Today / Tomorrow

Is there anything tougher than disappointment? Well, probably… But disappointment – real profound, down to the depths of your soul disappointment – is a tough one. Disappointment sucks the life out of you and makes everything feel like it’s happening underwater. It makes you feel defeated. Tired. Like you just want to sit down for a while (or maybe forever).

Today, I received news about the MRI I had done at the end of last week – and the news was disappointing. The results show a new kind of arthritis in my spine.

My first reaction was to cry. My second reaction was to Google. I think I’ve moved on to stage three now… And stage three is really profound disappointment.

This whole day is feeling oddly reminiscent of the day I was officially diagnosed with fibromyalgia – when I knew something was wrong (and I had figured out what the ‘wrong’ thing likely was), but when the words were finally spoken out loud, they weighed a thousand pounds. The disappointment was thick. It sucked all the air out of the room and it sucked all of the fight out of me. It’s sucking all the fight out of me now.

But there is good news.

The good news is that I’ve been here before. I’VE LIVED THROUGH THIS DAY. And so I know that it’s okay to sit, to cry, to stop fighting for a little while. Because I know that after today comes tomorrow (and then another tomorrow, and then a thousand more tomorrows). And tomorrow – whenever tomorrow happens – I’ll be able to find that part of me that is strong and resilient and brave and determined. That girl is AWESOME. And that girl will fight like hell to navigate this news and be as healthy as she can be for as long as she can be.

That girl feels so far away today. But I know that I’ll find her again SOON.

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Good Morning

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Briony & I decided that we are going to wake up 15 minutes earlier on weekday mornings and do yoga together. Today was Day 1. She was PUMPED. And I cried like a crazy person during our practice because I can’t even tell you how happy I am to be doing this with her.

I remember being in a yoga class in my early 20s with a mom and her teenage daughter who came every week – wishing in my heart that someday that might be me with my daughter, but knowing in my brain that it probably wouldn’t happen (thanks to my life-destroying collection of chronic illnesses).

But IT IS HAPPENING. It happened TODAY. It happened TODAY with sunshine streaming in through the windows and my glorious miracle of a baby girl on the bright pink mat beside me. And I can’t think of a better way to start today.

Playing Big

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I’ve known since I was pretty young that I was destined to live a big life. Not Hollywood big… Not move to the other side of the world big… Not have eleven children big… But something full and rich and brave. I had no idea what that meant or what that looked like – just that my comfort zone was not big and brave. My comfort zone is small and comfortable.

I’m still not sure that I know that I know what it means. But I still believe that it’s true.

Lately, it seems like I’ve been reading lots of blog posts and social media updates from people who feel they are being called to live smaller – and it’s making me more sure than ever that I’m called to do something different.

There are small moments and spaces in my life, to be sure. My home life with Geoff and Briony is deliciously simple – and I absolutely love it that way. And we were clearly meant to be a family of three, which is small by any definition (most particularly, as defined by the people who determine ‘family rates’ for things… we are apparently not a legitimate family?!). But whenever there are plans to be made or decisions to be pursued, we are constantly and consistently pointed in the direction of things that are big and brave.

I saw it on my own in Grade 12, when I was offered a full scholarship to a small Bible college just a few miles away from home – but I knew in my heart of hearts that I was meant to pursue my education somewhere bigger, somewhere farther away, somewhere that pushed and expanded and scared me a little bit.

I felt it when we were newlyweds, when the Plastic Stick of Destiny said that I was pregnant – years before we’d planned to start a family. It felt like it was too soon, like it was going to be too hard, like it was the worst possible timing. And it stretched us and pushed us into a brave new chapter long before we thought we were ready.

I’ve seen it in my career, where I fought to be small and run a part-time freelance business from home. I clung to it, for longer than I should have – because I knew that it was only for a season and that the season had passed. God pushed me to go back to work… And then he pushed me to pursue a path that has me running the marketing department for a large national retail company. Kind of the opposite of working part-time from home. Kind of the opposite of small. Kind of the opposite of quiet and safe and easy.

I’ve experienced it in our family, when Geoff & I felt so strongly about staying in our little starter home and renovating a little bit to make it work. Today, I’m writing this from the office in our ridiculous new forever home – a home that is literally double the size of the home we were happy in just six months ago.

In every moment where there’s a small choice and a big choice, He’s guiding us to the big one. And I don’t believe that He’s finished with us yet. He has plans for us. I have no idea how all of these pieces fit together or where we’re going to end up – but it’s sure been an interesting ride.

I’m Still Here

Wow. It’s been quiet over here. I’ve been so busy living my life that I ran out of time to talk about it. And I think that’s pretty okay.

Today needs a blog post, though – I need to process some stuff and I love sharing my little victories in this space (it balances out all the bad stuff, I think). See, today was my annual visit with my rheumatologist. Once a year, I get all stressed out knowing that this is coming. It freaks me out because it’s really a one time shot at developing a plan for how to tackle my life for the next 365 days. Sometimes it goes well and it’s an encouragement that sets me up to feel like I can fight my way around the sun one more time. Sometimes it doesn’t and it’s devastating because I don’t really get another chance until next year.

Last year, if you’ll recall, it didn’t go well. There was weeping and mourning and gnashing of teeth. The doctor was in a hurry, I didn’t feel heard, and I sat in a pit of despair for a few days (read: WEEKS) trying to figure out what to do.

Today, it did. All the stars aligned and my doctor was unhurried and attentive and we have a great talk about how I’m doing – how I’m REALLY doing. I really feel like I need to document and share some of the things I took away from our conversation, so they’re here to read when I need them:

  • I’M DOING GREAT. Great doesn’t look like being totally healthy. Great looks like working full time, being happily married, and having my kid think I’m a good mom. Great isn’t GOOD ENOUGH – but it’s still something to celebrate.
  • I’M ON THE RIGHT TRACK, MED-WISE. He really applauded the fact that I’ve been as sick as I am for as long as I’ve been without resorting to really nasty narcotics. He said that he sees so many people who are sick like me but are throwing their lives away because they’ve gotten addicted to narcotics – and while some of those drugs might help me control my pain better, they can take away more than they give. I could be living with less pain… But living with less LIFE. And I make the right choice every single day.
  • IT’S ALL IN MY HEAD. Really. I’ve been dealing with what I assumed was a massive arthritis flare this week… But there’s virtually no trace of inflammation in my body right now. Which means that – while I still have mild rheumatoid arthritis – we’re primarily dealing with fibro at this point. That sucks because arthritis is infinitely more treatable. It doesn’t suck because – as brutal as this pain is – I’m actually not damaging my joints. It’s just my brain effing up its pain signals in a major way, dialing 911 when there’s no fire. What a crazy disease, you guys.
  • I’M DOING EVERYTHING I CAN DO. I’m awesome at being a fibro patient. He was totally intrigued by the work I’ve done with yoga certified physiotherapists and my stint with that insane Chinese acupuncture doctor. We talked about everything I’m doing right – and it’s A LOT. He emphasized that if he had to make a list of what he WISHES all his fibro patients did to try to help themselves, I’d have every box checked. It sucks that I can’t do more… But instead of pouting about the fact that I can’t run 5K every day anymore (and honestly, I do pout about that – a lot), I need to celebrate every time I’m able to walk around the block or do 5 minutes of yoga at home. That’s a mental shift that’s tough for me. REALLY TOUGH. But I know he’s right. I need to hold myself to a standard of fibromyalgia, not a standard of normal people. I’m really freaking sick. I forget that all the time.
  • I GOT MY PRESCRIPTION. There’s a med that was working pretty well for me a few years ago, but the doctor who prescribed it to me left the province – and I haven’t been able to find another doctor who will write it for me (it’s a really restricted triplicate prescription – and no, you really don’t want to know what I have to pay out of pocket for those precious, precious pills). He’s writing it for me. It’s kind of a game changer. I didn’t take it every day, but it definitely helped me through my flares and I can’t wait to see if it still works for me. Unfortunately, it may be a two week wait to get it processed. But it’s HOPE.
  • THEY’RE REALLY GAINING MOMENTUM ON FIBRO RESEARCH. He’s doing some really fascinating work with rheumatologists all over the world who see fibro patients and there’s some major research coming in the next few years. That is so exciting. I actually ugly cried about it this afternoon. Fibro research has been – for the most part – actually kind of pathetic, and to know that some of the best researchers in the world are on it now? That’s unicorn glitter hearts and fairies level magic, my friends.
  • THERE IS HOPE AND A REASON TO KEEP ON. More research is coming. More research eventually means new, better, and more effective treatments. I’m only 34 years old… If I can just hang on and keep doing what I’m doing, I’ll be the one to benefit the most when those breakthroughs come – big and small – because I’ll have a life that’s SO WORTH SAVING.

So that’s it. HOPE. HOPE and a hell of a lot of pain, after two hours of being poked and prodded and otherwise tortured. But mostly HOPE.

A New Season

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Spring is here in Winnipeg – and our family is beginning a new season in so many ways. My mother-in-law is here with us for the spring & summer. Briony is wrapping up Grade 1 and all the activities that she’s been enjoying this year (plus spring soccer!). We’re three drafts into home reno planning. And I chose to pursue an opportunity at work that has meant the end of my ‘work from home’ days.

They are GOOD changes. All of them. But I sometimes catch myself feeling a little bit anxious because I’ve never been a fan of change for any reason. Geoff recognizes that look on my face by now – and he’ll just give me a hug and repeat some variation on ‘you’re awesome, this is awesome, it’s all going to be awesome, and you’ll do an awesome job because you’re so full of awesome you can only be awesome.’ I LOVE HIM SO MUCH. These flowers are currently sitting my our dining room table, as a reminder and tribute to my awesomeness.

We’ve got this.

Lucky Girl

Tonight, I’ve been getting our tax stuff ready and adding up all the $$$ we spent on kid dance classes and kid soccer and kid swimming and kid school and just generally ALL OF THE KID THINGS – and then daycare for the kid while we’re at work earning money to pay for ALL OF THE KID THINGS listed earlier in this sentence.

And you know what? It makes me feel really, really lucky. Lucky to have a (kind of expensive) kid. Lucky that Geoff & I both have jobs that we love, with some built in flexibility to get to spend time with our kid – when she has time for us, of course. Lucky to be living this life.

IT’S ALL GOOD.

(Now, it will be even better if I manage a refund for the first time in FOREVER…)

Grace

Briony forgot her report card at school yesterday. We realized this post-daycare, pre-dinner and it was far too late to do anything about it…

She learned to double check her backpack before she leaves for the day. I learned that my child is lacking practice in making mistakes.

Briony was absolutely beside herself. She announced that she would not be smiling until the problem was fixed (and she stuck to that all of yesterday evening and all of this morning). She refused to eat dinner at the table with me and banished herself to her little table facing the wall. She put herself to bed early, and chose to sleep on the floor instead of in her bed. This morning, she ate alone again – and then she added a dark cardigan over her dress (and buttoned it all the way up) because she thought she didn’t deserve to wear a happy print. I COULDN’T MAKE THIS STUFF UP. I also couldn’t cheer her up. And believe me, I tried.

She made me cry. We are so hard on ourselves, from such a young age.

But what a gift to be able to teach my daughter about grace – about making mistakes and how that feels, but then about owning the mistake, fixing what you can, forgiving yourself, and moving on. The words had a funny taste as they left my mouth because I know that I probably needed the reminder too. There is, after all, a reason why I chose the word GRACE for the only permanent tattoo on my body. I knew that I’d need a lifetime of reminders.

PS – It was all fixed with a quick phone call to her teacher this morning. (Don’t you wish that adult sized mistakes were so easily remedied?)

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When Life Knocks You Down

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Unless you’re new around here, you know that – since Briony was around 18 months old – I’ve been having mysterious neurological complications from my fibromyalgia. At least, that’s the working definition of what’s going on, according to my specialists, after many, many, many tests including brain scans, nerve conductivity tests, and more.

This issue manifests itself differently all the time, but the two biggest factors in play are that I sometimes fall and I sometimes drop things. It’s like my brain sends a funky message that tells one of my limbs to play dead – without enough warning to do anything to stop it. No one knows why, so no one knows how to stop it. It usually just happens once every two to three months. But it’s a big enough deal that it’s the number one reason why we chose not to have another child (before I developed PCOS and endometriosis and discovered that it probably wouldn’t have ever happened anyway). It’s also the number one reason why I live life attached to my iPhone – so I can call someone for help if I ever manage to really hurt myself. It’s a deeply messed up kind of normal for us.

The short story is that I don’t know when it’s going to happen. But I’m starting to be able to tell when I’m most at risk for it to happen, based on what I guess is most easily described as a subtle electrical feeling in my arms and legs. Based on that clue, I’ve known since last week Wednesday that I was more likely than usual to fall.

It finally happened today.

It was almost a relief because I’ve been living in fear of it for almost a week, waiting and wondering when and where and if it was going to happen. It can make me a little bit crazy. Mercifully, it happened at home this time – with no witnesses, nothing in my hands, and nothing dangerous around me. I didn’t hurt anyone (my worst fear). I didn’t humiliate myself in front of an audience (a close second).

But let me tell you, there can’t be a lot of things in the world more frustrating than finding yourself on the floor and knowing that it wasn’t your fault – it happened simply because you have a brain that occasionally turns evil and betrays you. I lay there for a minute and said a few of my favourite four letter words (okay, fine… just one of them – over and over and over again). Then I picked myself back up, finished making dinner, and took Briony to dance class.

She’s in bed now and I finally have a second to assess the damage. I’m nursing a sore spine, a bruised shoulder, and what I’m hoping are three sprained and not broken toes. All things considered, NOT TOO BAD.

I’m not exactly sure what the point of telling you all this was. It feels better to talk about it, to make sure that it’s not a secret. For me, putting words to something strips out some of the fear that’s attached to it. And I think it’s important for the people in my life to know what a day with my particular little collection of chronic illnesses can look like.

So, now you know.

Courage

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I’m not too proud to admit that I have no idea what’s going on with my health lately. This level of pain is not new, but the length of time it’s sticking around sure is. Same with my fatigue. I’ve felt this before, but never for months on end. And I’m struggling to know how to express that to the people around me without sounding like a whiner, a quitter, or a crazy person.

It’s so frustrating.

I’ve had days over the past five months when I’ve dreamed of giving up. Not GIVING UP… Never GIVING UP. But staying in bed and just staring up at my ceiling until it feels better or until I feel stronger, however long that takes.

But I never do. Because there’s always a voice deep inside of me – quiet, but steady and always there – that tells me to keep going. And even when it’s terrifying, when I know that I need to take one more step but I have no idea where on earth the strength to take that step is going to come from, I always manage to do it. And then the step after that… And then the step after that… Until it’s the end of the day and I’ve made it through again.

And one of these days, I’m going to wake up and feel the sun on my face and wiggle my toes and know that it’s going to be a better day than yesterday was. And then I’ll string a few of those days together. And then I’ll get myself back to my (sick) normal, where I know how to function and thrive.

Until then, one step at a time is okay – as long as I keep going.

“Courage. We all suffer. KEEP GOING.” – Graeme Fife

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We’ve been VERY LUCKY to have a healthy kid. It’s not something I expected and it’s not something I will ever take for granted.

Here’s the evidence:

  • I’ve been at the ER with her a grand total of ONE TIME. Granted, I needed to call an ambulance to get her there and it was hella scary. But that’s been it.
  • Her pediatrician jokes that we’re either her best patient or her worst, because we are basically never there expect for scheduled check-ups.
  • Since Briony started real-ish school two and a half years ago, she’d missed a grand total of 1/2 day in Nursery and about 90 minutes in Grade One (when I got called to pick her up because she’d become sick during the day). That’s it. That’s all. Of course, she’s missed more school due to travel – but in terms of illness, that’s the grand total.

Impressive, right? Well, we seem to have broke our winning streak this week.

Briony had a stomach bug on Sunday morning. She seemed okay after lunchtime, but we kept her home all day on Monday just to be super sure that we wouldn’t be spreading those germs around. She was thrilled to go back to school on Tuesday – which was good, because I woke up running a fever and dealing with a sore throat and a stuffed up head and appreciated the quiet house while I slogged through a sick work from home day. It was all good until I got a call from the school to come pick up my sick kid, who was running a fever and complaining of a sore throat and a stuffed up head. OY. And she’s been at home ever since – a grand total of 3+ sick days this week (and counting).

She’s not crazy sick, just sick enough that we shouldn’t be sending her to school. But this whole thing where we’re rearranging our work schedules and making judgment calls and trading off working and taking care of our sick kiddo (and worrying about her while we’re at work) is so foreign. It makes me realize for the millionth time how lucky we’ve been.

A sick kid + two working parents is BANANAS. B-A-N-A-N-A-S. Hopefully after this week, the universe will gift us a bit of a break for, say, another 3.5 years. Is that too much to ask?