Can’t Read the Handwriting

Can't Read the Handwriting
Can’t. Or won’t. So the ridiculous situation with Lyme folk is that they are constantly trying to learn about the disease at a time when it’s really challenging to learn anything. Reading comprehension is affected. Memory is affected. And then there is the small matter of not having degrees in medicine, biochemistry, or biology….

When I manage to put my sense of humor to work on it, I picture my synapses tripping over themselves like the Three Stooges, or information just slipping by too quickly, like Lucy’s chocolates on the conveyor. I recognize that I’ve read this research paper before, but only after an hour of trying to read it again. No idea where I stored it or what I thought about it or whether I’ve brought it up with my docs.

Docs don’t like to give up when they think you can beat something. And that’s the attitude of my docs, bless their hearts. So I keep fighting, though my ammo is dwindling.

As the ammo supplies wane, I’m starting to read the clues — we know so little about this disease and its late manifestations, and there isn’t a whole lot of emphasis on curing the late disease. The focus is, as really it should be, on eradicating it early. Because that’s really when it’s treatable.

What I think I’ve been unable or unwilling to see in the writing on the wall is that we are unlikely to have this disease nailed in my lifetime. That’s not a dramatic statement. That just puts people like me in the boat with all the folks with the various autoimmune diseases, about which we really know very little.

Except we don’t seem to know how to fix late Lyme, or manage the symptoms or throw it into remission. And it seems if you treat it like Lupus, say, you could make it a lot worse.

Meantime, I’m relistening to Full Catastrophe Living by Jon Kabat Zinn, and reading How to Be Sick, by Toni Bernhard a useful book by a law professor/buddhist-turned bedridden person. And that’s very helpful. It has me focused on what’s very right about my life, which is a lot. A real whole lot. It helps with the fear and the anxiety of finally reading the handwriting on the wall.

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9 thoughts on “Can’t Read the Handwriting

  1. Although it simply pisses me off that you are in this state, I completely enjoy your blog both for its information and its personal expression.

  2. I wish you (me and all lymies) the best. Can’t type must more, brain thing going on. Focus on healing or remission. I send lots of love to you.

  3. Smiling because I do have a degree in healthcare: BSN, RN, summa. But it was of no help for quite awhile. Got the degreet with one hand tied behind my back because during my schooling I lost the ability to learn by seeing and hearing. Had to read textbooks, record lectures/transcribe them, and study for endless hours. It drew a lot of flack from my classmates. One blurted out in class, “Get a life!” Thirteen years later, after ten years of not being able to work, I finally got the correct diagnosis. That was about 18 months ago. I have only been well enough to pursue any solid information sources on my own for about two months. Finally I have the ability to retain information most of the time. Here’s hoping it lasts and lasts!

    • I know a young woman, an MIT student who went from fairly easy absorption, to having to attend lectures 3 times, study as hard as you did, to dropping out of school. So painful to watch. But she’s dogged. Goes back when she feels better, comes home when it flares again, then back. I so admire that kind of persistence.

  4. I love your blog!! Thanks for sharing your experiences. Unfortunately, the only management there is for us is antibiotics. Of course there are other supportive therapies, but antibiotics have worked for some lyme patients with chronic Lyme. They worked for me, of course after 3 years in bed hooked up to a IV…but I have my life back:) With all my heart I hope you get yours back too. I share your blog with any Lyme patient that I know that needs a good laugh, as your so witty and creative.
    Thanks again for sharing!

    • Thanks, Jennifer. Thanks for giving me a boost. We had a lot of false starts, working to find meds I could tolerate, so I figure I’ve been really fighting this stuff for only about one full year of uninterrupted therapy. And I’m already impatient. So ready to be done with the IV and the pain. If patience could be offered in pill or IV form, I’d be taking that too.

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