In 1999, I was diagnosed with an autoimmune illness called Scleroderma. It is not contagious but it is believed that it is hereditary. It wasn’t long ago that it would have been a death sentence. There are different levels of severity. I was fortunate enough (if one can really call it that) to only have the milder form.
Since my diagnoses, I have done my best to travel once a year to participate in a research study being conducted at UTMB Galveston to find a cure. It has not always been easy to drive two hours one way to participate in the program. When I was living in Austin, I actually drove more than four hours one way.
I am hoping that the sacrifices that I and others make for this research project will some day spare someone else from having Scleroderma or at the very least improve their quality of life. Many similar studies are being conducted all over the world.
Now, I will explain a little on Scleroderma but if you want to learn more about it just simply click on any of the blue words. They will connect you to varying web sites containing detailed information on the subject.
Scleroderma basically means the hardening of the skin. Our bodies over produce collagen which is seen as the enemy that needs to be attacked. How ironic that what thousands, maybe millions of people pay tons of money for is naturally over produced by people with Scleroderma.
As with many illnesses, we do need to take some daily medication to keep the symptoms of Scleroderma under control. Some may have certain limitations but they simply have learned to do modifications.
I still remember the doctor telling me. “Well, I have some good news and some bad news, which one would you like first?” I told her, to just give me the bad news first. Now, remember that I was 30 years old when I was diagnosed. She said, “well it is good that you were blessed with two sons.
Eventhough you can still get pregnant, I would not recommend it. The medication that you will be on is very toxic for a fetus. If you do get pregnant the fetus could have severe birth defects. You could have a miscarriage. If and that is a very if you could carry the pregnancy several months, you and the baby could still die before giving birth.”
I asked, what is the good news? "Because of the tighting of the skin associated with Scleroderma, you will be eternally young. You will never look your age." I was stunned even further by her words. Talk about aging gracefully.
That’s right people. I have discovered the fountain of youth. No, that’s not right. The fountain of youth discovered me. Just like in those tragic movies in which the main characters discover the fountain of youth only to find pain, sorrow, and great tragedy. Life is so ironic.
Once, the doctor left, I wept. For you see, I had always wanted three children and it is why I never had the surgery to close the baby factory so long ago. I had no idea then that it was only the beginning of many struggles and disapointments to come. All I did was be born and my only inheritance was to be Scleroderma.
In December of 1999 I was to spend the New Year all alone in an empty, dreary and cold room. I had no choice, I was lucky not to end up in ICU. All, I could think of was that I needed to be released before my sons returned from spending the holidays with their father. I did not want them to know that I was in the hospital. Why worry them so needlessly.
After about a week of me bugging the doctors every day to set me free. She finally released me under one condition. For the next several years, I was to drive to Galveston once a month to ensure that I received treatment. At that point, I would have sold my soul, just to get home for my sons.
My poor mother drove two hours to come and get me. It was one of the longest drives that I have ever taken. My dearest mom didn’t know what to say or do. Memo to self: hug your mom and tell her that you love her more often. Especially when she is driving you crazy (which is often). :o)
It has been many years now and what could have killed me has only made me stronger. I have used a negative and turned it into a positive. I decided in that hospital room that I was going to fight back full force my enemy Scleroderma.
I became my own advocate and learned as much about it as I could. I refused to roll over and play possum (dead). After, all I have two sons that love and need me. I had to find the strength within me if only for my sons.
Well, every time I see my doctor I simply amaze her. Actually, this time she amazed me. In all the years that I have gone, it was the first time that she actually hugged me. She was that happy to see me again. According to her, I am the only right handed participant in her study. Which throws a wrench into a couple of hypothesis on Scleroderma. What can I say, I am unique. LOL
Contrary to some people's beliefs Scleroderma has not affected my mind. I have never been more focused. So much so that I earned an Associate in Real Estate and a Bachelor of Science in Interdisciplinary Studies. I also, passed three difficult State of Texas exams this past year.
I love life and no matter where my path leads; I will do my best to overcome whatever obstacles may come my way. I also, learned that no one defines, who I am. I define who I am meant to be. I am ready to be the woman that I meant to be...........:o)
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