CHRONIC ILLNESS

Living Abroad with a Chronic Illness – Resource Page (Updated Oct 2019)

If you have landed on this page, you are probably here because you’ve either read about my travels or life abroad as an expat or you’re interested in learning how I live my life abroad with chronic illness and immense health challenges.

Either way, I’m glad you’re here, and I hope I can answer questions for you if you or someone you know is chronically ill.2018 and 2019 Healthline Choice for Best Fibromyalgia Blog

A chronic illness is a health condition or disease that is long-lasting or persistent. A patient is deemed to have a chronic illness when the condition or disease lasts more than three months.

I’ve been chronically ill ‘officially’ since 2009. I’m a Canadian expat living in Taiwan with Ankylosing Spondylitis, Fibromyalgia, and Myalgic Encephalomyelitis, among other health issues.

I’ve been blogging about my health journey as a Canadian expat in Taiwan for many years. I am an active patient leader and chronic illness advocate and my posts have, thankfully, reached a number of other chronically ill expats and travelers over the years. My Several Worlds has been listed as a Best Blog for Fibromyalgia in 2018 and 2019, and

Living life passionately with limitations from chronic illness takes more than many of us might have to give. My illnesses have shaped my worlds and have inspired me to support other patients. Click To Tweet

What Happened to MeCarrie Kellenberger - Health Advocate for Ankylosing Spondylitis

I’ve been sick for as long as I can remember. I was the kid in school with the never-ending ear and throat infections. If someone had a cold, I always caught it.

Plus I was allergic to everything! Dust, pollen, feathers, grass, nickel, you name it, I reacted to it. I remember endless childhood visits to Dr. White’s office for allergy shots, ear infections, and everything else that came my way.

Believe it or not, the ear infections have never left. I found out at age 38 that my ear infections are related to AS.

Despite having a weak immune system, I earned an athletic A in high school and throughout university. I excelled at sports in high school, and my love for yoga, running, weightlifting and dancing didn’t end until I was 36.

I stopped doing all of those things at age 40 because I was not longer capable of doing them. Today, I can’t lift anything heavier than my cat because of the damage in my spine, and it is very hard to be on my feet for longer than 22 minutes a day.

Giving up my love for athletics is one of my biggest losses from being chronically ill. I knew in 2015 that there would be days I’d have to use a wheelchair, but I never dreamed I’d end up owning my own wheelchair.

I’m 44 now and housebound – officially disabled.Carrie Kellenberger - Living Abroad with Chronic Ilness

My doctors in Canada never took my complaints about pain seriously. They always wrote it off to overexerting myself at the gym. They weren’t concerned about recurring infections and rashes or the back pain I had been experiencing since my early 20s.

The aches and pains continued to come and go when I moved to China in 2003 and then to Taiwan in 2006.

In China, I had days when I couldn’t lift my left arm. I lose all of the strength in my arms and legs now and it feels like my limbs have dislocated. During my time in China and Taiwan, my pain was bad enough that I sought assistance withtraditional Chinese medicine - cupping non-traditional methods of pain relief, including Reiki, massage, acupuncture, Traditional Chinese Medicinecupping, acupressure, bloodletting, and scraping.

I was in and out of the hospital all the time, but no one ever had any answers for me.

A few weeks before my wedding in 2008, I had a flare that lasted about a week. I couldn’t put any weight on my foot because of pain. It felt like walking on glass. I was on full bed rest the week leading up to my wedding. Thankfully, our wedding day was perfect and I felt great that day.

Two months later, we were back in the hospital again in Taiwan, this time with knees that were swollen and filled with fluid. And that is where my journey with living life abroad as a chronically ill expat began. Since getting sick, one question I’m asked constantly is, ‘Why didn’t you go home?

My response to that is simple. Taiwan IS my home. I’m a permanent resident here and have been for years. We own a business here and employ locals. And my Ontario health insurance expired before I got my diagnosis.

It would take three months to reinstate it, then I’d have to find a primary doctor, which is not easy in my hometown, and then after that, wait for my primary doctor to get me on a list to see a specialist, which has a two-year wait time. Considering that I’m in the hospital or ER at least twice a month, Canada was not an option.

We knew the stress and issues with moving would make me sicker, and it didn’t make sense to move home when I have immediate access to Taiwan’s Universal Health Care system.

Click here to read about my chronic illness timeline and how things developed for me with my health from February 2009 to present day.


For further reading, feel free to have a read through some of the articles I’ve posted below as I’ve continued writing about my chronic illness journey.

How To Use Your Pain

How I Manage My Chronic Pain

Let’s Talk about Pain – Chronic Pain Awareness Month

10 Years with Ankylosing Spondylitis (2009 t0 2019)

Letting Go With Chronic Illness Doesn’t Mean Giving Up

 Pacing for Pain Management

Living Within The Limitations of Fibromyalgia

Art Therapy for Chronic Pain and Chronic Illness 


 Finding Health and Wellness in Taiwan

Glowsticks

70 Facts About My Chronic Illness You Might Not Know

Treatment at National Taiwan University Hospital

Healthcare in Taiwan and Patient Safety

Treatment for AS and Fibromyalgia at Taipei Veteran’s Hospital

Traveling and Chronic Illness

Chronic Fatigue Syndrome (ME) – I Am One of the Millions Missing

Surviving the Holidays with Chronic Illness

 


Alternative Treatments in Taipei

These series of blog posts are articles that I’ve wGua Sha - Scrapingritten about the different types of alternative therapies I’ve tried since 2009.

2007 – Cupping

2007 – Scraping

2013 – Treating Ankylosing Spondylitis with Traditional Chinese Medicine

This was not my first time seeking out help from a TCM doctor. I was treated with acupuncture in mainland China for AS complications in 2003. It didn’t work, and I gave up on TCM completely after throwing up for eight months straight on herbal teas.

2016Acupressure – Jin Shin Jyutsu

This article was written in response to yet another woman reaching out to tell me a certain diet would cure me. I’ve tried plenty of diets and all sorts of alternative therapies, and have no time for people who make health suggestions to me when they can’t even pronounce what I have.

Alternative Treatments to Chronic Illness: Do They Work?

The short answer is no, but you should take a moment to read through that article to see how much I tried before giving up. 

Chronic Illness Advocate Sites

A Chronic Voice – A health, wellness and chronic illness blog that aims to articulate lifelong illness from various perspectives, written by Sheryl Chan in Singapore.

Fight Like A Girl – This site was formed for women that are battling cancer and other diseases. It’s a site for survivors and for loved ones to come together and to share stories and experiences, and encouragement.

Spondylitis Association of America – The Spondylitis Association of America (SAA) was founded in 1983 by people affected by spondyloarthritis. Their mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.

I don’t know what I would’ve done after my diagnosis without the kind folks at this organization, some of whom I am now proud to call friends.

Canadian Spondylitis Association – The Canadian Spondylitis Association (CSA) is run entirely by volunteers with Spondyloarthritis. They are a national association that advocates and supports those suffering from Ankylosing Spondylitis, Psoriatic Arthritis, and associated Spondyloarthritis diseases.

National Ankylosing Spondylitis Society – NASS in Great Britain provides support, advice and information to people with AS. They are committed to keeping people as informed as possible about AS.

Faces of Ankylosing Spondylitis – Cookie-Cheryl Hopper is one of our biggest AS advocates and she has done wonders to spread awareness about ‪#‎AnkylosingSpondylitis‬ through her Faces of AS website.

Cookie’s goal is to feature 2,700 faces to show that AS is not a rare disease. She’s almost there. Looking through the faces on her site, it is clear to me that AS is NOT a man’s disease, nor is it a rare disease, although you will still find that many websites have outdated information about AS and list these two points as fact. Most of the faces I’ve seen on her Faces of AS project are women. Cookie’s site demonstrates just how differently AS presents in women, 

If you’d like to read my story on Cookie’s site, go to AS Face number 1649.

Walk AS One – Non Profit – Mission: WalkASOne mobilizes and motivates a global community to raise awareness and address the challenges of everyone affected by Ankylosing Spondylitis and its family of related diseases. I am a founding board director for Walk AS One, but ended up resigning from my position due to health reasons.