Chasing the migraine pain.

Sometimes I read about people who won’t take medications. They don’t believe in ibuprofen or acetaminophen, maybe they don’t believe in diphenhydramine or pseudoephedrine. They prefer to brew up a cup of tea or hold a homeopathic remedy under their tongue when they have aches, pains, allergies, or colds. And lest I sound as judgmental as some of them do, I don’t think there is a “right way” just a “right way for you.”

In a way, I envy those people. Today I didn’t want to take ibuprofen and lie down. I wanted to function. I wanted to tough it out and be “like everyone else.” You see my mistake there? There is no like everyone else, there is just like me. And I really needed to take that medication because today was baby’s first migraine with vomiting because of extreme pain.

By the time I fully realized what I was in for, it was too late. I took the medicine anyway and lay down. It felt like my brain was swelling and bumping against the inside of my skull in some sort of maniacal symphony. It’s okay, I told myself, you’ll get through this, you always do. But today, with the pain from my post-herpetic neuralgia throbbing in my arm and hand, and the stress of the last few weeks percolating in my system, I didn’t get through it. When the queasy feeling hit, I tried to ignore it because it never, never turns into anything. Except for how today it did.

You’re all right, the pain really does lessen after you vomit. Not a lot, not enough to make me feel better, but enough so that I eventually fell asleep with a cold cloth clutched to my brow. Twelve hours later and I’m still in pain, but at least now my eyes can focus and I’ve managed to rehydrate my system. I’m hoping–praying–that this migraine runs its course quickly, but in all honesty I’m doubting it will. I’m worried I’m in for days of a migraine hangover once the pain finally goes away.

I really, really should have taken that medicine this morning when I first felt the pain coming on. I know better than this. I know that having constant pain makes other pain worse and I know that if I don’t take medicine right away I’m going to spend the next few days chasing the pain. I know all this and I still screwed up. It’s been a rough day.

So I envy those people who won’t take medicine. I envy that they don’t have to.

Bad Patients need Good Doctors.

It seems, in fact, more common than not for patients to defer to doctors and bodyworkers, even when the patients know that doing so is not in their interest. It’s a phenomenon I have come to call the “good patient syndrome,” caused by the following factors:

1. There is a power discrepancy in the health care hierarchy.
2. There is a stark reality that the life of the patient is literally in the hands of the health care practitioner.
3. There is a sense of trust that “doctor knows best.”
4. Those with chronic conditions are usually overwhelmed.
5. Those with chronic conditions are often desperate.

[Good Patient Syndrome]

When I first met my Neurologist I said to her, “I am not a good patient.” She asked me what I meant by that and I told her that I was a student and a writer and that I would not trade off my ability to function in those ways for something that eased my pain. She told me that meant I was a very good patient. I think that means she is a very good doctor.

I’m still having very little luck in finding anything that helps with my post-herpetic neuralgia pain. I have something that helps a little with the allodynia and nothing at all to help with the underlying nerve pain. I keep trying, but I’m picky about what meds I’ll take. I’d rather endure the chronic pain than have some of the side effects, especially the mind-dulling, body-exhausting ones the anti-convulsants cause.

I can easily imagine how I could have been a Good Patient. Ten, twenty years ago I might very well have been. With the PHN, sometimes I am desperate and I’m certainly overwhelmed. It’s tempting to blindly trust a doctor because they are supposed to know more about my medical condition than I am. And it’s frightening to think I might be denied care or support because I’ve been labeled as a bad patient (hysterical, lying, hypochondriac, you get the picture) by a doctor whose instructions I refused to follow.

I’m fortunate in my doctors and unbelievably grateful for them. They tell me what they know and what they don’t know, they tell me about the research they have to do before giving me any treatment suggestions, and they encourage me to take an active role in my pain management. Because I’m a Bad Patient and they’re Good Doctors.

Learning to be disabled in my own way.

It was only recently I was told in a very gentle voice, “You’ve gone past the time when this would have healed itself.”

Well.

I’ve had post-herpetic neuralgia (PHN) since having shingles in 2008, and it was just the end of 2009 when I started to adjust to the fact that it wasn’t an illness, something that was temporary, but was a long-term disability. That was a difficult adjustment, learning to use that word, to apply the “disabled” label to myself.

One of the things I struggle most with is the concept of my own rights. Do I have the right to tell or not tell about my invisible disability? Do I have the right to say no, even to myself and my own desires? Do I have the right to reject treatments and pain management drugs because I prefer the pain of PHN to the side-effects? Do I have the right to be disabled in my own way?

Mystic River

On such a beautiful Spring day I’ve found myself humming a very wintry tune. I can hear children’s voices singing it–me and my classmates, probably elementary school or earlier–our voices rising as we sang about the “white and drifted snoooo-oh!”

I didn’t know Lydia Maria Child wrote that song, nor did I know she was from Medford. Back then I most likely didn’t know Medford existed, it being roughly one hundred miles east of where I was singing, but now Medford is somewhat local to me, as is the Mystic River where I found the Condon Shell and its tribute to Child.

The paths along the river were busy when I was there, full of people and their dogs. There was evidence of the obligatory teenaged drinking (and why do they never pick up their trash?), but even more evidence that this was a place that everyone shared. Lyrics were chalked on the sidewalk along with one very memorable “warning, dead raccoon” complete with arrows pointing me at said raccoon. The Condon Shell itself is colorfully painted and in wonderful shape, even with the winter detritus of dried flowers and frozen berries surrounding it. And, because this is New England, the geese set sail for any person they catch looking at them, hoping for a treat.

It was a beautiful day.

Condon Shell, Mystic River

Shingles, Post-Herpetic Neuralgia, and Me!

I came down with shingles in March 2008 and as a result of it I now have post-herpetic neuralgia. It isn’t common to get shingles at my age. It isn’t common for anyone to get post-herpetic neuralgia (PHN), a chronic pain condition/disability that can’t be treated, just managed. I hit the lottery on this one! [If your doctor offers you the shingles vaccination--take it! Trust me on this, take it!]

ding-ding

I’ve always had this picture in my head of “real” New England. I was born and raised here, I know how amazingly wonderful and varied this region is, but, still, there’s a part of me that narrows my dream to rocky coasts, cold waves, and fisherman’s shacks. I see myself there, a cross between Jessica Fletcher and the Owens women, solving crimes, reading and writing books, and making magic.

You’d be surprised how clear this dream is. I can see myself on a bright sunny morning, riding my bike to the local farmer’s market and stopping at the post office, book stores, and galleries along the way. The bike is blue with a removable wicker basket between the handle bars and one of those old-fashioned bells that goes ding-ding when you move the lever. I can smell the sea air and hear the gulls. I can feel the damp, salty ocean spray on my skin and hear the waves crashing on the rocks.

Over the past few years I’ve come to set this dream in Rockport, Massachusetts, specifically around Bearskin Neck. Quaint doesn’t begin to describe the strip of land cluttered with old, weathered homes converted to galleries, stores, and ice cream shops. It’s a lovely walk down to the edge of the sea where you can look out over the harbor and watch the sailboats bob on the waves or look overhead to see the stars, though you need to dodge the foraging baby skunks who come out after dark. Don’t worry, they’re not interested in you, they’ll fade away by the time you finish your shopping and dinner.

Sunrise Memories

View of my backyard at sunrise, July 14.

I’m not a morning person–as a matter of fact, I’m downright surly in the morning until I’ve had my coffee–but there’s something about the way summer sunrises make the world look as if it’s been dipped in honey that just make me want to get up and enjoy them.

When I was young I spent summer days with my grandmother while my parents worked. She made everything more fun, especially breakfast. On beautiful days like this she’d make breakfast in a cast iron skillet on the outside grill and we’d eat at the picnic table. To this day I swear the bacon, eggs, and toast tasted better when eaten in the blue-yellow-green morning with the sound of birds chirping awake around us.

My grandmother has Alzheimer’s now. So much of her specialness is lost to us, except in memories of a sunny day. That’s why I peered blearily out the bedroom window at sunrise and took this photo, and that’s why some days I take my coffee to the back porch and smile while I’m drinking it.

Whatever happened to lazy Sundays?

The thing about working from home this Summer is that every day is the same. They’re very good days, I accomplish a great deal while being in a pleasant environment and I have time to run errands and do chores. I also have the freedom to nap or just plain goof off whenever I need or want to. But when the weekend arrives it doesn’t feel different to me. I’m left thinking about getting some work done and wondering what happened to the charmed weekends of my childhood.

This is something I can fix, but I can’t quite figure out how yet. Working from home is a fantastic privilege and I cherish it. It’s brought a great deal of peace and balance into my life. Still, the weekends are less than they should be, or at least less than I remember them as, and I want something different. Something special.

Maybe those kind of weekends only exist for children. Before I began this back-to-school adventure I was working full-time and I’d collapse on my couch Friday nights, thinking about all the chores I had to do in just two short-days. It was exhausting and most certainly not charmed but, looking back, at least it was different.

So how do I make this wonderful Summer even more wonderful? What little thing can I do on the weekend to make it somehow resemble the idyllic weekends of my childhood? What do you do to carve out an oasis for yourself and your family? There has to be something because I want my lazy Sundays back.

The Summer of 2006

It’s the Summer of 2006 and I’m reaching into my mailbox. I don’t know what the envelope will look like and I don’t know what I’ll do with it when it arrives, but I know what it will be: an invitation to my twentieth high school reunion.

Everything began just as it should have. There were SATs, college applications, and the scary realization that I’d be living away from home. I remember packing, buying a comforter that I thought would make my dorm room look cheerful, and I remember just once saying to my parents, “I don’t want to go. I want to take a year off.” Common wisdom is that taking a year off leads to never attending college at all and they feared that. I couldn’t articulate my reasons for wanting this time off to them, so I folded that comforter into a box and stood quietly by while things happened around me.

It should have come as no surprise to anyone that I did poorly. I was homesick, afraid, and, though I didn’t know it then, looking for purpose in my life. During the three semesters I spent in college I changed my major five times. I wasted my parents’ money on classes I barely attended and my own on distracting myself from unhappiness and uncertainty. By the time the third semester’s finals were over, I knew I couldn’t return to school, and it’s possible they wouldn’t have had me even had I wanted to.

It’s the Winter of 1987 and I’m packing my things. The cheerful comforter is covered in cigarette burns and ink marks, and I’m throwing away half-empty notebooks. My time being passive is up, and I know it. Facing the real world isn’t easy, but I do, getting a job and, within a year or two, an engagement ring. Everyone is proud of me. Everyone except me.

It wasn’t until my father died, many years after that winter, that I realized what was wrong. I had a house, a job, even a dog and two cats, but it wasn’t enough. Somehow, without noticing, I’d found my purpose, and it wasn’t copy-editing other people’s articles and wondering if I would be remembered for anything after I was gone. I wanted to make my own mark on the world and finish what I’d started all those years ago. I wanted to return to school. I wanted to teach.

So it’s the Summer of 2006 and I’m counting down the classes I have to finish before I get my Associates’ Degree, I’m filling out college applications, and I’m wondering if I’ll attend that twentieth high school reunion. Nothing unfolded the way it was supposed to, but everything is unfolding just as it should.