Singing beyond our bodies

The Christmas season is, among many other things, a time to hear and sing some of the loveliest music that has been written.

My singing teacher invited me to the Festival of Nine Lessons and Carols at the Anglican Cathedral as they marked the beginning of Advent last night. My sister came with me and we drove through the rain, past rows of illuminated evergreens announcing the season in a nearby park. Inside, the Cathedral was warm, dark and quiet except for the whisper of coats being shed. Candles flickered along the aisles and in the transepts.

The service was entirely sung, except for the nine lessons - readings interspersed between the antiphons my teacher chanted, carols sung by the choir, and hymns in which we all joined.

I have always been comforted by the experience of group singing. I won’t get into what I believe and don’t believe, but there is nothing quite like adding your voice to hundreds of others in a song that absolutely fills a building to bursting. Few things strike me as so sublime.

As I listened last night, I wondered if there were others in that cathedral with rheumatoid arthritis. If there were people there with cancer, with MS, recovering from surgery, grieving loss. How many of us were in pain? But our harmonies lifted above all of that; they rose, with the great ringing of the organ, into the rafters and into the night. Beyond all of us.

I love to sing because it is such a physical act; but I also love to sing because the music I produce is incorporeal. It thrusts out and away from these sore, stiff bones, this heart that doesn’t know quite what to do with itself. Singing with others reminds me that we are all so much more than our bodies. We are so much more than the things that hurt us.

The rain has turned to snow this morning. My walk to work was cold, but the sun is shining.

Irrational Rant: Sports

I know it doesn't make sense to feel angry at others just because they can do things I can't. But why do sports have to be everywhere, all the time? Why are they shoved in my face? Why am I always having to explain myself? Sorry, can't do that - but hey, have fun without me.

I work with a bunch of writers and graphic designers. People who took English, philosophy, fine arts. Why is everybody so damn sporty? Since starting at my office, I've explained my way out of golfing, curling, football and baseball. Disastrously, I did not excuse myself from bowling in my first week on the job, a decision which was detrimental to my pride as well as my joints.

Then there are the professional organizations. Every other "networking" event seems geared toward althetics of one sort or another. There are always golf tournaments or games of volleyball happening. I am always saying no.

Everybody thinks that sports are a great way of bringing together people who don't know one another, and turning them into great friends.

My experiences at Orientation Week during my first year of university remain some of the most humiliating of my life. Admittedly, it was my own stupidity that got me into them in the first place. "Alright," I remember thinking to myself. "The University Olympics can't be that bad. I'll go, make an effort to make friends, and I'm sure I'll surprise myself and have a great time." Not so. I wound up doing, or attempting to do, the "crab", sliding on my back across a stadium floor while a guy with a megaphone (really) yelled "YOU! You're doing it wrong! NO BUTTS ON THE GROUND!"

I'd love to respond to every invite with a lengthy sermon on why sports are not the inclusive, full-for-all activities most people seem to think they are. But I don't. I know, after all, that most people enjoy them. But when I'm stuck telling a 60-year-old that I can't go curling because my knees and hips just won't allow it, it sucks.

I have an idea. If you want me to network, just plop me down in a restaurant or a bar, give me some free food and wine, and I'll do it. But don't expect me to be picking up a golf club anytime soon.

Woo...hoo?

Now that I am not vomiting all over the place, I think a beta blocker was a very good idea.

Suddenly, everything requires so much less effort. I can get out of bed and turn on the shower in the morning without having to take a break in the middle. I can go for a walk and it doesn't feel like a horse is sitting on my chest. My heart doesn't beat so hard it makes my shirt quiver against my chest.

For years before I knew I had heart problems, I thought RA had just made me "weak". I ascribed my laboured breathing and racing heartbeats to arthritis, thinking it just made everything more difficult. Of course it's still true that I'm not nearly as strong as I could be without RA; I don't move nearly as freely or as gracefully as I could if I didn't have it. But at least now my slow, sore body can breathe.

(And there's another excuse for not exercising down the drain.)

**Time for an update - I spoke too soon (just like RA Guy described last week). I've been out of breath all night. But, most of the time, I really have been feeling much better. And Dr. Cufflinks did say we might have to increase the dose. So, I'll qualify that woo-hoo, but I'll still say it.

The appetite returns

With some help from the loot I picked up at my hometown's Christmas Bazaar this weekend, which included white chocolate cranberry bark.

I vividly remember the first "real" food I ate after starting methotrexate. I was 11, and for my first two weeks on the drug I could hardly stomach anything. I'd munch a few saltine crackers or slurp a bit of chicken broth, only to throw it up again moments later. I spent school days lying in the sick room, occasionally visited by a sweet French teacher who called me pumpkin.

My parents were probably going out of their minds with worry, but I was too sick to notice.

One night, we went to my maternal grandparents' house for dinner. My grandmother was Czech, a round, four-foot-tall puff-pastry of a woman who thought that if you only took two helpings, you must absolutely hate her cooking.

She had made these little square noodles I loved and piled them up against a crispy wiener schnitzel. While everyone sat at the table eating, I lay on the gold-embroidered living room couch and moped. (My grandmother’s love of anything shiny extended to her furniture.)

My Dad came in with a bowl of noodles and sat on the end of the couch. “Babi made these for you,” he said. “They’re so good.”

He started eating them.

I thought about my churning stomach. I thought about all the days I’d spent in bed. I thought about the noodles. They’d be slippery, warm, flavoured with butter and the salty fat of the schnitzel.

I held out my hand, and he passed me the bowl. I ate them, tentatively at first, and then ravenously, making up for two weeks of nearly nothing.

My grandmother passed away eleven years ago, but I can still taste her cooking. There’s a box of her recipes, some in Czech, the English ones equally indecipherable due to her instructions to add “a little” milk or “some” flour. Nevertheless, we undertake them, sometimes disastrously, sometimes with rapturous success.

Maybe I’ll celebrate the return of hunger with a bowl of little square noodles.

OA vs RA

Over at The Doctor's Rheum, there's a consise and simple explanation of the differences between OA and RA. Very useful if, as WarmSocks does, you would like to clear up any confusion among friends, coworkers and family members who consistently mistake one for the other.

My Dad once told me, "Just make them try to bend your wrist!" A little extreme, but there are times when I would absolutely love to do that.

Better

I've started taking my Atenolol in the evenings so I can sleep through the nausea and dizziness. It seems to be working. My BP is slightly higher than it was before I discontinued the Norvasc, but still within normal range. I don't have much of an appetite, but I'm trying to munch on healthy things so that what I do eat will give me lots of energy.

The upside of the grossness has been that it's given me the opportunity to explain things to my colleagues, because apparently everyone thought I had H1N1 and I had to set them straight. So I guess that's a good thing.

I have a bit of a short fuse today. There's a public transit strike in my city (I realize this narrows things down quite a bit for anyone who reads Canadian news, but oh well), and it's like the world's worst drivers have converged here to see if they can't make things that much crazier. And some of my office-mates have been particularly perky (I don't do perky. It is not me). Also, my apartment is a mess but my hands hurt too much to clean it last night.

I'm glad it's Friday.

Inspiration

I'm so glad I popped over to Remicade Dream today and read her beautiful post on getting used to methotrexate.

I'm home on the couch after spending the morning at work, racing to meet a deadline so I could get out of there and back home to a toilet I'm not afraid to stick my head into.

Every once in a while, the world pops up in front of me to say "Hey - I know you've been having a pretty good time here, but guess what. You're still sick!" This is one of those times.

I suppose that's not entirely a bad thing. After all, there will undoubtedly be more times like this. There will be more days of feeling like garbage, more puffy joints, more medications, more surgeries to replace my defibrillators each time the batteries wear down. Each time I encounter something new, it's another opportunity to prove to myself that I can handle it. (Is that even a proper sentence? I don't know, and part of my job is copy-editing! Hence my leaving work early.)

This afternoon I'm going to nap, drink some tea, and think of all of you who have felt just exactly the way I feel right now - and worse. Thanks for the inspiration.

A brief break in transmission

I think blogging – or at least intelligent blogging – may remain at a minimum this week.

I'm dizzy and gross and still barftastic (that's for Doctor D), and feeling too fuzzy-headed to say anything really worthwhile. I'm at work, making occasional trips to the bathroom so I can put my head between my knees. What I really want to do is stretch out with my face on the cold floor, but don't worry. I am aware that that is disgusting.

I want to be at home working from the couch, but things are too crazy around here for now. Maybe later in the week.

As an aside, yesterday I met a friend for lunch at a sushi restaurant. I love sushi and I love soy sauce, and since I don't eat it often I usually give myself a get-out-of-jail-free card when it comes to the sodium overloading that occurs whenever I enter a Japanese restaurant. I happened to read the bottle yesterday, though. I ingested almost FOUR THOUSAND MG of sodium(!). Why does delicious food hate me?

I will let you all know if I throw up on my date. I'm not entirely sure how wise it is for me to be doing this on this particular evening, but we shall see.

Feeling fuzzy

I am feeling a little barf-tastic today, a little dizzy and a little foggy. My face is hot and tingly.

I'm not sure if it's the Atenolol, or what. Probably. But, I have the benefit of having been on lots of drugs and come out the other side of lots of early side effects. I shall persevere in the name of nice, normal blood pressure and a well-behaved heart.

(Although I do have a date tomorrow night, and I don't think it's in anybody's best interests if I vomit on him.)

A new study on chronic illness and relationships

The Globe and Mail has printed a story on a recent study that found women made up 88% of chronic illness patients "abandoned" (their word, not mine) by their spouses.

So-called "partner abandonment" can take a major toll on the health of the patient, says Marc Chamberlain, a neurologist at the University of Washington's Fred Hutchinson Cancer Research Center and the lead investigator of the study.

Patients who were separated or divorced were far more likely to use antidepressants and be hospitalized than those who remained married. They were far less likely to participate in clinical trials, treatment regimens and complete radiotherapy.

It's rather a sad article. Although I've never experienced the breakup of a marriage, I did go through the breakup of a serious relationship that I blame at least partially on tensions created by my cardiac diagnosis. I know I wasn't the easiest person to get along with, nor was I the most fun person at the party. I had just lost my uncle, and I'd been told by my cardiologist to avoid exercise at all costs. I had prescriptions for new meds, enough holters and blood pressure monitors to supply a small country, and trips to the hospital every few days. I dropped weight like it was going out of style and tiptoed around the city waiting to drop dead.

What I wanted more than almost anything was for my boyfriend to come with me to the hospital, even once. Or at least to let me cry sometimes when I needed to. He couldn't, he said, because he didn't like hospitals, and because he was dealing with his own workplace stresses.

When I think back on the relationship now, I believe he was selfish. At the same time, I guess it's hard to blame a 25-year-old with his eye on grad school for not wanting to spend his time discussing enlarged left ventricles with his weepy girlfriend.

Sometimes the prospect of meeting someone who won't be scared off by my medical issues feels a little daunting. That said, the knowledge that a future partner will need to be mature enough to handle hospital trips, pain and occasional crises means I'm going to be a lot more selective. I think that's a good thing.

I've heard stories of relationships strained and broken by the stresses of living with chronic illness. But I've also seen innumerable examples of love expressed through the commitment, gentleness and empathy of caring family members, friends and partners.

It's important that we all know we deserve nothing less.

Another Fantasy Gadget for RA Patients

I wrote some months ago about the fantasy device I used to dream about as a kid - a leak-proof, light-weight box that lets you walk around with a hot, flaring wrist floating comfortingly in cool water.

What I'd love now is a universal remote control that can open any door. My wrists and fingers ache each time I grip a stubborn doorknob or push vainly against heavy wood or metal. I take advantage of those automatic door-opener buttons when I can, but they aren't always available.

On top of the pain, it can be a little embarrassing to walk confidently up to a door with five or ten people behind you, only to be stopped short when you actually attempt to open it. I try not to show my relief too visibly when someone holds the door for me. I scoot in behind those with stronger arms and hands than me whenever I can.

Exercise

I’m doing it. I really am. Whether I’m enjoying it all that much is another story.

In a perfect world, I’d get my exercise with an hour-long walk every day. That’s often a possibility on weekends, but on weeknights I usually have to find another way, and I must admit I've fallen off the wagon lately.

My excuse has been that I’m just too busy, and it’s true that I’m out somewhere most evenings, but I still have time to jump on the elliptical for a few minutes. I just don’t.

So, this week I got decided just to suck it up and get back to exercising. My goal is not to lose weight, but to get a lot stronger. Here’s what I’ve been doing:

• I use the elliptical for 20-30 minutes a night. It’s my favourite machine, and my parents gave me one for Christmas last year, so I can use it with the tv on while my dinner is in the oven – no excuses. I like it because I can feel it working different parts of my body; calves, thighs, core, and arms. And of course, it’s low-impact on my joints –there’s none of the bone-rattling that comes with something like jogging, which I can’t really do anyway.

• I use a resistance band for about 10 minutes to stretch and strengthen my upper body, which is by far the weakest. I sometimes find it painful to hold onto the band – wrapping it around my wrists, so that I don’t actually have to grip it, seems to help.

• On weekends, I try to get those long walks in, usually with my Dad and crazy pup when I'm home visiting my parents.

My goal for the next few months is to integrate some core exercises into my routine, as per my orthopedic surgeon’s request. I really like the Yoga Journal website. You can browse through detailed instructions, with photos, of hundreds of poses and put them together in your own personal routine. I'm hoping I'll have so much fun doing that that it'll encourage me to actually do the exercises.

What's your favourite way to exercise? Indoors or outdoors? Love the gym, or hate it?

Blog-Fodder Bonanza Part II: Feeling Scattered

When I’m with a cardiologist, I feel like I’m poring over the scattered pieces of a really complicated puzzle while an hour-glass empties beside me. What symptoms are relevant? What symptoms are even symptoms? What have my other doctors told him, and what have they forgotten or neglected to communicate? (A lot, it turns out.) Even after what was a very productive meeting with Dr. Cufflinks on Monday, I awoke at 5 o’clock yesterday morning thinking, “shit – I knew I’d forgotten something important.”

It’s never like this with my rheumatologist. I know my RA intimately. Our relationship is 24 years old, after all, and I think I have a good understanding of the way this disease works in my body. There’s something strangely comforting about pain when it’s just doing what it’s always done. It feels right, somehow.

RA is also a more or less concrete diagnosis, or at least it has been for me. And when my parents learned I had it, I was far too young to agonize over the nuances of the diagnostic process. Now that I’ve lived with it for so long and come to know it so well, I wouldn’t doubt its reality for a second. I’ve got the pain and the permanent damage to prove it; you can't really waffle about fused wrists and crooked fingers.

Not so with HCM or whatever else may be going on with my heart. It’s only been three years since my uncle died; three years of contradicting statements from doctors, inconclusive procedures, specialists who don’t speak to one another and admissions that there’s just not a lot of concrete knowledge about many arrhythmia disorders. I value that honesty greatly, but at the same time, it’s not exactly ideal for someone like me who already tends to be a little on the obsessive side.

I know Dr. Sneakers doesn’t talk to Dr. Cufflinks about me – despite their working in such close proximity that the three of us bumped into one another in the hallway this week. He had no idea I’m supposed to be repeating my procainamide infusion, and the thing that woke me in the wee hours was the fact that I’m pretty sure he also doesn’t know about the abnormal EKG I had with Dr. Sneakers in September.

The good thing is that on Monday it finally felt like Dr. C and I moved beyond the “catch-up” stage. We were no longer just trying to make sense of all the tests I’d had at other hospitals, the medications I’d been prescribed by other doctors, the diagnoses given and then revoked. He was finally treating me, and he was treating me as he saw fit after getting to know me and reviewing my history thoroughly for himself. And he’d clearly been thinking and reading and talking about me between my last appointment and Monday’s. I’ve had doctors I’d been seeing for years walk into the room and ask me my name. It’s good to know he’s not one of those.

Yesterday, WarmSocks wrote about her journey with RA and her own somewhat fuzzier diagnosis:

When I first got sick, I was desperate for an answer: “What is wrong with me and when will I get better?” It no longer matters what the exact label is. Many of the autoimmune diseases are treated the same way. I’m taking a more pragmatic approach now: what do I have to do in order to function?

This is where I want to be. I think sometimes I conflate my RA and my cardiac conditions into one big lumpy “chronic illness” that I should have figured out by now. In reality, though, the whole heart thing is still pretty new to me, and maybe I need to recognize that it will be a long time before I feel as comfortable in the cardiology department as I do in rheumatology.

When I see Dr. Sneakers for my infusion test, I’ll just ask him to please, pretty please discuss the EKG with Dr. Cufflinks. And if it's 6 months before he knows? Oh well.

In the meantime, I shall attempt to take a chill pill.

Blog-Fodder Bonanza Part I: Time for a Beta Blocker

I saw Dr. Cufflinks today, and once again came away from the appointment feeling greatful that I've landed with him for my ongoing cardiac care. I think we're developing a mutually trusting and respectful relationship, and I think, also, that he makes a concerted effort to understand the emotional impact of cardiac diagnosis and treatment. He also never, ever rushes. (And yes, he was wearing the cufflinks, along with the pinstripe suit, the silk tie, the shoes I could see my face in and a couple of bottles worth of hair gel.)

He wanted to see me about my blood pressure and shortness of breath, and I brought along copies of the results of two 24-hour blood pressure monitors I've worn; one pre-medication, one post. I have to say I felt vindicated, because Dr. Sneakers had acted like he didn't believe I really had high blood pressure, but Dr. Cufflinks took one look at it and said "wow". Before meds, it averaged 152/112, and the peak for that 24 hour period was 182/115. Yikes.

He wants to treat the high BP as a symptom of HCM and not just as a mystery. So it's off the Norvasc and onto Atenolol, a beta blocker. The hope is that it will not only help keep my blood pressure low, but will help my heart chill out a little, too.

I'm a little nervous, because he did tell me not to be surprised if I feel some fatigue and depression in the first few weeks on the drug. I really don't want to become a blob of exhaustion and emotion - which is exactly what happened when I tried Sulfasalazine last year - but I'm just going to steel myself and hope the side effects aren't that bad. It will be nice to have a heart that isn't working like mad when all I'm doing is lying on the couch reading.

I've got lots more to say, but I felt like writing a novel about as much as you feel like reading one. Stay tuned for part deux.

Singing update

Singing lessons were a lot of fun last night, and I really feel I'm making progress. We've moved from 1/2 hour beginner lessons to 1 hour lessons which are helping me to learn a lot more, and giving me a chance to process information while my instructor is there to answer questions.

The breathing is still a problem, but he believes that if I don't focus on it right now, and instead concentrate on learning all of the other things I need to learn, I'll slowly get better at breathing properly until one day I just do it instinctively. I do think I have some pleural adhesions left over from my pleurisy. I'm involved in an annual Christmas choir, and by the end of our weekly two-hour practices, I'm usually in pain that's very similar to the pain I felt when I had pleurisy - just not as severe. My breaths become shallower and when I do breathe more deeply to sing, I feel sharp, stabbing pains across the right side of my chest and up to my right shoulder.

But, pleural adhesions can be stretched with exercise, and I feel strongly enough about singing that I know I'll keep working at it until I can do it.

It feels amazing to do something so physical. All my life, I've felt isolated from the kids who played sports or complicated instruments. After I stopped piano lessons at 11 - at the request of my rheumatologist - I often felt like the kid who didn't have a "thing".

It's wonderful to feel like this body really is good for something.

Update

Here is the latest on the Calgary Flames vaccine kerfuffle:

A staff member has been fired after an Alberta Health Services probe into why some members of the Calgary Flames and their families received their own flu-shot clinic while other Albertans waited for hours in the cold at other sites.
"Disciplinary action has been taken, resulting in the dismissal today of the most senior staff member involved," said a statement released by the health board on Wednesday. "An investigation is continuing and may result in further disciplinary action."
Top officials said they did not know about the separate clinic held on Friday for the Flames organization until Monday.
"The decision to allow preferential access to the Flames and their families was a serious error in judgment on the part of the staff involved," said Stephen Duckett, president and CEO of the board.
"The special treatment … is unacceptable to us and contrary to all of our existing protocols and processes. I apologize for this breach of our duty to Albertans."

As the Liberal leader I quoted in my previous post said, this goes against the most basic principle of Canada's healthcare system - that need should outweigh wealth. In general, I have found this to work. It isn't perfect, but I have always received a high standard of care and I have always known those with urgent care needs to receive that care promptly. The whole point of the system is that you shouldn't simply be able to buy your way ahead of those who require healthcare more urgently than you do. Unfortunately, that's just what's happened here. I'm glad it's being taken seriously.

Queue-jumping at its worst

This is ridiculous.

Players for the Calgary Flames (an NHL team in Alberta), and many of their families, skipped past high-risk individuals to receive the H1N1 shot early. Apparently, coaches, team doctors and players considered them to be priority because they're in close proximity to one another (unlike, say, pregnant women or people with asthma, autoimmune disease or cancer who still have to work in close contact with others). And shortly thereafter, Alberta suspended its vaccination program - even for high-risk individuals - because it had run out of vaccine. It has been announced that clinics will resume this Thursday.

At least this is receiving appropriate condemnation from politicians and officials:

Alberta Liberal Leader David Swann slammed the decision to give the hockey players their shots while Albertans were lining up for hours.

"I think it's again a failure of leadership that we are providing vaccines willy-nilly to whoever has money, whoever has access and when health workers are on the front lines in dealing with this issue," Swann said Tuesday. "When cancer patients, when chronic lung patients, when pregnant women and their children can't get it, this is a travesty of leadership and it's a violation of the basic principles of public health care."

The province of Alberta has begun an investigation.

Urgh.

Vaccinated!

Late last week I got my H1N1 vaccine. This was the line-up:

Everybody was, for the most part, pleasant and well-behaved, but it was bloody cold. We stood outside for about 2 hours, and then inside for another half hour, before finally getting our shots. My arm was a little sore afterwards, but really my knees, hips and ankles were more bothersome after all of the standing around. One guy brought a chair, which on reflection would have been a good idea.

There was a family one or two groups behind us. The mother chain-smoked her way through the line (which was full of little kids, pregnant women and people with lung problems). Then at one point, the Dad and one of the kids came back from a walk with a little dead snapping turtle they'd found on the road. Everybody ooh'd and aah'd over it and tried to figure out if it was alive or not.

About an hour later, I heard someone yell, "YOU DROPPED THE TURTLE!" They had put the turtle in a coffee cup, and one of the kids had been flinging it around. They hastily picked it up and shoved it back into the cup.

I decided to ignore them, which was pretty easy, because I was concentrating on freezing.

When we finally got inside the community centre, they still had the turtle in the cup. The three kids were running around with it and screaming, screaming, screaming about who got to hold it. A few other kids decided to get in on the turtle action, too. Then one of the three ran off. His parents looked for him for about twenty minutes, while their six-year-old daughter pushed the screaming baby in her stroller and tried to calm her by letting her hold the turtle-cup. They finally found the kid, racing around in the gym where they were vaccinating people, screaming his head off.

Then they all got their shots, while the turtle kept them company. I wonder if the nurse told them the vaccine won't help them out with whatever they pick up touching random animals. I think I can safely say I am one of very few people who went through the flu shot line-up with a dead turtle.