Obligatory Update

It's been a while since I last updated, so I feel compelled to write something.

It's been a gloomy couple of weeks. The Bicillin doesn't seem to be doing much of anything, other than making my butt hurt. I haven't had a clear die-off reaction, but it could just be subtle this time.

I do know that I'm running (still) at about 20% of normal (where "normal" is how I used to feel, before I got sick)--on a good day. On a bad day I'd say I'm slipping down to 15% capacity. There have been more bad days than good.

I'm afraid that the Bicillin isn't going to cut it. That I'll spend six months and a few thousand dollars getting nowhere, and then have to go on IV antibiotics. I won't even go into the fear that IV antibiotics won't help, and that remission, to say nothing of a cure, will never come about.

On the bright side, I will hopefully be able to stop taking the Levaquin within a month or so. (I'd have to check my calendar for a more precise date.) Perhaps we will knock bartonella out of the picture, and then go hunting after other potential co-infections.

Captain! She's sprung a leak!

Last night Nick gave me my Bicillin injection like usual. It wasn't as painful as the past few have been, which was a nice change of pace. This time I had my iPod on and was blasting aggressive and distracting music while I was injected. (Ministry's "Just One Fix" is a nice choice, by the way.)

After Nick pulled out the needle, both blood and Bicillin started to leak out of the puncture mark. Not gushing out or anything, but steadily leaking.

I cursed. Nick cursed. "This stuff is too expensive to leak!" I growled.

Nick (helpfully) called out, "Yikes! Your butt's leaking five dollars a minute!" He paused and then said, "Wow, I bet you've been waiting all your life to hear that."

Luckily for him, I did not have any heavy objects nearby, and I was immobilized on my stomach, pants around my knees, with blood and antibiotic leaking from my ass. Such a pretty picture. Domestic bliss and all that. "You suck," I said.

From behind the closed bedroom door, our calico cat howled, indignant that she was not allowed to be a part of what was happening because it was CLEARLY VERY EXCITING BECAUSE SHE WAS ON THE OTHER SIDE OF THE DOOR. Why do we do this to the cat? We are very bad people, clearly.

Sigh.

This is the second time I've leaked Bicillin post-injection. Very uncool.

Also uncool is that the injections have started to hurt more. Like, a lot more. The first few were OK. You know, no big deal. Yeah, they were unpleasant, but not bad.

But recently, they have hurt. Let me put this into context for you.

I like needles. I've had various piercings, and I enjoyed the actual procedure of piercing so much that it's amazing my face doesn't resemble a pincushion. For a visual--when I pierced my lower lip, a guy drove an 18-gauge needle through the flesh and stuck a stud in the hole. No piercing gun. Just one nice needle.

I have a tattoo, and it was very pleasant. I liked the process. I liked the little needle poking over and over for about an hour. I would have many more tattoos at this point, had I the money to pay for them.

So it's not like I'm a wimp when it comes to needle sticks. My largest piercing was, I believe, a sixteen-gauge. (The smaller the number, the bigger the needle.)

So one would think that a 21-gauge needle for Bicillin delivery would be no problem. But you'd be wrong. See, now that I've been injected three times a week for a few weeks, there are lots of bruises and lumps and knots all over the available injection area. So the tissue is tender and the muscle probably inflamed.

Also, I should point out that the needle is about 1.5 inches long. And it goes all the way in. And then the Bicillin? It most closely resembles Elmer's glue in color and consistency. It's thick and sludgy. And there are giant air bubbles in the needle, which you can't get rid of because the Bicillin is all glue-like. So you just have to inject the air bubble. Which hurts.

So there you are, 1.5 inches of needle in your butt, slowing having this thick gluey stuff pushed into your muscle tissue. Colorful language is often involved.

So when, after all of this--after you've paid $50 per shot and it's painful and annoying and leaves bruises--the Bicillin leaks out...well, it is not cool. Not cool, dude. Seriously.

Another diagnosis

I have not written anything about this previously, because a person's medical information is a private matter. But now that the facts are a little more established, Nick has given me permission to discuss his medical situation in more detail.

For a few years, Nick has not felt 100% well. He'll have days where he's totally fine, then a few days where he's not quite right, like he's coming down with a cold. Or is just foggy and distracted and tired and unfocused. And then he'll be OK, and then he won't.

He's seen several doctors for this, beginning back in 2005. Finally in 2007, someone suggested that his problem might be sinus-related. While he doesn't have sinus pain, sometimes he's a little snuffly. And he has shown signs of an active sinus infection in the past.

In 2007, he had sinus surgery, which didn't really do much. His current ENT says that the first surgeon didn't take out enough sinus bits, and so he needs another surgery.

The latest round of trouble began back in October 2008 or thereabouts. Nick has been on antibiotics for sinus infection and, recently, anti-fungals in case the infection was fungal in origin. It hasn't really helped.

So we are still looking at whether or not surgery is going to be necessary.

Meanwhile, I've been dealing with a very clear case of Lyme disease. I think you see where this is going.

While we know that Lyme can be transmitted from mother to child during pregnancy, it is debated as to whether or not the Lyme spirochete can be sexually transmitted. (The most famous spirochetal infection--syphilis--is obviously an STI.) But even if it's not, Nick and I have been married for eight and a half years, and spent the three years before that in the same place (college), so we've been together in the same locations, exposed to the same probability of infection via tick, for a really long time. So we've been wondering if Nick might just also have borrelia dancing around inside him.

Nick's Western Blot test came back IgG positive, and his CD-57 count was very low (30). Add in his albeit mild symptoms and history of living in Lyme endemic areas, and there's a decent chance of infection.

I should take a break here and say that not everyone who is walking around with Bb (Lyme spirochete) bacteria in his body has active and/or chronic Lyme disease. You might have this bacteria kicking around, and be totally asymptomatic and healthy because your immune system is doing its job.

But if your immune system runs into trouble, the infection can become active and cause symptoms.

So does Nick have a sinus infection? Does he need surgery? Does he have Lyme borreliosis? All three? Because a weakened immune system (either weakened by Lyme or sinus infection) could allow the other problem (either Lyme or sinus) to emerge. And anatomical issues (sinus structure) could make him more vulnerable to sinus infection, leading to immune weakness...and so on.

In any case, Nick has now joined the Official Kool Kids Lyme Club. We've got a secret handshake and everything.

He's starting off on Ceftin and Biaxin, because they are good choices to fight both Lyme infection and sinus infections. Dr. R (our LLMD) hopes that because his symptoms are so mild that a short course of treatment (six months, maybe more) will be all it takes for my dear husband to regain his footing.

We're still evaluating the sinus surgery option. Surgery might help (clear up the sinus trouble and the immune system can focus on fighting the Lyme), but it could also make things worse as the body is stressed by the surgery itself. At this point, we're going to see how things go over the next month and evaluate our options as we go along.

As for my life, I'm doing none too well this week. I'm exhausted, and yet insomnia occupies the night hours. And I hurt and can't think clearly and am worried about the Levaquin/tendon issue. So now I'm wearing a wrist brace--which is totally sexxxy, so at least I look good.

Good and bad

First, the good! My generic Levaquin arrived from "Canada" today. I use the quotation marks because, although I ordered from a pharmacy located just across the border in Vancouver, B.C., my order was mailed from Germany. The boxes are dinged up and look a little scruffy, but the pills contain the same stuff as the expensive variety. So now I've got a little over three months' worth of Levaquin, which will cover the (expected) remainder of my bartonella treatment.

Now, the bad! One possible serious side effect of Levaquin is "associated with an increased risk of tendinitis and tendon rupture in all ages." So sayeth the Levaquin website.

In the past few days, I've been getting pain in my hands and in my right wrist, particularly while typing or other fine hand movements. It's very mild, and is possibly unrelated to the drug. However, I've informed my doctor and am monitoring the situation closely.

So here's hoping that I didn't just buy a bunch of medication that I later can't use.

Insurance company? Yes, I still hate them.

Today I was told that the address I was given yesterday--which is different than the one printed on the claim form--is not correct

Instead I should use a third address, which is also nowhere to be found on their website or any of their forms.

I should note that both of these not-on-the-form addresses I have been given in the past, and then specifically told not to use.

I. Hate. My. Insurance. Company.

Reasons why I hate my insurance company, a random selection:

1) Bicillin. Denied. Thanks, because I totally have over $500 to spend each month on one drug.

2) Levaquin. Denied. Again, thanks. You suck. So I'm turning to our lovely neighbors to the north and getting my Levaquin from Canada. Still, it's over $100/month.

3) You have not processed my last three claims from my LLMD. One of them was from November. That's, like, a long time ago, ya know? And as for my January and February claims? You say to mail them to some mysterious address other than the one printed on the claim form? What? Do you even exist? Am I talking to some random dialogue generator, formed from the collective notes of absurdist playwrights? Or do your operators sit around huffing paint thinner all day long?

What I should have said was nothing

Today I saw my psychiatrist, who handles sertraline and clonazapam portion of my medications. She's a great doctor, and I quite like her. Unfortunately, she's not Lyme-literate, but she is (vaguely) receptive to my treatment protocol. Today I gave her a copy of the ILADS treatment guidelines, and hopefully that will help her understand that my LLMD has very good reasons for what he's prescribing me.

Anyway, she was asking how I'm handling the illness and that sort of thing, and one idea led to another and I oh-so-casually mentioned that part of my change in attitude was due to an amazing conversation I had with a cat. (I should write this up someday, but the quick distillation of what he shared with me was that each second, each moment, even if not ideal, even while struggling and in pain, has value and should be fully appreciated and lived.)

Now, take a step back. I've just told my psychiatrist that I'm talking to cats. Which brings me to the title of this post...what I should have said was nothing. (With props to Mike Birbiglia, from whom I stole that line.) So I had to explain about talking to animals. Luckily, she didn't send me off to the psych ward, but I think there was a hint of a raised eyebrow. To be expected, obviously. I know I've done it, and I still think it sounds crazy.

So that's how I started my day. Later, I tripped over an unseen metal bar. Gravity took over and I ended up with a rip in the knee of my favorite jeans, a skinned and very bruised knee, and a giant goose egg of a bruise on my ankle (the one that hit the bar). The tragedy in all of this is not that I was bruised and bleeding, but that I damaged my favorite jeans. Because I currently possess only two pairs of jeans, and now my favorite is torn. Not unwearable, but still.

I wish I could blame the trip-and-fall on Lyme somehow--poor motor skills or something--but this is the sort of thing I've been doing my entire life. So at least some things never change!