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"Living with Scleroderma"

My name is Shirley Wright and I live in Gadsden, Alabama
with my husband Richard. I have two grown sons..Greg
and Chris. I thought it was time for me to tell all about
my life since I was diagnosed with Scleroderma in 1981
at U.A.B. in Birmingham, Alabama.It has been a very hard
twenty years. When I first got sick...the first symptoms
were Carpal Tunnel Syndrome. I had numbness in my right hand
that was especially bothersome at night.
I could not go to sleep at night because my hand was dead,
I would get up and walk the floor shaking my hand trying
to get feeling back in it. I eventually had to have surgery
and the surgery helped it a lot. After that though my hands
started turning blue and would hurt real bad. I will never
forget the first time that I knew that something was terribly
wrong with me. I was in our garage one day pulling down the
garage door in the winter time and I completely lost all feeling
in my hands. It was extremely painful. I went from Dr. to Dr.
trying to find out what was wrong with me.

Then one year my husband caught this virus that was going around
and naturally I caught it too but he got better and I didn't.
It was as though the virus symptoms finally went away but I had
a lot of other symptoms take their place. I had severe muscle
weakness and could hardly go to the bathroom without assistance.
I felt as though someone had attached a vaccumn cleaner hose
to my big toe and literally sucked "ALL" of my strength in my
body from me.The only people that would understand what I am
talking about is someone else that has Scleroderma.
That is one of the very sad things about this disease is that
nobody understands all that you go through.You feel very alone.
I went through the hardest years with Scleroderma all alone
with no one to talk to about how I really felt about having SD.
Then my life changed when my son Christopher gave me his old
computer when he got a new one. That computer literally changed
my life. I have learned that many many people have Scleroderma.
I am not alone anymore.

I had the extreme muscle weakness for about three years...
three "long" years. I didn't think I was ever going to feel
good again. My DR's at U.A.B. never put me on any of the BIG
DRUGS...they told me that sometimes it would be best to wait and
see what the disease was going to do to me because the side
effects of the medicines was so bad sometimes.
They gave me medicine for
my joint pain that I could never take because of my esophagus
involvement. I eventually had to have my esophogus stretched about
three times so mainly I just took TYLENOL for my joint pain along
with pain medicine when my pain got real bad.
When my esophagus started to bother me I had severe heartburn
all the time. They did give me medicine for that. I was bothered
for years with my esophagus problem until I started to sleep in my
recliner in a slanted position. I no longer even have to take med's
for my esophagus. I never lay flat down because if I do...I have acid
reflux. I guess you can say say that I have learned what "TO" do and
what "NOT" to do with this disease in order to help myself.

My next problem with this disease and the worst next to the muscle
weakness was and is "FINGER ULCERS". I know beyond a shadow of a
doubt that is THE worst pain in this world.It breaks my heart that
anyone should hurt this way. I have to be very careful with my hands
especially in the winter months.I have to stay in nearly all the time
in the winter to prevent ulcers from forming. All this gets very
depressing so now I am on ZOLOFT for depression.It really has helped me.
I have been through different things at different times with SD. It has
been a roller coaster ride for sure. In other has had its ups
and downs .LOL!! Not funny... but we have to laugh sometimes...don't we?
I have had to learn on my own how to take care of my fingers. I also
have learned so much from belonging to different digests on the
internet.I consider all of my digest friends to be my second family.I
have never been able to take any of the medicine that has been
prescribed for me for my circulation over the years because they
usually give you medicine for high blood pressure and I can't take
it because I already have low blood pressure. Just my luck. For that
reason it takes me months to heal an ulcer.

The main thing that I am having severe problems with now is
Calcium Deposits right beneath the skin that will eventually
come through the skin and cause infections. I have them on
both my elbows and both my fingers and some on my
lower arms. I have had many ...many infections from them and have
had to take many antibiotics because of them. I eventually had
to have some of them removed because of repeated infections.

In closing I would like to say that despite this disease that I have
I have managed to go on with my life. I just have to do things a little
different. There are things that I can longer do and will never be able
to do again. I have accepted that. You have to or it would eventually get
the best of you and I am not going to let that happen to me! You have to
be strong and take life one day at a time. We never know what tomorrow
holds for we? For anyone out there that is reading this I
would like to tell you that if you are diagnosed with a Connective Tissue
Disease of any kind to not listen to everything that you hear about these
diseases. Take care of yourself in every way possible. Do not depend
TOTALLY on your Dr's for everything! Read about your illness and
educate yourself all about it. But just remember...when you read
about your illness they usually write about the very worst cases.
I will never forget how I felt that day that I went to the Library
and looked up Scleroderma! I was scared to death! It does not affect
everyone the same way! Worrying about your health will only make you
worse because stress does affect a Connective Tissue Disease.

Get yourself a hobby that you can do and one that brings you pleasure
and some fullfillment to your life. My hobby is Stained Glass and I
enjoy it so much however I do have to be extremely careful with my hands
and wear gloves at all times to prevent cuts. Last but not least...laugh
as much as possible because "LAUGHTER" is "THE" best medicine that you
can give yourself! I have had this disease for over 20 years now and I
plan on being around a lot longer!

If you would like to see some of my Stained Glass that I have made
since I was diagnosed with Scleroderma...please click on the
"Kitty in the Window" below to take you there. Please give each
page at least about 60 seconds to completely download.
The main reason that I am so proud of my Stained glass
is because I made it with a pair of hands that are affected
by Scleroderma...that just goes to show you that there is a "LIFE"
after being diagnosed with a Connective Tissue Disease.

My favorite saying is below...

This story was written on August 8th,2001.

My prayer is that one day soon they will find a cure for these
diseases. Lets all work together trying to educate people
about all of the Connective Tissue Diseases!

September 14th,2002

It has been a little over a year now since I wrote my story so I
thought that it was time to update it a little bit. Since I wrote
this story I have had both of my knees operated on because of infected
Calcium Deposits. It took me a long time to recover from both surgeries.
At least now the Deposits are gone from both my knees...Thank God. main problem is Calcium Deposits in my lower left arm...
right below my elbow. I have a lot there. I expect to have to have
surgery on them real soon.Except for the Calcium Deposits my health seems
to be pretty good. I know I could be a lot worse for sure.
Let us all join together and pray that they will find a cure
soon for this disease that is affecting so many people. Dr's
cannot help us until research finds a cure for this disease that
will allow the Dr's "to" help us.

Update on my surgery on my arm! I had the surgery and the Dr. did
a great job on removing all the deposits in my lower left arm...
I healed fine with no complications.
It was about 6 inches by 6 inches. My Dr. told me that the Calcium
Deposit set up on the operating table all by itself!
Talk about a Kodac moment! But he did not have his camera with him.

April 6th 2004....I found out today that I also have Calcium Deposits
in my feet which is causing me terrible pain plus I have lost the
padding in my feet also. I am really scared about this situation
but hopfully I will find an answer soon that will help me
deal with my pain.

April 8th 2010...UPDATE! I was reading my guestbook and someone said
that I had not updated in a while and was I ok? So....I thought I might
better update am still alive and well living with Scleroderma.
My main problem is still Calcium Deposits. I have had about 15 operations to remove
them but still have some left on my fingers. Other than that I am doing pretty good
considering what is wrong with me. I have had this disease for close to 30 years now
and I am now in remission and have been for a few years. It went into remission on
it's own because I never took any of the big med's. I am a very thankful person to be
in remission and I pray it stays that way from now on.

I would also like to add that my personal story is in the book
titled " Voices of Scleroderma " Volumn 1. If there is anyone out
there wanting to learn about Scleroderma from other people who
actually have the disease themselves it would be a great book to buy.

To buy the book go to the link below.

If you would like to email me...I would love to hear from you! Just click on the kitty below!

Will you please sign my guestbook so I will know who has
visited my page? Just click on the button! Thank you so much!

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