Doctor Update

Today I saw my kidney specialist about all the strange exhaustion stuff going on. He confirmed what I sort of thought anyway, that it’s all probably a side effect of the small amount of prednisone I’m taking. This gives me hope. It means I’ll only be feeling crappy for another couple of weeks. He also wants me to tell everything to the super-special disease doctor that I’m seeing in two weeks who might have more insight.

So things are looking up. I’ve talked to work and they understand everything. I’ve seen the specialist, and he knows what’s going on and doesn’t think it’s my kidneys (yay!); and I have an appointment with the fancy disease doctor in two weeks if I’m still feeling like there’s a bowling ball on my chest and I can’t walk to the corner because I’m so tired I feel like I’m going to fall down.

I still have to have the test on Monday, which is kind of yukky, but at least it’ll rule out for-sure-for-sure that I don’t have an infection in my heart.

The Worst Part…

…is that I don’t feel like myself lately. My brain can’t focus, I have no energy to do anything. I keep crying because I don’t like not feeling like myself, not feeling useful, not feeling like I’m living up to my potential, whatever that might be. There are so many things I wished for when I was a kid, I think, or at least I knew to trust my instincts, that everything would be okay. That I would be okay. The worst part of all of this is losing that inner voice. The lost cry of my own personality being drowned by the disease and my seeming inability to wake up these days.

Would anyone think less of me if I took a break?

OMT (One More Thing)

Yesterday, we were sitting backstage after the show, and I can’t remember where it came from or if JKS said it himself, but I found this incredibly inspiring:

“I’m an artist. I create the world, not the other way around.”

So that’s my approach to life and art and blogging and working and being sick and being alive and being tired and reading and thinking and everything. It’s truly my world. I’m creating it. It’s not creating me.

Frustration With A Capital "Fr"

So I stayed home from work yesterday as per the ER doc’s instructions only to find out he never sent the order for my new test. It’s now scheduled for November 28. On top of that I never heard back from the specialist, so it seems that whatever’s in my chest can’t be all that tragic considering no one’s really taking it all that seriously.

Our friends were in town playing with Sarah Harmer at the Glenn Gould Studio. It was wonderful to get to see the show, it’s beautiful inside and truly sounds amazing. The whole evening was kind of surreal. I’m feeling so out of it that it’s hard for me to stand up for long periods of time, so I was glad it was a sit-down show. But at the same time, it’s so anti-rock that I didn’t know quite what to do with myself. Do I “woo!”? Do I “whoop!”? Can I holler? Should I dance in the aisle (um, no definitely frowned upon)?

The whole evening was full of strange callbacks to my past. Danny Michel was playing with Sarah Harmer. He used to be in this band called The Rhinos. When I was at university the couple times I saw them play I was either drunk or on acid (please don’t tell my father). The first time, we were so hammered we totally sat at the front of the very small club (The Toucan) and talked to the band through the entire set. Oh, silly girls.

The second time, they played at this strange club in Kingston (I can’t remember the name now, but maybe it was A.J.’s), and I sat on this set of stairs beside the stage. I was so high that I kept reaching through the iron bars to take their things: hats, scarves, mittens, beer, anything I could get my hands on. It was totally bizarre. They kept coming back to look for things and I had moved them, and then moved away so they had no idea what was happening. Oh, being high on acid. So silly.

So it’s strange that I have such an intimate memory of him, of his band, and he has no idea who I am, other than the girl he sort of kind of yelled at when the CBC guys gave the rest of our friends crap for smoking outside—the smoke was blowing back in on them. And I wasn’t even smoking—because girls with Wegener’s really shouldn’t be smoking, as much as they might want to.

Earlier that evening, Sarah Harmer and The Weatherthans covered Islands in the Stream, by Kenny Rogers and Dolly Parton. I listened to Kenny Rogers so much growing up at the cottage, that it made me all warm and fuzzy thinking about my grandfather, playing poker and these strange “talent shows” all the kids used to put on in the middle of the summer for our parents. Which made me think of how I grew up, what a great time I had, all the people I love and loved, and all the other things you remember from your childhood.

It could just be the meds that are making me introspective, imagining links from events today that connect me inexorably to who I was ten, fifteen, even twenty years ago. It could be that my body is so tired that the only way for me to expel my energy is through willing my brain to work despite everything that’s going on. Who knows?

Oh, but the strangest part of the evening? Danny Michel pulling a totally pimping pair of crocodile leather shoes out of his car, holding them up saying, “Check these out!” Apparently, he thinks they’re kickin’ but he’s not brave enough to wear them just yet. Then everyone finished packing up their rock gear to move on to the next part of the evening. This was the part where I went to bed and they all went out and got hammered. I hate the disease.

#57 The Year of Magical Thinking

Life changes fast.
Life changes in the instant.
You sit down and dinner and life as you know it ends.

It was aptly fitting that the book I took with me to the doctor’s today was Joan Didion’s The Year of Magical Thinking. A highly personal and extremely effective memoir about the sudden death of her husband John Dunne and the illness of her daughter Quintana, Didion’s book just won the National Book Award for nonfiction.

It’s a superb read, and it actually calmed me down to the point of thinking it’s the perfect book to have with you when you’re sitting in a hospital waiting room. Didion’s writing style is sometimes hard to follow, she writes long, complex sentences without a lot of punctuation, but that’s because they echo long, complex feelings and issues like grief, death and illness.

Her magical thinking is such a brilliant way of looking at how to cope with the death of a spouse, someone she had been married to for almost 40 years, that it becomes a bit of a trope within the book itself. She can’t give away her husband’s shoes because what would he wear. She doesn’t want to move the last stack of books beside his bed because what will he read when he gets back. When she finds out Julia Child has died, she thinks she and her husband can have dinner, wherever they are.

Yet, there’s another element to the story: her daughter’s illness. It’s another example of magical thinking. Didion’s own mourning and grief over the death of her husband is totally interrupted by her daughter’s terrible illness, and the book moves back and forth over the experiences around these two devastating tragedies that define her life in this period.

It’s not a book of advice, nor is it a self-help book, rather it’s a brilliant examination of the process of grief and mourning. Throughout everything, Didion notes that her own experiences as a writer, as a reader, tell her in times of trouble, of dis-understanding, to go back to the literature, back to the written word, to find the answers. In an extreme bit of self-reflexivity, Didion’s given so many people dealing with tragedy something magical of her own—this book for us to go back to.

“This is my attempt to make sense of the period that followed, weeks and then months that cut loose any fixed idea I had ever had about death, about illness, about probability and luck, about good fortune and bad, about marriage and children and memory, about grief, about the ways in which people do and do not deal with the fact that life ends, about the shallowness of sanity, about life itself.”

Frustration With A Capital "F"

Okay, so I made an appointment with my family doctor today to see if I can find out why I’m so tired these days. I’ve been having this strange pressure in my chest that sort of feels like I’ve got the wind knocked out of me, and think that might be why I’m so tired. Annnywaaay. I see the family doctor for three fleeting seconds before she’s on the phone with Emergency (the clinic is in the hospital), and calling up my kidney specialist to tell him that I’m in her office feeling lowly.

Sooo, she sends me downstairs to the ER. And it’s exactly what you’d expect: bedlam. It’s the very last place on Earth I want to be. In fact, I can think of no place I’d actually call hell, except an emergency room at a crowded downtown Toronto hospital. I didn’t think I needed to go the ER, I just wanted to make sure I didn’t have an infection in my heart, which I’ve had before, because that’s what it kind of feels like.

I got to the ER at 11 AM. I left at 6 PM. I had blood drawn, an EKG, and myriad other tests to confirm that maybe it’s not pericarditis, but maybe it still is—because I have to go back TOMORROW for another test.

The whole point of me going to see the family doctor was the following: A) not to bother my specialist with the minor ups and downs of my health that may or may not be related to the disease; B) to determine if maybe I’m so tired because of the disease; and C) to AVOID AT ALL COSTS the ER because it’s unnecessary and, well, not a bloody emergency.

The resident was super-nice. But he has no answers. He doesn’t know if it’s the disease. He in his cutie-patootie faux-hawk and super cool brown cords can’t tell me if I’m sick because I’ve got a disease or if I’ve caught some strange viral infection. His advice? Go see my specialist ASAP. That’s actually written on my ER orders: Go see [insert name of ragdoll’s super-duper specialist here] ASAP.

There’s nothing more frustrating than feeling like you’re wasting time and precious resources. I had work to do. I have a life to lead. I have a disease to battle. None of these things can be done from a bed in the ER ward listening to the truly ill people wailing like they need a wall and dying in beds beside me.

Slowly Melting = Good Karma

Making it through an entire day of work feels almost like climbing Mount Everest. Okay, I’ve never actually climbed Mount Everest, so I’m sorry if I’m offending any true blue mountaineers out there. By the time I get home I’m flushed and semi-feverish, or at least I feel that way, totally exhausted and thinking about bed. I put on my pajamas (jogging pants, sweatshirt) and I turn on the television. So. Not. Exciting.

But tonight I had a function to go to for work. Flare magazine had a cocktail party to celebrate their year, and it was a lot of fun, despite my lack of energy. In fact, I had a My Name is Earl moment. I had forgotten to dump my business card into the buckets for the door prizes until the very last second, when Zesty pulled a fast one and dropped it in. And I won a $250 gift certificate for Yorkdale Mall! Bring on the shoes, bring them on!

Perhaps the world is being kind to me because I’m feeling so poorly lately. Who knows? But it was kind of funny.