Ooooh I’m feeling a bit tired this morning. But I still have 2 days to go until the weekend and realistically 3 days until get a chance to have pyjama time. Until then, I must not fall asleep standing! Thanks @sunnylux for the shot #thisgirlcan #thisgirlcanclimb #climbergirl #climbinglife #climbingproblems #par#paraclimbing #paraclimbing #fallingasleep #needsleep #sle#sleepdeprived #paceyourself #pacingmyself #outofgas #outoffuel #outofspoons #spoonie #spoontheory #potssyndrome #ehlersdanlossyndrome #chronicfatigue #sleepdeprived #zebrastrong #zzz #cancersurvivor #thursdaythoughts #thursdaythrowback #tired #exhausted #outofsteam #pooped
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Innovative ways to improve your appearance and stand out in 2018: engage a plastic surgeon* to remove a combination of lymph nodes and sternocleidomastoid muscle/other neck structures to suit your taste ✨ . Remember that the larger the incision and the more bruising, the better. Asymmetrical necks are IN. Bonus points if you can't wash your hair after surgery. . *Pro-tip: Reduce your costs by getting cancer, then the surgery will be covered by Medicare!
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Fursday let’s do this 🙌🏻. Mum would like to thank you for your kind messages 🤗 we are still going to be having lots of cuddles as she’s in a lot of pain so we are doing a little less, but not too much less as mum is #zebrastrong 🦓💪🏻 like everyone who has Ehlers-Danlos Syndrome. Shoutout to all those who battle through the day and night for what ever reason 💪🏻🤗😘. ______________________________________________ #puppy #cockerpuppy #puppies #liverroan #chocolateroan #coc#coc#cockerspaniel #cockerspaniellove #dogs #puppiesofinstagram #dogphotography #puppylove #dogstagram #spaniel #cockersofinstagram #cockers #cockerlove #cockerspaniel #cockerspanielpics #cockerspaniellovers #collarandtweed #foxylady #tylerandmayatales #dogsofgreatbritain #prettyinpink #ehlersdanlossyndrome #spoonie #chronicpain #letsdothis #youcandoit #spoonielife
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🎟 RAFFLE TIME! 🎟 We’re having another go at a raffle! —————————————————— In honour of Ali’s Disney College Program acceptance, we will be raffling off a Disney Cruise Line bath set, complete with amazing scented shampoo, conditioner, and body lotion. —————————————————— HOW TO ENTER • Send us a message or comment on this post. • Entries are $1 each, via PayPal. • Purchase one or more tickets, then share on Facebook and/or Instagram for an additional FREE entry. —————————————————— ELIGIBILITY • Anyone can enter! —————————————————— END DATE 01st April 2018 around Noon (Must have 45 purchased tickets to run giveaway) —————————————————— #raffle #careitems #donation #helpagreatcause #careforrare #careforrarecarepackages #nonprofit #charity #carepackage #rare #raredisease #rareillness #zebra #medicalzebra #zebrastrong #1in2000
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This guy! My husband is my sunshine☀️. Here I am on the couch. There he is drumming. I have no energy. He has ALL the energy. We pretty much balance each other in everything. He makes me stronger. I am happy to see him do all the things I miss doing (not that I don't get jealous sometimes! 😉). He's such a vibrant human. The drum beat resonates through our house like a reassurance. He makes my darkest days manageable. I'm very fortunate. I'll never take you for granted, @sub_sides . Love you! 💜 . . . . . . . #eds #ehlersdanlos #ehlersdanlossyndrome #edslife #hypermobileeds #edsawareness #hypermobility #edswarrior #zeb#zebrang #wheelchair #wheelchairlife #disability #disabled #pain #chronicallyill #chronicillness #invisibleillness #dysautonomia #pots #chronicpain #chronicallyfabulous #edssucks #flare #zebra #zebrawarrior #spo#spoonielife #spoonie #disabledandcute #illness #babewithamobilityaid
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I've been on this amazing journey. I wasn't quite sure what to expect or how I'd feel. It's been about 8 months and I can see and feel the difference in my body. Taking care of my gut health is the #1 priority. Best part....I absolutely get a kick from sharing. Who wouldn't want better sleep, more energy and a happy mood?
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Hey guys, I have a new video up discussing my trip to Maryland and my upcoming surgery! I talk about our trip itself, what we learned at my appointment, some of my measurements and symptoms, as well as some things that have contributed to my neuro issues. 😬 You can find the link in my bio! If you like my videos, it would mean a lot if you could subscribe! 💁🏻‍♀️☺️💖 #eds #ehlersdanlossyndrome #hypermobility #heds #zebrastrong #cci #aai #chiari #spinalfusion #decompression #newnormal #vlog #youtuber #chronicillness #chronicallyill #spoonie #neurosurgery #mcas #potsie #dysautonomia #tbi #craniocervicalinstability #disability #vlogger #newvideo #blessed #grateful #hope #chronicpain
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Totally forgot to post this yesterday, whoops 😂 Was woken up by our landlord's puppy barking nonstop outside our bedroom door, and noticed two new problems -- I couldn't put weight on my left leg because of sharp hip pain and struggled to even get to the bathroom, but luckily that subsided after getting a couple more hours of sleep. My left arm also felt like it had been at least sprained in my sleep, because I'd get a sudden sharp pain when I bent it, to pull the blanket up or touch the back of my head/neck. I had my sister take me to get groceries because I woke up to a severe weather warning for a snowstorm this afternoon and we had little food so I wanted to be prepared. There was already a couple inches outside and Ryan's car is still having issues, so 😂 While using a scooter at Winco an older lady said to me "I hope you feel better soon. It doesn't look like you feel too good with those dark circles" 😂 I mean I was actually feeling relatively okay that day, aside from fatigue and sensory overload from being in a crowded store, and wasn't sure how to respond, so I just smiled and said thanks. 😅 Got lots of food, and my sister agreed to buy me a longer phone charger cuz the one that came with mine is super short. We had like 5 inches or so by the end of the night, and my arm still hurt and was preventing me from using it much so I wanted to go to urgent care but my sis had to work and Ryan really didn't want to try driving his car in the snow in its current state. Tried to ask around to find a friend who could take me, but no one responded, so..."tomorrow" then. My sister's taking me to my first ever psychiatry appt tomorrow for my autism evaluation/diagnosis! #chronicillness #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #EDS #ehlersdanlossyndrome #chronicmigraines #spoonie #spoonielife #chronicpain #chronicillnesswarrior #disabled #disability #invisibledisability #pixiecut #mohawk #androgynous #lgbtq #nonbinary #genderqueer #genderfluid #nomakeup #zebrastrong #chronicallyfabulous
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♡♡ 今日はお友達に会って リフレッシュできました☕︎✧‧˚⠒̫⃝⠒̫⃝⠒̫⃝ * さんの言葉 Via @mee_n_ote #zebrawarrior #zebralife #zebrastripe #zebraclub #zebrakatz #zebraprint #zebramats #zebrawood #zebracakes #zebrasarasa #zebrastyle #zebrafish #zebracross #zebrav2 #zebrastrong #zebralove
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This was me all day 😂 I slept 4+ hrs today as today was a HORRIBLE day with reactions. And yet I’m still exhausted 😞 And of course I’m trying to keep up with all my schoolwork from home and let me tell you my sleep schedule is not very accommodating right now 🤷‍♀️ Things are starting to get really bad with my reactions, and I still have 4 more weeks until the specialist 🤦‍♀️ Gotta stay strong 💪#ehlersdanlos #ehlersdanlossyndrome #eds #edsstrong #edswarrior #edszebra #zebrastrong #zebrawarrior #pots #postie #potsstrong #potswarrior #allergicreactions #asthma #mcas ??
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Sometimes you need make up to perk you up. Make-up has always been my creative outlet, I can’t draw or paint but I love doing stuff to my face. Make-up just makes me feel, actually skin care and beauty stuff in general makes me feel good. I guess it comes from feeling so crap in myself that when I can make my skin feel good, I feel good. . . . #eds #ehlersdanlos #edstype3 #ehlersdanlossyndrome #sub#sublaxation #sublax #zeb#zebrang #zebra #chronicillness #chronicillnesses #pots #dysautonomia #potssyndrome #posturalorthostatictachycardiasyndrome #migraineawareness #chronicmigraines #migraines #butyoudontlooksick #snapkracklepop #jointpain #pain #chronicpain #degenerativediscdisease #discdegeneration #chronicbeauty #beauty #makeup #skincare
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That’s a wrap! My Physical Therapist is moving to @mobilitychiro and when you have a gem of a PT, you move too. So grateful for the 11 months of physical therapy at SROSM. While I’m looking forward to this next chapter as an athlete, my heart will smile at where my EDS journey began ❤️ . Today was a simple realignment, and myofascial release to get me in the best position for recovery. And of course I had to do onnnnne last run 🏃🏼‍♀️ It was an interval run so that coach knows where my base is once I’m back on my feet. I felt like death afterwards but it still felt good ✌🏻 . #thebegining #movingon #newchapter #grateful #memories #5k #edsathlete #crossfit #triathlon #physicaltherapy #determination #goals #ehlersdanlossyndrome #dysautonomia #spoonie #chronicillness #zebrastrong
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I went back to work today for the first time in 1.5 years. I planned to go for 1 to 2 hours but stayed for 3. It felt weird but good being back. I had to think about every little thing and everything totally rearranged. Also I saw a tag that I had written years ago. I can’t believe that I recognized my handwriting but more than that what it looked like. After losing most of the function (which I have worked to get back) my handwriting is so different. In this picture my eye lid sag/lazy eye thing is more visible than it usually is, but not it’s worst either.
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Seriously though. I was in the shower at the gym and I just started pondering this very important question. I use my super bendy powers to reach all of my back. How do normal bendy people do It? And what about hypomobile (is that a thing?) people do It? Do they just not? Is there a large population of people with a smelly bit on their upper backs that they just can't wash? . . . . #eds #ehlersdanlos  #jointhypermobilitysyndrome #hypermobility #hypermobilitysyndrome #hypermobile  #zebrastrong #spoonie #medicalzebra #dysautonomia #ehlersdanlosawareness #chronicillness #chronicpain #myalgicencephalomyelitis #chronicfatigue #chronicfatiguesyndrome #posturalorthostatictachycardiasyndrome #spooniewarrior #disabled #disability #disabilityawareness #invisibleillness #butyoudontlooksick  #reynauds #disabodyposi #wheelchair #wheelchairaware
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The stripes are still not quite charged up today but I have been working on something very special for a customer who has commissioned me to make an applique button person frame. It is a WIP (work in progress) at the moment but I thought I would share with you all something that I find amazing and that is the process of Free Standing Lace. Unlike normal embroidery that is stitched on to fabric, free standing lace designs leave you with a piece that is independent and holds itself together. With beginning life on the pc, transferred to Jeff,( yes, I do call my machine Jeff! lol) water-soluble stabiliser, nearly 8000 stitches, a 21-minute stitch out time and 4 thread changes, we now have a piece of mini free standing lace bunting :) #theverycraftyzebra#makersgunnamake#handmadeisbetter#bunting #craft#etsy#etsyshop#recharging#wipwednesday#tomorrowsanotherday#ehlersdanlossyndrome #fibromyalgia #spoonie #autonomicdysfunction#zebrastrong#childloss#angelmummy #mentalhealth #bpd #etsy#etsyshop#onedayatatime
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Free introductory seminar this Sunday! 12:30 - 2:00 at Chelsea Studios (151 West 26th St, 6th floor, NYC). All are welcome, diagnosed or undiagnosed. We are finishing up our first grad course for #alexandertechnique teachers - these newly qualified, seasoned professionals will be present at the event. Experience for yourself how awareness and conscious movement can help you adapt to your condition. Elevator available. We're looking forward to working with everyone who can make it! #eds #hsd #ehlersdanlos #hypermobility #chronicpain #jointinstability #dislocation #awareness #disability #adaptive #education #posture #movement #symptomreduction #painmanagement #zebrastrong
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Took a moment after work to appreciate the blue skies and sunshine. #brighterdays #sunshine #itsthelittlethings #blueskies #grateful #keepgoing #warrior #zebrastrong
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Has anyone heard about EUPATI? I was very lucky to be given the opportunity to take part in their first patient expert course which was a very exciting and unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The Course was a mixture of independent e-learning coursework and face-to-face training events over a 14-month period and I graduated in 2016. You can read more about this awesome organisation and the things they offer here 👌🏻: https://www.eupati.eu
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I told him he can get a treat with some change in early he’s trying to figure out what he has enough for that is reasonably healthier. Because I said no cheesy‘s and crap like that lol. He chose some kettle cooked chips and a blue sky natural cola. #errand #spendingtime #myguy #myson #betterdays #spoons #grocerystore #casualphoto #zebrastrong
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Me #theotherday trying to be in a normal person outfit with bracing over top and underneath of course. I put on these jeans so I could convince myself that I should throw them out but they ended up being not too bad and I thought hey I’ll keep these ones they have some stretching them on a good day I could probably wear them over talk my braces and compression socks. I wasn’t hurting too badly that time and it felt good to be dressed like this again. I had been feeling a bit uneasy about my weight gain. Not that it’s my biggest problem but I’m kind of thinking to a bit of vanity here because I do love fashion and dressing up and I’m aching to do more of it and I’m trying to promote my music so it’ll be the reason. I’m human w feeling and dreams anyway so yeah.. but I’m happy that I still fit the size one jeans. My face is of surprise. I didn’t think I would I suppose I just filled out In the right places (it’s not too bad) which is good because before I had gotten so thin and I lost my shape. #jeans #dressycasual #ilovetodressnice #likeoldtimes #stillok #betterdays #doitwhileyoucan #spoonie #ehlersdanlossyndrome #ehlersdanlossyndromesucks #fightlikeazebra #zebrastrong #dazzle #ehlersdanlossyndromeawareness
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3 years ago today Colton was in the hospital....and today he is battling the flu, but this time from home! I'm so beyond grateful that he seems to have a mild version and has not ran fever in a couple of days and is feeling so great! Still has a cough and we are still keeping him quarantined, but thanks for all the prayers! They are definitely being answered. Feeling blessed! ❤️❤️❤️👊🏻 #flusux #raredisease #pediatriccvid #immunedeficiency #warrior #zebrastrong
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Quick trip downtown for preop testing and so many anxious thoughts were running through my head in this picture. I wanted to go over the plan for tomorrow’s surgery with the Dr and make sure everything was all set, ask a few questions, basically grasp for control. The Great Healer then reminded me of His sovereignty and I humbly prayed for peace... and then bumped into my surgeon in the hallway. He had planned on contacting me later to go over last minute details and answered every question I had without me even asking. 🤦🏼‍♀️ We can’t control life’s circumstances, but we always have control over how we respond to them. Today, I choose faith. Not a sports related post, but a moment in this journey I certainly don’t want to forget.
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HE’S BACK!!! 🎉 After three weeks of being apart, I’m finally reunited with my (very jet-lagged) boyfriend!!! Although I was still in lots of pain while he was visiting, his presence was very comforting and a wonderful distraction from how awful I’ve been feeling. It’s now the Year of the Dog in China, so Chris brought me back this adorable dog (as I’ve said before, he certainly knows how much I love anything dog-related)! While I wish that this didn’t all take place in a hospital setting, we still made the best of things (as we always do) and cuddled while watching The Office! ❤️ I’m looking forward to being with him again today, since things actually went downhill soon after he left: I had my first middle-of-the-night bag leak, which was frustrating since I had already changed my bag yesterday morning. 😩 Oh well — unexpected bag changes are inevitable with an ostomy... 🤷🏽‍♀️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #truelove #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #asthma #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
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🦓I want to inspire awareness for a cure for #EDS 🦓 #AwarenessIsEverything
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No one is you and that is your power baby girl! #zebrastrong #kind #loving #strong #skipstoherownbeat #blessed
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Taking this sick day to organize my paperwork and pressing projects. Looking over my medical records. A gentle reminder to myself that my exhaustion and illness is valid, chronic, and inescapable. And yes, sometimes I pee a little. #human #ehlersdanlossyndrome #eds #hypermobility #chronicillness #chronicpain #mentalhealth #mentalillness #bipolar #anxiety #yoni #migraine #anemia #POTS #spoonie #mastcellactivationdisorder #mcad #shepersisted #zebra #zebrastrong #exhausted #tired #determination #selfcare #understanding
26 2
Compassion ✨ Patience 🙏 Love ❤️ #ChronicLoveClub @jaypeeswing
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I feel very content today, had a phonecall with my sweet physiotherapist about my appointment with occupational therapy today and she took away some of my nerves and worries. Work went well and went to the car wash where I took an okay selfie while waiting for my turn =)
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🌟Day 2 BOGO: Buy AromaTouch, Get Marjoram!🌟 . Yesterday’s theme was oils for de-stressing and today’s theme is for support of painful and aching muscles! . 💧AROMATOUCH combines the unique benefits of oils known to provide relaxing and comforting effects. AromaTouch combines our essential oils of Cypress, Peppermint, Marjoram, Basil, Grapefruit, and Lavender essential oils in a perfect blend that adds many important benefits to various massage techniques. . 💧MARJORAM is also known as “wintersweet” or “joy of the mountains, ” Marjoram was known to the Greeks and Romans as a symbol of happiness. In modern applications, Marjoram is valued for its calming properties and its positive effect on the nervous system. . A few times a day I love to use deep blue rub on my hands and add a couple drops of Lemongrass for connective tissue support and a couple drops of Marjoram for inflammation. . If you have muscle aches and pains, this BOGO is for you. Just $26 for the pair with your wholesale account. . No wholesale account? No problem. Message me and I’ll be happy to help. . Much Love all! 💜💜💜
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Three suitcases, one laptop bag, and one handcycle later, I’m on my way to Walt Disney World for Princess Half Marathon Weekend! Yes, that was all for me and my medical supplies. I better tip the bag porters and bell hops well! 😅 #spoonielife #rundisney #princesshalfmarathon #marathon #marathoner #halfmarathon #handcycle #abilitynotdisability #zebrastrong #eds #cvid #dysautonomia
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This is me #practicing #walking straight forward with my feet with a bit more weight in the front of the feet. It is harder than you think to learn the body a new way of walking! I remember getting teased for walking with my feet outwards when I was a kid. I didnt fit in the "genderframe" with my #clumpsyness and walking. Since I had my amazing children I always have somekind of #pain due to my genetic #connectivetissue #disorder #hEDS or #ehlersdanlossyndrome. Hopfully a new body posture together with other things will decrease my pain in the hips, legs, knees, back, neck, shoulders and head and that I dont get so #tired from walking. Every day is different often I dont notice the pain that much but otherdays it drains me of energy, but I have hopes for the future! #fatique #physiotherapy #painkillers #invisbleill #EDS #geneticdisorder #iwasbornwithit #chronicpain #hypermobility #zebrastrong #edsawareness
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After a year of fighting for this, it seems like HSE is going to agree upon a wheelchair. We are lenient towards a powered chair but not sure the Physiotherapist and the Rheumatologist are going to give an okay. So I'll hear more in one to two months. Cross your fingers for me ❤
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Was feeling happy to have been able to do a little #makeup And put on some #jeans which is rare, and go out even if just for an #errand . It’d been a few bad days flare before. #mirrorselfie #betterdays #somespoons #zebrastrong #ehlersdanlossyndrome #complexillness #coldoutthere #dressedwarm #winterfashion
11 0
Having a really hard time lately, I was admitted recently due to extreme pain and vomiting due to that pain but when I saw my pain management doctor today he said that none of my problems are related to any of the medical conditions I’m currently dealing with and basically told me that he wants me off all opiates and thinks mindfulness and PT will fix everything and reset my body which is totally unrealistic and dangerous with my adrenal insufficiency. I’m praying that God leads me through this storm and I Trust in Him that He will guide me through this raging ocean storm. If you all could please pray for insight and understanding of this doctor or other healing, helpful doctors in the near future that would be so amazing and appreciated. 🤟🏻-Mandie #tayasmith #hillsongunited #oceans #oceanswherefeetmayfail #painmanagement #eds #ehlersdanlossyndrome #zeb#zebrang #zebra #rare #raredisease #chronicillness #chronicpain #prayers #prayerrequest #prayerworks
32 2
Started drawing my Totoro mouse pad, then played with the basic blocks a bit to create new creatures. It’s interesting what you can learn about a character by drawing it. • • #Totoro #dra#draw/a> #drawings #draw #art #sketch #sketchbook #sketching #artist #drawingstudy #penart #penartist #ink #ehl#ehlersdanlossyndrome #ehlersdanlos #EDS #zebrastrong #zebrawarrior #spoonielife #chronicillness #chronicfatigue
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Met with the diabetic nurse she was really nice and clever. Not all inside the box and close minded. listened to my complex situation as it’s not just blood sugar and carbs I have to watch there’s gi motility, food sensitivities and chewing etc.. but she helped me with some ideas I hadn’t thought of. Didn’t expect that I get quite cynical being complex and unusual feeling like no one‘s going to understand me why bother. #grateful #forgoodpeople #diabetes #gimotility #tmj #ehlersdanlossyndrome #complexillnessanddiseasemanagement #zebrastrong
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Earlier this week my specialist told me it’s not lupus. She’s weaning me off the medications. I am both elated and terrified. It was part of my identity. It was the thing that made my body make sense to me. But now there is a new disease, a new identity for me to try on like a coat. It feels like it fits, it feels like it’s comforting and like the world makes sense when I wear it. But that’s how I felt about the last one. So I don’t want to get too comfortable. I don’t want to learn how to make sense of everything all over again just to find myself back here, 4:12 am in 2 years time. So I’m trying to wait it out. I’m waiting to feel the joy, the confusion, the acceptance, the pain. I’m waiting and I’m trying to stand my ground and not zip this coat up too fast, just in case it’s not mine to own.
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Like with all matters of the heart, life is too short to settle for anything that doesn’t bring you fully alive. • think bigger. • love bigger. • be bigger. I dare you to believe in yourself. You are worthy of all things magic 💫
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I decorated my neck brace the other day! 💁🏻‍♀️💖 Shoutout to @spoonfullygraceful for the inspiration. You are an amazing young warrior!😘 I used sticker jewels off Amazon and they are actually holding up really well! Im not completely sure if I will keep them forever just because my dog’s fur keeps getting stuck up underneath the gems. 😂 We will see how it goes! 😬🙈 I also cut some of the foam padding from the front of my brace and added to the back for more support. The neck brace helps so much with symptoms, but there’s a piece in the back that likes to put pressure at the base of my skull where a lot of my pain is. However, this little modification has helped a lot and things are going better now. 🤗 #eds #ehlersdanlossyndrome #heds #hypermobility #zebrastrong #chronicillness #chronicillnesswarrior #chronicallyill #potsie #dysautonomia #mcas #tbi #braininjury #chiari #cci #aai #girlswithshavedheads #shavedhair #pixiecut #shorthair #blu#blueeyes #gems #bedazzled #girlwithglasses #glasses #blueeyes #grateful #blessed #choosejoy
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Advocacy never sleeps. Rare Disease Day is one week away and I am determined to make sure it is a breakthrough event. California, the Golden State, is going to set the gold standard for Rare Disease advocacy. Look out, world. #advocacy #warrior #stayingaliveismyhustle #rare #raredisease #zebrastrong #NORD #RareActionNetwork #rarediseaseday #whatsyourrare #oneinten #wematter #listen #payattention #goldenstate #goldstandard #cal#caligirl #cali #california #strong #breakthrough #alive #hypopara
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