Why Can’t I Get Better?

Reading Dr. Richard Horowitz’ book. Or starting again and over to read Horowitz’ book.

Love Dr. Bodhisattva, but I desperately wish for an Experienced Patient’s Manual, leaving out the stuff about how he became a lyme doc (so glad he did, of course, but we have only so much time in the day before we need to nap, and all of that is erased from our brains), and the stuff about the fight between IDSA and ILADS (good for docs and family members and newbies to read, but we can’t afford to spend any more adrenal function on it than we have to. [She said, feeling the bile rise, heat, and bubble.])

So the manual, in large print, just his new ideas, which ought to be writ in a large book face type, on onionskin, so it’s light enough for our arthritic wrists and hands to hold, its new terms and instructions in 24 point Helvetica Black. A flow chart for patients, so they know what to ask for and when, specifically the meds, doses, duration, where to do their research, who to follow.

Also the joking asides to doctors? Not required in this, thin, thin manual for patients.

Note to anyone writing about Lyme…. same goes to you all. We can’t hold fat books or retain what’s in them, but I bet there are patients with editorial skills who feel well enough to get this done… Trade them for followups, why don’t you?

Just  a thought from a Babeezled, Borrelia’d and Bewildered brain.

Oh! And! New cartoons coming. Scripts are willing, pen is not. Interestingly, as my ability to read more than one sentence at a time comes back, my drawing skills diminish. Not sure if it’s brain function or practice. Quite possibly the latter. But I’ve got stuff started. If only I could remember how I got the images from paper to blog…. That’ll take some sleuthing. I’ll leave a breadcrumb trail next time…

Oh and a post or twenty about entering the land of Medicare. Good god almighty! 

Within the Moment…

My husband, the poet Jack Ridl, who suffers from my Lyme and Babesia, and whatever else, wrote this for all of us tick-borne disease folk:

Within the Moment of Indefinite Suffering

All it takes is a tick. You can be walking
your dog. Your dog can be stopping to
sniff a patch of jewel weed or pausing
to pee on a post surrounded by poison ivy.

You could be watching a swallowtail slowly
lifting and settling its wings while resting on
a swatch of crown vetch. The sun could be
lost behind clouds, clustered in a cumulous

mound of white or sinister gray, the moon
could be full, waning, new, the stars moving
across their scrim of deep space, everything
still benign in its revolving threat. You

could be sweeping the walk, passing under
the pergola draped in wisteria, wedding veil,
honeysuckle, or merely sitting on the bench
beside the brook out back. Or taking a path

through the park, joggers steady-stepping, or
walking along the well-worn trail to the pond
at the edge of town where you could be sitting
under the willow, its branches hanging their braids

over your wait for the sunfish to surface. It could all be
beautiful: the day, the light, the breeze bending the tall grass.

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Piebald is the New Black

The hair loss is a steady thing. My Modern Chinese Medicine doc says it’s a by-product of vasculitis, a common Lyme symptom that can crop up anywhere. But even as old hair loses its grip, new hair is coming in. Before long, I’ll have some pretty funky tresses. Meantime exploring the world of volumizing hair products.

Just when I think I’ve got a handle on all the symptoms Lyme is going to give me, I get something new. I think I’m about to have to admit that Western Medicine has done all it can for me. I’ve about spent down their stock of antibiotics, each one bringing on a side-effect that means I have to stop. I’m so close to the finish line, with my brain getting better every day, and my hips and knees and feet downright serviceable over the past week.

Thank god for the herbal protocol. I see that I’ll be putting my money on that horse. Having run out of horses….

Meeting

I’m very good at magical thinking. I like to imagine that all my tissues are healthy, my immune system is intact. Yeah, I might have a little bug or two, but that’s never stopped me before. What’s a few bacteria to a healthy girl like me?

But then some nasty symptom pulls me underwater by the ankles, and I have to face facts. My organs are not functioning properly, because they are diseased. I am diseased. The pathogens are traveling freely throughout my body. I can’t do my old job until I finish my new job: getting well. My new identity: Lyme Patient.

Damn! If I had to have a disease, does it really have to be Lyme? Really?

The characters are multiplying in my little comic. I’ve named the little ginger-jar-kitty-thing Chachky, my highly symptomatic Lymie. Cute, but not functional. Just another thing you have to dust. Nebby is a nervous little warbler with a nasty habit of telling the truth when you don’t want to hear it. Nebby lacks empathy. An itty bitty psychopath. Then there’s the buck. The buck. Hmmm… What about him?