Wednesday, March 27, 2013

Evidence vs. Experience



I have what can best be described as a crapload of allergies. Some of them have been around since I was a kid — if I ate too many grapes or apples, I’d get hives — but others are new additions. First came kiwi, then 15 years ago certain kinds of nuts arrived, taking with them all other kinds of nuts due to the risk of cross-contamination (I miss nuts…). Then came Enbrel, which made me allergic to what seemed like the entire world. Since I started Humira, I’ve gradually added back foods, but still have a number of interesting limitations, what between cross allergies — did you know that if you're allergic to kiwi, you probably have a cross allergy to melon? I found out the hard way — aggravated histamine levels thanks to Humira and my body’s just plain persnicketyness.

Living with a crapload of allergies is a pain in the arse, particularly nut allergies. Because of the cross contamination issue, having a nut allergy means being pretty paranoid about other kinds of foods. You can't buy bread in a bakery, because the baking sheet upon which the bread has reposed may also have been used to bake something containing nuts. You can’t buy chocolate bars without nuts because they’re usually made in a factory that also makes chocolate bars with nuts, so there might be cross-contamination. Same goes for cookies, ice cream and anything else you can think of. Thankfully, the last couple of years, I've seen more products being made in nutfree environments and the labeling laws in Ontario do help tremendously. But I still miss chocolate. Good chocolate. NestlĂ© makes four different kinds of chocolate that's nutfree, but it's made for children. It's not really good chocolate.

But I digress. Lately I've been in the mood to expand my food options, but thought it best to verify my own assessments of allergies. I'd seen an allergist and had some blood tests that came up negative, but let's make sure. This meant a return visit to said allergist for a skin test to confirm — or perchance, I hoped, to deny — the long list of what I shouldn’t eat.

A very nice woman from an Eastern European country was entrusted with performing the skin test. This is that test where they smear concentrated allergen on a double row of small needles and then press them hard into the underside of your lower arm, followed by a few notations in pen to differentiate them from each other. I winced my way through the right arm, but as she prepared the contraption for a second imprint on my left arm, I started thinking about Eastern Europeans and their reputation for brusqueness. Somehow, she didn't seem nearly apologetic enough.

And then I went into the waiting room to join the line of other victims patients sitting with their bare arms outstretched, afraid to move in case it might mess up the test. Deeply fascinated, I kept an eagle eye on each tiny hole in my arm with its accompanying marker in blue pen, waiting for red bumps to appear.

None did. I looked closer. Nothing. Cooked some more, then looked again. Still nothing.

And this is when I started fantasizing. Because I knew that several perforations on my left arm represented nut proteins and there clearly was no reaction, so maybe I wasn't allergic after all? Maybe it had been some fluke reaction? Maybe I could start eating nuts again?! And this was the point where visions of not sugarplums, but two particular items after which I have been lusting for years started dancing in my head. I imagined stopping by the grocery store on my way home to buy one of those wonderful deep, dark Lindt chocolate bars that are all over the place now, but which I have never tasted (with the exception of a few experiences, I haven't had really good dark chocolate in decades). Right after that, I’d swing by the bakery on the bottom level of the Market and get a freshly baked croissant and carry it home, still warm in the bag. I'd eat the croissant and chocolate together.

I love croissants. So much so that back in the 1980s when we visited Paris for five days, I lived on cappuccino and croissants. Once, we stood outside a bakery not too far from the Eiffel Tower for 25 minutes waiting for them to finish baking. It was a really good vacation.

But I digress. My allergist came out, took a look at my arms and then sent me back in for another round to doublecheck the nuts and kiwi. For the latter, we had to go to the cafeteria, get a fresh kiwi and the love Eastern European woman mashed some of it up and put the juice on a couple of the holes in my skin. I haven't been that close to a kiwi in 15 years. All I remember is being nervous and that it smelled really green. The result? Again, nothing.

The chocolate and croissant were so close I could taste them.

And then I went to have a chat with my allergist, who told me that the only tests that came up positive were for dust and dust mites. So, I asked, with a significant amount of excitement in my voice, did that mean…? 

No, it did not. As my chocolate bar and croissants fluttered away with the inside me yelling noooooooooooooo, I listened to my doctor tell me that there are studies showing that you can show negative in both blood and skin tests and still have an anaphylactic allergy. In particular, a large French study of people with sesame allergies demonstrated this conclusively (at which point, I wondered whether they had deliberately induced anaphylactic reactions and then decided I didn't want to know). He told me to trust my experience of "interesting" reactions to a crapload of different foods, snacks and other substances. And then I went home. I did not stop by the grocery store for a chocolate bar and I did not stop by the bakery on the bottom level in the Market for a freshly baked croissant.

As I was nearing home, I considered the irony of a doctor trusting my experience, rather than the evidence, the one time I didn't want that to happen.
   

Tuesday, March 26, 2013

Blog Tour: Getting Closer to Myself

The latest stop on the Your Life with Rheumatoid Arthritis Blog Tour is Getting Closer to Myself, Leslie Rott's blog about living with the double whammy of RA and lupus. Leslie is a graduate student in sociology and asked some great questions. I thoroughly enjoyed the opportunity to delve deeper into the topic.

You can read our Q&A on Leslie's blog here.

  

Friday, March 22, 2013

Better Than Chewing!

I blame Laurie for this.

A week ago, she wrote about incorporating more fruits and vegetables in her diet by making smoothies. Kale smoothies, in particular. My naturopath has been trying to get me into smoothies for while (a long while), but no luck so far. Then I read Laurie's post and got all excited about her mentioning the NutriBullet. Because the Bullet has intrigued me for some time (and I know some of you out there are now snickering for reasons completely unrelated to the topic of this post). I'm talking about the MagicBullet. The smoothie making blender thing. Anyway! I've been tempted to buy it for a while, but wasn't sure how well it would work and never quite got around to it.

That happens a lot around here.

Enter the NutriBullet. It looked sturdier than the MagicBullet and is specifically designed to have a stronger motor that can get at the fibers in things like kale. Which is good for you. It has calcium, something that I'm more conscious of needing as I grow older. So I decided that I would get one. Eventually. Which, as I may have mentioned, can take a while in my world. 

Normally, I don't get flyers — I put a sticker in my mailbox saying no thanks because they drive me crazy. Apparently my usual postal carrier is on vacation and his replacement unfamiliar with words, because I've been getting flyers for the past week or so. One of which was for Bed, Bath and Beyond, which listed the NutriBullet for $99. $20 less than buying it off the website and no shipping and handling if I got The Boy to pick it up. It moved higher up on the "likely to happen soon-ish" list.

And then The Boy's sister called me Friday evening, saying she was going to Canadian Tire and did I want anything? I looked up the NutriBullet on their website and lo and behold, it was on sale for $79.99.

Clearly, it was fate.

 

This weekend, we played with my new toy. Sure, some people might think it's a small appliance, but it's so much fun to use that I qualify it as a toy. The manufacturer has had enough of a sense of humor to write this on the side of the box, so I think they're probably in on the joke.

 

We made a couple of different smoothies, both starting with baby kale


We added half an apple to the first one, but that made me sneeze (I'm somewhat allergic to apples and haven't eaten one for a long time, so it was too much of a shock to my system). Smoothie #2's replacement was half an orange

 

I found some Ontario strawberries in the freezer

 

added some blackberries (Lucy was very intrigued at the production)

 

Then we added water to the MAX line and screwed on the appropriate blade

 

Popped it on the base, twisted, and off it went


After a total of three minutes to get the ingredients ready to go into the cup, less than 30 seconds of doing terrible things to fruits and vegetables, we had a smoothie

  

It looks awful, but tastes really good! Sort of like sushi. Well, it doesn't taste like sushi, but feels like it. really clean and like you're doing something good for your body. 

Definitely a good buy that's going to help me get healthier. And it's fun, too.

  



Thursday, March 21, 2013

Happy 40th, Janne!

Today, my little sister turns 40 years old.

It seems impossible. I mean, she looked like this just the other day


My mother has a theory. For as long as I can remember, she's told us that women come into their own at 40.That this is the age where you stop being so worried about what other people think and rely on your own judgement. You get strong, you get opinionated - okay, in the case of the women in my family, more opinionated - and you figure out who you are and what you want in life. And then you go get it.

My mother is always right. Every woman I know has made a shift around the age of 40 and my darling sister is no different. Janne has always been the bestest to me. Although there's 10 years between us, we've always managed to bridge the gap and remain not just sisters, but friends, as well. Every day, I count myself lucky that she's my sister. And every day, she is more beautiful, more self-assured, smarter, stronger, and a woman to be reckoned with.

Happy 40th, Janne. Welcome to the magic age!


   


  

Monday, March 18, 2013

Real RA: The Great Pretender



People with RA lie all the time.

How are you? 
Fine. You?

How’s the pain today?
Not bad.

Are you worried?
Not at all. I’m sure everything will be OK. 

It’s a necessity of life with this damn disease. If you're honest, not only will your friends and family start avoiding you, but you'll start to bore yourself, too. There's only so much unrelenting crap anyone can deal with before it gets old and miserable and you want to run screaming for the hills. But when you live inside the crap, there's no way to run.

And so you lie.

You lie to the people you love most because seeing the worry in their eyes makes you want to protect them. You lie to acquaintances because it takes a certain level of intimacy to talk about the true impact of your RA on your life. You lie to the clerk at the grocery store because she doesn't really want to know how you are while cashing out your orange juice, crackers and toilet paper. You lie to your doctor, telling them only the most urgent issues because otherwise you'd be there all day. And you lie to yourself, because if you don't, if you give it half a chance, the RA will take over and consume your life.

Sometimes, living with RA is like being a duck. You look cool and calm, but underneath you're paddling like mad. To achieve that cool and calm, you have to play fast and loose with the truth. The truth is hard and ugly and painful and cannot be allowed to gain purchase. The truth will slide over you, slowly covering all of you like an oil slick until it weighs you down and you cannot swim anymore.

That's what it feels like. The harder it is, the more important it can feel to maintain that duck-like serenity. Everything is out of control, so you control what you can. You hold on tight, pretending to be better than you are. You fear that if you let go, you might disintegrate.

But will you?

I spent my entire life pretending I was better than I was. More capable, with more ability, less pain and during the rough times, coping far better than I actually was. And then I had the Big Flare, got Enbrel, got better and made myself a promise. I decided to become the person I'd always wanted to be and that wasn't just about becoming a writer. It was also to not pretend anymore, to be emotionally honest with myself and with others and forcing myself to do some of that work in public, here on this blog. It hasn't been easy, but with practice I have (mostly) let go of the mask of being fine when I'm not.

In the process, I discovered that pretending takes an unbelievable amount of energy. That by being honest about my limits and how I am, I've actually ended up having more energy that I need for things like getting through the day and doing my job. Am I always honest? No. I don't tell the clerk in the grocery store exactly how I am doing today because I’m aware that there are social mores governing self-expression. I don't tell my doctor every little thing because both she and I have other things to do than spending the day rooting around in the minutia of my health. Most of the time, though, I tell it like it is.

And then there are the times where I become aware that the lesson isn't learned quite yet.

Two weeks ago, I noticed an odd swelling between my ankle bone and the Achilles tendon on my right foot. I have no idea how long it's been there — it didn’t hurt. It also felt as if that foot was turned in a bit more than before and the toes were slightly more bent. I told three people before I got a grip on the freak-out and one of them was my rheumatologist's secretary when I called to make an appointment.

And then I told no one else, because I feared that if I did, I would disintegrate.

I saw my doctor last week and the swelling turns out to be tendinitis — perhaps related to what must've been a flare, perhaps not. Bottom line is that I've upped my Humira and realized it’s time to pay more attention to being emotionally honest.
   

Saturday, March 16, 2013

Blog Tour: MyLungsMyLife

Jenni is 16 years old, lives in the UK and has the best Twitter handle I've seen in a while: @pinger_genguin. Brilliant, right? She raises awareness about chronic and invisible illnesses on her blog MyLungsMyLife. Earlier this week, I wrote a guest post for her about juvenile arthritis

Thanks so much for hosting me, Jenni!
 

Friday, March 15, 2013

Juvenile Arthritis Awareness with Dr. Oz

Something pretty exciting has happened....

"RAHealthCentral is thrilled to announce a new positive way of raising awareness about juvenile arthritis!

We recently had the opportunity to collaborate with The Dr. Oz Show to bring information about juvenile arthritis to his viewers, which number in the millions. An article written by yours truly has been posted on The Dr. Oz Show website! It covers information about juvenile arthritis and what it means for the children and families affected by this disease."

You can read the rest here.

We're also hoping to get the community involved in raising awareness about JA. If you're the parent of a child with juvenile arthritis or have juvenile arthritis yourself, we ask that you hop on over to the Dr. Oz website and tell your story in the comment section on my article. Personally, I hope that by many people posting compelling stories in a positive way, we can demonstrate to the show that there's a good reason to do an episode on JA.

Please help spread the word.

Wednesday, March 13, 2013

Blog Tour: CreakyJoints Invited Blog

A couple of weeks ago, the lovely people at CreakyJoints asked me to write an invited blog for them. They wanted to hear more about the process of writing the book. I was very happy to oblige. The post is about three factors that are important both to writing a book and living with RA. And my secret friendship with Laura Hillenbrand.

You can read the post here.

Monday, March 11, 2013

Birds of a Feather

I took the weekend off and it was just lovely. Not just because I wasn't working, but because the weather decided to play Spring. I meandered off with my camera, intending to take photos of construction sites and I did that, too. But somehow I ended up down by the water again. 

I know. Big surprise.

This time, I wandered pretty far afield, further than I've gone in a while. Before I knew it, I found myself at the foot of Yonge Street, the longest street in the world (although something about the Wikipedia entry makes me think that another country has snagged the honours). There were ducks. Interesting ducks, quite different from the regular quackers . Not that I don't love them, too, but as I may have mentioned before, I'm sort of getting into this birdwatching thing.

Everybody were just hanging out, including the guy in a kayak


The cast of characters were several longtailed ducks


and another one that I think was a female Merganser, although I'm not sure if she was Red-breasted or Common, although I'm leaning towards the former, because of the crest on her head. As an aside, I don't think it's nice to call such a beautiful bird common, but I wasn't in charge of naming it.



The water was really quiet, rippling around the birds and depending on where I was in relation to the sun, the colours changed



Regardless of the particulars, both the longtailed duck and the Merganser are diving birds and I spent some time watching them hunt for food

They'd swim around and when they got going, they moved at a fair clip


and every now and again, they'd stick their head in the water to (I assume) look for fish


 

When they saw something (again, I assume) they'd get ready and dive down and stay for a long time, coming up pretty far from where they went down


 

I have no idea what this guy was doing


 

I had a great time watching them


  


Monday, March 04, 2013

Blog Tour: Living with Rheumatoid Arthritis

I was thrilled to stop at Andrew Lumpe's Living with Rheumatoid Arthritis to have a chat about the book, writing with RA and a disability and a mutual geek out about the state of research and the digital world. Andrew also did a lovely review of Your Life with Rheumatoid Arthritis.

You can read his post here.

Friday, March 01, 2013

Fishing for Cats

I'm always on the lookout for cool toys for Lucy. Partly because she spoiled and partly because she's pudgy. Toys will make her move. At least theoretically – it's been a while since there's been one she's excited about and to be honest, she'd become a bit of a lump.

And then I discovered Neko Flies.

The beginner kit is a very sturdy stick and a "bug" on a – again very sturdy — string. It attaches with a lobster clasp to a ring on the stick and you can get different bugs separately for variety. I bought the Kattipede. The Boy was with me and asked if I were sure that this was a toy worth $17. I said it was worth a shot. And boy, has it proven to be worth $17!

Lucy has excellent hunting instincts and has been known to hunt, kill and eat an errant fly within a few minutes. This toy activates her hunting instinct, her desire to run and her curiosity. She loves it. To the point that she'll sit expectantly next to my hallway dresser where the magic toy lives, asking to play. A lot. I'm getting some exercise from this, too.

The first time she saw the Kattipede, she was a little weirded out (all photos by The Boy)


Not quite sure if she should touch it


And then the chasing started


She very much likes incorporating the box when chasing the bug


The Kattipede has a lot of very twitchy legs that are endlessly fascinating


 

Lucy is very fond of picking up the bug and carrying it to her mat, where it gets chewed and disemboweled.


 

it's been a couple of months since I bought this toy. Not only is she still as fascinated as she was at the beginning, but the bug shows no sign of the abuse it gets. It's fantastic quality.

Best new toy ever!