#posturalorthostatictachycardiasyndrome

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This is helpful, and important! My PT has been helping me kick ass with slowly building up to exercise, and stretches. I think today, I over did it. I was sweating quite a bit, even during light stretches, and my vision was flashing in and out, with light orbs. (🙄🙄🙄) Symptoms started getting bad on Tuesday, and have been getting steadily worse, and tonight, it’s all about the bathroom. Migraines, throwing up, #2 , insane vertigo and dizziness, pounding heart, air hunger, throat closing up, tanked blood pressure, have to pee a ton, Norepinephrine is up to no good 😡😡😡😡 I freaking H A T E Norepinephrine dumps!!!!! Leaves me trembling for hours, and it makes me really confused, and I can’t tell what my blood sugar is, when I’m brain fogged out/disassociated/not getting enough blood/oxygen to my brain, I can’t tell what my blood sugars are, and upside down, is right side up, and backwards is forwards. I end up going through a good 20-30 test strips during a severe night like this. One instant I will feel very acidic, like my blood sugar is over 600, and the next moment, I am drenched in sweat, thinking I’m under 40. Next moment I’m freezing. I need the A/C on one moment, and the heater on, the next. Chest hurts like a b, and I’m so over it 😩😩😩😩😩😩😩😩 #Repost @slippinonspoons with @get_repost ・・・ Repost @potsiespoons #invisibleillness #invisibleillnesswarrior #invisibleillnessawareness #dysautonomia #posturalorthostatictachycardiasyndrome #potsie #chronicpain #chronicillness #chronicpainwarrior #spoonie #spooniestrong
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I’ve finally morphed into my true, full-fledged, EDS self. This is me now. *solemn face* Jk jk just found this little fella meandering across my porch the other day and had to observe him for a while. I think we bonded. It was nice.💚🐌
3weeks ago I was diagnosed with Ehlers Danlos Syndrome. I still have to get an echocardiogram and wear a heart monitor for 24hrs as the geneticist suspects I may also have Postural Orthostatic Tachycardia Syndrome, and I have to see a rheumatologist to rule out Fibromyalgia. • Basically it feels like my body is trying to kill me. I can't do even half of what most people my age can do and that sucks. It hurts to sit down, it hurts to lay down, it hurts to pretty much do anything. And not "hurt" like I scraped my knee or stubbed my toe, but "hurt" like someone's taken a baseball bat to my body and even like bones are breaking. • Every. Single. Day. • But I'm good at hiding it. When we had people over the other day they didn't see the agony their volume caused (not their fault, I'm just incredibly sensitive to sound), they didn't see the agony doing the laundry caused, or how just walking and standing was exhausting me. They didn't see how I almost passed out from pain and exhaustion, and I'd barely done anything that day. • I have an invisible illness that has made it impossible for me to do a lot of what others my age can do. And that doesn't make me less of a person, despite what a lot of people think and say. • #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #firbromyalgia #invisibleillness #invisibledisability #spoonie #spoonielife #imnotlikeyou #exhausteddoesntcoverit #chronicpain #everythinghurts
Right now, he interrupts my scratching with paws up on my leg. But I’m working on adding/changing it to the persistent nudge. He does it naturally sometimes, so I’m just pushing for more strength and insistence.
THIS COULD SAVE YOUR LIFE. Medical ID bracelets are extremely important in making sure that you are well taken care of in an emergency, but do you know what to put on yours? ••• For a rare disease patient, the best option is to list what could happen in an emergency, not the name of your unfamiliar illnesses. EMTs are well versed on common problems, not the acronyms of complex diseases! So, leave the name of your illnesses at the bottom or on a wallet card. ••• What should you put for EDS? My suggestions are “frequently dislocates”, “organ rupture”, “tachycardia”, “spontaneous reactions”, “hypoglycemia”, and “fragile spine”. Your wording will need to be tailored to your particular case, but these are examples of simply phrased alerts. •••
A tip for the public!
Mama took me to get some juice for her mod and I couldn't really focus 100% with all this nice cold tile! The lady even gave me a cookie- but mom said that I had to leave it.. Darn it! I did what she asked though. She kept putting it on my head and my nose which made it super hard! But I did it! She rewarded me with a nap on the cold floor while she chatted with the nice lady~ - bandana: Pinwheels - Use the code Mita10 to get 10% off your @harleyandme.az order! - ~17 months~ #australianshepherd #aussiesofaz #arizonaaussies #aussiesofinstagram #aussiesofig #australianshepherdsofinstagram #puppy #bluemerle #blazinsunhighhopes #servicedogintraining #servicedog #medicalalert #migrainealert #pots #posturalorthostatictachycardiasyndrome #psychiatricservicedog #cutie #blueeyes #arizona
You may have noticed that I got by Trinket over on my blog and wondered why. My real name is Kyrsten (pronounces Key-rsten) but no one ever pronounces it correctly. I have been called Kristen, Kristine, Kristy, Kyrsty... the list is never ending. So I am using a nickname that is easy to pronounce and was given to me by my grandpa!
This. Is. How. Service. Dogs. Are. Supposed. To. Behave. We went to get juice for my mod and Mita was wonderful. I think she only cared for the cold tile instead of me LMAO. We were offered some dog treats, which I accepted and used for training. I put this cookie everywhere. On her head, by her nose, on her paws- not a single sniff. She also remained calm when people began talking to her. Thanks @monsoonvapors for providing excellent juice, customer service, and an all around great relaxing lounge! Not to mention putting up with my training exercises for Mita hah - - Use the code Mita10 to get 10% off your @harleyandme.az order! - ~17 months~ #australianshepherd #aussiesofaz #arizonaaussies #aussiesofinstagram #aussiesofig #australianshepherdsofinstagram #puppy #bluemerle #blazinsunhighhopes #servicedogintraining #servicedog #medicalalert #migrainealert #pots #posturalorthostatictachycardiasyndrome #psychiatricservicedog #cutie #blueeyes #arizona
Whether you’re stuck in bed or running a marathon or going to an appointment or working a double shift or making sure you stay on top of your treatments or going skydiving–no matter what your day looks like on ANY day, you are enough, just as you are.
100% where i’m at with life right now😭 Trying to keep all of my conditions from flaring at the same time🤦🏻‍♀️🙄 #dysautonomia #gastroparesis #gjtube #mastcellactivationsyndrome #ehlersdanlossyndrome #servicedog #psoriaticarthritis #posturalorthostatictachycardiasyndrome #anaphylaxis #asthma
Still a few days left to register and vote! - This is a glimpse of what I’ve been working on and will be pitching next week at @denverstartupweek Pitch Competition. As part of the judging, 20% of scoring comes from public voting. - My goal is to someday offer medical grade compression that is specifically designed for people struggling with mobility, fatigue, or other disabling health conditions. - If you suffer from POTS Syndrome or any other type of chronic illness, I’d truly be grateful if you could take a few minutes and cast a vote for my submission by following the link in my bio.
To th CHILD who decided to tell my husband was leaving: I hope your happy. Not only did you put myself and my dogs in danger by telling him what you did you also DESTROYED my chances of getting out. You have successfully put me in a position where I will now have to endure emotional, verbal and economic abuse indefinitely. Friends don't tell a friends' abuser they're leaving. Grow up. ********************************************* Shop with the code TLP10 at @holdenscottsdoggear ! *************************************************#servicedog #servicedogstrong #bestfriend #bubbaslegacy #medicalalert #mentalillness #invisibleillness #dogtraining #dogsofinstagram #servicedogsofinstagram #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #akita #akitapuppy #americanakita #servicedogintraining #puppiesofinstagram
Hello friends long time no talk because I suck at social media and also because this last week has been a week from hell health wise. I guess I have a few updates? No port or picc right now, we decided it was a step that I’m not quite ready for right now. Instead, I’m back down to only one infusion a week and a new medication to hopefully give the same results as the extra infusions did, so far it hasn’t. From Saturday to yesterday I wasn’t tolerating food very well, was vomiting a lot, and was dehydrated. Thankfully my infusion helped with that, but my blood work showed that my vitamin and mineral levels were really low aaaand I’ve lost like eleven pounds in a week. So, my GI is doing an endoscopy next week because she’s worried I may have an ulcer. Womp, never a dull moment. I’m thankful I’m feeling a bit better today and have kept food down and I’m thankful my pain level is lower than usual today. This weekend is Meggie’s birthday and I’m ready to party 🎉 • • • • • • • #ehlersdanlos #ehlersdanlossyndrome #eds #heds #hypermobile #pots #potssyndrome #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #disability #disabilityblogger #disabledandcute #dysautonomia #zebra #spoonie #spoonielife #butyoudontlooksick #invisibleillness
💚🙏🏻🔥 He heals the brokenhearted and binds up their wounds. - Psalm 147:3 🔥🙏🏻💚
It's a rainy day, but I'm not complaining 😊 momma's been letting me snuggle with a stuffed animal and snooze in bed - Kida the Pampered Pooch . . . Kida has been doing super amazing at school! One of my classmates said she's the most well behaved service dog she's ever met and it made my day 😁 Kida's been getting breaks periodically throughout the school day where I let people pet her and learn about what she does. I'm super proud of my little kiddo! P.s. her Wonder Woman vest is almost done and it's pretty amazing 😜 . . . #leonberger #leonbergeroftheday #leonbergersofinsta #leonbergersofinstagram #leonbergergram #servicedogteam #servicedog #servicedogsofinstagram #servicedoglife #pots #posturalorthostatictachycardiasyndrome #potsie #chronicillness #gentlegiantoftheday #gentlegiantsofinstagram #gentlegiant #rainydays ☔️
These aren’t the best screen caps, I know. The full tumblr post is here: https://0deerling0.tumblr.com/post/178328550922/with-a-short-list-of-potential-issues-at-the And I’ll post the link in my bio too. It’s just a quick study on one aspect of saddleseat that I just can’t get around, even if the rest has been fixed. — #saddleseat #horsetack #saddlefit#cripplepunk #chronicillness #chronicillnesswarrior #pots #posturalorthostatictachycardiasyndrome #chronicpain #disabledequestrian #chronicallyillequestrian #equestrian #dressage #equestrianscience #eqscience #equestriansciencemajor #eqsciencemajor #socialworkmajor #paraequestrian
Alright homies, Cleavland Clinic is in 3 days!!! I'm going to start of the morning with an EKG, then I get to see the doctor that specializes in POTS, and then I'll have my very first tilt table test! A tilt table test is exactly what it sounds like, they strap you to a table and tilt the table up and down so your body goes from laying down, to standing up. While they tilt the table, they take your orthostatics (your blood pressure and heart rate as you lay and stand). I've only had my orthostatics taken when I'm laying down, sitting up, and then standing on my own. That's how I was diagnosed. But I've never actually been strapped to a table before! I'm not allowed to eat or drink for 4 hours before the test and they said I would be unable to drive for the rest of the day after the test is done. I'm a little nervous for it. And I'll know how many days I have to stay at the cleavland clinic after the first day is over. But I'm hoping to get some answers!
Fall starts TOMORROW!!! 🤗🍂🧡🍁🎃👻 • • • I absolutely LOVE fall in New England!! 🤗❤️ #justsayin I could NEVER live somewhere without all 4 seasons 😂 I see a lot of cider donuts, apple picking, corn mazing (yes, made that a verb 😏), pumpkin carving, boots and JEANS in my future 🔮🙃🍁🙌🏽✨👖👢 • • • Tbh jeans have always been my nemesis.... how TF does anyone find them comfortable?!?! 🤔 #thunderthighproblems 🙄 there’s no denying my legs are my “problem area”... BUT with consistency and MF HARD work, I’m finally seeing them transform before my eyes! 🤪 • • • I want you to feel confident AF slipping on those jeans this fall boo!! And still be able to eat all the donuts you want 😍🍩 (moderation is key DUH). • • Jeans Don’t Lie October accountability group starts October 1!! 🙊Just 10 spots girlies ... Link in bio or DM me! 🤗👭❤️📲✨
Day 264: 21/09/18 #photoaday • • Oh look another selfie two days in a row 🙋🏻‍♀️ So pleased the weather is cool enough again to get out my fave jacket, the sherpa lining is the definition of comfort. Went to freshers fair for a bit this morning but didn’t stay long as I lost my friends and once you lose someone at freshers fair it’s almost guaranteed you won’t find them again 😂 I also got a bit tired of being bombarded with stuff, even though it was free most of it was complete rubbish. Trying to not accumulate so much stuff now 💆🏻‍♀️ Spent the afternoon on more brownie admin, and carried on sorting out my piles of medical paperwork. Got a completely free weekend now so gunna catch up on some rest 😴 #ootd #studentlife #lifestyleblogger #ehlersdanlossyndrome #EDS #connectivetissuedisorder #raredisease #posturalorthostatictachycardiasyndrome #POTS #chronicillness #chronicfatigue #chronicpain #chronicillnessblogger #disabilityblogger
God says don’t give up! Keep trusting in Him! 🙏🏼❤️☺️#potsawareness #potssyndrome #posturalorthostatictachycardiasyndrome #godheals #chronicillness #dysautonomia
With #potssyndrome #dysautonomia your heart rate is all over the place. This was taken on a good day. My heart rate can jump up more than 30 beats per min from my resting heart rate, from even the slightest change of position in bed. The normal range for your heart rate is 60-100. #potssyndrome #posturalorthostatictachycardiasyndrome #potsawareness #chronicillness #health #cardiacnurse #myheart #godheals #byhisstripesweare #pulseoximeter
First day back at it 👊 Its been well over a week since ive been able to do anything more than make a slice of toast and have a shower. In saying that, im still not 100% so an easy yoga routine is all ill be doing until i completely kick this cold. Remember, anything is better than nothing and after being stuck in bed for so long, it felt great to just have a really good stretch! • • • #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome   #zebrastrong #sicktofit #spoonie #mcas #mastcellactivationsyndrome #spinalinjury #invisibleillness #chronicillness #mentalillness #mentalhealth #mentalhealthawareness #ptsd #depression #anxiety #yoga #motivation
Feel like I might end up crashing early tonight. That oil makes me SO tired. Plus I am just extra tired in general from trying to train my body to get up earlier. Ideally I would like to get up at 7:30AM like I used to for work. Not for any particular reason or anything, but maybe if I get up earlier I can have time to actually do things like read and catch up on YouTube videos I need to watch and such. Cause as of today I get up at 9:00AM and I am just dead and ready to go to sleep at 7:30PM on days when I don't take my oil. A thought I had was that I could take my oil early and nap around 10:30AM and then I won't be so sleepy later in the day. Daisy Mae echoes this sentiment and is already curled up next to me dozed off. I am watching a DVR'd episode of Naked and Afraid and relaxing. - - - ❤Tags❤ #daisymaetherattie #daisymae #daisy #servicedog #servicedogintraining #sdit #dogsofinstagram #doggo #ratterrier #rattie #1year11months #sd #psychiatricservicedog #medicalalertservicedog   #chronicallyill #chronicallyillwarrior #chronicillnesswarrior #spoonie #spoons #spoontheory #pots #posturalorthostatictachycardiasyndrome #potsie #potssyndrome #anxiety #SeronegativeRheumatoidArthritis - - - 🎸Want a discount on gear?🎸 - Use code PICKLES20 at Goat Dog Gear (check out their Facebook and @goatdog_sdit for more information) to get 20% off your custom order! Does NOT apply to Goat Crates or premade orders! - - - 🐶Pawtners🐶 @goatdog_sdit @chief_the_pom @the_canine_duo @service.princess @littleredservicedog @service.dog.ollie @_who_rescued_who_ @aurora_theservicepoodle @bear_the_sdit - Wanna be a Pawtner? DM us!
Sorry about video quality, I had to download it off Facebook. We've been working on Jupiters gear shyness lately and he's come so far. He loves to work but hates anything on his back and having to stick his head through things. This is such an improvement compared to how he used to be about harnesses/vests. Follow my pawtners! @joy_and_alex @service_dog_mila @khaleesirichards @service_labrador @hero_gsd_sdit #husky #huskies #huskiesofig #huskiesofinsta #huskiesofinstagram #dog #dogs #dogsofig #dogsofinsta #dogsofinstagram #puppy #puppies #puppiesofig #puppiesofinsta #puppiesofinstagram #sd #servicedog #servicedogsofig #huskysd #sdit #huskysdit #POTS #posturalorthostatictachycardiasyndrome #medicalalert #syncope #bipolardisorder #CFS #fibromyalgia #fibro #syncope
I’m enjoying our new (to us) couch! I’ve had quite a week! Terrible back pain since Wednesday. PMSing. IBS hell. New medicine not working. Today I went with my family to see my grandma, get the couch from her, and go out to eat. I had to take a lot of medicine, bring my heating pad with me, and of course use a wheelchair to make it, but I was still struggling. Now that I’m home, the pain is really bad. I’m still going back and forth on whether or not we have to cancel our local comic con trip in two weeks because my health is doing so bad. . . . #spoonieproblems #spoonielife #spoonieselfie #selfie #spoonie #chronicillness #chronicillnesslife #chronicillnesswarrior #spooniewarrior #chronicallyill #disabled #disabledandcute #chronicallyfabulous #dysautonomia #potsie #posturalorthostatictachycardiasyndrome #pots #chronicpain #chronicpainwarrior #ibs #irritablebowelsyndrome #smallfiberneuropathy #wheelchairuser #chronicfatigue #fatigue #neurocardiogenicsyncope #migraines #dysautonomiawarrior #chronicillnessproblems #invisibleillness
Welcoming in #fall with some beautiful #flowers ✨ also making a special #mabon meal tonight for #dinner , pics to come later 😋 so excited that #autumn is finally here, my favorite time of year for sure 💖 thankfully no more heat fucking with my BP and HR 😜 #spoonie #chronicpain #chronicillness #chronicillnesswarrior #chronicpainwarrior #invisibleillness #chronicfatigue #chronicfatiguesyndrome #potssyndrome #posturalorthostatictachycardiasyndrome #disability #disabled #spoonielife #butyoudontlooksick #trans #lgbt #lgbtq #nonbinary #enby #ftm #depression #anxiety #ocd #cptsd #ednos
Dear feeding tube, I never wanted you. At first, I was convinced you were going to ruin my life. That first week we were together was absolute hell, and I thought I was right. You were a mistake, and I hated you. Then I started to get to know you. Slowly, you began to change my mind. Maybe this arrangement wasn’t so horrible after all. I learned your quirks, I cared for you every day, and you quickly integrated yourself into my routine and my life. I realized that you were helping me too. Feeding my body the nutrition it so desperately needed and that my stomach so traitorously rejected. I began to feel better, stronger - and I knew it was because of you. The day you became a button, my love for you grew. You were no longer uncomfortable, unwieldy, and unfashionable, and you became more a part of me than ever before. You are, dare I say, cute. Advocating for you was worth it. Today, you’re so normal and natural and part of me that I can hardly imagine my stomach without a tube through it. You've given me my life back and helped me live it. If a feeding tube is the price of life, I’ll gladly pay it. You changed everything I thought I knew about feeding tubes and the people who have them. I know If I could go back, there is little I would change. I still don’t want you, but I’m so, so thankful for you. Happy One Year Tubeiversary, little friend.
105- Energy 💪 I am incredibly grateful for the energy I’ve had since I got my stem cell treatment. I’ve been taking fewer naps and actually have the desire to go out and adventure. While my other symptoms are still at an all time high, I’m so grateful to be able to have enough energy to participate in things despite! (And I’m stoked to be able to see Disneyland during Halloween time, it’s my favourite!! 🎃🎃) #attitudeofgratitude #100daysofgratitude • • • #lymedisease #lymewarrior #lyme #lymedontkillmyvibe #pots #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #chronicfatigue #myalgicencephalomyelitis #ptsd #mentalhealth #mentalhealthawareness #gratitude #gratitudeeverydamnday #stemcelltransplant #spoonie
CBD Cream for bone, joint, and muscle aches ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Cannabinoid oil is extracted from the least processed form of cannabis plants called “hemp” and provide non-psychoactive (meaning you do NOT get that high feeling associated with THC) relief for numerous anxiety disorders, insomnia, chronic pain and inflammation, nausea, migraines, irritable bowl disorders, chronic autoimmune disorders, protection from neurodegenerative diseases, infections, epilepsy, skin irritations, mood, reproductive health, temperature regulation, and more. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ CBD Cream is a topical alternative to CBD Oil. You can use it on your bones, joints, and muscles to decrease aches and pains, inflammation, discomfort stemming from arthritis flare ups, and skin conditions such as eczema! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ There are many different CBD brands that use varying levels of CBD and other cannabinoids — Full spectrum and CBD isolate! They come in oil, topical cream, capsules, and gummies/food. Talk with your medical provider, test different products, and find what works for you! 🌞🌿 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #CBD #CBDOil #CBDCream #CBDAwareness #Cannabinoids #Hemp #RemediPlus #EndocannabinoidSystem #Endocannabinoid #POTsSyndrome #PosturalOrthostaticTachycardiaSyndrome #POTsAwareness #Dysautonomia
Nodens took on his first concert! We saw Celtic Thunder. He very well! He was a little overwhelmed at first, so many people in a small area and a lot of them had no idea what personal space was or that Nodens and Sebastian were not there for them. He still tasked like a champ. #servicedogintraining #servicedogtraining #servicepuppy #servicepuppyintraining #tasktrained #cardiacalertdog #narcolepsy #chronicmigrains #migrainalerdog #migrainalertsetvicedog #migrainalert #migrains #fibromyalgia #POTS #posturalorthostatictachycardiasyndrome #sheltertohelper #cardiacalert #cardiacalertservicedog #UCTD #connectivetissuedisease #sheltertohelper
I’ve gotten a lot of messages about how Vick (my partner of 3 years) and I keep our relationship strong, manage flares + maintain intimacy. Neither of us will sit here and tell you it’s easy to maintain a healthy, loving relationship, but we will tell you that when you do put in the work it’s worth it. So we’ve complied our top tips for keeping the love strong through the toughest of times: 1️⃣Accept each other weaknesses and celebrate each other strengths. Disabled or not, we all have strengths and weaknesses, and in a relationship, knowing these qualities & knowing when to use them to your benefit is important. 2️⃣Make time for each other, as a couple, at least every week. Life undoubtedly gets busy, with school, work, family, doctor appointments, etc. Set aside time to send focused on each other, even if its just an hour. 3️⃣If something is wrong, talk about it. Express yourself calmly and rationally. And if your partner has something to say, use active listening skills so they feel heard. If you’re heated in an argument, it’s okay to step away, calm down and then come back to talk & 2 tips for maintaining intimacy 1️⃣Intimacy doesn’t always equal sex. As I’m learning in my sexuality class, intimacy can including kissing, massages, and touching sensitive part’s of your partners body like their neck, elbows, knees, etc 2️⃣Explore and understand your own body. As a person with a disability (mental or physical), your body might feel, look or operate differently than the typical person. This is O K A Y. Learning your own body will help your partner know what to do There’s no doubt that maintaining a strong, healthy relationship with a chronic illness is more difficult. But my disability doesn’t, and shouldn’t, hold me back from finding love (Watch out for a post tomorrow written by Victoria on her perspective on dating someone with a chronic illness) • • • • • ID: there are five selfies of Victoria and Natalie in various locations (the car, Disneyland, a forest, pride festival, and overlooking a city).
Today's Pros: •My @vixen_by_micheline_pitt order arrived today and I am so excited to wear it! •Rasta decided she wanted to come out of her cage and hang out! So I got some much needed bird snuggles. ••• Today's Cons: •Woke up late with super still joints. •While getting ready to leave the house I put on lotion I dont normally use and it immediately triggered my asthma. I washed it off and now everywhere I touched on my face/neck itches. ••• Its been a 50/50 day so lets hope dinner goes smoothly. Edit: it did not lmao . . . #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #invisibleillness #butyoudontlooksick #pots #potsie #dysautonomia #spoonie #chronicillnesswarrior #peoplehopetribe #gastroparesis #chronicpain #chronicfatigue #chronicallyfabulous #chronicloveclub #allergies #anaphylaxis
Tucking under the table at Wendy’s
Practicing down at a distance at Ryan’s
Good girly focusing on me while at Ryan’s
I got out of the house today! I had two goals for myself: buy some yarn for a knitting project, and do my PT. But I got to do even more than that! Mom and I went out to lunch and walked around downtown, bought a ton of gorgeous yarn, and stopped for the world’s most decadent chocolate sorbet. I felt very POTSy the whole time, especially out in the hot sun, but I stuck it out because I was having so much fun. Next up: knitting and PT in the air conditioning. • Does anybody else with POTS get visual disturbances? When I’m flaring looking at anything in motion my vision becomes very choppy and it makes me super dizzy. I couldn’t watch the guy spooling my yarn because I thought the wheel was going to make me pass out. Very strange! 🤪 • • • [image description: Eliza is smiling at the camera holding a cup of dark chocolate sorbet.] • #ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
Quick health update. Went to see my as primary doctor. My heart has been really struggling today. At the doctors my heart rate and my blood pressure were both high even with taking my medicine. My doctor is also concerned with my weight loss since last visit. She is checking in on my genetics referral and also referring me to a new rhuemotologist, gastroenterologist, and a orthopedic surgeon. And so the journey continues... #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #migraine #mitralvalveprolapse #raynauds #chronicillness #spoonies #butyoudontlooksick #ehlersdanlos #eds #pots #spooniestrong #chronicpain #invisibleillness
Blooding pooling in my feet much? My heart has been really struggling today. At the doctors my heart rate and my blood pressure were both high even with taking my medicine. My doctor is also concerned with my weight loss since last visit. She is checking in on my genetics referral and also referring me to a new rhuemotologist, gastroenterologist, and a orthopedic surgeon. And so the journey continues... #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #migraine #mitralvalveprolapse #raynauds #chronicillness #spoonies #butyoudontlooksick #ehlersdanlos #eds #pots #spooniestrong #chronicpain #invisibleillness
I am finally gaining weight! I am SO happy! For the last couple of weeks I have only vomited twice! So I can finally eat more, drink more and start exercising so I can get some muscles again! It might take a long time to reach my goal, but I know that some day I will get there!😄 #posturalorthostatictachycardiasyndrome #invisibleillness #chronicillness #pots #dysautonomia
The impossible happened! Me and @stellajane18 are worn out. Guess that’s what happens after 3 days of nonstop fun 😝 now i’ll be all rested and ready to play when mommy picks me up tonight! And she thought I’d be worn out and ready to cuddle 😝 #energizerbunny #seeyousoonmommy donnertheservicedog #servicedog #servicedogintraining #dogstagram #dogsofinstagram #puppiesofinstagram #mobilitydog #labradorretriever #labsofinstagram #dysautonomia #posturalorthostatictachycardiasyndrome #neurocardiogenicsyncope #depression #anxiety #invisibleillness
🌟New Video!🌟 Today's video is all about POTS (Postural Orthostatic Tachycardia Syndrome). Head to my channel to learn a bit about the symptoms, science, and some tips for managing it. 💜🥄 Channel link in bio 🥄💜 . . #pots #posturalorthostatictachycardiasyndrome #potsie #selfcare #spoonie #spoonielife #chronicillness #EhlersDanlosSyndrome #mcas #mcad #eds #mastcellactivationdisorder #mastcellactivationsyndrome #zebrastrong #disgaybled #disability #disabledandcute #ehlersdanlos
Today I had my infusion at the Hospital in NH. They are all so nice in this department. The nurse’s niece happened to be married to one of my brothers really good friends. The nurse also used to be a dancer like me and used to live in Alaska like my parents. Super small world! Sadly she wasn’t great at putting the IV in and my arm is feeling pretty battered. After the IV, we used my boost to go back to my favorite bookstore, where I got this cute pic of my parents looking at books. The last picture was from my adventure yesterday.... My mom snapped this pic of me surrounded by ducks. I’ve been severely symptomatic the last few days, but I’m grateful for the support I have and the ability to have two very short, but sweet adventures. #ivinfusion #babewithamobilityaid #wheelchairlife #spoonie #spooniewarrior #spooniestrong #spoonielife #spoonieadventures #zebra #zebrastrong #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #potsie #potsiestrong #potsiegirl #chronicillness #myalgicencephalomyelitis #chronicfatiguesyndrome #gastroparesis #degenerativediscdisease #chronicpain #pwme #vogmask #vogmask_usa
Came home to package that I did not expect for weeks from @happypackageproject. Okay so first I want to say- it was more then I ever expected. OMG the elephant bracelet made me tear (literally) 🐘 because they are one of 3 of my favorite animals and it’s black. If you know me. Black is my color all the way. And why do I love how heavy it is ? lol not sure but I do...if I ever pick an actual brighter color. It’s coral and yellow all the way and OMG the paper the wrapped it all was perfect. Everything was great. Like I am am already wearing the childhood cancer awareness bracelet already. My stones are already in my mediation room. Thank you so much for this amazing package 💕 . . #chronicillness #invisibledisability #disability #disabled #restlesslegsyndrome #awareness #raredisease #chronicfatigue #zebrastrong #chronicpain #disabilityawareness #mayoclinic #panicattacks #superventriculartachycardia #svt #Neurocardiogenicsyncope #ncs #narcolepsy #posturalorthostatictachycardiasyndrome #POTS #fybromyalgia #chronicillnesswarrior #spoonie #dysautonomia #servicedog #servicedoghandler #mastcellactivationsyndrome #mcas #patellafemoralsyndrome #rarediseases
For some people having a feeding tube would mean it’s the end of their lives; for me it’s just the beginning
Meeting some friends at Ryan’s Pet Supply to get some things we need, train for a bit, and then go eat some lunch together! Should be lots of fun!
This morning, before having a relapse, my Wonderful friend managed to take some publicity shots for my singing “gigs”...he’s actually made me look half normal, and I’m eternally grateful and blessed to have such a wonderful friend #posturalorthostatictachycardiasyndrome #potssyndrome #invisibleillness #spoonieproblems #potsie #singer #friend #crapmodel #patience
October is Dysautonomia Awareness Month. #posturalorthostatictachycardiasyndrome #pots #dysautonomia Links in bio. Dysautonomia is an umbrella term for a group of conditions that affect the autonomic nervous system. The autonomic nervous system controls most of the body's automatic functions like heart rate, blood pressure, pupil dilation, body temperature, and digestion. People with dysautonomia can't control one or more of these functions. Postural Orthostatic Tachycardia Syndrome, or POTS, is one of the most common types of dysautonomia. It is estimated that POTS affects between 1 million and 3 million in the United States, plus millions more world wideand that is just one of the many types of dysautonomia! Dysautonomia is NOT rare, just rarely heard of, let's change that! Raise Awareness!
Not feeling good today. I am trying to get everything set up for infusions. It has been a back and forth between my doctor's office and the infusion center for the last month. I am just trying my best to get help. I am being the best advocate that I can be. I am tired and depressed but I keep pushing. #chronicillness #chronicpain #chronicmigraines #chronicillnesswarrior #spoonie #painday #migraines #infusions #dysautonomia #POTS #posturalorthostatictachycardiasyndrome #nausea #trigminalneurlagia #fibromyalgia #tired
I am gonna be so stylin this fall. I pick all of them to wear today. WHAT DO YOU MEAN I CANT WEAR 4 AT ONCE, MOM? Ugh. They match my vest though. We LOVE @luckystarbandanas ! • • • • • #goldenretriever #goldens #goldenretrievers #goldenretrieverlove #servicedogintraining #medicalalertservicedog #cardiacalert #servicedog #spoonie #cardiacalertdog #Dysautonomia #POTS #posturalorthostatictachycardiasyndrome #EDS #ehlersdanlossyndrome #goldenoftheday #sadiehawkinstheSD #
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