An Update

I know, I know, I know. For those of you that read last week’s post, I hinted at not updating this blog weekly anymore unless something significant happened. I heard from several of you that you enjoyed reading the blog – thank you! I WAS NOT going to write this week, but God had other plans I guess. I found the above quote online and it made me laugh, so I thought I'd share it.

This past week, I’ve been dealing with lots and lots of problems walking. It’s been worse than usual, but NOTHING regarding the amount of brain stimulation (electricity) I’m giving myself or the frequency I’m on - none of it has changed! I laugh at the fact that in last week’s post, I said things were stable, because since writing that I have NOT been stable on my feet at all.

It hasn’t just been walking that I’ve struggled with. My shoulder has been giving me problems. I think this is about exercise – haha. But seriously, I do. I had been doing push-ups. Modified push-ups, but push-ups nonetheless. So, I curtailed those last week. At one point, my ever-vivid imagination thought, “Could I be having a heart attack?”. My collar bone, shoulder, arm and jaw ached. But again, I think it had to do with exercise, plus the DBS device (which is located there) and stress. I didn’t die, so that’s good! 😉 Nothing aches anymore. I did start the push-ups back up this week, but I am only doing three. I know, that’s pitiful, but it’s something!

I had yoga on Friday night and for that hour to an hour and a half I felt strong, when I hadn’t felt strong all week. I went right back to having issues after it, but it was a huge respite.

I fell on Sunday. I didn’t injure myself. In fact, I was walking with a friend when it happened. Oh well. Such is life. I told my friend that it was kind of freeing to fall and know that I can survive. 😉 I mean, I didn’t injure myself and all you can do is just get right back up and carry on, right? I wasn’t even that embarrassed. And in the scheme of things, embarrassment only lasts a moment. Sometimes I need to be reminded that falling isn’t that bad. If that’s the worse that happens, then I’m doing alright.

I must give a little shout-out to my friend Whitney (the one whom I was walking with on Sunday). The past two Sunday’s she’s been my answer to prayer – my specific answer to prayer. This past Sunday, I was sitting in my car in the parking lot at church. I was so far away from the entrance at church that I sat in my car debating on whether to wait a few minutes to see if someone exited from one of the closer spots. As I waited, I saw through my rear-view mirror that Whitney was walking up to my car. I mean seriously, can I have better friends? I think not. Instead of pretending not to see me or just going on her merry way, she came and walked with me. Thank you, Whitney. I see God in you.

Yesterday, walking was no better. I struggled. But God answered prayers. I’ll divulge that I prayed that no one would walk out of work while I did. I know that is such a super weird prayer, but sometimes it’s more of an effort to walk when someone is there then it is by myself. Anyway, from the time I left the building to the time I got to my car (which was a little longer than the normal person would take to get to their car because I was super, super slow), no one walked out of or in to the building. This was super surprising on one hand, because I left right on time, so usually there’s a few people! But, on the other hand it shouldn’t be surprising at all because God did it.

Today as I was QC’ing episodes at work, I was reminded once again, how blessed I am. When I bought my house 14 years ago, I had not yet started to have problems (that would come just a few short months later), BUT, I bought a house with NO stairs. How’s that for God looking out for you? I love my little home and thank the Lord for it.

I was all over the map in this post. I hope you enjoyed reading it. It’s my life. Sometimes I have a hard time articulating what I’m really feeling, but hopefully you got a sense of what it’s like when walking doesn’t come so naturally.

I do know that I am extremely blessed by God. So, I have some problems walking. Some people don’t have legs to stand on. So, with each step I take I’ll remember how blessed I am and that truly, God’s Got This!

Tune-In-Tuesday: March 19, 2019

Hi everyone! Thanks for stopping by and reading this post. There's not much to report from the past week, except to say that it wasn't the best walking, nor the worst walking I've ever had - so I'm somewhere in the middle. ;)

I've had answered prayers in the form of friends showing up at just the right moment to help me when I've felt like falling and God's answered every prayer I've prayed.

I've been thinking about cutting back on these blog posts. I'm three years out of deep brain stimulation surgery and pretty "stable" in how things are progressing (or not progressing sometimes!). So, instead of weekly posts, I'm thinking I'll update when I really have something to update every one on. Readership has diminished and how can I blame you when there's nothing really for me to update you on?!

I'll let you in on a little secret - sometimes I really stress on what I'm going to write about in this space every week. On weeks when everything is "stable", what do I have to write about?!

Thank you again for reading these posts and for praying and for just being my friend.

Who knows, I may write a post next week, but if not, you'll know there was no new news to report (which can be a VERY good thing sometimes!). ;)

Always remember - God's Got This!

Tune-In-Tuesday: March 12, 2019

First – an addendum to last week’s post. I realized after I posted that what I wrote about not falling was wrong! I DID fall. It wasn’t the “normal” fall though (is there such a thing?!). I fell while standing, not walking – ha. I was talking with someone at church and I lost my balance and fell. It was the weirdest, funniest fall – just straight down (on the carpet) – WHILE STANDING!!!!!!! Only me. 😉

I’m not going to lie; this past week has been ROUGH. No falling (and yes, that’s the truth this time!), but major issues getting around. I think a great deal of it is weather related. But whatever it is, it needs to go away. I want to walk!! It is what it is, and this too shall pass, but I want it to pass quickly.

I have struggled exceedingly these past few days with walking. There were some really great things that happened this past week, but walking was not one of them. Sunday, I woke up with this fear that I wouldn’t be able to walk into church without some kind of assistance. How ironic is that? I was going to church and I was full of fear. But God – as He ALWAYS does – came through. I prayed and He answered. If you don’t believe that God sends people to you as an answer to prayer, you should! Ask me and I can tell you time after time after time when someone has shown up at just the right time. God hears and God answers. I had to be brave, put aside my pride, be humble and ask for help, but help came – thank you Jesus! Not only did I get help walking in, but I got to catch up with a man that I thought about earlier in the week. I hadn’t seen him in a while on Wednesday nights and God had put him on my mind. I found out that his hours at work were shifted and he was having to work nights which made it impossible for him to come on Wednesday nights. We go to different services on Sunday morning which is why I hadn’t seen him in a while. Again, God knows what He’s doing, and His timing is always perfect!

Yesterday at work, a friend helped me in. I could have done it myself, but not without a labor- intensive walk and it would have taken me forever. She asked, and I accepted the help. It makes me laugh when I think about getting into or out of work. Some days I look at that trek (which is NOT really a trek at all. I am already so close to the door) and wonder how I’ll ever get from my car to the front door without falling and then other days I don’t look at it as a trek at all. It’s so close! It all depends on the day.

Today, walking was a tiny bit better – not much – but still a little better than yesterday. I take what I can get. I know easier walking days will return at some point. I must be patient. Have I mentioned how impatient a person I am? Being patient is SO HARD.

I saw this on Facebook and it is SO ME. And James 1:2-4 needs to be my life verse(s).

I found this quote and it spoke profoundly to me. I hope it helps someone as much as it did me:

And then there's this. I also found it quite helpful in the way I think of myself:

Yes, this past week has been really tough, but with God's help (and the help of angels He sent in the form of friends), I made it. Even with (and maybe even because of) struggles, I can say boldly, God's Got This!

Tune-In-Tuesday: March 5, 2019

I have lost count how many times this past week that I have lost my balance and/or tripped, yet, despite this, I haven't fallen - praise the Lord! It's been a whirlwind of a week but I have been conscience of the fact that God has sustained me no matter what. We all have our battles to fight in life. They are what give us character and teach us how to persevere and overcome. When I am weak, He is strong.

Someone posted this on Facebook the other day and it struck a chord with me. God is always in control (even when I want to be!):

I also read this at the perfect time:

God knows my need. God knows your need. He hears when we call out to Him. I am so very thankful for His patience with me. I am consciously trying to hear what God is whispering to me. For I know His plans for me are beyond my wildest dreams. He has me. He has you. After all - God's Got This!

Tune-in-Tuesday: February 26, 2019

I forgot to mention in my last post that my mom has started taking yoga. I like to think it's because I inspired her to do it, but that's probably not why. ;) She had a free pass and I had the day off of work on President's Day, so I went with her. It was fun. It was my first class experience (opposed to my one-on-one sessions) and I was able to keep up and not fall over! Then the very next day I had my one-on-one session with my yoga instructor. It was a great week for yoga!

The week in general was a mixed bag of good walking days and then not-so-good walking days. It just is what it is and I have to learn (or keep learning) to deal with it as it comes.

This post will be short as I don't really have any updates or "breaking news" to share. I hope everyone is having a great week.

Always remember, God's Got This!

Tune-In-Tuesday: February 19, 2019 - 3 YEARS (almost!)

On February 23, it will be 3 years since I had awake brain surgery (deep brain stimulation) for dystonia - 3 YEARS?! How is that even possible?! For those that are new here, I thought I'd include the link to the post I wrote (with one hand!) about it:  February 23, 2016

As for the present, there's really no new updates. I had a pretty good week last week. Oh, I had my issues, but nothing near as bad as a couple of weeks ago, for which I am ever thankful for. I do tend to find that the less I focus on myself and the more I focus on others, the less issues I have walking. Funny how that works, right?!

And in ALL things, remember...God's Got This!!

Tune-In-Tuesday: February 12, 2019

I remember when I was a child finding out what my blood type is. I saw it written on a form my mom had to fill out for something. I couldn’t help but exclaim, “Hey Mom, I got an A+ on my blood!”. She laughed and corrected me saying that my blood type is A positive. It’s one of the only things in life that I’ve gotten an A+ on. That and I’m a type A personality, if that counts – ha! 😊

In last week’s blog post, I was debating on whether to try a new frequency in my DBS system or wait it out another week on Frequency A. Well, right before bed Tuesday night, I decided to try another frequency. Guess what?! I didn’t even have to dig out the manual to figure out how to do it – I remembered it on my own! I changed it to Frequency D. When I switched it over, I noticed that the voltage was at 3.30. Since I was on 3.10 volts on Frequency A, I decided to dial it back to 3.10 on Frequency D.

Then I went to bed. I’ve found from past experiences it’s better for me to adjust the electricity at night and give it time to start working while I sleep. 😉 I don’t know if this is a scientifically proven method of doing things, but hey – it works for me! When I woke up on Wednesday, I wasn’t walking as great as I had hoped, and my arm and hand were having issues (I couldn’t grip well and kept dropping things.). I then switched it to 3.20 volts and then back up to 3.30, but by the time I was ready to leave for work, I felt like I needed to turn it back down to 3.10, so I did. Then I left for work. I almost fell when I got in to work but decided to give the level a try. However, after lunch, I decided to go back to 3.30. I was having issues – major issues – getting around.

I left it on Frequency D at 3.30 volts until Friday morning. By the time Friday rolled around, I had had enough. I couldn’t wait any longer. Wednesday and Thursday were really tough days. My walking on those two days reminded me of my worst days. I tried to give it more time to work, but weighing the options, I decided to act and not be miserable any more. At first, I just dialed the voltage back from 3.30 to 3.10, but within a few minutes of doing that, I decided to go ahead and switch frequencies entirely. I went back to Frequency A (which notoriously has been my go-to frequency), but instead of going back to 3.10 volts as I was on before, I decided to go up to 3.20 volts.

Now, not only do I have A+ blood, and am a type A personality, but now I have Frequency A electricity in my brain. 😉

It’s an amazing, weird, kind-of-freaky feeling changing frequencies and volts. I can feel it. It’s hard to describe, but it’s almost like a release of a muscle. Or, if I turn the voltage up, it’s like a contraction of a muscle. It’s so hard to explain. I know I don’t give it justice. It’s quite the experience, to say the least.

I still marvel at it. A man-made device distributes electricity to just the right area of my brain to make me walk. Amazing.

Just as an FYI, the different frequencies I'm referring to are different areas of the brain that are being stimulated. There are between 10 and 20 different places that were stimulated in my brain at the point of the awake surgery. They were stimulated, but are not "on" unless my neurologist turns them on via remote control. The frequencies act differently according to which area of my brain they are in. Frequency A is "on" all the time. I'm not exactly sure which part of my brain it's stimulating - I would need to ask Dr. T. that question, but whatever part it is, it seems to work the best. Frequency D, while it's "on" all the time as well, vacillates between Frequency A and Frequency B so it mixes the two frequencies. Again - the whole process, all the frequencies and electricity stimulation - it all leaves me in awe.

Since Friday, walking has gotten substantially easier. I’m still having problems, but not as many as I had on Frequency D. Now, I need to retrain my brain not to get anxious when walking in front of people. I thought I had gotten past that part, but maybe it was just taking a hiatus, because it’s back in full swing now. I clam up when I know people are watching me. But this too shall pass, right?!

I have to say the one and probably the only thing I love about having issues walking is it brings me so much closer to God. I’m in constant contact with him. I plead with him not to let me fall. I thank him when I don’t fall. If I do fall, I thank him I’m not hurt worse than I am. Sometimes it’s a formal prayer with a “Dear Lord" and "Amen” and other times it’s “Help!”. God never fails. I don’t know why He’s allowed me to have these issues with walking, but I know His plan is perfect.

Always remember, "God's Got This!"