#ehlersdanlossyndrome

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Get yourself an SO that stands behind the camera so you’ve got something genuine to smile about. 💕 . What do you all think about this new venture in IGTV? I’m a YouTuber (aspiring, okay? 😂) so that’s where I put my video content. However, I’m willing to make some more raw footage for IGTV. . Let me know if you’d actually watch it. Love it, hate it, etc. I’d be interested to see if making content for this new platform will be worth the effort!
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Heading out to #cincinnatipride2018 despite a bad morning with the tummy and little sleep. I really hope it goes well! #determined This is my first pride festival in 13 years because of #chronicillness but I won't be taking my wheelchair or a rollator. I got this! I can't wait! My only regret is I couldn't afford all the gels necessary to do my head up rainbow proud. #pansexualpride #zebrastrong #ehlersdanlossyndrome #potssyndrome #mcas #gastroparesis
hey guys. So I had a really rough night, actually it was only an hour of feeling horrible. I went to bed at 2am and woke up at 2:30am to extreme nausea. I called my mom and ran to the bathroom. My HR was staying around 150-160 for around 10 minutes. I was shaking and almost out of it. I was dry heaving too, but after that the nausea practically went away. Slowly my HR came down and I started feeling better. It was so weird cuz it didn’t last long at all but I felt absolutely miserable. My heart felt like it was gonna burst. Let me know if anything like this has happened to you. • So today I got up at 11 and eat breakfast. Probably just gonna work on cleaning my room more today. I’m babysitting tonight at 6, so that should be fun, and hopefully not too crazy. Sooo glad I’m feeling 10 times better today. Still struggling with pressure headaches. Sorry this is so long!! Love always -Laur❤️ . . . . . #eds #zebrastrong #ehlersdanlossyndrome #chronicillness #pots #allergies #anaphylaxis #crps #chronicregionalpainsyndrome #chronicpain #chronicillnesswarrior #chronicillnessawareness #ibs #gerd #youtube #youtuber #migraine #chronicillnessyoutuber #medicalyoutuber #healthyoutuber #smallyoutuber #vogmask #cbd #wheelchair #wheelchairlife #posturalorthostatictachycardiasyndrome
So I’ve been discharged. The NHS have just given up and are refusing to treat me for reasons no one understands. As I’ve said before, the NHS is good for a broken leg or a routine blood test but anything more complex, a doctors ego just takes over. I’ve got no diagnosis, treatment plan, follow up or reassurance and don’t know how or if I’ll ever have any part of the life I had 9 weeks ago. At least now I’ll be at home but all I want more than ever now is an answer! #ehlersdanlossyndrome #POTS #postralorthostatictachycardiasyndrome #foregutdysmotility #chronicillness #hospital #spreadawareness #share #fnd #dysautonomia #dystoniaawareness #dystonia #diskinesia #functionaldyspepsia #scoliosis #functionalneurologicaldisorder #notinmyhead #scoliosis #neurology #spoonieinschool #chronicallygood #singer 🎤 #singersongwriter #originalsongs #originalsong #blues
Morning after ER glamour shot. Yesterday I had a 3+ hour seizure after 2 hours of extreme pain, nausea, breathing issues, and having trouble staying conscious. My parents brought me to the ER, where the nurses carried me inside took blood and popped an IV in me with fluids. I was having such trouble breathing, even though my oxygen levels were good (thank you VCD) that, after some needed bullying from my mom, they gave me a nebulizer, which helped relieve the chest spasms so I could breath. We then preceded to have the worlds worst doctor... You couldn’t even make up some of the things he told us last night. He refused to give me any medications. Normally I refuse to be given anything, but I was in so much pain and feeling so horribly that I would have actually taken absolutely anything. Here is a list of things the doctor did: -The nurses pulled 8 vials of blood, which the doctor never did anything with because he prides himself on “saving the hospital thousands of dollars by not running tests.” Yet, he still let the nurses take blood from a severely dehydrated patient, who has blood volume issues and is in the middle of a 3hr seizure. -He refused to give me any meds and when he finally offered meds he refused to give them through IV because “the body absorbs things better through the stomach.” Which isn’t true, especially for someone who has gastroparesis and can’t stomach anything and nothing absorbs correctly. -He made me talk and wouldn’t listen to my mom even though I was still seizing and, although I could talk some at that point, was still struggling and talking made my seizure last longer. -He made me list every doctor I’ve ever seen and every test I’ve ever had and then told me “well why did you come to me if you’ve seen all these specialist? There isn’t anything new I can tell you” uuummm I’m coming to you because I feel like I’m dying and I need emergency rescue?... -He then told me that I need to quit going to specialists because my illnesses are “out of bounds” and specialist won’t know anything about them. -He told me I need psychiatric help because “if someone landed him in a wheelchair for 6 months he’d need help.” (Continued in comments)
“You and me in our playhouse Living in a veil We never need to go without Memories bring no joy or peace We are alone And all we need” 🖤 (Song is “Bernadette” by @iamx ) • • • #love #flexible #winning #ehlersdanlossyndrome #toestoforehead #stretching #eastcoast #model #altmodel #tattoomodel #girlswithtattoos #girlswithpiercings #pale #palegirls #apartmentliving #chloe #lifeisstrange #bluehair #leggings #legsfordays #gamergirl #antisocialsocialclub
Used most of my spoons today and built a barbecue, totally worth it though as we haven’t had one this year AND my mum has volunteered to cook! _____ #pots #potsie #potssyndrome #posturalorthostatictachycardiasyndrome #ehlersdanlos #ehlersdanlossyndrome #eds #heds #hypermobile #hypermobility #chronicillness #spoonie #outofspoons #barbeque #barbecue #summer
Essential Oils: As someone with a chronic illness I try my best to take care of my body in any way possible. Essential oils have helped, they don’t cure anything but they can help my symptoms when I need it. Especially with my mood, Peace is my all time favorite oil and never fails to make my mood a little better. Copaiba works like CBD in a way and so I’ve been using it as much as possible. On Guard is definitely a life saver when it comes to immunodeficiency. If you have any questions feel free to ask me! #doterra #doterraessentialoils #essentialoils #stabilo #chronicillness #immunosuppressed #immunodeficiency #cvid #mcad #pots #eds #ehlersdanlossyndrome #mastcellactivationdisorder #depression #anxiety #studyblr #studygram #notes #brushpen #handlettering #colors #notetaking #rainbow #gastroparesis #crps
Today is the big day! Check in is an hour and then we climb from 3-6pm. Root for #28 ! I’m ready to do my best and have some fun 😎 how you know when you’re a real climber... the best part of competitions is access to new routes! I’m incredibly thankful for all the support I’ve received from family, friends, and sponsors to make it here for this amazing opportunity! Thank you!!! @adaptclimbgroup @adidasterrex @upper_limits @evolv_worldwide @cwx_usa @clifbar @verticaladventures #adaptivesport #adaptiveclimbing #paraathlete #paraclimbing #fightlikeazebra #edsathlete #edsawareness #ehlersdanlossyndrome
I was born with Ehlers Danlos Syndrome and have suffered symptoms because of it my whole life but wasn't diagnosed until I was 31 years old and still struggle to find treatment for many of my issues due to the lack of research and knowledge on the disorder. Please share to spread awareness. Please follow me on Facebook and subscribe to my YouTube channel to learn more about what it's like to live with chronic illnesses. Thank you always for the support <3 #edsawareness #ehlersdanlossyndromeawareness #zebrawarriors #zebrastrong #eds #ehlersdanlossyndrome #raredisorder #unchargeables #spoonie #zebra #heds #veds #ceds #feds #aeds #betrayalofthebody #nikitaelf
This is for sure what my bladder currently looks like. Despite just finishing antibiotics my bladder is a wee ball of fury literally flooring me today (and making me cry, and making me nearly pass out...that wasn’t fun). So today my best friend is heat packs and I just need to hope it chills tomorrow #ehlersdanlossyndrome #ehlersdanlos #suprapubiccatheter #angrybladder #fowlerssyndrome #neurogenicbladder #chronicpain #gastroparesis #feedingtube #catheterweek #fedup
I’m so fed up of my mum getting annoyed at me when I have my flares. I feel like she thinks I choose to have them. I don’t want sympathy, I just want her to try and understand instead of turning it into a competition who’s more tired! #pots #potsie #potsawareness #potssyndrome #posturalorthostatictachycardiasyndrome #spoonies #spoonie #spoonielife #spoonieproblems #spooniewarrior #chronicinsta #chronicallyill #chronicillness #chronicillnesswarrior #chronicillnesses #dysautonomia #dysautonomiaawareness #butyoudontlooksick #invisibleillness #ehlersdanlossyndrome #edsawareness #zebra #relatable #relatablememes
Happy the rain is holding off for the Walk for Victory! Raising awareness for Ehlers Danlos Syndrome, Marfa Syndrome, and other related connective tissue disorders 🦓 #EDS #walkforvictory2018 #ehlersdanlossyndrome #zebrasneedzebras
Apartment shopping & Disney-ing makes for a perfect day. This time next year we will be moving to Orlando to be closer to graduate school. Consequently we will have Disney and Universal right at our finger tips. I truly can not wait 😬🙇🏻‍♂️♿️🌈
This is a view of my school at 5:50am. I spotted the Jacaranda in the midst of mist. 🕯It reminds me of a candle in the dark. It reminds me to look for the good and you'll always find some glimmer of hope. 🌱 . My schedule got a lot busier this week. As a result, I unraveled from physical exhaustion on Thursday. Since yesterday was my day off, I've been able to recover a bit and I can think clearer now. Unraveling usually looks like an emotional breakdown for me, but it always comes after pushing my physical limits. My emotional breakdown happened at home, luckily. My boyfriend is no longer a beginner at supporting me when I break and he did a great job helping the situation. What I really need is sleep, and sleep is not something I'm good at. I'm trying new things to help me sleep EVERY night, and to increase the hours I sleep EACH night so that my body and mind are actually getting rest. First thing I'm trying is a new evening routine. Wish me luck! Any suggestions welcome for better sleep without the aid of drugs or medication. Hope your week ended with clarity and fulfillment. 💌 . #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #breakdown #needsleep #nighttimeroutine #everynight #eachnight #jacaranda #candleinthedark
I thought this shirt was very appropriate for a #spoonie since it always takes my maximum effort just to keep my joints in place 😂😂😂😂😂 #deadpool #maximumeffort #ehlersdanlossyndrome #eds #yesihavematchingpantstoo And yes, I'm a mammal, so I have #nipples 😂😂😂 since I breastfed two kids they're perpetually hard now ¯\_(ツ)_/¯ and yes I'm aware my boobs are saggy, they topped out at 32KK and gravity, thou art a heartless bitch 😂
So I threw up my gastric pacemaker tonight! Honestly one of the most scariest experiences of my life😭 It wrapped around my throat and coiled into my mouth and I couldn’t breathe I was so scared I had no idea what to do! I had to call Tom who helped me get it out of my throat and I could breathe again. It was nothing like throwing up an NJ this was much more frightening 😱 Now that I’ve calmed down I’m so frustrated with what’s happened! Not only did the new setting make no difference so far I now no longer have a functioning pacemaker at all😪 To make things worse we are now unsure whether my NJ is still in the right pace and I’ve been throwing up ever since (hence the NG in the other nostril) I’m going to contact the hospital on Monday and find out what I should do! I’m more frustrated at myself more than anything! 😪😪😪 I’m a failure. #gastricpacemaker #intestinaldysmotility #gastroparesis #ehlersdanlossyndrome #zebrastrong
Thanks to occupational therapy, my interphalangeal joints are stronger and more stable. Occupational therapy has helped improve my functional status by introducing me to Oval-8 splints and isometric exercises. These splints are incredibly helpful when I need to press elevator buttons, complete tasks that require hand strength, and carry on with my daily activities. #ehlersdanlossyndromeawareness #ehlersdanlossyndrome #medicine #paschool #study #quotes #student #futurepa #whitecoat #scrublife #professors #newchallenge #strong #womeninmedicine #whitecoat #nysspa #oval8splints #medical #futurePA #physicianassistant #aapa #saapa #pance #panre #pastudent #doctor #clinicalmedicine #anxiety #support #healingwords #silverringsplint
I am SO proud of my mom for volunteering and then getting asked to work at St. Hubert's Animal Welfare Center. They are a way station where they have pets sent to them where they have an over abundance of animals. For example my mom helped volunteer where St. Hubert's transported over hundreds of dogs from Puerto Rico to their shelter and also send them to other shelters who need more dogs. My first dog was from St. Hubert's so they also have a special place in my heart. Check out their amazing website www.sthuberts.org they do great work! ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #adoptdontshop #singersongwriter
Home. Shattered. Happy. Long but lovely day visiting Birmingham University with my girl. Dipping into a big bowl of dal whilst putting my poor burny feet up. #EDS #ehlersdanlossyndrome #POTS #posturalorthostatictachycardia #bloodpooling #burningfeet #peripheralneuropathy #ME #CFS #uniopendays #meandmygirl #precioustimes #universityofbirmingham #healingjourney #healingchronicillness #daladdict
Today I've finally got to play ts4 seasons! I stayed up way to late yesterday, playing Skyrim and at 02 I decided to chat with EA support. We fixed the problem and I'm so happy 😍 now I'm building and creating as I have been planning for weeks, waiting for the update and seasons to be released. The animals are sleeping and I'm hoping for a walk later 😊 I've made potato salad with to much garlic, it's standing in the fridge waiting for dinner to be made 😃 #finally
I was getting the baby ready to leave when I dislocated something in my pelvis/hip/I don’t even know and am now stuck on the floor, but Tulip thinks it’s cool so whatever I guess. #ivefallenandicantgetup #talesfromthefloor #whyme #ehlersdanlossyndrome #eds #zebralife
wearin sunglasses cause the sunlight hurts my eyes 😎😂 Okay but in all seriousness you guys, June is migraine & headache awareness month and today is low pressure headache awareness day! 🧠 What is a low pressure headache? Low pressure headache is a common term that is used for intracranial hypotension. It refers to headache that is caused by low cerebrospinal fluid (CSF) pressure in the head due to a loss of CSF volume. This loss of CSF volume is most often due to a CSF leak at the level of the spine (spinal CSF leak). What causes a CSF leak? Loss of fluid (CSF) volume due to a spinal CSF leak may arise as a result of medical procedures, such as a spinal tap, epidural injection or spine surgery. Trauma such as a stab wound or an accident may cause a spinal CSF leak. A spinal CSF leak may also arise spontaneously. These “out-of-the-blue” cases are the ones that are often not recognized as being due to a spinal CSF leak. I have a spontaneous CSF leak - it is a complication of having EDS as my connective tissue is weaker. There’s a lot of misconceptions about spontaneous CSF leaks as they often respond differently than leaks caused by trauma. For instance, the hallmark feature of a CSF leak is an upright headache - although if someone has a spontaneous leak their headache may stop being orthostatic in nature if they have been leaking for a long time. Leaks caused by a lumbar puncture (post dural puncture headache) have a 90% success rate of being cured with one epidural blood patch. However with a spontaneous leak, one epidural blood patch is only successful 30% of the time and patients often require multiple blood patches or surgery. If you want to learn more about CSF leaks I highly recommend checking out Dr. Ian Carroll on YouTube!
I’m a coordinator for youth residential summer programs at a university, and this week was my first week with students! I’m so happy that I was able to get through the entire week with few health issues, but I’m definitely exhausted. Trying to take it easy before the next program starts. Earlier this week I had an episode of tachycardia which has rarely been an issue for me. I wasn’t stressed or anxious, so I’m not sure what the cause was. Just trying to keep an eye on it and hoping it doesn’t become a frequent thing! #chronicillness #chronicpain #chronicfatigue #fibromyalgia #ehlersdanlossyndrome #eds #cfs #cfids #raynauds #spoonie
I came home from work, and found @netflixuk silently judging poor @mayashelley. She was snoring quietly, sleeping the sleep of the just, or those drugged with vertigo meds. Are you *still* watching Friends?? #judgey #friends #ehlersdanlossyndrome
Tror det inte hänt typ nånsin att det är lördag och jag inte har några planer alls. Eller ja okej förutom att jag är ute i Hässelby med dom här och lagar mat och dricker gott, bubblar nån timma och kollar bio. Det är liksom standard, att man plöjer igenom alltihop och börjar om. Har sovit 10 timmar inatt, fick en chock när jag vakna. Antagligen därför jag är så rastlös nu och känner för hitta på något. Är det inte typiskt? Istället för fortsätta ladda batterierna blir man galen utav allt vilande? Roligaste imorse var att jag vaknade 05:45 av ren och skär vana, jag skrattade när jag tittade på klockan. Tur att jag somnade om ändå.🙈 Nu är det dags att laga mat här (igen) alltså är inte mat livet? Det är fan det enda jag går runt varje dag och planerar och tänker på. Som en jäkla hobby.👅 #singlemamalife #ehlersdanlossyndrome #motherhoodstyle #inkedup #inkedbabe #inkedmother #inkedupgirls #inkedgirlsofig #tattooedgirlsofig #throattattoo #tattedupgirls #tattedmommy #inkedmotherhood #amothersthoughts
Pre-workout vibes... currently post-workout dosed up on painkillers 🤦‍♀️ #chronicillness #butyoudontlooksick
super stocks! 😍💛
Here is my first blog post from my road trip I am currently on! "I woke up very excited and hit the road! I had a few more hours to drive and arrived just after 11AM. Until now, I had only seen the Badlands once, from a far as I was driving by it. Let me just say, this was a completely different experience. To see so much beauty up close, in person, and have the opportunity to hike a portion of it was a whole new adventure!" - link in bio!
{välkommen ljusa och glada dagar 🌞} ~ Glad Midsommar! 🇸🇪 ~ Even though Americans don’t celebrate (or at least don’t celebrate well!), Midsommar has always been my favorite out of all the Swedish & American holidays I grew up with 🌿 . . . . . . #midsommarfest #gladmidsommar #sommarsolstånd #solstånd #blommakrona #natur #fira #traditioner #svenskaamerikanen #summersolstice #solstice #flowercrown #nature #celebrate #traditions #swedishamerican #festival #theeverydayadventure_ekc #keeponkeepingon #chronicillnesswontstopme #fightlikeawarrior #ehlersdanlossyndrome
Everytime I think about training abs I wonder why I havent done it in a while.. 2 minutes in i remember why, cuz' it sucks! • My lower back and my pelvic joints hate me right now.. • But I did it so now I can just chill for the rest of the day 💪🏻 * * * *________________________________________ #scoliosisfighter #chronicillnesswarrior #fitnessgirl #physio #ehlersdanlossyndrome #instadaily #minresaräknas #physique #backattack #EDS #muscles #stronger #fucklagom #gymrat #krigarekrigar #workout #girlsthatlift #nike #health #fitness #fitspo #aldrigvila #girlswholift #chronicpain #workoutmotivation #supplements #motivation #motivational #stronggirls #instafitness
I'm at Mahalaxmi temple in East Ham ❤️🕉♿️ had an amazing time, ate lunch here, whole temple is totally wheelchair accessible and everyone is really nice. Made a special prayer with Durga 🙏🏻(not enough time to write long posts, so will continue my topics when back home!) #hindu #hinduism #hindutattoo #temple #durga #kali #omnamahshivaya #wheelchairtravel #disabledtravel #wheelchair #wheelchairgirl #hotwheels #ridinginstyle #sickpeopledoingthings #ehlersdanlossyndrome #eds #spoonie #chronicillness #disabledandcute #disabledandproud
I’m still here! (The fact that I’m alive is a miracle; I am a survivor many times over; my girlfriend knows a good pun when she sees one; I’ve had a wonderful 24th birthday week; everything from here on out is so beautifully un-looked for; I can’t wait to see what happens next; I hope you’re by my side.) #cripplepunk #disabledandcute #disabled #lymedisease #lymewarrior #lymedontkillmyvibe #ptsd #ptsdrecovery #ptsdsurvivor #metoo #survivor #ehlersdanlossyndrome
Check ✔️ Check ✔️ Check ✔️ REPEAT ⠀ ⠀ I’m freaking out a bit (a lot) because my baby is leaving for a 5 week camping adventure trip across the US on Sunday. I’m gonna miss him so much it already hurts. 😥😥😥 ⠀ ⠀ ⠀ #trendable #perfectlyimperfect #peoplehopetribe #chronicillnesswarrior #spoonielife #charcotmarietooth #chronicillness #chronicpain #chronicfatigue #fibromyalgia #crps #crohnsdisease #AFO #autoimmunedisease #spoonie #scoliosis #lupus #mentalhealth #bodypositivity #dysautonomia #ehlersdanlossyndrome #selfloveisthebestlove #selfcarematters #notalldisabilitiesarevisible #disabledandcute #lookgoodfeelgood #rawarrior #raredisease #invisibleillness #mswarrior ⠀ ⠀
Hayyyyyy! I thought I'd make an account dedicated to chronicling my chronic illnesses! I have ehlers danlos syndrome, endometriosis, Gastroparesis, Raynaud's, MCAS (not officially diagnosed but there's no doubt in my mind, I need the time and money for an official dx), dysautonomia (same as MCAS), depression, anxiety, PTSD, ADHD and probably much more I'm missing! I'm also fiercely dedicated to raising awareness for childhood cancer and its pathetic lack of funding from our government (less than 4% of the federal cancer research budget goes towards ALL childhood cancers). I lost my little cousin Casey to a neuroblastoma at 11 years old and the same year my niece Arianna was diagnosed with leukemia at 14 months old. Arianna received her bone marrow transplant 2 years ago and is still suffering side effects from her treatment. As I type this she's hospitalized being treated for sepsis AGAIN. So, yeah. A random smattering of stuff I guess 😂 #ehlersdanlossyndrome #eds #endometriosis #gastroparesis #mcas #mcad #raynauds #dysautonomia #depression #anxiety #ptsd #childhoodcancer #childhoodcancerresearch #neuroblastoma #leukemia #jmml #spoonie #spoons #spoontheory #neverenoughspoons
Don’t compare your progress to others. Your story is unique, your story is yours! Every day we move forward together to regain our human rights #CIAAGStrong
Among these people you will find influencers, motivators, mentors, best friends, sisters, family, a support system. This is my team, and I can now say that they have become my family. They pick me up when I am down, they carry me through the hard stuff and they inspire me to keep going. It's not easy to be differently-abled in the fitness world and to not compare myself to others. But they help me keep going! ❇️ ❇️ #invisibleillness #ehlersdanlossyndrome #Fibromyalgia #hashimotosdisease #pcos #prediabetes #chronicpain #chronicillness #adrenalfatigue #chronicmigraines #spoonie #ednfitness #fitspoonie #differentlyabled #hypermobility #Hyperlaxity #motivation #fitness
🌛Thank you to everyone who joined in the discussion about sleep–I've already started slowly introducing a few of the tips & I'm seeing some gradual improvement! 🌜 It can be hard not to feel completely lost in the sheer complexity of your medical situation when you have a multisystemic condition like #EhlersDanlos , or several interacting & overlapping conditions. There's a sense that everything–every organ system, every hour of the day, every facet of the body's existence–is another source of difficulty, & (to be frank) of suffering. Often the strongest & "bluntest" tools to try to control pain, like opiates, have so many side effects that they just go on to cause more problems. I am not anti-medication by any means, & I'm prescribed morphine myself; however my body haaaates it, and all opiates. This isn't a "moral" point about enduring chronic pain (& chronic everything else), but an experiential one–I know, as many of you know, how it's a constant, a daily gamble to dredge up some tolerable Life out of the symptoms, the treatments, the side effects, the trauma, the stigma. Walking that line. Lying in a bed you never chose, never made for yourself, were somehow awarded... & against that, or through that, the choices we have seem minuscule, almost negligible: sleep in this position, try this pillow, or this supplement? First we have to pluck the decent from the snakeoil, of course. And then there is the manifest inadequacy of our small powers of choice against the monstrous, immense rule of the body: daily, nightly, passionate, cruel, relentless. Only this is what we can do. In every straitened circumstance, people have found strength in the choice that remains: creep forward & claim your margin of freedom, be it smaller than a bed, a pillow, the inside of a medicine spoon. Choose what you can choose, else resignation becomes your choice. This isn't to say I'm against #acceptance , or that we shouldn't understand the reality of our situations. Accept–& choose, wherever you can. Sometimes I feel swept off my mind's feet by pain, PTSD, distress, all the flashing awfulness of sickness. Yet I am here, myself, through, after, amidst, despite it all. #disability
Yesterday was a long fabulous day! We travelled to London yesterday (and as you can see by the first photo it was an early train so I slept the entire journey haha) and we had a lovely day in Camden. I'm in lots of pain but I'm pushing through. The pavements here are terrible! My back is shot. We are here till Monday night. We are going to see Hamilton tonight! Soooooo excited! Stay positive warriors! Have a good weekend! #London #hamilton #travel #camdenmarket #chronicillness #ehlersdanlossyndrome #disabledandcute #proud
Meet the peg button 🖕🏻 It hurts 😅 and feeding is a no go apparently according to my tummy BUT at least I don’t have a big tube hanging and getting caught all the time 🌈 Insertion started off a bit crap....I had a hypo and no one could get IV access for glucose and fluids but after many attempts and the on-call anaesthetist being stood down, my doctor got a line in 😌 but after fluids and glucose I had the producer and woke up having another hypo so had tablets which I just vomited up again 😂 But since coming home I’ve been absolutely cream crackered and it hurts but I’m not disappointed....I kinda expected this and I know my doctor did too. So for now, I’ll embrace the low profile life and enjoy my day with mi best friend 💖🌈🦄 #chronicillness #gastroparesis #tubie #button #eds #type3 #ehlersdanlossyndrome #fibromyalgia #myalgicencephalomyelitis #posturalorthostatictachycardiasyndrome #smile #saturdayvibes #myfabulouslife
I’m sorry I’ve been so quiet recently, things have just been a bit crazy. New symptoms and starting new drugs, and now in the process of switching from taking my medications orally to taking them through my NJ tube, because I am still vomiting which means I’m not absorbing my medications because they’re not in me for long enough (but it’s a lot more complicated than you would think) Started bleeding a lot of fresh blood rectally (which isn’t in use as it’s sewn up, because I have my ileostomy), so I have no idea why it’s bleeding... My PTSD symptoms have been so much worse recently and not being able to sleep is just making it so much worse Awaiting an appointment for my pacemaker trial which should be in the next few months And obviously my usually pain and everyday symptoms that I deal with every day. Just a lot of stuff and it’s been taking its toll on me mentally. It’s always just one thing after another, and I have no choice but to push on despite all that’s trying to take me out, and instead of getting overwhelmed with all the crap, and focusing on all I’m missing out on, I’m choosing to see, enjoy and be grateful for the little things, even the things that seem insignificantly small ♥️
Something on my #summerbucketlist has been to go into the middle of the woods and have time for yoga. Finally I got the opportunity Frejas grandparents #mökillä ! 😍 I may be on a lot of pain medication for the #ehlersdanlossyndrome but my loose joints feel strong after #forestyoga and my soul feels refreshed. There's no substitute for medical care but I feel amazing right now. My practice definitely needs some work tho after a long break. #spoonie #natureheals #juhannus2018 #ilo #joy #summer #summercottage #fibromyalgia #latina #jewishgirl #kaunissuomi
Good luck to Helen Shepperd, Laura Corkill & Kayleigh Richards who are competing in the gruelling Isle of Man Parish Walk in aid of Annabelle’s Challenge & A Little Piece of Hope today. The Manx Telecom Parish Walk is a unique endurance challenge where competitors have 24 hours to complete the 85 mile route which takes in all 17 of the island's Parishes. Check out their live progress here: https://www.parishwalk.com/ #vasculareds #vascularehlersdanlos #ehlersdanlossyndrome #annabelleschallenge #parishwalk #isleofman
I wasn't able to stay outside long today, but I managed a few shots before making my way inside. An onion going to bloom. A baby apple. First burst of the butterfly bush. The beginning color change as the blueberries grow and sweeten. The calming smell of lavender with the gentle buzz of a busy bee. These things make me feel more whole. My backyard helps me feel more alive. A much needed distraction during this rough patch caused by a pain medication change. Maybe tomorrow will be better balanced. . . [ID of 6 pictures: 1. A close up of a bundle of small white flowers all popping from one stem. 2. One small red apple in the center of the picture with a couple tree leaves, but mostly surrounded by dry dead grass in the background. 3. Close up of a bunch of small purple flowers closely packed together (butterfly bush) with orange centers. 4. Close up of blueberries on a bush...all berries are a whitish blue, except one is more of a purplish blue. 5. Lavender on stems of bright green...one bee is on a bloom, and the background is mostly golden dry grass. 6. The tiny round buds of a butterfly bush before the purple flowers pop.]
Loving the quote “Take your broken heart, make it into art” by Carrie Fisher 💗 It’s so therapeutic to illustrate those unpleasant emotions and feelings. #anxiety is something I’ve battled with my whole life. It used to define me big time, but thanks to all the mindfulness, meditation and other personal development I’ve gone through, it doesn’t actually bother me that much anymore. But still, especially when tired, it suddenly becomes very much a present thing. So today, I’ll take it as a sign to slow down and rest 💖
I have just purchased this as I plan on soon beginning a Youtube channel and doing regular videos about my health, my adventures, life in a wheelchair, my time living in a residential home for elderly people at aged 24 years and more :) cant wait! #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #eds #gastroparesis #feedingtube #tubie #zebra #spoonietruth #spoonieprobs #spoonieforlife #spooniewarrior #spoonieblogger #pots #potssyndrome #posturalorthostatictachycardiasyndrome #mcas #mcad #wheelchair #wheelchairgirl #wheelchairlife #youtube #youtubechannel #youtuber #carehome #carehomelife #carer #catsofinstagram #cats_of_instagram #disabled
Hey saturday! 💪🏻😎 • Efter två dagars vila är det dags att mörda musklerna igen! Dock inte axlarna.. aldrig mer axlar.. usch! Den träningsvärken asså.. lång och jobbig återhämtning. Men mår bra nu iaf! 😄 • • Hoppas ni är bakis och mår skit ❤️ * * * *________________________________________ #scoliosisfighter #chronicillnesswarrior #fitnessgirl #nike #ehlersdanlossyndrome #instadaily #minresaräknas #physique #backattack #EDS #muscles #stronger #fucklagom #gymrat #krigarekrigar #workout #girlsthatlift #muscleup #health #fitness #fitspo #aldrigvila #girlswholift #träningsglädje #workoutmotivation #supplements #motivation #motivational #stronggirls #instafitness
It’s been a long few days. I ended up going to the OR for surgery yesterday morning to remove my port. I’m blessed none of my blood cultures ever came back positive this time, but the local infection of the port pocket was so bad. Not only did it have to be removed stat, but they had to leave the wound site open and pack it. Idk what it looks like right now though. I also went to IR yesterday and I’m back to a single lumen picc for a couple months. I was going to have to wait until Monday, but if I can keep it together I’ll go home this afternoon. I have to do a week of vancomycin at home, so I’m not out of the woods yet but this could have ended up alottt worse.💪🏼 #centralline #port #picc #piccline #infection #surgery #inpatient #wound #woundcare #dysautonomia #pots #eds #ehlersdanlossyndrome #mcad #mastcellactivationdisorder #pid #immunodeficiency #spoonie
March-may-June • • • Lost my self there for a bit but working hard to get back. #progess #nutrition #healthylifestyle #eatinghealthy #ehlersdanlossyndrome
Cuddle buddies through thick & thin💙
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