#eds

It's officially Mast Cell Disease Awareness Day in some parts of the world! My mast cells never respect days and time anyway. Maybe that's why I have so many friends in Australia? 🤣 
I was diagnosed with #MCAS in December 2015 after five abnormal mast cell test results and a lifetime of symptoms. I rely on medication to block or reduce the ridiculous amounts of chemical mediators released by my mast cells. I spend most of my time in solitary confinement to minimize my exposure to triggers.

I also deal with the following comorbidities. Treating MCAS helps me reduce the symptoms of these conditions.

Ehlers-Danlos syndrome (#EDS): My connective tissue is fragile and my joints are hypermobile. Most recently, I had a spontaneous cerebrospinal fluid leak, a common complication of EDS.

Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (#POTS): When I stand up and my MCAS symptoms are not well-controlled, my heart rate and blood pressure spike and my hands tremor.

#Interstitialcystitis and nephritis: Inflammation of the urinary tract is a very common symptom of MCAS. I began experiencing symptoms at age 3. Kidney stones worsened reactions in my right kidney.

Premenstrual dysphoric disorder (#PMDD): I have severe mast cell reactions to normal hormone fluctuations. I take continuous hormone pills to suppress fluctuations and avoid reactions. 
#MCAD #mastcelldisease #mastcelldiseaseawarenessday #fibromyalgia7 minutes agoDownload
Come bask in the fake sunshine with me Lou Bug!

#catsofinstagram #loubug #oxygen #sunlamp #willthishelp #idk #mycat #oneofmycats #chronicillness #chronicpain #witchhat #againidk #eds9 minutes agoDownload
As you get older party tricks are not relevant anymore, however being able to get both hands behind your back to apply some emergency tape is pretty handy. This is a sticky trick to pull off getting the angle and stretch right. Proud, it'll have to do! •
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#toomuchlifting #kttape #gripit #bettterthanpainkillers #hypermobility #eds16 minutes agoDownload
This made me smile and I hope it makes you smile too! 😆 This is very true tho. I always try and shower as fast as I can as it’s so exhausting and my body goes so faint and my vision goes, even sitting down on my shower stall! So it generally feels like this post- a race to get everything done 😂
#potsie #potsieproblems #pots #dizzy #eds #ehlorsdanlossyndrome #fibromyalgia #fibro #pots #potssyndrome #posturalorthostatictachycardiasyndrome #potsawareness #potsproblems #potsieproblems #dyautonomia #dysautonomiaawareness #dysautonomiaawarenessmonth #dysautonomiawarrior #dysautonomiasucks #dysautonomiaproblems #potswarrior #potswarriors #humor16 minutes agoDownload
Saturday, sofá and good company 👑
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#mindfulness #mentalhealth #anxiety  #hypervigilance #depression #follow #suicideprevention #fibromyalgia #spoonie #butyoudontlooksick #instagood #instagram #pic #bestoftheday #photography #nofilter #eds #heds #hypermobility #ehlersdanlossyndrome #surgery #brokenbody #inspirational #cats #ilovemycat19 minutes agoDownload
...hi! I'm still here; still knitting rainbows. I have some new hardware, though! My ring splints by #blisssplints at @spauldingrehab ! They're really cool looking, but also are functional in keeping my hypermobile EDS fingers from hyperextending how they prefer. I was worried they would be a deterrent to my crafting but they help keep me from using hand positions that tire my hands! 
I haven't been doing a ton in the way of fiber arts recently, due to a combination of my various conditions smashing together and making it difficult, but I'm hopefully back in a new streak! Last week's excursion with @inbetweenerlady to @blacksheepknit definitely helped. I picked up this gorgeous Queensland Collection Perth in Rainbow Reef, and I'm in love. 😍
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#knitnfrog #knit #knitting #sockknitting #handknit #handknitsock #knittingintheround #silverringsplints #ringsplints #fingersplints #donnavanhelene #handot #eds #ehlersdanlossyndrome #hypermobility22 minutes agoDownload
...hi! I'm still here; still knitting rainbows. I have some new hardware, though! My ring splints by #blisssplints at @spauldingrehab ! They're really cool looking, but also are functional in keeping my hypermobile EDS fingers from hyperextending how they prefer. I was worried they would be a deterrent to my crafting but they help keep me from using hand positions that tire my hands! 
I haven't been doing a ton in the way of fiber arts recently, due to a combination of my various conditions smashing together and making it difficult, but I'm hopefully back in a new streak! Last week's excursion with @inbetweenerlady to @blacksheepknit definitely helped. I picked up this gorgeous Queensland Collection Perth in Rainbow Reef, and I'm in love. 😍
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#knitnfrog #knit #knitting #sockknitting #handknit #handknitsock #knittingintheround #silverringsplints #ringsplints #fingersplints #donnavanhelene #handot #eds #ehlersdanlossyndrome #hypermobility22 minutes agoDownload
...hi! I'm still here; still knitting rainbows. I have some new hardware, though! My ring splints by #blisssplints at @spauldingrehab ! They're really cool looking, but also are functional in keeping my hypermobile EDS fingers from hyperextending how they prefer. I was worried they would be a deterrent to my crafting but they help keep me from using hand positions that tire my hands! 
I haven't been doing a ton in the way of fiber arts recently, due to a combination of my various conditions smashing together and making it difficult, but I'm hopefully back in a new streak! Last week's excursion with @inbetweenerlady to @blacksheepknit definitely helped. I picked up this gorgeous Queensland Collection Perth in Rainbow Reef, and I'm in love. 😍
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#knitnfrog #knit #knitting #sockknitting #handknit #handknitsock #knittingintheround #silverringsplints #ringsplints #fingersplints #donnavanhelene #handot #eds #ehlersdanlossyndrome #hypermobility22 minutes agoDownload
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Listen to the full interview on the DISabled to ENabled podcast with @trippingthroughtreacle ⠀
(Link in bio)⠀
#invisibleillness #chronicillness #chronicpain #spoonie #fibromyalgia #anxiety #butyoudontlooksick #spoonielife #chronicfatigue #ladygagaquotes #depression #health #pain #autoimmunedisease #autoimmune #eds #chronicillnesswarrior #chronicfatiguesyndrome #endometriosis #chronicallyill #cfs #multiplesclerosis #chronicpainwarrior #ibd #ehlersdanlossyndrome #crohnsdisease #mentalhealthawareness #selmablair #fatigue #ladygaga22 minutes agoDownload
✨ Weekend Pink Salt Collective Vibes ✨ pc: @autoimmunesisters 
Wishing all you bad-ass, illness fighting, self-compassionate, WARRIORS a beautiful Saturday! I’m laying in bed with my hair not unlike this photo, nursing a headache, sipping some soon-to-be-contraband coffee, DMing a few of you and reveling in the beauty of this community we’re building around our (now) shared experiences. How beautiful that we can come together and share our experiences to strengthen one another- “a rising tide lifts all boats”- we are stronger, more compassionate and all around better together. 💖✨🥄 brain fog is kicking in so signing off while I still semi-make sense. Sending all the light, love, salt, spoons and gratitude I can muster 💖✨🥄 Tag a spoonie friend who is a COUCH PARTY KWEEN in the comments 👇🏻👇🏻👇🏻and let’s get this #spoonieparty going, cause ain’t no party like a spoonie party cause a spoonie party don’t stop!! 🎉 #RAISEDAROOF24 minutes agoDownload
Happy #internationalginandtonicday 🥂 thank you @drinkupldn & @fevertreemixers for our feee Gins 🙌🏽🙌🏽🙌🏽
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#chronicpain #chronicillness #spoonie #ibs #eds #asthma  #fibromyalgia  #disabled #hypermobility #london #ehlersdanlossyndrome #chronic fatigue #pots #pain #Dysautonomia #painrelief #spiritual #edsawareness #healing #london #hepaticadenoma  #anxiety #selfcare #affirmations #pain #gratitude #portobellogin32 minutes agoDownload
Happy #internationalginandtonicday 🥂 thank you @drinkupldn & @fevertreemixers for our feee Gins 🙌🏽🙌🏽🙌🏽
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💜💜💜💜💜💜💜💜💜💜💜💜💜💜
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#chronicpain #chronicillness #spoonie #ibs #eds #asthma  #fibromyalgia  #disabled #hypermobility #london #ehlersdanlossyndrome #chronic fatigue #pots #pain #Dysautonomia #painrelief #spiritual #edsawareness #healing #london #hepaticadenoma  #anxiety #selfcare #affirmations #pain #gratitude #portobellogin32 minutes agoDownload
Bramble and his new Emotional Support Octopus. 🐙 This is octopus number 4 for him. 😂To bring it home it had to sit on my lap with legs wrapped around my waist going through the city centre to the bus, smacking people on either side with the other legs. It needed its own wheelchair really. 😂He's very sad it's gone away in the cupboard now for his Christmas present. 
#bramble #goldenretriever #goldenretrieverpuppy #goldensofinstagram #dogsofinstagram #assistancedogintraining #assistancedog #adit #sdit #dogtraining #puppytraining #socialisation #goldenboy #goodboy #eds #fnd #servicedog #workingdog #fibromyalgia #deaf #actuallyautistic #syncope #medicalalert #medicalresponse #ehlersdanlossyndrome34 minutes agoDownload
😁 #Repost @spooniespecies
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And??? 😂🧦👑
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#chronicillness #chronicpain #chronicpainwarrior #chronicillnesswarrior #chronicillnessawareness #invisibleillness #invisibleillnesses #invisibleillnesses #ankylosingspondylitis #fibro #fibromyalgia #spondy #rheumatoidarthritis #pots #eds #endometriosis #copd #crps #me #chronicfatigue #chronicfatiguesyndrome #spoonie #spooniehumor #spoonielife #spooniesupport #spoonies #butyoudontlooksick #notalldisabilitiesarevisible #spooniespecies34 minutes agoDownload
I absolutely love my new job and am so so grateful to work in such an amazing place and with the most lovely people😍🥳 Being 16 makes it hard enough to find a job anyway but add sixth form and a wheelchair into the mix, it makes it a whole lot harder! 
I saw an oppurtunity of a job and took it, I went through the exact same recruitment process as everybody else & I somehow succeeded 😊 I was seen as Maddie and not for my wheelchair & I cannot even begin to express how amazing that feels❤ 
Today was my first day and my god was it eventful!! Getting used to what to do, a random fire alarm, a few technical mishaps and even a cow GIVING BIRTH in a car park!!!😂🥳 I just want to say to anyone with a disability or a condition that they feel hinders them in any way, shape or form; do not doubt yourself or let others doubt you, you are capable of so so much and if I can do it, you can do it! So go out there and live your life and yes, it may sometimes be unconventional, but where did the fun ever come from being conventional?! 🧡🧡🧡 If anybody was to come to Warwick castle, we now have the sunflower lanyard scheme to offer, so those with invisible disabilities can ask me or one of my admissions colleagues for one to alert other people during your time around the castle 🌻

#crps#cps#eds#wheelchair#athlete#job#sixthform#love#thisgirlcan#smile#happy#proud#warwickcastle#excited#independent#ablenotdisabled#blessed36 minutes agoDownload
I absolutely love my new job and am so so grateful to work in such an amazing place and with the most lovely people😍🥳 Being 16 makes it hard enough to find a job anyway but add sixth form and a wheelchair into the mix, it makes it a whole lot harder! 
I saw an oppurtunity of a job and took it, I went through the exact same recruitment process as everybody else & I somehow succeeded 😊 I was seen as Maddie and not for my wheelchair & I cannot even begin to express how amazing that feels❤ 
Today was my first day and my god was it eventful!! Getting used to what to do, a random fire alarm, a few technical mishaps and even a cow GIVING BIRTH in a car park!!!😂🥳 I just want to say to anyone with a disability or a condition that they feel hinders them in any way, shape or form; do not doubt yourself or let others doubt you, you are capable of so so much and if I can do it, you can do it! So go out there and live your life and yes, it may sometimes be unconventional, but where did the fun ever come from being conventional?! 🧡🧡🧡 If anybody was to come to Warwick castle, we now have the sunflower lanyard scheme to offer, so those with invisible disabilities can ask me or one of my admissions colleagues for one to alert other people during your time around the castle 🌻

#crps#cps#eds#wheelchair#athlete#job#sixthform#love#thisgirlcan#smile#happy#proud#warwickcastle#excited#independent#ablenotdisabled#blessed36 minutes agoDownload
I absolutely love my new job and am so so grateful to work in such an amazing place and with the most lovely people😍🥳 Being 16 makes it hard enough to find a job anyway but add sixth form and a wheelchair into the mix, it makes it a whole lot harder! 
I saw an oppurtunity of a job and took it, I went through the exact same recruitment process as everybody else & I somehow succeeded 😊 I was seen as Maddie and not for my wheelchair & I cannot even begin to express how amazing that feels❤ 
Today was my first day and my god was it eventful!! Getting used to what to do, a random fire alarm, a few technical mishaps and even a cow GIVING BIRTH in a car park!!!😂🥳 I just want to say to anyone with a disability or a condition that they feel hinders them in any way, shape or form; do not doubt yourself or let others doubt you, you are capable of so so much and if I can do it, you can do it! So go out there and live your life and yes, it may sometimes be unconventional, but where did the fun ever come from being conventional?! 🧡🧡🧡 If anybody was to come to Warwick castle, we now have the sunflower lanyard scheme to offer, so those with invisible disabilities can ask me or one of my admissions colleagues for one to alert other people during your time around the castle 🌻

#crps#cps#eds#wheelchair#athlete#job#sixthform#love#thisgirlcan#smile#happy#proud#warwickcastle#excited#independent#ablenotdisabled#blessed36 minutes agoDownload
This decoration will be wrapped and gifted to my amazing grandparents, as it was both their favourite.
I know they’ll be thrilled especially as they think it’s going to be sold at a craft fair
#christmas #decoration#homemade #handmade #glass #beading #wire #glassbead #chronicillness #ehlersdanlos #eds #ehlersdablossyndrome #pots #posturalorthostatictachycardiasyndrome #posturalorthostatictachycardia #chronicchillness41 minutes agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
#reddie #reddiememes #it2017 #it2019 #itmemes #richietozier #eddiekaspbrak #beverlymarsh #trashmouth #eds #eddiespaghetti #bevvie #an hour agoDownload
Yesterday was a very busy, very enjoyable day. A #moderatepainday. Housework, shopping in town, then secret cinema and finally food shopping. Over did it. Today is a #highpainday.
 But I'm grateful for my central heating, unlimited hot water(a huge hot bath!) , a microwave and a wheatsack, the day just  pottering around doing gentle jobs, and lots of rest.  #gratitude #spoonie #EDS #fatigue #fibromyalgia #moaningminne #rheumatoidarthritis #hypermobilitysyndrome #blessthidoldladybodyan hour agoDownload
You get all my smooches [Art: @hailbailhero ]
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#richie #richietozier #tozier #trashmouth #trashmouthtozier #eddie #eds #eddiekaspbrak #edskaspbrak #reddie #imreddietodie #it #itlosersclub #loserscluban hour agoDownload
#pzl #eds #dbat vralll🏃🏃an hour agoDownload
You really are the night in shining armor in my movie, baby
[Art: dognong (tumblr)]
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#richie #richietozier #tozier #trashmouth #trashmouthtozier #eddie #eds #eddiekaspbrak #edskaspbrak #reddie #imreddietodie #it #itlosersclub #loserscluban hour agoDownload
TEETH! -

Trained as an owner assisted dog through @starfleetservicedogs -

Partners 🐾
@booandchekov
@poodleaide
@helpfulmatiandmaverick
@service_squish -

#servicedog #starfleetservicedogs #workingdog #servicedogteam #featurefur #dogsofinstagram #ehlersdanlossyndrome #ehlersdanlos #tasktrained #dysautonomia #husky #germanshepherd #pots #eds #endfatdogtrend #rescuedog #servicedogsofinstagram #dysautonomia #embraceyourpets #huskiesofinstagram  #servicedogsofinstagraman hour agoDownload
My husband gets me. #PostOp #anklereconstruction #EDS #hEDS #EverythingHurtsAndImDyingan hour agoDownload
My greatest luxury is my bath, I couldn't live without it. Just been in it for the 2nd time today, not gonna rule out a 3rd one 😊

#bubblebath
#eds
#warrioran hour agoDownload
Dumb doodle of Richie being gay featuring Eddie (being gay too), and a Stan with scars on his face.  Probably gonna see It Chapter Two tomorrow (fINnaLy) and I'm pretty excited
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#art #traditionalart #dessin #dessintraditionnel #line #005 #line005 #yellow #jaune #richie #richard #tozier #richietozier #eddie #eds #edward #kaspbrak #eddiekaspbrak #finnwolfhard #jackgrazer #jackdylangrazer #it #it2017 #itfanart #losers #loserscluban hour agoDownload
Dumb doodle of Richie being gay featuring Eddie (being gay too), and a Stan with scars on his face.  Probably gonna see It Chapter Two tomorrow (fINnaLy) and I'm pretty excited
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#art #traditionalart #dessin #dessintraditionnel #line #005 #line005 #yellow #jaune #richie #richard #tozier #richietozier #eddie #eds #edward #kaspbrak #eddiekaspbrak #finnwolfhard #jackgrazer #jackdylangrazer #it #it2017 #itfanart #losers #loserscluban hour agoDownload
Dumb doodle of Richie being gay featuring Eddie (being gay too), and a Stan with scars on his face.  Probably gonna see It Chapter Two tomorrow (fINnaLy) and I'm pretty excited
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#art #traditionalart #dessin #dessintraditionnel #line #005 #line005 #yellow #jaune #richie #richard #tozier #richietozier #eddie #eds #edward #kaspbrak #eddiekaspbrak #finnwolfhard #jackgrazer #jackdylangrazer #it #it2017 #itfanart #losers #loserscluban hour agoDownload
Dumb doodle of Richie being gay featuring Eddie (being gay too), and a Stan with scars on his face.  Probably gonna see It Chapter Two tomorrow (fINnaLy) and I'm pretty excited
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#art #traditionalart #dessin #dessintraditionnel #line #005 #line005 #yellow #jaune #richie #richard #tozier #richietozier #eddie #eds #edward #kaspbrak #eddiekaspbrak #finnwolfhard #jackgrazer #jackdylangrazer #it #it2017 #itfanart #losers #loserscluban hour agoDownload
Acquisition of decompositionan hour agoDownload
Sometimes the littlest things are the most life saving. In the months since #bobthebastard clot we’ve had to play with the dosages of #lovenox like crazy and I’m still throwing clots. I meet with my #hematologist Monday to see if this last round of testing yields any answers about what’s going on. But according to the doc, even if we don’t find any answers it doesn’t change management of what’s going on, it would just be really nice to KNOW, especially if it’s genetic so that I know for the kids. He says they’re already at higher risks for clotting because of my clots regardless of cause, but just knowing would give me some piece of mind. .
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#clottingdisorder #chronicillness #answers #ehlersdanlossyndrome #eds #dysautonomia #pots #potssyndrome #potsie #spoonie #webewarrior #healthbeme #gastroparesis #gp #mastcellactivationdisorder #mcas #zebra #warrior #ichoosejoy #butyoudontlooksickan hour agoDownload
you were given this life because you are strong enough to live it!!! #spoonie #spoonielife #spooniestrong #chronicpain #chronicillness #chronicillnesswarrior #invisibleillness #invisibledisability #disability #disabilityawareness #autoimmunedisease #fibromaylgia #multiplesclerosis #lupus #eds #pots #gastroparesis #cysticfibrosis #chronicfatiguesyndrome #endometriosis #dysautonomia #arthritis #rheumatoidarthritis #ibs #ibd #lyme #crps #chronsdisease #mcas #butyoudontlooksickan hour agoDownload
I was kinda curious if I could still do this...
Turns out I can. Ta-daa!
#flexibleAF #mightbeamedicalproblem #EDS?an hour agoDownload
And??? 😂🧦👑
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#chronicillness #chronicpain #chronicpainwarrior #chronicillnesswarrior #chronicillnessawareness #invisibleillness #invisibleillnesses #invisibleillnesses #ankylosingspondylitis #fibro #fibromyalgia #spondy #rheumatoidarthritis #pots #eds #endometriosis #copd #crps #me #chronicfatigue #chronicfatiguesyndrome #spoonie #spooniehumor #spoonielife #spooniesupport #spoonies #butyoudontlooksick #notalldisabilitiesarevisible #spooniespeciesan hour agoDownload
🎶I don’t know what you’ve been told 🎶but “There are no mistakes; there are just solos” -@skyfasa 😅#yaaass #dancequotes .
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It’s been two years since I’ve taken @jo.slay’s class and I am completely rusty with his musicality and intricacies🥺😭 Last night was my first class at @elementsdancespace! I am incredibly grateful to learn from @jo.slay again and be inspired and honored to be sharing the floor with @skyfasa @katieelisewithrow who are hella strong amazing dancers. Thank you so much! And this song was just #relatable 😂🤷🏽‍♀️
🎶Dead to Me-Kali Uchis
Choreo by Josue Garcia
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#saturdayslay #freshfromfriday #heelsclass #heelstraining #josuegarciachoreography #heelstesting #deadtome #live #love #slay #roadtocarnival #eds #elementsdancespace #dancediariiree #grateful
an hour agoDownload
Painting by number... on my face! 🖌🙌
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#maskcarabeauty #stelladotstyle #entrepreneurlife #actuallyican #empowerment #girlboss #beyourownboss #757mom #chesapeakeva #chesapeakemoms #rise #girlsonfire #creativeslivehappy #believeinyourself #findyourpath #boymom #womenwithvision #lovemybiz #yourvibeattractsyourtribe #createyourhappy #hamptonroadsmoms #maskcaraartist #eds #ehlersdanlossyndrome #zebra #feelbeautiful #connectivetissuedisorder #workfromhome #workfromhomemom #navywifelife2 hours agoDownload
It's #invisibledisabilitiesweek

Show kindness and compassion when someone says they are #disabled or have an #invisibleillness like #AnkylosingSpondylitis, #Fibromyalgia, #MECFS, Crohn's, MS, #Lupus, #endometriosis, IBD, #EDS, etc. There are so many!

People with disabilities are at a higher risk of abuse, neglect and being victims of crime. Estimates show they are at least 4 to 10 times more likely to be victims than people without #disabilities are. 
Here are examples of how I have been treated in and out of my wheelchair: 🤯 Accused of abusing flight assistance because I don't look like I need it
🤯 I stopped using public transpo because people yelled at me for using the priority seats because I don't look sick
🤯 I've had people sit on me in the hospital waiting room because people thought I was being disrespectful to not give up my seat
🤯 I've had people move my wheelchair without my permission
🤯 Transported by animal cargo in Manila because the airline was not prepared for me. I let them know in advance. 🤯 A Toronto Pearson airport porter yelled at me for the 20 minutes it took to take my bags from terminal 1 to terminal 2. I paid him 3x his normal fee. He abused me the entire time: called me a liar, said I was dumb not to give myself enough time between flight transfers, and said I would never make my flight. He took off with my personal belongings while my assistant was running with me in the wheelchair to catch up.
🤯 I've had people threaten to physically move me because I was in the way.
🤯 I've had able bodied people ignore my requests and make decisions for me by judging my appearance.
🤯 I've had people push in front of me at disability elevators because they did not believe I needed to use the elevator.
🤯 Disabled parking spots in North America? Heaven forbid you don't at least have a cane as proof.

#AWARENESSMATTERS

We all try so hard every day to keep things normal and to fit in. It's time to recognize the efforts we make to live in a world that is not made for us. 
#chronicillness #chronicpain #keepongoing #nevergiveup #Spoonie #Spondylitis #autoimmune #butyoudontlooksick
#mentalhealth #depression #staystrong #arthritis #disability2 hours agoDownload
I like rainbow 😂 -
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#drawing #ipaddrawing #hobby #bored #chronicillness #eds #ehlersdanlossyndrome #pots #hyperpots #posturalorthostatictachycardiasyndrome #mcas #mastcellactivationsyndrome #lupus #sjogrens2 hours agoDownload
Hearing things like, “Oh, you too?” and, “I thought it was just me!?” from others lets us know we aren’t alone. So many of these diseases want to keep us in the dark, but when we share our stories, we shed light and awareness. You matter. Your story matters. You aren’t alone and together we stand and fight. Strength in numbers. 💜 We love and appreciate each and every one of you who shares this space with us and hope you are taking care of your beautiful selves this weekend!2 hours agoDownload
There are 230 CTDS-keep demanding better Awareness2 hours agoDownload
Visitá nuestra web 😄⠀
☑️ Hacemos envíos a todo el país!⠀
☑️ Podes abonarlo con tarjeta de crédito⠀
¡AHORA OFRECEMOS 3 CUOTAS SIN INTERÉS CON TODOS LOS BANCOS!⠀
#EdS #LibrosDerecho2 hours agoDownload
#eds #mybodyhatesme #zebra2 hours agoDownload
Being Strong, Athletic & obviously QUEER  @the_jrda team usa tryouts! SO'ed the female scrimmage on to the open tryouts in  a little bit.
#rollerskate #rollerskatelife #rollerskateeveryday #rollerskater #rollerderby #rollerderbylife #rollerderbytraining #rollerderbypractice #jrda #juniorrollerderby #wearephilly #skatewithpride #donthatejustskate #skateortry #skateorcry #thefutureisbright #beiconic #strongathletic #queerskatealliance #queer #queerdo #queersonquads #nonbinary #chronicpain #EDS #EDSathletes #POTS2 hours agoDownload
Smashed my workout today! Did a lot of compound exercises, and 20 minutes running ! ❤️
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#ehlersdanlossyndrome #pt #fighter #strong #blog #personaltrainer #eds #kos #greece #model #tan #makeup #fit #fitness #gym #gymshark #follow #f4f #followforlike #followforfollow #like #likeforlike #like4follow #l4l #bodybuilding #herbaliferesults#herbalife #herbalifeshake2 hours agoDownload
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new edit again, girls.
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my favorite paring so hope you appreciate it.
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support by subscription.
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dt noted
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tags: #fackedit #fackedits #reddiecanon #reddie #reddieedit #edit #edits #finnwolfhardedit #finnxjack #richietozieredit #richietozier #finnwolfhard #jackdylangrazer #jackdylangrazeredit #eddieedit #eddiekaspbrak #eddiekaspbrakedit #eds #fack
2 hours agoDownload
I’m counting on my faith to move mountains! So many from my community are coming together tonight for a benefit concert to help with costs for surgery. The family friends who are planning it called it Moving Mountains. And boy, oh boy... I think they are! I’m feeling so humbled and blessed for so much love and support! ❤️🙏🏼 #fundraiser #benefitconcert #movingmountains #quote #faith #eds #ehlersdanlossyndrome #cci #aai #craniocervicalinstability #atlantoaxialinstability #midlandontario2 hours agoDownload
👠 #Pleaser para entrega inmediata! 👠
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💌 Info y pedidos por inbox 💌
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Si necesitas otro talle, podemos traerlo a pedido.
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Somos vendedores oficiales Pleaser, si querés cualquier otro modelo o talle lo traemos para vos desde la fabrica en EEUU o te lo enviamos a cualquier parte de EEUU si viajas ✈️
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#PleaserShoes #PolePleaser #ExoticPleaser #Poledance #ExoticPole #DragQueen #Drags #PoleDancer #EDS2 hours agoDownload
#eds extreme weather changes ☁️ survival kit! Which I have needed a lot the past week! How do you handle increased #jointpain due to changes in the weather?  #butyoudontlooksick2 hours agoDownload
19.10.2019
« Je ne pourrais pas », cette fameuse phrase... .
Nombreux sont ceux qui ont vu mes péripéties de ces deux dernières semaines...
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Arrêt de travail, j’ai loupé des séances de balnéothérapie, plusieurs séjours à l’hôpital...
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Enfin bref du coup difficile de cacher tout ça! .
J’ai eu plusieurs remarque cette semaine et j’en ai retenue deux.
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Kinésithérapeute:
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« Votre pathologie je ne pourrais pas, enfaite votre vie c’est de la douleur tout le temps »
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Dans ma tête - ah ah au moins il connaît la pathologie -
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Directrice du travail:
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« Ma pauvre, avec tout ce que tu as, je ne pourrais pas, ça ne dois vraiment pas être facile »
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Moi:
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« J’ai pas vraiment le choix »
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Directrice du travail:
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« Et quand je vois qu’il y en a qui se plaigne pour un rien et se mette en arrêt »
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Ce jour là je suis allée au travail juste après ma sortie de l’hôpital avec 40 de fièvre au travail (le soir même je suis de nouveau retournée à l’hôpital).
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#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndrome #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #Zebrastrong #Zebra #hEDS #vEDS #myEDSchallenge #healthcare #SpoonieLife #SpoonieGirl #invisibleillnesswarrior #warrior #invisibleillness #zebrawarrior #DazzleTogether #MayAwareness #butyoudontlooksick #chronicfatigue #EDSAwarenessmonth #Genetics #geneticIllness #warriorgirl2 hours agoDownload
Service dog buddies I need advice: I went on a last hurrah trip with my old car. We went to the mountains and climbed Mount Washington. I did some reflecting and thinking. With starting my full time job in the career field I want. I hope to expand and to reach toward my goals. But I am still trying to work on trying to find a service dog program. 
Its been very complicated and trying to come up with options due some issues with certain people and them wanting options. I am even looking at smaller dogs. But does anyone have any programs you reccomend. Please. (Not the service dog project though.) Thank you.  I dont have time to owner train. 
#servicedog #sdit #chronicillness #eds #edsservicedog #servicedogintraining #servicedogtrainer #chronicillness  #servicddoghelp2 hours agoDownload
Finally! Only been trying to get an appointment since Jan/Feb time! Thank fuck I've not long to wait! The lengths we have to go to when you are a zebra. Had I been 'normal' I would have had a routine appointment and not had to wait. The joys!

#hospitalappointment #zebralife #spoonielife #ehlersdanlossyndrome #EDS2 hours agoDownload
Les handicaps sont invisibles existent.
Ces dernières semaines ont été difficiles pour différentes raisons. J’ai connu des échecs et je me suis confrontée à mon plus grand handicap professionnel et personnel, plus fort que celui qui me coince dans des WC tordue de douleurs ou qui me menace de séjours en fauteuil roulant, pire encore que celui qui me fait tenir tous les jours les différentes parties éclatées de mon cœur à la superglue : ma douance.
J’ai mis 27 ans à accepter que j’avais peut-être un fonctionnement cérébral différent. 27 ans à pousser la porte d’une thérapeute spécialisée « pour savoir » s’il y avait une raison ou si ce n’était que moi. 28 ans pour comprendre et à peu près accepter que j’étais un « haut potentiel », « douée », « giftedbrain », bref, pas tout à fait normale. Je ne suis ni plus, ni moins intelligente, mais c’est mon handicap cognitif à moi. Mon cerveau fonctionne différemment, à une vitesse parfois accélérée et d’autres fois bien ralentie, sur des canaux différents. C’est fatiguant de toujours s’adapter à la fréquence et c’est fatiguant de fonctionner différemment. Épuisant de chercher à éviter le malentendu en permanence, d’essayer de trouver sa place dans une communauté, de savoir qui l’on est au milieu de ces années d’efforts d’adaptation. Épuisant de se battre en permanence pour ne pas envoyer une fausse image, épuisant d’échouer. Épuisant de voir souvent se répéter les mêmes scénarios et de se sentir impuissant et surtout coupable de ne pas savoir les endiguer. Épuisant de mettre de l’affect là où les autres ne le font pas, d’avoir mal pour une phrase pas claire et de ne jamais l’être soi-même.
Cette semaine, j’ai rempli une reconnaissance de travailleur handicapé pour mes handicaps physiques. Et j’ai aussi beaucoup pleuré. Parce que j’en ai marre d’être une exception statistique, Parce que mon premier handicap, c’est mon cerveau qui ne fonctionne pas tout à fait comme celui de la majorité des gens, tout comme celui des dyslexiques n’arrive pas à lire. Et ce handicap là ne se voit pas, ne se comprend pas et est même perçu comme un cadeau alors qu’il est mon fardeau.
Mais cette liste de choses qui m’affectent ne me résume pas.3 hours agoDownload
I’ve hidden my first #edszebrarocks in #skegness #eds #edsuk #awareness #chronicillness #ehlersdanlos #zebras Can you find it?? Clue: POST a picture of you find it... Then go to the Facebook page ‘edszebrarocks’ and post a picture! Happy hunting 😊😊3 hours agoDownload
Идеи - это круто. А их реализация - вообще огонь🎉. Не бойтесь, учитесь, пробуйте, набивайте шишки -  результат вас будет вдохновлять и мотивировать 🥳

Благодарю @eds_ua за приглашение выступить с @nadiyaverbitskaya в рамках лектория "Шлях ідеї" на выставке @dlt_by_kiff, Вы супер! 😚😘😘🥳🥳❤3 hours agoDownload
Connaissez-vous les orthèses ? C'est un appareillage qui compense une fonction absente ou déficitaire, assiste une structure articulaire ou musculaire, stabilise un segment corporel pendant une phase de réadaptation ou de repos. Dans le syndrome d'Ehlers-Danlos, elles sont utiles pour soulager les douleurs et aider les articulations à ne pas se luxer. Dans mon cas, ce sont mes genoux qui prennent le plus cher, et me font très régulièrement souffrir. Cette semaine était insupportable à ce niveau là, j'ai donc décidé d'acheter une orthèse. Le plus grand avantage de celle-ci est qu'elle peut être facilement  portée, et assez discrètement, sous un jeans 👌🏻 et avec, on peut marcher, faire d'y sport, etc. 
Vous êtes plusieurs à m'avoir dit avoir la même, pour quelles raisons les utilisez-vous ? 🤔

#ehlersdanlosawareness #ehlersdanlos #ehlersdanlossyndrome #sed #eds #belgianblogger #blogueusebelge #lifestyleblogger #sportlife #healthylifestyle #enjoylife #belgium #orthese #painmanagement #chronicillness #chronicillnessawareness #chronicdisease3 hours agoDownload
Connaissez-vous les orthèses ? C'est un appareillage qui compense une fonction absente ou déficitaire, assiste une structure articulaire ou musculaire, stabilise un segment corporel pendant une phase de réadaptation ou de repos. Dans le syndrome d'Ehlers-Danlos, elles sont utiles pour soulager les douleurs et aider les articulations à ne pas se luxer. Dans mon cas, ce sont mes genoux qui prennent le plus cher, et me font très régulièrement souffrir. Cette semaine était insupportable à ce niveau là, j'ai donc décidé d'acheter une orthèse. Le plus grand avantage de celle-ci est qu'elle peut être facilement  portée, et assez discrètement, sous un jeans 👌🏻 et avec, on peut marcher, faire d'y sport, etc. 
Vous êtes plusieurs à m'avoir dit avoir la même, pour quelles raisons les utilisez-vous ? 🤔

#ehlersdanlosawareness #ehlersdanlos #ehlersdanlossyndrome #sed #eds #belgianblogger #blogueusebelge #lifestyleblogger #sportlife #healthylifestyle #enjoylife #belgium #orthese #painmanagement #chronicillness #chronicillnessawareness #chronicdisease3 hours agoDownload
Connaissez-vous les orthèses ? C'est un appareillage qui compense une fonction absente ou déficitaire, assiste une structure articulaire ou musculaire, stabilise un segment corporel pendant une phase de réadaptation ou de repos. Dans le syndrome d'Ehlers-Danlos, elles sont utiles pour soulager les douleurs et aider les articulations à ne pas se luxer. Dans mon cas, ce sont mes genoux qui prennent le plus cher, et me font très régulièrement souffrir. Cette semaine était insupportable à ce niveau là, j'ai donc décidé d'acheter une orthèse. Le plus grand avantage de celle-ci est qu'elle peut être facilement  portée, et assez discrètement, sous un jeans 👌🏻 et avec, on peut marcher, faire d'y sport, etc. 
Vous êtes plusieurs à m'avoir dit avoir la même, pour quelles raisons les utilisez-vous ? 🤔

#ehlersdanlosawareness #ehlersdanlos #ehlersdanlossyndrome #sed #eds #belgianblogger #blogueusebelge #lifestyleblogger #sportlife #healthylifestyle #enjoylife #belgium #orthese #painmanagement #chronicillness #chronicillnessawareness #chronicdisease3 hours agoDownload
Connaissez-vous les orthèses ? C'est un appareillage qui compense une fonction absente ou déficitaire, assiste une structure articulaire ou musculaire, stabilise un segment corporel pendant une phase de réadaptation ou de repos. Dans le syndrome d'Ehlers-Danlos, elles sont utiles pour soulager les douleurs et aider les articulations à ne pas se luxer. Dans mon cas, ce sont mes genoux qui prennent le plus cher, et me font très régulièrement souffrir. Cette semaine était insupportable à ce niveau là, j'ai donc décidé d'acheter une orthèse. Le plus grand avantage de celle-ci est qu'elle peut être facilement  portée, et assez discrètement, sous un jeans 👌🏻 et avec, on peut marcher, faire d'y sport, etc. 
Vous êtes plusieurs à m'avoir dit avoir la même, pour quelles raisons les utilisez-vous ? 🤔

#ehlersdanlosawareness #ehlersdanlos #ehlersdanlossyndrome #sed #eds #belgianblogger #blogueusebelge #lifestyleblogger #sportlife #healthylifestyle #enjoylife #belgium #orthese #painmanagement #chronicillness #chronicillnessawareness #chronicdisease3 hours agoDownload
Day 19: Embrace those mobility aids. #potsuk #potsukchallenge @potsuk 
With the help of my good pal, we managed to get this into the flatter practice area of our archery club. It makes a good bow stand when I'm not sitting in it! 
Doesn't it annoy you that standard rollators aren't built for off-road but for a more aged population? To enjoy outdoor activities the same as anyone else, I need an expensive all-terrain one.
I will not be deterred... watch this space!

#EDS #hEDS #ehlersdanlossyndrome #hypermobilitysyndrome 
#osteopenia #spinefracture3 hours agoDownload
Lunch was a mixed berry, mango and kale smoothie with my new smoothie maker 👌👌👌 love being able to make smoothies 
#smoothie #smoothiemaker #drink #fruit #healthy #eupd #edfighter #depression #eds3 hours agoDownload
#tb to happier days after I'd just finished a delicious burger after arriving on the festival's campsite last year. Used to always have cereal for breakfast there, then eat a vast number of festival foods, and end the day with mead! Haven't had any of that when I went this year.
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#ed #eds #festival #eatingdisorder #losingweight #weightloss #slimmingworld #fitness #gothic #mead #wine #alcohol #scaredoffood #foodisbad #nofoodforme #fasting3 hours agoDownload
100% gay •
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#reddie #richie #eddie #eddietozier #richiekaspbrak #chee #bubba #trashmouth #eds #eddiespaghetti #wheezy #loser #lover #loserlover #IT #IT2 #stanleyuris #bill #billiam #stan #mikehanlon #beverlymarsh #losersclub #gay #gaypanic #rainbow #gayrainbow3 hours agoDownload
So October is Dysautonomia awareness month! Dysautonomia is dysfunction in the autonomic nervous system and there are many different types and symptoms. POTS affects my life everyday but i am able to manage it! -
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#gastroparesisawareness
#feedingtube #gastroparesis #rarediseases #chronicillness #smasyndrome #gjtube #inspiration #superiormesentaricarterysyndrome #tubie #dysautonomia #pots #eds #ehlersdanlossyndrome #hypermobility #raynauds #raynaudsphenonomenon #gastricstimulatorsurgery #gastricstimulator #chronicpain  #dance #invisibleillness3 hours agoDownload
🍁🍁It’s Invisible Disabilities Week. 🌊🌊
Can you see what’s happening here? 
I am walking in the shallows of the Russian River.
I can walk in water but I can’t swim.
While I was never a strong swimmer, I’ve swum and snorkeled in oceans all over the world. 
Because of Hypermobile Ehlers-Danlos Syndrome’s affect on my connective tissue my spine isn’t stable enough to swim at this point.
It’s hard to admit, in the cult of fitness that surrounds me, I am ashamed of this inability to swim, but this is internalized ableism talking and I am unlearning this.
I love walking in water, toe-deep or waist-deep, in a swimming pool, in a river, in our pond, in the ocean, it brings me joy.
I can walk in water but I can’t swim.
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#InvisibleDisabilitiesWeek #Gratitude #EDS #hEDS #HSD #POTS #MCAS #Scoliosis #Zebras #Epilepsy #ChronicIllness #InvisibleDisability #MendocinoCA #SantaRosaCA #SupportGroup 
#ChronicLife #MettleOn3 hours agoDownload
Richie Kaspbrak Eddie Tozier
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#richietozier #richiekaspbrak #eddiekaspbrak #eddietozier #chee #bubba #trashmouth #eds #eddiespaghetti #wheezy #loser #lover #IT #IT2 #stanleyuris #stanuris #williamdenbrough #billdenbrough #mikehanlon #ben #beverlymarsh #bev3 hours agoDownload
#NationalLoveYourBodyDay •
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It doesn’t matter what your body looks like. It doesn’t matter if you’re big, small, medium, tall, short, disabled, abled, male, female, gender neutral, are bullied, have scars, stretchmarks, spots, vitiligo, whatever your skin colour is or whatever else you may be self conscious about that I haven’t mentioned. YOUR BODY SHOULD NOT BE PUNISHED. EveryBODY should be respected, celebrated and loved. Something which can be incredibly difficult with a chronic illness as it often feels as though your body is betraying you! But it still does need some love and respect, if at all possible ❤️ •
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This is a little throwback to @love_disfigure ‘s protest at #LondonFashionWEAK 2019 - as all bodies deserve to be on the catwalk. All bodies should be included - and all designers should know that •
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#EhlersDanlosSyndrome #EDS #Stoma #Ileostomy #Ostomy #OstomyAwareness #ChronicIllness #Ostomate #InvisibleDisability #Awareness #InvisibleIllness #BodyPositivity #BodyConfidence #LoveYourBody #EffYourBeautyStandards #Influencer #LoveAnyBODY #EveryBODY #EmbraceYourBody #SelfLove #SelfConfidence #MentalHealth #Positivity #Diversity #Empowerment #EndTheStigma #BodyPositiveInfluencer3 hours agoDownload
Back to the roots 👌🏻 #calikaaa #opel #calibraturbo4x4 #calibra #c20let #eds #wesseling #50389Asozial #ToMeKoViČ-Performance3 hours agoDownload
People who think that going to the doctor once can fix everything’s wrong with you is... (fill in the blank, lemme know in the comments!)
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My answer is: LUCKY!
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#chronicpain #chronicpainwarrior #chronicillness #chronicillnesswarrior #autoimmunedisease #autoimmunewarrior #spoonie #arthritis #juvenilearthritis #rheumatoidarthritis #rawarrior #lupus #sjogrens #chrons #lymedisease #fibromyalgia #pots #pcos #eds #ibs #ulcerativecolitis #multiplesclerosis #invisibleillness #dysautonomia #endometriosis #endowarrior #dailymemes #motivation #weekendvibes3 hours agoDownload
Fresh cut got me like 😍. 7 months ago my mom was diagnosed with cancer. 3 weeks ago I had my 4th brain surgery in 10 years... which was also my 5th surgery in a YEAR. In the midst of all of the madness there has been family heartbreak, uncertainty, autism, adhd, and everything else life has thrown our way. I was suffocating every freaking day. I woke up yesterday feeling hope for the first time in months. I remembered my journey is one day at a time and each day is a gift. I exhaled all the negativity and then I literally shaved it out of my life. Literally. A thousand pounds of negativity and doubt came off my shoulders. So did my hair. I feel amazing. #doyou #chiari #brainsurgery #cancer #sct #lymphoma #eds #avascularnecrosis #asd #adhd #mama #fearless #undercut #pixiecut3 hours agoDownload
Fresh cut got me like 😍. 7 months ago my mom was diagnosed with cancer. 3 weeks ago I had my 4th brain surgery in 10 years... which was also my 5th surgery in a YEAR. In the midst of all of the madness there has been family heartbreak, uncertainty, autism, adhd, and everything else life has thrown our way. I was suffocating every freaking day. I woke up yesterday feeling hope for the first time in months. I remembered my journey is one day at a time and each day is a gift. I exhaled all the negativity and then I literally shaved it out of my life. Literally. A thousand pounds of negativity and doubt came off my shoulders. So did my hair. I feel amazing. #doyou #chiari #brainsurgery #cancer #sct #lymphoma #eds #avascularnecrosis #asd #adhd #mama #fearless #undercut #pixiecut3 hours agoDownload
Fresh cut got me like 😍. 7 months ago my mom was diagnosed with cancer. 3 weeks ago I had my 4th brain surgery in 10 years... which was also my 5th surgery in a YEAR. In the midst of all of the madness there has been family heartbreak, uncertainty, autism, adhd, and everything else life has thrown our way. I was suffocating every freaking day. I woke up yesterday feeling hope for the first time in months. I remembered my journey is one day at a time and each day is a gift. I exhaled all the negativity and then I literally shaved it out of my life. Literally. A thousand pounds of negativity and doubt came off my shoulders. So did my hair. I feel amazing. #doyou #chiari #brainsurgery #cancer #sct #lymphoma #eds #avascularnecrosis #asd #adhd #mama #fearless #undercut #pixiecut3 hours agoDownload
My back is killing me but I am killing it .
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#selflove #selfie #camo #thiccgirl #thiccbitch #purplehair #selfcare #bodypositive #bodypositivity #bodyposi #fuckdietculture #selflovejourney #loveyourself #selfgrowth #bedrecovery #bpd #spoonie #fibromyalgia #eds #heds #eupd #spoonielife3 hours agoDownload
A fab first virtual meeting in #hull today! Thank you to #Edsuk members for joining us and sarah for hosting. #eds #ehlersdanlos #ezraontour #chronicillness4 hours agoDownload
Elize had geluk.. ze mocht die avond in een heeeel groot bad.. 💦 maar... ik zou geen hulphondje zijn als ik niet ‘effetjes’ zou checken of het bad wel groot en diep genoeg is... 😁😋 Ehm.. goedgekeurd hoor Bianca en Elize! 🛁 > Als jullie het niet erg vinden ga ik er wel heeeel snel vandoor.. zoefff... veel plezier hoor! 🐾 >4 hours agoDownload
Elize had geluk.. ze mocht die avond in een heeeel groot bad.. 💦 maar... ik zou geen hulphondje zijn als ik niet ‘effetjes’ zou checken of het bad wel groot en diep genoeg is... 😁😋 Ehm.. goedgekeurd hoor Bianca en Elize! 🛁 > Als jullie het niet erg vinden ga ik er wel heeeel snel vandoor.. zoefff... veel plezier hoor! 🐾 >4 hours agoDownload
Elize had geluk.. ze mocht die avond in een heeeel groot bad.. 💦 maar... ik zou geen hulphondje zijn als ik niet ‘effetjes’ zou checken of het bad wel groot en diep genoeg is... 😁😋 Ehm.. goedgekeurd hoor Bianca en Elize! 🛁 > Als jullie het niet erg vinden ga ik er wel heeeel snel vandoor.. zoefff... veel plezier hoor! 🐾 >4 hours agoDownload
***happiness***⁣
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I am doing a new video soon about what constitutes happiness! Specifically how to be happy when you have a chronic illness! And also, the pressure some people feel to be ‘okay’ and ‘happy’ for other people, even when they are very much not okay inside. ⁣
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I would love it if you could participate! Please leave a comment with what makes you happy! It can be anything no matter how big or small! We’re in this community together and need to help one another! 🦋 ⁣
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🥄much love and spoons to you all 🥄4 hours agoDownload
#edsawareness necklaces handcrafted with love and patience. Show your stripes with these cute necklaces🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓#dazzletogether #autoimmune #spoonie #chronicallyfabulous #chronicallyill #chronicmigraine #chronicfatigue #zebra #edsawareness #lupus #dysautonomia #autoimmunedisease #pots #EhlersDanlos #EDS #zebraplush #zebrawarrior #dazzle #EhlersDanlosSyndromes #zebrastrong #hEDS #MALS4 hours agoDownload
#edsawareness necklaces handcrafted with love and patience. Show your stripes with these cute necklaces🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓#dazzletogether #autoimmune #spoonie #chronicallyfabulous #chronicallyill #chronicmigraine #chronicfatigue #zebra #edsawareness #lupus #dysautonomia #autoimmunedisease #pots #EhlersDanlos #EDS #zebraplush #zebrawarrior #dazzle #EhlersDanlosSyndromes #zebrastrong #hEDS #MALS4 hours agoDownload
#dysautonomiaawareness necklaces handcrafted with love and detail💙 These guys are crafted with heart and love. Your chose of turquoise necklace with #pots handpainted or blank shimmer #dysautonomia necklace💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙 #dazzletogether #autoimmune #spoonie #chronicallyfabulous #chronicallyill #chronicmigraine #chronicfatigue #zebra #edsawareness #lupus #dysautonomia #autoimmunedisease #pots #EhlersDanlos #EDS #zebraplush #zebrawarrior #dazzle #EhlersDanlosSyndromes #zebrastrong #hEDS #MALS4 hours agoDownload
#dysautonomiaawareness necklaces handcrafted with love and detail💙 These guys are crafted with heart and love. Your chose of turquoise necklace with #pots handpainted or blank shimmer #dysautonomia necklace💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙 #dazzletogether #autoimmune #spoonie #chronicallyfabulous #chronicallyill #chronicmigraine #chronicfatigue #zebra #edsawareness #lupus #dysautonomia #autoimmunedisease #pots #EhlersDanlos #EDS #zebraplush #zebrawarrior #dazzle #EhlersDanlosSyndromes #zebrastrong #hEDS #MALS4 hours agoDownload
This is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.⁠
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There are thirteen defined types of EDS, as well as a number of mutations that fall outside the current system. ⁠
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There's no cure for EDS, but the symptoms can often be treated and managed.⁠
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Many people with an EDS have soft, velvety skin that is highly stretchy (elastic) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring.  The different types of EDS all come with additional signs and symptoms. ⁠
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An individual’s experience with an EDS is their own, and may not necessarily be the same as another person’s experience. Diagnostic criteria are meant solely to distinguish an EDS from other connective tissue disorders, and there are many more possible symptoms for each EDS than there are criteria.⁠
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At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. Recent clinical experience suggests that Ehlers-Danlos syndrome may be more common. The conditions are known to affect both males and females of all racial and ethnic backgrounds.⁠ It's natural to feel overwhelmed when you’re diagnosed with a chronic condition, it can affect many parts of your life. It’s important to acknowledge these feelings and get help if they start affecting your daily life. Your doctors will be able to help with information about support. You might also find it helpful to find a Peer Support Group and speak to other people who know what you’re going through.⁠
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#EhlersDanlosSyndrome #EDS #Chiari #IHH #Lupus #Fibromyalgia #Migraines #ChronicIllnessWarrior #ItsOkayNotToBeOkay #AutoimmuneDisease #ChronicIllness #Bipolar #Dysautonomia #ButYouDontLookSick #Endometriosis #HashimotosDisease #Spoonie #LymeDisease #Arthritis #Spondyloarthritis #Awareness #Depression #Anxiety #Insomnia #Sick #StarvingForACure #InvisiblyChronicallyIll4 hours agoDownload
『 behind the scenes 』
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#benhanscom #billhader #beverlymarsh #mikehanlon #stanleyuris #billdenbrough #georgiedenbrough #phonto #richietozier #eddiekasprak #wyattoleff #finnwolfhard #jackdylangrazer #reddie #eds #billverly #benverly #stanbrough #jamesransone #eddieandrichie #pennywise #flutelady #itchaptertwo #it #ahsmurderhouse #billskarsgard #henrybowers #thebarrens #beproud4 hours agoDownload
『 behind the scenes 』
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#benhanscom #billhader #beverlymarsh #mikehanlon #stanleyuris #billdenbrough #georgiedenbrough #phonto #richietozier #eddiekasprak #wyattoleff #finnwolfhard #jackdylangrazer #reddie #eds #billverly #benverly #stanbrough #jamesransone #eddieandrichie #pennywise #flutelady #itchaptertwo #it #ahsmurderhouse #billskarsgard #henrybowers #thebarrens #beproud4 hours agoDownload
『 behind the scenes 』
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#benhanscom #billhader #beverlymarsh #mikehanlon #stanleyuris #billdenbrough #georgiedenbrough #phonto #richietozier #eddiekasprak #wyattoleff #finnwolfhard #jackdylangrazer #reddie #eds #billverly #benverly #stanbrough #jamesransone #eddieandrichie #pennywise #flutelady #itchaptertwo #it #ahsmurderhouse #billskarsgard #henrybowers #thebarrens #beproud4 hours agoDownload
『 behind the scenes 』
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#benhanscom #billhader #beverlymarsh #mikehanlon #stanleyuris #billdenbrough #georgiedenbrough #phonto #richietozier #eddiekasprak #wyattoleff #finnwolfhard #jackdylangrazer #reddie #eds #billverly #benverly #stanbrough #jamesransone #eddieandrichie #pennywise #flutelady #itchaptertwo #it #ahsmurderhouse #billskarsgard #henrybowers #thebarrens #beproud4 hours agoDownload
So Update time...
On Tuesday of this week I was scheduled to get my IUD taken out and replaced with a new super small one and to get my dangler GJ replaced to a GJ button. Since I was having both they wanted me under General Anesthesia because of the complexity of my body. 
So I went under and boy did I wake up very unhappy and disappointed with the tube situation. I woke with just a new dangler because they didn’t order the GJ button in the stoma length I needed. Ugh!! I have had to remind my self a lot when I have gotten frustrated that at least I am getting nutrition but it still disappoints me and the dangler pisses me off even more. 
Then the IUD came and boy was that entertainment I heard. First they went up to grab the old one because with in days it had lost position and was making my Endo symptoms SO MUCH WORSE. Anyways, my Gyno went up to grab and the strings were totally gone. They had to go get all of the tool to get it out and thank god they did she said. The string had shrunk and twisted and all sorts of crazy stuff it should not have. The first IUD she cut the strings super long because I and very tall and long so she wanted to make sure and after placement number one in August she felt the strings then like days later she couldn’t. 
Now I have a smaller IUD in to see if that is less traumatic to my uterus. If it is great and if it isn’t the. I am screwed and will have to have surgery. 
#chronicillness #chronicpain #endometriosis #tubefed #feedingtube #GJtube #chronic #photography #nature #yellow #flower #florida #eds #ehlersdanlossyndrome #gastroparesis #mcas #crps #pots #amps #migraines #dysmotility4 hours agoDownload
#MastCellActivationDisorder #MastCell #MastCelldisease #ZebraStrong #EDS #hEDS #EhlersDanlos #Hypermobility #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #POTSAwareness #InvisibleIllness #ChronicPain #LivingwithPOTS #ChronicallyIll #ChronicFatigue #CFS #POTS #Spoonie #MakeNoiseForTurquoise #Potsie #butyoudontlooksick #dysautonomiacourage #Autoimmunedisease #raiseawareness #raredisease #healthadvocate4 hours agoDownload
Update: Life got a little wild so I haven’t been on here a lot, but I’m back baby! 
Health wise things have been going okayish. I finally got to see a cardiologist here in North Carolina and it went fairly well! The doctor I went to see apparently only takes “special” cases so ig I’m special😂. So they checked the records of my heart monitor, did an EKG, and checked up on my meds. What was super cool was that the doctor listened to me and seemed genuinely interested and concerned with my health. He asked all kinds of questions to get an entire history. He also recommended an EDS specialist which I’m super excited for!! Next was the neurologist. After calling 9 TIMES, I finally got in to see a neurologist. This doctor was really good too, he asked lots of questions, and listened to everything that I said. He ordered a special scan to look at my brain and the blood vessels in my neck, to make sure everything is okay. He gave me rescue headache med for now, and is putting me on a once a month injection to try to keep my migraines at bay. 
Mental health wise things have been pretty rough ngl. The anniversary of a friends suicide is coming up and it’s a really hard time of the year. Late October/November is pretty hard for me. Both times I went in a mental hospital it was around that time of the year. This time of year brings back a lot of memories and feelings so it’s a tough time for me. I’ve been planning for this though, I have a list of things to help me get through tough times including: speaking to friends/family, drawing, singing, journaling, and doing things to distract myself. 
That was a quick update, I’ll go more in depth about each part later on, but that’s basically what’s been going on w me.4 hours agoDownload
This week is Total/Home Parental (TPN/HPN) Awareness Week. I have been on HPN for almost 3 years now. Before becoming ill, I never knew anything about it; so it’s important to share and spread awareness. 🎗
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So what exactly is it and how does one do this treatment at home? Swipe through the pictures of this post to learn about this magic IV bag of nutrition that saved my life and keeps me going! 💪🏼
#hpnawarenessweek #tpnawarenessweek15 hours agoDownload
This week is Total/Home Parental (TPN/HPN) Awareness Week. I have been on HPN for almost 3 years now. Before becoming ill, I never knew anything about it; so it’s important to share and spread awareness. 🎗
•
So what exactly is it and how does one do this treatment at home? Swipe through the pictures of this post to learn about this magic IV bag of nutrition that saved my life and keeps me going! 💪🏼
#hpnawarenessweek #tpnawarenessweek15 hours agoDownload
This week is Total/Home Parental (TPN/HPN) Awareness Week. I have been on HPN for almost 3 years now. Before becoming ill, I never knew anything about it; so it’s important to share and spread awareness. 🎗
•
So what exactly is it and how does one do this treatment at home? Swipe through the pictures of this post to learn about this magic IV bag of nutrition that saved my life and keeps me going! 💪🏼
#hpnawarenessweek #tpnawarenessweek15 hours agoDownload
This week is Total/Home Parental (TPN/HPN) Awareness Week. I have been on HPN for almost 3 years now. Before becoming ill, I never knew anything about it; so it’s important to share and spread awareness. 🎗
•
So what exactly is it and how does one do this treatment at home? Swipe through the pictures of this post to learn about this magic IV bag of nutrition that saved my life and keeps me going! 💪🏼
#hpnawarenessweek #tpnawarenessweek15 hours agoDownload
This week is Total/Home Parental (TPN/HPN) Awareness Week. I have been on HPN for almost 3 years now. Before becoming ill, I never knew anything about it; so it’s important to share and spread awareness. 🎗
•
So what exactly is it and how does one do this treatment at home? Swipe through the pictures of this post to learn about this magic IV bag of nutrition that saved my life and keeps me going! 💪🏼
#hpnawarenessweek #tpnawarenessweek15 hours agoDownload
Learning to appreciate the good moments when they are right in front of you. I’ve been having a rough month and I’ve been trying to look back and smile. This photo reminds me of a time where I pushed through and was feeling awful. I had just started a vacation, having arrived the night before. I had been feeling feverish all day and was completely exhausted. We were going to a show and I was freezing even though it was 90+ out, I had no sweater with me so I literally used the blanket I bought on the plane as a shawl. My boyfriend and I joke about this all the time now because it actually looked half decent. I’m trying to force myself to look at the positive moments during these rough times. There are bright spots and fun moments that can help drive us in the future. Make sure that you recognize them and appreciate them, because you don’t know when you’ll get the next chance to feel that way again. My shortness of breath is still a major issue and I can’t seem to get it under control. I’m going to have to figure out how to manage this chronic bronchitis and it makes me anxious going into cold and flu season. My POTS, which has really been an issue for me in the past, something I barely related to, is now becoming problematic and more noticeable. I’m rolling with the punches but I’m feeling super fatigued. I will say I’m really excited that it’s becoming cooler and we’re reaching the holidays, my favorite time of the year. #eds #chronicallyill #mcas #chronicillnessblogger #mastcellactivationsyndrome #chronicillnesswarrior #blogger #ehlersdanlos #ehlersdanlossyndrome #chronicpain #chronicmigraine #chronicillness #invisibleillness #medicalzebra #dysautonomia #chronicpainawareness #invisibleillnessawareness #invisibleillnesswarrior #mastcell #mastcelldisease #spoonie #spoonielife #lungdisease #bronchitis #chronicbronchitis #potsie #butyoudontlooksick #posturalorthostatictachycardiasyndrome #pots #mastcellactivationdisorder3 days agoDownload