I was diagnosed April 1986 after a doctor looked at my xrays and told me my lungs look like they were full of paint. When my Daughter was born in Oct of 1972 I began getting sores in my mouth each month. My mouth was full of kanker sores. I couldn't eat, drink or talk it was so painfull. This happened every month for years.
Next, I kept having pain around the middle of my body. Sometimes it would go away for days then return with increasing pain. I almost died from a diseased gallbladder at age 22. No stones. While the surgeon was taking my gallbladder out they did some exploring of my liver and other organs. Never knew the result.
Once I was finally given a name for my disease Sarcoidosis. Had to practice spelling it. I had a bronscopopy of my lungs, a liver biopsy and told it's in both my lungs and liver.
Since then I have been in the hospital many times with pneumonia. I have been on and off steroids regularly. I got steroid induced cateracts almost over night in both eyes. I know my friends must think I binge eat cause my weight goes up and down. When I'm on the steroids for a while my face blows up like a balloon and all my wrinkles disapear.
I'm 64 years now and I still have Sarcoidosis. I moved to a lower elevation and feel better here. I needed oxygen at 6500 ft. I don't here were I live now.
I guess the one thing I did for myself was not give up on me. I am a real estate broker and have been for 28 years. I have my own company and have had 2 other companies I sold before real estate.
I grew up in a rather poor home and started working before I was out of grade school. I married my best friend out of high school and only went back to school for my real estate license.
It's a struggle some days but I keep hoping for a cure for those of you who are suffering. I have leaned so much more than any Dr has told me on sites like this one. I always wondered if all these other ailments were Sarcoidosis. I'm finding out they are and I am learning some important things I need to do and which vitamins I need.
I guess the one thing that was most frustrating was to convince friends and family I was sick with a disease that doesn't ever let me feel good some days. It's an auto immune disease and I catch colds very easy. Don't come over just cause you don't think you're contagious, stay away if you even cough once. If I catch a cold it might take me 3 months to be back to were I was when I caught the cold. The one person I can thank the most is my husband. He's helped me over the years with his love, understanding and help.
