Tuesday, September 30, 2014

Day 30 - Dystonia and 30 Days - Done!!

I feel like Sally Field at the Academy Awards when she exclaimed, "You like me! You really like me!" Except that I'm exclaiming, "I wrote for 30 days about dystonia! I really wrote every day!!" It's September 30 which means that I have officially blogged about dystonia for 30 days straight and hopefully at the same time brought awareness to it. This is absolutely unbelievable to me. What's even more unbelievable is that you have read what I've written!

I have a confession to make. I didn't think I would or could write for 30 days straight about dystonia. :) This whole idea came to me on a whim. It actually didn't even evolve until I physically sat down and wrote my blog post on August 23. I had originally planned that day to do a "catch up" post on what had been going on during the summer. But God stepped in and took over and by the time I had finished writing the post, I couldn't believe what my fingers had typed. I just committed myself to writing for 30 days to bring awareness to dystonia. WHAT?!! I had barely talked about dystonia in the past 9 years and I was going to write about it for 30 days straight?! What was God doing?!!! Then I went one step further and posted the link on Facebook. I secretly hoped it would get lost in the Facebook feed and no one would see it or comment on it. But then, you did. And I was stuck. :) I knew I had to do it, whether I was feeling like it or not - every day.

I'm not going to lie, it's been a struggle for me to write every day about dystonia. Some days I just didn't want to even think about it, much less talk about it. Other days, I couldn't come up with one single idea to write about. But, I prayed and God always gave me something to blog about. Some posts are much better than others, but all posts were prayed over!

I have talked to more people about dystonia in the past 30 days than I have in the past 9 years. I've been more open about it and more accepting of it in these past 30 days than I have been in the last 9 years. And I owe that to you and to God. Those who have read, those who have commented, those who have "liked" my Facebook posts on it - it's all given me courage. You have given me courage. God gives me courage. As I said in my post yesterday, I don't like showing my weaknesses (even when they are obvious!), but through these past 30 days, I have grown so much more courageous and that's due partly to you, but mostly to God. I felt Him saying that now was the time for me to step up, step out, and be bold. I felt Him urging me to open up and let people in. I have a hard time with that sometimes. :) 2 Timothy 1:7 says " For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline." I know the Lord gave me courage and power and love and self discipline to write about dystonia.

So, I just want to say from the bottom of my heart, thank you for encouraging me, for loving me and for accepting me for who I am, dystonia and all! My life is sweet because you are in it!

To end this 30 day awareness PSA for dystonia, I thought I'd share a video of me walking UNASSISTED on the beach. The video (taken by my Dad) was filmed this year in May when we went on vacation. I shared it on Facebook and was overwhelmed with the response I got. I don't share it (or share it again!) for any reason other than to show the pure joy on my face that for one small moment in time, God allowed me to experience life again like it was before dystonia. I hope you enjoy it. Thank you again for reading and (hopefully!) learning a little more about dystonia. Who knows what my next blog posts will be about. I guess you'll just have to stay tuned!

video

Monday, September 29, 2014

Day 29 - Dystonia and My Left Side

Today I realized that while I have alluded to the fact that I have other physical problems because of dystonia, other than my leg and foot, I've never really gone in-depth with what they are. So I thought I'd remedy that on the next to last day of this 30 days/30 posts about dystonia awareness.

I have what's called adult onset hemi-dystonia. It means I was an adult when the symptoms started and that they are focused on one side of my body. In my case it's my left side. Everything on that side of my body is effected in some way. This means, eye, neck, arm, hand, fingers, back, leg, foot and toes - everything. :) It's kind of scary when I actually put that into words and think about it! Thankfully though, most of my symptoms are pretty mild excluding the leg and foot, but even those are pretty tame when I compare them to what I find on the Internet!!

I'll let you in on a secret. If you asked me to flex my arm muscles, I can do it on the right side, but I can't on the left. Not at all. I can form the fist and put my arms up in the "flex your muscle" stance, but for the life of me, I can not flex that muscle. No amount of willing myself to do it can get it done.

Ask me to hold anything heavy in my left arm and hand and I struggle. When trying to explain this to people, I use the example of getting a gallon of milk out of the refrigerator. I can do it with my left hand, but it, along with my arm goes limp and it's very hard to keep my grip. So, I just thank the Lord that I'm right handed!

I also can't type like everyone else. I use my right hand for most of the typing. I've been doing it for so long, it doesn't even phase me any more, but if you were to watch me type, you'd notice that I don't use my left hand all that much.

I'm very thankful that I have an automatic car, because I think it would be very hard for me to coordinate my foot enough to work a manual.

When asked to jump on my left foot (don't laugh, neurologists make you do all kinds of fun stuff - ha!), I can't. I can't even begin to think how to do it. I can't explain it other than I just can't do it. I can however jump on my right foot without any problem.

All the stuff I could do as a child like somersaults and cartwheels and skipping - I can't do anymore. I don't have the least bit of idea how to even begin to do those actions anymore (and don't say it's because I'm old!!).

This is silly, but dystonia is to blame for me being unable to wink with my left eye. I have no idea how to do it. I just can't get my brain to cooperate with my muscles. :)

All I can say is that the signals from my brain just really don't like the left side of my body for some reason! It is what it is and I am so thankful that the right side of my body compensates as much as it does for the things the left side can't or won't do! God has made our physical body to be amazing!

I can tell that there is something wrong with my body. I can tell that my left side doesn't respond as well as my right, that I can't do with my left what I can do with my right. Whether it's noticeable or not, I can tell that there is a difference between my sides. But at the same time, I'm coming (although rather slowly!) to the conclusion that no matter what, God still thinks I'm beautiful.

It's kind of embarrassing for me to tell you all that I can't do, especially the stuff you wouldn't necessarily even have to know! I'm definitely not doing it for sympathy. I have been, by far, exceedingly blessed in life! I'm telling it as fact only, just so that you know what the condition does - at least to me. There are other cases, much worse cases than mine. Some people develop a stutter because of how dystonia effects their vocal cords. Others go virtually blind because they can not stop blinking enough to see. Still others are wheelchair bound or live in constant pain. So knowing all of that, I considered myself very blessed indeed!

God's teaching me to come out of my shell a little bit more - to be bolder and braver. I don't necessarily like sharing my weaknesses with everyone, but the Lord does say that in our weakness He is made strong. So, I hope that through my weaknesses God's light will shine.

Sunday, September 28, 2014

Day 28 - Dystonia and a Woman Named Ruth

Yesterday I met a woman named Ruth at the grocery store. I would guess her age to mid-80's. She asked if I had ever had the flavor of ice cream she had just put in her cart. It was a cherry cordial and looked delicious, but I had to tell her that I had never tasted it before. She was a sweet woman and we got to talking. She said that she had been having health problems and she couldn't gain any weight (she was very thin), which is why she was buying the ice cream. She and I talked for a few more minutes and she said that she had problems getting around. She told me that she used to hike all the time in the Smoky Mountains, but now she had to use assistance to just get around her house. I asked her if she wanted to know a secret. She said yes and I told her that I too have to use assistance to get around (I was using a cart to hold on to, so no walker was seen). I'm not sure exactly what she thought about that, other than she said that I was so young (that made me happy!) to be having these problems. I told her that I had just been to another store where I had circled the parking lot for what seemed like 10 minutes, just so that I could find a space with a cart next to it. She said she does the same thing!! We commiserated over running into things in our houses and just not being able to get around like we would like to. At the end of our conversation she said that she was so thankful to have talked with someone who understood exactly what she was going through (with the walking issues). I told her my name and she told me hers.

I haven't been able to stop thinking about Ruth since meeting her. She looked so sad to me, which in turn made me sad. But, I thank the Lord for letting me meet her. It was a moment for me to get out of my skin, get out from underneath my own problems and focus on someone else. I don't think Ruth will ever know how much our 10 minute conversation meant to me. It just goes to show you that God puts people in our path to strengthen us, to encourage us and to bless us.

It's moments like meeting Ruth, that make me thankful that God knows what He is doing. I very much dislike dystonia. I wish I didn't have it. But, through it He is teaching me so much. He's guiding me and upholding me and He's showing me that life goes on. In the words of an Amy Grant song "you just can't lay down and die. You've got to remember you're not alone in this world." Thank you Jesus, that I am not alone in this world and may I shine your light to others so that they too know that they are not alone.

So, if you think about it, please say a little prayer for Ruth. Pray that she will know that God loves her and watches over her and knows her every need. I hope that in some way Ruth knows what a blessing she was to me and that I'm praying for her.

Saturday, September 27, 2014

Day 27 - Dystonia and Beautiful Feet

In the physical sense of the word, I do not think I have very beautiful feet. Dystonia has taken its toll on them. However, I am blessed to have two feet and they are beautiful to me because they are beautiful to God.

All my life I have loved this Bible verse: And how can anyone preach unless they are sent? As it is written: “How beautiful are the feet of those who bring good news!” Romans 10:15.

My fascination with this Bible verse came as a child. It happened because Sandi Patty wrote a children's song called "Beautiful Feet" and I still get the chorus stuck in my head every once in a while. :) It's a catchy tune, what can I say?!

But now as an adult, this verse has become even more meaningful to me because of my physical problems. Dystonia is neurological, but it manifests itself physically in my feet. Actually, just my foot. OK, if we're getting technical it effects the entire left side of my body, including my hand and arm. But my most profound symptoms are with my leg and foot.

I've been debating if I should post pictures of my feet to show how dystonia effects them. I've decided I'll be brave and do it. I'm sorry for those that don't like pictures of feet. :) I don't really like people looking at my feet, but to show what dystonia does, you have to see them. This morning was the perfect time to take pictures, because dystonia was doing its thing. So here you go...my feet in all their glory:

And there you have it. I've let you into my world just a little bit more. :) You can now say you've seen my bare feet.

What can I say? I love my feet. No, they are not beautiful in the world's view. No, they don't work as well as most peoples do, but they are MY feet given to me by MY God and He wants me to use them to bring His Word to people all over the world. Dystonia can't take that away!! Dystonia may have altered my ability to use my feet perfectly, but I still have feet with which to praise the Lord. And as Sandi Patty said in her song:

"Feet climb mountains, feet climb stairs. Some wear shoes, and so go bare! There are feet of every shape and every size, but when feet run with the news: Jesus loves me and loves you, Then no matter what they look like - realize… Beautiful feet, Beautiful feet, Beautiful, beautiful feet!"

Friday, September 26, 2014

Day 26 - Dystonia and a Dream + Taylor Swift

Last night, I had the wildest dream and it all revolved around my walker. :) Of all the millions of things I could dream about, and I dream about that! Thankfully, this is the first time that's ever happened.

The funny thing is, I wasn't even using the walker in my dream. :)

I dreamed that my walker was being used in a video - a cheerleading video at that!! What in the world?!! I don't know if I was back at my old high school or what, but my walker was definitely being used in a cheer routine. And the routine was being filmed. I knew it was MY walker because of the cherries on the seat padding (which is the case in real life). At first (in the dream) I was stunned that my walker was the center of attention and then I was mad and I went around to all these people to see who was behind all of it. But I ended up being OK with them using it in the routine. The end. I woke up, or I just don't remember the rest. :) Either way, it ended there.

It took me a lot longer this morning to make my bed because my blankets were all intertwined with each other and all out of sorts. I kind of wonder if I was doing cheer moves in my sleep?! My college roommate once told me that she thought I wrestled in my sleep, so it's feasible that I could have been doing cheer moves, although in real life, I've never been a cheerleader.

I've been trying to figure out where the dream came from. :) Was is something that I ate? No. After pondering it all day, I think I figured it out! It's all Taylor Swift's fault. :) I love, love, love her song "Shake It Off". But let's be honest, I love all Taylor Swift's songs. Anyway, in the music video for "Shake It Off", Taylor plays a cheerleader in one of the scenes and even though I wasn't watching the video last night, I had the song on my mind and my subconscious must have been thinking about the video too.

Dystonia has made its presence known the past couple of days just a little more than usual. I think it might be the changing of the seasons. But in all honesty, I don't know why some days I'm good and some days I can't stop tripping or slipping or just having an "off" day. So, to cheer myself up, I've been listening to "Shake It Off". It's done the job and obviously a little bit more! It's kind of funny that the song that can get me in a good mood is titled "Shake It Off" when what I'm dealing with revolves around my mind wanting my body to move fast, but my feet just not cooperating. My brain wants to do one thing, but my body does another. So, I just "Shake It Off" and move on. :)

Thursday, September 25, 2014

Day 25 - Dystonia and Life Redirected

My life was not supposed to include dystonia. I had my life all figured out. I was going to get married and have 5 kids by the time I was 30. That was going to be my life.

But then, God shook things up a bit. :)
He always does, doesn't He?!
Who am I to say that my life was not supposed to have dystonia in it? My life is not my life, it is God's and He can very well do with it as He pleases!

So, instead of a husband and 5 kids, I have a dream job and dystonia. Would I love to be married and have 5 kids?! You betcha, I would!!! But - at least at this time - that's not God's plan for me. Am I so very, very thankful for the wonderful things He has blessed me with, including my dream job? You betcha!!! His plan for me is__________________________. I don't know. :) That's up to Him. I do know that I have dystonia and for some reason He allowed me to have it. I dislike it, but what's not to say that it's going to turn into something so beautiful that I couldn't even begin to imagine it?

This is my life, redirected. I thought I was going one way, but God knew otherwise. The Author of Life Himself is the director and author of my life. Dystonia is not my life, it's a part of my life. I believe God will use it to bring glory to Himself.

The reason I have dystonia may only lie in the simple fact that we live in a sin filled world, but I'd be lying if I didn't say I KNOW He's right there in the middle of it and He knows my every need. God is God and I am not. That's all I have to remember. God's writing my story, dystonia and all.

Wednesday, September 24, 2014

Day 24 - Dystonia and Being Tough

I'll be the first to admit that I am not tough. I never have been. I cry at the drop of hat, get my feelings hurt easily and am generally just not what the world defines as tough.

And yet, I am.
I am tough because God makes me tough when I need to be.

My dad once told me in the beginning of my dystonia journey that he believed that I was tougher than I thought I was. I'm beginning to think he may be right. ;) However, I know I am not tough on my own. I am tough because of the Lord. For when I am weak, He is strong. When I don't think I can do something, He is there to give me a push. :) And, if I stumble or fall, He's there to pick me up.

If I may be so bold, I think God is using dystonia to make me tough. I know that He uses everything for His good. I hate dystonia, but at the same time, I feel like I'm being refined by it. Not defined, but refined. God's using it to make me tough. To make me bold. To make me courageous. I have had to do so many things outside of my comfort zone because of it.

I've had to ask for help.
I've had to be humble.
I've had to put away my pride.
I've had to speak up.

All these things and more, He is using to mold me into the person He wants me to be.
Yes, dystonia is what it is, but God is using it to show me, that I am tougher than I ever thought I was and that I am important to Him.

To be tough to me, means to be strong in the Lord. I don't want people to look at me and say "oh poor her, she's so weak". I want them to say, "Look at her, she's so tough! Where does she get her strength from?" For then I can say, "My strength comes from the Lord. It is He who makes me tough. It is He who sees me through."




Tuesday, September 23, 2014

Day 23 - Dystonia and Changing Seasons

Happy Fall, ya'll!! Fall is one of my favorite seasons (the other being summer!), especially living here in East Tennessee. God lets His paintbrush loose. His presence is seen all around and especially in the spectacular beauty of the mountains. It's truly a site to behold. I'm talking about fall because of course it's the first full day of it, but also because it got me thinking about how the weather and the seasons changing have a great effect on my dystonia symptoms.

I'm not sure if what I'm going to say is scientific in the least bit, but it is how my body reacts. The colder the weather, the worse I walk. The warmer the weather, the more relaxed my muscles are. I get stiffer in colder weather and moving in general is harder for me in the winter months as opposed to the warmer summer months. I trip more often and have more accidents. This isn't to say that I don't still have great days in the winter and horrible, no good days in the summer, but I do see a pattern. :)

I know some of it may be psychosomatic too. If it's raining and leaves are all over the ground, I think to myself, "I'm probably going to slip". Or if the ground is iced over, "I'm probably going to fall". I see how I psych myself out sometimes! But on the other hand, I really do have a harder time controlling spasms and keeping myself from tripping and falling when the weather turns cold. I don't know why that is - it's a mystery to me. But, I do love summer and fall. They are my most favorite seasons! So, I'm relishing in them while I can. :)

I'm southern in my soul and I find it kind of charming that my body also seems to think the same way! My body and soul like warm weather. On that front, I'm sad to see summer go, but fall is just as wonderful and living in East Tennessee it's still warm enough too! So again, I say, Happy Fall, Ya'll and here's to NO falls for me (or anyone else!) this season!!
 
To usher Fall in, I took this picture today of the lake at work:

Monday, September 22, 2014

Day 22 - Dystonia and Pain

I am very, very blessed because when it comes to pain and dystonia, mine is very minimal compared to what I've heard others talk about. Pain with dystonia comes in different forms (at least for me!). There are at least three kinds that I've experienced and I thought I'd blog about that tonight. It doesn't mean everyone with dystonia has this same kind of pain and it doesn't mean others with dystonia don't have a lot more pain than I'll describe. This is just in relationship to me. :)

There is pain that comes from the twisting motions dystonia conducts on the body. Once again, I am forever thankful that I don't have the sort of twisting and contorted limbs that I have seen when I Google dystonia. If I'm ever having a bad day, all I have to do is look to the Internet to get me out of my funk because some of the pictures and videos I've seen are horrific and I can only begin to imagine the sort of pain those people are in. I am blessed that medication seems to keep my spasms and contortions to a minimum. I can tell when the medication is starting to wear off though, because that's when the spasms start up and the twitching and twisting get worse. It's definitely no walk in the park and I have the utmost compassion for people who experience this much worse than I do.

There is also pain that comes from falling. I fall a lot as I eluded to in a previous post. I get scraped, bloodied and bruised so much that now I have permanent bruises on my knees. I've thought about buying stock in Band-Aid. :) Not only do I fall, but I trip all the time as well. I also end up getting sore. That usually comes the day after I've fallen. Even though my falls include bloody knees or elbows, I am blessed that to date, I've not broken any bones or done anything that couldn't be fixed with a wet washcloth and Band-Aids. Hey, I have to find the silver lining somewhere!

And finally, there is emotional pain. I think this is the pain that I suffer from most of all! If you haven't gathered yet from reading earlier posts, I'm kind of sensitive. :) Believe me, I've tried telling myself to be less sensitive, to not cry, to not get my feelings hurt, to not be embarrassed and yes, sometimes it works, but only sometimes! Most of the times I am too sensitive, I do cry, I do get my feelings hurt and I do get embarrassed. I guess that's just life! I deal with it the best I can.

Pain is pain and sometimes there is nothing anyone can do about it. Pain is part of being human. Pain will always be there. But as sure as pain is, comfort is just as sure. There might not be a soul on earth you can take away every pain, but there sure is a GOD above who does. He's the only source of comfort that is truly effective and He's the only one that can truly wipe every tear and pain away. So, I put my faith in Him. I'm not perfect with this and sometimes the tears, the embarrassment and the pain are overwhelming, but He is ALWAYS there and ALWAYS faithful.

Sunday, September 21, 2014

Day 21 - Dystonia and Pre and Post Thinking

Do you have an event in your life that you always go back to and gage time on? Like before and after? I sometimes think mine is dystonia. Remembering events comes with the added thought of "Oh that was before dystonia" or "That was after dystonia". Take for example my Uncle David's wedding in New York. I remember that as a "pre-dystonia" event, while my brother Stanton's wedding also in New York is remembered as a "post-dystonia" event. Everything seems to be gaged on that now. I remember vacations pre and post. Pre, I was able to run, jump and play, while post was spent looking for a handicap accessible beach. I always took for granted walking across a parking lot. I didn't know at the time that I was taking advantage of it, but I remember distinctly being in the neurologists office and looking out the window at a guy walking across the parking lot and thinking to myself, "I wonder if he knows how great he has it, just to be walking unassisted?".

I must say though that wonderful things have happened to me both pre-dystonia and post-dystonia. Just because you're diagnosed with something doesn't mean life stops. It's definitely altered, but not necessarily over. I kind of wonder if God is using this dystonia to bring me out of my shell. I've always been shy, reserved and quiet in public. However, post dystonia, I've had to speak up. I've had to ask for help. I've had to overcome embarrassment and put away pride. I've had to be more of an extrovert.

I believe God works everything together for His good. Therefore, I believe that He can and has and will continue to use dystonia for my good. Some days are incredibly rough: I scream and cry and get mad and frustrated and want my old life, pre-dystonia back. But then God shows me that He is woven into my dystonia story. He is always there and always faithful. He was there pre-dystonia and He's here post-dystonia and I'm learning to accept that He knows what's best.

Saturday, September 20, 2014

Day 20 - Dystonia and Having Fun

As I write this, I have just gotten home from a fun-filled, jammed-packed day. I am exhausted (but in a good way)!!! I live 24/7 with dystonia, but that doesn't mean that I can't have days like today where it was put on the back burner. Oh, I could tell it was there, I just didn't give it any credence. I do wonder though if having it/dealing with it does contribute to how exhausted I get after events like today. But, I don't care...today was fun and that's all there is to it. :)

I realized earlier in the week that I had quadruple booked myself for different things going on today: I had committed myself to working at UT (University of Tennessee) hospital from 1-7pm. I had been invited to a cook-out, an Oktoberfest and our church had its fall festival. While, I would have loved to do all of those things, I ended up only doing two. I had signed up to work at UT months before anything else came up on my calendar, so I knew I would keep that appointment (plus, it didn't hurt that I got paid!). My church's fall festival is near and dear to my heart. I absolutely love it and knew that I wanted to participate in it any way I could. That meant I had to miss the cook-out and the Oktoberfest. I am so sorry Josh, Sarah, Brian and Whitney!! The church's fall festival was from 10am-2pm and I had to be at UT hospital from 1-7pm.

The fall festival was awesome!! I had so much fun. Because of my dystonia, I can't get around all that well, so last year I was given the perfect job for me: driving the riding lawnmower-led train!!! This year, I got to continue the tradition. I can't tell you how much fun I have doing this. It's simply one of the greatest things. The kids LOVE it!!! I was only bummed that I couldn't stay the entire time. BUT - I did get 2 and 1/2 hours and 3 miles of driving in. Yes, only 3 miles in 2 and 1/2 hours :) I love seeing the smile on the kids' faces when they are riding the train. It melted my heart too when my friend, Carrie told me that her little girl, Brennan, got giddy with excitement when she saw I was the one driving the train. I love that little girl (and her Mom, Dad and siblings too!). My friend, Gail introduced me to a friend of hers from Florida with whom she had shared my blog. Her friend said she enjoyed reading it. And then Larry came up to me and said that he also reads this blog and then passes it on to his wife to read. I really had NO IDEA people actually read what I write. It makes me so happy - thank you all!!

Here's the only picture I got today - it's terrible :) But oh well, it'll do.

So after my friend, Tina graciously took over my driving-the-train duties, I left for my "job" at UT Hospital. It's not really a job, it's more like I get paid to have fun. I "patient act". Well, that's what I call it. :) Basically, physicians come and take re-certification tests. There's a written part and then there's the practical part. This is where I come in. The doctors and nurses giving the exams ask people to come in and act like patients so that these doctors can visualize what they are having to do. It's all trauma situations. Today, I was a 19 year old male (haha- that was changed to female!) who had a head on collision and had been trapped in my car for 40 minutes before being sent to a rural hospital where they had to access me and then transfer me to a trauma 1 hospital for further treatment. We (the actors) get to wear scrubs and get "made-up" with all of our wounds. By the time that the day is done, I know my situation so well that I can tell if someone passed or failed the exam.


I'm teamed up with a doctor who is the one giving the exam. I was given a cool doctor to work with. He's a 2nd year resident in general surgery. He and I got along really well. In between the testing, we got to talk. I told him about dystonia (which he had heard of!) and he told me about his 5 month old baby girl. He was a lot of fun to talk to and kind of reminded me (looks-wise) of the actor, Zach Gilford who played Matt Saracen in the TV show Friday Night Lights.

The routine for the afternoon was that we had two practice rounds where two doctors came in and were able to practice the exam; with one being the primary doctor and the other observing and giving advice. Then we had two rounds of legitimate test takers, with one test taker in the room per time. We had a total of 4 practice rounds and 4 test taking rounds, each lasting about 10-15 minutes on average. I think each doctor was actually given around 30 minutes for the test taking, but most usually finished way before that. I had a blast acting! But, I also noticed that my dystonia flared up. I was supposed to be completely still, but my foot had other plans. Thankfully, no one noticed (or if they did, they didn't say anything!) The last time I did this patient acting, one of the doctors taking the exam noticed and said something and the doctor giving the exam had to tell him that wasn't part of the exam ;) I told him, it was my own issue, not the "acting patient's" issue. ;) So, it's always there - this dystonia - lurking.

Because of all the events today, I (unfortunately) got off my regular medication schedule. I usually take medicine first thing when I get up in the morning, around 11 am, around 3pm and then again right before I go to bed. Well, today, with everything going on, I took it when I got up but then didn't get to take it again until 1pm, and then again at 6:30pm. But, thankfully, symptoms weren't too, too bad.

So, now I'm home and I'm EXHAUSTED!!! I wouldn't have traded any of it though. Sometimes it's good for me to get "out of myself" and do fun things despite my condition. I am SO grateful that I am able to do things despite dystonia. I may have to modify how I do things, but I still get to have fun and that's all that really matters! I hope everyone else had a wonderful day as well.

Friday, September 19, 2014

Day 19 - Dystonia and Emotions

To say that I am an emotional person would be the understatement of the year! Just ask my family and close friends. :) Dystonia has only heightened those emotions.

Unfortunately, I'm not one of those people who when asked "why me?", responds with a "why not me?" That, my friends couldn't be further from my personality. I'm no martyr to this condition and I'm nowhere near being a saint. I ask all the time, "why me?". And, if that makes me a bad or selfish person, then so be it. I cry. I get mad. I yell. I get SO frustrated. And yes, I'd have every one of those emotions even if I didn't have dystonia, but to have them also as a reaction to dystonia makes me even more frustrated, mad and sad. It's a circle of emotions!

Sometimes I may portray that I have it all together or that dystonia does not bother me, but rest assured that is FAR from the truth. As I've mentioned in the past, I get highly embarrassed by dystonia and having to use the walker. This (thankfully!) does not happen every day, but rest assured that when I think I'm past being embarrassed, that's the day I am. I have to think that that is God's way of keeping me humble. Grant it, He didn't give me dystonia, but He does use it to keep me grounded. :) When I start acting all "high and mighty" like I've got everything figured out and I can live with dystonia, He likes to remind me, I'm not at all in control or in charge!!

You know the 5 stages of grief, right? They are denial, anger, bargaining, depression and acceptance. Well, I've experienced every one of them in this journey so far with dystonia. And as I told a new friend today, I sometimes revisit different stages at different times (I wouldn't want them to feel neglected or anything!).


1. Denial - I denied that I had anything wrong with me. I thought that if I just gave it half a second, I could "will" myself into not tripping or falling. It took my family seeing that something wasn't quite right to get me to even admit that there might be something wrong and maybe I should go see a doctor. You think I may be just a little stubborn?! I think you'd be right :)

2. Anger - Boy did I experience this and boy do I still experience this! I was furious that I "got" dystonia. I was 25 for heaven's sake. All my friends were starting new jobs (grant it, I did get to experience this! Thank you, Lord!), getting married and having babies and here I was just trying to get from point A to point B without falling. You better believe I was angry. My friends were "living up" their 20's, while I was just trying to survive mine! Every time I fall, I get angry. I know this probably isn't right, but it's the emotion I get. I can't stand falling!!!

3. Bargaining - Oh, did I bargain with God!! "If I do this, God, will you do that?" "If I live my life like this, will you bless me with that?" "If I read my Bible and pray every night, will you heal me?" It's kind of embarrassing, this bargaining, but it did and does go on, I'm ashamed to say. I know this stage all too well!!

4. Depression - OK, I'll admit that I'm my mom and dad's melancholy child. I've never been Ms. Happy-Go-Lucky. So, I should of known that depression would hit me hard. I recoiled from whatever little social activities I did have going on and I retreated to the confines of my house. I ate to mask emotions. I gained weight. I was definitely feeling sorry for myself. I would (and still do) think about all the "what-ifs" and I would get myself all in a tizzy over things. I self diagnosed myself with every deadly neurological disease out there. Thinking back, maybe watching House, M.D. wasn't such a great idea! I had every disease they talked about on the show whether it was neurological or not ;)

5. Acceptance - I'm not completely through this stage yet. I'm not sure I'll ever be. I haven't totally accepted dystonia, but there are parts about it that I have accepted. I told a new friend today that 6-7 years ago as I was laying on my bed crying my eyes out and wondering how I would ever live every day of my life having to use a walker, that I would have NEVER in a million years, thought that I would be trying to cheer her up today. She was recently diagnosed with dystonia. I couldn't believe that I was able to tell her that it does get better. That God is good. My God is faithful. I didn't think I would be able to live using a walker every day, but here it is 7 years later and I've survived!! There have been days when I've hardly thought about the fact that I use a walker. Shall I even go so far as to say that I have thrived?! YES!!! God is GOOD!!!


I have to say something else. Again, this is NOT what I thought I would be saying years after a dystonia diagnosis, but I do feel led by the Lord to say it: If dystonia is the WORST thing that happens to me in this life, then I consider myself HIGHLY blessed. So many people have it so much worse off than me - other chronic diseases, debilitating diseases, cancer, and the list could go on and on and on. And even if there is worse to come, I will still consider myself blessed. Yes, I am blessed! That's the emotion I feel right now and that's the emotion I want to end this post on. I hope you can and do consider yourself blessed as well. We have a God that fights for us, that loves us, that died for us, that rose for us, that defeated death and the cross for us and that watches over us. I am blessed and so are you!

Thursday, September 18, 2014

Day 18 - Dystonia and One of my Favorite Quotes

Today's been quite a busy day! Here it is 10:30 at night and I haven't posted anything on this blog about dystonia yet. I have an hour and half before the day is done, so I better hurry :) I'm not going to say much tonight other than offer you one of my favorite quotes. It comes from the actress Ingrid Bergman. She said:

"I was the shyest human ever invented, but I had a lion inside me that wouldn't shut up!"

That's how I feel about life and about dystonia. I may be shy and at my core an introvert, but I have this lion inside me that's not about to hold back! I've GOT to get the word out about dystonia, because if it's not me, then who? Yes, I still feel embarrassed by it at times and I may be shy about it, but it's what I have. I didn't want it. But, I have it. So, I must not be quiet about it. :)

I've talked to more people about dystonia in the past 18 days than I have in the past 9 years! It's amazing and I thank God that I have gotten to talk about it.

So, thanks for following along. Thanks for all the prayers and all the support. It means the world!

Wednesday, September 17, 2014

Day 17 - Dystonia and Special Services

It's amazing to me the things I "missed" seeing when I was able bodied. There are so many things that are "wrong" with how we're "helping" the handicap society and I had no idea until I myself now have to use the services. I never noticed them before dystonia, but after being diagnosed, well, let's just say, I notice them now ;) Here are a few of the glaring ones that have jumped out at me:

Handicap bathrooms - I can't speak for men's rooms (but I assume they are the same way), however, for ladies rooms, have you ever noticed where the handicap stall is located? At the opposite end from where the door is located! This means, I have to walk even further! Who thought that a good idea?! I understand that a handicap stall is usually a lot bigger than the other stalls (I usually can fit my walker in there with me, with lots of room to spare), however I don't think it's very practical for someone with walking difficulties, or even those in wheelchairs to have to go to the furthest spot from the door to get a stall. Maybe that's just me :)

Handicap parking spaces - Now, I'll grant you, some of these are premium spots, but I've noticed that the majority of them are not. Just like with the bathrooms, the parking spots seem like they couldn't be farther away from the entrances. There are several "regular" spots that are actually closer to the door than most handicap spots. What's with that?! I don't get why handicap spots are relegated to the end of very long ramps. Yes, ramps are good, but they don't have to be very long and the parking spots don't have to be miles away from the entrance. Again, just my opinion, but I notice this now!

Elevators - Have you ever walked into a store and seen right away that there are stairs or an escalator in plain view, but you have to walk a mile to the back of the store to find an elevator? Not all stores are like this, but it is frustrating when I have to do more walking to find an elevator then I would have had to do if I just tried to do the stairs.

There are a lot more situations I could talk about, but I won't bore you with them. I just thought if I had never thought about the three things above when I was able bodied, that you who are reading may never have thought about them either :)

A co-worker said that he thought the head of any company's special services should be someone who has to use them himself/herself. That way, he/she could see things from the disabled's point of view and be able to help more than hinder when it comes to making arrangements for them. I have to agree with him. I think it would make all the difference!

Finally, even though it might sound like I am complaining in this post, I am not!! :) I am so, very, very, very grateful for handicap bathrooms, handicap parking spots, elevators and everything else! I couldn't imagine, if we didn't have them, what life would be like. So please don't read this post the wrong way! I just have a little different view now then I did before dystonia. However, I am superbly grateful for everything :)

Tuesday, September 16, 2014

Day 16 - Dystonia and House, M.D. (the TV show)

For the past few days, I've talked about more serious things in regards to dystonia, so for this post I'm lightening the mood a bit by talking about one of my favorite things: TV!!

I loved the show House, M.D. I pretty much like any medical show (I know, I'm weird like that!), but for this blog post, I'm talking about House, M.D. I would watch the show every week without fail. It was "appointment TV" for me! You may be wondering why I'm talking about a TV show in a post about dystonia. Well, here's your little fun fact for the day: dystonia made it into an episode of House, M.D.! Yep - Season 3 episode #15 titled "Half-Wit" (what a name!!). It aired in 2007 - three years before I got my diagnosis. I didn't catch that it talked about dystonia the first time I watched it (probably because I didn't know what dystonia was, nor was I interested in it), but it's definitely talked about. Now grant it, it wasn't the grand "mystery illness" that Dr. House diagnosed in the end of the episode, but it is mentioned. Pretty cool :) If you own the series and didn't catch it, go back and watch it - it's the episode that stars Dave Matthews.

I'm so happy dystonia was interesting enough to make it into an episode of House, M.D. and that it got some "air" time. Now, I'm trying to give it some "web" time this month for Dystonia Awareness Month :)

Monday, September 15, 2014

Day 15 - Dystonia and Treatments

Today, I thought I would talk a little bit about some of the treatments that are out there for dystonia and also about the treatments I've tried or am currently on. This is in no way to say that what I'm doing is the only way to go nor am I trying to give anyone advice, this is just what I've tried, what's worked for me, what hasn't and other options I've heard about. (If you couldn't tell, that was my disclaimer that I'm not a doctor!)

Botox - yes, the same Botox that Hollywood stars get to melt their wrinkles away also helps in treating dystonia. It's because Botox temporarily paralyzes the muscles it's injected into, which helps greatly to reduce the spasms that dystonia creates. This was actually the first treatment I had. Unfortunately for me, it didn't work. After several injections, my (former) doctor requested a blood test to see if I had an antibody towards it. It came back positive. A couple of years later, I learned from another neurologist that my first neurologist probably gave me the antibody by injecting Botox into me so often (it's supposed to be given every 3-6 months. I was getting it every 3 weeks because the neurologist kept thinking he hadn't injected the right muscle(s)). So, maybe for a lot people, Botox will work, but it didn't for me.

Medication - there are several different medications that can be used to treat dystonia. I tried several before finally finding the right one for me. And even after finding it, it took a little more time to get the dosing right. Medication has definitely been a God-send for me. The downside is that I have to take it four times a day (because it wears off). That's sort of a drag, but hey, if that's what it takes, that's what it takes. I can tell when it's starting to wear off. It's a Parkinson's drug, so just like with that disease, when it starts to wear off, I start having spasms again and more difficulty walking.

Physical therapy - I have done this several times over the years, usually for 6 months at a time. I've even done water therapy, which I absolutely love :) For me though, after a good stint, I hit a brick wall in which I don't get any better. It's highly frustrating!! However, I know that the point of physical therapy (at least for me) is to keep me from losing any more function and to strengthen what I do have, so I continue it (although, not on any regular time table).

Orthotics - yes, I have tried them, but in all honesty, I couldn't fall right in them - haha! I was actually afraid of doing more harm to myself wearing them then not. I shouldn't say anything bad about orthotics though because my cousin makes them (actually, he makes prosthetics) :) I really don't have anything against them, they just didn't work that well for me. Like I said, when I did fall, it was in an even more awkward way than usual because the orthotic kept my ankle and foot from bending. Maybe I should get falling lessons from someone :) One of these days, I may try it again and it may be awesome, but for the time being, I'm not using one.

Deep brain stimulation - No, I have not done this! It does intrigue me though. It hasn't been officially recognized as a treatment for dystonia, like it has been for Parkinson's. If I hadn't already been through two unnecessary brain surgeries already (I make that sound so dramatic! It was actually just to get a shunt put in and then when the first shunt failed, to get it taken out and a new one put it - it's probably the "easiest" of brain surgeries!), I may be quicker to jump at this, but having been through those and lived through the after effects, I'll wait until there's more research done on it and until more people have gone through it. Yes - I'll let someone else be the guinea pig :)

I think that's enough for one post! I'm very blessed to have been given the opportunity to try several different treatments and to also be given control over what I do and don't want to do. For the time being, I'm fine taking medicine. I'm willing to admit that I subscribed to "Neurology Now" magazine and I'm always looking for new treatments. Who knows, maybe I'll even do deep brain stimulation at some point down the line! I am thankful though for doctors and scientists and researchers and people with incredible knowledge about the brain, for I truly believe that God can use them to come up with a "perfect" treatment or cure for dystonia!

Sunday, September 14, 2014

Day 14 - Dystonia and Falling

Probably one of the greatest things I dislike about dystonia is the falling. I fall a lot! Although, I must admit, I haven't fallen in awhile (which probably means I'll fall tomorrow - ha!) It's the one "symptom" that has always been there. It showed up in the beginning stages of dystonia and has been there ever since. It used to be, I would fall out of nowhere - meaning, I had no prior indication that I was going to fall. Now, I can sometimes pinpoint it. There's the "pre-fall" :) where I can feel my muscles tightening and am pretty sure it's coming up. But sometimes it still surprises me - haha!! I have permanent marks on my knees where I've landed - and I always seem to fall the same way (in the same position). It's just a normal part of life now, I guess you could say. It never gets any easier though. I've been super blessed to NOT have hurt myself other than bloody knees and a bruised ego. No broken hips or broken anything thankfully. I know this could change, but for now, I'm very thankful I've not seriously injured myself. I've even fallen while using the walker and it takes real talent to do that! But, that's exactly why I use a walker - to minimize the amount of falls. I'd probably fall a lot more if I didn't have it, so looking at it from that perspective, I'm thankful for the walker. Falling is a lot less likely when I'm walking on carpet or sand, but it still happens occasionally. I was at my parents house this afternoon and it amazed me how well I could walk on their carpet and I wasn't using a cane or a walker!! But then, I went to leave and walked out on the driveway by myself and was sure I was going to fall. BUT, God was good and I didn't :) It's a strange beast, this dystonia. I never know what a day will entail. I'm grateful for the days when no falling takes place and on the days it does, I thank God that I am not seriously hurt, or that it wasn't in front of a crowd of people :) Hey, there's always something to be grateful for, right?!

Saturday, September 13, 2014

Day 13 - Dystonia and My Neurologist

As you can tell by the title of this post, today I am talking about my neurologist. It took five years to find him, but looking back, it was worth the wait. There is nothing better when you have a chronic condition then actually finding a doctor that meshes with your personality. I have my friend, Cheryl to thank for this "gift" of a neurologist. And, I do think of him as a gift. Cheryl's a pharmaceutical rep that goes to my church. She has told me that God stirred within her to speak up and tell me (actually my mom and dad first) about Dr. M. The timing was all God. It was five years down the line when I met Dr. M. I had already seen many neurologists before him. But none of them could have prepared me for him.

Dr. M. is young and vibrant. He's got an excellent bedside manner. He's funny and compassionate and super smart. He's patient and he's knowledgeable. He cares about ME and sees beyond the disease. He listens to ME and wants MY input on my condition. He knows that he's "practicing" medicine and that's OK with him. He's willing to admit he doesn't have all the answers and there is no quick fix. He admits that there is so much about the brain that remains to be discovered. He's not pompous. He lets me cry in front of him and he's OK with it. He doesn't wear bow ties. OK, on that last one, he did admit that when he was younger (I'm thinking med school age, because he's not at all old!) he wore them. I got a bad taste in my mouth for bow ties, because every neurologist I saw up until him, wore one and they each had a "I'm the doctor and you're not, so that makes me better than you" personality, which I came to despise! He notices things. He'll come in to the exam room and announce that he saw me (from his office) walking into the exam room and it looked like I was having a good walking day. He noticed when I lost weight (I wasn't expecting him to) and wanted to make sure that it was on purpose and not because of anything else. He teases me about the walker. He makes suggestions on how I should decorate it. In matters of the brain, Dr. M. is exceptional, but what makes him even more exceptional in my book is how he handles matters of the heart. He knows that I struggle with having to use a walker and with dystonia in general, but he gives me hope and there's nothing greater than hope! He's personable and kind. He makes me laugh. He's a doctor, but he's a person too. He's not one to act like he knows it all, and I'm just some dumb girl who can't walk. He's genuine. I may not have the deadliest neurological disease or the most talked about one, or even the most important one, but when I see Dr. M., he makes me feel like I'm his only patient and that I matter.

Dr. M. is one of the greatest blessings I've been given in this journey with dystonia. I know God sent me to him (or him to me) to make the journey just a little easier. He's a breath of fresh air. As I stated in an earlier post, he's a shining light in a (sometimes) dark world of dystonia. I am so very, very thankful for him!

Friday, September 12, 2014

Day 12 - Dystonia and Boasting

For years, I have been highly embarrassed to have dystonia and being honest: I'm still embarrassed. Not so much of having dystonia, but of having to use a walker. However, just within the last week or so, something has been stirring within me. Actually, I don't think it's a "something", I know it's a "Someone". God's urging me to be bold and courageous, to "step up to the plate", to not be a shrinking violet, but to shine like a star for Him. I've spent too many years in the shadows trying to hide. Maybe my greatest testimony will be dealing with dystonia (among other things). Truth be told, I've always wanted to be famous. But, I'm pretty sure, I didn't phrase it right to God, because instead of being a famous movie star, I'm now "famous" for being the girl with the walker - ha! I say all this because I do see myself (unfortunately) likely to boast. I don't want to boast, unless it's boasting in the Lord. My friend, Allie shared with me this week 2 Corinthians 12. I have been mulling over it ever since.

2 Corinthians 12:5(b)-10
"I will not boast about myself, except about my weaknesses. (6) Even if I should choose to boast, I would not be a fool, because I would be speaking the truth. But I refrain, so no one will think more of me than is warranted by what I do or say, (7) or because of these surpassingly great revelations. Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. (8) Three times I pleaded with the Lord to take it away from me. (9) But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.(10) That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Don't get me wrong, I am no Paul! But his words do ring true to me. I have cried out to the Lord to take the dystonia away from me. I am thankful for this "thorn in the flesh", if only because it does keep me humble and it does keep me close to Jesus. I'm always praying! I also do not want to be conceited. I never in a million years thought to boast about my weaknesses. I am too busy trying to cover them up most of the time. But the Lord does say to boast in them that His power may rest on us. His power is made PERFECT in our weaknesses. I just can't get over that - it so awesome!! I keep repeating it to myself. So, in order for HIS power to be made perfect, I must boast about my weakness (the very thing I want to hide).

I was talking to my friend, Savannah yesterday and she was saying that I have a great attitude about things. But don't be deceived, friends. I'm just as likely (even more so) as most to have a bad day. Mom and Dad have always said I'm their melancholic child and it's true! I have a very melancholy personality. I don't always praise Jesus and I don't always act like an inspiration or any of the other words you've used to describe me. Sometimes, I'm just a girl trying to get by in a world that's full of sin. Sometimes, I'm treading water, just hoping to survive :)

However, I do have something "special". I have dystonia. I have this blog. So, in some small way, I hope that me blogging about dystonia and (after this month) random things, that I can be a blessing to someone. I don't feel like I'm that great of a person (in fact, most of the times, it's just the opposite - I know the sins I've committed!), but I hope I can inspire someone, somewhere to live for Jesus.

After all these years (it'll be 10 next year since I started exhibiting symptoms of dystonia), I think God is saying it's time for me to get past the embarrassment stage and move on to the empowering stage. So, that's what I hope to do - I hope to empower others to live for Jesus, let the naysayers be naysayers and in the words of Taylor Swift "Shake it off" and in so doing, I hope to shine like a star for Jesus!

Thursday, September 11, 2014

Day 11 - Dystonia and 9/11

I'm writing on this blog for 30 days about dystonia - to get the word out about it - but today is 9/11 when the world as we knew it stopped 13 years ago. So what does dystonia have to do with 9/11? Well, I started thinking about how I would have gotten out of the World Trade Center if I had been there and had dystonia. Selfish, I know. But, I thank God that I wasn't there. However, that thought led me to think of the people who were there and helped people who had trouble moving, walking or getting around. Today, I'm thinking about those who carried others down flight after flight after flight of stairs, those who risked their life for the well being of their co-worker or even just a stranger next to them. I'm thinking about those who wouldn't, who couldn't leave without helping a disabled co-worker the best they could. What strength they must have had! I wonder if God granted them super-human strength that day? What faith they must have had! You can say it's adrenaline, but for those that descended all those flights of stairs with another human on their back - and never gave up - that's strength only God can give! So, that's what dystonia has to do with 9/11 - it's remembering those who cared enough to help another person get out alive.

Wednesday, September 10, 2014

Day 10 - Dystonia and Being Thankful

I've been thinking I need to list a few things that I am thankful for in regards to dystonia. So here are just a few.

I am thankful for:

- A ranch house. When I bought it almost 10 years ago, I didn't know how big a deal stairs would later be for me. I am SO THANKFUL every room of my house is on one level.

- A car that fits my walker :) Fittingly enough, I own a Honda Fit!

- Awesome insurance. I am so blessed by this.

- That the dystonia is in my left foot and not my right. This is because I can still drive a car. I'm sure I could probably still drive one if I had it in my left, but depending on the severity of it, maybe not. If I could, it would be a lot harder.

- My job. As stated in yesterday's post, I could not have been blessed with a more perfect job for me than the one I have. I am also so very, very thankful for co-workers who see beyond the walker and just see me.

- The ability to live on my own. I hear of so many people that need help and just can't do things on their own and I am very blessed that I can.

- For my Mom and brothers (and Dad too when he's not preaching!) helping me up to communion on Sundays and Wednesdays. I can walk with a cane if I have someone to hold on to as well. The walker isn't always convenient to have with me.

- For my friend, Whitney who retrieved my walker for me last Sunday after church. It was at the back of the room and my mom and brother had left the service for various reasons before it was done, so I had no way of getting to my walker without help or someone retrieving it for me. So Whitney kindly went and got it for me :)

- For a neurologist who is both very bright and has a great bedside manner. You really don't know how thankful I am for this. My neurologist cracks me up every time I go and see him. He's a bright light in sometimes a very dark world.

- For friends like Savannah and Stacy and Frieda and Allie (and others!) who say they can't wait to read my blog. You don't know how much that means. I really didn't think anyone actually read (or more importantly, couldn't wait to read) this blog. I'll be honest, each day, I have NO IDEA what I'm going to write about that day. I pray and let God take over.

- For a co-worker who today asked why I didn't wear stilettos like my mom :) He's met her a couple of times when she's come by the office. I said that I couldn't. I'd fall. He looked at my quizzically and then after a few minutes of banter back and forth said " Oh, duh! Hit me in the back of the head right now!" Why am I thankful for this, you ask? Well because I have been working with this co-worker for 9 (almost 10) years now. He knows that I walk with a walker and he's been through everything with me. But, I realized in that moment, he didn't see me with a walker. He just sees me as me. He had TOTALLY FORGOTTEN that I used a walker to get around, until he turned around and saw me with it. He forgot that I have trouble walking, much less in sky-high stilettos. I loved it!!!!! It totally made my day.

- For family, friends and co-workers who do only see me and not the walker.

- For the ability to have lost weight, kept it off and to exercise. When I had a "real" reason to just give up on getting the weight off (actually, there are no real reasons), I put my mind to it and did it anyway :)

- For having an attitude that says, "If you tell me I can't do something, you better watch out because I'm going to find a way to prove you wrong". I'm kind of stubborn like that.

- For faith in Jesus. He's never left me and He's always got me in the palm of His hand. God's got this and I need only sit back and watch Him work!

And one more for good measure....

- For Wednesday's so I can say, Happy Hump Day and post pictures like this:

Tuesday, September 9, 2014

Day 9 - Dystonia and HGTV Day

I have had an AMAZING day and I can honestly say, having dystonia made it even better. I had to sit back a minute and ponder that. Never in a million billion years would I have thought I would have typed that first sentence, but it's true!!!

I work for an amazing company. I am truly, 100% blessed in that department. I work with outstanding people and at my dream job. Today was pure fun. All day. Amazing fun (even the work part of it!). As you can probably tell from the title of this blog post, I work for HGTV. Actually, I work for its parent company Scripps Networks Interactive. I LOVE my job!!!! I knew from age 13 that I wanted to work here and now, I do :) I am blessed!!!!!!!!!

Today we celebrated HGTV's 20th anniversary. It was a blast. The governor of Tennessee was there as was the mayor of our city. The place was decked out. Hollywood had arrived :) There was going to be an employee event that would take place later in the day. I was ecstatic because some of the stars of HGTV were going to be there. The only problem: dystonia and that darn walker I have to use! But this time, both turned out to be a blessing in disguise. I was contacted the day before about special provisions for those needing assistance to the event. It was going to be a little bit of a walk. I, at first, balked at the idea - I could do it myself! But then, I wised up :) I decided, I was going to embrace my quirks and be humble and ask for help. And help I got! They rolled out the red carpet for me (and I do mean this LITERALLY!!) I had NO clue what was in store for me. I thought I'd just be getting a ride over to the event instead of having to walk. WRONG!

Not only did I get a police escort (I kid you not, although it was actually just a police officer driving a Scripps car with me and some others in it!), but I got inside the building where the festivities were taking place BEFORE anyone else got to go in. I thought that was enough. But then, I started seeing "stars" come in: Genevieve Gorder, Vanilla Ice....and I started snapping pictures:
They decided to get a group picture with all the stars and the Chairman of the Board, President and Chief Executive Officer of our company. I again took pictures and then - well then, came my surprise. I was going to get a group picture with all the stars and with the Chairman and CEO. I felt like royalty. I felt like I was going to cry. What had I done? NOTHING, but have dystonia and walk with a walker.

Something else amazing happened. The Chairman of the Board, President and Chief Executive Officer of Scripps Networks Interactive asked what was wrong with me. I told him it was a neurological disorder called dystonia. His response? "I know what that is! My cousin has it." WHAT?!!!! The Chairman and CEO of my company - a national and international cable company, knows what dystonia is!!! This is amazing. Unbelievable. Astounding. And, completely and totally humbling. He is the kindest and the most sincere person I've ever met at that level of success. I have nothing but the highest praise for him and I am BLESSED beyond measure to work for Scripps Networks Interactive!

So after hob-knobbing with the big wigs of the company and the stars of HGTV, I actually got to meet all the stars one-on-one and get my picture with them! All the employees got to do this. That's how great our company is! So here's the list of stars I got to "rub elbows" with: Chris and Peyton Lambton, JD Scott, Drew Scott, Jonathan Scott, Chip and Joanna Gaines, Scott McGillivray, Nicole Curtis, Genevieve Gorder, David Bromstad, Josh Temple, Anthony Carrino, John Colaneri, and Vanilla Ice (yes, the rapper!). Rick Dees (Top 40, Rick Dees!) was also there (he was Scripps Networks Interactive's Chairman and CEO Ken Lowe's college roommate).

I have to say something about Josh Temple. He is absolutely the funniest guy. He's a charmer :) I had met him earlier in the day, so when I walked up to him on the red carpet later this evening he called me by name. Did you get that? He remembered my name!! How awesome is that? Here's this star of HGTV and he remembered my name. That impressed me to no end. I told a co-worker (who's responsible for booking all these stars to come to events like this) that Josh remembered my name and she said, "well of course he would remember you! It's all in your eyes. You have beautiful eyes." Seriously?! How did I get so blessed to be complimented like that? These people - every single person - from the higher ups in the company, to the stars of HGTV, to my fellow co-workers have completely blessed my socks off!

Another highlight: I had a co-worker (a much-higher-up-the-totem-pole co-worker!) tell me that he thought my charm was my whole package (meaning the dystonia and the walker). He said that I have charm!! So sweet :) And it definitely made this girls day!

All I can say is I'm actually kind of thankful for dystonia today. How is that possible?!! Well, God makes all things possible and He's shown me today that even with dystonia I can hob-knob with stars and I can enjoy life. I got VIP status today because of dystonia. For all of it, I am blessed and so very, very thankful!!!

Monday, September 8, 2014

Day 8 - Dystonia and Walking on Different Surfaces

If you are friends with me on Facebook, you might have seen a video I posted back at the beginning of the summer. It was me walking on the beach with NO ASSISTANCE!! It was freedom. It was awesome. I kind of had an inkling that I might be able to do it, but I wasn't positive until I tried it. This dystonia is weird for me. There are certain surfaces I can walk on and certain ones I can't. I have the hardest time on concrete, tile and hardwood. By far the easiest is sand. :) I can also walk in grass pretty well and my parent's carpet at their house. I mention the carpet because they got new carpet, but got a really thick padding. I never knew what padding in carpet does, but now I do: it lets me walk, cane and walker free!! It's the closest thing to sand that I've walked on. It's amazing.

While some may think that it's all in my head - meaning I can only walk well on sand and carpet because in my head I know if I fall, I won't hurt myself - I know for a fact that it isn't just all in my head :) I still have problems walking even on sand and carpet. That same vacation, where I walked without a cane or walker on the sand - yeah, I fell flat on my face in front of the cutest life guard! It was highly embarrassing. And instead of milking it for all it was worth, I quickly got up and tried not to look him in the eyes when he asked if I was alright ;) Embarrassing!! So....even on my "perfect" surfaces, I have problems - just not as many!

When I started physical therapy, my physical therapist talked to me about proprioception: having an awareness of the position of one's body. It's knowing where your arms and legs are in regard to your own being and to space. My proprioception is off (really! I know you find that hard to believe - ha!). I can't sense where my foot is in relationship to the floor. That's why I'm looking down most of the time when walking. I have to see the floor in order for my foot to touch the floor normally. If not, that's when a spasm takes place and I lose balance. Tile, hardwood and concrete are all smooth surfaces. I don't sense them under my feet as well as I do grass, carpet and sand. I don't really know how I lost my proprioception, but somewhere along the way, I did. If you find it, please return it to me - it's greatly missed!

It amazes me how my body knows what to do. When I first started having symptoms, I instinctively started to walk in the grass instead of on sidewalks. I have no idea why I did this, other than the fact that I knew for some reason it was easier that way and I would prevent myself from getting hurt. I am pretty sure that sand and carpet are my favorite surfaces to walk on because they mold to my feet. They give with my feet (meaning that whatever way my foot lands, they compensate for it and support it). Yes, carpet and sand are definitely my favorite surfaces for walking!

Friends suggested that I either move to the beach or fill my house with sand. While I love walking on the sand, having sand everywhere else is not quite ideal :)

I would like to invent a shoe that gives the sensation of walking on sand. I think that would be totally awesome! Maybe one day you'll see Shoes by Stephanie or something like that and see my one-of-a-kind sand shoe. It'll be all the rage, I guarantee it :)

All in all, I really have no answers as to why I can walk on some surfaces and not others. Sometimes it frustrates me, but most of the time, I know now which surfaces I'm good on and which I am not, so I deal with them as they come up.

Sunday, September 7, 2014

Day 7 - Dystonia and Changing a Light Bulb

Yesterday, one of the light bulbs in my kitchen's overhead light went out. I usually have my dad or one of my brothers change it for me, but the last time they did, it didn't look so hard and I thought I could try to do it on my own.

Let me just say, being able to do it on your own doesn't mean you should do it on your own :) Unless you're planning on blogging about it....

For some reason, I left my walker on the other side of the kitchen (not near me). I didn't think I would need it. Wrong! So there I am, standing in the middle of my kitchen with nothing to balance myself with and I start unscrewing the light fixture. That's when I realized I was in a little bit of trouble. First, my legs and arms were already shaking. I think this was in part because my foot and hand already started cramping up when I raised both my arms above my head and was trying to get the fixture off its base. Then when I got a hold of the fixture, it ended up being a lot heavier then I thought it was going to be and that caused me to shake. If that weren't enough, I realized I didn't have the new light bulb with me. I can only guess my thinking was that I would take the old bulb out first and throw it away and then return and put the new bulb in. It's never as easy as I plan it out to be!

The way that the light fixture works (I found out AFTER I started taking it down!) is that I have to unscrew it, but it only comes down halfway before the piece holding the drawstrings (which are actually threaded through the light fixture) in place stops it from coming all the way off. I know I am not explaining this correctly at all, but you'll just have to trust me. I'm sure it comes completely off, however, it was heavy enough for my arms to start shaking and I didn't think I'd be able to get it all the way off without dropping it myself. I was losing my balance fast.

What's supposed to happen is, I should be able to hold the fixture in one hand and unscrew the light bulb with the other and then replace the light bulb and then bring the fixture back up to the base and screw it back in. However, because of dystonia, my legs and arms cramp up and twitch and twist and I was having major problems staying upright. A normal person would have had no problems with this, but I found myself panicking a little. I felt like either I was going to fall or the fixture was going to fall. If I fell, yes it would hurt, but I wouldn't break anything (hopefully) and I'd be OK. If the fixture fell, it would be a HUGE mess of which I would have to clean up and possibly cut myself on and then I'd have to buy an all new one.

I weighed my options.

Me or the fixture?

Me it was!

I'd take the fall instead of the fixture. I hoped it wasn't going to be me AND the fixture :)

But before I sacrificed myself for the good of the fixture, I tested to see if maybe, just maybe the pull strings would be strong enough to support the fixture for 30 seconds. That's all I needed - 30 seconds. Time enough for me to grab my walker and the new light bulb and finish the task. Please, God, let it hold and don't let it come crashing down.

I lowered my arms all the way and it held. I thought, "this is too good to be true". It's going to hold but as soon as I move it's going to come crashing down and I'm going to fall because I'm already shaky and off balance and having issues. I backed up slowly and made my way to the walker, all the while praying that it would hold. I grabbed the walker and balanced myself again. I got the light bulb and prayed I'd have the strength to hold the light fixture and screw the light bulb back in.

I got back to the fixture and guess what?! IT HELD!!!! It held until I could get it in my hands again!!! Praise Jesus :) So I now had the fixture in my hands and the walker right beside me to steady myself with. I grabbed the light bulb (careful not to lose my balance) and then screwed it in. I brought the light fixture back up to its base and screwed it back in. I did it!!!!!!!!!!!!!!! Well, me and God did it :) Thank you, Jesus for all the help!!

Lesson learned. I'll be contacting Dad or one of my brothers or a friend or a neighbor to be changing that light bulb again. I proved to myself I could do it, but from here on out, I'll let someone help me :)


The infamous light fixture. Sorry. it's kind of a bad picture, but you can get the idea. I'm almost embarrassed to post this picture because I know most (if not all) people would have been able to do it without any problems. But, oh well. Dystonia may make my body twist and twitch, but at least I proved to myself I could change this light bulb!

Saturday, September 6, 2014

Day 6 - Dystonia: Different Kinds

Today's been a busy, fun-filled Saturday. This is the first chance I've had all day to sit down and "write" a blog post. So, since it's late and I'm tired, I'm just going to leave you with this picture describing the different kinds of dystonia.

FYI, I have the generalized dystonia.

Friday, September 5, 2014

Day 5 - Dystonia and Using a Walker

I'm going to come right out and admit: I can't stand having to use a walker. I use it every day, all day, but I still can't stand it! :)

When I first started exhibiting symptoms of dystonia, I had no way of knowing that I would one day have to use a walker to get around. I distinctly remember having the thought that as long as I have the ability to walk, I'd be OK in this life - HA HA HA!!! It's hard to admit that that is what I thought, but it is just that. Looking back, I cringe at it. I cringe, because who am I to say whether I walk or not? Whether I can see? Whether I have good health or not? Isn't that God's business? And doesn't He have the right to give us those blessings or allow them to be taken away so that we may see that we are but dust and to dust we shall return? I'm slowly learning this!!

At the same time though, I am human and being human, I am highly embarrassed having to use a walker. I'm 34, not 94. When I started using it full time I was 28. No matter what anyone says, I don't like being "the girl with the walker" - and yet, I am! It has gotten easier to accept over time. But, then, there are the days when it feels like it's the first time I'm using it and all those feelings come rushing back in of not being good enough, of being disabled, of being embarrassed. I struggle all the time with my feelings on having to use a walker. On one hand I am extremely blessed and grateful that I have it and that I can get by with it. I can live on my own, drive a car, go to work, go to the store, go anywhere I desire and then on the other hand, I'm bitter and mad and sad and angry that I have to use one. Nothing anyone can say or do can or will take those feelings away and I know that. Only God can do that. Only God can give me the grace to accept it, to deal with it, to thrive with it. I have to accept it for what it's worth. But, I'm not there yet. I battle every day.

Having dystonia and using a walker has opened my eyes to the fact that everyone deserves to be treated kindly. No one deserves to be stared at. I've been convicted of this. If I ever find myself staring at someone who is different, I stop immediately. I know how it feels now to have people stare and I can't stand it, so I try my very, very hardest not to do it to others. It is hard though. Human nature is to stare, to wonder what's wrong with someone. I have no qualms telling anyone what's wrong with me, if they ask. That's the key though: ask, don't just stare. I know this is hard, because I've had to deal with it too - wondering if I should ask someone what's wrong with them or just leave it be. My personal preference is that you ask me what's wrong or act toward me like using a walker is something everyone does :) I have to give huge props to my co-workers and my church family. No one makes me feel unloved or like I don't belong.

I've always had a rather shy personality, but having dystonia and using a walker has brought out a side of my personality I didn't know I had. I can be bold and courageous! I can be tough! I can be strong! While I still cry easily and get my feelings hurt even more easily, I'm beginning to see signs of tough skin growing! I'm no shrinking violet. I'm a blooming tulip (I only use tulip, because it's my favorite flower!!). God's not done with me yet. On the flip side though, I've seen where having dystonia and having to use a walker has made me callous and unloving. I snap at people and get annoyed more easily. I'm jealous of what others have. I'm hateful towards people. I am not proud of any of this and I'm praying every day that God would help me to be kind and loving, not jealous and to be happy for others when life brings them pure joy. I like the toughness and the boldness of my personality shining though, I despise the jealousy and the callousness. I'm a work in progress (as we all are)!

I'll end on this: A walker is just that, it helps me walk. The walker is not me in a nutshell, but it does help define me. I say this because without having to use a walker, I might not have ever met some of the people I've met and I may never have talked to some of the people I've talked to and I may never have had any impact on anyone. I'm beginning to think that the walker is just one of God's many tools that He's using to define me, to refine me and to make me into the person He wants me to be. Yes, I'm still going to be embarrassed from time to time, yes I would still rather walk with my own two feet than have to have the assistance of a walker, but who knows - what if some of MY life's greatest blessings come BECAUSE I walk with a walker?

Before my makeover of the walker:

After my makeover of the walker:

Thursday, September 4, 2014

Day 4 - Dystonia and Exercise

I've written about exercise before on this blog, but I'm going to write about it again.

I never in a million years thought I would be one to talk about exercise and it's not because of the dystonia. I just didn't like exercise, so I didn't do it. I don't know why I was so opposed to it. For as long as I've been alive, my dad has always jogged and worked out. Mom would do the exercise videos and my brothers were all in to running or sports. But, I got the "let's sit in front of the TV and eat chocolate" gene in the family and I was proud of that! We all know how much I love TV :)

But then something amazing happened....

I do believe it is a God thing.

I like to look at it like this: my ability to walk without assistance is gone (at least for now!), but I've found freedom and strength in exercise.

What I once loathed, I love now.

Amazing. Absolutely amazing.

I'll tell you, it didn't come overnight, but it came! I may have to walk with a walker, but I can sit on a recumbent bike and exercise. The bike is a blessing. Of all the exercises I could do, I find that the bike is the one that I can do with the least likely chance of me getting hurt while doing it. I'm a klutz to begin with and add dystonia into the mix and I'm a walking (falling) advertisement for a doctor's best friend. I mean, I've even fallen (a lot!) while walking with the walker. It takes talent to do that, people, talent, I say! :) I'd probably keep every emergency room in business if I had to ride outside on a "real" bike or jog or even get on a treadmill. While, this may be a good thing for my brother (who is an ER doctor), I don't particularly want to spend all my time in an ER, so....sitting on a recumbent bike it is! And the best part is - I get to watch TV while doing it! OK, that may not be the best part. I think the best part is the accomplishment I feel when I'm done. The "runner's high" (or should it be biker's high?) I get after a good workout. I even love the sweat that drips from me after I'm done. What has gotten in to me?!! :) So yes, I may have dystonia and I may have to walk with a walker and I may feel defeated some days or frustrated, but I can exercise. God's given me that gift and I'm not about to throw it away. Thank you, Jesus - for when one thing is taken away, You replace it with something else.


Wednesday, September 3, 2014

Day 3 - Dystonia and Umbrellas

One thing (of many, I can assure you!) I never thought about before dystonia became a part of my life, was the fact that it is very, very difficult to walk with a walker and hold an umbrella. It's not something that just comes to mind like "Oh wow, if I ever had to walk with a walker, how would I also manage holding an umbrella?" No one ever thinks like that :) Or, at least, I never thought like that! But it's one of the many "obstacles" I've had to figure out since having to use a walker. To say I have it figured out, well, that would be lying. I don't. In fact, I gave up on it altogether. But when I was in college (pre-dystonia), I had an awesome umbrella. It was dubbed "Austin Powers" for its wacky and bright colors and design. It was the perfect umbrella for a college kid, because in a sea of black umbrellas dumped at the door of the cafeteria, "Austin Powers" was super easy to spot. I loved that umbrella! On a wet day it kept me dry and its colors brightened my spirits. When dystonia set in, I had no clue that something as simple as carrying an umbrella would become such a task! It never even crossed my mind that one couldn't hold an umbrella and walk with a walker at the same time, but let me tell you -it takes talent and coordination to do this, neither of which I have (hence the need to walk with a walker!). I soon realized, I was left in quite a conundrum. It was either use the walker and get wet or use the umbrella and fall. So, "Austin Powers" had to be retired. It was a sad day. He was a good umbrella, a loyal and faithful friend, but he was just too dangerous for me to use any more. We'd been through so much - four years of college and several years in the working world. He even got lost once in Ohio, but my best friend found him and gave him back to me as a Christmas present. We had a good run. He served me well. And I'll always have the memories and a picture of him for posterities sake:

So now, I use a much safer, reliable and boring raincoat (with a hood, because a raincoat with no hood defeats the purpose - at least in my mind!). Yes, I guess rain coats can be fun too, but for me, not quite as fun as my "Austin Powers" umbrella! Oh the memories!! :)