Friday, October 30, 2009
I never know what to say when I'm asked to rate my pain. My worst pain ever was from a ruptured ovarian cyst a couple of years ago that dropped me to the floor and had me so hysterical I didn't even care that I was barely dressed when my Dad picked me up and put me in bed. I was pulling my own hair to try to focus on something else. At the time, nobody asked me to rate how I felt, but I probably would have said 8 or 9.
You can always feel better, and you can always feel worse. Dr. D's advice: never say 10.
Wednesday, October 28, 2009
Dr. Michael Breus is a sleep specialist, and his Insomnia Blog offers some great insights into the science of sleep, and tips for sleeping better.
A few years ago, my Dad bought me a CD in which Dr. Breus leads you through guided physical and mental relaxation. It's wooooonderful. I relax just hearing him talk. It's probably a good thing I don't know him in real life.
Sleep is a problem for many with chronic pain conditions, and yet I think it's one of the most important things we can do for ourselves. Lately, my right hip and ankle have been bothering me a lot at night, and it's usually enough to keep me awake at least for a while. Here are some of the things I do to (try to) sleep better:
- A warm bath before bed.
- A cup of warm milk and a small snack - I can't sleep when I'm hungry.
- A good book. Not an exciting book.
- Dr. Breus's relaxation program on my iPod.
- Pillows, pillows, pillows. Elevating my hip and ankle seems to help, and I use a neck pillow with another, regular pillow underneath it to support my neck.
- Imagery. This doesn't always work because my mind is often racing, but sometimes imagining my dog sprawled across the bed, the sound of rain, or peaceful scenes can help.
- Diaphragmatic breathing.
- A hot water bottle at the foot of the bed, and sometimes a muscle cream on my most painful joints.
- Naproxen before bed. I only do this when I'm in serious pain. There's sort of an honour system between my cardiologist, my rheumatologist and me. Too many NSAIDS can mess with my blood pressure, so I only take it when I really need it.
- The occasional valium. Not very often, but I do sometimes take it when I absolutely must be up early for something important and I know I'm going to have a lot of trouble falling asleep.
These don't always work. Often I don't fall asleep until 1:30 or 2, or on really awful nights, 3 or 4. But they're better than nothing.
What do you do to help yourself sleep? Does pain keep you awake?
Monday, October 26, 2009
I get angry at how long it takes to do things, and tell myself I'll be late for work and look horribly irresponsible. I get angry when I drop things, like entire cartons of milk, and tell myself I shouldn't be living alone if I can't even get breakfast without destroying my apartment. I get upset when I can't wear the clothes I want because the buttons or zippers are too much for my fingers, and I tell myself I look awful. I even get angry when I try to be kind to myself. There are so many others who have it so much worse, I say to myself. So why should I get to take a nap? Why should I ask for help?
When I wrote about how much pain I was in last week, and how difficult everything felt, Sara from The Single Gal's Guide to Rheumatoid Arthritis commented that it's just as important to give myself a break mentally as it is to take it easy physically. I really needed someone to remind me of that.
I've always filled my life to the brim and striven for perfection in school, at work, and in just about every other activity. In Being Kinder to Myself, Remicade Dream writes about how incompatible perfectionism is with RA. It's a lesson I know I would do well to heed. I volunteer with the Arthritis Society and with the Architectural Conservancy of Ontario. I work full-time and do some freelance writing on top of that. I take singing lessons, sing in a choir and act in community theatre. I've already completed two post-grad degrees and I'm applying to law schools. Sometimes, I think RA wants me to tone it down a little.
I'm not sure where I got this idea that because others have it worse, I have no right to go easy on myself. Whenever I ask for help, tell someone how rubbish I feel, or give myself a break on any of my responsibilities, I get this instant guilt. Sometimes I even feel funny about blogging; like I'm on here whining about silly, nothing problems when other people have real concerns.
I know that doesn't make a whole lot of sense. I get such a feeling of support and cameraderie from reading other chronic illness blogs, and I never, ever, ever think anyone is whining. And I'm usually the first to tell other people to go easy on themselves when they aren't feeling 100%. Why do I make myself the exception to my own rule?
This weekend, I had a nap. My first nap in ages. I was home seeing my family, and my hip felt awful. I curled up on the couch and my Mom covered me up with a blanket and brought me a warm Magic Bag to drape over my hip. My Dad tiptoed around making sure I got some sleep. Afterwards, I felt much better.So maybe this little flare I'm experiencing is teaching me to slow down and give myself a break. Right now, there are dirty dishes eating up just about all of my already-minimal counter space. My clean laundry is folded in piles, getting wrinklier by the minute. And I'm just going to (try to) let it go.
I'm still not sure how to stop feeling guilty about acknowledging pain and limitation, or why I started in the first place. But I'll try to start doing a better job of listening to that pain. (See? New age-y. I warned you.)
Sunday, October 25, 2009
I know many with autoimmune diseases in the U.S. are being told to wait until after the first round to take the killed vaccine in needle form, but Canada is only offering the needles, so I can get it as soon as it's available to me.
So I'll have to wait a little while longer, but not much - I think our Health Unit is already planning for the next shipment of doses. Really, I just wanted an excuse to post this. Who doesn't love Dr. Spaceman?
Friday, October 23, 2009
First of all, any doctor who implies they have a full understanding of your body is bullshitting you! Some specialists may know a little more about a particular organ or disease, but in the end your body is a mystery and doctors are all just making educated guesses. Doctors know some useful things, but things we don't understand far outnumber the things we do.
I've felt a lot of frustration with the lack of progress in my cardiac diagnosis. Since early 2007, I've been to specialist after specialist and had procedure after procedure, and it seems every time I see another doctor, I hear something different. But they've all been honest. They've all told me there just isn't much known about some arrhythmia disorders yet, and they've warned that we may never have all the answers. I'm still struggling to accept this, but Doctor D's post has reminded me there's a big difference between feeling alone and powerless, and being part of a team that, despite not knowing everything, is dedicated to providing the best care possible.
Some months ago, I had a kidney CT as part of a battery of tests attempting to find the cause of my high blood pressure. "No big deal," I thought as I made my way to the hospital. "A needle, a quick lie-down, and I'll be on my way home." It turned into one of the worst medical experiences I can remember.
It started to go south when I was informed that my shellfish allergy could cause me to react to the contrast agent. The technician went to find a doctor, then came back (without the doctor) and told me everyone thought the risk was probably minimal, so I should just go ahead and sign the consent. I should have asked more questions, but I just wanted to get out of there and finish my Victorian Lit paper.
After I'd signed and followed him into the scan room, the technician didn't say a word to me about what the test would involve. He spoke in a barking monotone:
"Put your gown on."
"Lie down here."
"Lay your arm flat. Lay it flat! WHY can't you lay your arm flat?" (Because I have RA, dickhead!)
This is when things went from frustrating to genuinely upsetting. I've admitted here before that I'm a control freak, and I like to watch whatever's being done to me. So I had my eyes cast down toward my arm as he started the IV. I wasn't craning my neck or trying to sit up. I was just looking down.
"Why are you watching me?" he asked.
"I don't know - I always watch."
"That's weird. Nobody watches. Don't watch."
"But - "
"No. You're not watching." He proceeded to pull my arm out away from my body and shift his weight up against the table in front of me with his arm planted firmly across my abdomen, so that there was no way I could move or see anything. It took him 5 or 6 pokes before he got it, and all the while I was trying to tell him that the other arm is always better.
Then he put my arm back and marched out of the room without saying a word. By this point I had tears in my eyes. I blinked them away. I hate, hate, hate crying at the hospital, and I try never to do it. He didn't tell me when the test would start; about ten minutes in, I thought it must be nearly finished, when suddenly I heard the machine whirr to life.
I still have no idea why the test was so unpleasant; I know it's not for most people, and I wasn't expecting it to be. But it was awful. I felt what I can still only describe as something icy slicing through me. I gasped and felt my stomach churn. I thought I had lost control of my bladder and could feel warm liquid spreading across the table beneath me. I turned my head to throw up over the side of the table, and suddenly, it all stopped. The machine was still and silent. I felt fine. I swallowed back the bile that had risen in my throat and laid my head back on the table.
"It's all right," I told myself. "So you peed. You're in a hospital! People do worse than that."
But I hadn't peed. The technician emerged, still wordless, pulled the IV out of my arm and told me to get dressed and go home, which I did, a little shakily. In the elevator on the way down, I noticed hives across my arms and chest. I did another stupid thing and didn't tell anyone. I bought Benadryl at the pharmacy in the hospital lobby, took two and sat down on a bench to wait for it to pass or get worse. It passed. I walked through the rain to the subway and went home.
I remind myself of that experience sometimes when I'm feeling frustrated and powerless. That guy was a massive jerk. And maybe he's a nice guy who was just having a massive-jerk kind of day. He made me feel small, helpless and alone.
It's much nicer to feel like we're all in this helpless thing together.
Thursday, October 22, 2009
It makes me happy every time I see it.
Wednesday, October 21, 2009
I generally make it a rule not to read the comments on CBC news stories. They're usually beyond ridiculous and often downright offensive. But I made the mistake of scrolling down to read them on this story. Among the piles of comments decrying sperm donation and insisting that people are "barren for a reason", the idea that these children were somehow damaged goods, and that nobody with a genetic condition such as HCM should even think of procreating, was clearly discernible.
This is a careless and contemptible attitude to take toward people with congenital cardiac conditions. It's something we all really struggle with - even me, a single girl with no immediate plans to have children. No one who is aware of their condition takes the decision to have children lightly. The vast majority who do have children ensure they are carefully monitored for any abnormalities.
I've been told I can have a healthy pregnancy. In long discussions with my cardiologist and my genetic counsellor, I've learned that many, many people with HCM decide to have children. Great, long, healthy lives are the norm with monitoring and treatment. And though no less than five members of my family have HCM, not one of us has led a less productive life because of the condition. I can't be a marathon runner (well, I can't be that anyway). With my ICD I can't go through airport security or become a welder. Who cares?
So, in closing, shut up CBC idiots. My "no reading comments" rule is now reinstated.
Tuesday, October 20, 2009
As much as I love living on my own, there are days when I wouldn't mind a personal assistant to do all of the opening, closing and lifting. This is when I find myself getting frustrated. Making dinner shouldn't hurt. Putting my laundry away shouldn't hurt. And now that it's gotten so much cooler outside, my fingers become absolutely useless the second I step outside in the morning. No good for opening doors, zipping zippers, or turning keys.
I know I need to take a step back, simplify my routine and do things more slowly.
Monday, October 19, 2009
One of only two family physicians in my small hometown (the other being my uncle), he knew absolutely everyone. He had delivered most of the children I went to school with; he'd delivered their parents, too, set their broken arms and stitched their wounds. Just about everyone has a story or two about him.
This weekend I went with my family to one of those ubiquitous small-town church evenings. Copious cups of tea and coffee were served and slurped, home-made banana bread was liberally buttered and handed round on paper napkins. People milled about, gossiping and reminiscing - it was a room filled with people who had known each other's parents and grandparents, and whose grandparents would have been able to say the same.
An older woman who has known me since birth came over to ask me how the Arthritis Walk had gone. She set down her coffee and touched my arm.
"I've been wanting to tell you something," she said.
"I remembered something recently. When you were just little, I went to see your grandfather in his office. I can't remember what it was for now.
When he had finished the exam, I asked how you were doing. He told me you had rheumatoid arthritis. 'And I can't do anything to help her,' he said. And he cried. Your grandfather!"
My grandfather! I don't think I saw him cry in all the years I knew him. He passed away seven years ago, but he suddenly seemed three-dimensional again. He'd been the first to suspect RA when my parents brought me to him, knees red and swollen and unable to climb from my bed. I suppose he must have felt helpless.
Doctor Grandpa - that's what we always called him. I hope he knew I didn't need him to cure me. I hope he knew he helped me in so many more important ways.
Saturday, October 17, 2009
Anyway, I was curious as to why, despite having dental coverage through my employer, I'd had to pay for a big chunk of my previous appointment. Turns out my insurance will only cover silver fillings. Silver!
I guess this is another incentive to try and get over my super-human gag reflex and wear my mouth guard.
Friday, October 16, 2009
There's even a body wash - how depressing. Preying upon fear is one of the oldest tricks in the marketing book, and now these companies are also able to take advantage of North America's increasing faith in the anti-scientific.
Yes, pharmaceutical companies are big business and we would all do well to treat the information they disseminate with care. But this is how we should approach all aspects of our healthcare, whether we are in rude health or chronically ill. There is a popular image of the evil scientist laughing maniacally over his test tubes as innocent victims line up to be injected with "toxins", that nebulous buzzword. It's getting old.
I'll be getting the vaccine.
Thursday, October 15, 2009
Usually I manage with 6 or 7 hours of sleep a night, but every once in a while it catches up with me and I just crash. I can feel another one of those weeks coming on now. Last night I slept at my parents' house after a late meeting, and planned on getting up at 6:30 a.m. to head to another meeting about an hour away. It's a good thing I did stay over there; I was awakened at 7:30 by my Dad yelling up the stairs. There's nothing quite like panic to perk you up in the morning. I leapt out of bed, threw on clothes, ate breakfast in the car and made it to my meeting on time.
It's bitterly cold out, or at least it feels that way for mid-October. It's grey, windy, and supposed to snow tonight.
I think the elements are all combining to try and push me back into bed.
Wednesday, October 14, 2009
When you're a single woman picturing the guy of your dreams, what matters a heck
of a lot more than how he handles a kayak is how he handles things when you're
This is just as important for women, and indeed men, with chronic illness to understand as it is for the patients Dr. Schoenthaler sees.
My high school boyfriend was a jerk who didn't want me to go to university. In winter, I used to rest the back of my right hand against the ice-chilled window of his car to relieve the pain and inflammation in my wrist and finger joints. It made him furious; It didn't hurt that much, he'd say, and I was leaving marks on the glass. That attitude extended into just about every aspect of what I now know was a pretty unhealthy relationship.
Some years later, I dated a wonderful guy who is still a good friend, but who somehow couldn't be there for me during that crazy second term of grad school when I was spending every other day at the hospital. Living far from family, in a new city with no close friends, I desperately wanted him to come with me just once - even to sit in the waiting room - or to talk through the tests, pills, injunctions from doctors and new diagnoses that were spinning through my head at all hours.
So now, like Dr. Schoenthaler, I have my own set of standards that any serious contender must meet:
- He can't be squeamish, afraid of hospitals or perennially suspicious of doctors.
- He must make an effort to understand my illnesses, even if he can never really know how it feels to have them.
- He must understand and accept my physical limitations, and be willing, occasionally, to help me with things I can't do.
- He must be willing and able to be there, at the hospital, in the doctor's office, or even just at home on the couch when I'm feeling like garbage. Not always. But definitely sometimes.
Tuesday, October 13, 2009
We were puzzled, until I told him about the pleurisy I developed after my ICD implant surgery. Pleurisy occurs when the pleura, which line the lungs, become inflamed as a result of trauma or infection and prevent the lungs from expanding. It was one of the most painful experiences of my life. During acute episodes, it felt like I was suffocating; like someone was stabbing the air out of my lungs every time I tried to inhale. I cried. I threw up. I panicked, the first time, because I had no idea what was happening. And now that P. and I have talked about it, I've realized that I also started taking the tiniest, shallowest breaths I could to avoid triggering more pain. It was probably a conscious effort at first, but over the past year and a half it's become automatic. Now when I pay attention to my breathing, I notice I'm still taking those itty-bitty breaths - my chest doesn't even move.
P. thinks I've developed a fear of breathing deeply. I hope he's right, because if this is psychological, I know I can overcome it if I work hard enough. My homework is to lay on the floor taking the most enormous breaths I can; the hard floor beneath me will prevent my shoulders from rising and force the air down deep. So, I've got a date with my floor tonight - here's hoping it'll make a difference.
Friday, October 9, 2009
I called Dr. Cufflinks' office yesterday, and it's a good thing I did. When I asked his secretary if he was aware of the procainamide infusion I'm supposed to be having, as per Dr. Sneakers' request, she said that Dr. Cufflinks would want to wait to see me until I'd had that, then added, "but we haven't heard anything about it. Not that that's a surprise; they're in their own universe over there." Over there meaning a few feet away in the same hospital wing - their receptionists share a desk! I was just happy to hear I wasn't the only one who was feeling that way.
I vastly prefer email as it means I have everything in writing (and also because phoning during business hours means phoning from my open-plan office, where everyone can hear me). And it's getting a bit easier to keep track of test results as the three hospitals in my city are now all on a single computer network, meaning any of my doctors has immediate access to the records of any of my other doctors. That takes away a lot of the frustration of trying to ensure the correct notes and results are shared with the correct people - although it didn't stop the radiology department from taking the wrong spinal x-ray, as I discovered when I got to the orthopedic surgeon last week.
It would still be great to be able to round up my Toronto docs and sit them down with my current team to try and clear everything up, but this is definitely a step in the right direction. In my work, I often hear that trying to organize members of the press for an event or meeting is like "herding cats". As happy as I am with my healthcare team, sometimes I think the description is an equally fitting one for the medical profession.
That said, this is a definite improvement.
Thursday, October 8, 2009
My office's IT consultant, who's in his early 30s (and not overweight, and not a smoker), was with another client last week when he began experiencing shooting pains down his left arm and tightness in his chest. Luckily, that client happened to be a doctor's office and he was able to receive immediate treatment. He actually looked pretty good today.
Still, I think if it were me, I might take a little time off.
Wednesday, October 7, 2009
I probably have Interstitial Cystitis, according to a uro-gynecologist I saw a couple of years ago after I'd decided it was time to figure out why I have to pee about thirty times a day (really). She prescribed a relatively new medication, an extremely restrictive diet, and told me to think about coming back for a cystoscopy.
Monday, October 5, 2009
In all, more than $13,000 was raised to put toward arthritis research. The team who won for most money raised was made up of the staff from my rheumatologist's office! They made more than $2,000 in sponsorships.
It was great to see so many people - all different ages, men and women - with arthritis. I walked for a while with a woman whose husband was pushing her in a wheelchair due to a major flare in her knee. I also met a ten-year-old girl diagnosed as an infant. And, of course, there were many walkers without arthritis who were there to support a friend or loved one.
I had never met anyone else with arthritis (at least, anyone under about 80) until I began volunteering with the Arthritis Society. I have so much fun with these people, many of whom are close to my age and facing the same challenges.
It was a great day, and I'm excited to do it again next year.
Saturday, October 3, 2009
It was not to be. I got a phone call yesterday that I'm to go back to my primary cardiologist, Dr. Cufflinks, this month. I really like him, and maybe I can talk to him about how frustrated I felt after seeing Dr. Sneakers in September. I'm not sure what he wants to see me for; perhaps we'll compare styling products (the man sports quite the coiffure).
I just hate taking so much time off from work. I always get everything done, and when I have an appointment I either come in early or work late from home that evening. But, I'm the only person in my office who's always taking off for the hospital. My bosses know, vaguely, that I have some health issues, and they know that I work hard and make up for any time I need off. I've told them I have a "heart condition", and I had to open up about my arthritis as well when I was asked to go golfing with them. But they don't know that my cardiac diagnosis is so fuzzy, and that it's on-going. I should probably sit down with them and make sure they're clear on the fact that I'm likely always going to have more doctor's appointments than anybody else, but I am very conscientious about making up any time I need off.
As a kid, I sort of imagined I'd get into the working world and leave illness in my dust. But it's always there, sticking its nose in.