Susie: CREST Syndrome

I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins. Early on Dr. Wigley told me he would be my coach. I believed him and have learned many things about my health and mental health since being at Johns Hopkins. They truly have helped me.

I am not going to say I did not have initial shock after learning I had scleroderma. My first doctor told me I had only fifteen years to live! I started to cry in his office. He handed me a brown paper towel and told me to quit crying, because I was one sick girl! After that experience, my primary care doctor said he would transfer my case to Johns Hopkins, because scleroderma is so rare.

What followed after the first diagnoses was rheumatoid arthritis, acid reflux, neuropathy in both feet, Raynaud's, Sjogren's syndrome, skin ulcers, itchy skin, nerve damage in my elbows and hands, a bout of gangrene in one finger, shortness of breath, high blood pressure, and osteoarthritis.

I walked with a cane for about six months, but through medical technology I now only take one pill and no longer use a cane.

I went through a research project on Depression and Scleroderma, and was able to re-focus my pain, and think about other places, warm places. This really helped my thinking. Having daily pain is hard on your brain, and the good seratonin to keep in place with daily pain. I was able to switch this around. I am not saying I am pain free, I still have daily pain, but I no longer focus in on the pain.

Initially, I had taken a medical leave of three months. I could hardly walk up and downstairs, and I was out of breath all the time. So, my doctor told to take a leave from work and see how not working would help me.

In the beginning, things were going very well for me healthwise when I wasn't working. The stress from working outside the home was getting to me, and I was becoming so disabled. So, when it came to applying for disability insurance, I had made the decision of not going back to work.

I filed my claim, and then waited for eleven months. After nearly a year of not working outside my home, I was so down and out about not receiving disability insurance, that I contemplated returning to back to work.

I finally decided to go back to work, but not back to my original job. I found something I would enjoy doing and that did not require overtime. I also wanted something in the same field, but not as stressful as before. With stress we can really harm our bodies, especially with having several autoimmune disorders.

I have been working for nine months now, as a mental health social worker. I love my job but I really can tell when I have had a stressful week. It's not easy working outside the home, there's pluses and minuses to it. Even though my doctor gave me the okay last year to quit working, he feels working is better for me mentally.

I also babysit my grandson plus clean my home and tend to my gardens. I keep very busy, because otherwise I tend to dwell in my pain. I'm on many medications to treat my symptoms and to help with my arthritis.

I have met all sorts of wonderful people since being diagnosed and I pray for them. Some of my scleroderma friends have diffuse scleroderma, and they do suffer terribly with their disease.