Reflecting on Two Decades of Pain and Triumph With Scleroderma

Amy Gietzen avatar

by Amy Gietzen |

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Last year, I celebrated the 21st anniversary of my initial diagnosis of systemic scleroderma. Well, it wasn’t really a celebration, and I didn’t have a party with balloons and confetti. It was more of a moment of mourning for the life I had lived before my scleroderma diagnosis, followed by a moment of gratitude because I’ve made it this far.

Life hasn’t been easy, that’s for sure. I’ve had days when I simply didn’t want to be on this earth anymore. Days when the simple act of lifting my head from the pillow was the toughest of challenges. Some days I would’ve given just about anything not to be in my body.

Living with scleroderma is the hardest challenge I’ve faced in my life. This disease is something I can’t fully explain in words. But each day I wake up and do it over, again and again.

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I was diagnosed at the age of 19 and began to quickly advocate for myself to find a coordinative care team. Living with this disease has been a roller coaster of emotions and physical ailments. I’ve had over 30 medical procedures, from a lung biopsy to teeth extractions and everything in between. I’ve been in the hospital over a dozen times and in ambulances more times than I care to count.

The daily pain I endure would make even the toughest of people break down. Dealing with the feeling of being unable to live a life of normalcy and to grow old with a partner or loved ones made me feel extremely depressed and overwhelmed. I often envied other people and how carefree they all seemed to be. Having to physically wade through the minutiae of daily tasks I could no longer accomplish would make any sane person lose hope.

Twenty-one years is a long time to be sick. Each day is a new struggle to find balance in my life with scleroderma. This disease doesn’t affect only one facet of my life — it affects practically my entire body. My skin is hard, tight, and itchy. Over the years, my lungs have developed fibrosis, or scarring, which makes breathing extremely difficult.

Two summers ago, I had a pretty big health scare. Out of nowhere, I had a cardiac event called ventricular tachycardia and was rushed to the hospital by ambulance during the height of the COVID-19 pandemic. It was a pretty serious situation, and I was all alone. I had no one by my side and was without the doctors and specialists who have my complete trust and confidence.

Everything I’d gone through before that moment seemed to burst into the forefront of my mind, allowing me to see things crystal clear. I was able to slow down, breathe, and explain to the hospital staff exactly what was going on and why. I spoke clearly, concisely, and without hesitation. On that day, I’m convinced, I saved my own life.

Living through that experience changed me. It made me feel extremely grateful for my team of doctors and specialists. It allowed me to appreciate what I have been through over the years, because if not for all of those bumps in the road, I wouldn’t have had the wherewithal to trust my gut. I wouldn’t have been able to articulate to the local hospital staff exactly what was happening to my body.

I’m a firm believer that everything happens for a reason. At the beginning of my scleroderma diagnosis, I couldn’t find a reason why this awful thing had happened to me. Now, 21 years later, I might not have all the answers, but one thing I do know is that this disease has changed me completely. It’s allowed me to speak up, trust my instincts, and most important, to lead by example. I can’t think of a better way than that to turn a negative into a positive!


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, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Anita avatar

Anita

Amy--once again--thank you, thank you, thank you. One of the results of living with this medical situation, I think, is the development within us of compassion for ourselves and others.
Blessings,
Anita

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Amy Gietzen avatar

Amy Gietzen

Anita, I hear your pain and know you are not alone!

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Sira Perez avatar

Sira Perez

Thanks again for sharing your stories.
My husband has been suffering from Diffuse Scleroderma for 16 years and this has been one of the worst years because he lost a lot of weight since he lost his appetite. He was seeing a GI that after a colonoscopy and endoscopy decided to put him on a gluten free diet and Prednisone. As a result, he lost some more weight. The GI suggested to insert a feeding tube and we strongly disagreed and went for a second opinion with another GI. It has been difficult for him to stay above 100 lbs. After having some more tests done by his internist, they found his testosterone levels were very low and my husband is now getting testosterone and vitamin B12 shots every 3 weeks. This has done the trick for him and he has his appetite back and has gained a few pounds. I advise you all to follow your instincts and always go for a second opinion if your insurance permits and keep fighting. You have the control to seek the best medical advice you can. Many blessings to all.

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Ellen F. Graham avatar

Ellen F. Graham

Dear Amy, Thank you from the bottom of my heart for writing this article. I really struggle with the day to day existence of this illness. You have been through so much and are still fighting after 20 years! I am in awe of your strength. I am taking your words into my heart and I know it will keep me strong mentally and help me to keep fighting and advocating for myself. I needed this today more than you know.

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Amy Gietzen avatar

Amy Gietzen

Ellen, it is so inspiring to receive comments like yours. This disease can make you question everything in your life and knowing that I helped brighten your day if only for a few minutes really touches my soul! Thank you for your kind words-

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Tim Harley avatar

Tim Harley

Thank you for writing the articles you do. I am sure your words effect many more people than you may ever know. I wish you peace and solace, even when the journey is difficult.

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