Ankylosing Spondylitis

Radio Interview on "The Truth About Living with an Invisible Illness"

Today my radio interview with Bill Feltner on "His People" was broadcast on the Pilgrim Radio Network across five states and online. It was such a joy to share my story on a new platform. I'm learning that public speaking is a place where my love for the gospel, hope in suffering, and desire for others to know that Hope can come out in an incredibly powerful and unique way. Writing will always be my first love, but speaking is certainly on the list. I'm now actively praying for more speaking opportunities to share my paradoxical story of how God can make suffering a place of joy. (And if you want to discuss a speaking opportunity you can fill out a request form here!)

Today's interview was on my Christianity Today article entitled, "The Truth About Living with an Invisible Illness." In the interview Bill asked questions about my "invisible" disease (Ankylosing Spondylitis), what life has been like since I got sick, how I've experienced stigma around my illness (but also beautiful community!), and what it's like to be a chronically ill graduate student. Here's the audio of the broadcast:

A New Season

Settling into our new home

Settling into our new home

(I wrote this last week as I was packing to move--hence the blog silence lately!)

On Friday my husband and I are moving into a downtown Denver apartment building to start our job of being a Cares Team. (You can learn more about the Cares Program here.) As with most big life changes, I'm excited, a teensy bit apprehensive, slightly nervous, and a bit stunned at what is happening. At the end of this month I will also be starting my new counseling internship at Authentic and True Counseling Center, where I will be starting my private counseling practice. In a whirlwind of events, I ended up needing to leave my original internship placement early. What could have been an incredibly frustrating circumstance led me to ann amazing opportunity. Essentially, at Authentic and True I will get to start my counseling practice a year early! (Which also means I will start being paid now, rather than upon graduation! Counseling folks know this is a remarkable blessing that is pretty much unheard of for master's level counseling students.) The plan is that I will be a part of Authentic and True's practice the entire time I am getting my counseling licensure hours. So, rather than 1) working an internship that's unpaid and will in no way lead to a job and 2) graduating and not having a direct way to start accruing clinical hours for licensure, I have a job, an amazing supervisor, and a stable place to start my clinical work! 

It honestly feels like the summer of blessings. In addition to the new apartment/job and internship, all my GI testing showed nearly nothing wrong! I don't have Ulcerative Colitis! At first this felt pretty discouraging--an odd reaction only those who have carried the burden of being undiagnosed or misdiagnosed understand. But in the end, I'm relieved. Having AS is enough for one lifetime. All the tests showed was some stomach inflammation and a small ulcer, probably caused by all of the anti-inflammatory meds I have to take.

So as I sit here in Starbucks, escaping the war-zone of my half-packed apartment, I'm reflecting on this new life season and the newfound sense of resolution it has brought. I, Katie Jo, with and despite my chronic disease, can live a good, fulfilling, productive, and exciting life. Foraying into the blogging world has made me aware of some amazing women who are living this chronic-illness life with so much intention and fierceness. Women like Aimee who has Rheumatoid Arthritis and regularly posts videos of her workouts. (Aimee, your "Stronger than RA" t-shirts strike a chord!) Or take Kenzie , a college student and nanny who has juvenile idiopathic arthritis, is studying to be a social worker and regularly blogs with honesty and wisdom beyond her years about her life and disease. My new circumstances mixed with inspiration of their determination and diligence are giving me a new, stronger, more certain desire and will to live my life as fully as possible. I want so deeply to not let AS win in my fight to live with joy and the intention to bless others. And, lately, I'm just not ok with AS keeping me on the couch instead of on my bike, walking my dogs, or working out. 

It's a new season, which means I have new opportunities to exercise agency in my life to live as I want--as a fierce, loving daughter of God who won't let disease keep her from loving others (or herself!).  And there, friends, we have the constant tension of chronic illness--of practicing acceptance while also pushing for fullness in life. Both are necessary, but without the tension, life becomes unbalanced. May we live the tension well!

#curearthritis (free bracelet!)

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Ok, I don't "love" to wear rubber bracelets--just not my kind of fashion statement. But I do love to advocate and raise awareness for autoimmune arthritis and Ankylosing Spondylitis! I put my bracelet around my water bottle, reminding me to drink as much as I can to take care of myself! (And to be brave in not keeping my disease a secret from the world...) May is Arthritis Awareness Month, and the Arthritis National Research Foundation is giving away free #curearthritis bracelets to celebrate and spread the word. Get yours here: http://www.curearthritis.org/free-cure-arthritis-bracelet/ And then Instagram that thing or tell a friend about what it means, cuz young people get arthritis too. (And I'm tired of hearing people say, "Oh, my grandma has arthritis too!" Not the same thing, people! Can I get an amen?!)

Turning over

Have you ever been afraid that you can't stand on your own? Last night I woke up in the middle of the night, needing the bathroom, and instead of easily getting up, I felt stuck in place. My joints had become so stiff in the hours of sleep that I wasn't sure I could even turn myself over to crawl out of bed. I'm used to pain in the middle of the night, but I've never had to even think about waking my spouse to help me out of bed. But last night I did. Luckily, with much struggle and some groaning, I was able to to get up by myself. But the stiffness was startling. "Go back to sleep. You will be ok," I whispered to myself. This morning I woke up to the same feeling, to stiff joints screaming in pain, taunting me to stay immobile. I'm not a morning person in general (Morning KJ is "grouchy KJ"--ask my husband!), but I will say waking up to intense pain is just a difficult way to start the day. Will I feel like this all day? Is my disease getting worse? When holding my coffee cup is painful and turning to set it on the side table elicits a deep groan, it's hard to not feel discouraged about the approaching hours and coming week. But in letting myself just "be," to simply sit and wait out the siren-screeching stiffness in my body, my mind and heart can find the space to be at peace. It's been a painful morning (like most of my mornings x10, dammnit!) but I feel peace. Why? I'm loved by God. No matter if I can make it to work today or do any school work, I am loved. Knowing I am loved by God gives me space to accept today's pain and its intrusion in my life. 

Beginnings

Perfection, in a Christian sense, means becoming mature enough to give ourselves to others.
— Kathleen Norris in Amazing Grace

Well, I'm starting a blog. I've wanted to do this for a long time, but I've also been afraid of doing this for long time. I feel compelled to write about my experience living with physical suffering, but it's a subject that is hard to understand, somewhat taboo, and incredibly personal. Will you understand my words? Will you judge me as someone who has let "sickness become her identity"? Will I be making public that which should remain private? These have been the questions I've worried over, keeping me from sharing my story. But, even with all the questions, I still feel compelled to write--for you, women and men suffering with painful diseases and your friends and loved ones who hurt with you, and for me. Writing is where I feel closest to God and most myself. It's a process where acceptance and peace meet over the painful realities of life. In order for me to suffer well, I need to write. I need to wrestle and search hard after the truth in my pain.

But as an idealist (my overly positive way of not describing myself as a perfectionist!) I love this process but can get stuck hiding my words until they reach some ridiculous level of perfection. And in order to really keep up a blog (while in graduate school, while living with a disease...), this just won't be possible! I think blogging will be a good practice in true perfection and freedom. Kathleen Norris describes perfection as being "able to make a gift of oneself." So instead of only reaching for the perfect syntax, adjectives, and quotes to describe my experience, I hope to focus on making a gift of myself to others. So here are my words, however imperfect they may be on any given day--my words, my soul, my bad and good experiences--for you and for me. My words are my offering, my attempt to hold onto truth while the waves of sickness crash around me. So, hurting friends, welcome. Welcome to a place of honesty and remembrance of the truth that

We have this as a sure and steadfast anchor of the soul, a hope...[that] if we have been united with him in a death like his, we shall certainly be united with him in a resurrection like his.
— Hebrews 6:19a & Romans 6:5, ESV