Sunday, November 30, 2008


Yesterday morning The Poet took David back to the airport. It was a short visit, but a good one. We went to see the dinosaurs, worked on our basketball skills, played monkey in the middle, and chess. We ate mac and cheese and spagetti and worked on our table manners in case Barack Obama ever invites David the White House.

Most importantly, David and his dad got lots of wrestling time in. Wrestling includes any weapon you have: butt tickles, imaginary swords, and licking the other person's face. Since The Poet subjects me to this treatment when David is not around, I was glad to watch them from the sidelines for a change.

I never got the point where I felt I couldn't keep up with being a parent. (Cooking Thanksgiving dinner was a different story, but that turned out OK.) Before David came the Poet and I agreed that I could sleep until 9am (if I don't sleep until 9 am I am a wreck), and after that I would help out as much as I could. And it worked out just fine.

The only time I had to tell David I couldn't do something was Thanksgiving day.

"Im bored Tanta Noel, can we go outside and play basketball?" he asked.

At that moment I felt extremely parental. I was wearing an apron, I was cooking the Thanksgiving Turkey, I was keeping one eye on a kid, and my man was asleep on the living room sofa.

"I'm sorry David, I can't," I had to say. "I'm really busy cooking right now. Can you be patient until your Baba wakes up from his nap and then he'll play basketball with you?"

As I heard my words I felt the strangeness of them, as if I had stepped into the skin of a different person. How bizarre it was, to find myself suddenly thrust into this very normal role, which previously had been banned from me, and to find myself playing it rather well.

Thursday, November 27, 2008


Yesterday and the day before I had nice, steady energy. Take care of a seven-year-old all day? No problem. Spend most of the day on the phone trying to work out a solution to the easement isssue on the house I'm about to buy? I managed. And I paced myself, so that by the end of the each day I could still cook dinner, or get to the gym for a quick 20 minutes on the treadmill and the all-important sauna.

I wasn't crawling into bed exhausted, as I'd worried I would, but I was sleeping well. I caught myself thinking, "it barely feels at all like I'm sick."

And then today, when I was hosting Thanksgiving for 9 people, I woke up from a rocky night's sleep, and was so exhausted when I pulled the celery and mushrooms out of the fridge that I decided to go back to bed. The stuffing could wait. I had to make several trips to the bathroom-- my body was dumping toxins. I took a bunch of B vitamins and got back into bed, drifting between sleep and that warm, tingly and heavy feeling that lets me know my body is healing, and workin' hard at it. Every time I tried to get up it seemed impossible.

But I had to do it. I had people counting on me to cook the bird.

Thanksgiving is my favorite holiday. I love turkey, I love cranberry and green beans and gravy, and food with tons of butter, and berry cobbler made with maple syrup and lemon zest. Ever since I moved to Seattle I've hosted Thanksgiving. The first year with my parents visiting and doing all the cooking for me, the next I co-hosted at my friend Judy's....this year I had invited 6 friends over, plus me, The Poet and David. Besides the turkey I was planning to do the green beans with lemon zest and pumpkin pie. All of it gluten free, of course, and with whole grains and unrefined sugar.

As soon as I got the turkey in the oven, however, I was on the verge of collapsing. I managed to get lunch for myself and David, while The Poet, who had been asleep on the couch while I cooked, promised he and David would clean the living room before they went out to play basketball. Kudos to him, as he is usually the Thanksgiving scrooge.

As soon as they were outside I sat down in the big comfy chair with my feet up. Once I started to tune into my body, I remembered all my supplements. Back in the chair a few minutes later, fortified by a glass of chlorella and a dose of ginseng, I started to drift towards sleep. Twenty minutes turned into forty, and the boys were back inside and the kitchen timer was beeping.

Getting up to baste the Turkey seemed like climbing Mt Ranier. I looked over at The Poet.

"Do you know how to baste the Turkey?"

"Of course."

"Really?" I was surprised. The Poet gave me a look.

"Sweetie, I don't even know what it is you're asking me, let alone know how to do it. I don't know what that word was you just used."

"Baste-- with a turkey baster..." By now we were both laughing, and by the time I had tried to explain it to him, I decided it was easier just to get up. He'd already opened the oven by way of getting in touch with the concept of basting. When he saw me in action, he got excited.

"It will be really good if I inject the Turkey with white wine and this juice. Do you have a syringe?"

"No," I said, in absolute denial of what we both knew to be true.

"Where's your needles for your injection?" he insisted.

I didn't put up much of a fight. In a minute he had one of the syringes I use for my daily heparin injection, and was pulling off the sterile wrapper. He got busy. Eventually, I had to reign him in, so we could get the Turkey back in the oven.

I collapsed back onto the couch, realizing I was having one of the worst days, for energy, that I'd had in a couple months. I gave up on the green beans, and on putting an extra leaf in the table. We'd eat buffet style and sit in the living room, so I wouldn't have to worry about setting the table either.

And you know what, when my friends came it was all fine. Everyone brought a dish, and Judy made the gravy for me. Her husband, a surgeon, carved the turkey, which didn't taste too bad. I managed to get the pumpkin pie in the oven by the time we had sat down for the first course, and no one missed the green beans-- the salad was more than enough. The Poet by then had transformed from Thanksgiving scrooge to Turkey-basting champ, and washed all the dishes in a feat of extreme heroism.

What I love most about Thanksgiving is being with friends, and, as always, that was the best part.

Now I truly am going to collapse, and tomorrow I'll figure out what to do with this huge mound of uncooked green beans.

Monday, November 24, 2008

Surpise Visitor

It is 11:30 and I've brushed my teeth and taken all my bedtime supplements. The Poet is the bedroom asleep, and in our tiny guestroom is his seven-year-old son, David. David usually lives in Atlanta and we don't get to see him enough, so this is a very happy event. We bought his ticket yesterday, when we realized it could be done for no more than if we'd organized it months ago (one upside to the economic turmoil, I suppose).

Ten days ago I was assuming we'd have a very quiet Thanksgiving with just the two of us. Now we have a full house on Thursday, plus David all week long. I am thrilled. Thanksgiving, especially, is the time of year to have friends and family around.

I will be in charge of David all day tomorrow and Wednesday, while The Poet is at work. We've agreed I can sleep until 9, so I can get the precious morning sleep my body needs in order to function. The rest of the day is going to be a bit of a stretch for me-- no time to keep meditate or think about how my toes feel, and I'm not sure what we'll do for the afternoon nap-- I may make David take one, too.

At one point today I felt nervous about whether I'll hold up tomorrow, but now I've decided to take the next few days as a test of how much better I am. Can I handle this without being wiped out at the end of the day? Maybe. The fact that I'm even saying maybe is a huge improvement from where I was a year ago.

OK, off to bed so I can function tomorrow.

Friday, November 14, 2008


Today we’re interrupting the regularly scheduled Lyme-related solipsism on this blog. Instead I’m going to write about a non-pharmaceutical treatment for depression and insomnia that is amazingly effective. It’s called the Neurotransmitter Program made by CHK Nutrition.

This entry is not an infomercial. No one is paying me to write this.

Two years ago The Poet was extremely depressed. He woke up in the morning and cried for an hour, he worried that he would lose his job and wind up homeless. Any discussion about our future immediately reverted back to tragedies he’d been through with other people that he assumed inevitably he and I would repeat.

When things hit bottom for him, he finally listened to my suggestion and went to Carolyn Humphreys to try the Neurotransmitter Program. Within days he was feeling better. Over the next year, under Carolyn’s supervision, he continued on the Neurotransmitter supplements. A year ago he stopped taking them, and his depression has not returned. A few years ago he could have easily spent an hour crying before he left for work. This morning he spent that time talking about Borges and teasing me about my recent mishaps trying to learn swing dance air moves.

But wait—there’s more! Carolyn had mentioned that the Neurotransmitters help with insomnia as well as depression, so I told my friend Maggie about them. For six months she’d had terrible insomnia and had gone to countless doctors and tried everything she could. Still, she was sleeping only four hours a night, could barely function and was worried she might lose her job because of it. She started sleeping well again on the neurotransmitters. She continued the program over the next 18 months, and also followed up with Carolyn with treatments to bolster her overall health.

Maggie saw Carolyn for the last time in March or April, and she has been sleeping well ever since. Occasionally, when she’s under a lot of stress from work, she might sleep only six or seven hours for one night, but her sleep goes right back to normal after that.

How does it work?

Depression and insomnia are both caused by a chemical imbalance in the brain: a lack of neurotransmitters. Neurotransmitters get depleted over time for lots of reasons, prescription medication being one of the biggest causes. (Pharmaceuticals can be great when you need them, but your liver has to work overtime to process them, and that drains you of nutrients.)

So listen up! Antidepressants might be a temporary fix, but they don’t address the root cause of depression, in fact, they might make it worse. (The Poet himself had been on antidepressants before I met him.) Only your brain can make neurotransmitters, but it needs the right ingredients to make them. The CHK Nutrition program gives your body the amino acids and vitamins that your brain needs to start feeling better.

The only way to take these supplements is through a health care professional. If you live in San Diego and think this might benefit you or someone you know, run, don’t walk, to Carolyn Humphreys. If you are elsewhere, my suggestion is to look at CHK Nutrition for their phone number, call them up and ask them for a list of practitioners near you who use this program.

The Neurotransmitter Program takes commitment. You will have to take urine tests (you do them at home and mail them in) so the program can be tailored exactly for your body’s needs, and you most likely will need to take supplements four times a day until your brain chemistry is balanced again—this is months, not days or weeks. It’s worth it.

If you find a good practitioner, he or she will also check to see if there are any underlying health issues that might be contributing to depletion of neurotransmitters. For example, in The Poet’s case it turned out he had a low grade intestinal infection and also super-low Vitamin D levels. Once he took care of those things, his happiness set point climbed even higher.

I am not a doctor, any quasi-medical explanations in this post are based on my unscientific, lay-person’s knowledge of human biochemistry.

Wednesday, November 12, 2008


Since I have four different doctors, including naturopath, gynecologist, and Dr. B who prescribes my heparin, I spent most of Monday and part of yesterday calling and talking to doctors or their staff to be sure that this irregular menstrual cycle was not a cause for alarm. I have been assured that this often happens for no apparent reason, and was relieved when the naturopath and Dr. B told me the blood thinner heparin is not causing extra menstrual bleeding, nor would any of the supplements I am taking set it off, according to the naturopath.

As of now the second cycle has come to an end, so perhaps that was all there was to it, just a few days of my hormones following their own calendar, for whatever reason. It seems that not everything unusual that happens in my body is a disaster, nor is it caused by Lyme Disease. As of today, I am no longer worried.

Sunday, November 9, 2008


At the end of my last post I mentioned things were going well. Besided the election, which has me feeling better about, well, the entire world, things have been on an uptick for me personally. I have just successfully worked my way onto the full dose of my current antibiotics, and have been sleeping relatively well and feeling OK most of the time. Months of looking at real estate are coming to a close as I found a house The Poet and I both dig and to my astonishment I am in the process of buying it far below asking price and with a low interest rate.

Even writing this blog has been a big step forward for me, as I have found a way to write again, albeit sporadically and in a totally self-obsessed way.

It is the way of the world for luck to turn, for things to go well and then to go badly. If there is one thing I have learned with this illness, it's that I can't get through the treatment on automatic pilot. I almost, almost thought that I would have a little time when, medically speaking, things would be uneventful. Over the past several months I got through the sleepless nights, racing heart and jitteriness of working up to the full dose of Bicillin and then Diflucan, and figured out a time table of when to do the injections and what time of day to take the Diflucan so that I can sleep and go dancing and have energy to cook and keep on top of my supplements. In the past two weeks I have even been able to cut my naps down to just one a day, and I've been feeling really quite OK, and my days were starting to fall into a routine.

But yesterday my period started, the only problem being my period just ended a few days before. I have had nothing like this happen in my entire life, not even in the last nine years of being sick. I don't know what to make of it. I am on two blood thinners (because Lyme Disease has made my blood hypercoagulable), both of which I've stopped taking entirely until I can get to a doctor tomorrow.

It's that familiar feeling of not knowing what is happing in my body, only in a new, unfamiliar way.

It seems there is no escaping Murphy's Law, but throughout the day I have been reassurinng myself with father's corollary to it: Things will go wrong-- and it's usually OK when they do.

Wednesday, November 5, 2008


Election night four years ago I spent by myself. I was living in corporate housing in the bland Seattle suburb of Bellevue, there solely for the purpose of getting treatment from Dr. X. Apart from the staff at Dr. X’s office, I knew no one. My mother had been splitting her time between Bellevue and Washington DC. When she was here, she walked over the local democratic campaign headquarters to campaign for Senator Patty Murray and Kerry.

When I felt well enough, I went over with her and made calls in the phone bank room. I remember the ink from the print outs of names and numbers had a chemical smell that made me feel sick, but I kept calling anyway.

A few days before the election, my mom flew back to DC. I went to the campaign headquarters on Election Day and did what I could, but the focus that day was canvassing and putting up yard signs, two things I was too weak to do.

Finally towards the end of the day most of the volunteers headed to Seattle for the final party, but again, this was too much for me. I went back to my apartment. As the election results came in, I called home to talk to my family. But in time, with the race still too close to call, they went to bed. It was well past midnight on the East Coast.

I told myself I should get to bed also, that it I would be exhausted if I stayed up too late. I brushed my teeth and took another quick peak at the TV, then watched a few minutes more, and a few minutes more to see if new results came in. Suddenly it was happening: Kerry was giving his concession speech. I stared as disbelief turned to horror. I shouted, “No! No! No!” at him, but he didn’t hear me.

Misery craves company, and there is no misery like watching John Kerry concede to four more years of W. I wanted desperately to talk to someone, but everyone I knew was on the East Coast and asleep

Every bit as difficult as the physical hardship of chronic illness is the emotional hardship. No matter how hard you compensate for it, if you are too sick to do basic things, such as work, stand up, get around on your own two feet, you will experience stretches of absolute isolation. By the last election there had been many lonely hours I’d already endured, but that night was the loneliest.


“Thanks so much, we already voted,” I called out cheerfully to the three sets of canvassers who came to our door yesterday. I had become one of Armistead Maupin’s “We People.”

The Poet and I had four invitations to election night parties, and decided on the two closest to us. We spent the evening surrounded by friends. I was in a state of nervousness-on-the-edge-of-happiness until eight pm, when we heard a huge shout go up as we walked in the door of the second party. I rushed to find Ghusun and we jumped up and down in each others’ arms.

I cried a little and called back home to my family: they were still awake and jubilant.

For the first time in my life I felt truly proud to be an American. (I can say it, Michelle, even if you can’t). We have a small American flag-- it's left over from The Poet's citizenship party and I keep it in the closet. As soon as we got home I pulled it out and waved it.

At this moment I am happiest of all for my country, for what this means to all of us, and for what this means to the world. But this morning as I woke up and I remembered that night four years ago, I had another moment of being happy, for myself.

In these past four years I have gathered around me gorgeous people. Primarily a man with a generous heart, and after that so many friends I can’t keep up with them all the way I want to. They all have helped me get better. I can walk anywhere I like now and take care of myself on my own. Just walking through the grocery store on my own two feet yesterday is something I do not take for granted.

Right now it feels like everything is going up and up. It will not stay that way, not because I am pessimistic, but because that is the way of things. Recently my father said to me, “You need to be prepared for Murphy’s Law: things will go wrong. And you also need to know that it will be OK when they do.” He was talking about buying an old house, but it applies other places.

He hardly needed to tell me that things go wrong. I know that. And now I know that yes, given a little time, it’s often OK when they do.


Even The Poet, resident political crumudgeon, was out of the apartment at 7am today, to be sure he got his vote in. Home tonight at 11 after two parties, we are still talking to each other about it, repeating to each other how wonderful it is, and slowly coming to believe that this actually happened.

I am proud of my country. We can be so much more than we've been for the past eight years.

Today is a very, very happy day.