Tune-In-Tuesday (but on a Saturday): February 12, 2022

I'm back!!!!!!!! Haha. I took an almost 5-month sabbatical from updating this blog partly because life got really busy (but when is it not?!) and partly because I really had no significant updates to post about. As much as I'm "out there" in these posts, after I post a new blog, I get somewhat embarrassed at times about what I've shared (even though it's the truth). It is much easier for me to share in written word then face-to-face (again, I get shy and introverted). So, I just needed a little break, but today I feel like writing and sharing, so I'll update you on what's been going on with me.

The past 5 months have been rough. If you've seen me face-to-face in real life you know I've been using my walker and cane almost always. I don't know what happened, but ever since my last (deep brain stimulation) battery-replacement surgery (which was in January 2021), I've never regained the walking ability I had been experiencing before that battery started dying. Half of me thinks it's my fault for not pushing myself as hard as I had been - pushing myself to be brave and walk. When I use the walker, I don't have to think about walking at all, I walk like a normal person would. When I use the cane, I think about walking a little more. When I walk unassisted, my brain is in over-drive, and I have to put all my concentration into walking without falling. So, I equate (in my messed up, imperfect brain) using the walker with laziness. No one's ever told me that or put that thought in my head except for myself (so I have no one to blame but myself - ha!). In fact, most people want me to walk with the walker (if I feel like I need to) to keep from falling (at least in wide open spaces like parking lots where I tend to fall a lot). In my brain, I feel like since I had the deep brain stimulation surgery, if I use the walker or cane, I'm a failure. Have I told ya'll before I'm a very black and white person?! There's no middle ground with me - I'm either all in or all out. ;) 

Since my last post (way back in September 2021) I have not changed any of the settings on my deep brain stimulation device. I've needed to, I just haven't. I got tired of "playing" with the settings trying to find the "sweet spot". I just threw the towel in so to speak and kept it where it was. Pretty much the only places I don't use a walker or a cane are at my house, my parent's house or at yoga. :) BUT - I'm feeling inspired again to work on walking without any assistance.

I saw my neurologist this past Thursday (February 10). This is probably where my inspiration to work at walking unassisted again came from. I used a cane to get into his office, but I probably should have used the walker. :) This is so me, but so weird too: I don't mind using the walker anywhere else, but when it comes to walking into the neurologist's office, I don't want to use it. I don't even want to use a cane, but this time I had to. It's like I want to impress him or make him proud or something. But at the same time, I do want to show him exactly how bad it is so we (he) can fix it. Sometimes, I wonder if he can read my mind. I mean he can give me more (or less) electricity - haha. But in reality, he probably really knows all the questions to ask to get the answers he needs because he point-blank just asked if I was using the walker a lot. I told him I was. After doing all the neuro exams (you know, "tap your fingers"...) he wanted to see me walk. This is my least favorite part of the appointment but the one that tells him the most. I got up and didn't take my cane. He asked if I needed it and I said I wanted him to see me walk without it. He said, "This is a no-fall clinic. We're at a 100% with no one falling here, so you're not allowed to fall." He made me laugh! He watched me take a few steps and then he ended the walking portion of the exam. ;) He could tell I was/am really struggling. When he asked if I had changed any of the settings in the deep brain stimulation device, I told him I had slept since then and really couldn't remember. He checked and reminded me that I did switch from Group D back to my favorite, Group A after only a month of being on Group D. But after that switch, I hadn't made any other adjustments. He asked why I switched, and I told him that I really couldn't remember but it must have been because I was having a harder time on it. I told him I was tired of "playing" with the settings and he said he completely understood. He asked if I had ever tried Botox. I told him I had, but it had been years (way before seeing him). The very first neurologist that I ever saw when I first started having symptoms gave me Botox, but it never worked on me. Come to find out, I had built up an immunity to it. I only found this out after that first neurologist tested my blood for it. Years later, when I went to the Mayo Clinic, they told me that it was probably that neurologist who caused me to build up an immunity by injecting the Botox too often. I think the standard (or at least it was back then) is to inject it every 3 months. Anyway, I learned from the Mayo Clinic that there are different strands of Botox that can be used. So, let's say that first neurologist injected me with strand A, the Mayo Clinic used strand B. Anyway, back to current day: Dr. T. said that he'd like to try it (again) on me. He said he could inject it into a couple of different places (my foot, my hamstring) because they were all extremely tight, but that he would probably just do the foot first. The downside to having Botox is that it will make everything loose (which is the point), but it may make walking harder for me - we just have to see. If it's the curling of my foot inward that is causing me to have difficulty walking, then Botox will help a lot, but if it's weakness, then it will do more harm than good. Again, it's all a test and see sort of experiment. The good (or bad) thing about Botox is it wears off in three months - so if it makes my walking worse, then in three months I'll be back to my normal. That could also be a bad thing, because if it does work, then it will only be for three months, and I'll have to keep getting Botox injections.  I have to get (better yet, Dr. T.'s office will do it for me) insurance pre-approval first, but we went ahead and set the appointment for April 13 (the soonest he had available). I asked if he was going to do it (give me the injection) and he said yes. ;) There's something in knowing a doctor you trust will do it instead of someone you've never met. I'm hoping between the deep brain stimulator, the medication I'm on and the Botox, that it'll all work together and get me back on my feet. 

For the most part, I try to stay upbeat about my situation, but don't get me wrong there are days or seasons when I'm just frustrated and sad about the whole situation. I told my yoga instructor on Friday that I don't really even remember anymore what life was like before dystonia, when I could run free! It's been 16 years since I first started having symptoms. There are times when I watch people walk in parking lots without a care in the world (walking-wise at least). They run in and out of stores without a second thought. That's not me. I strategically look for a parking spot that's near a shopping cart. If there aren't any, I've been known to just leave (although that was a long time ago! I usually will either find a spot or just end up taking my walker in now). It's a reminder to me to not take for granted what I do have. I can get around - thank Jesus! I can walk. I can move. It's just different. Even now, after 6 years (it's coming up on the anniversaries of my deep brain stimulation surgeries this month), I would completely have DBS surgery all over again. Yes, even with the problems I'm still experiencing today. You won't know if something works if you don't try that something. There are those out there that go skydiving or rock climbing to push themselves out of their comfort zones and then there's me - I try different medical procedures to keep pushing towards a "cure". As I told my neurologist on Thursday, "I want perfection. I know, I'll never get it, but I still want it." He (my neurologist) and I are a lot alike in the sense that he wants perfection too. He wants his patients to get better. He's in his patient's corner always and isn't afraid to try everything to get them well. That's got to be hard, because in a lot of the diseases he sees in his patients on a daily basis, there is no cure (yet!), but there's always hope, right? Yes, there's always, always hope.   

I told Dr. T. that I think this pandemic we're in has affected my walking negatively. I'm not walking as much as I was pre-pandemic. But hasn't this pandemic done a lot to all of us, just in different ways? So, I can't put full blame on that. In fact, I can't put blame on anything - it just is what it is! 

So, now you're as up to date as you can possibly be! Thanks for reading! 

As always - God's Got This!! 

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. 

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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!