Tune-In-Tuesday: May 18, 2021

I'm actually updating this blog on a Tuesday this week - it's a miracle!! :) 

I don't have too much to update on considering I just updated on Friday, but I usually find something to talk about, so who knows how long this post will actually turn out to be.

Walking has not been the best, but not the worst either. I haven't fallen and  I use the cane when walking into/out of places. I had it in my head that my next neurology appointment was June 8. It is not. It's actually in August. Good thing I checked. So...I may play with the settings in my DBS system, I may not. Life has been really busy lately and I haven't wanted to mess with it. ANY type of excitement can throw off my walking.

I had yoga today for the first time in three weeks (with my brother's wedding and then my yoga instructor being on vacation this was the first time we could meet) and it was wonderful. I missed it and am so glad to be back at it. I'll probably be sore tomorrow (but a good sore!). 

Has there ever been something you've wanted to do in life but haven't been able to for whatever reason? I've had two dreams since my teenager years that I still daydream about, but don't know if they'll ever come to fruition. Don't laugh, but I've always wanted to be an actress in a TV show or movie and I've always wanted to ice skate. There I said it. :)

Ever since we moved to Tennessee when I was 13 and I met Kellie Martin ('Life Goes On' and 'ER' fame), I've wanted to be an actress. Kellie was starring in a TV show called 'Christy' that was filmed in Townsend, TN near where I live. Since meeting her and seeing some of the set of where 'Christy' was filmed, I've wanted to be on TV and the movies and have my name up in lights and be recognized in grocery stores - ha!! I took an acting class when I was a teenager and while I absolutely LOVED it, I was way too shy to ever audition for anything. I'm still way too shy. I just want to be one of those actresses that's discovered just walking down the street or something. I don't want to have to actually audition for anything! ;) I also wear my heart on my sleeve. If I'm sad, I cry, if I'm hangry, you're going to know it. If I'm mad, you'll see it. So, maybe acting isn't really for me, but it is something I've always wanted to try.

I've also always wanted to be a figure skater, more specifically, a pairs figure skater. All the jumps, twists, twirls, athleticism (A former boss and I would get into discussions on whether figure skating was actually a sport. I said yes, he said no. It was a friendly little debate we would always have.), artistry...I love it all. Ya'll, I think I've only ever been figure skating once (before dystonia symptoms) and it was a disaster. I couldn't keep myself upright on the ice - haha!! Now, with dystonia, it would probably be just as big of a disaster as it was the first time but magnified by ten. Or maybe not. I've read stories of people with dystonia who can't walk, but can run without issue. Maybe I can't walk right, but maybe I can ice skate?! I'm not sure if I'm brave enough to try it. I mean, I don't want to break my neck!! Maybe I'll just stick to watching it on TV and daydreaming about it.

I don't know why I decided to tell you all of that in this blog. It has nothing to do with dystonia. It has nothing to do with what this blog is all about. They are just silly dreams of mine. I just felt like writing and that's what came out. When I start to write, I never know what I'll end up with. But there you have it, you've gotten a glimpse of what I daydream about from time to time. Anyone else do this?

I hope everyone's having a fantastic week. Always remember...God's Got This!

Tune-In-Tuesday (but on a Friday): May 14, 2021

It seems my "Tune-In-Tuesdays" are not happening so much on Tuesdays anymore. ;) Fun fact: I started writing these posts on Tuesdays because that's the day of the week I had my deep brain stimulation surgery on five years ago, so it was (and is) an easy way to keep up with weeks. :) 

This past Tuesday, I was busy helping take care of my mom after her shoulder replacement surgery.

I've had a good week getting around/walking. I didn't mess with the settings or the electricity in my device as I said I might in my last post. I just gave myself time. While walking is not perfect (will it ever be? I'm not sure.), it was a lot better then last week. Maybe it was focusing on someone else (my mom) that was just enough distraction to get my mind off my own problems. 

One thing I've written about before but have decided to talk about again in this post is walking with a cane - more specifically, how I walk with a cane. When I use my cane, I use it "wrong". I'm supposed to have the cane in the hand opposite of the leg it's supposed to help. In my case, my left leg is the one that gives me problems, so the right way to hold and use my cane is to hold it in my right hand. However, since the first time I ever used a cane and continuing to this day, I hold my cane in my left hand. It turns out, I was helping myself before I even knew I was helping myself. In my reading and speaking with doctors, dystonic movements are oftentimes remedied or lessened by touching the affected area. In my case, by holding the cane in my left hand, I was calming my left hand as well as my left leg. My left leg was (is) calmed because sometimes I'll rub the cane against it while walking. Isn't it absolutely amazing how our bodies work?! Even before I ever knew what I was doing, my body instinctively had me caring for it. That just awes me. 

Yesterday on Facebook, I shared an article (that a friend of mine shared first). By the title of it, I was not expecting it to hit so close to home. The last thing I expected it to mention was dystonia. I've linked it here if you'd like to read it: "Why Matthew's Disability in 'The Chosen' Matters It turns out that the author of the article has cervical dystonia. While not the same dystonia as mine (left-sided hemi-paresis), he has dystonia - like me! It's refreshing to read about others that have the same condition that I do. (And if you're wondering, Matthew's disability portrayed in 'The Chosen' is not dystonia, it's autism.) Reading about other's experiences with dystonia, validates my own struggle with it. Does that make sense? It can get rather "lonely" being the only person I know that has this. I know there are lots of people who have it, I just don't know anyone personally. So, reading other's writings about their experiences helps me to not feel so alone in this journey. Before I get comments on joining support groups or the like, I know I can. ;) I have resources, but sometimes it is just a lonely journey. And I'm OK with that (most of the time!). It's why I blog. :)

Anyway, I think that's enough for this week as I've once again written a book. Thank you for reading and...

Always remember, God's Got This!

Tune-In-Tuesday (But on a Wednesday): May 5, 2021

It's been a couple of weeks since I've updated this blog and even though it's Wednesday (when I normally post on Tuesday), I had some time today to sit down and write an update. It's been a whirlwind two weeks. My youngest brother got married on April 24 and there were a ton of exciting things to go to, prepare for and be involved in. His wedding was magical and spectacular. I was completely humbled and blessed to be a bridesmaid. His bride, Erin, didn't have to include me and yet she did and my heart was filled with joy. I was bound and determined to walk down that aisle with no help (no walker, no cane, no one helping me). I was so determined that I think I got into my head a  little too much and over-analyzed and over-thought walking. While I didn't fall, I was definitely having issues. Because of these issues, the morning of the wedding, there was a modification made to get me down the aisle. I didn't want to ruin the wedding for my brother and sister-in-law, but my brother assures me that he and Erin discussed it and they wanted it the way it played out. So, I took a few steps down the aisle, looked straight at my brother (the groom) and he made his way down the aisle, gave me his arm and escorted me to my place in the line-up of bridesmaids (I was the first one walking in). I was slightly embarrassed that I had to have help, but I tried not to focus on that. I didn't look at a soul in the audience until I was in the line-up, so as not to get even more nervous. It ended up being a special, sweet moment in time with my brother that I will cherish forever. I will be forever grateful to Steven and Erin for helping me "fit in". 

Now while I couldn't walk down the aisle without help, I did "dance" at the reception - haha. I put dance in quotes because I can't dance at all. I hardly moved my feet the whole night, but I was on the dance floor the entire night and moved my body - so much so that the next morning I felt muscles I haven't felt in awhile. I had a blast at the reception. I made my mind up to "dance like no one is watching" and I had so much fun. Also, there were NO slow songs played (except the mother/son dance), so I moved all night long. If I ever get married, I think I'll take a page from Steven and Erin's book and only have fast, fun songs played at the reception. 

Since the wedding, I've been struggling. I may have to fool with my deep brain stimulation settings again. I haven't been steady on my feet at all. I was incredibly blessed to have NOT fallen at all during any of the wedding festivities, but the Monday after, I fell. Maybe I just needed to get it out of my system?! ;)  I've also been having spasms in my leg and foot again. Those are mostly at night (and either wake me up or keep me up), but they've showed up during the day too while I'm trying to walk. I just don't really know what to do. This is the part I don't like - not knowing exactly what to do. It's always an experiment. Should I go up with the electricity? Should I go down with the electricity? Should I leave it alone? Should I go to a different setting? I've also been relying on my cane more and more. I hate that. I feel like I'm letting myself down. I feel like I'm letting my doctors down. I feel as though I'm taking the easy way out using the cane. I know I shouldn't feel that way, but for the time being, I'm letting myself feel that way. I let myself wonder if I'll ever be able to walk without the cane again. If you can't tell, I tend to catastrophize things - like "woe is me". I see things in black and white. I need to calm down and (literally and figuratively) put one foot in front of the other and not worry so much. I know I will walk without the cane again because I've done it before. I didn't want to play around with any of my DBS settings before the wedding so as not to make things worse than they were, but now it may be time to experiment again.

I got a call from my neurologists' office the other day and they were calling people who have had deep brain stimulation surgery and surveying us on the process. It seems (if I heard/remember correctly) a neurosurgeon who specializes in deep brain stimulation surgery is moving here this summer and they wanted to know if there was anything that they could improve on or are doing right in regard to the entire process of DBS surgery. The lady I spoke with mentioned that another patient told her that he was given a video to watch and in the video, the person turns on his device and is immediately able to walk with no issues. Umm, yeah - that doesn't happen (or at least in my case) - so it really shouldn't be displayed like that. I told her two of the things that Dr. T. (my neurologist) and Dr. K. (my neurosurgeon) did right were that they managed my expectations and they only told me what I needed to know when I needed to know it. I was blissfully ignorant on some things and joyfully glad that I was! And yet, five years later, knowing what I know now, I would still do it all over again. It's been that big of a blessing in my life. Even with setbacks and rough walking days (or weeks!), I am so much better today then I was before the surgery.

I saw this post by TobyMac on Facebook and it's exactly what I needed to read: 

I may struggle, but I'm not failing. I may have little pity parties for myself at times but then God always shows up and reminds me how loved I am and that everything's going to be alright.

Thank you for reading this entry. It's taken me awhile to type it because I have fake nails on (from the wedding) and haven't gotten used to typing with them, so if there are any typos, blame it on the nails - haha!

Always remember - God's Got This!!!