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Showing posts from November, 2011

The Tinks Turn 6

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Yes, they do. Today, in fact. I don't know how they went from this to who they are today, but I'm enhjoying every minute!
We had a wonderful party for them a couple of weeks ago. Herewith a few pics for the day.
I was in charge of distracting the wee monsters while everyone else were preparing the room. This naturally meant that they took turns riding on the back of my wheelchair while I chased the other one around the room(apparently with a maniacal expression on my face)
Photo by David
I had no idea that Morgan Monkey Girl rode this way until I saw the picture
Photo by David When that started getting a little old, we gave them their present: two pairs of wings. And then I chased them around the room while they pretended to fly. Throughout the day, several adults also tried out the wings. Okay, so almost everybody tried the wings and wished that taking in adult sizes.

Liam was sure that his were owl's wings and spend a significant amount of time communicating in owl, sayin…

Disabled? Disposable. Help Save the Hardship Fund

I had a plan for this week. I’ve had that plan for about a year. Because the International Day of People with Disabilities is on December 3 and for the last couple of years, that meant that I go to Variety Village to take part in the City's celebration of this day. It's a terrific day that celebrates the achievements of people with disabilities.There is space for artists with disabilities to exhibit their work, a lot of networking and awards recognizing the achievements of people with disabilities. Due to an injury, I had to miss last year's fun, but was determined to go this year.
And then Rob Ford got elected. Which means this year, The International Day for People with Disabilities will not be celebrated by the Cityof Toronto. Sure, there'll be a proclamation and the Access Award will be given out during the City’s celebration of Human Rights Day, held in the Council Chamber. Which I thought wasn’t accessible, but maybe they've changed that in the last year or s…

Pie

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The Knife's Edge

Monday morning, I woke up with a pain in my right big toe. Well, not exactly in the toe itself, but just below the bottom joint. I wiggled it, inspected it closely and then went about my day.

It continued to hurt, just at that spot below the bottom joint and it made me nervous. In 2004 when I ran out of my hoarded store of Vioxx and the RA came roaring back, it did so in the bottom joint of the big toe on my left foot. It started hurting and swelling just below that joint and within 24 hours there was an almost audible pop when the fluid filled the joint so much that it felt as if it was forcing apart the bones.

Granted, what happened Monday morning wasn't in what I've come to consider my canary-in-the-mine joint, the one that started the last, big flare. And it wasn't in the one that’s taken over, tendon problems having become the new sign that I’m low on Humira. So I checked other joints, went though a couple of moves and tricks that usually mean I’m doing well and pass…

A Complicated Santa

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Yesterday, Santa came to town and you all know how I love the annual Santa Claus Parade. This year, though... There's a rant coming and I'm not just trying to work one in every time I post, but... OK, let's have some fun first. And a lot of it was as delightful as it's ever been.
Canada Post collected letters for Santa (I can't begin to say how charming this is)

The Toronto Police contributed an old form of transportation for police officers

And a so-old-it's-new-again form of transportation

There were bands

and Bugs

More horses
the Muppets
Very deliberately not making comments about cops and donuts here

Cheerleaders

And the U of T Engineering band
The Royal Canadian Horsie Police

And now for the parts that complicated matters. I have attended every Santa Claus Parade for the last 16 years and have always had a spectacular time. Everyone were there to have a good time, to have a chat with neighbors, to get swept up in the childlike joy of the day and eve…

A Question for the DIP Deniers

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I'm not RA for a long time and I've now worked in a job that exposes me to a lot of news about RA for several years and yet, I still learn new things every day. For instance, the DIP debate.


The DIP is short for the distal interphalangeal joint. Which is the joint on your finger just before the nail.


(And I can't say anything that has the word phalanges in it without thinking "dancing phalanges!")


Anyway, back to the point of the day. For as long as I remember, I've known that swan neck deformities are classic signs of RA. I developed them very early on and most of the people I've met who had RA in their hands and fingers that had not been well controlled also had them. It's similar to secret handshake for people who can't shake hands - a quick glance will tell you whether the other person is "in the club."


And what is this swan neck deformity? The American College of Rheumatology (ACR) has a picture and drawing in their image bank describi…

Social Autoimmune Caregiving Media

It's hard to sum up these two very different posts I wrote for HealthCentral this week, hence the mangled title. 
One was about how the RA community connects using social media:
"RA affects one percent of the population. Without actively searching, you'd be lucky to run into another person who lives with the same chronic illness you do. Yet, finding someone who knows exactly what you're going through is on the top of all our wish lists. When I was growing up, the only place I met other kids with JRA was in hospitals and doctors' offices. Even now, I've only met a handful of people who have RA in the part of my life that takes place face-to-face.
Enter the Internet. It has had a revolutionary impact on our ability to connect, person to person and community to community, creating a larger tapestry of people living with RA and other autoimmune diseases."
The rest of that post is here.
November is Alzheimer's Awareness Month and several of the H…

2012 Calendar & Holiday Stuff

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I forgot again. Forgot how long it takes to make the calendar, the cards and all the rest. But being a bit stubborn (!) , I persevered and here it all is. A little late, but here.
There's a calendar

and holidays cards, some of which have a greeting inside (a request from a customer last year)




 There are new magnets, a really cute festive button, a pirate ship on a mousepad and new prints that may be perfect for gift ideas. Taken a gander at the shop to see for yourself.
Happy that time of year again!



99% Accessible

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I've written before about how fascinated I am by the Occupy movements in general and Occupy Toronto in particular and I'm about to go on about it again. But this time, it's about a particular aspect of Occupy Toronto.

A few weeks ago, I was wandering around the park checking things out when I saw this
An accessible porta potty. I stood (metaphorically) in front of it for a little while, not because it reminded me of the state of my bladder, but because I was agog at what was happening. And then I wandered further and saw this

And if they hadn't had my support before, as of that day, I was firmly in their camp. Well, not literally - accessible porta potty notwithstanding, camping is still not feasible for me.

A few days ago, I ran into one of the protesters, a woman named Emily who uses a scooter (she has a blog, but alas, I don't know where it is - Emily, if you read this, please send me the link). We chatted about the movement in general and it wasn't long before …

Remembrance Day, 2011

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In Which I Re-Learn the Basics of Living with RA

In my latest MyRACentral post, I give the internet an opportunity to laugh at me:
"I consider myself a fairly smart person. It's not something we're supposed to say, just as we are not supposed to remark on our own gorgeousness, but there it is. I'm certainly not in the same league of attractiveness as supermodels or Hollywood stars, but feel fairly confident in saying that my brain works pretty well most of the time.
And then there are the moments of sheer unadulterated and profound stupidity."
You can read the rest here.

Figments of the Imagination

Jenni over at ChronicBabe had a plan for her month-long sabbatical: ask for guest posters. My contribution appears today and is cross-posted here. Thanks for including me, Jenni! "I'm so relieved I'm not crazy!"
Someone I know has just - finally - received a diagnosis of rheumatoid arthritis. When she told me what happened in the appointment, she mentioned her relief that she hadn't lost her mind or made it all up. This despite having spent months experiencing obvious physical symptoms that something was Very Wrong indeed. I'm pretty sure most of you are nodding in recognition, having been in that place of thinking you'd lost your mind.
That's when I started wondering why it is that we doubt ourselves so much. And I think I’ve found a few reasons,
Denial Ain't Just a River in Egypt This is a no-brainer. Nobody wants to be sick. No one wants these mysterious symptoms to be an indication that there is something going on, something that likely can'…

Pink Umbrellas

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Inside the Miracle

Last weekend, a user on MyRACentral named Laurie posted about the change in her life brought about by Humira. Less than a year ago, two separate doctors told her that she'd never be strong enough to do the physical things she loved, would never kayak or hike again. So she sold her kayak and I can only imagine the grief that followed. Actually, I can imagine the grief, because I've been there, too. A different expression of losing what was an essential part of you, but I suspect the same feeling. It's a devastating sadness, this necessity of redefining who you are, of giving up something so much part of you that you may as well amputate a limb. The phantom pain echoes as you move forward, becomes scar tissue, a reminder of what you no longer have.
But this is not about sadness, this is about joy. Because in that post, Laurie tells of confounding the soothsaying of the doctors and after five months on Humira getting back into a kayak. And every time I hear a story such as L…

Sorry for the Inconvenience

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I was on a small excursion, among other things returning books to the library and while I was there, I picked up another one. After getting checked out, I moved over about a meter and a bit to get out of the way so the person behind me could get to the counter and talk to the librarian. This meant that I was sitting in front of the door, not quite all the way there, but close enough that there was about the width of a person between me and the automatic door button. I was wrangling a number of things on my lap, trying to put my library card back in my purse and after that put the book in a bag, both of which were also on my lap.

Suddenly, a woman swoops in and presses the button for the automatic door.

"There you go!" she cheerily, clearly pleased with herself for helping out.

"Thanks!" I look up and smile. "I'm not quite ready yet," and I bend my head down to look at the pile in my lap, still trying to get my library card into its slot.

"Oh jee…