Monday, July 30, 2012

Busy Bee

Followed a bumblebee around the other day. It was lost in gathering and I was lost in watching it



Thursday, July 26, 2012

Nothing More than Feelings

(Sorry if that title gave you an earworm of this song)

I've been thinking some more. This time on vacation has had me connecting the dots from my own moments of high anxiety to the notion of catastrophizing and today, the subject is feelings. More specifically the dismissal of feelings that lies at the base of the concept of catastrophizing.

Let's check this scenario:

Patient: "this is the worst pain ever."
Doctor: "you're catastrophizing. This is a sign of bad coping skills."

Fabulous. There you are, in the midst of extreme pain and your doctor says you're exaggerating and not coping well. That'll shut you up in hurry, won't it?

Let's try another scenario:

Patient: "this is the worst pain ever."
Doctor: "I'm so sorry to hear that. That must be really hard."

See the difference? In scenario #2, the doctor listens, hears the message and uses empathy/sympathy. By doing so, they have made it safe for the patient to express how they truly feel. Right there, you have the beginning of a conversation that is more likely to include a deep honesty from both sides. When a patient feels it is okay to truly say how the disease impacts their life instead of feeling pressured to buck up and underreport their symptoms, the doctor is more likely to fully understand the patient's reality. And when that happens, patients are more likely to trust their doctor, follow their suggestions and have faith in the treatment. And this makes the.treatment much more likely to be effective and successful.

In my previous career, I was a social worker. One of the very first things we learned in the MSW program was that your client's feelings are always valid. Always. In order to be an effective agent of change - a.k.a. social worker - you must respect where your client comes from. In order to help, you must first accept their reality. If you don't, you are no use to them. You cannot guide someone out of the woods unless you first go in and join them where they are.

Doctors are agents of change, too. But they are not taught to respect the minds and hearts rt their patients. Instead, they learn to focus on measurable physical events, leaving all those pesky feelings at the door. This is the equivalent of treating diabetes with medication and ignoring diet. Of treating heart disease with medication only an ignoring lifestyle changes. Or of treating RA with medication only, ignoring the rest (oh wait, that's what happens). And you – doctors, the medical literature – wonder about poor coping styles? They originate right there in your doctor’s office, when patients’ feelings are dismissed or silenced.

People are more than just their body. They are also their minds and hearts and they all play interconnecting roles in illness and coping with illness. The mind-body link is acknowledged pretty much everywhere as being an important factor in health and you ignore it at your peril. People will have better outcomes, better coping styles and better health if they are treated from a holistic point of view instead of focusing merely on their parts.

So for those in the medical profession, please set about getting comfortable with feelings. Maybe talk to a social worker or a psychologist or read a book about how best to engage with your patients and start practicing. Think about why it is that for people diagnosed with cancer, their first step is to see an oncology social worker. And think about why people diagnosd with a serious chronic illness do not get the same consideration.

And for those of us on the receiving end of medical care, let's start including a discussion of what we feel and think about our condition and how it impacts our lives in every medical appointment we have anyhow of our doctors consider all of us in their approach to treatment. Let's start asking for help when we need it.

Let us not be silenced any longer.

Wednesday, July 25, 2012

Painless Meme for Rheum mates


Kelly over at RA Warrior came up with a meme about what defines us. Have you done it yet?

Here are my answers:

What is one thing that defines who you are, regardless of RA? My faith that change is possible.

What’s one food you know they must have in heaven? Ris a la mande. Danish Christmas dessert.

Name a song that takes you to a happy place? Ode to Joy.

What’s your favorite city and why? Toronto. Multicultural, considerate, has everything you want, including nature in the middle of the city.

Name 1 thing that you have learned by living with Rheumatoid disease? Resilience.

What medication has helped you the most with RA symptoms? The least? Most: Biologics - my personal miracle. Least - everything else.

What do you most wish health care professionals understood about RA? That it affects all of your life, not just your body.

What is something about you that would probably surprise most people? That I'm a sap.

What is something about you that would probably surprise most people about your RA? That if given the chance to do everything over again, I wouldn't change a thing.

What is something that you want to be remembered for? Being a good friend.

Tuesday, July 24, 2012

Going to Gondwana

This weekend, we went to see the Ultimate Dinosaurs: Giants from Gondwana exhibition at the Royal Ontario Museum. Basic story: big dinosaurs from the southern hemisphere. Really big. We did a herd excursion - somewhat fitting, what with the herds of extinct creatures - piling friends and kids into one group and got set loose at the ROM. And much fun was had.

The biggest dinosaur is in the lobby because there isn't room for 110 feet of bones in the special exhibit hall. It was big

To get a better sense of just how big, let's use a six-year-old girl for scale

Liam was very excited

Cleverly, there was a movie of what Gondwana might have looked like as we waited to get in

And it was pretty great once you got there. The skeletons were arranged in a wonderfully lifelike way - this little guy was being chased, about to be dinner. Amazing sense of motion

This one was on its way somewhere. Thankfully, it paused until I could get past

and then mosied on

I'd like to see how they got this bone away from the dog that was gnawing on it. And wonder how big the dog way

Lots of interactive stuff for the kids. Morgan found a microscope and it blew her mind

And the piece de resistance: the gigantosaurus. Apparently the biggest predator to ever walk the earth. Bit intimidating

Thanks to the augmented reality used in the exhibition (and Carson's iPhone), I got to get up close and personal to one of the beasties

 But these two were my favourite wee beasties


Thursday, July 19, 2012

Catastrophizing and Good Doctoring

I've been thinking. And what with being on vacation, there's actually been mental room to move some ideas around, played connect the dots and whatnot. Settle in, this is a long one…

More specifically, I’ve been thinking about catastrophizing. This is a concept discussed in the field of rheumatology. The concept states that people who have RA pain tend to exaggerate reports and worries about pain and its impact, leading to poor coping styles and depression. One article says “disease severity (as measured by 'objective' indices such as those that employ radiography or serology) is only marginally related to patients' reports of pain severity.” Many others investigate catastrophizing in various contexts, emphasizing its relationship to depression, hopelessness, anxiety, passivity in coping with pain and on and on. In her discussion of catastrophizing, Kelly includes a couple of examples of what this may be. For instance, "this is the worst pain in the world" and "how am I going to take care of my baby?"

So much of the discussion within the medical profession on the issue of pain and catastrophizing veers towards minimizing the pain experienced by the people who live with RA and other conditions that involve chronic pain. And this may be the point when someone in the medical version might think that I'm exaggerating for effect, but consider this. The November/December issue of WebMD Magazine (p.32-34) says RA pain "is usually not severe, but more chronic and dull" (thanks to Kelly for the heads up). Because apparently severe and chronic are mutually exclusive? In the same article, they mentioned that a "general rule for all the therapies is the rule of thirds: a third of patients will get much better with a particular therapy, a third will get somewhat better, and a third will not improve at all." Which – connecting the dots from one statement to another - must mean that uncontrolled RA doesn't hurt that much, right? So it can’t be that serious, right?

I am four, beyond the age for strollers, but still, my mother is pushing me in one because my left ankle has swollen to the point where you can't see the bones. I am nine, crawling from my bedroom to the kitchen to get my medication, because it hurts too much to walk. I am 12, lost in fever hallucinations as my heart and my liver become inflamed and my lungs fill with fluid and I almost die. I am 14, crying in a dark hospital room, the pain in my shoulders taking my breath away. I am 41, crying in the shower every morning because the pain in my entire body is taking my breath away. And I am also 41 when the disease flares so high and so hot that the pain drives me close to suicide.

And that’s just one person’s experience. 

RA pain can be sharp, pounding, throbbing. It can feel as if you are rolling around in slightly dulled - but not dull - glass shards, as if you're being stabbed with an ice pick, jolted with electricity or as if someone is inserting a very thin blade between the bones in your joints and working diligently to pry them apart. It’s exhausting, covering every part of you in a grey film, affecting everything you do. It can be manageable for a while, only to flare unpredictably and randomly, taking control of your life. With uncontrolled RA, you never know how you'll be feeling tomorrow morning (or this afternoon, for that matter).

RA pain is not dull. Most people would not describe their RA pain as "not severe." Yet the literature - and many in the medical profession - persists in minimizing it and continue to question the reports of the severity of the pain and the extent of its impact from those who live with it. They call our reports catastrophizing.

So I thought some more and decided to play with the concept. Let's take the disease out of it for a minute.

Say you’re going about your life, doing whatever that entails. Randomly, forces beyond your control will swoop in and take over. They will roll you in slightly dulled glass shards, stab you with ice picks, jolt you with electricity and insert slender blades into your joints, wiggling them to pry apart the bones. Then they go away, leaving you to heal and try to pick up your life again. But it's not the only time these forces take over your life. They come back intermittently - maybe tomorrow, maybe next week, maybe not until two years from now. They stay for a few hours, days or months or years. You never know.

What else does that sound like? To me, that sounds like sudden arrest, imprisonment and torture. The kind you read about in Amnesty International bulletins, stories from dictatorships around the world. There are programs for victims of torture to help them recover, physically and emotionally and we all understand that such people are likely to need help to heal and may even have PTSD. 

Am I saying that having RA can lead to you developing PTSD? No, I'm not. I do not know nearly enough about this condition to offer any sort of intelligent analysis. I’m not actually talking about acts of torture at all except to say that people who are victims of torture deserve our help and our resources in fighting the regimes that torture.

What I am wondering about, though, is why people who live with a chronic illness, who are enduring intense and life-altering pain, are expected to suck it up when others get understanding and help? Why are we doubted and our experience minimized? Why is our reaction to our pain shrugged off as a “poor coping style”? Why are we, by some members of the medical profession, expected to address the pain and the worries about it with the powers of our minds instead of painkillers? And if we do ask for drugs because we'd like to be able to live our lives, some doctors will refuse to write prescriptions for narcotics. The medications that may control the disease don't always work and when they don't, it is termed that “you fail the medication”, not that the medication fails to work for you. And all of this together contributes to an unseemly focus on our responsibility in controlling a disease over which we have no control.

So, dear medical profession. Unless you are willing to develop a chronic illness yourself to lend a first-hand knowledge of the thing which you are treating, you must stop this belief that people can’t be in as much pain as they tell you they are. You must stop the automatic discounting of their experience, stop calling it this catastrophizing. You must think about this thing separated from the disease and think about what it might mean and might do to a person. You must think about how you would feel if you were in their shoes. And then you must link it back to the disease which you are treating. For someone who is relatively new to RA, this may very well be "the worst pain" they can imagine. And for someone who is living with uncontrolled disease activity, wondering whether they'll be able to take care of their baby is a legitimate concern. Instead of making their feelings about their lives into something dysfunctional, you must listen and address it. Give them the pain meds they need, suggests resources that can help them with parenting. Tell them that you are on their team and will fight as hard as you can to help them get better.

In other words, you must have respect and imagination. If you do not, you are not a good doctor.

Tuesday, July 17, 2012

First Nations Procession

I live in old town Toronto, the part of the city that holds the first city hall, just down the street from the first parliament site. And there's been a vbunch of celebrations and events related to the bicentennial of the War of 1812. That's the one where we kicked the Americans' butt and burned down the White House.

Sorry 'bout that!

Yesterday, there was an honour procession of First Nation Chiefs, Elders, veteran and youth to - as it says on the poster - "commemmorate the contribution of more than 10,000 First Nations who fought as British Allies in the War of 1812." Or as our City Councillor Pam McConnell said, "protect us against American invasion." Aka, they saved our collective bacon a bunch of times.

And this is one of the reasons I love living downtown, because the procession started right here in my neck of the woods. So naturally, I went to check it out.


Because nothing says respect for historical contribution (and exploitation) like masses of bubbles!

Lots of Eagle Staffs

There were drummers

Waiting while the politicians spoke

The ceremonial unveiling of the new name for Lower Jarvis Street

A fantastic face

And I loved this guy, too (the four-legged one)

 It was an impressive and moving event and I'm glad I went.

Friday, July 13, 2012

Opening Up

This is why I'm five days into a very necessary two weeks off.

Actually, it was worse than that. It was the eyes going *boing* the minute I turned off the light, but no actual ideas coming, because my brain was moving so fast with everything I had done that day and needed to do the next that there wasn't room for ideas to hop on the ride. On Monday, I reached the point where the thought of working made me tear up. After battling it for several hours, I finally faced facts and e-mailed my lovely Producer at HealthCentral telling her that I’d be gone until the 23rd.

Tuesday, I was still in the crying mood, overwhelmed by a feeling of depression deeper than I’ve had in ages. Could not yank myself out of it and didn’t quite understand why it was there. Sure, I was tired and sure, I’ve worked too hard for too long without a break, but this despondent? Whyever for?

The Boy came by that evening and helped me do a bit of an audit of how I spend my time and the conclusion was rather telling. I'm usually awake about 13 hours a day. When we put it all together, 10 out of those hours were accounted for. And that's before eating meals, talking to The Boy, my mother, family and friends, playing with cat, grocery shopping, doing those life things that we all have to do (paying bills, making phone calls and whatnot), and with no allowances for the unusual events that randomly hijack my life.

No wonder I'm tired.

So I thought about it some and realized that from the minute I wake up, I hit the ground running. As I'm getting out of bed, I'm thinking about what needs doing as soon as I’m dressed and the rest of the day continues in the same vein. I'm always doing something, talking, writing, researching, running errands, having meetings and even when I "relax" by watching TV, I'm usually checking e-mail or editing photos (or whatever) in commercials and it's much the same when I listen to a book.

I don't remember the last time my mind has had the space to play.

No matter what I'm doing, the focus is always away from the present. There is always something I'm not doing and there's never enough time to do everything I need and want to do. And because I'm always moving, doing and then moving some more, it's become very easy to not pay attention to how stressed out I was. The regular mental images I've been having for the last four months or so straight out of a Lifetime movie of the week should have been an indication. I mean, it's fairly rare - I hope? - to have flashes of yourself  dying early, lying in a hospital bed with your beloved by your side. And instead of making me pay attention, they just reminded me that I needed to hurry and I pushed harder.

And then it all came together in a perfect storm of exhaustion, stress and anxiety and things got a little messy for a couple of hours.

In the past four months, I have worked harder than I ever have before, done more and, quite frankly, mostly had a spectacular time (working hard is my drug). But it has become all work, with no time to feed my soul, to slow down and sit for a spell with the people I love, in this life that I love. All this busy has become a wall between me and my life.

"Life is made of moments. The faster you move, the more you’ll miss." 
                                       - Jon Kabat-Zinn, Mindfulness for Beginners

This is what I'm focusing on now. It is the third day of me coming to my senses and I plan to spend today in the same way I spent the last two: doing nothing. Doing nothing but what is really, truly important. In the past two days I have

Sung silly songs to Lucy when she's purring on my lap
Turned on the TV in the middle of the day
Gone to Sugar Beach to watch the water glint in the sunshine
Watched kids learn to sail in tiny sailboats close to the shore
Opened a chapter from The Book to do a rewrite and closed it again because I didn't feel like doing anything that resembled work
Watched birds in a fountain, cooling down, drinking and squabbling for room
Looked at the trees in the distance, noticing how each was a slightly different shade of green
Sat in a church with my eyes closed and breathed
Left my camera at home so nothing would be between me and the world
Read a good book for as long as I wanted
Sat in the sun, feeling the heat sink deep into my bones

I am beginning to feel like myself again.

Sometime next week I'll start thinking about how to slow down the madness when my vacation is over. But not yet. Now is for knitting together my body and my soul again. Now is for now. 

Nothing but the moment.

Monday, July 09, 2012

The Fibro Fairytale

Scene 1: I'll be going to a meeting where it's a good idea to look reasonably professional. I'm wearing my fancy new camisole under a sweater, looking as if I’ve actually planned what to wear (I work from home – looking put together is rare). I say goodbye to my attendant and start my breakfast routine. After about 5 minutes, I notice that the right shoulder strap is putting pressure on the edge of my shoulder blade. I fidget in my wheelchair, trying to find a slightly different position, but there's no real alternative to back resting against backrest. After 10 minutes my right shoulder is screaming in pain.

Scene 2: I just said goodbye to my attendant after a trip to the washroom and go back to my computer. It takes a little while to realize that something is wrong, but when I do, I dread what's coming. The left leg opening of my underpants is positioned slightly wonkily so the bone in my arse is resting right on the edge of the material. Within 10 minutes or so my entire left side is on fire.

Scene 3: lest you think it's all about the undergarments… There was something wrong with my foot rest. The doohickey that kept it elevated was slipping, just a millimeter or two. It took three days before I figured out why I'd gone from being perfectly fine to the pain in my entire body blaring so loud I couldn't think.

Fibromyalgia makes you hypersensitive. Sensitive to pressure, to change, to medication. To pretty much anything. You put pressure in the wrong area or on the wrong day and before you know it, you're in a flare. All your pain receptors are wide open, telling you that it isn't pressure after all, it's pain and screaming pain at that. It's not just the never-ending quest for underwear without seams (these are wonderful), bras that don't aggravate the trigger points or realizing you'll never again wear jeans because they are simply too tight, the pressure sending your body into hysterics. It is also sensitivity to temperature – for some heat, for some cold. This prompts endless games of musical chairs at restaurants. The goal of the game is to avoid the AC vent, because if you sit underneath it with cold air hitting your shoulders, it'll trigger a flare that won't subside for days. It’s sensitivity to medication, having a quarter of a normal dose suffice, something that’s impossible for most doctors to comprehend. I’ve taken to nodding in a friendly manner at their instructions and cutting everything in half (or quarters) at home. Often, it's enough.

I love many of the fairytales written by Hans Christian Andersen. Abrupt segue, perhaps, but relevant in a moment. The Little Mermaid is by far my favourite, with its story about pain, the power of love and sacrifice. But one of the stories that always made me laugh with its imagery was The Princess and the Pea. In this story, the girl knocks on the door of a castle in the middle of a rainstorm, claiming to be a princess. The Queen, being a clever woman, knew how to test this. She put a pea on the bed and piled 20 mattresses on it and 20 feather comforters on top of those and send the girl to the skyscraper bed. The next morning, the girl came to breakfast complaining of something hard being in the bed, making it impossible for her to have slept a wink, claiming tobe being black and blue all over. And because she was the sensitive, they knew she was a real princess.

So basically, I figure everyone who has fibromyalgia is royalty. Because, based on my experience of lying on half a cat treat last night and now feeling black and blue all over, the girl might have been royalty, but she also had fibromyalgia. And this is what gave me an idea:

A diagnosis of fibromyalgia should come with a welcome package put together in a lovely basket. In the basket would be scarves to keep your neck warm, seamless underpants, a list of helpful medications, a resource guide of things to do and not do to control the flares. On top of it all should be a sparkling tiara.

The only question is whether the tiara should be worn at all times or only during flares. What say you?

Monday, July 02, 2012

Real RA: Thinking Makes It So

Some time ago, I saw an image on Facebook about RA. Thanks to my fibro fog, I no longer remember who shared it in which group, but even if I did, I wouldn't disclose it. Because I am about to vehemently disagree and there's no need to get flame-y.

This is the image

And I have issues.

So, because I have RA, apparently I have only two options about how I feel on any given day. I can feel either mildly weepy or lie prostrate on the divan drowning in my own tears. It seems that having RA eliminates the possibility of any form of happiness or even just feeling meh. Instead, the diagnosis dooms us to a life of suffering, depression and forever leaking salt water out of our eyes.

Huh. No one ever told me this. Is it a new requirement?

Getting diagnosed with a chronic illness is hard. There's no getting around the fact that there's going to be crying. It is a normal part of grieving the loss of health, the state of innocence in which most people live where they take their abilities and lack of pain for granted. And there's no getting around the fact that living with a chronic illness is also not always a picnic. In fact, there are days where you are mildly weepy and there are other days where are you are a lot weepy. There are days where you hate your new existence, the disease that brought it about, the pain, the medications, the side effects and the fact that there will never, ever be a vacation from RA. Never again will you not have it. You may have remission or low disease activity, but it will always be there, lurking in the wings. Sometimes it pounces, sometimes it lays dormant.

This is a given.

It is also a given that so much of getting on with the business of your life is about attitude. It is about getting up in the morning and deciding that RA (or whatever) is not going to rule your life. It is about realizing that you have RA, RA doesn't have you. It is about remembering that you have a life and it comes first - you may have to live it differently, but it is still there to be lived nonetheless.

We all live with challenges. Some of us have to raise our kids without a partner, some of us have chronic pain and some don't have a job. Focusing on what we don't have, hating the situation that we're in becomes a sort of self-fulfilling prophecy, keeping us mired in despair and unable to find a way out. Hating a particular part of your life puts on blinders, makes it impossible to see the other parts that are still good, that can still bring you joy. Hating a particular part of your life narrows the definition of your life to just that aspect, making you just a woeful single parent, just an RA patient or just someone who is unemployed.

None of us are just one thing, just one part, just sorrow. None of us can live in despair all the time - moving on is hardwired into our biology or we wouldn't strive towards it. Sooner or later, the sun shines brightly again, we laugh again and we find a way to cope. And opening ourselves up to this mysterious and built-in movement towards coping is essential. Because once we find a way to cope, what used to make us weepy is now bearable and then becomes just life. And we move on and we become yet again multifaceted and dive into life one way or another. Sometimes we weep, but other times we laugh or think or debate and we get a grip on things and figure out a way to live with them. 

What dooms you to a life of suffering is not the disease. What dooms you is believing that having RA leaves only two possibilities: to be sad or to be desperate. Because it closes the door on everything else you are, everything else your life can be. It makes your life about a negative instead of positive, about cannot instead of can.

I remember a handful of things from my first year psychology course and one of them is the professor telling the class that all the psychology you'll ever need can be found in Shakespeare. Could be that he was right, because the first thing that popped into my mind when I saw that graphic on Facebook was a quote from Hamlet: “There is nothing either good or bad, but thinking makes it so.”

Once you know that, the rest comes naturally.