not-a-medical-student

[not-a-medical-student]

13.03.2016 twelve days post op.

sittin pretty! less pain, less bleedin, less bad stuff! :)

[not-a-medical-student]

01.03.2017 around 7 hours post op;

top left picture: to show the swelling [or lack of] on the outside of my mouth top right picture: to show how much i can open my mouth bottom picture: the graft sight from inside my mouth - this is the skin they took to create my new urethra, and instead of stitching it together, i’m assuming they cauterised the area.

Alright, so! I was scheduled to go in at about 8am, which got changed around to 10am. I had a shower at 6am, with a pot of surgical scrub and got told to wash everything including my hair, with it. I put two gowns on, a lovely nurse helped me with that, and she also helped me put my compression stockings on.

My surgeon came to my room to go through everything, he seemed nice, quite to-the-point with things but was happy to answer any questions I had. We went through the consent form [understanding the risks of bleeding, pain, infection, and the graft failing]. After some time my mum turned up, too.

The anaesthetists came at around 11am, they were also really kind, asked how I was doing and we walked into theatre. The theatre was opposite the room I was staying in, when I got in there, I got asked to confirm my date of birth and the surgery I was having, then got up on the surgery bed - that was when I started getting a little bit nervous.

My surgeon was there, injecting me with a bunch of stuff and I could feel it going into my arm and the noise and things were kind of splashing on my arm too. I didn’t get told they had done the anaesthetic, but I suddenly got really dizzy and my eyes got super heavy and I fell asleep.

Next thing I know, I’m awake on a ward with a few other people, I think I was kind of sleep moaning (I do that occasionally). The nurses and health assistances were asking if I was alright, if I was in pain, and I wasn’t really but I had these boots on that were annoying me because they had wires on and I thought I was tangled up. The surgeons assistant (who really is gorgeous omg) was sitting next to me and when I asked if it had been done, he said “yes, I was in there scrubbing and everything went well.” so that was a relief.

Pretty soon after they took me up to my room where my mum was, she was holding my hand and since then I’ve had a nap and been eating loads of food - sandwiches, fruit, juice, all sorts.. Minimal pain, my mouth feels like it’s been getting a bit more swollen which is to be expected, no bleeding (knock on wood), no temperature, all good! Hope it’s just onwards and upwards from here! 

[not-a-medical-student]

Pour one out for a real one.

[not-a-medical-student]

one of the best academic paper titles

[not-a-medical-student]

If anyone's looking for really gentle or disability friendly exercise...

Doctor Jo on YouTube is a physical therapist who offers lots of therapeutic stretching and exercise videos for specific conditions and pain relief. [x]

Leap Services is a Canadian physical therapy group that has a YouTube playlist of gentle exercise routines. All of these exercises are done in a chair (except for one which is done on the floor) and are intentionally adaptable to different bodies and needs. [x]

Yoga with Zelinda on YouTube has yoga that's adapted to a large number of conditions, for instance, providing a playlist of routines that don't require kneeling and another of chair yoga. She also offers yoga for specific health challenges, like fibromyalgia and mobility issues. There's a playlist of yoga routines for people with bigger bodies as well. [x]

Santosha Spirit on YouTube has yoga routines for people with chronic fatigue, chronic pain, POTS, and EDS. [x]

Yoga with Shaunneka on YouTube has a playlist of slow seated yoga, including chair yoga, as well as a playlist of gentle yoga. [x]

Qinergy on YouTube has tai chi sets broken down into easy tutorials. There is a seated version of her shibashi set. [x]

Perth Tai Chi Academy on YouTube is similar to Qinergy. It provides a seated version of daoyin yangshen qigong. [x]

[not-a-medical-student]

Small health rant.

My right hand pinky finger is numb and I feel it to numb over and over again all day. It started last night after I pulled off a bandaid that was too tight and stuck pretty hard to my skin (it was wrapped around my pinky). It’s been like this all day and it’s bothering me because it feels like something changing in it to make me aware of it again. I couldn’t draw tonight because it felt so weird. It’s also my weird finger that suddenly went all crooked months ago. I read for the pinky finger it can’t be carpal tunnel related so who knows what’s going on. It’s making me very nervous that the future of my hands are in jeopardy because I love drawing. It’s one of the skills I’ve worked the longest on and I do it less and less because of school and chronic pain. When I went to the doctor for my pinky finger suddenly becoming misshapen they were basically like “that’s sucks here’s some arm braces that may or may not help just tendonitis” and didn’t address was may have caused it. Makes me want to cry tbh, I feel so frustrated. No one believes I have a connective tissue disorder (no one has diagnosed me for whatever reason) until shit gets worse and they can see my bones popping out.

#marfan #marfan syndrome #ehlers danlos problems #ehlers danlos #rant

[not-a-medical-student]

[not-a-medical-student]

it's hard for me to find any info on things (i'm a bit dumb when it comes to medical articles) and i haven't had certain medical appointments yet where i'd get more answers and i'm not quite sure if these doctors will *have* proper answers when it comes to my case and their realm of knowledge so i'm curious if anybody who is well researched or has experience with these things knows any of these things

is it possible to have classic cah but it not be caught at birth, or with it's presentation is it pretty much always caught at birth?

is persistent urogenital sinus common with ncah as well as classic cah? also is it possibly common with pcos?

what kinds of cah and ncah would not necessarily show up with 17-ohp testing?

also curious if anybody knows if persistent urogenital sinus is common with eds?

Hey! I'll try to provide some answers. As always, do want to give the disclaimer that we are not doctors and cannot provide medical advice.

It could be possible to have classic CAH that is not caught at birth if you have simple virilizing CAH, but salt wasting CAH is almost always caught in infancy because people with SW CAH will go into a salt wasting crisis without steroid replacement. So possible to not get diagnosed with classic simple virilizing until later, but incredibly unlikely for salt wasting CAH to not get diagnosed until adulthood.

All the articles I can find discussing PUGS discuss it in the context of CAH with ambiguous genitalia. I haven't been able to find any information on PUGS with NCAH.

NCAH sometimes will sometimes present with borderline 17-OHP levels that are not high enough to automatically diagnose NCAH, so an ACTH stim test would need to be used. If you have a rarer form of CAH not caused by 21-hydroxylase deficiency, such as 17-alpha-hydroxylase , 11-beta-hydroxylase , or 3-beta-hydroxysteroid dehydrogenase deficiency, there are different criteria for measuring hormones and often genetic testing is required for diagnosis.

Could not find any specific information on that, sorry!

Hope this helps <3

-Mod E

[not-a-medical-student]

HELLO????

#genetics #chimerism #chimera

[not-a-medical-student]

CDC finally fuckin' recommended the new COVID boosters for everyone in the US. letting my american followers who don't check the news know because i've been turned away for wanting to get an extra booster & now won't be anymore & it's Lovely. most americans are not going to get these and are going to grumble about them, which sucks as far as spread goes - but DOES mean u can schedule with ur local pharmacy sooner rather than later. please do so. ur immunocompromised friends and ur own body will thank u.

#covid #vaccines

[not-a-medical-student]

the man who owns and runs the thai restaurant in my town knows me by name. he is one of the kindest and most thoughtful men i know. i started ordering from his place back in january, which was when i got my fibromyalgia diagnosis. back then i was using a walker, had limited mobility in my entire body but especially my hands, and was very visibly in pain. i always ordered the same thing: yellow curry with no meat, potatoes and carrots only (i have texture and other dietary issues). he always made it a point to make sure i could get out the door and carry the food safely. he had his workers package the food so that it was easier for me to open. as i kept coming back and i told him a little bit about my health status, he would always encourage me to keep going. he told me about how the spices he used were good for inflammation and began to edit the recipe just for me so that spices that were even better for fighting inflammation were used. he’d give me extra portions and despite the fact that i would tip every time, i realized later that he never charged my card for them. as time went on and my condition began to get better, especially with the help of a physical therapist, he would make encouraging remarks and tell me how happy he was for me. the day i came in without my walker, he practically jumped for joy, and despite my insistence, he gave me my meal for free that day. i continue to make progress with my conditions and i continue to go to the thai place. this man who does not know me personally and who i hardly know anything about is one of my favorite people. it’s interactions with humans like these that make loving life easier. and his curry really does help my chronic condition. it’s comfort food taken to the next level.

#got me tearing up in the club rn #humanity #chronic illness #chronically ill

[not-a-medical-student]

[not-a-medical-student]

[not-a-medical-student]

☤

Welcome!

This blog is for myself and those who are interested in topics such as surgery, biology, and miscellaneous medical and scientific things relating to humans.

I enjoy making simplified ‘translations’ of articles full of medical jargon, sharing studies in general, as well as introducing different medical concepts. This blog is completely for hobby and educational purposes!

This blog is not for those who fetishize or are insensitive to any experiences presented on this blog. Any blog that is related to gore and other harmful behaviors will be blocked, and any rude/insensitive comments towards any person or group will be deleted.

☤

[not-a-medical-student]

This one is hard to answer. I’ve never dislocated a joint, but I have subluxations all the time and one is permanent and am getting tested for Marfan soon. Idk how that works but whatever😂

#not diagnosed……..yet #connective tissue disease #connective tissue disorder #marfan syndrome #marfan #eds #ehlers danlos problems #ehlers danlos awareness #ehlers danlos syndrome

[not-a-medical-student]

from one hypermobile person to another: what's your favourite brace/mobility aid? (feel free to ignore if this is weird)

not a weird ask at all!! so I have two-

the first are these knuckle braces I got from zebrasplints.com (not a sponsor I just love their product) that were super cheap but good quality stainless steel splints that brace hypermobile knuckles and also are adjustable and very nonassuming/pretty cool looking in my opinion. my knuckles lock up the wrong way if they’re in the same position for too long, and as an illustrator that can be a problem lol. the braces are very helpful in this regard.

and the second is ofc my wheelchair- it was super cheap and is probably around 10lbs too low of a weight limit for me, but it’s collapsible for travel and wide enough for my strong and powerful hips and it’s a good friend to me. I don’t have quite the upper body muscle I need to wheel around with it for long stretches of time, but that’s just one more motivation for me to get strong like I want, and also, I never go out with the chair without my husband (I’m scared of rolling down hills). anyway tho- I have limited mobility because of chronic pain that developed as a result of having marfan, not specifically marfan itself, but it’s all the same at the end of the day and the wheelchair lets me leave the house for more than a couple hours at a time, and I love her.

#marfan syndrome #hyper mobility #mobility aid

[not-a-medical-student]

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#notes #medical notes #med notes #pleiotropy #phenylketonuria #marfan syndrome #marfan #albinism #genetics #genes