Thirty things about my invisible illness that you may not know

It's Invisible Illness Awareness Week.

So, here's the 30 Things About My Illness That You May Not Know:

1. The illness I live with is: Chronic Lyme/fibromyalgia/chronic fatigue syndrome

 2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2007

4. The biggest adjustment I’ve had to make is: The end of my marriage

5. Most people assume: That I’ll get well eventually.

 6. The hardest part about mornings are: Waking up exhausted. Every day.

 7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: iPod, for audiobooks when I have trouble with reading comprehension

 9. The hardest part about nights are: Sleeping alone after so many years

10. Each day I take 22 pills and vitamins. And I’m not currently treating the Lyme. (No comments, please)

11. Regarding alternative treatments I: Have found some incredibly valuable, and others have been a complete waste.

12. If I had to choose between an invisible illness or visible I would choose: Visible, because then people wouldn’t doubt me.

13. Regarding working and career: At 35 I have to figure out how to live and work and what I’m going to do post-divorce, and I’ve got no clue how to balance my disability with earning money.

14. People would be surprised to know: I no longer regret getting sick.

15. The hardest thing to accept about my new reality has been: Losing my marriage.

16. Something I never thought I could do with my illness that I did was: Go on long-ish hikes again.

17. The commercials about my illness: don’t exist.

18. Something I really miss doing since I was diagnosed is: Not worrying about what surprise symptom the next day will bring.

19. It was really hard to have to give up: The illusion that I was in control of my life.

20. A new hobby I have taken up since my diagnosis is: Photography

21. If I could have one day of feeling normal again I would: Cry, because it would feel like a horrible tease.

22. My illness has taught me: People can surprise the fuck out of you, in both good and bad ways. "Friends" might abandon you, but then other people can amaze you.

23. One thing people say that gets under my skin is: You don’t look like you’re in pain. –OR- You should use natural remedies instead of opiates for your pain. That’s what I would do.

 24. But I love it when people: Encourage me to gently test what I think my limits are, while respecting it when I fail.

25. My favorite motto, scripture, quote that gets me through tough times is: I am much stronger than you think I am.

26. When someone is diagnosed I’d like to tell them: I will listen to you and help where and when I can.

27. Something that has surprised me about living with an illness is: How impossible it is to describe to someone “normal.”

28. The nicest thing someone did for me when I wasn’t feeling well was: Come over to my hotel room with coffee and freshly baked bread to make sure I hadn’t self-harmed.

 29. I’m involved with Invisible Illness Week because: Fuck invisibility.

30. The fact that you read this list makes me feel: Heard.

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Of interest may be my response to the same survey back in 2009, found here.

The Privilege of Health

Someone thanked me yesterday for helping to remind her about a form of privilege that goes unexamined: the privilege that comes with good health. The ability to do what you want, when you want to. Never fearing that you will face rejection or abandonment because of your not-perfect health. Being able to eat without nausea, move without pain, sleep without interruption, and trust that your brain isn't lying to you when it reflects your self-image back at you. The freedom of being believed by doctors, of not being dismissed because you're too young, too female, too hysterical. Of not being told that a stronger person wouldn't have this problem, that your imperfection must be the result of a weak constitution or poor character. The privilege of doing and being without always second-guessing yourself.

Living

I was trying to explain to someone the other day what living with chronic pain is like. How I am never not in pain. And they were all, "What, like now? You're in pain now?" And seemed so surprised, because I seemed OK. I was sitting there, talking, not flinching or moaning. But, yeah, I was in a lot of pain. Because it never goes away. Every second. Every minute. Every hour. Every day. For years. If I'm lucky, it's below a 4 on the 1 - 10 scale. I'm not normally lucky.

Someone joked with me yesterday, "Yeah, I spent the morning thinking I had Lyme, but I just woke up too early."

They didn't mean anything by it. But I wanted to fucking deck them. Lyme is not like missing out on some sleep. It's a monster that's taken away the life I wanted, ruined my marriage, stolen years of my life, left me in pain and depressed, alone and mostly friendless, and medically disabled. I live in fear of the future because I don't know what I'll be able to do when or for how long. Sometimes I question my decision to stay alive. That is my reality. That is living with pain. That is living with chronic illness.

It's been a while...

Yeah, so it's been a while since I last updated this blasted thing. In 2010 I'd hoped that by 2012, I'd be writing about how I'd kicked Lyme's ass and was a super ninja warrior. Or something.

But I'm not. Since my last post, the Rocephin and/or my family history of gall stones led to the removal of my gall bladder. In May of 2010, I was probably the best I'd been since this whole thing started. I was up to maybe 45% of "normal" energy on a good day. Cognition was good. But then there was surgery and I stopped Rocephin for a few months. And when I went back on the Rocephin, it just didn't work anymore. Eventually I had the PICC removed.

And slowly, very slowly, I started to slide backward. I've tried a number of treatments--drugs, herbs, detoxing--and in June of this year my doc suggested that I could try IV doxycycline. Which is more complicated than IV Rocephin and looks to be fairly expensive. It'd also be difficult for me to do in the summer, since doxy makes me very sensitive to the sun (and I already burn very easily).

At that point, I was pulse dosing my antibiotics--two weeks on, two weeks off. I felt so much better on the "off" weeks. Probably because I wasn't dealing with side effects plus die off. Still, I just got to a point where I couldn't do the drugs anymore. I needed a break. So I'm on a drug holiday, and not the fun kind in Amsterdam. I've been off antibiotics since June.

June and July were pretty great. I spent July in Oklahoma with family and friends, and despite the raging heat, I felt pretty good. Just being there, in the company of a dear friend, in contact with the land that has been my family's home for over a hundred years, land that is twisted into my DNA, land that I am connected to on a very primal level, well, all this was good. It was healing in itself. It fed my soul, which has kind of been wasting away.

Now it's September. In a few days I turn 34. In a couple of months, I'll mark the five-year anniversary of this illness. Physically, I'm not doing well. I'm back down at around 20%. Cognition has slipped a bit, but I'm still at 75%, which isn't terrible. I'm in a lot of pain. Emotionally and spiritually, I'm kind of falling apart.

I need to figure out what to do next. I can always just wait and decide later. I can go ahead with another drug or another treatment plan altogether. Or I can just stop and make peace with the idea that this is it. That this is my life now and for as long a future as I can picture. And then, with that acceptance, go ahead and figure out what I can and can't do, where my limits are, and try to make a life here, in this moment, without all the striving and struggling and drugs and side effects. I know it kind of sounds like quitting, but at some point the treatment is more damaging than the disease.

And I don't know where my life is headed. I won't go into specifics, not on the Internet, where anyone can read this. But I will just say that might lose or maybe am losing or have already lost the structure and security and...crap, a lot of shit that I've built my life around. And I'm older and lonely and so fucking tired. I feel like there's little I can rely on, and my future is a big blank dark space.

So there's the update. No awesome progress report. No happy ending.

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.

Small changes

I'm still feeling rather poorly, but I think I'm slowly coming out of the latest herx. The body pain has gradually faded, which is good because I'd been taking an increased dose of methadone and I'd rather not do that any longer than necessary.

The strangest symptom, though, has tormented me on and off for over a week. Nausea. Sudden, intense bouts of nausea. Can't wait for that to go away, I tell you!

Anyway, I saw my LLMD last Friday, and the only change we're making to my medication regime is that I'm discontinuing the Diflucan and starting Tindamax for the cyst form of Lyme. I'm pulsing the drug--two weeks on, two weeks off. I started taking it on Sunday and haven't noticed any terrible side effects, which is nice.

Jinx!

Yeah, I jinxed it again. I said that I was feeling better, and now I'm crashing again. Seriously, this little dance is getting old.

The Lyme cycle means that when the bacteria try to reproduce and get killed, I experience the die-off reaction (herx) and feel like crap. Then the herx fades and I start to feel better. And in the case of the last two jinxes, I think I'm making continued improvement due to the Rocephin. And so I start to think, "Hey, this is great! I'm feeling better! Woo hoo!" And then I write about it because I'm at the top of the roller coaster and everything looks wonderful...and then I crest the hill and the herx hits me and whoosh I'm falling back down.

The goal is to make the good times better and the bad times less severe and/or prolonged. I still think that's happening. However, that doesn't mean that the bad times are any fun.

Over the past week, I've seen my cognitive function decline. I can't concentrate as well, and I have started making more speech and writing mistakes. (I just typed "speach" and had to correct it.) I forget things more easily. Sometimes I forget to take a round of medication, which is not good.

The body pain is also increased. The new methadone prescription isn't keeping up with it right now. My hips ache to the point that standing, sitting, and lying down are all painful. Walking hurts. My back hurts. My fingers hurt.

And I'm tired. I'd finally gotten used to getting up early-ish, but now I'm back to sleeping 12 - 14 hours a night. Which isn't any fun, because I keep waking up due to the pain.

But I know that this is temporary. It's clearly a herx, and I've just got to take care of myself and allow my body the space and time it needs to get through this. I've got extra energetic support in place. I'm getting a massage tomorrow. And I'm spending extra time in my jammies, resting and cuddling the cats. It's all a part of healing.

Christmas giving

I know I say something like this every year, but it bears repeating this year too.

As of Thanksgiving, I've been sick for a full two years. Two years of debilitating symptoms. Two years of putting life on hold. And, what hurts the most, two years of not being able to get out and volunteer for Vegan Outreach. Two years without leafleting college campuses, concerts, and festivals. I miss this joyful work. A lot.

This is where I ask you to help me. Instead of any Christmas present, I'm hoping that you'll donate in my honor to Vegan Outreach. You will be giving me the gift of activism, in addition to helping educate the public about compassionate choices we can make for animals.

And just to sweeten the deal, throughout the month of December, there is a $70,000 matching donation challenge. So whatever you give will be automatically DOUBLED through a matching donation! It's like you're getting a buy-one-get-one-free donation/present for me!

I'm telling you, if you do this, I'll think you're the bee's knees and the cat's pajamas all rolled into one beautiful package.

Knock on wood

The last time I posted to say, "I think I might be feeling better," I totally jinxed it and a few days later ended up much worse. So I might be tempting fate here. But...

I think I might be feeling better. Previously I was typically functioning at 20% of normal. I think I'd rate my last week at 25 - 30%. I've been up this high before (never thought I'd think 30% of normal was "good"), and then I crashed. The hope is that someday I climb higher and don't crash, or at least don't crash as hard. And then climb back up.

Of course, 30% is still very limited, and I've learned not to push myself when I am feeling better. But maybe maybe maybe the new combination of medications is fighting off the Lyme and bartonella. And the methadone has, so far, been helpful for the pain. And I'm currently doing two infusions of IV glutathione each week, so I'm keeping my liver and detox functioning happy. And of course the Reiki and other energetic healing has proven invaluable.

Keep your fingers crossed for me.

Just One Fix

Today I saw a pain management specialist. My LLMD recommended him if I felt I needed something stronger than the Vicodin that had originally been prescribed. I have two categories of pain. The first is this horrible upper back pain that I've had for well over ten years. It's gotten a lot worse since I've been sick. It's with me every minute, every hour, every day.

The second kind of pain is this shooting/hot/cold/electric pain in my bones and sometimes joints. This comes and goes, and is most likely directly the result of Lyme and/or herxing from the antibiotics.

The pain management doctor prescribed methadone. I got the fanciest prescription slip I've ever seen (so many security features!), and I had to sign a long document promising that I wasn't going to sell my drugs on the street or use them more frequently than prescribed, etc. Basically, be good.

I've dropped off the script at Walgreens, and I can't wait to pick it up tonight. At this point, the Vicodin dulls the pain a little, but it never goes away (the back pain, that is; the other pain comes and goes). So I'm happy to stop the Vicodin and see how the other drug treats me. The idea of a pain-free night makes me swoon. I am also supposed to continue with the gabapentin.

But I haven't gotten to the most exciting part of the appointment. I've seen numerous doctors over the last dozen or so years for the upper back pain. Responses have varied from "it's probably an ergonomic issue--change your work space" (didn't help) to "try physical therapy" (didn't help) to just nothing more than a shrug. I understand that it's natural to doubt a 21-year-old complaining of intense back pain, but still. Really.

Anyway, the doctor today pressed on a spot on my neck and asked if I could feel the sensation in my shoulder blade area. Why, yes, I could. He said that I probably had a pinched nerve in my spinal column, and if so, it could probably be fixed with minimally invasive surgery.

I nearly fell out of my chair. Fixed? You mean this could just go away?!

Obviously, I'll want to look into the issue and so my research. And then I'd need an MRI to determine if there really is a pinched nerve there.And then I'd need to choose a doctor for surgery and so forth. So I'm not acting on anything immediately, but it's just so exciting that there might be a clear and discernable cause for the problem.

If I make it through December...

Thanksgiving has come and gone. I've officially been sick for over two years now. It's dark, even in the daytime. I'm tired and I ache and I have so so so many pills to take, not to mention the daily IV infusions.

Every year I think that if I can just make it through December...

Doxy, ceftriaxone, plaquenil

I've been taking my entire daily dose of doxycycline (400 mg) at once, in the morning, with breakfast. And it's going pretty good so far! Yesterday I didn't have enough to eat, and I was pretty nauseated for a little while, but it passed.

And I'm not getting the weird side effects from the ceftriaxone in the evening. So perhaps it was just the doxy + ceftriaxone at the same time that was giving me grief.

Finally, I'm still waiting to hear back from my LLMD regarding my questions about Plaquenil.

Experimentation and confusion

Just a few items of note on this very rainy Monday.

1) After stopping all antibiotics for three days to re-boot my system, I re-started the IV ceftriaxone (made by Wockhardt). None of the previously bothersome symptoms appeared. Huh. So perhaps I do not need to switch to the more expensive Sandoz-made ceftriaxone.

2) This morning I re-started doxycycline. I tried taking all 400 mg in one dose. I'd previously feared that this would lead to extreme nausea and vomiting. However, apart from some very mild stomach discomfort (which could be attributed to my breakfast of strong coffee), I was fine. Perhaps the sucralfate is helping? Or perhaps I'm just a morning doxy person? Weird.

3) I just found out that new research indicates that Plaquenil does not kill the cyst form of the Lyme bacteria. Indeed, when introduced it can actually encourage the bacteria to seek protection in the cystic form. I'll need to talk to my doctor to find out if I should stay on the Flagyl or maybe switch to Tindamax or some other anti-cyst antibiotic, as well as if I should take the Plaquenil at all.

Unfortunately, I don't know much about this new research beyond what I just wrote. I'm hoping to find out more in the next few days.

Report from LLMD visit

I haven't updated much in the last week or two, mostly because I was trying to figure out what the heck was going on with my meds. On October 30, I started doxycycline and switched from one generic brand of ceftriaxone (Rocephin) to another generic brand. Two variables! Pesky.

Headache, nausea, chest pain, stomach pain, vomiting, tight throat, excessive saliva production. It was a regular laugh riot.

So I tried eliminating one of the two suspects for a couple of days to figure out which might be causing my troubles. Unfortunately, my experiments did not produce reliable, repeatable data. Sometimes I'd still feel horrible. Sometimes I'd be just fine. No rhyme or reason.

This was the riddle I presented to my LLMD today. We have a proposed solution. First, I'm going to switch from the new generic ceftriaxone (made by Wockhardt) to the generic ceftriaxone I'd been using previously (made by Sandoz). It's possible that a binder or filler in the powder is giving me grief. I won't get the Sandoz-made kind until next week, and it's going to cost nearly twice as much.

As for the doxycycline, we're looking at a multiphase approach. First, I'm going to start taking sucralfate to protect my stomach and esophagus. One 1 gram pill, four times a day. Fun. But one of it's most common side effects is bezoar formation. And that's just funny.

Then I'm going to try taking all 400 mg of doxy at one time, in the morning. (The doxy never bothered me in the morning, only if I took it after, say, 4 PM.) If this works, great.

It probably won't work. Because 400 mg of oral doxy is a lot at once, and will likely cause vomiting. Still, I'm going to try it. And if it doesn't work, then I'll go back to 200 mg in the morning and 200 mg in the evening. And we'll see if that works. Hopefully the sucralfate will do it's thing and all my troubles will vanish. Ha. Ha. Ha.

The final medication change I'm making is that I'm going to say good-bye to my longtime friend Flagyl. We had some good times, but it's just been a while and I think it's time to move on. It's not you, Flagyl. It's me. I'm sorry. It's been eleven months, and I think I need something new and fresh in my life. The Lyme bacteria aren't afraid of you anymore. (Read: Resistance to Flagyl might be building and it's time to switch to a different drug.)

I'm going to start Plaquenil, 200 mg, twice a day. It acts against the cyst form of Lyme. Additionally, it can lower cellular acid levels, which makes doxycycline more effective. Score! And one of it's

The downside is that it can cause retinitis, so I'll have to get an eye exam every four months to make sure I'm all good. Similarly, I get monthly blood work done to make sure that my body is handling the other drugs OK. This month my labs were simply beautiful. Not a number out of place.

I'm ready for my close up

New hair. New piercings. Fun!

Re: Jinxing

To answer last Thursday's question:

Yes.

To be fair, I just started doxycycline on Friday, and am clearly sinking into Herx Mode. Blah.

My mood is unstable, fatigue is crushing, and I'm having olfactory hallucinations again. Usually my olfactory hallunations are of cigarette smoke. But today? Pot roast. It totally smells like someone is cooking pot roast. And I can pretty much guarantee that no one in this house is smoking cigarettes or cooking meat.

Overhead in my house

Or, things I never thought I'd say...

"That's a good kitty. Go play with the syringe cap."

(By the way, did you know that the little plastic syringe cap makes a great cat toy? Seriously. Best cat toy EVER.)

Will I jinx it?

If I overlook today, which was fairly crap, I think, maybe, just possibly, I'm feeling a teensy weensy bit better. Just writing this terrifies me. I don't want to jinx it! Nor do I want to have to retract my words in a couple of days.

But the initial reaction/herx to the IV Rocephin is fading. I'm now getting something like 10 or 11 hours of sleep instead of 15+. I've added the Cipro with no ill effects. Maybe I'm turning a corner?

I won't get too exited just yet. I'm going to start doxycycline in a couple of days (having discontinued the minocycline), and that might trigger another herx. I'm also going to start a few rounds of IV glutathione, which provides liver support and helps some of the toxins produced by the Lyme bacteria. Unfortunately, my previous experience with IV glutathione resulted in feeling worse for a couple of weeks, then just normal-bad, and only after four or six weeks did I start to feel "better." It was shortly after that that I had the best couple of weeks I've had since getting sick two years ago.

And then we added new medicine and I crashed again. Still. It's progress. Get built up, get knocked down. Get built back up, get knocked down again. It's how the game is played.

But sometimes there are little victories that represent real progress, like when I regained the ability to read. So I'm hoping that I'm about to achieve a little victory.

In denial

Today I got the expected letter from my insurance company, denying treatment with Rocephin beyond the initial 30-day period. I knew this was going to happen, and I've lined up a supply of the drug and accompanying supplies. While still expensive ($500 - 600/month), it's way cheaper than continuing with the infusion service I began treatment with.

My insurance company explains the denial of coverage as follows: "The clinical rationale is that the length of therapy requested exceeds the recommended duration of treatment for any manifestation of Lyme disease based upon Infectious Disease Society of America (IDSA) guidelines."

If you haven't read about the Connecticut attorney general's investigation into the IDSA, this is worth reading. The doctors who set the guidelines that my insurance company uses to deny my coverage, they also can get paid by insurance companies to consult on cases like mine so that the insurance company deny coverage and save money. Conflict of interest, no?

The IDSA claims they will revisit their guidelines (the review hearing has already taken place) and announce any changes by the end of the year. I don't expect anything to change. They've got an interest in maintaining the status quo. And, frankly, I don't hold much faith in any organization who could say the following: "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection." [Emphasis mine.]

Yep, they're saying that any symptoms that remain after a month of treatment are clearly something other than the original infection. (Which is like saying that if your sinus infection doesn't go away after 30 days, then you don't have a sinus infection. You've got something else. Or maybe just the aches and pains of daily living.)

Somehow I doubt that memory loss and severe cognitive impairment in a 31-year-old woman is related to the "aches and pains of daily living." But then again, I'm probably just making it all up. Or I'm crazy. Or something. Sigh.

Lost

Today I went to Safeway. I was feeling really awful, so I drove, even though it's less than ten blocks away. Even though it's sunny and beautiful right now in Seattle, and the rain is coming back later today so this is my only chance to be in the sun for, like, ages.

Yeah, so I drove ten blocks. That's pretty bad, right?

Worse, though? I got lost on the way home.

At least this time I remembered to wear pants.

Nothing is ever easy

A couple of updates on my last post.

1) It seems there is some disagreement about the reliability of the Fry Lab blood smear for bartonella. I'll need to look into this more.

2) The minocycline is causing me to wobble and slide around like a drunken ferret. Turns out that women are much more likely to experience vestibular disturbances while taking minocycline. In one study, 70% of female volunteers reported vestibular disturbances, compared to 9% of women taking the placebo. Yikes!

Tomorrow I'll call my LLMD and see what I should do. I imagine I'll be switched to doxycycline.

The Scorecard

A friend of mine recently commented that it sounds like I'm increasing the intensity of my treatment, but I just keep feeling worse. He asked for a more nuanced report, a scorecard for what's improving and what's not. I'd been meaning to do just that for some time, so here we go. I also saw my LLMD yesterday, so I have test results and new meds to discuss.

Before I begin, I want to note that it's really difficult to tell what's causing what. I've got a few infectious diseases, each with their own set of complex symptoms. Often these diseases can cause hormonal dysfunction and other self-reinforcing problems in the body. And I'm on a ton of medications and supplements, which have their own side effects. So it's not easy to pinpoint the cause of any one individual symptom.

Part 1: The Diseases

Anyway, moving on to neuroborreliosis, or neurologic Lyme disease. (Neuroborreliosis sounds much more impressive, no?) This is a nasty infection. The bacteria are, we think, primarily concentrated in my central nervous system. I have bugs in my brain.

The bacteria that causes Lyme, Borrelia burgdorferi, or Bb, is an amazingly complex little bugger. It's a spirochete, a corkscrew-shaped bacteria. However, it has the ability to penetrate cell walls and hang out inside your cells. This is the intracellular form. And if that weren't enough, it can also transform into a protected cyst. So if you have one antibiotic that starts to kill the spirochete, it's all, like, "Oh noes! Let's go hide!" And the bacteria go intracellular or morph into cysts. Then say you add an antibiotic that can kill the intracellular form. "Oh noes! This sux!" say the bacteria, and they all curl up in to cysts. So you have to add another antibiotic that can kill the cyst form.

I am currently taking IV Rocephin to kill spirochetes, plus oral minocycline for intracellular Bb and oral metranidizole (Flagyl) for the cyst form.

Great! I'm killing bacteria! But wait! Kind of like a vengeful ex-lover who takes a razor to your couch cushions before moving out, as the bacteria die they release toxins. Also, your immune system detects the dead bacteria in your blood and is all, "OMG! What are you?! Time for immune reaction!!! Cytokine attack!" And then you feel even worse than you did before you started killing bacteria. This what I'm talking about when I say I'm having a herx or "die-off" reaction. ("Herx" is short for Herxheimer reaction.)

But wait, you say, how can I tell if the reaction is a herx, side effects from the drugs, or just a symptom flare? This is a major frustration. It can be difficult to discern if you're feeling horrible because you're making progress, or if you're just feeling horrible because you're sick--or some combination of both! Because I don't have enough ironic absurdity in my life.

Bartonella. Hey, remember back in the spring when I said that I was done treating bartonella? Because after trying out Rifampin and Bactrim, I finally did a three-month course of Levaquin, which is generally accepted to be the best way to kill bartonella? Well, given my slow improvement in symptoms I'd attributed to Lyme, my LLMD suggested that we do a blood smear test at Fry Laboratories, just to make sure that the bartonella was gone. Dead, buried, not making a sequel.

Perhaps my bartonella infection drew inspiration from Friday the 13th Parts II - X, because we're coming back for the sequel! The supposedly dead killer comes back for one final scare! (Little Scream reference, since Halloween is coming up.)

The blood smear showed (what we are pretty sure is) happy little bartonella bacteria in my blood. Levaquin = FAIL. So now we're moving on to Cipro. I really hope it does the trick, because I don't want to wait around to fight cyborg bartonella in space. (Surely I'm not the only person who saw Jason X? Right?)

Enough horror movie jokes. Moving on to the viruses. I know that I have elevated Epstein-Barr Virus (EBV) and HHV-6 titers. This is common in people with Lyme (and chronic fatigue syndrome). Most people are walking around with these viruses, happily coexisting. However, my immune system is too weak to keep them in check.

Once the Lyme and bartonella are beaten down, the hope is that my immune system will be able to fight off the viruses. However, because my treatment has been bogged down and slow (by my standards), I'm also taking an herbal antiviral called monolaurin. (There are prescription anti-virals, but they are really expensive and there's no way my insurance company would approve them.)

Part 2: The Symptoms

I should probably divide my symptoms into two groups: major and minor. Major symptoms are the ones that I really hate and the minor ones are just annoying. This doesn't mean that the minor symptoms are less severe than the major ones. It just means that I, personally, can tolerate them better. For example, cognitive deficits bother me much more than physical pain. Even fairly severe pain is less intolerable to me than my milder cognitive issues.

I should also note that not all of these symptoms are with me every day. There are good days and bad days, and I can never predict what's going to come up on the Wheel of Symptoms. It's like a grab bag at a fundraiser a primary school in Hell.

Major symptoms

Fatigue. Crushing fatigue. In the early days of my illness, I went from someone who could easily go on 15-mile day hikes to someone who had difficulty walking around the block. If 100% represents my energy level pre-Lyme, then I'd say that I'm generally running at around 20%. Some days it goes down to 5 - 10%. During the highest point of my treatment, I got up to 30 - 35% of normal. At which point, I was doing well enough to add in more drugs, which knocked me back down. (See herxing, above.)

Short-term memory loss. I forget things. I'll ask someone a question, then ask it again in three minutes. This has gotten a little better with treatment. I don't get lost in the grocery store (much) anymore.

Word-finding difficulty and grammar problems. You can't tell this from my blog, because when I'm blogging I can edit. I use spellcheck. So you don't see all the mistakes. But I often forget basic words. Like "washing machine" or "car." I conjugate verbs incorrectly. When I write, my spelling is terrible. I mix up simple things like their/there/they're, plane/plain, break/brake. Considering that I'm an English major from a highly regarded college and I used to be a professional copyeditor, this is significant.

Concentration and complex (and not-so-complex) thought. It's really hard to concentrate on anything for more than a few minutes. After that, the information starts to swirl and blur and I can't keep it all in my head. Making complex decisions is right out. Simple decisions can also be a problem. Nick will ask, "Do you want your blue shirt or your red one?" And it's like he's asked me to explain string theory in five words or less. I just don't know the answer.

Reading. Reading is still difficult for me. However, one year ago it was nearly impossible. I'd stare at the words on the page, but they just wouldn't connect into meaningful sentences and paragraphs. I could digest maybe a page at a time. This has been where I've seen my biggest improvement. I can read books now! Sure, they're silly mystery novels (and sometimes even that is challenging), but they're whole books. I've even managed to read one or two short-but-complicated medical articles. Progress!!!

Brain fog. The name is pretty descriptive. Foggy, slow thinking. Kind of like how your brain slows down when you have the flu and everything kind of seems like it's underwater.

Sensory overload. This is one of the hardest things to explain, but I'll try. Processing sensory input--sight, smell, sound, touch, etc.--can be overwhelming. On bad days, even bright sunshine can be too much. On normal days, I know to limit the amount of sensory input in a given time period. For example, going to see a movie can be a challenge if there's always a lot of action or important fine details on the screen. By the time my brain has figured out what I'm seeing, the movie has already gone on to the next thing I need to process. It's exhausting at times.

Another example: Too rich a sensory experience can be, to some extent, painful. Nick and I have spent time hiking in the Canyonlands National Park in Utah. Awe-inspiring beauty, right? But I can't look at the pictures we took while we were there. There's just too much detail, too much to process, when I look at the pictures. Trying to take it all in makes my brain hurt.

Just feeling sick. You know that feeling when you're coming down with a cold? Like your head is full of cotton balls and your body creaks and doesn't feel like it's yours anymore? When you're not sick enough to stay home from work but give it serious consideration? That's how I feel at least 75% of the time.

Minor symptoms

Pain. Muscle aches. Occasional neuropathic pain and joint pain. It can be bad enough to prevent sleep, even with Vicodin and gabapentin on board.

Body temperature regulation. I swing between hot and cold. I am comfortable in a narrow range of temperatures.

Sleep. Sometimes I sleep for 18 hours. Sometimes I can't sleep at all.

Poor motor coordination. If you thought I was clumsy before I got sick, well, just don't let me hold anything valuable. And there are days when I know that I would be unsafe behind the wheel of my car.

Painful lymph nodes. Persistent for the first eight months or so of illness. Now mostly gone.

Night sweats. Again, this is a symptom which has largely gone away. A year ago I'd wake up with soaking wet pajamas and sheets, drenched in sweat, and freezing cold. It'd happen at least five days out of the week. Now it happens maybe every two weeks, and the intensity is much less.

Vision changes. This was a problem for about three months in the beginning of 2009. It seemed like my vision was just a little different every day. It's stabilized for now.

Forgetting how to do simple tasks. This hasn't happened very often, or else it'd be listed alongside the major symptoms. Examples include: forgetting how to climb stairs, forgetting how to pour sugar into my coffee mug. This has also decreased in frequency since treatment.

Conclusion

Progress has been made. It doesn't always look like a lot, because there's still a very long way to go. And I write about the symptoms I still have, not the ones that have gone away, because there the ones that are still bothering me.

Going into treatment, I knew that it was supposed to get worse before it gets better. That's certainly true. Once I start to feel a little better, that's a signal that I can tolerate getting kicked down again by a new medication and a new round of herxing. Now I've gone through enough ups and downs that I'm on drugs to target all three forms of the bacteria, plus another drug to target the bartonella.

And the next time I see my doctor, I'm going to press for increasing my Rocephin dose and possibly switching from some oral antibiotics to more IV antibiotics, assuming that the IV form allows better penetration of the drug. And that'll probably kick me down, and then I'll get back up. I'm taking a variety of supplements to help my body eliminate the die-off toxins and to deal with cytokine production. So hopefully each herx will be less severe than the last. But if not, I'll press on anyway. The best way out is always through. / And I agree to that, or in so far / As that I can see no way out but through.

Phone calls from the Easter Bunny

So I got the most surprising phone call. I mean, it was like having the Easter Bunny or the Lucky Charms leprechaun or the Tooth Fairy ringing me up to chat.

I got a call from (pause for suspense) the Chronic Fatigue Syndrome Clinic at Harborview Medical.

Really, hearing from the Tooth Fairy would have surprised me less. Because, you know, I figured there's a slim chance that the Tooth Fairy might actually exist. Whereas I was certain that the CFS clinic was a myth handed down from doctor to doctor, perhaps embellished in stories over campfires at Doctor Camp or whatever.

Because, you know, I only sent all the paperwork and patient information to them in May 2008. You know, only seventeen months ago.

Of course, the CFS clinic doesn't actually treat CFS. They just tell you to exercise and send you to therapy so you feel better about being sick for the rest of your life. So no big loss on my part.

In any case, I was very polite to the woman on the phone. I said that I had found a doctor with whom I was working, and they could remove me from their waiting list.

Then I called Nick and we made very rude jokes about the clinic for about five minutes.

Outsourcing

Recently Nick and I have again come to the point where something's gotta give. I'm sick, he's sick, there's no time to take care of ourselves much less anything else. So we started thinking about what we could outsource to someone else.

After some discussion, we decided to try Lucky Palate, a vegetarian (in our case, vegan) meal delivery service. We signed up for six dinners a week for one month. This saves us not only the cooking and post-cooking clean up time, but also the effort of meal planning and a lot of grocery shopping. And by having food pre-made for us, we can be certain that it's healthy and I won't end up eating more raisin bran for dinner because I'm sick and don't want to do anything. I'm not terribly happy about it, but I think it's a good option to try right now.

I love cooking and trying out new recipes. I read cookbooks for fun. I blog about homemade vegan ice cream. But I've been too tired to cook for months. Nick's taken that over. And planning out our meals can be very difficult on a bad neuro/cognitive day. So this is a limitation I will accept for now, and we'll see what accommodation can be made. I hope the Lucky Palate meals are good; they look kind of hippie/stodgy, but that's not always a bad thing.

A simple question of ethics

I was astounded to see this article in the New York Times Magazine this weekend. (It's fantastic. You should go read the whole thing. Right now. I'll wait. Done? Good.) While the author is not my secret robot clone who snuck into my house and stole this article in its entirety from my computer, I got a chill reading a few paragraphs. While the phrasing may be slightly different, I swear I've tried to make these same simple assertions before.

A vegetarian diet can be rich and fully enjoyable, but I couldn’t honestly argue, as many vegetarians try to, that it is as rich as a diet that includes meat. (Those who eat chimpanzee look at the Western diet as sadly deficient of a great pleasure.) I love calamari, I love roasted chicken, I love a good steak. But I don’t love them without limit.

This isn’t animal experimentation, where you can imagine some proportionate good at the other end of the suffering. [Naturally, this is a point on which the author and I would disagree.] This is what we feel like eating. Yet taste, the crudest of our senses, has been exempted from the ethical rules that govern our other senses. Why? Why doesn’t a horny person have as strong a claim to raping an animal as a hungry one does to confining, killing and eating it? It’s easy to dismiss that question but hard to respond to it. Try to imagine any end other than taste for which it would be justifiable to do what we do to farmed animals. [Emphasis mine.]

I am typically accused of being "emotional" rather than "logical" when I point out that "because it tastes good" isn't a moral justification for behavior. And yet we all acknowledge that "because it feels good" is not an appropriate defense for assault, rape, consumption of child pornography, or stealing a cancer patient's pain meds to get high.

I probably love the taste of meat more than anyone else I know. I salivate when a Pizza Hut commercial comes on. Seriously. I do. I could spend hours fantasizing about a pepperoni pizza with a side of bacon covered in fried chicken skin. Oh. My. God. That sounds delicious. But my temporary sensory pleasure simply cannot justify the cost borne by another being. I don't think that I'm being emotional. On one hand I have "it tastes good" and on the other hand I have a industry of oppression and animals' lives and deaths of misery and terror.

In the last two years I've learned a lot more about suffering than I ever really wanted to. Chronic illness will do that to you. On the worst days, when I couldn't get out of bed, when I was afraid that I'd never be able to read again, when I thought that maybe all the neurological damage was permanent, when I thought that there was no hope and no cure and no way to ever live a productive life again...on those days I wondered if death would be the preferred option.

And yet, I know that my suffering is transitory. I have doctors and medications and people who care about me. The suffering of animals raised for food is broken only by the release of death. I have enough pain in my life. I have no desire to condemn others to hopelessness and despair. Not even if it tastes good.

What's Lyme disease like?

I get this question from a lot of people. In part because the symptoms are so varied from person to person, depending on length of illness, treatment, etc.

I think the easiest way to explain what having chronic Lyme is like is this: It's unpleasantly like being drunk.

What's so unpleasant about being drunk?

Ask a glass of water.


(Bonus points to readers who get the reference in the above post.)

Blah blah blah

OK, ready? 'Cuz I'm gonna complain for a little while. With me? Good.

Grievance 1: The arm covers I bought shrank just enough that they're not really comfortable.

Grievance 2: I was awake until 5:30 in the morning yesterday (today, I guess) due to a variety of symptoms. Pain, discomfort, blood pressure issues. And to cap it all off, vomiting.

Grievance 3: I am so horribly tired. Wiped out. Exhausted. If Nick weren't feeding me, I doubt I'd have the energy to actually eat.

Grievance 4: The nurse who was supposed to change my dressing on Mr. Pickles said she'd be here between 5:30 and 7:00 tonight. At 7:30 we call her and discover that she's many miles away and will have to come tomorrow.

Grievance 5: My insurance will only cover 30 days of IV antibiotics. After that, we're paying for it completely. And this stuff isn't cheap.

Grievance 6: Above-mentioned insurance company is now being a jerk about covering Nick's prescription for Tindamax. So we are ordering from Canada, because in the U.S., a 30-day supply is over $400.

Grievance 7: My skin is so dry that it's starting to hurt. My hair is also dry and frizzy. Just another fun part of antibiotic therapy.

Grievance 8: I have chronic Lyme disease. That pretty much sums it up.

The fashionable Mr. Pickles

My camera was having problems, so forgive the moderate quality of the following photos.

Here is Mr. Pickles:

Mr. Pickles likes to dress up. But white mesh is not his favorite:

 

Mr. Pickles says, "BOOOOO! Boring!"

But today I got my package from Hijab Al-Muminat! So it was time to play dress-up!

These arm covers work perfectly! I prefer the longer style, but they were only available in lemon yellow (see above) and kiwi green. The rest of the sleeves I ordered (red, fuchsia, brown, and beige) are a bit shorter. If I pull them all the way up to cover the PICC line, then they end about 3/4 of the way down my arm.

I hope they hold up to lots of wash and wear, because I could really see keeping these even when I don't have a PICC. It's a great way to convert short sleeves into long without having to wear a full undershirt.

Slowly, slowly

It turns out that my immediate side effects from the Rocephin (dizziness, slurred speech) are not normal or just part of a die off reaction. My doctor suggested pushing the medication more slowly.

Tonight I infused the drug over a twenty-minute period, instead of over about eight minutes. It was much easier. Just a little dizziness, no slurring of words, no muscle twitches. I think I might stretch it out to a thirty-minute period. In the end, it saves me time because I was pretty much incapacitated for at least 30 - 45 minutes after the eight-minute infusion.

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.