Tune-In-Tuesday: March 30, 2021

Hey everyone! Happy Tuesday. My apologies for not updating last week. There really wasn't anything to update you on, so I thought I'd give myself a break from writing and give you a break from reading! This past week has been great and there really isn't anything to update you on from it either, but I decided to blog anyway.

On St. Patrick's Day, I got my first COVID-19 shot. I'm very thankful for that. I had to do some investigating first though. Wal-Mart turned out to be the winner for me (in being able to get an appointment and get the vaccine). The wording surrounding the qualifications at places such as Walgreens, Kroger and walk-in clinics did not include anyone with neurological diseases. Wal-Mart's wording did include those with neurological and/or neuromuscular diseases. I still had to drive about 30 miles from where I live to get the vaccine as the Wal-Mart(s) in my town were out of the vaccine, but 30 miles is nothing! My second dose is scheduled for April 14.

My walking has been getting better! I've also given myself permission to bring the cane with me when walking in parking lots or other wide open spaces. I don't have to use it, but it's there if I need it. This has been an internal growing process for me. I so don't want to have to use anything to walk but my own two feet, but sometimes I realize I do need help, so I'm growing up and allowing myself to be humble enough to use assistance when I need it. 

I think that's it for this week. See - not a lot to update on! I'm very thankful for the improvements I've made and that walking isn't such a struggle. I do know that from day to day my ability to walk correctly can change, but I'm thankful for the good days!

This week is my favorite week of the year - Holy Week. This past Sunday was Palm Sunday. This coming Thursday is Maundy Thursday where we celebrate Jesus' Last Supper. Friday is Good Friday where we commemorate Jesus' death, all leading up to the most glorious of days: Easter Sunday where Jesus rises  from the grave having defeated death, sin and the devil.

Thank you for reading this post and I hope all of you have a most blessed and glorious Holy Week. 

Always remember, God's Got This!

Tune-In-Tuesday: March 16, 2021

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

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

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

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

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

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

Always remember, God's Got This!

Tune-In-Tuesday: March 9, 2021

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

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

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

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

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

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

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

Always remember, God's Got This!

Tune-In-Tuesday: March 2, 2021

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

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

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

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

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

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

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

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

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

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

Always remember: God's Got This!