Thursday, April 28, 2016

Could It Be?!

Could it be that I’m starting to see signs of a miracle taking place? Yesterday (Wednesday, April 27) while sitting at my desk at work, I think I felt signs of electricity hitting my toes on my left foot. I ever so slightly exclaimed to my co-worker, “I think I felt something in my toes!” She asked if that was a good thing and I said yes! I wasn’t expecting it since I had turned the electricity up the day before and had only felt something in my fingers. Then I started questioning myself. Maybe I thought I felt something. Maybe it was something else that caused the sensation. All of this happened right before lunch. I didn’t tell anyone except my one co-worker. I felt the sensation on and off the rest of the day and I kept questioning myself, wondering if the sensation was real, or if I just wanted it to be! But it was there. In my middle toe on my left foot. I was in the best mood yesterday afternoon because of this. By the time I went to church last night, I couldn’t wait to tell Mom and Dad. I was SO EXCITED!!!

I thought about writing a post last night and sharing the news, but then I thought, “What if it’s not real? What if I say something and get people all excited (myself included) and it turns out to be nothing?” So, I decided not to post, but I couldn't contain my excitement. God reminded me that He's still here. He's still listening and He still cares.

An incredible thing happened this morning. I got out of bed and I knew something was different. Right away I knew what was different: the middle toe on my left foot was straighter then it’s ever been! A little back story is needed here. When I was in high school, I broke my toe. Not my big toe or my pinky toe. I had to do it big and break the exact-in-the-middle-of-my-foot toe. :) It’s because of this break that my toe has never really laid flat or straight since – it always curls up. But today, today it was laying flatter than it has in years. I felt more confident on my feet this morning. I took this picture after I had exercised on the bike this morning for an hour. I really should have taken the picture as soon as I got up because after exercising, it wasn't as straight or relaxed as it had been, but oh well! You can also see in this picture that, in contrast to my right foot and toes, my left foot and toes are scrunched up. That's the dystonia. But, one step at a time, right? I'll start with one toe being straighter then it has been. I'll move up from there!

Whether it turns out to be something or nothing, I’m giving glory to God. Just a twitch of electricity felt in my middle toe on my left foot has put the BIGGEST smile on my face and joy in my heart. Once again God has given me hope!!

I also want to mention that I was completely overwhelmed with love yesterday when I checked my mailbox and saw a package in it. The package was actually a beautiful scarf from a college friend that I have not seen in 14 years. Fourteen years!!!! But because of the magic of Facebook we have kept in contact. She is now a missionary with her husband and kids in Ecuador. She wrote me a note and said that was I famous in Ecuador because when they meet every Wednesday morning for prayers, they pray over me. I am so humbled by this. Ironically, we started calling Andrea, “Sparky” because she was jolted by a bolt of electricity when she tried to fix an outlet in a dorm room during our college days. Do you remember that, Andrea?! I’m so glad you didn’t die or get hurt or anything!!! It’s ironic that I get your gift on the same day I felt electricity – haha!! But then again, it's not ironic - it's a God Thing!! Thank you, Andrea for your sweet gift which I will wear endlessly and your even sweeter spirit. The love of God was evident to me in your sweet actions and words.

Ya’ll, I’m riding on a high right now. It’s not drug-induced or exercise-induced. It’s hope-induced. Thank you, Jesus for sending me (even in the tiniest of actions) hope.

My prayer is that the whole world will know what God has done in my life. Whether big (allowing me to walk walker and cane free) or small (a tiny twitch of electricity in my middle toe on my left foot), I will rejoice in the Lord and bring glory to His name.

It's a Thumbs-Up Thursday!!

Tuesday, April 26, 2016

Turn-It-Up Tuesday: April 26

It's Turn-It-Up-Tuesday again and I have FINALLY gotten up to 2.50 volts!! I don't know why this excites me as much as it does. Next week will be 2.60 and so on. I guess just getting to two and half is a milestone (although I don't know what milestone it is!). I'm just happy to be at 2.50.

Talk about a snail’s pace this process is!! On Sunday, my dad asked me how many weeks this makes that I've had the device turned on and that I've upped the electricity in it. I told him four. Four weeks. It’s been 1 month. So, why was I thinking that it was getting closer to 3 months? I was getting really discouraged. Then it hit me (dare I say like a bolt of lightning?! - haha!): all this time, I had been using February 29 as my start date (for when the device was turned on and working). That was the date of my last surgery (when I had the battery installed). I didn’t get the device actually turned on though until March 29. Sheesh!!! It wasn't activated and working until March 29 NOT February 29! Yes, I truly am only 1 month in. The doctors warned that I may not see any improvement for 3-6 months. Thank you, Lord for reminding me that it’s only been 1 month!!!!

When I turned the device up this morning, I did feel a little electricity in my left pinky finger, but nothing else. Nothing in my leg or my foot. Maybe something will happen this week. Maybe! In the meantime, it's back to waiting.

Last week was, again, not one of my best weeks walking-wise. It could have been worse, so I’m not complaining. I didn’t fall, but I did have a near miss at church. Thankfully, I had my cane in one hand and Mom holding onto my arm. If I hadn’t had Mom there, I would have fallen. Thank you, Mom for catching me and keeping me upright!

I’ve had several people ask when I am going to stop wearing the wig. I really have no idea. I guess the simple answer is: when I feel like it. ;) I don’t feel comfortable enough yet to go without it. I can (and will) post a picture here on the blog, but that is definitely NOT the same as seeing someone in person without my wig.
I have had people tell me that I look good without the wig, but I myself don't care for the look. I don't feel beautiful or comfortable. My hair is growing back fast. It’s to the point now where little wisps are covering my ears and I’m getting a rat’s tale in the back. ;) I still see my scars. When they are completely covered, I may feel better about going without the wig.

I have two Audrey Hepburn framed pictures hanging on the wall in my bedroom. I see them every day, but it wasn’t until this past Sunday, that it struck me: I want to look like Audrey Hepburn with short hair. ;) Now, I’m no where near as pretty as her, but if I get my short hair to look like hers, then I think I would definitely go without the wig!!

One thing that helps when I’m feeling discouraged about not (yet!) seeing results, is to exercise. In some ways, I can’t even believe I wrote that sentence. Just a short five years ago, I wanted nothing to do with exercise, now I turn to it to lift my spirits! That’s crazy!!! I feel very, very blessed that I can still exercise. Just because I use a walker and/or cane to walk, doesn’t mean I can’t sit my butt on a stationary bike and exercise. I exercised just this morning before work and it energized me and got my endorphins going and I had that “runner’s high” that everyone talks about, but all from exercising on a bike.

As I was exercising, I was watching the news. The weather for today came on and made me smile. I am southern through and through and absolutely love warm sunny days!!!!!!!

In case you can't read what that says, it's a high of 60 at 8am, a high of 75 at noon and a high of 83 in the afternoon.
A week from today, on May 3, I head back to Vanderbilt for a check-up with my neurologist. I’d LOVE to walk in there walker and/or cane free, but these things take time. I have a feeling that next Tuesday will not be my time, but who knows, God is in the business of miracles! I'm kind of scared that Dr. T. will tell me that I've been adjusting the device wrong. I wonder if he will increase anything in regards to the electricity in the device. I’m on a level 2 right now. The device can either go up to 4 or down to 1. It's within those parameters that I can do adjusting (the .10…).

I have the YouVerse Bible App on my phone and I just looked at the verse of the day. God sure has a sense of humor for this is what it is: "In their hearts humans plan their course, but the Lord establishes their steps." Proverbs 16:9
Thank you, God for the reminder!
And also for this one:
"Be still and know that I am God." Psalms 46:10

I am still extremely excited to see what God's going to do next. It's an adventure and I can't wait to see what lies ahead.

Tuesday, April 19, 2016

Turn-It-Up Tuesday: April 19

It’s Turn-It-Up-Tuesday!! I upped the electricity in my deep brain stimulation device to 2.40. I keep thinking this is soooooo slow! And to make my point, last week was not very good walking-wise. I fell not once but twice. I’ll stop here and say, I didn’t hurt myself either time. One incident ended up being hilarious, the other just down right frustrating. But last week was also filled with joy as I became an aunt for the second time! God certainly gives beautiful distractions from the frustrating parts of life and for that, I am so very, very thankful!

In last week’s post, I said that I was having a difficult week because it felt like I was completely off-balanced and walking like I had before the DBS surgery. Well, it didn’t get much better after that post. Wednesday, I LITERALLY fell out of my cube at work. I got up and had my walker in front of me. I took a step with my right leg, but when I tried to do the same with my left, my leg and foot cramped up and turned in and even though I was holding on to the walker, it didn't prevent me from falling to my knees. A few seconds after I fell, my co-worker who sits right beside me (across the aisle in her own cube), turned around in her chair and exclaimed, “Did you just fall?” At this point, I was still on my knees. I sheepishly got up and exclaimed, “Yeah”. I wanted to cry. Not because I was hurt in any way, but because I was so frustrated. My co-worker, almost instantly after she asked whether I fell, exclaimed “That was a dumb question! Why else would you be kneeling in the aisle?” At this, I burst out laughing hysterically. I responded with, “Oh, I just felt the urge to pray!” A few seconds later, I exclaimed, “I was just taking a knee.” We continued to laugh hysterically about the incident throughout the rest of the day and even now. It was absolutely, hands-down the funniest fall I’ve ever had. That’s God. He turns frustration into laughter.

My second fall came this past Sunday in the afternoon at home. Again, I didn’t hurt myself. I was just frustrated with myself. I also hadn’t been using the walker or cane. I’d been using my skills as a “wall-walker” (touching the walls and allowing them to keep me balanced). Obviously, I need to refine those skills because, just like on Wednesday, I tried stepping with my left leg and foot and both of them cramped up and turned in. I sent a text to my mom: “Fell again. Didn’t hurt myself. I was in the hallway at the house and wasn’t using my walker or cane. My leg and foot just turned in and cramped up. Oh well.” This fall was nowhere near as funny as the one on Wednesday, but I am very, very thankful that I didn’t hurt myself either time. That’s God.

I have this weird thing that goes on with me. I’m not sure if it’s just me (it probably is!) or if this happens to other people as well. Sometimes, falling is the best thing for me. Often after a fall, I feel better. I know, that’s seriously odd, right?! It’s almost like I’m not afraid to fall after I’ve done it once. Weird, right? Or do others feel like this too? Sometimes, I almost feel stronger after a fall. I say this only to say that that didn’t really happen this time. ;) I still felt very off-balance, “weak” and not my regular walking self. I put weak in quotes because, my leg and foot are actually (maybe surprisingly?) not weak. I have pretty strong muscles. It’s the signal from my brain to my leg and foot that gets crossed. It’s frustrating, yes, but even in the falls, I see God. The fact that I have been kept safe in each fall – that’s God. I haven’t broken a bone or done major damage to myself in any fall. That’s God.

One good thing about having deep brain stimulation surgeries in February is that I met my insurance deductible by March. I paid a good chunk of change at the very beginning of this process and that helped a lot. I’m still getting bills from the hospital, but those are the ones that hit before my deductible was met. I am incredibly grateful for an HSA (health savings account) that I had built up a little and good insurance. I did elect to have a high deductible so that once it was met, I’d have zero out of pocket expenses, but it still comes as a shock when the bills come in the mail. What’s extremely shocking is the actual amount of money certain aspects of the surgery cost. When I see $53,000+, $18,000+, I thank the good Lord above for insurance! I am super thankful to the Lord for allowing me to see humor in it too. I was examining one of the more recent bills a little more closely. There were line items and on this particular bill there was a line item for “TWST DRILL, BURR HOL”. I almost had a panic attack as to how much 30 seconds of drilling a hole in my skull cost. BUT, I like to think that it costs that much, not because of the actual drilling, but because it didn’t kill me. Just the words twist and drill and burr and hole used together…that’s enough to scare me. The fact that it didn’t kill me to have this done, well that’s priceless. The brain is an amazing thing. Speaking of panic attacks (which I’ve suffered from since I was 10), the fact that I had awake brain surgery and didn’t have one inkling of even the beginnings of a panic attack, well, that’s just God. He allowed me to be way more fascinated with the entire situation then I was scared about it and I’m incredibly thankful for that!

I’ve been dealing with resetting my expectations for this deep brain stimulation process. I knew going in that it would take 3-6 months to see results. What I didn’t prepare myself for was the ups and downs of the process. I had it in my mind that it would be slow, yes, but I would only see progress. Ha! Not so much. There are many back-peddling instances and reminders that not everything is going to be rosy on this journey. It’s definitely a roller coaster ride with highs and lows, twists and turns. But in the midst, down in the trenches that’s where God shows up and somehow through His grace, I get up, shake the dust off and keep going. I’m reminded time and time again, that I’m blessed. I was speaking with a woman at church who is in chronic pain all the time. I realized how blessed I am. For all the frustrations and tears, I hardly ever have pain. Unless that is, if I fall and injure myself. But then again, I fell twice last week and didn’t injure myself once. That’s God. I hear countless stories of people way worse off than me, and once again I see how incredibly blessed I am.

Today, I got the opportunity at work to meet the “Listed Sisters” of HGTV: Lex and Alana LeBlanc. This is significant to this blog and to my deep brain stimulation story because this is the show that Jason, the nurse anesthetist that I had during the awake part of my deep brain stimulation surgery, was almost on. He was asking me all about my job and what I did (in an effort to keep me calm, no doubt!). When he learned I work for HGTV, he told me about how he and his wife almost got on the show, “Listed Sisters”. But their house was deemed “too good” to actually be used on the show. Well, fast forward to today when there was a meet and greet at work with none other than the Listed Sisters! When I met them today, I told them my story and they remembered Jason and his family. It’s incredibly funny to me how life has a way of circling back around. I HAD to get a picture with them, because, although they didn’t know it, they were a part of my DBS story. :)
L-R: Lex LeBlanc, my co-worker, Debbie, me, Alana LeBlanc

I know that God’s got a plan in all of this. I just know. I have faith. What trips me up (haha, see what I did there?!) is that I, myself, get in the way. So, I pray that His will be done and not my own. Here’s to another week of seeing what electrifying things God’s going to do!

Tuesday, April 12, 2016

Turn-It-Up Tuesday

It's Turn-It-Up Tuesday! I think that's what I'm going to start calling my Tuesdays from here on out until my DBS (deep brain stimulation) system is at the right setting so I can leave it on that setting and not have to turn it up. I just came up with the name this morning, so it's subject to change, if I think of something better. ;)

I'm now at 2.30 volts. I turned the device up this morning by .10 just like the neurologist said, but I really, really, really wanted to turn it up to its highest setting. I must not have been fully awake while trying to turn it up because I tried using my iPhone. The only problem was there was nowhere to plug the device in to the phone! Ha. Obviously, Steve Jobs didn't think to have my DBS system work with my phone and therefore trying to plug it in to the phone didn't quite work! ;) But I did eventually wake up and come to my senses and use the remote control.

This is how I program the DBS system. I have to put the device over the battery and then hook it up to the remote (below).
Yeah, I had to get the instruction book out again!

As for this past week, I didn't really see any changes, except for one and maybe it doesn't even have anything to do with the device. It could just be me being neurotic and obsessing about whether I see changes, good or bad! But, I'm documenting it just in case it is something so that I can remember to tell the doctor about it.

I've noticed (just a little) that I'm reading names like I'm dyslexic. It's only names (that I can tell so far) that I'm having this problem with.

Here's example number 1: My mom had 3 gift bags sitting on her dining room table and each bag was labeled with a name(s) on it. I read the name on one of them and asked her who Elise was. She just looked at me.

Mom: "Elise?"
Me: (pointing at the bag) "Yeah, who's Elise?"
and then it struck me....
Me: "OH!!! Elsie!!!" (my brother and his wife's dog...yes, my mom bought the dog a gift!)

The second example of this is when I tried reading the birth and wedding announcements as well as the obituaries in the Sunday paper. I was doing the same thing: mixing up letters and having to re-read names to get them right in my head. It's not like it's a HUGE disrupting event in my life. I come to the correct name in my brain within a second or two, it's just a little disconcerting. I was warned that this could be a side effect, but it doesn't make it any easier when it actually happens! I think it would all be a little more bearable if I was actually seeing progress in my walking. But, I'm not - yet. Can you tell that I'm the world's WORST at being patient? Ha! I've had many discussions this week with people about my being patient (or rather my being impatient!). It doesn't make it any easier! Which is why I know God is allowing this to be a painfully slow process so that HIS will (not mine) is done and I will learn patience whether I want to or not.

I got frustrated and sad this past week because Saturday through today have been really bad walking days. I didn't fall, but I had a couple of near misses on Sunday night. People say that it doesn't look like I'm walking any worse (or different), but I feel shaky all over. That's the best way I can describe it. But, this too shall pass and I must state that none of this is worse than anything I experienced before the DBS procedures. I had just hoped that I wouldn't be in the same exact place I was before the surgeries. Maybe I am and maybe I'm not. I'm not the doctor, so I'll let him decide. It's just frustrating because I so want to be on a moving-forward journey and not an uphill, valley, watch-out-for-that-rock, uphill, valley, watch-out-for-that-boulder, uphill, you-gotta-go-around-the-lake, watch-out-for-that-bear-in-front-of-you, uphill journey. BUT, I'm trying to look at it like an adventure, because what else could it be described as?! I'm not exactly sure what's going to happen from one moment to the next, but I shouldn't worry because after all...God's Got This!

A colleague of my Dad's (they were in the seminary at the same time), sent me a message over Facebook on Sunday and said that he used a piece of my blog in his sermon that day. His message was on the "Confidence of the Resurrected Life." I thought that being in his sermon was incredibly cool. I don't know exactly what he said about me, but I still think it's cool! ;) His message to me came at just the right time because I was getting discouraged. It's a very cool thing how God orchestrates life. He sends just the right pick-me-up at just the right time. I have been praying that God would use me and my situation to help others. So, thank you, God for letting me see a glimpse of that in the form of Pastor Tom's sermon. Thank you, Pastor Tom for being God's instrument (even if you didn't know it!), to encourage me when I needed a boost of confidence. And to everyone else, if you're ever in Kansas City, KS, you should visit Pastor Tom's church: Our Saviour Lutheran.

Other cool things...

Thursday night I decided to watch "Grey's Anatomy". I used to watch it all the time, but haven't recently, so it was a "God-thing" that I tuned in for this specific episode. I say that because one of the story lines in the episode was that of a DBS surgery. Pretty cool. Watching the episode though made me realize that the real DBS surgery is so much more intricate and marvelous and extraordinary then I had initially thought. Those that know me extremely well, know that I love, love, love television (and that's probably an understatement!) and that I'm extremely enthralled and fascinated by anything medical, but I'm telling you, when I watched that episode, I could only think to myself that TV, even with all of its bells and whistles and special effects couldn't even come close to getting the experience (both from the doctor's and patient's perspective) and the awe and amazement of it all, right. And that's a bold statement coming from someone who owns every episode ever made of "ER" and "House" and who loves anything and everything about TV. It's also not lost on me that the only way man and woman can ever have the brains to come up with something as intricate as deep brain stimulation is because God gave them the ability and the smarts to do so.

I'm pretty sure my hair is going to grow in curly again - which I'm super ecstatic about! It's growing every week and it's already got texture and slight curls, so I'm happy. It also stands straight up sometimes. Other times, I feel like I have a 1,000 cow licks. ;)

Do you know how extremely hard it is to take a picture of the back of your head? Well if you don't, you do now. It took me picture after picture after picture to get the above and below image. There were many pictures of just the ceiling or the wall or the floor. :)
Still not confident enough to go au natural, in public (outside of just posting it here), but my hair is growing!
Still love the wig. ;)

I posted a picture of myself to Facebook on Wednesday night after the wind almost knocked me out, to show everyone what the wind did to my wig. I thought, "oh, I'll get a few likes..." I posted the picture without really even thinking about it and then I went to church for an hour. When I got home, I noticed that I had more than 100 "likes" on the picture. I guess it was more popular than I thought it was going to be. But, seriously, wind + wigs do NOT mix and I'm extremely grateful that my wig just stayed on! :) If you were one to "like" the picture, thank you - it made me smile and I loved reading all the comments.

I think that's it for now. I've had some cool experiences in the last week, but I've also had experiences that just made me want to cry. But that's just life and I know I'm not the only one to experience highs and lows. ;)

I am extremely excited to see where God takes me on this journey. My life's story (as is yours) is one that not even the best writers on earth could write. It's only a story God could concoct. I'm very thankful and blessed that He's leading this journey, He's got me in the palm of His hand and I need only to hang on for the ride!

Tuesday, April 5, 2016

An Electrifying Tuesday

Tuesdays have been a favorite of mine ever since "House M.D." starting airing on them. Now I watch "Chicago Med" and "Chicago Fire" on Tuesday nights. Tuesdays are also good days because they're not Mondays. :) I exercise on Tuesdays (and yes, I like to!). Now, I'm adding another reason why I like Tuesdays: It'll be the day of the week that I turn up my DBS (deep brain stimulation) system. I initially had it turned on and programmed on a Tuesday which is why that day of the week was picked. :) Today, I upped the voltage in my device from 2.10 to 2.20.

I'll admit that I had to read the manual to remember how to do it, but I did it correctly! (I kind of think I'm going to electrocute myself or something. It's a little nerve wracking!)

Since this was the first time I got to turn up the DBS system on my own (I did it once in the neurologist's office), I thought I might forget to do it. So I wrote this note to myself last night and placed it on my nightstand.
I know most people have a wig and notes on their nightstand too, right?!

Just like when it was activated the first time, this morning I didn’t feel any different than I did before. In fact, even before I upped the system, my left arm and hand were feeling weak again. I so wish the healing of them were on a strict only-upwards path, but as Dr. I. told me, there can be little backslides in the healing process. Yet again, I’m being taught patience (although somewhat begrudgingly!).

I can’t even say with certainty whether or not I experienced any changes last week. I am hyper-aware and hyper-sensitive to anything going on in my body right now so there were two things that I did notice. Whether or not they are related to the DBS system is yet to be determined, but I’m writing them down so that the doctors can make that decision. :)

The first of these changes (as mentioned in my last post) is that I felt “electricity” in my left thumb. It feels like pins and needles, but not constantly. This is probably nothing, but may be something, so it's being documented!

The second of these changes is that on Saturday night, my left foot started hurting while walking. I looked and I have a callous on it right below my pinkie toe. OK, so again, this is probably nothing, but (in my wild imagination) maybe I’m beginning to use different parts of my feet to walk without even knowing I’m doing it?! Maybe?! I might be stretching too far here, but you never know! If that is the case, I think it’s totally awesome! If, not, then I’ll keep looking for other changes.

(Warning: for those that don't like feet or to look at feet, I have posted two pictures. So, just skip over them and please forgive me!)

I know this is disgusting, but it's real life. :)

I know this is disgusting, but it's real life. :)

A funny thing happened on Saturday. I blew a fuse in the house trying to change a light bulb. That wasn’t the funny part. The funny part was that I got it in my head that somehow I messed my DBS system up by holding the light bulb when the fuse made a popping sound and blew. I had to check my DBS system (for no other reason then my own sanity!), so I turned the remote on and to my relief it showed that my system was still on and OK. :) This is when I kind of started feeling bionic. When you have to check to see if you’re still “on”, that counts as being bionic. ;)

My friend, Kristen has kept me laughing constantly. We were talking on Facebook the other day and, well, here's the conversation.

My dad writes “Notes from the Pastor” which is given out as an insert to the bulletin we get on Sundays. He announces accolades that people in our church have achieved and calls out important announcements or events. In this week’s edition, I was mentioned. Thank you, Dad for concisely describing my situation.

As for my hair, it’s filling in! I can actually grab it and pull it now. I’m not quite brave enough to go out in public without my wig, but I'll go public here on the blog. :)
There have been comparisons flying around between my family members. They say I look like that toy magnetic guy whose hair stands straight up, Demi Moore, Anne Hathaway, a Chia pet and the list goes on. I DON'T like it this short. Some people could pull it off, but not me!
My hope is that by summer my real hair is long enough to where I don't feel embarrassed to go out without a wig. But for now, I love the wig.

It struck me today, that God is giving me a gift. To be honest, He's always giving me gifts, but the gift He's giving me right now is the gift of something to look forward to each week. He knows I'm impatient, but He's met me in the middle in this situation. He's given me the gift of Tuesdays. He's given me the hope that something electrifying (get it?! haha) will happen because of this surgery. My hope is that Tuesdays will be electrifying as I pray every day will be. I'm blessed beyond measure to have hope, to have faith and to have the promise that in His time everything will come to be just as He says it will be.