Tune-In-Tuesday: January 14, 2020

To be honest, I wasn't going to blog tonight. I've been in a funk and I just didn't feel like writing, but after putting it off for a few hours, I decided to go ahead and write anyway. :)

It's been a pretty uneventful week walking-wise and that's a good thing. It doesn't mean I haven't had issues (those are a daily occurrence for the most part) it just means I haven't fallen and things are pretty status quo.

Something happened today that I did find kind of funny. I was walking to my cube at work loaded down with my laptop, purse, lunch bag...and a lady passes me in the hallway and stops. She exclaims, "Oh my gosh! Do you need help?!" I smile and tell her no. She's a new employee and she was so sweet to stop and ask, but up until that point, I thought I had been walking pretty good! I guess it's all perspective, right?

Yesterday morning, I awoke to a nose-bleed. I used to never get nose-bleeds and now I seem to get them all of the time (OK, that might be a slight exaggeration!). Later in the day, I was at my desk at work and got another one. What gives?!

Anyway, I think that's it for this week. Always remember, God's Got This!

Tune-In-Tuesday: January 7, 2020

Happy New Year! It's hard to believe we're already 7 days into year 2020. I still have Christmas decorations up, although at the moment my house is in complete disarray because I'm in the process of taking them down. I usually leave Christmas up until Epiphany (which is January 6).

I had a great week last week - still celebrating Christmas and New Year's Day. It's been fun taking some time away from work to celebrate with friends and family. Routine is also good and I'm thankful for it as well. I haven't had any major issues with my walking, but there are moments. They're just that though - moments. I try not to let them define me. That's easier said than done for me, but at least I'm trying.

I went to a store the other day where there were no carts to hold on to until I got into the store. I could (and most of the time do) focus on the fact that it took me forever to get in to the store and forever to get back out to my car and that I probably inconvenienced people as they had to stop (in their cars) to wait until I crossed, however, tonight I'm taking a different approach: I walked in to and out of that store on my own two feet and didn't fall. I made it! I will confess that once i got to my car, I sat there a few minutes watching people walk all over the parking lot with the greatest of ease and I got a little jealous. But, God had me realize how far I've come and that having a little difficulty walking is by no means the worst thing ever. I was reminded TWICE today by two different people of how far I've come. I must have needed to hear that today! :)

I'm a member of a dystonia group on Facebook and the other day they posted an article about how those with dystonia may experience sleep disruptions. I didn't actually read the article, but that headline must have been rolling around in my brain because last night was pretty much sleepless. I don't think it really had anything to do with dystonia, but I was tired last night so I went to bed at 9:30/10 pm. I woke up at 1 am and couldn't fall back asleep for anything. I read my Bible. I thought surely three chapters of Leviticus (NOT Lamentations, which I think I told my dad I was reading. You know, they both start with "L" and are in the Old Testament - ha!) would put me to sleep. It did not. Finally at 2am I got up and started putting away Christmas decorations. I worked up until the time I had to get ready for work. I should be EXHAUSTED by now! I did have a right-after-lunch slump, but I got up from my desk at work and walked around for a few minutes and then was fine. I still have miles to go before all my Christmas decorations are put away, but hopefully tonight I will sleep!

Also with dystonia, repetitive motions trigger spasms. That's why a lot of musicians deal with dystonia and why "writer's cramp" is a dystonia. Putting decorations away, I'm experiencing some repetitive motions which cause my hands to cramp or my legs to feel like jelly. This could also just be a sign that I'm getting old. ;)

I have to say though, that I am still extremely blessed - even when walking is hard. I am able to live a rather normal life. Yeah, I have some issues, but in the scheme of themes, I can do (almost) anything I put my mind to. God has blessed me in SO MANY ways. I have the most awesome job that does not require me to be on my feet or walking all day. I have a home that I love (and that, even though purchased before any of my problems began, also happens to be on one level - God provides!). I have a family and friends who love me for me. And, I have God who protects me always. I'm blessed!

I go back to my neurologist on January 30 for a 6 month check-up.

I hope all of you have a wonderful week to this brand new year and always remember - God's Got This!

Tune-In-Tuesday: December 31, 2019

How is it the very last day of 2019?! Time, slow down!! :) Not only will we begin a new decade tomorrow, but in year 2020, I'll be entering a new decade of life. I'm so thankful that I was born in a year that's easy to calculate because I'm not that great at math - ha! But I still have until June to relish the very last few months in the decade I'm in.

I forgot to mention in my last post that it's been 20 years - 20 YEARS (OH MY GOODNESS) as of December 19 that Mom and I were in a horrible car accident that could have ended very, very badly. But the Lord had other plans for us. Thank you, Jesus for sparing our lives. That's not to say we both haven't experienced side effects from that accident, but the past 20 years have been beautiful nonetheless. There's some question that maybe that accident triggered something in my brain and that's where the dystonia came from. However we'll never really know and what happened, happened. No use crying over spilled milk, right? (Although in the case of the accident, it was spilled pizza, as we had just picked up a pizza for Sunday lunch.)

It'll be 4 years in February as to when I had deep brain stimulation. Again, how can it be 4 years since surgery?! And in 2020 we celebrate leap year, which is the day that I had the deep brain stimulator activated. Wow. Hard to believe. Sometimes the days seem long, but the years - they are definitely short!

This past week was good. I didn't have too many problems walking. Of course there were times when walking was more difficult, but overall, I am SO THANKFUL for a great week. Christmas was fabulous with all my family. I'm blessed to be an aunt and seeing Christmas through kid's eyes is absolutely the best. I went to all three Christmas Eve services at church and saw family at each. Of course Dad was there for all of it, but at the 4pm service I saw my brother Stanton and his family. He had to work the ER that night at 7pm, so they came to the 4pm. Between the 4pm and the 7pm, I earned my keep and vacuumed the sanctuary. There was lots of wax from the candles (each service had candlelight). I didn't do it alone though as another member, Paul did most of it. He had the huge industrial vacuum and I had the regular sized one. I found that the regular sized one fit perfectly on the pews, so not only did I vacuum between the pews, but on the pews too - haha! Someone left me some Cheerios under the pew, in case I got hungry. :) After vacuuming, I picked up my grandmother and we went to the 7pm service together and then my mom and other two brothers came to the 11pm service. Between the 7 and 11 services, I went to my parent's house where my mom had made tons of goodies. I was refueled for the 11pm service.

For Christmas, I got tickets to see Fiddler on the Roof at the Tennessee Theater. My mom and dad went with me. We parked not too far away and I held on to my dad to walk in. Even with his help, I felt like I was going to fall. So that wasn't the best, but I still made it without falling and the show was fabulous!! I love theater and music and dancing and just getting lost in a story. It was a fantastic gift and I'm so very thankful for it!!

Year 2019 definitely had its difficulties, but year 2019 also had beautiful moments in time that I'll never forget. Yes, I'm not fully healed, but maybe that's God's plan. I don't stop praying for complete healing and no problems walking, but at the same time, I try to focus on the moment I'm in and all the spectacular things God has done for me and given to me despite my problems with walking.

I saw several friends post this on Facebook. It's so true!! Thank you, Jesus for making me a fighter.

And, thank ALL of you reading this for your love and for following along on this journey with me. God's not done with me yet! May every one of you have a most blessed New Year and always remember, "God's Got This!".

Tune-In-Tuesday (but on a Monday!): December 23, 2019

I know it’s Monday and I usually do blog updates on Tuesday, but tomorrow is Christmas Eve, so I thought I’d update a day early. I still probably won’t get many readers (and that's OK!) as this is a very busy season, but for those of you reading - thank you! This will be a short post as there is not much to update on. The past week has been much better then weeks before. I’ve had issues at times, but overall walking has been easier. Thank you, Jesus! It’s allowed me to go shopping for Christmas presents and get things done.

I did fall last night. It was silly though. I was at home and got startled by something, lost my balance and fell. But I didn’t hurt myself and there was no one around to see me fall. 😉 All is good!

I’m sitting here tonight writing this blog with the glow of the Christmas tree and my Christmas village to look at. All the Christmas gifts are wrapped, and the house is clean.
I can’t help but smile and thank the Lord for all my blessings.

May each and every one of you reading this, along with all your family and friends have the most amazing and blessed Christmas. And may you always remember that God’s Got This!

Tune-In-Tuesday: December 17, 2019

Walking was rough this past week, really rough. I may have accidentally contributed to it being rough as I was very impatient and adjusted the electricity in my deep brain stimulation system a couple of times. Since the week before last was rough as well, I decided to increase the electricity. On Wednesday, I increased it from 3.00 volts to 3.20 volts, but by Saturday I felt I was worse off then before. The thought came to me that maybe I didn’t need more electricity but less. I’ve mentioned this before, but when I get excited, walking gets harder. By “excited” I mean any type of excitement. It can be good excitement (holidays…) or bad excitement (anxiety…). In this case, it’s good. I’m excited about Christmas!! However, it does a number on me. It’s fascinating to me how the body works (or even malfunctions). I try to stay even keel, but if you really know me, you know that I’m not “wired” like that. – haha. 😊 So, like I said, by Saturday I decided to turn the electricity down to 2.90 volts. After a few days at that level, I began to think it wasn’t enough as I was having problems just getting my leg to move or my foot to take a step. My foot started dragging a little as well. It may have looked like I was stiff, but I was trying not to have my foot or leg spasm. UGH. So, this morning I went back to 3.00 volts – where I started from. It has been a good level before so I’m praying it’ll be a good level again. While walking is difficult, I am very, very thankful that I haven’t fallen. I’m also thankful to have a job where I watch TV all day – haha!!! 😉 I’m not a nurse or a teacher or a retail worker where I’m on my feet all day. See, even in the “little” things, God works everything out!

You may be wondering (or you may not be, which is totally fine too – just skip this part! 😉) why I went back and forth on the electricity the past week when I’m constantly harping on the fact that it takes two weeks to really see any results in my walking. The two- week time frame is 100% true, however, in the almost 4 years that I’ve had the deep brain stimulator, I’m able to gauge whether I think what I did (with the electricity) will actually end up working. And then (if I’m being completely honest!) there are the times when I’m just impatient and don’t feel like waiting two weeks. While my foot/leg may not see any immediate signs, my hand is a good indicator. The deep brain stimulator effects everything on my left side from my brain down so if my hand “curls” I’ve given myself too much electricity. If I can’t keep a grip, I need more electricity.

My main concentration when writing on this blog has been to update readers on my walking. But there are other things the dystonia affects that I rarely talk (blog) about. From time to time I also struggle with my hand, eye, shoulder and even my jaw. I’ll feel my left eye get droopy. My left shoulder aches at times and sometimes I clench my jaw so much that I cause myself headaches. And this is only on the left side of my body. My right-side functions perfectly normal. I’ve debated on writing about this because as much of an open book as I can be about stuff, there are times my introvert self comes out in full force and I get nervous about sharing. So anyway, I’m being a little more vulnerable tonight. 😉

Today (after adjusting the electricity) has not been magical. I didn’t just get up and leap for joy. In fact, I’ve felt like I went down in the amount of electricity I gave myself instead of up. Go figure! Oh well. This is only a season. It will get better. I must be patient and wait - two of the things I struggle with the most! Is this a coincidence? I highly doubt it!

Despite the walking difficulties, I’m enjoying these days leading up to Christmas as I hope you are too. We’re all struggling with something because we’re human, but always remember, God’s Got This!

Tune-In-Tuesday: December 10, 2019

Unfortunately, I struggled with walking last week. I guess it was "time" as I had been experiencing some great weeks, but it still (literally) stops me in my tracks, when all the sudden, I start having major difficulty. I say it wasn't a very good week with walking, but I do have to say I didn't fall. Oops. Scratch that. As I was typing that sentence, I remembered I did fall once (in front of my mom!) at my parent's house on Sunday, but I'm blaming that on a rug - ha! I'm not really classifying that as a fall either, since I didn't hurt myself at all and I caught myself with the wall. I was more concerned about damaging any Christmas decorations then I was about anything else and thankfully none were!

So, it's been a rough week walking, but I'm still counting my blessings for I know many of my friends are going through things much worse than me having difficulty walking. I have to share what happened last night. I really, really needed to go Christmas shopping because the weekends seem to get away from me and it's getting closer to Christmas. I am ALL about shopping online but I needed to go to a physical store just to see what was out there and get ideas. So anyway, last night was my opportunity. Of course my opportunity comes on a really hard walking day. So I prayed. I prayed that there would be a cart next to a parking space that I could grab a hold of. It's not always a given that there will be a cart next to a parking spot at the particular store that I went to. I told a co-worker that I would take it as a sign I was supposed to shop if there was a cart because if there wasn't one, I would just drive home. I wasn't even going to try to walk in without one. I pull into the store's parking lot and there wasn't just one cart, but two and both at a handicap spot! Why am I SO SURPRISED?! God answered my prayer. He does this time and time again and yet I still get so surprised and so over-joyed every time. It's a small thing to most, but it's a huge thing to me. I was having a hard time on Sunday as well. There was a friend waiting to help me. That's another blessing from God. I have SO MUCH to be thankful for that even with a not-so-great week of walking, I can't help but thank the Lord for all the blessings He bestows upon me.

The above picture was actually on a desk calendar I have at work and it was so appropriate for this update that I had to share!

I hope everyone is having a blessed Christmas season. Always remember, God's Got This!

Tune-In-Tuesday: December 3, 2019

Last week was another good week - praise Jesus! My "good" weeks may not look like much to someone else my age or really to anyone else but I'm thankful for them and for only having minimal problems. I've been noticing some of the sweetest things lately from my nieces. They walk with me out of church holding my hand. They'll even say, "Daddy, I'm walking Aunt Stephanie to her car." Or if we have communion at church, they'll hold my hand as we walk up to receive it and back to our seats. They'll ask to walk me to my car when we are at my parent's house and even if I don't need help, I will always say YES to walking with them. How did I get so blessed to have the sweetest little nieces ever?!

I had time off from work this past week to celebrate Thanksgiving, as I hope you did too. It was a wonderful time at my parents. All of my brothers and sisters-in-law and nieces and my grandmother were there. We ate yummy food and just enjoyed being together. Black Friday and the Saturday after were spent holed up in my house decorating for Christmas. My love of decorating for Christmas comes from my mom. I do all my decorating by myself and it really gives me a sense of accomplishment when it's all said and done. However, I'm feeling my age. I used muscles I didn't know I had. I don't know why I do this to myself but I store all my Christmas decorations in big bins that I can barely lift. Maybe it makes me feel stronger?! Haha - no! It only makes me pray harder that I can lift it and not fall. I only have to lift it once or twice (to stack it on another bin) because thankfully the bin is on rollers, but still that one or two times has me praying hard. All of my muscles are still hurting and it's Tuesday! But, I do have all my decorations up, save for the star that goes on the top of my tree and I'm saving that for one of my brothers or my Dad to help me with. I tried putting it on myself and almost brought down the whole Christmas tree with it, so I'd rather have help then have a floor full of broken ornaments. I got a half an inch taller tree last year (7.5 feet vs. 7 foot) and realized that the star doesn't fit because there's not enough ceiling space. My dad rigged it up last year, so I hope he or my brothers can rig it up again this year. I just don't know what else to buy. It's a one size fits all kind of thing, right?!

I haven't had any falls, even with decorating my house, so I'm very thankful for that. I'm just all-around thankful for all the good things in life that God has blessed me with. I hope all of you have had a very thankful Thanksgiving season and that you will have a very blessed and holy Christmas season.

Thanks for reading and always remember, God's Got This!