Celebrating life while being mindful of the health needs of sarcoidosis

[Joachim]

April 15, 1994: On that day, my life was changed with the passing of my mother.

Joyce Ann Monroe Harris was just 50 years old when she died, a bit younger than I am today. That was 29 years ago! It seems like a lifetime. I can’t even begin to list all the things my mother has missed, though I was raised to believe that she’s still with me in other ways.

It’s a sad coincidence that the person who had the biggest influence on my choice of an accounting career died on April 15, the typical deadline for personal tax returns in the United States. (Side note: I do not do personal taxes, and being a CPA goes well beyond taxation. But I digress.)

I’m writing this from an airplane flying to Richmond, Virginia, from New York City. Most years, I make a pilgrimage to Richmond on or near April 15 to visit my mother’s grave. Not a day goes by when I don’t think about her — a son never forgets his mother — but I do find a special peace in my annual trip to where she died and where I was born.

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My mother died from severe complications of dementia. Her older sister died at about the same age in similar circumstances. And that sister’s daughter also died from similar complications. Some questions remain about my mother’s passing, and I’ve had to make peace with some of those concerns.

But I also admit that those never-ending questions prompt me to pay attention to my own health, especially my sarcoidosis. Fortunately, I have none of the early signs of decline that my mom showed many years before she took a severe downward turn. But with chronic sarcoidosis, I still have to be mindful of even small changes in my health.

A few years ago, I had bad dizziness. Was it the start of neurosarcoidosis or just plain old vertigo, which many people get as they age? As it turned out, it was the latter, which was confirmed only after a lot of testing.

When I have a chronic cough, I wonder if it’s because my pulmonary sarcoidosis is getting worse, or perhaps I need to tweak my meds. Maybe it’s just a cold or allergies. Most recently, it was just a cold.

When I found a strange bump on my body, did I need to go back to the dermatologist to get my skin checked for new signs of sarcoidosis on my skin — especially because that’s how I was diagnosed? Or was it just a bump? Again, it was the latter.

When I’m really out of breath during a long run, it’s a “fun” and frequent challenge. But is it pulmonary sarcoidosis (especially since many with sarcoidosis can’t run too far, if at all), a bad cold, allergies, or a combination of these? Usually, it’s none of the above. I likely just ran a little too hard and was having an off day.

The list goes on. And that’s without even considering the past few years of COVID-19, which adds another high-risk layer of concern for my health. But that’s the reality of living with chronic disease.

My mother was sick well before she showed the outward signs of what ultimately took her life. I hope to have many, many decades of happiness ahead, even while I’m sick but don’t look like I am.

Most importantly, though, my annual visit to my mother is a reminder of how precious life is. By going to Richmond, I celebrate her life, not mourn it. I reflect on how far I’ve come, not how difficult life can be sometimes. After all, I know that my mother would want her son to keep going, no matter how difficult things get.

And that’s worth celebrating.

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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.

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