Celebrating a Birthday, and a Full Life With Scleroderma

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by Lisa Weber |

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I may not be able to blow out all 44 candles in one breath, but I did get to live another wish. I’m here, and I’m celebrating another trip around the sun with nothing but gratefulness and love in my heart.

Birthdays no longer just tack a year onto my age count. They’ve become a milestone to remember how fortunate I am. On these days, I celebrate and reflect on my journey thus far. And boy, it’s been a wild ride of ups and downs!

Birthdays are different now

When I was newly diagnosed with scleroderma at 36, my husband threw me a surprise party — even getting some of my best friends to fly thousands of miles to join us. It sounds morbid, but that birthday felt more like a funeral celebration.

We were both struggling to understand the new concept of living with a rare and incurable disease. That party was a reflection of our fear. It was still unknown if my disease would progress fast and end my life in a few short years. We were told we had to wait and see. All we could do was stay busy, make arrangements for an unstable future, and celebrate every day with the grandest of gestures.

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The future can change

Some people questioned why my husband didn’t wait until my 40th birthday to throw the extravagant party. No matter what explanation we gave, it was hard for them to understand until the following year.

A few weeks before my 37th birthday, my doctors discovered my lungs were being attacked. The damage came on fast, and in just a few weeks, I was in the ICU fighting for my life. No one had to tell us to prepare for the worst; we were well aware scleroderma was a battle not everyone got to win. And at that moment in my life, I was on the losing side.

At a young age, I was experiencing the drowning feeling of a body giving up. It was as much mental anguish as it was physical. Every day was a haunting reminder of what I could miss out on. And every day I battled to fake a smile so I could do my best to enjoy the time I had left.

Life can get better

Yet here I am, seven years later. It seems unreal, but I went from not being able to make my bed without collapsing from weakness to jogging a few miles in the hot Florida sun. I’m no longer living with the fear of dying!

Having excellent doctors and finding the right cocktail of medicine definitely played a big part in my underdog story. But I believe my sideline cheerleaders are the reason I’m thriving as a survivor today. My family and friends gave me a reason to fight. They forced me to hold on to hope and gave me the courage to charge forward.

I’m not saying a positive mind and support can cure all. Had my body rejected any of my medications, I doubt I would be here today. But I do know there was a time when I felt I was at a fork in the road. I didn’t know it at the time, but I had a say in the outcome. I had the choice of pushing myself or giving in.

I was in severe pain, and everyday tasks were a challenge. Living was difficult, and I wanted to give up the fight. Staying under the covers and doped up on pain meds would’ve been the easier path to take. At that point, there were feelings of wanting to give up. Had I given up mentally, I’m convinced my body would’ve been fully consumed by my disease.

Find a way to keep fighting

I’m grateful for every word of encouragement I received. That’s what persuaded me to take the more challenging path — every outstretched hand offering support and each reminder that I mattered to my tribe of people. When I couldn’t stand, I fought on their backs.

My 44th birthday doesn’t simply serve as a milestone to mark another year on my timeline of life. It marks a victory in the fight against scleroderma. I’m celebrating the journey I’m surviving and the life I’m living.

I hope my story helps others. For the people deciding which road to take, please don’t give in. Find your reason to fight and work on your mental strength. I’m living proof that tomorrow may be better than today.


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

Rita Doyle avatar

Rita Doyle

I just turned 68. Originally diagnosed in 2007, I had so few symptoms, I barely acknowledged even having the disease. Then, last year, following a hysterectomy, I found my small intestine was involved. These effects are hard. My tribe is keeping me alive. Without them, I’d give in.

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