Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
By Kathleen Barth
Tuesday, May 7, 2019
I was born in England in 1964 as part of a US Military family that took us to various parts of the world. And in 1982 we traveled to Hawaii where I met my husband Joe. Today we have 4 adult children, 2 daughter in laws, 1 son in law and 6 wonderful grandchildren. Being active has always been a part of my life. Then life suddenly changed in September 2018 when I was diagnosed with Ankylosing Spondylitis.
Ankylosing Spondylitis What the heck is that? I can’t even say it. (Pronounced ank-kih-low-sing spon-dill-eye-tiss)
I learned very quickly AS is a rheumatic disease that primarily affects the spine. It also involves other parts of the body such as the eyes, jaw, neck, shoulders, chest, ribs, wrists, fingers, knees, feet, toes and heels; pretty much from head to toe and the worse part; there is no cure.
I have always been very athletic. In my younger years I was a championship runner and swimmer. Although I don’t compete in events, I have carried that lifestyle into my adulthood. I remember in my teens having frequent back pain; I just brushed it off because athletes have aches and pains right? Those aches and pains have followed me through life. In 1997 I had my first back surgery and two more followed within a few years. All involving the lower back.
I put aside high-risk sports to protect my spine. I wanted to play ice hockey. I became passionate about other things like long distance biking and hiking around my home in Alaska. The long summer days allow for a lot of time to hike the majestic mountains. Because of my back problems, my hiking was always day trips; in Alaska that often meant 12 or more hours. The weight of an overnight backpack was more than I could handle. I also became very passionate about photography. I would spend day after day hiking the mountains or the parks around the area to follow the wildlife, primarily the moose and bears just to get that one perfect picture. A few years ago I developed severe pain in the elbows. At the time we believed it was simple ‘Tennis Elbow’. The pain and discomfort have caused me to put down the cameras. Once again the weight of the camera was more than I can handle.
As time went by, things started to change and my activity level was dropping. Then in April thru July of 2017 I became very sick and finally went to the doctor and was treated for pneumonia. Things physically got worse. It was something I could not ignore. I was afraid. My whole body hurt, literally from head to toe. The intense pressure and stiffness on my chest and ribs made me think I might be having a heart attack. The pain is often intense and the fatigue is exhausting. Just getting out of bed and doing small daily task was, and still can be, challenging. Simple things like getting dressed, going up and down stairs, getting in and out of the car, carrying a laundry basket, lifting blankets to make the bed, are just a few things that are now part of my daily challenges.
I was feeling very isolated and afraid in my pain. I have always been proactive in my health care and was determined to get answers in hopes to get my life back. My nurse practitioner, Jyll Green, was able to consult with a Rheumatologist and after a series of thorough physical exams, blood test and even some MRI’S, I was diagnosed with AS.
Now looking back at the aches and pain and even the inability to handle the weight of my cameras, we believe that I have been dealing with AS for the majority of my life. It was the fact that I have always taken good care of my self and stayed very active that I didn’t suffer more severely a long time ago. It is a blessing to finally have a diagnosis. It has empowered me to work towards a plan to have the best life with AS.
This life is not easy. Every day is a struggle. Some days I feel the real me is being taken over by my pain and fatigue. I am not the same person who could do what I used to. I am learning how to make peace with that. I don’t like it. Your goals, hobbies, dreams and priorities are forced to take a different turn. You have to get up every morning and tell yourself “I can do this” I am grateful for the little things and stress less about the big things. I give myself more grace. I pray for the strength to endure it, the grace to benefit from it and if I can encourage others with what I am going through then something good has come out of this horrible disease. No matter what I go through I will fight for my best life. I have a history of VICTORY!
I refuse to let AS take over my life. I now have to use the gym and pool to supplement my activities. I must keep moving. I set a goal to do the women’s Alaska Gold Nugget Triathlon May 19, 2019. The athletic goals are not about winning anymore, which is going to be difficult for me as I am competitive. My goal is to encourage others to keep moving, find new passions and pursue them at a level that is good for them and graciously accept a helping hand when needed.
AS like all major illnesses require a change in lifestyle. You have to be responsible for your health. Work with you health care providers, learn as much as possible about AS, make those changes. They include physical activity and what you eat. There are a lot of bad foods out there. Learn what is best for you. And most importantly you need the help and support of family and friends. I want to thank my husband Joe for being my biggest cheerleader and best friend. I want to thank my family for their love, encouragement and support.
UPDATE: The May 2019 Alaska Gold Nugget Triathlon was a success!
Crossing the finish line of the Gold Nugget Triathlon was a monumental milestone for me—not just physically but mentally. Since diagnosis, my life has taken a complete 180. I could no longer spend my energy on doing the things I love—hiking, biking, even photography—but now I needed to spend my energy on just getting out of bed some mornings. After many months on working to overcome my diagnosis along with much thought and prayer, I made the decision to sign up for the Women's Gold Nugget Triathlon. I knew this would be challenging, I knew that this would push me to my limits, and I knew that there would be days that I would want to give up. I started with a goal of completing the race under 2:00:00, and I am overjoyed to say that I finished at 1:59:12. I could not have done it without love and support of my husband, Joe, and the cheers from my family, along the way and at the finish line. I also want to thank the Spondylitis Association of America for allowing me to share my story. If there is anyone reading this right now, who feels like they are in a constant battle with this disease, know that you are not alone and you can overcome this.
- Kathleen and Joseph Barth
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