#posturalorthostatictachycardiasyndrome

72,954 posts

Loading...
Loading...
🖤 Regrann from @crohns_spoonie - 👉 #TRUTH The physical scars... and the emotional ones. Everything we’ve had to fight... and are still fighting. The disease on the inside... and the bag or tube on the outside. The pain we swallow... and the smile we wear. Whatever you think you know... we are more than what meets the eye! We all have a story to be told ❤️ . #invisibleillnessawareness #youarenotalone . . . . . . . . . . . #ehlersdanlos #nevergiveup #autoimmunedisease #crohnsdisease #ostomy #spoonie #nocolonstillrollin #chronicallyill #selflove #potssyndrome #keepgoing #inflammatoryboweldisease #eds #dysautonomia #crohnsandcolitis #mastcell #ehlersdanlossyndrome #fibromyalgia #invisibledisease #chronicpain #IBD #mastcellactivation #autoimmune #chronicillness #posturalorthostatictachycardiasyndrome #crohns #invisibleillness 📷: Google
Looky what came! There was a bit of a scare because I was have a nickel reaction which really annoyed me because I though I could trust sterling silver, but alas I think it was just a coating so we should be safe! Yay 🎉 let’s see how much they help • • #eds #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #chronicpain #chronicillness #dislocation #spoonie #braces #silversplints
Ha I should probably update y’all it’s almost been a month. Not much has changed which is a good thing probably! Life keeps going. Haven’t been feeling extraordinarily terrible just keepin things mediocre. I have an appt next month with endocrinology for some weird results that I got back last year but they haven’t been able to get me in til now 😐 and I also have an appt with my cardiologist in August as well to discuss having a tilt table test done. All in all can’t complain although now that I post this I’m sure things will go to 💩😂 but for now happy friYAY y’all!
A small working video from today! McGee was moving slow cause it was hot today and he was tired. He had a long week this week 😅🐶❤️ . . . 🌺Check out my pawtners🐾 @cupidtheaustraliancattledog @superman_samson @winnie.theservicedog . . . Want to be pawtners? Just ask! 💞 . . . #servicedogs #serviceanimal #servicedogsofinstagram #servicedog #servicedogintraining #sdit #sd #chronicillness #psd #psychiatricservicedog #ptsddog #mobilitydog #POTS #invisibleillnesses #tasktrained #dogtraining #rawfed #posturalorthostatictachycardiasyndrome #dollartree
me too, ronnie. also, this account is going to be a bit more inactive because ronnie will be living with his trainer part time (she’ll have him mon-fri and my family will have him fri-mon.) so if i’m posting much less, don’t be alarmed, i just have less content to share!! hope you’re all well 💘💘
I’ve been a taylor Swift fan since her first single, but the past two albums have really resonated with me the most. When I was getting diagnosed my saving grace was 1989 album. I knew I had to be FEARLESS and the bad days won’t be FOREVER & ALWAYS. When I thought it was the END GAME taylor was always there. When reputation came out I had been experiencing severe panic attacks and was in a DELICATE state of mine. I always listened to taylor whether I was trying to get rid of ruminating thoughts or I was in my GETWAY CAR. I had BAD BLOOD with myself and my thoughts, but I learned to SHAKE IT OFF. Thank you taylor for getting me through some of my hardest times and can’t wait to see you again in Boston!! #reputationtour #taylorswift #repuation #chronicillness #invisibleillness
Have you ever wondered what it’s like to have a home nurse or have a port accessed? If so, there is a new video up on my YouTube channel. The link is in my bio description here on Instagram. . . . #homenurse #acessport #medicine #homenursing #infusioncenter #homehealthnurse #homehealthcare #powerport #infusions #ivinfusion #hydrationtreatment #hydrationtherapy #posturalorthostatictachycardiasyndrome #spoonie #spooniecommunity #potssyndrome #ivtherapy #mastcellactivationdisorder #youtuber #youtubechannel #youtubevideo #spoonievlogger
🌸🦓🌸 Messy hair, but I remembered to take a picture before taking my makeup off; so there’s a win! 🌸🦓🌸 #fragilebutunbreakable #posturalorthostatictachycardiasyndrome #chronicregionalpainsyndrome #zebrastrong #toomanydoctors #complexregionalpainsyndrome #ehlersdanlossyndrome 🌸🦓🌸
So damn true. Absolutely terrifying living with someone who endures this. But you need to step up and be “annoying” and check on them constantly and be in their sphere and face so they know they’ve never alone. It’s ugly and tough and scary but you just do it. . . #suicideprevention #mentalhealthawareness #mentalhealth #lovemychild #dysautonomiaawareness #pots #posturalorthostatictachycardiasyndrome #depression #anxiety #hamont
This is an accurate description of my life right now. But I know getting out and doing stuff (like seeing my bestie tonight) is worth it, no matter how exhausted and crappy I now feel. It sucks we pay the price to enjoy ourselves though. And there are times where I just can’t muster up the energy to do it, so I like to make the most of it when I can. The heat is really playing havoc with my #pots though. My autonomic system is being so sassy and isn’t cooperating at all. How’s everyone else coping in the heat? #posturalorthostatictachycardiasyndrome #fibromyalgia #ehlersdanlossyndrome #perniciousanemia #chronicfatiguesyndrome #chronicfatigue #spoonies #spoonie #spooniewarrior #spoonieproblems #invisibleillnessawareness #invisibleillness #chronicillness #chronicpain #autonomicdisorder #dysautonomia #dysautonomiaawareness #dysautonomiasucks #fibromyalgiawarrior #heartburn #livingthespoonielife #chronicallysally #posturalorthostatictachycardiasyndromesucks #thyroidproblems #hormonalimbalance
My beautiful partner and I went on a wonderful day to day. He took me to the mall and out to dinner. Was extremely low on spoons today and had to use my wheelchair in the mall and was still really tired but still had a good day. Not ashamed to say my partner and I are both individually in therapy and occasionally go to couples sessions. Really glad my therapist suggested weekly date night. It has definitely reinvigorated our relationship. [Image Description: selfie of Zoe and her partner Wesley.] #depression #ocd #anxiety #anxious #mentalillness #chronicillness #chronicpain #spoonieproblems #spoonie #spoonielife #spooniecommunity #nospoons #fibromyalgia #fibrowarrior #fibrolife #dysautonomia #dysautonomiawarrior #dysautonomialife #potssyndrome #posturalorthostatictachycardiasyndrome #ncs #neurocardiogenicsyncope #allergylife #allergies #chronicmigraine #babewithamobilityaid
Day 201: 20/07/18 #photoaday • • Managed to somehow find enough energy to have a fab day out with @millis_molly_mandy , @stellaj94 and George today 😄 Lunch out, a bit of shopping and some Gromit hunting, finished off with finally trying a freakshake! Because of my gastro issues I could only manage a little bit but the bit I did have was amazing 🤤 Also managed to get 30 plastic plates, bowls and cups in Homebase all for £3 total for my Brownies, love a bargain 😋 My legs and hips have been hurting a lot but I still had a fantastic day, I cherish these better days and hold on to them when I have not so good days! We planned lots of other exciting things to do the rest of the summer too 😃 ☀️ #ehlersdanlossyndrome #EDS #chronicpain #chronicillness #posturalorthostatictachycardiasyndrome #POTS #AFOs #GromitUnleashed2 #Bristol
It's a bad POTS day so McGee helped me walk when I went to pick up my medications. Featuring our harness by @purplepoodles . I love this harness for hot summer days because it's so light weight. . . . 🌺Check out my pawtners🐾 @cupidtheaustraliancattledog @superman_samson @winnie.theservicedog . . . Want to be pawtners? Just ask! 💞 . . . #servicedogs #serviceanimal #servicedogsofinstagram #servicedog #servicedogintraining #sdit #sd #chronicillness #psd #psychiatricservicedog #ptsddog #mobilitydog #POTS #invisibleillnesses #tasktrained #dogtraining #rawfed #posturalorthostatictachycardiasyndrome
Third iteration. And that's really it, for now. :-) It's been really fun to paint again after a lengthy hiatus. This painting is so much more alive than my last! . . . . #art #painting #acrylic #AcrylicPainting #abstract #AbstractPainting #AbstractExpressionism #Spoonie #pots #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #SpoonieLife #Creativity #Joy
Death by EEG. Today was a pretty horrible day. I had a second EEG today. One of the sleep deprived EEGs. Ahead of time we discussed how terrible the last EEG was on my body and they promised me that this EEG was simple and all I had to do was show up, they would attach the leads, and I would sleep for 90 minutes. We were told this several time. We were also told that as soon as I showed up they would wheel me in, as I cannot sit in waiting rooms without triggering seizures. I arrived feeling horrible and having some hospital ptsd symptoms. I broke out in goosebumps and a rash all over my body. We got inside and the receptionist told me that I had to go sit in the waiting room even though we told her why I wasn’t supposed to. Once they brought me back, the technician asked about if I had had an EEG before and I said I have, but not the kind I sleep. He said well, actually we do the flashing lights and breathing tests and then make you sleep. I was so stressed, shocked, and over stimulated, my body started breaking down and I started crying. I pride myself at handling pretty much everything until we make it to the car, but this was just one too many mess ups and misleading preps. He said he could just do the sleep part, but that the doctors would question him why. So I said no, it’s fine, just do it because I don’t want to go through this again. So he attached the leads (which I reacted to and still am) and then started the test by having me lay there and sleep (I never fell asleep because my body was so stimulated and stressed). After about 20 minutes, he said “ok test over.” I said “wait you didn’t do the flashing lights and stuff. “ And the tech got pissed at me and said that I had explicitly told him I didn’t want him to do them. I said “no I told you to go ahead because I refuse to go through this test yet again” and he started arguing about it. My mom was in the room and said that she had also clearly heard me tell him that I wanted him to do the full test. So he huffily finished the test (which was horrible I felt like I was perpetually on my way to blacking out and my body felt like it was shattering). Continued in comments⬇️
being chronically ill is a mess, especially when symptoms are completely unexpected. I’m in my chair full time now, and I’m having to relearn to do every day things. My hands used to rarely dislocate and now my partner is always manipulating my hands and wrists to get things back into place because my wheelchair is really hard on them. All of this would be easier if I didn’t have dissociative identity disorder. i can’t go to appointments alone because i don’t remember all the symptoms i experience and when, and i need someone to relay the information in the appointment to other system members when they front. if someone new or someone who hasn’t fronted in a long time shows up, they individually have to learn how to manipulate the body or deal with learning they are getting progressively worse with there being little-to-no answers. my partner regularly has to answer questions from other alters in this body about why the body hurts so bad, if theres a medication i can take, why i cant walk, why im in a wheelchair, etc... Im so thankful that my partner is so patient with me, and in fact deals with a lot of the same things (both physically and mentally). thank you to @theoperationcentre for being great, and for helping me ride the course of whatever the fuck is going on without screaming (though Jay did punch a wall that time...) ~ #undiagnosed #ehlersdanlossyndrome #dissociativeidentitydisorder #dissociativedisorder #mentalhealth #giproblems #spooniestrong #posturalorthostatictachycardiasyndrome #dysautonomia #wheelchairuser #neurological #peripheralneuropathy #endthestigma #mentalhealth
Listen to that little voice! We will never give up our quest for better health! Together, we can do this! 📷: @livelikeitsthewknd #chronicloveclub
Thank you to everyone for the thoughts, good vibes, prayers and love. Today is bad. Outpatient steroid injection went ok. He (another dr, mine wasn’t available, did the procedure) was successful, however he hit a lot of scar tissue and it hurt like hell. I’ve been sleeping on and off all day. I’m currently in excruciating pain and hoping that this worked, but I’m hesitant since in ‘11 & ‘12 with my other injections before my back surgeries it didn’t. But I’m keeping my chin up! #pots #posturalorthostatictachycardiasyndrome #potssyndrome #inappropriatesinustachycardia #heartmurmur #eds #lymedisease #lymediseaseawareness #fibromyalgia #stageivendometriosis #hystersister #hypermobility #degenerativediscdisease #discdisection #arthritis #medullaryspongekidney #ibs #gerd #migraine #chronicillness #chronicpain #autoimmunedisease #lymedontkillmyvibe #spoonie #dysautonomia #chonicillnesswarrior #invisibleillness #gastroparesis #depression #anxiety
Hanging out with sweet old Satchel. . Got a chest x-ray today to hopefully clear up some odd patterns that were on my breathing test. Then lots and lots of bloodwork needs to get done later this week. . In better news I am getting involved with a local theater working on stage productions with my bff @iliketshirts !! . . . #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #invisibleillness #butyoudontlooksick #pots #potsie #dysautonomia #spoonie #chronicillnesswarrior #peoplehopetribe #gastroparesis #chronicpain #chronicfatigue #chronicallyfabulous #chronicloveclub #witchesofinstagram #wicca #vintagevamp #vintagegoth #gothic #1940s #1940sfashion #pinupalternative #gothgirl #vampire #witch #halloween #blackcat #blackkitty
old photo, new post. The week of doctor appointments has come to an end! Today I had a GI appt. with the NP, hung out @ home, shopped @ Marshall’s, and had an appointment with my primary care doctor. So since I’ve been having increased GERD problems in addition to upper and lower abdominal pain, we decided to get some testing done. I will be getting another gastric emptying scan and another endoscopy. Those tests were done over 2.5 years ago, so I’m guessing things have changed and hopefully we can figure out what is going on. My EDS doctor and my primary care both ordered some bloodwork so I also got that done today. We mainly just checked in with my primary care. Since I see so many specialists, she oversees my care but she doesn’t typically prescribe medications or run testing. So since starting a medication to help with my fatigue yesterday, I’ve been feeling more awake and have more energy. I still feel tired but boy is it improved! I didn’t even nap today😱 I upped the dosage of my lyrica on Tuesday night and even I take the pill, I get kinda foggy and weird feeling but last night I got sooo weird and loopy. But apparently it takes a week to get used to the new dose. Looking forward to a appointment-free weekend. Comment your plans for the weekend (even if they are sleeping lol cuz that’s my plan) Love always -Laur❤️ . . . . . #eds #zebrastrong #ehlersdanlossyndrome #chronicillness #pots #allergies #anaphylaxis #crps #complexregionalpainsyndrome #chronicpain #chronicillnesswarrior #chronicillnessawareness #ibs #gerd #youtube #youtuber #migraine #chronicillnessyoutuber #medicalyoutuber #healthyoutuber #smallyoutuber #irritablebowelsyndrome #wheelchair #wheelchairlife #mcas #mcad #mastcellactivationsyndrome #mastcellacivationdisorder #posturalorthostatictachycardiasyndrome #mals
Every time I think I’ve figured my body out - what makes it tick and why - it likes to remind me that it has an abundance of tricks up its sleeve. I slip into a comfortable routine and what I assume to be a mutual understanding with my body, and then I end up in the ER. 🏥 This morning I had uncontrollable, full body, seizure-like muscle spasms that lasted for nearly 2 hours and prompted an ambulance call and trip to the ER. Ultimately, the spasms slowly subsided and eventually stopped on their own. No one was able to tell me what had happened, and my visit was made especially frustrating by chart difficulties and the fact that no one really understood my conditions and the potential implications of this spasm episode. 🤦🏻‍♀️ My best guess is that I had a severe dystonia episode (which is not uncommon with EDS), and I will certainly be following up with my doctors to make sure we get to the bottom of what happened today. It was a scary way to start the day, and I’m so thankful that everything turned out okay in the end! 🙏🏻 #ehlersdanlossyndrome #chronicpain #wheelchair #buildaladder #dysautonomia #portacath #posturalorthostatictachycardiasyndrome #gastroparesis #feedingtube #gjtube #mickeybutton #tubie #spoonie #chronicillness #invisibleillness #zebrastrong
Done more work on it. I might leave this for at least a week now, because I have a history of screwing up paintings I kinda like by rushing to do more to them! I like this because it's cheerful and looks good up on the wall. (Got a more true-to-colour photo on daughter's phone) . . . #art #painting #acrylic #AcrylicPainting #abstract #AbstractPainting #AbstractExpressionism #Spoonie #pots #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #SpoonieLife #Creativity #Joy
Sometimes our brains fixate on lies because of anxiety, depression, or something else. Can I remind you of a few things? Here's the truth: ▪️You matter. ▪️You are worthy of love. ▪️It's good to have boundaries. ▪️We all need help sometimes & it takes strength to ask for it. ▪️You deserve to feel safe at home. ▪️You make the world better, just by being here. ▪️You can do hard things. When the brain replays lies on an endless loop in your mind, it can help to write out some truth and put it somewhere you look each day. Over the years, I've stuck positive affirmations on my fridge, my mirrors and my walls with sticky tack or tape. If you're open to it, give it a try! *I don't have the source for the image. If you do, let me know. #peoplehopetribe #chronicneurologicallyme #chronicillness #lifeishardandgodisgood #anxiety #depression #posturalorthostatictachycardiasyndrome #lymedontkillmyvibe #lymedisease #chroniclymedisease #mentalhealthmatters #mentalhealth
People, #adrenalinsufficiency is a pretty serious condition. When our bodies stop producing cortisol it can put us into a serious crisis . An #adrenalcrisis can be deadly so I don’t understand why my doctors seem so #laissezfaire about it. While I feel a bit better than I did yesterday I’m still very tired, mild fever and completely swollen. I see a new #endocrinologist on Friday at the recommendation from a couple friends. Hopefully this doctor will have more insight into my #secondaryadrenalinsufficiency . For some reason #palliativecare is like a bad word around my #primarycare doc. I wish he understood it’s not hospice and it’s a better was to manage my comfort. Also please don’t tell me I’m going to #liveforever . A) it completely mitigates my deteriorating conditions and B) anyone who thinks I want to live like this the next decade or two is out of their minds. Being sick and in pain every single minute of every waking day takes a complete toll both physically, spiritually, and emotionally. #hospitalssuck #hospitalstay #trihealth #adrenalinsufficiency #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #posturalorthostatictachycardiasyndrome #potssyndrome #raredisease #invisibledisease #invisibleillness #invisibleillnessawareness #mcas #chronicallyfabulous #chronicallyrara @ehlers.danlos @ehlersdanlosuk @themightysite @trihealth @aiunited @dysautonomiaintl @dyssupport
The new feeding tube is in and I am home chillin’ with Mr. @weasleythepersian. They actually had to do two placements because my Mickey GJ button got mixed up with another patient’s. Once they got the first tube in, a nurse came to inform the radiologist what happened just as he noticed the J portion wasn’t long enough. So, that one had to be pulled and replaced with the correct tube. Thankfully the mistake was noticed prior to me leaving the hospital. Those things happen and both placements combined only took a total of 8 minutes! 🙂
medical travel // People with complex or rare illnesses often have to travel long distances to see specialists. Every few months, I travel 3 and a half hours to see an Electrophysiologist, a doctor who specializes in heart rhythm. This is a picture of a very tired Lacey, but we’re on the road back home now! Unfortunately, my autonomic test results showed decreased heart rate veritably and decreased sweating, which my EP thinks is from the structural issues of my heart vs. all POTS. But some good news came from this visit; my aortic dilation is safe and stable right now! I’m now off my bimonthly schedule and won’t need to go back until next year! and yes, there was going to be a vlog but I didn’t have enough energy lol. and check out that scoliosis 😝 Image description (added at a later date): Lacey is sitting atop a blue exam table with her legs criss-crossed. She is wearing a burnt orange shirt that says “avocado toast” in white block letters. Her wavy hair is tied into a loose bun. Her head is tilted slightly, smiling, and round tortoise shell frame her eyes. Behind her is a poster that says “Understanding Cholesterol” with a large diagram of a liver and vascular system. End of image description. #accessibilitymatters
💲💲💲💲💲 This is the reality of life with a chronic illness; medical bills on bills on bills. Finances have always been a huge source of anxiety for me. This got SO much worse when my symptoms started getting worse over the past few years. I just saw the bills piling up and it didn’t feel like I was making any progress. I felt like such a failure and a burden on my family. I told my therapist about my issues and she looked at me and asked, “Do you stress this much about your student loans? Because that number is a lot larger.” I said no, I’m used to those. She told me, I need to change my mindset about my medical bills. I have a chronic lifelong illness, I am ALWAYS going to have a stack of medical bills. The faster I get past those anxieties, the faster I can use my energy for more productive thinks like actually living my fucking life. 😂 Baby steps y’all, baby steps. . . . . . . . . . #eds #ehlersdanlossyndrome #ehlersdanlos #chronicallyill #chronicillness #hypermobility #hypermobilejoints #hypermobilitysyndrome #pots #posturalorthostatictachycardiasyndrome #dysautonomia #autonomicdysfunction #spoonie #spoonieproblems #spoonielife #disability #disabledandcute #disabled #medicalbills #finances #bills
Went into the city for autonomic function studies last Friday. They came back positive for POTS and negative for small fiber neuropathy. I have not heard from my doctor even though I got these auto-released results on Monday morning. What type of specialist do you see to manage your pots symptoms? Cardiology or neurology? Google says either #pots #potsie #posturalorthostatictachycardiasyndrome #newdiagnosis #nervousystem #autonomicdysfunction #dysautonomia #cardiology #neurology #fibromyalgiawarrior #fibromyalgia #behcetswarrior #spoonie #autoimmunedisease #comorbidity #spoonielife #chronicillness #invisibleillness #chronicillnesslife
These are becoming my new favorite drink! Especially on bad dysautonomia days. The orange mango is my favorite flavor. #spoonie #chronicallyill #chronicillness #invisibleillness #gastroparesis #irritablebowelsyndrome #dysautonomia #posturalorthostatictachycardiasyndrome #inappropriatesinustachycardia
Sudden downpour in Hastings was at least an excuse to stop and shelter for lunch. No difficulties finding a keto friendly meal today... Whitebait, moules mariniere and scallops 😍
This selfie was taken on Monday, I was in a ton of pain but threw on my smile and headed to yoga, where I struggled immensely... but felt so bloody great for giving it my all and smashing it as best I could, not to mention, passing out 20 mins into the session and doing a headstand an hour later in the class.. 💪 • Today, I’m in a very different place, I have a horrific GP flare which I keep refusing to let it win (it’s been three and a half days straight now of not being able to keep down solid foods)..... • This is why I jump, dance, sing and socialise (or just go to yoga!) through these days, I know how unreliable my chronic illness can be and I’m a huge believer in embracing life when I’m able to in any way I can 🤗 • Trying to have a “life” when you vomit every time you move is a different matter, and makes that quite a bit more difficult... • Days like today remind me that I can and do have it worse; I embrace it when I can. 💪 • • • • #thehopefulchronic #spoonie #life #sick #eds #blog #instagood #embracelife
Bit of a blah day healthwise: POTS making everything difficult, hEDS making sure that I dislocate my rib for the 4th time and wake up with limited neck movement, and the brain fog is strong today. •• But hey, I managed to see the chiropractor this morning and get my rib back where it belongs and my neck in place, I've got @dwebbproductions right next to me, and in about 4 hours we'll be in Currituck, NC for some family and beach time!! •• Also, in case anyone was curious about my instinctual picture pose, here's a good example of what I usually do when there is a camera nearby. 😅👉🏼👉🏼
Praise the Gabapentin & TENS unit Gods, I SLEPT! I fell asleep around 1:30 AM & slept straight through until about 6:30 AM.... okay, I can’t say straight through because I remember bits and pieces of being online & found a lollipop stick in my bed, I didn’t even know we had lollipops 😂. But that is part of my sleet conditions. Then I had coffee and breakfast, took meds, put the TENS on my back and went back to sleep at 8:30AM and when I woke up it was 12:30 PM!! Now the crappy part of having the illnesses I do is that getting that sleep does not make me feel better, it’s not exactly refreshing although it may give me a small bump for an hour or so sometimes. BUT if I continually don’t get sleep like I have been, I definitely get worse, physically,mentally,emotionally-they are all linked. So the silver lining lbs of finally being able to sleep are that if the pain isn’t bad it doesn’t follow me into my sleep so I can escape (unfortunately if it’s bad it comes with) and that getting enough sleep allows my illnesses and my emotions to level out. I’m not constantly swirling round and round in a cyclone of suck. One question, does anyone else on Gabapentin get done really strange dreams??
There’s been such an extreme heat wave all over the country recently, it even hit above a hundred degrees here in San Diego last weekend😓! Heat definitely aggravates our conditions & eats up all of our energy - basically making us want to lay like a couch potato until it passes. Check out our newest post on how we’re dealing with these scorching temps {link in bio} 🔥🔥🔥(and yes, those are matching Harry Potter shirts we’re wearing⚡️)
This pic is from exploring old military bunkers on the island of Vieques off the eastern coast of Puerto Rico around this time in 2016. I remember having one of my first of what we now know were ME/CFS crashes in the last few days of this trip. We had no idea idea what was happening, only that it had happened a few times before. Poor Nick, I think, was totally freaked out, but did everything he could think of to help. But there really wasn’t much to be done. . As we wandered the jungle, exploring these massive old bunkers, I remember feeling so small and at times, overwhelmed. It’s a feeling that, I realize, isn’t all that dissimilar from the feelings I’m having now in the face of new symptoms, more doctors appointments, and new diagnoses. They both humbled me, reminding me that I’m not always in control, to let go, to breathe and just be. But oh how vastly different they have felt. . Growing is painful, but also beautiful. And perspective matters. . 📸: @nick_mart101 #bunkerbuster #bunkershot #mecfs #mecfsawareness #myalgicencephalomyelitis #systematicexertionintolerancedisease #tiredfighter #chronicfatiguesyndrome #junglevibes #crashes #chronicillnesslife #cfscrash #humbledbynature #humbledbyillness #growthispainful #growthisbeautiful #perspectivematters #viequesisland #wherethetiredgirlsare
🖤 Care co-ordination 🖤 - New post on blog today, link in bio✨ - Please feel free to subscribe/ send a message/ leave a comment💗
I’m not perfect and that’s okay. I got top surgery and there’s still things I don’t like about my body. I got top surgery and I still have stretch marks; due to binding damage for 8 yrs. You go through a lot accepting your body as a chronically ill/trans person. There’s things nobody tells you. Things that are hard to get used to. But slowly I’ve been learning to love and accept myself. Scars don’t define us, they just show where we’ve been. (P.S. I’m over 2 months post op!! This is what it looks like) ♿️💪🏼💖💙
People always tell me “i don’t know if I could handle being sick.” Or “if I were you, I wouldn’t be able to do all the things that you do.” These things are completely wrong. No one handles being sick. You deal with it. You roll with the punches and try to live your life. Yes, there are days where I’m stuck in bed because I can’t wait due to pain but I’m also motivated to do things that “normal people do.” Sick people are the strongest people you will ever meet. We are so resilient and brave, fighting their body and illnesses every single day. #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #eds #pots #chronicpain #sjorgenssyndrom #fibromyalgia #disability #disabilityawareness
I decided to make a separate account to share things about chronic illness and become an even bigger advocate for disabilites! Hopefully, this account can show that being sick isn’t all it’s cracked up to be and is very, very hard (even though it looks easy.) #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #fibromyalgia #sjorgenssyndrome #ibs #chronicillness #chronicillnessawareness #disabled
After a hellacious week of feeding tube drama and not tolerating feeds worse than my normal (because the J portion of the tube likely migrated upwards when the balloon popped and the tube started coming out), I FINALLY have a replacement. It was technically on the books for noon, but are hospitals ever known to be timely? I can’t wait to be rid of this tape and to have a shiny new functioning tube that will *God willing* last more than 3 weeks!
This wasn't an easy workout day for me... but I got it done ✅ with a little help from my new @gallongear 1/2 gallon jug and badass cover! #dontgetcaughtnaked #gallongear #fitness #fitfam #fightforyourself #posturalorthostatictachycardiasyndrome #pots #fitnessmotivation #gymlife #workout #bodyspartan #sweatdeck
How many of you follow @_itoldyouiwassick_ ? You really need to check her out. She partners her Instagram either her blog & YouTube. The reason that I love her so much is that she is continually thinking up new ideas to support Spoonies, some implemented are: -Mystery illnesses-anonymously send in symptoms, she will post & the spoonie community weighs in based on their illnesses/experiences-I believe this may have led to a diagnosis for one- did it Jamie? -Doctor Bullies-Anonymously send in your experience of being bullied by doctors. This will help raise awareness, all ends up giving support when other Spoonies become infuriated -Advice-Anonymously ask for advice from the spoonie community. -Opioid Crackdown-one that you can do on your own but still a brainchild of Jamie. If the Opioid Crackdown is affecting your ability to get medications to manage your pain and affects your quality of life, share your stories, your pictures and any time you do add #opioidcrackdownvictim
Mama not only got me new shoes (they suck..) but took me to so many places and told me I did super good and listened very well! Apparently I was supposed to go to California with her and her friends, but plans changed and I have to stay here.. Oh well- maybe next time! Until then, there's always more work to be done and more training to gain! Keep on fighting~ - _ ~15 months~ #australianshepherd #aussiesofaz #arizonaaussies #aussiesofinstagram #aussiesofig #australianshepherdsofinstagram #puppy #bluemerle #blazinsunhighhopes #servicedogintraining #servicedog #medicalalert #migrainealert #pots #posturalorthostatictachycardiasyndrome #psychiatricservicedog #cutie #blueeyes #arizona
Sprouts has these Alō drinks on sale! If you haven’t seen my, “Two Great Drinks for Postural Orthostatic Tachycardia Syndrome” on YouTube and see why I love these drinks! Check it out by clicking on the link in my bio description here on Instagram. . . . #alo #alodrink #goodforyoufood #sproutsfarmersmarket #naturalfood #posturalorthostatictachycardiasyndrome #sjogrens #refreshingdrink #hydration #rehydrate #nongmo #glutenfree #fatfree #noartificialflavors #noartificialcolors #juicedrink #juicediet #aloevera #aloeveraplant #alotones #goodness #greatprice #tastesgood #sprouts
Good morning! My makeup is smeared all over my face (sparkles everywhere). I didn’t have the energy last night to wash the makeup off my face. I’m feeling super wiped today and in a decent amount of pain but I’ve got plans so I gotta just deal with it. ... #posturalorthostatictachycardiasyndrome #pots #ehlersdanlossyndrome #ehlersdanlos #eds #ehlersdanlosawareness #chronicillness #chronicpain #anxiety #depression #ptsd #mentalhealth #mentalhealthawareness #mentalillness #mentallydrained #mentalhealthawarenessmonth #youtube #youtuber #youtubevideos #disabilityadvocate #mullet #nosering #piercing #stretchedears
Yesterday I had an appointment with a new primary doctor and it went really well. I get such bad anxiety with new doctors due to bad experiences so I was beyond relieved that this one was so amazing. I finally got the referrals I needed and now we can hopefully get my migraines under control and my gi issues figured out. . . . 🌺Check out my pawtners🐾 @cupidtheaustraliancattledog @superman_samson @winnie.theservicedog . . . Want to be pawtners? Just ask! 💞 . . . #servicedogs #serviceanimal #servicedogsofinstagram #servicedog #servicedogintraining #sdit #sd #chronicillness #psd #psychiatricservicedog #ptsddog #mobilitydog #POTS #invisibleillnesses #tasktrained #dogtraining #rawfed #posturalorthostatictachycardiasyndrome
A few weeks ago I stopped wearing my fitness tracker other than when exercising. I’ve written a little blog post on my reasons for replacing my tracker with a simple watch. Hope you enjoy it and find it useful! . #fitnesstracker #fitbit #watch #fibromyalgia #pots #eds #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #migraine #headache #vertigo #vestibular #chronicmigraine #chronicheadache #raynauds #ic #interstitialcystitis #mcas #mcad #mastcellactivationdisorder #chronicpain #chronicfatigue #chronicillness #invisibleillness #spoonie #health #dizzy #balance
This is a deer, it was far away but Damon noticed it. So he barked once and then watched them in a watchful stance (not an attacking one but an alert and watchful). I’m so proud that he was quiet so I could this really bad photo 😂😂 . 🥄 🥄 🥄 🥄 Visit my Pawtner! 🐾 @sammy.the.service.dog 🥄 🥄 🥄 Do you want us to model clothes/gear or test a product? Dm us to set it up! . 🥄 🥄 🥄 Want to see more of us? Link tree in my bio! . 🥄 🥄 🥄 🔲TAGS🔲 #servicedog #servicedogintraining #sdit #servicedoghandler #EDSwarrior #elhersdanlossyndrome #potssyndrome #posturalorthostatictachycardiasyndrome #ptsd #anxiety #bipolardepression #mobilityservicedog #psychiatricservicedog #ptsdservicedog #tasktrained #chronicillness #🥄 #invisibleillness #dogsofinstagram #dogmodelsearch #spoonie #goodboy 🐶 #workingdog #respectthevest #dogmodelsearch #chewy #doberman #dobermanpuppy #dobermanpride
👉 Chronic illness can be earth shattering, soul sucking, heartbreaking. It breaks us down, and builds us up. It tests our will power and our strength. It pushes our bodies past their limits, and shows us our ability to survive time and time again. Those limits? They’re not comfortable. That surviving? isn’t easy either. But it’s not a choice we’re given, but rather a life to be had. One we may not want, but one we have. The good, the bad. The raw, the real. The truth, the triumphs. I don’t know how we do it, but we do. And here we are surviving what feels impossible. Surviving despite it all. . #mood #lifegoeson #hanginthere #yougotthis . . . . . . . . . . . #chronicillness #youarenotalone #nevergiveup #keepgoing #chronicpain #chronicallyill #invisibleillness #mentalhealth #ehlersdanlos #EDS #potsie #potssyndrome #dysautonomia #crohns #crohnsdisease #crohnsandcolitis #IBD #ostomy #ostomate #spoonie #migraine #fibromyalgia #mastcellactivation #inflammatoryboweldisease #gratitude #posturalorthostatictachycardiasyndrome 📷:Google
Today is my first swim since my EDS diagnosis! It’s been a nice few weeks off, to reflect and think of my next steps. ♿️I am still pursuing getting classified for Paralympic swimming. Since my EDS is not a classifiable impairment, but my spinal cord myelopathy and limited range of motion/muscle power are. 🏊🏻‍♀️My doctor told me to start off with only 30 minutes practices, and to increase 10% every two weeks. Today I swam a 1,500 straight, 100free 100back 100IM drill. Slow and steady!
These are the medical supplies I’m bringing with me for a weekend trip, not including my water bottle, everyday heart rate monitor and charger, or hand sanitizer. About half of this is in my backpack every time I leave the house. #chronicillness #chronicfatiguesyndrome #myalgicencephalomyelitis #millionsmissing #posturalorthostatictachycardiasyndrome
Hi all, I’m sorry there hasn’t been a update for some time (to those who have been wondering). I have been very unwell, there’s still no improvement and after a extremely long day in London Tuesday, I have been diagnosed with something else...Ehlers-Danlos syndrome (EDS). I need a LOT of tests and see a lot of specialists, he said I’m extremely sick...(like I didn’t know that, ha!). One important test costing £1800! Which cannot be done on NHS, it’s only done privately in two places in the whole country, London and Manchester. But is essential I get it done because I may need surgery to fix the problem if something shows up, this could be life changing for me in some ways (neck pain and neurological wise). He also wants me to see a new POTS specialist privately - understanding of EDS etc, but he said once I’ve seen him I can then go to a specialist clinic (all on the nhs) for 2-3 weeks in London to be assessed, get treatment for something... I can’t remember what exactly (not Lyme related) but still it was all to try help me, I’m still exhausted and it’s all a bit of a blur. He just kept saying, wow you have a lot wrong, gosh you have a lot and seemed shocked how many problems I had and how much I needed fixing. Especially for my age. Anyway this is all on top of Lyme treatment we have to pay for, for Mum and I. We also go back to America to see our specialists very soon. So any help you can give is much appreciated, thank you so much. (I hope this makes sense, not in a good way and extremely fatigued) My Lyme specialist mentioned if I were to have EDS it’ll make treating Lyme even more complicated. So I really need to try raise as much money as possible. Anything you can do to share this page so I can try to raise as much money as possible is much appreciated. Many thanks and thank you so much to those who have helped me and donated so far! Anyone can donate anywhere in the world 🌎 Link to my fundraiser is in bio also 😊 Sarah x https://www.gofundme.com/sarahschroniclymediseasefight
next page →