Charity Tillemann-Dick TED Talk

A really inspiring TED talk by a soprano who survived heart failure and a double lung transplant to sing again.

 She talks about the importance of treating the whole patient - of recognizing that giving patients the ability to fulfill goals and to be passionate about life is just as important, if not more so, than simply treating physical symptoms. My favourite line: "We need to stop letting disease divorce us from our dreams."

Love.

My new workout

New for a few reasons.

First, I had to stop going to aquafit because of my stupid right hip. It was doing this really quite disgusting crunching thing through most of the class, crunch crunch crunch, which was both painful and, well, icky. I kept at it for a while, but it got to the point where I was cringing and grimacing through the whole thing, and I knew it was time for a change. I was sad to leave it, because I think for a long time it really did make a difference.

I also decided to change up my workout because I didn't feel I was getting any stronger. The aquafit was helping me stay flexible, but I don't think it was building muscle, and that's what I need.

So I have been slowly working up to a combined routine of elliptical and weights.

I started with ten minutes on the elliptical, three times a week, to see what it would do to my hips. And strangely, it did nothing. No crunching (I think they don't go high enough) and no increase in pain. I also bought two five-pound weights and started using those for ten minutes, also three times a week.

Now I'm up to twenty minutes on the elliptical (I want to get to thirty) and  twenty minutes with weights, and I love it. It's a lot more challenging that the aquafit was, but gentler on my hip, and I think building muscle will be good for my joints. I feel stronger after about a month, and really excited to keep going.

A friend who has been dealing with some serious stomach problems for a few years now recently asked how I deal with my lack of control over my body. She's been missing a lot of work and finds it hard to accept not knowing how sick she'll be from day to day. The only answer I could give her was that, even though I don't know what my body will do from one day to the next, I do know that, whatever it is, I'll be able to adapt to it. And if I can't do the things I love in the way I used to do them, I'll just find new ways and new things to love. Not easy, of course, but necessary and, over time, almost instinctive.

Now on to thirty minutes!

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?