| This may be very hard for me to write because I really do not know the beginning of this story. I will try to piece together the things I remember and when it all started and where I am now. So please be patient with me through this difficult time. I don't remember any thing out of the ordinary in my early life. I married the man of my dreams, had children, lived a very good life. I felt my life was perfect, I was happy raising my children, going to church, and helping in the schools the kids went to and doing community work. My husband was in the Navy and was gone a lot but we were totally military and accepted that was his job. We retired in 1980 and settled in Oklahoma where our children married. I remember when I started some of my symptoms, like sweating on just my face, my Doctor said it was just my hormones. I finally went to a dermatologist for it and he gave me Robinal for it and it seemed to help some. About 10 years ago I was diagnosed as having diabetes and was put on medication. Then a few months later I burned my hand and went to the ER and my blood pressure was very, very high. So I was put on medication for that. In 1979 I had surgery for a tumor on an ovary that was very large and the Dr. said I had a lot of scar tissue that had to be removed from a previous surgery. I have had around 9 major surgerys and about that many to remove scar tissue. I also started noticing that my legs and feet were always purple. I thought that it was because they were cold. The Doctor said I had poor circulation. Then my hands stared turning purple and they burned. I also had very dry skin and was forever putting lotion on and bathing in baby oil to keep my skin soft, but It only helped for a day. In October I hurt my back and was told I had 2 herniated disc's. I did therapy, water exercises, had steriod injections, several selective nerve blocks, then back to steriod injections.I had 5 Doctors at that time and each said I needed surgery but with diabetes and the complications that could arise they didn't reccomend surgery but wanted to put in a device to manage the pain. Thats when I noticed all the changes that were going on. The injections lasted about a week and I was pain free but after that it got worse. My legs hurt so bad I could not stand anything to touch them. It got to where it was hard to walk for more than 10 minutes. Then my legs started swelling so bad I couldn't stand. I was put on Lasix and that didn't help, I was told to stay off my feet and that didn't help. My diabetes went totally out of control and I was taking 16 pills a day for it and insulin. My Diabetic Doctor kept saying I was doing something wrong, either eating what I wasn't supposed to or something. I started gaining weight, again I wasn't eating right. I kept telling him I wasn't doing anything different. I was tired all the time, he said I needed to exercise more. I want to say I was always active. I loved cleaning my house, painting, working in the yard and my son had built me 3 garden ponds and I loved taking care of them. That in itself is a full time job. Well by then I was so frustrated and I thought maybe I was just imagining things. When you are told you are healthy except for diabetes and high blood pressure and you need to eat right and exercise, well I thought I was complaining to much. My feet and legs were still swollen and finally the Doctor started doing tests. Finally he said he wanted me to see a rheumatologist. I was pretty confused, why a rheumatology Dr. I have arthritis but never took anything for it. I was tired of all the referrals and spending so much time and money on different doctors. This was my 5 th Doctor and I thought if I don't get some answers I'm just going to forget how bad I feel. Then, there is your family wondering whats wrong because you are tired all the time and the Doctor can't find anything wrong. Well I went for my appointment and right away I was on guard with this new Doctor. He was very matter of fact about every thing. He examined me and then took out a notebook and started asking me questions. He asked me questions about 20 years back and expected an answer! When I said I didn't know, he said "think" well I was thinking and was getting madder each question he asked. After 3 hours of his interrogation I knew I had to eat or pass out so I told him I needed to eat something because I was diabetic. Well he left the room and came back with a brownie and a soda, and the questions kept coming. After he was done he ordered a series of tests and said he wanted me to see a cardiologist because I was having some chest pains. You can imagine what I was thinking! He also wanted the test done, "right now." Well needless to say I left his office in a huff. Well they made me an appointment with a cardiologist for the next day and I was thinking they were nuts. I saw the Doctor the next day and right away he did an ekg and a ultra sound of my heart right in the office. Then he came in and said he had scheduled me for an angiogram for 4 days later. As I left his office I was thinking, well here goes about $5000, down the drain. Well the day came and I went in for the angiogram and he explained what he would do and that it probably would be very unconfrontable. After it was over he said he had put a stint in and explained that I had some blockage but not real bad. I needed to take it easy for 4 months so it would heal right. He also said I had pulmonary hypertension. I was put on a new medication for my heart because he said the pain was caused from spasms in my heart. Needless to say I came home and was in bed several days. That wasn't a problem because I was so tired all the time anyway and spent a lot of time resting. About a week later I went back to the rheumatologist. He was very brief. He said you have scleroderma, you evidently have had it a long time because your symptoms and the tests show you are in the final stages. There is no cure and no medication that has been proven to work!! Make an appointment for 2 months and thats it!!! |
