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Fragile

Wednesday, February 15, 2017

I’m in a mood today. I’m trying to close a real estate deal. I can’t tell if my agent is fighting as hard for me as I expect him to, and I’m trying not to get angry at myself for not realizing a mistake yesterday that has impacted the deal.

Real estate transactions, just like so many other things in life are fragile.

My personal plans for the future have also felt fragile for the last several months. I decided to go back on antibiotics after years of having complete control over my Lyme treatment (through the coil machine) for over 5 years. The drugs zapped me of my energy, my desire to get out of bed, my ability to imagine a future, even my ability to think. So for 6 weeks of iv doxycycline, my future seemed fragile. It seemed that the reason for taking the drugs, to quiet down the infections and give myself a chance to try to get pregnant, was foolish. I could barely stand, walk, talk, eat, sleep, knit, read, watch tv, by the end of the third week. Adding a child to the mix seemed like the worst idea possible. I couldn’t remember a time when I felt any better than I did in the moment, and I couldn’t imagine a time when I would stop feeling so bad.

Then the PICC (peripherally inserted central catheter) stopped working. I used the PICC, a tube that went from a hole in my arm to a vein near my heart, to deliver doxycycline and other drugs. When it stopped allowing fluid to enter, I discovered that PICCs are also fragile. I had to have it removed because the end in my chest was no longer near my heart. Within days, my mind cleared up.

I had a chance to decide whether I wanted to continue with antibiotics. At first, I was ready to give it all up and go back to my trusty coil machine. My husband gave me plenty of space to talk through my options without putting any pressure on me to decide. It was exactly the right kind of support for him to give me.  Then I called my sister. She gave me the kind of perspective I cherish. She reminded me that this time last year, I thought I was near the end of these illnesses. I felt quite well. All I wanted was to have a baby and begin working. After a hard year, those dreams seemed out of reach, but my sister said that if I got myself well again using the coil machine, I’d be six months or two years older and kicking myself for not seeing things through with the antibiotics, because my dreams and goals would be just out of reach again.

So I pulled myself together, got another PICC and suffered through some more doxycycline. Then my digestive tract stopped working altogether. I could barely eat and what I did get in came out within the hour. I had to stop the drug. It turns out my digestive tract is fragile, too.

I called my doctor, took another week off all drugs, and this time came up with a new combination that I tolerate better. The first week on it was hard. I’m now a few days into the second week. The herx is the same as it was when I was coiling this time last year (kidneys, insomnia, night sweats, headaches). More importantly, I’ve been able to think and feel and not spend all my time on the couch in a daze. Thus, I’m finally able to write a blog and get back to living.

This is not to say that I’m as well as I was last February, I’m still struggling on all the drugs and have infection symptoms on top of the herxes. However, when I was well last May, and I was sure I’d be well this February, I signed up for a writers conference. The day after I stopped the doxycycline for the last time, I discovered that the conference was in three weeks (tomorrow compared to the day I’m writing this post).

That’s when I discovered how fragile my ego is. I had plans, last May, plans that didn’t include two relapses in the summer and autumn, plans to type up and revise a science fiction novel I’d completed using pen and paper. I expected to have a draft in case I connected with an agent or editor at the conference. I almost signed up for the opportunity to pitch my book to several agents and editors at the conference. But I decided against it, hoping I might have a deal already.

It’s humorous now, looking back three weeks when I felt like a fraud for thinking I could ever get anything finished, never mind published. In the intervening time, I’ve gotten well enough to attend at least part of the conference, assuming I sleep in and leave early each day. I’ll have to do the iv infusions in the morning and evening while I’m enjoying some quiet time. I’m planning my food and supplements carefully.

Yesterday, I spent several hours designing business cards to print at home. To say I’m satisfied with how they came out would be missing the point. As I wrote the cards, I kept changing the content, wanting to include something beyond my contact information. I decided to write down the type of literature of which I have drafts on my computer (or have printed limited runs for my family). I was able to see that despite my difficulties, I have composed several short stories, kids stories, a sci-fi novel, part of a memoir, part of a how-to book (about coil machines, of course), and this blog. The process helped me to rebuild my fragile ego in preparation for my first professional activity since I was felled by Lyme Disease in February 2007.

There’s always more, of course. Although I’ve primarily focused this blog on the coil machine, I have two things I’m working on. One is a resource on the practicalities of PICC lines and long-term antibiotics. The other is about environmental training, a piece of the puzzle that is overlooked for chronic infections and autoimmune disorders.

For now, I’m headed to a conference, planning out the next part of my treatment, and coming up with new ideas for how to live better with Lyme Disease.

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