Chronic Illness and Living a Life Without Compromise

Charlton Harris avatar

by Charlton Harris |

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“Blessed are the pure in heart, for they shall see God.” — Matthew 5:8

In 2017, my life took a turn I never expected. When something blindsides us, especially when it involves our health, sometimes we can interpret it as just an interruption in our lives. But most often, it’ll flip us on our heads like a coin.

In August of that year, I had my first lung collapse due to pulmonary sarcoidosis. Needless to say, it was the scariest thing I’d ever experienced in my life up to that point. After a week in a hospital close to my home, I was transferred to Temple University’s Lung Center in Philadelphia, where I’d been a regular patient for a few years before this episode. I spent the next two months rehabbing there without knowing how my life would turn out.

After I was released, I participated in pulmonary rehab, and when that ended I joined a gym. Five months into nearly getting myself back together, my other lung collapsed, which really threw me for a loop. A few months after that episode, I had a bout of crepitus in my chest cavity, which led to me being intubated.

I have no problem telling anyone who will listen that those back-to-back episodes truly scared me. I feared for my life.

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When we encounter struggles in life, more often than not, we’ll make promises with conditions. Sometimes we’ll make promises to ourselves, while other times we’ll express to a higher power our desire to do better and improve our lives. In the end, we’re only negotiating our own well-being and future.

For example, after being discharged from various hospital stays, I would promise to do things I’d always wanted to try. Nothing beats failure better than trying.

I wanted to be a good takeout cook, and I had the idea of selling signature meals and building a strong following. I got as far as completing only a couple nutrition and food safety courses. I promised myself I would become a better video editor. Instead, I let technology get ahead of me while I avoided practicing my craft. I promised myself I would cut down on my little personal happy hours. I did, but deep inside I felt I could do more. Healing oneself starts on the inside.

Once you make up your mind to do something, it shouldn’t matter what obstacles are in front of you. Like me, you can have 100 reasons for not going after something or finishing up that dream. It’s easy to fall into that mindset if you have a chronic illness, because you feel like, “What’s the point?”

The point is that the dream is yours. I guess I’ve been so preoccupied with the “what ifs” instead of the “why nots.” With more remote opportunities available, all of us should be chasing whatever inspires us. Make the move to chase what inspires you, and if you’re lucky, you’ll prove someone wrong who didn’t think you could do it!

“Blessed are the poor in spirit, for theirs is the kingdom of heaven.” — Matthew 5:3

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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

d.a. scott avatar

d.a. scott

"The dream is yours" is a great reminder I'll carry with me this week. Best wishes pursuing yours!

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Charlton Harris avatar

Charlton Harris

I remind myself of that every day, and I often tell my kids the same.
Thanks for reading!
-C-

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Joeann Craddock avatar

Joeann Craddock

Hello My fellow Sarcoidien Mr. Harris, It has been said out of 100% of what happens to us, 10% is the situation, 90% is how we react. Five factors have, and still play a role with my long time companion, Sarcoidosis. My major issue is Pulmonary. In addition to COPD & EMPHYSEMA (2004 Second-hand smoke) I am going on 38 years. As my five factors that to years for me to a certain point. 1. Acknowledgement, 2. Acceptance, 3. Tolerance, 4. Patience, 5. Endurance. I tackled one at a time before going onto the next. Though initially not knowing anything about this disease, of which I hadn't heard. Didn't know why I acquired it. Find out later my sister has Sarcoidosis, Breast cancer ( in remission) , Hodgkins disease. A younger cousin who passed away, she had both Sarcoidosis and Lupus. She was very young, early 20's. The first 5 years were challenging because of serious physical, which led to emotional challenges. You see, I'm 5'1". Before Sarcoidosis, I taught Aerobics, and also taught dance. Friends and students referred to me as the 2nd Debbie Allen. While being a Junior High School Instructional Assistant, I started my own dance troupe., made up of 7th 8th grade students. They loved the experience. My last year at the school, for Black History month, I produced, directed, choreographed various music styles beginning with Africa up Mr. Jackson himself. One of the art students designed & drew the background scenes for each dance. It was the first time, I was told that a non-teacher was ever permitted to stage a 2 hr program in the school's auditorium. I was a PROUD mommy. One day at practice, I was taken to the hospital, they said a muscle spasm. I was showing a flying leap and a pain hit me. A few weeks later an excruciating pain in my shoulder area. The doctor had x-rays done, only to be told I had something called Sarcoidosis. I was admitted and kept in West Jersey Hospital, Ephraim Avenue, Camden, NJ. My first bronchoscopy was performed, no sedation. Tests, tests, and more tests. I was put on 10 mg Prednusone for maintenance. Oh Ms. Smartee, began to feel better, so I stopped taking the medication. A NO! NO!. I did myself more harm than good. It was the school nurse who educated me about Prednisone.. You just can't stop midstream. Now I was put on 80 mg daily. So now because of my voracious appetite, I went from a size 8 to a 16. These were my worse two years. I didn't want look in the mirror. I was called 'Chipmunk Cheeks'. When I used to watch the show 'Fame', I would sit and cry. Medications galore. One major excruciating problem, Anything I ate I was in pain. My routine for at least 3 months was to lie down on the floor, and writh about for 45 minutes. Come to find out, I had a Dueodenal Ulcer. Went from Taganent to Zantac, Lactaid Milk (yuk) An unexpected opportunity came for me to go to a business school. Not looking to get a lot out it, but I did! Before I graduated, I was placed on the President's, then Dean's List with a 3.6 Average. But this was not the height of my making a difference within myself. To get to school, I had to catch a shuttle bus. That would be located at Olney & Broad Street. To get to and from Plymouth Meeting was about 50 minutes or so. For whatever reason this particular day returning from school, I didn't have enough money to get Septa. Picture this: 5'1" about 180 lbs. I had two full bags of books, and had on shoes with 2 inch heel.. To get to Marshall Street. What was I going to do? I walked. With a full bag of books in hand, I'd walk 4 blocks, Stop, so and so forth. This continued, me fat and struggling for every breath. I tell you, the victory was when I finally made it to the corner of my block, I celebrated like it was 1999!! From this point, I knew I had accomplished something greater than myself. This is when those 5 above-refernced facets began. My POSITIVE attitude has never changed, # 1 my spirituality. Before our graduation, I had lost weight, my instructors did not know who I was. I tell you, it was my personal victory! And although, I have more health issues now, I, like you Mr. Harris, am happy to share to let folks know they too, CAN get through this!! Please embrace these five facets. They have tried & tested. The best to you all. If you ever wish to cry, vent, share, I'm here. I will respond. Feel free [email protected]

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Charlton Harris avatar

Charlton Harris

Thanks for reading, Joeann. Man, your experiences are right from my neighborhood! I'm about 5 min from Broad and Olney. If you're still in Philly, please reach out to me, we should definitely chat about our experiences with this condition. I've been really blessed living with this issue and would love to share what has worked for me thus far.
Please continue to read and comment, there's nothing like homegrown honest feedback!
Stay Blessed and encouraged!
-C-

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Ida Clowney avatar

Ida Clowney

Have had sarcoidosis since I was 29
Stage2 .now stage4 65 yrs
Old. living my best life 🤗🤗✌👍🏼🤟
I fail in love with me 😊😊🙏🤗👏🦋🤗🤗

Reply
Charlton Harris avatar

Charlton Harris

Thanks for reading, Ida. I'm 57 and I'm hanging in there. I don't think I've ever been given a "stage" of where I am with sarcoid, but I'm guessing I'm up there since my lungs are pretty much damaged. It's all about enjoying life and not falling for the mental pitfalls that sarc will bring!
Stay blessed and encouraged and keep living!
-C-

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DebbraP avatar

DebbraP

Charlton, thanks for the good read. You bring up a lot of good points. Sometimes we are our worst critics and our own enemy. Sometimes tho, we have to toot our own horn and point out our achievements to others. But first we have to educate others on our condition so that they'll understand. Not just understand our medical condition but what are achievements for us now. And that in itself is a challenge and can be one of the biggest problems we face. In fact, I've tried explaining it to my own family that there are days when I am physically limited and instead of gaining an understanding or their help, I was told that I am only "playing victim". My husband recently passed and I was going to be moving in with a brother and his family. They won't have me now because I am "playing victim". Never mind any of my achievements while battling The Beast. So now I will be navigating this Sarcoidosis Journey as a homeless person. I guess with the diagnosis of Sarcoidosis there comes challenges we could not have foreseen or even imagined. Hope to be back and commenting here but I'm having to take a little detour for a while. Take care and keep writing!

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DebbraP avatar

DebbraP

Stage Four is permanent scarring/fibrosis. Doesn't mean you are going to die but the scarring is irreversible. I have Stage Four and breathing with about 49% lung capacity, thus the reason for oxygen 24/7. But it isn't the end of the world. Only ticking off rude and insensitive family members are but not Stage Four Sarcoidosis.

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DebbraP avatar

DebbraP

Update: After a few nights at a hotel, a family who barely knows me took me into their home. A miracle! I hope to be approved for Widow's Benefits so I can move into a cheap apartment of my own. Meantime, I am with my wonderful "new" family in their warm and loving home with a roof over my head, a room of my own, food AND my oxygen concentrator. I am very wore out, can only walk about 30 feet and need to rest but have now somehow managed to avoid being homeless on the streets and looking forward to a new chapter in my life -all while having Sarcoidosis! It can be done! Will I write a book? I don't know but I will tell people my story. I'm still living it. Can't wait to tell my doctors...they will probably throw a fit but the fact that I'm still alive and planning a future ought to put their minds at ease. Well, I said "ought to". You know how doctors are...

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Charlton Harris avatar

Charlton Harris

Hey Debbra,
FANTASTIC NEWS!! I'm overwhelmed by your recent blessings! I pray that things get even better for you! Yes, start writing that book-I have, and don't forget to tell your doctors of your blessings. You're proof that living with sarcoidosis isn't the end-all of everything we've accomplished.
Keep the blessings coming, keep telling your story, and stay grateful for a wonderful family!
Peace and continued blessings!
-C-

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