Hi everyone! I promised myself I would do better about updating this blog, but yet again, another 3 months have gone by, and I have in fact not updated this blog. This is partly due to the fact that there has really been nothing to update you on (I say this and watch, I'll have what amounts to a 50-page blog post). To be honest, I've not had a good 3 months in regard to walking. I have no clue as to why either. It's been a struggle.
I had my 3-month BOTOX appointment with my neurologist yesterday. Here's how it went. My appointment was at 8am. I told my manager the day before that I would be (probably) be late for work. My famous last words were, "Hopefully, they won't be backed up too much." Ha! While my neurologist was not backed up at all, the registration process was. I arrived at 7:45am. I rarely ever get there 15-20 minutes early like they say to, but yesterday felt different, so I was early. There was only 1 woman checking people in (there are normally 3) and while I went to my neurologist's office - it was the "testing center" (for lack of a better word!) part of the office. This testing center is a part of the hospital system and does everything from mammograms to echos to X-rays, so it's not just for neurological tests. I had to wait a few minutes as I was not first in line, but I got there just in time to be second and avoid the massive amount of people who filed in behind me. I was checked in by 8am, but others who had 8am appointments were not. Dr. T. came from his office area and walked with me to the exam room. I was his first patient of the day, so he had to set the room up and mix the BOTOX injection. Now, I, along with most everyone else in this world know that people get BOTOX for cosmetic purposes (I have to sign a waiver every time I get it that I am getting it for medical purposes and not cosmetic purposes). I also know that people get it to help with migraines. I've been mulling over this as I don't think I would ever get it for cosmetic purposes. It hurts too much! So, I finally asked Dr. T. about it. Like, do they inject it right into people's foreheads and how does that not hurt?!?! Come to find out, they do inject directly into the forehead but with the tiniest of needles. Dr. T. said he would show me the needle and he did. It's SO TINY!! And then he brought out the needle he does my injections with and it's HUGE. Seriously. I'm not exaggerating for sympathy - I promise! I asked why he couldn't use the smaller needle and he said it's because he has to go so deep into my muscle. No wonder it hurts so bad. And now I know why people who get BOTOX for cosmetic purposes have said that it doesn't hurt at all. Same drug, different needles!!!!!! As he mixed the BOTOX, I told Dr. T. that for whatever reason I didn't see results this last time. I've been walking on the outside of my foot. Not on purpose - it's just the way my foot lands on the floor. Once I recognize that I'm walking that way, I correct myself. I asked Dr. T. if BOTOX is an accumulative drug - meaning after several uses does it build up in your system and work better. It's not and it doesn't (hence having to get it every 3 months.). I was hoping that might have been the issue because I was 6 weeks behind getting it this year due to my insurance changing and having to get approval for it. I get BOTOX every 3 months, but when I got my last shot in February, I had not gotten it in 4.5 months. I thought that could have thrown it off. But Dr. T. said that wasn't the case. As he mixed the Botox, he said, "I'm going to give it one more shake since you said it didn't work last time." I said, "Does that work?!". He smiled and said, "In my head it does." Haha!! I guess doctors can be superstitious, just like the rest of us.
I had a question to ask Dr. T. and I knew it was going to be a silly question, but I also knew that I had to hear him say it out loud for me to feel better. So, I asked. I prefaced it with, you're going to laugh at this question. I had a co-worker pass away last month from ALS. I also follow a really cool girl on Instagram who has ALS. In my co-worker's case, she was officially diagnosed in November 2023 and passed away in April 2024. In the case of the girl who I follow on Instagram, it took 4 years for her to get diagnosed. My co-worker was in her 60's but the girl I follow on Instagram is in her early thirties. So, ALS has been on my mind lately. As much as I don't want to admit this, at times, I can be a hypochondriac. There I said it. My guess is that you can guess what my question was. :) So, I asked Dr. T., "Do I have ALS?" And his response was an adamant, "No. You do NOT have ALS." And that's all I needed to hear. It was as simple as that but hearing it from anyone else other than him was not going to satisfy me. I think he knew that too. :) All of that talk lead me to tell him about the first doctor's appointment I had after I started having trouble walking. I went to my internist. I, at first, thought maybe it was something psychiatric, but was assured after seeing my internist, it was something physical. To this, Dr. T. said, "It's most definitely physical. There is nothing psychological about this." One thing that has come from all of this thinking about ALS is that I have now deemed my condition as just plain frustrating. I'm not going to die of it (thank you, Jesus!), but boy do I get frustrated by it! I've said this on several occasions to people: "I was here on time; however, I forget that I can't just run in from the parking lot into your office." I must remember that even if I'm "on-time" for something, that doesn't mean I'm not going to be late because it takes me 10 years to walk in! :) So yes, my condition, my disease is nothing if it's not frustrating.
Dr. T. checked my muscle strength and declared that I was "really strong". He says this every time. ;) I think he sometimes may forget that my muscles are strong! I know I'm strong - haha! It's the signal between my brain and my muscles that isn't strong.
Dr. T. remembered that my family has a crazy birthday/anniversary schedule in June, and we bantered about that while he checked all my deep brain stimulator settings. Everything was good there. On a side note - June 7 will mark one year since I got a rechargeable battery implanted. That means for one whole year I've recharged myself every week. I didn't think I would last that long as the wonder and excitement of it wore off probably by the 2nd week. I have to dedicate an hour or so to being hooked up to an electricity source while charging myself up for the week to come. I'm kind of proud of myself!
Finally, it was time for the injection. It hurt. I'm not going to lie. Just be glad you don't have to have it done. :) It doesn't last long, but long enough! Dr. T. asked, "You good?" And I was after he was done, but I wanted nothing more than to jerk my leg away while he was injecting it. After my leg, he injects the BOTOX into my hamstring and that goes WAY better. I wondered out loud why it does, and he said he doesn't have to go as far into the muscle. So now I know. :)
Dr. T. asked if I'd like to do physical therapy again. I don't really want to do it per se, but I know it helped. I said yes if I could get Courtney again to which Dr. T. said, "Isn't she great?" She is! So, he ordered the PT. I asked if he thinks I should try to work with different settings again in my DBS system. He said it couldn't hurt. We decided I should wait about 2 weeks though (so that the BOTOX can kick in) and then I can play. He also said that he would love it if I checked in with him in about a month and a half to let him know how things were going, so I said I would. I just hope I remember to - ha!
One thing I haven't mentioned on this blog (I don't think) is how Dr. T. thinks that (in hindsight) the toe surgery I had a few years ago ended up being something he regrets telling me I could do because he thinks it messed with my walking. At the time, I had a camel toe which was causing me a lot of pain. Another of my toes has not been straight since I broke it walking on the beach years ago. During the surgery the podiatrist did lots of things (including fixing the camel toe and straightening out my toe - it doesn't bend anymore) and in hindsight I probably "fixed" something while "breaking" something else, so to speak. It's no one's fault. It is what it is. Who knows - my walking may have gotten even worse if I didn't have the surgery (that was all of our thinking at the time). I mention this because Dr. T. brought it up. He thinks that my walking has gotten worse because of it, but I'm not so sure. Sometimes I find myself thinking I'm not brave enough to try again to walk without a walker or cane. I mean, I DO walk without a walker or a cane at home, but otherwise I use one or the other. Maybe if I built my courage up, I could do it again. Maybe I could, maybe I couldn't. Maybe within the next few months I'll try again (especially if PT works!). I asked Dr. T. if he could write me a prescription to go on a beach vacation every three months instead of getting BOTOX. He laughed and said he wished he could!
And now that I have written another small book, I'll close! If you've made it this far, thank you for reading! I'll try to update more (maybe my month and a half check in with Dr. T. or PT will make me update more), but if not, my next BOTOX appointment is in August.
As always...God's Got This!
