This Post Offers Some Background

~Highlighted words take you to photos on my Instagram, if you need a visual~

It will always surprise me how easily I can fall into my more introverted tendencies. I am a creature of habit, always have been, and once my routine gets knocked out I immediately resume my role of the winter bear in hibernation. When I was in high school I would blame it on my Seasonal affective disorder (SAD), but it makes more sense to call it Winter Bear Syndrome.
Right now, in particular, I am an ill winter bear.

This past fall when I first dropped out of school and left work, my daily routine was scrolling through political memes on Facebook and bingeing show after show on Netflix. At first it worked well enough. I could half-daze my way through chest pains and headaches, only ever leaving the house to go to doctor’s appointments. In my head, I had assumed that I would be back at school and work in January, bundled up in a warm scarf with my Starbucks chai in hand (venti; almond milk; no water; 8 pumps). I was meant to be flying to Denver in February for a collegiate theater festival, spending a week among my thespian peers. But that soon was off the table, thanks to the lung mass full of fluid in my chest (Airplanes don’t really mix well with bad lungs. Who knew?). So, when January did roll around, I had nothing going for me.

Apparently, I am diagnosed with “Granulomatosis with polyangiitis” or GPA. DON’T look up images, lord knows I haven’t and I don’t want to subject you to anything grody. Actually, do look it up and let me know how bad it looks. The American College of Rheumatology defines GPA as “a rare blood vessel disease.” It generally attacks the sinuses, lungs, and kidneys. It does something to small arteries. I most definitely have it in my nose and my lungs, possibly in my kidneys. Everything says that I will have flare ups that could appear in a couple of months, or 20 years. Which means that for the rest of my life every sniffle, every cough, every ache, will likely lead to a doctor’s visit and a panic attack. I haven’t processed what that means for me yet. It hits me in waves.

I’ve been home for almost three months now. Sometime in October I developed a minor sinus infection, and by November I was dropping out of class and calling out of work. At some point I was told I had severe sinusitis and pneumonia. Then there was a mass found in my lung. And then the sinusitis turned into a nose mass. Thanksgiving was spent in ER after scary chest pain, a side effect from the lung mass. Christmas was spent bundled up in sweaters and blankets, opening presents half asleep. The end of December brought a bronchoscopy, a lung biopsy, and a sinus surgery. When GPA occurs in the nose, it causes deterioration in the walls, sometimes even rupturing holes in the septum. I have one. Way far back in my nose is an extra tiny hole. Joy.

In the meantime, I’ve been trying to occupy myself. Netflix has been a big help. Playing video games from my childhood (Hello, Zoo Tycoon!). I’m trying to paint. I finally got around to editing photos from my trip to Australia, which led to watching YouTube videos on how to be a better Photoshop artist. I’ve been trying to read again. If you are having difficulties keeping yourself focused on stuff, I recommend the Forest app for your phone. I try to use it to force myself to read for at least an hour every day. As a reward for not using my phone during that time, I get a cute little tree and a forest whose density depends on how well I focused. In regards to pain, this has been the least amount I’ve had in months, and I hardly even consider it pain. It’s mostly discomfort. Every day I try to remind myself that it is an awesome privilege that I get to stay home and just work on anything I want, with no responsibilities. I’m trying to not waste that. But some days are harder than others.

I’ll write about that next time I think.

~Raelee

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