Living With A Chronic Illness
My knuckles were swollen when I woke up yesterday.
I wish I could say this was because I punched Fredo Trump right in his stupid cleft chin for murdering animals and espousing the kind of opinions that only an asshole and an idiot would espouse, but no.
My knuckles were swollen because I was having a pretty bad RA flare up.
I couldn't straighten out my fingers and I couldn't make a fist without experiencing jarring pain.
I was diagnosed with Rheumatoid Arthritis a few years ago when I realized that my joint pain was so severe, I was having difficulty accomplishing simple tasks like holding a pen, opening a door and walking.
I made an appointment with a rheumatologist and took the RA Latex Turbid Test to determine just how bad my condition was.
The normal range is 0-13.
I clocked in at a solid 177 which basically makes me the Kobe Bryant of RA.
Unlike osteoarthritis which is a degenerative joint condition, rheumatoid arthritis is a long-term, incurable and progressive autoimmune disorder where your immune system is basically a giant bag of dicks that attacks everything.
I don't think of myself as someone living with a chronic illness just as I don't think of myself as being short.
RA is just some annoying shit I have to deal with just like living in a world where all of the everything is up too high. You accept it, you deal with it and move on.
I mean, everything hurts and I’m exhausted literally all the time, but isn’t everyone? Isn’t “Everything hurts and I’m dying",” essentially the Millennial battle cry alongside, “Hey guys! Let’s destroy the diamond industry and then, when we’re done - let’s fight for equality while eating avocado toast with fried capers and Aleppo pepper!”
Guys. We need a better battle cry.
But I’m starting to realize that my version of “Everything hurts and I’m dying” is a little more intense than most and the reason I’m tired all of the time is not because I stayed up until 2:00am, binge watching Russian Doll on Netflix but rather because my body is constantly battling an infection that doesn’t exist and that shit is exhausting.
Christine Miserandino came up with a pretty good explanation of what it’s like living with a chronic illness. It’s called The Spoon Theory and you can read a more in-depth version here but basically - if you have a chronic illness, you have a limited number of spoons each day and each task you perform - walking the dog, making dinner, work - uses up one or more spoons.
Once they’re gone, they’re gone until the next day so you’ve gotta be pretty conscientious about how you use them.
While it makes a complicated issue easier to grasp, I don’t measure my days out in spoons.
I take the Tom Petty approach - “Some days are diamonds/Some days are rocks/Some doors are open/Some doors are blocked.”
Simply put, I get done what I need to get done and attempt to take care of myself and those I love as best as I can.
On the days that are diamonds, I try to appreciate as much about my life as I can. And there’s a shitload to appreciate:
In addition to these guys, I also live in a place where the average temperature is 75 degrees and in close proximity of a joint that sells not only the best pizza and beer but also these ridiculous Belgian waffles with Godiva chocolate drizzled on them and nachos with beer cheese, legitimately spicy fresh jalapenos and honey. HONEY. It’s a game-changer.
Guys. Seriously. Head to West Palm Brewery. It’s so good.
The days that are rocks?
I try to breathe through - deep, calming breaths which sound like the ocean.
I speak up about what I need - a hug, a big mug of tea the color of a brick, to go to sleep early.
And I try to keep in mind a pretty vital acronym - WWJVND:
What Would Jonathan Van Ness Do?
He loves Game of Thrones, he’s got fabulous hair and he’s super kind so this is something I can definitely get behind in dealing with RA and in dealing with life in general.