Hi, my name is Becky, and I was diagnosed with limited scleroderma approx.
2 yrs. ago. Up until then I had been an extremely active person. I have been an
aerobics instructor for almost 19 years. I've been a runner, currently an
avid walker, and love to dance. I have done many things that keep me happy
inside.

My first marriage was a terrible one that I withstood with a physical
and mental abuser for a husband of 17 yrs. I finally got smart and divorced. I
lucked out and met a wonderful young man that had everything in common with
me. I say young, because I was 35 and he was 20. We have been married for 12
wonderful years. He had a 2yr old who I raised as my own. He knows me as his
only mother. I already had 2 children from the previous marriage, and since he was so young I felt he needed another child of his own blood, so we have yours,
mine, and ours. Everyone loves each other very much. My children's ages range
from 27- 20-14-11.

 
It's been hard at times. Everything was fine until my diagnosis. My brother who was 48 yrs old and one of 10 kids died of cancer. He suffered 8 long yrs., and endured several painful surgeries at the hands of doctors at the Bethesda Maryland Institute of Medical Technology, where he was instrumental in being part of research for the cancer that would eventually take his life. Fortunately I lived close enough to the hospital to help care for him. I spent as much as every weekend and weekdays away from my large family as well as money to keep him company and care for him through his recoveries. It was exhausting and extremely stressful. Meanwhile scleroderma had been lurking in the corners of my body, but it made its grand entrance 6 months prior to his death. It came in the form of swollen hands. I thought water pills would suffice. Wrong answer. I received my diagnosis about a month before he died.

I was devastated at first, but then, not really understanding the disease itself , I quickly put the worry to rest during the funeral. On my way home I visited my brother who is a nurse in the Dallas area. As I was alone watching a program sponsored by America's Funniest Home Video's host about his sister, I was hit with a gripping fear. She died of systemic scleroderma. I was so scared and felt so alone. As soon as I got back I went to my doctor . He said not to worry, that I had limited scleroderma. I felt better about things, but still, things were happening.

In Feb. of 97 I came down with pneumonia. Since I was so physically fit and I don't run fevers the doctors had a hard time finding the pneumonia. After several times in the
emergency room and being told there was a chance I could have scleroderma in
my lungs , upsetting me and my husband. I was bedridden for about 2 months.
My daughter got married in April, and I was very tired then, but we survived
it. Just when I thought the coast was clear and continued to teach aerobics,
whamo! I suddenly got congestive heart failure, then from there dermatologists
tested my skin and found that I have macular amyloidosis, another incurable
disease. By that time I was taking lots of medicines. Then got orders for
Hawaii.

Here I am in paradise, and all of a sudden my thumb joint starts
hurting . Doc says the amyloidosis is causing crystals to drop into my joints
causing pain, more medicine. Today it's my ankle. What is next? I cry every
time I go into the hospital. I learned alot from my brother. He was a hero. He
had strength and courage that a normal person could not have. He never thought
of dying only about living. I was holding his hand up to his last breath, and
he fought it bravely. He orchestrated his own funeral , and what a procession.
He was a captain in the police force. I hope and pray that I can be as strong
and brave as he was. Thanks for listening

UPDATE: Instead of Aloha it has changed to HOWDY since i now live in central Texas.  I have been fortunate that my illness has progressed slowly and i don't
let it hold me back. It is on my hands so far the worst, but i have a
constant rash on my face and wonder if that is related to the
scleroderma and wonder if that means it will attack my face. I pray not,
but the rhuematologist says it is caused by the sclereoderma. The rash
is all around my face but the worst is around the base of my nose, and
now the rash is all over my eyelids. If you know anything about that
would you contact me about it.... Thank you so very much. my husband and
i are still very happily married and are sending our last child off to
college after graduation this year....Becky
Email bhagins@hot.rr.com

 
 

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