Fighting Back Against Sarcoidosis, One Step at a Time

Fighting Back Against Sarcoidosis, One Step at a Time

I’ve often felt like I’m just along for the ride when it comes to sarcoidosis. I’d wake up wondering what it would let me do. But a change I made in late February has given me a new outlook.

It happened by accident. Maybe you read my glorious account of tackling “heart attack snow” that month? Well, there’s a part two to the story that ain’t so pretty. 

Mother Nature broke me. It only took a few more snowfalls, after triumphantly digging out that day, for it to happen. If you wonder what broken looks like, it’s a pajama-clad woman sitting inside for six days straight hoping the snow melts. 

When I finally emerged to shovel those still-existent mounds, I decided to undertake a new challenge: a daily walk outdoors. 

I tend to go a bit overboard in my endeavors. You may remember me preparing weeks ahead for daylight saving time, which paid off, by the way. So, I decided to go big again. 

Regular cardio activity is key to managing my postural orthostatic tachycardia syndrome. Drenched in sweat and lightheaded as I shoveled, I was already paying the price for my impromptu hibernation. 

So, the next day, I pulled on my snow boots and headed out. I never anticipated that two months later, I’d still be sticking to the routine, and that doing so would impact me in so many ways. 

Carving a new path

From the start, I took a no-pressure approach. It wasn’t important to me how many steps I achieved. What mattered was that I journeyed out once a day, and didn’t let the weather or my health deter me. 

I initially put in a better effort on the warmer days, but after about a week, it didn’t matter. If it was snowing, raining, or cold, I dressed for it and carried on for the same length of time because the exercise felt good. Before long, I was easily hitting the recommended 150 minutes of moderate aerobic activity each week. 

Along the way, my self-doubt disappeared. I stopped wondering if I would be able to exercise, and instead focused on when I would exercise each day. That fitness mentality spilled over and resulted in other positive changes. 

Healthy habits roll in

My already vegetarian diet became even healthier. I focused on foods that would not only fuel my excursions, but also fight inflammation to reduce aches. 

With each passing week, junk food had less appeal, as did the couch potato lifestyle. Sitting around bingeing television and spending too much time off my feet was undoing my work, in my eyes. So, I became more active at home, too. 

I’d love to tell you that I’m symptom-free now, but I’m not. I still have no control over what sarcoidosis throws at me. The difference now is that I feel more empowered. Each time I slip on sneakers and hit the streets, it is my way of telling this disease that it will not hold me back.  

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear. 

  • Incentive to move: West Virginia’s new state motto could be, “We’ll pay you to move here.” According to CBS News, remote and self-employed workers can snag $12,000 for relocating there, under a new initiative. The state is also throwing in a year of free outdoor activities. 

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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.

6 comments

  1. Debra says:

    I think you are right, Athena. We may not have control over what Sarcoidosis throws at us but, the lifestyle we choose for ourselves can leave us feeling empowered. And that’s just it; it’s a choice we need to make. Be it a healthy diet, exercise or engaging activity, anything, to get us on our feet and moving! I think for me that if I find something I am able to do, it does make me feel like I’m still somewhat in control and NOT the Sarcoidosis. So no matter what it is, I guess that’s why I feel better when I am up doing things.

    • Athena Merritt says:

      You nailed it, Debra! I totally agree with you! It’s so important to keep challenging ourselves, and not let sarcoidosis steal our days.

  2. John Kilcoyne says:

    I have taken that approach for years. I have cardiac sarcoidosis and I know I can’t control when my heart will raise it’s head and put me down. After Feb/March of 2020, when I spent the month in the hospital with the flu and mi ICD firing at will, I have not recovered Fully from the experience. I’m still on oxygen, still fatigued and tired, and with getting COVID in March of this year I took several steps back. I do try to get out to walk but it’s not as easy and I’ve felt some of the motivation beaten out of me, still hope it’s just the illness. I will use your example as a motivator though. We’ll see how it goes.

    • Athena Merritt says:

      John, you’ve been through a lot these past several months. Don’t beat yourself up or use your past as a measuring stick. Just do what you can. It’s hard, even without health setbacks, to start at square when it comes to exercise. I have no doubt you will succeed, and accomplish more than you thought possible with your fighting spirit! Stay safe, and take care of yourself!

  3. Brenda says:

    How do you manage the pain that “morphs” from one place to another? Right now my right hip hurts so bad I can barely get up. I do walk but it hurts so bad my blood pressure rises, my HR rises and I can barely think. And tomorrow? If history repeats, it as in my hip may or will feel fine and then my left arm, leg or whatever will be hurting. Its crazy.

    • Athena Merritt says:

      The rotating agony of aches is terrible!! I use heat to loosen up achy joints before exercise, and ice after to settle things down. I also wear compression shirts and leggings when pain is bad. Seeing a podiatrist, getting orthotics, and a professional fit for sneakers helped a lot with my knees, hips and feet. If walking is causing pain, I’ll move to the elliptical or even an arm bike for cardio. Swimming has also been recommended to me for my joint pain, but I haven’t had a chance to try it out yet. What helps the most is not putting pressure on yourself, I’ve found. There are days I can only manage a few minutes at a time, and that’s OK. My goal is to just make exercise a regular part of my life, however that may be. I hope this helps, Brenda. Best of luck!

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