Thursday, May 7, 2009


The reading spot
Quick update: I seem to be getting hammered by the Plaquenil. Right at the end of week three I developed a poison ivy-like rash on the backs of my hands, arms, and other areas. And the herx! For a day and a half I had every symptom at once. WHAM. My LLMD congratulated me. It seemed incongruous until I realized he's happy because the new meds are stirring things up, proving their usefulness. The Doc mentioned that I'll be on Plaquenil and Biaxin for three more months, and asked if I was interested in moving things along a bit faster by adding Tetracycline back into the mix. It's kind of like asking if you'd jump off a cliff to feel better. Yeah, as long as I live through it. "Bring it on." So, the next month should be um, interesting.

Administrative note: be sure to check out the pictures of the barn, posted by request.

When I first became ill, and during those first horrible six months or so, I kept thinking in terms of "when I get better". As in, "Well, that project is on hold for now. I'll finish it when I get better." "I feel like crap all the time. I just want my life back."

Over time I've come to understand that it's not reasonable to put my life on hold. My life isn't gone. It's just different. Each day is another in my life, regardless of how good or bad I feel, how much or little I can accomplish. How many days (years) am I willing to lose waiting? How much negative energy do I generate by not being content with my situation? By holding anger just beneath the surface at the senseless non-medical lyme-related difficulties caused by people in positions of control that haven't a clue? [ yes, just beneath the surface ]

I still feel bad most of the time. I still can't do very much. I was able to paint some primer on those barn doors, but haven't done anything else for a week because of pain. I was able to install a new fan/light in the bathroom ceiling, but what would normally take an afternoon took a month, a little bit at a time, and I still had to call an electrician at the end because I got lyme-confused over the wiring and feared burning my house down.

The smell of spring
No matter how I feel, I still take my dog for a short walk every day at the farm across the road. It's good for both of us. We especially enjoy this time of year, not too hot, and Stewart likes to eat the alfalfa shoots in the hay field.

On particularly bad days I sequester myself deep in the house, windows closed for quiet, blinds down against the bright sunlight. But most days I'm able to tolerate at least an hour or so in the garden, sitting and reading or writing under the apple tree, or next to the pond waterfall watching the fish.

Most days I can accomplish something, no matter how small. Sometimes it's just making a meal. On better days I dream up projects - brand new ideas, well outside the gray box that is lyme. I plan them knowing full well that I probably won't feel this good for long. I'm careful not to start something big that actually needs to move along to completion. Instead I try to break up tasks into tiny bits, and do what to most folks would look like nothing, and to me is meaningful work, for which I am grateful.


Renee said...

Love the photo of the lilacs. Such vivid colors. I totally relate to your waiting to improve enough to really be active. It seems endless...but there are glimmers of hope!
I enjoy your blog.

Naomi said...

Hey Joe!

The barn doors look great! I am getting hammered by the plaquenil as well, in my own special way. It sure is nasty stuff. I'm glad at least you are finding some peace and moments of clarity here and there.