The long wait for medication to kick in

I began a new migraine preventive almost two months ago and—to put it mildly—it didn’t work at first.

(And yes, I am simultaneously working on a blog to update readers with “Kiss and Tell” news, but as it turns out, when life kicks your butt with health issues, you pretty much end up being forced to put them first. So let’s get those out of the way first and then I’ll fill in the missing pieces of the book tour summer.)

Let me hasten to add that most of the migraine preventives out there don’t work right away. They are powerful drugs that must be introduced to your system gradually and have long laundry lists of side effects. But if they work, they are worth the trouble. I began my Topamax regime at 25 mgs. nightly for a week; then 50, then 75 and finally to 100. My neurologist said if I got too sleepy or had trouble adjusting to any level for whatever reason, to stick there for a while before jumping up to the next dosage.

One month in, at the end of August, I was miserable. My migraine chart showed seven headaches for the month, and one had lasted multiple days. That is not a good month, friends. Only two other months this year have been as bad. (Yes, I keep records. Thank you oh-so-much, obsessive-compulsive tendencies.)

I knew one month wasn’t a long enough trial period for the medication, but I was in despair over my pathetic situation. In addition to all the days of painful headaches, the drug was causing some of the predicted focus problems, plus I occasionally felt very disconnected and drift-y. Since I live alone and don’t have a person that regularly fastens me back to Earth so to speak, this became an issue. My appetite decreased and I never felt like cooking because nothing ever sounded good to eat, probably due to the distinct metallic taste in my mouth. I even lost the craving for my beloved Dr Pepper; never would have believed it.

I tried to keep exercising, but it was a struggle. I started visiting a neighborhood juice bar for healthy smoothies because meals felt like too much of a chore. A friend told me she noticed the circles under my eyes looked like bruises, so I knew I needed more sleep. I felt more depressed every day, like I just couldn’t keep up with the self-care treadmill.

At the beginning of September, I told a friend I was prepared to shoulder a second month of “adjustment period blues” but fortunately she was thinking more clearly than I: She admonished me to call the doctor for advice. D’oh.

He recommended I up my dosage from 100 to 125 mgs.

Though I continued struggling for another couple of weeks, the weirdest thing happened shortly after I upped the dosage. It was so abrupt that I went back and checked my calendar. At 6 1/2 weeks after I began taking Topamax, I woke up one morning and suddenly felt clear again. The fogginess that had crept in, and the tendency of my thoughts to kind of drift off down side roads was abruptly gone. I regained my productivity and felt grounded and engaged in what was right in front of me. And having that clarity restored made me realize just how far afield I had drifted.

And here’s the miracle: With the Topamax dosage at 125 mgs., we’d found the dosage—for me—that pushed the migraines back.

For how long is anyone’s guess. I’ve been in the business of waging war on my headaches for almost two decades, and I know nothing lasts forever. But September will be over tomorrow, and this month has hosted only TWO migraines. Up till now, February was the month this year with the fewest migraines—and I had four that month—so a month with just two is pretty much heaven for me. A super month like this reminds me of how amazing a migraine-free life can be.

It was only two weeks ago that I shook off the Topamax fog, with its depressive tentacles and nasty, isolating tendencies. It’s tricky to know what part the chemicals played in final analysis, because fogginess made it all, you know, foggy (which is why I was not blogging or even Facebooking or doing much of anything, honestly). All I know is the end result is positive.

It makes sense to me that my body chemistry had to assimilate the drug over a period of time. For now, the combination is working very well. My pharmacist told me there is a good reason doctors start Topamax at small doses; many people have adjustment issues. I’m interested now to hear what my neurologist has to say when I relate my experiences during my appointment next month.

For now, I’m just grateful to be waking up day after day with no migraine aura.

For my money, that’s a miracle.

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A little help here, please

The solitariness required to write a book is a given, and I’ve learned to be content with the alone time necessary to make that happen. But as I embark on the final chapter, I find myself looking forward to a point in the near future when I can begin working with an editor to make this exciting book the best it can be.

I’m eager to dig into the structure, find the flaws, rearrange whole chunks of content if need be, polish the prose, make my voice consistent. I have both specific questions and more general concerns I’m ready to discuss with an editor, someone who’s really passionate about this material like Dr. Mo and I are. Someone I trust.

I actually have someone in mind and I’ll of course name her if our relationship becomes official. Meantime, you might be wondering why we’re looking to hire our own editor instead of waiting for a publishing house to assign one. If you read about the process of signing with an agent, you know we contracted with someone in New York who’s been sending out the ‘Kiss and Tell’ proposal for a couple of months now.

But we’ve had a snag and a bit of disinterest, so rather than stewing in any disappointment, we’ve decided to push ahead on a couple of self-publishing fronts, in case that turns out to be the path we take. So at last week’s work meeting, (after which I polished off the health chapter!!) we split up tasks to accomplish in the next couple of weeks. Dr. Mo is researching a loan to cover the cost of self-publishing while I gather exact estimates for what those costs will be.

Fortunately, I know people who’ve written books, and early on I got a recommendation for a very experienced editor who has worked with both fiction and non-fiction. I like her flexibility because, although the book is non-fiction, it’s written in story fashion and utilizes many fiction-like touches to increase its appeal.

I emailed the editor and she got back to me quickly (despite being out of her office), which I took as a good sign. She had heard about ‘Kiss and Tell’ from a mutual friend and finds the concept intriguing. Woo hoo! First hurdle overcome; no prudes need apply.

Like some others I saw online, this editor offers a free edit of 1,000 words of your book, so you can see how she works and whether you’re a good fit. I think this is an excellent practice, because anyone will tell you that finding a person who gets what you want to do and helps you say it in the best possible way is a writer’s dream. Serious writers all long for the partnership of a caring editor.

I perused my decades chapters and decided to submit the first 1,000 words of my chapter on the 80s Ladies. Remember them? I adored those gals and also felt they brought out some of my best writing, so I’m curious to see how much this editor wants to change up what I’ve done. Good editors don’t rewrite everything a writer creates in a bid to insert their own voice; instead they make the writer’s voice truer and stronger.

That’s what I’m holding out for.

Naturally we wouldn’t move definitively to hire an editor until we formally sever ties with our agent. And it may not come to that. In the world of publishing, something unexpected can always happen.

We’re just trying to stay smart, stay flexible and make the best decisions possible for ‘Kiss and Tell’s’ success. Fingers and toes crossed!

30somethings on hold

I have discovered through personal experience that there is nothing like a fractured rib and a punctured lung to put sex — or writing about sex — on the back burner.

Something about having the 911 operator ask for permission to break down one’s door makes certain mundane routines seem much more desirable. “No, it is NOT all right to break down my door; this is a rented condo.” But dang, I’m so dizzy and my head is bleeding (I hope I don’t need stitches), so maybe I can lie on my back and push myself across the living room …

I know. You think I’m joking. I wish.

Last weekend I spent my first night ever in a hospital, getting lots of CAT scans and chest x-rays to diagnose my injuries and the condition which caused them: neurocardiogenic syncope, which basically means I might faint when I stand up in the mornings. Apparently my heart is sometimes a second too slow in pumping blood to my head once I go from horizontal to vertical. And while the fainting isn’t dangerous at all (cue laugh track), it’s the fall that’ll kill you.

I felt lightheaded as I got up that morning, so I put both hands on the door jam and wall of my bedroom, but it wasn’t enough. The next thing I know I’m on the tile floor of my hall, blinking at the ceiling and trying to figure out what I’m doing down there. I have no idea what all I hit on the way down, but I’ve been finding mysterious bruises and sore spots all over my body. I don’t think I’d want to watch a replay, but my doctors could have used a hidden cam of the fall.

Head wounds bleed a lot, so that was disconcerting, but the whack on my head didn’t need stitches after all, for which I’m very grateful. But I hit the floor with enough force that my rib cage hit my lung and made a hole. Thankfully, the rib didn’t actually break, which I guess is what usually punctures lungs.

Anyway, that punctured lung, on the left side, is what brought on all the drama. Once the air leaked out, I began to have trouble breathing, and the symptoms mimicked a heart attack. It honestly felt like a hand was squeezing my heart, and with enough force to cause terrifying pain. By the time the paramedics arrived, I was gasping and having trouble talking. Pain level on a 1-10 scale? 10!

They did heart readings immediately (just inside the door of my condo, where I lay after finally unlocking my door) and determined my heart was OK, which was a relief — but NOT! I couldn’t figure out what could hurt so much in my heart area, that wasn’t my heart.

The one light moment of the whole event came when the guys were asking me to tell what day it was, whether I had any history of heart attack in my family, how old I was. I could not get breath to answer anything quickly, so on the age question, one guy tried to helpfully supply the first part of my answer: ” Thirty …. ?” he said.

Laughing was out of the question. Even smiling was beyond me. I finally just slowly gasped, “Fifty …. seven.”

“She doesn’t look it,” muttered an unseen but appreciated paramedic.

It was all downhill after that; actually it was downhill from the moment I fell. The elevators in my condo building are too small for a gurney, so I had to be strapped into a wheelchair for transport to the ambulance. I spent a couple of hours in the emergency room where they found the fracture in my rib and hole in the lung. Fortunately, only 10 percent of my left lung had collapsed; but such holes can expand and I was admitted in case I lost 25 percent of my lung capacity. At that, they would have put a tube in to reinflate it, I believe. It’s hard to pay attention to everything when the doctors and nurses come and go in dizzying fashion.

The good news is my wonderful friends showed up immediately at my bedside and didn’t leave me alone for any of the scary, confusing, humbling hospital stay. They formed a network to provide rides, errands, Rx refills, Blue Bell ice cream and more. I spent 4 nights recuperating with one saintly couple before they cleared me for independent living again.

I returned to my little condo with relief, but also some trepidation. Nothing bad had ever occurred there, and now I have unsettling memories to add to all the peaceful, happy ones. It’ll take a while for everything to integrate. I’m torn between wanting to pretend it never happened (start exercising right away and ignore the warning that ribs take 6 weeks to heal) and remembering what it felt like to regain consciousness on my tile floor, confused and alone and bleeding.

I told a friend this, and she offered her belief that it’s best to honor all your memories, good or bad.

I know she’s right. It’s just going to take a little time to assimilate this whole experience.

Since there isn’t a cure for neurocardiogenic syncope, I might faint again. (This is actually the second time it’s happened; the first time also occurred just after I got out of bed, but I had 19 stitches in my head that day, and no diagnosis, just the assumption that it was an accident.)

Now I am more nervous about the slightest dizziness, and I am resigned to grabbing at walls even when there’s no need. One nurse told me the treatment for this condition is to sit down when you feel dizzy. Real high-tech right? And I read online that it’s more common in tall people, supposedly because the blood has a tiny bit farther to go from the heart to the head.

So … I’m educating myself and that’s a good thing. One friend told me of a young man in his 20s with neurocardiogenic syncope who faints a lot, like in the middle of the day even. My heart goes out to him, and his case gives me perspective. With only two incidents to date, I feel fortunate instead of cursed.

So that’s the path I’m on: taking stock and looking for the good in every event, even the ones that truly suck. Having a diagnosis is good. My goal is to take precautions so any future faints will be nothing but mild little swoons, an ever-so-common occurrence in this Southern summertime heat.

Mission accomplished, but it was a sweaty task

At the beginning of last week I set some internal deadlines for getting needed work done on my book. I also promised to post here with the results—or lack thereof.

I’m happy to report I did indeed get an outline completed and have a much clearer mental picture of what the book will look like. I survived and even flourished during long periods of no face-to-face human contact; my most productive times were the most solitary, not surprisingly. (Although my phone interviews were nice excursions into lively interaction.)

I set up shop in the den of the house where I was dog sitting, and made myself comfortable, despite the annoyance of a recurring migraine during the first of my days here. So far, so good.

But life has a funny way of taking you down the side roads. Around lunchtime on Memorial Day, I looked up from my absorbing work with the realization that I was pretty darn warm. The thermostat told me it was 81, despite the 76-degree setting. I called the number of the service company the homeowners left me, and naturally no one arrived till 5:30. By that time, it was 87 in the house and I was cranky.

The serviceman diagnosed a bad breaker, which he declared himself unable to fix because of liability issues. So I packed up my canine charge for a night in a cooler clime, and returned the next day to meet the electrician I’d finally managed to corral late the evening before. You will perhaps have already guessed that my hot environs were NOT due to something as simple as that bad breaker. No, it was the AC compressor.

So now we’re deep into a second visit from the service company, a new diagnosis, estimates of repairs, overseas calls to the homeowners, ordering of the new units, day-long installation processes—oh yeah, it was all that and more. The process took three more (very hot) days. Did I get much book work done during this time? No I did not. Do I feel guilty about it? Yes I do.

But a lot of life seems to happen on the side trips, so during these inevitable off-road excursions, I try to manage my expectations and not let my irritation take over for too long. But it was hard this past week. I’m juggling myriad management problems involving my property in Texas (it needs repairs before I can rent it out again), and so combined with the unexpected issues during house sitting, I became overwhelmed by the sheer number of projects I was responsible for shepherding to completion.

But you know what? I realized even in the midst of it all, that it was a phase. That it felt really bad, but that it wasn’t going to last; one way or another it would pass. And I was right. Today, Dusty and I are enjoying the efficient air-conditioning of a new unit, and two days ago I found a handyman to tackle three of the most pressing issues I was worried about on my Texas property.

It’s all good. With the sweat of my brow, I got through the worst of it.

And now. If you’ll excuse me, I’ve got some book work to get back to!

Alone at last

An e-mail this morning from a friend who said she enjoys following my blog sent me immediately to this site for a new post. Can’t imagine why I don’t do this a little more often, and hey, maybe I will now that I have no one to talk to. Cyberspace makes such a convenient substitute.

Yes, I’m living alone. For the first time in my life.

When I landed in the West Palm airport after driving to Cleveland to accompany my roommate to her new home and life, I was pretty despondent. I didn’t ask anyone to meet me inside, and that was a mistake. I felt so completely solo walking down the long, wide halls, watching all the reunions of passengers around me.

Then, for some reason, it occurred to me that it no longer made sense for my former roommate to be the ICE (or In Case of Emergency) number on my cell phone. Which she has been for years and years. The thought of removing her from that category and facing the chore of figuring out who the heck my ICE would now be did me in. I teared up, realizing how close we had become and how much we relied on each other. I was definitely dragging.

But a girlfriend from the newspaper pulled up out front a while later to run me home and we had a great visit catching up on folks I miss from the old Palm Beach Post gang, and I started to feel normal.

And honestly, it hasn’t been bad since. I do feel a giant void because I no longer know everything my roomie is up to and involved with, but we’re staying in close touch to ease those pangs. She sends me photos of unpacking and I send her pictures of the sunrise on Flagler Drive, where I live now.

But otherwise, I’m adjusting. I got home on a Monday, and though I ran a few errands and talked to sales clerks, I didn’t have any social engagements until dinner with friends on Saturday night. That’s a lot of alone time right up front. I did half a dozen phone interviews for the book however, which provided excellent therapy for my extroverted self.

The women I’ve spoken with are fascinating, forthright and funny. Getting them to talk openly about sexual desire isn’t nearly as difficult as you might think. It seems we’re all hungry to pull aside the curtains and learn a little more about what makes us tick and why desire is such an ephemeral thing. I wish I could meet them all in person, they sound like such fun people on the phone, but the number of interviews this book is going to require makes that impossible.

I’m not working very fast yet. I admit that. I assume it’ll go faster when I don’t have the distraction of trying to arrange all my stuff. Speaking of my stuff, WHY am I so absorbed by it? Working a full-time job left little time for obsessions, but now I’ve happily become camp counselor to all my belongings. Music? Over here. Family letters? Here with birthday cards and the like. Photos and photo albums line up over there. Tools? Hmmm. Let’s find you guys a box that will hold the entire gang and a shelf.

Honestly, it’s The. Most. Fun. Which is not to say that as I putter around in search of the ideal locale for, say, my sports equipment or perhaps my  jigsaw puzzles, that I’m unaware of the fact that I am contributing nothing, nothing to the planet. I’m taking up space, filling the dumpster with my castoffs and adding nothing to the social and political conversation of America.

So why am I so content? Maybe it’s just a phase, but I am deeply happy. I feel profoundly grateful for the chance to direct my own activities, to be free of the 9-5 workday for now. I’m shocked at how little work I have to do before my Camp Counselor is wanting me to take a break and tackle another home project. (Gotta get some pictures on these walls sooner or later, but they’re concrete and I’m a bit intimidated!)

This is a one-bedroom place and I’m probably three-quarters of the way through organizing, so I know the puttering will wind down pretty soon. But it’s been an amazingly contented week for me, realizing I like being my own company, that it’s OK (if perhaps not admirable) to be connected to my belongings, that it’s permissible to savor this amazing freedom.

After a lifetime of sharing dorm rooms, apartments, houses and land, I’m ready to fully experience the privilege of getting settled comfortably in this precious, solitary space.

Some things never change

I woke up around 7 a.m. a week ago today and before I raised my head off the pillow, before I even opened my eyes, I felt the sickening ache and realized I had a migraine.

Aside from the fact that I can’t figure out how the heck my flagrant act of — gasp! — sleeping could induce a migraine, the crummy couple of weeks I’ve experienced battling my headaches makes me realize I’d sort of hoped that retirement might banish them entirely.

I’ve fought migraines for 15 years — they pitched tent when I entered perimenopause around age 40. I wrote about my exploits and efforts to control them several times while working for the newspaper, and was always amazed at the outpouring of response. But with more than 40 million Americans suffering alongside me, I guess I shouldn’t have been so surprised.

Despite my long history with the headaches, and this recent bad spell, I retain the belief that one day I’ll have a migraine free life. Though my head is wonderfully clear today, the percentage of days when I wake up and begin to feel the dreaded aura behind my left eye is much too high. My current medication is Maxalt (and I believe I’ve now sampled ALL the triptans, thank you very much) but it just doesn’t seem to be able to fight recurrence anymore, which is a huge problem with triptans (the best meds to fight migraines these days). I’ll take Maxalt at, say, 10 o’clock one morning, feel sick for a couple hours while the medicine kicks in and banishes the pain, have a fairly productive afternoon and evening, go to bed ever-hopeful — and wake up to the exact same thing the next day. My neurologist recently prescribed an anti-inflammatory to take at 12-hour intervals to try to arrest this tendency, but this nasty rebound effect is a well-known side effect of triptans.

Almost two years ago I participated in a yearlong study through my neurologist, testing a new drug in a different family from the triptans. “The next generation meds” my doctor called it. Not once in that entire year did I have a migraine recur, so it’s pretty obvious I was receiving the new med (which was being compared to Maxalt in that study). Every time I visit my neurologist, like a broken record, I ask, “When is that test drug coming on the market?” When the FDA approves it, he says, bracing for my incessant whining, which he knows is coming.

Meanwhile, thank goodness, I have qualified for insurance coverage for Botox treatments to stem the migraines. In another research study, this one for 6 months, I got shots to the head and neck to deaden the muscles and nerve endings that transmit the pain of migraines, and though it is pretty tough to sit through 30 shots, I long ago got used to enduring unwanted procedures in order to treat my migraines. My headache load — which 5 years ago caused to me take medication as much as 30 times a month — is now down to 4 or 5 headaches a month. As long as my Maxalt works, and I keep the recurrence rate down, that’s a tolerable number for me.

Which is why this recent spate of rebounding headaches has put me so out of sorts. I lie in bed at night and plan the following day — I’ll post a new blog, make a grocery store run, go to the condo and work on the book the rest of the day — but by mid-morning all is in disarray.

When the aura first starts, there’s the sheer disbelief that kicks in — I CAN’T be getting another headache, can I? Then you try to gauge how bad it is. Can I slip by and fool it? Mainline some caffeine and maybe, just maybe, avoid getting a full-blown migraine? Then there’s the disappointment, when you realize nothing you’ve done is going to keep the headache from coming. Then comes the surrender, when I tear open the foil packet of Maxalt and take my medicine. It works, you see, but it also makes you feel lousy for at least an hour before it does. Your head still pounds, your throat gets thick, simple expressions like smiling seem gigantic. Right before I take my medicine, I feel angry. I guess because I know I’m about to lose one more battle in this long war. But immediately upon taking it, I try to give myself a pep talk: OK. It’s all right. You’ll feel better in a couple hours. You did the right thing.

Negativity + migraines is lethal, so I do try to keep it at bay, but let’s not kid ourselves: I get really mad about them some days. I blame myself or circumstances or anything handy I can find, even though I know better after living with and studying this disease for all these years. My next Botox treatment is still a month away (I think 85 days between treatments is normal) so I’m trying to resign myself to the interim. I’m on Day 3 now with no headache and am feeling so clear and happy, but to get there, I did something a bit unorthodox. But I figured, what have I got to lose?

Here’s what I did, and it’s worth noting I would never have felt I could do this when I had a full-time job . . . I possess way too much guilt for that. Last Thursday, when another recurrence happened, I took the entire day and fought back against the headache with everything I had — except medicine. My theory was that I wanted to break the medicine’s cycle. I rested and didn’t read or strain my eyes, I put ice on my neck and forehead, lay down in a dark room, put cucumbers on my eyes, went for a reflexology treatment, ate healthy foods. At some times I felt very sick, at others I felt OK. By bedtime, I thought I might be OK. The pain was mild enough by then that I could fall asleep, hoping my experiment would prove to be successful the next morning.

No such luck. And I did NOT have the stamina to endure another day of pain, so I took Maxalt around 8 a.m., as soon as I knew. BUT . . . I have been headache free ever since! Though you never know what actually works, perhaps I broke the cycle and got the medicine out of my system long enough for it to be effective again. Whatever the reason, I’m just thrilled to feel normal again. It’s my third day of no aura, no sick disappointment in the pit of my stomach, no rearranging of the day’s agenda to accommodate a pounding head. Yay!

Anyway, lots to do, so I better get to it — now that I have energy to burn. I’ll blog again soon about the possibility of moving my entire life into what has previously been my work studio. Yes! Roomie may actually be selling the house. Change of address imminent after 7 years in our Florida paradise house. Is it any wonder my to-do list is out of control?

Job = life?

File this under realizations that don’t come to you when you have a job.

Quite simply — a job, especially one you like, creates your life for you; without one, you are faced with the opportunity and challenge of creating your own life.

Some people learn this sooner than others; I’m new to the party. Fortunately, I’m old enough and have enough passions, interests and ambitions to start crafting a structured life, but even so, I sometimes feel I’m working with a blank slate. I come from a workplace littered with distractions, deadlines, drama and delight. Now I’m facing the essentially solitary task of writing a book. There is no built-in start time each morning, no “first interview” of the day, no weekly deadlines — just one long project to write and a boatload of life chores that threatens to capsize my sanity some days. (I’m only 8 weeks post retirement and wondering where I previously found the time for all the busy work that sucks up my attention day after day.)

I’ve also discovered that once you say no to full-time work, you can actually say yes to just about everything else. For example, I now have the capability of traveling to China to teach English as a second language, training to be a vet tech, moving to Australia to become a jillaroo or doing manual labor at a garden shop. I could work at a gym, move back to Texas, hire onto a boat bound for anywhere, become a carpenter’s apprentice, beg my former employers to take me back or bum off various family members. See what I mean? When one door closes, every window in the place is suddenly open wide. I now have to choose exactly what I want to do because the job is no longer eliminating every other possibility.

Which is why I find myself creating a brand-new life — right here, right now — and it’s as exciting, daunting and fascinating as you’d expect. And despite all the tempting roads I travel in my mind’s eye, leading to various scenarios and lives I could lead, for now, the path I’ll travel is the one I chose before I even left my career. One that hopefully leads to me being a published author.

So — for the foreseeable future — find me (still) at my desk!