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!