Saturday, September 28, 2013


I can't believe I haven't updated this blog since Tuesday...there is so much to write about and it all comes down to one word: blessed! I am SO blessed. From little things to big things, I am one incredibly blessed girl. So let's get right on it....

First, since I love, love TV, let's start there. I loved the season premiere of "Chicago Fire" on Tuesday. On Wednesday, I watched reruns of "Duck Dynasty". I can't wait for new episodes of that show this week, but I loved the reruns as well. Thursday was the much anticpated premiere of "The Michael J. Fox Show"!! I was so excited about it. I love Michael J. Fox. I loved him in "Family Ties". My favorite movie of his is "Doc Hollywood". (I know, you are now all saying, "That's her favorite?! What about "Back to the Future"? But...I'm sticking with "Doc Hollywood"!!) I love that movie and him in it :) Anyway, I was super excited to watch his new show, however, I had an already planned "date" with my grandmother to watch "Doc Martin" at the same time it premiered. So, I just recorded it - or so I thought! When I got home, I realized, I had done something wrong and the show had NOT recorded!! I was so sad. Until, I realized it was going to be shown again on Friday night. Then sadness turned to happiness :) On a side note - I love my Thursday night "date" nights with Oma watching "Doc Martin". We just found the show this year. I know it's been on for awhile (PBS, 9pm on Thursdays), but it's brand new to me. Oma found it first and started watching it and then she told me about it and I started watching it. Then I started going over to her house to watch it and now we have a weekly "date" night. It's fun! Now, back to "The Michael J. Fox Show" - I ended up watching it on Friday night and I loved it. Yes, it's really different from "Family Ties". Yes, he's "shakey" because of his Parkinson's, but what I got out of it is: follow your dreams. Don't let something like Parkinson's or dystonia or anything else keep you from doing what you want to do. If it's acting - then act! I am so glad he's back on TV. I know, I may be seeing his return to TV in a different light then everyone else. I hope I'm not though. I don't see him as this guy we have to have pity on because of his circumtances. I like him because I like him. It's not because he does or does not have Parkinson's. I am so happy he's back, Parkinson's and all. It gives me hope and makes me realize, we are the only ones that put boxes around ourselves and say we can or can't do something. Fear overtakes us and keeps us from fulfilling our dreams. I know, heavy stuff, right?! And you're thinking, "she got this all from watching "The Michael J. Fox Show"?" And to that I say simply: yes!

Speaking of boxes we put around ourselves, a topic came up between myself and co-workers this week and it got me thinking about how I put God in a box. My God - Jesus - is the biggest thing out there. He created the world, you and me!! So why on earth do we put limitations on what we think He can do?! The topic of conversation between me and my coworkers was what I wanted in a husband. Yes, it really was! I'm not quite sure how we got on this topic, but nevertheless, we did! It was silly and crazy, but it also got me thinking. One co-worker asked what my top 5 requirements would be in a husband. I spouted off 5 requirements. I think my co-workers were surprised and amused and thought I had gone nuts :) It was all done in fun and silliness, but the more I thought about my 5 requirements, the more I thought, why not?! My 5 requirements were silly and superficial for the most part, but they are what I like in a guy and God knows that. So no matter how silly or superficial they may be, my co-workers may have to eat crow at my wedding, if God so deems to grant me a Christian, Australian-accented, medical doctor who looks like Jesse Spencer and lives in the south! A co-worker did also challenge me to see beyond my own expectations. What if God has something bigger than I can even imagine?! Then, so be it!! I can't wait to see what God has in store. I'm not limited to my 5 requirement silly list. God's bigger than that! I know that God has it all under control and has a perfect plan. Whether I get married or stay single, I know I'll be in the palm of God's hand. My dad reminded me of that on Wednesday as I took communion. So rest in that friends - we are in the palm of God's hand!!

Another adventure that happened this week: I got to hold an Emmy!!!! Back to the whole TV thing, I did tell you I love TV, right?! Well, I have always dreamt of winning an Emmy, a Golden Globe, a People's Choice Award, an Oscar (an Academy Award) and any other award out there for anything TV and/or movie related. Silly dreams, I know, but we all have them :) So Friday, I got to hold a real, authentic, Emmy award!!! It was awesome. I wanted to give an acceptence speech. It was heavy. Yes, it was HEAVY!!! That award must of weighed 10 pounds! I had to hold it with both hands. I have no idea how all the actors and actresses wave these awards above their heads and hold more than one at a time! It could also be dangerous - the wings on the award, well, they are sharp!! It took me 33 years, but I finally held an Emmy. The only thing that would make it even better were if it had my name engraved on it and I was in a fancy dress on stage in L.A. accepting it with a speech I had prepared in front of family and of course the world. But for now, holding my bosses Emmy in Knoxville, TN on a Friday afternoon in my work clothes, with no speech prepared will have to do!

From Emmy Award to driving a lawnmower powered train at my church - Grace Lutheran's - fall festival - it doesn't get any better than that!! That is how I spent my Saturday. It was awesome. It was epic. I was right where I wanted to be, celebrating the love of Christ and driving the lawnmower train. I said more than once, I am pretty darn sure I had the cushiest job there! I loved, loved, loved every minute of it :) I saw so many people, so many kids and I was happy, happy, happy like my shirt (and Phil Robertson) said! I lathered on the sunscreen, got my "Jesus lights my way" hand tatoo and went to town. I didn't wreck, no one fell off or got hit, and we didn't run out of gas - it was a smashing success! I drove that train for 4 hours straight at a rate of 5 minutes per ride. It was pure joy. The wind in my hair, the sun above and kids laughing in the train - nothing better, I say, nothing better! I was reminded once again, how much I truly, deeply love the people that go to my church. It was the perfect day - the weather was gorgeous, the festival was awesome, and the people came! I have to give a huge shout out to all who made it happen. I can't even imagine the hours of prep and the hard, hard work that went into making it another smashing success. You all rock and because of you, people in our community saw Jesus. Thank you from the bottom of my heart for letting me take a small role in that and for letting me have a blast! Again - I tend to (unfortunately) put God in a box, thinking that because I have to use a walker to get around, I can't do things - WRONG!!!! I drove a lawnmower train for 4 hours and didn't have to use the walker to do it! God is so good and amazing. And once again, I am reminded of how truly blessed I am!!

Here's my wheels for the day :)

Here's evidence that I actually was at the wheel of the train. It's the only picture I got using my phone, but I know there's more evidence out there that I was actually driving it!

Since I was driving the train, I didn't get to take many photos, but here's one of some of the crowd :)

Tuesday, September 24, 2013

Tuesday's Tales

Today started off in grand fashion: I washed my hair with body wash. This was NOT on purpose :) Of course, I didn't even notice that I had just lathered my long locks up with Herbal Essences' Hello Hydration Body Wash, until I started to get more out of the bottle. It was one of those moments where I thought, "I can't believe I just did that!" But I had to laugh!! I wasn't quite sure if, after washing it out of my hair, I should use shampoo and conditioner on top of it or not, but I did go ahead and use them. I must say though that my hair has had an awesome coconut extract smell to it all day :)

At work, I got the flu shot! Yes, I'm super excited about this because it was free and now I'm as protected as I can be against the flu. And it was made even more awesome by the fact that I got a Captain America band-aid!

I also got my work badge picture retaken. This was highly needed as now the company is using these badge pictures, not only for our badges but also on our e-mails. My old picture was just that - old, as in 8 years old. It was also 65 pounds ago. I should have my new badge photo in a few days and I can't wait!!

I am so excited because "Chicago Fire" premieres tonight!!!!! I've been waiting for the premiere since the season finale last year and tonight's the night. You should watch it too. It's on NBC and 10pm EST.

Once again, it's the simple things that happened today that added up to make today what it was. I'm just blessed I got to live it. Not every day is great. I get that, I do! Yesterday was one of those days for me. I fell almost right off the bat (first thing in the morning) and couldn't get my footing at all after that. I had a horrible walking day. Other things went awry as well - it was just a Monday - nothing to write home about. But, God gives us do-overs and He calls them the next day :) And today, was full of grace and goodness and laughter. So, I do get that every day is not going to be a bed of roses and I hope you don't think that I don't feel bad for what other people are going through. I just hope that through this blog you can laugh a little (or maybe a lot) because of the silly things I do. Or maybe you can just smile because of the simple things that make me happy :) Whatever is, I hope you keep reading. I'll keep writing if you do!

Sunday, September 22, 2013

Simply happy

This is the day which the Lord hath made; we will rejoice and be glad in it. Psalm 118:24 (KJV)

Here's what I'm rejoicing in today:

I'm ALIVE!!!!!! Have you ever just stopped to thank Jesus that you are alive?! I have! I mean, it's not a given. He brought me into this world and He can take me out! So I'm thankful for another day of life :)

It's SUNDAY!!!! I got to go to church and heard an awesome, God-inspired sermon and got to fellowship with believers. (On a funny note and, I really hope he doesn't mind me saying this, Dad overslept! Yep, even pastors oversleep sometimes. And yes, he did take a shower, brush his teeth and still made it to church on time!)

I got to have lunch with Mom and Dad at their house after church. It was breakfast for lunch and it was really good; but the company and conversation was even better!

I didn't run into any pythons while at Mom and Dad's. Supposedly there's one that got loose and may be in their neighborhood. Umm...who keeps pythons as pets?!!!

I exercised. It still amazes me that I have actually grown to love exercising and that I can actually do it without dying ;)

Mom gave me this shirt as a gift:

It is awesome and of course makes me "happy, happy, happy"!!!

Mom getting me the above T-shirt, makes me think that she and Dad read this blog because I don't think she would have known that I watch Duck Dynasty otherwise :)

I watched America's Funniest Home Videos and it always makes me laugh out loud.

I got these new dishes this past week:
I have Mom to thank for finding them. She actually got some in a golden rod color (or maybe mustard? It's some sort of very pretty yellow!) and I liked them so much, I wanted some for myself (but in the color that fit my kitchen). I love them!!

I'm watching the Emmy's. As stated in an earlier post...I love TV and award shows are right up my alley. Plus all the pretty dresses and who knows, maybe George Clooney ;)

Speaking of's season premiere week!!! Chicago Fire and the Michael J. Fox show are first on my list to watch. I can't wait!!!! Hot guys (hey, I'm not afraid to admit that's why I watch!!) on Chicago Fire and my all-time favorite actor, Michael J. Fox on his new show...what could be better?!

It's officially fall, ya'll!!!

Someone (Sue!) told me at church that she loved reading my blog. Thank you for that!! I'm glad people are actually reading (and thank you to all of those who have told me on FB that you are doing so!)

Now, I must devote my full attention to the Emmy's (because you know, it's very important that I do!) until next time, be blessed and have an awesome first week of fall!

Saturday, September 21, 2013

I'm happier than a duck in water :)

When I think of all my blessings, I can't help but be happier than a duck in water!
Here are some of those blessings that happened just today....

I slept in, listening to the rain on the roof, thankful I had a warm bed to lie in and a sturdy roof over my head to keep the rain out!

I exercised and loved every minute of it. I am so thankful, that even with dystonia, I can exercise. I had always heard of that "runner's high", but I thought it was a joke and people who got it were crazy. That is, until I experienced it myself. I may not be running (I bike on a stationary bike), but I definitely get that high that runners get. The endorphins are amazing and exercising - well it makes me feel awesome!!!

I cleaned my bathroom. Yep, even cleaning the bathroom makes me happy! I also didn't mind doing it because I knew I wasn't missing out on outside activites because of the rain (hey, you have to find a silver lining in everything!)

Not sure if you can actually tell that I cleaned it, but trust me, I did!! The before picture is on the left and the after is on the right ;)

I got to read more of an awesome book - "Sum It Up" by Tennessee Lady Vols (former) head coach, Pat Summitt. I actually gave this book to my Mom for Mother's Day because she said she would love to read it. She did (read it and love it) and even got it autographed! Now she's letting me borrow it :) It's an awesome book, made that much better, because I know some of the people Pat speaks about in the book (LaTina, Dean...) Nothing better to do on a rainy day than read a book!

I washed all my bed sheets, my comforter and all my rugs. I'm telling you, freshly washed sheets and rugs are the absolute best! They bring a smile to my face.

Speaking of smiles, this sure brings one to my face:
I like to call it the redneck fix :) As you can tell, I still have an old school TV in my bedroom and after years of sitting on the shelf with no problems, the shelf gave way and the TV - well it came toppling down. It's dinged up pretty bad, but thankfully not the screen and it still works perfectly! So, I had to have Dad come over and lift it off the floor for me and we had to set up a contraption to hold the shelf up (because the screws were stripped right out of it). And this is what we came up with. This was months ago. But every time I watch TV, it makes me laugh. Sometimes, you gotta do, what you gotta do! I just hope I don't want to read any of those books any time soon! I'll eventually get it fixed (and buy a new TV), but for now, this works perfectly and more importantly, makes me laugh :)

I watched the Tennessee Vols. Whether they win or whether they lose it's still great to be a Tennessee Vol!

I vaccuumed. It's fun, because my vacuum has a light on it. I know you're all super jealous and to make you even more jealous, here's a picture of said vacuum:

Can I just say...I LOVE a vacuumed room!

Of my previous posts (I know, there are soooo many of them with a grand total of 7, but hey, you gotta start somewhere!) The one that got the MOST page views was the one I titled "I'm happier than a camel on Wednesday :)" So that got me thinking that maybe everyone else enjoys the simple things in life, just as much as I do! That makes me super happy!!

And tomorrow is SUNDAY. I get to go to church and worship the Lord. There is NOTHING better in life than to give praise to the One who gave me life and then redeemed my life!!! These lyrics have been running around in my head all day:
"I am blessed beyond the curse for his promise will endure
And his joy's going to be my strength...." (from the song Trading My Sorrows by Delirious?)

And that my friends is why I'm happier than a duck in water! I hope you can say the same and be blessed by all the simple things in life.

Thursday, September 19, 2013

Throwback Thursday: On the Set of Christy

Happy Thursday, Ya'll!! It being Thursday and all, I thought I'd do a little throwback - all the way back to October 1994. I was 14 years old and obsessed with everything having to do with celebrity and TV and movies (OK, 19 years later and things really haven't changed in that department!) My family and I had not even lived in Tennessee a full year yet (that would come in November), when I got to meet a real TV star and go on a real TV location. In the fall of 1994 a TV show started filming in Townsend, TN (about an hour to an hour and half's drive from Knoxville). Our dear church friends had stumbled upon the set of "Christy" starring Kellie Martin (from "Life Goes On" fame) and Tyne Daly. However, since they stumbled upon the site, they had not brought their camera with them. The guy guarding the gate told them to come back and we would let them in and they could take as many pictures as they wanted to. These dear friends of ours knew how obsessed I was with celebrity and TV and asked Mom and I to tag along when they went back. I was so excited, I almost couldn't contain myself! We headed up to Townsend. I, of course being the ever dedicated fan, brought with me my copy of the book "Christy" in hopes of seeing someone famous! I was NOT disappointed. Well, maybe I was a little. You see when we got to the set, the same man that my friends had talked to was there and he recognized my friends, however he could not let us on the official site because, unfortunately, there had been a theft on the set and no one - not even Kellie Martin herself - was allowed on the set without official credentials. I was heartbroken. Truly, I thought my dreams had been dashed - until the sweet man told us that if we wanted to hang around a bit, he had it under good authority that Kellie Martin was coming to the set. I was beside myself again. I would have waited all day and all night. We did have to wait awhile and while we did, we toured the surrounding buildings that were used on the show but not in the "official" compound. It was thrilling and awesome and everything I thought it would be. I didn't even care at that point that we couldn't go into the "official" compound - I was still seeing official houses and set props. I was like a kid in a candy store. I guess a kid on a movie set would be a more appropriate saying! And then, it happened. I met my first celebrity as Kellie Martin drove up! She was so sweet. She signed my book! She took a picture with us. She made my day. And that my friends, is my Throwback Thursday story :) Here are a few pictures from the set:

In the distance is the church and the "mission" house that were a vital part of the series

The Mission House

Inside one of the set houses

Hangin' laundry on the line like they did back in the day :)

Kellie Martin signing my book!

My book and Kellie's autograph (can you tell how worn my book is?! I read it over and over again)

Wednesday, September 18, 2013

I'm happier than a camel on Wednesday :)

Today, I'm happy, happy, happy (in the words of Phil Roberston of Duck Dynasty!) Why, you ask? There's actually no particular reason at all. I'm just glad to be alive and thankful for all the good things in life!
Like the song "It's a Great Day to Be Alive" By Travis Tritt....when he sings:
"And it's a great day to be alive
I know the sun's still shinin'
When I close my eyes
There's some hard times in the neighborhood
But why can't everyday be just this good"

Some things that made my day happy....
I actually made it to the gas station WITHOUT running out of gas!!! This is a huge victory for me, as you see, I tend to push it to the limit and well, that's caused me to run out of gas a couple of times. But hey, like I posted on Facebook, I don't always live dangerously, but when I do, the gas in my car tends to get really low :)
Then, I realized that I actually got 30.5 MPG this trip around and it made me so happy!
It puts a smile on my face when I think about that Geico commercial with the camel who keeps asking "Guess what day it is!" I LOVE that commercial...seriously just ask any of my co-workers and they will let you know how happy it makes me! A few weeks ago, I printed the below picture off for one of my co-workers, Sarah, who despises the phrase "Hump Day". But the sign did make her laugh. Well, today, I walked into work to find the sign on my desk!! And it seriously brought the biggest smile to my face!
The work day was awesome. I am so incredibly blessed to be working in a field that I LOVE! I have the best co-workers, the best bosses and the well, the best job! At the end of a meeting I was in today, someone asked one of our bosses how his father was doing after he had major heart surgery. The conversation went something like this:
Co-Worker: How's your Dad doing?
Boss: He's doing well. He' still hasn't gotten all of his strength back, but he's walking around the house some without his walker
Me: Hey! I can't even do that! So he must be doing well! :)
It's always good when you can laugh at your circumstances, in spite your circumstances!!
After work, I got to go to church, which always makes me happy!
And soon it will be time for a new episode of Duck Dynasty!

I have a phrase I use often "It's the little things in life that make me happy". Today's "little things" added up to huge happiness. I hope you can find joy in the littlest of things too. It's the ordinary things that add up to the extraordinary events that make life worth living. I hope you're happier than a camel on Wednesday and I hope the Joy of the Lord's is yours!!

Sunday, September 15, 2013

A little (OK, maybe a lot of) background!

I've debated back and forth on whether to post this, but have decided to do it: I'm re-posting all my Facebook notes. So, if you've already read these, please feel free to skip this post. It's long - very, very long, so I'm warning you up front ;) Also, I'm being lazy and just re-posting, no proof reading, or deleting or cleaning up. You have permission to completely skip this post! I'm reiterating - it is LONG. It'll probably take you a year to read it all, but once you're through (assumming you do read it!) you'll know more about me than you ever probably wanted to know! You'll also get a huge understanding as to why the name of this blog is what it is :) So here it goes....

I was walking into work one day and tried to step up on a curb. My right foot did what it was supposed to do, but my left foot would not cooperate. I couldn't figure out how to tell it to step up on the curb. I thought this odd, but really did not give it a second thought. Then I started tripping a lot. I chalked this up to me being clumsy. I had to pay more attention to what I was doing and where I was going. Months went by and I continued to trip and fall. I thought the weird thing was that when I did trip I could never, ever catch myself and always fell to the ground. After a couple months of falling, I learned ways of disguising my walking problems. One of these ways was to walk in the grass instead of the sidewalk. My reasoning for this was that it would hurt a lot less if I fell in the grass than if I fell on the concrete. My family visited my brother Stanton on the campus of Vanderbilt University in the fall of 2005 and I started to walk in the grass. My dad noticed that I was "walking weird" and also walking in the grass so he asked me about it. I could no longer hide that I was having problems, so I let him in on what was going on with me. He suggested I see a doctor, but in reality I really thought this was something that somehow I was bringing on myself and therefore I could cure myself. So I waited a few more months. By this time Mom had given me a book on panic attacks to read. I have suffered from panic attacks since I was 10 years old- they are nothing new to me! So I read the book she gave me and there was a chapter in there about a lady who had so many anxiety attacks that she was afraid to walk anywhere. I thought- I didn't think I was scared that much that I would forget how to walk, but it was worth a shot.

I waited until my next scheduled visit with my doctor which didn't happen until April of 2006. When I brought up that I was having difficulty walking and I thought it might have something to do with my panic attacks, he suggested that it was entirely possible, but he wanted me to go see my family doctor to make sure there was nothing physically wrong with me before he started treating me. So, I made an appointment to go see my family doctor, Dr. Rankin. Dr. Rankin also happens to be a family friend. He did a complete physical and said that there was definitely something physically wrong with me. He said it wasn't in my head- actually he said it probably was in my head, but not in the way I was thinking. He said that it was something neurological. He left the room and came back a few minutes later and declared that he had gotten me an appointment with a neurologist for the very next morning at 8am. This completely freaked me out. I thought I was dying, that I had a brain tumor. He reassured me that whatever I had, he would see me through it. It was the first of many times that I have cried in front of a doctor. Not my most proud moment, but definitely one I will never forget. If I had only known at this point that this was the beginning of a very long journey- maybe I would not have subsequently (in the months ahead) prayed for patience. Never pray for something you in actuality do not want, because you will probably end up with it!! Anyway…back to the story… The next morning I went to see the neurologist. He stepped into the exam room and declared that I either had Cerebral Palsy (CP) or Multiple Sclerosis (MS) with hardly a glance at me. He then asked that I get my mom on the phone (I went to this appointment alone). I did and he took the phone from me and asked her a gazillion questions and then hung up and declared that she did not give him the answer he was looking for. I got bold (which really is a rare occurrence for me!) and asked him exactly what he was looking for and he stated that he wanted to hear that I had had a traumatic birth, that I had been diagnosed with CP, something and Mom gave him nothing (good going, Mom!) He did all the neurological tests (which I would get very used to over the next four years!) in the office and then ordered an MRI and an EMG test. An EMG is a nerve and muscle conduction test where they stick these needles into your muscles and then send an electrical shock to them and record the findings--it is NOT a fun test in the least bit and I don't recommend it to anyone that doesn't have to have it!! The MRI was my very first (but unfortunately, not my last!) and if you've ever had an MRI you know that they ask you if you are claustrophobic. Well I didn't know if I was or not, but I do have panic attacks, so I was concerned about being in a confined space. So, the doctor ordered Valium and said that I would need someone to come with me to the MRI (so that they could drive me home after it was done). Dad was the lucky one who got to come with me. My first MRI experience was quite hysterical. I was taken back to the MRI suite and they gave me the Valium. They said that since I had never had it before that they would give me the lowest dose possible to see how I would react and if I needed more they could give me more. They said it would take about 20 minutes to kick in. I swear after 5 minutes the MRI tech came back to check on me and I was already completely out of it. He mentioned that that was the quickest response to valium (by mouth) that he had ever seen! At this point he led me back to the MRI. I could have cared less what they did to me…I was so out of it. It really seemed like the scan took all of five minutes, but in actuality it was more like an hour. I didn't know how out of it I was until it was all over with and a different MRI tech gave me my watch to put back on. I couldn't figure out how to put it on!! I had no idea which way was up or down and I couldn't figure out how to fasten it! The MRI tech was very amused by all of this to say the least. Finally she took the watch from me and put it on me and led me out to Dad who was just as thoroughly amused by me as the tech was! He actually stated that I was walking better on the medication than I did in real life. I was under impression that after my MRI I would be able to return to work- well obviously this was not the case! Dad drove me home and that ride was absolutely hysterical. I mean for those of you that know my Dad, you know he's pretty funny anyway- well you should have seen what I thought of him while I was on Valium. I thought everything that came out of his mouth was just hysterical and I laughed all the way home. Dad said this was just like being drunk except without the nasty hangover the next morning! By the time I got home, Dad was just going to drop me off and go back to work. It's a good thing he waited until I got in the house, because I couldn't actually get in the house without his help. I tried unlocking the door and once again could not figure out how to work the key. He had to get out of the car and come and help me in. Once in, I had to call my boss to let him know that I would not be coming back in that day. I did that and then fell into bed and slept straight through the afternoon and night and woke up the next morning in time to go to work. I walked into work and saw my boss and he just burst out laughing. I asked what I had said the day before to him on the phone (praying to God it wasn't something inappropriate or offensive!) and he assured me that nothing inappropriate was said but he could definitely tell I was on drugs! So enough about my MRI story…lets get back to the real story. After I had both the MRI and EMG tests done the neurologist said that he was convinced I had CP. By this time I had done my homework (the Internet can be both scary and useful!) and I told him I really thought he was wrong. I had not had all of these problems all my life. He was convinced he was right and told me to stop going to the Internet for my answers. What did I know, he was the doctor; I was a 25 year old scared girl! So I went along with him. He said that to treat CP he would inject me with Botox to paralyze the muscles in my legs that had spasms and therefore were causing me to fall. He did this and said to come back in 2 weeks to see how I was doing- I did and nothing had changed. He was baffled and suggested that he had injected the wrong muscles, so he injected different muscles and again said to come back in 2 weeks. I did and again nothing had changed. By this time he was really baffled. He left the exam room and came back a few minutes later with a HUGE medical book and flipped through it. There was one more muscle he hadn't tried. He went and got the Botox and came back and said that this shot would be just like the others. He lied. There is a muscle on the opposite side of where your ankle is and this is the muscle he injected. When he put the injection in it felt like someone was jabbing a stake through the bottom of my foot. I jerked, but he had a death grip on my foot and ankle. It was probably the worst pain I have ever felt (and true, I've never given birth, so it's probably not the worst pain someone can have!) I told him he had lied to me about the shot and he admitted that he did but it was only to get me to relax my foot so that he could get the injection in. He said that there is a nerve right next to the muscle and he must have hit that too- NO KIDDING!!!! It hurt so bad that I walked (OK hobbled!) out of there with worse problems then when I walked in- seriously, I didn't think I was going to make it to the car! But- I did! I held the tears back until I reached the car and then the flood gates opened big time!! I called my mom and said that if this was the answer to my problems, I wasn't taking it...I would live with the falling- it was better than the shot! I went back to the doctor after 2 weeks and there was still no change. Part of me was completely relieved- I wouldn't have to have that shot anymore!! He was completely baffled. None of the oral medication he gave me worked, none of the Botox injections worked. He was out of options. He wanted to send me to a colleague of his at Wake Forrest. I agreed to go. But before I went, he wanted to run a blood test on me to see why the Botox was not working. It came back that I had an antibody towards it.

I went and saw the neurologist at Wake Forrest. Mom went with me and boy am I glad she did, because I'm not sure she would have actually believed me if I told her what he said. First I was seen by a resident who looked just like Will Ferrill- I swear! I almost started laughing. It was very hard to concentrate on what he was saying and asking me to do, because I just kept thinking about Will Ferrell, but somehow I managed and kept my composure! When he left the room I told Mom what I was thinking and she asked who Will Ferrell was. Mom!!! It was totally lost on her, but man, I wish I had taken a picture of this guy :-) Anyway, after he examined me, the "real" doctor came in. He said that I did not have CP in the way that I think of CP or anyone else thinks of CP. He said that my doctor in Knoxville classified it as CP because that is the umbrella term that all neurologists use to classify something they don't yet have a name for. This doctor said that he didn't know what I had but I wasn't dying, my MRI was OK, I owned my own house, I had a great what if I tripped a lot? Did he really just say that? In so many words...yes!! He said that there wasn't anything he could do for me since Botox wasn't going to work and he sent me on my way. This was a huge disappointment. I went over and over and over it again in my head and kept asking Mom if that was really what he said. And she confirmed it. I cried all the way back to Knoxville. I thought, OK, maybe this is all in my head (not neurological but psychiatric!) I decided to "give up" for a little while and try to act like everything was normal. And everything did seem to be somewhat normal for awhile. I tripped and fell a few times, but what was I going to do? Well then it seemed to snowball again and I was tripping and falling everyday. I went back to Dr. Rankin who decided to see if he could get me into the Mayo Clinic. Unfortunately, I was not interesting enough for them. So his next option was to get me to go to Duke University.

Mom and I take another road trip- this time to Duke. Have you ever been to Duke's campus? It's gorgeous!! And on the way back we stopped in "Mayberry" where Andy Griffith grew up. It was a pretty fun time, except for the reason for all of this- my continual falling. I saw the neurologist at Duke who once again disputed the CP diagnosis, but said that I had dystonia. Dystonia is a permanent muscle contracture of no known origin. He said that there looked to be a cyst on my brain, but that there was nothing he could do about it. He also said that the doctor in Knoxville was the cause for my building up an antibody towards Botox. There is something about Botox that if injected so many times within a certain time period it will cause an antibody to develop. Usually people who get Botox injections get them every 6 months (or is it 3…now I can't remember!) and I was essentially getting them every 2 weeks for a couple of months while the doctor tried to find the "right" muscle. The Duke neurologist said that there really wasn't anything he could do that a doctor in Knoxville could do just the same. But he did want to see if physical therapy would help me. So he asked that I get 6 months of physical therapy and then come back and see him. I set it up and started getting physical therapy 3 times a week at Marino Therapy Centers. My physical therapist, Dina was awesome. She was so excited and exclaimed that she could definitely help me. She had never seen this particular ailment before so it was a challenge for her, but she was convinced that she could help. She was amazed at my muscle strength and said that it definitely wasn't my muscles that were the problem. She asked to see me walk down the stairs like a normal person would. I remember praying that my leg and foot would do what it normally did so that she could see that I can not walk down the stairs like a normal person. And it was perfect! I started to go down the stairs and my whole foot and leg just collapsed- thankfully, Dina and the railing both caught me :-) She was amazed and said that whatever I was doing to get down the stairs- I should keep doing it, because going down normally was not an option! 6 months came and went and Dina finally admitted defeat, somewhat! She did an excellent job with me, she really did! But as she explained's just a brain thing...your brain is not sending the signal to your leg and foot to move the right way. She suggested that I see an orthotics person. So I went and saw Garry at Hanger Orthotics. He was fascinated by me too. I should say now that if I had a dollar for every time a doctor/nurse/medical professional said that they had never seen anything like me before, I'd be a rich woman :-) Anyway...Garry was the main man at Hanger and he was enthralled by me. He built me an AFO which is a foot splint. He video taped me walking and said that he was definitely going to use me as an example in the speeches that he gives across the country. And while the splint helped, it did not solve my problems and in some ways created others. I wore it for a good while, but then eventually it found its way to my shoe bin at home. I went back to Duke and the neurologist said that there really wasn't anything more he could do for me. I left discouraged and defeated yet again! And again…cried all the way back to Knoxville (do you see a theme here?!)

I started '08 out tired of going to doctors who had no answers so I basically just dropped the whole thing. I didn't even tell Dr. Rankin that the doctor at Duke couldn't help me, but that I was still having problems. So Mom (as Mom's do!) took it upon herself to tell Dr. Rankin what was going on and I'm really glad she did. I know what you're thinking…patient confidentiality and all that…but earlier I told Dr. Rankin that he could talk with my mom and dad about me and they could talk to him about me. I told him this because sometimes I don't do a very good job of relaying what's really going on (I try to sugar coat things!) and I knew that if Mom and Dad were to talk to him without me there they would tell him how it was straight up and maybe he would understand better what was going on with me. Anyway, Mom had an appointment to see him and in the course of her appointment brought up trips to Wake Forrest and Duke and that they were unsuccessful. This was on a Friday afternoon. On Friday night I get a call and the number that popped up on the screen said "private". I had no idea who that could be, but answered it. It was Dr. Rankin. He called to tell me that he had spoken with Mom and he had wished that I had called him and told him things weren't working out. He said he thought that I had totally gotten better! After we talked awhile he said that he was going to send me to Vanderbilt. He hadn't suggested that I go there before because he said that he thought I had seen the best neurologist in Tennessee- the one in Knoxville. Little did he know that I thought he was the worst neurologist in Tennessee! So I take the trip over to Nashville with my ever-faithful companion on these trips- Mom! Another little side not here: I am very glad that Mom went with me to all of these appointments. I found out that I tend to clam up, shut-down- whatever you want to call it when I get in front of these doctors and they tell me there's nothing they can do. Mom's there to pick up the pieces and ask the questions that I have just forgotten. She's the one to keep her head on straight where as I tend to fall apart. Anyway- back to Vanderbilt. I built myself up for major disappointment- it was the only way that I could feel good AFTER the appointments- to know that I had been right all along and there really was nothing they could do for me. I walked into Vanderbilt and saw Dr. Robertson. She was extremely nice and did all the neurological tests that by now I had become accustomed to. She wanted to see me walk. I have to say that I HATE, despise, abhor (whatever word you want to interject here) this part of the exam. This is the absolute WORST part for me. I just can't explain it, but I hate it. But, I did it for her. Then I handed her the MRI that I had had three years earlier (and had been carrying around to every neurologist!) She left the room and came back with the head of the neurology department who exclaimed that he was not sure what exactly was going on with me and he had never seen anything like this before (another $ in my pocket!). But he suggested that they all have a look at my MRI. There was a computer right there in the exam room so they popped the disk in and started looking. Then both of the doctors exclaimed at the same time "Oh my god!" I looked at Mom, she looked at me. I thought to myself that's either really good, or really bad! Then I said "What?!" The doctors looked at me and then pointed to the MRI and said see that? I did and what I saw looked like a massive brain tumor to me (too much ER watching!!) I asked them if that was a tumor and they said no. They explained that there were the left and right ventricles of the brain. The left ventricle looked fine...the right was massive. It was filled with fluid. It was literally filling up half my brain. Just as a side note, the right side of your brain controls the left side of your body and the left side of your brain controls the ride side of your body. Since my right ventricle was filled with fluid it was affecting the left side of my body. They said that if I got that drained, I would be walking without any problems in no time. I was floored, stunned, and speechless (again, enter any word you would like here). After 3 years and just as many neurologists, I finally had my answer? I couldn't believe it! I asked how the other doctors had not picked up on this and the Vandy doctors could only come to the conclusion that the other doctors had never really looked at the actual scan- they just looked at the report that came with it. I had every emotion possible rolling through my body! And then the word neurosurgeon came into my vocabulary and scared the living daylights out of me. It just never occurred to me that I would have to have brain surgery to get all of this fluid drained. I don't know what I was thinking- it's not like you can have knee surgery to get fluid in your brain drained out!! I guess I wasn't thinking! But for that moment, I didn't think about brain surgery or neurosurgeons or anything hospital/doctor related. I had an answer and I was overjoyed. They wanted their own scans though, so I had to get more MRI's done (this time without Valium- and I was fine!!!) After that we celebrated by staying overnight in the Opryland hotel. I had never been there before and it was all decorated for Christmas (it was November). I had an appointment with the neurosurgeon a week later. He was also in Nashville and is the top pediatric neurosurgeon at Vanderbilt. Yeah- I know, I'm not a kid...but he also treats adults. I did feel a little out of place...I was one of the oldest people in the waiting room, there were cartoons playing and kids books and puzzles :-) And just as quickly as I became ecstatic the week before at the news that this could all be fixed, I became depressed at the news he gave me. He said that it looked like the fluid was just there- not bothering anything, not pressing up against brain or anything and he wasn't sure that the shunt would help me. In retrospect (almost a year later) I should have probably listened to him! I left devastated. But Dr. Tulipan said that he was going to give me a call after he reviewed the scans more in depth. I cried for 2 1/2 hours all the way back home. I was miserable. And when we walked through the door at Mom and Dad's house, Dad informed us that my Uncle David (my Dad's sister's husband) had died in his sleep of an apparent heart attack. That brought me back to reality. I was alive. Yes, I had this walking problem, but I was alive and in otherwise great health. A week went by and Dr. Tulipan called me back. He said that the choice was mine. I could have the surgery or not. He said that getting the shunt would not be harmful at all and that it may not help with my walking but it would drain all that excess fluid. I talked it over with Mom and Dad and decided I wanted the surgery. If there was any chance, any chance at all, that it could help- I was going to take it. Dr. Tulipan had his assistant call me back and we scheduled the surgery for December 19, 2008. I had the surgery and stayed a night in the hospital. I came home and stayed with Mom and Dad. Dr. Tulipan had said that I would need to stay with someone for 2 weeks and be off of work for a month. At the time, I could not imagine why. It was a simple surgery. HA! I understand now :-) I could not sit up for a good 2 weeks without getting nausea or feeling like I had to lay back down. It was the weirdest head was constantly swimming. I thought I would be fine to go to Christmas Eve services. It was the first time I had gotten a shower and dressed in a week. I barely made it out of the shower without collapsing, but I made it. I made it into church and was more concerned about whether people could tell I just had brain surgery than anything else. Thankfully- I have a lot of hair and Dr. Tulipan gave me a huge Christmas present. He had told me before that he usually shaves off the entire side of the head that he is putting the shunt in. I freaked out. I begged him not to shave all my hair off! Mom really took up my case here the time the surgery was to take place, I was resigned to the fact that I was probably going to lose all my hair. I even asked Mom if I could borrow the wig she used when she had cancer- or maybe I could go out and buy hats or something! But the day of the surgery, Mom spoke to every doctor, nurse, medical person that stopped by and begged them to tell Dr. Tulipan to spare as much of my hair as possible. Well it must have worked. I secretly think Dr. Tulipan was afraid of Mom :-) After I awoke from the surgery the first thing I did was look down at my foot and leg to see if I could move them differently and the second thing I did was touch my head to see how much hair he had taken and again I freaked out, because it felt like A LOT!!! But what I didn't know was that he had compassion on me and kept the top layer of my hair and shaved everything under that. So, I guess I technically had a flip-over :-) Every doctor and nurse that saw me after the surgery stopped and looked at my chart and then asked me if Dr. Tulipan was my surgeon. When I said yes, they were amazed at how much hair I still had left on my head. I guess Dr. Tulipan has a reputation for shaving as much hair as possible!! But hey he had compassion on me and no one could tell that I had just had surgery. So anyway, back to church. I made it through the 5pm Christmas Eve service and the 7 pm service. I started to fade at Oma and Opa's for dinner between the 7 and 11 services. While everyone else was at the table, I went and lay down on the couch. But I mustered up enough strength to make it to the 11pm service. I really wanted to go and no one made me except myself- big mistake!! I made it halfway through the service and through communion, but then I turned to Mom and said I didn't feel so well. What happened next is not a glowing recommendation for communion. I bolted out of the sanctuary!! Literally, I think that was the fastest I had walked/run since 2005! I made it to the restroom, just in time to puke my guts out. Poor Kaitlyn Fisher was sent by her Dad to come and check on me and made it right in time to see the whole show :-) I couldn't stop puking. It was NOT the communion wine, but I guess maybe this one night I should have skipped it!! By this time the service had ended and Mom made my brother Stanton drive me home (to Mom and Dad's house). I reclined the front seat and prayed I could make it the 5 miles or so. I did, until we got to the driveway. I opened the car door with Stanton yelling at me that he was still driving up it! But it didn't matter...puke was all over the driveway now and Stanton was glad it wasn't in the car. For becoming a doctor, Stanton was not too impressed with my throw up :-) I must have puked 3 times in the driveway. It was not fun. Dad said that he was too tired that night to clean the drive-way up so Christmas morning he got up and did it before my grandparents and relatives came over. Although by this time, most of it was frozen to the driveway and he had a hard time. I am VERY thankful for my family and the things they do for me and clean up after me!! Christmas was not fun, memorable- yes, but fun- no!!

This year I was praising God for successful surgery and recovery was getting better...if I only knew what lie ahead :-) I finally made it back to my own house in February. Long past the 2 weeks Dr. Tulipan said I would need. But I made it and that's all that matters. Most of you don't know that for 2 solid weeks in February I cried every day- hard. I was extremely depressed and my panic attacks started coming back in full force. I cried all day every day at work, at home, everywhere. I thought I was losing my mind. I saw my psychiatrist, who put me on all kinds of medicine and then I saw a psychologist (yes a shrink!) and then as quickly as it came, it left and I was fine again. One great piece of information I got from my doctors though was if you feel like you are going insane- you probably aren't! Boy was that comforting because I seriously thought I was losing it! I started walking better and better and I finally started to get over the hump. And then April came and my walking started to get bad again. I fell all the time and had no balance. I called my neurosurgeon who decided I needed to see him and he needed to run some tests. I had a CT scan and a shuntogram. A shuntogram is like a spinal tap except on the shunt. The tests came back and my shunt had malfunctioned. I needed another surgery to fix it. I had the shunt revision surgery on May 22, 2009. Dad went with me this time and was with me before the surgery. I was fine, completely fine before the surgery and then 10 minutes before I was supposed to go back, I majorly panicked. If I could have run out of that hospital, I would have!! They hadn't given me any medicine to relax me because they were waiting on a doctor to get there and administer it and I think I just freaked. I have two huge fears about surgery. One is that they won't give me enough anesthesia and I'll feel everything (again, too much ER watching!) and the second fear is that they will give me too much or something else will happen and I'll die. I was totally panicking- to the point where I was getting agitated. My dad quickly saw where this was going and ran and got a nurse who said she would bypass the protocol and give me liquid Valium. It didn't work as great as I had hoped- I was still freaking out, but not as bad. The good news is, I went to sleep, didn't feel the surgery and I woke up after it!! YAY!!! I stayed the night in the hospital and went home the next morning. This time I decided I wanted to stay at my own home. A friend from Alabama came and stayed with me. And then, the depression, panic attacks and fear all came over me again. But this time I was convinced that all of this had to do with the surgery. Some brain chemical must have been disturbed or something, because again after about 2 weeks, I was completely fine again. Although the recovery was quicker in some ways this time around, in other ways it was not. I still had to use my cane a lot longer than I did the first time and by June 22 the same old symptoms came back. I called the neurosurgeon again, went back to Nashville and had the same tests done again and this time the neurosurgeon said that the shunt was working perfectly. In fact he had never seen my CT scans look so good. He didn't know what was going on and he suggested that I go back home to Knoxville, find a new neurologist and start from the very beginning again. AFTER 4 YEARS AND TWO BRAIN SURGERIES?!?!?!!? Was he nuts?! Well...needless to say, I cried for 2 1/2 hours again all the way back home. By this time, I was using a walker to get around and even doing that was hard. I was at my wits end. All of this was starting to take a huge toll on me. Mom mentioned that a woman in church, Cheryl Herbold, had told her that she knew the best neurologist in the area and depending on what Dr. Tulipan had said that day, if I needed a new neurologist I should call her and get his name. I didn't want to at first, but I knew I had to...I had to figure out what was going on with me. There had to be a doctor out there who could get to the bottom of this. There had to be, right? Well I called Cheryl and got the name and number of this doctor. She said that he would need a referral. So I once again called Dr. Rankin and he sent the referral over. I had to wait a month, but I am now convinced that it was a month worth waiting! I saw Dr. Matthiessen on August 10 and instantly fell in love with him (no, not THAT way!!). First of all, he's young. Like 30's maybe early 40's. This is good for me because he can relate better to me (I think!) and he also has a reputation for getting to the bottom of circumstances. He likes the difficult cases. He's energetic and he actually has personality!! A funny thing happened when I saw him though. I was in the exam room and there was this replica of the brain sitting on a desk. He came in and I was so nervous that I was playing with this brain and a piece popped off of it. I was like- great, his first impression of me is that I broke his model brain! He assured me that the piece was supposed to pop off. I told him that maybe whatever I popped off of that brain was the part of the brain that was giving me problems! I actually cried in his office-twice!!- the very first time I met him. I was a little embarrassed by that, but I think he could tell the stress of the last 4 years was definitely getting to me. He asked to see me walk. I hate that these doctors ask to see me walk :-) I told him I didn't want to...and he just laughed and said that was the whole point of my appointment wasn't it? Yes it was, I knew I would have to. He asked if I needed my walker and I told him I would try it without. Yeah- I got out in the hallway and couldn't take one step. So he said I could hold on to him. Which I did and he got me to walk and obviously saw how difficult it was. He told me that whatever I had- it was in my central nervous system. Which means it is either in the brain or the spinal cord. My muscles were fine. He decided that he wanted his own MRI's I went in to have my 4th MRI in a year- that's got to be a record :-) A couple of days after my appointment with Dr. Matthiessen my mom called me and said that I would never believe who was in the paper (I don't get the paper). I asked who and she said Dr. Matthiessen. My first question was whether it was good or bad that he was in the paper :-) It was good! He is taking a 4 day ride across the state over Labor Day to raise money for Parkinson's. I not only have a great doctor but a humanitarian too!! But back to the MRI...I can't just go in for normal MRI's any more now that I have a shunt. The shunt has magnets in it and because there are magnets in MRI's they mess with the magnets in my shunt and reprogram everything. This means that I have to have the shunt re-adjusted every time I have an MRI. Thankfully, it's a non-invasive procedure that does not hurt but can only be done by a neurosurgeon- Dr. Matthiessen could not do it. I did NOT want to go back to Dr. Tulipan for a 10 second adjustment so Dr. Matthiessen said he would find me a neurosurgeon here to do it for me. The doctor he initially wanted me to see said that I should go back to Dr. Tulipan and get it done- I found this to be only a HUGE blessing from God, because the surgeon I ended up seeing was Dr. Whitley and again I was instantly impressed. First of all (again!) he had both personality and the smarts I want in a doctor. Every neurologist and neurosurgeon I had seen before had NO personality. Some of them were super smart and some of them, not so much!! I think what happened here was that God got so tired of me knocking on His door and He got so tired of all my friends knocking on His door that He finally decided that now was the perfect time to give me what I had been asking for! Dr. Whitley is awesome and suggested that all my problems can be traced back to that car accident in December 1999. He thinks what happened was that I had a small tear somewhere in my brain that the CT scans and MRI's taken after the accident could not pick up on (because it was so small). And that it just grew and grew. I compensated until I couldn't compensate anymore. I told him that I didn't start having symptoms until 6 years after the accident. I had brought up the accident to every neurologist and neurosurgeon that I had seen and every last one of them said that the accident was not the cause of my problems. Dr. Whitley disagreed. He said that it was completely possible that I didn't have any symptoms for so long, but that the accident was the root of all the problems. The brain is amazing. He thinks that either there was that small tear that got bigger and bigger over the years or maybe there was some sheath of some kind of substance over some of the membranes in the brain. He has said that I may not even need the shunt at all. He thinks that I got initially better from the first surgery because it drained that fluid, but then when there was nothing to drain it started to "over-shunt" and I started having problems again. It's like the brain got rid of all that fluid and then was like wow there's all this space now- what shall we do? And then it started to over compensate. Dr. Rankin had mentioned earlier (after I had gone back to see him after the first shunt was put in, just for a regular check up) that he was completely amazed. He told me not to take this the wrong way- but he said that basically for the length of time that I had been having all these problems that I had been living with half a brain. Seriously?!?!? Maybe that explains some things :-) Ha ha ha!! Anyway back to Dr. Whitley....he said to test his theory he has set my shunt to the highest level possible. Basically this means that there is nothing draining. The only time fluid would go through shunt now is if I sneezed or coughed or strained in any way. If my walking gets better and I have no headaches then his theory is correct and I don't need the shunt. If that's the case, I'll have to have surgery to remove it- but I say good riddance if all it's doing is making me sick. He said that normally if they put a shunt in someone even if it doesn't help with their symptoms it never actually hurts them and then there's me :-) I always knew I was special! He said that my shunt is actually "hurting" me because (if he's right) it's causing me to be unable to walk properly. He is confident that he can get me back to pre-shunt health. He's not so confident that I will be pre-1999 healthy. OK, so when he told me that- yeah you guessed it, I started crying again. I swear, I am the most emotional person in the whole world!! Agh-sometimes I just HATE crying, but the tears come anyway! Dr. Whitley, just like Dr. Matthiessen, took it all in stride though. He actually (just like Dr. Matthessien!) spent an hour with me. We were standing outside of the X-Ray area at Methodist Medical Center...he had done his job (adjusted the shunt and took X-Rays), but I had a question and he answered it and then I had another question and he answered that until I looked at my watch and he had talked to me for an hour--standing in the hallway, when he probably had a million other things to do!! I thanked him for taking the time and he said it was a part of his job!! No other doctor has ever told me that (clarification, no other doctor except Dr. Rankin and Dr. Matthessien!). I know that whatever lies ahead, I now have two doctors that will see me through it. Dr. Matthessien and Dr. Whitley are now my permanent doctors. No going back to Vanderbilt or Duke or Wake Forrest, I've finally found the doctors for me.

So the journey continues....and yes, I do consider this a journey- a journey, I would have rather not taken, but a journey that I'm on nonetheless. And it hasn't all been bad. I've learned a lot about myself. Things I never would have known had I not had to go through fire to see. I've learned that I have to be bold in some circumstances. I've learned that I have a lot more strength than I usually give myself credit for. I've learned that true friends love you know matter what you go through. I've learned that a smile goes a long way. I've learned that Mom can shop just about anywhere including a hospital gift shop and buy the most amazing things. I've learned that hospital food is horrible, but hospital drugs are awesome!! I've learned why they call it "practicing" medicine. I've learned more about the brain than I really ever wanted to know! Most of all, I've learned that when I am at my weakest, God is at His strongest. God's grace and strength are given to me sufficient enough for that day and that my friends, is all I need!

UPDATE---> September 14, 2009

Almost immediately after the shunt adjustment, I could tell a huge difference. I was steadier and though still using the walker and the cane, I left both of them in the car each night and navigated my way around the house. It's a good thing I live alone :-) I walk like a 1 year old (or maybe not even as good!) I hold on to everything (this may be a good time to mention that it's not a great idea to grab a hold of fridge doors, car doors, unsteady railings or really anything that opens and/or moves...I've learned my lesson!) Walls, name it, if I can hold on to it...I usually am! But in all respects I started to feel better right away. I was (and still am) a little too scared to go completely free of all assistant devices, but slowly (and I mean SLOWLY!!) I'm getting there!

One huge answer to prayer came in the form of Tori Sielken, a member of my church. We were talking about my whole situation and somewhere in that conversation I mentioned that I had tried and failed more times than I could remember at trying to get my medical reports from UT hospital from after I had my accident in 1999. Dr. Whitley had mentioned (as had other doctors) that it would be great to go back to the very beginning and see what that CT scan from the accident said. Well Tori (who is a nurse, although not at UT) took it upon herself to ask if I would like for her to try and get the reports. She said that she has really good friends that work at UT. I told her by all means! And the very next day, I get a text from Tori saying that she has 11 pages of CT scan info sitting in front of her. How the heck she did that, I'll never know- but I will be forever indebted to her :-)

Today (9/14) was my return visit to Dr. Whitley. Mom asked if I wanted her to come along. Since she offered, I accepted :-) And this was another answer to prayer. I had wanted desperately to walk into Dr. Whitley's office walker free. I didn't so much mind the cane; I just did not want to walk in with that dang old walker. But I knew that I probably would have to...I just am not confident enough to NOT use it. But then Mom said she would come with me and I knew I could walk in with just the cane. So I did- Yay me!! :-) (Hey-it's the little things in life that make me happy and I'm celebrating this!!) I gave Dr. Whitley the present I had for him (the CT scans from my accident). I already knew what he would say because I already read the reports and though I am no neurosurgeon or radiologist I knew what they said. What they said was that the right ventricle in my brain was markedly enlarged from what they did not know but suspected a previous white matter injury or possibly prenatal. So- basically, I've had this all my life. Dr. Whitley explained to me that usually up until the age of 2 if someone is born with a brain abnormality (depending on the severity) they can learn to compensate or do things despite the abnormality. After 2 years of age the likeliness of improvement declines rapidly. I learned how to live with whatever my problem was (is). I learned to walk, talk, run, play, learn...everything and then the accident happened in 1999 and something went haywire again. He suspects the accident triggered something inside my brain to act differently and when I started having problems and started getting tests...well the tests showed the enlarged ventricle and what's done to correct that is the shunt. So I had the shunt put in. But Dr. Whitley explained it to me this way: my brain had gotten used to and accustomed to all that fluid and knew how to act despite it and then someone stuck a tube in it and sucked all that fluid out and my brain didn't know what to do with all that it misbehaved and started sending me even more pronounced signals that it didn't like what I was doing to it. So we (actually Mom!) asked him if I had never had the shunt put in what would have happened and he speculated that eventually my body would have regulated itself again and I would have learned to deal with the changes or maybe even gotten better on my own. So, I asked the obvious question: did I do this to myself? Did I make myself worse by having the shunt surgery? And he reassured me that I did not. He said had he been my neurosurgeon back then he probably would have put the shunt in too- because it's all trial and error. He related it to the lottery. If everyone knew that their ticket was the million dollar one they would definitely be there everyday, but one in a million (really-it's higher, but you get the point) will actually win the million dollars and yet throngs of people by a ticket everyday hoping that they are that one. Trial and error- you try something to see if it will improve your life and sometimes it does and sometimes it doesn't. By far the theme of this appointment though was "Rome was not built in a day". Dr. Whitley must have told me that a thousand times today and I'm pretty sure he could definitely tell that I am not a patient person. He would say something, I would counter it and then the old familiar phrase "Stephanie, what did I just say...Rome was not built in a day!! Dang it, if I had lived back then Rome WOULD have been built in a day and answers for brain issues would be answered in an hour :-) I mentioned earlier that the one part of the exam that I absolutely HATE is when I have to show the doctor my walking. Give me shots, make me take tests, but don't ask me to walk! Well, Dr. Whitley wanted to see me walk and I did not want to...but eventually he won out (he is the doctor!) And I walked for him and he was AMAZED. His nurse told him too that I had basically walked back to the exam room by myself without the cane (although in actuality, I did use it!). He was very impressed by my walking and my turn (he said that turns usually get everyone and that's where they fall, but I just whipped around!) I told him that I was still not very good at walking most of the time and that at home I have to hold on to everything and the phrase came back...Rome was not built in a day! He said for 2 weeks out (after the shunt adjustment) I was doing great and that I should improve even more. So the next step...there were two options: he could take the shunt out completely, or he could do minor surgery and clamp the tubing off to the shunt therefore doing the same thing as taking the shunt out, but without major surgery (or me losing my hair again!) After we discussed it awhile he said that he would rather do the minor surgery first and clamp off the tubing and see how that works. If I get better than I can decide later if I want to take the shunt completely out. If I get worse for any reason, he can easily go back in and unclamp the tubing and my shunt will be working again. He said that there was the option of having the procedure done in his office or at the hospital under light sedation. I really wanted it done in his office, because of the earlier fears I mentioned: death being one of them! But after he examined exactly where my shunt was placed, he decided that it would be better for me to have it done at the hospital so I could have a little sedation. So I am in the process of scheduling the procedure.. He also said that he could tidy up my stomach scar (that's where all the fluid is drained to...basically I have a tube that runs from my brain down my neck into my stomach) because it's huge and nasty and I don't know what he's going to do, but he said that he could make it look nicer and there would be no charge!!! (haha...I think he was kidding, but I'm not completely positive about that!) So...I'm just waiting on a date for that to happen. Dr. Whitley said I needed to get a cool cane and I've actually been thinking about this and thinking about long term. As much as I have wanted to avoid it- the fact is, I may need a I'm getting a cool one :-) Mom said I should get several to match different outfits (Mom would say that!) but I'll see how it goes, if Dr. House can make it look cool- why can't I?! Anyway, if I get a new one, I'll post a picture (I need to post a pic of the one I have looks like it's been through a war and in actuality, I guess it has!) I have another appointment with Dr. Matthiessen (the neurologist) on October 14- where this whole story may change yet again! But until then- you've got the latest!

UPDATE---> September 17, 2009

I just got a surgery date set. Actually, I'm not even sure if I should call it a's more like a procedure. It's set up for Thursday, September 24. Again...all Dr. Whitley is going to do is put a stitch in the tubing attached to my shunt therefore making it not work at all. I'll go in first thing in the morning and he said it'll take less than 10 minutes. I'll stay a couple of hours at the hospital and then be discharged and go back to work the next day. I did finally order a new cane. You would have thought I was buying a new car! The "perfect" cane for me would be one with polka dots on it- kind of retro, but I couldn't find one like that with the type of handle I wanted. So I chose another. Hopefully it will be here soon. I didn't realize how expensive canes are- let's just say I better totally 100% like this new cane or I'm sending it back for a full refund! Well...that's it for now :-)

UPDATE---> September 25, 2009

So the surgery went fine. What I had done was have the tubing to my shunt tied off. So the shunt is not working at all now. Dr. Whitley went it through my previous incision right under my rib cage extending through my stomach and tied off the tubing and then actually fixed the incision from the first surgery. I really thought that I was going to be under light sedation, but they knocked me out completely which I guess is a good thing! Suprisingly (OK, maybe not since I had sooo many people praying for me!) I did NOT freak out and this was major because they didn't let any family back into the holding area before surgery (like has been previously done at Vanderbilt.) So I was all alone with my thoughts which is a very bad thing, but it wasn't so bad! I had super fact when she put the IV in, I didn't even know she had done it! The anesthesiologist was really cute, but married-darn!! Actually he was really good too. He said he could give me drugs to calm me down before surgery- I love a guy with drugs :-) Seriously though they gave me this drug and said that it would make me dizzy but then totally relax me and I mean the second it hit my veins, the room was spinning. I did not like that feeling but soon, I was very relaxed (or as relaxed as you can be.) Dr. Whitley came by before the surgery (and before I was given drugs!) to see how I was doing which was nice of him. I was wheeled in to surgery and introduced to everyone in there and then I was out. I found out something very interesting from this surgery. Dr. Whitley went and spoke with Mom after it was all over with and said that I metabolize drugs faster than anyone he has ever seen. The surgery lasted all of 12 minutes and he said that they had to replenish my drug supply over and over and over again. This explains SO MUCH!!! Like how way back in the beginning when I was given oral Valium and it kicked in within 5 minutes instead of the usual 20 min. And when I was given Botox that that didn't work. Dr. Whitley said that if it says to take to aspirin or something like that, that I should probably take 4 because for some reason I metabolize it so fast that two just won't work for me. I even asked Mom if this could be why I seem to have all of my major panic attacks in the evening. I take my medication for them in the morning- it's probably worn off by the evening! I'll have to ask my doctor about that! Anyway, I woke up from the surgery and I immediately noticed I was shaking again. That's happened to me twice now. For some reason the anestesia makes me shake from head to toe, but once I am warmed up, I'm fine. I do remember the nurse asking me if I was OK and me saying that I was freaking out. But I wasn't freaking out and I don't know why I said that! I actually immediately went back to sleep after saying it too! Weird!! Anyway, Dr. Whitley came and spoke with me after the surgery. Really the only thing I remember him saying is that I probably wouldn't remember what he was telling me :-) He did say something about physical therapy and Mike Erwin. This is funny because I know a Mike Erwin. He's one of our friends from Alabama! I found out later from Mom that Dr. Whitley wants me to do aggressive physical therapy. And he was sending me to a physical therapist named Mike Irwin. So it all came together! I came home from the hospital around 11 am and immediately fell into bed. Mom went and got my pain med prescription filled and I took that. I slept ALL day. For some reason, I'm in a lot more pain this time around. It hurts to move really, but I'm sure that will go away soon. Thank you to everyone for all the prayers and thoughts!! The next step will be to start physical therapy. Dr. Whitley told mom that he thinks that I should be able to get function back in my leg/foot again. He said that I will never walk completely "normal" again but, I should get a lot better than I am. And he said that he sends all of his difficult/tough patients to see Mike Irwin. Lovely way to be classified- difficult and tough!!! :-) I had a return appointment to see Dr. Whitley on October 6, but he said that he put in dissolving stitches, so I don't need to see him until 2 months from now-yippee!! I go see my neurologist, Dr. Matthiesen on October 14.

UPDATE---> September 28, 2009

Today was huge. I absolutely LOVE how God takes an ordinary day and makes it extraordinary! It started off the same. I loaded my walker and cane into the car and off to work I went. When I got to work was when it all changed. I parked the car and something (OK, someone- God!) was just whispering in my ear- you can do this. So without really thinking about it (which is really how I have to do things that I am scared to death to do!) I decided that I would not use the walker. I got out of the car grabbed the cane, my purse and another bag and started walking. Then- I have to refer to this like a Peter walking on water moment because that is just what it was- I got halfway between my car and the door and I freaked out! I was like I can't do this, I'm going to fall. But I told myself- you are NOT walking back to the car, just keep on going. And I did. I made it inside and a girl that I don't know personally (but I know she works for the same company and I've seen her in the halls before) was like you are doing so good! She had previously seen me with the walker. That made me feel great- but I was never so happy to see my desk and chair and sit down!! I was so proud of myself. Like I put in my status that day- to some this may seem trivial, but to me it was monumental!! I was talking with my boss, Graham later in the day (he was the first one -except for that girl- to notice that I didn't have the walker!) and he said something that really hit home. He said- what's the worse that could happen? You fall? Well you just get back up again. I mean- they were the simplest of words/advice, but that really has hit home for me. I of course added that I could be mortified as well- but his point was- stuff happens, you deal with it and if you fall, you get right back up and try again. I don't know why but just him saying that completely calmed me. I mean I know that- I've always known that- but I guess I just needed it reiterated to me :-)

UPDATE---> September 30, 2009
So it's now been three days and I have not used my walker AT ALL!!! I walk in to work, around work and out of work without the walker. It's collecting dust in the back seat of my car. I think it's still somewhat of a security blanket for me- knowing that it's there makes me feel good. Maybe by next week I will actually have the guts to take it out of the car and put it back in my bedroom closet where it belongs. Although I have been "walking" for 3 days now, it's not all roses and butterflies. Actually it is butterflies- like in my stomach every time I know I have to walk somewhere. It's still not automatic (like it should be!) I still give walking great thought. I weigh the pros and cons. Like do I really have to go to the bathroom now or can it wait just a little bit longer? (OK, I know that's probably just a little too much information, but now you know what my thought process is!) I'm actually glad that I can not see myself walk because I'm pretty sure it's not a pretty site :-) I got a call from Dr. Whitley's office today and unfortunately there will be no Mike Irwin, physical theray guru, in my future. Dr. Whitley did not know, but it seems that Mike was SO GOOD at what he does that he has gone on to be an instructor and is actually working in Crossville and no longer in Oak Ridge. And Crossville- well that's just a little too far for me to travel for physical therapy- considering it's in another time zone and all. Yes, I'll travel there to see a play at Cumberland Playhouse, but physical therapy three times a week- it's just a little too far!! So Dr. Whitley's nurse said that I could just go to any physical therapist I wanted to. So, I'll probably be giving my old friend, Dina at Marino Therapy a call up here real soon. And yes, I do need physical therapy because using a walker for 3 months did help waste my leg muscles away. I can definitely tell that I'm not as strong as I used to be in that leg. I may wait though to schedule an appointment with Dina until I see Dr. Matthiesson on October 14 to see what he says about me seeing a physical therapist and what he really wants me to work on. I have said it before and I'll say it again- I am not a patient person! And sometimes, I find myself wanting to walk faster than I actually can and that causes me problems. I'm like a walking contradiction sometimes! I mean I really do want to walk normal and sometimes I think my brain thinks I can walk normal and then in the middle of "normal walking" there's a glitch that my brain hits and all the sudden I can't move right again. It's so frustrating!!!! But, then I remember that I am actually doing so much better than I was even 4 days ago and it makes me happy! It literally is almost like Dr. Whitley turned a switch in my brain. I don't feel as dizzy or off-balanced. I feel more confident and more steady. Grant it- it's not "perfect" but from 4 days ago- it's, well monumental :-) I've almost been "afraid" to type this because, I keep waiting for the other shoe to drop like it has so many times before. But, then I remind myself that God has only given us THIS day to worry about (or celebrate!) and that I must not worry about what tomorrow may or may not hold.

UPDATE---> October 14, 2009
Today was my return appointment to my neurologist, Dr. Matthiessen. Today also happened to be the first time in a long time where I actually fell :-( But I will get over the embarrassment soon enough I suppose. Actually I really didn't even fall in front of anyone (although they heard it!) Oh well. I'm writing this update today not so much for you to read (although I'm glad you are!) but for me to sort out all my emotions. It's just been one of those days. I am sick of having problems walking. I want to be "normal". While at Dr. Matthessien's office, waiting for him to come in, I coveted the guy out on the street who was walking down the sidewalk looking like he didn't have a care in the world. I can't walk down the sidewalk like that anymore- not without great difficulty. Every move I make, every step I take is carefully calculated and thought out. But, I have to say right off the bat that I love Dr. Matthiessen. He has the best personality and makes me laugh when all I want to do is cry. Oh and he does make me cry too :-) He even commented on that today saying that he always makes me cry. I reassured him that it wasn't him making me cry. Actually, he is a breath of fresh air! He is compassionate but knows his stuff. But today, I am mad, sad, frustrated, weary and yes even asking why me? I am human after all! So why all the emotions today? I got a diagnosis- just what I wanted. And yet so very much not what I wanted. Let's start from the beginning. Dr. Matthiessen broke the ice by not being able to open my exam room door. He thought I had locked him out- which made me laugh! He immediately noticed that I did not have the walker just the cane (which by the way, he really liked). He asked how I was doing and I said better. He asked why I thought I was doing better and I immediately asked him not to be mad at me but that I had had my shunt tied off by Dr. Whitley. He immediately smiled and said that was a great thing and then said that he wanted to show me something. He said that after looking at my MRI's that I had redone for him he immediately started to worry about my shunt. He showed me the films. And there was this white matter surrounding my brain that I could visibly see and he said that that was not supposed to be there. That scared me! He said that there were only 2 causes for this: meningitis or low pressure. And since I was sitting right in front of him talking he knew I didn't have meningitis. The low pressure was caused by the shunt "over- shunting" and draining too much fluid. It just reiterates what Dr. Whitley said: I did not and do not need the shunt. My brain was used to that fluid and went haywire when it was taken away. Dr. Matthiessen did all the neurological exams again, which he commented I'd probably had done like a 1,000 times before (and he was right!) I told him about some of the problems that I was having that I forgot to mention the first time I saw him. Some of these include: difficulty walking on different surfaces, including linoleum, hardwood, concrete, gravel, pavement, just about anything but carpet, seeing "flashes" of light. Another problem I have is that when I am scared or startled I'll jump just like everyone else will, but only my left side. My right side is perfectly fine. Then came the diagnosis: Apoptosis. I actually had to have Dr. Matthiessen explain it to me twice. Basically it's cell death, or in the words of my brother Steven- cell suicide. He explained (the doctor, not Steven!) that we all have massive amounts of cells in our bodies. Each cell has a life which includes a "death date". We generate cells all the time and then they die off- it's a natural part of life. When I was born I had some abnormality in the right hemisphere of my brain, but it was OK because there were cells there to regenerate whatever happened there. The only problem- those cells grew up and then died. And since I didn't have the normal amount of cells there anyway, what had been taken over by the remaining cells died along with them. This explains everything. It explains why I only had minor problems in the beginning. The cells that gave me function to step up on a curb died, but the cells that kept me walking were still alive. I asked Dr. Matthiessen if the cells died, don't they just regenerate? The answer was no. In Apoptosis they don't regenerate. What's done is done. And there's no fixing it. I won't regain what I lost. It hit me like a ton of bricks. I am so very thankful that I don't have cancer, or Parkinson's or a life threatening or life shortening disease, but I'm 29 years old for goodness sakes! All my friends are getting married and having babies and I'm trying to walk from point A to Point B without falling. Don't get me wrong, I am VERY happy for all my friends who are getting married and having babies and loving life!! I want all of that too, but instead I get handed this. Yes, I know I am having a pity party for myself right now, but it's my party and I can cry if I want to :-) Sometimes (OK most of the time!) I don't think I am as strong as people seem to think I am. I told Dr. Matthiessen there are times I am ready to fight with all I've got, but other times, I just want to crawl in bed, pull the covers over my head and cry until I have no more tears to cry. I told him how confining and restrictive this whole thing has been on my life. I don't go anywhere- and I do mean anywhere- now except to work and church. It's a struggle just to walk into and out of work and the same with church. I wait until I have not a morsel of food left in the house before I go to the grocery store and then I park where there is a cart I can grab a hold of and balance myself with. There have been times I have driven around the parking lot 2 or 3 or more times looking for the perfect spot. And then there are the times that I have driven to the store and driven right back home because I don't even have what it takes to make it from my car to a cart. Dr. Matthiessen really got the sense of what I go through. I told him it was even a struggle to get in the building to see him. He made the comment that this has taken over my life. It has. It has affected me in ways most people have no idea about. Every move I make, every step I take is meticulously, methodically, carefully thought out. I have to tell my brain to pick up my leg, bend my knee, place my foot on the ground, don't spasm up. I am exhausted!!! People have said that I should stop thinking so hard about walking, but when I do that, I fall like I did today. Dr. Matthiessen said that I would greatly benefit from balance therapy. I told him that Dr. Whitley wanted me to get physical therapy. He said that balance therapy is basically physical therapy. And guess where he wants me to go? Back to Marino Therapy off of Cedar Bluff. The same place where I went before and where Dina is. I really hope that she can be my therapist again because she is so good. I'm not sure how much the therapy will help. There is still a lot I don't know about all of this. Will it get worse? I don't know. Will it stabalize? I don't know. Why can't the cells regenerate? I I don't know. I guess this is why I walk by faith. And faith in God is the only thing really sustaining me now. God is good. I am so completely, utterly blessed. Despite it all, I know God cares for me and loves me abd will see me through it. You know the phrase "God doesn't give us more than we can handle"? Well...sometimes I'm not so sure He knows how much I can really handle :-) I'm just kidding about that. In a weird sort of way, I guess I'm blessed that He knows I can handle something like this. I should feel honored! I am closest to God when I am at my weakest. I know this for a fact and it has been proven over and over again. I guess He just wants to keep me close :-) It is so comforting to imagine Him walking right beside me holding me up, keeping me from falling (or if I do fall, keeping me from being hurt!) I've been asking God these days to just give me the strength and the courage and the grace to get through each day. And so far He hasn't let me down. Yes, even in all of this, I can see His blessings in my life and what He is doing in me. I've had to come out of my shell a little bit. I've always been super shy and having this, well I kind of attract attention. The funny thing is I always wanted to be famous- just not in this way!! I guess I need to be a little more specific with God sometimes :-) I wore out the line between me and God this past week. Every chance I got I asked Him for a diagnosis. That's all I wanted. I didn't want the appointment with Dr. Matthiessen to be a wasted one. I didn't want him to say, well I don't know what's wrong with you, have a nice day. I got exactly what I wanted and yet somehow not at all what I wanted. This diagnosis really came out of left field for me. I mean, I thought I had researched every possible thing that could be wrong with me. I had never even heard of apoptosis. The funny thing is, when I talked to Steven (my brother) on the phone the first thing out of his mouth was "I know what that is!" My 18 year old brother! I should have paid more attention in biology because that's where he said he knew it from! Dr. Matthiessen said that apoptosis is not uncommon. He sees it a lot in brain injury patients and the like. So...I still have a lot of questions and there is a lot of unknown for me. But I got what I wanted, a diagnosis :-) I have a feeling that God is going to do amazing things in my life- I've always felt that way. I have no idea what they are and I certainly didn't want them to come about this way, but whatever they are, I'm ready! I really now know what Paul was talking about when he had the thorn in his flesh. This (my walking) will always be a reminder that we are not perfect, but also a daily reminder of God's grace and love in my life. While I wouldn't have chosen this for myself, it's what I have and I can either choose to look at it like a thorn or like a gift and I choose gift. Kind of a weird gift, but nonetheless a gift. I just hope that I can use it wisely to bring people to know the God of all healing. I don't want it to define me, I want to define it. This is what I am having the most difficulty with right now. So, I'll just take it day by day, that's all I can do. I've never thought of myself as a strong person (either physically or mentally!). Maybe God is trying to change that- I sure hope so! And the journey yet again continues....

UPDATE---> October 17, 2009

Well what do you know, it looks like Steven was right all along about my cells committing suicide. I've been doing some research about Apoptosis and most of what I found makes absolutely no sense to me; it's a whole different language and I am reminded why Stanton was the one to go to medical school and not me...the words are in English but none of it makes sense to me :-) However, I did find this definition on

Apoptosis: A form of cell death in which a programmed sequence of events leads to the elimination of cells without releasing harmful substances into the surrounding area. Apoptosis plays a crucial role in developing and maintaining health by eliminating old cells, unnecessary cells, and unhealthy cells. The human body replaces perhaps a million cells a second. Too little or too much apoptosis plays a role in a great many diseases. When programmed cell death does not work right, cells that should be eliminated may hang around and become immortal. For example, in cancer and leukemia. When apoptosis works overly well, it kills too many cells and inflicts grave tissue damage. This is the case in strokes and neurodegenerative disorders such as Alzheimer, Huntington and Parkinson diseases. Apoptosis is also called programmed cell death or cell suicide. Strictly speaking, the term apoptosis refers only to the structural changes cells go through, and programmed cell death refers to the complete underlying process, but the terms are often used interchangeably.

So apoptosis works OVERLY well in my body, killing off too many cells therefore committing cell suicide. I'm slowly figuring this out...

UPDATE---> October 24, 2009

So I've had my first full week of physical therapy. Three times a week for about an hour. It hasn't been too hard; in fact sometimes I wish it were harder. I'm pretty sure that only my family and maybe my closest friends know this, but just like an athlete (of which I am not!!) I am fiercely competitive with not so much other people, but definitely myself! I have my own time frame for things and sometimes it slower than the worlds and other times is a lot faster than the worlds! Although I'm still not 100% into this physical therapy I want it to show results instantly and that certainly is not the case! My initial appointment was on Monday, Oct 19. When I know I have to do something- I hate putting it off. So yes, I got the diagnosis on Wednesday the 14th and was told that physical therapy could help, so by Friday the 16th I was on the phone with Marino Therapy and had an appointment for Monday. My physical therapist's name is Kristal. The first appointment was basically me giving my history- how many times I have done that! I really almost didn't even know where to start- so I started with the obvious (or maybe not so obvious!) fact that my issues are brain related and not muscular. It was a good first appointment. At my second appointment on Wednesday, Kristal gave me a balance test. I scored 4 points below normal. Actually Kristal said that wasn't horrible. But it's definitely something to improve on. Also in that appointment, I worked on strengthening my ankle with some exercises and stretches that hopefully I'll be motivated enough at home to do too! I left Wednesday's appointment with Kristal promising we would work on walking come Friday. And that's just what we did on Friday at the crack of dawn-literally! My appointment was at 7am and the sun had not yet risen. For all the times I have wished that I could walk "right", Friday was a day in which I wished I could show Kristal just how hard it was for me to walk. It didn't happen. Of all the days, I was actually walking pretty good. I still had the cane, but probably could have forgone that even. I even wore different shoes so she could see how I walked. I think part of the problem is that Marino Therapy Center is all carpeted. I had told Kristal of my difficulty walking on different surfaces, with carpet being the one surface that was actually good for me. She suggested we go outside in the parking lot. So we did- in the pitch dark! We actually laughed at what we thought people driving by were thinking about us. She saw a little of the struggle I have, but again, it was overall a pretty good walking experience. Only later in the day did I have problems! Why couldn't she have seen those?!? Oh well. We came back into the center and lo and behold who do I see, but Dina! She said that she saw my name on the schedule and had to come and say hi. We talked for rather a long while, she, Kristal and I about everything that had been going on. I kind of hope that Dina and Kristal will get together and compare notes and come up with the best solution for me. Then Kristal asked how I felt about treadmills. I'm indifferent about them! I actually have a treadmill at home thanks to someone from church, but ever since getting it, I haven't set foot on it. Actually, that's not true. I've set foot on it, just not while it's moving :-) For some reason, I can't get on it- physically can not get on it. But Kristal's treadmill (or I should say Marino's treadmill!) is different. They strap you into this harness thing and even if your legs give out, you won't fall! It's amazing...I seriously need this at home! So I told Kristal I was fine with a treadmill if I knew I wasn't going to fall. So she strapped me in and I walked 10 minutes on it. But it's in front of this mirror so your staring at yourself and what I noticed was that darn left leg and foot. It really almost looked paralyzed and I guess in some ways it is. The funny thing is, I've never actually seen myself walk, so I didn't know what it looked like. I could definitely tell that there was something not quite right about my left leg and foot. It dragged, it was positioned funny, it just didn't do what it was supposed to. Kristal obviously noticed it too. I told her that it is so frustrating that as much as I put my mind to it, my leg and foot do not do what I want them to do or go where I want them to go. It's almost like my brain has to catch up- to what I have no idea! But this played out (as it often does!) just walking. I walking from the treadmill back to the curtain area and I just froze mid walk. It's like I've forgotten how to put one foot in front of the other. I have to stand there for several seconds, balancing myself and physically telling my brain to make my leg work- pick it up, bend my knee, place my foot on the ground. And then once my foot hits the ground I have to make sure that I don't curl my toes under or stand on the side of my foot. I told Kristal that where once it was just my foot and ankle that were having problems, it's now my knee too that's not getting the message to bend. In fact It's much easier for me to walk stiff legged than to actually bend my knee, I just can't do it all the time anymore. And with all of this, it's not a permanent thing. I mean, sometimes I can use my leg, knee, ankle, foot just fine- the way everybody else does and then other times, I can't move them. Once I did make it back to the curtain area we did more ankle exercises and she tried electrotherapy. Actually, I'm not sure what it's called- that's what I call it :-) It was the end of my session, so it was only just testing to see if it would be something that Kristal would want to try at my next appointment and I think we are going to try it. I really hate the feeling of it, but if it will get me to walk any better, I'm up for anything right now. I am still extremely frustrated with myself and this condition. I've got to get it in my head that this isn't going away, at least not anytime soon. I'm still under the impression that maybe with the next doctor's appointment or the next physical therapy appointment, I will go in unable to walk right and come out walking perfectly. I know that won't happen. My head tells me it won't but my heart still has hope, so when I fall or trip or can't move, I get that much more frustrated with the whole thing.

UPDATE---> OCTOBER 25, 2009

I forgot to me mention yesterday that I also learned a new word last week in physical therapy: proprioception. Proprioception is "the sense of the relative position of neighbouring parts of the body. It provides feedback solely on the status of the body internally. It is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other." ( So in other words my proprioception is off. I don't know where my legs are in relationship to the ground- that's why I fall and/or trip so often. Those nerve endings in my feet and legs don't sense exactly where the floor is and they don't sense that I will be "safe" putting all my weight on me feet and be able to support myself. So I have to relearn those things. Kristal said that that is probably why I have so many problems walking on different surfaces. On carpet and grass and things that give and yet have a roughness, a texture about them, I'm fine because those nerve endings sense that there is something there. On smooth, slick surfaces there are no sensors. This also explains why I really have to concentrate while I walk and actually look at my feet to see where they are going. My proprioception is not kicking in and therefore I don't know where my feet are in relationship to the ground, so I physically have to see where they are going and even that doesn't help all the time! I am continually amazed at the things that I am learning throughout this whole process! And today I was reminded that even though I may be missing brain cells and other brain cells are committing suicide, I still have a memory! Probably the best in my family, if I do say so myself! My favorite game growing up was Memory...I won just about every time! With all this brain trauma and surgery and again the cell suicide, I am amazed (and very thankful!!) at how God has given me my memory.

UPDATE---> November 7, 2009

Not a lot of new information or things to tell, except for the fact that I am going back to see Dr. Matthiessen. I started having more and more questions about the diagnosis. People would ask me about it and I started to realize that I didn't have the answers to their questions. I also started realizing that the questions people were asking me, I had started asking myself! I really didn't know what to do. I called Dr. Matthiessen's office and asked them what I should do. His nurse called me back and I first thought maybe I could ask her the questions or maybe I could talk to Dr. Matthiessen on the phone- but in the end we both realized that it would be best if I just come in and ask him everything in person. I guess that's a good thing too, because once I started writing down my questions, well, lets just say I have about 2 pages worth so far :-) And I don't go and see him until November 17, so who knows how many more questions I'll have by then! And then Dad got me thinking all over again that maybe apoptosis is not an actual diagnosis but a symptom of something. In actuality all the research I've done kind of leans toward that- that it is a symptom of other diseases, but I so wanted this to be the end of the road- a real diagnosis. So that will be one of my questions- is apoptosis an actual diagnosis or is this a symptom or the beginning of a disease. Physical therapy has been going well. Kristal is great and I am finally feeling the effects of the therapy. By this I mean, when I do the stretches Kristal wants me to do, I can actually feel my muscles burning a little bit. For the first week or so, I thought the stretches were useless because I couldn't feel anything. Kristal-like every other doctor, surgeon or physical therapist I have been to- finally started to see how impatient I really am! And once again I was reminded that this is a marathon and not a sprint. Things just don't happen overnight (although I would love it if they did!) I have, unfortunately, fallen. I chalk it up to be over confident in my abilities (it's that impatience again!!). It was the Friday before Halloween and I had had physical therapy that morning and had been having a pretty good walking day overall. I mean I still used the cane and everything but, I felt steadier than I had in awhile and it was a good day. So I decided to walk to the mailbox instead of just pulling up to it in my car. Yeah, this probably sounds like the simplest of tasks and for most people it is, but not so much for me. And when I do walk to the mailbox, I usually walk in the grass because I seem to have more control that way. But that Friday I was feeling a little more confident and decided to walk (with the cane of course!) on the driveway. I got almost all the way to the mailbox and the next thing I knew I was in the grass. I must have literally flown threw the air or something! I was so completely embarrassed. The first thing I did was look around to see if any of my neighbors saw me and thank goodness no one was around! I didn't hurt myself but to this day wonder how in the world I got from the driveway to the grass!! I guess it was just God's way of protecting me, if I had to fall in the first place. And yes, on the way back to the house, I walked in the grass. I wasn't about to fall twice in one day. And when I went back to physical therapy, I of course had to tell Kristal that I had fallen. So now every time I come in, she always asks if I've had any accidents! Thank goodness, so far I can say no. I started working on going down stairs at physical therapy. I find this a little funny since I still seem to have lots of problems walking on flat ground, but I do want to know how to walk down stairs right again!! If I have to, I can go downstairs, but it's not like how everyone else walks down stairs. And believe me, I was hanging on for dear life just walking down the 3 steps they wanted me to at physical therapy. But I'm working on it and that's all that matters. It's funny though how I perceive things now. I mean, just today I was watching a movie on TV and this girl comes running down the stairs and my mind goes from what the movie was about to, "wow, look how easy it was for her to run down those stairs! If I had even attempted that I would have rolled down them because I would have fallen!!" I will say one thing though- I kind of wish I had some of the equipment they have at physical therapy!! It's awesome. They have this ball thing, well it's flat on the bottom but the top is like an exercise ball. Kristal wanted me to stand on it and rock from front to back, side to side, march on it. I thought at first she was nuts, because I thought for sure I would fall, but when I got on it, it turned out to be great. Of course, Kristal demonstrates first whatever she wants me to do and she does it perfectly, with ease and not holding onto anything for balance and then I get on and hang onto railings for dear life! Oh a funny thing did happen yesterday at PT. I was on the treadmill of course hooked up to this contraption thing that if I slipped or fell, I wouldn't really fall, it would catch me. Well, this other physical therapist walked by with a patient and I turned to look at them thereby breaking my concentration and train of thought, thereby losing my balance and was I so ever glad I was hooked up to that silly contraption thing!! It startled both Kristal and myself but since it's impossible to fall we both started laughing! I mean I did trip, but at least we know the contraption thing works!! I know most people do not like physical therapy, but I'm actually kind of enjoying it. Yes it's work, but if it gets me walking then I'm all for it. And I really like the people at Marino Therapy. All around it's been a great experience so far. Yes, I still get very frustrated with this whole situation and this week was no different, but at the same time I am blessed that I can have therapy and that I do get to go back to the doctor and ask my questions and hopefully in the end, I will come out with more answers and be stronger than I was the day all this began- physically, mentally, emotionally and spiritually. I just have to keep reminding myself to take one day at a time, sometimes one hour at a time and it'll all work out!

UPDATE--> November 17, 2009

Today was my return appointment to Dr. Matthiessen. I had decided that I DID want Dad to go with me to the appointment. So armed with my 39 questions (yes, I know that's a lot- don't laugh!) and Dad we made our way to Cumberland Neurology. I have to say that bringing Dad along was the BEST decision. First he made laugh just doing silly things in the exam room while we were waiting. And he got his own free doctor's appointment because the room was full of information (posters) on migraines which he has. So he learned a lot of valuable information :-) But then when Dr. Matthiessen actually came in the room, Dad let me start asking the questions, but just a little ways into it, he could tell I was getting a little emotional about the whole thing so he started asking the questions! I mean how hard is it to read off of a piece of paper? Apparently, for me EMOTIONAL!! Anyway, Dad took control. And when Dr. Matthiessen answered a question, I saw out of the corner of my eye that Dad was writing down notes. I probably would have been too embarrassed to do this, but was secretly thankful that he did. And I was just glad he was there to hear everything Dr. Matthiessen said because the "two heads are better than one" theory is always good!! So we did get some answers. Some of the answers were "I don't know", but that's OK- because at least he was truthful! Dad stole my questions paper (actually he took it with him so he could make a copy for himself!) so I can't remember all the questions or answers he gave us but here's a highlight:

Q: Is Apoptosis a symptom or a diagnosis?
A: It's a diagnosis. It's not a disease. It won't turn into MS, Parkinson's, Huntington's or any of the other central nervous system diseases, but it is a diagnosis. It's a process. More than likely the "injury" to my brain happened at birth and the cells are dying off now.

Q: Will it get worse? Will cells keep dying off? Will I lose more function?
A: Dr. Matthiessen doesn't know the answer to will it get worse. He hopes that it has stopped and that the cells that are still alive will stay alive by my doing physical therapy and keeping them active. He's not sure I will lose more function or not, but is hoping that what's done is done and he can prevent any more cells from dying off

Q: Will this effect me mentally?
A: So far the only cells that have died are motor cells. He said it is possible that other cells (the ones that effect mental status) could die off, but in my case it looks like just motor cells are effected.

Q: Why is it that some days are "great" and some days are "horrible" (in regards to walking, balance, feeling steady)?
A: This could be due to blood pressure, blood sugar, really anything that regulates the body. If just one thing is off kilter, that can make me have a bad day. Dr. Matthiessen said that if I got the flu, or an infection or a cold that it will be harder for me to get over those things than it would be for a healthy person, because the brain has some control over those things and it would just be harder for me to fight off those things. Thankfully, I have a pretty high immune system and tend to stay pretty healthy.

Q: Can I retrain my brain to walk on surfaces other than carpet or grass (or textured surfaces) without tripping, slipping or falling?
A: To this Dr. Matthiessen asked, "You mean other than repetition and repeatedly walking on those surfaces? No...there's nothing you can do, but repeatedly walk on them and train your brain to know that you won't fall!"

Q: Will diet and exercise help?
A: The normal diet your mother brought you up with- 3 meals a day will be fine. A multi-vitamin will help. You should especially take Vitamin B.
Side note here: what does Vitamin B actually do? I'm going to have to look that one up!

Q: How much will physical therapy help?
A: It will keep the cells that haven't died off yet from dying off.

Q: Should we seek a 2nd opinion (actually in our case it would be the 6th opinion, I think!)
A: Dr. Matthiessen said he was not going to tell a patient that they couldn't get a 6th opinion :-) He said that he would give us a referral to Mayo if we wanted it but he is pretty sure they would give us the same answer.

Q: Could this turn into Alzheimer’s? (yes, I did actually ask this!)
A: Dr. Matthiessen said he didn't want to scare me, but in brain trauma patients there is a higher possibility of developing Alzheimer’s. (OK, it scared me for like 2 seconds and then I thought...I've got a lot more things to worry about before we get to that stage and I quit worrying!)

Q: Did I ever need the shunt? Should it be taken completely out?
A: No, I never needed the shunt. I never had hydrocephalus. That was apparent when Dr. Matthiessen took the repeat MRI's and a white film (substance? I can't remember what he called it!) showed up on the MRI and it surrounded my brain. He said that this was abnormal and could only mean two things: infection (meningitis) or low pressure. In my case (thankfully!) it was low pressure. The shunt was draining fluid that was supposed to be there, thereby making me worse. Dr. Whitely tied off the shunt but didn't take it out completely. Dr. Matthiessen said it would be up to Dr. Whitely to advise on whether I should have it removed completely. If you think about it, I have this device in me that's not doing a thing- so I go back to Dr. Whitely on December 1 and we'll see what he has to say.

Q: Were my panic attacks caused by this apoptosis?
A: No, absolutely not. I may have more panic attacks now since the stress of not being able to walk may induce them (which unfortunately it has- I have had a few more than normal since all this began, but thankfully they are just little) but apoptosis did not cause and was not the source of the beginning of my panic attacks.

OK, that's all the questions and answers I can think of right now (a far cry from the 39 I had written down, but thanks again to Dad, he grouped a lot of my questions into one question before asking Dr. Matthiessen...I think I started repeating myself!). When I get my sheet back from Dad, I'll post more. All in all (although there were tears!) it was a great appointment and I'm very glad I got answers and that Dad went with me!

UPDATE--> November 22, 2009

Well I got my notes back from Dad. Actually I should say I got my questions with Dad's notes written, back from Dad. I think it was a fair exchange. We met at church, he gave me my notes and I gave him a sock I accidentally took home with me after I washed my sheets at Mom and Dad's!

I kind of think it's funny looking at what Dad wrote :-) Remember I had 39 questions written down and he circled 8 of them and put a check mark by one of them- guess I should have asked him what those notations meant (although I think those were the most important questions in his mind to ask!) I really did remember most of (if not all!) the things that Dad wrote answers too and posted them in my update above. But I do like the way he wrote the answers to some of the questions, so I'll reiterate them (the answers are all the way Dad wrote them!)

Q: Is it going to progress?
A: Can't answer that

Q: Will it eventually turn into a disease like MS, Parkinson's or Huntington's?
A: No

Q: Should I go to Mayo Clinic?
A: (He) would always agree to 2nd opinion but he strongly feels this is an end game evaluation.

Q: Are there any studies or experimental drugs that would help?
A: or (these are web-sites that he suggested I visit)

Q: Will weight loss, nutrition have any effect on this?
A: take a multi vitamin; especially take Vitamin B. So I really wondered what vitamin B was for. Well, I went to the store yesterday and looked at it and right on the bottle in red letters it say "B Vitamins help support cellular energy production." Who knew?! Well, obviously the doctor (that's why he has the MD and I don't!) So I bought it and have started taking them. Hope they work!!

Q: Are there successful methods to retrain the brain?
A: long time therapy

Q: How come there seems to be no rhyme or reason to when I can't walk and when I can?
A: This is normal. Differences in blood pressure....

And these are more of Dad's notes...not really answers to questions but just notes...

- birth trauma was the most likely cause of all of this
- Apoptosis can continue or may not
- way low pressure (this was in regards to what Dr. Matthiessen found on my MRI)
- Brain lit up: either massive infection (not) or very low pressure (again in regards to what Dr. Matthiessen found on my how Dad referenced how my brain was all lit up- reminds me of a Christmas tree!!)
- Damage to brain: less able to withstand flu, etc. (example: Alz. patient gets flu and really regresses)
- Use it or lose it

I really like how Dad ended his notes. It's what Dr. Matthiessen said, but I guess it has to be reiterated: Use it or Lose it. The only way I'm going to keep my body from losing more cells is to use them. Physical therapy is going to become my life (I have a feeling). He in so many words said so. It's going to be an on going process. One good thing about this is I called my insurance company and I have an unlimited amount of visits to physical therapy with my plan. They do evaluations after 25 visits (send the PT's a form to fill out to monitor my progress) but if the PT says that I am progressing and I really need it (the physical therapy), the insurance will keep paying for it- yay!! I also broke down and bought a Bosu Ball. I use it in physical therapy and actually really like it (I know, I'm weird!!). It's actually very hard although it doesn't look like it would be. This is what it is:
So, hopefully I'll be getting that soon and hopefully I won't fall off of it!! I am using the walker every now and then (I used it on Wednesday and Thursday, but not on Friday, Saturday or Sunday). Again, I think this will be on going too. It's there if I need it and if I don't - great! This is my life now. I am all for getting 100% better and never having any of these problems ever again, but if God doesn't choose to take this away from me, then this is what I'll have to live with and we all have our "things" that we have to live with. I'll have my good days and I'll have my bad days. And despite it all I am still unbelievably, undeniably blessed!!

UPDATE--> December 1, 2009
Today I went back and saw Dr. Whitley (the neurosurgeon) and basically his advice was to go on vacation. Seriously- that's what he said. He said I needed to get away from it all, get out of town and have some fun. I asked him if he could write a prescription for a vacation and he said he could, but he wasn't sure Aetna (my insurance) would approve it! Oh well...The first question he asked was if I felt any better than I did a year ago at this time. And I told him- to be honest- I hadn't had the shunt surgery yet (that came on Dec 19, 2008) so I couldn't answer that question. In some ways- I am totally better and in other ways not so much. It's definitely been a very eventful year. If I had known on December 1, 2008 that by December 1, 2009 I would have had three surgeries, and been through 4 more doctors- well, lets just say that I'm glad God doesn't allow us to see the future, because knowing me, I probably would have panicked! Dr. Whitley said as for the shunt- he wants me to leave it in for at least another 6 months or so. He said that he wants me to be in a good place mentally. I guess he could even see what a toll all of this is taking on me mentally :-) He said that if it would make me 100% better he would do the surgery tomorrow, but seeing that I could live my whole life with the shunt and be none the worse for it (since it is tied off and isn't working at all!), he wants me to wait to make absolutely, positively sure that a week, a month a year after I have the shunt taken out, I don't doubt my decision or wonder if I should have kept it in. But--there is absolutely no reason that I need it at all. He did make that clear. I told him that Dr. Tulipan (the neurosurgeon at Vanderbilt) told me that during the second surgery he had some problems removing the shunt because brain matter, brain, or whatever had actually grown around the shunt. Dr. Whitley did say that that would be one concern about removing it. It may be entwined in so much brain matter that removing it would cause even more damage. He said it could bleed a lot and that wouldn't be good. But none of that would be visible until he got physically in my brain. So it's just another thing for me to think about if I decide to have the shunt removed. I told Mom when I called her tonight that today's appointment was more like a therapy session than it was a doctor's appointment. I could definitely tell that Dr. Whitley wanted to make sure that I was OK mentally with everything that has happened this past year (and the preceding 3 years) His honest advice was for me to take a vacation. He suggested somewhere where no one knows me and he told me to just throw caution to the wind and live life. He said that I was still so young (ah, thank you!! I feel older by the day!!) and that I just need to get on with my life. I need to have fun, I need to not think so much about this walking problem. He did say that he thinks in a year from now that I will be even better. He kind of reiterated what Dr. Matthiessen said about just learning to walk again, not caring so much about what other people think and just getting on with life. I told him that "just living life" is sometimes easier said than done :-) Which he agreed with, but still...So I'll revisit getting the shunt removed in 6 months or so--or maybe I won't---who knows! I do know that as much as I love Dr. Matthiessen and Dr. Whitley, I am really over going to see doctors. It seems like that's all I've done this year. My insurance was definitely used and I was definitely so very thankful for it!! On another note, I checked my hair growth and may, I repeat, may, chop all my hair off to the length that the shaved hair has grown back to. It may still be too short, but I'm definitely ready for something different. I was keeping my hair long just in case another surgery was on the horizon, but now- who cares?! I might as well chop it all off :-) That's still to be determined...I reserve the right to change my mind (once again!) I might have said this before (I definitely said it to Dr. Whitley) but my 20's were not at all like I expected them to be and I spent more time seeing doctors and surgeons than I ever wanted to, so next year- 2010 when I turn 30, I have faith that I will start to actually live again. I feel like now, after seeing Dr. Matthiessen and Dr. Whitley again, that I can start to put all of this behind me. It'll always be there- I'll always have some sort of issue walking and of course I am continuing the physical therapy, but I'm starting to feel like with the end of the year approaching, I may just be approaching the "end" of countless doctors appointments and having the feeling of "not knowing". I have a diagnosis. I have good doctors. I have a treatment plan (for the most part!). I have an understanding that this may or may not get better. Now it's time to start focusing on other areas of my life and maybe, just maybe take that vacation Dr. Whitley prescribed!

UPDATE---> April 8, 2010
Wow! I can't believe it's April already. Seriously- it just seemed like Christmas yesterday :) So it's been 4 months since I last posted and actually I really thought that would be my last post. But, life keeps moving along and I thought I would update you a little on what's been going on. First, it's almost time for another doctor's appointment- oh joy! (that was said/written with sarcasim- haha!!) I go back to see Dr. Matthiessen next week on the 13th. Since last posting, I've cut my hair and now it's almost back to normal...meaning, I could put it up in a ponytail and no one would be able to tell that it had ever been shaved. It's the little things in life that make me happy!! I've also gotten a little bit braver. I'm doing all my own shopping, running all my own errands and don't mind so much anymore who really sees me using the walker. I said, I don't mind SO MUCH!! I still mind, still get embarressed, but everyone at church knows what's going on (and if they don't, they don't say anything!) and everyone in my department at work knows what's going on. And for the people I don't know- I don't really care what they think! And yes, I have been using the walker pretty much on a daily basis. It's an ever-present friend (or maybe that's foe?!) I mainly use it to get around in open spaces. Sounds weird, but if I have a wall to hang on to or a cube or a pew or a chair (get the picture?) I can get around with just the cane, but open spaces, like parking lots are really hard, because there is nothing to support me but a cane, and the cane just doesn't do by itself in those situations. I wanted to thank all of you that have said that I am "handling everything so well". My usual response to that is "Well, you don't see me alone in my house!" But in all reality, I don't go home every night and cry my eyes out or anything. I do have times and days and sometimes even weeks where I am totally down about the whole thing, but that's life! It does seem to be however that I will have a couple of "good" weeks and then a couple of "bad" weeks per month walking wise. The "good" weeks are when I can actually just use the cane to get around most places and in my house, I don't use the cane or the walker :) The "bad" weeks are when I can't get around at all without the walker anywhere. I can't get my balance, I can't get my footing or anything. But thankfully, now I know that when there are bad weeks (and sometimes it's less than 2 weeks and sometimes it's more!) I know that there will be good weeks to follow. I fell for the first time in months on Easter Sunday (of all days!) I was having a bad day (walking wise that is, the rest of it was AWESOME!!) and was going to bring the walker with me to church. However, my car had died a few days before and was in the shop, so I had to rely on Mom and Dad for rides. Mom came and picked me up, but had 3 other people in the car with her, so needless to say, there was no room for me and a walker. So, I attempted to walk out to the car with just the cane and that's when I fell. But all is well. I have my 200th million scraped up knee, but other than that, I'm just fine :) One thing I have stopped doing since my last post is drinking/eating aspartame. It's found in all diet drinks and basically anything with artifical sweetner. I had heard over the years what it could do to you, gotten all the e-mails and everything, but I never really paid attention to any of it. That is until my dad forwarded me an e-mail just a couple of weeks ago. I'm not sure what struck me about this particular e-mail, but it scared me enough to make me give up aspartame! It said that drinking/eating things with aspartame could lead to neurological effects. Then Dad went to the doctor and asked him about it and he said the same thing! That's all I needed. Whether that's the cause of all my problems (and I highly doubt it!) it's just another thing to take into consideration and anything that can help is welcomed! Another development to share (and I hope I'm not doing this prematurely) is I may be getting to go to the Mayo Clinic. OK, I just read that last statement and it made me laugh, because to me it sounded like I may be getting to go to Disney World or something! I guarentee Mayo is not going to be as fun. I had tried to get into Mayo years ago, but was denied because I wasn't an interesting enough case (those are my words, not theirs!) Anyway, good friends of the family - Mitch and Robin Klebig- work at Mayo and they visited for Easter. Robin was the one to bring it up. That if I wanted to go, she could get me in to see her or one of the doctors in her department and through that they could do an internal referral. She said lots of family members of doctors that work there do that. It would mean I would have to see someone in hemotalogy (that's Robin's department), I would have to travel to Minnesota, spend more money, have to see more doctors, have to WALK for more doctors :) but....I've always thought in my mind that Mayo would be the last stop. That doctors at Mayo would know the answers. I may be putting too much trust in the name of Mayo, but that's just been my mentality. Of course, I know the Ultimate Healer, but maybe he works through the doctors at Mayo. I e-mailed Robin this morning. I'm willing to try one more time. I really believe that Dr. Matthiessen has come up with the best diagnosis, but at the same time that was the 5th diagnosis with the 5th neurologist I have seen. I want to go to Mayo to either have those doctors confirm what Dr. Matthiessen has said or tell me exactly what's going on. We'll see. It's a long road still. There are many things to consider. And who knows if I will actually get in at Mayo, even with Robin's help? I'm just putting it all in God's hands and will let it all play out as He sees fit. Thank you for all those of you who pray for me, support me and love me. It's still a journey every day!
UPDATE-→ April 26, 2010

A lot has happened since my last update on the 8th. I’m going to Mayo!!! Robin e-mailed today and said that the doctor she works for was back in the office and she got a chance to talk with him about me and needless to say, I’m going to Mayo. I have waited for 5 years to do this and now it’s all happening so fast! I am going on May 3 and staying the week. That’s less than a week away! OK, so I’ll write more later…first I have to figure out whether I am going to drive (15 hours) or buy a plane ticket- so much to do, so little time!

UPDATE→ April 27, 2010

Decided to fly. Bought the plane ticket, super expensive, but hopefully super worth it. Only time will tell. Oh, and I’m writing these posts, but I’m not actually posting them, until I feel like it’s the right time. This has all come about so fast, and I just don’t want to put my foot in my mouth before things happen. So—I will write entries, but won’t actually post anything until AFTER the trip and until I know what’s going on.

UPDATE-→ May 2, 2010

I am absolutely terrified of flying, but I did it! Yay for me! And the plane DIDN’T crash and there were no terrorists on board and I landed SAFELY in Rochester, Minnesota- praise the Lord!! It was great seeing Mitch, Robin, Grant and Gayla. Robin was actually flying in from a conference in NYC. Boy, did she have a story to tell too. Supposedly there was a bomb threat in Times Square on Saturday night (not what I wanted to see flashing across the airport TV screen when in the Knoxville airport!!) and she and her nephew were there when it happened! I am so glad that they are OK and that all the people of New York City are OK. Mitch picked me up from the airport as I arrived 2 hours before Robin did. He took me by to see their church. We picked Grant and Gayla up from Sunday school. They were excited to see me as they had been prepped that I would be coming. Grant is 7 and Gayla is 5. Gayla kept asking when the other girl was coming and Mitch couldn’t figure out what she was talking about. Finally she said, “You know, Pastor Rich’s daughter.” I burst out laughing and said that I was sorry to disappoint, but I was Pastor Rich’s daughter! She then said, well what about the girl with the long blonde hair? Which confused Mitch and I even more, until Mitch realized who she was talking about. He said that he had showed Grant and Gayla the Easter picture that Mom and Dad had sent them and in that picture is not only me, but Stanton’s fiancĂ©, Aubrey- who has long blonde hair! I felt so bad to disappoint her that the girl with long blonde hair would not be coming and she was stuck with me! We then picked Robin up from the airport and headed home (well to their home, anyway!) Tonight, Robin and I went over everything. Robin had already put together a summary of my symptoms (I had been e-mailing her back and forth all week) and she wanted to go over it with me before actually getting in the office. So, I told my story again, we cleaned up some dates and events. I’m actually starting to get nervous now. I have no idea what to expect. Actually, I have prepared myself. I told myself that my main goal is not to come for a diagnosis or for Mayo, but just to enjoy the company of good friends and for a little vacation (ha! We’ll see how long that thought lasts!) OK, that thought has passed. I know deep down that what I really want is a diagnosis. But, just to prepare myself- I have no expectations. Seriously- no expectations. I don’t know what’s going to happen this week- I don’t really even know what appointments I will have, I just have to trust God that everything will work out for the best. Oh and another thing I found out today, my cousin Bethany and her husband Jerome welcomed their first child into the world- Emerson Marie!! Congratulations!!!

UPDATE-→ May 3, 2010

What a day!! That’s all I can say. Well, not really, I can say more…so here goes! First of all, I don’t know what I was expecting (oh right, I had no expectations!) but Mayo is nothing like I expected it to be. It’s actually very unassuming. In fact, Robin had to point out the famous Mayo sign that you always see on TV (see my pictures!) Robin and I got to Mayo bright and early at 7am as that’s when I was told to be there. She dropped me off at the entrance and kind of told me where to go. The first thing I noticed about Mayo was that it looked more like a hotel than a hospital/clinic/doctor’s offices. The only sign of it being a medical institution was the thousands (OK, maybe not quite that much!) of wheelchairs lined up at the entrance! There was marble everywhere and nice seating and it really reminded me of the Opryland Hotel if you want to know the truth! I headed directly for Admissions and Business Services. There was no line, so I walked right up. The lady behind the desk asked for my insurance card and literally within 5 minutes I was done. I waited for Robin to come in from parking the car and she was astounded that I was already done! She said that she had thought I would be there at least 20 minutes if not up to an hour. We headed up to her office. I guess I should say right now that the Mayo Clinic is kind of hard to explain in terms of buildings. All the buildings are connected. There’s the Mayo Building and the Gonda Building. Robin works in the Gonda building on the 10th floor in the hematology department. Robin’s an RN as well as a clinical nurse practitioner. So, we headed up to Gonda 10, where I checked in and was given a pretty hefty load of papers to fill out. They also asked for all of my medical records and any MRIs or CT scans that I had. They scanned everything into their computer and then gave me everything back. Robin went back to her office and told me to send her a text when I was done filling out the paper work. So I dug into it. There was paperwork on my insurance, on my symptoms, on my family history, on the medications I take- just about everything you could think of to ask a person, I filled it out in that paperwork. Then the most amazing thing happened. I had just finished the last word of the last page and a nurse called my name to go back!! How in the world did they know I was ready?! Robin told me that she thinks they actually have it timed out because other patients have commented on the same thing. Anyway, Gina was the nurse’s name and Robin said that she works very closely with her. Gina weighed me, measured how tall I was and took my blood pressure. Then Robin came in. She had tidied up the document that we were working on last night and read it to me. This would be what she sent to the neurologist for the consult. Then she did an exam. I thought it would be a lot more awkward to have a friend doing all the exams, but it so was not!! She was great. After the exam, she wanted me to meet Dr. Witzig (the doctor she works for), but she couldn’t find him, so she asked me to wait. I waited for a while and she came back in and told me he was in a meeting and wouldn’t be available until later. She wanted me to go down to the neurology department and see if I could get an earlier appointment with the neurologist there. Robin had actually gotten my initial consult with a neurologist set up for Wednesday morning, but this is the great thing about Mayo. You can be what they call a checker. If you have times between your appointments and are just hanging out at the Clinic, you can go and check to see if the doctor has an earlier appointment or a cancellation. So I went down to Neurology, which was in the Mayo Building on the 8th floor. I have to say right now that if nothing else, I love Mayo because of it’s directions ☺ If you know me well, you know that I am HORRIBLE with directions (and that’s an understatement!!) But Mayo- wow- the efficiency and the directions they give are awesome! All I really had to do was take the elevator and go down 2 floors. Outside the elevator to the right was the Mayo building and to the left was the Gonda building. Anyway, I found my way without any problems!! I checked in and they said that they would be checking their systems in a few minutes, if I wanted to wait. So, I did. Within 20 minutes or so, they called my name and said that they did indeed have an earlier appointment and that they could see me at 3:15 pm today!! I was stunned. Again the efficiency of the whole place was blowing me away and it wasn’t even 11:30am yet on the first day! I sent Robin a text to tell her that I did get an earlier appointment. And then she sent a text back saying that was great and wondering if I could come back up to her office as Dr. Witzig was there and she wanted me to meet him. I went back up and by the time I got there, (which was like less that 2 minutes!) he had already gone in to see a patient; so Robin decided that we would go to lunch. She took me to the Patient cafeteria down on the lobby level of the building. Even the cafeteria was amazing! I of course had my walker and as I was in line getting lunch a woman came up to me and asked if she could help with my tray. I found out that she was a volunteer there. She took my tray to the table and got my drink for me and then when lunch was over she came back and got everything. It was awesome!! I didn’t have to balance the tray while trying to hold on to the walker. There were volunteers everywhere, helping everyone in the cafeteria! It was great having lunch with Robin. Soon she had to go back to work though ☺ I went with her to check and see if Dr. Witzig was available again, but he is a very busy man! I waited in the waiting room for a while before Robin said that he wouldn’t be available for a while, so I headed back down to Mayo 8 and the neurology department. It was still a couple of hours before my appointment, but I had brought a work laptop with me and reading material, so I just sat in the waiting room and kept myself busy. The time flew by. Soon, they were calling my name to go back. I was informed that my neurologist, Dr. Andrew McKeon, had a resident following him and the nurse wanted to know if it was OK if she came and saw me first and then Dr. McKeon would be in. I, of course didn’t mind. Dr. Paula Aston was the name of the resident. She came in and for the second time today I gave my entire story (the first time was with Robin!) All of the medical records and notes, MRIs and all of the paperwork that I had filled out earlier this morning, were in the computer- another reason I am growing to love Mayo more and more. Every doctor that I see, will be able to see all of the notes from every other doctor and all of my medical records!! Dr. Aston wanted to hear my story from me though, so she took her own notes. She looked at my previous MRIs. Then she did a neurological exam. She noted that I have very high arches in my feet. I told her that my Mom does too and that’s when she mentioned that she thought I might have a genetic disorder called Charcot Tooth Disease. She was funny though because she quickly followed that with “watch, Dr. McKeon will come in here and say something totally different!” Her part of the exam took about an hour. Then she left and said that she would go get Dr. McKeon and that he would also want to examine me and talk with me. Dr. McKeon came in and basically did everything that Dr. Aston had just done. The part I hated the most was- you guessed it!- walking for him. He made me go out in the hallway and walk the length of it and he saw how very difficult it was for me. He asked (as had Dr. Aston earlier) if I could walk on my tippy toes or on my heels- I did that, although somewhat awkwardly. He asked if I could walk backwards. He said that sometimes when people have problems walking forwards, they can actually walk backwards just fine- well not me!! I had just as much difficulty walking backwards as forwards. He saw that I at one point stopped dead in my tracks mid gait and asked why I did that. I told him I had no clue, it was like my brain forgot what to do or like it was recalculating or something. He asked if I could run. He was serious. He wanted to see me run. I couldn’t. He asked if it would help if I held on to him and it didn’t. I cannot run at all. Period! As I was walking and Dr. McKeon was watching he asked where I was from. I said Tennessee. He must have detected an accent. I thought this was a little funny, because he had an accent. I thought it was British at first, but it turns out he is from Ireland! Finally he said I could stop walking for him!! I was very happy ☺ He then did the neurological exams. All of this took an hour or more. At the end of the appointment he disagreed with Dr. Aston. He said that he didn’t think I had a genetic disorder. He was thinking along the lines of dystonia. But he did want to rule out young onset Parkinson’s disease, any genetic disease and something called Wilson’s disease. In Wilson’s you have too much copper built up in your system. He ordered blood tests and asked that I get another MRI. He said he would see me back when all of these things were done. He also said that he was going to get with his colleagues in the neurology department and see what they had to say about everything; see if they had any other ideas. I was asked to go back to the waiting room and wait while they set everything up. I walked to the waiting room and Robin was sitting there waiting for me! She said she had asked if she could just go back with me, but the nurse said that I would be out in 2 minutes. We waited a few minutes and then the nurse came out with my appointments set for tomorrow. Blood drawing in the morning at 10:30am and MRI at 2:55pm- again, I can go and see if I can get in earlier at both places. I told Robin that the resident had one theory but the main neurologist had another and she said “You’re not going to stump the Mayo doctor’s are you?!” I sure hope not!! Robin and I walked back up to her office so that I could meet Dr. Witzig. Robin left me at her office and went real quick to pick up Gayla from nursery school before they closed at 6pm. She brought Gayla back with her to the office and then we all met Dr. Witzig. He is extremely kind and I understand now why Robin loves working for him so much! After a brief meeting with him, Robin, Gayla and I headed home stopping on the way at the grocery store to get some dinner. I had to start fasting at 7pm for my blood draw in the morning. The evening was fun though. We watched a DVD of a comedian named Tim Hawkins. Grant and Gayla make me laugh hysterically too. I am so glad that I have them to distract me at night from thinking about what I have to do in the morning. What a hugely eventful day I have had. Not at all what I expected but exactly what I needed. Day 1 is done…only 4 more to go!!

UPDATE--> May 4, 2010

Today started early once again, but not as early as yesterday! I went in with Robin again. It’s amazing what one day can do to a person. I had only spent one day at Mayo and this morning I felt like I knew where everything was! I immediately went to the place where my blood was going to be drawn. I was 2 ½ hours early! There was a HUGE line. I thought, maybe this was a mistake getting here this early, but again, I was super surprised- the line went really fast and before I knew it, I was getting checked in. The guy behind the counter said that it was not a problem that I was so early and that so far they were having about a 20 minute wait. I waited and was called back within 20 minutes. I have to say I have had better blood draws before. The nurse got the needle in my arm and the blood started to flow and then it just stopped. So she had to dig awhile and even typing this is making me woozy, so I’m going to stop. Needless to say, it wasn’t a pain free procedure! She took 6 vials of blood. But I was done giving blood by 8:30 am- a 2 whole hours before I was actually supposed to get it drawn!! That made me very happy! But I didn’t feel so good, so I grabbed something to eat- I did not want to faint (and I didn’t!) I then decided to go see if I could get my MRI moved up. It was actually located in the Methodist Hospital that’s a part of Mayo. I did need a little assistance in finding out how to get there, but soon found my way. Again, I could get to the hospital without having to go outside, but it was a pretty day, so I opted for the outside route. Unfortunately, they were swamped and it was only 9 am!! They said that they were doing good to get to the patients that were actually scheduled then and had no earlier appointments. That was OK. I took my time walking through the halls and back over to the Mayo building where I went back to the neurology department because I was supposed to pick up an updated itinerary. I guess I should explain now another thing that I love about Mayo. You are given an itinerary. It’s a list of all your appointments, where they are, what time they are for and any other pertinent information you need about the appointment (like if you have to fast, stop taking medications, be there early…) All your appointments stapled together and organized in one neat little packet! I got to Neurology a little early though and they didn’t quite have my itinerary done yet. So I sat in the waiting room and checked in at work on the laptop. Before long the itinerary was ready and I found out that Dr. McKeon wants me to see a physical medicine and rehabilitation doctor tomorrow and that he set up my return appointment with him for Thursday. Also I have an appointment with the Movement Disorders Lab which they couldn’t set up until May 18 (when I’m not going to be here!) but I can be a checker every day and hopefully get in earlier! I actually went and checked on this appointment right away and they said that as of now that was the earliest appointment they had. I went and had lunch with Mitch. I’ll take the time now to say that they bottom level of Mayo is the level that they call the “subway”. There’s no actual subway, but this level of the building is what connects all the Mayo buildings together without having to walk outside. It’s also like a mall. There are all kinds of shops and all kinds of places to eat. Mitch and I had lunch in the subway. Mitch has his PhD and works at Mayo doing research on how to cure cancer. I found it very fascinating stuff as he’s working with zebra fish and doing all kinds of cool research! After lunch, Mitch went back to work and I decided to do a little more exploring of the subway because I still had time before my MRI. So I looked around in some of the shops and passed the time away. I then headed over for the MRI. I guess there was a little confusion. The MRI techs noticed that I have a shunt. They said that their normal policy is to get an X-Ray before the MRI and then one after to make sure the shunt does not move (the shunt has a magnet that regulates it and the magnets in the MRI tend to mess with it) I told them that my shunt was non-functioning; that it had been turned off, but as the MRI tech put it, this is Mayo and we do everything a certain way. So needless to say, I got a wheelchair escort down to the X-Ray. It was nice though because I didn’t have to wait for the X-Ray and I didn’t have to walk!! Also, the nurse gave me this heated blanket- I’m telling you, it’s the little things in life that make me happy. The nurse who escorted me down was very sweet. She has lived in Rochester all her life and thought it cool that I had a southern accent! The X-Ray tech was very sweet too. He gave me the royal treatment and hooked me up with another blanket for the ride back upstairs after the X-Ray. The MRI tech gave me earplugs to put in and asked if I knew how to put them in. I told her, that after all the MRI’s I’ve had that I should know how to put them in, but I couldn’t remember! Oh well, I guess there are some things I’ll never learn! I’m pretty sure for the first time that the MRI itself wasn’t as scary to me as it has been in the past and I actually marveled at how used to it I have gotten. I actually almost fell asleep in it! Seriously, the whir of the machine starts to sound rhythmic after awhile and I would start drifting off only to be woken up by the MRI tech who would say that they next scan would last 5 minutes or 1 minute or however long. They say that it’s actually bad to fall asleep in the MRI because you could sub-consciously move. I think I have more of a problem consciously moving! And was so glad that they were not MRIing my foot and/or leg, because it was constantly jerking. After the MRI it was around 5pm, so I went back up to Robin’s office and waited in the waiting room. Dad called during this time and I spoke with him. He said that a ton of people were asking about me and wanted to know what was going on. I told him I had no news yet and that’s what he could tell everybody. Almost immediately after I got off the phone with Dad, Robin sent me a text saying she was talking to Dr. Witzig about getting my Movement Disorders Lab appointment moved up. As of tonight the plan is to go in tomorrow and have someone from the hematology department call down to the Movement Disorders Lab and see if they can rearrange the schedule. Fingers crossed that it all works out! Oh, and tomorrow, since I don’t have any set appointments until the afternoon when I see the Physical Medicine and Rehabilitation doctor (I had also tried to get this moved up too, but they said that they needed my MRIs done before getting an earlier appointment) I’m staying at Mitch and Robin’s house until lunch. Then Robin will come and get me for my appointment. Yay!! I get to sleep in some!

UPDATE--> May 5, 2010

I can’t believe that I have already been here 3 days now. The time truly is flying by! I am so glad that I got to sleep in this morning. You can’t imagine how exhausting all of this has been unless you’ve done it yourself. It’s not so much that it’s hard to do or even that it’s stressful. I’m not sure exactly what it is, but at the end of each day, I fall asleep as soon as my head touches the pillow. Today I saw the physical medicine and rehabilitation doctor. I was sort of right in my guess that this was kind of like a physical therapist. Basically she told me told me everything I had already known. But it was still good to see her and get her opinions on things. She even suggested that I would come back to Mayo and tell them (the doctors) what worked for me and what didn’t and what they should do for other patients. I thought to myself that I thought that was what she was supposed to do (tell me what to do to get better!) but as in all fields of medicine, I’m learning, everything is trial and error- some things work, some don’t. But I so want concrete answers!! Ugh! After my appointment (all my appointments seem to take at least 2 hours) it was about time to go home. I went back up to Robin’s office and we left. I had many questions when we got home tonight. I had a pretty emotional night tonight. Everything is catching up to me: knowing I see Dr. McKeon tomorrow, stress, little sleep. Robin and I sat and talked a long time. She asked what I was afraid of most. To be honest, I said it was dying. I know we all die someday, but I don’t want to die now. I am also most afraid of not knowing what’s going on with me. She asked how I would react/ feel if I was told that it was dystonia. Honestly, I don’t want dystonia. I don’t want something fatal, but I don’t want dystonia either. I really don’t know what I want anymore. I just want it to go away. Please God let it go away! I am going to have major bags under my eyes tomorrow due to the hour we stayed up talking, getting up early and crying all night long. This has been a very emotional day and I’m not quite sure why. Tomorrow’s another day, with other appointments…we shall soon see how they go.

UPDATE--> May 6, 2010

God surprised me once again today. Whereas last night, I was miserable today turned out amazingly well. I was going to spend the morning again at the Klebig’s house as my return appointment to Dr. McKeon was not until 3:45 this afternoon, but Robin asked me last night (in the midst of my meltdown) whether I would like to see a psychiatrist. She said that she thought it would be good for me; that he or she would be able to help me deal with whatever diagnosis I got. I agreed to it- I mean I was there and had nothing better to do! Although, I did wonder, who goes all the way to Mayo to see a psychiatrist? But I wouldn’t think about that, I would just go. Robin called me at about 9am and said that it was amazing but I could be seen at 10:45 am. Robin was already at work, but Mitch was still around, so he drove me in. I saw Dr. Rasmussen. I was trying to guess where he was from (so far my neurologist was from Ireland and my physical medicine and rehabilitation doctor was fromTurkey!) only to find out he was American born and bred and a SOUTHERN American at that from Atlanta, GA. Anyway, I felt like I did most of the talking (which I guess I was supposed to do!) He did ask his questions though and at the end didn’t think I needed any medication or anything. He did suggest that maybe I start cognitive or behavioral therapy to deal with my panic attacks. He said he would let my doctor in Tennessee take the lead on it. He said that my emotional state today (and last night) was strictly due to the fact that I don’t have an answer yet. He asked the same thing Robin did the night before. What will I do when I get the diagnosis? I told him, whatever it is, I’ll just have to deal with it. That’s all I can do right?! He agreed. And then he did something quite interesting to me. He said that I had come to the right place for a neurological diagnosis. He said that the neurological department here at Mayo is the best in the world and that they will be able to help me. I thought this quite interesting because he wasn’t a neurologist and is not in the neurology department. From what I’ve seen over the years, doctors try to build up their department and take down other doctor’s departments. He was actually giving a compliment to another department, another doctor!! And at the same time, basically saying that I didn’t need him as much as I needed the neurologist. My admiration for him went sky high. Anyway, I left feeling better about the whole situation. And God seems to know when I need to put things in perspective. As I waited in the hematology waiting room (waiting for Robin- she and I were going to go to lunch) there was a woman talking on her cell phone telling whomever was on the other line that the doctors hadn’t given up, but that they suggested that her daughter move up her wedding, if she wanted her father to attend. Sobering. Here I was so emotional about my ordeal, but at least at this point I know it’s nothing fatal. This woman could possibly lose her husband in less than a year. As much as she was hurting right then, God knew that I needed to here what she was saying (and she didn’t seem to mind that others were around her and that they were possibly hearing her conversation). It puts everything in perspective. Robin and I had lunch and I told her all about the appointment and how grateful I was to her for setting it up. I also told her about the woman in the waiting room. Then she told me she had gotten my Movement Disorders Lab appointment moved up! How she did that, I’ll never know but I am so very grateful!! I’m going tomorrow at 8am!! Again, I was super grateful for all she had done for me! After lunch, I logged onto the laptop and checked some work things and before I knew it, it was time to see Dr. McKeon again. Just before going back, Robin sent me a text and asked if I knew a Dave McGinley. I sent her a text back and said yes, he is our youth director at church. I wonder what that could be about! I was actually kind of scared about this appointment with Dr. McKeon- I knew this was it. Years of wondering what was going on with my body, years of searching for an answer all lead up to this. In fact, the entire time I was in the waiting room, I was bracing myself for what he would say or what he wouldn’t say. After my morning and the waiting room lady, I forced myself to be content with the fact that it might be dystonia. Then the nurse called me back. I saw Dr. Aston first. She said that she was skeptical at first about my diagnosis, but then, when given the facts, knew it was dead on. As she was talking to me, Dr. McKeon came in the room. I really can’t remember exactly what they said, but I do remember the diagnosis! I have what’s called adult onset hemidystonia. Yes, it’s a dystonia. Dystonia- I thought I would crumble and yet once he told me what it was, it was like this huge weight was lifted off of me. I was stunned by my own reaction! It must have been all the prayers. Shall I dare say that I even felt at peace?! Maybe not quite, but I was a lot calmer than I thought I would be! What Dr. Aston was skeptical about was this: in adult onset hemidystonia, there is some kind of brain trauma that happened either before I was born, when I was born or shortly after I was born, but it doesn’t show any sign or symptom until years later sometimes 30, 40 and even 50 years later. How could I have had brain trauma at birth and not show any symptoms until years later? She was skeptical until Dr. McKeon dug up a report of a study done at Baylor University in Texas. A doctor there (they told me his name and it’s in their notes, but all my medical files are being sent within the next week to me and I’ll have it then and I don’t remember his name off the top of my head!) followed 52 patients that were known to have had some kind of brain trauma at birth. He followed them and looked for signs and symptoms and none showed up until 30, 40, 50 years later and then they all eventually got symptoms. I was pretty amazed by this myself! Dr. McKeon said he was absolutely 100 % sure that I had this. He said that it is also pretty rare. He said that mine is hemi because it affects the entire left side of my body. It’s not just my leg and foot that give me problems. It’s not as noticeable, but my arm and hand are affected too. I notice this when I try to flex my muscle in my left arm (I can’t). When I try to grab a hold of something heavy (my hand just gives out). I basically have as much control over my left arm/hand as I do my left leg and foot, it’s just not as noticeable because I don’t use them to walk on. I’ve also seen a little of it on the left side of my face- muscles twitching, that sort of thing. Now all is explained! As for treatments, Dr. McKeon said that it can be tricky. I can get Botox (a different strand, one that I don’t have an antibody towards). I can also take drugs. He wrote me a prescription for a Parkinson’s medication called Levadopa. He said that if this medicine works it’ll be like a miracle drug for me. I’ll know pretty much instantly! But just in case that drug didn’t work, he also gave me a prescription for another drug called Artane. I asked if I could take all this medicine together and he said that I could, but he doesn’t want me to. He said that when I go to the Movement Disorders Lab appointment in the morning they would be able to tell me if they were going to inject Botox. If they do, I am to wait and see if the Botox works. If it doesn’t, then I can start taking the Levadopa. I would start at the lowest dose and if need be increase to the highest dose: 3 pills a day 3 times a day. If the Levadopa does not work, then I can start taking the Artane. He wants to do everything separately at first so if one thing does work, we’ll know which thing that is. Sounds like a plan to me. I left Dr. McKeon’s office with 2 prescriptions, his card and a sense of accomplishment. I had gotten what I came to Mayo to get! I am still surprised though at my reaction. I am actually happy! How could I be the same girl that was balling my eyes out last night?! I don’t know what is going on with my emotions, but I am very happy that at least for the time being, I am happy! I met Robin after my appointment and asked her how she knew Dave McGinley. She doesn’t know him, but her church’s youth group is going on a trip in June and they contacted Dave to see about staying at our church. I told Robin, after all she had done for me, I would make sure that the youth could stay at the church! She asked if I wanted to go to church with her tonight for praise team practice and meet the people she sings with, one of which is the same person who set up the youth trip. I couldn’t think of anything I would rather do then listen to her practice, so I went with her. Robin has an amazing voice. And hearing her made me miss her all that much more because she used to sing in the praise team at my church! It was great meeting all the people she goes to church with though and I had a wonderful night. This day turned into so much more than I ever expected, but again, I did come in with no expectations! I’m exhausted, and yet I’m relieved and satisfied. Yes- that’s the word- I’m satisfied. All these years I’ve been searching and now I feel like I have gotten the true answer- thank you Jesus! One more appointment tomorrow and then my Mayo Clinic experience will be over with.

UPDATE--> May 7, 2010

I am actually quite surprised that I am still happy today! I thought after the roller coaster of emotions I’ve had that I would wake up today and be sad all over again, but today turned out to be a happy day. I woke up bright and early to get to my Movement Disorders Lab appointment at 8am. They took me back and sat me in a chair. Then 3 neurologists (one was the main neurologist and 2 were residents) came in and wanted me to just let my foot and leg do what they do. Finally!! No one was asking me to walk perfectly. They wanted to see just how bad everything is! So they stood and watched for a long time my leg and foot do what it does best. They asked me to do certain things, move certain ways. Then they said that they were going to go plan their course of action and would be back in a few minutes. They returned and said that Botox it was. I reminded them that I had an antibody towards Botox and they said that they would not be injecting me with Botox A but instead with Botox B (basically a different strand). So the neurologist watched as his residents set me up for it. The one resident said to the other, “I’m going to need the longest needle you have in there.” If my muscles weren’t tense before that, they definitely were after she said that! So the other resident, brings out this HUGE needle and they tell me, it’s going to hurt because they have to go deep in the muscle. Thanks a lot!! As the neurologist was giving orders to one of the residents, the other resident was holding the needle. She then gave the needle to the neurologist and said “here, why don’t you hold this until (the other resident is ready) and I’m going to go hold her (my) hand for moral support!” I couldn’t believe she was just going to hold my hand for moral support!! I was already really nervous though (if you can believe this, the bottom of my foot was sweating I was so nervous!) and I guess she could sense it. So, the neurologist stood at my feet and the resident started injecting the needle. Then the neurologist told me to flex my muscle by pushing down on his hands. This is when it started to really hurt. I was hooked up to this monitoring system too and we could hear the nerves and muscles contracting. Then it started to burn a little bit. But eventually it was all over with. I got two injections. If this works, I would get injections every 3 months. They said that I should see peak performance within 2 weeks. If I don’t see anything after 2 weeks then I could start taking the medication if I wanted to. The resident said that I would probably be sore for a few days because they went so deep into muscle and my muscle was so tight. The whole appointment took about an hour. So it was only 9am when I was done. And I was done with everything!! I didn’t have to go see Dr. McKeon again or anything. So I decided to go exploring. I had all day to spend at Mayo until Robin was done with work. One of the first things I did was go to Barnes and Nobel, which is one of the stores at Mayo. I was actually looking for a Mother’s Day gift for Mom, but stumbled upon the diseases section of books. I wasn’t sure at all if they would have anything on dystonia, but decided it was worth a look. I found one copy of one book!! I bought it. It’s called “Living Well with Dystonia”. And what I’ve read so far in it today is me. Grant it, I’ve only read 5 pages (but that doesn’t include the preface and the acknowledgments both of which I got great info out of too) but everything they have said so far I’ve experienced. They even said that most people with dystonia will go on average to 14 different doctors before getting the correct diagnosis. I felt super good about myself after reading that!! I have only been to 6! And now I know, I’m not crazy!! I also ended up getting another book, “The Doctors Mayo” because I want to learn all I can about these Mayo brothers who laid the foundation for such a place as the Mayo Clinic. I then toured Mayo. I went to the Mayo Museum, I took pictures of everything, I stopped and listened to the piano player in the lobby and then stopped again later to hear the singer who was now with the piano player, I went back up to the neurology department and took some pictures, I even took pictures of the elevator, because they have this cool computer screen in it that tells you exactly what’s on each floor. I’ve posted the pictures I took. I had an overwhelming sense of accomplishment, relief, gratitude and amazement today. I am so blessed that I got the opportunity to come here to Mayo. I am blessed that there are people like those that work at Mayo who devote their lives to finding out what’s wrong with you. Robin told me that the logo for Mayo is three shields (I took a picture of it too). They stand for Patient Care, Research and Education. I truly experienced exactly that. I am just filled with gratitude. That’s all I can say. It’s definitely not going to be an easy road. As the dystonia book said, this is a life altering diagnosis. They also said that gathering information is the first step in managing any chronic illness. This isn’t going to go away. But now, I can shift my focus from “What is it?” to “What can I do about it?”

UPDATE--> May 8, 2010

It’s Saturday and no doctor’s appointments, no Mayo in general! I went to Gayla’s dance practice. Then Robin and I decided to make the 1-hour trip to Minneapolis and go to the Mall of America!! I mean, when in Minnesota, one must do this, right?! And a little retail therapy never hurt anyone! Oh and I forgot to mention, last night and today still there were snow flurries!! It’s May- that is not supposed to happen!!! And Dad and Mom both called on Friday and said that it was 90 in Knoxville. I was freezing and they were burning up! Anyway, shopping at Mall of America was awesome. I got some gifts. I definitely got Mom a Mother’s Day gift and I took pictures of the roller coaster inside! Great day, all around and a perfect ending to a pretty perfect week.

UPDATE--> May 9, 2010

Today the emotions were back- dang it! I knew they would be eventually, but still. I made it safely home and had a Mother’s Day celebration with Mom. But what I realized today was something I had not realized while I was at Mayo. The Mayo Clinic was my bubble for a week. It was my safe place. I say this because I actually felt comfortable there. And I was comfortable there because of this: everyone there was in the same boat that I was in. We were all searching for answers, there was something that needed to be diagnosed in all of us. People there didn’t stare at me because I was using a walker. Using a walker there was normal. People used walkers, wheelchairs, canes and crutches all over the place to get around. It wasn’t unusual. I felt normal there. Now, I know that I cannot live at Mayo!! And I wouldn’t want to. But for that week, I felt the weight of the outside world lifted. As strange as this may seem, I’m actually glad that I went by myself too. I had Mitch, Robin, Grant and Gayla there, but other than that I was on my own. I learned a lot about myself this past week. I was actually sad when I left. And when I got home, it just hit me that I have to live in the real world, with a real problem. I think the stress (or whatever you want to call it!) of the past years caught up with me. I am exhausted physically and emotionally. I think its just time to go to bed. Tomorrow’s a new day.

UPDATE--> May 14, 2010

I am finally posting all of my entries from last week. This week has actually been a roller coaster of emotions for me. Everything’s starting to sink in. It’s been one week since my Botox injection and I don’t feel any different. In fact, since Wednesday, my walking has been pretty much horrible. But that’s OK. I know it will come and go. And, I still have one more week to see if the Botox will work! And, if not, there is always the medication. Oh and another thing I learned from my dystonia book: sometimes botox and oral medication may need to be taken at the same time for optimum results. We shall see!

UPDATE--> June 20, 2010

Since my last update, much has happened. The Botox did not seem to be working, so I started the Carbidopa/Levadopa combo medicine. I have to take it three times a day an hour before I eat. That's been an adjustment to get used to. The funny thing is, once I take it it makes me NOT want to eat anything. I constantly feel nauseous. But I'm trying to look on the bright side- maybe I'll lose some weight (OK, who am I kidding, I hope I lose LOTS of weight!!) And the best part about taking this medicine is, I am starting to see a flicker of difference. I say flicker, because it's not like I started taking the medicine and the next morning I could walk just fine- far from that! I have good days and then I have bad days when it doesn't seem like the medicine is working at all. But within the past week or so, I've seen some changes. I can get around a little easier. This isn't to say that I've stopped using the walker or the cane, but- here's an example: Mom, Dad, Steven and I were at a Cracker Barrel the other day. We were leaving when Dad said, do you think you can walk to the car by yourself? Well, I at least wanted to try. By "by yourself" he actually meant, using the cane but not the walker (which was in the car anyway!), not holding on to him or parked cars or anything else I could use to steady myself. So I tried and I did it! Not without difficulty, but I didn't fall and I didn't have to hang on to him. Another big accomplishment was that I was a bridesmaid in Stanton and Aubrey's wedding. I'm not sure if they did this just for me, but they had the groomsmen walk in with the bridesmaids. So, Steven (my brother) walked with me. And it all worked out. I would really like to get to a point where all I have to use is the cane. That seems so strange saying that I'd be happy with just having to use a cane! But at this point, I would be! I don't like using the walker- it's not fun to say the least! But at the same time, I'm glad I have it and I'm glad I'm able to get around by myself with it. I do have lots to be thankful for! Now I just need to gain more confidence in my walking. But, I'm still blessed, that's all there is to it!

UPDATE---> June 28, 2010

I had a return appointment with Dr. Matthiessen today and I have to say it went really well! First, no crying from me. I MUST be growing up :-) Or accepting the whole thing, or I was just in a good mood! I'm not sure why this whole experience (the past 5 years or so) has been so emotional for me, but it has been. I can now cry at the drop of a hat (OK, I'll admit- that really happened before all this started too!) I do have to say this though- it really, really, really helps to have an awesome doctor. I'm blessed for sure. Dr. Matthiessen is the BEST!! So in this appointment, we talked about taking the shunt out (since I don't need it!) but Dr. Matthiessen's recommendation was if it isn't bothering me, I should just leave it in. I agreed. I don't really want it in me, but it's not bothering anything and like I told him, my hair is all grown back in now! (I know, sometimes, I am that vain!) So- the consensus was for the time being to leave it in. Then I told him all about my trip to Mayo. I don't know why I thought he would be mad that I went, but he wasn't! Then he discussed the medicine that the Mayo doctors put me on. I told him that I thought I had seen a slight improvement and he stated that that was awesome. Then I told him I had been playing with the doses (as the doctors at mayo had told me too!). I had been taking four and half pills a day (that's one and half pills 3 times a day) and that's when I saw the improvement, but then I realized that I would run out of medication before I could get it filled again, so I dropped back down to 3 pills a day. He said that I should definitely go back up to one and a half pills three times a day and he would write me a new prescription. He asked about side effects. I told him I was nauseous 24/7 and he said that was very common. He also said that was treatable- yay!! But I am so glad that I did not follow (well intentioned!) friends instructions to take something to combat that, because he said that I should absolutely NOT take any over the counter medicine used to decrease nauseousness. The reason being is that most of that medication lowers the dopamine in your brain, thereby rendering the medication I am taking useless (because it is increasing the dopamine in my brain) He said that the carbidopa in the Carbidopa/Levadopa combo that I am taking (called Sinemet) is actually the medicine that combats the nauseousness that I feel from the Levadopa. I didn't know that! Maybe the doctors at Mayo told me that, but I really don't remember them saying anything about it. Anyway, he gave me a separate prescription for more carbidopa. He said that just increasing the Sinemet would not help because it would still be the same ratio Carbidopa to Levadopa. He said that he would monitor how I react to the medicine and if need be add Artane (the 2nd prescription that the Mayo doctors said I could take) to the mix later on down the road. He also asked me if I had had other side effects. The other side effects that I have are sleepiness and dry mouth, but both are pretty manageable. I even told him, I would take being nauseous all day if it meant I could walk! And I really mean that! He sort of scared me a little bit though because he asked if I had had any hallucinations. He said that could be a side effect. Thank the Lord, I haven't had any of those at all! But again, I guess he's going to be looking for that or any other side effects that I have. I asked about physical therapy and he said that he wanted me to continue with it. Which means after a 6 month break, I get to see my friend Kristal again on Wednesday at Marino Therapy! Dr. Matthiessen said that I should be all means use the walker whenever I need it for however long I need it. I told him I had a love/hate relationship with it. He understood. I told him I get embarrassed having to use it. He understood. That's what I love about him! He really does understand that if I could, I would throw that walker to the side and use my own two feet. But, I'm working on not being embarrassed by it. It's all part of the accepting process. It was a really good appointment. I have to say though, that I did think back to the very first time I heard the word neurologist (as in I have to go see one!) I freaked out! And now, it's no big deal to think I have an appointment with the neurologist! Oh how one can grow in a 5 year time span. I don't even bat an eye at what freaked me out back then. Kind of scary and kind of cool all at the same time.

UPDATE--> July 15, 2010

I started physical therapy again on June 30. I have Kristal as my therapist again, which I am very happy about. But this time around, I had to open my big mouth! I told her that walking on the treadmill just wasn't cutting it! I can walk fine in place and with handle bars to grab a hold of, it's walking from point A to point B that I have problems with. Well, she fixed that! She's now got me walking the Marino Therapy parking lot. Lovely! I wistfully said to her the other day, that "normal" people have no problems walking on a (relatively) flat parking lot. It's hard, at times like that, not to think about what I used to be able to do. There was a time in my life that I wouldn't give walking across a parking lot a second thought. Heck, I wouldn't even give running across a parking lot a second thought and here I am today just praying that I can walk the few steps I need to to grab a hold of the walker that she has pushed out in front of me. That's how we started. Kristal would walk in front of me and push my walker with her. Then I would have to walk to the walker. I know it's no big deal for probably every single person who's reading this right now, but it really took every last brain cell I had to accomplish that without falling. Oh, I should also mention the reason we are walking in the parking lot is because I opened my big mouth again and told Kristal that I have a tendency to grab ahold of things to steady myself. So- she wants me to learn to walk without grabbing a hold of anything and at 7 am there are no cars and no one in the parking lot- therefore that's where we do my therapy :) After 2 or 3 sessions, I finally got up the nerve to actually walk into physical therapy with just my cane and without the walker. So then we started walking around the parking lot without the walker- even scarier! Kristal did also get me back on the treadmill though just so that I could get the motion of walking down. I don't always walk in a fluid motion. I stop and start again with the same leg (this is hard to explain!) so she wants me to start getting the feeling of walking in motion again- one foot in front of the other. And just on Wednesday we found something else to work on. We were outside walking again when I had to step down from this curb. OK, actually that's a huge overstatement! It wasn't even a curb. It was a slight elevation- almost like walking over a door frame or onto a different surface. It was that slight- and yet I couldn't do it without great difficulty. I wanted to step down with my right foot (the good foot!). But Kristal wanted me to step down with my left. In theory, this seemed easy enough. In actuality, it was the hardest thing I did that day and hands down the most frustrating thing to accomplish that day. My foot either kept turning in or collapsing or would have a spasm. I so wanted to be able to conquer that task, but it didn't really happen. I kept wanting to try it over and over. Kristal said she was impressed that I wanted to keep trying it. I'm nothing, if I'm not stubborn! But as doctor after doctor has told me "Rome was not built in a day". I did get down a couple of times, but not like I wanted to. I eventually had to stop trying because my session was over. It's just another thing I have to train my brain to do again. Walking, steps...I'm exhausted after each therapy session, but it's a good exhaustion. It's one of accomplishment for the most part. As long as I keep moving forward and don't take 2 steps back...I'm good with that :)

UPDATE---> September 3, 2010

It's the simple things in life that make me happy. And right now as I type this, I'm sitting at my computer with my hair in a ponytail. Ah- yes a ponytail- I love it!! It's the simple things! So, I haven't updated this in awhile. There really hasn't been that much to update on. I'm starting to find new ways to do things and live with this condition. I am still continuing with physical therapy although as of this week, I've cut back to going only once a week. Not that I've gotten so much better, but by going once a week it gives me more insurance approved times that I can go this year. And it really doesn't seem to matter whether I go three times a week or once a week. It's one of things where I take two steps forward, one step back. I can never truly see a huge, monumental, earth shaking difference no matter how many times I go a week. It can be frustrating at times, but most of the time now, I just accept it for what it's worth. I've been doing a lot of research on dystonia. I like learning all I can about it and ways to deal with it. I've become fascinated with the human brain. Actually, I've been fascinated with it ever since my whole journey began. I love reading articles and researching new treatment. One thing I had not mentioned in my previous postings was the option of deep brain stimulation (DBS). The reason being is I thought I would never ever want to do it. But both the doctors at Mayo and Dr. Matthiessen have mentioned it to me. I still really haven't even wanted to go there. Just the words deep brain stimulation scare me. But, over the months I've done some research and talked with some people and well lets just say it's an option now in my mind. I'm not saying that I'm going to get it done, but it is an option and options are always a good thing to have! For the time being however, I am still taking the more conservative road. That means I'm still taking the medication that I started in May. But where I once thought that maybe I would lose some weight being nauseous all the time, now I just don't want to be nauseous all the time! I think I've actually gained weight since taking the medicine, for as strange as it may seem, I feel better when I do finally get to eat something. It's really kind of sad, because I don't remember what it's like NOT to feel nauseous all the time. The same goes for my walking. I really don't remember what it feels like to just be able to walk without problems. And the medicine that Dr. Matthiessen gave me to combat the nauseousness, well, lets just say, I'm kind of wondering if it makes me more nauseous sometimes. One of the first times I took it, it didn't stay down. It's gotten a little better though and maybe that's the key- time- but I still don't feel good most of the time. I have another appointment with Dr. Matthiessen in a month, so we'll see what he says. He may adjust it. There is also another medication I could take. I'll just have to talk it over with him. I'm also going to start looking into water therapy. I talked it over with Kristal (my physical therapist). She said that it may not help with the actual dystonia, but exercise is always good- especially for the heart. The reason it may not help with the dystonia is that my problems occur trying to bear weight. It's hard to explain, but water is very easy for me to get around in. I love the pool and the ocean because I feel free again! The problem comes when I have to do things (like walk!) outside of water. So, we'll see. It's another option. I think that's about it for now. I'll update again when there's more to tell.

UPDATE---> November 13, 2010

Well, it's the middle (or almost the middle!) of November and I haven't updated since the very beginning of September, so I thought I'd update now. So since last updating, I did water therapy at physical therapy. I have to say, it actually was a lot of fun...OK, maybe that's not the word for it, but it was freeing- yes that's the word- freeing!! I felt like I could do anything in the water. Funny how going from land to water makes everything seem so much easier! I joked with my physical therapist that if a pool of water could follow me everywhere I went, I'd be able to walk perfectly :-) It is truly amazing though how I can walk "perfectly" in water and hardly at all on solid ground. I put perfectly in quotations, because in all reality, I wasn't walking any better than I do on dry land, the only difference was if I tripped or fell, it was in water and I was perfectly fine (thanks to those swimming lessons I took in kindergarten!!) I also went back and saw Dr. Matthiessen. It was a rather quick appointment this time. We decided I would stay on the Sinemet, but he look me off the Lodosyn because it was actually making me sicker than before. The Lodosyn was supposed to combat the nauseousness caused by the Sinemet, but in reality that was the only time I've ever thrown-up with any of these medicines. So, Dr. Matthiessen thought that maybe my stomach had gotten used to the Sinemet and I didn't need the Lodosyn and in fact, I think he was right. I feel much better. However, there has been a new development. Not sure if it has anything to do with the dystonia or not, but at the very end of August/very beginning of September I started having massive stomach pains. Not like an upset stomach- like actually stabbing pain. I let it go until the end of September because I am a girl and I thought it could be just girl issues if you get my drift, but when it didn't go away, I went to see my family doctor. I told him all about the pain and then mentioned that I had these strange purple marks all over my stomach that just appeared from one day to the next. So he examined me and immediately said I had to be tested for Cushing's disease. I'm sitting there in his office and actually, I kind of start to laugh. I'm not sure I laughed out loud, but internally I was laughing. It was not one of those happy go lucky laughs it was one of those, you have got to be kidding me laughs. I thought I had just gotten through all my medical mysteries and was on the other side and now he's telling me I could have another rare condition. And he goes on to say that Cushing's is caused by either a tumor on your adrenal gland or your pituitary gland. Well, with all my medical research about other things you would have thought I would have known where those glands were, but I didn't. I got lots of blood work done and a CT scan and I went to my girl doctor just to make sure it wasn't cancer or anything and then returned to Dr. Rankin. The blood work came back saying my cortisol levels were elevated which is a sign of Cushing's, but the CT scan showed no tumors in my adrenal glands (which I learned are right above your kidneys). Which meant it was probably in my pituitary gland. At this point, I didn't care if I looked dumb, but I asked where the pituitary gland was and Dr. Rankin said in the brain. Of course, it's in the brain! I should have known that :-) He wanted to get some more blood work done and I just wanted a quick and easy answer, but of course that doesn't happen with me! It turns out the next blood work he did showed that my cortisol levels were within the normal range, but what was abnormal was that my cortisol levels were low in the morning and high in the evening and normal is the complete opposite of that. As he explained to physician's assistant, Dr. Rankin said I can never come see him for something simple or easy to fix, it always has to be a big deal! He ended up sending me to an endocrinologist who did all the blood work and tests and to make a long story short the result was I didn't have Cushing's. That's the good news! The bad news is I still don't know what's causing the stomach pain. It's not stress as the endocrinologist suggested. I know it's not. So...maybe it's irritable bowel syndrome. That's what I'm being treated for now. But it seems like everyone in the family has an idea as to what I have. Everything from endometriosis, to leaky gut syndrome (and let me tell you- if I have this NO ONE is going to be told that by me!! That's just embarrassing- can't they come up with a better name?!?!) to appendicitis. And then just today I found something else on the Internet that sounds like it could possibly be me- something called porphyria. But I'm not a doctor and no one in my family is (well at least not yet, Stanton will be soon, but this is also the brother who told me that Cushing's used to be fatal!! So much for comforting....I'm just teasing you Stanton, I really do love you!) So we'll see...again, it may be nothing (or stress!), but for some reason I have a feeling everything is connected in one way or another. But on a positive note for the past few days (OK maybe a week now) I have been walking pretty good!! So, I'll take what I can get! I'm enjoying the time I do have that I can walk pretty good and I'm- as alway- very, very, very blessed!

UPDATE--> November 23, 2010

Just came across this in my Bible reading and had to share it:

Psalm 138: 8

" The Lord will work out his plans for my life- for your faithful love, O Lord, endures forever. Don't abandon me, for you made me."

In my Bible's notes it states this: " Every person dreams and makes plans for the future. Then they work hard to see those dreams and plans come true. But to make the most of life, we must include God's plan in our plans. He alone knows what is best for us; he alone can fulfill his purpose for us. As you make plans and dream dreams, talk with God about them."

UPDATE--> December 31, 2010

I haven't updated in awhile and now it's the last day of the year, so here's a little catch up of what's been going on. I don't have Cushing's as mentioned in an earlier post. So that's a sigh of relief! But my walking has not been all that good in December. The only difference this time is that I know, eventually, it will get a little better. My walking now has stages. I seem to "stage" everything. There are stages to my panic attacks and now there seem to be stages with my walking. I'm in the stage now where I can't really even walk with the walker and not have problems. I'm relying on that walker for every move. Oh, wow- it has been awhile since I updated this. Sad news- Foster Piciacchia, the man who gave me my walker and my first cane, died on November 27. I miss him a ton, but also know that he is in Heaven and in no more pain, so that makes me happy. I am so ever grateful to him for giving me that walker. I have a horrible love/hate relationship with it, but I am so ever grateful for it. Never in a million years would I have guessed that I would be ending the year 2010 unable to walk right and having to use a walker and/or cane all the time. But when I start to feel sorry for myself, I remind myself that it could be a lot worse! I truly am very blessed. It's very frustrating though. I just went to my internist and he could see how frustrated I was. He also mentioned something else that I thought quite interesting. He said that there can be good stress. I've never heard that before! What he meant though was that even though I wasn't feeling stressed in the way we all think of stress, I was still overly excited about Christmas and all the activities and that in turn becomes good stress- so maybe that's why I haven't been walking so well. I've fallen three times in December. That may not seem like a lot, but it's for the grace of God that I haven't fallen more. It seems like ever since around December 14 and on that every time I walk, I feel like I'm going to fall. It's very hard to explain, so I'm not going to! However, despite the walking, December has been an awesome month. I celebrated my 5th year at Scripps Networks on December 20th. I have had so much fun shopping for Christmas gifts and just being in the Christmas spirit. I love all my Christmas decorations. If my tree looks exceptionally's because I found out that Foster had died when I was setting it up and to keep myself from crying or thinking about Foster being gone, I sat there and pulled apart all the branches to the tree!! I know decorating a house is supposed to be so that you can share it with others, but this year I have had just as much satisfaction in sitting in my living room every night just looking at my decorations. It makes me feel all warm and fuzzy inside. I have loved going to the Advent services at church and doing all the church activities. I am now working with the Evangelism committee at church and am the lead of the Personal Touch Committee. Basically that means that I am coordinating with others to send out hand written cards/letters to neighbors of Grace Lutheran to invite them to attend church. I have 12 people in my group. Our first duty as this newly created team was to send out Christmas cards. So I went and bought around 15 boxes of Christmas cards. I love to write and I have been wanting to get more involved in church, but then again, I didn't want to do things that involved a lot of walking. So writing cards is right up my alley! I love it. I myself sent out 54 of the cards and then the others on my team each sent out at least 18 cards (1 box) and some sent out more. We sent around 250-300 cards out. Our big push will be in March when we will send out 500 cards to neighbors to invite them to Easter services and we have our big Evangelism initiative. So, if you are reading this and you are on my team, just know I'll be calling you soon :) I had a wonderfully blessed Christmas. As I put in one of my status updates, I could not have wanted, asked for or been blessed with a better Christmas. Stanton and Aubrey were here so the entire family was together again. And then I got "snowed in" with Mom and Dad at their house. I only live 2 miles away from them, but I didn't want to risk driving home (if you know my driving record, you know why!) plus I didn't want to be by myself- so I spent the night with them on Christmas night and on December 26. It was a lot of fun because I got to spend more time with Stanton and Aubrey and Steven. So- I am still living. Though I am having walking problems, that hasn't kept me from having fun and seeing the blessings that I have in life. My next appointment with Dr. Matthiessen is not until March 30, 2011. Hopefully by then, I will be walking better. I will start physical therapy again in 2011 (this is going to be a life long thing) and who knows what God has in store for me in 2011. Whatever it is though, I'll trust that He knows what's best and I'll just keep on living and growing in Him.

UPDATE---> January 31, 2011

I just wanted to say THANK YOU to everyone for your comments on this journal. They truly have been very, very encouraging and not one of them went unread. Sometimes, I get so caught up in trying to deal with this that I forget people don't necessarily see just that part of me. It consumes me sometimes so much that I think that's all anyone ever sees me as now- just someone who can't walk very well and would be a burden to hang out with. So thank you for reminding me that it's not always like that! To tell the truth, walking was horrible again this month, but it's alright. God gives me what I need, when I need it. I semi-fell a couple of times this month. By that I mean, I did fall, but it could have been much worse. I kind of caught myself on the way down both times. Not enough to keep me from getting some bruises, but not enough to qualify as a full blown fall either! Plus they both happened in the privacy of my own home and no one saw me fall (hey you have to find the silver lining somewhere!!) I came to the conclusion this month that a couple of things happen when I fall: my leg has a spasm and then my foot collapses. It's beyond frustrating. But that's life. I've got to figure out how to deal with it! Dad said something in church yesterday right before the prayer that truly struck a chord with me. I don't remember his exact words, but he said something to the effect that we pray to God to heal us but sometimes God decides that what we need best is to not be healed so that greater glory may come of it. So whether I'm healed completely or not, I know it's for God's glory and great things will come of this. So many of you are so very encouraging to me. Just this month, my best friend in high school sent me an instant message and said that I was an inspiration to her. I have no idea why I'm an inspiration to her, but just hearing that made my day. I was walking out of work the other day and a guy was walking out the same time I was and asked if I had an old football injury. The question startled me at first and then I realized what an ingenious way of addressing the elephant in the room! He totally made me laugh as I responded, I wish! He asked what was wrong and I told him that right now the diagnosis is dystonia. This is the first person ever to say that he knew what that was! Turns out his step-sister was diagnosed (incorrectly) with dystonia before being diagnosed with MS. Just that 5 minutes or so with this guy (whom I didn't even get a name from!) really made my day. The fact that (1) he started with a joke (2) really wanted to know what was going on and (3) that he actually knew what dystonia was made me feel more normal about the whole thing. I love how God just puts people in my path to uplift me and help me through the day. I hope that I can be half as encouraging to everyone as they are to me. My prayer is that God is glorified in all I do, no matter my circumstances. Thank you all again for praying and for being so encouraging to me!

UPDATE--> March 1, 2011

How can it be March already?! Seriously, it just seems like yesterday that it was Christmas and here we are three months into the new year. How shall I describe February?! was a great month! My walking started off rough but about half way through the month I was back to "normal". Ha! Normal. What is that anymore? Well normal for me is being able to use the cane most of the time unless walking long distances or somewhere that I can't grab a hold of something if need be. For awhile there, I seemed to be using the walker all the time even in the house, everywhere I went at work, everywhere at church. But now, I am able to use the cane again on it's own for short periods of time. That is not to say that I ever leave the walker at home. It is ALWAYS with me in the car. But now I am able to get around work and home and church and around stores using the cane. But there is always that pesky problem of getting into those places, therefore you're more than likely to see me with both the walker and the cane! I may ditch the walker when I get in to work or in to church, but if I do, the cane is my friend. I've noticed something about the cane too. I used to always walk with it on my right side. I've been told by the physical therapist and the doctor that this is the correct way to walk with it. You are always supposed to have the cane on the opposite side of where your problem is. However, I have been noticing more and more that I am switching it to my left side. For some reason, I feel like it gives me more support on that side. My physical therapist thought it was interesting. BUT- at the same time she would always get on me for placing the cane in front of my left foot (while I was holding it in my right). She kept telling me, I wasn't blind because that is how it looked, like I was using the cane to guide me. So she finally gave in a little (I think!) and said that if I felt more comfortable using the cane on my left side, that I could do it like that. What's interesting about the whole situation is that I have never felt comfortable using my left hand. Remember the dystonia is in my left hand too. My left hand has never been my dominate hand. I write right-handed, I do everything with my right hand. But I think I may be starting to figure myself out a little bit :-) When I hold the cane in my left hand it does two things. One, it gives my left hand something to do. That may sound strange, but what I mean is that it calms my left hand down. It's not as obvious, but I can definitely feel my hand cramp up. When I have the cane there, it calms it down. I think I might have mentioned this before, but in the book I read about dystonia, this is actually one way of subduing the symptoms. That is, to touch or rub the part of the body that is dystonic. It sends a message to the brain to stop with the spasms. So anyway, I think that is what having the cane on my left side is doing to my left hand. Two, I think that it is also doing the same thing to my leg and foot. I always wanted to put the cane in front of my left foot while holding it in my right hand because for some reason it calmed my foot down. So now that the cane is on the left side, I eliviate the weird walking-like-I-am-blind way that I would use the cane and also it eliviates the tripping. Yes, I would trip myself :-) Anyway, it's very hard to explain all of this in words; it's definitely easier to see it in action. I do tend to switch which hand I have the cane in a lot. I don't really know why I do that, it just has to feel right for me to be able to want to walk. I guess whatever works, right?! And while February was a pretty good month for walking, I did fall. Maybe it's because I get too confident sometimes? I really have no idea. But, I fell last week. I was using the cane when I fell too.There were several "interesting" things about this fall. One was that it was the Monday after I got back from an awesome weekend in Alabama. It was awesome for so many reasons, but one of them was that I didn't use my walker at all!! I, of course had it in the car with me. But I relied heavily on either the cane, someone else and sometimes both! I had a great walking weekend. The second interesting thing was that when I fell this time, I bruised up my right knee. This never happens! Usually when I fall, I know that I will have either a huge bruise or huge cut on my left knee (it's just the way I fall!) but this time, I landed on my right knee. The third reason it's interesting is that I laughed so hard after falling. That rarely ever happens! But it was just the circumstances surrounding where and when and how I fell that made me laugh hysterically. I'm not revealing the surroundings, because chances are someone reading this may have heard me (although I will say, no one saw me, I do know that!) I'm still laughing about it and it happened a week ago! Anyway, God is showing me how to live with this and I am very blessed for that. I still pray that I am cured of it, but am so very, very thankful that God's grace is upon me.

UPDATE---> March 31, 2011

Laughter. How I love laughing. Unfortunately, I tend to be more melancholy (just ask anyone in my family), but I am trying to laugh more. I should definitely laugh more. I should laugh to keep from crying sometimes. I have realized that this month. I went and saw Dr. Matthiessen (my neurologist) yesterday. It was a great appointment. It started off by him asking me how I was. I said good. He said, really, or are you just saying that?! And then I confessed that I guess it was a little of both. We laughed. I told him about the three falls I had this month. We laughed. OK, he wasn't laughing because I fell or anything, it was the circumstances around how I fell that made both of us laugh out loud. We laughed when I told him that I found that I can not walk with the walker and hold an umbrella at the same time. He said that was a very good point (this is one of the times that I fell, trying to walk with the walker and hold an umbrella at the same time does not work- take it from me!) He kept telling me that I had a great attitude about my illness. I knew what he meant. He knows (and has seen!) that I don't always have a very good attitude about this, but with time, comes the realization that if you don't laugh about it you're going to cry and what's the use in crying?! This is not to say that I don't cry about this anymore- that is far from the truth, I've just started seeing that it isn't necessarily worth my time and energy to do so. I have good days and bad days. Days when I want to laugh and days when I want to cry and scream. That's life. But my appointment with Dr. Matthiessen, was actually very refreshing. I know that sounds weird, but he is such a great doctor. I told my mom last night that I think that bedside manner could possibly be worth around 90% of the whole experience. I told her that he's the type of doctor that could tell you that you are dying and you would thank him just because of the way he delivered the news to you. He is so personable and really listens to you. He cares. He treats the whole person and not just the disease. Case in point: We have this running dialogue. He always asks me how my relationship with the walker is. He knows I can't stand it; that I get embarressed by it, but he also knows I need it. So he'll ask how the relationship is. My response is that it's a love/hate relationship. This time around we joked about how I throw it into the back seat of my car and I am very rough with it. I commented that I'm getting pretty strong arm muscles from lugging it everywhere and he agreed. He asked if I was happy with where I was in my treatment. I looked at him and said, "happy?" and then he said "well, let me rephrase that, are you content?" And to that, I had to say yes. Not that I am, really, however, I know (as does he) that this isn't just going to go away. There is no quick fix (which I held out so much hope for). It's a lifetime thing. That still hurts. Knowing it's a lifetime thing. But, God is helping me come to terms with that. I still believe that I can be healed instantly, if that's God's will, but I'm beginning to think that His will is that I succeed in spite of it. I live for Him in spite of it. I carry on in life in spite of it. I want to inspire people with how I live my life. This is the life that I've been given. It's not perfect, but whose life is? And it could be a lot worse. I thank God for everything He has given me- even the small stuff. I have to tell this: yesterday when I went to see Dr. Matthiessen, I prayed that it would not rain (see above for reason why: walker and umbrella's do not mix!) when I had to get in and out of work and in and out of the doctor's office. I knew it was silly, but God does say to bring EVERYTHING to Him in prayer. So that was my prayer. And guess what?! Although it rained all day yesterday, it did not rain when I was walking in or out of work or my doctor's appointment! Thank you, Jesus! One last thing. Since I do have such a love/hate relationship with the walker, I've decided to try something else. I ordered fore-arm crutches. I told Dr. Matthiessen about this and he was really excited. He said that the next time I come in to see him, he wants me to bring them. He wants to know how/ if I like them. I have ordered them, but they haven't arrived yet. I told Dr. Matthiessen, I was a little scared to use them. I have, after all, gotten very used to the walker. I'm scared of falling. I shouldn't be, considering, I do fall a lot, but I am! I fall while using the walker- it takes real talent to do that! I'm scared, but kind of excited at the same time. It's something new. I'll see if it works. If it doesn't, I always have the walker to go back to. I'll end on this note: I am constantly amazed at how God is so good to me. I have a life to live for Him and I plan to do just that. My life is nothing like how I planned it to be or wanted it to be, but it is so much richer and fuller and yes even happier then I ever imaged because of the things that have happened in it. God knows exactly what He is doing in and with my life and I am beyond thankful for that. I just hope that others can see the way He is working in my life.There is no greater joy in life then seeing people come to know Jesus. If my circumstances are a part of that plan, who am I to hinder that? In all things, I will praise the Lord.

UPDATE---> June 17, 2011

It's been awhile since I've updated this note so I thought I'd fill you in on what's been going on lately. Well, first things first: I ditched the forearm crutches. Yeah, I used them, I think, approximately one weekend and then went back to using the walker! They just don't give me the support that the walker does, or maybe I'm just too used to the walker now, either way, I feel better with the walker. That's not to say, I won't use the crutches again- just for now, I'm fine with the walker! Speaking of walkers- I got another one. This is thanks to Foster, again! After he died and his wife Rose had a chance to clean out the house, she gave me another one that he had. So now, I have one for the house and one for the car. This makes life a lot easier. I don't have to constantly load the walker into the car to go anywhere or take it out of the car when I come home. I am very blessed to have two now! My, how life is changed :-) Who would have thought at the age of 31 I would be talking about walkers and how great they are in life- haha!! Oh yes, I just turned another year older- funny how that happens every year! But, I must say, since last updating that I have done several things that I never thought I would do, much less do with having to walk with a walker. The first was volunteer during revival week at church. I had already "copped out" of the service day we were going to have at church. I told Dad that I just didn't think I could do it, you know- with the walking problems and all. There were two service projects going on- one was to plant flowers at a local elementary school and the other was to pick up trash along Middlebrook Pike (on which road our church is located). Dad said it was fine (and for those of you reading this who don't know, my dad is the pastor of my church, which is why I keep talking about him like he was the one leading all this) and that he understood not all the members would be able to participate in the service day activities. I was fully prepared to NOT go out and do any of the service day projects, however the day arrived and I went to church in my jeans and tennis shoes (I think this was more because I had actually never done that before, then me actually saying to myself that I could help out in some way!) We had an abbreviated worship service and then it was time to go out and do the service projects and something in me (the Holy Spirit) just told me I could do this. I didn't know exactly how I would do it, but I could do it nonetheless. And I did. I must have looked awfully strange, but I didn't care. I was part of the picking-up-trash-along-Middlebrook Pike- crew and it was so much fun. Yep- walker and all, I walked down Middlebrook Pike in my neon yellow vest and picked up trash. I think it was God telling me that I could anything if I just put my mind to it. I mean, grant it, picking up trash is not hard, but when you have to walk with a walker, you're wearing a bright neon yellow vest you're out on a busy street picking up garbage- you're gonna get noticed and you gotta have courage :) I was so BLESSED by that experience. And- I found some interesting items such as half of a bird bath, part of car, about cartons worth of cigarette butts, and many, many more interesting finds. I realized during that service event that the people that didn't want to help, didn't show up- and that was fine. But I- who DID want to help, but wasn't sure I could- was given the opportunity to do so, despite any handicaps and it felt so awesome. And like so many service events/ mission trips/ evangelism opportunities- I felt that I got the most out of the experience rather than anyone who would benefit from the cleaner streets of Knoxville. It's always the one who serves that seems to get the most out of the opportunity- funny how God lets that happen! Others things that have happened since I last updated....I went to a Cinco de Mayo event at work. This may seem like no big deal to anyone but me, since it was held right in the parking lot at work- but it was huge. Huge, in the fact that I didn't care at all to use my walker. So- you have to understand something. Yes, I've been walking in and out and around work for about a year with the walker every day, but my company is pretty big. And, most of the time, I am on the 3rd floor with the people that I work with. They all know that I have to use a walker, but the rest of the company, well- not so much! I still get uncomfortable having to walk with the walker around people that don't know what is going on and to whom I might have to explain. I thought about not going to this Cinco de Mayo event, but then decided that I wanted to have fun more than I wanted to be sheltered from any questions or stares I might or might not get. So, I went and I had a blast!! It was so much and I am so glad that I didn't miss out on such a fun time all because of fear. That is what I am finding more and more true these days: the things that I fear may happen, usually end up NOT happening. The moral? Don't worry and just do it! Easier said than done- believe me :-) But I am getting more and more comfortable walking around work, around people I don't necessarily know and not caring that I have to do it with a walker instead of just my own two feet. This is truly a journey though. There are some days when I feel like taking the bull by the horn and I feel like I can do anything and other days when I'd rather just duck and cover and not set foot out of bed. But I guess life is like that in general! Speaking of bulls...another thing I did, that I never in a million years thought I would do- much less with a walker- I roped a bull. OK, maybe not a real, live bull...but a hey, I roped a fake one with a real cowboy standing by :-) I absolutely love my job- LOVE it!!! One of the networks of Scripps Networks is GAC (Great American Country) and they will now be airing pro bull riding competitions and the like on their network. To celebrate that, two of the world champion bull riders made a trip to Scripps to meet all of us that work there. And they showed us how to rope! Again, I didn't think I could do this- mainly because I was watching some others do it before me and I wasn't sure I would have enough balance. Plus, I didn't know what the cowboys would think of me trying it- seeing as they obviously saw the walker. But I put fear aside for a second and asked if I could try and they said of course. Well, that was all I needed. I have to say that I can be downright stubborn sometimes (I know, this comes as a huge surprise to those that know me well- ha!) and I wanted to rope that bull until I actually roped him! Roping is a lot harder than it looks! I'm just saying! I must have thrown that rope a gazillion times and only got it around the bull twice- but by golly, I did it!! And the cowboys- well let's just say they made it all that more enjoyable. I might be making a trip to Oklahoma sometime soon. Any of my FB friends live in Oklahoma?! Seriously though, they were great. They were so kind and SO patient!! It was really an awesome experience. And- to make it even better- one of my co-workers was filming me on his iPhone (which I didn't know he was doing at the time!), so now I REALLY do have evidence that I roped a bull. I have a ton of pictures too :) I am blessed beyond measure. Truly, I am! There are days that I can get so down and out about my whole situation and feel so sad. But then, I just realize how far I've come- maybe not physically- but definitely mentally and spiritually and I know I am blessed. To have had the experiences I have had- both good and bad- have made me who I am. I am still learning (and will be all my life). But for the moment, for all the little moments that make up life- I am truly grateful. Life is good- even when it isn't, because God is good and He is good all the time!

UPDATE----> September 17, 2011

Wow- I can't believe it's been three months since I last updated. Writing is very theraputic for me, but sometimes can be very draining. I am mainly keeping this journal for myself to remember things by, but also to fill friends in on what's happening- but I do have to refrain myself sometimes. Because what fun would it be if you all knew every deepest, darkest secret I have?!! I usually end up starting these updates and deleting them and restarting them until I have written exactly what I want you know. This summer was a tough one from the perspective of walking. June was an OK month. Nothing really to report, other than I got another year older. Turning another year older does make me really think now. I mean, usually, the older you get the more aches and pains you have, right?! This is not boding well for me. If I'm only 31 and already have to use a walker wherever I go...well...I choose to think that by the time I'm 61 maybe I'll be walking with just my own two feet. I can always dream right?! Maybe I'll be like that Benjamin Button movie, but instead of getting younger the longer I live, I'll start getting healthier and stronger the longer I live. July was a good month. I don't know why, but walking was much, much better. Although- if you saw me you probably couldn't tell. I say that because I use the walker all the time- whether I'm having a good day or a bad day. By a good month- I mean that I could walk with the walker and NOT feel like I was going to lose my balance, fall over, trip, slip or fall. Now, take the walker away from me and it's a whole different story. I did start "testing" myself again, meaning that I walked without the walker from room to room in my house and that sort of thing, but really never anywhere outside of the house. Dad and I were talking earlier this month (September) about my walking and I explained it like this to him: It's like I have to relearn everything, every morning. It's like when I go to sleep at night, my remembrence of how to walk, somehow gets twisted and the next morning, I'm trying to find my feet again. I can usually tell within the first few seconds of walking in the morning if it's going to be a good day or a not so good day walking. It's not completely like having my memory erased or anything of that magnitude, but I do feel like I have to relearn things every morning. Maybe I have to build up courage too- like knowing that when my foot touches the ground it'll support me and not give way. It's not just about doing physical therapy and everything will be fine. Sometimes physical therapy helps, sometimes it doesn't. It's truly a neurological thing. I think there's only so much that I can retrain my brain to do. Hard fact, but I'm beginning to see that. Let me tell you, if it's not a good walking morning I'll know right away and I'll know that I am more than likely not going to have any better a day walking. If it's going to be a good day walking, I can usually tell as soon as I get of bed and it'll last pretty much the whole day. Hope this gives those of you reading this a little more understanding as to the process. So July was a good month and then came Ausgust. August was the flipside of July. It started off with me falling- at work no less- in front of people- while using the walker!! Takes talent to do that, people, it takes talent!! And it only went downhill from there, so to speak! The month of August I never had my balance. I lost it and could not find it. It got to the point where I was seriously considering working from home some days because I didn't think I could make the trek in from the parking lot to my cube. But alas, I did make it in. I guess this is where it is good to be a little stubborn sometimes. I wasn't afraid to ask for help, but I was NOT going to have this keep me from going into work or church. Every morning in August I would wake up with the hope that that day would be the day that things would turn around and I would be walking OK again. It didn't happen, but that didn't keep me from praying that it would! People sometimes ask me what my everyday life is like. They want to know how I do things. I tell them when I'm having a bad day (or a bad month) I do what absolutely has to be done and nothing more. When I am having good day, I try to cram everything in. I stock up for those "bad" days. When I go grocery shopping or just shopping in general, I don't just go for a few items, I cram that cart full of everything I can possibly imagine I'll need for the next month or so. When I clean, I don't just clean one room, I clean the entire house top to bottom until there's nothing more I can clean. So that way if the next week, I'm having a horrible walking day, it's OK, I can just stay home and not have to go out or worry about cleaning. There are the times though when I am having a bad day/week/month and I do have to go out for something (whether shopping or an event) or I do have to clean or do something that requires real effort and on those days, I just suck it up and deal with it- praying the whole time I don't fall or embarress myself and if that does happen, well then I thank the Lord it wasn't worse than it was. But believe me, I have a horrible attitude some days. I think sometimes I sugar coat these updates a little too well. If you only saw me (and hopefully you never will) on really bad days, you would know how completely frustrated I get and how this whole experience has really changed me. I'd like to say that it's changed me for good- but the truth is, it's not all good. If you only knew the true inner workings of my heart, you may not be so quick to say "you're handling this so well". I wish was!! But honestly, there are days when I feel like I'm at a breaking point. But then, God gives me a glimmer of hope. It's mostly the realization that things could be a lot worse. There are people in a lot worse circumstances than me. Then I start to feel guilty for feeling horrible about my situation. But God forgives me for that, which I am forever grateful for and He shows me grace once again. So, even though August was a hard month, there are lessons to be learned from it. Because August was such a hard month, it almost kept me from going on my church's family retreat this mornth. I had made up my mind that there was no way that I was going to go and then at the very last minute, God (and my friend Anna) changed my mind. I didn't have to give the fee right away but I knew if I didn't pay up front, I would end up backing out of it. I'm glad I paid up front (in August) because my walking seemed to just get worse and I started doubting my decision to go on the retreat. But September is now here and it was like a switch turned on. I started walking OK again!! This time it was a gradual process though. In the past, it's seemed like it's happened over night. One day I'm walking horribly and the next I'm back to walking OK, but this month it a took a few days, which is OK with me. Over the Labor Day weekend, I went on my church's family retreat. All I have to say is that I am SO incredibly happy that I went. God always meets you right where you are. I really wish I could remember that every day I am having a horrible day!! :) The theme of this years retreat was how God is our LifeLock. Incredible weekend, with incredible people. At the retreat, a little boy Issac, who's 2 (almost 3!) asked me what my walker was. He is so incredibly cute, this little guy. I told him it helped me walk and showed him how it helped. He thought it was so cool that my walker has brakes and wanted to see how those worked, so I showed him. He wanted to know every mechancial thing about the walker. Since coming back from the retreat a little girl that I used to babysit for asked me about the walker as well as a man that has been coming to church for years. In each circumstance, I did not mind at all. Not that I will feel like this every time someone asks me about it, but I must say that I have come a long way since when this all began. I am learning. I am so ever grateful that God is with me every step of the way, through the good and the bad, through mountaintop experiences and in the deepest, darkest moments of life. No matter what my life looks like - whether I'm mad, sad, disappointed, frustrated or thing will always remain true: I'm God's and nothing else should really matter.

UPDATE---> September 30, 2011

So today was a rough day. I have no idea why, but it was. Just when I think I might have accepted this whole condition called dystonia, it tends to creep back in and I start having the feelings that I had at the very diagnosis of it. I went and saw Dr. Matthiessen today and I told him that in the 6 months since I had seen him last, I felt like my symptoms were getting worse. And this is when it sinks in, that this isn't going away. I know there are a lot worse off people than me, but sometimes, like today, it just hits me that this is my life now. He asked me to tap my foot on the floor. Something as simple as tapping my foot and he saw that it was with great difficulty that I tried to do it. My body doesn't work like it used to or should. I tapped fine with my right foot, but my left foot, well the left foot I guess is a sign that I am human and that things don't always work like they are supposed to. I get so frustrated with myself! He checked the tone in my right arm/ hand and they were perfect. He checked the tone in my left arm/ hand and they were alright. I guess alright is better than horrible or not present, but still not as good as perfect. I told him I was having problems with my left eye now too- something I didn't really want to admit, but I've noticed within the last couple of months. It's kind of hard to explain, but it's just a different feeling than my right eye. You know- that feeling you get when you know something isn't right, but you can't really tell what's wrong. I told him that now, most of the time, I walk with a stiff left leg, because to bend my knee either makes my leg spasm or I lose my balance and fall. So, my options? More physical therapy or more medication. Neither a miracle. After much discussion, in the end, the decision was made to increase the medication. I can definitely feel the effects if the medication has worn off or I've accidentally skipped a dose (which I try NEVER to do). My whole body (OK, maybe just the left side) shakes with spasms. Thankfully, I've only seen this a few times and it really hasn't been that noticible to others. I guess this is why this drug that I am on is used primarily for Parkinson's patients! It truly does relieve tremors and shaking! We talked about therapy again and I wasn't too keen on the idea. Not that I won't do it, it's just that sometimes it makes it worse. And I can do most of the exercises I learned in PT at home. He agreed and said that if I wanted more physical therapy we could re-evaluate at my next appointment. I am so grateful and blessed to have a doctor that listens to what I am saying. He even asked if I had any therapies or treatments I wanted to talk with him about. I didn't, but this makes me want to research all that more intently treatments, therapies, surgeries, devices, whatever can help me and bring them up with him at my next appointment. I keep hoping and praying for that miracle drug or that miracle surgery that will cure me. God and I had a long talk today as I drove back to work. I told Dr. Matthiessen that I want control and with this condition, I have absolutely NO control and it drives me nuts! So God and I talked about that. I know He is in control of EVERYTHING. I don't know what His plans are, but I do know that they are not to harm me, but to give me a future. If there was a theme to my prayers today, it was I want my life to have meaning. So if I am to have this dystonia for the rest of my life, I want there to be meaning to it. And then God brought to my mind the song by Steven Curtis Chapman titled "Meant To Be". I listened to it several times today and it brought me such peace. God's plan is greater than any plan I could ever conceive for myself and I was meant to be. Every little, or not so little, event that takes place in my life is meant to be. I was meant to have dystonia. I don't know why, but I know God is going to use it for good. I'll post the lyrics to the song here at the bottom, but one part of the song struck me deeply today as I was listening to it: "Long Before You Took Your First Fall, You stumbled to the ground, God started telling the story of you to the angles around, Every failure and victory, Everything in between, Its all in his hand, You Were Meant To Be" It was like God was speaking right to me through those words today and that's what I cling to. God knows my ever need, He knows when I fall and when I'm hurting and He's there. That's what gets me through the rough days.

"Meant To Be"

Words and Music by Steven Curtis Chapman

Long Before You Drew Your First Breath

A Dream Was Coming True

God Wanted to Give A Gift To The World

So He Wrapped It Up In You

Every Step That You’ve Taken

Every Move That You Make

Is Part Of His Plan

You Were Meant To Be Touching

The Lives That You Touch

And Meant To Be Here

Making This World So Much More

Than It Would Be Without You In It

You Were Meant To Be Bringing

The Gifts That You Bring

And Singing The Songs

You’ve Been Given To Sing

You Are Perfectly, Wonderfully,

Beautifully Meant To Be

You Were Meant To Be

Long Before You Took Your First Fall

You stumbled to the ground

God started telling the story of you to the angles around

Every failure and victory

Everything in between

Its all in his hand

You Were Meant To Be Touching

The Lives That You Touch

And Meant To Be Here

Making This World So Much More

Than It Would Be Without You In It

You Were Meant To Be Bringing

The Gifts That You Bring

And Singing The Songs

You’ve Been Given To Sing

You Are Perfectly, Wonderfully,

Beautifully Meant To Be

You Were Meant To Be (yeah)

Meant To Be

You are

You are

You are meant to be

You are

You are

You are meant to be

For every breath that your taking

And every move that you make

It’s a meaningful life you’ve been given

Live it well

You Were Meant To Be Touching

The Lives That You Touch

And Meant To Be Here

Making This World So Much More

Than It Would Be Without You In It

You Were Meant To Be Bringing

The Gifts That You Bring

And Singing The Songs

You’ve Been Given To Sing

You Are Perfectly, Wonderfully,

Beautifully Meant To Be (yeah)

You Were Meant To Be (yeah)

You Were Meant To Be (yeah)

You Were Meant To Be

To Be

You Were Meant To Be