Well, all of that below was true of 2010-2014. But today, I’m so happy to say, my world has changed quite a bit. There are mobility devices gathering dust in my house. A ramp useful to friends, but I take the stairs.
After working with an amazing and well-known infectious disease doctor in New York… The one upriver? Who treats, talks and writes about Multiple Systemic Infectious Disease Syndrome? And taking the time, under his care and the care of his office, to peel the onion that was my illness… Then taking his referral to a neurologist, who cleaned up neurological auto-immunities (they haven’t recurred since treatment almost two years ago, which means, I’m told, they may well stay gone), and spending these past two years bringing my body back online, neuron by neuron, muscle by muscle. Oh, and certainly sticking to that anti-inflammatory diet… And, of course, peeling away meds whose side effects had steep cognitive banks (I’m looking at you, Lyrica)…
After all of that, I’m left with just a few deficits, but nothing, at my age and looking over my shoulder, that I would ever complain about. Except the cost to my family and friends. I can’t erase the past several years, but I’m going to work to make up for them. Just not yet sure how I’m going to do that. I’m working on what the next productive chapter will be. Exploring.
Meanwhile, I’ve let this blog go stale. But have kept art therapy in my life. Learning to really see the world by sketching, drawing, and painting your life is a healing thing all by itself. I can’t recommend it enough.
Lyme warriors, Babesia babies, my heart remains with you/us. Just wanted you to know there is hope. It really can get better. A great deal better.
I’m Julie Ridl, a writer and blogger and storyteller. I’ve grown older, if not up, with the internet, playing here from some time before CompuServe to today, sometimes helping people build their sites, and sometimes tending to my own.
My present is bounded by Neuroborreliosis, the infectious disease that comes from an untended Lyme infection. That is, I did not seek proper care when I was infected, or perhaps re-infected, and the bacteriae introduced by some long forgotten tick bite(s) had been calling my body home for many years before they were discovered, in February 2010.
Unfortunately, treatment for this disease is tricky, and individualized, and sometimes our best medicine can do little more than try to achieve a kind of uneasy truce with the bacteria. My response has been at times terrific, but lately thwarted by complications.
As a storyteller and communicator, the central frustration for me (putting aside the physical disabilities for now) is that the infection sometimes affects my ability to read, write, speak, or understand the spoken word. Also my hearing is affected, and my sensitivity to light limits spending time online, considerably. The good news is that the symptoms are not consistent. I have days when I feel great. Days when reading and writing is not very difficult at all.
But on those days when I can’t think straight, I’ve found it helps me to draw. I don’t know why. I’m a knitter, and I thought knitting would tide me over those times, but knitting hurts when the symptoms are flaring. Drawing doesn’t hurt.
Also, graphic novels are somehow, if not easier to follow, then just more pleasant for me, when my mind is mush. It doesn’t frustrate me to stare at a page of images the way it does to reread the same sentence 50 times, trying to decode it.
I am new to drawing. There is much I don’t know about it. But I won’t let that stop me. So this blog will be a place where I can share what I’m thinking as often as I can, in whatever way that I can. I hope it will help others who are dealing with this nasty illness. My humor tends to be dark and snarky, though. And like a lot of people who have lived online a long time, I have a propensity to over-share. For those offended by that sort of thing, let this be my official apology and invitation to ignore it.
Oh, I should say this… I spend on average a third to half of my days in bed, in a quiet, dark room, wearing a mask, trying to sleep through horrible headaches and manage violent nausea. Good days are half about catching up with my life, loving my family, and then there’s a little time to actually produce. I guess what I’m saying is, you’d be better off subscribing to be alerted when I update than checking in every day. I don’t know how often I’ll be able to post.
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