Happy birthday to my wonderful husband!

Today is my husband's birthday! To celebrate, we're having a party on Friday night. If you're reading this and you will be in Seattle, you're invited. We'll have cupcakes, booze (but none for me, due to my meds), non-alcoholic drinks, snacks, board games, and all sorts of crazy fun.

I surprised Nick with his present last week. I hadn't meant to, but when I got his present home, I realized that there was absolutely no way I could hide it. See, I got him an HDTV. A 42" HDTV. He's been wanting to upgrade to an HDTV for ages, but it's not something he'd ever get for himself. Particularly since so much of our income is currently devoted to fighting my illness.

Well, I'm a bit of a sneak, and I've been squirreling money away for a while now. And since the economy is in the tank, you can get really good deals on HDTVs. (I was able to get $400 off the standard price.) And, frankly, Nick deserves something good. He works all day, then has to come home and take care of all of the things I used to be able to do (cooking, laundry, blah blah blah). He's got so little free time to enjoy himself, and I'm pretty boring since I usually don't feel good enough to go out and be social. And I figure if all we do together is sit around at home and watch DVDs, well, at least we can do it on a really cool TV.

Anyway, so I get this huge box home and realize that there's NO WAY I can hide this thing. (I had to get my neighbor to help me carry it in from the car.) So I wrapped it (the best I could, since it took two rolls of wrapping paper) and left it sitting in the middle of the floor. Needless to say, Nick was very surprised and very happy. He's been playing with his new toy since.

It makes me do a little happy dance.

More from the wacky world of health insurance

My insurance company denied my doctor's request to have Levaquin approved for more than 10 days at a time. (Back story: When I called the insurance company, they said it would be a simple matter of getting the doctor to state that I'd be on the drug for more than 10 days, and then they would grant approval, no problem! Without approval for 30 days' worth of the drug at a time, I have to pay the $35 co-pay every 10 days.)

The reasoning behind the denial is that Levaquin is not approved for long-term treatment of chronic Lyme disease. OK, well, we might resolve this since I'm actually taking the Levaquin for one of my co-infections, bartonella. So maybe it'll get approved. Until then, I'm paying every ten days.

But that's not all the insurance company said in their letter. The letter goes on to state:

The FDA has not approved long-term antibiotics for the treatment of Lyme disease. [We] will consider coverage for this medication in the event that such use has been recognized by one of the following:
* The American Medical Association Drug Evaluations;
* The American Hospital Formulary Drug Service Information;
* The U.S. Pharmacopoeia Dispensing blah blah blah; or
* Two articles from major peer reviewed medical journals that present data supporting the proposed off-label use(s) as generally safe and effective for you condition. These articles are only acceptable if there is no clear and convincing evidence presented to the contrary in any other major peer reviewed medical journal.

This letter scared me but good. Not because of the Levaquin. That might get ironed out, it might not, but even if I have to pay $35 every ten days, it's not the end of the world.

What scares me is this sentence: The FDA has not approved long-term antibiotics for the treatment of Lyme disease.

All of my medications up until now (except the Bicillin, more later on that) haven't really been a problem. The Levaquin thing is irritating, but whatever. My many, many other rounds of antibiotics have been covered. Which is good, because antibiotics are freaking expensive.

I'm worried that this might put up a red flag at the insurance company. I've heard plenty of Lyme horror stories (some involving the eventual death of the patient), and I'm afraid that the insurance company will stop covering all of my antibiotics. (As a side note, Cure Unknown
is a fabulous and entertaining book that explains the political shenanigans that have led to this problem in the treatment of Lyme.)

Nick, as always, is the voice of reason in our house. He told me not to worry (yet) because this might just be a one-off problem and they won't connect the dots and decide to deny all of my medications. And if they tried to do that, we could raise a stink and fight the decision. Sigh.

On to my other problem medication, Bicillin. As I mentioned in my previous post, my insurance company believes that the drug should only be administered in-office, which is ridiculous, and my doctor's office is working to get them to change their policy. Until then, if I want my Bicillin, I have to pay out of pocket.

Nick and I have been talking about this, and I think we're going to pay for the first month of the drug now. I don't know how long the insurance negotiations will take (or even if they will resolve in my favor), and I want to start this next phase of treatment as soon as possible.

Nick and I called a few pharmacies today to figure out who has the best price on the drug. Costco looks like the winner, and I think you can get prescriptions filled without having a Costco membership. Target might actually beat Costco on price, depending on how the drug is packaged. You can get the pre-filled syringes, or you can buy syringes and a bottle of the drug and fill the syringes yourself as you go. At least that's what was said on the phone today. I've found that what a company tells you on the phone is often wildly different than what you hear when you're there in person, so who knows how this will play out.

The weariness, the fever, and the fret

I feel as though I should write an update. My brain functions today, no small feat. My body, however...I feel it is failing. Bit by bit.

Tomorrow might be different. Some days I've got a mind that's weak and a back that's strong, while today I can think clearly(-ish) but can barely move from the bed. And then there's the spectacular combination of broken body and mind.

Ugh. I'm being dramatic. I should stop reading Keats. (Points to those who caught the reference in the title of my post.)

Anyway. I hear we have a new president. And that is a very good thing.

What else?

My insurance difficulties continue. The insurance company doesn't want to authorize more than ten days of Levaquin at a time. So every ten days I have to go down to the pharmacy and pay another $35 co-pay. We're working on the extended use authorization. Still.

And still the company refuses to accept that intramuscular injections of Bicillin can be administered at home. They classify the drug as an in-office procedure/injectable, and want me to go into the doctor for each shot. Which is, of course, ridiculous. They pay about $110 each time I see Dr. R (and I pay the remaining $90 or so). So they'd be paying at least $330/week plus the cost of the drug if I were to be injected in-office.

If I inject myself, a one month's supply of the drug is some like $650--of which I have to pay 30%. So clearly it is in everyone's best interest to have me inject at home. So my doctor is going to have to try to convince them of this, and hopefully I'll be approved to get my IM Bicillin sometime within the next century.

On an unrelated and positive note, I haven't had any further "spells" (possible seizures) since the forgetting-how-to-speak-English event. Except when I dream. Now I'm having seizures in my dreams. I've also started treating myself with Reiki in my dreams, so maybe it all evens out in the end.

My dreams are exceptionally vivid--they have been for years--to the extent that I'll do something in a dream and honestly believe I've done it in real life. Then I catch myself and realize, "No, wait, I've never done that." Anyway, it makes for interesting dream seizures.

Did I mention the new president? Because that makes me happy.

An Expert in Cat Pee

There are many things in which one might want to claim expertise. Mountain climbing, perhaps, or kung fu. Cat pee, I suspect, is on no one's list.

But I have, unfortunately, become an expert in dealing with unwanted cat urination. Yes, I claim expertise. From medical issues (cat urinary infections) to cat urine battle (Juno vs. Percy), I've been through just about everything. Lucky me.

So, gentle and caring soul that I am, I have decided to share this wealth of knowledge with you, dear reader.

I present: Anna's Exhaustive Guide to Dealing with Cat Urine.

No Bicillin yet

ARGH! Stupid insuance company. Stupid pharmacy.

I've been trying to get my injectable Bicillin for about two weeks, and I keep getting punted from one party to another. (From insurance to one specialty pharmacy, to insurance, to a different specialty pharmacy, back to insurance.)

Now my insurance company is saying that IM Bicillin is not a "prescription" drug because it is always administered in a physician's office. My LLMD warned me that this might happen, and he'll need to talk to their medical director to explain that it really is cheaper for them to give me the drugs and inject at home, rather than pay for a office visit three times a week.

So, yeah, I'll probably get my prescription...eventually. But when? So frustrating!!!

Performance Art

A couple of nights after my last scary neurological experience, I was talking to Nick. And then the words stopped. I couldn't find my words. Now, with the progression of my disease, I've had other word-finding problems, but they have normally been isolated, like forgetting the word for "blender."

But this time, I lost almost all of my words. In a totally academic meta move, I forgot the word for "word." I could see each letter spelled out in my head. W. O. R. D. But I couldn't string the letters together to form the word "word."

And then I realized that I could still speak in French.

"Les mots!!!" I exclaimed. (Words!) And I proceeded to rattle off in broken French.

Nick, I should note, does not speak French. He knows about five words and one complete sentence, the translation of which is "I have a very fierce ferret, so you'd better do what I tell you to."

At the time, this was a teensy bit scary, but also absolutely hilarious. I mean, forgetting the word for "word"? It's too perfect. I'm sure some gloomy, cigarette-smoking European theorist is soiling his pants with excitement as I type this.

Little by little, I got my words back. Nick said, "You know, I'd tell you to rest and get to bed, but I can tell you're having a good time with this."

And, oh, it was true. It was just really interesting to the peanut gallery in the back of my brain to watch the rest of my brain try to make my mouth cooperate with what it wanted.

"My disease," I said, "and my life...it's all just performance art! And you are my captive audience."

In Neurological Terror...

I just forgot how to climb stairs.

Seriously.

I put one foot on the bottom step. And I didn't know what to do next. I was certain that if I moved my other foot, I'd fall. It seemed impossible that I'd just come down this flight of stairs, and that I had previously moved with (comparative) ease up and down the two flights of stairs in my house.

I could feel panic building. Because this was SO NOT COOL.

Logically, I knew that I knew how to do this. I knew that physically I was still capable of climbing stairs. The muscle memory was there, even if my brain refused to acknowledge that.

So I closed my eyes. And I ran, saying over and over, "Don't look don't think don't look don't think." Because if I stopped, I wouldn't make it all the way up.

Now I'm on the top floor of the house. I hope I can get back down later.

Part of me thinks this is hilarious. I mean, really, it's kind of funny, right? Stairs. Dude. They're stairs. Not rocket surgery. So it's funny.

And the rest of me is absolutely terrified.

I'm home alone and I'm really really scared right now.

Update @ 6:44PM: Nick came home shortly after I wrote the above post. I was applying self-Reiki, and he added some more healing energy into the mix. After a few minutes, he helped me down the stairs and I got some food into me. And more Reiki. Later I made it back up the stairs, largely unassisted.

I'm thinking it's probably a combo of the new meds and resulting die-off reaction, plus the exhaustion of the last two days.

Goes up. Goes down. Round and round we go.

Snacking

One of the drugs I'm taking requires NO EATING for two hours before/after taking it. So I usually take it in the morning between an early breakfast and late lunch, and then at bedtime.

This means no more bedtime snacks.

Which makes me cranky. I want my bedtime corn flakes!!!

Medical Update

Today I saw Dr. R. I've made little progress against this illness so far, and we discussed where to go from here. In treating chronic Lyme, there's a lot of variation in how aggressive you want to be. The more aggressive you are, the more likely you are to have severe die-off reactions and therefore feel miserable. But you're moving faster. Short-term pain for (hopeful) long-term gain.

It surely comes as no surprise to anyone who knows me that I want to be as aggressive as possible, within the limits of safety and our financial resources. With that in mind, we are moving from oral antibiotics for Bb (the Lyme bacteria) to intramuscular injections of bicillin. (Next step, if this doesn't work, is a PICC line for IV antibiotics. Much more expensive, and higher risk. And insurance companies often don't want to pay.)

We are also switching over to Levaquin for bartonella, and adding Flagyl to disrupt the cyst form of Bb. We are discontinuing the azithromyacin, bactrim, and ceftin. And we are adding a supplement called Lumbrokinase to treat possible biofilms and hypercoagulability, along with glutathione precursors to help with liver support/detox.

The breakdown of all of this is that Nick is going to be giving me shots in my butt three times a week. And then my butt will hurt for two days. At which point I get my next shot. I am going to be totally butthurt. At least I'm not afraid of needles.

The schedule for all of this is as follows:

Today: Stop azithromyacin and bactrim. Start Flagyl and new supplements.
One week out: Have first bicillin injection. Stop Ceftin.
Three weeks out: Begin Levaquin.

We're spacing out the changes so we can monitor my response to each.

So the updated med list is: Bicillin injections, Flagyl, Levaquin, sertraline, nystatin, levothyroxine, clonazapam, vicodin (as needed for pain), Astelin allergy nasal spray, birth control pills, multi-vitamins, amino acid supplement, B12, omega-3s, vitamin C, vitamin D, acetyl-l-carnitine, ashwagandha, Fibroboost, quercetin, Lumbrokinase, glutathione precursors, d-ribose, and probiotics.

What goes up...

Every time I start to get optimistic and write something like "I think I'm finally making some headway against the neurological symptoms of this disease" or "Neurontin (generic name: gabapentin) has so far been a big hit," reality steps in and hits me in the face with a frying pan. And instead of little stars and twittering birds dancing around my head like in a cartoon, I get laughing spirochetes. They mock me. Jerks.

The last couple of months seem to have followed the same pattern. I'll feel like crap, suffer through a die-off reaction, then slowly start to feel a teensy bit better. Then I'll have four or five days where I begin to think "Gee, maybe I'm getting better!"

At first I'm nervous because I don't want to over-extend myself (a major flaw of mine), so I'm really cautious. Then after three days, maybe four, I think it's going to stick, so I make plans about what I'm going to do. I'll start a project. I'll get excited.

And then--BOOM--just when I think things are looking up, I come crashing back down.

I was feeling (relatively speaking) pretty good from December 20 - 25. I signed up for classes at the Tai Chi and Qi Gong studio nearby. I almost finished reading a book. I went on a long walk through the snow. I had coherent conversations!

And then I declined. On Monday (December 29), things started to get pretty rough. By today, I just couldn't get out of bed. I tried. Failed. I eventually rolled out onto the floor and crawled my way over to a chair that I used to pull myself up to standing.

I'm taking a sick day.

It's been difficult emotionally. The brain fog has returned, along with the word-finding difficulty. Yesterday I found myself standing in the aisle at Whole Foods, cart full of groceries, wondering what I was doing. What was I supposed to do next? I had a piece of paper with all of the items crossed off. So what now? What do I do?

I guess "What now?" is the ever-present question in chronic illness. All of my excitement and my plans have been put on hold...again. From yoga to reading to cleaning up my snow-and-ice-damaged garden, it's all on hold. Indefinitely.

I am not good with the indefinite. I like time lines and lists and organization and plans and expectations. Without these things I feel lost. Honestly, it terrifies me. My entire life has been a quest to find order in chaos, to establish that I have power and control in my own existence.

At the heart of my Lyme struggle--physically, mentally, emotionally, spiritually--is a search for balance. To find peace between order and chaos. Perhaps wellness lies between illness and health. Perhaps wellness is balance.

Addendum: I just read over my post and something hit me. What are my plans for this evening? Why, I'm attending an anyi despacho ceremony, lead by Rose De Dan, the woman I see for shamanic healing. And what is an anyi despacho ceremony? Rose writes:

A despacho is an ancient ceremony that melds the assembling of consensual reality (the world we all agree exists here and now) with offerings and prayers to the Spirit World for the creation of ayni (balance and harmony) in our lives, healing and release of energies that are standing in our way of fully stepping into who we are becoming--our limitless possibilities.

Hmmm...fitting, no?