Thursday, November 29, 2012

Foggy Morning

Last week I had an early morning appointment and got up at an entirely unreasonable time. It'd been a foggy night and by the time I got out of the shower, it was still early enough that the sun didn't have enough power to burn off the fog yet. Not surprising that close to it getting up. I don't have that much power immediately upon rising, either. 

And it was beautiful. I didn't have a lot of time to get ready, so I had to choose between putting on makeup and popping outside with my camera. Given the title of this post, you can probably guess what I chose.

I am so not a girl.

Herewith the best of the bunch:





   

Tuesday, November 27, 2012

Rediscovery



Seven or eight years ago, I stopped being able to read regular books. My neck and shoulders couldn't handle holding the book or the looking down part. Before that, and for as long as I can remember, I carried a book with me wherever I've gone. Reading was my first love. I didn't so much read as inhale books and it started when I was a child. Every month, my mother would take me to the library in the next town over and I’d fill two large bags with books. The librarians loved me because my lending habits worked so well for their stats they were able to get extra money in the budget. Before I stopped being able to read regular books, I'd devour 3-5 books a week and suspect it may have worked equally well for the libraries I've used as an adult.

I remember hours, even days of disappearing into a book. I remember finding every opportunity, even if it was just 5 minutes, to dive back into the adventure and then somehow persuading myself to read just for another 2 minutes, maybe just to the end of this page or this section or the next chapter. I remember the years between the last time I was employed and my present work, getting a new book, something I'd looked forward to and spending three days doing nothing but read. I’d emerge out on the other side after a satisfying adventure, with a crick in my neck and being sore all over because I had sat still in one position, reading, for three days.

And then I couldn't. It was hard loss, being without this thing that kept me sane and whole and occupied since I was a child. For a year or two, I read only what I could find on the Internet and got used to shorter, actual pieces. In 2005, Ken came to the rescue (as he so often does), giving me a membership for Audible and I found fiction again. Since then, I have read hundreds of audiobooks and been very happy with this way of reconnecting with my first love.

It's a different way to read, though. When I read with my eyes, I read fast, flying over the words on the page (or monitor). When I read with my ears, I have to listen to every word as narrated by someone else. You catch more detail that way, but it’s not so easy to go back a paragraph or page to read something again. It also takes both more and less focus at the same time. More because there is no skimming over a sentence, speeding ahead while you gather the gist of what's going on, as opposed to listening to every word. Less, because someone else is reading to you and you can wash dishes while being entertained. I rarely read audio books for hours and hours, though. I thought it was because my days are pretty filled. I have only certain times where I'm able to read, such as when I'm eating dinner or the last hour of relaxing before bed while I putter and get ready.

And then Laurie’s book Not Done Yet: Living through BreastCancer was finally released in an e-book edition. I’ve had the regular book version since going to her Toronto book launch three years ago, but haven't been able to read it. Now that it's out on e-book, I grabbed it immediately. I started reading last Thursday. And then I read some more. And before I knew it, I was inhaling the book, flying through each chapter, finding just a few minutes to read just another chapter, then, talking myself into another 5 minutes and before I knew it, an hour and a half had gone by. It was like rediscovering a lost love, falling back into familiar arms that felt like home. I filled every available moment with Laurie's book and emerged on the other side sore all over, realizing that even if I read it on a monitor, audio books will have to be my primary source. They don't make my neck and shoulders hurt.

Not Done Yet is a wonderful book, filled with joy and fight and truth about what it's like to live with metastatic breast cancer. I had lent my book copy to one of my attendants who’s had breast cancer and she told me she wished she’d been able to read the book when she was sick. Now that I've been able to read the book myself, I can see why and I'm so honored that this brilliant woman is my friend.

Today, as our neighbours south of the borders have just come out of the Thanksgiving holiday, I am also thankful. For rediscovering reading with my eyes instead of my ears. And for my beautiful friend Laurie, without whom my life would be so much poorer. Reading the book about her journey through breast cancer feels extra poignant now. She’s having brain surgery today to deal with another tendril of the beast. I know the surgery will be a success - she has a fantastic surgeon who is very confident that all will go well. I know that she will pull through this new battle and continue being Laurie: beautiful, brilliant, funny. One of my favourite people in this world.

Still, if you have a moment, please send good thoughts her way. 

If you want to read NotDone Yet by Laurie Kingston or get a copy for a friend who has breast cancer, there are a few print copies left at Chapters and you can also contact Laurie directly. However, there are no limits on e-book edition. It's available at Chapter's for Kobo (Canada’s version of the Kindle or Nook. Also available as a desktop app). Amazon Kindle edition to follow at some point in the future.

Wednesday, November 21, 2012

In Which Writing is Like Living with RA

2 1/2 years. 67,000 words. 268 pages.

The Book is done. At approximately 12:37 PM, Saturday, November 17, 2012, I closed down the finalized manuscript. And then I said out loud to no one in particular - Lucy was ignoring me - "I am done."

Well, not entirely done, but it’s now in the hands of my copy editor for a final ripping apart. I'm kind of excited to see how well my instinctive approach to grammar stands up.

And it's weird. It is really, really weird to be done. For so long, it has been about finishing one chapter or one section and then picking up another, being done, but never Done. And now that I am, there is this odd, restless silence, both in my head, my heart and my apartment (I keep expecting confetti and marching bands, but so far it hasn't happened except through lovely digital pictures and cards with confetti from friends).

Wait… what’s that? Ah. There they are





That’s better.

Anyway, so there I was, flailing about for something to think about, plan and write and my brain started gnawing on the outline of the second book in the series approximately 10 minutes after I’d finished the first one. I very quickly got a grip on myself. An action which I’ve had to repeat at least twice a day since then.

Having made the decision to do nothing related to writing for a week or so, but not yet being out of the obsessive stage, I started thinking about this book and what creating it meant in a larger context. It's convinced me I can do anything I set my mind to. My parents told me that I could, but that's a theoretical thing that parents are supposed to tell you. Writing this book put it all within a practical context. It became a living example of the process of doing something hard, meeting a large goal or fulfilling a dream. And I think this process can be generalized almost anything else in life. To wit: 

Set a Goal 
Write a book. Get a degree. Lose weight. Rebuild your strength. Clear the dining room table. Pack up your house for moving. Change a habit. Heal yourself after a loss. Get through a really bad flare. 

Divide it into Smaller Goals 
Having a big goal to meet or dream to shoot for is a wonderful thing. It's also completely overwhelming and impossible to do unless you parse it into smaller goals. Something attainable. Many somethings attainable. Chapters. Courses. Pounds. 5 minutes of exercise every day. Clearing three pages of paper from the table every day (trust me, I’ve been there). One box at a time. Get through one day with a new habit or without an old one. Grieve, cry, reach out. Get through today, try a new medication, try to control the pain. 

Take the First Step 
Stop talking and start doing. Don't look at the final goal, don't think about how far it is until you get there, just look at today. It's only one step. You can do it. 

Take the Next Step, Celebrate 
You’ve take one step, you can take another. Do it. Be pleased with yourself. Don't think about each step in the context of the bigger goal, it will only make you minimize the importance of your accomplishment. Focus on the huge achievement that is you taking each step. Celebrate every time you take a step.Surround yourself with people who'll celebrate with you and cheer you on. I had a lot of them and am beyond grateful for their patience. They'll be thanked properly and publicly soon.

Keep Taking Steps 
Show up. Keep going. Even when you don't want to, even when you hate the thought, even when you want to curl up and cry at the thought of doing it again today. Drag yourself kicking and screaming to the computer, to the books, to the healthy food area in the grocery store, to the chaos that needs to go into a box. And because you have divided into smaller steps, it is easier to do, even on the days where you don't want to. Look at the steps you've already taken, not at all the steps that are still in front of you. Then take the step.

Taking the steps, showing up, doing your one thing becomes habit. Something you do automatically. Maybe something you complain about, but when others suggest you take a break, you look at them as if they grew another head. Because not doing it – whatever it is - makes you itch. Makes the day feels wrong. You may occasionally veer off the path, but you come back again. Because it has become habit and nothing feels quite right without that step.

And then I thought some more about this process. About taking the steps, getting back up again, about this creature of stubborn determination you become. And I realized that what I had described was life with a chronic illness. That living with RA, this cantankerous and obstreperous partner who so often seems to live for putting obstacles in your way, prepares you better than anything else for doing something hard and something big. You go through your life, year after year of negotiating obstacles, flaring, dealing with pain. Of taking two steps forward and three steps back, four steps forward and three steps back, repeating the pattern all over again, day after day. Sometimes, stubbornness and will are the only things that keep you going. Never giving up, holding on, putting your head down and keep going forward are skills that are honed when you live with a chronic illness. And they are skills that will enable you to do anything you set your mind to.

Don't ever let anyone tell you that you can't. RA has taught you how.
  



Monday, November 19, 2012

A Study in Santa

I almost didn't yesterday. There were things I had to do, documents to review, Lists to vanquish.

And then, at the last minute, I found myself running out the door without quite realizing I'd made the decision to scuttlw work. Because it's where I've been for 15 of the last 16 years on a special Sunday just around now. It's the start of my Christmas.

It's the Santa Claus Parade.

I knew I was getting closer when I found exhausted band detritus littering the streets


and the crowds made it official. I was in the right place. By the way - thanks to the Toronto Police for excellent crowd control that meant I - and other short people, like children) - could see the parade



There was even an errant elf


I missed most of the floats, but the bands were excellent. This one was especially stirring - there's something about flags waving in the wind with the sun streaming through them that lifts your heart.


I got up close and personal


Mrs. Claus' float signalled the almost-thereness of Santa and that's when the crowd lost all decorum, everyone streaming towards the front


It's amazing how many people will position themselves in front of a person in a wheelchair, just to make sure they (and their 6-month-old infant) will be able to see the man of the hour


So I used the cues of the crowd to determine how close he was. Yep. Getting closer.


And here is my Santa Study


This year Santa was wonderfully interactive (as opposed to last year's model), directing the crowd in singing Christmas songs




waving to everyone (I love how many adults are there without kids, the giddy looks on their faces and how everyone sang along with Santa)


and saying goodbye for another year



And then, as I headed for home, I saw what is my other favourite moment of the day. Two handsome guys headed home (and the guys on their backs were pretty good-looking, too)



Every year, this day makes me happy. Thanks for bringing Christmas, Santa Claus Parade!

 

Tuesday, November 13, 2012

FDA Approves Xeljanz (tofacitinib) to Treat Rheumatoid Arthritis

Really great news in RA treatment! I wrote about the new drug in more detail on HealthCentral:

"Last week, the FDA approved a new drug to treat moderate to severe RA. Pfizer's Xeljanz - brand-name tofacitinib - is the first in a new class of medications called Janus kinase (JAK) inhibitors. It is also the first new RA medication in more than a decade that is taken orally, not by injection or infusion. This is good news for everyone who lives with RA. There is now one more treatment options to explore, increasing the chance of going into remission.

What is Xeljanz?
Xeljanz (pronounces Zel’Jans’) approaches treatment of RA through a different pathway than the Biologics. There are many processes involved in creating inflammation within body. The Biologics inhibit pro-inflammatory cytokines from outside the cell, blocking receptors for various immune cells, such as T and B cells, interleukin and the tumor necrosis factor. The JAK pathway is another inflammatory process. JAK inhibitors are small molecule drugs that fight inflammation from inside the cell by inhibiting the JAK pathway."

The rest of the post is here.
  

Thursday, November 08, 2012

Fuzzy Brains: RA, Pain and Cognitive Issues

Earlier this week, I had a medication-related senior moment so profound that it was the driving force behind the idea to write today's HeakthCentral post. Write what you know, right?

"In 2004, I was in one of the worst flares of my life, the pain so intense and omnipresent it cast a shadow over everything. For the first time in a long time, I had problems focusing. Where I once was able to relate a conversation in detail, now I couldn't remember what someone said half an hour ago. Where I once could have a vigorous debate lasting an entire evening, now I couldn't follow someone's argument from point A to point B.

Cognitive problems are the dirty little secret of RA. Many of us have problems with short-term memory, logic and focus, but no one talks about it. Admitting that your brain is not sharp as it used to be is really scary."

You can read the rest of the post here.

Wednesday, November 07, 2012

Vote in the User's Choice Awards

The nominees in the User's Choice Awards have been chosen and voting is open until November 18, 2012. 

Help the Arthritis Foundation to develop a list of arthritis-friendly products and services - vote now!


Monday, November 05, 2012

2013 Calendar, Cards and Gifts

It's that time of year again: the Shop has been updated and new products added.

There's the new 2013 The Seated View calendar



Several holiday cards and note cards in different quantities










There are new prints. 




I call this one Still Standing. It may be creaky and rusty, but like so many of us, it refuses to fall over


 

My signature piece Mystic is still there (also available in canvas print)


 Gifts such as a mousepad with a view from Sugar Beach


A keepsake box with a curious swan

A mug especially for people with RA. What looks to be a funny saying on a blue and purple mug is really a quiet reminder of why you take the meds.



 And there's more - hop on over to The Seated View Shop to check it out!
  

Thursday, November 01, 2012

Emergency preparedness with a Chronic Illness

Sandy's made everyone re-think what they need to do in order to be ready for a potential emergency. Earlier this week, I wrote a post for HealthCentral about some of the extras you have to consider when a chronic illness is in the mix:

"As I write this, hurricane Sandy is gearing up to hit the Northeast part of the US and Canada and all those stories of a Frankenstorm are more than a bit unnerving. Every talking head on every channel is telling us how to prepare. There is video of boarded-up windows, long lines of cars headed out of coastal areas and empty store shelves, but not a lot of information about preparing for an emergency when you have a chronic illness or other type of medical condition.

Getting ready for a potential emergency such as hurricane Sandy involves planning ahead in several different areas of your life. Some of your plan will be the same as your healthy and able-bodied neighbors, but you will also need to make plans that specifically consider your RA."

The rest of the post is here.