A.S. Face 1649: Carrie Kellenberger
My name is Carrie Kellenberger and I was diagnosed with Ankylosing Spondylitis in February 2009 in Taiwan. I was born in a small town in Ontario, Canada, and I’ve been chronically ill all my life.
AS has robbed me of my freedom and my ability to move without pain. It has changed my relationships with my husband, family and friends. Most of all, it has changed me.
Despite being chronically ill, I was very athletic up until three years ago. I excelled at sports throughout high school and I maintained my love for exercise until a few years ago. Today, walking 6,000 steps a day is a challenge for me and the thought of going to a gym scares me.
As a young woman, I had all the classic symptoms of AS. I had persistent low back and neck pain, ongoing knee pain, low-grade fevers and autoimmune fatigue. I had chest pain at the age of 24 that still comes and goes every few months. Someone once fractured my ribs by hugging me too hard.
I do not have the genetic marker for AS, but everyone in my family has an autoimmune-related disease. My grandmothers and aunts suffered from inflammatory arthritis on both sides of our family. My pain has steadily increased since my early 20s. I’m 41 years old now and I am in pain every day.
Before I left Canada in 2003, my doctors never suspected a serious autoimmune condition. By the time I moved to Taiwan in 2006, I knew something was really wrong. My symptoms got worse as the years went by. I was in and out of the hospital all the time from 2007 until early 2009 but no one ever had any answers for me. Every time I went in, it was for something different, so I can’t blame them for not knowing what to look for.
Two months after I got married in December 2008, I woke up with knees that looked like small bowling balls. My husband took me to the ER at Adventist Hospital in Taipei where I had them aspirated. Walking was out of the question for two weeks after that. I used a cane for the rest of the year. My legs have never recovered from that flare; you can still see the damage to them today.
I was referred to National Taiwan University Hospital in February 2009 where I was officially diagnosed with Ankylosing Spondylitis at the age of 34. That was the day I found out I was never going to get better. There is no cure for AS.
It took all year to come out of my first severe AS flare. I had horrible pain in my lower back, hips and legs. My knees swelled every 5 to 6 days. I didn’t leave home that summer. When I did, I never left without my cane and support bandages. I kept my legs wrapped and elevated on ice for two months, trying to quench the fire that was burning through my bones and muscles. Walking was agony. Standing for too long made me feel like my legs were going to snap in half. Sometimes I just collapsed.
The burning nerve pain started that summer in June 2009 and it has never stopped.
Then I developed severe foot and calf pain. At first, I thought it was from wearing high heels, but I realized one day that the pain never let up. It feels like I’m walking on glass every day.
I had small flares in 2010 and 2011. Then I crashed again hard in late 2012. That flare lasted over a year. I spent hundreds of dollars seeking relief from traditional Chinese medicine doctors; including treatments like bloodletting and cupping and a course of traditional Chinese medicine that made me vomit all the time.
It all made me worse.
Nothing could stop the fatigue and pain that was pounding away at my body in never-ending waves.
I’ve tried endless combinations of medications. Some made me gain weight, some made my hair fall out, some of them gave me horrible rashes, and some of them made my nails so soft and thin, it was a wonder I kept most of them.
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. Being chronically ill requires learning how to find a balance between surrendering your day and fighting for your day. I still haven’t figured this out yet, but I know my hard limits.
In June 2014, I started my worst flare to date. It started when I at an all-day outdoor event in Taiwan. I came down with a fever a few days later and my knees swelled badly. I didn’t leave my house for a month and wasn’t sure if I should fly home for summer vacation. I went, but it was a bad decision. By the time I boarded the plane, I could barely walk; it hurt to sit and it was torture to stand.
When I arrived in Canada after 30 hours of traveling, I was very ill. I didn’t even have the strength to sit up in the car with my parents on the ride home. I laid flat on the back seat the whole way home, trying not to cry from the pain.
I’ve been sick since July 2014. I am in pain constantly. It’s like a vise that is squeezing all my bones together. It’s a forest fire running wild throughout my body – everything burns.
I swim through an ocean of fatigue every day. Some days it’s so bad, I don’t get out of bed. Autoimmune fatigue is not like the fatigue you suffer from a late night out or when you’ve been up with the kids all night. Autoimmune fatigue is a different kind of fatigue, and if you’ve never had it, I hope you never will. It feels like you’re being dragged through concrete or like you’ve been slammed into something and you’re pinned there, struggling to get through it. There are days when I can barely pick up a water glass. The strength just floods out of my muscles, so I am always careful about what I carry and how long I carry it for.
Since July 2014, I’ve been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain Syndrome, but you’d never know it by looking at me.
I started seeing the top specialist on AS in Taiwan in May 2015. He was aggressive with his treatments and I’ve tried close to 14 new medications in the past year. I’ve had cortisone shots injected in my spine and ribs. The side effects from most of my meds were as bad as my disease symptoms. Once, I had an extreme reaction to a medication that almost killed me. I’ve since weaned myself off the worst of them and I’ve changed my diet and the types of products that I use personally and that we use in our home.
In early 2016, my rheumatologist had me branch out to other specialists under his supervision. I had great success with the insomnia specialist I was referred to. Thanks to him, I am sleeping better now. Being able to sleep has helped immensely with my battle against AS.
Overall, the health care system in Taiwan is good and I am fortunate to have access to medical care when I need it. I have also been able to seek assistance with pain management through Reiki treatments, massage, acupuncture, acupressure, and traditional Chinese methods such as cupping, scraping, and bloodletting. Most of these alternative therapies are still relatively cheap in Asia.
I have had some success with Reiki and acupressure. I cannot tolerate acupuncture or Chinese medicine.
I think I’m finally starting to come out of the flare that started in July 2014. It feels like my body has reached a point that it can function at. Perhaps 8 out of 10 with pain is my new normal. I am getting better at smiling through the pain. It still feels like I am walking on shards of glass all day, but I don’t have to work as hard to convince myself that it will be a good day.
I believe in sharing my story with others and in assisting with awareness campaigns for Ankylosing Spondylitis, Fibromyalgia, chronic pain and invisible illnesses to let others know that they are not alone. I am deeply involved with Walk Your AS Off and Walk AS One.
Illness is an isolating experience and it is easy to believe that no one else can be suffering the way you are suffering. The truth is that there are many of us out there and we are stronger when we work together for awareness. I hope our voices will be heard soon. It is my greatest wish that we find a cure for AS soon.
Thank you for allowing me to share my story, Cookie.