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!!!

Tune-In-Tuesday: April 20, 2021

 I did something today that I haven't done, well, maybe, ever! Maybe I've done it once before, but I really think this was my first time. I got a pedicure. Yeah, no big deal to most. I don't like people touching my feet. It's not that I have a foot fetish or anything; it's that with dystonia, my foot (and leg) jerk a lot and I just don't (normally) feel comfortable enough with myself to get a pedicure. But I did today.  I think the lady giving me the pedicure only told me to be still once - so - WINNING!!!

How is this for ironic? On Friday I was applying some scar cream to my leg and foot. I was in the bathroom and had my left leg up on the toilet and somehow lost my balance and ended up scraping my back on the bathroom countertop. So, not only did I have to apply the scar cream to my existing scars but I created a brand new scar to apply the cream to. Please tell me I'm not the only one who does stuff like this!! 

I think that's it for this update. Not a ton to report on, but just enough to make a short post. I hope everyone is doing well and that everyone will have a wonderful rest of the week. 

Always remember - God's Got This!

Tune In Tuesday: April 13, 2021

I was about to start this entry with..."There's nothing new to report." But then decided against that because while there's no new earth-shattering news to report, there's always something to write about! Or is that just me? I love to write, so maybe that's just me, but either way here's a little update.

I haven't fallen in the last week, so that's good news! Today I had to go to Wal-Mart for something and as I was leaving it struck me...while holding on to a cart I walk pretty normal (unless it's a really bad day), so people may wonder why I park in handicap parking. I then thought to myself, "but take the cart from me and you'll see..." and like it was scripted in a movie that very scenario happened. I parked the cart and while taking the two steps to my car, I stumbled. I didn't fall, but I almost burst out laughing. That's what I get for thinking about falling.

I got the newest publication of the magazine "Brain & Life" today in the mail. Does that make me a geek, because I love the magazine? I find any neurological condition (now that I'm living with one) fascinating, so I love the magazine. And, it's free, so that's even better! Anyway, there was an article in it about a man living with cervical dystonia. It was enlightening to read his story and how he deals with his condition. As he said in the story, we're all different though so what works for him may not work for the next person. And to prove his point, he said that he gets Botox injections that help him tremendously. Botox didn't even touch me (so to speak). I tried it. I tried getting it in different muscles. I tried different variations of Botox. None of it worked. In fact, I actually have an antibody towards one variation (I think it's type A, but I'd have to look that up to confirm.), so that means no Botox for me to reduce lines and wrinkles in my face later in life - ha! (They're always coming up with something new, so, I'm sure I could have something if I wanted it, so no worries there!). I'm very thankful I don't have cervical dystonia. I'm sure this man would say the same when it came to having my version of dystonia (left-sided hemiparesis dystonia - meaning mine is on the left side of my body effecting my hand and leg/foot).

One way I "battle" (not sure if that's the right word to get my point across, but it'll do) dystonia is yoga. I do it one-on-one with an instructor. It's not pretty - ha! She modifies a lot of things for me, but I feel stronger both physically and mentally after I do  it. I like to be pushed. OK, maybe "like" is not the right word, but I love the feeling that comes after I've done something hard (for me!). It's that endorphin rush. Last week, I came home from yoga and my muscles ached (in a good way). I just had yoga again today and I know my muscles will ache (in a good way!) again because my instructor pushed me. I also love working out on my stationary bike at home. Exercise is a good weapon to fight dystonia. It won't ever cure it, but it makes me feel better and gets me moving. 

And now that I've written a lot for someone who was going to start with, "There's nothing new to report.", I think you're as caught up as you could possibly be with what's going on with me. Hey, that rhymed. ;)

I hope everyone has a wonderful week and always remember, God's Got This!  

Tune-In-Tuesday: April 6, 2021

 It's April! How did that happen so fast (and yet at times seem so slow)?!! I hope all of you had a blessed Easter weekend - I know I did! Easter is my favorite holiday. We celebrated Maundy Thursday. Then came Good Friday (where my dad resorted to old school methods when it came to the "loud noise" we hear representing the closing of the tomb. Unfortunately, technology has not been our friend when it comes to creating this in the past few years. I won't reveal how he created it "old school" but I have heard that those watching online could see, so some may know. But for those that don't know, you have to keep some secrets - haha!!).  On Saturday we had our Easter Fest at church. It was a little different this year due to COVID, but it was still wonderful. Everything was done outside. I had the pleasure of driving the lawnmower train and I had a blast. It's the perfect job for me because I sit the whole time - ha! I mean, of course I can walk and do other jobs, but this one just suites me the best. I drove it for three hours and by the time I got off, it was a little hard to walk, but so worth it!! 

Easter Sunday was magnificent. In my opinion, it's the best day of the year. Jesus rose from the dead! He won!! Easter service at my church was wonderful. Last Easter, we had to watch from home, but this Easter, we were live in-person (and also online for those who still needed to stay home)! It made my heart so happy to be in church celebrating Jesus. After church, my family gathered at my parent's house to eat and celebrate. We also celebrated (early) my niece, Hope's birthday. It was so much fun. My youngest brother and his soon-to-be-wife came in from out of state to celebrate too. The weather turned out to be perfect (in the mid 70's) and the day was lovely. However, I did fall. I wasn't even walking! It takes real talent to do that - ha! I really don't even know what happened, but my guess is that I was turning around and just lost my balance and fell. We were all outside, having just taken pictures and we were all on my parent's drive-way. My brothers tried to catch me, but were too late. I even reached out to my Mom (who was standing beside me), but she was walking away from me when it happened. Of course, I injured myself - haha. It wasn't bad, but I always fall on the same spot (my left knee) and because of that, the skin there is really thin and always ends up bleeding. I also got some road-rash. But, other then that (and my embarrassment!), I'm perfectly fine. It's just life. I fall, I get back up. That's what you do. I might have cried a little too - not because it hurt, but because I get frustrated. Ahh, life!! Anyway, Satan may have wanted to steal my joy and he may have for a minute, but only for a minute. I got back up, cleaned the blood off and carried on.

I've been doing a lot of travelling starting at the end of March and continuing through April to get ready for my brother and soon-to-be sister-in-law's wedding. I've had so much fun. First it was the bachelorette party. The next weekend it was a bridal tea. Then they came for Easter and this coming weekend, Mom and I head back to Alabama for another bridal shower. Their wedding is fast approaching! I'm going to go through withdrawals when I don't get to see them every weekend! 

I have great days when walking is no problem and then I have days where walking is a bit more difficult, but I thank God that my walking is nowhere near as bad as it was before I got the battery switched out. As I said in my last post, I'm giving myself grace and allowing myself to use a cane when need be without shame or embarrassment. I even had a dream last night about a girl (who wasn't me and no one I know in real life) and she was walking around town (OK, in my dream she was walking into a bar - don't judge! I don't know where that came from as I myself never go to bars!) and she was using a cane. Where this dream came from I have no idea, but I distinctly remember her walking into this bar with her date and she was using a cane and it wasn't any big deal. She used it as an accessory. 

This past week has been great (minus the one fall) and I'm so very blessed to be surrounded by family and friends whom I love and who love me. I hope you can say the same. We're all in this life together, so be kind. I'm speaking to myself when I say that too. My problems are a drop in the bucket compared to others' problems. Everyone is dealing with something. I hope all of you have a wonderful week and always remember...God's Got This!

Tune-In-Tuesday: March 30, 2021

Hey everyone! Happy Tuesday. My apologies for not updating last week. There really wasn't anything to update you on, so I thought I'd give myself a break from writing and give you a break from reading! This past week has been great and there really isn't anything to update you on from it either, but I decided to blog anyway.

On St. Patrick's Day, I got my first COVID-19 shot. I'm very thankful for that. I had to do some investigating first though. Wal-Mart turned out to be the winner for me (in being able to get an appointment and get the vaccine). The wording surrounding the qualifications at places such as Walgreens, Kroger and walk-in clinics did not include anyone with neurological diseases. Wal-Mart's wording did include those with neurological and/or neuromuscular diseases. I still had to drive about 30 miles from where I live to get the vaccine as the Wal-Mart(s) in my town were out of the vaccine, but 30 miles is nothing! My second dose is scheduled for April 14.

My walking has been getting better! I've also given myself permission to bring the cane with me when walking in parking lots or other wide open spaces. I don't have to use it, but it's there if I need it. This has been an internal growing process for me. I so don't want to have to use anything to walk but my own two feet, but sometimes I realize I do need help, so I'm growing up and allowing myself to be humble enough to use assistance when I need it. 

I think that's it for this week. See - not a lot to update on! I'm very thankful for the improvements I've made and that walking isn't such a struggle. I do know that from day to day my ability to walk correctly can change, but I'm thankful for the good days!

This week is my favorite week of the year - Holy Week. This past Sunday was Palm Sunday. This coming Thursday is Maundy Thursday where we celebrate Jesus' Last Supper. Friday is Good Friday where we commemorate Jesus' death, all leading up to the most glorious of days: Easter Sunday where Jesus rises  from the grave having defeated death, sin and the devil.

Thank you for reading this post and I hope all of you have a most blessed and glorious Holy Week. 

Always remember, God's Got This!