carriekellenberger.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

#MECFSis my cage. All it took was a virus for #ME to take me prisoner & become my cage. @openmedf.bsky.social "Every photo helps raise visibility, reduce stigma & reach others. Let’s make ME/CFS visible. #MillionsMissing #MyalgicE #MySeveralWorlds #pwME #MECFSAwareness #MEAwarenessMonth

submitted 11 hours ago • 1 comment

submitted 11 hours ago • 6 comments

Being Refused Treatment by AE by @achronicvoice.com "Sharp pain struck & I knew. After 4 hours, it was time. A well rehearsed routine on auto pilot. I put on a sweater. In went water, phone, a powerbank, my wallet & a bag w zippers; you don’t want things falling out." buff.ly/2YV4myQ

submitted 18 hours ago • 0 comments

"Being young & sick is sort of like being elderly, except we lack the reflection on all the great times and great things we did long ago. Instead, we watch our peers make the memories & strides they'll look back on fondly, bitterly observing & praying for our chance. Our time." ~Credit Unknown

submitted 22 hours ago • 0 comments

"Silence can be incredibly hurtful’: How to talk to someone about their #ChronicIllness While it may feel impolite to ask after someone’s ill-health, for those living with chronic conditions never being asked can feel ruder still." 🔗 www.theguardian.com/lifeandstyle...

submitted 2 days ago • 0 comments

@achronicvoice.com #Happiness & #ChronicPain CAN co-exist: buff.ly/2CEyLpE "For years I have been escaping, fighting, denying & begging w. pain. They worked for a time but aren’t long-term solutions. I’ve realised that I need to accept that pain will always be a part of my life."

submitted 2 days ago • 1 comment

#AxialSpA & #fibromyalgia are recognized as being as painful as or more painful than Migraine Heart attack Childbirth (with training) Non terminal cancer Imagine living with one of the most painful diseases in the world and it's thought to equal to or higher than pain experienced during childbirth

submitted 2 days ago • 1 comment

“We don’t touch able-bodied people or move them out of the way. The same rule applies with people in #wheelchairs. Don’t touch us and don’t touch or move a #wheelchair without consent”: buff.ly/43wg8x0 by @carriekellenberger.bsky.social #DisabledPeople #awareness #traveling

submitted 3 days ago • 1 comment

"It is only when we truly know & understand that we have a limited time on earth & that we have no way of knowing when our time is up that we begin to live each day to the fullest, as if it were the only one we had." ~Elisabeth Kübler-Ross #Acceptance #Disability #ChronicIllness

submitted 3 days ago • 0 comments

Credit @mindfullyevie "What it's like to be disabled Imagine having to plan every trip outside the house. You make sure it isn't too long that it makes you sick... You put in rest periods before & after to recover. All so you can go out & be part of the 'normal' world... #ChronicIllness #Disability

submitted 4 days ago • 4 comments

It is estimated that nearly 10 million adults in #Taiwan aged 18+ are affected by #pain. The 3 most common types reported are muscle soreness, headache & joint pain, according to the latest survey on pain perception & behaviors in Taiwan. #ChronicPain 🔗 english.news.cn/20240904/ad8...

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Types of #SleepProblems associated with #fibromyalgia "Recent studies have shown that more than 90% of patients with fibromyalgia complain of sleep problems." Via www.news-medical.net/health/Fibro... #fibromyalgia #SleepDisorders #FibromyalgiaProblems

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My company, Reach To Teach, is interviewing now for ESL positions starting in Seoul, South Korea. We've worked in the ESL industry for 20 years and we're proud of the schools we're affiliated with. Earn up to 2.7 million Won per month, plus free housing, flights, and more! buff.ly/49iOTDi

submitted 5 days ago • 0 comments

Young adults in Singapore: “Even if I were to wear the #disability lanyard, I’m...sceptical people would give up their seat for me.” Pang is 25. He has #AnkylosingSpondylitis. We have many similar stories in #Taiwan with 'Who gets a disability seat?' 🔗 www.channelnewsasia.com/cna-insider/...

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“A lot of people think that #RheumatoidArthritis is just bad #arthritis, and it’s not. It’s systemic. It can attack your lungs and kidneys and you can get vasculitis. The chances of going into remission are very low, probably less than 5%." 🔗 www.ama-assn.org/delivering-c...

submitted 5 days ago • 0 comments

"Complex trauma survivors didn't just survive trauma one time. We survived it over and over again so that it became so ingrained in us, changed our core beliefs about ourselves, & set our lives on a trajectory we were never meant to go on... I'm on this journey with you. Keep holding on."

submitted 5 days ago • 1 comment

Melissa Reynolds, author of Mindfully Yours, Ella. Melissa's latest book is her first work of fiction. It's about a woman living with #ChronicIllness and how she finds love and support. #Spoonie friends, you want to read this book! Learn more here 🔗 buff.ly/sc7D0X0 #Fibromyalgia #ChronicPain #MECFS

submitted 6 days ago • 0 comments

#Spoonie confession "I mourn my death everyday. I am not the person I was before this illness. She's gone. And I had to bury her. The person I thought I would become - I attend her funeral every day. Every. Single. Day. I miss me." ~ Via Spoonie Saga - not medical advice #ChronicIllness #Disability

submitted 7 days ago • 0 comments

"One of the biggest challenges with chronic illness is learning to live with the limitations." ~Carrie Kellenberger I wrote this in 2016. I can't stand like that now. What kind of limitations do you live with? 🔗 www.myseveralworlds.com/2016/07/24/l... #ChronicIllness #Fibromyalgia #disability

submitted 7 days ago • 0 comments

A travel tale of our journey from Tbilisi to the tiny mountain village of Kazbegi in the Caucasus Mountains, just a short 10km away from the Russian border. What a trip this was! Read it:

submitted 8 days ago • 0 comments

Name changes for #AxialSpondyloarthritis and #Sjogren's a big deal! #axSpA has come to encompass the spectrum of disease formerly divided into non-radiographic vs. radiographic axial SpA. 🔗 buff.ly/3CISx4v #AnkylosingSpondylitis #nrAxSpA @asintfed.bsky.social @gohealio.bsky.social

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“The whole thought process of a #chronicallyill person is vastly different from a “healthy” person… they have no idea what it’s like—there may be 20 or more decisions you need to process before you can walk out your door.” buff.ly/46vXYyv @KimberlyJPenix #Spoonie

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Arthritis leg pain & fibromyalgia #LegPain: What's the difference? How can we tell? It's common to get #InflammatoryArthritis and #fibromyalgia mixed up, but there are differences between the two that patients should know. 🔗 buff.ly/UbHIyGC

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"We often tell ourselves or others to be strong. Instead of instilling inspiration... it becomes another standard we have to meet. You don’t have to be strong all the time. One small step forward is still a powerful act." Via @achronicvoice.com 🔗 www.achronicvoice.com/2018/05/13/y...

submitted 9 days ago • 2 comments

“ #Diseases don’t care if they’re only a “woman’s disease” or only a man’s. The #stigma that surrounds those words really hurt and only further sends a person into depression and anxiety and worse": buff.ly/DPsy4ja via @carriekellenberger.bsky.social #MensHealth #awareness #ChronicIllness

submitted 13 days ago • 1 comment

"I just want a day where it feels like I'm not falling apart anymore." ~Credit Unknown

submitted 11 days ago • 0 comments

Stress of any kind often exacerbates symptoms and flare-ups. I can recognize a stress reaction within minutes: my heart rate jumps, I feel nauseous; I get all sweaty and panicky, & my IBS reactions are immediate. Read my stress busting techniques here: buff.ly/6BEmkek

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"When I think about what will be presented at healthcare conferences, I am frustrated. I don’t want an app to tell me how to track my fitness goal, but that’s what is popular. Digital med reminders are not what I need when I’m poor & can’t afford meds." myheartsisters.org/2014/07/13/e...

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I use art to cope with #ChronicIllness. I adore flower arranging especially #ikebana. Have a look at 14 Japanese floral arrangements along with my comments on my creative process with living art 🔗 buff.ly/33LTe9h #ArtForArthritis #axSpA #ArtTherapy #pwME #ChronicPain #WomensArt

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@achronicvoice.com The Surprising Thing About Chronic Pain buff.ly/2Lvfo5n I’ve lived w. #ChronicIllness for 20 years & have gone through flares that are so disabling that I imagine this is what hell feels like. IMO, one cannot deal w. #ChronicPain when they’re defeated mentally.

submitted 11 days ago • 1 comment

Just call me Leeloo! Credit Unknown Doctor: You can't possibly have that many diagnoses. Me: MULTIPASS Once you get one autoimmune disease others like to join the party. You never get just one #AutoimmuneDisease. Do you have a multipass? #AxApA #PsoriaticArthritis #APS #AutoimmuneDisease

submitted 11 days ago • 2 comments

One of my first symptoms was not being able to do the activities I had done for years. My last Zumba left me on the floor for an hour. In 2014 I volunteered at an event. The next day I had #PEM. There are two examples of normal, things that made me sick. That's when I starting pushing for answers.

submitted 13 days ago • 0 comments

I struggle with this every day. It's a part of life that every disabled person goes through. I have to work really hard at reminding myself that asking for a clear sidewalk or a usable ramp is not complaining. It's a basic human right. #Disability #DisabledLife #DisabilityInclusion #ADACompliant

submitted 14 days ago • 0 comments

@achronicvoice.com The Surprising Thing About Chronic Pain buff.ly/2Lvfo5n I’ve lived w. #ChronicIllness for 20 years & have gone through flares that are so disabling that I imagine this is what hell feels like. IMO, one cannot deal w. #ChronicPain when they’re defeated mentally.

submitted 15 days ago • 1 comment

Find a weirdo who looks at you like this... 🖤🐈‍⬛#BlackCatLovers🐈‍⬛🖤

submitted 15 days ago • 2 comments

We rarely see #fibromyalgia in the news here: #Singapore "No two patients are the same. Clara likened her #pain to numbness crawling from her neck. Daisy struggles with #BrainFog. Jin Jie endures a deep-seated ache. Rina, a stabbing sensation. www.channelnewsasia.com/cna-insider/...

submitted 15 days ago • 0 comments

Me, every morning when hubs started asking too many questions and the coffee & meds haven't kicked in... Credit: Chronically Candid Memes "No I am not listening to you... All my brain power is going towards staying upright." Painting: The Faithful Artist: Charles Emile Hippolyte Lecomte-Vernet

submitted 15 days ago • 0 comments

Last night I tried to get in an Uber for the first time in years on the driver's side of the car. I couldn't do it. My leg simply doesn't bend the way it needs to in order to sit on that side. So I guess that's that. More loss of mobility every year. #axSpA #PsoriaticArthritis #EverydayChallenges

submitted 16 days ago • 0 comments

Non verbal signs of pain: 😟 Facial expressions 🧍‍♀️Body posture 😭 Crying / sounds of distress 🫥 Withdrawal from activity 🤬 Mood changes - anger, aggression, irritability 😕 Confusion 👐 Hand movements 🥵 Excessive sweating Carrie, MySeveralWorlds.com #PainAwareness #LifeWithPain #ChronicPain

submitted 16 days ago • 0 comments

Credit: Lupie Linda #ChronicIllness is like sharing a room with a monster at periodically malls you and then crawls back under your bed. Even when it's not hurting you directly, you know it's there with you, in your space. You can hear it, breathing, under the mattress..."

submitted 16 days ago • 1 comment