Theories of infection

How and when and where I was infected with Lyme and the co-infections doesn't really matter. It won't change the treatment plan. But I'm curious. And I have theories. Which, because I can't sleep, I am going to share with you.

What we know: Lyme (caused by the Borrelia burgdorferi bacteria) and the common co-infections are transmitted by the bite of an infected tick. Some speculate that other vectors (fleas, mosquitoes) may be able to transmit as well, but we don't know. After initial infection, the bacteria can go dormant and just chill out, not bothering you, until your immune system is compromised or some other event allows them to flourish and multiply and make you sick.

Assumption 1: I know my current phase of illness began on Thanksgiving Day, 2007. I'd just moved into the new house and had been stressing and running myself ragged and all other sorts of things that are bad for me. I was not taking care of myself. My immune system was compromised.

Then on T-day I developed a sore throat. It may have been strep throat. Maybe it was mono. Whatever it was, it was the opening for Lyme and co-infections to get all excited and throw a frat party in my body. There's also potential involvement with other viral and bacterial infections, but I'm setting those aside for now.

So I'm thinking that I was infected at some past date, and the infection was activated (or reactivated) in November 2007. Which brings up the question--when was I bitten/infected?

A note on ticks: Many people who are infected with Lyme do not remember a tick bite. Deer ticks are very, very small and can bite, suck your blood, and detach without you ever knowing. That said, I've been bitten by so many ticks that one more bite would not register in my memory.

I grew up tromping through fields and farmland and it was common to come with at least one tick attached. It wasn't a big deal. I thought of them the same way I thought of chigger or mosquito bites. Annoying, but nothing that you remember.

So I know I've been bitten by ticks. I don't know if I was bitten in one of the more heavily Lyme-endemic areas (New England, Northern California).

Theory 1: I was infected while living in Oklahoma. Lyme is less common there, but is still present. And I certainly had the opportunity to be bitten. (Timeline: I left Oklahoma to attend school in Massachusetts when I was 17, in 1996.)

Theory 2: I was infected in Massachusetts (timeline: summer 1995 and school years 1996 - 2000). After leaving college, we lived in Tucson, and it is much less likely I was infected there. We did most of our outdoor adventuring in the desert, which is less friendly to ticks.

Theory 3: Northern California. We lived in the Bay area for about 20 months in 2005 - 2007. I spent much of my time leafleting on college campuses, many of which were in or near the suburban wooded areas so beloved by deer ticks. We also spent time hiking in the coastal ranges. During this time, I had several mysterious bites that I attributed to spiders. I also briefly developed what I know recognize as a classic bartonella rash.

Theory 4: Vacation in Oregon, Labor Day 2007. We divided our time between beach walking and hiking in the woods nearby.

Thoughts: It's entirely possible that I was infected multiple times. Or I was infected with Bb (Lyme bacteria) at one point and with bartonella at another point. So I shouldn't assume that everything happened at once. Not that it matters now. But we're speculating, right?

My preferred theory: I think I was likely infected in Massachusetts.

I base this on a few incidents pre-full-blown-Lyme. The fall/winter of 2002 - 2003, I was sick all the time. The symptoms I complained of then were very similar to what I have now. Leading up to this time was a great deal of stress (two companion animals dying, my job was really putting pressure on me, social/friend explosions), and I was very vulnerable to illness.

Also, I remember thinking that perhaps I was clinically depressed because my brain felt like it was made of fog. I couldn't think clearly...everything was slow, like wading through quicksand. I suppose it would be properly termed "depersonalization." In retrospect, this clearly reassembles my worst experiences of "Lyme fog."

Finally, during this time, I mildly sprained my ankle. While the injury healed quickly, I had intense, off-and-on joint pain for months afterward.

I think that after months of illness, my immune system was able to re-boot and fight back the bacteria into a dormant stage...mostly. A few symptoms remained, but they could be explained away on their own.

And so the bacteria waited, patiently, hanging out in tissue, until the environment (my body) was suitable for another attack. A massive, take-no-prisoners attack. As such, I've had to call in my allies to fight back. My immune system has been occupied, and I'm rallying the resistance fighters to my side, along with help from Western medicine, CAM, and energy work.

I think I'll win.

Happy birthday to my wonderful husband!

Today is my husband's birthday! To celebrate, we're having a party on Friday night. If you're reading this and you will be in Seattle, you're invited. We'll have cupcakes, booze (but none for me, due to my meds), non-alcoholic drinks, snacks, board games, and all sorts of crazy fun.

I surprised Nick with his present last week. I hadn't meant to, but when I got his present home, I realized that there was absolutely no way I could hide it. See, I got him an HDTV. A 42" HDTV. He's been wanting to upgrade to an HDTV for ages, but it's not something he'd ever get for himself. Particularly since so much of our income is currently devoted to fighting my illness.

Well, I'm a bit of a sneak, and I've been squirreling money away for a while now. And since the economy is in the tank, you can get really good deals on HDTVs. (I was able to get $400 off the standard price.) And, frankly, Nick deserves something good. He works all day, then has to come home and take care of all of the things I used to be able to do (cooking, laundry, blah blah blah). He's got so little free time to enjoy himself, and I'm pretty boring since I usually don't feel good enough to go out and be social. And I figure if all we do together is sit around at home and watch DVDs, well, at least we can do it on a really cool TV.

Anyway, so I get this huge box home and realize that there's NO WAY I can hide this thing. (I had to get my neighbor to help me carry it in from the car.) So I wrapped it (the best I could, since it took two rolls of wrapping paper) and left it sitting in the middle of the floor. Needless to say, Nick was very surprised and very happy. He's been playing with his new toy since.

It makes me do a little happy dance.

More from the wacky world of health insurance

My insurance company denied my doctor's request to have Levaquin approved for more than 10 days at a time. (Back story: When I called the insurance company, they said it would be a simple matter of getting the doctor to state that I'd be on the drug for more than 10 days, and then they would grant approval, no problem! Without approval for 30 days' worth of the drug at a time, I have to pay the $35 co-pay every 10 days.)

The reasoning behind the denial is that Levaquin is not approved for long-term treatment of chronic Lyme disease. OK, well, we might resolve this since I'm actually taking the Levaquin for one of my co-infections, bartonella. So maybe it'll get approved. Until then, I'm paying every ten days.

But that's not all the insurance company said in their letter. The letter goes on to state:

The FDA has not approved long-term antibiotics for the treatment of Lyme disease. [We] will consider coverage for this medication in the event that such use has been recognized by one of the following:
* The American Medical Association Drug Evaluations;
* The American Hospital Formulary Drug Service Information;
* The U.S. Pharmacopoeia Dispensing blah blah blah; or
* Two articles from major peer reviewed medical journals that present data supporting the proposed off-label use(s) as generally safe and effective for you condition. These articles are only acceptable if there is no clear and convincing evidence presented to the contrary in any other major peer reviewed medical journal.

This letter scared me but good. Not because of the Levaquin. That might get ironed out, it might not, but even if I have to pay $35 every ten days, it's not the end of the world.

What scares me is this sentence: The FDA has not approved long-term antibiotics for the treatment of Lyme disease.

All of my medications up until now (except the Bicillin, more later on that) haven't really been a problem. The Levaquin thing is irritating, but whatever. My many, many other rounds of antibiotics have been covered. Which is good, because antibiotics are freaking expensive.

I'm worried that this might put up a red flag at the insurance company. I've heard plenty of Lyme horror stories (some involving the eventual death of the patient), and I'm afraid that the insurance company will stop covering all of my antibiotics. (As a side note, Cure Unknown
is a fabulous and entertaining book that explains the political shenanigans that have led to this problem in the treatment of Lyme.)

Nick, as always, is the voice of reason in our house. He told me not to worry (yet) because this might just be a one-off problem and they won't connect the dots and decide to deny all of my medications. And if they tried to do that, we could raise a stink and fight the decision. Sigh.

On to my other problem medication, Bicillin. As I mentioned in my previous post, my insurance company believes that the drug should only be administered in-office, which is ridiculous, and my doctor's office is working to get them to change their policy. Until then, if I want my Bicillin, I have to pay out of pocket.

Nick and I have been talking about this, and I think we're going to pay for the first month of the drug now. I don't know how long the insurance negotiations will take (or even if they will resolve in my favor), and I want to start this next phase of treatment as soon as possible.

Nick and I called a few pharmacies today to figure out who has the best price on the drug. Costco looks like the winner, and I think you can get prescriptions filled without having a Costco membership. Target might actually beat Costco on price, depending on how the drug is packaged. You can get the pre-filled syringes, or you can buy syringes and a bottle of the drug and fill the syringes yourself as you go. At least that's what was said on the phone today. I've found that what a company tells you on the phone is often wildly different than what you hear when you're there in person, so who knows how this will play out.

The weariness, the fever, and the fret

I feel as though I should write an update. My brain functions today, no small feat. My body, however...I feel it is failing. Bit by bit.

Tomorrow might be different. Some days I've got a mind that's weak and a back that's strong, while today I can think clearly(-ish) but can barely move from the bed. And then there's the spectacular combination of broken body and mind.

Ugh. I'm being dramatic. I should stop reading Keats. (Points to those who caught the reference in the title of my post.)

Anyway. I hear we have a new president. And that is a very good thing.

What else?

My insurance difficulties continue. The insurance company doesn't want to authorize more than ten days of Levaquin at a time. So every ten days I have to go down to the pharmacy and pay another $35 co-pay. We're working on the extended use authorization. Still.

And still the company refuses to accept that intramuscular injections of Bicillin can be administered at home. They classify the drug as an in-office procedure/injectable, and want me to go into the doctor for each shot. Which is, of course, ridiculous. They pay about $110 each time I see Dr. R (and I pay the remaining $90 or so). So they'd be paying at least $330/week plus the cost of the drug if I were to be injected in-office.

If I inject myself, a one month's supply of the drug is some like $650--of which I have to pay 30%. So clearly it is in everyone's best interest to have me inject at home. So my doctor is going to have to try to convince them of this, and hopefully I'll be approved to get my IM Bicillin sometime within the next century.

On an unrelated and positive note, I haven't had any further "spells" (possible seizures) since the forgetting-how-to-speak-English event. Except when I dream. Now I'm having seizures in my dreams. I've also started treating myself with Reiki in my dreams, so maybe it all evens out in the end.

My dreams are exceptionally vivid--they have been for years--to the extent that I'll do something in a dream and honestly believe I've done it in real life. Then I catch myself and realize, "No, wait, I've never done that." Anyway, it makes for interesting dream seizures.

Did I mention the new president? Because that makes me happy.

An Expert in Cat Pee

There are many things in which one might want to claim expertise. Mountain climbing, perhaps, or kung fu. Cat pee, I suspect, is on no one's list.

But I have, unfortunately, become an expert in dealing with unwanted cat urination. Yes, I claim expertise. From medical issues (cat urinary infections) to cat urine battle (Juno vs. Percy), I've been through just about everything. Lucky me.

So, gentle and caring soul that I am, I have decided to share this wealth of knowledge with you, dear reader.

I present: Anna's Exhaustive Guide to Dealing with Cat Urine.

No Bicillin yet

ARGH! Stupid insuance company. Stupid pharmacy.

I've been trying to get my injectable Bicillin for about two weeks, and I keep getting punted from one party to another. (From insurance to one specialty pharmacy, to insurance, to a different specialty pharmacy, back to insurance.)

Now my insurance company is saying that IM Bicillin is not a "prescription" drug because it is always administered in a physician's office. My LLMD warned me that this might happen, and he'll need to talk to their medical director to explain that it really is cheaper for them to give me the drugs and inject at home, rather than pay for a office visit three times a week.

So, yeah, I'll probably get my prescription...eventually. But when? So frustrating!!!

Performance Art

A couple of nights after my last scary neurological experience, I was talking to Nick. And then the words stopped. I couldn't find my words. Now, with the progression of my disease, I've had other word-finding problems, but they have normally been isolated, like forgetting the word for "blender."

But this time, I lost almost all of my words. In a totally academic meta move, I forgot the word for "word." I could see each letter spelled out in my head. W. O. R. D. But I couldn't string the letters together to form the word "word."

And then I realized that I could still speak in French.

"Les mots!!!" I exclaimed. (Words!) And I proceeded to rattle off in broken French.

Nick, I should note, does not speak French. He knows about five words and one complete sentence, the translation of which is "I have a very fierce ferret, so you'd better do what I tell you to."

At the time, this was a teensy bit scary, but also absolutely hilarious. I mean, forgetting the word for "word"? It's too perfect. I'm sure some gloomy, cigarette-smoking European theorist is soiling his pants with excitement as I type this.

Little by little, I got my words back. Nick said, "You know, I'd tell you to rest and get to bed, but I can tell you're having a good time with this."

And, oh, it was true. It was just really interesting to the peanut gallery in the back of my brain to watch the rest of my brain try to make my mouth cooperate with what it wanted.

"My disease," I said, "and my life...it's all just performance art! And you are my captive audience."

In Neurological Terror...

I just forgot how to climb stairs.

Seriously.

I put one foot on the bottom step. And I didn't know what to do next. I was certain that if I moved my other foot, I'd fall. It seemed impossible that I'd just come down this flight of stairs, and that I had previously moved with (comparative) ease up and down the two flights of stairs in my house.

I could feel panic building. Because this was SO NOT COOL.

Logically, I knew that I knew how to do this. I knew that physically I was still capable of climbing stairs. The muscle memory was there, even if my brain refused to acknowledge that.

So I closed my eyes. And I ran, saying over and over, "Don't look don't think don't look don't think." Because if I stopped, I wouldn't make it all the way up.

Now I'm on the top floor of the house. I hope I can get back down later.

Part of me thinks this is hilarious. I mean, really, it's kind of funny, right? Stairs. Dude. They're stairs. Not rocket surgery. So it's funny.

And the rest of me is absolutely terrified.

I'm home alone and I'm really really scared right now.

Update @ 6:44PM: Nick came home shortly after I wrote the above post. I was applying self-Reiki, and he added some more healing energy into the mix. After a few minutes, he helped me down the stairs and I got some food into me. And more Reiki. Later I made it back up the stairs, largely unassisted.

I'm thinking it's probably a combo of the new meds and resulting die-off reaction, plus the exhaustion of the last two days.

Goes up. Goes down. Round and round we go.

Snacking

One of the drugs I'm taking requires NO EATING for two hours before/after taking it. So I usually take it in the morning between an early breakfast and late lunch, and then at bedtime.

This means no more bedtime snacks.

Which makes me cranky. I want my bedtime corn flakes!!!

Medical Update

Today I saw Dr. R. I've made little progress against this illness so far, and we discussed where to go from here. In treating chronic Lyme, there's a lot of variation in how aggressive you want to be. The more aggressive you are, the more likely you are to have severe die-off reactions and therefore feel miserable. But you're moving faster. Short-term pain for (hopeful) long-term gain.

It surely comes as no surprise to anyone who knows me that I want to be as aggressive as possible, within the limits of safety and our financial resources. With that in mind, we are moving from oral antibiotics for Bb (the Lyme bacteria) to intramuscular injections of bicillin. (Next step, if this doesn't work, is a PICC line for IV antibiotics. Much more expensive, and higher risk. And insurance companies often don't want to pay.)

We are also switching over to Levaquin for bartonella, and adding Flagyl to disrupt the cyst form of Bb. We are discontinuing the azithromyacin, bactrim, and ceftin. And we are adding a supplement called Lumbrokinase to treat possible biofilms and hypercoagulability, along with glutathione precursors to help with liver support/detox.

The breakdown of all of this is that Nick is going to be giving me shots in my butt three times a week. And then my butt will hurt for two days. At which point I get my next shot. I am going to be totally butthurt. At least I'm not afraid of needles.

The schedule for all of this is as follows:

Today: Stop azithromyacin and bactrim. Start Flagyl and new supplements.
One week out: Have first bicillin injection. Stop Ceftin.
Three weeks out: Begin Levaquin.

We're spacing out the changes so we can monitor my response to each.

So the updated med list is: Bicillin injections, Flagyl, Levaquin, sertraline, nystatin, levothyroxine, clonazapam, vicodin (as needed for pain), Astelin allergy nasal spray, birth control pills, multi-vitamins, amino acid supplement, B12, omega-3s, vitamin C, vitamin D, acetyl-l-carnitine, ashwagandha, Fibroboost, quercetin, Lumbrokinase, glutathione precursors, d-ribose, and probiotics.

What goes up...

Every time I start to get optimistic and write something like "I think I'm finally making some headway against the neurological symptoms of this disease" or "Neurontin (generic name: gabapentin) has so far been a big hit," reality steps in and hits me in the face with a frying pan. And instead of little stars and twittering birds dancing around my head like in a cartoon, I get laughing spirochetes. They mock me. Jerks.

The last couple of months seem to have followed the same pattern. I'll feel like crap, suffer through a die-off reaction, then slowly start to feel a teensy bit better. Then I'll have four or five days where I begin to think "Gee, maybe I'm getting better!"

At first I'm nervous because I don't want to over-extend myself (a major flaw of mine), so I'm really cautious. Then after three days, maybe four, I think it's going to stick, so I make plans about what I'm going to do. I'll start a project. I'll get excited.

And then--BOOM--just when I think things are looking up, I come crashing back down.

I was feeling (relatively speaking) pretty good from December 20 - 25. I signed up for classes at the Tai Chi and Qi Gong studio nearby. I almost finished reading a book. I went on a long walk through the snow. I had coherent conversations!

And then I declined. On Monday (December 29), things started to get pretty rough. By today, I just couldn't get out of bed. I tried. Failed. I eventually rolled out onto the floor and crawled my way over to a chair that I used to pull myself up to standing.

I'm taking a sick day.

It's been difficult emotionally. The brain fog has returned, along with the word-finding difficulty. Yesterday I found myself standing in the aisle at Whole Foods, cart full of groceries, wondering what I was doing. What was I supposed to do next? I had a piece of paper with all of the items crossed off. So what now? What do I do?

I guess "What now?" is the ever-present question in chronic illness. All of my excitement and my plans have been put on hold...again. From yoga to reading to cleaning up my snow-and-ice-damaged garden, it's all on hold. Indefinitely.

I am not good with the indefinite. I like time lines and lists and organization and plans and expectations. Without these things I feel lost. Honestly, it terrifies me. My entire life has been a quest to find order in chaos, to establish that I have power and control in my own existence.

At the heart of my Lyme struggle--physically, mentally, emotionally, spiritually--is a search for balance. To find peace between order and chaos. Perhaps wellness lies between illness and health. Perhaps wellness is balance.

Addendum: I just read over my post and something hit me. What are my plans for this evening? Why, I'm attending an anyi despacho ceremony, lead by Rose De Dan, the woman I see for shamanic healing. And what is an anyi despacho ceremony? Rose writes:

A despacho is an ancient ceremony that melds the assembling of consensual reality (the world we all agree exists here and now) with offerings and prayers to the Spirit World for the creation of ayni (balance and harmony) in our lives, healing and release of energies that are standing in our way of fully stepping into who we are becoming--our limitless possibilities.

Hmmm...fitting, no?

Under Our Skin

If/when this film is screened in your area, please go see it. Please.

Currently Reading

I've recently started reading Cure Unknown: Inside the Lyme Epidemic. I highly recommend it to anyone curious about Lyme disease--what it is, why it's so controversial, and how it can affect patients (and the doctors willing to treat them). Also, it's just a darn good read for anyone who enjoys science writing or investigative journalism.

It explores how hubris and "experimenter bias and expectation" can have a profound impact on how the scientific/medical community can view, understand, and treat a disease. Even for someone completely untouched by Lyme disease, it's a keen insight into common human failings.

As a companion read, I recommend How Doctors Think by Jerome Groopman, a physician and occasional writer for The New Yorker. It's a great tool for patients, and--again--a fascinating read. Even with my limited cognitive abilities (thanks, Lyme disease!), I plowed through the book in just a few days. I love non-fiction page-turners.

Luckily, I think I'm finally making some headway against the neurological symptoms of this disease. My cognitive abilities are not as hampered as they once were. Last night I was able to read over 100 pages of a book! While this was completely commonplace before I got sick, in the last year it's been nearly impossible to read for even thirty minutes at a time. Not only was it simply difficult to understand the words on the page, the act of reading itself was painful. The effort of processing what I was reading was just too much. But now I think I am getting a little better. I hope.

I still have difficulty finding the right words sometimes. I will forget the names of common objects. For example, last night I told Nick that he could put the dirty laundry in "um, the thing that, um, makes stuff clean." Luckily, he's used to this by now, and just put the laundry into the washing machine.

And my grammar and spelling are not perfect. Writing is still hard. I have to go back and correct simple misspellings--mixing up "here" and "hear," for example. And I find myself using the wrong verb tense, especially while speaking. But not as often as I used to. Progress!

Solstice Celebration

Today is the winter solstice. After months of growing darkness, we will once again move towards longer days and more sun. Living so far north, the effects are particularly pronounced. The sun is rising around eight and setting shortly after four, and it will be a wonderful change to see the light gathering again.

Ofelia Zepeda, a poet from the Tohono O'odham tribe, describes a melding of body and earth/time in her poem "The South Corner." She opens: "My body is in line,” then continues, “It is at its darkest point, but only for a short time.” As the long night reaches its end, "the light becomes stronger." The speaker explains:

And so I begin another cycle
along with the animals, the plants, the oceans, and winds
and all that feel this same pull.
I come into balance.
I begin again.

I, too, feel a sense of renewal at the solstice. As such, I feel this is the most appropriate time to adopt my new name. Tonight (despite the eight inches of snow!) I plan to have a private name ceremony in which I will formally accept my name. The legal paperwork will come later, but the real change will happen tonight. I have explained my reasons here.

Have a wonderful solstice, and may the new year bring you all that you need.

Profound Change

I've quoted from Coyote Healing before. I do so again:

The Native American perspective is simple: When you are sick you are in the wrong place at the wrong time, and you have been heading in this direction for too long. Therefore you need to turn around; you need a new direction.

Later, Lewis Mehl-Madrona mentions that an aspect of true healing is profound change. If you've been going in the wrong direction, you need a new direction. This is a powerful force for change. I've experienced this on a fundamental level over the last year. My old way of viewing the world (very Western) has been challenged, massaged, and transformed. I see things in a different way...it's very difficult to explain. My shamanic healing process, which I now see as an essential counterpart to my Western medical treatment, has taken me on journeys. I've met spirit guides, and I've caught a glimpse of the timeless expanse stretching backwards and forwards, which both exists and does not exist--a part of our "consensual reality," which is only one world of many (one of three in the Q'ero tradition).

All of this has changed me, softened the hard edges and transformed rigidity into something more fluid. I am embracing "profound change."

Profound change means that you must become a different person in some fundamental, recognizable, important way. The extreme version of this is the Cherokee practice of giving the desperate patient a new name, which means a new identity, since name is identity. [...] Treatment fails without a profound change. Hope also thrives in such changes. We must become a different person to family, friends, coworkers, and the self. In some palpable way, we must be reborn before we can heal.

I read this a few months ago, and it was like a puzzle piece finally coming into place. I wasn't sure exactly how to proceed, but I knew this would be important.

Recently, on a journey with my power animal, I found my name. I was also given a name-that-is-not-a-name, something very private and special and powerful--but that is not to be shared so publicly. My new public name, however, will become my legal name soon. (I don't look forward to all the paperwork!)

Snow Day!

Making Lyme-ade

Take lemons and make lemonade, right? Well, I'm taking Lyme and making Lyme-ade.

OK, I know that was really funny, so you can take a moment to catch your breath. Ready? No? OK, another minute... Now you're OK? Good.

Anyway. Recently I heard that one of my friends believed that I was unhappy. I was flabbergasted. Unhappy? Me? Really?

Which made me realize...I am happy. Seriously.

Are there things in my life I'd like to be different? Of course! I'd love to wake up tomorrow and spend the day sea kayaking in the islands instead of sluggishly plodding around the house. I wish I could spend my money on manicures instead of medications.

But there's always something you want to change, isn't there? The key is to find joy in what is, while working your way towards what you want.

This is not to say that I'm a little ray of sunshine. There are times when I get upset. I whine and fuss and curse my disease and my medications and my predicament. As I've often said, I think I'm having a reasonable reaction to an unreasonable situation.

Still, if I look at my life as a whole, I spend more time laughing than cursing. And I'm working towards wellness. Will I be happier when I'm well? I don't know. I'll be more comfortable. But happier? Hard to say. I think I'm pretty happy right now.

All I Want for Christmas

One of the most challenging aspects of being sick has been that I can't do all--or even a fraction--of the things I used to do. Some things I miss are small, like burlesque dance classes or trying new cookie recipes. Other things are much larger, and the one thing I most want to do again is leaflet for Vegan Outreach.

I'm an activist. But the key component there is "active." And I just can't be active the way I want to be. Back in 2003, when I realized that my calling was animal rights activism, I had this light bulb moment--this is what I'm supposed to do during my time on this planet. It was a moment of absolute clarity of purpose.

When I started volunteering for Vegan Outreach, I found what I believe to be the single most effective way to channel my activist energy. I leafleted schools in Arizona, and when we moved to California, I jumped in with both feet. I leafleted across the Bay Area, and I'd go on road trips to Southern California to leaflet schools in San Diego and Orange County. All told, I've handed out over 54,000 Vegan Outreach booklets on college campuses.

In the past year, I've handed out zero booklets. I've simply been too sick get out into the field. Which is where I know I belong. But I can't do it right now.

Which is where you come in. Yes, you, dear reader! Because Vegan Outreach doesn't run on energy alone. We've got the most amazing staff and group of volunteers, and our outreach efforts have been massively successful. In the fall semester of 2008, we reached over 130,000 more students than we did in the spring semester. And while we couldn't do this without the energy of our members, we also couldn't do it without financial support.

As you know, I'm on the VO board of directors, and I get the financial reports. I can tell you that we don't waste money. Our paid staff members take exceedingly modest salaries, so that the money donated can be used for our stated purpose: to decrease suffering.

Every Christmas Nick and I ask for donations to Vegan Outreach, so this request is not going to come as a surprise. However, this year I'd like to ask you VERY LOUDLY. Because I've been sick, I haven't been able to contribute my physical energy to Vegan Outreach. I honestly cannot express how frustrating (and depressing) this has been. So if I could have one magic wish this Christmas, it would be to regain my full health so that I could jump back into leafleting and making this world a better place, one little piece at a time. But I'm not going to be well by Christmas. I've got months, if not years, ahead of me.

So I'm asking that, rather than purchasing a gift for me, you make a donation to Vegan Outreach in my honor. Vegan Outreach runs on energy and generosity. You can't give me energy, but you can direct your generosity. Any money you would spend on a gift for me, no matter how small, I would prefer be given to Vegan Outreach. Nothing could touch me more, especially this year.

You can donate securely online at VeganOutreach.org. We currently have a matching donation challenge, so your donation will be doubled--so remember to mark your donation for the matching challenge in the "comments" section of the donation form!

So far, so good

Neurontin (generic name: gabapentin) has so far been a big hit. I've had two nights of good sleep! Amazing! And I'm not terribly sedated in the morning!

There haven't been any negative side effects thus far, and I'm hoping that it stays that way. Because getting sleep is very nice.

Last night I went to bed around ten and got up this morning around eight. And then we went out for breakfast at the Wayward and I ate my way through an awesome plate of scrambled tofu, hashbrowns, tempeh bacon, toast. And there was coffee. And it was good.

Better living through chemistry

Recently I've complained that I've been unable to sleep. Well, I can fall asleep just fine, but then a few hours later I wake up and can't get back to sleep. Taking more clonazapam helps me sleep through the night, but leaves me feeling sedated and hungover the next morning. Obviously, this is not ideal. It's already difficult enough to get out of bed and function without the drug fuzzies clinging to me.

So today I discussed this issue with my doctor, who after considering my sleep difficulties and the neuropathic-type "pain," prescribed Neurontin (generic name: gabapentin). Hopefully the change in medication will help me sleep as well as treat the weird hot/cold/pain sensations.

I know that "hot/cold/pain" isn't a great description. But pain is one of those funny things that is nearly impossible to describe unless the person you're speaking to has experienced a similar type of pain. We can categorize pain as stabbing, throbbing, sharp, dull, etc., but only because we generally agree on what those words mean. We've all had dull pain, sharp pain, etc. However, the hot/cold/pain isn't something that I think most people have experienced.

I was talking today with my mom who has neuropathic pain (amongst other conditions), and she knew exactly what I was talking about when I was describing the pain. How it's like it's inside your bones, that the very marrow is affected.

Anyway, I found the discussion very interesting. How do you describe a particular kind of pain to someone who hasn't felt it? For example, assume I've never had a throbbing pain--and then explain to me what it feels like. Difficult, no? It's like trying to explain to someone who has never itched, what itching feels like.

However, I don't think that you, dear reader, need to precisely understand the quality of sensation. I'm just rambling about language and expression...it's just interesting to me. And we shall see what the Neurontin does for me.

What kind of person do I want to be?

In which I present an essay by Matt Ball of Vegan Outreach. His title is "Is Being a Vegetarian Important?" The title I give it is "What kind of person do I want to be?"

As an activist, it's been very difficult being sick--which has meant not being active. And what is an inactive activist? I'll write more about illness and identity later. For now, I give you Matt Ball.

Is Being a Vegetarian Important?

Have you ever been in so much pain that you thought you were going to die?

Have you ever suffered so much that you wanted to die?

Every year, hundreds of millions of individuals in the U.S. do suffer to death. Slowly. Excruciatingly.

Egg-laying hens packed in tiny wire cages, unable to move because of how crowded they are, can have their wings or necks stuck in the wires, keeping them from getting to food or water.

Pigs, transported hundreds and hundreds of miles in all weather in open trucks without food or water – can freeze to death.

Chickens raised for meat, bred to grow so large so fast that their legs break under their own weight, leaving them incapacitated and unable to get food.

Vegan Outreach leafleter Wayne Hsiung described watching a downed dairy cow’s last few moments:

An hour before I was planning to leaflet, a friend of mine called and said that he had spotted a stalled transport truck with a downed dairy cow inside.

I arrived to witness a grisly scene. The poor girl was collapsed on the ground inside the truck, in a 3-inch-deep cesspool of feces and urine. You could see her wide, terrified eyes staring into nothingness, her entire body quivering ever so slightly. But she was making no sounds. The other cows had trampled her broken body; she had bloody wounds and bright red lesions that were clearly visible through the filth. Her udder was swollen to many times its normal size. We noticed a ghastly sliver of flesh on a gate mechanism above her. (It was later suggested to us that this might have been her tongue. Cows tend to lick the sides of the truck in search of moisture, but when it's a frozen mechanized gate, that desperate attempt can have tragic consequences.)

Our poor friend died that day, on the filthy floor of a bloody transport truck. We witnessed her body go cold, and her eyes stop moving. Her entire life had been enslaved and twisted by violence and prejudice.

Words cannot convey the horrifying conditions that bring about these slow, agonizing deaths – how the animals are bred, how they “live” on factory farms, and, for those who survive the brutal system, how they are butchered in industrial slaughterhouses. No verbal or even video description can begin to capture it; even visiting these confinement warehouses and slaughterhouses can’t begin to convey what it is like to live one’s entire life there, to be callously killed in the end.

It is enough to know that modern agribusiness is so inherently brutal that it will kill off, pre-slaughterhouse, hundreds of millions of animals through slow, agonizing means, simply as a cost of doing business. This is a system of cruelty so vast, so intense, that it really is beyond comprehension. As Michael Pollan wrote in the New York Times:

More than any other institution, the American industrial animal farm offers a nightmarish glimpse of what capitalism can look like in the absence of moral or regulatory constraint. Here in these places life itself is redefined—as protein production—and with it suffering. That venerable word becomes “stress,” an economic problem in search of a cost-effective solution, like tail-docking or beak-clipping.... Our own worst nightmare such a place may well be; it is also real life for the billions of animals unlucky enough to have been born beneath these grim steel roofs, into the brief, pitiless life of a “production unit....”

This is the system we endorse and support when we purchase its products. Consuming flesh foods from modern agribusiness not only pays others to exploit and butcher fellow feeling beings; it not only affirms the view of animals as unconsidered cogs in the machine of profit; but our purchases are what give agribusiness the resources needed to grow and brutalize more of our fellows.

This is enough to compel me to be a vegetarian, to make a daily, public statement against the breathtaking viciousness behind meat, eggs, and dairy.

For me, being a vegetarian is not the conclusion of an impartial set of utilitarian calculations, nor the endorsement of “animal rights.” Rather, being a vegetarian is a statement about the person I want to be: that I could not live with myself if I were to be a part of such unwatchable cruelty to animals. The phrase is: How could I look at myself in the mirror? And that is literally how it happened for me – looking in the mirror and realizing I couldn’t consider myself a “good person” if I continued to pay others to brutalize animals so I could eat them.

But of course, not everyone makes this choice. With factory farms concealed and society structured around eating faceless meat, we can easily refuse to take a stand and set ourselves apart. And if confronted with the hidden realities of modern agribusiness, we can seek out the “less bad” and call it good.

For example: Michael Pollan, quoted earlier, not only isn’t a vegetarian – he actively mocks the “moral certainty” of vegetarians. He fabricates fantastic rationalizations to continue eating animals. For example, he says that thinking in terms of individual animals is human-centric, and that we need to think in terms of species’ interests. Of course, this is exactly backwards. “Species” is a human construct, an abstraction that inherently can’t have interests. Only individuals have the capacity to experience pleasure or suffer pain and thus have interests. That we should eat the flesh of our fellows to advance the “interests” of a species is so absurd, such a perfect inversion of reality that it is truly stunning that an otherwise seemingly intelligent person would be willing to spout such ridiculous nonsense. Pollan is the perfect example of Cleveland Amory’s observation that people have an infinite capacity to rationalize, especially when it comes to something they want to eat.

(This may seem an unnecessarily harsh condemnation of a man who at least is willing to write about factory farms. But Pollan not only mocks vegetarians via laughable strawman arguments, he even rationalizes the brutal act of force-feeding geese to create foie gras! This level of repulsive rationalization should be exposed for what it is.)

Pollan’s unwillingness to seriously consider vegetarianism, combined with his firsthand experience of “our own worst nightmare,” leads his rationalizing capacity to praise “happy” meat from “humane” farms. Having had the time and resources to investigate the various farms available, the pinnacle of Pollan’s praise is Polyface farm, where “animals can be animals,” living, according to Pollan, true to their nature.

So what is Polyface like? Rabbits on the farm are kept in small suspended-wire cages. Chickens are crowded into mobile wire cages, confined without the ability to nest or the space to establish a pecking order. Pigs and cattle are shipped year-round in open trucks to conventional slaughterhouses. Seventy-two hours before their slaughter, birds are crated with seven other birds. After three days without food, they are grabbed by the feet, up-ended in metal cones, and, without any stunning, have their throats slit.

This is the system Pollan proclaims praiseworthy. While mocking vegetarians, he argues we should ethically and financially endorse Polyface’s view and treatment of animals.

But really, how can we expect better? In the end, Polyface’s view is the same as Tyson’s – that these individual animals are, ultimately, just meat to be sold for a profit. It is logically and emotionally impossible for there to be any real respect, any true, fundamental concern for the interests of these individuals when these living, breathing animals exist only to be butchered and consumed. If we insist that we must consume actual animal flesh instead of a vegetarian option, it is naïve, at best, to believe that any system will really take good care of the animals we pay them to slaughter. If you say an individual is just meat, they will be treated as such.

In the end, it really is a question of what kind of person we choose to be. Or, to think about it another way – what is the narrative of our life? Is it that we oppose cruelty or support slaughter? Do we make our own decisions or do we rationalize what we’re used to doing?

I believe there are more important things in life than accepting the status quo, following the norms of society, and taking the easiest path. Furthermore, choosing the road less traveled does not necessitate denial and deprivation. Making our lives a part of something larger expands our life’s narrative, enriches our existence, and allows for real meaning and lasting happiness. Writing our own narrative frees us from the constraints of the “norm.” Choosing to be a vegetarian makes a public, powerful, ethical statement – not just about the suffering of animals, but about the strength of our character. (I discuss this in more detail in “A Meaningful Life.”)

I ask you to consider one more thing.

The average American consumes about three dozen land animals every year. By choosing to be a vegetarian, you will accomplish a great deal of good over the course of your life – you will spare many hundreds of animals from the malicious maws of modern agribusiness.

But get this: Tomorrow, you could accomplish much more, in just one hour!

This may sound like an informercial scam, but it is true – for every person you convince to go vegetarian, you double the impact of your life’s choices. So, if tomorrow you hand out 60 booklets to new people, and just one person decides to go vegetarian, you will have saved, in only one hour, just as many animals as you will save with every single choice you make over the rest of your life.

In other words, if we agree that being a vegetarian is important, that standing up and speaking out for the animals and for ourselves is crucial, then we must also recognize that being an effective advocate for the animals is many times more important. Efficient outreach has truly enormous potential; if you think compound interest is a good deal, effective vegetarian advocacy allows for exponential returns!

In his book, Meat Market, Erik Marcus writes:

When I was a teenager, my greatest ambition was to one day be a millionaire. [Later] I adapted the millionaire concept for purposes of activism.... I wanted to [keep] a million animals out of slaughterhouses.... But is it realistic to think that a typical person could keep a million animals from slaughter? Absolutely! ... At two thousand [land] animals saved per new vegetarian, this means that during your life, if you convince five hundred young people to become vegetarian, a million animals will be saved.

With a reasonable level of investment, each one of us can do this. You don’t need to start a group. You don’t need to pass a law. You just need to make the choice to join with the others who are writing their own narrative, who are working for something bigger than just themselves. We can provide you with lessons from decades of experience and all the tools you need. Vegan Outreach exists to help everyone and anyone, in every situation, be the most effective advocate possible for the animals – for a world not just a bit less bad, but for a fundamentally better world.

Leaflets don’t print themselves, however. Vegan Outreach is dependent upon the financial support of those who recognize the importance of effective advocacy. There are many demands on our limited time and money, and we must choose to invest our scarce resources to do the most good. Working to expose and end the hidden horrors of factory farms is, we believe, the best possible investment. Every new vegetarian pays dividends every year, in terms of their food choices and the example they set for others.

In 2007, Vegan Outreach distributed 1.8 million booklets – 56% more than 2006. This was only possible because, from fiscal year 2006 to 2007, contributions to Vegan Outreach also rose exactly 56%. A donation today will lead to more booklets to more people tomorrow, which will lead to new vegetarians and myriad animals spared this year and every year!

In the end, in our hearts, we know that, regardless of what we think of ourselves, our actions reveal the kind of person we really are. We each determine our life’s narrative. We can, like most, choose to allow the narrative to be imposed on us, mindlessly accept the current default, follow the crowd, and take whatever we can.

Or we can actively author our lives, determining for ourselves what is important. We can live with a larger purpose, dedicated to a better world for all.

The choice is fundamental. The choice is vital. And the choice is ours.

Horse pills

Today I was at Ballard Plaza Pharmacy to pick up Bean's medication. It has to be compounded to get the proper cat-sized dosing, which is why I get it at the specialty pharmacy instead of the vet's office.

I was still in need of empty capsules into which I could shove the horribly bitter antibiotic pills. I purchased the largest capsules available at Whole Foods yesterday, but they weren't big enough.

So at Ballard Plaza Pharmacy, I explained my situation and asked if they could sell me some capsules that could accommodate my pills. They took my pills and went into the back. Eventually, the pharmacy assistant came out and explained that the 00-size capsules weren't quite big enough, so they had to move up a size. OK, fine, whatever, just as long as I get something, right?

He holds up the jar. The capsules looked large, but manageable. "I wanted to show them to you first to make sure you could swallow them. We normally use these for horses."

New antibiotics, Day 2

Last night I couldn't sleep. Actually, I fell asleep quite readily, but then woke at 2:45. This has been a problem for some time. One dose of clonazapam will not help me sleep through the night any longer. Yet any more than one dose (which, for me, is 0.5 mg) will cause me to be sedated and hungover the next morning.

So at 2:45, I took some Suntheanine, which sometimes helps me get back to sleep. No dice. So I went downstairs to the couch, where I could obtain a Percy cat, who I like to refer to as my Percivalium--for no mortal can stay awake with a purring Percy on her chest. Or so I had thought.

My brain was drowsy, but the die-off reaction from the new antibiotic was keeping me awake. As with the previous die-off, there is a great deal of "pain" in my legs. I use the quotation marks because it isn't exactly painful. It feels as if the marrow of my bones has been replaced by something very cold, so cold it burns.

I don't know if the pain is actually coming from nerves in my legs or if it's my brain perceiving something that it's "really there." Because the bacteria is in my central nervous system, when they die and cause inflammatory reactions, well, all kinds of weird stuff happens.

Anyway, the best way I've found to deal with the hot/cold/pain sensation is to provide my brain with overriding sensations. For example, a heating pad (brain perceives heat instead of hot/cold/pain) or a large pile of blankets (brain perceives pressure instead of hot/cold/pain). This doesn't always help, and isn't always practical. So I've found myself relying more on my pain meds.

Finally, I should again like to comment that the Ceftin is perhaps the foulest-tasting substance ON THE PLANET. This morning I emptied one of my quercetin capsules and jammed the Ceftin inside as best I could. That worked well enough, and I was able to take the pill without wanting to burn my tongue and throat with acid. All in all, a positive development.

We are not amused

This morning I took my first dose of Ceftin, the antibiotic that replaces Omnicef, which gave me so much grief a couple of weeks ago.

I've been nervous about starting the Ceftin. The Omnicef caused a severe die-off reaction, and I was fairly miserable (in addition to the gastrointestinal side effects). I know that the Ceftin will likely cause a similar response as the L-form bacteria die. (The bacteria that causes Lyme exists in three forms, each requiring a specific type of antibiotic.) But I can't let fear stop me.

During my last visit with my shamanic healer, I went on a power animal journey. I was told very clearly (and loudly) that the one thing I needed to remember was "DON'T BACK DOWN!" And that I must release my fear and stand my ground.

Anyway, I screwed up my courage and took my first dose of Ceftin. Only to discover that the pill is uncoated and has the most foul, bitter taste you can imagine. Now, I knew that the pill could be nasty. The pharmacy information sheet reads: "SWALLOW WHOLE. Do not break, crush, or chew before swallowing because of the strong bitter taste of the tablets."[Emphasis mine.]

So if the tablet is so nasty as to warrant such a warning, why, oh why--for the love of all that is good and holy--is the tablet uncoated?

Surely, you say, I must be exaggerating. It can't be that bad. Oh, dear reader, I fear I speak the truth. For after swallowing my first dose of Ceftin, I nearly retched. Crying out, I ran for the kitchen, whereupon I grabbed a bottle of lemon juice and drank. Swishing the pure lemon juice in my mouth did little to dull the taste of the Ceftin. I spit, and spit, and spit. And then grabbed the sprayer hose from the sink, and directed the full spray into my mouth, leaning over the sink, hoping that this improvised lavage would remove even a trace of the foul taste. Alas! It was not to be.

I think I will have to purchase empty capsules into which I can place the Ceftin tablets. Otherwise I fear that excessive lemon juice consumption will remove the enamel from my teeth. And possibly, due to such unexpected increased demand, cause undue fluctuations in the lemon futures market.

Anniversary

It's my one-year anniversary with "the illness." Last year on Thanksgiving Day, I mentioned that I was feeling tired and thought I might be coming down with a cold. The next day, I started running a fever. And so it went.

I've been bouncing between self-pity and amazement at the positive things this disease has brought into my life. Self-pity is useless, so I try to focus on the journey I'm taking, inching towards wellness.

My traveling companions are Nick, Martin, three pesky cats, an invisible skunk, and a bucket of true grit. I think I'll make it there...or wherever I end up.

No C. difficile for me!

I just got off the phone with the doc. My five-minute conversation cost me $75. We'll see if insurance will reimburse me any of it. Mind you, I don't blame my doc for charging me--he's got to make a living and he provides a very specialized service. It's just the whole health care system is totally screwed up, but that's a rant for another day.

My C. difficile test results were negative. Which means that the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems were likely a direct side effect of one of my new antibiotics, probably the Omnicef.

So now I'm going to start taking the azithromycin again, along with the Bactrim. If the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems return, we will know that the Bactrim is the culprit. If I do OK, then in two weeks, I'm supposed to start taking Ceftin (the replacement for Omnicef) and see what happens. Hopefully I'll be fine and dandy and unicorns and kittens.

An update in two parts

Update the First:

I recently got some lab results back. The first set is a complete blood count and complete metabolic panel. Everything is normal.

The second set includes TSH, total iron, ferritin, B12, and vitamin D. Everything falls into the normal range, except the B12 which is high.

And I'm still waiting on the C. difficile bacteria test. Hopefully I will hear something within the next couple of days because I want to get back on my antibiotics so I can kick this Lyme disease.

Update the Second:

In my previous post, I called myself another queer, vegan, feminist for equal rights. I realize that the label "queer" may have confused some of my readers. So let me set the record straight: Yes, I'm queer. I am bisexual.

I have been open about this for years--I came out for the first time when I was 16--and I generally assume that people know this about me. However, there are probably friends, family members, etc., out there who never caught on. Even my dear husband had to ask me about my sexual orientation back when we first met, because he assumed I was a lesbian. Good thing he asked.

Anyway, why am I writing about this? I'm happily married, in a secure opposite-sex marriage (I refuse to say "straight" marriage, because only one of us is straight). I love my husband, and I love being married. The license plate on the car reads: THEWIFE. We have a big poster of our wedding vows hanging in our home.

But what if I hadn't met Nick my freshman year in college? What if I'd met a wonderful woman and decided to share my life with her? Then my marriage would not be recognized here in Washington. And with the passage of Prop. 8 in California, it would not be recognized there any longer. And I think it's horribly unfair that my opposite-sex, civil (not religious) Massachusetts marriage is recognized in every state in the country, but a same-sex, civil (not religious) Massachusetts marriage is not. Even if the only thing that changes is a set of genitals.

So I want everyone I know to realize that they know a queer person. So if you hear someone make an anti-gay joke or hateful remark, remember that they're also insulting me. They're insulting your friend. Your family member. Someone you care about.

Anyway, I figure most of you know all this already and have already heard me go on and on (and on and on). But permit me to explain a few things and answer the inevitable questions that arise. Because I think that questions are good. I want you to ask me questions. If this whole bisexuality thing is weird to you and you just don't get it, I want you to ask me about it. The only way we can ever understand each other is through sharing our stories. And understanding leads to compassion, which leads to a better world for us all.

So, question time:

But you're married. Doesn't that mean you're straight now?
No. I'm happily married, but that doesn't mean that my attractions have changed. I still find both men and women attractive. Just like Nick still finds other women attractive.

Does this mean you have to have a girlfriend too?
No. I've never seen gender as anything different than hair color, eye color, etc. So just as I think both blue and brown eyes are attractive, I find both genders to be attractive. I don't have to have a brown-eyed husband in addition to Nick, and I don't need to have a girlfriend in addition to him either. Like I said, I'm very happily married.

If you've never had a girlfriend, how do you know you're bisexual?
Just like you know you're straight/gay/whatever. I can remember back in sixth grade, when everyone started developing silly little crushes. That year I had a crush on both a boy and a girl. This was actually really confusing to me for a few years. I mean, I knew that most people were attracted to people of the opposite gender. And I knew that there were gay and lesbian people. So I thought that I just needed to pick one. Because I knew that people would never question me if I were straight, and that most people would come to accept me as gay, but bisexuality was never discussed as an option. Eventually I read something in a magazine that mentioned bisexuality, and it was a light bulb moment. There was a word that explained what I was feeling. And there were other people like me!

So, no, I've never had a girlfriend. I married the first person with whom I was in a serious, long-term relationship. We met when I was 18, and he's managed to put up with me for twelve years (and counting!).

How come you never told me? Or, why are you saying all this now?
If I never told you personally, it's because I figured you already knew. Or I figured that the conversation would be awkward, especially since I am married and bringing it up would make you think about my sex life, which I probably don't want you thinking about. And you probably don't want to think about it either.

So why am I saying all this now? Because either you already know and are totally bored by this, or you didn't know and this might influence you to either support gay rights or to be more vocal about that support. After Prop. 8 stripped same-sex couples in California of their previously legal marriages, I realized that this fight is not over. It's only just begun. And we will win. And part of winning is speaking out and gathering support.

Why do you use the word queer? Isn't that derogatory?
I prefer to say that I am "queer," rather than "bisexual," because "queer" has a political connotation. We are reclaiming words directed towards us in hate and making them our own.

End of questions. However, if you have more questions, please ask. Seriously. I'm not shy about who I am, and I'm happy to explain myself further.

And, please, remember that we--the queer community--are everywhere. We are your sisters and brothers, daughters and sons, aunts and uncles, nieces and nephews, neighbors and friends. We've all got to share this little world together. We all deserve compassion, and we all deserve love--even if that love looks a little different.


Seattle Stands AGAINST Proposition 8! from Eli Martin on Vimeo.

Just another outspoken queer, vegan, feminist for equal rights

Despite a horrible headache and crushing exhaustion, I managed to drag my sorry self out to the Seattle marriage equality rally and march today. Nick and I were two of the approximately 6,000 Seattlites who joined hundreds of thousands of people worldwide who spoke out for the right to marry. (While Seattle police put the initial count at 6,000, I'd guess that we had something like 10K or more people out there once the march made it to downtown.)

The rally begain in Volunteer Park, and then everyone headed down to Broadway, then over to downtown on Pine. We ended up in Westlake Center, and the crowds were so large that the police had to close off surrounding streets. All along the path, there were supporters cheering from the sidewalks, business doorways, and apartment balconies.

It was a beautiful outpouring of support, and I'm really glad I made it to the event. I might pay for it tomorrow, but it was worth it.

Still unpleasant

On Sunday I wrote about my new antibiotic and how it had HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal side effects. While I stopped taking the antibiotic on Sunday, and the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal side effects eased up slightly for a day or so, they came back with a vengeance on Tuesday. I spent all day yesterday waiting for a call back from the doctor. I finally heard from his assistant around 7 PM.

I was told to come in this morning (Thursday) to pick up a stool sample kit to bring to a lab to determine if the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems are actually being caused by C. difficile bacteria. It's common for people taking antibiotics to develop an overgrowth of this bacteria, which can lead to pseudomembranous colitis.

I shall spare you, sensitive readers, the details of my visit to the lab. They are as unpleasant as you might imagine, though quite funny on a third-grader-poop-is-funny level. Which is the level I am usually operating on.

Of course, because it's Thursday, it is highly unlikely that my lab results will be available until next week. I have a phone consultation scheduled with my doctor next Friday (Nov. 21) to discuss what all this means. In the mean time, I have stopped all antibiotics. So I'm now imagining the Lyme bacteria having a freaking party in my body, doing keg stands like frat boys and popping off babies left and right.

Oh, and have I mentioned the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal problems? I guess I get to live with them until...whenever? Because I'm having soooo much fun.

My acupuncturist this morning diagnosed me with "cold in the large intestine" (it makes sense in Chinese medicine). He treated me for that, and I'm going to try to eat "hot" foods in the hope of managing some of the HORRIBLE DISGUSTING TERRIBLY AWFUL symptoms. I've been taking ginger supplements, which seem to help a little. (Ginger is a "hot" food.)

So...yeah. Still pretty unpleasant around here. But at least I get to make totally immature third-grade poop jokes. That always makes things better.

New doctor report

Today I saw my new primary care doctor, Dr. Kneisl, at One Sky Wellness. While I didn't have any pressing medical concerns for her to address (Dr. R is handling my CFS/Lyme care) and therefore cannot completely assess her abilities as a physician, I definitely liked her personality and style. She didn't bat an eye when she saw my Lyme treatment protocol, and said she was really glad I'd found someone who was giving me appropriate treatment for such a complicated disease.

Also, she's worked with First Nations health care, which has given her an interest in and respect for shamanic healing. (Whereas in Oklahoma, the tribal health care centers were staffed with bored, overworked, and generally uncaring doctors who didn't seem to learn anything from the job, other than a contempt for humankind.) She seemed excited when I mentioned my shamanic healer, and she even said she'd recommend her to other patients who were interested.

So, yes, she's very open-minded, but also has a Western medical background, which to me is the best of all worlds.

I'm getting my vitamin D, B12, iron/ferritin, and thyroid levels checked again. It will be good to know where I stand on all those potential problems. (The doc said that 95% of the people she see in Seattle are vitamin D deficient! Yikes!) I think I should be fine on the D, B12, and iron/ferritin; mostly I want to make sure I'm not overdoing it on the D and iron, now that I've been heavily supplementing for a while. I will definitely be interested to see what my thyroid numbers look like now that I'm on meds.

Other news: 1) I'm getting a massage today. Happy dance! 2) No word back from Dr. R yet about new antibiotics, but I should hear from him later today.

Medication update

I'm feeling much better now that I've stopped taking the offending antibiotic. This is good (horribly gastrointestinal side effects going away) and bad (I think it was working to kill off the Lyme bacteria). I fear that the joint pain was a sign of a die-off reaction, meaning that the nasty little bastards were being killed. Which is good.

Still, I obviously can't take the antibiotic, and today Dr. R will probably have a new prescription for me.

I'm also going to meet with a new primary care physician in about thirty minutes. Stay tuned for the report! Hopefully she'll be cool about my Lyme treatment and about my being vegan. The latter is typically not a problem, especially once I prove to be more educated about vegan nutrition than most doctors. The former...well...there could be issues. (See the Lyme War.) But that's why I'm going to a holistic practice, so I think my chances are pretty good of finding someone open-minded and at least vaguely knowledgeable about Lyme.

An unpleasant weekend

I started taking the Omnicef (new antibiotic for the spirochete form of Lyme bacteria) last Thursday. By this weekend, every joint in my body ached. Last night I woke up at three and couldn't get back to sleep because everything just hurt. I took more Vicodin, but it didn't cut it.

This is likely a die-off reaction as the spirochetes are attacked by the new antibiotic. So it's good that the medication works, but bad that it's painful.

And I'll protect your delicate sensibilities, dear reader, by glossing over the HORRIBLE DISGUSTING TERRIBLY AWFUL intestinal side effects of the drug. Side effects that were severe enough to warrant a call-back from my doctor on a Sunday.

So while the Omnicef was working, I'm supposed to stop taking it. Of course, I got the call about ten minutes after I took my morning dose. Just my luck. Anyway, Dr. R will be back in the office on Tuesday, and he's thinking about what new antibiotic to try instead of the Omnicef.

So now I have a nearly full bottle of Omnicef, along with a matching bottle of Rifampin, both of which I'm not to take any longer. It's frustrating knowing that somebody without medical care could otherwise benefit from these drugs, but I've just got them sitting around in my medicine cabinet. Anyone know if there's a drug donation program? I feel bad just throwing away $250 worth of antibiotics, even if the personal cost to me was a mere $20. (I'm so glad I have insurance. This disease is expensive enough without having to pay full price for the drugs.)

Good cat

Even when I'm not feeling well, I can count on having a kitty around to nap with.



Good kitty.

Don't stop believing

I LOVE MY CITY. Don't stop believing, Seattle.



CNN:



A crowd of liberal hipsters spontaneously break into the national anthem:

Medical Update

Now that the election madness is finally winding down...whew! I'm still a little giddy from yesterday, and I imagine I'll be crashing pretty soon. It was totally worth it. Totally.

I saw Dr. R again today. Here are the new developments, in no particular order:

1) My overly sensitive nose (dubbed "Supernose" for short) might be a side effect of the Rifampin I've been taking for the bartonella infection. So I'm switching from Rifampin to Bactrim. I'll probably be taking it for another five or six months. And I'm hoping that the Supernose will go away.

2) To combat the nasty die-off reactions I've been having, I will be taking yet another supplement. It's an antioxidant mix called FibroBoost. It, along with the quercetin I'm taking, will hopefully limit cytokine production and thereby prevent some of the unpleasant die-off symptoms.

3) I'm to continue taking nystatin to prevent yeast overgrowth from coming back, but I'm done with the diflucan. Yipee!

4) I might switch up my sleep meds because the currently prescribed dose of clonazapam is leaving me a bit sedated in the morning. I may switch over to Ambien CR, but I need to discuss this with one of my other doctors first.

5) I'm getting fat. Well, not fat, but I am gaining weight now that my appetite has improved. While it's good that my appetite has come back, I simply can't be as physically active as I used to be (at least not yet). So I'm gaining back the weight I lost. I can still wear all of my old clothes, but if I don't get a handle on balancing caloric intake/output, it'll be time to go shopping for some new jeans. So I need to figure out how to eat enough good things, while keeping the calorie in line with current physical limitations.

6) I'm adding a new antibiotic to my regime. As I've mentioned before, the Lyme-disease-causing bacteria, B. burgdorferi, can change form inside your body. It exists in three forms: the spiral shape that has a cell wall, the cell-wall-deficient form known as the "L-form,", and the dormant or latent cyst form. I'm currently taking azithromycin for intracellular Lyme. Now we're adding Omnicef as an anti-spirochete drug. Eventually we'll add another medication to fight the cyst form of the bacteria. It's important to eventually treat all forms of the bacteria, because it's a tricky little bastard and can morph between the three forms if it is threatened on one front.

7) Next week I'm meeting with a new primary care physician. I'm moving to a holistic practice that employs MDs, NDs, acupuncturists, massage therapists, etc., in the hope that my doctor there will be open-minded and somewhat knowledgeable about Lyme disease (unlike conventional infectious disease physicians and internists). Also, it will be refreshing to have a primary care doc who doesn't dismiss "alternative" treatments but who also has the benefit of Western medical training. I hope it goes well.

8) Later this month will mark the one-year anniversary of my illness. I got sick on Thanksgiving day last year. Hopefully this year will bring a little wellness along with the pumpkin pie. (Or pumpkin ice cream!)

Summary:

It looks like the yeast overgrowth has been successfully treated. Now we're focusing our attack on the B. burgdorferi and bartonella. We're using Bactrim for the bartonella, and azithromycin and Omnicef for the B. burgdorferi. More antibiotics mean that I can look forward to more side effects and die-off reactions. But it might just also mean that I'll get better one day.

New med list:

Azithromycin, Omnicef, bactrim, nystatin, clonazapam (may change), vicodin, sertraline, Astelin nasal spray, Yasmin, ashwagandha, quercetin, B-vitamin complex, nasty drink mix, d-ribose, n-acetyl-l-cysteine, acetyl-l-carnitine, calcium, vitamin c, vitamin d, iron, omega 3, probiotics, FibroBoost, and B12.

It's still real

I was kind of afraid that maybe the victory was a giant sham, pumped into West Coast televisions to prevent riots. But no, it's real. It's really really real!!!

Because I ended up in Georgetown, I missed the thousands of people marching and dancing and celebrating in the streets (in the University district, in Capitol Hill, in Belltown) last night, but I found pictures:







I'm thrilled that Obama won, and I LOVE MY CITY! The riot police stood around and watched...one officer described it as a "big hug fest."

So despite the disgusting success of Prop. 8 in California (banning same-sex marriage), I'm filled with hope and love and joy.

I might not have had the energy to keep up with the revelers who were still going at 2:30 AM last night, but for now, I'll get up and dance around the room.



Some more thoughts:

1) McCain's concession speech was classy and made me remember why I used to like the man, before he became Campaign McCain and turned nasty. Now that the campaign is over, he can be the senator I remember. His speech brought forth cheers and applause (sincere, at that) from a crowded bar of liberal hipsters in godless Seattle. (Well, except when he mentioned Palin.)

2) Obama's speech made me cry. Not easy to do. "It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled - Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America."

You should have heard the cheering in the bar when he said not only "black, white," but went on to include other ethnic minorities. And then "gay"--the crowd thundered so much that I would have missed "disabled and not disabled" but for the captioning. And, yeah, it made me cry.

3) Cutest thing ever? ""Sasha and Malia, I love you both so much, and you have earned the new puppy that's coming with us to the White House."

4) OMG IT'S REAL:

Yes, we did!

After discovering that The Stranger's election party was filled to capacity, Nick and I made our way to the Georgetown Liquor Company, a bar serving vegetarian fare and, naturally, booze. We watched the election results roll in on the television, and I screamed and clapped and cried along with my fellow Seattlites.

I'm so hyped up right now, I fear I won't get to sleep anytime soon. But it's totally worth it. History has been made, and I can suffer a little tomorrow for staying up too late to watch it.

In addition to the Obama victory, it looks like many of the local races in Seattle and Washington are going as I'd hoped. And the NY Times just called a Yes win on Prop 2 in California! So a good night.

I'm so excited, hopeful, and proud. This is an amazing day. Wow. Just wow.

Vote