Glass Case

One of the silliest movies I have ever seen is Anchor Man. I hated that movie when I first saw it but then I watched it with my sister and I saw her crack up over the entire thing made it so special that it has now become one of my favorite movies! There is a line in the movie where Baxter the dog has been kicked over the bridge and Ron Burgandy is in a phone booth yelling that he is locked in a glass case of emotions!!!!!! All I have to do is watch this clip and send it to my sister and my day is filled with laughter and joy! It is amazing how such the simple act of laughter can make an impact on your day.............a five second belly laugh and the next 23 hours will never be the same!

As positive as I am I have been struggling over the last few weeks. I haven't been well and days and nights drag on and seem to melt into each other with no real difference. The sun rising just allows me to see the pain I am in and notice the things I can not do. The night encompasses me with the intense feeling of the pain I have tried to ignore in the light of day. It has been a battle to get out of bed, tend to my ever growing garden and find joy in simple everyday moments. I am hunting out the free feeling that five seconds of laughter will give me.

I spoke to someone yesterday who had some experience with auto immune diseases and he said they were the worst diseases that took the hardest toll on lives that are affected by them. He told me that he was oh so sorry and to expect moments of resentment and loss directed at me personally. He told me to prepared for the ones who love me the most to actually dislike me the most. This dislike does not resonate from hatred towards me personally but this disease that seems to tag along like a shadow. I understood what he was saying but I just could not believe him...........I will now believe him. I will not let him and his viewpoint lock me into a box and throw away the key. This is my life and my heart and I will decide who and when it breaks. 

I may be locked in a glass case of emotion but........look it is glass! I can see out. I can still see the sun and feel the warmth through the case. I can see clouds roll in and watch people pass me by. I can still see my friends and family. There may be times when I can only feel them ever so slightly through the vibration in the glass but they are still there. They have never left. No matter how dark the nights get and intense the pain has become there is always someone there to give me my five second laugh. How can I believe that a life so precious can lead to so much anger? I will not let it happen and I will not allow my disease to take away the one thing that I have left to control......my heart.

Life is beautiful no matter where you are watching it from. You just have to choose to open those beautiful eyes of yours and take in whatever passes you by and grab onto the things that you can not live without. 

Make some noise!!!!!

I love dance!!!! My love for dance sprouted very early in my life. Holly and I would put on Debbie Gibson, Tiffany and young Madonna records and put on shows for our parents. We danced all the time!!!!!! When I was younger my mom decided to enroll me into dance class. I was clumsy but what could dance hurt?!?!?! So into ballet I went. Oh, ballet is beautiful don't get me wrong but it was not for me. My mom tells me the story of one show where I had danced in my pretty pink tutu and sat and watched the others perform. When the tappers came onto stage I cried to my mom..........but I want to make some noise too!!!!!!! So, off came the tutu and in its place were shiny patent leather shows with taps on the bottom that allowed me to make as much noise as I wanted.......maybe even tooooooo much noise for my mama.

As I got older I continued to dance. I practiced when I was forced to and performed at competitions and recitals until I was in my early teens. Dace was my life line and I loved it more that you could ever imagine. I continued with tap and jazz and never put on that tutu again!!!!!

I remember when Tim and I first met and I would dance around the kitchen as we cut veggies (no knife for me) and I would just step and twirl and bow! It was me showing him my innermost being. I loved dance and dance made my life beautiful.

As time went on and my Lupus acted up more and more and the ability to move fluidly disappeared and twirls were replaced with limps. My beautiful dancing feet had be stolen from me and in its it place there were these stumbling, numb things that did not belong to me. I loved to dance around the kitchen and spin around the room. I lost my beauty and sadness set in because I knew in my heart that as time marched on and my Lupus progressed dance would become a thing of the past...........something I used to do. It was one of the hardest realizations in my life. Movement now became something I had to do to eat or go to bed. Movement on someday's is impossible and I rely on others to help. Lupus robbed me of my dance and I want it back!

Again, I am faced with a choice and to me and my love the option is very clear..........I will continue to dance! I may not move my feet myself but others can. I bask in the beauty others express as they move and interpret the music. I close my eyes and I can also move. You see, I will always be a dancer. I respect movement and what it shows to the world. I will always dance with my heart open wide! I will raise my arms to the sun and spin around even if it is only for a moment. I am a dancer and boy can I still make some noise!

One year and counting!!!!!!!

I remember being in kindergarten and hearing my teacher tell me about middle school, high school and college. Boy did that seem impossible! The time between those events were too much for my little noggin to comprehend but it all happened, just like my teacher told me! Life happened and memories were made that would follow me forever.

Did you know that it has been almost a year since I first posted on my blog. When I started it was a time of change in my life. I had to start a round of testing that lasted almost six months. It was a scary time in my life and I need to reach out. I wanted to always be honest and I wanted to bare everything in my heart and soul. I wanted others to truly feel as if they were a part of my life and what I was experiencing from day to day.

This blog was supposed to be centered around being sick but now I look at it as a sounding board. A way to convey my heart and my thoughts at a particular moment in my life. I wanted it to be small snapshot of my life during those moments. There were moments of fear, loneliness and solitude. There were moments where my life way nothing but lab coats and testing that would resonate to the core of my being and cause so much pain all I could do was lay there and wait for it to pass. There were also moments of surprise and wonder. There was joy and celebration of life even when it was dark. There was happiness and at times you could read the fear melt away.

This blog has saved me. This blog has allowed me to reach out to others and to touch lives and give a better understanding to what it truly means to be sick with a disease that will never go away and then CHOOSE to live with it. I wanted others who struggle everyday to have a place to come to and read someone else's experience. They can laugh and cry but always walk away feeling less alone. All I have ever wanted to do was to allow others to have the opportunity to engage and to learn something.

This was a tribute to those around me who have loved me so unconditionally that a new word should be developed for all of them . Something like fantasmicamazeme!!!!!!  It is not easy choosing to love someone with a chronic illness but if you do be prepared to see the world through rose colored glasses and to open your eyes to horses that if you feed them popcorn will change into unicorns. Expect to experience life to the fullest and never have one regret because why leave this world with regrets when you have time to make them happen?!?!?!?!?!

So, happy birthday to The Things They Don't Tell You!!!!!! You have been my outlet and hope and I can not wait to continue to share my story with others<3

Lessons

When I was growing up there were amazing opportunities that would teach us how to be a productive adult in society. I took Home Economics so that I could learn to cook, sew and even balance a check book and I even joined FHA. I grew up in a farming community and so I took Agriculture Class and joined FFA. I sat on the junior fair board so that I could learn about leadership. I was a cheerleader and dancer and this would teach me how to stick with something you committed to. I even had the opportunity to go to college my senior year so that I could get a jump start on my college education. I took every opportunity that I could so that I would not be shell shocked when I left the comforting home of my parents. The day I graduated I felt, like most children experiencing freedom the first time, ready to take on the world!!!!

I did everything I could possibly do to prepare myself for a life that one day would include graduating college, getting married, building a life and home and becoming a family. I really thought at eighteen I had everything figured out! My mom knew a lot and my dad had great stories and advice but who need that! I knew everything that I could about life and no one could tell me otherwise. I was ready for anything this world could throw at me!!!!

It has been sixteen years since I walked over that stage and received my license to live my life in the form of a diploma. Over the last eighteen years I have been taught so many life lessons and how life is never what you expect it to be. I have learned about heartbreak and joy. I have felt disappointment and fear. I have found love and realized that love should not hurt so much and walked away from what I thought was love  only to find what real love truly is. I have been told I may not live to see thirty and instead I celebrated thirty-four even when doctors told me that may not happen. I have had to learn some lessons the hard way and unfortunately have had to deal with a disease so young and have had to go through more life changing moments that most will never go through. Has this been a challenge????? Of course it has been a challenge I have been never been one to shy away from a silly little challenge. I say bring the challenges on and let me show you how it feels to be brave and positive and see the light before the sun even rises. 

Birthday

Today I am 34. Yes, that is still very young but my body has lived enough for a lifetime! Lupus has taken years off of my joints and muscles and has wreaked havoc internally. I think Lupus thinks it is a party everyday in my little body BUT NOT TODAY!!!!!!! Today is my day to celebrate this magnificent thing called life!!!!!

You see, I am not sad that I have Lupus. I may become frustrated with the disease and the mystery it engulfs me in but sad I am not! I feel my disease has allowed me to live the past 34 years with grace and dignity. It has allowed me to see life for what it really is and the beauty found in everything from a cloud whispering by to a disagreement that allows us to grow. I am able to feel love and accept love whole heartedly because you never know how much time is left. I have opened myself up to change within myself as well as with my surroundings. I wanted to travel the road that has NEVER been taken and see things that only others will dream about! I want to surround myself with unconditional love and support. Most importantly...........I want to have the deepest laugh lines the older I get!!!!!! Yep, you heard it...........I am asking for wrinkles!!!!!!! 

Today I not only celebrate the fact that I have carried on for another year, I celebrate those of you who have  filled my 34 years with so much love, kindness and joy! I am thankful to all of my parents who have had a hand in raising me. My mom and dad are no longer married and I have to say I was never one of those kids who thought that one day they would get back together because if they did they would erase some of the loves of my life! I have a Suzette, Jeffrey, Stephanie, Jared, Dave, Christi, Jenilee, Josh, Jackie, Jamie and Jessica! I have been surrounded by so much love and would never want to have any of them taken out of my life. They are the best parents and brothers and sisters a girl could ever imagine having! I am thankful that my mom Jan and dad Steve have continued to be a positive influence in my life every single day. They chose to bring me into this world and I could not have asked for better parents. I am the one blessed for being brought to them. My sister Holly has been my slobbering sister when she was a baby, my cheer leading/high school partner who would fight with me all the time and who has become my best friend and my true soul mate. She has brought the two brightest angels into my life with Lauren and Mia..............ok, Russ, you are an angel too!!!!!!

Over my life I have had amazing friends come and go. Each of you leaving a mark on my heart that would change me forever. I have learned the true meaning of friendship and have had bumps and bruises along the way. I have been taught lessons in forgiveness and humility and have grown to be a better friend because all of you. You have all become my family and have held my hand in the hospital, sent me sock monkey cookies or emailed me a little something to remind me that I am not alone. The beauty that I feel within is because of all of you. If I am even half the friend that you have all been to me, well, I will be doing good.

While all of you have shaped me and helped me to grow there is one person who wakes up swinging at Lupus with me everyday, he is my Tim. He has been the love that I had never felt and the joy that I never knew existed. He has allowed me to continue living my life with no restrictions. I have seen some of the most beautiful places on a dirt road in the middle of no where because he also has an adventurous soul. The complete love he has shown and the unconditional support is something that I never knew could exist between two people. Tim, you have given me the most amazing gift I could have ever asked for........complete love. You are my best friend, my partner in crime and my love! You have brought the world to me! You have also given me a new family.......Bob, Pat and Chris. They have taken me in and have shown me so much love and I am proud to say that they have become another set of parents to me and a big brother.

How could anyone ask for anything more when my life is filled with so much? Ok, it is my birthday so I will ask for one thing............lets all meet back here this time next year and celebrate 35 years of love and adventure!