Tuesday, January 31, 2017

Turn-It-Up-Tuesday and Return to Vanderbilt: January 31

Today I returned to Vanderbilt. After a not-so-great day yesterday that resulted in some quick, unexpected changes, today turned out to be pretty darn good. Thank you, Jesus!

My appointment was later in the day (11:30am/12:30pm Eastern), and I gained an hour going there. This meant I didn't have to get up as early as I've had to in the past. I kept to my regular work-day get up time, got up and worked out on my stationary bike. This is both good for my body AND mind. ;) I also tried registering online to be a bone marrow donor. It turns out though that I'm not qualified since I've had brain surgery before - who knew?! :( Obviously, not me, but, at least I tried. I got ready and for once my hair actually did what I wanted it to do! It was just the right amount of curly. ;) My friend, Annie was gracious enough to give up her day off and go to Nashville with me. She picked me up just before 9:30am. We had a great trip over and by the time we arrived it was 61 degrees out. I'm glad I wore layers! We arrived with half an hour to spare, but what I love about Vanderbilt (at least the neurology clinic) is that they can usually get you in early and they did! We waited probably less than 5 minutes before we were brought back. I brought Annie with me because I could go to these appointments by myself, but it's always good to have a second set of ears. My blood pressure was again a little high, but I'm convinced it's because I get nervous. They should always take it after the appointment. ;) We were led back to the same room I've been in before and waited only a couple of minutes before there was a knock at the door. It wasn't Dr. Tolleson though. It was one of his residents, Dr. Nage. I had never met him before, but he was super nice, didn't wear a bow tie and had cool socks. ;) He asked several questions and asked how I had been doing. Somewhere in the conversation my aversion to walking in front of people (especially doctors) came up. He said that would come later in the appointment - ha! He did the neurological tests and then had me walk for him. I did, begrudgingly. I know that's why I go to these appointments, but it's seriously one of the most stressful things for me! I'm such a perfectionist that I want to go running into the appointment and be all healed, but it's a slow (sometimes excruciatingly slow) process!! Anyway, I walked for him and didn't fall. Mission accomplished - at least for the moment. He warned me Dr. Tolleson was going to want to see me walk too. Then he started looking at the settings on my deep brain stimulation device. He started looking concerned and I asked if everything was alright. He said it was, but I wasn't convinced. He completed his part of the exam and said he was going to go get Dr. Tolleson, fill him in on things and that they would both be back in a few minutes.

After a few minutes passed, Dr. Nage returned with Dr. Tolleson in tow. I don't know how we got on this subject, but bow ties came up. Both Dr. T. and Dr. N. are young and neither was wearing a bow tie but they both agreed that it is kind of a neurology thing. I told Dr. Nage that I thought he had cool socks and I told Dr. Tolleson that he had a cool tie on. Dr. Tolleson at first thought I said HE had cool socks on and immediately looked at his socks - which were just plain navy blue. I told him that I said Dr. Nage had the cool socks and he had the cool tie and he just laughed.

Dr. Tolleson, like Dr. N., wanted to see me walk. So, for the second time that day, I walked in front of doctors who were watching my every move and I DIDN'T FALL. I actually walked pretty well. I had little issues, but, by my standard, I walked pretty well. Dr. T. had me come back in the exam room and he did the neurological tests that Dr. N. had just done to see for himself what Dr. N. had reported to him. Then he got out (what I call) the master controller to my deep brain stimulator and started adjusting settings. I found out what Dr. N. was looking so perplexed about. It turns out Dr. N. didn't know how to adjust this one setting, so it wasn't giving him the data he was looking for. So, I really was OK! Dr. Tolleson played with all kinds of settings. He asked me if I felt things at different times that he adjusted. On one of these particular incidents, he asked if I felt anything and I said I didn't, but followed it up with, "but this is coming from the girl who told you last time (in October) that I felt something and you informed me that my device was completely off." He immediately laughed at that, because it was true! He adjusted more. At one point, he asked if I was frustrated. He said, "You look frustrated". I admitted I was. I just want it to work! After more adjusting, he had me walk again. I think I walked 3 times in front of the doctors in the hallway going back and forth and twice in the exam room itself. Maybe my fear is subsiding a little. What he was looking for was to see if my foot turned in while I walked or if it laid flat.

It was at today's appointment that I got to see even more of Dr. Tolleson's personality. We are more alike then I initially thought. I always thought he was very conservative when it came to how much electricity should be used and that he was very serious. I started to see a softer side of him at my appointment back in October and that continued at this appointment. I've ALWAYS liked him, but at the past two appointments (including today's), he's spent more time listening and adjusting and playing with frequencies. He's spent more time talking with me. Maybe it's the fact that I didn't die during surgery. Maybe it's the fact that every time I see him, I reiterate that I would do the deep brain stimulation surgery over again in a heartbeat. I seriously from day one have had no reservations. I'm happy (if somewhat frustrated at times!) with the results. I do remember him telling me in the very beginning of all of this that I'd be one of the youngest patients (if not the youngest) he would refer for deep brain stimulation if it came to that. It might also have to do with the fact that we are the same age. Maybe he had many reservations or wasn't sure how things would turn out - maybe that's why I got the sense that he was a serious, conservative type, but today - today I learned differently. I flat out asked him at the end of the appointment, if he were me, what would he do. He admitted that just like me, he wants things to be perfect. He said that if he were in my shoes he would be just as frustrated and impatient and he would probably skip to the highest setting and sit on it. See, I KNEW I liked this doctor!! :)

As the appointment came to an end, Dr. Tolleson started nervously laughing. He stopped and said he was sorry, but he'd had to say what he was about to say so many times within the past two days, that he knew what was coming. That made me a little nervous. Then he said no words no patient ever wants to hear (if they really like and/or trust their doctor). "I'm moving and therefore leaving Vanderbilt and I won't be able to be your doctor anymore." Complete devastation on my part. Complete. I seriously almost burst out crying. But then, then something miraculous happened. He said, "I'm moving to Knoxville." Wait. Did I just hear him correctly?! I turned to Annie and then back to him and asked, "You're moving to Knoxville?! That's where I'm from!" Talk about one extreme to the next. I went from complete devastation to complete elation. I think he'd actually forgotten for a second that I came from Knoxville to see him. He turned to Dr. N. and said that this was the opposite reaction of what most of his patients reactions had been to his announcement over the past couple of days. He said this is a good reaction! I immediately asked where he was going to be. The news just got even better: The University of Tennessee. My first reaction to this was, "My brother works there in the ER!". Then I asked, "Well, can I just follow you?" He said that I was more than welcome. I was also more than welcome to continue at Vanderbilt with a new doctor. This was a no brainer for me: I'm following him. He's moving the last week in April and will start at UT the first week in May. He said he was going to suggest that I see him (or a doctor at Vanderbilt) in 3-4 months. He said that if I did decide to follow him that I might not get to see him until June or around there because he'd probably need a month to get settled. That's fine by me!!

I do have a new plan. I couldn't go any further up in the electricity on Frequency C then I already was, so he added 6 more "notches" that I can go up in electricity on. He said to go up a notch every week. But the difference this time is for two weeks he wants me to seriously document everything. When I'm having a good day, when I'm having a bad day, what I'm doing when I'm having difficulty, what time of day I'm having difficulty, EVERYTHING. I must document everything. Then in two weeks, I'm either to call him or e-mail him. He said he'll gain much more insight this way and he'll be able to tell me if I need to go up, down or stay where I'm at. So that's the plan. He also reprogrammed the level I was at when I walked into his office this morning, in case I need to go back to it. It's Frequency D. But for now, I'm on the "new and approved" Frequency C.

Tonight, I'm thankful. I'm exhausted, but so very, very thankful. Yesterday was not a good day, but JOY came in the morning today and tonight I'm thankful. As I've always said (and yet have had to consistently remind myself) and known and continue to say and know: God's Got This!

Tuesday, January 24, 2017

Tune-In Tuesday: January 24

Hello again!! Thanks for stopping by. ;) It’s Tuesday, which means I'm writing another blog post. Grab a taco (because, remember, it is Tuesday!) and read along if you so desire.

Looking back over the week that's been, I can honestly say that I got where I needed to go and back again and I didn’t fall once. So, I’m doing alright. I’m still at the same level of electricity in my brain as I had last week (3.60 volts on Frequency C). My walking hasn’t been the smoothest or easiest, but hey, I’m still walking, so it’s all good. It's still 1,000 times better then before deep brain stimulation! I’ve had some minor issues with my left hand as well, but again, it’s still useable and for that, I’m thankful!

Exercise. I’ve talked about it before on here. I was introduced to it about 4 or 5 years ago and it’s amazing! However, I’m not going to talk about it in this post except to say that sometimes I feel my most beautiful after a workout. Today I thought I’d take a picture of myself after this morning’s exercise session. When I got in front of the mirror, I realized I wasn’t looking or feeling my most beautiful after all. HA! But, I decided to take the picture anyway, so here’s what you get…

House, M.D. Yep...Dr. House! Everyone comments on my phone case, so I decided he'd be my face today. After all, the face behind the phone was sweaty and didn't have a stitch of makeup on. I don't care what anybody says, I look a thousand times better with makeup on then I do au natural. ;) Today’s workout was a little monumental in that for the very first time in almost a year I wore the teeny tiniest of ponytails. You can’t see it at all in the above picture, but I promise you it’s there. My hair is JUST BARELY long enough to do it.

Speaking of hair, I was in the hair care aisle the other day at the store and a woman looked over at me and said, “You have curly hair, can I ask you something? My daughter has curly hair and I have no idea what shampoo or products to use for it. What do you use?” It was a simple conversation, but it also meant that I have hair again and it’s at a length that people actually cut their hair to and no one knows that I’m still growing it out from having it completely shaved. YAY!!

It's simple things like that, that make me smile. I’ve had several people say they like the length of my hair. I’m still uncertain. Some days, I love it, some days I don’t. I know it’s like that with everyone, but I haven’t decided what length I like the best. I know I need to get it shaped up, but I have a date in mind that I want to get to before even having that done. As of now, it’s long enough for me to twirl in my fingers and for those that know me really well - well, you know that’s my nervous habit. ;) I’m TRYING to break myself of it, but it’s like muscle memory, now that hair is there, I instinctively reach for it. ;)

On an entirely different subject, something little that makes me feel good about myself is taking the stairs. I have not mastered going down them yet, but going up them is a different story. I can actually run up them. I feel normal again when I walk up them. My co-workers tend to be bewildered. I can see why. I still use a cane to walk on flat surfaces, I can’t by any means go down stairs the normal way, but walking up them, I can do – thank you, Lord! So if you hear of any competitions in which all you have to do is run up the stairs, sign me up. ;)

Speaking of running…late yesterday afternoon, I heard a co-worker run to her office and a piece of me was jealous. What is wrong with me?! I’ve never, ever, even-in-the-tiniest way, ever wanted to run, but now I do. Maybe the question should be, “What’s gotten into me?” Seriously, now all of the sudden I want to run? This is crazy talk.

Next Tuesday is my Vanderbilt neurologist appointment. I'm nervous and anxious about it, so I try not to think about it. I know that nothing will happen that God doesn't have His hand on already. I know that. I just have to keep reminding myself that in everything, through everything...GOD’S GOT THIS!

Tuesday, January 17, 2017

Turn-It-Up Tuesday: January 17

This past week was good. My walking was perfectly imperfect - not the best I've walked, but nowhere near the worst either. ;) I am trying very hard to see that even when I have a hard time walking, it shouldn’t affect my whole hour, my whole day or my whole week. I say this like I fell or walking was horrible, but I didn't fall and my walking wasn't horrible. I guess I say it to prove to myself that I am growing in this journey (even if it's baby steps!). Where once a fall or a disastrous walking situation left me down and out for the rest of the day or week, now I’m a little more able to just brush it off and keep going. I haven’t mastered this art completely, so I’m sure there will be times when a fall ruins my whole day, but I’m trying very hard to see the positive in each and every situation. After all, I've been given a gift (deep brain stimulation), so I should act like I've been given a gift!

Today, I turned the electricity up in my deep brain stimulation device. I lasted 2 weeks on the previous setting and decided this week that it was time to turn it up again. I only turned it up by .10. I’m at 3.40 volts on Frequency C.

Well...I should say I WAS at 3.40 volts. For the entire work day, I was at that level, but tonight, out of left field, came this thought: "Turn it ALL the way up." Seriously, this came out of left field. God has a way of doing things like that to me! I had no intentions of turning it all the way up this week. Absolutely NO INTENTIONS. But just like that, I felt God saying, "Just trust me and turn it up all the way." The reason? I realized that I see Dr. Tolleson in Nashville at Vanderbilt in 2 WEEKS on January 31. Seriously - only 2 weeks!! Where did the time go?!!

When I got home from work this evening, I turned the electricity in my device ALL the way up. It only goes up to 3.60 volts, so don’t worry, I didn’t make a HUGE jump. My hope and prayer is that this level will work and that in 2 weeks I will have adjusted enough to it that I’ll be able to walk WITHOUT a cane. I know. Big Stuff. Big Asks. Big Assumptions. Big Dreams. Big Predictions. BIG MIRACLES. My God is KING of BIG. So, who says walking WITHOUT a walker or a cane is impossible?!!

I’m going to try and not get anxious about the appointment. Try being the operative word. ;) I do have a tendency to worry. I know it’s a sin, but it’s one I struggle with daily!! I worry that I’m not doing enough, that this is as good as my walking will ever get, that I’m doing something wrong, that there won’t be any more frequencies left to calibrate or program, that I won’t see the results I want to see, that I'm not where I'm supposed to be in the process. And the list goes on and on and on in my head. And that’s why my life verse is Philippians 4:6:

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”

Yes, fear and anxiety creep into me all the time, but I’ve got a God who is bigger than my biggest fear. In that I take comfort and rest.

Whether God chooses to allow me to walk without a walker or a cane is up to Him. If He chooses to heal me in so that I am able to walk without a walker or a cane, I won't be able to be quiet about it. I'll shout it from every rooftop, in every situation and to everyone I meet. If I still have to walk with the help of a cane or a walker - because I’m human - I might have a pity party for myself for a MOMENT. But then, I’ll pick myself up, dust myself off, stare my situation in the face and declare as loudly as possible: GOD’S GOT THIS!!!

Tuesday, January 10, 2017

Tune-In Tuesday: January 10

This past week has been wonderful. Walking was good. My confidence grew. I didn’t fall. A co-worker told me today that it makes her so happy to see me walking with just a cane and no walker. By no means is my walking perfect, but God gave me an encouraging nudge along the way this past week. I give Him all the glory for progress made and continue to knock down His door with prayers that I’ll soon be able to walk without a cane.

I have a funny example of how I’m NOT used to only using a cane and not having my walker with me. It happened on New Year’s Day at church. We had one combined service that day (instead of our regular three) and we had that service in the sanctuary (instead of the Family Life Center where I go to the contemporary service). Anyway, when I do go to services in the sanctuary it has been my routine to store my walker against the wall in the little alcove to the left of where I usually sit. To get my walker to this alcove, I usually walk down the center aisle and then in front of all the pews and circle back to it. So…New Year’s Day – without even thinking about it – I walked down the center aisle and in front of all the pews on my way to the wall in the alcove when, about halfway there, I realized what I was doing. I was actually kind of embarrassed, but I had to laugh at the same time. That incident was actually the second time I’ve done that. Today, when I got out of my car, I automatically unlocked all the doors. It’s been my habit for the past 5 years (since having this car) to do this, as I've always had to get the walker out of the backseat and my car doors automatically lock (just FYI…this is the one feature of the Honda Fit I can’t stand! There is a way to disable this function, I just haven’t done it yet.). Today, when I mindlessly unlocked everything, I laughed and reminded myself that I don’t have to do that anymore.

I’m happy to report that I only tripped once while taking down all the Christmas d├ęcor in my house. It took me 9 hours to get everything taken down and stored away. When I tripped, I was sure I was going to fall as it was one of those wobbly trips where I couldn’t quite get my balance. But then, all of the sudden, I found myself not wobbly anymore and I avoided a fall. Thank you, Jesus! After working all day in the house, I worked-out on my stationary bike. Admittedly, I thought I was kind of silly for doing so because I definitely got a work-out putting decorations away, but I did the work-out any way. It was my best work-out in a long time. The next day (Sunday), I was walking even better (save for an assist by someone at church helping me up on the sidewalk. That was partly due to the fact that I really needed a railing to hold on to and partly because I think I psyched myself out because there was snow all around and I was afraid of falling on ice.) than I had been walking. Come to think of it, I always feel much steadier on my feet after a work-out.

I do have what I call spurts of good walking. My walking is definitely NOT perfect, but I have a good and gracious God who allows me little glimpses of “perfect” (in my eyes!) walking and it gives me hope that someday soon, I’ll be able to ditch the cane like I ditched the walker.

On another note, it’s super nice to have a doctor in the family now!! I’m sure it’s not quite so nice for Stanton, but he humors the family and answers medical questions we ask him. I’ve asked him a few things. This past Sunday though, I told him that I had this callous on the bottom of my foot and it was really hurting. His response was that callouses don’t hurt. I’ve had this particular one for months now, if not even a year. I had told a co-worker about it and she said it might be a planter’s wart. I even think I’ve talked about this on the blog before. Anyway, all of the sudden this callous or wart or whatever it is has been hurting really bad. So much so, that it’s caused me to walk on my foot in a different way. So Sunday, I was telling my brother Stanton about it. He was adamant that it couldn’t be a callous because callouses don’t hurt. So my mom suggested he just look at it for me and he did. And guess what?! It IS a callous, but with a blood blister underneath it. ;) The blood blister is what’s causing the pain. Yay – Stanton saved me some money, I don’t have to make a special trip to the doctor about it and now I don’t have to worry about having anything that could spread. Thank you, Stanton! I also showed him a cut on my toe. It’s been there for a month or more now and will not heal. It won’t heal because it’s rubbing against my shoe. I’ve tried putting Band-Aides on it and they just fall off. I had some old “new skin” glue that I was going to use on it as well, but Stanton said that would come off too. He recommended that I get Moleskin bandages. I had never heard of them before and haven’t gotten them yet (because I haven’t been to a store that sells them), but I am definitely going to get them. He said it’s the best to use on stuff like this. Now, back to the part where I said the pain (from the blood blister) is causing me to walk on my foot differently - the callous is in the vicinity below my pinky toe on my left foot. I’ve been walking on the “outside” of my foot which is why it's calloused and now has a blood blister. But since it hurts to walk that way now, I’ve been walking more on the inside of my foot and what I’ve noticed is that when I do that my foot and toes lay perfectly flat on the floor. AMAZING!!! So maybe this callous/blood blister is a blessing in disguise. Maybe….

All of this to say, I didn’t turn the electricity in my deep brain stimulation device up today. I really, really wanted to, but something (or someone – as in God) told me not to today. I should wait. Wait patiently – which I don’t do well at all. Wait another week. Stay on the level I'm at (3.30 volts on Frequency C) at least one more week. Dr. Tolleson (at my last appointment) told me to wait up to 2 weeks to see any results and Dr. LeForce reinforced (haha- see what I did there?!) that fact – it could take up to 2 weeks (or more) to see certain results at certain levels. So, I’m waiting. Impatiently, I’m sure at times, but I am waiting and will continue to wait. After all – God’s Got This!!

Tuesday, January 3, 2017

Turn-It-Up Tuesday: January 3, 2017

Happy New Year! 2017 is here!!

Today started at 3:30 am for me. This was NOT on purpose. I think I was up that early because I was anxious/fearful/nervous about a neurology appointment I had at 11 am. I didn’t think I was that nervous, but what other reason could I have been WIDE AWAKE at that hour for?! I thought long and hard about getting out of bed and starting this post, but eventually, I thought my way out of doing that. Haha. ;) I tried to go back to sleep, but sleep didn’t come. I listened to the rain. I got on Facebook for a little bit. I prayed. I prayed for others. I prayed for myself and by 4:55 am, I decided to get up. I exercised. I got a shower. I worked on my fine motor skills by untangling a necklace I wanted to wear and then I went to work.

I got to work at 7:30 am – an hour before I needed to, but it ended up being great. I got lots of stuff done, plus I made up the time I’d miss when I went to see the neurologist.

I posted a Bible verse on Facebook last night: “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 I posted it mainly for my sake. I needed it on repeat in my head.

For a couple of days now I’ve been really battling thoughts that I’m not good enough, pretty enough, loveable enough, worthy enough. I’m just not enough. I love the Lord. I do, but I also struggle with fear and doubt and anxiety. It’s not something I'm proud of or that I love to talk about, but I have my own demons. It’s in these moments of self-doubt though that God meets me. I need not be afraid. I’ve said all along that God’s Got This and He does…I just need to be reminded of it every once in a while.

All logic said I should not have been anxious about seeing Dr. LeForce. I wasn’t having brain surgery today. I’m not scared of him (and just to remind you, he’s my Knoxville (local) neurologist). However, I was scared that I wasn’t going to be “good enough”. I was scared that he was going to tell me that I should be walking better, that I should have made more progress. I SO wanted to walk in there with NO walker (which I did) and NO cane (which I didn’t). It’s been 9 months (on Dec 29) since I’ve had the device activated. Should I be pushing myself more? Am I on the right level of electricity? Am I holding myself back somehow? Am I where I’m supposed to be? My perfectionistic frame of mind screamed that I wanted to be able to show him COMPLETE success. But as I prayed last night, “Not my will, but yours be done, Lord.” And so, it was. I had to use my cane. Not my will, but His be done. But guess what? I didn’t have to use the walker. I didn’t fall. I didn’t trip. I didn’t slip. God had me in the palm of his hand and NONE of my fears came to fruition. Not a single one of them.

My appointment with Dr. LeForce turned out to be quite lovely. He put me right at ease. He again reminded me that this journey is a process and I don’t have Parkinson’s or a tremor in which deep brain stimulation works immediately. Dystonia and electricity take time. It’s gradual. But my brain says, "it's been 9 months!!!" My appointment turned into more of a therapy session for me. ;) Dr. LeForce let me talk and for once, I actually did talk and talk and talk. I can talk, but for whatever reason, I tend to clam up in front of doctors. But not today. Today, I talked. Dr. LeForce was probably glad when I left! I told him EVERYTHING. My doubts, my fears, even that sometimes my head feels heavy (like the feeling you get if you’re wearing a headband or a hat and then you take it off…it still feels like it’s there for a few minutes) and I have to remind myself that there is extra equipment in there now. ;) I told him how often I’ve been turning up the electricity in the device and that sometimes I feel somewhat lost in the sense that I don’t know if I’m doing things correctly, even though I have all the information. I told him that I doubt myself. I told him of my fears of walking in front of other people (to which he said, I just have to do it…practice, practice, practice). I told him of my fears that I’ll get to the highest level of electricity and still not be able to walk without a cane. He let me get it all out. ;) And then, ever so gently, he reminded me that I walked into his office walker-free. To which, all my fears and anxieties and doubts melted away. I’m making progress. Slowly but surely, I’m making progress.

I thanked him over and over and over again for suggesting deep brain stimulation to me and for championing it when I decided I wanted to do it and for referring me to Vanderbilt. I told him that for all my fears/worries/anxieties, I am STILL so very, very, very thankful that I had the surgery. I’d do it again in a heartbeat. I am exceedingly happy with my progress (even though I want more). I told him about this blog and that it helps me to remember from where I came from. I’ll admit wholeheartedly that I’m a perfectionist who sees things black and white. I want instant results and have absolutely no patience. And even with all of that going against me, God is still merciful. He is still good. I can HONESTLY say that if this is as good as it gets, if I don't improve any more, I'm OK. However, that doesn't mean, I'm going to quit asking to be healed and to be able to walk both walker AND cane free. ;)

As for turning the electricity up in my device – I couldn’t wait until today. Last Friday, I turned it up to 3.20 volts. I thought that I was going to leave it alone today, but at the last second, I turned it up to 3.30 volts. I told Dr. LeForce all of this and he once again reminded me that I wasn’t going to see immediate results. It could take a week or two or longer. So, I wait. Again. I’m OK/not OK with this. ;) I want immediate results and yet I have to admit that it's in the waiting where I’m growing. My faith in God grows in the in-between times. So, I’m once again conflicted – do I want to be healed immediately? You betcha! But would I trade instant healing for all the things I’m learning in the “in-between” times? Not for a second! So with that, I’ll close with “Not my will but yours be done, Lord, for I know You’ve Got This!"