way, that if you want to get the benefits
you're entitled to as an American citizen, you've got
to fork out the bucks on expensive doctors and keep
them well stocked in Mercedes Benz's, even if there is
absolutely nothing they can do for you, except tell
you to eat a healthy diet and get some exercise!
It is my sincere hope to see Fibromyalgia Syndrome one
day soon recognized by the medical community and the
media as the truly debilitating, curseful condition it
is. The millions of us in too much pain to speak out
or raise a finger need household assistance,
affordable medical care, and sympathy from the medical
community, not derision. Then and only then, will the
alarming rate of suicides amongst those afflicted with
FMS drop. We need our pain quelled and our voices
heard. Hope my story is of some use to someone
somewhere.
Angel LaCanfora-Jones
Visit my website for more info on FMS
http://fmsangel.8m.com
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