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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

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

@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

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

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

#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

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

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

MOST RECENT

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

"Can money pay for all the days I lived awake but half-asleep?"
How strange that I feel more alive chronically ill and semi-homebound, typing my thoughts and talking into a microphone. Chronic pain woke me up, and I don't ever want to go back. (I will never not love this song.)
#primitiveradiogods #ivebeendownheartedbaby #standingbyabrokenphonebooth #withmoneyinmyhand #personaljukebox #music #showandtell #EDS #EDSiii #EDS3 #hypermobility #zebra #zebrastrong #POTS #spoonie #spooniewarrior #fibromyalgia #chronicillness #chronicpain #chronicfatigue (this song mentions zebra flesh, what an odd coincidence) #podcasters #podcasting #podcastingdork #theremightbecupcakes

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
・・・
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

Cuando escuchan galopar piensan en caballos, no en cebras...
Hay mucha ignorancia en la medicina y los perjudicados somos nosotros, los que padecemos esta enfermedad.
La gente diría que aparentemente somos normales, pero nadie sufre nuestros dolores, nadie se pone en nuestro pellejo, nadie lucha con nosotros, nadie nos ve. Por eso hay que concienciar a la gente, AYUDANOS!!! AYUDANOS A SER VISIBLES!!!
#ehlersdanlossyndrome #edsiii #eds #sindromeehlersdanlos #ehlersdanlos #enfermedadesraras #nosoyrarosoyedicionespecial #enfermedadesinvisibles #zebrawarrior #zebrastrong

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 ♥️❤️♥️❤️

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