Tune-In-Tuesday: October 29, 2019

Gosh, I love what the above says. I KNOW God has good plans for me, but sometimes I just get lost in the weeds. On hard days, I just have to cling to the hope and the promise that He works ALL THINGS together for His good. So, I put my trust in Him.

The past week had its struggles, boy did it have its struggles, but on the walking front, I'm happy to report that I'm slowly (emphasis on SLOWLY) walking a little better. Now, if you see me, it might not look like I'm doing better, but believe me, I can feel it. Of course, not every second of every day is good, but I'm hopeful (please, God, let it be!) that I'm entering a good walking period. I didn't adjust the amount of electricity or the frequency that I'm on.

I had someone tell me again last week that I should write a book. I've seriously thought about it and even prayed about it, so who knows. Every time I pray about it, I ask God to give me a sign. But maybe ya'll are the signs? Maybe every person who's said I should write a book is a sign? I don't want to get a big head about it though. I do love encouraging people through words on a page (or, I guess in this case, a blog), but I struggle. I wrestle with what to put in these posts and what to keep close to my heart. I am kind of laughing to myself as I write this, because I took a video on October 20 to show people what happens when I turn the electricity in my brain up or down and I'm STILL wrestling with whether to post it! I tried posting it on the blog, but even though I trimmed it down, it's still too big of a file to upload here. So, if I post it, you'll have to see it on Facebook. Maybe I watch too much TV (OK, that's not even a maybe, that's a flat-out yes, I watch too much TV!), but I keep thinking if I share certain things will people use that against me somehow? When is sharing, oversharing? But I've been pretty open about my DBS surgeries and the struggle, so I do feel like I kind of owe it to people to say what's going on. There are definitely areas I keep private, but with DBS, I feel like I should encourage others - hence the blog. Actually, that's not true. Haha. The real reason I started the blog was that I got worn out telling my story over and over again. ;) Not that I don't like talking about it (I mean, I write mini books here on this blog every week!), but in my core I'm an introvert and it's much, much, MUCH easier for me to spill my guts in a blog post than face-to-face sometimes. Also, with a blog (or a book), people can read at their own pace, people can ignore it and I'm not bugging people with it. If you want to read and follow along - fantastic! If not, you're not hurting my feelings. There are of course other areas of my life that I don't share anything about. I try to keep this blog mainly about deep brain stimulation and dystonia, but I've delved into other areas at times too.

I saw this on someone's Facebook today and it is so what I'm going through right now:

What do I mean by "going through"? I mean - even when walking is good - there are other areas of my life that aren't as "perfect" (or at least up to par) as I'd like them to be. Truth be told, I've been going through a rough spot. The devil seems to be on me all the time, watching and waiting for one slight misstep on my part, to drill into me that I'm not worthy. I'm not pretty enough, I'm not skinny enough, I'm not good enough and on and on and on. I know it's all lies, but sometimes I feel as if God is silent when I pray that things will get better or happen differently. BUT, the above reminder by C.S. Lewis reminded that every day I must give myself over to God and rely on Him. Even when I think He's silent He has a purpose for everything.

Sheesh - I had no idea that this post was going to turn out the way it did tonight. I literally just sat at my computer and started typing. I hope something I've said helps someone who reads this. I do know that in everything, God's Got This and that is what I cling to!

Tune-In-Tuesday: October 22, 2019

The past week was once again, tough. (Broken record?!) Walking is just hard. Walking without falling is harder. I didn't fall, but it's just been a hard week. I'll leave it at that. I had yoga on Friday night and pretty much made up my mind that I was going to experiment with the electricity again. My foot wouldn’t bend at all. There must be a happy medium somewhere, right? I don’t want my foot so “tight” that it won’t bend at all, but I don’t want it so “loose” that I don’t have any control over it.

Saturday, I experimented. I went to the lowest setting on Frequency A and then to the highest. The highest was way too high and the lowest was way too low, but I settled on 3.00 volts on Frequency A. I'm still determining if that was the best decision - ha! It was a leap from what I had been on: 3.60 volts. However, during the experimenting, when I landed back on 3.60 it was still way too much, so that's how I ended up at 3.00. Only time will tell. God's trying to teach me patience again and I'm still a slow learner in that department. ;) I didn't experiment with any other frequency although I have at least two (maybe three) others that I could switch to. I'll leave those for another day.

But for all the complaining and frustrations, I must remember from where I came. I'm not using a walker anymore. All I wanted from the deep brain stimulation surgery was to be able to use a cane to get around with and I don't even use that (although maybe I should at times). I've exceeded my initial goal. My goal keeps moving though (doesn't everybody's? If you reach one goal, you set a new one...) and I know that's where my frustration stems from. As one of my former neurologists used to tell me every single time I saw him, "Rome wasn't built in a day, Stephanie."

My dad had these lines in his sermon Sunday "Praying most often does not get us what we want, but what God wants. And what He wants for us is always good. We should persevere in praying because God's timing is also involved as well. God's timing is always right. Don't quit (praying). He hears, He acts."

God's still in control. He's still good.
God's Got This!

Tune-In-Tuesday: October 15, 2019

I kind of feel like I’m sounding like a broken record, but here I am again saying walking was a struggle last week and continues to be in to this week. However, I did not fall. Yay! I felt like falling a million times, but I did not fall. Praise Jesus! My walking has not really been good though. I’ve felt like adjusting the electricity in my deep brain stimulation device many times, but I have refrained. Maybe the playing with it is what’s made walking more difficult? Maybe it’s the change in weather? Maybe it’s this or maybe it’s that. All I know is that I drive myself crazy trying to pinpoint it when really all I need to do is leave it in God’s hands and He’ll take care of it. It’s SO MUCH EASIER to say that then to actually live it out. But this is why God is God and I am not. 😉

If the week had to be summed up in one word it would be: stairs. So many stairs. I don’t have issues going up stairs (for the most part), but I do have issues going down them and this week I’ve been tested with stairs.

I went to a concert (Thomas Rhett – a country singer) with my Mom this past Thursday. We had seats one row from the very top of the arena where he performed. Climbing up was pretty good, but what goes up must come down and going down wore me out! But, you’ve got to take the bad with the good and the good definitely outweighed the bad in that scenario. We started with seats one row from the top of the arena and ended with FLOOR seats 30 rows from the stage. I wish I had counted how many stairs I had to descend to get to those floor seats, but in the end it didn’t matter because I made it and had FLOOR SEATS!!!!!!!!!!! I was, however, a sweaty mess – ha!

This past week the elevator at work has been having maintenance work done on it. There are two elevators in the building, but (from where I park) to get to the other elevator involves more walking than I’ve desired to do, so I’ve been braving the stairs. I usually always take the stairs up but usually always take the elevator down. Thankfully, I’m only on the second floor, so it’s not that big of deal.

I’ve been in kind of a funk yesterday and today. I don’t like being in that kind of mood, but that’s where I’ve been. Again, I could drive myself crazy trying to figure out why I’m feeling like this, but I’d rather just trust Jesus that the funk will go away. I do tend to get melancholy when I can’t walk. But as the saying goes, “this too shall pass.” It’s at these times that I try NOT to focus on myself but on others and their wants and needs. I don’t always succeed at this, but when I do it definitely pulls me out of whatever funk I’m in.

I saw this quote somewhere and it struck me as TRUTH:

Sometimes, when I really, really don’t want to read the Bible and I just want to sink down into the lies Satan is targeting me with - if I read the Bible anyway, I get such gems. God never disappoints. Here’s just a couple of examples:

“As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy." James 5:11

“When I said, “My foot is slipping,” your unfailing love, Lord, supported me.” Psalms 94:18

Just typing those verses has put me in a better mood already! With that, I'll end this post. Always remember: God's Got This!

Tune-In-Tuesday: October 8, 2019

I turned the electricity in my deep brain stimulation device down last week on Tuesday and promptly fell walking into work on Thursday. Sheesh. A guy came up behind me and asked if I was OK and if I needed help. This time, I surprised myself and said yes (to both!). He literally pulled me up off the ground and got me standing again. While I get super embarrassed when I fall and usually don't want any help, this time I was so very thankful for his help. I have no idea what the purpose in me falling is, but I choose to believe it’s in God’s plan for me. So, I (or in this case a co-worker 😉) pick myself up, wipe the blood from my knee and stand firm in the knowledge that God loves me more than anyone or anything and there is a greater purpose for my pain.

As I made it to my desk after falling, God let me in on a little secret: He gave me my specific body as is because He knew (with His help) that I could handle it. He knew that I could take care of it, that I could deal with the issues that it causes and He knew that I was the perfect person to handle every aspect of it. Have you ever thought like that before? It completely opened my eyes. I was no longer ashamed of it. God made me. My body is His gift to me. So I should treasure it, take care of it and know that with His help, I can handle whatever happens to it, BECAUSE HE SAID I CAN. (I hope this makes sense and doesn't just sound weird -ha! It truly was an eye-opening experience for me. I love when God lets us in on stuff like this! It changed my entire perspective.)

Interestingly enough, on Wednesday, I felt like my walking was improving. However, I did had a massive headache. It wasn't from the deep brain stimulation! I don’t normally get headaches (which I’m very thankful for), but this one at points made me feel nauseous. I thought back to the night of my deep brain stimulation surgery. Hands down, that was probably the most pain I’ve ever been in. While thinking of that, it made me appreciate that my headache was NOTHING like that pain – haha. It was just a normal headache that everyone gets occasionally and to which I stubbornly didn’t take any medicine for, so really, I can’t complain about it. 😉 At Wednesday night church Mom noticed my knee. It was all bruised (but not bloodied – because this was BEFORE my fall on Thursday). It was bruised from my fall the week before. I guess that I’ve gotten so used to what it looks like that I don’t even give it a second thought. The good news about falling this time around was that the nerve pain I mentioned in last week’s post, is completely gone. Maybe it’s just that the pain from skinning my knee is worse?! Whatever the case, the nerve pain isn’t there anymore.

On Saturday, I walked OK. I think that was partially due to wearing tennis shoes and only going places where I could errands while holding onto a shopping cart when needed. But I made it to a couple of yard sales too, so I wasn't holding on to carts all day.

Sunday, I had help in to church. I was carrying a ton of stuff. I thought I could carry it all in one box, but it turned out the box was too heavy, so I divvied it up into bags. I was bringing in peanut butter for “Peanut Butter Sunday” and candy for “Trunk or Treat”. I specifically prayed that there would be someone to help me and without a shadow of doubt, I knew there would be. I didn’t know who, but I knew God would provide and He did! Susan – thank you SO, SO much for your help. You were an answer to prayer.

Certainly, since turning down the electricity in my deep brain stimulation device, I’ve noticed differences. It’s very, very hard to explain, unless you’ve been through it, so (at least in this post), I’m not going to try and explain it, except to say that I didn’t feel like I had control over some of my muscles, so this morning I made the decision to return to the setting I was on before I turned the electricity down last week. So, I’m back to being on Frequency A at 3.60 volts. It’s the lesser of two evils (so to speak). While neither is “perfect”, I know I’ve had positive results on this level and maybe being on the other level for a week, “reset” the system? Probably not, but I’m grasping at straws here. So, I’ll try this level again.

Oh sure, I’m frustrated, but in the end, I know I was built for this. I know that God is in control. I know He has a bigger purpose for me than I can even imagine and most importantly, I know that GOD’S GOT THIS!

Tune-In-Tuesday: October 1, 2019

I am not going to lie; the past week was a little rough. I fell again. This time it was on Wednesday in the hallway at church. Thankfully, only one person saw me, and he didn’t see me fall (I don’t think), he came after. He asked if I was OK and I was. I didn’t bleed, so I consider that a win.😊 It wasn’t until I went up for Communion later that night and I kneeled down that I realized, I must of bruised something. Can you bruise a nerve? As weird as that sounds, that’s what it feels like. It’s not pain but it’s like a nerve got damaged or bruised or aggravated. I also have a nice bruise on my arm where I caught the wall on the way down.

This morning - on a whim - I decided to turn the electricity in my deep brain stimulation device down. My rational on that is this: I haven’t been walking well for a few weeks now. I tend to walk without bending my knee because I feel more supported that way. That’s not good, but I feel if my knee bends, my foot will spasm. I’m also walking on the outer edge of my foot. Basically, my foot isn’t laying flat when I walk. My left hand has also been giving me problems, by curling/cramping up – all signs that I might have too much electricity. I also thought that maybe a “jolt” (AKA just doing something different with the electricity) in my system would help. So, down I went. I kept myself on the same frequency – A but went down one “point”: from 3.60 volts to 3.50 volts. I also decided today to take the batteries out of my DBS remote. I keep the remote in my purse, but inevitably it inadvertently gets turned on and off being crammed in there and every time I go to use the remote, the batteries are dead. So, I’m keeping the batteries in my purse, but will only put them in when I need to use the remote. Maybe one day, I won’t carry the remote with me, but it still gives me comfort that if I need to change the amount of electricity I give myself ASAP, I can do it (if the batteries aren't dead!). I prayed this morning that God would lead me to what He wants me to write about tonight in this post. But then I quickly made an addendum and asked that it NOT include me falling – haha. Sometimes, being very specific with God is good.

God’s been showing up for me big time this past week in the form of people to help me along the way. Grant it, I can walk, and with God’s grace, I will make it to wherever I need to go, however, I won’t decline help unless I absolutely do not need it (and let me tell you, this past week I needed it). Sunday, a friend helped me into church. Last night I had help getting in to and out of a funeral at church. If you are the people that I’m talking about (past and present!), please know that I appreciate you so much!! It’s hard to not be as independent as I would like and sometimes, I get overwhelmingly frustrated, but then I have to turn the way I see the situation around and be thankful for the “extra” time spent with friends/family who come to help out. Thank you to all of you who have and continue to help!

One of my work besties, Sarah, put a smile on my face this week by donating money to Down with Dystonia. It's a charitable organization that does research on dystonia. Our company donates on behalf of us to different charitable organizations that we choose. She donated on behalf of me. I have the SWEETEST friends. Thank you, Sarah.

This is the verse of the day that popped up today in my Bible app:

I thought it so appropriate. I even prayed that I would have compassion, kindness and patience with my body. I’m all too often talking very harsh to myself. I am my own worst critic and find every flaw. But, God’s given me this body as a gift. He specifically gave it to ME. Therefore, He trusts me with it. He knows that with him, I can handle it. He wants me to be kind to it, to nourish it, to love it, flaws and all. Sometimes, that is very, very hard for me to do, but I continually try to work on it. I have many rough patches, but there again, I’m still a work in progress. We all are – as long as we are alive on this earth – we are works-in-progress.

Always remember, God’s Got This!