#ehlersdanlossyndrome

237,388 posts

Loading...
Loading...
Happy late new year everyone, today I went to get the second half of my root canal done. It all went well but after the root canal my dentist had a look around at my other teeth and found 4 or 5 different holes and one tooth we may have to pull out I have another appointment booked for the 31st January with a different dentist to give me fillings in those. I have a little bit of pain now but nothing major which is nice. I have an appointment with my GP tomorrow and I'm going to ask if my orthopaedic surgeon referral has gone through, fingers crossed Hope you all have a good day xx #ehlersdanlos #ehlersdanlossyndrome #EDS #hEDS #connectivetissuedisorder #hypermobility #HMS #fatigue #chronicillness #chronicpain #invisibleillness #rootcanal #rootcanaltreatment #dentist #dentalfilling #dentalwork
Major pain day again, I feel drained and exhausted. I'm sick of being tired and sore. My brain cannot even comprehend today or what I want to say. Mind my language but I'm just F$#king tired. #chronicillness #chronicpain
Did some training at the mall while I waited on my sister to get off work. Denali is improving everyday on retrieval and was doing amazing responding to "falls" and faints also did some interruption and take downs not by my want but because my heart started to act up and well Denali made me lay down with him on my chest for 10min. For a quick session he actually impressed me at how good he was doing also not to mention he was in off lead almost the whole time ❤❤💊♿ #gsd #gsdofinstagram #germanshepherdservicedog #germanshepherd #goodboy #gsdservicedog #servicedogeducation #servicedog #ehlersdanlosservicedog #ehlersdanlossyndrome #ehlersdanlos #edsawareness #servicedogtraining #mall #invisableillness
Today is my 6 year #surgeversary !! My life completely changed that day six years ago and I’m so grateful for my surgeon, Dr. Ghazal and the amazing job he did on my #fulkersonosteotomy I can do things like run, dance, hike and march that I had given up on ever being able to do again because of my #fulkerson I will always look back on today and remember how blessed I was to have Dr. Ghazal in my life. #kneesurgery #kneereconstruction #sixyearslater
Tonight was the first night of conversation for the Spoonie Study! We had our first livestream (which you can replay for the next 24 hours if you missed it!) this was a huge victory tonight after months of preparation. God is so good! Update: I don’t have to be in my collar during the day all the time unless there is active joint pain/instability but I will be wearing the collar at night and in the car. Taking it little by little, spoon by spoon 🥄 PS please excuse all of the Christmas decorations they are being put away this weekend 🤷🏼‍♀️ #spooniestudy #onlinebiblestudy #cultivatewhatmatters #littlebylittle 🙌🏻 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Today was hell. Thankfully the positive is tomorrow is a new day. Traumatic things happened and I’m just hoping I can get past it. My mind and body has to heal eventually from it. Just need to accept it might take some time. At least I have the gorgeous lights to look at and my cats. #chronicillness #chronicpain #chronicpainwarrior #ehlersdanlossyndrome #pots #potssyndrome #dysautonomia #autonomicdysfunction #hipdysplasia #invisableillness #brainfog #potsie #everythingwillbeok #cats #mysafeplace #tomorrowisanewday
We want to here your stories! Comment them down below! #friends #friendship #chronicillness
Everyone at physical therapy loved my outfit today. I'm almost a month out from my surgery that fixed my torn meniscus and I'm doing great! My surgeon and therapist both understand #ehlersdanlossyndrome and I feel amazing! No brace, no cane, and almost back to full "normal". 💪😊 God is good, all the time, y'all! I'm excited to see my surgeon next week and surprise him with my strength and stability! #blessed
Dairy, egg, nut, and wheat/gluten free Lemon Meringue Pie🥧🥧 Taste is on point! But.. the lemon filling did not set. For allergen free pie would definitely give this pie high marks! #eosinophilicesophagitis #allergyfree #dairyfree #ehlersdanlossyndrome #allergyfreebaking
I was long overdue for my cardiologist checkup so today we went. When the geneticist had gone over the hEDS criteria list with me, I realized recently that I didn’t know one of the cardiology questions. So I asked him today what my “aortic root dilitation Z score” was. He hadn’t heard of a Z score. Didn’t know what that was. No clue. Hmmmm...in the car I did a quick google search and Z score info is all over the place. Guess it’s time to change cardiologists. 🤷🏻‍♀️Having a rare condition, or one that it rarely diagnosed, is interesting. I have not had the horrible experiences of mistreatment that some have had, so for that, I’m grateful. But I am growing tired of being the one to educate my doctors about an alternative MRI, moving xrays, possible diagnoses, etc. There’s a delicate balance to be found within researching for yourself, trusting your doctors, being your own advocate, sharing information with others, not judging when someone chooses a different road to medical help than you, knowing when to switch doctors, trusting your gut that it’s time to demand an answer, and the all-important rest to be found in the Lord when we trust in His plan for our lives. I’ve read that @joniandfriends Joni Eareckson Tada said that she wouldn’t trade her paralyzing injury for the closeness she has gained with the Lord. Now that’s a level of trust to pray for. #ehlersdanlossyndrome #hypermobility #myeds #dontmisstheblessingsinthetrial #knitforhealing #knittersofinstagram
Flashback to the only trip I’ve taken in the last 6 years. Hubby and I drove to Banff in April/May 2017. 💜 💜 💜 💜 💜 💜 💜 💜 #homemaker #homemaking #spoonie #spoonielife #disabledmom #disabledmum #edsproblems #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #invisibleillness #cci #craniocervicalinstability #momlife #flashback
ICU UPDATE the night shift doctor said I’ll be scoped in the morning since my BP’s looking better, which means I’m allowed food or liquids until 12 after NOTHING ALL DAY, and I might actually propose to the night shift supervisor who found me a non brand approved Diet Coke and some red jello bc it made me feel human enough to strike some #hospitalglam Renaissance-style red thread of fate pose attempts with my blood products infusion tube (scroll through 🌚) thanks for all the wishes and prayers, y’all, and continue them that I get my meds to sleep tonight and a good scope tomorrow.
Flashback to me attempting to curl in 2014 😂 Even with the granny balancer thing I kept falling and seriously sucked. My raynauds was also just awful on the rink. I hurt soooo bad afterwards. 💜 💜 💜 💜 💜 💜 💜 💜 #homemaker #homemaking #spoonie #spoonielife #disabledmom #disabledmum #edsproblems #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #invisibleillness #cci #craniocervicalinstability #momlife
What are the odds? Never bet against Occam. #butyoudontlooksick #neverbetagainstoccam How does sick supposed to look like anyway? Organized my binder because #theblindmenandtheelephant & #DrAfrin was right. Yes, I carry it to every doctor’s appointment with me. I find it easier to reference something than having the doctor waste time digging through my electronic record. It saved my life when I was in the ED. I was able to find orders, labs, notes from my allergist quickly and guide the ED doctors in developing an effective treatment plan. Maybe it’s me, maybe it’s my luck, maybe it’s my binder, but most doctors listen to me in guiding my treatment. The ones who don’t, well...The last arrogant a**hole who did not believe in unicorns landed me in the ED. #itsnotinmyhead #itsinmyDNA #MCAD #mastcells #mastcellactivationsyndrome #MCAS #mastcellactivationdisorder #thisisdysautonomia #dysautonomia #dysautonomiainternational #POTS #posturalorthostatictachycardiasyndrome #spoonie #spoonielife #EDS #ehlersdanlossyndrome #rarediseases #tmsforacure #themastocytosissociety #notalldisabilitiesarevisible . #invisibleillness #chronicillness #ehlersdanlosawareness #badgened #dysautonomiaawareness #genetictrainwreck
⭐️⭐️⭐️ • “I’ve been in an organizing mood. I’ve cleaned up my room, laptop files, Google Drive, notes... but my thoughts recently have felt very disorganized. Like I can’t focus on things....” • So right after I wrote the above paragraph, I thought, “Isn’t this probably brain fog and fatigue, some of the symptoms of my chronic illnesses which are kinda flaring right now?” And, the answer is yes, most likely. Anyway, there’s not really a point to this caption other than I really need to go rest. • Writing obviously helps me think through things- what helps you?
Being vulnerable. ❤️ I will always strive to be as open as I can about not only life #glutenfree due to #celiac but also for my other issues - from mental health and #eatingdisorderrecovery and #anxiety to #ehlersdanlossyndrome and #hypermobility issues that affect how I move daily and how I work out, to my #endometriosis and my new #hysterectomyrecovery from #adenomyosis . Yes, being vulnerable opens you up to the universe’s bullshit 🤷🏻‍♀️ From people who take advantage of you and take you for granted. BUT I share because that encourages YOU to share. I’m far from perfect in this life and knowing that I’m going through tough times means helping you go through the same. I get so many messages from you - I love reading your stories and learn from each of you and your own journeys. Never be ashamed of hiding what you’re dealing with - the world would benefit from more transparency and vulnerability. Don’t be afraid to put your tough guy image aside and acknowledge the shit you’re going through. 👏🏻❤️ And yes, this was on a wall of bullshit motivational phrases at the mall during a @lululemon build-out and I had zero shame in taking this photo 📸 🤷🏻‍♀️😂
I so hope this works out. The last time I took any sort of class it was curling lessons in 2014 🥌 🧹 Out of 8 classes I completely missed 3, left 2 early and felt like I was dying after the 1 I actually managed to complete 😂 Definitely no more sports for this girl. That was back when I was still undiagnosed and thought I’d get better if I was just more active. 💜 💜 💜 💜 💜 💜 💜 💜 #homemaker #homemaking #spoonie #spoonielife #disabledmom #disabledmum #edsproblems #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #invisibleillness #cci #craniocervicalinstability #momlife
This guy, he is the the real MVP. He agreed to let me pick him up from home and drag him to the gas station with me to pump the gas. My car has trouble starting this morning and again when I left work, I didnt want the now 1/4 tank of gas to be a problem but I couldn't handle the shivers from 2 degree weather on my back. Cold weather always sends my back into spasms. With the wind chill, temps were in the negative teens at least. The weather has been pretty lately, but also painful. Puttering away at organizing my blog posts and photos. #blog #blogger #eds #ehlersdanlossyndrome #anxiety #throughcloudedlenses #catmom #traveler
I had my first vet appointment since coming to live with my girl on Saturday and everything went great! My heart, lungs, and little chompers are perfect according to Dr. B! I haven’t had any accidents in my house either. I already love my girl soo much and am so excited to change her life!• • • • • • • • #medicalalertdog #servicedogintraining #labradoodlesofinstagram #servicedog #australianlabradoodle #labradoodle #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #heds #workingdog
A lot of my time every day is spent on this floor doing exercises to help in my recovering. It gets old and it’s boring. I’d much rather be doing a HIIT workout but I try to remind myself that there are things I need to do in the present moment so that hopefully I am strong enough to do the things I want to do in the future. The routine might get old but every step gets me closer to my goal. The goal I am currently working on getting strong enough to walk on my own. Hopefully with discipline and a positive mindset I will get there soon. I absolutely love this tank I am wearing from @senita because it lists some of my favorite adjectives: determined, strong, hopeful, motivation, grateful. Is it just me or does a new workout outfit give you some motivation to get it done?! My pants are also @senita and are so comfy and cute that I wear them with casual wear too!
Repost via @collagenisforwimps Sometimes it takes something as simple as this to shift ones own perspective for a moment. ( Knowing me I’ll probably forget this by tomorrow 😂🙄) but, hey it’s working for today 👍👌🎆 #chronicpain #ehlersdanlossyndrome #workingonmyshit 🌸❤️
Oh my goodness! The sweetest para-transit driver EVER. Today when Ollie was dropping me off at home after my weekly therapy appointment, he handed my husband (who came with me to therapy for the first time this week yay! Thanks, @sub_sides ♥️) a bouquet of flowers. Odd. Well, Ollie's old-fashioned. He said he thought it might be weird to hand another man's wife flowers! Cute old man. Apparently, last Friday when he was helping me with my shopping bags, he broke one of my tulips. He thought I was just being nice not saying anything. I didn't know he broke it. I assumed I broke it putting them in the vase. Nevertheless, he bought me a whole new bouquet today to apologize for breaking a tulip and to say that Drew and I are great people. Awwwwww. My heart! Ollie is the best! . . [ID: April, a white female wearing teal glasses, with brown shoulder length hair has a big pink and yellow bouquet of flowers and big green leaves in front of her. Behind her are tan and yellow walls.] . . . #eds #ehlersdanlos #ehlersdanlossyndrome #edslife #flowers #sweet #disabledlife #disabilitypride #wheelchair #disability #disabled #wheelchairlife #chronicallyill #chronicillness #invisibleillness #disabledandcute #thingsdisabledpeopledo #bouquetofflowers #mentalhealthmatters #disabledpride #babeswithmobilityaids #endthestigma #mentalhealth #chronicpain #cpunk #cripplepunk #babewithamobilityaid #accessibility #thefutureisaccessible #accessibilitymatters
Ce n’est pas faux, mon pieds sont vraiment mal! Je pratique mon francais parce que mon fils ira a l'ecole d'immersion francaise dans quelques annees. 💜 💜 💜 💜 💜 💜 💜 💜 #homemaker #homemaking #spoonie #spoonielife #disabledmom #disabledmum #edsproblems #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #invisibleillness #cci #craniocervicalinstability #momlife
I like to joke about all my weird shit because it keeps me sane. The moments people don't see are when I don't even want to walk because the pain is so bad or when I get stuck in my head because of it. Im freezing, my pain is through the roof from pt today and I just want it all to go away. I know after pt I'll be a mess by 7pm and when I get into bed it will be even worse. I could wake up tomorrow and be okay or be worse. We are making progress, very slowly but we are and this is what it looks like. I posted a video to fb about my ass not working and it's so fun. My pt says the most hilarious things and I'm glad because it helps. It is however serious, hard and painful to make my body do simple things. It's also exhausting. Many days and nights have been spent crying from the pain, not sleeping, barely getting through the day. Humor gets me through esp when I know a crash is coming. I know it can be confusing for some so I wanted to say it. I can be laughing one minute and crying the next. It is what it is and I do my best but this shit sucks ass a lot of the time. So please don't be fooled by those who appear happy and pain free because we hide more than you will ever know. We do what we can to get through. So laugh with us and be understanding when we can't. #eds #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #physicaltherapy #pain #spoonie #asmilehidesalot #understanding #humorhelps #laughwhenyoucan
Painting a pink stripe & then a slightly smaller gold stripe on the bottom of a white pot is about artistic as I get. Here’s to super simple crafts that make you feel weirdly productive! 🌿
This is dinner tonight. Paleo friendly butternut squash soup. Mainly because I didn’t get home til about an hour ago. And I’m still having tachycardia. I put it in a thermal cup and am sipping out of it. It’s often hard to find paleo friendly pre-made meals, so shout out to @kettleandfire for making a cold night much better! . . . . #fitness #health #paleo #fitnessmotivation #ehlersdanlossyndrome #potssyndrome #chronicillness
Problem: Baby keeps shutting off the cable box. Solution ➡️ Black plastic canvas and packing tape. 💜 💜 💜 💜 💜 💜 💜 #homemaker #homemaking #spoonie #spoonielife #disabledmom #disabledmum #edsproblems #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #invisibleillness #cci #craniocervicalinstability #momlife
So when I say I’m having an allergic reaction to something...I mean allergic reaction. Folks thought I was just being irritable when I kept saying the glued dressing on my back itched so damn bad! Yeah, not kidding, no dramatics here! I see my surgeons PA in the morning. For now, I have to remove the dressing on my hip (I’m not having as bad of a reaction there) and try not to scratch. However, just getting the patch/adhesive off of my skin is a vast improvement! #surgery #adrenalinsufficiency #mastcellactivationdisorder #potssyndrome #dysautonomia #ehlersdanlossyndrome #spinalcordinjury #spinalcordstimulator #spinalinjury @boston_scientific_mena #scs
Back on board my little black beauty tonight, despite the fact my hip has been locked in spasm all day. It was good for me to try a new horse the past few weeks, but nothing compares to Cricket and the connection we have 💜 So so happy to be back riding him properly again, he’s such a superstar and always puts a smile on my face 🥰 We have a para showjumping competition in February, so we got some practice in tonight. Cricket was very keen today and pretty wizzy, got to work on keeping that calm rhythmic canter even when there’s *very exciting* jumps set up in the arena 😂 Wouldn’t change him for the world though 🖤 Also Cricket is now officially a 6 year old - such a grown up boy! #equestrian #paraequestrian #equestrainlife #paradressage #parashowjumping #disabledathlete #ridingforthedisabled #ridingforthedisabledassociation #RDA #blackbeauty #horsesofinstagram #cleverpony #youngster #horseriding #ehlersdanlossyndrome #EDS #raredisease #connectivetissuedisorder #posturalorthostatictachycardiasyndrome #POTS #dysautonomia #hypotonia #musclespasms #chronicpain #chronicfatigue #chronicillness #chronicillnessblogger #disabilityblogger #lifestyleblogger
Did you know 55% of Americans are on prescription drugs? Of these the average number they are taking are 4, and the majority of them are prescribed from different doctors. 💊💊💊💊 When you get put on the drug are you asking “what’s my plan to get off of this?” . Are you working on figuring out the underlying cause of your issues? Are you just treating each symptom with a new med? Are you just planning on being on that drug for the rest of your life? Is it going to be a tough transition to get off? . These are all questions that need to be asked! . Having many prescribing Doctors also increases your risk of dangerous interactions and less likely to pick up on when side effects of these drugs are causing issue. . Prescriptions also cause nutrient depletions, are you making up for these? . How is this playing into your life? . . . . #health #wellness #motivationmonday #naturalhealth #naturalhealthtips #ehlersdanlossyndrome #autoimmunedisease #healingdiet #ibsdiet #nutrition #fortcollins #nutritonist #healfromwithin #chronicdisease #chronicillness #healthandwellness #aipdiet #healthylifestyle
Thumb splint arrived today, I'm really happy with it! I wasn't sure about sizing so just ordered the smallest size and it fits perfectly. It stops my MCP joint from being able to hyperextend at all so I think it will work well, and bonus that it looks pretty 💖 #ringsplints #thumbsplint #hypermobility #jointhypermobility #eds #ehlersdanlossyndrome
Started off the morning with this one eating my breakfast. 🙄 Had a super bad sensory meltdown last night. Really really bad. Paying for it today so I've been resting in bed. In a lot of pain, dehydrated, and definitely flaring. I'm feeling a little more functional this evening and managed getting up to water the plants. Just so exhausted though and ready for more rest. I have a blood draw appointment an hour away tomorrow so am going to have to push through. 😴 . . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #edszebra #ehlersdanlos #ehlersdanlossyndrome #chronicpain #ehlersdanlostype3 #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #gastroparesis #dysautonomia #disabled #mcas
I had an amazing time with my friends yesterday. Being CI does not stop you from living your life, you just have to know your limits. For me I had to sacrifice a hockey game today so that I can rest so hopefully I wont have a flare up! So living with chronic pain you just have to pick and choose your battles. Listening to your body is one of the most important things I have ever learned from dealing with all my chronic illnesses. Stay strong everyone you are never alone 💘💪🏼 I am always here if you want to talk or rant about anything ✨❤️
next page →