#would be higher if they counted hip and shoulder hypermobility

[autisticlee]

I somehow ended up on hEDS youtube and this video makes me go HMMMM. for a few years now i've had people ask me if I have hEDS or say they really think I do and should get reevaluated by a different doctor. I always have to say I don't have it because I failed the evaluation from the orthopedic specialist I saw for joint issues and chronic pain. she did the beighton test and gave me a 4/9 but you need at least 5.

after watching this, i've concluded she didn't even test me correctly? they say if you get a 4 but answer yes to things like could you put hands on the floor as a kid then it counts as a point. my hamstrings and back are so stiff and painful to bend forward, but I could do it as a kid. another is if you contorted yourself in weird ways to amuse your friends. I would always put both my legs behind my head at the same time to freak people out lmao. but according to my doctor, doing it as a kid doesn't count....and she didn't really evaluate anything else. she asked if I have the heart problems all the people in this video don't have, and if I had dislocations that specifically required professional medical attention....my parents forced my dislocated bits back into place as a kid. they refused to take me anywhere that cost them money lmao unless it was serious. like I wasn't allowed to go to the doctors when sick until I had bronchitis/pneumonia and could barely breathe. now I just get subluxation mostly which my doctor said I seem to get a lot of very often. that was it.

she didn't test for sketchy skin which I definitely have or those weird heel bumps I always thought were super gross and didn't even know had anything to do with this until now, or anything else from this video. also when she tested my knees, she grabbed one leg by the ankle while I was sitting and said my knee doesn't bend back, but they're all doing it while standing. i think my one knee at least looks like some of theirs from what I can tell, while standing?? but it doesn't do it while sitting because tight ass hamstrings. (don't remember if it's this video or a different one but having unstable hips and/or knees can cause extremely tight hamstrings and muscles apparently due to overcompensating for the instability which makes sense. my hips are so bad and knees pretty unstable too)

anyway. i had a lot of these things they covered on this diagnostic thing that my doctor did not go over and just told me I have "general hypermobility" and said it's not an issue and that my pain and and unstable joints are ~because I need to exercise more and exercising will cure it~ is what she basically said. not even concerned about the fact that I was there mainly because exercising fucked up my shoulder really badly and I told her how I fucked up my knee so bad once and couldn't even walk on it normally for months. also hips and wrists and etc. also my job is physical labor so.... exercise?? so instead of giving me things to help with my joints she just sent me to physical therapy to do shoulder workouts for one shoulder that I could only seem to do while the physical therapist was watching me and correcting me. once I did it at home, I hurt myself very quickly and could never finish the daily workouts 😅

I feel like there's a way better chance i'd have a higher score if it was done properly or I was evaluated with everything in this video, and not just denied right after scoring a 4 on the beighton test. but also impostor syndrome like what if i'm wrong....from what i've seen online in my googling, you have to have a 5+ in order to be allowed to say you have hEDS and self diagnosis isn't as accepted as it is for other things (like autism for example) because it's more specific and a "serious condition" so not sure if I can just say I have it despite it being very relatable. until I can figure out doctor stuff one day and see if I can pass a proper exam, I have to just keep saying I have "hypermobility issues with joint and muscle pain and other stuff and dont know why it's happening" whenever I talk about these problems....which is a mouthful (fingerful? if i'm typing it?)

unfortunately, I have no clue how to get a different doctor?? or if there's even anymore in my hospitals network, especially ones that know more about hEDS? I currently am not even sure what's going on with my primary. I was told he was moving offices and cutting down on how many patients he sees but would have his staff schedule me when he gets to the new place....that was over 2 years ago and im still waiting. I used to do checkups twice a year. idk what to do about it. I can't do phone calls. writing emails and stuff makes me anxious. when I contact them through the mychart app like refilling prescriptions, it comes up as a different doctor now. so not sure what's going on at all and don't know how to or feel comfortable asking???? trying to figure out medical stuff and communicate with medical staff is so overwhelming for me I rather lie down and cry instead of dealing with it lmao i need an adult! like a real one!!

if anyone wants to share info, related experiences, talk about your hEDS or hypermobility symptoms and problems, or anything else like that, feel free to share with a reblog or reply or go to my ask box!

[gracien-system]

Hey this is gonna be a pretty heavy/venty post, if you don't want/need that right now, please keep scrolling.

We've been extremely hesitant to enter the disabled community, less so on the nonphysical side, but still hesitant nonetheless.

This is due to how... all... of our concerns, ideas, and general thoughts have been just plainly discarded by both our PCP and parents.

We've kind of gotten to the point where things which should be good news, or just neutral -- for example, normal heartrate, blood pressure, and O2 before our surgery the other day -- are... somewhat threatening?

Threatening in the sense of "this will be used as proof we're faking/misinterpreting/whatever the fuck".

So, as kind of a vent, a way to remind ourselves of our physical issues, and just... I guess just putting our experiences out into a public space, here's a list of symptoms we've noticed -- and their potential causes.

hypersensitivity to pain in all areas of torso and stomach, along with thighs. This is very likely fibromialgia. The doctor refused diagnosis on the grounds that "I don't diagnose unless you have hypersensitivity in at least 7 'parts' of your body"... and he counted the torso as one part.

high sensitivity to temperature fluctuations, causing nausea, dizziness, soreness, and disorientation. These symptoms can and have been caused by entering a cold environment after being in a warm one, and by entering a warm environment after being in a cold one, and have been triggered by gradients of under 10 degrees (going from a 75 degree outside into a 68 degree inside is enough). This is, from what we can tell, most likely inherited from our mother, who has the full expression of Lupus, although it could be something else, we genuinely have no idea at this point.

a tendency to bleed more than the average person from even fairly small wounds, in spite of having normal clotting factor. For a good while we thought we had low clotting factor, but apparently we don't -- our best guess is that it's due to higher-than-average heartrate? There's probably something else to it, though.

resting heartrate of ~110 when on our Aderall and sitting/standing, ~100 when not on Aderall and sitting/standing, and ~85-90 when not on Aderall and laying down. The most likely thing we've found which would match symptoms like this is POTS, although we haven't done enough research to say conclusively if it is or isn't, however, we've had Covid 6 times, and considering POTS can be a post-viral illness, well, it's not out of the question whatsoever.

hypermobility in shoulders, elbows, fingers, and to a lesser extent in hips. Doc dismissed it as general hypermobility and said it's probably harmless after checking us for HEDS, but figured we should still list it here.

occasional migraines, usually related to heat-shock or stormfronts, that are painful enough to force us to lie down until they're over.

Chronic pain at various points around our body which is usually around a 2, but can spike up to about a 6. The exact areas change day-to-day, but they're usually our knees, other random joints, or tendons, but there is almost never a moment where we're at a 0 on the pain scale.

There are... probably more that I'm just plain forgetting or not recognizing, but these are the symptoms which immediately come to mind.

It just goes to show how much we do experience which is just... kind of ignored due to the fact that we can mask, and because we're "too young to be in pain/disabled/sick".

Honestly, at this point, I don't know if we'll end up making much, if any, progress in understanding what the hell is going on or getting it diagnosed while we're a minor, because of A: how much energy and time it takes to do research into potential conditions, talk to people about it, and worry if we're faking.

and B: how little care our doctor and parents seem to give about our condition(s) as long as we're able to function, and how much they seem to want us to just be normal.

We honestly didn't realize just how much medical gaslighting we've had to deal with, because it just kind of felt natural. We were told that "you look normal to me", which, following our look of both confusion and barely contained rage, was followed by "- wow, would you look at his [sic] face, I bet no one's ever told you that before!".

Anyway, I think that's about it for this post. If you made it all the way here, thanks for listening -- we'll be watching the reblogs on this one, if you have anything you want to add or say, just please try not to let it spread into gatekeepy/exclusionist circles. The last thing we need is a bunch of bastards coming into our replies telling us we're just wanting attention.

Have a wonderful day, all of you. /gen

[delong252l]

Editing Journey

Living with a disability is a very difficult thing to do. I would not recommend it to anyone. However, some people are unfortunate enough in the genetic lottery to be forced to live this way. My husband and I are included in this select group (more about that later). 

I find that one of the best ways to get away from my pain, is to escape into someone else’s imagination. It also helps to get away from the stresses of the life we are currently living. 

There are many wonderful new and established authors on Twitter and Tumblr, and they are always looking for new readers to experience their work. I am beta reading for a few friends, and doing some book reviews as well. (You can find my reviews here and here. I promise, it’s all me.😁) 

According to everyone I have read for, I am a very fast reader, and I can find more errors than a paid editor. So I figured, why not get paid? I looked at what most editors charge, and the prices showing are $0.01 or $0.02 per word, that may not sound like a lot, but if you do the math,  at two cents a word it comes out to $420 for a 21,000 word manuscript (my MG fantasy is the basis for my word count). 

Another option is to charge by hours billed, that is anywhere from $10 - $85 per hour. I can edit a book in a week. I finished a 60k word count edit in 4 days. Most of the time was spent waiting for the next set of chapters. 

I believe that Proofreading, and copy editing are my strengths. I easily find the misspells, and sentences that don’t flow (they just jump off the page for me). 

About the pain, I live with chronic intractable migraines, and the hypermobile version of EDS (Ehlers–Danlos syndromes). Chronic Intractable Migraines, according to the National Headache foundation, are “severe migraines that have continued for greater than 72 hours and have been refractory, [or unmanageable,] when it comes to usual therapies for migraine.” Mine are triggered by many different situations and substances. Some I can control, like diet and some stress; while others are beyond me, like thunderstorms or fluorescent lights, and stress...😉. My migraines are powerful and there aren't many medications out there that can help with the pain. I live at a constant pain level of 5-7 if not higher. Aimovig is helping and so is Medical Marijuana (life saver).

H-EDS or Hypermobility-Ehlers-Danlos Syndrome, according to Web MD, “is a [genetic] disease that weakens the connective tissues of your body.” It can affect the heart, skin, and joints. Mine is centered in my joints. The connective tissue, ligaments and tendons, holding my body together are loose, and don’t always know when to stop. It makes for some pretty interesting party tricks, but at this time in my life (I’m almost 40), I am paying for showing off my ‘double jointed weirdness’ in my youth. Every ball and socket joint, both hips and shoulders, have been dislocated at least once, and they partially dislocate (or sublox) often. It’s hard to walk when your hips aren’t seated right in your pelvis. My knees, elbows, and ankles bend way beyond what is considered healthy or normal ( I can walk on my ankles). There aren’t many medicines out there for EDS that I know of, but the Medical Marijuana helps there too. 

Because of my pain, I am a voracious reader. I know fiction. That is my preferred genre. I will read almost any subgenre too, sci-fi, thriller, mystery, romance, fairytale, fantasy, and any others I didn’t mention.

I will be reducing my beta reads, (I am a bit to much of an editor to feel comfortable with the beta reader limitations) but @ShellyH43722284 will still be reading, if it is a horror novel or something that will give her nightmares, I will be reading it, but otherwise I would like to concentrate on developing my editing and story writing abilities. 

If I am already beta reading for you, don’t worry. I will continue. Instead of pointing out how to fix any errors I find, I will just be notifying you if I find any. 

Please sign up for my newsletter for up to date information and sneak peeks here. Feel free to message me on Twitter @DeLong252L, Tumblr @delong252l or contact me via the form on my blog if you have any questions. I would be happy to discuss prices and times with you. 

Happy reading!

~Lynn~

~4💜 Keep your eyes to the sky~

National Headache Foundation: https://headaches.org/resources/intractable-migraine/

Web MD:

https://www.webmd.com/a-to-z-guides/ehlers-danlos-syndrome-facts#1

Prices on editing

https://blog.reedsy.com/freelancer/how-to-set-your-freelance-editing-rates/ Per word

https://www.freelancewriting.com/copywriting/how-much-should-a-book-editor-charge/ Per hour