25 years

Hello all I'm Tami,31, from Illinois. Occupation:Xray Tech-Now unable to work
I was diagnosed at age 6 with morphea and linear apparently at that time I was one of the 5th youngest to be diagnosed oh how lucky I was. I had chicken pox really bad and as the last of the pox was beginning to disappear, lesions on my right thigh began. And so, began the journey of the unknown, Scleroderma. I spent a lot of my childhood being sick,catching every cold possible. My lesions began to spread as the years passed by and by high school my legs were covered with "spots",my torso,my arms too. It seemed wherever I went I would catch people starring at my legs and arms,asking questions. It didn't take long for me to have my short line I would tell people when they asked what was wrong with me.
Fast forward to 2003,I had found the job of my dreams ,I had found a new facility to work as an xray tech/mammographer, with co-workers whom were like a 2nd family to me. And my life changed drastically, I began to have such pain in my legs,arms,all over. I tried to hide the pain though deep down there was days I truly wished I would just fall down so I could go home and rest. I began seeing multiple doctors, many of them saying to me "I can't help you,you need to go somewhere else". I began to really dislike doctors alot. Unfortunately, I became even more rare, I had systemic scleroderma,morphea,linear,morphea profundas,GERD,decreased diffusion capacity of the lungs,high blood pressure,etc. Finally, in 2005 my doctor and mother told me I was killing myself by continuing to work. At 27 yrs old I became "disabled" and let me tell you what a battle to go through the tons of paperwork trying to get social security to approve my disability.
Now it seems like everyday my health gets a little worse, from the pain,the frustration,nausea, it makes it harder and harder to accomplish the simple things in life. I have to plan ahead for any type of activities, say grocery shopping I have to rest the entire day before and then 3 days later I am still recovering from being exhausted from buying groceries. I have to decide if a certain activity is worth the pain.
I have to say the worst part of being ill is that no one understands. They don't get why I have to stop and sit in order to keep going,why there are days I just can't muster the strength to walk out the door,or why I can't "hang out" anymore. I do know that scleroderma has shown me whom are my true friends, the friends that understand somewhat and do not get mad if I have to cancel plans. I have lost most of my "friends" because of being ill but I thank God every day for those I still have, for my mom whom understands and cares,for the internet to allow me to meet others like me whom understand.

I cant imagine my life without scleroderma for this is the only life I know. I know that this has made me stronger mentally,given me the ability to have empathy for others,to not get so upset over the small things in life, to stop and smell the roses,to appreciate every day I see the sun rising and the sun setting. For, I have lived another day and can only hope that as technology grows so might a cure for scleroderma.