Tuesday, March 27, 2012

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.

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