Saturday, March 28, 2009


On Wednesday my friend Shifa taught me Reiki level 1. This means I now have healing powers in my hands. As healing powers go, they are still in the developmental stages, but I have already had one or two mysterious, inspiring experiences when I was practicing on myself.
More soon to come on this topic.

Wednesday, March 25, 2009


The week of healing began Saturday night, when I took that crazy boot cast off my leg and threw it away.

I had been wearing it for two days, and by the end of that time my leg was killing me. With every step the boot managed to bang up against my shin, no matter how much I adjusted the straps and Velcro and padding. I had also spent a good part of the two days crying and in a deep depression.

This was due the fact that even with a thick-soled running shoe on the left foot, the boot had my right foot so far from the ground that my hips were uneven. My sacrum hurt when I went up and down stairs. Having all my bones slightly misaligned skewewd the mysterious and delicate balance of my body, and this was evidently effecting my entire nervous system. There is a reason we wear identical shoes on each foot.

When The Poet said, “You should take that thing off, it’s not helping you,” I knew he was right. I wanted it to work, but it was a disaster. I can congratulate allopathic medicine for one more humongous failure.

Once I was free of the boot, I collapsed onto the couch, relieved and exhausted. The Poet kissed me goodbye and left for Egypt for a week. As I lay on the couch, taking in how much I’d just put my body through, I realized I needed to do things differently.

The experience with the boot and the MD who gave it to me was, in fact, typical of so many experiences I’ve had with traditional western medicine. The doctor himself conveyed to me that he didn’t have the time or inclination to really care about me or my injury, and the treatment he offered me was woefully inadequate and showed how clueless he and his field are about how the human body really works.

I’ve had this experience time and time again. (A few MDs have been exceptions, most notably Dr. Marty Ross, who is currently treating me for Lyme.) And time and again I have found ways to get better with help from practitioners who don’t have the glorious title of MD, but who are often more knowledgeable about the complexity of the body and how it functions as a whole.

The two days with the boot had also brought home a simple lesson to me: if I am stressed out, frustrated and in despair, how in the world is my tendon or any other part of me going to get better? I needed to do what it took to get myself out of that mindset.

I was already anxious about The Poet being away, as these are times when I often feel lonely and don’t sleep all that well. I’d made one massage appointment to alleviate some of that stress, and I decided I needed more of that. I would make use of my time alone to heal, both with appointments and by slowing down, focusing on my body and what it needed, and trying to put myself in a relaxed state that would promote recovery.

And The Week of Healing began.

Here's the schedule:

1) two hours of meditation and visualizations every the morning
2) three 90 minute sessions of myofascial release therapy for my calves and ankles
3) learning reiki level one from my dear friend Shifa
4) appointment with naturopath Amy Derksen to address insomnia
5) setting up physical therapy appointments for next week
6) baking breads with natural sweeteners, no more sugar!
7) sauna & lots of stretching my achilles tendons

I have had some difficult moments. Nevertheless I feel much, much better now at the halfway mark than I did at the start.

The myofascial release has been a godsend. With each treatment I feel my calves and heels are more relaxed, when I stretch my feet and ankles I am more flexible, and the pain in my tendons, while not gone, is breaking up and lessening. Also the work on my body has made me feel just plain happy, the way you can feel happy for no particular reason other than physical well being. I’m still not sure this will be the entire cure for my tendonitis, but I must be heading in the right direction.

For a long time I’ve been too busy to slow down and focus on what my body needed, and I have found myself feeling tired and overwhelmed, and complaining more and more. I was casting around for answers, but the most important answer was to pay attention to my body. Healing takes lots of time and patience, but I’m reminded that, as with so many things that are difficult at first, putting in the effort can get you into a groove, and the change you’ve been seeking comes around-- quickly or slowly-- but it comes around.

Thursday, March 19, 2009


For the past two months' I have been suffering from tendonitis in my right heel. I had to stop dancing, which was the main source of joy in my life, and then give up long walks, a second source of joy. I tried to minimize aggravation, but as time wore on and I walked less and less and iced more and more, the pain did not go away.

Last week I tried acupuncture without much success. I have also tried myofascial release, which helped with some of the pain but my heel was still burning and aching when I walked too far, or uphill. Yesterday a pediatrist gave me this boot to immobilize the tendon entirely so that it can heal. I need to wear it all day long, everywhere, for the next two months. I am doing it gladly.

The greatest happiness for me since I started antibiotics for Lyme Disease has been to exercise again. After seven years of barely being able to stand up, to then feel my heart working and my body in motion was a joy that had no comparison. A few months into the antibiotics I started Lindy Hop classes-- during those hours I was happier than I can describe. As my strength built gradually over the months, I took more classes and spent more time each week dancing. No matter what else was going on in my life, if I could make it out to dance I could count on being immensely happy for the evening.

So in January when my heel started to hurt, I stupidly kept dancing, until I simply couldn't anymore. I rested it and tried again in a week-- only to make it worse. When I saw my naturopath, Amy Derksen, she said the Lyme Disease was further aggravating the injury and making it difficcult to heal. I started a second antibiotic to put the Lyme in check, and now, with the boot and a little patience, I am hoping this will do the trick. If I were the praying type, I would pray. I want to dance again.

Wednesday, March 18, 2009


In the last couple months I have spoken with three women who have just been diagnosed with Lyme Disease. Only one clearly recognized that this was a good thing. Her symptoms have been relatively mild (she is still able to work) but she has seen enough of Lyme in others to know getting diagnosed before her health has completely deteriorated is a blessing. Realizing she’s dodged a bullet, she is charging ahead with her treatment.

The other two, who have been sick for many years, greeted the news with more pessimism, skepticism, and even panic. This is understandable—Lyme is a difficult diagnosis to accept.

Diagnosis is the first step to recovery, and for people who have been in pain for years it should be welcome news. We all know, however, that it’s not that easy. With treatment so long, difficult and expensive, it is easy to feel discouraged before even beginning the recovery process.

For all these women, I wished I were a better example of unequivocal success—but I’m not there yet. After a year and a half of antibiotics, I am much, much better. There is no question for me that I made the right decision when I started the pharmaceuticals: it has changed and will continue to change my life. On the other hand, I am still sick, still injecting myself daily with heparin and penicillin, far from gainfully employed, and going through one particularly frustrating setback at the moment. So I can't just say, yes dedicate the next three years of your life to taking antibiotics—you’ll love it!!!

But here is someone who perhaps can. As of today, I am adding Lymie Lisa to my links page. She has recovered completely—or infinitesimally close to completely—from Lyme. She has a full time job. She travels, she acts in plays, cooks, baby-sits, decorates her house, takes beautiful photographs—in short, leads a full, busy life that anyone who hadn't been ill might lead.

I have linked to her posts about Lyme. You might want to scroll down to the very bottom, to her earliest post, as it is very encouraging. You might also want to read the other posts about her current, very creative, healthy life.

Thursday, March 12, 2009


Three months ago, I bought a house that is five blocks from our apartment. From the sidewalk you climb a long flight of stairs up a small hill to the front porch. Looking out from the porch, there is a view of the gracefully arching Aurora Bridge, the green trees of Queen Anne Hill, and that icon of the Seattle skyline, The Space Needle. The living room of the house has two large picture windows that show off the view and let in waves of sunlight.

I had wanted to buy a house for many reasons. Right now The Poet and I live in a tiny apartment that we love, but we are renting it, so I don’t feel secure that we can stay here always. I also wanted to have a home that was more energy efficient, with a dishwasher and little luxuries like screens in the windows and a stove vent fan that doesn’t sound like Hell’s Angels are arriving in my kitchen.

Besides, I thought it was the right time to get into the real estate market. If you can recall how things were in August, house prices were dropping, but the economic collapse had not happened, so it seemed like a good time to get into the game. I started looking.

And I looked, and I looked. I wanted to stay in Fremont, where everything is a pleasant, hilly walk from our door, and I can get my library books, groceries and exercise all in one trip. I looked for two and a half months, and saw some pretty awful places, or places that weren’t quite right, or had no good windows, or were tiny and overpriced. As I looked prices came down a little more, and at last I saw the house I wanted.

At that point I didn’t care that the house was old and badly needed renovations. I could update it myself, it would only take a month or so.

I didn’t have money to make the down payment and do all the necessary repairs, so I put in a very low offer. When, to my surprise, I got a counter offer just a few thousand above that, it seemed too much of a good thing to turn down. On the brink of actually buying a house, and one that need extra work on my part, made me extremely nervous. I talked it over with my parents and The Poet and decided to take the deal.

Three months later, I can’t believe how na├»ve I was. Looking back now, I wish I’d paid attention to how nervous I felt and backed off. In the last few weeks, as the renovations have dragged on and on and the final tally on the cost has been apparent, I’ve known I wouldn’t have undertaken this project had I been able to see into the future. And yet, there is no use thinking that way. I’d gotten myself into it and there is no going back. I simply have to see it through.

At some point along the way, The Poet and I decided the most sensible thing would be for us to rent the house. Taking on the mortgage would have almost doubled what we pay now in rent. I had hoped to defray this by making the basement into a separate apartment, but the other renovations cost so much that I had to put that off. With my medical expenses, and lack of a job, it’s best to keep other expenses at a minimum. We love our little apartment, so this isn’t too much of a hardship. To tell the truth, recently I haven’t minded washing the dishes by hand as much as I did when I started looking at real estate. (This is a testimony to improvement in my physical stamina. Dishes don’t seem so tiring when I’m not so tired myself.)

There are other advantages to staying where we are: being a few blocks closer to the library, the food co-op and the gluten free organic bakery; not having to move or buy furniture or rugs for a bigger space. I think we might even spruce up the extra room so that it’s a decent guest room and not just a place full of suitcases and stacks of old books.

Meanwhile, as I have suffered through the last few weeks of the renovations, I have often wanted to scream at people to stop asking me what kind of light switch I want and to stop calling me at 8 am when I am not yet awake, and not to expect me to make one more trip to Home Depot when I need be taking a nap.

In my exhaustion and frustration, and I have asked myself over and over why I did this. At my lowest moments I have felt that I’ve wandered far from my values and I am being punished for it. I have fallen into the trap of chasing after more: a bigger space, better things, but things—like pretty bathrooms and hardwood floors—that ultimately I don’t care about and I know won’t make any difference in my happiness or the Poet’s.

Yet deep down I know why I did this. It wasn’t the devil, or the trap of materialism, or thinking a dishwasher would change my life. It was one simple thing: I want to adopt a child. I know it can’t happen now, and because of Lyme disease having my own baby is not practical, but for some time I have carried a wish around inside me: to have a child once I am better, perhaps a six or seven-year-old, who needs parents and a home.

This would hardly be possible where we live now, with The Poet and I going through an intricate space-sharing dance each day, in a place so small we don’t have a kitchen table or room for a desk (now writing is done in the armchair or on the couch). The new house, although not large, easily doubles the 750 square feet we live in now, and would be perfect for a family of three.

Who knows if this will ever happen. For starters, I have to get over Lyme disease. Then there is The Poet, who likes the new house, but is only lukewarm on the idea of adopting a child. When we met, he was more enthusiastic about babies, although we both knew it might not be possible for me. As his work has been more draining and he has struggled through his own insomnia, he has begun to declare more vociferously that he does not want to have children because it takes too much time and energy. Still, on other occasions he has said that he would be willing to give foster parenting a try. (He is already a wonderful father to his son David, who unfortunately lives so far away that he only comes here twice a year.)

Then there is also my other dream: to write. When I think about what I am working towards, what I hope from my life when I am better, it is these two things: to be able to adopt a child, and to write.

But having a child takes money, and writing is the opposite of earning money. When I think about it truthfully, I probably won’t be able to have everything I want in the future. I bought the house so there might be room for a family, and yet if I want to write I would have been better off keeping my money in a CD and using it to buy time for writing once I am better. Now that the money is in the house, I don’t have that option.

“Don’t worry,” the Poet tells me. “The house will be a good investment if you give it time, even if we don’t end up living there. In a few years you can sell it and have more money back.”

He may be right, and yet I know that I will have hard choices to make once I’m over Lyme. I will need to sell the house if I can, or I will need to find some source of income, even if it’s part time. Ten years of illness will have its price, even after I am better.

These are things I cannot worry about now. I can only take small steps, as I am able, toward the things I want. For the past three months it has been fixing up a house. Now it is about finding someone to live in the house and turning my thoughts and energy back toward healing from Lyme disease. Meanwhile I am finding an hour, here and there, to start writing again.

Monday, March 9, 2009


Last night I received an email that one of my short stories will be published in a literary magazine. My first publication in ten years, my first story publication ever!

Thanks go the Poet for encouraging me to submit it.

Thursday, March 5, 2009


Here's a list of my current prescription medications:

Bicillin (Penecillin injection) 3x per week
Diflucan 1x per day
Azythromycin/ Zithromax 1x per day
Heparin injection or sublingually 2x per day
At the moment my body is demanding two naps per day, which I am happy to do. The more sleep, the better!

For the past two months I've had tendonitis in my achilles tendons, primarily the right one. This started while I was dancing, but there was no particular incident that set it off. It hurt a little, then a little more, until I just couldn't dance anymore. I stupidly tried to dance on it a few days later and made it worse. I have since cut out all dancing and long walks, I've been icing it up to four times a day, and even used a far-infra-red light to stimulate healing, but it just won't get bettter.
According to my naturopath, Amy Derksen, I had a small injury or stress there, and Lyme disease swooped in and is now preventing the tendon from healing. The zythromax is supposed to help, but after an optimistic ride on an exercise bike, my heel hurts again.
Has anyone out there been through something similar? Let me know what might help!