Oh, I so hoped that I wouldn’t just wait until my next Botox appointment to update this blog, but that’s exactly what has happened and I’m so sorry! Life got exceedingly busy and this blog was neglected. But, I’m showing it some love now, so all is good.
My last Botox injection of 45 units was done on September 28, 2022. By October 22, I could tell I’d been given too much. I’d fallen a few times and I had no control over my foot. It was “floppy” and weak. Dr. T. had warned me that this could happen if I had too much Botox. He also warned me that there was really nothing that could be done, and I’d just have to wait for it to wear off. Ugh! I hate waiting. 😉 I decided that I would try to counteract the effects of the Botox by upping the electricity in my deep brain stimulator, so, I went from 3.50 volts to 3.70 volts. But I’m not a doctor as you well know and that didn’t help at all, so I ended up going back down to 3.50 volts.
Life got warp speed fast in November when my temp position at work became my permanent position (praise Jesus!!) and my mom’s health started to rapidly decline. Soon, I wasn’t thinking about my walking at all and just managed the best I could. I used my walker more and didn’t care that I had to use it.
Because I became a “new” (that’s in quotes because I’ve actually worked for the company for 15 years. I was laid off in December 2020, spent 8 months on “vacation” and came back to the company in a different role in August 2021. I was a temp from then until November 2022.) employee in November, I was added to their insurance then, but EVERYONE in the company would be switching to a brand-new insurance come January 2023. I called Dr. T’s office in the middle of December to explain the insurance situation. They tried calling what would be my new insurance company come January 2023 to get pre-approval, but since the new insurance company didn’t know who I was yet, they didn’t succeed in that. We (Dr. T’s office and myself) decided to keep my January 4 appointment and pray that Dr. T’s office would be able to get pre-approval in a day so that I could get the injection, but just in case that didn’t happen, we scheduled another appointment for January 25.
On December 21,2022 I “moved in” with my Mom and Dad to help with my Mom and on December 30, 2022, my mom passed away. It was shocking. We knew she had metastatic cancer, but it was still a shock that she died when she did. We thought we had a few more months if not years.
On January 3, I was expecting a call from Dr. T’s office to see if I still had an appointment with him the next day. Around 4pm I finally called them and asked. They had not gotten insurance approval yet, so my January 4 appointment was cancelled. I was happy with that as I was still in shock over my mom’s death, and we were busy making the funeral arrangements and I just didn’t feel like going to a doctor’s appointment.
Last week I got a call from Erica at Dr. T’s office saying that she was still trying to get the Botox approved. Fast forward to January 17 and she called me to say that insurance FINALLY approved it - yay!!! On a side note, that very night, I got a letter in the mail from the insurance company saying they had declined my request. It was dated around the time that the first request was declined.
Since I was technically already really behind in getting the injection, Erica asked if I would like to come in the next day and I, of course, said yes.
Word to the wise: don’t schedule a Botox injection at the beginning of the year or you will pay your full deductible right off the bat! 😂😂 But now I have all year of “free” doctor’s appointments!
When I saw Dr. T. he asked how the Botox had worked. I told him I thought 45 units was too much and explained to him what happened. He asked if I had fallen and how many times. I told him I had fallen but couldn't remember the exact number of times I had done so. It was more than once though that's for sure. I told him about raising the electricity in my DBS system but then taking it back down. He was OK with that. He said it was strictly the Botox’s fault for making my foot floppy and loose. Then he asked what I wanted to do. I could decline the Botox injection altogether; or he could give me a lower dose. I opted for the lower dose. Since 40 units seemed to work really well before (I had said that my walking was 70% better), we landed on that. So, that’s what I got: 40 units.
I asked Dr. T. how his holidays were, and he asked me the same, so I told him about Mom. He said he had lost his father-in-law and an uncle about two years ago in succession around the holidays, so he knew how hard it was to go through something like that. Then to distract me from the needle, we talked about concerts and football. I’m hopeful that this injection will work, but I’m also realistic and know my walking won’t be perfect.
As I write this, it’s dawned on me that my mom has been with me every step (literally!) of the way through this dystonia journey and now she’s not. Of course, my dad and brothers have been there too, but Mom was the one to go to every doctor’s appointment with me (if they were out of town/state) and she’s the one that’s been with me in the hospital for each surgery. It’ll be different going forward. But for now, I’ll close this update as I always do because it’s the one thing that never changes:
Always remember...God’s Got This!!
Thank you for the update, Stephanie. God knows when His children are ready to be "on their own". You most definitely proved during your beloved mother's final weeks that God has given you the Strength, Wisdom, Maturity, of a Grown Woman. We all need our mothers, no matter our age, but at some point, we are finally Grown Adults, and then God knows He can call our Beloved Mothers back to Himself, and that we will be OK. I think you will do just fine handling your own medical care, you are on top of everything to do with your condition, actually you have become an expert in the field, from what I have read in your blog. Other people with your condition ought to consult with you.
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