A Grateful Heart

Tomorrow Advent begins! The time of prayerful anticipation as we wait to re-live the birth of Christ; hopefully, learning new ways to seek and love Him in the days leading up to Christmas and beyond.

In preparation, Jack and I have been “reading” the book, ‘Three Gifts for Baby Jesus’ about the three Wise Men and their journey to pay homage to the new King. I say “reading” because it consists mostly of me quickly paraphrasing the overly long text, while Jack excitedly says, “Horsey, horsey, klop klop klop!” as he points to the camels on each page, until we reach the last one with the manger scene.  At the end, I have been explaining to Jack that the kneeling Wise Men offering gifts are there to say, “Jesus, you are God, and we love you so much that we want to give you our favourite, most  important things—the things we love the most.” Then I tell Jack that he would probably give Jesus Ellie (his well-worn elephant lovey), because she is his favourite thing; and that I would give Jesus him, because he is MY favourite thing.  If I were to reflect further, there are many more important things I can offer: the plans I had for my life, my will, my marriage, etc.

Over the course of my illness, I have been blessed with wonderful people who have offered me and my family their gifts.  A great many of them have offered us their greatest gifts; time, in this oh-so-busy world; money, when they could have used it themselves; friendship, in magnitude I have never in my life been so blessed with; and finally, their hearts—whether it be in prayer, a card, a visit, a birthday party, or the gift of insight into their own life that I may have only scratched the surface on otherwise.

We pray each night for “all the people that help us out so much” as we kneel by Jack’s crib. I also pray that you would be blessed for all of your efforts, no matter how big or small they may seem to you. God knows the heart with which you offer them. And what you do for us-- you have done for Him! God’s blessings, and a prayer that you would know the peace that this season can bring; one outside of shopping malls and wish lists; one only found in Christ our King!

“Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world.  For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in,  I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me...’
“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’   ~Matthew 25:32-36,40

Waiting, Seeking, & Healing

Well here we go! Our appointment came and went, and here I am, trying to piece everything together so as to comprehend what is to come.

First off, we were an hour ahead of schedule. That is the tricky thing when you are attending an appointment in a different time zone! We called back an hour later, only to find the doctor running late. So, we waited 45 more minutes for her call. But you don’t want to hear all this.

The juicy details came rather monotonously. She listed off ALL of the 35 tests she took that came back negative (I think to make me feel better about what was to come), lacing in only a few positives (tests, that is). The summary?

I have Lyme Disease. (Are you surprised?)

 I also have Bartonella, a co-infection. My test for Babesia (another co-infection) came back negative, but the doctor thinks I still may have it based off of the many symptoms I display, and it’s tendency to hide from the immune system, providing a false negative (which means, it may pop up later, once other things are healed). They found Biofilm in my body, which is not only protecting the Lyme BUT...(cover your eyes if you are easily grossed out) aiding an intestinal parasite as well. Are you totally disgusted? I know I am. I actually don’t know how to nonchalantly lead into this next sentence, but here we go: I have low progesterone, which we already knew based off of my NFP charts, and that it is being caused by the Lyme. The tissues around my thyroid are out-of-whack --those are fancy medical terms, for those of you who don’t understand them, send me an email ;); yet another contributor to my fatigue.

None of the genetic factors that can make it especially difficult to treat are present, which is great news.  The activation of clotting is high in my blood though,  blocking the capillaries, creating hiding places for the Lyme spirochetes, and depleting my body of oxygen; consequently causing the seizures; also, affecting my circulation and ability to eliminate waste (and in turn, toxins) very well; and last, and but not least, contributing to my pain levels.  Oh yeah, and those weird dreams that I couldn’t wake up out of? They weren’t hallucinations: they were a type of seizure. Strange, isn’t it? Anyway, the result of these...results (ha!) mean I get to learn how to give myself shots of Heparin twice daily, until I am completely better. And while this still freaks me out, I have had roughly 6 weeks to process the idea, so I am slightly more accepting of it (key word being slightly).

My vitamin B12 is also so low, so I have to get injections in my butt three times a week. My mother-in-law was all too ready to offer to do that for me...funny (she later claimed it was from all of her previous nursing experience, but I still think it might be payback for all of my crankiness!) My folic acid gene is mutant (sounds cool, eh?) which means 50% of my cells aren’t working as they should to heal my body. The remedy is a supplement which bypasses the gene problem to provide my body with what it needs to heal. My adrenals are bottomed out, which causes all sorts of problems, from healing very slowly to severe fatigue. Another test showed I have no good bacteria in my body, a small amount of yeast, and low levels of bad bacteria. All of which aren’t as bad as they could be, and treatable.

And lastly, my body is carrying around viruses,  including high levels of Influenza A, something called Coxsackie, and a mild case of Mono.

All along the Doctor would say one result, and then, “that’s where your pain (and/or fatigue) is coming from,” or, “that is what is causing you so much pain” over and over again with each new result. She actually said there was no question as to why I can’t get out of bed anymore. And as bad as all of this sounds, it’s incredibly validating. Like many other Lyme patients out there, I bounced from doctor to doctor having the severity, source, and even the existence of my symptoms questioned.

My supplements and antibiotics were tweaked, new ones were added, and then the question I can’t stop asking came: “what about IV antibiotics? When are we going to start those?” She said that we should give the heparin two weeks to thin my blood first, so the antibiotics could perform at their finest. Just as she began to reassure me that she believed it was the best choice, the fear began to kick in, and make me second-guess myself. I decided that my desire to get better was larger than my fear, and dove in.

So that is the plan. We won’t treat for everything at once, of course. We will kill off a few things at a time, making sure my blood is thin enough to efficiently get the antibiotics where they need to go, that my body can handle the treatment, and that I have the vitamins, minerals, and supplements to keep my body strong enough to fight this off.  She said she is expecting the classic Lyme to be able to get treated in one year (vs. the original projection of two!) And even though I have all of this other garbage going on in my body, it is less complicated to treat than some of the initial possibilities, so the timeline for those might be shorter than we were initially looking at as well (Praise God!)

Matt had his appointment next. The good news first: he does NOT have Lyme! (I thanked God out loud for that one!) He does, however, have an even more serious case of Bartonella than I do. One of the tests showed that he has had it for more than two years; so, it may have been caused by a cat scratch when he was younger, and it wasn’t until now, when put under all this stress, that it reared its ugly head. The main symptoms: high levels of anxiety, and low levels of energy, which cause problems with concentrating and organisation. He also has huge amounts of Biofilm protecting it. He is going to require 6-9 months of medication (antibiotics and supplements), which will cause Herx reactions in him as well (flu –like symptoms, and/or the worsening of what he is already experiencing: anxiety, lack of energy, and insomnia); to what degree, we don't know.

As for Jack, our sweet little Jack...his blood test to Germany failed to get sent. So, we wait another 6 plus weeks to get the absolute confirmation; BUT, all of the tests that the Doctor has used for years to find markers for Lyme showed nothing; as did the blood work we sent to the States initially. So, while I am not absolutely sure, I have strong hope that we have that blessing headed our way. It was recommended that he get referred to an ear, nose and throat specialist as his tonsils were severely enlarged when we were down in the states, and there was no reason they could find for it. Tests did find four different infections in his GI tract though (including E.Coli and a type of pneumonia); I asked how he got this, and the answer was: from being a baby; crawling on the floor, having a dog, putting toys in his mouth, people not washing their hands before preparing his food, etc. In addition to this, there is a problem with his bile functioning properly (making his poop too acidic, and causing him lots of painful diaper rashes). He isn’t digesting fats properly either. So, the plan for Jack is three months of antibiotics which will simultaneously kill all GI tract infections; a probiotic to add good bacteria to his system; an immune system booster; and finally, some vitamins and supplements to fix his bile issues. Until all of this is cleared up, he is to hold off on getting his 18 month vaccination (she said that anyone with a virus should wait until it is cleared up before they get vaccinated for anything anyway!)

We will receive our prescriptions by mail sometime next week. Matt figures it will take some time to get them processed, which means by the time we get the heparin two weeks underway, it will be closer to Christmas when we start the IV treatment.

I am scared; I feel as though I am not ready to jump into this right away (for once in my life I am grateful for processing delays!)

 I also feel a lot of peace about things. That this is good news; that we are following the right path.

I wonder what Christmas will be like for our family this year? 2010 was a time of waiting for our baby to be born; 2011 a year of seeking answers to my health problems; And, as painful or difficult as it may seem at the time, I think this upcoming year of 2012 will be a one of healing for me and my family. Please pray with us as we grow through this. 

Thank you for all of your prayers and kind words, as we entered into the unexpected, with a bravery not our own. We couldn’t do any of this without the support and love we have poured down on us each and every day.

^“ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

   For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Corinthians 4:16-18

Well I thought I should touch base before the BIG DAY on Wednesday. That's right! Our doctor's appointment via telephone is just two days away!! When you are sick, and stuck at home, time lingers on; days run together; now, it feels like this is pressing upon us so suddenly. That which I have been putting off in my mind is so close. Potentially life changing information awaits: our test results. ALL of them. And as dramatic as all of that  sounds, I am feeling quite calm.

When we were down in the States, as much as we learned, I sort of expected...more. More in the sense that I thought drastic changes in treatment would come immediately after. Knowing now that it didn't work out like that then, and that I have no control over the outcome of what lies ahead (or the timeline in which it will unfold), I have a sense of peace. (Kind of the "ignorance is bliss" type, perhaps?)

I recently read an article about a man who lost a fighting battle with cancer. It was heart wrenching, and enlightening. He missed so many major events in his final days; and, while I could identify with a lot of what he was saying, it helped me to realise this: I am not dying. At one point I may have been; without treatment, that could've be the direction I ended up heading. But I have hope that we are on the right track, on the road to recovery, and to be able to see the big picture again is a gift that man left behind for me: that this is not forever. This is not forever.

You never know who's going to touch your life, or whose life you will end up touching. But I am so grateful for that gift from a stranger.

We are also still on the hunt for the perfect live-in-nanny. Is there such a thing? I am struggling so much with the fact that I have to take this whole "letting go" thing to the next level. I don't know how to reconcile who I want to be as a mother with who I have to be.

Please pray for us? That our hearts may be prepared for what is to come, that God leads us to the person who is just right for our family, and that we may have the strength to keep on fighting for our lives as a family-- no matter what.


  "But you, LORD, are a shield around me,
   my glory, the One who lifts my head high.
  
   I call out to the LORD,
   and he answers me from his holy mountain.

   I lie down and sleep;
   I wake again, because the LORD sustains me. 
   I will not fear though tens of thousands
   assail me on every side."

   Psalm 3:3-6

I don't know how hard this is going to be to write; I have been sleeping 18+ hours a day for the past few days, and fighting off a fever, chills, nausea, and dizziness. A couple of days ago, about 8 hours too early, I got the most intense feeling that I was detoxing from my pain medication; a feeling I used to get from Percocet when I would wait too long between doses; a gnawing inside my bones; restlessness; extreme anxiety...only one thousand times worse than with Percocet. We chalked it up to the sweat from the fever making the drugs less effective, and changed the patch a few hours earlier than specified.

Today, it happened again. Only this time, an entire day before the patch required changing. We contacted the doctor in the States, and she said my symptoms sounded consistent with a Herx reaction; to drink lots of water, and do everything I was instructed to do to battle a herx (anti-histamines, lots and lots of water [which is hard to consume when you are sleeping and nauseated!], taking this pill that helps flush your system out [which didn't come in the mail until today!], etc.)

So, here I am, going between being blazing hot, to a completely frozen drug addict with the flu, feeling like I'm detoxing from extremely strong narcotics. I've had better days, to say the least.

We have been on the search for a live-in caregiver, mostly for Jack, partly for me, and lastly for our poor, is-almost-never-clean-but-for-the-goodness-of-others, home. It has been interesting, stressful, and difficult on so many levels. Stressful for Matt (he wants someone in place before he leaves for his next out-of-town shift), difficult for us to find candidates at all, let alone someone that I would deem an appropriate replacement for, well, ME. I have probably said this before, but my entire life I have dreamed I would be a stay-at-home mother, (and as a friend so cheekily put it the other day, I am ;)), yet this is not in the way I ever would have hoped it would be.

In the process of this illness, I have gone through a journey of acceptance. Of letting go of taking care of Jack full-time; of learning that this is not a minor illness, but a lifestyle change; of giving up my home, my evenings alone; of losing the ability to bathe in private, or drive a car. I was explaining this (to the same friend I mentioned earlier) that I find illness embarrassing; personally, I find weakness in myself at all, embarrassing.(This is a pride issue, I know. Believe me, God is stripping me of that pride constantly!) I said that I guessed I had a hard time admitting my illness for such a long time to others, because I didn't believe it reflected my personality, or who I am inside. She said she thought the contrary. That I wouldn't be experiencing this, or fighting this, or responding to this in the manner that I am if I wasn't still "me" underneath; that my personality is shining through more than ever in light of what I'm going through. And even though God knows I struggle with pride, He knew I really needed to hear that, too.

It is people: their prayers, their comments, their devotion, their friendship that make me love my life. Despite the garbage that this illness throws our way, those people show up, with their strength of personality, and show me that I am not alone; I am not without strength in their numbers; and, that God is love, through them, whether they intended to be witnesses of it or not. And I am so grateful.

And it is in my husband, the unsung hero, the quiet rock that keeps letting Jesus glue him back into the chaotic sculpture that is our family, who keeps pushing me to be my best--sick or not; who teaches me and shows me everyday what real love means, even when he doesn't know it.

So yes, I am sad. I am sicker than I have ever been. I am angry at Lyme disease, and the fact that I still have it. But I am grateful too. For everything good that God has brought out of this. And man, is it good!

Please pray that we will find the caregiver that is right for us, and that our family will continue to find strength in our weaknesses.

"Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

2 Corinthians 12; 8-10 

Well, I have some good news, and I have some bad news. Which do you want to hear first? I will take a gamble and guess at the good news.

The good news is: I have an amazing doctor!

The bad news is: I have begun to have hallucinations.

Here's the story. Since around the time my seizures started back in August, I noticed I was having weird dreams. You know, the kind where you dream that you have woken up, only to have something strange happen to you to make you realise you are, in fact, still dreaming? Well it was those types of dreams. Only, it was taking me a number of times to wake up. And each dream was more realistic than the last. I used to be able to wake up from a dream as soon as I could tell that I was in one.

 In these cases, I think I have woken myself up; I can look around my room, etc, but then something will happen that tips me off to know that it is still a dream, and I will "wake up" again. Sometimes I can talk (which must be sleep talking, because I can hear myself), but most times I can't. Since I have returned home and started my new meds, this is happening almost every time I fall asleep. I have also found that my seizure activity has increased in both number and severity. 

Monday afternoon, right after I took my lunch meds and half of a Valium tablet, I lay down to rest for about an hour or so. It felt like, for the last half hour, I was struggling desperately to wake up, but I couldn't. I could hear the voices of my family in other parts of the house (saying certain things they later confirmed were not said); I was struggling to move, talk, or do anything. Sometimes I could manage to yell for my husband; other times, I couldn't make a sound. I was over-heating and struggling with my blankets one minute; the next, I had fallen to the floor, only to "wake up" back in my bed again. I "woke up" into one extremely realistic dream after another, close to 15 times, before I actually woke up. Afterwards, I had difficulty making sense of which parts had really happened (none of them), and which hadn't. I was left absolutely terrified. I had felt like I was trapped inside my own body, and I was scared to go to sleep again.

I sent my doctor a fax the very next morning, and within hours received a phone call from her nurse. She asked me a few more questions: if I have had any other type of hallucinations (the answer being yes; auditory hallucinations over the past two weeks, where I have been hearing sounds that aren't really there), and if this was affecting my daily living. I told her I was too scared to go back to sleep for fear I wouldn't wake up again, and she told me that it was good I was responding honestly because they would likely only get worse with time.

SO, an anti-psychosomatic drug has been added to the mix. Scary sounding, isn't it? I feel quite weirded-out about the idea of needing medication to control psychotic behaviours, but grateful as well; grateful that they not only believed me, but also that they knew exactly what I was talking about and had a solution for me. The good news outweighs the bad, I think. I finally have exactly the doctor that I need; one that is knowledgeable, efficient, and understanding of this disease. For someone in my position, I couldn't be more fortunate!

Oh, and there is more good news I saved until the end (a sandwich effect, if you will, for those of you who chose the bad news first): it is my not-so-baby brother's birthday today. If you know me, you know I am big on birthdays. I love having the opportunity to celebrate the very existence of people (especially those whom I love the most!) and Jesse is one of those people that I love the most. He is an inspiration, a source of strength, a reminder of God's faithfulness, and one of my very best friends. Happy birthday, Jesse! I love you more than the world.

 I cry to you, LORD; 

   I say, “You are my refuge, 

   my portion in the land of the living.”

  Listen to my cry, 

   for I am in desperate need; 

rescue me from those who pursue me, 

   for they are too strong for me. 

 Set me free from my prison, 

   that I may praise your name. 

Then the righteous will gather about me 

   because of your goodness to me."

Psalm 142: 5-7

  

Not Happy, but still full of Thanksgiving

I’ve been putting off writing this post until my current mood and situation had passed, so I could be a lot more cheerful and positive than I have been feeling lately. As it is taking longer than I had hoped to pass, I am here with an update regardless!

Since we have gotten home, life has become even more difficult. With Matt having to go away so soon after arriving back home from the States, the stress from our trip seemed to grow beyond our arrival back home, through the preparations of Matt leaving, and into having him gone; the escalation storming down on us when he returned  home on the weekend.

The night before Matt left for this past shift, the family conclusion was made that I am not able to drive or be alone overnight with Jack anymore. Many factors played into this decision; from to increased seizure activity, to how sleepy and loopy (and downright dull) the new cocktail of meds makes me feel; and last but not least, the potential for unpredictable lapses in judgement, caused by taking Valium, helped us see that it was the safest choice.

 It was also the most difficult. In addition to trying to find full time help caring for Jack during the day, now we also need someone over night. (That is, when Matt is out-of-town every second week for work). I was devastated. Now, even the smallest amount of care that I could provide for Jack on my own was slipping through my fingers like sand. Time spent getting him up and fed first thing in the morning, and the occasions when he woke up in the middle of the night needing his mommy; time for just the two of us, with no one else in the house; time I had to be a "real" mother; time that I treasured...gone.

So, we had both of our moms, and our dear, dear friend come and spend several nights each with us, as I slept so heavily I didn't even hear Jack when he woke up in the middle of the night. And, when Matt's flight got fogged in, leaving him stranded up North for two more days, these poor, exhausted women, with nothing left to give, came back and gave even more.

I couldn't help but feel like a gigantic burden on everyone.

The day after Matt left, my dog of 11 years, Toby, had to be put to sleep. The day after that, we had gotten word that a friend-of-the-family (once removed), was interested in adopting our sweet, Tasmanian-devil-of-a-dog, Holly. And while the home seemed like the perfect fit, losing two dogs in the span of one week was another rock added to my heavy heart. We scheduled the new owner to come pick Holly up, on their way back to her new home in B.C., for the day Matt's flight was (originally) due to arrive. But as I said earlier, that flight was delayed (and delayed again!), and poor Matt missed getting to say goodbye to the puppy that he loved so much.

My meds have kicked in, as has the latest Herxheimer reaction. I have been putting into practise my learnings in the States about resting even when I desperately want to be doing more, and I think it has been of benefit in more ways than one. Not only am I getting into healthier habits of what my body can handle, I also am suffering much less during this Herx reaction than I would have if I tried to carry on the way I did before. In the past two weeks I have limited myself to one hour-long outing per week, and even they left me in more pain than I could handle.

 I have also realised that my OCD and anxiety go hand-in-hand. When I start to feel anxious, it is because my body realises that I cannot continue on the way I have been. But, because my mind wants to finish the job, anxiety builds as I attempt to finish my to-do list in the rapidly-decreasing amount of time that remains before I feel like I’m going to collapse. However, if I push through the anxiety, the OCD kicks into high gear, giving me an energy boost; thus, tricking my body into feeling like I can keep going. The lesson? When I start to feel anxious, I've already over-done it; which is helpful in managing both the anxiety and the pain!

In short, it has been an exhausting, painful, and extremely emotional two weeks; ones that have brought be back to wondering, "why me?" and left me with a weakened resolve. This entire illness seems to go in cycles of me giving-up, only to have God sustain me. And right now, I am in the giving-up phase again. Gratefully, I have not cycled back to this point in quite some time, and hopefully, each cycle will get longer, and the moments of defeat fewer and further between.

Even though I have been feeling depressed and defeated, God has been holding me close and showing me His goodness.

A good friend of mine from college got married last weekend, and with great disappointment, I was not able to go. She came over just the other day, and explained to me that she told her guests about our situation, and that instead of clinking glasses to encourage the bride and groom to kiss, the guests would have to throw money in a jar that they were collecting for us. Here, on the most important day of her life, she was thinking of me! I can't tell you how humbled and overwhelmed we were by their thoughtfulness and generosity.

Yesterday, Jack crawled into bed with me, cuddled in really close to read stories, and filled my heart to overflowing for forty-five whole minutes (breaking his last record by an entire 40 minutes!) with the time I got to spend being his mommy. No gift has been greater than that moment.

I’m getting a glimpse of understanding into the verse,

“There is a time for everything,
   and a season for every activity under the heavens:

   a time to be born and a time to die,
   a time to plant and a time to uproot,
   a time to kill and a time to heal,
   a time to tear down and a time to build,
   a time to weep and a time to laugh,
   a time to mourn and a time to dance...” (Ecclesiastes 3:1-4)

 I am so grateful that the two sides intermingle, and that I don’t have to wait until I am better to "build" (relationships), and laugh, and catch glimpses of the joy that is to come (if not in this life, then in the next).

Hoping that you all had a Happy Thanskgiving! And if, for whatever reason, you weren't happy-- I hope you still did some thanks-giving :)

I have been slowly chipping away at this post for the past week, adding bits and pieces to a word document along the way. Here it is, as concise as it will get! Starting from Tuesday last:


And the whirlwind continues.

Yesterday was another busy day, in a way I have never experienced before. We were all up early, and made it to our appointment on time. I hadn't slept very well the night before at all; my body was buzzing with the threat of a seizure, and I was so worried I would have one I don't think I fell asleep until one in the morning.

I was so nervous all the while getting ready, listening to Matt and his parents visiting as they waited to go, thinking to myself that there was nothing normal about this day.

We arrived early, and had to wait. They came out and took my temperature and blood pressure, then after more waiting, we were taken back into a room with Dr. Ryser's right-hand nurse, who began to take my history. All I can say is, no matter how time consuming and especially difficult my preparations were, God had blessed them and my appointment by them. The nurse sat there, reading through the letter I wrote of all my symptoms from the very beggining; with each paragraph she mumbled as she read, proclaiming, "Oh my!" "Bless your Heart!" Oh my GOSH," "Bless your.." "Bless your heart!" And, "it is SO good you took the time to write this;" I had to agree, as most times she stopped to ask me a question, I had to send her back to reading for my memory wasn't able to give her the answer she needed. Not did only did she get details that would have otherwise been forgotten, but she got them from me quicker than I could say them (and we still ran late!) She took a history, which included childhood pets. She asked questions like: where did we get them from, did they live indoors, did they ever sleep in bed with me, and were they ever sick (if so, how did it present?)

The doctor came in for the physical. She and the nurse took a look at my upper body and within moments they were saying to eachother,

"Do you see that?"

"Mmmmhmmmm."

(Me) "...see what?"

Multiple signs of co-infections just by looking at my skin; faded red spots beneath the surface; stretch mark-type lines in places they shouldn't be (my shoulders?); "detox" bumps. How hadn't I noticed these things? It was amazing (and oh so validating to me!) that just by looking at me they could begin to tell what my body is going through.

Then came the in-house tests. If you ever want to know how to torture someone, listen carefully. Two words: Nasal Swab.Now, if you have ever experienced a throat swab…you still have no idea what this is like. A long, thin metal wire, composed of two strands twisted together and topped with a Q-Tip head gets inserted into one nostril and pushed so far back it ends up in your throat.As she went about it, the nurse said, “gently, gently, gently,: (more to herself than me, I think).  Also, it “might” hurt?!? Words can’t describe the pain my poor nostrils felt. Strangely enough, when Matt’s turn came, all I could do was laugh. Hmph.

After that, I had to rush to the other side of the clinic to have my blood drawn so I could be back in time for Matt’s appointment. (Side note: Thank goodness for Grandpa Thiel! Jack was kept occupied the entire day, and not once did we have to worry about what he was up to, or if our appointments were running behind.)  A beautiful Southern black woman was the nurse in the lab, and she told me to, “sit down, Mommy,” as she tied on the tightest tourniquet I’ve ever worn and began to draw the blood. At one point, I looked over at the needle and pile of vials on the counter and she chastised me saying, “well don’t look, child!” (I simply wanted to know how many vials she was going to draw!) After many attempts at finding out, she finally told me when all was said and done how many vials she drew. Want to take a guess? I’ll give you a hint: 46. And this was after fasting for 14 hours.  

Matt’s mom sat with me, rubbing my hand and making conversation. She told the nurse that, “[Kate] is a seamstress, you know.” I don’t know if she realised the power her statement held for me; there I was, hooked up to an IV, having tube after tube of blood drawn, looking and feeling as sick as can be, and there it was: a brief, humanising statement; one that made me remember who I am beyond this disease. I will be forever grateful for her for that moment. And, I did manage to make it back for Matt’s intake appointment, and then Jack’s as well.  Afterwards, we had a brief visit with the doctor who gave us her take on what she could tell us so far.

Now, the good news in everything that we have found out is this: someone actually knows what is going on, and what to do about it. Not much was said the first day (not compared to how many questions I had, anyhow).  The doctor suspected that I had not only Lyme, but at least one (and more likely, two) co-infections with it, as well as Beta Strep--which she figures I have had my whole life (I’m just finding this out now?!), along with the potential of many other viruses wearing my body down. Jack likely has at least some of what is going on with me.

The very worst of the news: I have been “severely under-treated” for Lyme these past six months. As a result, the disease has gotten used to being treated by antibiotics and created cysts throughout my body, using them as caves to hide in and avoid attack. The treatment I was getting did more harm than good, and I will be harder to treat as a result.  We scheduled a brain spec scan for the morning and headed back out for dinner, all exhausted and famished from our respective days.

The next day, Matt and I were up before the sun to head to the Kansas University hospital to get my brain checked out. With each day of our trip the fatigue of travel and constantly being “on” caught up with me. This morning, my body was so sore, so tired, I almost couldn’t get out of bed. The test they had scheduled involved getting radioactive material (tagged glucose) injected into my body after resting in the dark for twenty minutes with my eyes closed. An hour after the injection I went for the scanning portion, where a machine took images of where the radioactive material showed up in my brain. The results depended on how much or how little appeared in different places. 

I don’t know if it was having a foreign substance in my body that did it, or simply having to get up at the crack of dawn, but as we walked back to the hotel room waves of nausea, fatigue, and severe pain overwhelmed me. I still don’t know how I climbed the stairs to our room. I literally could not lift one of my feet off the ground and onto each step. I crashed in bed and didn’t get up for the rest of the day. The boys returned to the clinic to have more blood drawn. Apparently, Matt almost passed out from the 45 vials of blood required; his mom said even his ears went white! I had to pull myself together that evening to make it to appointment number two no matter how awful I felt.

What we learned that evening was more informative, validating, and hopeful than everything I have come across combined (and I know I didn’t even process half of it!) Dr. Ryser sat us down and explained to us how Lyme disease works, why some people get it and some don’t, and why you have test in so many different ways to see if it is there (something Canadian doctors don’t understand). We were walked through how some people are genetically predisposed to Lyme disease because they are born with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) and how this makes you susceptible to getting really ill if exposed to bacteria (like the one in the tick that bit me). Also, because of my genetics I am more likely to display certain symptoms over others. She also explained the cycle of my illness, that even though my  adrenals are extremely fatigued, my brain isn’t working properly and as a result I push myself to do things that I really shouldn’t be able to do (to an Obsessive Compulsive level).  

The results of my spec scan from the morning were in already; I don’t know what I expected exactly, but after so many Canadian tests coming back “completely clear,” I was more than a little surprised when this one actually showed something! More than something-- it showed how each lobe of my brain was affected. OCD, significant memory loss, inflammation throughout the body, difficulty concentrating, learning and retaining information; difficulty making decisions; anxiety, anger and depression. Thankfully, it also showed that my balance has not been affected, that I have no tumours, dementia or Parkinson’s present at this time.  

She said that 70% of the problems were caused by the Lyme, and therefore, when treated they will disappear (praise God!!) She explained that my brain isn’t getting enough oxygen due to hyper-coagulation of the blood, (one of the many symptoms I have of Babesia, a co-infection), and the seizures I have been experiencing are the result.  Once we have the blood tests to confirm hyper-coagulation, daily injections of blood thinners will be required. Thick blood also works to line the arteries; the Lyme uses these barriers to hide as well, so the injections will not only help to oxygenate the brain and reduce seizures, they will also to break down the blood clots so the antibiotics can reach the disease.

When asked for a prediction of how long it would take to get better, the doctor said that it was far too premature to tell. She would say this: Classic Lyme (the disease without any co-infections) usually takes two years to treat. I obviously have more going on than that, including the damage done by the antibiotics already taken. And though it might take a while, she reassured me that there was a lot of hope for being completely disease-free one day, and that many of her patients go on to return to full health, and even have children. I cried.

Such good news was bound to be followed by bad news. We can’t keep our dog, Holly. Cats and dogs are more likely to infect someone with a weakened immune system than other humans. Because Jack plays with Holly, gets kisses and touches her toys (and puts his hands in his mouth), he could be getting infected and re-infected no matter what treatment he may receive. We aren’t allowed to go to people’s homes with animals (the importance was likened to having severe asthma). Our options were this: to adopt Holly out, or to farm her until we are better, then get what could be very expensive vet tests done to make sure she isn’t a carrier of what we have just recovered from (if she is, get her treated, too). We just can’t afford “option B.”

The three of us aren’t allowed to share utensils/straws/etc with anyone (including each other) because of the risk to our health; and, until our test results are back, and we know what we are dealing with, we aren’t even allowed to kiss each other on the lips! It is of major importance that no one comes to our house when they are ill (face masks are required for those who are uncertain), again because of how weak my immune system is. I may not end up presenting with the same symptoms, but I will end up weakened by it.

We received our new diet plan, and I was pleasantly surprised. It has a few less restrictions than the other ones I was trying to follow (namely, more sweetening agents are allowed, and I don’t have to worry about trying to combine the right foods, like keeping meat and grains separate), so I excitedly agreed to it. Matt and Jack have to be on the same diet as well (with the exception of Jack being allowed cow’s milk and some cheese). Matt, not having suffered through the past 4 weeks of trying several other alkaline diets, is taking some more convincing to say the least.

Day three brought even more information about Lyme disease, some test results, and our current plan of attack. Now, because we are waiting on several other blood tests to come back, and even more to be done upon return to Canada, we don’t have all the results needed to formulate our official plan of attack. Starting on the wrong antibiotic, especially a really strong one, could push the disease even further into hiding. So despite my desire to dive in head first, an oral antibiotic was selected that was capable of treating both co-infections and classic Lyme. This will “ease” me into treatment by IV once we have all the test results back.

A ton of supplements were suggested to break down the biofilm and attack the bacteria, build up enzymes that genetically just aren’t there, make it possible for my body to absorb nutrients again, and to help detox. Valium was prescribed to treat seizures as they come (suspected to be more frequent during a Herx reaction), as well as to help with anxiety and insomnia. And last, but most important to me: a painkiller (in patch form) that is even stronger than Percocet (which stopped providing pain relief while we were travelling). It needs to get changed every 3 days, and has the benefit of sending a steady dose into your blood, bypassing the harmful effects to the liver and stomach, and hopefully eliminating the ups and downs of pain and loopy-ness.

 A telephone appointment was scheduled for November 16^th. At this time all of our test results should be back, and we can get everything in place to begin the proper IV antibiotics. We spent the rest of our evening packing up so we could leave early in the A.M. I had brought a book along with me for the little down time that we had; an account written by Steven Curtis Chapman’s wife, Mary Beth, of her life and how it just didn’t go according to her plans. The biggest derailing she journalled about was adoption of three of her children, and a subsequent accident that would kill one of them. Now, this might sound all too depressing a read, especially when there is so much information coming at you about how your own life is completely changed; but I have to say, God really spoke to me through that book. No matter what this doctor was telling me, I still have my son; I still have my husband; I have the support of the most amazing family. The fact that the brunt of this is happening to me and not them, (especially my baby), is the most reassuring aspect of this whole situation.  

I sat in the kitchen of our hotel room and tallied the list of bills are headed our way. The best the lab could do was providing us with approximates. According to my calculations, testing and appointments alone cost us around $31,000. We haven’t begun to factor in flights, hotels, meals, car rental and gas. Nor have we accounted for monthly supplements, syringes, IV bags, etc. We went through a range of emotions at this discovery: panic, anger (at the healthcare system), stress, fear. The one saving grace that kept us from bursting into tears was the firm belief that this was what we needed to do.

After landing late Thursday afternoon, we continued our travels to Southern Alberta to see the Canadian doctor who is willing to prescribe for us. We were welcomed into the home of parents who have helped their son fight Lyme disease for 15 years. We felt so grateful for the opportunity to stay with them, and get all sorts of tips on where to order our supplements at wholesale cost (approx $300/month vs. $600.00), IV bags, syringes, etc. Escorted to our doctor’s appointment, we got our monthly blood requisitions, prescriptions filled, and the paperwork completed for my very own handicapped parking pass. Afterwards, I had the opportunity to meet Derek, their son, and learn even more about what was to come.

“Will you do me a favour?” he asked me, “attack this while you still have your youthful zeal. Don’t be afraid of how sick it will make you; just hit it head-on until it’s gone. You need that energy to make it through.”

We packed up, and shortly after were on the road again. Again thankful to have a place to stay in Calgary, we made the transition back into reality slowly, staying with friends before heading home Saturday morning.

And  here we are! Home; Scrambling to get unpacked, laundered, and organised before I start my antibiotics and Matt leaves for work. It has been a crazy week past; busy, tiring, overwhelming, informative, affirming, reassuring, frightening, and hopeful all rolled into one. Here’s to baby step number one! Headed in the best direction (and likely, hardest, too). Blessings to you all.

“We’re not exactly doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” C. S. Lewis

“And the God of all grace... after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast.” 1 Peter 5:10

Well, here we are! After a week as hectic as the one before our wedding (and just as, if not more, stressful), we arrived in Kansas City late last night.

Matt finished working a two week stretch so we could have the time to come out here without adding time off work to our list of expenses. It was a trying two weeks, especially trying to get all of the paperwork, etc. together for our trip on my own. I thought I had accounted for the difficulty of being tired, and the hurdle of being in pain, but what I didn't account for on the list of things making preparations harder than ever was the absence of my mind.

Now anyone who has had a conversation or two with me knows it's like visiting your grandmother (and not just because I try to feed you all the sweets in my house); with phrases like, "have I told you the story about...?" or, "please stop me if I've asked you this before..." but it isn't just my memory that has been affected. In the frenzy of getting ready to go away, I also noticed that I have lost my ability to concentrate, multi-task, get motivated, prioritize (you know, all essential components of effective organisation); I didn't realise that I have, in essence, lost my mind.

Our travels went about as well as I expected. We made the drive early in the morning to Calgary so we could fly from there to Denver; from Denver, we had a bumpy, somewhat delayed flight due to thundershowers (the lightning show from the sky was both remarkable and frightening), and of course, because it wouldn't be a Thiel family trip if our luggage wasn't lost or damaged, we arrived in Kansas minus one very important detail: Jack's carseat. Fortunately, the airline was quick to give us a suitable loaner and deliver ours to the hotel when it arrived later today.

We found such a beautiful church to attend this morning, that I am sure if we lived here it would be our home parish. We test drove the route to the clinic to  time our trip for tomorrow morning, and came back to the rain drying up and a warm, humid afternoon. Met a lovely couple from Arkansas out at the hotel pool (the gentleman being a survivor of Lyme thanks to his treatment in the States), and every step of the way I have been entirely grateful for Matt's parents travelling with us to give us their love and help and support.

Tomorrow morning we wake up bright and early, and so it shall begin! Our doctor was updated before leaving about my onset of seizure activity, and mentioned that because of that she would likely want to start me on IV antibiotics as soon as we return home. Now this of course is subject to change once we actually see her, but I am feeling hopeful and terrified all at once; after so long, this feels as though it is so "sudden," and I have been left wishing I had fit more in before I am destined to get even more ill for who knows how long. God has been keeping me close, though, and my heart is feeling steadier (if not entirely ready) for what is to come.

"My eager expectation and hope is that I shall not be put to shame in any way, but that with all boldness, now as always, Christ will be magnified in my body, whether by life or by death. For to me life is Christ, and death is gain." Philippians 1:20-21, emphasis added

^"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. So then, don’t be afraid. I will provide for you and your children.” 

Genesis 50: 20-21

While I'm Waiting

Lying in bed all the time, I do a lot of "waiting." Waiting to be the mother I want to be, the wife, friend, support system, cook, seamstress, etc. that I love being.

 I can very easily feel useless, unable to do things I was once able to. And yet, in God, I am productive; my weakness is strength; my waiting is on Him, and with that, all of this becomes meaningful. One doesn't need to be able to do any of the above to receive the wisdom of God; they simply need to be open. And that-- that I can do ;)

 This is my prayer... that the words in this song, though not always true, would be so today.

I'm waiting
I'm waiting on You, Lord
And I am hopeful 
 I'm waiting on You, Lord
Though it is painful  
But patiently, I will wait

I will move ahead, bold and confident

Taking every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting

I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord

And I am peaceful
I'm waiting on You, Lord

Though it's not easy
But faithfully, I will wait
Yes, I will wait
 

I will serve You while I'm waiting
I will worship while I'm waiting
I will serve You while I'm waiting
I will worship while I'm waiting
I will serve you while I'm waiting

~ Lyrics by John Waller

(And in case you want to hear it for yourself:)

Seizures and Tremors and Meds, Oh my!

Less insight; more of an update this time. I am a little more than moderately sedated right now, so we will see how this reads. (Or rather, you will-- I am going to bed as soon as this is done!)

Two weeks ago, when Matt and I were away at his cousins wedding, I was woken up in the night by convulsions that started in my sleep. In my dream (I will share this, because the subconscious can have quite a sense of humor), I was being electrocuted-- by Matt-- via the means of Holly's shock collar. I woke up, convulsing; unable to speak and struggling to move my arms which were magnetized to by body. Matt woke up once the episode subsided, and needless to say, I was quite shaken up (no pun intended!)

Later that week, it happened again; this time, four in a row, waking me from my sleep. Fully conscious, yet again unable to move or speak. I went into the hospital only to have the ER doctor tell me that all bloodwork/CT scan were clean, and he didn't know what was causing it, After a quick search informing him that seizures are, in fact, one of the many symptoms of Lyme disease, he came back to inform us that he (get this), "think[s] it almost certainly doesn't have anything to do with the Lyme disease." What does it have to do with, you ask? Well, that, he didn't know. I was sent home with an appointment for an EEG for the following week.

My GP later confirmed they were seizures, and after speaking with our wonderful advisor in Southern Alberta (the mother of a patient of our soon-to-be doctor in the States), I was told that this is typical of a neurotoxic overload. Essentially, the bacteria have been dying off so quickly for so long, releasing toxins the whole time. Without giving my body a break from the antibiotics to detoxify, the toxins have been recycling and building to the point of causing the worsening of symptoms, including seizures. Upon her recommendation, I went off of my antibiotics for 10 days to give my body a chance to detoxify. It worked! After ten days of not being allowed to drive, bathe, or be alone at night, my seizures gradually lessened and I was able to resume antibiotics (and daily living).

Yesterday brought on a whole new worry for us. After a verrrryyyy early morning with Jack, I was napping soon after the babysitter arrived. Upon waking up, I discovered I couldn't move. Waves went rushing through my body and I felt disoriented. I began to pray, but had difficulty concentrating. Then the tremors started. Different from the seizures, my stomach muscles heaved forwards, clenching up, causing my whole body to shake uncontrollably. After some time, I managed to prop myself up and phone Alberta Health Link. I explained the different types of medications I was on, including a new antidepressant prescribed to help manage chronic pain. As usual (please forgive my cynicism), they did not know what to do, and "strongly suggested" we go back to the Emerg.

So, away we went, me-- as white as a ghost, shaking and bobbing, exhausted from an ab workout I haven't gotten in years-- and my poor, paniking mother. We were admitted right away, an IV line threaded (with an unnecessary amount of blood loss as a result); saline and electrolytes pumped into me and blood drawn for tests. And last, but not least, they looked into drug interactions.

Voila! There it was: the serotonin levels in my blood were far too high. Between the amounts in my antibiotics and painkillers, and that in the new antidepressent (prescribed to rebuild the receptors in my brain to interpret pain at lower levels) I was so full of the stuff  that it pushed my body over the edge. The treatment: go off of the antidepressants immediately, and start taking anti-seizure/tremor/anxiety meds that relax your muscles and make you super loopy for the next week (which is how long it will take for the old drugs to fully vacate my system.) I also plan to go off of all meds (necessary painkillers excluded) until our appointments down south so I can be as detoxified as possible, and capable of travel without the worry of seizure or tremor (or any other episode) one would hate to experience on an airplane.

So there it is! The latest (and scariest) symptoms yet. This doctors visit really can not come soon enough!!

"The greatest greatest honor God can do for a soul is not to give it much, but to ask much of it." ~ St. Therese of Lisieux

This has been the theme for me in the past week. I had a very generous offer last week for the laying on of hands (which I gratefully accepted), and while I didn't spontaneously heal as a result, the experience was just what I needed. In the days following, the deep depression I was under had lifted. Not only that, but I had the opportunity to really embrace my gratitude for the gift that suffering is.

When I began my journey back into my faith, I was on fire for God; in the passion of my love for Him I begged that He would allow me to be more like Him in every way. I can't honestly say that becoming like Christ on the cross was what I had in mind though. My fire for Him still burns...steady coals vs. the raging fire that it once was. No less, but somehow deeper.

I want with all of my heart to be healed: soon, suddenly, without effort or continuing toil. More than that though, I want God's will. And the patience He has laid on my heart leads me to believe He is telling me to wait.

There is great value in suffering. Am I suffering because of God? Of course not. Is He allowing it? Yes. And because He is the King of kings, the Great "I AM," in all of His power and majesty He can, and will, heal me when He decides the time is right. Suffering isn't evil (Lyme disease is, I am sure of it!) but suffering because of it is not.

To ignore the gift of suffering, to fail to embrace this opportunity I have been given: that, to me, would be a greater waste than all the life this disease has stripped me of.

So this is what I will continue to hold on to in the weeks to come:

"Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." ~James 1:12

Have a good week, everybody!

Welcome to my blog! This is the first of I don't know how many attempts to keep the people I love connected and informed. So here we go...

I read a quote today: "depression is anger turned inward," and it struck a chord with me. I've been feeling very angry lately; and the combination of Matt working out-of-town, coupled with my desire to stay positive about what life has dealt me, has left me turning my anger inward, so to speak.

I finally got up the guts to watch "Under Our Skin," a documentary on sufferers of Lyme disease. I was prepared to have a difficult time watching it, having been warned that I wouldn't likely be able to view it all in one sitting. My ever-so-gracious sister-in-law offered to watch it with me, but at the last minute I chickened out; I was afraid to watch it alone, but the thought of potentially falling apart in front of someone was even scarier for me. So, I prayed a rosary that God would guard my heart, and dove in with Him instead.

Before I go any further, let me just say: please don't watch it. It was horrific. I think the horror lay somewhere between hearing the truth about what Lyme disease is capable of,  and actually seeing how hard the battle is to regain one's health. And while I am all for being informed (especially since this is happening to me), I couldn't bear to watch others suffer like that. It made me scared. Even more so, it made me angry.

Angry that I have to share my body with such a selfless, heartless, merciless being. That is what we're dealing with: an intelligent, deceitful, harmful being. One that uses its little spiral form to drill into every place it can; not bound by blood but forcing its way through tissue and cartilage and bone. It makes me sick to think of.

And if it were something that the majority of doctors, or society, or scientists knew what it is and does and how it can be stopped, it might not make it so bad. But the truth is being ignored, and lives are being taken away. You can fight, but not too loud-- you might get your doctor in trouble for treating you. It is ridiculous.

The other thing that struck me about the documentary was this: I am so lucky. I can sit here and worry and mope and fret about the possibility of not being able to have any more children, or I can look at the beautiful one that I have and see how lucky I am to have had the opportunity to be a mother at all. Same goes for my marriage. It has not for one minute gone the way my girlish dreams imagined; and yet, I have a wonderful husband. I can't do many things with our friends that I wish I could...but even still, I have the most amazing friends. And there it is-- the light in all this darkness. Blessings that may have gone under-appreciated; relationships that may have gone unformed; life that may have just slipped by.

I know that it is normal and healthy to feel anger, and I know that it will be a part of the roller coaster of a battle with Lyme. But if just for right now, I am going to be grateful for all of the people that create the "ups" in my life, and make this battle worth fighting. (Thank-you).