Thursday, June 28, 2012

Closing the Mortality Gap: RA and Heart Disease

   
This week on HealthCentral, I'm looking at good news about Biologics and the systemic impact of RA:

"It’s called the mortality gap. And none of us like to think about it.

The average life expectancy of people with RA is 10 years less than the general population. RA is a systemic disease that affects not just our joints, but also our internal organs. The mortality gap exists because the systemic inflammation of RA leads to a higher incidence of heart attack and stroke.

But there's good news. A few weeks ago at the 2012 meeting of the European League Against Rheumatism (EULAR) in Berlin, researchers presented a paper showing a dramatic reduction in heart attacks in people taking anti-TNF medication, such as Enbrel, Humira and Remicade."

The rest of the post is here.
   

Wednesday, June 27, 2012

Purple & Green

  
  
(someone please tell me what kind of flowers these are - lupins?)

Monday, June 25, 2012

The Sanest Thing I Ever Did

   
Sometimes, there’s nothing for it. Sometimes, you try and try and try and then you try some more, but you can’t get past where you are. Sometimes, the struggle takes on a life of its own, colouring everything else around you, making it impossible to have a moment that is free and pure of worry. Sometimes, it turns you into an modern-day Sisyphus, pushing the rock up the hill over and over, only to have it roll down again. Sometimes, you get so lost in the fight that you lose perspective, instead blindly moving through a morass of futility.

Sometimes, you have to surrender to reality.

Six months ago, I was one of the spokespeople for The Health Council of Canada’s report about people who live with chronic illness and their challenges within the healthcare system. My story focused on the cost of chronic illness – the money. Because having a chronic illness is expensive. Add a disability on top of that and it becomes major money.

We don't talk about the money. It's not polite to talk about money and it's certainly not polite to talk about having money trouble. And I struggled a fair bit before I decided to be more open about it. On both the internet and television, no less. As part of the spokesperson experience, I was interviewed by Global News and at the end of that interview when the reporter asked me how I managed, I made a smartass comment about being very grateful to Visa for all their help.

The problem with Visa is that they want their money back. The problem with having a chronic illness and a disability is that the expenses are never-ending and substantial. In the past nine years, I have spent somewhere in the neighbourhood of $65,000 on the medications and equipment (wheelchair, automatic door opener, etc) that I need to live. Even with having a part-time job for the past four years, that's a lot more money going out than coming in.

Three years ago, I looked into declaring bankruptcy. Ultimately, I decided against it because I couldn't afford to not have my credit cards. Credit was the only reason I could afford my meds, random wheelchair repairs and the like. I took a look at my debt and I took a look at the fact that I had a job and was convinced I could deal with it, sure I could get ahead somehow.

I was completely deluded. I couldn't deal with it, I couldn't get ahead of it. As the medication costs continued, as my grocery bill grew because my body became less cooperative in terms of what food it would tolerate and as my wheelchair continued to be a lemon that needs a ridiculous amount of repairs, the costs kept rising and so did my debt load.

For a long time now, I have become nauseated every time I pay my bills. For long time, I have managed to only pay the minimum payment on my debt every month, essentially just the interest. And for a long time, I have run out of money around the 18th of every month and needed to use credit to buy groceries.

This is not a recipe for paying off your debt. All this does is increase it, gradually, inexorably, nauseatingly.

There is a saying attributed to a variety of people (including Freud and Einstein) that the definition of insanity is doing the same thing over and over again and expecting a different result. Recently, I took a long, hard look at my life and realized I needed to face facts: to continue on this road came awfully close to meeting that definition.

And then I wrestled with the shame. Because you're supposed to honour your debt. It's how I've been raised and it's a deeply held value not only within myself, but in our society. How do you get to the point where you can admit to yourself - and others - that you need help?

A couple of years when I first looked into bankruptcy, I talked to a wonderful bankruptcy trustee who did much to take away the feelings of shame. I also have a good friend or two who's going through it and seeing them get back on top of their financial situation, meet their obligations and thrive made it easier to see the purpose of it. But still, it took months to get there. Intellectually, I could see the necessity, but emotionally, I still had trouble.

I tried talking to my creditors about lowering the interest rate so I'd be able to pay off some of the principal every month, instead of just the interest, but they came back with a half of a percentage point. Which would do nothing. And then I finally talked to a trustee and discovered there were options. I could declare bankruptcy or I could do a consumer proposal. In the latter, you set out a budget and based on the numbers, propose to pay off a certain amount of your debt over five years. So I took a realistic look at my budget, crossed my fingers that I would have a job for that time and sent it in.

On Friday, I got the news that my proposal has been accepted.

For the next five years, I will give a certain amount of money to my trustee every month.  And I will be able to afford my groceries not just in the first week of the month, but the last one, too.

And it turns out that there is no shame in it at all. There is only relief and the knowledge that this is the beginning of getting back in control. The start of freedom.
   

Friday, June 22, 2012

Building Bridges for Awareness: Contest Winners & Ideas

   
Remember the Amazing Awareness Contest held on HealthCentral's RA site during the month of May? Today I announce the winners. But not just that - I also collect all the great suggestions 7ut were submitted for raising awareness in one place. Your go-to list for ideas on how to change the world:

"You are all brilliant!

We asked you to enter your ideas about raising awareness of RA for our Amazing Awareness Contest in May. And we were overwhelmed by your creativity and passion. Thanks to you, our community will now have a blueprint for change to consult when looking for suggestions of what they can do to change the way others see our disease. More on those suggestions in a moment. First, I need to announce the winners of the contest."

You can see the winners and the ideas here.
   

Monday, June 18, 2012

The Newsflesh Trilogy

   
I don’t like zombies. In terms of the traditional trifecta of transformative supernaturals, give me vampires or werewolves any day for an interesting story with plenty of potential for goosebumps. Zombies, on the other hand, aren't particularly scary. Primarily just gross. I mean, how truly frightening can it be to have somebody shambling after you, moaning quietly while leaving a trail of extraneous linbs? Creepy, yes. Hide-behind-your-pillows kind of scary? Not really. The only zombie movies I've ever watched and enjoyed are Shaun of the Dead and 28 Days Later. I tried watching The Walking Dead, that critically and popularly acclaimed series, but after two episodes decided that I had too many other options for entertainment that I might actually enjoy.

Which is to say that I don't exactly know how I ended up buying Feed, the first book in the Newsflesh Trilogy by Mira Grant, which is supposedly zombie novel, but nonetheless, there I was. Very shortly thereafter, I bought the second book (Deadline) and then I waited impatiently for the third. Having just finished reading Blackout, I feel compelled to share my impressions.

In the not-too-distant future - in fact, I think it was 2014 - researchers have found a cure for the common cold. There is also work in using a virus to combat cancer. After an unscrupulous journalists puts out a rather questionable story, a small group breaks into a lab and sets the virus free. And creates havoc. Because one virus hitches a ride on the other and before you know it, any mammal over the weight of about a four-year-old as a potential for zombification. Or rather, amplification, because that's what it's called when the virus – now called Kellis-Amberlee - gets triggered. Enter the post-apocalyptic world of the US in the year 2040, which is where the books take place. Blood test devices are everywhere, requiring people to test clean for Kellis-Amberlee before they can into their home, office buildings, hotels, hospitals and busses, as well as undergo random blood tests at intersections and gas stations. It's a very different world, one where no one has a pet much larger than a cat, people are living in abject fear and always on the lookout for zombies. Outbreaks happen all the time, requiring the CDC to swoop in to cleanse in the area (which involves bombs and subsequent massive use of bleach). Everyone's hair is streaked blonde because of frequent anti-contamination procedures (lots of bleach again) and the level of paranoia is quite high.

Shaun and Georgia Mason are the adopted children of the Masons, the first of a new breed of journalists reporting through their blogs. Shaun and Georgia run After The End Times, a news organization that has several departments: the Newsies (reporters), the Irwins (who poke dead things with sticks while recording themselves for the entertainment of the masses) and the Fictionals, who is a name suggests, write fiction and poetry. After The End Times gets the opportunity to be the official bloggers of the Ryman presidential campaign and this is when the story takes off. I'm not going to say any more about the specifics because that might ruin the story.

So, yes. There are zombies, but I wouldn't exactly call these books zombie novels. If, on the other hand, you are fascinated by virology, journalism, politics and enjoy a good conspiracy theory, these are the books for you. Are they perfect? Well… I would've suggested another edit - hearing them read aloud on an audio book makes it clear that the writing occasionally could have a lighter touch. But that's quibbling. The story is good. Really good. It moves along at breakneck speed, surprising you, moving you, infuriating you and often causing you to bite your nails while you wait for someone to test clear or get out of that situation with zombies. I had a blast reading this series.

On the one hand, it's perfect summertime reading because it's an action movie in print. On the other hand, it also makes you think. About politics, about what researchers are up to, about the potential for catastrophe in virology and about how far you would go for your ethics. That last one is important – it’s the overarching theme of the trilogy. Journalistic ethics, political ethics, scientific ethics and the circumstances that test your commitment to the beliefs by which you live and work. There is much food for thought in these books and a lot of fun, too.
   

Wednesday, June 13, 2012

Everyday Life & RA: 10 Resources to Make It Easier

   
This week, I got super practical on HealthCentral:

"For some, it's the jar that might as well have a padlock. For others, it's the childproof cap on a prescription bottle standing between them and relief of pain. Then there is the keyboard that makes your wrists hurt, scissors that cause the base joint in your thumb to be unusable and the list is endless. When you have rheumatoid arthritis, interacting with objects in your home, garden and office can be frustrating and painful. This post will feature products and places that can make your life easier."

You can read the rest here.
   

Monday, June 11, 2012

Amongst the Woofs

  
This weekend was spent immersed in the canine species. It was time for the annual dog festival, known as Woofstock and it is one of the happiest weekend of the year.

Very early on, we were greeted by this matched pair and what better way to set the tone for the festivities been a tough dude with a tiny dog?


On the other end of the continuum, we met this Bull Mastiff that was the undisputed king of slobber


As usual, there were quite a few bulldogs. In other years, I've been entranced by their faces and this was the first time I really noticed the other end. I had no idea they had symmetrical cow licks on their butts! Also? That tail is the cutest


We met a walking pom-pom


and so another small dog - Pekinese cross? - that managed to assume the perfect pose at all times


This one had perfect markings and colourings and I loved the expression


And speaking of perfect colouring, this may have been the most beautiful dog there


There was also a dog costume contest. I have yet to see a dog that seems completely comfortable with getting dressed up, but this one was my choice for the winter


I fell in love with corgis. Especially corgi puppies


Despite my earlier fascination with the rear end of Bulldogs, I veered into falling in love with eyes. Beautiful eyes




And at the end, there was funnel cake. Another kind of beauty

    


Monday, June 04, 2012

Not About RA

   
Well, that was a bit more than a flurry, wasn’t it? I think the last few weeks qualified to officially be named a perfect storm o’ work. And the really quite amazing thing was that I got through words without giving myself an injury - well, not a work-related one, anyway. We shall not speak of the fan that fell on my leg on Saturday.

Although I have been in quite some degree of awe at just how much my body put up with in the past couple of weeks (and last week in particular), I will not speak of it today. Not just because after the Arthritis Awareness Month storm, I think we've all had our fill of anything related to arthritis, RA or awareness for a little while. This is very true, at least on my end, but today is also the first day of my vacation. Well, the first weekday, anyway.

For the next several days, I will not be working. Which isn't quite true, either, because there is that last rewrite to tackle, but I will not be working like a madwoman and that's pretty much the same thing. In amongst the (re)writing, there will be a lot of reading - today, I plan to finish The Rose Garden by Susanna Kearsley, a lovely, gentle and romantic time travel book and right after that, I'm diving into Blackout, the last book in the Newsflesh zombie trilogy by Mira Grant. Y’know… for contrast. In between, I'll be found in front of the TV watching season two of Borgen (there might be a post in there sometime), playing with the cat, catching up with friends and, when the weather cooperates, in the place with this view
 


   

Saturday, June 02, 2012

Patients' Access to Treatments Act/10 Grassroots Advocates

   
The last week of Arthritis Awareness Month had me writing about advocacy in two different spectrums (spectra??).

First, the Patients' Access to Treatments Act.This is an important bipartisan initiative to limit insurance companies from charging more in co-pays for Biologics than for other drugs:

"When you have rheumatoid arthritis, medication can be an essential part of controlling the disease and managing symptoms. This is the moment where those who are insured breathe a deep, relieved breath. At least they won't have to worry about medication cost. Or will they?"

The rest of that post is here.

Also this week, I had the privilege of profiling ten amazing people in the inflammatory arthritis community, talking about what they do to advocate and raise awareness:

"Many people who live with rheumatoid arthritis are engaged in advocacy and raising awareness in one way or another. Many more want to get involved, but have limited energy or don’t know what to do. As part of our celebration of Arthritis Awareness Month, we wanted to profile a number of people who have found various ways, big and small, to spread the word. We hope that these stories might inspire you by showing that there is a range of activities you can do to advocate and raise awareness, depending on your health, energy and time. All of the people profiled do this is a labor of love by donating their time to the cause."

You can read the rest of that post here.

And now: weekend. I hope yours is wonderful.