Learning to Let Go of the Past and Live With Scleroderma
There are days that I can breeze through life. Days when everything comes so easily – no fuss, no muss, no pain, no fatigue. Those kinds of days give me hope for the future and hope that maybe living with systemic scleroderma can be manageable and won’t always be so hard.
I have been living with a rare chronic illness called systemic scleroderma since my 19th birthday 16 years ago. Living with this disease has not always been easy, nor has it been consistent. Systemic scleroderma is an autoimmune disease that causes an overproduction of collagen in the body. It also causes the body to fight against itself, causing damage to the inside of the body (heart, lungs, GI , kidneys, blood vessels and liver) and causes the outside of the body, mainly the skin, to become stiff, hard and constricted. As you can probably assume, it’s not always “a beautiful day in my neighborhood” having to live my life with a body that has a complete mind of its own and doesn’t always play fair.
When I was first diagnosed I knew nothing about what scleroderma was or what symptoms were common. Back then there was not a ton of educational information about scleroderma at all! The only information I could find was that it was a rare disease that affects mostly women ages 45 and up. It was a disease with no origin and no cure, and the life expectancy was 10 years after diagnosis. Which meant it was a fatal disease. When I think back to the original shock I felt when I read that not only was the disease I had been diagnosed with incurable but also fatal, it still leaves a hollow pit in the bottom of my stomach.
That was a hard pill to swallow at the young age of only 19. My life had just started. I was only in my second semester of college, for pete’s sake. I felt some reassurance when I found UPMC (University of Pittsburgh Medical Center) shortly after being diagnosed. This center was the top scleroderma clinic in the country. When I went for my original consultation there, I was in awe at how informed and knowledgeable not just the specialists were, but the entire medical staff, including the medical assistants and the front office staff. They knew so many things, my brain was in information overload at all of the new information and tips I learned from just visiting the center for only one day! I left there two days later feeling better about my outcome living with scleroderma and like I was more educated and prepared for the long journey I knew was to come battling this disease.
However, just because I was more knowledgeable about what it was to have scleroderma did not mean I was actually prepared for all of the changes that were occurring to not just my body but my emotions, my self-confidence and my outlook on my life in general. It took me a long time to come to terms with the fact that living with scleroderma comes with a lot of baggage. Doctor appointments two to three times a week, tests, blood work, surgical procedures… and that was just a taste of what I had to go through to stay on top of this disease and make sure I was doing everything possible to keep my body as healthy as I could. The “struggle was definitely real,” and those weren’t the only things I had to deal with. I also had to process the reality of having to let go of things in my life that were really important to me and I really did not have a say in the decision -making process.
Scleroderma made those decisions for me and it was not an easy thing to have to let go of goals that were extremely important to me. For example, my job was a big part of who I was at that time of my life. I was 23 years old and I had to give up having a career and the ability to advance in my position and make my own living and if that wasn’t crushing in itself I also had to give up school and my goal to get an education and become a registered nurse. Those two things back to back were devastating to me and life after that was hard to bear. “Who was I supposed to be without a job or an education?” “How was I going to support myself and pay my bills without any form of income?” As it was I had over $200 extra a month added on to my monthly income just in medical bills and prescriptions. “How was I going to survive?”
Finding myself and learning how to pick up the pieces of my broken existence was not an easy feat. It took me something like five to six years to come to terms with my life after scleroderma and that all of my dreams and goals I once had set out for myself were not to be. During that time it was more important for me to stay healthy and alive than it was to figure out what my goals were for the future. That time period of my life was hard for me healthwise. I was having a lot of physical problems, especially with my breathing and my skin and I was in and out of the doctor’s office daily and had test after test and more surgical procedures than I could even count. If I did not have the love and constant support from my parents and my sibling, I don’t know if I would have had such a positive attitude about everything I was going through, but eventually I got through it and my disease started to settle down and I was able to focus on my life and the things I wanted for myself and the steps I needed to take to get there.
Scleroderma is not a disease you can ever get a grasp on and be in control of the outcomes on your body or your health. It is a roller coaster of ups and downs and for me it never seems to cut me any slack. But I wasn’t going to let this disease control me or the way I wanted to live my life any longer. So I decided to stop trying to control my disease and start living the life I was given and allowing myself to make memories and have fun. Even though there are a lot of things I can’t do like go ice skating, or scuba diving, or rock climbing, there are so many other things I can achieve and so many places in the world I want to see.
With that thought, I started a bucket list of all the things I wanted to accomplish in my lifetime. It wasn’t like your typical bucket list filled with amazing vacation spots and adventures and once in a lifetime experiences you want to fulfill. My list was more of a list of goals I wanted to accomplish for myself. Some were small, like complete a 5K or give a speech to the patients at the National Conference. I also included some bigger goals like being a board member of the Scleroderma Tri -State Chapter and to have an article be published in the New York Times.
It didn’t take long to fill up my paper with about 75 goals I wanted to achieve in my lifetime, but now that I had given myself a purpose, it still wasn’t enough for me. I needed to give back, I needed to try to help others like me who were out there in this world living with scleroderma and didn’t have the first clue about what it was or how to get treatment. I knew from my personal experiences and all of the hardships I endured I could relate to others, especially younger patients who were having a hard time living with this disease and struggling to come to terms with all of the sacrifices scleroderma demands from you.
So I started my online support group, the Scleroderma Super Starz, with a little help from the Scleroderma Tri-State Chapter, and it just took off! Only six months later I had almost 2000 members nationally and internationally. It was amazing. I am so proud of all my members for trusting me with their stories and deciding to join and not being afraid to ask for help! It took me a long time to reach out to fellow patients and I am so honored at my Super Starz, some of whom are newly diagnosed and already reaching out for help! That makes me so happy.
Without the group I don’t know if I could say I am happy at this point and time in my life and I am excited for the future and the opportunities to come. Being an advocate is now my career and my purpose in life. Even though it’s not a paying job, it’s definitely something I take pride in and something I will continue to do as long as I am able to do so!
I am not going to ever sugarcoat things; living with scleroderma is definitely hard and overwhelming and at times unbearable, but I will never give up on myself or my scleroderma family. Even at times when I am at my lowest and everything seems too hard and I feel not strong enough to get through – and believe me, there are times like that – I have learned that by focusing less on the things I cannot control and more on the things I can control, like my attitude and taking my pills and going to all of my doctors appointments and knowing when to lean on my support system, I can get through anything if I just set my mind to it.
That is what I intend to show others living with scleroderma – that yes! It is hard, and yes! Sometimes you might feel like you want to call it quits, but there is always a way to push forward and there are so many things in life worth fighting for and your life is one of the most important things on that list!!
Scleroderma is a rare chronic disease I was diagnosed with 16 years ago and it has totally and completely changed my entire life. Some ways for the good and some ways for the not so good, but nonetheless, my life is forever changed and it took me some time to adjust to all of the changes that scleroderma had made to my health and to me emotionally and spiritually. But I made it through and even though my life may not be everything I envisioned, it is my life and it is precious and amazing and mine!
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