➡️ SWIPE LEFT! 🙏🏻 MAY is EDS awareness month, thanks to the amazing work of the @ehlers.danlos society! They helped me understand and validate my lifetime of illnesses under the umbrella diagnosis of hEDS. Several individuals have recommended that I separate my personal story from my professional social media, but THIS is my story. My work here @strongward.effie.fit (fitness journey turned professional natural bodybuilder turned custom competition suit designer) has been made possible by my efforts and commitment to cope with, manage, and overcome the many setbacks I've had with my health since childhood because of hEDS - only diagnosed in the fall of 2018. To learn more, watch my interview PINNED to my profile, visit the EDS Society website linked in my bio, or simply DM me. I don’t and won't post to social media often, by choice as I am not seeking pity or the like, nor do I care to lament my daily struggles. I cope and manage by showing up - preferably with a smile - and taking care of what I can: myself, my family, my mother, my home, and my part-time "as able" business. I am living my best life in the ways each day unfolds. I won't post on this topic often, but will share updates as they pertain to my availability. Being a creative and artistic soul, I am delighted to share my talents in supporting others through my design craft. 💪🏻❤️ Please let me know how I can be a design ally to you in your competition goals! ✨ My schedule is filling up fast and I'm already booked out through the beginning of July! 🙏🏻 Thank you to every athlete I've been blessed to dress and continue to support! I truly appreciate each and every one of you! #ehlersdanlossyndrome #EDS #hEDS #medicalmanagement #medicalmonday #invisibleillness #invisibledisability #alterabled #priorities #dontwishforitworkforit #EDSathlete #INBF #WNBF #naturalbodybuilding #takeagencyoveryourcircumstances #customsuitdesigner #customtrunks #bodybuilding #competitionsuits #bikini #figure #physique #classicphysique
I’ve been busy with @tamingthezebra and @stripedsolutions for many months now. We’ve been working to put together all of the information and education we can from the brains of rehab therapists to other providers and patients. Today I went out for a morning mountain hike with 1,000 feet of vertical gain over two miles before heading back down. It was my first hike with elevation gain in almost seven years that I did not have functional neurological symptoms heading upward! I am so excited to have more access to my body than I have in years. I’m excited to see where this takes me. I’ve been progressing my own work with others and myself with neurological and vascular manipulation, fascial counterstrain, and frequency specific microcurrent (FSM.) I have been working to create FSM protocols for diagnoses specific to our connective tissue population and have seen some great changes in myself and others. The work I’ve been simmering in and have been synthesizing for our population will eventually be released through @stripedsolutions with our launch next month. I am so excited to have others learn why they are experiencing certain types of neurological symptoms with HSD/EDS and also treatment ideas with long term management in mind. We finally have a platform to release the “why”’s behind what we are experiencing. Of course we will also talk about movement strategies and other related issues. Having control over my body again feels amazing but has also tossed me into a new life of discovering who the new future me will be. I do hope to post more of my adventures on these platforms ❤️💪🦓🏃♀️ #zebrastrong #zebrawarrior #zebrarunners #heds #hedsawareness #hedsawarenessmonth #edswarrior #edsstrong #hedswarrior #hedsstrong #butyoudontlooksick #ehlersdanlossyndromes #ehlersdanlossyndrome #myedschallenge #zebraathlete #edsathlete #hedsathlete #edsawareness #edsawarenessmonth
Day 3: Zebra Strong. I love to run, I love to lift weights. I can’t always train the way I want to, I’m slow and getting slower. Sometimes I need extended rest periods, like a month or more, sometimes I can push through. Learning how to live and push and meet my goals is a challenge but a challenge I’m happy to be able to do. #myedschallenge #myhsdchallenge #ceds #ehlerdanlossyndrome #edsathlete #keepmoving #run #zebrastrong #togetherwedazzle @ehlers.danlos #edsawareness #relentless
#myedschallenge #myhsdchallenge #eds #ceds #zebrastrong #togetherwedazzle #edsathlete #edsawareness
It's Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month. Why the zebra? 🦓 Medical students are trained to consider the more common and typical diagnosis rather than the unexpected one: “when you hear hoofbeats, don’t expect a zebra.” The zebra was chosen as our symbol because individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder are considered unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.” In my case, it took 15 years from symptom onset to receive a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). Hence, awareness time! P.S. Yes, I have a silly zebra costume. #zebrainboots Source: @ehlers.danlos
Embodied in the graceful strides of figure skating, Hannah’s journey through sports epitomizes strength and determination beyond measure. From a young age, she immersed herself in the graceful world of figure skating, fueled by a passion that knew no bounds. Yet, behind the gliding elegance on the ice lay a silent struggle with invisible pain. “Seeing other skaters effortlessly endure hours on the ice without visible pain made me question if my pain was normal,” she shares, a poignant reminder of the isolation she felt amidst her athletic pursuits. Despite the elegance of her figure skating, Hannah’s path through sports has been marked by unseen struggles and relentless determination. “My passion for skating slowly died due to the physical toll competing had on my body,” she reflects, a testament to the relentless challenges she faced. Yet, even as the ice became a source of both joy and anguish, Hannah persevered, unwilling to let go of her dream. In October 2023, validation finally came in the form of a diagnosis of hEDS, bringing with it a sense of relief and affirmation. “The diagnosis brought immense relief, validating that my pain was real,” she shares, her journey marked by moments of resilience and self-discovery. Though horse riding and football now reside in the realm of cherished memories, Hannah remains steadfast in her commitment to reclaim her place on the ice. Her story is one of unwavering determination and unwavering spirit, a testament to the resilience of EDS athletes who refuse to be defined by their condition. As she sets her sights on the future, Hannah’s dream of returning to the ice burns brighter than ever, a beacon of hope for all those who dare to defy the odds and chase their dreams against all odds. Hannah's determination to return to sports despite having challenges can EDS present is truly inspiring. She embodies resilience and strength, inspiring others along her journey. Thank you, Hannah, for sharing your story with us. Keep pushing forward, never giving up on your passion for sports. Your unwavering spirit shines bright, offering hope to athletes everywhere. #heds #ehlersdanlosawareness #edsathlete
May is Ehlers Danlos Awareness Month. I have Classic EDS. Unfortunately, I wasn’t diagnosed until I was in my 40’s. Fortunately, I was diagnosed and can now make sense of symptoms and work with my providers to control them as much as possible. Over the next month I’ll be sharing information and spreading awareness. #myedschallenge #myhsdchallenge #eds #edsathlete #zebrastrong #togetherwedazzle #keepmoving #awareness #knowledgeispower #fragilenotbroken
Dreaming of race season. Thanks to @thefeedme for all my fuel to help me stay active and alive. #fueledbythefeed #feedathlete #feedmeseasonstaples #feedmechallenges #run #walkifyoucantrun #eds #edsathlete #zebrastrong
3.5 runs. Absolute bulletproof snow. The beavers were like a concrete wave pool frozen in time. Unforgiving. The groomers were whiteout and impermeable corduroy. The new snow fall set like ice in a hurry this week. Not necessarily fun, but every day on the mountain is a great day...even if I wimp out after an hour. Too painful to party when it's this rough. But thankful for the time on the mountain nonetheless. Still love the new skis. They got some Big D Energy. @icelantic_skis The video was the one slip of sun during the hour. It was really whiteout. #newspoons #icelanticskis #Whiteout #everydayisagreatday #twolegsthatwork #happycamper #skibunny #hEDS #POTS #MCAS #CCI #edsathlete #edsathletes #ehlersdanlossyndromeawareness #hypermobilityspectrumdisorders #zebrawellness #zebrastrong #edsstrong #disabilityawareness #disabilityinclusion #KnowYourLimits #shredgnar #shredgnarice #notapowderday
🦓 Meet Robin, an athlete with classical-like EDS whose journey through dance is a testament to determination and passion. “I’ve been dancing since the age of 4 - a combination of dance, cheer, and gymnastics,” she shares, her love for movement evident from a tender age. 🦓 Despite enduring frequent injuries and hip dislocations, Robin’s love for dance never faltered. High school brought a temporary halt when stomach issues forced her to step away. “I had to stop dancing until college,” she recalls. “Dance became my minor,” she shares, seizing the opportunity to reignite her love for movement. Fueled by the encouragement of her which soon blossomed into a major alongside a minor in exercise and sports science pre-physical therapy. In her final college years, Robin faced additional challenges with diagnoses of gastroparesis and POTS. “My dance teachers created accommodations for me,” she acknowledges, highlighting the unwavering support that propelled her forward. With accommodations such as seated performances and choreography, her spirit remained undaunted. Graduating cum laude and inducted into the honor society, Robin’s journey stands as a testament to strength and dedication. As she sets her sights on physical therapy school, her aspirations to merge her love for dance with hypermobility in performing arts and injury prevention illuminate a path of hope and inspiration. Robin’s journey epitomizes the strength and courage of athletes with EDS. Her unwavering determination and perseverance in overcoming obstacles serve as a beacon of inspiration. Through triumphs and setbacks, Robin’s story illuminates the indomitable spirit driving athletes with EDS to pursue their passions with unwavering resolve. As she continues forward, Robin’s impact inspires countless others to defy limitations and embrace their own strength, forging a path of resilience and possibility. #ehlersdanlosathlete #cleds #ehlersdanlossyndrome #ehlersdanlosawareness
Happily covered in mud dots again! 🤗🚵🏻♀️ First mtb bikeride to @brunkollen this year🙌🏼 To sum it up: Respectfully greeted by all the gravelmen! 🚵🏻♂️🚵 Reunited with the 🐻😍 Soft, muddy gravelroads shape strong legs👌🏼 Just one chain jump off incident😜 Needed to make adjustment on technique as I am cycling with my modern forrest gump stability support for my ankle, tomorrow will show if I was to unpatient🤔🙈 But born i April, how could I resist a premiere ride this sunny day of Spring?!🌱☀️🐦⬛🙃🚵🏻♀️ I always find my happy on to wheels! L o v e ☀️ S a r a #gravelgirl #gravelgrinding #gravelbikeworld #abilitynotdisability #edsathlete #possibilitymindset #mtbadventure #norgebilder #norgeidag #brunkollen #markaglede #livskvalitet #aktivhverdag #takk #mentalstyrke #lifecoachinghappiness #stressmestring #stresscoach #outdoorlover #funfriday
⭐️ Welcome to the Dazzle Athletic Association! (Formally known as the Dazzle Athletic Club)🌟 Whether you’re an athlete, supporter, or advocate, there’s a place for you here. In the DAA, we focus on those with Ehlers-Danlos Syndrome. While our spotlight shines on EDS athletes, our advocacy efforts reach far beyond. We’re dedicated to fostering an inclusive community where everyone can thrive, regardless of their condition. Join us in championing diversity, empowerment, and inclusion in athletics! Submission link in bio! 🦓💪 #eds #ehlersdanlosathlete #adaptiveathletes
A few pics from training over the last few weeks - taking a bit of a break from social media on my phone but you can still keep up with things on Strava! Kicked off the 12 week countdown a fortnight ago and it's starting to get real .... the long runs on the build weeks are getting loooooong! I've really enjoyed the technical runs on the treadmill so far, but am breaking in some new insoles as I had started getting unexplained foot pain and they were ~2.5 years old, so well overdue a change! So far so good, today was the first day with the first set that I'm trying. Today was also the day that my portable rechargeable fan ran out with 6 minutes left to go of high intensity intervals .... I was NOT a pretty picture when I finished (see pic 4!) #Fail Looking forward to a 4 hour run on Sunday, haven't done one that long in about 18 months so my coach has suggested taking it easy and jeffing as needed. 9 weeks to go until @endure24 folks! I'm aiming to hit the big 5-0, 50 miles covered in 24 hours. I'm currently looking for a couple of people to help with crewing over the weekend - just making sure I'm doing OK and preparing food/water bottles/etc. LMK if you're interested! This year I'm fundraising for the awesome peeps at @breathworks_mindfulness who support people who live with pain and illness to live full and active lives through training in mindfulness and compassion, something I've benefited enormously on my journey with #EhlersDanlosSyndrome >> Link in bio to sponsor! . . . . . #Running #RunnersofInstagram #UltraTraining #TeamMyProCoach #MyProCoach #UltraRunning #UltraRunner #UltraRunnerInTraining #VeganRunners #VeganRunnersUK #ThisGirlCan #TGCSuffolk #ThisGirlCanSuffolk #ThisGirlCanUK #Breathworks #EhlersDanlos #EDS #EDSWarrior #EDSAthlete #EDSAthletes #PureGymIpswichRavenswood
🔍 Athletes with Ehlers-Danlos Syndrome 🔎 When you search "athletes with Ehlers-Danlos Syndrome," who comes up? These three athletes right here! From top to bottom, @triallysa, freshnessuk, and @enedinastangerramos are excelling in their activity or sport while living with EDS. We want everyone to recognize the hard work and dedication each of these ladies put into their sports every day. . We want to see more names come up when "athletes with EDS" is typed into your search engine. Having EDS does not mean you cannot be an athlete. Here are known three of the many athletes with Ehlers-Danlos Syndrome. 🦓💪🏻 . #ehlersdanlossyndrome #eds #edsathlete #edsawareness #chronicillnessawareness #strongwomen #athletes
Another month another operation. This time a box and battery change for my pacemaker. I’m very sore today and feel like a horse has kicked me in the chest but I went back to work regardless. Got to keep that sickness record down!!! #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #pacemaker
St Patrick’s Day run followed by a plunge ☘️ #fueledbythefeed #feedathlete #run #womenrunning #edsathlete #coldplunge #coldexposure #train #keepmoving #zebrastrong @thefeedme @thecoldpod #basementgym
Workouts fueled by @thefeedme #fueledbythefeed #feedathlete #thefeed #sponsoredbythefeed #activespring #workout #run #edsathlete #zebrastrong
This is 6 months of consistency. The maroon pants are the first month the picture above it is current. Consistency has been key. Start low, go slow, you just need to do 1% better than the day before, and the changes you see will blow your mind. #edsathlete #dysautonimiawarrior #disableweightlifter
One month changes with lifting at my goal weight. I am seeing so.much muscle being built!!! I am so excited #edsathlete #disabledweightlifter #sickbutstrong💪 #potheadathlete
Get your hydration on ❤️ I use Nuun for running, walking, everyday hydration. Keeps me going. @nuunhydration #nuunlife #nuunambassador #hydrate #makeyourwatercount #pots #eds #edsathlete #ehlersdanlossyndrome #sale #friendsandfamily
Habit is overcome by habit. Not sure who said it, or where I heard it, but it hits home. ⬇️ My habit had become to skip the hard workouts in favor of gentle movement. It was necessary for awhile and still is sometimes. But I was losing muscle, fitness, and motivation for the harder stuff. I started slow. It’s been three weeks of three days a week lifting heavy and three days short HIIT cycling. And today, I finally just got up and headed to the bike. No thinking about it and no procrastinating. Exercise feels like a habit again. #bettysquad24 #bettydesigns #habitforming #fitnessmotivation #edsathlete
Throwback to 5 years ago when the prosseco/orange juice combination didn’t try to kill me 🤷♀️🤣😅 #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
First time ski touring in 3+ years. I'm in the pink pants and this photo accurately describes how it went (swipe for close up) 😆 I've had surgery (or been recovering from one) every winter since 2020, thus not allowed to ski. Not to mention finding a touring setup compatible with my body is like finding a needle in a haystack. Here's hoping that next winter, progress will be made 🎿
This little bastard just saved my life ❤️ I had a mild allergic reaction on Friday night which although uncomfortable, didn’t require an epi-pen. The culprit was haribo tangfastics. I’m mostly just sad that I have another one of my favourite things on the allergic list. Tonight’s cause is unknown. At the time I was drinking pure orange juice and Prosecco to celebrate our 5th wedding anniversary. I felt it almost immediately and then Archie started going crazy. My husband administered the pen within a minute and thankfully it worked and I have avoided an ambulance. Now I get to spend the next few hours feeling like I am running a marathon 😭 the worst thing is not knowing what caused it. Do I never have orange juice again? Prosecco? MCAS is such a shitter! #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #epipen #anaphylacticshock
Oops. My finger slipped 🤷🏻♀️ Chances are incredibly slim that I actually get in, so there’s that. #nycmarathon #run #womenrunning #eds #edsathlete #lottery
More from #Spartan2024 Got to live like an action hero for a while! The races get harder sometimes. As I age, I notice brand new EDS symptoms. However, this race I felt the strongest I have in a long time. For me, that's a win. #SpartanRace #SpartanRaceDodgers #DodgersStadium #Spartan #EDSAthlete #DisabledAthlete #DoToughShit #ICanDoHardThings #OCR #Fitness
When you’re feeling like a badass, but a post ride nap in the back of your van sure does sound appealing🤣 #handcycle #paracycling #ultracycling #ultraaf #cycling #cyclinglife #cyclist #teamcatapult #fitover50 #handcyclecoach #raceacrossthewest #raceacrossamerica #raredisease #cvid #eds #edsathlete
It’s taken me a week to build up the strength to post this. It disgusts me to look at but I finally have the hope that it might get better. The consultation didn’t start well. The first thing he said was “I cannot do the operation you have been referred for, the hole they left when they went in and saved your life will be tethered so I cannot do the lift”. Two things immediately jump out there. Firstly is that he came straight out and said he couldn’t do the operation, but then before I could even process that he follows it up with ‘it saved your life’. I know how sick I was when I was taken down to theatre for the first emergency debridment but I don’t know know if you know what I mean? I know the words but I didn’t really believe them until he said it. I’ll save you the next 15 minutes of your life and get straight to his final conclusion that he can perform liposuction on the fatty lump side and then subject to how that turns out, then do a second operation for skin removal on the same side. He cannot promise how it will turn out, cannot rearrange my belly button and cannot do anything about the scarring. But as I said I couldn’t care less about the scars, it’s the skin and more importantly that lump of fat. So hopefully it will improve after the first operation. We will see! #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
Anxiously waiting to see the plastic surgeon about my stomach reconstruction. The thought of standing there and being judged is pretty overwhelming. I am telling myself that they have seen much worse (very true) and that they won’t care about my wobbles (they won’t) but I still don’t actually feel it. What if he says they can’t do anything? What if they tell me it’s not that bad? What if I am left looking like this with nowhere to go? #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #reconstructivesurgery
@thefeedme delivery day ❤️ #fueledbythefeed #feedathlete #hydrate #nuun #nuunlife #protein #eds #edsathlete #thefeed #run #womenrunners
big day for people who love the color pink! (me) #vegan #runner #ehlersdanlossyndrome #edsathlete #plantbased #veganathlete #fortheanimals
When you finally get your World Champion jersey in the mail!😍 I’m not going to lie, I like that title. If we don’t celebrate our own accomplishments, who will? Never be afraid to celebrate yourself! 🎉🎊 #handcycle #ultracycling #raceacrossamerica #worldchampion #wheelchairathlete #paracycling #handcyclecoach #ultraaf #fitover50 #fitness #enduranceathlete #cvid #eds #edsathlete #selflove #teamcatapult
easy Sunday run • 4.5 miles @ 9:42/mile #run #runner #runoutside #vegan #veganathlete #plantpowered #ehlersdanlossyndrome #edsathlete #celiac #autoimmuneathlete #womenrunners
Love these water bottles from @thefeedme ❤️ #fueledbythefeed #hydrate #stats #nycmarathon #strava #feedathlete #eds #edsathlete #zebrastrong
Two weeks, y’all. Two weeks!! 🤯 I can’t believe I finally get to see the results of @ckdnewsdoc ‘s thousands of hours of work on the documentary about me soon. He sent me a sneak peek of the trailer for the film last week and it’s going to be something special. Wow. Just wow. I got so emotional watching it for the first time (especially when I heard my coach’s words) and that was just the trailer. It’s crazy seeing yourself in this light and I’m sure it’s going to be even crazier seeing it on the big screen. The time, effort, and care @ckdnewsdoc has put into this has been beyond impressive to watch. He went to great lengths to learn about my rare diseases, treating me, my crew, my friends, my doctors, coach, and our entire family with nothing but the utmost respect during the months he followed me with camera in hand. I’m so excited to finally see the finished product. Next order of business, to find something to wear. What the heck do you wear to a documentary film premiere about you, especially when you’re a person that spends 99% of her life in workout clothes?!?!🤯 Luckily, I have at least one friend that knows a little something about fashion and has me set up with a personal stylist. Stay tuned to my stories tomorrow. Maybe I’ll post some shopping photos. 😎 #handcycle #paracycling #ultracycling #ultraaf #raceacrossthewest #teamtifosi #teamcatapult #raceacrossamerica #handcyclecoach #shatteredexpectations #primaryimmunodeficiency #ehlersdanlossyndrome #zebrastrong #raredisease #chronicbadass #wheelchairlife #wheelchairathlete #edsathlete
So happy to be back for another year! Thank you @nuunhydration #nuunambassador #nuunlife #hydrate #run #ehlersdanlos #edsathlete #zebrastrong #keepmoving #legacy
Done ✅ Luckily they didn’t have to ablate as the EP studies showed the best management was medical. It did however show a hole in my heart which apparently is perfectly normal and 1 in 5 people have it but still….. Wowzers. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
Today marks another day 1 for an 8 week challenge. 3 years ago, I was 240 pounds (the first photo is at 215, after losing 25 pounds) size 18 (BARELY), and a 2x shirt. Today I’m 154, size 8 and sm/m shirt. It’s been a long road, full of firsts, lasts, failures, and successes. . I owe a lot of my transformation to @1stphorm , for showing me there is another way and introducing me to the best community of people on this planet. But at the end of the day, they provide the tools. I did (and will continue to do) the work. Check my link in my bio if you’re curious about their products. . I’m looking forward to this year because I have 2 commitments: Fitness, and Finances. That’s it. I’m focused on growing my real estate business to surpass $10M in annual sales & become 100% debt free. And also, tone my body & dial in on my nutrition in ways I’ve never done before. In putting my focus on these, it will ripple effect into the other important areas of my life: helping my community, and my friends and family. . The last few years I’ve always made excuses and justifications for the distractions. Ive always fallen off the wagon and backslid because I had too much on my plate and wasn’t strong enough to say NO. the theme for 2024 is “NO.” I’ve never had the ability to truly focus, but always blamed it on some external force. Not anymore. I am in control of my life, my decisions, my actions, and my mind. . I’ve accomplished & overcome a lot in my 29 years, and as I enter my 30s, I couldn’t be more optimistic. I may be the only ‘94 baby excited to turn 30. But I think aging is beautiful and full of opportunity. I feel ready. I feel fear, but I also feel calm. This is MY life and MY time and I am claiming it! I highly suggest you do the same. Love you ❤️ #iam1stphorm #legionofboom #wedothework #75hard #livehard #edsathlete #mindsetmattersmost #essentialism #1stphormathletesearch #1ptransphormationchallenge #1stphormtransphormationchallenge #lfg
I’m super excited to share that the Hunter Adults Financial Collaborative (@hafc_au) are providing business mentoring and start-up support in these crucial early phases of @intelligent_action. 🙏🏻🥹 Such wonderful news to start the year with and such an exciting and motivating way to plan forward into 2024. 🚵🧠 One of the reasons I started @intelligent_action was to provide more stability and flexibility in my own life. Living with a connective tissue disorder and an autonomic disorder is its own full-time job. Plus, the older I get the more I want to use the skills I’ve learned through my unique research, media and health history to empower others to work with and extend their unique capacities as well. In developing an online course on mind-body-performance skills for mountain bikers as a first offering, the hardest thing I’ve found isn’t creating content. I’ve done that stuff for years. I wrote a PhD on the topic. Where I need help is the business skills. And to be able to be super efficient in how I implement those skills. This support couldn’t have come at a better or more welcome time. Look up @hafc_au if you live in the Hunter region and have support to offer or know someone else whose ability to secure stable employment or start their own business is contingent on overcoming additional challenges or disadvantage. I hope to be able to offer my own skills in this way in the future too. 🫶🏻 #hunteradultsfinancialcollaborative #HAFC #huntervalley #lakemacquarie #Newcastlensw #newy #awabakalcountry #wonnaruacountry #worimicountry #startup #startupbusiness #businessgrants #disability #disabilitypride #invisibledisabilites #EhlersDanlosSyndrome #EDSAwareness #EDSAthlete #POTS #DysautonomiaAwareness #2024goals #thankyou
2024 plans I am hoping for a much calmer and less hospital-based 2024 but I have realised I am waiting for 4 operations, the first (my rebooked EP studies and ablation(s) is on 10th January. I’m on the waiting list for: 1. EP studies +/- ablation(s) 2. Knee reconstruction 3. Pacemaker box change 4. Abdominoplasty Ironically that’s comparatively quite a quiet year when it comes to operations 🤣😅 #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #ablation #abdominoplastie
New year, same pill (bigger dose) #PostYourPill continues in 2024 with the same goal of ending stigma around medication and seeking help for mental health. Im not ashamed to say that my dose doubled this year - can you really blame me after the crap I have been through?! #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
What a difference a year makes. This time last year I was in emergency surgery having another washout and debridement from a huge infection after my stomach burst open! This year I spent the day surrounded by family and even managing to eat a small Christmas dinner! It’s quite often hard to see the progress I am making but today it was evident ❤️ #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
Or not….. I got there, got clerked in and when the consultant went to consent me he asked if I had stopped my medication 5 days prior. I said I wasn’t on warfarin and he said no it’s all cardiac medication not just warfarin (as I had been told) so he sent me home 😭 He apologised profusely but it’s not his fault so there was no point being angry at him. I have been waiting over a year now as they originally missed me off the waiting list! #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
Here goes nothing. Please please please let it just be a day case so I can finally start Christmas!!!! 🎄 #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete
🌚 Honouring Darkness & Embracing Light 🌞 Aligning balance and setting intentions. Perseverance and gratitude reign supreme. #wintersolstice #balance #darkness #light #gratitude #intentions #manifesting #goals #buildingdreams #dontwishforitworkforit #getoutofyourcomfortzone #honorthestrugglesoflife #hEDS #EDSathlete #setgoals #chasedreams #discoveryourpotential #selfcare #mentalhealth #mentalfortitude #advocateforyourself #resilience #discipline #consistencyiskey #fitnessforlife #strongward #iamnotmylimitations #naturalbodybuilding #fitnessmodel #model 🙏🏻 📸 Photo credit to the immensely talented @sheri_hubbs_photography
💪🏻❤️ THREE MONTHS AGO TODAY, the Pro Masters Bikini division at the 2023 INBF/WNBF NW Royal Natural Bodybuilding Championships (@nwroyal_nb) in Bellevue, WA on September 16th became an unexpected fashion show for me. Every athlete that I completed with was wearing a custom suit that we collaboratively designed together! Due to peak week, and prior design commitments, I only had 5 days to create this masterpiece for myself out of black velvet and a neon blue ombre rhinestone design. (I couldn't be on stage amongst these athletes wearing a suit designed by someone else, now could I!?) This suit concept is also my first prototype design of a convertible suit for athletes that cross-compete in several divisions that require suit changes, so the opportunity here is tremendous, and I was able to complete these prototype for another lovely athlete for the WNBF World Championships in November, but that will be featured in a future post. Every suit is 100% custom tailored to each athlete's physique and one-of-a-kind because of the vision and inspiration they each bring to the design table. I absolutely love these creations and I count myself blessed to be trusted by, collaborate with, and support these beautiful women, and friends, in their competition endeavors! We all have dramatically different stories, but we all show up to chase dreams, crush goals, and pursue a commitment to living boldly that nothing else can replace. I couldn't be more proud to be among them as a competitor and am beyond grateful to be a part of their journey to the stage. Confidence elevated through trust, communication, and collaboration! #customsuitdesigner #naturalbodybuilding #bikini #convertiblebikini #wnbfpromastersbikini #wnbf #inbf #consistencyiskey #dontwishforitworkforit #fitnessforlife #whatinspiresyou #strongward #hEDS #EDSathlete
08/12/23 I’m back! 🎉 After what happened on my last swim, I’m really proud of myself for how quickly I’ve been able to bounce back, both mentally and physically I think I’ve been able to get a better idea of what exactly went wrong, and figured out the catalyst of why things got so bad was extremely likely to be my PoTS and IST 💔 Usually, I wear an Apple watch 24/7 to manage my heart issues, which alerts me when my heart rate gets too high. When I was having issues with GPS tracking, I put my watch on top of my towfloat, but that meant that I was unable to see my heart rate anymore. I thought it wouldn’t be an issue, but I used my old fitbit today and realised why it’s absolutely crucial that I have heart rate monitoring in the water. I was easily hitting 180+ bpm with minimal exertion (likely worse because it’s so cold) so its no wonder that after swimming flat out and then leaping straight out of the water, I was struggling to breathe. I dread to think how high my heart rate must’ve been, which probably explains why I couldn’t breathe. When I’m swimming sometimes it’s easy to forget that I am a disabled swimmer and I am not, in fact, able-bodied. I need to bear that in mind and be more aware in future so that I can take necessary precautions and be careful. My PoTS has been especially bad recently, so I might also get back in contact with my consultant to have another go with some different meds. It’s so easy to let setbacks stop you in your tracks, and I have been super nervous about getting back in the water again. For a few days, I didn’t know if I ever wanted to swim again, which was an extreme reaction out of fear. But with Sam’s support and encouragement, I did a little swim tonight as he walked along the beach with me, to try and conquer my fear. The longer I left it to get back in the water, the harder it was going to be, so after a pretty shit week, as soon as I’d recovered physically, I wanted to get it done as soon as possible and I’m so glad I did because I feel so much better for it 🌊
How do you approach training when you’re coming back out of an Ehlers-Danlos flare up? Or if have EDS and you’ve taken months (or longer) off training? Getting back into training after time off is one of the biggest challenges for people with EDS and hypermobility. Why? Because 1) There’s lots more things we have to think about; and 2) We’re taking time off a lot more frequently than most people. In my 4th podcast episode, I talk about how I approach training after an acute flare up, and also after a longer period of time off. It’s pretty relevant, because I’m currently in the process of getting back into training after about a year of minimal gym time. It’s hard work 😅 but we’re getting there. Link is in my bio ⛓️ #ehlersdanlos #spoonie #zebrastrong #eds #edsathlete #edsathletes #ehlersdanlosawareness #hypermobility
Made it in! Next year is 5k’s and half marathons. #run #womenrunners #eds #edsathlete #zebrastrong #cbhm #halfmarathon #keepmoving #constantforwardmotion
Today is International Day of Persons with Disabilities so I wanted to take a second to show all the different versions of me and talk a bit about barriers. Yes I have a disability and yes, recently it has taken up a lot of my life, but as you can see from the pictures there is so much more to me than just my disability. I try so hard to stop my disability stopping me but there are still so many barriers in place in every day life. Having an assistance dog was a perfect example of this - he was fully accredited by ADUK from a registered charity yet I faced constant access battles with him. Ironically COVID did more for disability related work rights in the 2 years it took over the world than the preceding 50!!! Finally we were able to work from home, something that had been denied continually up until then! Anyway just a quick post to share the importance of days such as today which recognise disability, raise awareness and help to break down barriers that people like me still continue to face far too frequently. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #tubie
What happens when you remove someone’s NJ tube before they have proven they can tolerate food…..? I am finding returning to eating almost impossible. Things that seem okay one day have my head in the toilet bowl the next and eating anything more than a few mouthfuls will have me in excruciating pain. But there is no point seeing anyone yet because I will just be told ‘it takes time’ and ‘I need to let things settle’. So instead I shall just keep loosing weight whilst praying that I quickly find things I can tolerate. BTW this graph is a few days out of date so you can add another 3lbs lost 😞 #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie
The latest Backpacker Article is out. Not into the idea of cold-weather hiking? With a little deliberate cold exposure, you might find yourself falling in love with Winter Walks. And NO - YOU DONT NEED A COLD PLUNGE!!! 😘 Other benefits that are scientifically supported that I did not go I to in the article include: 🧊 reduced anxiety 🧊 improved quality of sleep 🧊 improved healing/recovery https://www.backpacker.com/skills/backpacking-fitness/yes-you-can-train-your-body-to-handle-the-cold-heres-how/ LINK IN BIO @hypermobilityexercisesolutions @stripedsolutions #physiologist #biomedicalresearch #sciencenerd #hypermobilityspecialist #ehlersdanlosspecialist #edsspecialist #edsawareness #edsathlete #disabledathlete #disablityawareness #disabledhikers #coldweatherhiking #coldexposure #coldexposuretherapy #coldtraining #colddip #coldshower #coldplungetherapy #brownfat #brownfatactivation #zebrastrong #hypermobilityspectrumdisorder #hypermobileeds #wintersports
I believe that the main fuel to Happiness is to be mindful in the present moment of your experiences. But dreams for the future and reflections of the past, through a filter of gratitude ☝🏼 (for what you gained, learned, overcame, won, enjoyed) is also an important part to create good terms for a Happy life🙄 Today I went down the amazing memory lane of summer 2023. I still not can’t believe I manage the HC alpes mountain climb up to the summit of L’ Arpettaz 1581 MASL!🙆🏼♀️🤷🏼♀️💁🏼♀️ 1149 metres climbing grades in 39 degrees Celcius! I DID IT!!!What an inspiring winning experience to take with me for the future🥳 I have always been adventurous and curious 🙃Loving outdoor experiences in nature and sports of all kind. But multiple health trauma due to chronic illness made me doubt the ability of my body for years, after being diagnosed with Ehlers Danlos syndrome (hEds). It is one hell of a challenge to build up physical strength again after serious illness trauma. And to do hundreds of comebacks with full motivation, over and over again. But those challenges is nothing compared to the big fight re-building the trust in yourself and your body again. To let go of the fear and believe fully that health won’t fail you like before😳🙏🏼 This mountain climb was a turning point for me. I manage so much more than I had dared to hope for this summer. Bye Bye Fear. Courage will be my future companion👏🏼 L o v e 🫶🏼 S a r a #abilities #letgooffear #trustyourprocess #ehlersdanlossyndrome #chronicillnesswarrior #edsathlete #selvledelse #personligutveckling #lifelessonslearned #vélo #gravelbikeworld #mountainclimbers #womencycling #terrengsykkel #inspiredtoinspire #gravelbikelife #attitudeofgratitude💫 #positivepeople #successstories #outdooradventurephotos #annecyfrance #alpesfrancaises
Warmups: The SECRET WEAPON for Hypermobile Lifters This 👆🏻might seem like a clickbait caption, but I promise you I’m not exaggerating when I say that learning how to warmup properly is one of the main factors that’s allowed me to continue to train over the years with my hypermobility and EDS. Do I recommend approaching warmups differently if you have hypermobility/EDS? Yes. Absolutely. In this podcast I explain why & how. P.s. it’s an older one I forgot to publish. So the dates are a little off but the information is still the same. ⛓️ link in my bio #ehlersdanlos #spoonie #zebrastrong #eds #edsathlete #ehlersdanlossyndrome #ehlersdanlosawareness #hypermobilitysyndrome
Spot the difference! See ya later Nosé José!!!! Now it’s up to me to work out what my body/new pouch can tolerate and start building up. With the support of multiple different antiemetics and pain relief. So far I can keep down jelly and cup a soups. Please recommend any foods you have tolerated well when in my kind of situation! #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie
After 3 failed attempts to get blood from my mid line and 4 failed attempts from my arms they tried twice on my feet. All unsuccessful so now they are going to try an arterial stab. I think someone could have come up with a nicer name… #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie
Day 10 and no signs of escape. My CRP rocketed and I stopped being able to tolerate my feed so they have had to start from scratch with the feeding regime as well as putting me on re-feeding vitamin IVs because my bloods went off due to so much time without any nutrition. I had a mid-line fitted yesterday so it looks like I am in here for a while 😭 #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie
Last (maybe) NYC Marathon post. It was just that good. I want to thank my amazing husband for being there ❤️ And @nuunhydration and @thefeedme for helping me with pre, during, post race nutrition and hydration. It was a magical day. I’m so thankful I can still do this ❤️ #feedmethankful #feedmechallenges #nuunlife #nycmarathon #run #walk #turtlepace #slowaf #dontevencarethatimslow #eds #edsathlete #zebrastrong #keepmoving #thankful #springenergy #foraslongasican #womenrunners #myhusbandisthebest #runningwithcoffee
The photo is upside down as I took it from above but that’s my scar 2 days post op. It’s a big one!!! My pain is still not managed and sickness is starting to ramp up as they are introducing my feed so I am not having a great day to be honest. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie #fistula
Update: Surgeon thinks I have an infection. Going for a scan ASAP. Pain is awful and the left side is quite swollen. They were also very surprised at how much it had bled (second and third picture ‼️) Been referred to the pain team who will hopefully come today. Dressing changed - huuuuge scar. Four loops of small bowel had adhered together so he removed all of them and made an entire new pouch. Dietician been and agreed not starting feed today as I am too unwell so will have a vitamin infusion and fluids and check bloods to see if anything else needs replacing. Then it will be a very gradual increase in feed. Junior doctor is finally prescribing my medicines. They are moving me to a side room ASAP as I am too difficult to manage in the bay because I need space for all the drips etc. I think that’s all. I’m peeing normally again now but horrifically dehydrated so drinking as much as I can but they only want me to sip so I have fluids up too. Of course it had to go wrong. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie #fistula
Surgery done. Ill update when I can ❤️ #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie #fistula
Tomorrow is the day I have been waiting over a year for yet I don’t feel ready and for the first time ever in approx 70 surgeries I REALLY don’t want to go in. I suppose it is natural to feel like this after what has happened in the last year but knowing that isn’t helping me. Also the fact that I will only know what the rest of my life is going to look like when I wake up, will it be a j-pouch fix and stomach sew up or a full proctectomy and permanent stoma?! I am first on the list so should be down at 9am. I’ll update as soon as I am conscious enough. Wish me luck please! I willingly accept prayers of all denominations, thoughts of good luck and dog kisses ❤️🥰 See you on the other side. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie #fistula
That’s an awful pretty medal. Post marathon pizza in bed is the best. #nycmarathon #run #walk #edsathlete #recoverytime #thankyounyc
Thank you NYC for the best marathon ❤️ And, thank you @danbodia for being there ❤️ and getting pictures. #tcsnycmarathon #marathon #nycmarathon #run #walk #edsathlete #zebrastrong #nyc #thatwassomuchfun
I can’t decide which bottoms, otherwise I’m set for the morning. 🏃🏻♀️ #nycmarathon #run #walk #letsgo #zebrastrong #edsathlete #slowandsteady #flatme
It’s really happening now! And I got to meet and get the best hug from @iamlshauntay ❤️❤️❤️ #nycmarathon #tcsnycmarathon #run #walk #keepgoing #edsathlete #slowaf
10 years in the making. 2 days!! #tcsnycmarathon #nycmarathon #marathon #run #womenrunners #eds #edsathlete #memories #keepmoving
I have a surgery date! A week today I should be in theatre finally getting the fistula fixed and this huge hole in my stomach sewn up! They have bought forward the date as originally it was going to be the end of this month but with the illness last week my surgeon had put on an extra list and I am going to be operated on! It’s the first time I have really been anxious about a surgery and I have had over 70 now. It’s because it went so wrong last time, and even now I am still going through it and this op is a result of the j-pouch so I am scared. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie #fistula
Trick or treat? 🎃👻 Naturally it’s a trick and I am spending the afternoon here in theatre again having another tube manipulation as it’s been out for nearly a week after a debilitating bout of sickness. 6 days without feed. 15lbs lost. #pots #potsie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #dysautonomia #hypermobility #hiddendisability #RAS #MCAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness #edsathlete #butyoudontlooksick #jpouch #jpouchathlete #njtube #tubie #fistula