#spoonielife

Instagram photos and videos

#spoonielife#spoonie#chronicillness#chronicpain#invisibleillness#fibromyalgia#autoimmune#spoonieproblems#disability#chronicfatigue#spooniewarrior#autoimmunedisease#anxiety#migraine#potssyndrome#cfs#chronicpainwarrior#spooniestrong#lupus#dysautonomia#pots#butyoudontlooksick#pain#ehlersdanlossyndrome#gastroparesis

Hashtags #spoonielife for Instagram

💉🐼✍🏻Mañana empiezo la nueva terapia y estoy nerviosa. Además llevo varios días con dolores y “drogándome” con Tramadol... que me hace sentir cansada todo el tiempo.
Esta noche he estado escribiendo un poco, ayuda con la ansiedad y a veces me sirve como inspiración para ilustraciones.
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#writing #panda #bear #plush #teddybear #cute #kawaii #vsco #vscocam #vscodaily #hujicam #huji #afterlight #spoonie #spoonielife #autoimmunedisease #chronicillness #chronicillnesswarrior


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I have felt like garbage all day today and most of yesterday, despite my best efforts, and it's really kicking the shit out of my mental health. But at least I have a cuddle nug. #ifeelalittlebad #2 #selfie #tuesdaynight #vibes #stitchthecat #spoonie #spoonielife #catstagram #furmom #furbaby #shessnoring


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I wanna follow more inspiring, motivational, gorgeous souled people on here! People with depth and compassion, If your favourite Chronically Ill Instagrammer sounds like this comment below so I can follow them too, Or if this is you do the same also! Bonus House points if they’re/ you’re a Chronically ill blogger!!! I love reading blogs! 😗💚💚💚









#spoons #lush #chronicallyill #happy #hobby #spoonie #spoonielife #friends #goals #motivation #spoonies #spoonieproblems #illness #illnesses #adore #motivational #inspiring #inspiringpeople #depth #compassion #soul #primark #instagrammer #blogger #instagram #instagram #blogs #harrypotterforever #harrypotter #preach #slytherin


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Video of our cat Shadow, aka “Chub Chub” or “Lil Guy” playing with an empty @pukkaherbs #bedtimetea box. Excuse the music in the background, I always listen to music pretty loud to compensate for hearing loss in my left ear. I was rearranging my tea drawer and Shadow decided he loved the #pukkatea box. Crazy cat! #pukkatea #crazycat #catapproved #catsofinstagram #shadowcat #chubchub #spoonielife #myazlife #audlife


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Soak 1 cup Cashews in two cups water overnight .
Add to a stock pot:
Bunch of Asparagus
1 Red Onion
5 Cloves of Garlic
1 Bag of Frozen Peas .
Cook on Medium heat until everything is tender .
Remove from heat .
Put asparagus, onion, garlic, peas, soaked cashews with water, and fresh basil to blender and puree! .
Yummy Detoxing, Delicious. .
Want more recipes and start making Health and Wellness a Party. Here's your VIP Invite in the BIO! . . . .
#scienceofone #stopdraggingit #nutritioncoach #fibrofighter #nutritionalhealing #healwithfood #antiinflammatorydiet #autoimmune #invisibleillness #chronicillness #spoonielife #foodasmedicine #vegan #vegetarian #chronicfatigue #fibromyalgia #glutenfree #paleo #paleolife #healwithfood #guthealth #increaseenergy #eattherainbow #plantbased #fibro #cleaneating #foods4thought #ahealthynut #fatigue #eatyourgreens


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Redefine. That is a scary thing to do. Why? We get so used to being in our little bubbles, and that familiar feeling of who we think we are to ourselves and the outside world. But what happens when we're forced to change that frame of mind? What happens when you no longer fit into that bubble you grew so used to? Change happens, growth happens, Awakening happens. Redefinition is scary. But in the dark times, we find light. We find our true selves and what we are here for. We get the rare chance to connect with our inner truth and what the world has planned for us. This is not to say redefining yourself isn't difficult, scary and a hell of a process. But it's a process I sure am thankful for as I take each step closer to who I'm meant to be.


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😬🤯”Sensory overload occurs when one or more of the body's senses experiences over-stimulation from the environment. There are many environmental elements that affect an individual. Examples of these elements are urbanization, crowding, noise, mass media, technology, and the explosive growth of information”. - Does anyone else get this kind of thing with too much sound or light or anything? When I’m at my worst I can’t have one person talking to me without feeling terrible and I can’t focus on anything cause it’s all too much. #yourachingart #myalgicencephalomyelitis #meawareness #overwhelmed #exhausted #chronicillness #chronicillnesswarrior #chronicillnessawareness #chronicpain #chronicpainwarrior #chronicfatigue #chronicfatiguesyndrome #irritablebowelsyndrome #ibs #anxiety #spoonie #spoonielife #chronicillnessproblems #mesymptoms #thoughts #feelings #emotions #relatable #relatablegif


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I am so bad about calling Dakota his real name. 😂 His regularly used names are doodle, doodlebug, oodlebug, doodlebutt, oodle doodle, doodle oodle oodle, cutiepie, cutie oodle, cuddlebug, kota, baby, babydoll, fussypants, and stinkbutt. It's not just him though. Tkitty's real name is Targaryen and he also goes by kittykitty, best boy, stinkbutt, and babydoll. Mila is Mila Mila, Mila princess, princess, babygirl, and pretty lady. Hickory is monkey. Spice is Spicegirl, babygirl, and Spice Spice. Dewey is Dewey Dewey, Dewey monster, munchkin, and Dewwwwwey. Jinx is jinxy, princess, pretty girl, and babydoll. Norbert is dude, Norb, man, my man, main man. Count is also main man, my man, and dude. Isis is pretty girl, big girl, beautiful girl, and princess. Darwin is little dude, little man, and D-man. And our house guest Ka'ge came with the best nickname - The Beast. Serious identity issues up in this house. 😂. What do you call your critters?
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#spoonie #spoonielife #chronicallyill #chronicillness #POTs #potsie #eds #edszebra #ehlersdanlos #ehlersdanlossyndrome #chronicpain #ehlersdanlostype3 #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #hypermobility #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #gastroparesis #dysautonomia #sdit #servicedogintraining #servicedog #servicedogteam #labradoodle


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We all have fight in us, never underestimate your strength. We have the power to overcome whatever life throws our way, sometimes we may need encouragement to keep fighting. Don’t be afraid. Just like any boxing match there are rounds. Just because you lost one round doesn’t mean you lost the fight. -
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#spooniecommunity #spoonielife #ibdawareness #invisibleillness #inflammatoryboweldisease #ulcerativecolitis #colitis #crohns #crohnsdisease #invisibledisease #lupus #lymedisease #asthma #cysticfibrosis #endometriosis #anxiety #adhd #staystrong #happy #mentalhealth #bestrong #getup #guthealth #quotesaboutlife #chronicpain #chronicallyill #loveyourself #butyoudontlooksick


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Thinking about these gorgeous flowers, from a couple of months ago, given to me in a rough time! There’s a new update on my journey, link in bio go check it out 👆🏻#spoonie #spooniestrong #spoonieyoutuber #spooniewarrior #spooniesisterhood #smallyoutuber #smallyoutubearmy #smallyoutubechannel #smallyoutubercommunity #smallyoutubesupport #vlogger #spoonievlogger #vloggerlifestyle #spoonielife #spooniefamily #spoontheory


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I say I'm fine cause it's too exhausting to explain how I really feel... 😞 I fell today at work. In a patient's room. Not good. But thank God no one saw. And most importantly that I wasn't with the patient when it happened!! #spoonielife #imfine #notfine #chronicpain #chronicillness #spoonie #suffering #invisibleillness #invisiblefight #onedayatatime


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Did you know I’m a @younglivingeo distributor? 🙀
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Did you also know that lavender oil is not only great for peaceful calm atmosphere, it’s also great for cuts, bruises and in my case tonight, sunburns! 🤦🏼‍♀️
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There is hundreds of different oils out there but all are so beneficial for your health, great aroma and cleaning purposes! 🌱
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Oils really help me and my #spoonielife! 🤓
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#youngliving #younglivingessentialoils #essentialoils #oils #lavender #lavenderoil #sunburn #benefitsofoils #yldistributor #spoonielife #spoonieproblems #autoimmunedisease #rheumatoidarthritis #betterhealth #journeytohealth #journey #autoinflammatory #nature #natureistherapy


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Things have been rough with my health lately and I don’t know why. I’ve been eating more plant based foods, more bananas, drinking tons of water and really trying my best to avoid trigger foods. However, life has been nonstop for a week now. Constant on the go and will be like this until the end of the month. Here it is only 8:45pm and I’m barely hanging on. Feels like it’s midnight! I thought I was in remission but we all know #colitis strikes when it wants to! Started an hour before I had to leave for a work event today. Took all I could to smile and be peppy while chatting to vendors. Gut pain all day... ugh!!!!! I guess colitis has its own mind! #colitiswarrior #colitissucks #exhausted #guthealth #gutissues #spoonielife #spoonieforlife


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#PSA: Diamonds are not, in fact, a girl’s best friend 💎 sorry Marilyn 🤷🏻‍♀️
This pill cutter is honestly THE BOMB. I no longer look like a scheming slasher/murderer disappearing into my room at random times with our biggest, sharpest kitchen knife 🔪 AND it actually cuts my pills in half.
Actual. Halves.
ACTUAL. HALVES! Two even pieces!!
It doesn’t shatter them into 7 blatantly uneven misshapen pieces!
Thank you, medicine gods, for bestowing such wonders upon this sick girl 💁🏻‍♀️🙌🏻
Best tenner I’ve ever spent 👌🏻
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#grateful #spoonielife #sickgirlsclub #sickgirl #pillcutter #godsend #thankyou #diamondsareagirlsbestfriend #NOT #migraineawarenessmonth #migraine #anxiety #depression #ibs #arfid #antidepressants #chronicillness #chronicpain #invisibleillness #mentalillness #painslayer


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‼️UPDATE‼️ Well we are slowly transitioning to a clear liquid diet (with little success) we got the pain and nausea under control for the most part. Best part of all though is that I found out that there is a doctor here at UNC now that does the TP/AIT surgery that I have been trying to get done for almost 5 years AND I’m getting a referral to go see him so Lord willing we might be able to get this surgery done and I can take the first step into having a semi normal pancreatitis free life.
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#BecomingTheBuchanans #spoonie #tubie #pancreatitis #anemia #chronicallyfabulous #chronicillness #gerd #gastroparesis #cure #awareness #butyoudontlooksick #invisibleillness #depression #anxiety #spoonielife #selflove #bodypositive #acceptance #confidence #beautiful #bpd #inpatient #psychhospital #recovery #recoveryisworthit #engaged #hospital #married #unc


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As a chronic illness warrior, I don't think you'll ever be prepared to hear the words, "You're illness is progressing at a rapid rate!"
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Here I am trying to exercise and eat properly to feel better living with this disease and I'm getting worse!!! What kind of shit is that?! How is that even fair???
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I'm broken! I'll never be normal. My body has let me down!!! I held my end of the bargain. But for what...THIS!!
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Until now, I always believed I could stay ahead of this illness! Feeling good most of the time, hardly any flares and I would be fine. Today I learned I learned I was too optimistic.
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I didn't ask for this disease. I don't want it!!!! Life isn't fair sometimes.
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Today I'll grieve my news, tomorrow and the next will be another day. I will figure out how to fight back harder and kick fibro's ass and I WILL NOT ALLOW IT TO WIN!!!!


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I work, but this is for colleagues who ask me why I don't go to more meetings and tell me I should be "more actively involved" in meetings. #boybye #girlbyetoo #cancerlife #spoonielife RP @jeji_kintsukoroi


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Guess whose back?!🤙🏼 I drove 45min to get my blood draw, only to be told I’m a month early. 🤦🏼‍♀️ #brainfog ya’ll! //
My body has not been happy with the travel, transition, and work stress. 🤪Thermoregulation is on the fritz, vision deteriorating, and my skin feels super crawly. I need a vacation 😂
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I gotta slow down, do some body reset, take a detox baths, and let myself relax a little. I’m up against quite a few deadlines for work ... and I know stress crashes me faster than anything else! //
#useyourtools #lymedonthavetokillmyvibe #lottashouldsrightnow #welcomeback #canigoback #spoonielife #wheresmybraintho #healingchronicillness #onestepatatime #cfsstrong #invisibleillness


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🦋🌞💐 KEEP BLOOMING AND FOLLOW @aa.volkova
"Не люблю цветы, но это просто невероятно красиво 😍 "
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Click the link in our bio to join us on the Mighty Network for an amazing, private space that we can build and grow in together! 👋😀💓🎉


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I was going to do water aerobics tonight, but with work and home both being super demanding, I hit a wall this afternoon. I was suddenly nauseous and felt a migraine coming on. So I listened to my body, made some low-sodium chicken soup, brewed some ginger tea, and watched HGTV while doing modified yoga poses with my yoga blocks.
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Like I’ve said before, and will say over and over again on this account, going slowly is not giving up. If I had “pushed past the pain” and done a full workout today, tomorrow I would have felt even worse, which could have spiraled into a month long bad flare. The key to fighting fibro is to challenge your body, but don’t over do it. With chronic illness, slow and steady wins the race.
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#chronicpainhealth #chronicpain #chronicillness #chronicillnesswarrior #fibromyalgia #fibrofighter #fibrofitness #listentoyourbody #selfcare #chickensoup #gingertea #healthylifestyle #healthyeating #loveyourself #spoonie #spoonielife


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MEET & FOLLOW @trishnabharadia 🦋 "Last week marked the ten year anniversary of me being diagnosed with #MS #multiplesclerosis TEN YEARS?! Where has the time gone? It's been a crazy journey since then with lots of ups and downs. In my latest #vlog (as well as battling with a rogue spider 😂) I reflect on what happened that day, what's changed since then and what's stayed the same. Most importantly, there's some shout outs and thank you's to those of you who have supported me along the way - including all of you who follow me on social media 💖 Full vlog available on YouTube via link in bio!" @trishnabharadia


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My stock answer to doctors who comment on how upbeat I seem to be despite all the stress in my life...


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There was a time when Lupus made me have a wicked side pixie. #lupussucks #lupusstruggle #lupusstrong #spoonielife #sidepixie #inkedandproud #inkedgirls


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"I tell people about this podcast because I want those who #battle chronic #illness to know that there are others living with amazing #strength and #courage." #NWIOpodcast #listenerlovenotes

This Is Not What I Ordered: a #podcast on full-hearted living with #chronicillness + #health challenges.

Link to listen in bio <3

#selflove #spoonie #spoonielife #chronicallyawesome #sickbutinvisible #injury #disability #spiritual #selfhelp #humor #chronicallychill #autoimmune #chronicwisdom #spirit #encouragement #interviews


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I'm so proud of them. Most companies would have let our pleas fall on deaf ears! @theweedboxcompany did not. For this, they have my full support. This is a company that TRULY wants to succeed and is run by genuine people. I applaud them for speaking out on the situation when many would simply stay silent and hide in the shadows. Good for you. 💚 #karmaisabiggerbitchthaniwilleverbe #girlsthatsmoke #its420somewhere #chronicpain #depression #anxiety #cerebralpalsy #spoonielife

Regrann from @theweedboxcompany - We would like to announce that Jane Dro no longer is affiliated with The Weed Box. Her exit from TWB was May 11th and she will not be returning. Thank you to everyone for your support and love! - The Weed Box - #cannabis #weed marijuana #theweedbox #420 - #regrann


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My rheumatologist kindly sends me home with a list of my diagnosed conditions (not all of them, only the ones he deals with) after every visit. Cause you know....I needed a reminder 🙄 #spoonie #spoonielife #spoonieproblems #cheonicillness #chronicillnesswarrior


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My god it's wonderful to feel the sun
#spoonielife


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This sadly actually happened to me (but with 3 days instead of 2). I had to go back to the doctor and get a note for 3-days, 8 hours each. Even my doctor was like WTF???
It is so difficult to work and be ill. People don’t realize the added stress of trying to deal with leave, disability or medical policies. It makes getting your hours in even harder. I can no longer work so I can laugh about this now but it was truly frustrating when I was in the middle of it! Anyone else have work- disability frustrations???
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#disability #disabilityawareness #disabilitysupport #pots #potssyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #comics #comicstrip #darkhumor #darkmemes #autoimmunedisease #spoonielife #spooniefamily #spooniesunite #spoonie #autoimmunedisease #autoimmune #lymewarrior #lymedisease #lyme #companyculture #eds #ehlersdanlossyndrome #potsie #warriors #autonomicdysfunction #invisibleillness #hiddenillness #migraine


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Wanna win a $100 shopping spree to our shop? We know you do. Click the link in our bio to enter the giveaway!
-KC
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🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio.
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#TheUnchargeables #Spoonie #Chargie #ChronicInsta #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #raredisease #butyoudontlooksick


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It’s hard to be friends with someone who is always sick. A chronic illness comes with more than just physical symptoms, there are also many emotional aspects to it l that leave us mentally all over the place.
At times we want to be left alone and at times we wish we had company. It’s probably exhausting to our friends to figure out what we really want and when. But if you’re a friend that still checks in, still tries to make plans and still listens to the same complaints and issues over and over again, then you’re a true friend; we may not always show our appreciation and the friendship may appear one sided at times, but just know that your friendship means a lot. A lot a lot. ❤️ #regram from @lovelyspoonie_ 😘
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#beautyblogger #beautyguru #beautyblog #bblogger #bbloggers #skincareblogger #skincarejunkie #skincareaddict #skincareluxury #makeupblogger #makeupblog #makeupbloggers #chicago #chicagoblogger #chicagobloggers #chicagogram #chicagogrammers #windycitybloggers #windycityblogco #dogmom #chihuahualover #butyoudontlooksick #lookgoodfeelgood


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When you go through your greatest struggles you will find your greatest strengths
The biggest lessons are often found in the toughest of circumstances
No matter how bad this gets no matter how dark this gets no matter how painful this gets no matter what is thrown at me .
I won’t back down I won’t stop. I will keep fighting. No matter what I will fight through the ever deepening darkness and follow the light of hope.
#care #help #hope #life #love #health #support #friends #family #nevergiveup #nurburgring #motorcycle #crash #survivor #3d #printing #chest #titanium #reconstruction #surgery #lifechanging #spoonie #spoonielife #chronicillness


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I know a snail might seem like a strange pet, but Auggie is my bestie. He enjoys beet greens and long walks along my forearm. He’s a little sluggish in the mornings but I don’t hold that against him 🐌
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#snail #snailsofinstagram #spoonie #spoonielife #lymedisease #lyme #pots #potsie #potssyndrome #autoimmunedisease #autoimmune #chronicpain #chronicillness


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Just made some bread for tomorrows picknick. I've got a lot to do the next few days, but with 2 picknicks planned I will also get some relaxing in. Although they require work too... but any decent meal does, so I'm probably making a bigger deal out of it than it is.

As much as I am dreading the work that comes with it, I'm really looking forward to getting my new pantry cupboards. Unlike what they're replacing they nicely fill up the space, and I'll finally be done with the saggy drawers!

#spoonie #spoonielife #spillingmythoughts #restlessspoonie #restless #insomnia #restlessmind #homemadebread #picknickfood #food #spooniemealprep #mealprep #foodprep #healthstruggles


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My friends and family and followers with an invisible illness, this is the perfect magnet!! Repost @spoonie.kate
by @media.repost:
Got more gear from @theunchargeables! My new car magnet is the perfect thing to point to when people are being jerks about the fact that I have a handicap placard but “look healthy”. It’s also much nicer than responding to the “you don’t look sick” comments with “well you don’t look stupid, but appearances aren’t everything” 😉#invisibleillness #notallillnessesarevisible #chronicillness #carmagnet #pots #eds #gastroparesis #lupus #chronicpain #painwarrior #chronicmigraines #raynauds #zebrawarrior #disabilityswag #spoonie #spoonielife #advocate #morethanmeetstheeye #disability #chargie #theunchargeables #butyoudontlooksick #invisibleillness


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Stuck? Lately in my Facebook group we've been talking about roadblocks, the ones that are external and the ones that we sometimes create ourselves. When you feel like you can't do anything, reach out. Sometimes a fresh set of eyes is all you need in order to find a breakthrough. Want to join the group? It's called Life with Lyme + other Chronic Illness. There are all kinds of classes, coaching and support going on in there each day. I teach as much as I can and you're free to post all the questions you have. Happy Tuesday!


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The upcoming days are going to be incredibly busy, so I've been in a planny mood for days. Today I finally managed to write out a meal plan and to do lists for the next 4 days. Since I took this picture of my meal plan I've already made some adjustments and I doubt they'll be the laat, but at least I won't HAVE to think about it anymore. I'm looking forward to the 2 picknicks we're going to have.

#spoonielife #spoonie #spooniemealplan #busyspoonie #spoonieplanner #imalreadytired #imalreadyexhausted #spooniewithtoomuchtodo #spooniewithtoomuchontheirplate #fatigue #healthstruggles


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I started my infusions for Fabry in 2007, since then my quality of life is improved. I’m really thankful for the people that helped me in all this. Unfortunately even doing my medication, I still living with a lot pain. However, I don’t know when, but I believe that I will have good days without pain.
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#fabrydisease #chronicpain #chronicpainwarrior #gastroparesis #chronicpainawarness #chronicillness #invisibleillness #chronicpainsurvivor #infusionday #fightlikeawarrior #invisibleillnessawarness #homeinfusion #disability #smilethroughthepain #spoonie #spoonielife #geneticdisorder #spoonieproblems #inpatient #pain #chroniclife #spooniewarrior #spooniestrong #painsucks #autoimmune #fibromyalgia #geneticdisorder #doençadefabry #painwarrior


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Hey everyone!! As you know June is #myastheniagravisawarenessmonth and fellow MGers @cmills4real and @seemenotmg are doing some challenges to help raise awareness about our rare autoimmune disorder! If you'd like to help us just follow the directions in the pictures. Tag us and use hashtags!! Feel free to share ❤️💪❄️


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Today's #ticktuesday is all about - Why is Lyme disease so commonly misdiagnosed?! A question so many of us lymies ask. •

I personally went about 3-5 years (maybe more there is no true way of knowing) with no answers, or better yet the wrong answers by doctors all over. •

The spirochete (lyme bacteria) has been titled “the great imitator” because of its amazing ability to mimic nearly any chronic condition ... but WHY?!


Spirochetes have the ability to alter their cell wall proteins, making them exceptionally good at tricking the body’s immune system into thinking they are something else.
In addition to their standard spiral shape, they can morph into four additional configurations: cystic, granular, L-form, and biofilm. Not only does this alteration of form perplex the body itself but it also challenges the Lyme literate doctors. •

Lyme bacteria is excellent at hiding under circumstances such as antibiotic usage, or remaining dormant for long periods. Both of these situations can lead to incorrect diagnoses. •

Overall, there are 5 subspecies of B. burgdorferi, with over 100 strains in the U.S. and 300 worldwide! This kind of diversity adds yet another layer of complexity to identification. •

With all of these factors it is no surprise that Lyme disease is one of the most difficult conditions to diagnose.


I encourage everyone who thinks they could be experiencing Lyme symptoms to get to specialists near you. Never settle without answers! Keep fighting!! •
#lymedisease #lymediseaseawareness #chroniclyme #chronicillness #spoonielife #beautyandbeyond


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Even afleiding zoeken met Saartje.... Het gaat lichamelijk niet zo goed. Ik heb waarschijnlijk weer een ontsteking bij de insteek van mijn peg-j te pakken en hierdoor heb ik heel veel pijn. Daarnaast hebben mijn benen een eigen willetje ontwikkeld en vinden ze het leuk om te pas en te onpas vervelend te gaan doen. Het lopen gaat eigenlijk niet meer omdat het te veel pijn opevert en er valgevaar is. Hier ba ik wel van omdat het mij nog meer beperkt en ik daar een weg mee moet vinden. Helaas kan ik ook niet meer zelfstandig naar buiten omdat de my skate (elektrisch stuurtje voor de rolstoel) te zwaar is geworden en dit zorgt voor veel problemen zoals schouders die luxeren. Vorige week heb ik een heel fijn stuurtje getest en toen ik daar mee reed , voelde ik me weer een beetje opbloeien en er ging een wereld voor mij open. Het stuurtje is ontzettend prijzig en voor dat geld kan je ook een mooie auto kopen. Gisteren hebben een ergo en ik alles op papier gezet om naar de gemeente te sturen in de hoop dat ze de aanvraag goedgekeuren zonder dat ik eerst nog van alles moet uitproberen en er onafhankelijke adviseurs voor je deur staan. Als de aanvraag goedgekeurd wordt kan ik over drie maanden weer zelfstandig naar buiten.
Naar buiten gaan is voor mij een uitlaatklep en geeft mij een gevoel van vrijheid. Vijf jaar geleden haalde ik mijn rijbewijs en had ik grote dromen, zo wilde ik bijvoorbeeld met een leuke VW T1 busje rond reizen met mijn fotografie spullen en genieten van mijn hobby en de vrijheid. Toen wist ik nog niet wat ik had en dat ik nu de dagen moet doorbrengen met keuzes maken. Als ik het ene wil doen, kan het andere niet en als je eigenwijs toch dingen wil doen moet je de hoofdprijs betalen, die bestaat uit extreme vermoeidheid en heel veel pijn. Soms heb ik het ervoor over omdat ik ook wil leven en mens wil zijn. De uitjes en het buiten zijn zorgen er namelijk ook voor dat ik even vergeet dat ik 'ziek' ben.

#taboedoorbreken #eds #ehlersdanlossyndrome #heds #edsfighter #edswarrior #gastroparesis #feedingtube #pegj #pegjtube #dystonie #dystonia #dystrofie #dystrophy #ptss #spoonie #spooniewarrior #spoonielife #spoonieproblems #cronicalill #chronischziek


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Day 19 - what is something migraine has taken from me? It’s difficult to chose one thing. My first thoughts were of things I feel that I have almost materially lost, i.e my career? my time? But the biggest thing for me has been, without doubt, confidence.

I feel that I have become less reliable and others have lost confidence in me, but most importantly, I have lost confidence in myself. I don’t know how to trust myself anymore, because I can’t guarantee that I won’t ruin plans, be independent or perform at the level I need to. I worry that a migraine with hit me at any point and have as a result withdrawn in to myself. It’s a really horrible feeling to not trust your own body and I think I have been carrying some anger, hurt and guilt about that for quite a while.

Recently I was introduced to the idea of self compassion and have been listening to Kristen Neff talking about this idea on TEDx and YouTube (really, check her out!) Learning to be kinder to myself has to become my number one priority, because I feel so many emotions over developing chronic migraine, and I need to work on letting go of that, rebuilding my confidence and moving forwards with my life with this disease.

#mham30daychallenge #mham #migraine #chronicillness #chronicmigraine #spoonie #spoonielife #makeitvisible #1in7 #talkmigrainewithme #migraineawareness #chronicmigraines #selfcompassion #confidence #kristenneff


0

Sorry I am unable to get to everyone’s messages, My body has been kicking my ass for over a week now. Over the weekend I was in the hospital and we seem to be getting nowhere 🤷🏻‍♀️ I see one of my specialists tomorrow..I am praying we switch up the meds...As I do not know how much more I can take of this crap😢 Wish me luck and keep me in your prayers🙏 Thank you #spoonielife #autoimmunedisease #chemo #biologics #health #frustrated #sick #prayers #godhasaplan #nevergiveup #shieldmaiden #chronicpain #chronicillness #painpump #rheumatoidarthritis #ehlersdanlossyndrome #gastroparesis #ulcerativecolitis #outsick #spoonie


6

Yesterday's morning pages. How many of you do this? Every morning you get out your concerns on paper. Put it down in your Journal, think about it for a while. Maybe even cry about it. Then close that book for the day to get on with what you've got to get on with, hopefully lighter and with gratitude. Within those journal pages you can keep your deepest thoughts, your deepest feelings. Even the ones that feel terrifically uncomfortable. A journal can serve as a very close friend. The closest friend you have. Maybe your Journal is filled with letters to a higher power. Maybe it's addressed to the journal itself. It doesn't really matter how you do it as long as you do it. If you're a Journaler, you know what I mean. Sometimes I just have to get some things out about people I love and I'm concerned about, and I myself struggle with depression at times when I am not doing well due to physical symptoms of The Chronic conditions I have. I think that's just part of it when you have to deal with something like that. I don't share most of my journal pages. But I'll share these this time, even though it unnerves me to. And then it's on to happier lighter things in life, because at this stage in my life, I like the happier things in life as much as I can get them because there's a lot that can be on the heavier side of things. I hope peace, love, and happy moments will fill your day today. 💜💜💜 #journal #journalmoments
#journals #journalling #writing #write #writeyourheartout #keepajournal #journalwriting #journallove #chicsparrow #creme #a5 #tomoeriverpaper #morningpages #morningwriting #peace #love #gratitude #writingdownyourconcerns #pentopaper #spoonie #spooniegirl #spoonielife


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