Spoonie Saturday — Life, Love, Retirement and Sarcoidosis in the time of Covid

image from pixabay

Meet My Dragon

Greetings Spoonies and other sentient beings. J. R. R. Tolkien long ago wrote “It does not do to leave a live dragon out of your calculations if you live near him.” Thus it ever is with autoimmune disease. Bilbo Baggins faced the dreadful dragon Smaug, most Spoonies face a live dragon on a daily basis. My dragon is called “Sarcoidosis.” It’s an odd little disease that often fades into remission without signifcant treatment within 1-2 years. Multisystem Sarcoidosis is relatively rare, about 20% of patients manifest the disease in multiple organs, I am such a one. I’m not going to get into the details of the disease, if you want to read more than you ever really wanted to know about it, you can read this article from NIH. Personally, it gives me a headache.

But that’s not what this post is about. This is about how to figure a live dragon into your calculations which is an on-going project here at chez spoons. For years, I personally depopulated the Barnes & Noble self help section trying to figure out how to do “more” with my rapidly dwindling energy reserves. The problem is I keep leaving a live dragon out of my calculations.

Life changes you, age changes you and, trust me on this one, chronic disease changes you. A few years ago I could be up, exercised, meditated, fed, dressed and out the door in about an hour. Nowdays, the morning application of basic medical treatment for the multiple manifestations My Dragon is currently visiting upon me take at least 2 hours. Most of the books I have, and do, read are written for people younger than me balancing children and careers, or bored older folks looking for a change in their routine. I don’t really need to change my routine, My Dragon does that for me on a regular basis. I don’t need to find a foolproof time management system that gets all those pesky items off my To Do list. Nope, what I need to do is just what I can do. No more, no less.

There’s a great deal of serenity in acceptance of things we cannot change. I’m learning (slowly I grant you) to let go of expectations. I expected to get out for a walk today, the temperatures are a balmy 28f, but I must take into my calculations the fact that My Dragon (aka autoimmune system) is a fire drake. Today, the bottoms of my feet are covered with tiny eczema blisters (why yes it is extremely painful, even with neuropathy). Today, I will recalculate my plans and use exercise bands for a seated workout. Today, I will remember that, sooner or later, My Dragon will once again sleep and I’ll have some respite. All good things come to she who waits, always keeping one eye on the live dragon.

Til next time ~stay wild moon child ~JP

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