#chronicallyill

252,899 posts

The @momos_sportsbar t-shirts by @islandlife.liny 👚👕 are now available for purchase at the @angelashousehomestore !👏😍
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Be sure to get your own shirt today as the proceeds go to support our kids!💙
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#MoMos #islandlifeliny #ahhs #medford #ahli #angelashouseli #medicallyfragile #chronicallyill #littleheros #charity #longisland #newyork #littlemiracles #breakingstereotypes #beatingtheodds #goingagainstthegrain #donate #support #longislandershelpinglongislanders #disability #differentabilies #themighty #sufferingthesilence #notalldisabilitiesarevisible #nonprofits #dontsufferalone

The @momos_sportsbar t-shirts by @islandlife.liny 👚👕 are now available for purchase at the @angelashousehomestore !👏😍 . . Be sure to get your own shirt today as the proceeds go to support our kids!💙 . . . #MoMos #islandlifeliny #ahhs #medford #ahli #angelashouseli #medicallyfragile #chronicallyill #littleheros #charity #longisland #newyork #littlemiracles #breakingstereotypes #beatingtheodds #goingagainstthegrain #donate #support #longislandershelpinglongislanders #disability #differentabilies #themighty #sufferingthesilence #notalldisabilitiesarevisible #nonprofits #dontsufferalone - 7 minutes ago

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This made me laugh 😂 
Credit: Unknown

Follow us @how.u.feeling. Our DMs are always open. Come introduce yourself to us and if you ever need to chat or vent we are always avail. You are not alone in your fight ❤️

This made me laugh 😂 Credit: Unknown Follow us @how.u.feeling. Our DMs are always open. Come introduce yourself to us and if you ever need to chat or vent we are always avail. You are not alone in your fight ❤️ - 8 minutes ago

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Happy Wednesday 🤗 life has been so crazy busy lately. I’ve been writing so many essays and tests + hanging out with my fam & my baby puppy. Also trying to balance school and my health 😴. Haven’t had much time to post here but hoping to get back into it soon!

Happy Wednesday 🤗 life has been so crazy busy lately. I’ve been writing so many essays and tests + hanging out with my fam & my baby puppy. Also trying to balance school and my health 😴. Haven’t had much time to post here but hoping to get back into it soon! - 10 minutes ago

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At the digestive clinic today for SIBO test number one. 🦠
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(I’ve always wanted to use that emoji, but have never had a reason. Making today that reason, even if it doesn’t make the most sense. 😂)
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As much as my brain really wanted to be grumpy and extremely annoyed today, my heart feels happy. So, here I am - enjoying this huge recliner, heated blankets, the sugar water I got to drink, and daydreaming about what I’m going to eat when I get out of here. 😄
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Also, in other good news, the staff is amazingly friendly and welcoming here, and they started my test 30 minutes early! 🎉 That means we’ll hopefully be out of here in just 2.5 hours! 👏🏼🤞🏼
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I hope that even if you’re having a crappy day, you’re able to find one small thing that makes your heart happy. 💕

At the digestive clinic today for SIBO test number one. 🦠 - (I’ve always wanted to use that emoji, but have never had a reason. Making today that reason, even if it doesn’t make the most sense. 😂) - As much as my brain really wanted to be grumpy and extremely annoyed today, my heart feels happy. So, here I am - enjoying this huge recliner, heated blankets, the sugar water I got to drink, and daydreaming about what I’m going to eat when I get out of here. 😄 - Also, in other good news, the staff is amazingly friendly and welcoming here, and they started my test 30 minutes early! 🎉 That means we’ll hopefully be out of here in just 2.5 hours! 👏🏼🤞🏼 - I hope that even if you’re having a crappy day, you’re able to find one small thing that makes your heart happy. 💕 - 19 minutes ago

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AHAHAHAHAHHAHAHAHA
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.  #hidradenitissuppurativa #hidradenitis #hidradenitissuppurativawarrior #hidradenitissuppurativaawareness #hidradenitissuppurativasupport #hswarrior #hswarriors #hswarriorsunite #hsawareness #likeforlikes #like4likes #autoimmunedisease #autoimmunewarrior #chronicallyill #spoonie #spoonielife #spoonieproblems #spooniestrong #chronicpain #chronicpainwarrior #chronicpainawareness #chronicillness #chronicillnesswarrior #chronicillnessawareness #pcos #pcosawareness #pcosfighter #pcoscysters #invisibleillness #invisibleillnessawareness

AHAHAHAHAHHAHAHAHA . . . . . . . . . . . . . . . . #hidradenitissuppurativa #hidradenitis #hidradenitissuppurativawarrior #hidradenitissuppurativaawareness #hidradenitissuppurativasupport #hswarrior #hswarriors #hswarriorsunite #hsawareness #likeforlikes #like4likes #autoimmunedisease #autoimmunewarrior #chronicallyill #spoonie #spoonielife #spoonieproblems #spooniestrong #chronicpain #chronicpainwarrior #chronicpainawareness #chronicillness #chronicillnesswarrior #chronicillnessawareness #pcos #pcosawareness #pcosfighter #pcoscysters #invisibleillness #invisibleillnessawareness - 22 minutes ago

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Use it baby! Get messy with it!!! Color outside the lines. 🎨Say the thing you’re afraid to say. 🗣 DO the thing you’re afraid to do. 😆 Go to the place you’ve dreamed of going to!✈️ Help people. Be kind to strangers. 🙏☺️
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When that lady fell on top of my head last June & caused the series of events that has followed me since to happen, it caused something to shift inside me. I knew my body changed. I sustained a serious injury. However my MIND changed too. I began meditating 🧘‍♀️much more than I ever did in my life. My thoughts began to change. My wants & needs began to shift. It has given me a deeper understanding of myself, my purpose here on earth, my surroundings, and my relationship to you! 🌺 Yes, you. 🥰 
So for the last year & some months now I do my best every day to not just live my life, but to USE it somehow in some way to leave this world a better place then it was last year. 
After all I only have this life. 
I don’t want to waste not using it. Ya know what I mean? 😌 .
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#wereallinthistogether
#chronicpain #chronicpainwarrior #chronicillness #chronicallyill #invisibleillness 
#invisibleillnessawareness 
#spoonie #spoonies #spoonielife 
#spooniewarrior 
#spooniesisters 
#spooniecommunity 
#spooniefamily 
#spoonieproblems #spooniemom 
#pelvicfloordysfunction
#pelvicpain #pelvicfloor 
#rootcause 
#icwarrior #icsisters 
#nervepain 
#womenshealth #menshealth 
#youdontlooksick #vlogger 
#momsofinstagram #momblogger 
#bloggermom

Use it baby! Get messy with it!!! Color outside the lines. 🎨Say the thing you’re afraid to say. 🗣 DO the thing you’re afraid to do. 😆 Go to the place you’ve dreamed of going to!✈️ Help people. Be kind to strangers. 🙏☺️ . . When that lady fell on top of my head last June & caused the series of events that has followed me since to happen, it caused something to shift inside me. I knew my body changed. I sustained a serious injury. However my MIND changed too. I began meditating 🧘‍♀️much more than I ever did in my life. My thoughts began to change. My wants & needs began to shift. It has given me a deeper understanding of myself, my purpose here on earth, my surroundings, and my relationship to you! 🌺 Yes, you. 🥰 So for the last year & some months now I do my best every day to not just live my life, but to USE it somehow in some way to leave this world a better place then it was last year. After all I only have this life. I don’t want to waste not using it. Ya know what I mean? 😌 . . . #wereallinthistogether #chronicpain #chronicpainwarrior #chronicillness #chronicallyill #invisibleillness #invisibleillnessawareness #spoonie #spoonies #spoonielife #spooniewarrior #spooniesisters #spooniecommunity #spooniefamily #spoonieproblems #spooniemom #pelvicfloordysfunction #pelvicpain #pelvicfloor #rootcause #icwarrior #icsisters #nervepain #womenshealth #menshealth #youdontlooksick #vlogger #momsofinstagram #momblogger #bloggermom - 23 minutes ago

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# #FibroWarriorQuestion ⠀
I was diagnosed with Fibromyalgia 10 years ago when I was 14. I've had many different symptoms of fibro come and go and even stay. I'm now working a full time job on my feet everyday, and after I eat, I crashed, HARD! Is there any way I can avoid this? Or help myself stay awake? Do you have any advice?

# #FibroWarriorQuestion ⠀ I was diagnosed with Fibromyalgia 10 years ago when I was 14. I've had many different symptoms of fibro come and go and even stay. I'm now working a full time job on my feet everyday, and after I eat, I crashed, HARD! Is there any way I can avoid this? Or help myself stay awake? Do you have any advice? - 23 minutes ago

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Today is a doctor's appointments day with several errands to run in between. I know I'll be exhausted by the end of the day, but I'm glad that the weather is nice and I get to look at these beautiful colors while I go 🍁🍂 #crohns #crohnsdisease #ibd #ibdwarrior #inflammatoryboweldisease #doctorsappointment #doctorday #labs #hematologist #chronicillness #chronicallyill #spoonie #immunosuppressed #fall #autumn #nofilter #nature #beautifulday #fallcolors #redleaves🍁

Today is a doctor's appointments day with several errands to run in between. I know I'll be exhausted by the end of the day, but I'm glad that the weather is nice and I get to look at these beautiful colors while I go 🍁🍂 #crohns #crohnsdisease #ibd #ibdwarrior #inflammatoryboweldisease #doctorsappointment #doctorday #labs #hematologist #chronicillness #chronicallyill #spoonie #immunosuppressed #fall #autumn #nofilter #nature #beautifulday #fallcolors #redleaves 🍁 - 25 minutes ago

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Still struggling today. Very very sleepy, drained, tired, fatigued... just not having it at all... getting ready to go to the hospital for my weekly infusions. Really don't feel like leaving the house nor do I have the energy.  #chronicillnesswarrior #chronicinvisibleillnesswarrior #chronicillnesslife #chronicallyill #chronicinvisibleillness #chronicillness #chronicillnessawareness #crohns #crohnsdisease #crohnscolitis #colitis #crohnsawareness #colitisawareness #ibd #inflammatoryboweldisease #ibdawareness #autoimmunedisease #interstitialcystitisawareness #interstitialcystitis #inflammedanduntamed #spoonie #spoonielife #spoonieproblems #spooniestrong #fighter #warrior #keepfighting #stayingstrong #selfadvocate #theunchargeables

Still struggling today. Very very sleepy, drained, tired, fatigued... just not having it at all... getting ready to go to the hospital for my weekly infusions. Really don't feel like leaving the house nor do I have the energy. #chronicillnesswarrior #chronicinvisibleillnesswarrior #chronicillnesslife #chronicallyill #chronicinvisibleillness #chronicillness #chronicillnessawareness #crohns #crohnsdisease #crohnscolitis #colitis #crohnsawareness #colitisawareness #ibd #inflammatoryboweldisease #ibdawareness #autoimmunedisease #interstitialcystitisawareness #interstitialcystitis #inflammedanduntamed #spoonie #spoonielife #spoonieproblems #spooniestrong #fighter #warrior #keepfighting #stayingstrong #selfadvocate #theunchargeables - 26 minutes ago

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Some resources I like to look back on when someone asks what it’s like to have fibro. #fibromyalgia #fibro #fibromama #fibrosucks #introvertartist #chronicpain #chronicallyill #artistherapy #tryingtostaypositive #spoonie #invisibleillness #fibrostrong #fibrowarrior  #butyoudontlooksick #livingwithlimits #countingspoons

Some resources I like to look back on when someone asks what it’s like to have fibro. #fibromyalgia #fibro #fibromama #fibrosucks #introvertartist #chronicpain #chronicallyill #artistherapy #tryingtostaypositive #spoonie #invisibleillness #fibrostrong #fibrowarrior #butyoudontlooksick #livingwithlimits #countingspoons - 30 minutes ago

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We are extremely excited to be doing a giveaway for our caretakers this Thanksgiving. What better way to show your favorite caretaker just how much you love and appreciate them.
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We want to know why you love your favorite caretaker and how they have gone above and beyond for you. Send us a message and tell us why we should choose them! We are accepting nominations from now until the 27th. You can send us a dm or email us at sending-spoons@outlook.com
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Cant wait to read your submissions!  #sendingspoons #sendingspoonssubscription #chronicillness #chronicillnesssubscription #subscriptionbox #spoonie #spoontheory #chronicpain #ms #chrons #cysticfibrosis #nmo #pediatriccancer #gastroparesis #lyme #zebrastripes #spoonielife #chronicillnesswarrior #chronicallyill #eds #pots #sma #chronicillnesscommunity #chronicwarrior #invisibleillness #youdontlooksick #disability

We are extremely excited to be doing a giveaway for our caretakers this Thanksgiving. What better way to show your favorite caretaker just how much you love and appreciate them. ° We want to know why you love your favorite caretaker and how they have gone above and beyond for you. Send us a message and tell us why we should choose them! We are accepting nominations from now until the 27th. You can send us a dm or email us at sending-spoons@outlook.com ° Cant wait to read your submissions! #sendingspoons #sendingspoonssubscription #chronicillness #chronicillnesssubscription #subscriptionbox #spoonie #spoontheory #chronicpain #ms #chrons #cysticfibrosis #nmo #pediatriccancer #gastroparesis #lyme #zebrastripes #spoonielife #chronicillnesswarrior #chronicallyill #eds #pots #sma #chronicillnesscommunity #chronicwarrior #invisibleillness #youdontlooksick #disability - 32 minutes ago

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Being mischievous and not worried about it 🤷🏻‍♀️
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Got in trouble, found a new spot, then started a trend 🙃

Being mischievous and not worried about it 🤷🏻‍♀️ . Got in trouble, found a new spot, then started a trend 🙃 - 33 minutes ago

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I’m still rocking a swollen face 🤷‍♀️
I don’t know why it’s happening or when it’s planning on leaving but it is less swollen than yesterday.

Today I got my nails done since I have all my tests Friday when I would normally go.

I’m just sick and tired of being sick and tired...
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#selfie #colorfulhair #pinkhair #unicorn #hoodie #unicornsweater #chronicillness #chronicpain #chronicfatiguesyndrome #mecfs #chronicfatigue #fibromyalgia #fibro #bodyaches #swelling #faceswelling #pain #painmanagement #myofascialrelease #gout #arthritis #chronicallyill #onedayatatime

I’m still rocking a swollen face 🤷‍♀️ I don’t know why it’s happening or when it’s planning on leaving but it is less swollen than yesterday. Today I got my nails done since I have all my tests Friday when I would normally go. I’m just sick and tired of being sick and tired... * * * #selfie #colorfulhair #pinkhair #unicorn #hoodie #unicornsweater #chronicillness #chronicpain #chronicfatiguesyndrome #mecfs #chronicfatigue #fibromyalgia #fibro #bodyaches #swelling #faceswelling #pain #painmanagement #myofascialrelease #gout #arthritis #chronicallyill #onedayatatime - 36 minutes ago

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It always warms my heart to know that I am helping out fellow female entrepreneurs be confident in their bookkeeping or confident in the services I am providing them.
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I like to call them Tea Time Moments. Is there something you call love notes from your clients?
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#Testimonial #Bookkeeping #WorkLifeBalance #TravelAddicts #BusinessConsultant #FlexibleWorking #MarriedToMyBestFriend #SmallBusinessTIps #FemaleBusinessOwner #VirtualAssistantLife #HerSuccess #BlkCreatives #LocationIndependent #BestHusband #ChronicallyIll #WifeLife #MyHometown #PeachTeaCalculations

It always warms my heart to know that I am helping out fellow female entrepreneurs be confident in their bookkeeping or confident in the services I am providing them. 🥰 I like to call them Tea Time Moments. Is there something you call love notes from your clients? . . . . #Testimonial #Bookkeeping #WorkLifeBalance #TravelAddicts #BusinessConsultant #FlexibleWorking #MarriedToMyBestFriend #SmallBusinessTIps #FemaleBusinessOwner #VirtualAssistantLife #HerSuccess #BlkCreatives #LocationIndependent #BestHusband #ChronicallyIll #WifeLife #MyHometown #PeachTeaCalculations - 36 minutes ago

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ɪ ʙʀᴇᴀᴋ ᴅᴏᴡɴ ᴀɴᴅ ᴄᴀʀʀʏ ᴏɴ...⁣
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Every day I say I can’t do this.⁣
Every day I continue on.⁣
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Every night I cry into my pillow. ⁣
Every morning I rise again.⁣
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I live for you my beautiful baby.⁣
I pray you never understand these cries.⁣
One day I will have to explain but for now I will just hold on tight.⁣
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The pains scream louder and fears are knocking at the door.⁣
I try to shut them out but I don’t know how long this door will hold. ⁣
Apparently the wood is rotten but it’s only 21 years old.⁣
Been patching the cracks for years but it’s time to tear it down and build again.⁣
Out of commission for a few months but in theory, ⁣
better in the end.⁣
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#slippeddisc #spinalsurgery #heds #chronicallyill #chronicallyillmom #chronicpain #chronicpainwarrior #endosufferer

ɪ ʙʀᴇᴀᴋ ᴅᴏᴡɴ ᴀɴᴅ ᴄᴀʀʀʏ ᴏɴ...⁣ ⁣ Every day I say I can’t do this.⁣ Every day I continue on.⁣ ⁣ Every night I cry into my pillow. ⁣ Every morning I rise again.⁣ ⁣ I live for you my beautiful baby.⁣ I pray you never understand these cries.⁣ One day I will have to explain but for now I will just hold on tight.⁣ ⁣ The pains scream louder and fears are knocking at the door.⁣ I try to shut them out but I don’t know how long this door will hold. ⁣ Apparently the wood is rotten but it’s only 21 years old.⁣ Been patching the cracks for years but it’s time to tear it down and build again.⁣ Out of commission for a few months but in theory, ⁣ better in the end.⁣ ⁣ #slippeddisc #spinalsurgery #heds #chronicallyill #chronicallyillmom #chronicpain #chronicpainwarrior #endosufferer - 38 minutes ago

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If you're suffering from chronic digestive issues like diarrhea, nausea, stomach pain, bloating, and the like, carbohydrate malabsorption could be the culprit.

This condition occurs when your gastrointestinal tract cannot absorb carbohydrates like sugar and starches. Thankfully, there are diets that can help combat these symptoms.

Head to our blog where Dr. Bill Salt further explains carbohydrate malabsorption and the diet changes you can make that can help you get back to feeling your best.

https://www.myguthealthtoday.com/carbohydrate-malabsorption-or-intolerance-the-low-fodmaps-elimination-diet/

#invisibleillnesss #chronicillness #spoonielife #spoonie #invisibleillnessawareness #butyoudontlooksick #spooniestrong #invisibledisease #chronicpain #chronicwarrior #autoimmunedisease #chronicfatigue #chronicallyill #spooniesupport #spoonies #endthestigma #spoontheory #sucroseintolerance #chronicpainwarrior #selfcarepractice #selfcarejourney #wellnessjourney #eatwelllivewell #eatwellfeelwell #eliminationdiet #FODMAPdiet #stomachtroubles

If you're suffering from chronic digestive issues like diarrhea, nausea, stomach pain, bloating, and the like, carbohydrate malabsorption could be the culprit. This condition occurs when your gastrointestinal tract cannot absorb carbohydrates like sugar and starches. Thankfully, there are diets that can help combat these symptoms. Head to our blog where Dr. Bill Salt further explains carbohydrate malabsorption and the diet changes you can make that can help you get back to feeling your best. https://www.myguthealthtoday.com/carbohydrate-malabsorption-or-intolerance-the-low-fodmaps-elimination-diet/ #invisibleillnesss #chronicillness #spoonielife #spoonie #invisibleillnessawareness #butyoudontlooksick #spooniestrong #invisibledisease #chronicpain #chronicwarrior #autoimmunedisease #chronicfatigue #chronicallyill #spooniesupport #spoonies #endthestigma #spoontheory #sucroseintolerance #chronicpainwarrior #selfcarepractice #selfcarejourney #wellnessjourney #eatwelllivewell #eatwellfeelwell #eliminationdiet #FODMAPdiet #stomachtroubles - 38 minutes ago

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Yesterday’s workout is today’s crash. 👍 #reality #potssyndrome #chronicillness
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#medicalmedium #chronicpain #chronicfatigue #chronicallyill #dysautonomia #dysautonomiaawareness #chronicillnesslife #potsiestrong #potsie #invisibleillness #spoonie #spoonielife #spoonieproblems #spooniestrong #spooniewarrior #avenlylaneinspire #lupus #fibromyalgia #chronicfatiguesyndrome #spooniefitness

Yesterday’s workout is today’s crash. 👍 #reality #potssyndrome #chronicillness . . . . . #medicalmedium #chronicpain #chronicfatigue #chronicallyill #dysautonomia #dysautonomiaawareness #chronicillnesslife #potsiestrong #potsie #invisibleillness #spoonie #spoonielife #spoonieproblems #spooniestrong #spooniewarrior #avenlylaneinspire #lupus #fibromyalgia #chronicfatiguesyndrome #spooniefitness - 39 minutes ago

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We're often asked if our tape is safe to use on children, and the answer is yes! 🖤⚡️ We're so happy we were able to provide Emmett's ankle with some extra support for his final playoff game last week! @krizman_family  #HowWeThrive #ThriveTape
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#kinesiologytape #injuries #injuryprevention #lowerbackpain #shoulderpain #kinesiology #sportstherapy #healthblogger #backpainrelief #neckpain #kneepain #injuryrecovery #movementismedicine #movementmatters #movebetter #wellnesscenter #chinesemedicine #functionalmedicine #rejuvenation #ehlersdanlossyndrome #chronicillness #chronicallyill #invisibleillnessawareness #healingvibes #healyourself #makeyourselfapriority #beyourbestyou #maketodaycount ⁠

We're often asked if our tape is safe to use on children, and the answer is yes! 🖤⚡️ We're so happy we were able to provide Emmett's ankle with some extra support for his final playoff game last week! @krizman_family #HowWeThrive #ThriveTape . . . . . #kinesiologytape #injuries #injuryprevention #lowerbackpain #shoulderpain #kinesiology #sportstherapy #healthblogger #backpainrelief #neckpain #kneepain #injuryrecovery #movementismedicine #movementmatters #movebetter #wellnesscenter #chinesemedicine #functionalmedicine #rejuvenation #ehlersdanlossyndrome #chronicillness #chronicallyill #invisibleillnessawareness #healingvibes #healyourself #makeyourselfapriority #beyourbestyou #maketodaycount ⁠ - 39 minutes ago

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⁣⁣⁣⁣⁣⁣⁣⁣⁣ “Making the invisible➡️visible: My least favorite type of blog, so, I added some funny memes in w/the serious. 😬” ⁣⁣⁣⁣⁣
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Hard to share, b/c it’s stuff I tried to hide for so long, but it’s important for education, advocacy, & support. ⁣⁣⁣⁣⁣⁣⁣
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A common misconception is patients who are chronically ill w/invisible illnesses are “faking, exaggerating, lazy, want attention.” This COULDN’T be more wrong.⁣⁣⁣⁣
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My little zebra has been sick for a week. Missed 5 days of school (1st time EVER), 2 doc’s appts. We now have matching “mother-daughter inhalers.” Her fever is gone so she has to go back. I can see how rundown she is & breaks my ❤️ to send her back when she tells me, “but mom, I still feel awful.” Basically, I had to do a mild, “suck it up speech.” (NOT what I said) I told her to try, & go to the nurse & call me if she still feels bad & we’d go back to the doc. I didn’t have the ❤️ to tell her that this is “🦓-life.” We take longer to heal & when our 100% is NOT 100%, adding illness to that makes it even harder to bounce back. She’s already told me, even when she’s not sick, that’s she’s always tired. 😢 Thankfully, she was diagnosed w/Ehlers-Danlos early at 4.5.⁣
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I just told her to do her best & we will take each day at a time, eat super, extra healthy & get good sleep. ⁣⁣
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As adults, those with chronic illness will deal w/this forever. It cuts deep to hear, “must be nice not to have to work/school” 1) many of us do, just not FT anymore, 2) many of us LOVE work; we miss that in our lives! 3) we spend time doing unpleasantries to maintain our lives/health (& getting BILLED for it) or “I wish I could lay around all day!” Again, we are NOT, & if we are able to, that’s like saying to someone who has the flu: “You’ve got the flu? You’re so lucky! I wish I could skip work/school & sleep!” No. NOT what’s happening, not a choice, not “fun,” we aren’t happy about this. We WANT a “normal” life, but we can’t. We make the best of it. We like to smile, laugh, do stuff! We grieve being judged/labeled, & adding more to our “can’t” list. ⁣
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Please feel free to share your experiences. This is a safe place. ⁣
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Gentle hugs!!! 💜💜💜

⁣⁣⁣⁣⁣⁣⁣⁣⁣ “Making the invisible➡️visible: My least favorite type of blog, so, I added some funny memes in w/the serious. 😬” ⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ Hard to share, b/c it’s stuff I tried to hide for so long, but it’s important for education, advocacy, & support. ⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣ A common misconception is patients who are chronically ill w/invisible illnesses are “faking, exaggerating, lazy, want attention.” This COULDN’T be more wrong.⁣⁣⁣⁣ ⁣⁣⁣⁣ My little zebra has been sick for a week. Missed 5 days of school (1st time EVER), 2 doc’s appts. We now have matching “mother-daughter inhalers.” Her fever is gone so she has to go back. I can see how rundown she is & breaks my ❤️ to send her back when she tells me, “but mom, I still feel awful.” Basically, I had to do a mild, “suck it up speech.” (NOT what I said) I told her to try, & go to the nurse & call me if she still feels bad & we’d go back to the doc. I didn’t have the ❤️ to tell her that this is “🦓-life.” We take longer to heal & when our 100% is NOT 100%, adding illness to that makes it even harder to bounce back. She’s already told me, even when she’s not sick, that’s she’s always tired. 😢 Thankfully, she was diagnosed w/Ehlers-Danlos early at 4.5.⁣ ⁣⁣⁣⁣⁣⁣⁣ I just told her to do her best & we will take each day at a time, eat super, extra healthy & get good sleep. ⁣⁣ ⁣⁣ As adults, those with chronic illness will deal w/this forever. It cuts deep to hear, “must be nice not to have to work/school” 1) many of us do, just not FT anymore, 2) many of us LOVE work; we miss that in our lives! 3) we spend time doing unpleasantries to maintain our lives/health (& getting BILLED for it) or “I wish I could lay around all day!” Again, we are NOT, & if we are able to, that’s like saying to someone who has the flu: “You’ve got the flu? You’re so lucky! I wish I could skip work/school & sleep!” No. NOT what’s happening, not a choice, not “fun,” we aren’t happy about this. We WANT a “normal” life, but we can’t. We make the best of it. We like to smile, laugh, do stuff! We grieve being judged/labeled, & adding more to our “can’t” list. ⁣ ⁣ Please feel free to share your experiences. This is a safe place. ⁣ ⁣ Gentle hugs!!! 💜💜💜 - 39 minutes ago

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Here we go again, another system in my body that has just decided to not work properly 🙃 Today I saw a urologist after having bladder pain, retention & frequent UTI’s for quite some time. After just initial testing it is evident that I am not voiding my bladder well at all. ⁣
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So next up some diagnostic testing to see what will be my best option of treatment. I have urodynamics & a cystoscopy scheduled in December. After those tests are done, I’ll potentially get a stimulator placed to help control my bladder and bowels - also Botox injections were discussed. ⁣
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I’m not thrilled to have another thing on my plate to worry about, but hopefully I’ll find some relief. Also it’s okay to talk about these “taboo” topics, there’s nothing wrong with advocating for my wonky bladder 🤪 ⁣
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#Urodynamics #Cystoscopy #EhlersDanlosSyndrome #Hypermobility #EDS ⁣
#Dysautonomia #POTS #HyperPOTS #MastCellActivationSyndrome #Gastroparesis #VonWillebrands #PCOS #Endometriosis #Neuropathy #PTSD #Bipolar #ChronicallyIll #RareDisease #Spoonie #Disabled #InvisibleIllness #ButYouDontLookSick #ZebraStrong

⁣ Here we go again, another system in my body that has just decided to not work properly 🙃 Today I saw a urologist after having bladder pain, retention & frequent UTI’s for quite some time. After just initial testing it is evident that I am not voiding my bladder well at all. ⁣ ⁣ So next up some diagnostic testing to see what will be my best option of treatment. I have urodynamics & a cystoscopy scheduled in December. After those tests are done, I’ll potentially get a stimulator placed to help control my bladder and bowels - also Botox injections were discussed. ⁣ ⁣ I’m not thrilled to have another thing on my plate to worry about, but hopefully I’ll find some relief. Also it’s okay to talk about these “taboo” topics, there’s nothing wrong with advocating for my wonky bladder 🤪 ⁣ ⁣ •⁣ ⁣ •⁣ ⁣ •⁣ ⁣ ⁣ #Urodynamics #Cystoscopy #EhlersDanlosSyndrome #Hypermobility #EDS#Dysautonomia #POTS #HyperPOTS #MastCellActivationSyndrome #Gastroparesis #VonWillebrands #PCOS #Endometriosis #Neuropathy #PTSD #Bipolar #ChronicallyIll #RareDisease #Spoonie #Disabled #InvisibleIllness #ButYouDontLookSick #ZebraStrong - 40 minutes ago

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