I work a block from my city's indoor farmer's market, which makes it easy for me to keep the kitchen well stocked with fresh stuff. There's a popular organic butcher with a wonderful selection of meats, but much of said selection is, unfortunately, restricted to those elements of the population who are capable of spending $13 on a chicken breast (i.e. not me).
I bought a cheap-o beef shank ($4!) there this week, though, in the hope that a day in the slow-cooker might soften it up. I was not disappointed - by the time I was ready to eat it, it fell apart at the touch of a fork. Here's what I did to it:
Beef shanks (I used one to make two servings), cut into pieces
Whatever veggies you have on hand (I used parsnips, red pepper, tomato, carrot, celery and potato)
1 onion, chopped
Minced garlic
A bit of olive oil
Red wine
Beef stock
Rosemary
Thyme
Flour or cornstarch to thicken
I piled the solid ingredients into the cooker, mixed in the herbs and a little olive oil, and covered with liquid - whatever ratio you like of wine to stock. When you're almost ready to eat, spoon some of the liquid into a sealable container, mix in a bit of flour or cornstarch, shake and pour back into the stew to thicken.
I started it out on low, but I think what made the difference was the fact that I came home in the middle of the day after an out-of-town meeting and turned it to high. If I'd left it on high all day the vegetables would probably have turned to mush, but those few hours on high made the beef extra tender.
(To make things even easier, and since I hate hate hate getting up in the morning, I usually chop all of the vegetables the night before and leave them covered in the fridge.)
It was yummy with roasted Brussels sprouts on the side.
Wednesday, March 31, 2010
Monday, March 29, 2010
Rambling: methotrexate, fertility, drugs, life
There is a woman I work with at the Arthritis Society who has a young girl with JRA. She is very sweet, but occasionally given to hyperbole.
She often (really - all the time!) talks about how difficult it was to put her daughter on methotrexate knowing that it "will probably make her infertile." The first time she said this, I nodded calmly, but in my head, I went, "WHAT?! I'm infertile? Nobody told me!"
Well, no. I am probably not infertile, and neither are you, even if you've been on MTX for years. It is important to be off the drug before conceiving, as MTX can cause serious birth defects or abortion (yes, that still scares the shit out of me). Pregnancies should be carefully planned, and your rheumatologist should be along for the ride. But according to my own doc and the sources I'm citing below, while a woman's ability to conceive may be disrupted in the short-term, risks to long-term fertility are minimal.
This study notes:
Okay, so it still sucks. But not as much as it could.
Regarding medication, my philosophy is this: I am going to take whatever I need to in order to live a life that is otherwise healthy. My meds may occasionally leave me feeling unpleasant, and I may not be certain of all of their long-term effects - but I am certain of the long-term effects of the things they enable me to do: exercise, eat well, and enjoy my life.
Being "otherwise healthy" is important to me. Doctor Cufflinks once asked me to remove HCM, RA and scoliosis from the picture and think about how I felt about my health. And I had to answer, pretty good.
Meds allow me to feel like garbage and believe that maybe on Tuesday or Friday or Saturday I won't. Meds allow me to get out and do things, to be with people, to be ambitious, active, busy - all the things I probably would be without illness.
I think that's the most important thing I can do for myself.
She often (really - all the time!) talks about how difficult it was to put her daughter on methotrexate knowing that it "will probably make her infertile." The first time she said this, I nodded calmly, but in my head, I went, "WHAT?! I'm infertile? Nobody told me!"
Well, no. I am probably not infertile, and neither are you, even if you've been on MTX for years. It is important to be off the drug before conceiving, as MTX can cause serious birth defects or abortion (yes, that still scares the shit out of me). Pregnancies should be carefully planned, and your rheumatologist should be along for the ride. But according to my own doc and the sources I'm citing below, while a woman's ability to conceive may be disrupted in the short-term, risks to long-term fertility are minimal.
This study notes:
The risk of infertility appears low even after high-dose MTX. One review reports a 97%conception rate in women 1 year or more after cessation of MTX treatment.This one finds that effects on fertility are time-limited and generally resolve after a relatively brief period.
[...]
On the basis of the limited data available, fertility after low-dose MTX would seem to be only marginally affected.
Okay, so it still sucks. But not as much as it could.
Regarding medication, my philosophy is this: I am going to take whatever I need to in order to live a life that is otherwise healthy. My meds may occasionally leave me feeling unpleasant, and I may not be certain of all of their long-term effects - but I am certain of the long-term effects of the things they enable me to do: exercise, eat well, and enjoy my life.
Being "otherwise healthy" is important to me. Doctor Cufflinks once asked me to remove HCM, RA and scoliosis from the picture and think about how I felt about my health. And I had to answer, pretty good.
Meds allow me to feel like garbage and believe that maybe on Tuesday or Friday or Saturday I won't. Meds allow me to get out and do things, to be with people, to be ambitious, active, busy - all the things I probably would be without illness.
I think that's the most important thing I can do for myself.
Tuesday, March 23, 2010
Letting go of the reigns
I brought a notebook to my rheumatologist’s office this morning.
Before seeing her, I filled out the usual forms, answering questions ranging from how much help I need dressing to how much sleep I’m getting. I was, as always, examined by a resident and an observing med student. Then I was left on my own for a few minutes while my doctor finished up another appointment.
I sat there wondering if I’d be able to communicate everything I needed to. Despite all of my preparation, I still wasn’t entirely clear on my priorities for the appointment. Control-freak that I am, I’m used to going into appointments with a pretty good idea of what the outcome will be. I’ll have researched my diagnosis and paid close attention during tests and exams, so that when I do meet with my doctors, I know what I’m talking about. This morning, though, I still felt confused. I’m in more pain. I’m stiff. I’m slow. But I don’t have a lot of inflammation, and my bloodwork has, by and large, been quite good.
Suddenly (it really was sudden) I thought, “why not just say that to her? Why not just tell her I don't understand what’s happening?” Strange as it may sound, this was a totally new concept for me, but it calmed me down immediately. She’s the expert, after all. Why not let her do her job instead of trying to be in charge all the time?
What I learned this morning is that sometimes being a good patient means stepping back a little, understanding that I can’t always control the process. I’ll always be your typical Type-A with new doctors, but my rheumatologist and I have built a great relationship. What is that trust for if I can’t let her take the reigns when I’m not able to?
I left with a diagnosis of sciatica (lovely) and plans to switch to injectable Methotrexate, increase my dose by 10mg, and increase Naproxen from 300 mg/day to 1000mg/day. We’re giving Enbrel two more months.
What was even better was that I left feeling much better about my own role in my care. I really need somebody else to be in charge for a while. I’m glad it’s her.
Before seeing her, I filled out the usual forms, answering questions ranging from how much help I need dressing to how much sleep I’m getting. I was, as always, examined by a resident and an observing med student. Then I was left on my own for a few minutes while my doctor finished up another appointment.
I sat there wondering if I’d be able to communicate everything I needed to. Despite all of my preparation, I still wasn’t entirely clear on my priorities for the appointment. Control-freak that I am, I’m used to going into appointments with a pretty good idea of what the outcome will be. I’ll have researched my diagnosis and paid close attention during tests and exams, so that when I do meet with my doctors, I know what I’m talking about. This morning, though, I still felt confused. I’m in more pain. I’m stiff. I’m slow. But I don’t have a lot of inflammation, and my bloodwork has, by and large, been quite good.
Suddenly (it really was sudden) I thought, “why not just say that to her? Why not just tell her I don't understand what’s happening?” Strange as it may sound, this was a totally new concept for me, but it calmed me down immediately. She’s the expert, after all. Why not let her do her job instead of trying to be in charge all the time?
What I learned this morning is that sometimes being a good patient means stepping back a little, understanding that I can’t always control the process. I’ll always be your typical Type-A with new doctors, but my rheumatologist and I have built a great relationship. What is that trust for if I can’t let her take the reigns when I’m not able to?
I left with a diagnosis of sciatica (lovely) and plans to switch to injectable Methotrexate, increase my dose by 10mg, and increase Naproxen from 300 mg/day to 1000mg/day. We’re giving Enbrel two more months.
What was even better was that I left feeling much better about my own role in my care. I really need somebody else to be in charge for a while. I’m glad it’s her.
Sunday, March 21, 2010
Inspired and excited
It's been a long and busy weekend. I've had fun with my girlfriends, enjoyed some sun on the first day of Spring, played with some pups, even gone for a couple of long walks. At the mall on Friday, at the urging of a friend, I crossed the line into skinny-jean territory with, I think, a certain degree of success.
I've also taken major naps and more painkillers than I'd have liked to, been a bit snippy, and snuck off by myself for a couple of good quick and dirty cries.
But yesterday. Yesterday was great.
It was the "Official Welcome Day" at my law school, and to be honest, I didn't particularly want to go. For one thing, I was - and to some extent continue to be - a little nervous about attending school with a bunch of twenty-one-year-olds. I was also tired. I didn't feel much like standing for three hours or fighting my way through crowds of said twenty-one-year-olds to introduce myself to my future professors.
Oh, I'm glad I went. It was a wonderful reminder of how much I love and miss academia. It was an affirmation that I've made the right choice: that the law is a combination of those disparate things I love and am good at, none of which had seemed to converge into any sort of career until now. (And, it was a chance to use my finely-honed chair-stealing abilities to avoid standing for three hours.)
It was also a much-needed reminder that there's excitement, inspiration and fun beyond this currently messed-up body. There's so much to learn; so much to think about. There are people to help through Community Legal Services. There are nooks to be found in the law library and returned to in the main university library (my fifth floor window seat awaits!). There's a new community of people to meet - even if many of them are twenty-one and already planning epic Thursday-to-Sunday drinking sessions (I am practicing my eye-rolling in advance).
It's good to feel excited.
I've also taken major naps and more painkillers than I'd have liked to, been a bit snippy, and snuck off by myself for a couple of good quick and dirty cries.
But yesterday. Yesterday was great.
It was the "Official Welcome Day" at my law school, and to be honest, I didn't particularly want to go. For one thing, I was - and to some extent continue to be - a little nervous about attending school with a bunch of twenty-one-year-olds. I was also tired. I didn't feel much like standing for three hours or fighting my way through crowds of said twenty-one-year-olds to introduce myself to my future professors.
Oh, I'm glad I went. It was a wonderful reminder of how much I love and miss academia. It was an affirmation that I've made the right choice: that the law is a combination of those disparate things I love and am good at, none of which had seemed to converge into any sort of career until now. (And, it was a chance to use my finely-honed chair-stealing abilities to avoid standing for three hours.)
It was also a much-needed reminder that there's excitement, inspiration and fun beyond this currently messed-up body. There's so much to learn; so much to think about. There are people to help through Community Legal Services. There are nooks to be found in the law library and returned to in the main university library (my fifth floor window seat awaits!). There's a new community of people to meet - even if many of them are twenty-one and already planning epic Thursday-to-Sunday drinking sessions (I am practicing my eye-rolling in advance).
It's good to feel excited.
Thursday, March 18, 2010
Relief
Last night I attended an Arthritis Society meeting to discuss the upcoming May 30 National Arthritis Walk (Laurie is walking in Toronto!).
I love my work with the AS. They're a fantastic organization, and this branch, as I imagine is the case with most other branches, is staffed by some really great people. We have fun together and we work hard to raise money and awareness across the city.
For all the good the AS does, one of the things I love most is the fact that when you're in a room full of people who also have arthritis or who work in rheumatology, you can be completely open about how you're feeling and what you can and cannot do. Nobody will wonder why you give a presentation sitting down, why you need someone to help you open a window, or why you have to pull out of something at the last minute.
There were no questions, no irritated glances after I decided not to spend last Thursday climbing around a hockey stadium selling 50/50 tickets. I was met instead with hugs, a few wry jokes, and, best of all, understanding. What a relief it is not to have to explain myself or hide my limitations.
*
I've got tomorrow off for an extended weekend with two of my best friends. It will be full of food, sun, and late nights chattering about anything and everything. Can't wait.
I love my work with the AS. They're a fantastic organization, and this branch, as I imagine is the case with most other branches, is staffed by some really great people. We have fun together and we work hard to raise money and awareness across the city.
For all the good the AS does, one of the things I love most is the fact that when you're in a room full of people who also have arthritis or who work in rheumatology, you can be completely open about how you're feeling and what you can and cannot do. Nobody will wonder why you give a presentation sitting down, why you need someone to help you open a window, or why you have to pull out of something at the last minute.
There were no questions, no irritated glances after I decided not to spend last Thursday climbing around a hockey stadium selling 50/50 tickets. I was met instead with hugs, a few wry jokes, and, best of all, understanding. What a relief it is not to have to explain myself or hide my limitations.
*
I've got tomorrow off for an extended weekend with two of my best friends. It will be full of food, sun, and late nights chattering about anything and everything. Can't wait.
Tuesday, March 16, 2010
Assigning blame
Would you like to know what bugs the hell out of me?
I will tell you.
I’m happy to talk about RA. It’s nice to be able to be open about my arthritis occasionally, and I’d very much prefer a few curious questions to awkward silence. What drives me crazy is when people who don’t know anything about this disease start trying to figure it all out for me.
Last night I visited a friend who'd recently spent a night in hospital. We chatted about her stay, her doctors, how well she's doing. It was, overall, a very pleasant visit. At one point, though, she asked how I’ve been feeling, and I mentioned my current flare-up. This led to lots of questions about RA: what does it feel like, when did I get it, how long will I have it.
Then she said:
“Don’t you think you probably got it because you had milk as a baby?”
Sorry, what?! No. I think it’s because of all the Big Macs I used to eat. WHEN I WAS TWO.
(No, I didn't actually say that.)
I understand the impulse to blame illness on something, and it's wonderful when evidence-based research helps us stay healthier. But then there are those armchair scientists, keen to "solve" your problems for you. And no matter what plucked-from-the-sky “answer” these people claim to have found, there is always the lurking suggestion that it’s your fault you got sick. You drank milk. You didn’t buy organic this or that. Your life is too full of stress/bad karma/negative energy blah blah whatever.
I’ve never felt the need to say to someone, “ooh, do you think you got [fill in the blank] because your Mom sat you too close to the microwave?”
It would be stupid. It would be wrong. And it would be rude.
We should, of course, take care of ourselves: eat well, exercise and all of that fun stuff, and if for whatever reason we don’t, then yes, we’re quite a bit more likely to develop certain conditions.
In the end, though, I don’t think there is any blame. We’re human, and we get sick. That doesn’t mean I never get angry, just that I don’t think that anger belongs anywhere specific. Sometimes life sucks. You pick up and keep going. You enjoy what you love. You try to be responsible. You work to accept that there are things you’ll never know.
And sometimes, you keep your ill-considered opinions to yourself.
(I feel much better now.)
I will tell you.
I’m happy to talk about RA. It’s nice to be able to be open about my arthritis occasionally, and I’d very much prefer a few curious questions to awkward silence. What drives me crazy is when people who don’t know anything about this disease start trying to figure it all out for me.
Last night I visited a friend who'd recently spent a night in hospital. We chatted about her stay, her doctors, how well she's doing. It was, overall, a very pleasant visit. At one point, though, she asked how I’ve been feeling, and I mentioned my current flare-up. This led to lots of questions about RA: what does it feel like, when did I get it, how long will I have it.
Then she said:
“Don’t you think you probably got it because you had milk as a baby?”
Sorry, what?! No. I think it’s because of all the Big Macs I used to eat. WHEN I WAS TWO.
(No, I didn't actually say that.)
I understand the impulse to blame illness on something, and it's wonderful when evidence-based research helps us stay healthier. But then there are those armchair scientists, keen to "solve" your problems for you. And no matter what plucked-from-the-sky “answer” these people claim to have found, there is always the lurking suggestion that it’s your fault you got sick. You drank milk. You didn’t buy organic this or that. Your life is too full of stress/bad karma/negative energy blah blah whatever.
I’ve never felt the need to say to someone, “ooh, do you think you got [fill in the blank] because your Mom sat you too close to the microwave?”
It would be stupid. It would be wrong. And it would be rude.
We should, of course, take care of ourselves: eat well, exercise and all of that fun stuff, and if for whatever reason we don’t, then yes, we’re quite a bit more likely to develop certain conditions.
In the end, though, I don’t think there is any blame. We’re human, and we get sick. That doesn’t mean I never get angry, just that I don’t think that anger belongs anywhere specific. Sometimes life sucks. You pick up and keep going. You enjoy what you love. You try to be responsible. You work to accept that there are things you’ll never know.
And sometimes, you keep your ill-considered opinions to yourself.
(I feel much better now.)
Monday, March 15, 2010
The post-hospital gift
Tonight I'm visiting a friend who's recently home from hospital. I want to slip out of the office this afternoon and get something to bring her, but I'm not sure what.
The last time I was in hospital, all I wanted was for somebody to bring me something real to eat, and then post some sort of notice informing the food people once and for all that I did not want any coffee. (I was desperate for tea and they kept saying they'd bring it, and then turning up with coffee. Torture!) Once I was home, I appreciated the books, magazines and DVDs friends brought over, but I'm not quite sure what this friend likes to read.
I'm waffling between these ideas:
A plant or some flowers (not a particularly inspired choice, but it's spring and she's been stuck indoors),
A pretty bound journal, or
Some interesting and relaxing teas from the market.
Any other fun suggestions? Any great sick-at-home gifts you've gotten? What would you want?
The last time I was in hospital, all I wanted was for somebody to bring me something real to eat, and then post some sort of notice informing the food people once and for all that I did not want any coffee. (I was desperate for tea and they kept saying they'd bring it, and then turning up with coffee. Torture!) Once I was home, I appreciated the books, magazines and DVDs friends brought over, but I'm not quite sure what this friend likes to read.
I'm waffling between these ideas:
A plant or some flowers (not a particularly inspired choice, but it's spring and she's been stuck indoors),
A pretty bound journal, or
Some interesting and relaxing teas from the market.
Any other fun suggestions? Any great sick-at-home gifts you've gotten? What would you want?
Saturday, March 13, 2010
Good things
Yes, I am feeling a bit crappy lately, but there are lots of good things happening, too.
Here's what I'm working on in singing lessons:
At about 1:18, it's especially gorgeous. Difficult but definitely worth it.
I don't have my own computer - I use a work laptop for everything. That means I have to get a computer before I go to school, and that is exciting. It's nice (and rare) when something you really want is also something you need.
I am currently without a book to read, which means I will soon be delving into something new and delicious.
Then, of course, there are all of your thoughtful, understanding and wise comments. You remind me that a) you've been through it too, and b) I'm not just being a great big baby.
Thank you.
Here's what I'm working on in singing lessons:
At about 1:18, it's especially gorgeous. Difficult but definitely worth it.
I don't have my own computer - I use a work laptop for everything. That means I have to get a computer before I go to school, and that is exciting. It's nice (and rare) when something you really want is also something you need.
I am currently without a book to read, which means I will soon be delving into something new and delicious.
Then, of course, there are all of your thoughtful, understanding and wise comments. You remind me that a) you've been through it too, and b) I'm not just being a great big baby.
Thank you.
Friday, March 12, 2010
Pain Management Diary
Yesterday I swallowed my pride – or whatever it is that’s been preventing me from pushing my appointment with my rheumatologist forward.
I emailed her wonderful NP and described the increased pain and inflammation I’ve been experiencing, as well as the pelvic/SI joint pain. Email is great. I hate feeling whiny, and I didn’t want to phone and announce all my health information to the office. This way, I was able to give the NP a brief description of symptoms and ask her whether she thought it worthwhile for me to come in early. She did, and I’ll be seeing my rheumatologist in a week and a half. (She also made me promise never to feel like I’m bothering her with anything. I love her.)
I know I’m in more pain than I have been in several years. I know I hurt more in the mornings. I know I hurt in new places. But I’ve never been good at describing that pain effectively. RA is my “normal,” and I don’t pay attention to it in the way my doctor probably sometimes wishes I did.
I figure if I am going to the trouble of making a special appointment, and my very busy rheumatologist is going to the trouble of seeing me, I’d better make it worthwhile. I went hunting for a pain diagram this morning and found the Arthritis Society’s Pain Management Diary. The Society offers a number of its publications for download online, and this one looks like it’s just what I need. In eleven pages, it provides space to describe where pain occurs, when pain occurs, what it feels like, and what helps it. It offers a list of descriptors to help patients describe pain more effectively.
I printed out the entire thing, and then minimized the pain diagram and printed a pile of those, so I can keep track of pain throughout the day until my appointment. I don’t know whether I’ll actually show all of this to my doctor (it’s a bit long), but it will hopefully help me clarify things in my own mind before I talk to her.
You can download the Arthritis Society's Pain Management Diary as a pdf here.
I emailed her wonderful NP and described the increased pain and inflammation I’ve been experiencing, as well as the pelvic/SI joint pain. Email is great. I hate feeling whiny, and I didn’t want to phone and announce all my health information to the office. This way, I was able to give the NP a brief description of symptoms and ask her whether she thought it worthwhile for me to come in early. She did, and I’ll be seeing my rheumatologist in a week and a half. (She also made me promise never to feel like I’m bothering her with anything. I love her.)
I know I’m in more pain than I have been in several years. I know I hurt more in the mornings. I know I hurt in new places. But I’ve never been good at describing that pain effectively. RA is my “normal,” and I don’t pay attention to it in the way my doctor probably sometimes wishes I did.
I figure if I am going to the trouble of making a special appointment, and my very busy rheumatologist is going to the trouble of seeing me, I’d better make it worthwhile. I went hunting for a pain diagram this morning and found the Arthritis Society’s Pain Management Diary. The Society offers a number of its publications for download online, and this one looks like it’s just what I need. In eleven pages, it provides space to describe where pain occurs, when pain occurs, what it feels like, and what helps it. It offers a list of descriptors to help patients describe pain more effectively.
I printed out the entire thing, and then minimized the pain diagram and printed a pile of those, so I can keep track of pain throughout the day until my appointment. I don’t know whether I’ll actually show all of this to my doctor (it’s a bit long), but it will hopefully help me clarify things in my own mind before I talk to her.
You can download the Arthritis Society's Pain Management Diary as a pdf here.
Thursday, March 11, 2010
Illness and Embarrassment
My heart went a little nuts this morning.
I was at my desk, sipping tea and writing. The office around me was unusally quiet: everyone's busy, everyone's tired.
Suddenly, my pulse shot way up and my chest tightened. That's not unusual, but it almost always lasts only a couple of beats. Two or three rapid heartbeats, and it's over. This time, it kept going. I responded with my usual completely random maneuver: a deep breath, held, and total stillness. (I have absolutely no idea why I do this, but it's instinctive.)
It still only lasted for seven or eight seconds, but it was long enough for the thought of saying something to my coworkers to enter my mind.
What would I have said? I have a feeling "Guys, something's going on with my heart," would just freak people out, but that's about all I'd have been capable of if this had gone on any longer.
How embarrassing would that have been?
Illness is embarrassing. It does require us to set aside our pride and answer questions we'd rather not, submit to poking and prodding by relative strangers, fail spectacularly at seemingly minor tasks.
I'm glad things settled down before I'd had the chance to whip the office into a frenzy, but all the same, perhaps I should put some thought into what I would do if I experienced any kind of cardiac "event" at the office. The possibility is, I suppose, not entirely remote, and if it ever does happen, I'd like to handle it as rationally and as effectively as possible. No scaring people, no panicking.
I'm especially close with my cube-mate, and she knows I've got "a heart condition." I could say, "Jo, I'll probably be fine, but my heart feels kind of funny right now." Or, "My heart is racing. Could you make sure you stay here until it's better?"
Still probably kind of scary, but better than "something's wrong with my heart!"
(Meanwhile, I am all better now. Whatever it was has come and gone, and I am now going to step outside and enjoy some sun.)
I was at my desk, sipping tea and writing. The office around me was unusally quiet: everyone's busy, everyone's tired.
Suddenly, my pulse shot way up and my chest tightened. That's not unusual, but it almost always lasts only a couple of beats. Two or three rapid heartbeats, and it's over. This time, it kept going. I responded with my usual completely random maneuver: a deep breath, held, and total stillness. (I have absolutely no idea why I do this, but it's instinctive.)
It still only lasted for seven or eight seconds, but it was long enough for the thought of saying something to my coworkers to enter my mind.
What would I have said? I have a feeling "Guys, something's going on with my heart," would just freak people out, but that's about all I'd have been capable of if this had gone on any longer.
How embarrassing would that have been?
Illness is embarrassing. It does require us to set aside our pride and answer questions we'd rather not, submit to poking and prodding by relative strangers, fail spectacularly at seemingly minor tasks.
I'm glad things settled down before I'd had the chance to whip the office into a frenzy, but all the same, perhaps I should put some thought into what I would do if I experienced any kind of cardiac "event" at the office. The possibility is, I suppose, not entirely remote, and if it ever does happen, I'd like to handle it as rationally and as effectively as possible. No scaring people, no panicking.
I'm especially close with my cube-mate, and she knows I've got "a heart condition." I could say, "Jo, I'll probably be fine, but my heart feels kind of funny right now." Or, "My heart is racing. Could you make sure you stay here until it's better?"
Still probably kind of scary, but better than "something's wrong with my heart!"
(Meanwhile, I am all better now. Whatever it was has come and gone, and I am now going to step outside and enjoy some sun.)
Tuesday, March 9, 2010
Touché, Rheumatoid Arthritis. Touché.
After all these years, you still possess the element of surprise.
I've been having pelvic/abdominal pain for six months or so. As the ruptured cyst I had a couple of years ago is not an experience I particularly wish to repeat, I went to the doctor. I had exams and ultrasounds (all of which were clear). I went to the doctor again.
Tentative diagnosis? Rheumatoid arthritis of the SI (sacroiliac) joint.
Huh?
Apparently, pelvic pain is a frequent companion of SI joint problems and can make them difficult to diagnose. In my case, it's a throbbing that originates in the small of my back and radiates across my pelvis and down my left leg.
I must admit I felt a little silly at first. Shouldn't I know this disease like the back of my hand by now? Shouldn't I be immune to surprises? After another exam and a review of my ultrasounds, the doctor, who I don't know well at all (I definitely don't go to my GP/uncle with this sort of thing), told me I'd probably injured the joint.
"You should take some advil to bring down the inflammation," she said.
There's another joint in there? And it's inflamed? In my head, the pieces started plonking into place.
"I'm already on Enbrel, methotrexate and naproxen for rheumatoid arthritis," I replied, looking pointedly at the list I'd made for her on my first visit.
And so began a discussion of RA of the SI joint - an issue I plan on delving into in greater detail with my rheumatologist. I suppose this is one of those occasional unwelcome reminders that, despite my familiarity - even my relative comfort - with this disease, it's still unpredictable. This is a new kind of pain for me. It's insistent, throbbing, distracting. I can't remember how my most severely active joints felt when I was a kid, but I wonder if it was something like this.
All that said, it's kind of nice to be able to blame what I thought was an entirely separate problem on RA. It's a handy catch-all for so many symptoms, and it's very nice to know I'm not heading for another ruptured cyst and all the good times (read: hysterical crying) that go along with it.
Time to break out the artillery: hot baths, heating pads, and anti-inflammatories. Woo-hoo.
I've been having pelvic/abdominal pain for six months or so. As the ruptured cyst I had a couple of years ago is not an experience I particularly wish to repeat, I went to the doctor. I had exams and ultrasounds (all of which were clear). I went to the doctor again.
Tentative diagnosis? Rheumatoid arthritis of the SI (sacroiliac) joint.
Huh?
Apparently, pelvic pain is a frequent companion of SI joint problems and can make them difficult to diagnose. In my case, it's a throbbing that originates in the small of my back and radiates across my pelvis and down my left leg.
I must admit I felt a little silly at first. Shouldn't I know this disease like the back of my hand by now? Shouldn't I be immune to surprises? After another exam and a review of my ultrasounds, the doctor, who I don't know well at all (I definitely don't go to my GP/uncle with this sort of thing), told me I'd probably injured the joint.
"You should take some advil to bring down the inflammation," she said.
There's another joint in there? And it's inflamed? In my head, the pieces started plonking into place.
"I'm already on Enbrel, methotrexate and naproxen for rheumatoid arthritis," I replied, looking pointedly at the list I'd made for her on my first visit.
And so began a discussion of RA of the SI joint - an issue I plan on delving into in greater detail with my rheumatologist. I suppose this is one of those occasional unwelcome reminders that, despite my familiarity - even my relative comfort - with this disease, it's still unpredictable. This is a new kind of pain for me. It's insistent, throbbing, distracting. I can't remember how my most severely active joints felt when I was a kid, but I wonder if it was something like this.
All that said, it's kind of nice to be able to blame what I thought was an entirely separate problem on RA. It's a handy catch-all for so many symptoms, and it's very nice to know I'm not heading for another ruptured cyst and all the good times (read: hysterical crying) that go along with it.
Time to break out the artillery: hot baths, heating pads, and anti-inflammatories. Woo-hoo.
Monday, March 8, 2010
Still here
I am still here. Just coming down with a cold, recoving from four performances and three very late nights this weekend, and catching up on work.
"Joseph" is done, which I'm both sad and relieved about. I'll have a lot more free time now, but I'll miss the music and the people. I should have some fantastic photos to show you soon.
I have lots of your posts to catch up on, and lots to write about. I'll return to regular blogging shortly.
"Joseph" is done, which I'm both sad and relieved about. I'll have a lot more free time now, but I'll miss the music and the people. I should have some fantastic photos to show you soon.
I have lots of your posts to catch up on, and lots to write about. I'll return to regular blogging shortly.
Friday, March 5, 2010
"Hello from the past"
Last night I was padding around my apartment barefoot and accidentally pulled up a piece of my wooden floor. It's that ubiquitous parquet that apparently covers the floors of every single one-bedroom apartment in Ontario, and there are a few loose bits here and there.
I was standing there trying to shove it back in when I thought, "wouldn't it be cool if someone had stashed a note under there?" So I reached down to pull it up, and sure enough, a corner of lined paper had been folded up and tucked beneath. I found this:
It made me smile. And it made me think, what was I doing when Justin was writing this and stuffing it under the boards? In April 2007, I was living in downtown Toronto, knee deep in Shakespeare, Chaucer and Dickens, writing furiously to finish my MA and taking advantage of the six (six!) amazing sushi restaurants encircling my building. I was enjoying my freedom after several months of near-daily hospital trips. I was exploring the city as it came slowly back to life after a long winter.
Life changes a lot in three years, though sushi and Shakespeare remain.
Hello from the future, Justin!
I was standing there trying to shove it back in when I thought, "wouldn't it be cool if someone had stashed a note under there?" So I reached down to pull it up, and sure enough, a corner of lined paper had been folded up and tucked beneath. I found this:
Life changes a lot in three years, though sushi and Shakespeare remain.
Hello from the future, Justin!
Wednesday, March 3, 2010
Midday slump
Most workdays, I start out feeling reasonably well and get progressively more blah as the day goes on. By two o’clock, I’m often tired, swollen and sore and would like nothing more than to go home and nap. A few weeks ago my hip hurt so much I escaped to the bathroom and threw up.
I’m out of that particular woods for now, but I still often hit that mid-afternoon wall. Since napping is not an option, I’ve had to come up with other ways to get myself over that hump. Now, this is not much of a list - most of these ideas are born of desperation and exhaustion, and none of them really work all that well.
If you’ve got better ideas, do tell.
1. Pain pills. Naproxen and Tylenol – not that they do much.
2. Caffeine.
3. Fresh air, if I’m not too busy. If I can combine fresh air and caffeine with a walk to Starbucks, so much the better.
4. Contorting myself into odd stretchy positions in my chair, which, luckily, is big and comfy.
5. Bathroom naps. (I don’t actually sleep – I just shut my eyes for a minute. According to The Globe and Mail, there are a “legion of other toilet nappers out there.” Gross but true.)
6. Vomiting. Always a good time. (I am kidding. I do not do that for fun.)
7. Blogging. Distraction!
As I say, there’s no magic bullet in there. All of these just feel like not-enough, temporary solutions to a problem that isn’t going anywhere. But it’s one reason I’m getting out of this industry – I’ll still be busy, probably more than I am now, but my schedule will be more varied. (And, I can study in bed.)
Do you have a mid-afternoon slump? How do you get over it?
I’m out of that particular woods for now, but I still often hit that mid-afternoon wall. Since napping is not an option, I’ve had to come up with other ways to get myself over that hump. Now, this is not much of a list - most of these ideas are born of desperation and exhaustion, and none of them really work all that well.
If you’ve got better ideas, do tell.
1. Pain pills. Naproxen and Tylenol – not that they do much.
2. Caffeine.
3. Fresh air, if I’m not too busy. If I can combine fresh air and caffeine with a walk to Starbucks, so much the better.
4. Contorting myself into odd stretchy positions in my chair, which, luckily, is big and comfy.
5. Bathroom naps. (I don’t actually sleep – I just shut my eyes for a minute. According to The Globe and Mail, there are a “legion of other toilet nappers out there.” Gross but true.)
6. Vomiting. Always a good time. (I am kidding. I do not do that for fun.)
7. Blogging. Distraction!
As I say, there’s no magic bullet in there. All of these just feel like not-enough, temporary solutions to a problem that isn’t going anywhere. But it’s one reason I’m getting out of this industry – I’ll still be busy, probably more than I am now, but my schedule will be more varied. (And, I can study in bed.)
Do you have a mid-afternoon slump? How do you get over it?
Monday, March 1, 2010
Bring back bribery!
There are lots of reasons people fail to comply with medical advice. Fear, finances, a feeling that they know better. Though I generally make every effort to carry out the treatment plans my doctors offer me, when I am noncompliant, there’s only one reason for it: boredom.
Total and utter boredom.
Chronic illness is not very exciting. After those early firsts, it all becomes old hat fairly quickly. Or at least “I’ve already done this and didn’t like it the first time” hat. Injections? Boring. Pills? Boring. Bloodtests? Boring. ICD checks? BORING.
And sometimes, though I hate to admit it, I flake out on the boring stuff. I put off bloodtests, take morning pills at noon, inject Enbrel at one o’clock in the morning because I was doing something more interesting earlier. And I never, ever keep up with physio.
After my ICD implant, I wasn't allowed to lift my left arm for three weeks so that the leads (wires that run from the device into my right atrium and ventricle) had time to settle in. After that third week, I was given exercises to regain strength and range of motion. They were boring. How many times could I walk my fingers up and down a wall without passing out from lack of stimulation? Answer: about three.
Now it’s been almost two years, and my left arm is still weak and stiff. Serves me right, I suppose.
I seem to remember all of these things being more interesting when I was a kid. I got a finger puppet for every bloodtest. Physio took place in a warm pool with all sorts of fun toys. When I was really young, pills were mashed up in apple sauce. Staying over at the hospital was like Christmas morning.
Now what do I get for doing all this stuff? Parking fees, hours in waiting rooms, lost work time, less time to read good books, write, sing and do all the other things I love.
So I say it’s time to bring on the treats – and since I’m older now, I think they should increase accordingly in coolness.
I am going for a bloodtest tonight, and I would like an iPod Touch, please. And some cake.
Total and utter boredom.
And sometimes, though I hate to admit it, I flake out on the boring stuff. I put off bloodtests, take morning pills at noon, inject Enbrel at one o’clock in the morning because I was doing something more interesting earlier. And I never, ever keep up with physio.
After my ICD implant, I wasn't allowed to lift my left arm for three weeks so that the leads (wires that run from the device into my right atrium and ventricle) had time to settle in. After that third week, I was given exercises to regain strength and range of motion. They were boring. How many times could I walk my fingers up and down a wall without passing out from lack of stimulation? Answer: about three.
Now it’s been almost two years, and my left arm is still weak and stiff. Serves me right, I suppose.
I seem to remember all of these things being more interesting when I was a kid. I got a finger puppet for every bloodtest. Physio took place in a warm pool with all sorts of fun toys. When I was really young, pills were mashed up in apple sauce. Staying over at the hospital was like Christmas morning.
Now what do I get for doing all this stuff? Parking fees, hours in waiting rooms, lost work time, less time to read good books, write, sing and do all the other things I love.
So I say it’s time to bring on the treats – and since I’m older now, I think they should increase accordingly in coolness.
I am going for a bloodtest tonight, and I would like an iPod Touch, please. And some cake.
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