Saturday, June 20, 2015

10 Days

In 10 days I have my initial DBS (deep brain stimulation) appointment at Vanderbilt. Last night I got a packet of information from Vanderbilt on what to expect (along with paperwork to fill out and directions to the clinic).

I spent my Friday night curled up on the couch, first reading my newest edition of People and then reading through all the information. :)

To satisfy the media nerd in me, there was even a DVD, which of course I watched.

I've been excited as well as nervous about this upcoming appointment. I guess you could say it's actually a nervous excitement - yes, that's what it is. I always get nervous before I see a new doctor. But I'm excited too. I so want to be able to walk without a walker or a cane again. Maybe this is the answer, but then again, maybe not. I just have to wait (which I'm not very good at!) and see what the doctors say.

Speaking of doctors, I "met" my Vanderbilt DBS neurologist through a biography page that was sent in the packet. I'm pretty sure we're the same age. He graduated college the same year I did and then went on to medical school. I guess I'm getting to that age where doctors can be my age - haha!! My younger (by 7 years!) brother is a doctor, so YES, I'm at that age ;)

I completely understand that I may not "get" to have DBS. (I put "get" in quotes because, if I have it, it's not going to be a picnic in the park and it won't cure me. It is, after all, brain surgery and there are risks associated with it.) I do want to be able to walk without a walker, but God may have other plans for me and DBS may not be His plan. Even if I have the surgery, it may cause other problems, or not help me in any way (I've been through that before with the shunt.) So, if I hear "you're not a candidate", I'll take it as a sign from God that DBS is not for me. I have to say that in many ways I have been blessed because of the walker and the dystonia. There are people I have met and things I've gotten to do and I have dystonia to thank for that. But, to be able to walk assistance-free: I can only imagine! If you can walk like that now, please don't take it for granted!!! I can honestly say, I probably did. And now walking assistance-free is something I dream about.

I am resolving in the next 10 days to NOT worry or be anxious about anything (which I am very prone to do!), but in prayer and petition, with thanksgiving, I will present my requests to God. (Philippians 4:6) I'll let God determine the path my feet shall take and I'll rest in the knowledge that He knows what's best.

Friday, June 5, 2015

A Deep Brain Stimulation Appointment

I have a deep brain stimulation appointment at Vanderbilt set for June 30 at 10am. I got a call from Patricia at the Vanderbilt DBS clinic. She's my coordinator now. She said she'll be with me every step of the way and I can call her if I have any questions. She explained what was going to happen. June 30 is just a consultation with a neurologist. She said I'll get to know him and he'll get to know me. He'll evaluate my symptoms and he'll be the one to see if I'm eligible to go forward with DBS. IF (and that's a big if right now) he thinks I meet the criteria to have DBS, I'll have what they call a pre-op evaluation. Patricia said that this consists of two appointments that can normally be done in one day. One is a motor skills evaluation and the other is a neuro-psychological evaluation. IF (another big if!) those appointments pan out and the doctors doing the evaluations think that I'm a candidate for DBS, the next step is for my neurologist to bring my case before the rest of the neurologists in the clinic. They meet every month on the 1st to discuss their patients and see who actually qualifies for the surgery. If they all agree that I am the "perfect" candidate for the surgery, then the surgery date is set.

Back to Patricia for a minute. At the end of our call, she said, "I see you have a birthday next Friday - happy birthday!" She mentioned that her birthday was on June 8 and that we are the same age. I wished her a happy birthday too. I found it funny though because she said that technically she's a few days older than me. I said I didn't mind because I'm the oldest in my family. She said she was the baby in her family. So we got to swap roles for a minute. :) She seems really sweet and I'll get to meet her on June 30.

I have to say that I am SO HAPPY that I made it through the first hoop - getting an appointment at the clinic. But, it's going to be a long ride. I'm kind of nervous about the whole thing, because I have a feeling it's going to be like I'm in school again. I have to "pass the test" every time and I'm a horrible test taker. But, one step at a time...if I get through the initial consultation and the neurologist feels like I'm a good candidate, then I'll worry about the next step. Who know? I might not make it through the consultation. He may say I don't qualify. So there is no need to worry about something that may not even happen.

I'm excited about the future and what it may hold. I'm trying to be realistic though and not get my hopes up too high. I do know who holds my future in His hands, so I'll rest in that. Whatever may come, I know the Lord will fight for me. He always has my best interests in mind.

Tuesday, June 2, 2015

Weekend Fun

I had such a wonderful weekend this past weekend, that’s it’s taken me until Tuesday to blog about it!

It all started on Friday with a call from Dr. L’s office. I’ve been approved for a consultation on deep brain stimulation at Vanderbilt! I am so excited about this potential treatment, but at the same time I don’t want to get my hopes up too high. I might not even be a candidate for it, but at least I’ll get an appointment to see if I am. Dr. L’s office said that Vanderbilt should call me within a few days to set up an appointment.

Saturday was the Garth Brooks concert. It was awesome, epic and so much fun!!!! It was everything I thought it would be. Mom and I had special shirts made by friends of ours and we felt like rock stars. Seriously! Every person we walked by was super impressed by the shirts and wanted to know where we got them. Here’s a picture of us:
I went over to Mom and Dad’s house before the concert and my niece was there. She’s 11 months old today and she was mesmerized by the lights on our shirts. She kept looking at them and touching them. It was so cute to see her reaction to them. Mom and I were going to go to a Retropolitan craft show and out to eat before the concert. Halfway to our destination, I realized I forgot my handicap car tag (Mom was driving us in her car). So we had to circle back and grab that. By the time we got back downtown it was about 4:30pm. The concert started at 7:30pm and the doors opened at 6pm. We went to the craft fair and then to Sweet P’s (a BBQ joint). It was a great place to eat. We got one plate and split it. We had the brisket (I’d never had brisket before) and I went all in and got the macaroni and cheese. This was NOT a calorie free or friendly meal, but it was so good!
After dinner we headed on down to the concert. Parking proved to be difficult. I had bought a premium parking ticket ahead of time, but finding where “Staff Lot 5” was proved to be our challenge. It would have been easy to get to if streets weren’t closed and people weren’t giving us the “wrong” directions (telling us roads to go down that were blocked off). I think it took us around 10-20 minutes to find where we were supposed to park, but once we did – we had an AWESOME parking spot. It was in between the arena and the parking garage. We found out that there were only 15 parking spots in that area. It was right across the street from the door to the arena! It was well worth the money (in my opinion). We got inside the arena and everyone we passed pointed out and commented on our t-shirts! Mom bought me an official Garth Brooks tour T-shirt and we went to our seats, only to find a few minutes later that we were in the wrong section. We moved over one section and I think we had better seats there anyway! We were an hour early – not sure how that happened! We took selfies and pictures of the stage and people watched until the concert started.
I was so excited, I could hardly stand it!! We saw a couple from church a few rows down from us and talked with them for a while. Then the concert started. It was awesome!!! Garth did not disappoint. That guy has so much energy and enthusiasm and heart. It was an epic concert!!!! I had a blast.
When it was all over and done with, I asked Mom if we could wait a few minutes and let the crowd die down some before we left the arena. We sat back in our seats and were again complimented over and over and over on our t-shirts by those filing out of the arena. When we finally got up to leave we walked out and in the hallways of the arena, people still stopped and commented on our shirts. These two girls were in line to meet one of Garth’s back-up singers and they pointed at us and said “we were sitting on the opposite side of the arena from you and we saw your T-shirts!! We were wondering if we’d get to see them up close. We LOVE them!!” I was SO happy to hear that they saw them across the arena. Mission Accomplished!!!!!!!!!! I SO hope Garth saw them from the stage. It was an awesome-I’ll remember it forever- night!! I am so blessed to have spent it with my mom. She obliged me and wore her t-shirt with pride, even though I know she doesn’t like to wear t-shirts. She humored me and wore it anyway. She also bought me shorts to wear with it. They were as epic as the shirts because they were metallic silver and I’m pretty sure I was solar powering the sun while wearing them. I thought, I’m already wearing the shirt, so I must go ALL THE WAY and wear the shorts too. It was a “go big or go home moment”! The Garth Brooks concert was an early birthday gift from Mom and Dad and I had the absolute BEST time. I’ll always remember it and cherish it.

Sunday, the fun continued. After church (which was great!), Dad and I headed out to a Smokies baseball game with members from our church. It was our church’s “event of the month”. The only problem: rain! It poured (and by poured, I mean it was a deluge!!) in Knoxville. We had to go to Sevierville for the game and by the time we got there it was still raining, but not as hard. The game was rain delayed for an hour, but then it was under way. I loved spending time with Dad and others from church. I’m not a huge sports fan (what’s weird is that I LOVE sports movies, but can’t really stand to watch actual sports except figure skating (and YES that is a sport), and the occasional UT football/basketball game), but it was really fun. I liked my “Dad and Stephanie” time the best though. I told him all about the Garth concert and we had a great time talking in the car on the way to and from the game (it’s about a 45 minute drive one way). We ended up leaving a little before the game ended because it looked like a massive storm was coming and our team was losing. It did storm and our team did lose, but I still had a great time and was so glad I got to go.

I was reminded once again that God gives us all good things, even when we don’t deserve them. I had a wonderful, memory-making weekend and it’s not lost on me how blessed I am.