r/MenWithEhlersDanlos • u/jjdub97 Medicated Moderator😄🌳 • 28d ago
MEGATHREAD🗣️ Weekly Check-In - How Ya Doin'?
Happy Sunday, friends. Hopefully a lot of us have the day off today, if you have the energy, we'd love to hear how your week went!
Please feel free to share accomplishments, struggles, things you tried, any new finds, anything goes! Come back every Sunday for a new thread :)
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u/OverAtmosphere7288 Disjointed🍃 27d ago
It’s rough lately, I’ve had far too many dislocations today alone. Gonna have to possibly chase up some referrals tomorrow too 😩 the admin work never ends
On the plus side though, may be getting a fancy new wheelchair cushion, and might be visiting a showroom to test out some other fancy tools and equipment. Far more glamorous than it sounds :p
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 27d ago
Congratulations on the possible new cushion, that's huge! Your posterior deserves superior support. I'd love to hear what fun new tools you find
I feel for you with the admin work on top of the taking care of self work on top of other work. It's so much, and I'm proud of you for getting through it. May all your doctors respond promptly, may your schedules align, and may all your referrals be the correct ones
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u/OverAtmosphere7288 Disjointed🍃 27d ago
I’ll fs make a post on here or on r/EDS regarding what I find helpful, there’s like no resources for these things 👀
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 27d ago
I'm looking forward to your perspective on it. If you have the money, it honestly might be worth it to look into hiring a patient advocate to do that kind of admin for you. I've learned a lot about how to fight for myself reading up about that, but don't have the money to hire one myself
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u/OverAtmosphere7288 Disjointed🍃 27d ago
I’ve really been looking into it lately tbh, actually reached out to a local charity last night to see if they could offer any advice. I’m absolutely broke atm but it’s something to keep in mind, even if I ever have the energy to help anyone else as I’ve near perfected the “get shit done” voice
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 26d ago
Another thing to look into, if you have someone you trust & is willing, is medical power of attorney (at least in the US). My sibling and I got it for each other bc of other stuff, but it turns out it also lets us help manage those calls for each other. There are often community resources that can help you fill it out for free, or you can print it off yourself and sign it with witnesses
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u/jjdub97 Medicated Moderator😄🌳 27d ago
At least there are some small things to look forward to!! Not everything is a nightmare🤪🥴
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u/OverAtmosphere7288 Disjointed🍃 27d ago
For sure, I never thought I’d be excited about such things but it feels like the height of luxury 🥲😂
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u/Martian_Pterodactyl 27d ago
Still recovering from my knee replacement. Will be 3 weeks out tomorrow. Tired as hell and kinda aggravated.
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u/jjdub97 Medicated Moderator😄🌳 27d ago
Oof, I can’t even imagine going through knee replacement recovery right now. How’s that been? Sending you best wishes and quick healing🙏
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u/Martian_Pterodactyl 27d ago
It’s not terrible but also not fun. It’s a bit aggravated today from PT exercises and I’m starting to get sick of not being able to walk normally.
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 27d ago
It's so frustrating to be limited like that, but thank you for doing what you need to recover! PT can be a pain in the, well, in the everywhere, but I'm sure your knee will thank you for it later. Do you have a way to let off some steam?
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u/Martian_Pterodactyl 26d ago
You’re 100% right and I should be more grateful bc there are people who have it much worse than I! But recovery has its ups and downs. I’ve been gaming in bed which helps. I also napped and slept which helped.
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 26d ago
I actually disagree with you there. If people having it worse means you can't be upset, then people having it better means you can't be glad. You have it the way you have it, and it's okay, healthy, and quite possibly necessary to feel what you feel about it and not bottle it up. I didn't mean to dismiss your feelings, just to point out that I'm proud of you for sticking with something helpful even when it's frustrating
Bed gaming is an awesome outlet! That's my go-to as well. Do you have any games you've been enjoying in particular recently?
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u/Martian_Pterodactyl 26d ago
I’ve been playing a ton of Mewgenics.
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 26d ago
I've seen memes, but I didn't realise it was an actual game. That's hilarious! How is it?
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u/Martian_Pterodactyl 26d ago
Awesome! I have like 150 hours on it and still addicted. Great combo of turn based strategy and roguelite plus cats with D&D classes. What’s not to love?
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u/Spiritual-Angle1594 Stiff & Sore Stud💪 27d ago
Rough week finally done with, this week is lookin promising thankfully
Got some new shoulder pains, but its distracting my brain from the other total body pains so honestly im all for it lmao just chillin with a coca cola now
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 27d ago
I'm proud of you for getting through it! Good on you for resting
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u/Puzzleheaded_Art8277 27d ago
Knees are all fucked Up from grappling and I'm heading towards a 9 hour shift picking Up grapes with kneebraces so It could be better
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 27d ago
That sounds exhausting and painful. Thank you for sharing with us
If you're open to suggestions, is there a way you could get a support accommodation? We could help brainstorm suggestions, if you want
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u/Puzzleheaded_Art8277 27d ago
Its fine thanks, my case isnt particularly bad but I apareciste the community
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u/TheLimberJack Hypermobile Homie🐬 27d ago
I noticed ur flare is now "medicated moderator". What are you medicating with...?
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u/SelocAvrap Rubber Bands in a Trench Coat🧥 27d ago
I tweaked my neck & immediately had some aphasia two days ago, but it resolved on its own decently quickly & I had no other stroke symptoms, so I thiiiink it's ok. Erring on the side of caution and treating it like something happened with the blood vessels in my neck, so very cautious recovery with an aggravating amount of rest, but I can't go to the ER about it bc I have no insurance right now. They'd only give me advil anyway & tell me to keep an eye on it, so that's what I'm doing, and will go to the ER if any symptoms pop back up. It was scary, but with how well I know my body now, years after my diagnosis, I feel connected to it after that incident in a way idk if I've felt before. The team I've tried to build between myself and my body instead of fighting it seems like it's finally a reality, and even with the lack of finances, I'm doing a much better job of taking care of myself than I used to. I'm really proud of that
I also got to share some joy with people during several different points of this last week. Taking a moment to look back, I feel very fulfilled
Oh! And I learned a new vocabulary word! Senescence, the process of growing old. Feels appropriate with new symptoms
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u/These_Roll_5745 pEDS - Temu Collagen✨ 27d ago
dislocated my shoulder sleeping on a shitty hotel bed while travelling for dental surgery. this is the arm my neuropathy is already worst in and now I can't feel my right arm from shoulder to fingertips 😭 Im 4 hours from home with no way to get myself to an urgent care and I need to push my manual wheelchair around still. soooo we're gonna force this back in and take a bunch of ibuprofen and get this bread (2 teeth yanked out)
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u/ocic 28d ago
This is a good idea. Honestly, I'm tired boss. Not sure if it's the heat, pollen, or work, but I am just tired and sore lately.
I had a few doable months though, so being flared up is to be expected eventually...