#ehlersdanloslife

736 posts

Loading...
Just realized that I could justify buying fancy tape to go with my costume and count it as a show expense #wpgfringe #tiredofbiege #ehlersdanloslife #itsadesignchoice
Loading...
Every time I think I’ve already accepted the fact I was born with an illness(#EDStype3 )something happens that makes me have to grieve for all I have lost and am losing and will lose all over again.Like a month ago I found out that all my fillings were leaking that I had gotten done years ago-dentists kept saying how I need 5 crowns and how it’s not normal for people’s fillings to fall apart this early and basically it’s linked to my #EDS .My teeth were fine 6months ago but now suddenly I need tons of work done.My family can’t afford to pay for 5 crowns this year all at once-like it’s such a burden on them.I don’t want to be a burden but having to constantly be reminded of how much money I’m costing my parents crushes me.i chip in when I can but not like I can work...All these dentists keep blaming me,they don’t understand how bad teeth run in my family and how my genetic disease effects my dental health.Its been weeks since I somewhat came to terms with it but yesterday I was getting another crown in.My nerve was too close to the top of my tooth so I was in tons of pain.They put pain medication into my tooth twice and it didn’t help at all-I’ve never been in that much pain at the dentist.Realizing it didn’t help was so scary.I know lidocaine doesn’t work for a lot of Zebras and I’ve been lucky to have that work for me-but realizing such an important medicine I needed to get through that process was terrifying.It made me feel so broken.Nothing in this world makes me feel so broken like my EDS does.I love my fellow Zebras but experiencing the burden that is EDS makes me wish I was never born,makes me wish no one with EDS would have kids because no one should have to suffer like this and feel like a constant burden.I cried at the dentist office-i never cry in public.Some people I know have asked me how I was this week and I tried explaining how they felt-no one got it and it just made me feel more alone and worse.I’m grieving all over again for this broken body,I’m grieving for my family’s loss of a daughter/sister.I just wish I could stop having to grieve but things keep coming up.On a bright note,I took this #CBDgummy (rest of post in the comments)
So I haven't posted in a while and for those who've not seen my stories or missed it, I thought I'd explain what's going on. I had a fall that's resulted in injury and pretty massive pain in my back, neck and left leg. As a result of this I'm now fully bedbound and I've been in hospital for the last 11 days and doesn't look like I'm coming out any time soon. My care needs have gone up massively so can't be met at home at the moment (we're working on it) and my pain levels can't be controlled outside of hospital currently. I'm awaiting being transferred to a hospital closer to home. But despite all this I am still positive! I will keep fighting! I serve a God bigger than all of these issues and He is with me in all of this. Things may seem dark but I will get through this and keep going. Being bedbound has brought many challenges but I'm learning how to function and survive like this so that's good. In physio we may only be making small steps but as this quote says, I'm still moving in the right direction and I've not stopped progressing so I'm doing the best I can and that's great for right now. #ehlersdanlossyndrome #eds #ehlersdanloslife #hospital #bedbound #spoonie #spoonielife #chronicallyill #disabled #disability #chronicpain #chronicpainsyndrome #christianspoonies #heds #sickbutstrong
For anyone who struggle to crib a pen I HIGHLY recommend these. I got them off the app "Joom". I struggle with my muscles and my EDS when it comes to pens with the strength and my fingers locking, joints moving different ways and these, wow, they've change how I hold the pen and I don't have to try and grip something so small. I'm in love!! #eds #ehlersdanlosawareness #ehlersdanlos #ehlersdanloslife #ehlersdanlossyndrome #edslife #edszebra #zebra #heds #veds #spoonie #spoonieblog #spooniegirl #spooniewarrior #spoonieliving #spooniefighter #penpalling #writing #penpal #musculardystrophy #weakness #disabilityblogger #disabledandproud #disabilitynotinability #chronicillness #chronicillnesslife #chronicallythinking #chronicfeed #invisibleillness #invisibleillnesssupport
Can’t tell if foot hurts because scar tissue is swollen, or scar tissue is swollen because foot hurts #ehlersdanloslife #somanystitches #summerisntmyfriend
Just finished my #lidocaineinfusion at the #painclinic in #londonontario 45 minutes went by so quick! #chronicpain #chronicpainawareness #chronicworrior #ehlersdanlossyndrome #ehlersdanlossyndromeawareness #edsawareness #ehlersdanloslife #lifewithachronicillness #lifewithchronicpain This stuff actually works but it only lasts me about 3-4 weeks and I only go back every 3-4 months. Although, with this, my actual daily pain meds are working much better, I’m even at a lower dosage now.
Hugs shouldn't hurt! One of the more annoying things about #EDS is how painful hugs can be. I wish more people would be cautious and hug gently because our contents may shift! #ehlersdanlossyndrome #edsawareness #chronicpain #ehlersdanlos #ehlersdanloslife #ehlersdanlostype3 #ehlersdanlossyndromesucks
Adventured to the sunlight today and for a wonderful early birthday meal with a friend 🌞 Today is a bit of a tough day as it would have been one of my good friend's birthdays who passed away a year and a half ago but I'm trying to focus on the good memories and enjoy the day nonetheless. Pain levels pretty high but I've had a lovely day despite it! Home for sleep and recovery soon for sure though 💛 Hope everybody is having a lovely day 💕 #ehlersdanlossyndrome #eds #ehlersdanloslife #ehlersdanlos #chronicillness #chronicpain #chronicallyill #disabled #disability #wheelchairlife #funinthesun #wheelygood #spoonie #spoonielife
Time in the sun 🌞🌻🌞 Life is still fun even despite my new chair and I hope I can properly show that. Being in the chair full time for now is good as it allows me much more freedom and self esteem instead of being bedbound so I'm pleased I have that opportunity. Also, things like washi tape and cushions are great for making it feel a bit more like it's mine and a bit more comfortable in it. And as time goes on, my friends are getting better at pushing it 😂 Hope everyone else is having a lovely day 💛 #ehlersdanloslife #ehlersdanlos #ehlersdanlossyndrome #wheelchair #fulltimewheelchairuser #spoonie #spoonielife #disabled #disability #chronicpain #chronicillness #wheelchairlife #chronicpainsyndrome
"Sometimes the most important thing in a whole day is the rest we take between two deep breaths." - Etty Hillesum
Day 21. One thing EDS has taken from me. I'm going to be broad here by saying, the ability to be active. Being active for me was HUGE!! LITERALLY HUGE!! I would swim 3 times a week, walk everywhere and run daily. Being active meant I was also able to work the jobs I wanted. At the time in a children's hospital whilst also in training to be a paramedic. The loss of my legs was a HUGE knock back for me and I grieved awful. BUT I am praying that once my leg from surgery heals I'm going to try and be brave to go swimming again. #mayforeds #edschallenge #ehlersdanlosawareness #ehlersdanlossyndrome #ehlersdanlos #ehlersdanloslife #eds #edslife #edszebra #zebra #raredisease #illness #sickness #grief #loss #spoonie #imstaspoonie #mylifeasaspoonie #spoonieliving #chronicillness #chronicillnessawareness #chronicillnesssupport #invisibleillness #invisibleillnesses #invisibleillnesswarrior #thatsmylife #mylifeimanutshell #wheelchairuser #disabledgirl #disability
Day 19. Have i ever experiences ableism, hell fucking yes. I've added a few pictures on this post. All of which I have needed mobility aids of varying differences. I was awarded the disabled title a year before the picture with me and the red crutches. I have lost count for the amount of times I would park in a disabled parking space and have someone tell me I shouldn't be parked there. I'm too young, I walk to fast, I'm too able to warrant a disabled bay. The list goes on and on. I always say now, that in the case of ableism, I am so lucky to be a full time wheelchair user now as I don't have to have the disgusting looks, bad mouthing or fear of doing something too able bodied like. #mayforeds #edschallenge #ehlersdanlosawarenessmonth #wheelchair #wheelchairuse #crutches #walkingaids #notalldisablitiesarevisible #eds #ehlersdanlos #edszebra #zebra #raredisease #daretoberare #chronicillness #chronicallysick #invisibleillness #invisibledisability #invisibleillnesssucks #chronicillnesswarrior #ableism #discrimination #fightforourrights #weallbleedthesame #disabledlife #disabledlivesmatter #ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlosproblems
I've recently been diagnosed with Ehlers-Danlos Syndrome, a disorder which causes laxity in various connective tissues (for me this mostly means joint laxity but it also involves other skeletal and skin issues). It's been a relief and a learning experience to start understanding EDS and how it affects me. It's a weirdly inconsistent thing. I'm capable of amazing feats like walking 18km in a day just exploring Rome and taking pics. But sometimes I have severe joint pain and indescribable fatigue. My joints are also liable to pop out of place, the result of which is somewhere on the spectrum of uncomfortable to excruciating. Whether I'm doing great or struggling, you probably wouldn't be able to easily see just by looking at me. One of the reasons why I wanted a diagnosis (and there were quite a few) for my pain and fatigue was so I could have the validation necessary to ask for a seat on a crowded tube after an outing in London. Small things like that actually make a huge difference. I've been really impressed with this effort by @transportforlondon to recognise and help people with invisible illness navigate public transport. . . #invisibleillness #ehlersdanlosawareness #ehlersdanlos #ehlersdanlossydrome #ehlersdanlossociety #ehlersdanloszebra #ehlersdanlosgrrrls #ehlersdanlossyndromeawareness #transportforlondon #ehlersdanloslife #ehlersdanlosproblems
I know it's no longer may but I'm only on day 18 and we'll, there's no harm in still raising awareness for Ehlers Danlos Syndrome!! So do I consider myself to be disabled?! NO NO NO!!! When I first became a full time.wheelchair user, Yes I very much did think of myself.as disabled, I couldn't cope with not being able to do all that I use to. Now, I tell myself if I really want to do something, I will find a way. I will find MY way!! I feel that this statement aplies to me "you are only as disabled as you feel you are". This theory has gotten me into some VERY sticky situations where I have caused myself some harm but the knowledge that I was able to do something so many people told me I couldn't, completely trumped everything. #edschallenge #mayforeds #ehlersdanlosawarenessmonth #spoonie #spoonieofinstagram #spoonietruth #spoonielife #edszebra #zebra #daretoberare #raredisease #ehlersdanloslife #ehlersdanlossyndrome #disabledlivesmatter #disabilityconfident #chronicillnesssucks #chronicillness #disabilityisnotinability #chronicillnesslife #chronicallysick #disabilityawareness #disablednotunable #disabledblogger #disabilitylife #disabilityblogger #disabledandproud #disabledlife #disabledgirl #chronicillnesswarrior #disabilitypride
My new pens arrived! Life with Ehlers Danlos Syndrome has many challenges. I’ve found it increasingly more difficult to hold a pen, especially for extensive periods. I tried these pens at my OT appointment the other week. They are great, they take some getting used to but I’m definitely starting to see the benefits. Here’s hoping this continues! #ehlersdanlossyndrome #ehlersdanlosproblems #ehlersdanloslife #zebra #zebraproblems #poorproprioception #onelessproblem #penagain #ehlersdanlosawareness #ehlersdanlosawarenessmonth
Day 6. Mobility aids. Because of the limited number of pics h can add, I've just added a few of the mobility aids I have. I'm now a full time wheelchair user to which I have both my manual and electric chairs. I only have my manual now as a no up for if the electric breaks. I have a 7 seater motability car where I can drive my chair straight into the back of it. I have a stair lift to get me up and down my home. I have an electric back door which opens on a key fob that has one button to open and shut it. I have AFOS, knee braces and wrist braces as without these I wouldn't be able to transfer into my chair and I would be stuck in one place. This is just a small bunch of mobility aids I need on a daily basis to give me as much independence as possible. #chronicallyliving #chronicallyawesome #chronicillnessawareness #spoonie #chronicillness #chronicallyfabulous #disabilityblogger #mobility #mentalillnessisreal #invisibleillness #mentalhealth #invisibleillnessesarereal #livingfree #chronicdisease #spoonieforlife #spooniestrong #spooniegirl #eds #edsawareness #edsawarenessmonth #mayforeds #edschallenge #edszebra #ehlersdanloslife #ehlersdanlossyndrome
So listen. I'm at an ER in Asheville, North Carolina, because WHY WOULDN'T I BE? I got this abscess about 5 days ago on my gum/tooth on my tooth that got a root canal last year. I never got a crown on it because insurance doesn't that ish! So I email my physician and I'm like, "I've seen human skulls with abscesses, so basically, am I gonna die if I don't treat this?" 😂 and she's like "nah, but you gotta go to a hospital and get antibiotics." So, here I am. My tooth is throbbing. And, I'm in a hospital totally advocated for by Jesus. I'm nervous. I hope they aren't Christian scientists. But the Sierra Nevada Brewery is right down the road. So, there's that. #neveradullmoment #mylife #ehlersdanloslife #roadtripping #northcarolina #gimmebeer #anthropology #archaeology #teeth #ouch
Day 5 - Am I stretchy? Simple answer to that is YES. Far to stretchy. The skin on my chest, arms, neck and face I can pull out to a minimum of 4inches. Because of this, my skin tears so easily. All I have to do is bend a little bit further than my body is ment to and I will end up with skin tears, which sadly results in a lot of scars. I remember when I was in ICU once, my mum walked in to the nurses taking the piss out of all the stretch marks on my neck, chest, arms, boobs and tummy. She was not best please that's for sure!! #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlossyndrom #ehlersdanlosproblems #ehlerdanlossyndrome #ehlersdanlossyndromesucks #eds #EDS #edszebra #raredisease #zebra #spoonie #spoonieblog #spoonieforlife #spoonieliving #chronicillness #invisableillnessblog #invisibleillness #invisibleillnesssucks #spooniegirl #hEDS #veds #raisingawareness #edschallenge #mayforeds #stretchy #invisibleillnessawarness #chronicillnesswarrior #fighter
Since ive been in my wheelchair my hypermobility in my legs hasn't effected me as much, my ankles and knees don't bend like they use to when I was walking but they bend in a different way for when I'm transferring between wheelchair/sofa and moving in bed. My hips, arms, shoulders, neck, hands, well, the rest of my body however is still so bendy it hurts A LOT. Having bendy joints certainly makes the dislocations happen far to many times on a daily basis =( #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlossyndrom #ehlersdanlosproblems #ehlerdanlossyndrome #ehlersdanlossyndromesucks #eds #EDS #edszebra #raredisease #zebra #spoonie #spoonieblog #spoonieforlife #spoonieliving #chronicillness #invisableillnessblog #invisibleillness #invisibleillnesssucks #spooniegirl #hEDS #veds #raisingawareness #edschallenge #mayforeds #hypermobility #disslocation
I was officially diagnosed with EDS early 2017 following the biopsy but my neuromuscular consultant had suspicions in late 2016. The reason it took so long for her to diagnose EDS was because I was also having a sudden decrease in muscle mass and I became a full time wheelchair user after an admission to hospital in 2015. She wanted to rule out any other illnesses. Unfortunately though, along with the EDS it was found that I had muscular dystrophy. #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlossyndrom #ehlersdanlosproblems #ehlerdanlossyndrome #ehlersdanlossyndromesucks #eds #EDS #edszebra #raredisease #zebra #spoonie #spoonieblog #spoonieforlife #spoonieliving #chronicillness #invisableillnessblog #invisibleillness #invisibleillnesssucks #spooniegirl #hEDS #veds #raisingawareness #edschallenge #mayforeds #biopsy #musculardystrophy #diagnosis
So I'm a little late but May is Ehlers Danlos awareness month. This is a rare disease that royally sucks!! For me though, being told I had this illness was actually a blessing as it provided answers and a treatment plan. There r multiple different types of EDS. I had a muscle biopsy and a lot of blood taken that provided my diagnosis and I have both vEDS and hEDS!! #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlossyndrom #ehlersdanlosproblems #ehlerdanlossyndrome #ehlersdanlossyndromesucks #eds #EDS #edszebra #raredisease #zebra #spoonie #spoonieblog #spoonieforlife #spoonieliving #chronicillness #invisableillnessblog #invisibleillness #invisibleillnesssucks #spooniegirl #hEDS #veds #raisingawareness #edschallenge #mayforeds
Last night I pushed play on a workout around 9pm. Not because I had to but because I wanted to. My pain levels have been pretty high and I was mad I couldn’t do a higher intensity workout, but then I realized I didn’t have to go a gym and be embarrassed my body hurt or only be able to lift a small amount of weight. I decided to do a Core De Force workout. And it kicked my butt! But I loved every single moment of it because I was doing it for me. . It’s not about how long you worked out or how many calories you burned, it sometimes is just listening to your body. I am thankful I have a program that allows me to work with my condition, my body to get stronger, and get some self love in. . . . . #ehlersdanlossyndrome #eds #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlossociety #beachbody #beachbodycoach #beahbodyondemand #fitness #mentalhealth #mentalhealthawareness #motivation #icontrolmybody #modification
You come to a space where you no longer recognize your physical self. All it does is cause pain, and even more unwanted side effects and symptoms. Hands on your body can briefly be magical--craniosacral and myofascial massage therapy, exchanging the oxytocin boost of a hug. But there is a part of you that knows your body and you are no longer truly connected. It's been severed. 📷@spazzoiid @strongerthanpots #edsawarenessmonth #ehlersdanlossyndrome #ehlersdanloslife #ehlersdanlossyndromeawarenessmonth #eds #chronicpain #chronicbabe #spoonie
May is Ehlers-Danlos Awareness Month #EDSawareness #ehlersdanlossyndrome #spoonie #ehlersdanloslife
Life is tough darling, but so am I. . . 2018 started out rough and these photos are just a glimpse into it, but this isn’t a pity story of mine. This is to spread awareness in the month of May for those who are also struggling with Ehlers Danlos Syndrome. That hardest part of this syndrome is living with something that not everyone can understand, see and always believe. And also being in excruciating pain the majority of the time. But hey, everyday is new day. A new chance. New opportunity, and new tries to start again. Although there may not be a cure and finding answers is frustrating, showing someone you know who is affected by this syndrome or even showing yourself that love, can brighten a whole day and change a full outlook. Always keep that in mind and when you get a chance, spread the awareness so that one day there may be a cure for us 🖤🙏🔆🖤✨ . . . #ehlersdanlosawarenessmonth #ehlersdanlossyndrome #ehlersdanloss #eds #edsawarenessmonth2018 #edsawarenessmonth #edsawareness #may #ehlersdanloslife #chronicillness #chronicpain #liveyourlife #lovethelifeyouhave #beautiful #bent #unbroken #beautifulbentunbroken #support #awareness
So I wasn't going to mention anything but I'm so pissed off and it's really playing on my mind. Yest morning, I woke up with my arms somehow above my head, I went to go move. I couldn't. I had dislocated both shoulder in my sleep. Soph was down stairs so I was shouting and sending the girls to her bcoz I need helping putting them back in. About 5 mins later, she had managed to pull both my arms back in the sockets. THIS IS THE BIT PISSING ME OFF. A so called friend passed a comment last night saying I couldn't/ shouldn't be out in my chair if I had so called dislocated my shoulders. Bearing in mind, I'm in an electric chair and only need to move my hand to steer, not like it was a manual self propelling chair. Now this is a very short list of some of the complications from the rare disease I have. I dislocated my joints MULTIPLE times a day and if I were to do nothing each time this was to happen I WOULD NEVER BE DOING ANYTHING. I shouldn't have to explain my life but to those dumb ass people who think they know my body and illness better than me and think they can pass comments like the do, just fuck off, I do not need people like u in my life making me feel so shit!! #chronicillness #disabilitylife #invisibleillness #invisibleillnessawareness #chronicallyill #disabilityblogger #invisibleillnesses #chronicillnesssucks #chronicallysick #invisibleillnesssucks #spoonie #spoonieproblems #eds #EDS #edszebra #ehlersdanlosawareness #ehlersdanloslife #ehlersdanlosproblems #growup #jogon #raredisease
So far the clients who've checked in from May have lost over 24 pounds! For 5 years I've had the privilege of helping new people every month get the results they have always wanted! And during that time I've been able to maintain my own 43 lb weigh loss, too, with a busy mom lifestyle and so much flexibility because of Herbalife nutrition 💚 We've got room for 5 new clients in our schedule this month - who's looking for new results before summer?! * I know we can help because consumers who use Herbalife Formula 1 twice a day as part of a healthy lifestyle can generally expect to lose 0.5-1 lb a week! #thejoyteam #movementofmoms #2018isawesome #resolutions #weightlosshelp #weightlossgoals #weightloss #losetheweight #summerbody #gethealthy #getresults #Herbalife #EDS #ehlersdanloslife #chronicpain
You know you've got EDS she you can put the skin from ur chest (the rib section not ur boobs) out further that what is remotely normal lmao 🤣🤣 I can pull my chest skin away from my chest rough 15cm 😳😲😱 #EDS #edszebra #zebra #ehlersdanlosawareness #ehlersdanlossyndrom #ehlersdanlosproblems #ehlersdanlossyndrome #ehlers #ehlersdanlos #ehlersdanlossyndromeawareness #ehlersdanlosgrrrls #ehlerdanlossyndrome #ehlersdanlossyndromesucks #ehlersdanloslife #spoonie #spoonieforlife #spoinielife #spoonieblog #spoonieblogger #chronicallyawesome #chronicillness #chronicallysick #stretchyskin
Salon Day! It started with a wonderful mud mask with rain drop therapy, then a bubble massage, afterwards a blow dry and comb out , finally got my nails cut, filled and painted to match my girls nails! The end result is a very clean pup! And a very tired girl! 🐾 #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #salonday
Everyone this is my new brother red! About a week ago we found him at a gas station. We’ve tried to call rescues and dog shelters to find his owner but no one has called us back. So red is now a Blanford! My girls sister had been talking about getting an ESD or service dog for a while and this guy just loves her and has an awesome temperament. We are slowly trying him out and teaching him some things! He’s my new best friend! 🐾 #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #red #newbrother
My girl and I went to Lowe’s today to buy some supplies to start the house rebuild. It was crazy busy! But I did really well. Afterwards I went to the vet and holy moly I weigh 90lbs!! I’m gonna be a really really really big boy! The weather here has changed drastically over night so my girl and I had to grab our rain coats. Aren’t we cute!! 💖🐾 #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #rainjacket #lowes #trainingday
#haltermonitorisgone #finally #heartmonitorisnomore #thanksgoditsover #28dayhaltermonitor #28daysdown #ehlersdanlossyndrome #ehlersdanlossyndromeawareness #edsawareness #strokeawareness #ehlersdanloslife #lifewithachronicillness . I’m sooooo happy the heart monitor is finally gone! It was such a pain in the ass and kept leaving blisters on me from the stickers! 😩
(My girls not dying in this picture just suffering from allergies) Today we went and got my girls, sisters car cleaned! There were lots of people and crazy sounds! I did really good ignoring it all and staying calm! But on hour two of waiting for them to finish washing the car my girl finally gave me my toy to chew on. Just bc I’m big dosent mean I’m still not a puppy and I still need occasional breaks from being so serious! Hope y’all are having a wooftastic day! 🐾 #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #patience #mellowyellow
Al que madruga .... Sale como arcoiris...y mi gordis como siempre 💪💪 #ehlersdanloslife #stronggirls
so I went to soccer practice today just to sit and watch like usual bc I can’t actually play. But one of my friends asked after practice, “Sailor you look sad.” I said “I’m just sick.” (they all know ab my health issues) but what I wanted to say and honestly should have said now thinking back on it is, “Yeah that’s what happens when you have two chronic illnesses and a spinal disease..” and that kinda sums up how my day went.. Not so good. But there’s always tmw and hopefully it’ll be better. Btw if anyone was curious, that’s what a fake smile looks like.. I was in so much pain when I took this cuz my shoulder was dislocated but I couldn’t get it back in 😓 - - - - -#eds #elhersdanlos #ehlersdanlossyndrome #ehlersdanlostype3 #ehlersdanloswarrior #ehlersdanloslife #ehlersdanlosgirls #pots #potssyndrome #posturalorthostatictachycardiasyndrome #potswarrior #potsie #potsawareness #degenerativediscdisease #spinaldisease #spoonie #spoonielife #spooniestrong #spoonies #spoonielove #spoonieproblems #spoonieprobs #spooniegirl #anxiety #depression #depressed #chronicillness #chronicloveclub #chronicpain #chronicfatigue
So I had my second chiropractic app. this morning.. they said that I have degenerative disc disease stage 2 (theres 4 stages) and two other things that I don’t remember rn.. the first adjustment went well and I’m going back for another one and some more X-rays next Tuesday and then he will tell us his treatment plan and we will decide wether ill become an official patient or not. So pretty much w the degenerative disc disease, your spine has the little pad things between each bone and mine are degenerating much faster than they’re supposed. also your neck is supposed to have a curve to it and mine has no curve and is actually starting to curve the opposite way.. I also have lots of subluxations and pinched nerves in my spine but that’s not as concerning. Anyway this is treatable and if it slows down the process then that’s good, if it stops the process then that’s amazing. But the treatment doesn’t always work in which case I’m not sure what will happen.. but I’m hoping for the best. Also these where my hands this morning, they were just a little blood shot 😂 Have an amazing day everyone💓 - - - - - #spoonieproblems #spoonie #spoonielife #spooniestrong #spooniefamily #spooniegirl #eds #ehlersdanlossyndrome #ehlersdanlos #ehlersdanloslife #pots #potssyndrome #potsstrong #posturalorthostatictachycardiasyndrome #degenerativediscdisease #ddd
Getting those fluids in and enjoying a break in the rain! Yay Spring! Had a second opinion about my Mast Cell diagnosis and got confirmation along with a thumbs up for the treatments I'm doing. I'm also starting my IV infusions soon. Hopefully by summer I'll be stable enough to go without mask...fortunately my masks are pretty :) #voggmask #mcad #pots #EhlersDanlosLife #ivinfusion #invisibleillness #springishere
Hey Guys!! Long time no update! I’m doing good been doing dog stuff lately, but training is starting back up! And my girl painted my nails tonight! It took some treats but it was fun! Hope y’all r doing great! #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #nailpaint
Sometimes you just need to stay in bed. It's been a really trying week and I'm feeling very grateful for the ability to work from home today.
Weather is gorgeous, orchard is blooming and I've got a little energy so it's time to get some work done in the garden :) This will be my sunflower beds! We've also got a beaver...didn't get any pics of him though. #oregoncoast #spring #gardening #orchard #EhlersDanlosLife #spoonie
Time to go to bed! ...which also means “time to put on protective gear so you can sleep without dislocating stuff”.
Happy New Spoonie Year 🎉 A delicious dinner with my mother. A wild evening on the sofa with my cat because i was too sick to celebrate, and a crazy night on the bed trying to sleep! Yay 🙄#happynewyear #spoonie #ehlersdanlosgrrrls #ehlersdanloslife #dysautonomiaawareness #eds #ehlersdanlos
I need all my prayer warriors!🙏🏼 Sierra McCullars has taken a turn for the worse. All of her symptoms have come back and I can’t seem to get her out of pain. Her nystagmus is back (vibrating eyes), her pain level is off the charts, her joints keep slipping and dislocating. Her head and back pain is excruciating. She has a filler put in her paralyzed vocal cord on January 9. She will have to be sedated. Her last filler has almost worn off. She will see her neurosurgeon in Little Rock, Arkansas, on February 27 unless we can catch a cancellation to go over her sitting MRI’s. She’s having so much pain, difficulty seeing, severe head, back and body pain. Pain meds just won’t touch it. She may look fine on the outside but on the inside, she’s very sick. Please pray for God to heal her. I’m working full time from home now so I can be near her. #chiarisucks #ehlersdanloslife
My new vest came in today! I love it! 💖We decided to break it in by going to tractor supply and buy a matching leash and horse feed! My girl also wanted to work on me walking next to a basked and it was so much fun! Expect for my girl can’t drive it very well... we ran into a few things.. 😬😬 What can i say she’s a blonde Spoonie🥄🤷🏼‍♀️ #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #newvest #training
next page →