Friday, May 20, 2011
So, I have this debilitating, life-altering disease, at this point who really cares where I got it, right? The question is what now? I have to be honest, this is a really scary time, there is no cure here and very little information is available. I am moving downhill fast, the wheels are falling off this wagon like nobody’s business and I feel like I’m about to have a major 3 wagon pile-up. For the past few years the progression has been very slow. I won’t bore you with the details, but we are now to a point where my symptoms are multiplying daily, affecting not only my body, but my brain is unraveling as well.
We are seeing a LNB specialist in
Washington, DC who is the leading expert in the and a pioneer in this field, Dr. Joseph Jemsek. We feel that we are exactly where God wants us. I am in what they refer to as the “optimization phase.” Because the treatment is so grueling, my body must be in the best possible place to begin. Treatment consists of 6-18 months of IV infusion antibiotics; with the affects on my body being likened to those of chemo. Long term chances of recovery are good, with the hope being that I will return to 85% to 95% of my previous self. As the disease has no cure, I will be on maintenance treatments for the rest of my life. US
The other discouraging news is that Chronic LNB is not recognized by insurance companies and therefore the absolutely staggering cost of treatment is not covered. Our hearts have been overwhelmed by the love of friends and family as God has already begun to provide thru their generous gifts.
We are only beginning to understand the depths of the grace that God has lavishly poured out on our family as we are just so, so, so thankful that there is a treatment for what I have and that this disease is very rarely fatal. I know that there are many of you who have experienced the devastation of watching someone you love lose their battle with a terminal illness. My heart aches for you.
So, here’s the deal guys. I really truly believe what my daddy says, “Pain is the tool that God uses to carve out a container for joy." The amount of joy I have experienced in little everyday things this year is astounding. Finley’s amazing smile, the little attitude she has recently taken on, her contagious laughter as she swings on Papa’s swing and her curious little expressions and imagination as she plays and talks with her baby dolls, her insistence that she “escort” me to the bathroom – complete with her elbow out for me to hook my arm through. Robyn’s spunky personality, her gift of gymnastics, her silly laugh as we play Go Fish, her complete innocence as she does naked cartwheels on her way to the bathtub, and both of them fill my heart to the breaking point with their unbridled love for life as they unabashedly dance with delight. God is definitely cradling me in the palm of His hand. And I am clinging to His promises and provision every minute of every hour of every day. But for every scary thing that happens, every moment that I feel desperation, there are many, many, many more moments of overwhelming joy. To quote one of my favs, Katy Perry, “after a hurricane comes a rainbow.” And one more beloved place of solace for me that my momma had me memorize as a child, Isaiah 41:10, “Do not fear for I am with you, do not anxiously look about you for I am your God; I will strengthen you, I will help you, surely I will uphold you with My righteous right hand.”
In His arms is where I abide.