Sunday, November 30, 2008

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.

Saturday, November 29, 2008

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.

Wednesday, November 19, 2008

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.

Tuesday, November 18, 2008

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.

Saturday, November 15, 2008

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.













Thursday, November 13, 2008

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.

Tuesday, November 11, 2008

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.

Sunday, November 9, 2008

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.)

Friday, November 7, 2008

Good cat

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



Good kitty.

Thursday, November 6, 2008

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:

Wednesday, November 5, 2008

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:

Tuesday, November 4, 2008

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.

Monday, November 3, 2008