Pens and Needles

The #1 most annoying thing about arthritic hips is...

2012-01-23T11:44:00.000-05:00

Not being able to jump up and run to the bathroom.

A lot of my classes run for 2 or 3 hours with breaks every hour. I never used to think twice about hopping up and just popping down the hall to the washroom. Now I sit there wondering:

If I get out of my seat now, how long will it take until I can straighten my hips and stand upright without holding onto something for support?

Is everybody going to see me waddling around like a demented penguin?

Will I be able to walk quickly enough to get back before class starts up again?

Then I either decide that yes, dammit, I WILL go to the bathroom, and then I get up and pretend to fuss around with something in my backpack until I'm reasonably sure I can stand straight and move without my right leg giving out. Or, I just decide it's not going to happen this time, and I spend the rest of class really regretting the enormous mug of tea I polished off in the first half hour.

Liebster Blog Award

2012-01-18T13:04:00.002-05:00

I was very pleasantly surprised to receive the Liebster Blog Award from the lovely and inspiring Mariah at From This Point. Forward (she's having a baby! And she got through law school while facing RA, which gives me hope when I feel like curling up in bed and never coming out). I always enjoy these - it's such a fun way to get to know other bloggers and to connect with more people.

So, on to the award. Here's what you do:

Thank the person who gave you the award.
Link back to the Blogger (or Bloggers) who awarded you.
Answer the following questions, down below.
Pass the award out and recognize other Bloggers letting them know that you love them.

Here are the questions:

Favorite color: Green, in any shade but lime.

Favorite animal: Dogs - I adore them. I always embarrass myself by asking strangers if I can pet their dogs (or, in one case, hug them... I think the owner thought I was nuts, but he did let me do it).

Favorite number: 4.

Favorite drink: I love wine and I also have a guilty attachment to anything carbonated (though I've switched successfully from pop to carbonated water), but if I had to pick one I would have to say tea. I don't know what I'd do without it.

Facebook or Twitter? Facebook. If I signed up to Twitter, I can see myself tweeting once and then forgetting all about it. It seems too involved for me.

Passion? Music! I love many things, but playing, singing or listening to music is one of the only activities that I can become completely immersed in. I'm currently in a choir and also trying to re-learn the piano.

Getting or giving presents? There's nothing better than finding a really wonderful and surprising gift, and watching someone you love open it.

Favorite day: Sunday (unless I've got a paper due on Monday, of course!). I love quiet days taken up with cooking, reading, hiking and good tv.

Favorite flower: Forget-me-nots. They're so tiny and perfect, and such a lovely blue. I also find orchids really fascinating!

So now for the tagging! I'll just do what Mariah did and tag three wonderful bloggers:

Cathy at The Life and Adventures of Cateepoo. I am always inspired by Cathy's determined and optimistic approach to RA, and by her commitment to living in a way that respects her body, the environment and the people around her. She's also got a really cute dog.

Wren at RheumaBlog is a truly wonderful writer. Her stories - for that is what they feel like, not just posts - cut to the core of what it's like to live with RA, but she also reminds us that there is still much beauty, and many good things, in the world if we look.

Britta at Chronically Young blogs about her busy life with chronic lyme disease, school, work, and so many other things in between.

So there you are. A few things you might not have known about me, and a few of my favourite blogs. Enjoy!

I've got 1.5 hours of Latin to memorize

2012-01-11T13:46:00.000-05:00

Sometimes it's hard not to think about illness all the time. Lately I feel like I've been spending an awful lot of energy trying to keep up with symptoms and appointments (hospital again tomorrow - sigh), and nobody likes to feel like that's all they do. So in that spirit, I thought I'd write a few posts on some of the other important things in my life; things that have nothing to do with RA or my heart.

I decided to get involved with a more serious choir this year, and I went to my first rehearsal on Monday night. The choir has 110 voices and its own orchestra, and a really brilliant but no-nonsense director. It was all very new to me - I've only sung in small choirs before, and never with a full orchestra accompanying. It was great fun, but also a little scary. I had to stay completely focused or I'd have mucked something up, and the director always knows when you muck something up. (He doesn't single anyone out by name, but he does shout things like, "I hear one guy singing an A flat!" and everybody knows who the one guy is.)

We're performing two requiem masses on Good Friday - by Fauré and by Saint-Seans - in the main concert hall in my city. Here's a small, really lovely bit of the Fauré Requiem:

Isn't it gorgeous?

I've said this before, but one of the reasons I love singing so much is that it's a physical activity I can actually do. RA makes zero difference to my ability to sing, and this choir in particular seems to attest to that. I saw a number of singers with disabilities, all thoroughly enjoying themselves and able to participate at exactly the same level as everyone else. I also love that it requires all of my concentration, which means that even if my hips hurt, I can't stop to think about them. In a way it's like meditation, demanding that I remain fully in the moment. That's hard to do most of the time, but so much less difficult when you feel there are others depending on you not to slip up.

Oh, how exciting. I think rehearsals are going to be the highlight of my week!

My new gadget

2012-01-04T23:14:00.001-05:00

I had a present in the mail the other day.

It's called a CareLink Monitor, and it's from Medtronic, the people who made my defibrillator. Every night while I'm sleeping, it reads my device and transmits the information to the hospital. If anything is unusual, it alerts the nurses in the ICD Clinic and they can get in touch with me.

You plug it into your phone line, then place the little round wand thing over your heart for a few seconds so that it can read all of the personal information on your device. Then it sends that information to the hospital, and ta-da!, you now have a personalized monitor that keeps track of everything your heart device does.

Pretty cool technology, although I have to admit I am not one hundred per cent happy about it. In fact, I've said "no thanks" to it repeatedly. It's another thing with more plugs and wires (it has lots of wires) to fit into my little apartment, and it's also a constant reminder of my defibrillator. When I'm feeling fine heart-wise (which is the vast majority of the time), it's still sitting there looking at me with its little green lights.

That said, my nurse managed to convince me by telling me it would have caught the problem with my leads this summer before the device shocked me. I'd still have needed surgery, but I could have bypassed the making-a-scene-in-public bit, and that would have been very nice. So now I have a new device to keep an eye on the other new device and make sure it doesn't develop any problems. (Soon I'll be getting a CareLink Monitor Monitor. And a CareLink Monitor Monitor Monitor.)

All complaining aside, it is reassuring (and pretty amazing) to know that any potential problems with my ICD should be caught before they manifest themselves in unnecessary shocks.

New in 2012!

2012-01-02T10:49:00.001-05:00

I have made a few resolutions for 2012. Nothing big, just some small changes I'd like to try making over the year. I want to say "yes" to new things more often, find a bit more time to do things I love, and stop skipping ahead to the ends of books (I have already broken this one - it is so hard! I have an uncontrollable urge to know what happens).

Another of my resolutions is to be more aggressive in my approach to RA. In the past few weeks it seems to have moved into my feet, where it's never been before. My hips seem worse, too, and I'm starting to wonder if that replacement might happen sooner than I thought (some days I really hope so!). I already knew Enbrel was no longer working as well as it used to, but this seems to confirm that my disease is changing and getting worse despite my meds.

My rheumatologist has always been reluctant to switch me to a new biologic. She's found that as patients switch from their first, they see diminishing returns with each new one they try. I've been injecting Enbrel for ten years, though, and its returns are already significantly diminished. I'm definitely not ungrateful. Enbrel has been an enormous help to me for a very long time, but I think it might be time to try something new.

I'm feeling uncertain, though. School has been stressful this year, and I also need to be thinking about getting a job in law - if not this summer, then absolutely an articling position for the year after next. It's not an ideal time to start fiddling with treatment plans and potentially making things worse. Then again, things are already worse. I'm not sure what to do.

I suppose resolutions have to start somewhere, though, and I am getting started on this one by promising to devote more time to thinking constructively (meaning not just moping) about what I can do to improve my health. Meds, exercise, surgery, diet, meditation: I will think about all of it. It's time for a change.

Loving my scar

2011-12-12T16:11:00.000-05:00

My very best friend is marrying a wonderful man in September, and I am maid of honour.

So far, it's been a ton of fun. I'm close with the other bridesmaids and with the bride's family, and it's been a great excuse to spend time with people I love who live in different cities. There have been sleepovers and dinners, dress-shopping days and many, many phone calls.

Yesterday, we chose the bridesmaids' dresses, and they are (drumroll)...

(This is the dress, but it's going to be black.)

STRAPLESS.

Strapless was my number one no-no when we set out to find a dress, and everybody was very understanding. I am still not totally cool with the new placement of my defibrillator, or with my new, significantly longer, scar. Before we tried it on, the bride and her Mom told me over and over that we would not get the dress if I felt in any way uncomfortable; that I didn't even have to put it on if I didn't want to.

But I did, and I surprised myself. I thought the scar looked beautiful. It skimmed elegantly along the line of the dress, a gentle pink against pale winter skin. It made me different, and it told a story. I liked it. I even thought it looked kind of sexy.

I thought more about the scar later, and everything it represents. Fear, certainly. Pain, uncertainty, a little crying and a few obscenities in a Swiss Chalet. But it also represents the choice I made to have a more difficult, but safer in the long term, surgery than I needed to. It represents the amazing care taken by my doctors and nurses, and by my surgeon to make sure his incision was as tidy as it could be. It represents the love I felt from my friends, family and even coworkers when I went through that difficult month.

I think it deserves showing off.

Enbrel Mishap

2011-12-03T14:01:00.000-05:00

So I'm pretty used to injecting Enbrel. I've been doing it for 9 years now (I just counted - yikes! 9 years!) and I don't really think about it anymore.

Tonight I must have gotten the angle wrong or something, because I suddenly noticed that as I pushed down the plunger, the drug was bubbling back up through my pores! I've never seen it do that before. Hundreds of dollars, sliding down my leg. Oops.

I'm guessing I jabbed it in at less than the recommended 45 degree angle, and it ended up too close to the surface of my skin. I will pay more attention next time - no more injections while I'm watching TV/talking on the phone/in the middle of the night when I'm half asleep.

The hip report

2011-11-28T16:42:00.000-05:00

I saw my rheumatologist for my regular check-up today.

Things are looking good, for the most part, except for the hips. It seems strange to me that the rest of my joints can be doing so well while my hips keep getting worse. She did say that she thinks my swimming is helping. But she also said that at some point we'll need to think about hip replacement.

I was upset for a few minutes, but then I went back to being upset about the fact that I've got a major paper due on Friday and I've only written four pages. I'm too busy to mope, and I think that is a very good thing. By the time I hand the paper in, I'll have a Christmas party to prepare for, then exams, then my choir concert, then another exam... lots and lots of things to do.

I read some things by a psychologist named Jordan Peterson a while ago that I found interesting. He thinks the goal of a virtuous life should be to find the things that make you unselfconscious, and do them. Unselfconscious in the sense of being so absorbed by what you're doing that you forget to think about yourself, about the time, about the fact you haven't eaten yet, or (for many of us), the fact that your joints hurt. I like that, and I know what he means.

I don't think he means we shouldn't think about our lives, or that we should never feel sad or worried. I think he means that we're at our best when we're engaged with the world rather than just with ourselves.

In my own experience, I've always felt the least pain when I've been doing something that matters to me. Whether it's singing or writing or cooking for someone, or talking to a friend. It's not that my pain isn't there; it's just that my mind stops picking up on it for a while. I think the same can often be said for emotional pain or anxiety.

Not that I'm totally there or anything. But once in a while I'm reminded that it's good to be busy. I don't want a hip replacement. But I also don't have a lot of time to think about it, and I'm pretty happy about that.

So, I'm interested: what keeps you busy? what matters more than illness to you?

Arthritis in the news

2011-10-27T22:08:00.000-04:00

The CBC ran this article on the prevalence and cost of arthritis today.

I think it's quite good, actually. There are one or two idiot comments down below, but for the most part, I was impressed.

No doctor's appointments for two months: fail

2011-10-17T16:38:00.000-04:00

Remember when I thought I could go two months without seeing any doctors?

Shouldn't be too difficult, I thought: arthritis is on a reasonably even keel lately; new defibrillator and leads are in and shouldn't be falling apart anytime soon; new meds are started.

I didn't consider the many little things, all the lovely partners-in-crime of autoimmune diseases, that can surface unexpected. Like shingles, which I began to notice on the palm of my hand on Saturday and which are now covering my hand and arm, swollen, bright red, and painful. I've had shingles before, during a time of intense stress, and I've been feeling increasingly overwhelmed these past few weeks. So here come the shingles.

And thus I found myself at the doctor's office this morning, and then at the pharmacy, shelling out for a week-long course of antivirals.

At first I was angry, and quite averse to a trip to the doctor. There goes my goal, I thought. All I wanted was two months without a medical appointment! Two months of feeling like someone whose body works just fine without expert advice. So I stomped around a bit with furrowed brow, etc.

But then I thought, Ok. Maybe I don't get to be the person who doesn't go to a doctor. Maybe I'll be the person who goes to the doctor and takes care of things right away, and doesn't let them get out of control. That's a pretty good thing to be, right?

And really, if you're going to nip something in the bud, shingles is a good thing to nip. It's gross - both in its symptoms and in its genesis (the chicken pox virus hibernates in the spinal column and then wakes up years later, like an alien), and itchy and sore and unpleasant - for some, it's excruciating, although luckily not for me - and it's a good thing to get rid of if you can.

So I'm taking my horrendously expensive antivirals and attempting to de-stress a little (although I have just agreed to co-chair my city's Walk to Fight Arthritis and have also accepted a research assistant position with a legal history society). And I'm ok with going to the doctor when I need to. I guess.

??/2/28

2011-10-12T13:24:00.000-04:00

There's a lot I don't know about the onset of my juvenile rheumatoid arthritis.

I know my knees turned red and swollen. I know I became easily fatigued, reluctant to get up in the morning. I know my grandpa - a GP - cried when he saw me and suspected JRA.

But that's about it. I was two at the time, so my memory of early symptoms and diagnosis is, for the most part, nonexistent. What I do know I have heard from my parents, relatives, and once, an old family friend who told me about the day years ago when she went in to see my grandpa in his office and he confided his suspicions.

So I don't know what I weighed (what does a two-year-old weigh?), or what I ate (though I'm assuming nobody was shoving potato chips down my throat) or how I spent my days (I liked My Little Ponies).

One of the goals of this year's World Arthritis Day is to break down the myth that people with autoimmune arthritis somehow brought the disease on themselves. I think I'm a pretty good example of how patently untrue this is. At the time of my diagnosis, I was barely myself yet. I wasn't overweight or sedentary or afflicted with an insatiable McDonald's addiction. I didn't have an unhealthy lifestyle. I hardly even had a lifestyle.

I have now had JRA for 26 years, and I know that autoimmune arthritis really can just happen. The belief that patients themselves are to blame is hurtful and unhelpful. Anyone, at any time, can develop arthritis, and misconceptions like these don't get us any closer to improved treatments. Blaming patients is a convenient way of shifting responsibility for the disease, of saying, "this won't happen to me." But it can, and it is happening to millions of people around the world.

What are your numbers? Post your weight at onset, age of onset and current age in the comments or on Facebook or Twitter (@IAAMovement). Help tell the truth about autoimmune arthritis.

Healthy Packed Lunches

2011-09-27T11:22:00.008-04:00

It's been a long time since I posted a recipe. Now that I'm back at school, I pack a lunch three days a week and am always searching for interesting, healthy, filling options. Here are a few of my favourites (the first two recipes make 1 serving):

Quinoa and Veggie Salad 2 ways

About 1/3 cup quinoa
Small handful diced sweet potato
Some diced red pepper OR quartered Brussels sprouts
Tbsp each of olive oil and red wine vinegar OR 1 tbsp olive oil, some grainy mustard and a small splash of balsamic vinegar

Option #1: Stick the quinoa in a pot, cover with water (about 1/2 cup if you are using 1/3 cup quinoa) and toss in the sweet potato and peppers. Bring to a boil, then turn the heat down and let simmer for about 15 minutes until most of the water has been soaked up and the quinoa is plump, but not dry. Mix in the olive oil and red wine vinegar. Sprinkle with pepper.

Option #2: This is my favourite, but takes a little longer so I don't make it as often. Again, stick the quinoa in a pot, cover with water and add the sweet potato cubes. Bring to a boil, turn the heat down and simmer for about 15 minutes. Meanwhile, toss the halved Brussels sprouts with a bit of grainy mustard and oil, then roast at 375 until caramelized, about 20 minutes (but keep an eye on them!). When the quinoa is ready, mix in the roasted sprouts. Whisk the oil, some more mustard and a little balsamic vinegar together, then add to the quinoa.

These are both good at room temperature - no need to heat them up.

This is my cave in the law library basement, some quinoa salad, and my horrible, horrible administrative law textbook.

Goat Cheese Veggie Sandwiches

2 slices whole grain flax or spelt bread
Spreadable goat cheese (especially good with a garlic-harb or peppercorn cheese)
Cucumber
Alfalfa sprouts

Spread both slices of bread with a layer of the cheese. Cover one slice with alfalfa sprouts and the other with cucumber slices, and stick together.

Italian Bean & Tuna Salad

1 can white (cannellini) beans
Handful of green beans
1 single-serving can tuna packed in olive oil, flaked with a fork
2 tsp capers, chopped
A couple of torn basil leaves
A bit of red onion, minced
Splash of red or white wine vinegar
A bit of salt and pepper

Drain and rinse the white beans, and blanch the green beans until tender crisp. Toss it all together. This one usually makes two or three servings, but it lasts a few days in the fridge.

So, there you go. What are your favourite packed lunches? Please share!

Stumbling through another disclosure

2011-09-19T13:34:00.000-04:00

Leslie at Getting Closer to Myself just wrote an interesting post on disclosing her illness. I had, coincidentally, been planning to talk about the same thing this week, and Leslie's post has given me some perspective on my own recent disclosures.

Having two very different health issues to explain can be challenging. After I've gotten one out of the way, I often feel like launching into the other is just too much. Either I've explained my RA and the prospect of doing the same with a genetic heart condition is exhausting, or the other way around. And sometimes I worry that getting both out of the way at once makes it sound like my life is a neverending succession of doctors and treatments. Of course it does feel that way at times, but that's not the whole story.

My first date with the person I'm seeing was less than two weeks after my surgery (I still have no idea why I did that), and the heart thing came up fairly naturally. My incision was bright red and visible above the neckline of my shirt (frustratingly, it still is), and I was keeping my left arm pinned to my side, so it wasn't something I could hide very easily. I explained the surgery and the reasons for it, and that was that. It went well.

But I left out the RA. I'd dumped so much information on this guy who'd never even had blood taken, and who was clearly trying hard to understand and ask the right questions, that I couldn't think how to begin telling him about everything else. "While we're on the subject of medical problems, guess what else I have?" just didn't seem right.

I finally told him last week, after almost two months of dating - partly because I wanted to, and partly because my Mom said I had to do it sometime. To tell the truth, I'd been enjoying not having to tell him. My joints have finally been feeling really good, and there's been no limping or flinching or obvious swelling to encourage him to ask questions. So I told him in my usual stumbling, blurting way, in an icky scene in No Country for Old Men (TERRIFYING) during which he betrayed a fear of needles. "I give myself three a week!" I said, extremely unsexily. Nevertheless, it did the trick, launching a discussion of my RA and at the same time mercifully distracting me from the movie.

So when Leslie says there is no book on disclosure, she's right. In the past I've wished I could come up with some failsafe formula for explaining everything, but that just doesn't exist. Every relationship is different, and I'll just keep feeling my way forward with each new person who comes into my life. Maybe I should have told him sooner, but maybe his reaction to my surgery and recovery told me everything I needed to know at the time.

Now, seriously: if you haven't seen No Country for Old Men, bring something to hide under for, like, the entire thing.

Update!

2011-09-13T11:26:00.000-04:00

So I'm a second year law student.

It's so much better than being a first year law student! My schedule is flexible, I no longer spend every day with the same 15 people (even if they're great, that's a lot of enforced togetherness), and I get to choose my own courses. This term I'm taking Aboriginal Law, Intellectual Property, Real Estate and Administrative Law. Next term I've got Media Law, Advanced Intellectual Property, Trusts and Civil Procedure. I'm beginning to narrow my focus to the various forms of property law - real estate, creative works, media, aboriginal land claims - and it feels good to be making my own choices. Last year I felt babysat. This year, I feel much more independent.

Uncertainty used to scare me, but somewhere along the line it has started to feel the opposite. It's somehow comforting to think that I can't plan everything or see into the future. I turned 28 this week, and I could never have predicted much of what has happened over the past year. Some of it has not been so great - I had absolutely no idea I'd get a shock from my defibrillator or need it replaced, and no idea that my hips would get so bad. But I also couldn't have imagined getting through the shock and the surgery, or feeling excited and content again after my breakup last summer. I'm even dating someone - someone I knew years before - and I definitely didn't foresee that.

When I worry about my future with RA, I remind myself how much things can change in a year. I can't predict how I'll feel or what treatments will be available to me, but I think I can be confident that, whatever happens, I'll have what it takes to adapt and respond. That's all I can do, but I think it's enough.

So things are good. Hips not great, but swimming a lot. School stressful but interesting. Weather starting to turn.

Happy fall everyone.

Two months without doctors

2011-09-08T11:51:00.000-04:00

Think I can do it?

I'm so tired of doctors. I don't want to see a doctor, talk on the phone to a doctor, pass a doctor in the street or even drive by the hospital.

My doctors, pretty much without exception, are awesome, but the last few months have felt like a never-ending succession of appointments, procedures and follow-ups to procedures. I really want to feel normal for a while.

Tomorrow I'm stopping by my GP's office to pick up some medication samples, but after that I'm really hoping I can get all the way to my November rheumatology appointment without needing any sort of medical attention. And I don't even want to speak to my electrophysiologist until next year. Lovely as he is, I want us to forget about each other for a while.

Wouldn't that be wonderful?

More evidence that I am actually an old man

2011-09-02T17:53:00.000-04:00

According to some recent bloodwork and my new super-cool and thorough GP, I am on my way to having gout.

Gout?

Gout.

When I think about gout, this is what I picture:

(Not a photo of me.)

This is the latest in a list of issues and ailments that make me suspect I may actually be an old man. Hypertension, kidney stones, shingles, arthritis, and now gout. I should probably order my dentures now.

And the thing is, I eat really well. The culprit foods my doctor listed - smoked meats, ripe cheeses, beer, wine - are foods I hardly touch. So okay, I do touch wine, but not in excess, and I only very rarely eat the other items on the list. Plus, I eat loads of vegetables and fruits, whole grains, brown rice, fish, etc etc. All the stuff they tell you to.

Some people apparently just produce a lot of uric acid (mine was significantly elevated), though my doctor is going to look into my medications and history some more. Meanwhile, since I like to be in charge and don't particularly like to have obscure Dickensian illnesses, I am going to research the hell out of uric acid-reducing diets and then stick to one, even if diet isn't the problem. Just so I can feel like I'm working at it.

For now, though, I am going to stop thinking about it and instead plop my elderly Victorian gentleman's body on the couch and read for pleasure before school starts on Tuesday.

Getting in the way

2011-08-23T15:39:00.000-04:00

Illness doesn’t like to be ignored.

It waits until you’re going about your business, feeling reasonably well and enjoying your busy life, and then it pops up to wave hello, just to make sure you remember who’s really boss. It doesn’t want you getting too comfortable.

Take last week, for instance. I had a (minor, and I’m fine) pulmonary embolism. A clot that had formed in my heart after surgery migrated into my lungs, very briefly blocking the flow of oxygen. I got lightheaded and short of breath, my vision narrowed and my lips turned blue. (Staring into the mirror at your own face turning blue is an interesting experience.) On my own in my apartment at the time, I held on to the wall and made my way down the hall to the bedroom.

Now, I love living on my own – being a neat freak when I want to be and a slob when I’m tired; showering with the bathroom door open; eating odd things at odd hours. But sometimes, when something like this happens, I feel like this is another thing chronic illness wants to wrestle me for.

I’m completely fine now. I lay down for five minutes and felt much better, then went to my doctor. But I was scared, and as I lay in bed sweating buckets and trying to take deep breaths, I was also annoyed. “Come on,” I thought. “I don’t want a roommate!”

I think we all know that feeling of having some part of our ordinary selves threatened by illness. It’s not just my living arrangements. Sometimes it’s my job or my social life, or my workout or even my evening plans. Maybe some of you have set aside favourite hobbies or daily walks.

It feels, sometimes, like something’s chipping away at the things that make me me. It’s disappointing and it’s scary, and what’s to be done?

I’ll make adjustments, but I won’t change who I am. And I am a person who likes her space.

I think that’s one of the greatest challenges of living with chronic illness – much easier, I think, for those of us who have lived with it our whole lives than it must be for people who are suddenly confronted with a life-changing diagnosis. Sometimes it’s a struggle to find ways to be ourselves with bodies that seem entirely uncooperative. But it’s necessary and important to do so; to understand the things that are meaningful to us and to shape our lives to accommodate them. These things might not look the same – I’ve got a doctor on speed-dial now and a neighbour who’s said she’ll be there if I need her – but they’re ours.

That’s what matters.

Healing

2011-08-17T15:39:00.000-04:00

Spot the difference:

3 days post surgery.

3 weeks post surgery.

Not bad. Thanks, Dr. Y.

Swimming

2011-08-08T14:23:00.000-04:00

Guess what.

I miss the pool!

I'm not supposed to use my left arm for a month, so I put my Y membership on hold until September. Now I find myself craving my aquafit classes and the laps I'd been swimming. I think this means I've finally found an exercise routine that's right for me. I've never really missed working out before - I've missed being active in general, but I've never craved a specific activity.

Not only is the pool a big stress-reliever, it also does wonderful things for my dumb old hips. I had a cortisone shot in the right one in mid-July, and it's helped a lot, but I've found cortisone is extra awesome combined with water exercise.

I'm a little uncertain about those laps, because I think they may have contributed to my lead fracture. But, Dr. Sneakers is convinced the lead was already damaged, and assures me I should be able to do almost any kind of exercise I want. (We have no idea how long the leads had been damaged, but it could have started as much as a year and a half ago.)

I went in my parents' pool on the weekend and floated around on a noodle, and it was lovely. I'm so looking forward to returning to my regular swims.

(PS: my incision is iiiiiiiiiiiiiitchy!!! Scratch scratch scratch scratch.)

Hi there. Please look at my chest?

2011-08-03T13:30:00.000-04:00

I am feeling much, much better.

The full-body pain of last week - a nice little leftover from the muscle relaxant they used before intubation - is gone. I also got my bandage off yesterday morning, and the incision appears to be healing nicely. And, I'm feeling less anxious now that I'm up and doing things for myself again. Still tired and a bit blue, but I am working hard at taking care of myself, getting enough sleep and relaxing.

The only thing that's really bothering me is the placement of the new ICD. When I received my first defibrillator, I asked for it to be implanted under the pectoral muscle. This meant more pain and a longer recovery, but the device was nicely tucked away and not very visible. When the surgeon put in the replacement last week, though, he decided to hide it under breast tissue instead. He explained afterward that submuscular implants are becoming rare now that ICDs are so much smaller, and that he wanted to ensure easier, less painful surgeries down the road.

I get that. I know he was doing what he thought was best. And I know that the placement of the device wasn't the thing on everybody's mind. Lead extraction can be complicated and risky, and I'm so grateful that my surgeon got everything out neatly and without nicking anything important. Dr. Sneakers informed me beforehand that the team would have to "get out all their open heart surgery tools" just in case, and I'm very happy we didn't need them.

But this thing is basically in my breast. It's lumpier, and I think more noticeable, than before. Not so helpful for someone who is already a bit self-conscious about her (enormous) chest. Now it's enormous AND lumpy. And of course, I wasn't planning on surgery this summer, on having to make a decision about a new ICD. I wasn't planning on having to think about these things.

I hope I'll feel better about it once it doesn't hurt anymore. I hope it settles in soon and doesn't feel so foreign. And I hope somebody looks at it and tells me it's no big deal.

I suppose if I ever had a reason to go around flashing close friends, this would be it.

Blah.

2011-07-31T10:28:00.000-04:00

Thank you, everyone, for your messages after that last post. I'm so happy to be catching up on my favourite blogs again.

I don't feel like myself right now. My whole body - appetite, cycle, everything - is out of wack after the general anaesthetic. My throat hurts and my voice is weak from the breathing tube they inserted during the surgery, which lasted three and a half hours. My hands and wrists are sore, I suppose from IVs and my arterial line. And then there's that wonderful combination of nausea and hunger. All I want to eat are popsicles.

On top of that, I've been so anxious since the surgery. I suppose I just feel overwhelmed by all the decisions of the last month, and all the physical weirdness this week. I've been waking up with my heart racing and a knot in my stomach.

Everything feels gross.

I think I'll feel better once I've been back to the hospital on Tuesday and they're removed the sticky, itchy dressing I've been wearing on my chest since Monday. I think it will feel good to go back to work, too.

I'm going to try some gentle yoga and meditation. I want to feel like myself again.

WHAM!, etc.

2011-07-27T16:58:00.000-04:00

So I haven't blogged in a while. It's a long story.

It started at the beginning of July, on Canada Day weekend. I was in a restaurant with my parents, and I'd just walked down a small flight of stairs to the washroom when I felt something explode inside me. I don't know how else to describe it. It happened too fast to be painful. I felt an enormous bang in my chest, my vision went blank, I felt electricity rush along my limbs and I shouted something obscene at some poor woman who happened to be walking by at the time.

I was so confused I didn't immediately think of my defibrillator. I pointed at the ceiling and babbled about having been electrocuted. I was terrified. When it finally dawned on me that my ICD must have fired, I burst into tears, expecting to feel another shock slam into my chest at any moment. My Mom lowered my to the floor and went to get my Dad, who found me sobbing and hyperventilating outside the door to the ladies' room. Always dignified.

I didn't receive another shock. I calmed down and went back to my parents' house, and then to the hospital the next morning, where I learned that one of my leads - the wires that connect the device to my heart - had fractured.

Not supposed to happen. Definitely not supposed to happen after only three years.

I needed what's called a laser lead extraction. I had it two days ago, and it went well. I lost a lot of blood, so I'm tired and a little woozy, but I get to eat all kinds of yummy things to make up for it and I'm feeling much better than I did yesterday. And, I no longer beep every three hours.

I've got lots more to say, but I'm tired and sore. For now, I am back, and I'm planning to spend some time catching up on your blogs and doing more blogging of my own. As I said, it's a long story, and I've got lots to tell you.

On moping

2011-06-06T11:08:00.000-04:00

This month’s Patients for a Moment, hosted by Leslie at Getting Closer to Myself, asks: what gets you down, and what do you do to pick yourself back up?

This took a bit of thinking. At first, my mind wandered to all the things I can’t do. Skiing, circus performing, general running about. But that’s not what really gets me down. Maybe I’d be more bitter if I’d grown up doing those things and then had to give them up, but I didn’t. It’s hard to feel cheated out of something you’ve never been able to do.

No: what bothers me more than almost anything else is when it hurts to do nothing. When I find myself saying things like:

“Ow, it hurts to sit on the couch and read.”

Or,

“Ow, lying in the bath hurts.”

Or, worst of all,

“Ow, lying in bed hurts.”

That’s when I really feel helpless. The fact that I’ll never be a trapeze artist seems reasonable enough in the circumstances. I’ve got a chronic illness. My joints are all shitted up. Of course there are lots of things I can’t do.

But I feel like I should – I REALLY SHOULD – be able to lie around doing nothing without pain. And when, after a day at work or school, I’m plopped on the couch and everything still hurts – well. That’s when the shaking-of-fists-at-the-universe happens. Because I feel like I’ve given a lot to this disease. I was a more careful child, a more careful teenager, than any other kid I knew. I turned down invitations, felt my face seared with humiliation whenever I attempted and failed some simple physical task. I spent mornings in physio, swallowed pill after pill, awkwardly explained my puffy knees to classmates. The least RA can do in return is let me put my feet up occasionally.

And there’s another reason this whole thing gets me down: it scares me. I mean, come on: it hurts to lie down? Really? I know I can handle it now, but what if one day I can’t? What if it gets worse? It’s hard to ignore pain and discomfort when there’s nothing to distract you, and so it’s these times, when I’m attempting to do nothing, that my arthritic future looms most frighteningly in the near distance.

So I mope. But wait - all this, and I’ve only answered the first part of the question. Now that I’ve gone all maudlin, what do I do to pick myself up?

The answer, underwhelmingly, is nothing. But it’s also an okay answer, because I get picked up anyway, just by carrying on. Inevitably after a night of uncomfortable tossing comes a normal day of running around, working, having conversations. Distractions, in other words. The future will be full of them, and I’ll get on with it then just as I do today.

Not much of an answer, I know, but I think it's all we can really do. I could - and sometimes do - treat myself to a new top or a manicure, watch something that makes me laugh, or moan to a friend, and all of those things would help. But there would, sooner rather than later, be another moment in which I would lower myself into a warm bath and think, "well this doesn't make any difference. It still feels like someone's grinding broken glass into my ankle."

The only way to pick up my mood in the long term is to pick up my body in the short term; to do the things that need doing. Sometimes it'll hurt, and sometimes I'll have to do less than I wanted. That's the way it is. And meanwhile, there will be the occasionally couch/bed/bath mope-athon.

I guess that’s just another thing RA wants from me.

Clickety-click

2011-05-31T11:27:00.000-04:00

That, friends, is the sound my right hip makes now, every time I bend it.

Thankfully, I've been in to see my rheumatologist and I'll be getting a cortisone shot in it within the next week or so. She was great - I emailed yesterday afternoon, and she saw me at 8:30 this morning.

She did a range of motion exam, which hurt like hell but was not impossible. Despite the clicking, my range is still reasonably good and she thinks there is only a small amount of damage to the joint. We'll know more after the x-rays I get when I have the injection. She warned me that "damage breeds more damage", so I'll need to stay on top of things.

To that end, I signed up for a membership to the Y near my apartment. They've changed their pool scheduling, so now I can take a therapy aquafit class a couple of nights a week. I went last Thursday and again last night. Yes, it was me with a group of 80+ year old women (and I was the only one who appeared to be struggling), but it was a good class and I left feeling like I'd had a decent amount of exercise, even though I did have to cheat on some of the hip stuff. And floating around with no weight on my joints felt wonderful. The best part is that they make you sign up for six months at a time, so now I've got to keep at it.

I mooned about on the weekend, feeling horrid. Cried, slept, grouched, ate pie. I'm ready to feel better.

I am so looking forward to this injection. I hope it works like the left one did.

I did it (anyway)!

2011-05-25T12:02:00.000-04:00

I’ve just gotten back from a wonderful father-daughter trip to England. We went for a week, stayed in a lovely coastal town in the southeast, and rented a car to beetle around to nearby villages and historic sites. We hiked in the South Downs, explored Canterbury, and poked around lots of National Trust gardens.

Did I hurt? Yes. More than on other trips? Yep. Where there things I couldn't do? Yep. When I went backpacking with my best friend a few years aso, I was shocked by how great I felt. I actually lasted longer than she did on some of our days out hiking. My rheumatologist had given me a bottle of prednisone to take along just in case, but I never needed a single one.

This time was different, and I’d be lying if I said I wasn’t a bit disappointed to see the way things have changed. It’s still almost all in my hips, which I suppose is a good thing: except for my right hand, my joints are all pretty much the same as they have been for the last four or five years. And I’m also glad that at this point, once I get walking, my hips usually do loosen up. Still, I did quite a lot of hobbling and, unfortunately, quite a bit of waddling as well. My right hip has turned outward and sometimes it’s hard to straighten it out again, which, I am sorry to say, makes me walk like a duck.

The point of this post, though, is that I went on the trip anyway, and I had a great time anyway. All the fun I had and all the pleasure I took in seeing so many beautiful things have eased some of my fears about the future. I learned that pain can’t destroy the things I truly love. It might change them. It might force me to adapt. But that’s okay, because I’ll find a way around it and I won’t let it stop me.

Daydreaming

2011-05-11T15:02:00.000-04:00

I've been doing a bit of fantasizing lately. Not about vacations or big houses or handsome fellows. No: I've been daydreaming about hips.

Fake ones, to be precise. Nice metal ones that don't seize up or feel brittle or stiff. Hips that do exactly what I tell them without protest. Hips that can traipse, gallivant, gallop and skip.

Wishful thinking, I know. A hip replacement would be a big deal. It would necessitate a lot of time off from school or work. It would hurt. And even if my hips felt perfect, I'd still have RA, which would definitely cut down on the gallivanting - maybe even the traipsing.

Besides, my doctor's always got another trick up her sleeve, and maybe I'll never need surgery.

Nevertheless, it's nice to imagine.

Vacation!

2011-05-05T15:50:00.000-04:00

I'm finally on the other side of exams, and, though it's hard to believe, on the other side of my first year of law school. I had only one minor disaster in which my computer chose to crash an hour and a half into my contracts exam, and I had to switch, somewhat frantically, to writing by hand. The result was a very messy six or seven pages filled with scribbles, asterisks and arrows, so I'm very glad it only happened once.

I've got a few weeks off before I start back to work for the summer. My hips are feeling fragile - isn't it funny how RA brings different kinds of pain? This isn't the sharp, gnawing, can't-move pain I had in my left hip before my cortisone injection. This is duller, and though I'm stiff I can still move around fairly well. My hips (both of them now) feel like they're made of glass. I can use them, but I always feel instinctively as though I have to protect them from shattering. It's pain that can mostly be ignored as long as I stay busy, which is what I plan to do.

Although I learned this year - somewhat to my surprise - that law can be a very creative discipline, I've been missing my old outlets. So, with the next lovely, wide open couple of weeks I'm planning to get back into freelance writing, start a professional blog, and get started on the stack of books I've got waiting for me.

I also want to stay active. I may have helped my grades, but I didn't do my body any favours spending the last month plonked at a desk, grazing all day and staying up until two in the morning. Now I've got time to eat actual meals, go for walks and bike rides, and, of course, keep Henry occupied with his ball.

Happy spring!

Illness in the news

2011-04-20T10:01:00.000-04:00

Dr. Sneakers is something of a media star (at least, in what I imagine is the very small world of cardiac electrophysiology). He's well known and respected, and so he gives frequent interviews and soundbites on related topics when they come up in the news. This morning I awoke to a full article in one of our national papers entitled "Maintenance of Implanted Defibrillators Linked to Complications", featuring good old Dr. S as the man behind the research. I wasn't looking for it. I wasn't even thinking about it, but there he was.

His study revealed that 1 in 25 patients experienced complications - some of which he calls "clinically devastating" - after having their defibrillator batteries changed. Lovely. Some of the other points in the article (for instance, that complications occurred most frequently in hospitals that performed the fewest surgeries) keep the thing from sounding too alarming.

Still, there's nothing like seeing your doctor in the paper, revealing to the world some newly discovered risk that applies to you. Of course it's good that these issues are being covered, and it's beyond great to have a doctor who's so widely respected and who's clearly at the forefront of ICD research. But it's not always fun to read about.

My usual approach to the ICD is that I've made my decision, and I'm past the point of trawling the internet for risk statistics and scary stories. I mean, I can't just decide I don't like it and dig the thing out. Maybe when it's time to change my own battery, I'll go back into research mode, but not now. Not when the little guy is snug in there with a healthy battery and, happily, no apparent desire to cause trouble.

What about you? Do you keep your eye on the latest research into the treatment you've chosen, or do you decide that, once you've made the difficult decision and accepted the risks, you're not going to worry? Then there's all the research into the disease itself, whether you have RA, cardiac issues, or something else. Have you always got your ear to the ground, or do you push ahead with your life and figure your doctor will tell you when something big happens?

Sometimes I'd rather just bumble along, pleasantly ignorant, and leave all that stuff to my doctors.

Romance

2011-04-13T15:46:00.000-04:00

I had a boy over last night, somewhat unexpectedly. After he'd gone I went into the bathroom (which he'd used), and...

there were used (capped! I'm not a total slob) syringes lying on the countertop and a home blood pressure monitor on the floor.

Dammit.

He never actually said anything about them, of course. He didn't do anything to make me think he had noticed them - but they were right there. Of course he noticed them.

There's nothing like a "hi, welcome to my home hospital" to pique a man's interest.

Exam mode

2011-04-10T22:52:00.000-04:00

I'm entering two and a half weeks of final exams beginning this Friday, so posts will be sparse for the next little while. When I can, though, I'm still keeping up with all of you - nobody can study a hundred per cent of the time, and certainly not me.

Sleep and pain reduction are high on my list of priorities during exams. This is one time of year when I allow myself all the sleep meds, extra painkillers and couch-flopping I need without feeling guilty for not trying to feel better on my own. Thankfully, as the effect of the hip injection begins to wear off, the Celebrex is proving very easy on my stomach and I'm still feeling much better than I was before the cortisone. Holding it together (physically, at least!) over the next few weeks should be a fairly simple task.

I'm a big believer in not stressing yourself out to the point where you go into an exam (or whatever) a total wreck. So, I shall be coddling myself accordingly.

I can't believe I'm almost done first year!

Lazy apple brandy cake

2011-03-24T18:07:00.000-04:00

I'm tired.

I've been up until two most nights lately, and out of bed again by 7:30. I try to nap, but mostly just lie there, and although indolence is pleasant, it’s just not the same as getting enough sleep.

To perk myself up, when I get some time off from school work I’ve been doing lots of yoga and cooking. Tonight I’m making Martha Stewart’s zucchini and ricotta pasta for a friend, and I’ve been experimenting with quinoa, my new go-to brown bag lunch. My favourite recent discovery, though, is this apple cake. I got the recipe from Canadian Living magazine and made a few changes based on what I had at home, so here is my version. I’ve made it twice in the last two weeks and am making it for my girlfriends this weekend - it's that easy and yummy.

Apple brandy cake

2 large or 3 medium apples (any kind), peeled and chopped
¾ cup all purpose flour
¾ tsp baking powder
Pinch salt
2 eggs
3 tbsp brandy
1 tsp vanilla
½ cup granulated sugar
½ cup butter, melted and cooled slightly

1. Combine flour, baking powder and salt in a bowl.
2. Whisk eggs, then beat in sugar and add vanilla and brandy. Slowly add in the melted butter.
3. Combine with dry ingredients. Beat until a thick batter forms.
4. Fold in apples.
5. Bake in a greased 8” cake pan with parchment paper on the bottom for 45-50 minutes at 350 degrees.

Here's mine:

This is especially yummy served warm and a little crispy on top – if there’s some left, you can reheat it in a low oven for a while before you eat. It's also good with a bit of vanilla ice cream or whipped cream.

Spring cleaning

2011-03-10T21:34:00.000-05:00

It's finally March. It's still bloody miserable out, but I think it's time to start preparing for brighter, warmer days.

This winter has felt interminably long, and it's been hard not to give in to the temptation to hibernate, emotionally as well as physically. Even though it's cold and rainy, and there are still mountains of snow left to melt, I'm ready to start shedding some of my winter layers. There are the layers of coats and scarves, of course, but there are other, intangible layers as well: the I-don't-want-to-go-anywhere-because-it's-dark-and-cold layer, the I-don't-have-time-to-do-anything-but-work layer, the who-cares-what-I-eat-I'm-wearing-ten-sweaters layer. And maybe there's even an I'm-feeling-blue-and-flaring-and-I-just-want-to-sit-here layer.

It's been two weeks since my cortisone shot. It hasn't had the dramatic effect I experienced when I had cortisone injections as a child - there's still pain and stiffness - but my hip doesn't feel useless anymore. I don't dread standing up after class or maneuvering out of bed in the morning. With a renewed sense of confidence, I went back to yoga last week after missing a few classes. I also got back on my elliptical. And I'm back to sticking, more or less, to a healthy, home-made, primarily vegetarian diet.

I'm also 'cleaning house' by switching off Naproxen after five years. It was causing stomach ulcers, which was surprisingly difficult to figure out, both for me and my doc, as the pain was radiating to my back. I've been off it for a month now, and my stomach is so much better. Since my blood pressure is well-controlled with my beta blocker, we're going to try replacing it with Celebrex. I'm happy not to be taking an NSAID.

My lettuce and spinach seedlings!

I'm also doing a little social spring cleaning. Although I've been enjoying law school, I have to admit I don't really feel like I belong with the majority of my classmates - the girls in their tiny, tight skirts with their thousand-dollar bags and the guys comparing their Rolexes before class (really). With my glasses, scuffed sneakers and reusable coffee mug, I often don't rate a second look. Lately I've gotten to know a small group I often run into at special human rights and environmental law lectures, and we've started meeting up at a pub (NOT a club) each week. I'm so happy to have ferretted out some people I really, really like.

It's time for me to shed some layers. To stop paying lip-service to a full, active life and start actually living it. It's true that RA is sometimes to blame when I plonk myself on the couch at five o'clock and am still there at ten. And sometimes schoolwork is to blame. And sometimes it's the fact that it's pouring or hailing or minus sixteen. I don't think what I have been doing is wrong. I do think it's time for a new direction.

Cortisone!

2011-02-23T16:45:00.001-05:00

I had my hip injection this morning, and it was so much easier than I had expected.

It was done by a radiologist under fluoroscopy, so I hadn't met the doc before. According to my nurse, Dave, I had the best one because he never hesitated with the needle. It was true: all the prep beforehand, the consent form, the antiseptic wipedown, the injection of the local, took ages longer than the actual steroid injection. When it was time for that, the doctor just slid the needle in, pushed the steroid/anaesthetic mixture, and pulled it out again. (And he was friendly, too.) The actual injection took about 10 seconds.

I watched everything on the screen above my head, which was kind of cool, although I didn't learn much. I thought maybe I'd be able to tell how good or bad my hip looked, but since I don't really know what a "healthy" hip looks like, it wasn't much use.

For now, my hip feels a bit bruise-y, but it's pleasantly free of the sharp pain I've had lately. It's been getting steadily worse, so I hope this stuff does what it's supposed to do. It will be just in time for spring, and I can't wait to celebrate with bike-riding, hiking, and an upcoming weekend wandering in Toronto with friends.

EDIT: Just because you feel great while your joint is still frozen doesn't mean you should throw common sense to the wind and go for a giant hike. Especially when you were told explicitly to take it easy for a day or two. You will regret this when the anaesthetic wears off.

Visibility

2011-02-17T12:24:00.000-05:00

My cortisone injection is booked for next Wednesday. I asked to put it off until all of my assignments and exams were finished, just in case I felt worse for a while afterward. Can you believe that, until last Friday, I was still making up December midterms that had been held over because of snowstorms? By the time my appointment rolls around, if I do feel rotten afterward, I at least won't have to worry about missing due-dates or tests.

The downside, of course, is that my hip isn't getting any better while I wait. And as it's become stiffer and more painful, it has also gotten a lot more difficult to hide the fact that something's wrong. I walk with a definite limp, stand with my feet at odd angles, and have trouble rising from my chair at the end of a long class.

I don't really have anything interesting to say about this, except that it's new territory for me. Painful, even slightly deformed wrists, fingers and elbows can be hidden quite easily, but as my limp becomes more pronounced, I'm starting to lose the freedom to disclose RA on my terms.

My policy, I've decided, is just to be honest if anyone asks. "I have rheumatoid arthritis, and my hip is not in great shape right now." I'm 27, in law school, surrounded by people who are, for the most part, friendly and intelligent. I shouldn't have to loiter after class, pretending to take a really long time gathering my things while, in reality, I'm waiting for my leg to straighten out so I can walk on it. So I'm just not going to.

Meditation and Pain

2011-02-10T12:14:00.002-05:00

Recently I've been learning about meditation. Among other things, I've been reading a couple of books by Jon Kabat-Zinn. The first is called Full Catastrophe Living, and it's directed in part at people living with chronic pain and illness. The second is a more straightforward discussion of meditation, called Wherever You Go, There You Are.

Meditation is not what I'd always thought it was. It's not about forcing yourself to be calm, or your mind to be empty. It's just about really being present; not always dwelling on the past or worrying about the future.

Sadly, not me.

Because of this, I have always been pretty skeptical about the usefulness of meditation for people with chronic pain. Wouldn't being present in my body just make me more aware of how much it hurts? What I'm finding, though, is that while meditation may not do much for the pain itself, it does seem to be changing my response to pain.

I am a worrier. I worry about people I love, about school, polar bears and rainforests. And sometimes I think the worst part of chronic illness is not the symptoms themselves, but the anticipation of more, or worse, symptoms, and the disability and disappointment that may come with them.

Last week I took a trip with my parents. It was lovely and a lot of fun, but it also involved hours of driving. Car seats and scoliosis are not a good mix, and after a few hours, my back felt horrible. I usually just take a deep breath try to ignore it, but this time I cried. Actually, sobbed - quietly, because I didn't want to talk about it with anyone. I had a total meltdown. I thought I would ruin the trip for myself and my family. And we were going to a concert that night; how would I enjoy it when each breath took so much energy? I was so angry at myself.

I probably cried for a good half hour (it didn't help that I was exhausted) before some switch in my mind flipped and reminded me that here was the perfect opportunity to give this meditation business a try. So I started to think about why I was crying. It wasn't just because I hurt.Yes, I was in a lot of pain, but I was crying because I was worried about the next few hours and the next few days.

I brought my focus back to the present, noticing the car, the trees going by outside, and even my stiffness and seizing muscles. I reminded myself that I was already in enough pain to want to crawl out of my skin. I was already handling it. Surprisingly, this actually worked. My back didn't feel any better, but after a while, I did. I stopped crying, took pills, got out of the car and walked around.

I'm definitely no master of meditation. I'm still full of worries and neuroses most of the time, and I don't often remember to bring myself back to the here and now. I'm trying to, though, and when I do, I am surprised by the difference it makes - if not to the pain itself, at least to my confidence in my ability to handle it.

Before the concert that night, I soaked my back in a hot bath, did yoga in our hotel room, and loaded up on painkillers. And it worked! The concert was lovely.

Sun and snow

2011-02-04T16:34:00.000-05:00

It's been a long winter. We've been under piles of snow since the first storm back in the beginning of December. I love cold weather, but even I am more than ready to see leaves and flowers and green grass - or any ground at all, really - again.

Henry disagrees:

He loves it when his ball is hidden under snow and he has to dig for it. And, as you can see, the sun came out and the sky was blue. It's still cold, but spring is coming.

Neat-o

2011-01-31T14:46:00.000-05:00

I'm finally finished my January term and moot court - the thing I was least looking forward to in all of law school. And, it went well! Now I get to sleep.

I'll be back to more regular blogging soon, but here is something really cool. When he diagnosed my Brugada Syndrome, Dr. Sneakers told me to sign up for brugadadrugs.org, a website managed by the Department of Cardiology at the University of Amsterdam Academic Medical Centre and a network of electrophysiologists across the world. The website keeps an up-to-date list of drugs best avoided by Brugada patients. It names each drug, what it's commonly used for, and why it could be harmful, and it even distinguishes between drugs which must never be taken, and drugs which should be avoided when possible.

The coolest thing is that the website emails you every time a new drug is added - I got an email last week telling me I should avoid tramodol. It allows me to keep an updated list with me at all times, so that whenever I need to grab something at the drug store, even a supplement, I can check to make sure it's safe. It's a great example of how researchers, physicians and patients can stay connected in a way that really helps people.

Eating for independence

2011-01-20T22:44:00.000-05:00

In the first week of law school, I was told January would be my marathon month. I don't have regular courses; just a major research paper and then a moot next week. "Marathon" is right. I know I just have to push for another week, but stress, lack of sleep and my hip are making it all seem overwhelming.

Recently I've had a few of those days we all get when we're flaring when even eating seems beyond me. I'm sore and nauseated, and the idea of getting up, walking to the kitchen and facing a fridge full of potential ingredients for... something... can seem like too much. I felt significantly better on Monday afternoon, and so I decided to actually learn a lesson from the past few weeks and buy lots of healthy, filling, easy to prepare foods so that I don't just end up nibbling on pretzels.

Here are some of the things I've been eating:

This salmon, with roasted zucchini. It was easy (I skipped the marinating under breadcrumbs part) and very good.

These stuffed peppers. Not so great, I have to say, but maybe it's just me.

This sweet potato and quinoa salad.

And this yummy tuna and white bean salad:

1 can tuna packed in olive oil, drained
1 can (or 1 cup dry) cannellini beans, rinsed and dried
Minced red or white onion
2 tsp capers, chopped fine
Salt and pepper
Blanched green beans, chopped
Splash each of olive oil and red wine vinegar

All you do is mix it all up. This makes about two meal-sized servings.

I also bought lots of yogourt, berries, nuts and raw veggies so that I can eat good things even when I can't face putting a meal together.

Eating well makes me feel better about my ability to live independently. When I feel like I don't have the energy or the capacity to make something good for myself, I sometimes start to panic a bit. This week I'm learning that I can adapt to changes in my illness and still take care of myself.

(Full disclosure: I handed in my paper today after sleeping from 3:30am - 6:30am, so I wasn't exactly functioning at a high level. I gorged on all-you-can-eat sushi and a can of coke for lunch, and then had gin and pub food for dinner with my classmates. Still, I think I did pretty well this week!)

Good work, hip

2011-01-17T09:49:00.000-05:00

It put in a pretty good performance at my rheumatologist's office last week. I even had to hop on one leg from my chair to the table.

I had been so worried that my symptoms would change or improve before my doctor got the chance to see them firsthand, but luckily that didn't happen. She could tell right away that things had gotten worse. While I lay down, she gently checked my range of motion. It hurt, a lot, but the good news is that my passive range - when she held my leg and moved it for me - is almost normal, which means there's no joint damage yet. It's just that my hip is sometimes too weak and sore to make those movements myself.

Remember when I made fun of these hip rolls for being boring? Turns out they're not so boring when you can't do them.

I'm getting the x-ray I wanted, along with a cortisone shot under fluoroscopy. With the way my hip is feeling lately, the thought of a needle being inserted into the joint makes me cringe, but at least I'll have a local.

For now, I'm staying on the same combination of Enbrel and MTX that I'm already taking. I know, though, that a cortisone shot won't do anything to change my level of disease activity, or to stop any damage that might be starting to occur despite the other meds. I need to stay on top of things, make sure I find out my x-ray results and keep monitoring my pain and range of motion. My doc is seeing me in six months instead of the usual ten, so that's a good start.

I'm feeling relieved now that she has actually seen me mid-flare. As Wren put it so perfectly in her post on guilt last week, the speed with which symptoms change can be frustrating and embarrassing. Like her, I worry sometimes that people - even my rheumatologist - might think I'm making things up, or just being whiny. I'm glad I was able to show her that's not the case.

Guilt

2011-01-11T11:54:00.001-05:00

That's this month's Patients For a Moment topic, and it's a big one.

I think there are times when guilt weighs heavily on most people living with chronic illness. There's the guilt - or maybe shame is the more accurate term - that comes from social attitudes toward sick people - the spoken or unspoken idea, true or not, that healthy people don't want to be reminded of the body's frailties. Then there's the guilt that comes when we see how our illnesses affect those we love. We think we make them worry, hold them back, prevent them from doing what they really want to do.

I want to write about the first kind. Where do we get this idea that the world doesn't wish to be confronted with our discomfort?

Last night I watched an old Agatha Christie production in which a beautiful and healthy young woman excused herself awkwardly from the bedside of a sick friend, mumbling something about finding a vase for the flowers she'd brought and rushing out of the room.

Then there are children's books like What Katy Did, the TV adaptation of which I watched a few weeks ago. Katy's anger at her disability drives her loved ones away until she learns from pretty, invalid cousin Helen that she must always be pleasant and good to everyone. Cut to scene after scene of Katy smiling like a saint from her bed, and then magically getting better.

Sick people in the media - women especially - are usually either beautifully fragile but filled with hope and kindness (barf), or bitter, angry and alone. Though I'm sure they're out there, I can't think of any media portrayals that come close to the reality of life with chronic illness. I suppose the mix of good, bad and in-between days, the monotony of pills and appointments, the getting-on-with-it, isn't very entertaining. But I also think this speaks to how uncomfortable many people are when confronted by illness.

The message seems to be, "buck up, and stop making everybody else feel awkward."

It's a rule I've tried to heed for much of my life, and it's one of the reasons I find disclosure so difficult. I always feel I'm making others uncomfortable - that I'm forcing them into situations in which they don't know what to say or how to respond, or even that I'm making them look at something ugly.

But, to quote Liz Lemon, "Oprah says we teach people how to treat us."

So am I teaching people to feel uncomfortable about my illness? Can others sense my discomfort - my guilt - when I explain why I'm limping, or why I'm not joining that soccer team? Over the past few years I've started to realize that maybe they can, and that maybe I'm part of the solution to the one-dimensional image of the "sick person" some of my friends and colleagues may have in their heads.

I guess the only way to move forward is to try not to flinch.

This past week, I was faced with another opportunity to tell someone new about RA. I'm partnering with a classmate for our upcoming moot court (horrors!) and told him I couldn't meet up on Friday evening because I had a volunteer meeting.

"Oh, cool!" he said. "Where do you volunteer?"

I told him I work with the Arthritis Society. Here it comes, I thought.

"Oh, that's great. Do your grandparents have arthritis?"

I took a breath. And then I told him that actually, I was the one with arthritis, that I'd been diagnosed when I was two and that I enjoy working with kids who have JRA.

And you know what? He didn't clam up and turn back to his computer, nor he did look at me pityingly.

"Wow," he said. "I didn't know kids could get arthritis." And then he asked me what it's like, and whether I have to take medication, and what kind of work I do with the Arthritis Society. In other words, he asked me the kinds of questions I always wish people would ask me.

So maybe it's true that many people don't know what a chronically ill person looks like, and that many also don't like being confronted with the reality that the body sometimes turns against itself. I've still got friends, after all, who don't like hospitals because they're "full of sick people." But I think Liz Lemon and Oprah were right. We can start to change that, one guilt-free conversation at a time.

How can I make the most of my appointment?

2011-01-06T15:35:00.000-05:00

Sometimes I feel like a broken record.

"My hand hurts. Now it's better."

"My hip hurts. Oh, now it's a little better."

"My hand hurts again."

I suppose that's the nature of this disease.

My left hip has gotten a lot worse lately. Often I can hardly lift my leg by the end of the day, and I've been finding that getting up from a chair requires at least a few minutes of psyching myself up beforehand. At yoga on Monday I had trouble bearing any weight on my left leg.

I was just going to wait until my rheumatology appointment in February, but my doctor actually asked me to come in earlier to sign some paperwork for my drug coverage. So, I'll be seeing her next Wednesday and I want to make the appointment count.

I genuinely like and respect my rheumatologist, and I think, overall, we have an effective relationship. That said, sometimes I feel that she ignores my other symptoms when she thinks my bloodwork looks alright. (I had blood drawn yesterday and I'm really, really hoping it shows something. I'm crossing my puffy fingers.) She also likes to have me on enormous doses of methotrexate. And, she thinks I've had too many x-rays and is reluctant to order one for my hip, even though it's never been done. My hip has changed so very much over the past year, and I really feel an x-ray is in order this time.

So, what do you like to do to get ready for an important appointment?

I'm planning to write out exactly what happens when my hip flares, including what I can and cannot do, what specific movements and activities hurt the most, and when it happens. I also need to tell her that the prednisone push did nothing. And I need to think about what changes I am, and am not, willing to make to my treatment plan. Would I consider another biologic yet? Would I increase my dosage of MTX? (NO.)

Any other ingenious tips?

Happy New Year!

2011-01-02T14:37:00.000-05:00

I am always amazed by how much it is possible to pack into one year.

Sometimes when I'm feeling overwhelmed, I head outside to look up at the sky and remind myself how tiny I am in comparison. Seeing the stars spread out against a great expanse of black, my own failures, sorrows and pains seem irrelevant. Sounds depressing, but it's not. If I'm such a tiny - even imperceptible - cog in the wheel, I'm free to blunder about, trying my hardest and making the occasional mistake, and the world will continue to turn.

I approach the New Year in the same sort of spirit. Resolutions are fun, but it also fills me with a sense of peace when I remember that I really can't plan the year ahead. Last January first, I couldn't have imagined much of what took place in 2010, and many of the things I did expect still turned out to be much different that I had thought they'd be. That's a good thing; it's what makes life exciting, and it means that when things do get rough, change is always around the corner.

All that said, this year I'm making a (tentative - that means I don't actually have to do it) resolution to ask my cute neighbour over for a drink.

May your year be full of the unexpected.

Downtime

2010-12-23T11:45:00.000-05:00

I made it through exams, and am officially 1/6 done law school (yay!).

The exams themselves were challenging but doable, and the most difficult aspect was definitely the physical. Since finishing on Friday, though, I've been getting more sleep, resting my hands and spending as much time as possible outside, and things are looking much better. The swelling in my right hand has even gone down a bit.

Henry has been accompanying me on my walks:

(I think Henry looks hilarious here!)

He also distinguished himself at my parents' Christmas party by saying a particularly exuberant hello to a friend who happened to be holding a glass of red wine (on a carpeted floor). Oops.

Besides walking, I've also been reading for pleasure, cooking interesting things, and knitting a scarf after finally catching on to my friend's patient instruction. I'm using wool from local farmers who use no dyes, so you choose your yarn by the name of the sheep. How cute is that?

I tend to think the word "balance" is over-used, but the last few days have reminded me what a difference it makes when I take good care of myself. I don't just mean food - actually, I haven't been eating nearly as well as I usually do, but there's no point depriving myself at Christmas - but rather taking the time for rest and thinking and the things I love. And I've still got a week and a half off!

Prednisone fail

2010-12-12T17:53:00.000-05:00

The snow has abated, school has re-opened and I've written two of my six exams. Now I'm preparing to write property tomorrow; I think it'll be the hardest. It will be good to get it out of the way.

I'm also actively ignoring the fact that the prednisone push my rheumatologist ordered to help get me through exams did absolutely nothing.

Thankfully, I've been okay typing anyway - I think the adrenaline carries me through. Still, the fact that the prednisone had zero effect has left me feeling a little uncertain. It's been years since I've taken prednisone, and it always did the trick in the past. Now, even the high dose I took for several days last week did nothing to de-puff my hand or lessen the pain and stiffness in my wrists and elbow. All it did was keep me up at night (not that I needed any help with that).

I don't see my rheumatologist until February. I know she'd happily see me earlier, but I think I'd rather take that time to start paying closer attention to my symptoms and think about what, if anything, I would like to change in my treatment.

We both know that Enbrel isn't doing as much as it used to. I'll have been taking it for eight years this January, which is a long time in the world of biologics. Add to that the fact that I stopped and restarted twice - once for dental surgery and once when I had trouble getting coverage - and my rheumatologist thinks its effects have been weakened significantly. But she also thinks patients experience diminishing returns with each new biologic they try, and I don't know if I really want to make that change yet.

Oh well. Three exams left, and then two weeks' holiday full of food, fun, and Henry - more than enough to keep my mind off my joints.

Snowed in

2010-12-07T15:40:00.001-05:00

Entirely. Our mayor is considering calling a state of emergency.

I'm currently curled up with my books and laptop in the pub around the corner from my building (I just drank an entire pot of Earl Grey, which may not have been the best idea). I had to get out of the house, even if I am just a block away.

The pub is one of the few businesses left open. Banks are closed. Shops are closed. All city buses have been pulled off the roads. Schools are closed - so far, my first two law school exams have been cancelled. Ambulances and police cars are getting stuck in the snow. The plows just aren't able to keep up, and many who drive can't actually find their cars (and once again I'm thankful for my underground parking!). We've gotten more than a meter of snow, and it doesn't look like stopping soon.
As much as nobody was prepared for this one, I kind of love snowstorms.

I love the muffled silence that descends over the city.

My campus.

I love the sense of spontaneous community. The groups of strangers joining together to push cars - and ambulances - out of snowbanks, neighbours lending shovels, walkers exchanging laughs when they pass each other on the narrow sidewalk tracks and neither wants to force the other into the snow.

I love the texts that have been flying back and forth with friends and family members - do you have enough food? did you get home safely?

I love being forced to walk everywhere, even though climbing around in waist-high snow isn't exactly great for my hips.

Welcome to winter, I guess! (And one more photo from today for good measure):

A few of my favourite things

2010-12-05T17:29:00.000-05:00

This week's Patients for a Moment theme centres around the things we can't live without - things that empower us to live well with chronic illness. What a cool topic: I’m excited to read your lists and see what helps you through each day. It also forced me to stop and think about what I really need. Sure, there are lots of things I want (like maybe some new black heels?), but there are also a few things I really wouldn’t want to go without. I’m thankful I don’t have to.

Here they are:

1) A tub! This is always on my list of must-haves when I’m apartment-hunting, which hopefully I won’t be doing again for a while. My ex-boyfriend lived in a cute basement apartment with a brand new kitchen and a big back yard, but… only a shower! I love my tub; sometimes I just need to soak my achy bones.

2) Extra pillows. I sleep on my left side. Two pillows go under my head, one props up my right hip, and I stick the fourth beside me so I can keep my right hand elevated. Me + only one pillow is not a pretty picture.

3) Indoor parking. Luckily, I’ve got this at my apartment, too. Otherwise, chipping the ice off of my car in the mornings would do me in before I even started my day.

4) My suction-powered bottle opener. Not a daily necessity, of course, but a wonderful tool nonetheless. My parents got me this for Christmas last year. You pop it over a bottle of wine, twist the screw down into the cork (which requires next to no effort) and then the cork just magically gets sucked out of the bottle. Before this, I couldn’t open a bottle of wine myself (and there may or may not have been tears the few times I tried).

5) Tiger Balm. I use this when something, usually my back, is really hurting and likely to make sleep difficult. I don't know if it actually eases pain, or if it's just that the mildly pleasant tingling sensation is enough to distract me, but that it does, and it usually lasts long enough that I'll fall asleep before it wears off. My massage therapist started using it on me and I liked it so much I picked up a tin for myself. (When I was a kid, I used to think it was made out of actual tigers, and swore I'd never buy any. It is not.)

So there you have it - considering how hard and how much it's snowing today, I'm extra happy to have number 3! What are your must-haves?

Ideas, please!

2010-11-30T13:45:00.000-05:00

My first law school exams begin next week (yay?). Actually, I'm not overly stressed; I'm enjoying my classes and feel, for the most part, like I'm on top of things. (Well, maybe excepting property.) I'm also really, really looking forward to my Christmas holiday.

All of my exams will be written on my computer. That isn't a special accommodation; it's just how it's done now, which was a pleasant surprise. So, I haven't had to ask for extra time, or for permission to type my exams instead of hand-write them.

Even though I don't have to worry about holding onto a pen, I'm still a little anxious about my hands holding up for six two hour exams. Other than popping a couple of Tylenol before each one, do you have any suggestions for making sure I don't stiffen up in the middle of writing?

I'd love to hear your tips!

Getting my money's worth

2010-11-18T18:47:00.000-05:00

(Well, technically the Ontario government's money.)

My necklace was in knots and I couldn't undo it with my fumbly fingers. Thank goodness I'm usually too lazy to stick my Enbrel syringes directly into the sharps container. Hey, it worked!

A poem for Remembrance Day

2010-11-11T12:25:00.001-05:00

Wilfred Owen was a British poet and soldier. He was killed just days before the end of the First World War, on 4 November, 1918. His mother learned of his death on Armistice Day.

Dulce et Decorum est

Bent double, like old beggars under sacks,
Knock-kneed, coughing like hags, we cursed through sludge,
Till on the haunting flares we turned our backs,
And towards our distant rest began to trudge.
Men marched asleep. Many had lost their boots,
But limped on, blood-shod. All went lame, all blind;
Drunk with fatigue; deaf even to the hoots
Of gas-shells dropping softly behind.
Gas! GAS! Quick, boys! -- An ecstasy of fumbling
Fitting the clumsy helmets just in time,
But someone still was yelling out and stumbling
And flound'ring like a man in fire or lime. --
Dim through the misty panes and thick green light,
As under a green sea, I saw him drowning.

In all my dreams before my helpless sight
He plunges at me, guttering, choking, drowning.

If in some smothering dreams, you too could pace
Behind the wagon that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil's sick of sin,
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs
Bitter as the cud
Of vile, incurable sores on innocent tongues, --
My friend, you would not tell with such high zest
To children ardent for some desperate glory,
The old Lie: Dulce et decorum est
Pro patria mori.

1918

For the first time ever...

2010-11-08T22:38:00.000-05:00

After a visit with Dr. Cufflinks last week (looking dapper as usual in suit, silk tie and coiffure) I have stopped a drug and not replaced it with another one.

No more Coversyl for me; my beta blocker, Atenolol, appears to be just exactly what I need to keep my blood pressure down (not to mention noticeably ease my shortness of breath). It's another score for Dr. C, who suspected my two previous BP meds weren't controlling my hypertension effectively because they weren't treating what he believed to be the root problem. He was right, and for the first time since I started taking medication as a child, I have actually dropped one without adding another one in.

It's a good feeling and a stark contrast to the very inexact science of medicating rheumatoid arthritis. With RA, we take some of this and some of that, and each medication might help to combat a particular symptom - but rarely all of them, and almost never with complete effectiveness. I can't help thinking how cool it is to be on a drug that's actually doing exactly what it's supposed to do, and doing it so well I feel noticeably better.

The medication game is one of the most frustrating aspects of chronic illess. Yes, meds are getting better - though it's no longer as effective as it once was, I don't know where I'd be without Enbrel - but I still often feel like we're just throwing whatever we can grab at a handful of varying and inconsistent symptoms, hoping something will stick. Most illnesses are like that to some extent, I suppose. Even a particularly bad cold might require something for a sore throat and something else for congestion. Still, it's nice to feel like I've flipped a switch with Atenolol. I've found something that works, and I'm using it - no further research, contingency plans or backup drugs necessary.

Multitasking

2010-11-04T19:10:00.000-04:00

I think I've discovered the secret to staying on my elliptical longer than 10 minutes: balancing one of my school books on the panel in front of me and reading while I work out.

Not the easiest thing to do with a giant book, but last night I stayed on for 40 minutes, working hard the whole time and reading about the Manitoba Egg Reference. (Who says Canadian constitutional law is boring? We asked our Supreme Court about eggs!) When I finished, I was so pleased with myself I did 20 minutes of yoga.

I've never been the meditative type; when I try to zone out, my mind just churns will all of the important things I could be doing instead. This way, I feel like I'm being extra productive, and the workout goes by much faster.

Tonight I've got a very serious case of boredom and restlessness, so I'm going to try it again. Wouldn't it be great if I could do this three or four times a week?

Ow

2010-10-30T15:14:00.000-04:00

I fell in the tub (again). I lost my balance getting out of the bath, landing on the side with all of my weight on my upper arm and a string of obscenities following.

I love a hot bubble bath, but I hate getting in and out. Because my parents live in what used to be my grandparents' house, the bathroom is set up perfectly with bars to help you haul yourself out of the tub. No such luck in my apartment. And most of the time, I don't need it, but the trouble is I don't know in advance whether I'm going to have trouble.

It's strange how we can feel so good doing some things and, at the same time, have such trouble doing others. After I'd finished swearing, I proceeded to get ready for a Halloween party (I was a zebra) and then went out and spent three hours dancing. If I'd had to get up and down off the floor, though, I'd have had serious difficulty. I guess that's part of "invisible" illness: I look like I can do anything.

I am bruised and a bit banged up, but not so very bad in the end. Even so, I think I may stick to showers for a while.

Yoga!

2010-10-21T21:44:00.000-04:00

(First of all, thanks everybody for your comments on my last post. My immediate reaction was negative - who loves the idea of getting pregnant in a hospital? - but some of your comments, and the words of some friends I've talked to here at home, have helped me see that this is also a really positive thing. It means I have choices, and it means Dr. Sneakers will be on board to help me have a healthy pregnancy and a healthy baby one day. Those are definitely good things. Thanks for helping me see them.)

And now, yoga:

I went to my first class on Monday night. It was a lot of fun, and just the right mix of relaxing and challenging.

The yoga centre I went to is adorable. It's got a little lending library, and you can make a cup of herbal tea and bring it into the class with you. There are little lounges to sit and talk or read in, and the studio is big and bright and quiet.

I talked with the instructor beforehand about my mobility limitations - fused wrists and knees that won't bend all the way are the most problematic for yoga. He told me just to do what I was comfortable with, but that he'd keep an eye on me and if I seemed to be having trouble, he'd come over and help.

I'd been nervous that everybody would notice me modifying the poses when I couldn't do them, but I had forgotten how welcoming and easygoing yoga classes usually are (it's been a few years since I've been to one). Nobody cared; in fact, I don't think anybody gave me a second glance. And I definitely heard a few ouch's from some of the others in the room.

I shoved a blanket under my bum in child's pose when I couldn't bend my knees far enough, and in poses that require hands on the floor, I went down on my elbows and forearms instead. There were one or two times when I thought, "okay, a few more seconds of this is all I can take," but in the end I was able to do just about all of it.

In fact, the only thing I really had trouble with was the 10 minutes of relaxation at the end. As usual, my mind was racing. I'm hoping that comes with practice.

I'm looking forward to my next class!

Messing with my head

2010-10-18T13:25:00.001-04:00

This morning I met with Dr. Sneakers, his nurse practitioner, two genetic counrsellors and an electrophysiologist. It was something of a surprise and very good of them, actually. Dr. Sneakers, who continues to rise in my estimation (especially after he used the word "homies" this morning), thought I'd appreciate a chance to sit everybody down and ask as many questions as I liked.

Of course, it ended up being more about how much they don't know than about anything really concrete, but that isn't anybody's fault.

Towards the end, Dr. Sneakers told me he wanted to ask a strange question. I figured he'd ask whether I'd experienced some oddball symptom or other. Instead, he asked me whether, when I decide to have a family, I would want to know which of my eggs carried my genetic mutation so that I could choose to have the "healthy" one implanted.

Holy. What?

I said I didn't know, and I don't. I have no idea. It's not a decision I'll have to make for a few years, but I think it will be a very difficult one.

What if my parents had had that choice? What if they'd decided not to implant the egg that turned into me? I've learned a lot from illness. But then again, I've been luckier than my uncle and the thousands of other people who die suddenly from inherited arrhythmias.

(Also, if I do choose to have "healthy" eggs fertilized and implanted, the expense is currently not covered under our healthcare system. One round of implantation would cost about $2,000. The genetic counsellor argued - persuasively, I thought - that the government might do well to realize that paying for women to implant healthy eggs would actually save them a lot of money down the line.)

Anyway. As Dr. Sneakers said, "it really messes with your head."

I knew pregnancy would be hard, but I thought most of the big decisions would involve choosing to accept a risk or a burden myself, not choosing whether to pass one on to a child.

I guess it's a good thing I'm starting to like Dr. Sneakers. I think I'm going to need him.

Is pain making me antisocial?

2010-10-14T17:44:00.000-04:00

I had a lovely Thanksgiving weekend. Lots of good food, time with family, Henry-time, and sleeping in.

But. I was sore. Really sore, and really tired. And sometimes I was a bitch.

We had Thanksgiving dinner at my aunt's house along with relatives I hadn't seen in several years. It was great to see them, but I often found myself wanting nothing more than to sneak away from the table and curl up in the spare bedroom. I took every opportunity to excuse myself from the action to pace around in a dark hallway or even to slip outside and distract myself with one of the neighbourhood cats. When dinner had finished and everyone was sitting around with coffee, I was out in the yard, stiff and aching and wishing I could crawl out of my own skin.

I wondered later what they must think of me, and then I thought about all the other times RA turns me into a hermit (or worse, makes me snippy and impatient). Even my Mom notices how snarky I can get when I'm really feeling rotten. "Pain makes you depressed," she told me on the weekend, "and that makes you grumpy."

What pain really does is make me selfish. It turns me sour and makes me impatient with anyone who doesn't get it. It makes my bed or my bathtub seem a million times more attractive than a night out with friends. I suppose that's natural; when our bodies hurt, it's a lot harder to look outside of ourselves.

When I'm being reasonable, I just give up on trying to be nice and focus on being quiet. It's the Bambi philosophy: "If you can't say anything nice, don't say anything at all." Sometimes I think we need to be alone with our pain. We need to separate ourselves, even momentarily, from family and friends who wish they could fix it. We need to let ourselves think the worst, because putting on a happy face when you feel like shit is exhausting.

Sometimes I need to go into my bedroom and soak a couple of tissues. Once I've done that, I can tell myself to buck up. I can remind myself that there have been, and will be, many days of feeling better. (There will! And this week, there have been.) And then I can be nice.

Happy Thanksgiving, Canadians!

2010-10-11T17:36:00.002-04:00

I hope you're all eating something yummy.

Toronto

2010-10-07T10:40:00.000-04:00

Uh oh. Every time I go to Toronto - especially in the fall - I want to move back.

I stayed with my friend N. She lives in the neighbourhood surrounding Casa Loma, a Gothic Revival mansion-castle-thing which is itself kind of odd-looking. The neighbourhood, though, is lovely. Its streets are quiet and lined with Victorian row houses, old trees and little front gardens. N walks everywhere - to amazing restaurants, used bookshops and little independent grocers. Being there even made me miss the subway; living in a small city, as I do now, doesn't enforce a sense of community in the same way Toronto and other larger cities do. Sigh. I miss it.

I did a lot of walking this weekend, and I'm happy to say I held up really well. I've also been easing myself back into an ellyptical routine, trying for 10-15 minutes a night.

We handed in our first papers at school yesterday, and now I'm scrambling to catch up on the reading I let slide while I wrote it (and obsessed over it). But, I have no classes on Fridays and it's Thanksgiving here, so I've got a four-day weekend in which to do it. And sleep in!

Fall weekend rambling

2010-10-01T13:17:00.000-04:00

I'm off to Toronto today for a much-needed girls' weekend. I love Toronto in the fall, and I'm hoping the rain holds off so we can do lots of wandering.

I'm gradually settling into a school routine that's allowing me to get my work done while still getting a bit of time to myself. I had a good talk about study methods with my constitutional law prof, and we looked at ways I can get around using my hands too much. As for school itself, I really, really like what I'm learning. I'm finding legal history and philosophy especially fascinating, and I'm excited to get into the upper years where I'll be able to choose courses like Literature and the Law, Roman Law and Canadian Legal History.

I'm still swollen, but not any worse and maybe even a bit better. I've also had another lung infection that's left me feeling a bit wiped out, but this time I started using my inhaler right away and it seems to be clearing up. It was nevertheless a wake-up call - now that I'm spending 8 hours a day cooped up with two hundred other students and professors, I'll need to be careful about catching things.

For now, though: nap, some work, and then to Toronto. Happy weekend, everyone.

An evening walk near my parents' place. Fall is my favourite.

The stare

2010-09-21T21:09:00.000-04:00

A rarely-discussed symptom of rheumatoid arthritis, I think "the stare" is something most of us do. It's that already-defeated, frustrated look we give things we know are going to hurt us, but that we have to tackle anyway. "The stare" varies in duration and intensity, depending upon the item at which it is directed.

Some things I've been staring at lately:

Jars.
Doorknobs.
Socks.
Shampoo bottles.
Un-chopped vegetables.
Laundry.
"Constitutional Law in Canada," both because of its subject matter and because it is over a thousand pages and weighs approximately nine million pounds.
My balcony, which seriously needs to be cleaned.

That said, I did actually wash my kitchen floor today, and while I am not reading my Constitutional law book, I am reading another, similarly large one. I did, however, stare unsuccessfully at a jar of mustard tonight. It ended up going back into the fridge unopened.

I've got an internal debate going on about whether or not to go and see my rheumatologist. I suppose it's not entirely internal - my Mom and my rheumatologist's NP have both joined in - but I find myself thinking the same things every time the question comes up: it takes too much time, and there isn't really anything to be done about it anyway. I'll write more on this sometime soon.

For now, the swelling in my hand has gone down a little and I'm looking forward to a good night's sleep tonight. I've been picturing my bed all day!

Law school, year one: One week down, 31 to go

2010-09-14T13:22:00.002-04:00

It's my second week of law school, and so far, things are going reasonably well. I feel insanely busy, but I think that as the material, and my schedule, become more familiar things will settle down at least a little. I've got lots to say but not a lot of time to write it today, so for now, a list will suffice.

So far, I like:

The Mature Students' Club, and mature students in general, among whom I think I can say I am making some good friends.
My small-group professor. He'll be our go-to guy throughout the year, and he is rather frightening. He looks like a biker, shouts all his lectures, doesn't allow note-taking, has no qualms about singling students out for humiliation, and locks the door to late students exactly one minute after class begins. He's so extreme it's hard to dislike him. He's like someone portraying a law professor: fun to watch, as long as I stay on my toes.
Not having to sit at a desk from 9-5 every day. I do lots of desk-sitting, but the flexibility of having different classrooms and libraries, and time in between to study and eat, feels great after my office job.

I do not like:

Having school spirit rammed down my throat. I really don't need drunken, face-painted pseudo-sports to make friends.
Extraordinarily heavy books that hurt my hands - this is actually proving to be a significant problem. I will have to sort something out.
My workload. Woah.

More soon!

Marshmallow

2010-09-07T14:07:00.000-04:00

I hope I didn't speak too soon the other day, writing about the fact that my RA seemed to be on a relatively even keel. Since then I've been in more pain than normal, and, most unusually, my right hand has really puffed up.

Poop.

I'm puzzled (okay, and annoyed). It's probably been ten years since I've had visible inflammation like this, and maybe longer. I'm not scheduled to see my rheumatologist until February, but I went in and had bloodwork done today, so we'll see what shows up there. I'm not sure what else we could do, aside from switching to another biologic. I definitely don't want to up my methotrexate dose, and I already take 1000mg/day of Naproxen. For now, I'm just giving it cold water baths and trying not to do too much with it.

Motivation

2010-09-03T14:15:00.000-04:00

I haven't written much about my health lately, and that's because, thankfully, there hasn't been much to say. I'm through the worst of the flare I was stuck in this spring and back to feeling my usual: no serious pain, just a sort of fragile feeling that's always there, a base level of pain and stiffness and the knowledge that if I were to bump into something it would hurt a whole hell of a lot.

The danger with feeling so "normal" is that I tend to get complacent. When there's no big ugly RA target to aim for, it's easy not to aim for anything.

I went to church to sing on Sunday. I know every single person there, and most of them have known me since birth - they know my parents and they knew my grandparents, too. This means I'm fair game for all sorts of well-meaning, but sometimes not very tactful, advice and opinions.

After the service, I went out into the foyer to pick something up. As I was standing over a table with various community notices, a woman I know, but have never exactly been close with, came up behind me and said,

"You know, I'd like to lose weight, but I'd never want to look like you."

I didn't know what to say. I think I said something idiotic like, "It's okay - I eat! I like eating!" Like I had to prove I wasn't starving myself just to spite her.

Now, that was rude. I think weight in general is off-limits with people you only know well enough to say hello to in the street. And I haven't really let it bother me, but I will admit I've been paying slightly closer attention to what I see in the mirror since then. And while I don't think it's as bad as that, I suppose I do look a bit... well, frail, which was apparently what this woman was trying to tell me in her own subtle way.

I don't think I need to get bigger or smaller, but I do think I need to get stronger. I also know that I need to do it right, by finding exercises that work for me - that I'm capable of doing but that also provide enough of a challenge to make a difference. The first part of my plan is yoga. I've been thinking about it all summer, and last week a friend passed along a 70% off (!) coupon to a fantastic yoga centre in my city. It was the push I needed, and I signed up for five introductory classes. I'm a little worried that I'll be a lot weaker than everybody else there, but I need to start somewhere, and I'm hoping that having other people there with me will keep me motivated.

The classes don't start for a couple of weeks. Until then, I'm going to do my best to exercise and to eat properly, and enough. And maybe avoid that woman.

Paws vs. hands

2010-09-01T10:50:00.000-04:00

Henry illuminates an age-old problem:

A lull

2010-08-29T14:19:00.001-04:00

I am bored out of my tree.

I've been finished work for a week now, and school can't get here fast enough. While my parents are on vacation, I'm house- and Henry-sitting for a relaxing two weeks in the country. I think I've had just about all the relaxation I can stand.

I'm plowing through books - memoirs, philosophy, history and "An Introduction to the Study of Law" - taking Henry to the beach, pestering my friends while they're at work, and watching a whole lot of "The Antiques Road Show." I got my hair chopped short and have started looking for a new apartment, just for something to do. I'm trying to learn to knit, but have so far been entirely unsuccessful.

I'm oh so much happier with a full schedule and something to challenge me.

And now, since I've got nowhere to go and no one to see, I am going to mow the lawn. I need to be done by four, because ""The Antiques Road Show" is on.

Addendum: There is a snake in the basement. A real one. Wah.

Who's up for a hip roll?

2010-08-18T11:40:00.000-04:00

I have always found doing physio on my own to be almost unbearably boring. I'm alright working with a physiotherapist, but send me home with a list of exercises and you can bet I won't keep up with them. I have a hard time imagining anything less stimulating than sitting in a chair and slowly bending and straightening your wrists, or lying on the floor with a can of tomato juice under your knee (I can't remember why we employed the can of tomato juice, but I recall it vividly). Gradually arcing my back to the right? No, thank you.

Recently I've discovered that hip exercises are just about the worst. With apologies to the Arthritis Society, who really wants to do something called a "hip roll"? Especially when this is the accompanying animated gif:

Really?

I can't be the only one who finds these exercises painfully dull, and it's even worse when they're not only boring, but challenging and painful as well. I know they're important and I know that doing them regularly could help me retain range of motion, but I can't help wishing they were somehow more exciting.

All I can think of is trying to do them while I watch television. Any other ideas?

Do you keep track of your symptoms?

2010-08-10T17:52:00.000-04:00

Patients with chronic illness are frequently told how important it is to keep track of their symptoms.

Unfortunately, I'm just not that organized. I've tried keeping a diary of symptoms, but I've never actually stuck it out longer than a week or two.

Instead, over the years I've fenced off a little corner in the back of my mind to keep half an eye on these things. That means it can take me quite a while to make connections between symptoms and triggers - like, for instance, the fact that my heart rate is faster and my shortness of breath is worse when I don't eat enough, which I figured out this week - or even to realize that other symptoms are progressing or getting better.

I think this probably makes me a bit of an annoying patient. When I tell my doctor a symptom began long before my last appointment, she no doubt wonders why on earth I didn't bring it up before. Most of the time, I just haven't put two and two together. I suppose there's an element of denial in that (and, okay, probably an element of laziness, too). When I'm in pain, I simply don't want to think about it. Nor do I particularly want to start writing it down and feel like a whiner, even though I know this would help out my doctors. It just seems depressing.

What about you? Do you keep track of arthritis pain or other symptoms? How? I know some of you are more organized than I could ever hope to be!

Writers' block and waiting

2010-08-05T15:51:00.005-04:00

In case you haven’t noticed, I’ve got a major case of writers’ block. That’s in part because, now that I’ve told work I’m leaving, I’m working hard to get everything off my plate and sorted out before I leave in a few weeks. I’ve been getting my student loans figured out (yikes!) and arranging to continue writing for my current employers in a freelance capacity.

I’m still waiting to see Dr. Sneakers about these “new developments” in my genetic testing. At my last defibrillator check, apparently my “fluid levels” were shown to have been in excess of the “normal” level for over a month, so we’re going to talk about that, too. I don’t even know what that means, and when I Google it, all I can find are articles about heart failure which I don’t particularly want to read. I’m operating on what I think is the obvious assumption that if they thought I might have heart failure, I wouldn’t just be waiting around to see my doctor. Plus, I feel fine.

Meanwhile, I’ve been getting strict with myself about creating a bedtime routine, and am actually sleeping really well. My back’s been bad lately, so I do a few minutes of gentle yoga before bed. Then I have a hot shower, get into bed with a cup of Sleepytime Extra tea, put on my sleep cd, and spend a few minutes writing in a journal and reading something pleasant and not too absorbing (P.G. Wodehouse makes perfect bedtime reading). I still sometimes have to pop a pill, but I’m not spending hours lying in bed before falling asleep. I really want to make it a priority to keep that up once school starts, which means actually getting work done during the day. We’ll see.

I'm looking forward to being finished work, and to the two weeks I'll have off between work and school. Part of that will be spent house/dog-sitting at my parents' place in the country. I'm excited for all of the golden retriever snuggling.

One Lovely Blog

2010-07-26T13:48:00.000-04:00

I'm late, late, late getting around to this, but I'm very excited to pass on the "One Lovely Blog" award from Nessie at Lipstick, Perfume and Too Many Pills.

I don't want to just repeat all of the wonderful blogs that have already been listed by other winners, but here are a few of my favourites:

1. Mariah at From this Point. Forward. is my age, hilarious, and a law student. She's showing me it can be done (which is something I really need to hear right now!).

2. Wren at Rheumablog is wise and the best, most uplifting blog commenter you could ever wish for. She always makes me feel better, and her posts are full of joy, even when she's in the midst of a flare.

3. Sara's Single Gal's Guide to Rheumatoid Arthritis was my introduction to the world of RA blogs. I love her positive outlook and it's wonderful to read about all of the fun and interesting things she's doing.

4. Cathy's determination to take control of her health is truly inspiring. Her blog, The Life and Adventures of Cateepoo, reminds me that ultimately, I'm the one in control - and she always reminds me to stop and appreciate the little things.

5. WarmSocks at ∞ itis is a wealth of information. Her great ideas help me stay on top of things when I'm feeling overwhelmed.

6. Laurie at Frozen Woman: Life with Rheumatoid Arthritis is funny, creative, open and busy! She reminds me there's much more to life than RA (I also get to commiserate with her over our mutual loss of hair. Sigh.).

There are lots more wonderful blogs on the list to your right, and I hope you'll check them all out if you haven't already. This is a really strong community, and we're lucky to have each other.

Should I take that as a compliment?

2010-07-21T17:34:00.000-04:00

A few years ago when I was first diagnosed with HCM, I had blood taken at a Toronto genetics clinic and sent to Harvard for analysis. An "unknown variant" was discovered - a genetic mutation that hadn't been seen before but that was quite possibly responsible for the cardiomyopathy, especially as, on further investigation, a number of family members were shown to have the same mutation.

I thought that was that, but according to a phone call from Dr. Sneakers' office, the Harvard people uncovered some new information just in the past month. ("Haven't they told you about this yet?" his nurse asked. No.) I'd had no idea that the research was ongoing, although I suppose I should have assumed it would be.

Anyway, to make a (very) long story short, Dr. Sneakers now thinks my genetics are "too complex" for a biopsy to provide any useful information at this point.

So, no biopsy. Which is fine, but I'm feeling totally out of the loop and not enjoying that very much. What does he mean by "too complex"? And why does a test I had for HCM influence his decision to perform a test investigating my supposed Brugada Syndrome? His nurse promised me an appointment with him just to sit down and talk about what he's learned.

I feel like I'm reading a book written in another language, and somebody has ripped out a bunch of really important pages just to make it even more confusing.

Maple peppercorn chicken, and an update

2010-07-19T19:30:00.000-04:00

Ok, hip. Seriously. What is your deal? We are not friends anymore.

I'm cramming in a bit of overtime before I take a few days off later this week, two to relax and one for my biopsy. I am, despite my stupid hip, feeling better little by little. Toronto was great fun. I just don't like this limbo; I want school to start. I am also very seriously contemplating a pretty financially irresponsible trip to Seattle to visit a good friend, just because I bloody well feel like it.

Meanwhile, I am eating again (last week there was one day during which I ate A GRAPE. Total. Which is kind of hilarious in its own way. I mean, what did I think? "Well, I can't stomach dinner, but I'm going to eat this grape. That'll help.").

Since I am eating more than grapes now, here is a yummy chicken recipe I adapted from BBC Good Food. And here is what it looked like on my plate:

Maple Peppercorn Chicken

1 chicken breast
Peppercorns, crushed into fairly big bits
1 small shallot, thinly sliced
1 clove garlic, crushed
2 tbsp sherry (or balsamic vinegar or wine or whatever else you've got, I would think)
2 tbsp maple syrup
Some chicken stock
Olive oil

Heat the olive oil in a pan over medium-high heat. Brown the chicken breast and remove from heat, then turn it down to medium-low. Sautee shallots, garlic and crushed peppercorns until shallots have softened. Add the sherry and deglaze the pan, then add the maple syrup and a bit of chicken stock, and simmer until syrupy. Put the chicken back in the pan and simmer for another 6 minutes or so until chicken is cooked.

I served this with roasted asparagus, mushrooms and potatoes, and a giant G&T.

Dogs!

2010-07-12T21:27:00.000-04:00

I mentioned in my last post I sometimes wish I was this guy:

What a life. He JUST WANTS TO SHOW YOU THE SLIPPER. He is very serious about it.

Starting tomorrow, I'm taking care of a friend's Jack Russell mix for a few days. Apparently, he likes to sleep in people beds, under the covers, curled up against you. Can't wait. There's nothing like a dog in your bed to make you feel better.

Then, on Thursday, I'm visiting a friend in Toronto for sushi, long walks and a pedicure. I can't afford it (like, really can't afford it), but I'm doing it anyway.

Arthritis-wise, I'm feeling good. My cardiac biopsy is next Friday at 7:30 a.m. (ugh) and we're hoping to be able to do some poking around while they're in there to learn more about any scarring I might have. I'm looking forward to seeing what they can find.

Blue

2010-07-06T13:44:00.001-04:00

This post is not illness-related at all, but I'm having a blue day.

I've had what you might call a boyfriend (although I hate that word) for the past few months. It was good, but complicated and now, over.

I'll be 27 in September, and believe me, I know that's still young. Lately, though, I can't help feeling like most of my friends have got their ducks in a row, or at least have asked the ducks to begin forming a nice single-file line. My ducks, meanwhile, are still in their eggs, and I don't even know where the nest is.

What if I never even find the fricking nest?!

I'll be 27 and just starting a school program that's going to take me 3 years, plus a year of articling. 27 and single. 27 and only vaguely aware of what I want out of life, and not really sure what any of it looks like. I've realized only lately that I do want the house, the husband, even the baby. All of that feels impossibly far away.

I feel light-years behind everybody else. Wah.

Update: AND I just got back from signing papers at the bank for a holy-shit-enormous student loan. I would officially like to switch lives with my dog for a while: all he has to worry about is carrying people's shoes around the house and making sure his tennis balls never, ever leave his line of sight. I could deal with that.

Update

2010-07-06T11:13:00.000-04:00

So, that MIBI scan? Not for me!

I learned a bit about the test over the weekend and became even more suspicious than I'd originally been; it sounded like it had nothing to do with any of my conditions. So I called Dr. Sneakers' receptionist yesterday morning and asked her to please double-check, as I'd never been told this was a test I would need.

"Ohhhh, right!" she said, almost immediately. "These files are such a mess. This isn't for you after all!"

Good thing I called. Definitely not a good thing that they're mixing people up. I'd totally have gone and done it, and for no reason!

Grumble, grumble.

Meltdown mode

2010-07-02T16:48:00.000-04:00

I got home early from work today to a message on my phone from Dr. Sneakers' receptionist about my "upcoming July 6 appointment." As far as I knew, there was no such thing, and when I called back it turned out that, indeed, they were only just getting round to booking it for me now. Thanks for the advance notice.

I'm having something called a MIBI scan ("a what?" I said about four times before she spelled it for me); radioactive dye is injected into my heart and pictures are taken. Fasting, no caffeine for 24 hours, and comfortable shoes so I can hop on the treadmill and they can all be blown away by my athletic prowess.

I don't know why I'm doing this, but fine, whatever. It's another day off work, more parking to pay for, more IVs, more lying around thinking about the food I'm not allowed to eat. It's old news by now, but for some reason, today it was enough to cue a total meltdown. Tears, a bit of stomping around, pajamas at 4:30.

I know my doctors are doing their best to give me as many answers as possible. I guess I'm just sick of feeling like a sick person. Especially a sick person who doesn't get told about things in advance.

How struggle makes us stronger

2010-06-28T11:44:00.000-04:00

I'm muddling through an essay for a scholarship application for RA patients. I hate this kind of stuff; it feels too much like self-pity, and when I don't want to do something, I tend to run up against some serious writer's block. I ran across a quote from Jonah Lehrer this morning on Andrew Sullivan's blog that's given me a much-needed dose of inspiration. I think you'll like it, too:

For me, the lesson of stuttering is that obstacles can also be advantages, that who we become is deeply influenced by what we cannot do. [...] The secret is to struggle through, because the very act of raging against a disadvantage generates its own set of skills.

And now, back to work.

Hips

2010-06-21T15:11:00.000-04:00

I overdid it last weekend with a long afternoon rollerblade. Lots of fun, but a week and a half later my hips still aren't thanking me. I spent a few hours yesterday floating around my parents' pool. Weightlessness felt awfully nice.

I'm restless at work. This is, in part, because of my hip - I'm not really down with spending eight hours in a chair these days. I've been making lots of trips to the printer and down the street to Starbucks, and have left early a few times so that I could finish work lying down. I haven't told anyone why; "I'm leaving because it hurts to sit" would necessitate some sort of an explanation, whereas "I've got to run to an appointment" is suitably vague. Thank goodness I work in a flexible office.

I'm looking forward to school in a few months. I know I'll be busy, but school-busy has always treated me better than work-busy. I'd rather have piles of reading and writing that I can do from home - even from bed if I need to - and with short breaks than have to spend eight or ten straight hours at a desk or in meetings.

I'm currently house-sitting for a relative. Last night I slept for three hours because there was a cat on me (and when I tried to shut the door on him, he howled). I'm working on a cat contingency plan for tonight.

Noise

2010-06-15T10:39:00.000-04:00

It was my regular 6-month ICD interrogation. I go in, lie down and chatter with thenurses while a computer communicates with my defibrillator, gathering information on what it’s recorded or done over the months since my last check-up. It’s easy and usually uneventful.

As I lay there this morning, the nurse furrowed her brow at the screen.

“What were you doing on December 13^th at 9:30 in the morning?” she asked.

I had no idea, of course, but apparently my device recorded a 42-second run of atrial fibrillation.

“It’s definitely not a-fib,” she said. “It’s noise on your lead.”

“Noise?” I asked.

“Something big happened to your device. If you were a man, I’d have said you must have been using a jackhammer. Or if your device were any older, I’d be worried about a lead fracture.”

I asked how she knew it wasn’t actually a-fib if the device said it was. “I just do,” was her answer.

She made some phone calls, informing me I’d need a chest x-ray and that the doctor on call would want to see me. I waited on the bed, thinking I’d call into work and let them know I’d be later than originally thought.

But then the doctor walked in. I'd never seen him in my life. Barely glancing at the screen, he said, "you're fine."

The nurse seemed surprised. She asked if he was sure, and whether he didn’t want a chest x-ray.

“No. She’s fine.”

“Are you really sure?” she asked again.

He looked at me this time. “You can go home,” he said.

And then he left. Maybe "ran off" would be more accurate.

The nurse looked at me.

"I guess you can go,” she shrugged.

**

What the hell?

I did leave, but I left feeling irritated and unsatisfied.

Patients, have you been in a situation like this? Doctors, why oh why do you contradict nurses (or other doctors) without explaining yourselves? Should I have been more assertive? Should I have demanded an explanation? I probably shouldn't worry about it, but I'm always wary of crossing the line into annoying-hypochondriac-patient territory. For now, I've just decided to wait and ask Dr. Cufflinks about it when I see him.

I know these people are busy, and I also know they don’t always have all the answers. But if you just don't know, or if you have a good reason for disagreeing with another care provider, then tell me. This is the kind of thing that drives people to Dr. Google.

Still here

2010-06-14T21:46:00.000-04:00

Really!

I just got through a conference I've been planning for over a year, having friends stay for a few days, some long and late work events, and various other junk.

On the plus side, my blood pressure is so low Dr. Cufflinks has suggested cutting my Coversyl dose in half, and when I left my rheumatologist's office last week after a very positive appointment, she yelled, "See you in a long time!" That's what I like to hear. My broken rib, while still achey, is recovering nicely.

I will return to regularly scheduled blogging after some naps.

(Also: I was at an awards banquet tonight. One of the recipients was named Hugh Jass. I laughed so hard I cried. It was awesome.)

Treats, please.

2010-06-03T14:07:00.000-04:00

3 attempts at getting blood (involving considerable fishing) + Enbrel = 4 needles in 1 day.

There was a time in my life at which this would have earned me some serious loot. As it stands, I had to settle for a handful of jube jubes I nicked from the board room.

Maybe I should have cried?

Cardiac biopsy

2010-05-31T12:00:00.000-04:00

I've made the decision to participate in my EP's research study, so I'll be having a cardiac biopsy within the next several months.

The test will involve taking a number of small samples of right ventricular tissue from my heart and sending them on to a specialist in Ottawa (I keep picturing little bits of my heart being stuck in the post). While the biopsy is mostly for research purposes, it could tell me a number of things, including whether I'm able to pass on Brugada syndrome to any children I may have. Dr. Sneakers is also hoping that, since I can't have an MRI with my defibrillator, he'll be able to use the procedure as an opportunity to look for scarring related to my HCM.

We will, hopefully, kill a small flock of birds with one stone.

Here's what I've learned from my piles of paperwork: similar to my EP study, an incision will be made in my groin or neck (I'd vastly prefer my groin - since I'm going to be awake, I'd rather people were fussing around down there than right in my face. I think it's going to be neck, though). A catheter will be guided into my heart. It will have a scissors-like handle at one end and a little snipper at the other. I'll be awake and able to see fluoroscopic images of my heart on screens above my head - by far the coolest part of my EP study.

I'm excited both to learn more about my condition and to have the chance to participate in research. I've benefited so much from research in my lifetime - I've gone from a little kid eating crushed up aspirin every day and sitting out gym class to an active adult whose disease activity is, comparatively, very well controlled. I've got a box in my chest that could save my life one day. I've got drugs that keep my heart rate and blood pressure nice and even. Pretty lucky.

So that's that. Not technically a whole lot of fun, but we'll learn from it, and I'm looking forward to that. And I'd never pass up on opportunity to munch on some hospital food.

Infused (And, Dr. Sneakers Redeems Himself)

2010-05-25T14:04:00.001-04:00

When doctors keep wandering by, stopping at the foot of your bed, looking through your ECGs and muttering, "interesting," it is safe to assume it's going to be a long morning.

Today was my procainamide infusion test. I showed up bright and early (and hungry) at the hospital, was given a bed and a hot blanket (I flipping love those hot blankets) and had my IV placed by a very nice nurse. He even heeded my request to please put it in my arm, as my hands are feeling rather poorly this week.

The nurse who performed the study was named Andrew. He explained that he would infuse the drug for 30 minutes, and that I would stay in bed for an hour afterward to recover. Then he hooked up my ECG and blood pressure cuff, and set up his chair right next to me to monitor the entire thing. It was nice to have him there to chatter to, and it helped take my mind off cheeseburgers. I was starving.

My blood pressure dropped a fair bit and I felt quite dizzy, but other than that, the procedure wasn't terribly unpleasant. However, Andrew kept printing off ECGs and raising his eyebrows at them; the electrophysiologist on call, whose name was Bobby, popped over every few minutes to look at them, too. It was funny to watch; Bobby kept talking about how "interesting" they were and Andrew, who clearly wanted to keep me calm, would look up and me and say, "interesting, but not SCARY. NOT SCARY." Bobby went to fetch a med student to look at them as well. I don't know how many times I heard the word "interesting."

Because the procainamide had induced changes in my heart rhythm, Andrew next infused another drug to help empty my kidneys and liver of the first one more quickly. This one made me feel a bit disgusting, and in the end I was glad of the hour-long recovery period.

Finally, Dr. Sneakers came in. I was skeptical; I hadn't particularly liked him the last time we met. I like him much better now. First, he read through my entire chart. Then he read through the results of the morning's study. Then he sat down beside me on my bed and hashed it all out.

The results, he said, were "interesting" (surprise!). They were not what he had expected. The last time I'd seen him, he had said that me having both HCM and Brugada Syndrome would be like being struck by lightning twice; my positive response to my 2008 procainamide challenge was, he felt, just a fluke. This morning, though, I tested positive again. He compared the results with the abnormal-but-not-sure-why ECG I had in September and with my last drug challenge, and told me it appears I do indeed have Brugada.

I was quite surprised. There was a split second where I thought, "oh, come on. This too?" I suppose he'd had me convinced as well that I didn't really have it.

He stayed with me for a good twenty minutes, discussing the implications of the diagnosis. I'm to be careful of fevers. I've got a list of drugs to stay away from. But I've also already got my defibrillator, and there will be no changes to my treatment. He also asked me to think about having a heart biopsy; this will be primarily for research purposes, but it will also help me to know more about my chances of passing on the disease. I'm considering it, and leaning toward saying yes.

I have a lot to think about, and probably to write about, too. For now, though, I'm home, tired and headache-y, but also, perhaps strangely, happy that my defibrillator is there for a reason.

I need a book!

2010-05-20T20:37:00.001-04:00

I've been advised to bring a book to my infusion test on Tuesday. A nice way of telling me to plan on being there for a while, I think.

I'm in the middle of The Girl with the Dragon Tattoo (although I've already read the end - one of my very worst habits) and enjoying it, but it's massive and heavy and not really ideal for shoving into my purse.

What should I read? Something sprawling and Victorian and on my list of have-to-reads, like Middlemarch? A good mystery? Something new and popular?

What are your favourite books?

Saturday morning

2010-05-17T20:14:00.000-04:00

I am finally feeling much better. Not just a little better, but almost completely back to normal. Except for the rib, which is still pretty sore, I'm great - not coughing, breathing normally, and not exhausted. Just in time for all the rain we've been having to finally stop.

Saturday was the first really fun, not-sick-at-all day I've had in a while, and I took it all to myself. I cancelled some half-hearted plans I'd made with friends, and then I slept in, lingered over my tea and the paper, and made my way to my city's Saturday antiques market.

I've been looking for teacups and falling in love with nothing. I got a set of these, which I adore (despite the crappy photo), for $12:

But I'm most proud of these. I haggled for them, which was a thrill, and got them for next to nothing. They're from a series of eighteenth century engravings called Cries of London, which I'd read about before. I flipping love them, and I can't wait to hang them up:

Then I got a cup of tea and an absolutely blow-your-mind apple fritter - it had warm apple slices and custard - custard! - inside it. Apparently these things are quite well-known, but I had yet to be initiated.

All in all, it was a very successful first day of not feeling like garbage. Thank you all for your good wishes over the past month!

How you know it's getting old

2010-05-14T11:43:00.000-04:00

When you fumble with your syringe and it lands, uncapped, needle down, on a carpet covered in dog fur - and you just pick it up, blow on it and shove it in anyway.

Well, either it's getting old, or I'm just really, really lazy. Probably the latter, but hey - a little dog fur never hurt anybody.

The start of my modelling career

2010-05-12T13:51:00.000-04:00

We had photos taken for our company website today.

I'm still sick-ish. Much better, but not great. I feel like I could sleep for days. But, I dressed accordingly and came into the office. From (well-meaning, I know) co-workers, I heard:

"Your eyes are swollen! Are you ok?"

"Woah - you're so skinny. You've been really sick, huh? ..Not that I'm saying you look sick!"

"You look exhausted!"

From the photographer, I heard:

"Alriiiiight. Let's make this dangerous!"

I'm pretty sure the only thing remotely dangerous about me today was the chance that I might fall over on someone, but I giggled nonetheless.

I took yesterday afternoon off to sleep and am doing the same today. Tomorrow, I plan on feeling like a million bucks.

Very, very impatient

2010-05-07T16:08:00.001-04:00

Yesterday, quite suddenly, breathing started to hurt. Coughing (which I am still doing a lot of) really hurt. Getting in and out of bed or rolling over was ow-ow-ow-ow-ow.

My first thought was pleurisy, which I'll admit I'm unreasonably paranoid about since my first highly unpleasant experience with it. I went back to my doctor.

Not pleurisy, but possibly a cracked or bruised rib from so much violent coughing.

But, after almost a month of this, I've now got a steroid puffer to use over the next week. If I'm still coughing then, I'll have another chest x-ray (no, thank you). Meanwhile, I skipped my methotrexate injection last night and emailed my rheumatologist to let her know.

**

In truth, the main reason I've been so grumpy about my health lately is that there are so many good things happening right now, and I want to be able to enjoy them properly. I feel as though I'm only half-experiencing things. I know many of you have been there, or are there even now.

First I flared. Then I couldn't eat. Then I caught this virus. Then I couldn't talk. Then I started getting nosebleeds. Then I did whatever I've done to my ribs.

Whose body is this? It doesn't feel like mine.

**

When I'm feeling better, which will hopefully be very soon, I will blog about much more interesting things. Promise.

Update: We can now add "coughing up blood" to the list of fun things I'm doing. On the upside, this steroid inhaler is pretty awesome. I might marry it.

Good things

2010-05-05T09:45:00.000-04:00

My body feels out of whack. Still hacking away - I can talk reasonably well now, but when I tried to sing last night (I've missed three weeks of lessons), no sound came out. I've had a couple of other infections, lots of nosebleeds, and a consistently upset stomach from the junk I've been taking for my throat. I'm frustrated with myself, and my confidence in my ability to muddle through is dipping a little.

That said, of course, I am muddling through. I only missed two days of work. I drove myself and a friend to Toronto on Sunday to see Wagner's The Flying Dutchman, which I did not cough through (plus, there's nothing like Toronto driving to give my self-confidence a bit of a boost). I haven't been on the elliptical in a while, but I've been on lots of walks.

So, good things:

I emailed Dr. Cufflinks' secretary this week wondering if there was some way I could ask him briefly about a new drug I may be taking. He wrote back himself about an hour later, with a long explanation of the drug's mechanism, his opinions and my options. After moaning about doctors and appointments and tests last week, I felt very good about the relationship I have with him.
It's spring! Leaves are out. I'll be birdwatching with my Dad on the weekend as the warblers fly north.
My infusion test for Brugada Syndrome is soon, which means I will either know more or know that I won't likely get any answers, and either is better than wondering.
I'm loving my old-fashioned Enbrel, sans preservative (I know I'm a big baby, but I hate that stuff!). Now, without it, I'm rotating injection sites like a pro. I don't even have to say the F word.

And I know there have been many good things happening with you, too. Cakes, lilacs, laughter, even wonderful baby news.

There. That's better.

Currently accepting applications

2010-04-28T17:23:00.000-04:00

If I could have a single wish today, what would it be?

ONE doctor. One doctor with all the answers.

A rheumatologist, cardiologist, electrophysiologist, and GP all rolled into one fabulous doc, who just happens to practice in a clinic with a blood lab, imaging department and pharmacy. (While we're at it, we could throw in some decent magazines and free food, too.)

So I forgot, living in I'm-so-busy-who-cares-how-I-feel land, that shit still happens. My lost voice has become a chesty, rattling, wheezy cough. My inability to use the phone or make myself understood has ceased to be interesting and become incredibly annoying.

Off I went to my usual general practice clinic. My doctor said, "you're on rather a lot of methotrexate. That's a recent change, isn't it? Were you planning to discuss this with your rheumatologist?"

Well, no. That's why I'm here seeing you.

I know it's silly and stubborn, but I will never stop wanting just to be one of those people who can go to the bloody doctor and come away with an answer instead of a diary of appointments that, were I wealthy, might induce me to hire a personal assistant.

Chest X-ray.

Bloodwork.

Follow-up at 8:30 Friday.

A promise to speak with my rheumatologist.

I left in an absolutely foul mood, convinced (and I still am) that the x-ray and bloodwork were a massive overreaction and a waste of everybody's time. I called my Mom at the pharmacy where she works, hoping she'd lend some moral support to my inclination to give them both a miss so I could get some work done. No dice. (And my pharmacist, to whom she ratted me out, backed her up.) Damn.

So I spent much of today in waiting rooms when I should have been writing. I'll be late for work on Friday. I'll be fielding emails back and forth between my rheumatologist, her NP and my GP.

I really want that personal assistant. And if she could bring me a glass of wine and maybe fill in at my office for a few days, I'd make sure she got a hefty Christmas bonus.

No talking!

2010-04-26T16:33:00.000-04:00

I had a bad cold or throat thing all last week, and, as usually happens, now that I'm feeling much better my voice has gone. I mean totally gone. I can't make any noise. It just sounds like air coming out.

So here I am at work, feeling fine, and not making a peep. It's been frustrating, but also kind of oddly relaxing. Nobody's asking me for any answers; I'm just sitting quietly. I've gone for walks with friends, and they've talked and I've listened. It's been interesting. (Although I will be annoyed if this continues - and it's irritating not to be able to use the phone.)

(Meanwhile, my appetite is totally back and I feel great. Tonight I'm making peanut chicken.)

Illness, blame, and living well without a cure

2010-04-24T10:31:00.000-04:00

I received a survey about HCM last week from my genetics clinic. Genetic counselling has been both fascinating and reassuring for me. My Dad, uncle, aunt, cousins and I have been found to have an “unspecified variant” - a genetic mutation which has not been previously seen but which, because we all have the same one, is very possibly responsible for our disease. I've learned a lot - including how much is simply not known about congenital cardiac conditions - and I've also got a support network I can call on in the future if I decide to have children.

My counsellor is working toward her PhD, and her survey explores patients' emotional responses to HCM. It gave me a lot to think about. Does HCM depress me? Not really. Does HCM make me feel anxious? Again, not really, now that I’ve got my ICD. Does HCM make me angry? I had to admit, I am sometimes angry at the way it’s changed my family.

What struck me most of all were the questions about what patients believe to be the cause of their HCM. There were lots of reasonable options, like “heredity.” But you could also check boxes such as “my personality,” “my attitude toward life,” or “my emotional state.” I wonder how many will answer “yes.” Do people believe that something inherent in their personalities or their world views made them sick? That illness is a kind of punishment? That seems terribly sad.

Hereditary illnesses make peculiarly good fodder for the kinds of emotional messes the survey hints at. There can be a lot of guilt for parents who pass them on and for family members who owe their treatment and comparative good health in part to the death of a loved one. And with any illness, hereditary or not, there is the “why.”

I’m glad people are doing this research.

I confess to being a bit skeptical about the idea of “cures” for much of what ails us. I know it makes for great marketing when an organization says it’s striving for a cure, but – and no, I’m not a total cynic – I’ve never really been convinced that that idea is helpful or realistic. I think research into treatment for many of these illnesses is of much greater import. I also think that along with that must come research into ways to help patients live better with illness.

I hope the results of this survey enable my counsellor, her team, and maybe even the cardiac specialists who deal with these disorders to better understand their psychological complexity. I don’t see a world in which nobody has a heart problem, but a world in which more people deal with their heart problems positively would be a great thing.

Who goes to your appointments?

2010-04-20T14:46:00.001-04:00

A parent? A spouse or partner? A friend? Do you go on your own?

I've gone on my own since I was about eighteen. Of course, as a kid, I was accompanied by one parent or another to every appointment and procedure. When I was eleven and stayed overnight at the hospital, my Mom stayed with my for the first night and only left on the second because I was so out of it I wouldn't have cared either way. They were even there for bloodtests.

Since then, I've almost always gone by myself. One parent or other was there for major procedures, but everything else - scans and other tests, rheumatology and cardiology appointments - I've experienced on my own, including the times when I've heard some not-great news. This was sometimes born of necessity, as when I lived in Toronto, and sometimes simply because I don't mind it. It's simpler, and it allows me to say to myself, quite honestly, "I can do this on my own."

So what's the issue now? Well, the letter I received from the hospital yesterday informs me I've got to bring someone with me to my procainamide infusion. I'd been planning on showing up, having the test and then driving myself to the office. Not an option, apprently.

Sure, one of my parents could drive the hour-and-a-half up to the city to take me, but that's a hassle. That leaves friends - friends I've never allowed so concretely into this part of my life. All of my friends know I'm dealing with health issues, but they don't very often get to see them. What am I afraid of? Putting people out. Showing weakness. Getting news I don't like and having to process it in someone else's presence.

On one hand, I'm leaning toward asking my parents. On the other hand, I know there are friends who would say yes in a second, and maybe this is my chance to let them.

(Yikes.)

Sunday Bits

2010-04-18T12:09:00.000-04:00

I had an email from my rheumatologist's NP that I've been approved for Enbrel coverage until August, 2011 (and after that, it should be easy to approve again). Phew. So grateful to my wonderful, fabulous, fantastic and amazing rheumatology team.

My procainamide infusion is finally, finally scheduled for May 25. I'll fast after dinner the night before, and then show up at 9. I had one of these pre-ICD, so I'm not particularly nervous, but I am a little apprehensive about going another round with Doctor Sneakers. And I want to know what they'll do with my defibrillator during the test. Will they shut it off? Googling "what happens to my ICD during drug infusion testing?" isn't helping. I know, I'm a dork.

My appetite is in and out. Last night I had an egg and toast, but couldn't do breakfast this morning. I've lost seven pounds this week. My parents have been eyeballing me at mealtimes this weekend - this isn't the first time this has happened, and I know it drives them crazy. As frustrating and uncomfortable (I feel totally deflated) as it is not to be able to eat, they still make me feel safe and warm and fuzzy.

(And yes, my doc and pharmacist are blaming the increased MTX. Here's hoping another week or two will set me straight.)

And finally, I'm loving learning more about all of you through the Sugar Doll blogger award so many have been nominated for. You're all so interesting, and it's great to get to know you better beyond illness.

Have a lovely Sunday.

Ten Things

2010-04-16T13:39:00.002-04:00

A very big - and very surprised - thank you to Laurie at Frozen Woman: Life with Rheumatoid Arthritis for nominating me for this:

I get to tell you ten things about myself, and nominate five other fabulous bloggers to tell you ten things about themselves. Here are mine:

1. When I was a kid, I wanted to be a spy. I kept a notebook with me and filled it with my neighbours’ comings and goings – stuff like, “6 pm: the Carmichaels are eating hot-dogs in their backyard.”

2. It’s a running joke in my family that I never finish a drink. There’s always a tiny bit left in the bottom of the glass, but they’ve given up trying to change me.

3. I don’t cry over sappy things, but I do cry over beautiful things.

4. I birdwatch.

5. I had a student job at a provincial park that occasionally necessitated me getting a large-ish snake out of its terrarium and showing it around to kids. Its name was Billy, and it would slither up my arms and around my neck.

6. I was desperate for a horse as a kid. When I was about 11, my best friend called to say her parents were buying her one. I hung up on her, burst into tears and didn’t speak to her for days.

7. I insert my dog’s name into popular songs and sing them to him.

8. I can only sleep in a bed – no couch- or car-sleeping for me.

9. People always think I’m younger than I am. Not long ago I was looking at furniture and sat down in a chair that was way too big for me. The saleswoman said, “don’t worry, sweetie – you’ll grow!”

10. When I was in Rome, I went to the house where Keats died. I waited until everybody was out of the bedroom, reached past the “Don’t Touch” sign and put my hand on his pillow. I don’t think he’d have minded.

Now, to pass it on again, I get to nominate five other bloggers:

1. Sara at The Single Gal’s Guide to Rheumatoid Arthritis.

2. Cathy at The Life and Adventures of Cateepoo.

3. Megan at Sticks and Stones.

4. Britta at Chronically Young.

5. Robin at The Truth About JRA.

Over to you, ladies. I'm excited to read your ten things!

Advice, please!

2010-04-14T13:27:00.000-04:00

I need some input from you smart people.

I'm continuing to feel good, but my appetite is most definitely not returning. If anything, it's diminished even more. What can I eat, and how can I force myself to eat it, when I'm beyond queasy? Yesterday, I had:

Half a piece of toast with a couple of avocado slices
A few bites of spinach salad
6 chicken nuggets
A glass of milk, some gingerale and some water

That's barely one meal. I ate an orange this morning and a cup of tea, and now I'm determined to pick through a cafeteria salad plate over the course of the afternoon. Eating feels awful. I'm not interested in anything, and when I do eat, I feel sick (and have actually gotten sick a couple of times). I'll be seeing my parents on the weekend, and they always watch me like a hawk to make sure I eat enough. So, I want to fix this.

I know this can't go on forever, and that eventually things will right themselves and I'll eat a real meal. In the meantime, though, I need to eat enough to get through the day.

What can I do? Any foolproof anti-nausea tricks or favourite foods when you're feeling ill?

Better

2010-04-12T22:02:00.000-04:00

Bit by bit, I'm evening out.

I've had two weeks of Naproxen at 1000mg/day, and two 1cc injections of methotrexate. Walking is easier, getting out of bed is easier, and I've got a little more energy. I haven't much of an appetite, but that will come back.

I bought insulin syringes for the MTX, but they're so thin and fiddly. When I drew the medication and pulled the plunger all the way out, they were too long for my hands. My first two injections were thus painless but more than a little messy and fumbly. I bought some fatter syringes this week. And yes, I'm being careful with alcohol.

I'm also switching back to the old-fashioned mix-your-own Enbrel, so that I can inject twice a week. My rheumatologist said it's worth a try. (And I'm all for it, since it means no more of that preservative.)

Work is nutty, and I've only been sleeping about five hours a night, so in all I'm pretty happy with the way I'm feeling. Just in time for spring.

Talking about pain

2010-04-08T09:21:00.000-04:00

The Globe and Mail this week noted a recent study that found talking about pain can actually heighten our experience of it:

“Far from being soothing,” Richard Alleyne reports in The Daily Telegraph, “words and counselling can actually increase the intensity of physical pain, a study finds. Warnings such as ‘this may hurt a bit’ or ‘you might feel a little pain,’ can be counterproductive and actually compound feelings of discomfort, it is believed. The study discovered that certain pain-associated words such as ‘tormenting’ or ‘gruelling’ stimulate the pain area of the brain – even when no pain is actually administered.

I usually find the opposite to be true. When I'm warned by a nurse or doctor that something will be unpleasant, it usually ends up being not quite as bad as I expected. When I haven't been warned in advance, on the other hand, I think the surprise can sometimes make pain or discomfort seem worse. Of course, no doctor has ever told me that anything would be "tormenting" or "gruelling." A nice honest "you're going to feel pretty gross for a few minutes" (to quote my EP) is extremely helpful.

What do you think? Do you want fair warning, or does that make it worse?

Disclosure, (not quite) one year later

2010-04-04T23:19:00.000-04:00

When Sara asked for submissions on the subject of disclosure to this week's "Patients for a Moment," I thought back to a post I wrote not long after I started blogging. I've always been uncomfortable talking about illness, and in it I tried to figure out why. I think I've learned a fair bit since then, so I've revised it here with the addition of some of that (very) slowly acquired knowledge.

My goal is always to strike a balance between letting people know that what I have is serious enough to affect my life, and ensuring they understand that I'm not crushed by it. But after 24 years with RA, I'm still not great at disclosing illness. I usually end up fumbling somewhat awkwardly through that initial conversation, very often insisting that, yes-I-have-RA/HCM-but-no-really-I'm-absolutely-one-hundred-percent-fine! Don't worry about me! Sure, I'll help you lift those boxes!

Whatever the situation, the realization that I'm going to have to tell somebody about some or all of my "health stuff" always looses a few butterflies into my belly. I've realized lately, though, that the people I'm disclosing to now are not the people I was disclosing to in grade school. They're grownups, and while I still get silly responses now and again, I'm no longer met with the kind of taunting I sometimes experienced as a child. Slowly but surely, I think I've begun to feel my way to a somewhat less bumpy disclosure experience.

Here are two things that make it easier:

Control. That means not waiting until I'm on the third hole, golf club in hand, and realizing there's no way I'll finish the next fifteen. (I totally had to look up how many holes are on a golf course, by the way.) It means I need to decide who to tell and tell them on my own terms, not when circumstances force me to.

Openness. I'll take curiosity over awkward silence any day. I can let people know explicitly that they can ask questions, or I can just show them I'm okay with talking about illness.

Sometimes I think I don't give people enough credit. It's true that we put up with frustrating misperceptions and inconsiderate - or sometimes just plain rude - treatment. But if I didn't have RA, would I know anything about it? Would I know the just-right thing to say to someone who had it? Probably not.

I think I've said before that it's unrealistic to expect people to know exactly what you mean when you tell them you have RA, or HCM, or any of the other reams of diseases out there. I do, however, think it's possible - and important - to make the open discussion of illness more socially acceptable. We're part of that.

If we can show people we're not uncomfortable discussing our needs and limitations, we won't just be doing ourselves a favour.

Willpower

2010-04-01T15:21:00.000-04:00

This post is going to make it sound like I'm a heavy drinker, which I am not. However, working in PR and media seems to involve a lot of going out. Lots of lunches, dinners, and cocktails, sometimes with clients who drink like fish and expect me to, as well. It's fun, but it means I'm exposed to more alcohol than I've ever been in my life.

Don't you want to drink this?

I won't lie. I love a glass of wine with dinner or a lovely cold gin and tonic. But as we all know, drinking and methotrexate do not a healthy combination make. My rheumatologist has always told me that one to three drinks per week is safe, but starting today, I'm on more methotrexate than I ever have been. I need to be more careful.

Today at lunch, when everybody else ordered beers and cocktails, I ordered a Diet Coke (I know Doctor Grumpy would approve). In half an hour I have a drinks meeting (see what I mean?!) and I am planning to once again order something non-alcoholic. Even though it's warm and sunny out and Jo, who is just as enamoured of G&Ts as I am, will be sitting next to me sipping one.

(First MTX injection tonight. If there are any disasters, or if anything otherwise notable occurs, I shall report back.)

Slow-cooker beef shanks with piles of vegetables

2010-03-31T11:28:00.000-04:00

I work a block from my city's indoor farmer's market, which makes it easy for me to keep the kitchen well stocked with fresh stuff. There's a popular organic butcher with a wonderful selection of meats, but much of said selection is, unfortunately, restricted to those elements of the population who are capable of spending $13 on a chicken breast (i.e. not me).

I bought a cheap-o beef shank ($4!) there this week, though, in the hope that a day in the slow-cooker might soften it up. I was not disappointed - by the time I was ready to eat it, it fell apart at the touch of a fork. Here's what I did to it:

Beef shanks (I used one to make two servings), cut into pieces
Whatever veggies you have on hand (I used parsnips, red pepper, tomato, carrot, celery and potato)
1 onion, chopped
Minced garlic
A bit of olive oil
Red wine
Beef stock
Rosemary
Thyme
Flour or cornstarch to thicken

I piled the solid ingredients into the cooker, mixed in the herbs and a little olive oil, and covered with liquid - whatever ratio you like of wine to stock. When you're almost ready to eat, spoon some of the liquid into a sealable container, mix in a bit of flour or cornstarch, shake and pour back into the stew to thicken.

I started it out on low, but I think what made the difference was the fact that I came home in the middle of the day after an out-of-town meeting and turned it to high. If I'd left it on high all day the vegetables would probably have turned to mush, but those few hours on high made the beef extra tender.

(To make things even easier, and since I hate hate hate getting up in the morning, I usually chop all of the vegetables the night before and leave them covered in the fridge.)

It was yummy with roasted Brussels sprouts on the side.

Rambling: methotrexate, fertility, drugs, life

2010-03-29T11:35:00.000-04:00

There is a woman I work with at the Arthritis Society who has a young girl with JRA. She is very sweet, but occasionally given to hyperbole.

She often (really - all the time!) talks about how difficult it was to put her daughter on methotrexate knowing that it "will probably make her infertile." The first time she said this, I nodded calmly, but in my head, I went, "WHAT?! I'm infertile? Nobody told me!"

Well, no. I am probably not infertile, and neither are you, even if you've been on MTX for years. It is important to be off the drug before conceiving, as MTX can cause serious birth defects or abortion (yes, that still scares the shit out of me). Pregnancies should be carefully planned, and your rheumatologist should be along for the ride. But according to my own doc and the sources I'm citing below, while a woman's ability to conceive may be disrupted in the short-term, risks to long-term fertility are minimal.

This study notes:

The risk of infertility appears low even after high-dose MTX. One review reports a 97%conception rate in women 1 year or more after cessation of MTX treatment.
[...]
On the basis of the limited data available, fertility after low-dose MTX would seem to be only marginally affected.

This one finds that effects on fertility are time-limited and generally resolve after a relatively brief period.

Okay, so it still sucks. But not as much as it could.

Regarding medication, my philosophy is this: I am going to take whatever I need to in order to live a life that is otherwise healthy. My meds may occasionally leave me feeling unpleasant, and I may not be certain of all of their long-term effects - but I am certain of the long-term effects of the things they enable me to do: exercise, eat well, and enjoy my life.

Being "otherwise healthy" is important to me. Doctor Cufflinks once asked me to remove HCM, RA and scoliosis from the picture and think about how I felt about my health. And I had to answer, pretty good.

Meds allow me to feel like garbage and believe that maybe on Tuesday or Friday or Saturday I won't. Meds allow me to get out and do things, to be with people, to be ambitious, active, busy - all the things I probably would be without illness.

I think that's the most important thing I can do for myself.