Friday, July 29, 2016

Today = 5 months (hair) / 4 months (stimulation)

It was either at the very end of last week or the very beginning of this week when it struck me that July 29 was on Friday this year and that’s when I started hatching a plan and building up my bravery once again. Today (July 29) marks 5 months since my last surgery – meaning it’s also been 5 months since the last time my head was shaved. Today is the 4 month mark of my deep brain stimulation device being activated.

I felt Friday was the perfect day for my plan to take place because it’s a little more casual at work. I only told one other person what I was thinking of doing, just in case I backed out of it. As it turns out, God gave me just enough bravery to go through with it: I went wig free. I definitely felt lighter! :) I’m still not too sure how I feel about my hair being this short, but it’s a lot more than I had back in February – so I just have to keep reminding myself of that!

My co-workers were AWESOME!!! They made me feel right at home and gave me (much needed!) compliments and encouragements. OK, that sounded cocky on my part – that I needed compliments. That’s not what I meant. What I meant was I am so self-conscious, it gave my confidence to hear the compliments and the encouragement and I’m so very thankful to those who gave them to me. I love how my co-workers and friends build me up. I hope I can return the favor and build them and others up. A couple co-workers even marveled at how I was able to contain my hair under the wig saying that I have so much of it. I don’t think I do, but I’m so happy they think I do! I’m happy that it’s coming back as the same texture as before too. I still love curly hair. ;)

The other big news of the day is that I turned the device up to 3.10.

I was going to wait until Tuesday, but I figured it has technically been a full week since I turned it down. Maybe I should have waited another week to turn it up, but I was getting impatient (this should come as no surprise to anyone if you’ve been reading along!). I did still have my doubts this morning about turning it up, but by 10:15am, I was ready. Sitting at my desk at work, I turned it up from 3.00 to 3.10 volts. Maybe this will be a happy medium. I felt like it was too much at 3.20. I thought that since I got my best results so far at 3.00, that that would do the trick, but it didn’t really help at all. I’m kind of wondering if I went down too fast. Instead of going down by .10 every week, I went down .20 in a day. Or that may not have anything to do with it! I’m searching for answers that might never get answered. I just want to be able to walk assistance free!!! I get so frustrated when I don’t see good results.

Wednesday, I made into and around work all day with the cane, but I asked my co-worker Debbie to walk out with me that night because I didn’t feel I could navigate the parking garage without help. I was right! I ended up holding onto her arm to make it to my car. Wednesday night, I was tired and didn’t want to think about walking, so I caved and used the walker to get in and out of church. I did use just the cane while I was in church.

Thursday, I ended up bringing the walker in with me to work. I didn’t feel brave enough or strong enough or have enough fight in me to tackle the parking garage. But, once I was inside, I used the cane exclusively – even going up and down stairs. Thursday night, Debbie rolled my walker out for me, but I forced myself to just walk with the cane. The parking garage still gave me grief, but I managed it with the cane and Debbie’s arm. ;)

This morning I used the walker once again to get inside of work. I used the cane once I was inside. There is a very, very, very fine line between having not enough stimulation and having too much. By 10:15am this morning, I was so over the “jumpy” feeling I was getting with my foot. I don’t know how else to describe it, but I’ll try. My foot just spasms up. It’s almost like it’s having a seizure or something because it’ll shake really hard, which of course makes me fall. This has been happening a lot this past week! I can’t stand that feeling because I’m not steady on my feet and I almost always fall. But then there’s the opposite feeling: I’m so stiff I can’t move at all. This happened after a 2pm meeting I was in today. I couldn’t bend my knee, I couldn’t lift my leg or foot. This is SO frustrating!!! My hope is that I just need to get used to this new level again and things will work out. I used my walker the rest of the day at work and to get to the car tonight. Walking can be so hard sometimes!!!!!

Here’s where I falter big time: in times like these, when I feel (at least in the moment) that things won’t get better, I worry about everything and I get into such a funk. I get moody and cranky and teary. I get mad and sad and “poor me”. I guess it’s in these moments that I just need to be by myself so that I don’t drag others down with me! This is the stuff I try to keep hidden from the vast population. Unfortunately for them, my family and my closest friends are privy to it and I’m sure they wish they weren’t. ;)

A thought I had this past week was I think I may be putting too much pressure on myself. I am my own worst critic. If I just let things come naturally maybe I’ll have better results! I want to be able to walk NOW, but maybe I just need more time. I get my hopes up and I want those steady upward victories, but this journey isn’t just a vertical rise to victory. It’s a winding, sometimes 2 steps backwards journey and I have to keep reminding myself, in God’s time it’ll all work out. And then I have to remind myself it may not work out like I want it worked out. God and I don’t always see eye to eye – ha!

I’ve had several moments this past week where I’ve just had to laugh because it seems so simple to walk, but the reality of it for me is nowhere near simple. We all have something in life to deal with – whether physical, mental, spiritual - we all have something. And if you haven’t had “your thing” yet – watch out – it’ll come! No one gets out of this life unscathed. I can truly say and mean every word of it that if this is the worst thing that happens to me in life, I’m exceedingly blessed. There are some of you I know that have it way, way, way worse than me, which is why I try not to complain in these blog posts. Sometimes that doesn’t always happen, so please forgive me if you’re one of the people that has it worse than me and then you read my blog and I’m complaining about something you only wish was your major problem.

Some lessons I've learned (or re-learned or am continuing to learn) this week:
1) Walking is hard
2) Writing is cathartic
3) I don't have all the answers
4) God does have all the answers

And on that note, I will end by saying once again that I am blessed. Even on the tough days, I know I’m blessed. The Lord will fight for me (and you), I need only to be still. Exodus 14:14

God’s Got This!!

Tuesday, July 26, 2016

Tune-In Tuesday: July 26

I didn’t turn up my deep brain stimulation device today. Last night, I had every intention to do so, but when I woke up this morning, I heard a still, small voice that said, “Wait”. I’m probably the least patient person in the whole universe, so this was NOT really what I wanted to hear, but I did feel at peace about it. I knew it was God. So, I wait.

Since Friday, when I turned the device down from 3.20 volts to 3.00, I’ve had good walking days and I’ve had bad, but at the end of each day when I’m lying in bed, I just can’t help but abundantly praise Jesus for watching over me another day.

I am happy to report that I walked pretty well the day and night of my grandmother’s 90th birthday bash. I had a blast with all of my family and friends and it was a wonderful time of celebration and honoring my grandmother.

The Sunday after her party, wasn’t so good walking wise. I started walking into church with just the cane, but I was having problems. My uncle (unbeknownst to me at the time) had pulled up to get my grandmother and he saw me walking and asked if I needed any help. I told him, thank you, but I wanted to do it by myself. So I continued on, until a church member and friend, Jim, came out of the church and asked if I needed help. At first, I said no, I wanted to do it myself. He said he understood and said he’d just walk beside me in case I needed him. Well, 2 seconds later, I needed him. :) I just grabbed a hold of his arm and he helped me the rest of the way in. The day’s walking didn’t get much better than that. I will say I was able to walk around my grandmother’s house after church pretty well because of her carpet. I went to the grocery store and had to hold onto the cart for dear life and then the rest of the day I spent trying to walk as little as possible!

Yesterday was a bad day, I won’t sugar coat it. I started walking into work with the cane and got a few steps in and knew it wasn’t happening, so I turned around and walked back to the car and got my walker. While I did manage to walk all day at work with just the cane (using the walker to get in and out of the dreaded parking lot), it was painfully slow and only when absolutely necessary. I even “cheated” and once again pulled up in my car to my mailbox, instead of walking to and from it. I was in a down mood yesterday because of all of this. I so thought that turning the device back to a setting I had pretty good results on would be the right thing to do, but I started doubting myself. So, I prayed.

I pretty much had it resolved in my head that I would turn up my DBS device by .10 and be at 3.10 volts – a happy medium (or so I thought) between having too little and too much electricity. But then this morning happened. I woke up singing the hymn, “How Great Thou Art”. I have NO idea where that came from, as I wasn’t listening to any music and I haven’t heard or sung that song in a long while. I also had the verse, “This is the day that the Lord has made, I will rejoice and be glad in it,” rolling through my head. Again, I have no idea where that came from. And then it struck, I DO know where both of those things came from. They came from God. Then in the midst of my singing (in my head) the song and reciting the verse, I heard a still, small voice (The Lord’s) saying, “Wait” and I knew exactly what had to be done. I had to wait. I wasn’t supposed to turn the device up today. I was supposed to wait. I exercised on my stationary bike and then took a shower. It was while I was in the shower that something miraculous happened. I do believe it was a sign from God telling me He still hears my prayers and He still cares for me. I was praying and asking the Lord to help me walk again assistance free and at the exact moment I prayed for that, I felt the muscles in my knee, foot and toes relax. It didn’t last too long, but just enough to give me hope.

I decided at that moment that today would be in God’s hands. EVERY DAY is in God’s hands – I know this, but today, I consciously gave it over to Him and you know what? I’m amazed. Not because today was perfect, (it was actually far from it) but because HE kept His promises: He never left me nor forsook me. He was there every tiny, painful, exhaustive step I took. He was there. He didn’t allow me to fall. He allowed me to overcome.

I had not decided before I got to work whether I would use the cane or the walker to walk in. I let God direct my path. When I got out of the car, I couldn’t find my cane anywhere and I started to panic that maybe I left it at my desk at work since I used the walker the day before. But, I found it! It had slid between the passenger seat and the door. It’s black, so I didn’t see it at first, but finding it only meant one thing: I was to use it. So I did. I stepped out on faith and prayer. And my worst nightmare (at the moment) came true. No lie. I got into the part of the garage where I have to cross over the lane where traffic comes through to get to the hallway that leads into the building and I got stuck. That’s the only way I know how to describe it. Several people asked me to explain what I meant and I had to say I was literally stuck. I couldn’t move my left leg or foot at all. It was like they were super glued to the floor. And to make matters worse: A car came at just that moment. I couldn’t look at it because if I did, I’d lose my balance and fall instantly. I’m not even sure how I got out of this predicament, but somehow God allowed me, ever so slowly to loosen up and millimeter by millimeter make it to the other side. The car, thankfully, had enough room to get around me. I made it. With the help of God, I made it. That’s the only way I made it. I got out of my car at 7:08 am. I made it to my desk at 7:21am. For 13 minutes, I was scared beyond measure, but you know what? God got me through. I didn’t fall. I got “unstuck”. God was by my side every step of the way. I had to leave work a little after 10am for an appointment. Instantly, fear struck again – the dreaded parking garage. My co-worker, Debbie asked if I wanted her to walk with me to my car. Everything in me was screaming, “YES!!!!!!” and yet what came out of my mouth, was, “no”. What?!!!! That was not me talking! That had to be God. So I walked with God. As I approached the parking garage, I literally said in my head, “OK, God, it’s just You, me and the parking garage.” I made my way to my car and literally my worst nightmare (at the moment) came true AGAIN!!! God, this is NOT how I had this planned in my head. ;) I got smack-dab in the middle of the path of on-coming traffic and a car came. This time, there was no place for him to get around me. He would have to stop and wait until I made it over. I thought to myself, “I can’t do this. I’m going to fall. I’m going to get hurt.” I’m pretty sure, I had the “deer in the headlights” look. And yet, God allowed me to walk. Better than earlier in the morning, but still slower than a snail’s pace. It was only God that got me to the other side without falling. It was also only God who made me stop this time and turn-around to see who was in the car. I didn’t know him (although I’ve seen him around). He stopped his car, rolled down his window and asked, “Do you need a strong arm?” I told him no – that I was trying to do it on my own and I thanked him. As he drove off, I wanted to cry, but not because I was sad or discouraged or embarrassed, but because of his loving gesture and how beautiful his words were to me. As I sit here tonight writing this post, it struck me how his words are GOD’s words. God asks, “Do you need a strong arm?” I do! And I’m so thankful He gives it to me willingly and lovingly. For it’s by His strong arm that I made it to the car without any falls.

I went to my appointment and walked in and out of it using just my cane. I was asked by a man walking out at the same time I was if I needed help, but again, I declined. I was right by my car as it was. The kindness of strangers blew me away today. As I got back to work, I noticed that the parking spot I parked in that morning was taken, so I parked in another part of the garage and walked, ever so slowly in to work. I made it – with God’s help, I made it! I walked around work all day just using my cane. Then it was time for me to leave for the day (a little early) to go to another appointment. I had problems, lots and lots and lots of problems. So many problems that two people came running to me in the parking garage to ask if I needed help. By the time they came, I was “this close” to my car, so I once again declined. The look on their faces made me think they didn’t believe I’d make it to my car without some kind of assistance, but you know what?! I did, just me and God and my cane, but out of all three of those it was GOD who got me there. I got to the car and exhaled. I walked in to my after-work appointment just using the cane and I walked back out just using the cane. I got home and walked to the mailbox. Painfully slow and awkward and it took me forever and when I got there, there was NO MAIL. So I “cheated” on the way back and walked in the grass, but I made it. Correction: I made it only because the LORD ordained it. Thank you, Lord!!!

I feel like Peter in the Bible. When he had his eyes on Jesus, he was able to walk on water. It’s only when he took his eyes off of Jesus that he began to sink. Of all the people in the Bible, I identify most with Peter. I MUST keep my eyes trained on Jesus and I'll be OK. It's when I look away from Him that I start to fall and fear and become anxious. So when I make it 4 TIMES - Did you read that?! 4 TIMES in one day walking in the parking garage without falling, I can do nothing but give all the glory to God!!!!!!!!!!!!!!!!

At the end of the day (and at the end of this blog post – I know you were probably thinking when will this entry end!) I want to shout it from the rooftops all over again. God is an AWESOME God. Even in the bad, GOD’s GOT THIS and I’m living proof.

Friday, July 22, 2016

The Sweet Spot

It's not Tuesday, but I decided to write another post any way because I did something I never in a million years thought I would have done: I turned the electricity in my deep brain stimulation device DOWN. Yep, you read that right, I turned it down. The past couple of days have not been very good in regards to walking. Don't get me wrong, I still haven't used the walker while being out (I'll admit to using it at home. I have tile floor and after walking with the cane all day, I'm tired at night, so I use it.), but Wednesday and Thursday led me to believe I had the electricity up just a little too much.

Wednesday morning, I tripped. I didn't fall, just tripped. It was actually rather comical. I was walking with my boss back from a meeting. I even walked up and down stairs! I was walking and talking with him when my co-worker, Leslie, walked by us. She said, "I know you don't like people watching you walk, but you're doing so good!", and right on cue....yep, you guessed it, I epically tripped. ;) It was totally NOT her fault. What I tried to do was look back (we were passing in the hall) to tell her thank you and that's when I tripped. Like, ran into the wall, tripped. :) But, I didn't fall! We all actually got a good laugh out of it. I told my boss that, obviously, walking wasn't automatic for me. Like I can't walk and chew gum at the same time, although in this case it was walk and try to look back at the same time.

Wednesday afternoon, I fell. Thankfully, not in front of anyone. :) I'd say I didn't get hurt, but I do have a nice bruise on my knee. Other than that, I didn't get hurt. I'm very thankful for that! What bothered me about this fall was I wasn't in front of anyone. Not that I don't fall when people aren't watching. I do, all the time! I just had no reason to be nervous, or anxious, or scared. This is kind of embarrassing, but also epically me (those that know me really well will get a huge laugh out of it!) so I'll tell it: I fell in the bathroom at work - haha. I was ENTERING the bathroom, so don't get any thoughts in your mind as to how I fell. ;) Thankfully (again), I was the only one in there!! It was embarrassing enough, let alone me having to explain to people who may have been in one of the stalls what happened! I just went down. Not in one of those graceful manners either where you just slide to the floor. No, it was a full on ugly, hard, wearing a dress and using a cane fall. I'm SO thankful this didn't happen outside work where a security camera could of caught it. It was NOT pretty!! Anyway, I jumped up, dusted myself off and went on with my day.

Wednesday evening, my ever-faithful friend and co-worker, Debbie walked out with me to my car in the "dreaded" parking garage at work (and if you're wondering why I call it that, read my last post. It really isn't all that bad.). I got out fine and headed to church. I parked in a handicap parking space closest to the side door. Normally, this door is always locked, however the previous Wednesday night it wasn't, so I thought that might just be a Sunday morning occurrence. I really wanted it to be unlocked, because it only took a few steps for me to get to it. But, alas, it was locked. I just thought to myself, "Well, God wants me to practice walking. I'll be fine with Him beside me." and walked to the main door. It was slow and somewhat scary, but I did it with just the cane. I also had a sweet woman stop me and tell me that she was praying for me. She said, "Stephanie, you don't really know me (we go to different Sunday morning services), but I hear about you through your grandmother and I've been praying for you and I just wanted you to know that." She's right, I don't really know her, although we do worship together on Wednesday nights, but she was so sweet to stop me and tell me she was praying for me. And she knew my name. That's HUGE in my book. To know and remember someone's name means you care. So I will never forget that moment when Dot stopped me to tell me she was praying for me! Thank you, Dot.

I was hoping all I needed was a good nights sleep on Wednesday night and I'd feel better on Thursday, but Thursday I woke up and knew something was off. Not even exercise could help. In fact, it was during my work-out that I noticed that my foot and toes were cramping up and curling in like before. My hand and fingers were also curling in and cramping up. I knew this was a sign of too much electricity, but I put that aside and went on to work. I made it into work fine just using the cane, but once in, I couldn't walk right to safe my life. And it was like that ALL DAY LONG. Medicine didn't help. Nothing helped. I didn't fall. I think that's only because I was EXTRA, EXTRA cautious. It was so bad though that at one point, Debbie asked if she should go get my walker from the car. I told her no. In my eyes, that would have been a failure (I know, it's not...that's just the way I was thinking yesterday). I made it through the work day. Debbie walked out to the parking garage with me and this time, I had to have her help to make it to my car without falling. I held on to her arm and we made it. Justin was there too to give moral support, although he said he wasn't against piggyback rides - haha. :) I made it to the car. I told Debbie that I kind of felt like a failure and she reassured me that I wasn't. I did what I had to do to function. I am SO thankful for friends who say just the right thing at just the right time! Thursday evening was lovely with dinner at my parent's house with all of my Mom's side of the family. They are all in town to celebrate my grandmother's 90th birthday. I walked fine on my parent's carpet (which has always been the case).

I prayed fervently last night on what I should do about the electricity in the DBS. The only hesitation I had about turning it down yesterday was the fact that my co-worker, Debbie said she had had a headache all day and was feeling a little off balance herself, which is not like her. We both wondered if something in the barometric pressure or the atmosphere had anything to do with both of us having an "off" day. I didn't want to lower the electricity if it was just something in the air that was messing with it for a day or two. So I prayed. I decided that if I woke up this morning feeling the same as I did on Thursday morning, I would turn it down.

This morning I woke up and walking was no better. So I prayed again and decided to turn it down. I went from 3.20 volts back down to 3.00 where I saw the most improvement. Almost instantly, my hand relaxed and that's when I knew I made the right decision - at least for now. I walked into work with just the cane. I had my usual problems, but nothing like the past couple of days. I didn't feel like I couldn't get up from my desk chair and walk around like I had the past couple of days. I walked out of work like I had been before the last couple of days. Thank you, Jesus! I still feel the "pulling" and "curling" and "twisting" in my foot, but I suspect it may take a couple of days to calm down a little considering it took a couple of days to go crazy too. ;) I'm very, very, very thankful that I have the ability to adjust the settings and "play" with them to see what suits me best. I've got to find that "sweet spot" where there's not too much nor too little electricity running through my body causing jerky, uncontrollable movements. It's definitely a balancing act and there is definitely a very, very fine line between too much and too little!!

I'll report back on Tuesday (if not before) to let you know how things are going. I'm still amazed at how many of you choose to read and follow along on this journey with me. Thank you from the bottom of my heart for all your love, encouragement and prayers. I am blessed by every single one of you!!

Tuesday, July 19, 2016

Turn-It-Up Tuesday: July 19

This morning I turned my deep brain stimulation device up by .10 and am now at 3.20 volts. This morning was also the first time I turned it up without having to read the directions again. I guess I’m finally learning how to do it!

Something I meant to mention in my last post but forgot is the goal of the deep brain stimulation (and me ramping it up every week). Obviously, the MAIN goal to allow me to walk without a walker or a cane. Another goal, however, is also to get me off of medication. I’m currently taking a lot and I take it four times a day because it wears off. It would be awesome if the deep brain stimulation is all I need.

The past week has been wonderful. Of course there have been moments of frustration and fear, but at the end of the day, when I’m lying in bed, I can’t help but marvel at what the Lord has, is and continues to do. I’m amazed.

This past Wednesday night, I went to church (as I normally do) and Dad preached a great sermon. Unbeknownst to me, a new series was beginning that night called “Where is God?” The title of my Dad's sermon was: “Where is God?: Walking.” Seriously. If that’s not a “God-thing” then I don’t know what is. I mean, I’m sure Dad has had this series planned for a while now with all the topics planned out as well. The VERY FIRST TIME I walk into church WITHOUT A WALKER (just a cane), the sermon is about WALKING. Dad had no idea I was going to walk in with just a cane. He had no idea, because I had no idea. Haha. I love, love, love God’s timing!!!!

In the same vein, it seemed all week lines from songs jumped out at me. During work-outs, I’ve been listening to country singer, Kip Moore. He has a song titled "Faith When I Fall" and in that song there's a line that I absolutely love: "Give me strength when I'm standing and faith when I fall."

The songs sung at church this past Sunday also jumped out at me. So much so that I had to tell our worship leader that every song we sang was “spot-on” what I needed to hear and sing. We began by singing “Stronger”. Here's the chorus:
“You are stronger.
You are stronger
Sin is broken
You have saved me
It is written
Christ is risen
Jesus You are Lord of all”

The next song we sang was “Come as You Are” by David Crowder (my absolute favorite “new” song we sing at church). It’s so good, I have to give you ALL the lyrics (not that the other songs aren't equally as good, I just felt ALL the lyrics in this song spoke to me):
"Come out of sadness
From wherever you've been
Come broken hearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow
That heaven can't heal
Earth has no sorrow
That heaven can't heal
So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You're not too far
So lay down your hurt
Lay down your heart
Come as you are
There's hope for the hopeless
And all those who've strayed
Come sit at the table
Come taste the grace
There's rest for the weary
Rest that endures
Earth has no sorrow
That heaven can't cure
So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You're not too far
Lay down your hurt
Lay down your heart
Come as you are
Come as you are
Fall in his arms
Come as you are
There's joy for the morning
Oh sinner be still
Earth has no sorrow
That heaven can't heal
Earth has no sorrow
That heaven can't heal

We also sang “How Great is Our God”:
"How great is our God
Sing with me
How great is our God
And all will see
How great, how great is our God"

Then we sang “Lord I Need You”. Here are my favorite lyrics from that song:
"Teach my song to rise to You
When temptation comes my way
And when I cannot stand I'll fall on You
Jesus, You're my hope and stay"

Another cool thing that happened this week was walking around the grocery store. I never thought I’d say that! While I still parked near a shopping cart and used the cart the entire time, I have never felt so sturdy on my feet. It made me realize how much of a struggle I really have had.

I did two things this past weekend that I don’t normally do: I went to a baby gender reveal party where I wasn’t sure I’d know anyone except the couple having the baby (actually, in this case it’s babies – they are having twins!) and I went tubing on the lake. I am exceedingly grateful I did both!!

I had a blast at Brad and Samantha’s party. I knew one other person that was there until another couple came later on. Going to this party took me out of my comfort zone because I'm highly self-conscious about using the walker and/or cane, but I ended up having so much fun and got to meet some really great people that I wouldn’t have gotten to meet otherwise. I am so very happy I went. Thank you so much, Brad and Samantha for inviting me!!

My maternal grandmother turns 90 on July 21. (As an aside, my paternal grandmother turned 90 on June 10). Because of this, out-of-town family is arriving to celebrate with a big birthday bash on Saturday. My Michigan aunt, uncle and cousins have been here since last Friday night and they brought with them their boat. One of the activities you can do with their boat is go tubing. I told them I wasn’t going to do that and I’d be fine just riding on the boat. However, Sunday morning I woke up with a change of heart. The whole family was going to go out on the boat that afternoon after church and I decided that morning that I wanted to try tubing. I am SO happy that I tried it because it was so much fun. I had the absolute BEST time. It’s definitely a memory that I will hold on to for the rest of my life. It was seriously that much fun!

As the above two examples suggest, I am currently working on being brave. In the past, I’ve always thought that once I’ve done something one time, I’m good to do it again. While I still believe that mostly, the parking garage at work has proved a challenge. I’ve walked in and out of it every week day since my last post (and a couple of days before that too), using just my cane, and I still haven’t “conquered” it. I still get butterflies in my stomach. I still worry that I’ll fall. I still worry that I’ll get “caught” trying to pass over the lane that traffic comes through on and then make a fool of myself by either falling or just freezing. On Sunday, Dad correctly identified the way that I walk – carefully. Walking is a deliberate action on my part. It’s not automatic and flawless. I still have the potential to fall. However, I am FORCING myself to walk in spite of my fears. I don’t expect accolades or “good jobs” from others for doing this. I mean, this is what most people do every day – they walk. ;) It’s just that if you only knew how terrified I am to walk at times, you’d understand more why I rejoice as much as I do when I make it somewhere without falling. All glory goes to God for keeping me upright! I pray every morning that God will make me brave, keep me from falling and that I will soon be able to walk on my own two feet, assistance-free.

This past Sunday was my first Sunday walking into, around and out of church without my walker. I was ecstatic. I was even more ecstatic when I walked up to communion and back to my seat without holding on to Mom (or anyone else). In fact, as I sat back down in my seat, I turned to Mom and declared, “I did it!". I should of actually said, "God allowed me to do it!", because that's the truth! I still force myself to walk to the mailbox and back every day. Some days I'm brave. Some days, I'm not so brave. Every day I trust in the Lord.

Surely, I'll get to the point where walking doesn't terrify me anymore, right?! ;) It seems so stupid to be afraid to do something most people take for granted they can do without thinking. But, my faith in God is growing by leaps and bounds. Every little victory, I credit God for. Every little victory adds up to major victories. If it were up to me, I’d still be using the walker. But, it’s not up to me and so I pray a million little prayers and step out on faith. God's Got This!

Tuesday, July 12, 2016

Turn-It-Up Tuesday: July 12

Exciting. That’s how I would describe this past week. But remember, exciting can be both good and bad and I’ve experienced both! Haha. :)

If you read my last post, you already know I had an epic experience and it makes me so very, very happy to report that it's continued with a few curve balls thrown in.

Just to get a little "housekeeping" out of the way...I'm back to titling my posts "Turn-It-Up Tuesday". I turned my deep brain stimulation device OVER to "frequency B" last week and it worked wonders. I'm still in awe of the miracle(s) God performed and is still performing. This morning, I turned the electricity up by .10. I am now at 3.10 volts.

Why, you may ask (or you may not, that's fine too!) did I do that if I was having such great success being at 3.00 volts? My answer is, although, I did experience (and continue to experience) great success, I'm still not 100% "there". I can always take the electricity back down, but since I'm only going up by .10 every week, I want to see if I can garner bigger and greater results than I already have. I think I've mentioned this before, but I'm a "go big or go home" type of girl, so I'm all about seeing the extent to which I go and find greater results then I even have now. So that's why. This week, I'm finally at that stage in hair-growth, where I see progress! It's really starting to fill in, so I'll post a picture here, but you'll still probably see me in my wig until the day I feel I want to go with out it.

This is without any styling or hair gel. It actually is curly if I scrunch it.

Now, back to this past week. I told you about my Wednesday and Thursday in my last post, so I won't recount those days (I'm already long-winded as it is!). I will say, Thursday I got into work flawlessly. Getting out of work, I had a bit more difficulty. Friday morning was also difficult as was Friday night and Monday morning. By difficult I mean, I was WAY over-thinking walking and when I way over think it, I can't walk. My leg and foot get tense and cramp up and I end up having major difficulties or falling. And I did have difficulties. But you know what? I did it anyway. I walked WITHOUT the walker anyway. I may have started and stopped a 1,000 times. I may have held people up in their car while I crossed over the pathway to the door. I may have stumbled a little bit. People may have stopped and asked me if I was OK or if I needed help. I may have been embarrassed, but you know what? At the end of the day, God allowed me to walk in and out (and around) work, without falling ONCE and only using my cane!! I took pictures today of the parking garage at work to give you a sense of how far (actually, to most people it would be how short!) a distance it is.

This doesn't give the whole picture, it's a little farther to walk then what's shown here.
My car (not in the picture) is to the right behind that wall. There is a slope upward from this vantage point. I have a lot of problems walking DOWN slopes, but am pretty OK walking UP them.

My co-worker Gerard took these pictures of my walking in, you know, just to document the occasion. It's the little things in life!

And to those who are "medical-minded", I know I'm holding my cane in the wrong hand. To those that aren't "medical-minded", you are always supposed to hold the cane and walk with the cane in the opposite hand/side of your injury/disability. To tell the truth, I switch hands/sides often. I guess I'm ambidextrous when it comes to that. Sometimes, I just feel a lot more stable with it in my left hand. This feature, I have in common with Dr. House - haha. I do what allows me to feel the most comfortable, although it might not be what medical professionals advise!

Each day last week, my co-worker, Debbie walked with me to my car (going home, in the morning's I was on my own - ha!). Yesterday, though, I wanted to see if I could do it "all by myself". Haha, I sound like I'm two. So, she was staying late anyway and told me to text her when I got to my car. I did make it to the car WITHOUT falling, but I wasn't alone. I've never prayed so hard in my life!!! God was with me. Also, another co-worker, Susan, was walking out at the same time I was. She asked if I needed help and I said no. While she didn't physically help me (like me leaning on her...she wasn't even standing anywhere near me!) she did end up helping me greatly by making sure there was no traffic coming!!! When I got to the car, my hands were drenched in sweat. My feet were sweaty too. My heart was beating out of my chest, but I was safe. God allowed me to get to my car without falling. I sent Debbie a text that I made it and she responded: "YAY...another milestone! You should be proud of yourself. I am so happy for you and proud of you." This has been the sentiment of ALL my co-workers and ALL of my family and ALL of my friends and for that, I can't say "thank you" enough. I hope that I get to "pay it forward" and encourage, root-on, cheerlead and lift someone else's spirits like you all have done for me.

One of my biggest hang-ups is that I hate, well, hate is a very strong word, maybe I should change that to "strongly dislike" people watching me walk. It sounds so silly, but it's the truth. I get all flustered and it makes me nervous. It makes my muscles tense up and I feel like I'm going to fall. It's quite the hang-up to have when you start walking with just a cane after years and years of walking with the walker, because EVERYONE, when they notice that the walker is gone, stops to congratulate you. I do LOVE that people are so kind and happy for me though so I try not to let it bother me. I don't even like letting my doctors watch me walk, that's how much I dislike it! I find this fear of mine quite comical at times, because in my youth and even in my 20's I wanted to be an actress. I wanted to be famous. What makes me laugh is that if I were famous there would be people all the time watching me walk. So maybe being famous isn't all that it's cracked up to be!

To say this past week was a bed of roses is to be outright lying. For all the good, there also comes bad. I fell twice. They were silly falls and I didn't get hurt, but they were falls nonetheless. One was on Saturday in my bedroom, on the carpet. There were plenty of things to hold on to. But instead of holding on to the nightstand, I cleared the nightstand. Yep, alarm clock, medication, TV remotes, pictures - I cleared them all off! Nothing broke (either contents from the table or myself!) and I ended up wondering how in the world I fell in the first place! Then, Sunday, I fell as well. Sunday, I chickened out a little bit. I debated for a long while on whether I should take my walker in to church or just use the cane. I ended up taking them both in. I was so frustrated at myself for "giving in", but I was scared that I would get halfway across the parking lot and get "stuck". I park in the handicap space and it's NOT FAR at all into church, but I still chickened out. I know that people would have helped, but I ended up taking the walker in. However, once I was in church, I just used the cane. I say all of this, because after the (what I thought was) great walking inside, I was loading up the walker and the cane in the car and somehow after they were all loaded, I lost my footing and fell. Right there by the car. Again, I was unhurt, but left wondering, "How in the world did that just happen?".

I'll admit, there have been times and instances this past week where I've been scared. I never knew I was "scared" to walk, until this past week. How easy is it just to walk?!! But for me, it was a chore that left me completely exhausted at times. I'm having to re-learn stuff and I'm downright scared/anxious/nervous a lot of the time. I have been thinking about this though and I've come to the conclusion, I'm not scared to walk, I'm scared to fall. But then again, what happens when you fall? You (barring any major injuries) get up, wipe the dust from hands and move on. That's so much easier said/typed/read then it is to actually do. I'm learning to fully and fervently trust in the Lord. There's a reason you learn to walk when you're still an infant/toddler. :) You don't know to be scared or fearful of anything. But, God's teaching me new things every day. I'm learning to revel in the small victories. You know what's cool? The thing I thought was so hard and I was so fearful of the day before turns out to be the easy thing the next day.

There have been moments of pure, delightful discovery for me this past week. My co-worker, Debbie said that I'm allowing her to see things in a different light and be thankful for the things she takes for granted every day. Here are a couple of my new discoveries/new experiences:
- I get to use the "small" stall in the ladies bathroom. Since I don't have my walker, I can fit in it and don't have to use the handicap stall. (That may have been too much information, but hey, it's one thing I've discovered!)
- I walked up and down the stairs today at work. I never knew there were 3 sets of stairs going from the 2nd floor to the 3rd! I also never knew that there is different carpet on the stairs then there is on the floors. Debbie documented the occasion for me.

- I'm walking to the mailbox and back daily. I did say this in my last post, but I haven't done this "simple" task in about 10 years.

Just in case you're wondering what's physically changed in me, I'll tell you. :) Since the beginning of this dystonia journey, my foot has curled in. In fact, that's the very thing that lead my Internist to declare that something was physically wrong with me. As the years progressed, the curling of said foot only got worse. Also, my toes started curling under. I had spasms in my leg and foot too. Wednesday, when I woke up, all of that was gone. My foot isn't curling in or drawing up anymore (well, that is when I'm not nervous. It still does this a little when I get anxious.) My toes lay flat. I don't have spasms. Everything is quiet and normal. THIS is God. Yes, it's the deep brain stimulation working, but GOD ordained such things to be in existence. I am ecstatic.

The picture on the left was taken in 2010. The picture on the right was taken today 7/12/2016

Where there once was no hope, there is now. Where my faith was shaken, God's allowed it to be restored. I'm speechless to the mercies He's allowed me to experience. I can't (nor do I want to) wipe the smile off my face. Yes, there have definitely been some very hard, not-so-fun, scared-out-of-my-mind moments in this past week, but at the end of the day, when I'm laying in bed, I can't help but marvel and praise the name of Jesus. I want the whole world to know what He's done and continues to do in my life. I want the whole world to know Him.

God's Got This!

Thursday, July 7, 2016

Shouting From the Rooftop

Epic. That's the only word I can think of to describe the past couple of days in regards to walking. In my last post on Tuesday, I revealed that I changed frequencies in my deep brain stimulation device. Yesterday, when I woke up, I got this CRAZY idea that maybe I could walk around work with just a cane. So I used my walker to walk into work, but I also brought my cane. I got to my cubicle. I left my walker there and I WALKED (with the cane) to the break room to drop my lunch off. Then I walked to back to my cube. Later, I walked to the bathroom and back. Then I walked to my boss's office and back. I walked to meetings. I walked to other co-worker's cubicles. I walked with out a walker!!! All day. 8:30am until 5:30pm. I walked.

In case you don't know this about me, I'll let you in on a little secret: I'm stubborn. Like to a fault sometimes. But every once in a while, my stubbornness is a blessing. After that first jaunt to the break room and back, I willed myself to only use the cane to get around. Believe me, by early afternoon, I wanted to throw in the towel and use the walker. But the stubborn side of me wouldn't let me do it. The only time I used the walker on Wednesday was to walk in and out of work.

Co-workers were stunned. I got comments all day like: "Oh my gosh! Where's your walker? You're doing so great!" If I haven't mentioned it before, I'll mention it now: my co-workers are the absolute BEST!! They don't stare. They don't judge. They support. They cheer me on. They love. And for that, I'm speechless. Knowing how much they care brings me to tears. I could never in a million years ever repay them for what they are to me and what they've done for me.

Walking yesterday was NOT PRETTY!! I mean sometimes, I was going along just fine and then I'd just stop. Mid-gait. Just stop. My brain had to catch up with my legs or my legs had to catch up with my brain. I stumbled once (but didn't fall!). I think the stumble actually made me walk better. It was like my brain and body were saying, "You got the stumble out of the way, now walk!!". In fact, I didn't fall once. Not once!!! I got home last night and got a crazy thought in my head: I needed to walk to the mailbox and back. I know, crazy, right?!! You have to understand: I have not walked to the mailbox and back in I'd say about 10 years. At least not without the walker. I usually just pull up in my car and get the mail. I took one step out of the garage and heard a clap of thunder. I prayed, "Lord, if you want me to walk to the mailbox and back, please, please, please keep it from raining, thundering and lighting long enough for me to do it!" And you know what? He did! I SO wanted to take the "easy" way out and walk on the grass. Yes, just like sand, grass is quite easy for me to walk on. But you know what? I didn't walk on it last night. I spent the entire time on my driveway or on the street. It was slow. Steady sometimes, not so steady other times, but I made it to the mailbox and didn't fall. Then I made it back to the garage and didn't fall!!! You can't possibly know how epic this was to me, but God knows. I was giddy. I walked to the mailbox and back with no walker!!! I walked all day around work with no walker!! Grant it, I didn't walk far - either at work or to get my mail, but I don't even care. I did it!! And yet, I didn't do it. I know without a shadow of a doubt, none of that would have been possible without God allowing it. None of it. It wasn't me walking, it was God leading and me having faith as small as a mustard seed. In some respects I think yesterday was more mentally exhausting then it was physically. When I got home last night, I realized the date: July 6, 2016. There's nothing really monumental about that date, except for the fact that two months from that date on September 6, 2016, I return to Vanderbilt for my 6 month post-op check-up. I LOVE how God works like that!

So, as epic as Wednesday was, today was just as epic - maybe even more. I walked into work with just my cane. Yep, you read that right. I left my walker in the car. I parked in the parking garage at work. The garage is on the opposite side of the building in regards to where I sit. So, in essence, I walked the entire length of the building to my seat, with just my cane. No walker. I have to let those words and the meaning of them sink in. No walker. I walked. I used the cane, yes, but NO WALKER!! I didn't fall. Again, the magnitude of this is epic to me. Thank you for indulging with me on just how epic it is. My co-worker Jeremy was the first in after me. I asked him to come to my cube. He did. I asked him if he noticed anything missing from my cube. He looked around a few seconds and then it hit him: no walker! I have so much room now in my cube! I had to take a picture.:

As epic as the last two days have been, I debated on whether to write this post. I mean, I had a harder time walking out to my car this evening. I did it (thanks, Gerard and Debbie for walking with me!), but not without some difficulty. It's not "perfect". It's not like I've ditched the walker for good. Maybe I'll be able to walk into work again tomorrow with just a cane. But then again, maybe not. I have a feeling that I'll have epically bad days in my future. That's just life. I know this journey. I know that it hasn't just been smooth sailing from day one. There are backslide days. There are days when I have to (what feels like) relearn everything I thought I'd learned the day before. But for TODAY (and in this case yesterday too!), I have had experiences in which I am so, so very happy about, that I can not NOT share them with others.

I was talking with another co-worker and it hit me: I MUST tell you all about my success because you've been there for the times in which I haven't had success. I owe it to you to tell you about the good things in life, the sweet moments in time that God so graciously gives me, even though I don't deserve them. I owe it to you because of the prayers you have prayed for me and the encouraging words you have spoken to me. Some of you have seen me at my absolute worst and yet you still love me. Thank you! Thank you for your continued prayers. Thank you!

I'm not writing this post to brag (but "if I must boast, I will boast of the things that show my weakness." I Corinthians 11:30). I'm not writing this post to say "look at me". I'm writing this post to glorify God. I'm writing it to boast in Him. "Therefore, as it is written: "Let the one who boasts boast in the Lord"" I Corinthians 1:31. For it is HIM who has allowed me to have these past two epic days. I completely understand that He is the one who gave them to me and He can also take them away. God knows the private conversations I've had with Him. The bargaining I've done with Him. (And yes, I know that's not right, but I've done it). In those private prayers with God, I've told Him that I will "shout it from the rooftop" how wonderful He is. So this is my shout. Today was an epically good day. Today, I walked without a walker. Today, I am celebrating and praising the Lord for His kindness to me.

Yes, this is my rooftop shout to all the world: GOD'S GOT THIS!!! He is MIGHTY and SOVEREIGN. GOD'S GOT THIS!!!

Tuesday, July 5, 2016

Turn-It-Over Tuesday: July 5

Today’s blog entry isn’t titled "Turn-It-Up Tuesday" nor is it titled "Tune-In Tuesday" and that’s because neither title fit. ;)

This past week, I once again realized that lots of stuff can happen within a 48 hour time period. The “stuff” I speak of left me wrestling with myself last night. Today marks the end of the 4 week “fast” that Dr. T. wanted me on. I stayed at 4.00 volts for 4 weeks. Knowing this last night, gave me pause, because just this past Saturday and Sunday “stuff” happened.

On Saturday, God gave me courage. I decided to practice walking. I was at church from 11am-1pm. I walked in with the walker and the cane, but once I was in the Fellowship hall, I decided to put both the walker and cane aside in an adjoining room and see if I could walk. The Fellowship hall is carpeted and there were plenty of tables and chairs I could hold on to if I needed them, but ya’ll, I walked without the cane or the walker for 2 hours. It’s not the first time that I’ve been able to walk without a walker or cane. I do walk like that at my parent’s house on their carpet and there’s the beach, but I must admit, I was still pretty proud of myself.

Sunday, I wanted to prove to myself that the day before wasn’t a fluke. My niece was baptized and I was one of her godmothers!!!! Her other godmother was my sister-in-law’s sister, Anna. Anna and I were sitting on the front row. I told her I was probably going to take my walker and prop it up against the back wall. She asked if I wanted her to take it back there for me. Usually, when someone asks me this, I say yes, but Sunday, I told her no. I needed to practice walking. So then she asked me if I wanted her to walk with me and I said yes. I dropped the walker off and made the treacherous (haha) walk back to the front row. It wasn’t without struggle and I eventually started grabbing the end seats on every row to steady myself more. It wasn’t pretty, but I did make it to my seat without falling and without using the walker. I did use the cane, Anna and the seats, but I made it! I told Anna, I thought the reason that I was having more trouble was that people were watching me this time. She responded with, “But you know these people.” Exactly. I think I was more nervous because I do know these people and they know what I’ve been through and what I’m waiting on. Anna and I came up with a “plan” on how to get into our positions for the baptism. We only had to walk a couple of steps, but I was still nervous about doing it. We decided that she would walk beside me and her arm would be available if I needed it to balance myself. I made it up to the baptism and back to my seat with minimal problems, although I was much stiffer and my walking more calculated on the way back to my seat then it was on the way up to the baptismal font. After church, when we were all hanging out waiting to get pictures made, I walked fine without a walker or a cane. What gives?! There were more people around to grab ahold of if I needed to. ;) After the service we all went over to my brother and sister-in-law’s house for lunch. I was fine walking into their house and for the most part walking around their house, but I found trouble navigating their stairs. Walking up the stairs, I have no problems. Walking down the stairs, I have major problems. I also had a hard time walking out of their house. I think that was due to the fact that I sat for too long and was stiff.

I wrestled with myself last night though because I did see progress over the weekend. I wondered if I gave it one more week at 4.00 volts would it be even better. Or should I e-mail the doctor and ask him what to do? Or should I call Mom and Dad and get their opinion? What I ended up doing was none of the above. Instead I prayed about it. I prayed that God would give me a clear answer. Then I used these blog posts I write to look back and make sure I really was at the four week mark. I was. I also looked back to see what voltage I started the deep brain stimulation at. It was at 2.10 volts.
I woke up this morning and knew exactly what I was going to do. I couldn’t get the thought “just take a leap of faith” out of my head. I knew that was God. So, my leap of faith was to change the frequency on my deep brain stimulation device. Where I had started out on the “A” frequency, I was now going to try the “B” frequency (thus “turning it over” as in the title of this blog entry.). I had asked Dr. T. what the difference in the frequencies was. He said that frequency “B” accessed more of my brain and gave more stimulation. I thought I’d start out at 2.10 volts since that’s where I started the “A” frequency, but when I switched to “B” it was automatically already set to 3.00 volts, so I left it there.

I feel confident that this will work. If it doesn’t, I can always go back to the “A” frequency and be happy with the little improvement I eventually saw. But, I KNOW it’ll work. God’s got this. I did my part. I have faith that God knows what He’s doing. I have faith that I will walk again assistance free. Thank you for all the continued prayers and love. I’ll keep everyone up to date on what God’s doing!