Pink Magnolia, Brown Magnolia

On Monday last week, the traumatic week when I had to decide about disability or resignation, our Magnolia was proudly in bloom. It was so lovely, but at least a month earlier than usual.

On Wednesday, when I officially handed in my resignation, the magnolia's blooms were brown.

Tomorrow is my last day working at one of my jobs. I don't want to leave the people. But Lyme made the decision. However - if it wasn't for this job, I might still not have been diagnosed! Their support and love through this time mean more than I can ever say.

We all know it is already warmer in this area than usual, and ticks are already out and active. Today's Huffington Post has an article:
Global Warming May Bring More Lyme Disease, Ticks

On Saturday, March 31, there was a run to help pay for the medical bills of a 16-year old with Lyme disease, Vanessa. She is being treated by the doctor I'm seeing in the States. Lots of people braved the cold to take part and they were all in good spirits!

Pictures are here: Vanessa's Run

Interesting fact I realised this week. Vanessa has lost her hair. Kevin has lost his job and his bed. I've lost my sense of taste, my appetite and half my mind.
(Kevin's blog)

We Lymies all lose stuff, have to give up things, have to change dramatically. But our families are being dragged into it with us, and the ones I know, are all grateful to have good spouses or families to help them through! Without that, we would have been in a great mess.

My husband and friends: Thank you for standing by me, for laughing along with the mistakes and forgotten issues; for the love and prayers, making a fuss of any new events, and quietly sweeping up the dead blooms as they drop, sorting out the pills for the week, making a salad for lunch to entice me to eat and silently closing the gate I've left open again.

Lyme bites another piece

A long time since the previous post from Feb. 29. This was a difficult time, having to come to terms with the lack of brain function and the impact it has on my daily life. Not that it bothers me so much, sort of going through the day in oblivion in a way, unless someone points out another mistake, oversight, wrong word, forgotten task or appointment. But I'm desperately sorry for my good husband who supports me without a word of complaint. Sure we make fun of the Lyme Brain / Jello Brain; why not? Easier to laugh than sit in a corner in a messy heap!

The two weeks I had to take off from the other job didn't do much. I had time to visit some friends, but really, the time was more spent with doctors again, and trying to make a decision - something that I just don't seem to be able to do any more. Went to see my GP and had email contact with the Lyme doctor. GP wants to send me for tests with a neuropsychologist, to test the brain function and lack of short-term memory. The Lyme doctor wrote back:
"You would have to leave work and take disability."

There. Written down. That means it exists. And I can't deny it any more. That Lyme had bitten hard and deep, and is sitting in my brain and there's nothing I can do about it right now.

Friends who went the same route, losing jobs, being fired, or being laid off because of Big Bad Lyme, all say the same thing: You will not get better before you take the time to rest completely, be away from stress, and let your body allow the medication to work. Also, if I don't follow Lyme-doctor's instructions, she has the option of refusing me treatment.

Fact is, I need to work to pay for medication. Simple as that. And also to get out, to see the sunshine, to see people, and not to just wallow.

So, the letter of resignation is written. A friend checked it over to make sure it makes sense. And then the wheels will start to roll again. Nobody is irreplaceable; that's not the issue. It is just that I truly loved and enjoyed the people where I worked, made friends, became involved and became a part of the history. It hurts to leave.

BUT!!! Something good has happened! 

Being an organ donor has been a large part of my life, and I've been outspoken about that since I was 12 years old. When the Lyme doctor told me I can now never donate my organs, it was a huge blow. Don't know why it hurt so much, but it was worse news than the fact that I also had Babesia and Bartonella infections. Every time I told someone about it, the tears would flow and I couldn't control it.

A good friend in South Africa said she is getting her family to be organ donors now, to take my place -- it was the biggest gift you could give me. Thanks, Bat.  Still get all vinegar-eyed when I think of your gesture.

However, I've called the University of Toronto a few days ago and spoke to the Anatomy department. Today I mailed back the signed forms they sent me, to donate my body to science. I added a large note that it is specifically for Lyme research if possible, and when I called, the lady said she'll put that on my file as well. Hopefully, if I can't help someone through donating organs, the ravages Lyme leaves on my body, will be able to help the studies in future.

I always said I wanted cremation, and no grave, but a Tamarisk tree planted somewhere, with maybe a bench for people to rest on. This is part of the process, and it feels as if there's a route to take again, where I felt rudderless and adrift, not being an organ donor any more. Strange, really. But onwards now!

This March might be the first one in history that we wouldn't have snow in this area. It is already warm. The ticks are already out and about.

Please be safe, be aware, and tell people about our Lyme Awareness Day on May 19th! 
 And yes, I have more buttons, bracelets, pins and the like left if you want to buy one or more.

Ok. here goes. I'll try to be brief. Lyme Brain strikes again. This is not to gather sympathy or anything, just a statement of facts and not knowing how to go ahead for the immediate future. Actually, I don't even know where to start so will just stumble on. And maybe my tale helps someone else on this hellish journey of getting rid of Chronic Lyme Disease. [Incidentally, why do we give it the "honour" of writing the words with capitals???]

Some friends know that I've mentioned about screwing up things - burning food, forgetting pots on the stove, not defrosting or cooking things properly, messing up recipes I've done for decades which were in my brain without thinking. Hubby would tell me I'm asking the same question several times; I can't follow certain movies or programs, and am scatter-brained where I was focused before. Hence, checking and double-checking everything, especially for my jobs (two different ones). I find it extremely hard to retain new information and to make things "stick" between reading and doing without checking back several times. And even then still mess up more times than not. I'm aware of some of these things if people tell me, other times I'm blissfully unaware. Makes me crazy to think I've checked something and then there are still mistakes. Major ones. 

The doctor in the States who is treating me, is trying to bathe my brain in Vit. B to regain some functions and creating more neuro-paths. I thought things were improving; I felt brighter, but still trouble with the things as listed above. Can't tell jokes any more, for one thing, which was always part of me. I don't know if I'll ever recover all that was lost. The pain is nothing - that goes with the damaged and dead nerve endings in the brain and elsewhere in the ole bod.

So, I've just had a meeting with my overseer. It seems on Sunday there were major issues with the overhead slideshow I'm supposed to do for the congregation. I create printed bulletins (or order or service, or programs) to list which hymns are sung that week, when there are prayers, etc. From that I do the slideshow which has the words of hymns, plus the words of prayers if given, the dedication, etc. I check everything two or three times to make sure it is all there.

Seems on Sunday I've left out two of the three hymns completely, for one there was only the chorus part, and there was no dedication.

For the e-newsletter, there were announcements left out. 

In other words, I screwed up. Bad. And I thought I'd checked everything so carefully.

So, I asked what they wanted to do. They are very good at supporting me, but if I don't do my job, they should not be paying me. I explained about the early Alzheimer's symptoms, at which point I broke down in tears. I don't want to know that my brain is so damaged. It was easier to be in the wheelchair last summer, or use the walker, because then people were naturally helpful or attentive. With the brain damage, it is all inside. Invisible. And I'm less than human. Less than me. Less than what I was or want to be. Invisibly disabled.

It is not fair for the congregation to struggle, for the minister to have to think on his/her feet when something doesn't come up on the wall.

I offered to take a leave of absence; and that they would be perfectly fair to let me go if I don't do my job. I offered to resign.Whatever they decide is fine by me.

I trust none of my own decisions right now. So - we wait to hear.

On the lighter side - you know you have Lyme Disease when:

•  You look forward all week to a boring evening at home.
• You can't wait to get into your long flannel pjs and crawl into bed with an electric blanket, socks and a travel mug of hot tea (and it is summer or the heat is on 22 C in winter).
• One shelf in the fridge is filled with medication. 
• It takes longer to rest than getting tired. 
• When people say: You look so good. How can you be sick? 
• When all the pharmacists and lab workers in town know you on a first name basis. 

Lyme Day Walk - how far?

Goodness, this Lyme Awareness Day Walk is really taking off, and I'm so grateful for that, for the support and awareness circling out to others!

Right now we are hashing out the registration forms, so that people can register for the walk, order T-shirts if they want them, and get things firmed up. Hopefully registration forms will be on the LymeWalk website by this weekend, Feburary 12th.

But -- and this is the question from many --- how far is the walk? Is it a race? What are the prizes? What is the time limit?

No, it is not a race, as such. No time limit. No expectations, other than your presence and sharing the awareness with others. I'm hoping to offer a good prize to the person bringing in the most funds, though, through collecting donations from friends or family, but that's just a thought at this point and not a firm part of the planning.

The "formal" walk part will take around 20 - 30 minutes or so. See map here below or on Picasa (click the magnifying glass to enlarge on Picasa). Afterwards, there will be prize giving and draws, fun and time to talk to Lymies and families, sponsors, the artist who designed the T-shirt, play the Penny Sale, join the kids in a sack race or face painting, and just enjoy the day. I'm hoping someone from CanLyme will be there as well to share some information. Make sure you talk to the vet who will be there, about Lyme Disease in pets - they can be treated!

However, there are paved paths all around Chinguacousy Park. Those who want to walk more, or even jog a little after the Lyme walk, would be free and welcome to do so! It is a lovely park with lots to see. Remember to visit the greenhouse - it is free. Take the kids to the barn and the petting zoo. Walk around the ponds and enjoy sitting on the grass, looking at the ducks and other birds. You are welcome to bring a picnic and propane bbq if you wish. We are planning activities and fun for kids, and during the afternoon, after our event, the park will have a Midway, so families can really make an outing of it!



Ching Park map - click for larger view

 EMOTIONAL SUPPORT
Truth is, this Lyme Awareness Day is supposed to be a family outing, a time spent learning and sharing about Lyme Disease, of relaxing in the park with a picnic after the walk, and for Lymies and their loved ones to get the emotional support we so desperately need from each other. To know we are not alone, that others are suffering and struggling as well, can mean as much as a load of medication and supplements. And for those who are caregivers and friends, helplessly watching a family member in pain or struggling, this gathering is a way to feel they are doing something instead of just standing by.

Last year when Kim and I went to Ottawa in May 2011 to attend the Lyme Rally on Parliament Hill, it was an uplifting experience for both of us (and the others!) to suddenly see other green T-shirts, to talk and hear stories, and to say, "me too!" Together, we can face this battle. And teach others about it so that they might avoid the struggle we've gone through to get diagnosed, treated and well again.

THE DREAM
Any funds raised on May 19th will be donated to the Canadian Lyme Disease Foundation. Their mission is to educate, to research and to teach about Lyme Disease. The dream is to one day have a testing facility in Canada where people with Lyme symptoms can go for testing, without having to face the battle of disbelief, scepticism and "it is all in your head".

Taking part in our Lyme Awareness Day, be it walking or as spectator, paying the registration fee or adding a few dollars as donation, bring us closer to this dream. Who knows, the next person you talk to, might have undiagnosed Lyme disease now or in the near future, and your information might help them on their journey.

Brampton Proclaims Lyme Awareness Month!

Very excited! I've just had confirmation that May 2012 will be declared Lyme Awareness Month in Brampton, Ontario! This is very good news indeed. Means that companies or groups supporting our Lyme Awareness Day on May 19, can get in on the action, posters and more.

We are working on registration forms, but people are already visiting the LymeWalkBrampton website! We put the site up early so that everyone who wants to take part, can book the date of May 19 on their calendars, and be aware of the plans happening.

Support from all levels has been wonderful, and I'm so grateful to volunteers, friends, helpers, contacts, connections, city Councillors and others for their immediate and gracious help.

The Lyme awareness items arrived yesterday - necklaces, bangles, silicone armbands, key rings, even teddy bears wearing ribbons with the green insignia, messages of courage, hope and support abound. Pictures will be uploaded and friends and family can already purchase them if they like. If we sell all before May 19, we'll just order more of the most popular items. Prices range from between $1 for the silicone wristbands to $10 or so for the Tiffany-style bracelets.  All extra funds will be donated to the Canadian Lyme Disease foundation at the end of our Awareness day.

Swedish Lyme patients have to go to Norway for treatment

Picture from the Swedish radio page linked below

Pioneers Abroad Save Borrelia* Patients.
(Swedish Radio program - translated from this link. Also see the original post on this blog.)

Thousands of people suffer badly without receiving any help from Swedish health care.

After years of fruitless attempts to get treatment they turn abroad and get cured. But the patients have to pay the expensive treatments themselves since it's not recognized and approved by the Board of Health. They discard the treatment as dangerous and unscientific. Every year around 10 000 Swedes get Borrelia after being bitten by ticks. Almost all seek help and are cured by a brief round of antibiotics, if given immediately. But there are also several who do not seek help immediately, so the infection gets a grip on their bodies. A while later they get chronic Borrelia, an illness which, according to the Board of Health, doesn't exist. But in Norway & Germany patients are given antibiotics for up to a year, and get cured.

2008 was a tough year for Andrew, 45-year-old craftsman. His father passed away, he had stress at work, young children at home and his summer was ruined by a virus infection. During the autumn pain began in his arms and legs, and he sought treatment.

Antibiotics should never be longer than 30 days. That is the predominant route of many countries' health authorities. In Germany and at the Arena Clinic Borrelia Center in Oslo the patients are given aggressive antibiotics for a total of one or up to two years. Deadly, claims Welfare. - Not so, says Margaret Gabrielsson, who has just been declared healthy after two years of treatment.

Margaret and Andrew's stories are similar to that of many others. They are met by skepticism and neglect here in Sweden and so they go to the clinic in Oslo where they are met by listening, understanding health care professionals who take their concerns seriously. A whole new world opens for those Swedish patients.

Arena Clinic Borrelia Center in Oslo has helped thousands of people diagnosed with chronic Lyme disease to become healthy. But the costs mount up. Treatment is expensive. Blood sample analysis, dotors' visits, alternative treatments and not least, the aggressive antibiotic regimens were given either intravenously or in tablet form. A typical treatment takes about a total of two years and then the patient has been out of pocket somewhere between one hundred thousand and two hundred
thousand dollars.

In Norway the health authority pleased is pleased by dr. Rolf Luneng's work, but his clinic would never be here in Sweden. Anders Tegnell is Head of knowledge management at the National Board. It is he who gives out guidelines and guidance.

I wonder why Luneng's clinic is not allowed to be here in Sweden.

(*Borrelia: Lyme disease, or Lyme borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.)

Scandinavian Lymies have the same battle!

Why on earth can developed countries not treat and care for their own Lyme Disease Patients until they are well and functioning again? Nobody can understand that.

Friend Nyree from Sweden sent a message this morning, about Scandinavian patients having to go to Norway for treatment, with support from Germany! I'm posting her message with her permission here below:

Nyree wrote: Yesterday I was listening to the radio, and an “investigating” radio show, broadcasting on national level had a program labeled Pioneers abroad save Borrelia patients.

http://sverigesradio.se/sida/default.aspx?programid=3375

Needless to say I began listening more thoroughly & also downloaded the show to listen from the start today.

The program spoke about how difficult it is for Lyme patients to be believed, and to receive the proper treatment since antib’s are only distributed during 30 days here in Sweden, and many are mistakenly diagnosed with MS while they truly suffer from Neurological Borreliosis…They mentioned both ILADS & IDSA in the program.

A Norwegian clinic, Arena Kliniken, http://arenaklinikken.no/ are treating lyme patients based on American findings via a clinic in Augsburg, Germany, and they receive many patients from Scandinavia…

(Translation of the article can be read here on this blog.)

The German Lyme Fighter, Armin Schwarzbach

  Thanks for sharing, Nyree! And I'm pretty sure the Augsburg clinic might be by one of the doctors I met and chatted with in October at the ILADS Conference in Toronto - see his picture on the right.

A petition is online to lobby for removal of the outdated IDSA guidelines. The site explains the reasons. Please read for yourself, and sign, then share the link with others. Countries outside of the USA, skip the box for "State" and just choose your country. It will work that way.

* On another level, the website for the Lyme Walk in Brampton has been registered on the weekend and is being developed. For some reason the site is not live (yet) while I'm writing, so a mirror site is there. The petition is linked on the right side of that site. Please share! We hope to have a sea of green T-shirts there that day! Wear green if you have it, but we are designing and ordering shirts as well.

LymeWalkBrampton website or if that's offline, the mirror site LymeWalkBrampton

 Jenni is working on a better graphic of the jailed tick and more pages, info and links will be added as the weeks go by.

Lyme is a Cryme

Plans for the Lyme Awareness Day Walk / Run / Wheel / Stroll are going ahead!

This week we're planning to go to the park to look at the paths and layout. We're arranging a Penny Sale, which is always fun for everyone to play along. Kids of all ages enjoy posting their tickets for the chance of winning a prize.

Check out the website created to host the walk info, registration forms when they're ready, and other items. It was just registered yesterday and still working through all the servers, so the link might not be active today!

Two options:  http://www.lymewalkbrampton.ca is the registered site. But while it is yeasting through the interwebs, try going to grab a sneak peak at what we're working on here: http://lyme.meerkatsweb.ca

The graphic above is one I quickly put together, but Jenni is working on the proper thing in her style!

*First post about the Lyme Walk in Brampton

Lyme Walk in Brampton: May 19, 2012

Chingaucousy Park (pronounced Ching-go-kuzy park) in the middle of Brampton, Ontario, is a huge park, consisting of 100 acres filled with pathways, trees, picnic spots, restrooms, a petting zoo, greenhouse, tennis courts and more. It is close to the City centre, bus terminal and the airport.

Why is this important? Because with the support of Her Worship, Susan Fennel, the mayor of Brampton, a Lyme Disease Awareness Walk will be held in the park on May 19, 2012!

This is early yet, but I'm hoping to secure helpers, volunteers, supporters, sponsors for T-shirts and people to either walk for themselves or for someone who is too sick to walk. The Faces of Lyme disease need to be seen, to show through sheer numbers how important this issue is. We need doctors to be aware and to do early diagnosis, we need better and more secure testing, we need public awareness, and we need protection for doctors and patients alike. Most important: Patients need to be treated in Canada instead of having to spend hundreds of dollars and countless hours to travel to doctors in the USA!

More about Ching Park, with pictures, map and bus schedule is HERE.
Information will follow and perhaps a Facebook page created to have immediate feedback.

Again - this is very early, but I hope it means people can get this on their schedule!

T-shirt design by Jenni

Foggy, filtered light in the sky

Fresh snow on the ground after yesterday's temperatures of -12 C (about 10.4 F), but it became a little warmer today. It was foggy all over today, near Toronto. Soft and gentle.

The picture above was just snapped with the Blackberry camera, and slightly brightened to bring out the red berries in the foreground and to show the wonderful tones in the quality of the light. When you just look without seeing, it all seems to be just black-and-white outside, but there are these gorgeous tones hidden in the background of the day.

When I was a child, growing up in the semi-desert area of the province in the middle of South Africa, we didn't see much fog or rain, other than wild thunderstorms which I loved. I remember the few times we drove through mountains and ran into fog, I always thought it was like being in a cloud. I had a little green plastic cup and would hold that out the window, trying to scoop up some of the softness to eat. What a disappointment to always just find some drops in the cup!

Now, when we have a foggy day as the temperatures change here in Southern Ontario, it often occurs to me that what we see, is never what really is. What an adventure it is to live and discover each day!

Skywatch Friday

Goodreads to the rescue

I've always loved reading, since before starting school and am never without a book. Earlier this year I bought an Aluratek Libre e-reader to help with the eyes being affected by Lyme Disease, and to avoid having to hold heavy large-print books with the painful wrists. Falling apart and all that, you know!

It is becoming harder to keep track of books read, to be read, recommended, or read and enjoyed before.

For Christmas, the Hubby surprised me with a Lenovo Thinkpad tablet, which has a wonderful display for ebooks. I could download applications to add both Kindle and Kobo books, but am struggling with the Adobe Digital Editions installation. No matter, enough books bought and loaded through Amazon and Chapters!

If you're not familiar with Goodreads and like to read, check it out from the links here below! I'll try to add this widget or gadget or whatever it is called, to the right-hand side of this blog.

Anyone from South Africa reading here -- I've been trying for years to buy or order or find two books, both by Elsabe Steenberg: "Dat ek mag sien" and "Rooi Kanarie Hoepelbeen". Both have had a profound influence on me, and were never forgotten, even after decades. Years later I entered into a letter-writing with the author and we continued that until shortly before she died. So, if anyone finds any of those books in a second-hand bookstore or somewhere, let me know how I can pay for them, please! I did bring along another favourite, "Die Heuningwolk" by Maretha Maartens.

Let's see if this Goodreads widget works in the blog!

Meerkat's bookshelf: favourites

Sand and Foam

by Khalil Gibran

Confessions of a Shopaholic

by Sophie Kinsella

The Undomestic Goddess

by Sophie Kinsella

Mister God, This Is Anna

by Fynn

The Full Cupboard of Life

by Alexander McCall Smith

Christmas greetings - stories, pictures and news of the year

Hello! So glad you stopped by! If you dropped in because you received our digital Christmas greeting, thank you for taking the trouble. If you want to keep tabs on when this blog is updated (very infrequently), you can either "follow" on the right, or just put your email address in the space on the right side. When a new post is added, you'll receive an email notification and can then stop by at your leisure.

Some updates about our year, 2011, with a few photo links are below if you want to browse!

Bigger version is HERE (this page will stay open)

About our news and updates --- I'll just pick a few items, but this is easier than sending lots of emails around.
Please scroll down the blog archives (links on the right) if you want to read more entries or posts, see the picture of my medication, look at pictures taken at the Lyme Disease conference in Toronto, and so on.

RECAP
In January I was told by a doctor that the whopping doses of antibiotics I injected daily directly to the bloodstream via a permanently implanted IV line (PICC), was "going to kill me" because my body had turned toxic or something. I had to stop the medicine. This was supposed to be the last push in the treatment for Lyme disease, which was started in April 2010 after being sick since August 2007 with some "unknown disease".

In February the Lyme specialist pulled out the PICC line, saying he would have to do some research to find out what sort of combination medications he can give me. I have been off the medication for a month by then, and symptoms were coming back fast and furious. Pain, confusion, balance problems, cognitive problems, neuralgia, anxiety, depression, all sorts of infections, lack of appetite, being cold all the time, extremely dry skin - to name just a few. Costochondritis (a painful condition because of infection in the joints of the rib cage) was also diagnosed then and is still not gone.

In March I went back to see the specialist and received a tremendous blow: He could no longer treat Lyme disease. Another doctor had lodged a complaint against him for "treating a disease which doesn't exist in Canada". I was set adrift, like hundreds of other Lyme disease patients. Doctors are being forced out of practice. In the USA, four states have now adopted legislation to protect doctors against prosecution if they are treating Lyme disease.

In the meantime, Arno developed a "blister" on his right eye. There is a leaking vein which deposits fluid on the lens, and makes it difficult to focus. It went away after a few months, but came back. In November he had cold laser treatment to try and seal off the leak. We have to wait several weeks to see if the fluid was re-absorbed. It is not painful, but just annoying when trying to focus on close subjects.

He is looking after me with care and concern, and I'm very appreciative. When I located a doctor in the USA who was willing to take me on as a Lyme patient and arranged to see me as quickly as possible, Arno took the time to drive me the 7 hours, through pouring rain, fog, hydroplaning car and unknown roads to visit. During that visit, I was also diagnosed with co-infections called Babesia and Bartonella. There should be more in this blog to read about that. I am now officially battling Chronic Lyme disease.

In May we took two weeks holidays for the first time in our lives! We flew down to Florida and spent four days in Orlando, visiting the Animal Kingdom and Seaworld, petting cownose rays and enjoying the creatures and the plants we love so much. Of course we took in a few roller coasters as well! A few pictures are here. 

Arno at Animal Kingdom

We spent a few days in Daytona Beach which we found beautiful and would love to go back to! From there we drove to Miami, with a detour to Cocoa Beach, and flew out the next day to Puerto Plata in the Dominican Republic.

While there, we stayed in a resort, but scheduled 6 SCUBA dives, spread over three days. We had to have a day in between, since after an excursion, I was sleeping 8 to 10 hours and had to have a day to recover! We loved it, the dives were great and we also managed some parasailing, something I've always wanted to do.

Someone took this pic of us

The new medication, as well as a severely restricted diet the doctor put me on in order to starve the Lyme disease bugs, made for interesting episodes, weakness, diabetic collapse and the like. Once again, Arno was a champion, looking after me, asking restaurants for special attention, and generally taking the responsibility of something I used to do for myself. I'm grateful to have him. Without that, I would have been a great mess!

Theo (our youngest) and Jenni are planning their wedding for August 2012. She is still studying - graphics design since she wants to be an illustrator for Children's books - and wants to finish her studies first. She just put up a site with some of her work. Click on the gallery link to see samples!  Jenn's Illustrations

Jaco decided to take a break from his studies and joined us working at the computer office in Bolton. He is doing a great job and we are all glad to have him there! He is doing inside work, removing viruses, helping to set up computers, writing a program to help us track time and jobs. Then ---- he fell off a ladder while alone in the workshop and broke the heel on his right foot! He was on crutches for 6 weeks, but seems to be back in good health now.

In September we had the Brampton Fall Fair again. I've been the Photography Convenor for a number of years now and am enjoying it tremendously. It saps energy, but is well worth the effort. That is the one volunteer position I didn't give up because of this miserable disease!
Those who like to look at pictures, they were divided into four days. I'll give the links below if you want to play. Day 2 is the one where I got to hold the big Bald Eagle.

• Fall Fair Day 1 - setting up and judging
• Day 2 - some of the exhibits and the Bald Eagle
• Day 3 - more entries and pictures of the Falcon show
• Day 4 - the horses and a guy making fantastic balloon creatures

In September I also turned 50. With the Fall Fair right across that day, I didn't even think about it. But Arno and our friends concocted a surprise party --- and what a surprise it was! Thank you again, everyone, for your love and support!

As a sudden inspiration, long-time email friend Amanda and husband Paul came to visit. Of course we had to take them to Niagara Falls, have them taste icewine, see the lovely town of Niagara-on-the-Lake, visit quaint St. Jacobs with the fabulous craft of the Mennonites, and admire the landscape, farmlands and beauty of southern Ontario. More pictures are HERE if anyone wants to look.

Our summer visit at the cottage belonging to friends, is always a highly enjoyable part of our summer, and we are grateful for the privilege. Sitting on the dock, looking at loons, watching the sunset and the sunrise, sipping coffee in the fresh air, sharing cooking duties --- peaceful restoration, recharging of batteries. And of course having some tubing on the lake as well! Pictures.

In November I saw the Lyme specialist again. She changed my medication (more info in the blog, under November 21). Arno has to sort out all the pills and supplements, since I get completely confused. At the moment my brain is acting as in the early stages of Alzheimer's. We're doing all we can to reconnect pathways and to stimulate the brain to heal itself. But sorting out more than 45 pills per day is mind-boggling at the moment! Not to mention cooking --- our electric rice cooker is one of the best things we ever bought. We eat a lot of stews and soup, steamed veggies and brown rice with pan-seared chicken or pork, or meat on the bbq (braai). Arno is enjoying having Jaco at home again, since the two meat-eaters can indulge a little!

Theo is doing lots of cooking and baking. His shortbread cookies are divine and in high demand for Christmas. He has been baking beskuit, makes pizza, has a fabulous potato soup and other things he makes regularly. Wonderful to see the boys being young men, and enjoying each others company.

This is enough gabbling - sorry if it bored you, but hope you are caught up a little about our lives! Working two jobs (two days a week at the church and three days a week at the computer place), keeping doctor's appointments and trying to get enough energy together to do some housekeeping seem to take more time than it did before.

Blessings to you and yours for Christmas. And thank you for keeping in touch, even if I'm bad at following up these days. Hopefully that will pass in another two years or so after treatment.

Christmas wishes

Winter sky; hopeful light

Winter always held a special magic for me, even before we were introduced to snow in 1997. There is just something about the crispness, the puffs of breath, the stomping of feet, and the appreciation of coming inside to warm up. Perhaps I'm older, but the winter light, the clouds, the sun traveling low on the horizon during the cold months and the light holding strange shadows really fascinate me here in Ontario. Today when I left the office, this was the wonderful sky that welcomed me outside:

Pink diffused light

I can't get enough of how the slightest bit of weak sunlight turns a mediocre scene into a delight. It takes my breath away with a dramatic sky, with interesting clouds being lit from the side and diffused light softly touching buildings and corners. The camera is usually nearby, not to take a prize-winning picture, but to capture a ray of hope when it is least expected, often while I'm pre-occupied with thoughts of traffic, chores, shopping or work. What a beautiful world we live in!

Skywatch Friday

Donkey Sanctuary

It was raining most of today, but we wanted to go get our Christmas tree. We stopped at the Donkey Sanctuary and got some lovin' in for the animals there. Since it was so wet, we didn't get to be very close to the donkeys, but did get some ears to rub, faces to scratch, velvety noses to pet and pictures of different critters.

This quote with the two donkeys in the background touched me especially.
A few more pictures are HERE. 

Afterwards we went to pick a Christmas tree from a nearby farm. Very weird with not a speck of snow around, though! We chose a very fat little spruce. Jaco, wearing only a T-shirt with a sweater over, was pulling the tree sled and was freezing cold as soon as we were among the growing trees to pick our own! We always try to get a fat tree, and this one was no different. It fills the corner in the house and the rabbit was sniffing the air. At least there's the smell of Christmas now, even without snow!

On the health front. The Lyme is being a pain again. Been having sore neck, various pains, headache, fever and all those familiar old friends again. But, if I allow those things to tie me down, I'll never get to go out, or spend time with the family, or make memories. So, pay a little for time out, rather than be tied to home and bed. Fair exchange, no?

Dr. Murakami on Lyme

Dr. Ernie Murakami posted on my Facebook wall: 

"I will be co-hosting the radio show every Sunday evening with Sue Vogan from North Carolina starting on Dec 4th, 2011 (07:00-09:00 PM, Eastern Standard Time)
I can dialogue with you then and any one interested in Lyme disease."

This is the information about the show:
Sue Vogan's Radio Show:
IN SHORT ORDER, every Sunday, 7-9 PM EST
http://www.blogtalkradio.com/in-short-order

He posted on his own wall: 

"The Medical Profession remains divided despite the Federal Governments, Provincial governments and other Associations making statements that Lyme disease is a clinical diagnosis and a major epidemic is now eminent.

"... But it is only a matter of time when Education becomes the major issue in converting the non believers to believers.

"The evidence is mounting rapidly with the N.S. recent studies releasing the information that the tick population with Lyme spirochetes is rising.
The Manitoba Health Department in 2009 reported 14% of the ticks taken from patients were infected with Borelia burgdorferi and 5% with Anaplasma phagocytophelia.
Minnesota Health department has reported an average of 1000 serologically positive cases annually for the past 6 years.

"Along with these findings there are proportionate increases in Ehrlichiosis and Babesiosis which the medical schools are not teaching and primary care physicians are not aware of any co-infections.

"Patients urgently need financial assistance to seek medical care in other counties now, why do families have to sell their homes, suffer in silence with a misdiagnosis, be ridiculed by physicians and eventually some commit suicide.(Two personal patients)

"I plead that our medical profession will soon sit at one table and discuss all the knowledge that is acquired by evidence based medicine."

The Invisible Disability of Lyme will be very public!

Lyme Disease. Super Sized.

The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron in New York City.

 

Lyme disease has been an invisible disability ... The International Lyme and Associated Disease Society (ILADS) launched a public awareness campaign by making this invisible disability more visible in Time Square during the Holiday Season. Greater public awareness may help to reduce the catastrophic disease burden caused by Lyme and associated diseases.

ILADS is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron.

The Jumbo Tron is anything but invisible. The giant video screen is 26 feet tall and 20 feet across and is strategically positioned at 42nd Street between 7th and 8th Avenues in New York City. The spot will run every 20 minutes for 3 months. It is estimated that 1.6 million people pass through Times Square each day. The spot will remain in place during the Thanksgiving Day Parade and New Year’s Eve celebration for bonus exposure.

The all-type animation focuses on the statistical fact that Lyme disease is growing faster than AIDS.

"Lyme disease is an invisible epidemic," said Barbara Buchman, Executive Director for the non-profit International Lyme and Associated Diseases Society (ILADS). "Tick-borne illnesses spread quickly and the diagnosis, which is largely based on symptoms, can be elusive unless a physician is Lyme-literate."

(Information shared from Putting Lyme Behind You and ILADS Media Center)

Another lobby for Lyme!

Been swapping emails with my friend and birthday buddy, Joe Gray today. As a farmer and as a friend, the drama around my struggle with Lyme disease has been something he has been talking about and informing others. Before sharing his news, here is a picture of Joe and I earlier this year, on our birthday - since we each celebrated a significant number this year!

Joe and I at the Fall Fair.

Joe wrote: "I attended the Ontario Federation of Agriculture's annual convention on Monday. There was a resolution brought forward asking the OFA to lobby the government to acknowledge Lyme disease in Canada. I explained the difficulties that you have gone through and still are. The resolution was accepted."

The exact wording of the OFA's resolution: "Therefore be it resolved that the OFA lobby that the Ontario government encourage the medical community to recognize this is a serious disease, adopt more advanced technologies to improve diagnosis and treatment of acute and chronic Lyme disease as well as improving public and physician education about the disease, thereby eliminating doctor reprimands for actively treating Lyme disease."

Isn't that great news?
Thank you so much, Joe, and everyone else who gets a word in about Lyme, who lets others know about how to do the simple checks and to be aware, not paranoid!

OFA website

Winter is coming!

What a glorious, shining world we looked out on early in the morning! Everything was covered with a fine layer of ice, and as the day warmed up, the sparkling and diamond drops were everywhere. This is a Blackberry shot of our bbq (braai in Afrikaans) - Jaco forgot to put the cover back on after they "tanned some steaks" on Saturday.

 Yes, I know those who  were out late last night did not appreciate finding their cars totally iced over and their ice scrapers still locked in the trunk, which couldn't be opened because of the ice ... but it is very pretty! Driving the work the street signs had long icicles hanging down, making the drive incredibly interesting. Mundane things decorated by ice.

Ok, Bat, I know you say snow is eeeeeevil .... but you'll have to come here to beat me up first!

First needle & elevated lead levels

Well, this one was a success!

I asked Arno to watch me do the first injection, just to be sure not to mess it up. At least I didn't tattoo myself with the red stuff! This will have to be done three times a week for the next 6 months to a year, and hopefully will help recover some of the destroyed brain pathways.  It burns to go in, though, but only for a second. No big deal.

We sorted out the pills for the next week. About 45 pills a day, without the liquid supplements and probiotics. Right now I'm also on Malarone, which is a malaria tablet; 4 a day for the next three days, then 2 a day for the next 3 or 6 months. A friend had severe hallucinations on malaria tabs and told me last night to watch it!

Anyway, the new diagnosis. Seems I have elevated lead levels. That was one of the tests the doctor wanted to do and the one I had to Fedex, as mentioned in the blog post under the pic of the new pills. Last night I received this email from the Lyme specialist:

 
"Your lead is elevated at 25. I am going to attach how I treat it, but you can also see a naturopath in Ontario for IV chelation.
It may not resolve rapidly, but need about 3 rounds of the detoxamin. The IV treatments also can take a while to clear it all as it is stored deep in tissue, in bone."

Then from her email, the cost per round (I won't copy and paste the whole thing only the bottom line):

$270.00 for 7.5 weeks plus $30.00 packaging and mailing =$ 300.00 US

Just picked up new meds

I've just been to the pharmacy to get the prescriptions for the next month or so. It was literally a shopping bag full! Some of the prescriptions can no longer be found in Ontario, and we had to pay for two months' worth while we were in the States. The syringes are for injections I'll have to do myself, three times a week, for the next 6 to 12 months.

All the extra tests that were ordered, have now been done. The heavy metal testing has to be done in the States and the specimens were sent off by Fedex last Monday. This afternoon I took the requisition to the blood lab and had that work done.

Look at this lot! Maybe I can open my own store on the street corner! The last few years, since I became infected in 2007, was a learning curve of note. Lots of new knowledge gathered, although I could have done without that diploma.