Today is June 1. It starts the beginning of Scleroderma Awareness Month. Scleroderma, in my words, is the badass (not in a good way) cousin of lupus (which I also have) and rheumatoid arthritis. The official definition is: Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. Check out the link below for more info.
I was diagnosed in 1983 (but prob had it in ’82 or ’81) and was given less than a year to live. Do the math. That’s 31 years. I’ve exceeded all expectations. I’ve lived longer than at least one of the diagnosing docs. I’ve lived longer than all of the projections of the books, and the predictions of the experts. But I knew I would.
It’s been a helluva ride with this disease. But I’m a stubborn s.o.b. and I’ve refused to give in. I try to keep things in perspective and know that, no matter how bad it gets, no matter how much I hurt (which is all the time), there are others who have it worse. I will never forget that moment when I sat across from an 8 yr old girl during a chemo treatment. It was my first time doing cytoxan and I was down, cause, I mean, it WAS chemo, and that always (to me) meant the beginning of the end. But it wasn’t this little girl’s first trip nor would it be her last. She kept everyone smiling with her infectious attitude. You could not help but join in. She was just sooo upbeat! I made the decision then that, if this little girl (who had cancer), could pull some positive stuff out of this horrible experience, then, I could too. I’ve never felt sorry for myself or had a “woe is me” moment since. I’ve never forgotten that little girl or the lesson I learned that day
Looking at me, you can’t tell there is anything wrong unless you look at my hands. If you ever see me, you can ask to look at them. I’m not shy. Come on and get a massage from me, choicemassage.biz. You will not be able to tell that my hands are like they are. The rest of my stuff is internal: muscle weakness, joint pain, kidney involvement, lungs and gastro problems, heart (heart attack in 2000) complications. Fatigue is an overwhelming, non-compassionate companion. I’ve had chemo 3 different times and I should have had a 4th, but I refused because I didn’t want to go thru it again at that moment. Good decision. And I’m still here.
Learning coping skills helps keep things on the good side. In Utah, hiking and snowshoeing helped me fight back. Here in Texas, I am a retired cyclist (cause I don’t have a bike). I work out with weights. I garden. I love love to cook (ask about my gumbo or salsa or ribs). I collect old books. I have coffee and the paper with Trudy in the morning. In fact, my wife Trudy is my not-so-secret drug that has reawakened my zest for life. We sit on the back porch and have a drink at night. We do a lot of things together. I see my kids,grandkids, family and friends when I can. I won’t lie. Not every day is a good day. I have ups and I have downs too, just like everyone. But learning how to handle this roller coaster of a ride has to be done in order to survive and I hope I have more ups than downs.
I wouldn’t change anything in my life. Going thru the hardships and the fights and the health battles has shown me that I am a stronger person than I ever knew. I have done some amazing things because of scleroderma. One example…in 1993, I rode a bicycle from Houston to Dearborn Michigan (site of that year’s convention) as a fundraiser and PR campaign. I rode by myself with a support van following. To say it was epic would be an understatement. I still toy with the idea of doing another one someday. What with social media and all, it could very well become a bucket list item.
So there it is. As you can tell, I like to talk. I will talk to you about this disease. I will answer any questions. Just ask. June is Scleroderma Awareness Month, but I am aware of it everyday.
Here is the website I mentioned: http://www.scleroderma.org