Staying Honest and Motivated While Living With Sarcoidosis
Let’s be honest …
Ok, I’ll be honest. I’ve found that being honest with myself seems to do me a world of good. And I don’t mind being honest with others about my health, but I often find their interest in my honesty is superficial. I think many are just being cordial when they ask me how I’m doing.
I get it, people have their own lives to live and their own battles to fight. But if you’re like me, you’ve learned who’s genuine and who’s not.
The fall season is upon us, and I couldn’t be happier! It’s my favorite season, when the weather is cooler, the people seem to be nicer, and I can breathe crisp air without a mask. It’s also a time I love being outdoors just enjoying life and all I have left to give of myself — to all who would appreciate me!
I look at fall as somewhat of a rebirth for me, like starting over. New Year’s Eve celebrations are for amateurs or ordinary folks wanting to feel special. I’m a special guy, which is why I can celebrate change during a calendar year — even during a pandemic.
In 2017, I was overly excited when I came home from the hospital in late September. After spending two months there, I couldn’t wait for the fall and all it had to offer me. I prepared myself to make a clean attempt at doing better for myself.
As usual, life got in the way. When you’re living with a condition like sarcoidosis, you’re constantly balancing between your life and living. Thankfully, you can strike a balance between the two.
Slow and steady wins the race
At this time of year, I tend to take my time more, so that I can fully enjoy the season and the weather. Unfortunately, taking my time and being more patient with myself don’t seem to agree with some people.
As a sarcoidosis survivor, I tend to take deliberate steps in my daily living. But taking deliberate steps with my health and the way I choose to live causes some people to become frustrated or impatient with me. I notice this with some friends and family members who seem to think that I rely on my health as an excuse. It’s unfortunate for them that they don’t understand. I really hope they’re never in a position to have to deal with compromising health issues.
I loved to walk at this time of year. Losing my last two jobs afforded me the time I needed to regroup. I used to walk at least 2 miles a day, and I’d often walk when I had my dog. I called him my rehab doggie because he helped me recover a sense of normalcy each time I came home from the hospital.
I also was a member at the local Salvation Army Kroc Center, where I would swim at least twice a week. On days I didn’t walk or swim, I’d ride my bike somewhere within the 1,800 acres of Philadelphia’s Wissahickon Valley Park, or along MLK Drive, which the city shuts down on weekends for cyclists and joggers.
All that changed in 2017, when pulmonary sarcoidosis robbed me of that freedom.
Every day is still an adventure
Although things have changed for me physically and mentally, I’m still the same person. I still enjoy walking, although now I do it in a controlled environment using oxygen. I try to mirror the exercises I learned in pulmonary rehab to keep my body strong. All of my doctors and therapists, past and present, have clearly expressed that anyone dealing with pulmonary issues should try to keep their body moving. The way I look at it, I keep moving to stay motivated.
There are a few things I can’t do like I used to, and I’m cool with that. While I haven’t fully conceded that I can’t, I’ve resolved that I can at my own pace. Sometimes you have to slow your roll without giving up.
I miss not working in my field, as well as swimming, biking, walking, and my doggie, but the bigger picture is now I have time to concentrate on myself. If this adventure changes again, I’ll adapt in my own way again. Most importantly, I won’t quit. I gotta keep living.
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.
KUMAR BAIBHAV KUMAR
We must being honest with ourselves to improve and grow. As much we know ourselves that much we find ways to imporve.
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Thanks, I found this page last week, I’m Isabel and was diagnosed early this year I felt disappointed with my primary doctor cause I never miss a year check out, and after I see other specialists, they told me I been sick for maybe 20 years very silence disease, I’m looking for any information about the person I’m discovering I’m now......
I've lived with sarcoidosis for 3 years now. i am one of the lucky ones and have things under control with medication. I too, find it difficult for friends/family to understand my limitations because of this disease. Kudos to you and your determination to live the life you have.
Hi Jane, thanks for reading! Right now my health is pretty good, stable as my doctor said. I'm only on 1 med that I hope to get off of soon, but those limitations haven't stopped me from going to the gym and doing "my thing"! Although my relationships have changed, I haven't allowed the change to change me. Keep living and stay blessed!
I was diagnosed 5/2018. I had never been sick nor stay in a hospital. I was encouraged when I was told most ppl go in remission, then I was disappointed when I realized I wasn't going to be one of them. I knew I didn't have a support system strong enough to stick around. So I changed my phone number so they didn't have to lie about why they stopped calling. It's cool, because just like the guy in the article I'm reorganizing my world and I'm sure I'll find a purpose specific to the new me
Hi Mark, thanks for reading. I was diagnosed close to 20 years ago, and I've been in good health until 2017. If you remain healthy and stay physically active if you can, you should be fine too. For those friends and family members who have decided to distant themselves from me, I say THANK YOU! They did me a favor so I can fully concentrate on rehabbing my health and my life.
Continued Blessings to you my friend!
oh, that is sad. Live every moment!
I'm having pain crisis pains arthritis and everyday . I go to pain clinic.I work but now I am gone to get a lawyer to fight for my disability. I exercise and take care of myself. Sarcoidosis psychic knows has really changed the way my body functions. Living in pain.footpain, knees, arms pain neck pain it has the arthritis acting up more then ever. I'm not giving up. It is case rashes on body parts.I take my medicine I see my doctor I read the words of God. I am believing in healing. I was diagnosed in 2011. I enjoy reading your story.
It is truly difficult to tell since sarcoid frequently eludes diagnosis if it is not active but I was diagnosed in 2006 with pulmonary fibrosis and sarcoid of the skin. With various subsequent lesions elsewhere and my medical track record it would be reasonable that my lung issue was actually a sarcoid attack. I have managed well and am subject to the typical setbacks caused by collateral damages. Now on oxygen 24/7 I am a fountain of eternal hope with a treadmill recently installed in my bedroom aside a stationary bike. My life is full of family and responsibility so it is difficult to get that controlled life you refer to, Charlton; though I long to. I understand that people cannot grasp why it takes us so long to get ready, so quick to sit back down, so hesitant to take on projects. Sometimes I think I have to choose between the human interaction that surges me forward at their pace, or a more quiet, controlled life experience. That one gets hard.
Stacey J Toney
Diagnosed in 2006. Not sure what I expected to happen. I work more than 40 hours a week to keep strong. Just now seeing lesions growing all over my body. My memory has been getting worse. Getting ready to try one of those memory regimes. I dont anything at this time. Wondering should I be under a physicians care more often. I guess up to now, I pretended my disease didnt exist.