#edsiii

MOST RECENT

143/365 5.23.18 Regular, daily EDS, POTS & fibro symptoms plus a cold (or whatever this is) equals all symptoms go to eleven. Immune fragility ain’t as sexy as it looks, y’all. So that means my CPAP, my trusty dachshund, and I are snuggling with an audiobook. This time: Ready Player Go, by #ernestcline narrated by #wilweaton#audiobooks are a must-have for the chronically ill. Thanks for the companionship and distraction from the pain, @itswilwheaton & @audible_com. #bookstagram #amreading #readyplayerone #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #audible

134/365 5.13.18 watched movies with Mom for #mothersday — her first request was Get Out. I call this special little snap “Spencer the pug didn’t see the end of Get Out coming.” 😃 Best shocked dog face ever. Oh—and Mom loved the movie. #horror #getout #horrormovieface #horrormoviereaction #puglife #puglifechoseme #flatnosesociety #spencerreid #spencerthepug #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #apictureaday2018carla

So I found this gem the other day and wanted to use it for flashback Friday since it’s EDS awareness month...but totally forgot so here we are. I think I was about 8/9 years old in this photo. Talk about an EDS kid lol. I’ve always struggled with severe stomach issues and when I was young keeping food in was a constant battle, I was soooo incredibly flexible (look at my one foot, now my bad foot) and had super stretchy skin. Anyway fast forward 25 years and I think about how rough it was. With my stomach issues I missed out on a lot of fun things others could do while I was glued to a bathroom all day, None of my friends parents wanted to take me fun places because they knew me as the kid that always “got hurt” or called “the clumsy one”. Even as a kid I was always abnormally tired and had a ton of “growing pain” it was lonely and felt like nobody believed me. They thought I was making it up to get out of school or out of eating dinner 😔I never considered myself a “nerd” and had the most amazing friends but was definitely bullied quite a bit due to the way I looked. I would always get called “chicken legs, mosquito bites, storky dorky and kids would tease that my chest was as flat as my back” until high school. Kids can be so mean and I think it’s so important to teach our kids not to judge people on their looks. I ALWAYS tell my girls to NEVER EVER make fun of anybody because you have no idea what that person might be struggling with. I think it’s so important to instill the importance of kindness early on, and pray my children are actually taking to heart what is trying to teach them. #ehlersdanlossyndrome #flashback #edsiii #hyperthyroidism #hypermobility #eds #edsawarenessmonth #maybaby #solongago #bekindalways #treatothershowyouwanttobetreated

May is not only my birth month, Mother’s Day and (hopefully) the real start of spring here in upstate NY but it’s also another special month for me #ehlersdanlossyndromeawareness month. Life has been a battle since I can remember, constant injuries, joint dislocations, extreme fatigue, tachycardia, debilitating stomach issues, trouble with my heart and autonomic nervous system, poor wound healing and that’s just to name a few...but I’ve recently been so blessed to stumble upon this community with people who are dealing with many of the same issues and truly understand what I and many others are going through. I was one of the lucky ones who got my diagnosis early in life (mid 20’s) which has been a huge blessing in getting adequate treatments and great doctors but so many are not as lucky. They wait years and years to struggle to find a diagnosis, being tossed from dr to dr to be told you have this or that but never putting the pieces of the puzzle together. May is an incredible month in my eyes but most of all because it’s #ehlersdanlosawarenessmonth and I hope this post helps spread some awareness to those people still struggling to get their diagnosis or those who are feeling discouraged and alone. #edsiii #youarenotalone #ehlersdanlossyndrome #hypermobility #awarnessmonth #maybaby #compasion #chronicillness #repost @thepainparadox thanks for sharing and spreading awareness about a condition that’s not very well know but effects so many 🌈❤️🦓 #zebrastrong #potsie #spoonielife

111/365 4.21.18 My @warbyparker try-on box came today—fun! Thoughts on my #warbyhometryon 👓? 1. Louise in Elderflower Crystal 2. Mitchell in Earl Grey 3. Eaton in Tree Swallow Fade 4. Barnett in Toffee Fade 5. Hallie in Lapis Crystal #bifocals #glassesaresexy At-home shopping is excellent for the chronically ill—bring the yummy choices to me. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

109/365 4.19.18 So this happened: I scared myself and everyone else with #stroke symptoms. After a CAT scan, chest x-ray, closed MRI (horrifying) and EKG, I was finally cleared and referred to a neurologist. Spookiest experience to feel numbness on one side of my body. Looks like it might be a complex migraine situation that shows up with autoimmune disorders. Take care of yourself, y’all, and know the signs of stroke in women. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

This was the sweetest surprise waiting for me when I got home from the dr today 💛💐 totally brightened my dreary day! I am so grateful to have so many amazing, caring and super supportive family and friends that have shown me so much love while I’ve been going through a difficult time. Thank you so much Aunt Bette and Meg 😘 these flowers brought me so much joy today and I can’t begin to tell you how bad I needed a GOOD surprise like this today. Love you both!
#hyperthyroidism #autoimmunedisease #endocrinology #ehlerdanlossyndrome #edsiii #flowerstagram #floralarrangement #redroseflorist #springflowers #neededthesetoday 💐❤️

105/365 4.15.18 just finished the 37th book of the year, and this one upset my apple cart! I actually have been a nanny, not this kind of nanny, mind you! But I was disturbed to find myself empathizing with the monotony, the blurred and uncomfortably changing boundaries, the politics with the parents...and this empathy made the novel’s claustrophobia that much creepier for me. This novel is the perfect illustration of how someone can get lost in their head so easily and convince themselves of nearly anything. #horrorbooks #horrorstories #horror #bookstagram #booksread #booksreadin2018 #amreading #leilaslimani #theperfectnanny #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

Do you have #ehlersdanlossyndrome? Wanna meet like 100 other #edszebras IRL? Come to sunny #SoCal May 20 for the 2nd Annual #edsawareness #party!
See you there! DM for Q's!
🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓
#ehlersdanlos #ehlersdanloswarrior
#eds #edsIII #hypermobileeds #hypermobileehlersdanlossyndrome #edszebra #losangeles #california #chronicillness #chronicallyill #chronicpain #support #🦓

Hayuukk edisi III sdh kelar (walaupun telat) hehehe
pesan sekarang via kontak yg tertera di gambar.

#ngemperdotcom #LiteraturLiberte #KolektivKerja #EpaperNgemper #EdsIII

103/365 4.13.18 I have had a difficult week (first full #EDSiii joint dislocation and recovery) but a lucky #fridaythe13th — because I received a #goodreadsgiveaway ❣️ An advance copy of the new #horror #shortstory collection from #joelansdale and @kaseylansdale — that helped a lot to ease the pain! So looking forward to reading it. Thank you, @goodreads! #danaroberts #kaseylansdale #amreading #bookstagram #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

So it’s been a challenging few months but I’ve tried to remain positive and keep as much to myself while struggling to get through even normal day to day tasks. A few weeks ago my body said “ENOUGH” I’ve been so sick on and off and on top of having EDS I also struggle with a heart condition. I’ve been non stop sick pretty much since Christmas but have somehow managed to fight through until this past month. Well this time I knew it was more. I haven’t been on instagram like I normally am because I’ve been struggling to just get through each day and the moments I have felt ok I’ve had the blessing of sharing those times with family through our Easter holidays but those days wipe me out and I’ve done a tremendous amount of sleeping which has left little time for social media. This past week I was diagnosed (on top of my huge list of other disorders/conditions) with hyperthyroidism. I am lucky enough to have a wonderful dr office/friend that was able to get me in ASAP to the endocrinologist and hopefully we can get to the bottom of all of this so I can be on the road to recovery. I am not sure how long it’s been undiagnosed but again I’ve been feeling awful for months and am excited to get some answers next Monday. I still have to wait to see the cardiologist because of all the involvement with my heart but at least I’m getting somewhere with the thyroid. I have soooo many sweet pictures to share of the girls and my amazing family and I promise as soon as I feel well enough to go through and edit them I will post ❤️ #beenaroughmonth #hyperthyroidism #ehlersdanlossyndrome #edsiii #healthishappiness #healthissues #keepapositivemind #sayaprayer #lovemyfamily #supportsystem

EDS may be a big part of my journey but it isn’t everything ❤️ I’m starting to see how this illness is a vehicle for me to look inwards, to become a better person and to live a more fulfilled life.
I’m not grateful for the pain I experience but I’m definitely grateful for the lessons and blessings that have come along with being made out of faulty collagen. I don’t say thank you for the pain I deal with but I say thank you for the compassion I have towards others, because this pain allows me to very easily and deeply understand their pain.
The more I accept this illness and the body that I’m in, the more I realise that I am more. That I am whole despite the brokenness that often accompanies an illness.
I’d like to believe that as I continue to do the work I need to do for my own healing, I am more equipped to offer the same to the world. One thing is for sure, I’m learning to own this illness but I’ll never let the illness own me.
Love to all
#notetoself #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #EDSIII #pain #acceptance #suffering #love #mind #body #journalling #reminder #chronic #illness #spoonie

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