In my last entry, I thought maybe I was through using my walker and then the next day came and I lost my nerve and used the walker again. I was frustrated at myself, but I didn't want to fall, so I used it. This is not just a one-way journey. It has lots of backslides, but I'm growing through it all, so that's the positive. Wednesday, Thursday, Friday, Saturday - every day, I used the walker, but then Sunday came. I had the walker and my cane in the back seat of my car as I drove into the parking lot at church. I'm notorious for losing my nerve walking in the church parking lot (even though I park in the closest handicap parking space available!). I didn't know what I would do. Would I push through my fear or would I wait another day to do that? Well, I pushed through my fear. I did use my cane, but I did NOT use my walker. My Sunday school teacher came up beside me and asked if I needed help. I just asked that he walk beside me, you know, just in case! And he did. And I walked in without having to grab ahold of him - yay!! I walked out of church later without fear! Yesterday (Monday), I walked completely walker AND cane free - PRAISE JESUS!!!!!!!!!
Today's a big day because it's been 5 YEARS since my deep brain stimulation surgery. It was February 23, 2016 when that surgery occurred. FIVE YEARS AGO!!!! Some days that feels like just yesterday and other days it feels longer then that - ha! If you'd like to read what I wrote about the DBS surgery, you can do that here: It is Not Brain Surgery!: 2 Down, 1 To Go
To celebrate this momentous occasion, I slept in today and then explored some of the Foothills Parkway in the Smoky Mountains. It was good to just get away from the day-to-day. The weather was perfect - in the 60's and the views reminded me once again of how awesome God is.
 |
| How it was going 5 years ago on the left to how it's going today on the right |
 |
| Feeling wonderfully blessed |
After my drive on the Foothills Parkway, I came home and wrote a thank you letter. Yes, a thank you letter - not a note. A note is something you write a few sentences in, this was a letter. I wrote it to my neurologist, Dr. T. I should have written it five years ago, but better late than never! Since it's the 5 year anniversary of the surgery, I was reminiscing and re-reading through my blog posts and it occurred to me that I never put down in words what exactly Dr. T. meant/means to me. He's not the neurosurgeon, so he didn't do the surgery, but he was with me before, during and after the surgery. Yes, of course he's my doctor and it's his job, but over the course of the past 5 years, he's done so much (and continues to do so much) that I thought it was time to send him a thank you letter. He's informed me, he's advocated for me, he's cheered me on, he's been frustrated with and for me - he deserves a letter! Three pages later, I finished the letter. What's that about me writing a book again? I most certainly have the words for it! I also need to write my mom a thank you letter. Again, after re-reading through my blog posts, she's my hero. I mean she's the one that took me to doctor after doctor (if they were out of state). She's been with me through all the surgeries, all the pain, everything. Dad held down the fort at home and he's seen me through everything too, but Mom was the one sleeping on chairs in hospital rooms, holding my hand through the worst night of my life when I wanted to die (because the pain was so bad). I owe her a hand-written 3 page thank you letter too, but it will have to be another day because I have writer's cramp now (fun fact: that's a form of dystonia too!). I should write Dad a thank you letter too because he's cleaned up more of my puke then anyone else, I think - including the infamous Christmas Eve when I puked all over his and Mom's driveway. He was too tired to clean it up that night (after preaching at three services), so he decided to leave it until the next day. But in the morning, he found it had frozen. There's nothing worse then cleaning up someone else's puke - so thank you, Dad!
I had a check-up with my neurologist, Dr. T. yesterday. And since it's been 5 years and I'm on my third battery, he said that the next time I have to have the battery replaced we should highly consider doing a rechargeable battery. I told him I didn't think I could have a rechargeable battery since I've gone with the non-rechargeable one since the very beginning. He debunked that theory! He said I was too young to be having surgery every two and a half years. I completely, whole-heartily agree! He is at a loss though on why my batteries only seem to last two and half years. I'm not on the highest setting. I'm not doing anything "wrong" - they just seem to deplete faster in me. He said that the rechargeable batteries last 15-20 years. The downside is that I have to recharge it. I asked how often that would need to be done. He said it depended on how much "juice" was being used but some patients have to recharge it every couple of days and others can wait a week or so. I'm not completely sold on the idea of having to recharge it that often, but I have time and I'll do research on it. Who knows, maybe two and half years from now the recharge rate will increase or there will be other options. He also asked about my shoulder pain. I told him it's still there, although since I haven't been able to work-out since my surgery it's barely bothered me. He asked that I get my primary care physician to look at it. Once I told him, I'd already talked to my PC about it and he thought it was muscular, he made me promise to ask for an X-ray, just to be 100% sure everything is OK. He said he could do an X-ray, but he'd still have to send me to someone else if the X-ray showed anything, so I promised, I would have my PC get an X-ray of it.
Dr. T. also showed me how to turn my DBS device off. I'm ashamed to say, I didn't know how to do that. It turns out to be super easy to do. He just reminded me that if I ever do turn it off, to remember to turn it back on! Now I can have EKG's (one thing needed and/or requested before surgeries) and my system won't mess them up anymore.
One thing Dr. T. commented on at my appointment was the fact that I could tell the deep brain stimulation works. How can I tell? Because of how I felt/walked before the battery being replaced via how I feel/walk now. It's like night and day I tell you! He said that he's still frustrated (me too, me too!) that he can't get my foot to relax anymore then it is, but is happy that I'm happy to know that the DBS does work for me. We (Dr. T. and I) are both HUGE perfectionists. And I emphasize the word huge. Yes, we both want more. I am nowhere near "perfectly" walking and I want that. He wants that for me. BUT - at the same time, gosh am I blessed mightily to be the way I am today. Five years ago I was using a walker everywhere I went. I fell all the time. I was miserable. Yesterday, I walked into the neurologist's office (however precarious it was - it was pouring down rain and the wind was gusting) on my own two feet without a walker or a cane. I didn't fall. So, while I want "perfect" walking (and I'll still strive for that), I am blessed beyond measure by deep brain stimulation. Until my dying breath, I will advocate for it.
I have my one month post-op appointment with the neurosurgeon (well, rather his PA) on Thursday (Feb 25). Hopefully after that appointment I can get the all clear to start working out again. I've got my brother's wedding to get in shape for and since I'm the OLDEST in the wedding party (this is what happens when there are 11 years (and two other brothers) that separate us) - and, well, I just want to look and feel and walk my best. :)
Five years has flown by and at the same time dragged on! Here's to the next five years and the five years after that and well, here's to LIFE. It's not easy, but boy is it worth it. Thanks for continuing on this journey with me! God's Got This!
No comments:
Post a Comment