It's been three months since my last update. It's been a busy summer and while there were several times I thought about updating, I ended up being too lazy or too busy to do so.
In my last post I said that I was going to start physical therapy again and that I was going to "play" with the settings again in my deep brain stimulation device. Only one of those things happened. I did not start physical therapy. They never called to set it up and I got so busy with a project at work, that I didn't follow up with it. I know both of those are lame excuses, but they are what they are. I did play with the settings in my DBS device though, and it turned out to be disastrous. I haven't walked well in a while. Even though the neurologist said only to go up a little bit at a time, I went from 3.5 volts to 3.8 volts on May 27. I couldn't even last the full two weeks he likes me to stay on a setting (before determining if it's too much, too little or just enough) and brought it back down to 3.6 volts on June 4. I waited until July 1 and determined that I needed more electricity, so I went up to 3.7 volts then. By July 13, I went down to 3.6 volts. And on August 1, I gave up completely and conceded that maybe 3.5 volts was where I was actually supposed to be. So, I "played" all summer, and it got me right back to where I started from - ugh!
It's very hard for me to explain how I feel when I try to walk and how I feel when I think I have too much or too little electricity. Sometimes it feels like my leg and/or foot won't support me. Sometimes it feels like if I were to bend my knee that my leg would spasm. Sometimes I feel completely off-balance. Sometimes my leg just spasms and/or jerks. Sometimes my foot turns in. Sometimes my foot just gives out. It's frustrating to no end.
I'm not going to lie, today I've been bummed. I've wanted to burst out crying all day, but thankfully have not (at least not when out in public). I had my return visit with my neurologist for more Botox. Only today was different. Dr. T. said that he didn't think the Botox was working and I couldn't seem to give him a straight answer about it either. I couldn't say confidently that I felt it working, nor could I confidently say that it wasn't. He has always said that he doesn't want to give me Botox just for the sake of giving me Botox. He asked if I had fallen in the 3 months since he had last seen me. I said I couldn't remember specifically, but I probably did. I told him walking has been a great struggle recently. Even walking with the walker has been hard. He is worried that the Botox is doing more harm than good: that it's making my leg too weak (after all, Botox paralyzes the muscles it's injected in to). The only way to tell whether Botox is helping or hurting me is to stop getting it. So, he made the decision (and I eventually got on board with it) not to give me Botox today. Where I was once sad to even start getting Botox injections, today I was sad I didn't get them - how messed up is that?! So, we're pivoting. The new plan is to start physical therapy and I'm going to get an ankle brace in the hopes that it will give me stability. He's also put me back onto the rotation to see him in the neurology department as opposed to just being on the clinical side of things getting the Botox injections. That's one thing I have "missed" per se with just getting Botox injections. Though he does check my DBS settings, my visits are more about getting the injection and then leaving. There is no real office appointment where he really watches me walk (although I highly dislike anyone watching me walk, especially the neurologist - haha) or we can discuss things in more detail. I do have to wait until January 2025 to get in to see Dr. T.'s PA. And then Dr. T. will see me in April. The physical therapy office called me this afternoon and my first appointment is scheduled for August 23. I'm going back to the same place I went to last year. If you're wondering why I've been bummed all day and wanting to cry, well that makes two of us. I have no idea either. It's not like I got horrible news. All I can come up with is that it once again reminds me that though my condition is not fatal, it is frustrating!! Don't get me wrong, I am very, very blessed that it is not fatal, but sometimes the frustrating part of it gets to me and I get sad. Even after all these years I think I can "will" myself to walk normally and then realize I can't. I had somewhat of a pity-party for myself today (internally that is; externally, I hope I portrayed myself as happy!). But even though I was sad and felt like crying there were things that did make me happy today: someone at work complimented me on my dress saying it was so bright and cheerful. I watched a video at work that literally had me laughing so hard I was crying (and that doesn't happen all that often - although yes, I do watch videos for work). A co-worker gave me sweet and encouraging words. I went to pick up my prescriptions that the neurologist had just renewed and the girl in the pharmacy couldn't pronounce one of the drugs and it made me laugh because I had the same exact issue earlier that morning trying to pronounce it for Dr. T. I went to church tonight (even though I really didn't feel like it) and it uplifted me.
So that's where I'm at right now - somewhere between disappointment and hopefulness. I know without a shadow of a doubt though that God is still doing amazing things with my life. Maybe, in this time, He is humbling me. Or maybe He's making me more patient. He knows I need help with both of those areas. :)
But in all things...God's Got This!
