Sunday, 2 September 2012

I want to kick a wall in—a door down; to rip open a feather pillow (because that would be much more dramatic and satisfying than a cotton one); to scream, and cry, and scream some more. (Okay, so I’ve done the screaming and crying part already).  ONE to THREE MORE YEARS?! All I could hear was “three more years.” The hope of “one” was drowned out by my inability to process because even though I did not feel that I could go on one more day, I could have years of treatment and illness ahead of me. Years that feel wasted in bed, NOT living the life I had dreamed; spending the years I have waited my whole life to live: young adulthood, early marriage, pregnancy, and motherhood-- stuck in this ongoing nightmare that I just can’t seem to wake up out of.  

This time last year, we were making the appointment and arrangements to go down to the States. We made the trip, and came home to wait out test results and to try to find a doctor nearby who could give us the care we needed. Six weeks went by, and finally in November of 2011 I began oral antibiotics to begin chipping away at “the tip of the iceberg” of the many diseases that riddled my body.

 It wasn’t until March of this year that I was able to get the surgery needed to begin IV antibiotics. Six and a half months ago. Why does it feel so much longer than that? A lifetime has passed; we have moved out of our home, made a new one, and moved back again. I have been sicker than I have ever been in my life (but for the time when this all began with Meningitis), and I am SO weary of grasping at straws to create a positive enough update to keep someone from feeling worried, or sorry, or sad for me; or trying to reassure others that this is working, that I am getting better, and that it just takes time. This disease took up residence in my body three and a half years ago: it is not that easily reversed.

Most of the time, I am at peace with my illness; with the amount of time this is taking; with God’s plan for me in all of this. Even still, depression looms, a wet, sticky fog that coats anything and everything; and, when I get tired, or more sick from a Herx reaction, it makes itself all too painfully apparent. Those times I have to pray especially hard, and work especially hard at re-making my peace with this. Like all lessons God has for me, this cycle of lessons--weighed down by depression-- rolls around again and again, begging me to let go of the life I have constructed in my head; the life I have already let go of seven hundred times before.

A life of pregnancies, and fresh newborn babies; of breastfeeding and babywearing and feeling tired from working hard and caring for someone else. A life of taking care of my husband: dating him, kissing him (on the lips!!); not to mention being close enough to him to make more babies. I want a life where I can cook my own meals, and clean my own house, and drive myself places; one where I can attend play-dates and parties and family events. A life where I can give back to others in need.  

So, when I was at the end of my rope last Friday and asked my doctor how much longer this would take, I was in no place to accept the ballpark figure she had for me. I knew she was reluctant to say anything until we re-tested (in the next few weeks) to see what progress we've made; I’m sure she was reluctant altogether.  False hope is a risky dish to serve. What we do know is that since the treatment has been so effective at killing off the Lyme, it has removed the veil which Babesia was hiding behind. “And if you think Lyme disease is hard to treat...” Well, this is a really hard disease. This is where my increasing bone pain, and my breathlessness, and my crazy nightmares that I can’t tell are only dreams (even half a day after waking from them) are coming from; this is the culprit behind the seizures, and memory loss, and many other things that just aren’t improving yet. And depending on treatment, I still have one to three years left to go. 

The consolation? (I didn’t want to hear it, but maybe you do...) I won’t be on IV’s the whole time. I will be getting increasingly better (not better enough to live my life the way I want to though). The action plan: an increase in certain meds, and the introduction of an IV antibiotic that will attack the Babesia. I will Herx even harder than I have been. And I am scared. I am scared to be so sick I am mentally detached from my family. I already feel so detached from the outside world (even more so since we have come home, as I can’t push myself as hard as I could before).  I will be switching my anti-anxiety meds to ones that won't potentially cause depression as a side-effect, and in turn, will hopefully work together with my current anti-depressants to give me the boost I need.

I know I will get out of this dark place, because I know that God will give me the strength I need to keep going. He always does. And maybe this is too hard for some to read, and I am sorry, and that is okay. Depression is yucky, and scary, and so is this illness. But the dark times are a reality, too. So, I am not the poster-child for how to live gracefully and joyfully with multiple diseases. I am going to be okay with that, because I would rather be real; I would rather be an example of what this is really like than lie to all of you. Christ is still my light, and my strength—no matter how angry or hopeless or sad I get. And He can be for you too. You don’t have to be perfect for God to use you, or to hear you. I am as broken as broken can be, and if He would only use me, my life would be fulfilled.

Please pray with me for healing... for a miracle. For the strength and patience and joy that my family, my marriage, and that I need to weather this. That God would use this to grow me for His greater purposes and Glory. For everyone affected by this disgusting illness; and for those who lift me up and help me fight it. And for a cure.

“Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
He gives strength to the weary
    and increases the power of the weak.
 Even youths grow tired and weary,
    and young men stumble and fall;
   but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.
 
~Isaiah 40:28-31

"...God can still use you. He doesn't look down on you. He looks on you more. The weakest people have done the most for God, because in our weakness, He is strong. Don't ever be ashamed of your weakness. God wants you to see the potential of who you are going to be with His help. He wants to bring beauty from your ashes and heal your wounded heart. God wants to use you where you are, as you are. And He promises to carry you on the days you can't see ahead."
(Barrick, Linda. miracle for Jen, 2012.)

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’”
~James 4: 13-15


Blessings and love,

Kate


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