Tune-In-Tuesday: July 27, 2021

I took last week off from blogging because we were celebrating my grandmother who turned 95 on July 21. We had a wonderful time taking her to see the play "Driving Miss Daisy" and celebrating with cake and ice cream. 

As for me, I adjusted the electricity in my deep brain stimulation system. I had been on Frequency A giving myself 3.60 volts of electricity, but felt like I needed more. So, on July 9 I adjusted the electricity and went up to 3.70 volts. I lasted one day shy of two weeks (the length of time it usually takes to see a difference in my walking) on this setting before adjusting it down to 3.50 volts on July 22. But on Sunday (July 25), I went back up to 3.60 volts. It's been crazy. 3.70 volts ended up being too much. 3.50 ended up being too little. Hopefully, 3.60 volts will be the "sweet spot" again. Maybe my body just needed to see what was too much and too little again to realize that 3.60 is the right setting? I really have no idea. It's all just trial and error, but for now, I'm back to 3.60 volts on Frequency A. It's not been perfect, but perfect is boring, right?! :)

At 3.70 volts, the electricity was too high. How did I come to this conclusion? My left hand. I had so many problems with it being too stiff. I couldn't open and close it normally and when I gripped things (i.e. my cane), I gripped them way too hard to the point of my hand aching. It's really hard to describe how I know this was too much electricity, but I just know. Since I had been at 3.60 volts just two weeks prior and it wasn't working for me, I decided to go down to 3.50 volts and yet that proved to be too little electricity. I felt too free - ha! How to describe how I felt at 3.50 volts - well, my leg muscles were just too much like jelly. They were too loose. I felt like I had no control over them. I was getting more spasms. I guess both cases (being too high and too low) can be summed up like this: I had no control. No control over whether I was going to have a muscle spasm or whether my foot would just shake and not be able to give me a steady anchor. 

I try to convey how I feel or what life is like for me, but really (and I don't mean to disrespect anyone by saying this) you can't really know unless you have the same experience. Isn't that true about a lot of life's experiences?

I know stress exacerbates my symptoms as does a lot of other "outside" factors. I know this is true of a lot of other diseases that a lot of other people suffer through, so I know I'm not alone in that department. The older I get, the more I am aware that ALL people struggle with something. I try to give grace because grace has been given to me. I'm trying to give grace to myself as well. It's hard for this type-A girl to not be "perfect". I put a lot of undue stress on myself by letting pride come before the (sometimes literal) fall. My self-esteem plummets at times, but then I just have to remind myself that I have something I can't control and sometimes I just have to use assistance in whatever form that takes place in (cane, walker, a helping hand). Sometimes that assistance also comes in the form of a good cry behind the scenes before I pick myself up, wash my face and carry on. I know I'm not alone in this either! 

I can be having a down day or moment, but then I'm reminded how loved I am by God. I'm reminded that I'm not the only one walking through a storm. I'm reminded that God sends storms in life to test us. He's always with me; He just wants to see if I'm always with Him. I never pray harder or seek Him more then when in the belly of a storm. He wants me (and all of us) to seek Him, to trust Him, have faith in Him and call upon Him in the mountaintop experiences as hard as we do when we feel like we're sinking in the depths of a storm. God is good all the time and all the time God is good.

Always remember...God's Got This!

Tune-In-Tuesday: July 13, 2021

Ya'll, I never know how to start these blog posts. Am I supposed to say "Hi everyone! Thanks for stopping by and reading."? Or am I supposed to just dive right in to the update? Maybe someone who's a better blogger than me can fill me in. ;) 

On Friday of this past week, I finally did it - I adjusted the electricity in my deep brain stimulation system. I went from 3.60 volts on Frequency A to 3.70 volts on Frequency A. And now, I wait. God's still teaching me how to be patient because I'm a slow learner. ;)

On Friday afternoon, my sinuses started to hurt. I immediately thought, "Is someone cutting the grass?" I thought it might be allergies. Then, the pressure moved from my sinuses to my head. My head was throbbing. A little while after that, I thought I had a fever. I broke out in a sweat, just laying on the couch. I got nauseous and really, really wanted to throw-up, but that didn't happen. My head hurt so bad (but just on the left side) that I had flashbacks to the night I spent in the hospital after my deep brain stimulation surgery. Thankfully, it wasn't quite as bad as that night was (if you want to know all about that night, you can read an old post of mine found here: It is Not Brain Surgery!: 2 Down, 1 To Go), but it was enough to send me to bed at 6:30pm. I couldn't do anything but bury my head in the pillows and try not to move or look at anything. Thankfully, I don't get headaches too often, but I have family members that get migraines every once in awhile, so I hope I'm not inheriting those! I am pretty sure this had less to do (actually nothing to do!) with my adjusting the electricity in my DBS system and more to do with clenching my jaw (which I noticed I had been doing and tried to stop!). When I woke up on Saturday, I immediately praised Jesus that I didn't die and then I praised Him that the headache was gone. I've been re-watching the TV show ER (for like the 2 millionth time!). I'll usually watch an episode or two before I go to bed. Well, I obviously didn't watch it the night I got the headache, however, I did watch it on Saturday night and had to laugh. You can't say God's not got a sense of humor and that He doesn't protect us from ourselves. The episode that I watched had a woman come in complaining of some ailment (Ha - I can't even remember what right now!). Later in the episode, after she's back from having a test, she starts complaining of a headache. When the nurse goes to check on her later in the episode, she finds her dead. She'd had a cerebral aneurism. Had I watched that episode the night before - when I had my major headache, I would have been convinced that I had the same thing. See, God was watching out for me!!

On Sunday, I was wary of walking into church. I had just adjusted the electricity and was scared I'd get "stuck" in the middle of the parking lot not being able to walk, so I used my walker. I might have had a bit of the "yips" so to speak. There was also another reason why I used it. I have this sore on the bottom of my left foot that is making it very uncomfortable to walk. It's very weird. It looks like there may be a sore (or maybe dried blood) under a callous. Is that even possible? I'll spare you a picture of it - although it really just looks like a callous, but boy does it hurt. It's the result of the way I walk (or have been walking recently). I hope that with the increase in electricity, I'll walk better and the sore will go away. Only time will tell. I hope I can make it the full 2 weeks on this new level of electricity, but if I have muscle spasms while walking (which hasn't happened yet), I may choose to lower it again. I have to find that "sweet spot" again - the one where I don't have too much or too little electricity. I noticed last night when laying in bed that my foot wasn't curling in, so that's a good sign. Again, only time will tell.

I had two friends that had brain surgery yesterday. TWO - and on the same day!! I'm happy to report that both of their surgeries went well.

My grandmother mentioned to me that someone asked her how I could exercise if I couldn't walk well. I'm not even sure how that topic came up, but I thought I'd answer that question here. :) First, I do exercise. Second, I use a stationary bike. It's perfect for me. I get a really good workout and I don't fall. I watch TV and listen to music at the same time (hey - whatever it takes!) while working out. I actually took this picture a few days ago because I thought the number was cool (I know, I'm weird!): 

And with that, I'll close. Thank you so much for reading!

Always remember - God's Got This!

Tune-In-Tuesday: July 6, 2021

I hate admitting that I have physical limitations. I hate that I can't walk like everyone else. But, every once in awhile having walking issues does have its perks - ha! My mom and I were once again able to go to a concert because I have problems walking. She got us front-row seats to a "sold-out" Eagles cover band concert this past Friday. It was sold-out except for two seats - one of them being for a person with a disability. Now, don't get me wrong. We don't just pull this "disability card" out to gain entrance to concerts or sympathy from anyone, but having to use a walker from time-to-time does allow for fun things to happen every once in awhile. I do find that using a walker is so much more "freeing" at times then trying to do it (walk) on my own (or even with just a cane). Getting around amusement parks, parking lots or wide open spaces is so much easier when using a walker. I sat next to a woman at the Eagles concert who used a cane, but said that she finds a walker much easier to use as well in all the above mentioned places with an emphasis on parking lots. It's not all just in my head - haha! What do I mean by that? I mean, up until I had this conversation with her, I thought that maybe I'm just making parking lots a lot scarier in my head then they actually are, but she confirmed that she also has struggles in parking lots where there's nothing to grab a hold of if need be to keep from falling. And the main goal in both of our lives is to not fall. Neither one of us fell at the concert - praise Jesus!  The concert was amazing and Mom and I had a fantastic time once again making memories together.

I've been grappling with the idea of playing with the settings in my deep brain stimulation system again. I just haven't been walking like I want to. I rarely walk anywhere (outside of my house) without a cane like I did before my latest battery replacement surgery in January. I see my neurologist again at the beginning of August, so does that give me enough time to change the settings and see if things improve? I don't know why this particular area always gives me pause. I should just go full-force into committing to "fool around" with the settings, but I don't. Five years into having a deep brain stimulation system and I'm far less eager to "play" with the settings then I was right after getting it implanted. But things just aren't "right" yet. (Have they really ever been?! I mean...I always want better then I have!)

I had yoga yesterday and I was trying to do this move ("bouncing" my feet up and down) and I couldn't do it. At first, neither foot was doing it, but eventually the right foot got its act together and did the move. My left foot, however, wouldn't bounce. No matter how hard I tried. No matter how much brain power I put into it - it didn't move. No matter how much I tried to do it "automatically" (without putting any brain power in it), it wouldn't move. I don't know if that has anything to do with the electricity or not, but it frustrated me. I want to move freely! And then I feel guilty for complaining or getting frustrated because there are people out there in much worse shape then I am and then I stop and just thank Jesus for everything I do have - and I have so very, very much!!

So there you have it - a quick little update. I hope everyone had a wonderful 4th of July weekend and that everyone will have a wonderful rest of the week.

Always remember - God's Got This!

Tune-in-Tuesday: June 29, 2021

I just realized that I have not updated this blog is almost a month! That's partly because I haven't had time and partly because I haven't really had anything to update everyone on. So here I am, squeezing in a post (or at least the beginnings of a post) before I have to leave for an appointment in a hour. 

The past few weeks have been pretty good overall. I did fall once and of course bloodied my knee, but that's my life. I fall, I get bloody, I get up and carry on. ;) 

This week is BIG in my family. We have so many birthdays and anniversaries within 10 days it's not even funny! It is fun though!! I love birthdays and celebrating. It's just such a fun time of year for my family. I'm thankful though that my mom and dad chose June to be the big month of celebrations because I need the 6 months in between June and Christmas to save money. :) 

One thing I did want to mention is that I'm (finally!) reading the book my brother and sister-in-law got me for Christmas. (I know, I know...it's 6 months later and I'm finally getting to it, but better late then never, right?!) It's a book I requested. It's titled No Time Like the Future. OH.MY.GOODNESS. Why did it take me 6 months to delve into this book?!?!?! It's like someone gets me. I feel like I'm reading a book about myself. Now - just to clarify - I do NOT have Parkinson's (nor do I ever want Parkinson's) like Michael J. Fox does, but holy moly, some of the stuff he talks about in this book - it's like I'm looking in a mirror. There are similarities (in our symptoms) between Parkinson's and dystonia. But believe me, I so got the better deal. I would take dystonia a million times over Parkinson's. Anyway, what he writes in this book is so similar to what I experience and go through that I now can not read the book without a pen in hand to underline sentences and paragraphs that are so relevant to me. 

*****

Ya'll - I am SO SORRY!! I started writing the above on June 8. It's now June 29 and I haven't posted what I wrote above or anything else since May 18- AHHH!!! Sheesh. It HAS been a busy time, but that's still no excuse. So...here's what's been going since May 18 to catch us ALL up! ;) I'm literally getting my calendar out out to make sure I remember everything I've done!

I'm still reading through Michael J. Fox's book and it's still blowing me away. I'm still underlining almost every other sentence. I almost don't want it to end.

A lot of my time has been spent helping take care of my mom who is recovering from shoulder replacement surgery. I've been driving her to physical therapy appointments and helping make meals. In regard to the meals: she's told me what to do and I've been her arms. I'm not a cook at all. My mom is, but it's been fun (most of the time!) learning her recipes and how she cooks them. 

I spent Memorial Day weekend with my family at my brother's house on the lake. While the "holiday" of Memorial Day is one of sadness and remembrance, the time spent with family and friends is wonderful. Thank you to all those who died so that I might be free. 

I went to Dollywood with my Mom and my oldest niece on June 4. We had so much fun. Dollywood was still celebrating their "Rhythm and Blooms" festival and the park was decked out with all sorts of beautiful flowers. I brought my walker with me and I'm so glad I did. For amusement parks, I need to use the walker. It's so much easier to get around. My niece, when she got tired of walking, rode my walker while I pushed. She also took a million selfies of us (some of which I knew about, but some of which I did not!) on my phone. :) My niece got me to go on this pirate ship pendulum ride that I thought I was going to die on. I do NOT do heights (or for that matter any roller coasters or rides that make you feel like you're falling). She sweet talked me into going on this ride. Note to self: do not go on that ride again. Once was enough for me. :) We DID have a blast riding the Raging Rapids water ride. That is my all-time favorite ride at Dollywood. I of course (not wanting to get soaked) got soaked while my niece (wanting to get soaked) hardly got soaked at all! We all three had fun watching the shows and eating all the eats. It was also national doughnut day that day and we each got a free doughnut at Krispy Kreme before we even hit the park. It was such a fun, fun day!!!

Dollywood!

All of this was edible - even the flowers!

One of the biggest updates I have is the arrival of my 4th niece on June 7. Like I stated before, June is a HUGE month of celebration in my family. My middle brother and I actually share the same birthday - June 12. We are not twins - there are 7 years between us. Then he decided to get married on our birthday. His third daughter was due the day before our birthday (and her parents anniversary), which also happens to be my parent's anniversary. But she arrived via C-section on her own day to celebrate. I'm in love with her. It doesn't get much sweeter then holding a newborn baby. If you know me at all, you know that one of my favorite titles in life is that of Aunt Stephanie. It doesn't get much better than that!

On my birthday, my parents surprised me with a day in Nashville. My mom and I had a blast. We had lunch at Blake Shelton's Ole Red restaurant. We then took a backstage tour of the Grand Ole Opry where we got to have our picture taken in the iconic circle on the iconic Opry stage. Then we wandered about Madame Toussaint's Wax Museum. After that, we got Dippin Dots (although they were called something else) out of a vending machine in the Opry Mills Mall. I got birthday cake flavor because after all it was my birthday. Then the big event came: Mom had gotten her and I tickets to the Grand Ole Opry that night to see Steven Curtis Chapman, Tracey Lawrence, Rhett Akins and Thomas Rhett. I had mentioned to her just a week or so before that, that Thomas Rhett was going to be preforming on my birthday in Nashville. However, I had no expectation of ever going because I thought it was way too late to get tickets. This is where God works ALL things together for good (even the small things). My mom literally got the last two tickets available to the show and the only way she was able to get them is because one of them was for a handicapped individual (i.e. wheelchair bound) and a guest. This meant that there was one seat and a space for a wheelchair. Well, I'm not confined to/nor use a wheelchair, but after using just my cane for the first few stops on my birthday adventure, I opted to use my walker for the Madame Toussaint's tour and the Opry Mills walking. It was SO MUCH easier to get around. So for the show, I once again used my walker and opted to sit in it for the entire concert. It was MUCH comfier then the hard back chair they offered me. And there you have it, because of my walker, Mom and I were able to obtain the last two tickets to a show I had really wanted to see and on my birthday no less! I, of course had to get a poster of the event because it had my birthday on it! This was also a full circle moment as the last concert (before the COVID pandemic hit) Mom and I saw (she's my concert-going buddy!) was on October 10, 2019 and it was Thomas Rhett and his dad, Rhett Akins opened for him. I also got a poster at that concert. Now, the first concert we went to after the COVID pandemic was Thomas Rhett with his dad, Rhett Akins opening for him. You can't tell me that wasn't God-ordained!! We ended the night by staying overnight with friends, Chris and Sandy, who had recently purchased a new home in Murfreesboro, TN. It was such a great birthday and one where beautiful memories were made. 

So fun!!

Full Circle

On June 18 and 19 my mom, dad, my oldest niece and I went to Kentucky. We left on the night of the 17th and made it to Williamstown, KY. On our way, we stopped in Lexington and ate at a "fancy" Italian restaurant. The next day while in Williamstown, we toured the Ark Encounter. If you haven't been, you really should go. It's massive (as the Ark was!) and really something to behold. We spent about 6 hours there. There's a lot to read and take in, but with a 6 year old in tow, we skipped a lot of the reading and went right to the exhibits. It was fascinating and enthralling. The Ark is the length of 3 football fields. So, I once again used my walker (although I took my cane with me too). It is so much easier on adventures like these to use the walker. Yeah, I sometimes get stares, but overall, people are super kind and accommodating and I can (for the most part) keep up with those I'm with. My dad reminded me as we were going to get breakfast at the hotel that I can't help it. He said he saw some men smoking outside the hotel. They have a choice. They can choose to stop smoking. I can't choose to walk normal. Oh yes, deep brain stimulation surgery helped in a big way, but I still have issues and probably always will. It just is what it is. :) Anyway, I used the walker at the Ark Encounter. It didn't dampen the day or the experience at all. As a side note, the Ark Encounter is completely handicap accessible, so if you too are handicap, don't let that keep you from going. We had so much fun at the Ark. Inside the Ark, it's all air-conditioned (praise Jesus because it was 90 degrees out when we went) and there are three levels. I was in awe to see everything. I had heard from someone at our hotel that the Amish helped build it (the replica, not the original - in case you were confused - haha!). There were lots of Amish and Mennonite families visiting the Ark the same day we were. We met some Hutterites at our hotel. It was interesting meeting and interacting with all of them. After the Ark Encounter, we drove back near Lexington and stayed overnight at Shaker Village. That was a fun experience and my niece commented that she loved the hotel room much more than the one we stayed at in Williamstown. :) We ate dinner at Shaker Village and enjoyed live music and the grounds that evening. I was able to get around with just my cane. The next day, we drove into Lexington and took a bus tour of horse farms. My niece is hugely into horses these days and we had a blast learning all about the different farms we visited and the horses there. We were able to pet the horses and feed them peppermints (Who knew they liked peppermints? It was news to me!). I again was able to get around just using my cane, which I was very thankful for because we were rather squished in the bus (i.e. no room to bring a walker!). After the horse farm tour, I thought we were done and would be heading back home, but Mom and Dad had one more surprise for me. We took a 20 minute detour and visited my college campus. I graduated from Asbury College (now University) in 2002 and hadn't been back to the campus since. It's in a little town called Wilmore. The campus hadn't changed a bit and had radically changed all in the same breath. My dorm building, the administration building, the chapel and buildings that I took classes in were still the same and yet there has been so many new buildings added on and to the campus in the 19 years that I've been away. But, it still felt like home. My niece was stunned to learn that I lived there for 4 years - haha! We couldn't go in any of the buildings as they were all locked, but just seeing them and the campus did me good. I only used my cane to get around. At one point, I went off on my own in search of the new media communications building, which I found, and as I walking back to my family, I thanked the Lord that I didn't have problems walking while I was a student there. I think had my dystonia been in full force back then, I would have had some trouble getting around. But then again, who knows, maybe not. God works everything out for our good! After the college campus tour, we made it back home safely to Tennessee. 

The Ark Encounter

Where we stayed in Shaker Village

On our Horse Farm Bus Tour

On my college's campus

I've been struggling just recently (the last few days) with walking. I don't why. I checked by deep brain stimulation settings and everything's fine there (still on 3.60 volts on frequency A). I gave myself a little scare when I could not find my DBS remote in my purse, but then I looked in my walker (there's storage attached to it) and found it - whew! I have a big callous on the bottom of my left foot that's really hurting (it's from not walking "correctly"). Or maybe it's not a callous, because I don't think callouses hurt - maybe it's a blister. Maybe that's what's causing me problems. Who knows really. It's the rhythm of my life. :) The best news though is that I haven't fallen since May.  Hopefully I haven't just jinxed myself. 

I've had many fun adventures over the past month and half and I'm very thankful for all of them and for being able to do them, even with issues walking. It just goes to show you, that even with disabilities in life, you can still have a full, fun life. I won't think back on these adventures and think of the walker or the cane or any difficulty, I'll think back on them with wonderful memories of getting to see one of my favorite performers in concert, getting to pet a kangaroo, experiencing fine dining with my family, listening to music out on open fields, getting to show one of my nieces where I went to school, asking a horse to smile and him actually smiling, sweating buckets and all the million other memories we made.

Thank you for reading my book. I'll try not to let so much time pass before updating again.

Always remember...God's Got This!

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!!!