Two months have gone by since I hit publish on my coming out story. I had a plan to write and publish many, many posts about my four-year journey. But, you know, life is life and I just didn’t feel like doing anything.
But today, July 25th, I have a little something itching to be shared.
I was scrolling through Instagram and I came across one of the lupus-related accounts that I follow (lupusoracle) and she shared a quote about inner peace. The account is full of inspirational sayings. And they are all, essentially, about seeing the light at the end of the tunnel.
Now, I am sitting here at the Reference Desk in Chesnutt Library, printers whirring behind me in my right ear, a class of students laughing and chatting loudly behind me in my left ear, my eyes tensing and straining to focus. My contacts are fighting with me. The front doors creak and moan when with each entrance and exit. The sun stretches and struggles to reach me through the glass windows, but is muted by the white florescent lights. And in this uneventful moment, I am immensely grateful.
You could argue that I am currently in the midst a state of remission…quiescence…dormancy. My last two blood workups have indicated that I have no disease activity, despite having recurring symptoms. Overall, I am medically, clinically, theoretically well.
The more common usage of the term “remission” would be to be “in remission on medications, or quiescent (quiet).”” This would mean that the person with lupus is taking Plaquenil® (hydroxychloroquine) and/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc. This is the goal for most people with lupus, but is not always possible. (source)
I still get tired and I mean excessively tired. I refer to this type of fatigue as me being a noodle. Because, as I lay in my bed, I am completely limp, listless, and languid. There’s no zest to be found. And it’s as if someone or something is pushing down on my entire being. Blinking becomes a chore. Rolling over, changing positions no longer option.
My noodle state doesn’t last long.
Just a few months ago, I was reeling over having lost significant patches of hair.
It wasn’t a surprise that I had hair missing; I have had recurring hair loss since 2011, as well as overall thinning…and part of this is genetic. But this time, it was different. The patches of missing and thinned hair were so very large and noticeable. They were affecting how I did and did not style my hair. I was worried they were going to get bigger and/or not grow back. I wondered if I was experiencing a new skin manifestation and if I’d have to end up involuntarily shaving my hair. But really, my vanity was at the forefront of my worries. I was amazingly most concerned about how I looked…or how thought I looked.
Those large chunks of missing and thinned hair have since been filling in…somewhat. I added a hair.skin.nails supplements to my daily medicinal cocktail.
It may very well be my imagination. But I’ll take it.
I haven’t missed much work this summer.
I have managed to lose a little weight and a few inches off my midsection, despite being on prednisone.
I started library school at North Carolina Central University.
I have been crocheting a Tetris-themed afghan and I made the cutest Queen Elsa-inspired hats.
I caught lots of Pokémon and I didn’t even know I wanted to catch them all.
I have so, so much to be grateful, happy, sunny for. It’s not easy for me. I am a natural pessimist, worrywort. Anxiety and depression have been with me since high school. The glass is always empty and the worst is always true. Though the world is literally on fire and there’s a real chance I might have to move abroad, I am acutely aware of all the things that are a-okay in my wholly self-absorbed world.
I have been lucky to not have any organ involvement and my pain levels are now very low.
There was a time when my fingers were so swollen and red and achy and tight, I could barely grip my Diet Mountain Dew. I get major headaches and occasionally experience the most gut-wrenching stomach pains and upset (pun intended). But these are not major and could (though not likely) totally be unrelated to lupus.
This isn’t the post I planned to share next. But it just hit me like, well, a ton of bricks. So here we are. And I guess I’ll have another post to share in another two months.