I'm finally posting a Tune-In-Tuesday blog post on a Tuesday - wonders never cease! I thought it was time for another update, especially since I changed the amount of electricity in my deep brain stimulation device. It's not that I've been falling all over the place (I haven't), but rather I'm not walking "correctly". I walk on the outside of my foot and my foot isn't laying flat on the floor - all signs I need to give myself more electricity. This is tricky though. Since I haven't been falling and I CAN make it from Point A to Point B (however slow or awkward it may look to others), do I really want to mess with the electricity? Especially since the holidays are coming up? Well, I guess my answer was (is) yes. On Saturday, (November 21) I upped the electricity from 3.60 volts on Frequency A to 3.70 volts on Frequency A. My left hand went a little nuts, but that was to be expected and it's calmed down a little since Saturday. So now, I wait.
I find it a little ironic. It takes about 2 weeks to see any real effects from going up or down on electricity. I really never thought twice about that, but then 2020 happened. COVID quarantine is 2 weeks. That got me thinking. Does it take 2 weeks for a lot of medical-related things to take place, to heal, to work, for medication to kick in....? Probably not. I'm just thinking out loud now. :) Like I said, it's just a little ironic to me.
I went to the dentist last week. They have been wanting to do a digital panoramic X-ray on me for about four years now (I haven't had one since before my DBS surgery), but won't do it until I ask Dr. T. (my neurologist) if it's OK. Because of the battery for DBS and then of course the actual electricity, they want to be super diligent in making sure it's 100% OK to get it done. They've done other X-rays but not the panoramic. But, for four years, twice a year they have asked me this and for four years, I keep forgetting to ask my neurologist! That's super embarrassing to admit. The dentist has always been the one doctor, I don't actually mind going to. ;) So, finally TODAY was the day, I remembered to call and ask. That was partly due to the fact that I just had my dentist appointment and partly due to the fact that I got a letter in the mail from my neurologist letting me know the practice was moving to a new location - so I had the letter right on the table in front of me to remind me. (Side note: I'm SO THANKFUL that the letter was just to inform me of a new (but still local) location and not that my doctor was leaving the practice or moving out of town!) I called and left a message and Dr. T.'s nurse called me back within an hour and half. Dr. T said it's fine to have it done, just no MRI's. So I called my dentist and they were able to get me in today to do it! It did make me feel so much better to hear them say that this X-ray is only needed every 5 years (so they were being pro-active in asking me for 4 years if I could have it done - ha!), so I was well within that time period. I'm not sure why it took me four years to ask the neurologist, but now we know! I think it took me longer to get to the dentist and back home, then it did to take the actual X-ray, but it's done and I can mark another thing off of my "To-Do" list.
I've noticed that my left knee makes cracking noises when I extend it. It's been doing this for awhile, but just recently I've wondered if it has anything to do with DBS, electricity and/or how I walk. For whatever reason (it's literally just the way I instinctively walk when I'm having major issues), I don't bend my knee when I feel like I'm going to fall or when I get nervous walking. It's automatic. I don't have to think about it - my knee just won't bend. I guess it's a coping mechanism? My knee doesn't hurt when I hear it crack, but it definitely makes a horrible cracking noise. I hear it a lot while doing yoga or going up stairs. Just hearing it crack makes me wince. It's not painful, but that noise is horrible!! Weird, right?! I guess it could just be old age too! ;)
I'm definitely no medical professional, but in my head and in my heart, I want things to connect so badly. Like because of this, so and so happens and because of this, that's happening. I get SO frustrated when I can't logically connect things. And maybe this is why they call medicine "art" just as much as they call it "science". And maybe this is why I'm not a doctor (well, that and the fact that I'm horrible at math and science). I don't think I could handle on a daily basis why "A" and "B" don't automatically equal "C". I've always thought of myself more "artsy" than "analytical", however the older I get, the more I realize, I do like a lot of "analytical"! I like checking things off of lists. I like researching, but I like answers - clear, concise, black and white answers. I like when every piece of the puzzle fits together perfectly. And that's just not life - is it?! :) I like order, and stability and all things Type-A, but again, life isn't that! If you never fall, you're never going to experience the high of getting back up, dusting yourself off and overcoming. All this to say, I knew where I was electricity-wise, was not where I was supposed to be. I knew I needed more. So that's where I'm at. Hopefully, I can wait it out for the next two weeks (not jump the gun and either go higher or lower) and if I need more electricity after that, I'll adjust again.
This whole experience/disease is an art form, whether I like it or not. Maybe I need more electricity at times. Maybe I need less electricity at other times. It's a dance, right? I've got to give in (not give up) and just let this "adventure" take me where it's going to take me. I think my resisting at times makes it worse. If I have a bad day/week/month, I have a bad day/week/month. That shouldn't define anything. It just is what it is. It'll make the good day/week/month that much sweeter!
Some of you may know that Michael J. Fox is my favorite actor. I've loved him since his "Family Ties" days. One of my most favorite movies is "Doc Hollywood" (You thought I was going to say "Back to the Future", didn't you?!). He became even more of a favorite of mine after his Parkinson's diagnosis and after I read his book "Lucky Man". We have some things in common. We were both diagnosed (in my case - FINALLY) when we were 29 years old. We've both had deep brain stimulation surgery. We both take (some of) the same medication. We both have a neurological condition. Though, I do not have Parkinson's (praise Jesus!), I do relate to some of the things he's gone (going) through. It's refreshing to hear that others struggle. Is that mean of me to say? I mean, I KNOW others struggle, but to actually hear them talk about their struggles encourages me in ways you don't understand unless you experience them yourself. To hear that it's not "automatic" for him to walk or to get going - I understand that on a deep level. It also encourages me because it gently reminds me that I've got it made in comparison. Yes, I struggle every day, but nowhere near the struggle people with Parkinson's deal with. I see it with those in the waiting room of my neurologist. There are people struggling so much more than I am. It gives me new perspective. It makes me count my blessings even more.
We are only a couple of days away from Thanksgiving and 2020 has been a hard year on ALL of us. But God is good. "Rejoice always, pray continually, give thanks in ALL circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18 NIV
And always remember...
God's Got This!
