Friday, October 30, 2015

Headfirst in Pollen

I was working on a post, but ran out of steam. So glad to see Friday finally here. And I bet this little guy is, too.

Monday, October 26, 2015

2016 Calendars and Holiday Cards have Landed!

Did you know there are only eight Fridays until Christmas? I’ll give you a few minutes to get over the shock. Come to think of it, you might need more than a few minutes. And yes, I panicked when I found out, too.

Although I ordinarily am of the opinion that holiday things it should not arrive anywhere until after Halloween, it’s okay to break that rule when mail order is involved. Right?

As always, it’s been a joy making these products for you. I hope you enjoy them.

If you enjoy my photos and would like to hang them on your wall, or give them away as gifts, you have two options for calendars this year. There is the traditional The Seated View calendar

And for the second year in a row, a calendar specifically for those of us who enjoy watching birds.

I’ve also put together some new holiday cards, as well as a couple of old favourites. Most are nondenominational, but there is one specifically for Christmas.
Want to rev yourself up in preparation for the release of the second Your Life with Rheumatoid Arthritis book in the spring? Take a look at the Your Life with RA gear (customizable to different bags, mugs, and more)

And if you want some gift ideas, check out the high-quality posters and canvas print.

OK, get set... get ready... shop!

Tuesday, October 20, 2015

Guest post: Pregnancy and Parenting Survey

Are you a parent with arthritis? Do you have arthritis and want to have a family, too? Today’s guest post is by Laurie Proulx from the Canadian Arthritis Patient Alliance (CAPA). She is the lead on a project about pregnancy and parenting with arthritis. CAPA has created a survey to find out what kind of information people with arthritis need about pregnancy and parenting with the disease. To find out more and take the survey, please visit the CAPA pregnancy and parenting survey page. Please also share this important survey to as many people as possible can participate.

Take it away, Laurie!

Laurie with Claire

Please tell us a little about yourself, Laurie.
I can hardly remember what it was like to not have RA. I was diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) when I was 14 years old, 24 years ago. It was a long, hard road to diagnosis. I recall my Mom having many an argument with my family doctor in order to merely get a referral to a rheumatologist. The uncontrolled RA took me from my life as a typical teenager – playing sports, dancing and playing piano – and moved me into the world of doctors, physiotherapists, hospitals, lab tests and constant pain. These challenges helped me adapt to all that life has thrown at me. Despite my illness, I completed a university degree, went on to marry a wonderful man, I work as a human resources professional and I’m the mother of two children – Claire (8 years old) and Charlie (3 years old). 

How long have you been involved with CAPA and what do you do there?
I’ve been a member of the CAPA Board of Directors since 2006. I had hardly ever met a person living with arthritis prior to this time and I was so thrilled to meet so many kindred spirits. I’ve been involved as a consumer in research workshops and projects. I’ve participated in numerous consultations with Health Canada ranging from the withdrawal of Vioxx from the market, drug risk communications, drug shortages and pediatric and maternal drug safety. The voice of the patient – as provided through CAPA – is very much needed to help guide policy makers in making the right decisions.
With the support of CAPA, I’m leading the pregnancy and parenting with arthritis project. The first phase of the project is the launch of a survey to identify patient information needs as it relates to pregnancy and parenting. The ultimate goal is to develop an educational resource for people living with arthritis.

Your latest initiative is a survey about pregnancy and parenting with arthritis. Why is this topic important to you?
Since becoming a parent, I’ve had to overcome so many different obstacles and challenges. I was shocked to see that my medications are not tested in pregnant women so I was told by the medical community that I would have to either come off my medications or live with the unknown risk of what the medication could do to my unborn child. This is truly a hard pill to swallow when you’re growing this human being inside of you.
I decided to not bear the risk and stopped my medications when I was pregnant for both of my children. The first pregnancy went well, but things went terribly wrong for my second pregnancy. My RA went into a bad flare in my third trimester. I found out that I have arthritis in a lesser known set of joints – the cricoarytenoid joints – which control the opening and closing of the vocal chords. A flare of these joints can cause breathing difficulties and/or changes in the voice. My breathing got so bad that I went into respiratory arrest during my 37th week of pregnancy. I crashed but luckily I was being prepped for a caesarian section. I think somebody upstairs was smiling on me as both me and my little boy could have died that day. 
Caring for young children can also be demanding for people with arthritis. But when I look searching for information to help me through these challenges, there was hardly anything available. For example, how can I open this car seat when my hands are so badly damaged from RA? How can I carry my child around for hours on end when my body hurts so much? I found the fatigue particularly difficult to manage. My children were never great sleepers so I turned into a train wreck in no time at all.
Laurie with Charlie
What do you hope the survey will accomplish? What will it be used for?
The survey will identify the information needs of people living with arthritis when they are navigating through pregnancy and parenting. The survey is intended for individuals living with arthritis and for people in their social support network (e.g. spouses, family members, rheumatologist, occupational therapists). The survey asks respondents to indicate the importance of certain topics during pregnancy/prior to conception, and parenting children in different age groups.  
The survey results will be analyzed and used to develop an educational resource for pregnancy and parenting with arthritis. Similar to how the survey questions are laid out, it is intended that the educational resource will provide information based on the different stages, such as pregnancy/prior to conception, parenting younger children (newborn to age 5), parenting school age children (age 5 to 12) and parenting older/adolescent children (age 13 and up).
It’s incredibly important to hear from the broader community of people living with arthritis to see what they think is important and what they would like to know more about.

Where can my readers learn more and take the survey?
You can learn more by visiting this page on the CAPA website. There is a link to the survey, which is available in both English and French. Please share the survey information widely as it is crucial that we hear from as many people as possible!

Friday, October 16, 2015

Self Care aka Dessert

I had all sorts of plans for this week, many of them doing related to being part of what ArthritisResearch UK is doing for their National Arthritis Week. None of it happened. Because I’m really tired.

I’m so tired I’m close to curling up and crying.

It’s my own fault. September was a wild ride of going back to work, being part of #RABlog Week, and somehow finishing the first draft of Book 2 in the Your Life with RA series.

I don’t know how I did it, either.

However, I have become extremely familiar with the consequences. For the past three weeks, I have been exhausted. I wake up not feeling rested, wanting nothing more than to stay in bed. I drag myself through the day until naptime, then keel over into a dead sleep. Then there’s dinner, an evening with some more stuff that needs to be done, a bit of drooling in front of the TV, and then at last to be. Except I’m so tired that my mind’s a whirring mess and I can’t sleep. So I take muscle relaxants which help me sleep, but increases the daytime zombiefication. And all the time, I fall further and further behind.

It’s a crash. It’s a really big crash. And because Fall has arrived in all its splendor and unpredictable weather patterns, it’s combined with a flare of both my RA and my Fibro. I miss summer already.

And it’s October and there’s so much to do. Did you know there are only 10 Fridays left until Christmas?

Oh, look. It turns out I am writing about the realities of living with RA after all.

A friend of mine (she knows who she is) occasionally puts an auto reply on her email indicating that because of her health, she is taking time to do self-care, and will get to the email when she can.

When I saw that for the first time, I was gobsmacked. You can do that? You can actually do that?!

Why don’t I do that?

Because I suck at it. When I was a child, my parents taught me to eat real food before dessert. In the convoluted workings of the accursed Protestant work ethic, somehow, taking care of myself in the face of The List gets translated to qualifying as dessert.

Yes. I do know that’s crazy. But tell me this, can you do it?

I’m pretty sure we all need a wife.

And then you get to the point where it becomes blatantly obvious that you have no choice. You have to take care of yourself or you will pay much bigger consequences. And as I’m writing this, it’s just occurred to me that I’ve been here before. Many times. This is my body begging me to be nice to it and I haven’t been.

I’ve been so tired I couldn’t hear it escalating from the nice asking, to begging, to… well, screaming, That urge to cry I mentioned isn't me. It's my body weeping with fatigue and frustration that I haven't given it what it needs. And if I don't,
it’s going to make me sit still.

So, since I don’t want to get sick, this is me making it official. I’m going to take a week off from the work ethic and the guilt.

I’m going to eat dessert first.

While I do that, I could use some help (or a smack upside the head). I need some suggestions - how do you practice self-care?