Hi all! Sorry, I've been MIA on here. There were several times I thought about updating, but then talked myself out of it - ha!
I met with my neurologist today and thought I better update the blog before I forget to. :) Do you ever make more than one doctor's appointment on the same day and then regret it?! I don't know what I was thinking but I had a neurology appointment and a physical today, plus work.
To begin - I got a flat tire on my way home from work last night (Tuesday). In retrospect, it was God's grace. I was on my way home from work and literally within feet of my house when I noticed something was awry. I pulled into my driveway and sure enough - a flat tire. I don't have Triple A but do have roadside assistance through my insurance company, so I contacted them through an app on my phone. They gave me an ETA of someone coming to help but it turns out that the ETA was just that - an ETA. :) About 2 hours later, someone did finally come to help. I didn't necessarily mind since I was technically at home - haha! The guy pulled out my spare tire and it was flat. Sheesh. He had an air compressor though and waited awhile to see if the air would hold in my tire, and thank you, Jesus - it did! Whew! So, he installed my spare. I asked if the spare would at least get me through the next day (today) because I would be too busy to get a new tire that day. He assured me it would. This was NOT how I envisioned my night going, but I did see God's grace written all over it. I could have been on the highway or on my way to work when it happened, but I wasn't. I could have missed work or appointments, but I didn't. See? God's grace. Now, I'll really, really, really listen to my dad and brothers when they tell me (at least a couple of months ago) that I need a new tire!
This morning when I went to my car, the spare tire still had air in it - yay! I saw Dr. T. (my neurologist) at 10am this morning. One of the first things he said was that he saw I had had COVID. Ugh, yes! Yuck. I'm so glad to be over that. I asked if he had gotten it and he said that so far, he's been blessed to not have had it. He asked me if the Botox worked this time, I said it had. Yes, this time I COULD tell that the Botox helped. Oh, it's not perfect by any means, but there were days when my gait was so much better. Yes, I still use the walker in parking lots or wide-open spaces. Yes, I still use the cane, but I could tell, when the Botox was at its peak, it was helping. But I always want more. I always want it to be better. I guess that's just my innate personality. You give me an inch; I want a mile. He asked me to put in percentage how much it helped. I said 70%. Maybe that was too much? Maybe it was too little? I don't know, but that's what I told him. I said that while it helped, I think I could go higher on the units given. He agreed. He also said though that he didn't want to give me too much because he didn't want to make my leg too weak. He said he would try between 45-50 units.
Sidebar here. I was talking last week with my sister-in-law who is a pharmacist. She asked how many units the doctor was giving me at a time. She said that when they give it to patients for bladder or esophageal problems the dosage is usually 100 units. Initially (because I wasn't right in front of my blog when we were talking - haha!) I told her that I thought he had started off with 20 units. That was wrong! He actually started with 30 units. Then in June, he upped it to 40 units.
Back to today. Before he gave me anymore Botox, he checked my deep brain stimulation unit, and everything checked out with it. The battery is still good - yay! Last time I got Botox he asked that I not mess with the settings on my DBS unit so that we (he) could tell what was doing what. So, I didn't mess with it. About two weeks ago I really started having problems. Where once I could just walk with the cane, now I was finding myself having to use the walker. I started falling more and just generally being unstable. I noticed that I was walking on the "outside" of my foot and that my foot wouldn't land securely on the ground. Also, my foot would spasm and jerk (mainly at night). I could tell the Botox was wearing off. I didn't want to mess with the DBS settings though because I knew I would be seeing Dr. T. soon enough.
As Dr. T. prepared the dosage today, we chit-chatted, which I think he knows distracts me enough to relax me enough - ha! We talked about the UT/Florida game. :) He injected the Botox and when he was done, he asked if I was OK. He said, "You barely flinched this time!" Yay, me! It did hurt a little, but not as bad as last time. He asked if I wanted a Band-Aid, and I said yes. I'm kind of glad I did because this time it bled a lot more. He made me feel so much better about myself when he couldn't get the Band-Aid opened without issue. Ah, yes, it happens to the best of us. ;) When I asked him how many units he gave me, he said 45. I said, "You really are conservative, aren't you?!" (I'm just not that patient. I'm either full throttle or nothing at all.) I asked him if there are other muscles he could inject (to help me even more). He said there are, but the muscle he injected it into is the muscle that controls whether my foot turns in or not and that's where he is seeing most of my problem. He asked again that I try not to mess with the DBS settings, unless I absolutely felt like I needed to if the Botox was wearing off. I asked, "So I can't play with it at all?" And he said, "Unless you need something to do, no, try not to." Which actually made me laugh. "Unless I need something to do?" He said, "You know what I mean. If you really, really think it'll help you can do it, but try not to." :) So, I'll try not to mess with the DBS. Maybe 45 units of Botox will do the trick. As I left the room, I said, "And this is when you are going to try to "secretly" watch me walk, aren't you?" (He was going one way; I was following the medical assistant out to the lobby another way, so he would be behind me.) To which he responded, "Yes, but I'll try not to make you nervous." :) So, here's to 45 units of Botox! My next appointment is January 4 of NEXT YEAR (and yes, I do realize we are days away from the start of October - ha - so it's not that far away!).
My next doctor's appointment of the day was a physical. Everything went great there except my sodium levels are STILL low. (Not that I expect you to remember, but last year my sodium was low.) The doctor said that I seem to be tolerating it fine so he's not all that worried about it. It can get TOO low, but it's not, for now, so that's good. I just need to eat more salt (within reason!), which isn't such a bad thing! :)
If you've read this far, thank you! I think I've written enough to last you for the next three months.
Always remember...God's Got This!
