Because I have a very extreme case of Scleroderma and I look so different than the average person, people often wonder what’s wrong with me and sometimes they ask. When I tell them "Scleroderma" their first response is "What?". When I was 27 years old I was living in Mobile and I had a pretty good life. It was fun and I looked forward to every day. I was teaching third grade at a great school. I had lots of friends. I had a lot of interests and hobbies. And, I had a ton of energy. I worked out at a gym two days a week just to stay healthy. In the fall and winter I loved to canoe, camp and tromp around in the woods. In the spring and summer, I was a beach girl. I also loved to fish the Mobile Delta and the Gulf of Mexico. My passion was any kind of art or craft project. I enjoyed cooking. I had a nice camera and I worked on my photography skills. I was learning how to call turkeys. And I could out throw most of my friends with a Frisbee. These were things I loved to do and were so much a part of my life and who I was. These are some of the things Scleroderma took away from me.
It was during the summer on my much deserved break from teaching kids when I woke up one morning and both of my knees were really hurting me. From that day on, my life began changing drastically. The pain in my knees never let up and moved down my legs to my Achilles tendons. It hurt to walk and with my knees so inflamed it was hard to get up from a chair. Finally, after multiple doctor visits, a rheumatologist gave me the news. I had Scleroderma.
I remember the last game of tennis doubles I played with my girlfriends. Every time the ball hit my racket, pain seared through my hand. When I walked off the court I knew I would never play again. The last time I went fishing I couldn’t really grasp the rod. I laid it down in the boat. I didn’t want to cast my favorite rod and reel overboard. I jumped off the end of a pier one day and thought I would drown before I could make it back to the ladder. I had not realized how tight the skin had become under my arms and across my shoulders. I couldn’t swim anymore. My hips and thighs became too tight to walk up stairs or take big steps. Hiking, canoeing and camping were out.
I had to quit teaching school. I worked at a less physically demanding job for a couple of years until I was no longer able to dress myself in the mornings or drive myself to work. I had never been a depressed type person but this was a very hard time in my life.
The disease progressed rapidly. Every day there was something new to deal with. The pain spread to more and more parts of my body. Eventually, it got to the point that if someone just bumped me, it would bring tears to my eyes. I developed multiple ulcers on my fingers, toes and down my back. It was not unusual to have 30-40 ulcers at a time. As the skin tightened it itched and burned. My hands were so swollen and inflamed most people thought I had been burned. As my jaw receded my teeth became loose and I had trouble eating. My esophagus became so small I could hardly swallow. My face had changed so drastically, I scared little children. People I knew didn’t recognize me. My thick wavy hair was thin and scraggly. I couldn’t brush it. I couldn’t bathe myself, dress myself or feed myself. I couldn’t get in or out of the bed without help. I got to where I was too weak to do any arts and crafts. I couldn’t even sign my name. I was very sick.
My family and I thought I was dying. I felt like I was dying. But one day as I lay in the bed, I got a message from God. I didn’t hear Him speak to me but I just knew at that moment that I wasn’t going to die. Not right then anyhow. It had been about six years since I had been diagnosed but from that day forward I began to get better. From that day on I knew I wasn’t going to die from Scleroderma, I was going to live with Scleroderma.
I’m not telling you all this to make you feel sorry for me. I have already felt sorry for me and I’m over that. I’m telling you this to help you understand what an ugly and devastating disease this is. I’m one of the lucky ones. Many victims die within the first 5 years. I’ve had Scleroderma for over 27 years.
And today, once again, I’m living a pretty good life. Even though I am in many ways healthier than I was years ago, Scleroderma is a chronic progressive disease and I still fight it today. But, I look forward to every day. I’m part of a big wonderful family and I have many true friends. I am blessed with great helpers who take good care of me. I can walk around my house without a wheelchair. I can draw and paint. I can type on the computer and occasionally I can feed myself. Life is good.