Let's talk about....Dystonia

First let me say that I am highly embarrassed that I have not written on this blog in MONTHS! I am so sorry...life just happened and I haven't had the desire to sit still for a few minutes and update. That's not to say, I haven't thought about it; I just didn't do anything about it :) Summer's been a whirlwind. I'm sure others can say the same (especially all those who are now back in school!) So now, the real reason why I finally decided now's the right time to update the blog!

I've been thinking about the ALS ice bucket challenge that's been going around on Facebook. I think it's awesome to raise awareness of a disease that takes so many lives. I'm thankful it's raised so much money for the cause. But I have a different opinion of it then most probably. I've gotten a little jealous of it. Yes, that's the word I'm choosing to use to describe my feeling: jealous. You see, I'm so thankful that it is raising an awareness for ALS and that so many people are getting into it and doing it, but I'm jealous it's not for dystonia. Dystonia is not a "glamorous" disease. I'm not saying ANY disease is glamorous, but what I am saying is that dystonia is not a disease that famous people have picked up on, championed the cause for, raised money for, insisted that everyday people raise money for -it's a disease I had never even heard of until I was diagnosed with it. It's a disease no one knows about. But it's a disease I hate with all my heart! I hate it so much, I don't even like talking about it. I realized this when I had a conversation with co-workers about the ALS ice bucket challenge which then led into a conversation about dystonia. They encouraged me to make dystonia the new ALS ice bucket challenge and I had to admit that I didn't want to do that because I hate talking about it. Why I hate talking about it so much, I don't know - maybe it's because I'm still, in may ways, embarrassed by it. I hate using a walker. HATE IT. I'm STILL (even after 9 years of dealing with it and 4 years of actually having a name to it) fighting to prove to myself that I don't have it and that I'm "normal". But the truth is, I do have it. I do have to walk with a walker every single day. It does effect my life. It's not going to get better unless we come up with a cure for it. So maybe I should take up the cause. Not because I want to; but maybe, just maybe because I MUST. Something a co-worker said to me has been rolling around in my brain: what if it's YOU that becomes an inspiration to a little boy or girl that has dystonia? Then today, I was standing in line at a store waiting to return something and out of the corner of my eye, I saw a woman staring at me with my walker. If I told her the disease I had, she probably would answer like the 99.9% of the other people I've told with an "I've never heard of that". I hate the stares. I must make people aware of this disease. I don't want this disease. I don't want to talk about it. I don't want to give it the light of day. BUT - I have the disease. I've made up my mind that I MUST talk about it. I MUST give it the light of day. I MUST support the efforts being made to cure it. I really don't feel like I have the strength to do it mentally or physically, but I've got to get the word out. I'm one person. I know I won't win the world over to my cause. But as my neurologist likes to remind me, "Rome wasn't built in a day". I have NO IDEA what I'm going to do to get the word out about dystonia, but I'll get it out - even if it's just by living with it and maybe updating this blog just a little more :)

I'll start with this: September is Dystonia Awareness Month. I'm challenging myself to write on this blog every day in the month of September - whether it's a few words, a picture, quote or a little longer post, I want to take you IN to what living with dystonia is really like on a daily basis, so - pray for me - this is going to be a CHALLENGE!! While, I'm pretty much an open book on things I want to be an open book about, writing every day about a disease I have but don't want will be a challenge. So...I've got a week to prepare and then it's go time!! Have a blessed week everyone and I'll see you back in blog world on September 1 if not before!

His Eye is On the Sparrow

For the past couple of days I have been worried. I know, I know - it's wrong to worry, but I have been nonetheless. Worried about grown-up things - like paying the bills and stuff like that :) I've been praying about it and seeking the Lord's will. But, I'm still worrying!!!

On a side note - I get songs stuck in my head ALL THE TIME. If you don't believe me, ask my co-workers :) They'll tell you that all they need to do is say one or two words of a song and I've got that song stuck in my head for the rest of the day. Same goes for commercial ditties and anything put to music - haha! It's almost annoying :)

Back to why I'm writing this post. So, I've been worried about bills and having "enough". Well yesterday, I was at work and out of the blue I got a song stuck in my head. I had no clue how I got it in my head in the first place since I hadn't listened to it or heard it playing. It just popped in. After thinking about it for awhile though, now - I know exactly how it got stuck in my head: God put it there!! The song is "His Eye is On the Sparrow"

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heav’n and home,
When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Refrain:
I sing because I’m happy, I sing because I’m free,
For His eye is on the sparrow, and I know He watches me.

“Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I've had the song rolling in my head non-stop since yesterday afternoon. I was speaking with a co-worker this morning and she told me that having the song stuck in my head was God speaking to me. He knows my needs and will provide. I need not worry. He says it again and again in His Word. My absolute favorite Bible verse re-instates this as well: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

I need not worry because God's got me in the palm of His hand.

"29 Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care.[a] 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows." Matthew 19:29-30

I shall not worry because the Lord has declared that I am worth more than many sparrows!!! And he cares for the sparrows, so I know He watches me!!!

An amazing promise from the Lord! I shall not worry. I will rest "on his goodness and lose my doubts and fears." I hope this post brings you hope if you too may be worrying. "His eye is on the sparrow and I know He watches me". Amen and Amen!!

Easter Weekend Joy: "I'm so happy"

It's taken me two days to write this blog post. I didn't want to leave anything out and yet I know as soon as I post this, I'll think of something else I want to say. Oh well, such is life :) So without further ado, here's a little recap of my Easter weekend.

Maundy Thursday was awesome. My work friend, Debbie came to the service which made it even more special to me. We got to partake in the Lord's Supper - Jesus' body and blood. There's nothing more precious. Here's a picture of the bulletin:

Do you see anything different in this picture as opposed to other Lord's Supper paintings/pictures? Your answer should be yes :) My dad pointed out to the congregation that you'll notice Judas is pictured, but he's the only one that does not have a halo. I thought it was neat.

Good Friday was an overcast day here in Knoxville- how very appropriate! Our Good Friday service is very solemn and somber as we remember the suffering and death of our Lord Jesus Christ, but at the same time it's magical. It's one of the most precious, meaningful services we have and has a very, very profound effect on me each and every year. Here's the sanctuary decorated for the occasion:

Speaking of magical, one of the most awesome things occurred this year after the service. As the congregation was leaving, the sky outside transformed into a stunning scene in which God and only God could have planned and painted for the ending of Good Friday:

The picture doesn't even do it justice. It was in one word: spectacular!

Saturday was the annual Easter Passion Play and egg hunt for the kids at church. It was a blast as usual and huge kuddos again go out to Jeff and Amy S. - the "brains" behind the whole shabang. 

I know there are others too numerous to count that all made Saturday happen and if you are one them and reading this, a HUGE thank you goes out to you as well. I had the honor of helping with the crafts. Here's the craft we did:

In my humble opinion the absolute best part of the Easter Fest at church is the Passion Play:

Hosanna, in the highest! (And, yes, that is a real donkey!)

The Lord's Supper

The walk to Golgatha

The crucifixion 

Jesus appears to Mary

Our resurrected Lord!!

Easter Sunday was a glorious day filled with celebration!!! We celebrate that the grave is EMPTY and JESUS LIVES!!

My God reigns! Sin, death and the devil have been defeated and my God reigns. Hallelujah!

My Aunt Sue, Uncle Vince, Katie, Stuart and Steven before Easter Sunday Services

Mom and I before Easter Sunday Services (the senior pastor offered to take this picture of us - wasn't that nice of him?! It's almost like he is family or something! -Haha)

Dad preached a great sermon, but I have to admit, I think all his sermons are great :)

Steven, myself, Mom and Dad after Easter Sunday Service

I must say we all left church feeling happy. We got to hear the Word of God, were forgiven of our sins, got to sing some absolutely wonderful songs (thanks, John, Carrie and the entire worship team) and even dance. Yes- dance - thanks to a little song called "Happy" by Pharrell Williams. You may of heard of it :) Dad referenced the song in his sermon and let's just say we couldn't let him be the only one that got to dance!! Who said Lutherans can't have fun in their worship services?! We sure did and I couldn't have thought of a better Sunday to dance around and praise the One who gave us life, then on the day we celebrate our resurrected Lord. It's definitely a Sunday I won't soon forget.

After church, Easter Sunday was spent with family. There's no better way.

The Family minus Stanton and Aubrey

Dad, Mom, Aunt Sue and Uncle Vince

He has risen indeed!

I read this verse on Monday night and I think it sums up this Easter weekend perfectly:

"Happy are those who hear the joyful call to worship, for they will walk in the light of your presence, Lord." Psalm 89:15

May you have been as richly and abundantly blessed this Easter as I was and may you dance, as I did, in the presence of our resurrected Lord!

The most important week of the year

Holy Week - I have always, always loved this week. Since I can remember, it's been my most favorite week - even when I didn't really know why. It was a time I got to go to church 4 times Sunday to Sunday for worship services and sometimes (OK - most times!) more than that. But not only is this my most favorite week, it is THE most important week of the entire year. Starting on Palm Sunday we remember and celebrate why Jesus came to earth. For those that don't know what happens this week or why we celebrate you are missing out on the biggest celebration of all time. Nothing in this life - nothing - compares to what Jesus did for you and me this week. It's miraculous, selfless, mysterious and all around the greatest thing to ever happen to you and me - Jesus was betrayed, suffered, bled and died for our sins and on the third day rose from the dead defeating death and the devil and giving those who believe in Him eternal life. Hallelujah! Blessed be the Name of The Lord!

It all starts with Palm Sunday when Jesus was triumphantly ushered into Jersusalem. How very ironic that just a few days later those who were shouting "Hosanna, Hosanna, blessed be the name of The Lord" would be shouting "Crucify Him". Kind of reminds me of my own life. One day I'm praising the name of Jesus and the next, well, I'm very far from praising Him. 

Maundy Thursday is when we celebrate the Last Supper. What strikes me about this day is that Jesus broke bread with his betrayer. Wow. That just blows my mind. He loved Judas, but Judas rejected Him and that's when God rejected Judas. Jesus loved all the other disciples as well and all would abandon him within just a few hours of dining with Him. Oh how this is also like me! I see myself in the disciples. It's scary and glorious all in the same breath. Scary that I can be so callous, so deceiving, so mean and hateful and yet so glorious because the King of Kings died for ME - scars and all!! We also remember on Maundy Thursday, Jesus in the Garden of Gethsemane. Here's what I love about this: Jesus prayed to have this task taken from Him. He was totally human. He did not want to suffer and die. But He did it for me and He did it for you. Amazing and mind blowing - the most selfless act anyone will ever do for us - ever!!

Good Friday we celebrate the death of Jesus. That sentence just seems SO WRONG to type. Death is nothing to celebrate. We mourn death. We cry. We are sad. Why then is this day called Good Friday?! Because of what was to come. So on this day we remember the suffering and the pain Jesus went through. Nothing compares to the love Jesus poured out for me and for you on Good Friday. We remember why He bled and died and we look forward to Sunday.

Easter Sunday is what life is all about. Jesus did not stay dead. Where there is weeping and mourning on Friday, the dawn of Easter Sunday brings rejoicing that can't be described in words. Jesus defeated death, the devil and sin and He ROSE from the dead!!!! There is nothing more miraculous than that - absolutely nothing! Jesus is alive and because he bled and died and rose again, if we believe in Him, we also have eternal life!

May you celebrate this week, with the reminder that Jesus was betrayed, bled and died and then ROSE again for you and for me. There is no greater love!!

Visitor From Heaven

Visitor From Heaven

Words and Music by: Twila Paris

"A visitor from Heaven
If only for a while
A gift of love to be returned
We think of you and smile

A visitor from Heaven
Accompanied by grace
Reminding of a better love
And of a better place

With aching hearts and empty arms
We send you with a name
It hurts so much to let you go
But we're so glad you came
We're so glad you came

A visitor from Heaven
If only for a day
We thank Him for the time He gave
And now its time to say
We trust you to the Fathers love
And to His tender care
Held in the everlasting arms
And we're so glad you're there
We're so glad you're there

With breaking hearts and open hands
We send you with a name
It hurts so much to let you go
But we're so glad you came
We're so glad you came"

I just couldn't let this day go by without stopping to remember Stacia. She'd be 24 this year. Some days 24 years seem just like yesterday. March 21 will always be a bittersweet day. But, God is faithful and even in sorrow, joy can be found. On my way into work this morning, The Lord blessed me with a beautiful sunrise as if to say, "There's a lot of celebrating going on in Heaven today! It's Stacia's birthday! Be happy and thank The Lord for He is good!"

Happy Birthday, Stacia! God knew what He was doing when He created you, when He called you His child and when He brought you home to live with Him.

A God-Struck Thought

I love when God, just out of the blue, smacks me upside the head :) It's been almost 4 years since I got the diagnosis of dystonia and 9 years altogether that I've been dealing with its symptoms. Today, I got smacked upside the head with the realization that GOD'S GRACE IS SUFFICIENT. OK, so, I've known this fact basically my whole life - but sometimes I need a good smacking to remember it! It was an ordinary Tuesday by all accounts, but at work, I was smacked with the thought that God has seen (and continues to see) me through. There was once a time where I distinctly remember thinking to myself "if I can walk, I'll be OK." Today I'm thinking "How incredibly arrogant of me!" There was once a time where I tried to hide the fact that I was having problems walking because I thought it was something I was somehow bringing on myself (and therefore something I had to fix myself). There was once a time I didn't want people seeing me walk with a cane. There was once a time when I was MORTIFIED to have to use a walker and I thought my life was over. But guess what? I'm OK!! My life isn't over because I have to use a walker. Yes, there are times when I shy away from things because I'm scared to death what people will think of me. I'm not brave all the time. But in all circumstances and in every situation GOD is there and His grace is abounding in ways that make me want to cry (in a good way!). God's grace cannot be matched. You know the Bible verse that says "The Lord gave and the Lord has taken away; may the name of the Lord be praised." (Job 1:21)? Well, I assume most people use it in reference to losing a loved one (that's how I've usually referenced it!). But the same can be said of my ability (or lack thereof!) to walk. It can be in reference to anything that the Lord has given and allowed to be taken away. GOD'S GRACE IS SUFFICIENT. In all my needs, in all my worries, my Jesus is right there beside me. How dare I forget that He's with me every second of every day! He's the one that carries me through. Thank you, Lord for taking an ordinary Tuesday and smacking me upside the head. I needed that smacking to jar me awake to the fact that You have never left me. You're the one that makes me able to walk into a room of strangers, walker in front of me and not cower in the corner. You're the one who sees me through every second of every minute of every hour of every day and I will PRAISE Your name in all things. It's by GRACE we are saved and not by our works (paraphrased from Ephesians 2:8-9). It's by GRACE we should live and show others the One by whom all things are given. Please, Lord, don't let me ever forget to praise Your Name and bow before Your throne. Thank you for the reminder, Lord that it's YOU who sees me through and it's by Your GRACE that I can say I have JOY in the journey of life.

Media and Medicine

Two of my favorite things collided on Saturday, March 8: media and medicine. Many of you know my love for ALL things media: TV, movies, acting, writing....But probably very few of you know of my love of medicine. I think it's because of my love of media that I developed a love of medicine. After all, my all-time favorite TV show is "ER"!! I'm just saying :) I find medicine fascinating. I also know that I'm not smart enough to ever be a nurse or doctor! I'll stick to working in the media and live vicariously through my brother who is a doctor!

Well, my two loves collided on March 8 when I got to do what I affectionately call "patient acting" at UT hospital. It was my second time doing it and I had a blast. This time around I played a 22 year old construction worker who fell 35 feet and was unconscious and unresponsive (except to painful stimuli). 

Here's some pictures of my "wounds"

The blue on my face is supposed to represent cyanosis, but I think they really just wanted me and the others to look like smurfs :)

I was patient G. And all the doctors taking the test got confused because their scenario said I was a male, but when they entered the room, they got me :) It also made for lots of laughs!

I was paired up with an awesome doctor to administer the test. He was hysterical and kept me entertained the entire time. He was professional while administering the test but fun in the in-between times when it was just the two of us waiting on the next test taker. Since I had done this once before I knew what to expect. My big deal (since I'm not a doctor!) was that I wanted each of the test takers to remember to say that they would cover me with a blanket (and yes, that's actually a part of the exam - them saying that step out loud). While Dr. A's big deal was for them to remember to say that they would give me a tetanus shot. So, after each doctor came in and took the test and then left we would giggle if they forgot those two steps (It wasn't something that would cause them to fail the exam). Dr. A would say, "Well, I guess your going to die of hypothermia and tetanus...sorry about that!" We had fun :) I also got to meet one of my brother's medical school classmates. She was the doctor overseeing another room's exam but during a break came in my room and just by happenstance we realized that she knew my brother. I sent Stanton a text telling him she said hi. Here's some of my props:

Thankfully, I didn't have to wear the leg immobilzer for real (although I tried it!). I did have to wear the front part of the neck brace and pretend I had the IV's in (I got all tangled in them!)

I had so much fun and actually learned a lot too! I met some wonderful people and really hope I get to do it again soon.