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Cycles and Progress

Saturday, July 19, 2014

I spent two weeks in Jackson Heights, NY, where I grew up and where I lived for the first five years after Lyme Disease caused me to become disabled. It was great to see my parents and friends. I only saw my mother for a short while. I was staying with my father while she traveled with my sister. Being back in NYC reminded me of what it was like when I lived there and allowed me to see how much progress I’ve made, even in the aftermath of the vaccines.

I returned to Watsonville with a friend from NYC. We hung out for a few days (not enough time to recover from the trip to the East Coast) before heading to Yosemite. This trip to Yosemite is the third early summer trip in three years to the same place. Like many other periodic activities, it gives me an opportunity to observe my long-term progress against the tick-borne infections.

Jackson Heights

Right before I left for Jackson Heights, I made a Babesia breakthrough. Once again I “discovered” that I need to coil my whole body for one minute, plus ten minutes on each of my spleen, liver and chest, at three different times of the day, every day, to overcome the active infection. I keep thinking that there is a lower load of infection with each relapse and that I can get away with coiling less. But that never works. When the load is low, the protozoa reproduce rapidly, thus frequent (three times a day) treatment is needed to stay ahead of their reproductive activities. I hope I’ve made a permanent impression in my memory and I don’t prolong the torture of Babesia when it flares again.

In any case, I was feeling a lot better a few days before my trip. I wasn’t exactly through with the active Babesia infection, but I’d made a lot of headway. Despite the progress, I suffered from a severe migraine on the plane and as we landed. It was so bad that I could barely stand up and walk in the airport. I tried to cut the headache short with a caffeine infusion (a cup of cola) which made it bearable enough to take a taxi home. My husband gave me an intensely painful head massage that night, which broke the migraine. I was fine for several days after that.

Beyond the headache, at the beginning of the trip, most of my symptoms were peripheral, which I read to mean that I had significantly beaten back the Lyme and Bartonella relapses by coiling. I had joint pain in my hands, knees and ribs; my limbs were tired and achy; I had minor digestive upset. As the trip stretched into the second week, I got more tired and irritable. I felt the headaches coming back, and I used caffeine intermittently to cut them short. My bowels started going haywire. One morning, I couldn’t move my arms for several minutes. The following morning, and the rest of the mornings until I got back to Watsonville, my body felt like there was electric static pulsing through it. I knew I needed to go back to coiling, but that had to wait until my return.

On the good side, NY had the kind of weather that previously triggered an attack of tinea versicolor. This was the first time I was in that kind of weather since last August, when I tried using a probiotic approach to getting rid of it. All the other ways I’d tried (from using Selson blue to smothering the area with lavender oil) had been temporary fixes, so that the next time I was in hot weather, the rash came back. Not this time. I was in hot, humid, muggy, soupy weather in New York. No rash. Nothing. Like I’d never had tinea versicolor ever before.

Meanwhile, I had a great time with my dad. The first week, my husband and I took him on several excursions: a baseball game, a Broadway play, a trip to a beach and boardwalk. After my husband left, I took Dad to visit friends and relatives, with the help of his aide, and invited other friends and relatives to visit us. We both got pretty worn out by all the activity. By 7 each night, I was done. I sat with my legs up and crocheted in front of the tv. We watched Murdoch Mysteries until it was time for bed.

This trip was a reversal for me. I was the one who could walk, cook, drive the car, go to the store and all that. It was different. Before I moved, I could barely walk to my parents’ apartment, two blocks away from mine. My mother would get the car and bring it in front of my apartment when we went anywhere. She had primary responsibility for my grocery and cooking needs. Now, not only was I taking care of myself, but I was taking care of my father, who has mobility disabilities–similar to the ones I had. There were funny moments when my body and verbal language was a carbon copy of what my mother says and does. (That never happens when I’m in California!)

It felt freeing, like I’d grown up again, and like I’m past the worst part of these illnesses. Or like I’m on the other side of the big mountain I had to climb. I haven’t reached flat land again, but the air is denser and it’s easier to breathe.

Watsonville

When I returned to Watsonville, I intended to do 3 days of big coiling sessions. Bad idea. My first night home, I coiled Lyme for 14 minutes on my head and spine (7 locations) and Babesia for 10 minutes on my chest. I had a herx by the time I woke up the next morning: spine pain, fatigue, brain fog.

I switched gears, coiling one more time the next day: 21 minutes on Lyme (same locations), Babesia for 10 minutes on my liver, and Bartonella 8 minutes on the back of my head. I didn’t do full coils on my body as originally planned. My new goal was to coil enough to push back the symptoms that had cropped up, but not so much that I would get knocked out from herxing. I didn’t quite manage to achieve either goal, but I came close. The symptoms calmed down, as in no more electric feeling, and I herxed a bit. I needed to spend a day mostly resting after all that coiling. But I wasn’t knocked out. I was able to go on the camping trip.

Yosemite

The camping trip this year was similar in many ways to the previous two years. We stayed at the same car-camping site on Tioga Lake. We spent time walking around Tuolomne Meadow. And, as we did last year, we hiked around Lyell Canyon, and back-packed overnight at May Lake.

I was anticipating some trouble this year. When the trip started, I didn’t feel completely recovered from the vaccinations or from the trip to New York. In addition, I was expecting my period, but wasn’t sure what to expect. As a result of all the possible extra challenges floating around in my mind, I did a better job pacing myself. I cut short one of our walks. I skipped one of the hikes. When I didn’t participate in the activities, I rested. Rest was very helpful in keeping me going for all the days we were there.

Despite my negative anticipation, the trip was easier than in previous years. Last year, the trip was longer. I needed a full day between each day of activity before I could do anything else. This time, I was okay with resting in the evening, sleeping at night, and taking it easy in the morning, but having a full afternoon each day.

The most striking difference was the hike up to May Lake. Last year, the hike was interminable. I didn’t think I would make it to the top. This year, I was prepared for it to go on and on forever. It was a long mile to the lake, up hill the whole time. It was hard. But it wasn’t impossible. We reached the top before I expected. I was tired, but not ready to pass out.

Returning from May Lake, looking out over the valley

Returning from May Lake, looking out over the valley

Once we had unpacked our food into the bear boxes and set up the tents, I went into the lake with my husband. I hadn’t planned on getting in the water. My bathing suit and Tevas were in the car. I figured I’d join him at the water’s edge, only dipping my toes in the water.

The water looked so inviting. Once he was in, I couldn’t resist. I stripped to my underclothes and waded in up to my knees. The rocks were sharp and slippery, so I jumped forward into the freezing water. It was fabulously refreshing. The sun was shining. The nearest people were a distance away. The two of us splashed around a bit, until I got cold. I borrowed his sandals to get out of the water, then threw them back in so he could climb out when he was ready.

I stood in the sunshine. My whole body felt the warm pressure of the sun’s rays. I undressed and dried off. In that moment, I couldn’t help falling in love with my own body. The feelings that overcame me were such a sharp contrast to the years of anger when I couldn’t walk or that my body still runs out of energy before I get to do what I want for the day. It was a reversal from the very intentional body-positive messages I’ve been giving myself as my weight has climbed up and up over the past year. I was exulting in the wonderful feel of the outdoors, the secluded shoreline, the chill of the water and the heat of the sun covering my entire body, this body that carried me up part of a mountain to a beautiful lake and still had some oomph left to swim. Standing there naked, I basked in the reverie.

Then I heard a plop. Two men were fishing about 5 yards away. Oops.

The camping was wonderful. The whole trip was great. In the past two years, I was awed by the natural surroundings, the mountains, the forests, the lakes, the meadows, the streams. In their presence, I was able to transcend my physical struggles, to escape the pain and fatigue and limitations, to engulf myself in the natural wonders. This year, I was in awe of my physical abilities. The beauty that surrounded me was in focus in a different way, as though I no longer had to exempt my mind from my bodily presence to absorb the amazing world around me. I was part of it in a new way. I had to breathe deeply, move slowly, rest often. But even in these movements and rest stops, I was fully there, body and mind. I was no longer preoccupied with whether I could handle being there, and instead, I was actually there.

Sometimes I convince myself that the trips I take with my husband are a distraction from what I need to do to get better, to rebuild a work life, to get over Lyme Disease and the other chronic and tick-borne infections by coiling. But when I’m out there, I feel stronger, I have a clearer view of what I need to do to get to the end. I understand that even though the vaccinations knocked me out for a time, they were an important part of learning about what coiling can do against tick-borne infections. I am able to notice how much stronger I am, compared to how strong I usually feel. I get bolder ideas and come home recharged.

Watsonville

I’ve been back at home since Sunday. Tuesday I drove my friend to the San Francisco airport after we spent the afternoon at Fisherman’s Wharf. Wednesday, I started coiling again. I’m back to coiling for Babesia three times a day, then coiling a full scan of Lyme one day out of three and a full scan of Bartonella on each of the other two days.

Coiling takes a lot of time. My days seem shorter already. I’m back to having a million things I want to do in a day, and find myself accomplishing only a few. The herxes aren’t as bad as I expected, not even as bad as last week. My intestines are in knots. My heart is bothering me a little. I’m tired again. But I’m still up and moving all day.

I’m going for daily walks. I’m experimenting with the ideas of high-intensity interval training (HIIT), including a 30-second active and 30-second rest plan I did for the first time today. I’m less interested in limiting my diet again and more interested in getting my body moving.

Despite the difficulties of the past several months, I can see progress. I’m reaching past the previous progress I’ve made over past year, cutting out supplements, adding foods back to my diet, experimenting with triggering the infections using eggs (my remaining food trigger) and vaccinations. I feel stronger and healthier than in a long time. As I said at the beginning of the post, I’m not off the mountain that these infections represent, but I’m closer to the bottom and it’s gotten much easier to breathe.

Disclaimer

One comment

  1. Great news, Rose! It sounds like insightful and healing times all around for you — whether at either of your homes (JH and Watsonville) or at your vacation spot of choice, in this case, Yosemite! I’ve always wanted to visit that park, by the way. Maybe one of these days we can go together and enjoy the beautiful surroundings and refreshing water you describe so well.

    I’m so happy to read just how much progress you’ve made. And you’re right in that there’s nothing like revisiting places for truly seeing how far you’ve come along over time. You looked great while in NYC and even happier in this shot of you in the woods. Your trips with your husband are far from a distraction from healing, but rather an important part of the process for sure! Give him our best and it was great to see you!!

    Hugs,
    melissa



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