Sunday, October 31, 2010

Remembrance


Today is Mojo’s birthday. Well, to be honest, I don't know her exact birthday - she was about three months old when she came home with me on February 1, 1997 and given the name I chose for her, Halloween seemed like the perfect birth date.

I've been thinking of her lately, more so than is usual - Lucy takes up an awful lot of room and couldn't be more different from Mojo (the only thing they have in common is that they're both felines), so despite often having a sense of her, sometimes it's hard to remember details around all the Lucyness. The other day, I was going through some of my pictures and popped into a folder from about a year ago and there she was. My Mojo. And my first thought was holy crap, she has a lot of hair


After six months of a shorthaired cat, I’d forgotten what the long-haired one looked like. And then I went through some more photos and smiled and cried a little. Played the what if game, beat myself up for not somehow knowing sooner, getting her to the vet faster and then I decided to stop that and just remember 13 years of love.


I read the posts I wrote about her, the one written three years ago, the post after the diagnosis and the one I wrote after she died and they made me smile and cry again. And now I remember, I feel her close to me again and it feels as if there are two cats here, one who is warm and the other a shadow, just as she was my shadow in life.

I miss you, my Moocher.


Thursday, October 28, 2010

Thank You

Chuffed. Tickled pink. Over the moon. Validated. I feel like Sally Field.

I won Best Chronic Illness Blog in the Canadian Blog Awards thanks to you and I want to let you know that it matters, just as it did two years ago. It matters that the CBA had a category for Chronic Illness, it matters that people cared enough to vote for the nominees in the category and on a personal note, it matters to me that I was nominated.

I want to thank The Boy for nominating me, the other nominees in the category Graceful Agony and Chronic Connection for being such fantastic bloggers, the Canadian Blog Awards for doing this every year and for making me aware of so many great blogs, Dave Hingsburger who asked his readers to vote for me, too (Dave won two categories.). And you, the readers who voted for me. This means a lot. And I'm looking forward to figuring out how to put the button on my sidebar.

But here's the thing... Much as I'm really jazzed about this - look at me go, I found another metaphor about being excited - it is the rest of the year that matters the most. The Internet lends a social outlet to those of us who can't get out much. That's the theoretical statement, one that doesn't begin to touch on the reality. Because it's coming here to my little corner of the internet and finding you reading my posts, joining in the rants, laughing at my idiocy, sharing your own stories of disability and pain, putting up with my inability to e-mail or comment on your blogs as much as I'd like, offering support during the rough times and encouragement when the good things happen. Here is a group of friends who have that most special and rare thing: a genuinely liking and love for each other for who we are, people living with chronic illness or disability, people who don't, people who knit and those who don't, parents of kids, parents of cats (and dogs), lovers of chocolate and… well. Pretty much everyone loves chocolate. But yeah. I can look around and see you there, in the comments, in my bookmarks, in my inbox and you are the real prize.

Thank you.

Wednesday, October 27, 2010

Monday, October 25, 2010

Like Snow


Legend has it that the Inuit, who live with snow of a variety and duration unknown to those of us whose winters lasts only a few months of the year, have a hundred words to describe the flakes and clumps and drifts of white and cold. Likewise, most people have an only occasional experience with pain and as the language of a culture is shaped by the majority experience, our world lacks descriptors of pain beyond the basic - burning, stabbing and not much else. It occurred to me to rectify this. And so, a list developed.

The Ginsu. Named after the famous knife, it describes the pain experienced after surgery, a broken bone or similar injury. It is clear, clean and sharp and although it can be intense, its temporary nature, knowing that every day, it will be a tiny bit less, makes it easier to endure.

The Gym. This feels much like the pain experienced after a serious workout – the tired, achy feeling invading your muscles after doing too much. Crank it up to the max point where you feel stiff as a board and you have a fibromyalgia flare. The aftereffect feels like glass.

The Drill. A short, sharp burst of localized fireworks that feel like the way a dentist’s drill sounds. Often associated with a joint slightly shifting in a way it's not designed to move.

The Taffy. Imagine the sensation of pulling taffy or a caramel stuck in your teeth.  Now imagine it in your body. Sticky and chewy, The Taffy envelops everything, adhering to every nerve ending, as impossible to remove as fresh bubblegum stuck to a shoe.

The Dirty Cotton.  Think of a used ball of cotton: grey and a bit greasy. Add almost-dull glass splinters throughout. Imagine being inside this ball. Rheumatoid arthritis pain is a lot like this. 

The Fog. Similar to the Dirty Cotton, the Fog has the added effect of seeping through your body, invading your brain, making you feel heavy, fuzzy-headed and incapable of clear thinking.

The Gnaw. This pain doesn’t do much, except nibble at you. It is not immobilizing, yet colours everything you do, all the time, every minute. You can still function, laugh, talk, but the constant presence of the small gnaw adds stress to every moment. 

The Nag. A louder cousin of The Gnaw, the nagging pain is almost an invisible “friend”.  Constantly yammering at you in the distance, it’s just on the boundary of audible, making it difficult to hear other - real and visible - people talking.

The Icepick. This pain is very localized and feels remarkably like someone repeatedly stabbing you with an icepick. It is somewhat similar to the Ginsu in its clarity and sharpness, but does not have an identifiable cause. You don’t know when it is going away.  It can lead to the Tharn (see below).

The Medusa. In Greek mythology, Medusa was a beautiful woman who was turned into a snake-haired monster by the goddess Athena and became so terrible to behold that merely looking at her turned people into stone. The Medusa kind of pain often starts as a spasm in one location – say a shoulder – and then gradually spreads, until your entire body feels seized up and as rigid as stone.

The Jolt. This type of pain feels like jolts of electricity are shooting through your body, usually muscles or tendons. Rarely a small current, The Jolt can stop you in your tracks as a burning shock blazes through e.g., a particular tendon, only to leave as soon as it arrived, leaving no trace of its passing. One of the particularly “fun” types of fibro pain.

The Bee. This type of pain feels like an angry beehive has taken up residence in your body. Often associated with sciatica pain, your leg might feel as if it’s buzzing, with a top layer of burning and stinging.

The Tharn.  In Watership Down: A Novel, Richard Adams coined the word ‘tharn’ to describe the paralysis of rabbits being caught in the headlights. This type of pain has the same paralyzing effect – when it hits, the only thing you can do is sit, stand or lie perfectly still. Going Tharn makes it hard to breathe and can make you break into a sweat. It can last anywhere from 10 seconds to 10 minutes, but thankfully, rarely longer.

The White Noise. This happens when the pain becomes so pervasive that you cannot feel or hear anything else. It gives you an almost itchy, hyper-sensitive feeling in your ears.  You are not capable of doing much of anything. Even watching television hurts your ears and makes you dizzy, because there are too many types of stimulation assaulting you and you are unable to gather all the information into a coherent, seamless flow. The visual and auditory input become random lights and noises that hit your motion sickness and screaming place. In the White Noise, you can almost feel your eardrums vibrating.

The Silent, but Deadly. Painless pain.  Multicoloured stars in front of your eyes, frequently followed by fainting.


You can vote in the Canadian Blog Awards until tomorrow at noon. For me, if you like - yes, I'm shameless - or anyone else you think deserve it. And if you live in Toronto, please go vote. Smitherman ain't the best, but he's better that Rob Ford.

Friday, October 22, 2010

Come Rant With Me


I saw this article in The Guardian a while back and have been nursing a low-level seethe ever since. And now is the time to let it off the leash.

Shall we start with the headline?

Failure to Act on Early Signs of Rheumatoid Arthritis Could Prove Fatal! And already, my heart is in my throat. I'll say this for it - it gets your attention and gets you to read the article and that, I suppose, is the goal of most headlines. The sub headline (or whatever you call it) pronounces equally breathlessly that "specialist says rheumatoid arthritis can be halted or even reversed if treated early, but symptoms often ignored." And this is the point where that twitch by my right eye starts ticking away like the tail of an irritated squirrel.

The third paragraph tells us that a study found people to be untreated for an average of six months, the delay being primarily due to people not bothering their GP with minor aches and pain. Sure, there's something to that. We all try to suck up things that don't seem huge, maybe waiting until the next time we go to see the doctor for a sore throat or the annual physical to mention them. And why? A big part of the reason is that telling use of words in the paragraph above, mentioning people thinking the symptoms "too minor to trouble a GP with." Aside from the heinous act of ending a sentence with a preposition, this speaks volumes. I hear this again and again on MyRACentral. People don't want to "bother the doctor" or "interrupt the doctor’s busy day for some silly pain" and who teaches them that?

We live in a culture that values stoicism, but how many of us have gone to the doctor for something hard to define and been treated like a hypochondriac? And this, my dear journalist, especially happens to people who are developing conditions that present with confusing, sporadic symptoms at first, like RA. I cannot tell you how many times I’ve heard people talk about what a relief it is to finally get a diagnosis after months - or even years - of doctors telling them it's all in their head. Or their mother's - mine was dismissed and even sent to a psychiatrist for 5 years before I got a diagnosis and not much has changed in the past 4 decades.

However, according to the article, none of this is the fault of the doctors. Because doctors are apparently able to diagnose early RA with an accuracy rate exceeding 100%. If so, I don't know what they're teaching them in the UK, but they should come over here and give workshops. Because did I mention the thing about how early RA tends to be dismissed for months or even years? And I'm not even going to touch the description of RA as always starting in the knuckles and possibly the toe joints, because that's simply not true and forgive me, but I need to take a brief pause here to go bang my head against a wall.

Right. I'm back. And now we move on to paragraph #5, in which we learn that "[t]he condition does not just affect the joints. People with rheumatoid arthritis typically die 10 years younger from premature heart disease." And this is true - it's called the mortality gap. I apologize to anyone who didn't know that and who are currently hyperventilating into a paper bag. I did the same when I first heard about it. It’s a nice motivating factor to take really, really good care of yourself and to keep getting aggressive about treatment - the Biologics in particular have been shown to have an effect on the mortality gap (reg. req.). That particular sidetrack felt important to mention, but let me return to my rant. Because this particular detail of life with RA is mentioned in one paragraph and the other eight paragraphs are about something else entirely, but naturally they have chosen to use the terrifying factoid in the headline. It this responsible journalism? Given the tone (and title) of this post, you can probably guess that I don't think so. I get that you have to sell newspapers, I get that you have to get eyeballs to your website, I get that fear tactics might get some people to the doctor sooner, but if you're giving people a heart attack with your article, they'll never benefit from the information in it.

And perhaps I'm a complete milquetoast, showing my namby pamby social worker background, but I think scaring the crap out of people in the name of public education - at least on the surface, we know that the true motivation is to sell the damn paper - isn't ethical. Suggesting in the sub headline that early intervention can reverse the disease when the quote in the article is "[t]here is also a suggestion that if you intervene aggressively you might in a small proportion of people actually switch off the disease." And this is also true - it's very new research and it's very exciting, but it is so completely in the early stages that it is only a suggestion. However, The Guardian skips lightly over that and goes for the sensational.

Which brings me back to the frustrating-to-the-point-of-tearing-out-your-hair emphasis on the infallibility of doctors and the idiocy of regular folks, because apparently in The Guardian's universe - heavily influenced by some medical propaganda, I suspect - every GP will be able to immediately diagnose RA based on some vague symptoms and possibly inconclusive or negative blood tests. Except in reality, that’s usually when they kick you out of their office, making you feel bad for bothering them in a terribly busy day and/or like a hypochondriac because there is absolutely nothing wrong with you (I’ve heard of this happening even in the face of developing deformities). Guess what? There is something wrong and many GPs wouldn't know RA if it hit them in the face. But we are taught that doctors are infallible and The Guardian certainly joins in on the solidifying of that stereotype and this means that many people take their doctor's word for it, go home and don't go back to the doctor, don't push, don't get a second opinion because what their gut is telling them doesn't matter. Because they will be dismissed and made to feel like a hypochondriac and by the time they finally get a diagnosis, it is too late to turn off the disease and they likely have some degree of damage, lots of pain and a significant impact on their life.

And, as you may have guessed, it makes me mad. It infuriates me that doctors do not take their patients seriously, that many GPs (and rheumatologists, as well) don't know that blood tests aren't a definitive indicator of the presence or absence of RA and it saddens me to the point of crying that when faced with uncertainty or not knowing, instead of admitting that they don't know and referring to someone who might, so many doctors dismiss their patients. This is why RA is so often not diagnosed within a reasonable time. Lack of knowledge and arrogance.


You can still vote for The Seated View in the Canadian Blog Awards. Please also consider voting for Rolling Around in My Head, a very excellent blog.

Thursday, October 21, 2010

Knitting Back Together: Your Relationship and RA

Picking up on the relationship theme on MyRACentral:

"'Your illness is your family's illness.'
- Mea McNeil

When we make a commitment to someone we love, whether by formal vows or private promises, we hear that thing about it being for better or worse, but no one really expects the worse part. And then it happens anyway, one of you is diagnosed with a chronic illness like rheumatoid arthritis and you find that the words are not just theoretical, but real."

You can read the rest here.

Wednesday, October 20, 2010

In Which I Ask for Your Vote


I've been known to say that being Danish-Canadian gives me a double whammy of reticence and self effacement, so imagine I'm twisting myself into a pretzel as I'm writing thisl. However! I am apparently not self-effacing enough.

I'm nominated for the 2010 Canadian Blog Awards in the Best Chronic Illness Blog category. Should you feel that I deserve your endorsement, please consider casting your vote. You can access the categories here and supposedly, I should be able to embed the category here so you can vote without having to click around.  You can vote once every 24 hours until October 26.


It worked! 

As they used to say in the Bartles and Jaymes commercials, thank you for your support.


Two Leaves in a Fountain

Monday, October 18, 2010

The Wave


Three years ago, I read a book called The Devil's Teeth: A True Story of Obsession and Survival Among America's Great White Sharks by Susan Casey and I've just spent a good twenty minutes trying to find the post I wrote about it. Because it was an amazing book and I'm sure I would've posted a review of it, but apparently not. Huh. Anyway, read it. It's very, very good.

Casey has just published another book, this one also taking place in the aquatic realm. The Wave: In Pursuit of the Rogues, Freaks and Giants of the Ocean is about just that. Giant waves. It is also about quite a bit more. Anchored (!) by sections about surfing, more specifically Laird Hamilton, his friends and tow surfing, it is an exploration of really big waves. What creates them, what they can do and what you can do on them.

The Wave starts on board the RRS Discovery off the coast of Scotland in February 2000. Discovery is a research vessel and it was expected to be a normal venture into the North Sea. And then a bad storm happened, worse than what normally populates the North Sea in winter - and it can get pretty bad there - and for days, giant waves pummeled the ship. Somehow, through luck and skill, the ship made it home and the scientists later found out that all the instruments had functioned during the storm, measuring everything that happened. And this is how giant waves, previously thought to be legends, mythical tales unsupported by physics, were proven to exist.

How big does a wave have to be a giant wave? Anywhere from 60 feet and up past 100 feet. This is already enough to make me never want to go near water again and you know how much I like the ocean, but reading this book tugged at me. In an interview (video here), Casey said that she "wanted to write about the most powerful force in nature through the eyes of the people who understood the most." This means that she talked to the man - Laird Hamilton - who invented tow surfing and traveled around with him and his gang of big wave surfers. It means that Casey talked to scientists who study waves, to the salvagers who try to help ships caught in storms where the waves take over, putting the ship, its cargo and its crew in peril and to the insurance company Lloyd's of London that ensures everything maritime. As well as all kinds of weird things, but no longer two-headed albino rattlesnakes, because the last time they did, tragedy struck, described in the Lloyd's annals as "an apparent disagreement between the heads had fatal consequences." The book also contains a fascinating look at big wave history, recounting stories from the 1700s to the present about mysteriously disappearing ships (I'm never going on a cruise), about a native woman out collecting berries coming home to find her entire village razed to the ground, the dead hanging in the branches of trees and the 1958 tsunami in Lituya Bay, Alaska that measured upwards of 1700 feet. And that's the point where I (briefly) persuaded myself I'd never go near saltwater again. Especially as the photos in the middle of the book cover the gamut from ships breaking up in storms, to big waves to the remains of villages in the aftermath (for an idea, check out the video in this post on Gizmodo. Whoa, Nellie…)

I love Susan Casey's writing. She obviously has a deep love of the ocean and has a gift for painting with words, painting a picture so clearly that you can smell the salt in the air and feel the spray on your face. I have to admit that when I first started this book, I thought the tow surfers were certifiably insane, but as we follow the surfers in their private lives and traveling around the world to surf the big waves, you begin to see the point. Casey takes us on trips to different spots known for generating giant waves - like Mavericks in California and Jaws off Maui - and we learn, again through the surfers, how every place creates a different wave, that waves have different characters and you start to get it, start to understand through her description of the waves that they are living, breathing organisms, one mood being different from the next. And despite the insanity, at the end of the book, I almost wanted to go big wave surfing myself. Almost. I don't quite have enough wanton disregard for my own safety to do so (and besides, water is bad for the electronics on my wheelchair), but I very much want to go see it from the shore.

Inevitably, the book also talks about climate change. As our climate changes and the planet heats up, it is creating more extreme weather and that means more giant waves. It means that without taking this into consideration when we build ships, oil platforms and coastal settlements, we are pretty insane ourselves. And throughout the book, reading about the big wave surfers, it became so obvious that these people - questionable mental stability and all - have more understanding and respect for nature, for the ocean than the rest of us. They are up close and personal, connected to the water in a way the rest of us aren't and so are the scientists who study waves and the changes in the ocean. It’d be a good idea to listen to them, as well as to them, because he we don't, we're going to wake up one morning a whole lot closer to the water than we currently are. Obviously, I don't doubt that climate change is real, but this book had a way of presenting the evidence that might knock a few bricks off of the wall of even the staunchest climate change denier. As one of the scientists Casey interviewed said, "if we're proven right, it's too late." Good enough argument to have a safety net, I think.

I only had one minor quibble and that was wanting to know more about women who surf the big waves Casey – herself a surfer - gets there, but not until you're about three quarters through the book and then only briefly. But the book focuses on a specific group of surfers and they're all men, so in a way, when and where big wave female surfers appear in the book make sense - they get there when it's time. Still, I would like to know more. Perhaps she's saving it for the next book

None of my reviews are done until I get to the narrator and The Wave is narrated by a truly gifted reader, Kirsten Potter. Her use of inflection and nuance lent an added layer of emotion to what was already fantastic writing, taking this one into that rare place where the whole is more than the sum of its parts. When the parts are as good as this, it is a wonderful trip. I want to read this book again and only knowing that it'll be better in about a year or so keeps me from starting over on page 1 right now.

Do yourself a favor. Go on an adventure: buy this book.

Thursday, October 14, 2010

Dental Fashion Faux Pas


I was relaxing at the dentist yesterday (and yes, you’ve already mentioned that I’m weird). Anyway, I was relaxing with a mouth full of equipment, having my teeth cleaned in and enjoying a conversation about cats with Theresa - who’s a brilliant hygienist - and we got talking about the state of my mouth.

My dental health is a bit of an uphill struggle, what with RA-related difficulties in cleaning my teeth. Add to that a relatively recent battle to keep my gums from bleeding, something that appears to be impossible given that I'm on an immunosuppressant. Used to be that all I had to do was remember to floss for about three days and things went back to perfectly healthy, but my immune system is now suppressed so much that it's having trouble beating down the bacteria in my mouth, hence bleeding gums. Not something I ever expected as a consequence of taking Humira, but what are you gonna do…

However! This is not necessarily about terribly gross things and I apologize to those of you who snapped into a fetal position at the mention of the dentist and gums. There is good news - at the end of the appointment, my dentist said "this is the best I've seen your mouth in a long time" and I (and my bank account) was ecstatic to hear that.

But back to the point of this post. In between talking about cats, I asked Theresa how my mouth was looking and she said the gums were much better, the last time she'd seen me, the gums along the upper right quadrant had been "rolls".

Yes. She said rolls.

And this is the point where I started to laugh so hard there were tears. Blessedly, I didn't accidentally swallow any sharp instruments as a result, but once I could talk again, I asked:

"So what you're telling me is that my teeth had muffin tops?"

Does making yourself laugh until crying mean you’re a total dork?


Friday, October 08, 2010

12


Today marks my 12th day of work in a row with no break. Sure, my work day is probably about half of yours, divided into about three hours during the day and another 1-2 after dinner, but whenever I get frustrated about not being able to work more, I try to remember that duration matters less than drain on energy. Still, there's part of me that think the damn Book would be done by now if there wasn't all this other life that has to be dealt with. And resting. The resting really drives me nuts, although I'm getting better at trying to enjoy it.

Which isn't the point of this post at all, but I am fried to the states of being crispy and although I have several posts percolating, they all require brainpower, of which there is blessed little by now. Because did I mention the 12 days in a row? Working for yourself is great, except when your boss’ approach is informed by their opinion that a sweatshop owner bends over backwards for their workers.

Today is about getting ready for the long weekend - Canadian Thanksgiving is imminent and I plan to take all three days to do very little - and that means not just getting groceries, but also squeezing in some work. Probably less than I'd prefer, because the shoulder is starting to bitch and unless I listen, my three-day weekend is going to be spent healing and I have other plans. All revolving around doing nothing - or rather doing Nothing - and doing so with great enthusiasm.

And here's the interesting thing. Despite the rather intense pace around here for the last 12 days, my shoulder didn't really start complaining until yesterday. I was thinking about it the other day, wondering exactly what I've done that had so remarkably moved me from limping through the day with ice packs on my shoulder and a ready access to codeine to zooming through day after productive day. It took me a while, but I finally pinned it down to two things.

The first is that I gave myself permission to temporarily close down the browser tab open with my feed reader. When my computer time is spent primarily writing rather than browsing the Internet, my shoulder is really happy. Of course, it does squat for my sense of guilt about not keeping up with the blogs I love to read, so I'm going to have to find some sort of compromise down the road. And the second? I've gotten much better at listening to my body, dropping everything when my shoulder starts to make its presence known. Of course, this is easier when it feels well enough for me to Get A Lot Done, but it's a step in the right direction.

So this year, I'm thankful that I've finally started to learn the lesson, I'm thankful that my body has supported me through these last 12 days and I am very, very thankful that it's a long weekend.


Thursday, October 07, 2010

Adaptation: Learning to Live with RA


The change in seasons has prompted musings on life changes at MyRACentral:

"Life is what happens while you are busy making other plans.
-           John Lennon

No one ever plans for a chronic illness, writing down "develop rheumatoid arthritis" complete with hearts enthusiastically dotting the I’s on their list of things to accomplish in life. We plan for going to college, finding love, having kids, learning to speak a second language or play the guitar and mastering the art of perfect cinnamon toast. But medication, pain and fatigue? Definitely not on the short list."

You can read the rest of the post here.

Wednesday, October 06, 2010

Oh, Grow Up!


A couple of weeks ago, when I was being nice to my shoulder and not working, I was idly flipping channels, marveling at the dreck that is daytime TV and came upon The Doctors, a collection of alarmingly good-looking alleged medical professionals giving advice to the masses.

One of the doctors is a plastic surgeon, probably in his early 60s, with a healthy, youthful look and I'm sure that he'd intended himself to look like a really good for the services, except were I in the market for a facelift, I'd have asked for the name of his surgeon. Truly, it was amazing.

By the way…What is it with the doctor shows these days? There’s The Doctors, there's Dr. Oz and I'm sure there are others. Have medical shows supplanted judge shows and soap operas?

Anyway, in this particular episode they were zooming through quick mentions of small things that could help your health or not and one of the items under consideration was sex, which was pronounced something that would help your health in various ways. More specifically, the question asked by a member of the audience was how to get these benefits when celibate. Not to worry, said the OB/GYN, a frighteningly perfect-looking woman with tresses of long beautiful hair artfully cascading over her shoulders, a partner wasn't necessary to get these benefits. Dr. Ken Doll - I don't know his name, but he's obviously the main guy and I think he might have been The Bachelor once? - held forth about how they often talked about the health benefits of sex on the show and this is where everyone started to twist themselves into pretzels in order not to say the word masturbation. They may coy references to "helping yourself" and "flying solo" with much giggling and this is the point where I felt like smacking them all.

If you often talk about the health benefits of sex, why can you not say the word masturbation? And it can't be because at 3: 30 in the afternoon, The Children might be watching, because you are in the Army often talking about the health benefits of sex. How am I supposed to take them seriously as professionals who offer medical advice - stop laughing out there, just go with the supposition - if you cannot use the proper word for something you're just proclaimed a healthy, normal part of life. Your squirminess and discomfort at the mere word completely contradicts the statement that it's healthy and normal. What are you? Adolescents?

So I turned off the TV and went to have a nap instead.