It’s been quite a year! Now that I’ve reached my “goal” of going a year without having my hair cut, I’m now ready to get it shaped up and “styled”. I have to admit though; I like it this length. I never thought I’d like it short, but it has its advantages. ;) I felt like I was having a bad hair day today, but as soon as that thought crossed my mind, I laughed and told myself, “I’m glad I have hair to have a bad hair day with!”
I have been cane and walker free since Saturday, February 4. I thought I was going to be using the cane a lot, but I just went cold turkey. This does not mean that I’m walking normally though. In fact, over the past week, I’ve seen some declines in my walking, but, at the end of the day, I can truthfully say I didn’t use a walker or a cane to get around and I didn't slip, trip or fall. I call that success! Sometimes though, walking is painfully slow. Take one step. Stop. Take another step. Stop. And on and on and on. It's not automatic yet all the time. Sometimes, it is, but more often than not, it's not! I went to the store "Tuesday Morning" this past Saturday and there were NO handicap parking spaces. I decided to park in a normal space and walk in. This was the first time I had to cross over traffic to get to a store while walking with no assistance. It was painful. If you had been there to witness it, you would have asked me what’s wrong or if I needed help, but thankfully, I was alone and there were no people to distract me. There were also no cars coming when I had to cross over to the store. It took me FOREVER, but, with God’s grace, I did it and I didn’t fall and I didn’t have to get down and crawl – ha!! Once I got in the store, I didn’t get a cart. That in and of itself is monumental. I ALWAYS get a cart to hold on to. I walked the whole length of the store and back – no cart, walker or cane. I even, by the grace of God, made it back to my car without falling. Once, I got to the car, I took a picture of where I had just come from. It's not far at all, but believe me it was far enough for me and I was praising Jesus I made it!
My co-worker, Sarah said to me a week or so ago, “This was the dream, wasn’t it? This was the goal.” Yes, Sarah, it certainly was and is. It’s still surreal to me that I can walk with no walker or cane. It’s like being blind and being able to see again; being deaf and being able to hear again. It is one of the greatest gifts the Lord has given me and I’ll thank Him until my dying day. I even took a picture of my feet because I have never seen them so straight!
I was reminiscing this past week and remembered what my mom said to me after I had just gotten the diagnosis and the reality that there was nothing that could fix it. Doctors could only treat the symptoms and try to stop the progression of the disease. Mom said that I should never give up hope. She said that every day new medications and new treatments are being born. She told me that day that I never know what might happen in 10 years or so. Was she ever so right!! Ten years down the road and deep brain stimulation was born. Thank you, Mom for your wise, encouraging words!
Like I mentioned above, my walking hasn't been the best the past week but I still did it! But because walking wasn't the best, today I decided to turn up the electricity in my deep brain stimulation device. Dr. Tolleson had set it at 3.50 volts. I sat on that level for the past 2 weeks. Today, I turned it up to 3.70 volts and to be honest, it’s been one of the worst walking days in the past 2 weeks. However, I did not fall. So, if I can stand it, I’m going to stay on 3.70 volts and see how my body responds. It usually takes at least 2 weeks, sometimes much longer, for the electricity to "do its thing" in dystonia patients. So, I have to be patient! Today may not have been the indicator for what’s to come. But if it is, I can always go back to 3.50.
It’s taken me a year, but I’m finally understanding what’s going on with deep brain stimulation. There are 4 (or maybe it’s 5 – I can look it up in my notes) “nodes” that are implanted deep within my brain. I cannot control which node I’m on, only the doctors can control that. They are the only ones that can move me from one node to another. What I can control is how much electricity I can give myself on each node. I started out on node 1 – this node is the farthest node out from my deep brain, but still in my brain. Then I was moved to node 2. That’s a little closer to my deep brain. On January 31, Dr. Tolleson moved me to node 3. I do believe node 3 is the node for me, but I guess that remains to be seen! :) Dr. Tolleson gave me 6 “notches” on the node he programmed that I can move the electricity up on. Since I didn’t move up any last week, I decided to move 2 notches today, which leaves me only 4 more to go. This deep brain stuff hurts my head – and in this case I don’t mean literally! I mean, when I start to think about it, I just have to praise the Lord that He created people who have brains to come up with this stuff because it’s way beyond my education level!
While today wasn’t as fantastic as I was hoping it would be, it’s a thousand times more fantastic than last year at this time. I stand and walk in AWE of how great God is. We sang the song “Came to My Rescue” by Hillsong on Sunday at church. We’ve sung this song many times, but Sunday, I got choked up singing, “I called You answered. And You came to my rescue”. That’s exactly what happened. I called and God answered and came to my rescue. Many of you know how much I love Garth Brooks’ music. I’ve been listening to him while working out and there is a line in his song, “The River” that I was reminded of again. I absolutely love it: "And there’s bound to be rough waters, And I know I’ll take some falls, but with the good Lord as my captain, I can make it through them all.”
I am so undeservingly blessed. God is amazing and I continue to be in awe of Him. Through the good times, through the bad times, through the quiet times and the loud, through every second of every day, GOD’S GOT THIS!!!
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