I Won’t Let Sarcoidosis Interrupt My Life

Charlton Harris avatar

by Charlton Harris |

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Life interrupted!

The other night I fell out of bed. I’d been dreaming I was having drinks with my brother, and while we were talking, someone stepped over the bar and started to walk on me. My immediate reaction was to kick this person, which I did. I kicked so hard I rolled out of bed, startling my wife.

I got myself together while she fussed at me, then climbed back into bed. I could tell I’d hurt my foot, and when I went to rub it, my palm came away full of blood. I’d sustained a nasty cut on the sole of my foot.

My wife became my triage nurse and bandaged me up. When I finally got up for the day a few hours later, I couldn’t walk. Imagine trying to walk to the bathroom and not being able to put any pressure on one of your feet. It felt like I was walking barefoot on razor blades.

I got myself cleaned up and had my son take me to the emergency room. After waiting for about six hours, the doctor finally saw me. He commented on the fine job my wife did in patching me up. When he removed the bandage, he told me I’d need stitches. Imagine getting stitches on the sole of your driving foot!

After the doctor finished, I texted my son to pick me up and we headed home.

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Sarcoidosis Can Feel Like a No-win Situation, Even if It Isn’t

For a few days, I needed to walk gingerly and use a cane. Walking also caused me crazy pain, which exacerbated my already labored breathing, a result of pulmonary sarcoidosis. It seemed like my health couldn’t get any worse — and then I tested positive for COVID-19.

I reached out to all of my doctors and told them my situation. I didn’t have a fever, I could still taste and smell, and I had no body aches. My only symptom was a slightly runny nose. To my benefit, I’d received both COVID-19 vaccine shots and will get the booster in a few weeks.

It was challenging to not only be quarantined at home, but have difficulty walking and breathing. The worst part was taking time off from the gym. I hadn’t been that grounded since I was 9 years old.

But I’ve said it before and I’ll say it again: Obstacles don’t define me.

I believe my efforts to stay active helped lessen the severity of my COVID-19 symptoms. This is just another reason to keep moving while living with sarcoidosis. Pulmonary rehab and joining a gym have greatly helped me focus on physical activity.

While I was quarantined and resting my foot, I thought about the times I’ve been hospitalized. Every morning, a nurse would wake me up at 6 a.m. to sit upright in a chair. I didn’t know at the time that doing so helped protect my lungs from fluid buildup. The nurse also had me do deep coughs to clear mucus from my lungs. To this day, I continue the practice.

While I was quarantined at home, I managed to do a few exercises similar to those I’d done in the hospital. I wasn’t just sitting around waiting for the obstacle to pass.

After a few days, my COVID-19 symptoms subsided and I had my stitches removed. Now I can get back to functioning with some sense of normalcy, starting with the gym.

These events were a major warning shot, and I paid attention to it. Sometimes the best medicine is in plain sight, and sometimes we have to be reminded to take it easy.

I met with my other pulmonologist to go over my recent X-rays, CT scans, and bloodwork. I told him about my recent interruptions and we both had a good laugh, especially about me falling out of bed. Just when you think you’re gaining ground, something always pulls you backward. He told me that his other patients with lung issues who had tested positive for COVID-19 hadn’t suffered serious issues, either — likely because they were vaccinated.

I say time and again that every day brings a new adventure, which could involve smooth sailing or obstacles. I begin each day by navigating the effects of sarcoidosis. Some days they hold me hostage and limit what I can do, but most days I win the battle. I don’t let obstacles define me, and I won’t let them defeat me. My life, my rules.


Note: Sarcoidosis 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 Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

Paul Spice avatar

Paul Spice

Spot on Charlton, boy do I hear you. I have Cardiac Sarcoidosis and have had for 4 years now. That sarcoid battle, what a baffling, unpredictable experience. Days of feeling pretty good then wham, can't walk a step. When I get it it is in the feet and usually the right but not always. I always find in hard explaining to people. I can't walk on it today, It feels like my foot is broken. Might be ok tomorrow though. I'm so used to puzzled looks now, often in disbelief.

We know it's real. We know it's a battle - let's keep winning it!

Keep on keeping on and thanks for your article. Cheers, Paul.

Reply
Charlton Harris avatar

Charlton Harris

Greetings, Paul. Thanks for reading the column. I'm happy that someone can empathize with what I/we go through. This thing is tough, but we're tougher. It takes a lot for us to continue to perform everyday-sarcoid doesn't make anything easy.
Please continue the fight and continued blessings on your journey. Just know that you're not alone in this adventure!
Peace, my friend!
-C-

Reply
Deborah Long avatar

Deborah Long

I experienced the same falling off the edge of the bed. Must be a sarkie thing. In my case I was drop kicking an intruder. Took martial arts arts for a period of time. I was snap kicking so hard with such force I snapped kicked myself right out of my high platform bed. Thankfully I didn’t hurt myself. Each day is an experience.. Right now recovering from a complete right hip replacement..thanks to sarcoidosis attacking that joint. Other side is in perfect condition. Go figure. My saving Grace is I always took care of my body, powerlifting, running, kick boxing , etc. Came out of that surgery with flying colors. Was walking fully without a walker three weeks out from the surgery. Doctors were quite surprised. Having sarcoidosis doesn’t always mean you’re down for the count. Was diagnosed with Ocular sarcoidosis then Neurosarcodosis shortly afterwards 2 1/2 years ago. Eyesight returned to 20/20 without glasses. On Remicade infusions every 8 weeks. Came off of it in April for the surgery. Body didn’t like that. But doing well haven’t missed a beat in my activities.. can’t wait to get back to salsa dancing, trail bike riding, global traveling (Singapore in December. Despite some glitches life is good, mostly because I deem it so not sarcoidosis.

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