Word-a-Day Toilet Paper

Is Word-a-Day toilet paper still made? If so, I had the best word yesterday, "perturbation". There are several definitions for this word, my favorite is:

1. A small change in a physical system, most often in a physical system at equilibrium that is disturbed from the outside.

I was talking with a friend and we were discussing ways to help nerves grow. Based on her experiences, I need to be exposing my brain to new experiences to keep things growing. This makes sense when you read articles about myelin growth within the brain. If I take that concept further - to my arms and legs, I need to be doing more than my stretching exercises. I need to expose my arms and legs to new experiences to stimulate the nerves to grow. So I've been taking my limbs out on adventures!

I definitely think there is some truth to this theory. I have attended drumming class for two weeks now and my Dr could finally detected a small twitch in my right arm. Still nothing in my legs, but we've just started! Yesterday I let the legs try driving and walking at the mall. Each time I make a change to the physical system my limbs are used to, I'm hoping it will stimulate new growth. It is easy to become comfortable walking around the house, knowing where all the barriers are. It is a whole new challenge to maneuver through the shopping mall or carry a lunch tray while leaning on a walker. I'm excited at all of the possibilities; should I expose my limbs to an R movie, to a DQ Blizzard, a trip to a beach? I just see many new options! Tomorrow night it will be the Taiko performance at Dreamland Arts If you have a chance to go it should be pretty amazing! I'll let you know how the "twitches" are afterwards!

Next goal - Dunn Bros!

This morning I made it all the way around the block! That was with Annie pulling the walker, and it was -10 windchill. I think I did it and walked faster than before because it was so cold. Each time I slowed down to rest, Annie would take off for home and since she was tied to the walker I really didn't have much choice. As you all know this has been a goal for several weeks, so my new goal is coffee at Dunn Bros! It is about a three block walk one way, let's see how long it takes to order my Carmel Mocha Latte with whip cream!

The other big news over here is I found a Diet Coke holder for my walker (would you expect anything less from me, really?) My friend Rae Ann had found loaner medical equipment for when I first came home. This was so great since I didn't know what I would need or for how long. The one thing I did find out is I will need the walker with the built in seat for quite some time. So this is something I can now take my time and go out and find the right one without being all stressed out coming home from the hospital, and decorate it with a Diet Coke holder! So there's my little hospital hint for you all to throw in the back of your minds that you will hopefully never need to use.

I'm off to mess up my house for an awesome group of work friends that are coming over to clean for me. Stay warm!

Great Parking Spot!

I received the handicap sticker for my car this week. This was strange, it was another stark example of how my life has changed and this isn't just a bad cold I'm recovering from. I get asked many times a day how I'm doing. I feel blessed I have so many people that care about me (or else they are just being polite because what else do you say to the gimpy one coming towards you with the walker?) I feel as though I'm disappointing some, I should be progressing right? I keep hearing that I'm looking better. (again, this could be a phrase that people use because they don't know what else to say to the gimpy one, but I'm just going to go ahead and believe it anyway!) so how can I say there is no change? Am I not trying hard enough?

What I have learned this week is I need to measure progress differently. Yes I know we can make the charts delivering bad news look good if we make it pretty enough, but hopefully I'm not saying that! My body did not progress this week, physically. But I gained confidence in my abilities and limitations. I learned that if I drum for part of a class on Saturday, no matter how much fun it is, I will not be able to move the rest of the weekend. I was reading up on a GBS site and did not know that a particularly frustrating consequence of GBS is long-term recurrences of fatigue and/or exhaustion as well as abnormal sensations including pain and muscle aches. These can be aggravated by ‘normal’ activity and can be alleviated by pacing activity and rest. Well we all know how well that's going to go over with me! I also found out I can walk about a half a block without my walker! I really wanted to know how far I could go without depending on it. From this exercise I learned I better figure out a plan for when I turn around and need to get back to the house, but this is part of learning my limitations and something I won't be doing again for awhile :-)

The biggest lesson this week has been I have many friends that want to help me, but I have to be willing to ask for help. I suck at that. So thank you to all of you who just stop over with a little left-over soup, a visit, a comfy chair (no kidding!), a book, and a ride. Bonus! I can get us a great parking spot with my shiny new handicap sticker!

Taiko

Part of what I crave is normalcy. I'm not working, it's been the holidays, and I'm spending a lot of time focused on things I don't normally focus on - walking, eating, showering. So today was a very exciting day. Today my Taiko class started again! This is the first event in six weeks that signals my life is getting back to normal. I carpool to class with some incredible women who were nice enough to move the meeting point to my house and pick me up. 

It was interesting because many of the other students hadn't known I was sick. I suddenly saw an opportunity to not be sick, to escape. I can stand for short periods, even walk without the walker a bit. So I took my regular spot behind the drum just like I always do. After 8 short beats it became very apparent to me that I was not better. I wasn't able to drum as I had hoped, but I was challenged in new ways that never would have happened if I hadn't gone to class. 

Maybe I need to stop trying to get back to normal and embrace my new world and all the hidden opportunities. I mean, who hasn't wanted to take that Target Scooter for a spin just once?

27 Books

I’ve read 27 books on Kindle and several more of the old-fashioned paper kind, watched countless movies and a bunch of bad TV (I don’t have cable). I’ve made too many online purchases (though I do love my new iPad) and have actually started thinking about doing my taxes. It is time for a change. Sadly I went to the doctor today and my schedule isn’t the same as the doctor’s or my body’s schedule.

I found out the exercises I have been doing really are just humoring me. There isn’t anything that can be done but to wait for the myelin to grow back, kind of like watching water boil. Just like plastic coatings insulate electrical wires, myelin sheaths surround nerve fibers in the body. In addition to protecting the nerves, these sheaths carry messages to my muscles. This is what the GBS ate up. The exercises are an attempt to keep what muscle I can until the nerves grow back, but they are not speeding the process along. Nothing will speed the process along… I must be patient. Those of you that know me know expecting me to be patient is a very sick joke.  I had very specific goals – rest in December, gain my strength back through January, fully recovered in February. I also had plans to spend the rest of my life with the man I loved, but as we all know plans change.

So send me your book and DVD recommendations. I love all the visits and meals; they have made this so much more bearable. Next week I will be able to work from home on an extremely limited schedule, much less than I had hoped, but it is a start. I’m looking forward to the continued warm weather to practice walks in the neighborhood. I may have to start writing about something other than health updates as these will be slow in coming…