The Autoimmune Expedition kick off party is scheduled for Wednesday June 26th.
It will be at the Showcase Snowboard, Skate, and Surf Shop in Vancouver (W. 4th and Burrard Street) from 7-11 pm. Everyone is welcome!!
Tickets are $10 at the door (gets you one free drink). There will be a 50/50 draw, beer from Red Truck Brewery, wine, snacks, music. There will also be great door prizes from a number of generous local businesses (MEC, ArcTeryx, G3, Rocky Mountain, Steed Cycles, Cactus Club, Moja Coffee, Bridge Brewery, etc).
I hope to see everyone there.
Click on the button below to see the newest Autoimmune Expedition promo video. This was my first attempt making a movie and I think it turned out pretty well.
My Rheumatologist, Dr. Jason Kur, just posted a note about my trip in the BC Society of Rheumatologists newsletter. It’s great to have his support promoting my cause in the medical community. Thanks Dr. Kur.
There’s no doubt that Wegener’s wreaked havoc on my lungs. I found an x-ray image of my lungs on the day I checking into the hospital in the fall of 2010. I’m no expert at reading x-rays, but it’s pretty obvious that it’s not good when compared to a healthy lug x-ray. The white area indicated bleeding. Most of the right lung (left when you’re looking at it) is in bad shape. I remember the ER Doc coming to see me after the x-ray and saying “your x-ray is horrendous. It’s amazing you don’t look worse then you do”. Reassuring for sure. A healthy lung should be mostly black, like below.
The disease has left me with a lot of scar tissue in my lungs. I’ve also had granulomas form in my lugs, which are a ball-like collection of immune cells. All of this in combination with Asthma has left me with around 60% normal lung function. If I take asthma meds then I can get this up close to 75%. This makes my trip an extra challenge. Mount Rainier is close to 60% of the height of Mount Everest. So in a way, this is like climbing Everest for me… Ha.
My x-ray in Oct 2010
- Normal lung x-ray
- xray photo bomb
Wegener’s Granulomtosis, or GPA, fits in the broad category of autoimmune diseases. It is also a type of Vasculitis. Vasculitis are a group of disorders that destroy blood vessels through inflammation. Wegener’s primarily affects the blood vessels in the sinuses, lungs, and kidneys. So why the Arthritis Society? Arthritis is a condition that affects the joints right? Most people probably don’t realize that there are over 100 different types of arthirtis, and yes, Wegener’s also fits into this category. Oddly enough one of the first symptoms of the disease for me was severe joint pain. Joint pain is still the first indicator for me that my disease may be flaring up again. I see an excellent Rheumatologist at the Pacific Arthritis Centre and many of the drugs I have received are commonly used to treat other types of arthritis.
Rare diseases with similar symptoms and treatment regimes are commonly lumped together in order to fund research in causes and treatments for the diseases. Wegener’s is one of the conditions in the subset of arthritis conditions call Systemic Autoimmune Rheumatic Diseases, or SARDS. Systemic diseases can affect any organ in the body. In my case, my lungs and sinuses took the brunt of the diseases, but my eyes, ears, skin, and joints were also affected.
I chose to support the Arthritis Society because I know that arthritis affects far more people than Wegener’s alone. In fact, arthritis is the leading cause of disability in Canada. My goal is to increase my audience but also to raise money for research that will directly benefit people suffering from the same disease as me. I am thrilled to have the support of the Arthritis Society in organizing this event. The money raised will go directly to SARDs specific research. My hope is that one day soon there will be a cure.
I headed down to Mount Baker in northern Washington for some spring ski touring and mountaineering training on the Easter long weekend. Ashley Weber and I spent two solid days of ski touring in the Mount baker backcountry early in week before meeting our significant others (Marie-Helene Marshall and Silvia Riccio) and our good friends Steve and Sarah for the long weekend. Ashley will be joining me on the entire Rainier expedition so it was great to get out and train. We enjoyed amazing weather for the weekend. Every day was sunny and mountaintop temperatures were close to 15 degrees on the weekend. It made for comfortable touring, exceptional views, and lousy snow quality.
We managed to put in 4 full days of ski touring, covering around 36 km of distance and 3500 m of elevation gain. We also put in one day of downhill skiing on the ski hill. This was the most ski touring I’ve done in a short period of time in well over 3 years. This training camp has given me more confidence about succeeding in my goal this summer. Now that the weather is changing I’m planning on getting out on the bike much more, but I feel like I can be ready for this adventure… and be fit enough to enjoy it!
If you haven’t been to Mount Baker and the northern Cascade Mountains I definitely recommend a visit. The mountains are spectacular! Mount Baker ski hill sits in the shadow of Mount Shuksan, which is slightly smaller than Mount Baker but arguably more impressive. You can see views of Mount Baker from the ridge tops. It often looks like it’s pretty close, but it’s a long trek along Ptarmigan Ridge to reach the base of the mountain. Check out my updated Facebook page for a full photo album.
As many of you know, I first became ill just a couple weeks after returning from my Honeymoon in the fall of 2010. In fact, the first real unusual symptoms I noticed came on while I was in Hawaii on my Honeymoon. I had horrible joint pain and a strange skin rash early in the trip, and by the end I had started coughing up blood. I ended up in the ICU only 2 weeks after getting back home. We still enjoyed our trip and managed to fit in snorkeling, surfing, and other fun adventures, but there is no doubt I wasn’t feeling 100%. Not the best way to start your marriage.
Well, Marie and I are taking the chance to re-do our honeymoon this spring. We just booked a trip to Barbados! 9 days of fun in the sun. We’ll do some surfing, kitesurfing, snorkeling, and maybe visit some of the surrounding islands. It will also be a good vacation to rest up before the start of the Autoimmune Expedition.