As a Scleroderma Patient, I Am All of These Things

Amy Gietzen avatar

by Amy Gietzen |

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I am a scleroderma patient.

Saying or writing that is hard for me. It took 20 years of being a patient to feel confident enough to say it out loud.

I’ve had systemic scleroderma my entire adult life, and it’s changed the way I live, how I do my job, where I go, and even how I get there. I was diagnosed at 19, and I’ve since had to learn to adjust my expectations about what I want in life and how I intend to achieve my goals.

I’ve also had to revisualize how to enjoy my life as a chronically ill person. This hasn’t been easy, and some days I’m unable to get out of bed, my entire body aches, and even the hair on my head hurts. Yet, through it all, I have endured. Each step of the way has taught me so much about myself and what I am capable of.

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I know I am strong, but I didn’t realize how strong until I had to deal with painful ulcerated sores on my nose, ears, fingers, and toes.

I am also brave. Proof of this is that I had my first surgery, to correct a severe ulcerated wound, when I was still a teenager. The surgeon didn’t know if he could save my finger or not until after I was on anesthesia and he had looked at it. While I ended up losing a good portion of my finger, thankfully, the surgeon was able to save some of it. Yet as the years continued, I ended up losing the tips of each of my fingers.

I am humble. What I deal with is debilitating, but I know that someone else always has a worse situation than mine. Because of this, I am empathic to all patients.

I am resilient. I have pushed through all of the pain, the depression, the loneliness, the fear of death, and so much more, and at times, it can feel like too much to handle. But I’ve made my way through it all because of my willingness to live. I’ve fought for 20 years to be able to write this column.

The day my doctor told me I had scleroderma, I knew life as I knew it would change forever, although I didn’t know how much until I had actually lived through it. Since then, I have become a scleroderma advocate and a warrior because I’ve had to.

We must all wear armor when dealing with this disease. I’ve needed armor to make it through all of the gut-wrenching decisions I’ve had to make about my health, life, support system, and emotional well-being.

Don’t get me wrong, my armor is bent, dull, cracked, and old, but it has shielded me during my 20-year battle with this disease. It has saved my life, for which I am grateful.

To fight scleroderma, humor has been my weapon of choice. When I have an unbelievably grueling day of doctors’ appointments, tests, and unwelcome news, I use humor and wit to restore myself and lighten my emotions.

It seems that the past two decades have unfolded both slowly and in the blink of an eye. I have processed many different feelings, including elation, happiness, and a sense of strength. I’ve also experienced defeat, depression, grief, and loneliness. Through it all, I’ve always returned to humor, the single emotion that has helped me live each day with gratitude and perseverance.

Welcome to “Staying Alive With Scleroderma.” This column is a love letter to my life as a chronically ill person with systemic scleroderma. It may not be easy or fun at times, but it is my life. Each day, I push past my disabilities to make my life as full as I can. I am just trying to stay alive with scleroderma!

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

Comments

Diane B Darwin avatar

Diane B Darwin

Thank you for such honestly!! I've had Scleroderma for 9 years after a bout with leukemia. I agree with you; humor and a positive attitude, along with a belief that God is with me gets me through the day!

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Victoria avatar

Victoria

I really appreciate how she has expressed her feelings in dealing with this disease. I feel the same way at times. So glad to know there are people who have humbled themselves, regardless of their daily battles.

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Jennifer Money avatar

Jennifer Money

I relate to a lot of this. There is so much grieving for the loss of my envisioned life and the ways sclero has slowed me down academically. It is hard for others who aren’t experiencing it to understand and there is so many times I have felt like a burden. But humor is key for me too, even if it is dark humor at times. There is so much of this disease that many of us experience alone.

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Sarah Budd avatar

Sarah Budd

Fantastic article Amy!! I can't wait to read more.

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Carol Tyson avatar

Carol Tyson

Just like the author I to use humour to get me through the day. It’s been 27 years of systemic scleroderma and it’s one day at a time, I am on marriage number two and I am thankful to have someone by my side who is learning what it’s all about. Without the support of family and humour what is the sense but we are put on this earth for a reason even if this reason is to be there for one another on our struggles. I try and find beauty in every day and in everyone at the end of the day we are warriors!

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Tobey Schwartz avatar

Tobey Schwartz

You are indeed a warrior! Bless you.

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Ilene Wax avatar

Ilene Wax

You are awesome! Spoken from your heart and sole and a true warrior!

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Mary S. Northington avatar

Mary S. Northington

I have had scleroderma since the early 1970's. The story of each of us affected by this multifaceted condition is individual and unique. The solution is neither simple, direct, nor singular. Blessings to all who fight the battle.

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