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.

MRI Results

Today I got some surprising news that rattled me a little bit, but I thought I might as well go ahead and blog about it, since blogging seems therapeutic for me.

Before I get into it, I have to say – Thank you, Jesus for answering my prayers about not having to wait to learn more about what’s going on: Dr. L.’s office called with the results of my MRI.

The results were, I'll admit, a bit shocking. I assumed (that’s my first problem – NEVER, EVER assume!) that all would be the same as it was in 2009 when I had my last MRI. Not quite. This MRI showed I have a cyst near the shunt. It’s just a cyst – not a tumor or cancer, they assured me, but still it’s unnerving.

The woman I spoke with said that she debated calling me with the results because she had yet to speak with Dr. L. about them. But she decided to call me anyway because if I had questions, she could ask Dr. L. for me. She’s going to get with Dr. L. and see what he has to say, ask him my questions and then call me back. The good news is she is also faxing my referral for deep brain stimulation to Vanderbilt today. She didn’t know if the cyst would prevent me from having the DBS surgery (again, something Dr. L. would have to speak to).

Another surprising result of the MRI was the fact that in 2009 the radiologist reported right side meningeal thickening and on the MRI done Monday there was absolutely no trace of that. I’m not really even sure what right side meningeal thickening means, but the fact that it was there in 2009 and is not there now is interesting.

A co-worker asked if I would have rather not gotten a call today about the MRI then gotten incomplete information. I can say, that I am very thankful for the call! I have been praying that I would know something soon (although I wanted to know about the referral to Vanderbilt, not a cyst on my brain!). Just this morning I was praying that I would hear something today and I did. I am so, so thankful. God answers prayer!

So now, I wait to hear back from Dr. L’s office and his take on this new (or maybe not so new) information. I will not worry until there's something legitimate to worry about. At least that's what I'll tell myself! And as I wait, I'll meditate on my life verse:

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. (Philippians 4:6 NIV)

MRI

Today I had an MRI of my brain done. It's not my first and it probably won't be my last. It went great (from my perspective anyway, I actually have no idea what the MRI says). After ten years and several MRIs, I guess I'm getting the hang of them.

Comparing the MRI I had done today to the very first one I had done - well, the comparison is like night and day.

First MRI: I opted to take medication to calm me down, which made me extremely groggy, but able to get through it without freaking out. I didn't know whether I was claustrophobic or not, but I did/do know that I have panic attacks, so I did NOT want to have one while getting the test done. My dad drove me home, and everything he said to me was the funniest thing I'd ever heard. I was so out of it, I couldn't figure out how to put my watch back on (which thoroughly entertained the nurse) or unlock my front door (which made Dad have to get out of the car and help me). I thought I could go back to work after having it done - ha! No way. I went straight home and fell asleep. I slept the entire afternoon away and straight through the night, only waking up in time to go to work the next day.

Today's MRI: I drove myself to get it done, and didn't take any medication to calm me down. I didn't freak out or have any panic attacks. I actually almost fell asleep! How does that happen?! The only thing keeping me from doing so was the thought that if I did fall asleep and accidentally moved, they would have to do the test all over again, so I stayed awake. I also drove myself back to work and worked a full day.

From someone who once had to have medication to get the test done, to almost falling asleep during it, I guess you can see that I've gotten pretty darn used to MRIs! For those that have never had an MRI (especially of the brain), it's an experience. They put this mask thing over your head and then send you in this tube thing (I know, my medical terminology is stellar!). Thankfully though, there's a mirror that you can look in and see the outside world, so it makes it 1,000 times less claustrophobic. It's super loud too - so much so that they give you ear plugs. It's a bunch of clicking and whirring noises. The MRI I had done today had to be done with and without contrast, which means halfway through the MRI Tech comes in and gives me an IV of contrast dye. Today's MRI only lasted about 35-40 minutes.

Now, I just wait. This is the part I HATE the most. I have to wait for the radiologist to read the MRI and then I have to wait for him/her to send the report to Dr. L. Then I have to wait for Dr. L. to make the referral to Vanderbilt for the deep brain stimulation. After that, I have to wait to see if Vanderbilt thinks I'm a good candidate. Then if they do, I have to wait for them to call me. Did I mention that I HATE waiting? But as a co-worker said today, God's in control and nothing will happen until the exact time it's supposed to happen. If you pray for me, please don't pray for patience. Because if you pray for patience, God might answer by making me wait more. :) Just pray that everything will be done in His time, and until then, I'll wait.

Keeping Hope Alive

I am so thankful for Jesus and for His renewing of my spirit. Just when life seems to get tough, he throws me a rope and keeps hope alive!

This morning was my appointment with my new neurologist, Dr. L. To say I was a little nervous, is probably understating how nervous I really was by like 1,000 times. Don’t ask me why, I just was. I was so thankful that Mom offered to go along with me. She’s been my ever-faithful companion to neurology appointments.

One thing I wasn’t expecting – Dr. L. met me at the door and walked me back to the exam room. Mom later said that she thought he was a nurse at first because she’s never seen a doctor actually meet a patient at the door. But it saves time, if you think about it. In one fell swoop, he could watch me walk and get my history without me having to repeat what I would have just told the nurse. Efficiency, oh how I love you! :) But don't get me wrong, nurses are wonderful and needed! It's just that in this instance, I was super impressed that he came and got me and walked me back.
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I gave Dr. L. my history and he looked at my MRI (which was taken back in 2009). It’s always good to have Mom there because she fills in things that I forget to mention, she can answer questions I have no idea about (like those about my birth, when I started walking and when I was a child) or she corroborates my accounts of things. I felt like I was being rude by talking the whole time, but I guess he did need to know everything! Once he was caught up on everything, Dr. L. performed the routine neurological tests that every neurologist does. I should know the names of these by now, but I don’t! Most have to do with reflexes and coordination. Then we started talking about what could be done going forward. He went over the medications I’m taking now, those I’ve taken in the past and what I've had done in the past (physical therapy, BOTOX injections, shunt surgery…). He said there were a few options: we could add different medications, do physical therapy with a therapist that works only with neurological patients (why hadn’t I thought of that before?!), or try deep brain stimulation. He asked if any of my other doctors had ever mentioned deep brain stimulation (DBS) to me and I told him no. But my ears perked up, because it wasn’t the first time I’d heard of DBS.

Deep Brain Stimulation: It both scares the living daylights out of me and intrigues me all in the same thought. I had first heard of it years ago. When I first started having neurological symptoms, I self-diagnosed myself with every weird, fatal, never-heard-of-before and rare neurological disease I came across (maybe I shouldn’t spend so much time watching medical shows!). And because of this, I also researched and read about every possible treatment known to man. So, I had heard of DBS. I had even done some research on it, but after the shunt surgeries both failed, I decided to wait on bringing it up to any doctor because back then (6 years ago), it was just in its infancy of being a treatment for dystonia. I'm not going to lie, I decided to let others go before me before I tried it! None of my doctors ever brought it up as a treatment either, so I didn’t press the issue. I think I may have mentioned it once to one of them, but nothing came of it. But then there was today: six years down the line and a new doctor. Dr. L did mention it as a treatment. I asked him more about it. He said that it has been found to help dystonia patients significantly. He also said that the results of DBS on dystonia patients are a little different then they are on Parkinson's tremor patients. With a Parkinson’s tremor, the tremor instantly goes away when the surgery is performed. With dystonia he said it takes a few weeks/months after the surgery to see the benefits. I asked him if I’d be awake during the surgery (as I had seen in videos of DBS and on TV) and his answer was yes. This is because the doctors would have to ask me questions and make sure the probes were in the right places. Kind of cool, but also kind of scary.

I told Dr. L. I was up for anything – medication, physical therapy, surgery – whatever. I’m ready to take on this battle again and not just settle for having to walk with a walker my entire life. I needed a little break, I think, after the failed shunt surgeries, but now, I’m full steam ahead ready to fight again. Don’t get me wrong. The past 6 years have NOT been a waste. They’ve been a huge growing field for me. I loved my previous neurologist and miss him greatly. He was very insightful and I thank him for everything he did for me. The truth is, it wasn’t until this past year that I fully accepted dystonia as a diagnosis, that there was something wrong with me and the fact that I might never get any better than I am today. But I think I had to accept that as fact to be able to move on and have the energy to fight again.

What Dr. L. did for me today was give me hope. Hope that I can walk again without assistance. Hope of new procedures and surgeries. Hope of new discoveries and innovations. Hope. I had absolutely no expectations for today’s appointment and I was just blown away by the outcome of it (in a good way!) and the hope I was given.

So the plan for now is to add another medication to my routine. If the medication works, great. I’d stop there. If it doesn’t help, then I may also try more physical therapy. I also have an MRI set up for next Monday morning. The MRI is for the “in the meantime”. Meaning that, Dr. L. is referring me to Vanderbilt for the DBS and Vanderbilt needs a new(er) MRI for the referral. If the medication and the physical therapy don’t work and I do decide to go forward with the deep brain stimulation, the ball would already be rolling on that. Then I wait to hear from Vanderbilt and we go from there. I feel truly blessed to have met and gotten in with Dr. L. I see him again in December. I also have to thank my friend, Dave for giving me his name and saying that I should go see him. To go from thinking “this will be the rest of my life” to hope…it’s a beautiful thing and I'm truly excited about what the future holds.

What's Up Wednesday

Hi everybody! You know it's been awhile since you last wrote a blog post when you 1) can't remember the URL to your blog and 2) you can't remember the username and password. It really hasn't been that long, but I did encounter these two situations. I'm sorry I've been absent for awhile, but I promise I'll be posting more in the coming days as there are more things to post about!

As for today...I just read a friend's blog and she posted something kind of fun, so I thought I'd do the same. It's called "What's Up Wednesday" and here it goes...

What I'm Eating this Week...
I'm kind of boring. I'm one of those people who eats the same thing every day. I won't bore you with it, but I do eat breakfast, lunch and dinner along with three snacks. One thing I've been turned on to though (within the past several months) is Almond/Coconut milk. I'm the type of person that only likes milk in cereal or with something chocolate. Someone suggested I try almond/coconut milk and I have fallen in love with it! I put it on my cereal too. It's awesome!

What I'm Reminiscing About...
I was reminiscing with someone the other day about this time I ran over a snake with my bike when I was little and it's traumatized me ever since. Not because I might have hurt/killed the snake but because I HATE snakes and it scared me to death. Even the sight of a picture of a snake scares me! I told her that for dinner that night my mom made chicken tetrazzini and used spaghetti noodles and those noodles kept reminding me of the snake I had just run over.

What I'm Loving...
Sunrises
clean houses
baby giggles and smiles and getting my sweet niece, Genevieve, to walk!
family
TV watching

What I've Been Up To...
Work - I love my job!! I am so blessed to be doing what I love and loving what I'm doing. I always thought I'd get married and be a stay-at-home mom, but so far life hasn't taken me down that path. Instead, I've fallen in love with what I do for a living and I couldn't be happier!

What I'm Dreaming...
I day dream all the time. I'll let you in on a little secret. I like to dream about acting in a TV show. I take shows that are already on TV and make up a character for myself and day dream about acting. I know, I'm super weird! I also dream of figure skating. I've mentioned this before, but I make up skating routines in my head. If I'm listening to a song, I make up the skating moves to it. What's weird about this is, I can't even STAND on ice, much less skate! I guess that's why they call it dreaming.

What I'm Working on...
Being a more patient, kind and compassionate person. Holding my tongue and not getting into any disagreements or fights with anyone.

What I'm Excited About...
Garth Brooks concert!!!!!!!!!!!!!!!!!! If you know me, you know how excited I am about this concert!

What I'm Watching/Reading...
My current favorite TV shows are: Chicago Fire and The Night Shift. I sadly got rid of cable (it was just too darn expensive). I really, really, really LOVE TV, so it did pain me to get rid of it, but I'm doing surprisingly OK with it. I'll see about my return to cable in the future but for now, I'm OK with broadcast only.

What I'm Listening to...
Did you read what I'm excited about? GARTH BROOKS music of course (to get ready for the concert!). Also, I'm really into Eric Church.

What I'm Wearing...
Dresses, dresses and more dresses. I LOVE dresses in the spring/summer (or just about any other time too!)

What I'm Doing this Weekend...
Hanging out with my niece, Genevieve!!!

What I'm looking Forward to Next Month...
My neurology appointment with the new neurologist
My brother, Steven's graduation from Graduate School
My brother Steven's birthday
The Garth Brooks concert

What Else is New...
You'll just have to stay tuned to find out!

I hope you got some enjoyment out of reading this. At least you know a little more about me :)

An appointment

As you know, I’ve been trying to get in to see a new neurologist. Thank you again to everyone that recommended someone. I researched the names given to me and decided on one and then began the process of becoming a patient.

On a side note - I’m convinced that we’re called “patients” because we have to have patience in getting a doctor, getting a diagnosis, getting better. It’s an art, not a science, right?! ;)

But I did my part - getting a referral and getting my records sent and then I waited.

Last night, I prayed specifically that either the neurologist’s office or my internist’s office (the one who gave the referral) would call me today to let me know if I was accepted as a patient and could get an appointment. I know, it may seem frivolous to some to pray specifically about that, but I didn’t know what I was supposed to do next. Was I supposed to call them back and get an appointment or were they going to call me? Did they have everything they needed? Did this neurologist even want to take me on as a patient? I tend to worry about frivolous stuff like this, so last night I just took it God and decided He could worry about it for me.

This morning I was at work when my desk phone rang. It was my internist’s office calling to say that I have an appointment scheduled for May 11 with the new neurologist. You can’t tell me that God doesn’t answer prayers, no matter how frivolous they may seem to outsiders! What’s important to us, is important to God.

So now I wait until May 11. Until then, I'll be praying that this new neurologist will be the right fit and that everything will go well.

Blessed!

Ten years ago today I was blessed to have been able to buy a house. I was 24 and had just finished paying off $20,000 worth of student loans in December 2004. Mom and Dad had graciously said that I could live with them as long as I was paying off the loans. But when the loans were paid off, I knew the next step was to move out! The house that I am now celebrating 10 years in has been a blessing in disguise. I have a ranch house, meaning no stairs. Who would have thought that would have come in to such big play just a few months later when I started having major walking issues?! God knew! Also, when I bought the house and had a house warming party for it someone mentioned that the halls in the house seemed extra wide, like they were handicap accessible. Again, who knew that this would come into such huge play, when now 10 years later I use a walker to get around?! God knew!

Ten years later and I cannot believe that I have owned my own home for that long. When I “planned” my life (what’s that famous Woody Allen quote? “If you want to make God laugh, tell him about your plans”.), I never thought owning a home would be such a big deal. My plans were to get married right out of college and have 5 kids before I turned 30 and to be a stay-at-home mom. What I didn’t plan was to be single, pay off my student loans in two years, start having major walking issues, spend my 20’s going to doctors trying to figure out the walking issues, paying off my first car in a year, landing my dream job or buying a home. But now it is 10 years later and my initial plans have been completely, utterly turned on their head. I did not get married right out of college...it's 13 years later and I'm still not married. I didn't have 5 kids before I turned 30 - I don't even have one. And because I don't have kids, I’m not a stay-at-home mom. What I do have ten years later is a house I now call home, which I’ve managed to keep from crumbling to the ground, I had a 9 year period where I didn't have to make a car payment and now I have a “new” car (bought in 2011) that I’m paying off which is perfect for hauling my walker around in, a diagnosis of dystonia so I’m no longer going from doctor to doctor trying to figure out a mystery illness, and my dream job of working in the media (and actually working in the field I went to college for!) I say all-in-all I’m pretty darn pleased with how the Lord took everything I once thought I wanted and needed and completely turned it on its face! In my wildest dreams, I never would have thought my life would be like it is now. I’m thankful and blessed with all I have.

On the dystonia front – again, I must emphasize how blessed I am. I’ve been worrying about medication. I was completely out of refills when I got the letter from my neurologist saying that he was moving out of state. I called him and left a message with his nurse and did get a refill. However, when I went to pick it up, I noticed that it was only for a week’s worth of medicine. That’s when I started to panic. I’m in the process of getting a new neurologist, but even if I got one today, I probably wouldn’t get in to see him/her until months from now. So, I called my family doctor, explained my situation to the lady who answered the phone and my family doctor prescribed the medication I needed. Thank you, Lord that I have enough medication to get me through until I (hopefully!) get in to see a new neurologist. It’s one less thing I have to worry about (and worry really does affect the way I walk, interestingly enough!) Again – I am blessed to have an Internist who knows me and knows that I need the medication and is not afraid to step in and prescribe while I’m transitioning doctors.

I’ll end this post by saying, thank you. Thank you so much for reading. I am SO encouraged by all of the comments you leave. I’m always scared no one’s going to read these blog posts and then am humbled when you do. So, thank you, thank you for reading. Once again, I am blessed, blessed, blessed!