#ehlersdanlos

MOST RECENT

#Repost @richelle_elissa with @get_repost
・・・ I don’t talk a ton about my health on here but since I’ve mentioned feeling crappy quite a bit lately I figured I’d share one of the major things I deal with. ••••••
🦓 Ehlers-Danlos syndrome is a group of genetic connective tissue disorders. I have hEDS. This condition effects my joints... and pretty much every system of my body. ••••••
As a result I also deal with POTS and other forms of dysautonomia which is dysfunction of your autonomic nervous system (which is what controls your heart rate, blood pressure, sweating, breathing, digestion, and more...) , a type of mast cell disease, gastroparesis and other digestive issues, CCI and spinal abnormalities, an excruciating amount of pain, and a number of other diagnoses I won’t bore you with. •••••
I’m also a former epileptic and have survived a craniotomy (basically “open” brain surgery) during my teenage years for an unrelated condition. ••••••• My health started to rapidly decline again a few years ago and I’m slowly trying to regain abilities and manage these conditions so I can properly live my life and finish my bachelors degree! ••••••
Squishies and doll collecting started as a coping mechanism for me for both physical illness and my #ptsd . I’ve enjoyed art my whole life so I’m hoping to learn doll customization and resin and clay work too! 😊
••••••
Just thought I’d share since I’ve been a bit vague about health struggles. No worries— this account will still be focused on kawaii things and #toycollecting and my #dollcollection . I just wanted to clarify things a bit. ••••••
#ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #zebrastrong #medicalzebra
Image Credit goes to the source originally cited by the person I reposted from

My loyal recovery buddy Roger. Cats are such good healers and friends. ❤❤❤
#catsofinstagram #catsofworld #chronicillness #chronicpain #ehlersdanlos #pots #dysautonomia #blackcatsrule #housepanther #catsrule

My loyal recovery buddy Roger. Cats are such good healers and friends. ❤❤❤
#catsofinstagram #catsofworld #chronicillness #chronicpain #ehlersdanlos #pots #dysautonomia #blackcatsrule #housepanther #catsrule

TRIGGER WARNING: SURGERY PIC
I am doing super well! 5 hours post gallbladder removal and I am up and walking and making a bowl of ramen! It was laparoscopic outpatient. I am so relieved this surgery went so well, my last one ended with me in the ICU and 2 blood transfusions! Stay strong my fellow chronic illness warriors!
#chronicillness #chronicpain #ehlersdanlos #pots #dysautonomia

•I feel like I am disappearing before my own eyes. I’m very anxious to get my gastric emptying study done and whatever else they have to do to figure out why I can’t eat food. The waiting game is the worst... especially while being incredibly unwell, not eating, and feeling so sick every day.
Is anyone else going through this? ✨💛
.
.
.
.
.
.
.
.
.
.
.
.
.
#chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #IBD #IBS #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy

Så är det. EDS syns inte och vi är oerhört bra på att dölja smärtan.
På gott och ont.
------------------------------
Regrann from @ehlers.danlos - Not all pain is visible #myedshurts
#EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS #vEDS #cEDS #HSD - #regrann

As I get lower on my medicine, the reality is hitting me that soon it will just be me and cannabis in this fight against pain in my body. Since I moved states my doctor can no longer prescribe narcotics and tramadol is technically a narcotic. Smh. This scares the hell out of me with all my pain. I did call and got an appointment with a primary at a comprehensive pain clinic for next week. The doctor said he knows of Ehlers Danlos, but I am not holding my breath as so many times I have heard this and I get there to the doctor using google.😔Part of me wants to remain hopeful that maybe after 27 years I finally found a dr who knows of EDS, but my PTSD and past experiences with the medical community have my anxiety and guard up. I do have my plan now and I have decided if I have to chose between narcotics and cannabis I will choose cannabis, though lets be honest both would be so helpful. I will also listen to what they have to say, but the surgery talk is for the birds. I made it too long without to cave now. I am really hoping though that he can at least manage and track my conditions as well as order the test that I need through out the year. I know that sounds pretty bad, but after getting screwed so much by the medical community the goals are pretty small. Best case I found my needle in the haystack finally after 27 years. I am excited and nervous but it is the first step that needs to be taken for my health. On a side note I really wish us with chronic illness could order our own testing lol we know what we need...why must we argue with drs to get it?! If you are struggling to find a dr as well I am here fighting with you! Trust me I want to give up some times, but one day we will find our one that will finally say I UNDERSTAND! 💕🙌
.
.
.
.
#spoonielife #chronicillnessblogger #chronicpain #chronicillness #medication #heds #ehlersdanlossyndrome #chronicbackpain #herniateddisc #ehlersdanlos #holisitichealth #holisticmedicine #legalizemedicalmarijuana #marijuanamovement #mentalhealth #nevada #lasvegas #lvcannabiscommunity #medicalrefugee #risingzebra

I used to live in the world of “When I can eat again”, until finally one day instead of worrying about when/if I can do this one thing that I needed to learn how to live in this current moment. 🖤 - so many times when I say I can’t eat people have many different reactions one is always “I’m sorry”, “will you ever be able to eat again”, “What can they do to fix it?” Honestly for me there is nothing to fix, if someday there is a cure for Gastroparesis and they discover a way I can eat again of course I would love to jump at the chance but for today this is my life and I want to just accept and love myself in this moment. ✨
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
#thegirlwhocanteat #model #modeling #nontoxicbeauty #nontoxicskincare #nontoxicmakeup #greenbeauty #crueltyfreebeauty #crueltyfreemakeup #eds #ehlersdanlos #ibd #crohns #crohnsdisease #gp #gastroparesis #eds #tubie #beautywithatube #changingthefaceofbeauty #differentlyabled #disabled #spoonie

I push my glasses up onto my forehead and rub my eyes. Looking at the clock I can see that I've been working for 6 hours. I stand up and walk to bed, picking up my book as I pass the table.
This book has been my biggest escape. When the pain is bad and my emotions are in flurries this book has me. It reminds me of the Africa I miss so much. I really dont know how to explain it. Theres something so soothing in being able to slip into its pages filled with English and Swahili, not skipping a beat, feeling like I've been to the places it describes because in a way I have.
I keep telling myself that God would not have put a calling in me if it wasnt his intent to have it answered. I cant go back soon, I know this. He knows this. But i know my time in Africa isnt done yet. I didnt say my final goodbye. Theres more of my story to be written there and this book reminds me every page. I've been really fatigued lately but in relatively good spirits. A calm chaos if you will. .
.
Image description: abby's legs, in tattered Jean's, on top of them rests a book. The cover is an acacia tree and the title is "Leopard at the Door" her hand rest gently on it.
#eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #POTS #POTsie #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness #chronicpain

When holding onto your health becomes a full time job... Just keep on smiling on!.. Over the last 2 weeks I’ve been on the tilt table, had 5 ECG’s, one 24hr blood pressure monitor, 32 heart and blood pressure tests, 10+ hours of MRI scanning, 1 litre of liquidised food whilst strapped to a bed with monitors on, a spirometery test, 9 vials of blood taken, worn 3 hospital gowns, helped organise and run a fundraiser and done 3 hours of documentary filming.
Phew! No wonder I‘ve spent 44 out of the last 48hours stuck in bed! 2 of those 4 hours were spent at Gynaecology today discussing another operation I need.

It seems having effective connective tissue is pretty damn important after all! 😅🤒🤕

Whilst the clients are away the trainers do train 🤣
.
Yesterday our trainers had the place almost to themselves and train hard they did, don’t be mistaken by the smiles, that’s just us. .
It’s such a balance making sure that you make time to train yourself as well as everyone else.
.
Our trainers are real people, with real lives and are no different they have injuries and restrictions they have to manage just like you. So when you think it’s not for you because you’re not 💯 that couldn’t be further from the truth. Don’t put of training ask for assistance and we’ll guide you.
.
#vibrant247 #personaltrainerstraining #noexcuses #gymlife #wearehuman #strongerthanyesterday #scoliosis #ehlersdanlos

After 14 months of wearing the Aspen Vista neck brace, I’ve finally accepted that big green Chokers just aren’t going to hit the runway anytime soon. ... So, I turned it black and unleashed my inner sparkle on it over the last few days, whilst stuck in bed! “Life won’t sparkle unless you do” “Better a diamond with a flaw than a pebble without imperfection” -#Proverb

I’m weirdly looking forward to wearing it tomorrow... 🤷🏼‍♀️🤣✌🏼

i had an appointment & unfortunately learned the end of my colon is quite stretched. taking care of it is going to take time & for rn will take my independence, and removal of the end may be something we consider in the future. i’ll be going to the hospital daily and working with my dr and nurse to figure out details this coming week. but I’m very grateful for more answers and a plan 🙌 Having cEDS, my complications can be quite different than other types, but I’m sure there are some of you out there feeling the same way. I was very reluctant to share this “taboo” subject, but I want anyone else to know they aren’t alone in their battles 💕

Current State of My Response to Today’s Officially Official No Take-Backsies Diagnosis By A Geneticist of Hypermobile Ehlers-Danlos Syndrome:

To all those doctors who said I had “conversion disorder” or “somatoform pain disorder” (which are medical terms for “you’re faking, you dirty liar”) or some other bullshit . . .
#HelpfulMemes

Baked a gluten free French Apple Cake using apples from our backyard. It's so good and makes me so excited for fall! It was also my first time baking while non-weight bearing and wearing a cast. That was a #challenge, but I'm glad I tried it. .
.
.
.
#frenchapplecake #frenchcake #french #fall #apples #glutenfree #glutenfreebaking #glutenfreecakes #glutenfreecake #backyardapples #apple #baker #baking #cake #homemade #hobbybaker #cast #anklestablization #anklesurgery #nonweightbearing #ehlersdanlos #eds #ehlersdanlossyndrome #spoonie #chronicillness #chronicpain

Most Popular Instagram Hashtags