Midnightrider
Serious Thumper
   
Offline

Alliance Member
Posts: 3244
Winston Salem, NC
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Babyhog my major symptoms are rash, swelling of joints in my hands, swelling of feet, fever, fatigue,and depression, I've lost almost half my body strength, other than that I'm fine LOL. The only treatment that helped me were steroids but I stopped taking them for long term health reasons. The hardest thing to accept is how much Lupus changed my lifestyle. When I quit drinking and drugging almost 15 years ago I became one of these people who was always wide open. I worked a full time job, played in a sucessful working band, rode and worked on other peoples motorcycles. I had 2 speeds, wide open and asleep. My music was a major part of my life, I was good at it and I loved it. I've opened for the Allman Brothers and Jimmy Buffet. My last bands website is still up, you can hear me play at bagbrothers.net Lupus pretty much has taken away my music, when I play my hands start swelling. That hurts the most plus the fact I lost a $75,000 a year job. Physically I can do less than a fourth of what I was able to do before Lupus. Back in 2002 I became a member of the Iron Butt ascociation. The Iron Butt Ascociation are the worlds toughest long distance motorcycle riders. For my initiation I left Winston Salem and rode to Daytona, ate a hot dog and headed back home only stopping for gas. The trip was 1126 miles and I did it in 18 and 1/2 hours on a Triumph Trophy 1200. Now I'm not strong enough to hold a motorcycle that size up. Whatever I did I was passionate about it and strived to be the best I could be. Some days now its all I can do to get out of bed. But there are a lot of people a lot worse off than I am, I try every day to focus on what I can do. I can still ride a smaller lighter motorcycle, not near as far as I use to but I have done three 400 mile days in the last year. Now that I've found out I can ride a bicycle I'm riding all I can, just got in from a 21 mile bike ride. I have a great wife and two wonderful kids so theres still a lot left in this world to be grateful for. It will soon be two years now I've been living with Lupus. Each day it gets a little easier to accept it and some of the passion for life is coming back, I can no longer do a 1000 mile day on a mtorcycle but if I work a little harder I bet I can do a 100 mile day on a bicycle, so far my longest bicycle ride is 47 miles. HMMM, got a little more work to do but I'll get there. Life, ya gotta love it.
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