Liste des hashtags les plus populaires par sujet #HEDS

Well, isn't that the truth ‍♀‍♀

Omg! I had the best appointment with my new neurologist. Honestly probably the best appointment in my life He was super invested in listening to me and asked me about everything going on. We talked for so long! We discussed every body system and how autonomic dysfunction can affect everything. . . I'm going to be getting a full work up of tests and hes going to help me set up good hydration, nutrition, and medication for whatever we find. We are even doing genetic testing ! . . Wow guys honestly my medical PTSD makes me so afraid to meet new providers and today I was so surprised and pleased! Not every doctor is a monster lmao ‍♀️ . . . #disabledandcute #creative #cripplepunk #babewithamobilityaid #chronicallyfabulous #sickgirlsclub #neurodiversity #actuallyautistic #neurology #hEDS #ehlersdanlossyndrome #potsie #dollswithdye #arcticfoxhaircolor #disabledartist #wheelchair #wheelchairbabe #wheelchairlife #gothgirl #greenhair #medicallife #chronicallyill

I’m so so excited to be posting this!!! (There have been so so many times I honestly believed I wouldn’t ever be able to say this!) but here we go! I CAN FINALLY WALK!! It’s taken 127 days (according to Siri) of hard work, set backs and many breakdowns but I’m finally here! Today I managed to walk around my whole ward with my physio (and a few breaks) and I couldn’t be happier! I don’t think I ever would have got here without my friends, family and some of the amazing staff here (especially my physio and a couple of my HCAs/nurses!) I can now also say that I have discharge planned for mid-end of May which is super scary and exciting!! - - - - - - - #paralysis #ehlersdanlossyndrome #paralysisrecovery #hospital #hospitallife #eds #heds #fnd #functionalneurologicaldisorder #chronicillness #chronicfatigue #chronicpain #babewithamobilityaid #walking

“Making the invisible➡️visible: It’s just growing pains...”⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣ “It’s just growing pains.” Pediatricians answer to my mother as she sought answers for my pain. My mother saw & felt my pain. She knew exactly what I meant when I’d wake in the middle of the night, sobbing from pain “behind my knees.” If I couldn’t call loud enough for her, I couldn’t even stand to walk to my parents’ room, so I’d slowly crawl on all fours, crying & waking up my mom for help. I was allergic to aspirin (& I wasn’t allowed ibuprofen at that time), so acetaminophen, hot water bottles & leg massage would slowly easy my pain. My poor mother would wake quickly & spring into action. I remember feeling like every second was an eternity while waiting for the water to get hot enough to heat up the thick rubber hot water bottle. I can still remember the squeak the screw top made & smell of the hot rubber that brought sweet relief. I’d move my legs constantly b/c keeping them still caused even worse pain. My mom would massage my legs until I fell asleep from crying & pain, & as soon as all the remedies took effect. I would get this pain most often in my legs, but sometimes in my arms, hands & feet, too. That’s the pattern of my 21 surgeries as well. Lower body, moving up in later years as my body degenerates, bit by bit. ⁣⁣⁣ ⁣⁣⁣ It’s a pain I can’t even describe. But, “it was just growing pains,” so I MUST be just looking for attention. Because kids wake from sleep “to get attention.” ⁣⁣⁣ ⁣⁣⁣ I’ve never known a life w/o pain, I’ve become accustomed to it. My pain threshold is ridiculously high. ⁣⁣⁣ ⁣⁣⁣⁣⁣ I’ve had nights like that w/my daughter, but thankfully since she was diagnosed early, I can take preventative measures to help reduce injuries/degeneration. ⁣⁣⁣ ⁣⁣⁣ EDS effects SO much more than “just joints,” but that condescending phrase is enough to put me in advocacy mode. Living life in severe pain changes a person. I don’t have “RBF,” I have chronic pain face. I usually distract myself & enjoy time w/family & friends, wearing my mask; but alone, I must look seriously mean. Strangers think it’s appropriate to tell me to smile. You never know what someone is going through...

“Making the invisible➡️visible: It’s all in your head!”⁣⁣⁣⁣ ⁣⁣⁣ “It’s all in your head.” The dismissive phrase I heard for 25 years as my body fell apart; no answers to why I was always in terrible pain, beyond exhausted, so easily injured, & generally sick. I’d all but given up trying to find answers & leaving appointments in tears, when I met my amazing orthopedic surgeon I’ve now seen for 19 years. He says after a surgery, “I think you have Ehlers-Danlos Syndrome.” Huh? I didn’t give it too much thought, until my health began to decline even more a few years later. Officially diagnosed with EDS, a genetic connective tissue disorder, in my early 30’s, I still kept my health fairly hidden due to shame & embarrassment. Widespread chronic pain, constant subluxations/dislocations, exhaustion & much more. I didn’t want pity, attention, or to be a “downer,” when from the outside, I appear totally “normal;” but in reality, it effects me every single moment of every single day. It’s impossible to ignore, but I try to hide it. I made jokes, deflected, smiled through pain & hid if I was unwell/recovering from one of my 21 surgeries (to date). ⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣ Until my only child was diagnosed at 4.5 years old. Devastated, I knew I had to do SOMETHING to make this road easier for her & others. I was responsible for passing this genetic disorder to her. I needed to make a difference. I didn’t want her left in tears because doubting, unaware strangers simply don’t understand what they can’t see. I want to protect her from injury & be proactive in her care to spare her from as much pain as possible. It’s hard enough for US to understand; I can’t imagine how we appear to strangers. ⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣ Reluctantly & clumsily I started sharing my story, going with friends to appointments, offering specialists’ lists, helping people who reached out to me get diagnosed. ⁣⁣⁣⁣ ⁣⁣⁣⁣ I hope my lifetime of pain will not be wasted on pity; it will be used to inspire. ⁣⁣⁣⁣ ⁣⁣⁣⁣⁣ Thank you for reading. ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣#ehlersdanlossyndrome #ehlersdanlos #zebrawarrior #zebrastrong #invisibleillness #ehlersdanlosawareness #edsawareness

1 year ago I had open MALS surgery. My only memory of that day was opening my eyes for a couple seconds to see the pain doctor next to me, holding my hand, saying that she had me and was going to find a way to fix the mess I came out of surgery to. This image is one I hold close on the dark days of recovery and has gotten me through one hell of a year... ~1 month post op I was readmitted with terrible vitals and my GI started TPN ~2 months I was working a camp for kids with hemiplegia, but was fighting off a nasty site infection on my port I had to get placed the day I got back to PA ~3 months I started back at work with the horses and discovered the true extent of my body’s decline ~4 months I was diagnosed with SIBO and got so sick from its treatment ~5 months I hit a level of fatigue that I didn’t think was possible ~6 months I had a full breakdown about not being able to eat a few bites of food without pain, and ended up crying on the floor of my kitchen and throwing every piece of food in sight ~7 months I traveled alone to a medical conference and stood proudly as living proof of the endless possibilities for a complex patient with a committed medical team ~8 months my health plateaued and I was reminded of the healing power of normalcy ~9 months I stared my traumatic past in the face, and released it into the world ~10 months l was reminded of true length of this journey and fought towards the future one day at a time ~11 months I presented at OT’s national conference and lived life to the fullest with my Jefferson OT family And now, at 1 year post-op, I’m back in school and on track to get my MSOT degree next spring. Hard doesn’t even begin to explain all that’s happened since surgery, and full disclosure, I’ve gone back and forth on whether this was even worth it. I wasn’t ready for this. I wasn’t prepared to be constantly reminded of the events leading to diagnosis and surgery. I’m not thriving, and this isn’t normal, but I’m alive. I show up every day to this thing we call life and I do my best. I didn’t get my “miracle” like we hear from many post-op MALS patients, but this—whatever this is—is going to have to be enough for right now.

Slowly learning to love the tube that is keeping me alive

(Another random Prom pic) I’M BEING DISCHARGED TODAY!!! I’ve spent a total of 158 days in hospital (thank you Mr Google), recovered from paralysis (even though my right leg was ridiculously stubborn) and whilst doing so met some of the most wonderful people who I will miss so much! (Especially after spending 1/3 of my year with them!) It’s been hard and there’s been a lot of tears but also a lot of good moments/celebrations! When I was first brought into hospital I remember being so terrified that I’d never move my legs again and now here we are, over 5 months later and I’m so close to being able to independently take a few steps without any kind of mobility aid. I’m sending so much love to you all, and if you’re in a position rn where everything seems hopeless, I’ve been there and I’m telling you that things can and do get better and I’m wishing the best for every single one of you reading this now I’m always just a message away if anyone needs me (especially now I’m out of hospital, I intend on being better at replying to messages!) - - - - - - - - - - #ehlersdanlossyndrome #eds #heds #paralysisrecovery #functionalneurologicaldisorder #fnd #pots #posturalorthostatictachycardiasyndrome #chronicpain #chronicfatigue #chronicillness #hospital

➡️swipe to see me practice walking! (Video speed 4X)⬅️ #forearmcrutches #wheelchairmodel #disabledmodel #disabledactress #deafmodel #autisticmodel #deaf #actuallyautistic #aspie #aspergirl #elhersdanlossyndrome #heds #paralyzed #uniplegic #strokesurvivor #posturalorthostatictachycardiasyndrome #wheelchairlife #disabledandcute #AFOs #SanDiegoModel #italian #mexican #nativeamerican #mixedrace #longhair #makeup #makeupoftheday #SanDiego #vogmask Photographer: @pilotavery (keep getting asked: shirt and leggings are from Target’s kids section) @targetstyle @target