u/NotABreakfastGuy

I'm interested in applying to the PhD in Genocide Studies. I've looked into the program and I love the look of it. I've read some of the graduated students works as well as looked through what current students are researching and the program seems to be exactly what I want. The pay, the layout, the vibe, etc. Although I've never lived in Worcester I've visited many times - not my favorite place but I don't hate it. I'd likely live in campus housing due to some personal circumstances - I've heard the food sucks (are we talking inedible or meh?) but that's something I'm willing to deal with. Everything seems to be a good fit but I've seen some comments on this sub about how the school is rapidly declining and I want to know how true that is (constant faculty layoffs, poor management, etc).

Does anyone else here have invisible veins? My veins are so small they're basically invisible. I have about 4 In my entire body that can be seen. Blood draws are impossible, and half the time my veins don't have blood (I've been told it's a pots thing 🤷‍♂️). I'm curious if anyone here has invisible veins instead of super visible ones.

I know how hard it can be to find medical providers who are respectful and inclusive. Please share providers and clinics you know about.

Callen-Lorde NYC: has locations in Manhattan, Brooklyn, and the Bronx. Provides most forms of GP care including psych, gyno, and dental. For patients 13-23 the HOTT program is available. They offer sliding scale payment and for HOTT program members they offer complete fee waivers. For patients ages 13-19 HRT is done off premise- without insurance- free of charge (in a medical RV outside the clinic) to ensure that any changes to laws (namely, threats of Medicaid no longer working with clinics providing gender affirming care) wont stop care options. Most staff are queer, many are trans themselves.

My mom saw my hair today (I haven't brushed it so it looks a little different then usual) and immediately said "you look like a boy!".

That's it. That's the post. Happy days 💜🎉.

When I was little one of my teachers brought in a record player and some speakers for show and tell. I can't really remember if the speakers were a separate item or part of the record player (child me thought they were a set but I can't remember enough to know if that's accurate). If I'm remembering right the player had a small strip of light around the base that filtered through the rainbow (I could be remembering this part wrong). What I know for sure is that the speakers could be bought in white or black (my teacher mentioned preferring it in white when she bought them) and they were a little square with a see through tube/cube filled with water on top that would filter through the rainbow on beat with the music (it would push bubbles through as well). I know there were wires so I'm assuming it wasn't Bluetooth. I know it was expensive. I know when not playing music both the player and the speakers looked incredibly mundane, pretty but mundane.

I fell in love with this set when I was 6 and have been wanting to get it since. I've been trying to find it for years and haven't been able to. If anyone knows what it is that would be great!

Forgive this sounding terrible, it's 3AM, I'm exauhsted, want to cry, and have no clue what my next steps are.

I did WES with genedx a couple months ago. It reported nothing but we knew that I had to have at least one VUS that should've been reported (I have an unrelated rare disorder that's been dx already) so we (the counselor I saw and myself)) got my raw data from the lab and I've been slowly going through the variants to see if anything makes sense (it doesn't have to be clEDS, it can be something I've never heard of, it can be supper common, IDC, I just want answers). I found out I have homozygous mutation to TNXB - except it's been classified as benign. It feels like a massive fuck you when I'm experiencing such serious symptoms, when if it was a VUS or pathogenic I'd have access to care and an answer. I'm not sure if the 5 other people listed in clinvar had homo or heterozygous mutations regardless it's been classified as benign. If anyone has had a similar experience I'd love to hear it.

Edit: it seems in certain systems it's been classified as a VUS, which would hopefully allow me to get a clinical diagnosis. ClinVar has it classified as benign currently which isn't particularly helpful to this.

I wanted to share my story because it's the kinda thing I wished I could've read a year ago. Currently I'm adenomyosis and symptom free.

I started getting periods at 10, by 11 I couldn't walk the first day (the cramps would be so bad my upper thighs would cramp and I couldn't move them). They stayed incredibly painful but slowly started going away. At 13 I stopped menstruating all together - the gyno I went to told me this wasn't a concern until i hit 15. Well right after my 15th birthday I started spotting. It was light - painful - and lasted 2 or 3 months. A new gyno put me on depo and told me to come in in 3 months. A month later I was bleeding through the largest size tampon and the thickest pad in under 3 hours. I went to the hospital where I was put on aygestin (non birth control). This helped a little but not enough. In August of that year I would be put on Testerone (I'm Trans masc) - it significantly reduced my symptoms. That was until I lost access to T because ✨insurance✨ (aren't they wonderful). Although I only went a month without it my symptoms greatly worsened and we had to up my dose of both aygestin and T. This pattern would continue and every couple months we'd up my aygestin (even when insurance wasn't messing with it). My LH levels were 0.3 and I was still bleeding every day, when we tried tapering my aygestin the bleeding increased to a normal period and we decided to stop tapering.

During last summer I spent 3 months without my T (due to ✨insurance✨ - this is an annoying pattern) and it greatly worsened. By the end of the summer every bowel movement felt like I was being ripped in half, I was in constant pain, I forever felt like I had a UTI, had barley any energy, and the perpetual iron deficiency was impacting my muscles. I decided I needed a hysterectomy. The problem was there were no hospitals that would do it near me until I was at least 18 so it was a no go. I was told that I would have to wait for another year to get a procedure that would greatly improve my quality of life because of a fucking birthdate. Luckily I didn't give up searching, low and behold I found a hospital that would perform medically necessary hysterectomies on pediatrics. They didn't advertise this, I found it when combing through their list of procedures in the pediatric website, I immediately got an appointment with my gyno who put in the referral.

In early February I had my first consult. She talked with me and although she preferred we tried other things (namely an IUD) she respected my concern and agreed to move forward with the path to surgery (there were other things she needed before approving surgery but those were the standard things). She'd have me do a transvaginal ultrasound a week or two later where id be dx with adenomyosis (for some reason it was heavily concentrated in a single region and was literally bulging out of the wall). In early may I had a complete hysterectomy with a double salpingectomy. My healing wasn't the greatest but it was the best we could expect with my other health conditions (namely a CTD).

Post op there's been a lot of revelations, namely how many other health things were caused by my adenomyosis.

I have MODY (a monogenic form of diabetes), and although Ive been diabetic for a while, my symptoms have been progressing in a very weird dangerous way. I spent last year using GLP-1s and an insulin pump despite my c-peptide levels being high. Within days of the surgery I stopped needing the pump. I've officially been pump free for 2 months and it's incredibly freeing.

I had high LDL that wouldn't respond to lifestyle. Within a month of the surgery it would drop from nearly 200 - 116.

I lost 10lbs within 3 days of the surgery - infact the first thing I noticed when getting dressed after the surgery was that I was thinner. I've since lost more weight and am hoping to lose more (I've been overweight - mildly obese for a couple years and no matter what I did nothing improved it).

I can eat fruit again - I spent years with 24-7 period cravings and nothing except iron rich things sounded good - now a lot of that food sounds exceptionally greasy.

My pelvic pain is gone. I'm so greatful I wasn't left with permanent damage from the adenomyosis. I was fully prepared to go to pelvic floor therapy because of how much pain and dysfunction I was experiencing but the surgery took it all away.

My kidneys are functioning far more (they weren't failing but we're working less and less, my body is working with T far better than it ever had, my WBC is in healthy ranges for the first time in years. I have less hip dislocations. And more I'm probably forgetting to mention.

For most people adenomyosis won't cause all these problems but for me it did and we had no clue. For most people a hysterectomy isn't life saving physically but let's people live again. For me it literally saved my life, my other organ systems were slowly shutting down and we still aren't sure as to why. Regardless - I am officially e months adenomyosis and symptom free - there is a future without this for many of us.

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.

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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.