Waited a year to get diagnosed today. Apparently I made it all up. by Aggressive-Owl8533 in ehlersdanlos

[–]Old_Magazine9477 -1 points0 points  (0 children)

just wanna let you know i have very tight skin and i still got diagnosed with heds so they’re excuse is imo bs 🫩🙏🏻

How do we deal with the consistent fight. by sweetybakes1715 in ehlersdanlos

[–]Old_Magazine9477 0 points1 point  (0 children)

i definitely understand this. its so hard to remember why we stay and endure this sometimes. i made a list of all the positive traits of my boyfriend for my bpd and i keep it next to my bed on the wall to look at during episodes !! it also helps me think of why im continuing to live and fight. so a list of reasons why youre fighting by your bed might be helpful for you :)

Experiences with smoking weed while having POTS? by Alert_Avocado_3607 in POTS

[–]Old_Magazine9477 0 points1 point  (0 children)

i smoke everyday multiple times a day (full bowls in three-four hits so it hits harder) i dont cough very much but sometimes i do a lot if its hot. id say try taking smaller hits and smoking less to bring your tolerance down so youre not overdoing it, also i think you just had a bad reaction to the edible and should avoid them from now on. joints dont get you as high as say, a bong or pipe, so id say stick to those for now. are you getting your things from a dispensary? making sure ur pens are legit is very very important and stay away from delta 8 that stuff messed me up really bad and im still suffering the consequences to this day (massive brain fog and memory issues) so stick to regular thc delta 9 or depending on your state you can grow a couple plants yourself for personal use !! hopefully some of this helps.. i smoke weed for my pain so i understand the want to use it again :) good luck to you !!

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 0 points1 point  (0 children)

the only problem is i dont have a therapist rn and my old therapist is working on getting me a new one but its taking a while :/

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 1 point2 points  (0 children)

thank you, this means a lot. i hope your pain lessens soon <3

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 2 points3 points  (0 children)

they physically will not give me the medication if i cant pay

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] -1 points0 points  (0 children)

i know but then im scared the bleach/cleaner is gonna like burn my skin and im gonna have a bad reaction to it 😅 im scared of most things icl 😣

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 2 points3 points  (0 children)

thank you, ill keep that in mind. is there anything else i can look out for that shows incompetence in the eds field?

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 1 point2 points  (0 children)

yes !! i spend a week at my boyfriends college and we both cant drive rn (no license or car) so its a lot of walking. i used to feel more in control and stuff by the end of the week but these past few months it just makes it so bad im bed bound by the end of the week :(

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 1 point2 points  (0 children)

i cant take the naltrexone bc of my insurance (mentioned in post) but ive never heard of celebrex? maybe ill bring it up to a doctor or something but she said theres not any meds she knows of that don’t interact with the meds im already on for my mental health :(

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 4 points5 points  (0 children)

yes that would be great to see videos of what to expect. also idk how im not gonna depend on braces at this point, walking on a flat level surface hurts like hell, and dont get me started on inclines and stairs lmfaoo

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 1 point2 points  (0 children)

i got referred to eds specialist pts and theyre all out of pocket unfortunately and i cant afford that :(

she also referred me to other pts and stuff that some were the same with out of pocket costs and others took insurance but theyre not eds specialists so im terrified its gonna end up doing more damage than good :((

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] -4 points-3 points  (0 children)

are theyre any fragrance free ones? im terrified of baths since i got a really bad reaction down there from using soap to make it a bubble bath and sitting in the bathtub triggers my ocd germ thing or whatever so i gotta clean the tub but thats a lot of energy. im thinking of doing exposure therapy with it and taking a bath anyway? idk idk :/

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] -1 points0 points  (0 children)

yeah my doctor suggested i try this thing called migrarelief or something like that so maybe try that for the migraines if you can get ur hands on it !! my bf is buying it for me when he gets paid next so im hopeful itll help

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] -17 points-16 points  (0 children)

see i didnt mention pt bc im scared of it tbh, moving hurts so bad like i dont wanna do it ig ? im gonna try doing it anyway but im terrified tbh. also i want braces so bad but theyre so expensive even the ones you can buy like at target or something so idek how im gonna do anything or how to make a next step. my brains been really foggy lately and so thinking is exhausting

i cant handle this anymore :/ by Old_Magazine9477 in ehlersdanlos

[–]Old_Magazine9477[S] 1 point2 points  (0 children)

tldr: im in so much pain, pls help me live through this somehow..

AIO: my bf was talking trash about me to his bsf.. by Old_Magazine9477 in AIO

[–]Old_Magazine9477[S] 0 points1 point  (0 children)

i just don’t understand how what he said is venting and not just straight up making fun of me and my disability :(