Deep... breaths...

The topic of "helpful advice" comes up pretty frequently in patient blogs, especially with diseases as misunderstood as RA.

You know, the coworker who tells you his arm really hurt once, too, and all he needed was a tylenol. Or, my personal nemesis, the anti-medication crusader who so kindly informs you you're doing it wrong and you're giving big pharma everything they want. As if we really love swallowing pills and sticking needles in our bellies and throwing thousands of dollars at huge corporations. As if we haven't wished we didn't need these drugs, or tried to find other solutions. As if we don't weigh these choices with incredible care and caution.

I have an aunt who likes to give advice. To everyone. She stayed for a few days with my parents last summer and tried to get my Mom to rearrange the living room furniture so she could see the TV better, if that gives you any indication. Of course we love her, but she can be difficult.

So last night, during break time at choir rehearsal, I took a look at my email and saw one from her entitled "Arthritis Information." I took a deep breath; I knew what it would be and I was already fuming. And yes, it was a link to an "article" on how horrible drugs are and how rheumatoid arthritis is actually caused by food allergies. And what should I be doing? Not taking drugs, certainly, but using hot and cold compresses (!), taking evening primrose oil, and "reducing stress". (Interestingly, the article went on and on about how NSAIDs don't actually alter the course of the disease - no mention of biologics, though, of course.)

I mean, I guess she does have 26 years' experience of living with the disea -- oh no, wait, that's me I'm thinking of.

But I took a breath, and emailed back, "Thanks, auntie X! Very interesting." And I'll just keep doing what I've been doing: treating my RA in a way that works with my body, that my medical team and I are comfortable with, and that allows me to do things like, you know, walk and put clothes on and stuff. 'Cause it's nice to be able to do that.

Whining

Today I'm just going to have a little whine, because everything hurts.

Mostly it's my hips and feet, but they make everything else hurt, too, I suppose because I'm not walking or sitting normally. I can hardly concentrate enough to read a book, it hurts so much. I've got a cold, so that doesn't help, I suppose. And it's frigid and grey and miserable outside.

It's Sunday - I should be in a cafe or walking in the park, but all I want to do is curl up in a ball (this would be a really great time for the imaginary invention I came up with when I was little - a person-sized box full of warm water, with a seat in it, that you could completely submerge yourself in, in your living room, with just your head poking out - pretty cool, no?). 

RA really sucks, you know?

Daydreaming

Lately I've been itching to have an adventure.

Since becoming good friends with a couple who lived there for ten years, I've been daydreaming about Japan: stunning gardens, peaceful temples, amazing food and fascinating history. Here's where I'd like to go:

This moss garden at the Saiho-ji Temple. How gorgeous and peaceful does that look?

This bamboo forest in Kyoto. I'd love to walk down those paths with walls of bamboo on either side. I'm sure it's full of people a lot of the time, but in my imagination it would be totally silent.

And I'd love to wander through the Tokyo National Museum and explore its archaeological treasures and huge art collection.

(Of course, the weather would be sunny and gorgeous, too.)

If you could take a trip anywhere in the world right now, where would you go? 

The #1 most annoying thing about arthritic hips is...

Not being able to jump up and run to the bathroom.

A lot of my classes run for 2 or 3 hours with breaks every hour. I never used to think twice about hopping up and just popping down the hall to the washroom. Now I sit there wondering:

If I get out of my seat now, how long will it take until I can straighten my hips and stand upright without holding onto something for support?

Is everybody going to see me waddling around like a demented penguin?

Will I be able to walk quickly enough to get back before class starts up again?

Then I either decide that yes, dammit, I WILL go to the bathroom, and then I get up and pretend to fuss around with something in my backpack until I'm reasonably sure I can stand straight and move without my right leg giving out. Or, I just decide it's not going to happen this time, and I spend the rest of class really regretting the enormous mug of tea I polished off in the first half hour.

Liebster Blog Award

I was very pleasantly surprised to receive the Liebster Blog Award from the lovely and inspiring Mariah at From This Point. Forward (she's having a baby! And she got through law school while facing RA, which gives me hope when I feel like curling up in bed and never coming out). I always enjoy these - it's such a fun way to get to know other bloggers and to connect with more people.

So, on to the award. Here's what you do:

1. Thank the person who gave you the award.
2. Link back to the Blogger (or Bloggers) who awarded you.
3. Answer the following questions, down below.  
4. Pass the award out and recognize other Bloggers letting them know that you love them.

Here are the questions:

Favorite color: Green, in any shade but lime.

Favorite animal: Dogs - I adore them. I always embarrass myself by asking strangers if I can pet their dogs (or, in one case, hug them... I think the owner thought I was nuts, but he did let me do it).

Favorite number: 4.

Favorite drink: I love wine and I also have a guilty attachment to anything carbonated (though I've switched successfully from pop to carbonated water), but if I had to pick one I would have to say tea. I don't know what I'd do without it.

Facebook or Twitter? Facebook. If I signed up to Twitter, I can see myself tweeting once and then forgetting all about it. It seems too involved for me.

Passion? Music! I love many things, but playing, singing or listening to music is one of the only activities that I can become completely immersed in. I'm currently in a choir and also trying to re-learn the piano.

Getting or giving presents? There's nothing better than finding a really wonderful and surprising gift, and watching someone you love open it.

Favorite day: Sunday (unless I've got a paper due on Monday, of course!). I love quiet days taken up with cooking, reading, hiking and good tv.

Favorite flower: Forget-me-nots. They're so tiny and perfect, and such a lovely blue. I also find orchids really fascinating!

So now for the tagging! I'll just do what Mariah did and tag three wonderful bloggers:


Cathy at The Life and Adventures of Cateepoo. I am always inspired by Cathy's determined and optimistic approach to RA, and by her commitment to living in a way that respects her body, the environment and the people around her. She's also got a really cute dog.


Wren at RheumaBlog is a truly wonderful writer. Her stories - for that is what they feel like, not just posts - cut to the core of what it's like to live with RA, but she also reminds us that there is still much beauty, and many good things, in the world if we look.

Britta at Chronically Young blogs about her busy life with chronic lyme disease, school, work, and so many other things in between.



So there you are. A few things you might not have known about me, and a few of my favourite blogs. Enjoy!

I've got 1.5 hours of Latin to memorize

Sometimes it's hard not to think about illness all the time. Lately I feel like I've been spending an awful lot of energy trying to keep up with symptoms and appointments (hospital again tomorrow - sigh), and nobody likes to feel like that's all they do. So in that spirit, I thought I'd write a few posts on some of the other important things in my life; things that have nothing to do with RA or my heart.

I decided to get involved with a more serious choir this year, and I went to my first rehearsal on Monday night. The choir has 110 voices and its own orchestra, and a really brilliant but no-nonsense director. It was all very new to me - I've only sung in small choirs before, and never with a full orchestra accompanying. It was great fun, but also a little scary. I had to stay completely focused or I'd have mucked something up, and the director always knows when you muck something up. (He doesn't single anyone out by name, but he does shout things like, "I hear one guy singing an A flat!" and everybody knows who the one guy is.)

We're performing two requiem masses on Good Friday - by Fauré and by Saint-Seans - in the main concert hall in my city. Here's a small, really lovely bit of the Fauré Requiem:

Isn't it gorgeous? 

I've said this before, but one of the reasons I love singing so much is that it's a physical activity I can actually do. RA makes zero difference to my ability to sing, and this choir in particular seems to attest to that. I saw a number of singers with disabilities, all thoroughly enjoying themselves and able to participate at exactly the same level as everyone else. I also love that it requires all of my concentration, which means that even if my hips hurt, I can't stop to think about them. In a way it's like meditation, demanding that I remain fully in the moment. That's hard to do most of the time, but so much less difficult when you feel there are others depending on you not to slip up. 

Oh, how exciting. I think rehearsals are going to be the highlight of my week!

My new gadget

I had a present in the mail the other day.

It's called a CareLink Monitor, and it's from Medtronic, the people who made my defibrillator. Every night while I'm sleeping, it reads my device and transmits the information to the hospital. If anything is unusual, it alerts the nurses in the ICD Clinic and they can get in touch with me.

You plug it into your phone line, then place the little round wand thing over your heart for a few seconds so that it can read all of the personal information on your device. Then it sends that information to the hospital, and ta-da!, you now have a personalized monitor that keeps track of everything your heart device does.

Pretty cool technology, although I have to admit I am not one hundred per cent happy about it. In fact, I've said "no thanks" to it repeatedly. It's another thing with more plugs and wires (it has lots of wires) to fit into my little apartment, and it's also a constant reminder of my defibrillator. When I'm feeling fine heart-wise (which is the vast majority of the time), it's still sitting there looking at me with its little green lights.

That said, my nurse managed to convince me by telling me it would have caught the problem with my leads this summer before the device shocked me. I'd still have needed surgery, but I could have bypassed the making-a-scene-in-public bit, and that would have been very nice. So now I have a new device to keep an eye on the other new device and make sure it doesn't develop any problems. (Soon I'll be getting a CareLink Monitor Monitor. And a CareLink Monitor Monitor Monitor.)

All complaining aside, it is reassuring (and pretty amazing) to know that any potential problems with my ICD should be caught before they manifest themselves in unnecessary shocks.