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Data Points

Friday, May 31, 2013

I don’t get to visit my sister very often. I enjoy spending time with her and her family. I became disabled shortly after she got married. When I look back at the trips I’ve taken to see her, I can see how far I’ve come. More striking, however, is the change in my abilities and reduction in my illness since my nephew was born. I started coiling two months before he arrived. The difference between then and now is striking.

The First Visit

From the first visit, in April 2011, I remember being very tired and in tremendous pain a lot of the time. I hung out with my sister and tried to help out. I couldn’t do much. Mostly I was there to be there to provide companionship and to fall in love with my nephew. This post from the day I left sums it up. However, I already saw evidence that the coil machine was making a difference, as explained in this post.

The Second Visit

My second trip down, in June 2011, was a little more involved. My mother and I rented a car so I could bring the coil machine and stay for three weeks. I stretched my limits on that trip. I remember wanting to be able to juice (something that I still don’t manage to do as often as I’d like), but being way too tired. Mostly, I rested and took care of myself in the morning. Then I picked up my nephew at lunch and brought him to have lunch with my sister. Then I watched him until around 5pm when my sister came home. Fortunately for me, he took a two hour nap every afternoon, so I held him (and sang and talked and walked around) for about two and a half hours. By the end of that amount of activity, I was washed out for the evening. At best, I stretched out on the couch and watched tv with my sister. Or I went to bed early. It was both difficult and invigorating. I started to imagine, for the first time since I got sick, that someday I would get better enough to have a normal life.

Here are some of the posts from then describe what it was like: pushing my energy limits, what the symptoms were like, running out of energy despite resting, running out of energy again, and debilitating hand pain.

The Third Visit

My next trip was in December 2011. Once again, I took coil machine with me in a car, this time with both of my parents. We stayed for two weeks. At the time, I could see a big difference the ten months of coiling had made. My pain level was reduced. I’d just gotten a second coil and was making serious progress. I was still suffering from serious lack of energy. And I “felt” disabled, especially when I saw what everyone else was doing. Still, I was walking better than I had before. I was able to play with my nephew for a little bit each day. I needed naps. I needed down time. The two hours I spent each day coiling were a part of the time I needed to rest. When I coiled for Lyme, it knocked me out and I could barely participate in the family activities. But that trip was the first one when I did a long walk. My then-boyfriend (now husband) was with my family for the holidays. We walked over a mile one day. It was hard. I slept for several hours when we got home and was barely functioning at dinner. However, the fact that I could walk so much was amazing.

In fact, shortly after I got back from my sister’s place, I took my first coiling break. The Lyme had calmed down and didn’t flare up again for almost a month. The Babesia went away, and stayed away from January till September. I was jazzed to see the huge leap, year over year, that first year of coiling. The improvement was more marked than any single year over year on antibiotics.

I thought I would visit again during the summer of 2012. That never happened. But it was for wonderful reasons. I moved to California and spent the summer planning and preparing my wedding with Joe. I got to see my sister and her family at my wedding. But my next trip to their home was a whole year later.

The Fourth Visit

In December 2012, the celebration was much bigger. In addition to my family, several members of my brother-in-law’s family came for Christmas. I got there first, since I’m not working and could “afford” the time. It took me about three days to recover from the plane trip. I was more or less at the end of the Lyme coiling season, which was a good thing, because I was going to be away from my coil machine for three weeks.

I was not quite done with my second round of Babesia. But something pretty amazing happened during the trip. My body’s immune system woke up and continued the battle after I stopped coiling. I continued to have night sweats, headaches, light sensitivity, lowish blood pressure and severe fatigue the first week I was there. They all disappeared abruptly. It seems I had once again wiped out the active Babesia infection primarily using the coil machine. (When I got back to my machine and coiled for Babesia, I had no herx.)

What I remember about the trip is being slower than everyone else. My brother-in-law’s family hadn’t seen me for two years, a few months before I started using the coil machine. They remarked on how much better I seemed. I remember being able to do about half of the activities that everyone else did. I took my share of naps. But I also took my share of walks, went to a college basketball game, played with my nephew more than the previous year and generally got to pal around with people. The only thing was that my battery died earlier than anyone else’s. I was ready for bed at dinner time. I was a bit slower to get up in the morning. I couldn’t play with my nephew when he got up early in the morning, but I could chat with him if he visited my bedroom to see the three-piece mirror or discover his Christmas present.

I was okay, symptom-wise, for about ten days. Then they started creeping up again. I suspect it was the Bartonella infection that was taking the biggest toll, or one of the infections I haven’t started coiling yet.

The summary of my trip is in three parts: plan for the coiling break, a sample day, and a retrospective look at the trip.

The Current Visit

This time, it is only six months since my last visit to see my sister and her family. The difference amazes me. Once again, I am taking a break from the coil machine. This time heading into the trip, I was working on getting rid of as much Bartonella as possible, but I am far from finished. I am near the end of this seasonal Lyme flare, though I suspect that when I get home, I’ll still herx when I coil for Lyme.

But the time here is different. So different. I get up in the morning, usually at 7am (7am, unheard of for someone with Lyme!) when my nephew comes in and asks if I’d like to play with him. Wow. I’ve been running around the house with him. We’ve been throwing sticks in the yard. I carry him when he wants to be picked up. I sit on the floor, then stand, then sit, then stand, as we change games. I’ve been singing and making up funny words and reading him stories.

I still need a nap most days, while he is at daycare or while he takes his naps. But I was able to watch him for most of the day on Tuesday, giving his parents time to get the work they need to done before their next child arrives. The only thing is that when I play with my nephew, I don’t have the energy to help with the housework. It’s one or the other. I guess there is still room for improvement.

I still have symptoms, especially tingling in my hands and feet, and insomnia. But it isn’t impossible to do things despite the symptoms. I did seem to catch a virus and got allover body pain, accompanied by a terrible headache, insomnia and a fever (it’s been a long time since I’ve had one of those). That knocked me out for a day. But I was almost celebrating that my immune system is working again. Hallelujah!

It is heartening to be able to participate in the life of a young person. I’m glad to be here and be more able to assist my sister and her husband and to play, play, play with my nephew.

The coil machine has made such a huge difference in my healing. I’m grateful that someone trustworthy told me about it and that I’ve been able to figure out how to use it successfully.

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