My friends

http://www.sarahlane.com/blog/2009/11/11/us-turf-wars-etc-also-lasttv.html

http://www.sarahlane.com/blog/2009/11/12/alamo-square-park-on-an-epic-sunday.html

http://www.sarahlane.com/blog/2009/11/12/we-need-to-name-the-old-people-who-live-in-the-tiles-of-my-f.html

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http://www.sarahlane.com/blog/2009/11/10/take-away-a-womans-drivers-license-watch-her-create-media.html

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

http://www.sarahlane.com/blog/2009/11/9/getting-proper-healthcare-is-utterly-baffling-it-really-is.html

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 be 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.

http://www.sarahlane.com/blog/2009/11/6/like-sands-through-the-hourglass-so-are-the-days-of-my-life.html

So my new apartment does this thing where if it’s lightly misting outside, I’m talking barely-there moisture, don’t even need an umbrella type of stuff, somehow a lot of that will find a drain of some sort on the roof and collect into a substantial water droplet and fall into a specific place on the wrought-iron gate outside my dining room window. The sound is like a frying pan hitting a copper gong at a frequency just slightly slower than the seconds ticking away on a clock.

I took this video to prove that I’m not exaggerating or going overboard in any way about this.

I probably have to move. 

http://www.sarahlane.com/blog/2009/11/1/sarah-the-goddess-of-brain-tumors-part-2.html

Well. A lot has happened since I wrote that long, rambling, sort of embarrassingly dramatic post about having a grand mal seizure. I probably wouldn’t have bothered with a follow up - because quite frankly, I’m so sick of talking about brains, how brains work, how brains fail us, why brains suck and are ugly, etc, that the next neurologist I meet at a dinner party I’m going to glare at the entire time, just because – but I knew I had to bite the bullet because 1) a lot of you really, truly care about me and my health and have told me so, and because I value your support I feel that I owe this to you, and 2)  I’m on so much medication that I’m basically a drug addict at this point and if I don’t write it all down YESTERDAY, I’ll probably forget that the entire incident and ensuing medical bullshit details ever happened. Which could actually be awesome, I’m not sure why I’m not doing that.

So remember that epilepsy medication called Dilantin that I was prescribed to keep future seizures away? And how I said that the list of side effects was side-splittingly funny? Well, one of them is a potentially life-threatening allergic reaction which I developed within several days, because I’m just cool like that. Me and Padma Lakshmi! At my first appointment with my new SF-based neurologist, she took one look at me and “we need to take you off Dilantin. We need to take you off Dilantin NOW. This is not good.” Shitty first visit to a new doctor, but I appreciated her honesty and concern.

So now I’m on another anti-seizure medication called Keppra, which is like swallowing 1500 mg of rainbows every day compared to Dilantin. I don’t feel 100%, I still forget easy words and have walked into several walls, but for the most part it’s very tolerable. I’m suppressing normal brain functionality though, and that makes me uncomfortable because anyone who knows me at all knows that I consider myself the wittiest person currently walking the Earth, and would rather die than be thought of as dim or unfunny. Maybe slightly less vain.

Since my initial seizure and treatment at Marina Del Ray Hospital, I’ve had 2 more MRIs and a bunch of yummy blood tests, but the diagnosis has kinda changed a few times. I originally had neurocysticercosis, then after a better MRI scan they thought it looked like ganglioglioma, a slow-growing tumor that isn’t necessarily malignant, but will continue to give me seizure problems until removed. (THROUGH BRAIN SURGERY, BTW. I mean, the only thing cooler than me having brain surgery would be me becoming a rocket scientist.) Anyway, after a third MRI there appeared to be some more swelling/scar tissue around the area, which is bad, and two additional, smaller tumors, which is also bad. The good is that now it really looks like neurocysticercosis and I no longer have several brain specialists with 4500 medical degrees from the world’s most prestigious institutions giving me conflicting information. It’s the parasite! Excellent, so we all agree! SO PUMPED!

Tomorrow I’m starting a course of anti-parasitic medication designed to shrink/collapse/kill/stabthroughheartwithstake my neurocysticercosis tumors. (You are taking a shot of Jameson every time I say that word, right?) It’s called Albendazole and it’s kind of like a radiation treatment, killing the bad stuff but killing everything else too and ravaging my immune system. I’ll need to be very careful about being anywhere I’m susceptible to infections or diseases. Like H1N1, for example. You know, that flu that kills people. And might be living in the public restroom where I work.

I’m considering wearing one of those little germ masks, just to be an asshole.

Here’s sort of a weird twist to this genius plan: I also need to take a side-effect happy steroid called Prednisone to minimize the additional swelling in my brain that will arise from taking Albendazole, the very drug that is supposed to kill my unwanted brain colonies. Apparently parasites will rage against the machine when attacked, and with enough disruption I might have another seizure. The other day when my neurologist was explaining all of this to me and kept needing to refer to various notes and diagrams and I was sort of crying because, I don’t know, SHOULDN’T SHE HAVE BEEN BORN WITH THIS KNOWLEDGE AND NOT HAVE TO LOOK THINGS UP, she sighed and said “I’m sorry Sarah, but understand, this case of yours, it’s very unusual. I mean, I’ve got a Pacific Heights practice and all, I don’t see stuff like this very often,” and we both had to laugh. It’s true, she works in a richie-rich neighborhood and regularly treats patients who didn’t sleep under a bunch of filthy camel blankets in the Thar desert in 2007 by choice. I like to think she’s secretly thrilled that Sarah Lane, world-weary street urchin, came along and gave her something to believe in.

I also met with a neurosurgeon, just to cover my bases and stuff… and the consensus is that opening up my skull should not be our first plan of attack, because – and you’ll really love this- since the tumors are in my right temporal lobe and I’m left-handed, I actually store more important data in that area than a right-handed person would… you know, like THE ENGLISH LANGUAGE and HOW TO TALK… so operating in that area is all the more risky. Left-handers really deserve Halliburton’s money for our troubles or something.

So, that’s where I am in my little journey. You literally know everything I know. And I definitely don’t want this blog to turn into this boo hoo place where I can only talk about what’s wrong with me, so don’t be too put off if you’ve come here looking for tech tips or pictures of me in my 7^th grade cheerleading uniform. Once this passes, we’ll all go back to being ourselves and I’ll be wittier than ever and you will LAUGH AND LAUGH AND LAUGH AT/WITH ME.

Please think good thoughts over the next couple of weeks as I add some hardcore drug interactions to my already impressive juggling act. I hope this stuff takes. I want this to be over so, so badly, and despite the cool factor I don’t actually want brain surgery. I just want to be me again and to be happy to be part of this wonderful life. And to bathe in Lorazepam regularly….It’s like impossible to get pissed about anything on that stuff. Amazing.