Friday, February 26, 2016

Photo Friday: Snow Day

We recently had a perfect snowy day. It was calm and the snow was really fluffy, transforming my little corner of downtown Toronto into a magical winter wonderland.

So you have to go out in it, right?

Tuesday, February 23, 2016

Going to the Mattresses: My Quest for a New Bed to Help my Chronic Pain

I need a new bed. More specifically, I need a new mattress, and as my current bed frame is a double XL, and there isn’t a lot of choice in that category, I decided to go for a whole new bed. I had a couple of requirements: a double bed, no higher than 22 inches (reason below), fairly soft to make my Fibro-and RA-riddled body happy. You’d think that wouldn’t be too difficult. 

You’d be wrong.

Cue entry into a rabbit hole of confusion, frustration, and ridiculous expense. This particular adventure can be loosely categorized into the following categories:

Height issues
This is a combination of my height versus the height of the beds. I’m fairly short (5’2” on a good day), and beds have become quite high. High enough that people below the size of an NBA player would need to jump into these monstrosities, or require a footstool or ladder.

Since I use a standing pivot transfer to move from my chair to another surface, my butt was significantly below that of the surface of many of the beds. Which means they were not accessible for me to try.

This significantly reduced the number of options.

A foamy morass
There are precious few mattresses that are simply spring coil these days. Or rather, inner coil as they are now called. And what I found is entirely too firm for me. If you want anything that soft, you have to include memory foam. Sometimes in a coil with foam, but foam is everywhere. Foam, foam, foam. Either as a topper of memory foam, or the entire mattress is foam.

On the surface, you’d think this was exactly what I needed. Foam is softer, right? Well, yes and no.

On one of our excursions to a place that had mattresses, we brought along my mother who needed to replace a crappy one. She found one that was wonderful, bought it, and waited impatiently for the delivery. When it came, the mattress was as hard as wood. After the fact, the salesperson told her it needed to be “broken in.”

Much later, another salesperson told us that memory foam mattresses need to be broken in. That essentially the foam is all closed up, and the pressure of your body as you move on it breaks open the foam and that’s when the softness happens. This process usually takes at least a month, but sometimes up to six months.

Given how sensitive my Fibro body is, memory foam is a bad idea. I’ve gotten wrecked from lying on one of these mattresses for 10 minutes, nevermind an entire night. Except memory foam is the only thing that’s as soft as I need. Supposedly, you can break up the foam faster by moving around on it on your hands and knees, or, if you like me have a pair of active twin niece and nephew, getting them to roughhouse on it. That’s a big risk to take, though.

And then there’s the smell
Something else happens when the foam breaks open. It releases a gas. This process is known as offgassing, and in is anathema to every person with asthma and allergies out there (I’m one of them). Because it smells. And that induces asthma attacks. If you live in a house with a cold basement or a porch, you can attack the thing there and let it off gas before you finally move it into your bedroom. I live in a one-bedroom apartment.

And did I mention the hotness?
Foam tends to be hot. I’ve always been pretty warm at night, usually sleeping with my feet outside the covers. Then menopause happened with nocturnal hot flashes. I need a bed that sleeps cool. 

Enter special designs that somehow makes the foam sleep cool, except I’m not sure I believe it. Especially because all of these mattresses are covered with that velvety polyester material that is by definition warm.

What about latex?
Latex mattresses, such as the Casper, are all the bomb these days, supposedly moulding to your body and also supposedly excellent for people with pain.

I’m allergic to latex.

Tempur-Pedic gets its own category
Everything I’ve read about mattresses and chronic pain mentions Tempur-Pedic. I looked at their website, and decided what I needed was a mattress in the ES class, which is softer than many of the others. The problem with mattresses is that they are also higher than others (see height issues above). After a couple of frustrated excursions to unhelpful places, we went to The Brick. We get there, looked at the Tempur-Pedic’s lined up three in a row. Unfortunately, they were the TEMPUR-Flex, but it was worth a try.
The softest mattress was too high, so I decided to try the one I could get into, to attempt to guess whether that would work. It wouldn’t. But while lying there, I took a look at the other beds and asked whether we can push them together.

We could. First pushing the firm to the medium-firm, and then the medium-firm to the medium-soft. And then I slowly inched my way along the velvety polyester fabric, sort of like a sideways inchworm. I made it to the medium and that didn’t work, then made my way to the medium-soft version. Not soft enough.

And then I had to inch my way back across 15 feet of velvety material that afforded such a level of friction that my pants almost came off!

I did some more research and discovered that The Bay had the ES line. I called, and they were willing to arrange moving mattresses around. However, they only had the soft Tempur-Pedic, because anything softer than that was too soft to sell much. Although the mattress was fairly comfortable, it was obvious that I needed to go at least a level softer. But even if that could be achieved, there are three other significant issues.

One is the gully. Because memory foam mattresses adapt to your body, essentially creating a you-sized shape in the mattress and that can be hard to get out of, especially for people with limited mobility.

The second is that the memory foam would probably make this mattress sleep fairly hot. Problem three is that Tempur-Pedic are known for offgassing for quite a while.

Where am I now?
A bit stuck. All I want is to go back in time and pick between a firm, medium, and soft spring mattress that I could then bring back to the present.

More to come.

Friday, February 19, 2016

Your Life with RA Third Anniversary Sale

Three years ago today, Your Life with Rheumatoid Arthritis: Tools for Treatment, Side Effects and Pain was published and I fulfilled my lifelong dream of being an author.

It’s been an amazing three years. My little book was very well received by people who live with RA and I have been lucky enough to meet many of you, some in person, most by email and on social media. Every time I do, it warms my heart and puts a smile on my face.

When you sit in front of your computer for months and years and write, you hope that your idea for the book is going to resonate with others. You imagine the people who will enjoy your book and, in this case, find help in it to live better lives with a difficult disease. Knowing that over 2500 of you (so far) are reading those words is incredible to me.

Some of you were kind enough to leave a review on Amazon. And although it is totally uncool to say this, I’ll admit to having read those reviews more than once. On the days when the writing is like pulling teeth, they are immensely encouraging.

A gift to you
In the last three years, I’ve been overwhelmed by the readers I’ve met, and you have made this journey of becoming an author of more than I ever thought it could be. So on this third anniversary of Your Life with RA, I want to give back.

I’ve created a coupon to get an e-book copy of Your Life with Rheumatoid Arthritis: Tools for Treatment, Side Effects and Pain for $.99, instead of the usual price of $5.99. 

That’s an 83% savings!

When you buy Your Life with RA on Smashwords, enter the coupon code KL33L at checkout to apply the discount.

The Smashwords edition of Your Life with RA is an EPUB file, which you can read on a variety of devices and apps.

Act fast! This coupon expires Sunday at midnight PT.

Thank you for celebrating this third anniversary with me!


Tuesday, February 16, 2016

Longing for a difference: Super Bowl Ad and Opioid Addiction Insanity

A little over a week ago, this ad ran during the Super Bowl

It deals with opioid -induced constipation and is, in my opinion, both discreet and direct, as well as very, very charming. It’s a very subtle ad for a medication that might help, but it is also much more than that, sending a message that people who take opioids are out there in the world among us, normal people living normal lives. And it’s created in partnership with a number of excellent organizations, such as CreakyJoints, For Grace, US Pain Foundation, American Chronic Pain Association and The Power of Pain.

Immediately, lots of people made a joke about this being an ad for constipated junkies, Bill Maher among them. But it didn’t stop there. Others were outraged, including the White House Chief of Staff, who tweeted “next year, how about fewer ads that fuel opioid addiction and more on access to treatment.”



The very first words in the ad are “if you need an opioid to manage your chronic pain.” The fact that the reactions are so incredibly off the mark makes me worry whether this is the tipping point. Has the War on Drugs now officially succeeded in equating opioid use with addiction, to the point of that people are (wilfully) closing their eyes to the very legitimate role opioids play in the management of severe chronic pain? How else could an intelligent person like the White House Chief of Staff claim that this little ad fuels opioid addiction? I’m still stuck how on earth that could possibly be the case, but will move on to something else. Namely the issue of access to treatment.

I don’t mean the kind of treatment that Mr. McDonough mentioned. I mean the treatment of chronic pain, which is getting harder and harder to get. Because chronic severe pain often requires opioids. Due to the government cracking down on the “peddlers” of the drugs (i.e., doctors), it is becoming much harder for them to write the prescriptions without being scrutinized in an extremely obstructive way. It’s also getting much more difficult for the “junkies” (i.e., the people living with chronic pain) to fill their prescription. In New York, it is now against the law for pharmacists to stock more than a certain amount of any opioids, which mean that they may not be able to fill prescriptions.

The people who suffer in all of this are the people who live with chronic pain. I don’t often use the term ‘suffer,’ but in this case I mean it. Having the kind of chronic pain that requires treatment by opioids,  and not being able to get it treated, is tantamount to being tortured. And that’s what happens day after day, all over the US and Canada, where millions live with high levels of chronic pain. With these increasing restrictions, based on scaremongering, we are held prisoner by the War on Drugs.

Unfortunately, the Geneva Convention doesn’t apply to us, and thus, the torture continues, while the world and men like Maher and McDonough look down on us as junkies, all the time perpetuating the stereotype that opioids = addiction.

But it doesn’t. A large meta study showed that when prescribed and taken correctly, taking opioids result in addiction in a quarter of one percent. (1) When you add people who have previously been addicted to the sample being studied, that number increases to a whopping 3.3 percent. (2)

That means more than 97 percent of those receiving a correct prescription and, likely, education in how to take the medication correctly, do not get addicted.

So where is the opioid crisis coming from? I suspect a lack of education, both of doctors and patients. Most doctors don’t know the intricacies of pain management techniques, nor do they have the time or the resources to properly educate their patients. Additionally, the people who are not getting the prescriptions that they need may seek the pills elsewhere — because remember about the torture — and, not receiving the supervision of a doctor, may take them in a way that could lead to addiction.

Maybe if a fraction of the money spent on the War on Opioids were to be spent on education materials, the rate of addiction would go down. Instead, they blindly restrict and compassion flies out the window. Dan Malito has a theory that we are on the way to banning narcotic medications entirely, and I think he might be onto something.

The ad that started this rant ends with the suggestion that if the viewer is longing for a difference, they should check out the website.

I am longing for a difference. As are so many of my peers who rely on opioids to achieve a basic quality of life. Because that’s what it is about for us. These drugs make the difference between being housebound, maybe bedbound and perhaps suicidal, and being able to live our lives, to be there for our families, to work, to contribute, to laugh.

We are your friends, your family, your neighbours, and your colleagues. And we need your help. Alone, we cannot fight this tide of crazy.

Help us turn the tide.