I Don’t Have Anything to Prove While Living With Sarcoidosis
Chances are you’ve done a lot in your life, and you have more living to do. I guess that’s why folks have bucket lists.
Some will say I’ve been lucky, but I say I’ve been blessed. With sarcoidosis, one health issue can lead to another. It’s important to stay focused and aware.
In battling this condition, it’s common to feel we have something to prove: that sarcoidosis hasn’t taken the best of us.
Usually I don’t think I have anything to prove to anyone besides myself. But sometimes pulmonary sarcoidosis makes me feel like I have to prove to my family and some friends that I’m my old self. My health has altered how I do some things, but I’m still the same dude. When your health changes, you should change with it — to your advantage.
Before I was diagnosed with this condition, I was always the life of the party. I still am! I was all over the place. I brought the good times, the laughs, and occasionally the wisdom that some sought.
I never worried about having sarcoidosis until I started regularly visiting Temple University’s Lung Center in Philadelphia. My initial doctor was considered one of the best pulmonologists in the hospital. He was around my age, and we developed a very good rapport. He mentioned that down the line, I should consider a lung transplant. I conveniently placed that suggestion in the back of my mind. I was having too much fun living and wasn’t going to miss a step.
Before my diagnosis, I had a great job. I would go so far as to say it was my dream job at the time. I was working in advertising and loving it. I fit right in among the creative misfits. I became a homeowner, got married, raised a family, and managed to save a few coins. As far as I was concerned, I was doing everything a young man was supposed to be doing.
Then life got in the way, and I had to make adjustments I wasn’t expecting. As I often say, when you least expect it, expect it. I had to come to terms with the fact that my life was going to be different. It didn’t happen all at once, but at some point, I knew that things were going to really change for me.
I often look back on years past. I had a ball! I enjoyed my life from my teens until my mid-50s. I was having fun until sarcoidosis reminded me it was present. I was still the same person, just living with this condition.
Oftentimes, those of us with sarcoidosis let the condition dictate our future. I can say from firsthand experience that this balancing act is stressful. I’ve had to put myself in “timeout” several times — not because I didn’t care anymore, but because I simply was scared.
Under these circumstances, it’s important to develop new coping skills. I try not to let stress get the best of me, but sometimes I just can’t help it. It could be the result of sarcoidosis, adjusting to an ever-changing lifestyle, or simply the pressures of life. Who knows? Admittedly, some of my old habits are harder to change than others. I’m sure I’m not alone in that assessment. I think it has a lot to do with my frustration with all of the changes.
When I look back over the last three years, my fear of living with a chronic illness has changed to embarrassment. I’m thankful that I was able to make some needed changes, but embarrassed that I haven’t made some of the most important ones yet.
The biggest change I need to make is acknowledging that sometimes I’m the problem. When you acknowledge a problem, you can address it straight on. The longer you let the problem sit unaddressed, the more it grows — and sometimes it can grow into something you can’t wrangle. I don’t want this to happen to any of us. Deal with it, and be done with it!
For me, this means moving issues from the back burner to the front. Remember, everyone has an agenda. With energy and determination, it’s time to move your agenda to the front of the line, no matter what anyone says.
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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.
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Comments
Amy Jennings
Great article. I'm sorry that you have to live with sarcoid, but it is nice to know that I'm not the only one feeling this way.
Charlton Harris
Thanks for reading, Amy. Please know that we are not alone in this battle against of normalcy. We have to stay focused and determined. Ours is a battle we can live with!
-C-
Shanell Johnson
I understand totally Charles. I was diagnosed in 2008 and changing my lifestyle was a must. I'm adjusting to time, place, and circumstance. My body notifies me when I'm overdoing it so now I'm more chill. Thank you for the article.
Charlton Harris
Thanks for reading, Shanell. I'm still trying to adjust certain areas of my lifestyle and it's not an easy task. Remember, trust your body 49% of the time and your mind 51%. Otherwise, your body will tell your mind what you can't do, while your mind is eager to try more. Keep living and keep moving- we're all in this together!👍🏾
-C-
Don Elias
Don’s Sarcoidosis Story
My sarcoidosis story is different than most I have read about. When I was about 40 years old something strange showed up on a routine chest X-ray. The films were viewed by my GP and I assume others and I remember the diagnosis was either Cancer, Histoplasmosis, or Sarcoidosis. After a few weeks, my doctor said they had settled on it being Sarcoidosis and when I asked him how he knew for sure, he said it was based on a "Clinical Diagnosis." I assumed that meant that they had ruled out the other two possibilities. I had no symptoms and I remember that shortly after the final diagnosis we went on a vacation to Utah that we had planned on earlier. I remember carrying my youngest who was old enough to walk but not ready for the hike at Mt. Tipanogis which rises about 1000 feet above the mile-high parking lot. I had no symptoms and the hike was not a problem for me even with my precious load.
When I returned to normal life after vacation, I would see my pulmonologist (my other doctor had retired) and he would administer a breathing test to me. When my results indicated a downturn in breathing he would put me on meds (primarily Prednisone) until he determined I was again stable. It was kind of a guessing game. The bottom line is now I am 87 and short of breath for most things but I have survived. I played basketball for fun into my 60’s.
I never had pain but one of the reminders is that I have lymph nodes that are enlarged all around the periphery of my lung cage. They are somewhat tender if I push on them too hard.
Tonia Thomas
I appreciate your article. I am learning to adjust. I was diagnosed 1/2021 during the Pandemic, it was very difficult getting in to see Specialist. I turned 50 and started getting sick 9/2020. I'm just beginning to learn how to adjust. I led a very active life and this brought me to a screeching haught! Thank you for your advice.
Charlton Harris
Thanks for your comment, Tonia.
Please continue to read and hopefully, I'll continue to post stories that are reflective of your experiences. You can still lead an active life. . . with some limitations. I do, I just move slower. I'm now in discussion with my pulmonologist about rehabbing with water excercises. Don't know how that'll go since I use oxygen in the gym, but if I can I will. I used to swim every other day, and I miss it terribly. I'm not ready to quit on that yet!
-C-
Linda Violante
Wonderful article. You said everything I would want to say. My views on life have changed and no matter what the outcome will be, I am going to be a better person. I have Sarcoidosis in my lungs and now in my left heart muscle. I started last week my treatment plan, having been seen by a team of various specialists while I was in the hospital for 17 days. Feeling very blessed and really in a good place.
Donna Gauthier
Thanks so much for the article! I’ve been living with sarcoidosis for 14 years now and my life has certainly changed…. I too had to learn to listen to my body and slow down…. It’s been an adjustment, but I’m learning something new every day!
Donna
James Parr
I have a suspician that my lung SARC was caused by boat bottom paint .Sanding this stuff is nasty .It contains copper. You look like a black S M U R F. after you do it.Always had M 95 mask. Had the boat 20 seasons before I was diagnosed. Its gone but last x-rays tell I had it.
Gloria Hernandez
I so much appreciated your post. I was diagnosed after a huge lump appeared between my eyebrows on the bridge of my nose. This was 22 years ago, I am now 74.I was evaluated by several doctors, CT scans, MRIs none were conclusive. Fearful it might be cancer an ENT Nuero Surgeon referred me for a Pathological test. A pathology physician preform a needle biopsy. I had to take my 24 year old son with me as I was afraid to hear the diagnosis. H was in the room and held my hand as she preformed the procedure. Unfortunately she had to come back into the room to preform a second biopsy. When she finally came back in the room she said I have some good and bad news. The good news is that it is not cancer. The bad news is that the tests are inconclusive. She could not give me a diagnose. She referred me back to my specialist. I returned to my referring doctor who recommended surgery, going through my nasal passage. Fortunately he had a specialist to assist as it was so close to my brain. My daughter and sister-in-law were in the waiting room. My son had been on military leave and had to leave before my surgery. I was sacred to hear the diagnosis. It was difficult for me to wake up after the surgery. My doctors had to talk to my family about the diagnosis. It was my daughter that told me I had sarcoidosis. I had experience of almost 25 years at a Veterans Hospital in medical administration n San Antonio, Texas. I couldn't believe I had never heard of this diagnosis.
Fast forward, years of office visits to a pulmonologist and rheumatologist for treatment. After years of prednisone, breathing treatments, Breo and emergency inhalers for wheezing and chest tightness has helped. The past two years I have developed numerous problems. My feet and ankles are swelling. I am also a lupus patient. Conflicted with not knowing if symptoms are related to lupus or sarcoidosis. My renal specialist says my kidneys are fine, the swelling is not related to water retention. He advised I discuss with my rheumatologist. I advised. my rheumy about the possibility of sarcoid was presently active.. He had lab work done this past week. I am waiting for results at this moment. I had not consider that my ankles and feet swelling was as a result of sarcoidosis. Until I read a Sarcoidosis Newsletter last week about a woman who was experiencing the same problems with my ankles and feet. She posted a picture of her feet.. Needless to say, it is not until now that the sarcoidosis has taken the upper hand in my life. With that said I have lived with Lupus 38 years, never allowing it to take over my life and the same goes for sarcoidosis.
DebbraP
Gloria Hernandez: Did you or are you on a prescription Diuretic? If so, how long have you been taking it and dose? I know you said your Nephrologist told you it wasn't water retention but then what is causing your feet/ankles to swell? I have been on Furosemide for two years, my feet/ankles and lower legs swell. I also follow a low-to no sodium diet. If I didn't take a diuretic and watch my sodium, I'll bloat up big time.
DebbraP
Great points you bring up, Charlton. Once I accepted that I have Sarc and have to make adjustments, seems it has gone a little easier. At least emotionally and that's half my battle right there. MY battle. It was my ex-family who didn't accept my Sarc and new way of doing things. I mean face it, no amount of endurance training is going to knock it out. And yes, that's what they thought I needed, "endurance training" and that my stopping and resting (pacing myself) was just an act and said I was only "playing victim". Now, I will admit that exercise is always good but no amount of endurance training is going to cure Sarcoidosis. So I stay mobile in ways that I can and try to add a little more activity here and there but know my limits now. MY limits, not anyone else's. We have to learn what our limits are so that we have a sort of starting point to work on for making progress. Unfortunately, our friends/family and I don't even think our doctors know what our limits are. But once WE know, we can navigate this journey just a little more easier emotionally. And with that comes just like you said, new coping skills. COPING skills, not a cure. So I may have limits, I may do things slower and certainly differently now, but I am gaining coping skills. And a life. Others may not understand me or even doubt me but like you, I have nothing to prove. Certainly not to them. And I don't intend to fail myself. Some days are better than others, it's just a part of living with Sarc but I said "living".