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If I could have a single wish today, what would it be?

ONE doctor. One doctor with all the answers.

A rheumatologist, cardiologist, electrophysiologist, and GP all rolled into one fabulous doc, who just happens to practice in a clinic with a blood lab, imaging department and pharmacy. (While we're at it, we could throw in some decent magazines and free food, too.)

So I forgot, living in I'm-so-busy-who-cares-how-I-feel land, that shit still happens. My lost voice has become a chesty, rattling, wheezy cough. My inability to use the phone or make myself understood has ceased to be interesting and become incredibly annoying.

Off I went to my usual general practice clinic. My doctor said, "you're on rather a lot of methotrexate. That's a recent change, isn't it? Were you planning to discuss this with your rheumatologist?"

Well, no. That's why I'm here seeing you.

I know it's silly and stubborn, but I will never stop wanting just to be one of those people who can go to the bloody doctor and come away with an answer instead of a diary of appointments that, were I wealthy, might induce me to hire a personal assistant.

Chest X-ray.

Bloodwork.

Follow-up at 8:30 Friday.

A promise to speak with my rheumatologist.

I left in an absolutely foul mood, convinced (and I still am) that the x-ray and bloodwork were a massive overreaction and a waste of everybody's time. I called my Mom at the pharmacy where she works, hoping she'd lend some moral support to my inclination to give them both a miss so I could get some work done. No dice. (And my pharmacist, to whom she ratted me out, backed her up.) Damn.

So I spent much of today in waiting rooms when I should have been writing. I'll be late for work on Friday. I'll be fielding emails back and forth between my rheumatologist, her NP and my GP.

I really want that personal assistant. And if she could bring me a glass of wine and maybe fill in at my office for a few days, I'd make sure she got a hefty Christmas bonus.

No talking!

I had a bad cold or throat thing all last week, and, as usually happens, now that I'm feeling much better my voice has gone. I mean totally gone. I can't make any noise. It just sounds like air coming out.

So here I am at work, feeling fine, and not making a peep. It's been frustrating, but also kind of oddly relaxing. Nobody's asking me for any answers; I'm just sitting quietly. I've gone for walks with friends, and they've talked and I've listened. It's been interesting.  (Although I will be annoyed if this continues - and it's irritating not to be able to use the phone.)

(Meanwhile, my appetite is totally back and I feel great. Tonight I'm making peanut chicken.)

Illness, blame, and living well without a cure

I received a survey about HCM last week from my genetics clinic. Genetic counselling has been both fascinating and reassuring for me. My Dad, uncle, aunt, cousins and I have been found to have an “unspecified variant” - a genetic mutation which has not been previously seen but which, because we all have the same one, is very possibly responsible for our disease. I've learned a lot - including how much is simply not known about congenital cardiac conditions - and I've also got a support network I can call on in the future if I decide to have children.

My counsellor is working toward her PhD, and her survey explores patients' emotional responses to HCM. It gave me a lot to think about. Does HCM depress me? Not really. Does HCM make me feel anxious? Again, not really, now that I’ve got my ICD. Does HCM make me angry? I had to admit, I am sometimes angry at the way it’s changed my family.

What struck me most of all were the questions about what patients believe to be the cause of their HCM. There were lots of reasonable options, like “heredity.” But you could also check boxes such as “my personality,” “my attitude toward life,” or “my emotional state.” I wonder how many will answer “yes.” Do people believe that something inherent in their personalities or their world views made them sick? That illness is a kind of punishment? That seems terribly sad.

Hereditary illnesses make peculiarly good fodder for the kinds of emotional messes the survey hints at. There can be a lot of guilt for parents who pass them on and for family members who owe their treatment and comparative good health in part to the death of a loved one. And with any illness, hereditary or not, there is the “why.”

I’m glad people are doing this research.

I confess to being a bit skeptical about the idea of “cures” for much of what ails us. I know it makes for great marketing when an organization says it’s striving for a cure, but – and no, I’m not a total cynic – I’ve never really been convinced that that idea is helpful or realistic. I think research into treatment for many of these illnesses is of much greater import. I also think that along with that must come research into ways to help patients live better with illness.

I hope the results of this survey enable my counsellor, her team, and maybe even the cardiac specialists who deal with these disorders to better understand their psychological complexity. I don’t see a world in which nobody has a heart problem, but a world in which more people deal with their heart problems positively would be a great thing.

Who goes to your appointments?

A parent? A spouse or partner? A friend? Do you go on your own?

I've gone on my own since I was about eighteen. Of course, as a kid, I was accompanied by one parent or another to every appointment and procedure. When I was eleven and stayed overnight at the hospital, my Mom stayed with my for the first night and only left on the second because I was so out of it I wouldn't have cared either way. They were even there for bloodtests.

Since then, I've almost always gone by myself. One parent or other was there for major procedures, but everything else - scans and other tests, rheumatology and cardiology appointments - I've experienced on my own, including the times when I've heard some not-great news. This was sometimes born of necessity, as when I lived in Toronto, and sometimes simply because I don't mind it. It's simpler, and it allows me to say to myself, quite honestly, "I can do this on my own."

So what's the issue now? Well, the letter I received from the hospital yesterday informs me I've got to bring someone with me to my procainamide infusion. I'd been planning on showing up, having the test and then driving myself to the office. Not an option, apprently.

Sure, one of my parents could drive the hour-and-a-half up to the city to take me, but that's a hassle. That leaves friends - friends I've never allowed so concretely into this part of my life. All of my friends know I'm dealing with health issues, but they don't very often get to see them. What am I afraid of? Putting people out. Showing weakness. Getting news I don't like and having to process it in someone else's presence.
 
On one hand, I'm leaning toward asking my parents. On the other hand, I know there are friends who would say yes in a second, and maybe this is my chance to let them.

(Yikes.)

Sunday Bits

I had an email from my rheumatologist's NP that I've been approved for Enbrel coverage until August, 2011 (and after that, it should be easy to approve again). Phew. So grateful to my wonderful, fabulous, fantastic and amazing rheumatology team.

My procainamide infusion is finally, finally scheduled for May 25. I'll fast after dinner the night before, and then show up at 9. I had one of these pre-ICD, so I'm not particularly nervous, but I am a little apprehensive about going another round with Doctor Sneakers. And I want to know what they'll do with my defibrillator during the test. Will they shut it off? Googling "what happens to my ICD during drug infusion testing?" isn't helping. I know, I'm a dork.

My appetite is in and out. Last night I had an egg and toast, but couldn't do breakfast this morning. I've lost seven pounds this week. My parents have been eyeballing me at mealtimes this weekend - this isn't the first time this has happened, and I know it drives them crazy. As frustrating and uncomfortable (I feel totally deflated) as it is not to be able to eat, they still make me feel safe and warm and fuzzy.

(And yes, my doc and pharmacist are blaming the increased MTX. Here's hoping another week or two will set me straight.)

And finally, I'm loving learning more about all of you through the Sugar Doll blogger award so many have been nominated for. You're all so interesting, and it's great to get to know you better beyond illness.

Have a lovely Sunday.

Ten Things

A very big - and very surprised - thank you to Laurie at Frozen Woman: Life with Rheumatoid Arthritis for nominating me for this:

I get to tell you ten things about myself, and nominate five other fabulous bloggers to tell you ten things about themselves. Here are mine:

1. When I was a kid, I wanted to be a spy. I kept a notebook with me and filled it with my neighbours’ comings and goings – stuff like, “6 pm: the Carmichaels are eating hot-dogs in their backyard.”

2. It’s a running joke in my family that I never finish a drink. There’s always a tiny bit left in the bottom of the glass, but they’ve given up trying to change me.

3. I don’t cry over sappy things, but I do cry over beautiful things.

4. I birdwatch.

5. I had a student job at a provincial park that occasionally necessitated me getting a large-ish snake out of its terrarium and showing it around to kids. Its name was Billy, and it would slither up my arms and around my neck.

6. I was desperate for a horse as a kid. When I was about 11, my best friend called to say her parents were buying her one. I hung up on her, burst into tears and didn’t speak to her for days.

7. I insert my dog’s name into popular songs and sing them to him.

8. I can only sleep in a bed – no couch- or car-sleeping for me.

9. People always think I’m younger than I am. Not long ago I was looking at furniture and sat down in a chair that was way too big for me. The saleswoman said, “don’t worry, sweetie – you’ll grow!”

10. When I was in Rome, I went to the house where Keats died. I waited until everybody was out of the bedroom, reached past the “Don’t Touch” sign and put my hand on his pillow. I don’t think he’d have minded.

Now, to pass it on again, I get to nominate five other bloggers:

1. Sara at The Single Gal’s Guide to Rheumatoid Arthritis.

2. Cathy at The Life and Adventures of Cateepoo.

3. Megan at Sticks and Stones.

4. Britta at Chronically Young.

5. Robin at The Truth About JRA.

Over to you, ladies. I'm excited to read your ten things!

Advice, please!

I need some input from you smart people.

I'm continuing to feel good, but my appetite is most definitely not returning. If anything, it's diminished even more. What can I eat, and how can I force myself to eat it, when I'm beyond queasy? Yesterday, I had:

Half a piece of toast with a couple of avocado slices
A few bites of spinach salad
6 chicken nuggets
A glass of milk, some gingerale and some water

That's barely one meal. I ate an orange this morning and a cup of tea, and now I'm determined to pick through a cafeteria salad plate over the course of the afternoon. Eating feels awful. I'm not interested in anything, and when I do eat, I feel sick (and have actually gotten sick a couple of times). I'll be seeing my parents on the weekend, and they always watch me like a hawk to make sure I eat enough. So, I want to fix this.

I know this can't go on forever, and that eventually things will right themselves and I'll eat a real meal. In the meantime, though, I need to eat enough to get through the day.

What can I do? Any foolproof anti-nausea tricks or favourite foods when you're feeling ill?

Better

Bit by bit, I'm evening out.

I've had two weeks of Naproxen at 1000mg/day, and two 1cc injections of methotrexate. Walking is easier, getting out of bed is easier, and I've got a little more energy. I haven't much of an appetite, but that will come back.

I bought insulin syringes for the MTX, but they're so thin and fiddly. When I drew the medication and pulled the plunger all the way out, they were too long for my hands. My first two injections were thus painless but more than a little messy and fumbly. I bought some fatter syringes this week. And yes, I'm being careful with alcohol.

I'm also switching back to the old-fashioned mix-your-own Enbrel, so that I can inject twice a week. My rheumatologist said it's worth a try. (And I'm all for it, since it means no more of that preservative.)

Work is nutty, and I've only been sleeping about five hours a night, so in all I'm pretty happy with the way I'm feeling. Just in time for spring.

Talking about pain

The Globe and Mail this week noted a recent study that found talking about pain can actually heighten our experience of it:

“Far from being soothing,” Richard Alleyne reports in The Daily Telegraph, “words and counselling can actually increase the intensity of physical pain, a study finds. Warnings such as ‘this may hurt a bit’ or ‘you might feel a little pain,’ can be counterproductive and actually compound feelings of discomfort, it is believed. The study discovered that certain pain-associated words such as ‘tormenting’ or ‘gruelling’ stimulate the pain area of the brain – even when no pain is actually administered.

I usually find the opposite to be true. When I'm warned by a nurse or doctor that something will be unpleasant, it usually ends up being not quite as bad as I expected. When I haven't been warned in advance, on the other hand, I think the surprise can sometimes make pain or discomfort seem worse. Of course, no doctor has ever told me that anything would be "tormenting" or "gruelling." A nice honest "you're going to feel pretty gross for a few minutes" (to quote my EP) is extremely helpful.

What do you think? Do you want fair warning, or does that make it worse?

Disclosure, (not quite) one year later

When Sara asked for submissions on the subject of disclosure to this week's "Patients for a Moment," I  thought back to a post I wrote not long after I started blogging. I've always been uncomfortable talking about illness, and in it I tried to figure out why. I think I've learned a fair bit since then, so I've revised it here with the addition of some of that (very) slowly acquired knowledge.

My goal is always to strike a balance between letting people know that what I have is serious enough to affect my life, and ensuring they understand that I'm not crushed by it. But after 24 years with RA, I'm still not great at disclosing illness. I usually end up fumbling somewhat awkwardly through that initial conversation, very often insisting that, yes-I-have-RA/HCM-but-no-really-I'm-absolutely-one-hundred-percent-fine! Don't worry about me! Sure, I'll help you lift those boxes!

Whatever the situation, the realization that I'm going to have to tell somebody about some or all of my "health stuff" always looses a few butterflies into my belly. I've realized lately, though, that the people I'm disclosing to now are not the people I was disclosing to in grade school. They're grownups, and while I still get silly responses now and again, I'm no longer met with the kind of taunting I sometimes experienced as a child. Slowly but surely, I think I've begun to feel my way to a somewhat less bumpy disclosure experience.

Here are two things that make it easier:

Control. That means not waiting until I'm on the third hole, golf club in hand, and realizing there's no way I'll finish the next fifteen. (I totally had to look up how many holes are on a golf course, by the way.) It means I need to decide who to tell and tell them on my own terms, not when circumstances force me to.

Openness. I'll take curiosity over awkward silence any day. I can let people know explicitly that they can ask questions, or I can just show them I'm okay with talking about illness.

Sometimes I think I don't give people enough credit. It's true that we put up with frustrating misperceptions and inconsiderate - or sometimes just plain rude - treatment. But if I didn't have RA, would I know anything about it? Would I know the just-right thing to say to someone who had it? Probably not.

I think I've said before that it's unrealistic to expect people to know exactly what you mean when you tell them you have RA, or HCM, or any of the other reams of diseases out there. I do, however, think it's possible - and important - to make the open discussion of illness more socially acceptable. We're part of that.

If we can show people we're not uncomfortable discussing our needs and limitations, we won't just be doing ourselves a favour.

Willpower

This post is going to make it sound like I'm a heavy drinker, which I am not. However, working in PR and media seems to involve a lot of going out. Lots of lunches, dinners, and cocktails, sometimes with clients who drink like fish and expect me to, as well. It's fun, but it means I'm exposed to more alcohol than I've ever been in my life.

Don't you want to drink this?

I won't lie. I love a glass of wine with dinner or a lovely cold gin and tonic. But as we all know, drinking and methotrexate do not a healthy combination make. My rheumatologist has always told me that one to three drinks per week is safe, but starting today, I'm on more methotrexate than I ever have been. I need to be more careful.

Today at lunch, when everybody else ordered beers and cocktails, I ordered a Diet Coke (I know Doctor Grumpy would approve). In half an hour I have a drinks meeting (see what I mean?!) and I am planning to once again order something non-alcoholic. Even though it's warm and sunny out and Jo, who is just as enamoured of G&Ts as I am, will be sitting next to me sipping one.

(First MTX injection tonight. If there are any disasters, or if anything otherwise notable occurs, I shall report back.)