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!