Life

Wow!!!!! We are here again this year. This day, this time last year I would never have expected to be where I am at. Honestly, if you would have asked me seven years ago if I would ever have a life filled with adventure, the truest love ever imagined and friendships that would fill my longing heart I would have replied with a worried laugh. I would stop and think in wonder, how could that life be mine?? Well, it has!!!!!!

For those of you who do not know me personally I went through a very difficult life changing experience that brought sadness and a sense of fear and lonesomeness I cold never imagine. I was twenty-seven. I was alone and I had Lupus. Would I be able to be loved the way everyone deserves or will my disease run off every open heart that I would come in contact with? I thought at times who would love someone with challenges that may increase over time. Could someone look past the ever presence of illness and wrap their arms around me and carry my heart so carefully through the bumps and bruises of life? It took some time and a lot of contemplating in order to come to peaces with who I am and to accept I was sick but that did not mean I could not experience life and every ounce of it that had been destined for just me. Then one day I woke up and everything was so clear to me and I realized I am special and there is love waiting for me and a family of friends who would surround me and protect me no matter how close to the burning fire we would get. 

I removed my heart from its locked box in my chest and stitched it onto my sleeve. I wiped the sleep for my eyes that blocked my view of the word and stretched my body so that I would be able to accept all love headed my way and I waited. It did not take long but as the next few years marched on love engulfed me in its thin veil of beauty. It touched every inch of who I was and always had been. Sadness was replaced with laughter and lonesomeness was replaced with acceptance and joy. My life truly began and life was and still is an amazing adventure everyday I am here with my loved ones. 

Hallelujah

I hated roller coasters as a kid! My mama would try to talk me into riding them but at the very last minute I would hop over the seat and patiently wait for my mama and sister to ride and collect me at the exit post. I did try them and at one point even grew to tolerate them but the thing I disliked the most was that tick tick tick on your way up and the moment where you slowly crest over the top of the giant hill and downnnnnnnnn you would go!!!!!! My breath left my lungs and left me scared silly!!!! I remember in high school being the one person who would pay full admission just to jump over that little seat!!! I do not find myself in a position where I am having to jump over roller coaster seats anymore but there are still hills I come to in my life where when I crest and start the roll down my breath leaves me stunned and waiting for that one gasp that will bring me back to life. 

Today I felt the breath leave my lungs as I slowly read a post from a friend. Another Lupus patient lost his battle at the young age of 36. The post shared the details of his daily battle that raged on against his heart and kidneys. It took me to a few years ago when one of my sweetest friends Briney lost her beautiful young sister to Lupus. What I struggle with the most is that this will not be the last time we loose a brave soldier to this battle. Loss for us sends a wave of sadness and anger through my system and slowly as those feelings creep away I am engulfed in fear......I have this disease that has claimed another life and I am 34 and he was only 36. There is no cure and as I have mentioned before most medications we use to treat our Lupus can cause side effects that leave you wondering if the progression of the disease itself feels worse than the medication used to save your life. It is a double edge sword that cuts so deep and leaves wounds that will scar you for the rest of your life. 

I am kneeling here in front of all of you, in front of the world, asking.....begging you to not forget about us. Remember us when you are running down the street because most days we can not run to the other side of the house. Remember us when you cough in public because those germy germs wreak havoc on our sensitive immune systems. Remember us always but pitty us never. Be our friends, our support system and the ones who will love us always. Do not get frustrated when plans have to change because we are not feeling well today. Jump for joy and celebrate with us on the days we do get out into the world! Offer kind words of encouragement because those are the words that help us get out of bed in the morning. Be patient as we tag along behind you and remember to turn around and just smile letting us know you know we are still back here. Some will shake this off because they are just one person and one person can not make a difference. They are so wrong! All the difference in the world has been made because of one person standing up and stating to the world, I am here to help and I will be heard. 

As we mourn the loss of another Lupus family member let our hearts fill with comfort that our brother in pain is resting peacefully and will not suffer through this disease anymore. He has closed his eyes for the last time leaving a body that may not have always been kind to him but also leaving the world a bit better because of the contribution he made as a long time survivor. 

Fall

As a little one I used to love to play outside. The longer the better!!!!! Summer was always such a hard time for this because in Ohio days lasted well into the night and up to bed I would have to go while the sun still lit my room with a glowing haze. I could close my eyes and feel the warmth and hear the kids who were allowed to continue to play calling to me asking if I would like to play hide and seek. I would lay in bed fighting off the drowsiness and showing my mom who the boss was by pouting right up until the exhaustion of the day washed over me. As summer moved along and we crept closer to fall the days would become shorter and bedtime was not a fight anymore because outside in the cool crisp air was the sound of silence as all the little kids in the neighborhood were put to bed in anticipation of the following morning.  Fall had begun and changes were all around!!!!

As fall creeps into the desert changes are not as noticeable as the ones seem throughout the Midwest. Leaves do not change, jackets are not needed and yes, you can still swim during the day. However, in the deepest darkest hour of the night I can sneak out my back door and feel the chill that fills the air and I know at that moment the unbearably hot days of the everlasting desert summer are finally coming to an end. It is here in this moment where I stop and realize change is knocking on the front door of all of our homes. 

Take a moment to really open your eyes next time you are at the store, driving in your car or walking on the sidewalk. You will see the seasonal sections in stores turn from bright summer smiles to the warm hues of fall featuring ornate oranges, glittering golds and beautiful browns. Pumpkins are popping up on doorsteps and your neighbors are finally stretching their arms after a long summers rest. Change is seen everywhere and excitement comes in waves. Holidays are approaching and families will be reunited over the upcoming months. It is a joyous time filled with thankfulness and opportunity all wrapped up in a pumpkin shaped box.

Do not let the leaves feel alone as they drop to the ground. Take the time to exam your days and make changes where needed and find strength in the joy of this change. As you bundle up shed the layers of fear, pessimism and hurt. Breathe in the clean crisp air and let it fill your heart. Let go of pain you feel or regret that carries you from day to day. Shed your own leaves so that you too can emerge as a stronger person in the spring. Collect your memories and cherish them in your hearts. Allow the world to see just how beautiful you truly are.

Self Worth

As little kids our parents shower us with compliments and they never let you believe that anything is out of your reach. My parents always told me I could be anything I wanted and they truly made me feel special as I recall from my earliest memories. I had parents who encourage me to try out for things, join groups and be a part of teams. I was a shy little one and very clumsy but some how I was a dancer! I felt alive on stage and had no fear. I thank my parents for instilling that remarkable trait in me and nurturing it as I grew up. I knew I was loved every moment of everyday and knew that there was not a day that would ever go by that my parents would not do everything in their power for me. It was a remarkable way to grow up and this belief in myself has helped shape me into the person I have become. 

Believe me, I was no angel growing up and probably caused all the grey hairs my parents have. I fell on my face so many times and when I thought it was impossible to get back up there was the hands that loved me lifting me off the ground and back onto my feet where I was safe. I was told that everyone makes mistakes, gets bad grades and struggles with right and wrong and that it was normal. It was in the beauty of making mistakes where you learn life's most precious lessons. Lessons that will be stored in your tool box for life. 

When I put on my big girl shoes and ran out into the real world I knew I was prepared for everything because of the life lessons and love I had experienced as a little one. I was armed with knowledge that would lead to a great job and further education. I was armed with forgiveness that would need to be called on. I was armed with acceptance that I am perfect just the way I am. One thing no one thought I would ever need to know about is what do you do when you are sick and you will never get better.

Lupus is so tough. You can not see it from the outside but hose who suffer, suffer from the inside. Lupus is unpredictable and has a way of stealing your tools in your life's tool box and never returning them. Little by little overtime Lupus changes you. It may not be a change you like or even have control over. It takes your ability to function in a normal everyday life away. It takes away those hopes and dreams that your parents told you were always possible. There are moments where you feel as if all of your self worth has been taken and that wonderful self esteem you have always had is now missing. You look and look for where it may have been hidden and you pray that one day you can find it and remind yourself who you truly are again! Until then you are left with a shell of a person and you have to fill that person back up. But how do you choose what to fill it up with?????

I have chosen to fill my shell of a new Lupus body up with the smell of fall leaves, the thankfulness of thanksgiving and the joy of Christmas and lets not forget the renewal we all feel when the first tulip blooms in the spring. All moments in our lives that stir up happiness, hope and joy! Rare moments that we long to capture and hold on to for the remaining of the year. 

Yes, you change when you become sick. You readjust your expectations in life and set new goals for yourself. You will fall on your face and again you will be picked up by the hands who love you and you will carry on. You will learn to accept yourself as this new person and you will learn to love who you are even with the creeks and cracks you feel when you move. I know the stars are not my limits and I can get to anything I want and be anyone I want to be. How am I so sure you ask, well, because my mom and dad still tell me so. 

Resilience

When I look up the definition of resilience it states that resilience is ones ability to recover quickly from difficulties and or toughness. Back in May one of my amazing friends, Sara, who is such a firm supporter of me and my Lupus emailed me the details of an essay contest. The only criteria was that you had to be someone who fights a daily battle against a chronic disease and it had to be about someone in your life that inspires resilience in your fight. After some deep thinking I decided I would enter the essay contest!!!! The contest ended at the end of July and we the winners would be notified by email before August 12, 2013. 

August 12 was fast approaching and I had never received the email so I thought that I just had not made the cut and that was ok because just the act of writing my essay filled my heart with such joy! August 11 was here and I finally broke the news to Tim that I had not received the email and he reassured me that it was ok. Well, that night I received THE email!!!!!! I had won the entire essay contest with my essay title Pigtails!!!!! I was so excited!!!!! I was actually in the middle of a flare so to all of our surprise I had a surge of energy and jumped around the house celebrating my news with Tim and our buddy Brandt!!!!!

Now that the excitement has settled down I wanted to take a moment and post my essay on my blog and share it with all of you!!!!!! I hope you enjoy the story of who inspires resilience in my life every single day!!!!!! For you my Lauren........who turns five this week!!!!

PIGTAILS

Everyday I wake up and fight a battle that I can not see but can feel from my head to each and every toe. It is a battle that has changed my life and has altered what my future will look like. Some look at me in pitty and others embrace me with love and understanding. Today, just like yesterday and tomorrow I will wake up fighting Lupus.

The sun comes up and every morning and I lay so still waiting to see what my body is going to tell my brain. Did I sleep well enough to get out of bed? Will the pain and stiffness be minor this morning? Will it be a day full of creaks and cracks as my joints settle into my daily activities? No matter what the answers are to those questions the sun rising brings one consistent moment, complete and utter love and happiness. 

You see, for me and everyone with a chronic condition the support system that surrounds you is just as vital as the medication the doctors prescribe you. Knowing you are loved unconditionally and supported no matter what comes that day leaves a peacefulness that fills my heart every moment I am here. Please, do not get me wrong, there are moments of fear that I can not put into words and days where the tears flow so much more that the movements of my own body but I also know complete joy and love. In the many faces of my support system there is one that lights my face up and one that can make any day a wonderful day without sickness. This little face is dusted with baby deer spots (her little freckles), red hair and a smile that lights up my world. It just so happens she wears her hair in pigtails.

My little Lou Lou (Lauren) was delivered to us four years ago and is the daughter of my beautiful sister. She is my very first niece and has made my heart and life grow more than I ever thought one person could. She is full of energy and never stops! She swims, eats popsicles in the heat of the day and dances her way around her life. When Lauren looks at me she sees her fun Aunt Danica who loves to read her stories, tuck her into bed and sneaks bites of her pizza. To Lauren I am not sick, I am just wonderful as I am. It is the simplicity of how she sees me and the love that she continues to give that has changed my life and keeps me moving even on the days when it hurts. I want to stay healthy because I want to see her grow up to be the beautiful women she will one day be. I want to see her off to college and be there when she gets married. I want to sit next to my sister as she has grandchildren and rock the day away like all grandmas do. She makes me want to live. 

I never knew that something so small would change my life so much but the tiny little package Lou Lou comes in is an enormous gift to the world. I am so thankful for her every moment of everyday! When I am sad or hurting I just close my eyes. I see the bubbly little four year old running to me yelling my name! She is in a yellow sundress and her smile is from ear to ear. I see the love that she emanates and if I close my eyes long enough I will also feel the joy fill my heart as I watch those little red pigtails run my way. 

http://www.chronicresilience.com/2013/08/19/danica-who-inspires-you-to-be-chronically-resilient/

http://www.creativeaffirmations.com/pigtails-lupus-resilience.html

Acceptance.....Love......Hope

As a little girl you always want to be surrounded by love and friends. The thought of not being accepted by those around you can cause so much heartache and loneliness in a world you are learning to navigate through. I always thought that the worries of acceptance and longing to be a part of something would diminish as I grew older. The little things in life would wash away and would leave a clean slate to start over with in my big girl shoes. Hope filled my heart as I struggled at times knowing that through growth, experience and knowledge I would learn to leave behind heartache and only embrace what was right for me. This may have been a little girls dream that would hopefully lead her into a big girls world. However, I have seen the insecurities and need for belonging continue in my life over the years. I have grown older and I truly feel wiser in some aspects of life but the need to be happy, wanted and loved has not changed and will never leave and will always be a longing I feel in my heart. 

One thing did seem to change as I grew older.......I became sicker and sicker more often than not leaving me with so many questions and fears that clouded every moment of my life. As rocks were turned over and answers were slowly collected it became clear that the life I had always believed I would have was not going to be. Life would show me the cards it had it store for me and new hopes, dreams and plans would need to be made. I would no longer be able to teach children and would need to look into a career that would not involve contact with germy germs. That lead me to numbers and I turned my constant love of everything landing on even numbers to an education and career in accounting. Living in a home with stairs became a constant fear. Falling down the stairs at least once every few months made it impossible to continue and off we went to a home with no stairs and a peace of mind that has allowed me to tip toe around my day without falls. 

The hardest part of being sick is not what the disease does to me and my life but what it does to those who love me. I see frustration, fear and loss in their eyes everyday. I feel something in their heart that frightens me so much.......anger. Anger at what this disease does to me but also anger in regards to how this disease has changed their lives and what their future will look like. This anger is something I can not even begin to fix. It is not something I can treat with medication or cover with a band-aid. You can not rest it away or even become used to it. It something that has to be dealt with with gentle hands and an unconditional loving heart. In the end it is something I have to release to those feeling it and I can only pray for peace to overcome my loved ones and acceptance to fill their hearts. I must let go of the control I long for and the ability to fix this and again find faith in hope.

Everyday I am bullied by my own body. I have doctors who have given up on me because of the lack of funds I have to throw at them. The system has let me down as a patient and as an individual needing help. I am learning to rely on my own internal instincts to treat myself. Knowledge takes me from day to day. Luck becomes what I wish for and look for around every corner. Acceptance is something I must try to fight with. Anger is something I must let go. Happiness and contentment has become my new best friend and loneliness is a constant visitor to my heart during the dark days when I find myself battling to move. 

Through all of it one thing is constant in my heart and soul and that is hope. Hope has become the warm sun and the cool rain in my life. It allows me to grow and carry on when it is the last thing I want to do. It wakes me up every morning and drifts off to sleep with me every night. It is what i hope to leave as my legacy when I am no longer here. It is the beauty in my life and will always shine brighter than the anger I see around me in the world. It may be hard to find some days but it is always there. 

Dream

Life passes through us so quickly. Time continues to tick even when you would love it to pause for just one moment. Therefore it is so important to stop at least once everyday and look around you and take in the exact moment yo are in. We are all so busy that we sometimes forget to stop and smell the roses. I stay at home right now and yes, I tend to keep myself very busy and my loved ones will even say that I overextend myself and push my limits. However, there are moments during the day where silence creeps in and I find myself lost in my thoughts. I remember moments from the past, dream about the future and take in the present. So today during one of those quiet moments I asked myself........where do I see myself in five years?

I see myself living a happy life surrounded by the most amazing friends and family, just as I am now. I see that family growing as new ones are born and I see my heart aching remembering those we have lost. I see myself growing as an individual with an autoimmune disease. I want to continue to educate my friends and family as well as strangers. I want to spread awareness and show the world that someone who has a disease can live a beautiful life that is fulfilled with every hope and dream one can have! I see myself growing with my better half and chasing a pup through the yard! I can not wait to continue to watch my Mia and Lou Lou grow into the young ladies they are meant to be. I am excited to be a part of my dear friends families and to chase around their ragamuffins until I can not take one more step! I long to spend more time with my family and in the future I see us connecting the miles we are apart a little bit more often. I see life in my future. A life filled with ups and downs but I also see excitement around every unexplored corner. I see time moving past as I wish it to slow down. 

Today I challenge all of you to stop for one moment. Sit down and allow yourself to breathe in and take in the last few days of summer. I challenge you to let yourself escape and think of the memories you have that make you smile. Feel them fill your heart and transform your day. Most importantly allow yourself to dream about the future. Remember that you choose the path you take in life and you can create your destiny. More importantly you can choose happiness and overcome adversity. You can choose life and choose to the live that life and surround yourself with complete unconditional love and pure happiness!