had a conversation with my mom and now i'm curious

If unsure, go grab yourself a pencil and compare to these examples:

"Correct" ways to hold a pencil:

(if you didn't know there were names for these, yea I had no idea either until I started looking stuff up lmao)

"Wrong" ways to hold a pencil:

I'm mostly curious as someone who has always held her pencil wrong. No matter what teachers/my mom ever did to try and teach me (pencil grips, elastic bands, etc) it just never worked. I wanna know how universal this experience is hdKJH

(rb for sample size, etc etc, the usual)

i found out pushing doesn't work. that's what my sister does when she thinks something's wrong, she pushes that she wants to go to the doctor. eventually our parents give in. i think i mentioned it because i sent an ask here recently, but my joints have been giving me grief lately. several months ago my knees kept feeling like my bones were grinding when i put weight on them for a few days. more recently, in january i think, after spending an hour or two outside, my hips did the (1/?)

(2/?) the same, that night and for the next few days. sometimes it was fine, usually better mid morning, but other times i couldn't put wait on them. it felt like they were grinding, or going to give up on me. it's been happening longer where i feel like if i move the wrong way, something will pop out. i try to sit up and swing my legs and my hips yell at me with slight pain, so even though they would probably just pop, i wait till it stops, just in case. because i don't want to see (2/?)

(3/?) what would happen if they didn't. but recently, a week or two after i started these new exercises (my mom thinks it's related to that, which it may be slightly, but i don't think so completely), modified push ups so i could get better core strength and stuff, my joints have started popping. started feeling like they'll go out more often. and i mean popping loudly. i kneeled earlier in the process of sitting up, and my sister, who was talking and a few feet away, asked me if i (3/?)

(4/?) okay. it only hurt a little, it's more just the sensation of the popping, tiny pain. but my right knee sort of buzzed, like my elbow did yesterday. except yesterday, my elbow hurt. it felt, just from a random movement, like it actually popped out for a moment, or tried to, and my elbows are usually fine. if it's the exercises, i don't want to just give up my hopes. i want to be able to one day walk on my hands. i know i'd never get back into it after this, even if it's not the (4/?)

(5/?) problem. anyways, sorry, there's a lot to say, i'll try to hurry this up. recently after reading something they flared, when it started happening nearly every time i move, then went down a little, and have stayed that way for about a week. the exercises have been making me feel a little stronger, and i just don't think they're doing this. but, i kept mentioning it. my pain. asking if people could hear it. only my sister cares to listen. she always cares. always listens. (5/?)

(6/?) mental or physical health she's there for me. she keeps saying that i really should go to the doctor, so i keep asking. i mentioned the knee thing to my mom. she said she kept researching but couldn't find anything narrow enough to be diagnosable. that i should just wear the shoes that i can't stand, stop the exercises, start up again with walking when my body calms down, as if it will. i can't stop now. but i don't think she'll take me. i think i have to wait till something bad (6/?)

(7/?) especially after the thing i read, i don't want to wait. i don't want to ignore the signs. if i could save myself so much pain, why can't i try? just two or three days ago i was getting into school when my hip started to hurt. the hallways are one way, so i have to walk around nearly the entire school to get to my class, and i only had a few minutes to get there. i just told myself to keep walking. ignore the fact that i could barely put weight on my right leg. i had to get to (7/8)

(8/?) class. but pushing doesn't work. i pushed to go to the doctor. i got in an argument. i had stuff to do and i was starting to cry, so i just said i wouldn't bring it up anymore. i'd stop. my sister's an adult. i just realized i can ask her to take me. if another bad thing happens, i will. if they flare up again, i will tell my parents that i need to go to the doctor. if they won't, i'll ask my sister. i don't want to. i know my mom tries. she said normally she would, but covid. (8/?)

(9/?) but i have to go. maybe it's nothing, or maybe i will have to stop doing the exercises, and break my heart a little bit more as i give up on another goal. but i have to. i have to. i can't cripple myself for life because i wouldn't go. i have no idea what could happen to me one day or some day soon even if i don't. maybe i'm just overreacting and i'm fine and it's growing pains but i haven't grown in 1 1/2 years and it hurts. and i'm so so tired. been reading, sorry it's like prose (9/9).

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I sent an ask about my joints recently? Yeah, well, this. yesterday I was hesitantly diagnosed with Hypermobility Syndrome, pretty wide across my body but mainly in my lower body. basically the doctor said, that since it's the best guess, I need to go to Physical Therapy and try to strengthen my tendons and joints. so obviously I'm so glad to have a solution, maybe not be in so much pain anymore, but at the same time, I like being a little bendy. I'm not stretchy, not good at gymnastics (1/2)

(2/2) or whatever, but I do like feeling a little different. so I guess it's just like, what if PT makes it so I'm not bendy anymore? is it like those metaphors where you break a stick, then put a bunch together and can't break it? or am I folding the stick in half, forsaking mobility for strength? and I don't think that a diagnosis for an actual chronic illness has hit me yet, I know I'll be more nervous when my first PT comes in 3 days, but I still feel normal.

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Hypermobile anon here, I believe I said I wished it was something a little more for some reason? Yeah, well, good news, I don't anymore. My pain is like, I'm in so much pain, but not actually that much, and I know that I both am and aren't, and it doesn't actually feel like that much, but it is? My point is, tonight's been really bad and I'm starting to think it's good the friend I tend to go outside on walks and stuff with was busy. Also, my mom, in complimenting my drive, (1/2)

(2/2) said that while my sibling was told to do physical therapy to keep their hand working and didn't do it as much as they should, I was doing physical therapy regularly and faithfully to stop my joints from aching. I know my family, mostly my parents, has lots of issues and then just powers through, but you'd think that my mom, who has a bunch going on (allergies, diabetes, random undiagnosable stuff), would understand chronic illness. To her, my joints ache. Sorry, it's not actually too bad.

Hi Anon,

First thing, so so sorry for the delay on this one.  And it’s great that you have continued writing in with updates!

Thank goodness you did keep pushing and get your diagnosis (even if it may be a hesitant one)!  You really could have ended up struggling for a long time.  Arthritis would have been another guess if your doctor hadn’t come to Hypermobility Syndrome.

Hopefully your doctor is treating this seriously, but remember that if any doctor is trying to ignore your concerns, you can very clearly say to them, “If you’re not going to do tests I want it noted in my chart.”  

From the advice of a lot of chronically ill folks, it is also strongly recommended to get your vitamin levels checked, especially b12, iron, and vitamin d. These can actually cause joint symptoms if they’re low enough and lots of things can affect your absorption of them.

It is definitely still possible to build muscle and continue to be flexible.  It takes quite a lot of bulk to start limiting your range of movement, and physical therapy will probably be gradual enough that you can assess your flexibility as you go.

As far as feeling “normal”, having chronic illness actually is really common!  In 2012, the National Health Council stated that roughly 133 million people in the U.S. were dealing with some kind of chronic condition.

It is awful that you’re in so much pain.  Your doctor should also be helping you manage that, since strengthening your muscles isn’t going to be an immediate solution.  That takes time, but you’re in a lot of pain right now.  Anti-inflammatory painkillers can help with joint pain, and heat treatments like warm baths, hot water bottles, and heat-rub creams can be useful too.  Beyond that, you might need prescription treatments.

Your mom is probably just trying to encourage you, but it’s small comfort compared to the level of pain you’re dealing with.  People will often deal with chronic illness in different ways, especially different generations.  It might help to find groups online that are dealing with similar issues, or chronic conditions in general.  Places like reddit, facebook, etc will have groups or subreddits dedicated to creating a community, so you can share your experiences and find other people dealing with the same issues.  You might ask your physical therapist if there are any in-person or online support groups locally.  

You’ll have to find a way to manage your chronic illness, your way.  If your mom doesn’t understand it, don’t worry about her.  You got this.  And your sister’s got your back.  

-Kai, bun

I feel the need to ramble.

Ok, my finger brace came in today! and I just have to say, WHATTHEFUCK HYPERMOBILITY!?!? Before I’ve had to use my entire body to press buttons, and it’s kinda painful. Splint one finger joint and Bingo! suddenly it’s takes so much less energy to operate a dang microwave or press the home button on a phone. Just- what the hell. I’m still really weirded out by all the things that I thought were normal but actually aren’t. 

More serious health/our-fucked-up-medical-system rant bellow the cut. If you’re squeamish than I’d recommend not reading. 

Recently I started having some new symptoms (bloody breast discharge) for no seemingly logical reason. My disability comes along with a billion comorbilities, but this for once, isn’t one of them. It’s not much discharge and I have literally no other related symptoms. I’ve already had an appointment about it,  have done a number of test (which so far are all fine), and have an appointment scheduled with a surgeon. Everyone, nurses, doctors, receptionists, have been absolutely lovely. It’s painfully obvious that it’s partially because I’m so young for these sort of problems. They’re so accommodating, so reassuring, so quick to give good wishes. I’m so glad that they do the for people, but where the fuck was it before? Where was it when I was a child and had an actual ORGAN falling out of my body and was covered in open, weeping wounds and unable to communicate with people or see things properly? Where was that when I had to drop out of school because I was in too much pain to stay in the classroom or do work? Where was that last year when I was struggling to walk too the bathroom, or to take care of my basic hygiene, and unable to eat or drink anything without extreme pain, regurgitation, and gagging? Where was that a few months ago when I was seriously considering getting on the floor in the doctors office and begging them to admit me to a hospital even in Corona times? I’ve never gone to someone and shown them pure desperation, and was really not prepared for it to make no fucking difference. 

To be clear, I’ve had a mostly good experience with medical professionals, probably because I'm an objectivly cute, cis, white girl. There’s just something about my specific issues that no one seems to know what to do with. Even if they take ME seriously they don’t take my condition seriously. But now that cancer, especially cancer of my oh so “precious” female body parts is a possibility, everyone is so concerned about getting me help as soon as possible.

Don’t get me wrong, I don’t mean to say that cancer isn’t a really really really hard thing to deal with. I know. I was my moms primary caretaker when she had stage III cancer and had a very large percentage of her organs taken out. It fucking sucks and that is a serious under statement. But our society really puts cancer up on a pedestal. It’s amazing to see how well our providers can take care of their patients, communicate with a team of doctors, provide emotional support, and make patients feel important (of course a lot of cancer patients don’t get that. I’m going off of my own experiences). But for some reason they don’t seem to do that for people with any other disease.  Shouldn’t it be standard for chronically ill patients to have a care team? I have one now, thank goodness, but it’s the only one that I know of in the state, and they are totally booked. 

So, the thing that everyone is acting so concerned is the thing that has had absolutely no effect on my quality of life. I have full body nerve pain, but my breasts are one of the least painful spots. It’s just pain. It’s not like a migraine, or GI pain that comes with so many other problems. Basically I don’t fucking care about the discharge. I am going to get it taken care of because better safe than sorry, but its so infuriating that that’s the thing I’m getting so much help for. It’s been two weeks, two tests, and one doctors appointment and they’ve already gotten me into the system I would need to be in worst case scenario. But for all my other issues I’ve spent the last three to four years going to endless doctors, doing so many tests and procedures, and I’m only now getting help? And how much of that time was spent in disabling misery? 

I just feel so infuriated and want to laugh hysterically while crying. Well that’s what I would say if I wasn’t disassociate to all hell. 

thx for letting me rant. I know it will work out. This is all just so ridiculous and wrong.