Everything Old Is New Again

You may be thinking: Does Mary really need another vanity project? The answer is decidedly no. Actually, what you’re reading now is an old one.

Almost exactly three years ago I started the enrollment process to become part of a clinical study evaluating the effectiveness of occipital nerve stimulation for migraines. At the time, I knew that I definitely wanted to document the process but I was sure I wouldn’t reliably keep a journal of the experience for my own purposes. I also knew that my writing would be better if I thought someone besides me would be reading it (enter the vanity in vanity project)

I started the blog in February of 2006 and called it “That Headache Girl.” I didn’t want to write exclusively about headaches and the surgery then, so there were plenty of filler, unrelated posts. Not long after I had the surgery I was finally able to move out of my parents’ house and up to Evanston to start a new job. Pretty soon self-consciousness and new job jitters set in and I pre-emptively deleted the blog, but saved all the posts in a Word doc where I wrote the rough drafts for each post.

For the first time since I deleted the blog (in August of 2006), I started re-reading the old posts today and deemed them fit for public consumption again. Except for some details here and there that I edited out today, I just re-posted the old posts as they were in the Word doc. When I originally wrote them, I often made changes and edits when I published them, but I didn’t feel like hunting for old typos, expired hyperlinks, etc. I also neglected to date any of my posts in the Word doc, so I’m not sure on any of the dates unless otherwise specified. And as you can see from how these posts are dated, I re-posted them all in one day. Just pretend that it’s 2006!

Back to the Good Life

Anyone who has ever published any kind of creative endeavor on the Internet knows the medium is a blessing and a curse. At its best, it gives you the freedom and the ability to express yourself however your heart desires. At its worst it can make you feel a bit silly about said expressions over time. It can be kind of liberating to know that so much about yourself is floating around out there for anyone with a web browser to find, but kind of annoying to know that it’s just as easy to find the bad stuff. In the long run, I’ve found, publishing yourself online is one of the best ways to see how far you’ve come. Yearbook and Flickr photos only convey so much. Or at least that’s how I feel about it today looking back on a self-indulgent Knotmag story I wrote three years ago.

At the time we were publishing a series of essays called “Sweet Talkin’” in an attempt to recapture the lost art of writing love letters and observing matters of the heart. Before long Jennie asked me if I’d mind writing a letter to my health, a break-up letter, if you will. I balked at first, afraid of looking whiney and grumpy and self-obsessed. Although it was published with very few edits to the content, I always felt that it was trite -- that it made me look like I was more content with my health situation than I actually was. I thoroughly believed, and still believe, the things I wrote. I just had no idea how to put them into action.

I still have my quibbles with the writing – what’s with all the Weezer references and why the extended metaphors to writing as if I was a jilted lover? But much to my astonishment I’m re-reading it and actually feeling as determined as I sounded. I finally have the job I wanted and in a couple months I will probably have that studio apartment I wanted too. Unfortunately, my sister gets to put up with me until I do. And with any luck, moving to Chicago will provide me with better blogging material. However, if you ever see me at a Starbucks or Borders, pretentiously typing away with a wireless connection, please feel free to throw your latte at me. I’m sure I’ll have it coming.

Salute Your Shorts

I like – and choose to believe – that my personality defies classification, that I can’t be pigeonholed. Don’t you understand? I’m complicated. But the truth is, not so much. When you break it down, I’m easily categorized. At least according to Slate's recent story: “You Are How You Camped.” And to be honest, this is prompting a bit of an identity crisis.

Author Timothy Noah makes me a little nervous when he predicts adult personalities based on a person’s response to summer sleep-away camps. He compares this predictability to Rorschach testing and I’m inclined to agree. Noah lists five types of campers: People who don’t enjoy camp, people who hated camp so much that they made their parents bring them home, people who enjoy camp, people who really, really enjoy camp, and people who really, really, really enjoy camp. So which one am I?

Even though I just said that I defy classification, I clearly fall into the first two groups, but with caveats and loopholes. Obviously. Noah, himself, identifies as a person who didn’t enjoy camp:

So you can see why I don’t mind being in this first group. As a person who was perpetually homesick anywhere I went, Girl Scout Camp, in my case, was a struggle. When I say homesick, I literally mean sick. Not just crying, but full-on sobbing that inevitably lead to rampant puking. Back then I probably just considered myself “sensitive.” Unlike Noah, I probably would’ve enjoyed camp activities had I not been too concerned about where the nearest outhouse was. It wasn’t that I was anti-social. Just sensitive. I went on to become both bright and creative (I like to think). I bet Virginia Woolf had a tough time at camp. Wait, bad example. But still.

Now for the perplexing part. Noah moves on to describe “the people that hated camp so much they made their parents bring them home.” Tragically, I fit into this category too. I’m not terribly proud of it, but on two occasions I made my parents do just this. It doesn’t help matters that I was old enough to know better and that the camp in question was a mere hour from home. Again, my “sensitivity” got to me and I became the first Girl Scout in Camp Tapawingo history to be allowed to both call her parents and have them pick her up. And what does Noah have to say about this segment of society:

“These people should not be confused with the outlaws described above. There is nothing outré about not being able to endure summer camp. The come-and-get-me set grow up to be neurotic and needy. These are people who can often be heard on CSPAN's early-morning call-in program Washington Journal, filibustering from a time zone still blanketed in predawn darkness, until the host says, ‘Please state your question.’”

This puts me squarely in Ally McBeal and Woody Allen territory, neither of whom I have a problem with. But I will dispute the “needy” part. I would argue that we came home from camp purely because we just “love too much.” We love our friends and families so much that we can’t stand to be away from them for more than two days. He didn’t mention the valuable lesson we learned from being gigantic wusses, either. I, at least, learned that I should never again succumb to homesickness. If you give up and go home you will beat yourself up far more than if you make yourself stick it out. Whether it’s six days at Girl Scout Camp or two semesters of out-of-state college. Homesickness is pretty treatable. And besides, a little neuroses never hurt anyone.

Recently noted

I’m relieved to report that my occipital nerve stimulator has been implanted permanently for a whole week – after the seven day trial period -- and so far I don’t regret my decision to do this one bit. Which is not to say that the last two weeks have been easy or painless. Honestly, there’ve been several drugs that were harder to adjust to than this surgery. I don’t want to bore anybody with a day-by-day assessment and examination of the last couple weeks. Instead, I offer a few (I hope) observations:

• I had hoped that having this surgery would make life a little more low-maintenance, which I also hoped would apply to traveling. Since all of my doctor’s appointments and procedures lately have been at the crack of dawn and out of town they’ve required a few over-night trips. Before this surgery I often felt like a roving Walgreen’s, transporting all the medical supplies I could possibly need via a suitcase and my purse. But now, I’m starting to feel more like a traveling Radio Shack. When I was packing my bags Monday night I noticed wires everywhere: 1 cell phone and 1 cell phone charger; 1 generic Palm Pilot (with which I must keep a clinical trial-mandated headache diary) and 1 charger; 1 remote control (to adjust stimulation levels), 1 charger for the stimulator and 1 charger for the charger.
• At this point I finally feel like I can return to most normal activities without doing damage to any incisions and internal wiring. The only thing that I can’t but really want to do is sit in a movie theater for more than an hour. It’d probably be OK if I brought a giant stack of pillows. So, if anyone can find me a bootlegged version of The Devil Wears Prada, you will be rewarded handsomely.
• Today I was allowed to take my first legal shower (I’ve unknowingly bathed illegally twice) today, and it was the happiest 20 minutes of my life. The stimulator’s handbook says nothing about showering being dangerous, but I couldn’t shake the feeling that it was sort of like walking into the shower with a hairdryer.
• Many, many apologies to anyone who’s tried to hug me during the last 14 days. I wasn’t stiffening or recoiling in horror from you involuntarily. I was just protecting myself from certain pain. It’s much better now, but if you feel the need to encouragingly pat me on the back, could you please aim for my knees instead?
• I didn’t see them in the operating room but my surgery was apparently filmed by a camera crew from somewhere. For all I know it could’ve been a local news station or the Discovery Channel. My name and face were never used in the segment, but if somebody sees a familiar torso on TV sometime soon, maybe it was me.

I hope everyone has a great 4^th of July weekend!

Officially turned on

For the first time in two years I have gone for more than two days in a row without a headache. In fact, it’s been five days since I had a real one – or one that required medication. My surgeon implanted an occipital nerve stimulator last Thursday morning, and aside from the predictable and treatable incision and muscle soreness, my head has been 90% pain-free. The only slip-up was this morning when I woke up to find that my two wires got tangled up and detached in the middle of the night. But once I hooked them back up and turned the device back up, the headache vanished. If I weren’t wearing a hideous soft cervical collar and banned from any neck or back movement, I would’ve done cartwheels all over my room. But let’s back up a bit.

As I’ve mentioned in other posts, I’ve been included in a clinical study/research trial for occipital nerve stimulation for the treatment of chronic migraines. After much waiting the first part of the surgery was scheduled and completed last week. For the first surgery I received only local anesthesia and light sedation so that I could be awake enough during the procedure for the doctors and representatives from the stimulator’s company to talk to me. This was the part of the procedure where the doctors place the electrodes and leads that rest near the occipital nerve, which runs around the back of your head. After several numbing shots they slipped the leads under my skin and then anchored them down depending on once I told them I could feel the stimulation/current. The leads end up being placed somewhere behind my ear, but I can feel the stimulation running from my neck to near the crown of my head, resulting in what they consider to be excellent coverage.

Then, once the leads were placed in my head, the wires attached to them had to be tunneled down my neck and back and connected to a trial stimulator worn on a belt around my waist. Normally, since this is the trial period, the wires are external for a week before they get tunneled. However, the doctor gave me the option of getting most of the tunneling out of the way during the first part, so I said yes. As sedated as I was when he asked, I probably would’ve consented to harvesting my kidneys too. So instead of the wires being run just to my neck, they run all the way down my back, to the trial stimulator. The hard part is already over. For the second surgery on Thursday all they have to do is permanently install the battery/stimulator in my back, near my waist. This time, thankfully, I get general anesthesia and won’t remember a thing. After waiting around the recovery room for a few hours they sent me home Thursday afternoon with vicodin and antibiotics. But I’m pretty sure I’ll be there overnight this time though.

Since I’ve never had to recover from any other kind of surgery in the past, I’m not sure whether this ranks as difficult or not. It took me three days to figure out how to lay comfortably on my side, and once I did, I slept so much better. Laying flat on my back, un-reclined, is still unfathomable. I’m still having trouble remaining in one position for too long, but I’ve been able to cut way back on pain meds and save them for bedtime. I have to wear this soft collar for a week to remind me not to twist my head or my neck in order to prevent the leads from slipping out of place. Over time the leads will become locked into place better as the muscle and tissue grow around them, and some “lead migration” is expected but can be corrected by re-programming the stimulator.

I was told to keep the stimulator on, at some level, all the time, as keeping it on helps prevent headaches from even getting started. And if I feel one start to come on, I just increase the stimulation with the little remote control which I’m going to have to get used to carrying. I don’t find the stimulation painful at all except when I crank it up, but since the incisions are still sore and inflamed, that’s too be expected and will improve also. Even at low settings I feel the stimulation all the time, and all it consists of is a tingly feeling. It feels just like a TENS unit all the time. Without the remote control I can still feel an increase in stimulation if I stand up, sit down, touch my head, chew, swallow, bend over, turn either way, lay down, sit up straighter, or move at all, basically.

The hardest part, honestly, is not being able to wash my hair for a couple weeks or take a shower. Instead, I’m waiting anxiously for the spray-in shampoo that I ordered online and am counting the days till I can steam up the bathroom again.

Finally, I learned yesterday that another camera crew may be present for the second surgery as some news crew is interested in doing another story about nerve stimulation and headaches, so I had to sign a release authorizing my consent. Another woman going through this process is going to be interviewed and my name or face won’t ever be used in the segment.

Let the electricity jokes begin

You can call me a lazy blogger if you’d like but that’s not going to prevent me from writing this post in the form of a "listicle." I may be a lazy blogger, but I’m also a tired one. Too tired to think about paragraph breaks and clever segues and transitions or any kind of cohesion altogether. It even gets a generic title: Things Mary Learned About Nerve Stimulator Surgery Today and Other Assorted Bits.

• If you can’t leave a doctor’s office with a few hundred dollars worth of drug samples, a Palm Pilot knockoff is a pretty good substitute, and it’ll last longer than most samples. I’m just sad that its sole purpose is to keep a meticulous daily record of symptoms and meds taken – there goes my plan to finally download and read all those classics I’ve always meant to read. It is, however, an effective alarm clock as it goes off every hour between 6 and 11 p.m. Remind me to never take it into a theater.

• It’s too bad that not all surgeons are as valiant or modest (or sexy) as the actors who play them on TV. I’ve been told that cockiness is a quality you want in a surgeon, which is true considering they’re cutting within millimeters of major nerves and organs and have the power to bring you in and out of any state of consciousness within seconds, but not so true at a cocktail party where you don’t need to be convinced how world class they are.

• For this surgery, they run wires out of my head and tunneled though my neck, and then down, where they’re connected to a battery pack/pulse generator or IPG. Previously, I knew it was going to be implanted in the abdominal area or possibly in my chest, but I learned yesterday that it’s actually implanted somewhere in between, and then back a little ways. Now I have to figure out which side I sleep on so they can put it on the opposite side. The IPG itself is about half the size of a traditional pacemaker. About the best description I can give it is that it’s maybe a tiny bit bigger than a tub of Burt’s Bees lip balm and it’s supposed to last at least five years.

• To me, the most difficult part of this surgery may be that it won’t totally control the pain since it will be stimulating the occipital nerve that causes pain in the back of my head, but not as much in the front, where the majority of my pain is. This could be fixed somewhere in the future when insurance companies start coming around, but until then I have a feeling that the phrase “I need more stimulation” will become the story of my life.

• Aside from my worries about post-op pain and complications, I have one worry that’s incredibly vain, and that is that they’ll need to shave a little more of the back of my head than I was anticipating. It also made me really glad that I’ve been growing it out for the last year and a half. They said it grows back pretty quickly.

And the future is: electric youth

Due to a doctor’s office scheduling snafu that was, shockingly, not my fault, I made two trips to Chicago this week, neither of which resulted in a frenzy of shopping, but that’s OK. My disappointment subsided when my doctor walked into the exam room and asked if I was ready to become a guinea pig. My answer, not surprisingly, was hell yes. The clinic has finally been given the green light to start their clinical trial for the nerve stimulator and I was the first lucky patient to find out and get started. Next week I have to go back there to meet with both teams of doctors and begin keeping an electronic diary for 30 days. They won’t be able to implant the temporary leads until I can prove that I have six or more migraines a month (if only it were only six). So if all goes well I could have surgery in as soon as a month and a half.

Now that I kind of have an idea for when this will all happen I’ve started to let myself make some plans and think about all the trips I’ve been putting off until after the surgery. Well, put off no more. Here are my plans for Mary’s Freeloading Reunion Tour. To all of you who’ve said “come visit me,” you will live to regret offering me your spare futon. If I’ve left you off my itinerary, let me know. Or if you’ve saved up some vacation time and want to come along, you’re more than welcome to. I only ask that you have a high tolerance for frequent pit stops.

• I’ll start in the Great White North, Minnesota with stops in the Twin Cities, Owatonna, Rochester and Austin.
• From there it’s on to Iowa because I could really use a guided tour of the gorgeous new Des Moines library. I never thought I’d go back to Des Moines for the architecture -- it’s a city whose skyline’s most notable feature is a building that looks like an Absolut bottle at night.
• After Iowa I could head due east for Chicago, but all you Chicagoland residents will be sick to death of me by then, unless you are my sister, and then you are contractually mandated to put me up.
• Next on the list is St. Louis where more blood relatives are obligated to entertain me and take me on brewery tours and to Cardinals games.
• Then it’s off to tap the Rockies in Boulder and Denver and take in at least one boxing class and one side-trip to a mountain gambling town.
• When I get tired of tapping the Rockies (as if that’s even possible), it’s time to trek south to Tucson to see three new cousins who’ve been born since my last trip there.
• Last but not least, The Freeloading Reunion Tour will draw to a close in L.A. where I’ll mooch off of the last of my relatives with spare bedroom.

Did I leave anyone off? Also, would it kill any of you to relocate to Seattle? I hear summer is fantastic there.

Continued…Electric boogaloo part II

More pros and cons of occipital nerve stimulation:

• Switching postural positions (Laying to sitting? Sitting to standing?) and sudden movement may cause an “uncomfortable increase in stimulation.”
• Neck, shoulder, scalp, and back massages are a BIG no-no. Damn. Same goes for acupuncture, chiropractic, ultrasound and hand-held electric back massagers.
• It’s not a given where the battery pack, or “IPG” is placed. It can be implanted in the chest, lower back or abdominal/hip region. All of which have their plus and minuses, but I don’t really care as long as I don’t have to buy low-rise jeans forever.
• Here’s hoping I never need to be defibrillated.
• The literature reports that nerve stimulators may interact with (or be turned on and off) cell phones, Blackberries, PDAs, power lines, metal detectors, theft detectors, electric blankets, MRIs, etc., but doesn’t say anything about lightening. Hmmm.
• This study, like all good studies has to include randomization, control groups (but not quite placebo) and double-blind methods. For a better explanation about randomization and why it’s apparently necessary, ask my sister the statistician.

The best part about this (and my positive attitude is subject to change if for some reason it’s decided that I can’t be in the study) is that there is an endless supply of bad puns and double entendres that can be made, which I promise I will stop making. However, electrical engineers, anesthesiologists, and you, dear readers, are invited to keep up the wisecracking. I’ll even help you. I’ve found several oft repeated words and phrases lend themselves to such jokes, and they are: jolt, zap, buzz, spark, stimulate (as well as over stimulate, under stimulate, increase of, decrease in stimulation), charge, rechargeable, turned-on, turned-off, malfunction, dysfunction, burn, excite, implant…and the list goes on.

Electric boogaloo

It’s entirely possible that this post is premature. There’s not guarantee I’ll get into the nerve stimulator trial, but this is me being optimistic for once. So, as promised, another disorganized list of pros and cons for occipital nerve stimulation:

• The study comes with a free Palm Pilot (or similar PDA) for electronic diary keeping!
• Another good excuse to avoid Wal-Mart, whose theft detectors are notorious for giving implanted people a jolt at its entrance and exits if the patient forgets to turn off their device.
• I have to promise to make every effort to not get pregnant for the duration of the trial (approx. three years).
• Rest assured, I can’t electrocute anyone but myself, so standing next to me or touching me is completely safe (especially if your shoes have rubber soles). My apologies in advance if I trip your car alarm, however.
• Would it be a good thing or a bad thing to live next to a wind farm?
• If your Hyundai’s battery dies, call me, not AAA – my battery is good for five years.
• It’s possible that at some point in the future I could be in the position to break up with some, unwitting fool. In my imagination, the scenario goes something like this: Poor fool: But, Mary, I thought I saw, like, sparks between us. Me: I don’t think so. That was probably just my surgically implanted neuromodulation device interfering with your cell phone. (See what I mean about bad puns? There’s a million more where that came from, folks).

I’m sure I’ll feel compelled to update this list soon -- maybe I’ll throw in the anatomy lesson then.

Looking ahead

My headache clinic called earlier this week to see if I would be willing to be interviewed again for another TV station. The woman who called wasn’t sure if it’d be a national network (like CNN), a local station (like last week) or for something like an infomercial. I initially told her yes, but when she called back the next day with more details I turned her down since it was difficult, strategically, to get there at the time and day they needed. I told her that if the crew wanted to come down here, or meet somewhere between here and Chicago, I would be more than willing to be interviewed mostly, because vanity aside, being on TV is kind of fun.

While I had her on the phone I asked if they knew yet when the trial would officially get started so I could begin to make some arrangements, and she told me they expected it to be approved (the surgical part of the team) by the second or third week of March for sure, and that she’d send me a packet of information so I could read up on the surgery and have most of my questions answered ahead of time.

In the meantime I’ve been trying to run a fact-finding mission so that I know what to expect. My favorite source for nerve stimulation information is a blog run by a girl that’s had the stimulator for her migraines for probably about two years or more with mixed results. The technology has advanced a lot since she had hers implanted, as far as where the batteries can be implanted, the size of the system, and the placement of leads for the affected area. They’ve also seemed to have worked out some of the kinks since they first came out, so hopefully I’ll have fewer complications and more success if I’m eventually implanted. My goal between now and then is to strike a balance between setting my expectations too high and being realistic enough about the results to not be crushed if it doesn’t work.

Almost Famous…almost

If anything, I tend to be over-prepared for most situations. When a trip away from home necessitates that I take one bottle of a headache medicine, I usually take three. When I might need one tube of lip-balm, my purse is overflowing with four. So when I got to my headache doctor’s office this morning and he asked me if I’d mind being interviewed by a news crew from Chicago’s local Fox station, I found myself feeling woefully unprepared.

The news team was working on a story about nerve stimulators for chronic pain and since I’m hopefully going to be in my clinic’s clinical trial for the device/procedure, and happened to have an appointment today, my doctor thought I’d be a good candidate for an interview.

I’d like to say that I felt unprepared because I didn’t have a rehearsed sound-byte that would prompt other headache patients to beat down their doctor’s door to find out about the surgery.

Had I been thinking when I left the house this morning, I would’ve taken a complete change of clothes. That pink, boatneck top would’ve looked better on camera, and those silver hoops would’ve looked a lot better than naked earlobes. To compensate, I made sure my grandmother’s pearls were prominently on display and not obscured by the collar of my shirt. Mostly, I was concerned that my hair would look too flat and that it would be obvious that I’d been wide awake since 3:00 a.m. and hadn’t spent enough time with the mascara wand covering that up.

The cameraman wanted to be sure to film me while walking and talking to the reporter and through some miracle I managed to do both without running into a wall. Whatever composure I managed to maintain during the interview itself though, I quickly lost when they zoomed in for a close-up of me reading a magazine. To watch me read, you’d think I found Time magazine to be hilarious.

So the moral of the story is this: if I had journalism school to do over again, I would’ve taken at least one broadcasting class. Appearing poised on-camera can’t be rehearsed in a bathroom mirror.

Making myself at home

Original post date: 2/23/06

I had grandiose plans about a year ago when I was first looking into nerve stimulator surgery; that I would start a blog at the beginning of the process as a means of keeping friends and family informed, and so that I could document it for myself in a way that’s more fun than scribbling in a diary.

Little did I know back then, that this process would be so protracted and complicated. Now, after much research and phone calling I’m hoping to get into a clinical trial in a few weeks and get the ball rolling again. And it’s good that I have a few weeks to tinker with – I need to practice saying things to doctors and nurses like: “I’m plugged in and turned on” and “I’m juicing up my battery right now” with a straight face. But who am I kidding, I’ll never be able those things or any variation of them with a straight face, will I?