Hi there! If you’re reading this post, you are likely a family member or friend of my sister or myself. Thanks for reading! I hardly know where to begin…the first post is definitely the most awkward!
I am starting this blog for several reasons–to raise awareness of a disease that my sister has recently been diagnosed with, to raise money for the Spondylitis Association of America (SAA) and their efforts to fight the disease and help sufferers, and to chronicle my journey toward my first marathon (again, hoping that people will enjoy the blog and decide to follow it, find out more about the disease and hopefully consider making a charity bet on my race to support SAA).
I should start with some facts, I suppose. I am a soon-to-be 40-year old (very soon, like, within days soon) wife and mom of two boys and one rambunctious dog. I am also the lucky sister of Tiffany. Am I a runner? I don’t know…I guess. I’ve run for about 10 years now with varied degrees of commitment and success. I have a few half-marathons under my belt, a 10k, a 5k, and a lot of untallied miles. I have a pile of old running shoes in my closet, more moisture-wicking gear than you could imagine, custom orthotics and my own wing at the podiatrist’s office for my plantar fasciitis. I know what a fartlek means, I have firm opinions on running etiquette, and I am completely addicted to whatever endorphins start flying around in my head around the mile 3-8 stretch on a long run. Does that make me a “runner”? I sure as hell hope so, because I’m about to tackle the marathon distance, and I’m scared!
I have always sworn I would never run the ol’ 26.2. I am a cautious gal with high arches and gnarly bone spurs. I put on the sunscreen, make sure my tunes aren’t turned up too loud, obsess over clothing and temperature, stretch like a beast and head out for my medium-distance runs. It’s safe. It’s just how I roll…and anything more than that is outside of my bubble.
Train for 26.2? Never! Run more than two days in a row? Can’t be good for the body. But now here I am, preparing to start the training (like thousands of others). Why?
Of course because of my sister. Because I can’t help her. Because I can run, stretch, lift weights, do whatever I want to today–and she can’t.
My sister is 42. Approximately a year ago, after many years of health issues, she was diagnosed with Ankylosing Spondylitis (AS). AS is a form of autoimmune arthritis that causes inflammation of the spinal joints and other joints in the body. It can lead to inflammation, pain and stiffness in many areas of the body. Shoulders, neck, hips, eyes, feet–all small joints can be affected, and even the heart and lungs in some cases.
The hallmark for most patients (and the first major problem for my sister) is involvement of the sacroiliac (SI) joints, where the spine meets the pelvis. My sister dealt with this unresolved pain for many years before other symptoms started appearing. As the inflammation continues unabated, bone growth occurs at the site of inflammation (within the joint), eventually causing new bone formation and fusion of the spine. This can occur in the neck vertebrae as well.
There is no cure for AS. It’s difficult to diagnose, because the disease and its effects on the SI joints usually progress for 7-10 years before the damage becomes visible on conventional x-rays. Meanwhile, the damage IS occurring, and it cannot be reversed.
I will have much more information in future posts about this disease, about my sister’s history with it and her current treatment plan. For now, I’ve included a few links to websites with information about AS, and I plan to add more. I know my sister is embarrassed in a way to share her story…she doesn’t want a pity party–but she also doesn’t want one person to go through the physical and mental pain she has gone through in the past several years. People with this disease “look” normal. They may start to feel like they’re crazy, because the doctors can’t seem to find anything seriously wrong based on x-rays. My sister has endured serious pain and continues to, as she is not yet experiencing relief from the drugs they have tried, yet she has spent several years doubting herself and wondering if she’s a baby for complaining about her pain.
I want to support my sister, and I want to provide information that might be able to help someone down the road who has the beginning symptoms of this disease and doesn’t know what’s wrong. I have spent years running, and I have always been grateful for my health and my ability to step outside, turn my face to the sun, breathe in the fresh air and run a few miles. Now I feel that way ten times over, and I hope that I can raise awareness and money for the fight against AS with this blog and my planned run. Thanks for reading…more to come!