“Growth is painful. Change is painful. But nothing is as painful as staying stuck somewhere you don’t belong.”
–Unknown
Yesterday was a whirlwind of emotions for me. And before I get into this blog post, I just want to remind people the name of this page: River’s Diary. I will happily whine and throw a tantrum on this side of the internet if I so want to. I am undergoing a period of metamorphosis, a period of changing and betterment. Please be nice to me. I will cry.
Yesterday, I went to the neurosurgeon to discuss the results of the Discogram procedure that was done on my back last Wednesday.
Positive for spinal fusion surgery repair. Please, Hekate, my love… I am only thirty-one, rapidly approaching thirty-two in October. The surgeon and his physician’s assistant are one of the best in the nation — some of the only people to do some brain surgeries or something like that. That’s all fine and dandy. They’re going to cut open my back and put metal screws in my spine. That’s scary. If I’m being quite candid: I’m so scared of the recovery. I’ve had a bone removed surgically (pisiform bone in my wrist) during a carpal tunnel release and man, the recovery was a ride, let me tell you.
The point is: I’ve got a lot riding on the little bit of ability that I have to do things for myself.
I have to prepare for Aristotle, my cat, to be taken care of and fed and watered and ensured he’s snuggled and played with.
I have to prepare my entire apartment to have everything at countertop height and the amount of everything, the weight of everything happening is so heavy on my shoulders. I’m not sure if any other disabled/chronically ill people feel the same way. We just want to go outside and scream that we are tired of the hospitals, the doctors, the ERs, the bloodwork, the medications, the injections, the looks, the judgements, the lack of understanding from both family and medical professionals, the pain, the chronic fatigue… everything compounds and it weighs us down so much.
And please, to the people who are in my circle, to the people in my support system: this has nothing to do with you. I will always welcome and adore your support and presence in my health journey. And to be honest, I thank you for even being here when everyone else has ran. Sometimes, I just wish that I could crawl into a hole and just hide from the infections, the illnesses, and the symptoms as they chase my body furiously with pitchforks and torches.
It’s nice to find solace, community in a group of fellow disabled and chronically ill friends. As much as my able-bodied friends want to be able to lament and try to say they get it, they really don’t. But, I appreciate your unwavering presence and strong loyalty to remain steadfast by my side as I battle this.
Lupus is a new thing to me. I won’t lie: sitting at a 99.7°F fever everyday and having hypoglycemic attacks everyday is a new thing. Working closely with my rheumatologist, we are determined to ensure that we keep my autoimmune blood levels at a safe level.
Sjögrens syndrome is definitely no stranger to me. I remain hydrated with water the best that I can to keep my mouth moist. I usually suffer from the dry eyes and dry mouth. My skin? Also dry as heck! Any lotion/moisturizers y’all can recommend a little guy?
My thing is, I guess, about this entire blog post for today:
It’s okay to be disabled. It’s okay to be chronically ill. And it’s okay to fucking hate that.
We are not obligated to believe we are “strong” or “warriors”. It’s really nice and endearing that a lot of able-bodied people see us that way. It’s nice because it gives us a sense of being seen. But are we being seen in the right way or just in the way that pop culture deems as ‘in culture’. We are constantly being shoved all of this ableism crap down our throats by content creators that are able-bodied and presumably, healthy as they have never even mentioned an illness, etc.
Do not let the true ableist media get to you.
By the power of the Moon and our own internal fire to exist… we prevail, we persevere, we fucking pull forward.
Leave a Reply