Well I know I haven’t written an update in long time and the longer I leave it, the more I forget! Reviewing this, it is obvious I am at no shortage for words, so hopefully I’ve included all the juicy details!  (If you finish reading this, and you’re bored, thinking, “that was considered ‘juicy’??” please assume it’s because I left something out!)

 It has been 3 1/2 weeks since my PICC line was inserted, and it has finally reached a point where it isn’t constantly hurting and/or bleeding every time I move. I am glad to have passed that stage; it was upsetting, and not at all what I expected. I was quite disturbed by how foreign it looked and felt; how painful; and, how painfully obvious it was that I am sick. Up until a few weeks ago, there had been nothing really physically distinguishing me as ill. In fact, if I mustered up the strength to get all dolled- up, those who knew of my illness would likely think I was on the road to recovery. And while I suppose an arm is easy enough to hide, I still feel “marked” somehow. Even so, I am grateful the skin around this alien device has almost healed, and it is slowing becoming a member of my body. I would like to say it is an unnoticed member, but the plastic and layers upon layers of tape bandages, along with the crawl-out of-your-skin itchy feeling,  and being unable to lift more than ten pounds are all near-constant reminders of its presence.

 I was sent the prettiest package of armbands from my dear friend Ruth (pictures in the last post). They were custom knit by a fellow Lyme patient, softer and more comfortable (not to mention, attractive) than the burn wraps they send you home with from the hospital, and I am living in them!! I am sure they are a bit curious looking despite how attractive they are; so, if you see someone on the street with a knit tube worn around their bicep, they either have a PICC line underneath, or we have started a trend!

I started IV antibiotics the day after surgery, which is partly why I haven’t written much of anything since. I have been sicker than ever: my pain is worse (meds accordingly increased, which helps a little), I've been sleeping almost all day, waking only to eat and go to the bathroom, and then back to sleep until the evening-time. I still have the drive to stay up later than I should, but overall I was clocking in around 17 hours a day of sleep per day. I get hooked up to my IV meds 2 x's a day for 2 hours each time. On Tuesdays and Fridays I get extra fluids, so I am hooked up for three, 2 hour, intervals. The unfortunate thing is, in a carpeted home with five sets of stairs, it is really difficult to get around (not that I feel well enough to, anyhow!)  I have tried to do other things while the machine runs, but it gets angry and beeps at me for kinking the line by bending my elbow! I have learned to sleep with it running, so it isn't terribly bad. Apparently I am “lucky,” and faring better than most; although, the second month is foreseen to be worse as the bacteria will have come out of hiding and there will be more to kill off.

The one day I don’t get to sleep in is Tuesdays. I have to leave the house once a week to get my dressing changed, so that has become not only “dressing change day”, but also “coffee day” too. (On a side note, it is amazing how effective coffee is when you only drink it occasionally. It is by far my favourite drug “sometimes” food in our diet). It is a little crazy how important it is to keep my PICC line sterile so it doesn’t get infected, although understandably so; if it does, it will have to be removed and reinserted only after the infection clears up. So every Tuesday, Matt wheels me into the hospital to have my dressing changed, and the bandage that I just comfortably wore into the crease of my arm gets removed; everything underneath gets sterilized and swapped out (except for the PICC tubing itself). I am really nervous about infection and having to get a new line in/have my treatment set back that I am glad to do it, really. And the nurses there are so kind; they make it as pleasant an experience as possible!

Part of my paranoia stems from the day of my surgery, when a woman was in getting her PICC line replaced for that very reason; somehow, it had gotten infected, and had to be removed and replaced.  We sat there, waiting, and I was feeling surprisingly calm. Our lovely neighbour-friends drove us and were there to reassure me, as they had been down this road before. The husband of the Lyme patient in the operating room was a friend of our neighbours as well, and he sat in the waiting area, tapping his foot, waiting beyond what the surgeon had said would take “two minutes”. The time for my appointment came and went, and some speculation was starting to surface within the small talk being made. Sure enough, a nurse came out, pulled the husband aside, and said (audibly), “she’s having another one of her seizures; we can’t finish today.” So they wheeled her out, right past me, having the most violent seizure I've ever seen! So much for me not worrying! Less than a moment later, the same nurse came out: “Mrs. Thiel? We’re ready for you”. I had brought my rosary to pray in the event my nerves did get the best of me, but (as my Grandma would say) I was scared “spitless”; so badly that I couldn’t remember the words to the prayers. So instead, I pulled out a tiny cross, a gift that had often been held by stronger hands than mine, and clung to it for dear life. My procedure took longer than the estimated two minutes, but thankfully all went well, and continues to so far!

We have had some visitors here; our friends from down the street, of course, and the parents of a good friend back in Edmonton. The activity hasn’t been to the same amount or type as it was back home though. I am lonely, and I miss everyone terribly. So far, time is dragging by. Matt left for work yesterday evening, bringing his 3 months of stress leave to an end. I was so sad to see him go! On the bright side: my in-laws are here!! And I couldn’t be more grateful that they are. With them, they brought a sense of home; a lot of comfort, help, and joy (along with many items we forgot back in Edmonton, and presents for Jack!) And Jack was skipping and dancing and waving his arms in excitement to see “Papa!” (That is right, it is spoken each and every time with an exclamation mark—that boy sure loves his Grandfathers!)

Yesterday morning we had our 6 week check-up with Dr. Ryser . We drove the 5 minutes to our Doctor’s office here, and made a conference call to Kansas City. Everything is going better than planned so far; I have been feeling worse than ever in all the right ways, which means it’s working! Also, the Babesia they figured I had back in September (but was hiding behind the Lyme) has started to surface (in the form of horrendous bone pain and chest pain), which is also “exciting,” because we can work on treating that too. Unfortunately, both doctors said they want us here for as long as my Herxes are strong (I wish I knew the timeline for that!) It’s understandable, as it’s the safest thing to do, but boy do I want to come home already! When asked by Dr. Ryser how our Doctor thought we were doing, she said, “Just brilliant. They are a remarkable young couple, and incredibly brave. I can’t say I know of another 26 year old who would have the courage to take on what they have.” God bless her! What a kind and encouraging heart. Finally, everything I need in a doctor and more.

The past two days have been much better; previously, I couldn’t get out of bed; one day—I couldn’t even walk! I have been up and around the house a bit which is a huge improvement, sleeping less, and steadying myself for what’s to come. And with that, I am off to bed. I may not be sleeping 17 hours a day, but I still need more than half of that to keep this body fighting!

Prayers and love for all of you back home.

Kate

"For you will forget your suffering, 

recalling it only as waters that have flowed by. 

 Your life will be brighter than noonday; 

its darkness will be like the morning. 

 You will be confident, because there is hope. 

You will look carefully about and lie down in safety.

  You will lie down without fear, 

and many will seek your favor."

Job 11:16-19

A Picture is Worth a Thousand Words...

WARNING: if you are really squeamish-- you may want to skip this post! A brief photo journal of the past few days (with hopefully enough space at the beginning that you didn't get tricked into seeing something you didn't want to see!)

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Blessings,

Kate

"Blessed is the man who trusts in the LORD, whose trust is the LORD.  He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit."  The heart is deceitful above all things, and desperately corrupt;  who can understand it?  "I the LORD search the mind and try the heart, to give to every man according to his ways, according to the fruit of his doings." 

Jeremiah 17: 7-10 (Emphasis added)

Tomorrow, tomorrow...

Well, we had the consult with the surgeon last Wednesday. And despite his many questions, ("How do you think you got Lyme disease? When did the symptoms present? When did you get diagnosed?Who diagnosed you? What kind of symptoms do you have?"), he really was rather nice. And a lot younger than both Matt and I were expecting; his name led to a mental image of a dignified middle-aged man with grey hair, not someone who could guest star as "the Todd's" college roommate on Scrubs.  I know the Holy Spirit was there with me, because for once, I didn't feel offended or flustered (which is hard after being bombarded for years by doctors), and gave just the right number of passable answers mixed with enough incoherence to validate the authenticity of my case. He arranged with his nurse to schedule us in, and we were off.


 And while I am starting to feel a little lonely for the people back home (especially my Mom, since I would have seen her by now), I am settled. The house is unpacked, our nanny is better than I could've hoped for, Matt is happier as a result of less work on his plate, and I am feeling nearer than ever to God and His unwavering strength. 


Tomorrow at 3pm I will have my PICC line inserted. Tuesday I am scheduled to begin antibiotics. And finally, finally, I feel like I am nearing the end of the road. I still don't feel scared, which is a huge weight off after being afraid for so long. I know that God will carry me through the valleys standing in the way of the finish line.

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be


 discouraged, for the LORD your God will be with you wherever you go.” ~ Joshua 1:9

Love and prayers for you all,

Kate

"Home" sweet "home"

Honey, we’re “home!”

We spent all day last Thursday and Friday packing like chickens with our heads cut off, trying to decide what was wanted, what was needed, and what would make the place feel enough like home.

Thursday evening we took a break from our frantic packing to head over to my parents’ house, where they graciously offered to host a “thank-you” evening to those who were the backbone of the fundraising committee. This, of course, was planned before we knew we were moving the next day, so the timing really wasn’t initially so bad. It was a wonderful opportunity to see people-- some I hadn’t seen in a really long time!  And when the evening wrapped up, I was given two precious gifts. One, a collection of letters from many of you (don’t let me go on about the tears I cried before I even started reading it!) compiled in the last week by my Wonder-Woman-of-a-friend, Carolyn.

The other: an intimate prayer session with some dear friends and family. And oh, was it beautiful!!

At the beginning, I sat there, praying silently as others did aloud, feeling like Jesus in the garden, waiting; waiting to go where He did not want to go; waiting, and begging for a way out. Nearer to the end, a vision came to me: footprints ahead of me. Not in water, or sand, but somehow leaving soft, lasting impressions in front of me. Then:  peace. So great was this peace that I could step, gently and confidently into each step in front of me, feeling the presence of the One who had walked them before.

 And I was ok. No more desperate pleas to get me out of this. No more anxiety about leaving my home. I was left with the most beautiful gift of the presence of Jesus, overflowing my heart and giving me all the trust I needed.

I read many of the letters when I got home that night. I have since read and re-read them all, knowing that book will be in tatters before I know it, when I return to re-read the words of love and inspiration as I need strength along the way. I stayed up until 2am reading them that Thursday night, and of course had to wake up to finish packing Friday morning. I was exhausted in a way that I have never been before. This, of course, didn’t help my concentration or decision-making abilities (let alone my anxiety levels!) But somehow (with the help of family and friends), we ended up with a truck full of goods; and, as we closed the doors, and said a silent prayer that we hadn’t forgotten anything truly important, we hit the road.

Usually the drive isn’t too hard on me. This time though, the lack of sleep + being out of bed packing, etcetera, showed me just how hard it could be. And as sore as I was, I think it was God’s way of helping me be thankful that I wouldn’t have to make the drive again anytime soon.

Matt’s parents, our little family, and our new nanny made the trip, just hitting a light snowfall in the last hour or so of our travels (thanks to all who prayed for good weather and safety!) We arrived at around 9:30pm, and I went to our friends’ (and now, neighbours’!) house to lie down while the strong ones unpacked enough for us to sleep in our new place that night.

The house is beautiful. There are many stairs. I’m not sure what you would call a house like this (a mulit-level split?) There are two small sets of stairs to get from the entry way to the “main” level, where the kitchen and bedrooms are, and two large staircases leading to the other levels; one up, into a large “greatroom”; one down to the basement, with a bedroom, bathroom, living room and laundry room. Jack, upon entering, had to climb up and down every set of stairs several times exploring, and then I think he gave 'em another go just for the heck of it!

 We brought just enough to furnish the greatroom (if that). I struggled to climb all those stairs Saturday afternoon so I could put my “feminine touch” on it to make it more homey and inviting and not so bare and huge. There is another small set of stairs from there (3 or 4, maybe) that lead to a small space that will be our office. It is much larger than our little bungalow, pristine, and, because of the size, quieter than at home, which is another bonus for me as I rest.

Saturday my parents joined us to finish the unpacking. Sunday morning, everyone went to mass, where our friends, Jen’s parents, had already gotten me on the prayer list. Our family just "happened" to run into my sister-in-law's sister three pews forward, stationed all the way from New Brunswick on missionary work! When Matt requested to bring me home the Eucharist, Father insisted on coming home to meet me, give me communion, and preform the anointing of the sick (which I had missed receiving two weeks ago due to a mix-up at our parish). He stood there, hands on my head, praying for a long time.  I couldn’t help but feel an overwhelming sense of welcome, gratitude, and God’s holy presence. The reassurance that this is exactly where we are to be came for the umpteenth time.

Yesterday was the final day for “company.” Matt’s parents and mine both packed up and left within a day of eachother. It is quieter, but thankfully, not lonelier yet. As my Dad left, he told me to get better, and I told him, “we are at the end of the road now.” And I didn’t just hope it, I felt it. For so long, God has been telling me to “wait”. I don’t feel that way these days. I’m not sure that my limited wisdom can interpret that for you, but I can say it doesn't feel that it is going to be long now, and that in and unto itself is a blessing!

After making a phone call, we clarified that tomorrow is the consultation for my PICC line (not the actual insertion yet). From there, we will get the surgery scheduled (sounds like it only takes around a week or so from the consult for most people). I still can’t help but feel with each stage that I have “so much to do” before I have even more of my abilities stripped from me. Did I tell you all that I learned to crochet online? Only about a month ago. I needed something to do in bed, and I LOVE it. I love being creative, and this is an outlet that I can express myself without needing many materials or movement. I am hoping the PICC line (or the herxes to follow) won’t interfere with it, because it feels SO good to experience that creative rush again!

Now, I am off to nap. I love you all and am so grateful for the ongoing support and prayers. God is here; He is evident; He is taking care of us, and He is GOOD!

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

 ~ James 1:2-4

Blessings to you all!

Kate

Possibly the Biggest News Yet.

I would have written this sooner, but since it has all been happening so quickly, I didn’t have enough information, or the chance, until now.

The night before our fundraiser, we had the most amazing, generous offer given to us. Our friend in Southern Alberta (who has battled Lyme as well) offered us a rare opportunity; in a sense, it is the chance to get better. He has selflessly loaned us his home so that we may be close to our Canadian doctor. Which means I will finally get to start the IV treatment we have been searching out for the past four-and-a-half months. Upon the consult of three doctors (our one in the States, the one in Alberta, and a trustworthy source close to home), we were confidently assured that this would be the “best,” “easiest,” and likely “only way” that I will be able to get the care I need. The loopholes we have been trying to find in this mess of knots don’t seem to exist, and as much as I really don’t (read: never ever, in my life, even-for-a-short-amount-of-time have ever wanted to) move, the thought of “easy” gives my weary heart peace; peace, and the strength I need to fight the increasingly hardest battle of my life.

We have hired a live-in nanny. She starts tomorrow, and has miraculously agreed to move with us. Matt’s work has graciously allowed him to return to his contract out-of-town, flying to and from the North West Territories weekly  from our new “home” instead. He is hoping to continue stress-leave for the week after we move, and stay in-town for my surgery. So, with my lively little boy, a nanny I don’t yet know, a small family I have grown to love, and my travelling husband, we will make what we can of this a home.

The timeline we have been given is subject to many factors, but extends anywhere from roughly 3 to 9 months. I will have to continue oral medication when we return; that being said, the aforementioned timeline is shorter than I was anticipating for IV treatment, which is a huge blessing. I was also told by my doctor that the levels of Lyme in my blood came back at a mere level of 3, (she currently has a patient with a titer of 51. 51!!) I was told to, “write down that number 3, and you look at that whenever you need hope.”

Have you noticed I like to leave the most pressing details for the end? (You can admit it, you skim looking for the important stuff!) The big question: when do we leave? This is the part I almost can’t believe, but we pack up and go in a mere 9 days. February 24^th.  (Have I mentioned I’m a “planner?” Nine days isn’t  much to work with!)

I’m a muddled ball of sadness, hope, peace, fear, weakness and strength all in one. When I think of our support system here at home: so amazing and loveable and energising—I almost can’t bear it. When I think of laying in this bed, in this room-- for the rest of my life-- I am so ready to do what is required, and can see the cost of staying is far greater than leaving.

I am sorry if this comes as a blow to anyone. I know it is a shock for us. I tried to call as many of you as I could. Please keep us in your prayers as we prepare full-speed ahead into this major life change, and if you would, ask that the Lord’s will be done? I’m too emotional to pray that prayer unceasingly, though it is the greatest desire of my heart.

Love to you all. We will only be a phone call, a Skype date, or an email away! (That was meant to console me more than you, but if you need it, I hope it helps!)

"I took you from the ends of the earth,

from its farthest corners I called you.

I said, 'You are my servant';

I have chosen you and have not rejected you.

So do not fear, for I am with you;

do not be dismayed, for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous right hand."

~ Isaiah 41:9-10 (Emphasis added).

And the total is...............

In case you can't see that, it says:

 $41, 986.21!!!

P.S.-- Look at all those beautiful people (they're my friends <3)

I have to say, I kind of feel like the candidates on Extreme Home Makeover after the crew yells, "Move that bus!!", and they see their new home, and start flapping their hands and weeping and hugging eachother (Erhm, I've only seen it a couple of times my mom watches it). I mean, I didn't *actually* behave that way, but I felt that way inside. On the outside, I was speechless. Amazed. Simply awe-struck. WHO receives gifts like this? How on earth can I begin to thank everyone? I certainly don't feel worthy of such loving generousity.

 I can only imagine how proud everyone on the fundraising team feels about this  (not nearly as proud as I am to know you, however).

Thank-you, thank-you, one and all for being a part of our family's success story. When we went down to the States, it was with the trust that since this was what we needed to do, God would provide. We didn't know when, or how (or if He was going to make us witnesses of how little one can live on and still be happy, so long as we had our health!!) Each one of you is a warrior behind us, fighting this dragon we are facing, one day at a time. And we ARE doing it!! Thank-you for being there with me.

"May the loving kindness of God our Father

 and the Lord Jesus Christ bless you and give you peace.

 Every time I think of you I thank God for you.

 I have joy in my heart every time I ask God to help you." 

~ Philippians 1: 2- 4

Praying that the Lord would bless you and keep you.

Kate

Today is unlike any other day for me; the aftermath of this weekend's fundraiser (which I was unable to attend) has left me more at a loss for words than even my worst Lyme days. I suppose I could liken the awe to that after my wedding day, except that I planned that, participated in it, and the guests attended to share in our joy.

Saturday night, over 300 people, some that I know--many that I do not, filled a banquet hall. They walked through the doors prepared to share in our struggles. And some of the most selfless, humble people I know produced what I have heard described as:  

“Amazing!”

 “A high-class event,”

 “...like a wedding,”

“[that] went off seamlessly!”

 ...all the while campaigning for my benefit. The silent auction tables were overflowing with gifts to be won: some donated from the loving hands that made them; others, from businesses and individuals the community.

I don’t know the totals yet. And quite frankly, they don’t matter. To go from thinking that maybe you can’t, to knowing you can, is the best gift anyone could have given our family. Hope.

To our friends who organised the evening; to the ones who volunteered throughout; to those who attended to show your support; THANK-YOU. You have given us a glimpse of God’s amazing love for us, and it is more overwhelming than I ever imagined. And because of that, I can say with full confidence,

“The LORD has done great things for us, and we are filled with joy!” (Psalm 126:3 )

and,

“No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us” (1 John 4:12) 

We used both of these verses in our wedding, and as different a situation this has already established itself to be: they couldn’t fit more perfectly now.

I would like to be able to post the video that played for those who would like the opportunity, but for now the best I can do is get hardcopies to those requesting them. You will have to settle for a few photos and the speech Matt gave on my behalf (bringing this post to a close):

To my dear family, and friends—old and new,

Thank-you all for being here tonight.  I have to apologize for my lack of presence this evening. I have known, regrettably, for some time that I would not be able to join you; my health has deteriorated to the point where my immunity doesn’t stand a chance in a crowd of this size, nor does my mental health. I have always loved to be part of a crowd; now, they leave me a victim to panic attacks from the overwhelming anxiety that comes from amplified noise, smells, and lights. And as good as I sound on paper, these words can’t seem to flow the way they used to without considerable thought. As much as I regret not being here tonight, for the evenings’ reputation has preceded itself, I would be remiss if I didn’t make an appearance somehow.

This has and continues to be an overwhelming experience for our family. Almost immediately upon our return from the States, we were approached by our beautiful friend, Kim Bombak, requesting consent to start planning a fundraiser. Before we knew it, an entire team was formed, and many nights (and days) were spent planning, meeting, and coordinating the smallest details to the most extravagant ones. As much as we are overwhelmed by this disease, we are overwhelmed by peoples’ unbridled love and generosity towards us as well. This night would not be the spectacular event it is without each and every person on this team, and we are so grateful and humbled by the friends and family we have been blessed with; some that have been there from the very start of this dreadful disease: making meals, cleaning our home--and later, caring for our son. Friends I know we will have long after I’ve recovered.

Thank you all for being here tonight. For caring; for proving the overpowering amount of good in the world, and for making an incredible difference in our family and in our lives.  Just being here tonight, giving Matt the opportunity to see the army behind us, means the world.

Each and every one of you is in our prayers. Each and every one of you is an answer TO our prayers.

I hope that you enjoy the evening; that you would feel blessed and inspired by being a part of something bigger than all of us. Something that, together, I know we can beat.

We love you all.

 Kate

Photo Credit Ruth Frechette and?? (-- please let me know!)