Chatting with Carrie (an intimate interview with Fibro blogger, Carrie Kellenberger)
Hello my purple butterflies!
Today I have a real treat for you. Meet my friend and fellow purple butterfly, Carrie Kellenberger. Carrie, first off, I want to thank you for taking time out from your schedule to speak with us. My followers may not know this but, you have been a health advocate and author at My Several Worlds - Advocating for Chronic Illness Awareness in Asia since 2009. You’ve worked at the Canadian Chamber of Commerce in Taiwan. In addition to this, you work at the Spondylitis Association of America.
Carrie: Hi Rachel. Thanks so much for having me with you today. What better way to start the new year than with an interview with one of my favorite people and fibro bloggers? It’s a pleasure to be here!
Rachel: You have such an interesting life! You are originally from Carleton Place, Ontario. You’ve lived in Changchun, Jilin Province, China, and you currently live in Taipei, Taiwan. Why did you make the move? I am sure while having a chronic illness, those moves were not easy. Can you share with us how you handled those moves? Tell us a bit about your experiences while making such a culture change.
Carrie: So this is a huge question that gets asked a lot and I’ll try to keep it short and simple. I was 27 when I decided to move to China from Canada. At that time, I was working in a DIY art shop in downtown Ottawa and I wanted to see the world before settling down. Back in 2003, I was meeting more and more people who had spent a year abroad teaching English and it sounded fun.
As an avid bookworm with many penpals around the world and a degree in Anthropology and Law, I have a strong interest in people and other cultures. I was fascinated by Asian cultures specifically and figured teaching abroad for a year would give me a great way to immerse myself in a new culture and learn more about myself. I wanted to spend a year abroad in Japan or China and then do some backpacking around Asia before coming home. I didn’t start that trip out thinking I’d be immigrating to Taiwan!
At age 27, I had health problems, but I was also in good shape and my health was in a good place so I figured I’d go for it. I didn’t give any thought to getting sick abroad. I have since learned through years of life experience that we can be pretty silly with our decisions in our 20s. I don’t even think I had extra health insurance back then!
Thankfully, my first year in China was great. My health problems become more apparent during my second year in China and I had massive problems with my back and left shoulder. Now I’m aware that it was arthritis and fibromyalgia.
But back then, I was working out a lot. I still thought everyone felt that way after working out. I ended up trying acupuncture in China (it didn’t work) and various other Asian alternative treatments to get some relief. None of it worked. Eventually, it worked itself out. By then I was singing full time on stages across China so I just filed it away as an experience and kept on going with my life.
I met my husband during my second year in China. He’s from Iowa. We loved life in Asia, but we didn’t want to stay in China, so we fixed our sights on a year in Taiwan so I could continue my Chinese studies. Subtropical island life was a big draw for us! We left China, backpacked around Asia for three months and then moved to Taiwan with our backpacks containing all our worldly belongings and started life in Taiwan.
Again, we never thought we were staying. But one year turned into two years. We loved living in Taiwan. We paid off our loans here and then somehow three years had gone by in Taiwan and that brings us to 2009 when my health started acting up.
The aches and pains I’d had from my teenage years and in my 20s were still there, but they were getting much worse. One day in early 2009, I woke up with severe back pain and grotesquely swollen knees. I was in an enormous amount of pain. We had to seek medical attention for that. It turns out that I had Axial Spondyloarthritis, which your readers might know as Ankylosing Spondylitis. You can read My Ankylosing Spondylitis Story here if you wish.
I remember my mom saying, ‘Thank god it’s not RA!’ But we had no idea AS was just as bad or what was coming. So we continued with our lives. I was on a cane and in a wheelchair for most of 2009 and after that, flares would come and go, but no one ever explained to me how serious axSpA is. It never crossed our minds to move home.
In 2012, we became business owners here in Taiwan. I run a company called Reach To Teach Recruiting and we help English teachers move abroad to teach English.
My arthritis was under control by that point. and I had no idea that it was even possible to come out of remission with inflammatory arthritis until 2014 when I started experiencing more pain. That was the year I came out of remission for the first time. I also got my fibromyalgia and MECFS diagnosis that year.
It was a terrible year and by then we were stuck here because we had a business to run. The strange thing is that now I realize how much I was doing. I was a new business owner and we were trying to build our business WHILE I was becoming slowly disabled. My staff did not recognize how serious it was. I don’t think they even clued into the fact that I was a new business owner that should’ve been enjoying building my business instead of being crippled while trying to build it. It was a rough time.
Rachel: How often do you see your family? Do you foresee moving back to Canada in the future?
Carrie: I haven’t seen my family since August 2019 and had planned to go home the summer of 2022, but I had a huge arthritis flare-up. It was my fourth time out of remission, and I was not well enough to fly. I’ve had to bump my trip to June 2023. It has been exceptionally hard being cut off from family and Canada during the pandemic. Not to mention the fact that flying is difficult when you are chronically ill, especially with fibromyalgia and arthritis. So I’m looking forward, obviously, to giving my mom and dad lots of hugs this year. But I’m not looking forward to the 30+ hour journey home!
As for moving back to Canada, I hate saying it but living in Canada or anywhere in North America doesn’t interest me. We really love our lives here. There’s no drama, no political unrest, living is cheap and easy, and we love it here. Plus I have access to instant healthcare here whereas in Canada, I’d have to wait three months for my OHIP to be reinstated and then find a PCP, which is next to impossible these days, and then wait two years to see a specialist.
My health is grumpy. I can’t wait that long.
Rachel: You have blog on social media and a website My Several Worlds. What got you into writing and blogging?
Carrie: I’ve been a writer all my life. I started with my grandmother who gave me my first journal at age 6. She encouraged me every time I saw her to add new ideas and things to my journals, so I credit her for getting me into the habit. Writers need to write every day, and I’d say I spend at least 1-2 hours minimum doing that.
I’ve got stacks of journals at home from before the Internet even became a thing. In high school I was into poetry and published my first poem at age 13. I was very blessed to have amazing teachers who fostered my writing and kept me going by challenging me to write about different topics.
I kept up with my journals in China, and then in 2007 I heard about Wordpress and decided to move my journals online. My goal in 2007 was to post something every day for a year and I did it! It took 3-4 months to get a solid presence going with MSW and by mid-2007, my site was listed as a best travel blog in the world.
I kept on writing. I got a job at a publishing house and was hired to write textbooks and reading material for readers here in Asia. During that time, I published over a dozen books. But my blogging was also picking up steam and I was starting to get work as a travel writer.
Then I got sick and realized I had spent all this time carving out a travel writing career for myself that I couldn’t continue with. I decided to switch gears and start writing about chronic illness and life abroad as a chronically ill Canadian. I was not expecting people to resonate with that topic at all. It turns out I had a huge audience, and my audience has continued to push me to this day.
Rachel: Tell us a bit about what your role was at the Canadian Chamber of Commerce of Taiwan.
Carrie: I love volunteering and it’s great to be able to give back to our communities. I started out as their Communications Director and was writing all their content. They still use all the marketing packages I wrote for them in 2014.
I was elected to Vice Chair within two years because I had a strong focus on our Canadian small business community in Taiwan. That role led to Chairwoman and I was with them for six years before I had to step down due to health.
Running my own business while managing board meetings once a month; attending government functions as a Canadian ambassador, and keeping things going for our main events such as our Canada Day festival, gala charity events, and Dragons’ Chamber really took a toll on my health.
I loved my time with them, but I was burning the candle at both ends and was way too focused on my work and the Chamber. You know the saying. No one gets it until they get it. And that’s what happened to me. I wish someone had told me to slow down or that more resources had been around back then.
Rachel: How long have you worked for Spondylitis Association of America? Please share with us what you do for them.
Carrie: The SAA was one of the first nonprofits to reach out to me when I started writing about my AS journey in 2009. I got to know their team online and was also working on establishing a nonprofit called Walk AS One at that time. We succeeded and got the nonprofit established and it’s still going today. But I ended up stepping down from that role because 6am board meetings were impossible on top of everything else.
Because I had been heavily involved in Walk AS One while writing my articles about axSpA, it was natural for everyone to stay in touch. The SAA team is amazing and they were the only people who were willing to send me information about what was happening. Their membership fee at $35 is worth every penny although they also provide plenty of free advice as well.
I’m still astonished to this day that they were willing to help me, a Canadian in Taiwan, despite the fact that they’re an American nonprofit. I really can’t speak highly enough about them.
I joined their team officially as a Social Media Ambassador two years ago. I attend conferences for them and bring that information back to the community.
For example, when I attend the American Rheumatology Convergence each year, I’m attending with 14,000 guests, but I attend virtually. There are dozens of topics to learn about, but I watch the presentations that benefit the SpA community and then write about it in an easy-to-understand format.
I release live updates for them across my social platforms and then I take the tweets and content I’ve learned about and create a mega post for MSW that helps my readers. It’s a win-win for everyone.
Rachel: You’re a fellow fibro warrior. When were you diagnosed?
Carrie I got my official fibromyalgia and MECFS diagnoses in early 2014 after I realized that the pain I was experiencing was quite different to my arthritis pain. Now I realize that fibromyalgia was likely there all along. I had mono at age 14 and always had strange pains that I now know to be fibro and arthritis.
It took the perfect storm for fibro to kick into high gear. That storm happened to be me running a business, having my brother pass suddenly in 2012; and trying to keep our business going through grief while keeping up with my other activities.
I somehow caught another round of mono in 2014 and we think that was the trigger for everything else that followed.
I remember working at a Canada Day festival in July 2014. I was there for 12 hours and when I came home, I felt very ill and exhausted. I did the right thing. I rested for two days and then decided to go to my regular weekly Zumba class. I ended up being struck with intense fatigue during that class and had to lie down in the middle of class. I made it out of the class and into the locker room and stayed there for ages. It took an hour for me to get up and walk back home which was literally a five-minute walk. I went to bed after that and I never recovered.
I’ve been very ill since and said goodbye to all exercise after that. Any time I did any form of exercise I’d have a PEM crash, and as it turns out, we think that Zumba class was a PEM crash based on the first PEM crash I had from the festival. I used up all my energy/spoons and didn’t know it wouldn’t come back. Now I know better and I’m careful with activity and my step count. My max is 3,000 steps per day or 30 minutes on my feet. Anything past that makes me sick.
Rachel: What chronic illnesses do you have? Please share how you cope with your diagnosis.
Carrie: I’m disabled and living with Spondyloarthritis (more commonly known as Ankylosing Spondylitis), Psoriatic Arthritis, fibromyalgia, MECFS, IBS, chronic migraine, and chronic tension-headache.
It's impossible to say how I cope. I do many things to help get through each day. I’ve covered everything from meds to alternative therapies, elimination diets, and more on MySeveralWorlds.com
Rachel: What is it like living in Taiwan with a chronic illness?
Carrie: This is a tough one to answer. I’ve touched on it above briefly because people constantly ask me why I didn’t go home when I got sick. But what people don’t realize is that I’ve immigrated here, and I’ve been here for 20 years this month. Taiwan is home.
It has been challenging to navigate a foreign healthcare system in Chinese, but I have quick and easy access to my rheumatologist. The longest I’ve ever had to wait to see him is two weeks. I get good care here.
Taiwan itself is not accessible and public awareness about disability is nil. It’s just not a part of the culture here. While I’ve seen changes with attempts to make things more accessible, it’s a well-known fact that city engineers don’t consult disabled people about accessibility issues which leads to many ‘accessible’ venues not being used at all because they don’t work. Public transpo is not kind to people like me, but Ubers and taxis are cheap. It’s a mixed bag. If you want to learn about living in Taipei with disability and chronic illness, I’ve written more about it here.
Rachel: What are some of your favorite things to do when you are not blogging or writing?
Carrie: Writing is my number one go-to activity as you know, but I’m also an artist with 20 years of teaching art classes behind me. I love art, although I’m nowhere near as gifted as you, Rachel. Have people seen your art interview for My Several Worlds? (Psst… If you’re reading, check out Rachel’s amazing interview and how she creates!)
When I’m not writing, you can usually find me with markers in hand or my nose buried in a book. I can’t draw worth a lick, but I’m gifted at ikebana, which is the Japanese art of flower arranging. This talent was passed down to me from my grandmother who was President of the Ottawa Garden Society and Ikebana Club in Ottawa, Ontario, Canada. My mom is also very talented, and her gardens are extraordinary. I like to think I have picked up their talents.
I have been designing and selling jewelry for over 20 years. My first art job was teaching people how to work with wire and silver, but I’ve also got lots of experience with knotting techniques, macrame, fimo (polymer clay) and more. Nowadays, my hands hurt a lot because of arthritis, so I color every night. I can’t handle coloring pencils because they require pressure for shading, but I love marker art.
I’m a creative person in general and my mom has always said that it’s remarkable how I can take something that looks like trash and turn it into something beautiful.
Rachel: What advice would you share with a newly diagnosed purple butterfly?
Carrie: First of all, you are not alone! It’s 2023 and there is so much more information available to fibromyalgia patients than there was 10 years ago. It’s also encouraging to see that rheumatology convergences are starting to include more information about fibromyalgia to doctors who are starting to take it as the serious disease it is.
My experience might be different to yours, but I’ve found that doctors rarely give life advice for fibro. They issue medications, but the number one tip that fibro patients MUST know is that you MUST change your lifestyle! That includes your diet.
I don’t take medications for fibromyalgia because of med reactions to what’s on the market right now. I manage my fibromyalgia with strict lifestyle changes, which included a strict sleep routine, eating well, implementing and acknowledging limitations, and above all, PACING MYSELF. Less energy means you need to hoard your precious spoons!
Additionally, studies show that the majority of fibromyalgia patients learn from other patients, not their doctors!
Reach out to veteran fibromyalgia patients and join some support groups. I run a group called Fibromyalgia and Ankylosing Spondylitis in Women and that group is very fun and easy going. You don’t need to have a diagnosis or even have both to join. There are loads of veteran fibro patients in this group that can help.
To newly diagnosed patients who are reading this interview or to those of you who suffer from fibro and simply want a friend who gets it, feel free to find me across these platforms:
Instagram (Books and CI): https://www.instagram.com/carriekellenberger/
Instagram for MSW: https://www.instagram.com/myseveralworlds/
Rachel: Carrie, once again I want to thank you for all that you've shared with us today. I had a lot of fun with this interview and I hope you I did too! Purple hearts and butterflies to you!
Carrie: Thanks so much for having me today, Rachel! Purple hearts and butterflies to you, my friend!
That wraps it up for this week guys! Thank you to all of my readers and followers for reading my blog today! To find more of my blogs, just click on the desired social media logo down below. Tell your friends! Tell your friends to tell their friends!
As always, till next time! Be well my friends!
2/10/2023 11:01:48 pm
2/12/2023 08:23:06 pm
Hey Carrie! I had so much fun interviewing you! We’ll have to figure out another project to do together! Thank you for all that you do too! You are such an inspiration to our community and to me. I appreciate you taking time our of your busy schedule to comment on my website. Prayers, love and gentle hugs my sweet friend!
2/11/2023 03:36:52 am
Thanks Rachel for helping the world get to know Carrie, saying that she's amazing is an understatement. Living with Fibro is hard, but, pacing yourself and learning that you are now a different person that needs to adapt what you want to do is great but instead is what your body will allow you to do...
2/12/2023 08:31:08 pm
Hi Marco! Thank you do much for reading and taking the time to comment on my article. It was my pleasure to share Carrie’s talent with everyone. I am so pleased you enjoyed the interview! I know exactly what you mean about living with Fibro. You do become a different person. In many ways I am stronger person because I deal with so much. It is so nice to be able to talk to fellow fibro friends about our condition. We need that connection, Hugs to you!
Leave a Reply.
About the author:
Rachel Barclift, has been suffering from Fibromyalgia for many years. She went to the doctor, never finding any answers for years. She went to one doctor who told her the pain was all in her head. In 2011, she finally found a doctor that believed her! She was officially diagnosed by her rheumatologist and she was so relieved! She writes blogs in hopes to help others find positivity.