Mr. Pickles

Well, my PICC line (Mr. Pickles) was successfully placed yesterday. I've had two doses (each 2 grams) of Rocephin thus far, and my dressing has been changed.

The medication has been tolerable. Each time I've gotten pretty dizzy after the infusion. Tonight I was really slurring my words for about a half hour, and there were some minor muscle spasms. I'm also really tired. I slept until 3 PM today, and I was ready to go back to bed a few hours ago.

As you may know, the line has a little port that hangs down your arm and can flop around unless you secure it. (This means that I have THE WORLD'S GREATEST CAT TOY coming out of my arm.) The nurse gave me this white mesh cover that's working fine, but it's so boring. I'm thinking about getting some interesting socks and converting them to PICC cozies. Mr. Pickles is a snazzy dresser, you know.

I could also buy arm warmers and pretend to be a hipster. And today I ordered a few pairs of arm sleeves from Hijab Al-Muminat. They come in a variety of colors. I got fuchsia, red, kiwi green, lemon yellow, beige, and brown. Normally they're to be worn to provide modesty for a Muslim women if she's wearing loose or short(er) sleeves. But they look like they'll work wonderfully for my purposes as well!

PICC going in today

As you may recall, I requested help naming my PICC line. A friendly Gerbil suggested "Pickles." I quite like this suggestion.

So my PICC will be named....drum roll please...Mr. Pickles!

Mr. Pickles, so I hear, is a fine, upstanding young man. He is dating a lovely lady named Ivy Biotics, known to her adoring nieces and nephews as Auntie Biotics. Mr. Pickles and Ivy are quite serious about their relationship, and they plan to see each other every day.

And, yes, I am fully aware that I deserve to be shot for writing that last paragraph.

Don't trust anyone over 30

Tomorrow I will be 31. My birthday present will be a PICC line and my first dose of IV Rocephin. It's not cake, but it'll do.

Sweetness and irony

First, the sweetness.

This morning marks the beginning of My Big Birthday Weekend, which lasts until Tuesday (my actual birthday). On Tuesday, I'm getting my PICC placed and will receive my first dose of Rocephin, so the fun is really happening Saturday - Monday.

Anyway, this morning we went out to breakfast/lunch/brunch/whatever at The Wayward Vegan Cafe, which is my second home in Seattle. Pretty much everything about them is awesome. Like that they serve the most amazing cinnamon rolls on the weekends. Today the cinnamon rolls were even more amazing. It appears that Nick called ahead and arranged BIRTHDAY CINNAMON ROLLS.

I was sitting at our table, reading The Stranger, when the entire staff came out with a huge plate of cinnamon rolls (with birthday candles!), singing "Happy Birthday" loudly. Delight and embarrassment fought for a moment, but delight won the day.

 

All in all? Pretty frickin' awesome. The Wayward is the bestest. If you're in Seattle, you must visit. And if you're there on Friday or Saturday (and sometimes Sunday) morning, you'll probably see me there.

Now, the irony. Tonight at midnight there was a screening of Paranormal Activity at a theater in town. Only at midnight, which is way past my bedtime. But it's supposed to be this great horror movie, and it's not playing after tonight. (They're test-marketing it and/or building hype in a few cities, I guess. It'll probably come back in a wider release.) So you see my dilemma. Sleep? Or totally cool horror movie?

In the end, I was "responsible" and decided that going out late and not getting proper sleep would do me no favors. So we stayed home and went to bed.

Except I can't sleep. The Vicodin and gabapentin and clonazapam are just not doing it for me tonight. I took some more Vicodin, but still no relief. I got out of bed and did some yoga stretches. Nothing.

So now it's 2:30 in the morning, which is when we'd probably be getting to bed if we'd gone to see the movie. I'm still awake, and I've got no movie.

Irony, how you mock me!

And in completely unrelated news, I discovered that my broccoli has club root, which means my entire garden plot has the fungus in the soil. Which means that all brassicas and many root veggies will not be happy. And what have I planted? Broccoli, cabbage, brussels sprouts, chard, kale, and carrots. (My lettuce and spinach and radishes will be just fine.) So now I've got garden problems to solve.

Or ignore, as the case may be, once my PICC goes in. Just doing a winter cover crop is sounding pretty good right about now.

No PICC today

Four hours before I was supposed to have my PICC put in, my insurance company decided that they needed to review my case before approving IV antibiotics.

So now I don't know when (if?) I'll start the IV antibiotics. Because they are expensive. And my insurance company sucks. And I'm really pissed off right now so I'd better just stop typing before the really bad words start pouring out.

The old familiar sting

Tonight is a very special night. Tonight is my last Bicillin shot.

Cue cheering, dancing in the streets, smiling babies, parades, kittens hugging baby sloths.

Of course, I'm only stopping the Bicillin because I'm getting the PICC put in and will begin IV antibiotics on Wednesday. (Don't cry, baby sloth!) I know that the PICC come with its own set of problems, but I have to say that I'm really happy to stop the thrice-weekly butt stabbing Bicillin shots.

Next Tuesday

I'm scheduled to have my PICC put in next Tuesday. On Wednesday, a nurse from the infusion service will come out to change the dressing and give me the first dose of Rocephin.

So this means that I have until Tuesday to come up with a clever name for my PICC. Because saying "my PICC" or "my line" or "this thing in my arm" is so dull. And it's more fun to name things!

I'm leaning towards naming it "Ivy." Get it? IV? Ivy? I AM SO FUNNY OMG LOL!

Another possibility is "Cathy" (catheter, Cathy, ha ha). Or I could go with something completely unrelated like "Mr. Skippy." But I think Ivy is my favorite idea so far.

However, I am open to suggestions. Anyone got a good name for my PICC?

"Nuke the site from orbit. It's the only way to be sure."

After just over one year of treatment, including seven months of IM Bicillin and one month of triple antibiotics--I've only improved a little. My energy level is about the same as when I started treatment. My cognitive/neuro symptoms are a little better. So it's time to break out the big gun.

I'm going to start IV Rocephin (ceftriaxone).

Once I start the IV Rocephin, I'm going to discontinue the IM Bicillin. I will continue taking Biaxin, and I'm switching back to Flagyl from Diflucan. I'll be hitting all three forms of the bacteria, and I'm hitting hard.

This means that I'm going to have a PICC (peripherally inserted central catheter) line installed. It'll run from my arm, through a vein, and empty out just above my heart. I'll be taking 2 grams Rocephin once a day. This may increase to 2 grams twice a day, on a pulsing schedule--four days on, three days off. We'll see how it goes.

An infusion service is going to set up the first month of medication for me. Once a week, a nurse will come to the house to change the dressing on the PICC line. Nick will also learn how to change the dressing, since it's unlikely that our insurance will pay for more than a month of the nursing service (if it'll pay at all). We'll also have to figure out where we'll be getting the medication and supplies if/when the nursing service stops coming by.

My life will be a little more restricted. No getting the insertion site wet. No carrying heavy stuff with that arm. Try not to get sweaty. I'll have to take Actigall as a preventative measure against gall stones (a known side effect of Rocephin), and I'll need monthly blood tests to monitor kidney and liver function.

I don't know when I'll get the PICC put in. My doctor's office has to call the infusion service, who has to call my insurance company. Then I need to call the infusion service, or maybe they'll call me...I'm not sure. Then after the infusion service is set up, I have to schedule the actual PICC insertion. Then I have to tell the infusion service when the PICC will go in, and schedule their first visit for the day after the insertion. And then I actually have the procedure and start taking the IV medication. At least I think that's the order of things.

And we hope that the medication works and I start to get better.

In the meantime, I'm going to have Fry Laboratories do a blood smear test for bartonella. I've done the standard treatment for bartonella, but that doesn't mean we are completely sure it's 100% gone and isn't a factor in my slow recovery.

There are no promises in Lyme treatment. So I'll just see how it goes.

An incident at the garden

I've mentioned before that there are quite a few homeless people who hang out in the community garden where I've got my little veggie plot. Today, I was watering my radishes when a fellow gardener showed up. "You just missed the excitement," he said.

It turns out that he'd just been at the garden when one of the homeless men came up to him and asked for him (the gardener) to call for an ambulance. The gardener told me, "He looked just fine, didn't look like anything was wrong."

The gardener didn't have a cell phone, but he offered to walk with the man to the ER (there's a hospital only a few blocks away. Then when they'd gone about a block, the man sat down on the sidewalk, chest heaving, and said he wasn't going any further. My fellow gardener then went into the Safeway at the corner and an ambulance was called.

At the end of the story, my fellow gardener again mentioned that the guy "looked fine." Sure, he'd been drinking, but that's pretty normal for the crowd that hangs out at the garden. But he didn't look like anything was "wrong with him." To the gardener's credit, he still offered as much help as he was able to give.

And to my shame, I didn't say anything. I wasn't feeling very good myself and wanted to get out of the sun and on my way. Despite my participation in "Invisible Illness Week," I just nodded and moved on to water my lettuce. I kept thinking, "What does a heart attack 'look like'? Or severe pain? Or a blinding migraine?"

Sigh. I wish I'd said something. Even something as small as, "Well, I look pretty healthy, but actually I've got a chronic illness that sometimes leaves me unable to leave the house. It's not always easy to tell when someone is really sick and needs help. So I'm really glad you did all you could for the guy."

I know I can't be an activist at all times for all causes, but still. I wish I'd handled the situation differently.

Two-person job

Being chronically ill is a two-person job. I don't know how those without a supportive partner/caregiver make it; it would be so much harder!

Before I got sick, I was a part-time activist and part-time hausfrau. Which means that I'd take care of the meal planning, shopping, cooking, errand-running, laundry, and most of the cleaning. Nick went to work and made money for us. Then in the evenings and on weekends, we had time to spend with each other, hang out with friends, or to pursue other interests.

Now that I'm sick, I can only accomplish a small fraction of what I used to do. So when Nick gets home, he's cooking dinner, then doing dishes, then giving me a Bicillin shot, then folds the laundry, then then then. On the weekends, he usually finishes up the house cleaning that I can't get to during the week. And when we do get "time off" together, it's not like I'm the most exciting company. Much of the time I'm too drained to do anything remotely interesting.

But this isn't about me. It's a shout-out to the caregivers who make trying to get out of bed a worthwhile effort (even if we don't always quite make it). During an illness, the illness itself and the person who's sick tend to get all the attention. But behind the patient is often a caregiver, and that person can make all the difference.

Sleep and pain

I mentioned a while ago that I was going to ask Dr. M (who prescribes my psych meds) about maybe using Ambien to help with sleep. The last time I brought this up, she didn't think it was a good idea. She still doesn't think it's a good idea.

So we revisited the possibility of using gabapentin. I tried it last December. It worked, then didn't, then I increased the dosage and it was too much and all sorts of crazy.

Anyway. For the last week and a half, I've been taking 300mg gabapentin at night with my clonazapam. At first I took my normal clonazapam dose (0.75mg), and I was seriously knocked out. So a couple of days ago, I experimented with lowering the clonazapam dose to 0.5mg. I don't sleep as deeply, but I think that's because my body is adjusting to the lower dose. (I've been on 0.75mg for quite some time.)

I'm also hoping that I might be able to sleep without Vicodin eventually. I take it in the late evening, a couple of hours before bed. Dr. M isn't thrilled with me being on Vicodin. I don't particularly want to be dependent either, but lesser pain medications are like taking jelly beans. I might as well take nothing.

Today Dr. M asked me if I have body aches during the day as well as during the night. "Well, yeah," I said. My body aches pretty much all of the time. It just varies in location and intensity. So she asked me what I did for the pain during the day.

I shrugged. "I just grit my teeth. It's been here so long that it's almost like background noise. It's the new normal."

She seemed pretty surprised. I guess, in addition to not "looking sick," I also don't really share much of the physical pain. Because the pain sucks, but not as much as the fatigue and the neuro/cognitive symptoms. So I suppose don't get around to mentioning it often. I was surprised that she was surprised.

One lesson I still need to apply to my life is to be more honest with myself and others about how I'm really feeling. I tend to puff up and play the tough girl. The girl with piercings and tattoos, who never cried when she fell off her bike (because she was doing something really stupid) and came home covered in blood. The girl who's carried on with a day of leafleting the Warped Tour, despite an ankle sprain acquired that morning in the parking lot. I'm all, yeah, I'm tough. I can take it. Bring it on, buddy.

And part of that is real--I have a pretty high pain tolerance--and part is a bravado that doesn't always serve my interests. I suppose I don't like to show weakness of any kind, to anyone, nor do I want to be perceived as a whiner. I realize as I'm writing this that my fears are illogical and that dishonesty about my condition doesn't help anyone. I need to work on letting those fears go. It's time to let go with both hands.