Improving my quality of life with sarcoidosis means no days off
Lessons learned from hitting the gym after a recent hospitalization
I was recently admitted to the hospital twice in one week. Apparently, I had started to develop subcutaneous emphysema, which occurs when air gets trapped under the skin. This can cause crepitus, a crackling sound produced by pushing on the air-filled tissue.
In my case, it’s a result of my damaged lungs from pulmonary sarcoidosis and spontaneous pneumothoraces. The subcutaneous emphysema caused my throat, jaw, and cheeks to swell with air, and the pressure in my throat changed my voice. When I pressed on the inflamed area, it sounded like Rice Krispies.
I was hospitalized in 2018 for the same problem, and doctors intubated me because they thought my airway might be compromised. Thankfully, this time wasn’t as critical. The air didn’t spread any further, and I was only admitted for observation.
An important reminder
During my hospitalization, I had time to think about what my next steps would be in terms of rehabilitation. My gym routine and diet would continue to be my foundation, but I knew I had to do better in other areas of my life. So where do I begin?
After being discharged, I went to the gym and talked with another member I see often. He works out regularly and walks twice a day when the weather permits. He told me that he admires me for coming to the gym with my oxygen tank and working out as much as I can.
During our conversation, we agreed on one simple thought: If you’re not careful, your mindset can dictate how you spend the rest of your life. It became frighteningly clear to me how easy it is to do nothing.
While I was in the hospital, all I did was watch television. It was convenient because there was no charge for its use. It was easy to lie in bed and do nothing but watch TV all day.
As the man and I kept talking, he made the point that if criminals never take a day off, why should we? It made perfect sense. Each day I did nothing but watch television was a day off from caring for my health.
When you’re living with chronic illness, stress, or mental health issues, it can be easy to simply accept the condition. That mindset can paralyze us and prevent us from taking action. If you think your illness dictates your life, then it will. Sometimes you have to challenge your thinking to become a better version of yourself.
The man at the gym told me his main reason for working out was to get out of the house, to do something. I agreed.
My family and friends often tease me about being unable to sit still. Even with my health conditions, I just can’t sit around and let the four walls close in on me. I fell into this trap at the hospital, but typically, I’d rather be outside doing something — otherwise, I remain focused on my health issues and not on improving my quality of life.
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
Susan Bassi
Your articles are the best. They make so much sense. I have been trying to do the same, not stop moving and have a goal for each day to do the best I can. My body is always screaming at me to lay down and let it rest. I do look forward to the end of the day when I can do that or a break but I think it's important to keep moving for quality of life. Thanks for your articles. They help motivate us.
Charlton Harris
Hey, Susan!
Thanks for reading my column. Like you, most days my body wants to dictate my daily adventure, but then my stubbornness kicks in and away we go! Don't get me wrong, I do listen to my body, but if my tells me to watch television and relax, then I have to challenge it. Like I tell most folks, you'd be surprised how good you feel when you start moving. Please keep moving! Remember, sarcoidosis loves an inactive body, so keep yours moving. . . just take your time!
Thanks for reading, and Peace to you!
-C-
Denise MacRae
I am 70 years old. I have had the disease since 1989. It wasn't until 2002 that I got hit bad with it. I had gone out jet skiing with my son for his birthday. I became weaker and weaker as the day past. By the time we left hours later I could barely make it up the hill back to the truck. I learned years later that sarcoidosis uses the vitamin D from the sun to make granulomas. I had not been able to work for about a year, as I was a carpenter, so I had no insurance. I decided to go back to being a graphic designer and go to school for it to give me confidence on my job interviews. I applied for a student worker position with the Public Affairs Dept at the College. They did not take out taxes. So I worked for no retirement. This was 2000. By 2014 I had to go on disability. To make my story short I learned that exercising was what causing my lungs to get granulomas. Not everyone is going to be the same but the fact is this, when you exert yourself you need more oxygen. If you do not monitor yourself you will blow a hole in your heart like my mother did. I am now up to 10L to keep myself alive. I had in 2019 lost all of my strength and collapsed. They hospital treated my like a hypochondriac and would not monitor my oxygen. They asked 3 times to walk for them. By the third time I told them no,. "I already did it twice and you still think I am faking it. You have no idea what stress my body is going through each time I do it." They sent me home even though by the time they did I had completely lost all strength. I could not even roll over in bed. It all boiled down to the fact that I told them I had sarcoidosis and my symptoms were. They felt I was self diagnosing myself. Anyway this has happened over and over again.
Laurie Brunelle
Another home run Charlton! Always so inspiring. It’s so easy for me to make excuses why I can’t go to the gym but knowing you haul your oxygen into your workouts makes my reasons not to go so ridiculous. I too suffered a pneumothorax due to weakened right lung from numerous infections and cavities. After two weeks trying to revive my lung surgeons decided to remove it. The recovery was pretty tough but I’m here to fight another day. Thank you for your articles and motivation. Getting going now to head to the gym 💪
Charlton Harris
Hey, Laurie!
Thanks so much for reading my column. I've had spontaneous peumothoracies in both of my lungs along with eight chest tubes, and I have no problem telling you that YOU ARE THE MVP! I look at sarcoidosis as another one of life's obstacles that we have to deal with. This is why I try to face every day like it's a new adventure-because it is. As long as you have the will, the strength and the desire to hit the gym, then do it. I've learned over the years no one can make me feel better about myself than me. . . and that includes any and all accessories that I require that helps my journey!
Every day is a new opportunity for self improvement-treat it as such, just take it slow!
Peace!
-C-
Francis Thompson
This is the first time I have read one of your articles and I just wanted to commend you for your spirit and attitude. I was misdiagnosed for a few years and found out that it was Sarcoidosis when I found what I could only describe as a marble on my shoulder at the clavicle. It was removed and sent out for analysis, it was three lymph nodes calcified and stuck together. The report added a new word to my vocabulary, sarcoidosis. This was in 2006 and I grew up in Philadelphia and now live across the river in NJ.
This burden has been life altering and I used to wake up and ask why I had go on another day. Most people don't understand how this illness can destroy you will to live and drive you into a deep depression; not that it is that bad; just relentless. I dealt with my demons and came up with a plan that I thought would help and it did. I am still and will always be sick; however, that is who I am and I will not let it rob me of what life I can have. I am always thankful for what I have and drive my doctors mad about constantly wanting more. The impression I get from your article reflects an attitude of OK I have Sarcoidosis, I just have to adjust to my current physical gifts I have left and live in the present. I applaud your sprit.
Charlton Harris
Thank you for reading, Francis!
When I was first told about sarcoidosis, I really didn't understand anything about the condition; moreover, how much of your physical self could become compromised, challenged or lost. I think the biggest thief that we deal with is frustration. We get frustrated more about what we lost and not appreciative of what we have left. As the saying goes: "if you can control the man's thinking, then you can control the man!" I've been guilty of giving in to my thoughts. . . like most folks dealing with a chronic condition.
Thank you for reading, and please continue to do so and remember, your comments and thoughts are more than welcomed!
Peace!
-C-