16th Birthdays

Today we travel to Beaver Dam to gather with the Janesvillians and also my UG family to celebrate the two new 16 year-olds in our family. Elizabeth was born first on 2/26 and then almost 2 weeks later came Tyler. They have both grown up to be respectable, good people with great senses of humor, and being together with both of them is always fun. My sister tells me she has a video she took of them playing (along with friend Erik who also turns 16 this spring), and she is going to play that for today's matinee.

I can't wait. To hear their little voices and see their small selves will really bring forth the full realization of how much time has passed.

The next chapter is driving tests. Liz has hers on Monday. She's ready. This is a bit of an inside joke so forgive me if it's not making sense---she was born ready.

Bathing my Brain

Yesterday was a weird day. I had a nice morning...some french toast with Laura before school, an episode of The West Wing while I cleaned up the kitchen, a warm bath, a good long phone call with Sarah. And I found my mother, who really was gallivanting and heading to a casino on her way home from up north...

Then all hell broke loose when my pain ramped up to an unbelievable level. It was the worst it's been since April, 2008. One thing that is true of people with TN, from what I've read, is that we all know exactly the date and moment that pain first struck. For instance my very first shock happened on the Sunday, Sept 2 (Labor Day weekend) in 2007...but I digress.

Back to yesterday--because I could not put my lips together without severe pain, I was unable to speak. I could not drink because the touch of the liquid inside my mouth was setting off those triggers. The shocks were repetitive and paralyzing, and I was really and truly beside myself. I made myself get really calm and sat in the recliner and tried to doze, and when Jeff came home from work in the early afternoon, and I wrote down everything that was going on and he called my neurologist's office to inform them and ask what to do. The other option was going to the ER, and I was really considering how nice some sedation would be. But, Dr. R called back himself, and he and Jeff had a thorough conversation about what to do.

Now I am taking 200mg of dilantin 3x per day (up from 400) and adding an extra 600 of the carbatrol per day (he actually recommended an additional 1200 per day, so there is still room to go up if needed). This is a huge jump, but within a couple of hours I was so much more comfortable and was then able to have a nice evening. It continues to amaze me that two pills made so much difference so fast. Now I have to keep taking them so the blood levels stay high enough to knock down the pain.

Of course, I am kind of stoned. I move slowly and am a bit off kilter. I took a walk with Chance this afternoon since it was almost 50 degrees and it seems like a waste if I don't go out in that. I tried to walk a straight line but was not really too successful. Surprisingly I've been awake all day, just puttering, even though I feel like I could drop off at any moment. My thought processes are slowed down quite a bit. It's taking a really long time to write this... Still getting some shocks but they range anywhere from 2-5 as opposed to the 10+ kinds I was having yesterday. I can live with that.

So the moral of the story for today is more medicine = less pain.

PAIN is a pain

If I write about pain every time I post something, nobody would want to read this. I sometimes try to give a basic overview of how things are and get on to another subject if I can. That's sort of how life with trigeminal neuralgia is anyway--pain can either control your life or not. In the past several weeks my pain has been growing more frequent and more severe but not getting so in the way that I couldn't still do some of the things I wanted. Like work--I have actually had several really nice part-days at work seeing hospice patients. I've even been thinking, well, it's GOOD to have this pain because it's a reminder of why I'm having surgery. And when I wake up from surgery and don't have this pain, I will know the surgery worked.

Well, now I am thinking I'd prefer to have no pain at all and even if it is only 2 weeks to wait until surgery, this is a really sucky way to live. I'm on my 4th day of really bad pain. It hurts in my teeth again, I'm getting jolts and zaps and what I'd have to call "attacks" throughout the day--with the usual hygiene things but also with moving my mouth a certain way, moving my head, changing position from lying to sitting or reverse, and talking. Getting kisses is a tentative, right-sided operation and giving them almost out of the question right now.

I have had another med increase. More neurontin, which helps the burning pain but not so much the electrical zaps. It's also sedating. I have about an hour or two in between med doses when I feel better, but otherwise it's not good. I am going to need more help than this.
I am staying as quiet as I can since it hurts to talk. I am trying to stay positive and calm, knowing that I can weather this. But I have things I want to do before surgery to prepare
myself and my family and it's really hard to think about things besides how bad the zaps are going to be and when the next one is coming.

My prayers are for strength and patience and the ability to see further ahead to a place of good health where this will all be in the past. If you are a praying person, I'd love some help with this. Thanks.

are YOU my mother?

One of my favorite books as a child (and as a grown up) was Are You My Mother? Remember that one--where the mother bird is sitting on her egg and it starts to move and she realizes that she better go find some food, and while she is gone her baby hatches and wonders where his mother is? So, not one to just sit around waiting, he gets down out of that tree and goes to find her. He asks various animals and machinery if they are his mother and they all answer something like, "No, I am not your mother. I am a cow. How could I be your mother?" Undeterred, he moves on and keeps looking, but it becomes more frustrating until at one point he yells something like, "I did have a mother! I did! I did!" Then the SNORT picks him up and puts him back in his nest...and they live happily ever after.

Well, I am thinking about that book today because it is my birthday and I am looking for my mother. I like to call her on my birthday around 8am to wish her happy birth day and thank her for bringing me into the world.

When I called this morning, I got her answering machine, and that's just not the same as hearing her laugh and relive a memory or two. It was snowing...my dad called his parents and said "I'm a dad again!" She would have named me Lisa Marie, but for some reason he prevailed with Lynn Marie, which I have really been grateful for because of Elvis and everything.

I think my mom is out gallivanting. She was up north on a short trip because her cousin died and they had the funeral yesterday. That was probably like a sort of family reunion like many funerals are.

I'm sure she'll call me later.

The DATE

Isn't this what we've been waiting for? I got the call this morning, with no fanfare at all. Just the very, very nice Erin letting me know in her friendly way that they have settled on Monday, March 9 for my surgery.

And I have to check in at 5am.

If I tried to write any more of my feelings about finally reaching this point, I think it would be hard to find words to convey the complete mix of relief and trepidation. I'll save that for another time.

something new is going on

This blog is called "beyond the pillbox" for a couple of reasons. Mainly I wanted to convey that life is moving forward despite (or because of) this beloved pillbox of mine. But also that sometimes it's really hard for me to look far beyond this container of medicine--especially because late doses mean pain and then further problems evening things out again. It's also been hard to look beyond the $$ I spend on these medications and also hard to face the side effects every day as well as the typical cycle of feeling the pain coverage wear off. That's where I am now. For the past several weeks I've had pain every day---usually manageable (definition: it does not make me cry and other people can usually not notice I'm having a problem).

Now I'm developing something new, which is actually kind of interesting to me. It's a new electrical snap kind of pain. It often happens out of nowhere without any apparent trigger, and this is really different from all the other kinds of pain I've had (zaps, jolts, sizzles, jabs, etc.) The only thing that does seem to trigger it is lying down, which is bothersome to me because until now I have had no problems with sleep. The last few nights I've been awakened by this, just for a couple of seconds, and then I'm back to sleep until the next time.

So because surgery is not that far away (though there's no confirmed date on the calendar yet), I have been resisting the urge/need to increase some of the medication to keep things better controlled. It seems like a better justification of the need for surgery if I am actually experiencing pain, or at least that is what I have been telling myself. That way I'll be better able to tell if the surgery was successful instead of waiting the month or more afterward when I get to go off my medications. BUT, I am just hoping and praying this does not get worse before it gets better!

Games, etc.

We've instituted Game Night at our house on Sundays anytime after 3pm. That's when Clara, my godchild, wakes up from her nap at her house about 5 miles away. Really, anyone is welcome, but we have talked with her parents about needing to get together to play games, and now we will just have a standing date (like piano lessons, basketball practice, or regular massage appointments). So if you are nearby on a Sunday, please join in.

(Being 2, Clara doesn't play games like this yet, but she provides entertainment in her own ways).

This time we played Bananagrams, which is a game of speed and patience. You might get the letters you need, or you might not. You can choose to dump a letter that's not working for you, but in exchange you must take 3 letters back. You are working against yourself in terms of getting your letters into interconnecting words, but you're also working against the rest of the players because when one person uses us all their letters and picks a new one, everyone else has to pick a letter too. That might mean you have to change things to make it fit, or just be patient and see what the next new letter brings. It's addictive and can also cause a bit of silliness, as you might be able to tell from the picture above (that hand was NOT a winner).

We also played a game of VisualEyes, which is an awesome game. There are about 20 blocks with pictures of very simple things (a sun, tree, person, cap, dog, fish, etc.) and each player has to make words by joining two blocks together (ie: sunfish). They are not always that straightforward and that's where the fun comes in because you see how differently people's thought processes are. If other players get the same word you do, it doesn't count for anyone. Scoring is easy--just one point per valid word, and judging is informal. Inside jokes even count as long as the other person is there to vouch for it and tell the story behind the joke.

Another really fun game we played at Christmastime with my sister's family was Bafflegab. It involves five cards laid on the table, each with a different word. Then the beginning of a sentence is read aloud and every player has to finish the sentence, including all 5 words on the table in a way that makes some kind of sense. We were marveling at how creative and funny the answers were. There's some kind of scoring system, but this game is just fun on its own.

Even by just writing about this I feel happy and better about my life. It's been a long winter, and a long stretch since life's felt good. This is a nice reminder that we don't have to be so serious.

Liz is becoming a very fine horn

It's report card time again and both girls are doing great and bringing home good grades. They have computerized report cards through a new system now, so when a teacher wants to include a comment, it should show up after the grading details. However, there seems to be a glitch. It will only show the first so many characters, then abruptly ends. So that is how we came upon the news from Elizabeth's band teacher that she is becoming a very fine horn. We suspect he really means horn player, but this has caused me a great deal of delight.

Oh, Froedtert called. It was the very, very nice Erin telling me that they are pretty close to finalizing my surgery on March 9 or 10 (a Monday or Tuesday). She was wondering if that would be all right with me. I assured her that it is, and she'll call back with the final plans. That's really just a month away. Starting to think of the logistics already, but will try to take one thing at a time...

Random Thoughts

Well, things settled down again for a couple of days, which was nice. Then today I had some zapping in the morning and approaching lunchtime, which I accepted since it was getting near the time to take my meds. Then as the afternoon wore on, it was intensifying a bit and at almost 4pm in the midst of a busy day of working and then picking up kids and such I realized I had forgotten to take my medicine at 1pm. So I guess that serves me right.

Work was great today. I visited with 2 patients and one caregiver/spouse. They were good visits, filled with the things they needed to talk about, all which related to loss of identity and role changes in families and trying to accept their body's changes. I could understand these things so much better now than a year or two ago. One person spoke a lot about adopting a way of seeing things and being very positive and surrounding herself with people. She was remembering a friend she had who'd been quite debilitated over time with MS, who was interested in life, maintained friendships, and genuinely had a happy disposition through it all. This lady I met today really holds her friend up as an example of how she is trying to be. That really hit something in me. I know that a positive attitude is a huge factor in getting through tough circumstances, and I think I try to get there too by staying invested and active in my family's life and holding on to friendships, but I don't think I'm doing well enough at it. Plus the skeptic in me says, well maybe that woman just didn't let others see her pain...

I have seen so many people who behind the scenes let out a lot of pain and distress to me because I am a safe person to do that with. They say things they don't say to their family, for fear of making them sad or burdening them. I appreciate being able to receive that from them when they need to unload or sort something out. During this whole TN situation I have been able to unload my worries and my fears on a whole list of people (including God, who definitely does not deserve to be in parentheses), and they all help me come back to the only thing I know for sure--all any of us has is TODAY. That realization and a few nice deep breaths will always get me back on track.