Wednesday, March 31, 2010

Book Review: The Postmistress

Me and Audible have a routine. Every Tuesday, I place myself in front of my computer with a cup of tea and half an hour set aside for my weekly treat: perusing the new audio book releases. About a month or so ago, I saw a book called The Postmistress, checked the description, which sounded interesting enough in a vague sense that I clicked on the sample - after struggling through a few good books ruined by terrible narrators, I've learned to click the sample to avoid wasting my credits on something that's going to make my fillings hurt.

And I was captivated. 60 seconds of listening to Orlagh Cassidy narrating Sarah Blake's words made me hungry for more. Not the sort of "that sounds good, I'll get it and listen to it down the road" but the "I need to download this right now and start reading immediately". And the entire book was like that. Breathtaking.

The Postmistress is the story of three women at the start of World War II: Iris, the Postmistress in a small town in Massachusetts, Emma, the newlywed wife to the town's doctor who’s volunteering in London during the blitz and Frankie, a reporter for CBS, reporting the stories of the British surviving and dying during the blitz and eventually, stories from other areas of Europe. The lives of these women slowly intersect and get woven to the others, connections made before you quite know what is happening, each moment leaving to another, to decisions and actions, inexorably drawing them closer. Each woman makes a choice that comes to define her: Emma trying to keep her husband safe from the bombs by sheer force of will, Iris withholding a piece of mail with important information and Frankie trying to make the Americans listening to her reports understand how terrible it is in Europe, trying to make them come across the Atlantic to help.

It is also the story of the US at the beginning of the war, a nation unable to believe the stories coming from Europe, unwilling to join the fight, then slowly changing as the threat of Hitler's forces grows more personal. It is a story of the horror of war, from bombs to flight, large, defining events we've had learned of in history class made human, real and immediate by Blake's masterful drawing of tiny, heartrending moments. This is Blake's first novel, something that seems impossible considering her mastery of language, her deft use of words and phrases poetic and real, so breathtakingly beautiful I was stunned and awestruck at the same time as I was captivated by the story. This book is about what happens around the edges of a story, about the lives and people and moments that made up the war, bringing it home in a way I've never felt before, despite having heard and read and seen an awful lot about this time in our history.

This is a book that perfectly matches narrator to author, the beautiful language true to the era and so is Cassidy’s reading of them, catching the infection and cadence we know from 1940s movies. Together, the words and the voice paint images in your mind to go along with the story - and I'm not just saying that. This is the first time I've had an actual simultaneous movie running in my head as I was listening to the words, perfectly imagining what the characters look like, what the rooms were like - both as a whole and the tiny touches like how a photograph was placed - as well as the larger business, London in ruins, the dunes and the sea in Massachusetts, so real I could smell it. It was an experience so original and exciting that it was hard to face that the book was ending and I would have to let go of these people.

This beauty of a book is a quiet masterpiece, Blake’s use of language as precise and breathtaking to read as to look at a Monet in person and Cassidy’s narration attained a level of perfect I've rarely heard. Do yourself a favor and get the full treat in the audio book to experience the story first and then read it yourself a second time, so you have time to linger and appreciate each sentence.

Tuesday, March 30, 2010

Best Friends

Claire and Janne, when they were about 17. Today is Claire's birthday.

We miss you very much, love.

Monday, March 29, 2010

Random March

Pet rescue for the Rapture. No comment. Just… no comment. Sort of related, Ann Coulter’s people cancel one of her Canadian appearances due to a large protest outside the location, as it was "a threat to our safety". Don't these people know we're Canadian?? We may protest things, but we don't get violent. And for another bit of odd Americana, Donna Simpson wants to be the world's fattest woman and I don't even know where to start with that, so instead I'm going to move on to tips on how to avoid DST death.

Speaking of death, they found 51 beheaded Vikings when excavating a site for the 2012 Olympics in London which I find way more fascinating than the summer Olympics themselves. For an Olympic-sized ‘huh?’ check out this article about a man suing an outline because the flight attendants did not look at his scrotum, a fish with Olympic-sized muscles and an Olympic-sized conspiracy (OK, so the Olympics thing applied less and less as that sentence went on…).

After I read the Esquire article with Roger Ebert linked to in last month's Random post I found a mention of him being on Oprah, with links to the company that has made his communication device sound like him. Lots of really interesting samples of different dialects and accents. Every time I think I've reached the pinnacle of just how gobsmacked I can be by what computers can do, something new comes up.

And speaking of voices and accents, LynnM sent me this terrific link about what English sounds like to other people (take your time, listen to them all - they're fantastic) and Carrie sent me the Handsome Men's Club, which you should probably watch alone in order to not frighten others with the hysterical laughing. John/TinkPapa set me some truly astonishing paintings, as well as this one

Good to know that our image is starting to change from sweet and angelic to something a little more accurate. Trevor sent me the differently abled awning, plus a really terrific song that he originally heard on the BBC Ouch podcast. Imagine that - a song about autoimmune diseases, it's got a great beat and it's from Denmark (but sung in English, so have a listen)!

This month, David's contributions includes alternate titles of this year’s Oscar nominated movies, a pretty cute photobomb and speaking of the Olympics, to illustrate how close some of the events were (e.g. the 0.02 of a second in women's 1000m speed skating), don't try to visualize, listen to it. OK Go’s new and, really, really cool video and a wonderful blog written by Derek Lowe, a chemistry guy who devotes an entire section to things he won't work with for various and hilarious reasons - one of my early favorites is the one about FOOF, although the post on why you should not remove a pressure release valve is quite priceless, as well (and, it has pictures!). Another interesting man is Raj Patel, author and food activists, who has somehow been proclaimed the Messiah by a small, obscure cult. The article is terrific, but check out Patel's website, as well. Lots of food (!) for thought.

And completely and utterly random, an example of a substantial misunderstanding regarding what constitutes fun (possibly not entirely work-safe) and a rant about grammar, which is most definitely NSFW and contains some really foul language, so consider yourself warned.

And lastly, a brilliant performance by Gabrielle Bouliane at the 2009 Austin Poetry Slam. She is no longer with us, but if you have a dream you've put off or in general need a reminder to stop waiting, go listen. And then go follow your dream.

Friday, March 26, 2010

A Very Special Victim

I stopped watching Law & Order: Special Victims Unit a long time ago, after Twisty described it as Law & Order: Mutilated Women's Unit and just couldn't get that out of my head. Earlier this week, I happened to see the synopsis of the episodes broadcast Wednesday evening - it involved a woman with a disability getting attacked - and decided to give it a whirl. Y’know, to see how they dealt with it.

Yes, I know. I am a glutton for punishment. Hang onto something, there’s a rant coming…

The episode starts on a parallel transit bus, with a trainee driving and we see that the trainee is an amputee, one arm ending in some sort of hook prosthetic. Because apparently the creators of the show have somehow missed the developments in the field that allow for close-to-natural looking prosthetics.

Behind our trainee is the regular driver/trainer, who is spouting words of encouragement, including "just relax, you're a natural!" and is it just me or would you also question whether something quite so patronizing would be said to someone who had all four limbs intact?

They stop to pick up a woman, who is not, as she normally is, waiting on the sidewalk for the bus, so the trainee and the driver go up to her apartment to check on things. The apartment is beautifully decorated and shows no sign of anyone living in a wheelchair in it. Furniture is in the middle of the room, there's a nice arrangement with two couches facing each other and a coffee table between them and it's obvious that the makers of the show have not consulted the tiniest website about barrier-free design, nor have they even thought about what a wheelchair user’s apartment looks like (hint: furniture is likely placed up against the walls, in order to create space for the chair to move around and have access to aforementioned furniture, like a bookshelf or television). We see a beautiful woman in a white silk bathrobe sprawled on the floor, moaning.

In the next scene, detectives Benson and Stabler are walking along a hospital corridor with the doctor, who explains that the patient is "confined to wheelchair" and in the very next sentence, mentioned something about "chairbound patients" - I don't remember the rest, as I wasn't taping from the beginning (but hint: we are not confined or bound - the chair liberates; if we didn't have it, we would be confined to bed. Also? It's called person with a disability - we are actual people, not just vacant cripples). The doctor then mentions that the woman came in "without her diaper," so he did a rape kit while he was examining her and that they have to investigate. Benson and Stabler reply that they can't start an investigation without the woman requesting it – would this mean the doctor raped her a second time when doing a rape kit without asking her consent? - but the doctor insists, because she has severe MS, is a quadriplegic. B&S asks if she cannot speak, doctor agrees and at this point, I believe my blood pressure reached stratospheric levels. Shall we count the whys?

Just in that one scene, the character of the doctor twice uses completely inappropriate language about a person with a disability. He then goes on to explain that the woman wears a diaper - because all people with disabilities wear diapers, dontcha know - and simply because she has become a quadriplegic, this naturally means that she is incapable of speech or communicating her wishes in other ways. Apparently the makers of the show also remain completely oblivious to the existence of augmentative communication devices.

And all this was in the first two minutes.

About a week ago, Trevor sent me an excellent article about the media's approach to disability, including inappropriate language (with helpful suggestions for respectful, appropriate terms to use) and the neverending disability version of the Madonna-Whore dichotomy, namely that of Victim-Hero. And this episode of SVU is clearly about a Very Special special victim, short bus and all.

What bugs me is not creating a storyline about a woman with a disability being sexually assaulted, because it happens (to almost half of us), particularly from caregivers and quite frankly, I welcome a look at this, because it's not something regular folks like to think about (or are even aware of). However, what pushed me into a rage bordering on an apoplectic fit was the sheer laziness of the creators of this episode. No thought or research put into what a disability means, what adaptive equipment may be available, what the apartment of a woman who uses a wheelchair might look like and then, as the cherry on top, let's take away her voice, too, literally and figuratively, shall we? Because in addition to making her incapable of speech, we are also going to remove all personal power from this woman, denying her the simple right to communicate if she wants an investigation, because her physical disability naturally leaves her mentally incompetent, as well!

Excuse me. I have to go hit something.

(I watched the rest. It got marginally better)

David has finally been bitten by the blogging bug (oooh, the alliteration!) and has started The Longer Web. The mandate: scour the net for long, leisurely essays about life, the universe and everything. Check it out – it’s intriguing, teaches you stuff you never knew you wanted to know and is a lot of fun, too.

Wednesday, March 24, 2010

In Which We Discover I Am a Total Wuss

Not that we didn't know this already...

I used to like roller coasters, loved the release of tension, sheer terror, sense of being alive that came with a ride on a good one. And then when I was fairly young, my father took me on this old, rickety coaster made of wood (and possibly held together with chewing gum) that rattled and swayed unnervingly as we neared the top. It was my last roller coaster. I later took up watching horror movies for the exact same reason - the nudging of primal, lizard brain kind of emotions, tension and release and I always felt relaxed and invigorated after watching a good horror movie.

(Yes, I know that sounded a little dirty, but like I once opined, good horror is a lot like good sex. Today, though, it's about the former)

Sometime last year, I read a review in Entertainment Weekly about Dead Snow and have been waiting with bated breath for the DVD release. Although normally not a fan of zombie movies - with the exception of the brilliance that is Shaun of the Dead – I had to watch this one. Medical students, an isolated cabin in the mountains, lots of snow and Nazi zombies. Oh, and it's in Norwegian. Does it get any better than that??

The DVD finally arrived a couple weeks ago and I've been trying to make encourage David to watch it with me, but he has charmingly evaded this. Apparently, dude has forgotten that watching horror movies makes your beloved crawl all over you during tense moments. Or – sidetrack - it's more like the time when newly engaged, my father asked my mother why she didn't peel him grapes anymore, to which she replied "you don't set out bait for fish you've already caught". It's a family legend - I have no idea if it's true, but it ought to be. Anyway! There I was Sunday evening, gleefully clutching my rented copy of Dead Snow, a cup of hot tea and a snack, ready to settle in with the kind of good horror that also makes you laugh.

The tagline on the front of the movie below the title is Ein! Zwei! Die! and already, I was giggling. As well as randomly repeating it throughout the weekend with the best Teutonic accent I could manage, which was highly amusing to aforementioned coward boyfriend. The DVD menu plays Beethoven's Ode to Joy (again, gigglefest) and a minute and a half into the movie, I'd already jumped out of my chair once, which was closely followed by bursting out laughing.

And then… it got too much for me. This thing I decided to do after the Big Flare with not suppressing my feelings, being emotionally honest and open to the beauty of the world has had the unfortunate side effect of making me incapable of watching horror movies by myself. By minute 34 into the movie, I'd fast forwarded through two tense moments (none of which involved any actual visuals of zombies, brains or blood) and realized I simply couldn't watch the thing while it was dark outside. I think not having Mojo around made it harder, too - with her, I wasn't alone, but without her, the only possible explanation of that sense of someone else being in the apartment would be the Nazi zombies!, right? (reason #348 for getting another cat). So I turned it off, intending to finish it during daylight hours and despite this being two hours before I went to bed, I still had nightmares about the Nazi zombies.

Monday afternoon, I started the movie again and this time, I could watch without fast forwarding and was very happy I did - this seriously is one terrific movie. Classic horror formula, has some good tense moments, complete with occasionally screaming like a girl and laughing hysterically (often at the same time), but there's something about the Ein! Zwei! Die! aspect, with zombies dressed in neat SS uniforms and it all happening in Norwegian that takes it from standard into divine. Still, my Mandatory Rest Period was spent dreaming of…. you guessed it. Nazi zombies.

I am such a wuss. My younger self would be completely disgusted with this newly acquired lightweight nature.

Go rent Dead Snow. But you may want to consider watching it during the day.

Thursday, March 18, 2010

Pain Thresholds, Gender and More Ranting

A couple of weeks ago, in response to my rant about the medical literature talking about the alleged hyperalgesia (i.e., lower pain thresholds) in people living with RA, Carrie (sorry - forgot the link) asked a very good question. Namely whether it wasn’t a good thing to identify that RA appeared to lower your pain thresholds, because it would have implications for treatment to better deal with that pain. Good point. Except my concern is - and this would seem to be somewhat substantiated by literature reviewed by RA Warrior that got me ranting in the first place - that the impact on treatment is not towards treating this increased pain, but rather to dismiss it. As RA Warrior says, "[i]t is believed that they [people living with RA] perceive pain to be worse than 'actual pain'".

There's a multi-page rant just begging for attention in the assumption that you can measure somebody's “actual pain,” but I'm not going there today (and aren't you grateful for that?). Suffice it to say that pain specialists, who it could be argued know more about pain than perhaps your random researcher or GP does, reject the idea of pain existing in a vacuum, separate and physical only. We recently published a post from a pain specialist on MyRACentral and he states "pain can be thought of as a complex experience that encompasses sensation, emotion and cognition". It's why pain is better treated with pharmaceuticals plus other therapies like biofeedback, meditation, etc., rather than just painkillers alone.

Earlier this week, I read another post on our Chronic Pain site, written by Dr. Christine Lasich, also a pain specialist, specifically about women and pain. And I learned something very interesting. Namely that until the 1980s, "the FDA prohibited the participation of women in clinical drug trials". Shall we all take a brief pause to boggle at that?

And since I read that, the implications of this past ban on studying half of the population has zinged around in my mind. We know many women died – and still die - of misdiagnosed heart attacks because as far as medicine was concerned, the knowledge about the symptoms of heart attacks was based exclusively on the way they present in men. And then they discovered that the symptoms of a heart attack are different in women. So what happens to an area of knowledge - in this case how drugs work – that is tested only on men? Even if gender bias in such studies was eliminated 30 years ago (and alas, it wasn't), knowledge is built on previous knowledge, which is built on knowledge gained before that and if the previous knowledge did not include half of the population, how do we know how accurate our present knowledge about how drugs work is?

And here's another thing. Dr. Lasich talks about the "epidemic affecting primarily women, an epidemic of chronic, painful conditions with names like fibromyalgia and thoracic outlet syndrome" and although I hadn't heard of the latter, of the people living with fibromyalgia, 9 out of 10 are women. Ninety percent! And RA affects women twice as often as men. Another interesting fact I learned in that article is that "women respond to pain differently than men".

And this brings me back to the question regarding the validity of the studies that hold forth about hyperalgesia. Given that there is a lack of research specific to women in pain, given that women respond differently to pain than men do and given that many of the chronic illnesses that cause pain affect women more than men, is it possible that there is a gender difference within the studies that simply hasn't been measured and accounted for? That perhaps the "perceived pain" may not differ from "actual pain"? I mean, other than the fact that RA Warrior mentions other studies that didn't find a lower pain threshold in people living with RA and then there is the conclusions from pain specialists that perception of pain is what matters, not someone’s idea of “actual pain,” should we take another moment to boggle at the shortsightedness and tunnel vision of the research upon which such conclusions and thereby treatment are based?

Or lack of treatment, I should say. Because women still tend to be patted on the head and sent away when reporting pain. Or told it’s all in their head, because they’re “too sensitive or emotional” (Lasich). Compared to whom? Men? If there are gender differences within the population of people living with chronic pain and women react differently to medications due "to having different metabolisms, hormonal interactions and clearance rates," (Lasich) what implications does that have for treatment? How many women out there aren't being treated appropriately because their doctor approaches their medical care from a base of knowledge that's riddled with a built-in gender bias?

Wednesday, March 17, 2010

Taking the Reins

My new post for MyRACentral is up:

"Compliance. Following doctor's orders. The words make my teeth itch and not just because in addition to rheumatoid arthritis and fibromyalgia, I have a chronic case of you're-not-the-boss-of-me-itis."

The rest is

Monday, March 15, 2010

Friday, March 12, 2010

Two Steps Back

Me, two weeks ago: "it's amazing how much you can get done when you're trying not to think."

Me, 10 days ago: "I can't move."

It's been a bit of a year so far and the upshot of all the death, disease and disaster has been a rather intense level of activity on the work front, because it is truly amazing how much you can get done when you're avoiding paying attention to the aforementioned death, disease and disaster. Not surprisingly, however, this resulted in the ever present neck, shoulder and elbow problem repeatedly warning me that I ought to stop, but just look at the list! I replied and when it insisted that it would probably be a good idea to slow down right now, I retorted with... well, I didn't so much retort, as ignore. So my body called me a bitch and made me sit still.

In retrospect, spending my vacation being in so much pain I couldn't think wasn't exactly what I’d planned.

I got a steroid shot last Monday, sat around and whimpered for days, not even being able to listen to an audio book, because for some reason (extended stress-related clenching of teeth), my jaw had gotten involved and the pressure of the earphones on the ear and jaw area made everything else scream and it was just adding insult to the basket injury. Then I got my Humira shot this Monday and the combination of steroids and Humira all of a sudden kicked me into tolerable. There was a literal demarcation of before and after and as ever, it awes me. I went from everything screaming to an hour after the Humira entering my body, not feeling the pain. That's not to say I didn't have any, but I'd built the filters up so high that they nicely muffled pain that was merely speaking loudly instead of screaming.

Which means I'm back to getting some things done - and the pain is subsequently getting louder - but I'm trying very hard (yet again) to learn my lesson, do everything in 30 minute intervals, strictly limit my time at the computer and take frequent rests. And subsequently, making feeble headway on The List. I'm also trying very hard to be OK with that.

Three guesses on how well I'm taking it.

Tuesday, March 09, 2010

5 Year Plan

I was watching the Barbara Walters special before the Oscars - and can I just say how very awful the Academy Awards were this year? I'd rather have watched Rob Lowe dancing with Snow White for a couple of hours than watch that impersonal, rushed, yet dragging-into-eternity evening and where was I again? Oh yes, Barbara Walters. Between the bookend interviews of Monique and Sandra Bullock, she showed brief clips from all the Oscar specials she's done and I was surprised to realize how many of them I've seen.

Toward the end of the hour, Sandra Bullock turned the tables on Babs and asked one of her famous questions: "in five years, what do you want to have that you don't have now?". And it made me think. After the Big Flare (yes, I've finally relented and have started capitalizing it now), I didn't plan much beyond a day or two for a long time. Then my idea of “future” started increasing to a week, a month, a couple of months and recently, I made plans for January 2012. But years? I haven't thought that far. I've sort of reached the point where I hope I could plan into the future, but it was really interesting to find out that the thought of planning that far ahead makes me feel like I'm daring fate to come get me. The superstitious fear of jinxing this life I've somehow managed to grow persists...

But still, the thought percolated in my brain and I very quickly realized that all I want is what I have now. The people I love, doing the work that I love, living in the neighbourhood I love (and managing my RA with the Humira that I love). This life is exactly what I've always dreamed of and sure, I wouldn't mind having a bit more money, my debt paid off and all the specifics that we can always come up with when we start thinking details, but overall, this is it for me. Except for one thing. There is this one thing that I would very much like to have five years from now that I don't have now.

A book with my name on it.

There. I said it. I said it out loud, in public, in front of a lot of people. Not just quiet and small and to my nearest and dearest, but in print where it can't be changed.

I've dreamt of writing a book for as long as I can remember, even have a couple of starts on my hard drive, but energy restraints and the ebbs and flows of RA have kept me from giving it a serious go, from finishing. There's only so much I can do in a day and sitting down and writing nonstop for several hours after I've done everything else I need to do has not been possible.

But this moment in the last Barbara Walters special got me thinking about making plans further ahead than the rest of the year. It made me consider that maybe the drugs are so good now that it is possible to believe the idea that I will be okay for longer than the next few months or so. It might even be possible that I will be fine and able to work for several years. And just writing that makes me shake with anxiety that now I've put it out there, even the theoretical possibility of this, the universe is going to notice and make me sorry. But life's about no fear, isn’t it, about going out there and taking the big risk, because we only have this one life and not pursuing your dreams with everything you’ve got does you no favours. I figure (hope) that as long as I’m keeping it within the theoretical, the maybe possible, then perhaps the universe won’t think it requires active pouncing.

So. I've considered five years. And I've considered the one thing I would like to add to my life by that (okay, two things: maybe also a little less pain). It really shifts the way you look at your life when you're thinking more than just a couple of months down the road. Makes me think now that it's out there, in public, maybe I need to go create some time to do it. Theoretically, of course.

In five years, what do you want in your life that you don't have now?

Friday, March 05, 2010

Sweet Boredom

I can't remember the last time I had vacation.

Of course, it could be argued that when you're not working, you're perpetually on vacation, but it's not the same. Life fills up, regardless of what you do - or don’t do - and although you may lollygag for a few hours in an afternoon and be able to do so more often than when there's a job to go to, it's not vacation as such. It's just the way life is. Then I got a job and then the job expanded about a year ago and since then, aside from time dedicated to heal the latest injury, I haven't taken more than say, a long weekend where I've unplugged for work. The problem with this, I've discovered, is that it takes a good 2-3 days to get out of work mode, just in time for you to go back again.

A couple of weeks ago, LynnM sent me a link to a wonderful essay called La Vie D’Ennui by Colin Bisset about how enjoyable and - my interpretation - restorative boredom can be. Not the twitchy, I'll go crazy if I don't do something right now kind of boredom, but the one enjoyed by puttering around in long, lazy days, looking out the window at the rain, lying in the long grass on a summer afternoon, doing nothing to the point where your mind goes a little blank. "Perfect boredom is the enjoyment of the moment of stasis that comes between slowing down and speeding up" Bisset writes and goes on to talk about how these moments than being bored are also the moments where you start wondering, giving your imagination free reign and once freed of structure and expectation, it makes leaps and takes wing. It's no coincidence that Newton came up with the idea of gravity when sitting under an apple tree, is it?

In my life, those moments occur on the toilet. Seriously. It's the only time where I'm not actively involved in doing something, done with one thing and thinking about the next or drooling in exhaustion in front of the TV. Not coincidentally, it’s also on the throne that I get really good ideas. I don't spend a lot of time there - have this moved into TMI territory yet? - but just a few minutes of staring at the pattern on my rag-painted wall, seeing the chimpanzee there, the dog here, the line of waltzing couples above the baseboards, poufy gowns billowing as they swirl to silent music, unplugs my brain from the neverending buzzing to the place where the deeper parts burble up ideas. And then I go back to work, make a note of all these great ideas, but never actually have time or energy to do anything about them.

Except now. Because I'm on vacation, have been since yesterday morning and plan to do sweet nothing for days, perhaps only interrupted by writing things, thoughtful, whimsical or just plain idiotic, that I want to write. Nothing for work, nothing for the various volunteer things, nothing for anyone but me (the blog may get something, may get just photos, who knows…). I've set it up, let everybody know I'm on vacation - not going anywhere, but not available, either - and several times in the past 24 hours caught myself saying "I'll just send so-and-so in e-mail" or "I’ll give them a call tomorrow" only to take a deep breath and follow it with "no I won't, I'm on vacation. I'll get to it next Thursday". It's quite liberating. Difficult, too - when your office is right in your bedroom, is really hard not to click on that link that’ll take you to the latest comment that needs a reply or answer that e-mail, but I'll keep trying and somehow, to be honest, it's becoming less difficult. That moment of letting go, the active dropping of one thing, deliberately putting the other thing on the shelf for a week is making me sort of giddy. Haven't started writing anything yet - I'm still beating down the part of me that thinks I should be working because then there'll be less to do when I go back to work next week, but she's increasingly rolling over, giggling madly and any minute now, I think she'll start saying these things just for the dizzying joy in flinging it all back up in the air and not caring where it falls.

I can't wait to get bored.

Thursday, March 04, 2010

Death & Life

This month on MyRACentral, we talk about death and dying, the unmentionable:

"Twice, rheumatoid arthritis has tried to kill me.

I was 12, almost 13, the first time, when it went systemic and starting attacking my heart and my spleen and there was a bad case of pneumonia, as well. I don't remember much, just moments of memory, strung together with wide spaces in between. Waking up to see my father sitting by my bed, elbows on his knees, looking down on the floor and then falling into sleep again. The daily chest x-ray, barely able to sit on my own for the 30 seconds before the nurse came back into the room to help me. Surreal interactions with people I didn't know that in retrospect was a fever delirium. And afterwards, learning to walk again, trying to pull myself up two steps in the physiotherapy department, weak as a kitten."

You can read the rest here.

Monday, March 01, 2010

Validity, Perception & Pain

A little while ago, Rheumatoid Arthritis Warrior (great name for a blog) posted a fantastic rant about the "well-established fact" that people who have RA have lower pain thresholds and that "they worsen the perception of a pain through their 'maladaptive responses'" to their pain. Apparently, the medical literature has very decided opinions about the way other people experience pain.

One of these so-called maladaptive responses to pain is called catastrophizing and can be illustrated by the person agreeing to the statement that "I worry all the time about whether it will end".

Really? That's catastrophizing?

Actually, let me allow some space for my initial response. Which was a deep, weary sigh.

Okay. After the signing made the curtains flutter, I am now ready to rant on. Because, my dear physicians and medical researchers, worrying about whether the pain of rheumatoid arthritis will end is actually pretty normal response to a disease that is relentless, that makes your entire body feel as if it's covered in a damp, lead-lined comforter, that is completely unpredictable to the point where you can't really make plans and expect to be able to follow through, because maybe on that day, you'll wake up in so much pain that you end up crying in the shower. Even when RA is controlled, we all know that it could end tomorrow, either because you develop side effects to the medication or it just decides to stop working. RA is for life, this is what the chronic part of having a chronic disease means. There is no cure, there is only medication that can suppress your symptoms for a while and they come with pretty serious side effects, so you have to decide whether your life is worth taking the risk and when you are carrying around a damp, lead-lined comforter every day, it often becomes a no-brainer to risk heart attack, stroke, cancer, fatal infections and the like and does that not indicate just how crappy life with RA is?

And here's the other thing. Does not the fact that only medication that has such extreme effects, medication that will suppress your immune system making you more vulnerable to contagion and infection indicate that this is a fairly intense disease? And does the prescribing of these medications by rheumatologists not indicate that they take the necessity of controlling this disease fairly seriously? So am I the only one who thinks this sort of incongruous that on one hand, appropriate treatment for it this disease requires drugs so big that they have really serious side effects, yet on the other hand, people living with the disease are thought to be responding poorly to the pain, thereby making the perception of that pain worse? Can you have it both ways? Can you on the one hand be suspicious of an individual's report of pain, yet in the next moment prescribe a drug that pounds down the immune system because that's the only way you can control the disease?

And this is just another incident of the arrogance of the healthy, the one that's expressed in suspicion of pain and reports of pain, because since we can't actually see the bone sticking out of somebody's leg, it can't possibly be as bad as people say, can it? Kind of explains why so many doctors are so reluctant to prescribe pain meds. If the professional literature says that your patients actually have less pain than they report, why would you believe the words of the person who actually lives with the disease?

Pain is unimaginable when you haven't had it - just as the pain of a broken leg is unfathomable to someone who's never had a fracture, the pain of RA may be described, but can never be understood unless you have lived inside of it. Because RA pain is not just pain, it is a sense of weakness that makes it feel as if your arm weighs 10 kg more than it used to, it is a pervasive sense of unwellness, an indescribable "something's not right" feeling and then there is the dampness that suffuses every part of you, that weighs you down and makes you move more slowly, not just because you are being careful because of the pain, but because moving with that level of damp in your body slows things down. And when you know that this is your life until the end of your days, that even if it is controlled and you feel healthy and undamp, every day, you are a hair’s breath away from it all coming back and I am sorry, oh pantheon of medical godlings, worrying that it will never go away is not a maladaptive response. It is bloody well a complete valid response, nay, even normal.