Friday, June 17, 2011

A New Fire

The tears have dried up, my mind is clear and there's a new fire in my belly.

Yesterday I gave myself my Enbrel shot for the first time.  I was so nervous. Physically, it didn't hurt as much as I thought it would. Mentally, it was just what I expected.   I've had a real unsettled feeling the last 2 weeks.  I mean you're told you have a chronic disease with no cure and the long term treatment has pretty scary side effects - you're given a 5 page brochure and sent along your way.  Don't get me wrong, my doctor has been wonderful.  I just have so many questions.  I feel like there should be some kind of class that teaches you the ins and outs of the disease, a place where you can ask your millions of questions and actually get  some concrete answers. 

Here's where I stand.  I have a medical diagnosis:  a chronic autoimmune disease.  Treatment entails, among other things, shooting myself with a powerful immune suppressing TNF-alpha blocker every week.  While the medicine has definitely improved my pain and overall ability to move and function, it can lead to intestinal bleeding, kidney failure, depression, osteoporosis and cancer, to name just a few.  Oh, and it gives me a splitting headache for 3 days after each shot.  This just cannot be the end of the story.  

Maybe I'm the overzealous, idealistic, newly diagnosed, freshman of the class.  Maybe.  And that's okay (it wouldn't be the first).  I have incredible respect for the medical community and doctors (most of them).  I have been fortunate to have had wonderful, caring and smart doctors (with a few exceptions) throughout this whole process.  At the end of the day, I know I'm just a patient - with a chart (a really, really fat chart).  Now that there's a diagnosis their job is to prescribe the most effective treatment to help me live the most "normal" life.  And I guess my job is to follow along because they are the doctors and they know best.  I have no doubt that they are looking out for my best interest and that they truly want me to have the best quality of life possible.  That being said, we just might differ on our definitions of "my best interest" and "quality of life".  Ultimately, the pain is mine, the risks are mine and the serious, sometimes fatal, effects are mine and mine alone.  So where does that leave me?  The answer is crystal clear.  I need to seek out alternatives.  I need to look deeper, at what the cause of all of this might be.  I need to turn over every stone, consider all the possibilities, and change whatever I need to change to allow my body to heal. No, I'm not going to do an Eat, Pray, Love journey around the world to find the cure for AS (well, at least not yet).  But I am going to look for some doctors that are interested in the why.  Why the inflammation?  Why the pain?  Why now?  These answers are important to me and important for healing.

The day after I was discharged from the hospital to wait for my biopsy results I went to church.  I was hoping the message was going to be entitled "God Heals. All the time. Everything is going to be okay."  It wasn't.  In fact, I can't say I remember a single word of the pastor's message that morning, except for a story that spoke to me then and still speaks to me today.  He talked about the way we often pray for "traveling mercies".  He said that instead of praying "Oh Lord, please protect us as we travel and bring us safely to our destination blah, blah, blah" we should be praying "Lord, please take us on an incredible adventure.  I pray we meet new people, see amazing things and experience the world and each other in awesome new ways.  And Lord, we know you are our protector and that you are always with us."   I love it.  I don't want to miss out on anything God has for me during this season.  I don't want to just safely arrive at my destination for arrival's sake.  I want to see with new vision, feel with deeper compassion, love extravagantly, live intentionally.   And there, somewhere along the way, there will be healing.  I just know it.


  1. You are just as beautiful in mind, body, and spirit as I remember you being in college. Thank you for continuing to bless my life with your friendship and wisdom. I love you!

  2. Kim, you are an inspiration. Keep believing and trusting in Him. You have been in my prayers. -Rebecca

  3. No matter what happens to our bodies in this lifetime, there is a forever filled with perfect healing, and that is what gets me through the worst times, that and my beautiful family.