I figure I should write since I left you all last on such a low note. First off, I want to say thank-you for all of the prayers that guided me out of that deep, dark pit and carried me closer to God. My heart is still heavy, but I have come a long way since I got my updated prognosis, and I know that our united prayers are the reason for that.

I also want to thank you for the overwhelming response of support, love, and acceptance. It is a scary thing to bare your soul like that; to admit you are weaker than you wish you were; and yet, I was surrounded with nothing but encouragement for being open with you all. I could try to hide my emotions, from myself or all of you, but I keep hearing this truth that we need to “allow ourselves to feel”—no matter what it is we are going through. I don’t know about you, but I don’t want to feel angry, or depressed, or hopeless, or anything negative at all. But feeling those things, giving them a voice and then giving them to God, is going to make me a much healthier and lighter person in the end.

And now, for some updates! We were able to rent a wheelchair on the way home from our less-than-positive doctor’s appointment, and enjoy the Calgary Zoo-- as a family!! It was so nice to share in new experiences with Jack, firsthand. I even got to go on the merry-go-round with him (which was bittersweet, as I’d forgotten how badly Lyme patients can get motion sickness!) But, it was a gorgeous day, a wonderful time as a family, and just the distraction that I needed, even if my head was in the clouds a lot of the time.

Next up: you’re not going to believe this (well, maybe you will, but I sure didn’t!!) Our “full coverage” insurance might as well be “sixty percent coverage”, because unbeknownst to us, there is an annual cap on it; a $15,000 cap to be precise; a cap that we have exceeded. So for the remainder of the year, the bill is on us.

Some good news: we had to buy an oxygen concentrator earlier this summer, and as always, my diligent husband priced them out across the city. He found a company who quoted him well below what the rest did, and after hearing what a savings this quality brand offered over the phone, he asked them to send one our way. So, $850.00 (plus GST) later, our fancy-schmancy machine arrived. And two weeks after that, so did the bill. For almost THREE THOUSAND DOLLARS. Matt got on the phone right away to reconcile the discrepancy. This couldn’t be our bill. We were quoted less than nine hundred dollars. This was thousands of dollars. The mistake? The machine cost $2850.00, and since we only got a verbal quote, we mustn’t have heard the “twenty” before the “eight hundred and fifty dollars.” You are probably wondering where the good news is, and if I have gone crazy (I have, by the way, but the story does get better).

So, the woman put Matt on hold, and went back to listen to the “this call may be recorded for quality control” tape, and must have found out that the saleswoman really did say it so fast and/or quietly that it was obvious how he'd misheard her! But instead of pinning the blame on Matt for not hearing it right, or not requesting a hardcopy of the quote, she came back and said, “I am so sorry for the wait, sir. We understand that is quite a large difference, and as such, we will alter your bill immediately.” BAM. Just like that! Two THOUSAND dollars off our bill in a matter in minutes. Their mistake or not, they most certainly did not have to honour a verbal contract. It was nothing short of a miracle to so quickly and kindly have a huge lump sum just erased from our bill! God provides. All the time. Emotionally, and financially; and I am never ceased to be amazed by it.

And now, for some fantastic news!! Last night, for the first time since January (when I had to come home halfway through our anniversary dinner), my husband and I got to go on a date!!! Armed with a gift card we received last Christmas--and a desperate prayer on my part-- we attempted dinner, and after that: attended the second theatre movie we’d seen since Jack was born. And I would have to say, it was a success!! I didn’t feel well, that is true, but I was able to push through and enjoy myself. The restaurant and theatre were both much too loud, and my social skills less than refined (which came as a shock to me...who knew I would have difficulty making small talk with our waitress?) But as alien as I felt, it was amazing to spend time with Matt as husband and wife, and not caregiver and patient. To get dressed up for him; to see him as the handsome man I married; the man I love spending time with, was something my heart needed so badly. I didn’t forget for a moment I was sick (I was in too much pain for that!) but this was one of those times that pushing myself, while hard on my body, did wonders for my mental health.

So, while I am still longing for a “normal” (or should I say healthy) life, I am starting to find my balance again. I am able to look back and feel blessed with both the pit stops we made (to and from our appointment), as well as the time spent with our "family" down South, and not just focus on the disappointment of our doctor’s visit. I am trying to let go of the expectations I have for myself and just allow myself to be sick, and weak, and incapable when I need to (or as healthy people would say, to “take care of myself”). Please, don’t stop praying for me. I need nothing short of a miracle, and I would be so grateful if you would continue to storm heaven with me. 

My prayers are with each of you.

Blessings and peace,

Kate

"But in their distress they turned to the LORD, the God of Israel, 

and sought Him, and He was

found by them."

2 Chronicles 15:4

"When my spirit grows faint within me, it is you who know my way."

Psalm 142:3a

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let

your hearts be troubled and do not be afraid."

John 14:27

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