My Several Worlds - Stories of Disability, Illness & Belonging

My Several Worlds - Stories of Disability, Illness & Belonging MySeveralWorlds.com has supported people living with chronic illness, chronic pain, & disability since 2007. Created by Carrie Marshall Ask questions.

MSW supports people living with Spondyloarthritis, fibromyalgia, MECFS, APS, and other autoimmune issues. My Several Worlds - Chronic Pain and Disability Awareness by Carrie Kellenberger

➡️ I write so you can better understand life with disability related to Chronic Pain, Fibromyalgia, Arthritis, Spondylitis, MECFS, and more.
➡️ Former world traveler
➡️ Veteran patient advocate

Hello, beautiful

warriors and friends! My name is Carrie and I'm a chronically ill Canadian in Asia. I've lived here since 2003 and I've called Taiwan 'home' since early 2006. I've suffered from chronic pain for over two decades. I'm 49 years old and disabled. I've been using a wheelchair and cane to get around since 2009. At 34 years of age, after suffering from really odd joint problems and pain for many years, I was diagnosed with Ankylosing Spondylitis in February 2009. Now more commonly referred to as Axial Spondyloarthritis, my inflammatory arthritis attacks my joints and everything else in my body. My central nervous system is a mess. I suffer from several kinds of arthritis: axSpA, PsA and OA. Additional diagnoses: fibromyaglia, ME, APS, chronic primary insomnia since age 24, multiple chemical sensitivity syndrome, MCAS, migraine, skin rashes, mouth ulcers, otitis media, depression, anxiety, and more. I'm touching the tip of the iceberg here to give you an idea of my messy and uncool body! I grew up in a small town called Carleton Place in Ontario, Canada. I got a law and anthropology degree, then got my ESL teaching certificate, and moved to Asia. At that time, I had pain, but was able to convince myself it was from running and working out. Many patients normalize their pain and strange symptoms because they think everyone feels that way. When you're a sick teen, you're often not believed as well and that is what happened to me. Like most of you, I woke up one morning and things weren't working right. I couldn't put weight on my left foot; my right shoulder was frozen, I felt like I had the flu all the time; I had extreme muscle weakness and my back was on fire. The fatigue was crushing me, and my joints were not happy. It wasn't uncommon for me to wake up with knees the size of bowling balls. Once it affected my ability to stand, we had to seek medical attention and voila - 'You have AS, Carrie!' My first thought was, 'Thank goodness it's not Rheumatoid Arthritis!' I had no idea that Spondyloarthritis is just as bad as RA if not worse. It has completely derailed my life. In 2014, after having more health problems crop up, I received fibromyalgia and MECFS diagnoses. I'm told autoimmune diseases LOVE to party together. It turns out I am also a chronic EBV patient and all of it stems from recurring mono infections. I've also been treated for CRPS and myofascial pain syndrome. I started blogging about our life abroad in early 2007. What you see here on MSW is more than two decades of research and writing. This page supports chronically ill and disabled patients who are looking for research and citations. Make new friends. Welcome to My Several Worlds. Chronically yours,
Carrie

PS: I'm not a medical professional and none of the information I provide on my website or on this page should be taken as professional advice. Please consult your doctor on health matters and medical care. PROFESSIONAL BIO:

Created in January 2007, My Several Worlds is a health website for chronically ill patients in Asia and around the world. I write so you can better understand life with disability related to Chronic Pain, Fibromyalgia, Arthritis, Spondylitis, MECFS, and more.

*MSW provides much needed health resources and information in English.
*2022 Support Fibromyalgia Legacy Winner
*Best Blog for Fibromyalgia with Healthline in 2018, 2019, and 2020
*Finalist for WEGO Health Awards 2020 for Lifetime Achievement Award in health advocacy
*I work with several non profit organizations to help disperse up to date information and research to patients all over the world
*930+ articles on this site covering a range of health topics and travel options in Asia for readers to enjoy.
*I'm an experienced public speaker and content creator for health topics.
*If you're interested in hiring me, please feel free to get in touch. I'd love to hear from you!

"The book of autoimmune disease symptoms and related conditions."Credit: Bored Panda ❓Guess what I am searching through ...
09/10/2026

"The book of autoimmune disease symptoms and related conditions."

Credit: Bored Panda

❓Guess what I am searching through for tomorrow's appointment with the vascular specialist?

My Fibromyalgia Flare Survival Kit was written in 2016 and I update it each year to include new products that I've found...
09/10/2026

My Fibromyalgia Flare Survival Kit was written in 2016 and I update it each year to include new products that I've found in Asia that help me cope with chronic pain.

Do you see anything on my list that helps you? What's your favorite pain product for fibromyalgia?
🔗
Read it at: https://www.myseveralworlds.com/2016/08/25/my-flare-survival-kit-2/


"Everything can have beauty, even the worst horror." ~Frida KahloThis image seems apt for what I've been through, especi...
09/09/2026

"Everything can have beauty, even the worst horror." ~Frida Kahlo

This image seems apt for what I've been through, especially for .

Did You Know?"There is a severe shortage of pain specialists with approximately 30,000 Americans in pain for every board...
09/09/2026

Did You Know?

"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."

Credit: MySeveral Worlds.com

Fibromyalgia in Taiwan - A Patient Guide For Life With Fibro in Taiwan"If you’ve landed on this page, you’re likely here...
09/09/2026

Fibromyalgia in Taiwan - A Patient Guide For Life With Fibro in Taiwan

"If you’ve landed on this page, you’re likely here in Taiwan and have just realized that there is the disturbing lack of information about fibromyalgia in Taiwan. You’ve likely searched online and realized there is nothing current to read about fibromyalgia too. Or perhaps you’ve realized some sources are in Chinese but the information is wildly out of date.

It makes for dismal reading and I know first-hand how isolating it can feel.

I’m glad you’ve landed here, where I can assure you that:

a) you are NOT alone. There are plenty of patients with fibromyalgia in Taiwan who are looking for information in English, and

b) this page includes up to date information and I’m adding to it monthly. I hope it helps.

This page has been created as a resource page for fibromyalgia patients in Taiwan who are looking for further information and assistance."
🔗
https://www.myseveralworlds.com/2021/01/25/fibromyalgia-in-taiwan-what-you-need-to-know/

You know I always have crazy tales during so here is 2026's September pain adventure. 💀My simple wisdom tooth extracti...
09/08/2026

You know I always have crazy tales during so here is 2026's September pain adventure. 💀

My simple wisdom tooth extraction last Friday at 1pm turned into one of the most frightening medical emergencies I've ever experienced.

The extractions themselves were textbook. Then I started bleeding and it didn't stop.

I spent hours forming enormous grape sized liver (aka currant jelly clots) inside my mouth.

At 9:10pm, I called my dentist and got an automated message. I hung up and continued packing my mouth and biting down hard. The clots kept coming. Then I called 811 for advice and waited 40 minutes for a call back. By that time I had already woken my parents up and asked someone to take me to ER. None of us realized that I should have called an ambulance.

I ended up at Carleton Place ER at 3am when the bleeding became completely uncontrollable.
Then things turned into something out of a horror movie.

I continued hemorrhaging for five hours ALONE. No one took my vitals. My heart rate was around 148 for much of the ordeal. I went through bag after bag catching blood and giant clots. At one point, with no bag available, I was bleeding into two hospital garbage cans. I easily threw over 100 clots.

When the ER doctor arrived around 8 or 9 pm, she realized I had been misclassified. I believe this happened because of two things. The intake nurse refused to look at my clots and decided to look up APS online even thought I was hemorrhaging in front of her and despite what I told her I had. I also refused an automatic blood pressure cuff because of my APS and because I was hemorrhaging. I have written about this topic before. I did not refuse a blood pressure test. I asked for a reasonable accommodation in the form of a manual cuff which she refused to get. I told them exactly where to find their manual cuff in their hospital.

Several attempts were made to stop the bleeding, including two massive rounds of TXA delivered through a mask, and eventually something was packed into the extraction site that finally helped.

My doctor openly admitted she was outside her expertise and started calling specialists. I actually respect the hell out of her for recognizing what she didn't know.

I was eventually transferred by ambulance to Ottawa General, where the adventure continued. I was severely dehydrated, left sitting in a hallway with pitting edema in my legs getting worse, I was denied a stool and a bed. I asked for IV fluids because I knew I had lost a lot of blood. I also asked for any kind of pain med they could give me. I did not reveal my fibromyalgia diagnosis because I thought it was not relevant to the situation and I wanted them to focus on the APS and my extremely difficult to treat axial spondyloarthritis. They gave me an IV and then immediately forced me out of the bed and made me walk to the nurses station. By that time I was so out of it I had no idea what was going on. And obviously I had two major problems. I can't walk far at the best of times, I was walking after a round of pain meds from CP hospital and the ambulance. I was a fall risk. The nurse that walked me there walked 6 feet in front of me and was not there had I fallen. I did it hunched over my cane.

At the nursing station they gave me a chair that was broken. I knew I needed a stool of some sort to get my legs up and asked for one. The nurse got snippy at me and said I needed to wait my turn. I did not listen to her and grabbed a stool and got my legs up.

I was in the nursing station for approximately 5 hours because the hospital lost my bloodwork. My pain meds never arrived.

When the nurse came to do a blood pressure reading she had an automatic cuff. Once again I explained my exceptionally reasonable request for a manual blood pressure cuff and she replied "they are the same." I said, "Trust me, they are NOT the same to pain patients and patients who have APS. Please find the manual cuff."

She found it and came back and, in my opinion, used unnecessary force to do my blood pressure reading. My reading was high.

After I demanded to know what was taking so long, I learned they had lost my blood, I had to give blood again. My treating doctor told me she'd return in an hour and never came back. The nursing station didn't know where she was.
Then they forgot my pain meds.

As they were giving me my pain meds, my nurse decided to lecture me on being impatient and they were all doing their best. I was NOT impatient or rude. She interpreted me asking for reasonable accommodations because I am disabled as rude.

So I sat through that lecture and kept my mouth shut.

Because she didn't give me the pain meds in the format that I needed, I ended up barfing in my mouth in the nursing room. There were no trash receptacles so I ended up swallowing it.

I finally made it home 24 hours after leaving, promptly vomited three times, and have spent the last few days trying to recover.

The kicker? My dentist called me herself on the long weekend just to make sure I was okay. 😭 I see her today to check the extraction sites.

I have and a complicated and complex autoimmune history. I had sought medical advice about my medications BEFORE my extractions and followed the instructions I was given.

Something went very, very wrong with my body.

My overall impressions of are negative across the board. I asked for a hematologist on January 27th with this exact scenario as a nightmare in mind. I'm still waiting for a hematologist. And now it's clear that nobody on my team knows what my clotting disease is.

For now, I'm alive, home, and resting.

The entire scenario involved a dental extraction, 24 hours in two hospital ER's, and an ambulance transfer. I got the best treatment from my paramedics.

I'm exhausted, hurting everywhere, and pretty traumatized. I'm also requesting my complete records from both hospitals because there are some serious questions that need answers.

There will eventually be a much longer piece about this experience and what it taught me about navigating emergency medicine as a complex chronic illness patient in Canada.

Chronically yours,
Carrie

I announced my retirement from travel writing 11 years ago... After my diagnosis in 2009, I stopped writing for close to...
09/08/2026

I announced my retirement from travel writing 11 years ago...

After my diagnosis in 2009, I stopped writing for close to four years. I was just trying to survive! Illness can silence voices so quickly. I gave up all my hopes and dreams.

Finding joy in the aftermath of chronic illness has been my biggest life challenge. I am fighting for my health and for awareness every day. I can’t change what is happening to me or how others react to me. But I can change how I look at myself. I can find joy in what I have in my life.

I have found joy on the pages of this website and in my art studio where I've launched new creative endeavors that are giving me a renewed outlook on life!

Continue reading to learn where MSW is taking you with words and art this year
🔗
https://buff.ly/3DSgO58

8 Bloggers You Should Follow 2021🔗https://buff.ly/3iSX2No Featuring Melissa Fibromyalgia National Health Organizatio...
09/07/2026

8 Bloggers You Should Follow 2021
🔗
https://buff.ly/3iSX2No

Featuring
Melissa Fibromyalgia National Health Organization
Cynthia Cynthia Covert, The Disabled Diva
Cathy Cathy Chester - An Empowered Spirit
Caz Invisibly Me
Barby Barby Ingle
Shelley Chronic Mom

Kathy Upbeat Living

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