Tune-In-Tuesday: September 21, 2021

This is going to be a short post as not a lot has changed, but I made it a month and a few days on "Group D". However, on Saturday I decided enough was enough and I went back to my tried and true "Group A". (This is all in my deep brain stimulation device). I didn't feel stable at all in "Group D" - so whatever part of the brain it gives electricity to is obviously not the part of the brain that I need electricity in right now. I was in for a little surprise when I made the switch from "D" back to "A". On "D", I was at 2.90 volts. When I switched back to "A" it automatically went back to what I was on previously which was 3.60 volts and instantly - and I do mean instantly - my left hand curled into a ball. I couldn't get the electricity down fast enough. I thought to myself, "NOW, I know what my neurologist means when he says that some of his Parkinson's patients get instant results". Unfortunately, it's not my hand that gives me most of my problems - it's my leg and foot and it takes the electricity about two weeks to get there and/or to see any difference. I did find it rather curious though that my hand did react that severely to being at 3.60 volts since that is what I was at a little over a month ago and had no problems with my hand. I guess it's one of those things where I have to gradually build back up again (if need be) and hopefully I won't have to, but we'll see. As of Saturday I'm in "Group A" at 3.10 volts. I haven't seen a massive change in my walking, but it's only been four days. :) 

And now you're up-to-date. Oh, I also bought more band-aids - you know, just in case I fall. You can never be too prepared! 

Thanks for reading and I hope you have a blessed week ahead. 

Always remember...God's Got This!

Tune-In-Tuesday (but on a Monday): September 6, 2021 (A Long Overdue Update)

It's been a really long time - as in July 27 - since I've updated this blog. I've tried updating - once on August 3 and again on August 14 - but I kept getting distracted and "not feeling like updating" and life has just rolled on! So now, Labor Day, I'm getting a second or two to actually sit down and write an update. I'll include the "mini" updates I started on both 8/3 and 8/14 and get you as up-to-date as possible.

August 3 update: It's been a week and two days since I adjusted by deep brain stimulation system back to 3.60 volts on Frequency A and I'm still waiting on it work. ;) I've seen subtle changes, but nothing dramatic and I'm still using a cane or walker at times to get around. 

I see my neurologist again on August 12 for my normal 6 month check-up, so maybe he can suggest something to make my walking better. I'm already thinking I may need to play with the frequencies. There are many other frequencies that he has programmed into my device (and brain). I've been playing with the voltage, but not the frequency. Adjusting the frequency I think would be my next move, but I'll discuss it with him. I'm not sure why since my last surgery, in January 2021, I've not bounced back like I have with the other surgeries. The surgery was only to replace my battery. I'm a little concerned that I'm becoming too reliant on the cane (and in some cases the walker). I mean, yes, I do not want to fall, but I also want to be able to walk without a cane and/or a walker.  There are many factors in play that can effect my ability to walk. Some of those factors are stress, excitement (good or bad), the weather, when I take medication, etc. But, all of those factors are just normal, every day outside factors and I walked without a cane or walker before with all of those factors, so I'm a little discouraged. However, whenever I look back over my week or my month or my year, my memories don't contain the thoughts that I had to walk with a cane or walker. God is good like that! Our brains are able to filter out the bad (for the most part) and focus on the good things!

August 14 update: I had a doctor's appointment with my neurologist on August 12. I told him how much I've been struggling. It seems ever since I've had the battery changed, I've had issues. The battery is fine. It's charged and working. Dr. T. saw me walk (the thing I hate most - people watching me walk!). He observed that I was indeed struggling more. Neither of us know why really. He checked all my DBS settings and everything is working as it should be. He remarked that I was on the same level of electricity he had put me on the last time I saw him. I told him that I am, but I did play around with it at times. The higher I go up in the electricity, the more issues I have with pulling and cramping - especially in my hand. The lower I go the more problems I have with spasms and no control. So...what to do, what to do? We decided together to try a different group (I've been calling it frequency, but maybe that's not the right term for it). I've been on Group A for as long as I can remember, but we decided to switch me over to Group D. I just spent a good amount of time (today, Sept 6)  looking back through some of my blog posts to see when I was last on Group D and I didn't find it. :) I've been on Group A since at least 8/19/2018, was on Group B on 10/10/2017 and was on Group C on 5/30/2017. I got tired of looking to see when I was on Group D - haha. Suffice it to say, it's been awhile (if ever?)! Anyway, both Dr. T. and I decided to try Group D. As he was flipping me from A to D he said, " You might feel a shock." Gosh, that never gets old and for some reason, I never remember that that could be an option. I mean it is electricity we are dealing with here. BUT, thankfully (to date), I've never felt a shock when the doctor (or even when I) adjust anything, only a slight pull. Dr. T. talked about doing physical therapy. He had his on-site physical therapist come in and speak with me. We arranged for me to do physical therapy, but in the end (a couple of weeks later), I opted to post-pone physical therapy because of insurance changes that I'm going through. The physical therapist at Dr. T.'s office said that there is this splint (for lack of a better word) that is made that can be put right in the middle of my foot that can provide pressure and my applying pressure relieve some of the tension in my foot. I am not describing this well at all - sorry! When she mimicked what the device would do, my foot instantly relaxed - like magic! It's not fool-proof, but it would help. She (the physical therapist) also watched me walk and she said that my gait was not bad at all. I was picking up and putting down my foot correctly, so why can't I walk "perfectly"?!?! It's so frustrating!!!  Dr. T. asked if I had been under any stress lately because he remembered that stress highly effects how I walk. And, my answer was yes. I haven't talked about this in the blog, but in December 2020, I lost my job. My entire department was eliminated. It wasn't anything we had done wrong it was purely a business decision that was made and we unfortunately were the recipients of bad news. But so many people were (are) effected by unemployment because of the pandemic or other issues that I felt no need to harbor any resentment or hard feelings. Yes, of course, I mourned the loss of a job I had been at for 15 years and that I loved so deeply, but I also treasured the memories I made at that job and the people who became like family. The only thing I knew to do was trust in the Lord and apply like crazy for jobs. However, finding a job in a pandemic is not an easy task! Thankfully, I was so blessed with a 6 month severance package from my job. The 6 months ran out at the end of June and June and July were just a tad bit stressful knowing that I really, really, really had to find a job, but then God showed up. OK, He was with me all along, but I just love how He works. When we think he is being silent or not hearing our cries, He's actually working behind the scenes preparing us for what we couldn't even imagine. Out of the blue a former co-worker (at the company I was laid off from back in December) reached out and asked if I was still looking for a job. She was going to have an opening on her team and would I be interested? YES, 1,000 times, I would be interested!! So I had a Zoom interview and was offered the job working with people I knew doing what I love at the place I love. I started on August 9. I'm working through a temp agency for a year but praying that I can be hired back "officially" through the company. Anyway....all that to say that even though I really had a great 8 months "off" of work with many special things taking place, always in the back of mind I was stressed about not having a job and that in turn effected my walking. So, Dr. T. put me on Group D and on I went. 

September 6 update: I saw Dr. T. on August 12. On August 15, I fell. The "funny" thing about that fall was that as I was being helped and that still didn't stop me from falling. As I was sitting on the concrete after my fall, I didn't even attempt to hop right back up. Instead, I reached over to my purse and pulled out a band-aid right there and then and bandaged my knee up - right where I fell! My mom commented that at least I come prepared! If you were to look inside my purse, you would see band-aids of all shapes and sizes. Some people carry make-up, some people carry money, I carry band-aids!! ;) Fast forward one week to August 22 and I fall again. This time it's not so bad, but it does cause me to bleed again. August 26 marked two weeks since Dr. T. had changed the Group I was on. I made it two weeks, but nothing changed for the better. I finally decided on August 28 to change the settings. When I looked at the remote for my DBS system, I saw that not only had Dr. T. switched me from Group A to Group D he switched the the voltage from 3.60 to 3.10. Maybe that's why I was falling so much? I went from 3.60 to 3.10. But then again maybe not. As I understand it, in changing the Group that I'm in, it's stimulating a different part of my brain. It's actually quite fascinating to me. Group A has its part of the brain, Group B has its part, Group C has its part and Group D has its part. The electricity is now running through a different part of my brain. I decided to stay on Group D a little bit longer. Maybe it needs more than 2 weeks to work! I did however, change the voltage from 3.10 to 2.80. So, I went down. Don't ask me how I came to the conclusion to go down, I just did! It's only been 1 week and a couple of days since changing the voltage, but today I couldn't wait any longer. My foot has been curling in (like it did pre-DBS surgery) and I felt like I needed more, but I was cautious too. I only went up to 2.90 on Group D. We'll see if that makes any difference. If not, I'll "play" more and I can always go back to Group A if nothing on Group D helps. One thing I don't like is that I have to wait at least two weeks to see if anything good happens because of where the dystonia is in me (in my leg and foot). Dr. T. even brought that up again at my appointment. Some people can get instant results from adjusting their DBS system but I have to go and be "special"! I know I should have waited another week on 2.80 volts, but impatience got the best of me and Dr. T. has always said that if I feel like I can't wait two weeks to adjust it, then I should adjust it how I think will serve me better. So I adjusted. ;) 

And now, you are caught up. It feels good for me to document everything and get caught up as well. While at times, I feel like I have reverted back to pre-DBS walking, I know that I haven't. I will get past this rough patch and I will walk without a walker or cane again. I will. But for now, I'll rely on the gifts given to me to help me through the rough spots. As much as I despise having to use them, I'm very thankful to have them. To use a walker or cane is not defeat, it's help along the way. 

Thank you for reading and for being cheerleaders along the way. All of you are blessings to me from God. And on that note,

 Always remember...God's Got This!

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!!!

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!

Tune-In-Tuesday: March 16, 2021

Today I keep thinking it's Wednesday - what is up with that? How has everyone done with the time change? I personally love Daylight Saving Time (and yes, there is actually no "s" on the end of "saving"). I love when it's still daylight at 9pm! I do know that a lot of people don't like it though. It didn't effect me at all on Sunday, but it must have had some effect on me on Monday because last night as I was getting ready for bed, I glanced at my pill organizer and saw this:

I guess I just wanted to skip over Monday?! Maybe that's why I keep thinking today is Wednesday?! Good thing I take the same medication every day! 

Guess what, guys?! I'm walking better!!! Hallelujah, praise Jesus!! I noticed it last night. I was walking around my house and it just struck me that I'm more balanced, my walking is smoother and I'm not constantly thinking about every step I take. So, I took a moment and thanked the Lord, from whom all blessings come. That's not to say I won't have problems tomorrow, but for the here and now walking is wonderful - yay! 

While walking has been getting better, I've been having headaches. I'm not sure if they are migraine headaches or not, but when I have them they are only on one side and the only thing that seems to help them is to lay on that side of my head (basically put pressure on that side). These headaches could be allergy related or induced by jaw-clenching which I've caught myself doing recently. It's always something, right?! 

I'm going to let you in on a little more of the "behind-the-scenes" of deep brain stimulation. I've debated about sharing this, but it is what it is. Sometimes I'm much slower (for my age) in coming up with the right word to say and/or the word for an object then I was before the surgery. Yes, everyone experiences this at some time and as we get older we struggle more with it, but for my age, I lag a little more than normal. Example: It took me awhile (and a Google search) to come up with the words "pill organizer" that I used above. I thought of the word "pill" right away, but couldn't come up with "organizer". I thought of the word "box" and while Google said that word was correct too, it didn't seem correct to me - ha! It wasn't the word I was looking for. Anyway, the good news is, I do eventually come up with the right word to use, but since DBS surgery it can be a little delayed. The doctors and surgeons know this about me. It's a known effect of the surgery. It can be frustrating at times, but again, it is what it is and I do eventually come up with the word. 

But, back to good news. I am just so thankful that walking is better. I hope it remains that way but also know that this is something that goes up and down (literally - ha!), so I will rejoice on the good days and remind myself on the bad days that "this too shall pass." It's been a pretty good week all-in-all and I am so very, very thankful!

Always remember, God's Got This!

Tune-In-Tuesday: March 9, 2021

Since last week, I've seen tiny, minuscule improvements in my walking. It may or may not look like that to others, but however tiny, they are there. So, I will celebrate the tiny, minuscule improvements like they were big, over-the-top improvements because improvement no matter how minuscule is still improvement - praise Jesus!

I used the walker to get into church last Wednesday night. I didn't want to have to "fight" to walk, so I took the easy way out and used it. Someone asked when I was going to get rid of having to use it. This person asked in the most kind, sincere way and I was NOT in the least bit offended or put off by it. They were generally curious about it. So, I used my dad as my excuse - ha!! My dad has told me in the past that he would feel so much better if I just used a cane or a walker in parking lots (specifically the church parking lot) when I didn't feel steady just so that I would not fall. He's told me, "You can just use it to get in and out. If you feel like you can walk in church without it just park the walker and you don't have to use it." So, I finally stopped being stubborn and took his advice. I can't really answer people with a definitive answer on when I won't use the walker or cane anymore. It's just wait and see with me. 

The rest of the week, I practiced walking. Practiced walking. Who would have ever thought that at my age I would have to practice how to walk?! I (think I) know why God allows us to learn how to walk when we are just toddlers. For one, we're closer to the floor (therefore not having a long way to fall) and padded in diapers so when we fall we don't hurt ourselves as much. We also don't remember how it hurts to fall. And, we can crawl and it's an acceptable form of transportation. I mean I guess we could still crawl now but well, you know, most people don't!

Anyway, back to last week. I practiced walking. Some days I was steady, other days, not so much, but I didn't fall. (Just FYI, I don't use the walker or cane when I am at home. I am able to walk without them, it's just that I lose confidence sometimes when I'm out in the world.) On Sunday, I stopped by Walgreens on my way to church to pick up some pictures. I wasn't very steady and I wasn't feeling confident. I was definitely feeling like I was going to have to use the walker to get around. But then I got out of the car and walked in without a walker, without a cane. Wait - what just happened?!!!! I literally went from one second thinking, "I'm going to have to use the walker" (not even just the cane, but the walker!) to the very next second walking with my own two feet. How?! It was all God. By the time I got to church, I again was not sure what I would use (if anything) to get around. I got cold feet and ended up using the cane. But I used the cane and not the walker - progress! I didn't fall!! Today, as I was on Facebook, I saw a memory of what I posted 7 years ago: "Sometimes all that's needed is 2 seconds of bravery." That, my friends, is my life.

As I was beginning to put this blog post together yesterday, I got a phone call. I didn't recognize the number and was sure it was a robocall for the extended warranty on my car (those things are no joke! I get them every single day). But it was a local number, so I picked it up. I am so glad I did! It was my neurologist's nurse. At first I was thinking, "Did I forget to pay my bill? Did I miss an appointment?" But it was none of that. She was calling to tell me that Dr. T. got my thank you letter. He wanted her to call me to tell me thank you for it and that he really appreciated it. He also wanted her to tell me that he is a bit older than me - ha! If you've been reading my blog for awhile, I think I've written before that I think Dr. T. is my age. I actually put that in the letter - ha! So that mystery is solved. Although now I really want to know how old he actually is. :) Anyway, how sweet was that? I got a call just to inform me that my neurologist got my letter and he really appreciated it. I'm including this in the blog 1) so that I'll remember that I received a thank you call and 2) to encourage you to write a thank you card to someone you don't normally write thank you cards to but that really deserves your thanks. I will admit, after writing the letter I didn't put it in the mailbox until the next day. I grappled with it. I was kind of embarrassed to send it actually. I mean, who writes a thank you card to their doctor?! But then again, maybe people do and I'm behind the times?! What got me to actually put it in the mailbox was a comment on my blog post from my godmother who said that she thought it was great that I wrote him a thank you card. And even then, I put it in the mailbox, but the mail had already come that day, so I debated for another 24 hours on whether I should just take it out of the mailbox. But I didn't. And when I saw that the mail was picked up, I panicked a little. There was nothing I could do then. Unless it got lost in the mail, he would get it. Then I got SUPER self-conscious about it. It was definitely outside of my comfort zone. But in the end it turned out great and now he knows he's appreciated and I know he's older than me. :)

I was reading something about the actress Selma Blair. She has MS. As I was reading this article, I was pleasantly surprised to see she mentioned dystonia! Dystonia can be its own condition/disease, but it can also be a symptom of other diseases like MS. She also mentioned one of my favorite words: proprioception. I just feel smarter when I say that word! It means where your arms and legs are in regard to time and space. Anyway, here's the snippet where she mentioned it: 

OK, I think that's it for this week's blog. I know I've written another novel here and if you've made it this far, thank you for reading! 

Always remember, God's Got This!

Tune-In-Tuesday: March 2, 2021

Ugh. How's that for a start to a blog entry? This past week has been rough. Grant it, I have not fallen - so I'll take that as a win, but walking has not been fun, easy or effortless. I'm a perfectionist and I see things in black and white. Dystonia is not black and white. My walking is not black and white. It drives me nuts sometimes. I don't like having a condition that can't be cured with a drug or a surgery or a therapy. OK, my venting is over with - haha. 

As I mentioned in my last post, I saw my neurologist on February 22. During that appointment, he showed me how to turn my device completely off and back on again. My device was off for less than a minute, but needless to say I am convinced that that is what has caused my "horrible" walking this past week. How's that for armchair doctoring?!! You see, I want to blame something, anything on why I can't walk like I want to, when in reality there is nothing and no one to blame; it just is. So, with my non-existent medical degree, I'm "starting over" my two weeks until the electricity reaches my leg/foot/toes. Today marks one week. 

Last Wednesday night, I used my cane to get into church, but halfway between my car and the church door, I got "stuck". I'm going to try and explain this the best way I know how, but we'll see if it makes sense. I use the word "stuck" because that is how it feels. It feels like if I make one more move, I will fall, no matter what move that is. So, I almost freeze in place. I feel as if I bend my knee, lift my foot, even position the cane differently, I will fall. In these cases, I almost want to fall, because I feel like if I fall it'll loosen me up. Weird, right?! Anyway, I got stuck and literally felt like I couldn't take another step. Thankfully, my associate pastor saw me from inside and (pausing the class he was teaching) came to my rescue by lending an arm to me. The "funny" thing about this whole experience is that earlier in the day I watched the "Wednesday Wanderings" video he and my dad had done. They spoke about Peter walking on water. I don't know if I've mentioned on this blog before or not, but I most identify with Peter in the Bible. He's gung-ho and yet is a complete mess at the same time. He's always getting himself into trouble somehow or another and sticking his foot in his mouth. That is me to a "T". Anyway, as long as Peter had his eyes on Jesus, he was able to literally walk on water. Once he took his eyes off of Jesus and saw the waves, he started to sink and yelled out to Jesus to save him. That was me on Wednesday night. I was fine as long as I kept my mind on Jesus, but once I started looking around and took my mind off of Jesus, I got stuck. My "crying out" to Jesus was done internally. He didn't let me fall and used my associate pastor as his arms that night. I still had issues walking while inside of church, but I made it without falling. After church, my mom helped me out to the car and then I was done for the night. I went home and laid on the couch. :) 

I had my one month post-op appointment on February 25 with my neurosurgeon (rather, his PA). I was determined to walk in without a walker or cane. I did it, however precariously. I don't know if it's my stubbornness, foolishness, tenacity or what, but I have this burning in my soul to prove to people I can walk without a cane or walker. I'm pretty sure I cause myself more stress and worry than I need to by always trying to prove something. Anyway, my appointment went well. I think it took me longer to find a parking spot in the parking garage then it did the actual appointment. The PA cleared me to start working out again and doing yoga. Working out may have been the first thing I did after getting home from the appointment. It wasn't that long ago that I loathed working out. I hated even the thought of doing it. Now, it's something I love. It's a stress reliever. Even when walking is a struggle, I can still exercise. I use a stationary bike, so I can't fall. When I feel like I have no control over how I walk, I feel powerful when I exercise.

When I went out of the house this past week I used either my cane or the walker. At grocery stores, I used carts. There were times that I practiced walking without anything but my own two feet. Those practice sessions went well. It's so weird. I really never know what I'm going to do until I do it. Meaning, whenever I get somewhere and get out of the car, that's when I decide what I'll use (or not use).

Sunday, I used the cane to get in, around and out of church, but when I went to my parent's house after church, I used nothing. I'm convinced that I was only able to make it in to church because once again, my Sunday School teacher was walking in the same time I was and helped me (we seem to be arriving at church at the same time as this happened last week too). Walking out of church, I was doing OK, until the wind picked up and I lost my confidence. Thankfully a friend came right up beside me and helped me. I should have used the walker. Hindsight's always 20/20.

Yesterday (well, actually February 29, but since this isn't a leap year we'll go with March 1) was the 5 year anniversary of having the battery initially implanted which means that that was the last of the DBS surgeries (3 of 3). It wouldn't be for another month (on March 29) that I would have the device turned on, but it was the last of the surgeries.

There have definitely been times and days this week where I didn't have to use a cane or a walker at all. I am extremely grateful for them. I just want them to last longer!! (Have I mentioned before that I'm very impatient?!)

While this past week hasn't been the absolute best, it by no means has been the absolute worst, so I'm praising Jesus for that! It's one day at a time, one step at a time.

Thank you all for reading (I know I tend to write novels here in this space) and for continuing to follow along.

Always remember: God's Got This!

Tune-In-Tuesday: February 23, 2021 FIVE YEARS!!!!!!!!!!

In my last entry, I thought maybe I was through using my walker and then the next day came and I lost my nerve and used the walker again. I was frustrated at myself, but I didn't want to fall, so I used it. This is not just a one-way journey. It has lots of backslides, but I'm growing through it all, so that's the positive. Wednesday, Thursday, Friday, Saturday - every day, I used the walker, but then Sunday came. I had the walker and my cane in the back seat of my car as I drove into the parking lot at church. I'm notorious for losing my nerve walking in the church parking lot (even though I park in the closest handicap parking space available!). I didn't know what I would do. Would I push through my fear or would I wait another day to do that? Well, I pushed through my fear. I did use my cane, but I did NOT use my walker. My Sunday school teacher came up beside me and asked if I needed help. I just asked that he walk beside me, you know, just in case! And he did. And I walked in without having to grab ahold of him - yay!! I walked out of church later without fear! Yesterday (Monday), I walked completely walker AND cane free - PRAISE JESUS!!!!!!!!!

Today's a big day because it's been 5 YEARS since my deep brain stimulation surgery. It was February 23, 2016 when that surgery occurred. FIVE YEARS AGO!!!!  Some days that feels like just yesterday and other days it feels longer then that - ha! If you'd like to read what I wrote about the DBS surgery, you can do that here: It is Not Brain Surgery!: 2 Down, 1 To Go

To celebrate this momentous occasion, I slept in today and then explored some of the Foothills Parkway in the Smoky Mountains. It was good to just get away from the day-to-day. The weather was perfect - in the 60's and the views reminded me once again of how awesome God is. 

How it was going 5 years ago on the left to how it's going today on the right

Feeling wonderfully blessed

After my drive on the Foothills Parkway, I came home and wrote a thank you letter. Yes, a thank you letter - not a note. A note is something you write a few sentences in, this was a letter. I wrote it to my neurologist, Dr. T. I should have written it five years ago, but better late than never! Since it's the 5 year anniversary of the surgery, I was reminiscing and re-reading through my blog posts and it occurred to me that I never put down in words what exactly Dr. T. meant/means to me. He's not the neurosurgeon, so he didn't do the surgery, but he was with me before, during and after the surgery. Yes, of course he's my doctor and it's his job, but over the course of the past 5 years, he's done so much (and continues to do so much) that I thought it was time to send him a thank you letter. He's informed me, he's advocated for me, he's cheered me on, he's been frustrated with and for me - he deserves a letter! Three pages later, I finished the letter. What's that about me writing a book again? I most certainly have the words for it! I also need to write my mom a thank you letter. Again, after re-reading through my blog posts, she's my hero. I mean she's the one that took me to doctor after doctor (if they were out of state). She's been with me through all the surgeries, all the pain, everything. Dad held down the fort at home and he's seen me through everything too, but Mom was the one sleeping on chairs in hospital rooms, holding my hand through the worst night of my life when I wanted to die (because the pain was so bad). I owe her a hand-written 3 page thank you letter too, but it will have to be another day because I have writer's cramp now (fun fact: that's a form of dystonia too!). I should write Dad a thank you letter too because he's cleaned up more of my puke then anyone else, I think - including the infamous Christmas Eve when I puked all over his and Mom's driveway. He was too tired to clean it up that night (after preaching at three services), so he decided to leave it until the next day. But in the morning, he found it had frozen. There's nothing worse then cleaning up someone else's puke - so thank you, Dad!

I had a check-up with my neurologist, Dr. T. yesterday. And since it's been 5 years and I'm on my third battery,  he said that the next time I have to have the battery replaced we should highly consider doing a rechargeable battery. I told him I didn't think I could have a rechargeable battery since I've gone with the non-rechargeable one since the very beginning. He debunked that theory! He said I was too young to be having surgery every two and a half years. I completely, whole-heartily agree! He is at a loss though on why my batteries only seem to last two and half years. I'm not on the highest setting. I'm not doing anything "wrong" - they just seem to deplete faster in me. He said that the rechargeable batteries last 15-20 years. The downside is that I have to recharge it. I asked how often that would need to be done. He said it depended on how much "juice" was being used but some patients have to recharge it every couple of days and others can wait a week or so. I'm not completely sold on the idea of having to recharge it that often, but I have time and I'll do research on it. Who knows, maybe two and half years from now the recharge rate will increase or there will be other options. He also asked about my shoulder pain. I told him it's still there, although since I haven't been able to work-out since my surgery it's barely bothered me. He asked that I get my primary care physician to look at it. Once I told him, I'd already talked to my PC about it and he thought it was muscular, he made me promise to ask for an X-ray, just to be 100% sure everything is OK. He said he could do an X-ray, but he'd still have to send me to someone else if the X-ray showed anything, so I promised, I would have my PC get an X-ray of it.

Dr. T. also showed me how to turn my DBS device off. I'm ashamed to say, I didn't know how to do that. It turns out to be super easy to do. He just reminded me that if I ever do turn it off, to remember to turn it back on! Now I can have EKG's (one thing needed and/or requested before surgeries) and my system won't mess them up anymore. 

One thing Dr. T. commented on at my appointment was the fact that I could tell the deep brain stimulation works. How can I tell? Because of how I felt/walked before the battery being replaced via how I feel/walk now. It's like night and day I tell you! He said that he's still frustrated (me too, me too!) that he can't get my foot to relax anymore then it is, but is happy that I'm happy to know that the DBS does work for me. We (Dr. T. and I) are both HUGE perfectionists. And I emphasize the word huge. Yes, we both want more. I am nowhere near "perfectly" walking and I want that. He wants that for me. BUT - at the same time, gosh am I blessed mightily to be the way I am today. Five years ago I was using a walker everywhere I went. I fell all the time. I was miserable. Yesterday, I walked into the neurologist's office (however precarious it was - it was pouring down rain and the wind was gusting) on my own two feet without a walker or a cane. I didn't fall. So, while I want "perfect" walking (and I'll still strive for that), I am blessed beyond measure by deep brain stimulation. Until my dying breath, I will advocate for it.

I have my one month post-op appointment with the neurosurgeon (well, rather his PA) on Thursday (Feb 25). Hopefully after that appointment I can get the all clear to start working out again. I've got my brother's wedding to get in shape for and since I'm the OLDEST in the wedding party (this is what happens when there are 11 years (and two other brothers) that separate us) - and, well, I just want to look and feel and walk my best. :)

Five years has flown by and at the same time dragged on! Here's to the next five years and the five years after that and well, here's to LIFE. It's not easy, but boy is it worth it. Thanks for continuing on this journey with me! God's Got This!