Things are Always Changing – Health Updates 2022

Fall ushers in beautiful changes as the leaves turn vibrant yellow and gold, then beautiful orange. Next, deep red (my favorite!) grabs a brush to finish painting the glorious horizon for all to enjoy. 

And then we have a windy weekend and it’s all gone in about an hour.

Sorry to bust up the vision of these beautiful mountains, but yeah, beautiful-beautiful-beautiful- then <poof!>  It’s almost unkind. I could look at these beautiful mountains forever, all day long.

Alas, things on the health front behaved similarly over the last year or so. Things were going some better then….. not. But hopefully will again. But haven’t yet. 

The year was hard. I’d been having symptoms that were outside the usual list and, as usual, the journey of finding out what’s causing them is so long. So elusive. I was treated shortly for myasthenia gravis but in the end, I do not have myasthenia gravis. I have new offshoots of Sjogrens, namely dysautonomia (which we’d already suspected long before Sjogrens showed its crazy self) and now gastroparesis, after being affected by gastric dysmotility for a year or two. Turns out, non-POTS dysautonomia is the neuro part of Sjogrens. All Sjogees do not necessarily experience these symptoms. The most familiar form of dysautonomia is POTS, which I don’t have. My docs at Vanderbilt, along with my amazing local rheumatologist, figured things out and I now begin the journey of re-establishing with the Dysautonomia Clinic at Vandy. 

The hardest part of the year’s journey was losing Momma. I’ve never lost a parent before and while I’m glad she’s no longer suffering, I sure miss her. She passed about a month after the diagnosis of myasthenia gravis. She used to get so worried about my autoimmune journey. I wish I could tell her that in the end, I don’t have (yet) another autoimmune disease. One day I’ll tell her all about it. I think she already knows.

I fell on my right hand this year (Sjogrens foot neuropathy, anyone ??)  and it’s giving me fits! No bone breaks, but the RA still hasn’t settled down. Three rounds of injections so far. It really bothers me when I try to play the piano. Praying it’s only temporary!

This is a Sjogrens sun rash. I’ve had just one previously, but have had it three times this year. The thought is that medicine changes allowed Sjogrens to get ahead of us. Hopefully it won’t pop up any more. It has to be treated with steroid creams and oral or injected steroids if it’s persistent. I’ve really had to stay in out of the heat this year. July and August were pretty boring, I’m just not cut out to sit home. We didn’t even go on any trails while it was hot. I’ve learned that heat triggers the dysautonomia, and that, indeed, has been my experience.

Part of the dysautonomia complex with Sjogrens is redness in the face. It can mimic a lupus butterfly rash, but lupus has been ruled out numerous times over the years. The redness is worse if I get hot or am outside in hot weather. I tell Chris it has nothing to do with my age… 

So, that’s the latest on the health front. I’m getting involved in patient advocacy again, had to let it go for a long while. This crazy health journey has a calendar of its own, so I’ve learned to do what I can do and the rest of the time – REST! Being unable to commit to much anymore used to really upset me, and if I linger on it long enough, it still brings me down. But, so long as we do all we can do, whenever we can, for whomever we can – then I’d say that’s called “success.” I remain passionate about helping people on the admin side of sick, and I’m getting new speaking opportunities, participating in some studies and even legislative efforts to help patients on this good, hard journey. (Stay tuned for these details 🙂 

Rock on, Rheumies, rock on.

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