#spine spoonie

[thedisablednaturalist]

Of course the kaiser Permanente office has a "why not take the stairs" sign right by the elevators. MOST PEOPLE COMING HERE CAN'T USE STAIRS YOU FUCKS

[im-lost-in-ikea]

anybody else scared that mangione being a person of interest in the United Healthcare case is gonna be used to justify the further oppression of those with chronic pain and chronic illness? No? Just me?

[spookysalem13]

Just a fellow spoonie 🥄 here to share a relatable hilarious 😄 video.

Being chronically ill, you have to learn to find the humor in your diseases. For me, it's a major way I get by day to day.

This made me smile, I hope it can make you smile as well.

[whatshouldwecallchronicillness]

When the test results look terrible, but my symptoms are pretty ok...

[crazycatsiren]

I'm going to hard agree with @crippled-pvp here: fellow chronic pain warriors/members of the fucked up bones and joints club, don't waste your time and money on a chiropractor. A solid orthopedic specialist who knows pain management can do wonders.

[autisticspoonieblog]

When I meet God he will have to beg my forgiveness for putting me through this (my back hurts)

[wheelingwithgrace]

Being a young person with a disability not commonly seen at your age sucks that much more because on the way hand, you have everyday people in your life telling you you're too young and you have doctors telling you your to young and refusing specific treatments (i.e. surgeries and stuff)

In my case I have a fucked up back, least I can put it. Some of it, including osteoarthritis. Surgeons refuse to operate on me because of my age. They say they don't want to operate on a young adults spine.

Don't get me wrong, I don't blame them for not wanting to potentially fuck up the rest of my life - but also I think that should be my choice. I'm genetically predisposed to back issues. I don't doubt that when I'm older, I'm likely going to need surgery anyway.

The fact that they want to go ahead with burning my nerves, which can have their own set of complications, but I can't make informed decisions about other available treatment options?

Perks of being a young disabled person? Am I alone in this?

[tiny-tokunaga]

Do you have a breakdown when you see "normal" for test results, or are you healthy

[hannahcrazyhawk]

Really feeling the fractures in my spine today. 😖

[thedisablednaturalist]

So I'm confused

My new doctor says that my MRI results only show for my thoracic spine "Presence of mild disc protrusion at T8-T9. No significant neural foraminal or canal stenosis. No nerve impingement. Follow up as scheduled to discuss plan of care"

And for my cervical spine: "No canal stenosis. Mild C4-C5 left neural foraminal narrowing"

I honestly could barely decipher this myself but she says that it means I don't have calcification or degenerative disc disease but my old spine doctor said it was? She says because I'm so young 🚩 that I shouldn't be in pain from it and it is probably all due to my fibromyalgia. She did say when I get older it'll probably progress?? She said I don't need my injections but she would refer me to their pain management specialist for a second opinion just in case because I did have them before and they helped my pain. I'm so confused and tired and honestly feel a little like crying because I feel like I'm being pushed back to square one. Everything my old spine doctor told me made sense and all my symptoms lined up with what he said. So what, was he lying or exaggerating? Am I somehow faking? Then why the fuck does my spine hurt so bad and why do I get numbness in my hands and feet? Why do my knees hurt so bad? It can't all be fibromyalgia can it? Somehow I have to be sick enough to get my pain managed and taken seriously but not too sick because then I can't be cleared to do work I've already proven I can do.

[mezmer]

Yeah anyways what if I DARKENED my hair. I should not until after this wedding because I am supposed to wear a pastel purple dress. No idear actually. I know I am going to practice wearing heels because all the bridesmaids are womenlets. Actually the bride and groom are both under 5'4 LOL I should get pretty reasonably sized heels

[spooniestrong]

I get to pee in a cup today! Yayyyyyyy! /sarcasm

[roseandbee]

...

[crazycatsiren]

So, funny story. I've been going to the same place for the same injections with the same doctor every month for years now, and still, almost every time when I show up, a nurse will look at my chart that dates back to 2020 and ask me questions such as "is your pain better" or "are you in pain again/still".

I've run out of answers that aren't awkward, honestly. Maybe I should ask the doc to put a sticky note on my chart that says "the usual, every month, lol" or something along that line.

I mean, how exactly do you explain chronic pain, when people don't seem to comprehend the "chronic" part of it?

Anything short of a spine replacement, I'm never going to get "better". These are the bones I have to work with, a congenital condition that currently has no permanent fix. The best bet I have with what modern medicine has available as of 2023 is palliative, not curative. Otherwise, why am I keeping up with this routine and staying in a pain management program? I sure have no love for needles or spending money.

"Are you having pain?" No ma'am I pay money to get stabbed by 4 inch needles once a month for recreational purposes.

Wanna hear something abysmal? Surgery at best estimate as of yet has a 30% chance of success at fixing a spinal defect like mine, and the odds of something going terribly wrong, well, kind of far exceed that. I'd be risking paralysis for maybe a 30% possibility on the optimistic side, of never having to deal with back pain ever again.

This has been my life for more than 20 years. I haven't had a 0 pain level since I was 15. There's a reason why it's called pain relief and not pain eradication.

[alexithymia-rose]

I've had nerve damage in my lower spine since I crushed the discs down there. When it flares up, BOY DO I KNOW IT! I don't know how else to describe it other than it feels like molten hot claws shredding down my legs.

Molten hot claws. Shredding down my legs.

And they go weak and movement hurts worse. I don't know exactly what causes it. When I try to explain it to doctors they don't want to listen. It's NOT lightning bolts shooting down the back of my legs. I know what that pain is.

But just try to imagine that. If you've ever had an animal claw your legs up just imagine that but molten hot and constantly from your hips to your feet. I wish doctors would take me seriously.

[sunnysk1nny]

Just realised when I get to the stage when you can see my spine, people will see how messed up my spine is from my spine disease 😅😅😅😅😅😅😅😅 talk about spooniespo! 🥄