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#ehlersdanlos

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This chihuahua had her annual checkup today & she is in perfect health! Hid behind the vet's computer monitor which is pretty much what I try to do when I'm in with a consultant 😸 #SimoneDeBeauvoirKitten

One question I get frequently is “what do I do when my doctor just wont listen?” So I posted about that on the blog today! {link in bio} I will be doing a new blog post every single Wednesday so stay tuned! Tonight’s is being posted later than they usually will because my brain has been focused on finals. But make sure to keep an eye out every Wednesday because I have a lot in store for you guys!

Got this cute reflector from being an active member of the EDS Society of Finland 🇫🇮
#sedy #EDS #edsfinland #activemember #volunteer #volunteering #ehlersdanlos #reflector #zebrareflector #zebraribbon #zebralife

How beautiful is she ?!❤️ follow @glam.sophie for future post❤️ and #glamfamm to be featured 🌹 📸 @sarageurts
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"And one day she discovered she was fierce, and strong, and full of fire, and that not even she could hold herself back because her passion burned brighter than her fears." - Mark A 📷 - @brianaberglund








#saturday #morning #quote #photoshoot #photograpy #latepost #ocean #ehlersdanlosawareness #ehlersdanlos #effyourbeautystandards #inmyskiniwin #mybeautymyway #loveyourbody #loveyourlines #selflove #nowrongway #beyou #bebeautiful #blessed #inspire #embrace #beauty #happy #real #perfectlyimperfect #imperfections #model #WLYG #becomewilhelmina

This was the last swimming competition I raced in before starting my series of ops. I’m missing swimming so much but only a few weeks left to go before I can get back in the water. It will only be kick but it’s better than nothing!
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#pots #potsie #spoonie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #malignantsyncope #dysautonomia #servicedog #assistancedog #swimmer #athlete #hypermobility #hiddendisability #RAS #reflexanoxicseizures #swimming #swim

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Tick tock
It’s four o’clock
Nervous system
Runs a-mock

Flip flops
It never stops
Brain runs faster
Pressure drops

Fight or flight
Through restless night
This busy mind
My lonely plight
Up and down
Must never frown
Keep smiling wide
Like saddest clown ‘Tick Tock’ ~ by Victoria Payne

https://facebook.com/PoemsbyVictoriaPayne/

#EDS #ehlersdanlos #chiari #chiarimalformation #POTS #potsproblems #dysautonomia #chronicmigraines #Insomnia #mayaswellhavestayedoutpartying #poet #poem #poetry #poetrycommunity #poetsofinstagram #pitypartypoetry #poemsbypayne #instapoem #painpoetry

After two cancellations due to anxiety, I put my game face on and followed through with having my port placed. It was a very simple procedure (thank you twilight sedation) and I came home shortly after. I was even able to attend my sons Christmas program--thank you pain medicine! Here is to easier infusions and the set up of TPN. I have been a full month (and a few days over) without adequate nutrition. I'm so sick and so weak. #betterthingsahead #portplacement #powerport #surgery #gastroparesis #gp #gastroparesisawareness #starvingforacure #ehlersdanlos #dysautonomia #awareness #recovery #ouch #battlewounds #warrior #gpawrrior #peoplehopetribe #chronicloveclub

Finally got the Ultrasound read report in my MyChart for my right arm. So there was a thrombus found in the Brachial Vein and Basilic Vein 👍🏻 nothin like two rare upper extremity DVTs to kickstart hip surgery healing 😂. But in all seriousness I’m so glad to have caught them early, the blood thinners are working, my arm pain is gone, and I’m thankful that I didn’t “let it go” like I normally would do 😬. .
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#dvt #deepveinthrombosis #deepveinthrombosissurvivor #thrombosis #bloodclot #spoonieproblems #spoonielife #rheumatoidarthritis #rheumatoiddisease #ehlersdanlossyndrome #ehlersdanlos #dysautonomia #autonomicdysfunction #fightlikeawarrior #zebrastrong

BUT, YOU DON’T LOOK SICK... I get many messages each day asking me what I’ve “got”, so I thought I'd share a little something about my Invisible Illness with my newbie followers.
My name is Danielle & I have EDS/Ehlers-Danlos Syndrome, a rare, genetic & incurable connective tissue disorder I was diagnosed with only 2 years ago.
I suffer from the hypermobility type of EDS & here's a bit about what makes me a mutant (basically, I'm one of the X-Men):
EDS causes my body to create faulty collagen. The problem with this is that collagen is found in almost every part of the body, including internal organs (so this disease is not only invisible, but it's also systemic) & my collagen is more like chewing gum (now the image makes sense... amirite?) rather than glue, like 'normal' people.
So the vast majority of the joints in my body move just like a contortionist.

Faulty collagen means that the structures of my body are looser than they should be & overall it isn't held together very well. As a result my body & internal organs/systems are "super-bendy" & I tend to recover/heal from injuries 2-3 times slower than 'normal', if at all.

All of this bendiness might be great for a career in Cirque Du Soleil as a contortionist, but not so much for little old me. In other words: I'm a total klutz & the most accident prone person you will ever meet.

Unfortunately, HEDS causes my joints to frequently dislocate and 'slip out of place', leading to constant pain, injury & arthritis in most of my joints, ligaments, tendons & muscles.

EDS also tends to come hand-in-hand with a range of "co-morbid" disorders that include MCAS/Mast Cell Activation Syndrome (I'm allergic to ERRY-damn-THING); POTS/Postural Orthostatic Tachycardia Syndrome (irregular heart rate & blood pressure = chronic fatigue dizziness & sometimes fainting); and lastly, lots of GI/gastrointestinal issues.

Told you that I'm a Genetic Trainwreck™️! You can't 'see' any of these conditions as they are "invisible illness", the only real indicator being my squishy, puffy cheeks caused by the multitude of medications I am currently on.
Your turn! Tell me what Invisible Illness you have below...

"I got you these apples because they remind me of you. Perfectly imperfect. They aren't the right shape or size and look a bit wonky and bendy but they are still as perfect just like you." Damn I'm lucky to have you Liam 💘 #spoonie #chronicillness #chronicpain #ehlersdanlos #fibromyalgia


So today I saw my GI doctor. I haven’t been able to eat a meal in about 2 weeks. I’m having issues with cramping as soon as anything hits my stomach. Not absorbing any nutrients- bc nothing will stay in my body. He’s concerned I may have a bleeding ulcer, or one on the verge of bleeding.
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- He did an exam and said I had severe epigastric pain and that made him concerned about an ulcer. He gave me a few meds, and wanted to give me and endoscopy next week, but because of the holidays he said he’d do it first thing after. So when I went to scheduling, of COURSE they scheduled me for nearly February. How I’m suppose to survive on the What- 300 calories I’m getting a day? Im not really sure. I may end up calling to complain. Because that’s some bullshit. Cross your fingers that I don’t perforate and bleed out 😅🤞🏼

From earlier this week in cardiology. Sinus tachycardia and postural orthostatic tachycardia are still problems. Gotta keep sodium loading. But I’m loving my new black hair, thanks to @sonyarose415. #invisibleillness #pots #spoonie #posturalorthostatictachycardiasyndrome #ehlersdanlos #ehlersdanlosgrrrls #ehlersdanlossyndrome #hospitalglam

I got a huge box full of gifts from my Secret Santa today, and everything is absolutely amazing. She sent me a bunch of bows and a pin from @therubypig (which she owns!) and this amazingly soft shirt and legging set from @agnesanddora
She also stuck this adorably pink penguin stuffie in there for me! I am SO shook by how adorable everything is. I am so thankful for my wonderful spoonie sisters!.
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#Spoonie #SecretSanta #Kawaii #ChronicIllness #InvisibleIllness #POTS #Dysautonomia #EhlersDanlos #ZebraPride #Pastels #KawaiiGirl #EmoGirl #SceneGirl #AgnesAndDora #TheRubyPig

And this is what happens when the car your ridding is rearended by a truck... For the driver might be nothing, but for an #ehlersdanlossyndrome patient with a rectified spine meant a severe whiplash and a pain flare that had me nock out on strong pain meds all afternoon.
I just hope that pain is all I have left

#Ehlersdanlos #EDS #butyoudontlooksick #invisibleillness #chronicillness #raynauds #chronicpain

Thank you for all the support this year through the changes in my health, my adoption of mobility aids, and constant fight for quality of life. 2018 will be more and the same. 🌠

When in doubt, if you cannot eat donuts, you wear donuts!
Donuts are one of my top favorite things to eat 😍🍩 (when my tummy allows me of course) since right now donuts are a no-go, might as well wear them!!!! ••
What’s your favorite sweet treat?! 😍
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#donuts #donutjammies #donutsarelife #gastroparesis #gastroparesissucks #ilovedonuts #pink #whenyacanteatthemwearthem #rheumatoidarthritis #rheumatoiddisease #ehlersdanlossyndrome #ehlersdanlos #autoimmunedisease #dysautonomia #dysmotility #autonomicdysfunction #spoonie #spoonieproblems #spoonielife #fightlikeawarrior #hipsurgery #surgeryrecovery

Bye little heart event monitor! I will (not) miss you! It didn’t take me long to get in enough events, especially considering my little POTS “attack” Tuesday night. Had a mild version of that same attack (the one that sent me to the ER) today right before finals 😬 but it went away, and I was able to complete my 1st final! #ehlersdanlossyndrome #ehlersdanlos #zebrastrong #zebrawarrior #eds #edszebra

Gotta love Ehlers Danlos and all the comorbid shit that comes with it like mitral valve prolapse and orthostatic intolerance. I get to wear this fashionable heart monitor for the next 4 weeks. #ehlersdanlos #orthostatictachycardia #rareconditions

This picture was taken after my visit at Vandy. A lot of people see pictures of me with makeup on, when I look my best. This is the real, raw side of Chronic Illness. Chronic Illness has left me feeling broken, frustrated and hopeless. I am lucky enough to be surrounded with such a supportive group of family and friends that continue to encourage me to share my story and advocate for others. This has been a bad day, hoping tomorrow will be better☀️ #ChronicIlness #EhlersDanlos #BioFeedback #SAVSTRONG

🎀 On and off fevers over 100 degrees F. 🎀 Positive blood cultures for an infection in my blood and tunneled catheter. 🎀 Stitched in double lumen PICC 🌺These blood infections can get scary fast. I’m now home, infusing a high dose antibiotic every 8 hours. 🌺I’m hardcore struggling coordinating it all. And then all the background life stuffs...too much #brain fog. 🌞I need to have a bomb-ass day. I want to feel carefree. If you would drop a helpful tip or two, it would be much appreciated. #selfcarematters .
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#portinfection #vancomycin #fuckdepression #fuckanxiety #spoonie #spoonielife #chronicpain #chronicillness #fibromyalgia #gastroparesis #tpn #ehlersdanlos #eds #hyperandrenergicdysautonomia #weightrollercoaster #invisibleillness #mentalhealth #anxiety #majordepression #depression #ptsd #iamnotmyillness #igers #igdaily

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When dealing with stress and conflict, I always try to remind myself of this. Not everything is my fault, there are a lot of things I cannot help. There are a lot of things not within my control. You must always try not to be too hard on yourself, and just try your best to be the best you you can be. #cptsd #ptsd #ptsdrecovery #chronicpain #chronicillnesschronicles #chronicfatigue #chronicallyill #ehlersdanlos #ehlersdanlossyndrome #eds #anxiety #depression #depressionquotes #anxietyquotes #comics #stressedout #chibird #chibiart

Ashlyn has had a long day a the docs today. She has seen the geneticist and the allergy doc, now off to the chiropractor. She was diagnosed with EDS, Ehlers Danlos syndrome-hyper mobility syndrome.
#EDS #ehlersdanlos #childmodel #chiropractor #childactress #allergyinjection #doctor #hypermobility #geneticist #beautiful #gorgeous #ashlynrainn #youngandtalented #childadvocate #ashlyn_rainn #youtuber #utubesensations #asthma #socialmediainfluencer #influencer

Came out of surgery yesterday doing pretty well. Anesthesia wore off pretty fast so I was out of the hospital by 1 pm after a roughly 2 1/2 hour surgery. My labrum had retorn so Dr. McCormick replaced the stitches, as well as removed bone and tissue growths that shouldn't have been there.

Pain isn't bad right now, but I woke up to find that I'd ripped up all my bandages and one set of stitches in my sleep. My skin usually rejects stitches anyway, but I guess the Dermatillomania won out. However, my amazing mom came and cleared my bed of bloody bandages (a lot more bleeding than last time) and replaced them with new ones. Gotta love having a nurse mom!😘 I'll post updates soon. #HipScopeRound2

#tbt a mi cumpleaños número 4.
Algunas personas me preguntan si siempre he tenido #hiperlaxitud o si tuve #ehlersdanlos desde que nací y la respuesta es: SÍ.
Como pueden ver en la foto, los dedos de mi mano derecha se hiper extienden sólo con apoyarme en ella, pero ese sólo es uno de los síntomas de la enfermedad, también desde niña tuve #colitis y problemas de #pieplano, sólo por mencionar algunos detalles. Así que sí, se nace con Ehlers Danlos y lo único que se puede hacer al respecto, es atender los síntomas que van saliendo.

My #pcp wants me to go to Baltimore to the #ehlersdanlos institute. Part of me is hopeful but the rest of me is #heartbroken. I hate this. Fuck #eds.

#Repost @k3lyv
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As many of you know I have had a pretty tough year with my health thanks to my hypermobility Ehlers-Danlos syndrome and fibromyalgia. I am learning to live with not knowing day to day how my body will be but finally research is starting to be done and hopefully soon we will know more and have more answers on how to control these conditions.
It has changed my life a lot but I’m one of the lucky ones still although I don’t know how my body will deteriorate in the future, this may be as bad as it gets or it could get much worse.
I know it’s Christmas and we’re all skint but if you could spare anything to donate towards the research it would be amazing
If not then maybe read this and watch the video and it may help you understand a bit more about the condition.
Ehlers-Danlos syndrome is one of the most under funded and under researched conditions around which means we have to fight for help and understanding, even from the experts.
To donate £5 you can text EDS5 DIET to 70500. The link to the video is https://www.ehlers-danlos.org/news/12-24-a-film-about-eds-raising-funds-for-vital-research-to-help-make-lives-better/
Thank you, even if for just reading this, Kel xx. #ehlersdanlossyndrome #ehlersdanlosuk #ehlersdanlos #edswarrior #knowthesigns #anythingwillhelp #idontusuallydothisbutitsimportant @ehlersdanlosuk @ehlers.danlos #hypermobility #hEDS

Having fun during the photoshoot 😎 Wheelie life!

Fotograaf: Maryla Fossen
SUE's Warriors: @sues_warriors

Broken crayons still color!! -

#wheelchairmodel #spinalcordinjury #diversityinfashion #sueswarriors #photoshoot #ehlersdanlos #teamfuckcancer #inclusion

I often define myself by what I can’t do. It’s not a conscious thing, but when you’re so frequently limited - be that in work, in socialising, in hobbies, or even in getting out of bed, it can become really difficult to see yourself as having any inherent value. A lot of this is tied up with the way society sees value: the more hours you put in, the more you physically ‘show up’, the harder you’re working and the more value you have. I see this manifest in two ways in my life. The first one, obviously, is with my work. I know that I have talents and skills and things that I can offer above and beyond even healthy people, but because I can’t ‘be there’, or even work anywhere near to full-time when I’m at home, it severely diminishes my self-confidence and how I see my value. It’s bollocks because what I can do can mostly be done from my bed, but I genuinely wasn’t expecting it to be so emotionally hard catching a glimpse of the life I could have been living, while trapped at home trying to make the most of it. It has been hard to accept that I may be producing LESS work, and at a rate and quality that is often below what I know I’m capable of - but that’s unfortunately something I have to get better at living with. I may work slower. I may have days where I can’t function. And ultimately, I shouldn’t tie up my self-worth with my work, but when it’s been taken away from you, I think it’s inevitable that in some way you will. This also manifests for me in my relationships. I often find it hard to accept that I have value in a relationship because I find it so hard to see beyond ‘the burden I place on others’ (WHICH TO THEM I DO NOT AT ALL AND EVEN THOUGH I KNOW THAT IT’S SO HARD TO BELIEVE) and that I can offer anything to them aside from that. Which, obviously is totally bollocks because I’m fucking amazing and supportive of the people I love. But when your body feels like it’s constantly attacking you, it’s hard to forget that ‘showing up’ in a traditional way doesn’t mean anything. We need to shift how we view productivity and challenge our assumptions of value in our society. Continued in comment!

Fed up with life at the moment. Fed up being pain everyday. Fed up having to deal with joint issues everyday. Fed up of needing to use a wheelchair. Just wish things would settle down again.
I also won’t stop using mh IG because a website thinks they are medically trained and knows all about the ins and outs of my. What I talk about on here is not in anyway every single in and out of my life. Spend a day in my shoes because you judge me #hypermobility #hypermobilitysyndrome #ehlersdanlos #ehlersdanlossyndrome #EDS #epilepsy #seizure #seizuredisorder #asthma #ADHD #christian #chronicpain #chronicfatigue #invisibleillness #mentalhealth #mentalhealthproblems #hallucinations #mooddisorder #depression #wheelchairuser #neurologicalfunctionaldisorder #hypoglycemia #borderlinepersonalitydisorder #emotionallyunstabledborderlinepersonalitydisorder #BPD

There is no place in my logical reasoning skills where it makes sense that I can do strict handstand pushups. But here we are, cheating physics and physiology. I've wanted to be able to do these since I was 5 watching my big brothers do them. Miracles happen y'all, just keep showing up. #survivortocompetitor #cutterfitness #crossfit #iamadaptive #ehlersdanlos #plexus #fitchicks #girlswholift #fitness #brickhousetobeefcastle #liftheavy #macros #iifym #functionalthickness #eatcleantraindirty

had quite the time at my cardiac electrophysiologist appointment today.
homeboy was a handful and a half.
but, he’s trying me on beta blockers and midodrine so maybe we’ll make some progress! also he encouraged us to look into cleveland clinic, so we’ll see. 👀

#ehlersdanlossyndrome #ehlersdanlos #eds #pots #potsie #potsy #potssyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #tmj #tmjd #scoliosis #vertigo #spinalinstability #raredisease #spoonie #sicko #chronicillness #chronicpain #chronicfatigue

Merry xmas. What a tangled mess of Velcro every time set to get ready. The things I have to do to prepare myself for the day to walk with minimum pain and reduce high permeability to my legs and my wrist.#velcrobrace#kneesurgerybrace#me #kneebrace#kneepain#mykneessuck#ACLbrace#tornMCL#ehlersdanlos#chronicpainwarrior #EDS#zebra#my #mystory#myedsstory

Love this #jillbriscoe quote. Good words for my 2018. So often we adopt the “warrior” mentality, when in actuality we need to fight like hell for contentment and acceptance, not change. It takes strength to stay and give in situations of adversity. I can’t accomplish this goal without divine help!
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#chronicLIFE #chronicmom #sjogrens #sjogrenssyndrome #autoimmune #autoimmunedisease #ehlersdanlos #ehlersdanlossyndrome #addisonsdisease #arthritis #rheum #invisibleillness #peopehopetribe #peoplehopeorg

This chihuahua had her annual checkup today & she is in perfect health! Hid behind the vet's computer monitor which is pretty much what I try to do when I'm in with a consultant 😸 #SimoneDeBeauvoirKitten

Had a phone call with my doctor instead, took notes, and still have no memory of what we talked about. This is one of the reasons I have to have someone else with me in appointments (the others being that I can't drive or lift my wheelchair or reliably get around in my wheelchair). It's all just gone. I hoped this would have improved after coming off the gabapentin, but no such luck yet. Really hoping it didn't permanently damage my brain, as it's known to do...I miss the way I used to think and process things. Everything is so fuzzy and blank at the same time, now. And I have no idea what is medication related fog versus chronic illness fog versus just plain deconditioning.
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On the upside, feeling a little more human than earlier. My tramadol finally kicked in (though a double dose is not working nearly as well as it should) and my coffee woke me up. Still extremely fatigued and dragging, but at least I'm up.
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#spoonie #spooniestrong #chronicillness #chronicallyill #fibromyalgia #fibrofog #fibromyalgiasucks #chronicfatigue #chronicfatiguesyndrome #POTs #potsie #posturalorthostatictachycardiasyndrome #edstype3 #edszebra #ehlersdanlosgrrrls #ehlersdanlossyndrome #ehlersdanlos #hypermobilityeds #hypermobileeds #hypermobileehlersdanlos #migraines #brainfog

I use art as a way to cope with pain, and it works too - sometimes too well. I can wind up getting so absorbed that I am in one position for too long, or overuse my hands. It's still worth it. #nofilter #art #artharder #artedtoohard #invisibledisability #fibro #ehlersdanlos #chronicinflammation

Reost from @positivelyill - "You always need to take care of yourself over anything or anyone else. With chronic illness, you need to make sure that you are your first priority. There is an absolute need to take care of yourself before anyone else, your health is a big priority. Don’t let anyone tell you different." #spoonie #chronicillness #ehlersdanlossyndrome #eds #ehlersdanlos #positivity #chronicillnesssupport #support #encouragement #chronicillness #chronicallyill #chronicfatigue #chronicpain #invisibleillness #butyoudontlooksick #zoestribe

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