Tuesday, December 28, 2010

0 Dear fuzzy bunny letter

Dear fuzzy bunny,


Yes, that would be you.

Please know that as cute as you are and as much as I appreciate it that one of my social networking friends was wishing me well and put you on my support group wall, you just don't understand.

Yes, I know you, and know the intentions behind your being posted - to cheer me up after a hard day (week? month? year?) of feeling lousy - but to be totally honest? Fail.

What I really need is for there to be a safe place for my frustrations to be aired, and for some well-reasoned plan to improve the life of many patients to be put into effect.

Just so you know, I was really happy when I got my first fuzzy bunny years ago. I was new to having Lyme then, but I thought a few months into it was already a bit too long to have a flu plus mono and arthritis combined. And I was confused, and so glad that I had your round little face to look at in the middle of a 2 a.m. Herxheimer reaction. So relieved to know someone was on the other side of the country who was going through the same experience I was and understood the pain, the isolation, the rejection, and the misunderstanding I was enduring.

But now, it's been years of the same thing. More bunnies than I can count. They kept multiplying, like the denialists. And they didn't help me with my anger and frustration.

Life has been a rollercoaster full of doctors appointments and medical tests, research publications and blogs, networking with people I've never known and even never thought I'd know, and enduring long stretches of pain, insomnia, and grief through it all. It's been time spent trying to understand the system - whatever "the system" is - and how a small committed group of individuals can make a difference. If they can make a difference at all, that is.

But it's also been reflecting on Willy Burgdorfer saying:

"The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing: nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.

There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”

At least my primary physician had the courage to tell me that, and also told me to keep seeing my LLMD because s/he knew what to do with my condition. It was more support from this unpredicted source for which I'm grateful.

And then there's THIS bit Willy said:

"I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients."

Seriously, bunny? If the man who discovered Borrelia burgdorferi said this in an interview and more people still aren't taking notice - including the Chicago Tribune - something is wrong. Really wrong.

Fuzzy bunny, you aren't helping me solve this problem. I like and appreciate being supported just for being me and for being human and having a rough time, but what I really want is help solving this problem.

I don't want three more months of the life I've had to lead with Lyme - let alone 30 years of the same thing.

Fuzzy, if you're going to do something other than look cute, please ask Willy what we should do, since he knows more about it than I do?

Thanks!

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