Throughout My Life With Sarcoidosis, I’m Grateful
On Rare Disease Day, and since, I’m grateful.
On this day of consequence and nonsense, of war and peace, of movement and stagnation, of highest courts and lowest valleys, of pandemic and hope, I’m grateful.
I’m even grateful for sarcoidosis, or at least my version of it with pulmonary, skin, and lymphatic involvement. And I’m grateful for the ability to fight sarcoidosis.
(Now, to be clear, I am not glad I have sarcoidosis, nor did I wish for it. But since I do have it and it shows no signs of going away, I’m grateful for the chance to keep fighting it.)
I’m grateful for the chance to live my best life, even under challenging circumstances. Because even under those circumstances, I have access to health resources that greatly assist me in this fight.
And I’m grateful for home.
My current home is in Brooklyn, New York, but my old home is in Maryland. That home is not just where family and friends are. It’s also where my doctor is, at Johns Hopkins.
Despite moving to a city with numerous world-class medical options, when you have sarcoidosis you don’t leave a great doctor unless you have to. And since I only see my sarcoidosis doctor a few times a year and I can align her appointments with family visits, I didn’t have to. So, I’m grateful.
Just three days after Rare Disease Day, I have a Hopkins appointment scheduled, including scans and a pulmonary function test for my lungs. I’m grateful.
And when bad things happen, like when I contracted COVID-19 in early January, I have access to excellent medical care in New York City, albeit with more than a little privilege on my side. I am quite aware that I have benefits and resources that others with sarcoidosis don’t. So I’m grateful, even while I’m troubled by and continue to fight the inequity of it all.
Sometimes, when you get to go home, you also get to remember just how far you have come. And how blessed you are. And that also makes me grateful.
So while my words may be more inward-focused than not, I hope all can feel my true message.
That message reminds us as well that no matter how tough the journey, no matter how difficult the circumstances, and no matter how tough it is sometimes, hopefully, despite all odds, we can find a way to still be grateful.
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.
Great story. No matter what, we got to keep going.