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Getting proper healthcare is utterly baffling. It really is.

Sarah Lane — Mon, 09 Nov 2009 22:21:10 +0000

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.

Like sands through the hourglass, so are the days of my life.

Sarah Lane — Fri, 06 Nov 2009 19:34:38 +0000

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.

Sarah, the Goddess of Brain Tumors (part 2)

Sarah Lane — Mon, 02 Nov 2009 01:25:23 +0000

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.

Fun with trains + iPhones with no 3G service

Sarah Lane — Thu, 29 Oct 2009 07:58:19 +0000

I had a grand mal seizure. Want to hear?

Sarah Lane — Wed, 14 Oct 2009 03:18:44 +0000

So. I had booked what sounded like a pretty neat job… I didn’t know much more about it than that I’d be participating in an “expert panel” for MSN in the tech/gadget arena in Palos Verdes on October 12/13th, and my birthday actually fell on that first day, so I thought, well, huh, I’ve agreed to be working that day anyway, so why not fly down to LA for the previous weekend and see all my friends?

The MSN folks had arranged a car service for me, so as I descended down into baggage claim from a pleasant, wifi-enabled 1.4 hour flight, I saw a jovial older British guy with the ponytail holding my “LANE” sign (obviously at that time I had no idea he was British or jovial, but now it’s stuck in my memory). Anyway, nice guy. Led me to a Lincoln Towncar and didn’t blink an eye when I asked to be driven into Venice instead of straight to the hotel in Palos Verdes (where I’d been put up for the weekend by MSN). See, I just wanted to have brunch in Venice first. That’s all I wanted to do! Couple hours tops, two days before actual work. Slight chance of shopping. Slight!

So Venice resident Damon Berger (the future person to save my life, though I didn’t know that last part yet) and I walked two blocks from his brand-new kickass little bachelory beach bungalow to Abbot Kinney Blvd, the hipstery granola beautiful people main drag. We took our time choosing a place (which was nothing new, because we’re both picky about our food/service/sun exposure in our own ways) and settled on an organic/German/everything brunch spot called 3 Square.

We sat outside along the edge of the East/West wall at a 2-person table, just out of direct sun. Now here’s where everything gets fuzzy, because I remember certain things I said over the next five or so minutes, some of which were actually heard and have been backed up on official record, and some refuted for total inaccuracy/whimsy/fake language not recognized by any linguistics expert, anywhere. I remember asking to add mushrooms to an otherwise mushroom-free omelette, and was later told that I commented on how good bircher muesli was (it was an item on the menu). I remember the former but not the latter. Basically this is right around the time where things were falling apart upstairs. Keep in mind it was 11:30 am.. nobody was partying.

At this point, the really truly last thing I do remember is Damon looking across the table at me in a very concerned way and asking me if I was ok. “Sarah, are you ok? Seriously, are you ok?” And I heard him, and I saw him, and I couldn’t answer him. I could NOT stop whatever was coming. And that’s when I blacked out.

I’ve been told that at this point my entire body began convulsing, my eyes rolled back into my head, my mouth bled from where I had bit into it, and my lips turned blue. I guess that means I wasn’t breathing… blue lips? It wasn’t cold outside. Damon grabbed me and had someone pull my chair out from under me, brought me to the ground, and yelled for someone to call an ambulance. Apparently it arrived within about five minutes… good thing we weren’t dining in South Central. Damon would later tell me that he was convinced I was having either a heart attack or a stroke and dying right then and there, in his arms, and that it was the scariest moment of his entire life. I’m terribly grateful not to remember this part.

What I do remember is waking up in the back of an ambulance, an EMT to my left, Damon to my right. Now, this sounds really crazy and stupid but my initial thought was that I was being kidnapped, because when I begged to be let go they tried to hold me down and soothe me and keep in mind that I had no idea what had happened at the restaurant. I was in the back of a van and a strange man wanted to put a needle in my arm. I believe I kicked him. (EMT guy, I’m sorry I acted so badly with you, I know you were just trying to help. Keep on keepin on.)

I was admitted to Marina Del Ray Hospital, a place that I never knew existed, even though I lived less than ten miles away for two years. Kind of a small-town, kitchy feel to the place, and I say that with no disrespect- the kind of hospital where you don’t feel lost in the sterile shuffle of modern medicine. I was completely doped up for my 2.5-day stay, so forgive my swiss cheese memory, but I do know that the first IV drip I got was phenobarbital, the MOST WONDERFUL DRUG IN THE UNIVERSE, and also the #1 anti-seizure medication prescribed to dogs. Yay trivia! This is a little embarrassing to admit, but after four hours of intervenous intergalactic planetary space flight, I spent the rest of my hospital stay trying to come up with reasons why the nurses should give me more phenobarbital. (They never did, because they are mean, cruel nurses and only out for themselves.)

First test I got was a cat scan, which was a piece of cake… sort of like a mini-MRI. I think the next one was my actual MRI (which I was particularly sedated for, since I had heard it was a really claustrophobic experience… totally fell asleep in there). The third test was an EEG, which was a series of wires and suction cups attached to my scalp. I’ve never looked uglier…fact. There may or may not be a few iPhone pictures to back me up, but just take my word for it.

Anyway, so yeah. 400 tests, strong drugs, really nice nurses, and some not-that-horrible hospital food. Besides the circumstances under which I was there, I really think it could have been worse. My hospital roommate was Mrs. Jimenez, who had literally had BRAIN SURGERY several times already. A lovely woman with a great family, and I hope she gets better.

I’m now on a drug called Phenytoin (brand name Dilantin), which I take three times a day and has one of the worst list of side effects I’ve ever read. You guys, it’s almost funny it’s so bad. This is anti-epilepsy medication, which nobody really thinks I have, but is my best overall seizure suppressant until I get a clear diagnosis and better treatment options with a local neurologist here in San Francisco. I hate it and I hate the way it makes me feel. I feel slow… not funny, not smart. I am not legally allowed to drive a car. Plus, I’m not supposed to drink alcohol, which is ONLY THE ELIXIR OF LIFE, NOTHING BIG.

They think I might have cysticercosis, likely contracted during my year traveling abroad. It’s pretty gross. I’ve actually tested negative for it already, but they also think I have something called a blood-brain barrier, which might cause me to test inaccurately in tests such as these. BECAUSE I NEED AS MUCH OF A CHALLENGE AS POSSIBLE WHEN IT COMES TO MY BRAIN.

So that’s where I am now. I have my first neurology appointment here in SF on Tuesday, and we’ll go from there. Think positive! I also just wanted to thank everyone who’s called me or written me or bought me beautiful flowers (McCloskey), sent various notes of support and encouragement, etc. I hope I can get back to all of you, but just know I’m reading everything and really appreciating the love.

A quick but heartfelt congratulatory note to my cousin Martin and his beautiful bride Rebeca, who are getting married in Boston on Saturday in a gorgeous, joyful ceremony that I’m devastated to have to miss. A match made in heaven if there ever was one!

Current Tech sneak peek

Sarah Lane — Thu, 03 Sep 2009 17:10:28 +0000

Produced by, edited by, and starring Yours Truly. I’m a one-woman wonder, people! But seriously, editing is hard. I’ve taken 48 hours of Final Cut Pro training and this little piece still took me the better part of a day. I’m excited to keep practicing, though. As a producer who’s always had to rely on others in post-production, it feels so good to say I did everything mahself! Mag.ma really is great, btw. I see no reason to continue trolling around YouTube when a site like mag.ma exists.

New site, new rules (part MCXIV)

Sarah Lane — Mon, 31 Aug 2009 03:11:47 +0000

Well… how do you like it? I’ve got a few tweaks/additions to make yet, but all in all I’m thrilled with how it turned out. A huge, monument-size (think Burj Dubai) thank you to my friends at Squarespace for helping me make my new design a reality. Krystyn, Kris, Dane, Erica, and the entire Squarespace crew have been the BEST PEOPLE EVER, and I can’t thank them enough for helping me build the next generation of sarahlane.com. Does anyone know how to say

yellowBird: I think we're in the future now

Sarah Lane — Wed, 26 Aug 2009 17:46:24 +0000

Easily the coolest camera I’ve seen… ever? Yeah, I think ever. Created by a company called yellowBird (here’s their back story), the six-lens camera acts a lot like Google Streetview in the way the user can drag the image up/down/left/right, but in the form of motion video, rather than a still camera. The result?

Go on, inspire me.

Sarah Lane — Thu, 11 Jun 2009 22:13:18 +0000

Lately I've been in search of design inspiration for a future web show of sorts that I'm putting together at Current Tech, which is very exciting for a few reasons:

I'll get to do more of what I love most... talk about the stuff I'm passionate about!
Current gets to experiment with new avenues of video, like LIVE and STREAMING!
We all have more reasons to participate in the Current Tech community and hang out together!

Tengo mucho identities. Pass it on.

Sarah Lane — Fri, 29 May 2009 19:16:48 +0000

I've been meaning to update you (yes, you!) on all of my current projects, as there are many and I haven't been the best at keeping everyone in the loop here. The reason I know this is because on an almost daily basis I get emails and tweets from people of seemingly normal intelligence who don't know where I'm working, what I'm up to, or even how to find me online. I'm not going to go into why I think that's a little weird, since I'm the first result in a Google search for "Sarah Lane", "Sara Lane", "Sar Lane", "Shara Lane", and my personal favorite "Sarah Lame", to name a few. Instead, I'll just list my projects here (in order of inception because I love them all equally).

This Week in FUN

In December 2008, my friend Martin Sargent and I, both unemployed, had a lot of free time on our hands and decided to create a weekly show called "This Week in FUN" (AKA "TWiF") on the TWiT netcast network. It started out as a little experiment when our friend Leo went to France for a couple weeks and left us his facility and resources. Leo had recently given me an intensive Tricaster/mixer/etc. lesson, so I felt comfortable running the technical side of things. Since the TWiT network is so heavy on technical content, we thought a talk radio-style show about silly internet stories might be a fun diversion for TWiT's legions of fans. It was also nothing more than a fancy live stream... miss the stream, miss the show. No downloadable/subscribable anything.

Turns out, people really seemed to enjoy TWiF and we quickly realized that the live stream was great, but too limiting for many folks' schedules. Around episode 12, Leo and his team made TWiF an official TWiT netcast, meaning that along with our weekly live stream, we also started offering on-demand audio versions of the show.

We just taped our 20th episode of TWiF, and I'm really proud of the progress we've made. What started out as a bit of a joke has turned into a really fun project with a ton of really cool, dedicated fans who interact with us all over the internet. Coming soon: video downloads.

Watch live: Fridays at 3 pm Pacific time at http://twitlive.tv
Chat live: http://irc.twit.tv
Listen/subscribe: http://twit.tv/twif
iTunes: http://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=311693613

net@night

In late January, net@night co-host Amber McArthur asked me to fill in for her on the show during her impending maternity leave, which I was thrilled to do since I 1) wasn't working full-time yet and 2) already loved the show, which centered around everything internet-related (my THANG). I co-hosted four episodes with Leo and had a ton of fun. Once Amber was ready to come back, she and Leo asked me to remain on net@night as a regular contributor and I was elated to be a permanent part of the team. Now, you can watch me live every week talking about my favorite new internet toy, or listen at your leisure!

Watch live: Tuesdays at 4 pm Pacific time at http://twitlive.tv
Chat live: http://irc.twit.tv
Listen/subscribe: http://twit.tv/natn
iTunes: http://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?id=101248932

Current

In mid-February, I joined the team at Current full-time as an online producer in the news department. The Current management was awesomely accommodating of my outside projects and even allowed me to start/leave early on Fridays to give me time to keep hosting TWiF (an hour's drive away from San Francisco in Petaluma, CA). Meanwhile, in my new position at Current I was enjoying learning a whole 'nother level of web metrics I had never really focused on in all of my past TV/production work. I also was making new friends! Really cool ones!

In early May, I was offered (and accepted!) the opportunity to move into an ideal role as the sole manager of Current.com's tech channel, which had amazing potential but had been sorely neglected in the past without anyone at the helm full-time. The tech channel is an utterly perfect fit for a tech news/app/service/gadget junkie like me and I'm pumped to make it an amazing destination for tech stories, videos, tutorials, conversation, and community. If you haven't poked around on current.com/tech and gotten familiar with it yet, please do. Don't hesitate to give me your honest feedback on what you like about it and what you want to see changed or added, because I'm not interested in making Current Tech a super place for me, I'm interested in making it a super place for as many people as possible. I also have some rather lofty, ambitious goals for the channel that both frighten and excite me, but also seem like the right next steps. As soon as I can tell you about them, I will. Video is involved. :)

Main channel: http://current.com/tech
Current Tech blog: http://blogs.current.com/tech
Twitter account: @CurrentTech

If you're still reading this, you must really be interested in my professional life and for that I thank you a thousand times! I'm not going to actually write out "thank you" 1000 times here, but rest assured I'm saying it in my head. Perhaps even in Spanish. Now you're really truly up to speed.