#ehlersdanlos
I had the incredible pleasure of getting to visit and chat with @toitroutman for a little while last week. This woman is a badass who’s been living with #lupus for decades, and told me a lot about her recent admits. Swapping stories about hospitalists and the confusion that comes with the gap between how we look and how our bodies behave felt like a deep exhale. Sometimes there’s nothing more healing than community. #HospitalGlam
[#imagedescription: a shot of Toi and I standing next to her hospital bed, taken by her son. Toi is in the foreground, showing me how to work some tech offscreen, and I’m standing behind her watching and smiling, because this is also part of illness]
#invisibleillness #chronicillness #invisibledisabilities #disabled #ehlersdanlos #tbt
https://www.instagram.com/p/BpSJrIZHlLU/?utm_source=ig_tumblr_share&igshid=1tndg1tmfscj0
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Like @annieelainey & @michelle_roger said, #AmbulatoryWheelchairUsersExist. My joints sublux dozens of times an hour, so I use a combination of braces, mobility aids, and when someone is available to help me out, I use a wheelchair. When traveling or going long distances I’m usually in one. It’s a necessary part of independence for someone whose mobility fluctuates. [This photo with @valeriebjarrett was taken during the tail end of the 2016 Women’s History Month event at the White House. It was an incredible day that I’m so fortunate to have experienced!]
#invisibledisabilities #ehlersdanlos #invisibleillness #tbt (at The Obama White House)
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Each interaction I have with a doctor bridges a gap between our knowledge of my body. Every interaction I have with another sick person bridges a gap in our understanding of disability and what is in our power. #HospitalGlam
[#imagedescription: I’m in black, at the foot of a doctor’s bed. I do not appear ill.]
#invisibleillness #invisibledisability #ehlersdanlos
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Reminder: I’m posting older work at @dunlop_art_gallery all week as part of their #URLIRLyqr exhibit.
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Examined or Seen
#HospitalGlam
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#invisibleillness #disability #ehlersdanlos #dysautonomia #chronicpain
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#hospitalglam in a late night at Mount Sinai - Abandoned hospital corridors at 1am are surreal and eerie while code calls shatter the stillness.
Hospitals here run their MRI/CTs 24/7 to get maximum number of patients through. They run all night, banging and chirping away.
My tech was very experienced and kind, and knew about EDS, which is a first. This is my sixth MRI. It was a long one, well over an hour, multiple series of pelvic vascular and neural, an endurance test of overload.
They are so loud, if you have neuropathy it’s like being in a slow motion crash and staying still is excruciating. The position meant I lost all feeling in my hands and my leg but it was the fastest way to do it.
Tech let me curl up in a ball after for about ten minutes and gave me lots of time to reorient and get feeling back.
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I continue to practice #HospitalGlam at every visit and procedure because my relationship with my body, each clinical space, and each doctor, nurse, or technician evolves as I keep going. We have new conversations, not only about my health, but about the relationships between care providers and patients, what is observable, and how we can be seen. Every discussion is different, even with doctors I’ve now known for years. The process is more revealing than the photos, and is another intimacy shared with the people in those rooms. It is work, for all of us, and it pushes our understanding further. /////
[#imagedescription: I am seated sideways on a clinician’s gurney positioned upright, stretching a leg off the side while the other is tucked under my body, twisting at the waist, chest open to the camera, arms wide. In a magazine rack on the wall behind me, there is a title labeled”Living”]
#disability #chronicillness #ehlersdanlos #invisibleillness #process #artistsoninstagram #invisibledisability
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Guys, gals, and non-binary pals, I am struggling. I didn’t sleep for two weeks straight, I am behind on school work and college applications, my chronic pain has been hellish, and I am just overall exhausted mentally and physically. My friends and family are there for me, but they don’t have any clue what I go through. So I am coming to you all. Please just either respond to this or message me with some words of encouragement. I am a senior in high school, so this is an extremely busy time for me. But I just want to lay in bed and stare at a screen.
Reminder!!!
It’s getting to be that time of year where sickness is rampant. If you have a friend or acquaintance with health issues - particularly a weak or compromised immune system: ALWAYS check in with them before meeting up if you’re feeling sick, even if it’s just a tickle in the back of your throat!
(The last time I was around a friend that was sick I got a cold that lasted for 3 months and a chronic infection from it)
When I get sick I get SICK. And antibiotics completely DESTROY my digestive system. When I was on antibiotics last year I couldn’t keep anything down (not even water) for an entire week! I ended up being in the hospital for four days. And this happens every time I get bronchitis/pneumonia. So if you even have the slightest flu symptom STAY THE HELL AWAY. Thank you!!
Hi guys! I just submitted an essay for a scholarship for college. To have a chance at winning I need to receive votes for my essay. Because of my Ehlers Danlos Syndrome I reeeallly do not want to take out student loans in case I end up not being able to work, for if that happens I would never pay them off. It’d mean to world to me if you all repost this and possibly vote for me. The essay is about me wanting to become a doctor. Thank you!!
Here is the link to my essay: http://www.wyzant.com/scholarships/voting/154497
Unrest movie is a brilliant documentary about chronic fatigue syndrome
I’m so glad chronic fatigue syndrome is getting recognition in media.
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Today I was walking by a group of people and I hear “why does that girl walk so weird?” At first I wasn’t bothered; I do walk abnormally due to my Ehlers Danlos Syndrome, and people often question it. However, as I walked by again I notice a girl look me up and down and sneer. I asked if she was the girl who commented on my walking and she said she was. I proceeded to tell her that “I have a condition that makes me walk like this. It’s debilitating and deadly so I’d appreciate it if you didn’t make fun of it.” Then with the utmost sarcasm she goes “oh do you? I’m so sorry.” I was shocked. Normally when I tell people I do things weirdly because I’m sick they get quiet, apologize, etc. But this girl literally did not care. Now at this point I was very angry and I told her to shove her sarcasm up her ass. (Yes this was wrong I shouldn’t have said anything I know). Then with more sarcasm she goes “oh I’m gonna go cry” and I told her “good your tears will wipe off your ugly makeup.” Now I started to think clearly and decided I had to get away because honestly she could have like punched me or something and my body is way too weak for that. Anyway the moral of the story is please don’t comment on things that people can’t change. Whether it’s height, acne, skin color, etc. I acted tough to her face, but after walking away I proceeded to go into a bathroom stall and cry. If someone tells you something personal about themselves and makes themselves completely vulnerable, then don’t stomp on that. For anyone reading this, please be a little kinder today. Compliment someone on their outfit. Hold the door open for a stranger. The world is filled with too much negativity. Let’s spread some joy.
For anyone wondering, the girl was immediately removed from campus and expelled.
Hi yes please don’t play “Pain Olympics”. Everyone’s pain is valid!! Your headache, backache, or sore throat are just as valid as my chronic pain. Yeah overall my pain is a lot worse, but it’s all relative. A backache could be the worst pain someone has experienced you know? That is all thank you
everything that chronically ill and disabled people might need to make life a little easier-
health and beauty-
- iHerb - reasonably priced herbs, supplements, vitamins, food, and beauty products - ships worldwide
-Skin Deep - tells you what’s in virtually every cosmetic product ever, and how harmful/safe the ingredients are
entertainment/education-
-JustWatch - tells you where to stream or watch any movie or TV show - worldwide
-sporcle - thousands of quizzes and games
-quora - interesting question/answer site
-duolingo - learn a new language in a simplified way
-whatismymovie? - tell it what you feel like watching, it’ll suggest a film
-Tastedive - tell it music, movies, TV shows, books, etc, you like, it’ll suggest similar ones
food-
-Green Chef - meal delivery kits - US only
-Blue Apron - meal delivery kits - US only
-seamless - food delivery - US only
-FoodByUs - homemade food delivery, kind of like Etsy for food - Australia only
-menulog - food delivery - Australia only
-Marley Spoon - meal delivery kits - Australia only
-SuperCook - type in the ingredients you have, it spits out a recipe
shopping-
-Catch - online discount shopping, including grocery items - Australia only
-livingsocial - discounted vouchers for restaurants, experiences, holidays, health and beauty, etc - worldwide
-Groupon - discounted vouchers for restaurants, experiences, holidays, health and beauty, etc - Australia and US
-Scoopon - discounted vouchers for restaurants, experiences, holidays, health and beauty, etc - Australia only
-RetailMeNot - vouchers, coupons, deals and sales for virtually every retail website - worldwide
-GoodGuide - links you to the most/least ethical/safe products - worldwide (i think)
I haven’t had a chance to check these out, so I apologize for any broken links or sucky websites. These resources sound amazing though!!
Life Update #2
(I’m not even sure if anyone reads these, and that’s okay because I partly use this blog as like a diary in a way idk)
I’ve decided to divide this update into three sections to organize my thoughts and make this flow better.
Physically: The past few weeks my chronic pain hasn’t been nearly as bad as usual. For about a year straight I had this chronic butt pain (I know that sounds weird; the pain was near my sitting bones so not exactly my butt). It was to the point where I couldn’t sit, lay on my back, or lay on either side without being in excruciating pain. Like words can’t describe how bad it was. I had an MRI done and it was normal, but my doctors could tell I wasn’t exaggerating the pain, so they recommended physical therapy three days a week. However the closest one my insurance would approve is like an hour away and I simply couldn’t make that trip three days a week. Luckily I’ve discovered some things I can do to prevent the pain (certain stretches, walking around after sitting, changing sleeping positions, etc).Now that this pain is pretty diminished I’ve been doing a LOT better. On the downside, my digestive system is completely throwing me for a loop and my dysautonmia has been pretty bad. My cardiologist increased the dosage of my beta blocker though and I’m noticing an improvement. As for the digestive system issues I’m figuring out what foods I can and can’t eat and I’m doing better.
Mentally: My mental health has been a little up and down. Back in like late September early October I just couldn’t bring myself to do anything. I have the tendency to shut down when I’m overwhelmed, so I think that’s what was going on. I also found out I was deficient in B vitamins, which definitely could’ve played a role. Then I had a few really great days and accomplished a LOOOT of stuff that I had to get done. After that though I started to feel bad again. It’s like some weird cycle I’m going through. I guess that’s normal though- we all have good days and bad days. I think I do better when I give myself “tough love” and force myself to do something. Like I’ll force myself to shower or go hang out with friends, and I feel a lot better and get more done. It’s like I gotta force myself to break the cycle.
Personal Life (ie school): For those of you who don’t know I’m currently a senior. My course load is pretty simple this semester (AP English lit, AP government, dual enrollment human biology, and physics because my school doesn’t have ap or honors physics for some reason.) I’m glad my courseload isn’t too bad because of college applications, scholarships, and SAT prep. I’m taking the SAT one more time in November because I wanted to improve my score. So far I’ve applied to like ten scholarships so that’s good!! Honestly my main focus is my college applications. I’m applying to UCI, UCR, UCLA, UCSD, USC, Pepperdine, Yale, and Brown. Obviously the ivys are reaches but you never know!! USC is my dream though. I’m planning on majoring in biology (or something similar like human biology, biology with focus on medicine, etc depending on the college), and becoming pre-med. I know you probably think I’m wild to go into medicine with all my health problems, but it’s my dream man!! And in the twelve years of schooling/residency a cure or something might come out and I’ll be great! Or even if one doesn’t come out I can still try. I’d rather try and fail then never try at all (hence my applying to Yale and Brown).
Last week, my friend Heather Albright, pictured above with her son Jared, passed away as a result of Vascular Ehlers-Danlos Syndrome (VEDS).
While her life was way too short, it could have been much shorter. Most people with VEDS don’t know they have it until they’ve experienced a fatal or life threatening event. The vast majority of patients have never heard of VEDS before they’re diagnosed, and by then it is usually too late.
Please consider reading this and reposting. There is no cure, but early intervention can drastically prolong lives.
If you suspect you have VEDS, contact your doctor immediately. Print out these pages and keep them on hand just in case while you wait for a proper diagnosis:
Ritter Rules (Everyone with EDS should have this information with them, but it’s particularly important for people with VEDS)
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The reasons for why the wonderful okapi has been chosen as the new mascot for HSD/hEDS!! Chosen by us, for us. Let’s reclaim our stripes!!
Repost @perpetual.reflections
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THE EDS/HSD OKAPI. .
Related to the giraffe (which is the symbol of marfans), the OKAPI is a unique creature that has zebra stripes, hooves, and is very similar to a deer. Theres the common look of the deer. But the rare pieces of the zebra. Sort of like EDS with its mixed bag of subtypes. those who have adopted the zebra stripes into their lives are still sporting a positive symbol, Rather than a reminder of the toxicity. .
Please share this to show support and tell the ehlers danlos society that they do NOT speak for us, as they do not look out for our best interests. .
#okapistrong #screwthezebra #zebrastrong #medicalzebra #ehlersdanlos #ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #eds #ehlersdanlossociety
https://www.instagram.com/p/B40FjZopgJx/?igshid=xks98n1xlchs
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#okapistrong
#Repost @perpetual.reflections
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I no longer support the ehlers danlos society. A few reasons are featured in these images from @hell.on.wheelsxx and @livs.journal but more info is in @hell.on.wheelsxx ’s blog post which I’ve linked in my bio!!! This is only the tip of the iceberg.
They tightened criteria for HEDS without proper research and left a large group of patients with major life altering symptome and no diagnosis.
They don’t do much to advocate for the lesser known forms of EDS other than HEDS and CEDS
They endorse phsyicians as “experts” who openly call eds A PSYCHOGENIC DISORDER.
And so, so much more. Their expensive studies paid for by donations are NOT going to actually benefit the community and do nothing to improve our quality of life. This is reminiscent of autism speaks and as we #wearredinstead for autism, i will not be supporting the ehlers danlos society. .
I’ll post more info as it comes to me.
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#ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #hypermobileehlersdanlossyndrome #eds #ehlersdanlos #ehlersdanlossociety #vasculareds #chronicillness #chronicallyill #spoonie
https://www.instagram.com/p/B40EkGUJMSw/?igshid=109rqztr7tdbs
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#Repost @perpetual.reflections
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#okapistrong .
With this project, we stand for the separation of the zebra and EDS, leaving it in its rightful place for rare disease awareness. .
With this project, we DENOUNCE the ehlers danlos society and all their corruption. .
With this project we support the unity of hypermobility spectrum disorders and ehlers danlos syndrome, because the separation was based on false information and anecdotal evidence. .
With this project, we will bring awareness to ALL forms of eds. NOT JUST HYPERMOBILE, VASCULAR, AND CLASSICAL. .
With this project, the okapi stands for the destruction of misinformation. .
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Ribbon by @theokapioandp
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#notjustbendy
#screwthezebra #ehlersdanlos #ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #eds #ehlersdanlossociety #zebra #medicalzebra #zebrastrong
https://www.instagram.com/p/B40CicIJZCR/?igshid=fy9uiny97tad
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TBT the only time a professional has ever taken my photo I am a beautiful flower
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(This is like a year old don’t worry I’m healing )
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#sexyenby #ehlersdanlossyndrome #ehlersdanlos #eds #zebralife #arthrogram #xray #needles #needlephobia #chronicillness #chronicpain #invisibleillness #imvisibleillnessawareness #shoulderdislocation #timeforphysio #bones #skeleton #spookyseason #spooky
https://www.instagram.com/p/CUvYZBEl2Tx/?utm_medium=tumblr
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So my body fell apart & I’m slowly getting it back together with doctors & physio & the Internet. I wanted to be Joseph Joestar so I got into working out…until a couple of months ago when my shoulder decided it didn’t like being in that socket anymore & is still making multiple attempts to vacate it. I got diagnosed with multidirectional instability, & am going to be tested for Ehlers-Danlos too. Maybe I will never be JoJo ☹️☹️ I’m still drawing, still summoning demons, still fighting TERFs on the Internet, but I can’t be out of bed for very long. Improving every day though! Physio is def NO PAIN NO GAIN. I will post some new art & some new SPOOKY & QUEER️ stickers very soon because I am WORKING THROUGH THE PAIN Here’s the band aid from my MRI arthrogram, don’t google that if you don’t like needles. I don’t like needles. I’m glad I didn’t know what was going to happen before I went in GANBATTE
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#queer #nonbinary #theythem #queerartist #eds #ehlersdanlos #ouchie #selfie #gingerbeard #queerlife #lgbt #pride #trans #queerillustrator
https://www.instagram.com/p/CB10OBGnqhd/?igshid=slfjcovjqtx6
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