Tune-In-Tuesday: July 27, 2021

I took last week off from blogging because we were celebrating my grandmother who turned 95 on July 21. We had a wonderful time taking her to see the play "Driving Miss Daisy" and celebrating with cake and ice cream. 

As for me, I adjusted the electricity in my deep brain stimulation system. I had been on Frequency A giving myself 3.60 volts of electricity, but felt like I needed more. So, on July 9 I adjusted the electricity and went up to 3.70 volts. I lasted one day shy of two weeks (the length of time it usually takes to see a difference in my walking) on this setting before adjusting it down to 3.50 volts on July 22. But on Sunday (July 25), I went back up to 3.60 volts. It's been crazy. 3.70 volts ended up being too much. 3.50 ended up being too little. Hopefully, 3.60 volts will be the "sweet spot" again. Maybe my body just needed to see what was too much and too little again to realize that 3.60 is the right setting? I really have no idea. It's all just trial and error, but for now, I'm back to 3.60 volts on Frequency A. It's not been perfect, but perfect is boring, right?! :)

At 3.70 volts, the electricity was too high. How did I come to this conclusion? My left hand. I had so many problems with it being too stiff. I couldn't open and close it normally and when I gripped things (i.e. my cane), I gripped them way too hard to the point of my hand aching. It's really hard to describe how I know this was too much electricity, but I just know. Since I had been at 3.60 volts just two weeks prior and it wasn't working for me, I decided to go down to 3.50 volts and yet that proved to be too little electricity. I felt too free - ha! How to describe how I felt at 3.50 volts - well, my leg muscles were just too much like jelly. They were too loose. I felt like I had no control over them. I was getting more spasms. I guess both cases (being too high and too low) can be summed up like this: I had no control. No control over whether I was going to have a muscle spasm or whether my foot would just shake and not be able to give me a steady anchor. 

I try to convey how I feel or what life is like for me, but really (and I don't mean to disrespect anyone by saying this) you can't really know unless you have the same experience. Isn't that true about a lot of life's experiences?

I know stress exacerbates my symptoms as does a lot of other "outside" factors. I know this is true of a lot of other diseases that a lot of other people suffer through, so I know I'm not alone in that department. The older I get, the more I am aware that ALL people struggle with something. I try to give grace because grace has been given to me. I'm trying to give grace to myself as well. It's hard for this type-A girl to not be "perfect". I put a lot of undue stress on myself by letting pride come before the (sometimes literal) fall. My self-esteem plummets at times, but then I just have to remind myself that I have something I can't control and sometimes I just have to use assistance in whatever form that takes place in (cane, walker, a helping hand). Sometimes that assistance also comes in the form of a good cry behind the scenes before I pick myself up, wash my face and carry on. I know I'm not alone in this either! 

I can be having a down day or moment, but then I'm reminded how loved I am by God. I'm reminded that I'm not the only one walking through a storm. I'm reminded that God sends storms in life to test us. He's always with me; He just wants to see if I'm always with Him. I never pray harder or seek Him more then when in the belly of a storm. He wants me (and all of us) to seek Him, to trust Him, have faith in Him and call upon Him in the mountaintop experiences as hard as we do when we feel like we're sinking in the depths of a storm. God is good all the time and all the time God is good.

Always remember...God's Got This!

Tune-In-Tuesday: July 13, 2021

Ya'll, I never know how to start these blog posts. Am I supposed to say "Hi everyone! Thanks for stopping by and reading."? Or am I supposed to just dive right in to the update? Maybe someone who's a better blogger than me can fill me in. ;) 

On Friday of this past week, I finally did it - I adjusted the electricity in my deep brain stimulation system. I went from 3.60 volts on Frequency A to 3.70 volts on Frequency A. And now, I wait. God's still teaching me how to be patient because I'm a slow learner. ;)

On Friday afternoon, my sinuses started to hurt. I immediately thought, "Is someone cutting the grass?" I thought it might be allergies. Then, the pressure moved from my sinuses to my head. My head was throbbing. A little while after that, I thought I had a fever. I broke out in a sweat, just laying on the couch. I got nauseous and really, really wanted to throw-up, but that didn't happen. My head hurt so bad (but just on the left side) that I had flashbacks to the night I spent in the hospital after my deep brain stimulation surgery. Thankfully, it wasn't quite as bad as that night was (if you want to know all about that night, you can read an old post of mine found here: It is Not Brain Surgery!: 2 Down, 1 To Go), but it was enough to send me to bed at 6:30pm. I couldn't do anything but bury my head in the pillows and try not to move or look at anything. Thankfully, I don't get headaches too often, but I have family members that get migraines every once in awhile, so I hope I'm not inheriting those! I am pretty sure this had less to do (actually nothing to do!) with my adjusting the electricity in my DBS system and more to do with clenching my jaw (which I noticed I had been doing and tried to stop!). When I woke up on Saturday, I immediately praised Jesus that I didn't die and then I praised Him that the headache was gone. I've been re-watching the TV show ER (for like the 2 millionth time!). I'll usually watch an episode or two before I go to bed. Well, I obviously didn't watch it the night I got the headache, however, I did watch it on Saturday night and had to laugh. You can't say God's not got a sense of humor and that He doesn't protect us from ourselves. The episode that I watched had a woman come in complaining of some ailment (Ha - I can't even remember what right now!). Later in the episode, after she's back from having a test, she starts complaining of a headache. When the nurse goes to check on her later in the episode, she finds her dead. She'd had a cerebral aneurism. Had I watched that episode the night before - when I had my major headache, I would have been convinced that I had the same thing. See, God was watching out for me!!

On Sunday, I was wary of walking into church. I had just adjusted the electricity and was scared I'd get "stuck" in the middle of the parking lot not being able to walk, so I used my walker. I might have had a bit of the "yips" so to speak. There was also another reason why I used it. I have this sore on the bottom of my left foot that is making it very uncomfortable to walk. It's very weird. It looks like there may be a sore (or maybe dried blood) under a callous. Is that even possible? I'll spare you a picture of it - although it really just looks like a callous, but boy does it hurt. It's the result of the way I walk (or have been walking recently). I hope that with the increase in electricity, I'll walk better and the sore will go away. Only time will tell. I hope I can make it the full 2 weeks on this new level of electricity, but if I have muscle spasms while walking (which hasn't happened yet), I may choose to lower it again. I have to find that "sweet spot" again - the one where I don't have too much or too little electricity. I noticed last night when laying in bed that my foot wasn't curling in, so that's a good sign. Again, only time will tell.

I had two friends that had brain surgery yesterday. TWO - and on the same day!! I'm happy to report that both of their surgeries went well.

My grandmother mentioned to me that someone asked her how I could exercise if I couldn't walk well. I'm not even sure how that topic came up, but I thought I'd answer that question here. :) First, I do exercise. Second, I use a stationary bike. It's perfect for me. I get a really good workout and I don't fall. I watch TV and listen to music at the same time (hey - whatever it takes!) while working out. I actually took this picture a few days ago because I thought the number was cool (I know, I'm weird!): 

And with that, I'll close. Thank you so much for reading!

Always remember - God's Got This!

Tune-In-Tuesday: July 6, 2021

I hate admitting that I have physical limitations. I hate that I can't walk like everyone else. But, every once in awhile having walking issues does have its perks - ha! My mom and I were once again able to go to a concert because I have problems walking. She got us front-row seats to a "sold-out" Eagles cover band concert this past Friday. It was sold-out except for two seats - one of them being for a person with a disability. Now, don't get me wrong. We don't just pull this "disability card" out to gain entrance to concerts or sympathy from anyone, but having to use a walker from time-to-time does allow for fun things to happen every once in awhile. I do find that using a walker is so much more "freeing" at times then trying to do it (walk) on my own (or even with just a cane). Getting around amusement parks, parking lots or wide open spaces is so much easier when using a walker. I sat next to a woman at the Eagles concert who used a cane, but said that she finds a walker much easier to use as well in all the above mentioned places with an emphasis on parking lots. It's not all just in my head - haha! What do I mean by that? I mean, up until I had this conversation with her, I thought that maybe I'm just making parking lots a lot scarier in my head then they actually are, but she confirmed that she also has struggles in parking lots where there's nothing to grab a hold of if need be to keep from falling. And the main goal in both of our lives is to not fall. Neither one of us fell at the concert - praise Jesus!  The concert was amazing and Mom and I had a fantastic time once again making memories together.

I've been grappling with the idea of playing with the settings in my deep brain stimulation system again. I just haven't been walking like I want to. I rarely walk anywhere (outside of my house) without a cane like I did before my latest battery replacement surgery in January. I see my neurologist again at the beginning of August, so does that give me enough time to change the settings and see if things improve? I don't know why this particular area always gives me pause. I should just go full-force into committing to "fool around" with the settings, but I don't. Five years into having a deep brain stimulation system and I'm far less eager to "play" with the settings then I was right after getting it implanted. But things just aren't "right" yet. (Have they really ever been?! I mean...I always want better then I have!)

I had yoga yesterday and I was trying to do this move ("bouncing" my feet up and down) and I couldn't do it. At first, neither foot was doing it, but eventually the right foot got its act together and did the move. My left foot, however, wouldn't bounce. No matter how hard I tried. No matter how much brain power I put into it - it didn't move. No matter how much I tried to do it "automatically" (without putting any brain power in it), it wouldn't move. I don't know if that has anything to do with the electricity or not, but it frustrated me. I want to move freely! And then I feel guilty for complaining or getting frustrated because there are people out there in much worse shape then I am and then I stop and just thank Jesus for everything I do have - and I have so very, very much!!

So there you have it - a quick little update. I hope everyone had a wonderful 4th of July weekend and that everyone will have a wonderful rest of the week.

Always remember - God's Got This!