My journey – Bravelets

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My journey

Posted on November 10 2014

My journey
In 1995 I was diagnosed with Lupus. Me being an avid reader, I headed straight to the local library. The books I got from the library all said the same thing, Lupus basically was fatal, with a 5 year life expectancy. What was I going to tell my children, my parents? My husband at the time and I were not getting along very well. I had suspected he was having an affair. He was getting very annoyed with all the doctors I had been to over the course of trying to find out what was wrong with me. I had been called a hypochondriac, by him. I know many doctors had thought the same. But I knew something was wrong, something more than just a few aches and pains. It took the knowledge of my orthopedic to suggest I be tested for Lupus. This mystery illness I had never heard of, which was soon going to become a big part of who I was. Fast forward a few years, yes, I survived the 5 year life expectancy. As such, the books were all outdated, as were all the medications that were being used to treat this illness. No new drug had been introduced to treat this illness in over 50 some odd years. I was placed on the only medications they knew to place me on at the time. I managed on these with a few adjustments, as Lupus can make you reject them, become allergic to them or just not work for your symptoms at all. I ran through the whole gamut of pain medications possible over the next few years. Other medications were added as other symptoms arose. Basically that is the only way to treat this illness, treat the symptoms. After a very rough divorce I moved on and re-engaged into life. I starting working. Met a new man. After 1 1/2 years we were married. I continued to work until my illness took a toll on me and started to affect my central nervous system. My thought processes were getting jumbled. I was getting things mixed up. I could no longer keep up at work. I was finally fired after 4 1/2 years at the job that I truly loved. I was helping people, which I love to do. Then I knew I was going to have to find something to still help out with the bills. I contacted a temporary employment office and they put me to work right away. I was working on a pretty regular basis. I kept that up until I got laid off 2 more times for lack of work. I had decided to file for disability. There was no way I could continue to do this. I went to all of my appointments they set up for me. Sent in all their paperwork. Then my 85 year old dad had a stroke. I needed to be by his side. He lived 500 miles away. I spent 6 months taking care of him and my mother. While I was out of town taking care of my parents, I was approved for my disability. I had gotten it on my own!! While I was out of town I discovered I was low in potassium and now had Stage 3 kidney disease. I now needed to take care of myself. I headed back home. I am doing better now and my condition is stable. I have learned so much along my journey. I have decided that I would take the knowledge that I had obtained over the years through reading and research to help other patients like myself. I have joined forces with Patients Like Me and Molly's Fund Fighting Lupus. I am a support group facilitator for Molly's Fund and also learn a great deal from Patients Like Me while volunteering my information to them to help doctors better serve patients. I am now an advocate for Lupus.
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