Saturday, December 19, 2009

A LITTLE CLOSER TO FREE



I have been home almost a week, and have written every day. I'm up to 40 pages now.

I've also added some cautious jogging to my usual Capitol steps workout, and haven't worsened my tendonitis. It's I sign I've broken through a big barrier in the eleven month struggle with that.

I had a moment yesterday when I was feeling so strong and healthy, that I thought "I feel right now like I don't have Lyme at all, it might not be long now until it's true." Then my eye caught the little table next to my bed, its surface crammed with the various supplements I take throughout the day, and I remembered I still need them all to feel as good as I do.

Oh well, it was a nice thought while it lasted!

Two days ago I added Biaxin as the 4th medicine in my Lyme protocol (in addition to Rocephin, Flagyl, Minocycline). Since the Minocycline makes me sleepy, I assumed the Biaxin would, too. It did the first night. Last night again I took them both right before bed, with a heparin injection, and bingo, I was up until 3:30 am, with my heart pounding loud and fast.

So I'm a little tired today, trying to plan the best strategy for writing at least 1200 words, my minimum daily goal.

No jogging today, we have a foot of snow and it's still coming down hard.

Saturday, December 12, 2009

FROM HOME TO HOME

Well, the Poet boarded an airplane for Egypt an hour ago, and I am sitting in the airport (where there is free wi-fi) before my flight back to DC. We will be away from each other for a month.

The repeat question of the past two weeks has been, "why aren't you going to Cairo with him?" For now, a trip to Egypt would be too much, much too much. At last check planes across the country did me in, so traveling for 24 hours, to get somewhere full of automobile exhaust and people smoking in every indoor location would be too much for me. There may be a trip in the future, however, one that features a few short days in Cairo and more time in a less poluted part of Egypt. That is feeling more a more possible as time passes.

I have had a morning of good signs. First, I woke realizing that I had failed to take all my bedtime supplements last night, the ones that get me to sleep. I had slept through the night just fine without them!

After the injection and seeing the Poet off, I headed to the gym, where I jumped on the beloved stair climbing machine at the gym and stayed on it for half an hour, going at 80 steps per minute the whole time, with the exception of a couple minutes of "sprints" at 100 steps per minute. Less than a month ago, 60 steps per minute was my maximum speed.

I still long for the day when I will be able to dance again. It was January of 2009 that I had to stop dancing due to Lyme-related tendonitis. It has been a long, painstaking 11 months, with much of my time eaten up by myofascial release and physical therapy appointments. But the past two weeks I have been able to walk up the hill to my house without my calves spasming.

(True confessions: I have spent a good 10 months going up the hill backwards so as not to aggravate my tendonitis. Who is the neighborhood crazy lady? Moi.)

So I head back to DC feeling closer and closer to signing up for another dance class, and closer the end of Lyme Disease. Again, the hope is cautious, but it is real.

GOALS FOR THE MONTH

Over the past week the Poet and I have been talking about my writing. For the past 18 months I have been happy with piecemeal projects, as my energy and schedule (at the mercy of naps and doctors appointments) would allow. This has meant a book-length project from a few years ago is still on the shelf, blogging is sporadic, and short-stories get started, even completed, but rarely polished. Still, writing anything is progress at all!

This month I will have no appointments, so I will have large stretches of free time. What else should I do but write? The Poet knows I have been wanting to get back to my young adult's fanstasy novel, but he made a different suggestion: write something easier.

His idea was another novel, which I rejected flat out. Not another project, while I have so many others half-completed! Besides, he was really suggesting I write the type of novel that he wants to write. (Advice is always biased!) Mulling it over we agreed the fanstasy novel is still too big a project for me right now, but a memoir would be a realistic goal.

So I head to DC with the promise to myself that I will write 3-4 pages per day of a memoir.
Writing about myself is not my first choice, but it is much easier to write about material I don't have to make up. And I would like the satisfaction of taking on a larger project, perhaps one that I can take a little more lightly than fiction.

The plane is boarding. I'll post this now. (Thank you Google for free wi-fi at the airport!)

Saturday, December 5, 2009

KEEPING A CLEAR HEAD

I have turned over a new leaf this past week, getting up on the early side and going to the gym before my appointments. (This isn't that early, mind you. On my first day I was greeted by Molly, my cheery yoga instructor, with, "What are you doing here mid-morning?" So much for my idea of the crack of dawn!)

This usually puts me on the stair master about 30 minutes after the Poet has given me my Rocephin injection, and soon after my morning Minocycline so I imagine I am pumping the medicine through all the hard-to-reach tissues of my body. Sometimes my body feels a little heavy-herxy while I'm going up the moving stairs, but it doesn't slow me down.

It's really nice to get the jump start to my system, and also to have my exercise over for the day. The thing I like best, however, is that for the rest of the day I have none of the fuzzy-headed feeling I've been experiencing when I try to write.

Today, however, I slept an extra hour, skipped the gym, and went off to meet
my writing buddy Brian at the all-raw-vegan-vegetarian-not-even-eggs-in-site Chaco Canyon Cafe. (Since Brian has trouble getting himself to sit down just write his book, we meet once a week at a cafe with our laptops and write). And there was the brain fog again. I forced myself to work through it, but I realized I'd been feeling a little slow and sleepy every since the Minocyclene at breakfast.

So my plan from now on is to take Mino with breakfast if I am heading to the gym right away. Otherwise, I'll put it off until lunch, which is always followed by a nap, and see if my brain has an easier time functioning this way.

Tuesday, December 1, 2009

WHATEVER HAPPENED TO THE MALM and OTHER STORIES



The past month has gone by without a moment to post anything here. One reason is that I am trying (although not necessarily succeeding) to focus on other writing.
I was enrolled in a class on plot structure at the Richard Hugo House, Seattle’s non-profit writing center. When I signed up, I thought it would jump-start my fiction writing, which has been slowly cooking on back burners over the past year. Unfortunately the class went by mostly while I was in the MALM-induced limbo. The apartment was a wreck, and I had nowhere to sit down and write. (I still enjoyed the reading assignments and getting feedback on a story I’d written months before.)


Only in my last week of class did I get the bedroom rearranged with my old excuse for a dresser and the fabulous new writing desk. I’ve had a few good days writing there, now that the class is over.

Meanwhile Ghusun decided she wanted to buy the MALM from me, at the bargain rate of $70. This thing was a tar baby to the very end. Ghusun loaded the drawers into her VW beetle, but we couldn’t get the frame to fit into my car or the Poet’s. (She and I discovered this only after we had carried it down two flights of stairs and had it sitting out on the sidewalk. It was a sunny day, but since we live in Seattle we were convinced that it would start to rain on the MALM at any minute.) The Poet jumped into the chaos on his lunch break to help get the thing back inside, then a few days later drove it over to Ghusun’s condo, by what he and Ghusun called “the Arab method”: seventy-five percent of it sticking out of his car trunk, the whole arrangement tied together by an extension cord in lieu of rope.



When my prescriptions came up for renewal, two of my main medications, preservative-free Heparin and Rocephin, were temporarily unavailable from the manufacturer. I spent most of a week’s free time scrambling around getting my Rocephin from a different pharmacy, and then ordering the blood-thinner Lovenox from Canada, as a substitute for Heparin. Even at Canadian bargain rates Lovenox is about $650 a month, whereas the equivalent amount of Heparin bought in the U.S. is $250. My insurance covers the Lovenox, but it won’t cover the Heparin. Go figure!


Once I was over the stress of wondering whether I would have any medicine, David arrived for Thanksgiving week. Since the Poet had to work, I ran Camp Naomi for the first three days. David is almost nine years old and arrived still not knowing how to ride a bike. (???!!!!) By the time he left I had him riding all over the place.

Throughout it all I’ve been going daily to the gym to work up a sweat on the stair climbing machine and the rowing machine. It boosts the immune system and makes me sleep soundly every night. Hooray for strength at long last! Hooray for exercise! This is the corner I’ve been waiting and waiting to turn… I didn’t know that by the time I’d got here, there would be yet other corners I’ve gotten myself on the wrong side of. It’s turning out to be more of a five tetrahedra compound I’m trying to get myself around.

My calf is starting to feel a little better, but now my low back is hurting. When will I dance again? It’s not clear.

Robyn, my physical therapist, says she thinks the two are related, and as we begin to clear up the tendonosis through myofascial release the back issues my calves/Achilles were compensating for are now coming to light. And so it goes on…

Sunday, November 29, 2009

A GOOD DAY

From 3 pm until now I've been working on a short story, with only short breaks to take medicine and eat dinner. It's first time since the onset of this illness that I've had the time and energy to sustain writing for such a long period of time. (And now my brain is a bit fried, sorry if these sentences don't make much sense.)

I have been absent from the blog for a long time now, I'm hoping I'll catch up in the next few days.

Thursday, November 5, 2009

MALM 2, Naomi 0

I put up a good fight, but in the end the dresser got the better of me.

On the second attempt to put my clothes in the thing I was still smelling the fumes, less of them, but enough to make me slightly ill and extremely irritable.

My recommendation to those with chemical sensitivity: don't buy a MALM dresser. I've had no trouble with anything else I've ever bought from IKEA, so I don't want to knock them. And anything from the MALM line that doesn't have drawers is probably going to be fine. It was the inside of the drawers that were invincible.

Instead of shoving the thing out the window in frustration, we've decided to put it in David's room. David will be here soon for Thanksgiving and he has no dresser so that is a useful thing to do with it.

As for a new dresser for myself, I am giving up for the time being. I feel too traumatized by the MALM to risk myself again on another that will probably just break my heart in the end.

Fortunately I never got rid of my old dresser (if it can be called that). It is truly the ugliest piece of furniture I own, perhaps the ugliest I have ever seen, but it doesn't give off sickening fumes and for that I am grateful. I put my clothes back in it today and it felt nice to have them organized again.

Wednesday, November 4, 2009

MESSING WITH THE MALM


It’s been 10 days since my last post, and my readers must have been waking up each morning with one question on their minds: what happened to Naomi? Was she swallowed up by the MALM, or did she successfully cook it? Will her apartment ever rise out the chaos it has become?

Before I answer the question, I will remind my audience of where I left off. Unable to stay in the same room (i.e. my bedroom) with the new dresser that was making me ill from toxic offgassing, I decided to fight back by blasting it with space heaters until the fumes cooked off. At last report, I’d burned out the motor of one space heater, then decided that was good enough, I was going to put my clothes in the dresser.

HA HA HA HA HA HA HA HA HA HA HA HA HA HA! O how sick I felt while attempting to line the drawers with eco-friendly, unbleached parchment paper. Sick and irritable and tired of sleeping on the couch and having my clothes piled up on my bed and in the hallway. I just couldn’t do it anymore. I wanted to throw the MALM out the window and watch it splinter into useless pieces on the sidewalk. It hardly mattered that it would never fit through my miserable little window.

For twenty four hours I was down. “What did I do to anger the gods?” I wailed. “Why me?” And then I woke the next day with a new outlook. “I can do this,” I realized. “Sleep on the couch? Pah! Live for another ten days in chaos, what’s that to one who has been through the ravages of seven years misdiagnosed with chronic fatigue syndrome, what’s that to one who has braved two years of the harshest double-dosed antibiotics, who has faced a daily injection into her butt for the past six months? Bring it!”

I set the second space heater on the dresser. My plan was simple: one drawer per day. If twenty four hours in close proximity to raging-hot electric coils couldn’t cook the fumes out of a MALM drawer, then I would honorably concede the dresser was the greater man.

Day one: in the face of intense tropical temperatures the middle drawer spews its fumes into the atmosphere, leaving me choking and gagging with each foray into the bedroom. By morning the smell had changed to a warm, woody scent with only faintest traces of a chemical overlay. I keep the heat on two more hours before switching to the next drawer.

Day two: my mother reminds me that drawers can be removed, thus making it easier to point the space heater directly at the little buggers. The battle intensifies.

Day four: all the big drawers have undergone the Treatment, it’s just the top drawers left.

Day five: in the early morning I enter the bedroom to find it cool and dark, Poet wrapped tightly under his quilt. What happened to the heater’s warm glow? What’s going on?

The second space heater has died.

MALM 2, Naomi 0

Or, if you look at it differently:

MALM 2, Naomi 5.

The only problem was, I was running out of space heaters, fast.




The source for space heaters is Fred Meyer. Who doesn’t love this box store, where you can also buy ice cream makers and lottery tickets? Each trip to Fred Meyer is a chance to win the Mega Millions jackpot. Let’s go.

Three trips later I:

a) hadn’t won the jackpot and

b) had returned more defective space heaters than I care to go into detail about.

The last heater I bought, the most expensive Fred Meyer had to offer, was going to work, I was sure. It looked beautiful coming out of the box, but wait, what was the big red tag on the cord? It read “Caution: this product has been covered in a protective coating to safeguard it during shipping. Upon initial use of the appliance the coating will dissipate into the air and let off an unpleasant odor.”

At that point, I began to believe in fate. Not destiny, but fate. It was my fate, I decided, to sleep on the couch into eternity, while my boyfriend slept in the bedroom amidst toxic fumes and the continuous roar of the air purifier, an endless battle of mid-weight household appliances, with IKEA furniture thrown in just for fun. Sisyfus would understand.

I accepted fate. I plugged the heater in. I set it on high. If my air purifier went up to eleven, you know I’d have put it there.

The bedroom stank. So much that the Poet even noticed the smell and agreed an open window was a good thing. Things stayed that way, in a time that was beyond time, that stretched toward all horizons, infinity, contained in a messy bedroom. I decided not to care, I decided I would live my life as if this were forever. (I really can’t tell you how many days it was, I just stopped counting.)

And yesterday the last of the fumes softly slipped into the air purifier and were gone.

As I write this, I am sitting at my new desk with my new computer. I am a foot away from the MALM. I am in the bedroom. The air purifier is on low, so low you wouldn’t know it’s running if I hadn’t told you, and I am breathing easy.

I haven’t put my clothes into the drawers yet, but one of these days I will, maybe even tomorrow.

Sunday, October 25, 2009

MAKING OMLETTES




It's official. After running the space heater in the bedroom at full blast for three straight days, the thing has died.

As Lenin famously said about cooking, sacrifices must be made. In my case it was the source of warmth for our bedroom. Fortunately, the second heater (which is so bright we can't use it when we're sleeping) still works, so I have a way to keep cooking my dresser.

I've kept at throughout the day (day #4) and am about to declare the thing done. The outside doesn't smell at all. With drawers shut I can be right next to it and breathe easily.

I only get a wiff of the fumes if I stick my nose right down into an open drawer and really breathe in. And I'm so tired of keeping my clothes in laundry baskets in the living room that I'm ready to put aside my paranoia aside about the chemical smell seeping into my t-shirts while they sit the drawers, and just put my clothes in the damn thing at this point.


If my underwear does end up smelling like the chemical coating on a flimsy IKEA dresser, I'll take them out, wash them, and start the process over. For now, I'm ready to be done.





On the upside, with the aid of the air purifier running on high, I've been able to sleep in my bed for the past two nights. After the previous nights on the sofa it feels truly luxurious to stretch out on a mattress, even there is a pile of transient sweaters next my pillow.


In the end this is all about getting all my clothes and possessions rearranged into a paragon of efficient space management, thus allowing me to have a functioning desk with a functioning desktop computer on it, that is to say, a space of my own to write. For Virginia Wolfe it was a room of one's own, but for me it is coming down to a desk of my own. I envision this as not just opening up a space in the apartment, but also a space in my brain, somewhere I can go physically that will allow thoughts to develop and stories to gestate.


Friday, October 23, 2009

COOKING THE DRESSER


This is how you cook a dresser: with heat lamps. It gets the chemical fumes to intensify, which means you are baking them off. (You must read the previous post for this to even begin to make sense.)
In the case of my MALM, the smell is worst inside the drawers, so I am pointing the heat lamp at them one by one. I've been getting a little anxious about a) whether this will work, and b) when will it be over?
The chemicals are saturating the air, so at some level it is working. (My head started to hurt a little even while I was taking this picture.) But will it be enough that eventually I wont mind being in the same room as the dresser? And what about putting my clothes in it? Will they start to smell like chemical fumes as well?
For the past two days I've been staying out of tbe bedroom as much as I can, and sleeping on the couch. I miss my bed! Tonight I will try closing all the drawers, turning down the heat and seeing if I can sleep with the air purifier running.

Wednesday, October 21, 2009

IT'S ALL FINE


As I have made only passing reference to in this blog, along with chronic Lyme comes chemical sensitivity. For those who don’t know, chemical sensitivity means you feel irritated, exhausted or choked for breath around chemicals, especially airborne ones. By chemicals I am referring to molecularly altered, toxic substances that for some reason we, as a human race, have decided are a good thing to incorporate into every dimension of our existence.

In the world outside my house people are wearing perfume and hair gel, spraying innocent apples with pesticides and antibiotics, and spewing exhaust fumes into the air as they idle their engines for the sole purpose of eating their lunches while sitting in their drivers’ seats, parked, on beautiful 70 degree days, often at public parks WHERE THERE HAPPEN TO BE PLENTY OF BENCHES! (They are no doubt enjoying their car air fresheners.)

I am member of NRDC and the Sierra Club who will someday rule the world and ban all such disgusting chemicals from our lives, but on an immediate level there is not a whole lot a person can do about these things. I once approached someone idling her engine in the parking lot of a city park and asked her, quite politely, if she would mind turning off her engine. I got the finger.

I have since taken up avoidance tactics. When I am out in the world and a wave of airborne chemicals comes toward me I hold my breath and get away as fast as I can.

The tiny apartment is my only real sanctuary. Here you will find no cleaning products besides Seventh Generation, nor is there new carpeting, nor mattresses laced with fire-retardant agents, nor sheets that were not fathered by pristinely organic cotton plants. The shampoo in the bathroom contains no phlalates or sodium benzates any other substance with names more than three syllables long.

And yet at times I must buy new furniture. In the past I have bought much of my furniture at the Soaring Heart Organic Futon and Mattress Store. This a store where an air filter is always running although no toxins could possibly be malingering, and whose primary means of advertisement is in the Seattle food co-op’s newsletter, in the form of a small-print 500-word diatribe about mindfulness, crowned by a cartoon of a heart with wings. Month after month, this thing, which they consider an ad, never changes. In other words, it’s the kind of store I love and wish I didn’t love so much, partly because it’s embarrassing to be associated with that mindfulness over-indulgence, and partly because their stuff is really quite expensive.

The other place I’ve come to rely on for furniture is IKEA. Because IKEA is a fairly enlightened company, it turns out. They have standards about child labor and sustainably harvested wood and recycling and so forth. This includes not putting too many chemicals in their furniture. For example their particle board is manufactured by European standards, meaning next to no formaldehyde or other toxic chemicals go into it. I have been told by an expert on chemical sensitivity never to hang around particle board that wasn’t made in Europe.

And so, on a budget yet desperate to organize an apartment slipping toward the appearance of a rodent’s lair, I turned to IKEA.

And when I say turned, I mean I spent hours pouring through the pages of the IKEA catalogue, and staring dazedly around the tiny apartment, relocating beds and book cases in my head. I bullied Ghusun into driving down to IKEA with me, twice, and we wore ourselves out in the maze, I with my tape measure and notepad and Ghusun, for reasons only she knows, determined to see everything there was to see and file it away meticulously in her head.

And now this: the furniture has been delivered, and all is assembled. The computer desk I put together myself, I’m proud to say in under four hours. On the bookcase and dresser I sprung for an assembly service. The cute college kid who puts these things together arrived today and did both in about five minutes. They look great, and the dresser, the MALM, has been giving off noxious fumes all afternoon.

I first noticed when I was taking my nap. “Oh it’s nothing, a little an initial smell since all the pieces just came out of the box,” I told myself. But when I woke up it bothered me more and more, so that while putting my clothes into the dresser I found myself fighting the urge to run out of the house. The thing was undeniably making me sick.

I went into the living room where I could relax and possibly brainstorm. I pawed through the IKEA catalogue once more, and reviewed the money I’d spent on this thing: MALM $140, delivery $100, assembly $66. I could never get that money back from a craigslist sale. I also checked out the pure, noble, virtuous maple dresser on the Soaring Heart website: $1,200 and change, and not as big as the MALM from the looks of it.

Then I put on my jacket and ran out of the house. Once I had some fresh air in my lungs I did what I always do when I am panicking: I called the Poet first, then my mom.

“Well, why don’t you try to cook the smell out?” my mom said. We had done this before in my first months in Seattle, when I had briefly rented an apartment that turned out to be full of toxic fumes. Paint and other minor fumes can be cooked out by cranking up the heat and later airing things out, we learned. More substantive outgassers, i.e. new carpets made from petroleum derivatives, will keep letting off fumes for months, no matter how high you get the heat or how many fans you run.

So I got back home and turned up the heat in the bedroom. The Poet called me back and before I could get into full panic said why didn’t I just meet him at the bar and then we’d go out to dinner. “We’ll work it out,” he kept cutting in before I had a chance to get the details across about the heater running simultaneously with the air filter, the clothes piled all over my bed, the old dresser fighting for floor space with my yet-to-be-stashed file boxes and the reason why I had to sleep on the living room sofa tonight.

Once we were home he deliberately remained oblivious, then toddled off to bed where I found him already quilted and drifting off amidst the chaos, murmuring to me “this is fine, baby, don’t worry, it’s all fine.”

Thursday, October 15, 2009

A MESSAGE FROM MY MEDICATION


Everytime I see this I think "No, you flip off!" And then I think, I love you, Rocephin, what did I do to deserve those words from you? What could you possibly have against me? It must be one of those affectionate, ironic, 'f-you's' that only the closest of friends can share. Because, dear Rocephin, you're my bestie right now. Getting me better, one painful injection at a time.

So flip off, my darling Rocephin, flip off.

Wednesday, October 14, 2009

AN HOUR AWAY



My mom gave me a membership to the Seattle Art Museum for Christmas and so far this year I have not used it once. This afternoon I made it there for an hour. The Andrew Wyeth exhibit is about to close, which made it easier to push all the things on my to-do list aside and ged down there at last. I would have kicked myself for a long time if I'd missed those paintings.

The curator gave a 20 minute talk about this painting, Brown Swiss. She seemed to know everything about Wyeth, which was interesting enough, but the experience of standing in front of the one painting for 20 minutes made me look and look and look at it, until I was in a state of marvel. The bold shadows across the field, the way he creates the hills with just inferences, the symmetry between the pond and the shadows across the earth. I could go on and on, but here's my favorite thing: at first glance the house's reflection in the pond is the mirror image, but if you keep looking you see how the perspective in the pond is slightly shifted, because the angle of the water's reflection and the angle of the viewer's gaze toward the house is different, of course!

Friday, October 2, 2009

A HAPPY DOCTOR

Just back from my appointment with Dr. Martin Ross. I told him how well I am doing on Rocephin and he was genuinely excited for me-- more than I am yet. It was nice to see him laugh and smile, even if I am not quite ready to give in to jubilation.

I did dare to ask him what the end of treatment would look like. I haven't asked this question of him or any other doctor because I haven't yet in all my years of illness come even close to having that be a relevant question, but perhaps now it might be... who knows when but I might very well get there.

Dr. Ross said he keeps treating until patients feel they are 100% better, then continues for two more months to be sure the bugs are beaten down enough that the immune system can take care of them on its own.

And if people never reach 100%? I asked.

He said yes, there are some people who have to accept they have some permanent damage from Lyme. In that case he will keep treating until the patients feel they have reached a plateau, then two months past that. He then switches to a low dose of antimicrobial to help the immune system.

So I will fall into one of two categories. I have decided I will do all that I can to be in the first.

The management of my recovery can really drive me crazy. Just yesterday I had quite a few moments when I felt overcome with despair at the drudgery of my life right now. And now today I was reminded that all the little tasks that try my patience are the most important thing in my life right now.

That means redoubling my patience, sticking to the routine, and especially keeping up the exercise that is building up my strength and my immune system every day.

That said, it's time for my nap.

Tuesday, September 29, 2009

LESS AND LESS

Since the start of the summer I have cut down most of my supplements by half or more. Half the iodine, one third the Vitamin D, one third the zinc, one third the herbs for my liver. Before I’ve cut my vitamins down and then just had to increase them again a few weeks later when my symptoms flare up, but this time that hasn’t happened.

In fact, I am feeling better and better. After four months on Rocephin, things that used to tire me simply don’t, and my energy feels steadier throughout the day. I go to the gym and push myself and instead of collapsing later, I can feel my endurance improving.

I have moments when I catch myself in the simple reassurance of the strength returning to my body, and realize I have an unquestionable feeling this strength will get me over this illness. I imagine myself free of taking pills around the clock and going to doctors, and I wonder if I dare to trust that life will come through, just this once, on the promise it holds out to me. And then it turns to a prayer: O please, let things be straightforward this time.

Sunday, September 27, 2009

TASTE BUDS

Carolyn Humpreys once sold me a fermented soy liquid that she considered an elixir. She had just received a shipment of this brownish grayish drink and told me I should try it for whatever problem I had at the moment. “It’s so nutritious. It stimulates your body to take care of whatever’s wrong,” she said.

My attitude towards supplements is mixed. On the one hand, the right supplement can work wonders for all sorts of problems, from headaches to insomnia to bad breath. On the other hand, once you’re up to twenty different supplements a day, the cost adds up as does the hassle of remembering to take them all at the right time. So when the prospect of taking a new supplement arises, I think twice.

In this instance, Carolyn’s enthusiasm for the soy elixir was so great that she won me over.

“The people I’ve put on it are doing really well. You might even be able to drop some of your other supplements just from being on this.”

I bought two bottles and put them in the refrigerator when I got home. When I opened one, I found the taste was a mix between old gym socks and cat piss.

Over the next week I tried to remember to take the soy stuff at the right time—or at any time. But since it was out of sight in the refrigerator, and since it tasted so disgusting, it was easy to forget. In the end I decided to accept reality: I wasn’t going to drink this stuff.

Carolyn was completely understanding at my next appointment, and took back the unopened bottle for a refund, but what to do with the opened bottle? I knew she couldn’t give me money for it, but I suggested she might have another patient who would want it—the stuff was expensive and I didn’t want it to go to waste.

“I’m not allowed to do it for health reasons,” she said. “What about the Poet?” The Poet [my boyfriend] was also Carolyn’s patient and just so happened to be out in the waiting room.

“But he doesn’t have Lyme. It can help him with ________?” I asked.

“Oh yeah,” Carolyn said. “It helps with all sorts of problems.”

I was still skeptical. “I don’t know, given the way it tastes it’s going to be hard to get him to take it.”

“You never know. Some people love the taste.”

“You’re kidding,” I said.

“No, if your body needs it, your brain can sometimes help you out. I have people who swear this tastes like chocolate. All kinds of people tell me supplements taste like chocolate.”

Feeling a bit like I was in a Life cereal ad, I followed Carolyn out to the waiting room and offered the soy beverage to the Poet.

“You might really like the way it tastes,” I said helpfully. He looked interested. We poured out a tablespoon and he put it to his lips. He swallowed.

“Well?” I said, eager to see if Carolyn’s theory was true, if this was a real elixir that would solve all the Poet’s problems, make his brain turbo charged and his body full of energy, sleeping soundly at night and waking each day full of happiness, and if that were the case, would his taste buds tell him the drink was like chocolate and cry out for more?

“Well?” I asked again.

“That’s disgusting,” The Poet said.

Carolyn nevertheless told him what a panacea it was, and since the price was right (free) he was enthusiastic about it. He even, if I recall correctly, gave me some money for it. We took it home again and he finished the bottle, and perhaps, among the other supplements he was taking, it contributed to the gain in health he had while he was going to Carolyn. Who knows.

Last night I remembered Carolyn and this incident. Around 10:30, I mixed up a drink of filtered water, powdered algae (cracked-cell-wall chlorella to be specific), a few drops of silica with sunflower oil, and a few drops of electrolytes. I drank it, as I do every night at bedtime.

Throughout my life I’ve had many memorable drinks: a Newcastle Brown Ale after a long rugby game, dark hot chocolate for breakfast at a hotel in Paris, the grapefruit soda sold at street stands in Buenos Aires, and in Mexico I liked to sweeten my cafĂ© con leche with the full-flavored black sugar I found at the market. But last night as I drank the mix of algae and silica, I thought, that tastes really good.

And then I realized that I had just thought that— about algae. It didn’t taste like chocolate, but it was good. I actually enjoyed it. Carolyn’s theory must be true after all.

Tuesday, September 22, 2009

TIME


When I started this blog, I imagined I would write things in real time. The problem with this idea is that real time is happening in real time. When David visits, I am face to face with my limitations, and also the breakthroughs I’ve had since his last visit, and I want to write it all down, but there isn’t a moment to make it to the computer. Likewise for so many days and moments, and this has been my pet frustration as I slowly, steadily recover from this terrible illness: not enough time to write. Days are still full of the hassle of being sick and having to constantly take care of my body, even as I have more strength and feel better throughout it all.

In DC Last week, amidst a few days of nausea, a weekend trip to dear friend's and packing my small personal pharmacy to head back to Seattle, I managed to do something I’ve been postponing for a long time: put together the two quilts I have been working on. This requires floor space. That is, somewhere besides my tiny apartment, so I got it done during the stay at my parents’. I asked my mom to take a picture, and haven’t had a chance to post it until now.

I highly recommend anyone who is sick take up some kind of craft activity. Quilting was great for me because I could do it in bed during the long dark years when I spent most of my time there. It was the one thing I could count on to keep me calm and happy, no matter how bad things got. Now it still brings a sense of solace and accomplishment to stitch for half an hour before I go to bed, especially after a long hectic day of appointments and sorting out miscommunications between doctor’s offices and pharmacies.

Thursday, September 17, 2009

HEALTH CARE REFORM OR A BOOST FOR THE INSURANCE COMPANIES?

Here's one article in the New York Times that sheds some light on Max Baucus's plan.

No government option.
No requirement that employers provide health insurance
No Medicare negotiation on pharmaceutical prices
Government subsidies for the poor and lower middle class who would be required to buy private insurance (= a tax-dollar funded subsidy ending up in the hands of private companies)

Yes, there are some taxes here and there on the insurance companies, just enough for them to have something to protest about so it doesn't look as if they wrote this bill themselves.

No wonder health insurance stocks rose yesterday.

I am going to call my Senators and tell them I hate this bill!

Wednesday, September 16, 2009

FLYING HIGH

Written a thousand miles off the ground and posted later.

Physical therapists are the bomb. Physical therapy for my tendonitis has been a godsend, and in the process I have learned valuable things, like how wearing clunky, unfashionable shoes can make you happy.

In fact, I now have two physical therapists. The second one is the amazing Liz Waldner, who is helping me with my stiff neck, headaches, tight jaw, teeth grinding, et al. She has been working with me to shift out of the rounded back, head-thrust forward posture I tend to slip into when I am reading, writing, etc.

(You must be thinking that I go around hunched over like a Quasimodo, but that is in fact not the case. Or so Liz has reassured me. “We all do this,” she says.)

This all relates back to my latest obsession, Lymph Drainage. Ever since I stopped dancing I have had terrible problems getting my lymph to drain. Lymies know the symptoms: headaches, swollen lymph nodes, that congested feeling in the armpits and the groin, general malaise. On Rocephin it’s gotten worse, and I am compelled to do huge bouts of exercise daily just to keep the systems in my body moving.

According to Liz posture plays in as well. If I can keep my chest open and neck straight, the lymph will drain more freely. I have been noticing this is true over the past few weeks, and I have tried, whenever I remember, to engage the middle back and drop my tail bone down just a little while I am sitting. This brings the shoulders gently back and opens my chest. I always feel better until I slip back into my habitual hunch.

I think over the past two weeks in DC my posture has gotten a little better—at least enough to for me to now notice when I am really uncomfortable and doing my lymph a disservice. For example, when I am typing at my laptop computer: totally hunched up.

And now today, on the plane home to Seattle I have had a revelation.

I have always been miserable on planes. I get blinding headaches, preventing me from reading or watching movies to pass the time. I also have become violently ill from flying. On one terrible flight I sat through a particularly rocky last twenty minutes before landing trying desperately to hold onto my cookies. I tried to put my head between my legs to help with the sickness, but United Airlines no longer accommodates such luxuries—my forehead hit the seat in front of me. So instead I put my head in the aisle. The stewardesses bumped into me as they strode past, but it was better than the alternative.

We landed to everyone’s relief except mine. Instead of getting better, my nausea got worse. Then we sat and sat, waiting for a gate to open up. I fumbled for the airsickness bag just before I lost the contents of my stomach. Not feeling much better, I shakily pulled down the tray and put the bag, hoping a stewardess would come by. I rang the bell, but evidently no one was allowed to get up in that situation, because no stewardess arrived. For an endless ten minutes as we waited to be allowed out of our seats, I sat with a bag of my own vomit on a tray in front of me. No one asked if I was OK.

So needless to say I don’t look forward to airplane trips much. To add to my apprehension about today’s flight, I’ve had headaches and nausea over the past few days without even coming near an airplane. I managed to get over the worst of it, enough to think it might be OK to fly, but not enough to feel happy about it.

As soon as I took my seat a headache started up. We hadn’t even pulled away from the gate.

I noticed that the head cushion (unremovable) was thrusting my head and neck far forward and forcing my back into that terrible hump. There was no adjusting possible. Was this really causing all my trouble?

The night before my brother had given me a midsized hardback novel he thought I would like (Michael Chabon) and I had hastily thrust it into my backpack on my way out the door. I had little hope that I would read on the plane, but it turned out to be the best move I’ve made in a while.

Sitting hunched up in the ergonomically evil airplane seat, I thought of the book (who wouldn’t?), pulled it out and placed between my back and the seat. Voila! My back was brought forward just enough, I could now comfortably rest my head against the immovable cushion behind and everything was in alignment. I felt much better.

As it turns out, due to Swine Flu there are no pillows on airplanes anymore, so I have spent the entire flight with my brother’s book behind my back. And I have felt great! Tony the Tiger Great. Thinking happy thoughts, no headache, and hardly any nausea. (For that I have some fiber and charcoal capsules and they are taking the edge off. The nausea is only an indication that the lymph is draining, down into my unhappy stomach.)

Reading my book is, of course, not possible, but fortunately I wasn’t planning on it anyway. I brought my quilting on board and I have been stitching away, until I was inspired pull out my computer and write this post. Using the laptop is not ergonomic nirvana, but with the hardback in place it isn’t giving me a headache either.

Friday, September 4, 2009

Chronic Lyme Gets Mainstream Attention

I am a secret fan of Diane Rehm. Way back, when I thought what I had was chronic fatigue syndrome, she did a show on it. Now she's done a show on Chronic Lyme.

Sunday, August 30, 2009

TOO MUCH




For the past two months I have been living by one precept: I won’t sleep if I don’t get enough exercise during the day. I am on a constant rotation of stair machines, swimming, power yoga and powerish walking. I am suddenly in wonderful shape, fitting into the jeans that I was too fat for a few months ago.

I also have days when my body cries out for a break. ‘You'll kill us with a big workout every day,’ my muscles scream. On those days I let the hours slide by, and in the evening I take a slow walk 10 blocks up and back on my street. At bedtime I am wide awake and I spend most of the night that way. The next day I am back at the gym.

At some point I was going to truly collapse, and that’s what I got after a night of little sleep, a big workout, a five hour plane flight, and another workout the next day. I did it all in hopes of keeping myself in balance. What I got instead was the opposite: too exhausted to sleep, too exhausted to move around.

I spent yesterday feeling as if my bones had been through a bone crusher and my muscles had been through a muscle crusher. In fact, such a machine exists, with both functions combined into one and having the added advantage of putting your body clock at odds with the schedule of those around you; it is called The Airplane.

Now, after years of practice my brain is pretty much stuck in the groove of constantly thinking about how to avoid physical discomfort: take pills at the 15 different proper times throughout the day, eat the right foods at the right times, don't eat the food that make you feel like a car crash, don’t lie down in bed too long, but do take naps, give myself daily injections and get others to give me more daily injections, if I can’t sleep try taking more chlorella, if my legs ache try taking Heart Gems (yes, I take a supplement called Heart Gems!) but not too many or you might not sleep, etc. Flagging in any of these duties brings on some form of physical discomfort —headache, insomnia, nausea, fatigue, etc. I put this all under the noble label of Taking Care of Myself and Keeping My Body in Balance, but really I am just trying to keep from feeling rotten.


Yesterday there was simply no way around it. I was going to feel bad. All I could do was get myself fed and lie on the couch, working on a quilt. I hurt too much to do anything else. At night as I lay wake in bed, having tried all the supplements that usually get me to sleep, I started to panic. I ached all over, I was exhausted and I just couldn’t drift off. I had failed to keep my body in balance! And then I remembered there is another approach I used to take when things were just bad all the time: acceptance. I thought, well, this is the antibiotic treatment for Lyme Disease. What do you expect? Sometimes it’s just going to feel awful and there will be nothing you can do about it.

And yes, that was a comfort. Simply accepting that I felt pretty rotten helped. I got up and searched through my old cassette books on tape and found an Agatha Christie to listen to, and lay down in bed and felt how tired I was and told myself that was OK.

Thursday, August 20, 2009

INTERIOR DEGRADATION


















On my return to Seattle two weeks ago, I took a look around the apartment and decided things had to change. And I wasn’t just considering the dust The Poet let accumulate in the month I was gone. The piles of books on every horizontal surface; the bags, shoes and DVDs stored on the floor for lack of shelves; the futon/sofa with the broken slat, filthy cover and futon itself perennially slumped halfway down the frame; my medical supplies sprawled across the dining table. And lastly, the kitchen table, which has turned into a sort of desk for the Poet. (seen in the picture.) This is how far things can go when you don't reign them in.


Because at last I have the energy to do something about these things, at last I’ve reached the crisis point when I just can’t take it anymore.

So, between medical appointments, I’ve spent two weeks running around to places like Storables, and considering whether I can afford a new sofa that is non-toxic (the answer is no, absolutely not) or whether I should put the effort into fixing what I’ve got (yes, because it's all I can afford).

Is this getting on with my life? I’m really not sure. So far, the apartment doesn’t look all that different. It’s going to take a few more weeks plus a trip to IKEA before I have the transformation I really want, and I'm not sure I'll ever get The Poet to do anything about the piles of books in the kitchen corner.

Meanwhile I am not writing, not the blog, not anything. I miss it, and I feel my brain is succumbing to a vapid, all-encompassing preoccupation with consumer choices. I am telling myself this is a necessary step before writing. I am thirty six years old and my apartment compares unfavorably with a rodent’s nest. When things are respectable I’ll start to write again.

Thursday, August 6, 2009

HOME AGAIN

I'm back in Seattle after a long, fabulous visit to my family. When I arrived last night our apartment looked familiar and strange at the same time. And also tiny! (It is.) I had been missing The Poet so much, but I was also tired from the plane that I wasn't swept away at our reunion. It was still very, very nice but mostly what I felt was I had a headache. I hate it when I'm too tired to feel what I normally would feel.

I was so fried from the plane I couldn't sleep-- I took extra herbs and vitamin E and lay in bed for awhile, but in the end I got up and ate the homemade ice cream (sweetened with honey) I knew was in the freezer. Alone in the kitchen-living room I took a deep breath and realized our apartment smells like cardamon with a hint of jasmine, plus a very faint smell of old books. It made me happy. These are all smells of The Poet, and mixed together they are also home.

Wednesday, August 5, 2009

ONE WAY THINGS ARE BETTER




I used to drink down vast quantities of water. Remember the story about the girl who took ecstasy and drank so much water that it killed her? That was me, minus the drugs, the glow sticks and death. I drank water constantly, and not just any water: high quality bottled water or water filtered at home with my absolutely fabulous Nikken filter. Buying water when I was out was dicey—Dasani or other cheap brands gave me headaches, tapwater was unthinkable. I never left the house without my 20 oz stainless steel water bottle already filled.

This was not just out of compulsion. If I ran out of water, within a half an hour I’d feel thirsty, and soon after that get tired. When my Nikken filter arrived via UPS, about three years ago, there was some assembly required—it contained many different parts that needed to be flushed out and screwed in place and the task looked daunting, given my general energy level. So I only motivated to do it when I ran out of bottled water. Putting that thing together had to be easier than going the store to buy more water, right?

Only I got thirsty in the process. And more thirsty and then tired, until I stopped reading the instructions in order to take a little rest. When The Poet showed up forty minutes later he found me collapsed on the bed. I asked him to bring me water from the co-op. As soon as I drank a few glasses I perked up and put the filter together. I have loved it ever since, because with it I never run out of water.

Now I am in DC visiting my parents, and I am drinking environmentally sinful bottled water, so it’s easier to keep track of how much I drink. And I have noticed something: I am drinking less. I used to drink one and a half gallons of water a day; now it’s close to half that. Today I put a half liter of Evian in my purse—just a tiny half liter!—and headed out on foot in the 90 degree heat to shop and hang with my niece and brother. When I got home four hours later I’d drank only half the bottle.

What difference does it make? It means fewer trips to the bathroom, and it means I am free of the hulking bottles I’ve been cramming into my shoulder bag. A lady-like half liter is adequate. That makes life much easier.

Monday, August 3, 2009

WHY LYME DISEASE MAKES YOU DO SMART THINGS

Since I've been sick I am unable to function without one nap a day, sometimes two. And I'm not embarrassed about it. Read here for confirmation that it's a good idea.

Sunday, August 2, 2009

A CAPITOL WORKOUT AND EXPLODING DOG


In order to sleep at night I need to move around a lot during the day. I am not up to running yet, and with my Lyme-tendonitis there are limited things I can do—biking outside is not OK, but riding the exercise bike is; walking up steep hills or hiking is impossible, but stairs are OK. (Go figure,)

The best workout I’ve found while I’m staying with my parents in Washington DC is to walk to the US Capitol grounds, a mile from my parents’ house, then bust my butt up and down the huge flights of stairs just installed for the underground visitor’s center. (They look tiny in this picture, but believe me, they're not.) If I make it up and down twenty times, plus the two mile walk, that’s a good workout. Considering before I started the antibiotics for Lyme I was tired at five blocks, whole thing makes me pretty happy.

Today I brought the family dog, Kramer. When she comes along, I tie her leash to railing at the top step and give her a pat each time I come up. Today I was on my eight ascent, taking the stairs two at a time, when a Capitol cop at the foot of the stairs stopped me.

“Excuse me, ma’am,” (I hate being called ma’am. It hasn’t been long since I was getting carded buying cooking wine at Trader Joe’s. Now I am a ma’am.)

“Excuse me, ma’am,” he said, “you can’t leave your dog by itself there.”

“But I’m not leaving her,” I explained. “I’m just going up and down the stairs for exercise.”

No matter. Apparently from the vantage point of some cop on the huge plaza at the top of the stairs, there was an abandoned dog whose owner kept showing up from time to time to pat it, then abandon it again.

“She’s considered an unattended package, ma’am.”

?????????????????

“It doesn’t matter if it’s a backpack or a dog, it’s still an unattended package, and you know what a threat unattended packages are for us.”

I was torn between being horrified at the thought of-- what?-- feeding explosives to the family pet?-- and laughing at the preposterousness of it all.

I was about to point out that a skinny dog whose owner is always in sight of her, whose owner is in fact returning at sixty second intervals while she exercises, is not an abandoned backpack, but I thought better of it. Lots of crazy people come to the US Capitol, and some of them try to kill tourists and the Capitol cops themselves, so there are rules and the job of the cops is to enforce the rules. Even if this guy could see perfectly well that I was just a goofy girl (or should I say lady?) who lived nearby and was trying to walk her dog and get exercise at the same time, he had to follow the rules.

I unhooked the leash from the railing to head for home when I had an idea.

“Kramer, do you want to go up the stairs with me?” I asked. I didn’t have high expectations. Kramer weighs in at thirty pounds, and although her wippet ancestry has made her quite a sprinter, she has a neurotic aversion to stairs.

Well, she bounded up those stairs lickety-split. I think she found being compared to backpack so insulting she had to show the guard a thing or two. I had to hussle to keep up with her, and even the down leg, usually the most unnerving for Kramer, posed no problem. After about seven rounds, her tongue was close to hitting the granite pavement as she dragged behind me. I decided to call it a day.

The guard had been watching us the whole time, just in case Kramer exploded, I guess. When we left I thanked him and he gave me a wave.

Wednesday, July 29, 2009

DR X PART TWO, THE START OF A GOOD THING

Continued from the previous post

In the months before I went to Seattle I had been in the depths of despair, and I went to see a therapist for a little while. When I told her my decision to go see Dr. X, one comment she made stuck with me. She said, “Well, if you have been sick for six years you shouldn’t expect to get better in just a few months. I would think it would take quite some time to reverse what has been going on in your body.”

I don’t know if for other people it has been this way, but while I was the most sick, especially when I didn’t have a diagnosis or any way of making sense of it, I lived with the amorphous idea at the back of my mind that at any moment I would be cured quickly. It wasn’t something that I consciously expected, I certainly worked with doctors and gave them time to help me (I gave one acupuncturist a year before realizing I hadn’t made progress); it was just that it continued to seem so absolutely strange, so alien to me that I couldn’t get up and walk around, that the opposite of this state of affairs, i.e. a simple cure, seemed of course the most normal, natural thing in the world, like water running downhill.

So when this woman said to me it was only logical that it would take some time for me to get better, even with the best doctor, it wasn’t exactly what I wanted to hear. It did, however, bring me down to earth. I realized I had been secretly harboring a childish expectation, and it was time to put it to rest. I would go to Dr. X with an open mind, and I would give her time. I couldn’t expect instant miracles. The plan was for me to spend three months in Kirkland, a suburb of Seattle, getting as much medical care as I could before I returned to DC and continued with treatment I could do at home in DC.

My mother and I arrived at our first day eager and excited. When the appointment finally started, an hour and a half after it was scheduled, we weren’t disappointed. Before I arrived Dr. X had asked me to write out a medical history, starting from before my birth (was their anything while I was in the womb?), and she went over this in detail. She asked a myriad of questions about my illness now, and wrote up a list of tests she wanted me to get done right away. When I told her I was concerned I might still have parasites from my time in Mexico, she called a doctor at the University of Washington with expertise in that area, and asked him what test she should be running for me. These were added to the list.

As an osteopath (OD instead of MD), Dr. X believed the alignment of the bones had an effect on the health of the body, and vice-versa. After the medical history she did a twenty minute physical exam, with an assistant taking notes on the length of my legs, the minute torques in my hips, the tension in my neck and arms, etc. Before she was done she had her receptionist scheduling me to get orthodics and see a dentist to begin an elaborate process to correct a misalignment in my bite, which was causing me all sorts of TMJ-related headaches.*

By the end of that first appointment, I was hooked. No one had ever taken that kind of time with me, cared so much about my symptoms, or made that kind of effort to work with other doctors. When we left I was tired and very hungry—it was close three o’clock and we had arrived at the office at ten am—but I also excited and hopeful once again.

As we ate an extremely late lunch after the appointment, my mother and I talked over events. The most surprising thing had been that Dr. X was extremely overweight. (Just to round out the description, she also had short white hair and a friendly smile.) My mother said despite her weight, Dr. X gave the impression of being strong. I had to agree, she somehow didn’t look unhealthy, although we usually equate obesity with poor health in our society. When it comes to doctors, we expect them to at least look healthy. Perhaps it was Dr. X’s confidence and strength of character that kept us from judging her too quickly.

One thing was clear from our interactions with her: she was going to do things the way she thought was best, ad she didn’t really care what anyone else thought. Her medical practice was radically different from any other I had encountered, and it impressed me that she had the wherewithall to pull it off.



* These things turned out to be fabulous turned out to be fabulous. The dentist made a small appliance that fit over my teeth and was calibrated to make my bite line up in the position that would have my jaw, head and spine as relaxed as possible. My upper body had been locked with tension for years, but I felt the change as soon I started using it. It worked beautifully.

As for the orthodics, once I had them most of the aching in my legs went away. I still tired out very quickly, but I no longer had the immediate sensation when I stood up that my legs just couldn’t handle it. With both the dental appliance and the orthodics, the quality of my tiredness changed. This may not sound like much, but it was. My body was no longer a tense gridlock of aching muscles, day and night. I could actually rest, that is, lie down and feel a sense of peace, my whole being now hummed with the productive work of rest.

For anyone dealing with this kind of chronic fatigue, I suggest looking into orthodics. They are relatively inexpensive and insurance usually covers them. The appliance for my bite was not at all cheap, but worth it if you can afford it and are absolutely miserable with TMJ. This a world away from a normal night-guard any standard dentist will give you. The dentist I saw was Dr. Rhys Spoor.

Monday, July 27, 2009

HISTORY: DR. X

Looking back on the eighteen months I spent as Dr. X’s patient, much of it is hard to explain. Those who have been in my position—cripplingly sick for many years without a diagnosis or treatment—might understand. The irrational decisions made by those facing death we tend to forgive. Someone who is facing a lifetime of constant suffering, followed by death, may make decisions that are just as extreme, or just as compromised. There is nothing keeping her from the terrible abyss but hope of a cure, so she searches out one medical solution after another. She will never stop searching, and as the first choices fail she will look further and further afield simply to have hope.

By the time I reached Dr. X, I had been sick for five years; for the last four, standing on my feet was a colossal effort and I spent the vast majority of my time in bed, listening to books on tape. At the start I was twenty six years old, at the end I was thirty one, and I was living in my parents’ house.

The doctor immediately before Dr. X was Dr. Wu, a sixty-something Chinese acupuncturist who read the energy in my meridians with a computer program and a sensor that plugged into his laptop. He spoke little English, but enough to tell me “you don’t worry, I take care you,” as he put twenty or more needles in my body, then draped a sheet over all of them before leaving me to fall asleep for half an hour.

I would leave Dr. Wu’s office with a brown paper bag of dried seed pods, bark and twigs. I boiled these up in a special clay pot, three times for forty-five minutes each, each time pouring off half the brew and adding more water. The final product I kept in the fridge and drank several times a day.

Soon I saw some improvements—sitting up wasn’t quite so exhausting. I felt calmer, clearer-headed, perhaps a little stronger. Towards the end of the three months I tried walking very short distances, then even a few blocks at a very slow pace, and was happy to find that I was alright afterwards.

Then came the day I tried to walk the same short distance and found myself exhausted and aching in a way that was all too familiar for me. I went back to Dr. Wu and tried to explain the problem to him, but he seemed not to understand. There was something fundamental he was missing. If his English were better (or if I spoke Chinese) perhaps I could have explained it. I rested and hoped for a return of that little bit of lost energy, but as weeks passed my despair grew. The only way out I could imagine was death.

I remember crying uncontrollably at this time. I was unable to tell my mother how bleak things were in my mind. All I could say to her was, “I don’t know what I should do. There is nothing left for me to try. What would you do if you were in my position?”

“I would call Dr. P,” she said. “You haven’t been in touch with her for a long time, and she might have some suggestions.”

Dr. P was an extremely kind, slightly absentminded MD, one of the few medical doctors in DC with respect for alternative medicine.

Of all the doctors I had seen, Dr. P had produced the most lab work confirming there was, indeed, something biologically wrong with my body (low nutritional levels, high markers of toxic substances and adrenal function close to zero). She was still far from having a complete picture of what was wrong with me, and all her attempts to treat me had backfired, sending me into week-long relapses. This was no different than other practitioners I’d been to, but when I called her tell her things went wrong she didn’t blame me—and that was different, so I kept working with her. She earned my respect in the end by telling me honestly that she did not know herself what to do. Her first suggestion was for me to go to a doctor in Seattle, but I wasn’t ready to go so far from home, so she told me about alternative therapies in the city. Dr. Wu was the sixth practitioner I had tried since then.

When I called Dr. P that late spring of 2004, having given up all hope on a cure from Dr. Wu, we agreed I’d tried everything in Washington worth trying. She suggested again I go to Seattle. When I told my mother this, she surprised me by saying it was worth considering.

I, on the other hand, was skeptical. I had been to so many doctors, in Mexico where I had first gotten sick, and then here in Washington. I had been to John’s Hopkins University Medical Center. I’d been to doctors praised to high heaven by friends of friends whose symptoms were close to mine. A parade of Western doctors had run tests that turned up nothing. I had tried acupuncture, homeopathy and vitamins, acidophilus and biofeedback, cranial sacral therapy and Nambudripad’s Allergy Elimination Technique. I had even been to a specialist who had wanted to operate on my sinuses, although I had no problem with my sinuses.

And here was the thing: all the doctors I’d been to (with the exception of the sinus guy) offered plausible explanations for my illness. In the initial visit they diagnosed me so well I was sure I had found the answer to my problems at last. And each course of treatment ended much the same way: my body was pushed too far, without any means for recovering from Lyme disease, which was really what was wrong with me, although no one knew it. For all my money and effort, I wound up feeling worse, with my hopes torn to pieces.

After five years of that, why would I go to Seattle to see another doctor who probably didn’t know how to cure me either? Dr. P insisted that she would know how, but I remained doubtful.

A phone call was arranged. As a journalist, I had a list of questions for Dr. X. How many patients with symptoms like mine had she seen? How many patients had she seen who reacted to treatments in the opposite way than what she was expecting? (This was often the case for me.) What would she do if something she tried didn’t work?

For all my questions she had answers that convinced me she was willing to think creatively, if her effort failed she would not simply blame me for it, as most doctors did, but go back and reassess her own work. This was more than anyone had done for me so far.

On the other hand, as a journalist I knew this was her own version of events, and it was always worthwhile to get a different perspective. I asked if I could speak with her patients.

Her office sent me a list of seven patients who had agreed to speak with me. I called them all. Each had gotten nowhere with standard medical care but had made great progress with Dr. X. Some were at the end of their treatment, others had only been with her a few months. Each had at least one symptom that overlapped with mine, and all had good things to say about Dr. X.

One other thing I heard over and over: she is not a normal medical doctor, she will do some unusual things, but if you keep an open mind she will help you.

So it was that my mother and I boarded a plane to Seattle in June of 2004.


This story continued in the next post.

Wednesday, July 22, 2009

LET'S GET COUNTED

The California Lyme Disease Association is conducting a survey to help Lorraine Johnson, (JD, MBA) in her testimony before a panel to set new Lyme treatment guidelines. Up to now the official Lyme treatment guidelines have been terrible, spreading misinformation and promoting ignorance about the disease.

That could change, thanks to a Connecticut court case. Ms. Johnson is a Lyme patient advocate who will try to give a complete picture of what Lyme is really like. Help her by filling out this survey. Click here.

Tuesday, July 21, 2009

KEEP CALLING

If you have any doubt about where all the money that should have gone to cover your antibiotics and doctor's visits went, read here.

It turns out that Max Baucus, Democratic Senator from Montana and Chairman of the Senate Finance Committee, has been accepting campaign contributions from BlueCross BlueShield, the same people I was on the phone with last week, the same people who have been denying my health care coverage for years, not to mention throwing out my claims forms, etc, etc.

This company does not operate in Montana, and has no business giving this guy money except to encourage him to prevent meaningful health care reform from happening.

I just called his office and told them I think Mr. Baucus should support meaningful health care reform with a public option. The receptionist said thank you, he would pass the message along.

It's not much, but it's at least something. Let's call in and let him know sick people from across the country want him to do something to help them!

Here's the number: 202-224-2651

BlueCross Blue Shield and all the other insurance companies have all the money they've skinned off of us, and they have used it to dole out $3 million to Max Baucus over five years. (It truly pisses me off!) The system is corrupt, we all know that. But let's call anyway. Obama is putting everything he's got into this, let's show what support we can!

Call your representative, call you Senator, and for goodness sake, call Max Baucus, because chances are good he's accepted money from your insurance company, too! The deck is stacked against us, but if health reform doesn't go through, do you want to have to accept that knowing you didn't even call???

Thursday, July 16, 2009

WORKING THE PHONES

So this morning I had to call the insurance company. I went into it with the best, most positive attitude. Yesterday I'd sat down and read through my plan description for an hour, and was pleased to find that the latest round of denials (of all my prescription claims) was completely unfounded. My prescriptions are clearly covered. I was stoked up and ready to send in my appeal.

Before I can send in my official grievance, I am required to call Member Services because "usually concerns can be cleared up by just gathering more information."

That is, you call them and ask why your claim has been denied when clearly it should be covered, and some pitiable person with a lousy job tells you it's all perfectly reasonable for your claims to be denied and you are completely mistaken to think otherwise. Just one more step in the company's attempt to keep from reimbursing you.

It's all just part of the game, I've been through it many times before, and I know the poor person at the other end of phone is not out to get me, she just has a terrible job that she probably needs very badly, or she would have quit long ago.


INDIGNATION

Usually I pride myself on not losing it with this illness. Of course every now and then I do lose it-- I cry and scream and even throw things, but these occasions are rare, and getting rarer. Long ago I figured out that being angry about being sick is just a waste of energy. I'd rather enjoy all the things that are great in my life and deal with the myriad elements of sickness as best I can.

So why, two minutes into this phone call was I furious? I was shouting at this poor woman on the other end of the line, at a call center in Kansas, and I was close to tears. Tears of frustration, not just at the phone call, but for the ten years of my life lost to illness and the countless indignities I have to go through. Break out the violins!

Perhaps it was how nice and reasonable this woman sounded, like she really was a nice, nice person, the kind of person who would bring me raspberries from her garden if I lived nearby-- even while she was describing to me an entirely different set of rules and regulations that were nowhere to be found in my health care plan, and in this parallel universe where the prescription benefits administrators live none of the medicine that treats Lyme is covered, especially not the injectable kind, which of course is the kind I'm on like crazy and costs a fortune. She seemed puzzled that I didn't know about all these rules and regulations in her world, but ultimately she could do nothing. She couldn't even give me the address where I should send my appeal-- she told me to call a different number to find that. (Of course at the second number they told me to call the first again, but that's a different story.)


THE SYSTEM

In the whole discussion and debate about health care and the insurance industry, the thing that makes no sense to me is how people keep using the word "system" to describe the current state of health care in our country. I just would like to say, what system??? Perhaps Medicare and Medicaid have a system, but as for the rest of it, from what I can see and what I've experienced, there is no system. There is just a horse manure everywhere you go, with a few truly good people in the midst of it, such as Dr. Ross and Carolyn Humphreys, managing to help a few of their fellow humans.

When I hung up the phone I felt terrible for yelling at that poor woman. I'd already apologized to her several times before I hung up, having realized how badly I'd behaved. The worst part of it is I should be able to call up the executives running my insurance company and scream at them for an hour. I don't know if it would be productive, but at least my anger wouldn't be misdirected.

Instead I called my Congressman's office, and told the sweet woman who answered the phone that they should be sure they were working as hard as they could to make Meaningful Health Care Reform come true, because my insurance company was making me miserable. She asked my zip code so she could chalk up my call in the day's tally, and told me how sorry she was I was having a terrible time, and then we said goodbye.

I felt a little better.


DEMOCRACY AT WORK (THAT MEANS YOU!)

So here is my plea: Call your congressional representative.

If you are as miserable as I am with this or even if you aren't but you know me or you know someone else who goes through this stuff with the so-called system. Call and keep the pressure up so this legislature goes through.

It's not a big deal to call. They have people there whose job it is just to answer the phone when constituents call, and the best way to let them know you want change is by calling. Obama is the closest thing to a demi-god I have witnessed in my thirty-six years, but he can't do it all alone. We need to help.

Tuesday, July 14, 2009

ICE

I have a sneaking suspicion that I am the only person out there giving myself subcutaneous shots of heparin to treat Lyme disease. I know I'm in the minority when it comes to Rocephin by injection instead of IV. I'm writing this anyway, in case there is some kindred soul out there, trolling the internet for the one-long lost person who also shoots up these drugs.

I love my injections. Not the part with the needle going into my flesh, but I love what the medications do for me.

I loved heparin from my very first time, four years ago, when I felt a warm tingling washing away the ache in my legs and fell into a rich, deep sleep a half hour later. I don’t fall asleep right after my injection anymore, but it keeps my blood circulating, makes me wonderfully relaxed, and allows me to do good things, like walking, for instance. When I miss my injection my shoulders stiffen up, my hands and feet get chilly and I don’t sleep that well.

(Apparently besides thinning my too-thick blood, heparin also has a therapeutic effect on the Lyme itself. According to my MD, Dr. Martin Ross, (and I'm paraphrasing wildly here) there is a kind of protective sack around the really hard to treat Lyme, and Heparin helps break this force-field down so the antibiotics can more easily get at the spirochete and destroy it.)

Rocephin I wasn’t quite so sure about at the start, but on the third day I discovered that moving around-- not lying down as I’d been doing—right after the injection got rid of the pain and also the despair that had been taking over. Since then I think Rocephin is great. On Rocephin I’ve cut down from two naps a day to one. I feel more solid and more energetic. I am working better, walking better, feeling better. I don’t want to miss a single dose.

Both these injections cause bruising, each in their own special way. At first it’s negligible, but over time the bruises build up. The best thing is to get on them right away, before they get the upper hand.

I used to ice right before and right after I injected my heparin, until naturopath Amy Derksen told me it was better to ice at a different time, so my body would absorb the heparin more quickly after I’d shot it into my fat. I’ve taken the same approach with the Rocephin—walk around, get it circulating. Ice later if you remember.

That means on a good day, when I'm home and can remember to do it, I shove ice packs down my pants. Generally I do this in private, although the baggy shirts I've been wearing to protect myself from the sun allow me to walk around outside with a surreptitious ice pack on my hip. Sometimes all the crazy things I do to get over Lyme disease just dovetail in the most marvelous way!

Besides the ice there is also Arnica, the very famous homeopathic, available as a topical cream at any self-respecting co-op or health food store.

The Rocephin also creates swelling and tough, lumpy spots under my skin that are sore when I touch them, lie on my side or do certain yoga poses. Just a few days ago I discovered I can massage these away. To do this a lotion that is thicker than your garden-variety moisturizer is helpful, something that is mostly shea butter or cocoa butter, i.e. solid at room temperature. (Don’t use Vaseline—that stuff is made out of petroleum!) Once the shea butter is on there, press down gently but firmly and move your fingers around until you feel the nubbly texture in the swollen area. You can then use the same gentle pressure to massage these little lumps away. I do this before bed and wake up in the morning happily de-lumped and looking forward with delight to my next injection.

Sunday, July 12, 2009

IT'S WORTH IT



Last fall, The Poet and I took an overnight trip to nearby Vashon Island. We had scarcely travelled together before that, given how sick I’d been and how The Poet eats up his vacation on trips to Egypt. I don’t remember how I got the idea of the weekend away into my head—I must have decided it would be fun to see some of the beautiful spots outside Seattle I’d heard so much about. It was pretty last minute, so I spent a couple hours trolling the internet and calling around for an available room. I also spent an hour and a half packing my medicine, injection gear, clothes, some back-up wheat free food and my infra-red mat for sleeping. When we arrived at the bed and breakfast I spent another hour unpacking it all.

While we were away I still had to take my two naps per day, do injections, keep track of taking my myriad of pills (harder to do when they’re not in the usual spots around the apartment) and worry if I would be able to eat what food came my way or able to sleep on sheets washed in detergent I would most likely be allergic to. In the end that didn’t matter—I tried to sleep next to The Poet for about half an hour on the queen sized bed, but he has a tendency to kick anyone in proximity to him while he sleeps, so I ended up spreading my far-infra-red body matt on the floor and using my backpack as a pillow. I woke up feeling pretty stiff, then had to worry about doing my injection and drinking down medicinal liquids before I made it down to breakfast, then back upstairs to pack all my stuff up before the checkout time.

We spent the remainder of the day walking through the hilly grounds around the B&B, then exploring the island. The trip was so short that by the time I was home and resettled it seemed the ratio of planning, packing, napping and travel to leisure time was 3:1.

The Poet, on other hand was delighted with the excursion. He frolicked on a sandy beach and insisted on wearing his socks to wade through the chilly surf to a beckoning sand bar. Such a simple change of scene was magic for him; he returned to Seattle ebullient. I, on the other hand, felt worn out from the strain of it all. Couldn’t we be just as happy at home, with all Seattle had to offer and so much less hassle?


So I gave up on traveling. I decided the only trip really worth taking was home to my family, where I know what food I will be eating and what bed I will be sleeping in, and where can stay for three weeks without racking up a huge bill. Otherwise, I told myself, I could be perfectly happy at home. As Emily Dickinson wrote:

There is no Frigate like a Book
To take us Lands away
Nor any Coursers like a Page
Of prancing Poetry--
This Travers may the Poorest take
Without oppress of Toll--
How humble is the Chariot
That bears the Human soul


True that, until at last the Human soul feels it will Scream if has to look at the same white walls of the same tiny Apartment for yet another Day, no matter how good a Book said Human soul might be reading.

So it was that a few weeks ago I found myself casting around for anywhere we could go at the last minute for two nights. We ended up in Portland. Not surprisingly, given my travel record, I had never been there.

Yes, I spent forever packing, and unpacking, and even ended up missing taking some of my supplements at the right time. Expecting the floral scented sheets to be sickening (they were), I brought my own pillowcase and sheets to throw on top of the hotel linens. To my surprise, The Poet was moody on the first day, as he really wanted to go to a beach and didn’t find being in another city that exciting.

I myself had a glorious time. Yes, Portland isn’t all that different from Seattle, except there is no sales tax. There are also many fewer hills, so I could walk all I wanted without aggravating my tendonitis. But the best part was just to be somewhere different, with no dishes to wash or dinner to cook or garbage to take out.

By the second day The Poet had relaxed a bit, and we had several truly good meals, went to Powell’s books and did some unexpected things like stopping in the 3D Museum and riding a Ferris Wheel.

At age 16 I went to Costa Rica to learn Spanish, at 20 I boarded a plane for France and at 21 another to Buenos Aires. At 36 climbing aboard a ferris wheel in Oregon almost felt like more adventure than I could handle. I was worried that the ride would be too fast—I kid you not. This is how dull my life has become, but the upside was I could get a big thrill from riding a ferris wheel. We shrieked and laughed and marveled at the view.

I’m not sure if there ever was a trip in my whole life that I appreciated so much as the one to Portland. Before my diagnosis, before my treatment, I could not have dreamed of such a trip—three hours on the highway for starters, then lugging bags up and down stairs to the hotel room and walking around the city most of the day. But it was more than just another marker of how much stronger I am. The Poet and I both left Seattle crabby and burned out, and came home happy with ourselves and happy with each other, and it has lasted. With all due respect to Emily Dickinson, there is no frigate like the Honda Civic.

Friday, July 10, 2009

TWO YEARS ON ANTIBIOTICS

In early July 2007 I swallowed my first antibiotic pill to treat Lyme disease. At the time I had been sick with Lyme for at least seven years, probably longer, probably nine or more.

I spent most of those years lying in bed, gathering up tiny wisps of energy by means of elaborate breathing exercises, and pushing the wisps into a ball, so I could sit up for an hour a day and draw, then collapse back onto the nearest couch and start marshalling my breaths all over again. To pass the time I listened to NPR, and then every single book on tape I could get my hands on. Driving was too much, reading was too much, the noise inside a baseball stadium was too much. At times even walking to the kitchen was too much.

I stood on my feet only with trepidation, knowing that within seconds the dead feeling would be there, in my lower legs, and if I let it go on too long it would creep up my calves to my thighs and then the rest of my body, until there was nothing to do but cry from the pain of it and no way to get out of its stranglehold, not even with the most byzantine breathing or the most glorious meditation, no way besides waiting it out for the next few miserable days, in bed and aching, until brief moments of relief would come and go and coalesce into the bliss of just feeling OK, and I had one more chance to stay inside the lines, repentant now for whatever it was I’d tried to do—make a cake or walk over to the neighbors—and I would start gathering my energy again, keeping my sights low, thankful for my hour when I could just sit up and draw or sew.

And now here I am, after two years on antibiotics. I can walk anywhere I like, go the gym, spend the whole morning shopping and teach David to play baseball in the afternoon. I can read for hours and go to a ballgame. I cook dinner and grocery shop and clean the house, and at times I even remember to be grateful that I can do these last three.

When I first saw Dr. Ross and he told me I had Lyme disease, he said the antibiotic treatment would last two to three years. It seems at this point it will be three. Despite all the many things I can do after two years, there are quite a few that are still not possible. The main one is just get through an entire day without downtime and a nap. The other is count on a good night’s sleep. One huge change since I started the antibiotic Rocephin six weeks ago is I can function quite well on just seven or even six hours of sleep, so the insomnia is not the source of misery it once was.

Because of the Lyme-related tendonitis that flared up six months ago, there is a whole range of physical activity that is off limits to me, the ones I particularly love, like dancing and jumping on the mini-trampoline and walking up hills fast. But all in good time, I tell myself, I will be able to do anything I want.

There is one last thing that has not unfolded quite as I had hoped. As I started the antibiotics I knew it would be tough. I was right: there are myriad prescriptions to keep track of, and herbal drops to take and special drinks mixed up and a battery of supplements to organize. On top of that I find I need to go to the sauna every few days and take long walks and do yoga daily so my lymph drains. I have physical therapy and myofascial release therapy for the tendonitis and then the regular doctor's appointments.

None of these things is that bad, in fact some of them bring me a kind of mind-numbing enjoyment. None of them is optional either, and added all together they come out practically to infinity and there is scarcely an hour in the day when I can read, or write, and drawing is a thing of the past.

This is not what I had anticipated, not at least for year three. I had somehow told myself that as Lyme loosed its grip on my physical self, I would be able to write. At this point in the timeline I envisioned myself writing perhaps two to three hours a day, if not more. In fact, I saw it as a sort of heavenly time when although I didn’t have the stamina to go out and hold down a job, I would be happily at home, typing and thinking and taking blissful naps.

What I didn’t reckon on was that being able to write and having time to write are two entirely different things. Lyme may not be running my body anymore, but it is still running my life.

It’s a pretty weak complaint: not that my fantasy of recovering from Lyme didn’t come true, but that my fantasy of what it would be like while I was recovering from Lyme didn’t come true.

As for the first fantasy, I am far from giving up on that.


THE POET

A special shout out goes to The Poet on this post. He and my mom have both been there for me when I needed them the most, my heroic mother during those years spent in bed. But these last two years it has been The Poet who has lived with me, who agreed I should move to his apartment before I started the antibiotics, who didn’t have to sign up when he went on that first date with me, who could have backed out any time, like when the Plaquenil made me hysterical or when I asked him for one more ride to the doctor, or for someone to give me an injection in the butt every day, he could have said 'enough.' Instead has stayed right where he is, has never flinched.

Thursday, July 2, 2009

BACK TO MYSELF AGAIN

Phew. Yesterday was insane. After writing the last post I drank down some Vitamin C in hopes of cleaning out my system. Made myself more nauseated instead. I got dressed and got in the car for a previously scheduled doctor's appointment. I felt worse and worse as I drove, and was quite sure I shouldn't be on the road. My teeth were chattering from the nausea and pain as I pulled up to the office-- so much for assuming I'd be better soon.

I actually didn't know nausea could be that excrutiating. In the past nausea has just been nausea, if it got worse it was only until you threw up. But in this case I wasn't nauseous because of anything in my stomach, so it just ricocheted around my body until I felt every second like I was about to explode. That lasted around an hour.

Dr. Ross suggested extra magnesium to get calm down the muscle spasm in my head, and agreed that it was probably related to die-off and an extra-long session of myo-fascial release that had increased the circulation to my head. He suggested a glutathione IV if the nausea didn't improve.

I had texted The Poet on my way into the appointment, and when I walked out he was already in the waiting room, ready to drive me home. Hooray for The Poet, my hero! He is keeping the streets of Seattle safe from half-blind, nauseated drivers.

At home I forced myself to swallow down chlorella and magnesium glycinate, then figured out that if I lay on the couch without moving a muscle the nausea disappeared. I fell asleep.

When I woke up I called Jeanette, who does a relaxation/nervous system therapy called SRT. We did a session over the phone, and at the end of the hour the nauseau was about 25% of what it had been, much to my relief. I was well enough to get David from camp and drive us both home. Normally we don't watch much TV, but yesterday we saw the whole baseball game and the second half of Star Wars Episode IV and everyone went to bed early. I woke up feeling much, much better.

P.S. Had an appointment with Amy Derksen today. She thought the episode was set off by the visiting doctor who increased one of my supplements (P5P) a couple weeks ago. This caused me to detox heavy metals a little too quickly. The chlorella and the magnesium were the right things to take, and I have dropped the P5P for the time being.