Tuesday, September 27, 2016

Turn-It-Up Tuesday / Shouting From The Rooftop: September 27

Here it is – 8pm on Tuesday and I am just now sitting down to write this blog post. We’ll see how much I write. ;) I do have a lot to report so I’ll just dive right in.

Friday – After spending the ENTIRE day writing my last blog post, I ended up turning the electricity down in my deep brain stimulation device. I didn’t turn it down much, but I went from 3.10 volts to 3.00. That night, Mom, Dad and I went to see the WordPlayers perform “Last Train to Nibroc.” Other than walking into the play and out of it, I didn’t get much practice walking that day. One thing I hope I'll never forget is what my dad said to me. I was telling him about the Vanderbilt appointments and what went on. I admitted to him that I’m afraid of falling and that I get performance anxiety when walking. He said to me, “You earned that fear.” I never thought of it like that, but by golly, I have “earned” that fear. ;) Now I have to just get over it!!

Saturday, I chickened out on a couple of things. One – I went to Kroger and couldn’t find a parking spot near a cart, so I just left. I decided to go to Kohl’s. Same thing happened there. I wasn’t brave enough nor confident enough, so I just left. I could have used the walker. I could of – I just desperately didn’t want to. I drove to another Kroger. This time it was a MarketPlace one and I found a handicap parking spot with a cart right next to it. Perfect. I spent almost all afternoon in that store. I decided it was time to “stock up” on things that don’t go bad – laundry detergent, soap, shampoo – that sort of stuff. I had a TON of coupons that I wanted/needed to use before they expired. My shopping haul landed me a 46% savings. I am my mother's child, after all. ;) I forgot to say that while I was getting my neuropsych testing done at Vanderbilt, Mom made it down to our favorite place to eat and got me a raspberry macaroon. I kept it until Saturday when I devoured it and yet at the same time savored every bite of it.

Saturday afternoon, I watched the Tennessee Volunteers vs. the Florida Gators football game. I won’t lie – I snoozed through much of the first half, but was glued to the TV the second half. I was screaming at the TV “RUN” and I’m pretty sure my blood pressure was sky high. I couldn’t believe my eyes – our losing streak against Florida ended in a glorious 38-28 Vols win. It was awesome!!!

Sunday, my bravery returned. I wasn’t sure I’d be able to make it into church without having to use the walker – but guess what?! I did make it with only a cane. I didn’t do it alone though. God put people in strategic places to help me along the way – whether they knew they were helping me or not. When I first got out of the car, a couple came up to me and started talking to me. That loosened me up and I wasn’t so anxious. I was walking along when Jim came up beside me and walked with me. Again – easing my nerves and somehow allowing me to walk. We stopped and talked with Mitch, Carrie and Kaitlyn. An older woman came by and said “Oh, you got your hair cut!” I smiled and said, “Actually, no, I’m letting my hair grow! The last time you saw me, I was wearing a wig.” She couldn’t believe I was wearing a wig the last time. I told her that was a great thing because it meant she couldn’t tell it was a wig! I made it inside church without falling, without tripping, without slipping and without a walker. I didn’t have to hold on to anyone or have anyone hold onto me. It was just me, God and the cane. Confidence building!! On the way out of church – the same sort of thing happened, only it was Alex who walked out with me - she to her car and me to mine - and we talked the whole way, thereby distracting me “just enough” to have me walk with the cane without falling, tripping or slipping and without having to hold on to someone or having someone hold on to me. Confidence building. After church, Mom, Aubrey, Baby H, Little G and I went out to eat. Dad had to stay at church for a meeting. I walked into the restaurant and out of it only using the cane. My confidence (but not boastfulness) was climbing. I went to Aldi after lunch and walked in using only the cane. When I walked out and put my groceries in the car, I was pushing the cart back and an older gentleman said he had a quarter and he’d take the cart off my hands and save me some walking. I was thrilled by that. I then went to Kohl’s and this time ya’ll, God and I conquered it! I walked in, just a cane in my hand! I did use a shopping cart around the store, but I walked out and left the cart inside the store – what?!?! That is NOT me! I must admit, I had problems getting to the car. It was slow. It was painful. It was humbling. It was TOTALLY worth it. I was so slow and labored that an older gentleman asked if he could help me to the car. I kindly thanked him and declined. I had second thoughts about that decision. Maybe that was God giving me a lifeline. The gentleman asked several times if he could help me (I must of looked THAT bad!), but each time I declined. Maybe I should of accepted his offer. But then again, I do believe that I made the right decision after all. I’d never been so relieved to get to my car and sit down. But, God and I did it. God kept His promise and I didn’t slip, trip or fall and I kept mine and thanked Him profusely all the way home. I couldn’t wipe the smile off my face. It was hard and I wanted to give up and just crawl (yes, that thought has crossed my mind several times in cases like this), but I didn’t and I made it. Thank you, Jesus!

Monday, the forecast was for rain in the afternoon. I knew what I had to do. I had to park in the dreaded parking garage at work – one of my worst nemesis right now. OK, I didn’t have to park in the garage, but I didn’t want to have to walk in the rain. My walking is still SO SLOW that I would have been drenched by the time I got to my car. Plus, I haven’t gotten confident enough to walk with a cane in one hand and an umbrella in the other. I need my “spare” hand to help me balance – haha. So, I parked in the garage and I made it inside with NO issues. Praise Jesus, thank you God!!! At the end of the day, I thought about walking out with my co-worker, Debbie – or if she wasn’t leaving at the same time I was, I thought about asking her just to walk with me. But, at the end of the day, I walked out by myself. I prayed the whole way. My cane was drenched in sweat. I prayed that God would go before me, stand behind me and be beside me. I prayed He would keep me upright and that I wouldn’t trip, slip or fall. And lastly, I prayed that there wouldn’t be a lot of people around or cars coming through. My God is AWESOME. He answered every single one of those cries. To the point that, there wasn’t a car coming through the garage until I was safely almost to my car and completely out of the way of any cars driving by. All I could do was smile and say, “Thank You!!” It wasn’t a pretty walk to the car. It was labored and awkward, but I’ll take that over me being frozen staring into someone’s headlights or falling all over myself. :)

Today, I parked outside and made it in to work with minimal problems. A guy held the door open over me. I thanked him and then realized it was his wife who helped me last week in the parking lot. I asked him what his wife’s name is. He said Anita. Now I know her name. I asked him to tell her what a blessing she was to me. He said that she knows what having a hard time walking looks and feels like. She’s had both of her knees and her hip replaced. I thank the Lord for this chance encounter and for Anita. Walking was pretty good today. I turned my device up by.20 and now I’m at 3.20 volts on Frequency B.

Today, I walked around work and out of work with minimal issues. I had an appointment after work which I walked into and out of with only my cane. I went to Walgreens afterwards to pick up a prescription. Instead of driving through the drive-thru I went in and walked the length of the store with only my cane. I could have used a cart, but I didn’t!! I was/am so excited! I got my prescriptions AND a flu shot and walked back out to my car. I then went to Kroger. I did park by a cart and walk in and out with the cart.

Ya’ll, I have to say – when God gives me the confidence and bravery to try “new” things – I can’t wipe the smile off my face. I feel like these past few days, I’m starting all over again with the electricity. I’m not, really, but it kind of feels like it because I'm adjusting to everything again. But at the end of every day, I marvel – yes, I truly, utterly MARVEL that God allowed (and continues to allow) me to make it from point A to point B. He kept/keeps me upright. He kept/keeps me from falling, tripping or slipping. He's got me in the palm of His hand. I am supremely blessed. To God be all the glory. God's Got This!!

Friday, September 23, 2016

6 Month Post-Op Check-Up

Before I get too far into this post, I want to say that I cannot believe it's been 6 months since my deep brain stimulation. The phrase, "the days are long but the years are short" rings true in this case (except it's months, not years). I am incredibly blessed and humbled to be sitting where I'm at today. It's been a wild ride the past 6 months and the months ahead are gearing up to be the same, but I wouldn't trade anything. I'm growing deeper in my faith and trust and obedience to God and I'm constantly marveling at all He is doing in my life.

Yesterday (Thursday, September 22, 2016) started early – 4am early. I rolled out of bed at 4:05am, exercised, got ready and Mom and I were headed to Nashville for an 8:30am doctor’s appointment by 6:05am. It seemed to take longer to get there then to get back, but that was probably just because I was more nervous going than coming back. Mom brought along a book on tape, so that distracted me much of the way. By the time we hit Lebanon, TN we had run into our first major traffic jam. I know we’ve hit Nashville by their traffic jams, but Lebanon was a little too early for this!

When we did get to Nashville, it didn’t disappoint – there were traffic jams all over. I feel extremely blessed to live in Knoxville where the traffic jams (when there are ones) usually don’t take that long to get out of. I don’t think I’d ever survive in Atlanta, Los Angeles, New York City or Nashville traffic! As we were driving along, all the sudden Mom goes, "Look!". For whatever reason, there is a huge sculpture of a whisk on the side of the road:

Even with the traffic, Mom and I made it to the neurologist’s office with 20 minutes to spare. I don’t think we’ve ever done that before. :)

I checked in with the front desk and went to use the restroom. The minute I was done with that, I was taken back to get my vitals. I warned the nurse my blood pressure was probably going to be high because I was nervous about getting there on time. It was (but thankfully not the lower number) at 152/75. The nurse took Mom and I back to a room and within 5 minutes or less, Dr. T. was in. It was great to see him again. We chatted a moment and then got down to business. He noticed that my left hand and arm were a lot looser than before (that’s a good thing!). But when it came to my leg/foot, they were still tight. He repeatedly (OK maybe 3 or 4 times) asked me just to relax and let him do the work (in bending my leg), but I couldn’t. I told him about changing the settings and what happened with each. He seemed surprised that I was at a lower level. I think I had convinced him last time that the second I left his office I would be turning up the juice in the device – haha. He asked if I changed frequencies and I told him I had and that I was on Frequency B now. I told him that for the past two weeks I had remained on the same level – 2.60. But that above that, I felt drawing up of my toes. I also admitted though that even at 2.60 volts, my toes went back to curling under and my foot went back to turning in. I also admitted that walking wasn’t “perfect.” I told him of my fear in walking in wide open spaces where there is nothing to grab ahold of if I need to, to keep from falling. I told him about the “performance anxiety” I get when I think or know people are watching me walk (more on this later). He had me walk and he said he could see that my toes were still curling under and my foot was pulling in and he said that meant that I was on too low a setting. He listened to everything I told him and then made his suggestions. He programmed yet another frequency – “frequency C”. He said with this frequency he was going to interleave – alternate between frequencies. Just as a background: Frequency A has one “spot” active on it. Frequency B has 2 “spots” active on it (the one on Frequency A and the one on Frequency B). Dr. T. drew me a picture of how everything works.:

Frequency C would alternate between the two spots on frequency B. Dr. T. said that some patients see huge progress with this and it also saves greatly on battery power. So he programmed Frequency C. As he was doing that, his nurse stuck her head in and said that his 8am appointment just made it in 5 minutes after he/she was due. To which Dr. T. responded, “You mean, 35 minutes after they were do?” She apologized and said yes. She meant 5 minutes after the grace period. Dr. T. said he would go ahead and see the patient after he was done with me. So that’s how I got in early. ;) After the nurse left, he got back to programming. He said that he bumped my electricity up from 2.60 to 3.40.

His suggestions (which he also wrote down for me) are:
1. Stay on Frequency B at 3.40. I’m either to sit on this for 2 weeks at least or, if I need more electricity go up and sit on that for 2 weeks.
2. If suggestion 1 doesn’t work, I’m to go all the way down to 2.0 or 2.10 volts and sit on that for about 2 weeks at least.
3. If suggestions 1 and 2 don’t work, I’m to switch to Frequency C and sit on that for at least 2 weeks.
4. And if neither suggestion 1, 2 or 3 work, I’m to call him. 

He gave me complete freedom to once again “play” with the amount of electricity and the frequencies. He said I have a lot of freedom in this and there are lots and lots of levels and options I can play with. He said that I can tell people that he’s given me permission to experiment and that I cannot do any damage to myself. :) There is only so high up I can go and only so low I can go on the settings and I’m not going to hurt myself by experimenting. I’m a person that likes definitive answers, so I asked where I should be now and he said that that is different in each dystonia patient. There is no “right” time frame or “wrong” time frame. He said that he’d like to see me again in 3-4 months so he sent my scheduling coordinator, Patricia, in and we scheduled for January 31 at 11:30am (no more 8:30 appointment times…I can actually sleep in this time!). It was a great appointment. I left Dr. T. having a game plan and even more than that – increased hope!

My next appointment was with the neuropsychologist and it wasn’t until 10am. We were done with Dr. T at 8:45am. Patricia said that she would see if she could get the appointment bummed up, so we wouldn’t have to wait around. In the meantime, Mom and I went back to the waiting room. One thing about waiting in the waiting room - it makes me feel so much better about myself and makes realize how blessed I am because it could be so much worse. There are people in there that have devastating injuries or diseases. It almost makes me think I shouldn't be there. My problem is not a problem compared to most of the other people waiting.

While we were waiting, I saw my neurosurgeon, Dr. K. walk in with a bunch of people. Mom thought they may be going to a meeting. I don’t think he saw me, but it was still good to see him.

As we continued to wait, my left hand started to draw up and make awkward movements. When Patricia came back out to let us know the doctor was on her way over, I asked if I could see Dr. T. one more time (if he had a second), real quick to show him what my hand was doing. She said that she’d ask him. A couple minutes later, she came back out and said that his nurse would come and take me back soon to lower the 3.4 volts because Dr. T. said he probably raised it too fast and too high. Jessica, the DBS nurse, came and got me shortly after that. She was a godsend. She did more than adjust the level, she answered questions and she brought all the medical stuff to a human level and helped me understand it so much more. She said that if I’m experiencing “drawing up” or abnormal twitching or posturing that means that I have too much electricity and I need to turn the device down. If I’m experiencing things I did before the surgery: toes curling under, foot curling inwards that means I have too little electricity. I told her that sometimes I have really great days (1, 2 or more in a row) and then in the blink of an eye, I go right back to where I was before the good days. She said that means I need more electricity. The brain can get used to how much electricity it’s been given and become complacent. In these cases, it needs more electricity. She said eventually things will even out and I’ll be able to stay on one level, but even then, sometimes there will need to be a turn-up of the electricity for when the brain has become complacent again. Dr. T. initially had me at 3.4 volts. She took me down to 2.90. When I was still experiencing the abnormal movements, she took me down to 2.60 – where I was initially at when I came in. That got me a little sad. If Dr. T. said that I needed to go up, I wanted to go up! I told her (as I had also told Dt. T.) that since my left hand is not my dominate hand, I’m OK with it not being “perfect”. I’d rather have use of my leg and foot than have my hand be the best it can be. She said she understood that. She didn’t want my hand to be troublesome though. It could be annoying, but not troublesome. If I could still do things I needed to do with it and my concentration not be broken by it, she said it was fine. If it got to the point where I was only ever concentrating on it (meaning that it was more than noticeable, and couldn’t assist me), then the electricity needed to come down. We settled on a compromise: she brought the electricity back up from 2.60 to 3.10. So we still went down from the initial 3.40, but not so far down that I wasn’t happy about it. I asked her was the reason I didn’t see "fast" results in my leg or foot because they were farther from my brain. That’s when we started talking about time frames. She said that during the DBS surgery, patients with Parkinson’s or tremors see immediate results. Dystonia is different. She says she gets calls from patients every day saying that they don’t see any results yet and they are only a week out from surgery. She said patients start doubting themselves and the process because they don’t see instant results. Every dystonia patient is different. Some see results in as little as 3 months, some see results at 6 months, some at 7 or 8 months or longer. It’s a process. In a world where we can get something from Amazon Prime in 2 hours, we all want instant gratification and to see results right now. Dystonia neither works like that nor cares about time frames. DBS will work on the disease in time, I just have to give it time. I left Jessica with the device set at 3.10 volts and her business card. She said I could call her anytime with any question.

By the time I was done with Jessica, it was time to do the neuro-psych testing – oh what fun (I’m being sarcastic)! Shelby, a grad student, gave me all the tests. We did things a little backward by doing the testing first and then meeting with the actual neuropsychologist. It was the exact same testing as I had done a year ago before the surgery. It’s meant to push you to the very edge of your brain capacity and it does. The whole appointment, from testing, to the grading, to the meeting with the neuropsychologist took 3 hours.

It started out simple enough:
“What’s today’s date?”
"What hospital are we at?”
“What city and state are we in?”
“What county are we in?” (I knew this one, even though I don’t live there – yay me!).

And then it slowly got harder:
“I’m going to give you a list of words. Tell me as many of the words as you remember.”
This may not initially seem hard, but oh.my.goodness. – let me just say it was incredibly hard. Shelby repeated the words 4 times in different parts of the exam. I got a little better as I went along. I remember today some of the words: candle, famer, wagon, feather, paper…but there were like 20 words I had to remember and I got so frustrated when I couldn’t think of them.

Then there were tests like, “In 60 seconds, tell me all the words you can think of that begin with the letter “F”, but you can’t use numbers, places or people’s names." I did OK with that letter (although at the time, I didn’t think I did). Then she gave me the letter “A” and I completely blanked after the word “apple”. A – the easiest of letters (I would have guessed) turned into the hardest. I did think of other words, but nowhere near as many words as I had thought of for “F”.

Then I was given pictures of objects to identify. I got all of them except, I hesitated on “sea horse.” I did eventually get that one too, but I told Shelby after the test was done that the first word that popped into my head was “unicorn”. I knew it wasn’t a unicorn, but I couldn’t get that word out of my head.

The next test was Shelby telling me a story and I was to tell it back to her using the same language she used. I had done pretty well on this test last year, but this year, well right off the bat, I had problems. But she read it again a little while later and I did better and then once more a little while after that and that time I got it almost verbatim.: “On Monday, March 5 a title wave hit Miami. Although there was 2 million dollars’ worth of damage to the waterfront, only 7 people were injured and no one was killed.” The first time around, I said it was a hurricane and not a title wave. But the second and third times were great. The second time, I was a bit slow, but the third time I rattled it all off to her. Shelby commented that I was the only one of her patients that got the detail of it being “to the waterfront.” She was impressed and said that I got every detail correct. Yay, me!

Then came the “ink blob” test. Actually, I’m not sure that that’s what it was, but I had to identify objects and shapes that were the same. Then I had to trace lines going from 1 to 2 to 3 and so on. Then it was on to tracing letters A to B to C and so on. Then it got harder. I had to trace numbers and letters together 1 to A, 2 to B, 3 to C and so on.

Then it was time for the reading and color test. The words: red, blue and green were printed on the page but red was in green print, blue was in red print and red was in blue print. I had to say the color and not the word and vice-versa. While all these tests may not seem hard initially, believe me – they are! I got frustrated and my “type A” personality started to show! But I survived.

After all the testing was done, I went back out to the waiting room while it was all graded. Once it was, Dr. B., the neuropsychologist came and got Mom and me and led us back to get the results. In some areas, I declined slightly, but in other areas I improved. All-in-all she said it was a good report. She asked if I thought my memory was better or worse after the surgery. I told her that I felt like my short term memory wasn’t what it used to be, but my long term memory seemed the same. Mom told her that she thought I had an exceptional memory and if any memory loss had taken place it only brought me down to a “normal” range. She told the doctor I remember every detail of miniscule things. I told the doctor my memory was for the “useless” information, the odd, weird stuff. The doctor did have me do one test for her again right then and there. The words that Shelby had asked me to remember, Dr. B. asked me to pick out from a list she rattled off. I did and she set it aside for a while. Later she came back to it and said that I improved by 1. She said in the test that Shelby had given me, I missed two, which in their expertise made me “below average” for that test, but when the test was repeated I got one of the two correct, which put me in the “average for my age” category. The other one that I eventually missed, I hesitated on, which told Dr. B. that I had the answer – that I had remembered hearing that word and it was in my brain, but I eventually said, “no” as my answer anyway. Mom piped up then and said, "what about extraneous circumstances… she got up at 4am to get here, she’s probably hungry, she’s not a great test taker…… Don’t you take those in to factor?" To which Dr. B. enthusiastically agreed with which is why she said that they can’t always take what the tests say for face-value, They have to meet with the patient and see what’s going on and that’s why she gave it to me again. She told me I was not to leave her and the room thinking in my mind that I had failed in any way, because I had not and results are what they are. She said I had no sign of Alzheimer’s disease and that all the information was there in my brain, it was just slower in getting it out. She acknowledged that she knows that is very frustrating. She did back me up though on my long term memory being great. She said I got every detail right in the story. I excelled at naming names. I told her this was because Shelby gave me the task of naming as many boys names as I could within a minute. I have three brothers and a dad. I have 13 boy cousins. I gave Shelby 23 boys names in 60 seconds. Dr. B. said that I was contextualizing things like I would do with a story. I did the same when asked to name animals. I went from thinking of pets, to thinking of animals at the zoo to thinking of ocean animals. As long as I have a story to remember things by, I’m usually OK. I even told her that in high school and college, I would memorize notes for tests by putting them to the tune of “Amazing Grace”. I definitely have a more story-like, song-like way of remembering things as opposed to actually spitting back facts. I’m a horrible test taker though, I always have been, so it didn’t really surprise me that I got tripped up on some things. Dr. B. described me to a “T” when she said, “After Shelby gave you the letter “A” and told you to name as many words as possible that begin with the letter "A" and after you said “apple” did you begin obsessing over the fact that you couldn’t think of anything else?” Yes, why yes, I did! Dr. B. said that’s what she thought had happened and that by obsessing over it, I ate up 20-30 seconds of my allotted time. During my appointment with Dr. B., Jessica, the DBS nurse, stuck her head in and asked how I was doing. I responded, “Fine, but I think I’m going to turn the electricity down.” She smiled and said that that is what she and Dr. T. thought I would do. I left it at 3.10 all day yesterday, but this morning, I turned it down to 3.00. I may need to turn it down even more, but we’ll see. I left the neuropsychology appointment more fascinated and amazed than ever at how the brain works.

After that appointment, Mom and I had exactly an hour before my motor skills appointment. We grabbed lunch at Panera Bread and talked about the day so far.

The motor skills test was done by Jen, the physical therapist that did my test before the surgery. I’m glad I got a familiar face! I should say, obviously, Dr. T. is a familiar face, but Dr. B. was a different neuropsychologist than who I saw before and Shelby was a different grad student then who I saw before.

Right off the bat, I told Jen that I have performance anxiety. I didn’t know how to describe it any better. I actually mentioned this to both Dr. T. and Dr. B. earlier. They both acknowledged it, but couldn’t really give me concrete answers as to how to get over it. What I mean by performance anxiety (and I know a lot of you reading this have seen it!) is: I can be walking pretty well and the second I see someone watching me walk or feel like someone is watching me, I trip up. My muscles tense up and I have the overwhelming feeling, I’m going to fall. I have come up with one technique that seems to work sometimes: I wear sunglasses. Yeah, go ahead and laugh, but somehow – even though I can still see people and people can still see me – it gives me a sense of a barrier or shield and I can walk without feeling like people are watching me. I also just pray like crazy. But I asked Jen if she knew of a way to get rid of the anxiety. Her best answer was to just keep doing it until I was comfortable with it.

I kind of almost wished that Dr. T. hadn’t turned up the electricity in my device before I saw Jen, because by the time I saw her, I wasn’t as “good” as I had been the past couple of weeks. I was more rigid and stiff. However, at the same time, I’m happy that she got to see what she saw. She asked me questions and then recorded me doing certain things, moving certain ways, talking, drinking water and then the dreaded walking. First, I walked without the cane. I told her I could do so much better and had done so much better in the past two weeks. She then suggested I walk using the cane – which I did. It still wasn’t up to my standards, but oh well, it was what it was. She commented that she thought I was a lot faster than I was last year. I told her that at times, I can be very fast (this was NOT displayed yesterday in any way!). I’ve had co-workers comment that they thought I was using the walker because I was walking so fast. However, that’s not really the norm – yet! But Jen said she definitely saw that I was faster and able to move better than last year. She (as well as Dr. B.) asked how I was feeling emotionally. While there are days that I definitely feel down and “woe is me”, I told her that I feel so much more joyful and happy. This surgery has given me hope again, when I thought there wasn’t any. I have the overall feeling that things will get even better from here. I’m happy. She was pleased with the appointment. As I was leaving, I overheard her tell a co-worker, “Boy that appointment was fast!” I smiled, thankful for fast. And fast it was. It was supposed to last up to 2 hours and I was done in one.

Mom and I left at 3pm Central time (4pm our time – Eastern). While there was major traffic, we still got out of Nashville rather quickly. I kind of wanted to stay as I saw Carrie Underwood was in concert that night – but I knew there wouldn’t be any tickets. I did however want to get back to Knoxville in time to watch the season premiere of “Chicago Med.” We rolled into Knoxville right around 7pm. It was a long day. It was a full day. It was a good day.

I had asked that God would be all over the day. That everything that happened would be ordained by Him. And it was – a thousand times over – it was. I saw God’s hand over each and every aspect of it. It wasn’t lost on me that it was the first day of Fall. I prayed that on the first day of Fall I wouldn’t have any falls and I didn’t! Sometimes, life gets so overwhelming that I forget to thank God for the little things, but it’s in the little things that I sometimes find the greatest joys. I had the song, “Trust and Obey” stuck in my head all day. I can only say it came from God, because I didn’t hear it anywhere. Trust. It’s something I struggle with on a daily basis. To put 100 % trust in something or someone or some process is exceedingly hard for me to do, but little by little, I’m making progress. Obey – this is also something I struggle with on a daily basis. I want to be “my own person”, but I must obey other’s laws. I must obey the doctors. I must obey my parents. I must obey my boss. I must obey my body. I must obey treatment. I must obey protocol. God’s working on me in this area too. While yesterday, I was confused as to why I had that song playing on a rolodex in my head, today it’s become perfectly clear to me why. God wants me to both trust and obey more. I’m never going to be perfect. My walking will never be perfect. Perfect doesn’t exist until we go to Heaven. God’s allowing me to grow leaps and bounds through this process of learning to trust and obey Him in everything. Everything was, is and will be OK because after all, God’s Got This!!

Tuesday, September 20, 2016

Tune-In Tuesday / Shouting From The Rooftop: September 20

After a wonderful “Shouting from the Rooftop” day last Tuesday, I experienced another one on Wednesday and another on Thursday and another on Friday and Saturday and Sunday and Monday and today. This means I’ve officially had 7 days straight of “shouting from the rooftop” experiences. While each day had its own worries and wasn’t perfect (who ever has a perfect day?!), I’m rejoicing in the past week. I only want to give praise to Jesus, because I know only HE allowed me to have such a wonderful week. He gets all the credit.

I’ve always been told, “If you pray for rain, you better carry an umbrella.” So, why I was surprised when I woke up on Wednesday and used just the cane to walk into work again, is beyond me! I prayed that I’d be allowed to do it, so I should have expected it! But I didn’t. Forgive me, Lord. I also didn’t put pressure on myself. I told myself that when I got to work, I would let God guide what I did. I had no clue whether I’d just grab the cane, or be led to remove the walker from the car and use it. When I got out of the car at work, without thinking or making it a big deal, I left the walker behind and walked with the cane. I made it inside work without any catastrophes! I made it around work without any catastrophes! I made it back to the car without any catastrophes! I made it. Just me and God. With NO walker. It made me think, could I make it into church that night with just the cane? I prayed again and let God work. Again, I had no expectations. I didn’t know if I’d walk in with the walker, or just a cane. But guess what? When I got to church, I heard God saying, “You can do this. Don’t let outside factors deter you. Keep your eye on the goal and walk.” And walk I did! I made it in without tripping, without slipping, without falling. I made it around church without tripping or slipping or falling and I made it back out to my car the exact same way. God is good!

Thursday, I did it again! I did NOT use my walker and I made it safely in, around and out of work on the cane. I was blown away by God’s goodness.

I’m beginning to feel like it’s groundhog day around here, because the same thing happened on Friday. Just the cane. NO WALKER! How did I get this blessed?

Saturday. Saturday was epic for me. It was the day my church had its fall festival. I was in charge of driving the lawnmower train. I LOVE, LOVE, LOVE this job. I look forward to it every year. I really do! Saturday, I don’t know what possessed me (well, actually I do, it's God!), but I got out of my car and walked in the parking lot without a walker. OK, for most people, this is no big deal. I get that. I do, really. But for me, I was left speechless and in awe of God’s power. I have not been able to do that without a walker in 11 years. 11 YEARS!!!!! I had my cane of course, but if you can’t tell already, I was ecstatic. I had no idea I could or would do that, but God allowed it. I felt free!!!! I had an absolute blast driving people around on the train, but I was a little concerned that sitting so long would get my walking all messed up again, but God took care of that. I had no problems. Also at the fall festival, there was a climbing wall. Last year, I got it in my head that I would love to do it. I’m terrified of heights and thought that would cure me. I didn’t get to do it last year because they had torn it down before I got done with my responsibilities. This year, I told Micah (one of the guys from my church helping with it) that I wanted to do it and to come and get me before they tore it down. As I was driving the train, towards the end of the festival, he said that he thought they would be tearing it down soon and asked if I still wanted to do it. I did. I got a substitute to drive the train around and “suited up”. One of the guys ran and got my dad, so that he could see with his own eyes I was doing this. And then, I failed. Yep, I failed, but then again, I didn’t really. I found out real quick, I’m not very strong at all. Haha. I didn’t even make it halfway up – and not because I was afraid of the height – it was because I didn’t have the strength to pull myself up. It looked a lot easier than it actually was!! But you know, I wasn’t even mad or disappointed at myself (like I thought I would be). I was actually kind of proud of myself for trying. It was an epic moment. My dad actually filmed the experience (which I didn’t know he was doing!). What I got from that video was that I was having a blast. I had the biggest smile on my face and was laughing the whole time. So, while I didn’t conquer the climbing wall, I conquered what mattered most. I conquered fear. I conquered the voice inside me that said I couldn’t or wouldn’t do it. I tried and that’s the triumph! After the fall festival, I ran errands and more epic things happened. I went to Aldi. When I got to the store, I felt God saying that I should try walking in without my walker. And guess what? I did! I walked to the grocery carts without my walker. I also went to Walgreens to pick up some pictures. I walked in with just my cane. I walked around the store WITHOUT a cart. Saturday was such an epic day, I was totally, completely exhausted that night. I slept like a baby!!

Sunday was a little more problematic, but still a really good day. I sat with my brother, his wife and my 5-month old niece/goddaughter on the back row. We had communion, so I had to walk the length of the aisle up to receive it. It turned out to be a good thing. I had (once more!) walked into church with just a cane and left the walker in the car. I walked up to communion with minimal issue. It was on the way back to my seat, that I got performance anxiety. My brother held on to me, so I wouldn’t fall and we could walk faster. It was pouring down rain when we left church and my brother once again held on to me so that I’d make it safely to the car – which I did. We went out to eat after church with my dad and I walked into the restaurant and out of it with my cane and no one had to help me.

Yesterday (Monday) was not a very good walking day. I still made it in to work walking with the cane and no walker, but I went out to lunch with a friend/co-worker and had some issues. I didn’t fall though. When I walked out to my car at the end of the day, I was having visible issues. It was because, once again, I got performance anxiety. My eyes made contact with the eyes of a woman who was sitting in a car. And just like that, I couldn’t walk without issue. I must have been really bad, because the woman got out of her car and walked over to me and asked if I needed help. I told her kindly no, that I needed to do it by myself. I didn’t tell her she was making me nervous! I thought she’d go back to her car. A part of me wanted her to go back to her car! But she didn’t. She didn’t touch me, but she did walk with me. A part of me was saying to myself that she was making it worse, but then another part of me was thankful for the “distraction”. I told her that there was such a thing as the best distraction. When I’m not 100% focused on my walking, I walk the best. I have to concentrate, but then again not so much that I psych myself out. This woman ended up being a huge blessing and my perfect distraction! She told me that she had seen me on several occasions walking with my walker as she comes every day to pick up her husband. As I made it to my car, I thanked her for being my distraction. As I sat in my car, it struck me that I didn’t get her name!! This only furthered my thinking that she was God’s instrument to help me to the car without falling. It was a defining moment for me. I didn’t get what I wanted (to be left alone to get to the car by myself), but exactly what I needed (someone to walk with me, to be there just in case I were to fall) and I have only God to thank for that! While Monday was not my best day walking, I reflected on the day last night as I lay in bed and God made me realize, I didn’t fall. Not once. I did not fall. So, Monday wasn’t a bad day after all. It was just a day, but it was a day I didn’t fall. My confidence was shaken, but not destroyed.

This morning as I drove to work, I asked God to make me brave and courageous. I didn’t know if I’d use the walker. I was really shaken still from yesterday and didn’t want to get “stuck”. But you know what? When I got to work, I walked without my walker from the parking lot to my desk. I walked in spite of being shaken by the thought that I might fall. I had an appointment that I had to go to and I was nervous that this “disruption” in my schedule would throw my walking off. I’m weird like that! But neuro-pathways are weird! I’m trying to rebuild mine and sometimes any little disruption literally makes my walking tough again. But, God didn’t allow me to get “disrupted”. I asked Him for protection – to build a mighty fortress around me – to go before me, stand behind me and be by my side. I asked that I wouldn’t get distracted by others coming and going from work and that I wouldn’t slip, trip or fall. And you know what? He delivered on every level. Today I ended up walking into and out of work a total of four times and at no point did I use my walker or fall. Not once. God hit me this today: I have walked for an entire week WITHOUT A WALKER!!!!!!!!!!!!!!!!!!!! This blows my mind. An entire week. Thank you, Jesus. I am forever grateful.

I don’t know if tomorrow I’ll have to use the walker again. I may have to. I may not. I’m not going to allow myself to feel like I’ve failed if I do have to use it. I don’t know what the future holds, but I know my God intercedes for me, protects me and builds me up. I am completely blown away by the goodness He has bestowed upon me this past week. I didn’t have any clue what would happen, but I knew that whatever did happen was all a part of God’s plan.

Thursday, September 22, I head back to Vanderbilt for my six-month post-op check-up. I’m nervous and anxious about it. I’ve wondered what will happen on that day. Will I get performance anxiety again and have to use my walker? Or will I be able to walk with a cane? I debate back and forth in my mind what I want to happen that day. The debate is whether I want the doctor to see me at my worst or see me at my best. I have my reasons why I want him to see both. I get so caught up in this thought process that I drive myself crazy, so I’m taking a deep breath and praying my heart out. I relinquish control (not that I really had any to begin with!) and hand the reigns over to God, so He can do His thing. I will not worry. I will not be afraid. I will trust in the Lord and I will always, always, always remember that GOD’s GOT THIS!!!

Tuesday, September 13, 2016

Tune-In Tuesday / Shouting From The Rooftop: September 13

Full disclosure: I started writing this post last night (Monday), only to have God turn everything upside down and do amazing things this morning. :) So now, I’m rewriting the post!

Last night I wrote: “This past week has been wonderful. Oh yes, there have been times that weren’t so wonderful, but overall it has been. I’m thanking the Lord for this. While I haven’t walked miraculously cane and walker free, I’ve felt freer than I have in a while. I decided that I would leave the voltage in my deep brain stimulation device alone and not turn it up or down. I only have a week and half to go before I head back to Vanderbilt for my 6 month post-op check-up, so I did debate playing with the voltage again, but in the end decided to leave it. It remains to be seen whether that’s a good or bad decision on my part. ;)"

In all honesty, I thought I’d wake up today and do exactly what I’ve been doing the past week: use the walker to walk into and out of work from the parking lot and then use the cane to get around work. I did leave the voltage at 2.60 on Frequency B. I didn’t change anything in that respect. But this morning God gave me just enough feistiness, just enough braveness, just enough faith, and just enough courage to walk without my walker from the parking lot at work inside to my desk. No walker! There was a moment, after taking a couple of steps that I thought I should turn back and get the walker from the car. But it was a moment – brief. Then the thought crossed my mind, “You’ll never know what you can do if you never try.” And then the song, “Whom Shall I Fear” by Chris Tomlin started rolling around in my head:

“I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side”

I took one step and then another and then another. I was slow and methodical. One of the facilities guys (Lou) was out and he shouted to me and asked if I needed help. I shouted back, nope! When I got closer to him, I thanked him for the offer but explained that I needed to do it on my own to prove to myself I could do it. And I did do it, without falling. God got me safely inside work. I looked back out at the distance I had gone. To most, it is not far at all, but to me, it was like crossing the Red Sea. Thank you, God. We did it. No walker. Just me and God. He allowed me NOT to get “stuck”, NOT to fall, NOT to really even stumble at all. He allowed me NOT to get overwhelmed or consumed by my “you can’t do this” thoughts. He allowed me NOT to psych myself out. He allowed me to walk. It was now or never and the moment was NOW.

This gives you a little example of the distance I walked. I'm taking the picture from the door of work and that's my silver Honda Fit.

I thought it amazing this morning when I read the Bible verse of the day on the Bible app I have on my phone. It was definitely God speaking directly to me.

“Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord himself, is my strength and my defense; he has become my salvation.” Isaiah 12:2

God spoke. Then He gave me just enough of what He knew I needed to take a step of faith. I’m so happy I did not give in to my desire to turn back and get the walker. It would have been so easy to do so. But I knew, if I never took a step of faith, I’d never reap the rewards. So step by excruciatingly slow step, I had faith that He’d keep me safe. And He did. He also allowed me to walk all around work and walk back out to my car WITHOUT a walker. Again, God had my back. He didn’t let me fall or stumble. I give Him all the praise and that’s why this “Tune-In-Tuesday” post is also a “Shouting from the Rooftop” post. God is awesome.

I don’t know what tomorrow will hold. Maybe I’ll be back on the walker, but I’m choosing to rejoice in THIS day and the joy God has brought me in it.

The next three paragraphs are what I wrote last night.

After writing last week’s post, it struck me in a tangible way how far I’ve come. I was sitting at my desk at work on Wednesday and all of the sudden it struck me like a bolt of lightning: I have the use of my left hand back. I’ve had it back for months now, however, I like to think the moment on Wednesday was another gentle reminder from God that He’s got this. He took my hand from being completely paralyzed (I’m not sure if that’s the right word because I could feel my hand and arm, but I had no ability to move them.) to working again!

I have to be happy with what I have now. Yes, I’m still praying for the miracle of being able to walk without a cane or walker, but even if God chooses not to give me that miracle, I must, must, must thank Him abundantly and fervently for allowing me to be able to walk better than before the surgery. I still use a walker to get in and out of places. As one friend put it, it’s my “security blanket”. I have to agree, it is. It does amaze me though how giddy I get when I can walk with just the cane. If you’ve never had an ability to do something and then lost that ability and then gained it back again, I don’t suppose you’ll ever really “get” what I’m talking about, but that’s OK. You’ll just have to trust me – it’s an AMAZING feeling. As I told someone recently, I have to treasure and store up the memories of those good walking days for days when my walking is not so great.

This past Friday night, Mom, Dad and I went to see “Mama Mia” at the Cumberland County Playhouse. With Dad’s assistance, I walked into and out of the Playhouse with just a cane. He noticed that I was walking better. I still have problems walking on downslopes though and he noticed that as well. But, I am improving. It’s so, so, so much easier to go places and do things with a cane then with a walker. Dad asked if I was ready to run yet and my answer was, “not yet”. However, while I was watching the play, all I wanted to do was jump up on the stage and run around. I really felt like I could do it too! But at the risk of getting arrested, or at least thrown off the stage, I restrained myself from doing so. ;)

I head back to Vanderbilt on September 22. I have NO idea what to expect. I have no idea if I’ll be able to walk in without a walker. I have no idea what I really want: do I want to walk my absolute worst so the doctors can see and adjust things, or do I want to walk my absolute best so they can see how I’m improving? Will they say that I'm improving or will they have wanted to see more? Should I be farther along in recovery? I have no idea what the doctors will say. As you can see, I have some (or a lot – there are more that I haven’t written here!) anxieties about the appointments, but, I know as much as anyone else it does me NO good to worry about any of it. I must “not be anxious about anything, but in every situation, with prayer and petition, with thanksgiving present my requests to God.” Philippians 4:6. I must remember that God’s Got This!!

Tuesday, September 6, 2016

Turn-It-Up Tuesday: September 6

This week has been one of ups and downs, but I’m growing in faith and that’s what matters most.

After turning the electricity down by .20 volts last Tuesday, I was pleasantly surprised. My leg and foot curled back up, turned in and did all the things it did before I had deep brain stimulation (this was not the pleasantly surprised part!), with one rather huge exception – I was actually walking pretty well. I was not expecting that.

Wednesday night, I got home from church, where I had just told someone that I didn’t feel any effects yet, only to walk outside to the mailbox with nothing but my own two legs and feet. Grant it, I did walk on the grass (which is very much like walking on the sand for me), but I didn’t have a walker or a cane with me! And that all transpired because I was too lazy to get my cane out of the car and I didn’t want to drag the walker out with me.

By Thursday, I was “shouting from the rooftop” again. On that day, I walked from one building to another at work with just my cane. I walked to and from my desk at work to the kitchen/break-room WITHOUT ANY ASSISTANCE. I carried my cane with me (for that “just in case” moment), but I carried it, I didn’t use it. It was awesome. It’s one of those “glimpses of hope” moments that God so graciously bestows upon me when I start feeling like nothing’s happening. God’s not dead. He’s always, always, always working – sometimes, front and center, sometimes in the background, but nevertheless He’s working. I’ve also been reminded this week that He’s always there. He’s walking beside me, behind me, in front of me. He’s there.

Today, I did turn the electricity back up by .10 volts. I still have time to play with it before I go back to Vanderbilt and since my foot and leg are now turning in again, I decided to see what being on 2.60 volts of electricity will do. Last week I went down by .20 volts, so I’ve actually never been on 2.60 volts on the B frequency.

I’ll see what it does. Today hasn’t been the best walking day, but I’m beginning to realize the days I do adjusting to the electricity are never really great walking days. When I got in to work this morning this was awaiting me on my desk:

I don’t know who it’s from, but thank you to whomever gave it to me!

My hair continues to grow!

Friday was good. Work let out at 2pm so we could get the Labor Day weekend off to a fantastic start. I got to see my niece, Little G, for about half an hour and that always makes for a great day. Later that afternoon, I started reading a book that my friend Kristen let me borrow. I had actually asked for it for my birthday back in June because I had read a review on it and it sounded like something I would like. While I didn’t get it for my birthday, I do believe it’s because I wasn’t supposed to read it until now. The book is called, “When Breath Becomes Air”. I thought it was going to be a sad book. I wasn’t sure I could handle sad on Friday, but, I started reading it and I couldn’t put it down. I thought I knew what the book was about – I thought wrong. I knew it was written by a neurosurgeon and that he had died. That’s about it. Dr. Kalanithi was the age I am now (36) when he was diagnosed with metastatic stage IV non-small-cell EGFR-positive lung cancer. The book blew me away. Maybe it’s because of where I am in life. Maybe it’s because of my love of medicine and my faith in God. Maybe it’s because I found myself in between the words on the pages of the book. Maybe it’s because God is working on me. I don’t know. All I know is that this book has (and I believe will continue to have) had a profound effect on me.

I have to share this one part of the book:

“At some point, then, I began to do a little bargaining-or not exactly bargaining. More like: “God, I have read Job, and I don’t understand it, but if this is a test of faith, you now realize my faith is fairly weak, and probably leaving the spicy mustard off the pastrami sandwich would have also tested it? You didn’t have to go nuclear on me, you know…”

OH.MY.GOODNESS. I don’t have cancer (which I am exceedingly beyond grateful for!!), but that paragraph – it was like I was writing that!!

Saturday was a relaxing day (sleeping in and going to bed early), sprinkled with the “weekend errands” that always exist. Sometimes the mundane is just what a soul needs. It struck me Saturday night that when I have to get things done, I get them done. Modified, maybe, but I do get them done. I can’t thank the Lord enough for those mundane days!

God also gave me an epiphany on Saturday. It hit me like a ton of bricks. It was this: I have not been asking God (recently) for exactly what I want. Like: “Hi God. It’s me, Stephanie. I want to walk again. I want to walk WITHOUT a walker and WITHOUT a cane. Can you do this for me by September 22? I’m asking. I’m begging. I know I don’t deserve it, but here it is. Please, please, please. I do have faith that you can and do perform miracles. Please forgive me for the moments my faith lacks.” Oh, don’t get me wrong – I pray. But lately, I’ve gotten tired of asking for the same thing. I ask for God’s will to be done. I ask to just be able to use the cane and not the walker. I ask different things, but I haven’t recently been asking straight out for Him to heal me and allow me to walk without any assistance. That may surprise some people. It’s just that I get so tired sometimes of asking. God says "ask and you shall receive", so I’m asking. Bluntly, boldly, selfishly. I’m asking. Now, I know, just as much as you do, that God may not answer like I want, but at least I’m asking and He knows exactly what I want!

Sunday. Well, Sunday I learned a lot and in the most unexpected ways! Attendance was rather low at church due to the fact that a lot of members (including my mom and dad) were at the Grace Lutheran Family Retreat up at Fontana Dam in North Carolina. But that didn’t stop God from working! While I used the walker to get into church, I set it on the back wall in the Family Life Center and opted to just use the cane. I knew we had communion. We do processional communion in the 11am service. I was sitting next to my friends Brian and Whitney. I knew that they would help me get up to and back from communion if I needed help, but that they would also let me try it on my own if I so desired. I said a prayer that I’d make it up to communion and back without falling. All went well until it was my turn to receive the Body of Christ. I somehow managed to trip and bump into the plate Pastor Mark was holding. Let me say right now, Pastor Mark has cat-like reflexes!! Not only did he catch me, he caught the plate too! Way to go, Pastor Mark. Crisis averted. It could have been a lot worse! I made it back to my seat. God answered my prayer - I didn't fall, but maybe I should have been just a tad bit more specific in my request. ;) This was not at all how I thought communion would go, but somehow just how I needed communion to go. I don’t even know how to explain that last sentence. It’s just that God was there, as He always is in communion, but He was also there is His servants. Pastor Mark and the elders, the communion helpers and Brian and Whitney and all those that dined on His body and blood.

The music at church spoke to me on Sunday as well. To be honest, the music has been speaking to me week after week after week. After the service, I went to tell our worship leader thank you for bringing God’s Word through song. We started talking about the music and our day-to-day struggles, physical ailments and “When is God going to open the door I keep knocking at?!”. I saw God in John and the conversation we had. Again, it’s exactly what I needed when I needed it. John left me with a question: What if God chooses NOT to heal? I’ve heard this many, many times before, but sometimes it takes a conversation you never expected to have to make it hit home. What if God chooses not to heal? Will I be OK? Yes – emphatically, I say – I even shout - YES!!! I won’t like it one bit. I’ll fight it. I’ll ask why. I’ll have pity parties for myself. But emphatically, yes, I will be OK. I’ll be even more than OK.

When I got home Sunday after church, I read an article in my local newspaper. It was taken from the Associated Press and written by Nicole Winfield. It was titled, “Mother Teresa: A saint despite spiritual ‘darkness’”. Many of you may already know this, but I did not:

Mother Teresa “felt so abandoned by God that she was unable to pray and was convinced, despite her ever-present smile, that she was experiencing “the tortures of hell”. For nearly 50 years, Mother Teresa endured what the church calls a “dark night of the soul” – a period of spiritual doubt, despair and loneliness.”

Again – just what I needed when I needed it. I have my own internal battles that I try to keep hidden from most of the world. While they may be hidden behind a smile, God knows they are there.

Monday, I had off of work for Labor Day. I cleaned the house. There’s “spring cleaning” – there should also be “fall cleaning”! I scrubbed toilets and microwaves (although not with the same scrubbing materials!). I dusted. I vacuumed. I sorted through paperwork. I ran the dishwasher. I hung pictures. I labored on Labor Day. And I only fell once! Actually, I wouldn’t even call it a fall. I took a knee. Literally, I did just that. I landed on one knee on the carpet. No injury, no being upset. I just took a knee.

God knows that sometimes it’s so much easier to write about my feelings then to share them face-to-face with people. I’m extremely introverted with a slice of extroversion thrown in for good measure – ha! I can be extremely extroverted at times, but that’s not my core being. I have to work at it. Writing is a refuge for me. I’ve had many people say that I should write a book. I’ve told those many people, I have nothing to say. But maybe, while I don’t have anything to say, God has something to say through me? So, I’ll let the Lord lead me. If He so desires, I may start writing a book. It may be a book no one will ever see. It may never be shared with anyone or even published. But then again, maybe it will. Only time will tell. So, now that I’ve written a mini book here just now, I’ll call this a post and say God’s Got This – all of it, the good, the bad, the ugly, the mundane, the beautiful and ME – He’s got me. On this I rest.