Monday, December 22, 2008


Each day I wake up in the early morning, when it is still dark—sometime between 5am and 6:30. As I disentangle my mind from my dreams, I notice that my jaw is clenched and the back of my head feels tight. I hear The Poet snoring in the bed beside mine, or I turn over and see he is reading in the silver glow of his book light.

I go the bathroom, come back to bed and take about twenty pills, the smallest the size of a caper, the largest more like a blackberry. I swallow a half-spoon of ginseng powder that I measure out in a 1-gram-sized spoon, and I drink down a large glass of vitamin C solution, which I mixed up and brought to the bedroom the night before. There is also the sea salt I keep in a glass jar by my bed so I can scoop it up in another 1-gram spoon and wash it down with the vitamin C.

Within a few minutes I feel a gentle release of the tension that has built up in my body while I was sleeping. I grope around for my eye cover, put it back on, take a few drops of a homeopathic medicine and go back to sleep for anther two to three hours, if I’m lucky.

When I wake up I go to the kitchen to mix a drink of grapefruit juice, amino acid powder and magnesium solution. Then after breakfast I take another ten pills. At lunch I take fifteen more, and at 5pm I revisit the amino acid powder and grapefruit juice, along with six or seven more pills. Of course dinner and bedtime are accompanied by their own sets of capsules, and after lunch, right before I take my daily nap, I mix ¾ of a teaspoon of chlorella into water and drink it down with capsules of olive leaf, B-vitamins, and another half spoon of ginseng.

There are injections as well: heparin to thin my lumpy blood and bicillin to kill off the Lyme. These two are prescription medications, and one of my pills, the Diflucan, is also a prescription. The rest are all nutritional supplements.

On Mondays I take out all the supplement bottles, which I keep in an IKEA box, and I gather up the empty pill boxes and fill them with the supplements for the coming week. I learned early on that if I do this sitting at a table the pills will inevitably spill, roll off the table and onto the dirty floor and be wasted. Now I spread a towel and then a clean cloth on the floor do the operation there. It takes me about an hour.

At last count I had twenty nine bottles in my IKEA box, and most of those I take in multiples of three or four a day. I’m probably taking over 100 pills a day, but I haven’t counted. I don’t want to know. I have a sneaking suspicion that no one in the world is taking as many pills as I am, not even other people who have Lyme, not even other people who have Lyme and live in Seattle, where going to the naturopath and taking supplements is more common that going to church.

Taking this many pills is absolutely preposterous. As is the case with many preposterous things, no one planned it, it just evolved. At first Dr. X put me on a few supplements—B vitamins, magnesium. amino acids. I felt less moody and more energetic. When I started iodine, I slept better. In a little bit I was taking a multivitamin as well, then an ayurvedic herb, which balanced my blood sugar and thus kept me from feeling like I might pass out when I got hungry, and so on.

Once I hit a critical point, things changed for me. I was able to stand up long enough to do the dishes, then I could walk the block and a half to Starbucks. Soon enough I could grocery shop, and cook for myself, and even simply go for a walk in my neighborhood. Taking all the supplements was a pain in the rump, and expensive, but given the alternative of lying in bed and aching all over, I didn’t mind.

I was already taking about twenty supplements when I started my antibiotics. At that point all hell broke loose—racing heartbeat, bouts moodiness, and of course insomnia. With every new antibiotic I’ve had trouble sleeping, and Dr. Ross or Carolyn has added another supplement to help. And it does help—and meanwhile, the number of things I take has gotten larger and larger.

So I can remember to take everything at the right time, I keep some pills by my bed, others on a shelf beneath the TV, and others on the kitchen table. I’ve tacked a piece of patterned cloth across the bottom half of the kitchen window, for the express purpose of blocking the sun from shining through onto the bottles and pill boxes I keep there. Too much sun and heat is bad for supplements.

The last time I stopped taking my B vitamins, I became so exhausted I had to call The Poet to pick me up in the car when I couldn’t make it home from a close by coffee shop. When I forget to take my dinner supplements, I don’t sleep well. I often cannot sleep well if one certain pill—iodine, for example, or magnesium-- doesn’t make it into the boxes.

As one might expect, I rarely miss a dose, and I make sure my bottles don’t go empty before I buy replacements. There are days when most of my time and energy goes to organizing pills, ordering pills on the internet, driving to the store to buy more pills, emptying the cardboard boxes that pills are mailed to me in, and of course taking the pills themselves. As in Julio Cortazar’s short story about the watch, the pills no longer belong to me-- I, in fact, belong to them.

On the other hand, I am doing fairly well even while on a grueling antibiotic regimen. My liver function has always been good, my blood cell count is in the normal range, and I am able to sleep without prescription medication. I go swing dancing twice a week, and I go for long, hilly walks on other days.

I am dependent on my parents to pay for all the supplements, but I am not dependent on anyone to cook or shop for me, or do the dishes for me or drive me places, and that is a blessing.

All this belongs to the pills, just as much as I belong the pills, and although I would rather not belong to them, I am also grateful that I do.


The Girl With The Sun In Her Head said...

I thought it was rough taking my approximately 40 pills daily! 100 pills, yikes!

-Anna, another Lyme patient in Seattle

Naomi said...

Hi Anna:

Yes, it's crazy, isn't it? But it's also worth it. What we go through to get over this illness! I like your name: The Girl with The Sun In Her Head. So poetic!

And thanks for the book recommendations on your blog. I like Jerome Groupman, so I'll check out his book.