Don’t Get Cocky

I should have fucking known better. You know? Years and years, knowing that if I talk about my improving health situation, it seems to always backfire and not remain true. This is a cruel comparison, but one I feel it’s my right to use because it happened to me: I was pregnant, but only about 3 weeks so. I was so excited that I told family, extended family, everyone I knew and their sisters. I told customers at Grounds For Thought. I told strangers. Then, I miscarried. And had to tell all those people about it, and the ones I missed, I had to continue telling for weeks as they would run into me and say “How are you feeling? Morning sickness yet?” etc. Normally, wise women wait until the heartbeat is detected, or even until the first trimester is over. But no, not me. Believe me, I waited with the next two pregnancies.

Back to migraine, my mom and I developed certain code words we would use instead of “headache” when things were going better. Even a raised eyebrow and a nod would do it. A non-verbal “still okay?” and a silent “yes.” The fear being that the minute we mentioned my sudden healthy good fortune, the Headache Gods would hear and realize that they’d been neglectful in their duties. But no, this time, I had to blab, and brag, in the most public way possible. And everyone was so genuinely happy for me. Where is Han Solo when I need him? “Great kid!” with a “Don’t get cocky” under the breath is what I needed to hear. I deserve all his casual disdain.

Because I did get cocky. I could have written that blog without talking about not having taken anything for pain that day. All I wanted to do was make it to bed, so it could remain true. But right after posting the blog and linking it to Facebook, my head started to hurt. It increased from the extremely mild .5 to 1 (on 10 scale) I’d been experiencing throughout the day to an alarming, sudden 4, which isn’t just when I would take Excedrin or Advil but when I usually jump to Percocet or Imitrex. I even had aura. But still, I decided to take only Advil, 4 of them, granted, with a muscle relaxant. And head to bed. I read to Alexandra and the pain only increased. Still, I took everything but Imitrex before collapsing into sleep. The Hyland’s, another Xanax, another muscle relaxant, a Mucinex, my herbal medication, my nose spray, aspirin and Tylenol. Crashed into sleep at 10 pm. And woke up at two with that fucker headache at a whopping SEVEN. And I was angry.

Right now, the next day, I can’t remember whether I popped one precious Imitrex or two at that point, how many more muscle relaxants and Xanax. I know I took a Zofran for nausea. I know I had to have John’s help in waiting out the medicine, he did the wonderful “tap” technique he read about online, researching “how can partners help migraine sufferers.” Two fingers, finding the spot of pain on the forehead, and constant tap-tap-tap-tap on that pulsating black source of agony, quietly beating it into submission; but as soon as he stopped the blackness would once again become spiky and cruel, a half-dollar-sized piece of body-poisoning acid, dripping into my temple and cheek and neck and making my muscles rigid. Tap-tap-tap-tap-tap-tap.

I woke up at 8 am or so with the girls, my headache at a much easier 2 but not gone, my anger barely assuaged. The usual popping of Excedrin and Sudafed in the morning; that which I was so happy about not having had to do yesterday. My nerves fried, pressure to get ready for this trip, the birthday celebration for my Dad and sister-in-law tonight, going to work. Possibly getting together with friends later. No fucking room for pain. Now, I am lying in bed, having missed half the celebration with my family, missing my friends once again. And I am furious. Why should one headache make me this angry, when on the whole I am doing better? Everything I said in the blog yesterday is still true. It’s because I crowed about it, made up a special dance and waved my pom poms like a fucking cheerleader. I allowed myself the luxury of hope… and I know better. The Headache knows better. Because in my life, still, the Headache always wins.

But… I am building up my reserves. I am taking my herbal / vitamin concoction every day, drinking more water, eating better, remembering to change my patch at the right times, trying to get regular sleep. While yes I am still at a headache every single day, I am down to approximately 4 severe ones per week from 6. I have been out of the ER longer than any time since before I got pregnant with Isobel. I’m still making progress. My goal is to live with the Headache peacefully, so that neither of us has to beat the other down. The Headache and I are one. If I stop fighting it and live with it, come to terms with it, no one has to win.

Reflections on a Year’s Worth of Changes

As we begin preparing for our annual trip to Cape May, New Jersey this week, I can’t help but think about how things were for me last year at this time. Writing a blog, first of all, would have been totally out of the question. One month away from one of the most drastic surgeries a woman with migraine can consider – total hysterectomy – I was taking approximately 4 Vicodin per day just to stay out of the Emergency Room for 3 – 4 weeks at a time. I was going through Imitrex, as well, like water; far more than my insurance-allotted 18 per month (I had some wonderful Imitrex elves popping out of the woodwork to supplement my arsenal from time to time). I missed days and days and days of work, so many that I ran out of sick time before my surgery recuperation even though I had just switched to full time and my benefits are more than generous. At home, I was always in bed. All I could do was tell my older daughter “The surgery will make me better.” Not knowing, at all, if that was true.

We weren’t sure I would be able to go on vacation with my family. We researched where the closest hospital would be – we’d been there the day before getting married, but that’s another story – and printed out a map. I packed my well-worn letter from Dr. H describing my situation and which medicines I need in an emergency situation. I got extra, and then even more extra, medication. And we all crossed our fingers, not planning to do many of the fun things we usually do in Cape May. Just getting me there seemed like a miracle. And I planned to go.

But needless to say I couldn’t help get the house ready for our departure (and also our beloved cat needed major surgery – awesome timing); couldn’t pack much or do much for the girls. I spent all my time at home in bed, in pain, trying to stay out of the hospital. I was such a familiar sight to those doctors and nurses; I can’t imagine what they thought of me, which is why I had my precious letter from Dr. H. Some of them were kind, some were cruel. But with rare exceptions I always got the treatment I needed. I was depressed, I missed my friends and my children and my normal life.

Continuing to take the 4 Vicodin a day, I got through vacation. I spent little time on the beach, or in direct sunlight, and slept a lot. At least I could smell the sea air through the open third floor windows.

Earlier this week and last weekend were a little rough, but today I feel better than I have in years. We are going to be in Cape May one week from right now, and I am the one making lists, packing, planning, preparing. When Dr. “Manhands” got me on the Vivelle Dot patch, a twice weekly change, earlier this year, that was a turning point. And every month since then I’ve done a little better. Better enough to shift to a natural preventative which I would never have even taken seriously in the past due to the severity of my symptoms. I started taking that Migraine Support Formula I mentioned in my last blog a few days ago, and it does make me a little sleepy, so I have to figure out the best way to split up the 6 capsules per day. Today, I tried 2 in the morning and that seemed to work. And today is the first day in years, the first day I can remember, when I haven’t had to take ANYTHING for pain. Not Excedrin, not Anacin or Advil. No Hyland’s Migraine belladonna tablets. No capsicum nose spray. No Imitrex. (I needed all those things yesterday.) No Percocet, no Ultracet, no donated-to-the-cause Vicodin. Usually I have to take an OTC med when I wake up, or at least by 11 am. Not today.

It is 8:30 pm, and counting. The tide is coming in.