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 :)