Adapting, Accepting, and Finding Peace Despite New Scleroderma Challenges

by Lisa Weber | July 29, 2022

How many times have you asked yourself, “Is this scleroderma?” Odd sensations, abnormal changes, pain, and even visible deformities — there’s no shortage of strange symptoms with this disease.

I used to embark on a fruitless journey to discover answers, spending hours researching and probing fellow patients in support groups. I never found answers that helped. I only found people experiencing the same thing, but not an explanation for why it was happening. Nothing I discovered helped to stop the pain or heal the damage.

No matter which new symptom I experience, doctors will either treat me to heal it or minimize the disease’s progression. Worry has never changed the outcome. There’s no point in getting myself worked up over every ailment. My conclusion is this: I don’t plan on getting an advanced degree to help find a cure for scleroderma, so I might as well just buckle up and ride this roller coaster without much thought.

My Top 7 Scleroderma Self-care Items

Making a mental shift

My new plan of attack is to stay proactive with doctor appointments, adapt to the changes with support, and then clear my mind of it.

I have to say, removing the panic and worry has helped tremendously. I once learned from a meditation coach that noticing feelings in my body is important, but it’s equally important to allow my mind to accept them and then release all emotions attached to them. This mental shift has made a huge difference in how I deal with medical issues.

Pain will always test my mental strength

Earlier this year, I noticed a golf ball-sized lump forming on the top of my hand. I got it checked out, and X-rays didn’t show anything too concerning. So I carried on as if it weren’t a big deal, despite it limiting my mobility and causing a decent amount of pain.

Fast forward to today and not much has changed, including my level of concern. It’s not that I’ve given up trying to stop whatever progression is taking place inside my hand, but rather I decided I won’t let it ruin each day with additional negativity.

I now favor my right hand instead of my left one and ask people to help me open things. I purchased some tools to make gripping things easier when opening bottles and jars. And I scheduled an appointment with an amazing hand surgeon. Other than that, I try not to think about it. Even if I bang my hand accidentally, I’ll experience the inevitable intense pain and then move on.

Finding a way to live again

This cycle of acknowledging something is wrong and then intentionally releasing the worry has allowed me to live free from scleroderma. I finally have full control of my mind. This has made it possible for me to live in each moment and focus on everything besides the disease.

There will be days when the pain will outplay my mental toughness. And there will be struggles to get appointments with busy doctors. But I choose to fight my battles and will continue to focus on my mental strength for the win.

I’m happier without all of the “whys” and “what-ifs.” Nothing has changed except my mindset, and I feel whole and alive again — free to experience my life through a clear lens. I’m finally stronger than scleroderma!

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.

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About the Author

Lisa Weber Lisa Weber lives in the suburbs of Tampa, Florida, where she works hard at being a wife and mother of two beautiful girls. She’s passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Her diagnosis came in 2014, but she continues doing the things she loves: working as a client success manager, cooking (poorly), building furniture, and jogging (slowly). She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and continue her personal fight to survive and thrive until a cure is found.

Comments

Anita

Lisa,
Thank you! I too have struggled with the ifs and whys. When the physical pain is really intense, it's difficult to think about anything else, so I try to go into the pain, do what I can with meds and physical therapy exercises and hang on--knowing that I want to live and right now is part of that. When the pain subsides, I'm grateful--truly grateful for my life, my loved ones, and the interesting experiences of my long life--truly grateful for the now.

Rosaleen chao

Your article hit home with me once again. I’m in the same boat as you and I didn’t realize I have achieved this level of power you write about. I have accepted that I have Scleroderma and just do through the day with he ups and downs. I adapt with everything, but when real friends ask how I’m doing, I still cannot control my emotions ( tears) and wave it way within a minute or two. I can’t let my self think too much about the future and stay within the present 💕

Sandra Louise Moore

Finding support online when doctors don't understand the disease. Sister is without sufficent oxygen after being discharged from the hospital.

Susan Andrulis

It is my birthday. And my scleroderma has been overpowering the day.

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