u/NotABreakfastGuy

I know so many people with EDS who sometimes lay on the floor to help align their back, shoulders, hips, etc. I know so many who prefer to sit on the floor. How are you guys doing it? If I lay on my back I will bruise my lower back and push off my shoulder blades, sitting criss cross I will dislocate my hips and likely bruise my legs. To get down to the floor my knee usually has to touch it and I will almost always dislocate my knees and kneecaps in the process. It looks so comfortable, how do you guys do this???

it's also ridiculously hot where I am right now and 2/3 of my ACs are dying so I'd like to be on the floor for temperature reasons

It's not been dx yet but it's currently suspected I have chimerism and or mosaicism (I have major signs of chimerism, mosaic kleinflelter (xx/xxy) and some form of pAIS but no official dx yet - testing is in the works) on top of that we're trying to do genetic testing because Its clear I have some form of genetic disorder (possibly more than one) but my genetic results are all over. Sometimes results are there, sometimes not and I have no clue how we'd go about properly testing me (especially because most labs won't show mosaic mutations in results). If anyone here has a genetic disorder and mosaism or chimerism how did you get tested and dx? Who did the tests (where I live genetics only specialize and won't work interdisciplinary so I keep getting bounced from one doctor to another and I cannot get an appointment - I'm hoping to get an internal referral soon but at the current moment I have no clue). Did you symptoms present weird (some of my symptoms only show up in certain patches of my body and other symptoms look different depending on the patch). How do you effectively communicate your experience to medical providers?

We're trying to figure out what type of EDS I have. Although I meet the criteria for hEDS I also meet the diagnostic for clEDS and show signs of a couple other CTD. The problem I'm intersex and it's currently suspected I have chimerism or mosaicism (I show enough signs of both that there's a theory I could have both mosaicism and chimerism) it means that my genetic tests are all over and we're unsure of what to do or test for, or even how to test for genetic disorders (I'm trying to get to a specialist but it's incredibly hard in my area because of how genetic departments are split up here). Is anyone with here with a rare type dx with either mosaicism or chimerism? Or even a mosaic form of EDS? If so how did you get dx and how did testing go?

We're trying to figure out what type of EDS I have. Although I meet the criteria for hEDS I also meet the diagnostic for clEDS and show signs of a couple other CTD. The problem I'm intersex and it's currently suspected I have chimerism or mosaicism (I show enough signs of both that there's a theory I could have both mosaicism and chimerism) it means that my genetic tests are all over and we're unsure of what to do or test for, or even how to test for genetic disorders (I'm trying to get to a specialist but it's incredibly hard in my area because of how genetic departments are split up here). Is anyone with here with a rare type dx with either mosaicism or chimerism? Or even a mosaic form of EDS? If so how did you get dx and how did testing go?

To preface this, I am new to the intersex community. Although we're not sure what specifically differs between me and non-intersex folks it's pretty clear I am intersex. I am not super familiar with intersex terminology (I know a lot of medical and trans terminology but not intersex terminology) so I'll likely muck up my phrasing. Please be kind about it and correct me.

I've been on T for nearly 3 years. I'm transmasc (exact identity complicated) and this was the first (and currently only) step of my medical transition. The problem is it does basically nothing to me. My voice dropped a little (my voice is still within normal ranges for most cis females), my body hair is darker, and I've grown a little bit of facial hair (although almost exclusively on the right side). I have less effects of T then most people do in their first 3 months and still generally look like a pre-T trans guy or a butch woman.

My last hail marry was my hysterectomy (severe adenomyosis not actually related to being trans) and it didn't really do anything to my response to Androgynes (it was theorized that I might have localized high E levels that were counteracting the HRT but not showing up on tests).

I'm not sure why I don't respond to T or other androgyns unless my body makes them (I went through puberty and although nothing makes sense about it, I had to have responded to androgyns to go through it), the best theory I have is xx/xxy mosaicism (suggested by my gyno) with pAIS (because I didn't originally have high T levels none of my doctors are willing to entertain pAIS despite my responses to HRT), or chimerism with pAIS (I'm not getting super in detail but I have a lot of signs of klinefelter and chimerism not related to the signs of pAIS including visible striping, multiple skin tones/textures, the hair the has grown as a result of T being only on half of my body, two different hair textures with distinct lines where one starts and the other stops, and I have the exact body type that klinefelter diagrams show). Regardless it sucks. I'm dysphoric in a way other trans people (outside of the intersex community) don't understand.

I feel like I'm broken because I have no clue what's going on with me so I can't look to anyone else and see if they had the same experience. I'm tired and realizing some of my dreams around identity and expression are gone, they'll never happen. I'm so tired.

For anyone else who couldn't transition because they're intersex (whether that inability related to HRT or Surgery or something else entirely) how did you cope? How did you come to terms with it. I don't mind most aspects of how my body presents, my body shape is fine, the fact hair grows in different colors and in different locations, that fact my skin is different from other people, etc, doesn't bother me. It does really bother me that I can't use HRT to transition tho and I'm not sure how to come to terms with it.

I recently did WES through GeneDX. The results came up negative. According to them I have absolutely no variants to report. The problem is I do. I have a known rare genetic disorder (MODY12) found through genetic testing. I know my variants. If I did it and everything else showed up normal id be heartbroken (because the Odyssey continues) but go "oh, ig I dont have anything", but I've been dx with a gene mutation. I know I have this gene mutation.

Ugh I don't know what to do or where to go from here but it's not fun either way. I see a genetic counselor on Monday so hopefully that'll help us choose the next steps. Regardless idfk what to do from here but I just want an answer and for this to end.

edit: A little background and then an update. My dx disorder is under a VUS, I am a textbook case for MODY12 and because of its rarity (everyone else with my mutation in ClinVar/ related systems being symptomatic, and amino acids being switched are also a known amino acid switch in other MODY12 conditions) I'm still dx anyway. I was getting this test done because we're currently investigating rare recessive connective tissue conditions. Because of the rarity of what I'm looking at it's not uncommon for people to be dx with a VUS. I came in with the expectation one or more mutation may be a VUS. I was told by the lab they'd report a VUS I seemed symptomatic for. The lab 100% should've seen the mutation and although I wasn't looking for things related to my dx, the fact I was dx with diabetes and all the related symptoms that lead to my dx meant they should've reported it.

I spoke with the genetic counselor today. He said the lab probably didn't report it because it's a VUS. I pointed out that if they didn't report a VUS for something I am a textbook case for, what else did they not report. I am looking at rare conditions, VUS mutations are common in rare conditions, if I had a VUS for a dominant condition or one pathogenic/carrier and one VUS mutation for recessive condition and it wasn't reported that could be very dangerous. I've had life threatening symptoms and I didn't particularly trust them not reporting it all things considered. My Dr agreed and sent in the request for raw data, he also suggested next steps if everything is normal is get mitochondrial testing and Chromosomal Micro Array testing (I have certain physical features that concern him in that regard).

I got Angel Fangs today. I love them. I've wanted them for years, I'm so incredibly happy.

Before getting them I did what any same person would do, go to reddit. I looked at people who'd had the piercing and their opinions on the pain, healing, position, jewelry, etc. I talked to people who'd gotten lip piercings (I don't know anyone personally who has angel fangs, but I have plenty of friends who've gotten lip piercings). I read articles from piercers about it and aftercare. I got fake jewelry and wore it for a couple days just to be sure I wanted it.

I went into it knowing it'd probably look janky until the swelling went down (for me I only really got swollen on one side so it made them look asymmetrical until I had some cold water and ibuprofen), I knew it would be spicy but not terrible, I knew I couldn't change the jewelry for a while, I knew I'd likely have to relearn how to use forks and spoons (the forks work fine for me, no clue how spoons will). I felt prepared.

Then I got the piercing and holy moly. No one told me you can feel the difference in skin texture between the lip and the philtrum. The first piercing went slowly (not sure why but the piercer was super slow on that one and very quick on the other. I prefer quick) and I got to sit in that horrible texture difference for way longer than I want. It wasn't the pain. Don't get me wrong it hurt, but once the jewelry was in it felt fine, I honestly think splitting my lips when dry or getting a dental cleaning is more painful, but the texture was insane. I'd never prepared for it and I'm still a little nauseous thinking about it.

So for anyone looking to get vertical labrets (or any piercing that goes through the lip itself), it's a worthwhile experience, I don't regret it at all (I know, early days), but be prepared because the texture difference is weird and imo mildly nauseating.

edit: After reading through the comments it seems this is not exclusive to lips and is a thing of speed! It seems every location has its own texture and if you go slowly you will feel it! It also means if your piercing is faster you may not notice it.

I have a condition called MODY12. It's a rare form of diabetes. I've always hated having it. I hate the injections. I hate the energy problems. I hate the neurological problems. I've hated it.

I also have other health issues, some common, some rare, some undiagnosed. One of these issues is bouts of severe hypoxia (lowest recorded was a blood gasses test that showed blood oxegyn of 56%). Weirdly though I haven't experienced acidosis with the hypoxia. Ive always wondered why but counted myself lucky.

Recently I learned my MODY is likely the reason.

MODY12 is caused by a GoF mutation to the ABCC8 gene and results in kATP channels staying open throughout the body. This causes seizures (or seizure like activity), piss poor blood sugar, weird drug reactions, and energy problems. It's also been known to protect internal organs and tissue from hypoxia.

My MODY is likely the reason I don't have permanent damage from the hypoxia. I'm so greatful I have it.

Dear fic writer who has stopped posting,

I decided to write this after coming across 5 of you in one night. I need to get this out there for all of you to hear. This is a love letter for all of you. To the writers who went to school, started families, got jobs. To the writers who got bored, grew out of their source, or moved on from writing. To the writers who got sick, who wound up homeless, who had to spend their brain power on survival. This is to those who had to stop and those who wanted to.

I want you to know I reread your fics. I click the kudos button everytime hoping it'll let me give you one more, it doesn't, but one day it'll glitch. I've read through your entire account. I like your style. Some of you I remember the first fic you posted, some of you I only found long after you stopped posting. I check out your friends accounts, to see if you still beta or trade fics. You once had a tumblr blog where you posted WIP updates. I sometimes lurk there, wondering if you gave up all socials or just fandom ones.

When I've looked through all your writing I look at your bookmarks. It makes me sad to think that you gave up fandom, that this place, where you've brought so much joy to others, no long brings you joy. I always love to see a new bookmark; it's almost always in a fandom I didn't follow you for. I'm glad you're still a fan.

Thank you for everything fanfic author, you've given me a slice of joy in my day. One I still go back and consume again and again. I hope you're doing well wherever you are.

Best wishes,

Your reader.

.

.

.

edit: two things, I'm glad this post touched so many of you. This post was for you, no matter if you had one fic or 100, if you had regular readers or basically none, this is for you and I send hugs and love 🫂💜

Number 2, I don't appreciate passive aggressive comments getting angry that I haven't commented on my authors fics. I have, this is not for my authors, this is for the ao3 authors who have stopped writing. I was inspired to write this after coming across a couple of my authors, this is not for them. I do comment on active fics and I do comment on the accounts that have been abandoned.

I had surgery on Friday, today I popped a stitch. It was stitched and super glued, how did I pop this 💀. I doesn't even hurt, it just bled. EDS is such a weird thing to live with.

edit: it's a laproscopic incision, my doctor was confident with the two protections and how small the incisions were I wouldn't pop.

I got an acceptance into my dream masters program yesterday and wanted to ask for advice. I graduated high school early (not homeschool, I just was in a weird situation) and later joined an accelerated bachelors program (it was year round so instead of taking 4 years, it took two). I turned 18 earlier this year and know my age will impact certain things about my interactions with the program. I'm not anxious or getting cold feet. I intend to go and make the most of it, but I was wondering if anyone had advice for a person in my situation. The field is social science (interdisciplinary) and research related (the program is one of a couple in my country so I'm not comfortable sharing the exact degree for privacy reasons) in case that impacts the advice.

This post is both a celebration and answering a question a lot of people have before entering the program.

Celebration:

AHHH 🎉🎉🎉 I CAN'T BELIEVE I GOT IN. WHOOP WHOOP.

Answering the grad school questions that plague all BS in psych students:

You definitely can get into a good masters with a wgu degree. I don't really have work experience (I'm on the younger end student wise), I had a professor from my first college (I transfered in 12 CUs, took 24 credits in total) and my mentor at WGU write my rec letters (I think they reflected well on me, but I doubt it made me stand out). The program itself is one of 3 or 4 in the country so it winds up being incredibly competitive (it's also the only one at a public school so it's a lot cheaper than the other options), and I still got in!

Now there are a couple things to keep in mind that I think helped me a lot. I had a writing sample as an optional essay and I submitted my capstone project. I purposely wrote my capstone with the knowledge I'd use it as a proof of ability to grad schools so I made it the best it could be. I didn't just want to pass, I wanted it to be the best of my abilities. My final project was 30+ pages long and explored a bunch of different areas of psych (the area I want to work in is interdisciplinary so this was important, if you're aiming to work in one area, I'd highlight that). If you're nearing your capstone and want to get into grad school, it's worth putting extra effort into your capstone.

You also want to keep in mind recommenders. I was able to get my mentor to write me a letter, but despite having a couple professors at wgu I thought I could ask for a letter from, I couldn't get a single one to reply to my email after leaving their course. This is something to keep in mind. Most programs require two rec letters, look into the programs you like and see what they require, ensure throughout the program you have people to lean on for rec letters because that can screw you over.

Recently a friend of mine has revealed that they're in a domestic violence situation and asked for help getting out. They're physically disabled and have two young physically disabled children. They don't have family they can go to and are unsure what comes next. We don't think the police would be particularly helpful (no physical violence) and are wondering what would be the best crisis resources for them (I live in the US and am unsure what's respected and well known in Alberta). Thank you so much for your help.

edit: they live in Calgary

edit: because this may not be clear in the post and I don't want to offend anyone. This is about how so many doctors see hEDS and ignore red flags because hEDS itself isn't a "dangerous condition" even if the symtpoms aren't related to hEDS at all.

I am tired of how many doctors go "hEDS, that's not a dangerous condition". I understand studies show it doesn't shorten lifespan, that it's not life threatening or deadly. I understand that many of us are given the non dangerous diagnoses (EX: pots- *the heart condition that's "uncomfortable" but your biggest risk is a concussion* ) but it's sucks how many doctors see hEDS in a chart and go "oh so none of these symtpoms are dangerous".

I've been dx for 2 years with hEDS, but it's a place holder diagnosis. We know I have something, likely connective tissue in nature. We know it's probably recessive based on family history. We know that I meet the criteria for hEDS. We also know 2/3rds of my health (and as my health is getting worse it's closer to 3/4s) of my health aren't even slightly explained by hEDS.

I've had symptoms that could have been life threatening that were completely ignored because of the hEDS dx (ex: I have a long unexplained history of severe hypoxia and salt wasting without acidosis). I've had doctors explicitly turn to me and tell me "well, those numbers are concerning but hEDS isn't dangerous so you're okay". It's terrifying.

It sucks being the worse case of *inset random condition that explains a symptom because we cannot find an underlying cause of my problems* my doctors have ever seen and having them brush it aside because "well hEDS is weird, it's probably that, we shouldn't worry" about things that are life threatening.

It scares me so much that I'll get something like cancer that's missed till I'm dying because they go "that's probably a new hEDS symptom" (even when they're not recorded symptoms or comorbidities). I wish doctors would quit seeing *hEDS: "not a dangerous condition".*

Also to add: I'm getting new doctors, I've finally been able to get my records (I turned 18 fairly recently) and it means I can get new doctors with proof of my symptoms. I'm just tired of how this is impacting my health and scared because I have no clue what I have or frame of reference for my future.

I know plushie dreadfuls has some things that can make things cheaper (ex: sign up with email and get 10% off your first order), and I've heard of some other offers (buy two and get free shipping). I'm buying my first one soon and I'm wondering what tips and tricks exist similar to what I've mentioned to make it a more affordable venture.

I have a condition known as MODY (type 12), a rare type of diabetes. it can look similar to other types of diabetes and is generally misdiagnosed. I was diagnosed with t2d when I was 14 and at nearly 18 I convinced my doctor to run a monogenic diabetes panel, where we found I had mody12. it's a condition most people have never heard of (including doctors) and is very rare (current estimates place it as having between 1000 and 5000 people diagnosed in the USA). I'd like to bring more attention to it and educate people about it, ask me anything!