Hi all! Today marks 2 weeks (and 1 day) since my latest battery replacement surgery. Overall, I'm doing well! I've only lost one of the seven steri-strips though - so I have 6 more to go - haha! I haven't lost the walker either. :( That's kind of a bummer, but these things take time, right? Usually by 2 weeks I can tell if the electricity is working in my leg and foot or not. Interestingly enough, the past couple of days my leg and foot have felt weaker then they did even just a few days ago. I have no idea what that's about. Maybe it's psychological? Like - I know I should be walking OK now, but I'm somehow preventing myself from doing that by putting myself in a box of "you SHOULD be walking fine now!!" So, I just need to take a deep breath, let it out slowly and NOT WORRY. It will come when it comes. Even just writing that made me relax!
I'm not allowed to workout until my return to the neurosurgeon in a couple of weeks and it's driving me crazy. I'm not allowed to even do yoga yet. On one hand, I've enjoyed the break (from exercise, not yoga!!) and on the other, I want to workout so bad!!! But, in due time I'll be back.
I've been reminiscing a bit these past few days as I've realized that the 5th anniversary of my deep brain stimulation surgery is coming up starting on February 16 (it was a three week process of surgeries). On a side-note that means I've had three batteries in 5 years! I re-read an entry to my blog that I had written on February 7, 2017 (almost one year to the day after my surgeries) and it was such an encouragement. If you'd like to read what I wrote back then you can do that here: It is Not Brain Surgery!: Shouting From the Rooftop: February 7. God is so good. He was, He is and He will remain good.
My brother and sister-in-law got me an Amazon Firestick for Christmas so I've been enjoying watching Amazon Prime and Netflix. I found a show on Netflix called Lenox Hill. It's a reality show I guess you could say as it follows several doctors/surgeons that work at Lenox Hill hospital in NYC. Several of the doctors that the 8-episode series follows are neurosurgeons. It was fascinating to watch. I know medical shows are not everyone's cup of tea, but I enjoyed it. All I have to say is that I am so, so blessed. I am blessed that I have dystonia and nothing else. Yes, I said I am blessed to have dystonia. Blessed because I don't have brain cancer. That disease is ruthless and devastating and absolutely horrible. I am blessed. This dystonia is a drop in the bucket compared to other diseases and conditions involving the brain. And while I'm on the topic of TV shows, after Lenox Hill, I found another show - Virgin River to binge on. It's a drama and I've fallen in love with it. I only have a few more episodes to go (like 3) before I've watched the whole series so far, but I think (unlike Lenox Hill) it's a drama that is still creating new seasons - or, at least I hope! I don't want it to end.
As for my back/side pain that I mentioned in my last post: It's still there slightly but is much, much, much better!! It's almost gone actually. I can still feel it at certain times, but it's so much better. I didn't do anything to make it go away, it just went away on its own. I also learned that it's probably not my sciatic. I spoke to someone at church who said my pain was in the wrong spot. Anyway, if it gets worse, I'll deal with it then, but for now, it's almost gone which I am most thankful for!
I am once again a card-carrying member of Medtronic (the company who creates the batteries for the deep brain stimulation device.) as I got my updated card in the mail. With each new battery comes a new card with the information for my battery on it. I can show this card when I have to skip going through metal detectors at airports and stores to alert those in authority that I have a medical condition that prevents me from doing that.
I read something the other day that caught my eye. It was an article that said that the battery in the new iPhone 12 could interfere with batteries made for heart pacemakers. While I don't have a heart pacemaker, I do have a "brain pacemaker". Could the battery effect it? Hmm...something to think about (but not worry about because 1) I don't have an iPhone 12 and 2) the article was for heart pacemakers - so no need to worry now - ha!).
I had a captive audience the other day as the children of some very close family friends wanted to see pictures of me bald - haha! Even my nieces wanted to see. So I pulled them out from when I was bald five years ago and they were amazed. I realized that I do love sharing my story. Yes, this is an ongoing condition that I have and it's constantly changing and evolving, but I love getting the word out about it, about deep brain stimulation and just telling my story. It's not always pretty. It doesn't wrap up in a pretty bow. It's messy and complicated and (at times) embarrassing. It's confusing and frustrating and (at times) lonely and self-isolating. BUT, it's my story. It's my life. It's beautiful through all the mess. It's mine.
Thank you for reading and always remember - God's Got This!
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