#still trying to see a geneticist about EDS

[healingheartdogs]

How does one go about getting tested for MCAS...

[trixree]

Hey i just visited your blog after binge reading several of your star wars fics and saw you've got POTS + assorted chronic medical fuckery. My spouse has the unholy trinity of POTS/EDS/MCAS (featuring guest artist Migraines) and boy do i feel for you if your combo is even a little bit similar. Crossing my fingers for you that the neurologist is a good fit! They tend to have their shit together when it comes to dysautonomia (and hopefully know a lot of the good med combos). I'll also put in a recommendation for electrolyte drinks -- i think it's not uncommon for ppl with POTS to have electrolyte/salt deficiencies, and i know it's been helpful for my spouse to chug 20-30 oz of propel or re-lyte water every day. Compression garments (esp. tights) have also been helpful for POTS, but not always great for digestion if they go over the stomach. Medical grade compression starts at 20-30 mmHg.

For appetite stuff, since I'm not sure what the underlying cause is for you idk if this will be helpful/applicable, but when it's hard to convince your body to eat I'm generally in favor of just going for anything that sounds appetizing to you even if it means eating ice cream 3x a day :P if it's a nausea thing, though, spouse may have some better recommendations, and I'd be happy to ask or send you their way. Best wishes and take care!

Per my last post, I'm catching up on old Asks, AO3 comments, and messages received during my hiatus! (Psst, go do my Fanfic Poll) This is so so so sweet of you, thank you SO MUCH! I rambled on quite a lot below the cut about my health journey the past year re: POTS and GI stuff, in case folks are interested in how I've managed. Disclaimer that I am NOT a medical professional and this is absolutely not medical advice, these are just my experiences and things that have worked well for me.

First off, what a DELICIOUSLY FAMILIAR COMBO of things! I was told at my last immunology appointment that I "almost certainly" (his words, not mine) have EDS (my mom has it, too, and my hips are constantly popping out of place) but 1.) I can't afford to go get diagnosed (see: unemployment, medical trauma) and 2.) one of my friends has been stalled for MONTHS trying to get a clinical geneticist to confirm her EDS diagnosis because, apparently, there is a great deal of resistance to testing folks for EDS right now given the increased visbility of EDS patients on TikTok. My partner is in med school and we've had really long conversations about the so-called "TikTok Triad" (POTS, EDS, and gastroparesis - which are all conditions that are acutally linked together with the clinical data we have) and how it's impacting both how physicians practice and the care that patients receive. This reddit thread is a good example of how this plays out, if you feel like braving reddit on this fine afternoon.

My neurologist is amazing and has done a lot to help me with my migraines... unfortunately the GI stuff is still kicking my ass. All of your recommendations are things that I've started doing over the last year to manage symptoms: my compression socks are my BESTEST FRIENDS and Drip Drop is my favorite electrolyte powder - they've got the best flavors imo and isn't as PAINFULLY SWEET as Liquid IV. I've also adopted a really high-salt diet. As far as appetite goes, my management strategy has been to smoke a lot of weed (I live somewhere where recreational use is thankfully legal, so it isn't difficult or unsafe to get ahold of it) but that's unfortunately expensive and can actually make persistent nausea and appetite loss WORSE over time (see canabis hyperemesis) so I've recently gone cold-turkey off of pot to see if I can manage the daily nausea and appetite loss with pharmaceuticals alone (namely phenergan). I'm seeing my GI in the next week and I'm going to lobby my ass off for a prescription appetite stimulant. I've lost a lot of weight in the last year (and I was already pretty small to begin with, so the weight loss has made my chronic pain a lot worse unfortunately) and I am a firm believer in following one's cravings in order to eat. I order a lot of take out and cycle through the same "safe" foods (usually some kind of cereal with soy milk, an Ensure protein shake if solids are an absolute no-go, and simple rice, potateos, and chicken works). The other night, my partner tried to entice me to eat an oreo ice cream sandwich during a bout of brutal nausea and I cried because I fucking love oreo ice cream but my body HATES having things inside of it <3 I've also found that excercise can SOMETIMES (not all of the time) help my appetite. I have a stationary bike and a basic set of weights at home. Stationary bike in particular is something I'd HUGELY recommend for anybody with POTS that deals with excercise intollerance. Sitting down to get my cardio is WAY BETTER than anything else I've tried in terms of how badly my symptoms get triggered. I'm also currently medicated for my POTS (I take ivabradine and it's made a big difference for my quality of life on the whole, especially with regards to the fatigue that having a constantly elevated heartrate will generate.)

I do appear to have some sort of motility problem (most likely IBS-C) and I'm taking medication for it that has HELPED, but not nearly enough. I poop more than once every twelve days now, which is awesome, but I'm still constantly nauseous more often than not (Zofran, Dramamine, and Phenergen are my bestest friends) and my appetite is nowhere to be found. Hopefully I can get my hands on some appetite stimulant. As for the nausea, I've been informed by my electro cardiologist that many, many POTS patients report diminished appetites and chronic, debilitating nausea, but that "the mechanism relating the two is unexplored and largely unknown." So basically he said, "that sounds ROUGH buddy. Good luck though!"

(Hence me sharing my strategies cause I know, colloquially, that lots of us are dealing with this.)

[thebibliosphere]

So my new physical therapist told me that they think I might have EDS based on the fact that my cervical spine, shoulders and elbows are all extremely hyper-mobile. However my rheumatologist told me that I don’t have EDS based on her own examination (which was not thorough at all, mainly it was of my hands/wrists) and I don’t have anything autoimmune based on bloodwork. What should I do? The physical therapist put the hyper-mobility issues in my chart so my rheumatologist would have to see it, but she also said that it’s entirely possible that the rheumatologist would be hesitant to diagnosis me with EDS unless my symptoms get significantly worse. In the meantime I’m dealing with chronic pain, nausea and chest pain/erratic heart rate. I’m absolutely miserable!

I'm sorry you're going through that. There's a common theme in a lot of online EDS groups of rheumatologists failing patients in this way.

If your PT thinks you have a form of EDS or a general hypermobility disorder, chances are your PT is correct because they actually work hands on with their patients over a long period of time and get to know the warning signs. My advice would be to seek a second or third opinion until you find someone capable of doing a proper EDS physical.

EDS will also not show up on an autoimmune test. It is not an autoimmune disoder, and needs to be run by a geneticist for confirmation. And even then, there is currently no known genetic marker for hEDS, which needs to be diagnosed by a thorough evaulaution by someone who actually knows what they are doing. A lot of rheumatologists do a very basic strength test, and measure by flexibility of the muscles, not mobility of the joints. This leads to a subset of patients with funky connective tissue problems slipping through the gaps and never getting the help they need.

If you're struggling to find someone willing to help, the EDS society maintains a global database of physicians who work with EDS/Hypermobility disorders.

https://www.ehlers-danlos.com/healthcare-professionals-directory/

Disclaimer: I don't agree with everything they post. Some of it is very exclusionary in terms of the research they post, and there are those more active in EDS circles who are trying to change that. They are still however one of the best resources to use as a starting point for finding physicians and community, and hopefully it might be of some use to you.

But yeah, don't give up. Getting an EDS diagnosis is more than about validation. It affects all kinds of things from heartrate, blood pressure, gastro health, dental care, eye health right down to to what kind of painkillers work, what type of anaesthesia to use in surgery and even the suturing mehtod used afterward. PT methods also need to be adjusted. Which is thankfully something your PT can do without a formal diagnosis, provided they have experience in working with hypermobile patients.

Best of luck, friend. I hope you get the help you need <3

[itsbun]

What’s been going on (TW: medical, illness, big kid stuff)

Since I don’t use my old blog anymore and this one is my “main��� now, I guess I gotta vent here (Please don’t read if you’re not in a good headspace!)

So the last week or so has been crazy for me.  A while ago I had an infected toe and some foot pain, and I saw a podiatrist.  He told me my feet were pointing outward instead of inward and that my feet, legs, and hips were misaligned.  He recommended I see a doctor that specializes in bones and muscles, which I did.  I told her all the random symptoms that I never got answers for (in addition to my feet pain) and she ordered some tests, and wanted me to see a geneticist.  Well... I saw the geneticist earlier than expected (last Friday!), answered like a million questions, and lo and behold, I had my answer to what was causing all my issues.  He says I have some kind of Ehlers Danlos syndrome.  We are waiting for the blood test to come back to see what type.  If all the testable types come back negative, he says I still definitely meet all the criteria for the one they can’t test for, Hypermobile EDS.  Oh, and he wrote POTS and Raynaud's phenomenon in my medical note as well, which I also agree with.  The interesting part is Ehlers Danlos is hereditary, and after asking my mom about her family, we found out basically anyone on her side and possibly my sister and brother could have EDS/the gene to pass EDS on, too.  Since the geneticist appointment, we’ve been told to get quite a few tests and additional appointments booked.  I also have to make some lifestyle changes, medication changes, diet changes, and take better care of myself in general. Despite me being the same Bun I was last week, so much has changed since then.  I’m still struggling with trying to get everything in place.  Not to mention coming to terms with the fact that I have 3 new things to manage and more medication to take for them.  But I’m gonna try to make the best of it.  I bought some cute compression socks because I was sad that I couldn’t wear any of my old cute socks anymore.  Hopefully I can continue to do little things to make all this a little more bearable.  (Anyone in the disabled/chronically ill community have tips for a newly diagnosed person?  Anything helps!)

[cuttlefishkitch]

hello! i haven't talked to you before, but ron said that i could ask you for some advice on writing eds? (i'd like to know things to avoid/common things that could come up in everyday life that would be good to mention/the sort of aids and stuff they'd have maybe?/anything else you think is relevant)

Hi! Sorry this took so long, a combination of ADHD and chronic pain slowed me way the fuck down. Thank you for being patient! 

EDIT: WEIRD HEEL THINGS I FORGOT!!

So, before I get into this I should probably say I technically haven’t been diagnosed with Ehlers Danlos Syndrome (EDS for anyone reading) because it’s one of those syndromes that takes forever to get diagnosed with (it took a friend of mine’s mother over 30 years to get dxed). Many doctors, and everyone I know who does have EDS agree with me that it’s probably what causes my chronic joint pain and some of my other chronic issues. But just because three separate doctors have said “Yeah Probably” doesn’t mean I’m diagnosed!! Only a geneticist can do that!! And they had two-three year waitlists BEFORE the apocalypse happened.

I am diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Small Fiber Neuropathy, and potentially misdiagnosed with Fibromyalgia (once I get properly tested for EDS I might get undiagnosed with this because I don’t have most of the main symptoms of Fibro, but I got diagnosed with it anyway because it’s what doctors misDX you with when they don’t know what’s wrong with you and don’t want to do more tests).

All that said, I’ve done a lot of research about EDS (mainly because it’s the only thing that explains all my symptoms since doctors seem incapable of doing so), and know a few people who have either confirmed or suspected EDS, so I’ll link to some stuff, talk about the symptoms that often come with EDS, explain how the symptoms I have affect me, because just because someone’s not diagnosed doesn’t mean they aren’t having symptoms, and probs elaborate a bit about writing physical disabilities and chronic pain in general because it’s super important to me! 

So RESOURCES aka how to make sure your post never sees the light of day because you’re linking things and tumblr hates it when people give other people information!!

Youtubers! If you want to know about the day to day of living with EDS or any disability or chronic illness I super suggest finding a youtuber that makes videos about their life. My EDS favorites are

Jessica Kellgren-Fozard

Annie Elainey

Amy Lee Fisher

Websites! If you’re asking random folks on tumblr I’m assuming (and hoping) you’ve already done the basic WebMD google searches and looked over the seemingly ridiculous lists of symptoms and related conditions, so here are a few websites that are made more for people than for doctors.

The Ehlers Danlos Society

OhTWIST (That’s Why I’m So Tired)

ChronicPainPartners (the fact that they have an entire section of articles called “Dealing with Doctors” should really tell you something)

Books! If you feel like doing actual reading! I suggest reading books written by people with Ehlers Danlos, to get a feel for how they portray themselves. I’m not saying steal, but it’s probably a good point of comparison to see how your portrayal feels. (haven’t actually read these b/c my ADHD doesn’t let me read)

Ria Ruse by Morgan S. Ray (a superhero book with a disabled super MC!!)

Mysteries of Maybelle by Imani Benfell (Imani is still in high school and has already written and self-published a book cause she didn’t have enough representation for herself how cool is she!!)

Bodies in Motion by Liana Brooks (tw for pregnancy problems and miscarriages in the link, because it’s a blog post talking about integrating EDS symptoms into the story without explicitly naming them as such)

OKAY, now for some rambling about EDS SYMPTOMS!!!

Ehlers Danlos is one monster of a genetic condition in complexity and variety. There are THIRTEEN different identified types of EDS, it often comes with Mast Cell Activation Syndrome (MCAS) and/or POTS, and can lead to various other conditions like gastroparesis, chiari malformation, craniocervical instability, and/or bad teeth. So if you’re going to be writing a character with EDS consider what other comorbid conditions they might also have. I’m mainly going to be talking about Hypermobile EDS (hEDS) because it’s what I probably have and what I’m most familiar with. That said there is a lot of overlap in symptoms with the other varieties.

I started typing this section and realized I was going to have to break it down even more so we’re going to talk about Chronic Pain, Unstable Joints (Dislocations and Subluxations), Skin Things, Mobility Issues, and Other Weird Shit and how those things get addressed separately.

Gonna get the Other Weird Shit out of the way first. Because EDS is a malfunction of connective tissue it can fuck up all sorts of random things. For instance, I and many other people w/ hEDS have trouble swallowing. Shit gets stuck in my throat, I sometimes choke on and have to cough up food, and pills can be hard to swallow, which sucks cause I take A Lot Of Pills. If it doesn’t cause full-on gastroparesis it can cause IBS or other digestive problems b/c the digestive tract is mostly made of connective tissue. It can potentially cause heart problems even if they aren’t as big of a risk as in some other forms of EDS. Premature osteoarthritis is common because what you need is more joint pain. And Fatigue OH BOY THE FATIGUE. And of course the headaches, can’t forget those pesky migraines can we!

AND piezogenic papules!! I completely forgot!! Piezogenic papules are little white bumps that appear when you put weight on your heel. In some people they hurt, but in others they don’t. They’re technically tiny little herniations of fat peaking through the fascia in the heel. They were added as part of the diagnostic criteria for hEDS in 2017!

Now for Skin Things cause it’s not as big a thing in hEDS as it is in other forms. Basically, in a lot of forms of EDS, the skin is extra stretchy and extra delicate. It bruises and tears easily, people with the extreme versions of this can accidentally scratch something into an open wound if they aren’t careful. My skin is pretty soft and sensitive, I def have the typical velvety skin, and as is pretty par for the course of someone with hEDS my skin is a little stretchy, and sorta delicate. I’m not as tissue-papery as some people get, but I almost always have at least one mystery bruise or scrape b/c existing is hazardous. Most of scars are also pretty normal, unlike the extremely papery and atrophic scars (though I have a few tiny acne scars that are atrophic) that are common with other kinds of hEDS. Something that I DO have is Lots of Stretch Marks, all over my thighs, and even down to my calves. Which wouldn’t be abnormal, except for the fact that I’ve never been over 145 lbs and I’ve never been pregnant. Having a lot of stretch marks or striations in the skin without due cause happens because the structure of the skin isn’t as strong as it is in people with a normal amount of connective tissue.

I don’t have to worry as much about my skin but people that do are usually very careful with adhesives because they can irritate or tear the skin, which sucks when you need a lot of bandaids cause your darn skin won’t do its job.

Now on to the meatier stuff and since I’m mostly working backward let’s do Mobility Issues!! These can happen in loads of ways, but a lot of what causes these in people with EDS are the other two things I wanna talk about. Unstable joints lead to increased risk of injury when doing stuff people with fully functioning joints can do.

For context, I’m an ambulatory wheelchair user, meaning I can walk, but a lot of the time it’s better if use a chair. Mine is mostly for my POTS symptoms, but the fact that my legs aren’t also in absolute agony is a big plus. I use a custom manual wheelchair with a SmartDrive (b/c I’m very fucking fortunate and have good insurance) whenever I leave the house and have to be “walking” for more than a few minutes at a time. I can’t fully self-propel in a manual chair because it would be damaging to the joints in my arms and hands, but the smaller chair is easier to maneuver in less than accessible spaces (like almost everywhere). There was about a month-long span where I used a very cheap and very bulky electric chair while I was waiting on the ideal set up I have now. Before that, I also briefly used, and sometimes still use, an up-right posture cane.

People with EDS have widely varying mobility issues because of how uniquely it can manifest. My cane only gave me a little help with balance because if I used it in any prolonged capacity any pain it took away from my legs was relocated to my arms, and as an artist, my arms are more important to me!

If you’re going to write a character with EDS having mobility issues as a result of their EDS the best thing to do is to narrow down their specific needs. Are their knees complete and utter garbage but their shoulders and wrists strong? Maybe they can get away with using a cane. Can they not stand for longer than 5 minutes because of the vertigo from their POTS? Maybe they need a manual wheelchair. Would propelling themself damage their back and arm joints? An electric chair might be necessary! Plenty of people with EDS use all sorts of combinations of these aides to get around their life, consider how your character’s good and bad days would be. Do they have back up plans if they overestimate themselves? There can be a lot to manage, but don’t let it scare you off! Sometimes I try and make it into a resource management game (because I’m a game designer and that’s what I do), to make evaluating my energy and mobility needs more fun!

But now let's tackle some of the reasons those mobility aides might be needed. Unstable Joints.

Ever stepped wrong and rolled your ankle? It hurts for a few steps and then kinda fixes itself, or maybe it bothers you for the rest of the day and you put it up and ice it when you get home? When I was walking around outside my house that would happen AT LEAST once a month, usually more. Some times I’m sitting wrong and when I get up my knee isn’t a knee anymore and decides to just give out from under me. My knuckles are made of unruly popcorn and they Don’t Want To Stay Home!! Oh! And my shoulder is more often out a little out of its socket than it is fully in.

Unstable joints lead to Dislocations and Subluxations of varying intensity, and some people get them more frequently than others. Some can be severe enough to necessitate hospital visits and even surgery, some subluxations are so banal (like my fUCKING SHOULDER) that you just learn to live with the pain.

If a character is going to be in high action, combat-heavy scenarios, chances are they’re going to be popping out joints left and right. Hell, depending on the severity of their joint laxity they could be doing the same sitting at a desk. Again, it’s incredibly varied. I’d suggest setting some sort of baseline for yourself, of what a character’s joints can and can’t stand up to, and maybe do some research on which joints are most likely to pop out in general (hips and shoulders are big culprits being the wacky ball and socket motherfuckers they are). Then maybe have something pop out or hold up every so often when it shouldn’t cause hey! EDS is kinda just like that! Unpredictable!

Some ways people manage joint laxity is with braces, KT tape, and physical therapy. Braces come in many different forms, since I’m currently getting pretty much no treatment for my shitty joints I use mostly compression braces made for sporty people. It really is amazing how much a bit of tight fabric can do to keep my wrist in place.

More specialized braces often have solid parts to prevent the joints from hyper-extending (bending the wrong way) and causing further damage. If you ever see someone with what looks like diamond shaped rings around a bunch of their finger joints, chances are those are Ring Splints, and are there to keep the finger shaped like a finger. I want to get my hands on some and get some on my hands Very Badly, because my fingers hyper-extend SO MUCH when I type, and it makes my hand pain way way worse.

KT tape is another thing people often use. It’s stretchy tape you put on your skin and it basically functions kinda like a second ligament as well as reinforcing the joint and keeping the bones mostly where they’re supposed to be. The problem with this is a lot of people with EDS have very sensitive and fragile skin like I mentioned before, so KT tape can cause allergic reactions, chronic skin irritation, or just straight up take the skin with it when someone goes to remove it. Hence a lot of folks are really careful with it.

Physical Therapy is kinda the best (and only) treatment for joint laxity aside from Very Invasive and sometimes Highly Experimental surgery. It focuses on strengthening the muscles around the joints so they can do the work all those bone ropes made of body glue can’t. The problem is finding a physical therapist that 1) knows what EDS even is, 2) knows you have it, and 3) knows how to treat it without doing stuff that’ll Phucking Hurt You Worse!! Because exercising wrong with EDS can do Permanent Damage!!!

Again most folks use a combination of all of these things, or have next to no access to them b/c healthcare sucks.

Anyway, on to one of my favorite topics, Chronic Pain!! One of the reasons this post took me so long!!!

Chances are if your character has chronic pain as a result of their EDS there are gonna be some things they hate, including stairs, rain, thunderstorms, stairs, hills, uneven terrain, oh and did I mention stairs??? It’s going to vary person to person, but almost everyone I’ve met with pain from EDS has complained about their knees. For me the most debilitating pain is in my fingers and wrists. They’re by far my least stable joints but I use them constantly for stuff like drawing, typing, and sewing.

Because my joint pain is so wide spread, like most people’s with hEDS, it effects every single part of my day to day life. I can’t carry a heavy ceramic plate, open a bottle, or even use my computer without pain. It’s practically impossible for me to get comfortable in any position be it sitting or laying down, and as you can imagine that makes it hard to sleep a lot of the time. Moving too much hurts, but so does sitting still. I’m constantly taking braces on and off or cracking/stretching my joints so they pop back into place and hurt less.

Also being in pain makes everything else That Much Worse. I get tired way faster than I did before my pain was this bad (I had chronic pain for a while before actually realizing it wasn’t normal to not be able to walk down the block without feeling like your foot bones are trying to escape). My sensory issues and anxiety disorder are more easily aggravated because my base level of comfort is way worse. It fucks with my depression. And OH BOY does it make my ADHD worse because being in pain is fucking distracting as hell and makes it harder to make decisions and switch tasks. Also my ADHD often makes my other symptoms worse cause I forget to take my meds, don’t drink enough water, or can’t find my fucking braces because the item eating black-hole that comes with ADHD stole them. The intersection of mental and physical disabilities is probably a rant for another time though, so back to chronic pain.

Does it suck? Yes, undoubtedly. Is this incredibly debilitating? Of course it is, I spent the last several months unable to feed myself without assistance because there was a staircase between my room and the kitchen and I could only manage to climb it once a day. Is it overwhelming? Definitely, I’ve frequently broken down crying from a combination of pain and frustration because I’m having a bad day and there’s no relief to be found. Am I able to predict when it’s going to rain with uncanny accuracy because any change in barometric pressure makes me feel like every bone in my body is trying to kill it’s neighbors? You bet your fucking ass I am!! Does it sometimes make me irritable, angry, and occasionally dismissive of when abled people get cold or a temporary injury because the stuff they’re complaining about is my life every single day and all avenues of treatment and recovery I have could take years and still not entirely solve my issues? Yeah, and while I deserve a little extra patience I also have to be sure to check myself because I don’t want to turn into someone who’s nasty to be around. Do I sometimes need to sleep for 17 hours straight because it’s raining, I have migraine, and I’m in too much pain to be conscious? Yup, sometimes a few days in a row. Does living in constant pain mean I’m unable to do all the things I want to and does that sometimes make me wanna curl up in bed and never leave? Yeah, it happens.

But! And here’s the big important but, that’s not everything! I still write, draw, and talk to my friends!! It might take me a little longer but I get there. I’m still happy and excitable and make the time to write out five page long posts about EDS because it’s something I’m passionate about! My chronic pain doesn’t stop me. I refuse to let it. I never really wanted to go mountain climbing anyway, so I’m perfectly happy being able to make it up and down the six steps in my house, even if sometimes I have to sit and bump down them on my ass, or crawl up them like a cat. Chronic pain isn’t all I am. It isn’t a fate worse than death. It isn’t the only thing your character should talk about (though I do talk about my pain a lot cause I’m a complainer about almost everything). You can have your character be hindered by their pain, realistically they would be. You can have them seek comfort, support, and relief. Other characters can commiserate and be sympathetic, but it doesn’t mean their whole life is going to be one big pity party, that would be incredibly fucking boring. I know I’d be bored out of my mind.

All that said dealing with chronic pain, especially from EDS, is Complicated. Physical Therapy is the gold standard, but like I said before it can be a long and difficult process, and isn’t always accessible. Stabilization methods like I talked about before can help prevent pain, or reduce it by keeping bones mostly where they belong. Heat and cold help joints, relax muscles, and reduce inflammation but keeping them applied is rough and the relief doesn’t always last. Doctors prescribe anti-depressants, anti-anxiety, and sometimes even anti-epileptic medication to help manage pain, but everyone’s mileage with those varies. And I’m not at all qualified to talk in-depth about narcotics or other heavy duty pain-meds, but suffice to say the war on drugs fucked shit up for people that legit need that kind of help BIG TIME.

Now for my closer/bonus rant about EDS and Disability Writing in General!

Everyone always says write what you know, so if you really want to do disabled people justice, get to know disabled people! Make friends with disabled people, get involved with advocacy groups, consume content made by disabled creators both about disability and not! Disabilities are so fucking diverse, even EDS is such a complex disorder, and comes with so many potential co-morbidities, that practically everyone with it has a unique experience. There’s no way I can fully explain everything in a tumblr post. Hell, even if I could talk to you for hours probably couldn’t give you enough info to answer all your questions (especially since I’m still in diagnosis hell :,) ), so talk to a wide range of people with EDS and other disabilities!! I know it sounds like a lot of work but trust me, disabled people are some of the strongest, raddest, coolest, people you will ever meet that it won’t feel like it.

And don’t be afraid either, the fact that EDS and other disabilities are so wildly varied means that you have a little bit of wiggle room with your character’s experience. There’s so little disability rep out their I think people are WAY to scared to try their hand at writing it. So long as your character is a fully developed person in addition to being disabled, you give some logical thought as to how it would affect their life, and you don’t make their disability the butt of any joke it isn’t difficult to avoid ableist writing. PLEASE WRITE MORE DISABLED PEOPLE AND PEOPLE WITH CHRONIC PAIN/CHRONIC ILLNESS!!

Okay that’s it, again sorry it took so long for me to get back to you! My fingers were being little pests about it, and my ADHD (which is honestly more disabling than everything else a lot of the time lmao) was being an asshole! Hope this helps, and feel free to ask me more questions if you need clarification! It might take me a bit but I do love talking about this stuff.

[theos-writing]

EDS Chess headcanons

me? projecting? yes. i thought it'd be nice to bring a different type of diversity to the fandom and i can really see Chess having eds, so i thought it would be nice to come out with my hcs. slight warning, this is very long

for those who dont know: Ehlers Danlos Syndrom (EDS) is a genetic connective tissue disorder that affects collagen, that is one of the main proteins of the body and is in charge of keeping us together. there are thirteen types of EDS, but overall, the main symptoms are: joint weakness and fragility, stretchy and fragile skin, and chronic pain. people with EDS, if they do any sports, usually have a short career in them, since growth spurts or short periods of time without exercise can make them lose muscle mass easily, and in consequence, not have the compensation for their weak joints and end up feeling pain and dislocate things easily. wanna learn more go to this site (The Ehlers Danlos Society)

this is mainly based on my experiences. eds is different for each person.

Riley never did the stabby thing au

TW: addiction, injury, doctors, medicine and medical exams

Chess had a terrible balance when she was little

she was always falling and getting hurt

so her parents decided to sign her up for gymnastics when she was about four

she was really good at it

the teachers did say she had hypermobility

it wasnt a problem tho, it could even make her a better gymnast if she wanted to keep going!

at the beginning, she got hurt a lot

she twisted her ankles and complained of pain

everyone just brushed it off as growing pains and said that as she got stronger, she would get better

and she did!

for a long time, she had nearly no pain and only dislocated a couple joints

but when she was about twelve, that started getting worse

she was feeling her joints go out of place more often and she was feeling more pain

at this point, she doesnt want to tell anyone

all the pain was just growth pain, they would stop one day

until she started having this weird pain on her shoulder. it wouldnt go away, no matter how long she put ice on it or how she trained. it wasnt stopping.

she was fourteen and on the beginning of freshman year when that happened.

after a while, the pain was just a normal thing for her

it was annoying as hell and she hated it, but she wasnt going to let it stop her gymnastics

so she kept training.

but the pain started spreading. her other shoulder, her elbows and wrists

it was getting hard to write

but she could write on the computer so that didnt affect her studies

she was more concerned about gymnastics

she was amongst the top ranked on the country

even in her worst event, she was still in third place

she couldnt give up now

so she ignored the pain

until she couldnt anymore.

Chess was just practicing when she felt this massive pain shot up her shoulder

she let go of the high bar and fell

the way she landed, half on her feet, half falling down took a turn on her knee

she felt it leave the place where it was supposed to be and she screamed

her knee was nearly on the side of her leg

she panicked, not because of the pain, but because she knew what this meant: her career as a gymnast was over before it had even started

she was fifteen, a sophomore in high school, one of the youngest people recruited for the next olympics

now, all that was over

knowing that hurt more than her knee

Chess needed surgery so they could fix it

and at least four months of rehab to get it to normal use again

but as she thought, no more gymnastics. ever.

she cried for days. if she didnt have gymnastics, what did she have?

then one day, after a really bad pain crisis, she was given vicodin

it felt... good. so she accepted the next time they offered her. and whenever they would ask after, she always had pain.

it wasnt a lie. she had a lot of pain. and with weeks of bed rest, she was developing more and more pain areas. her back, her hips, her ankles, her neck, everything hurt

but she didnt need meds for it. she needed meds so she could fill up that void inside her

she recovered, partially. she still used crutches for months

finally, two months before the end of the year, she was back to walking normally and even doing p.e.

so she decided to try out for the cheer team. it wasnt gymnastics, but it was better than nothing

Kate tried out with her and also quit gymnastics for her

"a best friend wont let you suffer on your own" she said

they both got in, and when they went back to school after the summer, Chess was already fully healed

but she didnt stop with the meds

she would say she knows what happened that year but for her its all a blur her mind blocked out

she dropped Farrah, she knew that, and the younger girl hated her for it

to be honest, Chess also did. she hurt someone, even if not on purpose, she hurt someone. if Farrah landed weird she could've hurt herself as much as Chess did or even die and that would be on Chess.

so for a while she agreed to try to stop

but the pain and the withdrawals were too much

so she went back to it

until the next year. after the sleepover. after what Kate said.

and it was hard. so hard. but she made it through a day, then a week, and a month, and it got a bit easier.

the only thing that got to her was the pain. where the hell was the pain coming from

she refused to take any pain meds for it, she was scared she would slide back. she dealt with that pain for so long, it couldnt be that bad

but it was. she was starting to subluxate and dislocate things almost every week

after another scare with her knee, the school board and her parents decided it would be better if she went off the team

she was distraught again.

but now, what they wanted were answers. they went to doctor after doctor after doctor for months. no one really believed her

she researched and looked for answers on her own until she came across EDS

it sounded... like her. the pain, the dislocations, the short lived life in gymnastics, the skin that would always end up with massive scars, the hypermobility she had since a young age

she talked to her parents about that, and they agreed to take her to a geneticist

she was terrified going to that appointment

she was scared the geneticist would say what everyone else did, tell her its for attention or for the meds

but she listened. she listened while they told Chess' story and their family health history. she did a physical exam and didnt say anything until they were done talking

then she said Chess was right. she did have EDS.

Chess cried when she was told that. she finally had a diagnosis. she wasnt crazy, she wasnt faking it. she had an actual illness

it did mean she would most likely feel pain for the rest of her life, tho

but it also meant she could stop with the E.R. visits and the dirty looks from doctors and the countless blood tests and scans that got them no where

that didnt mean no scans or blood work, but those meant something. those were now to check if she was alright, not to check if she was telling the truth. and it felt so good

she told Kate right when she got home

at first she was scared, but they spent all night reading the articles Chess' doctor had sent to them and watching videos of other people with EDS, and she wasnt scared anymore. not as much anyways

[ooops-i-arted]

“Who told you that?” For the 101 AU please

Din scanned his room, making sure he hadn’t forgotten anything.  His armor was on, he’d packed extra weaponry onto the Crest, and he had extra supplies on board just in case his trip and stay on Coruscant took longer than expected.  Skywalker had promised that he’d make sure Din got anything he needed and even offered his own place for Din to stay, but even though Din respected the Jedi Master well enough by now, he still preferred to be self-reliant.

He found the Mandalorians squeaker toy Ika’ika was so fond of under his bed and tucked it into a pouch on his belt, hoping it wouldn’t make any noise at the wrong time.  All that was left was to retrieve his littlest one, and then they could depart.

The kids were outside, being entertained by Skywalker - they loved playing their sorcery games with an adult who could actively participate, not just repeat “Don’t lift me up!” - but Din had left Ika’ika in his crib because he was asleep, and needed the rest before the trip.  He walked over to the bassinet in the middle of the room.  “Ika’ika.  Are you awake?”

He looked inside.  Ika’ika was not there.

Din sighed.  Impossibly tiny, so many genetic abnormalities Din didn’t even know if he would survive another year, only started crawling a few months ago, and he was still the finest escape artist of the entire clan.

Well, at least he’d grabbed the damn squeaker.  “Ika’ika,” called Din.  “Ika’ika.  Come here.”  He squeezed the toy, which squeaked obnoxiously.  Nothing.

“Ika’ika.”  He squeaked the toy again, pacing quietly through the room.  “Ika’ika, I’ve got your favorite toy for you.”  He activated his HUD, scanning for tracks, and to his surprise saw not Ika’ika’s miniature prints, but one of the older kids’ larger footprints.

“Ika’ika?”  The tracks led to the hallway, over towards the kitchen and into one of the cabinets.  Din switched off the HUD and squeaked the toy again.  This time, a returning squeak came from the cabinet, along with a “Shh!”

Din crouched down and opened the cabinet, finding his oldest and youngest tucked among the foodstuffs.  Ika’ika squealed happily, drooling down his front and immediately reaching out for Din, but Yod’ika shrank back, clutching Ika’ika tightly in his arms.

“What are you two doing in here?” Din asked.  Yod’ika kept his mouth pressed tightly shut, clinging harder to Ika’ika, who giggled and squirmed.

“You need to be gentle with him,” Din reminded Yod’ika.  He reached out a hand.  “Give him here.”

“No!” said Yod’ika, to Din’s surprise, scooting further back into the cabinet.

“Yod’ika,” said Din, trying to sound both stern and patient.  Yod’ika was never more prone to acting out than when Din was about to leave, but much as Din wanted him to be reassured he didn’t want Yod’ika thinking that delaying the trip was acceptable.  “You know Ika’ika and I are leaving with Skywalker this morning.  You need to give him to me.”

“No!” cried Yod’ika, yanking Ika’ika away and shoving himself further back into the cabinet.  “No, I won’t let you!”

Now the light reached Yod’ika’s face and to Din’s surprise, he could see tears welling up in his son’s eyes.  “Ad’ika?  What’s wrong?”

The tears spilled all over Yod’ika’s face.  “You’re g-gonna take him a-away!” wailed Yod’ika, clutching his littlest brother close.  “Y-you’re gonna g-give him t-t-to doctors and they’re gonna keep him in a lab and - and -”  He dissolved into sobs, unable to finish.

Din was torn between concern and sheer bemusement.  “Who told you that, ad’ika?”

“I h-heard you and M-Mister Luke and M-Miss L-Leia t-talking about it!” cried Yod’ika.  “Y-You’re gonna take h-him away and leave him there!”

“Of course I wouldn’t do that,” said Din.

“Yes you would!” screamed Yod’ika.

It was like a vibroknife had gone straight through his beskar.  Of course, why would Yod’ika think otherwise?  Hadn’t he taken Yod’ika - a little, innocent child who knew nothing about bounty hunting, only a Mandalorian he already loved enough to save him from a charging mudhorn - and left him in the hands of demagolke?  Din had never figured out what had happened during those terrible few hours he’d left Yod’ika there, but the equipment he had seen and the fact that Yod’ika never, ever spoke a word about what he’d faced had been enough to convince Din it had been horrible.

Without thinking, Din scooped them both up and held them close.  Belatedly, he wondered if he’d only scared Yod’ika more, but his son clutched tightly to his jumpsuit and cried, face buried in Din’s cloak.  Ika’ika reached out for the toy that had fallen from Din’s hands, and it floated up into the air until he was able to nab it and start gnawing on it.

Din adjusted them both so he could pat Yod’ika’s back, rubbing circles on it and murmuring soothing things until finally the crying died down to sniffles, trying to think about how to explain everything to Yod’ika.  He couldn’t leave like this, not with his son sobbing and afraid for his brother.

Carefully, Din set Ika’ika in his lap, making sure he was occupied enough by the toy and trapped in Din’s legs so that the clan’s master escape artist would have trouble trying to run.  Hearing Yod’ika stop crying, he placed his eldest on his knee, wiping away tears from his face.  “Listen, ad’ika,” he said.  “I promise, I promise I won’t let anyone hurt Ika’ika.  I am not leaving him.  I am going to stay with him, and bring him back home.  I promise.”

Yod’ika sniffled hugely, swiping at his tear-streaked cheeks, looking doubtful.

Din took the corner of his cloak to wipe his son’s face some more.  “Do you remember what I told you?  About why you have all your brothers?”

“Y-yes.”  Yod’ika swallowed, scrubbing at his face, and continued, “You s-said they took my genes a long time ago, when I don’t ’member.  From my b-blood or something.  And they made lots of copies of me.”

“Yes, they cloned you,” said Din, his chest hurting.  No child should have to know this, or have it explained to them.

“B-but when they made my vode they changed my genes,” said Yod’ika.  “So they’re the same as me.  But different too.”

“Yes, that’s right.  Lots of differences, some you can see, some you can’t.”  Din scooped up Ika’ika, keeping him from crawling up Din’s leg and setting him back safely in his lap.  “Like what color your skin is.”

“’Cuz we’re all different,” said Yod’ika, nodding.  “But especially Ika’ika.”

“Yes.”  Din glanced down; Ika’ika’s almost-white skin was stark against the dark blue onesie he was wearing.  All the kids were varying shades of green from genetic manipulation, or so the files he’d stolen from Kamino said, but where the others were subtle variations, not noticeable at a glance, Ika’ika’s pale green stood out.  “Especially Ika’ika.”

Din chewed at his lip, trying to figure out how to phrase it and get Yod’ika to understand.  “It’s not just color, though,” he said.  “And not just the Kaminoans who changed the genes.  The sample from you they had… as they got older, they degraded.”

“What’s de-grade-ed mean?”

“Um…”  Din glanced around, thinking, then said, “Starting to break down.  Like my old cloak, the one with holes in it.”

“Oh.”

Yod’ika nodded thoughtfully and seemed to understand, so Din continued.  “The gene sample was breaking down when they made Ika’ika.  So his genes aren’t just different, but some of them are… not the way they’re supposed to be either.  Broken, or without the right copies he’s supposed to have.  And because of that, he’s not as healthy as he should be.”

Yod’ika’s ears drooped as he looked down at his younger brother.  “But you take care of him, Dad,” he said.  “He doesn’t need anyone else…”

“Well, I don’t know everything, ad’ika,” said Din.  He scooped up Ika’ika in a bout of need to hold the tiny precious infant; the baby rolled over in his hands and squealed in delight, unperturbed by the serious conversation his father and brother were having about him.  “I can’t do a good job taking care of him if I don’t know what he needs.”

Yod’ika leaned forward; Din tilted his hands so Yod’ika could peer at his little brother, who was now entertaining himself by grabbing Din’s fingers and trying to eat them.  “He looks fine.  And he’s happy.”

“I know,” said Din.  “And I want to keep him that way.”  He caught Ika’ika before the baby could flop right out of his hands.  “Remember he got a rash from that first kind of diaper we got him?  And how he got sick from some kinds of food?  It might get better as he gets older, or it might get worse.  If someone looks at his genes, they can maybe tell me what kind of help he needs.”

Yod’ika scowled fiercely.  “You are taking him to a doctor!  In a lab!”

“Well, her title is doctor.  And yes, she works in a lab.  But she’s a geneticist.”  Din stroked his son’s head reassuringly.  “That means she knows about genes.  She can help Ika’ika.  She’s not going to hurt him.”

Yod’ika shook his head, starting to cry again.  “You can’t take him there, Dad!  You can’t!”

“Listen to me, ad’ika.”  Din set Ika’ika down in his lap and cupped Yod’ika’s face in his hands.  “This is not like the place I took you to before.  Or the place where we found your brothers.  Master Skywalker told me this place is safe, and I believe him.  I would never take Ika’ika there if I thought he would be hurt.”

Yod’ika sniffled, glancing down at Ika’ika.  “What if it is bad?  What if they try to take him away from you?”

“Then I’ll shoot them.”

“What if there are lots and lots of bad people?  Too many for you to shoot them all?”

“Master Skywalker said he would help me.”  Din wiped a stray tear from Yod’ika’s cheek.  “He knows about how we found your brothers.  He promised he would tell me if Ika’ika felt too scared in the Force, and that we could leave any time we wanted to.”

Yod’ika scooted closer, curling up at Din’s side.  “You won’t leave Ika’ika there?  You promise?”

Din hugged him close.  “I promise. Haat, ijaa, haa’it.”

Yod’ika leaned into the hug, staying there for a long moment before he reached down and picked up Ika’ika instead.  “It’s okay, Ika’ika,” he said, clumsily rocking his brother, who giggled at the sensation.  “Dad will take care of you.”

“Is he scared?” asked Din.  Yod’ika in his oldest brothers were very good at picking up on what the babies felt, a skill he relied on frequently.

“No,” said Yod’ika.  “He likes being with you.”

“Then he’ll be happy.  Because he’s going to stay with me, no matter what,” Din told Yod’ika firmly.

Yod’ika held Ika’ika for a long moment, but then finally handed him over to Din.

[uberrapidash]

I am venting. Warning for strong language.

I'm upset because I all too frequently experience symptoms which, if present in any other more "normal," healthier person, would be considered an emergency. I don't know how to tell what is an emergency for myself, for my own body. Today, I wasn't feeling well. Took my BP, it was 89/74 -- that's a pulse pressure of 15, critically low. Pulse 144. Temperature normal (I note that because I had just gone out to run a couple errands, and it is very hot outside). I also have a pain in my left shoulder where my collarbone meets my shoulder. This pain is not new to me, it happens sometimes. (I also have musculoskeletal issues and just recently got a referral to see a geneticist to test for EDS.) In anyone else, this looks like a heart attack. But I have presented these symptoms to medical professionals before, and no one ever seems concerned about it. So what the fuck am I supposed to do? If it weren't Sunday, I would call my doctor's office. My options are to wait it out, or go to the ER, perhaps unnecessarily AGAIN (I went last month because I was having symptoms of a pulmonary embolism, but it's actually just my ribs and a winging scapula, and I went to the ER because my doctor told me to go -- I literally don't have money to pay for all this shit). I try searching online for "first aid for narrow pulse pressure," but all I get is stuff about how such a narrow pulse pressure points to shock likely due to congestive heart failure, or congestive heart failure itself, or massive blood loss due to trauma. All I did was make a short drive to a pet store then to a grocery store, in a car in which the air conditioning is working very well (it's hot out but I was barely outside), then a short drive home from there, and carried in 7lbs of cat food and my partner carried in groceries. It was less than 30 minutes, and I was sitting for most the time. And this shit happens. Meanwhile, I just cut ties with my mom because she thinks there's nothing wrong with me, and if there were then a doctor would have found it by now (completely disregarding my POTS diagnosis). She thinks I'm a 30yo failure sitting around on my ass at home all day not trying to do fucking anything with my life. So what the fuck does an actual emergency look like for my body? I feel unguided, tossed out like trash. All the years of medical appointments and I feel like I still have no answers. (Oh and also! I just recently found "somatoform disorder" in my psychiatric records!!! I am PISSED and will definitely be having a talk with them at my upcoming appointment in less than 2 weeks.) /rant I guess right now I'm just monitoring my vitals, resting, and trying to get my fluids up.

[shera-dnd]

One of the main reasons I have 0% issue having all NPC Yuan Ti being evil is that they aren't a natural race. They willingly genetically modified themselves and offer the same mods to those agents who prove most useful to them. As an artificially created self selective race whose members all ask for it kind of closes the door on them being good.

They are basically Nazi Geneticists who are actively trying to become Ubermench and they eat "genetically inferior" slaves they no longer have any use for. Their hierarchy is literally based on how good your gene mods are and earning better mods to move up in society. Like is you want a good Eugenics/Nazi villain the snake men are the way to go.

If you want a race that should be not-evil and it boils my blood that they are kobolds are the best option, because their entire beef with the "good races" is pretty dang justified. Their complaint is "dude the gnomish god stole our god's most precious treasure and locked him an inescapable maze for all of time" and the gnomes defense was "actually the gem was our god's in the first place he just stole it back, but otherwise yeah." And then everyone else took the gnomes side and the kobolds basically went "dudes wtf". It gets even more messed up when you look at the lore surrounding those gods and realize based on their personalities and domains and tenants that the kobolds most likely have the true story, that the GOD OF MINING AND GEMS found a giant magic gem and that the GOD OF ILLUSIONS AND TRICKERY stole it from him. Like holy shit people, is it because the gomes are humanoid and the kobolds are reptilian that you believed the gnomes and sided with them, even though their version is still pretty f-ed up? Because that's the only way I can see that flying.

I mean wouldn’t that make it so they weren’t a race technically? Like they’re more a collection of different people who all modded themselves in the same way and who can choose to revert it at any point in time. It’s like the vampires in brinkwood. Like their evil is an active choice instead of inherent in their species or some shit

also I literally just got another ask about the fucking kobold story and JFC what is wrong with the D&D people?

[compo67]

case of the mondays

well today was a thing

i got 4 hours of sleep because my brain would NOT shut off and stop thinking about time travel fic + physics + music

rolled out of bed early in order to maximize the day and try to reset my sleep schedule

only to find out from my mom that my dad was not feeling well and wanted to go to the ER

we live an hour away from him

so i threw a bunch of stuff/meds into my gudetama tote bag and drove like a bat out of hell

scooped up my dad, took him to the ER (because he didn’t want to call an ambulance and okay i get that but DAD)

couldn’t go in with him so i stayed in the parking lot for a while

there were some pretty trees

i got breakfast at starbucks nearby, circled back, waited more, then went to his house and nervously did things

trying to be diagnosed for MCAS is proving harder than getting my POTS dx last year and my EDS dx the year before that

but i made appointments with 2 different doctors this month so i’m somewhat hopeful. still gotta find a cardiologist

cause my geneticist is concerned about the tachy events i’ve been having that don’t 100% line up with POTS so electrophysiology cardiologist here we go

i’m concerned that another major organ might have an issue but also kinda just like whatever, throw it into the pile

sometimes i really resent this meat prison

first ER cleared my dad for a heart attack but made him wait in the waiting room for 3 hours at which point i said fuck it, just leave

so i scooped him up again, we went home, and i made many phone calls to his PCP, my PCP, urgent care, and my mom

all to determine that we’d go to a 2nd ER closer to my mom’s house that had a 30 min wait time

but then aha guess what

the oil filter in my car must have popped off because OIL LIGHT OIL LIGHT FLASHING OIL LIGHT

so we had to leave Sam at my dad’s, take his car (1999 honda accord zombie because it’s more replaced parts than OG parts)

so i drive another hour

drop him off at another ER

wait in another parking lot

go home after they give him an ER room

eat

shower

plop on the couch

eat a bit again

text my dad

try to distract myself

help my sister set things up for him to stay here tonight while my mom picked him up

sat with him on the couch as he ate dinner and henry stared at him

got him settled into bed and made plans for tomorrow

today was just

fuckin’ weird, man

i am so tired but also so awake

yet my mind is like sludge 

hopefully tomorrow i can write

in between taking care of my dad, calling cardiologists, work, and whatever else the universe wants to toss at me these days

i hope y’all are having a better start to the week than i am XD

we had an ambulance and the fire dept here last week too (everyone’s okay) so it’s like alright, 2020, i see what you’re doing

i need to figure out xmas fic ASAP

[cutmefromthelight]

Health update

Since I moved to a totally different state, I have to get all new doctors: GP, rheumy, urologist, psych, and therapist. Saw my rheumy about 2 weeks ago, and based off of my current level and extent of pain, he changed my diagnosis from ME to fibro. Different name, same symptoms, whatever. He also recommended exercise, but I've reached the point where I'm willing to try anything. Working as a high school teacher is killing me. The exhaustion is bone crushing. I'll do anything. He also recommended I try a stimulus, which he wanted to run by my new psych first. Ran it by my psych, he said he should be fine, so now I'm just waiting for my rheumy to prescribe it. I need it so bad. I love my job, but this exhaustion isn't sustainable. It feels like I'm dragging my dead, lifeless body to the end of each week. I hope it helps and th crash isn't too bad. Also, not gonna lie, I hope I get the decreased appetite side effect so I can get rid of the weight I gained from the amytryptaline last January.

He also looked at my joints, and agreed that I have hypermobility. He was somewhat alarmed when I showed him I can sublux my shoulders at will, lol. At first he thought I had EDS, but then when he saw how inflexible I am, he became very confused. He said all the people with EDS he's seen are also very flexible, but he said I could always get tested by a geneticist. It wouldn't change anything, but it would by nice to have the right name for whatever is wrong with me. Plus, I know EDSA can come with other issues, so it might explain my interstitial cystitis. We'll see.

Still waiting on my custom wheelchair. Need it so so bad

[kootenaygoon]

So,

The sky glowed light purple as Chelsea wandered down the train tracks to Red Sands. Our friendship had fizzled a bit over Christmas, while she engaged with a short-term boyfriend, but as summer approached we’d been hanging out again. She lived in a party house up in Rosemont that was covered in psychedelic paintings, and through her I’d been introduced to a local tattoo artist named Joe Nillo who specialized in avian artwork. He was in the midst of creating a trippy metaphysical version of Mother Nature, using one of her roommates as a model, and I’d written a glowing feature about him for the Star.

"There’s two quotes from that Joe Nillo story that I really love. There’s one where he compares watching Alex Grey work to ‘watching God with a sore back watering some flowers’,” I told Chelsea.

"Then the other was: ‘God made man in his image, but that doesn’t mean he looks like us and wears T-shirts. It means he’s a creator and he wants us to create.’”

Chelsea took a slug from the beer in her hand. “I like that. Except God is a she, for sure. The divine feminine giving birth to the universe.”

“I’ve always figured God would be a mix of both, like masculinity and femininity mashed together into a giant cosmic mix. Do you even believe in God?”

She shook her head. “Not God like most people understand it, but there’s definitely an energy that’s bigger than all of us. A power to the universe that’s beyond our comprehension.”

“I like that quote ‘a God comprehended is not God’.”

She turned to me, intrigued. “I’ve never heard that.”

“I picked it up in this comparative religions class in college. It’s this German hymn writer named Tersteegen. I get a kick out of that idea, that we can’t even try to wrap our heads around God, like we shouldn’t even try.”

“But we do anyways.”

“Exactly.”

As we rounded the bend towards Red Sands Chelsea was balancing on the track with her arms out, clearly tipsy. We’d been drinking for a few hours and had smoked three or four joints during that time. She always had killer weed. At least one of her roommates was a pot dealer, if not all of them, and they sustained a party lifestyle I was already too old for. At one point she lived with Blayne, who was now permanently settled out in Victoria, but now the house was occupied by her, her adorable friend Aussie Chris, and Joe’s ex Kylie.

“For me, it’s not even a choice,” she said. “I just have to create. My work just sort of flows out of me without my permission. I don’t even like thinking about a life without that creative outlet, without my writing, because it would just be empty.”

I nodded. “Plus you have that performance element. Most of my work is designed to be read in silence, but your poetry begs to be sung.”

She laughed. “I’m not singing for you tonight. Not while I’m drunk. I’d be too embarrassed.”

When we reached the opening in the forest that led to the beach, I walked in front of Chelsea so she wouldn’t slip out of her sandals as we worked our way down the slope. The horizon had darkened to a royal purple that made the ground lilac.

“So how does your friend feel about Joe spending all this time painting her? They broke up, right? Isn’t it kind of awkward he’s obsessing over an art version of her?”

“Kylie was kind of weirded out at first, but she gets it. His art is his whole life. And I think secretly she’s flattered. Even through all their fighting, he’s still spending all this time trying to get her exactly right. And I bet when he’s finished he’ll give it to her.”

“I saw the painting in his studio, with the universe growing out of her palm. Trippy shit.”

“Yeah, it’s dope. He’s been slaving over it for like a year now, adding details and layers and new elements. He works on it live at music festivals, feeding off the energy of the crowd.”

“That’s so cool. He told me he’s going to be at Kamp and Shambhala this year, and I’m going to both. I told Ed that this is the year I want to go to all the major festivals, become the resident expert.”

Chelsea took another long haul of her beer as we settled on a spot, right in the middle of the beach, to lay down a towel. This was becoming an increasingly romantic encounter and I was feeding off her flirtatious energy, even though I knew she was on the verge of road-tripping down to California for the summer. We’d established the platonic nature of our relationship many times, but tonight felt like a good opportunity to nuke that plan. I maneuvered my body under hers and she settled on my chest with her eyes heavenward.

“I heard you took naked pictures of Blayne here,” she said, after a long comfortable silence. “She showed them to my roommates.”

I took a sip of beer, not sure how to play this. “She asked me to do a photo shoot with her last year and there were just a few, yeah, that were nudes. She wanted to show off her new tattoo. I knew her from burlesque world.”

“And you guys weren’t even hooking up?”

“It wasn’t about that. It was the images I was most interested in. I feel like it’s more intimate than sex, letting someone see you like that. I actually wrote a non-fiction piece about it while I was at UBC years ago called ‘What I look like naked’.”

She rolled over, pressing her body tight to mine. She was close enough that I could smell the alcohol on her breath. “Have you done that a lot? Taken erotica shots for women?”

I shook my head. “I don’t think of them as erotica. I mean, I’ve sexted before and I’ve taken photos that are pornographic, but shoots like that are about worship. I want the women to feel worshipped. I want the images to reflect that. Reflect my obsession with the female form.”

She blinked for a long moment, her eyes in shadow.

“I hooked up with this girl in Thailand right around the end of my trip overseas a few years ago. She was a geneticist from Berkeley and she showed me these nude photos her boyfriend had taken of her in Yosemite Park,” I said.

“She took them in the exact place her mother had taken nude photos thirty years earlier. Her mother had told her that when she grew older she would want these mementos of how she looked in her prime, with the flush of youth and love. They weren’t crass or sexualized at all. They just showed this empowered girl mid-hike in love with her body and in love with life.”

“Cool.”

“I figure if that’s a gift I can give someone, then that’s pretty fucking meaningful. And honestly, those pictures of Blayne are some of the most beautiful images I’ve ever captured in my whole life.”

“I didn’t actually see them, but Kylie described them to me. She said there was one where you had her hold a little leaf to cover herself, Eve-style?”

I laughed. “Yeah, and I used the smallest leaf I could find. The whole shoot had a Garden of Eden vibe, an innocence to it. It was like going backwards in time back to Genesis, before the shame God rained down on us, and finding something pure.”

For a while we were quiet, as the wind picked up and pulled at our clothing. Chelsea kept her face against my chest, one hand stroking my ribs, as we segued back to the topic of God. I told her about my Christian upbringing, about Camp Qwanoes and how I lost my faith. I told her about how I’ve never really gotten over it.

“You’re going to find a way to believe again. I’m sure you will. I don’t know what you’re going to believe in, but you’ll find something.”

I sighed. “I hope you’re right.”

Then she was kissing me. We rolled together until I was looming over her on the blanket. She watched as I undid her jean shorts and shimmied them down her legs. Our mouths surged back and forth while my left hand stroked her legs, massaging them. I hooked her underwear with a thumb and pulled. When she began to moan moments later it sounded exactly like her singing voice, a rhythmic ululation.

“Hold on,” she said. “Hold on, hold on.”

I stopped, pulling my head back.

“I’m really into this and everything, but I can’t go there tonight. I’m sorry. My heart’s too raw, I don’t want to leave for California with any attachments, I just need to stop here, okay? Is it okay if we stop?”

I nodded. “Of course. That makes perfect sense. We’re okay.”

For the next few moments we fumbled our way through getting her clothes back on, my erection screaming disappointed. I stroked Chelsea’s hair and held her face with both hands. Sometimes I forgot she was a decade younger than me, but it was very apparent in these moments. She was a girl, open-minded but still inexperienced. I’d been consumed in the grey chaos of the Kootenays’ sexual landscape, but ordinary monogamy was the only mode she understood. It was either fall in love or don’t engage at all, which was how I used to be when I was her age. Her purity was heart-breaking.

“You’re such an awesome guy, really,” she said, apologetic. “It’s not about you.”

“Don’t say anything else about it. I understand. No worries.”

Chelsea stood up, cracked a new beer, and gazed up at the black silhouette of Elephant Mountain. She was visibly trembling. I wondered if I’d done something wrong here, if I’d fucked up our friendship irrevocably. Was everything going to be different now? It had felt right, connecting with her, but maybe I needed to fundamentally course correct how I approached relationships. I finished my beer, threw it down, then walked over to embrace her from behind. She sighed into my hug, pressing her face against mine. Then she turned to face me.

“One day I want you to take my picture.”

The Kootenay Goon

[rainbowchihuahuabunny]

Tips and tricks for fellow Zebras

Link to website I copied this from below list. I own none of this.

1.) Confirm with a knowledgeable geneticist that you have EDS. If you get the feeling they do not understand or believe you have EDS, then go to another geneticist. I met with three before I was convinced and accepted the diagnosis.

Feel free to use our list of compatible geneticists.

2.)Take Time to Grieve – It’s okay and necessary to allow yourself to mourn the loss of your past life.  Life will move on, but it will never be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on, live with hope and try to be proactive.

3.) Address pain control – You will need to accept that you can not take this journey on your own. You need to address your pain in order to have the opportunity to attempt to regain some sense of normalcy in life again. You might be like many of us and have trouble metabolizing certain medications.

Many EDS patients respond beautifully to medical cannabis. It can be taken in a simple dose of oil at night, that not only allows you to sleep but also provides pain relief to the body well into the next day.

Here is the recipe I use to make the oil.

4.) Be evaluated and followed by an EDS friendly neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck. Since this is very important for your safety, every EDS’er should have this evaluation done and be sure to have the neurologist monitor you.

Many of us need to have the tethered cord released to address issues with the bladder, kidneys, pressure in the chest, and issues with legs. If needed, have the tethered cord surgery as soon as possible for not only will you feel much better but it will prevent permanent damage. Also, any physical therapy you undergo after surgery will prove to now progress much more effectively and quickly.

Instability of the neck will cause havoc with your body. It is worth trying strengthening, but if this does not resolve the issue, then consider the surgery. Having my neck fused has been a lifeline for me. It has tremendously reduced brain fog, imbalance, headaches and constant painful neck subluxations.

Chiari I Malformation must also be addressed. Severe headaches are not a positive way to live, so please have yourself examined by a neurologist that understands this condition.

Any or all of these may be an issue for you in time, but please understand that correcting them, when the time is right, will make the difference in your efforts to progress.

Feel free to refer to the list of neurologists on our list.

5.) Find a good manual sacral physical therapist – “Living Life to the Fullest With Ehlers-Danlos Syndrome” is a book written by my manual sacral physical therapist, Kevin Muldowney. He learned by working with many EDS patients at his clinic, that there are safe ways to strengthen our muscles. I have been through the protocols highlighted in his book and have found that they work for me. You’ll need to remain committed to the daily workout, but believe me, I love being proactive and thus, I  so appreciate the progress which is so evident to me – like having the scarum hold! This is your opportunity to take better control of your life by learning, through the guidance of this book and along  with a manual sacral physical therapist, how to successfully help strengthen your muscles which have the additional task of holding your body together.

6.) Develop a network of doctors that understand EDS or are willing to get educated – Feel free to visit my website to see if a doctor is listed near you. Also feel free to contact us if you have a good doctor that we can add to the list.

Remember, we are complicated and given current treatment options complete recovery is not an option. That is a lot for a doctor to want to take on. Be patient and look for compatible personalities and let them learn through you.

7.) Be sure to have a cardiologist – You should have an echocardiogram (echo test) done yearly. The test uses sound waves to produce images of the heart and allows the cardiologist to see if your heart is beating and pumping blood correctly. Many of us develop POTS or dysautonomia and eventually need the care of  a cardiologist to help us take the compatible medication to keep our BP elevated, to prevent passing out.

8.) Determine food allergies – A simple food sensitivity blood test can offer tremendous assistance in reducing reactions and inflammation. By getting these foods identified and eliminating them in your diet, you will in turn decrease inflammation in the body the helps to cause your subluxations. It can initially be heartbreaking to learn a wonderful food you love is on your list, but many times, if you avoid that item for three months, you may be able to successfully reintroduced it to the body.  As difficult as it is eliminating foods, you will find a huge difference in how much better you will feel. There are numerous tests to use but the one I happen to use is called MRT Food Sensitivity Testing.

9.) Determine Drug sensitivities – I wish that years ago I had a clue that there was testing available to see why I had such negative reactions to many medications since birth. A simple DNA drug sensitivity test can help determine what is a safe drug  you should be able to put into your body. If you keep taking medication or eating foods that are not compatible with your body chemistry then you are increasing the inflammation in your system. More inflammation means more pain due to the increase of subluxations! I happened to use Genelex DNA Sensitivity testing. You then have these results to use for the rest of your life – anytime you need to add a new medication, you can determine from your testing whether it will be compatible or not. I contact the testing company to have them check my results to be sure I am safe adding anything new.

10.) Cusack Protocol – I had read about this supplemental protocol. I had no intent to add anything else to have to take but then heard more and more EDS’ers rave about the results. So a year ago, I bit the bullet and started introducing one item at a time to see if I could feel positive results eliminate too. To my amazement, I believe my joints are holding better in place, I am strengthening more successfully and feeling a nice improvement in my health and overall attitude. I found it took a few months for these results to begin to kick in. I have always believed that if something might help me and not hurt me, it was worth a try. This protocol is staying on my to do list and I would highly encourage you to consider trying to add these supplements to your life. Although I am not able to drive, I can order all I need on Amazon!

http://arthritis.talksmedicine.com/welcome-new-members-to-view-the-cusack-protocol-chart-select-the-pinned-post-379602]

11.) Exercise Safely – When you live with chronic pain, you get emotionally and physically worn down and sometimes feel that you have no energy to exercise. However, living with EDS makes it all the more important to do just that. We need to keep our muscles strong and be sure to get a cardio workout to keep our bodies in the best shape as possible. Along with following my daily exercises following the Muldowney protocol, I also add either walking, when the body allows, a stationary bike or have myself hoyeried into the pool. I can’t do stairs presently so this gets me in and out of the water safely and then I kick on my back and/or use a snorkel and kick on my stomach. I had been a master swimmer and didn’t want to give up exercising in the water, my love, despite no longer being able to use my arms or neck with swimming. There are frequent times I have to stop or back up a workout due to subluxations that have had to get corrected and might need time to reduce inflammation before returning to my routine.

12.) Try to not get Isolated – I have found, especially when recovering from surgeries, my contacts in life become very limited. And, due to living with chronic pain and continual issues that arise, it is hard for others to understand that we still need friends. However, many of us have experienced our friendships diminishing due to either being judged that we look fine or just not being able to keep up with activities with our friends. So we have to look for new ways to stay connected and not feel isolated. So, see if you can attempt to locate a local support group, use an online support group or reach out to others that are also trying to learn to cope with chronic issues. Simple acts like visiting a rehab center or nursing home and reaching out to others also struggling helps to put your life into a better perspective.

13.) Candida tendency – We tend to be more sensitivity to candida, the yeast we all have naturally in our bodies. Sugars and carbs feed this condition and cause it to get out of control causing brain fog, fatigue, and weight gain, despite almost starving yourself. This was one of the fist symptoms I developed early on in life. For me, it takes a round of  Nystatin to rid my body of the issue and then lightening up on the triggers that feed it. I usually feel relief within twenty-four hours when I take the medication to kill the yeast.

14.) Taking care of your Gut – Many of us have issues with stomach aches and bowels that can literally shut down. Some deal with gastroparesis and others like me with motility issues. Many of the stomach issues are improved by addressing both the food and drug sensitivities. I had no movement of my gut for two years after my first neck surgery. The interesting thing is when I came down with congestion from a cold this past Fall, I turned to alfalfa tablets, per a homeopathic doctor,  to dry up the congestion since I am unable to metabolize decongestants. Strangely and thrillingly, I suddenly found the gut woke up and has been eliminating daily. I have stayed on the daily use of the alfala to keep this process in action and am thrilled!

15.) Control Low Blood Pressure – Many of us live with lower blood pressure than normal. There are a few things that I have found to be very helpful for this:

Drink plenty of water.

Elevate your bed from the bottom of the frame at your head, 30 degrees.

Salt your food – and use the best salt you can get like REAL Salt that includes wonderful minerals too.

Don’t get to the point of passing out and doing damage. If you feel the above is not working, then see your cardiologist to consider adding medication like Midodrine. I find if I stick with my three doses a day, my BP stays at a safe level.

16.) MAST Cell – This is defined as a cell filled with basophil granules, found in numbers in connective tissue and releasing histamine and other substances during inflammatory and allergic reactions. Those that suffer with these reactions often struggle tremendously. Be sure to bring this condition up to your doctors if you feel you are not reacting normally to foods and life around you. I have not had this issue so don’t want to address this incorrectly and encourage you to talk about this if you are reacting abnormally.

17.) Orthopedic issues – If you develop issues with bones subluxing and strengthening seems to not be helping and there is talk of surgery, please be sure they use cadaver tendons to hold the bones in position, not yours! Remember your ligaments and tendons are not able to do their job properly due to this condition. And also consider using arch supports since many of us deal with flat feet.

18.) Prolotherapy/Vector Machine –

I always have turned to prolotherapy,also know as Non-Surgical Ligament and Tendon Reconstruction and Regenerative Joint Injection, is a recognized orthopedic procedure that stimulates the body’s healing processes to strengthen and repair injured and painful joints and connective tissue. I try this before making the decision to go for surgery. It is safe and can be effective, depending on the damage to your body. If it doesn’t work, then I move on to the surgery.

The vector therapy system is indicated in the US for the treatment of chronic, intractable pain and for the treatment of post-surgical trauma pain. When I tired one treatment for the first time with the machine a number of years ago, I had to immediately reduce my medication for pain for the treatment had rapidly reduced my pain levels.

19.) Low Dose Naltrexone – Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome.  LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. I again did not take the original suggestion to try this medication just because I hated to have to pay for one more thing along with adding to my list of medications. But after hearing the positive results of others with EDS trying this, I broke down and am thrilled I did. I feel that is helps me to maintain a more positive attitude, more pain reduction and functioning in general. Another keeper for me!

20.) General Safe Movement of Body –

A simple thing to always remember to prevent up-slips, is to never sit in a chair or in the car and reach down, leaning to your side, to pick something up. That will easily slip you out of position. Either sift your body to the direction you need to pick up something and then lean forward to get out of the chair and bend your knees to bend down.

Always lean down to the ground by bending your knees, not twisting to the side, to help keep your sacrum in position.

Try to get into and out of a car that you don’t have to lift your butt up high or sink down into the seat to try holding your sacrum in place.

21. Lifting Objects – It is helpful to limit your lifting and weight of objects to help prevent subluxations of your arms and ribs. Try to use a fanny pack to carry items instead of putting a shoulder bag on or carrying something in your hands pulling your arms downward. If you can possibly limit lifting no more than five pounds, it is safer for your body. You don’t want to pull and stretch those ligaments and tendons already compromised.

22.) Pillow – Many deal with issues with the neck. The Therapeutica pillow keeps the head in position during sleep to prevent the subluxations that can occur with innocent movement during sleeping.

If any of y'all have anything else to add or helpful tips and tricks you've found please add them!

[christianspoonie]

Confession: I see too many people claiming hEDS (hyper mobile EDS) and it annoys me. Doctors are misdiagnosing flexibility, because they haven't heard of the criteria (because its a rare thing). I don't get why people convince themselves its EDS. I see this on chronic instagram accounts a lot. "I can do the splits so i have a rare connective tissue disorder!" That's not how this works!!

I said I’d give a confession back. This is probably the most personal thing I’ve ever posted lol.   This may be an awkward time to say it  again but I do have hEDS and it affects my life more than any other condition I have. I’d be wary of any diagnosis not given by a specialist. I mean I literally only got my diagnosis at 13 because a new doctor I just met looked me in the eyes and told me “You don’t have Fibromyalgia, Arthritis, or any other chronic pain disorder. *insert childrens hospital name here* lied to you to sell you drugs. You’re just so mentally ill you believe it and your parents are ignorant for believing it too. I’ll send you to where I went as a student *insert bigger childrens hospital name here* and have THEM decide. I know I’m right.”  And then we went and I got diagnosed again by 9/10 specialists for JIA and 10/10 specialists for Fibro and then 10/10 specialists for hEDS(which was called EDS type 3 at the time) and I didn’t even know what it was. I was told I was one of the most hypermobile patients they’ve seen and they are the only hospital with connective tissue disorder specialists around this area of the country(which is why I still go there). 

 We filed a formal complaint against the doctor who sent us there and the hospital’s own specialists did as well. Then later by the Geneticist all of these were confirmed again and I also was diagnosed with POTS and Mast Cell Activation Disorder. Even with getting a diagnosis I still have issues with certain doctors who aren’t educated on it trying to tell me hEDS isn’t a big deal and all gymnasts and cheerleaders have it(which is incredibly stupid to believe). Where I live the doctors and nurses in the ER only know about hEDS because of how often I’ve been in there for that or my other conditions and many have told me that. When I was still in school that was a constant battle and we had to get advocacy groups involved many times. 

 However, I do think hEDS may be more common than we’re lead to believe so it would be a bad idea to assume everyone who says they have it is faking. For example where I live there is this one woman a little older than me who had never heard of hEDS until I needed help in a store she worked at years ago. A couple months later all of a sudden she has hEDS! She’s still working at the store, she still walks all around town, she has a fake service dog(which you can tell because it wasn’t trained at all), I think she’s faking. Whenever I see her I got angry because, how dare she act like she has hEDS! I couldn’t even go to high school like a normal person and had to do it all from home and here she is begging people to help her with her finances when she is able to work? No one around here ever heard of hEDS when I was first diagnosed, I never got help, I had to fight for myself constantly and, here’s this one woman who gets everything handed to her on a silver platter no questions asked??? I never confronted her and I never posted about her on Facebook(where she asked for help). Years go by of me passively hating this woman I didn’t even know because I thought she was making the REAL people with hEDS look bad and I was jealous of how healthy she seemed. Eventually it turns out, she does have hEDS. She went to doctors after hearing me talk about hEDS that day and eventually went to the same hospital I do and got diagnosed. It may not affect her like it does me but, she still has it. In some ways it is affecting her worse than it has me. The reason she was asking for help for so long was because she genuinely needed it since working was becoming so hard for her. There was no excuse for the fake service dog but, after that I’m not so quick to judge people based on my own experience with the condition. The day I found out the truth I cried my eyes out and begged God to forgive me for the hatred I had towards her and for Him to heal her.

What would solve the problem of fakes easier and solve the problem of people not believing the real people with any type of EDS would be education. Doctors, Specialists, Nurses, etc. all need to be more educated on EDS. Not only them but, the public needs to be more aware of our conditions and the struggles we face because of it. Out of every “fake” out there there are probably way more people who do have it and either don’t know or just found out and aren’t educated about it yet. Even if you think they are faking please be kind who knows, even if they don’t end up having hEDS they might have something else that needs diagnosed. Even if they don’t have anything physically wrong with them, treat them the way Jesus would. 

[thanakite]

Wow, I really need to like document the medical bullshitery I just went through because it was really fucking something

So, I’ve been working actively towards an EDS diagnosis for a little bit now, the doctor/PA who is now acting as a launch pad for me doing so has already made this incredibly difficult. See, they sent me a referral to a geneticist over the summer (About 4 months ago now), because of the limited number of geneticists there are though, I’ve been on a waitlist to be contacted once they have the ability to take me on a new patient which means that at this rate I likely won’t get an appointment with them until 2024

Since I am in severe chronic pain all the time, this isn’t really great to me and as a result I have pushed their referral staff a number of times about the issue, to determine if someone else can see me and diagnosis in the meantime (I regularly asked about rheumatologists/Joint specialists since there are more and since I likely have the general form of EDS that can’t be detected through blood testing yet which means I really don’t need a geneticist, but they kept either ignoring me/blowing me off or literally stated “Well you tested negative for rheumatoid arthritis and so a rheumatologist won’t see you,” like yes -_- I wouldn’t test positive for rheumatoid arthritis if it is EDS and they are still the doctors who specialize in joints so I don’t know what to tell you), the 1 place they pulled up (after I firmly stated that it needed to be someone covered by Medicaid since that is my insurance and because Medicaid doesn’t like people paying out of pocket for things and that they needed to be able to see me sooner than the geneticist they already referred me to) was a place with a waiting all the way into 2024 already and not only DOES NOT take Medicaid, but doesn’t take ANY insurances

Like, no, that isn’t what I asked for at all -_-

So, I’m like “Obviously this didn’t fit the criteria, again who can I see that can see me sooner and is covered by my insurance?”

To which they replied that I can call my insurance and figure it out and let them know, otherwise I should wait for the geneticist they already sent a referral to (Like bro, isn’t this supposed to be your job? To determine which doctors I can see for my problem that are covered by my insurance? Like what?”)

Anyway, I ended up calling the Nurse Advice line through Medicaid since my doctors wouldn’t even confirm for me that I can see a rheumatologist instead of a geneticist. They of course confirmed that duh, of course a rheumatologist should be involved (gasp! Who knew! -_-) They were very kind and helpful and sent me the information on a few rheumatologists covered by Medicaid and everything that I could potentially see

Of those listed most are a 40+ minute drive from where I live which is not easy or helpful in a lot of ways and so I pulled up the info on the closest place, a Kaiser Permanente

At the suggestion of the Nurse line, before I gave their info to my doctor’s office to send a referral I called to confirm that they are accepting new patients and are covered by Medicaid, which the person who answered the phone confirmed was the case but they needed to be sent a referral

I had of course assumed that already but was glad they would apparently be able to see me, and thus sent the info on the place over to my doctor’s office so the referral could be sent over, and as is standard then gave it about a week to hear back from them

Which leads us to the shit show that was today

I call and connect to the appointment line, she asks for a patient number and I explain I don’t have one as I would be a new patient and that my doctor sent over the referral. She tries to bring me up and when that fails she says she’s sending me to Member services and instead kicks me to the main menu again

Okay, so I follow steps to talk to someone in service and get on the phone there. I start to explain that my doctor sent over a referral and that I’m trying to be seen by a specialist. She tries to immediately kick me back to the appointments line and I have to rapidly explain that appointments sent me to them. I explain that I am with Medicaid and that they are supposed to be covered by that and how I’m trying to see a rheumatologist suggested by Medicaid to me

She understands and confirms that I just want to see a specialist not go to one of their primary providers but assures that should be find, but that she needs to set up a semi-profile for me and then explain it to the appointment people. I’m put on hold, she checks back and says she’s still explaining it, and then suddenly without warning I am transferred to someone in appointments who was not explained everything first. She tries to transfer me to Member Services but I explain how I was just transferred to them by Member Services who was supposed to set things up and then explain it to appointments

She looks around the system and can’t find the semi-profile that should have been made and eventually kicks me over to another form of help desk. I explain the situation to this guy and he looks through so stuff and comes back with this:

My Colorado Medicaid does cover Kaiser Permanente but I need to set them up as my primary first by calling the Medicaid people and having them set that up, then I’m supposed to be sent a Kaiser Permanente member card, then from there I am supposed to go see one of THEIR primary care providers and then from THERE I can go to the specialist I was referred to, but I cannot see a Kaiser Permanente specialist unless I am also a member and seen by one of their primary care providers

What a fucking shit show

Like doctors are supposed to be managing these things to avoid this bullshit, because I am sure that DOCTORS know that you can’t see Kaiser Permanente specialists without seeing their primary care providers too, but like let’s sum this up to really get how bullshitty this whole mess is

My doctor told me to ask my insurance who to send me to -> My insurance (Who has my information on who I am and am not connected with) tells me I can go to Kaiser Permanente -> I CALL Kaiser Permanente and they confirm they can see me they just need a referral -> I let my doctor’s office know and they send a referral to Kaiser Permanente -> I give Kaiser Permanente a week to process the referral and then call back to schedule my appointment -> Appointments sends me to Member services -> Member services sends me to appointments -> Appointments sends me to advanced help -> Advanced help determines that insurance needs to connect to Kaiser Permanente and once connected I need to see a primary care provider with Kaiser Permanente before I see my specialist

Like WHAT?!?!? Insurance and my doctor’s office and YOU Kaiser Permanente all confirmed that I can see you through Medicaid and see JUST the specialist and NOW after WASTING yet ANOTHER week of my time (Time I spend in agony due to my chronic pain that we are fucking trying to diagnose here!) you are telling me I need to do a long, complicated, BUSY (Because, right, the guy added that getting the connection between Medicaid and Kaiser Permanente can be difficult and take several FULL DAY tries to accomplish and then trying to get a new patient appointment can also take a decent amount of time too!) process AND see one of your GENERAL providers before we can even START to look at the thing I am trying to be referred to you for

WHAT A FUCKING SHIT SHOW!

This is why medical care is broken, literally so many people could have prevented this from being a problem along the way and yet none of them did and I was the one who wasted even more time, time I spend in constant severe pain that no one but me seems to care about, time that I will continue to have to spend in pain as I try to figure out what my next steps should be, because at this point I’m pretty fucking fed up and I am also aware that if I connect to Kaiser Permanente I could have to start COMPLETELY from scratch in addition to the amount of time I will have to spend just getting connected FIRST

There isn’t enough patience you can be granted in the world to deal with this nightmare

[strangerdarkerbetter]

sorry if you've answered this before, but do you know what effect an EDS diagnosis would have on your insurance coverage in the US? my rheum said I could see a geneticist about it but also don't wanna lose my insurance. I'm just worried about vEDS cause I have a family history of heart disease and have had family members have sudden heart attacks

Assuming you’re in the US, it shouldn’t have an effect on your insurance coverage, at least, for now. 

One of the major triumphs of Obamacare (the ACA) was that it made it so insurance carriers could no longer deny people on the basis of pre-existing conditions. 

Unfortunately, with the current state of politics, it’s really hard to say whether or not this will still be the case in the coming years. Republicans have been trying to dismantle the ACA which could mean that this will be repealed. 

However, for now, you are protected and cannot be kicked off your insurance or denied new coverage if you get a diagnosis. 

While there could potentially be risks down the line, I think it would probably be a good idea to be tested, especially since there are concerns of vEDS. 

-Sabrina