Wednesday, February 27, 2013

Blog Tour Kick-Off!

I'm happy to announce that my blog tour kicked off today! What's a blog tour, you ask? It's a book tour where you don't have to put on makeup or even leave your home!

My lovely friend Cathy at The Life and Adventures of Cateepoo agreed to host the first stop on the tour and to hold my hand through the jitters. She asked some fantastic questions about RA meds, alternative treatments and sex. We also included a giveaway of two copies of the book. Hop on over to Cathy's blog to read the review and Q&A and enter in the giveaway,
   
 

Monday, February 25, 2013

Hope



Hope. It's a very big part of Your Life with Rheumatoid Arthritis. It's something I mentioned specifically in many of the chapters in the first book, Tools for Managing Treatment, Side Effects and Pain. More than that, though, finding a way to connect to hope is the driving force behind the series.

The dictionary defines hope as "the feeling that what is wanted can be had or that events will turn out for the best." Over my decades of living with RA, through good times and bad times — and really bad times — a belief has quietly and steadily grown within me. It is the belief that hope is central to living with this disease.

When you spend every day with this cantankerous companion called RA, it can be difficult not to get pulled down into the darkness. Sometimes, it's pain that drags you down, other times it is being overwhelmed by medication and medical issues. During the good times, the spectre of a flare can hang over your head like the other shoe, waiting to drop. At first, it can feel as if there are no choices, as if you have been tossed into a roiling ocean and have forgotten everything you ever knew about swimming. So what do you do? Do you drown or do you swim?

And then you talk to someone who's lived with it a little longer. Or you have a good doctor who promises you that they'll fight for you. Or you have a good day where all the crap recedes just enough so you can brief or think. That's when you start seeing the possibility of a choice. The choice to hope. The choice to have faith that the meds will work or even if they don't, you'll find a way to manage.

It is a start of a belief in yourself. A belief that you are strong enough to get through this. A belief that with your own resilience and the support of your loved ones and your friends with RA, you will be able to take one step after the other and get through this. It is a belief that medical research will find a drug that works for you. A belief that other aspects of your life will help you cope with the crap. And the belief that you are more than RA.

All of this is hope. It is what gets you started down the path of understanding your disease, your options for treatment and what can help you manage the symptoms of RA. Hope is what keeps you going, not giving up until you have found something that works. Hope is the foundation for your quest to live a good life with RA. And believing that it is possible to live well with RA is the start of it all.


The wonderful painting I used at the top of this post was gifted to me after a very rough time by my friend, the wonderful artist Michelle Ottey. It hangs on my yellow kitchen wall, making me smile every day. 

Crossposted on Your Life with RA

Friday, February 22, 2013

Reinventing Yourself with RA

This week on HealthCentral, I riff on how Ra can prompt your to seek renewal and reinventing yourself:

"RA can be a gift.

When I say that, people usually look at me as if I've grown another head. How can this chronic autoimmune disease that frequently and randomly takes over your life be a positive thing? Sure, it isn't always all rainbows and unicorns — sometimes it's like being perpetually rained on and speared by that unicorn's horn. But RA doesn't just take, it also gives. And one of its gifts is the opportunity to reinvent yourself.

The moment you receive a diagnosis of RA, you are no longer the person you were. Now you go through life with a chronic illness that requires medication, coddling and juggling a host of challenges. Sometimes, these challenges sideline you for a while and sometimes, they mean changing your life completely. Living with RA forces you to reevaluate your life, both physically and emotionally and that can be a good thing."

You can read the rest here.
  

Thursday, February 21, 2013

Family Day Tinks

In between this past weekend's madness of getting The Book ready to launch, we had a wonderful respite in the form of a Tink visit. There's nothing like two 7-year-olds to blow stress and lists out of your mind and just focus on the present.

We went for lunch at a local pub.While waiting for the food, the kids mauled Janne


Morgan and I shared some confidential information

Photo by Janne/Tink/Mama

Liam showed off a Blob Fish 


While Janne and Morgan looked on



Eventually, the kids' got tired of waiting for the food and started gnawing on each other


After lunch, we went back to my mother's place and the kids mauled The Boy. Here Morgan's trying to hear if the wind from the small fan moves through David's head from one ear to the other




Practising for the trapeze



 

And Liam investigates the fan in more detail


  

Tuesday, February 19, 2013

Meet the Book



Three years ago, I finally went public with a dream. In so doing, I trusted the meds enough, trusted fate, the universe and/or various divinities enough that I could start making a long-term plan. The dream was to have a book with my name on it.

And today, I do.


After a gestation period longer than an elephant’s, my baby is finally ready to see the day. To meet you. To meet the world and see what the world says. That part is a bit nerve-racking. 

Well, to be honest, all of it is more than a bit nerve-racking. There’s a really big difference between sitting quietly at my desk dictating words into a document and then putting it all together and offering it up for sale on Amazon

Nonetheless, that’s what I’ve done. It also has a beautiful new website

Three years ago, the idea started out as a book about how to live well with rheumatoid arthritis. Because having RA is about so much more than a physical disease. As is the case with so many other chronic illnesses, when you have RA, your whole life has RA. It affects your social life, your work life, how you open ziploc bags and jars, touches your relationships, how you comb your hair and then there’s that pain you often have to deal with, too. Living well with RA is something you learn over time. It’s hard work, there are mistakes and wrong turns and really difficult situations along the way, but after 10 years or so, you get better at it.  

And it seems entirely unreasonable that every person with RA has to go through that process on their own.

And then I thought, wouldn’t it be great if you had a friend who could show you some shortcuts? What if there was a book that talked about all the things involved in your life with RA and helped make them easier? What if there was a sort of guide book to living well with this disease? And what if it wasn’t just for those who are new to RA, but also a resource for people who have lived with it for years?

Three years later, the book has become a series of three books called Your Life with Rheumatoid Arthritis. This series is created to help you become empowered, to get to a point where your life is first and the RA mutters in the background. To manage this juggling act that is living with a chronic illness so you can reclaim your life and go out there and live it.

The first, Tools for Managing Treatment, Side Effects and Pain, is about the basics that so many of us deal with off and (mostly) on throughout our “career” with RA. If your life with RA were a house, these are the foundation. The physical crap — and yes, that really ought to be a medical term — usually plays a large role in what sidelines us and makes life hard. Figuring out a way to manage your physical symptoms, be they related to RA, medication side effects or the pain that so often is part of the disease, will make the journey easier. The first book will guide you through your journey of managing the physical crap in a way that works for you.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available for Kindle on Amazon. Other formats will be forthcoming down the road. If you don’t have a Kindle, you can download the Kindle app for SmartPhones, tablets, and computers here.

And now, if you’ll excuse me, I have to go write Book 2.

Crossposted on the Your Life with RA blog.

Tuesday, February 12, 2013

Anger Has a Place, But So Does Joy



A while back, Laurie suggested that I watch Pink Ribbons, Inc. and it's been on my list of movies to buy. It turns out that sometimes, when you lollygag long enough, really good things happen. Last week, she posted this news: The National Film Board of Canada is currently offering the movie as a free download. All you have to do is answer a short survey before the download and after watching the movie. So naturally, I signed up. And it is an amazing movie. One that will open your mind, make you think and quite likely change how you act.

After watching it, I called to tell my mother about it, hoping to encourage her to watch it herself. I was so revved up that I went on at some length and subsequently, she may not have to watch it after all. A-hem. She asked me if I felt sick inside, because that's so often the reaction to documentaries, isn't it? I told her that I didn't, because Pink Ribbons, Inc. manages to do that rare thing of making you angry and at the same time, not only giving you something to do with that anger, but also weaving in optimism. Go get it. You won't regret it. PS: be patient - it might take a day or two to get the download link after you answer the first survey. And a tip - download in the late evening or you may not be able to access it.

During one of the interviews, a woman (who I think is named Barbara Brenner) mentioned how people tend to say "anger isn't helpful." And it made me think. Because I've heard that message, too, as a person with RA, but even more so as a person with a disability. People aren't comfortable with the sick or disabled being angry. It goes against the stereotype of quiet and brave suffering and the requirement to be a good little cripple. Because people who are angry tend to demand things and that might mean you have to change the way you provide services like health care or have to spend money to make your workplace accessible. So anger isn't seen as helpful, but as Ms. Brenner says in Pink Ribbons, Inc., "it depends what you do with it."

Anger doesn't necessarily mean negativity. Anger can be the fuel that gets you out there and fight for change. Anger about unfairness and injustice is what connects you to other people and together, you make the world more tolerant, more accessible and more inclusive. As Ms. Brenner also mentioned, movements such as Women's Lib or the civil rights movement, have managed to use anger constructively and still include optimism and joy. And that's the key right there, isn't it? To make sure that you don't get stock in a one-dimensional state of being. To focus on using those feelings — be they anger or joy — in a constructive way. Anger on its own doesn't accomplish anything. Anger not channeled into effective and constructive working for change just makes your life dark and negative. And anger unbalanced by joy makes your whole life unbalanced.

Which leads me to this little thing I've started doing. About a month ago, Cathy posted this image on Facebook.


I promptly shared it, but instead of moving on and forgetting about it — as is the case with so many things on Facebook — this one kept rattling in my head. When your life is filled with challenges and your health is not the best, the dark can take over. Finding a way to deliberately focus on joy, even for just a moment, can mean the difference between drowning and not. So every day, I post #todaysjoy on my Facebook page, sharing something that gave me a moment of joy. I'm taking it to Twitter, too, just as soon as I get enough energy back to tweet regularly.

Will you join me?
  

Thursday, February 07, 2013

A Learning Experience



Last Monday, the stairwell next my apartment got painted. I have massive problems with paint fumes — it triggers my asthma in about two nanoseconds. I have an arrangement with my landlord that involves advance notice (so I can plan to be elsewhere), taping up the door to painted areas, etc., but through a farcical chain of events, the painting was a surprise to all. Compounding the issue is the fact that the fresh air exchange in the public hallways of my building is currently not working. Thanks to this, I learned something.

Paint fumes make me stupid.

Not like fibro or RA fuzzy brain. Paint-induced stupidity is far more profound, which was a surprise to me as I thought fibro/RA fog was about as uncooperative as my brain could get. I had no idea. I spent last week in some sort of strange fugue state, where I couldn't focus, my concentration was nonexistent, I was vaguely aphasic both in speech and writing, everything was blurry and it felt like my eyes were moving independently of each other like a chameleon’s. With my regular pain-related fogginess, I can sense the working parts of my brain, sort of like shadows buried in the fog — you can see the structure, you just can't quite access it. Last week was different. Last week, there was a white mist with dark blobs moving randomly around in it, not connecting to each other. I did a fair bit of whining about it and its consequences, namely that I hardly got any work done. And that’s the second thing I learned.

You can’t write effectively when your mind is a fog.

During regular foggy times, it can take me two days to do a post. It’s hard going, feels like molasses in January, but I can get there. This time, it was nigh on impossible to string a sentence together. I tried. Lord knows I tried. Every day, I sat at my computer trying to do things and every day passed with hardly anything being done and what did get done, wasn't done very well at all. The days did pass quite quickly in an odd way and by the evenings when I looked back to try to pinpoint what had happened, I couldn't. A friend of mine who knows about such things as paint fumes and impact of same said that in those susceptible to being affected, the fumes can affect "mental clarity." Yup. That's putting it mildly.

Part of the frustration was that it was also nigh on impossible to air out the fumes. What with the lack of fresh air exchange, plus the depth of winter having settled in and showing no signs of abating, it came down to a choice between fumes or frostbite (when the windows weren’t frozen shut, that is). I thought of leaving during the day, but the minus plenty outside was a severe deterrent. Besides, I kept blindly going back to sit in front of the computer, because that's what I do. I work during the day (and evening) and the habit’s apparently so ingrained by now that I’d do it in my sleep. Still, nothing got done. A couple of days ago, I looked at The List and realized I had done maybe a third of what was on it for last week. And shortly on the heels of that, I realized something else.

The world didn’t end.

And sure, I’ve been in place before where not all the list got done and everything was fine, but nothing this profound. And sure, I seem to be in a bit of a lull project-wise, but still…  The world didn’t end. In fact, the world’s ticking along nicely. It turns out that I am not indispensable and surprisingly, this realization was a huge relief to me. Despite having spent a week feeling like crap, when I came out on the other side, I actually had less pain and felt much saner.

Which just proves the point that believing you’re indispensable is the first sign of an impending nervous breakdown.

I got my brain mostly back this week, but haven’t kicked into Energizer Bunny mode yet. Because I realized another thing. I’m tired. Bone-deep tired. So I’m taking it easy, doing what I can, but not as much as I can and it’s been pretty wonderful.

I’m not saying they should paint more often, but I did learn something from it.
   

Wednesday, February 06, 2013

Pain, Touch and RA

This month on HealthCentral, we're writing about relationships. My contribution is a post on the importance of touch and what you can do to meet your need for physical contact when you hurt (yes, that includes sex):

"Touch. We know it's important to babies and children, but once we are grown, we pay less attention to it. Nonetheless, it's still important to our daily lives and mental health. The skin is our largest sense organ and touch has evolved as a medium of communication for humans. Your skin tells you if it's hot or cold, humid or dry. Your skin is involved in greeting strangers with a handshake, interacting with your family and connecting to your spouse or partner.

And then RA comes along and touching falls by the wayside. You hurt and are afraid that that physical intimacy — hugs, touch, sex — will hurt and the people who love you are afraid that their touch will make things worse for you. Before you know it, this essential way to nourish your relationships becomes a smaller and smaller part of your life. It leaves you increasingly isolated and creates distance between you and your loved ones at a time when you need the connection the most.

When you have RA, touch can remind you that your nerve endings are not just made to register pain. Touch can heal and make you feel loved and not so alone. But how do you get back to touching when you hurt?"

You can read the rest here.
  

Tuesday, February 05, 2013

Rather Outspoken



The news matters.

This is the central tenet that runs throughout Dan Rather's Rather Outspoken: My Life in the News. Woven through stories of 60 years working in the news, Rather has written a passionate argument for keeping the news independent and unbiased. And then he tells you why this is an important topic, but does so in such an interesting and entertaining way that you don't notice you're learning something crucial.

The book starts with his version of the events that led to him leaving CBS news. Namely, the reporting about Abu Ghraib and his report about George W. Bush's time serving — or, more to the point, not serving — in the Air National Guard. These are the stories that put corporate interests right up against reporting the truth and the truth lost. Rather offers up his side of the story and even if you subtract some of it to account for personal bias, it's a doozy. If you assume that just half of it is true — allowing for an exaggerated amount of personal bias — you'll come away completely disillusioned about news today.

After these first two chapters, Rather takes you back to his childhood, listening to Edward R Murrow on the radio and dreaming of becoming a newsman just like him. He started small in public school and took it from there, eventually ending up at CBS news in New York. Listening to Rather read the story of his life on the audio book is like a living and very interesting history lesson. Two chapters are devoted to "Presidents I Knew" and take you on a personal tour, much of it behind the scenes, from Eisenhower to Obama. This alone is worth the price of the book. Can you imagine spanning 50 years of covering the top dog in the US? It gives Rather a unique viewpoint on power and government that's very educational.

The book also covers a number of different stories plucked from his decades in the news. His time in Vietnam, what happened during Watergate, 9/11 and his career after CBS. I was especially fascinated with… well, all of it, but particularly his detailing of the investigative reporting that went into covering the Bush story and the extents to which Republicans went to discredit him. However, it is not just a story of an abuse of power, but also the story of how the corporatization and politicization of the news removes the integrity of the press. CBS, previously a very independent organization, is now owned by Viacom, a huge conglomerate that owns a wide variety of businesses and whose corporate interests sometimes need protecting from the truth. Rather takes you through a damning indictment of what has happened to the state of the news and how it has changed over the time of his career.

Rather sees news as a public service, one that was developed to serve a watchdog role as part of the checks and balances against corruption and abuse of power. There's this wonderful quote in the book: "news is what people don't want you to know. The rest is publicity." He goes on to quote Chris Hedges, saying that "a democracy survives when its citizens have access to trustworthy and impartial information" in the form of reliable and unbiased reporting. These days, six or fewer giant corporations control 80% or more of the national distribution of news in the US. Due to the corporate interests of these large organizations having a say in what gets reported and what doesn't, we're in a situation of having censorship masquerading as good business. That pretty much makes trustworthy and impartial information a thing of the past. News has become a ratings getter and a profit generator, something which trivializes this very important part of keeping the powerful honest.

I could go on (and on and on). Instead, I recommend you read the book yourself and if possible, get the audio version. Give yourself the treat of listening to Rather narrate the story of his life in the news. Not only is it entertaining and interesting, but it will also make you look at the news with the skepticism it deserves. Because the news matters.