The best we can figure, I was diagnosed with diffuse scleroderma in 1956. We did the usual "scleroderma shuffle" going from doctor to doctor trying to find out what was wrong with me. Eventually, my own doctor suspected scleroderma and recommended that I go to the medical center at the University of California Los Angeles (UCLA). It was there that the diagnosis of my illness was made.
It is almost to the point that I am fearful of getting up in the morning, afraid that parts will start falling off. Yikes! Well, not really. I have known no other way of life, so I do not think living with scleroderma is all that unusual. I quite honestly do not know what normal is.
My lung involvement progressed to the point where I need supplemental oxygen. Everywhere I go I have to tote around my "friend." It is a real pain in the you-know-where, but a necessity that I have gotten used to. I only curse at it once a week now instead of daily.
My parents treated me no differently than my sister. We were raised together and did most things together, as much as I could, anyway. My parents were told I would not live beyond my teens. Hah! A lot they knew! Well, actually, they did not. There was not a whole lot of research being done then, so I suppose no one quite knew what to do with me.
There was no treatment back then, so I never really took anything for it, except once, but I do not know what it was. My doctor sent for something that was in a clinical trial somewhere "back east." It was a powder that was mixed with glucose water and I was given intravenous treatments of this daily for three weeks. We did this twice, a few years apart. There is no way to tell if it did anything or not as scleroderma will go into remission on its own. But, as I went through my teens, the disease did back off somewhat.
From the beginning I was unable to do much physically. My joints tightened up and it was difficult for me to even get up and down off the floor. This sure took care of any aspirations I had of mountain climbing, if I had ever wanted to do such a thing. Besides, the cold on the mountains triggers Raynaud's attacks. Yuck. I grew up, went to school yet never got to play sports, but that was okay with me. After graduation, I got a job and worked, and worked. Meanwhile the disease progressed. It is slow, but they did call it progressive sclerosis for a reason.
Eventually it got to be much more than I could handle and I went on disability. That was fourteen years ago. I have been busy, though, very busy. But, I do things in my own time, resting when I need it.
Right now I am working on a dollhouse. I never had one when I was a child. So I decided it was about time! I built one from a kit and built the furniture to go inside. Some of the furniture was from kits, but some was from my own design. I am also now working with polymer clay, making things for the dollhouse, gifts, whatever pops into my head.
Also, I have my computer. I am on the internet, have my own personal web page, and with two other women created SD World. It is an online email list and support group for folks with scleroderma or other autoimmune diseases. We have a web site that I am webmaster of and I am constantly busy upgrading and maintaining it. It allows me to put my feet up in the afternoons for a while, too.
Now there is a pleasant thought; I think I shall go do that right now! I am glad we had this little chat. Bye!
The nonprofit International Scleroderma Network thanks Ron and Jo Gledhill for their Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. (Also see Donate Now, Earl Manns, and Judy Tarro) Posted 09/16/09.
The nonprofit International Scleroderma Network thanks Gene and Shelley Ensz for their comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses, in loving memory of Judy Tarro. She fell down a few days ago and did not recover from it. She gracefully led our online community through some extremely difficult and challenging times. She is founder of sdworld.org, and SD World email list. She has suffered from systemic scleroderma since she was 12 years old and has been on oxygen for many years now. We will send sympathy cards to her sister for donations in her memory from the nonprofit International Scleroderma Network, at https://www.sclero.org/, where Judy has also been an ISN Artist and Assistant News Guide for many years. Her story of living with scleroderma is featured in the ISN's book, Voices of Scleroderma Volume 3. Posted 05/07/09. (Also see Donate in Memory and Judy Tarro)
(a.k.a. Jude, Aunt Jude, or Aunt Judy)
Email: [email protected]
Story posted 7-16-03 SLE
Photo of Jude/Peach added 7-27-03 SLE
Jude passed away May 7, 2009 SLE
Story Editor: Judith Devlin
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