Scleroderma Can Be Overwhelming, but It Doesn’t Define Me

Lisa Weber avatar

by Lisa Weber |

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It was a particularly beautiful morning. The hot Florida sun was still low in the sky, and a light breeze kept us comfortable while we watched our youngest daughter play soccer. It was almost perfect.

As usual, I was rudely reminded that my broken body needs constant attention. My bladder muscles have weakened, and I urgently needed to get to the bathroom on the other side of the field.

I need restroom breaks wherever we go. That’s nothing new. But these days, it’s not as simple as getting up and going.

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The cartilage in my hip joint has worn away thanks to constant inflammation in my body. The continuous bone-on-bone rubbing has led to spurs — rock-like formations the body creates to try to protect bones from wearing away. Constant, excruciating pain is my new mood.

To take some of the pressure off, I use forearm crutches to get around. This is the only way I can be mobile, at least until the doctors finalize a plan to fix me up.

I braced myself on the crutches and began to hobble my way to the ladies’ room. My husband, Ross, came along to hold my crutches since I’m a germaphobe. No way am I bringing them inside a public restroom! Have you seen those floors?

Illness is ugly and cruel

On our walk, I mentioned that my wrist pain was worsening from the pressure of using the crutches. He asked me what else was bothering me at the moment. I began rattling off the current sore points: wrists, toes, chest, stomach …

I laughed as I listed everything. That’s my coping strategy. Giggles somehow ease the severity of serious issues. Ross laughed along, saying, “Oh good! You’re all set!” Keeping difficult times light is his superpower, too.

His next two questions caught me by surprise. “What doesn’t hurt? What’s not affected by scleroderma?” I’m not sure if they were rhetorical, but they were good questions nonetheless.

It took me a few minutes to think of an answer. I started at the top of my head and mentally scanned down to my feet, carefully thinking about each body part, inside and out.

My answer was short: “My elbows and ears feel good and have no issues.”

We were only silent for a few seconds before the laughter took over. We chuckled for a bit. I couldn’t look at Ross, because I knew I would start to cry if the moment became serious. I kept my eyes on the freshly manicured grass and pressed on toward the bathroom.

We weren’t laughing because it was funny. On that day, neither of us could face the mental anguish of this disease. Scleroderma is too much for us to deal with every day. So, we laughed instead.

Scleroderma can’t steal the person inside

Sadness loomed over me for most of the day. I often thought about my answers to Ross’ questions. I don’t know how I got here — how my list of pains and organ damage far exceeds the number of body parts unaffected by this miserable condition.

It was a mental battle. I tried to grasp onto something positive so I could move on.

It wasn’t until later that night when I finally realized that I have two more things to add to my list — two incredibly important reasons I shouldn’t feel so defeated. I still have my strength, and I’m still Lisa!

I haven’t lost my identity as a mother, wife, daughter, aunt, sister, and friend. I’m the same person who can laugh through uncomfortable moments and use sarcasm like a pro. I can still feel loved and experience joy.

Scleroderma has not touched my soul, and it never will. Morals, values, and the feeling inside my heart cannot be stolen by this chronic illness, and neither can my strength.

Despite having many reasons to quit trying so hard, I haven’t stopped doing what I would be doing without my disease. I still show up. It may look different now, but I’m still participating in the life I built before scleroderma.

We are more than our disease

For those of us with chronic illness, it’s easy to forget that our journeys aren’t defined by our condition. Chronic pain, disabilities, and medical appointments can be overwhelming. We may feel like we’ve been swallowed up by a monster. But if we take a moment to be still and think of the reasons why we keep fighting, we’ll see ourselves again.

Living with constant emotional and physical struggles can make it difficult to remember that the struggles don’t define us. We are strong and full of qualities that cannot be quantified on a medical form.

We are more than scleroderma! Let’s remind each other of that.

***

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

freida rogers avatar

freida rogers

Man, I thought I had problems with scleroderma but mine is mild compared to Lisa. Mind is loss of muscle including the digestive system, heart, and lungs, bladder, and Bowles but not much pain

Reply
AnaMarie Medina avatar

AnaMarie Medina

Lisa, you're my hero! Sometimes I read the articles on Scleroderma News and I get depressed. I've been diagnosed since I was 36 and I've managed fairly well thank God. My face and hands have been hit the hardest in terms of dramatic change. Raynauds has affected my hands terribly. When I read the sprinkles of your blessed writing I am once again reminded that I an not alone and I do have the inner strength to face any challenges that come with this disease. My joints ache in the morning especially my hips, but I stretch, bend and breathe. And I'm filled with gratitude that I can. So thank you for the hope, and know that I'm rooting for you!!

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Neil Hudson avatar

Neil Hudson

Reading these moving words give me encouragement to keep going knowing I'm not alone in this suffering we have to endure and smile through even though we are racked with pain and doubt. I'm in the UK but find comfort in Scleroderma News and I sympathise greatly with the toilet issues as embarrassing as they are, I have just been prescribed ambulatory oxygen as this dreadful disease has targeted my lungs with ongoing fibrosis but hey ho we carry on. All the best to my American friends from across the pond and stay strong and stay well.

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Lindsey Amber Hudek avatar

Lindsey Amber Hudek

I needed to hear this! I was diagnosed in March and having a heck of a time. I push myself to fight, some days it's easier than others. I am scared for my future and can't imagine the rest of my life like this. Thank you for all your articles. You are making a difference!

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Elaine Morgan avatar

Elaine Morgan

Although I have joined SRUK I still haven't found the courage to ring the telephone number given to me. I want to know but don't want to know. I do find reading these pieces helps as I do not feel so alone in my condition. I am starting infusions of cyclophosphamide in a week and have everything crossed that this may offer some relief. After years of being a fairly fit person, playing golf, doing yoga and countryside walking, I now find myself breathless just walking a few yards. Why do our bodies suddenly attack us.

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JILL COLODNEY avatar

JILL COLODNEY

i have scleroderma diffuse my organs my entire body.. i have no family no friends, cant work no health insurance no medications..just pain ..never ending pain.

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Beverley Rawlins avatar

Beverley Rawlins

I feel for you greatly. I am presuming you have had Scleroderma for a number of years. Bless you! I was only diagnosed in 2016. I go in hospital in a weeks time for a colostomy and stoma bag. Scleroderma has affected Bowel. My toes are giving me trouble walking the last month and tendons in many places inflamed. Hood really bad too. You article has made me realise that this is probably due to the disease. Thank you! I couldn’t make out what it was, but must be it. Keep strong snd keep writing. Best wishes Beverley

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Jenice Pollock avatar

Jenice Pollock

I was diagnosed after cervical surgery and now it’s like my body is just wearing out. My bad knee is getting worse, my shoulder pops and crunches when I move my arm, my thumb joint needs replacing, and I just had an upper GI and esophagus had to be stretched and yes to the bathroom trips!! All day long and at least once in the night…..ugh

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Candy avatar

Candy

Lisa, you are an inspiration…thank you for making me feel better. I hope the future brings some relief to all of us. I suffer with esophageal scleroderma..every day I pray that the food I consume makes it into my stomach so that it digests instead of emptying. Thank you again…I will save this post to read when I am feeling overwhelmed. 💐

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Kathy Steakley avatar

Kathy Steakley

Lisa, thank you for your transparency and willingness to share your story. I shared this with my family. Sometimes I don't have the right words to describe what living with Scleroderma is like - and you've explained it so well.

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lorraine jones avatar

lorraine jones

Please be strong we are a group of people that can only understand how challenging our disease is. We as I sometimes hide what this disease does to us. I dread nights at times what grief this disease will do to my stomache, my swallowing, sleep, and wondering what it would be like to just go to sleep without 10 pillows so I can sleep upright without choking. The next day starts and hopes the day will be better,sometimes it is but not as often as we would like. Please take one thing positive from that day and cherish it. My heart is with you. Lorraine

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lorraine jones avatar

lorraine jones

Lisa you are a power of strength to all of us as you continue this platform for all of us. i have been a no show with recent comments as I struggle with my hurdles as we all do. This is a great place for all of us to go as we all understand this disease and our struggles. as all of us know. We all have a few decent days or hours, makeup on,hair combed and maybe not a flareup and that is what people see. What friends,family and others do not see is when we have to close the door. i know all of you can relate to that. Lets keep the faith and be strong,best wishes to all of you,Lorraine Jones

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