Hubris

Right. So. It’s been awhile since I updated. Not that I haven’t drawn, but haven’t had the sauce to sit and scan and correct and upload.

What I’ve learned in the past 6 weeks: Lyme, like any auto-immune disease, can be exacerbated by the simplest things. A cold, for instance. I was going along, having a lovely January, or beginning of January, on the steam of an entire 5 weeks without the headaches that make me not want to wake up.

I began to toss around the word, “cure.” I climbed stairs without pain or going all black around the edges. I swam, not just laps, but numbers of laps, with just some twinges in my shoulders. One day, I stood in front of my husband and announced I had no pain in my body, anywhere. Nothing. Not a stitch, burn, stab, bruise, ache, nothing. Nothing. I posted that on Facebook, and the next day went out in the world and caught a cold.

By the end of the cold I spent days in bed in 8 kinds of pain, a fever, nausea, the whole kaboodle. There have been some med changes. I stopped tolerating an antibiotic, and so set it aside for a couple of weeks. Maybe that was my downfall. I’m really not sure.

Some new symptoms and worsening old ones. I have a kind of quivering on my right side, every couple of minutes. No one can see anything but goosebumps when it happens, but it feels to me as if I were doing the horseflesh thing, shaking off flies. And a new weird sunburn sensation, as if patches of my skin were sunburned almost to blister-stage. I keep looking, thinking I’ll see or feel the burn with my hand, but nothing is there. This migrates, wakes me up, annoys the crap out of me. And my heart. It just races and races. And it hurts. We don’t have bad hearts in my family. We don’t know the first thing about it. The language of heart problems is one I just really don’t want to learn. I know the word tachycardia now.

But! January gave me a clear picture of possibility. It’s possible to recover. It’s possible that I won’t have to walk like a duck in braces forever. It’s possible I’ll be swimming again.

Much conferring with all my docs about this. I’ll head to New York for the one-year-treatment-checkup with the Lyme specialist. I’ll meet a cardiologist with experience treating late-disseminated-Lyme folk with heart symptoms.

Also, meantime, I’m working on the storyline for a complete comic about my lyme experience. Working on characterizing the antagonists: Borrelia, Babesia, Ehrlichia. Those are my three beasts. The voices in my head, Nebby and Chachky, I think will remain. I think so. We’ll see. I will start posting all of my working sketches in rough form and photographed through my phone so that I don’t fuss quite so much about scans and resolution and touchups while I get the ideas out.

And some of these images I’ll put on stuff and put up for sale to raise money for research and for my own survival. This damned disease has sucked the yolk out of my nest egg. But meanwhile, it’s all CC licensed folks. Feel free to print, share, repost. Just point back to the url when you do: lymejello.com.

Oh! Also, got tired of losing my hair and watching it get thinner and thinner, so I just whacked it off. Thinking about whether to show that in the comics or not… No decision yet.

Stay tuned…

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5 thoughts on “Hubris

  1. oh man. reading you is like reading my own story!! i’m really struggling with the hair loss right now. my hair was my crowning glory. bright, shiny, wavy golden strawberry blonde. as a child, ppl would stop me on the street to compliment my hair!! oh the indignity. they don’t do THAT anymore. sigh. the plaquenil adds insult to injury. i’m on massive doses of abx, orally, now. hopefully, i only have to do it for 6 months. but my CD 57K is only at 24, so who knows… loving your stuff girlie!!

    • Here’s to strawberry blonde of any amount! Right, the plaquenil definitely upped the hair loss. Along with hair loss, my fingernails and toenails went all wonky. Thin as paper with the “half-and-half” markings. But I’ve been on really heavy IV abx since April, and my nails are recovering. So I’m hoping my hair is too, but I’ve been keeping it short so I don’t have to think about it.

  2. So true. SO true. I’m about six years into treatment, after seventeen years of not knowing what was wrong. My last IV treatment was about… six months ago? And… yeah, the hair thing. They told me that it was normal, after a pregnancy. NOt a normal amount, even though it was “normal post pregnancy.” I finally talked them into testing my thyroid levels, got started on armour… voila- hair stopped nearly immediately. So… yeah. They just don’t listen, and we’re so weak, it’s hard to force the issue. It is brave to tell your story… it is brave tog et up in the morning. Keep going. It’s always hard, but a someone who has at least part of their brain back, however temporarily, and who has two children in public school (both have Lyme, both OFTEN ill or carrying something home) and who is caring for a baby today on MY birthday, it is STILL worth it. It is always worth it. It only gets unbearable if you give up and refuse to go onward…

    Tamar– lymeade.blogspot.com

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