Happy Dysautonomia Awareness Month, friends. Holy shit am I glad the summer’s behind us!
Well, I say that, but it was in the eighties last week (Fahrenheit). Just my daily reminder that our planet’s temperature is set to a slow boil.
So, summer. I did absolutely nothing I had originally planned to do. Chronic illness has a habit of pulling out a Jenga piece at the very bottom just to watch the whole tower collapse into a loud, messy puddle of blocks. “Oh, you wanted to hang out with your friends for the first time in over a year? It’d be a shame if you felt overwhelmingly dizzy-nauseous for three months straight, huh? Happy 23rd birthday!”
GIF found with Google images. [GIF Description: Schmidt from NEW GIRL saying, “The economy stinks, bees are dying, and movies are pretty much all sequels now.”]
I was on a new medication that my doctor was hoping would delay my need for monthly IV fluids. Well, shocker, my body rebelled (again). I actually had to increase my IV fluid appointments to every two weeks, instead of every four. I should’ve made the change a long time ago, if we’re being honest. I had an appointment with the prescribing doctor set for a week or two from now, where I planned to suggest we get me off of that medication we were trying, but I had to move it because dermatology trumps everything right now.
If you follow me on Twitter or Instagram, you already know a little about my psoriasis flare. It’s gotten to the point where most of the top of my scalp is bald, save for a few stubborn strands of hair and large patches of psoriasis.
How did it get this bad, you ask? It’s only a theory at the moment, but I suspect Remicade plays a big role in the severity of it. Something about my body’s lowered resistance… I don’t know, a bunch of science-y words I’m too tired to recall. Before I started Remicade, I had a minuscule patch on the back of my head that was pretty much gone after a couple of washes with prescription shampoo. Cut to present day, about 11 months later, the psoriasis has spread to various areas all over my body and it is only getting worse.
You might be asking yourself, “Dannie, how do you know it’s psoriasis? Could it be a different side effect from Remicade, or something else altogether?” And my answer would be, “Because I had a surprise scalp biopsy.” Then I’d throw confetti because, yes, y’all! This is my life!
GIF from Google images. [GIF Description: Bo Burnham throwing multicolored confetti toward his live audience.]
My mom turned pale at the sight of a needle in my head, but I felt nothing except for a sting with the lidocaine. Honestly, the biopsy was over before I had time to process what was happening. Probably for the best.
I had a follow-up appointment with the same dermatologist recently, where he referred me to another doctor for answers as to whether or not my hair will grow back on its own. Because apparently there’s a chance it won’t. Which would suck, considering there’s no escaping it without putting a hat, headscarf, or wig on. Sometimes I prefer to walk through life without a chronically ill spotlight, you know?
I’ve been making jokes about my situation ever since we got out of that appointment because that’s who I am as a person, but I’m kind of losing my shit on the inside. I am twenty-three years old. I had an amazing head of hair! It was thick, dried straight, easily curled, and I pretty much rocked every hairstyle I’ve ever dared to try. And now the top of it is just…gone. You can see for yourself on my Instagram, if you dare.
It makes me laugh that you can’t even tell I lost any hair when I have a headscarf or hat on. Perfect, even my hair loss is invisible to strangers on the street… Which, I mean, I’m not complaining, but it’s discouraging to feel like I need to whip off my head covering to prove I’m not exaggerating or being overly dramatic. I’ve been put in that position a couple of times already and, though I’m not ashamed of showing my rather large bald patches, it’s the principle of the thing.
Alrighty. Well, I think that about covers it. I need to go hop in the shower, thanks to my new psoriasis containment routine, consisting of an alternating schedule of showering and applying a steroid gel every other night. I don’t know how I’m still standing. (Hint: I haven’t done much standing. Or moving in general.)