|
James Christie's Cycling Progress
The total approximate
cycle distance is 2,000 kilometers. It is the goal for
James Christie to ride this entire distance, 66 kilometers per day
for 30 days. The follow chart tracks his progress.
|
Day |
Date |
Approximate
Location |
Km per day / to date |
Distance
Cycled |
Total Cycled |
|
1
|
May 21
|
5k
northwest of Dundas |
66 / 66 |
71.6 |
71.6 |
| Comment |
That
was the best first day it could have ever been. Great
weather, good drivers around me. I would first like to
thank my family and friends there to send me off. I would
then like to show my appreciation to all the people suffering
with Lyme disease that have emailed me in the last couple weeks.
Hearing your struggles, your encouragement and especially your
thanks has really meant a lot. And, we had a wonderful man
stop and make a point to speak to us tonight about a good friend
of his that recently pasted away from Lyme after a 4 plus year
battle with Lyme. To witness his frustration at what his
friend went through and the blatant neglect that his friend
received from our healthcare system. These are the stories
that need the ear of our politicians. All from the bite of
such a tiny, slow-moving creature. An finally, Magic and Kate,
herein known as "the kids", had a great meal courtesy of East
Side Marios. The email received was "ES Marios Rox."
|
|
2
|
May
22
|
10k
north of Simcoe
|
67 / 133
|
70.2
|
141.8
|
|
Comment
|
The first 36
km were a breeze for the body and good for the mind. The
second 34 not so much. A wind came up from the south and I
was headed straight into it for the last 20 -25 km. It
really puts the muscles to the test and makes me realize how
lucky I am to be able to do something that literally months
ago I would never have dreamed I could do.
We had a
man in a big water truck who saw the "Ride For Lyme Disease" sign on the back of the RV stop and give us
$20. I didn't go into detail with him about his connection
to Lyme, but what was clear was that he certainly was of the
opinion that what we are doing is important and long over
due. Less than an hour later, just outside St. George,
Ontario, I spoke to a
woman who also was fully apprized about Lyme and proceeded
to vent that something has to be done to correct the way
that our healthcare system is ignoring so many people with
Lyme disease. A couple of hours later I was lost in
Brantford (I actually managed to get lost twice in
Brantford) and asked a woman for directions. After putting me
back on course I explained what I was doing, and without
skipping a beat, she described how years ago her daughter had a red
rash on the inside of her left leg (that is the same as me)
and that the doctors didn't know what it was. She
then explained that the doctor cut it out and her daughter
still has the scar. She then said that they were later told
that it was Lyme disease and her daughter was treated with
antibiotics. I didn't let getting lost twice stress me
out, and ended up meeting someone who told me the most
incredible story about her direct connection this disease.
|
|
3
|
May 23
|
4k
east of Aylmer |
67 / 200 |
58.8 |
200.6 |
| Comment |
This
morning started off with wind and ended with wind. I
unfortunately had to pack it in at only 46 kilometers because
the wind was so strong from the south west it was knocking me
off the road and after hitting the soft shoulder of Hwy #3, it
was no longer safe for biking. None the less, it likely
took more energy today to travel 46k than it took to cover 70k
yesterday, so the accomplishment feels good, sore, but good.
I received a donation today from a man named Todd. I
subsequently found out by email that Todd was one of the
numerous people that cycled with me on Saturday. We only
spoke for a minute or so as we left Mississauga and entered
Oakville, but that is a minute that I will not be forgotten.
Todd, thank you for both the encouragement Saturday and for the
donation today!
Update:
After an rain-free thunder and lightning display passed over,
the wind dropped off considerably. And with that, I ended
up putting another 12.8 km on the bike, just enough to meet the
200 km goal. |
|
4
|
May
24
|
New
Glasgow
|
66 / 266
|
73.8
|
274.4
|
|
Comment
|
I have to
admit that I was like a snail getting myself moving this
morning. It would appear that after yesterday, one
look at the wind outside and any motivation I had went
south. The ride into Aylmer was without a doubt, the
hardest yet. We arrived in St. Thomas and I decided to
bypass the town and start again on the west side. This
turned out to be a good plan and I put 35 km on the odometer
in record time. To top up my day, back in St. Thomas
this evening, I cycled over 18 km through and around town to
end on a very positive note. And we saw and
photographed the most beautiful herd of cows ever.
Kate promises to eventually get one of them up on the blog.
Starting on
the downside, this morning was tough, however, by the end of
the day, it was a great sense of accomplishment.
We were waiting at a road construction stop, and ended up
speaking to the flagman. When he found out what we are
doing, he immediately grabbed for a five dollar bill and
wished us all the best. The general open consideration
for what we are doing is such a wonderful part of this
journey.
|
|
5
|
May
25
|
Port
Alma
|
67 / 333
|
60
|
334.4
|
|
Comment
|
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.
|
|
6
|
May
26
|
4k
west of Tilbury
|
67 / 400
|
10
|
344.4
|
|
Comment
|
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.
|
|
7
|
May
27
|
5k
north of Wallaceburg
|
66 / 466
|
53.2
|
397.6
|
|
Comment
|
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.
|
|
8
|
May
28
|
Highland
Glen
|
67 / 533
|
70.5
|
468.1
|
|
Comment
|
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 Sarnia 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 Borrelia 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
Newmarket. 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.
Please note -
the kids had to help me with my spelling tonight.
|
|
9
|
May
29
|
Bayfield
|
67 / 600
|
101.1
|
569.2
|
|
Comment
|
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
Toronto for tomorrow, so we put her on the train in Sarnia
at 6 am this morning.
The good news
is that it appears that Kasia has been holding me back from
my full potential (just kidding), because today I cycled
from Sarnia to just south of Goderich, at total of 101.1
kilometers........who is the slacker now Gavin Christie.
It may be no
big deal for an athletic young adult to spin 101.1k in a
day, but quite a milestone for a 47 year old guy who less
than a year ago was sleeping 18 to 20 hours a day for days,
even weeks at a time.
While
videoing Maciek swimming in Lake Huron (I have it recorded
because I couldn't quite believe it myself), we met three
woman on the beach who all knew something about Lyme but as
with most, did not know the truth regarding the devastating effects
it can have on one's life and that of one's family. Ladies,
thank you for the great talk!
It also
occurred to me that I need to thank Paul at BikeSports in Newmarket, Ontario.
Paul set my Specialized Secteur Sport up about 5 days before
I left for this trip, and I must say it has been flawless
thus far. It took some time, but it was well worth the
wait. Thank you for your attention to detail Paul.
|
|
10
|
May
30
|
3k
south of Kincardine
|
66 / 666
|
66.5
|
635.7
|
|
Comment
|
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.
|
|
11
|
May
31
|
Allenford
|
67 / 733
|
67.6
|
703.3
|
|
Comment
|
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
decide for yourselves. We are not liars, we are not
attention seekers, we are not drug addicts nor drug pushers, we are not embellishing
the pain that 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. Just because my doctor had no training
about Lyme and was incapable of diagnosing it, doesn't mean
it isn't real.
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.
My
expectation was that I
would have the same rights as the next person whether in an
emergency ward of a hospital or in my doctors office, yet
time and time again, my rights were
secondary to others. Just because many healthcare workers do
not have the knowledge or the capacity to comprehend what
someone with Lyme is going through, does not give them the
right to diminish the patients rights.
|
|
12
|
June
1
|
Craigleigh
Provincial Park
|
67 / 800
|
67.4
|
770.7
|
|
Comment
|
Morning -No matter
what the weather, how my body holds up, today will be a
great day. My wife, son, and mother are meeting us
today and I will be riding a section of today's journey with
my son, Gavin. It doesn't get any better than that.
Gavin and I
bicycled from Meaford to Craigleigh Provincial Park on the
bike trail that runs along an railway line, a total of
approximately 25 km. We got to talk the entire way and
I had the opportunity to hear everything I missed in the
last 12 days. It was as good as it gets - thanks
buddy!
After I
cycled into Collingwood, Maciek, my mom, Heather, Gavin, and
I had a late lunch and spent some time together before I
headed off to Wasaga Beach where I ended my day 67.4 ahead
of yesterday.
The wind was
wild all day. I ended up being hit with gusts from behind, the
side, and from the front. And finally, to top off the
perfect day, I had my first flat tire which ended up being a
sliver of metal that went through the tire, the flack
jacket, and the tube with no difficulty at all. A
quick patch and ready to roll.
It was great
to see my family and have a bit of a break (although I
didn't slack off Gavin) from the routine that has developed.
|
|
13
|
June
2
|
7k
west of Coldwater
|
66 / 866
|
37.4
|
808.1
|
|
Comment
|
I must say I
would have preferred to have cycled more than 37 km today,
but given the wind conditions as well as the hills that my
old body had to peddle up, my legs are of the opinion that
they cycled at least 100k today - and who am I to argue.
It was 8
degrees Celsius this morning and I am guessing that the wind
was at least 50 kilometer per hour. That would be fine
if the wind was stable, but it was gusting from all
directions as it swept through the hilly terrain between
Wasaga Beach and Coldwater. My feet went from freezing will
no toe warmers on to boiling with the warmers. It was
a crazy ride. Two days ago I was cycling in record
temperatures of 29 degrees, today I was cycling in 8 degree
weather. If this isn't extreme I don't know what is.
We managed to
get into speak to the students at Huronia Centennial Public
School in Elmvale, Ontario. The staff and students
were very receptive and it was a great opportunity to spread
the word further about Lyme. Thank you very much for
listening Elmvale.
We detoured
off the main road to visit Big Chute, the marine railway
that connects boats through the Severn Waterway System.
There will be a couple of photos up on the blog later.
While at Big Chute, I took the opportunity to spread the
word to a couple of small groups of people. It always
amazes me that people that know about Lyme know the basics
but rarely seem to understand the serious impact it can have
if not treated quickly. Most people just simply do not
realize that such a tiny little creature as a tick can be
such a life changing and debilitating beast.
|
|
14
|
June
3
|
10k
north of Nobel
|
67 / 933
|
102.8
|
910.9
|
|
Comment
|
Today was one
of those days
when you realize that you are so close to something that you
lose perspective. We started out from Mactier,
Ontario, just after 7 am and were the 29 km into Parry Sound
in no time. After getting supplies, we went to the
town pier and met a man from Mississauga that was looking
after a 100 plus foot vessel for a friend. When I
explained what we were doing, his faced literally lit up.
He had a tremendous working knowledge of Lyme as well as
various other diseases that ticks are the carriers of.
Furthermore, one of the most matter of fact comments he made
was that I must have been diagnosed by a Naturopath.
This
naturopath comment is something that I have had directed at
me many times. The fact is, I was diagnosed by a Steve
O'Neill, a Practitioner of Traditional Chinese Medicine.
What continues to surprise me, whether knowledgeable about
Lyme or not, is the shear number of people who have made
such derogatory comments about their doctors inability to
properly diagnose the illness and how so very many times
that people have had to rely upon Naturopaths to identify the
problem.
Without a
doubt, one of the most frustrating comments made by the
people of Ontario that I have spoken to is the rushed
feeling they receive from their doctors. And it is
without a doubt that the overwhelming majority of these
people are of the opinion that this rushed method of
providing healthcare is ultimately why it is taking people
so much time to be diagnosed. The comments I receive
reflect the exact reason why I believe my own doctors could
or would never have properly diagnosed me in a thousand
visits to his office. The very manner in which my
doctor looks at treating his patients is designed to fail.
In every examination room in my doctors office is a sign on
the wall that says, "One health complaint per visit."
The very
nature of providing a sign with such a narrow minded view of
the complexities of the human body speaks volumes a to what
the doctors method of public funding is based on. My
doctor wanted me to come in Monday to tell him about my
chronic chest pain, then Tuesday to tell him about my
chronic migraines, Wednesday about the chronic muscle pain,
Thursday about the chronic fatigue, and Friday about chronic
sore throats. Why get paid $40 in 6 minutes when you
can get paid $200 in 30 minutes. Ultimately, by simply
refusing to look at the big picture, it is all but
impossible for a physician operating with such a
self-gaining mandate to ever diagnose a disease as complex
as Lyme.
It is no
wonder that so many doctors hold such open contempt for
alternative medicine. When a Naturopath or
practitioner of Traditional Chinese Medicine evaluates a
patient, he or she looks at the big picture as the starting
point. How can anyone formulate any opinion in what is
potentially wrong with a patient unless then are aware of
all the negative aspects that the patient is facing.
It seems like such a basic principle, yet our healthcare
system has designed a payment schedule for doctors that
promotes the opposite. I mean really, as our society
continues to get sicker and therefore needs to rely on our
doctors more, the doctors continue to make more money
through more visits, as in my case, without every having to
identify what my actual disease was. The truth is that
there really is no money in good health - and the signs in
my doctors examination rooms sadly promote the fact.
We also
stopped in Britt, Ontario. For anyone who has read my
personal website,
www.LivingTheLymeLife.com , yes that is a pun, you will
know that the first symptom I had from my July 1989 tick
bite was in August of 1989, when I had the worst flu-like
symptoms while parked in my boat at the government of Canada
pier at Britt. I was sick for days and when I left the
pier the rash on my leg was huge, inflamed, and very sore.
However, at the time, I had no idea that there was such a
major connection between the flu-like illness I had just
gone through to the thing on my leg.
It simply did
not occur to me until I was a few kilometers away that the
84 kilometers that I already cycled by the time I got to
Britt were the most significant kilometers that I have
cycled to date. To arrive under my own power to a
place where the course of my health had taken such a
terrible change, was empowering to say the least. To
just sit on the pier with my bike and realize that I have
come full cycle from a disease that many simply never
recover sure made the day real.
I cycled
straight through to Grundy Provincial Park. For the
day, the old insurance scamming drug addict guy with MS,
Lupus, Chronic Fatigue syndrome, Fybromyalgia, Autoimmune
Disease, and the best of all, the faulty heart valve, cycled
102.8 kilometers today, and I must say loved every
second of it.
|
|
15
|
June
4
|
Cranberry
(Hwy #69 at Hwy #522)
|
67 / 1,000
|
0
|
910.9
|
|
Comment
|
Grundy
Provincial Park is at the junction of Hwy 69 and Hwy 522.
My wife, Heather, and my son, Gavin, are driving up to spend
the day and night with me and my Specialized gets a well
deserved day off. I will be heading north to Sudbury,
sometime tomorrow afternoon.
|
|
16
|
June
5
|
Hwy
#537, 8k south of Hwy #17
|
66 / 1,066
|
59.6
|
971.5
|
|
Comment
|
3 AM - I guess
it had to happen sometime. Of course I had always hoped that
any Lyme left inside me would give me a break for 30 days,
but that is a tall order for a disease that entrenches
itself so deeply into tissue and organs.
It has always been that the more I do, the more I flush the
bacteria out, resulting in what I refer to as an "outbreak".
I have to assume that the 102 km push north on Friday along
with the wind I peddled into was enough to run my body down
to the point where dormant Borrelia burgdorferi had an
excuse to have a party in my veins.
In the last 12 hours, I have had classic rotating symptoms.
It started about 3 pm Saturday in my throat, went to my
sinuses, then gave me what I call the brain fog, and by 8 pm
transformed into quite a pounding headache. Now, at 3 am, I
have been woken up sweating with a fever and my stomach is
on fire with pain.
8 AM -
Awake again, the pain in my stomach is still going strong.
I also have upper jaw pain from one side to another.
If there was any doubt (there wasn't), this is Lyme at its
finest.
12:45 PM -
Finally started north up highway 69 to Sudbury. Not a
heavy headwind, but it would have been much easier if there
had been no wind at all. I ended up doing 59.6 km by
the time I was at the divided highway.
My
motivation for enduring the pain was simple. I simply
keep thinking about the people I have met in the last few
weeks that are so horribly affected physically by this
disease and how I am so dam lucky to be limited to a pain in
my stomach. I don't think I am lucky to be where I am,
I know I am.
I don't
wish what I have been through on anyone, but really, if I
could zap what has gone through me in the last 24 hours into
some of those at the top that determine what we at the
bottom of the healthcare food chain go through, I have no
doubt that people like the ones I have met in the last few
weeks would no longer be treated as second class citizens,
and that finally something would be done to stop the spread
of this disease.
One thing is
certain, pain or no pain, I will be spinning my peddles east
from Sudbury bright and early tomorrow.
|
|
17
|
June
6
|
3k
east of Verner
|
67 / 1,133
|
116.9
|
1,088.4
|
|
Comment
|
While putting
$140 in diesel in the truck this morning I told the woman at
the gas station what I was doing. When I was done, I
paid her $140 and got $20 back. Thank you very much
for listening and hopefully you r photo will be up on the
blog soon.
While in
Sturgeon Falls, we met a man who knew all about ticks, all
about what to do, all about the lack of knowledge by the
public and the lack of knowledge of the healthcare
system......he then explained that his wife was from
southern Illinois, where everyone is educated about ticks
and the realities about Lyme.................Hmmmmm, where
have I heard that before. Canada simply has to pull
its collective head out of the sand (or anywhere else it is
stuck) and get the information out to the public and get its
doctors and healthcare workers up to speed. Waiting
any longer, as far as I am concerned, is nothing short of
blatant negligence.
There is
now a brand new tourist attraction that will be bringing
people into the Markstay, Ontario, area by the bus load.
If you follow highway 17 about 70 meters west of Pioneer
Street and highway 17, in fluorescent pink paint you will
see the words "Cycle
For Lyme 1000 km JGC Magic"
sprayed onto the edge of the asphalt. And in the event
you are a police officer and are reading this - I have no
idea how it got there..............
As I left
Queens Park on May 21st, I had many things on my mind.
One of those things was if I could at least do 1,000 km of
my 2,000 km route, then as far as I was concerned, Cycle For
Lyme would be a success. Well, to support the success
theory, I cycled 116.9 kilometers today, making today the
best cycle day yet.
We had a good
laugh at the Lake Nipissing look out point on Hwy 17 between
Sturgeon Falls and North Bay. I rolled in about a
minute in front of Maciek and immediately proceeded to hop
up on the nice big flat fence top and take of my shoes so I
looked like I had been there for an hour. Two minutes
later, Maciek is out of the truck, camera ready. 30
seconds later I was attacked by at least a hundred black
flies. As I scrambled to put on my shoes, Maciek was
immediately attacked as well. I spent maybe 12 seconds
looking at Lake Nipissing, Maciek less than 2 seconds.
I know I got one bite on my leg and one on my left arm.
Maciek figures at least two as well, but intends to provide
me with an update in the morning.
The bike took
a beating on a short section of road construction. The
vibration shook my stem loose as well as put my rear tire
out of alignment. Then, the dust from the recent
asphalt grindings got into both the gear changing and brake
components, causing everything to seize up. It was
close to 2 hours worth of repairs to get my Specialized
ready for morning. We are staying less than 200 feet
from where an all night road repair crew is repairing a
broken water main. They can make as much noise as they
like - I don't think I will have any trouble sleeping
through.
|
|
18
|
June
7
|
15k
east of North Bay
|
67 / 1,200
|
86.5
|
1,174.9
|
|
Comment
|
There is a
reason this is being posted a day late. We ended up
stopped for the night on a short dead end road about 10 km
east of Deux-Rivieres, Ontario, where we had no cellphone
communication, no OnStar communication, no Blackberry, no
Mobile Internet. After 18 days, I finally found the
spot where you can get away from it all.
My right knee
has been a bugger for well over a week. I have had
bursitis for almost a decade. However, despite this,
it has not slowed me down the least bit. The left knee
on the other hand, or leg as it were, is another story.
I have never had any problems with my left knee - until
Monday of this week. What started as mind discomfort
on Monday has turned into a significant pain today. We
ended up having to stop and ice my leg every 15 km in order
to push 86k under the peddles.
Hopefully
this will be an issue that fades soon.
We spoke to
several people in Mattawa that had a good understanding
about Lyme and shared many stories about the state of our
healthcare system. This blog isn't intended to act as
a negative zone for lashing out at healthcare, but really,
to hear such frustrated stories of people have gone through
really brings home the point that the emperor has no
clothes. I cannot thanks those who listened and shared
enough for their personal experiences and candid perspective
on what changes need to be made.
|
|
19
|
June
8
|
15k
east of Mattawa
|
66 / 1,266
|
67.1
|
1,242.0
|
|
Comment
|
Did I
mention my left knee?
After the
first 15k I knew that something was not right on the left,
so I backed down to 10k between ice packs and time on the
couch. However, on or about the 47 km mark, I don't
believe I actually heard the three popping sounds, but I
sure felt them. After waking from a two-hour sleep,
Maciek read me the riot act regarding stopping cycling.
However, being the pig-headed Christie that I am, I put on
the bee suit and the shoes and told him we were trying 10k
or less. The good news was that I did about 13k mostly
pain free with little or no physical impairment to cycling.
I then finished the day by peddling into the beautiful town
of Deep River, Ontario, where we are now.
As for
tomorrow, the first thing I am doing is heading to the
hospital to get some advice on what the heck happened and
what I can do about it.
What I didn't
mention yesterday and also need to mention today is that
anyone who hasn't traveled the road called highway 17 east
of North Bay, needs to. This is without a doubt some
of the most beautiful country with foothills, watersheds,
and nature all around you. The hills east of North Bay
are also without a doubt the steepest and longest that I
have had to climb (my left knee as proof), however, despite
a day that was hard on me and equally hard on Maciek, I
wouldn't miss the scenery for the world, and am quite
cognizant that it has been a privilege to have been so lucky
to have been able to pain my way up and down every foothill
that I met.
One other
thing I should mention - never in my life have I seen black
flies that are so relentless as they are here. I swear
that if they all got together, they could have picked me up,
bike and all, and lifted me over some of those hills.
|
|
20
|
June
9
|
Deep River
|
67 / 1,333
|
0
|
1,242.0
|
|
Comment
|
The
numbers say it all. Today was a unintentional holiday.
FYI - I went
the Deep River and District Healthcare Center and got some
very good, and very professional advice.
It seems that
my knee injury is a combination of too many long hills
between North Bay and Deep River along with increasingly excessive play in my
left bike shoe cleat that has been allowing too
much movement in my left foot. What the doctor
suspected is that along with my age, and the added pressure
that I have put on the knee, the movement in the cleat has
strained some cartilage, causing inflammation. Please
note that he was obviously much more technical and detailed
than I and my accounting is quite simplified.
After
determining that a day off would do a lot of good, Maciek
and headed to Renfrew where I will be heading out from in
the morning. Along the way, while stopping for fuel,
we ended up meeting and speaking with a couple who have
friends with a 30 year old daughter with Lyme that are
currently in New York because no proper treatment is
available in Canada. What an incredibly small world
that we live in. If Maciek hadn't jumped out of the
truck and started the conversation, we would have never
known just how close are lives are and what others have
learnt about Lyme disease the hard way.
I would also
like to thank the doctor, I wish I had taken don his name,
but did not think of it at the time. His diagnosis
also included where I could go get new cleats for my shoes,
which is a testimony to all that is well and good about our
healthcare system. There are so many kind and caring
people within the system, it is just such a shame that they
are being prevented from learning the true facts about Lyme
from those who control and manipulate the healthcare system
from the top down.
And lastly,
many thanks from Eric at GearHeads in Petawawa, Ontario.
Not only did we have a great chat about Lyme with Eric, but
giving me a super discount on new cleats was an unexpected
gesture that is very appreciated.
I may repeat
myself, but wow are their a lot of good decent people in
this country and it is simply a pleasure having such an
incredible opportunity to come into your communities and be
made to feel so welcome.
Tomorrow, if
all in the knee department is well - Ottawa it is!
|
|
21
|
June
10
|
Ottawa
|
67 / 1,400
|
104.1
|
1,346.1
|
|
Comment
|
I left
Renfrew at 7:15 and blasted through 51 km by 9:45 AM.
Now for the
best part.....I met three people (2 women and a man) on
bikes having a break in the little village of Kinburn,
Ontario. I thought it would be a good idea to stop and
pass out flyers. After introducing what I was doing,
the man immediately said, careful - they are both nurses.
Well, knowing that I now had a relevant audience, I went
into my usual dialogue about what I have been through and
what I believe to be so terribly wrong with the healthcare
system. I included that I really do not blame the
individual people, my issue is directed at those that
control and manipulate the system from the inside, while
having little frontline knowledge of what a lot of people
are going through.
Now, I am not
going to point a finger at all of what I got back but I will
say is that there were several comments that to me were not
appropriate. What I will quote is a comment made by
one of the nurses. She asked me what Lyme disease was,
then said she has heard of it, but doesn't really understand
anything about it.
Hello people
of Ontario.................this is what I have been living
for over 20 years of my life. Being told I am crazy,
that there must be a history of mental illness in my family,
that the pain is all in my head, that I must have a very low
tolerance to pain, that I am either a drug addict or a drug
pusher, or that I am trying to scam an insurance company for
a long-term disability claim. Yet, as I cycle through
Kinburn, Ontario, I have a registered nurse asking me what
Lyme disease is...........there must be something wrong with
me...............I actually give a shit about the people
that continue to suffer from this disease and I continue to
demand that our healthcare system wakes up and helps prevent
anyone else from having to live the life of hell that I and
my family have lived for over 21 years.
And finally,
ladies - nurses - please buy a book, go online, whatever, at
least show me the respect to find out about Lyme, so you may
help others that suffer with this debilitating disease.
*******************
Evening - I
didn't realize how emotional Ottawa would mean until I was
spinning into the city this afternoon. 5 weeks ago
today I met some incredibly high spirited people on
Parliament Hill, all closely affected by Lyme. As I
cycled only a few kilometers away from my goal, I stopped
and checked my Blackberry. To my surprise, I was met
with an email from Jessica Taliana from The Laser Clinic in
Toronto. Jessica has a 16 year old daughter with Lyme
that the Ontario medical denial machine makes travel to the
US for treatment. Jessica also included a donation of
$2,000 to Cycle For Lyme. For this I, 7 hours later,
remain speechless (and those who know me know that doesn't
happen often). Thank you so very much!
If you have
seen the video on the blog, you know my left knee pulled off
96 plus kilometers today to get me to the Hill. To be
able to complete 1,340 plus kilometers in 21 days is no
match to what my neighbour's 21-year-old-son Travis can do
in his sleep on his bike, but for a 47 year old geezer that
has slept for the better part of a decade, I impressed
myself today. And most importantly, I really have to
thank all my family, friends, and all others that helped me
get this far. It was a most rewarding day.
My
conversation with Jessica tonight focused on a lot of things
negative about our healthcare system. I think my
resolve is that we, and I mean a lot of we, need to continue
to push the message that Lyme is here and its not going
away. The truth is that too many doctors who genuinely
would like to treat patients for Lyme, live in fear of being
reprimanded for doing what those in authority don't want to
acknowledge - that Lyme is real and it is here to stay.
I believe
that a lot of us together can change this outcome.
And thank you
to all who keep emailing that I do not get a chance to
respond to - and the car horns and hands I see everyday - it
gives such a boost.
|
|
22
|
June
11
|
Ottawa
- again
|
66 / 1,466
|
0
|
1,346.1
|
|
Comment
|
Today was
just going to be so darn easy - an interview in the morning
and the rest of the day in Ottawa with my family.........no
biking........just another lazy day at Cycle For Lyme.
Maciek and I
drove to Gatineau, Quebec, to interview a one of the first
people to email me regarding Cycle For Lyme, only days after
I finally made the website public. Within a couple of
emails, I quickly realized that Trudy Belonoha and I (and
our spouses) had lived very parallel lives. She in the
Ottawa Region. Me in the Toronto Region. From
the most detailed accounting of our strengths to fight Lyme,
to the luck that we both share to have ended up with spouses
that continued (and continue) to support us through the
darkest and most frightening moments of ones life, the more
Trudy conveyed, the more I saw of myself.
Once a doctor
has told you that there is physically nothing wrong with you
and that you are effectively crazy, where do you go?
At one point
during the interview, Trudy conveyed an expression I have
only heard come from my own mouth. She talked about
having this thing living inside her body. Within
second I was flooded with memories and emotions that I have
been quite capable of suppressing and/or ignoring for many
years. However, I guess my brain will never allow me
to forget the cold indignant response of my doctor of 12
years (at the time) when I tried to explain to him that I
had this beast traveling around inside of me making me sick
all the time, and causing me joint and muscle pain,
migraines, constant fever, heart pain, pain in my sides,
constant sore throats, constant sinus irritation, itching,
pins and needles, eyes that literally ached, constant
ringing in my ears, and goodness knows how many other things
that don't need mentioning. My doctors response was to
literally start laughing at me and shaking his head, then
proceed to explain to me that this was just more proof that
I was mentally unstable and depressed. At one point,
he said that what I described was the craziest thing he had
ever been told. In saying this - by definition - my
doctor had confirmed to me that I was the craziest patient
he had ever had. That is defining moment that I will
always have to cherish.
The interview
with Trudy was powerful. To hear her speak of her
husband Bruce, was my wife, Heather in every sentence.
Although no one knows more than I what Lyme disease and I
have put Heather through, with every word out of Trudy's
mouth, all I had to do was substitute the word "Heather"
when I heard the word "Bruce" - and Trudy was telling me
about my wife's life with a person misdiagnosed and living
with (or slowly dying from) Lyme.
I understand
that as a nurse or a doctor that in order to survive, all
healthcare workers need to maintain an emotional distance
from their patients or else they will end up in padded rooms
themselves (and frankly, I know at least one that should).
I get that. But when you have a patient that for well
over a decade has been telling you, the doctor, about a set
of symptoms that were discovered over 30 years earlier and
that were discovered less than a 9 hour car ride from where
you live, then I am of the opinion that maybe, just maybe,
that as a doctor, you should take a few minutes out of your
busy day billing OHIP and do a little research to see if
maybe, just maybe, what the patient is describing has any
medical merit and that the patient may actually not be
crazy.
Trudy
Belonoha is at most 100 pounds with wet clothes, yet is one
of the strongest people I have ever met. She has done
what I was never even remotely capable of doing. She
was able to make her family doctor of many years understand
that there really is a beast living inside, and not only
does her doctor understand, he is doing what my doctor will
never be able to do - he cares. Although I have no
doubt that there are many doctors that do care, what I also
know is that too many are afraid to speak up for fear of the
consequences, given the war on doctors treating patients
with Lyme.
Heather and I
had one of the best talks that we have been able to have in
a long time today here in Ottawa. Heather has had to
do so much to provide the necessities while I have been on
the couch asleep for well over a decade. Heather has
had to go to work and maintain a smile on the outside, while
she has been crying on the inside. In November of
2010, I took Heather to see my doctor so that we could try
and find closure, as well as make him understand how
misdiagnosing has effected our lives. However, within
minutes, Heather got to see for herself what I had known for
years. That my doctor is a small person with little or
no respect for those that he is entrusted to "care" for and
that in the end, my doctor is simply in it for the money.
You see, a couple of days after the indignant visit, my
doctors office called to complain that the health card they
had on file for Heather was expired and that she had to
provide current information. Apparently, after what we
had discussed with my doctor - his priority was to try and
double bill for the visit. That is what almost 2
decades of misdiagnosing my life was worth. That is
what Heather has been through was worth.
The day I met
my wife, I became the richest man of all. Immensely
personal, yes, but sometimes things need to be said in order
to wake up those that are sleeping in the back rows.
And maybe, just maybe, a doctor will actually read this and
will learn something about all us crazy people with Lyme
disease.
|
|
23
|
June
12
|
Kemptville
|
67 / 1,533
|
63.2
|
1,409.3
|
|
Comment
|
In
consideration of safety
issues that were beyond my capability to correct, please be advised that I have had no choice but to
suspend Cycle For Lyme for a short period and return to my
home in Newmarket, Ontario.
At this
point, I intend to
resume and complete the balance of the ride
starting on June 30, 2011. Any changes to this date
will be posted when available.
In the
meantime, I would like to take this opportunity to thank all
that have supported and followed me on this journey.
The following
is some of the media
attention received.
|
|
Comment
|
After just
short of 100 hours, I just returned from my first cycle ride
since Sunday afternoon. It was only a 10.9 kilometer
ride tonight, but it was full-out and felt fantastic.
What I
didn't post on Sunday was that I was as close as one could
get from being killed by someone driving an out of control,
beige SUV, on a stretch of road north of Kemptville,
Ontario. After what I have to believe was an impaired
driver crossed in front of me hitting the shoulder and
pelting me with gravel, I avoided collision by crossing the
gravel shoulder (doing at least 25 km per hour) and finally
getting my Specialized stopped at the bottom of a rather
nasty country side-road ditch. I am still not sure how
I did it, but after being hit with stones in the legs,
chest, glasses and helmet, I ended up off the bike and on my
feet without so much as mark on me.
I completely
admit that I have been avoiding getting back on the bike.
It wasn't until tonight when I realized that it was only
minutes short of 100 hours that I decided that now was as
good a time as any. After living with Lyme for 2
decades, and finally getting a life back that I am capable
of doing Cycle For Lyme, I simply do not want to lose
my life at the hand of some incompetent idiot that was
likely driving drunk as a skunk on a Sunday afternoon.
We go through life taking to many things for granted -
something any person with Lyme or their family members know
all to well. I didn't realize until tonight what sort
of denial I have been living for the last few days - telling
myself and all those around me that Sunday was no big deal.
After 21 years of suffering, Sunday was a huge deal - and
frankly, I am glad that I feel this way.
Tonight
confirms what my last post says, this is just a temporary
setback, I have already arranged for a new crew that I am
positive will take great care of me. The
schedule for completing Cycle For Lyme is currently as
posted below and if there are any changes, will be changed
accordingly.
|
|
24
|
July
1
|
Kemptville
to Brockville
|
60 / 1,593
|
69.0
|
1,478.3
|
|
Comment
|
Happy
Canada Day!!
I would like
to say that my first day
back on the road
was an enthusiastic one, but after two full weeks of Lyme
symptoms, yes it is back and doing well inside me, I ended
up a rather crabby old man today. Hours later, I am in
pain, but unfortunately not from riding. What I will
say is that it is truly incredible to be able after over
twenty years, to precisely distinguish between what is an
authentic physical Cycle For Lyme pain against that which
comes from Borrelia. I said this a couple of weeks
ago, and I will repeat it again. If I could just
transfer what I feel today for 24 hours to a doctor so he or
she could understand what reality we Lyme sufferers live in,
it would be a great accomplishment. This brings me
back to what a doctor once told me about what my real
problem was - he said that it was clear that I had a low
tolerance to pain - in other words - I was a whiney suck.
If I could transfer for an hour what sucky pain inside me
now, what a difference it would make to the many who feel
what I feel right now.
The ride down
County Road 44 from Kemptville is a beautiful one. As
much as my brain was coping with, it went quite quickly.
And while highway 2 from Johnstown to Brockville is a treat
in a car, it is simply fantastic on a bicycle. We have
a country that we blast across on highways such as the 401,
and we miss so very much along the way. Despite what I
have gone through for the past two decades, I have seen much
of what this country has to offer, yet undertaking Cycle For
Lyme has reinforced what I often forget.....that we simply
do not adequately appreciate what we have on our doorstep.
In dealing
with having Lyme back for two weeks now, when not sleeping,
I made a point to make some calls. One thing I learnt
not only surprised me, but rather made me very upset.
I discovered that the only research being done to determine
tick and/or Borrelia infestation in Ontario is being done in
the Brockville / Thousand Island area. As I sit in
Brockville writing this blog, I realize how excellent this
is for the people living in the Brockville area (like the
locals don't already know Lyme is here) - yet how
unfortunate it is for the rest of the residence of this
province. How can politicians and/or bureaucrats, the
folks that ultimately determine our health make informed
decisions about such an epidemic of such significant
proportions, when not a dime is being spent to properly
study the extent of how Lyme infected ticks have infiltrated
Ontario. I can be quite often be heard privately using
the term "let the people die" as a half hearted way of
dealing what I have been through, but the reality is that my
humour is all too serious, and all too real.
I went on the
Toronto Star's article archive last week and found an
article from 1989 - the year that I was bit and became
infected with Borrelia. The article point blank stated
that if we (our government and healthcare providers) didn't
wake up and accept that Lyme is here to stay, Lyme had the
potential to become an epidemic in the next 10 to 20 years.
Well Hello Ontario - 22 years later those who ignores those
words need to be both ashamed and accountable. How our
government can continue to cling to the position that we
only just learnt about Lyme a couple of years ago need to
listen close - we have proof that you have been in denial
for a long time - STOP THE RHETORIC AND DO SOMETHING ABOUT
LYME BEFORE MORE OF US BECOME INFECTED.
As I told him
briefly what I was doing, I handed a flyer to a man today.
He had a good working knowledge of Lyme. He response
was only two simple words, "Thank you". Two of the
most generous words I could ever hear.
Don't blame
me - I told you up top that I was a rather crabby old man
today.
|
|
25
|
July
2
|
Brockville
to Gananoque
|
50 / 1,643
|
51.3
|
1,529.6
|
|
Comment
|
Today was
a special day for several reasons. I tipped the 1,500
kilometer mart. I had originally figured that as long
as I did 1,000 km, Cycle For Lyme would in my mind be a
success. I further figured that 1,500 kilometers would
exceed my own expectations. Given that I am dealing
will Lyme daily now, I have well exceeded those expectations
and then some. To land at the foot of Queens Park this
time next week, will be something that even a year ago, I
never would have believed that I could accomplish.
I cycled
about 38 km to the home of Betty and Bruce Craig today.
I first met them both in Ottawa in May. Betty has Lyme and
is just recently getting treatment. Bruce and Betty
not only welcomed the three of us into their home, they fed
us a wonderful meal and gave cycle For Lyme a generous
donation that is very much appreciated. As if that was
not enough, they even offered that we can park the truck and
trailer in there driveway for the night. Thank you
both so very much!
As if dealing
with Lyme disease alone isn't enough, it was wonderful to
hear all how active Betty and Bruce have been in raising
awareness about Lyme in their community. It
continually amazes me that Lyme awareness has ended up being
a task that has to be taken on by the victims of this
disease, and how community after community is being
neglected by local departments of health. Having
traveled from town to town through the Cycle For Lyme route,
what people like Betty and Bruce are doing is not only
special, it is a vital necessity that for the most part goes
without praise. So if you see or know the Craig's, thank
them for making your community a safer place to live.
I was quite
taken back by the response given to the flyers I handed out
today. Virtually every Cycle For Lyme flyer went to
someone who was either well informed about Lyme, someone who
had an family member that had Lyme, and one man that I
missed by a couple of minutes, told Heather and Gavin that
he himself had dealt with Lyme. On the one hand, this
was an excellent day for me to hear all this knowledge about
Lyme, yet on the other hand it just further goes to show
that Lyme disease is not an isolated and/or rare infection
to obtain. The fact is that the area I cycle today
from Brockville to Gananogue is only a three hour drive from
where Heather, Gavin, and I live in Newmarket, Ontario.
In other words, on any given weekend, we could drive to this
area with our RV and unwittingly end up getting bitten by an
infected tick - so why is it acceptable that the majority of
doctors in the GTA, or anywhere else in Ontario don't even
have the basics about Lyme. The Ministry of Health
knows Lyme is here. Health Canada knows Lyme is here.
The Ministry of Natural Resources has know for 20 years that
Lyme is here - so why are the doctors that take care of our
health the only ones out of the loop.
My Lyme pain
was bad this afternoon, but at the same time I find it
inspiring. Although a little on the whiney side this
evening, I would have to say that it is pain that makes
Cycle For Lyme even more real and more powerful. After
not knowing what was wrong with me for 19 years, talking to
people that suffer with Lyme as I have is so helpful.
Now that I am experiencing the return of Lyme, hearing what
Betty Craig is going through, the meeting of the minds as it
were, is the icing on the cake. Hearing what Betty has
to say is such an effective way of putting what is important
into perspective. That I have the opportunity to do
what I am doing today - simply perfect.
|
|
26
|
July
3
|
Gananoque
to Bath
|
50 / 1,693
|
56.7
|
1,586.3
|
|
Comment
|
When I
originally contracted Lyme in 1989, it took years to develop
all the various symptoms that ended up consuming my
existence. That I was misdiagnosed for such an
extended period of time, 19 years, I never had the
perspective to compare what I was going through to a
knowledge base of the disease itself. The first time
around, I did not have the ability to understand why my body
was experiencing such horrific pain. What I went
through for close to 2 decades was the lack of the most
basic knowledge of what was wrong inside me without ever
being able to have anyone explain why my life was being
sucked out of me in such a painful manner.
19 days ago,
my Lyme came back with a vengeance that has really made me
realize what I was forced to tolerate for such a ridiculous
period of time. The surging pain that has been passing
through various areas of my body since I started to ride
again on Friday is simply unbelievable. To be able to
consciously analyze how I have slipped from "living mode"
back to the horrible feeling of "survival mode" has been the
most debilitating part of the last couple of weeks.
What finally hit me yesterday was the realization that the
joy that Cycle For Lyme has been from the start is being
drained away by the desire to simply get it over with so I
can curl up into a ball and sleep. I have in such a
short span of time gone from wanting to be out here to
wanting to go hide.
This is the
demoralizing beast that Lyme disease is, you go from
enjoying all that life is to merely trying to get through
the day without any unbearable symptoms. What fixated
itself in my head today was an experience I had with a
totally incompetent and completely Lyme illiterate
"specialist" doctor. After less than 20 minutes
speaking with me, and without any real knowledge of my
medical background, this doctor proceeded to tell me that my
problem was that I had IBS, Irritable Bowel Syndrome.
Now I am not trying to make a total mockery of the man, but
really, how does a body plagued with muscle and joint pain,
constant fewer, relentless migraines, etc, all point to an
irritation in my bowels. This is the comedy that is
western medicine - ignore everything the patient says and
then give him a pill to mask one of the symptoms.
There is a
reason our doctors that can't see the forest for the trees,
because they are taught to think that forests do not exist.
Our healthcare system is designed to treat each individual
symptom with a pill to make the "symptom" go away, without a
second thought about actually figuring out what is wrong
with the body for it to be creating the "symptom" in the
first place. This medical experience that I describe
is something that occurred to me dozens of times in 19
years. Time after time, my doctor would pick and focus
on one tree while ignoring everything else I said, so that
he could put my problems into a little pill. Until our
healthcare system wakes up to the fact that the human body
can react in multiple ways to something like a bacterial
infection, Lyme disease will never hit a doctor's radar
screen. Until our healthcare system takes a step back and
acknowledges that a serious flaw exists in its design, we
will continue to be grossly over medicated with pills that
never cure the illness.
In the span
of less than 30 minutes while in Kingston, I drastically
altered the planned Cycle For Lyme route. Rather than
staying on highway 2 west from Kingston, I switched to the
more scenic route called either Ontario King's Highway 33,
or simply, the Loyalist Parkway. This road and the
towns and villages that I cycled through are another
reminder of all that we miss while getting to our
destination at 120 kilometers an hour on the 401. What
I understand as I write this is that this is an area that
Heather, Gavin, and I will have to come back to see properly
when not rushed and when I am living again, not just
surviving as I am today.
|
|
27
|
July
4
|
Bath
to Trenton
|
60 / 1,753
|
67.6
|
1,653.9
|
|
Comment
|
Written July
6th.
My body
absorbed the first 35 of my 67 kilometers without much
difficulty. However, after a long sleep that didn't
improve my well-being, the last 32 kilometers to Trenton
were without a doubt the most painful I have had to endure.
As stressful as cycling in constant pain was, I was glad that
I could continue. I worked fulltime for years with this
type of
pain - yet when I described it to my
doctor, he told me we all get aches and pains and that I
should just get over it. I figure that he said this to me at
least 6 or 7 years before I found out what I was going
through was Lyme disease. What I wonder today is how
many thousands have been in the same place as I, leaving
with a bacterial infection that the Canadian
healthcare system ignores because it is capable of treating.
The Prince
Edward County ferry ride that joins highway 33, the Loyalist
Parkway, is as scenic as it gets. After
getting off the ferry, I ended up speaking to a couple
working in their garden. They were well aware of the
Lyme problem in the area and had many times had to remove ticks from
their dog. They said that deer were a problem for them
because the previous owner used to put salt blocks out,
encouraging the deer into their back yard.
I then cycled
about 8 kilometers with a man to Picton. He was a
wealth of information about Lyme. Although from
Toronto, not only did he spent a lot of time in the Picton
area, he said that every summer he sailed the 1000 Islands
area, where he was well aware that ticks were considered an
epidemic. He told me that, locally, the health
department has people in the area that actually go around
the 1000 Island area providing information about the
consequences of ticks as well as how to remove a tick and
what to do if bitten.
What I don't understand is that since the 1000 Islands area
is not more than 2 or 3 hours away from the largest city in
Canada, why has the same healthcare
system not ensured that the traveling public and all doctors
have this information as well.
After
stopping and sleeping in Wellington, Ontario, I woke up with
massive pain throughout my body. I didn't think I had,
but I now realize that my body had forgotten the worst that
Lyme disease has to offer. Not only the pain, but the
confusion, the trouble standing without hanging on to
something, and the inability to speak fluently. It was
over an hour before I was coherent again. These are
some of the severe issues that I had for well over a decade
that I have not had in almost 2 years.
In the
afternoon while explaining what I was doing to a woman, she
told me about a good friend that her husband had hunted with
for decades. He had contracted Lyme only 3 years
earlier and that along with all the physical issues, his
memory was almost gone. She said that in order to help
him remember who she was, she would have to help him
remember how he had always hunted with her husband.
From my perspective - given that this was only three years
ago, this is yet another life needlessly destroyed. If
this man had been properly diagnosed in a timely manner,
instead of being pushed through the system as Borrelia
invaded his body, he would likely have made a full recovery.
How is it that I only spoke to a couple of people about
Lyme, yet I could find a story as terrible as this.
How is it that only a few weeks ago I interviewed a woman
who told me that when she went to an infectious disease
doctor in the Ottawa area recently, the doctor told her that
there was no Lyme disease in Canada, and that it was an
American problem.
I struggled
through and was able to cycle another 32 kilometers to
Trenton.
|
|
28
|
July
5
|
Trenton
to Colbourg
|
52 / 1,805
|
54.4
|
1,708.3
|
|
Comment
|
Written July
6th
Yesterday was
the worst day yet for me. I don't recall the majority
of the cycling, as I literally just went through the
motions. In the end, I cycled 54.4 kilometers and
proceeded to sleep on and off the rest of the day.
Heather said it best when she told me last night that I
haven't smiled for days and that there is nothing positive
coming from me. Given that from Trenton to Cobourg, I
didn't give out a single Cycle For Lyme flyer or speak to
anyone about Lyme disease, I can not disagree. What I
will say is that this is what being physically beaten into
submission by a relentless bacterial infection does.
It never allows a minute of piece and there is no way to
sit, stand, or lay down that will give any sort of relief to
the pain. In many respects, on days like yesterday, it
is no wonder that our healthcare system has turned its back
on those with Lyme - maybe they actually really do know what
we with Lyme go through, but given that there is no
treatment for the disease, it is simply easier to turn a
blind eye and deny that so many people are going through
such a horrible kind of life. Maybe it helps them
sleep better at night to simply keep telling us it is all in
our heads.
The good news
is that since sleeping the majority of the last 14 hours, I
am in better shape this Wednesday morning than I have been
in days. Hopefully it will last.
|
|
29
|
July
6
|
Colbourg
to Bowmanville
|
45 / 1,850
|
46.5
|
1,754.8
|
|
Comment
|
The reality
is that this was the first day in many where I wasn't in
constant pain throughout the entire days ride. For the
most part all I had to deal with was the fatigue.
Although cutting down daily, I still completed 46
kilometers.
I had the
pleasure of meeting and speaking with a retired veterinarian
from Port Hope. As I have said many times, when I
first found out I had Lyme, the way I found out the real
scoop about this disease was not by seeing a doctor, but by
speaking to veterinarians. It is a sad statement when
doctors know so little about a disease that is effecting the
lives of thousands of Canadians, yet all of the four vets
that I spoke to could have easily spoken on the subject for
hours. When it comes to Lyme disease, our pets get far
better healthcare than we do.
Speaking to
this veterinarian reminded me of something I had not thought
of for a while. It is not just Lyme that is being
misdiagnosed. Diseases such as Batonella, Babesiosis,
Rocky Mountain fever, and Tularemia are also commonly
misdiagnosed in humans. From my perspective, this is
yet another problematic dysfunction of our healthcare
providers that continues to fall through the cracks. I
look at my own doctor and his lack of foresight to even
attempt to look into an area that was out of his comfort
zone. Had my doctor even remotely said to himself that
my collection of symptoms maybe the result of an actual
illness and not simply a product of my imagination or
depression (what I call the doctors easy way out), he would
have at least sent me to some form of specialist rather than
believe that he was the expert - to which he most certainly
was not. Given the general state of accountability in
our healthcare system, our self-regulating and
self-monitoring doctors will never open this can of
accountability worms. No doctor is going to sit on a
committee and properly punish a fellow doctor unless a
ridiculous and outrageous act of negligence has occurred.
All that will ever happen is a slight tap on the wrist.
The bottom
line is that until we change our healthcare providers
attitude to align to that of a basic veterinarian skill set
where you don't ignore the signs the dog is telling you, we
will never have a healthcare system based on putting what
the patient is going through first, rather than stroking the
ego of the doctor that gets paid whether the patient
receives good treatment or not. If your vet screws up,
he either doesn't get paid or there is recourse.
However, doctors in this country get to feed from the trough
whether the patient lives or dies. What really scares
the hell out of me is the entire E-health situation.
Based on what I have been through with the Canadian
healthcare system, there is literally not a hope in hell
that I will ever go into a doctors office or an emergency
room for the rest of my life, and not be hindered by the
incompetence of what was written by my family doctor of over
15 years. His incompetent misdiagnosis of the serious
bacterial infection that I had for 19 years will follow me
where ever I go. This is something that E-health will
only make worse - misdiagnosed Canadians will never get a
second opinion, they will only get what the previous doctor
said. No doctor is going to shoot himself in the foot
by going against the opinion of another member of the same
club. E-health is for the protection of doctors - not
for the better treatment of patients as the doctors
associations are currently spewing through the media.
|
|
30
|
July
7
|
Bowmanville to
Pickering
|
32 / 1,882
|
35.5
|
1,790.3
|
|
Comment
|
Today was the
first day that I road when I wasn't having significant Lyme
symptoms. It was also the first day that I looked
around and paying attention again to what passed me by. I cycled
35.5 km today like I haven't cycled in weeks. More
than ever, today
made me more cognizant of just how much people with Lyme disease miss
while coping with what this disease dishes out. The
simple things that we always take for granted are pushed
aside as the battle with Lyme rages on.
The fatigue
is still hanging around and I ended up sleeping in the
afternoon for more hours than I spent cycled in the morning.
And along with the fatigue came a high fever and nausea.
|
|
31
|
July
8
|
Pickering
to Scarborough
|
20 / 1,902
|
22.3
|
1,812.6
|
|
Comment
|
It was
only 22 km to cycle from Pickering to Scarborough today. At
this point, I have cycled approximately 1,812 kilometers and
have only about 14 kilometers to go before reaching
Queen's Park. Despite
the agony of the last few weeks, I figure it is fitting that
the Borrelia would return to invade the 6 plus months of
Lyme disease freedom that I have enjoyed.
Today along
Kingston Road was rough on the bike and my body, yet I
enjoyed ever second of it - something I have not been able
to say for many days. Knowing that I defied all
odds and cycled from Queen's Park to Leamington to Sarnia,
to Owen Sound, to Sudbury, to North Bay, to Ottawa, to
Kingston, and back to Toronto today is something that I can
marvel.
What I found along the way is even
more of a marvel. Everywhere I went, I found people
that were either directly effected by Lyme disease or who
knew someone who was. Yet, for well over a year now I
have been repeatedly told by Ministry of Health and Long Term Care
officials that Lyme disease is rare, isolated, and even
non-existent in Canada. That our healthcare system can
continue to deny the wealth of knowledge that is out there
and all those who suffer with the symptoms is completely
irresponsible.
How it is
that one person can ride a bicycle around a route that is
less than 2,000 kilometers in length and find so many people
with Lyme, yet in 2008, the Ministry of Health could have
the audacity to claim that only 117 people contracted the
disease?
How many
more Canadians have to be infected with Lyme and
misdiagnosed before the outrageous mistakes that are being
made today by our healthcare providers get corrected?
How many
people have to die from Lyme before we care?
|
|
32
|
July
9
|
Scarborough
to Queens
Park, Toronto
|
15 / 1,917
|
16.2
|
1,828.8
|
|
Comment
|
The final
day!
In 32 days on
the road, I cycled 30 days. In those 30 days, I cycled
a total of 1,828.8 kilometers for an average of 61
kilometers per day. Along the way I met a lot of
people who knew a lot about Lyme. Along the way, I
spoke in several school to students who unfortunately knew
very little about a disease that if misdiagnosed for as few
as 4 months, can cause the debilitating, and in Canada, the
medically untreatable disease known as Chronic Lyme Disease.
The greatest
moments of Cycle For Lyme are too numerous to list.
From a simple wave and blow of the horn along the road to an
emergency doctor in Deep River who made a huge impact by
professionally determining what went wrong inside my left
knee, the kindness was and is much appreciated. To all
that provided donations, I thank you for reducing the
financial load that undertaking Cycle For Lyme has created.
As someone
who hasn't been able to work fulltime for over a decade and
who was bedridden for weeks at a time only 2 short years
ago, I continue to find myself surprised by how far I
have come and what I have accomplished. In simple
words, the thought that I was told that I needed open heart
surgery and that I may only have a few months to live
because of a faulty heart valve is just icing on the cake of
how out of touch the Canadian healthcare system is with
respect to Lyme Disease.
Where Cycle
For Lyme goes from here is yet to be determined. All
Lyme disease groups from east to west need to start working
together, rather than on their own, in order to have a
solid, collective voice to make the Canadian healthcare
system finally accept that there are thousands of Canadians
infected by Borrleia burgdorferi.
What Cycle
For Lyme has proven is that in every part of the province of
Ontario, there are real people suffering with real symptoms
of a disease that few doctors in the province know anything
about. It continues to boggle my mind to think that
Canadians have to travel to the United States and pay for
treatment to try and combat a disease that has been within a
couple of hours of the Canadian border for 35 years.
We are not a third world country, yet with Lyme disease, we
may as well be.
To all that
have supported me, Heather, Gavin, my family, and all others
in the many ways to make Cycle For Lyme a success, I thank
you.
I will stop
here......I have to go for a ride on my bicycle......just
because I can.
|
To find out more,
- view the Let's Target Lyme
brochure,
Click Here.
- from the
Chief Medical Officer of Health,
Click Here.
- from the
Ministry of Health and
Long-Term Care,
Click Here.
To Learn
more about
Cycle for
Lyme Founder,
James Christie's,
21-year battle with Lyme Disease, please visit,
www.livingthelymelife.com
|
CycleForLyme.blogspot.com
