Friday, June 10, 2011

So...Now What?

I have tried to write this post several times this week. All I could do was stare at the title and wonder. In fact, the question alone is a bit daunting. It has been a week since my diagnosis and the whole wrapping my head around it thing hasn't been the easiest.

I don't think that ignorance is bliss. In fact, I think that knowledge is power. It drives out fear, gives us choices and helps us move forward. That being said, I'm learning to filter what I put in my head. I don't need to know everything there is to know about AS - at least not right now. I went on a few online AS support groups. A few days (and a couple meltdowns) later, I realized that it's just too much too soon. The disease can be horrific. Reading about people's pain, deformities, side effects from medication, and overall suffering sent me into a cloud of hopelessness and fear. I broke down in tears doing laundry, in the produce section of Safeway, taking a shower, checking the mail. It wasn't pretty. I had terrifying visions of my future. I may as well just shut down the blog, curl up into a ball and just quit. Okay, well, that's not really an option but the thought crossed my mind. That's what happens when you're paralyzed by fear - nothing good can come from it. So, I decided: NO MORE GOOGLING. Not now anyway. The only information I need is that which will make me stronger and give me hope. The "what ifs" are endless. Endless and useless. I can't think that way.

So now what? Well, a 5-step plan is long overdue so here goes:

1. Exercise. Exercise. Exercise: Okay, so this won't look quite like it would have looked a year or two ago but then again, nothing does. Exercise is key in treating AS. It helps maintain posture, flexibility, and lessens pain. I'll be swimming, walking and stretching my little heart out.

2. Medication: Let's not talk about the risks and possible side effects right now. Thinking about it makes me want to vomit. Today I told my doctor that the whole thing freaks me out and he nodded his head (to validate my feelings) then told me it's "safer than it sounds" and a lot better than what I've been on the last 3 months. Somehow, safer than "THIS MEDICINE MAY INCREASE THE RISK OF DEVELOPING BLOOD CANCER" doesn't make me feel much better, especially as I'm injecting it into my thigh. Well, it's either a risk or letting my spine fuse together. Ugh. Oh wait, we're not supposed to be talking about this right now. Okay, anyway, the crazier part is that this medicine costs $600 a SHOT!!! That's $2400 a MONTH!!! What the heck??? Fortunately I have good insurance so I only pay $10/shot out of pocket. The whole thing is absurd. I mean, obviously if I didn't have insurance I just wouldn't take the medicine. Oh boy, this could move into a very political discussion. Let's move on...

3. Eating Clean and Green: I love what I feed my body. I love shooting down some green juice and knowing that my cells are having a little party. I love that I'm helping my poor little immune system that has been taking a beating. There's a hot debate on whether diet affects symptoms of AS and other chronic disease. I don't care what the debate is. The bottom line is that we either nourish or tax our bodies with the food we eat. I choose to nourish and this blog will be exploding with yummy recipes for all. I know, I know, you can't wait. Oh, but I have a confesssion. I'm no food saint. I ate an entire carton of mint chocolate chip ice cream this week (yup, the whole thing all by myself). It was delicious and I enjoyed every bite of it.

4. Hope: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11. I've read this verse a thousand times, but it has never meant more to me than it does right now. Hope is a powerful thing. I believe in God's promises and I am writing this one on my heart.

5. Live: That's right, you heard me. Step 5 is to L. I. V. E. Live. I am going to dance (as soon as my body lets me), sing (at the top of my lungs), love (because why else are we here?), and shake things up a little. Yup, all those cliches sound cheesy until you're living it. You know the ones: "They call today the present because it really is a gift." Hallmark knows what's going on. I am thankful to be here and until there's a cure or a miracle I'm going make this thing work for me (and hopefully for you). Call me crazy but I believe something fantastic is on the horizon.

This post wasn't so hard afterall. In fact, I feel better already. Thank you. I guess I needed my week of roller coaster emotions to be here right now. What you see is what you get. The pain is real. The fear is real. But so is the joy, the hope and the love.

Be blessed,


  1. Dearest Kim,
    I have always loved your zest for life. Your tenacity. Your passion to champion for all who are being mistreated. Your deep love for your family and friends. Your heart for the lost in this world. Your love for and trust in God.
    You are a warrior. The raw open honesty with which you chronicle your journey is a gift. Few that read will truly know what your are going through but I know that they will find strength in your words. Strength that will help them with their own journey.
    My favorite May Day staff hula will always be, Testify by Avalon. I can still see the smile on your face as you danced. What an incredible joy to share Jesus alongside you at our school.

    For as long as I shall live, I will testify to love
    I'll be a witness in the silences when words are not enough
    With every breath I take I will give thanks to God above
    For as long as I shall live, I will testify to love...

    You are a warrior. The chosen generation. A child of the Most High.
    I pray for clear vision as you plan your attack on AS.
    Kick it.
    Gentle hugs,

  2. Alex,

    Thank you for your words of life and encouragement (I love the word tenacity, by the way).
    Ah yes, I have such good memories of all our dances. Testify was a special one. Didn't we sing it too? I picture being in the cafe and singing on the stage with you?? Good times with great people.

    Gentle hugs back,

  3. Hi Kim,
    It's always amazes me to see God's way of speaking to us. What you wrote echos what I get to share at church this weekend. It's as if we were on same wave length of thoughts. I was asking God to confirm what He wanted me to share in Reese's story, and your blog is the confirmation...almost verbatim. Wow. Although our journey's are very different, I'm so glad that in the midst of yours, you also find your comfort, peace and future in God's hands. Praying for you and your family.

    Jessica Sakauye

  4. great post Kim! I love your confession on the ice cream! And I cracked up at the "Hallmark knows what's going on" You are hilarious!!!! I have always been a Hallmark fan myself. I am all for the cheese and mushy stuff. It gets me through life. My husband tells me I live in lala land but that is how I stay positive.

    see you soon:) Sara

  5. Love it... I hear your exact tone as I read these words and I LOVE it!!!

  6. you got me teary! i love the way you fight! i love your spirit and i love your strong mind!!!!
    thinking of you! and again, thanks for sharing your heart! xoxoxo

  7. Jess: I would love to hear what you're going to share this weekend. Reese's story is incredible and I'm so happy she is growing big, strong and healthy. What a beautiful miracle she is! xoxo

    Sara: Lala land is definitely underrated :)

    Ash: I know, me and my tones. Glad you can still love it after all these years.

    Mich: Like you said, us mamas are strong. Look out world!! :)

  8. Kim,
    Since I haven't heard from you, I found your blogs and just caught up! You are the amazing! I truly wish I could be there with you but I KNOW you are strong. I have always known. You can and will do whatever it takes. If you need anything, just say the word!
    Love you!

  9. I truly believe something fantastic is on the horizon! Not sure if you are already, but consider the gluten free diet. Changed my wifes life! You will overcome, I know it.

  10. I just love your posts, Kim!

    Deuteronomy 31:8 is one of my favorite verses since diagnosis. Jeremiah 29:11 has been my favorite all my life. It was my grandmother's favorite too.

    Have you read One Thousand Gifts by Ann Voskamp? I think you would really love her book.