#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

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

proper strawberry shake... mmm im happy i tolerate strawberries after years of not touching them due to histamine levels... o body, please get back to working so i can eat real food and not this liquid diet bullshit... at least i can mask the formula shit in these well! woot ugh, gotta figure how to add another powder suppliment to my diet without the adverse side effects. need to set up shit with the Mayo clinic in rochester Minnesota asap too. my dysautonomia bullshit is definitely worse off this year than the past decade really... still a reactive mess but gettin there. hopefully once the immune system shit is sorted my mast cells will calm some. had to recertify for disability too. that's some depressing shit to go through. like, yes i know im bad but to see it all written out is another beast in itself. i dont feel broken some days but i know i am. isolation with illness is a killer. please check in on your loved ones that don't make it out often. even a simple conversation can brighten their day! especially when they don't socialize much, and not by choice

#strawberrymilkshake #elecareinfantformulaforaddednutrients #hempseed #goldenflaxseed #dysautonomia #pots #ncs #reflexsyncope #eds #edsiii #eattolive #liquiddiet #immazombie #invisibleillness #chronicillnesswarrior

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

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

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

MOST RECENT

"A.H. Interprise" is my first proof that ants are aliens from another planet that arrive in spaceships😂. Cast from fire ants in Humble, Texas, the A.H. Interprise is a free standing cast at 2.88lbs, 8.5" tall, 7" deep, and 16.5" wide. Avalible for sale tomorrow for $50. #art #aluminum #ants #anthills #anthillartwork #anthill #anthillart #aluminum #aluminumart #aluminumcast #aluminumcasting #metal #metalart #metalcast #metalcasting #cast #casting #edsIII #ehlersdanlossyndrome #eds #hypermobility #livetheexample #ColonyCastings #trek #startrek #spaceship #renissancefestival #renfest

"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

proper strawberry shake... mmm im happy i tolerate strawberries after years of not touching them due to histamine levels... o body, please get back to working so i can eat real food and not this liquid diet bullshit... at least i can mask the formula shit in these well! woot ugh, gotta figure how to add another powder suppliment to my diet without the adverse side effects. need to set up shit with the Mayo clinic in rochester Minnesota asap too. my dysautonomia bullshit is definitely worse off this year than the past decade really... still a reactive mess but gettin there. hopefully once the immune system shit is sorted my mast cells will calm some. had to recertify for disability too. that's some depressing shit to go through. like, yes i know im bad but to see it all written out is another beast in itself. i dont feel broken some days but i know i am. isolation with illness is a killer. please check in on your loved ones that don't make it out often. even a simple conversation can brighten their day! especially when they don't socialize much, and not by choice

#strawberrymilkshake #elecareinfantformulaforaddednutrients #hempseed #goldenflaxseed #dysautonomia #pots #ncs #reflexsyncope #eds #edsiii #eattolive #liquiddiet #immazombie #invisibleillness #chronicillnesswarrior

"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

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

Post op day 8 update!! Today was quite a challenging adventure! Started with FINALLY feeling more human and getting a nearly normal shower. It was a bit more difficult that I anticipated, but the pain was oh so worth it. Then it was off to my first physical therapy appt. Which I'll be honest, I have been slightly nervous about it. With only 8 days into my recovery, there's not a whole lot of intense exercises I'm doing yet. My focus is first on keeping my quad engaged and contracting. It's very important I keep that strengthening that muscle. The doctor says it's common for people to have problems with it but that I'm doing very well. She was impressed with how well it's already engaging and happy with my progress there. I also need to focus on the extension of my knee, without hyperextending which is natural for me with the EDS and being hypermobile. As well as range of motion with bending my knee. The goal at 2 weeks post op is to be able to bend to 90 degrees, and if I push I'm able to get to almost 45 degrees as of today. So I'm on track with hopefully being to 90 by next Tuesday at 2 weeks! I'm also adding in straight leg raises, although at the moment doing them standing is easier than laying down because it's less pressure but still will engage my muscles until I'm able to do them laying down.
All in all, she says I'm doing good for just a week in. So even though it was quite exhausting and painful, I'm feeling pretty good about my progress so far and everything going on. Just keep reminding myself, one step, one day at a time. It's going to be slow and there are going to be difficult days, but progress is progress. There is so much changing and big things in the works for my near future and I just need to keep working towards them.

Turning my old #Filofax into a help-myself journal: details of #teas and #essentialoils and how they can assist my meds. #empowerment, y'all. Yes, I made myself laugh (I do that a lot): the note in the upper right starts with a #katyperry lyric & ends with my #snark. "Baby you're a firework"
"Not really just try not to nap twice in one day"
#fatigue #vertigo #bujo #commonplacebook #2017 #cursive #carlaclaradox #paper #journals #handwriting #doodling #bulletjournal #journalselfie #organization #quotes #planner #beyourownhero #eds #edsiii #ehlersdanlos #hypermobility #chronicillness #spoonie #zebra

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!! 💪😉😊😝

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