Tune-In-Tuesday: December 29, 2020

I've resorted to walking with my walker again. My walking has been awful - like before deep brain stimulation surgery - awful. I am having problems walking even with the walker.  It's not just that, but my balance is off. But, there is hope on the horizon and for that I am very, very thankful. In the words of a friend of mine: "Be safe, it's temporary. At least you can confirm again how much of a difference the [deep brain stimulation] surgery made." Yes, yes I can confirm that now! It's easy to lose sight of progress made when I'm in the thick of things, but being reminded of how awful it can be brings immense thankfulness for the modern-day advances in medicine and medical procedures. I am once again reminded how grateful I am for deep brain stimulation surgery! 

Yesterday, I was telling the story to my future sister-in-law of my surgeries and experiences and my brother almost passed out. OK, not really but he was a little squeamish. ;) It's good to remember where you come from. Maybe this was (is) God's intention. He wanted (wants) me to remember from where I came to where I am. I get so bogged down in the day-to-day activities and weariness of dealing with walking issues that I forget how incredibly blessed I am. As I was recalling my experiences, I remembered that for at least a month after the surgery, I couldn't move my left arm and hand. That ability eventually came back - PRAISE THE LORD - and I can type and hold things and lift things and clasp things with that arm and hand. And with my walking - yes, I still have problems - particularly in wide open spaces and places where I feel like I can't grab ahold of something if need be (to steady myself) and walking on certain surfaces is hard (and on others extremely easy - weird, I know) - but I can walk unassisted for the most part. If I need a cane - to walk in parking lots or on certain surfaces - so be it. That was my original goal anyway - to be able to walk with just a cane. And - I have surpassed that with flying colors! It is so, so good to be reminded again of how faithful God was and is. Just typing this makes me smile with joy knowing once the battery is replaced, I will once again get to that place of walking freely for the most part and hopefully not be ashamed if I need the cane every once in awhile.

I've also been having a lot of pain where the battery for the deep brain stimulator is located (right under my collarbone on my left side). It's not painful all the time, but it's noticeable if I sleep on that shoulder or work-out. I've mentioned it both to my neurologist and my primary care doctor. They've both checked it out and neither could find anything wrong. Maybe the neurosurgeon can see if there is anything that's irritating it.   

Steven and Erin asked about my deep brain stimulation device. I showed them my remote and they noticed that the manufacture of my device is Medtronic. It turns out they have a friend who works for Medtronic. It's a small world!

So, if you see me out and about and I'm using my walker or cane, don't be alarmed. I'm using it for safety measures until I can get a "tune-up" and get a new battery. :)

God is so faithful and I can't help but be hopeful and excited about what's to come. So although 2020 has not been good for a lot of people and it's thrown me for a loop too, I am thankful. For in all things and in all circumstances, I can say - God's Got This!

Tune-In-Tuesday: December 22, 2020

What a week - in both good ways and bad. Nothing catastrophic, as I know others are dealing with much, much worse then I am this year. But, it has been a week. I've been under some stress (who hasn't this year, right?!) and so I thought that that was what was the major contributing factor to my walking poorly. I've fallen more times then I can count. I've reverted back to not only just using my cane but now my walker as well. Stress can't be doing all of that, can it? Maybe it can. It's definitely been a week. I've fallen numerous times, but I did not change the electricity and today marks two weeks since I went back to the level that seemed to work the best: Frequency A at 3.60 volts. My walking has only gotten worse.

But, this past week has not been entirely bad. Mom and I got to get away for one night to Dolly Parton's Dream More Resort and to Dollywood (for those non-Tennesseans, it's an amusement park). Everything was decked out for Christmas and it was stunning.  They took every precaution to keep everyone safe from COVID and it was a beautiful time. Though not planned, this trip kind of coincided with an anniversary of sorts for us. We celebrated surviving a car accident that we had 21 years ago on December 19, 1999. This trip was not planned because of that, but I love how God works little details like that in to our life story. 

Speaking of the anniversary of that car accident, about a month or so ago, there was another accident at the same spot we had ours. It looked like they had similar results. As I passed it, a car was being extracted from the ravine we went hurling down some 21 years earlier. Thankfully, for me, I don't remember much about the accident as I was knocked unconsciousness, but Mom remembers everything. Still, for whatever reason, when I passed this latest accident, I had flashbacks to our accident.

On Sunday, I fell walking into church. I didn't injure myself, but still. I fell. I was using my cane too! Later that day, Mom and I headed to Sevierville. Once we were at the Dream More Resort and in our room, something didn't sit right with me. I had major problems walking in places and while using my walker that I shouldn't be having problems walking in and with the walker. So, before we headed to Dollywood to see all the Christmas lights, I pulled out my deep brain stimulation remote and checked to see if everything was right with the electricity. And sometime between December 9 (when I last pulled the remote out to check) and December 20, this happened:

I know what this sign means and it's not good. It means: CALL THE DOCTOR. It means, the (internal) battery in my deep brain stimulation device has very low power and is about to die. It means I'll need surgery again to replace the battery. When I saw my neurologist back in June, he had warned me that although the stimulator was fine then, it was depleting the battery rapidly and that I would probably need a new one within a year to a year and half. Again, that was back in June - just 6 short months ago! But this is 2020 and anything goes, right?! Back to Sunday: at that very moment, there wasn't anything I could do as it was Sunday, so Mom and I headed to the park to see the Christmas lights. Boy, they did NOT disappoint. If you've never been to Dollywood, especially at Christmas time, you should make the trip and go. The lights were absolutely stunning! Unfortunately, the night wasn't all perfect though. (but is anything really?!) I fell. I fell WHILE USING MY WALKER. That takes talent, people! I ended up ripping my jeans and shedding blood. But, have no fear, I came prepared with bandages.I try never to go anywhere without bandages. It's just what I carry with me all the time, because I seem to need them all the time. The evening turned wonderful again as we made it completely through the park seeing all the lights and then back to the resort to roast marshmallows and make s'mores. We then had the most perfect view from the resort (while sitting in lounge chairs - just the two of us - no one else around) to watch the 7-minute fireworks show Dollywood put on. After viewing them, we toured (on our own) the hotel and then retreated to our room where we drank hot chocolate and ate (way too many) snacks we brought from home while watching TV. It was perfectly imperfect!!

First thing on Monday (while still at the resort), I called my neurologist and left a message with his nurse practitioner. She called me back to get a few more details and told me she would tell Dr. T. everything that was going on and would call me back. Then Mom and I headed to Dollywood for the day. It was a wonderful day at the park. We saw all the live shows we wanted to see, rode the train and the carousal and ate way too much food. Thanks to my use of the walker we got preferential treatment and were allowed to skip lines sometimes. So walking with it wasn't all bad. However, if I had the choice, I'd rather walk without it normally and stand in lines - ha!  The last show we saw at the park was the biggest surprise for me. I went to high school with Dolly Parton's niece, Jada. I knew she now performs at the park, but had never seen her and didn't know the show we were about to see was hers, but it was! We were seated on the second row and about halfway through the show, Jada spotted and recognized me (mask and all) in the audience. She waved and at the end waved again and made a motion for me to message her on Instagram. So, I did! We corresponded back and forth and I told her she made my day by recognizing me. I mean, it's been like forever since we've been in high school. All in all Mom and I had a fabulous, safe time and I'm so blessed to have gotten to go away with her - just the two of us - for a fun little adventure.

I heard back from my neurologist today. His nurse practitioner called and said what I knew (and expected) all along: the battery needs to be replaced. I didn't have to go in to see Dr. T. (my neurologist), but he had already spoken with the neurosurgeon and I have an appointment with the neurosurgeon on January 7 at 9 am to get the process going of getting a new battery.

I have to say, in a very weird way, I am very thankful it's the battery that needs to be replaced. It explains EVERYTHING. Why I can't stop falling. Why I'm having so many muscle spasms. Why I can't keep my balance. Why I feel dizzy every once in awhile. Why the stimulation and the medications are not working. So, for the time being, I'll be using my walker and cane. It's better then falling. And it's (hopefully!) temporary.

Well, that's the update for now. I hope everyone has a very blessed Christmas!

Always remember - God's Got This!

Tune-in-Tuesday: December 15, 2020

 It's been a rough week. Walking has not been good. If you can walk without any issues, never, ever take that for granted.

This past Wednesday, I went to the grocery store. I parked by a cart. (Thank you to whomever left it there. I may be one of the few or maybe the ONLY one who loves when people leave their cart near their car and don't return it to the cart receptacle!) But, even holding on to the cart for dear life, I had issues walking. My leg kept having spasms. My foot kept turning in or collapsing.  I tripped a few times, but didn't go down because I was hanging on to the cart. After the grocery store, I went to church. Ya'll I couldn't even walk into church. I tried. I used the cane and I tried, but I couldn't do it. No matter how many times I tried to lift my foot to walk, it just wouldn't cooperate with me. I tried calling my mom to see if she was already at church. She was, but she had her phone on vibrate and missed my call. I didn't try calling my dad since I knew he was preaching and was probably already preparing for that. I made it back to my car (seriously maybe only 5 steps from where I was in the parking lot) and just waited. Waited for what, I'm not exactly sure. Waited for my mom to see she had a missed call and call me back. Waited for someone else to arrive at church so that maybe I could get assistance from them. Waited to see if I just needed to drive back home and forget about going to church at all. In the end, a couple exited their car and was walking into church. I knew I had to be bold and humble at the same time and ask for assistance. So, I did and they came through for me in a big way. I was so unsteady (I had my cane with me!) that in the end the husband got on one side of me and the wife on the other and BOTH of them had to help me into church. I was embarrassed and yet eternally grateful at the same time. I made it without falling! My mom helped me up to Communion and yet that was a struggle as well. Getting back out to my car was a feat. Mom helped me again and yet, I had so many problems. We literally had to take one step at a time. She saw what a struggle it was for me. I haven't had this much trouble walking in a long time (which I'm so thankful for). We finally made it to my car and I was exhausted. All my brain power and muscle strength was put into that feat - that of walking from the church to my car. Again, if you have no issues walking, don't take it for granted!!! Mom had asked if I was going to call the doctor. I told her no. There wasn't (isn't) anything he can do necessarily other then adjust the amount of electricity in my deep brain stimulation system and that's what I was doing on my own. I did, however, check my DBS system to make sure it was still working. And it was (is) - thank goodness.  

Thankfully, I didn't have to go anywhere after I got home from church on Wednesday night. I've never been so thankful to get to work from home as I was then! Thursday, walking wasn't much better. I literally drove my car to the end of my driveway to pick up the mail because walking just that much was an issue. I decided by Thursday night that if my walking wasn't drastically better by Friday, I'd adjust the deep brain stimulation electricity again. 

Friday rolled around and I was still in a horrible state in regard to walking. I prayed about it and decided instead of waiting, I needed to adjust the electricity right then . I was also thinking forward to Sunday when I'd have to walk into church again. ;) So I adjusted the electricity and took it down to 3.50 volts on Frequency A. And then, I waited. But, as it turned out, I did not wait long. I actually fell, Friday night. I was carrying a plate of food and lost my balance and salad and chicken and rice and salad dressing (especially the salad dressing!) went EVERYWHERE. And I do mean everywhere. I'll admit, I was MAD. I just sat there on the floor for a minute or two and let myself be mad. Why can't I walk normal? Why all of the sudden am I having this much trouble walking? Why me? Yes, I went there. For two minutes, I allowed myself to go there. I know it could be much, much worse. I do. I am so thankful that I am not dying of cancer or ALS or some other catastrophic illness. I am so thankful and yet in that moment, I was mad. If you can walk without really thinking about it, stop right now and thank the Lord. Sometimes you don't know what you've got till it's gone. I miss those days of walking without thinking about it! So, I allowed myself a minute or two (or three) to just sit there in salad dressing and chicken and a broken plate and be mad and sad and frustrated and then I picked myself up and began the long process of picking up the mess I made. I mean it was everywhere. I took me sweeping and vacuuming and mopping to get it all up. Ugh. And thank goodness for washing machines and Shout! products. But, I wasn't hurt, minus a few bruises. It's in moments like these that I'm thankful for a cushy butt to land on - ha! I decided that 3.50 volts was way too low and quickly adjusted my DBS system back to 3.60 volts. I re-made my dinner and decided the rest of the night was to be spent on the couch moving as little as possible. 

Saturday, I allowed myself to sleep in. Like, really, really sleep in. I, of course, woke up at my usual time (without an alarm clock), but eventually I went back to sleep. When I finally did get out of bed, I ran some essential errands. I only went to places I knew would have carts that I could hang on to. I thought I was doing better and maybe I was, but after my two-store shopping "spree", I was done. Done walking. My legs were like jelly and muscle spams reigned. I didn't fall (thank you, Jesus), but the rest of the night was again spent on the couch and trying not to walk as much as possible.

Sunday I needed help getting into and out of church - more than just my cane could give me. A friend helped me in and my brother helped me out. I wanted so badly to go to the children's Christmas program that night, but my legs said otherwise. And let's just be honest, the rest of my body did too. It takes so much energy to walk. Have you ever thought about that? I haven't really, but it does - at least in my case. It takes mental energy, physical energy - it takes all the energy. So, I allowed my body to once again just rest. I got in bed early and watched old episodes of a show called "Three Rivers" (and yes, if you know me at all...."Three Rivers" was a medical show - ha.).

I have NO idea why I'm having so many problems right now, but I am determined to learn something from it. I'm a HUGE believer that everything happens for a reason and that God works through EVERYTHING. So, this is not happening for no reason at all. I wish I was walking better NOW, but patience has never been my virtue. Maybe God's re-visiting that trait in me. Maybe He's preparing me to be able to help someone else. Maybe He's simply trying to get my attention to bring me closer to Him. Whatever it is, He's using a megaphone to get my attention! 

Maybe He's just once again reminding me that God's Got This!

Tune-in-Tuesday: December 8, 2020

 Between last Thursday and today, I've somehow forgotten how to walk. I'm only slightly exaggerating when I say that. Wow, I mean, talk about something taking effect in 2 weeks. What happened? After updating on Thursday, I fell AGAIN. I really wasn't even walking either. I turned around, lost my balance and fell. My equilibrium is completely off. Walking - even with a cane - is not really happening except with great effort and prayer. I had someone help me walk into and out of church on Sunday and I was using my cane too! Walking up to and through Communion at church was difficult. I wanted so badly to adjust the electricity yesterday (Monday), but I thought "give it one more day - that will be exactly two weeks." Walking was so bad, that I literally got in my car and drove to end of my driveway just to get the mail. I didn't want to risk walking even that short of a distance. I HAD to go to Walgreens last night to pick something up. There was a cart literally just steps away from where I parked and I couldn't even make it that short of distance. I got stuck and almost frozen if you will. I couldn't bend my knee. I couldn't lift my leg - I was stuck. Thankfully, God sent an angel in the form of a man who was so very kind.  He asked, "Do you need that cart?" When I answered, "Yes.", he said, "All you really had to do was say, "Dude, I need that cart, grab it for me!" I mean, he was so, so sweet and just diffused the situation with laughter and comedy. He didn't dwell on any disability I had. Even after I got the cart, my legs were like jelly and I ended up tripping and "falling" (I was holding on to the cart, so it was more like tripping). As I used the cart more, I got steadier, but still not steady enough. This morning I was so incredibly happy to be able to take the electricity back down. Yes, I could have done it (maybe should have done it) sooner, but I really wanted to give the electricity two full weeks to take effect. And I made it (barely - but I made it) two full weeks and it took effect. Boy, did it take effect. Not the way I wanted it too, but it took effect.  And that's a glimpse into my life when I'm experimenting with how much electricity I give myself. It's sometimes embarrassing, sometimes heartbreaking, sometimes frustrating, sometimes amazing, sometimes nerve-wracking, some times miraculous, sometimes panic-inducing, but always an adventure. I took the electricity back down to 3.60 volts on Frequency A. Sometimes, I wish there was a 3.65 or a 3.55 - something like that. It seems at times 3.50 or 3.60 is too little, but 3.70 is too much. But, what I am going to do? It is what it is and I'll  make the best of it. Again, this is as much art as it is science. The brain is a beautiful, wonderful, mystifying part of the body that God has so intricately designed. When I think about it, I can't help be amazed by it. How can you NOT believe in God when you think about the human body and how all parts of it work together (or don't work because something's not quite right)? So that's a quick update. Hopefully, I'll go back to walking at least OK again soon. I'm done experimenting for awhile - ha! God's Got This!  

Tune-In-Tuesday (but on a Thursday): December 3, 2020

 It's been over a week since I "played" with the electricity in my deep brain stimulation device and there have been times that I've wanted to "play" more, but I didn't. It hasn't been two weeks yet. :) So, I'm patiently (or maybe not-so-patiently) waiting until next week to adjust anything (if that's what I choose to do). I've fallen twice since switching it up. The first time was this past Monday night. I was SO tired and just tripped over my own two feet and the rug and fell. I fell on carpet so there was no harm, no fowl. The second time I fell was last night. That fall was kind of ironic. For awhile now, my dad has suggested that I use my cane in places where I feel I might fall (parking lots for instance). I have been a staunch "no-I'm going to use my own two feet" supporter. I can be stubborn like that. But, this past week, I changed my mind. I can't pinpoint the exact moment and there was no big event, but a light bulb switched on in head and I didn't resist that thought anymore. Maybe, I'm growing up. :) Maybe I'm just getting more comfortable in my skin. Or maybe my re-watching of "House M.D." is rubbing off on me. I mean, Hugh Laurie did make walking with a cane sexy - haha!

Last night as I arrived at church for an Advent service, I decided I would use the cane. Why it took me SO LONG to accept help by using the cane, I'll never know, but it was AWESOME! I never thought that I would use that word with regard to using a cane, but here I am. I was able to walk in the parking lot!!!! I was overjoyed. I think I was a little too overjoyed - possibly even cocky, coming out of church. I was "this-close" to my car and I fell. I was so sure of myself that I got "sloppy" walking and wasn't paying attention and I fell. Again, no harm, no fowl except maybe my ego. ;) Now, do you see why I said this fall was ironic? Using the cane was supposed to help me from falling and I fell anyway. I do truly believe the reason I fell was I got too relaxed and let my guard down too much. 

I don't want to become dependent on the cane, so I'll only use it when I really feel like I have to. It's a prop to help me walk just as much as the medication I take is. So, if you see me with a cane, don't be alarmed. It's just helping me along in this journey. Some days are great and some days I need a little extra help. 

Thanks for reading this entry and always remember - God's Got This!

Tune-In-Tuesday: November 24, 2020

I'm finally posting a Tune-In-Tuesday blog post on a Tuesday - wonders never cease! I thought it was time for another update, especially since I changed the amount of electricity in my deep brain stimulation device. It's not that I've been falling all over the place (I haven't), but rather I'm not walking "correctly". I walk on the outside of my foot and my foot isn't laying flat on the floor - all signs I need to give myself more electricity. This is tricky though. Since I haven't been falling and I CAN make it from Point A to Point B (however slow or awkward it may look to others), do I really want to mess with the electricity? Especially since the holidays are coming up? Well, I guess my answer was (is) yes. On Saturday, (November 21) I upped the electricity from 3.60 volts on Frequency A to 3.70 volts on Frequency A. My left hand went a little nuts, but that was to be expected and it's calmed down a little since Saturday. So now, I wait.

I find it a little ironic. It takes about 2 weeks to see any real effects from going up or down on electricity. I really never thought twice about that, but then 2020 happened. COVID quarantine is 2 weeks. That got me thinking. Does it take 2 weeks for a lot of medical-related things to take place, to heal, to work, for medication to kick in....? Probably not. I'm just thinking out loud now. :) Like I said, it's just a little ironic to me.

I went to the dentist last week. They have been wanting to do a digital panoramic X-ray on me for  about four years now (I haven't had one since before my DBS surgery), but won't do it until I ask Dr. T. (my neurologist) if it's OK. Because of the battery for DBS and then of course the actual electricity, they want to be super diligent in making sure it's 100% OK to get it done. They've done other X-rays but not the panoramic. But, for four years, twice a year they have asked me this and for four years, I keep forgetting to ask my neurologist! That's super embarrassing to admit. The dentist has always been the one doctor, I don't actually mind going to. ;) So, finally TODAY was the day, I remembered to call and ask. That was partly due to the fact that I just had my dentist appointment and partly due to the fact that I got a letter in the mail from my neurologist letting me know the practice was moving to a new location - so I had the letter right on the table in front of me to remind me. (Side note: I'm SO THANKFUL that the letter was just to inform me of a new (but still local) location and not that my doctor was leaving the practice or moving out of town!) I called and left a message and Dr. T.'s nurse called me back within an hour and half. Dr. T said it's fine to have it done, just no MRI's. So I called my dentist and they were able to get me in today to do it! It did make me feel so much better to hear them say that this X-ray is only needed every 5 years (so they were being pro-active in asking me for 4 years if I could have it done - ha!), so I was well within that time period. I'm not sure why it took me four years to ask the neurologist, but now we know! I think it took me longer to get to the dentist and back home, then it did to take the actual X-ray, but it's done and I can mark another thing off of my "To-Do" list.

I've noticed that my left knee makes cracking noises when I extend it. It's been doing this for awhile, but just recently I've wondered if it has anything to do with DBS, electricity and/or how I walk. For whatever reason (it's literally just the way I instinctively walk when I'm having major issues), I don't bend my knee when I feel like I'm going to fall or when I get nervous walking. It's automatic. I don't have to think about it - my knee just won't bend. I guess it's a coping mechanism? My knee doesn't hurt when I hear it crack, but it definitely makes a horrible cracking noise. I hear it a lot while doing yoga or going up stairs. Just hearing it crack makes me wince. It's not painful, but that noise is horrible!! Weird, right?! I guess it could just be old age too! ;)

I'm definitely no medical professional, but in my head and in my heart, I want things to connect so badly. Like because of this, so and so happens and because of this, that's happening. I get SO frustrated when I can't logically connect things. And maybe this is why they call medicine "art" just as much as they call it "science". And maybe this is why I'm not a doctor (well, that and the fact that I'm horrible at math and science). I don't think I could handle on a daily basis why "A" and "B" don't automatically equal "C". I've always thought of myself more "artsy" than "analytical", however the older I get, the more I realize, I do like a lot of "analytical"! I like checking things off of lists. I like researching, but I like answers - clear, concise, black and white answers. I like when every piece of the puzzle fits together perfectly. And that's just not life - is it?! :) I like order, and stability and all things Type-A, but again, life isn't that! If you never fall, you're never going to experience the high of getting back up, dusting yourself off and overcoming. All this to say, I knew where I was electricity-wise, was not where I was supposed to be. I knew I needed more. So that's where I'm at. Hopefully, I can wait it out for the next two weeks (not jump the gun and either go higher or lower) and if I need more electricity after that, I'll adjust again. 

This whole experience/disease is an art form, whether I like it or not. Maybe I need more electricity at times. Maybe I need less electricity at other times. It's a dance, right? I've got to give in (not give up) and just let this "adventure" take me where it's going to take me. I think my resisting at times makes it worse. If I have a bad day/week/month, I have a bad day/week/month. That shouldn't define anything. It just is what it is. It'll make the good day/week/month that much sweeter! 

Some of you may know that Michael J. Fox is my favorite actor. I've loved him since his "Family Ties" days. One of my most favorite movies is "Doc Hollywood" (You thought I was going to say "Back to the Future", didn't you?!). He became even more of a favorite of mine after his Parkinson's diagnosis and after I read his book "Lucky Man". We have some things in common. We were both diagnosed (in my case - FINALLY) when we were 29 years old. We've both had deep brain stimulation surgery. We both take (some of) the same medication. We both have a neurological condition. Though, I do not have Parkinson's (praise Jesus!), I do relate to some of the things he's gone (going) through. It's refreshing to hear that others struggle. Is that mean of me to say? I mean, I KNOW others struggle, but to actually hear them talk about their struggles encourages me in ways you don't understand unless you experience them yourself. To hear that it's not "automatic" for him to walk or to get going - I understand that on a deep level. It also encourages me because it gently reminds me that I've got it made in comparison. Yes, I struggle every day, but nowhere near the struggle people with Parkinson's deal with. I see it with those in the waiting room of my neurologist. There are people struggling so much more than I am. It gives me new perspective. It makes me count my blessings even more.

We are only a couple of days away from Thanksgiving and 2020 has been a hard year on ALL of us. But God is good. "Rejoice always, pray continually, give thanks in ALL circumstances; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18 NIV

And always remember...

God's Got This!

Tune-In-Tuesday (But on a Saturday): October 17, 2020

Again, it's been a hot minute since I updated this blog. A couple of my friends have asked when I'll start blogging again. (And, by a couple of friends, I do mean 2 people - ha!) :) I've given the same excuse to those who have asked and that's been: "I'm working from home now and for some reason I just don't want to stay on the computer any longer then I have to these days." Which is a lame excuse, I know, because when I was blogging weekly, I worked on a computer all day and then came home and jumped right back on the computer and blogged. So, all that to say, I'm back (for today)! Here's a little (or long - I don't know which one yet) update on what's been happening in my life since the last time I updated.

June 10 was my last update. Since then, I moved into a new decade of life. June 12 saw me turning 40. Yes, 40. If we're blessed enough, it happens to us all - we get old. I think I've felt like I was 40 since I was 25 (when all this dystonia and walking problems began), but now I'm officially 40. I'm not sure how that happened so quickly. My dad was 40 when we moved to Tennessee and now, now I'm 40. Sheesh. I love, love, love birthdays and my 40th was amazing (pandemic and all). My family made sure I was celebrated well. 

Since June 10, when I saw my neurologist, I've gone up and down in the amount of electricity I've "given" myself. (I never know how to really write or articulate that sentence. It almost sounds like I'm electricuting myself or something.) Here's a little timeline (thanks to me taking a picture every time I adjusted the electricity): 

June 10: Dr. T. raised the electricity to 3.30 volts on Frequency A. 

June 27: I rasied it to 3.40 volts continuing on Frequency A. 

And then, I waited. It wasn't that walking was necessarily great. It was more that I didn't want to mess with anything. A.K.A: Laziness on my part. It's not (as) fun anymore to play with the electricity, so I just let it be for awhile. 

August 11: I adjusted the levels again and went up to 3.50 volts on Frequency A. 

September 7: I raised it again to 3.60 volts on Frequency A. 

September 9: I decreased the electricity back down to 3.50 volts on Frequency A because I felt like I had too much electricity. 

September 15: I was still having major problems (I was consistently falling), so I took myself down to 3.40 volts on Frequency A. 

September 28: I decided to go full-throttle and raise the electricity to 3.70 volts on Frequency A. Instantly (and I do mean instantly!), my hand freaked out and curled under. That is a major sign that I went too high, too fast, so I adjusted the electricity and landed on 3.50 volts on Frequency A. 

October 9: I raised it 3.60 volts on Frequency A 

October 17 (today): I'm still holding steady (or maybe not-so-steady) at 3.60 volts of Frequency A 

What does it feel like to have too much or too little electricity? I'll try to explain! 

Too much electricity: My muscles tighten up, my leg gets really stiff, my hand curls under or spasms, I fall a lot. Fun fact: sometimes when I fall it actually "helps" my muscles loosen up. I don't think that's a scientific fact at all, so don't test it, but sometimes it does actually help me to fall. Another fun fact: my left arm and hand were effected by the deep brain stimulation. I actually lost all use of them for several weeks after the surgery. I could feel them, I just couldn't move them. I eventually got all movement back in them once the swelling from the surgery went away. But, they have now become my meter on how to tell if I have too much or too little electricity. 

Too little electricity: My muscles are too loose (floppy? I don't know how to accurately describe this - they feel like jello). My leg spasms. My muscles twitch. I feel like I don't have any control over my leg and foot. I fall a lot. My hand and arm are normal. ;) 

 A friend told me on Wednesday night that he thought I was walking better. Maybe I am, maybe I'm not. Some days are definitely better then others. Shoes also effect the way I walk. The more supportive - the better I walk. Surfaces effect the way I walk. I walk almost perfectly on sand. Thick carpet, thick grass - excellent places for me to walk. Hard surfaces, concrete, hardwood - not so great for me to walk on. 

Anyway, since I've written a book here, but simultaneously caught us all up on my ups and downs with electricity in my brain, I'll close for now. I will update more frequently, I promise. It might not be weekly, but it will definitely be more than every 4 months. 

 Always remember, God's Got This!

Tune-In Tuesday (but on a Wednesday): June 10, 2020

It's been a hot minute since I've updated this blog. My last post was on March 29 - oops! That was partly on purpose and partly me just being lazy. I kind of felt like a broken record and felt that people were getting tired of reading the same thing - ha. I was getting tired of my own blog, so I can only imagine how you, the reader, was feeling!

Today, I have an update. I had my "routine" neurology appointment yesterday (June 9). I started to update this blog last night, but got bored. My attention span was that of a gnat and other things intrigued me more then updating this blog. And by other things, I mean TV and not being on my computer (just being honest).

I was supposed to have this appointment back in January but it had to be rescheduled as my doctor was out of the office. This was the first available appointment. What can I say, he's a popular guy.

At the beginning of quarantine (BTW...still haven't learned how to spell that correctly!) and work from home (which started for me on March 13) I fell a couple of times, but eventually things started to get better. I think that's partly because I only have to walk steps from my bed to my office, so there's hardly any room to fall (but, in true Stephanie fashion, if there's a way, I'll do it!). I did fall last month while holding on to my brother. It takes talent to do that people. I'm not including this to embarrass my brother for not catching me (in his defense we were walking along just fine and then I wasn't! He didn't have time!); I'm including it because ya'll, I'm THAT talented!!! I wasn't/ am not walking that great but it hasn't really been a problem because I haven't had to walk much!

So yesterday, I had my appointment. It was a little weird just because of COVID-19. I had to wear a mask (duh!). I got my temperature taken as soon as I stepped foot in the door. It must have been normal as they let me all the way in. :) At the check-in window, I paid my co-pay and had to sign the receipt. I used a pen and after I was done they told me to put it in a basket different from where I got it, so they could sanitize it later. There were signs on a lot of the chairs saying not to sit there to keep a social distance from one another. Thankfully, I had an 8am appointment and was the only one in the waiting room. I thought that, since it's my birthday in a few days, as a gift, I could skip the weigh-in - no such luck! ;) When I saw Dr. T. he was wearing a mask, there was no shaking hands and he immediately sanitized his hands. It was great to see him. The first thing out of his mouth (after saying hi) was, "My wife met one of your family members, but I can't remember who right now." It was my sister-in-law. She had told me she met my doctor's wife. It truly is a small world. Anyway, the appointment went well overall. The only "bad" news was that he said I may have to have the battery replaced in my deep brain stimulation system in about a year to a year and half. While that may seem like it's far in the future, it's not. If I have to have it replaced within that timeline that's 2 battery replacements within 5-6 years. That means I'm going to have to have surgery every 5-6 years for the rest of my life. But - I'm not going to worry about that now. There is an option of a rechargeable battery and it seems like things are being invented every year. So we'll see. Dr. T. had a hard time at first even getting my device to connect to his system until he realized his system wasn't on. For a minute I thought, maybe my device needs to be replaced now if he's not even getting it to connect. Whew - I was glad to know that wasn't the case. He asked if I checked it (the battery) regularly. I admitted that I don't - only when I change the electricity. He suggested that I start checking it every couple of weeks or so. He watched me walk. I dislike this part of the appointment the most. I know it's why I'm there, but I dislike people watching me walk. He noticed that I was struggling. I know that I'm struggling, but the novelty of the the DBS system has worn off and I don't like "experimenting" with the settings anymore, so I tend to leave the electricity where it's at. But, he said I need to start "playing" with it again. There are many settings I can put it on. He asked me if I wanted him to increase the electricity. I told him since he was already checking it, yes! It would save me from having to do it later. Is that not the epitome of laziness on my part?! He increased the electricity by 2 volts, so now I'm at 3.30.

Dr. T. asked if I was having any pain. I'm so glad he asked because that was one of the things I was going to bring up. I've been having a lot of tenderness and discomfort (not necessarily pain) around where my battery is located. I had mentioned this to my primary care physician back in September and we thought it may be because I was sleeping on it. His medical advice was to stop sleeping on it. ;) Dr. T. examined the site and it's not infected or swollen. He couldn't feel any tightness in the wires. I told him that I first noticed the pain when I was doing yoga and just figured maybe I had pulled a muscle. He agreed with my primary care physician and said to maybe not exercise so hard and avoid yoga poses that aggravate it. So, I'm glad to hear it's nothing I need to worry about.

Last night I could tell the electricity was turned up. I had spasms in my foot. That could have been from exercising and having yoga in the same day, but I'm pretty sure it's from having the electricity turned up. I just have to power through. On the Frequency that I'm on now (A) I have 8 more volts I can go up on and 10 volts I can go down on. So we'll see how the next few weeks go. It's back to the drawing board so to speak. I know I'm not where I want to be (walking-wise), but when I think of where I've come to where I am now, I can't help but smile.

I know that in ALL things, God's Got This!

Tune-in-Tuesday (but on a Sunday): March 29, 2020

Hi ya'll! How's everyone doing? Going stir-crazy yet? How's self quarantining going? I've noticed that we all want what we don't have. What do I mean by that? Well those of with kids want them to go back to school. Those of us with spouses want 5 minutes alone, while those of us with no children and no spouses want all that chaos - haha! Even in this quarantine (and I'm still wanting to spell it quarentine!), God is still good!

I'm sorry I didn't update last Tuesday, but truth be told, I didn't want to sit at the computer anymore. ;) I am EXTREMELY BLESSED to have a job where I can work from home in these circumstances, but it's different. Ya'll know if you're doing the same thing. I'm also one of those people who want to "play by the rules" and somehow working from home makes me even more intent on staying at the computer ALL DAY to make sure my bosses and co-workers know I'm working and not slacking off - haha. HOWEVER, I've been on several Zoom meetings this past week with my boss and co-workers and the higher-ups at the company and they are ALL saying to take breaks - get away from the computer - breath. So, I'm trying to take their advice! Anyway, all that to describe why I didn't update. ;)

If you read my last blog post, you know I was having trouble and was debating on whether to take the electricity in my deep brain stimulation device down some. Well, I waited exactly two weeks (Yay! - go me. I WAITED!!!), but I did end up taking it down last Thursday (March 26 for my record keeping!). I took it back down to 3.00 volts (from 3.20) on Frequency A and now, I'm wondering if it's too low. Maybe I should land on 3.10. But for the time being it's at 3.20.

So, as stated above, I've been working from home.

Some of the "pros" of working from home:

- I can roll out of bed at 8:28am and be at work at 8:30am.
- I don't have to shower or put make-up or "real" clothes on (unless I know I have a Zoom meeting - ha!)
- I'm not interrupted.

Some of the "cons" of working from home:

- I'm not interrupted. I MISS MY CO-WORKERS SO BAD!!!!!!!!!!!!!
- I can't bounce ideas off my co-workers (well I can through instant messaging and e-mail, but it's not the same).
- I miss human contact.

Ya'll I've ALWAYS thought of myself as an introvert. And, I am - HOWEVER (more than ever), I miss my family and my friends. I miss human contact. I miss hugs. I miss get annoyed at people. I just miss people. We were not born to be isolated. We need each other. I am SO THANKFUL that we live in a time where there are Zoom meetings, Facebook, FaceTime, IM, text messaging, phone calls, e-mails, Instagram and everything else, because if we didn't live in this time, I think I might go crazy. Thank you, thank you to everyone who posts on Facebook and Instagram. To those that reach out in texts and phone calls. One of my absolute favorite things right now is getting to FaceTime with my nieces. It gives me life. My dad was testing out Zoom the other day and Zoomed me to test it. I LOVED IT!!! So, while I may be an introvert - I need people!! This quarantine is teaching me to be more social (after all this over with), to never take human contact for granted and to spend as much time with my family and friends as possible.

In this time of doubt and worry and panic and sadness, I've asked Jesus to show me how to be like Him every day. I'm being intentional about it. I want to represent Jesus in everything I do. So many people are scared and panicked and I want to bring just a little bit of calm to their world. Don't get me wrong. I have my moments of panic and hypochondria, but more often than not in this time, I've been calm. As many of you know (or don't know, that's fine too!), I suffer from panic attacks. I have since I was 10 or 11. It's a physiological (I hope I'm using the right word there) condition - meaning it's physical. I don't bring them on myself. I don't say, "Oh, let's have a panic attack today." It just happens. Yes, I have triggers and yes, I CAN get myself so worked up that I cause myself to have one, but for the most part it's physical. Anyway, since the coronavirus has hit, I've felt at peace. Is that the not the weirdest thing?! I saw something on Facebook and IMMEDIATELY related to it. I think it was meant to be funny, but ya'll it's me!! It said:

"I've noticed that people with anxiety disorders seem to be much calmer than the general population concerning the Coronavirus. Guess all these years of dealing with imaginary worst-case scenarios has actually made us more capable of dealing with real threats when they come - silver lining."

Again, I'm not saying I'm completely panic free. In fact, today, I HAD to pick up a prescription and also buy groceries. So now my hypochondria is in full force. Did I expose myself to the virus? Should I just have survived off of oatmeal? BUT, I also know that God's got this. He knows are needs. He was there yesterday, He's here today and He'll be here tomorrow.

I was talking with a co-worker (over instant message) and I told her that I was kind of scared that when we were allowed to be in crowds of people again that I would have a panic attack. She said that she hoped it wouldn't be like that. Since telling her that, God's allowed me to completely change my mind. I truly believe that when we are able to be together again, that I will be just fine. In fact, maybe I won't ever have another panic attack. My God is a God of Miracles - so it can happen!!!!!!!!

On a lighter note, I broke the "flusher" (not sure that's a word) on my toilet this morning. How does that even happen? I went to flush the toilet and the "flusher" fell off! Thankfully, we have a plumber in our church. I called him and he was able to fix it ASAP. I kind of felt guilty for calling him, you know, with the pandemic and stuff. I could of used my other bathroom, but I am so very thankful that it is fixed. It's one less thing to worry about.

Also during this pandemic, I have missed with all my heart my church family, however I have completely enjoyed listing to the worship services online. Only God really knows my heart and when I'm able to listen - just one on one (me and whomever is speaking), I've been able to really experience Jesus and his saving love for me. There's no distractions. It's just me and Jesus. I've been able to dig deeper into my faith. But, again, I miss my church family so, so very much and can't wait to see their faces, hug their necks and have human contact with them again! It pains me more than anything that we may not be able to worship together in person Holy Week and Easter, but God is still God and we will still celebrate the resurrection of our RISEN LORD.

Ya'll if you're worried, anxious, scared, panicked - please reach out to someone. Reach out to me. God is so good. I KNOW without a shadow of a doubt -

GOD'S GOT THIS!!!!

Tune-In-Tuesday (but on a Wednesday): March 18, 2020

First, I'm sorry I didn't blog yesterday. I worked all day (which is not unlike every Tuesday (or Monday, Wednesday, Thursday or Friday) - ha!) but the difference was that I worked from home and as silly as this sounds, my laptop was in the same place I usually blog from and I just didn't feel like sitting down anymore and writing - so - I'm blogging today. Why I feel like ya'll have to know that information, I don't know - ha!

Anyway, how are all ya'll doing being quarantined? Or are you even quarantined? Maybe I have to be quarantined so that I learn to spell quarantine. Literally for all 4 times that I typed quarantined (now 5) I've spelled it "quarentine". That's embarrassing, but true. 😉

I did do a live Facebook video yesterday (maybe that made up for not writing a blog!). It was fun, however I'm sure those that tuned in got bored because I didn't know what to talk about. Imagine that - me - who loves to write and spill my guts - couldn't come up with stuff to talk about. Haha. I'm not going to lie though, it was fun. Maybe I'll do it again. Send me topics to talk on though. 😉

I've always thought of myself as an introvert. I am an introvert - no doubt about it. However, in times like these, I'm not so introverted. I need human contact. I go stir-crazy. My personality is somewhat like this: If you tell me I can't do something, I try to prove you wrong. It's like a challenge for me. I don't even know what personality that would be defined as. But what I'm saying is that now that I know I'm not supposed to go anywhere, I have to go to all the places!! What gives?! And just to be clear - I'm not quarantined (again, I misspelled it and had to correct it!) because I have the Coronavirus. I'm quarantined because my work has told all of us that we are to work from home through (at least) March 27. And then we're hearing on TV to not go out unless necessary, so anyway - that's why I'm quarantined. I really, really think quarantined should be spelled quarentined. What is up with me and not being able to spell that word?!?! I might take a drive later to Cades Cove or something, (maybe just my neighborhood!) just to get out of the house, but still be quarantined (to my car). We're all in this together, just quarantined from each other. How backward is that?!

As for dystonia stuff: it's been a so-so week. After updating last week that I hadn't fallen any, I fell on Wednesday. Yep, the day after I updated. Right there in church. I think only one person saw me (I HOPE at least only one person saw me), but I of course bloodied my knee. Interestingly enough, I was wearing pantyhose (don't judge, I wear them to cover up my flour white legs and also to keep warm in the office. It's crazy, but just that little sheath blocks out the cold in the office!) and for the first time EVER, I didn't get a hole or rip in them at all. How does that even happen?!! They were only bloody. That explains why I couldn't keep Band-Aids on my leg though - haha. Yes, I put them over the pantyhose and they wouldn't stick. I'll admit, I was preoccupied and worried about the band-aids coming off during church. They did come off several times and I reapplied them. We had Communion and I was so worried they would come off as I walked up to Communion or when I had to kneel. I didn't want to get the kneeling cushions bloody! It's kind of funny (not really) how Satan distracts us. I prayed though and guess what?! They didn't fall off and I got nothing bloody!! However, after church was over, I noticed that at some point after Communion, they had fallen off. I looked everywhere in the pew for them and couldn't find them. I gave up. It wasn't until just a couple of days ago that I found them. Stuck to the bottom of the shoes I was wearing that night - phew! No one had to find my bloody band-aids and dispose of them. Thank you, Jesus.

I had a bloody nose at the beginning of the month. I don't think that has to do with anything related to dystonia, but I will say, I've never had more bloody noses then I do now after brain surgery. Is that a thing? Probably not and I'm probably going into hypochondria by overthinking things like that. On a side note: how was I able to spell hypochondria correctly the very first time and I still can't spell quarantine correctly after like 13 times?!

So yeah, needless to say, I've been having issues. I finally decided to see what level of electricity I was on (because, I literally forgot and don't remember the last time I fooled with the electricity.) I thought I was on 3.2 volts, but good thing I checked because I was actually on only 3.0 volts. So last Thursday (March 12 - for my record keeping 😉) I took the electricity up to 3.2. And today, I'm thinking about taking it back down again to 3.0. I haven't yet, but I'm contemplating it. Walking hasn't gotten better and even though I haven't given it two weeks (which is the length my neurologist said to give any level to see if it works, unless it's just too much to bear), I'm thinking of going back down. My foot doesn't lay flat on the floor (acting like it's got too much electricity). So...we'll see. It's a guessing game with this condition and with the electricity. I'm glad I have options, but sometimes it's frustrating.

Maybe God's quarantining me so I'll start writing a book?! People keep telling me I should. Maybe I will. Not that I can write a whole book in a week or even a month. But maybe I'll start on it. I've kind of written a book here in just this blog post, haven't I?! When I want to write, the words just flow. When I'm forced to write, they come slower. I guess that's what it's like for everyone, right? Or am I the only one that feels this way?

OK, I'll close now. I hope everyone stays well and keeps their sanity in this insane environment we are currently living in. And as always, remember: GOD'S GOT THIS!!!

Tune-In-Tuesday: March 10, 2020

You’d think that I hate writing by my reluctance to update this blog tonight (and last week). I’ll be honest, it’s felt like a chore. I don’t know why that is. I didn’t update last Tuesday because I had just updated the Saturday before, but for the past few weeks, every time Tuesday’s rolled around, I’ve not felt led to write. Sometimes I feel like a broken record saying the same thing over and over, however I do love having a record of what’s been going on and when it happened. So tonight, I’m forcing myself to sit down and write an entry. After all, I really do love writing. In fact, last night I even had a dream that I had a book being published. 😊

Walking has been difficult these past few weeks. I haven’t fallen, but I haven’t been walking with ease either. I’ve been on the struggle bus. I think a lot of has to do with the weather. However, even though it’s been a struggle, I am grateful. I’m grateful that I can walk – no matter how slow or awkward. I’m grateful that I have a desk job. I’m grateful that I have a one-story house. I could go on. 😉 I know that this is just a season and it will pass. There will be better walking days ahead!

Thanks for reading this short, but (hopefully) sweet entry! Stay well, wash your hands and always remember: God’s Got This!

Tune-In-Tuesday (but on a Saturday): February 29, 2020

I didn't update the blog this past Tuesday somewhat because I had a million things going on and ran out of time and somewhat because I knew that February 29 this year fell on a Saturday and I'd have time to blog then. And yet, here it is at 10 pm on February 29 and I'm finally updating.😉 To catch you up, on February 23, 2020, I celebrated the 4th anniversary of my deep brain stimulation surgery. How did I celebrate? I tripped over the vacuum cord and bloodied my knee. I had just taken the band-aid off too. 😊 How appropriate! You think life’s going one way and then God shakes things up a little bit. How in the world has it been 4 years?! If you'd like to read what I wrote about that day 4 years ago, you can do so here: 2nd Surgery It was by far the most unique thing I've ever been through.

Happy Leap Day/Year! This is the first time since having it done that I can recognize/celebrate the anniversary of my last (of 3) surgeries for deep brain stimulation. I didn't have to have 3 surgeries because it was messed up or anything - it's just a 3 surgery process. February 29, 2016 I had the battery for the deep brain stimulation device implanted and all the wires from the device in my brain to the battery connected. The deep brain stimulation wouldn't be turned on until March 29, 2016, but the surgery part of the process was complete with this surgery. It was NOT lost on me that this final surgery was done on LEAP day. I WILL LEAP again!! In some ways it's very hard to believe it's been 4 years. It's not been the "instant" miracle I was praying for, but would I do it all over again? HECK YES!!!

I was out running errands this afternoon and I was WALKING. I was walking without a cane, without a walker, without assistance. While I still struggle, it's nowhere near the struggle I had 4 years ago. I can only say I am beyond blessed.

If you'd like to read what I wrote 4 years ago about the surgery, you can do so here: 3rd Surgery

I am a firm believer that God allows us to struggle so that we don't forget about Him. He has, is and will always be with me in this journey. Thank you, readers, for also following along on this journey with me.

Always remember: God's Got This!

Tune-In-Tuesday: February 18, 2020

It’s been quite a week this past week. I’ve struggled with walking at times.

It occurred to me that I may need to explain something. It’s not because anyone’s said anything, but it just came to my mind, so I’m sharing it here. I have more issues walking in big spaces like parking lots then I do in other areas. My only reasoning for this (that I can come up with) is that in large areas like that, there's nothing I can easily grab a hold of if I felt like I was going to fall. That's why when I'm blogging you almost exclusively hear me talk about having issues with walking in to or out of somewhere. Or I'll talk about falling in a parking lot. BUT, it amazes me how God allows the body to compensate or to “auto correct” itself at times. Our bodies instinctively know what to do to keep us from falling or injuring ourselves. While we may think of things ahead of time, it’s those reactive instincts that allow us to do what we need to do. One of my instincts is to not bend my knee when walking. I don’t set out and say to myself, “Now, don’t bend your knee.” It just instinctively happens. While it’s not ideal and it causes other issues in my body, I’m thankful for the natural ability to (for the most part) keep myself upright and moving from Point A to Point B. It may not be pretty, but it gets the job done.

Four years ago, on February 16, 2016, I began my (surgical) deep brain stimulation journey. I’d begun the process months and months before, but I didn’t start the surgical part until February 16. As I’m typing this, a memory popped into my head. My neurosurgeon, Dr. Konrad told me that the surgeries would be the easy part for me. The hard part for me would start AFTER the surgeries. Boy, was he ever right! Since I have new people reading my blog, I thought I’d include a link to what I wrote about the first of these DBS surgeries. So, here’s what happened four years ago:
1 down, 2 To Go

Back to this past week. I fell again. This time though it was while pushing a grocery cart (in a parking lot - see, I fall in parking lots a lot!). It takes real talent to do that - to fall while holding on to something that’s supposed to prevent me from falling! 😉

Ya’ll Jesus answers prayers – no matter how big or small. He answers them all. On Wednesday, I was having a time. Walking was not coming naturally. I went to church that night as I do every Wednesday. We were having communion so I knew that I'd have to walk up to communion and back to my pew. So, I prayed. I prayed that I would either 1) make it up and back from communion by myself without falling, or 2) If God thought I needed help that he would provide someone to help me. As we were preparing for communion, a friend quietly slipped into the pew I was sitting in ( I was the only one in the pew - it's a lighter attendance on Wednesday nights!). She leaned over and said, “I thought you might like some help getting up to and back from communion.” I turned to her and told her. “You’re the answer to my prayer.” She said to me that she felt a nudging that she should help. That was God. While we were receiving communion, I almost cried. God cares for us. No matter how “trivial” the ask is, He’s got us.

So, while this past week hasn't been stellar, it also has not been horrible. I've seen God's grace written over everything. And how could I not? God's Got This!

Tune-In-Tuesday: February 11. 2020

Has anyone else been a slump because of the weather, or is it just me? It's been raining cats and dogs here lately (in my humble opinion, I'd rather it rain men, but, we can't always get what we want - haha!) and it's been messing with my mood. I need sunshine!!! I know, it's February and it's supposed to be cold and rainy and dreary, but I'm looking forward to the sun shining again! Saturday, it snowed (unexpectedly - at least for me. That'll teach me to pay better attention to weather reports). Since it snowed, I stayed inside and since I stayed inside, I watched TV on DVD that I received for Christmas. I got the first season of New Amsterdam. It's a medical show. One of the episodes I watched dealt with deep brain stimulation. It wasn't for what I have, but anytime I hear "deep brain stimulation", it peaks my interest. I can literally say, I've been through that.

This past week, I also "met" someone else who's had deep brain stimulation done. He had his for a condition called ataxia, not dystonia, but still - I actually talked to someone who has had it done! I only met him over Facebook messenger as he lives in Mississippi (I think!). He's the husband of a cousin of someone I know. Haha - 6 degrees of separation, right?! ;) But it was so refreshing to talk to someone who's experienced the same thing I have. And yes, this is the very first person (in the four years since I've had it done) that I've talked to that has actually had it done. We have a couple of similar things in common: we both were hoping this was an "instant miracle", which it was not - but (speaking for myself) a miracle nonetheless. We both had to have the batteries that operate our DBS systems replaced after two and half years and NOT the five years we were told they would last - haha. I think the similarities end there, but I can't explain how exciting it was to talk to someone who knows went I through. And even though I'm in the media myself, no TV show can (or has) ever depicted it completely right (and really how can they when they're only working with about 45 minutes?!). I'm just glad that it is being talked about. I told the friend that introduced me to her cousin's husband that I will ALWAYS be a proponent of DBS. It's not for everyone and some may argue that I still have problems (which I do), but it has helped me tremendously and I wouldn't bat an eye to do it all over again even knowing it's not the "instant miracle" I was praying for. I love talking to people about it.

As with each week, last week had it's ups and downs, but I didn't fall!! I'm still nursing my wound from the previous week. It's almost like a paper cut. You know how a paper cut can be so tiny, but hurt so bad? This cut is small, but every time I peel the Band-Aid off (or it comes off on it's own), it starts bleeding all over again. I probably shouldn't keep a Band-Aid on, but at least it looks better covered up - haha!

Anyway, I think that's about it for this week. Always remember - God's Got This!

Tune-In-Tuesday: February 4, 2020

This past week has been a mixed bag. I’ve had good walking days and not so good days. I fell this morning. It happened right after I got in the front door at work. I’m not sure if I tripped over the rug or my own two feet (my guess is my own two feet). I’m thankful it wasn’t on concrete or asphalt and that only one person saw me! I skinned my knee, only because the skin there is so thin anyway (from previous falls) that it always breaks if I fall. Other than that, I’m fine. In fact, I’m more than fine, I’m great. I mean, I’m alive. I have family and friends who love me, I have a job that I love. Life is good. Sometimes a fall is just what I need to “reset” myself. It allows me to look inward again and realize all the blessings I have. Today’s verse of the day on my Bible app couldn’t be more appropriate:

I was kind of having a rough day on Sunday, but from Dale to Whitney to my own niece, Hope – I had plenty of help getting around at church. So thank you, one and all who helped! I'll never forget it.

It’s February and that means that later this month it’ll be four years since I had DBS surgery (I had my head shaved on Valentine's Day!). Wow. In some respects, time truly does fly and in other respects, the days are long! But as I told someone this past week; I’d do the surgery over again in a heartbeat. It’s not been the “instant miracle” I wished it was, but life is so much better because of it. God knows what He is doing, so I’m just along for the journey. I trust that His will is perfect. I truly believe that He wants what’s best for me and right now, currently, it’s the constant communication I have with Him. Actually, I know He wants that ALL the time from me. I'm just not always as great at it as I am when I'm having humbling experiences. ;)

You know how some people say, “Oh, if I had a million dollars, that wouldn’t change the real me.”? I’m the opposite of that (just being truthful) and God knows it! I’m the closest to Him when I’m crying out to Him to heal me. So, I don’t mind not being fully healed if it means I’m closer to the Lord. Ah – who am I kidding? I’m striving to not mind not being fully healed if it means I’m closer to God. That’s a more accurate statement. I pray that I can walk without issue and I don’t ever quit praying for the miracle.

God's Got This!

Tune-In-Tuesday: January 28, 2020

I'm having major writer's block tonight. I can't come up with anything compelling to say. There's really nothing to update on. Everything's status quo - which is a good thing! The only real update I have is that my (routine) neurology appointment was rescheduled from January 30 to June 9.

My walking has been stable (Haha- maybe I should use a different word here. I mean, stable and walking don't really go together in the same sentence when in reference to my walking. But, again - writer's block!). Some days my walking is good and some days it's not so good, but that's my life. I'm thankful for the ability to get around!

I found this on Facebook this past week and I've been thinking about it ever since, so I thought I'd share it here:

How true a statement!

I really have no clue why I'm having such a hard time writing tonight, but maybe that's God saying, I don't really need to say much at all. So, you get a very short post from me (we can ALL be thankful for that!).

Have a great week everyone and always remember: God's Got This!

Tune-In-Tuesday: January 21, 2020

Walking was good last week. I had problems from time to time, but overall it was pretty good. Today, I had more issues. I think it’s the weather, but it could really be anything, so who knows? I was talking with someone this past week and it dawned on me how God has built it in us to compensate when something is out of whack. I don’t choose to walk the way I do, I walk the way I walk because my body automatically reacts and compensates to keep me upright and moving (for the most part).

I compensate in other ways too. I know this is HIGHLY frowned upon by most of my friends (because I read your Facebook posts about it!), but I LOVE when someone doesn’t return their shopping cart to the shopping cart dispensary (is that what it’s called, or did I just make that up?). It means I don’t have to circle the parking lot a million times (looking like a stalker) to get a parking spot by a cart. Contrary to popular belief, the handicap parking spot is not always the best parking spot (and believe me I know, because before I had problems walking, I thought they were prime real estate. Now that I need the spot, I find it’s not always the most handicap accessible spot in the lot). I hardly ever return my shopping cart to its rightful place unless I happened to park right next to the receptacle or I’m having a pretty great day walking and think I can do it without having to hold on to something. There. I admitted it. I’m the worst! Judge away! 😉 But that’s one way in which I compensate.

Another way I compensate is to “text while walking” or basically just look at my phone while walking. I know, another “no, no.” What does this do for me? Well, for one, it “distracts” me enough so that I’m more likely to walk better. I’m not focused on who may be watching me walk. It also gives me an “excuse” for walking slower – because let’s face it – I walk SO SLOW. I shouldn’t care what people think of me (and there are times that I really don’t care), but I get anxious and using a phone just helps me compensate a little more.

I thank God for the many ways He has allowed me to compensate.

Next month, will be 4 years since I’ve had deep brain stimulation surgery. I had three surgeries in three weeks back in 2016. One on Feb 16, one on Feb 23 and the last on Feb 29. I think this year is significant for me because it’s actually Leap Year and it was on Leap Year 2016 that I had my final surgery. I re-read some of my blog posts from back then. I’m SO thankful that I blogged about it because I find them fascinating to re-read. One of the posts that I re-read was one from Dec 4, 2015. It was the night my neurologist called to tell me that the DBS Conference had been held that day. My neurologist brought my case up again (this was the 2nd or 3rd time) to all in attendance and this time, I was approved for DBS. They were all in agreement. First, they all agreed that my case was unique, but then they all agreed that if I was still game, DBS surgery would be the next step. To re-read that post – it felt like it was just yesterday. I remember where I was, what I was doing and everything about that night. If your new to my story or to this blog, feel free to go back and read blogs from my past. You’ll get the whole story. I don’t leave out much. 😉

I hope everyone’s having a blessed week. Thank you for reading and following along on this journey. Always remember, God’s Got This!

Tune-In-Tuesday: January 14, 2020

To be honest, I wasn't going to blog tonight. I've been in a funk and I just didn't feel like writing, but after putting it off for a few hours, I decided to go ahead and write anyway. :)

It's been a pretty uneventful week walking-wise and that's a good thing. It doesn't mean I haven't had issues (those are a daily occurrence for the most part) it just means I haven't fallen and things are pretty status quo.

Something happened today that I did find kind of funny. I was walking to my cube at work loaded down with my laptop, purse, lunch bag...and a lady passes me in the hallway and stops. She exclaims, "Oh my gosh! Do you need help?!" I smile and tell her no. She's a new employee and she was so sweet to stop and ask, but up until that point, I thought I had been walking pretty good! I guess it's all perspective, right?

Yesterday morning, I awoke to a nose-bleed. I used to never get nose-bleeds and now I seem to get them all of the time (OK, that might be a slight exaggeration!). Later in the day, I was at my desk at work and got another one. What gives?!

Anyway, I think that's it for this week. Always remember, God's Got This!

Tune-In-Tuesday: January 7, 2020

Happy New Year! It's hard to believe we're already 7 days into year 2020. I still have Christmas decorations up, although at the moment my house is in complete disarray because I'm in the process of taking them down. I usually leave Christmas up until Epiphany (which is January 6).

I had a great week last week - still celebrating Christmas and New Year's Day. It's been fun taking some time away from work to celebrate with friends and family. Routine is also good and I'm thankful for it as well. I haven't had any major issues with my walking, but there are moments. They're just that though - moments. I try not to let them define me. That's easier said than done for me, but at least I'm trying.

I went to a store the other day where there were no carts to hold on to until I got into the store. I could (and most of the time do) focus on the fact that it took me forever to get in to the store and forever to get back out to my car and that I probably inconvenienced people as they had to stop (in their cars) to wait until I crossed, however, tonight I'm taking a different approach: I walked in to and out of that store on my own two feet and didn't fall. I made it! I will confess that once i got to my car, I sat there a few minutes watching people walk all over the parking lot with the greatest of ease and I got a little jealous. But, God had me realize how far I've come and that having a little difficulty walking is by no means the worst thing ever. I was reminded TWICE today by two different people of how far I've come. I must have needed to hear that today! :)

I'm a member of a dystonia group on Facebook and the other day they posted an article about how those with dystonia may experience sleep disruptions. I didn't actually read the article, but that headline must have been rolling around in my brain because last night was pretty much sleepless. I don't think it really had anything to do with dystonia, but I was tired last night so I went to bed at 9:30/10 pm. I woke up at 1 am and couldn't fall back asleep for anything. I read my Bible. I thought surely three chapters of Leviticus (NOT Lamentations, which I think I told my dad I was reading. You know, they both start with "L" and are in the Old Testament - ha!) would put me to sleep. It did not. Finally at 2am I got up and started putting away Christmas decorations. I worked up until the time I had to get ready for work. I should be EXHAUSTED by now! I did have a right-after-lunch slump, but I got up from my desk at work and walked around for a few minutes and then was fine. I still have miles to go before all my Christmas decorations are put away, but hopefully tonight I will sleep!

Also with dystonia, repetitive motions trigger spasms. That's why a lot of musicians deal with dystonia and why "writer's cramp" is a dystonia. Putting decorations away, I'm experiencing some repetitive motions which cause my hands to cramp or my legs to feel like jelly. This could also just be a sign that I'm getting old. ;)

I have to say though, that I am still extremely blessed - even when walking is hard. I am able to live a rather normal life. Yeah, I have some issues, but in the scheme of themes, I can do (almost) anything I put my mind to. God has blessed me in SO MANY ways. I have the most awesome job that does not require me to be on my feet or walking all day. I have a home that I love (and that, even though purchased before any of my problems began, also happens to be on one level - God provides!). I have a family and friends who love me for me. And, I have God who protects me always. I'm blessed!

I go back to my neurologist on January 30 for a 6 month check-up.

I hope all of you have a wonderful week to this brand new year and always remember - God's Got This!