#posturalorthostatictachycardiasyndrome

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Second video is Dakota in a down stay under a bridge (very loud and unusual to him) and the last is him doing a fake alert and being very persistent about it. Since he is most likely going to school with me in the next week or two, I’m very happy about this. - Follow my pawtners! @percy.sdit @sditkoda @servicedogscout - - #sdit #servicedogintraining #servicedog #sdteam #medicalalertdog #psychiatricservicedog #potssyndrome #posturalorthostatictachycardiasyndrome #chronicmigraines #hemiplegicmigraines #chronicallyill #chronicillness #chronicillnesswarrior #chronicillnessfighter #sensoryprocessingdisorder #panicdisorder #chocolatelab #dog #labs #spoonie #potsie #fibromyalgia
***🚨GIVEAWAY ALERT🚨*** I’m so excited to be able to support one of you like all of you have supported me since I started this account 💚 Included: - 5 Facemasks - 6 Non-toxic vegan bath bombs - Calendula oil: this oil is an anti-inflammatory and anti-microbial blend for your face and body made by @seasonallymeboise. - Anti-Inflammatory oxymel herbal tincture by @bigbrightcircle. - Lyme don’t kill my vibe shirt by @mellypeacox. ▪️ ***To enter: like this post, follow my account, @bigbrightcircle and @seasonallymeboise. Tag friends in the comments (two tags per comment). Each comment counts as a separate entry! Giveaway winner will be announced on Wednesday! Get at em!!!! 💛💛💛. ▪️ And of course thank you to the 3 wonderful humans who donated to help make this possible 😊♥️ If you’re not a Lyme person and don’t think you’d wear the shirt, a second winner will be chosen to receive that!
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Wee snap from Maya's special birthday day out today! We visited two castles and an abbey and she had a fantastic time, she loves exploring all the nooks and crannies of the ruins and clambering up and down everywhere 😊 I woke up feeling awful but was determined to go out and enjoy our day out. Sadly I felt progressively more and more ill throughout the day with either a cold or my M.E playing tricks on me. Also had a really bad headache building all day and now I think it's in the mild migraine category and has made me boke already. Plus my POTS is flaring with the heat and my period started yday...so to be perfectly honest I feel like absolute 💩 Crawled into bed as soon as we got home but so glad to have gotten out with Ed and Moo today, I love our wee family days out. Really hoping for a bit of an improvement in health next week. Sorry I'm not v active on here atm, bear with me and I'll be back to posting normally soon. Have a fab weekend lovelies, hope you can enjoy the weather 😘 #birthdaygirl #wanderlust #bedlingtonwhippet #lurcher #lurchersofinstagram #scruffydog #cute #blonde #wavyhair
🎉 Fun announcement! 🎉 Erik and I have decided to do the @greatstrides.cf walk in Worcester, MA this year! I have been a follower of the @freyliving for about 3 years at this point, and Erik has recently began following them too. I found The Frey Life right at the after my Gastroparesis diagnosis, and I was struggling to find purpose and happiness in my life post-diagnosis. Mary and Peter were huge factors in helping me to thrive with chronic illness. I am forever thankful for them, and I’m now soooo excited to finally meet them in person. So, if any of you are going to the Worcester CF Walk, let me know, and maybe we can meet up ☺️ We will also be going to Boston for a few days after the walk (5/20-5/21) , so if anyone is in Boston, we would love to meet up. 🙌 Who do you follow on YouTube? Let me know in the comments 👇👇👇
Look what Gnar learned today!! He's been learning how to close doors and cabinets, and how to push wheelchair buttons, but tug is a brand new command for him! This will be a very important command for Gnar. It's the basis for helping me get undressed, pulling laundry baskets, bringing my wheelchair or rollator, and opening/holding doors and cabinets! He learns ridiculously fast, but as you can see in the second blooper video, he's still a puppy, not a robot 😂 Gnar is learning a ton of commands, but even more importantly, he is learning to be confident, generalize, and problem solve! I want him to be able to eventually read a situation and task independently without needing constant commands. Some dogs do really well with that, while others take some time. Gnar is a soft dog and needs lots of encouragement and direction right now, but he's quickly learning what he needs to do and is already starting to become more confident in himself and in me as his partner. While having dogs to respond naturally is great, it's still important to remember that in order be protected by the ADA, our service dogs must have trained tasks! I'm so excited to continue training and working together as a team ❤️ when I have the energy, Im hoping to make several videos showing each of his commands and compile them into a highlight at the top of our page so I can track his progress a bit easier 😂 ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #servicelegendgnar #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
I went to the Albert Hall last night to see Chas n Dave! Another one off my bucket list of gigs I want to go to, and I’m so happy because I only had one PoTs attack and I was able to have a little drink too (I know I shouldn’t but I was sat down and it tasted good). Such a wonderful evening with Mum and Dad. I love music so much and it really is my saviour on a daily basis. I am absolutely paying for it today though and I can’t move but later I might try and do a face mask and get some more sleep! . . . #pots #potssyndrome #posturalorthostatictachycardiasyndrome #dysautonomiaawareness #dysautonomia #dysautonomiasucks #mirgraine #migraines #migraineawareness #eds #edstype3 #ehlersdanlossyndrome #ehlersdanlos #connectivetissue #geneticillness #butyoudontlooksick #spoonie #spoonielife #tired #showering #triptans #morethanaheadache #spine #parsdefect #osteoarthritis #fragileskin #spoonie #spoonielife
Check out our new blog post about the importance of breakfast {link in bio}! We both struggle with getting food in us first thing in the morning (sometimes it's the LAST thing we want to do) but we notice we usually feel a lot better during the day if we start the morning off eating right 💪🏻
Hey guys! 🤗 I took a little break from Instagram with all the craziness I’ve had going on. I’m back home now and actually got back to Ohio last weekend, but I’m surely missing my mama already. Here are a few pictures from my time there. Things have been crazy busy and emotional with my great grandmas passing, but I’ve been pushing through and hanging in there! I’ll try to get you all better up-to-date with my posts over the next few days. Thanks for your continued support and encouragement through everything. Love to all of you. 😘❤️ [Image Description: 1. Mahala smiling in neck brace, camo tank top, and sunglasses sitting beside her mom who’s smiling in a pink shirt with similar sunglasses. 2. Mahala’s mom, Mahala, Mahala’s step-sister, and Mahala’s step-dad standing and smiling at the camera. 3. Same people, different order, smiling at the camera. 4. Road showing mountain range in the distance.) #mama #bestfriend #bestfriendsforever #family #familytime #familygoals #tennessee #blendedfamily #spoonie #spoonielife #mother #home #sunglasses #twinning #chronicillness #chronicpain #chronicallyill #disabledandcute #chronicallyfabulous #disability #eds #ehlersdanlossyndrome #zebrastrong #potsie #posturalorthostatictachycardiasyndrome #tattoo #blessed #grateful #choosejoy
So a little update. Yesterday I had my first appointment with a gi doctor. He strongly suspects I have spastic colon otherwise more commonly known as ibs. They’re gonna have to do an upper endoscopy to try to figure out why I’m having such terrible acid reflux which I’m really scared about 😂 so that’ll probably be coming up within the next week or two. Have any of you had endoscopies? And if you did did you feel anyone or remember anything 😅
Whoa. I see why so many of my Dysautonomia friends keep these chips on hand. A handful of these and I’m feeling back to “normal”. 😂 I’m at an outdoors event today so I grabbed these for a quick salt dose. highsaltdiet #dysautonomia #potsyproblems #posturalorthostatictachycardiasyndrome
(old pic) Jupiter did amazing last night. An arcade has an event last night and we took the dogs to desensitize them. Jupiter blew me away. He wasn't fazed at all by the lights and the noises. The music was so loud it made the walls vibrate but he didn't care at all. We didn't spend much time in there as me and another person were having sensory issues with everything going on, but Jupiter tasked while I was in there. He also got pet by a toddler for a couple seconds on his hips and didn't react. (The parents did grab the child and apologized) Follow my pawtners! @joy_and_alex @service_dog_mila @khaleesirichards @spoonie_kid @service_labrador @corkyopup @service_unicorn_nakita @the.service.droid Looking for a new bandana? Check out @lankydogco and use my code "SDjupiter10" for 10% off! #husky #huskies #huskiesofig #huskiesofinsta #huskiesofinstagram #dog #dogs #dogsofig #dogsofinsta #dogsofinstagram #puppy #puppies #puppiesofig #puppiesofinsta #puppiesofinstagram #sd #sdteam #servicedog #servicedogsofig #huskysd #intraining #sdit #huskysdit #POTS #posturalorthostatictachycardiasyndrome #medicalalert #balancedtraining #syncope #bipolardisorder
We are the kind of people who keep going despite feeling completely broken and tears streaming down our face. Giving up isn't an option. I honestly have come to grips with the reality of death. I care little if I survive. But I want to LIVE. #struggle #chronicillness #chronicpain #ill #illness #pots   #posturalorthostatictachycardiasyndrome #disautonomia #puddingblood #medical #potsinternational #potssyndrome #inspiration #inspire #inspirational #passingout #migraines #heartpain #headaches #hydrate #healthy #dizzy #awareness #spoons #spoon #spoonie   #spoonielife
Sooo much hair 🤗❤️ So today I’ve tidied the flat, been to the garden centre and done my first bit of kitchen top gardening 🤫🌷🍏🌸 and now Nanny and Grampy are going to come visit! My health has been a bit better this week but I’ve got myself into a bit of a shit patch atm in general and my tube is worse than ever so I’m going in to hospital 🏩 at some point early next week to see the team and hopefully get things moving! #praisethelord ❕ I do absolutely love love love living on my own but the constant anxiety of worrying how my health is going to affect things is difficult and so is doing grown up things but it’s life and it’s what I want to do so I’m going to give it my all and enjoy it ⭐️🏡🌈 #chronicillness #posturalorthostatictachycardiasyndrome #gastroparesis #tubie #pegj #fibromyalgia #ehlersdanlossyndrome #type3 #hypermobile #redhairdontcare #homealone #productivity #family #myfabulouslife
My right hand, now all normal. My left hand is pale and cold lol. And to think that my left hand was my “good” side... #thoracicoutletsyndrome #potsawareness #posturalorthostatictachycardiasyndrome #orangensw #pain
It’s the @throughthefibrofog one year anniversary! Well it was three days ago but I just realised last night. So a photo of flowers to celebrate 🎉 🌹 🎊. Thank you to everyone who follows this account and enjoys the content. I am really overwhelmed by how many of you there are! I’ve had amazing conversations with lots you that have been so supportive and helpful. I hope that you keep enjoying my little ramblings about chronic illness and the things I am dealing with - good and not-so-good. And please do keep contributing your views and experiences when we talk about a particular topic - I know it helps me so hopefully it helps others as well. And finally, please do let me know if there are any posts you would like to see either here or on the blog (link in bio). Have a lovely weekend! . #fibromyalgia #fibro #pots #posturalorthostatictachycardiasyndrome #eds #dysautonomia #ehlersdanlossyndrome #ehlersdanlos #hypermobility #migraine #headache #vertigo #vestibularmigraine #mcas #mcad #mastcellactivationsyndrome #raynauds #interstitialcystitis #tmj #chronicillness #chronicpain #chronicfatigue #spoonie #disability #health #wellbeing #wellness #flowers #nature
honestly i just post these cat memes now😂 how are you all? i hope you had a fun and safe 4/20, and a good day if you weren't celebrating! my school did a walkout to support gun violence prevention, and to protest the mass/school shootings happening. it was very powerful, and i'm proud to have been apart of it. • 《 #chronicillness #chronicallyill #invisibleillness #chronicillnessmemes #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #spoonie #zebra #potsie #ibs #irritablebowelsyndrome #gerd #sibo #asthma #allergies #anxiety
So very proud of my boy tonight. He does alert to my dysautonomia and suspected absence seizures. But tonight he alerted to a friends seizure in the middle of a CGC testing. Her service dog was in another room. So very proud of him. - - Check out our pawtners 🐶🐕🐾 @fantastic_fin_fry @hearingdoghanalei @cai.the.service.saviour - - - - #chronicillnesses #chronicillnesswarrior #servicedogteam #respectthevest #medicalalertdog #posturalorthostatictachycardiasyndrome #POTSieSTRONG #dysautonomia #chiarimalformation #chronicpain #chronicfatigue #traumaticbraininjury #ehlersdanlossyndrome #eds #zebrastrong #ComplexPTSD #mastcellactivationdisorder #connectivetissuedisorder #goldenretrieversofinstagram #goldenretrieverservicedog
Does anyone one else have a severe fear of saying “oh, my SD does that while working!” Or “These videos help me with my SDiT’s training!” Or something along those lines to non SD related accounts (on any social media)? I’m scared to do this invade someone looks up what I’m talking about and see’s all the registration kits or looks at the law and passes their pet off because of the loop holes. Don’t get me wrong I do educate and advocate for service dogs and mini horses in the US but I’m scared that I’ll create fakes with comments. Maybe it’s a paranoia thing? Maybe I’m just being an SD handler who’s scared of fakes... 🥄 🥄 🥄 🥄 Visit my Pawtner! 🐾 @sammy.the.service.dog 🥄 🥄 🥄 Do you want Tower to model clothes/gear or test a product? Dm us to set it up! 🥄 🥄 🥄 Want to see more of Tower? Link tree in my bio! 🥄 🥄 🥄 🔲TAGS🔲 #servicedog #servicedoghandler #servicedogteam #potssyndrome #posturalorthostatictachycardiasyndrome #ptsd #anxiety #bipolardepression #mobilityservicedog #psychiatricservicedog #ptsdservicedog #tasktrained #chronicillness #🥄 #invisibleillness #dogsofinstagram #dogsofinsta #dogmodelsearch #spoonie #dogsofmissouri #goodboy 🐶 #workingdog #respectthevest #dogmodelsearch #canecorso #canecorsoitaliano #furbaby #paranoid #fakeservicedog
My names Erica and I’m from South Australia! I’ve had my heart stolen by a handsome man I met 2 years ago and he continues to support and love me no matter what @4alex442 I love animals, especially the furry and fluffy ones! I’ll go to shelters to cuddle the animals and to the zoo with my man every few weeks 🙈 My boyfriend introduced me to cars and I now love them and enjoy going to car shows and meets with him. I own a bright pink Toyota celica and I love her, she has princess airbrushed onto the left headlight 👑 Anyone who knows me would call me a hippie 🌻 I have an art hobby which is playing with resin and I have started an account up to try and sell my pieces- @red_resin_crafts I want to become a nurse when I’m healthy enough to take up study again as my illnesses have made me unable to study. I did complete a cert 3 I’m assistant nursing though 😊 #disabilityninjas #disabilityninjasphotochallenge #gettoknowme #animal #artist #chronicillness #invisibleillness #chronicmigraines #pots #posturalorthostatictachycardiasyndrome #fibromyalgia #ibs #ibd #eds #ehlersdanlossyndrome #photochallenge #illness #health #chronicallyill #disabledandcute #disabled #chronicpain #chronicpainwarrior
Throwback to the NG tube that ultimately failed.. . After 3 days in the hospital I’m going home tomorrow morning. Im still in an immense amount of pain, but I’m excited to go home. I keep accidentally dropping my phone on my belly button and it is so painful. For those who don’t know how GJ surgery goes, my surgeon cut into my belly button 🤦🏻‍♀️
PTSD, then. now. time does not heal all wounds, what you do in that time does. if you are hurting, its not your fault, you deserve to heal and it gets better. #ptsd #ptsdrecovery #healing #ibelieveyou #chronicillness #eds #ehlersdanlossyndrome #hypermobility #pots #posturalorthostatictachycardiasyndrome #findingcalminchaos
I love this stuff cuz I can add it to whatever I want. I react to gator aid, propell, anything that is a fake flavor, and stevia. So much stuff with stevia in it. 😭 But what works for me may not work for others. #pots #posturalorthostatictachycardiasyndrome
Last week I was hospitalized with debilitating heart pain so severe I could not speak, walk, or be in the light. Last week the paramedics mocked the name of my illness POTS, “how could an illness with that name be serious?” Last week I was refused pain medication and IV fluids for 4 hours despite my spasms, shaking, and crying. Last week my nurse would not look at my medical id, despite my complex medical history, because she didn’t think it was necessary. Last week I was told by the ER doctor that “it’s just anxiety” and that because of my demographic as a 22 year old healthy looking woman, I have nothing to worry about. Last week I was under-treated, dismissed, and misdiagnosed. This week I took charge of my health. This week I met with my medical team who arranged for a series of appropriate tests. This week I decided to not let the actions of a few individuals ruin my perception of health-care providers. Everyday we must continue to spread awareness and educate others about the realities of invisible and chronic illnesses. #spreadawareness #pots #sjogrens #syncope #spoonie #dysautonomia #chronicillness #vegan #bekind #mcas #aps #cfs #posturalorthostatictachycardiasyndrome #sjogrenssyndrome #autoimmunedisease #autoimmunediseases #warrior #chronicillnessfighter #csf #cerebralspinalfluidleak #love #fighter #antiphospholipidsyndrome #chronicfatiguesyndrome #mcad #mastcellactivationdisorder #mastcellactivationsyndrome #chronicillnesswarrior
Last night I was talking to a friend about how much I hate my scars from my recent surgery and he said the most poetic and sincere thing I have ever heard come out of his mouth: “I think our scars make us beautiful. Life is too short to bring your body to the end without scars. We get one life and one body, so we might as well use it and abuse it and hit the finish line covered in scars that tell our story.” I have a lot of scars — some big, some small — from so many battles I’ve faced and conquered over the years, but I had never thought of them as anything but ugly imperfections until @bend.it.like.bennett completely changed my outlook. If you’re struggling to accept your imperfections— whether it be scars, cellulite, stretch marks, etc.— I hope his words resonate with you like they did with me and give you a little peace of mind. Love every inch of yourself, down to every cell of your being, every.single.day. You and your body can do incredible things together once you realize you’re on the same team.
What in the world is going on here ?? One of the traditions at my college is the ringing of the Wren Bell - the bell that is in the oldest academic building still in use in the US ! Every year on the last day of classes, seniors line up for their turn to ring the bell to signify the end of their time at the College. Last year, I didn’t ring the bell even though I was a senior. In dealing with my medical issues all spring, I didn’t feel like I could celebrate finishing my degree. But this year is a different story - even though it’s not the last day of classes (graduate students get to ring the bell a week early !), I finally got the chance to participate in the tradition. It doesn’t seem like a big deal, but for me, it symbolized my fight through everything life has thrown at me over the last eighteen months, and getting to celebrate the tremendous accomplishments I’ve had while figuring out life with Olly and my other chronic health struggles. So I rang that bell nice and loud - it’s time to celebrate how far I’ve come and how far I’ll go !
I would like to introduce you to my beautiful Jennie. She is a purebred yellow labrador retriever. She is sweet as honey and very eager to work. She loves her job, but is a goof ball as well. I fell in love with her the first moment I set my eyes on her. We have quickly become inseparable and continue to develop our relationship day by day. I could not have been paired with a better dog for me! So grateful!!! #accessibility #photodescription [Sarah in her wheelchair and Jennie the light yellow lab lying beside her on leash] #servicedog #servicedogsofinstagram #servicedogprogram #newdog #newservicedog #dogbonding #iminlove #bestdogever #labradorretriever #yellowlab #beautifuldog #ehlersdanlossyndrome #dysautonomia #posturalorthostatictachycardiasyndrome #zebrastrong #chronicillnesswarrior #chronicpainwarrior #wheelchair #mobilityassistancedog #grateful #chronicallyextraordinary
I finally filmed a video all about my illness and what it was like to live with dysautonomia. I can’t lie this video was actually hard for me to film because this is the first time I’m talking about what it’s like to live with postural orthostatic tachycardia syndrome... or POTS. I hope you guys enjoy this one. For all my makeup lovers out there don’t worry I’ll be back with another tutorial soon 😉 #pots #posturalorthostatictachycardiasyndrome #chronicfatigue #chronicmigraine #dysautonomia #dysautonomiaawareness #potsawareness #potssyndrome
@servicedogoliver and I had to go back to the wheelchair place today 😂 the boys were great. Gnar pushed wheelchair buttons for me like a pro! But I'm a lame handler and forgot to video 😂 he heeled well and navigated tight doorways with my chair. We worked on our "go through" command, which is one of two commands I use to fit through doorways that are too narrow for a dog and chair. Gnar is learning to walk through the doorway before me, turn around to face me, and back up while I roll towards him, and then finishing in a heel. He also ignored multiple people and the wheelchair tech kneeling right in his face! Gnar's weakness is humans 😂 he loves drive by sniffs and sniffing the air where people have passed by. We are working on him ignoring people when they come close and he's already improving! His auto leave its with dropped food are also getting super solid. I'm very proud of him. ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #servicelegendgnar #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
Nearly 2 litres of green smoothie! Bananas spinach raw honey and loads of berries. What a breakfast...and morning tea...and possibly a snack before lunch😃 can't have too much green smoothie. In a massive attempt to straighten up my gut biome, hopefully help my cells get as much nutrition as possible, and even a little jolt of morning energy, breakfast is fast and easy to absorb in this healthy drink. Crossing my fingers! What do you have for breakfast? #healthyliving #healthyfood #healthylifestyle #healingwithfood #healingforlife #hopeforthefuture #cfsme #mecfs #pots #chronicillness #gutbiome #smoothies #chronicpain #invisibleillness #link #greensmoothies #posturalorthostatictachycardiasyndrome #melanieifield #thisismylife
Day 110: 20/04/18 #photoaday • • The usual awkward Friday gym pic 🙃 had my final session of the 12 week exercise physio course I’ve been doing. I’ve definitely seen improvements so I think I’m going to keep trying to go to the gym when I can 😊 my blood pressure was really low today though which was annoying 🙄 but I managed to do some light jogging on the treadmill!! I haven’t been able to go running since 2015 due to various health issues and I really miss it. So hoping this is a positive sign that I might be able to run again someday?? Maybe not proper races again but just jogging for a few minutes today made me feel so happy 😄 then despite the beautiful weather, this afternoon was spent resting and revising 😴 #ehlersdanlossyndrome #eds #gym #fitness #exerciserehab #physiotherapy #posturalorthostatictachycardiasyndrome #pots
Having a pretty great day! Went to the gym this morning, bleached my roots so I can dye my hair again, and I got a package from @sweetninked with compression gloves and a vogmask!! PC @sage.corr #spoonie #spoonies #spooniestrong #eds #ehlersdanlossyndrome #potssyndrome #posturalorthostatictachycardiasyndrome #mobilityaid #caneuser #vogmask #mcas #cripplepunk
I've waited so long to be able to hold this little munchkin in my arms! The absolute worst part of my recent surgeries/hospital stays was not being able to go meet my nieces. So happy!
Blue Bonnets are blooming.💜💙Looking forward to the weekend. I have road trip 🚘 travel plans with the fam. I'll be going to a festival & to Waco. Magnolia Farms here I come!😆🙌🏼
Going out to another show tonight! Right now I am trying to soak up as much sunshine as possible. Although with the weather finally changing my joints and my blood pressure are acting up. #ugh . . . #posturalorthostatictachycardiasyndrome #chronicallyill #chronicallyill #invisibleillness #butyoudontlooksick #pots #potsie #dysautonomia #spoonie #chronisillnesswarrior #peoplehopetribe #gastroparesis #chronicpain #chronicfatigue #chronicallyfabulous
What I thought was supposed to be an appointment to discuss my mental health was an appointment where I was "diagnosed" with another condition. The psychiatrist said I have mitochondrial disease, when I was already tested, and that I have cyclic vomiting syndrome because I vomit. The reason I vomit, that has been agreed upon by all my GI specialists, is because of my severe gastroparesis and intestinal dysmotility. Overall, we are not happy. He prescribed topamax, which I am not going to start until I talk to my team in 2 weeks. I am not going to be going back to him. #typeonediabetes #gastroparesis #gastroparesissucks #gastroparesiswarrior #pots #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #charcotmarietooth #gjtube #tubie #tpn #tpnlife #intestinaldysmotility #broviac #broviacline
Learning to enjoy the opportunities and freedom of being at home is hard. Any suggestions? I am losing the enjoyment of things. I wanted to to somewhere just to get out of the house and nothing sounded fun. I don't want to stop enjoying things what do I do? #struggle #chronicillness #chronicpain #ill #illness #pots   #posturalorthostatictachycardiasyndrome #disautonomia #puddingblood #medical #potsinternational #potssyndrome #inspiration #inspire #inspirational #passingout #migraines #heartpain #headaches #hydrate #healthy #dizzy #awareness #spoons #spoon #spoonie   #spoonielife
Mummy ate so much raclette that she required DPT to raise her blood pressure after all her blood went to her tummy. Not what an assistance dog is for, mummy! But *sigh* I’ll do my job anyway.... #assistancedog #posturalorthostatictachycardiasyndrome #tasktrained #noregrets
Hey guys! Today I had the amazing opportunity to be interviewed by The Celiac Project! Our interview will be on their podcast soon (two weeks ish), if you follow them on Facebook you can hear it when they release it! I was actually interviewed by them a year ago. That interview was all about Piper and my history of what we thought was Osteoporosis. If you want you can check out that podcast too! It was so great to talk with them again, I hope you enjoy it! We talked about POTS, MALS, and the struggle of getting accurately diagnosed. Let me know what you think!
I set my alarm for 2 hours before I actually get up so I can take my meds and have them working by the time I need to be functioning. Yeah, right. I haven't even sat up to a full 90° yet, let alone put my feet down. So far unimpressed with ivabradine - even though it's supposed to be the miracle drug for #potsies #tachy #tachyaf #tachycardia #pots #posturalorthostatictachycardiasyndrome #ist #inappropriatesinustachycardia #dysautonomia #dizzy #idontlikethis #ugh #spoonie
Hey guys; just a quick update. My health hasn’t been doing good AT ALL these past few months and I’ve just been really out of it so I’ve literally forgotten to post since Anime Boston😅 I wasn’t trying to avoid this page, I actually forgot this page existed; that’s how out of it I’ve been lately. Anyway, Ruby and I have been taking it as easy as we can and are trying to take life one step at a time. I got an exercise bike in my room now ((it’s pink cause I’m annoyingly extra as hell)) and I’ve been trying to do yoga every morning ((but NO bending over poses cause that’d be disastrous)) and its actually making me feel a tad bit better, surprisingly. More energetic, if you wanna say that. Also, I think I’ve addressed this every but on this page which is hilarious cause this page is entirely about my illnesses and Ruby’s work for those illnesses, but I was officially diagnosed with Gastroparesis a few weeks ago. It’s been wrecking my body and I feel like that’s what’s been bothering my condition the most recently, but I’m trying to get it as under control as possible ((and I’m failing miserably at it lmao)). Although I can’t eat much of anything at all and I’ve lost a good 50lbs in the past four or so months, I’m still trying to look on the bright side and not let this illness kick the shit out of me. I’m tired of being weak and helpless, y’know?? So I’m trying my damndest to fight back right now💪🏻 Anywho, that’s all I’ve gotta say for now!! I promise I won’t forget about you guys again lmao. #HealthUpdate #Health #FightingBack #Bullmastiff #ServiceDog #SDiT #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Raynauds #Gastroparesis #Hypokalemia #GP #Dysautonomia #ChronicallyIll #iPhone #Otaku #Nerd #Love #Laugh #GPAwareness #Awareness #LGBT #Gay #Transgender #Trans
I did it and survived! 10 minutes on the recumbent bike. Didn't get muscle tremors, didn't get vertigo, sweat 10 gallons, chest got tight, totally felt the burn, but I pushed through. I was so scared and nervous to go to the gym. I was afraid I would have an episode and have to lie down. But I didn't. My body handled it. One step at a time, I will rise.
Today Ted and I met our Local MP - Graham Jones - to discuss problems with getting my heart medication prescribed. Some of you may have heard me mention it but this has unfortunately been an ongoing battle since July 2015. We've been left doing a 6-8 hour round trip for medication every month which simply can't continue. We have a great plan in place including contacting Jeremy Hunt who is the Secretary of State. We can't thank Graham enough for his time and support. Hoping that this will finally put an end to a long uphill battle! Ted was of course fantastic, lying under my mums chair the whole visit. It was great practice for an upcoming charity event we have next Wednesday where I'll be giving a speech, more on that later. Hoping everyone is well, we miss being more active here! ❤
Keep climbing, friends. We’ll get there together. 💛 📷:@norrisniman
There’s a lot of rhetoric in this community around being a warrior and how brave we are. That’s all well and good and very much needed at times. But I’m here to say that I’m also really. fucking. afraid. a lot of the time. That I cry and grieve, over and over again. That I get angry with my illnesses and take it out on those I care about most. . Chronic illness provides a whole tapestry of “negative” emotions for us to choose from. But we don’t talk about them as much as we really should. Because they’re such an important part of processing, of grieving, and of living. As one of my favorite poems so often reminds me: .“Verily you are suspended like scales between your sorrow and your joy. Only when you are empty are you at standstill and balanced.” . So what are you afraid of today? Me, I’m afraid of my latest diagnosis, Small Fiber Neuropathy. My doc believes that Lyme, and probably an autoimmune disease kicked off by Lyme, have eaten away the small nerves that go to my extremities, leaving my feet, legs, and hands with a constant pins and needles feeling with burning and occasional bursts of nerve pain, particularly in my feet. These small nerves also surround my heart and play a big role in the function of the autonomic nervous system, so this may also explain some of my cardiac and autonomic symptoms. The condition is progressive. Sometimes treating the underlying cause can halt, and in some rarer cases, reverse some of the damage, but in other cases not. In some cases, progression is slow and in others, the disease progresses faster to large nerve involvement. . That’s a lot of uncertainty to hold and it’s requiring a lot of emotional processing. Which is normal, but can feel abnormal because we don’t talk about it enough. I think we often forget that we can be brave and strong, but still very much afraid. I can be hopeful, but still grieve. Our lives are messy and that’s ok. And we should talk about it just as much as we talk about any other part of living with illness. #talkaboutit #negativeemotions #lifeismessy #kahilgibran #negativeemotionsareok #emotionalprocessing #pinsandneedles #smallfiberneuropathy #nervepain #autonomicdysfunction
Dear mom, I’m sorry it has to be like this. I wish you were able to get a good night’s sleep instead of getting a call from me "mom don't panic", or instead of dozing in a hospital chair all night, and having to go to work the next day. I wish you were able to go on vacations without worrying if today is going to be the day where I faint and hurt myself too much. I wish you were able to enjoy time with your friends or at your job without being glued to your cell phone, expecting the next call to be from me panicked or from the hospital. I wish it all went away, because I can’t stand seeing things put on the back burner for me. I know I’m never going to be able to take back all of the worry, and the time you spent caring for me, but I can assure you, Mom, I’m going to try my hardest to make you proud of me. I’m going to push myself as hard as I can because I want to see you smile the way you were always meant to. But I will succeed. I will survive this journey because I know you are right next to me. Thank you for always believing in me, for saying that I am just as capable of being someone as great as anyone else in this world. Thank you for never letting my health get the best of me, and telling me that there will be an end to this suffering someday, that there will be a moment of peace where you can look back and say “she made it.” And until then, I will appreciate every moment with you, the strong woman I strive to be. The woman who doesn’t complain about that hospital chair, the new diagnosis, the worry. The woman who hides her tears to be strong for me. Because without you, I wouldn’t be forcing myself to get out of bed in the morning and appreciate the beautiful world I am lucky enough to be in today. Love, 
Your warrior. #spreadawareness #pots #sjogrens #syncope #spoonie #dysautonomia #chronicillness #vegan #bekind #mcas #aps #cfs #posturalorthostatictachycardiasyndrome #sjogrenssyndrome #autoimmunedisease #autoimmunediseases #warrior #chronicillnessfighter #csf #cerebralspinalfluidleak #love #fighter #antiphospholipidsyndrome #chronicfatiguesyndrome #mcad #mastcellactivationdisorder #mastcellactivationsyndrome #chronicillnesswarrior
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