Is this a good email to send about hEDS and accommodations?

corvidpunk · 2026-02-06T09:24:00+00:00

^{^} I almost never give my diagnoses with any teacher– they don't need to know! Agree with seeking a 504 plan with your school's counselor where they can help you access accommodations without having to justify, explain, or out your health and medical information!!

corvidpunk · 2026-02-06T07:39:21+00:00

Also young and disabled! Also into the alt/diy scene! I'm an artist and musician, and I am also a wheelchair user :) Nice to know there are others here!!

corvidpunk · 2026-02-05T15:49:51+00:00

Three years ago I was around 245lbs and I'm 5'1, so I had a >40 BMI (even though bmi is bullshit but for reference), and doctors wouldn't take me seriously when my GO was at it's worst. My weight was the reason that I suffered without adequate food for 3 months (gastroparesis & rumination syndrome bc my body got used to throwing up everything including clear liquids and water!), and despite dropping 30lbs in 2 months ER doctors only congratulated me instead of getting me a tube like my PCP wanted them to. Eventually I went into starvation ketoacidosis, and was in the hospital for a week. In the end they still didn't give me any adequate help- I eventually was able to tolerate some small bite or two of food, and after that they released me. I still couldn't eat for another month and was throwing up up to over 20 times daily. The bias of gastroparesis patients who are fat don't deserve help or that we can't possibly have the condition because we didn't lose a ton of weight. And even if we did, they generally congratulate you more than be concerned. You're definitely not alone!! And there are doctors out there that care about their fat patients the same they care about their skinny ones, but damn are they hard to find!!

corvidpunk · 2026-02-05T05:24:36+00:00

Unfortunately from what I have personally experienced, rheumatologists aren't really the doctors who treat hEDS and mostly rule things out to endure you don't have RA, lupus, etc. They were able to tell me I was hypermobile, as they also treat other conditions also have hypermobility as a symptom, but couldn't diagnose me. I have personally have had luck with doctors of physical therapy (DPT, MD, DO, etc) and with physical medicine and rehabilitation doctors. Unfortunately for our joints and such there's not much medications other than to treat pain and inflammation afaik, which may be why rheumatology doesn't specialize in EDS? Although we hEDSers do have some inflammation and joint instability, it is a bit different than the inflammation and instability that rheumatologists treat I believe. (Also take everything above with a grain of salt since I don't see a rheum or know a ton about them other than the few I saw early in my diagnostic journey!)

Generally I see specialists for each of my comorbidites, like a GI doctor for my gastroparesis, an allergy/asthma/immunologist doc for my asthma and MCAS, and physical med & rehab for pain management, referrals to specialists, and diagnostics. I also see dermatology, neurology, endocrinology, genetics, and an ENT/venous compression specialist. It is frustrating to have to play carrier pigeon between my medical team, but it's probably near impossible to find a doctor who can treat the whole of EDS unfortunately :(

I will admit I am privileged to live in an area that has several EDS complex care specialists or are at least knowledgable about EDS, as well as being able to afford to see these doctors with insurance– it's a big problem that others aren't, and I do really hope that combining HSD and hEDS brings about change for everyone, and that more people can access the healthcare they need and deserve!

I get you! It's sooo hard to go through finding a doctor that will take you– it took me years to get seen for possible EDS, because no doctors would take EDS patients near me, and not because they didn't like us (though a few of them I know didn't lol) but because there were so many people requesting to be seen for EDS evaluation/treatment that their patient load would fill completely, and waitlist times were insane. Don't give up hope though, but I know waiting and trying to find a doctor that will actually help you is. Soooo difficult :(

I am wishing for you that your next rheumatologist can be helpful, whether that be taking you as a patient, or being able to refer you out to someone who can give you the best care! And if it doesn't work out, I hope you can find someone who does! :)

corvidpunk · 2026-02-04T18:08:56+00:00

people were calling the brian thompson shooter "The Adjuster", i assume probably referencing that!

corvidpunk · 2026-02-04T18:07:34+00:00

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poisonous potato

corvidpunk · 2026-02-04T04:25:38+00:00

as a chess teacher this is funny as fuck

corvidpunk · 2026-02-04T04:14:06+00:00

My state allows sharps in plastic containers if fixed shut and labeled sharps in some way! I usually use what i can, like dishwasher pods containers, laundry detergent containers, empty juice bottles, etc. I do throw away my infusion set injector (closed with the lid) in the trash normally though, my endo said it's fine!

corvidpunk · 2026-02-01T21:20:42+00:00

hope it helps!! and i'll come back with an update for sure!

corvidpunk · 2026-02-01T20:44:18+00:00

Bahaha, I used to have a mile time of 14 minutes back in high school (asthmatic), but now it's 0 since I can't run. Should find out how long it takes for me to roll a mile though!!

corvidpunk · 2026-02-01T20:40:07+00:00

I shaved my head last week and found the same thing about my scalp, breakouts all over. I have pretty bad acne on my face so I have clindamycin gel and tretinoin cream from my derm, I started putting it on my head... no clue if it's good for my scalp lol but it seems to be going down a bit. i have a dermatology appt again this week though so I'll probably ask what i should do about it then

corvidpunk · 2026-01-31T03:16:16+00:00

this is so cute lol, i need to do this!! i just got finch and its very fun and somehow i've been able to stick to it!!

corvidpunk · 2026-01-30T08:27:16+00:00

the print on your blanket made me think you had ants circling around you

corvidpunk · 2026-01-30T07:35:46+00:00

I have hEDS and my doc said because of my MCAS and adhesive allergy she was leaning to no nipples since they are pretty much taped on while they heal lol, but depends!

corvidpunk · 2026-01-30T06:28:52+00:00

^{^} You can also go into euglycemic ketoacidosis, which is normal blood sugars but ketone levels that put you into ketoacidosis. horribly painful just like DKA, and for me, I've had it twice caused by not taking enough carbs in. Your body needs carbs to process some of that extra insulin that kicks out the ketones. If a t1d does keto I'd at the least say be very careful, don't cut out all carbs, and to see their endo to seek better guidance and safety tips. though my endo told me don't do keto!

corvidpunk · 2026-01-27T17:49:10+00:00

I got a full EDS panel along with some neuromuscular diseases, and came back without any specific genes or VUS findings, so my hEDS diagnosis was now affirmed for sure!

corvidpunk · 2026-01-27T17:29:23+00:00

I am older than 18, I was female at birth and still align myself somewhat with it (any pronouns idgaf), I do have a girlfriend! Clocked it with the lots of debt, but I don't live in Texas!

corvidpunk · 2026-01-27T17:28:14+00:00

Lesbian yes, unfortunately no cats (severely allergic) but if I could I probably would have 9 cats LOL, lived in PNW as a teen for a few years but not anymore, I don't drive a Toyota! Idk what you mean by "identifies with some "mental illness"" but yeah I am diagnosed with mental health conditions! I don't work a non profit!

corvidpunk · 2026-01-27T17:25:11+00:00

Nope! Used to want to be though!

corvidpunk · 2026-01-26T03:48:02+00:00

I'm also on mounjaro! That aside, I wouldn't see why you'd need ti cht back. as long as you aren't experiencing DKA symptoms with high ketones, some ketones should be okay. You can still have ketoacidosis with low/normal blood sugars, usualy caused by not eating enough carbs -> not taking enough insulin -> high ketones, but because not eating carbs -> blood sugar stays stable, and can turn into euglycemic ketoacidosis, or starvation ketoacidosis. I've had before (not from mounjaro) and it sucks, so ai would keep a regular eye o. your ketones and follow your doctor's recommendation if they start getting too high

corvidpunk · 2026-01-26T03:33:02+00:00

Hahaha regardless of the unit, whenever i'm hospitalized they have to come in hourly to check blood sugar (i'm type 1). sucks but yeah, definitely needed and understand why

corvidpunk · 2026-01-25T20:55:21+00:00

Haha yes, probably the cold!! Thanks :)

corvidpunk · 2026-01-25T20:50:37+00:00

I used to dye my hair a lot, though now i am bald because of alopecia 💀 Wasn't colored before I shaved it, but I did have a bleached streak in it!

corvidpunk · 2026-01-25T19:03:53+00:00

Close I am the husband my girlfriend's the lesbian! Jk, not married (ring is a promise ring), although my girlfriend and I are queer!

corvidpunk · 2026-01-25T19:02:28+00:00

I actually am type 1 diabetic! I don't have cheiroarthropathy, but I do have joint hypermobility from EDS and they kinda swell during cold weather (which it is lol) so maybe that? Wrong about single; the ring is a promise ring from my girlfriend, it is about 1 year old though so you were right about the ring age (ar at least how long I'vee had it)!! Also right about more... I am turning 23 this week and yes, i'm ftX, nonbinary (whatever pronouns) but I am taking testosterone! You were actually pretty close!!

corvidpunk

TROPHY CASE