Looking for Positives Is Important While Living With Sarcoidosis
Lessons learned from spontaneous pneumothoraces and other health setbacks
A few days ago, I celebrated the five-year anniversary of the first of my two spontaneous pneumothoraces, a result of pulmonary sarcoidosis. I can’t believe it’s been five years, but I’m happy to celebrate. By all accounts, I’m stable and doing fairly well.
About eight months after my first pneumothorax, it happened again in my other lung. To say it was a scary time is an understatement. But here I am, still enjoying life despite my illness.
Sarcoidosis has done a number on my lungs. My pulmonologist and I have had several conversations about a lung transplant, but per the transplant team, I’m not a candidate. Coincidentally, I received the news while hospitalized on what happened to be my son’s 28th birthday. Talk about an empty feeling in your soul. I sought out a second opinion from another local transplant hospital but got the same result.
After my first pneumothorax, I spent two months in the hospital. Every day, a team of doctors would make their rounds and finish my visit by telling me, “We can’t discharge you yet. We have to get your lung back up.”
After three weeks, I started losing hope for a positive outcome. I felt like this was it. I imagined myself being taken care of in an assisted living facility, and that didn’t sit well with me. It seemed like everything I’d worked for, including staying healthy, meant nothing. I started feeling lonely, empty, and depressed, and believed I would be a burden on my family. I couldn’t allow that to happen.
My health scares have sidelined me a few times, but I’ve tried not to let them affect my thinking. As difficult as it was, I managed to pull myself together so I could look forward to life and enjoy living — despite sarcoidosis.
Slowly but surely, circumstances started to change in my favor. I’ve learned to appreciate a few things on this new adventure.
Firstly, sarcoidosis is simply a setback that’s given me a new set of challenges to adjust to. Only I can determine if this condition defines me, defeats me, or makes me more determined. How I live now is the most important thing. I’ve seen positive changes happen before, and I believe that things will again work out in my favor.
Secondly, if you are determined to do your best, you’ll be your best. When I had my second pneumothorax, I’d already completed my first pulmonary rehab class. In rehab, you perform several exercises in a controlled environment that mimic your daily routine. In other words, it keeps you moving. I was always a physically active person before my health challenges. After I finished the program, I joined a gym so I could stay moving. I credit the rehabilitation program for keeping me active and determined to get better.
Lastly, the most important lesson is to take care of myself despite this disability. Having sarcoidosis is not my fault. I used to feel a little self-conscious about how I’ve changed, but I’ve learned that everything happens for a reason.
This is the new me, and this is my new adventure!
Even though it doesn’t look like a lung transplant is on the horizon for me, as long as I’m living and stable, I’m cool. In the end, self-care does wonders for the mind, body, and spirit.
Sometimes bad news can help you focus on the good.
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.