Seriousy. No, seriously. I’m getting serious, which you know, I never do.

The gala was a huge success, as is, (ALREADY!) the work of the new Lyme Research alliance, bringing together Lyme research organizations, their talents and their work, and all of that getting maried to MONEY, which makes research go ’round, it must be said.

We need to stop yelling at the people who just won’t help, and help ourselves. Old advice, always works.

How about telling the people you care, and people who are affected by your disease, and other Lymies, and get on board, give until it hurts:

http://www.lymeresearchalliance.org

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! 

Acknowledgements

Acknowledgements by jujuridl
Acknowledgements, a photo by jujuridl on Flickr.

The very end of the book.

We Lymies, when we tell our stories, always end with the cheery-uppy admonition to “check for ticks!.” To break the gloom.

As if checking for ticks would have made a difference in our cases. I don’t remember the tick that bit me. I remember a hickey on my breast.

My online friend doesn’t remember the one or several ticks on her scalp. Sure, remembers pulling a few off, and dozens and dozens off her cat and dog, the guts rubbing into the many cuts she made hulling strawberries.

The nymphs of these ticks, too little to see, the adults, like sesame seeds.

I realize now that I have drawn these tick legs all wrong. Made this bug look more like a beetle. The back legs should be up near the front. But the body is right. It’s body is a vessel. The real ones give a visceral rage to lymies.

I used to be in publishing, and then in marketing, and so I have magnifying loupes around the house.

After diagnosis, when I’d take a tick off my dog or cat, I would trap it under the loupe, take its picture. Or try to. I used my grandfather’s magnifying glass to study them. I still can’t believe an otherwise beautiful insect (I like bugs) could cause so much harm. As opposed to, say, an undecidedly creepy mosquito.

But that’s the case. And my case. And the end of my story for The Sketchbook Project. This is sketchbook (#S96581).

Learn about the project at http://www.sketchbookproject.com, headquartered at the Brooklyn Art Library, where already one person has checked out this book, which sits alongside amazing art by amazing artists.

And if you’re near Brooklyn or any of the tour sites: http://www.sketchbookproject.com/sbp2013, make some time to take a peek at some of those books, will you? You won’t be sorry, and maybe will be inspired to pick up a pencil or pen or some paint to tell your stories.

Thanks for looking.

Family Quixote

Family Quixote by jujuridl
Family Quixote, a photo by jujuridl on Flickr.

I suppose there’s a little subconscious covert operation at work, publishing this Sketchbook Project spread on a Saturday, when almost no one is looking at blogs and Facebook pages.

But here it is, getting close to the last post, and really the most depressing. I have no data at all to support my observations, because we just don’t know. I see
bloggers
and Lyme activists and newspaper stories about patients giving up and taking their own lives, or dying of various complications. There are some attempts to discover the causes of death of people with Lyme, but I understand that “Lyme Disease” is rarely listed as cause of death in the official papers, so those data points are lost.

Instead we get mitral valve failure, suicide, Alzheimers and other forms of dementia, meningitis, encephalopathy — almost any neurological disease — pulmonary failure, and all of the differential (mis-) diagnoses that were really Lyme — Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease), Parkinson’s Disease, Lupus and other autoimmune diseases, including various rheumatic arthropathies.

This list is a tip of the causes of death that will be put on death certificates, and entered into data about causes of death of these various diseases, but it is very rare that Lyme Disease is included in any of these Cause of Death descriptions. That’s why we hear that Lyme is “rarely fatal.”

It is fatal. Absolutely it is. Either because people stop living real lives and decide to take their own rather than stay in a painful limbo, with no hope of a cure, pursuing treatments that will drain their family’s finances, or because their illness progresses to death.

 

Dublin Molly & Me

Dublin Molly & Me by jujuridl
Dublin Molly & Me, a photo by jujuridl on Flickr.

This is the whiney post that declares I AM NOT A WHINER!!!

“Whiner” is a word med professionals use to describe people who overreact to their illnesses. I was labeled a whiner for a long time until the diagnosis came down.

For various reasons, involving more luck than effort, that word has been scrubbed from the vocab of my caregivers. Unless I go to an emergency room, that is.

Most Lymies are not so lucky. Still looking for some medical professional to take their illness seriously.

But I like to let my caregivers know I used to be a supremely healthy person, exercised, dieted — over-dieted, like most of the women of my generation. Over-exercised to keep that weight off, running farther and farther, sometimes dodging into places where the deer bedded down the grasses to pee in privacy, then continued my run. 10 miles, 15 miles, 20 miles.

Now, when I see runners and bikers go by my house, I think unkind, terribly mean thoughts, mainly along the lines of, “Why me? Why not you?” (But actually I use two words, I can’t use on a family-oriented blog.)

I want to go back to Dublin and run that wee race again. That was my goal three years ago. The goal seems farther away all the time.

This is the case for thousands and thousands, an epidemic of people with tick-borne diseases. A cure that seemed within weeks at diagnosis stays just beyond her grasp, then becomes a dream.

And with that dream of a cure comes the dream of regaining something lost. Something he wants back, very, very badly.