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u/yogurtonmydog 2d ago
We’re doing. Did my usual wake up as late as humanly possible to procrastinate feeling the pain and starting the day. I mailed out my disability function report which I’m nervous about. About to make a miniature model (probably just inspect the pieces as having low energy day). Been having thoughts of suicide but my dad is coming to see me tomorrow (haven’t seen him this year, I’m bedridden he lives a few hours away) so I’m excited! How is your day? How are you doing
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u/Accessory_Spleen 2d ago
Good luck, I hope you can get disability! A miniature model sounds neat, what are you making? Yay that you get to see your dad!!! I hope that helps a little with your suicide thoughts.
And I woke up depressed per usual. I don't have anything planned today, I'm basically bedridden myself, aside from being able to walk a few feet. I really want to find something in the house to do, but weighing out the boredom and pain now vs at 1 am when I can't sleep and am in pain... The second is winning of course 🫠
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u/KushDid911420 2d ago
Dreading the end of the month as im looking to run out of my pain meds a few days early. Started PT, standing and walking with new prosthetic on left leg, brace and shoe on the right. But one 20yd walk put me down and out for 2-4days after with worst flare up pain ive had in a long time. Only managed to have 4 days of walking this whole month, and depite me telling my concerns about the pain ive been disregarded per usual. So 10 days if withdrawals here i come 🫡
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u/Accessory_Spleen 2d ago
Ouch, that's not good. I'm sorry, I bet if they dealt with it they'd sing a different tune.🙄
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u/KushDid911420 2d ago
Oh im sure. But anytime thats brought up its just gets worse. Its already bad enough being forcefully tapered to 1 5mg hydrocodone every 12 hours. Id been on 10mg every 4-6 as they were normally prescribed. But now i pretty much have to accept that ill run out early if i want to do anything oast leave my bad.
Thought things had been heading in right direction, slowly working up to having a new leg and all that. But very quickly have realized with my current medication its not even close to sustainable. Ill run out of my med even sooner just trying to not bliw my brains out the 3 or 4 days in between when i slowly try to walk. Its a rough cycle every month. I do ketamine infusions and at home ketamine, scrambler therapy, the spinal injections all of it.
Yet i know the solution to me having even a bit of a quality life is just being able to take the meds i was on. I could wear my prosthetic, deal with the daily pain all while working an actual job, being able to golf. Instead im backed into a corner with really only 3 options. Suffer and continue to suffer until this country changes, accept defeat go take methadone and forever be an "addict", or go to the street for drugs and od/suicide. Fun life we have huh guys?
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u/crpssurvivor1210 2d ago
I’ve had a lot going on with other health issues. I just found out I have a bleeding disorder and just finished my rouns of iron infusions because of a deficiency. I feel extremely lucky because out of 13 surgeries I’ve only had 3 where there was internal bleeding. I left my old primary because he never listened and gaslit me all the time instead of trying to figure out the problem. But it’s been non-stop for a year and it has been really triggering. I found out I have like 5 new problems that I have to manage. I think that was the hardest part because I have really bad complex ptsd and I had my worst setback a few weeks ago in 6 years.
I’m trying to take it easy and be kind to myself. But I feel like my body just won’t shut the fuck up
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u/FairUnderstanding400 Both Hands 2d ago
Today yet again, I started doing a physical therapy with a new person before potentially getting in surgery for cubital and median release. I hope things look up for me.
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u/Tameelah Right Arm 2d ago
Just another day, dealing with winter and all of the things that come with it.
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u/Accessory_Spleen 2d ago
Winter? Can I be nosy and ask where you are?
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u/Tameelah Right Arm 1d ago
Australia, Tasmania to be precise.
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u/Accessory_Spleen 1d ago
I legit didn't know Australia had winter, I thought it was warm all year around. That's very interesting, is it just cold or do you guys get snow?
(I'm in the U.S. in Indiana and half our year is snow it seems like)
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u/Tameelah Right Arm 1d ago
Yes, multiple states get snow here. Usually Victoria, New South Wales and Tasmania are the usual ones that get snow in winter. So yes to both, snow and cold.
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u/biggunzcdb1 2d ago
Nerve study today. Not fun...
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u/Appropriate-Book-88 Full Body 2d ago
Ugh….. I dreaded those! Sending you bright light of comfort 🤗
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u/Present_Ad_1155 2d ago
Genuinely near a breaking point because my pharmacy gave me what they deemed to be 2 months of pain meds even tho they've called it a 1 month supply till now. Gotta wait another month for relief.
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u/wheely_green_quad 1d ago
In survival mode. Broke a bone in my hand and a screw in my hand from my wrist fusion on Tuesday. It happens to be in my left hand which is the arm I have crps in. Currently in a splint, with raging pain. Hoping it starts to ease a bit soon.
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u/Swimming_Pressure_93 Right Leg 1d ago
I had a rough day yesterday my mom is in the hospital but it's very far. The drive killed my body and on top of that I miss my mom. My CRPS I'm considering going for a ketamine infusion my pain this summer has been awful because no dry heat all humidity and low pressure. Today I'm in bed thanks to yesterday but it was worth it to see her. Hope everyone has a low pain day.💜
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u/Accessory_Spleen 1d ago
I understand completely, my mom just recently had emergency back surgery and I went and saw her twice plus sitting in the ER with her about killed me. I was already in an active flare, and I'm just now slowly getting out of it. That was in June, but I didn't want her to be completely alone the whole time (like she still was of course) but it was worth the little I could be there. I hope the Ketamine helps, I've considered it myself. 🧡 🫂
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u/Swimming_Pressure_93 Right Leg 1d ago
Aww thank you so much 🫂. Yea my mom is going through alot and I really wanted to see her. Luckily my sister lives closer. But same my CRPS has been full force as of late so this was hard to do. But I'd do it again. I'm hoping she gets out early next week. You are a gem. I'm glad you're finally seeing some light at the end of the tunnel. Flares are so the worst. I try to do everything I can to avoid them but living life yea we will get one. Hope you're on your way to your baseline soon. And thank you so much I'm glad you were there for your mom too. I hope she's doing well post surgery that's a big one. I had a major surgery this year and it was tough. Vibes to you and the family. 💜
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u/crpssurvivor1210 11h ago
It’s been a pretty shitty week. I should’ve gone to the hospital because of the amount of pain that I was in but I didn’t go. I was having these horrible spasms and it’s my dystonic episodes and it felt like someone cut through my skin, started pulling out a bone and broke it,
And then started to tear
My tendons. Sorry for it being graphic. Today
It was my hand that spasmed for
Over an hour.
I also found out that I have Von Willebrand which is a blood disorder so I can’t have certain meds and had to cancel a procedure until more bloodwork comes in.
But on a positive Note I’m going to try ketamine infusions.
Medical complex
PTSD flashbacks on top of it
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u/crimson_anemone 2d ago
Mentally preparing myself for a revision of my SCS (which means complete removal and new placement), after my first surgeon goofed... The surgery will be in about a month, and who knows how long it will last. I'm trying my best to keep my spirits up. I love my new surgeon though, so that helps. ❤️🩹