3 Moments When Scleroderma Broke Me

3 Moments When Scleroderma Broke Me

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As I’ve adapted to a life of chronic illness, key moments have broken my soul. These moments have refocused my view about life by pushing me past the definition of “normal” life circumstances. Scleroderma is constantly re-carving my comfort zone and placing me in situations that strengthen my emotional boundaries. The disease has taken parts of me away, but after recovering, I get to choose what fills the empty space left behind.

1. Experiencing my first scleroderma loss

When I first created the Scleroderma Strong Facebook page, I had a fresh mindset and the zeal needed for supporting other patients. One of the very first people to reach out to me was a woman named Annie. We messaged back and forth, and she vented to me about everything she was going through. She was bedridden in the hospital in complete organ failure. She experienced heart failure, but the doctors successfully resuscitated her. She felt as though she had another chance at life.

I tried to lift her spirits and encourage her to not give up and to set small goals for her future. One day, I went to message her and she wasn’t replying. I checked her Facebook page, and she had passed away. I wasn’t expecting it. This was the first time I had witnessed how scleroderma could take someone’s life. I was completely crushed. A waterfall of tears rushed down my cheeks as I read the details of her funeral. I felt terrible that I couldn’t save her.

As the years went on and I became friends with more people with scleroderma, losing them was a risk I’d always have to face. It’s nothing you ever get used to, and it becomes frightening because in the back of your mind you wonder if scleroderma is going to take your life, as well. The experiences with death and grief have made me endlessly grateful for every little thing in life. I’ve placed a very high value on the time spent with people I love.

Messages exchanged between Annie and me. (Screenshot from Jessica Massengale)

2. Being unable to use my hands

After I was diagnosed in my early 20s, I still tried to do the normal things a 24-year-old would do. One day, I was preparing food to cook and couldn’t open a package of chicken. This was the first time I was unable to do something on my own. I asked for help from someone I lived with at the time, but they didn’t help me. I left all of the vegetables, seasonings, and chicken out on the counter, got in my car, and sobbed uncontrollably. I screamed and cried and felt demolished by a wrecking ball of frustration.

I called my grandparents, and each of them took turns consoling me. They told me to come over and eat dinner and relax. Nowadays, these moments of sadness are few because this is my situation. My hands are extremely deformed now compared to that moment six years ago. I’ve learned to accept it and to keep my face toward the sunshine and not the shadows.

Sept. 13, 2013 was the last time I did my own hair. (Via Jessica Massengale/Instagram)

3. Treating a horrible ulcer

Ulcers are a common painful nuisance that many patients have to deal with. Last year, I had my first infected one. It was unlike any ulcer I had ever had and it kept oozing pus. The scab came off and revealed a bloody hole in my finger. It was around 10 p.m. and I started panicking in front of my family, which was a first for them.

My mom, who is a nurse, wrapped it with antibacterial ointment. I saw a hand specialist and he explained that I had granulated tissue in the space where the ulcer was trying to heal. He put silver nitrate in the wound, which killed the extra tissue (and burned like crazy) and gave me packets of Xeroform to wrap it.

This experience was very traumatic for me and I felt so defeated that scleroderma was still throwing curve balls at me when I thought I’d seen it all. But to my surprise, the ulcer healed very quickly. I was so grateful to see a doctor who knew exactly what it was and how to treat it. I also didn’t have to get it amputated, which is a big plus.

From left, after two weeks of treatment; totally healed a month later. (Photos by Jessica Massengale)

These moments were all a mere illusion, tricking me into thinking that I couldn’t overcome overwhelmingly difficult circumstances. But I had to choose what lessons to learn and not harbor hate, because the world needs more people who look on the bright side. People like me and you, beating the odds, every day we’re alive.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

6 comments

  1. Jodi says:

    Thank you for your positivity even when it is hard. I have Limited Scleroderma and as my Rheumatologist says am in great health for someone diagnosed in 2011. Yesterday I had to start my first round of steroids. I was so angry at the situation that I wanted to cry. I have not felt that way since my diagnosis. I deal with the Raynaud’s and the accompanying comments about how it isn’t that cold out, or this is Florida not Alaska, but I take it all with a grain of salt and use opportunities to educate. I am not one to wallow, but every time you see your”normal” decline there is a little grieving. So many have it worse than I do, but to this was huge. Good bless you and stay strong!

  2. Barbara says:

    I to have scleroderma, have had it for twenty two years. I just had to adjust for everything I do, my fingers are also bend with other ailments. It has been very difficult but I cope, it’s the help with my ruematalagist and medication that I have coping.

  3. Louise says:

    When I was diagnosed with scleroderma 17 years ago, it was very scary. I knew nothing about the disease. The best thing I did for myself was to join a scleroderma support group. I was no longer alone and found it easy to share my concerns and learn from others. Through the years the disease has progressed and it now affects my heart, lungs, and esophagus. I have calcinosis in my fingers and wrists, and my features have changed. I have tried to learn as much as I can about scleroderma, as I know we are our own best advocate.

  4. Helena says:

    Good Day let me be the first to say that I am so proud of you for talking about your experiences. But don’t let those moments get you down your still here fighting. I also glad that people are more aware of this disease and this is giving more attention now than it did back then. Each of you continue to do the things you love to do enjoy your life don’t let this stop you from living.

  5. Lynda L Moore says:

    I have diffused scleroderma which I knw very well how disruptive it can be. Staying positive and as active as you can helps. God has blessed us all and is with us through our trials for we become stronger and wiser with each change we go through. May God be with & continue to bless us with strenght, courage ,faith.

  6. Debbie Morris says:

    Thanks for sharing sweetie..all of these things help so many of us as patients to continue to keep purchase heads up and fight!Scleroderma may be alot for us to endure but we are warriors and we can stick together and beat this disease!! Love and hugs

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