On the Antibiotic Wagon

I hope everyone is staying cool. Temperatures here have been raging at around 105 degrees and that is the REAL temperature, not the heat index which is even higher. For the love of God, it is hot. Between noon and about 7 p.m., it is way too hot for me to go outside. The heat just completely zaps me.

I had my doctor visit a few weeks ago. Things seem to be pretty status quo in that my numbers are all hovering basically at the same place as in June. Here’s where I stand right now: CD57 – 33, Lyme bands 23 and 41 showing IGG and band 41 IGM, EBV is reactivated; it had been inactive since April, Mycoplasma finally under control, and HHV6 active again. In all honesty, this is for the most part where I was at the beginning of last summer. What I expected was my doc would put me on another course of antibiotics since I have been on amoxicillin for about 5 months now. Instead, on the patient lab VM, she said we were going to take a break from the antibiotics.

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It freaked me out. I listened to the VM about 3 times. My brain is like, Are you Sure?!? But there are no certainties with Lyme now, are there. I was so sick when I was finally diagnosed and I have not had more than a day or two break from being on antibiotics in 27 months. In in those 27 months, I have made some significant strides. So, yes, it is freaking me out a bit! I know I need a break, my body needs a break, but I feel like I have lost my walking stick. It’s only been 3 days without meds, and I keep analyzing myself, waiting for new symptoms or for the flu-like monster to rear its ugly head. It’s hard not to worry.

Also, right now is about the most stressful time for me at my job, besides at the end of the school year. In a mere 10 days, school is up and running and so am I. I’m struggling between being happy to return to the classroom after a nice summer break and the dread of becoming severely ill. While I know it is not a good thing to worry and stress, it’s there in the back of my mind, the What If? Meditation, and I use that term very lightly as I am just dipping my toe into that arena, is helping some. The breathing combined with focusing has helped me clear my mind some. Like one of the mantras in AA, I’m taking it One Day at a Time. Or one hour at a time. It’s just a challenge for sure.

Anyway, I’m on the wagon, and we’ll see how it goes. My next doctor visit is early October. By then, the weather will still be hot, but the evenings and mornings will be cool, school will be in full swing and hopefully, my immune system will have stepped up and kicked some butt.

For those of you not on antibiotics, or taking a break from them, any suggestions on how I can support my immune system right now? I appreciate any and all recommendations.

Till next time, friends, -B

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Book Review: BETWEEN THE WORLD AND ME

BookPeople

Between the World and Me by Ta-Nehisi Coates
Reviewed by Bethany

In Ralph Ellison’s 1952 novel Invisible Man, a nameless African-American protagonist tells us that “there are few things in the world as dangerous as sleepwalkers.” These words were called to mind as I devoured Ta-Nehisi Coates’ mesmerizing blend of memoir, history, and cultural criticism, Between the World and Me. Coates’ study of institutionalized racism and its impact on the psyches of black Americans riffs on Ellison’s sleep metaphor, extending it to locate the danger of the sleepers in the fact that they are dreaming the American Dream.

This dream is closed to blacks. In Coates’ words, it “has never been an option because the Dream rests on our backs, the bedding made from our bodies.” As a work of history, Between the World and Me explains the past and persisting conditions that motivate this claim. Coates writes…

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Who am I?

I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.

An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.

Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.

It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.

Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”

Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience.  “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.

How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?

Who am I?

Who am I?

 

Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.

Take care Warriors.

Until next time – B

**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.