Rheumatoid Awareness Day: An Interview with Kelly Young

This week on HealthCentral, I wrote about a new initiative for raising awarneess about RA:

"May’s Arthritis Awareness Month covers more than 100 different types of arthritis. October 12 is World Arthritis Day. May 10 is World Lupus Day. May 12 is Fibromyalgia Awareness Day. The first Saturday after May 1 is World Ankylosing Spondylitis Day. There has been no day for rheumatoid arthritis.

Until now.

 You can read the rest of the post here.

Concrete Support

Sometimes we need emotional support, sometimes something a bit more concrete...
  

Ratings System

Yesterday, I read Trisha Torrey’s post about the ratingsystem. More specifically, how someone named Dr. Young has protested about his patients rating (judging) his services, calling some of them unfair. He also felt that people who didn't "get over it" are "bad patients." Trisha asks that since patients rate doctors, should doctors rate patients, too? I left a comment on her post, but feel the need to rant in more detail.

First, doctors judge patients all the time. None of them – even the best ones — are unbiased paragons of service to humanity. Every time they reassure you that your symptoms are caused by stress, it's a judgment. Every time they refuse to give you a prescription for painkillers because they feel you don't need it, it's a judgment. Every time they dismiss your anxiety as catastrophizing," it's a judgment. The judgments are big or small, innocuous or have the potential to cause damage, but they're there. Because that's what humans do. And sometimes, certain parts of the medical profession immortalize judgments in psychiatric definitions, thus tying this post neatly into the apparent theme of the week.

But there's more to it with this rating system. There are doctors out there who get so discombobulated by being rated that they make their patients sign an agreement that they will not engage in such behavior on websites such as RateMD or risk losing care. Yep, seriously. And in my view — and this is when I start intermittently quoting myself again — there's something that the above-mentioned Dr. Young and many other doctors seem to be forgetting.

Doctors are service providers in much the same way as a plumber, a painter or a caterer is. They are paid to provider service, in this case the medical care. As their customers, we absolutely have a right to rate the service they provide (and to go elsewhere, if it is below expectations). Being a patient is changing — we are becoming increasingly empowered, engaged and knowledgeable and that creates a certain set of expectations about the service you receive. It is disconcerting to a profession that is used to being in charge and in control of what happens in the relationship between themselves and their patients, to the point where they decide what someone else does with their life. The language used reflects this mindset: doctors don't give recommendations, they give orders. If you don't follow their orders, you are "non-compliant." The words build expectations about roles and relationship dynamics. Expectations that doctors know better, that we should just mindlessly put ourselves in their hands and all will be well.

But it won't. Because they're not the ones living within the illness. They're not the ones who have to make it work, who have to find a way to cope and manage. And, perhaps, putting yourselves in your doctor’s hands and blindly following orders can work if you have a sprained ankle or a fractured elbow, but certainly not when you have more long-term problems. But whether you are generally healthy or have a chronic illness, it is reasonable to expect good care and a professional demeanor.

I think this brouhaha is a symptom (if you will) of this long-standing perception that doctors are somehow semi-divine, certainly different and deserving of being put on pedestals. They’re not. They are paid experts and very important experts, but at the end of the day, they are paid — either directly by the patient or indirectly through insurance or government subsidy — by the person in their office. I think it behooves the medical profession to start thinking in terms of customer service, rather than getting upset that uppity patients are starting to hold them accountable for being professional when they provide their service.

Because that's it, isn't it? If we are not professional at work, we can be disciplined up to and including dismissal. We are held accountable by the people we serve, be they the public or specific customers or clients. If we are rude or unprofessional, if we provide bad service, then we can be rated in various ways. That can include a review on the Internet, a complaint to our employer or telling our friends to avoid a particular business. This does not label us as "bad customers." Customers have a right to expect a certain standard and to complain when this doesn't happen. Businesses seek out good reviews and do so by pursuing excellence in their services. When their customers complain, they don't blame the problem on the customers or dismiss the issue by calling the complainant a "bad customer" (well, not publicly, anyway) — good businesses listen, learn and change.

Maybe it's time that doctors do, too.

I should end this discussion by saying that there are many fantastic doctors out there. I'm in the lucky position of having met a bunch of them. I have also met about an equal number of doctors who were not. My rating system was to not go back or to tell my GP to not refer me (or anyone else) to a particular doctor. If clinics or hospitals had a customer service survey, I would fill it out. For both the bad and the good doctors. Because good feedback breeds even better service.

   

In Which Normal Becomes a Mental Illness

The upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) lists the new disorder called Somatic Symptom Disorder. To quote my HealthCentral post from yesterday, "you can be diagnosed with SSD if for at least six months, you have had a symptom or symptoms that is distressing and/or disrupt your daily life and you have one of the following reactions

• Disproportionate thoughts about the seriousness of your symptom(s);
• A high level of anxiety about your symptoms or health; or
• Devote excessive time and energy to your symptoms or health concerns."

When I first read this definition, my jaw hit the floor for several minutes. Then I sputtered incoherently for several more. It could be argued that I am still sputtering. There is a significant amount of concerns about this new disorder within the community of people living with chronic illnesses, as well as medical professionals and therapists (see more detail here). Today is not about those concerns exactly. Today is about something a little different.

You've no doubt heard about the concept of catastrophizing. Last summer, I wrote about this topic in a response to an RA Warrior post, so forgive me for quoting myself again. Catastrophizing is a concept discussed in rheumatology literature (and no doubt practice) stating that " people who have RA pain tend to exaggerate reports and worries about pain and its impact, leading to poor coping styles and depression."

There's a lot wrong with that concept. It minimizes the reports of people who live inside RA, of their pain, their concerns and their reality. Slapping the label of catastrophizing on a person dismisses their assessment of their reality. It invalidates their experience. In my opinion, doctors and researchers should try to imagine what it is like to wake up with a level 7 pain (on the infamous 1-10 pain scale) or more every day. Or, choosing a different condition such as IBS, what it is like to always need to be close to the washroom. Or if you have lupus, not being able to go out in the sun. Or if you have cancer having to be on chemotherapy. Etc. Is anyone likely to shrug off such experiences? Might it be reasonable to assume that this would cause some level of distress, anxiety or depression? Might it be equally reasonable to imagine that such a chronic illness could consume a significant part of your time and energy?

Eight years ago, I was in a fight for my life, buried in a severe, long-term flare. RA was consuming everything I did and everything I was. The world had shrunk to a place of screaming pain, my body becoming a place of torture. Every day, I got weaker. Every day, I lost another tiny bit of ability. I felt like I was losing my life, both metaphorically and literally. It was as if my body was slowly shutting down.

Some might call that catastrophizing. And now, thanks to the APA, someone in that situation who expresses those kinds of feelings could be diagnosed with a mental illness. There is a direct link between the two: both are an able bodied, healthy person judging a situation about which they have no comprehension. This is the ultimate arrogance of the healthy, flavored with a refusal to accept that it can possibly be "that bad." For those with little imagination, chronic illness and its consequences cannot be understood. They assess worry and anxiety about life with such a condition as "excessive" and "disproportionate." Excessive to what? Disproportionate to what? To a normal existence in good health? Certainly. To having your life consumed? Maybe not so much.

There are many good doctors and good therapists out there, people who trust the words of their patients. People who take the mental leap between a state of health and what it must be like to not have health. People who support the growing push back from those who live with a variety of chronic illnesses and conditions to be empowered and engaged and control of their care.

And then there are those who don't. Instead of listening to people who live with medical conditions and accepting their stories about what it’s like to have a chronic illness, the APA has now pathologized legitimate worry and anxiety.

The APA has rejected Dr. Frances’proposal for a change of the definition for Somatic Symptom Disorder. I firmly believe that they might change their minds if more pressure was brought to bear. Encourage your local media to cover this, e-mail your elected representative and please sign the online petition. Together, we can make our voices heard.

   

People with Chronic Illnesses Could Be Labeled as Mentally Ill

You may have seen articles about this issue around the Internet recently. The American Psychiatric Association is releasing a new edition of the DSM-V, used for diagnosing mental illness. A new disorder has been added called Somatic Symptom Disorder and it has some worrisome implications for people living with chronic illness. You can read more about this issue and what you can do to help in my post for HealthCentral:

"Did it take a long time for you to get diagnosed with rheumatoid arthritis or another chronic illness? Did your symptoms disrupt your daily life? Did you worry about your symptoms? Is your condition under control or does it disrupt your daily life? If so, do you worry about it?
According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) to be published in May, this could cause you to be diagnosed with a mental disorder.
The DSM-V is published by the American Psychiatric Association (APA) and is used to categorize mental disorders. It contains the diagnostic codes and criteria that psychiatrists, therapists and other medical professionals use when diagnosing mental illness.
A new disorder called Somatic Symptom Disorder (SSD) has been added to fifth edition. According to the definition, you can be diagnosed with SSD if for at least six months, you have had a symptom or symptoms that is distressing and/or disrupt your daily life and you have one of the following reactions

• Disproportionate thoughts about the seriousness of your symptom(s);
• A high level of anxiety about your symptoms or health; or
• Devote excessive time and energy to your symptoms or health concerns"

The rest of the post is here. Please also consider signing the online petition and sharing it with as many people as possible.

Night Shots

As I may have mentioned once or twice (okay, 35 times), I got a new camera for Christmas. I love my old camera - it performs wonderfully in natural light and has a kick-ass zoom. I've always been frustrated by its performance in low light, though. Also? It's amazing what happened in the camera world in the past four years. I love The Board Boy for advanced a vast - Dragon was less than cooperative when I wrote this - number of reasons and one of them is that he enables and indulges my tech lust. Such as giving me a new camera. My new baby is a Sony Cyber-shot DSC-HX10V. Over the holidays we wandered out to test how it did in the dark. All of the shots in this post are SOOC (Straight Out Of Camera) with no editing.

The Market's all lit up for the holidays.

This makes the Flatiron Building look like the mothership has landed

It was cold, a few days after we'd been repeatedly dumped on by the weather gods

Not too far down the road there's a fairytale area of twinkling lights

We weren't the only ones out - a woman brought her daughter to look at the magic

 

On the way home, I found this iced-up planter bathed in blue light

 

Needless to say, I'm pretty impressed with the camera's performance. I'm still learning how to use it, but does it ever come through in low light!

Chronic Pain and Writing Practice

After my big flare eight years ago, I decided it was time to do something about that lifelong dream of being a writer. To stop being practical and having a day job and throw it all into getting off the pot, so to speak. Never mind that I hadn't had a day job for quite a while at the time. The point was that I had gotten a second chance at life and when that happens, you stop procrastinating and get serious about honouring it.

So. There I was, set on being a writer and wondering how to do it. Naturally, that meant research. I read books about writing and over time, I noticed that everyone talked about two things as being essential to the craft.

The first was journaling or freewriting. In her excellent book Writing Down the Bones, Natalie Goldberg recommends that you start each day "writing your pages." This involves sitting down with a notebook and a pen and writing without stopping for a set amount of time, such as half an hour. This helps develop your writing skills without involving your inner editor. Many writers recommend this as essential to nudge your creativity — there's something about using a pen (as opposed to a computer) that accesses the subconscious soup.

The second was spending time writing, following the wonderful saying attributed to Dorothy Parker: "writing is the art of applying ass to seat." I read about Stephen King writing from 9 to 1 every day, someone else always writing 10 pages, another person never left their computer until they'd done 3000 words. Etc.

Uh-Huh. Sure.

When you are a writer who has chronic pain, both of these recommendations are completely intimidating. I can still write with a pen, but not for very long — freewriting for half an hour every day would wreck me for the rest of the day! As for writing for four hours, 10 pages or 3000 words? Not going to happen. At the time I had yet to figure out how think creatively while dictating to Dragon and my daily typing limit was 400 words. Even now, when I am much stronger and primarily use Dragon when I write, spending that much time at the computer today would wreck me to the point that I wouldn't get anything done for the next four days. So what's a writer with chronic pain to do?

You mess with the rules to find a way that works for you. For me, freewriting isn't ever going to happen. I understand the principle and would love to be able to do it — I think it would bring out something very interesting in your writing practice. If you can write with a pen for a little while, try to spend 5 minutes meditating before you start freewriting. This can help you skip over the first 10 minutes that are about shutting up your inner censor. Trying some of the other writing exercises in Goldberg's book can also be really helpful. The woman knows what she's talking about.

Instead of setting a goal of writing a certain amount every day — something that will only lead to failure when you live with an unpredictable health condition — I set a different goal. At first, I made writing a part of everyday. On good days, it was actual writing. On days where I hurt too much, it was reading about writing or thinking about writing. Whenever I got frustrated at the slow pace, I’d remind myself of something I'd read somewhere: Laura Hillenbrand took 10 years to write Seabiscuit. I've since heard that it wasn't quite that long, but it was tremendously helpful at the time. Eventually, as I could spend more hours working and writing, I split up my workday into two and still do this. I work for several hours during the day, have my Mandatory Rest Period and after dinner, I work for another one and a half hours (or that's the plan, anyway. I've been exceeding that for a while). By breaking my work time in two, I work at a pace my body can handle, allowing for rest in between times at the computer. Over time, it's allowed me to  to build strength and stamina and often gets more writing done than I realize.

The point is not how you write or how much you write. The point is making writing a habit. Creating the discipline to apply your ass to a seat every day to click into the place in your head where writing happens is the key. Even if you can only write 400 words a day, doing so for four months will give you a 48,000 words. That’s a good first draft of a book.

Perfect Birthday Wishes

Today is this handsome man's birthday

This quote by modern philosopher Slavoj Žižek in the movie Examined Life resonates with both of us "Love is not idealization. A true Lover knows that if you really love a woman or a man, that you do not idealize him or her. Loves means that you accept a person, with all its failures, stupidities, ugly points and nonetheless the person is absolute for you, everything that makes life worth living, that you see perfection in imperfection itself. And that is how we should learn to love the world.”

There is no such thing as the perfect man or woman. There is, however, a person who is perfect for you. And I'm very lucky to have found the man who's perfect for me (and who luckily thinks I'm perfect for him, too, or things might have gotten uncomfortably stalk-y).

He normally prefers to be a bit stealth, but I believe you should be the recipient of much fuss on your Once A Year Day. What better way to ensure fuss than asking the blog to help celebrate?

Happy birthday, David (aka The Boy)!
 

Real RA: Talking with Your Hands.

There is a legend in my father's family. A long, long time ago, a Spanish mercenary supposedly had his way with a female ancestor. Equally supposedly, this explains why families with two children always have one with dark hair and one with blonde hair. Writing it down like that makes it look completely nonsensical, but it's a good story and I've never been one to let the facts get in the way of a good story. In my immediate family, we also used this legend to explain why my dad talked with his hands much more than is the norm in Denmark. Naturally, since my sister and I grew up in a household where gestures supplemented speech — combined with whatever diluted drops of Spanish mercenary blood still runs in our veins — we also talk with our hands a lot.

When RA has its way with you, damage in the joints can lead to deformity. I never liked the word deformity — it sounds so Quasimodo-like. Gnarled isn't much better, so let's skip right over attempts to find the proper word for joints that don't quite look like the norm. In my case, RA has wrecked every joint. I have, leading to contractures, fusions and some pretty odd-looking body parts.

Not surprisingly, it’s also affected how I move, because contractures, fusions and — okay, I'll say it — deformities mean you don't move the way others do. In my head, I am as graceful as a dancer, but in reality, I move like a bird with small, jerky movements.

Through Show Us Your Hands! I've heard many stories of people who have hidden their hands for years and now, for the first time, has shared photos of their hands with the world (it's one of the many reasons I love the work we do). I never hid. Maybe it's because my hands have looked odd since I was a child, so I was used to it. And maybe it's because I got JRA when I was four and started using a wheelchair at 16, so I’ve never been able to pass for "normal." Sometimes, RA being really visible can be a blessing.

And this is where the blood of the Spanish mercenary enters the picture. Because I talk as much with my hands as the rest of my family. It does look rather different, though. Aforementioned contractures, fusions and okay, deformities mean that my gestures are somewhat garbled versions of the original. 

I don't know if others need to know me for a while before they understand my gestures without thinking about it, but regardless of how they get there, they get there. My family and friends instinctively understand that when I point, they have to look at the direction of my hand more than my finger. They automatically translate my brief leaning forward while doing a small, truncated wave with my right hand into a sweeping 18th-century flourish of a bow. Etc.

Which brings me to today's illustrative point.

Gestures take many forms. Some we use in more formal professional occasions, some are reserved for private moments. Some can be used anywhere and around any one, others are not quite polite. And there's a particular gesture which is used to indicate a suggestion that someone should take a long walk off a short pier that I'm want to use whenever The Boy gets to be too much of a smartass. Most people call it flipping the bird. Not in my house.

In my house, we call it The Flipper.

So, between the bird-like movements and the gesture, does that mean I'm a penguin?

(that great ring was a gift from my friend JJ when the manuscript to The Book was finished)

All photos in this post by The Boy.

 

Watershed

Sometimes, change happens so gradually that you’re not aware of it until after it’s well underway. And sometimes, you can pinpoint the exact moment your life changed, naeeowing the point down so precisely that the watershed between Before and After is a matter of minutes.

On January 7, 2005 at 3:35 PM, I got my first shot of Enbrel. I went home to have a nap and when I woke up at 6 PM, I was a different person. I could feel the drug working. It took weeks, months and years to get stronger – the amazing thing is that today, 8 years later, I am still getting stronger – but that’s the moment. January 7, 2005 at 3:35 PM is my watershed.

I often refer to it as The Miracle, capital letters and all, because that's what it was to me. I write about it often, because I think of it often. I believe that when you are the recipient of something so profound as the gift of life, it should be honoured. And I talk about it, too, because I am proof of the reason to hope that even the most stubborn cases of RA will eventually find the thing that works. After 40 years of nothing working for me, finally something is. It hasn't solved all my problems — there is still pain and plenty of it, flaring of symptoms, the addition of fibro and my disability isn’t going anywhere, either. But all of that is largely manageable and noise that varies from blaring to muttering in the background. What is important is the foreground and that's where I live my life.

And this is the amazing part of this miracle, this thing about living my life. Because I am. Everything I do is because of 3:35 PM on January 7, 2005. The fact that I have quality of life is because of the miracle. That I can be part of my family, contribute to my community and work is because of the miracle. That I live independently instead of in an institution, that I have the ability to look after another living being, that I do my own banking and grocery shopping and that my dining room table is a mess because cleaning bores me, not because I can't clean. That I have found the love of my life, that I'm exhausted all the time because I work too hard and that I laugh every day. That I am alive.

This is why I call it The Miracle. Because without it, I would have none of that which makes my life worth living. Or maybe not even life itself.

Today is the anniversary of me getting my life back, but it is more than that. It is an anniversary, a birthday and my New Year's all rolled up into one quietly personal day of reflection and celebration and more than a bit of awe.

That is, usually quiet. This year, I'm sharing the joy because of something else. Something that could not happen without The Miracle. My lifelong dream of having a book with my name on it is thisclose to being a reality. We're still working on getting the ducks all neatly lined up in a row, but sometime in the next few weeks, it’ll be out there. And it’ll look like this

I can't wait to share it with you all! 

Snow Snow Snow

There was supposed to be a post with words today. Y'know... thinking. But I've been crashing for 10 days, winter's giving me some "interesting" pain levels and I don't have the energy. So instead, more photos.

Canadian winter has come back and is making up for lost time. In the past week, we've had three significant snowfalls (i.e., enough that I'm housebound). It's wearing a bit thing, but I'm enjoying the opportunity to get out there and play with my new camera.

It all started Boxing Day when we got 10cm, making for a very pretty evening

The next morning, everything was covered

It took a few days before I could go further than the sidewalk in front of my building

 

Yesterday, snowfall #3 arrived, with big fluffy flakes making my little street look more and more like Narnia

Beautiful, cold and a bit of a pain in the arse. Ahh, winter... It's what makes us appreciate summer so much.
  

Blushing Furiously

There are some truly astonishing people out there. Some of these astonishing people have nominated me not for one, but three categories in the WEGO Health Activist Awards: 

I am completely overwhelmed and massively grateful. You can see all the nominees on the WEGO Pinterest page - I'm not listed yet, but they're working on catching up. 

Thank you so much to the people who nominated me. This means a lot.