Choosing the Best Path to Managing a Disease  

With 8 a.m. closing in on a weekday, diners had already filled tables set up in a parking lot on a recent crisp morning. Just a five-minute walk away, chairs remained upside down at an eatery that hasn’t served meals since mid-March.

The pandemic has forced both restaurants to a crossroad I’ve stood at many times before with sarcoidosis. Each had to decide whether to embrace change or wait and hope for normal to return. 

Dropping my car into second gear and leaving the bustling lot behind, I hoped my local favorites would succeed on their chosen paths. In managing my health, I’ve discovered there’s good and bad with each approach. Neither guarantees a positive outcome. 

The first time I stood at the intersection of “do something or nothing” on my rare disease journey was when I was diagnosed. I had to decide whether to treat my pulmonary sarcoidosis immediately or see if it would resolve on its own, as it has for others. Like the shuttered restaurant, I chose to wait for normalcy, which months later still hadn’t occurred. So, I had to swallow change, in the form of prednisone and its many side effects.

Inaction didn’t pay off for me that time, but it has in other instances, like when I refused to go on medications for depression. I held out for years until my various symptoms were finally correctly diagnosed as small fiber neuropathy. 

Being diagnosed with a disease, and life after that, can be extremely unsettling. If there isn’t an immediate threat to your health, remaining idle for a while can be beneficial. It gives you an opportunity to reflect on your options, decide a course, and emotionally adapt.

Holding off on treatment can also give you a chance to get a second opinion and ensure that what’s prescribed is necessary. It’s the route I always take before going on another course of prednisone, because even short-term use of oral corticosteroids has its risks. 

Change is good, too, which is why I shake things up every so often in my health regimen by trying new things. In 2014, under the guidance of physicians, I transitioned off as many prescribed medications as possible. Moving to supplements, making lifestyle changes, and opting for over-the-counter medications whenever I can has helped me save money and experience fewer side effects. I recently made the leap to a vegetarian diet, which brought weight gain and pain relief. 

The downside of change is that it’s uncomfortable. Progress can take a while, and despite efforts, you may not obtain the results you want — or any at all. Addressing symptoms, like those from postural orthostatic tachycardia syndrome, without prescriptions is a lot of work.

Although going meatless brought benefits, since making the move I’m experiencing more fatigue and brain fog. I’m still trying to resolve those issues and determine whether they are a result of my diet change. 

How you manage your disease is up to you. Much like my favorite eateries, you should choose the path you believe will best lead to success. 

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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.

• Jurassic Quest: With “Jurassic World: Dominion” not slated for theatrical release until June 11, 2021, there is still a way to see dinosaurs up close. Jurassic Quest has two touring shows with stops in the U.S. and Canada, featuring more than 80 true-to-life-size dinosaurs. The dinosaurs roar, move, and some walk around, and attendees can interact with some as part of the exhibit. Tour dates and locations are listed at Jurassic Quest’s website. 
• Centenarian milestone: Hester Ford, the oldest living woman in America, celebrated her 116th birthday on Aug. 15. Ford has 12 children, 48 grandchildren, 108 great-grandchildren, and at least 120 great-great-grandchildren, the Charlotte Post reported.

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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.