Well, crap. It’s all so confusing.
Saw my doctor. Still no idea why we stopped IV antibiotics when we did, but now he’s got a plan with 3 new antibiotics (oral this time), and agrees with my idea (I think) of going to a specialist in Maryland. Going after not just the Borellia this time, but also the Babesia again. I’ve been warned I’ll get more Herxheimer reactions with these new meds. My current state of not-as-bad-but-still-not-symptom-free makes both my doctor and me ask: what’s worked? what hasn’t? what’s causing (fill in the blank) now?
My ears hurt again. I’m dizzy as all get-out today. Guts and pelvic pain are annoying.
Keep getting questions and comments about Lyme connected to:
Showers making a body feel worse –http://www.tiredoflyme.com/feeling-worse-after-a-shower-or-bath.html#.VEEptyJ4pQ5 Well, if a shower or bath makes me feel worse, then…how do I test that? Avoid bathing for a week to feel better? Hmm..
Is MS caused by Lyme? -well, I think so, as well as Fibromyalgia, ALS, Alzheimer’s and lots of other things. But I’m a bit of a whacko now, who sees the world through Lyme-colored glasses, and always will. And I agree with those who wonder if the Ebola crisis will illuminate the darkness of the CDC –who is practically the enemy of Lyme patients and doctors, and is not a caring disease-controlling benevolent entity at all.
In the end, though, what’s my fight? Lyme? Lyme what? recovery? advocacy? awareness? treatment? diagnosis? support? Well, sure. But… I have to choose carefully how far I take that. As my allegiance lies deeper, broader. I work in ministry with persons with disabilities. So, I see the world through those lenses as well. Puzzle-piece lenses (find out from www.CLCnetwork.org what I mean). And bigger than earthly disabilities, I see that a spiritual disability is the most detrimental of all –far beyond any physical, neurological, cognitive or psychological impairment.
So I read “Jesus Today” by Sarah Young, of Australia. Also has Lyme disease. Together we are walking in hope.
I pray for my kids, and ache to do better at parenting them. Read things like Visionary Parenting. And feel like, ridiculously, the hardest thing to help them gain is empathy for others. Info like “Time Out for Empathetic Development” give me something to go with. If I could stop just yelling at them to stop bickering since it hurts my ears, makes my head spin and I want to just lay down and avoid them.
And what’s up with Foodie-hood? How do I really WANT to eat? and I afford that HOW? to what END? Ending world hunger, fighting the “food industry machine” and it’s destruction to the planet, the ground, the animals, and people it consumes (see “Food, Inc.”), with my own limited resources, energy and abilities.
Causes. The big “WHY?” -feels like the wrong question for me to be asking. “What do You want me to do with this, Lord?” feels more right.
Effects. Every word, action, bite, thought, pill, treatment, job, sound, image, attitude, event, illness, miracle, moment -everything has an effect. Sometimes the effect’s cause is untraceable. Or at least, unknowable. At least, by me. Knowledge may be power, but maybe there is more to life, even more to “victory” than knowing the cause of every effect. Maybe victory has more to do with the cause we’re behind, and knowing how to shape the effect we have. Hmm.