Tuesday, January 31, 2012

Notes from Editing Hell

   
And it continues… The editing, I mean. Although I finished writing The Book about six months ago, I am still editing and rewriting and then editing some more. And it is kicking my butt.

I take great comfort in reading about other people's road to publication. It took Toni Bernard six years to write How to Be Sick (if you haven't already, join RA Guy’s book club reading Toni’s book – it’s a great way to read a terrific book). Laura Hillenbrand, author of Seabiscuit, has Chronic Fatigue Syndrome and it took her 10 years to write her award-winning book. David Gaughran, author of A Storm Hits Valparaiso, took five or six years to finish his novel and has detailed his struggles with the never-ending edits and rewrites on his excellent blog. These stories reassure me that I am not a hopeless slacker or so incompetent that I really need to stop any thoughts of publishing a book.

In related news, going through your book over and over and over again with a fine-toothed comb, looking for What Is Wrong will very quickly convince you that you're a terrible writer and have absolutely no business whatsoever even considering publishing a book.

In equally related news, I really miss writing. Editing is necessary – eventually loathsome, but necessary - but it doesn't tickle that creative spot in my brain. Someone somewhere once did a blog entry in which they asked" why do you write?" I answered that I write because it makes me happier than almost anything else in my life. There's nothing like disappearing into a different world, noodling through a thought process, obsessing about an idea and wrangling it to the ground and onto the page. And there's nothing like it when it works and you know you wrote something good.

Discovering that writing is as much about editing as creating the original piece has been a real eye-opener for me. This is a point where you might find that my hair color is influencing my ability to think, because… well, duh. I've never done it to this extent, though. I've edited myself, been edited by others, but nowhere near this kind of process. Thankfully, I am not going through it alone. My Writing Buddy had the first go as I wrote chapter by chapter and then I went over all of it myself again. The next step was passing on my manuscript to Trevor, whose fact checking was invaluable and then I went over all of it myself again. As we stand now, The Boy has it and as he is giving me back chapter by chapter, I go over each two more times and then start again on each individual section. And it is dizzying.

One of the ways I check whether what I've written make sense, includes all the appropriate words and no Dragon misunderstandings is to read each chapter aloud to myself. It's one of the best tools I have for checking my writing. This method also checks that my sentences aren't too long - using voice recognition software has had the interesting effect of lengthening the amount of words I used within each sentence. It turns out that I blather much more when speaking then when typing. Who knew? (yes, I know - everyone who’s ever talked to me were aware of this). How do I decide whether there are too many words in the sentence? If I run out of breath halfway through it. Clever, no? The only problem with this is that when you read somewhere in the neighborhood of 50,000 words aloud to yourself several times, it increases your lung capacity. My lungs are in better shape, but my sentences are getting longer.

I have seen different answers to the question "when do you know you're done?" One person believed that you're done when you're sick of your book, another said when your spousal equivalent is sick of hearing about it. I'm going to add one more: when my blog is sick of reading about it. So let me know when that time arrives, 'kay?   



Going back to the saltmines now.
    

Friday, January 27, 2012

A Whispered Thank You

   
I'm a lucky woman. Thanks to you, my post Sensitive to the D-Word won second place in the Best Blog Post category of the 2011 Canadian Blog Awards. Because of you, more people now know about disability discrimination. Thank you.

And why the whispering?

This is how determined your body can be to make you sit still: Woke up Monday with a screaming back that didn't want me to move. Despite claiming I'd listen, I didn't – big surprise - and worked anyway. By Wednesday, my body was so disgusted with me that it upped the ante and gave me laryngitis. Since I can't write much without using Dragon Naturally Speaking to write, this meant working wasn't possible. I sort of did anyway (tip: don't type if you normally have to use Dragon. Or so my shoulders told me yesterday). Saw my doctor for my Humira shot and discussed the voice thing. She told me to stop talking until it no longer hurts to do so. Exactly how I'm supposed to know that it no longer hurts when I'm not allowed to talk was unclear.

No talking?? Cruel, cruel fate...
  

Tuesday, January 24, 2012

Show Us Your Hands! Establishes Founding Committee to Help Raise Awareness of Inflammatory Arthritis

   
Show Us Your Hands! Establishes Founding Committee to Help Raise Awareness of Inflammatory Arthritis

 (January 24, 2012) - Show Us Your Hands! is pleased to announce the new collaborative effort of three leading advocates from the autoimmune blogging community. Lene Andersen (The Seated View) and Cathy Kramer (The Life and Adventures of Cateepoo) have joined forces with RA Guy (Rheumatoid Arthritis Guy) to organize creative community projects and effective awareness campaigns aimed at increasing the public’s understanding of inflammatory arthritis.

Show Us Your Hands! started as a community collage project in December 2011. The interactive digital collage and commemorative poster include hundreds of photos of the hands of individuals who live with inflammatory arthritis, and represent people of all ages from around the world. This inaugural project serves not only as a symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands. New photos continue to be added to this community collage on a regular basis.

Upcoming initiatives will build upon the overwhelming success of and positive community reaction to this initial project. The three members of the founding committee are currently working on establishing an organizational roadmap, and in the coming weeks will be announcing the details of the first of many upcoming projects and campaigns. “Reading through the responses to Show Us Your Hands! and viewing the photos of all the hands, I am overwhelmed by the strength of our community.  Together we have built a relationship of understanding and compassion to replace what for many has been a void.  As Show Us Your Hands! moves forward, I am excited to see that strength grow,” says founding member Cathy Kramer.

Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of autoimmune arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren's Syndrome, Still's Disease, and Systemic Lupus Erythematosus.

Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.com. Show Us Your Hands! can also be found on Facebook and Twitter.

Contact:
Show Us Your Hands!
showusyourhands@gmail.com

Monday, January 23, 2012

Once We Were Caged

   
This post is my commemoration of the International Day of Mourning and Memory of the Lives of People with Disabilities. This is a day of remembrance of those who were institutionalized, abused and killed for being different. It is a day to remember those who came before us and who fought hard to make the world a better place for people with disabilities of all kinds. 

I had been in the hospital for several years, waiting for hip replacements. It was the culmination of a long period of hospitalizations. Since I was diagnosed with juvenile rheumatoid arthritis, finally, at age 9 after living with pain and swelling since I was four years old, I had spent more time in institutions than out of them. And now, having had a double hip replacements, I could sit up again, got a power wheelchair and halfway through my 16th year, it was time to leave.

This was also the time that one of the senior doctors took my mother aside and earnestly spoke to her about discharging me into another institutional setting, a group home for children with disabilities. Because taking me home would be "far too difficult." Because many others in her situation "would have given up." Given up their kids.

I wasn’t there, but I know my mother shot him down in flames. I wasn’t there, but I can imagine that she gave him The Look. The look she has that says more than words, that withers and shames. And she and my father took me home and gave me the biggest gift of all: a normal life.

I was lucky. I had parents who had strong opinions about where their children belonged and who fought hard against the pressure from without to tuck me away in a place where I would be less difficult.

Difficult for whom? My parents? My extended family? My community? The doctors?

Difficult why? Because I needed care? Because I needed a different way to approach school, transportation and all the other things that come with a teenager’s life? Difficult because I looked different, lived differently? Difficult because my presence in the community, in society meant having to face the reality that not everybody is the same? Because it meant having to accommodate the different?

Even so, because there was no choice, I spent years in and out of hospitals, many of them in a rehab hospital on the northern coast of Denmark. It was there that I got a thorough education in what it was like to be institutionalized. Because there, they had a philosophy of dealing with the children in their care. A philosophy deeply grounded in the belief of cold professionalism, of not indulging our emotions, of not responding to pain, of squelching any expression of individuality.

There,we were all dressed alike in blue track pants and red sweaters. There they ruled our lives, keeping us in the dark about medical tests and procedures. There you were expected to deal with the pain of rheumatoid arthritis quietly and without fuss. There you bit down on the pain of the needle going into your joints or suffered standing naked and alone in front of a strange man taking a picture of your body to record the progress of your disease. There you were expected to eat what was served without question or complaint. There you suffered homesickness alone and without comfort. There I learned that crying doesn't change anything.

I was lucky. Most weekends, I got to go home to my family, to be surrounded by love. To have an antidote against the chill, against the grating demand to not express what I felt, to be an automaton. An antidote against the inhumanity that framed our lives in that building. Because of that, I managed to hold on to my soul.

I don't blame the parents who went before and who followed the advice of doctors, giving their children to institutions. That was the world they lived in. In that world, the rest of society wasn't made to be inclusive of different. In that world, you did what the doctor told you to do, because they knew best. Who I do blame is the medical and so-called caring professions who made those institutions places with no warmth or emotion, places more like prisons, places of abuse and brutality. Places that damaged hearts, souls and bodies, places that killed. Sometimes outright, sometimes merely murdering the chance to connect to all that makes life worthwhile living.

And then the movement to deinstitutionalize started. Was it with parents like mine who refused to believe an authority that told them they couldn't cope with taking care of their child? Was it with those who escaped, somehow, into the world and told their story? Because of them, we now have the right to live integrated into society. The right to receive services like attendant care that allows us to live independently and participate in our communities. Not enough attendant care and sometimes, not good enough either, but it is there. So are other services, other agencies funded and mandated to assist people with disabilities of all kinds live independently.

Because of those who came before, we are here. We work, we love, we go shopping, we laugh, we go to restaurants. Because of those who came before, we now have laws like the ADA and AODA that guarantee our continued right to be here. Laws that enshrine the obligation of the norm to make room for the different.

We are here. Thank you.


As part of the lead-up to today, Dave interviewed Dana Masa, who co-wrote and performed She Never Knew She Never Knew..
   

Thursday, January 19, 2012

International Day of Mourning and Memory

   
Dave over at Rolling Around in my Head is spearheading an initiative to create a day of awareness and remembrance called the International Day of Mourning and Memory of the lives of People with Disabilities. In his words, the day would:

"be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember."

If you want to participate, write a blog post about what this means to you for Monday, January 23 and let Dave know. There's also a Facebook page for the event.
 

Wednesday, January 18, 2012

The Unexceptional

   
I have become a wuss.

There have been signs that I have deteriorated into a state of perpetual whining, what with the repeated mentions about having no energy. It was starting to bug me, so the other day I asked The Boy for more objective assessment of my health status. And he said something interesting. Well, he often says something interesting, but this particular thing was about me, making it even more interesting. Because it's all about me, y’know.

The Boy said that I was miles ahead of where I was two years ago and I knew that. It's something I'm grateful for every day, this part where somehow, I keep getting stronger. However, instead of basking in this statement, I asked for details about the past year because to me, it feels as if I never quite got over that flu I had last June. He opined that my energy fluctuations seem different - instead of having two weeks of mad energy and then collapsing for another two weeks, I seem to be more up and down every few days or so. At which point I opined that maybe if I didn't burn through the energy when I have it, it wouldn't fluctuate so much and this led to another epiphanette (i.e., a wee epiphany) that perhaps now that I have a better handle on managing what I do in terms of my pain levels, my next challenge is to do the same for energy levels. But that's not the topic of today's post. My whining is.

Because The Boy also mentioned that when I am in pain, I seem to not cope as well as I did before, wincing more and being more verbal about my unhappiness about the pain. And I've been thinking about that.

I seem to be experiencing a period of doing pretty well. I did pretty well last summer, had a reminder of what flares of both RA and fibromyalgia are like in the fall, but seem to have wandered away from that. It might be that we are having an unusually warm winter, the benefits of ultrasound, a decent level of Humira or something else entirely or all of the above. The bottom line is I'm doing pretty well (and knocking wood frantically to guard against jinxing myself by saying so publicly). Since last summer my body has decided to react really strongly to medication, to the point that I take almost no opioids and when I do need a bit of help, one-third of a Tylenol Extra Strength will usually do the trick. One third. That's all. If I take more than that, the side effects are very uncomfortable.

Which brings us to the cause of the whining. When you have a lot of pain all the time, it becomes part of the background noise, the soundtrack to your life. When you have a lot of pain all the time, you adjust your experience of it by putting on filters that soften or mute the messages your body sends you. In my post about pain scales, I talked about how people who live with chronic pain hardly ever experience no-pain and therefore, their state of 0 is what for others would be a 2. When that happens, the entire reporting of pain becomes skewed - your 3 is a healthy person’s 5, etc. What has happened in my life is that as the constant high levels of chronic pain became more like constant fairly medium pain levels, my perception of my pain snapped back into almost-normal. All of a sudden, the pain that used to be a 3 is now a 5 and let me tell you, it's a bit of a shock to have your pain tolerance messed with like that.

I have been listening to a CD called Great Conversations with Michael Enright. Enright is the host of CBC Radio’s The Sunday Edition and the CD is a collection of interviews with some pretty great writers. One of the segments is Enright’s conversation with Salman Rushdie in September 2002 and they talk about the before and after of the fatwa - what happens in the life when you are under the threat of death, shadowed by burly bodyguards and now travel unencumbered. Enright asks "Do those things stay with you? Is there still a kind of symptomology that follows on?" Rushdie replied that it doesn't. "The urge towards normality is so powerful that regaining normal behaviour happens like snapping an elastic band, it happens more or less at once. There were one or two days where I felt a bit weird standing on the sidewalk hailing a cab after years of having armoured cars, but it felt like a treat … within a couple of days - literally one or two days – the feeling of normality came back, it became just catching a taxi and why isn’t there one."

He went on to say something that put everything into place for me: "Our desire to go back to what is unexceptional is so great that we adapt back to that with high speed."

And that's it. I am currently experiencing a period of the unexceptional in terms of pain levels. It became normal so quickly that my experience of the pain I do have also normalized with the speed of light. I no longer marvel at how little pain I have, instead I wince when I feel stiff and sore. It no longer astonishes me that I can fall asleep – and stay asleep - without drugging myself senseless, instead I complain when I need to take a sliver of a muscle relaxant. Since I no longer have to deal with high levels of pain, when the pain does spike, I feel it much more keenly. As there currently is no need for an ironclad pain tolerance, I no longer have one.

I'm really hoping this sticks around. Although, I might try to be less vocal about how affronted I am when the pain pokes through.
   
This Friday January 20 is the last day to vote in the Canadian Blog Awards, My post Sensitive to the D-Word is nominated in the category of Best Blog Post of the  this year. If you liked it, please vote! Also check out the other nominees - many are terrific. To mention a couple, Screw Bronze! is up for Best Health and Best GBLT Blog and Rolling Around in My Head is up for Best overall and Best Personal Blog.
   

Monday, January 16, 2012

Photoshoot

   
I'm plotting a certain something related to The Book. Something that requires proper photographs as opposed to snapshots, so I sent out an email to the talented Raff, a friend of my sister's, who has her own production company. Did she know a photographer? Did she ever. She put me in touch with the equally talented and lovely Sophie Kinachtchouk - take a minute to do drool at her work. She also does amazing wedding photography. I cannot say enough good things about Sophie - she's easy to work with and if you're at all self-conscious in front of a camera, she makes you relax and have fun in no time.

These are a few of the great shots she took. 
   

We decided to wander out and about in the neighbourhood to find fun places to shoot - it was a lovely day. Halfway to the corner, I realized my funky new glasses are Transition lenses.So we pretended I was wearing contacts again. I have only very fuzzy mental images of Sophie pointing a camera in my direction.

 

 
 




Thank you, Sophie! I had a blast and love the shots!
  

Thursday, January 12, 2012

The Best We Can

   
Back to work I went on Monday, humming that song from Snow White (except I always thought it was "it's off to work we go" and now it doesn't make any sense at all in this post). Okay, it's entirely possible that I wasn't humming - I spent my week’s vacation having a massive sinus infection and feeling pretty miserable for most of it. Naturally, I felt better just in time to go back to work. Given how often that happens to me, I may stop taking vacations.

Anyway! By Monday evening, I was already exhausted. I'm a lot more tired than I think I used to be last spring. It's possible that I'm doing more now, maybe I'm not fully topped up on Humira after all or maybe it's something else altogether. All I know is that without the biweekly B12 shots, I'd be toast. And I keep wondering how other people do it. Not healthy people, because I don't expect to have the same energy level as someone who doesn't have RA and fibro…

OK, that's not entirely true. Based on my endless list and propensity to involve myself in interesting things, I obviously expect to have much more energy than I actually do. Don't you hate it when you screw up your own argument in the middle? The point is I'm frustrated to no end. I have a bunch of things I'd like to do, not enough time to do them and although my pain levels are fairly decent (knock wood), the tired is kicking my arse. I've gotten far enough that I admit I have a problem, made a resolution to find a way to work smarter, not harder, but am still sort of stuck in the theoretical of that.

Yesterday, at the end of my HealthCentral interview with Kelly from RA Warrior, I asked if we could detour into something personal. She sounded a teensy bit cautious – the where is this nutbar going hung thick in the air between us - but agreed. So I asked her the infamous question.

How do you do it all? And not in a superwoman kind of way, but how do you do it all when RA and all its attendant hiccups get in your way?

"I don’t do it well," she said. And right there, I could feel a weight lifting from my shoulders.

She went on to say "I go through phases of being good to myself and give myself the rest I need and then I feel this urgency and work into the wee hours of the night and feel very anxious about it." And this is the point where both of us almost simultaneously said "and then you crash." She told me of having been 12 weeks behind on her email and now "only" six weeks. Kelly talked about compartmentalizing, of every now and again actually admitting that you can't do it all and saying no to opportunities that come your way (this could take some practice). Then she mentioned having to contact someone asking to delay a deadline due to having overbooked herself and getting a huge gift with the reply e-mail. Because the person wrote back "what a blessing it is that you have all those things going on."

Wow, right? This was a reminder to me to turn the prism, to look at it differnetly. About not berating myself because I can barely keep up, about not getting caught up in the stress and anxiety, but, in Kelly's words "celebrate that this many people and opportunities are in my life."

I am a lucky, lucky woman. Also very tired, but I'm working on that.

This part of this conversation with Kelly was one of those gems, a moment of shining realization that I am not alone. That down there in central Florida, there's another woman who knows exactly how I feel and this normalized it for me. I no longer feel guilty (not much, anyway), have forgiven myself for not having the energy of 22-year-old professional athlete (for now, anyway) and remembered that all we can do is our best. Doing your best doesn't mean doing everything on your list. Doing your best means doing what you can with the resources available to you. No one can ask for more, least of all yourself.

This is what the Internet does - it affirms, it liberates and it empowers.

And I realized one more thing. That on the surface, a lot of us probably look like it's all effortless. Like ducks. You know what I mean - that quote that we all know and which apparently is by Michael Caine: "Be like a duck. Calm on the surface, but always paddling like the dickens underneath." 

We’re not, though. But we do the best we can.


   
Friday January 20 is the last day to vote in the Canadian Blog Awards, My post Sensitive to the D-Word is nominated in the category of Best Blog Post of the  this year. If you liked it, please vote! Also check out the other nominees - many are terrific. To mention a couple, Screw Bronze! is up for Best Health and Best GBLT Blog and Rolling Around in My Head is up for Best overall and Best Personal Blog.
   

Wednesday, January 11, 2012

RA Warrior: An Interview with Kelly Young

   
Every now and again, I get to do something for my job that doesn't feel like work. Yesterday, I spoke to Kelly from RA Warrior - after years of reading each other, we finally met on the phone. It was more like a chat with a friend than an interview. I love my job.

"'Imagine if the first thing you found when googling RA was the opinions of patients..."

Kelly Young is a woman with a mission. She would "like to see other patients do better, learn more and be empowered." To that end, she is a strong advocate and works hard to provide people who have RA with accurate information."

You can read the rest of the interview here.
  

Sunday, January 08, 2012

Faces, Earthquakes and Ebola: Making Pain Scales Work in Real Life

   
RA Warrior is doing a blog carnival about pain scales. This is my contribution. 

"Please rate your pain on a scale from 1 to 10." Said by many doctors and it sounds pretty simple, right? It isn't. When you live with chronic pain, rating that pain becomes a really complicated question.

Pain scales are an attempt to assign an objective measurement to a subjective feeling. And it gets very subjective and imprecise. Let's start with the issue that we all have different pain tolerances - you might find the pain of a bee sting takes up a lot of room in your mind and body, whereas the person next to you shrugs it off.

Then there are filters. When you live with chronic pain, you learn to filter out the messages your body sends you unless they're really annoying. A pain scale doesn't really start at 1, it starts at 0, i.e., no pain. When you have pain all the time, your lowest level of pain takes over the 0 spot, but it is not the same as someone else's no-pain. You slap some filters on things and pain doesn’t really get noticeable until it’s about a 3 or a 4.

When you live with pain on a chronic basis, your own pain tolerance waxes and wanes, as well. At times - especially in the beginning of your life with pain - you might rate it at a higher number because it's the most pain you've ever had. As other joints join the circus and as your disease gets worse, you begin to realize the truly interesting upper reaches of pain and you adapt again. What was a 7 is now a 5. As Kelly mentioned, this means you adapt your reporting and sometimes your experience of pain so it fits into the scale, instead of the scale fitting into your experience. One of the ways I've personally interpreted the pain scale to do this is to get really specific about what happens between each number. As I've gotten more experienced in the ways of pain, I've realized that in order for those interesting upper reaches of pain to fit within the scale, there can't be an equal interval between each number. Instead, each number reflects a much larger increase in pain. For instance, the difference between a 1 and 2 is significantly less than that 5 and 6. Pain is like earthquakes, this way, but I haven't seen that comparison of pain scales to the Richter scale anywhere.

Enter the faces. In an attempt to deal with the not-at-all-objective and really-hard-to-generalize 1-10 scale, the Wong-Baker FACES Pain Rating Scale was developed. This associates the number on the continuum with faces and description of pain.


And it’s better. It even specifies that crying is not necessary for pain to be rated a 10. This scale allows (somewhat) for the adaptation that happens as you pain tolerance goes through its own ups and downs. For instance, having really high levels of paying for a protracted period affects your ability to cope with it and that can also messes with your pain tolerance. If you look at things as objectively as possible, your pain may have been an 8 for three weeks, but because you are worn down and raw, your reaction may be the same as if it were a 9. The Wong-Baker is better, but it's not perfect, it still has too much fuzziness for my taste, the report of pain too dependent on your own coping mechanisms to be a reliable measurement.

And then there's how the pain itself has different faces, depending on its origin. How can you compare the sharp, clean, localized pain of surgery (The Ginsu) with the Dirty Cotton pain of an RA flare? When the pain feels completely different than another type of pain, can you accurately rate its intensity? But I digress into philosophical…

So what's missing?

One of my favorite alternatives is Hyperbole and a Half’s adapted FACES with their accompanying description (this is where ebola enters the picture). Go take a look - it's brilliant. It works because of the descriptions. For instance, 2 is described as "I probably just need a Band-Aid" and 10 is "I am actively being mauled by a bear." Now that's helpful and getting closer to my point.

The best pain scale I've ever seen was when I had a routine mammogram-equivalent test at the Breast Centre at St. Michael's Hospital in Toronto. As I was waiting for the doctor, I noticed a poster with an adapted version of FACES on the wall. With each face - and there were 11 of them, not six - was an accompanying description of the impact of the pain. Not just the "hurts a little bit" or "hurts whole lot" from the original, but words like "I need to take pain medication," "it’s difficult to get dressed and get on with my day" and "all I can do is rock and moan" (this is not an accurate quote - I didn't think quickly enough to ask for a copy at the time, but will at my next checkup).

And that's exactly what's missing in pain scales. When the difference in pain tolerance, coping mechanisms and general mood can affect your rating from day to day so significantly, it effectively renders a numeric scale invalid. However, basing the assessment of the pain on the impact it has on your ability to lead your life is truly meaningful. It speaks to the central issue of living with pain, namely the living with aspect. Whereas a numeric scale may work in an acute case, such as a sprained ankle or broken arm, for those of us who live with it every day, the only thing that matters is how it interferes with your life.

And that's my answer to Kelly's question. I'd like to see something like the St. Mike's Breast Centre’s pain scale become the norm. In order for that to happen, it can't be led by doctors who have only a theoretical understanding of pain. Instead, this kind of change has to be driven by those of us who live with chronic pain and who know pain from the inside. 

   
      

Thursday, January 05, 2012

The AID Principle or How to Open a Door

   
Sometimes, you meet someone who really gets it.

I was swinging by my dentist with the latest payment on the crown that cost enough that I'm sure it's made of a giant ruby. Since nobody was about on the sidewalk, I knocked on the window and waved madly to catch the attention of someone who could open the door for me. A patient in the waiting room saw me and made gestures requesting whether I wanted help with the door. I indicated in the affirmative and she came out to join me.

Helpful Person: is it best if I hold the door open from here or come outside?
Me: Come outside, please.
H.P.: that's what I thought. When my kids were in a stroller and people would hold the door for me, the other way would be more difficult.

And then we laughed companionably, continued chatting and I entered my dentist's office without any further issues.

I would like to nominate this woman for Best Assist of the Year for demonstrating a thorough understanding of the 3-step principle of helping a person with a disability (well, anyone really). I call it AID.

  1. Ascertain that the person needs help. In this case, the knocking on the window was a pretty obvious sign and when she mimed helping with the door, my smiling and nodding like a demented woodpecker further cemented the deal.
  2. Inquire how assistance will be most helpful. Instead of insisting to do it her way (as in another recent experience with someone desperate to help), this H.P. asked which way she should open the door. Many people stand inside and push the door open with their hand. This tends to only be helpful for the ambulatory. Unless you’re Hercules – and most people aren’t – it’s difficult to push the door open as much as it needs to be. More importantly, as you drive the wheelchair through the door, they will need to get their feet out of the way and this means putting less pressure on the door, resulting in a hopeless tangle of door and wheelchair. Taking a few steps outside, getting out of the way and holding the door fully open is usually best.
  3. Discover that you can easily associate a situation in your own life with the present one. Sharing a commonality makes the whole thing easier. This particular H.P. realized that using a wheelchair was very similar to traveling with a stroller and instantly remembered what was most frustrating about that experience.
Simple. Now we just need to tell the world.
  
   

Tuesday, January 03, 2012

Real RA: It's Not Just About the Jar

   
The drug commercials like to show couples walking on the beach with a dog (it's always a beach with a dog), but real RA is not like that. The image of remission is a return to sparkling health with no lasting effects, but real RA is not like that. This is the first in new series of posts about the ways RA affects your life, the unvarnished version. 

Last week, Kelly over at RA Warrior tweeted a link to a post about the silly things people with RA say. It’s a brilliant list of the overly optimistic things that come out of our mouths, such as committing to being somewhere early in the day (impossible because it takes a while to get going when you have RA) or the "me do it" ridiculousness that inevitably brings about a flare in symptoms.

Opening jars - or rather, the inability to do so - is often mentioned as the ultimate example in frustration, smacking into your limits and plain humiliation. For Kelly, it's not a jar, it's a set of heavy blinds. For me, it's changing batteries in various electronic doodads. I can deal with a few – my camera and the remote controls - but most of the time, changing batteries is beyond me. Well, the actual digging batteries out and putting batteries in is usually doable, but getting the blasted cover off whatever contraption I'm wrestling with is impossible. It's an annoyance, but what's the big deal? I have attendants coming in to help me, I have friends and family around and in the last couple of years, The Boy has been a wonderful addition to my life, not just emotionally, but practically, as well. So far, so good. But there's one thing you can't ask just anyone to help you with, especially in those single pre-boyfriend years.

The vibrator.

Doctors don’t like acknowledging that we’re sexual beings, but just because you have a chronic illness or disability doesn't mean other bits of you have gone to sleep. However, when your hands, elbows and shoulders are wrecked by RA, technical assistance can be necessary during moments of getting in touch with your baser instincts. So I did what any liberated modern woman would do: found an accessible and disability-friendly “adult” store, dragged a friend along with me and giggled my way through a conversation with the salesperson to find the best vibrator for me. Did you know that the best way of checking whether the intensity of a vibrator is right for you, you should buzz the area between nose and mouth? It’s amazing what you learn in such places…

Fast forward for quite a while to a time where it became apparent that my new friend needed a change of batteries. I did what I usually do and tried opening the infernal battery compartment and not surprisingly, couldn’t. And that was the start of an extended thought process in which I considered every single person I knew for the role of potential Vibrator Battery Changer (VBC).

My mother. Are you kidding me? We have an excellent relationship, even make jokes about sex every now and again, but ask my MOTHER to be VBC?? No. Can’t.  Need therapy now. Lots of therapy. She probably does, too.

My sister. A definite candidate, but she lives in another city and doesn’t visit too often. When she does, it's for family events and her husband’s with her. "Excuse me, family and John, I need to borrow my sister for a private moment while we exchange batteries in my vibrator. That I have brought with me to this family lunch. In my purse." Nope. Doesn't work.

Attendants. Well, they are supposed to help me with tasks I can’t do myself, so theoretically they’d be good candidates. However, they are also notoriously incapable of keeping stuff to themselves and this? Would be really excellent gossip. I’m not prepared for the entire staff, female and male, knowing I have a vibrator and, based on the need to change batteries, that I have used it. Just. Not.

Friendly neighbour who occasionally helps me out with various practical tasks. Nope. Not going there. So not. Considered and eliminated within a nanosecond. Above and beyond good neighbourship.

Friends. Well. Hrm. Alright then. What kind of friend could you ask this? Someone close, someone with whom you’ve shared deep dark secrets, someone who is comfortable with the topic of sex, will keep it to themselves and after the deed is done, is capable of pretending it never happened. I had several candidates.

The perfect candidate was my best friend - we've shared decades of ups and downs. And after all, a really good girlfriend is someone who’ll hold your hair when you throw up after having had too many drinks because you saw your ex with his new girlfriend, right? (I think I’ve watch too much Sex and the City - this has never happened to me and not just because my hair is short enough to be out of the way on its own) However, she was a single mother with a full-time job and we didn't see each other much in person, so I had to move on. Somewhat belatedly, it was becoming clearly to me that I had to add another selection criteria: lives in town and visits regularly. At the time, most friends fitting this description were men.

Right, then.

Some people say men and women can be friends, that sex is always in the way and I don't agree. However, asking your heterosexual male friend to change the battery in your vibrator would definitely put sex right in there, leading right to potentially awkward moments. Male friend w/partner? Thankfully, a lot of women get that men and women can be friends and adopt their partners’ female friends as their own. Still, this could be crossing the line (really? You think??). Gay male friend? Not a bad option, as long as you could get over that thing about asking a friend to do this. Which, as you may have gathered by now, was well nigh impossible for me.

It took a while, but in the end, I did ask a friend. Who to this day blessedly pretends it never happened.
   

Monday, January 02, 2012

Resolved

   
It's commonplace to make promises to yourself around this time of year and normally, my primary promises to not get caught up in the resolution obsession. Too often, it leads to a severe case of self-loathing as you take stock of your life and find it wanting, making promises to yourself that you don't keep. When you look at a brand-new sparkling year, thoughts of change should be about something more than limiting your intake of chocolate chip cookies, shouldn't it? It should be something that, to borrow a phrase from myself, honours your life and the people you love.

To that end, I've had some thoughts…

Last week wasn't bad. I was counting down the minutes to having 10 glorious days off and trying to get every item on my to-do list done. For once, I had been reasonably realistic, meaning there were only about 20% more items than I could feasibly do and, more importantly, I was aware of this fact. Still, I was tired - the holiday season kicks butt. On Wednesday, I went to see my doctor to get my B12 shot, something we've increased to twice a month. At some point Thursday afternoon, I realized I was simultaneously writing two posts and answering questions on HealthCentral, that one of the posts was pretty funny and that whenever I wasn't actively dictating to Dragon, I was humming. While taking a break for lunch, I realized that my brain felt nimble and fast. I felt like one of those circus plate spinners having several plates going, but not in that way where you're expecting everything to crash down around you any minute. No, this felt as if I was in complete and supreme control of every single plate, knowing exactly when to set them spinning again so they worked together in a synchronized, balanced whole. I felt like Superwoman. And it was because of that B12 shot. It is a wee miracle in a syringe, a raspberry-coloured shot of pure energy that gives me back my brain and enables me to dance on the highwire. 

Resolution #1: continue with bi-weekly B12 shots.

The next day, I woke up exhausted and with a pea soup fog in my head so dense that it took most of the day to get even halfway back to normal. 

Resolution #2: just because I have a lot of energy, doesn't mean I should spend all of it in one go.

And in a perfect segue… Someone said that doing the same thing over and over again and expecting different results is the definition of insanity. Some people attribute this wise observation to Freud, others to Einstein (my vote is on the latter), but regardless of who said it, those are words that can be applied to pretty much any situation. For instance, my inability to notice when I’m running low on energy and should sit still. A couple of times, it's led to me getting sick and I'd very much like to avoid that in the coming year. It's pretty clear by now that I will probably always work more than I should. Instead of continuing my attempts change who I am, it seems a better idea to focus on how I work. Leading to 

Resolution #3: work smarter, not harder. It might behoove me to remember I have a chronic illness and act accordingly in terms of managing my energy.

Exactly how to accomplish this is currently a bit vague, but will probably include the following:

Compartmentalize when I work on what. For instance, HealthCentral is my weekday job, weekends are for my own various projects.
Don’t work past 9pm
Be proactive, not reactive
Acquaint myself with saying No

I’m open to suggestions – how do you work smarter?

When I look back on 2011 I’m mostly happy with the year. A lot of exciting things happened, but there was also the mysterious and repeated disappearance of time. Weeks would fly by and I've come up for air, look around and wonder what happened to a month, sometimes two. Something important but lost in the shuffle: spending time with friends. When you start every e-mail to your friends with "I'm sorry it's taken so long for me to reply…" it’s a sign that you've lost sight of the essential. Work might be exciting, absorbing and time-consuming, but it is no substitute for people. 

Resolution #4: make time for friends and family.

What are your resolutions?