Tuesday, May 31, 2016

Turn-It-Up Tuesday: May 31

Now it’s Turn-It-Up Tuesday and I did turn my deep brain stimulation device up to 3.90 volts.

Still nothing. No difference whatsoever in walking. I’m getting used to this! Maybe that’s the way God’s going to allow this to go so that when the day comes, I’ll be completely surprised yet completely overjoyed by it. He seems to work a lot like that in my life.  ;)
I’m a little more discouraged today then I was on Sunday, but I’m not hopeless. Yesterday, I almost fell. Almost. I was able to catch myself before doing so. I’ve been tripping a lot lately. No more than before the DBS surgeries, but more than I thought I’d be after them. Last Wednesday, I couldn’t get my balance at all. But, thankfully that only lasted a day.
It's when I started to get discouraged that God brings in the reinforcements.
My friend, Savannah, tagged me in this photo yesterday. I’m guessing that I must be a pretty good actor around her, because I don’t always have joy in my heart. But thank you, Savannah for thinking I do!

I definitely want to live by this model, but I also know I've got a lot to work on. Some days choosing joy is easy, other days, it's as hard as learning to walk without a walker.

Just when I needed it most today, my friend Kristen tagged me in this photo. Just another gentle reminder!

A co-worker asked if I turned the device up today and I told him I had, but didn’t see any results yet. He said, “That’s OK, we’ll dance next week.” ;)

And to close the night, I got to play with BOTH of my nieces. That brought joy upon joy to me. I love those girls with all my heart!
Yes, when I start getting discouraged, God definitely brings in the reinforcements!! Thank you, God for them. Thank you to everyone for all the encouragement. Thank you for being a part of my story.

Sunday, May 29, 2016

3 Months, 2 Months

No, it's not Turn-It-Up Tuesday, but today - May 29, 2016 - marks 3 months since my last deep brain stimulation surgery on February 29. This also means that it's been 3 months since my last head shave. Because of this, you get a couple selfies with my real hair:

It's no Audrey Hepburn hair, but it's got texture, so I'm hoping I'll have curls again. ;) I did a stupid thing yesterday and Googled "How fast does hair grow?" The answer was that hair usually grows half an inch a month. Of course, this all depends on age too. HALF AN INCH!!!!!!!!!!!! People, that is not a lot for someone who had every hair on her head shaved off!!! It's going to take forever for it to grow back. I do find it funny though that I'm in between my two nieces when it comes to hair. Little G (who will be 2 in July) has more hair than me by a mile (or more!). But, I do beat Baby H (who will be two months in June). Haha. I, myself, am still not comfortable going out in public without my wig. Thank you to all of you who say I look beautiful with or without it, but I'm just not "there" yet to go wig-free anywhere except home and around family. I'll get there though! This whole journey is a lesson in patience.

Today also marks the 2 month anniversary of when I had the deep brain stimulation device turned on. That was done on March 29th. I'm still not seeing any results to speak of, but I'm NOT going to get discouraged. God's Got This and I know, it'll all work out for His good. Plus, the doctors said not to expect to see anything until 3-6 months out - so I have at least another month!! Haha. I have seen some things with my hand (like twitching and twisting) that I don't like, but with time I think everything will settle down and work like it's supposed to! In 2 weeks, I'll be at 4 volts of electricity. It's at this point that I am to stop turning it up for a month and see what my body and brain do. Hopefully they will behave and react the way I want them to! Sometimes, I think they just need time to figure out what to do with all this new electricity going on. ;)

I can't wait to see what God's going to do next in this journey. My absolute favorite Christmas song is "Mary Did You Know" and my absolute favorite part of the song is:
"The blind will see.
The deaf will hear.
The dead will live again.
The dumb will speak.
The praises of the Lamb."

As I've said before, it's not lost on me that my last deep brain stimulation surgery was performed on LEAP day. You just can't tell me that God doesn't have a sense of humor. Ya'll, one of these days, I'm going to LEAP!

Tuesday, May 24, 2016

Turn-It-Up Tuesday: May 24

It’s Turn-It-Up Tuesday again! I'll be honest, I’ve struggled writing this post tonight. There are only so many ways you can say, “I’m still waiting. No change yet.” ;) That’s the case this Tuesday and yet, tonight I’m feeling extremely blessed. I woke up this morning in a fantastic mood (two minutes before my alarm clock went off!) and have had an excellent day.

I turned the electricity up in my device today by .10 so I'm now at 3.80 volts.

So far, my walking hasn't gotten any better. It also hasn't gotten any worse, so that's something, right?! I'm grasping at straws here people. ;) I so, so, so want to post that I'm doing great and walking without assistance. To date that's NOT the case. But (surprisingly, to me!), I’m OK with that tonight.

God’s Got This. He’s got my heart. He’s got my soul. He’s got my mind. He’s got my body. He’s got ONLY the best in store for me (and for you too). So, tonight, I’m resting in that. Don’t get me wrong, I'm still battling frustration, impatience, and other things, but one thing remains the same: I KNOW God has big plans for me. I really, really hope I don't sound arrogant in saying that, because that's not my intent at all. I just know who holds my future and that He's doing great things in me. Even in this time of frustration and anticipation, worry and "what-ifs", I'm learning and growing. It gives me great comfort to know, ““Very truly I tell you,” Jesus answered, “before Abraham was born, I am!”” John 8:58 NIV

Although these posts can make it seem like I’m handling all of this with grace and a smile on my face, that couldn’t be further from the truth sometimes! I do thank each and every one of you who tells me that I’m handling it all so great. You inspire me. Really. I want to be what some of you think you see in me. But being honest, I’m grumpy, shallow, impatient, jealous, moody, cranky, self-absorbed, short-tempered and the list could go on and on and on. I’m constantly asking God and others for forgiveness. Just ask my family and closest friends. They’ll tell you! ;)

On a totally different note, I am dumbfounded by which of my blog posts get the most views and which ones don’t. I don’t know who reads this blog (unless you tell me!), but I can see how many views each post has and the ones I think will be read the most, aren’t and the ones that I’m the most anxious about or the ones I think won’t get read, get the most views. I know that’s God. It’s Him because He knows when I need encouragement and when I need a BIG piece of humble pie. ;)

And just when I thought I was going to close this post out, I read (on my phone, yes, I’m multitasking!): “Rocker has terminal brain cancer.” And God humbles me again. I don’t have brain cancer. Thank you, Jesus! I have a little difficulty walking. And it’s all brought into perspective again. It's humbling, so very, very humbling. Thank you, God for this humbling, because it's in this that I grow. (The rocker that has brain cancer is Gord Downie of The Tragically Hip. I don’t know who he is, but I ache for him.)

So, I’ll take my no new news this week. I’m more than thankful for it! God knows my heart. He knows I want to walk without any assistance. He knows I'm impatient. He knows I only want to do His will. He knows that I’m still waiting. And I know, God’s Got This.

“The Lord will fight for you; you need only to be still.” Exodus 14:14 NIV

Tuesday, May 17, 2016

Turn-It-Up Tuesday: May 17

This Turn-It-Up Tuesday, I woke up in kind of a funk. I haven’t seen any significant results yet in my walking abilities and I was thinking “what good is it going to do today to turn the electricity in my DBS device up?” But then, while brushing my teeth, God brought to mind the day after my 2nd (the awake) surgery. That day, I couldn’t pick up my toothbrush and I definitely couldn’t put toothpaste on it and I was wondering if I would ever get the use of my left hand and arm back again. I was wondering if I had made a huge mistake in having the surgery. After God brought this memory to mind, my funk subsided. It didn’t fully leave, but I did start praising Jesus. After that second surgery, I had to trust Dr. K. when he said that use of my arm and hand would return. I had to trust God that He would allow that to happen. I had no control over the situation and I just had to trust. Fast forward to today and I can use my arm and hand again. I can pick up my toothbrush, put toothpaste on it and brush my teeth. I can open doors. I can put clothes on. I can type on a computer. Thank you, Jesus for the use of my arm and hand again and for the reminder that everything happens in YOUR time.
When I want to wear a top, but I know that that top will visibly show my scar, I add a necklace and it covers it!  

I turned the deep brain stimulation electricity up by .10 this morning. I’m now at 3.70 volts.

I could have turned it up to 3.80, but decided to only go up .10 this week. After turning the electricity up, I did notice that my left hand twitched a lot. If it wasn’t my hand, it was a finger. However, by this afternoon, it stopped. It could have been related to the electricity being turned up, or it could have been related to something entirely different.

Earlier today at work I thought I might have been walking a little steadier. But, as soon as that thought popped into my head, my foot got caught on the carpet and I stumbled. I was using the walker though and I didn’t fall. I had to laugh because I felt like God was bringing me down from my high horse. ;) We all need a humbling experience sometimes to keep us in check!

I’ll admit that I’m battling frustration. I really, really, really want things to work and work now. I don’t want to wait anymore and yet I know I have to. This isn’t a magical process. God could make it magical through a miracle, but He’s choosing, for the time being, to have me wait. For what, that remains to be seen. I may not ever know, but I do hope that God will reveal it me. And as much as I gripe and complain about the wait, I’m still learning so much and wouldn’t trade anything that I’ve gone through and am still going through. I wouldn’t trade it because it’s making me stronger. God's got a plan. It may not be my plan, but that's OK, because His plans always work out a thousand times better then mine! I think sometimes God has to force me to learn things because I’d never learn them on my own! Does He work like that? Well, yeah…He refines us. That’s what He’s doing with me. He's refining me.

I was reading from the New Life Version of “The Bible Promise Book” last night and read all the verses on patience. This verse really spoke to me:

“You must be willing to wait without giving up. After you have done what God wants you to do, God will give you what He promised you.” Hebrews 10:36

The NIV version (which is my choice of versions in reading the Bible) of the same verse is:

“You need to persevere so that when you have done the will of God, you will receive what he has promised.”

Romans 5:3-4 says, “We are glad for our troubles also. We know that troubles help us learn not to give up. When we have learned not to give up, it shows we have stood the test. When we have stood the test, it gives us hope." (New Life Translation)

The NIV version is: “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance; character and character, hope."

We glory in our sufferings?!! What do you mean by that God?! I do NOT like this. I do not like it one bit. BUT, the verse doesn’t end there. Suffering leads to perseverance, perseverance leads to character and character leads to hope. I just hope that my character is not a bitter soul. Sometimes, I feel like it is. I see evidence of a hardened heart and I HATE that. I battle it constantly. I don’t want to be bitter or hardened or defeated. So, I put my trust in the Lord and constantly ask for His forgiveness. I’m a work in progress (as is everyone on this earth). I do thank the Lord for refining me though. It’s through the struggles in life that we bloom.

This past week, I didn't see any significant results, but that was last week. I DO have hope that this week, I'll see something. And if not this week, maybe the next. Or maybe I have to wait months or a year or more. It'll be OK though because I know the One who made me and I know He doesn't make mistakes. I do still trust that the Lord hasn't forgotten about me. I can not wait to see what He has in store for me. I get a sense that it's bigger than I can even dream about. Whatever it is, I know it'll be worth the wait!

Tuesday, May 10, 2016

Turn-It-Up Tuesday: May 10

Today's Tuesday! I went to bed last night especially early (like 9:30pm early) in anticipation of today. In anticipation of what, I didn't (and still don't) know, but I must have needed the sleep because I slept amazingly. This morning I woke ready to have a fantastic day. I got up early and exercised and had my best work-out in weeks. It must have been the extra sleep! ;)

I had a slight hesitation in upping my DBS this morning. My hesitation was: should I bump it up .10 or .20? I had already bumped it up last Tuesday by .20 from what Dr. T. set it at in the office. This past week, I've noticed changes with my left arm and hand, but nothing with my leg or foot. My arm and hand are different. I can't really explain it because I'm not exactly sure what's going on. I do know that sometimes my hand and my fingers will jerk when I'm not telling them to. ;) So, I wondered if turning the electricity up would make the jerking worse or better or leave it the same. I also wondered if maybe I should actually turn it DOWN to see if that made my arm or hand and fingers better. But, never one to back off of something, I quickly let the thought of turning it DOWN leave my brain. ;) I turned it up by .10 and waited - like something was going to happen right then and there. Haha. It didn't. So I turned it up another .10 and left it. I'm now at 3.60 volts.

After last weeks visit with Dr. T. and my wrongly thinking I felt something (I was wrong, because at the time I thought I felt something, unbeknownst to me, Dr. T. had turned my device off!), I'm a little shy to jump to any conclusions now. ;) The truth is, I'm not sure what I'm feeling, or if it's related to anything DBS. This just means that I have to trust that God knows what He's doing (and I do trust Him because I know He knows what He's doing!) and that in HIS time (not mine) things will work out for HIS good (not mine). This may or may not mean that I'll be able to walk cane or walker free. That statement doesn't mean I've lost hope. Far from it. I'm actually overflowing with hope. It just takes time and faith. God's time is not my time, so I have to wait (and wait and possibly wait some more), and have faith that God's Got This!!!!!!! (and He most certainly does.).

On another topic, I thought a wig would be awesome. Truly, overall, it is, but sometimes it drives me CRAZY!!! My impression of wigs was that all you had to do was put them on and go. That could not be further from the truth! I try to style it like I want and then it moves and gets in my eyes and causes me to look in the mirror constantly to make sure it's still how I want it. It's a little frustrating. Don't get me wrong, I WANT the wig and I love it when it behaves, it's just not as "carefree" as I thought it was going to be. I probably need to wash it too, but I'm too impatient to do that right now. Today's wig picture is me trying to hide the zits I now have on my forehead from constantly swiping it with my hand to get the bangs out of my eyes.
I'm still getting a ton of compliments on the wig. Just today a co-worker (from an entirely different department, who didn't know I had surgery or that I was wearing a wig), complimented me twice on how she loved my hair. The co-workers sitting around me contained their laughter until after she left. Usually, I come right out and tell people that I'm wearing a wig, but for whatever reason, I kept quiet this time. It was rather entertaining though. After she left my cube, I turned to my co-workers and lamented that it's pretty bad when people like your fake hair better than your real hair!

Speaking of my real hair - I'm missing it. I was going through some older pictures the other day and found this one and coveted my own hair. I want it this long and this curly again (much against what my mom would like...she likes me to keep my hair shorter. Sorry, Mom!).

So that's it for this edition of Turn-It-Up Tuesday. Not a whole lot to report. If anything DOES happen between now and next Tuesday, I'll be sure to break-in and update the blog. For now, I'm content with watching "Chicago Med" and "Chicago Fire" tonight and waiting on the Lord to do amazing, outstanding things that I can't even fathom!

Tuesday, May 3, 2016

Turn-It-Up Tuesday: May 3, Return to Vanderbilt

This Turn-It-Up-Tuesday started early – like 5:45am early. I got up and exercised on the bike. I knew it was going to be a busy day and wasn’t sure that I would have enough time at the end of the day to get a work-out in, so, sacrificing a little sleep was going to have to be the trade-off. It was well worth it! After I got ready, I turned up my DBS device. Slow and steady, right? So I turned it up by .10 which made it 2.60.

I didn’t feel anything, of course. I think I’m getting used to this. ;)

Today was different though because it was my return appointment to Vanderbilt. I was really excited about it. I didn’t know what to expect, but that didn’t make me any less excited (in a good way!) about it.

My appointment was at 10am CST and Mom was going with me. We left at 8am EST and arrived a little after 9:30am CST. I love when we gain an hour. It’s not so much fun when we’re coming home though. On the way there, we always pass by this lot that is just car after car after car. I think it’s where those who drive 18-wheelers, park their cars while they are driving the 18-wheelers. Today I tried (and tried being the operative word!) to get a picture of it.

Then I saw this van in front of us and took this picture:

Then I saw a Johnny Cash billboard. I love Johnny Cash, so I took a picture of it.:

A little while later, Mom and I both saw a car and at the exact same time (I kid you not) said, “Interesting”. We were both talking about the color of it. Out of all the words we could of come up with to describe it, we both picked the word, ”interesting.” That, in and of itself is interesting! Like mother, like daughter. ;)

Like I said earlier, we arrived a half hour before my appointment. Anyone who really knows me, knows that that was just fine with me! Mom went across the street to get a coffee and I checked in. No sooner had I taken a seat (which grant it was a few minutes because after a 2 and ½ hour trip, I had to use the bathroom), then my name was called. Mom was still at the coffee shop, but they took me back and got my vitals. This time my blood pressure was 117/82. I must not have been that nervous. ;) But I was cold. The medical assistant taking my temperature asked if I actually had the thermometer under my tongue. Yes, I did, but it took forever to read and when it did my temperature was 97.6. At least I know I don’t have a fever! Mom came in in the middle all of this.

After vitals were taken, we were lead back to the exam room and Dr. T. came in shortly after that. He asked if I had been turning the device up every week. What?!?!?! Of COURSE I was!! Who wouldn’t after all the trouble of all the surgeries?!! Maybe some of his patients forgot to do it? I tried to figure out why he would have asked that if someone hadn’t given him a reason to ask. I told him that I had been turning it up by .10 every week, but I hadn’t really seen any results. I told him about the two falls I had and about thinking that I experienced some electrical sensation in my middle toe. He asked if I had any problems with turning it up each week and I said no. I told him I was impatient though and he acknowledged that he could see why I would be. He said that after all the surgeries, to want to see immediate results is not unfathomable. I told him about all my friends on Facebook who tagged me in that Parkinson’s patient’s DBS video that shows him going from shaking uncontrollably to completely still. If you were one of those friends, thank you. I did have about 10 of you share it with me! If only DBS for dystonia worked like it does for Parkinson’s then I’d be all set. Unfortunately, for dystonia it can take months to take effect. In fact, Dr. T. said 3-6 months, but then the medical assistant said it could even be up to a year! I have a feeling that I’m just going to have to march to the beat of my own drum. I have to stop worrying about what should happen and when it should happen and just trust God that it will happen in HIS time!

Anyway, back to the appointment. Dr. T. wanted to see me walk, so I did, but not with my walker or cane and not very good at all! I held on to the wall most of the time and told Dr. T. that that’s what I was doing during one of my falls. Thankfully, he didn’t make me walk far or for very long. He could see what was going on. Then he tested my motor skills, they were also not very good on that left leg and arm. And then, music to my ears: He said he was going to turn my device up and also program another frequency into it. So he did. YAY!!!! As he was doing so, he would ask if I was OK or if I felt any different. I didn’t feel any different and I was OK. Then at one point, I gasped a little. He was like, “What?!” And I said, "I think I felt something in my foot". To which he responded, “You’re not even turned on!” (He had turned off the device for a minute.) Really?!! Wow, I must really, really, really want to feel something! We all (Dr. T., myself and Mom) had a good laugh about that. While Dr. T. was programming my device, we chit-chatted. I found out that he has two sons and his wife’s birthday is July 4. He found out that my brother, sister-in-law and niece are moving to Knoxville in July and that my brother and I share a birthday, but we aren’t twins. After he calibrated and programmed everything, he told me what he did. He turned it up to 3.20. He said he wanted me to slowly inch it up every week, but said I could go up .20 if I wanted to instead of just .10 per week. When I get to 4 he wants me to stop and stay on that level a good while (meaning a month). If I see no improvement at level 4 after a month or so, I could switch frequencies. I’m on “A” frequency now and he programmed a “B” frequency as well. He said what I’m on right now is only accessing one region of my brain. If I switch to Frequency B, the device will start accessing the region that it previously accessed as well as another region. So, Mom and I have differing remembrances of what Dr. T. told us about this. She thought he described the theory I just gave you. What I thought he said was that Frequency B would access two places on the electrodes in my brain. So, two people, two different understandings of what we heard. If we ever get it right, it’ll be a miracle. ;) Either way, “Frequency B” accesses more of my brain and/or the device than “Frequency A”. He showed me how to do all of this changing frequencies and turning up the device. It was at this point that I (again) started feeling bionic! After he showed me everything, he wanted to see me do it, so I programmed it a few times. At this point, I was still at what he set the device at: 3.20. I asked him if I could turn it up more right then. He said he’s more conservative, but if I wanted to turn it up right then, he’d let me. So, I turned it up to 3.40. Hey, he said I could go up by .20 every week. ;) So that’s where it stands right now: 3.40.

I asked Dr. T. what I should be looking for in regards to feeling anything. He said that my leg and foot muscles should become looser. My foot shouldn't turn in anymore. He said he wanted to see me back in 3 months. When the scheduling coordinator came in to schedule the appointment, she noticed that my 6 month post-op appointment would be in September and 3 months would be in August, so we just decided to wait until the 6 month post-op appointment. She scheduled my return appointment with Dr. T. for Tuesday, September 6, 2016. Not only will I see Dr. T, but also Dr. W. who is the neuro-psychiatrist that I saw pre-surgery and I’ll also have another motor skills test. Dr. W.’s appointment will be 3 hours long. Three hours of testing. Three hours of, “I’m going to give you 10 words to memorize and repeat back to me.” Haha. After the 6 month post-op check-up, I can actually have my case transferred to my Knoxville neurologist and won’t have to keep going to Vanderbilt for appointments. That’ll be nice, but I will miss Dr. T. and Dr. K. (the neurosurgeon) and everyone. I won’t miss the 2 and ½ hour drive though!

Mom and I decided to make this a fun day after the doctor’s appointment. We went to see a play at the Cumberland County Playhouse which is in Crossville, TN (between Nashville and Knoxville). We stopped at McDonald’s for a quick bite to eat. For whatever reason, I was craving their oatmeal. It was at this point that I told Mom maybe I should go back down to 3.20 on the device. She asked why and I said that I felt like my hand was cramping up/drawing up more than usual. But just as soon as I said that, I knew I wouldn't do it. It’s always go big or go home with me. ;) We made it to the 1pm showing of “Southern-Fried Nuptials”. It was a fantastic show!

After the show, we drove back home to Knoxville and met up with some of my mom’s friends and went out to eat at Aubrey’s.

It was definitely a full day, but a great day! I have to thank my mom so much for going with me. I had a great day with her and am blessed that she is willing to go to all these appointments with me. I can’t thank her enough!

I’m still so excited to see what the Lord is going to do in my life. I know that He’s got this and I just have to trust Him.