The Biggest Challenge of Sarcoidosis Is Right There in the Mirror

Charlton Harris avatar

by Charlton Harris |

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I didn’t realize how pulmonary sarcoidosis would affect my lifestyle until about three years ago. For years, the thought of this “obstacle” didn’t affect me. But that changed on a dime in August 2017 when I had my first spontaneous pneumothorax.

I wondered how I would live my life moving forward. It’s been a big pill to swallow, and denial is something I live with. We all do!

Everyone denies those uncomfortable thoughts about our respective conditions that worry us, but sometimes we can use those same thoughts as a guide for how we should continue living our lives and moving forward.

I think most of our denial stems from four things: our physicians, our medical appointments, our test results, and the new way of life we’re supposed to adapt to. If we were to calculate the time we use for doctors’ appointments and waiting for test results, that in itself would equal an eternity. Maybe that’s the moment we subconsciously take ourselves out of the fight of living with sarcoidosis and just resolve that “it is what it is.”

Every day we wake up, sarcoidosis does, too. Who’s the better competitor?

The mirror tells the truth about your whole story!

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It seems like every day I learn something new about this condition. There’s no known cure, and it typically comes and goes like a needy friend. And like that friend, it tries to obtain all I have to offer, leaving me empty. Like that friend, I need to treat the condition, not the symptom.

One thing I’ve learned about this condition, like so many of my fellow sarcoidosis warriors, is that I never know how it will affect my lifestyle or my mental and physical progress. In the meantime, I’ll slowly watch myself being challenged by everyday activities that I normally wouldn’t have given a second thought to.

Who doesn’t like a good challenge? It makes me feel like I still have something to contribute.

Personally, over the past three years, I’ve watched myself become more of a homebody as my level of physical activity has dwindled, and I’m not pleased. The past year didn’t help matters with the pandemic lockdowns, so now it’s up to me to make the change I need to get back on track.

I’m feeling much better, thank you!

I’ll make it happen, I owe it to myself and to those who value my life.

It’s important that we at least try to do some of the things we find difficult. I know it gets frustrating most of the time living in yesterday, but we owe it to ourselves to at least try. Of course, that’s easier said than done.

I recently heard some sad news about an older couple I met in December 2019 at the lung center. The husband had a lung transplant in May of that year, and we had a brief conversation about his experience. I told him that the same day he was getting transplanted, I was being admitted to the hospital for a collapsed right lung.

He told me he previously couldn’t walk 5 feet before he had to stop to catch his breath. His wife nodded in agreement. After the transplant, he said he felt the best he had in years. He urged me to consider transplant, saying it’s a game-changer.

I’m not sure if he suffered from pulmonary sarcoidosis or some other lung disease, but looking at him at age 80, his story really hit home for me. He was back on the mend and in the gym, slowly getting back to his old self.

The news I recently heard was that his wife had passed away a few days prior. I believe she was his primary caregiver. The news left me speechless.

It’s strange how full circle some things go. In May 2019, I was being admitted for a collapsed lung the same day he was being transplanted. In June 2019, I wrote a column about the passing of a caregiver. Six months later, I met the couple, and a year later, she passed away, leaving him to get back in the game.

I’m blessed to have a support team that lives with me and understands my challenges. The one thing I told them is that I don’t want to be a burden to them. At 57, I still have a fun-filled life with daily adventures, laughs, and troublemaking, and they should, too.

I do more for myself than I ask for, and sometimes I need help. But at no times can my family, friends, or caregivers say I gave in. I have to keep moving. We all need to keep moving.

Life is not a spectator sport — it’s an adventure.

***

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

Bonnie J Berry avatar

Bonnie J Berry

I have had Sarcoidosis for many Years. It is mostly in My Lungs. I always said it was a good thing I was never a Smoker. Many times People who have Sarcoidosis also get Hairy Cell Leukemia. This is on the Cancer list for People who have the Roundup problems. Will not hurt to get checked.

Reply
Charlton Harris avatar

Charlton Harris

Thanks for reading, Bonnie. I must admit I've never heard of that form of cancer, but I surelywill ask my docs about it. I'll also research it myself so we can talk about it.
Thanks again for reaching out!
Peace!
-C-

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Paula Sokol avatar

Paula Sokol

Thank you for this article. I am still refusing to accept it. For the past ten years I’ve been medicine and oxygen free and live my life maybe slower but still pushing on, pushing through.

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Charlton Harris avatar

Charlton Harris

Way to go, Paula.
Like you, I move a little slower but I refuse to let something foreign dictate my living. I know it's there, but I have to live for me. I was med free until this past May, but that's for something else and I should be off soon.
Keep up the fight and keep living!
Peace!
-C-

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Owen D Sotomayor avatar

Owen D Sotomayor

Hi Charlton

Thanks so much for sharing your story. I was left wondering what happened after your collapsed lung. Is there anything medicine can do to repair a collapse, or is a lung transplant the only solution?

Wishing you the best,

Owen

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Charlton Harris avatar

Charlton Harris

Hey Owen,
They did a procedure called a pluredesis which is known as "sticky lung". I also got a few endobronchial valves. They saved the lung but I use oxygen when needed. Not a bad trade off! I did a podcast in June where I talked about it. I hope you'll check it out. Thanks for reading and please continue!
-C-

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Mark Lavelle avatar

Mark Lavelle

I’ve been going through the same but for me it has rapidly took control. I am now bedridden a prisoner in my bed on oxygen 24/7.
If I knew how to end it quickly I would seriously consider doing so.
Good luck to all who have this horrible condition.

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Charlton Harris avatar

Charlton Harris

I'm so sorry you're experiencing this, Mark. Please don't give up-keep fighting! I was recently told of a family member that is currently in ICU because of COVID. What's worse, she's a transplant recipient. No matter what your condition is, there's always someone that's not as blessed as you. Keep fighting my friend, you deserve YOUR best.
Peace to you Mark!
=C-

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Laurie Brunelle avatar

Laurie Brunelle

I so enjoy your articles Carlton. They're uplifting but real at the same time. I was diagnosed with pulmonary sarcoidosis in 2001 and was in denial until about 3 years ago when I struggled with one lung infection after another culminating in a right lung pneumonectomy this past December. Wow what a surgery. I used to think I was tough, but not anymore. So I'm learning to scale life back and am blessed to have a wonderfully supportive husband, family and friends in my corner. Please keep inspiring us all with your wonderful stories Carlton. All my best!

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Charlton Harris avatar

Charlton Harris

Thank you for reading my column and your kind words, Laurie! I must admit that sometimes when I wake up, I, too am in denial about my condition. I think the denial is my refusal to let it get me down. As long as I'm breathing, I'm living and if I'm living, Remember, we are tough. I've had both lungs collapse and a total of eight chest tubes. All things considered, we're both tougher than we give ourselves credit for, and our support systems know it too!
Thanks again for following!
-C-

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Lynn avatar

Lynn

I was diagnosed with pulmory sarcoidosis just last year I've just stopped the steroids after 8 months I'm now better.i hear so many sad story's about this condition and not any positives is it always this bad or am I in denial that I will become very ill with this in the future,my consultant said their is no reason why I can't lead a normal healthy life,I wonder is this true or am I in denial?

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Charlton Harris avatar

Charlton Harris

Hi Lynn-
What you have to remember about sarcoidosis, is that it changes on a dime. One day you're feeling at the top of your game and the next day you're winded and feeling lethargic. You can lead a normal life with this condition-I have! Just make sure you KEEP MOVING. Sarcoidosis hates a body that moves. If you stay stagnant and settled, chances are that you'll experience further issues. Keep moving, stay positive and KEEP LIVING-THAT MAKES ALL OF THE DIFFERENCE!
Prayers to you!
-C-

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Pat Duke avatar

Pat Duke

Very well said. You nailed it.

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Charlton Harris avatar

Charlton Harris

Thanks Pat! We have to stick together!👍🏽💪🏾

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Jaclynn carroll avatar

Jaclynn carroll

Mark, I truly hope that in the next few years they will have a breakthrough for this disease that will help you. I am so sorry to hear that you are suffering and sad.

Reply
Charlton Harris avatar

Charlton Harris

Like Mark, we all experience spells of defeat.
I believe Mark has it inside of him to keep fighting. We all have to keep fighting this condition. . . it comes with various stages of frustration but we can do it if we ALL STAND TOGETHER IN SUPPORT!
Peace and prayers to you and Mark!
-C-

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Linda Daniels avatar

Linda Daniels

This is the first time reading your column. I liked how you express yourself. I was just diagnosed with Pulmonary Sarcoidosis. I’m not in denial, I just need to learn more about it.
I look at FB support page and read of others’ conditions and experiences. Many people who have this disease. I’m in a special group.
Thanks for all your sharing information.

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Charlton Harris avatar

Charlton Harris

Thanks Linda fir reading. Yes, we are in a special group of folks and I look forward to inspiring others with this condition to get up and live. Please keep reading and commenting and I'll do my best to continue to uplift and inspire us all!
Peace-
-C-

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Linda Daniels avatar

Linda Daniels

Thank you for all this information. I need it. I’ve just been diagnosed and I want to learn all I can.
I’m scared about not knowing enough.
I appreciate everyone sharing

Reply
Linda Daniels avatar

Linda Daniels

Thank you for all this information. I need it. I’ve just been diagnosed and I want to learn all I can.
I’m scared about not knowing enough.
I appreciate everyone sharing
Not a duplicate comment!!

Reply
Charlton Harris avatar

Charlton Harris

Hey Linda, it's cool to be scared, most of us are. Sometimes I get scared multiple times doing the day, but I just shift my attention to how well I can still manage my life. I'm not 100% and I'm not 20%, I'm doing my best, and I'm still making folks laugh!
Be kind to yourself, you deserve it!
-C-

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DebbraP avatar

DebbraP

I am 57 and was diagnosed with Lung Sarc 2019. Confirmed by biopsy via Bronchoscopy. I am on Prednisone and several other meds, including Methotrexate and oxygen 24/7. My husband was my carepartner and recently passed away. Because I shouldn't live alone and can't afford to, I am having to move in with my brother and his family now. I can still do most things myself but cannot walk distances or exert myself that much. I am not in denial. In fact, I learned that accepting that I have Sarc has helped me to move forward to learn how to live with it. I no longer can do all the things I want or even need to do but I do not beat myself up over it. I've learned to do what I can and sometimes that means doing things a little differently and of course, more slowly. My advice? Surround yourself with positivity, avoid anything negative, including negative people and too much news headlines. Stay on your feet and out of bed. You don't have to run marathons or even exercise if you're not up to it but be up on your feet MOVING around! Stay mobile in some way. Do what you can for yourself but learn to pace yourself so you can be independent. Pick and choose daily chores wisely. Educate your family and friends because having some sort of support network is critical. You might have to continue educating them -several times. Don't stop, And stay hydrated. Lots of water. Engage in a relaxing and enjoyable activity that won't require too much strain or exertion. Laugh every chance you get. You may or may not get better so don't think too hard about that because that can lead to negative thoughts and make you feel worse. Just "be" every day and get along. Did I say laugh every chance you get?

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Paul Varadi avatar

Paul Varadi

Thanks for the article and your positive attitude.
It is an inspiration for me!

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Charlton Harris avatar

Charlton Harris

Thanks for reading, Paul. I hope I can continue to inspire folks like I try to inspire myself! 👍😉

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Bàrbara Weitkamp avatar

Bàrbara Weitkamp

I was diagnosed with pulmonary sarcoidosis last October. Does it ever go away?

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Charlton Harris avatar

Charlton Harris

Hey Barbara!
As far as I know, it doesn't completely go away. It goes dormant but can resurface at any time. Just take it easy and trust your body, it doesn't lie!
Thanks for reading and please continue!
-C-

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Don Elias avatar

Don Elias

It was interesting reading all the above comments and my story is different, also. I was diagnosed with Sarcoidosis when I was about 43 and it seemed to have active periods alternating with inactive periods. So we never knew what was going on. I don't think there has been any activity for the past several years but my lungs are not in great shape but I do have never required oxygen in daily activities. I am now 87 and trying to figure out what to do when I grow up.

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Charlton Harris avatar

Charlton Harris

Don, you're AMAZING living with this condition for 44 years-I want to be like you when I grow up! lol
I was diagnosed pretty early, I think my late 30's-early 40's. I'm now 57 and I think the only reason I use oxygen is because of both lungs collapsing a year apart. . . not to mention COVID keeping all of us folks on lockdown last year. I say that to say I'm back in the gym trying to get myself back together again, but have since developed pulmonary hypertension due to the lungs. It's an interesting ride, but what the hell, life is an adventure. Stry strong young man, and Congrats on continuing to live your life!
-C-

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Linda Violante avatar

Linda Violante

I have Asthma plus I have Sarcoidosis in my lungs, but now in the left muscle of my heart. I am being treated with 60 MG of Prednisone for inflammation around my heart. I will be on this medication for about 3 months and during this time may have other drugs introduced. I feel I have a great medical support group, with Pulmonary, Rheumatology, Cardiology and Internal Medicine all treating me as a team. Your site seems to be about the lungs. Anyone else have it other places than the lungs? Thanks, Linda

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