Neat-o

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

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

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

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?

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!

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.