Monday, October 31, 2011

Meeting the Lyme warriors in Toronto

What a rush this weekend was! Being able to see, hear, meet, talk to and just observe so many people who have become familiar to me through research about this disease we are fighting, either as patients or as health care givers or family members, gave me energy to fly! Of course, as always, then the crash happens and I woke up this morning with infection in both eyes. And fatigue dragging my feet. But it was so worth it! I'm busy uploading some of the pictures taken this weekend. Below is a collage of some of the pictures that meant so much. I can't pick one that meant more than another, but as a Lymie who have seen the suffering of Mandy Hughes on the film, "Under our Skin", it was particularly uplifting to see her at the conference, and to talk briefly with her and with her mother.

Too many to name, but the pictures are being uploaded and captioned to Picasaweb. You can see them either from HERE  .... OR if you have a Gmail account and wish to comment on some of the pictures, please go directly to the ALBUM. Hopefully the rest of the pictures will be uploaded today, October 31.

Thank you, to everyone who came and who give us, the patients, so much support, in many different ways!

A very special thanks to my friend Anne, who dragged me along to the conference. Part of the Lyme Brain is that I find it hard to make decisions or to plan ahead. Anne would have none of that. Thank you!!

Monday, October 24, 2011

Meeting dr. Murakami

This weekend, Oct. 28 - 30, the ILADS Lyme Disease Conference will be held in Toronto. It is geared towards doctors, medical students, nurses, and health care practitioners. Several speakers will be talking, answering questions, and getting the desperately needed information out. Please pray with me that it will help push this scorned disease even more on the foreground? I'm not pretending that other diseases and conditions are less than Lyme, only that the fact of no available treatment in Canada, the lack of testing and the serious lack of support for doctors and patients must end or be changed.

ILADS Lyme Disease Conference

On Saturday night, a small group of us hope to meet with dr. Ernie Murakami - seen as a hero by many, yet pushed out of practice in BC.
Video link and more information about him can be found HERE, a CBC link from 2008.
Picture from the video is below. 

BC doctor urged to retire because of zealous approach to Lyme disease

Sunday, October 23, 2011

Normal isn't

Things turned out rather difficult today. We were at work for too long after the servers were hacked again, without lunch, other than a banana and a few strawberries. By 4:00 pm, I told him I felt nauseous. Within minutes, my body temperature plummeted and I became totally disjointed, confused, weak and on the verge of collapse. Arno dragged me to Tim Hortons and made me eat some minestrone soup, which was the "safest" item they had within the severely restricted diet, and the quickest warm meal he could think of to get into me.

Later he said something to the effect of "a normal person's body wouldn't go into shock that fast" --- and that literally rocked my world. No longer normal, and I kid myself by pretending.

Friday, October 21, 2011

Dr. Eva Sapi - Bacterial Biofilms and Lyme Disease

Dr Sapi will be at the ILADS conference in Toronto at the end of the month. I'm still trying to understand the biofilm idea. Brain not playing along!

Added after the Lyme Conference:
I had the chance to meet and talk to Dr. Sapi, and to personally thank her for the work she is doing! Also attended her lecture. She happily agreed to pose for a picture:

More pictures from the Lyme Conference in Toronto are

Tuesday, October 18, 2011

Brain healing

Yesterday morning on the way to work, I stopped at a spot with a wetland, that always fascinates me with changing colours, sometimes reflections, sometimes gunk covering the water - always something different. Took the picture below, among the 40 or so others that were squeezed off. Even though the Fall colours are fading, the reflection in the perfectly smooth water was so pretty! A camera can just not capture every nuance of the play of light and dark that the eye can see.

Then, driving home later, there was a talk on the radio about taking a short walk in a wooded area or park during the work day. Seems the part of the brain that is needed for sharp concentration, is healed while the other part of the brain that is nourished by nature, takes over for a few minutes. What a blessing to have something living and green somewhere, to look at, enjoy and to find healing at the same time!

I had the privilege to speak to a group of women last night about Lyme disease, the lack of treatment in Canada, the fact that testing is inadequate and that doctors are not equipped to diagnose the early stages. Those who try to help, are often pushed out by other doctors, for treating "a disease which doesn't exist in Canada". Mind-boggling.

We need more publicity about the early stages and the fact that Lyme disease is treatable if caught early; we need doctors to be aware of the early symptoms; more information must be posted everywhere, since knowledge is power; better and more accurate tests are desperately needed; and doctors and patients who are dealing with Lyme disease and the co-infections need to be protected from ignorant people who still deny it exists.

Let's hope and pray the ILADS* Conference in Toronto will be attended by many doctors, nurses, medical students and others in the position to constantly help get the word out, and to prevent more people getting sick and then being set adrift with no treatment!
(*International Lyme and Associated Diseases Society)

Thursday, October 13, 2011

Through the window today

This is not supposed to be a prize-winning picture, and just taken with the Blackberry, but the view of the tree through my window never fails to get some emotion going.
When the new apartments (background) were being built, I begged the contractors to leave my tree alone. Since it wasn't really in the way, they didn't touch it. Every season the tree wears a different attitude, it seems.
Right now, the fallen leaves around seem to be soft, like a quilt of warm memories.

And a quote comes to mind, since several people dropped by today to comment on the information session I did yesterday about Lyme Disease:
"Healing does not mean going back to the way things were before, but rather allowing what is now to move us closer to God." Ram Dass (born April, 1931)

Linking up with this or that Thursday

Wednesday, October 12, 2011

Wordless Wednesday: Nature's Fall Salad

Lyme disease is a thief.

It has stolen so much of life, of our family, of the essence that I thought of as ME.

Creativity used to come easy and as natural as breathing. Now it is a struggle, as if there are walls everywhere between brain, eyes, hands and inspiration. If it doesn't hit me in the head -- like an apple falling off a tree while others are being picked, and landing inside a large dandelion --- I have to go looking for inspiration. But here it is. The apple dropped into the soft green leaves, and it is like a hand is gently holding the apple aloft, showing off the deep colours, the gloss of Fall sunlight, the bounty of nature around us.

And I'm deeply thankful to be part of life, of finding joy in unexpected places, of getting on with this fight against this miserable disease which "doesn't exist in Canada". My job is to hold it aloft, to warn others, to make sure the voices are never silenced, and help others protect themselves and loved ones before it is too late.

Ask me about Lyme disease. Chances are I might know more than your doctor does. Because my life depends on it.
Enjoy this Wednesday!

Add your Wordless Wednesday - it is a joy to read them!

Friday, October 07, 2011

Wordless Wednesday: Fractured heel

(Terrible cell phone picture ...) Not exactly wordless, but it DID happen on Wednesday! Son alone at work, waiting for his lift. Son, being male, not listening to good advice not to go on the ladder to move certain beams around. Son fell down. Lots of annoyed yelling at himself (I was told). Discovered no ice. More yelling. Came home, can't put weight on the foot and thigh in pain as well. Being male, wouldn't be taken to be seen by a doctor. Mom insists there's a fracture. Next morning, ER stop with Mom taking no nonsense. Two hours later, splint on, crutches in place, fracture confirmed. Could have been worse, though! Picture shows son with me at my second job, in wheelchair, crutches waiting, leg propped up, and working remotely from my laptop. Going to be an interesting Canadian Thanksgiving this weekend!

Other stories to read:

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