#ehlersdanlos

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6+ years ago, before the progression of my disability, I had a boots and chucks collection that was pretty badass. It rivaled few. I was never one to spend money on clothes or accessories or makeup, but damn did I love a good pair of studded boots. They were the main pillar of my outfit and expression. Autumn made me so so excited bc, even though I wore my boots year round, autumn was. the. season. . Fast forward slowly as my disability took over. The first to go were boots. Then sneakers. Then slides. Then sandals with a thick band. I can only wear flip flops now. Even in the snow. FLIP FLOPS. Year-round. Every day. I never wore those even when I could wear whatever I wanted. It's just not my style. But thanks to my erythromelalgia, severe contracture and disfigurements; I can't fit in them, can't have material touching my feet, and they trip me when I try to get from A to B without my chair. . Today I'm being honest about the sadness I have about this loss. For 6 years I've been bottling up all the pain and sadness my disability has brought to me. It's in part why I made this account. To finally be HONEST. To be VULNERABLE. To be AUTHENTIC..... real.....transparent....whole. To stop wrapping everything up in a pretty little inspirational bow and making it palatable to listeners. It gets hard man. . So here's my heart, on yknow, boots ;) You never knew they could be such a weak spot huh? ;) . 👞♿👟 . . . . . . . #disability #disabled #chronicillness #chronicpain #ehlersdanlos #ehlersdanlossyndrome #EDS #hEDS #hypermobility #hypermobile #HSD #dysautonomia #POTS #mastcell #mastcellactivation #MCAS #MCAD #erythromelalgia #manonfiresyndrome #contracture #disfigurement #spoonie #spoonielife #zebrastrong #chronicillnesswarrior #shoes #boots #disabilityfashion
Sometimes people walk away from you not because you’ve done something bad. But because they don’t feel worthy of the good you have to offer.
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Currently pet sitting this cutie! What a wonderful job, Netflix, chill and take care of Kitteh 😂! Nasty weather here in Winterpeg, but lucky for me I don’t have to go outside for 3 days. Ran out of cbd oil, and I’m definitely feeling it. Downtown abbey, tea with manuka honey, robax, and long magnesium salt baths are keeping me alive though, not to mention the most cuddly cat on earth lol. Animals are such a healing comfort. I really believe cats and dogs should be mandatory in hospitals and palliative care, even old folks homes! Something I’ve always been passionate about is introducing animals into prison, under strict supervision of course, look it up on YouTube, the stories of hardened criminals breaking down in tears is beyond moving. #animalsarehealing #infj #petsitting #catsofinstagram #winterpeg #downtonabbey #writersofinstagram #chronicillness #ehlersdanlos #edsawareness #fibromyalgia #cats #blackcat #netflixandchill #rainyday #introvert #artistsoninstagram
As time goes on, my legs become weaker due to my joints being “loosey-goosey” as the doctors call it (ok it’s just me who calls it that). I do physio and try to strengthen the muscles around my joints, but I’m on a regular schedule of exercising, re-injuring something, waiting to recover enough to exercise again, and then right back to the start. In a couple years I have gone from no mobility aids, to sometimes one, to almost always one, and now to sometimes two. I’m told I rock these mobility aids (which I totally do let’s be honest💁🏻‍♀️) but it really takes a lot of practice to be comfortable with them and to get used to functioning with them by my side all the time. Initially I didn’t really break out the two crutches unless my back was swollen af or my bestie was over and wanted to play around on them. But I’ve been trying them out more around the house lately in preparation for the days when my bones feel like they’ve been replaced with jello (it’s totally fine don’t be alarmed)(haha jk it’s awful). It’s been quite a learning experience figuring out how to use both crutches while doing things involving my arms. I usually get by using one and holding things with my other arm but I know I need to learn these skills on both crutches for the days when my options are either: A) use both crutches or B) lay in bed forever and ever until the end of time (realistically when Matt gets home from work & not the actual end of time). I’m a strong independent woman so I want to be able to get around my house while Matt is at work. So I practice with both. Sometimes my crutches are very helpful! Sometimes they frustrate me. And sometimes Matt finds them abandoned in weird places throughout the house where I’ve probably sighed dramatically and dropped them because my plate of cookies seemed more important. He then returns them to me and reminds me that I bought them for using, and they can’t help me when I’m in our room and they’re nestled in the empty space between our fridge and the stove. I KNOW THAT, MATTHEW. But cookies! Anywho, the struggle is real. Mobility aids are awesome and I bow down to them but also this is a huge ass learning curve & boy does it take practice.
"I CAN HELP YOU". After my appt w/ the neurosurgeon I'm in the lobby thinking, "Don't ball your eyes out bc there are other people around". I'm relieved, filled w/ a little HOPE, but also filled w/ anxiety. This is what is proposed; the Dr will remove all the hardware from my skull-L2 bc the screws/rods in me now aren’t strong enough to hold me up since I'm tall & skulls aren't supposed to move like mine is. Currently there are multiple screw & rod issues. How do we get my spine aligned? Basically he will separate my spine. A vertebrae will be removed so he can bend my spine back into anatomical alignment. After that, stronger rods/screws will be placed all at once. That's approx. 88% of my spine being worked on at once; 21 vertebrae & my skull. I'm horrified; as he said it's a huge surgery. The benefits outweigh the scary risks. My posture is worse than I thought. I'm bent in a C shape. My torso is shifted L. My head is turned & shifted L. It will get worse, as it has been. Definitely explains the magnitude of symptoms. The Dr. said my lumbar & SI joints must be causing me a ton of pain from holding myself back so I can see forward. Validation. I don't have much else to say. That's the short & sweet condensed version. A lot to think, process & digest moving forward. I'm thankful, I believe things will get better. This will be surgery number 35. Permission to share. I now know there IS somebody out there w/ a spine similar to mine. That's the beauty of social media. It can connect people from all walks of life. * * * #ehlersdanlos #ehlersdanlossyndrome #mayoclinic #spinesurgery #neurosurgery #invisibleillness #chronicillness #strong #anxiety #spooniestrong #spine #surgeey #butyoudontlooksick #chronicpain #fusion #scoliosis #instability #hypermobilitysyndrome #surgerylife #hospitallife #medical #believe #blessed #allthingsarepossible #neurology #spoonielife #doctor #scaredtodeath #healthjourney #survivor
Some days you feel invincible and others you just make it through. You look for the lessons in the struggles, try hard to figure out what you might be missing so you can stop repeating it and move on to the next chapter. Some might have less struggles and trauma, just remember the strength you have gained through your scars and try to find the blessing. 💫When I can’t see it in the moment I can always find love from my girls to help get me through. #lovethem ❤ . . #furmomlife #perservere #nosuchthingasperfect #iknowwhereicamefrom #ehlersdanlos #invisableillness #potssyndrome #anxietyawareness #countingblessings #strongwoman #zebrastrong #nevergiveup 👊
Mama @shannonputnamcooper helped me soak, then clean and resplint my hand. Incision looks great! #thanksmom #myzebrastripes #surgery11 #surgerynumber11 “Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.” (~Unknown) left thumb MCP (metacarpophalangeal joint) joint fusion surgery. #mcpfusion #mcpinjury #mcpjointfusion #mcpjointsurgery #mcpjoint #mcp #metacarpalphalangealjoints #thumbfusion #stabilizethatshit #ehlersdanlos #ehlersdanlostype3 #eds3 #edstype3 #spoonie #ehlersdanlossyndrome #surgeryrecovery #chronicallyawesome #zebrastrong #zebrawarrior #scarsaretattooswithbetterstories #scarsarebeautiful #rockyourscars
Had a great time at Michelle’s baby shower!!! 🍼🎈🎀🎁💗
Sweater weather 😊 • • • • Foundation : @toofaced Born this way - Mocha // Cream Contour : @lagirlcosmetics - Chestnut // Powder Contour : @urbandecaycosmetics - NakedSkin Shapeshifter Palette // Concealer : @narsissist - Biscuit // Blush : @anastasiabeverlyhills - Berry Adore // Brows : @itcosmetics // Eyeliner : @fentybeauty - Flyliner // Lips : @lancomeofficial - Pure Color Envy Seductive Honey • • • • • • • • • • • • • • #fall #fashion #makeup #influencer #settingthestandard #weekend #saturday #night #photography #instaphoto #ehlersdanlos #ehlersdanlossyndrome #inmyskiniwin #loveyourbody #loveyourlines #selflove #beyou #bebeautiful #blessed #beauty #beautiful #perfectlyimperfect #happy #real #ilovemybody #inspire #embrace #goodvibes #goodlife #selflove #bodypositive
well the verdict is in, the reason I’ve been having such intense pain in my right knee (as well as the nearly constant popping-and-locking) and an extremely weak leg altogether as a result of that, is because at some point in the last year, I completely tore my ACL and one meniscus. And I’ve been walking around like this for almost a year. So that was pretty surprising, since they were only looking for a torn meniscus. Any kind of repair surgery would be pretty much pointless for someone like me who has EDS, so I’m restarting physical therapy in the hopes of not repairing my ACL but getting the muscles in and around my knee strong enough so that I don’t need an ACL. I’m postponing my upcoming surgery until January, when I’ll hopefully be a little bit stronger. we’ll see! the video at the end is lulu before the appointment for the MRI results when I brought out her vest 😂 she is seriously the love of my life 💖
I normally try to just delete hate comments but I really wanted to shared this because this is just beyond cruel. Don’t type something like this and expect people not to get upset. What’s sad is today I actually felt really confident in myself and how much weight I have been losing :( #juvinilearthritis #eds #ehlersdanlos #chronic
I haven't had a bedridden day in over a month. It's been easy to track since my last one was before Antares. Even today is only half bedridden, since I was able to lie on the couch for a bit before really giving in. Whenever this happens, I try to keep in mind that this flare will end but it can be really hard in the moment. #chronicpain #chronicillness #ehlersdanlos #ehlersdanlossyndrome #hypermobility #hypermobleehlersdanlossyndrome #ehlersdanlossyndrome #dysautonomia #pretty #confident #confidence #struggle #positivity #fibrofighter #fibromyalgiaawareness #gastroparesis #courage #fatigue #pain #illness #fighter #fibromyalgia #servicedogteam #servicedog #sdit
Since our hurricane camping adventure all the reptiles have been more interactive. Caring for them so much in such tight circumstances really helped our bond. Every time Count sees me he sits up and lets out his little greeting puffs. Yesterday I offered my hand to Norbert and he ran over to inspect and lick it (and had to lick my sunstone bracelet a dozen times). Darwin was out basking against the glass today so I spent some time just running my fingers over his scales. Jinx has been hanging out against the glass too just watching us all pass by. Only Isis is same as always - happy to sleep her days away in the big box my dad custom made for her after she outgrew all the store bought hides. . . #spoonie #spoonielife #chronicallyill #chronicillness #POTs #potsie #eds #edszebra #ehlersdanlos #ehlersdanlossyndrome #chronicpain #ehlersdanlostype3 #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #hypermobility #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #gastroparesis #dysautonomia #disabled #cripplepunk #bluetongueskink
So fed up with pain and everything. In a neck brace and may be needing 1 or 2 spinal surgeries. Finding out Thursday I hope. Uni lectures start Monday but I can’t go. Pain sucks but I need to make the most of it. Would really appreciate some positive comments xxx Repost from @myradiary 😘#spoonie #spoonielife #spooniewarrior #chronicpain #chronicpainwarrior #fibrowarrior #fibromyalgia #fibro #cfs #myalgicencephalomyelitis #ehlersdanlossyndrome #ehlersdanlos #hypermobility #potssyndrome #dysautonomiaawareness #raredisease #awareness
Things that exhaust me; Standing for a long time Walking a long time Being around people for too long Large crowds People unexpectedly being loud in my quiet places Cooking Hot weather Showers Basically just existing #eds #ehlersdanlossyndrome #ehlersdanlos #heds
Struggling with chronic illness is hard enough without figuring finances in. Now imagine being young, disabled and unable to work for the funds you desperately need for expensive medical tests and treatments. That’s what @kk.manning (pictured) is dealing with right now. She’s an absolute doll with a huge heart!! Please check out her feed with the link to a go fund me account her friend has set up. Thx 🙏🏻💛 #chronicillness #disabled #eds #ehlersdanlos #spoonie #spoonielife #zebrastrong
It seems like no matter how much I know about my chronic illnesses there’s always more to learn! This used to be discouraging for me, but now I’m thankful for it. I realized that with new knowledge comes new potential solutions! I know that no matter how many different things I’ve tried, there’s always something new if/when that doesn’t work...in fact, I count on it to keep me going! . That all being said, when I AM learning about them, this is my reaction exactly😂🤷🏼‍♀️ . This amazing(ly relatable) illustration is from @hidradenitis.selina ❤️🙂 . . . . #chronicillness #chronicpain #invisibleillness #ehlersdanlossyndrome #ehlersdanlos #fibromyalgia #ankylosingspondylitis #fibro #cyclicvomitingsyndrome #chronicfatiguesyndrome #posturalorthostatictachycardiasyndrome #spoonie #spooniehumor #spinalstenosis #eds #zebrastrong #pots #potssyndrome #chronicfatiguesyndrome #lymedisease #mentalhealth #funnymemes #funnyvideos #chronicallyill #regrann
Two outings with my trial #wheelchair , and now I'm not sure if I'm healthy enough for it. ☹️ The arthritis in my shoulder and hands is kicking my ass now. 🤷 Does anyone know of a very lightweight, easy for a small woman with arthritis in all joints, folding power chair option? I live in a place with very snowy winters too. Suggestions?? ********************* ********************* #Spoonie #SpoonieWarrior #SpoonieStrong #canyouseeMEnow #FuckFibro #ChronicIllness #ChronicPain #ChronicFatigue #InvisibleNotImaginary #ButYouDontLookSick #AutoimmuneWarrior #MillionsMissing #Osteoarthritis #EarlyOnsetArthritis #SpoonieLife #acmpr #ChronicallyIll #MECFS #ChronicFatigue #ChronicIllnessAwareness #InvisibleIllness #EhlersDanlos #BreakTheStigma #ChronicFatigueSyndrome #Subluxation #SpoonieDiaries #SpoonieSupport #SpoonieBlogger #MedicalMystery
Saturday afternoon looks like: knitting and heating pad. I’m taking it verrrry easy after yoga and tea with a friend this morning. It felt good to do some gentle movement, but my joints are still in their premenstrual pain state, so I’m giving them the rest they need. • How are you spending your Saturday? • • • [image description: a three-tone scarf is folders on top of a heating pad, with knitting needles sticking out.] • #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
So it's Bolton Pride weekend. This town have put on an amazing event, well worth supporting. If you haven't gone this year, do go next year. As for myself, I put so much into the warm up rehearsal and walk across town, I ran out of steam and had brain fog just in time for the performance, so it was not my best. I am wrecked now and haven't left my chair since I got in, but it was so worth it if it helped bring Deaf awareness to the community in any way. #invisableillness #eds #ehlersdanlos #ehlersdanlossyndrome #cfs #chronicfatiguesyndrome #chronicfatigue #chronicillness #chronicpain #wheelchairlife #deaf #deafcommunity #deafculture #deafawareness #bsl #signlanguage #britishsignlanguage
#LilansLifeUpdate No. 2: I dislocated my wrist and am in a brace/sling! . TL;DR: My wrist dislocated in June and has not recovered, but continued to sublux and re-injure with normal activity. I had xrays ad saw ortho. I had an MRI yesterday and have an ortho follow-up with a surgeon on Oct 1st to talk options. . The full saga up until now is in the comments below. . . It's all taken a pretty good toll on my mental and emotional health: not working with my old class, feeilng like I can't even properly communicate in ASL, everything just feeling so much harder, constantly getting asked "what I did" and given wishes of "healing up soon", and the discomfort and pain. It's hard. Progression of my illness is always hard on me. But the restriction of my hands and the realization of how bad they are already is really really tough... . . Description: Image 1: Lilan is laying on their bed with a black wrist and thumb brace on their left arm; they are smiling at the camera while Gracie and Harry are flailing behind them. Image 2: Lilan is laying on their bed with light bees compression sleeves on both arms and be beige with white velcro wrist and thumb splint/brace on their left arm; Harry is asleep in their left arm pit under their left arm and Lilan is smiling at the camera. Images 3 & 4: Lilan's left arm; they have on a custom-made light beige wrist and thumb splint with white Velcro. Images 5 & 6: close-up selfies of Lilan; they don't have any of their facial piercing jewelry in; their hair is in braids and they are smiling and then sticking their tongue out at the camera. . #health #myhealth #disability #queerdisabled #transdisabled #chronicillness #invisibleillness #butyoudontlooksick #medicated #eds #ehlersdanlos #ehlersdanlosyndrome #progressiveillness #degenerative #gotcollagen #dislocation #wristinjury #brace #splint #MRI #mentalhealth #mymentalhealth #depression #anxiety
I'm incredibly blessed with awesome friends and family, and the ability to enjoy life even though I'm sick (and sometimes even forget about the sick part!). I had a really hard week but today I didn't even think about it. What a fun day hanging out and playing mini golf 😊
Some people do not support cannabis use and that's okay, because I will continue regardless. My husband said it perfectly. I asked if he told the truth at work of why we came to Nevada...for my health, climate, and cannabis. He said, "Yeah! Who gives a shit who likes it! So my wife smokes weed and it raises her quality of life!" We can only try to teach those who do not understand, but never ever let anyone make you feel less than. I smoke and ingest cannabis! I now rely on cannabis for pain control and I am damn proud! 🌿💕 . . . . #spoonielife #chronicillnessblogger #chronicpain #chronicillness #medication #heds #ehlersdanlossyndrome #chronicbackpain #herniateddisc #ehlersdanlos #holisitichealth #holisticmedicine #legalizemedicalmarijuana #marijuanamovement #mentalhealth #nevada #lasvegas #lvcannabiscommunity #medicalrefugee #risingzebra
🍁 Fall 🍁 is here & we are celebrating with a ✨GIVEAWAY✨! WIN a $15 CREDIT to ChicBurlap’s Etsy Store!! Enter for a chance to WIN by: 1. FOLLOW @ChicBurlap 2. TAG 3 friends in the comments below 3. LIKE ♥️ 3 recent posts on @ChicBurlap Winners will be drawn on Tuesday, September 25, 2018! Good luck 🍀 to everyone! - - - - - - - - - - Rules: US Entries only! Per Instagram rules, we must mention this is in no way sponsored, administered, or associated with Instagram, Inc. By entering, entrants confirm they are 13+ years of age, release Instagram of responsibility, and agree to Instagram's term of use. #giveaway #ShopEtsy #EtsyLove #charlottesgotalot #fallishere #tablerunnershabbychic #chevron #rusticchic #tablerunner #farmhousedecor #forthehome #adventureculture #transformyourtable #etsybest #cushioncouture #weekendvibes #EhlersDanlos #weekendgiveaway #contestagram #apartmenttherapy #bohodecor #ganeshacharm #indianweddingdecor #diwali #weddingfavors #traveltheearth #autumn #contest #homedecorshop #shopsavy
🖤 Silver linings🖤 - New post on blog today, link in bio✨ - Please feel free to subscribe/ send a message/ leave a comment💗
Seeing the Glenfinnan Viaduct (AKA Harry Potter Train) was a bucket list moment. Having the best time in bonnie Scotland with this bonnie lass 🚂
What are your go to food options on days you can not manage to cook or prepare food? 💕 . . Patient can not feed oneself most days is playing like a broken record in my head. The reality is during the days I can barely get to the kitchen let alone make something to eat and healthy at that. Back in Wisconsin most days all I ate was a little snack and dinner. This is not good for anyone let alone with chronic illness. My mom starts work Monday and I keep thinking wow..I am back to patient can not feed oneself most days. Well I never left that but my mom helping me was great. My husband use to give me lunchboxes of sandwiches because I could not walk down the stairs. That was before I had an instagram. I hate having to ask for help in this way from my family. I am nervous but I need to figure out options besides a piece of fruit. More substance. I want to start meal prepping once everything settles. And we have a microwave so I want to prep a bunch to reheat through out the week. For now without meal prep and for when I do meal prep all ideas are welcome! Also working on being okay asking for help when I can not manage to get food because my body needs fuel to survive and thrive! . . . . . . #spoonielife #chronicillnessblogger #chronicpain #chronicillness #medication #heds #ehlersdanlossyndrome #chronicbackpain #herniateddisc #ehlersdanlos #holisitichealth #holisticmedicine #legalizemedicalmarijuana #marijuanamovement #mentalhealth #nevada #lasvegas #lvcannabiscommunity #medicalrefugee #risingzebra
Can't crack a heat pad without cracking a thumb 👍🏼🙃 - Looks like I lost this battle - Only I could dislocate my thumbs trying to ease pain in my legs... ↓ ↓ ↓ ↓ #ehlersdanlos #eds #heds #ehlersdanlossyndrome #dislocation #kttape #thumb #heatpad #spoonie #zebrastrong #zebra #zebrasneedzebras #nosleep #chronicillness #chronicpain #chronicpainwarrior #pain #fighting #fatigue #exhausted
Trying to get an exercise plan going ever since my POTS diagnosis. I've read not to use treadmills or stair climbers or anything while standing. What do y'all do? Rowing? Recumbent bike? Favorite weight lifting exercises? Please let me know!! #theteeltransformation #weightloss #eatclean #mealprep #edswarrior #pots #ehlersdanlos #exercise #weightlifting #workout #justdoit #getstrong #girlswholift #singlemama #posturalorthostatictachycardiasyndrome
Well friends, mommy has been in the hospital since Thursday. How fitting that they put in mommies IV right under her spoon tattoo!! Mommy now has a double kidney infection, a kidney stones on the left an abscess on the left kidney, she developed “c diff” because of the antibiotics she was on for the kind infection! 🤦🏻‍♀️ Hopefully her abscess goes away or at least shrinks soon and her pain lowers because otherwise she’ll have to have surgery to help! Please keep us in your prayers and another huge thank you to everyone who is going to see mommy and who is helping with SisterKitty and I when grandma is at work or with mommy! To everyone else, we hope you have a healthy weekend and as always we appreciate you and we WoofMew ✨🐾💛🐾✨. . . . . . . #loveknowsnospecies #smoothcollie #kidneyinfection #kidneystones #kidneyabscess #cdiff #raredisease #dazzle4rare #hypermobility #invisiblefight #invisibleillness #butyoudontlooksick #chronicallyfabulous #chronicallyawesome #chronicillness #ehlersdanlossyndrome #ehlersdanlos #posturalorthostatictachycardiasyndrome #chronicpain #chronicallystrong #zebrastrong #spooniestrong #spoonielife #spoonietattoo #spoonieIV #chronicpainwarrior #owie #woofmew
Liberty the dog .... I’m rearranging my bedroom and I found one of Liberty’s toys. I looked down and saw this. She was hugging her toy sleeping with it. It’s finally back on the market!! What am I talking about? Liberty’s book, Ehlers Danlos Syndrome with Liberty the Dog. If you know a kid with EDS this is the perfect gift to get for them for the beginning of the school year! Liberty will help the EDS kid better understand EDS and explain it to their classmates and teachers and coaches. If you don’t know an EDS kid and you’re and adult with EDS this book will help you as well. Would you consider donating a copy to your local library to help spread awareness? For a quick look inside the book go to YouTube at https://youtu.be/cxYH0BTI6dg You can buy your copy anywhere book are sold online. You can get a copy here. https://www.amazon.com/dp/1723438138 To read more about EDS visit genesthatdontfit.blogspot.com Find me at: https://genesthatdontfit.blogspot.com/ https://www.facebook.com/LibertyEDSdog/ https://www.instagram.com/liberty_the_ehlers_danlos_dog/ www.thelibertyofitall.com https://www.facebook.com/ymadeehosp https://www.youtube.com/watch?v=cxYH0BTI6dg&t=8s https://www.amazon.com/dp/1723438138 #genesthatdontfit .blogspot.com #Ehlersdanlossyndromewithlibertythedog #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #ehlersdanlossyndromeawarenessy #ehlerdanlossyndrome #ehlersdanlosawarenessmonth #ehlersdanlossyndrome #sportsmedicine #orthopedicsurgery #gymnastics #americanheartassociation #rumatoidarthritis #chronicillnesswarrior #chronicpain #educating_shanny #ehlersdanlos #ehlersdanlosawareness #ehlersdanlossociety #dentist #thelibertyofitall #genesthatdontfit #ehlersdanlossyndromewithlibertythedog #dentistappointment #orthopedicsurgery #orthodontics #orthopedic #genetics #educating_shanny #chronicillness #chronicpainwarrior #osteogenesisimperfecta #ehlersdanloskids #ehlersdanlosawareness #ehlersdanlossociety . #potssyndrome
Liberty the dog .... I’m rearranging my bedroom and I found one of Liberty’s toys. I looked down and saw this. She was hugging her toy sleeping with it. It’s finally back on the market!! What am I talking about? Liberty’s book, Ehlers Danlos Syndrome with Liberty the Dog. If you know a kid with EDS this is the perfect gift to get for them for the beginning of the school year! Liberty will help the EDS kid better understand EDS and explain it to their classmates and teachers and coaches. If you don’t know an EDS kid and you’re and adult with EDS this book will help you as well. Would you consider donating a copy to your local library to help spread awareness? For a quick look inside the book go to YouTube at https://youtu.be/cxYH0BTI6dg You can buy your copy anywhere book are sold online. You can get a copy here. https://www.amazon.com/dp/1723438138 To read more about EDS visit genesthatdontfit.blogspot.com Find me at: https://genesthatdontfit.blogspot.com/ https://www.facebook.com/LibertyEDSdog/ https://www.instagram.com/liberty_the_ehlers_danlos_dog/ www.thelibertyofitall.com https://www.facebook.com/ymadeehosp https://www.youtube.com/watch?v=cxYH0BTI6dg&t=8s https://www.amazon.com/dp/1723438138 #genesthatdontfit .blogspot.com #Ehlersdanlossyndromewithlibertythedog #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #ehlersdanlossyndromeawarenessy #ehlerdanlossyndrome #ehlersdanlosawarenessmonth #ehlersdanlossyndrome #sportsmedicine #orthopedicsurgery #gymnastics #americanheartassociation #rumatoidarthritis #chronicillnesswarrior #chronicpain #educating_shanny #ehlersdanlos #ehlersdanlosawareness #ehlersdanlossociety #dentist #thelibertyofitall #genesthatdontfit #ehlersdanlossyndromewithlibertythedog #dentistappointment #orthopedicsurgery #orthodontics #orthopedic #genetics #educating_shanny #chronicillness #chronicpainwarrior #osteogenesisimperfecta #ehlersdanloskids #ehlersdanlosawareness #ehlersdanlossociety . #potssyndrome
Fall 🍁 is here!! @ChicBurlap is celebrating the arrival of fall with a ✨GIVEAWAY✨! WIN a $15 CREDIT to ChicBurlap’s Etsy Store!! Enter for a chance to WIN by: 1. FOLLOW @ChicBurlap 2. TAG 3 friends in the comments that need a fall decor item 🌸 3. LIKE ♥️ 3 recent posts on @ChicBurlap Link: Etsy.com/shop/ChicBurlapHome Winners will be drawn on Tuesday, September 25, 2018! Good luck 🍀 to everyone! - - - - - - - - - - Rules: US Entries only! Per Instagram rules, we must mention this is in no way sponsored, administered, or associated with Instagram, Inc. By entering, entrants confirm they are 13+ years of age, release Instagram of responsibility, and agree to Instagram's term of use. . #giveaway #ShopEtsy #EtsyLove #charlottesgotalot #fallishere #tablerunnershabbychic #chevron #rusticchic #tablerunner #farmhousedecor #forthehome #adventureculture #transformyourtable #etsy #cushioncouture #weekendvibes #EhlersDanlos #weekendgiveaway #contestagram #apartmenttherapy #bohodecor #ganeshacharm #indianweddingdecor #diwali #weddingfavors #traveltheearth #autumn #contest #homedecorshop #shopsavvy
Let it all hang out! 🤪 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Nod if you wear a mask more often than not? Guilty 👈🏻 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ You’re not alone and it’s completely normal. We actually need that mask. How else would we make it through the day without going bonkers? ⠀⠀⠀⠀⠀⠀⠀⠀⠀ It’s super important to take it off, along with your shoes, when you get home so you can be your weird af self and not be judged for it. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ This is why it’s healthy to have friends around you who allow you to wear your mask less; to slowly peel it off a bit at a time as you feel more comfortable with letting them see the real you. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Whether those friends are irl or online doesn’t matter - trust is trust. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ It’s difficult to take off your mask on social media but not impossible. Project Patchwork is a safe place filled with women who get you because they have worn the most elaborate masks 🎭 and hung them up. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Ready to hang yours on your wall? #theprojectpatchwork
🍴Je m'essaie au semi meal prep, organisation qui consiste a préparer ses repas de la semaine sur un jour, de manière à pouvoir manger de vrais plats équilibrés même lorsqu'on n'a pas le temps et/ou l'énergie pour les préparer. En étant a la maison la plupart du temps, je ne voyais pas trop l'intérêt ; pourtant, si j'ai effectivement du temps, j'ai rarement l'énergie. L'autre réticence que j'avais concernait la conservation des aliments et surtout la perte des vitamines une fois ceux ci coupés et cuisinés. Mais avec du recul, je pense qu'il vaut mieux manger des légumes moins riches de nutriments que pas de légumes du tout et se rabattre sur un truc préparé. Je ne cuis pas d'avance car la cuisson ne me pose pas de soucis, c'est plutôt l'épluchage et la coupe des légumes. Donc j'anticipe sur 3 repas prévus + 1 joker : fenouil carotte cumin - curry de courgettes carottes - carotte râpées (beaucoup de carotte, mais ça rend aimable) - des courgettes a glisser dans n'importe quel plat. 🥄 Et surtout pour économiser mes cuillères et limiter les blessures, je coupe tout au robot. [J'épluche parce que la lignine présente dans la peau est très indigeste pour mon ventre fragile. Oui, une bonne partie des nutriments est dedans mais mieux vaut des légumes épluchés que pas de légumes du tout 😉 ] 🔸Avec ou sans énergie limitée, cuisiner en plus grande quantité est quelque chose de vraiment intéressant pour les jours de flemme/de fatigue. Mais en cas de pathologie chronique qui fatigue beaucoup, ce genre de pratique peut être un début de solution pour se nourrir correctement. Adepte du meal prep? #healthyrecipe #healthychoices #eatclean #healthy #recipe #diet #cleaneating #health #cleaneatingdiet #vegetarian #realfood #lifestyle #veggies #chronicillnessdiet #chronicillnesslife #chronicillnessawareness #chronicillness #spoonie #spoonielife #spooniewarrior #eds #ehlersdanlos #endometriose #pain #chronicpain
I’m too impatient to let my hip heal really. So stupid me decided to grab some physio rubber stretch bands and hurt myself. Now my hands smell like rubber and I can’t get the smell off 😂. Internet says I have to wait 2 months till its healed and really I don’t want to wait that long hahah. But I know that I’ll only make it worse by pushing myself. So rip. #ehlersdanlos #ehlersdanlossyndrome #hypermobility #spoonie #hip #chronic #chronicpain
Informações e Motivações sobre: 🦓 Ehlers-Danlos e Doenças Raras 🍅 Plantinhas 🏃🏿‍♀️ Corrida 👜 My Job (UFSLag) 🤳🏾 Dia-a-Dia de uma forma geral! Acompanhe meus stories! Uhuuuu 🙅🏾‍♀️🙆🏾‍♀️💁🏾‍♀️ Um ajudando o outro! Sem desanimar, apoiando e fazendo a diferença 💪🏾l🦎 #ehlersdanlossyndrome #ehlersdanlos #doencasraras #doencascronicas #ufs #UfsLag #UfsLagarto #lagartosergipe #somostodosufs #corrida #corridaderua #corredoresdearacaju #viciadosemcorridaderua #GoOnConsultoriaEsportiva #mulheres #fitness #intoleranciaalactose #vegan
AUTISTIC SENSORY IMPACTS SOCIALISATION: I hope your having an enjoyable Saturday. Socially it's nice to see people. Sensory it's a bit of a overwhelming nightmare. I'm spending time at my Parents house for a meal with a few guests. I'm very sensitive to the yellow light at my Parents, the music, conversation the laughter & my happy chappy but very noisy son playing with my niece. I blame my low energy making my sensory input more painful & therefore less bearable. The rest of tonight will involve: ☆ regulating by sitting in the dark middle room away from the music & lights for spots of time ☆ gentle stim dancing, hand stimming to create output to block ALL THIS INPUT ☆ avoiding my mother's invites to drink achohol (it's not good for me health wise) ☆ saying our goodbyes at a sensible time (9pm) and when more guests arrive (sensory wise it will be too much for me to navigate) ☆ at home watch an episode of Stranger Things (studying Eleven and Wills Family as Autistic Analogies) ☆ a Sensory Bath with candles, Epsom & dead sea salts, plants, crystals & music Remember to do the things you love at the pace that enables you to participate & stay balanced (not overwhlemed) #autisticsaturday #autisticfriendly #autisticacceptance #autisticaccessibility #sensoryprocessing #sensoryoverload #overwhelmed #sensory #sensoryprofile #autistic #ehlersdanlossyndrome #ehlersdanlos #chronicfatigue #fatigue #burnout #yourownway #yourownpace
“Shed What doesn’t serve you as the Rose unravels it’s layers to reveal the Heart-center of profound beauty” - Aether Beauty 🌹 ———— Honestly conventional beauty brands should be shaking right now because the @aetherbeautyco “Rose quartz crystal gemstone pallete” is just so gorgeous, pigmented and blendable. In addition Aether Beauty shadows are -Vegan - Cruelty Free -Nontoxix - Made with all recyclable material - the first ever zero waste eyeshadow pallete Today I used the shades “sandstone”, “Scorpio”, Rose Quartz” and “Stardust” (which I used for highlighting as well!)✨ I’ll probably be posting many more makeup looks with this because easily it will be my everyday go-to I’m super super excited to see Aether Beauty flourish and grow as a brand and just in general what other amazing products they will be releasing ✨ . . . . . . . . . . . . . #makeuplook #aetherbeauty #aetherbeautytribe #recycle #vegan #crueltyfree #crueltyfreemakeup #makeuplook #beautyblogger #simplemakeup #thegirlwhocanteat #model #modeling #nontoxicbeauty #nontoxicskincare #nontoxicmakeup #greenbeauty #crueltyfreebeauty #crueltyfreemakeup #eds #ehlersdanlos #ibd #crohns #crohnsdisease #gp #gastroparesis #eds #tubie #beautywithatube #changingthefaceofbeauty #differentlyabled #disabled #spoonie
Hey everyone! As you know things have been crazy and stressful. I fall into these spirals that are so hard to escape from. For the most part I am happy and so excited that the strain I loved still helps. After May when we came last time I got a new MRI that showed another herniation, a bone spur between my existing herniated disc and compression fracture and arthritis in my Lumber spine. Also occipital neroulgia diagnosis. Part of me has been scared that what if I can no longer get the pain to at least a 5 but I felt it and I know what the future holds. Pain relief! I am still nervous and guilty about finances with bills pushing closer to the due date. I am also so scared about going to get my stepkid. I have not been grocery shopping alone in at least a year with my injuries let alone flying there and back. Good news is her step dad is picking me up after the 4 hour flight to rest then 5 hours after we get on the plane to bring her home for her first visit. I am scared of the pain of the day and flight and also nervous of how the hell are we going to get me enough medicine to be able to do stuff. We have sat at home for years. I refuse this time. Not the first time and I want to show her that this move is worth it. She is only 13 and is so understanding of why we moved. We asked her first she said why would I want you to stay in this state if Sarah suffers and doesn't have too. And then of course came I'm going to college in California! Lol I just want her to see me a bit better than I was. 💕 Good news is I got some CBD to sample! I will share with you all soon when I know how it works but super excited for this extra pain relief and so far CBD lotion is helping a bit. Perfect for the plane. 6 days I will be embarking on my all day 5am to 10pm excursion. Im nervous but it is all worth it and I can do this. I made it 26 hours in a car. I can do this some how....some way. . . . #spoonielife #chronicillnessblogger #chronicpain #chronicillness #medication #heds #ehlersdanlossyndrome #chronicbackpain #herniateddisc #ehlersdanlos #holisitichealth #holisticmedicine #legalizemedicalmarijuana #marijuanamovement #mentalhealth #nevada #lasvegas #zebrastrong
Nareszcie można odpocząć! Wiecie od czego? Od słońca... Nieprzerwanie od początku maja słońce sprawiało, że byłem totalnie wyczerpany, skrajnie rozmontowany na dni całe. Teraz go nie ma. Już zaszło. I niech wzejdzie dopiero w maju. Niech da odpocząć! Wybrałem dla mnie i dla mojej Monisi apartament z najpiękniejszym widokiem w #szklarskaporeba - jestem w tym dobry! Nie chwaląc się 😎Ten ostatni weekend lata będzie piękny. Zaliczyłem przedprzedostatni semestr studiów. Teraz przez chwile znów mogę robić nic ❤️ Cieszę się, że tu dotarliśmy. Ciekawe gdzie pojedziemy następnym razem? Nieważne. Ważne, żeby razem. Teraz już zawiezie nas Monisia :-) #wakacje #urlop #weekend #szczescie #szrenica #karpacz #sunandsnow #góry #mountains #gebirge #jesień #odpoczynek #nicnierobić #lezecplackiem #niepełnosprawny #ehlersdanlossyndrome #ehlersdanlos #fingercrossed #instalife #instaphoto #instaday #szczecinboy #photooftheday #photo #zdjecie #pieknywidok #view #widokzbalkonu #kocham
I SLEPT (almost) all night! Praise the goddesses!🧚🏼‍♀️ . But the last weeks has taken its toll, I’m weak as a sunburnt snowflake (my fav Lizzie Birdsworth quote), still exhausted and in constant pain. So I sleep some more. And some. I’m mending myself I guess. . I have visited this small island on the picture, during daylight though. Isola Bella, Taormina, Sicily. Beautiful! . . #ihavebeensleeping #sorelieved #stilltired #sleepsomemore #fatigue #chronicpain #ehlersdanlos #isolabella #sicily #bynight
Yesterday started off amazing, and though I'd still consider it a pretty good day, it got kind of rough towards the end. 🦓 I started my day with a massage, then I went for a hike. When I got home, my right hip was bothering me (and I definitely should have let it rest 🤷), but then my roommate invited me to do a "Foodie Walk," and instead of resting I decided I'd go. 🦓 I spent most of the walk limping, but honestly I'm still glad I went. Sometimes it's nice not to let my condition defeat me, especially when it hurts. Today I guess I'll spend most of the day in bed watching Netflix to recover. #worthit 🦓 🦓 🦓 #eds #ehlersdanlos #ehlersdanlossyndrome #connectivetissuedisorder #chronicpain #chronicillness #limping #hipsubluxation #hipdislocation #powerthrough #fitness #hiking #hikingthemountains #netflixinbed #spoonie #spoonieproblems #chronicpainwarrior
one of the biggest downsides to having a chronic illness is that you learn to hide your feelings. you learn that people don’t want to see pain - physical or emotional. and when you have physical or mental health issues, you learn that to avoid judgement you should nod and laugh through the pain or sadness or grief you feel. hiding your emotions becomes second nature. well, I want us - you, reading this - to stop. stop pretending. stop acting. stop being inauthentic. we will never change the conversation regarding our experiences if we do not start being honest about our feelings. it’s okay to not be okay. ❤️
So I meant to post this yesterday when we did our facials for #facialfriday but a late night pain flare got the best of me so we are gonna go with #selfcaresaturday 😂 the videos we made I will be uploading today but know I meant to post these last night after we did them🤦🏼‍♀️ oh well better late than never... that’s what living the chronic illness life is all about! #itried #latepost #itsokay #embraceyourself 📸: @mauramaginnis 🌟 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
We see you 💛 • 📷: @denham.robert
PRECISION HYDRATION ⭐⭐⭐⭐⭐ 1500 contains 750 mg of sodium per Packet or Tablet! EXCLUSE DEAL TO MY FOLLOWERS . USE CODE POTS15 TO Receive 15% off your First Precison Hydration Order! Precisionhydration.com Precision Hydration has a light taste that for once didn't taste like I was drinking a sodium packet or a watered down vitamin. Instead in was surprisingly refreshing. Closest thing I could describe it too is if someone droped a lemon in my water. Yet it's doesnt taste like lemon. Guess you will just have to try it.😁 Precision hydration also has some electrolytes great for dehydration. 125mg of potassium, 24mg of calcium and 12mg of magnesium. I have been using Precision Hydration since I got out of the hospital last week after a Pots episode 83/45. Since then I have been 112/60. This is the best I have been in a while. I kept using it to see if it's wad just a fluke. I wanted to wait before for giving this review. I really do think it's this product. Therefore I give it 5 put of 5 stars. #precisionhydration #pots #potssy #dystonia #chroniclife #healing #chronicpain #chronicfatigue #eds #ehlersdanlos #invisableillnes #chronicillness #fibromyalgiawarness #chronicmigraine #dysautanomia #ms #butyoudontlooksick #potssyndrome #spoonie #spoonlife #chronicmigraine #dysautanomia #spoonlife #fibromalgia #potswarrior #tachy #fatigue #guthealth #adreanalfatigue
#Repost @blindnewworld (@get_repost ) ・・・ These are some weekend-ready mobility canes - so stylish! #BlindNewWorld . #Repost @manta.sei "Because having an actual WHITE cane is too boring. Pastel pink, silver glitter, and lilac! Since I use a cane everyday, I think it’s important that they match my style and personality 💕#pastel #blind #WhiteCane #EhlersDanlosSyndrome #EhlersDanlos #EDS #Nystagmus #LegallyBlind #VisuallyImpaired #OcularAlbinism #RNIB " . [IMAGE: Three mobility canes lined up against a door. The first is pastel pink with a fuzzy mint green cat attached to its black handle. The second is a glittery silver with a plush pink-frosted doughnut attached to its black handle. The third is lilac with a fuzzy pink cat attached to its black handle.] . #MobilityCane #RockTheCane #ItsJustACane #blindness #VisualImpairment #LowVision #OrientationAndMobility #CustomFashion #MakeItYourOwn #SparkleAndShine #DIYStyle #FriYay #WeekendVibes #FridayFeeling
Did cardio and maybe half my lift before I ✌🏼’d out yesterday because I wasn’t feeling it. Energy levels are essentially nonexistent right now but I’ll keep going through the motions and doing my frickin best. Enjoy your weekend & go hawks. 🖤
Went back to pick up my car and see my mum and sister and now feel so much better mentally! The POTS specialist is sending me a prescription to tide me over until everything is sorted here. I hope it’s sorted in time 😬 Jammy dodgers always. Been wearing compression stockings and Spanx and feel a bit more alert! Although I feel like I’ve done some real damage with the pain I’m in. Exhausted doesn’t cut it 😴 First time I’ve driven in a long time. My poor car 🙈🙁 #potssyndrome #potsrecovery #potssyndrome #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #ehlersdanlos #chronicillnessawareness #chronicillness #jammydodgers #chronicfatiguesyndrome #mecfs #anorexiarecovery #edrecovery #weightgain #nourishtoflourish #nourishnotpunish #eatittobeatit #biscuits #anxiety #depression #recovery #adulting #impostersyndrome
Date night with my hubby! Billy Joel!! Such a great night! @multitudinal @billyjoel
Today at the New England Connective Tissue Disorders Symposium I'll be speaking about Cannabis from the patient perspective, a brief introduction of cannabis with a focus on how to use cannabis medicine with tips and information on the different dosing methods and available products. #cannabiscommunity #cannabis #medicalcannabis #cannabisismedicine #medicalmarijuana #imapatient #patientnotacriminal #painpatient #painpatientsmatter #ehlersdanlos #ehlersdanlossyndromes #ehlersdanlossyndrome #ehlersdanlossociety #hypermobility #hypermobilitysyndrome #connectivetissue #connectivetissuedisorder #neconnectivetissuesymposium #marfan #chronicpain #chronicillness #365dayswithdisability #newhampshire
I really want to train again but can’t since I subluxated my hip
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