Pulmonary sarcoidosis is a sneaky character. Last week, I wasn’t feeling like myself. I was more out of breath than usual. I felt weak and could tell something wasn’t right with me. I had my son take me to the hospital, where I was admitted for a few days for observation.
With pulmonary sarcoidosis, it’s hard to tell sometimes if something is seriously wrong with me. Pulmonary sarcoidosis is a master of robbing me of oxygen and making me work harder for each breath — not to mention the sense of panic I get from the tendency of my lung function and oxygen levels to decrease.
While I was being admitted, the hospital staff performed several tests on me to make sure that nothing else was causing me to feel the way I did. Blood tests came back good and a sinus swab for the flu came back negative, so it seemed as if I just had some sort of flare-up.
The experience was somewhat scary because I hadn’t been in the hospital since 2018. But while this episode caused me some anxiety, I was able to overcome it rather quickly because I know my body and I’m familiar with medical procedures.
Settle in and settle down
During my hospital stay, I started thinking about where I am in my life and all of the health issues that I’ve been through over the years. Five years ago, I wouldn’t have imagined my life as it is now. But this is how I am now — living with sarcoidosis and trying to remain relevant to my family, friends, and myself.
I grew up in South Philly with my grandparents, aunts, and uncles. My brother and I had five friends we remained close to for life. We’re more like brothers; collectively, we’ve known each other for over 50 years. Over the years, as happens with everyone, life got in the way. We’ve had marriages, kids, jobs, and other milestones associated with adulthood, including disappointments, letdowns, and our fair share of heartbreak.
This time in the hospital was more than just a period of observation for me. I was finally forced to really think about my current health situation and my overall well-being. I thought about my childhood friends and how all of us now have health problems of our own. One is dealing with diabetes, another has multiple myeloma. The others have health issues ranging from aches and pains to blood pressure and gut health issues — and then there’s me with sarcoidosis.
We touch base weekly. All of us have been through some major life issues, but we still show up and do our best to get past whatever obstacles we’re faced with. This time I had to reach deep inside myself to realize my inner strength to be able to handle my current situation.
Dose of reality
While still in the hospital, I received a visit from my pulmonologist. He wanted to check on my progress and chat with me for a bit. I was feeling much better and by all accounts it looked as if I was getting myself back to my baseline.
He also gave me the disappointing news that I wasn’t a candidate for an alternative therapy we’d been looking into. Talk about a gut punch.
It’s been a few days since he told me, but all is not lost. I think that when we talk to our doctors we hear what they say, but we don’t listen to what they’ve said. When I heard that I wasn’t a candidate I processed that information one way without considering it from another angle. Just because one thing may not be available to me doesn’t mean that some other helpful therapy may not be available in the future.
The hardest part of my three-day hospital stay was keeping from blaming myself for my situation. None of us ask for health challenges, but like life, sometimes they appear and get in the way. I’ve come to realize that I’m at this junction in my life for a reason, and I have no reason to blame myself for my medical shortcomings.
As I sat quietly thinking about my family and friends and how I wanted to go to the gym to release the stress, it hit me: As long as I’m moving forward, I’m living. I will always have obstacles in front of me, but I have to keep moving forward. If I’m breathing and moving, I’m living and I aim to live with purpose!
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 Services, and are intended to spark discussion about issues pertaining to sarcoidosis.
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