Tuesday, May 31, 2011
Morning - Stress with a capital S. This is the first morning that I woke feeling sick. I didn't sleep good at all and haven't had such aching legs, back, shoulder, and stomach. However, despite it all, considering the forecast for extreme May heat today, I was spinning toward Owen Sound before 7 am.
The only genuine peace I had this morning was when I re-routed my trip and took a couple of back roads that I knew from a family trip to South Hampton last August. I remembered Bruce Road 3, Concession 8 W, and the B Line up to Hwy 21 like it was yesterday. In 10k you travel through an area that you could stop and spend a lifetime. I had two dogs, one a big lab, the other a tiny little thing, chase me along the tiny stretch of Concession 8 W. The lab was a issue, I had to crank as hard as I could, but the little dog, that was fun. Along the B Line you see beautiful countryside with new homes as well as completely dilapidated structures now being used to keep cattle happy and out of the weather. As you get close to hwy 21, you pass two rows of concrete foundations from a dozen structures long since gone...a part of the changing world we live in.
As the sun fried my exposed skin and the sweat poured from me, the spin along 21 to Owen Sound yielded my Specialized's first breakdown. Without any apparent incident, my rear wheel began to wobble. After stopping and truing the rim straight again, I had to deal with some sort of chain alignment issue that I really don't know how was started nor how I corrected. What I do know is that after fighting the heat and the breakdown, the air was blue with some colourful language that simply has not been used until this day 11.
By the time we arrived in Owen Sound at 10 am, I had clicked another 50.6 km to my ride. A few hours r & r, and I plan to put the balance on the odometer.
Afternoon - Given that Lyme disease has become such a political debate between those who have the disease and those who for whatever reason deem it important to deny healthcare to those infected, it never ceases to amaze me how some people believe that suppressing the facts that Lyme is here in Canada is an appropriate way to deal with those who want to help with public awareness. What I have now and what I will never lose is the knowledge that someday what I am saying today will be fully accepted and those who choose to turn a blind eye today will eat crow in the future. To the naysayers - rather than accept the blind rhetoric of a healthcare system hiding from a world of evidence, simply open your eyes, seek the facts, and allow the facts to decide the outcome. We are not liars, we are not attention seekers, we are not embellishing what we are going through. Like the very doctor that misdiagnosed me for 17 years said in November of 2010 - ten years ago we didn't know what causes an ulcer, now we know it is a bacterial infection.
When a person is charged with a crime, our justice system deems the person to be innocent until proven guilty. However, if you claim to have dozens of symptoms that are readily accepted in dozens of countries around the world as being the clinical diagnosis for Lyme disease, in Canada, you are simply labeled as being crazy and quite literally end up being refused proper medical attention.
I thought I had the same rights as the next person, but over and over when it came to healthcare, my rights were regularly deemed secondary to others. Why do people with Lyme not have the same rights as the rest?
Posted by Cycle For Lyme at 10:50 PM
It is incredible where information about Lyme comes. Maciek and Kasia are here for a one year work visa from Poland. This morning while checking news from back home via internet, Maciek found a major news story about Lyme. It turns out that in Poland, the "Lyme Bus" travels all around the country reinforcing what is already well known - that Lyme is real and that it needs to diagnosed and treated quickly or it can become a serious, untreatable disease. Furthermore, they have what we would refer to as a booster shot that the "Lyme Bus" has for those who want it.
So where does this fit with the Canadian approach of deny, deny, and lie. Including myself, I know 4 people who our healthcare system has either performed major surgery on or attempted to perform on people that were actually infected with Borrelia burgdorferi, the bacteria that is Lyme disease. During our recent federal election, I was annoyed by Jack Layton's commercials about getting us more doctors. I emailed Jack's campaign, told my story, and even gave them my website. I told Jack, we don't need more doctors, we need better doctors. To this date, I never have received any response from the Layton campaign.
We uploaded the first rant done to date this morning - it is a window to the frustration that I see to a healthcare system that is flat out lying to the public out the serious disease that everyone seems to have known about for a long time.
Oh, and I spun my Specialized Secteur 29 plus clicks this morning. We had to stop for a while and miss some k's because of some dense fog. It is sunny and hot now, but I will hopefully be back spinning my wheels.
Evening - Did I say sunny and hot - holy cow- it was a scorcher out there today. At first I could smell bacon frying.............then I realized it was me......
We did an interview with the Kincardine Times early afternoon - Thank you to the reporter, Jennifer, for a job well done.
We also went and spoke to a couple of staff members at Inverhuron Provincial Park. They were great and provided us with what the provincial parks are providing park campers with every visit. The unfortunate thing is that ticks don't restrict themselves to provincial parks and the provincial government as a whole needs to provide this type of information for all of the public - everywhere.
I finished my 66k tonight in Port Elgin. Maciek used time-lapse photography to record the sunset.
Posted by Cycle For Lyme at 10:49 PM
Monday, May 30, 2011
Wow, what a day. The weather started off wet and dreary but turned out to a nice sunny afternoon. The thunder and lightning didn't start until 7:30 pm in the evening. As far as the ride went, I lucked out.The bad news was that Kasia, our "manager", had to go back to work in
Posted by Cycle For Lyme at 6:43 AM
Sunday, May 29, 2011
This morning was most unmotivated day for not wanting to cycle in the rain. The good news was that although it started with damp air and wet pavement, the rain never came. I cycled 49k from Wallaceburg to
on County Road 31. What an awesome road on a Saturday morning. The few cars that were on 31 were as respectful to my cycling as it gets. When we reached Sarnia we met with another of the strongest Lyme sufferers there could ever be. Christine Heffer is an inspiration to anyone suffering with Lyme. She has the determination to do what needs to be done to get our healthcare to stop denying that Lyme infected ticks are a part of our environment and that refusing to make it part of the general publics consciousness is more than just a shame, it is outright disgusting. The interview we did with Christine will hopefully be up on the blog in a couple of days - it can't be missed. The balance of my cycle tonight was through Sarnia . I set aside my usual cycling skills for part of the balance to cycle with the kids. Maciek and Kasia held me back, but it was to be expected that kids in their 20's can't keep up to a fit old man infected with Borrleia burgdorferi... For those who haven't checked the blog, you will see that county road 31 was the perfect road for a little cycle high-jinx and the three of us aim to please. Prior to writing this tonight, I spoke to my son Gavin at home in Sarnia . When I told him 70.5k today, he said it was good that I was no longer slacking off like the last couple of days. Newmarket
Posted by Cycle For Lyme at 7:55 AM
Saturday, May 28, 2011
I had done a little complaining last night about having only completed 10k yesterday. The quick and stern response from the kids was that this wasn't about whether or not I cycled 66 km per day but rather getting the message out about Lyme. Although I agreed, by 6:30 this morning my brain was still arguing the point. So by 7 am, I was spinning my way to Leamington, Ontario, getting in the k's that I deem so vital. However, with no fixed destination, I ended up on a country side road somewhere northwest of Wheatley spinning with not a thought in my head. After 20 years of living day by day, simply trying to get through life, not live life, I again found myself thinking about what my wife always says about riding her horse. Heather has always said that when she is riding dressage, all the stress of a career, the stress of an endlessly sick spouse, and as well as having a child, simply melts away the 800 pound gorilla that she carries around day to day (I have likely been at least 500 pounds of that gorilla). As I came back into Wheatley, I started seeing kids walking to the very school that I spoke at yesterday. In a flash what I was told last night by Maciek and Kasia hit me once again - it isn't about the k's I spin, its about the knowledge about Lyme disease that gets spun forward and the knowledge that less people will end up with an 800 pound gorilla on their shoulders. Oh, and by the way, just under 24 km done before 8:30 AM - and when I got back the RV.......Maciek and Kasia.......still sound asleep. OLD GUYS ON BIKES ROCK!!
We had another good day in gymnasium in Tilbury, Ontario, speaking to students. I know I am repeating myself, but kids sure can absorb information, and respond with good questions. It never stops amazing me how they pick up on what I miss and ask questions that provide great topics that I have not expressed. Thank you for listening Tilbury Area Public School.
I did another 29 plus kilometers late this afternoon. North of Chatham in Hwy #40 was the most aggressive driving I have seen yet. Maciek did a great job snugging up the distance between us, and really made me safe. I called the truck and trailer my 9,000 pound buffer zone. On the flip side, a white Ford F-150 passed me and slowed to a stop. As I passed by I got the thumbs up from the driver and moments later a young man stopped the kids and gave a donation. A very moving and much appreciated act that will never be forgotten.
Also on the road to Wallaceburg, I had at least half a dozen cars slow down, honk, and wave. These are the random acts of kindness that push me past the pain and keep me spinning my Specialized cogs down the road.
|Very nice young boy gave us a donation. Thank you!|
Posted by Cycle For Lyme at 7:11 PM
Thursday, May 26, 2011
Despite the fact that I have only cycled 10 km today, it was just the most exciting day for us. We went to and did two school presentations to students. I would Like to thank the principals of both W.J. Baird Public School in Blenheim and Wheatly Area Public School. The students were great. Not only were they polite to tolerate my unscripted presentation, they asked some great questions. I also had the opportunity to speak with and interview one of the teachers who actually has a 19 year old daughter who has been misdiagnosed with Lyme for approximately 7 years. Interviewing her was a like stepping back in time on what I have gone through. As she kept speaking, she kept bringing things that the good side of my brain had suppressed from my memory. All the horrific issues that I dealt with many years ago were such a parallel to the struggle and hardships that she has had to endure. To speak to a 19 year young woman with such a positive attitude and healthy sense of purpose and determination was such an inspiring thing. Watching her speak (and you will on the blog shortly) reflected the exact same feelings that made me so determined to put Cycle For Lyme together. The greatest thing I gained today was a very graphic reflection of what I have gone through in the past two decades, from someone else's eyes. The only downside to the day is that I so wanted to put another 10 or 15 km on the bike this evening, but between a wind off Lake Erie and the rain, I am going to have to call 10 km a success - I believe it was.
Posted by Cycle For Lyme at 10:42 PM
Started off with a great 18k ride in the morning. The weather, not my old body believe it or not, ended up being the limitation to not finishing my daily goal. Somewhere about 20 km east of Blenheim, I skies opened up and I was hit with heavy rainfall that soaked me to the core. After about 45 minutes of cold wet cycling, the rain passed and I was able to get into a layer of fresh dry clothes. The rain managed to keep at bay until a kilometer south of Blenheim when I was once again hammered by rain. When that the day ended on a soggy note.
Early in the morning I mentioned Lyme to an employee in the St. Thomas Walmart. I instantly received a reply back that a very good friend of hers had Lyme. When I asked how the person was doing, the reply back was that he was doing great because he had been diagnosed early, treated with antibiotics, and was cured with no long term problems. It would appear that it only took 5 days to hear back from a stranger, the importance of the message that Cycle For Lyme is trying to promote - that if doctors get themselves up to speed about Lyme and treat patients in a timely manner, people have the opportunity to return to a normal healthy life. As far as I am concerned, the fact that Lyme has been made such a politically sensitive topic is the main reason why doctors rule out the making the diagnosis. Doctors simply do not want to risk their medical practice or their careers by getting themselves involved in a diagnosis that is not being accepted as part of regular mainstream medicine. Lyme, even in the acute and fully treatable form, remains the elephant in the room.
I also had a nice talk with a police officer in St. Thomas about Lyme. The one thing that always amazes me when I explain what I am trying to accomplish is the positive and upbeat responses that I receive back. It is great to feel how fast a couple of seconds of positive can put a smile on your face for hours. I also met a store owner in Blenheim who agreed to distribute a healthy pile of my postcard flyers out to her community. Not only was she a regular cyclist, but in fact she had her own story about Lyme. Her dog was bit not by one, but by 3 ticks, but when she tried to get them tested for Lyme, she told me that testing would not be performed because the ticks bit a dog, not a person. This is an issue that is completely inappropriate. Whether found on a dog or found on a person, this country lacks any sort of proper statistical testing regarding the frequency of Borrelia burgdorferi in ticks. By refusing to test ticks that are delivered by the public, our healthcare system is ignoring the opportunity to get a better handle on the spread of this infectious disease. Ultimately, the fact is that the first reported case of a Borrelia infected tick occurred in Kenora, Ontario, in 1993. Ironically, the tick was removed from a dog that had never traveled outside the Kenora area.
Posted by Cycle For Lyme at 10:37 PM