#edszebras | Explore Tumblr Posts and Blogs

aspoonfullofsalt · 1 year

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Please enlighten me #EDS #EhlersDanlos #EhlersDanlosSyndrome #hEDS #HypermobileEDS #HypermobileEhlersDanlosSyndrome #Hypermobility #Hypermobile #ZebraStrong #EDSZebra https://www.instagram.com/p/Crmgpn5ravN/?igshid=NGJjMDIxMWI=

#eds #ehlersdanlos #ehlersdanlossyndrome #heds #hypermobileeds #hypermobileehlersdanlossyndrome #hypermobility #hypermobile #zebrastrong #edszebra

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thechaoticbookwyrm · 2 years

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"Don't look for zebras when you hear hoofbeats in the hallway." 🦓 . . Or... maybe you should? I got my official EDS diagnosis today, and it's fair to say I've got a LOT of feelings about it. But most of all, I'm hopeful that this means I'll finally get the medical care that I need & deserve? . . #EDS #hEDS #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #chronicillnessjourney #EDSJourney #mychroniclife #myedsjourney #zebra #zebralife #edszebra #chronicallyillauthor https://www.instagram.com/p/CkHsjCiN1Fr/?igshid=NGJjMDIxMWI=

#eds #heds #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #chronicillnessjourney #edsjourney #mychroniclife #myedsjourney #zebra #zebralife #edszebra #chronicallyillauthor

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witchery-and-wonder · 6 years

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Having an incredibly high pain day. So I'm nestled in bed with coffee in my Goddard College travel mug (avoids spills) and a copy of Madeline Miller's "The Song of Achilles" on my Chromebook. I'm loving it so far, and it helps take my mind off the pain. . . . #books #bookstagram #chronicpain #chronicillness #chronicpainsucks #eds #ehlersdanlos #edszebras #pain #coffee #reading #thesongofachilles #achilles #greekmythology #classics #mythology #queer #queerlove #goddardcollege #mylife #reading

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ravenquinzel · 6 years

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It is Ehlers Danlos Syndrome awareness month, so you'll probably see a few more EDS related posts from me this month. There are 13 types of EDS. I have hypermobile EDS (hEDS) which is the most common types and has many similarities to hypermobile spectrum disorders (hsd). #Repost @pawsomepurrtraits (@get_repost) ・・・ As some of you may know I have what’s now known as Hypermobile Ehlers Danlos Syndrome which is a disorder causing loose painful joints, fatigue plus many more symptoms. It’s EDS awareness month and to highlight this I will be completing my 50 state drawing challenge portraits in black and white, look out for these special pictures over the month! . . . #artistsoninstagram #zebra #zebrawarrior #butyoudontlooksick #invisibleillness #thinkzebra #blackandwhite #eds #heds #ehlersdanlossyndrome #ehlersdanlos #hypermobilitysyndrome #hypermobility #hypermobileehlersdanlossyndrome #edsawareness #edsawarenessmonth #hypermobilejoints #edszebra #edsawarenessmonth #hypermobileehlersdanlos #edszebrawarriors #edszebras #hypermobile #edszebrasuppport #awareness #hypermobileeds #hypermobilityawareness #hypermobilityspectrumdisorder #awarenessmonth

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bendybitchesanonymous · 5 years

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Remember folks! With Halloween coming up, food dyed black with charcoal can neutralise your medication rendering them inactive and useless! This includes contraceptive pills if you take them within 2 hours (before or after) consuming the charcoal!

#medication #take your meds #bendybitchesanonymous #eds probs #edsawareness #edszebra #edsproblems #chronically ill #chronic illness #chronic pain #chronic fatigue #all hallows eve #halloween #painsomnia #ehlers danlos syndrome #ehlers danlos zebra #ehlers danlos life #ehlers danlos problems

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benditliketoni · 3 years

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I hope everyone had a good Christmas! I’m so sorry I haven’t been posting or reblogging.

I gave birth to my little girl on the 25th November at 23:38pm. I was induced at 37 weeks due to her not growing and she entered the world weighing only 5lbs 3oz. It was a pretty traumatic experience all in all as I ended up with a c section under general anaesthetic.

Having a newborn when you have EDS has been a definite learning curve! I’m exhausted in a way that I never knew, but she is so worth it.

She is 5 weeks old today and I’ve never been so in love.

#spoonie #chronic illness #ehlers danlos syndrome #chronic pain #spooniestrong #edszebra #edsstory #edslife #edswarrior #ehlers danlos

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clinically-chronically · 4 years

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Hey guys! It's been a hot minute.

I'm so sorry for not posting for so damn long just that a lot has been happening.

I've had a few more hospital admissions, surgeries, diagnoses, and planned surgeries.

If you want to try and keep up with me on a more scheduled basis hop over to my instagram @Clinicallychronically where I post updates at least weekly.

Well let's start off with the new diagnoses.

A Mast cell disorder. PNALD, Hearing loss due to EDS and more motility disorders of the GI tract. (We're also looking into Chiari Malformation)

Mast cell wise, things have been a struggle. I've been having a lot of airway reactions and insurance is not wanting to cover my nebulizer treatment. It also has a huge effect on my GI tract as well. I suspect that it has played a large role in me not tolerating tube feeds and becoming TPN dependent.

Hearing loss secondary to EDS. This has been quite the struggle as I'm trying to get back into music performance and just music in general. As soon as I decided to go forward with it I got diagnosed with hearing loss. I have no idea of it will be progressive or not. Only time will tell. But curently I have about 65-70% of my hearing left on my right ear. Luckily the left is doing pretty okay.

Motility disorder wise, it's just more stuff related to the nerves in the GI tract being overly sensitive and my stomach being a total piece of crap. (Technically right now I'm the textbook case of intestinal failure. Yay.)

PNALD, also known as Parenteral nutrition Associated Liver Disease, is literally what you expect it to be. Liver disease because of TPN. Which in my case came A LOT quicker than any other normal case. Usually PNALD doesn't happen until 4+ years of being on TPN, but for me this has shortened to a litrle over a year. I still have an ultrasound and fibroscan to check the status of my liver.

Needless to say things are not looking well for me as things progress, and for some reason quite quickly at that. But, I'm trying to hold on.

I'll update some more about the GI situation as I gain further information as to what the plan will be. Because currently we have no plan and with PNALD and repeated infections it's not looking good for me.

But until then let's hold on and keep moving forward.

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curlyspoonie · 5 years

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My GI system is PISSED about the reintroduction of salt pills. But I gotta get back up to taking 5 grams of salt a day for my POTS. I think I'm going to see a gastroenterologist at some point, because my stomach is a general mess, and because I'm not losing weight despite being on a major calorie deficit. Ugh, chronic illness life.

#my chronic thoughts #spoonie #Ehlers Danlos Syndrome #zebra #EDS #edszebra #chronically ill #chronically sick

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101conditions-blog · 4 years

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I’m back in the tumblr community! For me the tumblr community has always been a safe outlet as I never came in to contact with people from my everyday life so I have that freedom to be completely honest w/o disregarding others’ feelings. Needless to say I’m in a bad place rn and could use an outlet.

#disabled #chronic fatigue #servicedog #spoonie #zebra #chronicillness #eds #edszebra #chronicpain #narcolepsy #seizures #Gi

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hijabi-ninjette-blog · 5 years

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“Do you have hand pain after writing” they ask, on the 11-page medical questionnaire... 🤦🏻‍♀️ #spoonie #spoonielife #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #eds #edsawareness #edszebra #zebra https://www.instagram.com/p/BxxXDFXAmTi/?igshid=czwqc4cmgb3z

#spoonie #spoonielife #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #eds #edsawareness #edszebra #zebra

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thechronicallychill-blog · 6 years

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Forever recycling photos from Cali 💁‍♀️ So today was a way better day both symptom-wise and life-wise. Day two of Lupron is always less brain foggy for me than day one. I had a very physical day at work today and actually got through it okay. My joints are all a little loose today, but I managed to move 13000 dollars of 25lb dog food bags without straining anything so that’s pretty dope. Most importantly, I met with a local non-profit today. They train service dogs almost exclusively for EDS patients and as a dog person who works in the industry and who is also an EDS patient, I’ve been following them for awhile and knew I needed to get involved. We had a super chill and productive meeting tonight and I’m excited to get to learn a new side of dog training and chronic illness. Not entirely sure what my role yet will be with this group, but I’m pumped to be with likeminded people who share some of my own struggles 🐕 #spoonie #servicedog #edszebra #edswarrior #ehlersdanlossyndrome #spooniestrong #spoonielife #dogs #dogstagram #endostrong #endometriosis #lupron

#edszebra #edswarrior #spoonielife #spooniestrong #dogstagram #endostrong #lupron #spoonie #ehlersdanlossyndrome #endometriosis #servicedog #dogs

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jamiecormier · 3 years

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The Reality of Kyphosis and Scoliosis – Guest Post by Jamie – Undercover Superhero

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windwardstar · 6 years

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I am screaming. I have always said flip flops don’t make my knees and hips hurt as much.

I have always been told they were why my joints hurt so much.

I was right. Fuck them.

#chronic pain #spoonie #edszebra #tag for me

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cianmars · 4 years

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Managed to get outside for a few mins in the sun before my head hurt too much ☀️ -  https://instagram.com/p/CAxcvzqFBbx/

#sunselfie #sunselfie☀️#sunglasses #sunglassselfie #southport #northwestengland #sundaybutnotsunday #chronicheadache #spoonie #spoonieselfie #edszebra

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bendybitchesanonymous · 5 years

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*snorting lines of turmeric powder off of a plate of vitamin C through a straw made of calcium carbonate, whilst standing in downward dog and wearing a jump suit made entirely out of chakra focusing gem stones* AM I HEALTHY YET MARGARET?! AM I TRYING HARD ENOUGH?!!

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benditliketoni · 3 years

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Been so absent on here but being a momma is fully taking it outta me. I barely have time to pee let alone anything else!

#spoonie #chronic illness #ehlers danlos syndrome #chronic pain #spooniestrong #edswarrior #ehlers danlos #cute #edszebra #pretty

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