CHRONIC ILLNESS

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Carrie Kellenberger Fibromyalgia

Living Abroad with a Chronic Illness – Resource Page (Updated June 2020)

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 about life with chronic illness.

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 millions of other chronically ill expats and travelers over 11 years of posting here. My Several Worlds has been listed as a Best Blog for Fibromyalgia in 2018, 2019, and 2020.

My Several Worlds Best of Fibromyalgia Blogs 2020 with Healthline

 

My Several Worlds – Chronic Illness Mission Statement Life with Chronic Illness - Carrie Kellenberger, My Several Worlds

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 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. It’s impossible 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 45 now and mostly housebound.

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 20s.

When I was 27, I moved to Asia. The aches and pains continued to come and go in China in 2003 and then when I moved to Taiwan in 2006.

In China, I had days when I couldn’t lift my left arm. On some days, I’d lose strength in my arms and legs and it often felt like I’d dislocated something. (I know what this feels like having dislocated both shoulders and one knee.)

During my time in China and Taiwan, my pain was bad enough that I sought assistance with non-traditional methods of pain relief, including reiki, massage, acupuncture, Traditional Chinese Medicinecupping, acupressure, bloodletting, and scraping. None of it helped, although I had some success with reiki and I believe this is because of the person who helped me. I also had success with acupressure and again, because of the person delivering the treatment. I’ve written about these experiences and linked to them.

My experience with cupping, a Traditional Chinese Medicine technique used to clear toxins in your body.

Starting in 2007 in Taiwan, I was in and out of the hospital all the time. No one had answers for me.

A few weeks before my wedding in 2008, I had a week-long flare. I couldn’t put any weight on my left foot. It felt like shards of glass were embedded in my foot. Thankfully, our wedding day was perfect and I felt good that day.

Two months later, we were back in the hospital in Taiwan. This time both my knees swelled up and filled with fluid. I couldn’t stand or walk. My legs felt like they were going to snap in half.

At this point, doctors agreed that something was very wrong. And that’s where my journey began with life abroad as a chronically ill expat.

Since getting sick, one question I’m asked constantly is, ‘Why don’t you go home?

My response is simple. Taiwan IS my home. We became permanent residents of Taiwan in 2012. We own a business here and hire locally. I have access to healthcare here and can see a specialist within a week.

Additionally, I have lived in Asia for 17 years. My Ontario health insurance expired before I got my diagnosis.

Research and confirming with other chronically ill friends in Canada has revealed that it will take three months to reinstate my health insurance. Then I have to find a general practitioner, a difficult thing to do in Canada. Then wait for that practitioner to refer me to a specialist. The average waiting time to see a specialist in Canada is two years.

Considering that I’m in the hospital or ER at least twice a month, Canada is not an option. I have no words for the US.

So that’s the short version of my story, and I’ve compiled the rest in helpful links in this directory to navigate the past 12 years of being chronically ill in Asia.


So that’s the short version of my story. I’ve compiled the rest in helpful links in this directory to navigate the past 12 years of being chronically ill in Asia.

 

How I Manage My Chronic Pain

Chronic Pain Awareness Month

Let’s Talk about Pain – Chronic Pain Awareness Month

Ten Years After Ankylosing Spondylitis Diagnosis

10 Years with Ankylosing Spondylitis (2009 t0 2019)

Simplifying Life with Chronic Illness

Letting Go With Chronic Illness Doesn’t Mean Giving Up

– Simplifying Life wit Chronic Illness

This article offers information on how to keep track of your energy output and how you can work on pacing to keep your pain levels manageable.

 Pacing for Pain Management

Life limitations with fibromyalgia and MECFS

Living Within The Limitations of Fibromyalgia

Art For Arthritis and Art for Chronic Illness

Art Therapy for Chronic Pain and Chronic Illness 


 Finding Health and Wellness in Taiwan

Health Directory for Taiwan - My Several Worlds

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

Glowsticks


Alternative Treatments in Taipei

A series of blog posts Gua Sha - Scrapingabout 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 in China in 2003. I gave up on TCM completely in 2014 after throwing up for eight months straight on herbal teas and powdered TCM. Guess what happened next? All that throwing up ramped up my stomach issues.

2016Acupressure – Jin Shin Jyutsu

Alternative Treatments to Chronic Illness: Do They Work?

This article was written in response to yet another woman reaching out to tell me a certain diet would cure me. I have no time for people who make health suggestions to me when they can’t even pronounce what I have. Yes, I’m frustrated in this article and you can tell from the tone. My short answer to alternatives for the ones I’ve tried is that they don’t work and should be used in conjunction with Western medicine, but this might help readers understand how much I’ve tried before giving up. I do believe that some of these alternatives harmed my health.

Everyone is different! What works for you might not work for me. I am understanding of this, but I am not understanding or patient with people who tell me to try another fad diet or supplement.

 

Here are some of my favorite chronic illness bloggers. These folks are people who have helped me and been generous with their time throughout the years.

Patients supporting patients!

A Chronic VoiceArticulating lifelong illness through various perspectives – Sheryl is very well known in the chronic illness community and she is the biggest online cheerleader I know. Not only is she super helpful on her own site, covering a wide array of topics, but she is generous with her time online by taking the time to answer questions. She also features other bloggers regularly and creates special meet-ups online for everyone to participate in. She is also the ONLY chronic illness blogger I’ve met in Asia, so I hold a special place in my heart for this remarkable woman.

Thriving While Disabled – Mindset management and practical advice on managing your medical care and navigating the US social welfare system.

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

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

How To Use Your Pain

 

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12 thoughts on “CHRONIC ILLNESS

    Claire

    (June 29, 2020 - 8:55 pm)

    It must be so challenging to navigate a healthcare system in another country Carrie. I think you have done so amazingly well given how stressful it must be.

      Carrie Kellenberger

      (July 31, 2020 - 3:49 pm)

      It’s very challenging, but it has also pushed me with my Chinese. The only time I can’t use Chinese is if I’ve got a migraine. I’m not even capable of speaking if that’s happening. My husband is a good advocate. He doesn’t speak Chinese but my medical team knows me well and he knows everything, so he’ll push if I can’t.

    Alison Hayes

    (June 29, 2020 - 9:04 pm)

    Carrie – thank you so much for sharing!
    Chronic conditions aren’t easy and it sounds like you’ve been pretty thorough in your explorations. I am 100% with you on the impatience in terms of expectations from others with suggestions. You are the expert in your body, and nobody else(doctors included) have the right to tell you what you NEED to do next(doctors working with you as a teammate is utterly appropriate). Sounds like you have found your balance and know what to do for yourself, which is excellent – I hope that you continue to find ways to live your best life while managing your condition!

      Carrie Kellenberger

      (July 31, 2020 - 3:48 pm)

      Thank you, Alison! I always love hearing from you, by the way. I think my doc has decided I’m a bit of a bully. I’m the patient that he doesn’t like to see coming, but he has also freely admitted he doesn’t have another patient like me and he’s impressed with the research I bring in. At least he listens and does what I ask him to do. I’ve found a great doc for this stage of my life for sure.

    Shruti Chopra

    (June 30, 2020 - 1:05 am)

    Hi Carrie… this may sound strange but it was helpful to read about your journey. I felt I could relate to you despite things being different for me. I have had many people ask me why would I not go back to London as my healthcare would mainly be free – but the waiting lists, the inflated costs of medicines and supplements are a huge put off. But most importantly, in Mumbai, I can go see any doctor I wish to without having to go through a chain of referrals. And hospitals here provide me with the best of facilities but we somehow have created a notion that Asian countries may not be as good in healthcare as the west is. But I really do disagree.

    But coming back to reading about your journey – I do like how you’ve listed your treatments which I look forward to reading more about and educating myself on them. I’ve heard a lot about cupping but never experienced it so that’ll probably be my first go-to!

    Thank you for all this information and being so open.

      Carrie Kellenberger

      (July 31, 2020 - 3:47 pm)

      Hi Shruti,

      I’m so late replying to my comments. My computer has died a long, painful death this summer and I’ve just bought a new one. What a difference! I can see comments again! LOL. Perhaps you, more than anyone, gets my reasoning for this decision. I’m the same. It didn’t make sense to go back for the exact same reasons. I think healthcare in Asia is superior to healthcare in North America – certainly it is better than the US. Taiwan’s Universal Healthcare System ensures that everyone has access to health care and dental care. The US and Canada could learn a lot from our system here. I look forward to your cupping experience! It wasn’t for me! 🙂

    Klyn Elsbury

    (June 30, 2020 - 2:06 am)

    Absolutely love how courageous you are in sharing you story and journey

    Sheryl

    (June 30, 2020 - 4:35 pm)

    I love this resource page and short sharing, Carrie. Yes Taiwan is indeed your home 🙂 I love that there’s another spoonie who ‘clicks’ that isn’t too far away from where I am! 😀

      Carrie Kellenberger

      (July 31, 2020 - 3:44 pm)

      Me too! I can’t think of any other Spoonies in Asia! I’m sure you know better than I do. You’re certainly my favorite by far, Sheryl!

    Katie Clark

    (July 1, 2020 - 9:46 pm)

    That must have been so scary to have just been diagnosed with a serious chronic illness and not having insurance! From what I’ve read in your other posts, it seems like you’ve had very good care. Do you have insurance through your family business or is Taiwan different in how they cover medical costs?

      Carrie Kellenberger

      (July 2, 2020 - 3:24 pm)

      Taiwan’s health care system is one of the best in the world. We have a universal health care system. Employers cover 75% and you pay the other 25%. The amount you pay is based on the amount you earn here. 96% of the population is covered and this it’s all synced, so you get automatic access to see doctors and specialists all over the island. You don’t need to wait for referrals. If you know you need to see a cardiologist, for example, you can book right in with one online and you might wait a week at the most for your appointment. Your entrance fee to a doctor is approximately $5US the day of your appointment and that includes your prescription meds that are covered under Taiwan’s NIH program. This also covers dentist visits, so you can go twice per year and pay $5 and get your teeth cleaned and checked.

      When I’ve had to get MRIs, I spend around $25 per test. That’s extra. When my mother in law came to visit and she thought she broke her wrist, we took her to ER and they treated and bandaged her up to the tune of $20US with no insurance.

      The care I get here is excellent. The problem I’ve run into is that the new line of meds for AS (anti TNF blockers) are not covered under health insurance unless you meet government criteria. You must have the genetic marker. I don’t have the genetic marker, but research in the past five years shows that a great number of AS patients don’t have the genetic marker, so this is where the system is flawed. I’ve been through all the AS meds that are offered through the NIH here. They are no longer effective for me, which is why the disease progressed and I landed in a wheelchair. So now I’m paying out of pocket for Enbrel, which is approximately $1,200US a month for my injections. This med has kept me out of my wheelchair. I’m managing fibro and MECFS on my own since standard meds don’t seem to be effective. In the past decade, we’ve learned I’m allergic to a lot of meds. I’m also allergic to Enbrel, but the side effects (skin rashes and headaches) aren’t as bad as the side effects I was getting on other meds. We just do our best to make it work. It’s good to know I can get in to see a specialist at any time and there are virtually no wait times for procedures. Even blood work is processed within an hour of taking it. My results are delivered during my appointments or I can view my results on my phone through the Taiwan Health app.

    Klyn Elsbury

    (July 2, 2020 - 3:13 am)

    This made me tear up multiple times. I admire your strength and fortitude to persevere on the days it felt like nobody was listening to you. So beautiful and it inspires me in more ways than one.

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