Carrie - MySeveralWorlds - Artist, Author, Advocate
LightNews LightNews
banner
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
Posts Replies Media Videos
Pinned
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
Symptoms of
#MastCellActivationSyndrome

✔️ Skin rash or flushing
✔️ Itching or hives
✔️ Runny nose, sneezing,
congestion, or watery eyes
✔️ Abdominal cramping, nausea, or vomiting
✔️ Diarrhea or constipation
✔️ Low blood pressure, dizziness, or fainting
...

Crwdit: Not Just Bendy

#MCAS #POTS #EDS
Symptoms of #MastCellActivationSyndrome ✔️ Skin rash or flushing ✔️ Itching or hives ✔️ Runny nose, sneezing, congestion, or watery eyes ✔️ Abdominal cramping, nausea, or vomiting ✔️ Diarrhea or constipation ✔️ Low blood pressure, dizziness, or fainting ✔️ Facial swelling ✔️ Shortness of breath or wheezing ✔️ Bloating or abdominal pain ✔️ Joint pain or swelling ✔️ Generalised widespread pain ✔️ Headaches ✔️ Palpitations or irregular heart rate ✔️ Excessive fatigue ✔️ Anxiety or panic attacks ✔️ Cognitive impairment or memory loss ✔️ Night sweats ✔️ Fever ✔️ Hair loss ✔️ Unexplained weight gain or loss ✔️ Unexplained bruising or bleeding ✔️ Heavy & painful periods Crwdit: Not Just Bendy #MCAS #POTS #EDS
November 18, 2025 at 4:19 AM
carriekellenberger.bsky.social
"When you first become ill, they will show you sympathy. They'll be understanding when you have trouble keeping up.

But once your illness becomes a chronic condition, they show impatience and frustration."

@ mast_cell_activation_syndrome

#TheChronicLife #MCAS #POTS #MySeveralWorlds #PainWarrior
People Get Tired Of You Being Sick "When you first become ill, they will show you sympathy. They'll send you cards and hope you "get well soon." They'll call or text to check in and see how you're doing. They'll cut you slack. They'll be understanding when you have trouble keeping up. But once your illness becomes a chronic condition, they wonder why you can't get better. They show impatience and frustration. They stop trying to include you in plans. They ask why you aren't "trying harder." They don't get it. They just want you to be abled again so that you're not inconveniencing them. People get tired of you being sick, but they don't stop to think that you're probably fucking tired of being sick, too. They don't take the time to think about how you'd love to "just get over it." They don't care enough to realize you didn't choose this." Credit: mast_cell_activation_syndrome #TheChronicLife #MCAS #POTS #MySeveralWorlds #PainWarrior
November 17, 2025 at 4:46 AM
carriekellenberger.bsky.social
Reasons why chronically ill people are so tired

✔️ They're chronically ill
✔️ 4,014 doc appts
✔️ Taking a shower = marathon
✔️ Medical admin is a part-time job
✔️ blood
✔️ #MedicalTrauma drains your energy
✔️ Masking & advocating are exhausting
✔️ #ChronicPain drains your energy
@ Spoonie Saga
Reasons why chronically ill people are so tired ✔️ They're chronically ill ✔️ 4,014 doctor appointments ✔️ Taking a shower = running a marathon ✔️ Medical admin is at least a part-time job ✔️ Doctors keep taking all their blood lol ✔️ #MedicalTrauma drains your energy ✔️ Masking your illness is exhausting ✔️ Did I mention they're ill? ✔️ Advocating for yourself is also exhausting ✔️ #ChronicPain drains your energy too Credit: Spoonie Saga Not medical advice. #ChronicIllnessAwareness #MySeveralWorlds
November 16, 2025 at 4:18 AM
carriekellenberger.bsky.social
My #AxSpA Story for the Spondylitis Association of America

When I was diagnosed w. #AnkylosingSpondylitis in 2009, we didn’t know the #DelayToDiagnosis meant I had damage that couldn't be fixed. Learn how robotic exoskeletons help patients like me. #disability
🔗
spondylitis.org/patient-stor...
Carrie Kellenberger - Spondylitis Association of America - Ankylosing Spondylitis
I never expected to lose my mobility, but that is what happened in July of 2014 when my body gave out on me and I could no longer move the way I used to. Year by year, I lost my energy to move and soo...
spondylitis.org
November 15, 2025 at 7:43 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
womensartbluesky.bsky.social
The artwork of Jackie Morris, Wales based award-winning writer, artist and illustrator #womensart
Painting of a sitting fox facing left looking right with a butterfly balanced on its nose and another flying to the left, all against a gold background
November 15, 2025 at 5:34 AM
carriekellenberger.bsky.social
"If you are feeling like a failure because you are unable to accomplish something due to health issues, poverty, or even lack of time and energy remember that you did not fail. The system failed you! You are NOT a failure."

Via theferalmountainwitch

#DisabilityAwareness #MySeveralWorlds
"If you are feeling like a failure because you are unable to accomplish something due to health issues, poverty, or even lack of time and energy remember that you did not fail. The system failed you! You are NOT a failure. We should have a system that supports people that are struggling, not one that leaves them to drown and then labels it an individual failure to distract from the fact that the system is built to benefit the few at the expense of the many." Credit: theferalmountainwitch #DisabilityAwareness #DisabilityInclusion #MySeveralWorlds
November 15, 2025 at 4:08 AM
carriekellenberger.bsky.social
" #ChronicIllness can cause angry mood swings where you're just pissed off at the whole fact that your sick Then there are the needy mood swings where you just need someone to listen and to tell you they care."
@LupieLinda
#ChronicTruths #MentalHealth #anxiety #depression #MentalHealthMatters
"Chronic illness can cause angry mood swings where you're just pissed off at the whole fact that your sick, you're pissed off that you can't do everything you want, you're pissed off that some doctors and people are idiots about your illness and you're pissed off basically at the world and everything in it. Then there are the needy mood swings where you just desperately need someone to listen to you talk and to tell you they care about you and to coddle you and just be lovey with you. These mood swings happen partly because of lots of medication but mostly just from fighting to survive." Credit: @LupieLinda #ChronicTruths #ChronicIllness #MentalHealth #anxiety #depression #MentalHealthMatters
November 14, 2025 at 4:40 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
drdoylesays.bsky.social
Trauma informed medical providers understand & account for the fact that not only can chronic or complex medical conditions be exhausting, they can also make survivors vulnerable to "functional freeze" & "flop" trauma responses that exacerbate fatigue & brain fog.
November 13, 2025 at 11:39 PM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
drdoylesays.bsky.social
The "freeze" trauma response is a nervous system-deep manifestation of what psychologists call "learned helplessness"-- the reflexive paralysis we experience when we perceive every option available to be associated w/ pain or unacceptable risk.

Trauma responses aren't "choices."
November 13, 2025 at 11:37 PM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
drdoylesays.bsky.social
It's hard to leave someone or something in the past if there's still grief or anger entwined in our story w/ them.

Our nervous system doesn't love moving on unless & until we acknowledge & honor those feelings as legitimate & important-- which, btw, they absolutely are.
November 13, 2025 at 3:35 AM
carriekellenberger.bsky.social
15 signs my #MentalHealth is getting bad again: Irritable, unable to focus, mood changes, anxiety, suicidal thinking, physical tension in the body, crying all the time...

What's a sign your mental health is getting bad?

#MentalHealthAwareness #PTSD #depression #MySeveralWorlds #NERVEmber
15 signs my #MentalHealth Is getting bad again *Irritable *Unable to focus *Racing thoughts & mood changes *Endless scrolling *Extreme anxiety *Suicidal thinking *Feeling not good enough or a burden *Easy to anger *Feeling numb *Zoning out *Loss of appetite *Intrusive thoughts *Physical tension in the body and headaches *Inability to cope with daily problems or stress *Crying all the time *Unable to get out of bed *Unable to sleep *Stop cleaning up after yourself *Never-ending to-do list What's a sign for you that your mental health is getting bad again?
November 13, 2025 at 3:36 AM
carriekellenberger.bsky.social
Things to Do On Bed Rest: Education #Advocacy & Volunteering ~ @achronicvoice.bsky.social

"Even if you aren’t a blogger, you can help. Reading & resharing blog posts from other #ChronicIllness & #disabled bloggers helps raise awareness."
🔗
buff.ly/3OGUdPd

#StrongerTogether #BloggingCommunity
buff.ly
November 12, 2025 at 9:52 AM
carriekellenberger.bsky.social
HERE'S WHAT LIVING WITH #ChronicIllness HAS TAUGHT ME

Some days you'll crash after a 5 min walk, other days you'll do more
People will misunderstand
Rest is part of care
No one's opinion is more important than your own
Credit @ARTHRITISMEGGIE

#ChronicTruths #LifeWithArthritis #MySeveralWorlds
HERE'S WHAT LIVING WITH CHRONIC ILLNESS HAS TAUGHT ME You can't always predict your limits. Some days you'll crash after a five-minute walk, other days you'll do more than you thought possible. Guilt is inevitable, but it doesn't have to control you. Canceling plans doesn't make you unreliable- it makes you human. People will misunderstand or judge. That's on them, not you. Learning who deserves your explanation and who doesn't is key. Rest isn't a luxury or a punishment. It's a necessary part of the care plan. No one's advice or opinion is more important than your own experience with your body. Trust it. Credit @ARTHRITISMEGGIE #ChronicIllness #ChronicTruths #LifeWithArthritis #MySeveralWorlds #FibroNerds #ASWarrior #PsoriaticArthritis
November 12, 2025 at 4:36 AM
carriekellenberger.bsky.social
"Chronic noise exposure...may do more than harm your hearing.
New research linked repeated loud sound to dopamine neuron death and movement issues in mice, offering insight into how environmental noise could contribute to #ParkinsonsDisease."
🔗
bit.ly/3Xhya5f
Chronic Noise Exposure Led to Parkinson's Disease Symptoms in Mice
Noise as loud as 85 to 100 decibels over time led to irreversible motor defects and loss of dopamine neurons in a mouse model of pre-symptomatic Parkinson’s disease.
bit.ly
November 11, 2025 at 5:26 AM
carriekellenberger.bsky.social
Many thanks to Melissa at @teamfibro (Fibromyalgia National Health Organization) for featuring my journey with #fibromyalgia. Read it:
🔗
supportfibromyalgia.org/fibromyalgia...

❓What is the most important piece of advice you would give to someone newly diagnosed with Fibromyalgia?
November 11, 2025 at 5:22 AM
carriekellenberger.bsky.social
"I presumed I was fine since I did not experience pain, & continued to eat, drink & play sports as usual until I developed multiple #DVTs & a #PulmonaryEmbolism that nearly cost me my life. It also activated #AutoimmuneDiseases."
🔗
www.achronicvoice.com/antiphosphol...

#APS @achronicvoice.com
Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient
The ultimate Antiphospholipid Syndrome diagnosis resource guide from A to Z. Written by an APS patient with over 20 years of lived experiences.
www.achronicvoice.com
November 11, 2025 at 5:15 AM
carriekellenberger.bsky.social
"Me trying to swallow all the new
info that my doctor just gave me."

Credit: MySeveralWorlds.com

#MySeveralWorlds #ChronicIllnessConfessions #ChronicMemes #ChronicHumor
"Me trying to swallow all the new info that my doctor just gave me." Credit: MySeveralWorlds.com #MySeveralWorlds #ChronicIllnessConfessions #ChronicMemes #ChronicHumor Image of a chipmunk stuffing a nut into his mouth.
November 11, 2025 at 3:55 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
drdoylesays.bsky.social
Continuing to engage w/ someone who is toxic to us, even if we're right, even if no one else is challenging them, at the expense of our safety & stability is a trap.

There is NO argument or interaction, especially on the internet, worth sacrificing our safety & stability over.
November 11, 2025 at 1:47 AM
carriekellenberger.bsky.social
"Normal platitudes, which can mostly be summed up as "This too shall pass", don't apply when you have a treatment-resistant, severely disabling disease that will last your entire life."
Credit @alexandrite113
#DisablingDisease #LifeWithDisability
#ProgressiveIllness #DisabledLife #MySeveralWorlds
"Normal platitudes, which can mostly be summed up as "This too shall pass", don't apply when you have a treatment-resistant, severely disabling disease that will last your entire life." Credit @alexandrite113 #DisablingDisease #LifeWithDisability #ProgressiveIllness #DisabledLife #MySeveralWorlds
November 10, 2025 at 3:39 AM
carriekellenberger.bsky.social
"People talk about budgeting for rent, groceries, travel. #ChronicIllness budgeting looks like: meds, doctor copays, emergency appointments, delivery food on flare days, heating pads, supplements, backup plans. All of it just to function."

Credit @chronic.resources
#ChronicTruths #MySeveralWorlds
"People talk about budgeting for rent, groceries, travel. #ChronicIllness budgeting looks like: meds, doctor copays, emergency appointments, delivery food on flare days, heating pads, supplements, backup plans. All of it just to function." Credit @chronic.resources #ChronicTruths #MySeveralWorlds #ChronicPainWarrior #ChronicLife
November 9, 2025 at 3:39 AM
carriekellenberger.bsky.social
How to measure pain in a culture sensitive way is an vital first step in research. Most pain measurements were developed in Western cultures. (McGill Pain Questionnaire) Most words were suitable for Chinese populations but some were difficult to translate.
🔗
buff.ly/JmNNvE7
buff.ly
November 8, 2025 at 5:15 PM
carriekellenberger.bsky.social
What people think PTSD is

👉 Not being able to move on after a traumatic event

❗What #PTSD actually is
MANY THINGS YOU NEVER REALIZE until you start addressing it.

Credit: @what.is.mental.illness

#MySeveralWorlds #MentalHealthMatters
What people think PTSD is 👉Not being able to move on after a traumatic event ❗What #PTSD actually is ✔️ Unwanted memories ✔️ Anxiety/depression ✔️ Negative self-image ✔️ Excessive blame ✔️ Hypervigilance ✔️ Dissociation ✔️ Emotional distress ✔️ Easily scared ✔️ Sense of threat ✔️ Intrusive thoughts ✔️ Avoidance/isolation ✔️ Memory problems ✔️ Anger, guilt & shame ✔️ Flashbacks ✔️ Nightmares ✔️ Sleeping problems ✔️ Self-destructive behaviors Credit: @what.is.mental.illness #MySeveralWorlds #MentalHealthMatters
November 8, 2025 at 3:46 AM
carriekellenberger.bsky.social
I don't know how to feel about having disability transportation for the hospital on Mon. I'm all over the place. Mostly anxious! Once I get off in my wheelchair I need to deal with two social workers at the hospital (in a second language), do blood, and see my rheumy. It's a lot.
November 7, 2025 at 1:57 PM
carriekellenberger.bsky.social
"There is a severe shortage of pain specialists with approximately 30,000 Americans in pain for every board certified pain specialist. This shortage is caused by a difficult path to specializing in pain treatment plus negative public scrutiny."
🔗
www.practicalpainmanagement.com/resources/et...
Can I Call Myself a “Pain Specialist?”
Who defines the role of pain specialists? Inside the legal requirements for practitioners.
www.practicalpainmanagement.com
November 7, 2025 at 4:56 AM
carriekellenberger.bsky.social
When you've experienced all of it and people don't understand how much it effed you up...

SOME POSSIBLE CAUSES OF MEDICAL TRAUMA...

Credit to the amazing
@chronicloveclub.bsky.social ❤️

#MedicalGaslighing #MedicalTrauma #CPTSD #PTSD
When you've experienced all of it and people don't understand how much it effed you up... SOME POSSIBLE CAUSES OF MEDICAL TRAUMA... ✔️ Near death experiences ✔️ Distressing hospitalizations ✔️ Repeated mistreatment by medical professionals ✔️ Receiving a life-changing diagnosis ✔️ Aggressive treatments ✔️ Having your symptoms repeatedly ignored or dismissed ✔️ Repeated invasive procedures ✔️ Unexpected complications ✔️ Being discriminated against due to your age, ethnicity, or appearance ✔️ Being gaslit or misdiagnosed ✔️ Being intubated ✔️ Major surgeries and ICU stays ✔️ Prolonged illness ✔️Emergency medical interventions #MedicalGaslighing #MedicalTrauma #CPTSD #PTSD
November 7, 2025 at 3:40 AM