Why I Feel Lucky Despite My Battle With Scleroderma
I have spent the majority of my adult life sick. When I say sick I am not speaking about a common cold or even appendicitis. My last year as a teenager I was diagnosed with a rare, chronic, autoimmune disease called systemic scleroderma. Scleroderma is an autoimmune disease that affects the skin and internal organs. It also causes hardening and thickening of the skin and major organs. Scleroderma has no know cure.
Being told as a late teen that you have a debilitating, most likely terminal illness that has no known origin or cure was more than a shock. It was like I was pushed in front of a moving train. Following my initial diagnosis, I had a series of tests and procedure. It started with routine blood work and a chest x-ray. The blood work was to check to be 100 percent sure that I indeed have scleroderma. You would think they would have done this blood work prior to telling me I had this rare, debilitating disease, but hey, I’m not the person with the MD, so what do I know?
They do a blood test to check your ANA. ANA stands for antinuclear antibodies. 95 percent of patients with scleroderma have elevated ANA levels in their blood stream. I was also told I need to do a PFT (pulmonary function test) and a chest x-ray. Those two tests are tests that check your lung function and they check to see if there is any scarring on the lungs or pulmonary fibrosis yet. Lastly I had to have a barium swallow test done. This test is to check your esophagus and mouth and also to evaluate your ability to swallow in different physical positions.
Of course I was hoping all of these tests would come back completely fine and my diagnosis would just be a big mistake! Unfortunately for me, that did not happen in the slightest. My ANA was positive with high levels, my PFT was abnormal for a woman my age and my chest x-ray showed the start of scarring around the outer edges of both of my lungs! All bets were off. It was 100 percent true: I had systemic scleroderma and there was nothing I could do to make it disappear.
”How could this be happening?” I was a healthy, active, young woman. ”What did I do wrong to develop this disease?” Those questions and about a hundred more would race through my mind on a daily basis. I could not go on with my life living in the dark. I wanted some answers!
About a month after my diagnosis I hit the books hard! I wanted/needed to know everything I could about this disease that by now was affecting the skin on my face, my hands and fingers, my lungs, my throat and how I swallowed and ate food. I wasn’t going to just let this disease take me for a wild ride. If I was going to be living with scleroderma, I most certainly wanted to be in the driver’s seat controlling the speed and direction of this disease and how it would ultimately affect me both emotionally and physically. But there was absolutely not a thing regarding scleroderma and how it is treated on the internet!
The most I could find was about two sentences basically stating that scleroderma was a very rare disease that means “hard skin” and is mostly found in women in their late 40s and is terminal. Wow. I could not believe my eyes. I could not find anything, no treatment options, no research, not even a clinic locally I could go for treatment. This went on for about one week. I was determined to find something, anything factual about scleroderma. Most importantly I needed to find somewhere in the US where they treated this disease and could help me, because locally I could not find a single soul that could even spell it correctly, let alone prescribe me medications and order tests.
My current doctor was good, but he only saw elderly women with scleroderma and his way of treating this disease was to treat me symptomatically. Which, do not get me wrong, is a great way to treat patients; however, I was a 20-year-old woman by then and I wanted to stop progression, not just be treated when I had a symptom.
By the end of the seventh day of my failed attempt at research, I was ready to give up entirely. Then I came across a hospital located in Pittsburgh, Pennsylvania. At this hospital was a doctor who specifically specialized in scleroderma and scleroderma research for over 40 years! I had literally found the medical jackpot. Let’s just say after that, the rest is history.
Fast forward about 15 years later I am still going to see that doctor I found in Pittsburgh and I am still researching and learning about scleroderma and what I can do as a patient to have the best quality of life possible. 16 years total is a long time to be living with systemic scleroderma and as bizarre as it may sound, I consider myself pretty lucky to have made it this far.
Why, you ask? Scleroderma can very well be a deadly disease and even though I have limited hand, finger and wrist motion, arthritis and stiffness daily, difficulty walking, bending, kneeling and, for the most part, moving, along with pulmonary fibrosis, heart palpitations, dry eyes and mouth, acid reflux, gastroesophageal reflux disease (GERD), CREST disease and Raynauds phenomenon, I most definitely consider myself lucky. For starters, it definitely could and may very well be much, much worse symptom-wise and, to be frank, I could have very well not even have been alive right now to be writing this for all of you to read.
I have found with this disease you have to take the good with the bad, and a positive attitude and outlook on your life goes a long way. I can’t change what has become of my life or go back and erase being diagnosed with scleroderma, and honestly, I really don’t think if I had the opportunity to I would! I have learned so much about myself that had I not been diagnosed with this disease I don’t think I would have ever known. I have met some truly amazing and inspiring men, women and children over the years, whose lives have touched mine and have forever changed my heart. I have been afforded some incredible opportunities to travel and advocate about this disease and to me, being able to share my passion for educating and raising awareness about scleroderma has really changed and shaped me into the strong, capable, passionate person I am today.
For those of you reading this who are newly diagnosed and scared out of your mind, who are alone and struggling to live in constant pain and have no support system, or even for those of you who are 100 percent healthy and just reading this article to pass the time, we all are given moments in our lives when we have a choice to make, a choice that can change our lives for better or worse. Most of us will choose life for the better. Living my life with scleroderma wasn’t a choice I got to make and it most certainly was not the kind of choice you would think would change your life for the better, but in my case that is exactly what happened.
Scleroderma has exposed all of my insecurities and my weaknesses and forced me to face my mortality. Scleroderma has given me a new outlook on my life and taught me to savor the time and the people in my life I love and care about and to live in the now. Although I am faced with obstacles daily that try to break my spirit, I will not let this disease dictate my life path and the stops I make on the way. I might have to take a few more stops than I would have liked to, but life is all about rolling with the punches and making the most out of the life you are given, and that is just what I intend to do – and a hell of a lot more!
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