At this time last year, I was in the hospital. I spent three days there, including during my son’s birthday.
During that time, my primary pulmonologist broke the news to me that I didn’t qualify for a procedure I was looking to have at this particular hospital, because I was considered too high of a risk.
After talking about it, we decided I should pursue a second opinion to see if I could be a candidate for other respiratory therapies. Fast-forward several months, and I eventually reached out to the Harron Lung Center in Philadelphia. There, I went through a battery of tests and was offered an opportunity to participate in their pulmonary rehab program. I gladly accepted.
As a new participant, I found their program a bit more rigorous than what I’d been used to at Temple University’s Lung Center. Both are very good programs, and I would highly recommend anyone with pulmonary sarcoidosis to take advantage of a pulmonary rehab program. Not only does it strengthen you physically, but it also strengthens you mentally.
A lot has happened in the past year, and it seems like the same issues are spilling over into this year. For me, the last year was full of uninvited adventures.
At the beginning of 2020, when I was hospitalized for days, my son celebrated his 28th birthday in my hospital room. After that, we were hit by a pandemic that took over our lives. I wasn’t able to exercise like I used to do, and having pulmonary sarcoidosis made me extremely vulnerable to the new virus. Needless to say, stress and fear consumed my life just like it did to everyone else.
When I started the new program, I was energized and excited that finally I would be getting some physical activity again. Now, I look forward to going every week. I work out for about an hour and a half, and then I get a lesson on the lungs, respiratory health, and breathing exercises.
This past week, however, I hadn’t been feeling like myself. I could tell my breathing was becoming labored, and I would get out of breath more quickly than usual.
While in rehab class, I mentioned to the therapist how I was feeling. The best I could describe to him was that I felt full and bloated. I was concerned and nervous, to say the least. I started wondering if I had suffered a slight spontaneous pneumothorax, which is a feeling I’ll never forget, having gone through it before.
My mind started to play tricks on me. I felt vulnerable and out of control.
Chronic illness and fear
The therapist mentioned the incident to my new pulmonologist, who scheduled me for a stomach X-ray. A day later, I received a call from the pulmonologist’s office. The nurse practitioner said the X-ray looked fine, indicating a normal gas exchange in my stomach. I felt great relief upon hearing that news, but I still felt the same: out of breath, bloated, and uncomfortable.
At that point, it’d been several days, and I still hadn’t felt any relief. My biggest concern was feeling increasingly out of breath. As the days passed, I found myself using oxygen more than usual, and I remained at home where I felt safe. I did manage to get my COVID-19 vaccination during that time, which made me feel a little better. But for the most part, I felt trapped. I was at the mercy of my fears.
Remember, it’s not just you
I decided to read one of my past columns about PTSD and how it affected me. Then I did some Googling and came across an article about chronic illness and mental health. Needless to say, that made me feel more at ease after reading it. I realized that I’m not alone in this battle.
While at rehab this past week, I started feeling a little better. I realized that the more physical I became, the better I started to feel. It seems like I needed to work my body, particularly my core. Reading my own writing and the article from Google reminded me that I had forgotten the most important thing about rehabilitation: You gotta keep moving!
It’s been a week and a half since I was feeling off, and I feel better than I did a few weeks ago. I guess this is the time when I should think about all of the things that made me feel somewhat complete and not focus on what keeps me feeling incomplete.
No matter what you’re going through, remember, you have the tools to change the narrative. It’s time to put those tools to work.
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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