Carrie - MySeveralWorlds - Artist, Author, Advocate
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carriekellenberger.bsky.social
Carrie - MySeveralWorlds - Artist, Author, Advocate
@carriekellenberger.bsky.social
410 followers 240 following 1.3K posts
✒️ I write about life with severe #ChronicPain related to #SpA #PsA #MEcfs #fibromyalgia #APS
🦋 MySeveralWorlds.com
👩‍🦼 #DisabilityAdvocate
🤝 Team Fibro & Spondylitis
🎨 DISABLED ARTIST
🌴 https://linktr.ee/myseveralworlds
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carriekellenberger.bsky.social
Carrie - MySeveralWorlds - Artist, Author, Advocate @carriekellenberger.bsky.social · Nov 16
👩‍🦼 Hey all! Welcome to #MySeveralWorlds. I'm grateful you're here. I'm a 🇨🇦author, artist, & #DisabilityAdvocate in 🇹🇼. I've been chronically ill & disabled since '09. Let me introduce myself. First, I love meeting new people! You make MSW a better place to be.
#AxSpA #PsA #Fibromyalgia #ChronicPain
I'm Carrie Kellenberger and I'm the author of MySeveralWorlds.com. I'm fiercely fighting inflammatory arthritis: AxSpA (Ankylosing Spondylitis) and Psoriatic Arthritis. Plus osteoarthritis. I have long brown hair and grey eyes. I'm wearing a blue shirt that matches my Blue Suede Shoes NeoWalk cane. My Several Worlds emblem is a raspberry and blue hummingbird in flight. Carrie is seated in her Karma manual wheelchair. She uses a power wheelchair now. She's wearing a white shirt and a colorful shirt. The text on the image says, "Chronic pain is devastating. It affects every single aspect of your life, and the only thing we can do is continue... Pick yourself up everyday and keep going. You reach a point many times when you don't know how to keep going, but you do. Never give up on hope!" Carrie Kellenberger, MySeveralWorlds.com In one photo Carrie is seated in her power wheelchair. In the second photo she is holding up her newly published "A Coloring Adventure for Spoonies" coloring book. This image is a welcome image that explains Carrie's life as the blogger behind MySeveralWorlds.com and as achronically ill and disabled author and artist. The text on the image says, "I'm Carrie Kellenberger a chronically ill and disabled Canadian author and artist who has called Taiwan home for the past two decades. MySeveralWorlds.com was established in 2007. It serves to connect, educate, and inspire chronically ill and disabled people around the world, while also providing up-to-date information for patients. As a multi-talented artist and advocate who has worked in everything from jewelry design to paper cutting and collage work, my art studio has something to offer everyone and my website strives to answer questions about life with chronic illness and disability. I'm an award winning health blogger on the topics I write about. MSW officially launched in 2007 as a travel and culture website focused on life in Asia. It held onto its top 50 travel blogs in the world spot for many years before I had to give up traveling due to chronic illness and disability. Most people would've given up, but not me. This is MY SEVERAL WORLDS and I turned it into a website that focuses on immigrant life in Asia, a patient network that assists, educates, and inspires patients around the world, and it offers a niche topic in providing insight into navigating foreign healthcare systems. My advocacy work has been recognized worldwide over the past 10+ years. In this photo, I'm holding a Lifetime Achievement Award for serving the fibromyalgia community for more than a decade.
carriekellenberger.bsky.social
🪓 Who is with me on the 'dwarf with a pick axe' pain? This time of year is always brutal!

I made an image for a fan of this page. Sandie's words to describe pain earlier this month were, "That would be "my little dwarf with a pick axe" pain..."

Perfect IMO!
#MySeveralWorlds
🪓 Who is with me on the 'dwarf with a pick axe' pain? This time of year is always brutal! I made an image for a fan of this page. I can't tag her as we're not friends but her words resonated deeply enough that I had to create it in detail. Sandie's words to describe pain earlier this month were, "That would be "my little dwarf with a pick axe" pain..." So appropriate! Here he is for #PainAwareness and for nerve pain awareness. #MySeveralWorlds #ChronicPainIs #NERVEmber
November 27, 2025 at 11:21 AM
carriekellenberger.bsky.social
Things I Didn't Know Were Symptoms of #CPTSD
✔️ Getting overwhelmed
✔️ sharp pains in back/neck
✔️ "high anxiety" not "generalized anxiety"
✔️ Thinking up stories before bed
✔️ Trouble falling asleep
✔️ Racing heart
✔️ Exaggerated startle response
✔️ Purposefully "tanking" a bad day
Credit Unknown
Things I Didn't Know Were Symptoms of C-PTSD ✔️ Getting overwhelmed in crowds ✔️ Getting upset or angry at a loud alarm ✔️ Ordinary nightmares (that have nothing to do with the circumstances, just stupid nightmares much more often than the average person) ✔️ Getting sharp pains in your back/neck/collarbones that make it hard to breathe (due to hypervigilance/constant high anxiety) ✔️ Learning that "high anxiety" does not mean "generalized anxiety" like other people have with panic attacks and not feeling that they can accomplish thing. PTSD anxiety just means this frenetic energy that makes you want to talk/think/do things (even as an introvert) to avoid stopping. ✔️ Feeling constantly bored like you have to chase after something, even if you're just at home: I spend hours on tumblr, pinterest, watching tv, reading books, making art, never just laying there alone...because if you stop...the darkness is there ✔️ Thinking up stories before bed. This is a symptom of high anxiety because you're trying to calm down and fall asleep in a "safe world" where people are looking out for you and caring for you. ✔️ Trouble falling asleep (which is distinct from insomnia) because turning off electronics etc. doesn't help since your heartrate/fight or flight response is engaged ✔️ Periods of racing heart (mine has gotten to 120bpm for five hours) that make you feel like you're waiting for something to happen ✔️ Exaggerated startle response. When I was a kid I used to hide behind corners to surprise my sisters. Two years ago my friend hid under my desk to scare me. I literally screamed, fell out of the chair, and started crying. She was laughing because she thought the joke went well, and then got concerned because I kept crying. ✔️ Purposefully "tanking" a bad day with sad music/tv/movies/books because it "was already ruined anyway" Credit Unknown
November 27, 2025 at 4:13 AM
carriekellenberger.bsky.social
"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...
Erin Gilmer: “Us” vs “them”: the under-served patient speaks up
“High-tech digital medication reminders are not what I need when I’m poor and can’t afford medicine.” If big health conferences are going to host “experts” speak…
myheartsisters.org
November 26, 2025 at 10:28 AM
carriekellenberger.bsky.social
Carrie shares her story of life with D2T #axSpA as an expat in #Taiwan. She opens up about life with treatment-resistant symptoms & talks about how her advocacy meshes with #MySeveralWorlds which was launched in 2007. @arthritischeryl.bsky.social
🔗
arthritis.theenthusiasticlife.com/2024/12/19/a...
Art, Advocacy, and Adaptation: Carrie’s Journey with Difficult to Treat Axial Spondyloarthritis - Arthritis Life
Listen Now: Watch Now: Summary: In episode 150 of The Arthritis Life Podcast, Carrie shares her inspiring journey of living with “difficult-to-treat” axial spondyloarthritis while building a new life ...
arthritis.theenthusiasticlife.com
November 26, 2025 at 10:26 AM
carriekellenberger.bsky.social
How our noisy world is seriously damaging our health

"In Barcelona there are an estimated 300 #HeartAttacks and 30 deaths a year just from traffic noise, according to researcher Dr Maria Foraster, who has reviewed evidence on noise for the WHO."
🔗
www.bbc.com/news/article...
Noise: The invisible killer in all our lives
The BBC's James Gallagher investigates the invisible killer all around us.
www.bbc.com
November 26, 2025 at 10:11 AM
carriekellenberger.bsky.social
#PainAwareness

#ChronicPain & #MentalHealth are intricately interwoven. Here are just 5 ways life w/ pain can detrimentally affect mental #wellbeing.
🔗
invisiblyme.com/chronicpain-...

Via @invisiblyme.bsky.social

#spoonie #invisibleillness
Chronic Pain & Mental Health : 5 Detrimental Effects
Chronic pain & mental health are intricately interwoven. Here are just 5 ways life with pain can detrimentally affect our mental wellbeing.
invisiblyme.com
November 26, 2025 at 10:10 AM
carriekellenberger.bsky.social
When you live with #ChronicAnxiety, sometimes you want to switch your brain off.

"It’d be nice if I could switch my brain off for a couple hours. No #anxiety, no panic attacks, no #depression, no worries, no pain."
🔗
buff.ly/37pXrBD

#MentalHealthAwareness
@achronicvoice.com
buff.ly
November 26, 2025 at 10:09 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
womensartbluesky.bsky.social
Cal Lane, Canadian trained welder and metal artist, transforms common tools and also industrial steel products into intricate sculptures #WomensArt
Photo of two spades against a white surface, the metal blade part has been cut into lace like patterns
November 26, 2025 at 6:07 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
chronicallynikki.bsky.social
Hermit-Mode
Sometimes with #chronicillness I self-isolate. As in ‘I’m now hermit-mode for the weekend’ because I need to recover and engage in some serious self-care.
November 25, 2025 at 10:26 PM
carriekellenberger.bsky.social
"Fibromyalgia May Be Invisible, But It's Not Silent...

If only you could hear it
then maybe you'd understand it."

Credit: Via the one and only Beth at @dear fibromyalgia

#FibromyalgiaAwareness #DearFibromyalgia #ChronicPain #MySeveralWorlds #InvisibleIllness
"Fibromyalgia May Be Invisible, But It's Not Silent. It causes your head to beat in deafening pain. It causes your ears to buzz and ring in your head. It causes your back and spine to scream in pain. It causes knife-sharp stabbing that makes your hips shout from the agony. It causes your legs to moan with bone-deep aching. It causes your feet to yell out every time you step on them from hot poker-like sensations. It makes your intestines rumble and bellow from nausea and IBS. Widespread muscle spasms roar from cramping...and this is only the beginning. Fibro is so loud, and we often can't turn down the volume. We can't possibly live in silence. If only you could hear it then maybe you'd understand it." Credit: Via the one and only Beth at @dear fibromyalgia #FibromyalgiaAwareness #DearFibromyalgia #ChronicPain #MySeveralWorlds #InvisibleIllness
November 26, 2025 at 4:19 AM
carriekellenberger.bsky.social
New ID Numbers for Foreigners: A Bureaucratic Misfire? "This inconvenience is...consequential for Carrie Kellenberger. The former chairwoman of the Canadian Chamber of Commerce in Taiwan requires frequent hospital treatment for #AxSpA." #Taiwan #Disability

topics.amcham.com.tw/2025/11/new-...
New ID Numbers for Foreigners: A Bureaucratic Misfire? - Taiwan Business TOPICS
A reform meant to streamline life for foreign residents has instead exposed lingering gaps in Taiwan’s digital and administrative systems. Many services still fail to recognize the new ID numbers.
topics.amcham.com.tw
November 25, 2025 at 7:03 AM
carriekellenberger.bsky.social
Has anyone else been waiting years/decades for a tiny bit of health to come back? I have. I keep hoping if I get a tiny bit back, I can put my life back on track.

"WAITING FOR SPOONS BE LIKE...
Some day my
Spoons will come"

Credit: Unknown
#ChronicTruths #MySeveralWorlds
Has anyone else been waiting years/decades for a tiny bit of health to come back? I have. I keep hoping if I get a tiny bit back, I can put my life back on track. "WAITING FOR SPOONS BE LIKE... Some day my Spoons will come" Description: Snow White waiting for her prince to come. Credit: Unknown #ChronicTruths #MySeveralWorlds #ChronicIllness #LifeWithME #FibromyalgiaAwareness #SpoonieLife
November 25, 2025 at 4:23 AM
carriekellenberger.bsky.social
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
told @gohealio.bsky.social
buff.ly
November 24, 2025 at 4:55 PM
carriekellenberger.bsky.social
"Disabled people & 'being controlling'
"When you interact w. a disabled person who is 'being demanding' - look again. Maybe all they are asking for is basics that will allow them to function, to be part of society, & to not get worse."
🔗
www.stickmancommunications.co.uk/post/disable...

#disability
Disabled people, self management, and 'being controlling'
Disabled people are often seen as demanding and controlling - here I look at an example of why this might be, and what is really going on.
www.stickmancommunications.co.uk
November 24, 2025 at 11:22 AM
carriekellenberger.bsky.social
What doctors wish patients knew about menopause
“When you have a decrease in estrogen, you can have hot flashes, night sweats, anxiety, other emotional symptoms, insomnia, changes in your sex drive, & a host of symptoms. It's individual to the patient."
🔗
www.ama-assn.org/delivering-c...
What doctors wish patients knew about menopause
Menopause is often accompanied by discomfort, though symptom severity does vary. Three ob-gyns share how to navigate this transformative period.
www.ama-assn.org
November 24, 2025 at 11:21 AM
carriekellenberger.bsky.social
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...
Half of the surveyed in Taiwan experience pain weekly
english.news.cn
November 24, 2025 at 4:27 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
drdoylesays.bsky.social
The big daily task for many trauma survivors that goes unacknowledged by others in their sphere is how to realistically manage thoughts & feelings, while coping w/ physical fatigue, pain, & other limitations not even their own health care providers adequately understand or treat.
November 22, 2025 at 11:41 PM
carriekellenberger.bsky.social
❓What do you think about the most?

THINGS PEOPLE DON'T TALK ABOUT WITH #ChronicIllness...

👉 Grief for your "old life"
👉 Having to rely on benefits or loved ones
👉 Constantly feeling behind in life
👉 The impact our physical health has on our mental health
👉 How expensive it is
@the_migraine_life
What do you think about the most with chronic illness? THINGS PEOPLE DON'T TALK ABOUT WITH CHRONIC ILLNESS... 👉 Grief for your "old life" 👉 Having to rely on benefits or loved ones 👉 Feeling unworthy of love 👉 Minimizing symptoms to make others feel better 👉 Constantly feeling behind in life 👉 Worrying about posting our good days on social media 👉 How hard we find answering, "How are you? 👉 The impact our physical health has on our mental health 👉 How expensive it is Credit: @the_migraine_life #ChronicTruths #ChronicIllness #ChronicPain #Acceptance
November 24, 2025 at 4:05 AM
carriekellenberger.bsky.social
"Skin-related manifestations are common & may be the 1st signs of #APS. 40% of APS pts who hv #cutaneous manifestations go on to develop multisystemic #thrombotic events which underscores the need to be extra vigilant" buff.ly/XofExpO

@achronicvoice.com
#AntiphospholipidSyndrome
buff.ly
November 23, 2025 at 11:13 AM
carriekellenberger.bsky.social
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/...
Invisible, incurable, constantly in pain: This is what living with fibromyalgia is like
Imagine doctors insisting that you are fine, when your body is engulfed in pain. Four fibromyalgia patients tell CNA Insider about their struggles with this invisible illness and how they draw strengt...
www.channelnewsasia.com
November 23, 2025 at 11:11 AM
carriekellenberger.bsky.social
A doc on X is trolling me for writing about #fibromyalgia. I got a DM from him telling me why I shouldn't follow a #PainPatient who talks about patients losing access to pain meds. Dude thinks I should be looking at fibro with his research from 1990. 😂Times have changed! Glad my BS meter is high!
November 23, 2025 at 6:17 AM
carriekellenberger.bsky.social
Do you have a loved one with #ChronicIllness and you want to buy them a gift? Here are some gift ideas for people with chronic illness designed by people with chronic illness.
🔗
buff.ly/41cRnqp

via @fibrobloggers #FibromyalgiaAwareness
buff.ly
November 23, 2025 at 6:14 AM
carriekellenberger.bsky.social
"I don't think healthy /not-chronically-ill people realize how many years of life can disappear while waiting to see a new doc, waiting for test results & insurance approval, waiting for a new treatment to work & another & another forever." @brickandbutton

#ChronicIllness #MySeveralWorlds
"I don't think healthy /not-chronically-ill people realize how many years of your life can disappear while you're waiting to see a new doctor, waiting for test results, waiting for insurance approval, waiting for a new treatment to work and another and another forever." Credit: Lynn @brickandbutton #ChronicIllness #MySeveralWorlds #ChronicIllnessReminders #TheChronicLife #DisabilityMatters
November 23, 2025 at 4:35 AM
carriekellenberger.bsky.social
"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...
‘Silence can be incredibly hurtful’: How to talk to someone about their chronic illness
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
November 22, 2025 at 10:58 AM
carriekellenberger.bsky.social
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.
@achronicvoice.com
buff.ly
November 22, 2025 at 10:56 AM