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Valley of Fire

Wednesday, November 20, 2013

Wow. It’s a month since I posted to this blog. I went on vacation on October 25 and thought I would have time to post before I left or at least at some point during the trip. But life doesn’t always work out as planned. My favorite aunt passed away while my husband and I were camping, so we took a detour, by plane, to NYC and went to the funeral. Since we flew back, I’ve been in a funk. I haven’t wanted to write. I haven’t wanted to do much of anything. Plus, as I went back to coiling after the trip, I’ve been feeling worse. Herxing is more disabling, at this point, than the infections themselves. I keep coiling, though, because I want to eradicate the infections rather than let them proliferate again.

Anyway, I wrote two posts for the blog while I was on the road. I wrote one by hand on a picnic table and the other in a motel. Once these are posted, I’ll write an update of what has happened since.

Valley of Fire

Sunday, October 27, 2013

Last night was the first official sleep in a tent on our camping excursion through Nevada, Utah and Colorado. Yesterday we hiked and scrambled up and down rocks at Red Rock Canyon National Conservation Area.

It feels amazing. I never thought that this might be part of my life. When I worked for the union, I couldn’t stop thinking about my projects for long enough to relax and plan this kind of trip. I didn’t know whom to travel with anyway. In the years of being sick and completely disabled, I was trapped in my apartment, left to imagining wisps of an active life, like the dreams of running that had only my body and no landscape.

Our tent and campsite at Valley of Fire shortly after the sun fell behind the rock formations.

Our tent and campsite at Valley of Fire shortly after the sun fell behind the rock formations.

Last night I was in a tent, snuggled in a sleeping bag next to my husband, looking up at the stars through a screen. I sometimes tell Joe that there are many things we can do together that neither of us could do alone. Some of them are the dreams deferred because we lacked the emotional support to take big risks alone. Others are the dreams that hand not and could not be dreamt until the two of us became a “we.” I feel lucky that we found each other and made the decisions required to build the rest of our lives together.

Meanwhile, I’ve been meditating on the idea of being disabled. Little by little I’ve become closer to being able-bodied. A few years ago, even one year ago, even half a year ago, I could not have gone on this trip. Slowly, and occasionally in leaps, I have gained strength, stamina and resilience. I can now have a modified form of an outdoor adventure.

Many people experience short term disabilities when they travel: a case of diarrhea, a twisted ankle, a night of insomnia, or some other physical problem that lasts a few hours or a few days. Then they go back to their normal state and focus on the world around them instead of responding to the physical crisis.

As a person with a chronic, disabling set of infections, I’m always operating on both levels. There is always a physical crisis: IBS that blows up my abdomen giving me constipation followed by copious, urgent stools; pain in my feet, ankles, hips and knees as I walk–pain enough to slow down and modify my movements; pain in all my joints that prevents me from sleeping at night; and hours of profound fatigue that limits my activities and forces me to lie prostrate. When I’m up and about, I look normal but slow. The reality is much different than my appearance.

Resting at Calico Lake before heading back to the Red Rock Canyon parking lot.

Resting at Calico Lake before heading back to the Red Rock Canyon parking lot.

For example, when we climbed up to Calico Tank, every person we met had caught up to us and was passing us. This included elderly-looking people, a person with a brace on one knee, people using  walking sticks, and people who professed to be slow. Each bounded ahead of us at a pace I could not maintain. It took us over three hours to go two and a half miles. I was elated to be able to move at all. I was surprised at some of the boulders I was able to scale and descend. Yet I was acutely aware of my limitations as my feet, ankles, and hips ached.

Food is also contributes to these limitations. I had been eating wheat at home, coiling afterwards, and seeing my body’s reactions continue to diminish (and temporarily disappear after a coiling session). Eating wheat on the road, as I did on Friday on the way to Las Vegas and in the home of the friends I stayed with there, has caused a reaction unmitigated by the bactericidal effects of the coil machine. I’ve triggered a Lyme flare just in time to try more strenuous physical activities.

I think that some of the food sensitivities are minimal in the absence of wheat–malvin and piperin especially–but are magnified when I eat wheat concurrently. I’m hoping all of the inflammation in my gut and joints settles down so I can enjoy the trip.

The week before I left, I had increased the intensity of the Bartonella coiling protocol. The herxes were primarily: constipation (severe), kidney pain (moderate), urinary hesitation (intermittent), burning pain in my lower abdomen (moderate, intermittent), neuropathy in my limbs (tingling, sharp and shooting pains, pins and needles–especially in my feet in the mornings) and light night sweats.

The constipation lightened up after one day of no coiling. The kidney pain is almost gone. The neuropathy is worse. The abdominal pain has changed and is associated with urgent bowels. The night sweats continue. I’m having spells of dizziness and light-headedness.

Ground Squirrel watching me write in my notebook shortly after sunrise.

Ground Squirrel watching me write in my notebook shortly after sunrise.

The final thought this morning, as I sit in a campground in the Valley of Fire State Park in Nevada, is that I believed from the beginning of becoming disabled that it was possible to be completely cured. I believe now that this has changed the course of this illness because my behavior has been based on two ideas: no surrender to the infections and complete cooperation with my body.

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