Tune-In-Tuesday: January 22, 2019

If you read my last post, you know that my neurologist upped the electricity in my deep brain stimulation device. That was this past Thursday. And, so far, so good. I’ve been able to withstand it and get around. It’s by no means perfect and walking still isn’t as easy as it has been at certain times in the past, but it does give me hope that turning it up was the right decision. Occasionally, (really, I should do this every day!), I’ll stop and marvel at how I got to and from somewhere without falling. It is that big of a deal to me. I tend to focus on how well I walked, but sometimes just recognizing that I got from Point A to Point B without using a walker, cane or without falling is victory.

There is a Bible verse that God keeps bringing to the forefront of my thoughts, whether through sermons or calendars or just thinking about it:

It gives me peace. God doesn’t call the equipped. He equips those He calls. God's grace is sufficient for ME. His power is made perfect in MY WEAKNESS.

In all things, God's Got This!

Neurology Appointment

I'm finally forcing myself to sit down and blog about my recent neurology appointment. ;) It was on Thursday (Jan 17) and went well. I haven't had time or wanted to blog until today. I hadn't seen Dr. T. since before my battery replacement surgery in August. Of course he wanted to see me walk. Somehow, I never get out of performing that task whenever I see him. He checked my settings and declared that the battery was definitely strong (thank goodness!). After he checked the settings, he played with some of them. At one point, he asked if I felt anything in my hand. I didn't at that second, but about 20 seconds later my fingers started curling without me doing anything to make them curl and contort. He saw it too and backed off the electricity. To this day, that fascinates me - how the stimulation can be seen like that. Anyway, I told him I'd been having issues and came very, very close to upping the electricity last week, but then decided to wait until I saw him to do anything. After my battery replacement surgery in August, the electricity was set to 3.20 volts. I had major issues right after the surgery with balance and gaining my footing, so I eventually reduced the electricity to 2.90 volts and that's where it's been since then. On Thursday, Dr. T. increased the voltage from 2.90 to 3.10. He had me walk for him again after he did so. He said that he thought it looked like I was walking better. He asked I how felt. He said to be honest. I felt like maybe I was walking a little better. When we got back in the exam room, I said, "but really, can it take effect that fast (on my walking)?" to which Dr. T. burst out laughing and responded, "I forgot I was speaking with a seasoned professional! You're right...it takes about 2 weeks to see any real difference." Haha. I'm a seasoned professional! I thanked him again for taking a chance on me to which he responded that he knew how frustrating it is for me to not be where I want to be. But really, I am thankful for him, for the surgery, for the progress, even in the midst of being frustrated. That's life isn't it? You have to find beauty in the imperfect. The fact is, I'm still walking cane and walker free - no matter how slow or awkward it may be at times.

The plan for now is to stay (if I can stand it) on Frequency A at 3.10 volts. I can try pushing it by 0.1 volts after 1-2 weeks until feeling good. But, if it's not better, I'll switch to Frequency D which vacillates between two frequencies. So far, walking's been harder and more unstable, but that could just be temporary. It could also be the weather - it's been raining almost non-stop every day. My hand is stronger though, so if I can just stick it out, my hope is that the electricity will do its thing. It's not my first rodeo. I know this takes time, which is why I've been hesitant to change the electricity on my own - I strongly dislike being patient and patience is what is needed. So, if you read this post tonight and see me struggling tomorrow, you'll know why. ;)

I also spoke with Dr. T. about the DBS system itself - rehashing what the Medtronic tech told me about the battery when I had it replaced. At that time she said that this new battery won't last as long as the old one because it was being implanted and turned on the same day at a high level of electricity. My first battery was implanted, but not turned on for a month and when it was turned on, it was at the lowest level and was slowly turned up. Dr. T. said that if this battery lasts less than two years, we could talk about getting a rechargeable battery implanted because as he said, "you're too young to be having surgery every two years."

Thursday night, my left shoulder, collarbone and wrist were hurting significantly. After awhile, I finally made the connection that it was because of the electricity. The battery is implanted under my left collarbone. It has been awhile since I've had the electricity adjusted, so I've forgotten about some of the side-effects. Friday morning I had the hardest time "hurrying" to get ready for work or making decisions. That probably has nothing to do with getting the electricity adjusted, but since I had that excuse I used it. I seriously stood in front of my closet for 10 minutes debating on what to wear before finally telling myself, "just pick something!". I changed clothes twice. I eventually made it all the way out to the garage wearing my coat and carrying my computer, purse, lunch, and yoga clothes, but my sweater was scratchy so I was pulling on it, only to realize that I had it on backwards! So I hauled everything back into the house, took my coat off and put my sweater on the right way. Today, I was going to work out on my stationary bike. I got on it and realized I had no shoes on! Again, both of these situations have probably NOTHING to do with the electricity being adjusted, but since that excuse is there, that's what I'm using. I had to laugh at both though.

I know that so many people have so many worse things going on in their lives than I do, but I will admit that I do get frustrated when I can't walk. I know I shouldn't complain about my situation when others are dealing with life and death situations, but I'm human. I get down-in-the-dumps. Truth be told, even though it was a pretty good appointment, I wasn't in the best of moods on Thursday. But then I woke up on Friday and realized again how blessed I truly am. God's Got This!

Tune-In-Tuesday: January 15, 2019

I sincerely thought about not writing a post tonight. Nothing really "exciting" or new has happened in the last week concerning walking and I have a neurology appointment this Thursday, so I thought about holding off. But something's been on my mind this week, so I thought I'd blog about it.

Has anyone ever taken a chance on you? Well someone (actually lots of someones) took a chance on me almost three years ago. I fought. They fought. We all fought! You see, my neurologists took a chance on me. More on that in a minute.

It seems like nothing in life comes easy for me. Seriously. One example: The second I was born, I broke a bone (my clavicle). ;) Another example of this is college. I knew from the second I stepped foot on Asbury University's campus that I wanted to go there. I was one or two points shy of having the minimum grade on my ACT (or was it SAT?) to get in. I was and to this day am not a good test taker at all. I applied to Asbury anyway. Then I waited. And waited. And waited some more. Nothing. I was accepted into other colleges that I applied to, but heard NOTHING from Asbury. I held out though. I made no decision on any other college that had accepted me. I waited. Then one day after school, the phone rang. My mom said it was for me. I picked it up and heard the voice of Dr. Timothy Thomas on the other line. He was the associate academic dean of Asbury. By the way he was speaking, I knew I didn't make it in to Asbury. In so many words (and in my interpretation) he said he thought it would be a struggle for me at Asbury. I would really have to apply myself. Then all of a sudden his tone changed and he said that Asbury was willing to take a chance on me. Then he spoke the words I thought I would see in black and white. I heard over the phone, "Welcome to Asbury!". I screamed so loud into the phone that I had to get back on and apologize profusely to Dr. Thomas. He was exceedingly happy that I was so happy. He was right though, Asbury was a struggle for me. My freshman year I called home every single night because I was that homesick. Classes were hard. But you know what? I overcame my homesickness. I overcame the struggles with classes. I'm proud to say that I never changed my major. Not once. I declared Media Communications as my major before I even got into Asbury and stuck to my guns. I struggled to pay for college. I worked my butt off in the summer to earn enough money to see me through the year ahead. I didn't work during college because I really had to study and focus on classes. But in four years I graduated Asbury with a degree in Media Communications. It was one of my most proudest moments.

I share that story to show you how I struggle through things. When Deep Brain Stimulation surgery was first brought to my attention to help with my dystonia, I was overjoyed. Yes, overjoyed. Nothing had worked up to then and if this would allow me to walk walker and cane free then I was gung-ho about doing it. But there were all kinds of red tape and obstacles to get through before the actual surgery. My neurologist here in Knoxville had to refer me to neurologists in Nashville. When I went to the neurology appointment in Nashville, Dr. T. had to give his stamp of approval before any neurosurgeon would look at me. Dr. T. took a chance on me. I think in the beginning, he had some reservations. As a doctor (I'm speculating, because I'm not a doctor), you want the cases you refer to actually be cases that succeed. My charming personality (haha - joking here!) is what won him over. ;) Unbeknownst to me at the time, there is a committee that meets to determine if a patient is a good fit for deep brain stimulation. The neurologist presents his (my) case to the committee and they have to unanimously decide whether or not a patient gets the surgery. Dr. T. fought for me. He took a chance on me. I say he fought because he did. The first time before the committee, he (I) was denied the surgery. They thought I could have other procedures done to diagnose me before resorting to DBS. Dr. T. came back to me with the decision. If I still wanted the DBS surgery he said he was willing to keep fighting for me, but I'd have to have other tests done first. I still wanted DBS, so I went the path I had to go to get there. That meant I had to have a lumbar puncture (spinal tap). I had that done. I followed the rules. I took medication that they thought would help. I did physical therapy, which they recommended. I did everything that the committee asked me to do and I still had problems walking. So Dr. T. went before the committee again and presented my case. He emphasized how young I am (haha, so I'm not that young, but I was shocked when he told me that most people who have DBS are in their 70's. I'd be the youngest patient they had done it on at the time.). He fought for me; he took a chance on me and for that I will ALWAYS be thankful. After months of committee meetings and medical tests and back and forth, the committee unanimously agreed that I could have the deep brain stimulation surgery. I remember Dr. T. asking me what my goal would be. I told him if I could walk only having to use a cane (and no walker), I'd be satisfied. Sometimes, it's so, so, so very good to remember that conversation and sit with it awhile. If I could walk with only a cane I'd be satisfied. As with everyone else, we're never truly satisfied in some situations, are we? I walk with neither a cane or a walker today and yet, I'm not satisfied with the way I do walk. It'll be three years in February that I've had the DBS surgery. It's not been a bed of roses since the surgery, but it's been an adventure. It's been a growing opportunity. It's been wildly fun. Yes, fun. I can say that because just the surgery itself was worth the price of admission - ha! Not many people can say that they've had awake brain surgery. ;) I'm still a work in progress though. I still have to fight for walking to come "easy". But, I'm exceedingly blessed. When I get frustrated with what I think is lack of progress or just being able to get from point A to Point B without falling, I have to remind myself that God is in control. I have to remember to "Be still and know that I am God." Psalms 46:10.

God always and forever takes a chance on me. I am incredibly thankful for this. When I think I've messed up, when I want to throw in the towel, when I think I can't get better, God takes a chance on me and changes me from the inside out. He holds my hand, helps me up, brushes me off and says, "You are Mine. I'll never stop loving you. I'll never stop taking chances on you."

Before I end this post, I have to say that I had NO IDEA what I was going to write about tonight, but sitting here typing this post, I can now not get the Abba song, "Take a Chance on Me" out of my head. My mom's favorite Broadway show is "Mamma Mia", so I know the Abba song well. And, if you know me well, you know I'll have this song stuck in my head all night now! ;)

Always remember....God's Got This!

Tune-In-Tuesday: January 8, 2019

Today is Elvis’ birthday. That has nothing to do with walking or any updates, I just thought it was interesting to lead with that. A few years ago, I finally got the chance to visit Graceland and even though it was pouring down rain, it was fun to see!

The past week has been pretty good. No new updates. Walking’s been better, but it’s also been worse as well, so I am very thankful that it hasn’t been as bad as those times. I have a neurologist appointment on January 17. It’ll be the first time I see him since having the battery replaced. I’ve gotten to the point where I’m contemplating giving myself more electricity, but then I talk myself out of it because I see him next week and it takes a good two weeks to see any difference. And now you’ve just experienced the craziness that goes through my head when debating on adjusting anything – ha. If it worked instantly, I don’t think I’d have nearly as many thoughts going through my head on what to do. Oh well. Such is life and in the scheme of things this is not a major thing, but it can be frustrating sometimes.

My mom got me a pair of shoes for Christmas and they are the best. They fit perfectly and give my feet so much support. It’s like walking on air. I extremely dislike shopping for shoes. I must buy shoes that fit and support, over what’s trendy and that really takes the fun out of things. Truth be told, I don’t think I’ve ever liked shoe shopping. When I opened the shoes she got me, I immediately put them on. It wasn’t until later in the day that Mom asked, “Do you think it’s time to cut the tags off them?!” She’d found keepers! 😊 A few days later she said that she went back to the store where she bought them, and they had a pair in black (what I got on Christmas was brown) which was the original color she wanted but they didn’t have them in my size before Christmas. So now I have a pair in brown and black!

Related to the shoes – my feet have shrunk! I knew that my left had because it’s the “problem” one, but now my right has too. Is that normal? I don’t think so, but maybe I’m wrong. I used to wear an 8 ½ and now I wear an 8. But maybe it’s like clothes – not all 8 1/2 ‘s are the same?! Just another observation I’ve made on this journey. Maybe like your waistline, your feet shrink?! I have no clue! 😉

I hope everyone’s having a lovely week so far. Always remember…God’s Got This!

Tune In Tuesday: January 1, 2019

Happy New Year!!! Wow, it's 2019...how did that happen so quickly?! It also happens to be a Tuesday, which is my normal blog post time. I almost forgot it was Tuesday because this past week has been a jumble of days. I've been off of work and am having the hardest time remembering what day of the week each day has been. I don't mind that all, although I do love routine, my co-workers and job. It's been so fun to hang out with family and just relax.

My walking has gotten a little better than when I last posted. I haven't fallen, so that's always a good thing. Over the past week, I celebrated 1 year of taking yoga classes. Again, where has the time gone?! Where once I thought yoga was kind of a joke (I was ignorant of what it truly does!), now I know that it helps! I've gained a new friend and cheerleader with my instructor. For Christmas, my mom got me new yoga clothes and my niece, Hope, showed me her downward dog pose, which was spot on! She's so flexible, but she is only 2 and 1/2! :)

Yesterday, on New Years Eve, Mom and I went to Dollywood. This is HUGE on many, many levels. As mentioned on this blog before, I have panic attacks. I've had them for well over half my life. When we first moved to Tennessee, 25 years ago, Mom and Dad got us all season passes to Dollywood. You'd think a 13 year old would love going to Dollywood any chance she could get, but I struggled with it. I hadn't been to Dollywood since way before my walking issues arose. I wasn't that worried about it yesterday (why I wasn't worried, I don't know, I just wasn't!), but I brought my cane just in case. Mom had something better: a stroller. Yes, a baby stroller. We had no baby with us, just a stroller! But it worked!! I had such a glorious day with Mom. Truly, it's one of those days that I'll always remember. I had so much fun. It might have taken me 25 years, but I didn't have any major panic attacks and I could walk!! I thoroughly enjoyed myself. Mom and I are alike in that we love to watch all the shows. It was still decorated for Christmas (because everything should still be decorated for Christmas until January 6 - Epiphany!) and it was gorgeous. The weather cooperated too - it was 72 degrees on December 31!! We made it home in time to watch, with Dad, the ball drop on TV ushering in 2019. I am so very thankful and blessed to have had such a wonderful day of memory making fun!

This past week, I've found so many good "things" on Facebook. I'm not sure how to describe them other than that - haha. Are they quotes? Are they pictures? I don't know, but they're so great that I want to post some of them here. They really spoke to my heart - each in a different way. I hope you enjoy them as much as I do. I'll post them in the order I found them:

The first one:

This one, I did not find on Facebook. This is the sign that my mom (and dad!) gave me for Christmas. My mom told me to hang it by the door so that I would read it each time I left the house and believe it. So, I hung it right where she told me to! (Please forgive my dirty wall...I really need to clean it!)

This one I need to read every day too! God's time is not necessarily my time. He's got this. He knows what He is doing. After all, He is God!!

This one spoke to my heart on many different levels (as in, I should not judge, but also about seasons of life and growth in life).:

And one more:

Thank you for reading this post! May this new year - 2019 - bring you joy and peace. Always remember, God's Got This!

Tune-In-Tuesday (but on a Wednesday): December 26, 2018 Christmas Edition

Merry Christmas!! I did not post yesterday, even though it was a Tuesday, because it was CHRISTMAS and I fully enjoyed the day with my family. Christmas is a magical, blessed time of year and I am most certainly blessed with the family that God allowed me to be born into!

Although I had such a blessed and fun Christmas, walking was terrible, especially Christmas Eve. I've fallen twice since I last posted. Once was pretty funny. I was at my house and my brother, niece, Mom and Dad had come over to see all my Christmas decorations. As my brother and niece were leaving, my niece wanted me to curl up in this soft Christmas blanket I have, so I did. :) They left and I was still talking with my parents. When I got up to say goodbye to them, my legs got all caught up in the blanket and I tripped and fell, but it was the softest landing ever! That blanket, although it caused me to fall, redeemed itself!! The other fall happened on Christmas Eve after I got home from all the Christmas Eve services. I had not been walking well at all and I just took a knee in the kitchen. That hurt a little more, but again, I was fine. I really truly believe that when I get super excited about things, walking becomes all that more difficult. However, I did NOT let it ruin Christmas!!

Christmas Eve is the most holy, precious time at church. I have to say (and yes, I may be bragging a little bit, but it's also 100% true), I think we have the most beautiful Christmas Eve services. I love them so much, I go to all three!

There was a Christmas Eve a few years back that I will never forget. It was one for the record books and one of the most memorable. I had just had brain surgery on December 19 to insert a shunt because at that time my doctors thought I had hydrocephalus. The surgery and recovery were a little more than I had expected to say the least. December 24 was my first time out of the house since the surgery and looking back, I completely overdid it, but it was well worth it. I enjoyed all 3 services at church and had a huge dinner at my grandparents house. After dinner, although I was feeling a little puny, I decided I wanted to go to the 11pm Christmas Eve service with Holy Communion. After having just taken Communion, I sat back down the in the pew, turned to Mom and said, "I think I'm going to throw-up." She immediately told me to run to the bathroom. So I did. I "ran" as fast as I could (and probably the fastest I had moved since having walking problems). I made it to the bathroom before throwing up. Just as I started to throw-up, I heard a voice say, "Stephanie, are you alright?". It was my friend, Kaitlyn. Her dad, Mitch, sent her in after me as he saw me running to the bathroom. If I remember correctly, she came in and held my hair back for me. That's a friend. :) By the time I made it out of the bathroom, the service was over. My mom asked my brother, Stanton to drive me home (well, not my home, but my parent's home where I was recovering.). He did, but as soon as he hit their driveway I opened the car door (which he yelled at me for - haha! I couldn't wait until he got all the way up and stopped the car.) and I threw up all up and down my parent's driveway. By the time my dad got home, he was way too exhausted to clean the puke up so he told my mom he would do it in the morning before everyone arrived to celebrate. The only thing was, the throw-up froze to the driveway and my poor dad had to get a shovel and get it all up. I laid flat that entire Christmas trying NOT to throw-up anymore. It was definitely a memorable Christmas that year, if not necessarily for the right reasons! This Christmas, Kaitlyn and Mitch were there again at church and we had a great laugh at that memory from years ago. Kaitlyn's married now had to fill her husband in on all the details. Thankfully, this Christmas, there was no throwing up!!

Another Christmas Eve memory I have was when I was a teenager and I actually caught my hair on fire. This is the reason my dad continually warns people to not dip a burning candle to light an unlit candle and for mothers and fathers to watch that their kids don't set their hair on fire. OK, maybe that's not why he warns them, but it did happen to me! I leaned over to show my brother where we were in the bulletin and my hair went up in flames! I quickly extinguished it, but my hair smelled like rotten eggs the rest of the night! Leave it to the preacher's kid to create the memorable moments on Christmas Eve. ;)

I hope everyone reading this had a blessed Christmas. I know that I am blessed. I am thankful to be alive. I am thankful for those that come beside me and help me when I need it. I am blessed that from the Christmas Eve I threw up all over the place to Christmas Eve 2018, I have gotten so much better. Oh yes, I still have many problems walking and in life in general (don't we all?!), but I know where my hope, peace, love and life come from and that, my friends, is the greatest blessing of all. As I always say (and believe down to my core): God's Got This!

19 years ago on the 19th at age 19

I knew there was something I was forgetting to write about in yesterday's "Tune-In-Tuesday" post, but it didn't come to me until today. I almost updated yesterday's post, but then decided this needed a post of its own. If you're reading this and you read yesterday's post too, bless you!

December 19, 1999 which was 19 years ago today, I was a 19-year-old college sophomore who had just returned home for Christmas break. Little did I know then that my Christmas break would be no break at all. Mom and I were involved in what could have been a fatal car accident, but by God's grace was not!

There's no way to say conclusively, but every neurologist I've seen has tried to play "Monday morning quarterback". We have no way of knowing 100%, but that accident could have been the catalyst to me developing dystonia. Again, there's no way to pin everything on that accident, nor do I want to do that, but it's one theory.

Thankfully, I don't remember the accident at all. The only thing I remember is waking up in the hospital and someone suggesting I might need surgery. I freaked out at that idea. Had I known then that in the 19 years following, I'd have more than my share of surgeries, maybe I wouldn't have freaked out as much, but then again, knowing myself all too well, I would have still freaked out. In the end, I didn't need surgery. My main, most painful injury was a fractured pelvis. I had been knocked unconscious, but being 19 at the time, I was more concerned about the pain right then and there and nothing else.

For those that know me well, you know I love anything medical. Why this is, I don't know, but I was kind of upset that I don't remember the "jaws of life" being used to extract me from the car, or the ambulance ride to the hospital with lights and sirens or the ER visit or really any of the doctors who treated me (why must they round at such ungodly hours of the night and day?!), yet at the same time, I am eternally grateful that I don't remember any of that. I would have panicked! God's there in every detail whether big or small, so He knew I wouldn't be able to handle those situations. I can only handle them when it's happening to someone else and when it's not happening to any of my family members.

The memories I have of the hospital stay are mainly good. I remember that I had a male nurse who looked like he could have been a football player. He'd sweep me up in one fell swoop and gently lay me down again on the bed. Back then, I was a little "thick" (OK, fat...that freshman 15 was more like 50 and then sophomore year came and with it, more pounds!). I remember he told me that he and his wife had just had a little boy and it would be his first Christmas that year. To think back on that means that this year that nurse's baby boy is now the age I was when in the hospital - wow. I remember Marvin W., a member of my church, got me a stuffed bear from the hospital gift shop and I still have it to this day. I remember Cheri S. (another member of my church), sat with me all day, every day, until I was discharged on Christmas Eve. I remember Oma (my maternal grandmother) spending each night with me until I was discharged. My dad couldn't be with me because he was with my mom who had the same injuries I did (fractured pelvis), but was at a different hospital. I remember employees of the hospital coming by my room and singing Christmas carols. I remember Jill buying me a new sweater because mine had been destroyed in the accident. I remember the totally hot physical therapist that attended to me. It was a good thing he was so cute, because he inflicted pain that I never want to experience again, all in the name of getting me better. I remember all the visits I got from all my friends. I remember the paramedics who extracted me from the car came by and told me they were sorry for yelling at me. I laughed because I didn't remember them yelling, but then got embarrassed because I must have been doing something wrong. They said I was moving a lot and they wanted me to remain as still as possible. Good thing I don't remember that.

Nineteen years have come and gone. Now, my brother, Stanton is an ER doctor at the very ER I was taken to back then. I still love all things medical. In fact, my brother gave me a tour of his ER last year and I saw the trauma bay. It's SO MUCH BETTER to be on the "touring" side of the ER than the patient in the ER. ;) I've had my share of surgeries since then. I've had my share of ups and downs since then, but looking back, all I can say is that I'm incredibly blessed. Blessed to be alive. Blessed my mom is alive. Blessed by the doctors and nurses and staff that took care of me. Blessed by the friends I have. Blessed to be walking. Blessed that back then and to this day, God's Got This!