A new and improved pain chart!

If you've ever been to the doctor because you're in pain, you have probably been asked to state your pain level on a scale of 1 - 10. The doctor usually says something terribly helpful like "ten is the worst pain you could possibly imagine."

Really? Because my imagination is REALLY PRETTY GOOD. Because of this, I've discovered that I tend to under-report my pain level. I figure that if 10 is something like being flayed in a pot of boiling oil while being burned at the stake while a pear of anguish is slowly opened, well, then my horrible back pain is probably something like a 5. Because I've read about the Spanish Inquisition and watched a lot of horror movies and so I can think of some really sick stuff.

So the pain chart has long been a source of humor in our house. Which is why I am so very pleased to present...

A new and improved pain chart! (Click it! It's funny! And awesome! And awesomely funny!)

I want the author to be my new bestest friend in the whole wide world. Because she is funny and will make me laugh.

All Clear on the Chestern Front

So my chest CT is clear. No problems there. Which is very, very good. I don't want to have to give up my PICC line until it's time to stop the ceftriaxone.

And, yes, I realize that the horribe pun in the blog post title means that I Am Going To Hell.

New medications and the battle for a good night's sleep

I saw Dr. R (my Lyme doctor) today. And since I haven't posted here for a while, I've got a fair amount to report. I'll start with the good news.

The good news: I'm doing better. I know that every time I say this, I end up crashing. But for right now, today, I'm at about 35% energy-wise, 45% neuro-cognitive ability. This is the best I've been since getting sick in November 2007. So it appears that the Rocephin has been doing its job. And my labs are still beautiful, so my body is handling the medication load just fine.

So because I'm doing well, it's time to push a little harder. Of course. So I'm going to be doing 2 grams Rocephin twice daily, four days on and three days off. I'm stopping the Plaquenil today.

In two weeks, after I've adjusted to the Rocephin change, I'm stopping the Diflucan and grapefruit seed extract and going back on Flagyl (500 mg, twice daily, five days on and two days off). The doxy is staying the same (400 mg/day). I'm also going to stay on Cipro (for bartonella) for another 1.5 months. And I'm quitting the monolaurin (taken for EBV and HHV-6).

And the most exciting thing of all? I am trying out private yoga classes. Regular classes are too fast-paced, but the restorative classes are too slow/easy. So I'm working one-on-one to establish poses that I can do (particulary with my PICC line in place) and remind my body what the proper alignment is said poses. I went to my first lesson yesterday, and it was a really good experience.

And now the bad news. Holy morphine, Batman, I hurt like a son of a biscuit. The joint pain has receded and for the moment is only bothering me occasionally. The deep bone pain is annoying but that's about it. The back/neck pain, however, is like to drive me mad. I'm currently taking 20 mg Kadian (extended release morphine) at night, along with 1200 mg gabapentin, and it's barely touching the pain.

So I'm going to go up to 1800 mg gabapentin and see if that helps. If not, I'm going to have to talk to my pain management doctor to see to do next.

The pain is, naturally, interfering with sleep in a major way. At the same time, the trazodone hasn't been helping. I'm making an appointment to talk about what, if anything, I can/should do about it. I've also started acupuncture, and I'm hoping it will help.

Finally, a new symptom has popped up. I've felt very short of breath on and off for a while. Sometimes during activity, sometimes when I'm lying in bed. There appears to be no pattern. So just to be on the safe side, I'm going to have a chest CT tomorrow morning to rule out a possible pulmonary embolism. With the PICC line, there's the chance of small blood clots forming at the tip of the line and breaking off and entering the lungs. This, as you might guess, is not good. Thus, the CT.

There are many possible causes for shortness of breath, including thyroid and adrenal issues (and babesia and the bizarre mess that is Lyme itself). So there are many less severe possibilities than pulmonary embolism. Still, better safe than sorry and all that.

My night is colored headache gray

I'm still wrestling with sleep. My pain management doctor has switched me from hydromorphone to oxycodone at night. I fear that the pain meds are still acting as a stimulant, though.

I've also stopped taking clonazapam due to possible drug interactions. In its place, I've been prescribed a very small dose of trazodone. Trazodone is a tetracyclic antidepressant that is also used to treat insomnia. Because, apparently, drowsiness is a common side effect. I am starting the trazodone tonight.

I very much hope it works, because I'm like the walking dead here. I've been able to get maybe six hours of sleep in the last two days, and I'm exhausted. Amusingly enough, I've just started the new Charlie Huston novel, Sleepless, a nice little post-apocalyptic story about a plague that prevents people from sleeping.

I am aware of the irony. Thank you.

Tamer of cares, to weary toil repose, and from whom sacred solace in affliction flows

Sleep. Such a simple thing. And so horribly fickle.

At night, I can't sleep. I think the hydromorphone is paradoxically acting as a stimulant (Valium did the same thing when I took it a while back), keeping me awake. And the dose I'm taking isn't quite enough to dull the pain, particularly on nights like the last. My wrists, hands, shoulders, hips, and ankles all ached, and a chill current passed through my bones.

I'm now taking 600mg gabapentin at night, but it's also not quite doing the trick.

Adding extra clonazapam doesn't help me fall asleep any faster, though it does result in heavy sedation the following morning.

A typical night/day is as follows. Go to bed at 11:00. Try to sleep. Fail. Eventually get out of bed around 2:00 and fuss around for 30 - 60  minutes. Go back to bed. Finally fall asleep. Alarm goes off at 10:00 AM. Try to get up. Sometimes fail, sometimes make it. Am exhausted and foggy. By 4:00 PM, am fighting to stay awake. Pinching myself. Try to stay busy. Sometimes stay awake. Sometimes simply cannot and fall asleep despite myself. Wake up in one or two hours. Feel like crap. Go to bed at 11:00. Wash, rinse, repeat.

I've tried getting up at 8:00 to make sure I'm REALLY REALLY REALLY tired by 11:00 so I have no choice but to fall asleep. No joy. I think that the medication combination is somehow undermining my efforts. Which poses its own problem. If I stop taking the hydromorphone entirely, or even reduce the dose, it's likely that the pain, which is already highly distracting while on narcotics, will keep me awake. Additional sleep aids (clonazapam as well as other herbal options) might knock me out, getting tossed into the river Lethe without a flotation device isn't exactly what I'm going for either.

Anyway. To summarize. So. Frustrating.

I'm seeing my pain management doctor on Friday, so hopefully he'll sort out the hydromorphone portion. And then I need to see Dr. M to get the clonazapam sorted. And did I mention that Dr. R prescribes the gabapentin? I wish I could get everyone in a room together and have them actually collaborate on One Treatment Plan, with each other's immediate opinions and feedback. I also wish I had a unicorn.

In the Arms of Sleep

Yesterday I had a lymphatic drainage massage, then I saw Rose for a shamanic/Reiki healing session. And then I had the first dose in this round of IV glutathione. During my session with Rose, there was a lot of energetic clearing work that went on. I could tell the story, but it just wouldn't have the same resonance anymore, which I suppose is kind of the point.

In any case, there was all sorts of physical, emotional, mental, spiritual clearing. Sweeping out the cobwebs.

By the time I got into bed, I was ready for sleep. And I got sleep. Good sleep, too. And a lot of it. My alarm went off at 10:00 AM. I turned it off and resolved to get up. Then it was noon. OK, I thought, it's really time to get up. So I get out of bed. At 2:00 PM.

I had a snack, took my meds, and tried to stay awake. By 4:30, I was back in bed and fast asleep. I got up again at 6:30. So when Nick came home from work at 7:00, I'd been awake for a grand total of three hours.

So, I've had two days of little but self-care. Clearly it was needed, and I'm glad I'm starting to listen to my body.

I freaked out very very badly

As you may remember, I had a wee bit of difficulty on Tindamax. After my second attempt to start it, on New Year's Day, I collapsed in a puddle of confused neurotransmitters. I thought that maybe--just maybe--this could be the sign of a very powerful die-off reaction (cysts in the brain and all), but I wasn't sure. Given my physical pain level at the time, I decided to stop the Tindamax again, wait until I saw my pain management doctor to get the pain under control, and then see what my LLMD had to say about my reaction to Tindamax. (I was planning to see both doctors within a week of each other anyway.)

I saw my LLMD on Friday. I told him how I reacted to the Tindamax--which was entirely different than I'd reacted to Flagyl, a similar drug--and he suggested that it's highly likely that Tindamax and I are just not compatible. That my extreme emotional walloping was the result of a nasty drug side effect and not a herx (die-off reaction). So no more Tindamax for me. Done.

Since Tindamax was my cyst-killing agent, we needed to plug that gap in my medication regimen. Plaquenil may or may not kill cysts, depending on whose research you read. So I might be covered there. But we're adding the Diflucan back in (there were signs that yeast might be returning anyway), and I'm also starting grapefruit seed extract, which is supposed to help with cyst-killing.

I also asked Dr. R to prescribe another round of IV glutathione, as it seemed to really help last time. I think that my recent lab work is also testament to the glutathione and other liver support I'm doing. I have the lab results of someone who isn't taking any antibiotics, not those of someone on an extended period of of multiple antibiotics. So that is very, very good.

Since it's been a while, we also checked my vitamin B12, vitamin D, and ferritin (iron storage) levels. My B12 was over 2000, while "normal" is between 211 - 911 pg/mL. So suck it, vegan-haters, all claiming that I can't get my B12. Suck. It.

My vitamin D just barely above the minimum of the normal range. Not terribly shocking, since it's a Seattle winter and I've been avoiding too much sun exposure due to the doxycycline. Still, it's a clue that I might want to make sure I continue to supplement, perhaps even increasing from 1000 IU to 2000 IU daily. It is, after all, a dark and cloudy winter in the Emerald City.

Finally, my ferritin level is right in the middle of the normal range for a woman. And I haven't been supplementing with iron for ages--months or maybe even a year. So, again, suck it, vegan-haters. I get my iron. Suck. It.

Every happy lab result is like a little victory.

P.S. Points to those who get the song reference in my post title. I'm the white rabbit.

P.P.S. I still fondly remember the TKK concert at which I was kicked in the face, resulting in the loss of one of the lenses in my glasses. Luckily, my brother was with me and could drive us home. Ah, memories.

It could all be so simple, but you'd rather make it hard

Hydromorphone. Dilaudid, if you want to get formal. We're figuring out how we feel about each other. What direction is this relationship going? Is this something that's going to work? Because at first, darling D, you just weren't doing enough for me. I did exactly what I was supposed to do, but your 2 mg pill was just not meeting my needs. I'd stay up late into the night, wishing you could do for me what you'd promised.

So we've moved to the 4 mg pill level. I let you get to second base with me in the backseat of the car. I slept too deeply afterward, but that could have been the clonazapam talking. I woke up at 4 AM and you were gone. I ached for you. Literally, darling. My hips, legs, ankles...I was on fire for you, burning a cold electrical passion in the very marrow of my bones!

I got out of bed to look for you, and you were there for me. Another 4 mg and we snuggled back to sleep.

Hydromorphone and the Ugly Sick Pain Face

Last Friday I saw my pain management doctor. The methadone hives had returned by that point, so it was obvious that I had to switch medications. He prescribed 2 mg hydromorphone (common brand name: Dilaudid), after my insurance refused to cover his first choice, oxymorphone, or Opana; Opana, despite being developed around 1914 and introduced to the U.S. in 1959, is still only available as a brand name drug. So it's expensive. Like, ridiculously expensive.

Anyway, now I'm taking hydromorphone. It's not working. At least, it's not working at my current allowed dose. Which is why I'm awake and blogging at 1:00 AM. Tomorrow I'm going to call the pain management doctor and ask what I should do. It's possible that I need a larger dose, or that this medication just isn't right for me.

The joint and bone pain continues unabated. The bone pain isn't surprising, but I'd always been thankful that of all the crap I've got to deal with, at least I don't have the classic Lyme joint pain. It's mostly in my lower body--hips, knees, ankles, and all the tiny little joints in my feet.

The pain is causing me to make my Ugly Sick Pain Face. I grind my teeth and clench my jaw and scowl without realizing it. Until I look in the mirror. And then I'm all, "Damn! Where did that scary, ugly chick come from?"

I've told Nick that if the most severe of my Ugly Sick Pain Face Lines remain after I get well, I am seriously going to consider plastic surgery to smooth out my face just a little. Or else I will forever look like I'm in a very bad mood. And once we're not spending gazillions of dollars on Lyme treatment every month, we'll have the disposable income for a little beauty restoration. Right?

Of course, it's highly likely that the Ugly Sick Pain Face Lines will fade on their own once I'm no longer making the Ugly Sick Pain Face all the time. On my good days, and particularly during my rare good weeks, the lines do fade and I suddenly look my age again.

Flow morphia slow

On Saturday morning, I decided that I had to take a vacation from Sucktown, and I went back on the methadone. Allergies be damned. I couldn't deal with one more sleepless night

Saturday and Sunday night were blissful. I slept. For hours and hours and hours. And then some more. The deep bone pain was gone and I could catch up on all the rest I'd been missing.

Unfortunately, the itching has returned. Still no hives, but it's looking like confirmation that I'm slightly allergic to methadone. But I don't care. I'm going to keep using it until I see my pain management doctor on Friday.

But wait! If I'm all happy and sleeping well and life is roses, why am I blogging at 3:00 AM?

Nightmares. Unrelenting nightmares. After my first hour or so of sleep, I got up and had a tiny bit of chocolate (always good for you). OK. Back to bed. More nightmares. I try to clear the energy in the room. But I keep falling back asleep and into the nightmares.

So I'm blogging, hoping my brain will reboot and I can get some more of that delicious sleep. I plan to spend a little time clearing out my energy field, as well as the bedroom's. Make sure I'm properly grounded and centered before I get back into bed.

Update: Finally got to sleep around 5:00 AM. Slept until 2:45 PM. Was nauseated and dizzy all day. Whee!

Beauty queen

The last week has kind of sucked. No. Correction. It's really sucked. Like black hole levels of suck.

I stopped taking the methadone on Dec. 23. I'd broken out in little bumps which I was pretty sure where hives (they didn't itch), so I was fairly confident that I was mildly allergic to the methadone. It took over a week, but the bumps have disappeared.

Of course, this means that I've been using Vicodin for pain management...during the most painful herx I've experienced. Some nights I'd take a couple Vicodin, a couple gabapentin, and extra clonazapam, then get up in a couple of hours to take more Vicodin, and I still couldn't sleep.

To make matters worse, I (stupidly, I realize now) started my new Tindamax prescription in the middle of this herx. Great idea, right? Start a new drug that's likely to provoke it's own herx while I'm already serving as the interim mayor of Sucktown. I'm a genius. Really.

I don't want to get into the unpleasant details, but I only lasted five or six days before I had to stop and get my head together. I took a week's break, and this morning I re-started the Tindamax.

And now I'm a mess again. I just won the Sucktown County beauty pageant. For the talent competition, I curled up on the sofa and cried into a pillow. (And let me just say? Nailed it!)

In a week I see my pain management doctor again, and hopefully I'll get something that both controls the pain and doesn't provoke an allergic reaction. And then in two weeks I'm seeing my LLMD. Because when you're a beauty queen, your dance card fills right up.