It's still possible the rhizotomies will work, and I have not given up. It could take up to two months. I really need them to work. It was such a stressful procedure; it can't be for naught.
Zanaflex at this dose knocks me on my ass. So treating the pain has an apocalyptic feel-- take this pill and life is completely suspended, for at least two hours. Whatever plans I have are scrapped. I can't meet you for lunch. I can't go to the union meeting. On a sunny spring afternoon when all I want is to be out in the woods with my pup, this is really a drag.
I spent last week preparing for my own 50th birthday party, something I'd planned to do for about a year. Every time I make long-range plans, I assume I will no longer be in pain. At heart, I am on optimist. Generally, I love giving parties. I love getting my house and yard ready, buying new drapes and putting in flowers. I love days of cooking, often my most labor-intensive recipes. Before I had headaches, these days of industry were some of my happiest times, better than the actual parties themselves.
I assumed by now I would be out of pain. When I wasn't, I thought of canceling the party. But all along, I've been loathe to let pain take away too much, lest the ensuing depression just make the whole thing worse. So I decided to have the party, albeit a relatively small one (maybe 20 people). Still, I had to go all out with preparation: massive gardening and spring house cleaning, marathon cooking sessions. I was in and out of pain and Zanaflex zombiedom the whole week. I began drinking really strong coffee so I could stay awake through the sedation, and I felt like I was doing speedballs. But not in a good way. One of my best friends came in town the night before, and I loved hanging out with him. One-on-one with someone I am so comfortable with is great, and even though I was dampened by Zanaflex, we had a great time. The actual party was objectively awesome, but I felt cranky and overwhelmed and less than sharp. I hate that. The wasn't really about me turning 50, but rather a way to celebrate all the lovely people in my life, have them in my house eating my vegan soul-food feast. I wish I'd been able to be more present.
Sometimes I feel like I'm making all of this up. It's so ridiculous and unnecessary. I still don't know why I developed bone spurs in my neck. These days I'm tipping the blame toward the late-stage Lyme disease I was treated for in 2001. Lyme disease can manifest in different systems of the body and cause all kinds of bizarre havoc: neurological symptoms that cause mental confusion, heart problems. For me, it was mostly in my joints with migratory arthritis. The worst was in my neck, and before I was diagnosed, I was baffled by the pain I felt every morning, my neck almost paralyzed by pain and stiffness. I had to push myself off the pillow in elaborate contortions. I figured it was ergonomic and I bought new pillows. I adjusted parts of my bike. I saw my first chiropractor, who kept adjusting me to no effect. It was nine months before my physician sister, worried that I had MS, told me I had to see my doctor and get some tests. It turned out to be late stage Lyme, curable with massive antibiotics and about six months of serious fatigue. After that, I moved on. I never thought the Lyme had any lasting effect. But now I'm not sure. In my reading, I've discovered that if left untreated as mine was, Lyme can cause permanent joint damage. This may have led to the development of bone spurs. I'll never know for sure, but I do like having something to blame.
I'm teaching first summer session and I have awesome students. Lots of energy. I wake with a 2 headache every day, and can't take Zanaflex because because I wouldn't be able to teach. So by the middle of my second class, the pain is on front of me, a 4 or 5, and it's bad. Everything annoys me: the side conversations in the back of the room, the ladies who feel they must rustle through their handbags while I'm talking. I try very, very hard not to let my irritation show. I am the fun teacher! I am in my element! But I know it comes through; it has to. I being the class in a great mood and I end feeling embattled. I leave class palming my bottle of meds. The Zanaflex is in my mouth before I leave the building. Then it's home to happy dog, happy husband, and I say hello and goodbye as I make my way to bed.
Happy dog is a special comfort. On the worst days, he never leaves my side, my loyal attendant. I don't know how I got so lucky.
By any measure, this is chronic pain. It has been going on for thirty months now. But in my mind, I don't have chronic pain. Instead, I am on a constant quest for treatment to relieve this temporary pain, and while I've found bursts of relief, nothing has lasted yet. The truth is, even if the rhizotomies work, the nerves will grow back in about a year, and I'll have to get them again.
I don't live in the moment, because many moments kind of suck. I live in the possibility of the future. I live in the idea that there are pain-free days ahead. I've had them. I'll have them again. They have a currency I never thought possibly, the breezy luxury, the golden days.
There is some good that's come from this. First and foremost, it's shown me the wonders of my profession. When I am in pain or on medication, it's difficult, because teaching is an all-cylinders-firing pursuit. And it's pretty cool to have a job that uses the best of me that way.
It's also shifted my priorities. A few things have fallen by the wayside, particularly cycling. I used to ride a road bike pretty seriously-- maybe 100 miles a week on my own, and 75-100 miles charity rides throughout the season. The decade I rode was the most athletic I've ever been in my life. But in the last two years, I've barely ridden at all. It just isn't fun when I am hurting. It's dangerous when I'm on Zanaflex. And when my neck pain is extreme, it's nearly impossible to be in the head-forward position of a rode bike for hours at a time. I definitely miss it. I am determined to ride again this year, although I will probably never ride as much as I used to.
I also socialize much less. I've had periods in my life where I socialized in an almost manic fashion, went out a lot, had a million friends. These days, I'm a homebody. I like to have a few people for dinner sometimes, and I go to a few parties a year. I can't deal with a fracas when I have any degree of headache. I don't go see bands. I don't go to the movies. I'm not much for loud restaurants, busy art openings. Weirdly, I prefer it this way, and that's not just because of headaches. I think I might actually be more of an introvert than I realized. I like to be alone. No social activity makes me happier than going to the woods with a friend and our dogs. I sometimes think the hyper-socializing helped me avoid something.
I've cut way back on stuff at work, committees etc. I used to be really involved. I was an assistant department head for six years. I served on tons of committees, gave presentations regularly. But these days I just can't. Most of this work happens in the afternoons, and that's when my headaches are the worst. I teach classes in the morning and there's just no way I'm sticking around afterwards if I'm in pain. I'm lucky to make our monthly department meeting. I can't commit to anything beyond that right now. If I make myself attend something, I'm either in a total crap mood or half-asleep from Zanaflex. I don't feel too awful about this because I was so involved for so long. And I know I'll be involved again, once the headaches are gone.
But I haven't been willing to do less or opt out of everything because I'm "sick," This is most true with my family. I have a big, loud, active family, and holidays get pretty chaotic. I would never stay home, so I end up with lots of headaches, on lots of medication, taking lots of naps, always pretty cranky. I wish this weren't true. I barely remember the holidays this year.
I still garden, take my dog to the woods, keep my house relatively together. I've finished a novel since this whole thing started, as well as numerous short stories. I can't stop writing or I will feel like my life has fallen apart. I don't write nearly as much as I want to/should, but I do it. When writing is going well, that lovely "flow" state I get into is somewhere beyond pain, at least for awhile. That's pretty cool.
I've learned how to conduct a medical odyssey, how to push and see specialist after specialist until I find something that works. I've learned a lot about alternative modalities. I've learned that different health care practitioners approach the body in radically different ways. I've read and read and read about my condition, in professional journals and websites and discussion boards alike.
I don't get too twisted about much right now. I don't have time to obsess over who said what to me and whether it was insulting. I don't much care that I've gained some weight. A lot of my mental space is taken up with evaluating my pain, thinking about when to take medication, anticipating the next treatment, planning a nap. I'm very well-rested.
I really don't worry that this pain is permanent. Because it can't be. I can't live with it; I really can't. It's too intense and too limiting. That may sound suicidal, but it's not. I just mean that I will keep pushing until something works. I have to live my life and I can't imagine throwing in the towel, going on disability, becoming a permanent pain patient. Right now I am managing things with the Zanaflex, losing some hours to the naps I end up taking, and while that's not at all ideal, it's bearable. I still think the rhizotomies are going to work. Any day now. And if they don't, I might end up exploring treatments like nerve decompression surgery and a spinal cord stimulation implant-- treatments that seem crazy to me now like nerve burning seemed six months ago.
