Pain changes us.

It's been twenty days since the rhizotomies, and for the last week, the pain has been pretty severe. From what I read on discussion boards, this isn't uncommon. Many people report "angry" nerves for about a month, a sharp increase in pain before the nerves shrivel up and die.

As I've said, my doctor gave me Percocet for after the rhizotomy. I've been super careful, and at first, I only needed 5 mg here and there. For a few days, some carefully-spaced-out Alleve was like magic. But since last Wednesday, I've needed more medication than I can handle. The pain is in the 5-7 range, burning, searing, and it is totally in my way. Far from getting me high, the amount of Percocet I need to manage it makes me sick—super dizzy, nauseous, restless, shitty. My heart feels like it's pounding out of my chest and my ears get stuffed up. The Percocet pushes the pain down but makes me feel the worst kind seasick. I hate it. 

In the next four days, I need to grade 95 papers (some 15 pages in length), host my school’s creative writing and photography magazine release party as I’m the faculty advisor, and attend my college’s graduation which, from robing to dis-robing, is four loud, crowded hours long. The graduation I can beg out of in an emergency. But I have to grade the papers, and as I’ve written before, pain makes some levels of focus nearly impossible, and grading is pretty intense, and I have to host the release party, which won’t be as hard as happy, positive interaction with others is actually pain-relieving in a way. It’s just all the set up etc. for the event that is tough. Seriously, I haven’t got time for the pain.

My doctor called in Vicodin this morning. It’s not as strong as Percocet, but has fewer side effects. However, it’s not doing jack, and I’ve already taken as much as I’m supposed to. I just took a Zanaflex, which might put me to sleep for a while, so hopefully when I wake up I will have some good grading hours. Because 95 papers is no joke, even if they are final papers and don’t need extensive revision notes.

I have to believe this is temporary. It has to be. No one can live with pain like this. And there is no plan B after the rhyzotomy, at least not with my spine doctor. The only other treatments I’ve read about are pretty freaky: nerve decompression surgery and a spinal cord stimulator implant. Google them if you want; I can’t. The pictures made me ill. I used to wonder if at some point I would end up in “pain management,” which could mean taking narcotics on the regular. This would be a treatment of last resort to me and not how I want to live my life. But now I don't see that happening. The Percocet sickness is actually as bad as the pain, and if I react so badly to it, I can't imagine other narcotics would be better.

Yes, this is a super self-pity post. I apologize. I’m a bit frantic. So I’ll segue into the post I’d been planning in my head before this weird nerve tantrum started.

There is a silver lining to my headaches.

I've had a lot of time to think about pain on a more philosophical level, what it is, what it means. I have amended my actual definition of pain: it is whatever gets the way of living your life the way you are supposed to. It's whatever takes your focus off the real, important things going on, and forces you to obsess, ruminate, look for fixes, treatments, cures. Pain isn't just physical discomfort. It’s also grief, depression, anxiety. It’s whatever makes you say about the future, “I can do that whenever I get past xxx.”

Compared to many people, I have led a charmed life. Other than clinical depression when I was younger, I’ve experienced little in the way of true suffering. I grew up suburban, middle class in nice mostly-functional nuclear family. I never wanted for anything materially. I did well in school. I went to college. The only people in my life who died were grandparents. Outwardly, things were pretty sweet. Inwardly, I had my share of mood problems. I treated these myself with certain street drugs and later, a doctor very successfully treated me with Prozac.

I’ve also been fortunate to find the right profession. I love teaching (well, except the 95 papers). I love my students. I love the college where I work, its role in the city. I love my colleagues. I love the freedom to choose my own course material, and I love the literature I ask my students to read. I love having students come to my office to talk. I love listening to them. I love encouraging them. I love seeing them in later semesters, running into them in the hall, watching them walk at graduation.

But their lives are often complicated, much more than mine, so I have felt this invisible wall between us as I listened to them tell me about their upcoming court date or their mother’s cancer or their brother in prison. I could listen all day long; I could sympathize, but I could rarely empathize. Until now.

These headaches have been the worst thing that had ever happened to me. They have, more than anything else, by my definition of pain, been in my way. Getting rid of them has been my central obsession. Talk about self-absorbed. . . .

Except they’ve also allowed me to empathize in a way I never could. The hundred and twenty-odd students I just finished teaching this semester have so many problems, it’s a miracle many come to school at all. A house fire, a miscarriage, a seriously assaulted teenage son, legal problems, family problems, mysterious pain in the stomach, ear infection, strep throat, rotator cuff surgery, breakups, dying parents, bed rest for a pregnancy. That’s just this semester.

The two who affected me the most are a young woman with Tourette’s who jerks and seizes every waking hour of her life, and a former Marine who stepped on an IED in Afghanistan and suffered traumatic brain injury. They both finished the semester successfully, in spite of physical pain, lack of sleep, and, for her, deep embarrassment. I listened to them talk about things, and while their problems are definitely worse than mine, I felt a connection. I didn’t feel like “the caring professional” as I have for so many years. I felt like a fellow. They know a little about my stuff because I had to cancel class two different times for various procedures I had. They know I have pain. But when I listen to them talk about their pain, I listen in a whole new way. 

They have both been in pain for years now. She’s 19 and has had Tourette’s since she was 12. He was overseas a while ago. She’s pushing to see a new neurologist who, interestingly, is using an experimental brain implant. He is on new meds for a ruptured eardrum that has become infected. He hates the VA and its shitty medical treatment.

I don’t pretend that my “enlightened” views on pain are changing anything for either of them. But they both completed my class and are both taking me again in the fall. They know I will listen if they need to talk.

More than anything, relating to my students and their pain has changed me. It’s made me fully human. Incidentally, in the last two years, I have also lost more people I care about than I have ever lost ever in my life. That has also made me feel more human, less the product of a rarefied suburban biosphere.

And here’s the thing: as I wrote the first chunk of this post, I was in a lot of pain. Small wonder that writing about pain would be painful! But when I started writing about my students and took the focus off myself, I lost myself a little. Right I am not in as much pain. Now it could be that the two Alleve, one and a half Vicoden, and two Zanaflex are finally working. They are, sort of. But it’s also the way pain disburses when it’s shared among us more equally.

Now onto those 95 papers.

PS—comment, why don’t you? I’m not looking for head pats, but want to hear about your experiences, your thoughts, what’s worked for you for your own pain, what hasn’t etc. You can comment anonymously.

About pain.

First, there are different kinds of pain. What makes one pain worse than another isn’t just the severity; it’s also the context. While my headaches aren't excruciating, they are chronic.  Low-level pain day-in and day-out is exhausting and depressing. Demoralizing.

But, perhaps, the end is in sight. Twelve days ago, I had rhizotomies (burning of nerves that transmit pain signals) on four medial branch nerves in my cervical spine, where heat was applied to the nerve endings that transmit the pain signals that cause my headaches, creating lesions that will ultimately cause the nerves to die. I was told I’d be completely sedated at first when my doctor would insert the cannulas (tubes that would hold the probes). I would then be brought into a “light” consciousness during actual procedure so I could tell him where I felt sensation. In reality, I was unconscious for the beginning and wide, wide awake for the rest.

I was face down on the table, oxygenated, monitored. As each nerve was tested with an electrical  impulse, my headache flared to absolutely breathtaking intensity. I cried out; I moaned. It was excruciating. . . for a few seconds. But it was also amazing, because the pain so perfectly replicated the pattern of my headaches that I knew the procedure would ultimately work. This was good pain.

The whole thing took an hour, and then I was wheeled back to the recovery bay where I got to eat pretzels and drink Diet Coke since I'd gone without food or water since the night before. My doctor came to give me discharge papers and a prescription for Percocet, which might have been a tip-off. Nothing really hurt yet, but I knew it would. I had that dumb, post-procedure hangover feeling.

My husband, aka the driver, took me out to lunch, and as we sat in a beautiful upscale mall-chain Mexican restaurant, I realized  I was in pretty solid pain, a kind of post-operative, there-were-foreign-things-in-me kind of stunned pain. I took a quarter of a Percocet after my husband cut it in pieces with his pocket knife. After 40 minutes, I still had the same level of pain, so I took another quarter, for a total of 5 mg. Soon the pain went away.

The next day I had the same pain and there was something scary about it, some promise of worse pain in the future.  I took another 5 mg of Percocet, and the pain again went almost completely away, just a low-level hum under the skin. Then I was completely out of pain for about three days. The doctor had shot steroids and long-lasing something-cain in my facet joints, so I had a few awesome days, along with a very numb neck that I kept thinking itched, but I couldn’t feel it when I scratched, so did it really itch? I’ll never know.

Then facet injections wore off, and now I’m in the nerves-are-dying phase. This pain is really different. The back of my head and upper neck is super sensitive, tingly and burning sometimes, and I’ve had various levels of a more distinct, hard pain (think hit in the head with a baseball bat) than regular headache pain. Ice isn’t cutting it, nor is Ibuprofen or Zanaflex. I’ve take half a Percocet maybe six times in the last week. Even though this pain is more severe and has warranted narcotics, which I would never take on a regular basis (more later), it’s infinitely more bearable because I know it will pass. It can take a few weeks for the nerves to die, and apparently they do not go gently into that good night.

As an aside, I get basal cell carcinomas on my face. About seven years ago, I had one recur, so I was sent for a procedure called Mohs. Basically, you stay in the dermatologist’s office much of the day as he numbs the skin and cuts a large layer of skin around the tumor and packs the wound with dressing as they biopsy the layer in the office. If the borders still show cancer, he unpacks the wound, goes back it and takes another later. This can go on all day, until the borders are clear and you get sewn up. In my case, the tumor was about an inch under my left eye, in a thin-skinned, fleshless area, which made the Novocain shots super painful. Also, sitting there fully conscious, I could see the scalpel moving on my face, could smell the flesh burn as it was cauterized, could actually see the freaking giant hole (size of a quarter, not cool) on my face if I looked sideways, which I tried not to but of course did anyway.

The whole took about thirteen beautifully-rendered stiches (the Mohs specialist is very special doctor) and then I had black eyes for a few days and a temporarily deformed left side of my face (nose pulled over, eye drooping, obvious stitches) for some weeks. Not too much pain, but plenty of discomfort. It wasn’t an experience I was anxious to repeat.

So I was pretty unhappy when I had another spot biopsied last week (I get yearly checks) on the same side, even closer to my eye, and the sample came back positive for basal cell. Because it occurred on the old, perfectly healed, no-one-even-notices scar, I have to have the Mohs all over again. Much closer to my eye. My appointment is on May 30th and I am praying for a cancellation so I can get it over with sooner.
 

That’s another kind of pain—just the grossness of the whole thing. I KNOW I am whining—it’s not melanoma. It’s not life threatening. But the doctor won’t know how deep the tumor is until he starts cutting, and I’m afraid it will be worse this time, will fuck up my eye, the hole and scar won’t heal so perfectly. I’m afraid of the procedure. I’m afraid I’ll look at pictures on the internet the night before and get hysterical about it like I did seven years ago. Ug. Don’t want to think about it.

Back to this treatise on pain in general. . . Pain is so subjective. I read a lot of spine/neurology/pain message boards, and people talk a lot about pain. It’s interesting and confusing. Some claim they are in an 8 all day, every day. I kinda. . . am skeptical. You probably wouldn’t be sitting at the computer posting on a message board if that were the case.

I tend to be pretty conservative when I rate my pain. The worst pain I ever felt was an acute gall bladder attack about 13 years ago. It began in the morning as a feeling like indigestion (I’d had the old Silk City’s chocolate bread pudding the night before and figured that was the culprit). Later that day, I had to attend the very sad, very long Quaker funeral of a friend who had shot himself. The pain worsened, and I sat in the beautiful old meeting wishing I could focus on the Quaker-funeral spontaneous sharing about my friend instead of focusing on my pain. I felt like an asshole.

The day went on and eventually I ended up in the ER, alone, doubled over, nearly delirious. That was pain. That was my ten. I had a gallstone stuck in the bile duct, and my glass bladder had become infected and nearly septic. I had emergency surgery to remove the gall bladder a few hours later and have been fine ever since.

My headaches haven’t come close, and I tend to use that experience as a gauge. This is the “pain scale” I’ve developed for myself: My 1 headache is pain just announcing itself, very bearable. I can laugh and interact, which I do sometimes out of spite, to taunt the pain. But a headache that’s a 1 comes with a sense of doom, because I know sooner enough it will get worse.

With a 2, I have a headache, dull and constant pain. I’m never not aware of it. I can still teach and interact with people, but I’m not as buoyant. I often rub the back of my head, and I start to think about medicating it.

A 3 is full-on, and if I’m out or at work, I just want to go home. I’m very irritable and everything is hard. Now I take a Zanaflex (muscle relaxer), knowing it will take about an hour to work. Why I don’t take it when my pain is just a 2 is interesting. I have a good bit of trouble feeling okay about taking medication (more about that later). With a 3, it’s hard to grade papers, to read, to have a conversation. I can watch mellow TV, anything not terribly stimulating.

If the pain gets to a 4, I’ve let it go too long. Now the headache is in my eye, bad, and I’m pressing my palm into the socket because I find that soothing. I’m completely distracted and I can’t do anything. I want to be alone, prone.

For me, a 5 is the worst headache. I’m dizzy, stumbling. The pain is sharpest in the occipital region at the base of the skull (right side). I can’t focus on anything but the pain, and I feel despondent. I almost never let it get to this point, because I always have Zanaflex with me.

For the purposed of this post, I just looked up the “official” explanation of the pain scale. It seems I’ve been of one or two points too low in my numbers. My headaches have actually been in the 3-7 range. The gall bladder pain wasn't actually a 10-- it was a 9.

THE PAIN SCALE (healthcentral.com)

0  –  Pain free.

Mild Pain  – Nagging, annoying, but doesn't really interfere with daily living activities.

1  –  Pain is very mild, barely noticeable.  Most of the time you don't think about it.

2  –  Minor pain.  Annoying and may have occasional stronger twinges. 

3  –  Pain is noticeable and distracting, however, you can get used to it and adapt.

Moderate Pain – Interferes significantly with daily living activities.

4  –  Moderate pain.  If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting. 

5  –  Moderately strong pain.  It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.

6  –  Moderately strong pain that interferes with normal daily activities.  Difficulty concentrating.

Severe Pain – Disabling; unable to perform daily living activities.

7  –  Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships.  Interferes with sleep.

8  –  Intense pain.  Physical activity is severely limited.  Conversing requires great effort. 

9  –  Excruciating pain.  Unable to converse.  Crying out and/or moaning uncontrollably.

10 –  Unspeakable pain.  Bedridden and possibly delirious.  Very few people will ever experience this level of pain

So about meds. I’ve been sober for 22 years. Like many sober people, I have a healthy respect for addictive medications and mood-altering medications. I took Percocet once before, the day after my gall bladder came out, and I didn't like it. I felt dizzy and restless. I took ibuprofen after that and was fine. 

Nothing helped my headaches before Zanaflex. I tried all the OTCs, as well as supplements and one migraine preventative. Zanaflex was a revelation. It takes about an hour to work, but then my headaches will disappear for about three hours. But it comes with a price, which is sometimes sleepiness and a depressed feeling and less than razor-sharp cognition, which is only actually noticeable when I’m teaching or trying to have a complex conversation. While it “alters” me, at least for the first half an hour, I am not high. I am not even happy. I'm just not in pain.

Even though my doctor prescribed it to me, I haven’t been comfortable with it, because it does make me feel a bit dulled and because it’s not a sustainable solution. But it’s also been a lifesaver. If I didn’t have it, I honestly think I might be out of work on disability. With headaches realistically in the 5-7 category, I wouldn’t be able to teach. But I still lament the months I've taken Zanaflex, come home from work and slept for hours, hard, only to wake up groggy and grade some papers, watch some TV and go back to sleep. Zanaflex, as well as the pain, has been debilitating. Every day has been a tradeoff.

So right now I don’t have the actual headaches, but I have this new, temporary post-rhizotomy pain. Ibuprofen and Zanaflex don’t work. Only Percocet does. So several times, I have taken a half a pill, 5 mg. And I go through a whole crazy torment of guilt and second-guessing each time I do. I discuss it with my husband (who would rather I didn’t, that I just take it when I need it, but I tell him so I am accountable). I wait an hour before I succumb, then sometimes another hour. I debate whether use of narcotics is only warranted if the pain is excruciating. I debate how bad it really is. I take it when the pain is super distracting, when I am too irritated to continue whatever I am doing. I take it so I can keep living my busy, active life for the next few hours.

The rub? The most addictive, dangerous, easy-to-relapse-on category of medication has zero side effects. I don’t feel tired, groggy, dulled. Neither do I feel high. I just feel mostly out of pain (which, as I’ve written before, is its own amazing high). This pisses me off. Why can’t the completely non-addictive Zanaflex be like this?

It’s hard to talk to other sober people about using pain medication. I think they are judging me; I think they think it’s a slippery slope and I am flirting with disaster. Some of the sober community has this idea that every recovering person secretly wants to abuse drugs all the time and always will want to. Well, the truth is, I don’t want to get high. I’ve found the slightly loopy feeling of Zanaflex really uncomfortable. I don’t want to feel altered. I want to feel sharp. I want to be fully awake and aware and participate in everything I love to do. That’s what’s been so sucky about the headaches, how much I’ve had to dial back the cool stuff in my life, my bike, my social life, my enjoyment of teaching.

This last week has been pretty awesome, as I’ve mostly been pain free. It helps that it’s spring, and I’ve spent hours doing hard labor in the garden, hiking in the woods. I’ve napped maybe once in ten days. The Percocet has really helped, and I know taking it is a short-term thing, just when the pain is bad, just while the nerves die. I am very, very careful with it.

I’m pretty confident the rhyzotomies will  work for a while (maybe up to a year). I’m glad I had it done. I wish I’d done it a year ago, when my doctor first suggested it, but it just sounded too bizarre then.

If you’ve read this whole post, I hope it’s either resonated with you and your own pain (I’m sorry) or made you grateful you don’t have it (yet. We will all have pain sometimes). I also hope it lets you know a bit about what chronic pain is like. We can't see another person's pain, and sometimes a person who always seems to be in pain might be. . .suspect to us. Chances are, that person isn't faking it. The pain is real. I know this blog is a bit self-centered. But for some reason I find it helpful and comforting to write about this experience, to think about it and analyze it. To know you are listening.

ETA
Five days since I wrote the above. The pain has gotten much worse, which is not uncommon from what I've read about this procedure. The cortisone has worn off and now I feel the full agitation of the nerve. I've had several days in a row where the pain stays pretty low through the work day, but by the afternoon, the burning becomes searing, up to a 6 or a 7, and makes me pretty useless. Then I really get in touch with Percocet-- and I fucking hate it. Of course this all coincides with some serous deadlines at work, which means hard focus at the computer, very painstaking, careful work. Five mg Percocet wasn't touching it, but 10 mg makes me feel so awful: dizzy, nauseous, anxious. One night I had two clear, pain-free hours to work before the nausea came on, but then I couldn't get rid of it. That night, my sleep was part-dreams and part awful hallucinations. My husband said I moaned and muttered all night.

Yesterday and today, I've just used naproxen, with one 5 mg. Percocet for a serious patch. The naproxen is pretty great. It tamps the pain down to almost nothing. I have a follow-up this Thursday, which will make three weeks. I'm really hoping those days earlier last week were the peak, and I'l be through with all this business of dying nerves and have some headache-free months ahead.