AS awareness month is coming up in May, so I’m finally publicly sharing a bit about my journey with AS, information about what AS is, and about my unexpected, delightful surprise five years post-diagnosis.
I accomplished a very exciting milestone last week! A milestone I never thought I would achieve. What was the milestone? I walked five miles. For many, it’s a simple milestone (I mean, I should easily be able to walk five miles, right?). For many others, it’s not a very significant milestone (after all, five miles isn’t impressive). For me, it was incredible. The thing about milestones is that in order to truly appreciate the achievement, I think you’ve really got to understand the full journey to the milestone.
In 2019, two significant events happened in my life, all within 24 hours. The General Conference of the United Methodist Church happened. It was rough, it was heartbreaking, it left me questioning lots of things. The very next morning, I received a life-changing diagnosis. Everything in my world turned upside down. Actually, much of my life turned upside down in December 2018, which is when I first started having symptoms. While the diagnosis was difficult, I was thankful to have a name for the disease (Ankylosing Spondylitis or AS). https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808 I was terrified to find out there was no cure and that it would progressively worsen over time. AS is referred to as an invisible disease because no one can look at you and tell you have it and it takes quite a long time for doctors to finally diagnose it. I immediately started medication to slow down the progression of the disease and relieve some of the symptoms. The medications had the possibility of severe side effects. It turned out that the first medication was not only ineffective for me, but I was allergic to it. So, back to the drawing board. (Keep in mind, all this was happening at the same time as the stress and aftermath from General Conference.)
I was told that the disease would eventually take away my mobility (in addition to causing other medical complications), so finding a medication to slow the progression was absolutely critical. I was already struggling with sitting, laying down, walking, and/or standing for any length of time. I purchased the needed items to assist me (a chair for the shower, heating pads for my back when sitting, a new chair with better support for home and office).
Eventually, my doctor found a medication combination that seemed to alleviate much of the pain. Once the inflammation had reduced a bit, I was able to slowly increase the length of time that I could stand, sit, lay down, and walk. I started physical therapy (including use of a super cool underwater treadmill), I started counseling to come to terms with what will come along with this diagnosis in the future, and I started to reduce stress in as many areas of my life as possible.
We all know that COVID was rough for everyone, and yet in some ways it was a blessing for me. It forced the world around me to slow down, so that I could let myself slow down and not feel like I had to keep up with everything around me. I still worked like crazy, but at my own pace and on my own schedule.
Fast forward through all the physical therapy, 5 years of medications, new ways of taking care of myself, and building a new plan with all of my doctors and specialists, and I now finally find myself in the incredible place of better health. My progress has been an unexpected, delightful surprise! I still have (and will continue to have) rough days and I still need significant and frequent times of rest and recovery, but overall, I’m functioning really well!
So, let me yell it a little louder for everyone to hear: Last Saturday, I walked 5 miles!!! 5 whole miles!!! And last Sunday, I walked another 2 miles!!!
Me! The girl who 5 years ago couldn’t sit, stand, lay down, or walk for more than 10 minutes at a time, walked 5 miles! When I received my diagnosis in 2019, I NEVER thought it would be possible for me to do that again. What an unexpected, delightful surprise!
And now, here we are approaching another General Conference. I don’t know if it’s realistic to hope that 5 years later we will see a drastic change in the outcome of this one, but I feel like I’ve already lived through one unexpected, delightful surprise, so I’m sure praying for another one!
I don’t know what you may be struggling with or how long you may have been struggling. I don’t know if there are positive days ahead or more days full of challenges (or both). I do know that trusting God with my fears, concerns, devastations, and anxieties sure has helped to give me lighter shoulders and a lighter heart and mind, which have helped me to see a glimpse of better health for now. I anticipate challenging days ahead and I’ve done what I can do to prepare for those days. For now, I continue to trust that God is in this with me every step of the way and I celebrate the unexpected, delightful surprises along the way.
Thanks for reading my AS story and for observing AS awareness month with me this May.
"Cast all your anxiety on him because he cares for you." -1 Peter 5:7
