Tuesday, May 31, 2011

RA Goes to the Oscars: an Interview with Christine Schwab

   
Last week, I had the opportunity to interview a very interesting woman:

"Christine Schwab wants to change how the world sees rheumatoid arthritis.

Diagnosed 20 years ago, Christine has been in hiding about her RA for almost as long. She knew that if she "came out" about her disease, she would lose her career as a fashion and style reporter working with major television shows such as Live with Regis and Kelly, The Oprah Winfrey Show, The Today Show and Entertainment Tonight. Throughout the 90s, she was desperately sick with flaring RA, trying every combination of medication available with minimal results. Although she never missed a day of work, the RA continued to take its toll, robbing ber of function, changing her joints and affecting her ability to live her life. Once, she had to walk out of the Oscars, barefoot with her designer shoes in her hands because her feet were too swollen and her pain levels too high to stay for the event."

You can read the rest of the post here.
  
 

Monday, May 30, 2011

Range of Motion

   
Remember the Super Moon? It happened a couple of months ago and I'm not going to try to explain the science - NASA does it so much better - but suffice to say, it was the full moon and it was huge. So naturally, I dragged my mother out with me and we meandered about the darkened streets of downtown Toronto, hunting down the moon. Despite having given it a good hour to hop up over the horizon and rise above the urban landscape, we didn't have much luck and headed home. Almost there, I decided to turn around for one last look and there it was:


I took a lot of photos that night. I love my camera, but it isn't very fast in the dark, so every image was slightly fuzzy. I found a bench and tried to rest the camera on that, leaning out over my left armrest to find a surface that was reasonably flat, but still a good angle to get a picture. Then I did the same on a garbage can and by this time, we've been out for a good hour and I was shivering with cold which didn't help matters in terms of getting a non-shaky image. Nonetheless, I kept on going and at some point heard my mother's voice behind me saying "no wonder you hurt if you put yourself through those kinds of contortions to take pictures."

There is much talk in the disability field about range ofmotion exercises. It means taking a limb through the extent to which it can move and it keeps joints from developing contractures or fusing. There have been times where an eager health professional will discuss - okay, monologue – about getting the attendants who provide service for me to do range of motion exercises. Thanks to the fibromyalgia, my body does not respond well to other people moving parts of it because it's very easy to go past my limit and my body responds to such indignities with a month's worth of injury. Still, eager health professionals persist and I’ve finally found the perfect comeback.

Very simply, I say "my entire life is a range of motion exercise."

When I make a cup of tea, I hold the cup in my left hand and reach forward to fill the cup, reach to the side to put the cup in the microwave and then move my right hand across my body to press the numbers. This takes me through my range of motion as far as my arms will go in several directions. Playing with Lucy does the same, as do brushing my teeth, making lunch, putting groceries in the door of the fridge, turning off my computer by pressing the button on the power bar with my foot, using the other foot to press the automatic door opener to get into the bank and… well, you get the idea.

It shuts up any well-meaning professionals. Okay, it makes them laugh first and then makes them go away so I can get on with my life range of motion exercise.

Pretty handy.
   

Thursday, May 26, 2011

Speaking About the Unspeakable

   
I'm in a rheumatologist's office, discussing starting methotrexate. This is long before the miracle of Enbrel and Humira, my first shot at one of the more serious drugs for RA, but my disease is flaring and something needs doing. Methotrexate is the gold standard and can be very effective. It is also very toxic so the rheumatologist is taking me through what’s necessary. Take folic acid, blood tests every six weeks to test liver function, and never, ever, even a drop of alcohol. They sit at the desk, turned away from me, writing notes in my file. End of discussion. Except I, having done my research, know that methotrexate also causes horrific birth defects.

"What about birth defects?" I ask. There’s a beat, then the doctor turns around, looks at me and asks, a note of alarm in their voice, "are you sexually active???"

They never think we are. When you live with a chronic illness or disability, doctors tend to assume that you don't have a life, nevermind one that involves physical intimacy. And it's often one of the biggest questions in the minds of someone who has just been diagnosed with RA (or any other chronic illness) or a person who has a disability. How will this affect my sex life? Will I still be desirable? What if it hurts? What if I can't do it the normal way? Will I ever have sex again?

Today, I am answering the challenge of the latest ChronicBabe blog carnival: to speak out about sexuality and chronic illness to help other women. And it is a challenge, because this is one of those areas that I consider private and not blog fodder. Especially since speaking about this in a personal way would also affect The Boy’s privacy - suffice to say we're very fond of each other and express this enthusiastically in a variety of ways.  A-hem. Therefore, what follows will be pretty general.

Yes, RA will affect your sex life and often in ways you didn't expect. One of those ways is that doctors will avoid the topic like the plague, so you'll have to bring it up. This can be nerve-racking. But it's also necessary because there might be information you need to be safe.

When you have RA, talking to your doctor about with which joints you need to be extra careful with during sex is a good idea - you don't want to spend a wonderful time with your beloved (or a perfect stranger, I'm not judgy) and have to heal for days afterwards. If you have RA in your neck, it is essential that you do not hyperextend it. Hyperextending - or bending your neck all the way backwards or forward - can, if your uppermost neck joint is unstable due to RA damage, cause a catastrophic spinal cord injury or kill you (nervous, yet?). Getting a CT scan of your neck is a good precaution. You should also teach yourself not to hyperextend during the throes of passion. You may wonder how this is possible, as it seems to be instinctive when you're having a really good time. Trust me - it's possible. You need to be a little more conscious and aware, but it'll soon become second nature. One trick is to bend your upper body slightly instead, i.e. do a mini sit-up (extra benefit: also excellent for your abs!). If you have a steady partner, you can also ask them to help you avoid hyperextending.

Endorphins are the best painkiller in the world. If you are in a lot of pain, find a way to have an orgasm. Much better than opioids (and more fun). However, taking a painkiller before you have sex can not only make it more enjoyable, but also give you more bang (sorry) for your buck (so to speak). Painkiller + endorphins = maximum pain relief. Be careful, though - endorphins can also mask your body's warning signals that something hurts, so to minimize painful aftereffects try to stay within your limits of physical activity. There's a great site that has information on arthritis and sex, including a list of positions that can be easier on your body.

Then there's the adventurous sex that you're convinced you'll never have again. Very few healthy/able-bodied people actually swing from chandeliers. Or if they do, no one's ever told me. Sex is 90% mental and that means the adventure is in the minds of the participants. Whether it's role-play, endless foreplay, use of props or any other intriguing activities you can find in books or on the Internet, how you approach this is only limited by your willingness to experiment.

What if your body has limitations, the kind of limitations that means you can't have "normal sex"? I don't think there actually is such a thing as normal sex and for those that say differently, I opine that they have very little imagination. Eating chocolate cake can be sexual and so can anything you and your partner find pleasurable. If your partner makes you feel like you're not good enough, not exciting enough or not sexy, dump them. There is someone out there who will think you are the most gorgeous and sexy person in the world. Don’t you owe it to yourself to find them?

Sex is a normal part of being human and just because you have RA, another chronic illness, or a disability doesn't mean that you're not human. Embrace your sexuality, explore it, own it. Know that you are sexy and sexual no matter what you look like or how many people won’t talk about it. Refuse to be silenced. Refuse to be neutered. 


The MyRACentral last and biggest Arthritis Awareness Month contest is now live. You can win a $200 gift certificate to CVS and I'm hoping for so many comments that I'll whimper when I have to judge them. You don't have to have RA to enter, so pop on over, leave a comment on the post, please spread the news and help make a grown woman cry!
   

Tuesday, May 24, 2011

Fancy

  
Not too long ago, I mentioned that Ken had asked me to come with him to a fancy event, which naturally send me into a frenzy of overthinking, given that I haven't been out to anything fancy for years. Said event was this


The March of Domes' 60th celebration. Seeing the program brought me from overthinking into anxiety. Not only was is being held that one of the fanciest places I know, the Royal York hotel, but there were also going to be Important People there. Although I did manage to find clothes in my closet that fit the bill, when I tried makeup, it made me itch - damn fibromyalgia and its chemical insensitivities - and my elegant shoes hurt my feet, so I chose comfort over style. Essentially, I hoped the clothes would distract from the lack of fancy on my face and feet and designs. There were Very Important People in the room, so I could stay in the shadows.

Before everything got going, we play tourists and took photos of the lobby 


 
ourselves attacking a hapless piano



the Canadian Room where the dinner was held (this one is for Janne/TinkMama who wanted to know what it looked like) 


and the breadbasket

Photo by Ken

Because... well, don't everyone take pictures of their food when it looks that good or is it just my family?

And then there was speeches, some of them better than others, but most very good. The man who accepted the award for TD Bank was particularly impressive in terms of his inclusivity and perspective on hiring people with disabilities. This is one of the reasons I bank there. But then came the main event, the keynote speaker and I don't often gush - okay, I do gush when it's warranted and in this case, it really is. Bob Woodruff from ABC News spoke about his experience being wounded in Iraq and his recovery. and it was the closest I came to doing a standing ovation in longer than I can remember. His grace and eloquence when telling this difficult story and his leadership in bringing attention to injured veterans are impressive, commendable and he is clearly a good man.

   


Friday, May 20, 2011

Perfect Comebacks

   
Perfect comeback #1:
Barnes & Noble and Borders in the US have requested that a magazine cover up due to what apparently has a controversial cover: an androgynous-looking man with his shirt off wearing makeup and girly hair. Because, says B&N "the model is young and it could be deemed as a naked female." I've seen the picture (click on the link, it's in the article) and don't see it, but some people spend their lives working really hard to see filth everywhere.

In Canada, Lisa Huie, the public relations managers of Indigo and Chapters (our version of the large chain bookstores) says in a statement "[o]ur company provides the choice and availability of a wide range of books and magazines for our customers, even when some books or magazines may contradict the opinions and sensibilities of some customers." Thank you, Lisa Huie, for that bracing reminder.

Perfect comeback #2:
I was reading the New York Times review of the movie Bridesmaids (they loved it) and in the review, they linked to a 2007 Vanity Fair column by Christopher Hitchens entitled "WhyWomen Aren't Funny." Sure, it's four years old, but I hadn't seen it before and was planning to pick it apart in a post talking about personal opinion and taste, lack of a cohesive argument and what happens with the development and maintenance of stereotypical beliefs. However, I am currently reading Tina Fey's Bossypants -which I would buy for every woman (and most men) I know if I had the money -  and she says it much better, so I'm going to quote her instead. In the book, she mentions that both Jerry Lewis and Christopher Hitchens have argued that women aren't funny, makes it clear in a rather elegant way that she's not picking on them specifically, but on the opinion held out there by the famous and not-so-famous and says:

"Every time there's a bad female standup somewhere, some dickhead interblogger will deduce that women aren't funny … Unless one of these men is my boss, it's irrelevant. My hat goes off to them. It is an impressively arrogant move to conclude that just because you don't like something, it's empirically not good. I don't like Chinese food, but I don't write articles trying to prove it doesn't exist."

Thank you, Tina Fey!
   

Thursday, May 19, 2011

Enemy Within: An Interview with Karen Ager

   
I got the chance to interview a fascinating woman:

"Born and raised in Australia. Spent two years as a "virtual prisoner" in a fourth floor walk-up living with her mother unable to walk. Nanny to a rock star's children. Survivor of an abusive relationship. Tireless advocate for RA. Teacher at the United Nation's International School in New York City. Happily married. All these are Karen Ager, but there's much more to her story."

You can read the rest of the post here.
 

Wednesday, May 18, 2011

The Poplars Popped

  
   
Yes, I know I post one of these every year. I can never get enough of this delicate green. 

Monday, May 16, 2011

2010 Moby Dick: A Celebration

   
Saturday evening, at about 8:28pm (OK, at exactly 8:28pm), I finished the first draft of The Book.

Cue sparkling confetti falling from the ceiling, popping of champagne corks and triumphant blasts from the horn section in the corner of my living room. You’d think, right? It was, rather to my surprise, what my brain had expected would happen at this moment and when it didn’t – to my even greater surprise - I was oddly disappointed. However, earlier in the day, I had acquired just the thing for a very satisfying substitute, namely 2010: Moby Dick. Go ahead, check it out.

See what I mean? With that cover, how could I resist? And it turned out to be so incredibly terrible that it was beyond wonderful. Although my favorite "so bad it's good" movie remains Anaconda precisely because they didn't intend for it to be that way and I suspect the makers of 2010: Moby Dick knew exactly what they were doing, this one was so enjoyable I might actually buy it used for couple of bucks when it hits the remainder bins at my video store.

As an aside, why is it still called the video store? Because "the DVD store" sounds ridiculous? Anyway, moving on.

Before I get to a few examples of why 2010: Moby Dick was so fantastic, a short summary of the story. Which is allegedly based on Melville's book, but I suspect only very loosely. There is a white whale and a man named Ahab (played by Barry Bostwick), as well as others named for characters in the book, but Ahab commandeers a submarine and the whale is a 600 feet prehistoric beast. It appears to have been around for a long time judging by the forest of harpoons decorating its back and there was a hint somewhere that it's truly prehistoric, having lived for hundreds and hundreds of years. Perhaps millennia. Long enough to develop a thoroughly bad attitude, anyway. We have a sort of heroine, a female marine biologist who specializes in whales with her sidekick Pippin. The first time she meets Ahab is when the submarine pulls up next to her and commandeers her services and equipment from the wee rowboat called "the Coffin" in which she is testing a whale calling doodad she's invented. Already, I’m hooked.

The Marine biologist works for "The Institution." No, not The Institute - most other marine biologist might work for an institute of something or other, but this one works for The Institution. I suspect everyone involved in making this movie might have. She is at first reticent to go on a hunting expedition, but changes her mind because… well, I'm not exactly sure why, but at least she made a token objection. You see, Moby has been running amok, smashing a whale sighting boat and an oil rig and is clearly revving up for something good. So they go chasing it, there are complications with Ahab not telling his superiors what he's doing and they sending someone after him because they believe he's gone rogue. Conveniently, the whale eats the pursuers, although I believe the rotors on the helicopter might have scraped its mouth. 

There is much chasing, much roaring and bellowing from Moby Dick (I had no idea that whales roared, but maybe that's because I've never seen a prehistoric one before), much chewing of scenery – Bostwick’s brilliant performance is probably enhanced by the fact that most everybody else in the movie couldn't act their way out of a paper bag - and they eventually manage to distract the whale from going medieval prehistoric on a cruise ship and herd it (the whale, not the cruise ship) into an atoll. At some point in these proceedings, someone tries to dissuade Ahab from the hunt by asking "how many more people must die?" and no one mentions stopping the rampage that the whale is on by citing oil rig workers, tourists or cruise ship passengers. Nope. Instead Ahab passionately engages in some verbiage that is no doubt directly lifted from the Moby Dick Coles/Cliff Notes. I don't know who wrote this - they're clearly skilled enough to pull together a screenplay, but apparently not terribly familiar with logic.

As you might imagine, things go badly in the lagoon and people end up on a small island. Marine biologist, Ahab and a few others sit on a hill by a cemetery from an old leper colony and Ahab is having trouble because he lost his prosthesis somewhere. After waving his stump about to make sure everybody's seen it, he naturally grabs one of the crosses, attaches it to the end of his leg and stomps off with deranged purpose. Shortly after that the hunters become the hunted when the whale somehow becomes able to move around on land. Bellowing furiously.

I haven't laughed that hard watching a movie in a very long time. And, very thoughtfully, one of the trailers on the DVD gave me a tip for what my next movie rental should be. I’m saving it for when I’m done with the re-write of The Book.

What's your favorite "so bad it's good" movie?
   

Friday, May 13, 2011

RA and Fibromyalgia

   
Yesterday was National Fibromyalgia Awareness Day in the US, but by the time I carved out some time to post, Blogger had inexplicably gone down. And remained so for most of today. So… Herewith is yesterday's post.

If none of Fibromyalgia Awareness Day, Karen Lee Richards and I interviewed each other about living with RA and fibromyalgia. Karen is the Community Leader on HealthCentral's Chronic Pain site and is my go-to source for information about fibromyalgia and its treatment, as well as other issues related to living with chronic pain.

My interview with Karen is in two parts here and here - lots of good information about fibro, treatment, history similarities and differences with RA and much more. Her interview with me is here.

If you're in the US, Our Week 2 contest is open until Sunday at 6 PM EST.
  
   

Monday, May 09, 2011

The Best Intentions


I sat down (metaphorically) at the computer, fully intending to write something clever, thoughtful and erudite for today's post. I feel as if I've woefully neglected my blog in the insanity that has been the launch of MyRACentral's Arthritis Awareness Month festivities (new contest starts today!). In order to be clever, thoughtful and erudite, I need mental space to wander about and kick the baseboards (again, metaphorically), letting my brain chew at the week's happenings and sooner or later, something will crop up.

Not today, it won't.

The stress bunny thing has continued to the point that I've entered a binary state. I'm either full-on hysterical, getting ever closer to my goal of moving faster than the speed of light and juggling roughly 26.5 balls or a vacant blob, capable only of drooling (usually metaphorically) in front of the TV. Friends have told me they don't expect much from me this month and I am grateful for their understanding, because I'm starting to believe they may be right.

I took the weekend off. Well, more to the point, The Boy stated his intention to "come over and sit on me" to prevent me from working and followed through (largely metaphorically). This meant really good food, excellent conversation, wandering about the neighborhood taking pictures of flowers in bloom or a state of imminent bloom

 
  


utilizing his shoes as a playground for Lucy


having several naps and as an added bonus, getting my mother booked on Angry Birds. When I went back to work again last night, I even felt vaguely human.

Not human enough, I'm sorry to say, that I could come up with something brilliant about last Friday. I had plans, really I did. This year, I was finally going to remember that my 6th blogiversary is in early May, not the end of the month. I was going to do something cool. Following through on my intentions from last year where I murmured mysteriously about having plans for something nifty that would happen around this date. The plan was to change the look of the blog and it didn't happen. It also didn't happen this year, because I can't find a template among the new ones offered by Blogger that speaks to me in the same way this one does. By the time I finally accepted that the nifty changes weren't going to happen this year either, I moved on to the idea of writing something meaningful about this community, this world that has taken me in. I was going to write about how much you mean to me, about feeling so blessed - I have friends I have never seen, support, encouragement and laughs. I have knitwear sent to me in the mail - knitters are the best! - from Earin (here I attempt to look like a fancy model, but instead only succeed in looking like a dork)
 

and LynnM (who still doesn't have a blog, but really should) 


and I consider myself a lucky, lucky woman. Because of you.

That didn't happen. The writing of something beautiful and profound, that is. Instead, you get the binary me who feels wholly and completely like I won the lottery. Thanks for being there.
   

Thursday, May 05, 2011

An Odd Comparison

   
A friend of mine introduced me to The Dresden Files by Jim Butcher. It's a wonderful series of books, a mix between hard-boiled detective fiction and the paranormal. Our hero is Harry Dresden, a wizard working in Chicago. Or barely working - as is the tradition of hard-boiled detective fiction, he doesn't make a lot of money and tends to get beat up a lot. I inhaled the first two books in the series and they promise to be the start of an ever unfolding and complex universe, one that my friend says just keeps getting better.

What improves the excellent storytelling even further is that the audiobooks are narrated by Spike James Marsters and this alone pretty much ensured that I’d get the first book. Initially, I had a bit of trouble getting over the fact that Spike was reading to me, but Marsters quickly persuade you that he’s Harry Dresden and Spike leaves the building (which is sort of sad, because I still miss him. I miss the whole Buffy-verse). Great story + great narrator = Lene will get her hands on the entire series and likely read it all by the end of the year.

And then something else exciting happened. I found out that there’s a TV series based on the books! Alas, it only lasted one season, but despite some slightly wobbly reviews, I got my hands on that, too. Aforementioned slightly wobbly reviews seem to primarily be upset about the show not being that true to the books, which I didn't mind because that allowed me to watch it before I’d read all 13 books. The show stars Paul Blackthorne as Harry Dresden and he's a rather excellent choice. I don't so much mind the actual personification of Bob, can accept Murphy as a brunette and so forth.

And here's where I get to my point. Because the pilot is… is…. Really sort of bad. Don't get me wrong, the acting is pretty good, the story line is even relatively close to the first book (I think it's  the only episode that reflects the books), but the soundtrack is…. is…

Okay. It sounds like 70s porn. Not that I have watched a lot of that particular genre and era, but it's the only description I can come up with. The music is obvious, synthesized and so much in the forefront that it ought to be a character in the show. Every time it started up, I had visions of bare-breasted women gyrating across the screen and was continually vaguely surprised that it didn't happen. And then there're the special effects. Which are also decidedly 70s porn. And sure, in my admittedly very limited exposure to such movies, they don't tend to be rife with special effects, but you know what I mean. Bargain-basement, probably done by a film geek highschool nerd as a special project.

The good news is that these oddities seem limited to the pilot - I've watched two additional episodes and there’s blissfully so far no remnants of bellbottomed sexy-time. Still having a good time and wish Michele had been better so it would’ve made it past the first season.

But then, the books are still going strong. For good time, go read ‘em.
   

Wednesday, May 04, 2011

The Arthritis Foundation: Changing the Future of Arthritis

   
The festivities continue over at MyRACentral. Today, I posted an interview with Dr. Patience White, VP of Public Health with The Arthritis Foundation about the services and programs and how we can get involved in advocacy and fundraising:

"Arthritis is Unacceptable.

That's quite a statement, isn't it? It's the philosophy guiding The Arthritis Foundation's efforts during National Arthritis Awareness Month. It's why the motto for 2011 campaign is Take Action!

Consider the numbers:

Arthritis costs the economy $128 billion annually,
Almost 300,000 children live with juvenile arthritis
By 2030, 67 million Americans are projected to have arthritis"

You can read the rest of the post here. And don't forget to enter this week's contest.
  

Tuesday, May 03, 2011

Monday, May 02, 2011

Stress Bunny & Loving It: Arthritis Awareness Month

   
First, a note: If you live in Canada, today's election is a nailbiter. If you can vote, please take the time to do so. If you don't, it's a vote for Harper and dude's gotta go...

And now for the post:

On Friday, Laurie called me a "stress bunny." She's entirely right, but there is a very good reason for the stress. Remember the big projects I moaned about last week? One of them has just launched.

May is National Arthritis Awareness Month in the US and over at my place of employment, we have Big Plans. It started out very reasonable. A couple of interviews, maybe a small contest. And then we got all sorts of good ideas, pursued them all based on the assumption that if half of them worked, it would be fantastic. Turns out that a lot of them worked out (yay!) and some lead to other ideas and before we knew it, things had gotten severely out of hand. Don't get me wrong, it's the sort of out of hand that's really exciting, but if I think too closely about what exactly I have to do over the next 4-6 weeks, I start whimpering, so denial is the word of the day.

So what is all this excitement about? Throughout the month of May, MyRACentral will be featuring lots of great articles, including interviews will well known people who live with RA. I tried to interest Sir Christopher Lee in having a chat with me – y’know, what with us being RA peeps and all - but for some odd reason, his representative never replied to my very nice letter. This might be a little illustration of how out of hand things got, because it seemed entirely reasonable to believe that I'd hear back from them. It could've been a terrific way to finish a month-long celebration and it did not escape my attention that every geek I know would be chartreuse with envy. So, Sir Christopher? If you're out there, and can use a break from filming The Hobbit, shoot me an e-mail and we'll set up a time to talk.

Where was I? Right. The festivities. We also have contests every week, May 2, 9, 16 and 23 and you don't have to have RA to enter. You do, however, have to be a US resident - I don't quite know how to get it international, but we might figure that out by next year. The prizes are CVS gift certificates to help the winners buy meds (or nail polish, if that's what rocks their boats) and I'm really excited about the whole thing.

The goal of it all is to raise awareness about arthritis. Millions of people live with chronic illnesses like RA, lupus, psoriatic arthritis and all the rest that fall under the arthritis umbrella. On top of that, there's osteoarthritis and more of us experience that every day. The Arthritis Foundation believes that's unacceptable and y’know? I think that's a terrific starting point.

You all know at least one person who has RA: me. Many of you live with it yourself or other chronic conditions or disabilities. And if you plan to live past the age of 40, chances are you will be experiencing a dollop of osteoarthritis yourself. You have a vested interest in this.So... for the month of May, please help us raise awareness about arthritis - talk about it, let others know about what MyRACentral is doing, come on over and enter a contest - the first one started earlier today - and if you have Twitter or are on Facebook, please consider adding our RA Awareness Twibbon designed by ThriveWithRA to your profile picture.

It's going to be a lot of work, but I'm going to love every minute of it. We have come so far already - let's kick arthritis to the curb!