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I have been teased most of my adult life about having a guardian angel on my shoulder. I must admit that I do have nine lives. I have had several instances of coming within an inch of losing my life. The worst was when a 727 airplane with 150 plus aboard slammed into my neighborhood taking my roof and part of my house. I walked out without a scratch but my next door neighbor and her children were killed. So when I was diagnosed with scleroderma I figured "a piece of cake". Of course I did not realize that my guardian angel was in for a little overtime.
It was around November 1990 that I started having a lot of trouble with my hands. By late December I finally had enough. I made an appointment with my internist. I thought I had carpal tunnel syndrome because I was a legal secretary and did a lot of typing. He told me it was something else and took some tests. He then told me that I had something he felt would be better taken care of by a specialist and sent me to a rheumatologist.
After many tests the rheumatologist diagnosed me with a disease I could not pronounce much less heard anything about. He told me a little about it and gave me informational pamphlets. The medicines he put me on seemed to help, then I got heartburn and reflux. I saw a gastroenterologist and was given more tests and more medicines. Then my kidneys started acting up to the point of speaking about possible dialysis. I was treated aggressively by my nephrologist and they are functioning well again. People gasp when they see the amount of medicines I take, but they keep me going. I have gone to both physical and occupational therapy and have been given exercises to do at home. Moving is important. I do what my doctors and therapists tell me and I am doing well. My pain is controlled but not gone and my skin is minimally involved. I no longer work because I tire easily and have to rest often. I am now on social security which I got on my first try.
I live in a rural community 45 minutes from New Orleans and I feel my "country" internist saved my life by recognizing that what I had was not minor. I have read so many times about doctors treating patients for other than scleroderma and thus robbing them of important treatments in the beginning and worse problems in the long run and shortening their lives.
As I said at the start of my story, my guardian angel is watching over me enabling me to cope. I laugh a lot and enjoy every day that I have. I refuse to be depressed and say "Why me?" I am active in our support group and that helps a lot.
I compare myself to the energizer bunny -- I keep on going and going and going. |
