Sunday, March 24, 2013

Breaking News

News for the Brampton Lyme Disease Awareness Day just keeps getting better!

First Dr. Ernie Murakami let us know that he will be on the bus to Niagara Falls on May 17 and attend the Awareness day on May 18. He is flying in from Nova Scotia for the event.
Jim Wilson in Toronto, 2011  

Last night Jim Wilson, president of the Canadian Lyme Disease Foundation, sent email to say that he will join us on the bus to Niagara Falls as well as at the Awareness Day on May 18! He is flying in from BC.

Dr. Ernie and I, Toronto, 2011  
This is exciting news for Lymies who are planning to attend the awareness events in Brampton or Niagara Falls. Both these men have given so much of their time, their expertise and themselves to help others along the way. It would be an honour to have them here and I hope they remember to pack their smiles!

Items have started arriving from my friends far and wide across the world to be used for Silent Auction items or for prizes. One beautiful item from England is a handmade glass pendant, using rainbow fused glass and with elephants etched inside. Another is a lovely watercolour painting, sent from South Africa. Someone else donated a gift certificate for craft items, especially quilling to be ordered online. There are T-shirts and more being promised and ideas being discussed about what to send. I'm so grateful to everyone, in every way, helping to make this day a success.

The LymeWalk website has been updated and the REGISTRATION FORMS are ready for those who want to download. As soon as you are registered, by completing the forms and sending them back, we can send the fundraising package which includes everything needed to talk to your contacts.

  • On April 18 a Lyme Disease support group will meet in Nobleton, Ontario, from 7 to 9 pm. The meeting will be in the library at 8 Sheardown Drive. A flyer is on if you want to download, advertise or share.  
  • On April 19 to 21 there will be a Lyme Disease Awareness table at the Caledon Home show in Bolton, Ontario. If you are in the area, please come in and say hello! 
Below is an information sheet about the Lyme Awareness day in Brampton, May 18. The top part is the info about the Walk, including the address. The bottom part is busy, but gives the "breaking news" for everyone to be aware. Click to see a bigger view. Please share! 

Tuesday, March 19, 2013

It DOES get better!

Pussyfootin' to health in my beloved toe socks
As I'm trying to write this post without being overly dramatic, I hope you'll get the feeling that goes along with it. But if not, please ask or reprimand or comment and I'll try to fix or explain better. For now, I'm softly stepping onto the path of better health.

It is now going for a month of my being off antibiotics. (blog post)  The first few days were giddy ones, feeling like a vacation and freedom, not having to swallow pills every few hours. And then the symptoms slowly started creeping back. I didn't notice so much, or I tried to ignore them, but hubby was ever vigilant. I felt bad for a few days but of course nothing was as bad as it was before.

And that's what I want to say to other Lymies who might be reading here: It DOES get better.
Truly, it does. We might slip back, might feel worse for a few days, but not those horrible, dark, pain-filled days that seem to be never ending as when we are very sick. This I've heard from a few lucky ones who have experienced these golden days, and now I can add my own voice to theirs.

What I didn't realize, is that a meal replacement hubby started me on years ago when I was too sick to eat and didn't feel like chewing or going to the trouble of digesting anything, did more for my general well-being than I knew. We ran out of the powder more or less at the same time as I went off the antibiotics. As I became more run down during the days following, hubby started saying we need to get the powder back and start using it again. It took a few phone calls but we were quickly back up and running.

Almost immediately I felt a difference. After about two weeks it is clear: The powder does help, and I feel so much better for drinking my smoothie again in the morning! I should probably do a blog post about that on its own, but please ask if you want to know. There's a contact button at the top of this blog. If you view this on your mobile device, you might have to switch to the Web version - not sure how everyone's displays work!

Maybe you had a look at my Bucket list before. Items 5, 7, 10, 11 and 15 on the list could probably be scratched out now, since the last two weeks or so!

Going out at night (item #11): On Friday, March 15, I enjoyed an evening of darts with a group of friends. I'm no big darts player and am happy when I hit the board, but my husband is and he loves it. On that evening, I closed two games (gasp!) and was promptly dubbed "Hawkeye" by my team captain. It was a fluke, be sure ... but afterwards, we sat and chatted, sharing jokes and taking pictures, and I was in no big hurry to get home to bed. I didn't think much of it until the next morning, when hubby said it was the first time in years that I actually sat and visited with the people after darts instead of being dead on my feet.

Thanks, patient friends, for still allowing me to play sometimes even though I've been a deadbeat the last few years! And Tom, I still believe you were "crying-laughing" !

TV Programs (item # 5): The last week or ten days I've been able to actually follow along while watching "Criminal Minds" instead of having to pull over the laptop and look for a synopsis of the episode. I could do it all by myself! I didn't want to get too happy, thinking it wouldn't last. But now I'm starting to think it might be a sign of getting the concentration back.

Made 11 jars of antipasto and didn't burn anything!
Recipes (item #7): Last Sunday I attended an event at a home with some friends. Girlfriend Pam was hosting and had several goodies to share. I tasted around all my old favourites and then found a mixture with olives and things. It was delicious and I stayed put, munching away, insisting that she shares the recipe. She did and five days later I made a batch of Antipasto myself. Sure with hubby helping to chop, but for the first time in years I was in charge of the pot and the mix, while he was behind the chopping board! What joy! Especially to take a jar full to an event last night and to watch the ladies scoop out every last drop of the mix, commenting to Pam that they need the recipe too. They didn't know how joyful it made me, seeing them smack their lips and knowing that I knew what is in the recipe and could recite it back, as in days of old. Before Lyme, that is.

Concentration (item #15): The biggest improvement that makes me happiest is that the concentration seems to be coming along. So much so that I am enrolled for an online course and have done several of the assignments already and actually retaining the information. Humbly grateful to have that gift again, which I used to take for granted before. Hey, I could even tell a few jokes the other night and remembered them all by myself as before!

Lymies: We have to change the tide and together we can get better. It is such a supportive community and having someone say, I understand, is a powerful gift to receive when you're awash in a sea of disbelief.

I also looked back on my "List of 100" and had fun reading them again, thinking that some of them might get crossed off now in the near future. Always did want to jump out of a plane, so maybe one day.

Things are getting together! We need a few official sponsors, though - they will come, I firmly believe. I've ordered the small items that sold so well last year at the Walk and they should be here by mid-April.

Confirmation received that Dr. Murakami will be with us on the bus to Niagara Falls, and will attend the Brampton Walk on May 18. Have you booked your seat yet? There is an online registration spot if you want to join in, but you can also send me a cheque or pay via PayPal if you want. Just let me know in time, please, so that I can secure the bus.
As the last thought: My dear friends who read here on this blog from time to time, thank you for being on the journey with me. Without your support I wouldn't be doing very much of anything. Thanks for your acceptance and for sharing your lives with me, for helping and volunteering and cheering along, donating your time, giving me a gift of yourself. 

Friday, March 15, 2013

Hints to start an awareness event

May is Lyme Disease Awareness month. There are all sorts of events happening everywhere, with discussions buzzing on the Internet including on Facebook. I'm still busy arranging the Brampton Lyme Disease Awareness day and have had several emails from people who wanted to arrange something in their area but didn't know where to start. 

I didn't have a clue when I started planning in Nov. 2011 -- only that I had an idea to arrange something in a city park in May 2012, and then started asking permission. It was utterly amazing to find how many people offered help, support, ideas, suggestions and to be on hand on the day itself.

This year, it is going great with lots of exciting events happening to raise awareness about this disease.

My first hint: Do NOT try to do everything yourself! Talk to friends and if they offer help, ask them what they would like to do or what their idea is. Let them run with it. We Lymies have to conserve our energy and our friends love to be able to do something to help us. 

So, here are some ideas for those who want to raise awareness about this very fast spreading disease. You might have some suggestions of your own to add to the Comments below, or perhaps one of these ideas sparks another idea for you! Start small. Together, we grow, and every little bit of awareness helps with the groundswell. 

I'm just writing as ideas occur to me; these are by no means the last word as far as awareness goes. You'll probably find many more around the Net. 
  • SIGNATURES: Collect signatures for the petition to ask for a National Lyme Disease Strategy in Canada. Remember to mail them in regularly. Every page or two that you fill, should be sent off to Ottawa immediately. It is free after all, so carry a few envelopes along with the petition. 
  • If you're housebound, get some bright green ribbon, hot glue or small copper safety pins and create awareness ribbons. Ask friends and family to wear them. Pin one to your dog's leash or collar. If you're part of a community group, challenge them to "go green" and to get as many members as possible to wear green ribbons during the month of May.
  • GREEN EVERYWHERE: If you are mobile, hang green ribbons everywhere you can. On your trees or balcony, on a friend's trees or yard, on your car's aerial, on your mailbox --- ask permission to hang them on a community park or wherever you have connections and supportive friends. 
  • VIDEO EVENING: If you have a (licensed) venue, arrange for a screening of the award-winning documentary about Lyme Disease, called Under our Skin. Copies are available from the LDAO and if you click on this link, they get a percentage of the purchase price. 
  • COMMUNITY TABLE or HOME EVENT: Ask permission at a street market or anywhere your community has a group of vendors or volunteer groups together. Hand out brochures to anyone who stops by your table.
    Brochures are available from the LDAO, or CanLyme or the Murakami centre. You can also download and print your own from their sites if you are just getting a few people together in your home to listen to your story. 
  • LIBRARY: Maybe your local library will allow you to set up a table with some of the books about Lyme disease. If they don't have them on their shelves, they could order them from another library. Talk to people who are browsing books and let them know the disease is out there. 
  • OVAL ROUNDS: If you have access to a track with or without bleachers in your town, perhaps you can get a few friends together and arrange for a sponsored walk to raise awareness. People can get their friends to pledge an amount for each round completed. Money can be donated to a Lyme Disease Charity of your choice, or divided so that different Lyme charities benefit. 
  • GARAGE SALE: As spring cleaning approaches in the Northern hemisphere, get a few friends together to clear out their closets for a rummage sale, and the guys for a garage sale. Get some brochures together (see the point under Community Table above) and hand them out while people are browsing. If you set up some posters with common Lyme Myths, it will start the conversation when they ask questions. I've made T-shirts with "Ask Me About Lyme Disease" on the front -- if you need some, I could order you some and we can sort out delivery and postage, etc. 
  • LYME GREEN THUMB FUNDRAISER :-)  [This one came from Janet S] People could either buy a pack of seeds and grow them in peat pots or dig up extra perennials in their yards (if they have established back yards) and have a table at the May walk. People could take a plant and make a donation. I give credit to my friend Marianne Middleveen for using the word 'Lyme green thumb' which made me remember that Rob Manten provided extra perennials to some Lymies a few years back. I hope the idea appeals to you :-)
  • RAFFLE: Remember that you need a raffle license! Lots of paperwork, lots of hoops to jump through. Before you start planning something, check with your local municipality about what is needed before you find yourself in a heap of trouble. You have to satisfy local and provincial laws, as well as maybe wider laws as well. 
  • SILENT AUCTION: There are many ways of doing a silent auction. One of the most important things is to think about how you are going to have people bid, and how they are going to pay. If you only accept cash, that's find, but people would be limited as to how much they bid. If you take credit cards, you would need a mobile machine or computer application and a 3G or network connection, plus laptop or iPad. For people to bid: Do you want them to register their information first and get a number to bid with, or do they only use their phone number as a bidding number? Talk to people in your area who have done those and lean on their knowledge. You would need to create bid sheets, think about minimum bids and bid increments, when to close the bidding, how to get better bids, and more. Someone must be arranged to deal with payments, checkouts and someone to hand over the items that people paid for. You also need an official letter to ask for donations of items. I'm sure there will be specifics online if you do a search for something more you need to know. 
  • T-SHIRTS: Make and wear your own T-shirts, depending on what you feel comfortable with doing. Hobby stores like Michael's have T-shirts on special every so often, and they have all sorts of paper that you can print and iron-on. Or if you are artsy, go crazy with fabric paint, especially the kind that forms a raised line. Add glitter or buttons, ribbons and other things to make it your own. People have taken my T-shirts literally off my back so I always have an extra one somewhere in a bag. The one below was worn yesterday again in a Tim Hortons and several people came over to do just that: Ask me about Lyme Disease. We had an unplanned mini-awareness day in the middle of Timmies --- stayed there for three hours and spoke to lots of people. I always have some of my homemade business cards with the blog address in my pocket. 
  • T-shirt to encourage others to ask about Lyme disease. 
  • LYME WALK OR RUN: If you wish to organize a walk or awareness event, you would need a team of helpers, a venue, a date, some sponsors, advertising connections, T-shirts and a way for people to donate. I find the online donation the best, or then cheques made out to the charity to benefit from the walk. 
  • ADVERTISING: Make sure you check with your local newspaper, library, community notice boards and more for free advertising of your event. And don't forget about Kijiji! Amazing tool to use - I post there all the time. 
  • POSTERS: Place posters or notices on boards around your area and ask friends to do the same. Hint - smaller ones have a better chance to be posted, rather than an expensive 11x17 size. 
  • Hope some of these would help you planning an event during May 2013! I would love to read some comments from you, either posted below or shared via email. 
Please post a comment below if you are planning an event anywhere in Canada. I'm trying to add them all to a Facebook page, as well as elsewhere on forums, for more people to get the news and to take part in some way. 

Wednesday, March 13, 2013

Bus between Niagara Falls and Brampton

Dear friends,
if you are following this blog, and / or the Facebook pages and / or the website, things are happening fast! The month of May will have awareness events everywhere.

One of the exciting pieces of news is that I've just this morning received confirmation that not only the Falls, but also the Peace Bridge at Niagara Falls will turn green on May 17, 2013! The bridge will go green just after dusk, and remain green until 1:00 am.

Imagine the whole area green!!!

This could be an amazing event for Lymies. Many are planning to go to Niagara Falls in time for the lights on the 17th, stay over there and then go to Brampton to take part in the Lyme Awareness Day.

To make it easier, there is a bus being arranged from the Niagara area to Brampton and back on May 18. Details are posted on Facebook at the moment, but will follow here and on the LymeWalk page as well as details are confirmed.


A bus has been arranged! Tickets $10 per person and can be booked online. Seats are limited, so please let us know if you want to secure a spot on the bus. There will be a surprise visitor on the bus ...

Bus to Falls on Facebook

Book a ticket on the bus from Brampton to Niagara Falls

This post was done very quickly, but more is to follow!

Thursday, March 07, 2013

Niagara Falls will go GREEN!!!

Things are really happening to get awareness about Lyme Disease on the map! I have been waiting and holding on to announce both the events we're working on, but news is starting to filter out about the one already approved.

So, for now ---- here's a graphic to announce the Green Niagara Falls! I've blurred out the second one since we don't have formal approval yet, but wait a while and we should have them both to talk about! Sounds cryptic? Sorry about that, it is really not intentional.

On Friday, May 17, the day before the Brampton Awareness Day Walk, Niagara Falls will be lit in green for 45 minutes in total!

Exciting? You bet it is!!!

We are talking about arranging a bus to go down from Brampton to Niagara Falls on Friday, May 17, in order to be there for the green-flowing Falls. We can take pictures, make noise, hand out brochures and  make sure people there get the message about Lyme Disease.

Together with various other people like Melisa from the LDAO, people are working on applications and a press release about the other icon to be lit in green. Lots of red tape there! We are not allowed to publish anything until formal approval was given. But as soon as the expected "yes" is given, we'l let you know!

I've been on the phone trying to arrange for a bus, but no luck so far. Brampton Transit doesn't go to Niagara Falls and GO buses don't charter their buses. Anyone have any ideas? We need to be there, but not be too tired to come back and be ready for the Brampton Walk the next day!! See the post about the Bus to the Falls as arranged, please.

For those who are unable to go to Niagara Falls to see them be lit green on May 17th, they can view it on the live free Niagara Falls webcam.  It may be comforting to see. (Thanks for reminding me to add the link, Doris!) We'll probably gather and meet at the Horseshoe or Canadian Falls at first, but then spread out towards the American Falls. It all depends on how many people show up wearing green and carrying glo-sticks! CLICK: Niagara Falls Webcam 

What would be the time difference where you are? We are working in Toronto, Canada time. Here is the Worldclock website for you to check what the time will be for you on May 17, 2013, when it is time for the Falls to go green! WorldClock Link

It has now been almost three weeks since I've gone off the antibiotics. Things went well the first week, and for half the second week! Then symptoms started coming back. They were mostly just little ones and I ignored them.

On Saturday, while out with friends, all was fine for some hours and then the stiff neck and raised shoulders thing, the creaks and tweaks started again. I ignored it. It got worse. Finally I felt like the bottom guy in a totem pole so asked to be brought home to get warm in bed.

Sunday morning dawned bright and beautiful. Hubby and I shared some scones with strawberry jam and cream for breakfast and discussed various plans. Next moment it felt like I got bitten by a tsetse fly and had to sleep immediately. Couldn't even keep my eyes open properly until back in bed where the sleep came down like in the early days of the onset of this disease. I was so cold even under the duvets and sheets, wearing long flannel pjs, that the fluffy bed socks from South Africa had to come out as well. Thanks, Ma!

Various aches and pains are returning. A dull ache behind the left eye is noticeable. But nothing like what it used to be and I haven't lost my sight or seen the return of the eye infection.

I'm ignoring these blimps as much as possible! There are things to do, plans to make, arrangements to get sorted out and the body needs a break from the constant onslaught of antibiotics. It might be the Bab-2 drops getting all hot and heavy. Who knows?

I'm also still using the Auum oil, which I'm convinced protected my brain from being completely ravaged by this disease (read testimonial), Oil of Oregano, Evening Primrose oil, Cats Claw, Resveratrol not from grapes, Vit. C from rosehips, Olive Leaf extract and inject myself with Vit B three times a week. Two or three days ago I also went back on Plaquenil since I was prescribed that anyway for Rheumatoid Arthritis in 2005. It is part of the treatment for Lyme Disease but I wanted to see what would happen without all the pharmaceuticals. Joint pains are becoming worse and hubby, who sorts out my pills, felt the Plaquenil should be brought back into the mix.
If I can hold out until May 8, 2013, without a major relapse, I can carefully consider myself in Remission and hope that gives hope to others.

While writing this post, I had a phone call from the credit card people. Seems my card was compromised and used to buy over $500 of shoes from Australia, books all over the place, a Bell order was put in ... so now the card gets cancelled and a whole drama happens. Always something fun to happen somewhere to keep us on our toes!

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