My Scleroderma Journey – by Billy S.

Profiles in Courage: My Scleroderma Journey – by Billy S.

This is the second in our series of telling the stories of everyday heroes who face scleroderma head-on. Thank you Billy, for your courage and honesty and words of inspiration.

‘My scleroderma story’ by Billy S.

“Imagine spending years dreaming of defending your country, and right when it’s in your fingertips, something called “scleroderma” comes and takes it all away, fingertips included. 

Both my grandfathers left college to sign up to go to Vietnam. When I was in fourth grade, I moved in with my grandparents. My grandfather had a great sense of morality and work ethic. He worked for General Motors and had a 17-acre farm with racing horses. My whole life I have tried to make this man happy; he is the best man I ever met. He actually was my father’s stepdad and started raising my dad when he was 4 and later adopted my father’s children and raised them as well. This man raised two generations of children in his house and never had any himself, all because of his love for my grandmother. Just like my grandfather did, I always wanted to serve my country.

How It Began

As I turned 16, I signed my army contract. At that moment I was already working in a garage and taking culinary classes. I noticed that my hands were hurting a lot trying to grab wrenches and knives, and would turn purple and blue from the freezers in culinary class and while working on cars in the cold. So I had my grandmother make a doctor’s appointment. Within two doctor’s appointments they told me I had lupus and/or another auto immune deficiency and would be very lucky to see 21. I thanked them for their time and stopped going to the doctors because if I had an official diagnosis I would not be able to leave for the army, which was all I wanted to do. In the next year and a half in school I told no one but a handful of people that I was sick. There was nothing stopping me from leaving for the army. 

While I was still going to school and working, I got the worst staph infection of my life. I was working in my garage and cut my hand 6 inches from top to bottom. I was in the hospital for 23 days and they were debating removing my hand but I wasn’t having that. I told them about my wish to join the military and they did whatever they could to save my hand. Finally, the infection left my bones and I didn’t lose my hand. I still had to deal with a lot of pain in my hands and neck but that had just become part of my life. 

In the Army

The day that I left for basic training finally came, but unfortunately, I was having an issue with stomach ulcers right before I left and started throwing up blood a lot but didn’t know why. I wouldn’t go to the doctor because that could jeopardize leaving for training. As long as I didn’t know an actual diagnosis I wasn’t lying and couldn’t get in trouble for it. 

In the army you are assigned a battle buddy. They must be with you at all times, no matter what you are doing. The philosophy is “one is none and two is one”. My buddy had been witnessing me throwing up blood for weeks and when he saw that it never stopped he finally told our commanding officer and I was sent to an army doctor in Oklahoma. Using some very abrasive language, the doctor told me that he reviewed my file and I would be sent home. I was crushed. 

I came home and was lost as can be, but still didn’t go to the doctor. I really didn’t care what was going on. It didn’t matter. 

Back Home, Where Things Got Worse

On top of everything that had happened, within 5 months of my discharge my grandfather had a heart attack and died. 2007 was the best and worst year of my life. I graduated, left for the army, was medically discharged, the man I considered my father died, and I still had something that was going to kill me by 21, as I was told a few years before. I had one positive: a woman named Melissa. She was there for me. In early 2008 the doctor told me I had systemic scleroderma, rheumatoid arthritis, poly-articulate arthritis, Raynaud’s phenomenon, pulmonary hypertension, and positive ANA antibodies and that I had at the most five years to live. I was the youngest male in the world with this form of the disease with organ involvement. My ulcers had caused me to almost stop eating and the longest span I went without food was 23 days. I would drink liquid supplement drinks and if I could drink one a day, I was happy. As a result I went from 220 lbs. to 150 lbs. in three and a half months. I still have not been able to put the weight back on. I started taking a lot of medications and had a rheumatologist who took care of my medications and issues but I had a lot of trouble finding a primary care doctor. So far, I have had five (!) primary care doctors tell me that they were uncomfortable with me as a patient due to my disease and age.

They put me on a lot of medications and injections. I also started going to a pain management doctor. I didn’t understand pain management at all. The first pain management doctor overprescribed pain medication and did not help me learn how to manage my drugs and the pain. I now understand pain management a lot better and have an amazing doctor who takes the time for me and honestly cares. 

The Love of my Life

Throughout all of this I had my girlfriend Melissa by my side and that was what mattered. She had become pregnant and we had an amazing daughter named Angela Grace. Melissa is and was the most amazing woman I have ever met, and the love of my life. But because the doctors had said I would die soon, I started disassociating myself from people, even from Melissa. Eventually Melissa and I split up because of the way I acted and I take full responsibility for this. I just wasn’t going to let her want to build a life together I couldn’t give her. I still saw my child 5 days a week and we still raised her together. 

The Worst Ulcers They Had Seen

I started going to the doctor, getting testing done, and taking medications again in 2010. They told me the scleroderma was definitely affecting my organs, which was a good thing because that meant they wouldn’t ‘guinea pig’ me with many medications. I started to do clinical trials for the University of Michigan to help find an answer to help me and other people with scleroderma. 

In 2012 I had the worst ulcers I had ever had. I couldn’t bend my index fingers and thumbs for almost a year and a half, the doctors said they were the worst digital ulcers they had ever seen on someone who didn’t have to undergo amputation. These ulcers started to change me mentally and I started disassociating myself with a lot of people. By 2014 Melissa and I even decided that it would be better for Angela, our daughter, not to see me again. We did not want to let her see me be sick and die. So I stopped seeing my daughter, which was the worst of everything. In June of that same year, I found out through a right heart catheterization that I was in the advanced stages of heart failure. The statistics say 50% of patients die within the first five years of heart failure, but it didn’t really bother me because I had already been told I would be dead soon anyway.

Helping Patients Though the Scleroderma Foundation

Then, a year and a half ago, I found the Scleroderma Foundation. It is amazing. I am willing to do anything to help the cause of advocacy for this disease that changed and took everything in my life. I am now a support group liaison for the Michigan chapter and want to do anything and everything I can, while I still can. 

The Way Things are Now

I have had to start a heart-healthy diet and have to be sure I am not retaining or losing too much fluid. I have also started working out five days a week, even when I don’t feel well I try to exercise, but some days I just physically can’t. There are some positives: On my good days, I look healthier than I have in years (although my insides are technically worse than ever). Everyone’s life is different, and this is mine. I either live it or I don’t. I’m happy to experience life – even with everything that has happened. I still smile every day and I’m happy my child’s mother understands my situation and the decisions I’ve made, although, on some days, I honestly don’t know if I would be able to smile if it wasn’t for the pictures Melissa sends me of her and our daughter.

Thank You for Your Time

I have been told to end essays with a quote so I’m going to end this one with some of my favorites. I hope my story helps someone out there.

“Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it,” – Siri Hustvedt-

 

“Do not fear death so much, but rather the inadequate life,” – Bertolt Brecht-

“All stories, if continued far enough, end in death, and he is no true-story teller who would keep that from you,” – Ernest Hemingway-

Thank you for your time. Always love your family and country,”

Billy S. 

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