Working HARD!!!!

Hello Everyone,

The Pain Diaries is set to make it's world debut in Calgary May 13, 2010 (during the Canadian Pain Society's conference). To make that happen I have to raise $100,000.00 over the next six months or so.

Well, I can't do it all, though I've tried. So we are temporarily moving this blog over to our Facebook Group (The Pain Diaries) in order for me to focus my efforts on producing the play over the next several months.

I think this blog is important, and would love to see it eventually taken over and run by patients, as an important tool for people with chronic pain to be able to reach a community of their peers, and I hope someone will be inspired to step in and take it over.

Until then, please join us on Facebook: The Pain Diaries. We will keep you updated on what is happening and keep some discussions going.

If you are able to help with running the blog, marketing or fundraising for this project, please contact me on Facebook.

Thank you so much for all you support, I look forward to meeting you all on Facebook and next May.

Deborah Nicholson

Mondays with Marlene

In my opinion ...

Have you ever asked your daughter to get you some rubbers? I did and the final result was quite satisfying, but getting to that point was positively hilarious. First of all she wanted me to repeat my request, which I did. Then she suggested I was probably old enough to buy my own rubbers. I agreed. Then she said she was delighted that I wasn’t too old for safe sex. I said I was delighted as well, but it didn’t have anything to do with safe sex; it was all about exercise. “Ya, ya, ya, everyone knows sex is great exercise so don’t try that one mom.”

It’s funny how some things never change. She didn’t listen to me when she was a teenager either.

After being in a brace for almost seven months, I was sadly out of shape, housebound, lacking confidence and needed to do something about it. My body was crying for help and I was up to throwing out the old lifeline, but needed some rubbers to assist me. Of course since then I have found out they aren’t called rubbers; they are officially known as Theraband, which does sound much better, especially if your daughter is involved.

So now I am the proud owner of an excellent variety of rubbers – er Theraband - to assist me into getting fit again. I found my tolerance levels, got advice from my healthcare professionals and have slowly started to increase my activity. I’m walking most morning, have now started acquacise, am trying to use my exercise ball on a regular basis and have found the Theraband some of the most useful tools I have in my little “get back into moving" arsenal.

There are still things I can’t do, and that may never change, but I’m focussing on the positive, doing what I can and am already feeling much stronger and more sure of myself.

Another great side effect? Meeting new people, getting out of the house on a regular basis and feeling so much better about myself. Important stuff.

And the sex? Well I’ll save that for another column.

Mondays With Marlene

In my opinion....

When I was in grade school, I was madly in love with the boy next door whose name was Bill, but the bills I’m dealing with these days are not the least bit loveable. People-type Bills come in all sizes, shapes and personalities, but the paper bills I am now involved with are all big. Very big. In fact so big that they are painful.

Been there done that? I’ll bet you have. Appointments with doctors, physiotherapists, psychologists, and heaven knows who else, and the bills keep coming. Whether the pain you are dealing with was the result of a car accident, a fall, or is part of that big black hole of undetermined, I can guarantee you have not only had to deal with the pain, but with the painful business of paying bills. There is no question that those of us lucky enough to live in Canada have a pretty good medical system, but it’s not perfect, doesn’t pay for everything and can drop us into an endless round of bills that we often don’t have enough money to pay, or have to pay in instalments – sometimes for the rest of our lives. Granted, we do have the option of purchasing supplemental insurance to cover a portion of what the provincial medical system doesn’t take care of, but not everyone can afford it. It’s even more critical these days when so many people are losing their jobs due to the economic downturn. I tell you, this can be a combination of the perfect storm and the ultimate catch 22.

So what do you do when you’re in pain and trying to recover from the “sticker shock” cost of being ill? I wish I had some simple answers, but I don’t. I have protested one bill I received from a U.S. hospital, so we’ll see where that goes. If you have any ideas to share with us, please feel free to leave a comment. Perhaps if we get a dialogue going, we can all get some insight into how to deal with that bill thing and be able to put more of our energy into getting our lives back.

Mondays with Marlene

In my opinion....


Probably one of the worst things about chronic pain is feeling alone, imagining no one can possibly understand and trying to figure out how to lessen the pain or live with it....live being the operative word. Who can you really talk to besides your doctor? Who can really understand the mess this pain has made of your life? How about seeking out others like you who suffer from chronic pain? I don’t mean a stitch and bitch session; I mean exchange ideas, ask each other questions, give each other hope and know, finally, that you’re not alone.

A long time ago I had a “nervous breakdown”, a different kind of pain but pain never the less, and I’ve never felt so alone in my life. I felt ashamed that I hadn’t been strong enough to work through the stress and just carry on. Thank heavens I had a doctor who was not only compassionate, but smart enough to not just put me on “the pill” and tell me things would get better sooner or later. She sent me to the hospital as a day patient where I met many other people who were going through the same thing I was. I wasn’t alone after all and I also realized that I had absolutely nothing to be ashamed of. My job was to get well and not let the “stigma” of a nervous breakdown break me down.

Although my relationship with pain wasn’t a long one, I would bet the family farm that everyone suffering from chronic pain feels very alone and a little ashamed at not being able to handle it. I think the key to starting a new life is to gather all the information you can about your “problem” then act on it. Communicate, question, search and if, after all, you do have to live with pain for the rest of your life gather all the tools that you will help you, in the end, have a life. Sign up for group discussions, family sessions and know that you are not alone and have nothing to be ashamed of. Live.

Welcome to our new Master of Ceremonies

Welcome to Marlene Robertson, our new Master of Ceremonies around here. She has graciously volunteered to keep this blog running regularly, to free me up to write the play, edit the play, fundraise for the play and eventually stage the play. So you can now watch for regular updates - two to three times a week.

We appreciate all your comments, so please keep them coming.

Here's Marlene's first message.

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“You’re such a pain in the neck; Harry is a total pain in the butt.” How many times have we all made these statements and probably many more variations? These are relatively painless pains, and quickly pass. Nothing life-threatening here. But what happens when the pain doesn’t go away? What happens when we live with pain every day, sometimes for weeks, months or years? What happens if the pain never goes away? Well I suspect some of the people we have called a pain in the neck or a pain in the butt live with pain every single day of their lives, but we can’t conceive of that so we think they should just get on with life or suck it up or just grit their teeth and quit complaining. Ah, if only it was that easy. Wouldn’t life be grand?

I’m Deborah’s mom, Marlene, and I'm going to take over as "blog master" here, as the Pain Diaries becomes a reality. Over the years I’ve had some pain: a broken wrist, surgery, root canal and many years of migraine headaches, but until I was in a very bad car accident, I truly had no idea what pain was all about. Lots of bumps and bruises and stitches and six broken vertebra in my neck and back. Paralyzing, numbing, never-ending scary pain. But I am among the blessed because almost eight months after the accident, all six vertebrae have now healed, the pain is pretty much gone and my neck is slowly starting to work again.


What would I have done if I had to live with that pain every day for the rest of my life? Could I have sucked it up, got on with my life or grit my teeth? I don’t know and thank God and my Angels I don’t have to find out, but it made me understand that pain can be overwhelming and can literally cripple you. No more skiing, long walks on a perfect summer evening, or taking your kids camping. No more driving the car, making love with a man you adore, a man who has stuck with you through thick and through thin, a man who is suffering as well. Life will never be the same, and as I was so fond of saying throughout my recovery, “I just want my life back.” I have so very much to be thankful for and never again will I judge anyone who is in pain. Never.

Long Time No See

So, there is something I've figured out as I've been working really hard to lose weight. Life keeps getting in the way. You can use it as an excuse and never accomplish your goals, or you can plow through the hard times and come out the other end. I'm trying really hard to plow through. Really. And I feel sort of successful, after all, I have almost three quarters of the play finished. And that is GREAT! And I'm really happy with the content overall, though it will require rigorous editing - but then what writing project doesn't!

And do you know what else I've discovered? You can't do it all alone!

So here's what happened since last we've talked - I've got two books out at two different publishers and am getting positive feedback, but still waiting for that magic word "contract" and have been doing some editing on those.

I've had a great opportunity arise to work on a children's story that is probably going to turn into a young people's symphony concert.

I've written three quarters of the Pain Diaries.

I've been overcome by another great idea that came to me as I drove the coast of Oregon two summers ago.

Plus I've worked a full time job and managed full time family issues.

Did you hear the one about my mother who was trying to move back to Canada from Mexico with her husband? They got stopped for about two months in California with some heart problems. Then, they got medical clearance to travel and three hours on the road they had a blow out which led to a devastating car accident. They had to be cut out of their car, mom was unconscious and it turns out she has about six fractures in her neck and is now trussed up for the next three months or so. I have to say, stuff like this really distracts me from writing - with the emotional toll it takes.

On top of that, I try really hard to maintain some balance and have a bit of a life. I'm still hoping to find lots of travel and friends and fun before I go, and maybe even love...

So I can't do it alone. I can't write a play, manage the project, raise the funds, run the workshops and man the blog. So I'm asking for help.

I'd like to find someone (or many someones) to help with the blog. We really want this to become in interactive forum for pain patients and caregivers, but we need a blog-master/mistress. I can't run this and maintain everything else...as I've already proven.

I would love to put together a fund-raising committee. We need to raise about $20,000 to run a successful workshop performance to polish the play. We probably need another $100,000 after that to stage a big opening gala and week or so run of the show. The great thing is that this would potentially raise about $200,000 in donations, which would go into pain programs/research. And the Calgary Health Trust will write tax deductible receipts for us for the project.

And if I can't get a team, then I'll still get it done, but a little slower and one task at a time.

So if you're out there and you think this is something you could help with, send a comment, which will magically arrive in me email box and let me know.

Otherwise, thank you all for being patient and don't give up - I haven't!

Deb

Wow - a week of rest. How cool is that. I've been doing research for the play, interviewing two, three sometimes four people a week. It's exhausting...for many reasons. First of all, trying to fit this in around full time jobs is always challenging, just ask any of us on the Advisory Committee for this project...or for that matter, just ask any artist in Canada. Most of us work day jobs.

So what do we all do during the day? I'm glad you asked.

Dr. John Clark is an renowned and respected expert in the field of treating pain. He is the Medical Director for the Calgary Health Region Chronic Pain Centre. On weekends he is usually off somewhere presenting papers, giving talks, teaching...and sometimes I think he fits in a ski weekend.

Dr. Chris Spanswick, also a well respected expert in the field of pain management, who wrote the textbook "Pain". He is also the Medical Lead for the Calgary Health Region Regional Pain Program and an avid hockey fan.

Dr. Paul Taezner is a clinical psychologist and founder of the Chronic Pain Centre Pilot Project (with Dr. Pam Barton). He is also in demand and often off presenting or teaching somewhere in the world, while juggling his duties with the Calgary Health Region, the Chronic Pain Centre and seeing patients.

Terry Kane, though retired from traveling with the Calgary Flames, is still a busy man. He is a physiotherapist at the Calgary Health Region Chronic Pain Centre and also maintains a private practice. He also presents and lectures, as well as spending time with his family.

Hal Kerbes normally would be in Calgary running his company Shadow Productions, writing and probably acting as well. But this summer he is in Chemainus, BC, at the theatre festival. You can see him starring in two different plays if you're out there. Plus he's still juggling the writing and trying to do some research for the play as well. You have to admire someone who can learn two plays at once and actually say the right lines on the right night!

And me, I'm at the Calgary Health Region Chronic Pain Centre during the daytime, faithfully transcribing medical reports. At night, I turn into a writer. I am currently working on editing my sixth murder mystery (Kate Carpenter Mysteries), selling a medical thriller (Mind Games), finishing a novel about a mother and her two daughters (Finding Evangeline) and writing a play that has affected my life deeply.

So there, that's the first reason it's exhausting. And the second is the emotional impact. I find it interesting that I thought as I researched this I would be able to distance myself from the emotions. But I underestimated the power of the stories that I am hearing.

And I forgot that us writers are kind of crazy people too. These characters float around in our heads and sometimes they become very real (to us) and you begin to feel the emotions as if they were your own. I have been known to drive down the Deerfoot in tears, sobbing because I've just written a scene in my head where my characters from my murder myster series have had a huge fight. I've laughed out loud in very inappropriate places when I've come up with a funny scene. Now you know why some of those really famous writer's drank so much...coping with all these extra emotions from all these imaginary characters!

But seriously, again I want to thank everyone who has shared their stories with me so far, and I look very forward to hearing more as the summer moves on!

Counting Blessings

It's my birthday. Yep, the same week as Shakespeare and Carol Burnett and Barbra Streisand. It's a lot to live up to. And I'm now closer to 50 than 40, but I managed to get this far relatively unscathed. I've got four scars from surgery, nothing life threatening and no organs gone I can't live happily without. My bones are strong but I need bifocals. My skin is acting like it did when I was sixteen again - not a good thing. My knees creak and it's costs me an average of $40.00 a month to remain a natural blond.

But there is nothing wrong with me that a little primrose oil or Advil won't fix. And now that I have started doing research interviews for the play, I am incredibly thankful for that. I could have woken up from any of my surgeries with permanent pain, many have. My mom has migraines, I could have inherited that, most do. My knees creak but they still hold me up and take me through life one step at a time, and I can flex my neck and look up into the sky to make a wish on the first star of the night. Not everyone can still do that.

So I am thankful for everything I have. And I am amazed at the courage that people with chronic pain conditions show us. They have pain all the time, but they get up every morning, they face the day and they, too, put one foot in front of the other. And I'm sure they do it with less complaining than I do, most mornings.

I remember reading The Shell Seekers, and one of the children asked their mother how she was. She replied that she was breathing when she woke up that morning, so it was a good day. It's hard to be grateful for the little things, but I think we should all try hard to do so and let the people who are struggling with pain know how much we admire their courage.

And that we believe them.

Some interesting facts about pain

Here are some really interesting facts about pain provided by Dr. John Clark of the Calgary Health Region Chronic Pain Centre.

Pain is one of Canada’s most serious health problems. Pain impacts emotional, physical and psycho-social well being of individuals/ families; our health care system and our economy.
People with severe chronic pain are 4 times more likely to be hospitalized, are 6 times more likely to suffer from clinical depression, and require 4 times the number of medical consultations than people without pain. Inadequately controlled pain is a patient safety issue associated with delayed healing; and increases in length of stay, disability and suffering (CCHSA, 2003). Statistics Canada (2005) estimates a cost of $10,000 to $14,000 per year per patient to treat chronic pain and $12.5 billion in lost productivity.

Despite known best practices that adequately address pain, pain remains under-treated in three out of four patients (Brookoff, D.,2001; Chapman, 2004). Approximately, 26% of adult Calgarians (200,000) experience chronic pain, of which 3% (30,000) suffer severe disabling pain (CPHS, 2001). Due to the aging population, the number of people in Calgary and Alberta with moderate or severe chronic pain is projected to increase by approximately 20% over the next 10 years.

The Canadian Pain Society Waitlist Task Force recently concluded that there is deterioration in health related quality of life and psychological well if patients wait for 6 months or more for treatment of chronic pain and that measures should be taken to ensure that wait times for chronic pain treatment should be no longer than 6 months.

In the beginning

There was an idea. There is always an idea. The problem is whether one can germinate the seed into something...be it a novel, a short story, a play, a TV show... The other problem is getting other people to believe in the idea.

Well, I had the idea to write a play about chronic pain. It's something that's not understood and literally thousands of people suffer in silence. They suffer while those around them think it's all in their heads or that they're malingering. They lose their lives figurately, by not being able to work, to care for themselves, to play with their children or have relationships with their husbands and wives; and they lose their lives literally, when they think they can no longer cope.

And finding supporters was much easier than I thought it would be. There are hundreds of caring professionals out there that dedicate their lives to helping people with pain. But there are also hundreds of people that have been touched by pain themselves or know someone who has been touched by pain. I mean, think about it. Pain is universal. No matter where you go on this planet, everyone feels pain.

This blog is dedicated to the sufferers and their friends and families, and the people who try and help them. It will track the making of the play. All of us who are involved, and there are so many, will comment, and hopefully some patients may add their comments as well. If we can touch the life of just one person, we will have reached our goal.

Deb