a brief history, age 12-20

August 25th 2008

The first twelve years of my life were perfectly normal. I was a healthy, athletic, and outgoing girl. I spent every summer at camp. I went on adventurous vacations with my family. I danced and went to Hebrew School. Now, I sit with my best friends as they reminisce about the stupid games they used to play when they were 12 and I remember the awful trips to the doctors that consumed my time. I start to feel sorry for myself and catch myself and remind myself how lucky I am for so many reasons and how adversity has made me a stronger person. I hope that one day I won’t have to give myself this pep talk.

The moment everything changed remains a series of images and anecdotes which I’ve told too many times in numerous doctor offices where I must share my story and watch them listening with their bewildered faces. I have grown skeptical about doctors after suffering from preventable mistakes by these people dressed in coats with degrees saying they will help not hurt me. Fighting to be normal and keep up with my life I endure serious pain throughout my body for weeks at a time. I was misdiagnosed and my family thought I might die, meanwhile I played travel basketball and was one of the stars. I almost feel as though this memory is a lie because I don’t consider myself an athlete at all anymore. I remember how I started asking my team mates to throw the ball softer at me because I was having such difficulty catching. Suddenly my shots couldn’t make it to the basket, my wrists weren’t working the way they once had just days before. I stood on the sideline hiding and praying my coach, my father, wouldn’t make me go in. His look of disapproval and disappointment with my lethargic attitude lingers amidst my recollections.

I was in gym class and we were practicing gymnastics. I was never extremely flexible but all of a sudden I tried to do a summersault and I was unable to do it. I don’t remember feeling panicked or even really confused. It was just happening.

I was in social studies class and we were all sitting in a circle but I could not sit Indian style anymore.

Finally, my mother decided to take me to the doctor for the first time after I couldn’t be bothered to try on a dress she had brought home because “it would take too much effort.”

Shooting a basketball. Doing a summersault. Sitting Indian Style. Putting on a dress.

It happened so fast. But my body continued to change gradually, months became years. I became stiff. My fingers were like claws. Changes so gradual I didn’t even realize some until my mother would tell me to “Open the door normally with my fingers extended not in a fist.” People ask how I coped with it all? I had no choice. The more doctors we visited, the more I felt like I had no say in the decisions being made for my treatment. It didn’t matter what changes I noticed, I was changing beyond my control and felt helpless. I felt alone and isolated from my friends because there was no way I could explain to them what was going on and have them understand any of it. I didn’t even understand.
Eventually I was correctly diagnosed with a rare auto immune disease called Generalized Subcutaneous morphea.

Years have gone by and sometimes I go days forgetting that I have an auto immune disease, especially during the winter when my discolored skin is hidden beneath layers of clothing. I have developed a great respect and admiration for all that I went through and how brave I was through such a difficult period of time. Confronting my worst fear of needles was not an easy task. Waking up for hand therapy appointments at the early hour of 7:30 am before a long day at school and then more appointments in the afternoon was not something I ever looked forward to. I have been to dozens of doctors and tried multiple treatments. I believe my condition has improved and is no longer getting worse but I am not certain at all what lies ahead in my future. I try to take one day at a time because I know that worrying about the unknown won’t help. I don’t hate what the disease has done to me anymore. I don’t feel like a sick patient as I unfortunately have in the past. I’m not a religious person and I don’t trust doctors very much considering how rare my disease is-but I have faith. I believe that a person can control whether they let devastation get the best of them. While I still feel limited in my body I do not dwell on it. Now that my disease isn’t getting worse I have control over my body and am doing everything I can to keep it healthy.


An old diary entry:

I know the pain is only temporary but the minute the doctor says the word needles or shot my heart speeds up and I panic as if someone has just told me someone I loved was dead. I would try to hold the tears back by staring at the ceiling, the floor, and focus on something happy. My leg would kick uncontrollably until I was short of breath and hysterical. I knew my mom felt bad for me a lot of the time but after awhile both my parents grew impatient and looked at me like you know this is not a choice. It didn’t make it any better. On rare occasions I could admit that my anticipation made the pain of the needle far worse than it actually was. Still, most of the time it hurt me so much I cried for a long time after because I could still feel the jabbing and that awful light headed feeling that once caused me to faint. For many months I tried something called Embla cream to lessen the pain. This was the process: in the middle of the night my mom would come into my room and help me put this numbing cream on my inner arm and then wrap my arm in saran wrap. In the morning 5 minutes before I would get blood drawn I would put ice where the cream was and supposedly I felt the needle less. I think it was more a mental relief but it helped at least a little.

In the summer of 2006 I was a counselor for girls ages 8 and 9. While some might think children so young don’t have a filter and might have offended me given my unusual skin I experienced the contrary with most. Even if a few of the girls made faces and worried it was contagious or that they would randomly get such an illness as I did, I cherish the moments in which I was blown away with the girls’ innate sensitivity and gentleness. Especially compared to exchanges I’ve had with older children and adults, these remain memories I hold onto rather than beg to forget. Responding to inquiries has been a process for me in my ability to feel comfortable in my skin. As a camper I remember girls asking me on a soccer tournament what was wrong with my skin and I told them I had been beaten. I don’t remember the tone in which I said this in but it was the only thing I could come up with at the time. Another summer I attempted to wear sweatshirts and sweatpants on the hottest of days and that was no breeze to say the least. I was asked if there was dirt on my skin or if they were bruises. To be accepted and cared about by these sweet young girls felt so refreshing. Their demeanor put me at ease in a scenario that once caused me near panic attacks.

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.