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#edsiii

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Have you ever bought yourself a stuffed animal? I'm about to turn 37 and I just did. The Zebra is the mascot for Eihlers-Danlos Syndrome because we are the hidden disease that doctors are told not to assume we have. Most people are horses...but we are a horse of a different color.
I bought my zebra because I need a little companion for when the pain is bad and especially when I go through some of the painful procedures to help gain strength.
But she needs a good name!! Suggestions?!
#EDS #heds #ehlersdanlossyndrome #edsiii #imazebra

When your legs are driving you up the wall... #restlesslegs #hypermobilitysyndrome #EDSIII

My left shoulder was rebuilt by a Muslim Surgeon. Multiple of my broken bones have been fixed by Muslim doctors. My heart Dr. is a Muslim. My Migraine Dr. is a Muslim. The Surgeon who delivered Amélie is a Muslim.....
Hmmmmmm, at no time have any of these Dr's ever used their religion to hurt me or keep me from getting the healthcare that I need. Sadly, I can't say the same thing for the Christian Dr, who tried to talk me out of birth control when all I needed it for was my Migraines.
And while I don't know about the supposed validity of the percentages in this post, I can attest to the 100% truth in my life experiences. #mystory #reallifestory #political #lovemyDr #EDSIII #MuslimDrs

It's officially been 8 years since I was first diagnosed with EDS III. I can't say having medical conditions is fun in the slightest, especially when it brings on many more, however, I can definently say that having the actual diagnosis in writing has helped tremendously, rather then hindered what I can do😋 Bring it on #EDSIII #justneededaphotoforInsta #whatever

#nrf2 #dualsynergizer #edsIII #autoimmunedisease #cancerhelp I have Eds III, autoimmune issues and multiple health problems and I have been taking this supplements for 3 months and feel great. It helps many conditions including Lupus. Thank you Daisy Gonzalez for this life changing product. message me for her information. Benefits: Reduce oxidative stress Anti-aging and skin health Boost natural antioxidant production Repair and rejuvenate cells Protect cells from free radical damage Promote cellular repair Enhance daily performance and energy levels Boost cellular health Reverse cellular aging Improve sleep quality

#24daysofgratefullness
I am grateful for low symptom days, and even hours.
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I often try to get as much done when I feel good and then crash later. So I have to work on pacing myself even on low symptom days. Like the one I had yesterday, except today I know I am paying in spoons for yesterday's walking.
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#spoonie #selfcare #chronicillnesswarrior #glassbodysteelsoul #justkeepswimming #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #NEAD #lowsymptoms #pain #pacingmyself #zoestribe

About last night... That's 745 series baby! #CallMeElDuderino #Front9 #BEASTMODE #Bowling #EDSIII

Some times the pain requires me to stop, organize art supplies, and spend time with some Crazy Kid horror while I wait for the meds to work. #horror #horrormovies #Orphan #art #organizing #pain #chronicpain #EDSiii #hypermobility #fibro #spoonie #zebra #claradoxical #Carla

MOST RECENT

I have a lot of new followers so I thought I would do a few 'get to know Zoë' posts. This one is a medical one, the next will be non medical and the third is undecided but I will do 3!
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10 medical facts about me that you might not know from my posts:

1. I have hearing aids and can lip read. I also speak rudimentary BSL.
2. I have only been in an ambulance once despite my medical history, because my mum always drove me.
3. I have dislocated every joint from both hips to my pinky toe on both legs, at least once. Weirdly proud of that...
4. I have achieved my Bronze, Silver and Gold DofE expeditions. Although I have not yet completed all of my Gold Duke of Edinburgh award sections. I did bronze with sticks. Silver in a manual chair and gold in a manual mountain trike wheelchair. @mountaintrike
5. I was born 9-10 weeks premature.
6. I have heterochromia, meaning my right eye is half green and half blue. My left eye is blue/grey but a different blue to the other half.
7. I score a full 9 on the Beighton scale for Hypermobility.
8. I have deformity in my skeleton especially my legs so I walk like a penguin if I don't concentrate on holding them straight or wear braces.
9. I have 30+ splints and braces and will soon get more. Most are for my hands and legs.
10. I have a wheel chair called the 'blue chariot of doom' (thank you @j_mrtr for naming him in year 11) and it survived Silver DofE in the Lake District. Also it was very good as a battering ram when I was in it 24/7 to get through crowds when I was in high school. I had no shame I would just belt down the corridors and if they were in my way to class they got mowed down. Otherwise I never got through because I went to high school with some real *gems* some of who would block just to be a pain in the butt on purpose. (Image from @acutehearingsolutions.) #spoonie #bluechariot #wheelchair #10factsaboutme #highschool #hearingloss #BSL #lipreading #chronicillnesswarrior #chronicpain #genetics #HEDS #EDSIII #chronicregionalpaindisorder #ehlersdanlossyndrome #hypermobilitysyndrome #NEAD #nervedysfunction #disassociativenonepilepticattackdisorder #nonepilepticattackdisorder #seizures #positive #zoestribe

#24daysofgratefullness
Day 13.
I am grateful for having more full and long awaited Diagnoses and understanding doctors.
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I have waited since Jan 2014 for answers as to what causes my left sided weakness/paralysis episodes. Once organic (brain and spine Mri showed no damage August 2014) and psychological causes were ruled out when they first started, I was left to just carry on and hope that physio therapy would help. Which it does. We don't know what has caused my nerve dysfunction, but finally finding a doctor who will listen after nearly 4 years! This means so much and I am so grateful.
I was grateful that it was not a stroke/ bleed on the brain causing them, but being left undiagnosed and with no answer was very difficult. I still don't know if a cause will ever BE found. But having a diagnosis and a doctor who will A. Actually diagnose it as nerve dysfunction, and B. Will admit that we might not ever get the full story is just fantastic.
Honesty and admitting when they don't know the answer are sometimes some of the best traits a doctor (or any health professional) can have. .
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I am also grateful for the Disassociative N.E.A.D diagnosis, but we sort of expected that to be a bit easier to get having already received a working or partial diagnosis.
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#spoonie #honesty #grateful #24daysofgratefullness #nervedysfunction #newdoctors #newdiagnosis #diagnosis #relief #DNEAD #NEAD #disassociativenonepilepticattackdisorder #nonepilepticattackdisorder #chronicpain #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #justkeepswimming #2014 #2017 #zoestribe

I edited my Hamlet face mask by @cambridgemask by replacing the ear loops with elastic so that the mask fits better as with hearing aids and glasses it wasn't sitting well on my face at all. 😷
Now it is very early to breathe through, comfortable and mask wearing in general seems to have helped somewhat with the allergic reactions I have been having.
This one is much cooler and fits better than the white medical/dust masks I was using previously, and this is washable and can be used till 2022, which costs up as less than the amount of money I would have to spend on disposables that are less comfortable and stylish.
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I have never really been someone with bad allergies before, the last few years I have developed some such as rashes when my skin touches grass that never really bothered me before but is now in the summer a big pain in the butt.
I have a blood test allergy test booked for Tuesday and should get the results fairly soon after that. Then I will probably have to have the patch test done by an allergist. Until then I have to wear a mask outside, and by tomorrow I will have ended the course of 1 week, 1 a day antihistamines I was given, and then I have to observe if my allergies are better/the same/ worse without taking it, and if being in the country side (we live next to fields) and air quality has any effect. So far I haven't noticed much of a difference but as nobody here smokes my eyes feel a lot less like sandpaper this morning. Skin is still itching and once the cat moves from my lap I am going to check my ankle where it has been wrapped with kinesiology tape as it is itchy and I think I might have reacted with the adhesive again. But it did take a good 24 hours to bring up itching.
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Update.
Cat left. There is some redness and rash but not that bad.
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#spoonie #allergicreaction #facemask #cambridgemask
#😷 #allergic #allergies #Rash #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #chronicillnesswarrior #chronicpain #genetics #DNEAD #disassociativenonepilepticattackdisorder #NEAD #nonepilepticattackdisorder #seizures #positive #nervedysfunction #newdoctors #newdiagnosis #diagnosis #relief #zoestribe

Well the tomorrow I have been worrying about is now today.
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Back to Norfolk for my Neurologist appointment. Not met this Dr before so am feeling a tad trepidatious. New doctors certainly make my nervous. Especially Neurologist as the entire thing with the seizures scares me, and that fear also encompasses the health care around them. Or lack of.
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This is the first time in a long time we have had to go private, but my Mum has medical insurance through her work. So unlike a lot of people in the same situation in Britain we are privileged to have that option. I am paying the up front costs if/until I can't cover them with my savings. So we will get answers. I just hope it doesn't take too long. Although if you pay it tends to be faster I guess.
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I feel sick. Tired. Back hurts and my whole body aches. Yesterday was worth it though. I am just very tired.
Something isn't right with my ankle. I can't move it now without excruciating pain so I think that last night I did it in worse than I had thought, because something in the joint is not right and I have been walking around on it yesterday evening. I thought I had just slipped it, or subluxed it at worse. But now I think in my sleep it has moved to a partial dislocation because my toes aren't moving properly and it woke my up at 5 am.
Not sure how much of feeling sick is because I pushed too hard last night and ate more food than I have the past few days. So far no puking! Small. Achievements!
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I am going to risk taping my ankle and hope to God I don't react to this tape too. If I get hives and blisters on my ankle I think I will just resort to sulking. Or I would. If I was any good at it.
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#Neurology #seizures #functionalseizures #possibleNEAD #nonepilepticattackdisorder?
#spoonie #sublocatedankle #sublocation #ouch #ehlersdanlossyndrome #severehypermobilitysyndrome #chronicillnesswarrior #chronicpain #genetics #HEDS #EDSIII #chronicregionalpaindisorder #NEAD #zoestribe

I love this dress so much.
10/10 overdid it today but it was so worth it. My back kills but who cares 💁🏻I have had such a fun day! And too much sugar. But who can resist a candy cane. Not me anyway!
The meetings and Dr appointment less fun but definitely constructive! Getting allergy testing on Tuesday (bloods) then depends on what they find but I will probably end up at an allergist. Have to wear a mask outside in the meantime as smoke seems to set it off and boy oh boy to students smoke around here. Ho hum.
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All tests are good test even when the process sucks I guess! Tests mean progress. Even if progress is being given jabbed with a needle repeatedly 🙄
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#spoonie #selfcare #chronicillnesswarrior #glassbodysteelsoul #justkeepswimming #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #NEAD #zoestribe
#JOOTCxmas

#24daysofgratefullness
I am grateful for low symptom days, and even hours.
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I often try to get as much done when I feel good and then crash later. So I have to work on pacing myself even on low symptom days. Like the one I had yesterday, except today I know I am paying in spoons for yesterday's walking.
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#spoonie #selfcare #chronicillnesswarrior #glassbodysteelsoul #justkeepswimming #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #NEAD #lowsymptoms #pain #pacingmyself #zoestribe

Why we EDSers call ourselves Zebras in case you were wondering.
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Zebra is medical slang for arriving at a less usual diagnosis when a more commonplace explanation is initially considered more likely. It is shorthand for the phrase coined in the late 1940s by Dr.Woodward who instructed his medical students
"When you hear hoofbeats, think of horses not zebras". Since horses are common in Maryland while zebras are relatively rare, logically one could confidently guess that an animal making hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.
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#zebraclub #zebrastrong #spoonie #ehlersdanlossyndrome #HEDS #EDSIII #ehlersdanlossyndromeawareness #hypermobilitysyndrome #chronicillnesswarrior #ChronicPain #genetics #zebra #zoestribe

This mug made me laugh, I hope it makes you guys smile. A little dark humor is never a bad thing, and as a bit of a tea snob I just saw this mug and was all 'ooohhh cute' and then had a giggle to myself.
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Post seen on @chronically_lilyeleanor page
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#ehlersdanlossyndrome #ehlersdanlos #HEDS #EDSIII #chronicregionalpaindisorder #chronicillnesswarrior #chronicpain #genetics #funny #spooniehumor #spoonie #Mug #zoestribe

Zebra socks for a little motivation today. Got through the group presentation I had to do as part of our end of semester assessments, but did bail on watching other peoples as my stomach is sore and I wanted to just go back to my flat and try and eat breakfast as I didn't manage that this morning. I know it is 11.30am so maybe more brunch?

#spoonie #spoonieclub #selfcare #chronicpain #severehypermobilitysyndrome #tired #brunch #HEDS #EDSIII #chronicregionalpaindisorder #ehlersdanlossyndrome #zoestribe

Within safe and normal range once again. I definitely think stress had a lot to do with it, and not eating/ drinking enough and pushing my body too far. So far with my heart rate down I haven't had a seizure since last Friday and that was only a little one. So I am hoping I can do a seizure free week for the sake of my joints who seriously want a break!

Seeing the NHS physio therapist tomorrow for a *double* assessment 😱
They normally last 45 minutes but I have two so 90 minutes of probably showing them how I walk, move, joint stability etc. I am tired just thinking about it but it is a big step forward NHS Health care wise.
I am going to need all the spoons you guys can send! 🥄🥄🥄 Hoping physio are as nice as the occupational therapist were last week 😀

#spoonie #spoonieclub #selfcare #dislocations #zoestribe #chronicillnesswarrior #glassbodysteelsoul #chronicfatigue #physio #physiotherapy #fightlikeawarrior #chronicpain #hypermobilitysyndrome #HEDS #EDSIII #zoestribe

Well right now my injuries are pretty viable with R2d2 but this message still holds. If I took of the tape, splints and plasters, got out of my brace and left the wheelchair behind then you wouldn't see my disability unless you looked closely.
#invisibleillnessawareness #invisableillness #EDSIII #ehlersdanlossyndrome #hypermobilitysyndrome #chronicillnesswarrior #fightlikeawarrior #zoestribe

#31dayspooniechallenge
Day 4, when were you diagnosed?

I don't have a single diagnosis date, and I'm not about to go through my entire medical history to find out as I would be reading for months. But I would put a start date on my real cycle of diagnosis starting around 2012; whenI was originally diagnosed with a working/possible diagnosis of juvenile arthritis causing my joint pain. When that was ruled out by various tests for viruses, ultrasounds on my joints etc... I got the diagnosis of just Hypermobility, and then later Severe Joint Hypermobility Syndrome which recognises that it has more implications on my health than just being "a bit bendy".
I still have some conditions/symptoms that are as of yet undiagnosed/no cause has been found.
I am also diagnosed with Chronic Regional Pain disorder, as although Hypermobility/ HEDS/EDS III can cause pain in the joints, I have pain litteraly everywhere, I am also diagnosed with Chronic fatigue, Dyslexia and Dyspraxia (why I wear green glasses sometimes as they help with visual stress, and stop my eyes getting strained.) Hearing loss (I am partially deaf (not that bad really) but I do have to wear two hearing aids 24/7).
I have skeletal deformity due to the Hypermobility, and my joints not being held in place as I grew, some sockets are just bent, other sockets surround him as my left jaw socket are too large for the joint ball.
I also have some nerve damage but nobody is quite sure where/ exactly why, I am intolerant to a lot of food and allergic to a few things such as certain plasters and soaps, and I have functional seizures.
I have bilateral muscle weakness on my left side which has can cause issues with swallowing and decreased feeling on my left side due to "episodical left side weakness" (looks like a stroke but no organic/ neurological cause has been found as to why this happens) .
I am also pushing for genetic testing (now just waiting for the referral letter to come) to make sure the type of Ehlers Danlos syndrome I am diagnosed with is correct (EDS type III).
We are having to go private to find out what is causing the functional seizures. I am conscious but have no control.
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Continued in comments:

After 29 episodes, a formal introduction is due. Guys, this is Ellie, the #podcast mascot/personal assistant and my nurse (she monitors my health, and tells me when I am pushing too hard and need to rest #spooniefamily). She’s a rescue #doubledapple #shorthair #dachshund. I guesstimate she is about seven years old. She likes to bask in the sun, run in my parents’ back yard, hunt lizards, and sit as close to me as possible no matter what I am doing. If I am editing the podcast, and leave my office chair, I am apt to return to find her in it—I have yet to figure out how she manages to get into a chair that spins! She is not a trained #POTS service dog, but I swear she’s self-taught. Ellie, meet the guys. They are my awesome audience, the people I am telling stories to every week, and they make me very happy and grateful. See, I knew y’all would hit it off❣️🐶🎧 #podcast #podcasts #podcasting #podcastingdork #beyourownheroine #carla #theremightbecupcakes #podernlove #podernfamily #ladypodsquad #dachshunds #dachshies #adoptdontshop #dappledachshund #Elliethedachshund #podcastmascot #EDS #EDSiii #hypermobility #spoonie #zebra #zebrastrong #zebrapodcaster #spooniepodcaster #spooniestrong

Yeap dis is me!

Made me laugh though!

I mean there are memes for everything but it never quite occurred to me that there were EDS memes 😂
Also @charlotte.gripton there is a cat in it. You know. In case there wasn't enough cats on Instagram 🐈🐈🐈 #meme #spooniehumor #ehlersdanlossyndrome #EDSIII #EDSmemes #catstagram #zoestribe

I legit have a little book listing symptoms from every day and what meds I am on/supports used. And ankther more general one that only tracks fits and episodes... Most boring novel ever... 🙃😂😷 #spooniehumor #spoonielife #chronicillness #chronicpain #chronicfatigue #severehypermobilitysyndrome #EDSIII ?#NEAD?

Hey!
My exo-skeleton arrived a month before it was supposed to. Got the text to say it had been delivered so went to post room. Was not there so they think it is in the post van for the uni and will be able to be collected by 3 when the uni post van delivers the second round of Parcels.

I will get a call to either go get it or they will bring it up to me because they are all angels in the post/accommodation office!

I will have to learn to walk again with this and apparently it *will* hurt, but it should help straighten my legs or at least stop them from bowing more and help me walk!

Changing to a bluer theme instead of my yellow centre posts, as the yellow felt a tad to aggressively bright, and it stood out almost too much. I love yellow, but I also love blue and wear blue a wear blue a lot so I thought this would be a bit more calming and not clash so much.
Also channelling Dory with her #justkeepswimming with the blue.

My #boringspoonieachievements will still be the same yellow format though.
Trying for some vague form of Instagram aesthetic but I am too random and too colourful for that to work well, so I like having the little lines of cohesive colour. And they make the page more personal without having to put my face everywhere or only use 1 filter as I don't like a lot of the insta filters all that much.
#spoonielife #unexpectedpost #surprised #happy #hopeful #letsgetzoewalking #rollon3pm #omg #exoskeleton #chronicillness #severehypermobilitysyndrome #EDSIII #walking #letsgetzoewalking #blue #Dory #zoestribe

@chronically.janni has some amazing things to say about life with #EDS and how it can alter your life over time.
It is a crazy ride but I have found amazing people who also share parts of the same story.
I have Severe Joint Hypermobility syndrome, otherwise known as Ehlers Danlos type III, although hopefully soon I will get genetic testing to find out more accurately what diagnosis of EDS I have, and the inheritability statistics, future impact on my life etc... If you like Janni you might also like:

@jessicaoutofthecloset
@spoonie_from_serbia
@spooniehealthhub @zebrasnap @ehlers.danlos @ellie._.logan @hypermobility_syndrome
@aaronwheelz
@izzywheels
#chronicillness #chronicpain #chronicfatigue #Hypermobility #ehlersdanlossyndrome #EDSIII #jointhypermobilitysyndrome #justkeepswimming #glassbodysteelsoul #disabledfashion #zoestribe

When your legs are driving you up the wall... #restlesslegs #hypermobilitysyndrome #EDSIII

Have wheelchair and minimal #spoons, will write while husband works. Thank you, @starbucks, for the spiffy #accessible table. It’s quite comfortable. It is so nice to get out of the house briefly. #coffee #amwriting #halloween #cursiveismagic #carlahufstedler #carla #podcasters #handwriting #writing #psl #linkinpark @codeandquill #EDS #EDSiii #hypermobilitysyndrome #EDS3 #POTS #fibromyalgia ♿️ #spoonielife #zebralife #zebra #spoonie

#protandim #nrf1 #nrf2 #hurricaneirma #stressed #IBS #edsiii #anxiety #relief #mitochondria #cellrepair sick2fit.lifevantage.com
I increase my dose for the storm to help with added stress and anxiety. This amazing product is mine for life. Message me for more information.

#nrf2 #dualsynergizer #edsIII #autoimmunedisease #cancerhelp I have Eds III, autoimmune issues and multiple health problems and I have been taking this supplements for 3 months and feel great. It helps many conditions including Lupus. Thank you Daisy Gonzalez for this life changing product. message me for her information. Benefits: Reduce oxidative stress Anti-aging and skin health Boost natural antioxidant production Repair and rejuvenate cells Protect cells from free radical damage Promote cellular repair Enhance daily performance and energy levels Boost cellular health Reverse cellular aging Improve sleep quality

"Fire Coral"
Cast details and price coming tomorrow. >4lbs is all I know right now.
"Fire Coral" was cast in Willis, Texas, immediately after I returned from diving in Key Largo to "Jesus of the abyss". (He is covered in fire coral). To get all the light dirt out of this one, I set it on fire 3 times. There is black char resin in random places that give it a very unique difference from all my others so far.
#art #aluminum #aluminumart #aluminumcast #aluminumcasting #metal #metalart #metalcast #metalcasting #ants #anthill #anthills #anthillart #anthillartwork #casting #eds #ehlersdanlossyndrome #hypermobility #edsIII #eds3 #livetheexample #ColonyCastings #renisancefestival #renfest #coral #firecoral

Photo shoot pix soon to come. I found a Carpenter Ant phenomenon on a neighbor's property. A 20' circle of mounds and soft ground that has been growing for 10+ years. If it was my property I would pour it with cement and open a museum...its that big! I poured around 50lbs of aluminum and this is me getting it out! #ColonyCastings #art #aluminum #aluminumart #aluminumcast #aluminumcasting #metal #metalart #metalcast #metalcasting #ants🐜 #anthill #anthills #anthillart #anthillartwork #casting #renissancefestival #renfest #livetheexample #ehlersdanlossyndrome #eds #EDSIII

This here is a MAJOR reason I'm raising awareness. To just see how little is understood about the #hypermobile type known as #EDS3 or #EDSIII after all these years is just disgusting!

#Repost @ehlers.danlos
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This May, we are raising funds for an international registry to help us find the gene for hypermobile, among other goals. More information on the registry can be found here: http://bit.ly/2r7QMUx
Check out ehlers-danlos.com for more information.
Please share our daily facts with your networks for Ehlers-Danlos Awareness!
#DazzleTogether #EhlersDanlosSyndromes #EhlersDanlosAwareness #EhlersDanlos #TheEhlersDanlosSyndromes #ZebraStrong #EDS

#MarciaBrock

I have some exciting news! I am working on a project for my masters degree to collect EDS data and then use it to eventually find the gene for hEDS. I am so so excited to be part of this. But I need YOUR help. Within the next month a website goes live and when it does I need all your bendy zebras to join it and put your data in! If you would like to be involved please comment or send me a DM. Once you have put the data in I just need your patient identifier. In the future that want more doctors and clinic people to then be able to access the data. This gives a way for YOU to update medical records in advance of a clinic visit and after if you suddenly remember something. All those symptoms we juggle. In one place, you just give them the identifier. To researchers it is completely anonymous so I will appreciate your secret contribution. At the end of it if anyone wants to see my data I would be more than happy to share when done in the summer
Photo from the Internet
#eds #ehlersdanlossyndrome #ehlersdanlos #heds #hypermobility #spooniestrong #spoonielife #bendy #zebra #bendybitch #masters #MSc #project #thankyou #help #mayisedsawarenessmonth #hsd #eds3 #edsiii #edstype3 #hypermobilitysyndrome #joints #joint #pain #painful #subluxation #dislocated #excited #gene #genetics

Yesterday's pilgrimage was successful! I feel validated and much safer. Yes, on top of #hEDS (#hypermobility #ehlersdanlossyndrome) and #fibromyalgia, I have #POTS. My new specialist is a superhero--seriously, if you need help and can travel to #Richmond, #Virginia, hit up Dr. Sica at #VCU. He has several patients that are managing some form of EDS with some form of #dysautonomia.❣️ I have to take my blood pressure standing and sitting for a week and send it to him; that determines the course of medication we choose. The list on the right is a list of POTS symptoms culled for three different places. It represents for me either symptoms that have never been addressed, or symptoms that have not yet been fully addressed by current treatment. Every single one. Thank you, Dr. Sica, let's do this! #EDS #EDSiii #zebrastrength #zebra #spoonie #spoonielife #carla #carlaclaradox #bujo #bulletjournal #commonplacebook #listmaking ♥️❤️♥️❤️

Poe-ka Dot socks from @outofprint and #Ravenclaw hat for luck, purse over-packed just in case, paperwork and cardiac data on disc readied...#AnneSexton my buddy for distraction...finally heading to the hospital for the #POTS/#dysautonomia testing. Proper diagnosis and treatment could really improve my quality of life! Send me good vibes. #carlahufstedler #beyourownheroine #EDS #EDSiii #hypermobility #POTS #fibro #fibromyalgia #zebra #zebrastrength #spoonie #zebraroadtrip #spoonieroadtrip #spooniediagnosis #diagnosis #carla #happysocks #edgarallanpoe #poe #horror 💜

About last night... That's 745 series baby! #CallMeElDuderino #Front9 #BEASTMODE #Bowling #EDSIII

This is my favourite bath bomb ever. Dealing with chronic pain is tough when balancing work/home/band/relationships and more. Money is tight and so are my muscles but @lush bath bombs are becoming a necessary weekly ritual. I wish they sold these year round because I feel like a glittery silky goddess every time I use one of these. PSA: get one before they're gone. Also, I'm accepting donations towards my bath bomb obsession. #lush #lushbathbomb #goldeneggbathbomb #sparkle #eds #edsiii #chronicpain

Day 1 post op... I'll be honest, it has been a rough day. Thankfully the nausea passed during the night, but today the pain definitely was kicked up a notch. Especially when trying to get move about the house. It's a much different, hard deep pain, which has been very hard to handle. I have yet to see what my knee looks like, so I'm very interested in being able to change the dressing tomorrow and get my first look at it. Today I could definitely feel where each incision is though! Also found out I'll be starting physical therapy next Wednesday, and going twice a week for the next 3 weeks. PT after this surgery is vital in every case, but with EDS it's extremely important that I'm very diligent with it. I'm at a higher risk of retearing and I am bound and determined that that will not happen! I'm going to make sure that I work my hardest through this healing process even though I know it's not going to be easy. He's to healing!! 💪😉😊😝

What a day it has been. Surgery went well, had a bit of a rough time in recovery though. I had a full ACL reconstruction using an allograft, the fraying of my lateral meniscus trimmed, and also some cartilage trimmed. I'm definitely worn out, but I'm hanging in best I can. This ice machine is definitely a huge help. Right now I'm focusing on trying to manage the pain and desperately trying to get over the nauseousness that has been taking over all day. For more I'm going to see if I can have a little soup, get this headache to die down, and get some rest.

Well after 3 long months, my ACL reconstruction surgery is bright and early tomorrow morning. Crazy how the last month has just flown by. I'll be completely honest, I've truly felt pretty low and defeated several times the last few months due to more than one reason. But I'm doing my best to remind myself this isn't where my story ends. It's just not. I've got fight left, I've got a future to work for. This is one step towards getting my body, while still learning more about what my body is and is not capable of with EDS. So, send your positive thoughts my way tomorrow, let's get this ball rolling. Because baby, I've got things to do!

Derpy photo I know but I'm just going to my echocardiogram appointment! I hope all goes well but seeing as I have a heart murmur, it's best they check it out. Heart murmurs seem to be very common in people with EDS.
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#goth #gothic #motd #otd #vintageinspired #1920s #eds #edsIII #disabled #spoonie

I have been fighting some kind of virus, which means all my #EDS inflammation symptoms are through the roof. (Immune Overreaction ain't just a great indie band.) #Arlo has never been a huge cuddler--he had a bad childhood before we adopted him, so he expresses affection by sitting near loved ones. But when I am in the middle of a big #flareup, Arlo overcomes any fears and snuggles me. 🐾 Right now he is sleeping with his head in my lap. Took this one right before he dozed off. #Arlothepit #pitbullmix #pets #family #love#safety #EDSiii #EDS3 #hypermobility #fibro #fibromyalgia #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlostype3 #adoptdontshop #chronicallyill #spoonie #zebra #rescuedogsofinstagram ❤🐾❣️

Christmasing at Mom and Dad's. I am resting and enjoying the ambiance #EDSprerogative while the family watches football, bakes #Christmas goodies, and wraps presents. #christmas2016 #chronicchristmas #EDSiii #carla #holidays #2016 #christmastreelights #christmastree

Took a little window of no vertigo and low pain to hang some of the ornaments I made last year. As you can see, Elf 💚is well represented. #paper #papercraft #ornaments #christmas #christmasornaments #elf #movies #music #christmas2016 #christmasmovies #stars #claradoxical #carla #christmas #christmastree #chronicchristmas #pots #edsiii #zebra #spooniestrong

I have been enduring a bad flare up for several days now, that awful feeling of my body just breaking down. #Arlothepitbull knows that he is too heavy, that being on me or against me will hurt. #Arlo also shows worry about my inflammation by staring at me. Hard core staring. This is his head propped at the end of my recliner.
Sometimes a #spoonie + #zebra needs a good stare. #illness #chronicillness #EDSiii #EDS #fibro #fibromyalgia #pain #chronicpain #chronicpainwarrior #pets #dogs #family #love #pitbullsofinstagram #pitbulls

As a hypermobile #zebra, I really can't do my nails: As a zebra with skin fragility, I should not do my nails. Mom to the rescue--manipedi. I chose an autumnal color--dark purple-brown-burgundy fall love fest. Encouraging low temperatures with my fingers and toes.
Polish is Opi's "Lincoln Park After Dark". #manipedi #manicure #autumn #autumn2016 #carla #carlaclaradox #ifeelpretty 💅🏼 #bujo #lists #handwriting #cursive #EDS #fibromyalgia #EDSiii #chronicallyme #OPI

It's officially been 8 years since I was first diagnosed with EDS III. I can't say having medical conditions is fun in the slightest, especially when it brings on many more, however, I can definently say that having the actual diagnosis in writing has helped tremendously, rather then hindered what I can do😋 Bring it on #EDSIII #justneededaphotoforInsta #whatever

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