[PR] Gain and Get More Likes and Followers on Instagram.

#EDSiii

MOST RECENT

Some days are just hard. Some days my body reminds me it needs more empathy than my mind wants to give it. Some days I don’t listen to my body when it’s begging to be heard, simply because I don’t want to let people down, or maybe because I don’t want to be beaten by this. Those are the days I end up letting people down despite my best efforts. Those are the days I let myself down the most. Invisible illnesses are real, unpredictable, and fucking shit. Today’s reminded me I have to be kind to myself, and that I’m lucky to have kind people around me who don’t add to the internal guilt I feel for simply not being normal. #EDS #EDSIII #HEDS #POTS #jointhypermobilitysyndrome #hypermobility #posturalorthostatictachycardiasyndrome #chronicillness #invisibleillness #invisibledisability #edsawareness #zebra #35mm #canonae1 #lomography #lomography400

47/365 2.16.18 my birthday! This is the alert and sweet look and pose I got when I said “It’s Momma’s day!” Gotta love her. I spent the day with her, reading, finishing #strangerthings2, and watching #battleroyale (I have questions). #ellie #elliethedachshund #dachshundsofinstagram #dachshund #doubledappledachshund #birthday #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

46/365 2.15.17 Why do pugs have this default setting: I just heard astounding news? Dramatic Pug Double-Take. Today, I dog-sat Spencer and his brother, Preston, who is a long-haired dachshund, for my parents while they moved house. And apparently, according to this picture, I said something shocking. #spencer #spencerreid #drspencerreid #spencerthepug #puglife #puglifechoseme #pugstagram #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

45/365 2.14.365 Being chronically ill means tracking everything in your #planner, even on #valentinesday. But thanks to the magic of the FB Messenger camera, I was able to summon my #Patronus to make the task less onerous. He dressed up for the occasion. (Note: Not Pottermore approved Patronus.) #unicorn #unicornparty #hearts #planningparty #inkandvolt #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #valentineunicorn

So it's official. 🎉🎉🎉 After months with only a working diagnosis of EDS III, I have finally had that diagnosis confirmed and made official.

I have Ehlers Danlos Syndrome type 3.

I feel incredibly relieved that after literally years of fighting for this I have my diagnosis.
I saw my new rheumatologist today, and I was kind of worried about it, but it went fantastically well.
I wasn't told anything I didn't already know, and my treatment won't change- but, with this diagnosis many more of my symptoms are explained, which they weren't under the diagnosis of Joint Hypermobility.
My health team and other medical professionals can also make better informed decisions about Surgery as and when I need it, as well as taking more precautions with Anesthesia, as its common to react badly, or for it just to not work with patients with EDS.

It also means that it is likely that I have a member of my family who (possibly historicaly) also has it.
My bet is on my mother because she scores the same as me on the Beighton scale and anesthetic doesn't work properly; although bar that she is non symptomatic.
Both sides of my family have Hypermobility, with my paternal cousins and my biological brother being as or almost as bendy as me, just mainly non symptomatic.

My brother does get some joint pain and minor subluxations but has never sublocated or dislocated anything, he's just bendy thankfully.

I am a little sad because a part of me was really hoping it was just Hypermobility, which would mean it was much safer to have biological children. Most people with Hypermobility have zero problems like the rest of my family.
Unfortunately as it is EDS, the inheritance rate is higher, as is the possibility of them being as symptomatic as myself.

I wanted to adopt due to my health anyway but I guess it's just the final nail in that particular coffin.
.
.
#ehlersdanlossyndrome #ehlersdanlos #ehlersdanlostype3 #EDS #EDSIII #EDSstrong #spoonie #adoption #diagnosis #hospital #thankful #zoestribe

44/365 2.13.365 My desk— #microphone, pop screen, lavender #candle, #ghost mouse pad from @mochigrams, and my #Oreo USB mug warmer. My desk is the antique secretary passed down in the family; my dad used to do his homework on the desk, and it has two hidden compartments. #workarea #podcastprep #theremightbecupcakes #podcast #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #apple

42/365 2.11.18 the start of my birthday week, and today’s picture is a #painselfie —the unceasing winter rain is cranking up and aggravating individual joints on top of everyday pain, including awkward ones to heat, like my shoulders. My heated & weighted owls to the rescue, Byron and Seuss. I was going to record episode 35 of @theremightbecupcakes podcast today, but that will have to wait until tomorrow. I hate that. #theremightbecupcakes
Plus, I am having extra health problems that will hopefully be properly diagnosed with a c-t scan on Tuesday—eventful birthday week! I am what’s known as a good sport. 😎 Hey, my life is definitely interesting! #selfcare #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

I stood on one leg and did my full daily physio routine in my fabric compression hip brace, back support and knee support.

Feeling pretty darn proud of myself.

I fully dislocated my right hip on the 19th of January, I was zero weight bearing week one, doing 'chair physio'.
90% no weight bearing week 2 with 5 minute sessions of practicing standing and gentle weight bearing exercises.
And now half way into my third week I am back I to fairly intensive physio again to try to build up the muscles and stop my joints popping out and cracking like glowsticks. #glowstickintraining

Sometimes I get incredibly frustrated because it feels like I don't get anywhere, but recovering from that kind of injury takes a very long time, especially as it can be traumatic to the soft tissue around the joint. Luckily? with EDS because mine is over stretchy, while it's really easy for me to injure myself like that, it doesn't always cause the catastrophic tissue damage you would associate with a full hip dislocation in someone with normal connective tissue. Because you don't normally dislocate hips without a high impact injury such as a car crash.

I am walking again with my now excessively duck taped hip brace, (call me paranoid but...) a lot of fabric bracing on my legs and two sticks.
I can't pretend it doesn't still hurt like a b**ch but I am getting there.
.
.
#glassbodysteelsoul #fightlikeawarrior #ehlersdanlossyndrome #ehlersdanlos #EDSIII #chronicregionalpaindisorder #chronicillnesswarrior #chronicpain #chronicfatigue #spoonie #hipdislocation #hipbrace #backsupport #bodypositive #hipbracefashion #physiotherapy #proud #rehabilitation #zoestribe

37/365 2.6.18 did too much today, working on the podcast and its website. All fleeced up, my girl and I, waiting on the winter storm and resting as I am supposed to. (Yes, Ellie is wearing a pink sweatshirt—not shown—and she loves it. It’s a fight to get it off of her.) #ellie #elliethedachshund #dachshundsofinstagram #dappledachshund #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #selfie

35/365 2.4.18 snow day. ❄️ Rewatching Get Out (there’s stuff in it meant for the repeat viewer to catch! Eerie stuff!) and finally making the hat I owe @theloftusparty so he will cover his head when it’s cold. ❄️ Ellie was not intended to be in this shot, but dachshunds do as they please. #elliethedachshund #dachshundsofinstagram #petsofinstagram #snowday #knitting #knittingifts #inkandvolt #getout #getoutmovie @getoutmovie #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #knitpicks #ravelry

33/365 2.2.18 Spent my out-of-commission time today rereading Columbine on audio and listening to @lpontheleft’s multipart series on Jonestown. Splendid distraction from fatigue and pain. (Congratulations on your engagement, @drfantasty!❣️) it’s fascinating to go so deeply down the rabbit hole—and so skillfully—on milemarker crimes that I remember. #truecrime #history #jonestown #columbine #podcasts #audiobooks #amreading bookstagram #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spooniestrong #zebrastrong #apictureaday2018carla #davecullen

Most Popular Instagram Hashtags