Dear Scleroderma: You Will Not Dictate How I Live My Life

Dear scleroderma,

When we first met I was a 19-year-old freshman in college. I was working as a dietary supervisor and was at the beginning of my adult life. You took that away from me and so, so much more.

Growing up I had the best childhood! Amazing parents who cared that we had dinner as a family every night and took myself and my older sister and younger brother on a family vacation every summer. We camped, went fishing and swimming and, of course, roasted marshmallows. I was always excited to learn something new.

As I stepped into my teenage years, my passion for helping others blossomed. I started a job at a local nursing home and attended vocational classes in nursing. I had found my niche. I first noticed you, scleroderma, as a nagging pain in my wrist and elbow. Then, like so many others who have met you, my fingers started to turn blue. It didn’t take long for me to realize something was wrong with my body, and low and behold, there you were.

I was diagnosed in 2001 with the most severe kind of scleroderma: diffuse systemic sclerosis. Scleroderma, I found out, is an autoimmune disease that affects the skin and major organs inside the body. It is an over-production of collagen, which basically turns your skin and insides to stone. There is no cure and the origin of the disease and how you get it is unknown.

At first I don’t really think I grasped the severity and the finality of you, scleroderma. My life pushed on as normal. It wasn’t until I started to get severe digital ulcers on my fingertips that my eyes opened to the horrors of the disease. Along with the ulcers, I started to develop scarring on my lungs, a.k.a. pulmonary fibrosis, and I had acid reflux so severe I would wake up in the middle of the night with the contents of my stomach coming out of my nose and mouth. My fight had started and I wasn’t going to take it lying down.

I dove headfirst into researching anything and everything I could find on systemic scleroderma. Which back then was not a lot. After days of searching the web, I came across a world-renowned doctor in Pittsburgh who had specialized in scleroderma for over 49 years. I called there the next day and was making arrangements to be seen by the end of the week.

When I stepped through the doors of the hospital for the first time in Pittsburgh, I never looked back. Everyone I met was not only familiar with the disease but had treated many patients who struggle with the disease just like me. I didn’t have to explain why my skin was so hard and tight or why I couldn’t open my mouth very wide. Or why I had red spots all over my body, and that no, they are not contagious! I had found my people: medical professionals who were familiar with scleroderma and had treated it before, and researchers who were working hard to find better ways to treat scleroderma, and ultimately one day discover a cure.

 

The UPMC hospital in Pittsburgh changed my life and I have been going there ever since! The road has not been easy  in the 15 years I’ve had this disease. I have been to three different states – Pittsburgh, Pennsylvania, Boston, Massachusetts and North Carolina on my quest for treatment. Not to mention my travels to every inch of Buffalo and upstate New York.

I have had a lung biopsy, a stomach surgery, surgery on my esophagus,  sympatheticaies on both of my hands, two cardiac ablations and a full scale evaluation three times for a possible lung transplant (which I was turned down for all three times). I have undergone two cardiac catheterizations and surgery on my fingers to straighten them so I could grasp things better. And my most recent adventure – a two-year-long process to get accepted at Duke University to undergo a stem cell transplant in a clinical trial.

I have had hundreds of tests and surgical procedures. For example: three right and left arm ablations, MRIs, CAT scans, X-rays, barium swallows, pulmonary function tests, blood tests, urinalysis, wound care treatments and ulcer debreedment on my fingers and toes, 41 hyperbaric oxygen treatments, iron infusions, chemo-based medicine infusions (Cytoxin), vitamin B12 shots, a PICC line put into my artery in my neck, EKGs, ECHOs, countless hours of PT and OT, and I’ve taken thousands of pills.

But through it all I have always focused on the positive parts of my life. Even at times when I am at my lowest, which includes my most recent let-down. I was denied acceptance into the stem cell clinical trial. Hearing the doctor say the word “No!” was probably the most devastating thing I have ever had to endure. Even then, I just kept pushing on and am trying to live day to day, experience life in the moment and enjoy every precious day I am given.

I look back on my life so far and am amazed at how I have met so many kind, selfless medical professionals and how I got to share my story with them. I started my own personal website on Facebook to try to reach other survivors who like me are just trying to “Stay Alive With Scleroderma!” I have had the pleasure of hearing from so many people from all over the world. People like me who were lost and had no idea what to do or how to move forward. People with a million questions who just want advice or a shoulder to cry on. Most of the time they just want to hear from a person who has been living every day with this cruel disease and know they can live a meaningful life while battling a terminal illness. I like to think I am helping them. That I am making their lives a little more bearable.

This past year I won a scholarship to attend the National Scleroderma Patient Education Conference in New Orleans. It was hands down the best three days of my life. I was privileged to be asked to participate in an interview for a commercial that a group called SPIN was shooting. They are putting together an educational website on scleroderma. I also volunteered to have photos taken of my hands and my makeup-free face to help the scleroderma foundation teach others about the disease.

Unless you are sick, you don’t know how “normal” it makes you feel to finally meet someone who can relate to your struggles and who knows what you’re going through firsthand! Someone who understands what it feels like to have a finger amputated or to need a feeding tube because you can’t swallow food anymore. If you had asked me 10 years ago to take a photo without my makeup on or speak publicly about my disease on a personal level, I would have given you a very, very hard no! Mainly because I just wasn’t living in my truth. I was letting my disease control me and how I lived my life and that, to me, was unacceptable!

Yes, scleroderma, you have changed my life in so many ways. In ways I cannot forgive, like causing me to have to quit nursing school without my degree and to resign from my job as a medical assistant because I was too exhausted to do all the work I was required to do. You have cost me friendships, relationships, my ability to have children, family vacations, job opportunities and you have restricted where I go, with whom I go with, when I go and if I go anywhere.

Having said that, I would not change a single thing about my life! Yes, my life has been drastically changed and I have had to learn to let go of myself as a healthy, normal person. I have had to teach myself how to live a life of a medically challenged person. And trust me, there are days when the bad definitely outweighs the good, but what would be the point of wallowing in the what-might-have-beens? In the things I can’t change? That is a waste of the time which, frankly, is very precious to me.

I honestly believe scleroderma came into my life for a reason, and day by day I am learning what that reason is. I could not look at myself in the mirror every day if I didn’t share all of my triumphs and all of my struggles over the last 15 years with others. I would have been so thankful to have had someone willing to reach out to me and answer my questions and listen to me cry over all of the things that were happening to me, the changes my body was undergoing and the things I had to give up. So I want to do that for other people struggling like I was. If I make just one person feel better about themselves and their situation, then to me, that’s a win!

We cannot expect to have a cure fall into our laps, so as long as I am able, I am going to do my part to help educate people about this disease and make scleroderma a household name! I will never stop fighting for my life!

Yes, I am a 34-year-old women living with scleroderma, but scleroderma does not and never will define me as a person. I have so many other qualities than that of being terminally ill. I will get up every day living my truth and fighting to stay alive with scleroderma. I could never say I’m thankful for getting sick, but I can say getting scleroderma has opened my eyes to all of the beauty of life and how it was passing me by. I used to live my life as if I had a lifetime to live. Now I  try to live every day to the fullest and be present and open to experience all of life – the good and the bad. I may not get to live my life exactly how I envisioned it to be, but I refuse to let this disease dictate how I experience my life, as long or as short as it may be.

Respectfully yours,

Amy

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