Wednesday, May 08, 2013

Will CARP help?

[ Follow-up posted at the end of this entry ]

Tonight I attended the inaugural meeting for a new chapter for CARP, "the national, non-partisan, non-profit organization committed to advocating for social change that will bring financial security, equitable access to health care and freedom from discrimination for all Canadians as we age."

I was hoping to get some direct contact with some of the advocates of this group - I've been a member for two years or so and always have Zoomerradio on in the car. I believe they have power and they get things done.

After all, there is discrimination against Lyme patients in Canada - we are excluded from basic health care. We don't have financial security, because we have to use savings, take out extra mortgages, borrow money, or make other plans to pay for medication and treatment when our disease has been allowed the run rampant for months or years. We lose jobs which we need to help with money, but which we can't do because the disease wipe us out. If we had the benefit of an early diagnosis, it would not have been a problem. Which also means no equitable access to health care for Lymies in Canada, right?

Karen Sibal, Susan Eng and me at the Brampton CARP chapter 
Susan Eng is the Vice President for Advocacy for CARP and we had a long discussion. She was not sure she could help. I told her I've been talking with Goldhawk a few times and she asked "what more do you want?" I said I want awareness, articles, information, and Libby Znaimer to do little snippets about Lyme Disease spreading through birds and bats, about prevention and tick checks, about the early symptoms, about the fact that not only hunters and campers are exposed. Clearly, the conversations with Goldhawk helped, but not enough, or else the doctors who were sent on "vacation" this year and having to defend themselves for helping patients with Lyme disease, might still have been taking patients.

CARP has some 300,000 members across Canada. More than 50% of those are gardeners, if I remember correctly from the statistics given during the meeting. How many of those are exposed to Lyme disease, without the benefit of advance knowledge and protection, without having a doctor available to help them diagnose and treat if they should be bitten?

Maybe, just maybe, something will come from the meeting tonight. I'll keep trying and pushing and hoping that we might be helped. How many more will have to get sick, lose their health, jobs, family, friends, sanity and self-esteem before there is a strategy to handle this completely treatable disease?

Picture above: Karen Sibal is the chairperson of  the Peel Elder Abuse Prevention Network (PEAPN).

UPDATE: On May 14, CARP's website posted Lyme Disease to their front page! I'm so grateful for the awareness created this way. Read more ... 

A year ago I didn't even think that word. Today, I can claim it.
My Lyme Disease is in Remission. The symptoms are quiet. That does not mean they can't flare up again.

A year ago I had to leave a job because of the damage the disease did to my brain. A year before that I had to use a wheel chair or a walker if I wanted to go out with my family. The year before that, I couldn't walk upstairs, but had to sit and push with my arms.

As you can see, a change did not come overnight. Those Lymies who are battling today, desperate, feeling hopeless -- please believe that your turn will come! Even if the disease came one like a ton of bricks (mine did), or crept up slowly, one day it has to take a back stand if you keep hammering away at it. I firmly believe that although there were days when I didn't believe, wanted to just stay in bed with the covers firmly shutting out light and life.   

To all my friends still battling Lyme Disease: Please believe. Stay strong. Be optimistic. We are all working together to bring change. Those who follow after us, will have it better because we pushed through. 


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