Monday, September 24, 2012

Presenting to the Rotary Club

Jessica Bell-Taliana, Bryon Wilfert and Marlene Spies
Jess and I just before dinner with
Bryon Wilfert, former MP (member of Parliament), who was pro-active about Lyme disease. He showed us newsletters he published in 2009 and 2010, about Lyme disease. These were distributed to 5000 houses in the Richmond Hill area. Click to read the two relevant newsletters online: Sept. 2009 and May 2010

Last night, there were about 2 dozen people actively listening and some taking notes, asking questions and learning more about Lyme.

They too are puzzled about the lack of access to treatment and diagnosis. They made some suggestions about going forward, which we'll follow up.

We're very grateful for the opportunity! Thanks, Rotary Club of Richmond Hill and Josephine from the Richmond Hill Lyme support group for making it all possible.
(See for Josephine's site)

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Wednesday, September 19, 2012

Success in Brampton with Dr. Murakami

Almost midnight -- a very exciting day, informative and busy. What an honour to have Dr. Murakami in Brampton to share information and answer questions!

I met him at Yorkdale this afternoon and we drove back to Brampton - catching every traffic light red! But there was no hurry or rush and we could chat. The much-needed rain made traffic slow, of course.

Then it was time to set up for the information session. When we arrived at 6 pm, there were already people and more coming. Introductions in the parking lot. One couple came since I spoke to their daughter while renewing my driver's license, and mentioned Lyme disease. It is no longer a rare disease.

At last count there were 77 people attending the session tonight. I didn't get to speak to everyone, of course, but there were people from Whitby, Markham, Aurora, Hamilton, Oshawa, Richmond Hill, Mississauga - and at least one couple from three hours away. People are hungry for information.

A patient, Steve, told his story. His health (and sight) improved greatly with treatment.

When dr. M asked how many people there had Lyme or a relative with Lyme, about 75% put up their hands. He said previous groups were about 50% or 60% - this was the highest yet he has seen. 

There has to be a tipping point, sometime soon, with so many people pushing for information and education, and of course asking for answers and accountability.

The next information session with dr. Murakami is in Kingston on September 20. A session is being arranged for Ottawa, but the details are not firm yet. Please keep watching the LDAO, this blog, or Facebook for details as soon as we have them.

Bedtime now - thank you to all my friends for your help, for making sandwiches and putting out tables, bringing fruit, being there -- you are my strength and support. Without you, things would have been very different. I love you.

Monday, September 17, 2012

Report about the fair

My goodness, what a week! Exciting, busy, upsetting when talking to people who are sick and suffering without the luxury of a doctor to help or support them. A whole host of emotions worked through this week.

The Brampton Fall Fair started on Thursday and we had a Lyme booth there. I am also the Photography convenor, so Thursday was an interesting, long and busy day! But we managed to do it all. We didn't man the Lyme booth that evening, though.
A small part of the hall while judging is going on
 Friday morning dear hubby and Joe met at the fairgrounds to finish setting up the booth and tie the banners properly, since short stuff here didn't do a good enough job, haha! Then it started raining, and raining, until a virtual swamp appeared in the grass. We need the rain so no complaints. Just sloshing!

Arno holding the new banner - notice the water in the grass!
Friday afternoon I joined them and we stayed there until it became too cold and dark. Teenagers were out to enjoy the Midway. Rouxline joined us in the booth. I'm so very grateful to friends who lend their time to help reach out to others! One of the best contacts I made was to talk to a man from the Peel Police, who goes to schools to do safety talks. He is going to arrange a session at a local high school in the spring.

Saturday dawned bright and clear. Linda and David arrived and started talking to the crowds. We collected scores of signatures on the petition and handed out lots of brochures, answered questions and felt it was a much needed program to offer to people. We never spoke to large groups, but always to family units, couples or individuals. Most were grateful for the information.

Lyme Mobile and people listening, looking at banners, etc.
With Dave and Linda
 On Sunday, another lovely day, Jess came out with Mikki to join us. Again we spoke to many different people. One lady heard me on AM740 at some time talking to Dale Goldhawk - it was too funny! She was planning to come to hear Dr. Ernie Murakami in Brampton on Tuesday, September 18th anyway.

It was heartbreaking to hear some stories. One mother found a tick on her 7-year old's ear this summer. She took him to one doctor who said not to worry. Then a red circle developed and she took him back. A different doctor was on call and gave her 3 weeks of antibiotics. The boy's father was a Scout, and there was a warning posted on the campground where they were, so they were on the lookout.
What a difference education and information can make!

Arno, Jess and Joe with me under the CanLyme banner
At 4:00 pm the Homecraft prize giving session was held in the hall before we started breaking down. Lots of happy winners receiving their gift cards or certificates.
Katelyn had the most points in the Junior section
More winner pictures can be seen HERE if anyone is interested.

 Now - got to run and get a lot of stuff done, then prepare for Dr. Murakami tomorrow. Scroll down a bit on this blog if you want to see who he is. A hero in many eyes, for sure, and we are lucky enough to have him in Brampton, at Heart Lake United Church on Tuesday, September 18 to talk and answer questions about Lyme Disease!

Saturday, September 15, 2012

Brampton fair

Going wild at the fair with the Lyme booth! Lots of people stopping to talk and get brochures, sign the petition and such. Awareness being risen in Brampton for sure!
Picture of Dave, Linda and I.

People are thanking us for the time we give. But we have to, right?
I'm so grateful to everyone for their time.

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Friday, September 14, 2012

Lyme booth at Brampton Fall Fair to Sunday

Things are really moving around the Lyme Front this month!
I've just received an outdoor banner with my friend Fi's design at the top. She's in South Africa, so we have international designers helping with this! I had ordered it some weeks ago but it took a while to be delivered and I was getting antsy .... Hopefully it can help with our displays, depending on where we are.

Check it out on the left - what do you think?

It will be set up today as part of our booth at the Brampton Fall Fair which is on until Sunday. If you want to join us, you can buy passes for only $20 per person, which will give you access all day, any day, until Sunday. You can come and go as you like with that.

Otherwise, a one-day admission is $10 per adult, $8 per student or senior, and children under 12 are $2 each.

There are all sorts of events going on during the fair. The Ontario Falcon Centre is there again with their birds of Prey, for instance. If you want to see some pictures from last year, here they are CLICK

There are car races, horse shows, a Gymkhana, Welsh ponies, vintage car displays, a baby show on Sunday, rabbits, pigeons and horses, and a lot of baby chicks which children usually love to watch. Below is a PDF schedule of events for the fair, if you want to see the variety of items being presented. And don't forget to stop by the halls! Play a bit of fun on the Penny Sale, and in the Homecraft building, see the display of Antiques, baking, canning, arts and crafts, children's handwork, needlework, photography, 4-H displays --- maybe next year you or your children would like to enter something!

Brampton Fair Schedule

Come on out and visit a little! Stop by the Midway or let the kids play at the booths to win a stuffed toy while you browse the booths.

At our Lyme tent, we have volunteers who will be chatting and answering questions, handing out brochures and sharing information. I'm so grateful to people who are coming to help with that, reaching out to the community. Thank you, my friends.

Dr. Ernie Murakami has arrived in Ontario and will do his first presentation at Fort Erie tonight. He will answer questions about Lyme Disease, the treatment and care and is hoping to help people find answers.
He will be in Brampton on Tuesday evening. The list of lectures and venues up to Kingston and back down to Toronto can be found HERE. There is a possibility that a lecture might be added for Ottawa, if a venue can be found.

All very exciting. Joe is back from the Outdoor Farm Show. See the previous two entries on this blog about that event. He says it went incredibly well and we are already booked again for next year! We'll talk about helpers as soon as the excitement of September has died down a bit.

We CAN make a difference and we CAN help people get the information they need. The petition forms are steadily arriving and adding to the groundswell.

Let's go!

Tuesday, September 11, 2012

Farm show: Thanks to Salford

Second post from the show: we are busy! Lots of people asking questions, taking brochures, signing the petition, picking up the info about dr. Murakami's talks.

Carolyn is doing a wonderful job, talking to people as they pass by.

This was all made possible through the kindness of Salford, sharing their space with us. They made it possible to literally save lives.

Case in point: I've just talked to Roy - and the old story surfaces. No diagnosis, no treatment, even though he has a Lyme test from California - just steadily declining health and quality of life. Five years of it.

Twice a day Salford does Safety demonstrations, and allows Joe to talk about Lyme Disease along with their presentation. They clearly support this as very important protection for farmers.

Salford's website is

By the way, I made T-shirts for Joe, saying 'ask me about Lyme Disease'. He says people want to buy his off him! I think he likes the attention ...

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Farm show wow!

The little Lyme Mobile drew attention where it was parked!
One of the many displays put on with humour
Posting from the Outdoor Farm Show - and it took me about an hour to pick up my jaw from the ground ... This is huge. Immense. Not even the CNE in Toronto boggled my mind like this. People, machinery, displays, mums in all colours, food, and everything so orderly and well planned.

In the hour or so since Carolyn and I arrived, we've collected lots of signatures on the petition, and spoke with many.

Several people reported bites, showed their red mark and I took pictures.

All thanked us for our time. Or said keep on doing what you are doing. This is important.

So grateful for the opportunity!

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Monday, September 10, 2012

Lyme Mobile at the Outdoor Farm Show

 {Sorry for two posts in one day .... the Invisible Disease list was compiled before so just posted it now. }

This is going to be one big, busy week! We hope to reach those who are so very vulnerable to the bite of ticks, those who look after our welfare: The Farmers.

The Lyme Mobile will be at the Outdoor Farm Show in Woodstock, where last year 42,600 visitors came through! Friend Joe will man the three days, but I'm planning to join him at least for one day.
Joe and I with the Lyme Mobile earlier this year

Joe will also do Safety Talks about Lyme disease two or three times a day during the Show. 
We've got several copies of the Petition available, hoping to collect even more signatures. 
We've got CanLyme brochures and note cards, we've got information about Dr. Ernie Murakami's information talks this week and until the end of  September ---- we hope that people will learn something about Lyme Disease.

The gift of time from people who have become my family -- if this disease has done one thing, it has created connections to people I might never have met. Or maybe have met but not grown to be like family. I now have a wealth of siblings, parents, uncles and aunts, cousins, nephews and nieces -- all connected through the disease in my blood.

30 things about my invisible disease you may not know

1. The illness I live with is: Chronic Lyme Disease
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Allowing other people to help me.
5. Most people assume: That I'm "feeling better" if I'm up and out.
6. The hardest part about mornings are: Getting up - where I was always eager to get going.
7. My favorite medical TV show: Used to be 'House', but the disease made it difficult to follow the plot and to concentrate.
8. A gadget I couldn’t live without is: E-reader
9. The hardest part about nights are: Switching between insomnia or sleeping like a dead person.
10. Each day I take 54 pills, supplements & vitamins.
11. Regarding alternative treatments I: Believe that research is needed, and am grateful for the support I get from my doctors and a Chinese healer who know about each other and the items I'm taking to help support my body.
12. If I had to choose between an invisible illness or visible I would choose: Visible illness - when I was in a wheelchair a few times in 2011, people immediately became more courteous and helpful. And my family had fun popping wheelies and making me laugh!
13. Regarding working and career: It was hard to admit that I could no longer do what I used to be able to do quickly and efficiently.
14. People would be surprised to know: That every little thing takes an effort, to get started, to get going, to get up and out.
15. The hardest thing to accept about my new reality has been: I have always wanted to donate my organs, since age 12. Now the doctor told me I can never do that. For some reason that upset me more than even the knowledge that I also have co-infections called Babesia and Bartonella, plus another (as yet) unnamed infection.
16. Something I never thought I could do with my illness that I did was: Drive alone across highway 401 in morning rush hour traffic to a hospital for drug allergy tests.
17. The commercials about my illness: Are not yet enough to protect others from contracting Lyme Disease.
18. Something I really miss doing since I was diagnosed is: Planning events for my friends and family.
19. It was really hard to have to give up: Cheese and bread!
20. A new hobby I have taken up since my diagnosis is: Educating others about Lyme disease, which includes public speaking. Is that a hobby? It takes up enough time and energy - with the help of faithful friends!
21. If I could have one week of feeling normal again I would: Go on a SCUBA liveaboard in Fiji or somewhere. (see Bucket list tab above)
22. My illness has taught me: That one person's idea or voice CAN make a difference.
23. Want to know a secret? One thing people say that gets under my skin is: "It might be a mental block or problem you have that is making you sick"
24. But I love it when people: Understand that it is not about my being sick, but about everyone else being vulnerable without more information.
25. My favorite motto, scripture, quote that gets me through tough times is: We are not alone; we live in God's world.
26. When someone is diagnosed I’d like to tell them: I'm here to help if you are scared or have questions. If I don't know, I'll help you find out.
27. Something that has surprised me about living with this illness is: How eager people are to know more, to understand and to be able to help.
28. The nicest thing someone did for me when I wasn’t feeling well was: Believe me.
29. I’m involved with Invisible Illness Week because: I'm morally compelled to share what I have had to learn about this disease, to protect my own sanity and the health of those I care about, and the ones that are dear to them.
30. The fact that you read this list makes me feel: Hopeful that we are getting more information, awareness and knowledge out there - and maybe, someday soon, we can even get treated in our own country without going bankrupt in the process! Better yet, more information will prevent people getting to the state where so many of us find ourselves, dealing with long-term or chronic Lyme Disease.

Saturday, September 01, 2012

We had another table to give information about Lyme Disease. This time, however, it was disappointing. We found the arrangements for the event badly communicated, very few signs, no information of where we'll be setting up (grass or cement), and nobody in the park apparently aware of what was going on or where. Sue came to help out, and Arno brought extra water. He and Joe enjoyed some beer and wings.

When the wind came up and kept blowing our tent and the flyers every which way, we took it down and just sat in the open. Very few people came to ask information, or even make eye contact. They were clearly there to eat and drink and not listen to us trying to talk over the music!  Most didn't seem to notice the beauty of the moon raising - the second one in the same month, so a Blue Moon. But it was pink when I took pictures.

 There was some guy doing a Waldo impression and pretending to be funny, but we thought he was not at all funny, bad taste in jokes (among others, trying to make fun of the shooting at the Batman movie) and then he wondered why nobody was laughing! 

However, it was not all bad, not by a long shot. Spending time with friends who give so generously of their time in the quest to spread awareness of Lyme Disease, and to support me in the process, never is a waste of time.

We made two fabulous contacts -- one an MP who gave permission that we could drop by the office to leave CanLyme brochures, flyers about Dr. Murakami coming to do a series of 6 talks at different venues, and copies of the petition to ask for a National Lyme Disease strategy!

That was not all. Another girl saw the CanLyme banner and came over to talk, saying they want to start a wellness centre at a clinic to also be able to help and support people with Lyme Disease. I offered that Jess and I will go, of course. What a wonderful opportunity!

Oh yes and I fell. Threw the rough tarmac with a person. No idea how I did it, or how I landed. Right hand has a gouge and is swollen, left knee looks like a blue moon with the deep bruise blooming over it, and the right foot inside is scraped. Back must have been wrenched. But it could have been worse. Nothing broken!

  • Updated flyer with all six places where Dr. Murakami will be speaking (Fort Erie, Burlington, London, Brampton, Kingston, Toronto) in September 2012. Please post where you can, or give to contacts you might have at pharmacies, doctor's office or other health care workers. Of course people with Lyme or caring for someone who has Lyme are invited as well!
  • Brampton Fall Fair -- it goes over four days from Sept. 13-16, and isn't just for farmers! Anyone with hobbies like photography, knitting, sewing, drawing or painting, gardening, baking, canning and more can enter something in the fair. It is great fun to take part, to join in and to just be there. There are flyers for the Baby Show, the Classic Car show, the Fair in general, and more. LINK

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