Patience

                                                                    "Come as you are"

Being happy isn't always easy. Sometimes it takes a little bit of perspective, patience, and attitude adjustments. You can't direct the wind, but you can adjust your sails. 

These past few weeks have been every bit of being weak, being strong, being tough, and being emotional. I've always promised myself that if I am going to have a blog I am going to keep being honest but real at the same time.  

                                                                 Here it goes...

Number one:My anxiety level has been sky rocket. 

Number two:I have been missing teaching so much lately. 

Number three:Going through speech therapy, physical therapy, and TRYING to get into occupational therapy is just nothing short of being overwhelming. It isn't fixing dystonia totally and that frustrates me but at the same time I knew it wasn't a cure all. 

Number four:When my body flares I have a real hard time keeping my cool. I was a pre-school teacher. I fixed things from toys to tears on a daily basis but I am finding myself unable to fix my own problems. 

Number five:What is taking Jesus so long to return? Like I'm getting tired of the wait. Every time I turn around its a "Be patient Chelsi" OR a "I know the waiting is hard". No. It's just annoying. 

 My favorite part of teaching was always the thousands of pictures I would come home with each day.

              My Mom texted me today and said that one of the littles made me a picture today! 

                      Little did that little one know it is just what I needed to make my day. 

        My favorite part of being a toddler and preschool teacher was the love they had for everyone. 

Sweetest story:When a parent comes to pick up their child and stops to say "My child prayed for you last night on her hands and knees. I'm not sure what for but she said "Jesus knows mommy!" Come to find out that little four year old was praying that I would feel better. 

    While my heart isn't in teaching daily like it once was I have found myself missing the "Miss.Chelsi!" a thousand times a day. The "I wove you Miss.Chelsi!" at least ten times a day! The little giggles or the "Miss.Chelsi I want to pray! She always gets to pray. Can I?" My heart<3

                       I am thankful that Jesus has placed my heart at Chick-fil-a. 

I am thankful that I am loved there. I am thankful for bosses who love Jesus. Who stop to pray with me. I am thankful for the little things like this in life. 

I get to be around people daily. I love people. I love that no person is the same in this life. I love that Jesus has grown me so much since being with CFA. 

                                    Sweetest story:My interview with the owner. 

The times that the senior team leads like Alexis, Rachel, and Mckenzie have all taken time out to just love me right where I am. I am so imperfect and they see past that imperfection. How thankful I am. 

I know that I could go to them and tell them anything in this world and still get the reply "Love you Chels!" This last month was such a struggle and in that time of struggle I knew that I had so many praying for me. Including supporting me in flying miles away to Washington even after I missed work a few weeks before due to dystonia. 

The last few weeks my heart has been in question of staying a host for the scavenger hunt in the state of Indiana. That's my baby but somedays I just get so overwhelmed by it all and think to myself "I'm not making a difference. There is no cure. What am I doing?" I want nothing else to see a cure for the little people. Sometimes, I just feel like what I am doing isn't enough. 

I with two others are hosting the very first dystonia support group this weekend. While I am excited I am also on the struggle bus with it all. Growing up there was nothing like this. We knew no one with dystonia...even when I got diagnosed. I am not so sure that I am ready to re live the struggles we faced growing up this next weekend.
                     15 families have joined and will be joining us in Indy Sunday afternoon for this.
My prayer is in this that others (weather it's parents, teenagers, children, adults, grandparents) will know the moment they walk in and some of us meet one another for the first time they will know they aren't alone. 

             
 My little lunch date Tuesday asked me "Chelsi why do you move a lot?" 

              A part of me didn't know how to answer that question but knew I needed too. 

I said "Dystonia. It's goofy isn't it?!" Thinking she would agree but instead says "Does it hurt?"

            I quickly said "Somedays." The little one said "You need a nap then!"

                                              "Stonia is like mean but get mean back ok?!" 

                                    When you want the truth about life just talk to a child! 

Last week Indy called and I have an appointment with a movement disorder doctor in May. I know that sadly there is no cure but I just can't help but to be scared of what I might hear. That "There is nothing else we can do" hurts. I really struggle with communication. Shocker! I know but in all seriousness It's not that I mean to struggle with it on purpose. I just struggle with it. Weakness of mine for sure! I am preparing myself so I can actually talk to this doctor in a way he will understand where my struggles lay. In hopes he can guide us on those flare up days a little better. 

                Somedays. Some weeks. I struggle. This would be one of those weeks.

          This has been MY jam this week in the mist of questioning my leadership skills.
             I want to lead like Jesus but this week I have felt so just not good at anything...

BE the voice

Everyone has a voice but it's up to each of you how you decide to USE it.

What a week. I think I am still overwhelmed at where the Lord has taken me in this journey. A journey that seemed to be impossible just a year ago. A journey that hasn't been easy. Impossible is only impossible when your not willing. 

It started with our beautiful plane ride to Washington. THAT reminder that HE still cares about the little things. The beauty of our world and all the GOOD it does have to offer.

Inhale courage.

Exhale fear.

Flashback to when I was a High Schooler who wouldn't even raise my hand to say one word. 

You'd never know that today! 

I am thankful for the battle Jesus fights for me. 

I am thankful for the strength he allows me to have through this journey.

I am thankful for the job that I am at who stood behind me in this mission.

I am thankful to have had a friend and co-worker like Jayla to stand beside me in Washington.

Our trip in Washington started with meeting up with Anne and Jason.

Jason has dystonia just like myself. 

I had the honor of meeting them three years ago and fell in love with both him and his wife.

Throughout the year Anne has been my saving grace. 

To have others that understand without saying a word means the world. 

We walked over ten miles Sunday with a couple breaks! 

I was so proud of myself.

A couple times where my balance was rough but no worries because Anne had my back.

We learned how beautiful history is. 

How real it is.

There is just something about being with dystonia family that fills my heart.

Which makes the goodbyes and see you laters so much harder.

Lets just say we had an early bedtime Sunday.

Monday came and we were at exploring once again. 

Later that evening we would met up with others that would be flying in for Dystonia.

Dale Dirks who just doesn't get enough credit really fights for dystonia on the hill daily. 

Making this week possible.

His passion to help others is so inspiring. 

If your in the Washington area look him up because he is super! 

The Thompson family.

This is such a one in a kind family! 

I call them my Washington family because Dan and Jean took me in as one of their own my very first year.

Our team for this year!

Victory never felt so good. At the end of a long day filled of meetings with state senators.

The weather had turned into a rainy cloudy day BUT that didn't stop us. 

Dystonia is like that on days but the strength the Lord has given us is by far stronger then ANY storm could ever bring.

So bring it Dystonia because together we have this.

Get'em and make them listen...even if it's in the hall way. 

Thanks Massie!

People always ask "Who was your favorite?"

"What meeting was the most successful?"

My answer this year:

ALL OF THEM.

Senator Todd Young

Trey was amazing! He set down with us for about 25-30 minutes.

GO INDIANA! 

After a very long successful day we flew back just in time before the storm came through. Our plane ride was rough coming home but we made it safe and sound.

Thursday, Jayla and I got to have lunch with our store owner. 

Sharing all the places we went.

He asked both of us what our favorite thing was about the trip.

Both Jayla and I answered "Helping others. Seeing that passion in others as well and knowing our voice matters."

While I was away I realized how blessed I am to have a job that I am so in love with.

A owner that truly cares.

A owner who set down and prayed with us.

That is so rare in todays world.

I am beyond thankful for him. 

Who loves past dystonia.

Who sees people for who they are. 

I realized yesterday as yesterday was my first day back to work since last Saturday how loved and wanted I really am.

The many who stopped and said "Washington looked fun but the reason behind it is so cool Chelsi!"

That moment your getting ready to go get ice cream with some of your co-workers after work to catch up...

Before stopping to give your boss a hug and thank them for allowing you to take off to go!

His reply being "Thank you for going and helping others! I'm glad you had fun but glad your back with us." 

GUYS. BE THAT voice that others so need in this world.

Putting Jesus in the center. 

The rain may hit BUT you are stronger then any storm you may face! 

We also found out a few days ago that dystonia made the DOD list for the 2019 year!!!

GO JESUS, GO!!!

What a bittersweet reminder...

"I praise you because I AM fearfully and wonderfully made."

Psalm 139:14

I often wonder what Jesus was thinking when he was creating me?

Did he know the struggles I would soon face?

The mountains that I would have to climb?

Let me take a step back for a moment. 

All my life I have known nothing else but doctors,tests, and medication trials...I remember being in first grade and the doctors asking for a brain scan. 

I really didn't understand what was happening. I recall my parents coming into my room a week or so before and sitting on my bed telling me that they decided to get some tests ran. I think the only thing I remember my Mom saying was "It'll be ok my sweet girl!" 

I will never forget the moment I had a brain scan done. The nurse held my hand so tightly and did not leave my side. 

I thought at that moment I was done with testing. 

Only to find out that was just the start of our journey that would really test our faith in Jesus.

The last few weeks have been extremely tough. 

I should be use to tough but I think I missed the memo a year ago when the doctor's said "There is nothing more we can do. We ARE sorry..."

So much easier to ignore what you don't want to hear or admit. 

My famous quote in any doctor's office was always "Please just fix me. Please!"

In every single moment of this journey Jesus been there with me.

I have laid in the hospital bed in tears before just begging Jesus to come back soon.

The many of times I have felt so unloveable.

But still Jesus loves me.

Last week we ended up in the ER...

Last week was so real to me.

That reminder of "There is nothing more anyone can do."

When you see a text from your boss (Craig) that asks "How can I help?"

You want to reply "Fix me, please." 

However, You know that's an unfair request to ask. 

You see the MANY faces around Chick-fil-a that are right there going through this with you! 

You see the tears fill in others eyes and you know they're hurting for you.

One afternoon Craig asked everyone this question that threw us to think on a deeper level.

"Are you a thermometer or a thermostat?"

I really thought he was a crazy person when he first asked me this question so randomly one day.

But then when I was in the ER last week with a thermometer in my mouth I kinda had to laugh because it was at THAT moment I understood in a deep way that I hadn't before.

A thermometer you can't change. It is what it is. 

A thermostat you decide what the temperature is going to be. 

Kinda like Dystonia.

It is what it is. I can't change that fact.

But like a thermostat I can decide what to do with that. 

This picture makes my heart so full. 

Especially tonight after a emotionally drained day...

This morning two doctors declined our case because of it being so complex.

My first reaction was "Come on Jesus! Do your part because I am doing mine. Stupid doctors. Stupid Dystonia. Stupid world."

I am not a crier because I was always raised 

"Knock it off. Get tough and do it!"

But here in the last serval weeks I have cried more then I ever have in my whole life.

Asking Jesus all the "why's"

All the "There are people who don't even love you and their health is great but I love you and my health is a struggle. Really!?!" 

I walked into work today to Craig giving me a hug followed by Maisen giving me a hug. Little did they know it is just what I needed to get through another day.

My work night ended the way I think Jesus had planned...

No where like the empty playroom to have a Jesus talk with two of your amazing co-workers. Sharing your heart and hearing 

"Chelsi. We're more worried about you then ourselves. Our hearts break with you and for you! How do you think we feel when there isn't anything we can do to make dystonia go away?"

"Yeah Chelsi. Your going to come out even stronger then what you went into this as! Maybe the Lord is showing you to cling to him more."

"Your not alone in this. You have a whole team."

"Prayer changes things!"

"We have a Dystonia scavenger Hunt to get ready for and together we'll do this!" 

"It's not just changed your heart...but ours too Chels."

"Would you really be here if it weren't for dystonia? Our paths may have never crossed if it wasn't for this journey."

I come home to a dark apartment where this letter was sitting on my table. I open to see that it is from my fourth grade teacher. Inside laid a check. I stood there in tears just thanking Jesus for tonight. 

The Lord knows what we need more then what we need. 

I am getting ready to fly miles away to fight for a cure for Dystonia on Capitol Hill.

What a beautiful reminder to the love Jesus has for us. In those times of heartbreaks, of struggles, and telling ourselves we aren't lovable. 

Please pray that this next week makes a difference in others life's. 

That Jesus shines through me.

In the end I'm not sure what Jesus has in store but I know that one day he will make my body brand new again. 

Until that day I pray that others will know they are so lovable. 

That Jesus sees people for their hearts.

I hope this week ya'll do the same! 

Make it YOUR mission.

Make it your mission to give someone a hug.

It really means the world when your going through tough times.

I promise.

A year later and I am just now realizing...

                       "But understand this, that in the last days there will come times of difficulty."

                                                                       

   Those times that you want nothing more then for your body to just stand still. To hold still. To not jerk. The moments you look down at your phone to see Mom again..."Are you ok? I'm so sorry your dystonia has been a struggle. I wish I could take it for you. I love you!" 

Let me be honest. I have went from being frustrated to angry. To realizing I have no control over when I move and when I don't. Which lets be honest drives me crazy! 

Taking a step back into time. My mindset this time last year was "We will put a simulator in and call it done. No more dystonia." I sometimes laugh at how crazy that mindset was but I had so much hope for a cure then. While I still have hope that one day the future generation will see a cure it's really hard to keep my eye and heart on this. 

                               Those moments where your asking Jesus all the "Why's?" 

  1.)Dating:

Remember that one date that you where asked a million questions about why your body moves? That was such a fun date...Let me answer more questions since that is the first thing you see in me. 

2.)Those times you blank completely out but have no idea why or even what causes it? It always ends up in "we don't know". 

3.)Those times you want to push and work as hard as you can but your body is on the struggle bus...BUT then you know there are people out in this world who have healthy bodies that don't work nor want too. Like how is that even close to being fair? I'd take their healthy body and push and push. 

4.) Why is chronic illness come with anxiety? Like I never know from day to day how I am going to feel or what dystonia may bring to my body. 

5.)That time where you suck your pride and make yourself go through speech therapy. Thinking "Man I did this and I can't wait for the doctor to say your speech sounds awesome! Speech complete." Only for them to say "It takes time. Keep going!" What? Why? 

        From day one when I started blogging I promised myself to be honest in each post I blogged. 

There are crappy days that make me want to give up! To say "Dystonia you win!" 

In the last few days I have felt so frustrated with myself. Asking myself "Why can't you control your body? It is YOUR body Chelsi." I have fought it daily this week. Wanting no one around me or near me. 

I can only handle so much "There is nothing else we can do. We are sorry." Do something! Fix it. Research it more. Do something so that not another human goes through this or feels this way. Your the doctors. And also very human at that...

I came home tonight to only find myself struggling to get dressed. Like come on! At 26 years old this shouldn't even be a struggle...and then when it is I get so frustrated and just stand there thinking that will make things better. Ha. Guys Getting mad doesn't help things but only makes it harder so I am learning. 

Then I am sitting in bed and this picture comes up on time hop and I remember that this was a few weeks after our rough results with a spinal tap. Somehow she makes everything ok!

Not once has she not been by my side. Not once has she ever complained. 

I know that Jesus knew what he was doing to allow her to be MY Mom. 

This time last year we were sitting on the couch when she said very slowly with tears in her eyes "I'm sorry sister. There isn't anything else we can do. Sometimes we don't understand Jesus's ways but we have to trust their good." 

I thought that I was OK with no answers. 

I kinda just skipped that no answers part until about a month ago. 

It hit me that there really wasn't a cure yet. 

That dystonia is just what it is. 

Tough.

A year later and I am just NOW realizing that this is reality. 

It is by far the hardest thing to remember that you are loved when you just feel so defeated. 

Welcome to David and Goliath. 

A part of me feels like I know how David must have felt before his battle ended in victory. 

Sometimes, I pull these out to just read. To remind myself Jesus uses the tough stuff for his glory. To remind myself giving up would be easy but fighting it head on will always be there harder one.  But the one worth wild.

I'm so thankful that when I feel so crappy about myself that Jesus still loves me. 

"Sometimes God will put a Goliath in your life so you can find the David within you." 

Sharing my heart

                                 Lately my heart has hurt for the things I can’t change.
This past week has marked a year since having to let health be. For the past few weeks I have struggled with that. Struggled with the fear of letting Jesus just have it all. I’ve always felt the need to be in control of what I’ve never been in control over. This past week I’ve been reminded of the full journey. The full uncomfortableness of sharing with the world such a personal testimony.

This week I was faced with the uncomfortableness of reading a book to all the kindergarteners. I must have told myself and Craig a million times I couldn’t do it. I guess you could say I was setting myself up to fail before I even knew how Jesus was going to work Friday morning.

                             We really never know what Jesus is up too for our life’s..

A year ago this would’ve never happened. You learn to appreciate being in the moment more when you’ve been taken to a moment completely opposite of this one. 

Last Tuesday before this happened Craig and I were suppose to have a meeting. Something came up where we had to have it over the phone. 

Sometimes, Jesus allows different plans because he knows exactly what we need! 

I always listen when Craig talks because he’s a wise man. Each time I learn something new from him about just life in general. 

On this particular day I was wrestling in God’s word. Knowing Jesus loves me daily. Dystonia or no Dystonia but feeling like I’ll just never be “good enough”. 

If there is one thing Craig said over the phone that hit home to me was this 

“It’s ok to hurt or feel disappointment because that means you care. Don’t stay there too long because it will crimple you. You keep going!” 

See, I needed this pep talk...little did he know! 

I had mentioned all week me wanting him to be there at the school Friday! I however knew it might not happen because of his busy schedule. 

Not only did he show up but he stayed the whole time! Which may seem little to anyone else but that completely made my week! 

If you don’t have a boss like this...well your missing out cause it’s rare! 

I did it! I read the story and by no means was it perfect but the fact that I did it was huge! 

Flashback:I was in 8th grade and it took me 20-30 minuets to just read a paragraph out loud in class due to my dystonia. 

I’ve watched Jesus break my heart for what breaks his this past week. 

I’ve watched Jesus work in my life the last year! 

Sometimes you just have to celebrate with a dance party! 

My heart was pulled in so many directions this week! 

Today, Mekale prayed with me during church. Who would’ve thought that had I not lost control of my speech I probably wouldn’t ever be at Chick-fil-A or know Mekale. It really is a testimony to God’s love for me. 

I’m not sure anyone can say that their speech therapist prayed with them let alone just loving me. 

This afternoon Dystonia has really hurt physically. 

Tonight has also been emotional knowing I’m not in control of my life but Jesus is. To have a heart to heart chat with Jesus about all the why’s and scary things. 

I think he understood :) 

Also, this week has taught me one of the most important lessons. That is that God allows unfair things to happen. He allows us to struggle. 

But his love for us never fades. 

I ended my Sunday evening giving Jesus Dystonia fully this week! 

Doctors,  Thanks for challenging me and telling me I’d never be able to do things that I just did this week! #Boom 

The sky is the limit, right Craig?! 

I’m looking forward to this week and all Jesus has in store! 

I’m glad that HE knows my heart better then I know my own heart. I never knew how much I needed Craig and Mekale this past week! 

Sometimes loving someone is all it takes...

Have an amazing week everyone!! 

Simple things with a big purpose...

            "Sometimes God doesn't change your situation because he is trying to change your heart." 

My heart has been changing in so many directions latley...I'm talking every which way. 

The sky IS the limit

                                  Where to began...

From the moment this year started my health had been a big concern. The many doctor appointments that were scheduled that lead doctors to leave frustrated. The loneliness it brought. The terrible feeling in my heart that was left after no results from a spinal tap. To this day I was never so sure that we would have results, and answers. 

Flashback:I remember being an 8th grader and getting upfront reading two sentences out loud. I was so nervous. I was nervous of being made fun of for shaking. Boy little did I know God was preparing me to be strong in him for later in life. He knew that one day (tonight) I would look back and smile about it.  

                                      Smile that he's still working on me and not finished yet...

This year has taken me to Washington DC to speak on Capitol Hill for the second time in a row. My Mom has always told me "You are such a stubborn child." 

So I thought that I would put it to use for another year! 

Representing IN and a voice for others who have dystonia.

I learned pretty young in life that life IS what you make it to be.

Be that voice for others, holding nothing back! 

This year has brought serious health changes.

I am ashamed to say I let myself get pretty heavy...

BUT I took my health back and decided that something HAD to change. 

When Jesus closes one door he opens another.

In my case (out of the blue) a neurologist following my mystery case sent a letter that stated "Has she ever tried a Keto diet for the jerking part?" 

A keto what???

Google became our best friend for days. 

At this point we had nothing to lose.

It's been NINE months of hard work but I have done it! 

While I struggle to be at my goal weight I am 60 pounds lighter!!! 

And for that we celebrate.

                                          

                        It was THIS year that I hosted my VERY FIRST EVER event in Indy for Dystonia! 

All proceeds went to the Dystonia Medical Research Foundation in hopes that a cure will be found for at least the next generation. Words can't explain the overwhelming feeling I had on this day! What a way to spend your 26th birthday, right?! 

           

           I am SO proud to say this event raised over 10,000 dollars for research!!! 

                     

The IPL building was even a part of the event with us! 

Coming in 2018 to the state of IN:

Our very own support group ALREADY filled with over 15 families in the area! 

Our second year of the Indy Hunt for a Cure

Watching Jesus work through what I always was so embarrassed about growing up is just been such an adventure! 

From meeting complete strangers on the Canal to praying with this group of people.

Last but not least and one of my biggest accomplishments this year...

A new full time job at Chick-fil-a!

I never in a million years thought that I would give up early childcare but after my health and just feeling as if God was leading me else where I made that decision. It has honestly been one of the best decisions I have made this year. 

I have come to love people.

People of all kinds.

\This makes me smile so big. 

Dystonia...well we make it work!

I say "we" because it's such a team effort...Like today when it's crazy busy and you keep telling yourself "You can't do this. What if I mess up? Or what if I spill these fries?" 

Then you hear Senior management say "You do what you feel is comfortable. We can switch it around to make it work."

Then you realize "This is where I belong!"