The Elusive Hammer

Six months to the day I was able to once again experience that little jump in my leg when the doctor hits your knee with his hammer. This has really been the only test I've had to monitor the progress of GBS and I feel like I have finally turned the corner. I still have more recovery; I'm not working full-time, I'm still in Physical Therapy and am working on my strength, balance and endurance, but finally that doesn't have to define me.

I'm ready to be defined as the woman with the two great adult children that she loves to spend time with. The artist, drummer, chocolate lover - anything other than the one with that freaky syndrome that nobody had heard of and was secretly glad it didn't happen to them.

So in order to skip forward into the sun, I've decided to stop updating this blog. I've read enough Vampire Porn I may write a book so I can add writer to my list or continue the Community Ed painting classes. I also have a few more drumming classes to take. Whatever I decide, if it fits in a blog and you are interested in more ramblings I'm happy to let you know. Thank you for your comments on the blog and to me personally, they helped this journey dance along that much better!

"You never know how strong you are, until being strong is the only choice you have." - unknown

Ch-ch-ch-chia!

I have had trouble posting. I feel like my progress is still slow. Friends that haven’t seen me for a few weeks or a month say I’m doing great. I feel pretty good. I have really focused on my health and coming from me you all know this is very new. My physical therapist has been great at helping me build my strength. She considers me one of her “high-functioning” patients. This is very good for my ego, but makes me wonder how low that bar is set. The one exercise I can’t seem to master is standing on a couch cushion with my eyes closed. I keep telling her I’m not sure I could have done that before GBS but she promises me I could. I would be interested in how many of you can. Of course I would also be concerned if many of you have been doing this in your spare time, but I guess that would be a different conversation.

Sadly I’m still eating large amounts of the girl scout cookies… but I am trying to cook more. I have found some great recipes on Pinterest – Carmel bars, lemon bars, chocolate coconut pie. Again, this is not helping the healthy eating so I decided to balance all of this with Chia Seeds! (Yes they are the same as the Chia Pets) These are little miracle seeds, high in Omega -3’s, Fiber, Protein. I could go on and on about them but I’ll let you Google it for yourself. I put them in my cereal, protein shakes, eggs, everything I can. I have learned I can’t add them to Diet Coke. That was a bad experiment, looked like something between snot and what my dog had coughed up. I wouldn’t recommend that. Otherwise they are wonderful! The best part, if I stop eating them I can grow my own pet!

I still get tired pretty easily so I’ve been looking for activities to stay busy but not over exert myself (that is a nice way to say get my ass off the couch). I found a yoga class that meets on Monday nights in my neighborhood. She can’t possibly be ready for yoga? You are right, but this is Laugh Yoga. For 45 minutes I hang out with 30 other strangers and laugh. Laughter Yoga combines laughter with Yogic Breathing (Pranayama). Once I read this, I knew I was in!

”10 minutes of healthy laughter is equal to 30 minutes on the rowing machine. Laughter is the best cardio workout. As an exercise it has similar benefits as compared to any other aerobic activities like jogging, dining swimming and cycling.” 

Is anyone really surprised that I would find a way around actually jogging? Whether I had GBS or not? I will keep you posted on the benefits of Laugh Yoga and Chia Seeds. This could be the beginning of a whole new healthy me, as long as it doesn’t get in the way of my Diet Coke.

Cake anyone?

A friend mentioned that I should be tracking my progress so I could look back and see that I really am progressing. At the time it did not sound like a good idea. I thought it would read something like:

• Day 1 – Sat on couch
• Day 2 – Sat on chair, ate all the girl scout cookies in the house.
• Day 3 – Moved back to couch, ate the chocolate chips by dipping them in the hot fudge sauce.

Though all of these things are also true, I realized there was another way to document my progress:

Saturday will be 100 days since I first noticed my toes were numb.

• 96 days ago I was diagnosed with GBS.
• 82 days ago I was sent home after two weeks in the hospital because I was able to walk 264 feet with a walker, climb three steps, and dress myself. Ah the good old days! I miss the days when the bar was so low…
• 75 days ago my neighbors had to help me back to bed because I was being all wild and crazy by showering AND unloading the dishwasher on the same day.
• 45 days ago I walked around the block for the first time.
• 25 days ago I walked ½ mile
• 14 days ago I walked ½ mile with just a cane

Ok so that is a little bit better way to look at the progression and if I treat Saturday as a 100 day milestone then I can justify CAKE! So if anyone is around I will have cake, if everyone is busy – refer back to Day 2 and do not worry about the cake getting old. I do need new goals and now that I have started physical therapy I have a whole new exercise plan that seriously cuts into my snack time. I’ve also started working on the house again. Below are my before and after pictures of the dining room chairs. 

On Saturday I will also be saying good-bye to my walker. I have not figured out how to move the coke holder to the cane, but have decided it will be ok to give up the walker anyway, bell and all. So between the updated chairs, the loss of the walker, and cake it has been a busy week. Thank goodness I know where Kris hid her girl scout cookies in my basement!

Flossing

I started Physical Therapy this week. I'm actually in pretty good shape (again remembering the bar is pretty low). I have been doing the exercises that I was sent home with ten weeks ago and have added walking and drumming to the schedule. My lowest scores were in balance, standing on one leg, walking backwards and my hamstrings. You would have thought I had been drinking before the tests!

The therapist said we need to "floss" my nerves. Doesn't it always come back to flossing? It isn't enough that you have to get that question every 6 months in the dentist's office but now I'm getting it in PT? At the dentist there is always that moment of, do I just tell them I'm flossing? Can they tell? But then I tell the truth, proudly admitting to flossing at least once a month and suffer through the lecture. So now I'm back to flossing again. The plan this time is to stretch my muscles to get the energy and oxygen around the nerves making them want to grow. So far everything I've been told and have read is that I can't "make" my nerves grow, but I also know I'm moving into a dangerous area with atrophy so I'm going to floss those nerves until they grow or I have six-pack abs. Either way its a win-win.

My legs are still my weakest so we will focus on core strengthening. This means I will still have my friends around for a bit. Because of this, I have upgraded them to better reflect who I am. Of course you all know the bell and cup holder was added to the walker. I also changed out the cane for one with polka dots! I think it says Janis so much better than the standard issue. What do you think?

Crabgrass

I apologize for not writing. It was difficult to come up with witty ways to say, "Yep, still just watching the grass grow." Today I saw the Neurologist for the first time since leaving the hospital ten weeks ago. The grass isn't growing as I would like. The first indicator will be my reflexes (who knew that hammer told so much?)

A reflex is a simple nerve circuit. The hammer causes sensory neurons (nerve cells) to send signals to the spinal cord. There, the signals are conveyed both to the brain and to nerves that control muscles affected by the stimulus. The muscles may respond to an appropriate stimulus by contracting. In so doing, they help to assess the integrity of the nerve circuits involved. I've got nothing! Zippo. Nada. No reflexes in my arms or legs. I was really hoping today we would find some today, but no. Maybe if I had planted crabgrass I would have better luck. 

So now we are adding physical therapy twice a week because even though nothing can be done to grow my nerves, my muscles are shriveling up while waiting to connect to their long lost nerve endings. This will not stop me from attending the most amazing Taiko concert at the Ordway tonight. If you haven't gone, get your tickets - this is the last weekend! 

Dunn Bros

I made it! It is .3 miles and I enjoyed my first Carmel Mocha Latte and muffin with my dear neighbor last week. Annie even came inside with us and helped clean up the crumbs. We ran into another woman with a walker like mine, but she had not decked hers out all all - what's up with that? She didn't even have a bell, how will people know she's passing on the left if she doesn't have a bell.

Since that first walk I have added additional blocks and I'm up to .5 mile. I like to include Dunn Bros in my walk because I wouldn't want to go too far without having a place to stop and rest, but in reality it is just for the Latte with whip cream.

My next goal is to get in the office two days a week. I also need to increase my drumming time, as you all know the recital is June 22-24 and you won't want to miss me playing without a walker! Though who knows, maybe I would play better with the walker? I guess I better think about that...

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…