I'm now at 2.30 volts. I turned the device up this morning by .10 just like the neurologist said, but I really, really, really wanted to turn it up to its highest setting. I must not have been fully awake while trying to turn it up because I tried using my iPhone. The only problem was there was nowhere to plug the device in to the phone! Ha. Obviously, Steve Jobs didn't think to have my DBS system work with my phone and therefore trying to plug it in to the phone didn't quite work! ;) But I did eventually wake up and come to my senses and use the remote control.
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| This is how I program the DBS system. I have to put the device over the battery and then hook it up to the remote (below). |
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| Yeah, I had to get the instruction book out again! |
As for this past week, I didn't really see any changes, except for one and maybe it doesn't even have anything to do with the device. It could just be me being neurotic and obsessing about whether I see changes, good or bad! But, I'm documenting it just in case it is something so that I can remember to tell the doctor about it.
I've noticed (just a little) that I'm reading names like I'm dyslexic. It's only names (that I can tell so far) that I'm having this problem with.
Here's example number 1: My mom had 3 gift bags sitting on her dining room table and each bag was labeled with a name(s) on it. I read the name on one of them and asked her who Elise was. She just looked at me.
Mom: "Elise?"
Me: (pointing at the bag) "Yeah, who's Elise?"
and then it struck me....
Me: "OH!!! Elsie!!!" (my brother and his wife's dog...yes, my mom bought the dog a gift!)
The second example of this is when I tried reading the birth and wedding announcements as well as the obituaries in the Sunday paper. I was doing the same thing: mixing up letters and having to re-read names to get them right in my head. It's not like it's a HUGE disrupting event in my life. I come to the correct name in my brain within a second or two, it's just a little disconcerting. I was warned that this could be a side effect, but it doesn't make it any easier when it actually happens! I think it would all be a little more bearable if I was actually seeing progress in my walking. But, I'm not - yet. Can you tell that I'm the world's WORST at being patient? Ha! I've had many discussions this week with people about my being patient (or rather my being impatient!). It doesn't make it any easier! Which is why I know God is allowing this to be a painfully slow process so that HIS will (not mine) is done and I will learn patience whether I want to or not.
I got frustrated and sad this past week because Saturday through today have been really bad walking days. I didn't fall, but I had a couple of near misses on Sunday night. People say that it doesn't look like I'm walking any worse (or different), but I feel shaky all over. That's the best way I can describe it. But, this too shall pass and I must state that none of this is worse than anything I experienced before the DBS procedures. I had just hoped that I wouldn't be in the same exact place I was before the surgeries. Maybe I am and maybe I'm not. I'm not the doctor, so I'll let him decide. It's just frustrating because I so want to be on a moving-forward journey and not an uphill, valley, watch-out-for-that-rock, uphill, valley, watch-out-for-that-boulder, uphill, you-gotta-go-around-the-lake, watch-out-for-that-bear-in-front-of-you, uphill journey. BUT, I'm trying to look at it like an adventure, because what else could it be described as?! I'm not exactly sure what's going to happen from one moment to the next, but I shouldn't worry because after all...God's Got This!
A colleague of my Dad's (they were in the seminary at the same time), sent me a message over Facebook on Sunday and said that he used a piece of my blog in his sermon that day. His message was on the "Confidence of the Resurrected Life." I thought that being in his sermon was incredibly cool. I don't know exactly what he said about me, but I still think it's cool! ;) His message to me came at just the right time because I was getting discouraged. It's a very cool thing how God orchestrates life. He sends just the right pick-me-up at just the right time. I have been praying that God would use me and my situation to help others. So, thank you, God for letting me see a glimpse of that in the form of Pastor Tom's sermon. Thank you, Pastor Tom for being God's instrument (even if you didn't know it!), to encourage me when I needed a boost of confidence. And to everyone else, if you're ever in Kansas City, KS, you should visit Pastor Tom's church: Our Saviour Lutheran.
Other cool things...
Thursday night I decided to watch "Grey's Anatomy". I used to watch it all the time, but haven't recently, so it was a "God-thing" that I tuned in for this specific episode. I say that because one of the story lines in the episode was that of a DBS surgery. Pretty cool. Watching the episode though made me realize that the real DBS surgery is so much more intricate and marvelous and extraordinary then I had initially thought. Those that know me extremely well, know that I love, love, love television (and that's probably an understatement!) and that I'm extremely enthralled and fascinated by anything medical, but I'm telling you, when I watched that episode, I could only think to myself that TV, even with all of its bells and whistles and special effects couldn't even come close to getting the experience (both from the doctor's and patient's perspective) and the awe and amazement of it all, right. And that's a bold statement coming from someone who owns every episode ever made of "ER" and "House" and who loves anything and everything about TV. It's also not lost on me that the only way man and woman can ever have the brains to come up with something as intricate as deep brain stimulation is because God gave them the ability and the smarts to do so.
I'm pretty sure my hair is going to grow in curly again - which I'm super ecstatic about! It's growing every week and it's already got texture and slight curls, so I'm happy. It also stands straight up sometimes. Other times, I feel like I have a 1,000 cow licks. ;)
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| Do you know how extremely hard it is to take a picture of the back of your head? Well if you don't, you do now. It took me picture after picture after picture to get the above and below image. There were many pictures of just the ceiling or the wall or the floor. :) |
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| Still not confident enough to go au natural, in public (outside of just posting it here), but my hair is growing! |
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| Still love the wig. ;) |
I posted a picture of myself to Facebook on Wednesday night after the wind almost knocked me out, to show everyone what the wind did to my wig. I thought, "oh, I'll get a few likes..." I posted the picture without really even thinking about it and then I went to church for an hour. When I got home, I noticed that I had more than 100 "likes" on the picture. I guess it was more popular than I thought it was going to be. But, seriously, wind + wigs do NOT mix and I'm extremely grateful that my wig just stayed on! :) If you were one to "like" the picture, thank you - it made me smile and I loved reading all the comments.
I think that's it for now. I've had some cool experiences in the last week, but I've also had experiences that just made me want to cry. But that's just life and I know I'm not the only one to experience highs and lows. ;)
I am extremely excited to see where God takes me on this journey. My life's story (as is yours) is one that not even the best writers on earth could write. It's only a story God could concoct. I'm very thankful and blessed that He's leading this journey, He's got me in the palm of His hand and I need only to hang on for the ride!
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