Lyme Disease Debacle: Let’s End The Denial

David Cubberley, the B.C. Director of the Canadian Lyme Disease Foundation has posted a letter to the B.C, Minister of Health. In it he provides a good synopsis of the situation facing more and more patients, not just in British Columbia, but also across the rest of Canada. Accurate information is being withheld from Doctors and from the general public. Testing is woefully inadequate. And many are suffering. Come on Canada, let’s get our act together. Don’t run away from lyme disease!

British Columbians are being denied access to medically necessary care due to flawed tests and an induced skepticism about Lyme’s prevalence promoted by the CDC on the U.S. model. Actions are needed to provide doctors with appropriate diagnostic tools and to free them to recognize and treat Lyme effectively when it appears in their offices. This is not difficult to do, but it means getting out from under the inadequacies of the BC CDC’s suppressive approach to this disease. And this needs to be done before the disease becomes an epidemic.

[From Lyme Disease Debacle: Let’s End The Denial]

It’s snowing inside!

One of the many frustrations of being stuck in bed for too many years due to complications of lyme disease is my inability (and lack of energy) to participate in the world at large. It is far too easy to get down and to see everything as half empty. After a while living life as if it were a tragedy, it isn’t very much fun and even becomes somewhat self-fulfilling. As I have often said to my family, “don’t see walls, make windows.” For anyone, everything in life can seem like it is too much to bear and to overcome, but there is always a way to see it through. Even if my situation doesn’t change, my attitude toward life and everyday challenges can be positive, and a blessing to others. As God sustains me each day in my own situation, I can bring people and experiences to me!

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I love winter! Of course, many Torontonians would say that I wouldn’t love it so much if I had to bundle up, shovel snow, and drive in it….. But no, I used to love that too! I can see the snow coming down and sitting on the spruce outside my second story windows, but I can’t see it on the ground. What I can do is see snowflakes inside my room! My daughter Catherine made some beautiful six-pointed snowflakes, with some assistance from Erin and Kristine. Apparently this is not the usual straightforward way of making snowflakes. The results were beautiful, and my room now has a permanent winter view, even when the blinds are closed.

I can’t get out to see family and friends, but as my energy allows, I can welcome people in to see me. The encouragement and help we have received from others has been overwhelming.

I can’t go out to see a show or to the theatre, but I can enjoy the classic movies of the last century on the Turner Classic Movies channel.

I can’t easily keep in touch with family, friends and the world, but I can use my laptop for email, web connections, RSS news feeds, etc…

I can’t hold and read physical books, but I can download and read ebooks on my old Palm. My favourite genres are Science Fiction and Global Sustainability. I am currently reading the sci fi novel “Echo” by Jack McDevitt and have been reading “Hot, Flat, and Crowded” by Thomas L. Friedman, and “The End of Poverty” by Jeffrey D. Sachs.

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I can’t be an educator any more, but I can still help educate. I help my family with budgets, math, school work, decisions, goals, values, priorities, computer issues, and so on. And I can still help friends with technical and computer questions. I try to help others avoid getting lyme disease, and also connect with those who are now struggling with it and can’t get any help and don’t know what to do.

There is always a window, even in the darkest times. There are many things which I cannot do, but there are many things for which I can advocate, and concerns which can be expressed. I am concerned about the spread of lyme disease, especially as it is driven by climate changes which are only now beginning to seriously impact our lives here on Earth. I am concerned about the many thousands who get lyme disease every year and get to watch their own freefall, oblivious as to what is happening. I am concerned about ideological battles which distract us from the quickly encroaching issues of poverty, homelessness, drought, economic disparity, sustainable energy development and deployment, etc… I am concerned about the priorities which nations and peoples often hold, whereby personal convenience, wealth and power take ever increasing precedence over community and global citizenship and the future sustainability of our world and its species. Each of these issues has a solution. My own issues have solutions as well. Sometimes the solutions involve how best to manage where we find ourselves, but a positive and prayerful attitude combined with effort can make all the difference. Continue to think of me, for I am seeing some slow and encouraging improvements 🙂

Farewell to Alice

Alice Embury

Grandma Embury

Nannie

September 23, 1908 – December 23, 2010

throughout her long life of 102 years she has also been known as

daughter

sister

wife

mother

grandmother

great grandmother

great great grandmother

friend

….. to me she was my grandmother and my friend

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her talents and passions were many

everything she put her mind to she mastered…..

loving matriarch of her extended family

listening ear

positive spirit

inspiring character

godly woman

cribbage master extraordinaire

knitting for family, friends, strangers, charity

transforming yarn into baby clothes, blankets, afghans, scarves, mittens, hats, sweaters

prolific letter writer

enthusiastic reader

crosswords and puzzles

quick walking stride, no trek too long

rest in peace my dear Nannie, our memories of you live on

Merry Christmas from the Leggett Family

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from the Leggetts!

Dear friends and family,

We wish each of you joy during this Christmas season and hope that there are many blessings you can recall as you look back on this past year. For us the year has had some important events and many quieter moments.

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David remains in bed, though making some small steps forward. He now has a physician and alternative health practitioner who will be able to try to treat him for his illnesses at home. This is a huge step forward and certainly an answer to many people’s prayers. One highlight for David this year was when we managed to find a window of opportunity to bring his grandmother, who is over 100, to visit for a couple of days. David hadn’t been able to see her in 4 years. She had been saving up her energy and surprised us all with how plucky she was when she was here. 201012230307.jpg

Erin made the transition from elementary school to high school this year. She had an opportunity to go to Ottawa with her middle school band in the spring for a national band competition. Now she has followed her sister to high school and continues to play flute in the junior band. She is also enjoying dance and drama there, along with the regular subjects. In her spare time she spends a lot of time with her pet mice. Erin loves animals.

Catherine spent half of the summer as a camp counselor. She enjoys working with young children. She is in grade 12 this year but will be staying in high school for another year as she has been heavily involved in arts courses – dance and band. She has the privilege of being involved in the school dance company this year as well, which involves lots of extra time, but also many opportunities.

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Kristine’s parents had their 50th wedding anniversary in June and it was a treat to be able to get there and help them celebrate. She continues to enjoy her job as a Nursing Practice Leader at the nearby hospital. There are always new challenges and the privilege of helping to stir passion for patient centred care in staff.

All the best in the new year.

With love from David, Kristine, Catherine & Erin

Toronto, September 24th to 27th: Lyme Disease in the crosshairs

The next number of days are very important for lyme disease awareness in Toronto and the Greater Toronto Area (GTA). Mainstream media involvement in spreading the word about the facts, risks and prevalence of lyme disease has been on the rise over the last year or so. Please, please, please…. if you know someone in the GTA forward the following information to them, especially if they enjoy the outdoors – cottages, hiking, camping, walking in the woods, strolling outdoors, etc… (yes, this pretty much covers everyone).

1. Tune in Friday Sept. 24th – “Under Our Skin” producer/director Andy Wilson will be interviewed Friday, Sept. 24th on Goldhawk Fights Back radio at 12:10 pm EDT ahead of this weekend’s film screening.

2. See the Oscar finalist “Under Our Skin” – A gripping tale of microbes, medicine & money. “Under Our Skin” exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time. Sunday, Sept. 26, 2010 at the Isabel Bader Theatre, University of Toronto, Victoria College campus. Two showings. For more information, check out the Canadian Lyme Disease Foundation information pages (here, here and here).

3. Toronto 2010 Wall of Hope – Please join the annual public demonstration at Queen’s Park, to raise awareness about issues that continue to face the Lyme disease community.

  • Queen’s Park (south lawn)
  • Monday September 27th
  • 12 noon until 1:00 p.m.

A message from the GTA Lyme support group:

The Toronto event will take place right in front of the Ontario Legislature. Please come early and bring along a packed lunch if you would like to join us for a picnic on the beautiful Legislature grounds following the festivities. We are honoured this year to welcome CanLyme president Jim Wilson to our event, in addition to MPP France Gelinas and lawyer Paul Haefling. Please make sure your MPP is aware and invite them to come and learn more about Lyme issues facing patients throughout Canada. Please put your creative juices to work and bring along some eye-catching posters. Come, be encouraged, and let’s make our voices heard! Let’s keep the momentum building. Visit Lyme Action online for additional information and any last minute announcements.

Lyme Disease in the Vancouver Sun

The media deserves credit when it is due. Lyme disease is an increasing health problem affecting thousands of Canadians, and many many more of our U.S. neighbours to the south. Over the past year, the number of informed reports has been dramatically increasing, and as a result, the public are beginning to develop an awareness. Also, medical groups are either beginning to squirm and take the issue of lyme disease a little more seriously, or they are lashing out. Both are a sign of increasing public pressure and progress.

Earlier this week Erin Ellis of the Vancouver Sun wrote an article that is one of the best I have read on lyme disease. It is balanced, and presents a story that largely resonates with what I have been through, and the frustrations I have felt trying to grab the attention of someone in the medical profession who would listen and act to help me. Earlier in the summer, the Toronto Star also published a good article, as have more and more mainstream news media outlets.

The next barrier is our federal and provincial politicians, the Public Health Agency of Canada and the Provincial Ministries of Health. Politicians in British Columbia have made some progress, but the rest are largely far behind. Let’s all work together to get the major issues around testing sorted out, so more and more people have a chance!