Carrie - MySeveralWorlds - Artist, Author, Advocate
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carriekellenberger.bsky.social
Carrie - MySeveralWorlds - Artist, Author, Advocate
@carriekellenberger.bsky.social
✒️ 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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👩‍🦼 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
"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
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
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
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
❓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
November 24, 2025 at 4:05 AM
"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
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
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
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
"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
November 23, 2025 at 4:35 AM
"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
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
"The true heartbreak of living with chronic illness is being forced to relive the worst moments of it over and over again." via
My Brain Lesion and Me
🔗
Read it: www.brainlesionandme.com/reliving-hea...

@serenebutterfly.bsky.social
#Spoonie #ChronicIllness #ChronicPain #Disability #ChronicLife
Reliving Heartbreak: Life With A Chronic Illness –
Living with chronic illness is heartbreaking. Heartbreak that is repeated again and again as its worst moments are replayed over and over.
www.brainlesionandme.com
November 22, 2025 at 10:56 AM
#Inflammation & #BloodClots
"Diseases that cause chronic inflammation can lead to damage to the clotting process which can block blood flow in the veins. Common inflammatory diseases include
Lupus
Cancer
Cystic fibrosis
Asthma
Psoriasis
MS
Diabetes
Infection
IBD"
🔗
thrombosis.org/2024/10/infl...
thrombosis.org
November 22, 2025 at 10:52 AM
Reposted by Carrie - MySeveralWorlds - Artist, Author, Advocate
“If you’ve read My [ #AxialSpondyloarthritis ] Story, u know that bilateral #leg #swelling was my 1st clue. It hit out of the blue. There was no warning. I literally went to bed one night & the next morning, I couldn’t walk or stand.”: buff.ly/2KIbd43

by @Carriekellenberger.bsky.social
#disability
November 21, 2025 at 6:30 PM
Managing #OrthostaticIntolerance

HYDRATION: 3+ liters of water daily
SALT INTAKE: 7-10 grams per day
COMPRESSION: Waist-high garments/ abdominal binders
DIET: Individualized diets based on specific symptoms/food sensitives
SLEEP: Elevate head by 3-6 inches
Via: MERC
#Dysautonomia #POTSAwareness
November 22, 2025 at 3:43 AM
I've been gravely ill for a decade. In 2021, my health hit warp speed & burned down. I lost my ability to work, see friends, and my hobbies. I had hope that IF I can reclaim a bit of my health back, maybe I can still put my life back together. Now I know I can't. #CPP #MySeveralWorlds #ChronicLife
November 21, 2025 at 11:30 AM
28 years with #MECFS.
Mild: no one
believed me.
Moderate: life shrank
quietly.
#SevereME : even sitting up was a loss.
Very severe: I disappeared. Couldn't even whisper.
I've lived through every version of this disease, while not being believed. I carry all of them in my bones."
Credit: @La2Arceri
November 21, 2025 at 3:48 AM
"The bravest thing I ever did was continuing my life
when I wanted to die."
-Juliette Lewis

#MentalHealthMatters #CPTSD #PTSDAwareness #SuicideAwareness #MySeveralWorlds #Depression #YouAreNotAlone #KeepOnGoing
November 20, 2025 at 4:05 PM
The Freedom to Move with #Spondylitis. The last time I wrote for @spondylitis I was testing an exoskeleton. Now I’m cruising in a Robooter X40 chair. It's time to update the #arthritis community on the pros of using a #PowerWheelchair

#MobilityAids
🔗
spondylitis.org/patient-stor...
The Freedom to Move with Spondylitis - Spondylitis Association of America - Ankylosing Spondylitis
Resilience and conviction—being your own advocate—aren’t unique traits, but for those of us navigating health challenges, they’re a way of life. We’re fighters. And that’s something to be proud of, wh...
spondylitis.org
November 20, 2025 at 8:22 AM
“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
buff.ly
November 20, 2025 at 8:21 AM
Sheryl writes about her life w. #ChronicIllness & #disability.

"To provide insight into life with #ChronicIllness is to put your vulnerabilities on public display. It means showing fragments of a broken body, and wounds that will never heal." Read it: buff.ly/3C3SVZ7

Via @achronicvoice.com
buff.ly
November 20, 2025 at 8:20 AM
6 CONFESSIONS OF LIVING WITH A CHRONIC ILLNESS

I always feel guilty.
I always feel like I'm alone.
I'm almost always in pain.
I don't look sick.
Not all doctors understand.
I feel like a failure.

#ChronicIllness #LifeWithIllness #ChronicTruths #MySeveralWorlds #TheChronicLife
November 20, 2025 at 4:53 AM
"The grief of carrying all the years you've been sick on your shoulders."

Credit: @mindfullyevie (The one and only! 💜)

#pwME #MillionsMissing #TheChronicLife #MySeveralWorlds #FibroNerds
November 19, 2025 at 4:14 AM
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
November 18, 2025 at 4:19 AM