It's really that bad
Let me begin by saying Medicaid was fun while it lasted. No, really! Between the long wait times to speak with someone who cannot explain why everything is bad and taking forever, and the sketch medical transit companies. The endless physical therapy appts and the missed diagnoses. The normal lab results but the crippling pain....So so so much fun to be "invisibly" disabled and on Medicaid in the US of A.
New York ranks better than California for sure in terms of the healthcare I've received. I have a badass team of women providers I'm thankful for, and pray I can continue seeing. Of the 50, CA and NY are "the most liberal, most giving states" so I can only imagine accessing services in other parts of the country. I'm getting by, but losing my Medicaid health insurance will absolutely positively fuckin destroy me and tens of millions of disabled Americans. Surely, SOMEONE WILL STOP THIS MADNESS BEFORE IT ALL FALLS APART!!!!!!!??? IM SOUNDING THE ALARM>>>WE THE DISABLED HAVE BEEN SOUNDING IT FOREVER. EUGENICS ISNT A CUTE LOOK, BUT WE KNOW, FROM THINGS HES PUBLICLY SAID, THAT THE ORANGE TYRANT DOESN'T THINK DISABLED LIVES ARE WORTH SAVING. BUT WE ARE.
WE NEED UNIVERSAL HEALTHCARE BECAUSE WE ALL NEED HEALTHCARE. YOU HAVE BODIES, PEOPLE. YOU'RE GONNA GET SICK OR HURT AND IF YOU DON'T WANT TO DIE OR END UP IN ENORMOUS DEBT, FUCKING FIGHT FOR US ALL. EVERY "DEVELOPED" (TERRIBLE FUCKING TERM STEEPED IN COLONIALISM AND YT SUPREMACY BUT YA KNOW, ITS WHAT WE'RE USING THESE DAYS) COUNTRY HAS IT EXCEPT US. I MEAN COME ON. FUCK. call. harass your reps. if you're abled, you should be making calls once a day, or 1x a week if you're just starting. speak up for those of us who don't have the fucking strength or stamina due to our disabilities. As I type away, I'm listening to Fortunate Son by CCR, "I aint me, I ain't no millionaire's son. It ain't me, it ain't me, I ain't no fortunate one." It should not fall on disabled folks, who you can guarantee are poor because Social Security put ridiculously low income limits on those receiving benefits, to make the damn calls. We too busy calling and messaging each other to make sure we are still alive. I have friends in and out of hospitals and palliative care. I have members of my family who are aging and losing abilities like I lose lighters. I got a bestie on dialysis who is the strongest woman I fucking know. I pray for her longevity because this Earth is a better place because of her, my heart. I got another bestie who's stomach just DOESN'T WORK. like, come on, she should be comfy at home on her TPN, NOT DOING THE HEAVY LIFTING TO ENSURE SHE STAYS INSURED. Get your act together, ableds. This is your wake up call.
What I don't think most abled people understand is that I cannot take you seriously!!!!! Not if you don't make the damn calls about saving Medicaid. Not if you don't redistribute some of your rainy day fund to one of the 300,000 Americans like myself awaiting word from Social Security about our benefits (they love to deny us, but we have Luigis on our side so we will prevail! Deny defend depose!) That's a not so subtle plea to get yall to consider a paid tier of PJs Projx. You will get at least one 30 minute video blog a week, where I, and perhaps a fun guest, TALK SHIT AND EDUCATE. This is for your mind, and since I'm extra silly, you know there will be lots of humor baked in. I'm not gonna lecture you, but I guarantee if you fuck with me and my crew, you will get smarter. I am on this planet to do exactly this: communicate. I cannot just go out and get any old job. I'm currently at risk of being furloughed from the first job that I've been able to be openly disabled at because my employer gets a lot of grants through the federal government. We got the email that shit might get weird financially at any fucking minute, with the defunding of HUD and Section 8. So yea, fuck this authoritarian regime to the furthest level of hell.
I do this as a labor of love, but also I gotta eat!!!
As if the stress of not knowing if my meds and meals are gonna be covered next month wasn't enough to turn 3 of my hairs grey, there's the actual conditions I'm dealing with. The chronic pain being the main one. So what does it feel like, and is it really that bad? Like knives and yes. The pain is immutable. It is intense. It is distracting. It is disturbing at times, the way my joints ache and throb with no real reason, well, not NO reason. It's a connective tissue disorder, suspected and documented by many a smart person with medical knowledge, compounded with a blow to my nervous system in the form of a head trauma at age 11. There's really no telling what is gonna be ailing me from one day to the next. This week it was my 'fuck you' finger, you know, the middle one. On a 1-10 pain scale it was a solid 15. Ice helped but I could only do that on and off. I yelped like a dog getting its tail stepped on when I picked up a light bag with my bad hand. I wanted to cry but when you have chronic pain you don't really do that, or you'd be waterworks all the damn time. My nurse at my iron infusion (anemic cuties stand up, slowly, after eating a steak.) asked me what I was gonna do for my finger pain, cuz it hurt so damn much I had to tell EVERYBODY my business, I guess it's whatever to HIPAA, ya'll can know everything cuz it might help somebody one day. I told her it would be ridiculous to go to the ER when there was no evidence of trauma to the finger, no swelling, nada. Just pain. I said I'm gonna go home and smoke weed about it. And she said honey this is a cancer center, everybody's gonna go home and smoke weed about it. Bless.
In the vein of helping, let me tell you some things that alleviate the pain, other than a magical temperature controlled compression suit. Acupuncture helps. Cupping. Massage. Tuning forks. Craniosacral therapy. All not covered benefits. All out of pocket costs. Physical therapy in a nice warm therapeutic pool is covered, and I'm gonna miss that the absolute most should I lose my bennies. The pool and my psych medicine cocktail. You about to get a whole load of crazy if I can't renew my scripts. If this country can't support its most vulnerable, I'm not keeping my marbles together to be a productive member of society anymore. I'm barely keeping it together now, with my vape pen placed out in the open on my work desk. That's right, I'M COMMITTING TIME THEFT AND I'M DOING IT WITH THE HELP OF A LOVELY MIMOSA VAPE CARTRIDGE. PRAISE BE TO THE GANJA GODDESS.
So, yea. It really is THAT BAD. I need braces and canes and a rollator and orthotics in my shoes and injections and ice packs and heat packs and days off!!!!!!!!!! OH PRAISE BE DAYS OFF. I don't have ANY coming up so like. Fuck that. I will nap in the sunshine in my car in between appointments if it comes to that. And of course I'll be writing and shit talking, cuz that shit helps me process the fuckery that is living in this disabled body, with so many loved ones also going thru their anguish.
Have an amazing Monday. Make some calls. Peace.
