Wednesday, June 29, 2016

June 29 = 3 Months!

I know, I just posted yesterday. I didn't forget. It was "Tune-In Tuesday" after all! But today: June 29 marks the 3 month mark of when my deep brain stimulation device was turned on. I thought the occasion was worth another post. Plus, I'm in a MUCH better mood today then I was yesterday. Two posts in two days will probably mean less readers, but I'm OK with that.

Four months ago, on February 29 (yes, leap day!), I had my last deep brain stimulation surgery. I was still unable to use my left hand that had temporarily been paralyzed during surgery #2 and I had my head shaved (again).

Three months ago, on March 29, I had my deep brain stimulation device turned on. On that day, I imagined that on June 29 I’d have hair again and I’d be walking walker and cane free.

And now, June 29th has come.
Yes, I have more hair on my head then I did on March 29. But, I’m not wig-free yet.
And more importantly: I’m still using the walker and the cane.

As opposed to yesterday, when I was in some kind of funk, today (despite the disappointment of not being “assistance free” while walking), I’m in a much better mood and am feeling blessed. I’m choosing to count my blessings instead of my disappointments. My time is not God’s.

I don’t mean to sound arrogant, but I know in my soul that God has something big planned for my life. Shoot, it may be even happening now and I’m just not aware of it yet.

Three months is on the very cusp of when the doctor’s said that I should be feeling something from the DBS surgeries. Doctors may put me on a time line. I myself might put me on a timeline. But time to God doesn’t exist. His time is His time. When He speaks it, it is.

So….I’ll wait and I’ll practice walking and God will answer in His time and in His way and all will be well.

I saw the "verse of the day" today on my YouVersion Bible app and I thought it very appropriate:
“Restore to me the joy of your salvation and grant me a willing spirit, to sustain me.” Psalm 51:12

I also looked up a few Bible verses on "walking". And here two of my favorites:

“He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God.” Acts 3:8

“Then Jesus said to him, “Get up! Pick up your mat and walk.” John 5:8

My 3 month mark was not what I expected it to be. But that's OK, because "God's Got This" and in HIS time, everything will work for His glory.

Tuesday, June 28, 2016

Tune-In Tuesday: June 28

Where to start? To be honest, I don't feel like writing an update. One, because there isn’t much to update and two because I feel like whatever I do write, will seem like complaining in light of the news today that legendary Lady Vol basketball coach, Pat Summitt passed away after battling early onset dementia.

However, I need this blog to remind myself of what happens week to week, so I’ll force myself to write it. :)

I'm still not "turning it (the deep brain stimulation device) up". I'm waiting, ever so impatiently for 4 weeks to pass at 4.00 volts to see if anything happens.

This past Wednesday, I thought I saw improvement. It was so much easier to walk Wednesday night. I have no idea what I did or didn’t do, but I was thankful. Unfortunately, it only lasted that night, but I’ll take what I can get. It was easier to walk up to communion at church and instead of someone bringing me my walker, I walked to it (using my cane) and got it myself!

Friday night, I decided to check my remote to make sure that I had not accidentally turned the device off. I hadn't, however, the battery really, really needed to be changed, so I changed it and was able to walk a little better on Saturday. I know that has nothing to do with me changing the batteries, because the batteries are only to the remote, not the actual device, but I was thankful for the placebo effect anyway! :)

Saturday, I woke up and thought I felt electricity in my arm. I was so excited until I realized that I had just slept on my arm and it had fallen asleep. Haha. Oh well!

I’ve had some not-so-great walking days this past week which have frustrated me to no end. However, I've come to a conclusion. The days that are bad walking days are the same ones that I spend most of the day seated. I have now resolved to force myself to walk more. Even if that just means walking to the bathroom, to the break-room at work or to a co-worker's desk. I need to walk more. It’s the last thing I want to do, but I know it’s the first thing I need to do. No one becomes a great basketball player if they never practice shooting hoops. No one becomes a great anything unless they practice, practice, practice. So, I’ve resolved to practice walking more – no matter the outcome. I hope you’ll hold my feet to the fire on this because like I said, it’s the last thing I want to do.

I’ll end this short update by saying I know God’s still got this. I am forever grateful that He gives me moments of pure joy in between all the hard stuff. I know He doesn’t just do that for me. He does it for everyone, but this past week I am exceedingly thankful for those moments.

In memory of Pat, I wore my UT orange today!

Tuesday, June 21, 2016

Tune-In Tuesday: June 21

Hey everybody! It's Tuesday again. :) It still remains a "tune-in" as opposed to a "turn-it-up" Tuesday as I have not turned the deep brain stimulation device up any. Oh how I really, really want to though! But I'll remain at 4.00 volts until July 5 (if I've calculated that right), to see if that setting does anything. As of now, it hasn't. I get impatient at times, but I know I have to do what the doctor says to do, so that means I have to wait. Isn't that what God says too sometimes?! Ahh....I'm being taught so much in this process. God knew that the only way to grow me in the patience department was to make it mandatory and forced! I can be very stubborn (if you haven't already picked up on that!). Sometimes mandatory and forced is the only way I learn. To reiterate though, I haven't seen any improvements or any new changes. I'm still waiting on my miracle. :) And, yes, in my heart of hearts (despite the doubt sometimes), I do believe I will walk again without a cane or walker. My faith is only growing stronger through all of this. God knows what He's doing and He's got this!

A funny thing happened to me this past week. Actually, it happened twice. I blame it on exercise and not being awake. :) I exercise on a stationary bike twice during the week and twice on the weekend. I kid you not, Tuesday and Thursday of this past week, I got up early to work-out before work and both days, I got in the shower and used BODY WASH on my hair as shampoo. But not before washing my hair with actual shampoo. So, I had to wash my hair TWICE. It didn't happen on any other day of the week except the two that I got up extra early to work-out, which is why I'm blaming it on exercise!

This past week, I also made chocolate chip cookies. There's nothing special in and of that, except to say that I had not made them since before my surgeries and my co-workers were begging me for them. There is nothing special about my cookies. I use the recipe on the back of the Toll House semi-sweet chocolate chips I buy to put in the cookies. But my co-workers love them and I love that they love them. My co-worker, Austin, made the comment before I had any brain surgery, that he and the rest of my co-workers were fine with me having deep brain stimulation surgery on one condition: that the neurosurgeon not touch the part of my brain that allowed me to make chocolate chip cookies. So I made them and the verdict was that they may be even better than they were before I had brain surgery. Score one for me!

I was having a difficult time walking on Sunday afternoon, but I went to Kroger anyway because I needed to pick up some groceries. As I was walking back to my car, a man asked if I needed help. I guess it was quite obvious that I was having problems! I kindly said no. Then he asked if I had a faulty wheel on my grocery cart, to which I responded, "no, I have a faulty leg." This made him slightly giggle. I told him that the cart was the only thing keeping me upright at the time. On a different note, but in the same vein...I have a brilliant idea. Why don't all grocery stores put the cart receptacles right next to handicapped parking? It would "kill two birds with one stone": 1) People like me would be able to grab onto the cart and not have to use a cane or a walker to get to a cart, only to have to walk back to the car to dump off the walker. 2) There would be less carts in random parking spots or all over the parking lot itself because people like me would actually return it to the receptacle because it's right there! I know. I'm brilliant! Now, who do I talk to about making this change?!! :)

This week hasn't been without bumps and bruises. I scored this bruise by somehow tripping over my own walker and hitting my heel on either the walker or the refrigerator (I can't remember what I actually hit!).

Then today, I notice this bruise and I have no idea where it came from! But I have run into a million things this past week, so I'm not surprised it's there.

I have to say that I thought it was pretty cool that my neurosurgeon allowed me to get a picture of myself and him in the OR, but a church friend of mine, Brad, sent me a link to a YouTube video of awake brain surgery. This guy (Charles Trippy) was allowed to film his entire brain surgery and put it up on YouTube. No fair!! :) Haha. Actually, I think it's entirely fair, because he was having a brain tumor removed. So, the surgery was not entirely the same as mine. Thank you, Lord that I don't have a brain tumor or cancer! However, the video was fascinating to me because some of the same things that went on in his video went on in my surgery. If you like this kind of stuff, you should look Charles Trippy up on YouTube.

My "real hair" growth is coming along. There were a few times this past week that I thought I could go out without the wig, but then I chickened out. ;) Someone (who saw my real hair) told me that a lot of people cut their hair that short on purpose. I totally respect that and I think short hair looks great on some people, but I'm just not there yet! I like the security the wig brings me. ;) But, one of these days, I will surprise people. I will go into work or church without the wig. But for now, you'll have to be content with just seeing a picture of me on here.

I'll close today's post by reiterating that I know God has a plan and I know that it's good. It might not be exactly my plan, but I know that His plan ALWAYS trumps my plan. He is a good, good God and I see that every day in every way. God's Got This!!!

Tuesday, June 14, 2016

Tune-In Tuesday: June 14

Today was not a "Turn-It-Up Tuesday", which is why this post is not titled as such. Instead it’s a "Tune-In Tuesday". ;) I’m holding steady at 4.00 volts until July 5. It’s to see if anything happens at this level. Last week I thought that I might not have anything to talk about this week (since I’m not turning anything up), but that’s not the case. ;)

Before I go on, I just want to reiterate that I’m documenting everything I’ve noticed that’s different since the surgeries. These things may or may not be related to the deep brain stimulation, but I want to document them, just in case they are. I’m also probably being a hypochondriac with some of this stuff! Oh well. ;) My “symptoms” are weird and random. I'm just warning you.

I didn’t really even notice until half-way through the week, but the knuckles on my left hand hurt. I told you it was weird and random! They ache like I’ve been clenching my hand in a fist. The thing is, I haven’t been clenching my hand in a fist. I don’t have to be doing anything and they still ache. And it’s only my left hand. The knuckles on my right are fine. My upper left arm hurts too, like someone punched it or I had a shot in it – neither of which has actually happened. It’s not as prominent as the ache in my knuckles, but it’s there.

I have always been much more of a morning person then I am a night person, but I’ve noticed since all the surgeries that it’s flip-flopped. Mornings are a little harder and I get a second wind around 3pm. What’s that about?!! It probably has nothing to do with DBS, but it’s something I’ve noticed.

This past week, I’ve also noticed that it’s harder for me to start walking, but once I start, my walking is more fluid. But, then sometimes, I’m walking along “fine” and have to stop, to (in my words!) have my brain catch up with my feet. These two things totally contradict each other, so maybe I’m making too much of it!

That’s it for this week (and believe me, that’s plenty!). So now I wait and look for new things to happen. June 29th is the 3 month mark after the device was turned on. The doctor said I should be seeing effects of the deep brain stimulation within 3-6 months of it being turned on. I hope God allows it to be 3 months instead of 6 (or even longer). I have a feeling though that it may not happen in 3 months. God's time is not always my time! But then again, maybe it will! So, I’m going to quit trying to read God’s mind (because I wouldn’t be successful at it anyway) and just take each day as it comes.

I’ll end with this. I had the song “Always” stuck in my head today and I think it’s a perfect reminder of what I should do and what God always does.

by Kristian Stanfill

My foes are many, they rise against me
But I will hold my ground
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Troubles surround me, chaos abounding
My soul will rest in You
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
From You Lord, from You Lord

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Oh, my God, He will not delay
My refuge and strength always, always

Tuesday, June 7, 2016

Turn-It-Up Tuesday: June 7

On this addition of Turn-It-Up Tuesday, I turned my deep brain stimulation remote on this morning and was greeted with this message:

After flipping through the entire manual, I finally found out what it meant. Thankfully, it wasn't anything too bad. ;) It just means that the battery in the remote is running low and I should change it. This is NOT the deep brain stimulation battery which is implanted in me, it's just the remote. Whew! I can change that one, no big deal! I turned the remote off for a second and turned it back on (without changing the battery) and it didn't give me the same message. So maybe, it was just a glitch. Anyway, after that little "scare", I turned up the electricity in my brain to 4.00 volts.
I’ll stay at this voltage for a month now. This is part of the plan. If I don’t see any results at this level in a month, then I can switch frequencies and start all over again with turning the voltage up. I’m currently on Frequency A. Frequency B, according to Dr. T., stimulates more of the brain. So, I have my most favorite thing in the world to do: wait! And if you can’t tell, I was being highly sarcastic on that last sentence. ;)

Today, I almost bit the dust in my bathroom which resulted in this:
I said I almost bit the dust, but I didn't!! Yay. :)

Note to self (AGAIN!): Do not grab ahold of things that are already loose, it won’t help you! (This also includes: oven doors, refrigerator doors and pretty much any doors for that matter!).

After that incident, I tripped on the way into work too (but didn’t fall). It was just one of those mornings!! ;) But even after all of this I have been extremely HAPPY today. What?!?!! ;) Where did that come from?!! It came from God. Thank you, thank you, God for that! Here are a couple of other reasons that I'm happy:

I found this on my desk at work yesterday:
I don’t know who gave it to me (although I have a few suspicions), but it brought a smile to my face and has given me the greatest joy whenever I look at it. So, if you’re the person that gave it to me and you’re reading this blog, just know that I love it! Thank you.

Another reason I’m so happy is due to a conversation I had with a co-worker yesterday. I asked her about her weekend. She said she went and saw the movie, “Me Before You”. I told her I want to see it. I haven’t read the book, but the movie looks great. She said that if I want a good cry, it's the movie to see . :) But she also said that one of the underlying themes of the movie is to be happy with your circumstances, whatever they may be. This 2 minute conversation has resonated with me: be happy with where you are in life.

I shouldn't compare myself to others and yet that’s constantly what I do. I am working on this though. I'm working on being happy whether I walk assistance free or if, after all of this, God deems that I'll do more good in this world continuing to use a walker or a cane. God allowed me to realize again that if the deep brain stimulation does not work, that I've done all I can do. Each week, my faith gets stronger. It gets stronger because I'm not seeing any results yet. It's amazing to me how God works through my struggles to increase my faith in Him.

I took these pictures today of my real hair and had to laugh - it's so wild and unruly right now. I continually have massive bed-head!! But, it's OK, because I'm still using the wig. :)

I have had a joy-filled day and it’s not because I can suddenly walk without a walker. It’s not because I felt any electricity in my toes or leg. It's because God allowed me to have it. He put the joy in my heart. And for that, I am very, very thankful. God is showing me through the struggles, just how blessed I truly am.