I stink.

No, really. I stink. Like, literally. I smell bad.

The last few days in Seattle have been brutally hot. (Today it cooled off, which has greatly improved my mood.) We broke our all-time high on Wednesday and hit 103 degrees Fahrenheit. Mind you, most homes and many businesses do not have air conditioning, and our buildings are designed for a climate of rain, not one of blistering heat. So it got hot. Like, really hot. And if anyone wants to tell me that it wasn't that hot because it gets hotter elsewhere, you can suck it. I lived through an Arizona summer with a broken swamp cooler, so I know me some hot.

Anyway. It was hot. And I was sweating.

The worst thing about metronidazole is the smell. The pill has a foul taste, but I put it inside an empty capsule, so that's not so bad. But it smells. And it makes all of your body fluids smell. Including your sweat.

My bedroom smelled like locker room/sick room combo. I was showering at least three times a day, so my towels started stinking after a day. Even the shower stall started to harbor the faintest hint of metronidazole stink. Perhaps undetectable to the untrained nose, but once you've lived with the metro-stink for a few months, you'll recognize it anywhere and at the smallest concentrations. (Don't even get me started on how difficult it is to scrub the smell out of the toilet bowl. Right. It's disgusting.)

This, naturally, made me very cranky. I also broke out in hives due to heat rash. And I got sunburned (in the shade!), which made the rash worse.

All in all? Yuck.

Brevity

It's very hot here. I don't like it. And so everything I have to say will be brief:

My neuro/cognitive symptoms are getting worse again. I had a nasty episode the other night. Unable to speak, uncontrolled shaking, splitting headache, bizarre thoughts.

Reading is increasingly difficult again. Concentration falters.

I've also had a bit of neuropathic pain, usually in my legs but sometimes up my arms.

I'm very tired. I feel my energy level slipping back down. I'd improved up to 30% of normal...I'd say I'm back down to 20 - 25% this week.

The heat could be a factor. I could be having a die off reaction. Or it could be that my symptoms are just returning and we need to hit back harder.

Generic Bicillin

I've been using a generic form of Bicillin for a while now. Trial and error has allowed us (me and my husband) to get better at the whole injection process. Which is great, because we're saving a whole heck of a lot of money.

In the U.S., Bicillin is not available as a generic. It's brand name only, and is sold pre-mixed in syringes. Ten doses (ten syringes) costs about $510 at Target and Costco. Walgreens quoted a price of around $600. For ten doses. Since I'm taking three doses per week, you can see that this is really expensive.

By contrast, my most recent order of generic benzathine penicillin (the same active ingredient as brand-name Bicillin) cost a total of $120.30, including shipping from overseas. That order contained 10 vials of 2.4 MU benzathine penicillin. My dosage is 1.2 MU, three times per week. So I paid $120.30 for 20 doses. Compare that to the U.S. pricing of $1020 for 20 doses. Yikes.

Admittedly, there are additional costs. I had to purchase syringes and needles. I got a box of 100 5ml syringes, a box of 100 18 gauge blunt-fill needles, and a box of 100 19 gauge needles for injection. That all cost around $90. I also got a box of band-aids with unicorns on them, because, you know, unicorns are freaking awesome.

Anyway, I thought I'd blog a little about how I prepare the generic Bicillin for injection, as well as how it's injected. Mind you, this is only what I do. I am not a doctor. I have never played one on TV. I am a horrible role model. I run with scissors, talk to strangers, and swim after eating. I am the person your parents warned you about.

So, yeah, disclaimer: Talk to your doctor before you start or change any medication. Have a trained professional show you how to use said medication. The following information is just a description of my activities and should not encourage anyone to do anything.

So, here's what I do. First, I gather all my supplies. The supplies list:

• One box of generic Bicillin (benzathine penicillin), containing 2.4 MU, which equals two doses of 1.2 MU (my dosage)
  
• Two 5ml syringes
  
• Two 18 gauge blunt-tipped needles to fill the syringes
  
• Two 19 gauge, 1.5-inch-long needles for injection
  
• Alcohol wipe to sterilize the injection site
  
• Bandage to cover the injection site, post-injection
  
• Optional: Tissue or gauze to cover the injection site after withdrawing the needle, to absorb any blood or Bicillin that leaks out
  

Now I put those supplies to use. I present a series of four videos. My camera can only handle about three minutes of video at a time, which is why it's broken down into segments. Sorry about that. On the plus side, you get to watch my husband jab a big needle into my ass.

The videos, in order:









You'll notice a distinct lack of cursing in the video. This is unusual. But I wanted to keep it clean. Typically I try to think of really inventive curses, which helps distract from the pain. And by "curses," I mean shouting things like, "Dick Cheney! Global warming is a myth! I like eating meat! Republicans! Marriage is between a man and a woman!" See, that's much more inventive (and damning) than the standard selection of four-letter words.

Nothing new

There are a few people I see semi-regularly (hair stylist, massage therapist, etc.) who without fail ask how I'm doing regarding my Lyme disease. And the answer is always the same--it sucks. The individual symptoms may vary (pain, malaise, brain fog, insomnia, exhaustion, nausea), but it all adds up to "I'm still sick."

I know that these people ask about my health with the best intentions. And I appreciate that they care. It's just that sometimes there's this shock, kind of like "How can you not be well yet? It's been ages!" And I know that it comes from a caring place, so I'm not annoyed with the person I'm talking to.

I'm annoyed with the disease. While there are many diseases that require prolonged treatment--no one would be surprised if I were undergoing months or years of cancer treatment--Lyme isn't well known or understood amongst the general public (or most doctors, for that matter).

So month after month, I have to keep explaining that I'm not any better...yet. Or that I've improved from 20% of normal to 25% of normal, which doesn't really sound like much. And because of the controversial nature of Lyme treatment, I feel unreasonably defensive about my treatment choices. So I explain that advanced cases of Lyme require months or years of antibiotic treatment, and that it's going to take a while longer before I get well. And, yes, I'm confident in my diagnosis and my doctor, and I think we're pursuing the correct treatment course.

This defensiveness is my problem, not those with whom I interact. So it's something that I need to deal with and work on. At the core of it all, I think, is that every time someone is surprised that I'm not doing better, I'm reminded of how long it's been. And how much more time and effort and suffering and money is going to be involved before I'm anywhere close to "normal."

Self-pity isn't pretty, so I'll only indulge a little here. But, dammit, I've been sick for over a year and a half. It took nine months to get diagnosed properly. I've been on medication for ten months. The side effects suck, and the die-off reactions suck. I wonder if it'll ever stop. If I'll ever get my life back. I wonder how many years this disease will steal from me. I wonder what permanent damage will be left if I ever achieve remission.

And then I have to also realize that this illness has taught me a lot. While I've lost some opportunities, I've gained others. So, you know, silver lining and blah blah blah. Just to balance the scales and to let you know that I'm not always such a downer. With that in mind, I leave you with a joke:

A husband comes home to his wife, who has Lyme disease. He hands her a bouquet of flowers and says, "Honey, let's go upstairs and make love."

His wife asks, "Well, which one is it? I can't do both!"

That one was so funny I'll give you another for free:

A man with Lyme disease was bragging to his friends about how he got lucky the night before. "Yeah, man," he said, "I was able to find my car in the parking lot!"

Insert laugh track here. And finally, one I made up:

Q: How many Lymies does it take to screw in a light bulb?
A: (long pause) What did you say about the refrigerator? I'm confused.