#eds

Girls night, "Rock Of Love" party. Watched Rock of Love, played game where you pick sucker, then flavor you got, look and see what your Rock Of Love name is! Food, drinks, laughs.
#goodfriends #greattimes #lovemygirlfriends #girlsnight #rockoflove #edsnotstoppingmetonight #edsgirl #eds #heterochromia #nevertooold #sillygirls #girlsjustwannahavefun

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👀 I spy a Lulu! 😍🐕♥️
My sweet cuddle bug is ready for bed and so am I! I wish you all a restful night with minimal symptoms.. goodnight, my friends. 💛🌙✨😴
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#chronicillness #chronicpain #ehlersdanlossyndrome #hypermobility #hypermobileehlersdanlossyndrome #mastcellactivationdisorder #mastcellactivationsyndrome #posturalorthostatictachycardiasyndrome #eds #heds #pots #mcas #mcad #tmj #anxiety #spoonie #zebra #blogger #dogsofinstagram #bostonterrier #pug #bugg

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Every night I look forward to my skin care routine, I usually do a mask (tonight is a great one I use once a week that I got from TJ Maxx!) And I try to treat my painful joints to a bath at least once a week as well. Just a little self care can improve your overall outlook on life soooo much. -
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#selfcare #skincare #skincarejunkie #skincareroutine #teatree #teatreemask #facemask #facemasktime #beautyroutine #beautycare #heathandbeauty #healthyskin #health #happyskin #bathbomb #dollarbathbombs #rose #rosebathbomb #lupuswarrior #lupus #lupussucks #chronicallyfabulous #chronicillnesswarrior #chronicpain #chronicillness #eds #ehlersdanlos #ehlersdanlossyndrome #jointpain #jointproblems

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Indeed. My heart is hurting beyond belief. I truly feel broken. Thank you @aspoonfulofcyanide for sharing this with me. #brokenheart #heartache #grief #spoonie #zebra #eds #rupikaur #beautifulwords 💔💔🌹🌹

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When I walk around without my cane, limping slightly, with my knee brace, I’m invisible among the crowd of busy people going about their day. But a 20 year old with a cane gets looks. Always. I get stares which make me wish I could crawl back inside myself and disappear. It’s usually confusion, but I’ve learned to recognize the way pity looks almost as easily as one can see a smile. I only use it on bad days, or when I have to walk very far. Because it does hurt my shoulder a lot, and HSD/EDS doesn’t care if your bad leg and bad shoulder don’t want to get along.
#hypermobilityspectrumdisorders #ehlersdanlossyndrome #invisibleillness #zebra #spoonie #cripplepunk #cpunk #eds #hsd #hypermobility #spoonielife

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I went to the barn today with Mom and my little sisters!! We played with horses, ate manure and grain, and ran ran ran!!! 🐎 Best day ever!! 🐾💖
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🍩⭐️8 months⭐️🍩
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#ServiceDog #ServiceDogInTraining #WorkingDog #DogTraining #Spoonie #NotAllDisabilitiesareVisable #ChronicIllness #EDS #POTS #Fibromyalgia #CSS #GoldensOfInstagram #GoldenRetrieversOfInstagram #GloriousGoldens #ILoveGolden_Retrievers #GoldenRetriever #GoldenRetrieverPuppy #GoldenPuppy #ServiceDogsOfInstagram #SDIT #PuppyDog #PuppyLove #Puppy #PuppiesOfInstagram #InstaPuppy #DogsOfInstagram #InstagramDogs #ILoveMyDog #HappyDog #BarnDog

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One day i want to make a difference in the world of invisible illnesses. If you were to see me today you would never know how sick i was. But i wouldn’t change my life at all💕 #invisibleillness #invisibleillnessawareness #crohns #eds

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I made it out today to see @blackpanther and I brought my Basotho blanket with me. I was impressed with how well the film represented different elements of a lot of diverse African cultures and I found myself getting choked up at seeing Basotho culture represented on the big screen.
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That mountain kingdom still has a big piece of my heart. I’m gonna beat #lyme and #myalgicencephalomyelitis so I can make it back there one day! 💪
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#lymewarrior #mecfswarrior #lesotho #basothoblankets #blackpanther

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Just had a very long week having another ketamine infusion 🏥 I really am over being sick, I just want to be a normal, healthy 23 year old 🌸 #chronicillness #ketamine #infusion #gastroparesis #cipo #eds #pots #struggling #longweek #withdrawl #tough #imtougher #bossbabe #igotthis #warrior #selfie #beatssolo3 #braids #onestepatatime

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We went to target today and it was quite the adventure!
Beware of long caption 😂
On the way inside we had a guy walk ACROSS the street to come up to me and Shiloh. This is how it went:
Guy: “cute dog”
Me: “thanks”
Guy: “can I pet her?”
Me: “no, she’s a service dog. You cannot pet service dogs”
Guy: “..... can I pet her though?”
Me: “no? She’s a service dog. You cannot pet her. It could distract her and cause her to miss an alert”
Guy: “oh, well.. is she you’re service dog?”
Me: “yes”
Guy: “what does she do?”
Me: “she’s my medical alert and mobility service dog”
Guy: “no like, what’s wrong with you”
Me: “ummmm that’s personal and very rude to ask”
Guy: “ohhhhhhhhh”
He finally walked away while we were waiting for cars to pass so we could walk in.
After walking in, we had lots of people trying to call her over to them and lots of children trying to pet her. Some parents were very knowledgeable and even made their kids face away from Shiloh and me telling their kids that she was a service dog and that you should never stare at or pet a service dog. Bless those families that did that. 😂
Well, enjoy the really cute pictures of Shiloh and an Easter bunny, and of course you can’t go to target without taking a team picture in the mirrors. Also.. excuse the lazy recall she had today(and me saying “you’re so lazy” 😂) as well as her lopsided vest.. she was tired from playing at home and at the pet store before hand.
I’ve also been working more with her on heart rate alerts and she did one at the store!! I was so happy. I’ll try to get so of those training videos up too. -
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#servicedog #serviceanimal #chronicillness #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #eds #dysautonomia #OI #invisibleillness #disabled #disabilityawareness #gp #greatpyrenees #tasktrained #medicalalert #chronicpain #chronicfatigue #spoonie #spoonielife

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Want the real deal? Buy Young Living, nothing fake about them.
#malcolm #momofboys #boymom #edsfighter #eds #oilsforeverything

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🤷🏼‍♀️ every. time.

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This is part of my life... Some days are good and I feel like I can accomplish anything! But then I have days....weeks...sometimes months where I struggle to my shoes tied but I keep pushing! #spoonielife #eds #ehlersdanlossyndrome

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Earlier today for the first time ever my pump started beeping with an "upstream occlusion." The ER and hospital pumps were constantly beeping with one (the fluids and benadryl ones liked to take turns every half hour last week), but never on this pump. It also said it had a low battery earlier even though it didn't, so I'm a little worried about it... 😬 Also shout out to this dog for all the cardiac alerts earlier today when I stubbornly refused to lie down. #caddpump #ivfluids #technicaldifficulties #mastcelldisease #dysautonomia #ehlersdanlos #hypoglycemia #medicallycomplex #raredisease #chronicillness #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #EDS #pots #servicedog #goldendoodle #medicalalertdog #mobilitydog

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Facetiming with Jazzy is something I love I’m so blessed that the Mighty published my article becaause that is how I met Jazzy and everyday sincd we talked for the first time has been amazing!!! I love her!! @p0sitivity #bff #thankyou #thisisus #positivevibes #beautiful #spoonie #themighty #love #spooniefriends #fop #eds

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This is 32. Look like I'm 20, feel like I'm 80. #fakeittillyoumakeit #eds

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#EDS is technically a rare disease but I believe that’s because it’s under-diagnosed. I went 35 years before shining a light on my chronic pain and bizarre allergies. I’ll be showing my braces and my zebra scarf this week. #rarediseaseday #ehlersdanlossyndrome #mastcellactivationdisorder

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A little bit of make up!
My bells palsy is around 70-80% better but still can't smile fully! I'm exchausted! But feeling beautiful today!! 😘 a little bit of makeup can hide a lot 😉 But sometimes its nice to treat yourself!
#pinup #inkedwomen #tattedgirls #inkedladies #piercings #glasses #tattooedgirls #womenwithink #brighthairdontcare #alternativebeauty #chronicallyill #eds #posturalorthostatictachycardiasyndrome #hypermobility #hypothyroidism #gastroparesis #asthma #depression #mentalhealthawareness #spoonie #cripplepunk #bellspalsy

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Sometimes I think people can get confused. I’m not a negative person, terribly sarcastic and dark but not negative. Being honest about my day, the fact I did nothing, the pain I feel and that I feel that sometimes life is unbearable doesn’t mean I’ve lost all positivity. I have some real good in my life and I’m aware I’m extremely lucky and have what some others don’t and that is something I don’t ever take for granted. Acknowledging that I’m a in shit position and honestly no 28 year old wants to be crying in pain and frustration because they are stuck in bed but hey here I am and I try and deal with it in the most honest way. Some people don’t understand that and they’d probably do it totally different and that’s fine too. You do what you gotta do to live your life, I respect that. Just respect me, that’s all I ask.
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#eds #ehlersdanlos #edstype3 #ehlersdanlossyndrome #sublaxation #sublax #zebrastrong #zebra #chronicillness #chronicillnesses #pots #dysautonomia #potssyndrome #posturalorthostatictachycardiasyndrome #migraineawareness #chronicmigraines #migraines #butyoudontlooksick #snapkracklepop #jointpain #pain #chronicpain #degenerativediscdisease #discdegeneration #spoonie #spoonieproblems #spoonielife

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First dance show of the year. This girl loves dance. #eds #dance

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Part1
昨日のスクールゾーン楽しかった!
もしかしたら、最後かもって思うと、、結構寂しいけど、、10年間ダンス続けて沢山の人と関わって沢山のダンスを習って一言で言いきれないくらい思い出がいっぱい😂EDSの先生である将太くんとジョンくんにはほんとに感謝してる🙇🏻‍♀️これから、違う形で何か恩返しできたらいいな。一緒にチームを組んだTight Peepsの銀ちゃそとふぅちゃそにも感謝してる!2人のおかげで考え方とか色々変わった!!
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#DANCE
#EDS
#TightPeeps
#enjoyed
#感謝
#長々とすみません

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Today was one of those days that I knew I was handsome and I was working the camera and loving the nice weather...until the last picture 😝

#sheltie #servicedog #crohns #eds #pots #handsome #derp #tongue

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When you get up for a second and someone snatches your hammock!
#sheltie #servicedog #crohns #eds #pots @dogsofslu @slu_official #hammock #mine

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