Resolving to Save My Own Life, One Step at a Time
Finding motivation is necessary in a life with pulmonary sarcoidosis
A new year means new resolutions.
I start every year with good intentions to do better than the year before, but I made a few resolutions last year that I haven’t fulfilled. That doesn’t mean I didn’t try; life got in the way and made some more difficult to complete than others.
Having pulmonary sarcoidosis means life gets in the way quite often. Sometimes I’m out of breath, and other times I ask, “What’s the point?” It’s hard to stay motivated while trying to improve your health. For me, it’s been a five-year challenge.
“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen Keller
Five years ago I experienced my first spontaneous pneumothorax, or collapsed lung, and spent two months in the hospital. The following year I experienced another and was hospitalized for two weeks. Over the next year, I was in and out of the hospital due to the effects of the pneumothoracies and pulmonary sarcoidosis. Needless to say, I had no real goals other than trying to stay alive.
I then completed two sessions of pulmonary rehab, which I believe was the catalyst in helping me find my motivation again. I’d never realized that breathing issues can have a serious effect on your quality of life. Mine made simple things challenging, including walking heel to toe, standing on one foot, and walking in a straight line.
Daily tasks, such as hygiene, were also affected by my lung function. To my therapist’s surprise, I showered while connected to my oxygen concentrator. My motivation was to stay alive by any means necessary. By participating in the rehab program and joining a gym, I felt like I was starting to make some progress. And then the other shoe dropped.
Three years ago on my son’s birthday, I was told I wasn’t a candidate for lung transplant. At the request of my pulmonologist, I sought a second opinion. The same determination was made. So much for feeling motivated.
Sometimes you have to take a step back and listen to what’s being said. The doctors told me I wasn’t a candidate for transplant, but I interpreted this to mean that nothing else could be done for me. Their decision terrified me, and then the pandemic hit. Now I had to live with even more fear.
After several months of lockdown, I was finally able to see my pulmonologist again. I told him that I hadn’t been exercising as regularly due to COVID-19 and had lost whatever progress I’d made. I couldn’t go to the gym, so my only recourse was to rehab at home. He scheduled me for a six-minute walk test.
I required 11 liters of oxygen to finish the test. I was crushed. That was the moment I realized that if I wanted to stay alive, I had to fight for myself.
“Do one thing every day that scares you.” ― columnist Mary Schmich
The doctors who offered me a second opinion about a transplant felt that I was too frail for post-surgery rehab. That angered me more than anything I’ve ever experienced. Requiring 11 liters of oxygen to walk was unacceptable. I had to motivate myself because no one else was doing it. I was it.
Every day I pushed myself to go to the gym and walk on the treadmill. I was finally able to walk a half-mile using 4 liters of oxygen. I could live with that, but I knew I could do better. I even started lifting some weights. My theory was that I had to keep my frame strong to carry my body.
Three days before New Year’s, I did another walking test. This time I only required 2 liters of oxygen. I thought the pulse oximeter was off, but the therapists reassured me that it was working correctly. I became even more motivated. I felt like I was getting part of my old self back. I was accomplishing the biggest task I’d ever been faced with: saving my own life.
Now, with 2023 in full swing, I have a year of adventures ahead of me. Staying motivated is tough, but the rewards are great. Every day is a new adventure; just hang on and enjoy the ride.
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.
About the Author
Comments
Rick Thompson
Thanks for the inspiration Charlton. I've been fighting Pulmonary Sarcoidosis for 27 years, and the last two have proven brutally challenging as I've digressed from a former nationally known rock climber (800+ first ascents and have written 9 books on the subject) and skier, to being out of breath at the top of the stairs. I'm a patient at National Jewish Hospital and am struggling for new, innovative treatments to ease my breathing challenges. Your story of staying inspired is at the heart of any effective treatment plan, I've taken note and will be changing my strategy going forward. Thanks again for your words of encouragement!
Rick Thompson
Louisville, Colorado
Charlton Harris
Thanks for reading and for your support, Rick. This adventure is TRULY an adventure. I'm glad to have met someone as active as me who knows the benefits of "keeping moving". I empathize with the changes that sarcoidosis has challenged you with, but understand that we will get through this, one step at a time. Keep moving, my friend and always try to remain positive. This is an adjustment to life, not life-defining.
Peace to you and thanks for reading!
-C-
Susan Taylor MacLeod
Thank you , Charlton, for the information you discuss in your articles and your progress. Best to you in the New Year and will keep you in my prayers.
Charlton Harris
Thank you for reading and reaching out, Susan. I'm still trying to make progress as I hope others are too. I've started a new program last week and so far it's very challenging. It's the thing I needed to help me get better.
Best wishes blessings to you in this New Year and I'll keep you in my prayers. Keep moving-staying still is boring!
Peace
-C-
Donna Marie Brown
I was diagnosed with pulmonary sarcoidosis in 2006/2007. I was initially started on prednisone. Then my doctor put me on Remicade for a year. I have been in remission ever since. Have you been offered this drug?
Charlton Harris
Hi Donna.
I was on prednisone for the first 9 months when I was diagnosed. Not so much since then. Over the years I've had the medrosepack where you step down from 5 tablets until you finish the pack. I've never had Remicade. I take dandilion root, black seed and mushroom capsules that I think has helped me tremendously. Do some research and speak with your physician.
Thanks for reading and contributing to the dialogue.
-C-
Deborah
THANK YOU for your thoughts! I received a pulmonary sarcoidosis diagnosis in 2021. I went through high prednisone treatment for 5 months, with bad side effects and no lung/ breathing improvement. Then put on methotrexate, which has not had an effect - but I continued taking it. I HAVE made breathing progress by losing weight and dramatically shifting my diet ("anti-inflammatory eating"). I have also started exercising again. I consciously direct my attention away from feeling sorry for myself and whining - life is too short for that! I decided to pursue natural ways of handling this condition. Charlton,I have done some research into naturopathic ways of managing symptoms. Would you please let me know what this herb/supplement is you're taking? I am COMMITTED to figuring out a natural way of handling this! I am experimenting with some other supplements myself. If you can't respond here would you email me separately? YOU'RE A BLESSING!!! THANK YOU Deborah Galuk
d.a. scott
In the beginning I thought "I don't need permission to save my life." This was a good reminder because I've faced down discouragement a few times since diagnosis and some really recently. I'm glad that fearlessness isn't a requirement for facing fear and discouragement. Thank you for your stories and happy new year!
Charlton Harris
Thank you for reading, D.A.
Remember, you never need permission to save your life or to live it. I've had to face down some obstacles and I still do, but no matter what I'm faced with, I'll always try to do things on my own terms; especially living the best I can.
Thanks for reading and please continue to contribute to the conversation.
-C-
Francis Thompson
I like to remember that the difference between someone who is brave and someone who is not is only what they do. We are all scared, we just find the courage to face it and move on. Good luck on your journey. The first few years after I was diagnosed, I commented on the challenges I faced. I finaly realized I was scaring my kids and family. I had to change and from then on, I demanded more from myself and stopped dwelling on what I can't do and be thankful for what I could still do. I hope all goes well for you.
Sharon Phillips
Thanks for your article, Charlton. I was newly diagnosed with pulmonary sarcoidosis on Dec. 30, 2022, however, I've had symptoms for many years. I'm currently not on any medication, by choice, and taking vitamins, juicing, exercising, and a lot of prayers. I do have a dry cough and severe arthritis in my lower back with shortness of breath, but keep pushing every day as well to continue to live a thriving life. I live in NJ but was referred and went to the Cleveland Clinic for a full evaluation by 7 specialists. I'm hoping and praying a cure is found soon that won't compromise or damage my other organs. I'm afraid to take the treatment that is available now, but if I have to I will. So far my doctor has not prescribed anything except an inhaler, which I do not use, because it gives me the shakes. I'm wishing you all the best with this challenging disease and claim that it will not steal my joy!
Charlton Harris
Thanks for sharing your story, Sharon. Like you, I don't take any meds for the sarcoidosis; however, I do take 3 meds for pulmonary hypertension. You may want to check with your pulmonologist or a cardiologist about PH. As I understand, some lung issues can cause PH. I take vitamins daily and I do believe that they help tremendously. I also hit the gym about 3-4 times a week and I just started water rehab which has been a huge help with my walking and breathing room air. I would suggest consulting with your pulmonologist about both pulmonary and water rehab. You'll be pleased with your results. Keep fighting and keep living and by all means, KEEP MOVING!!
Peace & Blessings
-C-