Monday, July 27, 2015

my broken heart

In 36 hours Dr. Roderick MacArthur of the University of Alberta Hospital will be cutting into  - or cracking open - my chest.

I'm more than scared. I'm stunned, I'm overwhelmed, I have difficulty breathing when I think of it. My whole body seems to tremble from the inside.

But it has to be done.

This is my relapsing polychondritis story.

Polychondritis is rare. Attacks on the heart aren't unheard of, but they are rarer still.

When I experienced heart failure at the end of April - after 18 months or so of fatigue, dizziness, shortness of breath, muscle weakness, depression and more - and the leaking aortic valve was finally discovered, I heard every day from one doctor or nurse or another that I was a "mystery". Even at this nationally-renowned teaching hospital, none of them had ever seen this before.

Because I don't have heart disease, per se. In fact, the angiogram I had on July 17th showed perfectly clear arteries, which is fantastic.

I have relapsing polychondritis, an autoimmune disease that is most easily compared to rheumatoid arthritis ... except that I don't have swollen joints or daily pain.

Relapsing polychondritis attacks cartilage, usually in the ears and face. I had two episodes like that; the first was in 2011, the second in 2014. The pain was intense, but once I received steroid treatment it faded. I believe, however, that the second episode never really ended, even if the pain did. I believe it continued, targeting my heart, inflaming the aortic and mitral valves until they were unable to pump blood properly and I ended up at the U of A emergency room around 2 am on April 30, 2015.

And now, on July 29th, the aortic valve will be replaced with a mechanical one. But that won't be the end of the story, because it won't solve the polychondritis problem.

I started receiving a monthly infusion of Actemra on the 14th of July, but we won't know if it's going to help for a few months. The idea is to find something that brings the inflammation down. Actemra is a new drug and there is nothing in the medical literature to tell us how effective it will be for me, particularly considering it's a rheumatoid arthritis drug.

In the meantime, I will be taking 50mg of Prednisone for the indefinite future and I'll get some new heart bits installed.

I'll be back when I can.

Friday, July 24, 2015

javascript for n00bs

Challenge: CRAZY Face

Made using: Khan Academy Computer Science.

It's not a smiley face, but it's a start. I've completed five per cent of Khan Academy's free Intro to JS: Drawing and Animation course and I've learned to draw rectangles (squares), ellipses (circles), and lines. I can move them around and I can size them however I like. Hence, the appearance of CRAZY Face.

Next I learn to color. Right up my alley.

the low maintenance me

I used to want to be loved. There was a time when I craved it, in fact. Sometimes that craving would lead to desperate acts that embarrass me now when I think of them.
My partner of five years has never said he loves me, and I don't expect he ever will. I don't need him to say it, though I tell him almost every day I love him.
I stopped wanting 'romance' when the relationship before this one ended.
It was in 2003, and he was married. Our breakup hurt so much I came to wish I'd never met him. For years afterwards I would fantasize he'd change his mind and come find me, sweeping me back into the life I'd dreamed of with him.
I came to my senses eventually, and met Sean. After six years or so of singlehood, I was in a balanced place. I liked myself and was content. I still do and I still am.

I understand how this must sound. It's natural to suspect something must be wrong, to believe I'm missing something. I'm not saying my feelings won't change, but right now and for the last five years, I just haven't needed or wanted any of the verbal expressions of affection. I don't need or expect Sean to tell me what I mean to him. I know it from his actions, yes, but it's not something I even think about except in passing.

It's as though the cravings I used to endure finally flamed out, freeing me to accept what I have and what I receive.

This post was inspired by The True Secret of Writing: Connecting Life With Language, by Natalie Goldberg.

Thursday, July 23, 2015


Something fell into place as I was doing my fourth Zentangle today, and I feel excited.

I completed Day 3 of One Zentangle A Day: A 6-Week Course in Creative Drawing for Relaxation, Inspiration, and Fun, and learned the tangles Hollibaugh (the one that looks like thatch), Poke Root (it looks like cherries to me), and Festune (upper left corner, it reminds me of candy ... or blood platelets). I used Tipple (the bubbly one) to balance the dark areas of Hollibaugh; Static (the one below Festune) because even though I don't like it it was a perfect fit for that straight space; and I tossed in Knights Bridge (checkers) as a transition between the roundness of Festune and the black/white of Hollibough.

I'm terribly excited that it worked out so well. It's a helluva boost to my confidence.

Wednesday, July 22, 2015

lost, found, lost again

I really like this question from reddit:

If someone handed you a box with all the things you've ever lost, what would be inside?

My grandmother's engagement ring immediately jumps to mind. I lost it in a house where I was renting a room in 1995. I think I left it on the toilet tank while I showered, it got knocked off and fell into the toilet. Or I forgot it on the toilet tank and the landlady took it, but I don't think that's likely. I looked for it for weeks and never found it, that's all I know.

It was the second time I'd lost it, too. The first time, in 1992 or so, it disappeared from my father's home. I found it many months later in a retail space we'd rented for a software store my family was starting. It must have hitched a ride on some furniture we moved from the house to the store. I was pretty excited to find it that day and thought I'd be more careful in the future.

Not so much, apparently.

Monday, July 20, 2015

tipple, static, crescent moon

The Day 1 Zentangle
Beckah Krahula, author of One Zentangle A Day, writes:

There are no mistakes in Zentangle, so there is no need for an eraser.

I'll be taking her at her word.

My hand is shaky, perhaps from the medications, and my eyes don't focus properly, but I love what I've made today. It's such a scary thing to set something to paper - to make it permanent - but I'm so committed to this book that I'm willing to experience that fear.

I used a 3.5"x 3.5" tile from Artist's Tile Sketchbook; the Sakura Pigma Micron 025mm (01) black pen; and a Tombow 2H pencil and the Derwent blender for shading, .

Thursday, July 16, 2015


It's got that negative connotation, I know, but 'metastasis' is really the best word for what happened when I started the grown-up coloring.

First came the Tombows. I couldn't just color with them, though - that would be a waste - so I started looking around for other ways to use them.

I found lettering.

I found Zentangle.

I found this:

I have a lot of activity ahead of me, and it's exactly the kind of activity I started craving when I was in the hospital in May: simple, meditative, creative, mindful, and meaningful.

Tuesday, July 14, 2015

lucky thirteen

I started a new drug today.

I'll have to add Actemra to this list as of today.

It's called Actemra and I have to visit the local ER every month to receive it as an infusion.

It's one of those crazy expensive drugs we hear about in the news; if I had to pay for it myself I'd be charging about $2,000 to my credit card each time, from what I see on the Internet. Instead, the province paid for the first dose and private health insurance will pay for the subsequent doses.

Actemra is intended for rheumatoid arthritis patients, but I don't have arthritis. I have relapsing polychondritis, and it has targeted my heart, causing inflammation serious enough that I experienced total heart failure in the very early morning hours of April 30, 2015. Happily, I was at the University of Alberta emergency room at the time.

None of the doctors at this prestigious teaching hospital had experienced a case of polychondritis like mine before. There are fewer than half a dozen cases in the medical literature so far.

What that means is that none of us know what will work to treat me. The Actemra is like a piece of spaghetti we'll throw at the wall: if it sticks, it's done. If not, we'll have to cook up something more.

Sunday, July 12, 2015

coloring like a grownup

It started with moisturizer.

Sean and I were in Calgary and we stopped into Kensington Art Supply so that I could pick up some Gloves in a Bottle, which I've used for years to keep my cross stitch embroidery clean as I work it. Kensington Art Supply seems to be the only store in Alberta that actually sells the stuff.
As I searched the shelves for the moisturizer, Sean did his own browsing. When he found me, his face was lit up. He knew he had something I'd be excited about.

 I've always enjoyed coloring, but this was the grown-up version. Sean brought me to the rack where they kept all the books. I added this one to my growing bundle of purchases:

And then I had to ask the salespeople which coloring media they would recommend. I was introduced to - and fell head over heels for - Tombow Dual Brush Pens.

Using a Tombow is like painting with butter. Smooth, silky, gorgeous. Perfect absorption by the paper means zero streaks. They're blendable, too, so shading is easy if that's what you want to do.
I bought eight basic colors plus a blending brush. When I got home I hit up Amazon and ordered some sets. I now have 27 pens, three blenders, a mister (essentially a super-tiny water spray bottle) and a blending palette.

blending palette
The Groovy collection
Secondary color collection
Blending pen

I've mostly finished my first coloring page. I want to complete the background but am not satisfied with any of the colors currently in my possession, which means I'll have to do some shopping.

Life's a bitch.

In the meantime, this is hanging on my fridge: