Jill Bolte Taylor & me: we're like THIS

Sup Internet! Sarah’s brain here. Feeling shitty after a loooong bout with anti-parasite medication and steroids. What up y’all?

Just kidding, it’s not really my brain talking, it’s just me (my brain doesn’t get talking rights anymore, stupid thing doesn’t even work). I don’t want to make this sound too dramatic, but Prednisone? Horrible steroid, makes people go completely insane. I know this because I’m one of those people. For example: I had a tantrum, directed at my own mother, in the street. A street with a lot of people walking around and noticing. A tantrum. You think to yourself, “oh haha, she’s just calling it a tantrum but that only happens with babies and toddlers”…. I. HAD. A. TANTRUM. I actually had several if we’re keeping track. I was only on the Prednisone to combat the Albendazole I was taking in an attempt to kill my parasitic tumors, so… you know. It just felt unfair overall.

Today was my last day on Prednisone (I had to spend five days tapering off because apparently just stopping cold turkey would make me devour a birdhouse and then cry about it and then maybe punch an elderly person), and I couldn’t be happier. I hope I never have to take that drug again. It gave me equal parts mania, despair, confusion, hunger, nausea, and a lot of tears. The kind of situation where you can tell yourself that it’s the drugs, it’s not you, but the thoughts in your head are still there and cannot quite be ignored. Scary. A lot of friends and strangers have come forward with their own Prednisone stories… people take it for asthma, lupus, all sorts of things. Sounds like some people tolerate it pretty well, and others don’t.

Real quick for anyone wondering, I have yet another MRI on Monday morning to see how things look upstairs after this whole radiation/steroid treatment, and if my tumors are 1) smaller, 2) unchanged, or 3) worse. I’ll let you know either way. I think I said a few weeks ago that I didn’t want my blog to become a wasteland of medical details, but hey. At least I’ve got something meaningful to write about. And it makes me feel better to share all of this with all of you, so I’ll keep at it, and you can stay along for the ride as long as you like, until you start vomiting (and you will eventually, I assure you).

I did something sort of weird today, and against my better judgement I’m going to share it with you. If it seems narcissistic or crazy or otherwise just really bizarre and unnecessary, could you do me a favor and just chalk it up to me being a narcissistic, crazy, bizarre, and unnecessary person who is on way too much medication and may not be thinking completely lucidly? Thanks in advance.

So. I watched a particular TED talk at the insistence of a dear friend who knew I would get a lot out of it. He kept insisting that I watch, hammering it home, annoying me about it even, because he knows me and knows that people are always sending me links to “world’s most amazing video” and often times I just don’t get to it. You know how that goes. You say you’ll watch “world’s most amazing video”, but you end up not ever getting around to it, and it doesn’t matter because there’s this other video you did watch involving a cat who eats with chopsticks and SOMETIMES WE JUST HAVE TO CHOOSE WHAT TO DO WITH OUR TIME, AMIRITE?

This is the video I watched: a speech by a crazy smart brain scientist named Jill Bolte Taylor who had a very unique experience that is not at all the same experience that I had, but that still spoke to me in ways that would never have been possible before I had a seizure and realized how fragile our brains (and our lives) actually are.

So, this friend I told you about? The one who knows me well enough to know that maybe I wouldn’t watch this amazing video because I might get caught up in, I don’t know, registering for Gowalla or some stupid shit like that (no offense to Gowalla, really, but I did actually register for that today)? I wanted to prove to him that I did indeed watch the dumb video he sent, and because we’re Internet nerds who do things like save chat logs to prove each other wrong and take screen shots of websites that have errors and laugh and feel superior and such, I decided to record myself watching the video to send to him later so he’d have proof that I really did watch.

Here is that video. The first couple minutes are cut off, but maybe you’re really creative or stoned and want to try to match up the video above with my reaction video? If neither, don’t worry, I captured the audio which I think captures the essence of what I’m trying to convey.

I was very moved by this woman, this stranger, this person who I could have never heard of or seen or known existed and been totally fine. Totally fine meaning possibly dying of a brain tumor, but you get my drift. But I think it’s worth it, and as I’ve had a lot of downtime lately and been experimenting more with video and life and the organicness (is that a word?) of it all, I just feel like I’m ok sharing my actual experience with you, here, now.

Not ok? Narcissistic/crazy/bizarre/unnecessary? Well then forgive me Father, for I am drugged. It has been 33 years since my last confession.

US Turf Wars, etc. Also, Last.tv!!!

We need to name the old people who live in the tiles of my fireplace.

I can't do this alone. Rally, comrades.

Posted via email from sarahlane's posterous

Take Away a Woman's Driver's License & Watch Her CREATE MEDIA!

This was a pretty mild ride on the 22. You never know with that crackhead line.

I’m really starting to enjoy taking video of boring situations and finding the right music to make it seem like we’re all in some poignant movie.

Wilco- Handshake Drugs

Getting proper healthcare is utterly baffling. It really is.

In my already exhaustively exhaustive (I’m exhausted) play-by-play of my brain activity within the past four weeks, there is one part of the story I’ve neglected to mention. I know this doesn’t seem possible, because I have mentioned every detail that could ever be applied to any story, anywhere, and I also added links. But this particular detail might apply to you more than the rest, or just interest you, because by golly it involves HEALTHCARE and INSURANCE, two of our favorite things!

When I had an allergic reaction to Dilantin, the anti-seizure med from hell, and was switched by my neurologist to the infinity more pleasant Keppra XR, I still needed my insurance company’s approval to cover the cost as part of my insurance plan (a good one through Current TV, btw). It would have probably taken a day or two to push through, but because of what the neuro considered a very timely situation, she started me on Keppra XR right away. How? The office had a drawerful of samples that some rep from the manufacturer had left for people like me to try out. I took a week’s worth.

But then my insurance company denied me coverage for Keppra XR, apparently because they didn’t feel there was enough research to prove that the XR (“extended release”) version was that much more beneficial.

Here’s the thing about extended release medicine if you’re not familiar… having a drug release the good stuff more slowly and over a longer period of time can really help overall stability and “coverage”… especially when I have barely enough short-term memory to remember to take multiple doses of anything. Or drink water. Or blink.

So the doctor’s office appealed my insurance company’s rejection with what I imagine was a stern doctor’s note about how my condition is unstable complete with medical records and just put the damn thing through we’re already started here kind of stuff.  By this time, I had run out of Keppra XR samples, but my doctor’s office had more in the drawer! Another week’s worth! Crisis averted.

And then my neurologist’s appeal got denied. I was basically freeloading off the drug manufacturer because my doctor gave me free samples of a drug that worked well for me and my insurance company basically told us all to eff off. Now, mind you- this does not mean I wouldn’t have been able to BUY Keppra XR myself, I mean, I have a prescription, but it’s hundreds of dollars per month.

The doctor’s office announced the tragic news to me but nobody over there seemed all that upset or worried (there were still more samples in the drawer, and my doctor was going to call someone over at the ins. company directly). But, you know, these processes always take forever. There are archaic practices still in use, like FAXING and HAND-WRITTEN PRESCRIPTION NOTES THAT USE ROMAN NUMERALS, NOT EVEN KIDDING. I just felt very bounced around in a loophole. And Keppra XR is not like some fun, “woohoo I scored” kind of drug that people really want, by the way. Its highlights include confusion and walking into walls, and not having seizures in the street.

Then I got a call from some very nice gal at my insurance company (is it weird not to say the name of the company, btw? This is post is not meant to drag anyone through the mud), who informed me that although my Keppra XR coverage had been denied, and then its appeal denied, that I still had the option to file MY VERY OWN PERSONAL APPEAL! Because I’d probably come up with a more harrowing jungle story about escaping a wild pack of porkworms than my neurologist did? Because I even know a single ingredient inside a Keppra XR? Not sure. But I filed an appeal anyway. This is roughly how it went: “I can do that? Even after …. ok, yes, yes I would. Consider me appealing. Do I need to tell you any… alright then you have a good day as well. Thank you?”

Four days later I got approved. I got approved for refills through 2099, to be exact. I’m not paying for Keppra XR for another 90 years, mothereffers! Can anyone even play that much mah jong? Both my doctor’s office and my insurance company called me to tell me the good news within the last hour. Virtual high fives!

Do you see how many insane ways this story is insane, though? I mean, WHAT. IS. GOING. ON. behind the scenes back there? Are these companies so large/mismanaged/confused that I, Sarah Lane, have 11th hour 2nd appeal powers above my own medical team? This whole dumb saga turned out well for me, but I don’t actually know how. I do know that many of you who’ve left me emails/comments/tweets/nice thoughts are no strangers to the this world of approvals and denials, but I certainly am, and am just baffled.

Also? I start tapering off my Prednisone tomorrow so let’s all hope Sarah the Hulk tapers off too. I tore up an entire mahogany dining set while writing this blog post.