Joan Stovall: Scleroderma

My name is Joan Stovall. I live near Dallas, Texas. I am a control freak, outgoing, and a type "A" personality. Sometimes I feel I am not just in battle with my diseases, but in being able to stay in control of all my diseases.

It may be easier for me than others because I have been dealing with chronic illness since I was a child. I am 54 years old, as a child I was always sick with bronchitis and lung infections. When I was thirteen years old I was diagnosed with systemic lupus.

Even though I loved the outdoors I was limited because of the sun. I was on the high school drill team, but I noticed I was more fatigued than the others after practice. Back then not a lot was known about Lupus. I went through all the usual things that go with it.

About nine or ten years ago, I was diagnosed with CREST. I went to several rheumatologists at that time and received a variety of diagnosis. Some said I had an overlap, some said, no lupus. Some said just Raynaud's. About three or four years ago (I have the Scleroderma Forgetful Brain Syndrome) I was diagnosed with Systemic Scleroderma. Gradually over the years, I have learned to adapt and to accept my limitations and learn other ways to go around them.

I have twelve specialists and one family doctor. They all work together letting the others know what is going on at any given time. And there seems always to be something going on. I have severe Raynaud's. I had a Sympathectomy on both feet and hands many years ago. The benefits lasted only six months and the Raynaud's came back with a vengeance. I have mild lung restriction with some scarring, I have had to go to the hospital several times with pleurisy attacks and pneumonia.

I have a lot of digestive problems all the way from the esophagus to the colon. I just had my pipes and esophageal ring dilated, but it has not helped very much. I also had an esophageal web. I was told that this could become something I will have to do on a regular basis. In the past nine months I have lost forty pounds. Luckily, I had extra to lose.

My scleroderma seems to be affecting my insides more than my outside. My skin is just now becoming tight. My forehead seems to be the tightest as well as my fingers. I am wondering how I will deal with this disease as my looks start to change, and I would love to hear from others about how they have dealt with it. I have osteoporosis, TMJ, severe migraines, acid reflux and many other afflictions.

I am taking plaquenil, quinicrine, verapamil, penicillamine, prednisone, ziac, didronel, lipitor, synthroid, propulsid, prilosec, imitrex, premarin, water pills, potassium and a lot of inhalers, plus other antibiotics and such off and on.

I have very painful arthritis. I could take pain medicines, but I prefer not to, just yet. It is something that I can bear most of the time. But I wince and moan out loud often with pain. Those that are around me have learned to ignore me, because I tell them it is fleeting pain and it is just a way to release the pain. I guess because I am so stubborn and have the need to feel some control, this is the one area I feel I have the control. My mind is my healthiest asset, and I just do not want to muddle it with pain killers.

Right now the quality of life, being able to function as normally as I can is more important than quantity of life. I do not know if this is a good attitude or not, but it is how I feel.

I have started the Scleroderma Foundation Dallas Area Support Group because I want to do something to create awareness of this disease and to have a place to meet others for support and to learn more. I used to do a lot of crafts and loved to paint, but my fingers ache too much. To keep in touch with my creativity I joined a photography club and have discovered other ways to be creative that I can handle.

My family is very supportive. All my children are grown. Even though they are concerned, my family has learned to deal with things by using humor. When we go out to eat at a restaurant, it is sometimes very comical. I will have a muscle spasm sometimes and my shoulder, leg or arm will jerk or twitch. No one says anything, they just go around the table, each one doing the same twitch. We look like a whole family of jerks. It is especially funny to watch, because no one laughs. It is done with seriousness, without even pausing or looking up, until everyone has done their thing. Then we all laugh.

My motto? I may have scleroderma, it does not have me! Reality check here. I just won't let it think it has me.