On musical.ly there’s a woman who was in a diving accident and is now a #tetraplegic (meaning she can’t move her legs or hands but can move her arms) and she makes awesome musical.lys and I was given the privilege to not only get a follow back from her but also she likes and comments on my musical.lys and she’s the nicest person you’d ever meet... she finds positivity in being kind and helping others and she’s someone I look up to as a person with a disability 💕 #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #edswarrior #potsiestrong #potsieprincess #cutegirlsofinstagram #pegasister #mylittlepony
3 0
I always try show the good things in life but every morning and evening, I’m reminded that I do have some limitations #rarewarrior #medication #epilepsy #myoclonus #recurrentacutepancreatitis #posturalorthostatictachycardiasyndrome #chronicillness #invisibledisease #makethemostoflife
4 0
I tried to change the lancet and dropped the whole thing in the sharps container... #fail Thank you mast cells for my stellar fine motor control. 😒 #hypoglycemia #mastcelldisease #dysautonomia #ehlersdanlos #raredisease #medicallycomplex #allergictolife #invisibleillness #makeitvisible #chronicillness #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #EDS #pots
5 0
My boys ❤️❤️ A big thank you to the Mall at Millenia for your educated staff! This was the first time I’ve been asked the 2 ADA legal questions. I know it’s rare to see a tandem service team but I appreciate the education and enforcement of ADA laws so much! If you want to go somewhere and be safe with your service animals, this is the place to be! @mallatmilleniaphoto #ada #servicedog #tandemservicedog #tandemserviceteam #servicedogintraining #futureservicedog #emmettservicedog #dukethesuperdog #cardiacalert #cardiacalertdog #seizurealert #seizurealertdog #dys#dysautonomiaicedog #dysautonomia #orthostatichypotension #posturalorthostatictachycardiasyndrome #POTS #autonomicneuropathy #ehl#ehlersdanlosrome #ehlersdanlos #ehlersdanlosservicedog #raredisease #rarediseaseawareness #chiari #chiarimalformation #chronicpain 🐾 Our pack: @livergsd_servicedog @cardiacalertk9apollo @kaytoo_the_pibble
28 1
I’ll have some of whatever they’ve had please! 🙋🏻‍♀️😂😂🐴 #ifonlyihadtheirenergy #springfever #horsesofinstagram
7 1
When your best friend turns into a photographer💁🏻📷 quite surprised at how much I managed today despite the pain. Subluxed hip, pinched nerve, and feeling very worn out but it was worth it for this perfect view #ehlersdanlossyndrome #chr#chronicillnessger #chronicpain #chronicillness #posturalorthostatictachycardiasyndrome #porthcawl #sea #beach #seaview #feelingpained
11 1
My new man 😂 #heyfisherboy
34 2
21 0
Nope not dead yet... My mom told me today I remind her of my Gramma because I find a reason to smile every single day. My Gramma died of Cancer on April 4, 2013..... When we brought her into the hospital we had just come home from a family vacation to Florida and she was fine before we left... when we got home though she was unable to walk without assistance and was ow ow owing her way across the floor to the bathroom and was unable to get back upstairs so she was trapped in the basement. We called an ambulance and they rehydrated her in the emergency room through IVs and ran some tests and when the doctors found the extent of her cancer they told us 8 different ways “I don’t know how she is still alive... this woman should be dead” and that stubborn woman still lasted another 2 weeks to have time to say goodbye to everyone who came to see her. My gramma was a woman with the heart of a warrior and wasn’t gonna let go until all her unfinished business was wrapped up... and the last thing she said to me was “Life is good”... I have taken that message to heart and I try to look for the little things in life because sometimes it’s the little things that make you stronger and give you the ability to want to fight. (The second photo is the last picture I ever took with Gramma before she passed away) #wordsofwisdom #cancersucks #inmemoryofgrandma #ehlersdanlossyndrome #edswarrior #spoonie #chronicillness #storytime #differentlyabled #lifeisgood #posturalorthostatictachycardiasyndrome #irlensyndrome #gastroesophagealrefluxdisease #irritablebowelsyndrome
32 0
Target, oh how I missed you! Four months apart way too long! 🎯💸🛒 #targetwithdrawals #ievenwalked💪🏼
18 1
But you’re gone. You are the only person that understood and related to me in the same point of view of illnesses. I miss you. 『 🕯』 〔 #chronicpain | #chronicillness | #IBS | #irritablebowelsyndrome | #POTS | #posturalorthostatictachycardiasyndrome | #spoonie | #chronicwarrior | #life | #blog
8 1
"It's okay to be a glowstick. Sometimes we have to break before we shine." -Author unknown ▪️▪️▪️ The people I admire the most & the people who love me the best have one thing in common: they have been broken. They chose to FEEL the breaking instead of running away from it or numbing it. Those are my people. ▪️▪️▪️ Here's to being a ragtag group of wounded healers, a tribe of glowsticks who are brave enough to break before they shine, knowing that we can light up the world if we don't run away from the breaking. #peoplehopetribe #chronicinflammatoryresponsesyndrome #chroniclymedisease #chronicillness #posturalorthostatictachycardiasyndrome #POTS #glowsticks #healinghappens #justkeepswimming #lifeishardandgodisgood #morethanlyme
19 5
🙌🏼 Saturday Success . A trip out on a Saturday can keep me going all week. And this one’s been emotional. . Sitting down and trying to write for the site has been a nightmare cocktail of brain fog, muscular pain and insomnia. . If I were looking after someone else in pain, there’s no way I would tell them that they weren’t eating again, taking a break or quitting until they had finished... so why do I do this to myself?! . It isn’t anymore productive. It doesn’t make be feel happy, relaxed or any more proud of my achievements. . Mid-week I realised what I was doing (mid sorry sob), let up myself and focused on what I want to do for ME this week! . I ordered a box of lovely lush goodies, and planned a weekend of fulfilment. . Last night me and T went to visit my osteopath @hyntlebarnclinic for some quality catch up and pin-time, before getting cosy in front of a film. . And this pic is from today. We went for a drive, visited @firestationcoffee for a colourful and relaxed vegan lunch (we had olive tapenade and roasted veg toasties with sweet potato, cumin & sultana and and raw broccoli, tahini, & pumpkin seed salads) AND picked up some new plants and fishes for the aquarium!! . This is not a small day out. These are the highlights of my life. . Now into the bath and some Yoga pants... For a lay down. . #chronicillness #POTS #posturalorthostatictachycardiasyndrome #hEDS #EDS #chronicfatigue #MCAS #fibromyalgia #chronicpain #spoonie #recovery #acheivement #vegan #selfcare #selflove #lessonlearned #saturday #saturdayvibes #accupuncture #veganlunch #suffolkvegan #vegansuffolk #woodbridge #standinguptoPOTS #jointheuprising
20 0
What happens when a nice person gets pushed to their limits due to chronic illness. Pain is a bitch it kinda just slips out sometimes. #struggle #chronicillness #chronicpain #ill #illness #pots  #posturalorthostatictachycardiasyndrome #disautonomia #fun#funny #medical #potsinternational #potssyndrome #inspiration #inspire #inspirational #sarcasm #amusing #funny #irony #hydrate #hea#healthy #health #medicine #doctors #nurses #er #awareness
63 2
I just don't not want to feel like I have to lie because I don't fit the social norm. Are you better yet? "Yup" (Even though I have explained to you 100 times it is a perminant chronic illness) #struggle #chronicillness #chronicpain #ill #illness #pots  #posturalorthostatictachycardiasyndrome #disautonomia #fun#funny #medical #potsinternational #potssyndrome #inspiration #inspire #inspirational #sarcasm #amusing #funny #irony #hydrate #hea#healthy #health #medicine #doctors #nurses #er #awareness
68 3
I am the inner old person that wants everything to be silent but I am the outer child constantly making noise... I yell at myself a lot😂 #struggle #chronicillness #chronicpain #ill #illness #pots  #posturalorthostatictachycardiasyndrome #disautonomia #fun#funny #medical #potsinternational #potssyndrome #inspiration #inspire #inspirational #sarcasm #amusing #funny #irony #hydrate #hea#healthy #health #medicine #doctors #nurses #er #awareness
75 2
"You are the oldest you've ever been, and the youngest you'll ever be again" One of the silver linings to having incurable diseases...is the perspective to invest your time & energy in nourishing places. Recognizing that it's okay to let go of things that no longer serve your greater good. Our lives are precious & so very temporary...spend them wisely. It's okay to recognize that you've changed. That your relationships have changed. Change is the only constant truth. Relationships should support, empower, & bring out the best in you. Not make you small & feel powerless. If they aren't nourishing you...it's time to let them go... Yesterday I started my day by having an EEG at the hospital (my heart & my brain are having a complicated time communicating- my heart is working much harder than it should be doing simple tasks.. like standing up...) then in the afternoon at Harvard, I witnessed a woman collapse, have a heart attack, and die on the street... She had a bag of books she had just purchased at the Coop.... EMTs had to cut off her clothes.. right there on the street to perform CPR... but she was gone... I’ve been thinking about my own mortality a lot these past few months... coming to terms with my own heart disease & stage 4 endometriosis... recognizing that health is paramount... both physical... and mental. And so much of that is influenced by our day to day moments & the people we choose to share time & space with. I am grateful for the learning opportunity that comes with having chronic disease. It isn’t convenient, easy, or without struggle. But the perspective is priceless. (Thank you my beloved @the_ambrose for sharing this beautiful E. Roosevelt quote. I love you fam 💕) #HeySgay #WomenWhoDraw #HeartDisease #End#Endometriosis #PosturalOrthostaticTachycardiaSyndrome #POTs #Dysautonomia #Spoonie #Endo #spoonielife #chronicdisease #chronicillness #lifeisshort . . . #ill#illustration #ske#sketch #dra#drawing #sketch #IllustratorsOfIG #Art #NeverNotDrawing #art #illustration #drawing #illustratorsoninstagram #illustratorsofinstagram #dailydrawing #DrawEveryday #Wisdom #WiseWords
102 11
I love this picture. She’s getting so big. I spent all night last night in the ER getting fluids. The attending doc gave me the choice of being admitted or not and since all of my normal docs are 2 hours away he thought that I wouldn’t get much accomplished with being admitted so I decided to come back home. All of my labs are borderline and trending downward. My stomach, bladder, and parts of my intestines are distended. Apparently I have gastroenteritis on top of whatever is going on. And my liver hemangiomas have grown significantly. I had ketones and a small amount of blood in my urine but for now my kidneys are ok. And my CO2 blood level was high. Fun times. I got 2 bags of fluids though so that should help for a little bit. Hope everyone’s weekend is going as well as can be expected. #ehlersdanlossyndrome #gastroparesis #gastroenteritis #posturalorthostatictachycardiasyndrome #pots #smallfiberneuropathy #invisibleillness
12 10
Only you know your truth, and the people who matter won’t mind. And the people who mind don’t matter. 💛 📷: @mindpowersoulpower #ChronicLoveClub
482 25
2 more blankets are available on my shop! The teal one is the only one of that pattern but don't worry, I will be getting more soon! The bee blanket is the LAST ONE as the store is SOLD OUT and will be a few weeks before they are restocked. A new blanket will be going up soon and it's one that you guys voted for! #typeonediabetes #gastroparesis #gastroparesissucks #gastroparesiswarrior #pots #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #mitochondrialdisease #gjtube #picc #tpn
47 1
13 1
I’m in #Vienna! 🇦🇹 The traveling was a bit of a pain (both figuratively and literally!) but overall was ok. Today we’ve done quite a bit of walking which means I’m now in a substantial amount of pain and am missing out on the Stable Tour at the Spanish Riding School. We’ve come for Mum’s birthday treat, so as long as she’s getting to go, I’m happy. I HATE when my #disability impacts other people, and I would have been devastated if Mum hadn’t have gone on the tour because I couldn’t (which is why I forced her 😊 those who know my Mum will know that’s a feat in itself!). On the plus side, I’m in the warm (it’s -6 outside!) and drinking some tea, so I’m ok 😊 and Briony (my sister) has looked up #wheelchair options from back home for me, so #herewegoagain 🙄. On the big big plus side - Vienna is stunning and I literally feel like we’re on a film set! . . . AATI ✌🏻 . . . #ehlersdanlos #ehlersdanlossyndrome #eds #posturalorthostatictachycardiasyndrome #invisibleillness #invisibleillnessawareness #chronicpain #chronicillness #chronicfatigue #spoonie #spoonielife #thepursuitofstrength #pos#positives #positive #chooseyourself #superwoman #superwomen
24 1
How I feel right now! Something I put a lot of energy and effort into over the last year or so has just finally paid off. I wasn’t sure it would, I wasn’t sure I’d done enough and I doubted my ability, but I put my mind to it and thank god I did because I’m buzzing right now I am so pleased. Just goes to show you can do pretty much anything if you want it enough!!!
46 2
Body this isn’t even funny. You really need to start treating me better because I’m considering leaving you. Seriously though, having a cold is hard enough as it is without having on top of a chronic illness! . . . #eds #ehlersdanlos #edstype3 #ehlersdanlossyndrome #sub#sublaxation #sublax #zeb#zebrang #zebra #chronicillness #chronicillnesses #pots #dysautonomia #potssyndrome #posturalorthostatictachycardiasyndrome #migraineawareness #chronicmigraines #migraines #butyoudontlooksick #snapkracklepop #jointpain #pain #chronicpain #degenerativediscdisease #discdegeneration #cold #ihaveacold
46 2
Mirror sefie at the cardiologist on Thursday. Sinus tachycardia confirmed and suspected due to mast cell disease. Going to try a new drug if it can be compounded and insurance will cover it. 🤞#cardiacarrhythmia #cardiologist #servicedog #goldendoodle #donotpet #dysautonomia #posturalorthostatictachycardiasyndrome #ehlersdanlos #pots #masc
24 0
Here is some facts of about the process of diagnosis and the lack of education amongst physicians. Patients living with rare diseases visit an average of 7.3 physicians before receiving an accurate diagnosis, according to a recent survey of patients, family members, physicians and allied health care professionals (HCPs). The survey results, were published in the current issue of The Journal of Rare Disorders (JRD). The survey, conducted on behalf of Global Genes, reflects a growing appreciation among primary care physicians (PCPs) and specialists of the societal impact of rare diseases, while also underscoring the burden shouldered by patients and family members. Key findings include: Most physicians (60% of PCPs, 80% of specialists) said they welcome the challenge that rare diseases bring and want to be part of finding a diagnosis. However, 40% of PCPs and 24% of specialists indicated that they lack sufficient time to do a workup for a rare disease even when they suspect the patient may have one. For patients, the mean length of time from symptom onset to accurate diagnosis was 4.8 years (range: 0-20 years). Forty-four percent of patients agreed with the statement, “Because of a slow diagnosis, treatment was delayed and the impact on my condition has been negative.” Global Genes also urges families to educate themselves and their doctors about genetic testing technologies that may facilitate an accurate diagnosis and potentially lead to effective and appropriate treatment. The organization recently launched the Undiagnosed Patient Program to improve access to genetic testing for undiagnosed patients. This program is one of many initiatives planned by Global Genes with a focus on identifying patients, supporting diagnosis and helping provide hope. Excerpt from https://globalgenes.org/raredaily/accurate-diagnosis-of-rare-diseases-remains-difficult-despite-strong-physician-interest/ #ehlersdanlossyndrome #awareaboutrare #rarediseaseawarnessday #rarediseaseday #rarediseaseawareness #rarediseaseawarenessmonth #complexregionalpainsyndrome #dysautonomia #posturalorthostatictachycardiasyndrome #innappropiatesinustachycardia #amplifiedmusculoskeletalpainsyndrome
8 0
So I got one of these bracelets from @spencers a few weeks ago... they are being sold to profit the @youngsurvivalcoalition and yeah I do think I’m tough.... 2 surgeries in 2017 alone, and I lived with undiagnosed Ehlers Danlos Syndrome until I was 20 with no one believing me when I said there was something wrong mislabeled as a psych case. I have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mitral Valve Prolapse, Irlen Syndrome, Gastro Esophageal Reflux Disease, Irritable Bowel Syndrome, Asthma, Depression, PTSD and Borderline Personality Disorder and to top it all off I have had 8 severe allergic reactions to something we still can’t figure out which nearly closed off my lungs and am getting my blood work for my mast cell activation disorder test done tomorrow... I dislocate joints daily..... my joints crack with every step I take and I currently don’t take any pain medication besides topical voltaren because Tylenol and Advil and Ibuprofen do nothing for the pain and because of the opioid crisis doctors won’t treat chronic pain cases so I grin and bear it... Ehlers Danlos Syndrome has no treatment other than pain manegement and physio and no cure.... so yeah I do think I’m tough. #thinkyourtough #spoonie #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #hypermobileehlersdanlossyndrome #heds #zebrastrong #zebrawarrior #dysautonomiaawareness #rar#rar#rarease/a> #raredisease #rare #imstrongerthanyouthink #disabledmodel #disabledandcute #selflove #selfacceptance
44 3
My hungry hungry hippo ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• Get 10% off for awesome @purplepoodles gear with the code "Grandpa10" ••• #medicalalertservicedog #ser#servicedog #spo#spoonie #chr#chronicillness #pts#pts#ptsdicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #mul#multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
197 12
Sleeping ♥️ Our trainer had to cancel on us today as something came up BUT it means that we get to go train with her tommorow in a group! Which sounds awesome, since we need to work on ignoring dogs! Follow my pawtners! @joy_and_alex @service_dog_mila @khaleesirichards @spoonie_kid @service_labrador @corkyopup 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
74 1
So I’ve been trying to build more muscle lately in my legs by walking with my crutches outside more but I have these weights now at home and I know it seems like it’s not a lot but with my hypermobile wrists it doesn’t take much to dislocate them... as a former dancer with Ehlers Danlos syndrome I’m trying to get back in shape and while I know I won’t be able to do the things I used to.... I want to try and maintain or even improve what I have left 💕👽💕 #spooniefitness #ehlersdanlossyndrome #edswarrior #potssyndrome #posturalorthostatictachycardiasyndrome #weights
36 1
My love and lifeline. Working with this dog is so special to me and I’m so grateful to have him. At just 9 months old he’s changed my life completely and I couldn’t be more grateful. He’ll never see this but I need to express my pride with more than cookies and luvins. Thank you for being wonderful Emmett ❤️ Follow his journey! @emmettinservice #servicedog #servicedogintraining #futureservicedog #emmettservicedog #cardiacalert #cardiacalertdog #seizurealert #seizurealertdog #dys#dysautonomiaservicedog #dysautonomia #orthostatichypotension #posturalorthostatictachycardiasyndrome #POTS #autonomicneuropathy #ehl#ehlersdanlosrome #ehlersdanlos #ehlersdanlosservicedog #raredisease #rarediseaseawareness #chiari #chiarimalformation #chronicpain #mastiffsofinstagram #servicemastiff #boxmas #boxermastiff Check out our pack 🐾 @livergsd_servicedog @cardiacalertk9apollo @kaytoo_the_pibble
38 1
It takes a lot of encouragement and support to keep fighting for your health when you feel like you're at a dead end. Over the last week, I've still been on the search for a diagnosis to my unexplained sinus tachycardia every time I stand up or exert myself. After all the previous testing, this week we added a PFT, hashimotos disease blood test, tested for h pylori in my stomach that could be causing some of my problems, called my spine specialist to run it by him, and we did a thyroid ultrasound to check for nodules. Every single one came back normal. Not gonna lie, I had a good cry about it which resulted in my fiance telling me that if we had to "go to a mystic in Russia to figure this out, we will." I'm so thankful for that support, especially when it feels like I'm crazy for not feeling as well as my tests say that I am. I will likely be referred to an endocrinologist next to test my hormone levels more thoroughly. Thankfully, my mom sees a great one for her type 1 diabetes, so I know I'll be in great hands. Stay resilient, y'all. Fight for yourself. And lean on the people around you when you need it. #chronicillness #chronicillnesswarrior #chronicpain #chronicpainwarrior #scoliosis #pot#potsrome #pots #posturalorthostatictachycardiasyndrome #gastroparesis #asthma #pcos #polycysticovariansyndrome #tachycardia #spoonie #dowhatyouthinkyoucantdo
17 2
6 years ago I was diagnosed with Chiari, in that time I have had around 14 surgeries due to Chiari/Eds/pots/pai-cah that’s around 2.3 every year. It’s crazy to think that creepy appointment I had 6 years ago with that Neurosurgeon who loved feet would have changed my life so much thankfully I am in a good place because my family and friends have never given up on me #pots #Chiari #chiarimalformation #cm #eds #ehlersdanlos #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #ai #adrenalinsufficiency #zipperhead #aniversary #brainsurgery #brainsurgerysurvivor
17 0
Please go check out my blog about Postural Orthostatic Tachycardia Syndrome and how I manage my symptoms the best that I can :) #pots #potssyndrome #posturalorthostatictachycardiasyndrome #potsbloggers #potsie
7 0
Ok POTS peeps...i had a visit with my PCP today and we added this med to my long list lol can anyone tell me how this drug affected your POTS...pro/cons?? Thanks guys!! #posturalorthostatictachycardiasyndrome
2 0
Got a new PICC line placed. It was a surprise and I wasn’t expecting at all for my doctor to okay another one, but I am very glad that he did. This one went a lot easier, I wasn’t a nervous wreck, and it’s now in my left arm instead of my right. Now I am just here at the hospital getting my fluids and taking it easy. 🙏🏻💉 #hospital #mayoclinic #phoenix #arizona #piccline #autoimmune #pots #potsie #spoonie #chronicillness #pain #posturalorthostatictachycardiasyndrome #mastcell #mcad #lupus #fibromyalgia #celiacdisease #fluids #iv #infusions
39 12
Molly & Olly’s Sock Puppet Theater presents: A Prolapse Story ! I’ve gotten a lot of questions about what a stoma prolapse is over the last week, and after doing some incessant research, I figured I would share my knowledge. So a stoma prolapse happens when your intestine “telescopes” through the hole in your stomach. The best way to explain this is with a sock - the picture on the left shows a normal stoma, where the cuff of the sock represents the stoma and the rest of the sock represents the intestine. Normally, the rest of the intestine sits behind the stoma, causing no problems whatsoever. But, when a stoma prolapses, some of that intestine comes through the stoma, as seen in the picture on the right. It’s like pushing the rest of the sock through the cuff when you match up your socks to fold them ! Prolapses can occur for a few reasons, like pregnancy, suture issues, or intra-abdominal pressure from coughing, and they can make the stoma wider and/or longer. My prolapses have occurred right after working out, and my connective tissue issues have a lot to do with why they’re happening ! A prolapse can go back in from lying on your back (a positional prolapse), or may remain swollen - it all depends on the person. Prolapses aren’t a health risk as long as the stoma isn’t turning any funky colors and is still producing output. It’s a weird sight for sure, which causes alarm the first few times it happens. But aside from changes in putting on a bag and making sure the stoma stays un-bruised, there aren’t a ton of risks associated with them. They are annoying to take care of though, so the ultimate fix for a prolapse is repair through surgery. Although I really wish I wasn’t dealing with prolapse problems, things could be MUCH worse. Plus, I had the perfect fuzzy socks to explain what one is ! #mollyollyostomy #ileostomy #ostomy #chronicillness #invisibleillness #spoonie #nocolonstillrollin #ostomates #stoma #ittakesguts #girlswithguts #chronicallymotivated #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome
406 21
Some days I get caught in the comparison game. I am frustrated that I am having to go through school more slowly to accommodate my illnesses. I am angry at my body for not functioning the way I’d like. However, comparing myself to healthy young adults is NOT fair to me. I am not inferior to those around me. I am taking care of myself, which is a full-time,unpaid job. A big thank you to a nurse who reminded me of my strength today and that it doesn’t matter how long it takes; the only thing that matters is that I don’t quit! So, if you are on a non-traditional journey, just know that you are not alone. ❤️ #StrengthToMakeItThrough #neverstopfighting #ehlersdanlossyndrome #fightlikeawarrior #chronicillness #posturalorthostatictachycardiasyndrome #chronicillnessawareness
27 1
Just saying... it's a recovery day. #posturalorthostatictachycardiasyndrome
8 0
Ended up back here again - If I’m ever lost you’ll probably find me here, it’s peaceful and I like it 👌🏻 unless of course I have actually been kidnapped and then this probably won’t be where I am. . Been here a few times in the past week, it’s just really calm and beautiful especially on a sunny day and is just nice to get some headspace and fresh air here, to sit in this spot and think or read my book for a bit. I get bored and restless at home, I don’t like feeling cooped up especially after I spent so long in my room last year and then a long hospital stay too. I’m now quite de-conditioned and I’m fighting to address that. I like to move, I need to move and get outside, it helps me in so many different ways, always has. 😊
30 2
Hey y'all! I’m Andrea/Chronic Pain Princess. I have been struggling with postural orthostatic tachycardia syndrome (POTS) and a few other issues ever since I was a little girl. The first time I passed out I was only 10 years old...it was crazy scary. Heart races, bad dizziness, chest tightness, and much more. Then when I was 26 weeks pregnant with my 2nd daughter we were in a horrible car wreck. It has, unfortunately, been a domino effect ever since then. I have bilateral thoracic outlet syndrome, complex regional pain syndrome, occipital neuralgia, and TMJ just to name a few things...all caused from the car accident. Thank God my baby girl was born perfect 3 months later, but giving birth with cracked/fractured ribs was NOT fun! In 2008 I had to have a left side rib resection/decompression surgery because my first rib was totally compressing my carotid artery and I was at risk for stroke or clot. In 2009 I had 3 more minor surgeries to try to relieve some of my pain...it didn't work. My ortho dr pushes me to have right side rib resection every time I see her but I refuse unless artery is completely blocked. Now my pain is manageable (pain levels 6-8) only because of my amazing chiropractor and massage therapist. They have seriously been godsends. I have my flare days that I can't leave my bed or chair but thankfully they are fewer and farther between. I'm so thankful for my faith, husband, and family. They are the reasons I get up every day. A few things about me that are not illness related.... ✨✨✨✨ *I adore my husband and children. I can’t imagine this life without them.* *Any time I can be outdoors is healing to my soul. I can’t always participate in outdoor activities, but just sitting and soaking up the fresh air is so soothing.* *I’m obsessed with animals, babies, everything vintage, and anything purple.* *Photography is my favorite hobby, although I can’t hold my amazing Canon camera for long periods of time.* *I am an old soul, born in the wrong century. If I could choose a time period to teleport to it would be America 1850’s or Paris 1920’s.*
182 54
Last weekend was tough, but I am so glad J&J were able to go spend a few days with family out in CA. I’m sure being the child/spouse of someone who is chronically ill is very hard. I try to remember that when they go out and enjoy time together. I know that one day I’ll get to rejoin then on all their adventures. I just hope it’s before she’s too cool to hang out with her mom. 😚 I sure do love them both. I absolutely love the last picture I’m sharing, hubby did a great job, as always.
69 6
Super excited because later I get to see my little brother and his fiance! He is an airman and I haven't seen him since July!!! Trying my hardest to stay hydrated, on top of my meds, and relax before work so I have enough spoons since we are going right after I'm done working. I'm sorry for not updating as often as I should. My MDD has been swinging really hard since I was ovulating and makes it so hard to function. But I'm feeling better now! May the spoons be in your favor! #ehl#ehlersdanlosrome #edsproblems #ehlersdanlos #ehlersdanlostype3 #pot#potssyndrome #pots #posturalorthostatictachycardiasyndrome #hypermobility #bloodpressureproblems #bp<#bprecovery #bp #rec#recoveryblog #recovery #eatingdisorderrecovery #chronicpain #chronicillness #chronicpatient #chronicdisease
28 4
You are looking, but do you really see? Do you truly see the person in front of you? Do you see the way their eyes light up when they talk about something they love? Do you see the way they hide their pain behind their laughter? Do you notice the littlest things that make them genuinely smile or those things that make their heart sink? I encourage you to take a moment outside of the noise that fills your life to truly see the people you encounter today.
73 1
19 1
Kambo accomplished... And I can't wipe the damn smile off my face. I feel amazing! I purged my lil butt off and feel like me again. I'm walking around with zero POTS symptoms and absolutely am having no problem keeping blood to my brain. Now this will take more then one treatment to help me... But honestly in this very moment I feel like I can do anything. It's okay if my pots creeps back in bc now I know I found something that the doctors couldn't help me with. I know this will be a process and not ignorant to think I'm healed. On another note... He did Rapé and most people purge on it... I sat there like I was given the happy drug. Plant medicine to heal by far has been more powerful then any other medical bs I have been thru. Fyi that color on my burns is dragons blood for healing.
30 7
I’m back! I deactivated this account for a while because seeing other handler’s progress with their much older dogs stressed me out for some reason. I spent some time training with him without feeling the “pressure” of updating everyone about it. He went to his first non pet friendly outing yesterday and did amazing. Was a little scared because it was the batting cages and it was extremely loud and overwhelming but he did very well. I’m back and will be posting daily:) - Follow my pawtners! @percy.sdit @service_unicorn_nakita - - #sdit #ser#servicedogaining #servicedog #sdteam #medicalalertdog #psychiatricservicedog #potssyndrome #posturalorthostatictachycardiasyndrome #chronicmigraines #sensoryprocessingdisorder #panicdisorder #chocolatelab #dog #labs
37 1
I’ve been getting a few of these weird, unexplained reactions recently. This one happened last night while I was getting my haircut. Nothing was different— not the shampoo or products or anything. They are itchy and annoying and come at the most inconvenient times. I did see an allergist a few weeks ago and I got bloodwork done to check for a few conditions that could cause random hives, but I won’t know the results for another few weeks. That being said, she’s pretty confident that’s its just a chronic idiopathic thing and we will never know why... fun times. Looks like I’m now going to be carrying around the allergy meds just like I do the Zofran🤷🏼‍♀️
223 40
I walk as much as I can but there’s a point at which that doesn’t work and so you have to limit your life to trips to doctors and grocery stores and strolls to the mailbox and back and it sucks #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #edswarrior #potsie #zebrastrong #dysautonomiaawarness #irritablebowelsyndrome #gastroesophagealrefluxdisease #spoonielife
34 4