Staying Alive with Scleroderma
State: New York
Congressional District: NY22
Immune Disease, Lung Disease, Rare Disease
Issues and Challenges
Amy has encountered: Rare / Underserved Disease, Discrimination (nonmedical), Invisible Illness, Underserved Community
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 it won’t always be so hard.
I have been living with a Rare Chronic Illness called Systemic Scleroderma since my 19th Birthday, 20 years ago. Living with this disease has not always been easy, nor has it been consistent.There are days I wish I wouldn’t wake up, and days I literally can not get out of bed because I am in so much pain. As you can probably assume it’s not always “A beautiful day in my neighbourhood” 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 in 2001, there was not a ton of educational information about Scleroderma at all. The only information that 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 that I felt when I read that not only was it incurable but also fatal, it still leaves a hollow pit in my stomach. That was a heavy pill to swallow at the young age of only 19. My life had just started. I knew next to nothing about myself,or being an adult in the world today.
I felt some reassurance when I found UPMC (University of Pittsburgh Medical Center). 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, I was in an information overload at all of the knowledge and tips I learned from just my first day visiting the Center. I left there two days later feeling more educated and prepared for the long journey that 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 Scleroderma and all its baggage. Doctors appointments two to three times a week, tests, bloodwork, 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 that wasn't the only thing 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 that I really did not have a say in the decision making. Scleroderma made those decisions for me.
It was not an easy thing to have to let go of things that were extremely paramond in my daily life. For example, my job as medical secertsry 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 my goal to get an education and become a Registered Nurse. Those two things back to back were devastating to me.All of my life I had wanted to be able to help other people and now with scleroderma that opportunity was being taken away from me without my consent. It made me so angry! 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 added over $200 extra a month just in medical bills and prescriptions. How was I going to survive? How was I going to continue to be my authentic self, with a big part of my identity stolen from me?
It took me something like 5-6 years to come to terms with my life after Scleroderma. 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. 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 siblings I don’t know if I would have had such a positive attitude about everything that I was going through. My family was my rock and the one thing in my life that stayed constant, for me that was a blessing and something I really needed at that time. 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. With my family behind me I started to rethink my goals and how to achieve them in a different way.
Scleroderma is a roller coaster of ups and downs and for me it never seems to cut me any slack. For over 12 years I lived constantly fearing what was to come and really not embracing my life that I had left and what joy I could get out of it, But I wasn't going to let this disease control me any longer or the way I wanted to live my life. So I decided to stop trying to control my disease and start living the life that 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 that I can achieve and so many places in the world I want to see, and with that thought I started a bucket list of all of the things I wanted to accomplish in my lifetime. It wasn't like your typical Bucket - My list was more of a list of goals I wanted to accomplish for myself . Some were small like completing a 5K or giving a speech to the patients at the National Conference. I also included some bigger goals like to be 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 that I wanted to achieve in my lifetime and now I had given myself a purpose, but it still wasn’t enough for me.
I needed to give back and I needed to try to help others 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, like I had been. I knew from all I endured I could relate to others, especially younger patients who would have a hard time living with this disease and struggle to come to terms with all of the sacrifices that Scleroderma would demand from them. So I started my online Facebook group called the Scleroderma Super Starz and it just took off! Only 6 months later I had almost 2000 members nationally and Internationally. From there my group morphed into a virtual support group that meets bi monthly called SYNC (Scleroderma Young Adults Needing Connection) and I have also incorporated moderating young adult panels for the Scleroderma National Foundation. It's amazing I am so proud of all of 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 proud of my Super Starz, some of whom are newly diagnosed and already reaching out for help! That makes me so happy. Being an Advocate is now my career and my purpose in life and 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! In the past five years I have added Keynote Speaker, and published authors to my advocate resume. I have also checked off a few things on my Bucklist, like becoming a TriState Scleroderma Chapter Board Member, and becoming a speaker for the National Foundation Conference.
I am not going to ever sugar coat things. Living with Scleroderma is definitely hard and at times unbearable, but I will never give up on myself or my Scleroderma family. I have learned that focusing less on the things that are out of my control and more on the things I can control, like my attitude and knowing when to lean on my support system, I can get through anything. 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 things in life worth fighting for and your life is one of the most important things on that list!!
My Motivation and Inspiration
My motivation for doing what I do is always helping other people living with an illness like myself, realize their strengths and abilities. I want them to reach all of their goals in spite of living with a debilitating disease.