Tuesday, October 30, 2012

Domino Effect

About 10 days ago, I had a bit of a wonky transfer. The person helping me to get from my bed to the chair put her foot half an inch closer to me than it should have been, blocking my left leg from moving and my left ankle twisted.

These things happen.

My left leg is my stronger leg. When I was 16, I had a synevectomythe in my left knee, which subsequently fused. It wasn't supposed to, but it was a good thing. A fused joint has more stability and blessedly, no pain. It means my left leg sticks out straight, but it's stable, strong, and not subject to the vagaries of RA.

The ankle, however, is not fused. And it didn't like the twist. Thanks to Humira, the sprain. I've been "enjoying" in the last 10 days was a light one, not the colorfully-bruised-and-swollen-extravaganza-lasting-well-over-six-weeks I’ve experienced in the past after an injury. Nonetheless, it hurt and when one area hurts, the rest of the body follows like so:

Normally, my left foot is pressed firmly against the footplate of an elevated foot rest most of the day. I like to believe that this qualifies as a kind of weight-bearing that can help prevent osteoporosis. However, more or less standing on a sprained ankle is not comfortable, so I started bracing my right foot against the left foot rest, serving as support for my left ankle. Leading to…

This helped the left ankle, but now my right leg started feeling the strain. Particularly my right knee, which is not fused and therefore subject to the consequences of placing extra stress on the joints, muscles and ligaments. Bracing the right leg against left foot rest - not a natural position - put stress not just on the right ankle and knee, but also on that muscle that goes along the outside of your thigh from your knee into your butt. Putting extra strain on any muscle when you have fibromyalgia is not fun. Between joints and muscles, my right leg was soon on fire, but slightly less on fire than my left ankle, so there was nothing for it. Leading to…

Placing right foot under the left also required me to schooch down in my chair a bit. When one's derrière is not as far back in one seat as it should be, you have an interesting bit of strain being placed on your lower back. Which was soon screaming. Cindy easing the left ankle was still a priority, as it is the one that takes most of my weight when I transfer from chair to bed and so on, there was nothing for it. Leading to…

I have very little mobility in my shoulders. When you're at the computer, schooched down in your chair, you have to lift your arms higher to reach the keyboard, mouse and other work accoutrements. When you have very limited mobility in your shoulders, this means you will essentially move your arms from your upper back instead of the shoulder joint. Leading to…

Putting this level of strain on your upper back and shoulders very quickly start poking at the never-ending neck injury, making it even more irritable. Which is why this weekend, when The Boy imitated a Slow Loriseating a rice ball and making me laugh so hard I cried, my neck seized up.

And that's how my sprained ankle became a pain in the neck.

Tuesday, October 23, 2012

Muffin: She Came, She Saw, She Conquered

For a while now, I have gently nagged encouraged my mother to consider getting a cat. She (metaphorically) put all four paws in the ground, wasn't sure she was up for having another animal, didn't know if she could take care of it, blah, blah, blah. Then a friend of hers came stay for a day, bringing along her own cat and my mother was sold. Over the next several weeks, we spend an inordinate amount of time on the adoption area of the Toronto Humane Society website (be careful – clicking on that link may cause cat fever). Although we looked at an awful lot of very cute cats, none of them really jumped out at her.

And then one day, we saw this face

And my mother knew. This was the one. We promptly sent The Boy and his sister – good sports, both - to visit the Victoria Park storefront and they came back with a positive report. Muffin, as the wee beastie was called - named by her past owner, who had died - was good-natured, calm and tolerated getting mangled, although she didn't like her belly rubbed. Two days later, we all packed into a van and went.

Imagine the scene: four people enter a strip mall location of the local Humane Society, one in which numerous cats wander around freely. We quickly spot Muffin halfway down the room. My mother bends down, making come-hither noises and the cat comes up to her, sniffs her hand and plops over on her back, wanting bellyrubs.

We like to say that this was the moment where Muffin adopted my mother. There were some formalities to complete, however. My mother sat down on the couch and Muffin lay down in front of her, on guard. This previously good-natured cat then proceeded to hiss at any other cat that came within 10 feet of my mother. No doubt about it. Muffin had found her person. She proceeded to actively discouraging any other feline in the vicinity from entertaining any thoughts whatsoever about ingratiating themselves with the woman on the couch.

Half an hour later, it was official: Janne and I had a new sister. We both felt that Muffin was a bit of a ridiculous name for a cat and had suggested finding another moniker. Then we met the wee creature and realized that Muffin is very much a Muffin.

It has been five months since Muffin found her new home and it didn't take her long to settle in. Which is code for taking over. You see, Muffin is a bit of a diva. Perhaps that's a misnomer - being a diva is, like pregnancy, a binary state. You either are or you are not. And Muffin most decidedly is. She is the personification of Cat: she wants what she wants when she wants it. If my mother doesn't hop to and provide what Muffin wants when she wants it, Madame sits pointedly at my mother - yes, we have found another cat who communicates through posture - and that usually does the trick. Her Majesty likes a certain kind of food and won't eat unless this is what she gets. She also likes pawing the comforter like a horse at 6 AM asking my mother for more of this food. The keyboard tray on the computer table is now the place where Her Illuminated Loveliness sleeps, necessitating buying a wireless keyboard which can be removed to make room for her divine body (previously, she nudged the keyboard down the back. Numerous times). And throughout it all, she keeps up a running commentary on what's going on. Muffin is very chatty.

I thought Lucy had a lot to say, but I was wrong. Muffin has a lot to say. She has opinions about food (what, when and in which quantities), about waking up, when it's time to play, the state of the world, grumbles about the phone ringing when she was sleeping and when it's time to put a cup of water on the bathroom counter so she can drink from it. She has very decided opinions about the activities in which my mother engage that do not include her and she very much has opinions about being brushed and getting rubs. She likes to inform us when they should happen and while they are happening, she tells us how wonderful they are and where to move your hand, usually while undulating wildly on a horizontal surface 

This cat has mind and personality to spare, but she is also beautiful. She is completely different from Lucy's tall and elongated frame, Siamese-narrow face and rather coarse coat. Muffin is short and compact, standing solidly on this earth, with a face as broad as a tomcat’s. Her eyes are ever alert and communicating her thoughts and wishes - because this cat has thoughts. Lots of them. We are all in love with her coloring and her fur is like velour, so inviting for your hands. Which she frequently opines should be touching her, so it works out for both parties. In these and so many other ways, Muffin has proven that she is the Mistress of her territory and whatever minions may at any time dwell therein

Muffin may only have been part of the family for five months, but it feels like more than that. She and my mother knew each other from the start and have only become more of a unit since. Every now and again, you are lucky enough to meet an animal who is truly yours and where you are truly their person. An animal who belongs. When you do, it is nothing but joy. 


Thursday, October 18, 2012

User's Choice Awards

The Arthritis Foundation is currently accepting nominations for their User's Choice Awards. These awards will be giving out to products and services that work well for people living with arthritis.Categories include cell phone, weight management, car, hotel, health plan and so on.

Nominations are open until Sunday, October 21, so hop on over and nominate your choices!


When the Money Runs Out: Chronic Illness and Bankruptcy

This month, HealthCentral writers are doing posts about the cost of illness and staying healthy. Earlier this year, I did a consumer proposal to deal with my debt, so the natural topic for me was medical bankruptcy and its alternatives:

"Six months ago, I faced reality: my debt had become unmanageable. Having a chronic illness and disability is expensive – some of my meds are covered, but some aren’t and don't get me started on how expensive it is to repair a power wheelchair. After years of juggling my finances, all the balls were crashing to the floor. Paying bills made me queasy, I was paying one credit card with another and running out of money in the middle of the month, which meant using credit to buy food. There was nothing for it. I made the call to a credit counselor to explore my options.

There is a lot of judgment about declaring bankruptcy, both from yourself and others. It feels shameful, as if you failed in the basic task of being an adult. As if you're irresponsible and a spendthrift and a leech upon society. That’s the myth. The facts are startling and sobering and very much not about being irresponsible. Over 60 percent of bankruptcies in the US are medical. That is, they are filed by people who have lost income due to illness or mortgage their home to pay medical bills. Medical bankruptcy has nothing to do with not managing your money, it is caused by an external force out of your control. You have to ask yourself this question: is it logical to feel shame about something which is not your fault?"

You can read the rest of the post here.

Tuesday, October 16, 2012

Real RA: Blood Tests of Perspective


RA isn't just about inflammation and your joints. RA is a systemic disease, also affecting muscles, organs and other systems in your body. The first time I learned about that was when I was 12 when it tried to kill me by attacking my heart and liver.

The reason there has historically been a mortality gap between people with RA and those without has a lot to do with the impact of the disease on your heart. So since I'm now officially middle-aged, my rheumatologist and I thought it would be a good idea to start keeping an eye on those potential systemic effects. Which is a long-winded way of saying that my family doctor arranged for some blood tests, including my CRP (an inflammation marker) and my cholesterol. Last Tuesday I went to get my shot and inquire about the results of the blood tests while I was there. She looks through them and I ask how my CRP is.

"Hmm…” She says, sounding a bit surprised.
"What is it?" I ask.
"What's it supposed to be?" I ask, feeling like I ought to know, what with being the Community Leader for RAHealthCentral, but I've never paid much attention to blood tests and not just because I'm from an era where you weren’t told your blood test results.


And then I make a tortured joke about how based on certain criteria out there, I guess that means I'm not in remission after all.


I spent some time that day and the next freaking out a bit. Which doesn't look any different than my normal self because I was too freaked out to talk about it. How can all my joints be okay and my inflammation marker be that high? Does this mean I have a crapload of systemic inflammation going on? Does that mean I’ll have to start dealing with my disease again?

Does this mean I’ll have to start dealing with my disease again??

Somewhere in the middle of the madness, I decide to try not to freak out until I’ve talked to my rheumatologist. This, however, does not help the anxiety. I once had a button that said "I'm not tense. I'm terribly, terribly alert." This perfectly describes my state of mind last week.

Living with RA is like walking a tight rope over an abyss filled with monsters. You have move carefully and not look down, or the fear will make you fall.


About 24 hours after I had seen my family doctor I remember that I normally very deliberately don’t know too much about my RA-related blood tests. Instead, I rely on how I feel and what my joints look like. I remind myself that since I feel fine and there's no inflammation in my joints, the impact of any potential inflammation in my body is probably not different that particular day than it was before I knew what my CRP was. I decide to stop fretting until my rheumatologist can weigh in on the matter. This time, I'm somewhat more successful.

Thursday, I go to see my wonderful rheumatologist and we chat about this, that and the other thing and then I mention the CRP and how it's a lot higher than it should be.

Her first question to me is about the state of my health when I went to see the vampire in the lab - did I have an infection of some sort? I mentioned that I have been battling a sinus infection (because thanks to the side effects of Humira, I am almost always beating back a sinus infection). She looks at my hemoglobin, which has been unnerving low for most of my life, but thanks to Biologics is now normal and tells me not to worry. She goes on to say that this is why tests like the CRP and ESR (another inflammation marker) are no good at telling you much about RA, because if you have a sinus infection or bladder infection or something else is going on in your body, they'll go up. You have to balance that level against hemoglobin and how the joints present. If hemoglobin is normal and the joints are looking okay, then the inflammation marker is up for a reason unrelated to RA. She also remarks that my sugar is perfect and my cholesterol excellent, so get a grip and she'll see me in six months.

And this is why I don’t pay too much attention to the blood tests. Because they will only freak you out.

These days I’m freaking out (but just a little, as instructed) with Laurie who has a realreason for it. Please pop on over and give her some support. 

Friday, October 12, 2012

Waving for World Arthritis Day

Today is World Arthritis Day. One of their nifty activities is the awareness campaign Wave for World Arthritis Day. The idea is beautifully simple, something everyone can do: take a photo or video of yourself and family and friends waving and submit it to the World Arthritis Day website. 

So that's what we did after the Thanksgiving lunch last weekend (or, as Ken called it, Tinksgiving)

 Photo by The Boy's boy

Why don't you join us? Wave for World Arthritis Day and let us know in the comments when you've uploaded your pic.

Thursday, October 11, 2012

World Arthritis Day: Global Awareness and You

Tomorrow is World Arthritis Day and all sorts of cools things are happening. I wrote about some of them on HealthCentral:

"You are not alone. All over the world, millions of people live with arthritis. This Friday, October 12, is World Arthritis Day – a time for all of us to get together and make our voices heard.

An Introduction to World Arthritis Day
World Arthritis Day is celebrated every year on October 12. It was created in 1996 as an awareness initiative by PARE, the Standing Committee of People with Arthritis/Rheumatism in Europe, the patient voice in EULAR (the European League Against Rheumatism).

World Arthritis Day has three goals: to raise awareness of arthritis and musculoskeletal conditions, to influence public policy to improve the lives of people with such conditions and to make sure that those who need it are aware of the support networks available. To reach these goals, organizations in more than 50 countries work together with EULAR and PARE to create a vast network of awareness."

You can read the rest of the post here.

Wednesday, October 10, 2012

Join the Show Us Your Hands! Board!

Show Us Your Hands! is moving to the next level. We are beginning the process of becoming an official nonprofit charity organization in order to continue organizing creative community projects and awareness campaigns aimed at increasing public understanding of inflammatory arthritis. This means we need to grow our Board of Directors.

This is where you come in!

As a member of the Show Us Your Hands! Board of Directors, your responsibilities would include:
  • defining our Mission and ensuring we stay on course,
  • developing an annual plan and managing programs to accomplish our Mission,
  • implementing and maintaining transparent financial systems, budgets and accounting controls,
  • supporting and engaging in fundraising efforts,
  • internal board management, such as electing officers and replacing outgoing Directors,
  • establishing and overseeing special-issues committees (e.g., community outreach, volunteers, awareness programs, special events), and
  • helping promote Show Us Your Hands! and its activities to the public.
Our organizational culture is one that emphasizes proactive teamwork, respect and a sense of humor. We believe in the inflammatory arthritis community and in this organization and work hard for the love of the cause. (This is another way of saying that this is a volunteer unpaid position!)

If you are committed to working at the global grassroots level to unite and inspire people who live with inflammatory arthritis, please let us know by responding to a few questions before November 1, 2012. We will carefully review all submissions and then contact selected individuals in order to schedule brief online interviews.

Experience with finance and accounting is a plus.

Apply now to join the Show Us Your Hands! Board of Directors.

The mission of Show Us Your Hands! is to unite and inspire people who live with inflammatory arthritis. We carry out this mission through creative community projects and awareness campaigns aimed at increasing public understanding of inflammatory arthritis. Our community members, program participants, volunteers, donors, directors and staff work together to build hope for the inflammatory arthritis community, one hand at a time. For more information, please visit www.showusyourhands.org.



Monday, October 08, 2012

The Time of My Life

Ah… The bliss of long weekends. Today is Canadian Thanksgiving and although I never really got into the habit of eating turkey, I do like the part where you remember about gratitude.

I was talking to my naturopath the other day about stress, its physical manifestations and ways to manage that. I talked about being overcommitted - it's something I started recently, this talking about the madness that is my list of commitments in the hope that admitting I have a problem will be the first step in solving it. We went through the various things on my list and most of them are interesting and meaningful - like for instance Show Is Your Hands! and by the way, have you seen our new website? It's beautiful.

And that's when I realized something enough to say out loud to another human being. I'm having a blast. I don't remember another time in my life that was so completely about the joy of doing wonderful, useful things and having the energy and ability to (mostly) do them.

And sure, I'm exhausted most of the time and really need to get enough of a grip that I don't work until shortly before midnight. And I need to remember that having a chronic illness means maintaining a careful balance of doing and rest because otherwise you can't keep doing and blah, blah, blah…

But tell me this: how do you get off the roller coaster when you are having the time of your life?

I am lucky, lucky, lucky. I found a medication that helps my body have the ability to do what I want. I have found people and places with whom to do things that captivate and fascinate me and which make (almost) every day a joy. Yes, even when I'm exhausted and hurting because I've done too much. Even when I feel like my life is going by in a blur and I have no idea how it got to be Thanksgiving already and know that I have a problem with workaholism, but…

Life is good. 

Friday, October 05, 2012

La Lune et Les Moutons

Nuit Blanche, the annual night-time art extravaganza, was last Saturday. I haven't gone before because it's the last weekend in September and and that usually means it's cold, but there was this sheep thing down the street....

So we wandered out under the full Harvest Moon, headed to see Transhumance by Corpus. Originally based on their piece of performance art called Les Moutons, this included a number of community members and was the biggest flock of human sheep they'd ever had.


I know you're wondering about the sheep thing, but we're getting to it. When you get a chance, check out the links above, as well as this one. Watch the videos. You won't regret it.

So, it's like this… the people who originally put this together spent quite some time studying sheep and shepherds in Europe. Then they made costumes, put people in them and told a story through it. If it sounds demented, it's because it is, but it is also effective and touching and surreal and amazing.

Our particular flock of sheep came out of a courtyard, moving towards a grassy knoll a little bit down the street. This was the transhumance - defined in Wikipedia as "the seasonal movement of people with the livestock between fixed summer and winter pastures." When you first saw them, it was beyond words. Hearing the bells and the bleating was funny, but also weirdly evocative.

They had a little sitdown on the other side of the street. Or rather, they sort of threw themselves down on the ground, just like sheep. Then they sat there, occasionally bleating, some walking around and one even having a bit of a wee. Leave it to the black sheep in the flock...

The shepherd stood patiently waiting until the sheet had had enough of a rest and then the flock and the audience moved towards the mountain pasture

Where one toddler got up close and personal with the sheep. She seemed a little confused. The sheep on the right got sheared a little later in the performance and it was quite astonishing, really. She had the sheep movements down pat. If you've ever seen a sheep shearing, either on TV or in real life, you'll know how she moved

And that was the thing about it. This wasn't done tongue-in-cheek at all. Well, I'm sure they weren't unaware of how funny it was, but the performers lived sheepishness. They had the blank thousand yard stare, their movements were very sheeplike whether they were walking or sitting quietly chewing. There was a commitment on behalf of the people playing sheet that put the whole thing into something much more than humour

The bleats were funny, though. Especially when they did it right in front of a child. Big hit. The sheep that got milked was also a big hit and the shepherd generously shared cups with the audience


Yep. Blank stare that doesn't seek out eye contact. Imagine 25 minutes of that. This experience made me realize how much we look at and engage with our environment

The ram was tied to a tree a little away from the rest of the flock and at one point, a wolf came out of the blue and attacked it. The shepherd managed to chase it away, but there was a bit of limping when they all went back from whence they came

Overheard from a man in the crowd: "I've been coming to Nuit Blanche for 10 years and this made it all worthwhile."

I completely agree.

Tuesday, October 02, 2012

Generational Dissonance

The automatic door opener on my apartment's front door decided to become processed this weekend. Perhaps it is Regan being a bad influence. Regardless of cause, the thing started opening the door repeatedly without provocation or encouragement from me.

This was a tad unnerving. It was also extremely frustrating, as this is the mechanism that was repaired to the tune of $1000 a month ago.

I turned it off - blessedly, there is a key that can turn off the mechanism - and called first thing Monday morning for a repair. Within a few hours, a service guy appeared accompanied by a young man who was maybe 19 or so. It turns out it was service guy’s son who is following in his father's footsteps, apprenticing to learn to fix automatic doors. From my point of view, a most laudable career goal.

They tinkered around for a while, replacing the strike - the doohickey that lets go of the latch to open the door when a button is pushed - and looking at the wiring in the box above my door. Suddenly, Service Guy gets an idea, doublechecks and indeed, it appears he has found the problem. The strike operates on AC voltage, but my automatic door opener operates on DC.

I don’t know what that means, I say, waving my hand in a "don't worry" gesture. I just know the band. Service Guy gets it. Service Guy’s Son looks blank. I smile to myself about generational tastes in music and the moment passes.

The difference in voltage appears to be the cause of the symptoms of possession, so I need a new strike and a rectifier installed between my mechanism and the strike to translate the voltage from AC to DC or vice versa.

As an aside, I’d love to have a rectifier for so many things. Can you imagine a world where you can solve say, communication breakdown merely by installing a rectifier? World peace would be imminent.

Service Guy goes to his truck to get the part, leaving his son blocking my door so the cat doesn't get out. Since I'm in the hallway for the same purpose and it would be weird for us to just stand there, I engage him in conversation. We end up talking about his choice of profession which he admits can be somewhat confusing at times. I mention that is not too straightforward - any good repair person has to be a bit of a MacGyver. I then remember that the kid was likely in diapers when the show was on and ask if he knows the show.

"Oh yes," he says, "my grandma used to watch it."

I spent the rest of the day calling everyone whippersnappers.