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A Stimulating Week

Thanks for all the messages of support you’ve sent. Knowing you’re backing me up is very comforting. And “talking” through my thoughts and pros and cons is helping me get sorted.

I’m still in pretty good spirits, but am agonizing over my options. Yesterday was the first day I was painfully bored, which isn’t too bad for having sat on the couch for more than a week. I’m in awe over everything I’ve distracted myself with since Sunday. I have:

  • Watched the second disc of Pride & Prejudice (I now know why women swoon at the mention of Colin Firth in this miniseries), The Money Pit, The Pick-up Artist, Splash,
    The Big Lebowski, Joe vs. the Volcano, The Importance of Being Earnest, Big, several Scrubs episodes, the first episode of Absolutely Fabulous, and lots of HGTV
  • Read The No. 1 Ladies’ Detective Agency (the first in the series), Summer Sisters, half of a memoir and travel book about New Zealand, and started White Coat: Becoming a Doctor at Harvard Medical School
  • Studied Retire Worry-Free, Better Basics for the Home, Green Building Products and various Pacific Northwest travel books
  • Perused issues of Dwell, Better Homes & Gardens, Cooking Light, Sunset, Seattle Magazine, Newsweek and Wired
  • Browsed countless catalogs — you name it, I get it
  • Eaten a lot of cheese, including cheese pizza and cheese bread, macaroni & cheese and cheese breadsticks, and grilled cheese — I’m craving it something fierce
  • And have let myself off the couch to blog, pay bills, do some dishes and so on

An impressive list, huh? No way am I going to make all those Amazon links, but if you follow these links for books and DVDsand buy something, you’ll help support this blog.

I’ll let you know how Monday’s appointment goes and you will certainly get more of my mental arguing. I go into the weekend with a good attitude: Hart’s holding out hope that the existing lead can be pushed back into place. I don’t know if that’ll work, but it’s a soothing thought.

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Does it Even Work?

I can’t stop wondering if my nerve stimulator reduces my pain at all. In the first six months I had it, I had a three month period with no severe pain. Not one day, or even part of one day, was spent in bed because of a headache. I cling to that time as proof that the stimulator helps me, but the evidence hasn’t been strong since then.

Maybe I feel better because I’m not working a stressful job that I hate, nor am I depressed. I eat real food; even when I eat junk food it is made of simple, obvious ingredients (my favorite cookies contain flour, sugar, butter and real vanilla extract). I no longer have frou frou coffee drinks, which are full of artificial flavors and who knows what else, almost every day.

I’ve been fiddling with my stimulator the last two weeks. I’ll leave it on for a while then turn it off for the same length of time. It can be from a couple hours to a couple days. Or I’ll sleep with it on some nights and off other nights. No matter what I do, I don’t feel a difference. It’s tough to compare when my pain varies so much in a day, but I have felt no worse with it off than with it on.

It is not uncommon for a nerve stimulator to help someone at first, but then stop working. It’s as if the nerves outsmart the device so they can fall back into their normal (albeit dysfunctional) rhythm. Maybe this has happened to me. Or maybe I just want my body back.

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The Big But

The stimulator isn’t causing me much pain anymore, but…

The leads feel like they’ve moved significantly. I accidentally hit the bottom of my right breast and I could feel the left lead wiggle. When I bend my head forward more than about 20 degrees, I can feel it wiggle.

Because I can feel a vibration when the stimulator is on, I’ve also been able to turn it up and move around to see where it is. It’s up high on my head and way down into my neck. Not good, not good.

So we’re headed to Phoenix Sunday night. I’ll have x-rays and see my doctor and Medtronic rep on Monday morning. I may be catastrophizing, but I’m pretty sure any solution will involve surgery. If the leads stay where they are, I think they’ll just continue to slip when I move.

The next question is whether I will have the leads replaced or have the stimulator removed altogether.

It’s a gamble to have them replaced. The surgery is expensive and some people’s bodies stop responding to the stimulator after leads are replaced. If it doesn’t work, I’ll have to have another surgery to have the device removed. I don’t know what percentage of people have had this problem, but I expect that there will be at least a little more data than there was three years ago.

Having it removed will be like getting a child to give up a security blanket or thumb-sucking. I’m not convinced the stimulator is still helping me, but keeping it lets me think it is. The placebo effect a response that can be seen in the brain, not just wishful thinking. For me feel psychology has an effect too, just like a blankie. Wishful thinking at least calms my nerves.

Having it removed would also mean that I’d no longer have a big box in my chest. More important, I could move freely again. Yoga, kayaking, gardening, yoga, bowling, horseback riding, yoga. I could ride roller coasters and use an electric blanket. I could go through airport security without being patted down, sand and paint cabinets, and crochet.

In my desperation before I got the implant these factors didn’t factor at all. Now they are huge. Not knowing what I would lose — and the pain of the loss — before they were gone is part of this change. A bigger component is that my perspective has changed.

I no longer feel like I’ve run out of options. I don’t expect to be headache-free. I am calmer, less concerned about having a traditional career, not resentful of my housewifely duties. I’ve learned to take care of myself. I now understand that headache is only one of component of my plenteous, messy, joyous life.

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On Asking for Help

Seattle has been home for me since we arrived here, but this week I’ve been longing for my true home, Phoenix. Really what I want is to be near the people I can ask for help — my parents, Hart’s parents and friends who might as well be family.

I’ve got it all figured out. My dad would sand and paint the kitchen cabinets, my mom would cook comfort food and Hart’s mom would keep a steady supply of movies coming. Our friends would bring our favorite Phoenix foods and distract me in any way they could.

We have good friends in Seattle, but I make excuses about not asking them for help. One couple has just had a baby, another is getting married in a month, another is totally swamped with school. I wouldn’t be comfortable making even the slightest imposition.

It’s all good justification, but deep down I know that I if I were in Phoenix right now, I’d have excuses for why my family and friends there couldn’t assist me. I wouldn’t even ask. If I did enlist some support, it would only be from my parents. I like to think that I’m more willing to ask for help now than I was a year or two ago. But I’m pretty sure that the distance is just a convenient excuse.

What’s it about? Vulnerability? Pride? Pretending I’m better off than I really am? All that and then some, I’m sure. Until I figure it out, Hart bears the responsibility of doing all that I need. Poor guy.

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Lead Migration 2006

Today I intended to post pictures of my freshly painted kitchen, but it looks the same as it did on Wednesday morning. Instead of painting, I’ve spent the last five days lying on the couch because my nerve stimulator leads (or wires) started to move.

I felt the first twinge when I was teaching myself to crochet on the 15th. I had some other twinges over the next few days, but nothing strong enough to make me worry. By Wednesday I couldn’t ignore it any longer. Not only did I have intermittent sharp twinges of pinching pain in the back of my head and neck, every time I used my right hand, I could feel the leads shift. That’s not normal.

Last March I knew my leads had shifted because I felt the vibration in the wrong spot. They scooched over a bit and then stopped moving. This time is totally different. I can’t be sitting or standing up for more than 30 minutes before the pinching becomes unbearable. It doesn’t matter if I’m cleaning or walking or using my computer.

And there’s nothing to do except wait until the leads find their new spots and get settled. If the stimulator still works the same when the leads are finshed moving, there’s nothing to do. If it doesn’t or they keep moving, I’ll ultimately have to decide if I want to keep the implant or not.

Instead of thinking about it (or moving around), I’m getting a fix of movies and books. Between 7 p.m. on Saturday and 10 p.m. on Sunday, I watched Baby Boom, Maid in Manhattan, You’ve Got Mail, Old School and the first three episodes in the Pride and Prejudice miniseries. I also read the last 150 pages of one book and the first 50 of another.

I’ve reached my limit of being up, so that’s it for now. I’ll get into more details this week. Before I sign off, I need to ask a big favor — are there any chick flicks that you’d recommend? Generally Hart and I watch all our movies together, so I’m looking for movies that he won’t care if he misses out on.