My Story

My story began in 1972. This part is revelant to my diagnoses. Five
months after my marriage breakdown, while I was at work, my
ex-husband came and took my seven year old son from the baby sitter.
Within days he allowed him to cross a busy highway. My son was struck
and killed instantly. I was completely shattered. I was even unable to
attend his burial. Pat (my twin sister ) laid six long stemmed red
red roses on his little white coffin. I then began a daily routine of
injections and medications. Life was a complete blur to me. A Dr. was
treating me for Arthritis and my whole body ached. I became allergic
to many drugs such as Antibiotics, Penicillin and Cortisone. One year
later I was no better. My skin as well as being blotchy became very
tight and my fingers had open wounds continuously. I couldn't raise
my arms above my shoulders. Through friends at my work place
( animal nutritional research ), I took the advice of a research
scientist and sought a second opinion. This new Dr. took a long look at
my hands and consulted with his colleague. Then an appointment was
made for me to visit a dermatologist. This became the longest day of
my life. It wasn't long before I was called in. My mind went blank when
the specialist took only seconds then ask me to lay down because he had
some bad news. A word was mentioned as he began to explain my rare
condition that according to records I would be about the twelfth case
diagnosed in Australia.

All I could say was "Am I dying?" I vaguely heard him say "Two years at
the most." My only thought through it all was "Oh my God...how can I tell
my only son that I was going to die so soon after his brother?" The Dr.
rattled on about the reason for my complaint, while I still didn't know
the name of this horrid disease as it hadn't registered in my mind. He
said that he believed that it was caused by a severe emotional upset. I
was admitted to the hospital and went through traumatic tests. Several
weeks later I was allowed to leave the hospital...with a letter and
Tofonil tablets ( this was the only medication they could prescribe.) I
then opened the letter. It was for my work. It said that due to my
illness that I was unable to return to my duties. The next day I
forced myself to my work place ( with no letter ). I had the name
of my complaint written down so I gave it to one of the Animal
Research Scientists. That's when it all started happening. He
immediately did a lot of reading up and came to me with a bottle of
vitamin E. I took his advice and began taking massive doses. Within
three months I was WALKING back into the hospital. Doctors were
amazed. They patted me on the back. Examinations proved that it had
arrested at my knees. I thank my office staff for all the time they
put into pushing me around on a bike and also for the Gene Pitney
and Village People tapes they made me dance to every morning...
afternoon and during lunch breaks.

After 24 years I retired from my position as a finance officer.
Since then I have had several amputations. I now have only one full
finger on my left hand and one finger and thumb good as can be
expected on my right hand. The other three fingers are very badly
deformed. I became bored and took up doing Arts and Crafts with
the aid of my friend going to the markets with me each weekend.
But the cold got to me ( Raynauds Syndrome ) which is part of my
condition. I went into the work force once more as a cashier
for another two years. I finally retired in November 1999 for good.
I still attend the Research Unit at a large city hospital. I
had my usual visit to my local G.P. on Monday 3/4/2000 for all
the normal blood tests,ect. After all these years I ask him what
kind of Scleroderma I had. His reply was "THE WORST" but keep
doing what your doing as you are a battler. It could be work...
Vitamin E or your positive outlook that's helped. Scleroderma
was an absolutely dreaded word to me. My life expectancy of two
years has now continued to be TWENTY SEVEN YEARS! I was able to
stay in the work force until last year. I led a near normal life,
keeping a home and seeing my remaining son Tom reach manhood and
marry Gillian. Now I'm enjoying my grandchildren,Tim and Emily.
Let's begin regarding my other disabilities as promised. Well...
what comes first? Let's see. You have a run down on my hands
which I should have gone into more detail about.

Prior to my operations I have to go through a Prostaglandin
Infusion for 72 hours. I fear drips unless they are attached to a
monitor. This is a tube inserted in the side of my throat which
is directed through my veins to the heart and lung region. I have
bolts on both sides of my neck to restrain me( no joke! ). I'm
scared from the time of insertion until it's removal without this!
I have no healing process so the Prostaglandin dialates my veins
for a good blood flow and healing. I was a first for this
procedure and now others have followed. I'm embarrassed to
mention some of my internal problems. But...what the heck?
I'm still here! I have no control over my bowels. Each morning
I use a mini enema to clean the bowel out completely and then I
use a disposable napkin before I leave the house. I have no
feeling whatsoever. I had many tests taken concerning Cancer
but they were all negative. Next on my agenda is my swallowing.
I'm only on baby food and mashed veggies. Professor Young
informed me 7 years ago after one of my annual endoscopes that
he was only able to get a baby tube down my throat. He woke me
from the land of NOD just to tell me this great news! My reply
was "Well...I'll eat baby food!" I'm now use to the fact that
I'm unable to munch an apple or have a big juicy steak. Meat
went out of my diet twenty five years ago.

I've just been for a long walk...actually that's a little
white lie as I'm lucky if I can pull myself away from this
computer...and it reminded me that I have puffing
( shortness of breath ) from the lung deterioration. I also
have a heart rhythm abnormality which was found only three
years ago even though I had been complaining about
"butterflies" in my chest from the onset of my diagnoses.
I would say they put me through more Echocardiograms than
all of the heart patients in Aussie. The heart rhythm
abnormality was picked up accidentely. When the
cardiologist was called to the phone he ask the nurse to
remove the equipment. She then ask what was going on. I
shook my head as always leaving things as they were. She
waited for the DR. ( even more Dr's by this time ). I was
shaking in my boots lying down as I was of course scared out
of my wits since my greatest fear ever is of having a heart
problem.Not that I should worry...my Dad was ninety-two
when he passed away. We were all told that his heart wouldn't
stop beating even after he suffered a major stroke. It took
three weeks before he finally gave in. My sister (one out of eight)
told him to hurry up or she would beat him to heaven!

Anyway due to the heart problems I'm taking Cardizem. I also
have angina and high cholesterol. This is now under control
with Lipex plus the usual diet of no animal fats. I have a Hiatus
Hernia that I take Omeprazole Maxor 20 mg. This capsule I have
been on for many years and I can't start the day without it.
I take three goblets of water of water to bed with me each
night (not a jug because I wouldn't be able to lift it) As soon
as I open my eyes I reach for this capsule. It takes two full
goblets for me to swallow it. Within half an hour my throat
feels open and there's no heartburn. Then I take my second
tablet (alprazolam). This gets my body and muscles on the
move. Now I can manage to rise and get myself a mug of coffee
which I take back to bed (about 5:30 AM). After I stop
puffing I sit still and watch the soapies that I taped the day
before. At 7 AM I make another coffee with my bowl of cereal.
I rest until around 10 AM either in bed or at the computer...
then it's coffee time again! I never use medical term...as
people always say "WHAT?" So the only reference I make is that I
have tight skin. I have intense Raynauds and winter is my enemy
along with sudden weather changes which play havoc as I suffer
vasospasms. UGH!I also have Alopecia ( hair loss ) which was
caused by the antibiotic Kluxin, which I call the ku-klux-klan.
I have hair pieces from short to long.

I also have Calcinosis which is a buildup of Calcium. My G.P.
tells me that it isn't due to too much Calcium in my diet. I have
large forms of it on my fingers and now one on my ankle. At times
it oozes out like Zinc cream and I can't resist picking it and
squeezing it. But...all that stopped when they started to
amputate. To dress my wounds I clean then with tea tree oil and
then apply Savlon powder and a bandage. I now have only one
antibiotic that works on me (Ciproxin). I now have to wear a
hairpiece and three deep shoulder pads as my shoulders are as
round as a ball. My siblings consist of seven sisters and five
brothers...13 in all ( with me being the youngest...twenty
minutes from my twin sister Pat ). In July 0f 2000 I was
operated on my right hand which was to be a great asset.
That turned into a disaster! My index finger was amputated past
the middle knuckle the other three had partial "amps" as they
say in Aussie which entailed the removal of my middle knuckles
and shortening of the fingers taking part of the bone away. I
became very ill from those operations as it affected my lungs
which leaves me with only half right lung. Calcinosis plays
havoc with my fingers still! If I had known all that I would
have let them chop the lot off as they are no earthly good to me.
I am unable to write...I must carry a letter with my ID attached
at all times. I don't know why I am complaining...when I was
given 2 years to live and now I am well past 28 years!

Thank you for allowing me your time. Please always think
POSITIVE...CHIN UP...SMILE through all your pain. It's not
easy but it seems to help a little. My motto is if things go
wrong SMILE and REST...if you must... BUT DON"T YOU QUIT!!!!

Pammy AKA Ozzie.