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Whirlwind

Friday, April 12, 2013

I went back to NYC for a few days to visit my family. The hardest part of living in California is that it’s so far away from New York. Otherwise I love where I live and whom I live with.

Anyway, while in New York, I spent time with my parents and several friends, essentially the members of my adopted family, who came to my parents’ apartment to hang out. It was a whirlwind of activity. I did my best to set it up so that I only left Jackson Heights twice in the four days I was there. I didn’t have enough energy to see so many people and also travel around the city.

It was exhausting and fulfilling. I couldn’t sleep most of the time (except for a wonderful nap on Monday!). I was on overdrive, between the physical stress of travel and my desire to focus my attention rather than lounge around on the couch in a daze. Even the day after I got back, I couldn’t settle down. Beyond the hours of coiling, I was trying to catch up on banking and a stack of mail and other stuff.

In some ways, it was wonderful to be able to do what I did this time. Even in January, only a few months ago, I couldn’t handle the intense level of activity. More and more I’m starting to feel like myself again. The change in my walking was a huge boost. Now the ability to do several activities in one day, and still get up the next day to do more seems almost beyond my comprehension. I am finally, after over six years, able to see that the path I’ve been on will lead to a sufficient recovery.

For now, I am limiting my estimate to a “sufficient recovery” because I can see only that far ahead. I am still working towards a complete recovery. I don’t have the same sense of certainty about a complete recovery, but I see something good over the horizon.

The Mountain Cliché

There was a long period of my illness that I believed I got sick really quickly and yet the recovery is slow. That image changed in my mind as I walked through the airport carrying, carrying, my carry-on luggage, not dragging it along on wheels. It was a small bag, smaller than my rollerboard, but I couldn’t have carried it on any of my previous trips. Even walking around the airport used to be extremely taxing.

The way I see it now, I was slowly  slip-sliding down a mountainside, trying to maintain my balance, for years, from about 2001 to 2006. Then I fell off a cliff at the beginning of 2007. I’m climbing back up now. From 2008, when I started antibiotics, until the end of 2012, I was slowly working my way out of the crevasse and back to the cliff. It feels now like I have an arduous climb back up the mountainside, but at least now it isn’t so vertical and I can hike up it at a noticeable pace.

All this is to say that it’s been extremely difficult for a long time. Now it is merely very difficult. I see improvements from month to month rather than year to year. Life is definitely getting better, but there’s lots more to go.

Pondering the Next Moves

While I was away, I had time to think about what I need to do next. In the past few weeks, I thought I would start coiling for Ehrlichia or Mycoplasma fermentans. I’m not sure which one I have, or if I have either of them. I figured I would try working on one of the infections and see if anything changes.

I’m thinking about this because I can tell that something is flaring up in my abdomen. As the Bartonella herxes seem to be dying down a little, something else is going on. I intend to tackle whatever it is.

So, over the next month, the plan is to try several different frequencies, not limited to Ehrlichia and M. fermentans. I’m also looking into Protomyzoa, a recently discovered protozoa that is linked to chronic illness and has turned up in a startling number of Lyme patients who have been tested for it. I’m going to try a general parasite frequency, given that I’ve traveled in a few countries where parasites are more common than in the US, and specifically to China where I was just before I fell off the cliff into Lyme paralysis of my legs. If one of these four frequencies generates a noticeable herx, I’ll stop there and treat it until it goes away. If not, I’m going to try coiling for the Epstein-Barr virus, HHV-6 and the XMRV virus. These are all viruses associated chronic fatigue syndrome, the first two of which I had off-the-charts antibodies for when I got tested for them. So they are on the list for an eventual coiling program.

I’m feeling my way through the dark on these other infections. I don’t really know what happens next. I can tell there is more going on in my body, but I don’t know what it is. So I will continue to use symptoms as a guide and set up coiling “experiments” to find my way to the next stage of healing.

Women’s Issues

Yesterday, the second day I was back from New York, my period came. It wasn’t as bad as the previous three cycles. I think I’ve reduced the active Lyme infection load enough to see results in my reproductive tract. Still, I was knocked out for the day. Literally, I spent all but three hours in bed or otherwise horizontally positioned. I read some. I slept some. I didn’t coil because I felt a bit weak. My blood pressure was low which made me somewhat lightheaded when I was standing or sitting up.

But then I’ve had the “normal” (defined by US standards) PMS and menstrual symptoms. Cramps in my lower abdomen and back with my cycle. For a week before it started, I had some serious bloating (my breasts still haven’t shrunk all the way down to their usual, not-ballooned size).

Last year in February was the first time I’d ever had enough bloating for my breasts to swell. It was bizarre. I was worried I might be pregnant because it wasn’t part of my PMS experience up to that point in my life (you know, 25 years of menstruating!).

My swollen body got me thinking about what happened when I tried to forgo Metformin last year. I’ve been on it for a few years, ever since I got diagnosed with PCOS. When I stopped for a few months, my period went haywire. I’m hoping that at some point, after all these infections are eradicated, that I can stop it and go au naturel again…no more drugs at all.

I spoke to a friend who told me about using the Fertility Awareness Method to learn about my cycle, both on and off Metformin. It’s pretty trippy for me to do all the work of observing my cycle, but having no intention to use the information for either contraception or conception purposes. Instead, it is purely for me to understand how my symptoms relate to my menstrual cycle.

I’ve been reading about it. I started it yesterday. Already I think I should have been keeping track of this for the past few years, when my acupuncturist was worried that I was prematurely pre-menopausal, or when I found out I had PCOS the first time (based on a blood diagnosis) and tried herbal remedies, or when I got diagnosed the second time (based on an ultrasound) and began Metformin. Had I done that, I might have been able to discern what happened when I stopped the Metformin for a few months.

Anyway, this is to say that I am going to study another aspect of how Lyme and the other infections have changed the way my body works and try to figure out how to put it right again. I’ll include what I learn in future posts.

A Week’s Worth of Symptoms

I didn’t coil while I was on the road. It’s getting harder and harder to force myself to stay home and coil. Truth be told, I used to go to retreats on weekends and skip coiling at least one weekend a month, sometimes for three or four days at a time, sometimes more than once in a month. More recently, I took time off for 10 days in March and almost a week in April. I might take another day or two off between now and mid-May when I’ll visit my sister and her family for two weeks. But on the days I’m home, I coil religiously.

While I was in NYC, I had a lot of peripheral nerve irritation. Translation: my arms and legs tingled often. My joints popped a lot. I had insomnia. I was very achy, especially my muscles. I had a low level headache every day. The glands in my neck are swollen. All these symptoms continued when I got back.

While I was gone and not coiling for Bartonella, my abdominal swelling decreased by about 30%. It was still huge in the front, but by Monday night, my sides had gone down enough to give my waist some definition. (Bartonella swelling: reduced. PMS swelling: increased.)

Since I’ve been home, I’ve been very tired. I could used a few more rest days to catch up on the energy expenditures I overdrew this past week. I hope to be back to the Bartonella bounce by Sunday. I’ve also had the sharp, sudden pain in my left hip that shoots down my leg. It happened two or three times this morning while I was resting on the couch. I assume it is Bartonella, but I  don’t know for sure.

I’m transitioning to my more aggressive Bartonella treatment since I’m back. I did two sessions on Wednesday, the morning and midday sessions. Today I’m doing all three. Let’s hope I sleep tonight!

Lyme Poem

Continuing to celebrate National Poetry Month…

The Longest Walk

slowly
barely standing
barely sitting up, in fact
I found myself on a long walk

I’d been walking
slowly
in circles
for years
without knowing
the journey had already begun

no way out
no way forward
no way back
learn to walk again

all I know
for far too long
is the circle I walk in
without using my legs
around
and around
and around
going nowhere
stuck

slowly
feet shuffling
heart pounding
dying to rest
resting in fear of death
the life I knew fading away

slowly
barely standing
I take an agonizing step
forward

slowly
at a glacial pace
I make it across the room
to the toilet

slowly
at a geological pace
I return
to bed

years go by

I lean against my cane
slowly
I walk down the hall
and return to my room

slowly
I struggle out the door
into the city
wondering how I faded away

each step a challenge
each step imperceptibly small
each step a triumph
each step revealing how far I still have to go

Oh to run!
Oh to jump and skip and dance!
Oh to be free!

my dreams are constrained by the walk

my legs
I want my legs
to walk again
I need my legs
to complete this
the longest of walks

one day
my legs move
a little
on their own
I make it around the bend
only to see
the path goes on
far beyond the horizon

slowly
I stand
without tipping over
without the cane
without fear
I take a bigger step

with each step
slowly
I grow stronger
more confident
I move along the path

emboldened
I attempt to run
I fall
I laugh
at the absurdity
of running
me, running
I walk on

I haven’t found the end
I don’t know where I’m going
I cannot return to where I’ve been
I walk and walk and walk

endurance
no choice
change
no choice
stopping
not possible
escape
not possible

to live each day
I have no choice
I must continue
the longest walk

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