Ugh. How's that for a start to a blog entry? This past week has been rough. Grant it, I have not fallen - so I'll take that as a win, but walking has not been fun, easy or effortless. I'm a perfectionist and I see things in black and white. Dystonia is not black and white. My walking is not black and white. It drives me nuts sometimes. I don't like having a condition that can't be cured with a drug or a surgery or a therapy. OK, my venting is over with - haha.
As I mentioned in my last post, I saw my neurologist on February 22. During that appointment, he showed me how to turn my device completely off and back on again. My device was off for less than a minute, but needless to say I am convinced that that is what has caused my "horrible" walking this past week. How's that for armchair doctoring?!! You see, I want to blame something, anything on why I can't walk like I want to, when in reality there is nothing and no one to blame; it just is. So, with my non-existent medical degree, I'm "starting over" my two weeks until the electricity reaches my leg/foot/toes. Today marks one week.
Last Wednesday night, I used my cane to get into church, but halfway between my car and the church door, I got "stuck". I'm going to try and explain this the best way I know how, but we'll see if it makes sense. I use the word "stuck" because that is how it feels. It feels like if I make one more move, I will fall, no matter what move that is. So, I almost freeze in place. I feel as if I bend my knee, lift my foot, even position the cane differently, I will fall. In these cases, I almost want to fall, because I feel like if I fall it'll loosen me up. Weird, right?! Anyway, I got stuck and literally felt like I couldn't take another step. Thankfully, my associate pastor saw me from inside and (pausing the class he was teaching) came to my rescue by lending an arm to me. The "funny" thing about this whole experience is that earlier in the day I watched the "Wednesday Wanderings" video he and my dad had done. They spoke about Peter walking on water. I don't know if I've mentioned on this blog before or not, but I most identify with Peter in the Bible. He's gung-ho and yet is a complete mess at the same time. He's always getting himself into trouble somehow or another and sticking his foot in his mouth. That is me to a "T". Anyway, as long as Peter had his eyes on Jesus, he was able to literally walk on water. Once he took his eyes off of Jesus and saw the waves, he started to sink and yelled out to Jesus to save him. That was me on Wednesday night. I was fine as long as I kept my mind on Jesus, but once I started looking around and took my mind off of Jesus, I got stuck. My "crying out" to Jesus was done internally. He didn't let me fall and used my associate pastor as his arms that night. I still had issues walking while inside of church, but I made it without falling. After church, my mom helped me out to the car and then I was done for the night. I went home and laid on the couch. :)
I had my one month post-op appointment on February 25 with my neurosurgeon (rather, his PA). I was determined to walk in without a walker or cane. I did it, however precariously. I don't know if it's my stubbornness, foolishness, tenacity or what, but I have this burning in my soul to prove to people I can walk without a cane or walker. I'm pretty sure I cause myself more stress and worry than I need to by always trying to prove something. Anyway, my appointment went well. I think it took me longer to find a parking spot in the parking garage then it did the actual appointment. The PA cleared me to start working out again and doing yoga. Working out may have been the first thing I did after getting home from the appointment. It wasn't that long ago that I loathed working out. I hated even the thought of doing it. Now, it's something I love. It's a stress reliever. Even when walking is a struggle, I can still exercise. I use a stationary bike, so I can't fall. When I feel like I have no control over how I walk, I feel powerful when I exercise.
When I went out of the house this past week I used either my cane or the walker. At grocery stores, I used carts. There were times that I practiced walking without anything but my own two feet. Those practice sessions went well. It's so weird. I really never know what I'm going to do until I do it. Meaning, whenever I get somewhere and get out of the car, that's when I decide what I'll use (or not use).
Sunday, I used the cane to get in, around and out of church, but when I went to my parent's house after church, I used nothing. I'm convinced that I was only able to make it in to church because once again, my Sunday School teacher was walking in the same time I was and helped me (we seem to be arriving at church at the same time as this happened last week too). Walking out of church, I was doing OK, until the wind picked up and I lost my confidence. Thankfully a friend came right up beside me and helped me. I should have used the walker. Hindsight's always 20/20.
Yesterday (well, actually February 29, but since this isn't a leap year we'll go with March 1) was the 5 year anniversary of having the battery initially implanted which means that that was the last of the DBS surgeries (3 of 3). It wouldn't be for another month (on March 29) that I would have the device turned on, but it was the last of the surgeries.
There have definitely been times and days this week where I didn't have to use a cane or a walker at all. I am extremely grateful for them. I just want them to last longer!! (Have I mentioned before that I'm very impatient?!)
While this past week hasn't been the absolute best, it by no means has been the absolute worst, so I'm praising Jesus for that! It's one day at a time, one step at a time.
Thank you all for reading (I know I tend to write novels here in this space) and for continuing to follow along.
Always remember: God's Got This!
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