Thursday, 10 May 2018

Living with Lyme

Life is busy lately. Busier than usual. Busy in a way that makes Rich sicker, because too much activity and stress is bad for him. His short-term memory has declined again (example: during dinner last night he couldn't remember a phone conversation he had that very morning 😖), his constant shoulder pain is back more severely than it has been in months, and his energy levels are very low.
What I've been afraid of, and what Rich optimistically disregard for as long as he could, is that Lyme Disease won't leave us any time soon. 
Over the last three weeks the carpenters are here every day to work on my cabin (formerly known as the She Shed), we've had guys knock on the door at 8 in the morning to buy sheep, we had a friend stay for 3 nights, people dropping by to look at the calves or the horses, neighbours visiting, and then Rich took off for 7 hours last Thursday and came back with her:
Meet Teddy, 16 weeks old (!!), the newest member of our family, who has already stolen our hearts (and a few of my shoes)


Ever since I saw the wolf paw prints on one of my hikes last winter, Rich has been looking for a big, fearless dog for me to take along when I hike in the mountains. There are bears, wolves, coyotes, cougars, and bobcats all around us, and I have to admit I often feel a bit uneasy when I'm out by myself. I always have Lily (the corgi) and Nina (the Blue Heeler) with me, but they're more snacks for a large predator than protectors. Teddy is a Å arplaninac, a Yugoslavian Shepherd Dog, and my future bodyguard. 

Rich can do these things again - driving 3 hours to look at a puppy, buy said puppy, and drive home - but not like he used to. He asked our neighbour to come with him to drive home (he did - they are the BEST neighbours ever!), because he knows he won't be able to drive 6 hours in one day. He also pays the price the day after, feeling sore, worn out and tired, and being in need of lots of extra rest.

But if there is something unexpected happening the next day, even if it's something fun like having friends come for a visit, then he can't rest the way he needs to, he gets more sore and more exhausted, and he starts forgetting simple words like lilac (we have two bushes next to the house that are starting to blossom) or the names of our friends.
Rich is sick of being sick, and so am I. These days he stays in bed till noon, sleeping or resting, before he has enough energy to go outside and feed his birds. I still do the morning chores, play with the puppy, and then work on the cabin or go to work.
Once he's outside, he usually spends a few hours (the weather has been beautiful!), but sometimes he will need to take a break and rest for a while in between. On good days he'll spend all afternoon outside, but come dinner time, he always, always needs to lie down afterwards, and usually falls asleep quickly.

Not knowing how to properly treat this disease is the worst. Having no idea if he will ever feel like he did before September is a close second. At this point we're trying to appreciate every good day, boost his immune system, and I try (but fail often) to be patient and understanding.

I'm determined to do everything I can to learn more about Lyme Disease, so I did a thing: I joined a research group dedicated to finding better ways to diagnose and treat Lyme. It's led by real scientists, it's a 4-year project, and there are T-cons (telephone conferences for those of you who haven't joined the big leagues) and time spent in the lab (not for me, thankfully) and research studies and a whole bunch more I don't know yet. I'm part of the patient advisory group, and our role is to give insight about what's most important to research from a patient's perspective.

My biggest wish is that there will be a vaccine in the future that can prevent Lyme Disease, but I don't know if that's a realistic possibility just yet. But just finding better ways to diagnose it would be a huge step into the right direction, and I'm truly excited to play a (very) small role in working towards making this happen.

In other news: our only direct route into Merritt has been cut off since Sunday night due to severe flooding of the only bridge that connects us to town. Here is a short video I took Sunday, about 5 hours before they closed the bridge:

It was closed for 2 days, and then yesterday they opened one lane for local residents, for which I was very grateful because we were running low on food.
This is what it was like crossing the bridge yesterday morning:


It got worse as the day progressed, so they closed the bridge again at 5pm and it's staying closed all day today. 
It usually takes 10 minutes to get from Lower Nicola (our tiny community) to Merritt. With the bridge closed (which, btw, is a highway bridge), there is an option to go the long way around - but the long way is over 200km long! One way! Not a great alternative.

So that's where we're currently at: cut off from town, which also means that Rich is most likely going to miss his doctor's appointment tomorrow, and with him feeling not so great. 

But then there's also this:
A hammock on my porch!!!! This makes me happier than I can say. 
Looks like you may find me in there tomorrow, instead of being at work - I guess it could be worse.

Despite the downsides, this is a very good season in my life, and I'm grateful for all the good stuff every day.
Stuff like this comment about my book: "What a great read, I thoroughly enjoy it. Kept me up way to late after me evening shifts. So proud of you." 
Or that one: "Enjoyed your book Miriam. Thank you for sharing your experiences. Brought back some long forgotten memories of village life in Austria. So glad you are enjoying living in one of my favourite areas of B.C."
Or the fact that Amazon only has 9 copies in stock (more coming!) and it hasn't even officially been released yet! Quite the unreal feeling. 
Only 26 days until the official release!!

Life is weird, exciting, challenging, beautiful, unpredictable, and oh so precious. I love it so much, despite the hard stuff. 

I hope you enjoy yours just as much!

xoxo Miriam



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4 comments

  1. I'm kindof thinking we have a BESTSELLER on our hands Miri! Yay!

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    1. Ha, I'm not sure about that yet - but it would be the dream!!

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  2. That’s so great that you’re partnering with the research group. I think you’re going to contribute a ton and help others. That would be wonderful if there can be great strides in diagnosing, treating, and even preventing the disease.

    I love your new dog and your hammock. Safe walks and summertime, here you come!

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    Replies
    1. The puppy is pretty fearless, I can't wait to take her on walks with me soon!

      And I'm really excited to work with these smart people towards finding solutions for Lyme Disease. I could have never foreseen that twist - life is truly full of surprises!

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