Reading, Watching, Listening, and Eating

It’s time for a post that is more interesting than my health chaos.

Reading

I like books. I remember as a kid I’d go to the library, come home with a stack of books, sit down and read all day. Nothing better really. However, sometimes reading in the middle of the day seems like a guilty pleasure, as if I should be doing something else. But this year, I’m abandoning the “shoulds” and fully subscribing to the “wants”. I’m an adult, surely reading in the middle of the afternoon is one of the few earned pleasures of making it this far without screwing up too much. So, here’s what I’ve read and what I’d like to read. Note, I’m a slow reader so please be patient with the disparity in the two lists.

So far this year in 2018, I’ve read:

  • The Crown: The Official Companion, Volume 1 by Robert Lacey. I thoroughly enjoyed this book. It took me a long time to read it but I felt I couldn’t rush through as I needed to absorb all the historical facts that somehow were missed in my many years of education. If you’re a fan of The Crown on Netflix or would just like to learn more about an important era – this is for you.
  • All We Leave Behind by Carol Off. This was a heavy heavy read. It pulled on my brain making me think hard about the destruction governments such as ours somehow justify. There was again so much history and key information in this book that I had to read it slowly. I also found reading about war and the real people involved in this harshness did not make for good bedtime reading. I’m torn on Carol Off’s decision, but this is exactly why she wrote the book, she is also torn on what is right/wrong as her role as journalist and compassionate human being. One paragraph stood out for me (not word-by-word but as I remember it), “When Asad and his family arrived in Hamilton, ON they were shocked. Shocked that in a country as rich as Canada, there would be people living on the streets – homeless with no one looking after them.” Please read this book, I think so many of us are unaware of what is happening on the ground in Afghanistan (and beyond) and why it’s happening.
  • After You and Still Me by Jojo Meyes. After two heavy books in a row, I decided to read some lighter fare. These two books by Jojo Meyes are the follow-on to Me Before You. Good writing. Engaging characters. Moments that generate a pause. Some subtle commentary on human decency. Thinking about what is important. If you’re looking for something that is cloaked in “lightness” but provides more, I recommend the three books. Start with Me Before You and then read them in order.
  • Wreckage by Emily Bleeker. I’m currently reading this. I’m trying to like it. It’s kind of a mystery/thriller (not my chosen genre). I’m at the point where I just want the author to skip all the dribble and get to what happened. But I’ll stick with it.

On my to read list:

  • Educated by Tara Westover
  • Land of Lost Borders: Out of Bounds on the Silk Road by Kate Harris
  • Long Haul: A Trucker’s Tales of Life on the Road by Finn Hales
  • Tears of Salt: A Doctor’s Story by Pietro Bartolo and Lidia Tilotta
  • My Journey from Death to Recovery and the Redemptive Power of Hope by Rana Awdish
  • Dunkirk: The History Behind the Major Motion Picture by Joshua Levine

Watching

I like to think that I don’t watch much in the way of television shows and movies, but then I’d be telling a half-truth. I watch and I like it. Primarily I watch shows on Netflix when I’m riding my bike. However, lately as I’ve been dealing with what feels like insurmountable fatigue, I’ve found myself on more weekend afternoons than I’d like to admit, flaked out watching something on Netflix. Such is life. I could nap instead, but frankly, I don’t nap. Napping only happens when I stretch out on the couch with my favorite quilt, a very warm black cat, and a carefully chosen program on Netflix – then I take an adult version of a nap.

If you find yourself in need of an adult nap or just want something to watch, here you go:

  • Broadchurch. Hooray for the third season.
  • Everest. What a film.
  • Restless Creature. Wendy Whelan gives us a look at what passion really is.
  • The Bridge. Seriously, how good is this series?
  • Top Chef. Can’t help it. I have to watch it.
  • Grey’s Anatomy. I watch in the name of research for my upcoming hospital stay. Okay, maybe a half-truth.
  • Molly’s Game. Very good movie.
  • Three Billboards. Wow. Wow. Wow.
  • All The Money in the World. Enlightening.
  • This Is It. For the Michael Jackson fans.
  • On Yoga. Interesting look at yoga from an interesting dude.
  • London Has Fallen. Yes, a weak moment. But it did it’s job. I was entertained.
  • Patriot’s Day. Okay it kept on showing up in my list. So I watched it. I liked it.
  • The Darkest Hour. A good film. But I felt I lacked the historical knowledge to really “get it”.
  • Kill the Messenger. Based on a true story. Worth watching to help understand what is and isn’t reported.

Okay, I was going to include lists for the Listening and Eating categories, but this post is too long now. I’m even getting a bit bored. So I’ll save that for another day.

If you have any recommendations for any of the categories: Reading, Watching, Listening, or Eating – let me know.

Never A Dull Moment

Well, at least life is remaining exciting (challenging) with the twists, turns, and curveballs it sends my way.

I spent 14 hours at the ER on Thursday. Arrived at 4:30 a.m. Left at 6:30 p.m.

I avoid the ER as much as possible but sometimes the pain can’t be ignored. Terrible stomach pains convinced me to wake up Marc and to go out in public in my pyjamas on Thursday morning.

At the end of it all, I really did experience all levels of humanity. I heard and saw things I’ve never anticipated. I witnessed people treating doctors and nurses very poorly. I saw the kindness in people who realize that there is someone feeling worse than them. I experienced the very short tolerance people have for waiting. I heard yelling, threats, and foul language – all directed at the nurses and doctors. Shocking really.

I neglected to bring my Kindle with me on Thursday morning, thinking I wouldn’t be there very long. But frankly, I was in no condition to read and I didn’t need the Kindle to pass the time – there were enough fascinating/shocking people to do this for me.

Blood work, CT scans, surgical team consult, GI team consult, and more blood work. At the end of it, no one is sure what is causing my ridiculous stomach pain – likely a combination of a worsening diversion colitis flare and the impacts of the Prednisone taper. The body is so super complicated.

Turns out I have to go back for more tests because the CT scan showed that my liver bile ducts are narrowing and scarred. Apparently this can be due to Primary Sclerosing Cholangitis (PSC). Turns out that people like me with ulcerative colitis are susceptible to this disease. It causes narrowing of the bile ducts which could eventually result in severe liver damage. Sigh. The good news is my liver enzymes are normal so this is a good thing.

The other fun twist to this crazed body of mine is that the arthritis pain is back. At least I had one good month free of the crazy joint pain. I’ve got a prescription for strong pain killers – I use these when the joint pain and/or stomach pain is too much. Fun.

So yeah, lots of excitement here.

 

Control the Controllables

My surgery has been cancelled/postponed.

Turns out that I can’t have massive surgery while on Prednisone. Prednisone inhibits inflammation, which in-turn inhibits healing.

The biggest risk factor with this surgery is not healing properly.

So – no surgery on Feb. 9.

The surgeon I saw on Thursday said that they’ll try to get me in for surgery in the middle of April. By then I’ll have finished the Prednisone taper and have had a couple of weeks to recover from any taper side effects.

Thursday afternoon was very very hard. I cried a lot. But I understand the decision. I appreciate that the surgical team are doing everything they can to make sure I’m as ready as possible for the surgery.

I was listening to the Morning Shakeout podcast on Thursday while walking to and from yoga – this episode featured an interview with Des Linden, a top American marathoner. She said something that struck a chord while I was walking and it is still making a lot of sense:

“Control the controllables.”

She said this in reference to how she approaches her training, racing, recovery, and life in general. I like it. I’m borrowing it.

This is exactly what the surgical team is doing – controlling the controllables. And this is all I can do – get myself as healthy (physically and mentally) as possible to be ready for an April surgery date.

 

Good News

I don’t know what I believe in but I do believe that there is some kind of higher power out there keeping watch. I don’t know how it all works, I just know that it’s important to have some kind of faith and to believe in something. So I do.

I remember when I was in grade 12 and had a car accident – I managed to roll my dad’s car on a gravel road. My friend and I were left dangling upside down in the car, strapped in by our seatbelts (thank goodness we were wearing those) in a farmer’s field literally in the middle-of-nowhere northern Saskatchewan. We both walked away from the accident without a scratch – we were very lucky.

My dad said to me after that accident “someone was watching over you”. I didn’t think much of it at the time, but that comment really has left an impression.

Over the years I’ve thought about that someone who is watching when I’ve been dealing with injuries, illness, sadness, good fortune, and happiness.

On Monday it happened again. My phone rang and I received a life-changing phone call. In fact the phone call was over so quickly that I’ve been trying to replay its entirety over-and-over so I can remember every second of it, and to make sure that I gave the right answer to an all important question:

“Hi, I’m calling from the colorectal group. We’ve had a surgery cancellation for Friday February 9th. Do you want this surgery date?”

Yes, this is the question I was asked. I was stunned. Of course I said yes. So now I have a surgery date. I don’t know the time or even the hospital. I’m waiting for the next phone call and pre-op assessment.

Yesterday was a blur. Calling a few people, talking to my colleagues, planning out my work schedule, and really just trying to stop grinning. Most people might not get excited about surgery, but well, I’m a bit different.

This start of 2018 has been tough. The joint pain and the constant bleeding have been a lot. In the past two weeks I’ve had five medical appointments, seeing various doctors and giving up lots of blood for tests. On Thursday, I’ve got an appointment with one of the surgeons on the colorectal surgical group team – this was scheduled a few weeks ago to discuss my surgery options.

Some more good news is that I’ve learned more about the intense joint pain I’ve been dealing with since November. Turns out it’s called enteropathic arthritis due to ulcerative colitis. I saw a rheumatologist on Friday (again someone was keeping an eye – this appointment was originally scheduled for April 3 – but again a cancellation and I was called). The good news about this arthritis is that it should go away once I have the surgery. Relief. This joint pain has been the worst pain I’ve ever experienced – at times it has been so severe that I really thought I was crazy.

So yeah, good news. February 9th. A big day. I’m looking forward to lies ahead. Thanks to that someone who is keeping an eye – I’ll try to do the same.

Good-Bye 2017

It’s just a bit after 12:00 p.m on December 31, 2017. I sit here patiently waiting for time to pass. Calvin is stretched out on the table (yes, a cat on the table). We’re waiting for a very special arrival today.

Not only is it the end of a not-partitcularly-fantastic year, it’s also the best day of the year – Marc comes home today from Belgium. As happy as I am for him to spend six weeks or more in Belgium racing and training – I do relish his return.

2017 was not fantastic. It wasn’t utterly horrible. But it really wasn’t great. Yes, there were many special days and moments, but these were overshadowed by persistent challenges.

The undercurrents to our year were my ongoing battles with health and Marc’s recovery from a concussion suffered on January 3, 2017. These two constants were with us everywhere we went. We’re very fortunate, Marc is 99% recovered from his concussion (we are lucky) – but the post-concussion symptoms will always be there.

More days than not, I was awash in a feeling of  “life sucks and then you die”. My commitment is to push this pessimism (some may call realism) to the far corners of my brain. We are lucky. So very lucky. No one is bombing us. The fridge is full. We are safe. We are loved.

I’m happy to welcome 2018 and put the losses, sadness, doubt, and fear behind us. Marc will be home in a couple of hours. Can’t hardly wait.

Broken Body

I’m not writing this for empathy or sympathy. I need to write because this is my therapy. The longer I keep these thoughts inside, the harder it gets. This might not make sense to you, but this is the way it is. If you’re tired of reading about my broken body and health struggles, then stop reading now. This will not be uplifting or have a positive message at the end. It is what it is.

I look great these days. I look fit. I know this because my friends have been telling me how great I look. This is nice and I really appreciate it. The truth is, I don’t feel great. What you see on the outside is lie.

I feel the opposite of great. With each passing day, my body feels more and more broken. The joint pain that started in early November has not dissipated. I’ve had about five pain-free days since the onset. Yes, five. This is not an exaggeration.

The pain just happens. It doesn’t matter if it’s raining, snowing, windy, or freezing cold outside. It doesn’t matter if I’ve ridden my bike for one hour easy, three hours hard, or taken a rest day. It doesn’t matter if I’ve done yoga or not. It doesn’t matter if I eat super healthy or indulge in my favorites of ice cream, peanut butter, and chocolate.

It simply doesn’t matter what I do or don’t do. The pain is going to make itself known. Sometimes I wake up pain free and the pain builds gradually through-out the day. It might come in my knees, left elbow, fingers on my right hand, right hip, feet, or wrists. Other times I wake up in the middle of the night realizing I can’t bend my knees or use my fingers without searing pain. And other times the pain arrives and simply doesn’t go away.

It’s ever present. A reminder that you can never get too comfortable or take anything for granted.

Even on the days that I’ve been spared the pain, the threat is there. Lingering. Sitting on my shoulder whispering in my ear of an inevitable return. And no manner of positive thought will keep this devil at bay.

So what can I do? What haven’t I done? I’ve been to two doctors. I’m waiting for referrals to specialists and clinics. I’m eating Tylenol like it is Halloween candy. I’m trying not to let it get me down. I’m doing everything I can think of. I wait and trust my doctors that they’ll figure this out. I wonder if it’s something really horribly bad. But then I tell myself to push these fears away.

Of course to add an extra layer of salt to the situation, there is the flare and the bleeding. This is still ongoing. This part of my body has become a science experiment. Try one medication – it fails – try this one – it fails – and keep on trying. Until there is nothing left. Surgery – yes this what I need. But the waiting list is long. Two years I was told on Monday. So I wait. I hope that my ass doesn’t explode in a bloody mess when I’m out in public. No I’m not exaggerating. This is my reality.

This is it. Sometimes I ask myself how and why I was chosen for this. How was I picked to carry this burden. I didn’t ask for this. I’d like to know why.

I do everything I’m told to do – and this is my reward.

 

Back in Belgium

Oh geez, it feels so good to be back in Belgium. I missed this place. There is something so special about this country. It’s hard to put my finger on one thing that makes Belgium so special – suffice it to say I really enjoy it here.

I have to extend many many thanks to Nick and Romina for letting me stay at their place. It is super awesome how they have opened their home to Marc for these past two years and now have let me stay as well. We really do appreciate it.

Oh, and did you see this?

23795090_10154884652691244_3859395352264818539_n

Yes – it is a brand new shiny red disc-braked cyclocross bike. I took it out on the Lichtaart course today – wow – what a difference. I was riding corners faster than normal. I didn’t touch my front brake once. It feels super agile. Many thanks to Nick for setting me up with this sweet ride.

The only disappointing aspect of this trip to Belgium is – no racing for me. I haven’t been able to get rid of my joint pain. I can manage riding but any running, sprinting, or standing to accelerate is a problem. This is disappointing since I had been planning to race at Mol at the Masters World Cyclocross Championships – but this is not going to happen.

The good news is the races aren’t going anywhere. The extra good news is I’ll be able to come back next year stronger than I am this year. So a couple of silver linings.

It would have been very easy to get down about the joint pain and flare (and believe me I did for a few days). However, I’ve got a lot of experience with chronic illness and I’ve gone through worse and I know that’s important to keep everything in perspective. There were many months when I couldn’t ride or travel at all – so I’ll take what I can get.

I’m feeling pretty fortunate to be here in Belgium for three weeks. A huge shout out to KNOW Agency for supporting this trip. It really is quite special to work for people who trust that I’ll get my work done and will let me work from where I want on my own hours.

Here are a few more pics from my first few days in Belgium: