I’m Stronger Than I Was Yesterday — and Stronger Than Scleroderma

Improving lung function has been a challenging goal for columnist Lisa Weber

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by Lisa Weber |

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I vividly remember sitting in the car after my pulmonologist broke the news that my lungs were scarred and I had interstitial lung disease. It was the summer of 2015, a year after my scleroderma diagnosis. According to everything I found online, this put me on the fast train to my grave.

My thoughts and emotions collided in my mind as if they were on spin cycle. My anger made me feel like King Kong — I wanted to stomp and crush everything around me. Meanwhile, fear and sadness left me like a tiny ant desperately seeking shelter on a highway. I lived for weeks inside this emotional storm.

I kept replaying in my mind something my lung specialist had said: “Use it or lose it. Get your lungs as strong as they can be so they can fight.” I recall wanting to punch him when he said that. I mean, come on! Was that the best he could do? But as the weeks passed, I realized that he was giving me the fuel I needed to stand up and fight for each breath.

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Choosing to fight

Just like with every other diagnosis, I had a choice to make: either I fight or give up. The thought of my little girls growing up without their mommy made my decision easy — I would fight.

I began the battle of improving lung function with a slow walk every day. I couldn’t go alone because I would sometimes become too dizzy and winded. Even though I was embarrassingly slow, it was a blessing in disguise. Walking hand in hand with my husband while our daughters explored the trail ahead created family time that felt like a break from the storm.

After a few months, I was walking a mile without help. That turned into 2 miles. Then I added a slow jog for a few minutes. Fast-forward to 2018, and I was running a 5K (3.1 miles) without stopping. I didn’t crush any records, but I did crush my goal!

I consistently pushed myself to be better than I was the day before. Some days I failed and had to sit on the trail to catch my breath. Other days I went farther than I thought possible. The only constant: I didn’t give up trying to make myself stronger. I set tiny goals and kept pushing to reach them.

Scleroderma doesn’t make it easy

Despite all of this, scleroderma tried to destroy me again. Since 2019, I’ve survived some significant setbacks: six strokes, the loss of cartilage in my hip, and excessive heart palpitations. For each new issue, I was ordered to put exercise on hold.

All that work I had done was destroyed. My lung function steadily declined from 2020 to 2021, so I decided I would just lie down and do nothing.

Still, I began researching ways to improve my lung function and got my doctor to prescribe pulmonary rehabilitation to regain some strength. The most beneficial thing I learned was diaphragmatic breathing. Picturing my stomach as a balloon, I would inhale as much as I could to inflate it, and then slowly exhale to deflate. I practiced three times a day and repeated each session for a minimum of 10 minutes. Progress was slow, but I could tell it was helping.

Getting stronger is possible

Today, all my ailments are under control, and my latest pulmonary function test showed incredible improvement. It’s the best it’s been since 2018! And the doctors finally lifted the exercise ban.

I’m starting with a slow, leisurely walk again. It certainly won’t be easy, and I’ll have to fight fatigue and extreme pain. But I know it will get easier if I push slowly. I’ll just keep trying to be a little better than I was the day before.

Although I can no longer jog 3 miles, I’m not starting at the beginning. I’m now armed with better breathing techniques. Once I climb my way back to the top, I’ll be even stronger this time.

I do wish I hadn’t read all the doom and gloom stories describing how lung involvement is a death sentence — because it’s not. I chose a better path with the right doctors, the right medicine, a positive mindset, and exercise. When I add it all together, I’m proof that it’s possible to be stronger than scleroderma. I’m proof that it doesn’t always mean the battle has been lost.


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

Sonia C Dominguez avatar

Sonia C Dominguez

Hello Lisa,

I am to challenged with ILD, and when I cant walk outside, I walk inside the house. My doctor is treating me with Rituxan and Mycophenolate it is keeping me stable. However; I developed sores on my feet's, so I have to get off the Mycophenolate for 2 weeks so I can take antibiotics.

Lisa thank you for this website you have create, it keeps me informed about this horrible, horrible disease and I have faith there is going to be a cure soon.

God bless you and stay safe

Sonia C Dominguez

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Rachel avatar

Rachel

Well done you! It's the path I also set for myself - contributing everything I can do myself to the fight and not just sitting back and relying only on the meds. So breathing exercises and and Couch to 5K (very slowly!), also all the stretching exercises ever suggested, and all the healthy eating too! I feel like some superhero holding the runaway train in place.

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Celeste M Freeman avatar

Celeste M Freeman

So impressed with your fight…and thankful for your improvement.

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Svetlana Rashkov avatar

Svetlana Rashkov

Dear Lisa,
You just can't imagine how grateful I'm for having read your story! It gives me strength, it gives me inspiration and it gives me courage to start my own blog! I don't know if you want to read my story and if it is allowed to post the link here but I'll just do it because I want so much to share it.
https://www.tumblr.com/blog/view/living-with-scleroderma/694290712462770176?source=share
Let's keep our spirits high while living with scleroderma!
And these breathing exercises you recommended are amazing! Thank you so much!

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Lisa Weber avatar

Lisa Weber

Thank you for sharing your story, Svetlana! It is important that we hear more stories- to learn from each other and know we are not alone. Thank you for being brave. Best wishes to you!

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