I was diagnosed with morphea at age seven. Now at age thirty-three, I have recently developed systemic scleroderma with gastrointestinal manifestations, Sjogren's syndrome, inflammatory arthritis, malabsorption (celiac, ulcerative colitis, Crohns disease?), and many more. I have had secondary Raynaud's for years although recently it has gotten worse with digital ulcers.
I also have great difficulty with apthous mouth ulcers. They are always in my mouth although they flare up at times worse than others, they are extremely painful and I get cracks at the corners of my mouth and have bad dental problems. My mouth is getting tighter, I have difficulty with swallowing, talking and hoarseness. This makes it hard to eat and drink, and I am already very thin.
I have many other chronic diseases including chronic disabling migraines for seventeen years, fibromyalgia, depression, allergies, eczema, esophageal reflux, constipation, tendonitis, urinary incontinence, and restless legs syndrome. I have also experienced severe trauma and physical and emotional abuse.
When I was a kid I was often asked if my parents abused me because of the large bruise like areas on my hips and legs (especially during swimming), and even today at doctors I often am asked if my husband beats me.
Some of the most difficult things with any of my chronic diseases are not being able to do things for myself, having people not believe I'm sick ('you look okay') ,and accusing me of having an eating disorder. I also have a handicap sticker and get rude comments and looks constantly. Last of all, not being able to do things I love doing. I love to shop, travel, draw, write, read, go to concerts, etc. Unfortunately I get sick in the car so I can't travel far. My hands are so swollen and stiff that I can't open bottles, etc. It's extremely frustrating at this age as I wet my bed, I have urinary incontinence from my seventh pelvic surgery for severe endometriosis of ovaries, fallopian tubes, rectum, ureter, and bladder.
I also have adhesions from all my surgeries and these cause severe pain daily. My last surgery they took my last ovary so I am in menopause (no uterus, or ovaries left, or appendix).
I live near Madison Wisconsin if anyone is near by. I also would love to volunteer. I am especially interested in animal rights and have been a vegetarian for about seventeen years, something I am proud of.
I have been married for fourteen years, although we are separated at the moment. I raise my son mostly myself and I wish people would give me more credit. They should think of how bad they feel when they get the flu and then think of about fifteen more conditions each with its own problems. Every day, no breaks, raising a kid, keeping house, paying bills, it is very hard.
My son keeps me going , he is my star, he is so helpful. I don't know what I would do without him. He asked me a week ago if I was going to die because of all my illnesses?
All I can say is, if you have your health, cherish it. All the medications, doctors, pain, fatigue, and not knowing if tomorrow will be the day my kidneys shut down is a lot to handle. However, I enjoy each day to the fullest and am thankful every day. I don't blame or regret my illness, I just want to help others.
Email: [email protected]
Story edited 08-10-08 JTD
Story posted 10-04-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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