Tuesday, February 28, 2017

Turn-It-Up Tuesday: February 28

This past week, walking was a challenge. There’s no denying that. But now, being on the other side of last week, I can look back and declare that God remained faithful through every second of it. Every second. He never left me. I struggled, yes, but I didn’t fall once. That's how good God is. I made it to this week. God is good!

Unfortunately, this past week, I’ve been very, very impatient. So much so, that I let my impatience run a little wild. That was evidenced by how many times I adjusted the electricity in my deep brain stimulation device. I couldn’t wait until today. I went from 3.60 volts last Tuesday, February 21, down to 3.50 volts on Thursday, February 23, back up to 3.80 volts on Friday, February 24, and up to the highest level I could go (4.10 volts) this morning only to take myself back down to 3.90 volts this afternoon. I warned you, I was impatient. ;)

I am very thankful that I can adjust the electrical settings on my own through a remote control. It was on Friday that I adjusted the level of electricity I was on, while I was sitting at my desk at work. I did the same thing today - turning it down, while I was sitting at my desk at work. The inner workings of our bodies and the brain-boggling way that God has provided for man to understand how the brain works and to be able to come up with processes like deep brain stimulation continue to awe and amaze me! I mean, for me to be sitting on my bed or at my desk at work or in a grocery store and be able to change how much electricity is going through my brain and to see how it immediately takes away adverse side effects of the actual stimulation, is just utterly awe-inducing.

This past week, I was impatient and frustrated and just plain worn out, but, you know what? Today, I’m recharging. I'm reminded that God's mercies are new every morning. Joy comes in the morning. So, I’m joyful and grateful. God is so, so good.

God shows His mercies in His perfect time. His perfect time is rarely ever my perfect time, but I trust that He knows best! As I was struggling with impatience and frustration this past week, I received the sweetest gifts from people who probably don’t even know they blessed me in the way they did.

Yesterday, I got a call from a co-worker (who’s not in my department). She asked about a work thing, but then, out-of-the-blue, told me what an encouragement my blog was to her. I was floored. I was humbled. I was so ever grateful to hear her words. She said that she was blessed by my posts. Out-of-nowhere. That’s God’s perfect timing!

Another co-worker (again, someone who’s not in my department) said that she was so blessed and encouraged to see me walking. We then started talking about how it's in the process - no matter how brutal or long it is - that we find God's blessings. It’s in the process that our faith grows. If everything were hunky-dory (haha, I don’t know where that word came from in my brain, but I’m using it!), we wouldn’t long for Jesus like we do when everything’s falling apart. It’s only in the process that our faith grows deeper and our joy comes to fruition. My conversation with this co-worker was exactly what I needed, when I needed it. That's God's perfect timing!

I still have lots of fears. I’m human, so I’ll always have them, but during this journey, this process, God continues to show how ever faithful He is. He continues to love me when I’m unlovable. He continues to bless me when I don’t deserve it. He continues to surprise me when I least expect it.

Yes, the past week wasn’t one of my best, but it was better than where I was last year at this time. I'm growing. I have good days and bad days. I have days when my walking is wonderful. I also have days when walking is less than wonderful. The same goes for my faith. I have days when my faith is strong and days when my faith wavers. But God never wavers. He is strong. He is able. He is everything.

I'll close with this: The Deep Brain Stimulation process requires 3 surgeries (at least mine did). My final surgery was on February 29, 2016 - LEAP Day. This was purely coincidental in the eyes of the world, but I know, it was divine. I believe it was God's humorous way of reassuring me that everything would be OK. It was His way of confirming that He's got me in the palm of His hand and in His perfect timing, I will LEAP again. God's Got This!!!

Tuesday, February 21, 2017

Turn-It-Down Tuesday: February 21

God shows up in amazing ways! My walking wasn’t all that great this past week, but I marvel at how God works. I’m a little stubborn (ha – "little" may be a huge understatement!) so I refuse to use the walker or the cane and God still keeps me from falling. That's an amazing God!

For the past three Sundays now, I've struggled walking in the parking lot getting inside church, however GOD shows up every single time. For three weeks, He has sent someone to walk beside me. I know God’s always by my side, but He sent someone to physically be there with me as well. For the first two Sundays it was my friend, Tina. This last Sunday, it was my friend Crystal. I don’t know if they truly understand what an answer to prayer they were and are. If not, and if they are reading, I hope they do now. Thank you, Tina and Crystal. Thank you for walking each painfully slow step with me – letting me walk on my own – but being there “just in case”. I’ll never forget that you walked with me.

I also really struggled getting into work on Monday morning, but again God showed up. This time it was the reverse of Sunday. ;) He showed up by not letting anyone else be around while I walked in. I went at my own pace (slower than slow) and made it with His help. Sometimes, I need God AND people and other times, I just need/want God. He knows this!! I really do stand in awe of how He works.

I sometimes wonder what’s on security camera footage at work though. Thankfully, to date, I haven’t fallen in front of a camera (that I know of), but I do wonder if security thinks, “Why is she walking so slow!” I know I can’t worry about this stuff, but it does cross my mind! I mean, I am so slow, I’m pretty sure a tortoise could win a race against me. Haha. Oh well. That’s what makes me unique, right?!

This was the scene in my bedroom this morning:

The struggle is real, people. :) I have a cut on my toe that's just as stubborn as me and won't go away! I’ve bought every bandage, in every size and the cut will not heal. I found some old Neosporin and put that on, only to read that it expired in 2012. ;) This morning I found a triple antibiotic ointment that I used last year to put on my scars from the deep brain stimulation surgeries. It, thankfully, doesn’t expire until 2018 so I applied it. The thing is, it’s extremely hard to keep a bandage on my toe because of the toe it is on. My toe also swells because of the cut and also because of the rubbing it does against shoes. It took several tries to this morning to get a bandage to stick on my toe but, finally...success:

The cut is why I have momentarily boycotted wearing shoes when I’m at home, so that it can heal. In fact, these are what I’ve worn to work-out in the past couple of work-outs:

Don’t laugh (OK, laugh all you want, because it is funny!!), they actually work because they have a sole on them. My tennis shoes were hurting and I tried flip-flops and those didn’t work out. (Just as a reminder, I ride a stationary bike, so it’s not like I’m doing Pilates or Zumba or running half marathons in house slippers!) The cut is stubborn, but I'm more stubborn. I am determined to do everything I can to get it to heal. My walking may even improve drastically because I won't be worrying that my toe is going to hurt.

As for my actual walking, I noticed that this past week was nowhere near as good as the previous two weeks, so I decided to take the electricity down a notch. Awkward movements in my hand and problems walking led to this decision. I am pretty sure that I’m on the right “node” because my foot still does lay flat, but not the right amount of electricity. So, I’ll try this reduced amount and see if that helps at all. I’m now at 3.60 volts.

So…I am pretty sure that everyone reading this blog knows that I am a pastor’s kid. If not, I just told you, so now you know. ;) I also think that everyone knows that I go to the church my dad is the pastor of. And finally, everyone knows that I’ve been walking with a walker for over 10 years now. All that background to say this: Last Wednesday night, I went to church. As I pulled in the parking lot, I noticed that there was a new sign accompanying a few of the handicap signs that were already in place. My first reaction was to take a picture. My second reaction?! I laughed so hard. You cannot tell me that God doesn’t have a sense of humor. Here’s the sign:

For a little perspective: I saw this sign 11 days after I went “cold-turkey” on using either the walker or my cane. I had not been using my walker for a while, but was 11 days out from using any assistance. Only 11 days!! These signs weren’t there the Sunday before (or at least I didn’t see them). I mean, for over 10 years, I've walked with a walker and 11 days after I go cold-turkey on any assistance, they put these signs up?!! What about the past ten years?!! Haha. God, your sense of humor is awesome. :)I love it! Laughter sometimes truly IS the best medicine. I serve a God who knows I need laughter in my life. Thank you, God for this. It's truly just what I needed! As someone pointed out, now that I AM walking, I deserve to park there as it does say “wheelchairs and WALKERS only”. Haha.

I have one very important anniversary coming up. February 23 will be one year since the actual deep brain surgery. It's not the day the device was turned on and activated, that was March 29, but it's the day of the big, awake brain surgery. How can it already be a year?!! All I can do is marvel and stand in awe of what God has done and will continue to do. So, even with a few not-so-great walking days this past week, I can still say that I am incredibly blessed and I’m getting better….one very, extremely, slow step at a time. ;) God’s Got This!!

Tuesday, February 14, 2017

Turn-It-Up Tuesday: February 14

Today’s special. It’s Valentine’s Day! I hope everyone reading this is feeling loved. There’s another reason that today is special for me. It’s been exactly one year since I first had my hair shaved off. Since it’s been a year, I don’t feel as self-conscious about sharing this picture with you. The picture on the left was taken on February 14, 2016 and the picture on the right I took today, February 14, 2017.

It’s been quite a year! Now that I’ve reached my “goal” of going a year without having my hair cut, I’m now ready to get it shaped up and “styled”. I have to admit though; I like it this length. I never thought I’d like it short, but it has its advantages. ;) I felt like I was having a bad hair day today, but as soon as that thought crossed my mind, I laughed and told myself, “I’m glad I have hair to have a bad hair day with!”

I have been cane and walker free since Saturday, February 4. I thought I was going to be using the cane a lot, but I just went cold turkey. This does not mean that I’m walking normally though. In fact, over the past week, I’ve seen some declines in my walking, but, at the end of the day, I can truthfully say I didn’t use a walker or a cane to get around and I didn't slip, trip or fall. I call that success! Sometimes though, walking is painfully slow. Take one step. Stop. Take another step. Stop. And on and on and on. It's not automatic yet all the time. Sometimes, it is, but more often than not, it's not! I went to the store "Tuesday Morning" this past Saturday and there were NO handicap parking spaces. I decided to park in a normal space and walk in. This was the first time I had to cross over traffic to get to a store while walking with no assistance. It was painful. If you had been there to witness it, you would have asked me what’s wrong or if I needed help, but thankfully, I was alone and there were no people to distract me. There were also no cars coming when I had to cross over to the store. It took me FOREVER, but, with God’s grace, I did it and I didn’t fall and I didn’t have to get down and crawl – ha!! Once I got in the store, I didn’t get a cart. That in and of itself is monumental. I ALWAYS get a cart to hold on to. I walked the whole length of the store and back – no cart, walker or cane. I even, by the grace of God, made it back to my car without falling. Once, I got to the car, I took a picture of where I had just come from. It's not far at all, but believe me it was far enough for me and I was praising Jesus I made it!

My co-worker, Sarah said to me a week or so ago, “This was the dream, wasn’t it? This was the goal.” Yes, Sarah, it certainly was and is. It’s still surreal to me that I can walk with no walker or cane. It’s like being blind and being able to see again; being deaf and being able to hear again. It is one of the greatest gifts the Lord has given me and I’ll thank Him until my dying day. I even took a picture of my feet because I have never seen them so straight!

I was reminiscing this past week and remembered what my mom said to me after I had just gotten the diagnosis and the reality that there was nothing that could fix it. Doctors could only treat the symptoms and try to stop the progression of the disease. Mom said that I should never give up hope. She said that every day new medications and new treatments are being born. She told me that day that I never know what might happen in 10 years or so. Was she ever so right!! Ten years down the road and deep brain stimulation was born. Thank you, Mom for your wise, encouraging words!

Like I mentioned above, my walking hasn't been the best the past week but I still did it! But because walking wasn't the best, today I decided to turn up the electricity in my deep brain stimulation device. Dr. Tolleson had set it at 3.50 volts. I sat on that level for the past 2 weeks. Today, I turned it up to 3.70 volts and to be honest, it’s been one of the worst walking days in the past 2 weeks. However, I did not fall. So, if I can stand it, I’m going to stay on 3.70 volts and see how my body responds. It usually takes at least 2 weeks, sometimes much longer, for the electricity to "do its thing" in dystonia patients. So, I have to be patient! Today may not have been the indicator for what’s to come. But if it is, I can always go back to 3.50.

It’s taken me a year, but I’m finally understanding what’s going on with deep brain stimulation. There are 4 (or maybe it’s 5 – I can look it up in my notes) “nodes” that are implanted deep within my brain. I cannot control which node I’m on, only the doctors can control that. They are the only ones that can move me from one node to another. What I can control is how much electricity I can give myself on each node. I started out on node 1 – this node is the farthest node out from my deep brain, but still in my brain. Then I was moved to node 2. That’s a little closer to my deep brain. On January 31, Dr. Tolleson moved me to node 3. I do believe node 3 is the node for me, but I guess that remains to be seen! :) Dr. Tolleson gave me 6 “notches” on the node he programmed that I can move the electricity up on. Since I didn’t move up any last week, I decided to move 2 notches today, which leaves me only 4 more to go. This deep brain stuff hurts my head – and in this case I don’t mean literally! I mean, when I start to think about it, I just have to praise the Lord that He created people who have brains to come up with this stuff because it’s way beyond my education level!

While today wasn’t as fantastic as I was hoping it would be, it’s a thousand times more fantastic than last year at this time. I stand and walk in AWE of how great God is. We sang the song “Came to My Rescue” by Hillsong on Sunday at church. We’ve sung this song many times, but Sunday, I got choked up singing, “I called You answered. And You came to my rescue”. That’s exactly what happened. I called and God answered and came to my rescue. Many of you know how much I love Garth Brooks’ music. I’ve been listening to him while working out and there is a line in his song, “The River” that I was reminded of again. I absolutely love it: "And there’s bound to be rough waters, And I know I’ll take some falls, but with the good Lord as my captain, I can make it through them all.”

I am so undeservingly blessed. God is amazing and I continue to be in awe of Him. Through the good times, through the bad times, through the quiet times and the loud, through every second of every day, GOD’S GOT THIS!!!

Tuesday, February 7, 2017

Shouting From the Rooftop: February 7

“But let the one who boasts boast about this: that they have the understanding to know me, that I am the Lord, who exercises kindness, justice and righteousness on the earth, for in these I delight,” declares the Lord.” Jeremiah 9:24

“May I never boast except in the cross of our Lord Jesus Christ, through which the world has been crucified to me, and I to the world.” Galatians 6:14 NIV

The above Bible verses have been rolling around in my head for the past week. It’s Tuesday and I’ve been holding on to things to write about in this blog post for a whole week. Yet, as I sit here, I don’t know where to start or what words to use. It’s in times like these that no earthly words describe how I feel. But I’ll try.

Amazing, wonderful, earth-shattering, MIRACULOUS, lovely, freeing, dumb-founded, beautiful, scary, messy, confidence building, faith-affirming, trustful, courage building. OK, those are some words. I hope you’re getting the picture. ;)

Thursday, February 2, 2017 9:57 am: It was time to head to a meeting at work. For whatever reason, I decided to test my faith/courage/confidence. The meeting room was only down the hall. I decided to ditch the cane. Could I do it? I left before two of my co-workers who were going to the same meeting. I decided I needed a little extra time to make it. I got to the conference room on my own two feet. No walker, no cane. I wanted to shout it from the roof-top. No one seemed to notice. After the meeting I walked back with my co-workers and as soon as I sat in my chair, my co-worker, Sarah said, “You did it!!” She said the second I walked by her desk, she got a glimpse of me out of the corner of her eye and she thought she saw me walking on my own. Once I had gone, she looked in my cube and saw my cane. She yelled to Debbie, “Look! Her cane is in her cube!!” To which Debbie asked, “Do you think she forgot it?” Sarah replied, “No, I think she did it on purpose!” My co-workers, knowing me, kept silent until I got safely back to my desk. They knew if they made a big deal of it, I would lose my resolve and quite possibly my gait. They know that one of my biggest fears is walking in front of people. But they noticed. It was a big step (pardon the pun) in boosting my confidence.

Friday, February 3, 2017: As much success as I had had the day before in walking short distances cane-free, it all back-fired on Friday. A little, that is. I felt “wobbly” all day, like I could fall at any moment. I was so frustrated and discouraged. But something beautiful happened on Friday and it changed my whole perspective. My co-worker, Sarah noticed how I walked confidently when there was a wall or a cube or something nearby that I could grab a hold of if need be. But when I got out into wide open spaces, my walking changed and I became less confident and less secure. She flat out said to me: “There is nothing physically different in you when you go from walking near something you can grab a hold of to walking in a wide open space. Why the difference in walking?” That was hands-down the conversation I needed. I did ask myself why I had issues between the two and the only answer I could come up with was fear. I didn’t like that – not one bit. I mulled over that conversation the entire rest of the day and into the night. It was definitely food for thought. Friday, I kept having to look down at my foot when I sat at my desk at work. For the life of me, I couldn’t tell if it was curling under or laying straight. Every time I looked at it, it was straight! After work, I went grocery shopping and something in me changed. I felt my foot lay flat on the floor. My toes didn’t curl under. By the time I got home, I decided to put away the walker that I had been using at home. Yes, while I only used a cane in public, I was actually using a walker at home. More for convenience sake than any other. I didn’t have to “think” about walking when I used it. I didn’t have to try. I also could pile my dinner plate, with my iPhone and magazines and books onto it and get them all to one place and back in one trip instead of having to make multiple trips to carry everything. But Friday, February 3, I ended all of that. I put my walker away.

Saturday, February 4, 2017: I woke up and something crazy happened. I decided that I didn’t need the walker in my car anymore. Again, and to my surprise, my foot laid flat on the ground. My toes weren’t curling, nor was my foot curling. I felt relaxed and free. I thought about going “Facebook Live”, but quickly decided against that. I wanted to be able to “control” the video I wanted to make. So, with iPhone in hand, I started recording. The 4 minute video I posted to Facebook is what happened next. I walked, cane and walker free. I removed the walker from the car. It was a very, very momentous occasion. After the removal of the walker, I ran errands. I have never, ever (in the past almost 12 years) remembered feeling so free. I WALKED. I WALKED. I felt steady and confident and courageous and I couldn’t stop thanking Jesus. With each step it was like a Hallelujah Chorus going off in my head. In the words of my niece, “I did it!” Actually, no, GOD did it!!! I went over to my parent’s house to drop off some chicken noodle soup and crackers (both of them had bad colds/bronchitis). I showed my mom the video and she’s the one that insisted that I post it to Facebook. I didn’t want to because I thought it was too long (4 minutes) and it wasn’t “perfect enough”. I also thought it may be too premature. What if my walking was just a fluke that day and I woke up on Sunday and it was back to me needing to use the walker? But in the end, I heeded her advice and posted it. I was nervous about the response I’d get. For a girl who wanted to be an actress and be in the spotlight, I sure wasn’t acting like that. I needn’t have worried. All of you who watched and commented were so extremely kind. I don’t deserve the kindness you bestowed upon me, but I do thank you from the bottom of my heart. As I was leaving Mom and Dad’s, I told Mom that I would probably use the cane to get in and out of church the next day. Her response? “I wouldn’t.” ;) I mulled over that and decided I would decide what I’d do when I got to church the next day.

Sunday, February 5, 2017: I drove to church and didn’t get to park in my “normal spot” – haha! The devil started early throwing curve balls. ;) But when your God goes before you, stands behind you and is always by your side, you step out on faith and let Him do the rest. And He came through big time. As I started to shakily walk in, I spotted friends, Charlie and Tina, walking in. I asked if I could walk with them to be distracted “just enough” to walk correctly. They walked with me and did just that. They were the life preserver God threw my way! When I got in church, I was able to walk pretty well. Neither Mom nor Dad were at church. Thankfully, it wasn’t Dad’s week to preach. But this meant that I wanted to sit with my brothers and that meant sitting on the very back row. Hope still has to be taken out sometimes when she gets loud or hungry and fussy. Sitting on the back row would have been fine, but I realized that we were having communion and that I’d have to get up and walk up to the front to receive it. Again, God came through. I ended up holding my niece, Genevieve’s hand (she’s 2 ½) and just holding her hand was enough to get me to walk pretty flawlessly up to and back from communion. After church, I went to Walgreens. I didn’t take the cane, just my own two feet. I walked the whole length of the store to pick up something at the pharmacy and I didn’t slip, trip or fall. AMAZING!! God is so, so, so good!!!

Monday, February 6, 2017: I had a choice to make. Would I or would I not walk into work with a cane. As I parked my car and got out, I didn’t get out with the cane. I made into work on my own two feet!!! This is monumental because I haven’t done that in over a decade. NO CANE. NO WALKER. And when I got inside, I took the steps up. Once I got to my floor, I was practically running (OK, not really) because I was so giddy. My co-workers were shocked and thrilled. Heck, I was shocked and thrilled. I made it ALL DAY on my own two feet. When I left work, I took the stairs down. Yes, I took the STAIRS down. I had to take them one at a time (not fluidly like 1, 2, 3…I took one stair, stopped, took another stair, stopped), but I took the stairs!!!!

Tuesday, February 7, 2017 (Today): My co-worker, Sarah asked if I made it a two-for. I didn’t know what she was referring to until she looked in my cube for my cane. Yes, God came through again. No walker. No cane. Today wasn’t without little problems, but I didn’t trip, slip or fall and I used my own two feet ALL DAY long. In my book, that’s a win!

While this past week has been life-changing and wondrous, I’m not perfect. No one is. But when I say I’m not perfect in this context, I’m talking about my walking. While I’m doing it, watching me sometimes, you’ll quickly be able to tell I’m not “normal” yet. While sometimes I walk without issue, other times, I have to take a step, stop, take a step, stop….But even in those times, I know God is working in me. I ask Him every morning to build a mighty fortress around me and keep me safe from falling, tripping or slipping. While God does perform miracles and I do consider what I’m going through a true miracle, He at the same time wants us to use common sense. He gave us a brain for a reason! On that note, I stocked up on Band-Aids, just in case I am to fall. I bought a box of 100 in all different sizes. ;)

One other thing. I think I forgot to mention in my last post that I spent 2 hours with Dr. Tolleson at my appointment on January 31. Two hours. He sat there and adjusted the stimulation in my brain. He watched me walk. He answered questions. Even when his hand was on the door to leave, he turned around and sat back down when I had more questions. I wanted to put this in here so that I’d remember what he did and also to thank him. It’s not often you get a doctor to sit with you for 2 hours and I am forever grateful that he did!

And back to how I began this post. Sometimes, I think it’s all me. I did this. I did that. Nope, nope, nope!!! In reality, it’s God and God Alone. So, if I boast, I must boast in Him. He’s the one who saw my despair and aggravation. He’s the one who has heard every prayer. He’s the one who acts on His own schedule. He’s the one who is healing me and teaching me along the way. I’m the stubborn, impatient mule. If you see me, know that nothing good that's happened/is happening to me is any of my doing. It's all the Lord and His name and His name only should be praised!! However, I do get this: when God lavishes His gifts upon me, I can’t keep quiet about them. So, from every roof top, I want to scream with all I have in me, “Look at what the Lord has done!!! Look at what He continues to do. My God is awesome. He’s mighty and powerful. The defender of the weak and the protector of me. Thank you, Jesus for all you have done, continue to do and will do. Thank you for loving a sinner like me."

Always, always remember that…God’s Got This!!!!!!!!!!