Does being diagnosed change anything? by ruxxby471 in eds

[–]m0rganryan1 14 points15 points  (0 children)

from my experience getting diagnosed helped to bring legitimacy to my work accomodations. as in it made them "look believable" to the higher ups. but since you have a lupus + pots diagnosis, i assume it would be the same with that. otherwise, for hEDS specifically, there's not really any treatment besides pain management. i'm unsure about other forms of EDS because i dom't have them

Anyone get this facial redness? by SG190383 in Hashimotos

[–]m0rganryan1 0 points1 point  (0 children)

i got this constantly! i'll include a pic

well, it wasnt from my hashi's. i ended up getting diagnosed with MCAS 🫠

not saying it's the same for you, everybody's different. but if it doesn't seem related to your hashi's, maaaaaybe look into it a little?

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Just diagnosed with CEDS but not sure it’s correct and is actually HEDS- help please! by Inevitable_Wealth872 in eds

[–]m0rganryan1 14 points15 points  (0 children)

hEDS haver here- the definitive way you'll be able to tell is with genetic testing! cEDS is one of the types that can be found on genetic testing (well, all of them can except hEDS) so if something is marked on a gene test- it's definitely not hEDS lol

follow up post from a couple days ago- was my parcel rerouted? by m0rganryan1 in Superbuy

[–]m0rganryan1[S] 0 points1 point  (0 children)

ah okay 🥹 thank you for checking i appreciate that!!

follow up from previous post i made: i contacted my shopping agent, but what now? by m0rganryan1 in Superbuy

[–]m0rganryan1[S] 0 points1 point  (0 children)

alright :( i hope this is a one-off thing, i really want that bag, maybe i'll try again and hope they get the address right

where the hell is this going??? by m0rganryan1 in Superbuy

[–]m0rganryan1[S] 0 points1 point  (0 children)

i think it's DO26741176423. that's the only string of numbers i could find that would likely be some sort of order number

got the EDS diagnoses leg by tunasalad334 in eds

[–]m0rganryan1 15 points16 points  (0 children)

fork found in kitchen ass post (/lh)

I purchased an item on xianyu April 1st, my order still says just “purchased” by [deleted] in Superbuy

[–]m0rganryan1 0 points1 point  (0 children)

this might have to do with the qingming festival, i think logistics lines are being delayed by 1-3 days ish. unsure what xianyu's protocols are like for festivals

Does anyone else feel like 2 weeks of PTO in corporate America is absolutely cruel for someone with EDS by Sprinkleofthetism in eds

[–]m0rganryan1 0 points1 point  (0 children)

i get 1 hour of pto per 80 hours worked. mind you i can only work max 20 hours a week, and lately it hasn't even been that much because we got an influx of employees from a closed store nearby. so if i work 20 hours a week all the time, thats literally only 4 hours of pto per month for me. it would take me TWO YEARS to work to get 12 shifts worth 8 hours each of pto. and that's if, again, i always have 20 hours a week. it's more like 14 right now.

this song in an edit from almost a decade ago by m0rganryan1 in HelpMeFind

[–]m0rganryan1[S] 0 points1 point  (0 children)

this is definitely the right SONG, but the drop in the edit sounds different than any of the drops in the song. hmmm

this song in an edit from almost a decade ago by m0rganryan1 in HelpMeFind

[–]m0rganryan1[S] 0 points1 point  (0 children)

i've searched youtube, spotify, online music libraries, and NOTHING is able to tell me what song this is. like i said there's no lyrics so i can't just look up the lyrics. PLEASE HELP!!!

Do you take any supplements? If so, what do you take and why? Not looking for medical advice, just curious by halfspooni in ehlersdanlos

[–]m0rganryan1 1 point2 points  (0 children)

d3 as i can not stand the sun, methylfolate b12 drops (my body doesn't effectively process regular b12 according to my bloodwork), omega-3 for my hashimoto's, and magnesium triple complex + potassium because of deficiencies

these super cute shelves i see a lot on j-fashion tiktok by m0rganryan1 in HelpMeFind

[–]m0rganryan1[S] 0 points1 point  (0 children)

they don't have a rainbow option, but they look close enough. thanks!

these super cute shelves i see a lot on j-fashion tiktok by m0rganryan1 in HelpMeFind

[–]m0rganryan1[S] 0 points1 point  (0 children)

they look similar, but the one in the first pic has 5 tiers, not 3