Vánočka and Dogs

Since several people mentioned the golden retriever in the comments on my last post, I thought I'd show him off:

He's just over a year and a half and still very, very full of beans. He's a family dog and lives at home with my parents, not with me in my little apartment (he'd go crazy - he's very much a country dog). He's also a big (really big) baby, and likes to sit on laps. When I'm home with my family, he wakes me up every morning by bashing his way through my closed bedroom door and coming to sit just at the head of the bed, and laying his nose alongside my pillow.

Also, the Vánočka (pronounced vah-nooch-ka).

WordDoc asked about this. It is a lovely, mildly sweet bread made at Christmas in the Czech Republic. It's usually braided with raisins and sometimes currants baked into it. It's dense and has a slightly yeasty taste. I love it with a bit of butter and a cup of tea.

Here is an authentic recipe. Or, you can often buy vánočka in bakeries and Eastern European markets.

We have yet to try the traditional Czech Christmas carp.

Christmas by the numbers

On Christmas morning:

1 arthritis-friendly corkscrew in my stocking
1 golden retriever, happily chowing down on wrapping paper
A whole lot of bacon, scrambled eggs, tea and vanocka (delicious Czech Christmas bread)

On Christmas Day:

4 billion raindrops
1 warm woodstove
3 cozy comedies on BBC Canada

At Christmas dinner:

4 implanted defibrillators
2 women who've undergone surgery and beaten cancer
2 cases of rheumatoid arthritis

1 merry Christmas.

A poem for Christmas

Written in 1927, after Eliot's conversion to the Church of England.

The Journey of the Magi

A cold coming we had of it,
Just the worst time of the year
For a journey, and such a journey:
The ways deep and the weather sharp,
The very dead of winter.
And the camels galled, sore-footed,
refractory,
Lying down in the melting snow.
There were times we regretted
The summer palaces on slopes, the
terraces,
And the silken girls bringing sherbet.

Then the camel men cursing and
grumbling
And running away, and wanting their
liquor and women,
And the night-fires going out, and the
lack of shelters,
And the cities hostile and the towns
unfriendly
And the villages dirty and charging high
prices:
A hard time we had of it.
At the end we preferred to travel all
night,
Sleeping in snatches,
With the voices singing in our ears,
saying
That this was all folly.

Then at dawn we came down to a
temperate valley,
Wet, below the snow line, smelling of
vegetation;
With a running stream and a water-mill
beating the darkness,
And three trees on the low sky,
And an old white horse galloped
away in the meadow.
Then we came to a tavern with
vine-leaves over the lintel,
Six hands at an open door dicing for
pieces of silver,
And feet kicking the empty wine-skins.
But there was no information, and so
we continued
And arrived at evening, not a moment
too soon
Finding the place; it was (you may say)
satisfactory.

All this was a long time ago, I
remember,
And I would do it again, but set down
This set down
This: were we led all that way for
Birth or Death? There was a Birth,
certainly,
We had evidence and no doubt. I had
seen birth and death,
But had thought they were different;
this Birth was
Hard and bitter agony for us, like
Death, our death.
We returned to our places, these
Kingdoms,
But no longer at ease here, in the old
dispensation,
With an alien people clutching their
gods.
I should be glad of another death.

T.S. Eliot

Merry Christmas and happy Hannukah, everyone.

Pacing ourselves. Or not.

I. Am. Exhausted.

It's not even Christmas yet, but I just can't stop yawning. Last night, for the first time ever, a little wobbly heart popped up on my home blood pressure monitor when I tested my BP. I looked it up in the manual, and apparently that's its way of saying, "Hey, Helen - you're in arrhythmia!". Cute. Thanks.

I huffed and puffed all night, with my pulse hovering around 110, even sitting on the couch. Blah.

I am not very good at pacing myself at this time of year. I know this is something many of us with chronic illness struggle with; there's so much shopping, cooking, celebrating, eating and socializing to be done, and we don't want to miss out on any of it. I don't, anyway - I know some of you are smarter than that.

For instance: I know standing around in stores is going to kill my back, but I do it anyway. I know eating a big turkey dinner is going to make my heart rate skyrocket and make me feel like I can't breathe, but I do it anyway. I know all the sleep I'm losing is going to make me feel like garbage, but I just keep ploughing ahead.

We've all got things we do even though we shouldn't. Living with chronic illness means we're constantly weighing things in the balance. Would I rather feel sore from an awful theatre seat, or miss out on beautiful music? Would I rather be exhausted the next day or sad that I missed a great party? Would I rather have to lie down and breathe like a whale for a while, or miss an opportunity to gorge myself on stuffing and gravy? (Okay, maybe that one's just me, but come on. It's stuffing! And gravy! And wine!)

Lest you all think I'm horribly irresponsible, let me clarify that the reason I allow myself these transgressions (with the full knowledge that I will pay for them later) is that they're relatively rare, and for most of the rest of the year, I am careful. I eat tiny portions, keep my drinking to a glass or two per week, get lots of sleep and stay away from activities I know are flare-inducing.

Let's be honest: the fact that we're forced to measure negative against negative, and simply choose the lesser of the two, really sucks. But there's another way of looking at it. Despite illness, we aren't giving up. I like my turkey dinner, and I'm damned well going to eat it like a man. I like a late night out now and then, and I'm not going to give that up either. And if I feel terrible the next day, well, I'm strong enough to handle it. We all are.

So here's to overindulgence. I hope you've all got a little on your calendars this year.

No one parties like the chronically ill.

Phone call

First of all, thank you so much to all of you who left kind and encouraging messages on my acceptance to law school. I'm a bit deer-in-the-headlights right now, but in a good way.

Now to my post.

**

Is this how Dr. Grumpy feels with his bizarre patient phone calls?

I'm home with my family for Christmas. "Home" is a tiny town in southwestern Ontario, where my uncle is the only practicing GP (as was my grandpa before him). We have a fairly unique last name, so we occasionally receive calls intended for other members of the family.

Early this morning, the phone rang and I picked it up. The conversation was as follows:

Helen: Hello?

Elderly woman: MY FOOT!

Helen: ...Excuse me?

EW: It's horrible! There's so much pus and it's changing colours!

Helen: (Speechless)

EW: You told me to change the dressing today, and I started to unwrap it and it smells horrible! I picked the scab off of it and...

Helen: I think you're looking for my uncle! This is his brother's house.

EW: WHAT? My foot is full of pus!

Helen: You want my uncle! Dr. Helen'sUncle.

EW: WHAT?

Etc.

Why she thought I was my uncle, I have no idea. After much back-and-forth, I directed her to his number (sorry, uncle J! It is in the phone book, after all) and she rang off.

A small-town doctor has nowhere to run.

Woah.

I heard back from a Toronto law school this morning. I'm in!

I am both excited and TERRIFIED.

It's not my first choice school, but now I know I'm in somewhere, and I'm also hoping this bodes well for the other schools I've applied to (especially the one in my city, so I would not have to move for the eighth time in eight years).

Even though I will most likely not accept this school, the whole law thing suddenly feels much more real.

All my life, I've thrown myself into things without really sitting down and making concrete decisions. It's just who I am. I don't like planning, and I don't do it very well. The flying-by-the-seat-of-your-pants technique can make things unnecessarily scary, though. (I'm also sad at the thought of leaving the coworkers I like so much.) I do know that, as much as I like them, cool coworkers are not a reason for staying in a career I'm not passionate about - and I can still be friends with them. Something feels right about law - a small, rural family practice just feels like me. Law school still scares the pants off me, though.

Since I'm not telling many people yet, I thought I'd share it with you.

I've got serious butterflies in my stomach.

Back to regularly scheduled patient-blogging soon.

Two things

Thing one:

I'm off to the doctor again next week - just barely squeezing in the appointment before Christmas. I'm having some odd abdominal pain, and I'm suspicious that it may something to do with either my kidney stones (which have been hanging around happily for a few years now without attempting an exit), or an ovarian cyst. I've had cysts before, including the one that ruptured (a highly unpleasant experience, and one which I do not wish to repeat).

I have a feeling this could turn out to be a snowball appointment. It'll start small - just a chat in the exam room - and expand and expand with ultrasounds, follow-ups, and more ultrasounds. I've done it all before, but I'd really rather not.

Thing two:

Last night was my office Christmas party. It was great fun. There are only 12 of us, and we all genuinely like each other. We had rented a small restaurant, and everyone was pleasantly tipsy.

Early in the evening, the bartender approached me discreetly while he was delivering drink orders.

"I noticed your MedicAlert bracelet," he said. "I'm also a paramedic. Is there anything I should know?" I suppose he might have been wondering whether I had any serious allergies.

I was a bit taken aback, but I explained my ICD. I don't always wear my bracelet, but I do put it on when I think I might be drinking - especially with people who don't know or understand everything that's going on with my heart.

The whole exchange was a little surprising. I felt somewhat self-conscious every time I ordered a drink from him after that, wondering if he disapproved. At the same time, though, it was reassuring to know that there was someone in the room who understood what was going on, and would be able to act if anything happpened.

I'm not used to people asking me such direct questions about illness, and when they do, it can feel like a relief.

Electricity

I wrote the following some time ago, but wasn't sure when I would post it. Then this happened. On live Danish television, a speaker's implanted defibrillator fires three times, delivering approximately 830 volts to his heart and knocking him to the floor. Dr. Wes offers a thorough explanation of what's happening - if you have a moment, go and watch it.

****

My first night at home after my defibrillator was implanted, I had a nightmare.

I was in a waiting room at the hospital when my heartbeat became rapid and chaotic. I braced myself, knowing the defibrillator was going to fire, terrified of what it would feel like.

I awoke mid-scream.

****

I’ve never been shocked by my ICD; at least not while conscious. After it was implanted, I was converted into ventricular fibrillation under a general anaesthetic so the device could be tested. But though it has paced me a bit since then, I’ve never had to be defibrillated.

Two years ago, my Dad’s defibrillator shocked him six times after he'd been exercising. The first shock scared him. The second, stronger shock knocked him off his seat and onto the ground. The next four jolted him off the grass as two kind strangers spoke calming words and dialed 911.

As it turned out, those shocks were inappropriate. As smart as these devices are (and they truly are amazing), they can occasionally mistake a working heartbeat for a dangerously fast rhythm. My Dad, after being airlifted to the nearest cardiac unit, had his settings adjusted slightly and came back home. He’s had no shocks since, but it’s taken some time for him to feel confident exercising.

Sometimes I’m scared too. Sometimes I hold back when I’m working out. Sometimes when I feel my heart flutter, I’m seized by fear my ICD is about to fire.

If I let myself think about it too much, I feel a mild panic rising. When I run my fingertips over the hard metal square and the bumpy, still-tender area where the leads emerge from the top of the device, sometimes I want so badly to just pull it out. But, buried as it is under layers of flesh and muscle, it might as well be worlds away.

Wren wrote yesterday about those feelings of guilt that can come when we think we're feeling too sorry for ourselves. I've gone back and deleted pieces of this post that I thought made it sound like I'm whining, like I'm taking this incredible, life-saving piece of technology for granted. But I'm going to be honest: sometimes, it really sucks.

I am grateful for it, but it frightens me. My ICD is teaching me that there are things I can’t control – a tough lesson for someone who likes to be in charge. And, I sometimes think, rather an extreme teaching method.

Ratatouille with Roasted White Fish

I made this for my family this weekend, and it’s one of my favourites. I felt in need of something wholesome and healthy to counteract all of the Christmas cookies (and Christmas wine and Christmas cheese and Christmas Starbucks lattes) I've been ingesting.

The original idea comes from Jamie Oliver, who, much as I love him, sometimes likes to include all sorts of fiddly extra steps, like holding the red pepper over an open flame. Not possible on my electric stove, unfortunately. I'm sure he won’t mind that I’ve simplified this and added my own touches. Add more, and other, veggies as you like. Jamie also includes shellfish like shrimp and scallops. I’m allergic to them so I leave them out, but I imagine they’d be very good as well.

It’s wonderfully healthy, and lovely and warm and peppery for a winter’s night.

Ratatouille with Roasted White Fish

Olive oil
1 large red onion, chopped
2 cloves garlic, minced
1 red pepper, chopped
1 eggplant, fluffy inside removed and the rest chopped
1 or 2 zucchini, chopped
1 can whole plum tomatoes, no salt added
1 tbsp red wine vinegar
5 or 6 fillets of fish (this is really good with anything – sole, tilapia, haddock, even non-white fish like trout)
Basil
Thyme
Bay leaves
A bit of salt
A whole lot of freshly ground pepper
Lemon juice

1. Preheat the oven to 375 F. Heat olive oil over high heat in a roasting pan or Dutch oven. Toss in the red pepper and stir quickly over high heat for 3 or 4 minutes, browning up the skin. (I do this instead of holding the pepper over a flame, to give it a bit of a smoky flavour.)

2. Lower heat to medium, add in onion and garlic and cook, stirring, for 5 or 6 minutes or until onions are soft and beginning to brown.

3. Add in the rest of the vegetables with some basil and thyme, and the freshly ground pepper (I put in a ton), and cook for a few more minutes until they soften and start to colour.

4. Pour in the tomatoes, with liquid, breaking them up a bit with a spoon. Add the red wine vinegar. Stick some bay leaves in with the vegetables, then cover and place in the oven for 40 minutes.

5. Remove the roasting pan from the oven. Sprinkle some salt, pepper and lemon juice on the fish fillets and lay them on top of the vegetables. Put the pan back in the oven, uncovered, for long enough to cook whatever fish you’re using – I do 10-12 minutes for white fish like sole and longer for something like trout. Remove the bay leaves when finished.

I like to serve this in a big bowl with brown rice.

Brrr

It is cold.

-19 degrees celsius today, with a wind that seeks out the tiniest gap in your clothing and finds its way in. I walked to work like the Tin Man, my uncovered face first stinging and then numb. Stiff, stiff, stiff. It's the kind of cold that seeps into your bones and doesn't let go, even long after you've come inside.

As my coworkers arrived this morning, I heard the same ritual repeated over and over: A moan, a slow, stiff-fingered shedding of layers, and noses blowing. We've decided to find ourselves some comfort food at lunch, although that means venturing out again.

I'm going to be back home with my family this weekend, and I'm looking forward to warm evenings around the wood stove and the warmth of our great big golden retriever, who curls up on the couch and lets me stick my feet underneath his belly. I'm going to make this Jamie Oliver turkey and leek pie. Then, on Sunday night our choir performs. I'm excited, and just the tiniest bit nervous, because my singing teacher is coming to hear us (and he's in one of the best choirs I've ever heard - yikes).

With our incredible soloist (most definitely not me), we are singing this:



It's a thrilling piece, and I'm so excited about it. After Wednesday's practice, during which we all kept our coats and scarves on, I just hope they remember to turn the heat on in the church.

Stay warm, all of you.

Ten

That’s the number of times each year I should have to visit the hospital and/or see a doctor once things have settled down in the cardiac department (which, fingers crossed, will be very soon).

One visit with Dr. Cufflinks, encompassing echo, ekg and appointment all in one go.
Two visits with my rheumatologist, whom I absolutely love.
Four bloodtests.
Two defibrillator checks.
One annual check-up with my PCP.

That number could easily go up, and to some people ten might seem like rather a lot of appointments. But compared to the past three years, it’s going to be a relief. In 2007 in particular I had more than 40 appointments and hospital visits - kind of a rough year. Ten will be a piece of cake.

So much becomes relative when you live with chronic illness. Ten hospital visits feels like nothing. One flaring joint feels great compared to the body-encompassing pain and inflammation you experienced a week or a month ago.

Most of the time, I think of myself as healthy.

Healthy, despite chronic illness.

I do everything I can to live well with my conditions. I make an effort to eat well, exercise, do things that I love, build good relationships with my doctors and comply with medical advice. Sometimes I could do better. And sometimes, no matter what I do, there are challenges I can't overcome. But I think one of the great things (really) about living my whole life with RA is that a certain level of pain, fatigue and limitation feels entirely normal. If you're newly diagnosed, I imagine that sounds kind of depressing. It doesn't have to be; it can be liberating if you let it.

Ten visits to the hospital feels normal. It feels better than normal.

Cheer up, Helen

Yesterday I complained about my hip. Thanks to Wren, WarmSocks and Britta for the sympathy.

I suppose I’m flaring, and can’t do a whole lot about it. Stairs are hard, sleeping is hard, using my elliptical is hard (but I still did it last night – yay, me!). I’ll just keep an eye on it and keep track of my pain and inflammation. Right now I take 15 mg of methotrexate per week. My rheumy lets me play around with my dosage myself, within reason (weird, I know, but I’ve been on it for 15 years and she trusts me to know when I need a bit more or can do with a bit less). Still, I’d rather not have to increase it.

So today’s remedy is not methotrexate, but a list of things I can be happy about. In no particular order, here they are:

1. I finally got an underground parking spot at my apartment building – just in time to avoid scraping ice off my windows and ruining my hands.

2. Every Tuesday at noon the Cathedral (beside my office) puts on a free 45-minute organ recital. That’s today. It’s so peaceful and relaxing just to sit there alone and listen.

3. I made a delicious boeuf bourguignon last night and brought some to work for lunch.

4. My choir concert is this Sunday!

5. My tropical basil tree is huge and just keeps growing. My thumb is getting greener.

6. I get a week and a half off over Christmas. Can’t wait.

7. My aunt, uncle and cousins are coming to see us this year - and I won't have to spend 6 hours in the car.

There. Simple, but effective.

What are you looking forward to?

Thanks a lot, hip.

My hip is driving me crazy. Seriously bananas. I'm fantasizing about removing it myself.

With my magical mix of Enbrel and methotrexate, I do pretty well. Most of my pain and limitation are the result of permanent joint damage incurred years ago, rather than disease which is presently active. This gives me a sort of fragile feeling. I don't like anything bumping into these joints or even touching them suddenly, and as a result I protect myself reflexively. When I use them - especially with any kind of repetitive movement - I end up in quite a bit of pain. But there is relatively little that is actually happening in these joints.

My right hip, however, is another story.

It's not a sharp pain. It's a dull, buzzing, numb-ish, taunting pain. It has me almost wishing for something stronger. I want to bang into something just to feel anything other than this low, constant ache. The skin around it is warm to the touch. It spreads like something hot spilled down my thigh and across the back of my pelvis. Every night I elevate it elaborately on pillows and think, think, think about other things until I fall asleep.

It's like a tooth-ache that won't go away.

It's funny. My hips were never affected by RA until about a year ago. As a child and as a teenager, I think, without really being conscious of it, I slotted the arthritic hip firmly into "not me" territory. "I'm way too young for that," I told myself, even though I knew I wasn't. I had the fused wrists, the locked elbow, knees like balloons. But not a bad hip. Definitely not that.

Stupid hip.

****

And what do you do with a hip? Wrists are nice and small, easily bound in splints or submerged in water. Even knees can be wrapped with relatively little effort.

Hips are so awkward. There's not much I can do unless I'm sprawled on the couch or in the bath. And though I enjoy a hot bath and time off my feet at night, sprawling of any sort is likely to be frowned upon in my office.

What do you do with an arthritic hip?

A loss

A beautiful young girl collapsed and died suddenly in England this week of undiagnosed HCM.

It is common for families to be unaware of inherited conditions such as HCM and Long QT Syndrome until a child or parent experiences a cardiac arrest. Along with their grief over the loss of a loved one, these families also must often begin a long and difficult process of diagnosis and treatment themselves.

The following organizations in Canada, the U.S. and Britain work to facilitate research into these conditions, to educate the public about their existence and the importance of CPR and external defibrillators, and to support patients and families.

The Canadian SADS (Sudden Arrhythmia Death Syndromes) Foundation.

Cardiac Risk in the Young (CRY), in the UK.

The Sudden Cardiac Arrest Association (SCAA), in the US.

A reminder to be grateful

Dr. D links to a new blog this morning, called Medical Moments in 55 Words. Brief, meaningful posts and lovely writing.

And just what I needed in the midst of one of my occasional bursts of irritation with the hard lump of my defibrillator, that itchy diagonal scar:

“Done with defibrillators!” he declared in spring.

No shock when his heart quivered in November and dropped him to the floor.

A younger Ed clowned and smiled through his memorial slide show. In the final slide, yesterday’s Ed held his tiny grandson like a treasure in his lap, a comma not a period to his life’s story.

I'm lucky. That lump is a blessing.

Five things not to say to me, thank you

1. That you know someone who "died of arthritis." No, you don't. You know someone who died of complications related to RA.

2. That "we're both going to end up in wheelchairs" now that you've been diagnosed with OA in your foot. I know it sucks, but seriously. Shut up.

3. Don't tell me how you looked up HCM, how so many people have died of it and how devastated their families are. I'm aware of that, have experienced it, and have taken all possible steps to prevent it happening to me.

4. Don't cry and expect me to comfort you while you're telling me how sad it is when people with HCM die suddenly.

5. "I have arthrtis, too. I take Tylenol."

Where's my Christmas spirit? It's still here, don't worry. It's just taking a brief intermission while I vent about some of the things I've heard recently.