This is me, exhausted: Nauseous, light-headed, sore, deathly pale, and beyond irritable. Snapping at everybody, crying at nothing.
This week has been a bit hellish: many, many hours helping a friend with PR for his concert; my fire-alarm wakeup call on Tuesday; my first aquafit class; painting my kitchen by myself (still not done); too much time spent on volunteer commitments I probably shouldn't have made; the usual work insanity; bowling (or, watching people bowl) late into the night. All topped off with an inability to fall asleep before 2 am for the past month or so.
I spent most of the day in the car yesterday, travelling to and from a lunch meeting with a client whose excitement usually rubs off on me, but not this time. When I got back to the office, I finally crashed. I hardly even remember getting home after work.
I'm trying not to feel bad about skipping out on the Haiti relief concert (2 hours away) my friend was organizing - trying pretty unsuccessfully. I want, I need at least a bit of a weekend. Tomorrow I sing in a choir in the morning and have a 4.5 hour "Joseph" rehearsal in the afternoon.
I'm pretty sure RA is one of the reasons - perhaps the reason - I push too hard sometimes. I suppose it's my way of putting arthritis in its place, of making sure everybody knows I can do just as much or more than the next person. I keep pushing and pushing until something forces me to stop.
So I'll stop, for today. I'll skip the concert (ugh - guilt!). I'll read. I'll watch TV. I'll eat enough, and properly. Maybe I'll even have a nap.
But I'll start again on Monday.
Saturday, January 30, 2010
Thursday, January 28, 2010
Bowling. BOWLING!
Seriously, people. What is it with bowling? Physical limitations aside, is it really that much fun? You're rolling a giant, heavy ball toward some pins.
There is a big "bowling party" tonight, held by a local professional organization. I said a flat-out "no" to actually participating in this. As the entire office will still be attending, I thought I'd just hang out with our 68-year-old VP and drink some gin and tonics I don't have to pay for.
I was anticipating lots of "Helen, why aren't you bowling?" questions on the night, but then people started pulling out for various reasons and suddenly our team was short one person. So yesterday in my cubicle, in front of everybody and very loudly, I was asked: "Helen! WHY won't you bowl?"
Argh.
But, I am getting so much better at just saying "screw it" and telling the truth (thanks in very large part to this whole blogging community). I told them all (including the account manager I have a crush on) that I can't bowl because I have rheumatoid arthritis and it would wreck my hands. J didn't even blink - he just said, "ok, we'll find someone else." R went on and on about how much fun I could still have without bowling and how badly she wanted me to come. I love these guys.
And look how far I've come in one year. My "welcome to the company" last February involved a somewhat elaborately planned surprise bowling outing. I felt terrible that they'd gone to so much trouble, so I bowled, horribly, and cried in the bathroom between games. It was 10 pin! I might as well have spent the afternoon hurling bricks around.
I know I underestimate people. I forget these aren't the kids I went to school with who thought arthritis was hilarious or gross. I'm always going to feel awkward when I'm put on the spot, but I need to give people more credit than I do.
Minus one for my own preconceptions. Plus one for nice people.
(But still, minus a million for bowling.)
There is a big "bowling party" tonight, held by a local professional organization. I said a flat-out "no" to actually participating in this. As the entire office will still be attending, I thought I'd just hang out with our 68-year-old VP and drink some gin and tonics I don't have to pay for.
I was anticipating lots of "Helen, why aren't you bowling?" questions on the night, but then people started pulling out for various reasons and suddenly our team was short one person. So yesterday in my cubicle, in front of everybody and very loudly, I was asked: "Helen! WHY won't you bowl?"
Argh.
But, I am getting so much better at just saying "screw it" and telling the truth (thanks in very large part to this whole blogging community). I told them all (including the account manager I have a crush on) that I can't bowl because I have rheumatoid arthritis and it would wreck my hands. J didn't even blink - he just said, "ok, we'll find someone else." R went on and on about how much fun I could still have without bowling and how badly she wanted me to come. I love these guys.
And look how far I've come in one year. My "welcome to the company" last February involved a somewhat elaborately planned surprise bowling outing. I felt terrible that they'd gone to so much trouble, so I bowled, horribly, and cried in the bathroom between games. It was 10 pin! I might as well have spent the afternoon hurling bricks around.
I know I underestimate people. I forget these aren't the kids I went to school with who thought arthritis was hilarious or gross. I'm always going to feel awkward when I'm put on the spot, but I need to give people more credit than I do.
Minus one for my own preconceptions. Plus one for nice people.
(But still, minus a million for bowling.)
Wednesday, January 27, 2010
Aquafit
Last night I went to the Y for a trial run of a Deep Aquafit class.
It was a lot of fun. It wasn’t as intense as the one I’d gone to at the University pool a couple of years ago, the goal of which was apparently to kill us all. There were bursts of intensity, but also lots of muscle work, which is what I need. My goal with these classes is to get stronger and more flexible.
The water felt great. It was nice and warm, and it was lovely to float around weightlessly and be able to stretch my back out. We wore floatation belts around our waists to keep our heads above water so that we could do all of the exercises without also having to focus on keeping ourselves afloat.
I almost didn't tell anyone about my defibrillator, but then I realized that 12 feet of water is probably not an ideal place for a shock, especially if nobody knows what’s happening. And, of course, there was the inevitable waiver in which I had to check that yes, "I am currently being treated for high blood pressure and/or a heart condition."
When I explained the ICD to the instructor, she said, "wow. That's so cool." Which is actually a pretty common response to this thing, and which put me immediately at ease. I did feel sort of nervous through the whole thing. My chest felt tight and a little painful – not a reason to stop, just a symptom of HCM and those stupid pleural adhesions. I did not want a shock, both because I’m scared of what it would feel like and because I really, really don’t want it happening in front of twenty strangers. But I paced myself a bit and didn’t get one, and I think I’ll feel more confident at the next class.
I actually liked that it took place in the evening, even though I didn’t get home until almost 9:30. I slept really well, and it got rid of the headache that had been building after hunching over my desk all day.
I will definitely be going back, and I’m hoping that the money I spend on a membership will encourage me to try other classes as well, like a gentle yoga class.
**
As for pleasure. What I meant yesterday wasn’t necessarily that I want to know what it feels like to kick a football or run a race; it’s more that I’d like to become more aware of things that genuinely feel good, rather than basing my perceptions of what feels good on how much something doesn’t hurt. I think this might help me feel better about my body, because sometimes I find myself thinking it’s a bit useless. So, at the pool I thought about how nice the warm water felt and how pleasant it was to float there. I did think about the parts that hurt, but I also thought about the parts that didn’t. It felt refreshingly different.
It was a lot of fun. It wasn’t as intense as the one I’d gone to at the University pool a couple of years ago, the goal of which was apparently to kill us all. There were bursts of intensity, but also lots of muscle work, which is what I need. My goal with these classes is to get stronger and more flexible.
The water felt great. It was nice and warm, and it was lovely to float around weightlessly and be able to stretch my back out. We wore floatation belts around our waists to keep our heads above water so that we could do all of the exercises without also having to focus on keeping ourselves afloat.
I almost didn't tell anyone about my defibrillator, but then I realized that 12 feet of water is probably not an ideal place for a shock, especially if nobody knows what’s happening. And, of course, there was the inevitable waiver in which I had to check that yes, "I am currently being treated for high blood pressure and/or a heart condition."
When I explained the ICD to the instructor, she said, "wow. That's so cool." Which is actually a pretty common response to this thing, and which put me immediately at ease. I did feel sort of nervous through the whole thing. My chest felt tight and a little painful – not a reason to stop, just a symptom of HCM and those stupid pleural adhesions. I did not want a shock, both because I’m scared of what it would feel like and because I really, really don’t want it happening in front of twenty strangers. But I paced myself a bit and didn’t get one, and I think I’ll feel more confident at the next class.
I actually liked that it took place in the evening, even though I didn’t get home until almost 9:30. I slept really well, and it got rid of the headache that had been building after hunching over my desk all day.
I will definitely be going back, and I’m hoping that the money I spend on a membership will encourage me to try other classes as well, like a gentle yoga class.
**
As for pleasure. What I meant yesterday wasn’t necessarily that I want to know what it feels like to kick a football or run a race; it’s more that I’d like to become more aware of things that genuinely feel good, rather than basing my perceptions of what feels good on how much something doesn’t hurt. I think this might help me feel better about my body, because sometimes I find myself thinking it’s a bit useless. So, at the pool I thought about how nice the warm water felt and how pleasant it was to float there. I did think about the parts that hurt, but I also thought about the parts that didn’t. It felt refreshingly different.
Tuesday, January 26, 2010
The incredible floating brain
Illness can make us feel like strangers in our bodies.
As a child, I lived in my head. My body just wasn't the place I wanted to spend my time; it hurt, and it didn't do the things I wanted or look quite the way I thought it should. In my mind, I did incredible, even ridiculous things. I was a biologist, living with wolves. I was a world-renowned equestrian. I was a spy (I was desperate to be a spy). And every single member of New Kids on the Block was wildly in love with me.
I still do live up there, although the New Kids and I broke up some time ago (it was rough – Donnie cried). In part, I think this is just who I am; I’ve always been a daydreamer with a short attention span, often happiest with my own thoughts. I suspect this does not make me unusual. But I also think it’s the product of twenty-four years of actively ignoring my physical reality.
A few years ago I realized I have no idea what it feels like not to be in any pain. There are lots of times I’m in very minimal pain, but if I were to be fully conscious of my body at all times, there would always be something that hurt. I'm so used to it that it feels entirely normal to me, but when I stop to think I'll realize my fingers hurt, my hip throbs, scoliosis jabs away at my lower back.
So this tendency to play the floating brain is useful in many respects; a finely-honed, take-it-anywhere painkiller. But I wonder, too, what I’m missing out on. Sometimes I think I (and perhaps we) focus so intensely on the absence of pain that I forget there is still the possibility of the presence of pleasure.
I don’t mean that I’m not happy (I am), only that my happiness is almost entirely cerebral. Ideas make me happy; a friend’s quick wit makes me happy; poetry makes me happy; love and all of the big things make me happy. But seldom do I derive any real happiness from this body. Often, it is simply relief or comfort masquerading as something bigger. I think there is a difference.
I’ve written about body image issues before; about my suspicion that I look awkward and frail and everybody who sees me is thinking just that. But perhaps I should not be striving for correctness – in singing, in posture, in movement – but for pleasure. For what feels good. I thought I knew my body because I know my RA inside and out; because I am, a little reluctantly, becoming just as familiar with my defibrillator. But I had forgotten that it should be more than those things.
This, I think, must be a goal of mine – to find pleasure beyond the diminishing of pain. Is it possible to feel pain and real pleasure at the same time? I think so. It has to be so, because pain, like reality TV, is here to stay. There must be a way for the two to exist together.
If I keep writing the word “pleasure” I’m sure I’ll see all sorts of weird criteria in my Google search log, so I’ll stop now. (Sorry to disappoint any of you who came here looking for something else.)
Tonight I’m going swimming, and I’m going to see if I can feel more than relief.
As a child, I lived in my head. My body just wasn't the place I wanted to spend my time; it hurt, and it didn't do the things I wanted or look quite the way I thought it should. In my mind, I did incredible, even ridiculous things. I was a biologist, living with wolves. I was a world-renowned equestrian. I was a spy (I was desperate to be a spy). And every single member of New Kids on the Block was wildly in love with me.
I still do live up there, although the New Kids and I broke up some time ago (it was rough – Donnie cried). In part, I think this is just who I am; I’ve always been a daydreamer with a short attention span, often happiest with my own thoughts. I suspect this does not make me unusual. But I also think it’s the product of twenty-four years of actively ignoring my physical reality.
A few years ago I realized I have no idea what it feels like not to be in any pain. There are lots of times I’m in very minimal pain, but if I were to be fully conscious of my body at all times, there would always be something that hurt. I'm so used to it that it feels entirely normal to me, but when I stop to think I'll realize my fingers hurt, my hip throbs, scoliosis jabs away at my lower back.
So this tendency to play the floating brain is useful in many respects; a finely-honed, take-it-anywhere painkiller. But I wonder, too, what I’m missing out on. Sometimes I think I (and perhaps we) focus so intensely on the absence of pain that I forget there is still the possibility of the presence of pleasure.
I don’t mean that I’m not happy (I am), only that my happiness is almost entirely cerebral. Ideas make me happy; a friend’s quick wit makes me happy; poetry makes me happy; love and all of the big things make me happy. But seldom do I derive any real happiness from this body. Often, it is simply relief or comfort masquerading as something bigger. I think there is a difference.
I’ve written about body image issues before; about my suspicion that I look awkward and frail and everybody who sees me is thinking just that. But perhaps I should not be striving for correctness – in singing, in posture, in movement – but for pleasure. For what feels good. I thought I knew my body because I know my RA inside and out; because I am, a little reluctantly, becoming just as familiar with my defibrillator. But I had forgotten that it should be more than those things.
This, I think, must be a goal of mine – to find pleasure beyond the diminishing of pain. Is it possible to feel pain and real pleasure at the same time? I think so. It has to be so, because pain, like reality TV, is here to stay. There must be a way for the two to exist together.
If I keep writing the word “pleasure” I’m sure I’ll see all sorts of weird criteria in my Google search log, so I’ll stop now. (Sorry to disappoint any of you who came here looking for something else.)
Tonight I’m going swimming, and I’m going to see if I can feel more than relief.
If THIS is going to be my wake-up call...
...then maybe I can be ready for morning aquafit after all.
A fire alarm, a smoke-filled hallway, police everywhere and blood all over the lobby, which I stepped in. One of the officers told me the people in 502 had "gotten up to something." Right.
I am now officially awake.
(On a side note, the number of people in apartment buildings who just poke their heads out the door on hearing a fire alarm, look around for smoke and go back to bed shocks me. Put your coat on over your reindeer pajamas, as I did, and get the hell downstairs.)
A fire alarm, a smoke-filled hallway, police everywhere and blood all over the lobby, which I stepped in. One of the officers told me the people in 502 had "gotten up to something." Right.
I am now officially awake.
(On a side note, the number of people in apartment buildings who just poke their heads out the door on hearing a fire alarm, look around for smoke and go back to bed shocks me. Put your coat on over your reindeer pajamas, as I did, and get the hell downstairs.)
Sunday, January 24, 2010
Oh yes I did!
Inject into the front of my thigh, that is.
Now, let's be totally honest. It STUNG. Not everybody does, but I find the preservative in the pre-mixed syringes hurts like hell (I also think the enormous amount of scar tissue I built up in my usual site had made me much less sensitive there). I'm excited, though, that my absorption of the medication may improve. I wonder if I'll notice a difference.
Either way, I shall persevere with the injection site rotations, as long as nobody begrudges me the right to swear like a sailor every time I administer a dose.
Now, let's be totally honest. It STUNG. Not everybody does, but I find the preservative in the pre-mixed syringes hurts like hell (I also think the enormous amount of scar tissue I built up in my usual site had made me much less sensitive there). I'm excited, though, that my absorption of the medication may improve. I wonder if I'll notice a difference.
Either way, I shall persevere with the injection site rotations, as long as nobody begrudges me the right to swear like a sailor every time I administer a dose.
Saturday, January 23, 2010
A blog/life intersection
There's a blogger with RA and scleroderma I read sometimes and often find myself thinking, "it sounds like he's in the same city as me."
Some time ago, he posted a photo of the view from his balcony. I thought, "wait - that's the view from my balcony!" Then, at a recent meeting at the Arthritis Society, I saw one of my neighbours pictured on the wall, being honoured for his years teaching the Society's excellent Arthritis Self-Management Program. "That must be him!" I thought.
So I knew who this blogger was. He lived three doors down from me. But I was uncertain about whether I should cross that line between virtual and real, between anonymity (however tenuous) and indentification. I value my privacy intensely and am sensitive to that of others, but I value equally the many connections I've made since becoming more vocal about my illnesses.
In the elevator this morning, I introduced myself. It wasn't awkward at all, and we ended up talking for ages. We even have the same rheumatologist! I learned about his wheelchair (which he's recently had winterized), met his sweet dog, and learned the incredible story of his diagnosis. In turn, he asked all about me and we compared notes on our awesome doc.
I'm so glad I reached out. He's a cool guy, and there's something oddly comforting about having someone who "gets it" just a few steps away. I'll try to be there for him, and maybe he'll be there for me, too.
A nice way to start a Saturday.
Some time ago, he posted a photo of the view from his balcony. I thought, "wait - that's the view from my balcony!" Then, at a recent meeting at the Arthritis Society, I saw one of my neighbours pictured on the wall, being honoured for his years teaching the Society's excellent Arthritis Self-Management Program. "That must be him!" I thought.
So I knew who this blogger was. He lived three doors down from me. But I was uncertain about whether I should cross that line between virtual and real, between anonymity (however tenuous) and indentification. I value my privacy intensely and am sensitive to that of others, but I value equally the many connections I've made since becoming more vocal about my illnesses.
In the elevator this morning, I introduced myself. It wasn't awkward at all, and we ended up talking for ages. We even have the same rheumatologist! I learned about his wheelchair (which he's recently had winterized), met his sweet dog, and learned the incredible story of his diagnosis. In turn, he asked all about me and we compared notes on our awesome doc.
I'm so glad I reached out. He's a cool guy, and there's something oddly comforting about having someone who "gets it" just a few steps away. I'll try to be there for him, and maybe he'll be there for me, too.
A nice way to start a Saturday.
Thursday, January 21, 2010
Advice, please! Should I work out in the morning?
Do you?
I'd like to add a once-a-week aquafitness class to my workout. I know I need to get stronger and more flexible, especially in my left shoulder/chest where my ICD was implanted, and in my back now that I'm trying to stand properly for singing.
There's a YMCA two blocks from my apartment that offers a deep aquafit class four times a week: Tuesday and Thursday mornings at 7:15, and Tuesday and Thursday evenings at 8:15. So I have a decision to make. Sometimes I think a morning workout would be really good for me. It might help get me moving and perk me up for the day ahead. On the other hand, I'm usually in too much pain, too stiff and too short-of-breath in the morning to do much more than shuffle semi-consciously through my bare-bones routine. Sometimes my pulse is so high I have to lean against the wall for a minute between getting to the bathroom and bending down to turn on the shower. But maybe morning exercise would help that? And 8:15 - 9pm isn't the most convenient time either (it would definitely have to be the Tuesday so I wouldn't miss 30 Rock).
So, what do you think? Do any of you, my fellow RA bloggers, exercise in the morning, or are we all too stiff and sore in the early hours?
(Edit: I made a poll, but it didn't work! Comments will have to suffice.)
I'd like to add a once-a-week aquafitness class to my workout. I know I need to get stronger and more flexible, especially in my left shoulder/chest where my ICD was implanted, and in my back now that I'm trying to stand properly for singing.
There's a YMCA two blocks from my apartment that offers a deep aquafit class four times a week: Tuesday and Thursday mornings at 7:15, and Tuesday and Thursday evenings at 8:15. So I have a decision to make. Sometimes I think a morning workout would be really good for me. It might help get me moving and perk me up for the day ahead. On the other hand, I'm usually in too much pain, too stiff and too short-of-breath in the morning to do much more than shuffle semi-consciously through my bare-bones routine. Sometimes my pulse is so high I have to lean against the wall for a minute between getting to the bathroom and bending down to turn on the shower. But maybe morning exercise would help that? And 8:15 - 9pm isn't the most convenient time either (it would definitely have to be the Tuesday so I wouldn't miss 30 Rock).
So, what do you think? Do any of you, my fellow RA bloggers, exercise in the morning, or are we all too stiff and sore in the early hours?
(Edit: I made a poll, but it didn't work! Comments will have to suffice.)
Wednesday, January 20, 2010
What do you want from a doctor's office?
Not your doctor, but the place you go to see him or her.
This post over at KevinMD discusses how one doctor’s experience taking her son to see a orthopedist was affected by that doctor’s workspace and staff.
I see my rheumatologist at one hospital and my cardiologists at another. If there were a contest between the two, the cardiac unit would definitely lose. There is nothing to read (though there is a muted TV in one corner that loops soaps all day.) The waiting room seems to be the central loading station for absolutely everyone receiving cardiac care, including those just out of surgery, those going into surgery, and everybody in between. It’s crowded, loud and chaotic, and the receptionists are snippy (I know, mostly thanks to Dr. Grumpy, that these people deal with a whole lot of shit, but I make a concerted effort to be polite and well-organized and I still get snark). Things are a little better once you get beyond the front desk, but not much. Doctor Cufflinks' awesomeness generally makes up for it, thank goodness.
So what makes for a comfortable, welcoming medical practice? Here are my top five:
1. Reading material. Something. Anything. I’m much happier to wait if I’m not just staring blankly at the wall. (I do often bring a book, but sometimes I forget.)
2. Cleanliness, cleanliness, cleanliness. I saw specialists at three hospitals when I lived in Toronto, and there was one that was always sort of dingy – paint peeling, dirty fake flowers on tables, grubby chairs. I never felt as comfortable there as I did at the other two.
3. Space. I realize this isn’t possible everywhere, especially in hospitals. But I hate having to sandwich myself between people, especially at this time of year when everybody’s got twelve coats on. I’m sure I’m not the only one.
4. Polite staff. I know your job really sucks sometimes. You deal with patients who are rude, disorganized and sometimes totally divorced from reality, and I know some of you work for whackjob doctors. But if you feel like picking a fight over something ridiculous (like me showing up 6 hours early because of YOUR typo and not wanting to shell out $15 to park for a non-appointment…), I will win. And then I will be a grump. Thank you.
5. Privacy. This has only happened once or twice, but I have on occasion been the only one in the waiting room wearing a gown, holding my clothes on my lap and gripping the thin fabric closed. Not fun.
And one more:
Doctors, please wear some decent footwear. Not Birkenstocks and bare feet. Not sneakers caked with mud. This has never happened with a specialist, but it happened a couple of times at the University Health Centre when I was in school. I for one would feel much better if you'd put some socks on.
Now tell me what makes you feel comfortable at the doctor.
(I've also been thinking a lot lately about what we as patients owe our doctors. Now that I'm in list mode, I think we can expect that for tomorrow's post.)
This post over at KevinMD discusses how one doctor’s experience taking her son to see a orthopedist was affected by that doctor’s workspace and staff.
I see my rheumatologist at one hospital and my cardiologists at another. If there were a contest between the two, the cardiac unit would definitely lose. There is nothing to read (though there is a muted TV in one corner that loops soaps all day.) The waiting room seems to be the central loading station for absolutely everyone receiving cardiac care, including those just out of surgery, those going into surgery, and everybody in between. It’s crowded, loud and chaotic, and the receptionists are snippy (I know, mostly thanks to Dr. Grumpy, that these people deal with a whole lot of shit, but I make a concerted effort to be polite and well-organized and I still get snark). Things are a little better once you get beyond the front desk, but not much. Doctor Cufflinks' awesomeness generally makes up for it, thank goodness.
So what makes for a comfortable, welcoming medical practice? Here are my top five:
1. Reading material. Something. Anything. I’m much happier to wait if I’m not just staring blankly at the wall. (I do often bring a book, but sometimes I forget.)
2. Cleanliness, cleanliness, cleanliness. I saw specialists at three hospitals when I lived in Toronto, and there was one that was always sort of dingy – paint peeling, dirty fake flowers on tables, grubby chairs. I never felt as comfortable there as I did at the other two.
3. Space. I realize this isn’t possible everywhere, especially in hospitals. But I hate having to sandwich myself between people, especially at this time of year when everybody’s got twelve coats on. I’m sure I’m not the only one.
4. Polite staff. I know your job really sucks sometimes. You deal with patients who are rude, disorganized and sometimes totally divorced from reality, and I know some of you work for whackjob doctors. But if you feel like picking a fight over something ridiculous (like me showing up 6 hours early because of YOUR typo and not wanting to shell out $15 to park for a non-appointment…), I will win. And then I will be a grump. Thank you.
5. Privacy. This has only happened once or twice, but I have on occasion been the only one in the waiting room wearing a gown, holding my clothes on my lap and gripping the thin fabric closed. Not fun.
And one more:
Doctors, please wear some decent footwear. Not Birkenstocks and bare feet. Not sneakers caked with mud. This has never happened with a specialist, but it happened a couple of times at the University Health Centre when I was in school. I for one would feel much better if you'd put some socks on.
Now tell me what makes you feel comfortable at the doctor.
(I've also been thinking a lot lately about what we as patients owe our doctors. Now that I'm in list mode, I think we can expect that for tomorrow's post.)
Tuesday, January 19, 2010
"Burling down and down the white water"
This has nothing to do with chronic illness, but Kate McGarrigle, a Canadian and, I think, global music icon died last night. She's well known as the matriarch of the Wainwright family, with her sister Anna, ex-husband Loudon and children Martha and Rufus.
She was also the source of an infinite number of utterly delightful folk songs, including the following, which has become an end-of-the-nighter in pubs all over the country.
I'm off out of town for work today, but back to regularly scheduled blogging soon.
As one writer in the UK's Daily Telegraph said, "rest in music, Kate."
She was also the source of an infinite number of utterly delightful folk songs, including the following, which has become an end-of-the-nighter in pubs all over the country.
I'm off out of town for work today, but back to regularly scheduled blogging soon.
As one writer in the UK's Daily Telegraph said, "rest in music, Kate."
Monday, January 18, 2010
We need to see other people.
My massage therapist and me, that is.
Oh, she hurts me. Which is unfortunate, because she works out of the building I live in, so all I have to do for a massage is stick some slippers on and wander downstairs. No shoes, no coat, no car. It's lovely.
Until she touches me.
I've taken to telling her, every single time I go in and even if I'm feeling really good, that I'm in a major flare and experiencing severe pain, so please, please be gentle.
"Okay," she'll say. "I'll go really easy today."
Then I lay down and she basically beats me to a pulp. She digs her fingertips into places I didn't even know it was possible to feel pain; she pokes at my defibrillator (OW, and, WHY?) until once, I actually yelped (and yes, I've told her not to). It's so painful I hold my breath through most of the massage; hardly the most relaxing way to spend an hour. It would be different if I felt better afterwards, but I just feel beat up.
I've heard nothing but good things about this woman. I have friends who swear by her and won't see anyone else. And I've tried talking to her about it, but she truly does think her way is best. I get the feeling she doesn't quite believe I have RA; that she thinks all I need is toughening up.
So I'm leaving her and going back to the massage therapist I used to see when I was a student. This woman calms me down instantly, which is a feat in itself because I tend to be a little hyper. She understands arthritis, she knows where I hurt and never does anything without asking first. She also knows the whole defibrillator story, and she knows how it's healed, where it hurts and where I'm not as strong as I should be.
Basically, I'm giving up. Massage Therapist A doesn't get rheumatoid arthritis (or the fact that you shouldn't poke at people's submuscular devices) and I don't suppose she ever will.
Have you been in a similar situation? Did you keep trying to explain, or just decide not to bother?
Oh, she hurts me. Which is unfortunate, because she works out of the building I live in, so all I have to do for a massage is stick some slippers on and wander downstairs. No shoes, no coat, no car. It's lovely.
Until she touches me.
I've taken to telling her, every single time I go in and even if I'm feeling really good, that I'm in a major flare and experiencing severe pain, so please, please be gentle.
"Okay," she'll say. "I'll go really easy today."
Then I lay down and she basically beats me to a pulp. She digs her fingertips into places I didn't even know it was possible to feel pain; she pokes at my defibrillator (OW, and, WHY?) until once, I actually yelped (and yes, I've told her not to). It's so painful I hold my breath through most of the massage; hardly the most relaxing way to spend an hour. It would be different if I felt better afterwards, but I just feel beat up.
I've heard nothing but good things about this woman. I have friends who swear by her and won't see anyone else. And I've tried talking to her about it, but she truly does think her way is best. I get the feeling she doesn't quite believe I have RA; that she thinks all I need is toughening up.
So I'm leaving her and going back to the massage therapist I used to see when I was a student. This woman calms me down instantly, which is a feat in itself because I tend to be a little hyper. She understands arthritis, she knows where I hurt and never does anything without asking first. She also knows the whole defibrillator story, and she knows how it's healed, where it hurts and where I'm not as strong as I should be.
Basically, I'm giving up. Massage Therapist A doesn't get rheumatoid arthritis (or the fact that you shouldn't poke at people's submuscular devices) and I don't suppose she ever will.
Have you been in a similar situation? Did you keep trying to explain, or just decide not to bother?
Saturday, January 16, 2010
A fascinating photo gallery
With thanks to Dr. Wes for tipping me off, this amazing National Geographic Gallery has some incredible photos of the human heart and of heart patients, including one retouched x-ray of a man with a pacemaker.
This angiogram of a healthy heart and all its blood vessels is similar to the view I had of my own heart when I underwent my elecrophysiology study. It was incredible to watch my heart on the screen above my head, to see the electrode-tipped catheters waving like seaweed in its chambers. (After two hours I admit I started to lose interest, but it's still an experience I'm grateful for. It was extremely cool.)
This angiogram of a healthy heart and all its blood vessels is similar to the view I had of my own heart when I underwent my elecrophysiology study. It was incredible to watch my heart on the screen above my head, to see the electrode-tipped catheters waving like seaweed in its chambers. (After two hours I admit I started to lose interest, but it's still an experience I'm grateful for. It was extremely cool.)
Friday, January 15, 2010
Goal for the weekend
I got an instructional DVD in the mail this week along with the alcohol swabs I'd ordered from Enbrel's Enliven Services. Though I've been injecting Enbrel for seven years now, I decided to stick the DVD in the player and watch it through.
There are a few things I'm doing wrong. I re-cap my used needles before tossing them in the sharps container (or, um, on my bedside table until they pile up and start to annoy me). I also inject into the very back of my upper thigh instead of the front or any of the other recommended spots.
But the biggest thing, the thing I already knew I was doing wrong but am not all that eager to change, is that I don't rotate injection sites. Ever. I've been injecting into the same 3-inch spot in my left thigh for at least four years now. There's so much scar tissue I can hardly get the plunger down.
It's not very smart, but that spot's got a lot going for it: it doesn't bruise like my abdomen and it's easy to access with my awkward fused wrists. But.
I suppose it's time to shake things up, especially as it sounds like scar tissue can slow absorption of the medication.
Where will I go? Perhaps the right thigh? Another shot at the abdomen? What an exciting weekend I have ahead of me.
There are a few things I'm doing wrong. I re-cap my used needles before tossing them in the sharps container (or, um, on my bedside table until they pile up and start to annoy me). I also inject into the very back of my upper thigh instead of the front or any of the other recommended spots.
But the biggest thing, the thing I already knew I was doing wrong but am not all that eager to change, is that I don't rotate injection sites. Ever. I've been injecting into the same 3-inch spot in my left thigh for at least four years now. There's so much scar tissue I can hardly get the plunger down.
It's not very smart, but that spot's got a lot going for it: it doesn't bruise like my abdomen and it's easy to access with my awkward fused wrists. But.
I suppose it's time to shake things up, especially as it sounds like scar tissue can slow absorption of the medication.
Where will I go? Perhaps the right thigh? Another shot at the abdomen? What an exciting weekend I have ahead of me.
Wednesday, January 13, 2010
Babies, babies everywhere
For as long as I can remember, I’ve been uncertain whether I wanted children. I was never the kid who imagined her dolls were her own living offspring, who dressed and fed them as if they were flesh. I was much more likely to be found in the backyard cleaning rocks with my toothbrush, pretending I’d stumbled upon some undiscovered incarnation of prehistoric man. As I grew older, the prospect of parenthood became even more frightening. I wasn’t really afraid of pregnancy or birth; I was afraid of raising a child. Even at fifteen or sixteen I had this vague fear of being a terrible mother, of royally screwing up another human being.
In the rare instances in which I envisioned motherhood, I’d think, reflexively, “No way. I can't."
Then, for one deer-in-the-headlights week when I was twenty-five, I thought I was pregnant. I wasn’t; the culprit behind my early-morning nausea was not an infant but a stomach virus. But along with my terror at the prospect of being a pregnant, broke grad student, there was something I hadn’t expected: an all-encompassing, breathtaking, do-anything love for this thing I thought might be forming inside me. Since then some of my best friends have had children, and my favourite coworker is currently one of the cutest pregnant ladies ever. Slowly and unsteadily, my fear of motherhood is crumbling.
Now that I’m starting to realize I might actually want a child someday, the weight of all the decisions I’ll have to make, all the planning I’ll have to do, feels immense. Dr. Cufflinks tells me he thinks I could have a healthy pregnancy. (In fact, he reminds me just about every time I see him – I think he reads minds.) But as Laurie recently wrote over at A Chronic Dose, the decision to have a baby when you live with chronic illness is a complicated one.
With all of the drugs I’m on, and with a fifty per cent chance of passing on a potentially serious heart condition, a pregnancy will have to be carefully planned and monitored. The thought that my child could inherit my HCM – indeed, could even have a much more serious presentation of the condition than I do – ties my stomach in knots even now. Is it morally defensible for me to have a child I know could carry this particular legacy? Would a future partner even want to? Then there's the RA that already sucks a lot of the energy out of me. How will I care for a child when I'm exhausted? I know there are people who think women with chronic illness should just push this particular dream aside.
The only thing I know for certain is that there will be a lot to think about if I do decide to have a child one day. I have no answers right now, and I'm not the only one. I visit a couple of rheumatoid arthritis forums and an ICD support group, and the boards are full of questions from women wondering if they should have children. I see a lot of fear, but I also see really wonderful success stories. And of course, there are amazing moms all over the blogosphere who live, and parent, with chronic illness. These women make me hopeful.
So at least “I can’t” is no longer the unbidden partner of every passing thought of motherhood. Maybe, with lots of planning, lots of thinking, and the help of my medical team, I can.
(But still. Yikes.)
In the rare instances in which I envisioned motherhood, I’d think, reflexively, “No way. I can't."
Then, for one deer-in-the-headlights week when I was twenty-five, I thought I was pregnant. I wasn’t; the culprit behind my early-morning nausea was not an infant but a stomach virus. But along with my terror at the prospect of being a pregnant, broke grad student, there was something I hadn’t expected: an all-encompassing, breathtaking, do-anything love for this thing I thought might be forming inside me. Since then some of my best friends have had children, and my favourite coworker is currently one of the cutest pregnant ladies ever. Slowly and unsteadily, my fear of motherhood is crumbling.
Now that I’m starting to realize I might actually want a child someday, the weight of all the decisions I’ll have to make, all the planning I’ll have to do, feels immense. Dr. Cufflinks tells me he thinks I could have a healthy pregnancy. (In fact, he reminds me just about every time I see him – I think he reads minds.) But as Laurie recently wrote over at A Chronic Dose, the decision to have a baby when you live with chronic illness is a complicated one.
With all of the drugs I’m on, and with a fifty per cent chance of passing on a potentially serious heart condition, a pregnancy will have to be carefully planned and monitored. The thought that my child could inherit my HCM – indeed, could even have a much more serious presentation of the condition than I do – ties my stomach in knots even now. Is it morally defensible for me to have a child I know could carry this particular legacy? Would a future partner even want to? Then there's the RA that already sucks a lot of the energy out of me. How will I care for a child when I'm exhausted? I know there are people who think women with chronic illness should just push this particular dream aside.
The only thing I know for certain is that there will be a lot to think about if I do decide to have a child one day. I have no answers right now, and I'm not the only one. I visit a couple of rheumatoid arthritis forums and an ICD support group, and the boards are full of questions from women wondering if they should have children. I see a lot of fear, but I also see really wonderful success stories. And of course, there are amazing moms all over the blogosphere who live, and parent, with chronic illness. These women make me hopeful.
So at least “I can’t” is no longer the unbidden partner of every passing thought of motherhood. Maybe, with lots of planning, lots of thinking, and the help of my medical team, I can.
(But still. Yikes.)
Monday, January 11, 2010
"A psychological resistance to the war metaphor."
I often read Andrew Sullivan’s blog. It’s usually political, sometimes philosophical, and occasionally personal. Sullivan lives with HIV, and I often find the posts in which he discusses his life with the virus really inspiring. Yesterday, he wrote about how learning more about the science of HIV helped him come to grips with it:
I love this idea of illness as part of our bodies we must tend, rather than as an invader we fight. So Enbrel isn’t a weapon; it’s a tool, like my hairbrush and my toothbrush and my elliptical. When I read this, I realized I long ago stopped seeing my arthritis as foreign. I suppose it helps that I don't remember a time when I didn't have it. But when my elbow is puffy and sore or my wrist hurts so much I can't close my fingers around the handle of my teacup, I don't just think, "poor me," or "poor wrist." I think, strange as it sounds, "poor arthritis. I should take care of it."
I don't really perceive it as attacking me. I see it living with me and in me. Sometimes it needs a hot bath or a nap, sometimes an extra NSAID to get it through the afternoon. It likes Enbrel and really hates getting out of bed in the morning. Sometimes it demands a lot of me; at other times, we exist together in an uneasy peace. It's become, over the years, as much a part of me as my sense of humour, my (towering) inner nerd, my total inability to endure noisy eating.
It's just there, in my cells, and as Sullivan says, I own them.
Once I realized that there was no getting rid of it ever, that it had already buried itself into my genes, I simply owned it, grew to believe I was not at war with it, because that would mean being at war with a part of myself, and saw it as simply a part of my body that needed to be managed, like nails, or skin, or muscle. The way to manage my virus was to keep it close to non-existent through anti-retrovirals and then to embrace what was left of it.
I learned to love my virus.
And as I did, I became less afraid of it. And I believe that lack of fear and sometimes over-dedication to my work helped me survive it, or, rather, survive with it. I think this is wiser than some modern conceptions of our bodies as somehow alien to illness rather than as part of the web of virology and bacteria and life that exists on this planet. So you tend to your illness as part of your body rather than seeing it as an invader to be conquered. I don't mean some new agey idea that modern medicine is irrelevant. Au contraire. HIV kills you if left untreated and aggressive medicine is vital. I mean a psychological resistance to the war metaphor, an ownership of your own cells, and the spiritual calm that accepts our physical embeddedness and is often the reward of a close call with mortality. The calm fades so easily so often. But without it, we die.
I love this idea of illness as part of our bodies we must tend, rather than as an invader we fight. So Enbrel isn’t a weapon; it’s a tool, like my hairbrush and my toothbrush and my elliptical. When I read this, I realized I long ago stopped seeing my arthritis as foreign. I suppose it helps that I don't remember a time when I didn't have it. But when my elbow is puffy and sore or my wrist hurts so much I can't close my fingers around the handle of my teacup, I don't just think, "poor me," or "poor wrist." I think, strange as it sounds, "poor arthritis. I should take care of it."
I don't really perceive it as attacking me. I see it living with me and in me. Sometimes it needs a hot bath or a nap, sometimes an extra NSAID to get it through the afternoon. It likes Enbrel and really hates getting out of bed in the morning. Sometimes it demands a lot of me; at other times, we exist together in an uneasy peace. It's become, over the years, as much a part of me as my sense of humour, my (towering) inner nerd, my total inability to endure noisy eating.
It's just there, in my cells, and as Sullivan says, I own them.
Saturday, January 9, 2010
As the “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) works toward becoming an official non-profit, I’m joining many other arthritis bloggers today to write about a time when an organization like this could have made a difference for me.
**
My experiences in school were largely good; I was a good student, made good friends and was fortunate in the number of truly great teachers I had. But, particularly in primary school, a better understanding of rheumatoid arthritis on the part of teachers and school administration would have helped me greatly. As it was, despite my parents' explanations and encouragements to learn more, most of my teachers still thought arthritis a disease of the elderly. (My third-grade teacher once asked me why I was behaving like such an old lady.) I think many of them couldn't quite believe I had this disease they associated with their parents and grandparents. They couldn't understand why seemingly minor bumps made me cry, why I struggled to grip my pencil or zip my snowsuit.
Most educational institutions function on the unconscious and unstated belief that the young are healthy as horses. I can't really blame them for this. The majority of children are healthy, and encouraging physical activity is important. But this attitude can make it difficult for children with arthritis, or other illnesses causing physical limitations, to feel comfortable in school. Kids with arthritis need to be included; they need to feel comfortable saying "no" to things they can't do; they need to participate, and when they can't, reasonable modifications should be made.
We can't expect schools to educate themselves on every possible childhood illness, but I do think it's important to make them environments in which illness can be openly discussed, and in which teachers and staff are encouraged to understand the limitations faced by the children they teach.
When institutions and individuals make the effort to understand autoimmune conditions, it's important they have a resource to turn to. Below, you can learn more about the mission and vision of "Buckle Me Up," and by clicking the link at the bottom of the post, you can donate $1 toward its start-up costs.
What if autoimmune arthritis conditions were universally understood, so you never again would hear, “you’re too young to have that” or “why don’t you take some aspirin to make the pain go away” or “but you don’t look sick”? Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing debilitating fatigue that is not necessarily remedied by rest or a good night sleep? What if there were in-depth, age-appropriate exercise programs in place that catered to different levels of disability and fitness preferences? How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients? What if there were a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability? Hopefully beginning in 2010 these wishes will start to become a reality.
The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*. Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.
They are not in competition with any existing charity. Part of the mission is to partner with current organizations to assist with existing autoimmune arthritis awareness efforts. Recently they have joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. Founder Tiffany Westrich is personally working with the Arthritis Foundation's “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an important role. In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”. Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009). They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.
If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. Just like you may see while checking out at grocery stores and other retail establishments, the IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.
To view a complete list of start up costs and to send your $1 donation, please visit www.BuckleMeUpMovement.com/donate.
Let’s all work together to bring awareness to our misunderstood conditions!
*Currently, we have found the following conditions officially classified as Autoimmune Arthritis.
o Rheumatoid Arthritis
o Juvenile Arthritis
o Psoriatic Arthritis
o Reactive Arthritis
o Ankylosing Spondylitis
o Scleroderma
o Systemic Lupus Erythematosis
**
My experiences in school were largely good; I was a good student, made good friends and was fortunate in the number of truly great teachers I had. But, particularly in primary school, a better understanding of rheumatoid arthritis on the part of teachers and school administration would have helped me greatly. As it was, despite my parents' explanations and encouragements to learn more, most of my teachers still thought arthritis a disease of the elderly. (My third-grade teacher once asked me why I was behaving like such an old lady.) I think many of them couldn't quite believe I had this disease they associated with their parents and grandparents. They couldn't understand why seemingly minor bumps made me cry, why I struggled to grip my pencil or zip my snowsuit.
Most educational institutions function on the unconscious and unstated belief that the young are healthy as horses. I can't really blame them for this. The majority of children are healthy, and encouraging physical activity is important. But this attitude can make it difficult for children with arthritis, or other illnesses causing physical limitations, to feel comfortable in school. Kids with arthritis need to be included; they need to feel comfortable saying "no" to things they can't do; they need to participate, and when they can't, reasonable modifications should be made.
We can't expect schools to educate themselves on every possible childhood illness, but I do think it's important to make them environments in which illness can be openly discussed, and in which teachers and staff are encouraged to understand the limitations faced by the children they teach.
When institutions and individuals make the effort to understand autoimmune conditions, it's important they have a resource to turn to. Below, you can learn more about the mission and vision of "Buckle Me Up," and by clicking the link at the bottom of the post, you can donate $1 toward its start-up costs.
What if autoimmune arthritis conditions were universally understood, so you never again would hear, “you’re too young to have that” or “why don’t you take some aspirin to make the pain go away” or “but you don’t look sick”? Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing debilitating fatigue that is not necessarily remedied by rest or a good night sleep? What if there were in-depth, age-appropriate exercise programs in place that catered to different levels of disability and fitness preferences? How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients? What if there were a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability? Hopefully beginning in 2010 these wishes will start to become a reality.
The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*. Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.
They are not in competition with any existing charity. Part of the mission is to partner with current organizations to assist with existing autoimmune arthritis awareness efforts. Recently they have joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. Founder Tiffany Westrich is personally working with the Arthritis Foundation's “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an important role. In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”. Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009). They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.
If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. Just like you may see while checking out at grocery stores and other retail establishments, the IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.
To view a complete list of start up costs and to send your $1 donation, please visit www.BuckleMeUpMovement.com/donate.
Let’s all work together to bring awareness to our misunderstood conditions!
*Currently, we have found the following conditions officially classified as Autoimmune Arthritis.
o Rheumatoid Arthritis
o Juvenile Arthritis
o Psoriatic Arthritis
o Reactive Arthritis
o Ankylosing Spondylitis
o Scleroderma
o Systemic Lupus Erythematosis
Friday, January 8, 2010
A jumble
Some good news, and some pictures.
I got into my first-choice law school! This means lots of things:
I don't have to move.
The campus, where I did my undergrad, is one of my favourite places in the world, and I get to go back for three years. My fifth-floor library nook awaits.
I don't have to find new doctors.
I'll stay close to friends and family.
So, I am pleased, and more relaxed than I have been.
And now, winter:
I got into my first-choice law school! This means lots of things:
I don't have to move.
The campus, where I did my undergrad, is one of my favourite places in the world, and I get to go back for three years. My fifth-floor library nook awaits.
I don't have to find new doctors.
I'll stay close to friends and family.
So, I am pleased, and more relaxed than I have been.
And now, winter:
A snowy view from my balcony (one of the reasons I don't want to move).
A snowy walk near my family's house.
A giant fluffball, and me.
**
Thanks, also, for the responses to yesterday's post. Another reason I love the medblogging community.
Thursday, January 7, 2010
Singing Update: Body Image Stuff
There are lots of good things about developing arthritis at an early age. Kids are incredibly adaptive, quick to find ways around their limitations, quick, even, to accept pain as a normal part of life. My instincts, reflexes, even my personality (that’s another post) evolved with my illness. And I never had to come to terms with that shift from "healthy person" to "sick person" which I imagine must be so incredibly difficult for people who develop chronic conditions later in life.
However.
24 years with rheumatoid arthritis is a nice long time for all of the insecurities and hang-ups to settle in for the long haul.
I have a horror of performing any kind of physical task in front of other people. It can be something as small and insignificant as opening a window or a jar, or even removing the cap from my own beer - one reason I almost never drink it. My terror increases if the activity is even remotely sporty. (Cue me having a mini freak-out at a church lawn-bowling day, trying not to cry as my worried Dad stuck me in the car and drove me home. Really happened. Like last year.)
In my singing lessons, we are working on the way my body moves when I sing. We're starting out with exaggerated movements so that I can get used to singing and moving at the same time, and it will eventually become something I do unconsciously. This means rocking back on my heel when I inhale and moving forward on the other foot when I begin to sing. Last night we also worked on bending at the knee on crescendos.
P may as well be asking me to perform pirouettes; I feel quite terrified by the whole thing, and he can tell. We've had a long talk about my RA, and he knows, as well, that sports are utterly foreign to me. But it's more than that. There is a deep-seated belief that my body is "wrong", that everything I do with it is wrong, that my movements are ugly and awkward.
P says “everyone has shit.” He says we have all built our concrete walls. I built one when I had pleurisy, and now I'm afraid that breathing deeply will hurt. I've been building this other, much bigger wall my whole life. I began it in grade school when classmates laughed at my feeble attempts at schoolyard athleticism. I added to it in high school when people began to notice that I “stood weird,” that my “knees looked like balloons.”
Right now, I can’t see myself getting to a point where I no longer view my body this way. I believe it too strongly. It’s been there too long. But maybe I can get to a place where I don’t care. For now, that’s got to be the goal.
I had no idea singing was going to force me to be so unguarded.
**
After four months of technique work, I am also set to begin singing repertoire. I’ve selected Schubert and now have to pick which lied I would like to sing. Though it’s written for a baritone, I would love to do a soprano interpretation of this:
Gorgeous.
However.
24 years with rheumatoid arthritis is a nice long time for all of the insecurities and hang-ups to settle in for the long haul.
I have a horror of performing any kind of physical task in front of other people. It can be something as small and insignificant as opening a window or a jar, or even removing the cap from my own beer - one reason I almost never drink it. My terror increases if the activity is even remotely sporty. (Cue me having a mini freak-out at a church lawn-bowling day, trying not to cry as my worried Dad stuck me in the car and drove me home. Really happened. Like last year.)
In my singing lessons, we are working on the way my body moves when I sing. We're starting out with exaggerated movements so that I can get used to singing and moving at the same time, and it will eventually become something I do unconsciously. This means rocking back on my heel when I inhale and moving forward on the other foot when I begin to sing. Last night we also worked on bending at the knee on crescendos.
P may as well be asking me to perform pirouettes; I feel quite terrified by the whole thing, and he can tell. We've had a long talk about my RA, and he knows, as well, that sports are utterly foreign to me. But it's more than that. There is a deep-seated belief that my body is "wrong", that everything I do with it is wrong, that my movements are ugly and awkward.
P says “everyone has shit.” He says we have all built our concrete walls. I built one when I had pleurisy, and now I'm afraid that breathing deeply will hurt. I've been building this other, much bigger wall my whole life. I began it in grade school when classmates laughed at my feeble attempts at schoolyard athleticism. I added to it in high school when people began to notice that I “stood weird,” that my “knees looked like balloons.”
Right now, I can’t see myself getting to a point where I no longer view my body this way. I believe it too strongly. It’s been there too long. But maybe I can get to a place where I don’t care. For now, that’s got to be the goal.
I had no idea singing was going to force me to be so unguarded.
**
After four months of technique work, I am also set to begin singing repertoire. I’ve selected Schubert and now have to pick which lied I would like to sing. Though it’s written for a baritone, I would love to do a soprano interpretation of this:
Gorgeous.
Tuesday, January 5, 2010
I am a dork
I spent some quality time with my elliptical last night. It's got a pretty accurate heart rate monitor that lets me keep half an eye on things as I work out. Once or twice I've gotten off when my heart rate has increased significantly in a short period of time, but mostly I'm just interested in knowing what my heart does when I exercise.
Last night I put on one of my favourite DVDs while I exercised and was soon pretty absorbed in it. After a couple of minutes I glanced down at the heart rate monitor.
It said 217. I said "OH MY G... Oh."
I'd been working out for two minutes and seventeen seconds. My heart rate was 142.
Last night I put on one of my favourite DVDs while I exercised and was soon pretty absorbed in it. After a couple of minutes I glanced down at the heart rate monitor.
It said 217. I said "OH MY G... Oh."
I'd been working out for two minutes and seventeen seconds. My heart rate was 142.
Monday, January 4, 2010
Hibernation
January marks the beginning of a long period of hibernation in my region. Over the next two and a half months (or so), we’ll see the sun rarely. Most days the world will exist in monochrome. Roads, lanes, parks, sidewalks will become indistinguishable in a mush of brownish grey. The pewter sky will lay heavily on us. Cars, boots and pant legs will be coated with a grime of salt.
I will feel sluggish and uninspired. It will take so long to get dressed to go outside that sometimes I just won’t bother. Emerging from my warm bed in the morning will be even less attractive a prospect than usual.
On my way in to work this morning I passed more than fifteen cars in the ditch. None were damaged; they’d just slid off the road in last night’s heavy snow and now sat buried in white, yellow police ribbons flying from their antennae, beckoning the busy tow-trucks. I feel a little like those cars: cold and stuck.
The winter blahs are particularly dangerous to people with chronic illness. It's already hard enough to peel myself from the couch when I'm feeling exhausted and sore. In this damp, this cold and this wind, my body's protests grow even louder.
So let's be constructive. What do you do when you’re feeling like a bump on a log? Here are a few of the tricks up my sleeve:
1. Food. Lots of healthy, fruit- and veg-rich stuff that you know is good for you and that tastes like spring.
2. Forcing myself outside for long walks, even when the sun is nowhere to be found.
3. Music. I’m in a production of Joseph and the Amazing Technicolor Dreamcoat in March, and rehearsals have begun. It’s physically impossible to feel sluggish singing “Go Go Go Joseph.”
4. Books on subjects about which I know nothing but am keen to learn.
What gets you up off the couch on days like this?
I will feel sluggish and uninspired. It will take so long to get dressed to go outside that sometimes I just won’t bother. Emerging from my warm bed in the morning will be even less attractive a prospect than usual.
On my way in to work this morning I passed more than fifteen cars in the ditch. None were damaged; they’d just slid off the road in last night’s heavy snow and now sat buried in white, yellow police ribbons flying from their antennae, beckoning the busy tow-trucks. I feel a little like those cars: cold and stuck.
The winter blahs are particularly dangerous to people with chronic illness. It's already hard enough to peel myself from the couch when I'm feeling exhausted and sore. In this damp, this cold and this wind, my body's protests grow even louder.
So let's be constructive. What do you do when you’re feeling like a bump on a log? Here are a few of the tricks up my sleeve:
1. Food. Lots of healthy, fruit- and veg-rich stuff that you know is good for you and that tastes like spring.
2. Forcing myself outside for long walks, even when the sun is nowhere to be found.
3. Music. I’m in a production of Joseph and the Amazing Technicolor Dreamcoat in March, and rehearsals have begun. It’s physically impossible to feel sluggish singing “Go Go Go Joseph.”
4. Books on subjects about which I know nothing but am keen to learn.
What gets you up off the couch on days like this?
Saturday, January 2, 2010
Happy New Year!
I hope all of your 2010s were welcomed happily and are already bringing good things.
I'm not much for serious resolutions, because I don't think I'll keep them. I try to live healthily and when I notice myself slipping, I make an effort to pay extra attention to my diet, sleep and exercise. In the past, I've often resolved to stop biting my nails, but as I am actively breaking that resolution as I write this, I've totally given up on it and shall never make it again.
That said, there are things I'd like to do this year. I want to keep working hard at my singing. I want to learn more about medieval music, opera, and the music of the Romantic period. I want to do the core exercises my orthopedic surgeon told me to start waaaay back in September. I want to have free time to myself to do all of these things.
You'll notice there is nothing in there about either RA or my heart. I wonder if I've deliberately left them out; they are, after all, almost entirely outside the realm of my control. Resolving even to be more disciplined with my wrist physio fills me with a weird kind of dread. But I can pick up a book or my iPod, get myself to my singing lessons and even lay on the floor and do a few (horrible, awful, boring, terrible, horrible, boring) crunches even if I'm feeling rotten. It's nice to have something to push myself towards.
Here's to a New Year full of all the good things that illness can't touch.
I'm not much for serious resolutions, because I don't think I'll keep them. I try to live healthily and when I notice myself slipping, I make an effort to pay extra attention to my diet, sleep and exercise. In the past, I've often resolved to stop biting my nails, but as I am actively breaking that resolution as I write this, I've totally given up on it and shall never make it again.
That said, there are things I'd like to do this year. I want to keep working hard at my singing. I want to learn more about medieval music, opera, and the music of the Romantic period. I want to do the core exercises my orthopedic surgeon told me to start waaaay back in September. I want to have free time to myself to do all of these things.
You'll notice there is nothing in there about either RA or my heart. I wonder if I've deliberately left them out; they are, after all, almost entirely outside the realm of my control. Resolving even to be more disciplined with my wrist physio fills me with a weird kind of dread. But I can pick up a book or my iPod, get myself to my singing lessons and even lay on the floor and do a few (horrible, awful, boring, terrible, horrible, boring) crunches even if I'm feeling rotten. It's nice to have something to push myself towards.
Here's to a New Year full of all the good things that illness can't touch.
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