I live in Alabama with my husband, Richard. I have two grown sons, Gregory and Christopher. I thought it was time for me to tell all about my life since I was diagnosed with limited scleroderma in 1981 at the University of Alabama, Birmingham.
When I first got sick, my symptoms were carpal tunnel syndrome. I had numbness in my right hand that was especially bothersome at night. I could not go to sleep because my hand felt dead. I would get up at night and walk the floor shaking my hand to try to get the feeling back in it. Eventually I had carpal tunnel surgery on my right wrist and it helped a lot.
After that, my hands starting turning blue and would really hurt. I will never forget the first time I knew there was something terribly wrong with me. I was in our garage, pulling down the door in the wintertime, and I completely lost all feeling in my hands. When feeling did return, it was extremely painful. I went from doctor to doctor trying to find out what was wrong with me until I was diagnosed with Raynaud's phenomenon. I had just the Raynaud's phenomenon for about three years with no other symptoms.
One year my husband caught a virus that was going around and, naturally, I caught it too, but he got better and I did not. It was as though the virus symptoms finally went away, but other symptoms took their place. I started having severe muscle weakness; it felt as though someone had attached a vacuum cleaner hose to my big toe and literally sucked all of the strength from my body. Someone who has scleroderma would understand this feeling.
One of the saddest things about this disease was that nobody understood what I was going through. I felt so alone. I went through the hardest years with scleroderma with no one to talk to about how I really felt. When my son Chris got a new computer, he gave me his old one. The computer literally changed my life for the better. I have learned that many people have scleroderma. I am not alone anymore.
I had the extreme muscle weakness for three very long years. I did not think I was ever going to feel good again. Even though my muscle strength was down to about zero, the doctors never put me on anything. I never took any of the antirheumatic drugs. They told me that sometimes it is better to wait and see just how bad the disease may progress because the medication side effects could be really bad. I truly feel that my health was overlooked a lot during this period.They did give me medicine for the joint pain. It caused problems with my esophagus and stomach, so I stopped taking it. Mainly, I took pain relievers only if my pain was severe.
When I started to have problems with my esophagus, it began with severe heartburn (reflux) —like a lit match —from my throat down to my stomach. I was given medicine for that. I was bothered for years with heartburn until I started to sleep in my recliner in a slanted position. I no longer have to take medication for heartburn. I never lay down flat because if I do, I get acid reflux. I guess you can say I have learned what to do and what not to do with this disease.
Next to the muscle weakness, finger ulcers were and still are my worst problem. I know, beyond a shadow of a doubt, this is the worst pain in this world. It breaks my heart in two that anyone should ever know this pain. I have to be very careful with my hands, especially in the winter months. I stay inside nearly all the time in the winter, and when I do go out, I wear very warm gloves (preferably mittens). I have never been able to take any of the medicine prescribed for my circulation. They give you mostly high blood pressure medicines for it, and I already have low blood pressure. For that reason, it takes me months to heal an ulcer. It is extremely important to keep an ulcer clean to avoid infection. I use tea tree oil, and cover it with tubular gauze for fingers, which I purchase at a local medical supply store.
All of this gets very depressing so my doctor put me on an antidepressant, which has helped me very much. I have had to learn on my own how to take care of my fingers because one doctor would tell me one thing and another would tell me something totally different, so I basically had to learn what helps me and what does not. I also have learned a lot from belonging to different email message lists on the Internet. I consider all of my online friends to be my second family.
The main thing I am having problems with right now is calcium deposits (Calcinosis) right beneath the skin that will, eventually, come through the skin and cause infections. I have them on my elbows, knees, fingers, and lower arms. I have had many infections caused by the calcium deposits coming through the skin so I have had to take many antibiotics that, in turn, have caused yeast related problems.
I cannot win for losing! Ha! Not funny, but we have to laugh sometimes! I have had many calcium deposits removed from my knees and my elbows, too. When I get rid of the deposits, my problem of infection goes away.
I would like to say that despite this disease, I have managed to go on with my life. I do a few things a little differently, and there are things I can no longer do —I have to accept that. I have to or else it would get the best of me, and I do not intend to let that happen! I have to be strong when I feel I cannot be, and take life one day at a time. Nobody knows what tomorrow holds.
I find it helpful to carefully weigh everything I hear about these diseases and to care for myself in every way possible. It has helped me to be very conscious of what I eat, to stay out of stressful situations, and to exercise as much as my body will safely allow. I discuss everything with my doctor and get his opinion, however, I do not depend totally on him for every single thing, because he may not tell me absolutely everything I need to know. I am a partner with my doctor in my care, and I should read everything I can about the disease. I keep in mind that they usually write about the worst cases.
I will never forget the first time I went to the library to read about scleroderma! I was scared half to death! So I remember that it does not affect everyone the same way! Worrying about health will only make me worse because stress does affect disease.
I find hobbies are great for taking my mind off my health problems. My hobby is stained glass. I enjoy it so much, however, I must be extremely careful with my hands by wearing gloves to avoid cuts. It is probably the worst hobby a person with scleroderma could ever have! Call me stubborn. I am very proud of the work I have managed to do, despite the shape my hands are in.
Last, but not least, I laugh as much as possible, because laughter is the best medicine! I have had this disease for over twenty years and I plan on being around a lot longer! My favorite saying is: "When life gives you lemons, make lemonade!"
My hope is that one day soon, they will find the cure for these diseases. Let us all work together to educate people about all of the connective tissue diseases!
Email Address: [email protected]
New email address needed 08-06-09 SLE
New email address posted 04-10-10 SLE
Old Email Prefix: Ladyann21
Above: Photo of Stained Glass Lamp
which was made by Shirley Wright
Story posted 2-19-02
Story edited VH1: JTD 8-12-03
New email address posted 4-15-04 SLE
New email posted 8-6-04 SLE
Story Editor V1: Judith Thompson
Please visit my website:
Calcium Deposits (Calcinosis)
Carpal Tunnel Syndrome
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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