A Foot Fracture, Sarcoidosis Signs, and COVID-19, All at As soon as | Sarcoidosis: A Snowflake Illness With an Avalanche of Penalties

When it rains, it pours … however when it snows, it’s sarcoidosis.

Sarcoidosis is also known as a snowflake illness as a result of no two circumstances are precisely alike. Signs can start at any age and have an effect on any space of the physique. It’s typically a continual situation, however some sarcoidosis warriors are in a position to obtain remission.

It impacts every of us at various ranges of severity, from everyday and even hour to hour. Some persons are asymptomatic and unaware that they’ve sarcoidosis, whereas others, like me, grow to be disabled. Sadly, problems from sarcoidosis will be deadly, as was the case with my fellow affected person, advocate, good friend, and inspiration, Rodney Reese, who handed away in September 2021.

Sadly, sarcoidosis can have a snowball impact, looming ever bigger in each the physique and the thoughts.

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The dance of remedy, uncomfortable side effects, and comorbidity

It begins with a symptom or two, and throughout the seek for solutions — which may final years — frustration and concern pile on. With the grief and aid of analysis, we might start remedy, however that usually brings distressing uncomfortable side effects.

Due to this inflammatory illness and its remedies, many people grow to be immunocompromised, leaving us at better threat for infections, viruses, and extra. Sarcoidosis is usually joined by comorbid situations, which lead us again by the cycle with new signs, remedies, and uncomfortable side effects.

As we construct our stockpile of remedies, it will possibly really feel like we’re in a snowball combat with our our bodies, volleying backwards and forwards between taking hits and throwing all the things we will at our signs and their underlying trigger.

Sarcoidosis took its first shot at me over a decade in the past, and I’ve since hit again with steroids, anti-malarial medication like hydroxychloroquine, and low-dose chemotherapy medication like methotrexate. I used to be lately struck with a shock snowball once I fell and broke my foot whereas on trip.

As if the fracture weren’t sufficient, I needed to miss my weekly intravenous immunoglobulin (IVIG) infusions, as a result of my neurologist was involved concerning the elevated threat of thromboembolic occasions (blood clots). Going a month with out my infusions, I felt a noticeable enhance in neuropathy signs.

One other setback

I used to be in a position to get again within the combat when my main physician prescribed a blood thinner to counter the chance of blood clots. However after one infusion, I realized that my mother had examined optimistic for COVID-19, simply two days after we had been collectively for Hanukkah. I needed to isolate for 10 days, which meant lacking my infusions once more, which led to extra neuropathic ache — along with my nonetheless damaged foot.

Earlier than I may even stand up, the hits simply stored on coming: My husband examined optimistic for COVID-19, too, and though we tried to maintain our distance after that, it was too late. After avoiding most individuals and locations for practically three years, I used to be sick with COVID-19. Now I had a damaged foot, elevated nerve ache, and COVID-19, unexpectedly.

It was very unusual to have COVID-19 together with sarcoidosis. Lots of the signs overlap, so at instances I wasn’t certain if it was COVID-19 or only a dangerous sarcoidosis flare. On an excellent day, I can simply grow to be in need of breath, and I’ve had a stuffy nostril resulting from continual sinusitis and rhinitis for over 15 years. I’ve had a scary-sounding cough since I used to be a baby, and I dwell with fatigue, sweats, chills, and quite a lot of aches and pains all through my physique, on a regular basis. However once I felt the cough reverberate by my chest, I simply knew.

I used to be considerably ready for this battle, although. I used to be absolutely vaccinated and boosted, and had just a few at-home exams in my closet. Along with the antiviral remedy Paxlovid that my physician ordered instantly, I used to be in a position to soften these latest snowballs thrown at me.

I’m so grateful for these scientific advances, as I do know that the virus would have been a lot worse with out them. After a couple of week and a half, my COVID-19 signs lastly eased, and I’m excited to say that I’m lastly again on the infusion middle as I sort this.

However simply as mounds of snow can stay lengthy after it has stopped falling, COVID-19 signs can linger after a detrimental take a look at.

As I proceed working my means by messy piles of snow, I’m nonetheless scuffling with a damaged foot. And I nonetheless have sarcoidosis fatigue. And autonomic nervous system dysfunction. And extreme arthritis. And … the checklist goes on. With all these ands, it’s arduous for me to say that I really feel “higher,” however I’m grateful to say that it’s not as dangerous because it was.

Similar to snowflakes, every sarcoidosis warrior is exclusive and exquisite in their very own means. And although we could also be fragile on our personal, after we be part of collectively for assist, schooling, and advocacy, we is usually a highly effective power.

“Even the strongest blizzards begin with a single snowflake.” — Sara Raasch

Observe: Sarcoidosis Information is strictly a information and knowledge web site concerning the illness. It doesn’t present medical recommendation, analysis, or remedy. This content material isn’t supposed to be an alternative choice to skilled medical recommendation, analysis, or remedy. All the time search the recommendation of your doctor or different certified well being supplier with any questions you’ll have concerning a medical situation. By no means disregard skilled medical recommendation or delay in searching for it due to one thing you will have learn on this web site. The opinions expressed on this column will not be these of Sarcoidosis Information or its father or mother firm, BioNews, and are supposed to spark dialogue about points pertaining to sarcoidosis.

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