#crps/rsd
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bionicbabe0101 ¡ 1 year ago
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I’ve been disabled for 20 years now. A new ‘friend’ asked me recently if it’s gotten any easier with time. I said no, absolutely not. I think she was surprised by that, because she pressed a little, saying it must be easier to accept at least…like there must be somethings I had gotten used to by now?
I really think it’s hard for people to imagine being in chronic pain for that long. She was clearly uncomfortable with this idea that every day I wake up and have to cope with my illnesses and that will always be hard to accept.
I told her that my health was always changing, and the thing I have learned is to try and adapt every day as best I can in a world where healthcare is expensive and hard to access, my employer sees me and others like me as a liability, and very few useful, practical, affordable accommodations actually exist.
She asked me if I had considered trying a ‘clean diet’.
I changed the subject.
(Btw…her husband is a doctor…sigh)
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mars-and-the-theoi ¡ 1 year ago
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Honoring Lord Hephaestus this disability pride month by being gentle with myself and using my mobility aids when I need them during this horrific pain flare instead of putting it all off and acting like I’m okay like I usually do. Does it feel like a setback? Yes. It always does. Never mind the fact my condition is incurable and that I’m always in an awful amount of pain. But I know He wouldn’t want me to make it worse for no reason.
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amplified-pain-culture-is ¡ 7 months ago
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AMPS culture is not being able to stand for more than 15 minuets without being in crazy pain
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stagkingswife ¡ 1 year ago
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On one hand I hate that I’m back on opioids for pain management, on the other hand I love that it’s a rainy day and I can still work with only some mild dizziness and nausea.
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trashbirdthoughts ¡ 1 year ago
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Guess who fucked up at the gym and flared their body.
This silly goose!
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my-disability ¡ 2 months ago
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If you reblog things and say something like ‘you have to unmute’ and the video doesn’t already have an audio description and you don’t write one….. not the best vibes. I’m not saying it’s straight up ableism, but it is shitty
I am not hoh or Deaf but this is something I’ve notice that just seems annoying as hell to have to deal with
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auroramosaic ¡ 5 months ago
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i hate being so disabled! i hate that disability payments are so below a poverty wage! i hate that my friends are growing and changing around me and im stuck unmoving because im too disabled and too poor to do anything significant or follow any dreams or hopes! i hate the distance that disability puts between me and my loved ones! im so fucking sick and tired of it!
AND on top of all that shit im in bodily pain 24/7, with crps, the SUICIDE DISEASE, and for what. fucking nothing
sorry to clog up the dash but im so tired and i just wanna collapse. or at least hear from other disabled people
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marsdeathdefiances ¡ 1 year ago
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Celebrating disability pride month by practicing unsafe mobility aid practices. Like sitting on my walker without putting the brakes on. Not because I think I’m cool or anything it just never occurs to me to do that until I fall 🤷
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ottitty ¡ 2 years ago
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If you have AMPS please know that no matter where you are in your "pain journey" you are absolutely worthy of treatment and people who believe your pain is real because it is. You deserve the accomodations you need, and you're allowed to have ups and downs and flare-ups just like everyone else. You deserve to be remembered even when you enter remission and as an adult with AMPS, too.
There is such a severe lack of support for us and I'm so sorry if you ever felt lost or alone because of that.
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crps-chronicpain-ptsd ¡ 1 year ago
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Do you ever feel like shouting F*ck and Help at the same time? Lately I feel like I’m loosing my grip . The amount of lost time crushes me for the inside .
Chronic pain problems •
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lovinghimwasbrew ¡ 1 year ago
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Hi y’all!
We’re jumping ship from Twitter and coming aboard to Tumblr apparently?
My name it’s Chelsea. I go by Chels.
I have chronic pain (CRPS) 🔥
I work in the medical field (certified medical assistant)!
I’ve seen Taylor four times (Fearless, twice at Reputation, and Eras tour)
Reputation stan FOR SURE!
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bionicbabe0101 ¡ 1 year ago
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I am proud of my body with all it’s flaws and limitations.
I would give anything to escape this flesh prison of pain right now.
Both can be true.
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nhett ¡ 2 years ago
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* PLEASE READ AND SHARE! THANKS! 💖
My older sister, @ashleyhlovestay, has POTS, a disorder of the autonomic nervous system that causes her blood pressure to drop, making her faint. Because of this, she can’t stand for a long time or walk very far without having to sit. She also has RSD and RA, both chronic pain diseases.
@taylorswift has been Ashley’s inspiration and idol since Taylor’s first album came out. Taylor’s music has gotten Ashley through her darkest times when the pain is too much and she feels like she can’t go on. She has been to every Taylor Swift concert in St. Louis, despite being in excruciating pain and having to go in a wheelchair.
Ashley was lucky enough to get VIP floor seats for my mom and her to go to the Eras Tour in Kansas City on July 8th. We’re traveling four hours to get to Kansas City, which will make Ashley’s pain even worse. Because of her health, she will need to go in a wheelchair so she doesn’t pass out.
My mom contacted Arrowhead Stadium, the concert venue, to ask whether they could store Ashley’s wheelchair during the concert. The person she spoke to said that they couldn’t because: “there isn’t enough space”, “it would be a safety hazard”, and “they can’t be liable for personal items.” All the stadiums and arenas in St. Louis have been able to accommodate Ashley’s needs when she has gone in the past.
All I have ever wanted is for my sister to be happy, and Taylor's music makes her happy. This whole issue with the stadium has put a huge strain on all of us, but especially Ashley. We all want this to be a once-in-a-lifetime experience for her that she will look back on and remember fondly. Ashley’s been through so much pain in her life; she deserves at least one night of fun.
Fellow Swifties: please share this message! We are at a loss as to what we can do that would allow her to enjoy the view from her floor seat. 
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amplified-pain-culture-is ¡ 9 months ago
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Amplified pain culture is getting complementary IBS symptoms
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stagkingswife ¡ 11 months ago
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The worst side effect of my opioid painkillers, for me, is the full body itches. I can handle the dizziness, the nausea and vomiting, even the headaches (which cause their own nausea and vomiting). But I hate the itchiness. I just scratched my self so hard I drew I little blood. And on my bad leg, the itchiness hurts.
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trashbirdthoughts ¡ 1 year ago
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Back to exercising daily. Fucking body needs to know who’s boss around here.
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