Categories
personal

What to do… or, Why am I blogging again?

Don't let your blog die @DonnieMarges
Don’t let your blog die @DonnieMarges!

I’ve been a bit neglectful of my blog for a few months now. I update it once in a while, but my latest updates tend to be about things that have happened way in the past, that are lacking in depth and that are sporadic in frequency. This is disappointing because I view my blog as my primary place to write, reflect, share and communicate.

What happened?

Social media and the ease of instant gratification has happened. I rarely think to blog about anything anymore. It is so much easier to write a quick tweet, post on Facebook or share an impromptu photo online. Instant communication is great. But it leaves me feeling fragmented. Disjointed. Unhinged, even.

Then, when something major like my recent health issues come about, panicked posts to update friends and family become part of that spaghetti that you throw out on the wall, hoping that some of it will stick. Once I was feeling better, I wasn’t sure who saw which Facebook posts, who I talked to in person, who received my email updates and who was updated by someone else. That left me a bit bewildered about how to update everyone all at once. And that brought me back to my blog.

toddhdow.com has been my online home forever. And the content on that site is mine. I can download it. I can save it offline. I can import it elsewhere if I want. I can even easily delete some of my content if I want to. At the end of the day, my blog is mine and the content is owned by me.

Sure, I can delete my posts off of Facebook or Twitter or any other social network as well. But is it easy? Are you certain that you deleted all of your content? What if they change their terms of service? I don’t know about you, but I don’t really feel that I own my content on most social media sites. My blog categorizes my content in a way that makes it easy to manage. Social networks just aren’t built that way.

Don’t get me wrong. Social media is awesome. I love it. I love being able to keep in touch with people. I love keeping in touch with old friends, seeing how people are doing and sharing my experiences online. And there is no easier way to rally my friends to a common cause or keeping them in the loop on my various joys and concerns.

But to me, it just isn’t organized. It’s a big crazy jumble of stuff with no easy organized way of sorting and sifting. To an obsessive personality like me, it just isn’t organized enough.

So I come back to my blog. I’ve been sad that my blog has been neglected. I enjoy updating my blog. I value the outlet that it provides to me to share my thoughts, opinions and various ramblings. I find it therapeutic. And I like building my own little corner of the internet.

I decided to write a summary of my recent illness as a starting point, a marker on my return to blogging. I don’t know how long my return will last, but I suspect it’s going to be for a while. What makes me think that? I’ve got some ideas. They’re pretty cool ideas. They’re still rough ideas, but they are getting more clear each day.

Watch for my next post in the next few days. I’ll share some of those ideas with you then.

Todd

Categories
cystic fibrosis

Team Katie – Great Strides 2011

Folks,

As many of you know, our daughter Katie has Cystic Fibrosis. Katie was diagnosed with CF on September 30 2008. She was 17 months old at the time.

On Sunday May 29 2011, the Cystic Fibrosis Canada will be hosting the annual Great Strides walk for cystic fibrosis. We will be walking and invite you to join us for this annual event.

Please watch our video, which provides a window into our world:

CF, which affects the lungs and the digestive system, is the most common, fatal, genetic disease affecting Canadian children and young adults. Forty years ago, most children with CF did not live long enough to attend kindergarten. Today, half of Canadians with CF are expected to live into their 40s and beyond.

While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. When Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions each day with her.

Here’s a brief list of her regular medicine intake and treatment regimen:
– approx 20 pills a day (enzymes – they help Katie digest food);
– vitamin supplements;
– 2 to 4 Pediasure nutrition supplement drinks each day;
– Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 20 minutes each time;
– Percussion treatment – 20 minutes of hitting her chest and back – twice a day;
– Inhaled antibiotics – 2 weeks on, 2 weeks off year round;

Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:
– Oral antibiotics;
– Additional medicine in her nebulizer from time to time as her health dictates;
– Additional nebulizer and percussion treatment – typically 3 or 4 treatment sessions a day when she’s sick;

Each year, on the last Sunday in May, friends, family and co-workers of people with cystic fibrosis participate in “Great Strides”, which is Cystic Fibrosis Canada’s largest national fundraising event. Walk with us on Sunday May 29 2011.

To assist, you can:
1. Donate money;
2. Donate and/or collect pledges and Walk with us on Sunday May 29; and/or
3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 29 at Safari Niagara in Stevensville, click here:
http://my.e2rm.com/TeamPage.aspx?teamID=204804&langPref=en-CA

To sponsor us directly in our fundraising efforts for Team Katie, click here:
http://my.e2rm.com/personalPage.aspx?registrationID=1077314&langPref=en-CA

We thank you for your support. Our wish is that one day, CF will stand for “Cure Found”.

Thanks!

Todd, Julie, Noah, Katie & Riley Dow

Categories
cystic fibrosis

CF in the news: “Surviving cystic fibrosis” in Macleans (Aug 31 2010)

Ashley Donelle - Macleans Aug 31 2010
Ashley Donelle - Macleans Aug 31 2010

Thanks to Cathy Gulli and Macleans for sharing this story about Ashley Donelle, a 20-something Montreal woman with Cystic Fibrosis who recently underwent a double lung transplant.

The article charts Ashley’s suffering with CF, the transplant that saved her life and the ongoing health concerns that come with being a transplant survivor. The article also highlights Ashley’s health improvements since her surgery. Ashley words: “I had to train my brain that my body wasn’t sick anymore.” She is now blessed with good health. Health that allows her to live and celebrate life every day with her two children.

There is good news in the ongoing research and what it already means for CF sufferers: “Life expectancy has increased by about one year every year over the last decade—to a median age of survival of 47 in Canada.”

More encouraging is what’s to come. Dr Francis Collins, one of the co-discoverers of the CF gene, is quoted in the article as saying, “I’m optimistic enough to say that it will be a story about a disease conquered.” That day can’t come soon enough.

What conquered will mean remains to be seen. Dr Felx Ratjen, head of CF clinical research at the Hospital for Sick Children in Toronto, “would rather talk about control of the disease because this is a more realistic view.”

Many are optimistic that technology will yet prove to be a great equalizer when it comes to CF. A cure or control can’t come soon enough. Just ask those currently suffering from the disease. Over 3,600 CF patients require daily treatment to help stave off the effects of this fatal genetic disease.

But for now, stories like Ashley’s offer motivation to those that find themselves challenged by the disease.

Thank you Ashley for sharing your story. You truly are an inspiration.

Todd