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#spooniestrong

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• Kenze’s Story •
“I was diagnosed with POTS 3 years ago, it started out very minor, just blood pooling in my feet when I was standing to long. Then I started fainting and collapsing multiple times a day. I’m now taking florenef 2 times a day along with 2 liters of saline that I get infused through my port twice a week. I’m doing a little better now, fainting now only 2 times a week, but I use a walker or a wheelchair most days bc along with my EDS and MCAD it has been disabling.”
Follow Kenze at @chronically_kenze
If you would like to share your child’s (or your own) chronic illness story on our page, message us!

"Must lick air..to taste dis fries..." 🍟 🍟 PP's grand-pawrents got us matching costumes (this isn't it) but this was one of the contenders! We were all thrilled to see each other again, and Percie decided to express her happiness this morning by peeing herself (we were outside and she had not gone potty yet) whoops!! 😂😬👍 Now off to a yummy dinner that I will not have to "swipe" into, imagine that!! 😍🧀🍷🍽 [PP wears a french fry bucket hat, a costume specifically for dogs, in Target. She is licking her nose and looks silly but adorable as her head is overtaken by the orange and yellow headpiece.]

Having a chronic illness can often be a daily battle. But we love these words from @freyliving, remembering why she's thankful today: "It’s go time. This is 4 days worth of my IV antibiotics. I’m thankful for an awesome CF team, access to the supplies and medications I need and my amazing husband who walks with me and cares for me along this whole journey!"
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What are you thankful for today?
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#chronicillness #spoonie #chronicillnesswarrior #chronicillnesslife #spoonielife #spooniesupport #spooniestrong #spooniesunite #cysticfibrosis #fibromyalgia #cflife #ivantibiotics #chronicfatigue #lupus #autoimmunedisease #chronsdisease #autoimmunewarrior #themighty #themightysite

It's #invisibledisabilityweek - a week for raising awareness about invisible disabilities - and I've got a few of them! 🌈
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While I look "normal" on the outside, I am fighting a battle against a chronic autoimmune vasculitis called takayasu's arteritis, fibromyalgia (chronic pain), anxiety, depression, weak bones, chronic fatigue, adrenal fatigue, GERD, IBS... I often use mobility aids like my wheelchair to get around, I take 15+ pills a day and I get infusions/have injections of a life-saving antibody called toculizamab. I have doctors and hospital appointments weekly, sometimes more. I am limited in how much energy I have, and I do things at a fairly slow pace (compared to what's expected from "normal" people). Because so much of my health is out of my control, I've become pretty accepting of my limitations & I have started to really enjoy living my life in the ways that I can, while I'm here! That doesn't mean I don't get absolutely FRUSTRATED and feel like shit a lot of the time - but I have been learning more and more to live in the moment and enjoy my precious time on this earth 🌏 ✨ .
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But one of the most frustrating things about living with #invisibledisability is the friends who became too awkward to talk to me about it, and became distant; how I'm treated like either an alien, child or a fetish by total strangers; and how accessibility isn't a given wherever I go. .
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Here's some PSA's if you don't live with a disability, but want to help people who do.
If you have a friend with a chronic illness - listen to them, be there for them, don't doubt their symptoms just because you can't see them, and help them out (& if you offer help, actually make yourself useful!) - or stop wasting their limited time and energy. If you see a stranger using a mobility aid, don't question them. They're using it because *gasp* they need it - and it shouldn't be expected that they explain themselves everywhere they go. If you are planning an event, make sure it's accessible!
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My illnesses are invisible, but I'm going to be LOUD about their existence, for as long as I live, so that others going through something similar will know that they are not alone ❤

Let your smile change the world, but don’t let the world 🌎 change your smile.
It is difficult that I cannot explain to people how it feels. Every meal is hard, every bite is hard, just anything that had to do with eating is hard. I still struggle with no appetite and pain with every swallow and pain and nausea after eating.

I have been home for 2 weeks now (Pic from during the hospitalization) and things are not getting any easier. I am starting to get used to the pain so I don’t cry all the time anymore. But I do anticipate the on coming pain and therefore dread mealtimes coming up.
I am doing the best I can to eat more food and make improvements to be able to fully transition from Neocate to regular food. But this is not happening fast as I can hardly get in enough calories with drinking the Neocate and I am starting to feel pressure to make this transition faster so I am kind of stressing.

do i look sick now? 🙃
i got a picc line placed today. this little tube runs from that white plastic bit, into my vein, all the way through to my heart. this enables me to give myself iv antibiotics and hydration at home - no hospital or needles required! 🙌🏻

i'm getting sinus surgery in the beginning of november, so this is to prepare for that. i'll also stay on the drugs for a few weeks after surgery too.

it's difficult for people with cystic fibrosis to keep the airways in our sinuses clear because our thicker stickier mucus gets infected frequently and can cause polyps and scarring. 🤧 but it's super important because infections in our sinuses can literally drip down into our lungs and cause bigger problems. 😷 having this surgery will help me prevent infections, which will help me keep my lungs for as long as i possibly can!

ps: hello everybody who found my account today because of the @cf_foundation's repost! i don't have a whole lot of energy left after my day in the hospital, but i see you and i love you!! 💜💜💜

Good morning warriors! Welcome to Day 5️⃣ of #SpoonieYogaTribe! 💖🥄 Can you believe we are already halfway done?! 😬
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Today's pose is Ananda Balasana, Happy Baby Pose 👶🏼 I am showing a modification with the knees hugged up toward the armpits. This version will still give you a good inner thigh stretch but it's a bit less intense. Be sure to listen to your body and check in with my cohosts for their variations!
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🔸 QOTD: WHO HAS BEEN YOUR BIGGEST SUPPORTER THROUGHOUT YOUR PAIN/ILLNESS? 🔸 My husband has been a huge supporter, and all of you give me support and love every day. BUT I'd like to take this opportunity to pat my own self on the back! 😁 I have tirelessly researched my condition, been willing to try new treatments, seen a dozen different doctors. I take care of myself mentally, emotionally and physically every moment of every day. I've learned to give myself unconditional presence as I grieve the loss of my health. I've become my greatest ally, and I am so grateful for that. 🔸
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It’s not too late to join us! Here's how to participate:

1️⃣ Repost our flyer and tag some friends to join you.
2️⃣ Follow all hosts and sponsors.
3️⃣ Post your version of the pose each day with our hashtag #SpoonieYogaTribe.
4️⃣ Tag all hosts and sponsors in each of your posts.
5️⃣ Make sure your profile is set to public so we can see your posts.

Our Spoonie Hosts: 🥄 @sleepysantosha
🥄 @theycallmegumby
🥄 @life.with.kimberli
🥄 @weall_floaton

Our Generous Sponsors: 🎁 @matcha.now
🎁 @shideawords
🎁 @positivecreationss
🎁 @baekiiara 🎁 @sleepysantosha

Cute medical mask snapchat filter! Spending today resting - hope you all have a quiet, low-pain, high-spoon weekend. ❤

#spoonie #spooniestrong #spoonielife

Weer een gezellig dagje met vriendinnetjes en een zeer late lunchen in Breda 🍣

MOST RECENT

💟 We had a great time walking yesterday to raise money and awareness for Crohn’s disease. It was great to meet people who also have the disease and hear their story! All in all it was a great walk! Thank you all who donated to the cause. The walk in Tampa has raised over $64,000!!! 💟 #takesteps #ccfa #courtneyscrohns #crohns #crohnsdisease #spoonie #biologics #ibd #ibdawareness #chronicpain #chronicillness #invisibledisease #spoonie #spoonielife #crohnslife #crohnsawareness #crohnswarrior #crohns #remicade #autoimmunedisease #autoimmunestrong #invisibleillness #ibdvisible #girlswithguts #ileostomyreversal #ileostomy #stoma #ostomy #ostomate #spooniestrong #ostomyawareness #lifetakesguts

💟 We had a great time walking yesterday to raise money and awareness for Crohn’s disease. It was great to meet people who also have the disease and hear their story! All in all it was a great walk! Thank you all who donated to the cause. The walk in Tampa has raised over $64,000!!! 💟 #takesteps #ccfa #courtneyscrohns #crohns #crohnsdisease #spoonie #biologics #ibd #ibdawareness #chronicpain #chronicillness #invisibledisease #spoonie #spoonielife #crohnslife #crohnsawareness #crohnswarrior #crohns #remicade #autoimmunedisease #autoimmunestrong #invisibleillness #ibdvisible #girlswithguts #ileostomyreversal #ileostomy #stoma #ostomy #ostomate #spooniestrong #ostomyawareness #lifetakesguts

💟 We had a great time walking yesterday to raise money and awareness for Crohn’s disease. It was great to meet people who also have the disease and hear their story! All in all it was a great walk! Thank you all who donated to the cause. The walk in Tampa has raised over $64,000!!! 💟 #takesteps #ccfa #courtneyscrohns #crohns #crohnsdisease #spoonie #biologics #ibd #ibdawareness #chronicpain #chronicillness #invisibledisease #spoonie #spoonielife #crohnslife #crohnsawareness #crohnswarrior #crohns #remicade #autoimmunedisease #autoimmunestrong #invisibleillness #ibdvisible #girlswithguts #ileostomyreversal #ileostomy #stoma #ostomy #ostomate #spooniestrong #ostomyawareness #lifetakesguts

“I’m walking for my mommy” 💙💙 💟 We had a great time walking yesterday to raise money and awareness for Crohn’s disease. It was great to meet people who also have the disease and hear their story! All in all it was a great walk! Thank you all who donated to the cause. The walk in Tampa has raised over $64,000!!! 💟 #takesteps #ccfa #courtneyscrohns #crohns #crohnsdisease #spoonie #biologics #ibd #ibdawareness #chronicpain #chronicillness #invisibledisease #spoonie #spoonielife #crohnslife #crohnsawareness #crohnswarrior #crohns #remicade #autoimmunedisease #autoimmunestrong #invisibleillness #ibdvisible #girlswithguts #ileostomyreversal #ileostomy #stoma #ostomy #ostomate #spooniestrong #ostomyawareness #lifetakesguts

I have been reunited with my camera! 📸 Photography has always been a passion of mine and now that I have my camera here at college I can spend some time de-stressing by taking photos (of P, naturally) ☀️ Slowly but surely I have to regain my photoshop skills, so sorry about the concrete/fire hydrant background 😂 What kind of hobbies do you do to unwind?

I don't know why, but today I seem to be even more frustrated about the lack of awareness than usual. There is such a minimal amount of awareness and research being done about endometriosis. There's even less about Interstitial Cystitis. and even though people know about Fibromyalgia, they don't care to research into that either. All these diseases with no cures and no effective treatments and yet people expect em to be happy because "it could be worse"? No. I'm pissed. I'm pissed that i have no control over the majority of my body. I'm pissed because my doctors don't care about my day to day life. and I'm pissed that more people don't care to understand what we all go through daily. and don't even get me started on the lack of affection towards mental health!! ugh i'm just so pissed and hopeless toward the way we are treated.
#endometriosis #endostrong #endosisters #endosister #endoawareness #endometriosisawareness #endowarrior #endometriosiswarrior #endopain #endometriosispain #infertility #chronicillness #chronicpain #chronicallyill #spoonie #spooniestrong #spooniewarrior #invisibleillnessawareness #invisibleillness #invisibleillnesswarrior #fibromyalgia #fibrowarrior #ibs #interstitalcystitis #mentalhealth #depression #anxiety #ptsd #panicattack #butyoudontlooksick

It can be difficult at times to say no or cancel plans. The people around us might not always be understanding but that’s not your fault. It can be hard for anyone to understand what we go through unless they go through it themselves! Sometimes we just have to say no because our body needs the rest. It’s okay to take some time for yourself and do what’s best for you! 💛✨
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#endosister #endostrong #endowarrior #endometriosis #endometriosiswarrior #endometriosisawareness #endopain #chronicillness #chronicpain #chronicpainwarrior #chronicallyill #spoonie #spooniesister #spooniestrong #spooniewarrior #invisibleillness #butyoudontlooksick
#mentalillness #mentallyill #mentalhealth #anxiety #depression #ptsd #fightlikeagirl #posttraumaticstressdisorder #oneinten #mentalhealthawareness #mentalhealthsupport

When I first got set up with a primary doctor ( just for regular things like a cold,) I ended up having to teach her about my syndromes,which I was happy to do. Dysautonomia isn't taught in medical school today. There is no cure, and there is no protocol for how to approach it when someone is diagnosed. In fact, diagnosed patients go through a series of trial and error with many different medications and dosages until they hit a combination that seems to help the most. Even then, they are left dealing with the side effects of those medications. I am extremely thankful for the progress and work the medical field has made towards Dysautonomia. Without them, my life would be very different. My dream is to raise awareness about Dysautonomia so that there is a common understanding of what it is among doctors and community and that this will get us closer to finding a cure.
#dysautonomiaawarenessmonth #octoberdysautonomiaawarenessmonth #dysautonomiaawareness #pots #potssymptoms #eds #mcas #potsie #SpoonieStrong #raiseawareness #wearturquoise #askme #health #Godisgood #turquoise #findacure #disability

Het moment dat heel je lichaam nee zegt en je alleen nog maar in je bed kunt liggen en slapen. Mijn dag, maar wel met leuke sokken... 🌸 #newpostonline

Bbbllleeurghhh. I am fused with the duvet and am unable to move. Bloody germs!! A spoonie shouldn't have to deal with colds on top of a list of diseases, breathing through my nostrils was all I had left!! 🤧 #cold #sick #duvetday #badday #girlswithpiercings #girlswithtattoos #spoonie #spoonielife #spoonieproblems #spooniestrong #teamspoonie #spooniesunite #chronicillness #chronicpain #invisibleillness #butyoudontlooksick #autoimmune #crohns #arthritis #fibromyalgia #mastcell #mcad #tubie #ostomy #awareness #nevergiveup #believeinyourself #perfectlyimperfect #keepfighting #onedayatatime

Starting my Sunday morning. Still in a lupus flare. Have to catch a ride for the pharmacy since I missed my medication and forgot it ran out. Anything causes flares I swear ! Crocheting today and maybe do a Live on YouTube today!!! 😜 #YouTube #crocheting #mylife #lupus #lupusflare #spoonie #spooniesupport #spoonies #spooniestrong #chronicillness #chronicallyill #mentalhealth #depression

Having a cold when you're a spoonie and have zero immunity is crap. I woke up thinking I had Ebola 🤢🤧🤒😷 staying in bed and reading/watching funnies for me. Lemsip please, shaken not stired. 🥃 #cold #sick #duvetday #germsbegone #Spoonie #spoonielife #spoonieproblems #spooniestrong #teamspoonie #spooniesunite #spooniefamily #immunosuppressed #chronicillness
#chronicpain #invisibleillness #butyoudontlooksick #sickchick #autoimmune #crohns #arthritis #fibromyalgia #mastcell #mcad #tubie #ostomy #awareness #nevergiveup #believeinyourself #perfectlyimperfect #keepfighting

Cold but beautiful ❤️

I'm exhausted, I started heavily bleeding Friday and have horrible referred shoulder pain along with it. I couldn't get any sleep last night, I was wide awake at 5 when my boyfriend woke up for fishing, so I went too (aka sat in the warm car playing a game and taking photos when he caught a fish😂) My mood is terrible, I want to cry, I want to kill my boyfriend, I want to sleep, I want to eat the whole kitchen, I also don't actually know what I want...😡
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 #endostrong #endometriosis #endometriosisawareness #chronicillness #chronicpain #chronicallyill #endowarrior #endopain #spooniesister #spooniestrong #spoonie  #chronicpainwarrior #invisibleillness #butyoudontlooksick #mentalhealth #anxiety #love #hamstergram #picoftheday #mentalhealthsupport #syrianhamster #mentalhealthawareness #quote #depression #endowarrior #follow #endosisters #adenomyosisawareness #adenomyosis #invisibleillawareness

I got a squatty potty! 😂 I've wanted one for ages! Hitting my gut issues from multiple angles! 🎉

Got home yesterday after 6 weeks away and the sofa had mildew on it. Got up this morning and begin dealing with it only to find SPORES in the A/C! 😫 OMG! They blew out when I wiped it down... all over me! Then I realise it's everywhere! All the furniture, skirting boards, cushions... I wash and clean all day. (All I need is a fungal overgrowth, eh!!! Or maybe I HAVE ONE!? COULD THIS BE THE REASON FOR MY GUT PROBLEMS?) 😮 I'm not sure, but I've never seen any before and it has been really wet here, and the house closed up with not aircon. So I bring out the vinegar and neem oil, wear a mask, and hope I get it all cleaned up. Didn't eat much as I was so busy, when I did had my supps. Not outwardly suffering my usual symptoms. My face and chest is red, and I have a bit extra mucus but its thin and not causing a problem... I am constipated though. Is it working? I've no idea! All I can do is keep taking the tablets! 😂

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