A Waiting Game

The neurosurgeon gave us some insight, but also made the decision more difficult. He doesn’t think that removing the leads and keeping the battery is a good idea. Because the main risk with the surgery is infection, removing them now to have another surgery down the line to either replace them or remove the battery just increases the risk of infection.

Yesterday’s headache didn’t settle down too much and it continued into today. I’ve been turning the stimulator on and off throughout the day. My headache pain is worse with it on than with it off.

Eventually I will have to decide to have the leads replaced or the device taken in out, but it’s not an urgent decision unless I have mechanical pain (the pinching pain and tenderness) even when it is off.

Today’s plan is to keep in and leave it off for a while — maybe three or six months. If I decide my pain isn’t any worse than it has been with it on, I’ll have it taken out. If I feel worse now than I did with it on, I’ll have the leads replaced. It’s a matter of waiting, which I’m not very good at.

The great news is that since the current leads are migrating and will continue to do so, I don’t have to worry about how my movement affects the leads. I can bend and stretch and carry heavy things without a second thought. I’m looking forward to a celebratory yoga class when I get home.

Thanks again for listening to my saga. I’ll start blogging about something other than myself soon, I promise!



Hi, everyone! I’m back. Leading up to and encompassing my unplanned hiatus was a mostly crappy stretch. Here’s the brief version.

I kicked off the month with a small birthday party for myself, where I didn’t overdo it before or during the party and had a wonderful time. The next day came a cold that knocked me out for 10 days. I managed a few things, like blogging, but the cold combined with headaches to keep me from doing much more.

Once the cold started to let up, I threw my back out. I can only guess that coughing fits, not moving much and sleeping on the couch one night were co-conspirators.

This brings us to last Tuesday when my mom came to visit. Lots of Advil helped my back enough to move, but level 6 headaches came on every afternoon she was here. Friday morning, when my sister was to pick us up for a weekend at her place, the head pain shot up to an 8 and I stayed in bed. Waking up about 1 p.m., my head was better and the hangover was short.

My sister still drove up and stayed the night so we could leave in the morning. For our birthdays, she gave my mom and me tickets to see the Lion King musical with her, her three kids and some friends. The tickets were for Sunday, the last day of the musical, and the day promised to be a great affair.

Sure that I was on the verge of breaking the headache, I kept pushing myself. Saturday morning I felt terrible, but doped myself up for the 3 hour drive and did OK until the last 45 minutes of it.

The weekend went downhill from there.

The pain was between 8 and 9, and the other symptoms were awful: dizziness; light, sound and smell sensitivity; nausea; ringing in my ears; allodynia… I spent part of Saturday evening cowering in my sister’s car because it was quiet and dark in the garage.

Multiple times Saturday afternoon and night, I called Hart to cry and complain. Sunday morning was no better, so he came to get me.

Hart drove a total of six hours before a horrendous work week because I was miserable and didn’t think I’d be able to take a train home. I thanked him over and over again; he responded that he wished he could do more. I am so incredibly thankful that he’s terrific.

It’s Monday morning and I feel astonishingly good. Neither the pain nor the neurological symptoms are bad and I don’t feel hungover. I think this means that I have at least one more terrible episode to go before I break this cycle, but I’m going to enjoy it while I can.

Today is the first day in almost two weeks that typing hasn’t been painful. I’ve missed blogging so much that this post was my first priority. Next is a bubble bath. After that I’ll write about my visit to the new headache specialist, my musings over the weekend, the last two editions of the Carnival of Compassion, and all the news I’ve missed. (That’s way more than a day’s worth of blogging… I’ll try to not bite off more than I can chew.)


You Pay for What You Get

Saturday I drove the 2.5 hours to my sister’s house so I could spend the rest of the weekend with her family and my dad, who is visiting from Phoenix. It was a hard week and I didn’t know on Saturday morning if that day’s headache would get better, worse or stay the same. Thankfully it got better as I drove; we had a nice day and all tucked in to bed by 10 p.m.

Which is when I realized that I didn’t have my glasses with me. Or a change of contacts. I wear daily disposable contacts which don’t “keep” overnight, in my eyes or in solution. And my eyes are really, really bad, so I knew my sister’s optometrist wouldn’t have any in stock, nor would I be able to do anything other than stare off into space the next day.

My only option was to drive back home right then. Not too much of a problem because I was wide awake and don’t normally fall asleep until midnight. Except that when I hit the road I remembered that I’d already taken my meds, including the ones to help me sleep. I stopped at Safeway for supplies, then had to decide which was worse, going to a rest stop at midnight because I drank two Frappucinos or taking 200 mg of caffeine.

I made the wrong decision by starting with the Frappucinos, which were so sweet that I couldn’t get halfway through either one. So I took the caffeine pill.

The drive went fine. I wasn’t wired, nor was I falling asleep. It helps that I love road trips and I had six of my favorite band’s CDs in the car. But the whole time I wondered how much I would pay for messing with my body so late at night.

Sunday morning was promising. Hart and I went out for coffee and bagels, after which I had no energy and an ugly headache. I took it easy all day, hoping that I could ward off any more damage. Ha!

The pain was high when I went to sleep and I woke up on Monday with lie-in-bed-wanting-to-scream-but-not-daring-to-move pain. I hate to tempt fate and say that it was a 10 (Do I really know what the worst pain imaginable is? If I call this one a 10, will the next one go to 11?), so I’ll call it a 9.75. Needless to say, it was a terrible, no good, very bad day. Amazingly, this morning the hangover is pretty light and the pain is only a 3.

Of course I’d pay for the energy needed to drive home on Saturday night. That’s just the way it goes (see the spoon theory). I hoped sacrificing Sunday would be the only toll, but that was wishful thinking. I expected three or four days of 7 or 8 level pain, not one of 7 and 8 and the next of almost 10. I guess it all evens out, but I thought the give and take was more predictable.

As I type, I feel the shadow of a hangover growing. Maybe today won’t be as easy as I hoped. Especially because I’ll spend the entire day reminding myself that I’m paying for what I got.

Meds & Supplements

Speedy = Smart

Three weeks ago I decided what to send my mom for her birthday. But I never bought it, even though I really wanted her to get it on her birthday and for her to have something to open, not just a phone call telling her about it.

Monday was the last day possible day I could make this goal. I didn’t wake up until noon, so I had to rush to shower, set up an account online with FedEx, buy the gift certificate, get a card and FedEx it by 3 p.m. Actually, I needed to send it by 2:30 so I’d have time to go to a nearby bakery to get a latte and cheese-filled brioche for dinner.

I made it to the Fed Ex drop box at 2:15, but still feeling rushed, I parked and walked to the box on high speed, then turned around and sped back to the car.

As I drove away, a woman who had been sitting in her car, which faced the sidewalk I charged down moments before, hopped out of her car and waved her arms at me, indicating that I should stop. She came to my window and said that she was a teacher. She then told me that in her 30+ years of teaching, her most intelligent students were the ones who walked quickly. Thus, I must be very intelligent and she admired my purposeful walk.

I didn’t have the heart to tell her that I was so amped up from my new meds that I couldn’t do anything fast enough to quell my energy. I was all but bouncing off the walls.

In any case, it was very kind of her, but also one of those strange moments that make up an interesting life. Next time someone tells me to slow down, I’ll let them know that my intelligence makes it impossible.