Carrie, brown hair pulled back wearing a facemask. Asian flower and swirls in blue and orange. Title Font Teach, Reach, and Advocate, Carrie Kellenberger on Life in Asia with Chronic Illness

Teach, Reach, and Advocate: Carrie Kellenberger on Life in Asia with Chronic Illness

Carrie, brown hair pulled back wearing a facemask. Asian flower and swirls in blue and orange. Title Font Teach, Reach, and Advocate, Carrie Kellenberger on Life in Asia with Chronic Illness

Interview with Carrie Kellenberger on Life in Asia with Chronic Illness

Along this path of the last 3-years, working to figure out my life with Fibromyalgia and other chronic conditions, I’ve met some amazing people. Carrie Kellenberger is one friend who I’ve connected with on many levels. The first level was through our shared experience with Fibromyalgia and chronic illness. I have learned how to live more FULLY through her sharing of her own journey. Although I’m her senior in age, she has lived with chronic illness and shared her story for much longer than I have.

As we began to connect more personally, I found out that she is a teacher at heart. She understood my deep sadness at having to retire before I had planned due to developing Fibromyalgia. Also, she is a lover of books. As a 6th grade English teacher, I am well versed in adolescent literature. However, Carrie is my new source of book recommendations in adult reads.

Carrie’s website My Several Worlds is a nod to the famous author, Pearl S. Buck and her namesake novel about her life in China. When Carrie started MSW in 2007, she focused on writing about her life as an expat and her adventures in Taiwan. At 34-years old in 2009, she began writing about her journey with chronic illnesses: fibromyalgia, ME/CFS, and ankylosing spondylitis.

“My illnesses have shaped my worlds and have inspired me to support other patients,” Carrie explains. This past year, after 12 years of being a patient advocate through bringing awareness, resources, and support, Carrie was nominated as a WEGO Health Finalist for Life Time Achievement.

This year has been crazy, but meeting you has been a bright spot. Although you’re on the other side of the world and a good 10+ years younger, I have quickly found a special friendship with you, one of mutual understanding and respect. I’m looking forward to sharing your story with the PFL readers. Thank you for joining us.

teal line drawing of lotus flower

Life in Asia: What brought you to Taipei, Taiwan?

Hi Katie. Thanks so much for featuring me on Pain FULLY Living. 

My journey to Asia is a rather long one that spans close to 18 years. The condensed version is that at age 27, I decided I wanted to travel and see the world before settling down. I quit my job and moved to northeast China to teach English. That was back in 2003, and I really enjoyed my time in China. I moved to Taiwan in 2006 after my husband. At the time, salaries were better in Taiwan and we felt that island life might be a better fit for us. We moved from wintery northeast China to subtropical Taiwan and have never regretted it.

I taught in Taiwan for three years before moving into publishing. Most people are surprised to learn that I still write textbooks and reading comprehension books for middle school and high school students. There is an unusual fact for you that most people don’t know about me.

teal line drawing of lotus flower

You run a business in Taiwan using your teaching background. Tell us what all is involved.

Carrie Kellenberger, wearing a mask, hair pulled back, eyes looking pained, sitting in a full waiting room in a hospital. Life with Chronic Illness
Carrie waits to be seen at Taiwanese Hospital.

READ: The Cost of Chronic Illness

teal line drawing of lotus flower

When I was finishing up college with French and English majors and a teaching degree, I was considering going into the Peace Corp. I’ve always been drawn to learning about other cultures. Your business with Reach to Teach sounds like such a wonderful program. How did that get started?

An opportunity came along with Reach To Teach that placed me at my school in Taiwan. I moved into their Global Director of Recruiting position, and it eventually led to me becoming the new owner of Reach To Teach Recruiting LTD in June 2012.

Today, my official job is President of Reach To Teach Recruiting, which is one of America’s largest ESL placement agencies. We place English teachers at schools all over the world, but most of our positions are in Taiwan, South Korea, and China.

Link to REACH TO TEACH IN TAIWN

Daily

My day to day business with Reach To Teach is pretty busy, and I have to pack it into shortened work hours due to chronic illness. I can get 2-3 hours of work in before I need to lay down. As the owner, I wear a lot of different hats because I’m running our business. I manage our website and Applicant Tracking System. I also liaise with our schools in China and Taiwan, and I have to manage my teachers here in Taiwan, while prepping new teachers to make their move to Taiwan. 

Managing Work and Chronic Illness

Healthwise, it takes a lot out of me. There are days I have to push through and when I hit weekends, I don’t want to see or speak to anyone else. I just want to rest and recover. But I also count myself lucky that I have my own businesses and that I’m still able to work from home and earn money. I know many people in my situation do not have this kind of opportunity.

Healthwise, it takes a lot out of me. There are days I have to push through and when I hit weekends, I don’t want to see or speak to anyone else. I just want to rest and recover. But I also count myself lucky that I have my own businesses and that I’m still able to work from home and earn money. I know many people in my situation do not have this kind of opportunity.

Women of Many Talents

My mornings consist of phone calls to North America to interview teachers. I’m not a huge fan of being on the phone because they trigger cognitive issues and migraines pretty quickly. I try to space my calls out and include frequent breaks so I don’t hit overload. If I have morning calls, I simply don’t answer my phone at all the rest of the day, and especially at night. (Unless my mom is calling. Always answer your mom when she calls.)

The website and our Job Board are the biggest aspects of my business because our website is old. It was coded in 2005, and as we both know, websites have grown immensely since then, so I feel it’s like a house of cards waiting to collapse. (It’s not that bad, but when I compare it to recent sites I’ve built, there is a huge difference.) I’m also responsible for our search engine optimization, which is why Reach To Teach is so highly ranked in Google and other search engines, and I take care of our social media campaigns and newsletters, while managing my staff for Taiwan and China.

Additionally, running my own business for so long and having such a wide skill set has opened many other doors for me, so I get a lot of freelance business from folks in Asia who want a new website or want to know how to integrate a Job Board or a shop into their website. My knowledge of WordPress is pretty extensive, so I’m always happy to take on extra work. I guess that’s one huge benefit to being with WordPress since 2007! 

teal line drawing of lotus flower

Why have you chosen to stay in Taiwan?

It’s hard to say what I love about Taiwan because there are so many things to mention. Today, I’m grateful to this island for keeping me safe and having a proper pandemic response. There is no pandemic here. I adore the people here. I love the food and the blend of cultures, and for such a tiny little island, there is a lot to see and do here. Plus, Taiwan is very modern. There is always something happening here. Taiwan is a very forward-thinking, free and progressive society. It’s exciting to be a part of it. Life seems slow in North America when I go home to visit, although I’m always amazed by the staggering choice and range of products that North Americans have access to. I experience reverse culture shock every time I go home.

teal line drawing of lotus flower

If someone was wanting to visit Taiwan, what advice would you give?

Taroko Gorge in Hualien

READ: 30 Authentic Taiwanese Experiences

For anyone thinking of moving to Taiwan, first off, please feel free to get in touch with me!

Second, be sure to do your research and learn as much as you can. You need to keep an open mind. People here are very kind and understanding, but in my line of work, I often see people show up here and they have very little understanding of cultural differences. 

An example I see over and over again is people coming and saying, “This isn’t how we do this back home.” My reply to that is that they didn’t come here to do things like they do them back home. 

Recently, and especially with COVID-19, I’ve noticed that North American cultures are focused on individuals, while Asian cultures tend to be focused on the group as a whole. That is always a big adjustment for people to get used to.

The point of moving abroad and immersing yourself in a different culture is to learn and grow as a person. You don’t move abroad to do things the same way you’ve always done them at home. You move abroad to learn about different cultures and ways of doing things, and this eventually leads to global citizenship, which is a wider understanding of the world. The individual starts to discover their own place in the world as a world citizen and begins to learn more about valuing diverse cultures.

Every country is different and as global citizens, we need to recognize this and be respectful. If you’re interested in learning about life in Asia or life in Taiwan, please visit My Several Worlds. I have hundreds of travel articles on MSW mixed in with articles about my journey with chronic illness. There’s something for everyone to enjoy on My Several Worlds.

teal line drawing of lotus flower

Tell us about your home life and family growing up. 

Katie, I can’t believe you found this photo! I’m number 15 and played point guard.
My dad is in the beige sweater standing to the right of this photo.
He’s wearing glasses and we were celebrating our first big championship win that year!

My parents are both teachers, so I’m sure you can imagine that I moved into teaching naturally. As a child, I’d help my mom prep her kindergarten classroom with decorations and when I was old enough, I volunteered in her classroom to get some experience before moving to China.

My dad was Head of the PE department at our local high school, so I had the pleasure (and experienced the dismay) of being taught by both parents. My dad coached me in everything – basketball, track and field, downhill racing, skating, gymnastics, badminton, you name it, we did it. (You can see him to the right of the photo above wearing a beige sweater and glasses.)

We grew up thriving on sports, so I was very athletic up until I got sick. Some of the injuries I sustained in high school now make sense. Most people don’t dislocate their shoulder in volleyball or basketball. (I dislocated both shoulders.) I also dislocated my knee coming out of racing blocks in the 100 meter dash at age 21. That was a sign of things to come.

READ: The Lunar New Year and its Impact on Chronically Ill Patients Like Me

teal line drawing of lotus flower

How is it you and your husband met? Being he’s an American and you’re a Canadian, how is it you both chose to stay in Taiwan?

This is the gala event Carrie organized for several years for sick kids at MacKay Memorial Hospital in Taipei before she got too sick to do continue organizing it.

I met my husband in China a year into my teaching contract, and we’ve been together ever since. He is from America, but we met while he was in China for a work internship program. We decided to move to Taiwan together in 2005 and we got married in 2008. I got my diagnosis two months after our wedding ceremony. We had no idea what it meant back then and were really unprepared for what happened and how it progressed so quickly afterwards.

It has been a tough adjustment for both of us. We were able to keep traveling for the first three years after my diagnosis until I got too sick to keep up with it. We are on our own here in Taiwan and like most expats, we do not have family nearby, so he’s my primary means of support and has to handle all the tough stuff that I can’t help him with anymore. He doesn’t talk much about what has happened, so I can’t speak for him or say how this has affected him. All I know is he’s in my corner 100% and he moves heaven and earth to make things easier on me. It has been wonderful to travel the world and see so much of the world (over 35 countries) with my best friend.

READ: LETTING GO WITH CHRONIC ILLNESS DOESN’T MEAN GIVING UP: HOW TO SIMPLIFY LIFE WITH CHRONIC ILLNESS

teal line drawing of lotus flower

Where did you teach?  Why did you go into teaching?  When/Why did you leave? 

I’ve taught informally in Canada. At age 26, I introduced a kinder-beading program into senior kindergarten classes that was a fun activity for five-year-olds. Beading taught them pattern-making and math skills. I’ve taught art classes since I was in my early 20s across many mediums with students of all ages.

I was an English as a Second Language (ESL) teacher in Changchun China for three years. Then, I taught ESL in Taiwan for three years, and when I moved into publishing, I had to travel to schools to teach teachers how to use our textbooks and ESL magazines. I have continued teaching art classes now, so I’ve never really left teaching behind.

Working with teachers over the past decade and also having taught myself, I see the stress and burnout and lack of self care that happens with teachers. I can tell you plenty about that, but that would require another article. 

teal line drawing of lotus flower

As a teacher who retired due to difficulties with Fibromyalgia, I have felt strongly that the teaching profession needs help to lessen the stress that is innate to the job. I’d love to help educators learn many of the stress management techniques that I have learned since retiring. What have you experienced as far as stress and teaching?

Part of my job with Reach To Teach is prepping teachers for what they are entering into in Taiwan with a teaching position. I’m amazed at how many people think teaching is supposed to be easy. It’s never easy. Not in any capacity. There is a lot of work that goes into planning and presenting your classes, and there’s follow up work and work involved with assisting your students. I’m surprised when teachers expect that there is no take-home work with teaching. 

Having grown up in a teaching household, I can say that my parents brought home plenty of work outside of school. That’s just part and parcel of working in education. 

If anything, teaching is one profession that will really separate the wheat from the chaff. You’ll either do really well with it or you’ll discover it’s not for you. Teaching is a rewarding profession, but it’s also a profession that requires discipline, excellent time management skills, a willingness to take on challenges that come up at the last minute, and a desire to work with your students. It takes time to learn all of this. I’d say that most teachers even out about six months into their new teaching positions, but those first six months are tough because you’re learning as much as your students are. The best teachers are the teachers who learn as much as they are teaching.

teal line drawing of lotus flower
Carrie Kellenberger, smiling and long dark hair, surrounded by young children who are in her REACH TO TEACH program in Taiwan.
Carrie with her students in the
REACH TO TEACH program.

Life in the day of a teacher;)

My last teaching job was a real disaster and it was a very stressful job because the school was not organized and didn’t communicate properly with their teachers. I was teaching in a kindergarten and had 25 five-year-olds in that class. The school had me teaching in the kitchen! 

Teachers would come into my classroom on my lunch to do their cooking classes. It was very disorganized and chaotic. 

One day, a teacher was using my classroom for her cooking class and left her muffins in the industrial oven in my classroom. We came back from PE and everyone got settled at their desks, and then one of my students asked if something was burning. I never clued into the oven being on because who would do that knowing there is a group of 25 five-year-olds coming in at 2pm?

Anyways, the muffins were on fire and the kids were freaking out. I got all the kids out of the classroom, somehow managed to call the secretary and tell her what was going on in Chinese, and then wouldn’t you know it? I didn’t have the strength to get that darn muffin tray out of the oven. At that time, AS had already hit my shoulders and knees hard, so I had no strength to get that tray out. 

So the tray was in flames, the fire department came, and I left the school immediately and said ‘never again’. That school is famously known as ‘The Zoo’ in Taipei and for good reason.

teal line drawing of lotus flower

When did you start to really notice something was off physically? How did it affect your life?

That last classroom incident was in 2008, and that’s when I started noticing a landslide of joint pain everywhere. I had days when I couldn’t lift my arm or days when I couldn’t put weight on my foot or my legs. Some days I’d stand up, and it felt like I was standing on broken glass in bare feet. 

But it came and went, so I put it down to working out, just like my doctors had told me in Canada. My doctors thought I was too young to be experiencing serious pain, so I heard ‘hypochondriac’ a lot in my late teens and 20s. 

teal line drawing of lotus flower

That is so discouraging that doctors don’t take young people seriously when they have complaints. Certainly, having a doctor mention hypochondriac (even if not in those words) just fans the doubt we already have with what is going on in our bodies.


Yes, it does!

Clearly, I’m not a hypochondriac, so my point here with any new patient is to trust your gut and always get a second opinion. Don’t let anyone tell you that you don’t look sick, or you’re too young or let them dismiss your pain!

By mid-2008, the pain was constant and within six months, the doctors here in Taiwan gave me my axial spondyloarthritis diagnosis. I received my diagnosis two months after my husband and I were married in Mexico.

There was a trail of symptoms leading up to my diagnosis. I suffered close to 15 years before I got an actual name for what I was living with, and I had symptoms in Canada, China, and Taiwan. I was showing more severe symptoms of illness in China between 2003 and 2006, but there was no sudden onset of illness with me until 2008.

READ: My Ankylosing Spondylitis Story

teal line drawing of lotus flower

Wow, what a difficult diagnosis to hear just months after your wedding. It’s amazing that the doctors in Taiwan diagnosed it so quickly after so many had ignored it.

I’m very grateful to my doctors in Taiwan who never dismissed me and took me seriously from the get-go. I still find it strange that I had to get my diagnosis in a foreign country because no one would listen to me in my home country! After my diagnosis, AS hit hard and fast and there was nothing we could do about it. AS is a very progressive and serious disease and it had gone undetected for over a decade.

I received my Fibromyalgia and MECFS diagnoses in December 2014 and that was a whole different level of pain that I was dealing with. 

Since then my health has snowballed into a string of diagnoses, and I seem to be adding something new to my list of things to deal with each year. My most recent diagnosis is Psoriatic Arthritis, which is what I thought I had back in 2009! 

READ: Fibromyalgia-What You Need to Know

teal line drawing of lotus flower

What do you do to manage your pain? 

Everyone handles pain differently. My primary med is a biologic called Enbrel, so that has helped immensely in taking away some of the spinal pain I deal with. I also rely heavily on daily painkillers. That’s just part and parcel of living with AS and fibro. I use many different natural coping techniques to get those feel-good endorphins going, though. 

Having good coping techniques is a huge part of living with pain and it’s an essential part of self-care. 

  • Hot magnesium baths, three times a week is a must. I soak for 30 minutes at a time in a Japanese tub, and I make my own spa mix:
    *1 cup Epsom salts, ¼ cup magnesium chloride flakes, a squirt of almond oil for soft skin and a few drops of my favorite essential oil. (I love jasmine and lavender.)
  • Art is a huge coping technique for me and I spend a few hours each day creating art. I practice floral arranging and indoor gardening. I’m also an Ikebana master. (The art of Japanese floral arranging.) I make jewelry, color, paint, and I’ve taken many photography classes. Basically if it’s art, I’ll happily give it a try.
  • I’m a huge reader, as you know. Losing myself in books is a great distraction technique for me.
  • Blogging and writing is a great form of therapy that I genuinely enjoy. If I’m able to sit up, writing is a joy and I love building on my site and also assisting others with their sites. 
  • My advocacy work involves lots of volunteer work, and I find that giving back to organizations that have helped me, whether it’s by sharing my story or writing content for them, always leaves me feeling good.
teal line drawing of lotus flower

Do you have any advice to others who live with chronic pain?

For anyone who is living with chronic pain, I’ll leave you with these words of wisdom as someone who has suffered from debilitating pain for over a decade. 

Pain changes you, but it makes you stronger and more compassionate. Remember that you’re not alone.  

It’s okay to talk about your pain. Don’t be afraid to reach out to others, whether it’s via a support group or to other patients directly. Knowing that other people are experiencing some of the same things you’re going through makes it easier to get through. 

Never be afraid to use your voice and advocate for yourself. As someone who has been advocating for awareness for 12 years, I’m happy to speak with anyone who wants to chat and I’m always here to lend a listening ear.

READ: Let’s Talk About Pain

teal line drawing of lotus flower

Wow, Carrie! Such amazing adventures you’ve led. Yet, I know we’ve just scratched the surface. I sure appreciate you spending this time with us. I know that many PFL readers will find encouragement in your sharing.

Thanks so much for having me, Katie! You’re an amazing friend and advocate, and I’m so glad that 2020 brought us together.

teal line drawing of lotus flower

Carrie is a phenomenal patient advocate, teacher, and friend. I highly recommend checking out her site for great travel articles, book reviews, and chronic illness information. Oh, and if you’re looking to teach in Asia, contact her through her Reach to Teach program. I sure would do it if I were starting all over again.



teal line drawn waterlily with teal lettering of the title and motto

Bright blue sky behind a natural arches in Arches National Park with Title Text in White: Traveling Across the USA in the Time of COVID-19: Living FULLY Despite Pain

Traveling Across the USA in the Time of COVID-19

What was supposed to be our 35th-anniversary trip this past May, turned into a fall adventure this October. As a newly retired teacher, this is my first trip during “school-season”. With Covid-19, though, I really wasn’t thinking we should travel beyond our safe confines of home. And while most of our reservations made for May were able to be canceled, we had one VRBO rental that wouldn’t refund our money but allowed for us to rebook. “October, yes, that will be a safe time,” we agreed last spring never thinking that this virus would be actually raging in every state but three across our country.

After doing a few backpacking trips away from home but still in our state, we decided that we could use enough precautions to remain relatively safe. We packed our car with everything we’d need to be mostly independent. We brought some freeze-dried backpacking meals and our Jetboil backpacking stove for meals on the road and vowed to eat at establishments that respected mask-wearing, leaning towards those that had outside dining available.

As we drive across the country from Michigan to Utah, I’ve decided to write about how I’m handling the trip healthwise as well as notice how the people in each place we visit are handling the pandemic. I will be using this month’s October prompts from A Chronic Voice: Producing, Acquiring, Switching, Disappointing, and Forming. Being I have spotty Internet access, I’ll be writing a bit here and there and hope to capture the complexity of this moment.

Time to Transition From a Time of PRODUCING

“Autumn shows us how beautiful it is to let things go.”

Unknown

A dirt  two-track covered by golden aspen leaves going through the middle off into the distance.  On either side, white aspen tree trunks, their branches still holding onto golden round leave, lit up by the sunny blue sky.  Green pine fill in the lower portion under the aspens.
My soul soared as we walked through this pine and aspen tree forest.
The beauty of letting go becomes obvious in this setting.
There’s a sense of peace that comes from the high energy of summer to the mellowness of autumn.

The summer months are a time of producing with September being the time of harvest. The fall is a time of slowing down, reflection and letting go. I have spent this summer focusing on producing a quality blog and becoming a patient advocate for those living with chronic illness. To do this, I switched from a free website platform (Blogger) to a paid platform (Lyricalhost.com) which has bumped up the level of what I can do on my website. Devoting time to learning new technology, becoming involved in groups that focus on supporting those with chronic illness, and developing new connections within those groups has been greatly enriching for me. The time and effort I’ve given to this gives me a purpose and helps me to grow an area of passion.

With last month being Pain Awareness Month, I poured extra time and effort into producing, reaping new connections and skills. Instead of one post a week, I wrote six total: two of which were interview posts (my first attempts) and one was a collaboration with another chronic illness blogger. A Facebook Group that I help to moderate, Chronic Illness Social Pod has started a new Instagram group @cispfriends. It’s in its infant stage, but I’m excited to be a part of it. I had to make a 1-minute video to help explain the purpose of the group. It took me about 3-hours to create and two-minutes in length, ha! ha! Besides all of that, I spent many hours learning new skills for blogging as well as connecting with others from the chronic illness community and sharing out on my social media. This can consume a lot of time, energy, and focus.

My intro video for CISPfriends Instagram Group.
We welcome any blogger who lives with chronic illness to join us.

So, it’s been quite a transition into stillness as we’ve traveled from Michigan, through Iowa and Nebraska, to Estes Park, Colorado, and on into the National Parks of SE Utah. Literally, I would say most of each day has been a forced detox from all things digital. Not only is there no Internet connection, often no phone connection, but we also haven’t been able to listen to the radio. I do have a downloaded audiobook that I have listened to as well as off-line Pandora and Calm guided meditations. But, mostly, we have quiet. This has led to simple yet meaningful conversations between my husband, Kelley, and me as well as just hunks of silence as we soak in the scenery.

By the time we’ve gotten to our place to stay each night, I have been too tired to do much of anything online. At first, I was feeling a bit guilty for not keeping up with my “blogging work”, but I’m seeing this time of being unplugged as a good time for reflection as to my goals and savoring the connection to Kel and our time in nature which we both find restorative.

Driving into Dixie National Forest listening to Simon and Garfield sing
The Sound of Silence via our off-line Pandora station.

ACQUIRING Respect for Mother Nature’s Power

I saw old Autumn in the misty morn stand shadowless like silence, listening to silence.

Thomas Hood

Golden aspen trees and dark green ponderosa pines in the foreground with the smoke-clouded Rocky Mountains in the back ground.
The Rockies were a bit smoggy due to the extensive fires happening in the west. While the courageous frontline firefighters are doing their best to put them out,
it’s only at the mercy of Mother Nature that they can really get any control over them.

Since early March, those of us in the USA have come to acquire a new respect for Mother Nature. In this day of technological advancement, we get the wrong-headed notion that we are in control. 2020 has shown the world that, no, we cannot control the march of nature. COVID-19 will run it’s course whether we try to intervene or not. Yes, we hope to be able to contain it through health protocols of wearing a mask, social distancing, and washing our hands more often, but it will do as it will do, much like the fires that are burning much of the west. Viruses, fires, murder hornets, hurricanes…have all shown us that we are not the ones in control.

My husband, Kelley, and I had one scary event that brought home just how powerless we are. We were on our drive from Estes Park, Colorado through Rocky Mountain National Park to our next destination, Moab, Utah. At the very top of the mountains 12,000 ft elevation via Trail Ridge Road, we lost all connection, even the ability to make an emergency phone call. What we flatlanders of Michigan (and other states like Nebraska) don’t always consider is the lack of oxygen at that level. Kelley and I were somewhat adjusted to it due to the hiking in the park at Bear Lake Trailhead to Emerald Lake at 10, 000ish ft elevation which was a gain of 600 ft. However, getting out of our car at the various scenic pull-offs into the bitter winds on top of the harsh tundra at the top of Sundance Mountain was still a challenge.

Debating to stop for a bathroom break, Kelley started to slow down when we saw an older woman waving her arms at cars as they passed. I have to say, things are a bit surreal in my memory, seeming to move slowly and out of reality. We parked as she quickly walked over to us, out of breath and visibly upset. “Thank you for stopping. I didn’t think anyone would. My husband has passed out,” she pointed to the heavyset man slumped in the driver’s seat of their van. “He has COPD. I don’t know if he’s breathing. He is making some gasping noises now and then.” Kel and I rushed over, seeing that the older gentleman was indeed unconscious but thankfully breathing, as his chest was rising and falling. The shaken woman explained that they were from Nebraska and hadn’t been in the Rockies for many years, “We haven’t been in the mountains since he developed COPD, among other issues. We just thought this would be a safe get-away because we were afraid of him getting the virus.” She asked if we could call for help because she had no service. I knew we didn’t either, but I had thought the 911 would work; turns out it doesn’t in remote places like this. Just then a white Rocky National Park truck with FIREFIGHTER on the side went by. I waved and jumped, but he continued on, not seeing us.

We then looked to power-up the man’s C-Pap, but she didn’t have a converter that would plug into the power sources of her car. That was when we realized that the only thing to be done was to get them down the mountain to where the air was more saturated with oxygen. She said she’d be able to drive, although, “I’ve never driven in the mountains before,” she explained, obviously nervous and worried. We decided to move him from the driver’s seat to the passenger seat just behind. Moving the seat back and sliding open the side passenger door, we prepared the area by moving their beagle and his bed over enough so the elderly man had a place to sit. However, Kel and I knew trying to pick him up was going to be nearly impossible for us. Luckily, he “woke-up” although he was pretty incoherent. We were able to explain what had happened, and he agreed to move to the back with our help. Kelley took his arm and with a bit of lifting and guidance, he was able to get him slid into the seat. We got a pillow that they had packed to prop under his head. He thanked us and assured us that he was okay for them to drive back down to Estes. Kelley told her just to take it slowly, and it would be doable to drive down the steep and winding road. We watched them drive off as we headed down the other side of the mountain, leaving us to worry about how they fared.

DISAPPOINTING Times

Another fall, another turned page: there was something of jubilee in that annual autumnal beginning, as if last year’s mistakes had been wiped clean by summer.

Wallace Stegner

Man wearing a blue hospital mask with a wide brimmed hat, next to a woman with white, long hair wearing dark sunglasses and blue hospital mask, in front of seated people wearing masks.
My husband and I have mostly felt safe while traveling. Here, we’re taking the Zion shuttle bus. They removed seats to allow for social distancing. Masks were required.
Also, the beautiful weather allowed for windows to be open.

We planned to be careful as we drove the 1,776 miles between Michigan and Utah: stay to ourselves as much as possible, eat out in places that had outside seating and safety protocols, and sleep in higher-end hotels that were taking the protocols seriously and had the means to thoroughly clean rooms.

However, dead tired after driving 8 hours our first day and 2 more to go to get to our first hotel, we stopped in a small town off the highway in Iowa to fill up on gas and get dinner. After having face-mask order in our state of Michigan (as well as the other precautions), I was really shocked when we stopped at the gas station to see so many not wearing facemasks. Then, when we drove into town hoping for a meal, we came upon the only non-fast food restaurant that was open. The reviews on Google sounded good, so we went in. No one was wearing masks; however, they were social distancing the tables. I’m sorry to say that we gave in and had our meal, sitting as far away as we could from others and close to the door, but I didn’t feel comfortable at all and have been worried ever since. 14 days later, thank goodness, we don’t have any symptoms of COVID-19.

After that experience, we committed to not being caught off guard again. Luckily, every hotel we’ve stayed at along the way has had good safety protocols. The National Parks, all have had mask requirements, ensuring as much social distancing as possible by requiring reservations for shuttles and only allowing a certain amount of people in enclosed spaces at any given time. They are also providing hand sanitizer in almost every public place of gathering. I’ve been thankful to the other visitors who are being respectful to give distance on trails and in open spaces and who wear masks whenever we can’t be 6ft apart.

On our first night in Utah, we stayed in Moab. We were able to go on a Sunset Cruise on the Colorado River to view the canyon walls and night sky (a designated dark sky zone). Before the cruise, we had a delicious “cowboy” dinner in which safety protocols were followed. Before the boat ride, we had time to use the restroom that was outside of the dining area. My husband, known for his sneezing fits whenever he looks into the sun, took a step out onto the patio leading to the restrooms. The sun was still bright and like clockwork, he began to sneeze. He had on his facemask. When the gentleman more than 6 feet away noticed me looking uncomfortable about Kelley sneezing, he said “Bless you!” Then, he went on to say, “Before COVID, we said ‘Bless you.’ Now, we say ‘Oh Shit!'” and he jumped out of the way to emphasize. We all started to laugh. I kept laughing at that for some time and am snickering as I write, imagining his body contortion as he dodged Kelley.

One small town where we stayed two nights at a wonderful bed and breakfast (being careful to take care of it’s travelers by timing out breakfast, social distancing, and providing hand sanitizer), we ran into problems with no COVID-19 prevention protocols being followed. This town population of 240 and its county of fewer than 3,000 souls are deemed “green”, thus not needing to follow facemask, social distancing, etc. within their businesses. However, this is a town of TOURISM being it’s so close to Capitol Reef National Park (and others). So, it is crazy for them to think they’re safe when people from literally all over the world are coming there (some because it IS a GREEN COVID-19 area). Kelley and I were prepared this time. We went one night without a meal, too tired to pull out the Jetboil. My stomach was upset anyhow, so Kel ate his GORP and called it good until the wonderful breakfast of eggs and potatoes the next morning at the bed and breakfast. The next night, we called one of the restaurants to see if we could get take out, feeling that would be okay, the owner actually told us they did not provide that service but tried to convince us to come in for a meal. We instead, found a burger and ice cream place that had outside seating and the staff was wearing masks. When Kelley told the worker who took our order behind a plexiglass guard that we appreciated them taking the care to do the protocols when no one else in town seemed to be, she said, “Well, we get a lot of visitors from all over here. We’re protecting ourselves and our guests.” Yes! That’s exactly what I thought should be the sentiment.

I decided to look into the situation more. I found out that the town had had only two infections up to that point- a child and an adult. However, they also only have a traveling doctor who visits two days a week. The bigger towns with tiny-sized clinics are about 50 miles away. At the time we were there, the news showed that Utah’s COVID-19 wards were near to full and cases were climbing in the state. Being much of the state if VERY rural (no services in many areas), there just isn’t a lot of fully-equipped hospitals with skilled personal. Should the little town of 240 be hit by the virus, oh boy…I can’t imagine! One resident who was elderly and had health issues wrote to the local papers that she wouldn’t be able to participate at all in her community because they weren’t going to put in the simple protocols of mask-wearing and social distancing. How lonely and scary that must be for her and others whose home is in that town and county.

And in the last couple of weeks, we have learned that the mandates set by our Michigan governor had been narrowly voted down by the Michigan Supreme Court. So as we prepare to head home, we are essentially going back to that town in Iowa that won’t be following any safety protocols. This is beyond disappointing. This is dangerous. I’m thankful to hear that the school districts I’m in contact with are keeping with the protocols they established at the beginning of the year and that the health departments are stepping in to give guidance. I just wish that our national government would put safety protocols in place so that traveling through our country wouldn’t be such a gamble.

SWITCHING From Fear to Awe and Pain to Peace

If a year was tucked inside of a clock, then autumn would be the magic hour.

Victoria Erickson

Smiling man with redish beard and little hair on his head is taking a selfie with smiling woman wearing a blue baseball cap.  Behind them is a red sandstone Natural Bridge of Bryce National Park.
The beauty of Bryce National park takes a back seat to the realization
of the force and time that it took to create it.

I have to say that being in Utah this fall has been pretty magical. I mean this on several levels. The scenery (which really isn’t a just word for what we’ve seen) is inspiring to say the least. My mood has gone from fear to one of peace and joy. Seeing these immensely awe-inspiring rock formations that have happened over billions of years has helped me to put myself and this time into perspective.

Physically, I am feeling better than I have in quite a while. Just before our trip, I had been in a Fibro Flare for three or so weeks. That included higher levels of pain, brain fog, fatigue, and depression. But in the past 16 days, I’ve been feeling next to normal. Yes, I have pain (I always have it nearly everywhere on my body), but I’ve been able to manage it. In the car, as we drive from place to place, I’m using my two Yogu balls under my thighs, my back from shoulders to lower back, under my bum and hips, helping to release the tightness of my muscles. I also have my Renpho massager which is battery powered, fully charged for in the car. I use this on the tops of my thighs, stomach, feet, calves, chest, and neck. I brought my newly purchased YUYU hot water bottle for in the car which I can fill up with hot water using our Jetboil stove.

Each day, we’ve hiked between 6-9 miles many times with elevation changes- some as little as 100 ft and others as much as 800 ft. I had one down day that had me really feeling unwell and had taken me by surprise. After that, though, we’ve made better plans to pace, taking rests during the hikes more consistently (using my FitBit to watch for changes in my heart rate) and taking full days for rest, like I am today. When we get back to our home spot (with electricity, water, and Internet), I’m using my heating pad, massager, and shower. During our hikes, I stop and do yoga-type stretches, using my walking sticks to help with that. As well as I am taking moments throughout the day to do short breathwork meditation.

I’m not fully certain why I’m doing so well. Is it the dry air of the dessert that everyone says can ease joint pain? Is it the medication change I made? I’m now taking my Low Dose Naltrexone two times a day (instead of one time at night). I now take 2.5 mg at bedtime and 1.5 mg on waking. Or is it, as my husband thinks, the fact that I’m being more physically active? Could it be spending most of my waking time in nature and not connected via the Internet and phone? I don’t know what it is, but I sure am thankful for this time of being able to live more FULLY.

FORMING

Life starts all over again when it gets crisp in the fall.

F. Scott Fitzgerald

Smiling woman's face; she's wearing dark sunglasses and has her white hair pulled back off from her forehead.  In the background is a river, trees, and mountains.
Hiking back from the Narrows of Zion National Park.

Sitting on a boulder next to the Virgin River in Zion National Park, I sat in wonder at the development of the rock formations that surrounded me (and those I’d seen on the rest of our journey through this area). Ever so slowly, patiently the elements have carved out these spectacular, seemingly impossible places of beauty and tranquility. One luxury I carried in my waist pack was my journal and pen. Feeling, finally, the spark to write, this came tumbling onto the page.

A poem in white font within a brown square set on top a photo fo the red rock formations of Bryce Canyon.
Not all the rock formations were created through flowing water.
Some were created through the freezing and thawing of moisture as well as wind.

My hope continues because of this. No matter what we face, if we persist, no matter how weak our efforts seem, we can, in the end, form a new and brighter dwelling place within ourselves, our communities, our world. We can’t give up. We must not give in. We must fight for what we know is right, for our own selves (as in taking care of our bodies), for our disenfranchised communities, our fractured countries, and most importantly our hurting Earth.

What are your thoughts on traveling during the Pandemic? I am really glad we took this time to see areas of the USA that we hadn’t. I’ve found new inspiration and hope through what we’ve experienced.


The format for this post is thanks to A Chronic Voice linkup. This month, the topics were Producing, Acquiring, Switching, Disappointing, and Forming. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at October 2020 Linkup (scroll past the prompts to find the linked up posts).



teal line drawn waterlily with teal lettering of the title and motto
Up in the Air: Struggles with Flying, Fibro Flare, and Acceptance

Up in the Air: Struggles with Flying, Fibro Flare, and Acceptance

back ground of blue-whte fluffy clouds with airplane aisle with passengers seated, to the right in a transparent dark blue cloud shape  in white text is the title. Underneath in white font is the website and teal waterlily logo.
Photo by Skitterphoto
While I have appreciated flying with Delta
Airlines, the long walk to the back of the plane,
being stuffed between to bigger men,
three tight transfers, and mysensitivity
to all things in motion,
made for a very challenging trip.

This week, my husband and I splurged on a ticket for me to join him in Pasco, Washington. Kelley does contract work that causes him to travel about one week each month. Being I had never been to the state of Washington and he was going to be gone from Monday to Saturday, we decided that I would come along.

Not Prepared

I blame myself (and my brain fog) for how the trip has gone. After a pretty active and clear-headed week, I found myself very tired and foggy last Saturday. Being we’ve always packed a day or night ahead of any trip, I didn’t even consider planning ahead. BIG MISTAKE! I really haven’t been on any long travel trips since before my diagnosis. The last big trip (driving from Michigan to California and back) was two years ago and the beginning of the unusual, constant, deep pain roving all over my body.

And so, Sunday, while not horrible, found me not at all motivated or clear-headed when I packed just before bedtime. My belligerent body, seemingly because it knew we’d have to get up at 4 am, decided then that I didn’t need to sleep at all. And so, I was awake and ready to go by 4:30; however, my zombified brain didn’t consider that I didn’t have my purse with me until we were nearly at the airport, one hour away from home. Of course, no identification meant no boarding.

screen shot of text between myself and husband.  Husband sends can't believe it emoji in response to my finding my purse in the back of the car.
My text-conversation with my husband. Me from home. Him in the airport waiting to take off for Seattle, the flight we both should have been on.

Good News, Bad News

Being we didn’t have flight insurance (something we may have to bite the bullet and pay the extra fee next time), we didn’t expect that I would be able to go. However, Delta, being overbooked for that morning’s flight was asking for volunteers to take the later flight. My husband was able to get them to add me to that ticket at no extra charge to us. So, off he went, with me driving home to better prepare for my travel.

It was a bit of a knuckled drive home due to icy conditions on the roads, and I was struggling to keep awake. I felt like I was in some out-of-body state. However, I made it home safely and was really looking forward to cuddling back into bed for a few hours of sleep. Determined to get my purse into my backpack so that I had everything ready for later, I looked for it hanging on the hooks in the mudroom. Not there… So, did I leave it in my car (a bad habit I’ve gotten into lately)? Nope. Where could it be? Then, it dawned on me. I rode in the backseat of my husband’s car(the one we took to the airport that morning)with my granddaughter three days ago when we took her to a water park for the day. I walked meekly to the garage where I had just parked it and looked into the backseat; sure enough, there it was.

Even so, I really didn’t let it get to me. I was actually thankful for the extra time to myself to get some sleep, do some yoga, and just rest, knowing that I’d be stronger for the flight the next morning.

Seated in the airport, image of knees in black pants, with black backpack and hot pink fuzzy half-moon headrest.
Feeling confident and prepared,
I started my Tuesday morning
pretty alert and energetic.

Let the Games Begin

I felt ready. Starbucks’ non-dairy splurge coffee made me feel like a pro. It wasn’t until my short flight to Detroit that I really looked at my tickets. I was arriving at A5 four-minutes before boarding started for my flight to Salt Lake which was leaving from gate A-65. Hmm… I realized that I was going to have to sprint. I made it and had time to pee before getting on because I was in one of the last seats on the plane (beggars can’t choose better seats). As I carefully walked down the narrow aisle, guarding my backpack so as not to hit anyone, I saw my seat, middle-stuffing between two bigger guys. Luckily, I don’t mind smaller spaces, or so I thought.

Boy, I now realize that being confined without ways to stretch really isn’t good for my tightly-wound body. It was a long four and a half hours. I had chosen not to travel by myself while on Bonine for my motion-sickness and forgot my ginger chews, so as the flight progressed, I began to get a strange dizzy-headache that then lead to a hardball forming in the pit of my stomach. During the last 45-minutes of travel, I did nothing but work on closing my eyes and slow breathing. I was glad to get off without having to use the little paper bag provided in the seat pocket in front of me.

The last connection, again a very tight-transition time, caused me to have to get directly on the flight to WA. I was in the very last row of this puddle-jumper airplane and knew from the get-go that it was going to be a rough trip for me. I didn’t open my eyes until the wheels touched down an hour and a half later. Meditating got me through the time without throwing up, but my body was one big knot, and it took everything I had to get my suitcase and find Kelley waiting for me just outside the airport’s doors.

Image of a hotel room with sitting room, purple yoga mat on the carpeted with purple Coreageous ball on it.
A wonderful room to hang out, write, read, and do yoga.
Unfortunately, I’m still feeling like I have
motion sickness.

Not Feeling the Acceptance

I’m struggling with acceptance.  Today is the third day of feeling like I’m still motion-sick with added muscle pain literally everywhere.  I’m feeling so weak, dizzy, light-headed, and nauseous in addition to aggravating, whimper inducing pain at every point of my body. I really had wanted to use this get-a-way to write, read, and practice meditation and yoga while Kelley went off to his job. While I am doing some of that, it’s coming hard.  I’ve been feeling a bit defeated in the whole practicing of acceptance. I have this gnawing doubt that my life with Fibro will never get better and that going on Cymbalta just maybe my only option.

But still, I plugged on the past couple of days searching for anything that proves I’m on the right path of rewiring my brain through meditation and mindfulness.  I went down a neuroplasticity and meditation Google research path that took me to an open door of hope.

A close up of an 8 brown rock cairn on a beach that is blurred out.
Mindfulness-Based Stress Reduction by
Jon Kabat-Zinn is a scientifically
researched 8-week meditation class
that has shown great results for
people with issues like chronic pain.

Have You Heard of MBSR?

I hadn’t heard of Mindfulness-based Stress Reduction Therapy until I stumbled on the research paper titled “Mindfulness- and acceptance-based interventions for patients with fibromyalgia – A systematic review and meta-analyses”. The report talks about how participants in 8-weeks of meditation classes of 30-40 minutes a day caused noticeable, positive changes in their brains. This led me to find the developer of MSBR, Jon Kabat-Zinn (who I actually have read his book Wherever You Go, There You Are).  I ended up watching a talk he gave to Google employees on their lunch hour: Mindfulness with Jon Kabat-Zinn.  From there, I found various ways to participate in the 8-week course, but all of them would cost a decent amount.  Then, I stumbled on something amazing!  The course is offered online for free from Dave Potter, a fully-certified MBSF instructor.

I started my preparation for the 8-week class today.  Instead of a printed notebook of the materials as is suggested, I’m creating a digital version.  So far, I have it ready through week 1.  Feel free to make a copy of what I have or follow along with me as I add the upcoming weeks in as I go.

Click arrows to go through the pages.  Some pages have links to videos and PDFs.

I’ve enjoyed the meditation that I’ve done through Calm and Jeff Warren, but they tend to be short sessions. They’ve given me the thirst for more, and I think this is a good next step.

Trip Home

In my research, I have also learned that my impromptu travel planning and packing is not the best when you have fibromyalgia. I’ve found a few helpful articles by fellow spoonies that I will use for this home trip and those to come. Also, I’m going to take Bonine which will make me really sleepy, but with Kelley leading me around, I should be okay.

Do you have any travel tricks that make long journeys more bearable and less flare causing? Have you tried MBSR or meditation to help with your symptoms? I’d love to learn from you.