In the waning days of pain. . .

Right this very second, I think I must be insane to go through with this surgery! I feel halfway decent, and I’m willingly letting a doctor cut me open and put THINGS inside me, permanently. In about 24 hours, I will be in surgical pain, with stables up the back of my head and in my back, a head I’m not supposed to turn until scar tissue forms, my classes covered by subs . . . and hopefully a great reduction in the grotesque nerve pain that’s been clouding my life for five years. Phew. Okay.

On Friday, I get my permanent neuro stimulator implanted. I had a trial in July where the wires went into the back of my head and the battery was taped to my back. It was stunning—a gentle tingling electrical current completely canceled the nerve pain. I kept it on all the time, and only the second to last day, when I left it off after I woke up and got some crazy searing pain did it fail. It seems once the pain is underway, the current is not great at shutting it off.

Since the trial, the pain has been unusually bad. My doctor says a lot of people say that and he thinks it’s the contrast of having pain-free days followed by the old pain back when the trail is removed. But I think it’s just worse—I think the wires from the trial probably agitated the nerves. Last month I ran out of pain meds a week early, which has never happened before (my awesome doctor refilled the prescription early). It’s been really hard to get it under control, and too often I’ve had to throw meds at it all day before I get any relief, and sometimes I don’t. I’m hoping that after the surgical pain subsides (I’ll have two pretty gnarly incisions where the wires go to my head and  where the battery is implanted in the “back fat,” which is the best way to describe where it will go). The battery is fairly large (this is a sample that my doctor gave me after the trial so I could tape it to various placed on my back and see where it best suits:

These last few days, I have so many feelings about all of this. When the pain is manageable, I think I must be crazy. I’m willingly letting a doctor cut me open and put all kinds of foreign material into my body. I’ll have an electrical current running most of my waking hours. I’ll have big nasty scars. The first time I read about neuro stimulators, I thought—damn! Now there’s a treatment of last resort! Well, yeah.

When the pain is bad, I am counting the hours. I know the recovery will be intense. I’ve got my classes covered all through next week, with the option of taking another week if I need to. My occipital nerve stim Facebook group has been great at letting me know what to expect: a lot of pain at both incision sites, as well as in the flesh where the wires are tunneled; the need to keep the neck from moving too much so that scar tissue can form around the wires (so no driving for several weeks); the possibility that the wires will move anyway (lead migration), and I’ll have to have “revision” surgery. The possibility that the relief I felt from the trial was a placebo effect and the permanent implant won’t work and will have to be removed eventually (my doctors says this happens to fully 1/3 of his patients). 

I found a video on youtube of a woman a month after she got the implant. She was in amazing shape. Then I found a video of her two years later, and she was a wreck. So this might not work. I have to be prepared for that. If it doesn't, my only real option right now, when nerve disorder treatment is still pretty un-evolved, is stronger narcotics. That doesn't make me happy at all. That Vicodin has been fairly effective with almost no side efffects had been great. I'm not sure what stronger meds would be like, and I don't want to find out.

I hate missing classes so early in the semester. In composition classes, I’m laying so much groundwork and students are practicing certain skills that need to be solid for the rest of the semester. But I reached out to a large group of friends in my department, and their willingness to cover for me was amazing. My students will be in great hands, and the lessons I’ve prepared for each day don’t require a lot of actual instructions from the subs.

I have tons of books to read, a new writing project, and a bunch of TV shows to binge-watch while I’m recovering. I have a stunningly good-natured husband who will be home with me the first three days, and is in complete support of the surgery and my well-being. I really hit the jackpot when I decided to get coffee with that guy. Still, I hate the feeling of not being physically normal and limited in any way. I can’t even wrap my head around not being able to jump into my car whenever I want. But if the stimulator works and at least lessens this crap garbage pain on a daily basis, these temporary discomforts will be worth it.

It struck me the other day that daily pain is a lot like drug addiction. It’s destabilizing, and takes up way too much time. It takes you out of the flow of life and into your own solipsistic word, distorting your perspective on just about everything. It’s exhausting, and horrifying, expensive, and demoralizing. At least with drugs, there’s a high to make it all seem worth it. There is no upside to pain.

I’ve changed so much in the last five years. One of my favorite things about getting older has been trusting my perceptions. I struggled with this a lot through my teens and twenties, sometimes to the point of deep depression and near madness. But into my thirties, I realized that my perceptions were solid, that I was sane and saw the world in a relatively measures and accurate way. It gave me confidence and made me feel safe as I lived my life, got serious about my profession, made decisions about relationships.

Pain has wiped a lot of that out. My physical perceptions are often nuts—lights are so bright, and so many sounds are nothing short of an assault. I avoid children because they screech and howl, and sometimes I judge them for it. Camping with my niece and nephew, I knew pain was getting close before I actually felt it because the kids would bellow. “You’re no fun when your head hurts,” my niece said when I told her to dial down her (objectively) nasty harangue of her little brother. Worse, I look askance at exuberance because if I get too close to loud, happy people, it will feel like daggers in the back of my head. But these aren’t so important, light and sound. What I worry the most is that I can no longer read people accurately.

Before I hit my head, I’d become someone who really loved people. After two depressive, self-involved decades where I was paranoid and easily irritated, by my mid-thirties, I was finally medicated for depression, had enough therapy to really know myself, and it turned out I was fairly extroverted after all. I ended up in a very social career, I had a lot of really amazing friends, and my relationships with my family members seemed on the mend.

Pain has turned that upside down. Now I’d consider myself an introvert, and the social aspect of teaching is the hardest when the pain is bad. I often can’t think straight, so I have a hard time making sense of some family and friend relationships, and some have ended. I no longer feel “right with the world.” I miss that. I want it back.

I’m banking on this surgery being successful. Yesterday I started to feel dread for the upcoming winter, and then I realized it might not be so bad, because I might not be in as much pain. In objective terms, I might have a good five extra hours each day, hours that are currently compromised with pain and/or medication. I might be in a good mood most of the time. I might enjoy spending time with people again. Yes. The surgery will be worth it.

Change of Venue

I was scheduled to get a trial spinal cord stimulator implant this Friday. I've had serious misgivings about it, a sense it wasn't the right thing for my pain, along with a lot of fear about wires in my spinal column. I have occipital headaches caused by damage to my neck. My pain management doctor had wanted to try an occipital nerve stimulator, but my insurance wouldn't cover it. Recently my spine doctor's partner strongly suggested I try a spinal cord stim instead. He said running the leads across the nerves coming from my neck would block the pain to my head.

But today I had an appointment with a neurosurgeon at Jefferson who was recommended to me by yet another doctor. He's done a zillion of both types of stims. He said the spinal cord stim would be waste of time for my kind of head pain, and he's nearly positive his staff can wrangle my insurance to cover the occipital stim, which he says is really the only way to go.

Here's a short news story about how the thing works. The girl has migraines, not occipital neuralgia like I have, but it's the same procedure.

He was one of those rock star docs who blows you away as soon as you meet him. He has a serious cv, major publication, teaches at Jefferson, does research, and has been in the stim game, among other things, for a long time. I was really psyched to meet him.

But some of the stuff he said was a bummer: my neck is super messed up, especially for someone so "young." He asked if I'd had an accident or some major trauma to my neck. I told him the only explanation I have is the Lyme disease that hung out in my neck for three months in 2001. There is no way to fix what's going on, just manage it. If the stim doesn't work, the only recourse is to keep taking pain meds and wait for technology to produce a better pain management technique (and he says there are a lot of exciting things under development).

I'm going to go ahead with the occipital trial on July 1. I feel a thousand times more comfortable with this than the spinal cord stim. It's still pretty gnarly, but I won't have wires running up my spinal column, and the leads will directly touch the nerves where I have this miserable pain.

Meanwhile, I had a solid week of greatly reduced pain after the trigger point injections I had last week. I'm going to get more aggressive ones in two weeks. I'd had a feeling that was going to work.

I think I'm learning that I have good instincts about all of this. The last procedures I dragged my feet over was my inpatient stay at Jefferson last summer. I almost cancelled a million times. I had actually scheduled it for early summer and backed out. And guess what? It failed, and it sucked while I was there.

But there's the idea that you really do have to try everything. Part of that is just common sense, and part of it is superstition, like I'll be punished and in pain forever if I leave a stone unturned. I confess that I STILL can't wrap my head around the idea that this can't be fixed, permanently. I had a tiny hope that this guy today would tell me about some procedure that I'd never heard of that would be the magical solution.

He asked me to fax over a timeline of all the procedures I've tried. He said it's good that insurance sees all the things I've failed. "And you," he said, "have failed EVERYTHING."

What it is.

It’s the same, that’s what. Better on the days when there is sun. But today was a fail in that the med that doesn’t mess me up (hydrocodone) was completely ineffective, so I had to resort to the wreck-me med (tizanidine, a muscle relaxer) and I ended up in a deep, sad, garden-and-woods-avoidant sleep for most of the afternoon.

Next week I get my spinal cord stimulator trial put in. YUCK!!! The last time I went to my spine doctor, everyone jumped all over me with enthusiasm about this procedure they think will be "a real game changer!". Last year, I'd investigated an occipital nerve stim for the back of my head only to find my insurance doesn’t cover it. The spinal cord stim would run wires up the epidural column of my spine, settling the leads in the upper neck across the nerves that send pain to my head. I’d have a remote control, and the idea is when I'd start to feel pain, I would “cancel” it with an electrical jolt. A nerve can't transmit both pain and electricity at the same time, apparently. This could be awesome. Or it could cause a bunch of problems. The good thing is that there IS a trial first, which I’ll have for about five days (no showers; thank you, dry shampoo) to see if I get at least 50% pain reduction.

Otherwise, I’m still taking narcotics. Right now I take long-acting hydrocodone, called Hysingla (which doctors seem to prefer), along with the short acting version I’ve always taken. The Hysingla is basically useless. I take just as much short-acting hydrocodone as I did before. And it’s less and less effective, which means, truthfully, that I need stronger meds.

If you’ve been paying attention to the news, narcotics are having a tough time right now. In response to the opiate overdose epidemic across the country, the CDC has issued new physician guidelines that make it much more difficult for chronic pain patients to get proper pain management. To me, they are draconian, even cruel. 

Out of the 29,000 opiate deaths last year, it’s not clear how many were from heroin and how many were from prescription drugs “An overwhelming majority of such deaths — more than nine out of 10, according to data from New York City — involve mixtures of opioids with other drugs rather than straightforward overdoses” (NY Post). Yet the popular belief is that most victims were legitimate patients, prescribed narcotics for an injury/surgery, and then went head and got hooked. Damn those doctors. Actually, this is a fallacy. Most pain patients do NOT become hooked on their meds (it’s estimated that of chronic pain patients treated with narcotics, only 3% will get addicted. For people with no history of drug abuse, only 1% will get addicted). And most people overdosing on narcotics did not get them with their own prescription; they either take someone else's pills or buy them on the street. Yet the CDC feels it needs to drastically limit access for people with chronic pain who use their medication responsibly. I am furious. Actually, I have great doctors and an extensive history of failed treatments that mean I will probably never be denied pain medication. But so many others will be. Some days I feel like writing a zillion articles as an activist, making this my cause. But I just get so angry at the stereotyping, Anderson Cooper shaking his head as he interviews addicts and addiction specialists. Pain patients are not included in this conversation. I myself was interviewed by the Philadelphia Inquirer a few days after the CDC guidelines were released.  Read how my concerns were dismissed. I’m sorry people are dying. I’m sorry Oxycontin was initially advertised as safe and way over prescribed,  and then hit the streets like a tornado. But frankly, that has nothing to do with me, or the millions of chronic pain patients who use our medication responsibly.

Here’s the thing: I’ve been sober for 24 years. I’ve taken narcotics pretty much daily for two years. I’ve never felt euphoric or had any desire to abuse them. A successful day for me is a day where I don’t need pain medication (but those days are rare). Certainly I’ve known people with long-term sobriety who relapsed on pain meds. But they are the exception, not the rule. We just never hear about them. Am I just lucky? Or do I not in any sense want to get high? Or are opiates just not my jam? Probably a combination.

Of course I don’t want to take them forever. While for me they have the least side effects of any of the twenty-odd meds I’ve tried in the last four and a half years, they are not what I want for my life.

I don’t worry about overdosing. While Prince’s death was a punch in the stomach (and my own imagined narrative was that his pain was uncontrollable and he was taking more and more Percocet and getting no effect), I can’t stand the over-opiated feeling. I get nauseous, dizzy, and very irritable. In general, I worry about what this is doing to my body long-term. Opiates inhibit the body’s natural ability to process pain (basically decreasing dopamine receptors).  Additionally, long term use can lead to depression. Finally, opiates lose effectiveness (as hydrocodone has for me), and patients “graduate” to stronger and stronger meds.

So I am always, always trying new thing. This week, it was trigger point injections, needles into the knotted muscles in my neck that compress the nerves that cause me so much distress. I was so jazzed about this treatment that I almost called off the stimulator trial. When my doctor first suggested the stimulator, I was all kinds of cheerful and funny about it—people thought I looked like the Bionic Woman when I was a kid; now I’d actually BE a bionic woman. But as the date for the trial implant draws closer I find the whole thing much less humorous. This is my spinal column, for god’s sake. If the trial works and I get the permanent implant, there is major scarring, particularly where the battery would be implanted in my hip. There are all sorts of things that can go wrong. But honestly, the biggest inhibition I have toward this procedure are the physical limitations for weeks to months afterwards: no swimming, no yoga, no bending or twisting (which means no camping)—basically, bye, bye summer. So I was psyched to get the trigger point injections and perhaps avoid all of that.

But the trigger point injections only lasted 36 hours. So I didn’t cancel the trial. I’ll go ahead and get the temporary implant next Friday, try it for a week, and if it works, I will think about when to get the permanent. Summer makes me so damned happy, especially these last few days of sunshine, which I spent in my garden, arms scraped bloody from pulling vines and muscles sore from stapling up a deer fence to keep mister enormous groundhog from devouring my Swiss chard. The previous weeks and weeks of rain were hell for anyone with arthritis/join pain etc.  Hydrocodone was not helping much. I spent far too many hours in a tizanidine coma. Wish me luck next week—I’ll be awake for the implantation, though “mildly sedated.”

So what else is down the pike? I have a consult with another neurosurgeon next week about possible nerve decompression surgery. Then I’m getting blood work to find out whether I have any nutritional deficiencies that might inhibit the way my body perceives pain. I’m a well-fed vegan, but I don’t take supplements or pay particular attention to vitamin b-12 or amino acids. I'm starting a new type of cognitive behavioral therapy that should help me develop new ways to think about pain.

And in about eighteen months, Pennsylvania’s medical marijuana apparatus will be in place. While I have no issue with medical use of pot in terms of my sobriety (i.e. I would not consider it a relapse), the truth is, I hate HATE being stoned. Always have. I get anxious and unhappy. But I’ve read a lot about CBD oil and its applications for pain, and how some strains are low in THC. I’ll definitely be in line when the dispensaries open.

In the meantime, I’m teaching a double class all summer, basically great people with the exception of at least one potential problem customer. I’m determined that the class will be enjoyable and relaxed (although still an ass-kicker). The sketchy student added the class late, and I was crossing my fingers that he might not get in, but he did. He is VERY high maintenance, doesn’t follow direction, offers comments that go wildly off topic, glares at me if I gently correct his work, and stays after every single day tell me how serious he is about college. Luckily I usually quickly figure out how to handle students like this, keep him from hi-jacking the class and zapping all my energy, while still benefiting from the class.

My garden is growing, the pool club is waiting, new short stories are brewing, and my tent beckons. I spent too much time on the couch last summer, and I’m not doing that again, no matter what it takes.

I've lost control of the narrative

It’s been falling apart in recent weeks. Pain is taking over everything, and it’s so bizarre to watch my life narrow, things that used to be important just falling back like dead leaves. I feel so much guilt for what abilities I’m losing—participation at work, this last chapter revising a novel that’s really important to me, connections with friends, you get it. This has never happened to me before, losing so much because I am just unable. Pain takes up so much time—today I decided it was like a bizarre, frantic child waving her arms and screeching in front of me as I try to walk down the street. Medication can push her to the side of me and even behind me for an hour or two, but then she’s back in front of me, and I can’t see or hear anything else.

Interestingly, I still find emotional pain far worse. I had an awful dust up with some of my family over the holidays, and I came home and fell into the darkest depression I’ve felt in decades. It lasted for a few weeks, and it was so much worse than physical pain. There was no screeching child, just a deep well of sadness and self-loathing that scared the shit out of me. I was nearly inert the whole time, and cried a lot. It slowly got better and is mostly gone now, and I get a perverse happiness when I think that today my physical pain isn’t as bad as that.

Tonight I just want to write about what this is like, and I’m I a good amount of pain right now, which I think is the correct time to try this. I taught today, only a few hours, and the pain was strong but workable, beside me. I took a few Vicodin throughout the day, but they don’t really work anymore, and I think that if they tamp it down a little for a few hours, the pain comes back with more of a vengeance than if I hadn’t taken it. And that fucking sucks.

By the time I left school in the afternoon, pain was full-on, and as I drove Kelly Drive, pink blossoms on the trees, I felt so half alive, pain like a shroud over me, tempering everything. There was some traffic, Friday rush hour, and if the pain was a 4 or a 5, I’d be so agitated, honking, trying to maneuver around everyone, my perceptiosn distorted as they are with the pain, thinking everyone was an idiot. But today the pain had passed the agitated stage and, close to a 7 now, was silencing, completely sobering. As I’ve written, occipital neuralgia is very localized pain, maybe two inches in the back of my head, radiating out my eye. It’s not full body pain like some people have; it’s not a bone ache; it’s not hellish muscle spasms. It’s just this sharp sharp line of hideous sickness in that two inch space, nerve pain, and today it dwarfed me, and in my car I was dulled, half dead, no sensation available to my body but this two-inch line, and in my head, knowing there was so much else to think about—story collection published with friends, lessons for next week, dinner tonight, Easter, my book, the garden—it was all there, way back in my head, and I felt deep sadness that I couldn’t reach it all, because all that was there in front of me was pain.

My body stunned as though cattle-prodded, my mind fell into the usual loops—this medication, take up the dose, make my insurance consider the surgery it won’t cover, call this neurosurgical practice that does peripheral nerve procedures, sleep when I get home, use the TENS unit or maybe heat, call the pain doc about trying the extended release morphine again, this time a higher dose, because the days I tried it last week were a complete failure, no help at all and then the meds that do help wouldn’t work on top of it, and then just think about that for a minute—fucking morphine wouldn’t work. Morphine, used in wars for decades, serious serious drug, drug for the end of life with cancer, drug to end the suffering, morphine for this is a total failure. How can that be? I drive up Henry more traffic and it doesn’t matter because I am so resigned now with this pain going home on a Friday afternoon, going home to nothing, no plans, just pain, that’s the evening, no nothing, no movie no dinner out no friends, no cozy time with my husband, just pain alone inert fetal ugly.

Inside the front door there they are the absolute loves of my life, husband and dog, both happy I’m home, especially dog, and I drop my keys in their spot and I look at my husband with dead eyes and tell him it's bad today its awful, and I don’t know what that does to him, how he hangs on with me because I am such a fucking drag, all I do is have pain talk about pain, talk about  treatments, talk about drugs. I don’t know where is he with it because he is far away from my little ball of self-absorption, self-obsession, and somewhere in there I have fear I’ll lose him but I can’t really hold that fear because pain takes up too much room.

Dog and I go outside to the couch on the porch and I call my pain doctor’s practice and get his colleague; all the pain docs there are young and smart and very kind and thorough on the phone; they never rush or condescend. I ask if I should maybe try the morphine again—my actual pain doc wants me off the short acting hydrocodone I take and on a 24 hour extended release narcotic, but I tried Nucynta a few weeks back and now this morphine that didn’t work. I ask if I can go up on the morphine, knowing in my heart that it won’t work even then, fucking morphine won’t work, given for gunshot victims, writhing-in-pain cancer patients, it won’t work on this two inch piece of shit pain in the back of my head.

He says he can’t recommend upping a narcotic dose on the phone. Then he says something I’ve never heard, says it in his young, smart voice, “the thing is, for occipital neuralgia, narcotics kind of suck.” And I know he’s right; narcotics for this pain worked for maybe a year, but now they're not working, and the extended release isn’t working and it’s just the wrong pain for those drugs. “So what else?” I ask, and he says, “it’s just that occipital neuralgia is really hard to treat,” and then he pulls up my chart and asks as he reads it “have you tried, oh yeah, you’ve tried, yeah, you’ve tried” and then he says maybe I should give gabapentin a shot again; it’s the first line for nerve pain. If not that he can call in Lyrica which I know makes people fat, but these days in the bandwidth I’m losing, things like weight are so distant, outside the bandwidth, one of the things that don’t matter anymore when pain is so central. So many things are outside the bandwidth, like fucks I could give, places I wanted to visit, the bike, all fading back because the pain is the screeching child and how can you focus on anything else, how can you clean your house, look at a recipe, give two fucks, get that dent in the car taken out.

But I smile on the street and I chat in the halls at school and I put every fucking thing I have into the classroom and I know I’m erratic in my energy because of medication but somehow I can get into my own internal medication, adrenaline, and feel it surge through me and make it possible to teach, to stand up there and be enthusiastic and encouraging, and funny, make those jokes when attention starts to flag, bring Trump into it, that’s surefire, and yes, run on sentences I copied from your last papers, and here’s the format APA requires on the references list, and The Grapes of Wrath, I feel my absolute love for that book still, it's inside the bandwidth, and those beautiful faces of my students, what they bring to the classroom, the very best of themselves, and they work hard, and some of them have horrible pain too, mangled arthritic hands and degenerating spine, and those students have my heart, but really they all do, sitting in the same seats they always sit, making friends with the ones beside the, I'll let you guys pick the groups, no more than three, here it is, the list of questions, hope you annotated the article well because if so the questions will be a piece of cake.

Shit yeah the pain is there but the adrenaline marches forth beside it and puts its arm out to keep the pain from moving forward into the street, and yes it’s hard, of course it’s hard, the pain is there and I hate it so much, do I ever say that how much I just hate it, it’s there, but I can smile and see the light in their eyes, and keep it together for the hour and the next and then I am done. As soon as the last few leave and I am wiping the board and shutting down the computer, the overhead, it’s fucking back, full on, and what the fuck.

The doctor on the phone says try the gabapentin and I see you have an appointment next week with Dr B, he’ll talk about the morphine then and I thank him and I get off the phone.

Inside the house my beautiful  husband is writing as he’d been doing all day, his day off, and there’s jealousy because my writing is so far back there, so far outside the bandwidth right now, like a bathing suit in November, just inappropriate for the season. My husband, my advocate, lets me cry, which I rarely do over all this, a few times a year, but today I am so fucking frustrated. Hydrocodone has abandoned me, morphine has turned its back, there is nothing for this pain anymore, and I am sick with how much I can’t get done. In my former life,  I saw myself as competent, as able to juggle so much especially at school, and I am dropping ball after ball and it is terrifying like I’m falling into pieces and I can’t do it anymore, I have the room only for teaching, I now my teaching is still top notch or I would make myself stop, disability, it’s solid still, but everything else is crumbling, and this isn’t me now the person I built myself to be, years at this school, 23 years, and I want to be a leader among faculty. I want to finish the book and try to sell it full steam. I want to be able to do so many things and just fucking can’t. I’m crying and my husband says stop. You have to look at this a new way. You are looking at this as your failure, like you are inept, failing, but that’s not what this is. You are sick. You are sick and you can’t do what you used to do right now. You just can’t until they get the pain under control and that is okay. No one can ever fault you for that, you’ve done so much at the school, been a leader before, juggled many balls at once, and it this point in your life you just can’t because you are sick.

He’s right, completely. It's meant as a comfort, and it is. It scares the fucking shit out of me because it’s a sickness with no end date, no cure. Julie O--- isn’t impaired. Julie O--- isn’t limited  in what she can do. Four and a half years ago, before pain happened on me like a personal biblical plague, I was so happy. I was finishing my second novel and sure I would sell it and happy with some changes in my work at school, and connected and in love with my husband, and I had nothing to complain about, nothing at all (of course I did I complain all the time because I am a whiner, but it was picayune stuff). If I’d gone forward since that time, upward without the pain, I would have just been a better version of Julie O---, published book, maybe, strong, more fit, more projects at school, the circle ever expanding.

Instead this.

The doctor sad you still have a bunch of gabapentin, go ahead with the dose you stopped at (600 mg 3x a day) see what happens or I’ll call in Lyrica.

I took the gabapentin, and my beautiful husband and I ate rice rolls I got from the truck at school, and they were good, and I said you know what? I feel like a soak in the tub and then I’m taking Buddy to the dog park. But inside the bath reading my iPhone, my eye phone, some intense exchanges on Facebook, and then my sight got blurry, and I’m so sleepy, incredibly sleepy, so I text my husband downstairs I’m going to nap a bit and I crawl into bed.

As soon as my eyes close the movie begins—it’s not my imagination—this is something outside of me but inside my eyes, and it’s a camera moving just for me, over the landscape, some craggy rocks, then hills, then it’s my own backyard, down and out a window that we don’t have and I think, oh, we need this window right over the garden, and the camera takes me out over the garden through the grass and into the back and it’s wheat and tall grasses and they blow in the wind gorgeously and I think this really isn’t my yard, or maybe it is or it could be, and the wheat and grasses grow and sway and the camera sweeps over them, sensuous, and then the scene changes and it gets more craggy, rocks, and warriors, benevolent, ready to fight an unseen enemy, and it’s Game of Thrones, it’s so beautiful, a beautiful gift of the medication. I open my eyes and it’s my regular room, so I close them and I’m back with the camera, and there’s nothing bad at all about any of this, not a bad side effect, and I know I took way too much, the doctor was wrong in telling me to take the high dose I left off at, but it’s okay, nothing bad is happening, and soon I’ll be asleep, no more dual consciousness, and when I wake up it’s dark outside and the pillow is wet.

A TV show downstairs with my husband, a cheesy one, and he’s off to bed exhausted because I’ve been terrible to sleep with the last few night, and he has to work in the morning, up at 4:30.

And I’m awake. Pain is back, the gabapentin, who knows, it takes a while to work in the body I hear so I guess I’ll keep taking it, but I’ll cut it in pieces and start slowly like I did before, titrate up because I can’t be hallucinating when I close my eyes.

It’s been an hour since I started writing this, and tizanadine and the TENS unit have taken the pain way down til it’s behind me. And that’s good because in a minute I’m going to have to edit this mess.

And oh yeah on Sunday I’m going to be in an article in the Philadelphia Inquirer about the new (draconian, garbage, horrifying) CDC guidelines for prescribing narcotics. I’m terrified about this article, about being so public, even though I want to be that example of a normal, successful, high functioning pain patient on narcotics (the reporter found me from my facebook post). That example has to be out there, standing beside the stereotype of people stooped in pain, disability, walking canes, or just junkies.

And haha the irony I’m going out on a limb as an activist for narcotics and fucking narcotics don’t even work for me anymore. Ain’t that some shit.

Upcoming: fourth round of Botox (hasn’t helped at all and hate the way it drops my eyebrows), pain doctor  next week to discuss another extended release narcotic, consultation with the neurosurgeon at Lankenau. Yoga.

Yoga is new in my life and it helps me. My teacher used to be a Daily News crime reporter, and she is the most amazing yoga teacher for me I could ever dream up. I’ve missed a week and a half of class because of travel and this sickness, and my body feels it, now craves it. Going Sunday.

And now I feel queasy about letting you see this post. In my heart of hearts I am disgusted by my facebook whining about pain, how much I talk to my friends about pain, but you know what? It fucking helps me so much. So I’ll put this on my facebook, maybe for all my “friends” to see or maybe just close friends I’ve grouped together, but really I want to make it available for all my 700 or so friends in the event that someone reads it and has an answer an idea. Earlier a friend said her friend has my same shit condition I have and a butrans patch has been magic.

So after a week of my big drama queen CDC post and then my crying with my dog post, when I feel so “look at meeee” it makes me sick, I’m posting this as well. Because this pain makes me selfish as shit, and it helps me beyond measure to know you are reading this.

Get thee behind me, Satan!

My headaches are bad. I’ve been in an unexplainable flare-up for about three weeks, and they are stabby-bad. They feel like a screwdriver has been plunged in at the base of my skull, and the tip is coming out my eye. There is no rhyme or reason: stress or not, enough sleep or not, sugar/caffeine/diet coke or not. It’s pretty frustrating.

In late August, I did the lidocaine infusion in the hospital. I went in feeling optimistic, brought along lots of school work, books, entertainment, and had every intention of making it work. I had a PICC line put in my arm and got loaded up with tons of lidocaine and other stuff. My headache went away pretty quickly (I’d come in un-medicated, with a good seven or eight on the pain scale). But the lidocaine made me simultaneously exhausted and want to crawl out of my skin. I couldn’t read, watch TV, or stay awake for visitors because of that, and I couldn’t sleep as much as I wanted to because nurses were in changing my meds or giving me shots every four hours. Everyone was incredibly nice, but I was miserable. The freaking smell of hospital food. . .

Anyway, they let me out after 48 hours (they want you to have at least 24 hours headache-free) with a stack of prescriptions to try. They called it a success. Once I got home, I had four days without pain before it came back with a vengeance. Not a success.

Since then, I’ve done another round of Botox (useless, but now my doctor says it may take four rounds before it works), tried all the new prescriptions (they have failed), and had nine visits with chiropractor number 7 (didn’t help). I’m getting towards the end of a tough semester (just tons of grading—awesome students). Most days I get by with Vidocin, but some days it doesn’t work, and those days are brutal.

I have mixed feelings about narcotics. First and foremost, they are saving my life. There’s no way I’d be able to work if I didn’t get a break from head pain. And I admit, the days I don’t get a break get very, very dark. I don’t think I could stay alive if this pain was constant. I don’t think many people could. In addition to the pain, I am just very angry and caustic. It’s very hard to be in the world. I want to flip out on people for their loud voices and bright headlights. I can’t think straight, can’t grade, and just want to be in the dark silence, alone. So thank god for Vicodin. I have virtually no side effects from it, no loopiness or sedation, and I can function very well.

But then there’s my sobriety and an inferred judgement from those unseen, even though I’ve never once taken these drugs for anything but pain. The idea of judgement bothers me less and less as I see how essential Vicodon is to my quality of life, and my livelihood. But in the last year, Vicodin became a schedule II drug, and doctors are not thrilled about prescribing it. I understand that in recent years, the rate of ODs from pain meds has skyrocketed. I understand that we need to get a handle on it. But as a legit pain patient, I resent having one doctor in a practice that “doesn’t believe” that narcotics help headaches like mine, another doctor who “might be willing” to prescribe them for me, and the third who actually prescribes them does so begrudgingly, as though she’s doing me a big, fat favor. I have pain. These are the only meds that work. What the hell else am I supposed to do?

But I don’t want to take narcotics forever. So I’m looking for more treatments. I have cervicogenic headaches, meaning my headaches start from problems in my neck, but the actual nerve condition I have is occipital neuralgia. The narrowing/bone spurs/arthritis in my neck impinges on nerves that send signals to the occipital nerves at the back of my head. My actual pain is about one inch in diameter, the handle of the screwdriver, and then it radiates to behind my eye.

There are neurosurgeries that may help. This is considered a peripheral nerve disorder, along the same lines as carpel tunnel syndrome. My doctor at Penn Pain Management said that if Botox didn’t work, he wanted to implant an occipital nerve stimulator. Basically, it’s an electrical lead placed over the nerve, connected to an implanted battery pack in my chest. I’d have a remote control and could sent a current over the nerve to block the pain. I’m in a Facebook group for this and I read with interest many people’s accounts of what a miracle it is. But I also read about infections and slipping leads.

Then there’s nerve decompression surgery, where they pull the nerve out of the muscle in the back of the head so nothing’s impinging it. I’m a good candidate for both because I’ve had lidocaine injected into the occipital nerve on several occasions, and it has successfully blocked the pain for a few hours.

But these procedures are risky, and if they fail, they can make the pain worse. The rhizotomies I had last year where they tried to kill the nerves by cauterizing them have absolutely made the pain worse—much sharper and more intense. So that scares me. I’m going to have a consultation with a neurosurgeon in a few weeks so I can get more information.

But in recent weeks, I’ve had to take more Vicodin to control the headaches. If I take doses too close together, I get seasick and that’s such a gross feeling, dizziness and nausea, actually worse than pain sometimes. I could step up to a stronger narcotic. My primary care doc thinks I should do an extended release drug, or a fentanyl patch. But then what—the pain gets worse and I take stronger and stronger drugs? Hard to imagine.

Dear reader, what would you do if faced with such a decision: surgery or narcotics? It would help me to know what you think. All of this is so wacky and strange. I can’t believe I’ve tried all these treatments. I can’t believe all the drugs I take. I can’t believe this is STILL going on, that hitting my head four years ago is still fucking up my life. It makes me feel more normal and grounded somehow to hear my friends tell me what they would do if they were in my shoes. So let me know!

Botox and Lidocaine

It's August. I am deep in summer session grading, lamenting the fading season, and eating the most fantastic tomatoes from my garden.

I have a line-less forehead, and that deep, pissy furrow between my eyes is gone, My eyebrows are now straight lines, no arch at all, and my eyes have dropped a little bit. No one notices but me, and it's hard to put on eye makeup. Three weeks ago, my neurologist put 31 shots of Botox all over my head. It's maybe helping, but not really. It hurt like hell, and the little pop sound the needle made each time it pierced the skin was just gross. I said fuckfuckfuckfuckfuck until she was done. Supposedly Botox only really helps headaches the second or third round, spaced three months apart, so I've got some time before I can expect much.

My doctor also doubled my Indocin, and that's definitely helping. It's a super strong NSAID that so far I am tolerating well (it has really harsh side effects--causes major stomach issues and increases the risk of heart attack, liver failure and other goodies). Most people can't stay on it long-term. But according to my headache journal, it's made a difference:

During the two weeks before I doubled the Indocin, I had 1 day with no headache, 3 days with 1 headache, 5 days with 2 headaches, and 4 days with headaches all day.

In the two weeks since I doubled the Indocin, I've had 6 days with no headaches, 5 days with one headache, and 4 days with headaches all day (including 1 or 2 days where I forgot to double the Indocin because I'm an idiot).

This is pretty  improvement. Six days out of fourteen with no headache is a record. It's the four days with headaches all day that still suck, especially since they are usually days I am teaching. So I'm going to do the inpatient treatment at Jefferson Headache Center, five days in the hospital with a PICC line pumping lidocaine 24/7. The idea is to "break the pain cycle" with a super crazy amount of anesthetic. Several people in my Facebook headache group say it reduced their overall pain levels a lot and also made their meds work better. Other people said it was a waste of time. If you remember, I was scheduled to do this in early June, but I backed out because it seemed insane. It still seems insane, but now that I've been back in the summer session classroom with pain to remind me how much that sucks, I have to give it a shot.

There is no aspect of the hospital stay that I'm not dreading. It's my one last break before the fall semester begins, and I'd really rather be at the pool/the shore/in the woods/one my porch watching hummingbirds. I hate being apart from Buddy for half a day, let alone most of a week. I'm scared the PICC line is going to hurt and be hard to sleep with. You have to stay in bed the whole time because of various heart monitoring apparati, and I will climb the walls. I'm terrified of the hallucinations that everyone says are really common with lidocaine. My days of willingly hallucinating are long over.

More than anything, I'm scared it won't work. Truthfully, I'm pretty sure it won't work. Okay, I know it won't work. But I'm doing it anyway.

I'll be productive in the hospital. I have lots of school prep to do, plus my own writing/sending stuff out, plus reading, plus binge-watching some show or another. Maybe Friday Night Lights finally? Other suggestions? My awesome awesome husband will visit a lot and bring me food (I'm not expecting much vegan-friendly hospital fare). Maybe I should get seed beads and make some necklaces. My mom and some friends have offered to visit, but I have a feeling I might be feeling too yucky. Especially if I'm hallucinating.

Maybe it will help. I have a busy fall semester ahead. I would love to cut down on meds. It would be great to have more pain-free days. October will be four years with these stupid headaches, four years since I walked into a steel beam head-first and saw birdies. The days where I have one or two headaches are easy--meds to the trick. The all-day days are almost comical anymore. On those days I take meds and they don't work. I take some more, and they don't work either. Some days it's enough to knock out a horse, but on me, the meds do nothing. I use my TENS unit, I use heat, I take a nap, I cancel my plans, I walk around the supermarket holding my head. I have no idea why a day like this happens, and it almost never happens twice in a row. It's just that when I'm teaching, then it's not comical, and I hate being upright and I hate how hard it is to be enthusiastic, kind and patient. It's awful.

So cross your fingers the lidocaine does a bit. I'll check back here once I'm in the hospital (August 24) and report on the experience.

The Lineup of Upcoming Treatments

I saw my pain management doctor at the University of Pennsylvania the other day. He’s emerging as my favorite now—he has read my entire record of headache treatment, spends a ton of time with me, and is, well, a Penn doctor, which means he’s top of the line and his practice is connected to Penn’s research on chronic pain.

He had a lot to say.

First, to him I am not a headache patient, but someone with chronic pain. He can’t pinpoint why I have it, or why anyone else has it. Maybe my neck damage, maybe my head injury, maybe something else. He says medicine is pretty stumped about the causes of chronic pain. As for treatment, everyone responds differently to everything, so they just keep trying different things until something works.

He brought my records into the exam room. “You are unusual,” he said. “You’ve tried everything. Most people with chronic pain aren’t nearly so motivated.” That gave me a mix of pride and despair. He said had I come to Penn when the headaches first started, he would have tried everything I’ve already tried. So I’m advanced.

So what’s left? He came up with a treatment plan. Attempt the first thing, and if it doesn’t work, go to the next. I’m glad there’s a plan, although the contents of it are a little weird.

I’ve written this before: as this saga continues, treatments that seemed completely insane start to seem viable, even desirable. It took me a year to wrap my head around the idea of getting nerves burned in my neck, and then I went ahead and had it done twice last year. Desperation is the mother of acceptance.

I’ve cool with the first thing he wants to do, but the rest. . . not yet.

First, I’m going to get the full headache protocol of Botox. I had a few shots in the back of my head two years ago, and they worked perfectly the first time (three pain-free months) but then never again. This time I’ll get 31 shots all over my head. My Jefferson headache doc very lamely did not order them for me as she said she did, so my Penn doc is finding someone at Penn to do them (it’s a neurologist’s treatment and he’s an anesthesiologist).

The first time someone suggested Botox, I almost laughed. It sounded insane—paralyze all the muscles in my head?! Now it sounds great. Lots of people in my headache group have success with it. (BTW, Facebook groups are amazing for things like this. There are 4,000 members in my chronic daily headache group, and it’s been so good for me. I can ask a question and get a dozen responses in ten minutes. I’ve learned about so many treatments, and gotten a ton of support. I used to believe internet “friendships” were bullshit, but I’ve made some really nice connections with people. There are FB groups for just about everything, and I highly recommend them).

I wish I could have had the Botox weeks ago, when the Jefferson doc first suggested it. Had she ordered them two months ago, I would have. Had she ordered them a month ago when I found out she hadn’t the first time, I would have. They take a good week to work, and second summer session, where I teach two classes four days a week for seven week, starts in ten days (for you non-college teachers, this is a heavy load. Lots of in-class time and many, many hours of grading).

Then, if the Botox doesn’t work, we go on to treatment #2, which is harder for me to consider. This would be the occipital nerve stimulator (video of the procedure—not for the squeamish). A lead is implanted in the back of the head over the occipital nerves, which is the center of my pain. Wires are run to the shoulder into a battery back. A remote controls the electrical impulses, which block pain signals. It’s like an internal TENS unit, if you’ve ever used one. They do a trial first by inserting a temporary lead for a week to see if it works. This is all surgical, fairly invasive, and right now it seems fairly insane. But I’ve heard lots of good reports on it. My doctor says if it works, it works completely. It would eliminate the need for meds, which would be awesome beyond belief. When I was a kid, people said I resembled the Bionic Woman. If I got this, I’d resemble her even more.

The last treatment up to bat if we still aren’t winning the game is methadone. You know, the stuff they give hopeless heroin addicts. I’d be on a daily dose for the long term, not just for flare-ups. This one seems nuts because then I would be a physically dependent opiate user. Methadone is hard on the bones, and I might get used to one dose and have to get ever-increasing doses.

But I respond well to opiates. I don’t get loopy from them at all—they act like a cup of strong coffee. I’m never tempted to abuse them because a) I have an awesome life that I want to preserve and b) they make me sick as a dog beyond minimum doses—dizzy, heart pounded, nauseous and crazy-anxious. My doctor isn’t a fan of regular use of short-acting narcotics like Vicodin, which I’ve used when I have extreme flare-ups. For chronic pain patients who have failed all other treatments, this is the final stop.

It’s very hard to wrap my head around it. I’ve had addict friends on methadone maintenance, where they go to the clinic every day and drink the Tang-like dose. I taught GED classes in a methadone clinic. My students could barely function after their dose.

My doctor says at Penn they work to get the exact right amount for a patient’s pain. It doesn’t get a person high at all, just tamps the pain down. Once they get the dose right, they turn the prescription over the primary care physician. New laws require monthly check-ins and monthly prescriptions.

Oh, and he thinks the 5-day inpatient lidocaine treatment that Jefferson wants me to do is bunk. He says to go ahead and do it if I feel like I have to, but he thinks it won’t work. I’m not sure what I think. If I get the Botox in the next few weeks (it takes a while for insurance to approve it) and it doesn’t work, then I’m at a crossroads. Implanted nerve stimulator or inpatient for five days? Tough choice.

Finally, I am done with physical treatments. It’s been five days since that chiro adjustment, and I’m still in a ton of pain. Vicodin is only helping a little. I’m pissed. No physical therapist or chiropractor has ever not made the pain worse. I have dreamt of a physical fix since this whole thing began, but I have to give up on that dream. My nerves are too reactive. It sucks.

I just really really really wanted to be in a solution before school starts. That’s not going to happen for summer session, but I need relief for the fall. I’m teaching a heavy load and one really intense fiction writing class. The thought of headache teaching makes me want to cry. It’s awful. It’s a perversion of the career I love.

Thanks for reading. I don’t know who you are since no one ever leaves comments, but your invisible support means a lot to me.

Hey, could you try to leave a comment? I'm not sure the comment feature is working. I've tried to adjust stuff, but it's hard for me to tell.

BTW, If you are new to this blog, I've tried:

Accupuncture

Yoga

Herbs

Creams

Myofascial release

Biofeedback

5 chiros

7 physical therapists

Nerve blocks

Nerve burns

Trigger point injections

Many, many meds

Basically anything anyone has suggested to me. I am not joking around here.