CHRONIC ILLNESS

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.

A chronic illness is a health 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.

My StoryCarrie 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. I was allergic to everything!

Dust, pollen, feathers, grass, nickel, you name it, I reacted to it. I remember endless visits to Dr. White’s office during my childhood for allergy shots, ear infections and everything else that came my way – all too frequently.

Believe it or not, the ear infections have never left. In fact, ear infections are closely related to my fight with AS.

Despite having a weak immune system, I was very athletic 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 can’t do any of those things anymore.

There is nothing I would love more than to be able to go for a run or go to a dance class. It has been one of the toughest things to give up since being diagnosed with Ankylosing Spondylitis.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 never seemed alarmed by large swollen joints that were red and hot to touch. They weren’t concerned about recurring infections and rashes or the persistent low 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 would wake up and not be able to lift my arm up. That has happened many times since. I lose all of the strength in my arm and it feels like it is going to explode. During my time in China and Taiwan, my pain was bad enough that I sought assistance withtraditional Chinese medicine - cuppingnon-traditional methods of pain relief, including Reiki, massage, acupuncture, Chinese massage, cupping 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 excruciating pain.

It literally felt like walking on knives, so I had to rest a lot to get in shape for my wedding.

Luckily, I improved in time for my wedding day, but within two months of being married, I was back in the hospital again in Taiwan.

This time John took me to emergency with two large swollen knees that looked vaguely like bowling bowls. Both knees had to be aspirated. The doctor took one look at me and immediately referred me to the Internal Medicine department at National Taiwan University Hospital. I had my answer within. I was diagnosed with Ankylosing Spondylitis in February 2009. My doctors didn’t give me any information about AS at all, not that I’d expect them to have English medical literature in Taiwan.

That was my first severe AS flare and it took the better part of a year for me to come out of it.

I had excruciating pain in my hips and legs. My knees would swell up and go down. I lived in constant fear of having my knees aspirated again. My knees were wrapped for that whole summer and I mostly stayed indoors with my legs elevated and wrapped in ice. I very rarely left home and when I did, I had great big bandages wrapped around my knees. Whenever I had to walk, it felt like they would snap in half or I’d collapse. Sometimes my legs would give out for no reason. It is a very scary feeling to have.

I went to Hong Kong on a short vacation with my husband and ended up coming home earlier than planned when my legs started swelling before we left. John pushed me around Hong Kong in a wheelchair that weekend.

I walked with a cane for the remainder of 2009 because of the trauma to my knees, hips and feet, and I experienced burning nerve pain that started that summer and that has never really gone away completely.

I’ve tried dozens of NSAIDS and DMARDS, which are the first line of defense for patients in the early stages of AS. The issue with me, of course, was that I had been presenting symptoms of AS for a full 10 years before they figured out what was wrong with me. The damage was already well underway by the time we learned what was going on.

If anyone in 2009 could’ve told me what I was in for back then, maybe I could’ve prepared differently, but my doctors in Taiwan didn’t tell me anything about AS. I researched as much as I could and joined some support groups, but I didn’t understand the seriousness of this disease until it was too late.

As soon as I was off my cane, I was back at the gym three to four times a week, pushing through the pain and fatigue, and working myself to the bone by taking on too many challenges and doing too much at work. I was stressed to the max and didn’t realize it until it was much too late.

I developed severe foot pain and I thought it was from wearing high heels, but then I realized one day that the pain never really stopped, so I stopped wearing heels. I’ve discovered a blind Chinese masseuse in my neighborhood and I see him regularly. He tells me my leg muscles are constantly maxed to the limit. The foot pain continues to this day. Walking is always painful. It literally feels like I’m walking on glass all the time. Some days, I just can’t handle it and I stay in bed all day.

I crashed again hard in late 2012. That flare lasted over a year. I spent hundreds of dollars seeing traditional Chinese medicine doctors to find relief; I tried bloodletting and more cupping. I went to see a traditional Chinese medicine doctor for acupuncture and Chinese medicine. He was famous for curing patients with cancer and he home-brewed a medicinal tea for me that I took for eight months. It made me violently nauseous.

It all made me worse.

Nothing could stop the avalanche of fatigue and pain that was pounding away at my body in relentless and never-ending waves.

I tried endless combinations of medications. Some made me gain weight, some made my hair fall out, some of them made my nails so soft and thin, it was a wonder I kept most of them. All of these medications came with serious side effects that I experienced and that were very traumatic to deal with.

Then suddenly, I stabilized and I regained my strength and I achieved remission for a brief period of time. I felt like me again. I slowly started exercising again and adding new activities into my lifestyle, and for a while, I was successful and in great shape.

Soon enough, I’d overdone it again. Another bitter lesson I learned about my new normal is that it’s easy to overdo things when you’re chronically ill.

Chronic illness.Disability - What Does It Look Like

If you’re still with me, stop and think about it.

It means I woke up one morning and found out I was never ever going to get better.

Incurable.

There is no cure.

Imagine waking up every morning and not being sure if you have the strength to go to the store, take a shower, or even eat.

It means I have to be vigilant about everything that I do now, even if it means bailing out on someone that I’ve made plans with or events that will take a toll on my health.

Being chronically ill requires learning how to find a balance between surrendering and fighting for your day.

In June 2014, I volunteered at an all-day outdoor event in Taiwan in the heat and humidity. I severely underestimated how much that day took out of my energy levels and I didn’t give myself time to rest and recover from the day.

Instead, I chose to fly home to Canada a month later for vacation.

The result?

I went into a severe flare two hours into my trip. The airline screwed up my flight assistance request in Hong Kong, and I ended up walking to get from one gate to the next to catch my connecting flight. The wheelchair arrived five minutes before we hit security and by the time I boarded the plane, the damage was done. There was a massive storm brewing in my body and nothing was going to stop it.

I could barely walk; it hurt to sit and it was torture to stand. I was crammed into an economy-plus seat and thought I was going to die from the pain on that flight home. I had no energy and by the time I arrived in Canada after 30 hours of flying, I was very ill. My parents brought me home from the airport and I didn’t even have the strength to sit up in the car. I laid flat on the back seat the whole way home, biting my lip and trying hard not to cry out from the pain.

I spent most of that summer lying in a bedroom at our cottage watching my mom make dinner and knowing that I didn’t have the strength to sit up and eat with them. I could barely walk for more than 5 minutes without getting dizzy or overwhelmingly fatigued.

I have learned to hate travel of any sort. Me. The person who has traveling the world since 2003!

I have been sick ever since. By sick, I mean that I am in pain all the time. It never ends. It’s always there, waiting to escalate into a level of pain that leaves me hanging breathless on a cliff wondering if I should go to the hospital or wait it out.

I have no energy. I have a definable number of hours during the day that I can be active. I prep for every aspect of my life. I’ve since been diagnosed with fibromyalgia, chronic fatigue syndrome and myofascial pain syndrome, but you’d never know it by looking at me.

This flare has been the worst and longest of my life. I wake up every single day in a tremendous amount of pain. I’ve been in pain for 15 years. I don’t remember what life was like without pain.

I have been seeing the top specialist on AS in Taiwan since May 2015. By the time I got to him, I was in a very bad place. I was suffering from extreme anxiety and depression and I was barely able to function. I had been working half days for over six months, and my days at work were getting shorter and it was taking longer each day to drag myself out of bed.

He started me out on an incredible amount of medications to try and rein my out-of-control immune system into control. The side effects that I experienced from these medications were, at times, worse than my disease symptoms. I have had cortisone shots injected my spine and ribs. I have developed extreme multiple chemical sensitivities. In one case, I had an extreme reaction to a medication that almost killed me, and I’ve had to restrict my diet and the types of products that I use personally and that we use in our home. We were able to get my AS under control in a few months, and for a brief period last summer, I got better.

But then I overdid things again and I completely relapsed. My fibromyalgia has continued to wreak havoc on my body ever since.

It was only a year ago that it became clear to me that I had to be extremely militant about the number of activities I allow myself to do each week in  order to conserve energy and manage my pain. I rest for big events, plan for recovery days, and let try to do what is best for my body. If I can’t do something, I don’t do it, and I try hard not to feel guilty about it.

I realized several months ago that my doctor has no idea how to treat me and that I haven’t responded to his medication regimen. I constantly tell him I am a medical mystery and he agree with me. He asked me to start branching out to a team of specialists.

I was supposed to see another acupuncturist, but I nixed that idea based off three prior incidents with acupuncture, none of which ended well. I have been seeing an insomnia specialist who has been of great help to me.

Through tests, he determined that I’ve only been getting one hour of deep, restorative sleep each night. He has me on medication that has me sleeping now. This has helped immensely with my battle against these diseases.

I have stayed on the basic medications that my rheumatologist gives me for AS, but I’ve weaned myself off the anti-depressants, which were supposed to help with pain but only made me sick and feeling very vulnerable.

I take a variety of supplements now along with my regular medications and I think I am finally starting to come out of this flare. It has been a two-year long flare that I thought was never going to end.

One thing I know is this: No one knows my body better than me.

I wish doctors would make the effort to listen a little better to their patients. Think about what you’d learn if you just listened instead of dismissing my thoughts and ideas.

I still experience a lot of pain and fatigue, but I think my body has reached a point that it can function at. Perhaps 8 out of 10 is my new normal, but I am getting better at smiling through the pain.

I still have lots of days when the tears never stop running down my face and those are the days I lock myself up in my room and prepare for war.

I still wake up every morning and feel like I’ve been hit by a truck. It still feels like I am walking on shards of glass all day, every day, but I don’t have to work as hard to convince myself that it will be a good day. I maintain a positive attitude for the most part.

I know that I have to take great care with my diet and sleep. I know that my body tests me to the limit every day and I know and recognize my limits. Whatever comes, I know that I can deal with it. Nothing is worse than what my own body puts me through on a daily basis.

Because of this, I contribute to awareness campaigns for Ankylosing Spondylitis and for Fibromyalgia to let others know that they are not alone.

Illness is an incredibly isolating experience and at times, it is easy to believe that no one else can be suffering the way you are suffering, but the truth is that there are many of us.

I am also involved with Walk Your AS Off and Walk AS One. I have captained a team from Taiwan called The Walking Spondies since 2014. I also work with both of these organizations by assisting with their awareness campaigns, website, and social media marketing. I work with Walk Your AS Off to shed light on Ankylosing Spondylitis and to provide help and understanding to those who have AS.


 

How I Manage My Chronic Pain

 Pacing for Pain Management

Living Within The Limitations of Fibromyalgia


 Finding Health and Wellness in Taiwan

Glowsticks

Treatment at National Taiwan University Hospital

Healthcare in Taiwan and Patient Safety

Treatment for AS and Fibromyalgia at Taipei Veteran’s Hospital


Alternative Treatments in Taipei

These series of blog posts are articles that I’ve written about the different types of alternative therapies I’ve tried since 2009 to give me some relief with my conditions. I am still searching for the right treatment for me.Gua Sha - Scraping

2013 – Treating Ankylosing Spondylitis with Traditional Chinese Medicine – Dr Lee is famous for successfully treating a number of brain and spine diseases such as stroke and cerebral palsy. He has also been very successful in treating people with chronic autoimmune illnesses.

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, but it didn’t help.

2007 – Cupping

2007 – Scraping

 

Travel and Chronic Illness

Traveling and Chronic Illness

CHRONICALLY ILL ABROAD 

Hurt Bloggers and Chronic Illness Advocate Sites

Ankylosing Spondylitis Resources

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. Click on the Walk AS One Causevox Page to find out how you can assist us with our mission at Walk AS One!

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. They believe that people who understand their AS and how it should be managed will have the best possible outcome. NASS is celebrating its 40th anniversary this year. (2016)

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 original goal was to gather 1,000 faces to show that AS is not a rare disease. 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. AS presents differently in women, and this could be one of the reasons why many doctors still believe this is a man’s disease.

AS health advocates like Cookie, Walk Your A.S. Off, NASS, the CSA, and many other organizations and individual health advocates for AS, are trying to change these misconceptions and educate people, including doctors. Cookie is well on her way to 2,000 faces, and her site has been picked up and is supported by the Spondylitis Association of America. Cookie, thank you so much for everything you do for our community, and for allowing me to share my story. You are a hero and a warrior!

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

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. Men are welcome. Mission: To provide a loving, comfortable environment where women battling cancer and other life-limiting diseases, survivors, and loved ones can come together to share stories, experiences, advice, encouragement, and hope with one another.