01/04/12 Today marks our last appointment with our doctor in the United States-- ever. I was very much hoping this day with coincide with my full return to health; but sadly for many, her retirement came sooner than both of us anticipated. Matt found out first, and broke the news to me two weeks ago on our most recent trip down to see our Canadian doctor. He had just returned from working out-of-town, and was set to pack us up to hit the road the very next day. In the whirlwind of his travels, he finally got a moment to share the news with me. I’m not sure if it was the uncertainty to my impending reaction in his voice, or just plain shock at the news, but when he said, “Um, I have something to tell you. Dr. Ryser is retiring….in two weeks,” I had to ask him about six times if what he said was a joke. This couldn’t be true. It just couldn’t. Sure, she was past the age of retirement when we met her; yes, we knew this was one day, a possibility; but so abruptly, and with such little warning, I just didn’t know what to make of it. Inside, I went blank. I didn’t know what to feel, so I didn’t.

Our time down south was very different than usual as well. Health circumstances prevented us from our usual visits with friends; even going for my dressing change lacked the familiar faces I knew from last year. In spite of it all, we were well taken care of in every manner; and our hosts were as hospitable as ever, even if we didn’t get to enjoy as much of their company as usual. Regardless, it was wonderful to see our loved ones’ faces and share what time we could.

My appointment went well.  It was the first time we had a physical consult (vs. telephone appointments) since last September; and, up until the shocking news was dropped on me, I was excited to see how much change our doctor would notice in me. When we arrived, however, all I could think about was what this new change meant for me. Most of all, I wondered what it meant for my recovery, and if a full one was still possible.  

As always, our doctor was a delight. She was so pleased to see and hear of all the changes since we had visited last, and was quick to assure us that even though this news was unexpected, it didn’t have to be scary. She will continue on as my primary physician; and will be able to consult with our American doctor as needed (so long as there aren’t any names given, since she no longer holds a licence). Our doctor here has been working with and “apprenticing under” our doctor in the States for years. She is confident and intelligent, and both doctors believe her to be capable of managing my treatment from here on out.  And while I have never doubted my physicians, it is nerve wracking to suddenly lose one of them; it feels as though my safety net has been pulled out from under this tightrope I’m walking, and all I have left is God.

Some changes to my medications have been made, again; helping my body process and remove toxins in the most effective manner, so that I may have the energy to keep killing these diseases off. That means a reduced med load with one drug, and more vitamins and fluids to flush my system out. We are also in the process of trying to discover if my insomnia is still a symptom of Lyme, or if that has cleared up and it is simply habitual. This involves eliminating my lunchtime dose of Valium, (as it makes me quite tired); and adding in an OCD inhibitor, so that my mind will actually shut off at bedtime-- instead of going into overdrive and keeping me awake at all hours-- even when there is nothing to do. It also has an anti-seizure property to it, so reducing the Valium shouldn’t cause any seizures. I am also to keep my blinds open during the day (and if that isn’t enough, get a SADS lamp that turns on when I wake up) to turn my internal clock around and teach my body how to be awake during the day. I am to be getting up earlier and earlier slowly over time (and going to bed earlier and earlier, as well). The goal is to take my 12 hour wake cycle and switch it to the daytime instead of from 5 pm-5 am. So far I am finding this drug to be somewhat effective. The first few days of taking it I was so inebriated by it I couldn’t think. It was the strangest thing. Within minutes of taking it, I couldn’t focus on what I was reading or anything other than just lying down so I could sleep the feeling of confusion away. Just as with the Valium, my body is now starting to tolerate it, and the effect is lessened. I am able to go to bed earlier, but my brain is not as muddled, and it takes longer to fall asleep.  My hours are improving more than I had hoped in this short amount of time, but I am still encountering one major symptom: brain fog. It only seems to bother me during the day. I am more forgetful, less mentally alert, unable to focus, etc. It is why I actually don't mind keeping such odd hours—I feel like “myself” during these times. I can write; crochet; plan; decide. All things I have difficulty with during the day still. I really hope and pray that if we can get my sleep cycle back to “normal”, my brain will follow suit. It would be a shame to sleep the best part of my mind away.

I had a few questions regarding all of the changes, of course. I wanted to know what this doctor thought of my prognosis now that it was just the two of us. She was just as positive as ever, expressing how much improvement she observed since she saw me last. I was told, “I don’t know what the ‘old’ Kate was like, but the Kate I met; the one who came into my office in sunglasses, curled up into a ball, unable to think and speak for herself—she doesn’t exist anymore. I don’t think you were aware of just how sick you were; or how far you have come. Did you realise you just conducted this entire appointment by yourself? Sure, you consulted your notes at first, but any patient with a long list has to do that!” We spoke of other improvements: my anxiety lessening, for one.  And at the end of it all, she said she still fully expected me to make a complete recovery, emphasising just how well this has gone. I asked for a guesstimate on how much longer my port would be in use, as that the question I get so often (after, ‘how long until you’re better?’) Not being able to say for certain, she estimated I would be doing IV’s for another year or so. Not always antibiotics, however, but accessing it for fluids after we are done with IV meds.

During the course of the appointment I felt less like my usual self with her, and more how I was with my former doctor; challenging, disputing, and overall advocating.  It will take some time to get used to, I think. I wanted to be sure; now that we didn’t have another doctor to bounce ideas off of, I needed to know that this was, in fact, the very best plan. I know that she has my best interests at heart. I am grateful and impressed that she has hired another doctor so she can focus her practise on the patients that need her expertise. I guess it just comes down to change. Change is scary. Changing doctors (or losing one) is scary. Not overwhelmingly so, but enough to make me question what God has in store for me now, and if this was part of His plan all along.

 In the midst of my final phone call today, wherein the doctor rushed to tell me of other available physicians in the States if necessary; of her confidence in the doctor I have here; and the privilege she felt to be our doctor and a part of our lives, she gave us room for one more question.  Matt and I agreed beforehand on what it would be, should we get the opportunity for even one (we knew she had tons of patients to contact in very little time). 

“How will we know if or when it is okay to have another baby?” I asked. “Obviously we can test to see if I am better, but Lyme can go into hiding; and a trauma, like childbirth, has the potential to cause a relapse. How will we know that won’t happen?” 

Her answer was this: we test. If everything shows I am healthy, we can go ahead and decide to have a baby. Nobody ever knows if their child will be healthy; but with the young women she has seen in cases like mine, they have gone on to have healthy pregnancies, babies, and beyond. Because I will be undergoing such extensive testing, I may even have a better chance at preventing other illnesses as well, as the tests taken aren’t part of the routine testing here. And, should there be any question or concern about mother or child after a baby is born, we test again. We know what we are dealing with, and we know how to treat it.  And while this still seems a ways off before we can even consider something like this again, it gives me hope.

Last week, our parish priest came by to visit and give me the sacraments. He asked how I was doing (emotionally), and to be honest, I felt like crying. I was low on hope that day; not knowing what this all meant, or what was in store. 

I just told him that, “Most of the time I am okay. I have gotten to this good place with God where, while I want to get better, I am happy to do His will if it means staying right where I am”.

 “NO!” he exclaimed (much to my surprise). “You must not give up hope. Hope is so important for healing. Trust that God will make you well, and He will.” 

I told him that Matt had rented me a wheelchair so that, for the first time in almost a year, I could attend mass this Easter (providing that I was feeling well). 

As he left, I said, “I hope to see you Sunday!” 

He replied, “No. You WILL see me Sunday!” 

 God has been running this theme of hope in my life for a couple of weeks now. He always knows what I need, even when I don’t.

I attended dinner with my in-laws on Saturday, and it was so great to see Jack and his cousins play, and enjoy hunting around Grandma and Grandpa’s house for chocolate eggs.  Jack has such an eye for detail, he noticed half of the candies before it was even mentioned a hunt was on! Sunday morning I got up in time for breakfast with my boys, and to Jack’s utter delight, prepared to go to church as a family. We parked my wheelchair at the back where there was a few feet of room behind the pews, and a place for Matt to sit. When Jack wasn’t on my lap, he was blissfully dancing to the music (which turned into excitedly running in circles at some point, but hey, I won’t question his interpretative creativity). It was such a joy to see! And if that wasn’t busy enough, I even managed to attend Easter dinner at my parents’ house, though just by the skin of my teeth. In retrospect, it was far too much for one weekend. But sometimes you just don’t know until you try.

I don’t know what the future holds, but I like to see it this way: cleaning my kitchen while I watch my son play outside; taking him to the park, and coming home to make my family dinner. Babysitting my godsons; and being there for family and friends when they are in a bind. Driving again. Going grocery shopping. Attending parties, and hosting events. Going on a second honeymoon with my husband; and experiencing life together-- outside of our home. Attending mass as often as I'd like. Having adventures as a family. Finding out that I am pregnant, and watching my belly, and my family, grow; watching Jack become the world’s greatest big brother. The list goes on and on, really, if I let myself hope. I just need to let myself hope.

Blessings always,

Kate

“The steadfast love of the Lord never ceases,
    his mercies never come to an end;

they are new every morning;
    great is thy faithfulness.
 ‘The Lord is my portion,’ says my soul,
    ‘therefore I will hope in him’”

Lamentations 3:22-24

“Let all that I am wait quietly before God,
    for my hope is in him.

He alone is my rock and my salvation,
    my fortress where I will not be shaken.”

 Psalm 63:5-6

Next week will mark 2 years since my diagnosis (my proper diagnosis, that is, of Lyme).  I can’t say I thought this is where I would be 2 years later. Quite honestly, I thought 2, 3 months max., and I would be done with this. Regardless, it has been quite a journey, and here I am. (Almost) 4 years after being bitten, 2 years after being diagnosed, One year of receiving full and proper treatment, and…? And the rest we don’t know, do we? I’m not sure if I would rather know when it ends or not. Knowing could be quite exciting; give me a goal to work towards; a finish line to keep my eye on. It could also mean depression and despair, I suppose, if the timeline seems too far beyond my reach. Not knowing…well, that takes faith, doesn’t it? I quite like faith. Faith has become more than a practice or a passion; faith has become a lifeline; a routine required to stay alive; a reason to keep fighting. And a reason to keep trusting, when I don’t feel I can fight any longer.

 Quite a lot has taken place health-wise since I last wrote, and as such, there is little else to report of. I have been Herxing steadily since Christmas; and with the die-off happening faster than my body could release it, I eventually became toxic. It took some time to figure out-- I knew only that I wasn’t feeling “normal,” as my Herxes generally consist of the same symptoms each time. This time, I was not only experiencing worse bone pain and fatigue than usual; but also severe headaches, neck pain, nausea, and visual distortion; all so great I couldn’t hardly eat or move. Thankfully, our friends were just a phone call away, and quickly were able to identify and suggest remedies while I waited on our doctors to return my calls. Sure enough, our “honorary doctors” knew exactly what they were talking about, and a week’s regimen of plenty of fluids, a break from the overly-effective antibiotic, and a ton of Vitamin C (along with all of my usual meds) was later confirmed to be the best course of action.

I began feeling better (and by better, I mean able to sit up) within a couple of days—just in time for Jack to come down with the flu. My poor baby has never been so sick in his life (thank goodness)! And after an hour of Matt running around like mad trying to clean up after and care for our boy, I was called in to help. While Matt washed sheets and cleaned carpets I rocked my baby on my lap in front of the toilet, alternating between positioning him when needed (crying only when he couldn’t see me) and reeling him back in for cuddles; until he had nothing left , and all he could do was fall asleep. It was the first time since he was a small baby that he not only fell asleep in my arms, but did so without the aid of his not-so-stuffed elephant.  Matt lifted the both of us to my feet, and I lay him in a bed thrice-changed. He cried out several times, “I don’t want to throw up!” in his sleep. The whole experience was just heartbreaking.

Not at all surprisingly, just a little over 24 hours later, I too was hit with ‘The World’s Worst Flu.’ In one way, I “cheated the system”--by not eating. Can’t get sick if you don’t eat, right? Wrong. Can’t get sick as often if you don’t eat, but besides dodging an all-nighter with the porcelain throne, every other symptom raged. Bone and muscle pain like I have never felt; nausea; a splitting headache; fever; vertigo; chills;  and the most vivid nightmares I hope to never have again. As I lay there, in between dreams, I prayed. I cried. Most importantly, I had two “re-epiphanies” (things I already believed, but was struck with even harder with this time). One: I am SO grateful that I am the one with Lyme disease, and not my son. The saddest part of being sick myself was knowing THAT was how Jack had felt the night before. Two: We can do hard things. Even the things that make us feel like we are going to die. Even the things that make us WANT to die. We can do them. Things that were once deemed difficult can suddenly seem possible in the wake of even larger struggles. I know that is what happened to me, as I wrestled through that flu, without choice of whether or not I would fight on. I just did. My body just did. And as I prayed my mind grew in wisdom; and my heart was softened in a way only suffering can do.

 In case you are all wondering: Matt also came down with the same flu, and bounced back in a way only my husband can. While I was laying here, still delirious, sleeping HIS BIRTHDAY away, he was walking around like a marathon runner preparing for a race, guzzling water and doing whatever needed to be done. It wasn’t until around eight o’clock on his birthday that I snapped out of my delirium long enough to even wonder if it was his special day, or if it had come and gone. And you know what? He could have been really disappointed. But instead, he comforted me when I got upset over missing it. What would I do without him? I don’t ever stop wondering that.

The next weekend, two days after officially being over the flu, we celebrated. Packed up Jack, his beautiful auntie and cousin, and took the closest parking space available at West Edmonton Mall to take in the “Sea Caverns” there. It was a lot of fun (even for someone who detests most sea animals), and watching Jack, and holding my nephew, and being “normal” was wonderful. We even got to go for frozen yogurt , and on to the pet store to dream about which puppy we would own next.  My mom and brother joined us back at home for Matt’s birthday supper, which was amazing to finally get a chance to socialize in what felt like one of the few times since Christmas. And then, I kinked my neck. Not like, “Ow, my neck is tingly and numb. Bummer;” but more like,”OHMYGOSH I kinked my already sore neck beyond any neck pain imaginable and can’t move. Not my neck, not my shoulders-- not even my arm!” (I am not embellishing this: I breathed through it like I was in labour!) I spent the next 42 hours sleeping so as to cope with the pain. I was able to get into the chiropractor, which gave me temporary relief, only to slide whatever he slid into place back out again. Thankfully it isn’t as bad as last time, but it is still difficult to sit up, move my head, etc. And I haven’t been able to stay awake for much longer than a few hours at a time. I miss Jack. And I miss feeling well enough to see my friends.

For a long time now I have been blessed with the patience to be okay with where I am in life, and all that comes with this disease. But I have to say, last night it got to me. I needed to cry about it. I needed to feel frustrated and fed up, and just vent about it. And through all of my tears and emotion, God was there. He was there giving me things to be grateful for. And as I closed my eyes, and felt the hot tears stream down my face, I could see myself. I lay there, crushed under the weight of a giant steel boulder, nothing but my hands left uncovered. My body was ruined. But from my hands rose the grace of God, like smoke; enveloping the boulder until my mind and my heart—my ability to choose, and to love—rose to the top. So as to say, “You don’t need your body, Kate. Don’t give in to bitterness and despair simply because you are being held down. I can carry you up; up, over your pain, and beyond your limitations; and I can help you to think and love so much greater than that broken person can now, if you will let me.”

And so, I will let Him. I will choose to let Him every day, every time I feel like every last bit of life is being pinched out of me, until all I can breathe in is Him. It has been a hard couple of months. It has been lonely, and at times not at all what I wanted.  It has most definitely been what I have needed, though: time in the desert with my Lord. Just as He intended. Time that I may once have seen as wasted I can now see the lesson in. And it only took two years. I wonder how much more I can grow in another two? ;)

Blessings and Hope,

Kate

"Cast your burden on the LORD, and He shall sustain you; He shall never permit the righteous to be moved." Psalm 55:22

Here I am again, this time, feeling as though I am climbing out from under a rock. Christmas was great, followed hard by a Herx, then a cold, and onto another Herx again; with really no breaks in between. Matt has been working between two different diamond mines, so his shifts are more erratic than usual, and no matter how many times he tells me, I always seem to forget where he is going and for how long. For some reason, when he is home, I feel like I can give myself the permission to sleep and get the rest I need; because when he isn’t working, I am assured that Jack is getting quality time he needs with at least one of his parents, even if it is so heavily weighted on one end. When Matt is gone, I feel guilty if I don’t see Jack most of the day. These past few weeks I have been feeling a whole pile of emotions, and while I am usually confident in Jack’s childhood (or comforted that he is living God’s plan for him, too), I worry, at the very least, about not being around for him when Matt is not. So, I try to push myself. But lately, more often than not, pushing myself has not been an option.

The greater population of Edmonton is sick right now, it would seem, fighting some sort of cold/flu virus. Between so many of my friends and family being sick, and my inability to feel well enough to socialize, it has been a long month of almost no visitors. I would dwell more day-to-day on how lonely it is-- if I wasn’t sleeping my way through most of it! I know many people have been experiencing how boring/depressing/challenging/etc. being homebound for more than a week is, and a few have commented on how they, “just don’t know how [I] do it!” But really, as with most things, it simply gets easier with time.

My depression has really leveled out as of late, with fewer lows than ever; and I’m feeling really grateful for Jack, and all the joy he brings, especially while cooped up in the house.  Someone asked me just recently how I keep my spirits up. “God,” I said; “God, and prayer, and time. God has been working on me for a long time now.” My outlook has come a long way; it has been through a desert of formation; and it continues (and always will, I hope!) to be shaped by God. At first, of course, I was in denial: That I wasn’t sick, or that it would go away on its own; or, that this really wasn’t that bad; and years worth of treatment? Oh, no—not for me! This was just a small bump in the middle of my fast-paced life. Then denial turned into fear. Fear turned into anger. Anger turned into depression. And then—and then it was just…okay. Don’t get me wrong, this is one heck of a Herx that is kicking my mental butt right now, determined to kill the even-keel God and I have going on right now. And the feelings that come with talking about, seeing, and hearing of new babies everywhere lately has turned my mind into one giant, ticking clock; and with every stroke of the minute hand my heart breaks… my insides ache…just a little bit more.  I am glad I know what is going on. I know that my mind hurts my heart when the Lyme hurts my body. And when the cloud lifts and I can write, think, and feel more clearly, I will be back to that beautiful place that God has prepared for me. The one that is okay with this. The one that will stay here, if it means it is where God wants me to be. But maybe that is why these Herxes need to happen, in part. Maybe they aren’t just here to hurt and discourage (I mean, “remind me that the Lyme is dying, and my body is healing”); but to keep me from getting complacent. I am good where I am. And I will stay there—if I have to. But, Oh-- Lord willing, I would rather be making my son breakfast first thing in the morning instead of once again, losing the war with insomnia, and having him tuck me in at that early hour instead. I want to be vacuuming the living room instead of lying in my bedroom; and waiting for my husband to come home to a meal I cooked, instead of sleeping through his arrival-- leaving him and Jack eat alone, again.

Each day I am given the strength I need. “Trust,” or “be grateful,” or “you can rest awhile, I am carrying you.” And I cry tears that the God I love knows just what my heart needs to hear, and that He loves me, too.

I once wondered, angrily, why God would give me a child if I couldn’t take care of him myself. I was just newly bedridden, Jack was 10 months—not quite walking, and my heart couldn’t stand to hear him cry for me as I closed the door, unable to hold him or care for him—only to collapse into bed out of pain. I have realised time and again how ignorant I was in that question (hindsight is 20/20, after all). First of all, while I don’t believe God gave me Lyme disease, I do believe that He knew that I would get sick. He also knew my body wasn’t likely producing enough progesterone to conceive in the first place, let alone carry a baby to term. I not only carried, but gave birth to, and nursed a child whom could have contracted this disease from me during any one of those opportunities. But he didn’t. This child I wondered about; that I ached to care for; that I hope to be better for; that I’ve prayed every day for: this child is a miracle. And it doesn’t end there.  A little boy, who may never have stopped playing trucks to cuddle, or read instead of wrestle, now comes to me: arms full of books! He sits, snuggled in, and listens to story after story; for as long as I will let him. Together, we are learning all about the world; through the course of what we read; and through the eyes of each other.  And oh, how he makes me laugh! Oh—how he makes me love.  He gives me the drive to be my best for him; the hope of a future that contains him; and the joy that there is more to life than what I once knew. God has been with me every step of the way. He has gifted me the saving love a mere child can hold; first in His Son; and now, as a beautiful reflection in my own.

So, if a child can unknowingly be the hands and feet (and heart) of Christ—how much more can we, if we try? Or do we really have to “try” at all? From what I have seen, it is a pure, uninhibited, humble presence that opens one up to being Christ for another. That is what I am going to pray for this week: to have such a pure, childlike, faith that being Christ to the world just “flows.”

Blessings and love to you all,

Kate

 "In the multitude of my anxieties within me, 

Your comforts delight my soul." 

Psalm 94:19

 "Why are you in despair, O my soul? 

And why have you become disturbed within me? 

Hope in God, for I shall again praise 

Him for the help of His presence." 

Psalm 42:5

 "Therefore I will look to the LORD; 

I will wait for the God of my salvation; 

my God will hear me." 

Micah 7:7

Gifts in Abundance

Well I would say it’s about time for another update! Advent and Christmas have come and gone for most of the world, and we have plenty of news to update you all with (so bear with me if this is long! I promise I am leaving the lesser details out!!)

The week before Christmas, we had a phone appointment with our American doctor to go over anything new and discuss the results of the tests we sent away as the outcome of our last appointment.  For those of you who don’t remember, this past summer I was feeling quite discouraged about feeling so sick all the time that we decided to re-test for the major offenders, to see just how much progress I had made since last September, when this new treatment began. Since I had come from a doctor whom, after months of treatment (in 2011), finally figured out I was only getting worse under his care; we figured spending a “little” more money sending my blood off to Germany again was worth the cost for the peace of mind and understanding of how to best move forward.

In the weeks leading up to my appointment I had ample time to reflect on what had changed, and what had improved over this past year. People ask me all the time how I am doing, or how “it” is going. And day to day, week to week, even month to month, it is sometimes difficult to see lasting change. But over this past year...over this past year I was quite convinced of many changes, however slow and steady they may be taking.  And as I prepared my list of improvements, (no more seizures or hallucinations; my hormones balancing out; and most recently: stretches of feeling well between my herxes) I prayed that God would give me positive news during this appointment. It didn’t have to be positive to anyone but me; but my heart really  needed something it believed was good news.

And there it was, once again-- all too soon after waiting for far too long: the results. Well, Jack, as we have known for awhile, is in the clear. Matt, who was far more ill than anyone realised, is now 80-90% better! He is to remain on course for the next 3 months, at which point we will retest if there is any question that it remains. As for me? I got my positive news. My tests came back showing that I now have a functioning immune system! And as such, my Lyme scores came back higher, since my immune system is better at detecting it (which means my scores would have shown higher last fall, had my immune system been strong enough to notice how bad it was at the time.) The tests showed I have lower levels of bioflim (which shelters the spirochetes and keeps them in hiding); so now the Lyme is more easily accessed by the meds I am taking and killed. More great news: my body is finally absorbing and using nutrients from food again! Both doctors (US and Canadian) were pleased to see that I have gained weight as a result. And after being warned that this is still a “long road to China, Kate—a long road to China...” I was given my greatest news yet.  After only one year of treatment, two surgeries, and 10 months of IV therapy; and, well, we won’t count all those other years that weren’t helping anything; I am, overall (that is to say, parasite, co-infections, and all) -- 40% better! THAT IS ALMOST HALF!! I’m almost halfway there!!  And I can feel it. Praise the Lord!

Quite the difference, isn't there?

The following days were a testament to just how far I have come (and how good God is to me!) Last Friday I decided on a whim that I wanted to get Jack’s picture taken with Santa. I had plans with my sister-in-law to do some last minute gift shopping, etc, and thought that maybe—just maybe—I could bring Jack along on our first stop. He is always asking if I am coming along with him and Daddy places: heart-wrenchingly disappointed when I’m not; and equally as excited when I can. I figured we would get his photo taken, have a special lunch out together with Auntie and his baby cousin; pick up the one or two items we needed; and have him home in time for his nap (and us on our way to our next destination!)

 Well, our guesstimated one hour turned into three and a half. Jack has decided that he doesn’t like riding in a stroller anymore, so silly me, I didn’t even bring it along to help carry our bags! I’m clearly not used to taking a toddler out. Even a shopping cart would have done. But no—we entered the mall at the opposite end, loaded with my diaper bag, purse, and his winter coat; all the while overheating in my own; and trying to hold his hand as he pulled this direction and that, in the crowded mall of shoppers, wanting to touch and climb on everything he shouldn’t.  Even eating out, Jack played the usual game of “I only want to eat my carbs,” requiring all my best tricks to get him to eat (which worked in the end! One point for Mama!!)

 Santa was fantastic, and really knew what he was doing. He somehow got Jack peeled off my legs and onto his lap without any manual labour required! When asking Jack what presents he wanted Santa to bring him, Jack replied, “I don’t need your presents—I have LOTS [of] presents under my tree!” And when Santa wouldn’t stop making suggestions, Jack finally settled on, “Erm... [a] BIG present!!”  Despite his initial reluctance, and disinterest in Santa’s generosity, we not only managed to get a good picture, but Jack excitedly rushed back to yell, “HI SANTA!!” every time we passed by thereafter!

Jolly old St. Nicholas and my handsome boy <3

It was, needless to say, exhausting. At the end of it all, I could barely walk. I was overwhelmed by the amount of care a 2.5 year old requires, especially in a busy mall with the fear of losing track of him, let alone caring for his needs and getting the errands done! My respect for mothers (and Matt!!) who do(es) this all the time climbed even higher on the charts, let me tell you! My sister-in-law was kind enough to remind me that in the case of most mothers, there are baby steps, and time to ease into the chaos each new stage of development brings. The last time I took care of Jack on my own was over a year ago, for a day ; before that, it had been another 10 months prior when I had to go from taking care of my baby daily to giving in and asking for regular help. So as hard as our little excursion was: it was good. It was so good! To be a mother, out and about, caring for her son, getting things accomplished—sigh. It was Christmas gift #2.

Gift number three came the very next day. Many of you know that due to insomnia (one of my most prevalent and annoying symptoms—and apparently, one of the last to go) I sleep in until noon everyday, at which time I take half an hour to gain coherence so I can begin reading with Jack to get him ready for his nap. Well, this day (when I should have been plastered to the bed, recovering) Matt woke me up by saying, “this [potty training] thing isn’t working. Jack has gone through 5 pairs of underwear just this morning. I give up.”

“Did you read the book?” I responded. The book that, for months, has been sitting on my bedside table; the first half being read, and re-read, with so little retention that it was finally set down to collect dust. But the night before when Matt decided, as he was getting ready for bed, that he would begin potty training Jack the next morning, he asked for the synopsis. So, I cracked it open again, and (in between elbowing him awake) I read it aloud. When I realised he was asleep for the night, I turned to my highlighter and sticky tabs, and with a mind and a drive I haven’t had since my college days, I got to work gleaning all the most pertinent  information that I could (Christmas gift #4—my mind back... if just for a time).

“No. I didn’t have time to read the book” (was his response). “I can’t do this anymore today. It is his naptime, and I am exhausted from too little sleep and cleaning up pee. I’m putting a diaper back on him.”

 At this, I shot out of bed. (Did you catch that? I shot out of bed. Without coffee. After being awake for less than 5 minutes. Okay—just making sure you got that!) “No!” I said, “he can’t go to bed without having been successful! I’ll show you what to do, just please, don’t give up.” But Matt wasn’t exaggerating when he said he was tired and done, and so (get ready for this...) I sent him to nap while I, Kate, proceeded to carry out potty boot camp for the next hour and a half. (Christmas gift #5: being the one to potty train my own son!!) After both boys got up from their naps we all carried on with the training. The next day went fairly similar to the first, wherein I fully expected to be of no help out of my need to recuperate from the past two days...but somehow I did just fine.

Christmas came, and I was able to attend both Matt’s family’s celebration and my own. A month ago I would have told you I wasn’t sure if I would make it out for Christmas Eve with the in-laws out of anxiety over the crowd and fear of my own physical restrictions. Not only did I get to celebrate (with only a brief respite in bed); but I was up at 8:45am the next morning to open presents with Jack! Christmas presents number 6 and 7! The miracles just don’t stop. But my energy did. It finally ran out for good (meaning, I have been experiencing that hit-by-a-truck, sleeping 21 hours a day)starting two days ago.

Mama and Jack on Christmas Morning

One last Christmas miracle that I have to tell of: when we returned home on Christmas Eve from Matt’s parents’ home, as I was getting ready for bed there was a knock at our door. At first we almost didn’t hear it. But they knocked again, and Matt answered it. It was two friends that we had yet to meet (is anyone really a stranger?); they had come to deliver the “gift of time” in the form of homemade meals. Now, for the remainder of the time that Matt is home on Christmas break, he won’t be spending it thinking up or preparing dinner, because our nameless angels did that for him. I don’t know if they read this blog, or if this thank-you will ever get to them. But I hope they feel the blessings from the prayers we say for them each night.

We hope you all had a very Merry Christmas, and look forward to a New Year full of new life in its many forms; happiness; and health for you and your loved ones! We plan on starting off the New Year right: by celebrating our 4th wedding anniversary (on January 3rd)! I could write another entire blog about how blessed I am to have my Matt; but I will save that for another time :) Please pray for us as we journey ahead into a new year of marriage and life! We are praying for you as well.

Blessings and love,

Kate

“For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counselor, The mighty God, The everlasting Father, The Prince of Peace.”

Isaiah 9:6

"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him"

1 Corinthians 2:9

Growing Pains

I am in the middle of a herx, again. It started last week (two weeks ago?) with Cranio Sacral therapy, which plastered me so flat to my bed, so hard, that I almost couldn’t get up to pee.  I initially went for the therapy (which is like Chiropractic care for your muscles, through gentle, guided massage) to get some pain relief from my muscles being all bunched up due to the way I’m propped up in bed. But my body had different plans, and instead the facia gave way in my abdomen rather than in my back, and I had so many releases and things moving back into place that I became toxic from all the movement (Lyme toxins love to hide in the intestinal tract). I became more ill than I have been in a very long time. So much so, I had to miss my godson’s baby shower that I had helped plan (albeit from bed) for months!

 I am now able to sit propped up in bed again, but I have been so tired, and lacking motivation to do anything (who lacks motivation to watch TV?? Honestly.)  This could be an answer to prayer and a sign of healing (less OCD keeping me up at night; more fatigue to help me sleep off this illness); I could just be herxing so badly I can’t even stay awake through it. My joints are twitchy and distorted again, so I know it’s bad. Starting a new medication last week probably didn’t do me any favours in recovering from Cranial; in retrospect, if I am going for muscle therapy, I should at a “quieter” time in my treatment plan. The oxygen I am supposed to start up on again (and am terrified to because of the seizures last time) we will wait on for a bit.

In other news, my mom requested a healing mass be said for me. A wheelchair was rented so that I could manage sitting up (and by “up” I mean at an incline), as I can’t really sit up for very long at all, let alone on a hard surface like a pew. It was the first time I had attended mass in almost a year. And it was a very overwhelming experience, in so many ways.

When we arrived, I felt like my chest was going to EXPLODE. I took an anti-anxiety pill on our way to the church, and even though it had kicked in by the time we got there, it didn't seem to help. I felt so conflicted. On one hand, I was SO happy to see all the people that I love and miss dearly; and on the other-- so, SO anxious, I could hardly look anyone in the eye. Any time someone did come up to me I was so touched that they were all I could seem to do was cry.

Right before mass, Jack asked to sit on my lap. There aren’t very many opportunities that I get to “hold” my baby, or care for him. And for anyone who knows him, he is such a busy boy, I was a bit nervous his wiggles would be too painful or too exhausting for me. I welcomed the opportunity anyway. And miracle of all miracles, he sat there, leaning back against me, for almost the entire time. Having the weight of his little body lean into me felt like he was holding me together; keeping me from bursting from the anxiety buzzing inside.

It wasn’t until I received the Eucharist that I received the peace I so desperately needed; dumped on my soul like a heap of snow. An insurmountable sense of gratitude filled my heart... more than I have felt this entire illness; remarkably, in part, for my illness.  And all I could pray, over and over again, was “thank-You.”

And though my anxiety returned with the crowd, the gratitude stayed with me. I have realized over the week, positive changes I had yet to be grateful for. As much as I have felt my life has been put on hold, or that I have, neither is true. All along, lying in bed, God has been working on my heart. Changes have, and are, being made; changes I wouldn’t reverse for the world.

For example, I used to strive so hard for perfection and to keep up appearances. It was more important to me that I have a clean house and scheduled company (and that I did it on my own—no help necessary!), than to foster community. Again, my vanity got in the way for most of my teenage and adult life. I wouldn’t go anywhere without make-up on; and because of such, missed out on opportunities to be gracious, and loving, or just plain experience life. 

Along with my perfectionism and vanity came a fear of being alone. I was so scared to be without company or something to do; afraid of being alone with my thoughts; afraid to get to know who I really was. Afraid of being bored.  And in all of this, I have also learned by laying down my perfectionism (to a degree), and vanity, and pride, came the ability—bit by bit—to ask for help from others. Because you can imagine how being sick doesn’t afford one any of the above luxuries. I couldn’t clean my house if I wanted to. By the time I have mustered up the energy to put make-up on, I am usually too tired to go out. And not being able to leave the house my room most of the time doesn’t allow me the best social life.

Now, all of these “issues” are rooted in pride. And believe me; I have a long ways to go in the pride department before God is finished with me. But I have to say: I am genuinely grateful for the cross He has given me in this illness, because He knew catching me while I was “on pause” would yield the greatest results. He has been working on freeing me of the sins and the walls that held me down and kept me from being me for so much of my life; and that kind of stuff doesn’t just happen overnight. The gift of being comfortable in my own skin...learning how to love myself and my life that I might better love others in theirs.

Next up: feeling comfortable in a wheelchair in public. Because that is one I just can’t  quite shake the feeling of eyes being on me for.

So, even though I may not like you for it: the next time I am down, please remind me that I am not wasting my time here; that I am not “on hold” or “in between” or anything less than the amazing things that God is doing in me. This is my growing time. And growing hurts.

Blessings and love,

Kate

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