Tuesday, August 30, 2016

Turn-It-Down Tuesday: August 30

This post will be a little shorter than normal. Partly because I don't have that much to report, but mostly because I got "Chicago Med" Season 1 in the mail today (as a birthday present from my brother) and I really, really want to start watching it. Priorities, priorities ;)

I turned the electricity down in my deep brain stimulation device today. Down because I already know what it does on a higher level, so I'm experimenting with the lower levels. I actually turned it down by .20 volts instead of just .10. If I see worse results, I'll turn it back up, but for now it's set at 2.50. It actually kind of surprised me this morning that I was at 2.70 volts. I seriously thought I was already at 2.50. On another note, but in the same vein, the lower the setting is, the longer the battery will last in the device. That's not to say that I shouldn't be afraid to use the higher settings, but if I can find my "sweet spot" on a lower level that will eventually save me from having to get it replaced sooner. On average the batteries last about 5 years.

This past week definitely had its ups and downs, but no catastrophic downs and no miraculous ups, so I'm concluding that I still get to "play" with the levels. On one hand, I'm grateful for that and on the other I just want a level to work!! I return to Vanderbilt on September 22, so I have until then to play.

One unfortunate event did happen this past Friday: I fell. And it was a pretty hard fall. It was totally my fault, but a fall is a fall. I have ONE tiny, teeny, itsy-bitsy step in my house and that is from the garage into the house. Friday night I went grocery shopping and I was bringing in yogurt. I was holding three cases because I'm impatient and just wanted to get them all in at the same time. I stepped up and somehow lost my footing. Well, the rest seemed to play out in slow motion. I knew I was falling, but couldn't do anything about it because I was holding the yogurt. I actually fell backwards. I landed on my butt, but also hit my head on the car (my garage is small!). I wasn't hurt, but it was the "last straw" in a few bad things that happened on Friday and I just burst out crying. Yogurt went flying (but surprisingly didn't burst open or anything) and I sat there on the garage floor for a few minutes feeling sorry for myself. But then, I got up, dusted myself off and did the only thing that would make me happy: go and see my 2 year old niece.

Speaking of Ms. G. - I find it highly amusing and perfectly fitting for God to use her to help me walk better. I was with her all day Sunday and only used the walker to get in and out of church. When I have something or someone else to devote my attention to, walking takes a back seat. It wasn't perfect by any means, but I did "run" after her all day and for the most part kept up. I had a helper though in my Dad's secretary, Linda, who took over a few times. We had to stay at church for a voter's meeting and were there until about 2:30pm, so Linda could tell when I was getting tired and she'd run after G. But - I would do ANYTHING for that little girl and her cousin, so on Sunday, that meant chasing her around church. I didn't have time to think about walking, I just had to do it. ;) I said in my last post that a little bit of distraction is a good thing. "Running" after G was definitely the distraction I needed. :)

Thank you all for continuing to follow along on this journey. In particular, I'm very thankful for those that have given me compliments this past week on my hair. I'm still very self-conscious about it, but your comments have helped immensely. I have to give the biggest shout-out to Little G though. She and I have the curly hair. When she saw me for the first time without the wig she pointed at my hair as said, "Hair - pretty!!" "I touch?" While I wore the wig, she was taught not to touch it because it would get dirtier faster. Talk about melting my heart!! Of course I let her touch it. And then on Sunday as I was changing her out of her Sunday dress, she reached up and grabbed my hair and said "I like". "Curls". Again, she melted my heart.

I am blessed and I know that I am. I hope by sharing my story, I can be a blessing to someone else. It's not an easy journey to walk, but it's the journey God has me on, so I'll keep putting one foot in front of the other and rely on Him to keep me from falling.

And now that I'm done with this post, I realize that it's probably not shorter than any other post I've written - oh well!! Again, thanks for reading. May God bless you immensely in the coming week.

Tuesday, August 23, 2016

Turn-It-Down Tuesday: August 23

First and foremost - thank you so much to everyone for reading my last post and for celebrating along with me. I know how hard it sometimes to be happy for others when you yourself don't feel happy or are fighting your own battle. I know this because I have (unfortunately) been that person. So, it really is with heartfelt gratitude that I thank you for celebrating with me and for me.

Since writing that last post, I have had good days and not-so-good days. I have to get it through my thick skull that this is OK and human. The thing is, I'm an all or none girl. Believe me when I tell you I am working on this, but I tend to see things black and white:
"I'm going to be able to walk again with no problems."
"I'm never going to walk right again."
That's just not the case with either scenario.
The truth is, I'm going to have a mixture of both good and bad days, like everyone else. So, while I was elated Thursday, Friday and Saturday, it was on Sunday that I started having problems again. Monday was not a good walking day (although overall a wonderful day because it was my mom's birthday!!) and today has turned out to be somewhat like Monday.

I decided this morning that I would try turning the electricity down by .10. I'm now at 2.70 volts, still on Frequency B. To be frank, I've doubted my decision all day. I thought up until this very moment that I would increase it again to stay at where I've stayed the past week: 2.80 volts. But, in the end, I'm leaving it at 2.70 volts, because, for crying out loud, it hasn't even been a full 24 hours at this level. ;) But don't be surprised if there is another post later in the week, saying I turned it back up. By saying that, I'm really just giving myself permission to turn it up if I see no results! Haha.

Vanderbilt called me yesterday. Specifically, the physical therapy department called me. They said that they had gotten orders from my neurologist to set up appointments with me. My first reaction was to tell them that I don't live in Nashville. They said that they saw that and wondered if I was going to be in Nashville sometime soon. I told them I had appointments on September 22 and I could meet with them then. Then they told me that these would be reoccurring appointments (like weekly). To this, I said that I'd like to be referred to a physical therapy center closer to home. So the woman on the other end of the line asked if I'd like to cancel the request. I told her yes and said that I would get my doctor to refer me to a physical therapy center here in Knoxville. We hung up with each other. I had to laugh to myself because my dad had been asking if I was to do any physical therapy. I had told him no, that they hadn't said anything about that. So then I thought to myself, they must just be waiting until 6 months out from surgery for me to begin it. I was super busy at work, so I didn't get a chance to call my Nashville neurologist, when, about 30 minutes after the physical therapy place called, my scheduling coordinator from Vanderbilt, Patricia, called. She asked if I wanted a new neurologist closer to home and did I want all of my stuff transferred to Knoxville. What?! Where did that come from?! I told her NO!! Side note: all of my care and appointments will eventually be transferred to Knoxville, but not until after my 6 month post-op appointments and evaluations are complete. Even then, I'll go to Nashville in a year for a follow up appointment with Dr. T. OK, I'm done with the side-note. :) Patricia then asked why I had cancelled the motor skills appointment she had reserved for me on September 22. I told her I didn't. Then she asked if I had gotten a call from a physical therapy center in Nashville. I told her I had. She said that was the motor skills test. I told her it wasn't. The lady from the physical therapy center said that she needed to set me up with reoccurring physical therapy appointments and I told her if that was the case, I needed them in Knoxville. This is when both Patricia and I figured out what was going on. Patricia apologized profusely and said that whomever I spoke with must be new because all Patricia and Dr. T. had sent over was an appointment for the motor skills test. They had NOT sent over a request for physical therapy sessions. She again apologized. She said that the physical therapy place wasn't even supposed to call me (that's Patricia's job - hence her title of scheduling coordinator) and that she would get my appointment re-scheduled. Thank God, for scheduling coordinators!!!

Last night, my dad was helping me walk out of a restaurant were we had been celebrating my Mom's birthday. I was having issues. We were talking about the process and I told him that sometimes a little distraction while I'm walking is good for me (like talking to him while we walked). I kid you not, the second I spit out those words, I stumbled!! To which Dad said, "What made that happen?!" And to which I replied, "Probably being distracted talking to you!" You can't tell me God doesn't have a sense of humor - haha!! Another side note: Dad was holding on to me and didn't let me fall. Thank you Dad for catching me! :)

I've been reflecting a lot this past week on what I wrote in my last post. It is so, so easy to be happy and cheerful and in an excellent mood when my walking is great and so, so easy to be down and depressed when my walking is less than ideal. Like I said in my last post, I do believe the devil is real and he lives in this world and he's so excited about tripping me up (haha - see what I did there? Tripping!), but I have to hold to the firm foundation that he can't get to me if I keep my eyes on Jesus. Again, I'll use the Bible story of Peter walking on water. When Peter's eyes were on Jesus he WALKED ON WATER!!! It was only after he looked away and saw the waves that he started to sink. But even as he started to sink, Jesus grabbed him by the arm and pulled him into the boat. I'm so thankful for a God like that. That even when I take my eyes off of Him, he still loves me enough to reach down and grab me and pull me to safety.

I thought of 3 goals this past week. As I sit here tonight, I'm laughing because the first goal is hard for me, let alone the 2nd and 3rd. However, I'm going to post them here, because I have faith that God will allow me to do all three.

Goal #1: Walk without the walker
Goal #2: Walk without the cane
Goal #3: ice skate

Yeah, that third one really does say ice skate. I've wanted to do it since as far back as I can remember. It seems like a far fetched goal right now, but at the same time, I really have a feeling that I could do it one day. Anyway, it's always fun to dream big with goals. All three of these are big, but I've got a big God!

In closing, I'll say again, this past week has been full of good days and full of not-so-good days, but God's continuing to weave my story together. I am so excited to see what He's got in store. God's Got This!!

Thursday, August 18, 2016

Shouting From The Rooftop - Again!

God is AMAZING!!! I'm shouting this from the rooftop again, because today was amazing. Just when I get sad and depressed about not seeing the results I want, God allows me another glimpse of the extraordinary things He is continually doing in my life. I forget sometimes, so He shows me. I feel ashamed for ever doubting that He loves me and that He only wants what's best for me. Thank you, God, for forgiveness and for unconditional love.

Today I walked the best I've walked since my first "Shout It From The Rooftop" post. I can say it's because I turned the electricity down in my deep brain stimulation device and I don't think I'd be entirely wrong, but I have to give ALL the glory to God. It's only because of Him. I truly believe that. Thank you, thank you, Jesus!!

This morning when I got out of bed, my toes laid flat on the floor (instead of curling up like they usually do) - yay! I still walked into work with the walker, but once I got to my desk, I parked it and didn't use it again until I left work at the end of the day.

A little background: my company has two buildings that are connected by a covered walkway. I had a meeting in the other building today. It's not a huge jaunt, but when you have walking difficulties, any jaunt is huge! I have never tried walking from the building that I work in to the "new" building without using the walker. (I put quotes around "new" because it's not that new anymore, but that's how I still identify the building!) It's just "too far". But today. Well, today, I turned to my co-worker Debbie and said I wanted to try to walk with just my cane. I didn't know if I could do it, but I had just enough bravery (thank you, Jesus!) to at least try it. The meeting was at 10 am and I told Debbie that I'd need to leave super early to make sure I made it on time (because I am super slow!!). Debbie said she'd walk with me. She also carried my laptop. That's something I still have to figure out how to do - walk with my cane and carry my laptop. I do have two hands, but sometimes, I like my "free" hand, free in case I need to grab a hold of the wall or something! I already knew that it took me 15 minutes of walking with just a cane to get to the parking garage that's attached to the building I work in, so I thought walking to an entirely different building may take a little longer. It turns out it's about the same amount of time! Guess what?!! I DID IT!! Well actually, God allowed me to do it!! Thank you, God! I walked to the "new" building with just a cane. Seriously, did you read that?! WITH JUST A CANE!!! And in the process of doing this, I experienced things I've never experienced before. I've worked at my job for 11 years now and I have never, ever been in the staircases of the buildings. Never. I didn't know where they led to (in regards to where they came out on the different floors of the buildings). It was all brand new to me!! I could of used the elevators, but I was using my cane. That meant I could walk up and down stairs, so of course I wanted to take the stairs. When we got in the "new" building a God thing happened. Of ALL the people I could have passed in the hallway, I passed by the guy who years ago broke the ice with me when he commented after seeing me use the walker to walk out to my car, "Old football injury?!" He made my day back then and I still remember that encounter. Unfortunately, I still don't know his name, but he's a part of my story nonetheless and for me to walk by him today - that's a God thing!! I walked up and down the "new" building's stairs!! I had been down them once when the fire alarms went off, but this time it was awesome. Ya'll - I just said going up and down stairs and being in stairwells is awesome! Oh how I forgot how awesome it is. It's the little things in life. Also, I walked fast!! OK, not all the time, but there were times, I was walking fast!! In fact, my co-worker Stacy said that she thought I was using my walker because I was walking so fast by her desk. Again, ya'll - you don't know how excited this gets me. I am so, so, so happy!!!

This is not to say that I'll walk well tomorrow or the day after, but today - today I walked wonderfully. I'm not sure you'll ever know how happy I get on these days unless you've experienced something like this yourself, but for those you can't imagine, I'll tell you it's life-altering. Again, I have to give ALL the glory to God. I did nothing to deserve this. It's a gift. It's a gift I'll treasure on the bad days and bathe in on the good days.

Vanderbilt called me yesterday. I was supposed to go back from my 6-month-post-op appointment on September 6. However, my neurologist isn't going to be there that day so I've rescheduled for September 22. I'll have three appointments that day: one with my neurologist, one cognitive function appointment and one motor skills appointment. My mom asked me if I was sad that the appointment got moved. On one hand, yes, but on the other hand, no. It'll give me more time to test the levels on my device. It'll give me more time to practice walking. It'll also give my hair more time to grow out. I also realized that the official 6 month mark isn't until September 29, so the new date is closer to that then the original appointment date. I really want to be able to walk in to the neurologist's office with just a cane. A miracle (and I do believe in miracles and completely believe it could happen) would be if I walked in to his office on my own two feet with no walker or cane!! It's days like today that keep my hope and faith alive that this can happen. Again, thank you, Jesus for this!!

I had to share my "rooftop experience" with all those who have followed along on this journey. I also know that the devil is alive and well in this world and that he does not like the fact that I'm giving all the glory to God. He'll probably try to derail me and he may even succeed from time to time, but my God is bigger than him and I have nothing - absolutely nothing - to worry about. God's Got This!! I'll shout and shout that again - God's Got This!!!!!!!!!!

Tuesday, August 16, 2016

Turn-It-Down Tuesday: August 16

Up until I woke up this morning, I had it in my mind that I would turn my deep brain stimulation device up today. Being at a level 3.00 on frequency B just didn’t cut it for me last week. I was hoping and praying for that miracle again, but God saw differently. In my weird thinking, I thought that if I went past the point (3.20 volts) that at one time gave me trouble, 3.30 volts may be the “sweet spot”. So, I was going to go from 3.00 to 3.30 volts. That is until I woke up this morning. This morning it struck me that I had never been lower that 3.00 on this frequency. I had to admit that I was still showing signs of having too much electricity. All week I waited to turn it up and then today came and I completely changed my mind and turned the electricity down! I turned it down to 2.80 volts.

And although I really, really thought I felt things calming down after I turned it down, I’m pretty sure all of that was psychosomatic, because the truth is, I’m not seeing any dramatic changes yet. I do feel good though about turning it down – at least for the moment. You may get another blog entry from me later this week saying I couldn’t wait and I’ve turned it up. All this to say, I really, really, really want to find my “sweet spot” and put an end to all this testing! I mean, it’s fun sometimes, but really I just want to be on a level that works for me - some place I don’t have to worry about if it’s going to work or not. But then again, knowing me, I’ll probably worry anyway. I really do try not to worry, as I know that’s a sin, but that’s my inclination. God’s working on me though!

My godmother told me I had the ministry of perseverance, endurance and trust. I never, ever thought of myself as having these ministries. If I’m being completely honest, I’m not sure they are the ones I would have chosen for myself. But then again, we rarely ever get to choose our ministries, right? I don’t feel like I persevere at all. I get so impatient and upset with myself, which overflows to being impatient and upset with others. If I do persevere it’s to survive. ;) I’m human and fallible. I get angry, frustrated, sad, depressed and anxious just like everyone else does. I’m not a saint. I play the “poor me” card every once in a while (or, if I’m being honest, a lot more than once in a while!). The ministry of endurance – that just makes me laugh. Only because when I think of endurance, I think of athletes and I am nowhere even being minutely close to being an athlete. However – on a side note – sports movies are one of my favorite movie genres. That’s probably going to shock most people, but it’s true. It’s because sports movies are almost always about overcoming obstacles. They almost always have a redeeming value. They are almost always about the underdogs. As for having the ministry of trust – well trust is what I'm constantly working on. My ultimate ministry though is to bring people to know Jesus. So, if someone can grow closer to Jesus, or discover Him for the first time just by seeing me go through something or hearing something I say or reading something I write, then this whole journey - the good, the bad and the ugly of it - is definitely worth being on. It wasn't the plan I set out for myself, but it's God's perfect plan for me and because of that, I can say it's the journey I'm blessed (yes, blessed!) to be on.

I’ll end this post by saying once again, God’s Got This!!

Tuesday, August 9, 2016

Tune-In Tuesday: August 9

Today, I ended up turning the stimulation in my deep brain stimulation device down again. I’m now back at 3.00 volts. This was the “sweet spot” that I got miraculous results at about 3 weeks ago when I turned it from frequency A to frequency B.

The reason I’m back down and not up this week is I’m still seeing symptoms of having too much electricity. My foot and toes are still curling up and turning in and my hand moves awkwardly.

Just as a little caveat...I’m supposed to be experimenting with the levels of stimulation I give myself. The doctors have given me permission to do this. Everyone is unique, so the doctors can’t say without a shadow of a doubt that one way, one level, one frequency will work for everyone. To make it even more “unique”, dystonia patients are in their own category when it comes to seeing what DBS can do for them. So, I have to experiment. I remember the neurosurgeon telling me that everyone has their own “sweet spot”. When I was in surgery, he tested and tested and tested somewhere around 30 different “spots”. He knows the general area of the brain to stimulate to get the best results but each patient has a different "sweet spot" that works best for them. To find that he has to test and experiment, which is why I had to be awake during the surgery. It’s like that with what I’m doing with the volts of stimulation. However, I can only go so high or so low with the stimulation because of the way it’s programmed. The doctors at Vanderbilt can monitor everything I do. I don’t think they are actively looking at what I’m doing on a daily basis – I’m just not that interesting and they don’t have the time (nor probably the desire!), but they could (if they needed to) look at everything I’ve done. I hope that clears up some confusion you may (or may not!) have in regards to my going up and going down in stimulation.

This past week I have started to deal with readjusting my expectations of everything. The doctors told me that DBS won’t “cure” me of dystonia. I read it again last night in all the pamphlets and reading material they gave me. It’s not a cure. I know that. Logically, I know that. However, I’ve let myself believe that it is a cure and therefore have completely frustrated myself! I got my expectations WAY up when I had that miraculous day where I could walk better than I ever have been able to since starting to see signs of dystonia. I felt like I should be able to walk like that EVERY day from here on out. That’s just not the case and never will be. I can have a great walking day and then the next day have an awful one. DBS isn’t necessarily going to fix that for me. So, I’m readjusting my expectations. It’s oh-so-hard, but I’ll get there. Another expectation that I am readjusting: walking with the walker. Again, I had oh-so-hoped that once I went a full day NOT using it, I would never ever have to use it again. I thought that if I did use it, I was a failure. Now, I’m trying to adjust my thinking to think that it’s a tool to use if I need it. And if I need it, it doesn’t mean that things are getting worse or that I’m a failure, it just means I’m not having the best walking day and I need it to assist me to walk.

Another thing I’m dealing with is coming to terms with the fact that I may have one thing and not the other. I’ll be elated if I end up with both things, but I’m readjusting my expectations. What do I mean by having one thing and not the other? Well, I’ll give you an example one of the Vanderbilt doctors told me. One of his Parkinson’s patients had DBS done and it ended up helping him walk well but affected his speech negatively. That may or may not be so bad, however this man is a minister, so speaking is kind of important to him. He finally found what worked for him: He turned his DBS device on to walk up to the pulpit, but turned it off to preach. So, I’m experiencing that. My speech isn’t effected (at least that I know of!), but my hand is. I spoke with someone today and said that I’d been thinking about this. I want to be able to walk well. My hand, while effected, can still do what I want it to for the most part. I can tell it’s not “normal”, but I’m not sure others can. I can live with that. So, again, I’m coming to terms with my limitations and the fact that everything will probably, more than likely, never be perfect. I have to make that OK for me.

On an entirely different note, I think I’ve found the “sweet spot” styling my hair. I have to use mousse on it right after I get out of the shower and then I have to let it air dry without touching it or messing with it. If I do this, I get super curly hair that’s cute. If I don’t do this, I get bushy hair that’s not so cute! Ha! It’s amazing to me how fast my hair can dry, so I have to style it the second I get out of the shower.

Bushy Hair

Curly Hair

I have my 6 months post-op doctor's appointment on September 6 at Vanderbilt. It's going to be a long day, but hopefully a good one!

This past week has been emotionally all over the place for me. Readjusting my expectations and letting go of perfectionistic tendencies is incredibly hard for me. But, I’ve also grown in leaps and bounds this past week. I wouldn’t trade anything that’s happened in my life. The good, the bad, the ugly, the frustrating – it’s all taught me so much. I’m incredibly thankful for everything I have been given. It could always, always be so much worse. I’m blessed. Pure and simple – I’m blessed. God’s Got This!!

Tuesday, August 2, 2016

Tune-In Tuesday: August 2

When I first turned my deep brain stimulation device over to "Frequency B" back at the beginning of July, it was miraculous. I could WALK. Sure, I was still using the cane but I felt brave enough, steady enough to attempt and succeed at walking WITHOUT the walker. It was completely out of the blue and a total God thing. And then, I had to step in and mess things up. I thought, "if I'm walking this good at this level, let's see what a higher level will do and then a week later what another level higher will do" and then everything came crashing down. I wanted too much in too little time. God was working so wonderfully and I had to go and interject my opinions and my wants. Hindsight's always 20/20, right?! If only I had just been still and waited. But the awesome thing about God is, He's the God of second (and third and fourth and...well you get the picture) chances.

My friend Kristen gave me this Bible verse and I've hung it where I see it every morning and every evening. I've needed to be reminded of it more than usual this past week.

So, I'm starting over. What do I mean by that? I'm going to be still and wait on Him. I'm going to remain at 3.10 volts on frequency B for at least another week (until Turn-It-Up Tuesday rolls around again). This past week, walking has not been the best, but it hasn't been the worst. I've seen some good walking moments and some moments I'd rather forget, but you know what? God's seen me through it all. He really does know what's best for me. Why can't I get that through my thick skull?!! It should be easier now, considering the wig is gone - right?! ;) Sometimes (OK, most of the time!) I am my own worst enemy. God gives me some and I demand all, so He gently reminds me who's in control. ;) I don't believe He ever gives me false hope or leads me down the wrong path. I do that all on my own! But I am so very thankful He makes the detour with me and drags me back on the main road and sets my feet firmly on it and then directs me down it.

I've had to use the walker more this past week then I would have liked, but in that I believe God is teaching me humility. I have constantly over this journey told God that I would praise His name in the good AND the bad, but looking back over this past week, I have to admit, I haven't been praising Him that much. I've been frustrated and mad that my walking hasn't been the greatest. I tend to forget all the GOOD stuff that God has already provided and see only the "bad" stuff and the struggles and then I get frustrated and teary and in a funk. BUT, let me say it now - God is a Good, Good God. Even in the bad! I am so thankful that I don't get what I deserve, but instead He forgives and grants me grace. I'll be the first to tell you, I'm no one anyone should look up to. I'm constantly having to ask for forgiveness because I'm constantly putting my foot in my mouth, getting frustrated, getting mad, getting "woe is me". I'm just a girl trying to get from Point A to Point B without falling or making a fool of myself. I am also a girl in constant need of grace. If you get anything out of these blog posts, you didn't get it from me, you got it from God.

My walking may not have been the greatest this past week (and even now), but the week was not and is not a waste. You want to know why? It's because God is "showing me what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God." Micah 6-8

God's Got This!!