The Foggy, Foggy Dew

A Beginner's Guide to RA: Workin’ for a Living

Building reference areas over at HealthCentral:

"Work is important, especially when you have a chronic disease. Your rheumatoid arthritis may change how you live your life, adding an impressive list of medications to your daily "diet," making everything from getting dressed to making coffee more complicated and require compromises in your social activities, your sleep schedule and your sex life, but going to work is a welcome dose of normal. It pays the bills, sure, but also reminds you that underneath it all, you're still the same person. So, we keep going out there, until we absolutely can't."

The rest of the psot is here.

Johs

Forty years ago, when AB and I became best friends we also adopted each other's families on her side, that meant her dad Johs, mom Ebba and younger sister KL (who I may have mentioned we harassed mercilessly - forgot the link, sorry). They became a sort of second family to me, an extended safety net of people who felt like home.

My family and they both lived in an area with tiny, one-story rowhouses and I was ever fascinated by their version on another street, because it had two stories on the back, being built on a hill. They had a bathtub where we had a shower, although the tub was the type you sit in, a tiny enclosed chair of sorts squeezed into the end of an equally tiny bathroom. Their house was arraigned slightly differently than ours and Ebba and Johs had redecorated, putting up a wall where previously none was to allow for AB and KL to have their own rooms, which left their parents with a rather small room to themselves and very little privacy and even as a child, I was aware of the sacrifices they were willing to make for their beloved daughters.

Johs and Ebba were wonderful, gentle people who raised equally wonderful, gentle daughters. In all the years I've known them, I've never heard them raise their voice to each other, which was an interesting contrast to my house where things were passionate, in-your-face opinionated and debate often a bit loud. At AB’s house, things were done differently, quietly, subtly and gently. And just as gently, they opened their home and hearts to me, including me in their afternoon meal after we came home from school, comforting me when I was upset over some childhood problem, teaching me about houseplants, making lace - Ebba did beautiful work - it's older than tatting, involves a board and is very complicated (the link’s in Danish, I have no idea what it's called in English, click on Billeder to see photos) and brought me to their cottage by Roskilde Fjord. It was tiny, too, and when I was there, AB and I slept in the attic room with the view of the fjord. Some of my favorite memories of childhood took place in that cottage and on the water and always, Johs and Ebba were there, a safe and solid buffer between us and the hard edges of the world. And when we grew up in my family moved to Canada, that connection continued. We always saw them when we went home to visit and danced with them at AB and Bjarke’s wedding, which was also the christening of their first adored grandchild Camilla. The second, Christoffer, arrived two years after that and just last year, KL and Jens had a daughter, Sophie, and Johs was, as ever, over the moon in love - a love that also extended to the four-legged grandchildren.

Johs has been sick for several years, deteriorating along the same path as my father's before him and last year, Ebba could no longer take care of him at home and he moved into a nursing home. 2008 was an important year with the birth of Sophie, Camilla’s confirmation and the traditional Christmas at AB’s. He was there for all of the big occasions, at times had to leave early, but he was there and that was the important thing. As the new year came, he got worse and we have been preparing to see him go. And this Sunday afternoon, a little after 2 o’clock Danish time, he did, surrounded by the voices and touch of Ebba, AB and KL, sending him into the hereafter with words of love. It is a blessing for he was clearly ready and is now at peace, but he will be greatly missed on both sides of the Atlantic.

Photo by AB

Random February

Starting off with a few items filed under the category of "things that make you go huh".

I was watching Bones the other day - and wasn't this weeks episode awesome? - and at the end of every commercial break, we get The Warning: "this episode may content graphic forensic content, viewer discretion advised." Right. The shows is called Bones… main character is a forensic anthropologist… ya think on the graphic forensic content??

And while we're on things that happen on my television screen. I've also recently watched The Great Escape and it reminded me of something that confused me for years. The RAF side cap which is a fantastic uniform accessory, making the whole thing seem very heroic and jaunty and very, very British, except …. so it's perched askew right above the ear on the side of the head (example here). How on earth did it stay on??? (as an aside, you can buy them here and a selling point is the “itchy scratchy fabric!”)

I checked out the Weather Network on Friday to see how much snow we begin on the weekend and they said if you flurries. Then, on the very next screen showing details on precipitation, it said "close to 10 cm". I don't think that word means what you think it means...

On through the link-o-rama. First up, I celebration of Dubya’s exit, a real ad from Australia. And staying within politics, from DavidG, one of the best (and saddest) editorial cartoons I’ve ever seen . Made me need a very long moment of quiet grief.

Hard to segue off that, so I'm not even going to try. Trevor sent me a clip about the Internet in 1981 (you've come a long way, baby), the Canadian quiz, a new report about a truly brilliant hack and the best condom commercial ever.

I forget who sent me this little clip about a German coast guard trainee, but I laughed for days. Ken retaliated with a standoff between the U.S. Navy and a very calm Irish voice.

Apparently, today's all about the uniforms, because LynnM sent me this virtual pilot. This displays my first score and I don't want to talk about how obsessed I've been since.

I forget how I found this link to the fastest growing sport in Norway. There’s a rumour out there that Scandinavians are a perpetually suicidal bunch and… well. I believe this is proof.

On the musical front, Another Outspoken Female posted this rather wonderful antidote of sorts to the song that shall not be mentioned and I recently found It Happens by Sugarland and it was rated made to finally get off my arse and get one of their albums.

And last, to leave you transported by breathtaking beauty… I recently watched a documentary called the Wild Horses of Sable Island in which a photographer by the name of Roberto Dutesco went to Sable Island to photograph the wild horses there. The images are out of this world. This is his gallery - and I call myself a photographer? - that has other beautiful images, but I'm stuck on the ones from Sable Island, so captivated that I'm pretty sure I'll be sending them an e-mail to inquire about prices of the small print. You can also see clips from the documentary on the site. And one more about horses… Mary sent me this clip of a dancing horse. Take your breath away.

Mass Hysteria

A couple of months ago, there was a bit of a thing when someone said that the concern about nuts and nut-free zones was showing all signs of flirting with mass hysteria. Dr. Nicholas Christakis, who himself allergic to nuts, was quoted as saying that the efforts of schools to declare themselves completely nut-free, including banning nuts and peanut butter from the school, as well as homemade goods and foods without detailed ingredient labels were a "gross overreaction to the magnitude of the threat". Comparatively, the 150 people who die of food allergies and 2000 hospitalized patients due to food allergies every year in the US are a tiny amount compared to say, brain injuries acquired while playing sports, car accidents, etc. And it's possible that we're not all as allergic as we think - just recently, I read an article (I forget where exactly) about how children who’d been diagnosed through allergy tests with e.g., six food allergies requiring a diet free of such allergens had been tested by exposure - i.e. come into a doctor's office, eat the food, see what happens - and it was found that on average, the actual food allergies tended to be about half of what had been identified. And yes, it's entirely possible that exposure to nut dust will generally only cause extreme reactions in certain rare situations (more on that here), but here's the thing...

I am allergic to nuts (and other things on a long, long list). Not peanuts, as far as I know, but tree nuts, specifically Northern tree nuts like walnuts and hazelnuts - as I used to adore these kinds of nuts, I think it particularly cruel - and again, as far as I know, not allergic enough that I can't go by the bulk container of the things. Except you never know, do you? It’s entirely possible that my next exposure to nuts will cause a much more severe reaction than the last one I had. And as a person whom the little buggers could kill, I appreciate nut-free zones. Knowing that I don't have to be alert and on the lookout at all times is very relaxing. Knowing I won't have to run that internal assessment about how close am I to the nuts, whether that's too close, what if this is the time that being next to the nuts is going to mean I need to grab my EpiPen because my throat is closing up is very relaxing (I don't spend every moment in a state of panic, but the thing does run in the back of your mind). Knowing that every food on the premises is safe for me to eat is beyond relaxing. And I bet it's relaxing for parents, too, to know that they can send their kid to school without worrying that they'll get a call to meet their child at the hospital. Or worse.

I was diagnosed with a nut allergy about 10 years ago and it changed how I ate. Or rather, didn’t eat. Not only did I have to go cold turkey on nuts, I also had to start obsessively reading ingredient labels. Because if something has been made in an environment that contain nuts, I couldn't eat it. I haven't had really good bread in a decade because all the really good bread tends to be baked on equipment that's also been used to bake things with nuts. I haven't had garlic bread in a decade, I haven't had a croissant in longer than I care to think about and I never eat birthday cake. I don't eat ice cream anymore, although very occasionally, if I'm with people I trust to act appropriately should they need to (because we've had a training session with the EpiPen), I have had a small taste of their ice cream. Until very recently, I hadn’t had more than the occasional cookies in years and my only choice for chocolate is Nestlé's quartet of nut-free products (Kit Kat, Smarties, Coffee Crisp and Aero) and let me tell you, that ain't chocolate. In the last couple of years, really good chocolate - like sinfully dark chocolate with tiny bits of orange crunch - has become way more prevalent in North America and I can't have any of it. There is Vermont NutFree and they do good chocolate, but seriously. If I want a piece of good chocolate I have to send away to another country for it?

And it's changing. The "mass hysteria" is creating a demand in the market to which manufacturers are responding. Most, possibly all, of Dare’s products bear a notice on the packaging that it’s manufactured in a nut-free facility and this means I can have crackers again. It means that when I look at the wall of packages in the cookie aisle, I can zero in on Dare’s logo and know that there is a really good chance I'm going to be able to eat those cookies (although I still check the labels obsessively). The mass hysteria has served a purpose. It has allowed people like me to buy products in the grocery store instead of e.g., the specialty food store at the Hospital for Sick Children and it has vastly expanded the amount of products I can now eat without worrying about anaphylaxis. The mass hysteria has increased awareness to such a point that I've heard of a restaurant that is completely nut-free, there are bakeries that are nut-free (okay, so primarily not nut-free, but it still works and one of these days, I hope they open one near me) and it has opened up the world a little bit more than it was.

We who are allergic to nuts may be a minority and a tiny one at that and maybe it isn't as dangerous as all that most of the time, but I bet that most people would appreciate knowing 100% that a) you can accept a cookie from your host; b) you won't have to go into a long explanation about why you can't eat the cookie because if you keep rejecting what's offered, your host might get their feelings hurt (or discreetly throw it out when no one’s looking); and c) when you bite into the cookie, it won't put you a life-threatening anaphylaxis. Just as despite only a relatively small percentage of the population requires ramps, contrast color outlines, visible firealarms, etc., we as a society has determined that accessibility is important enough that we allow for it in that legislation. Because we are a society that have decided we want to be inclusive, rather that exclusive and as such, the majority make concession to the minority. Let's not forget that at the beginning of all social change movements, whether it be civil rights, access or gender equality, the people leading that movement were often considered unreasonable and well, more than a little nuts.

But the results mean something. Thank god for mass hysteria.

No Longer Lost

I've been a Lost fan since the first episode, compelled and captured by the action, the ensemble cast, the interlacing stories only partially explained in flashbacks, the struggle between the rational and faith represented in Jack Shepard and John Locke (and since Jack has always irritated the crap out of me, Locke won by default. He is also sexier than Jack, who to me at least, has the sex appeal of a wrung-out dishrag) and although I've more than occasionally wished for it is a bit more lighting of the night scenes because I can't see what's going on, even that just added to the charm. I've loved that they're not afraid to kill people (although I wasn't a fan of Nikki and Paolo’s demise - it seemed unnecessarily mean and cruel), I’ve loved the mysterious plane, Jacob's cabin, Ben, Juliet and the Others, Sawyer wandering around without a shirt, all bad boy in need of a good woman to love him and the Smoke Monster. Let's not forget the Smoke Monster. Thoroughly chilling. I've loved that we have no idea what's going on, although it's been fun to try to figure it out, I've loved that it's taken its time, brought back story telling - true storytelling - to television and I've even loved the frustration that happens every time we get one answer, which inevitably brings up another half dozen questions. And then last season when they started with flashforwards, I was captivated yet again and let's just say it's been a terrific ride. There have been times I questioned my dedication, thought briefly of wandering off because it was getting a bit much and then they'd hook me again with some new development.

Until this season. I'm disenchanted.

To be fair, over the last couple of years, I've become increasingly disenchanted with television in general. I don't know if I all of a sudden hit a certain maturity level or maybe it was television that hit a certain immaturity level, but I've become pickier about how I want to spend my time in the evening. Less accepting of crap, bad writing or ridiculous acting (hello Horatio) and would rather read, write or watch a movie. And because I work in evening (have to chop my workday into two, part morning and part evening, to prevent injury), I frequently find myself in a position where it takes me 2-3 days to watch a movie and I'm forever behind on programs I've taped (because I try to avoid watching TV live as commercials infuriate me) and… long story short, over the past couple of years, I've been dropping TV shows every season by twos and threes and by now, there's very little left.

Which brings me back to Lost. I was completely addicted last season and beyond upset that we'd have to wait until January 09 to see what happened next and it turns out that by January 09, I didn't care so much anymore. But I still tuned in and I don't know if it's because it's rather Jack and Kate heavy or the extended absence has enabled me to look more closely at the show, but I'm not so charmed anymore. In fact, I'm downright annoyed. Because is it just me or does the pace seem to have slowed down even more? It seems to me that they've adopted the Y&R school of conveying Meaning by having characters stare portentously into the middle distance while the camera zooms in so close you can count their nose hairs and then they hold that pose, seemingly not even breathing, for what feels like half an hour before they cut to commercial and it makes me want to scream at the TV. Move. It. Along! The bleedin' show would've hit its final episode by now if they didn't linger so excessively! And maybe it's because the episodes have been a thoroughly confusing, so confusing that it's taken me until last week's show to begin to figure out what's going on and despite Sawyer wandering around shirtless in a scruffy beard for about 80% of the season so far, I'm sure there's a still photo of him somewhere on the Internet that will give me the same experience. Without the frustration. Without having to count nosehair. And without wanting to slap Jack senseless whenever he self-importantly comes onto my television screen breathing though his nose and what happened to Sun’s acting ability and where’s the dog and good lord, I hope Michael doesn’t come back and the only truly fun thing about last week’s show was the Smoke Monster and...

In other words, I believe I'm done.

Family Day

This is the second Family Day long weekend (it was invented last year) and we did just that. Spent time with family. Although based on the photos, you'd think there were no adults there.

For Morgan, one of the highlights of lunch at mormor's (Danish for grandma) is french stick with butter.


Liam liked sitting in a big chair


Scott finally let me take his picture


Hanging out at the balcony door


A long weekend. In the middle of February. Ahhhh....

S M R T

When my fibromyalgia first appeared in a noticeable way about five years ago, I thought I was losing my mind. Weird words started showing up in my documents, words completely unrelated to what I was writing and I had no idea how they got there. I had typed tiger and what showed up was filing cabinet. It was terrifying. Aside from the pain, which was unlike pain I'd ever experienced before, the mental aspects of fibromyalgia changed who I was.

I used to be pretty smart - is it okay to say that or does it make me sound like a conceited arse? - and now my concentration isn't that great. I used to have a memory like a steel trap and now it's like a steel sieve. My mind used to be nimble and now it feels more like molasses in January. I once asked my doctor how we'd know if I ever got Alzheimer's and was only half-joking. She claimed she’d notice. I choose to believe her.

Someone told me that fibromyalgia makes your pain receptors overreact for everything and that's why pressure can feel like you're being cut with a knife. I’ve learned that it’s not just my pain receptors that are wide open all the time, it's everything else. My hearing is more sensitive, as is my sight and I react stronger to medications than other people. Essentially, my body's having pervasive hysterics and the goal is to keep the internal noise level down, preventing it from reaching full blaring level. It wasn't until I got fibro that I started referring to pain as being something that could be loud. The din makes it hard to focus on more than one thing at a time and it’s why weird words came into what I was writing - I'd be writing about tigers, but have a quick thought about needing to clean up my filing cabinet et voilà, it muscled other words out of the way. By now, I know it's one of the warning signs that I'm flaring, but as long as things are relatively under control, these days, most of the creative verbiage is Dragon's fault.

It's not something I talk about. It's not something anyone really talks about. Talking about pain is one thing, but admitting that your brain isn't as nimble as it used to be? That's sort of shameful, isn't it? If there’s a stigma surrounding physical impairment, there's an even bigger one when it comes to your cognitive function. Just writing that, putting cognitive function out there as something that isn't as quick as it used to be makes me a bit nauseous and think about posting something fluffy instead.

They call it fibro fog for a reason. The knowledge is still in there (at least, I hope it is), but finding it is like trying to find your way in a thick fog. All known landmarks are gone, you can't see the path in front of you or where it turns and despite being somewhere you know, the fog has made it all alien and strange, so strange that it takes you forever to find what used to be right there. This weekend, it took me almost a full day to remember the name of the Italian dictator during World War II - I thought it started with a B, but it didn't feel right (I was looking for the last name) and it wasn't until I passed my video store and remembered that movie that it came to me. And then I realized my brain had dug up the first initial, but left the last name behind in the fog.

Pain - all pain, not just fibro pain - messes with how your brain works, because when your mind is busy dealing with pain, there's only so much focus left over for the rest of the world. Add the fibro fog, plus the fuzziness that comes from the codeine and muscle relaxants necessary to keep things down to a dull roar and there are days where I'm just happy I can remember my name. I hear menopause brings forgetfulness, too. I can't wait. It'll be just a riot.

There are people out there who are questioning the "validity" of fibromyalgia yet again and that's why I'm coming out about the fog - it feels important to write about how very real this condition is. Because sometime last year, when I saw the commercial for Lyrica specifically identified as being for fibro, I almost cried because it was something I could point to as proof of the reality of this disease (it doesn't get more real than the pharmaceutical companies trying to make money from it). Because after years of spending every day in a disease many in the medical profession don't believe in - it's not a religion, people! It’s not something you can “believe in” - the fact that there are now several medications approved for use in fibromyalgia is a welcome piece of evidence on our side.

Ch-ch-changes

This week, I'm having a bit of a rant about compromises over at HealthCentral:

"Splints for your wrists
A cane to lean on
Orthopedic shoes that have room for swollen ankles and aching toes
Loose clothes that’s easier to put on

When you first get diagnosed with rheumatoid arthritis, no one tells you this disease may require equipment that’ll make you stand out in a crowd and not the kind of standing out that happens when you're wearing a pair of really sexy shoes. They don’t tell you this equipment looks like it belongs in a hospital and there is no handy list of shops with fashionable clothes for people who have trouble with buttons."

The rest of the posts is here.

Cone in Snow

More Follicular Blogfodder

The hair continues to provide moments too good not to share. First there was the Badness, then the improvement and now...

I could pad this, could write a lot of words leading up to what this post is really about, but too many words would take away from the sublime ridiculousness of the moment. And besides, my shoulder still has loud and decided opinions about what I do and what I shouldn't do (spending time at the computer remains high on the latter list), so here goes.

I went to the market on Friday, as I do most Fridays, to get my weekend grocery shopping done away from the hordes that invade the place on Saturdays. Among other things, I stopped by the butcher for my weekly dose of kielbasa. As I'm paying, the following exchange takes place (butcher staff identified by initial only to protect her anonymity)

R: I like your hair.
Me (happily, because I really like it, too): thanks!
R: you look pretty now!
Me: ………?

For Alison

Yesterday, AlisonH came home after a harrowing experience leading to a hospital stay. A little lighter (I wonder how much a colon weighs?), but much healthier. And alive. Let's not forget alive. Welcome home, my friend. It's a good day.

Attempting Maturity

After a couple months of doing really, really well, to the point where taking painkillers made me stoned because they didn't have any pain to deal with (and hence, I had a lovely, yet very freaky period of time in which I took hardly any – freaky because they’re as much part of my daily 'diet' as breakfast), I aggravated the injury/permanent state of affairs in my right shoulder a few weeks ago and have been reducing my activity level somewhat to allow it to heal.

Which it hasn't, instead getting more and more pissy with me. So I tried to accommodate it. A week ago, I put a ban on typing (which in actuality meant a 70% decrease in typing), increased the painkillers drastically and kept going at a reduced pace. Which means I didn’t work in the evening. Much, anyway. I had a vague sense that I probably ought to take a week off to heal, but I had things to do.

(Stop rolling your eyes and doing that sighing thing. I can hear you, you know!)

Not surprisingly, this made things worse, especially since the blasted injury decided that it wanted company and nudged my fibromyalgia to bloom into a full-fledged fibro flare. Having managed to keep things from the brink for a while now, I’d forgotten what it's like when it's really testy. Last weekend, I described my pain levels as "interesting" and throughout the week that followed, things got progressively a bit more wrecked every evening to the point where this past weekend, the pain levels were downright fascinating. I mean, it hurt to breathe - that's pretty gripping. And then two things happened.

Thing the first: someone asked how I was doing with my injury with a real note of concern in her voice and I started crying. After I'd gotten a grip, I remembered that reaching the point where I go around telling people not to be nice to me because it’ll make me lose my composure like this

Person X: I'm so sorry you're having a rough time.
Me (blubbering): don't be nice to me!
Person X: bitch.
Me: thank you.

is usually an indication things are really, really bad.

Thing the second: as I'm preparing to listen to my body and take a couple of days off by writing a highly shortened list entitled "I just have to do these few things before I stop" there was a moment with an almost audible sound of needle dragged across a record combined with a sudden illumination of a lightbulb atop my head (good thing I only share my home with a cat or these kind of moments might raise a few eyebrows. The cat ignores ‘em). Because that's exactly how I got this injury/permanent state of affairs last year. I did "just a few more things" and come to think of it, that's pretty much how I acquire a good 90 % of my injuries and… that's the point where I stopped. Instantly. To hell with the list, I'm stopping now because I know what comes next. For the first time in my life, I'm listening to my body scream at me while things are merely Very Bad and stopping before they reach Catastrophic which inevitably requires me to sit still and heal for weeks on end and who the hell has time for that?

I intend to spend the remainder of the week covered in icepacks, drugged to the gills, reading, watching old movies and communicating solely by telephone. Might even attempt to keep the computer off part of the time (OK, there are a few must-dos, but I’m re-defining what constitutes a ‘must’).

Will you look at that…. Me, listening to my body. I'm sort of impressed with myself.

4th Annual Bloggers (Silent) Poetry Reading

Today is the Feast of St. Brigid (as well as Imbloc and Groundhog Day) and that means it's time for the annual poetry celebration. The first year, I posted Pablo Neruda, the second I sort of forgot - although I'll argue that this picture is a visual poem, a paean to sunshine in the depths of winter - and last year, it was Thomas Traherne. This year, I've decided to post one of my own. Worthwhile Endeavors first appeared in Borderlines.

Worthwhile Endeavors

I don't work
well, not for pay anyway
I cannot work (for pay)
I lost my ability to work (for pay) years ago
a disability can do that
mess with your ability to do things

What use am I if I cannot work (for pay)?
in this world, what use are any of us if there’s no employment to go to?

You don't work (for pay)?
What happened to your spine, your get-up-and-go, your work ethic, your independence, your stamina
What is your excuse, your justification, your
Explanation
Why do you not participate
why are you sitting at home watching soaps/eating bonbons/collecting a fat government cheque without doing anything for it?
Must be nice

Shall I be grateful, then
Will that make you feel better about your taxes subsidising my existence?
Shall I point to the disability, shall I act crippled?
Would it be okay then,
to not work
(for pay)?

Would that
legitimize
the cheque?