Time

I search the shelf for the perfect one. You know, the one you always find yourself going back to. One that calls to you deep in the dark night and in the stillness of a sunny day. Something that can take you back to where you have been just one more time. There it is. In the corner you reach in and pull it out. You swipe your fingers across the top and remove a small layer of dust. Has it been that long? It is here now and you walk to a place that holds you tight. The safety you feel in the moment before you open it, you pause, this moment......this pause......it is just for you and yourself. Before you begin you prepare your mind and body. It is time to feel the familiar and relinquish yourself to the past.

In one swift motion time has paused and flashes move swiftly before your eyes. Moments before and after are of no importance at this point. You search for that one piece of time that has collected a bit of dust but has not yet lost the power to transform. No image is needed because they have been permanently etched into your heart where they are kept for a lifetime of safe keeping. Time will not age, the past is never lost and the future is just that......the future, no room for it in the beautiful here and now of today.

My cheeks warm up to the touch as the sun grasps my face. The golden hues surrounding me is not a halo but the illusion of gold where light has intertwined with my hair. Every tiny toe grasps the cold damp grass and they hold on to the promise of a new day. Sweet smells fill my senses. I reluctantly release each tiny grasp my toes have on the world below and I leap through the summer day. I feel the scratches on my legs that can only come from the brushing of corn husks tall and strong. They curl around me as if they know that today they must protect me from the rest of the world. Over head a small plane grazes the horizon as it flies low to catch a glimpse of the field. They can go as low as then need to and my hiding place will never be discovered. I am safe. I am protected. I am innocent to the world around me.

Time passes quickly and the croaking of the toads and squeak of the crickets song slowly creeps in as the sun tip toes out. The sun blanketed field looses its light and is replaced with the magical glow of fire flies. The running stops and a night dance is performed for an audience of twinkling stars and the wind claps in approval as you take your final bow of the day. A memory has been made. Another moment in time is kept forever.

Slowly I close the moment and bring it to my chest. Inhale.......exhale. There is the empty slot that moments ago homed a moment in time. Slowly it finds it place back on the shelf. As I place it back I close my eyes for one more glance and the moment is gone. 

The present rushes back over me. Heaviness of years of fighting and struggling against an invisible looming shadow is felt once more. The movement is painful and it is time for another dose of medication. I open my eyes and look around. I am right where I was moments ago......in my bed, in my house and in my body that long ago lost the ability to dance with the fire flies. I slowly emerge from the safety of my bed with a beautiful heart that shelves novels written through a lifetime of dances, laughter and love. It is the only shelf in the world that is completely and irrefutably mine. 

Phone Call

There are certain moments in life when you prepare yourself for amazing moments and there are times in your life when you are bulldozed over in shock because you were unable to prepare yourself for the moment you are facing. One thing is certain, the outcome of how you view these moments is in the power of your heart. You can hold on to things with anger or let go in sweet relief as time passes. The choice is yours and today you can choose to make more room in your heart for something amazing to come in if you just let go and find some peace in the separation from the good and the bad.

Yesterday I received a phone call from the CDC. I was told over the phone by a stranger that I had been recorded as having Valley Fever in late 2012. A diagnosis that was never confirmed by the doctor running the tests. All of the reported cases are being studied to see what the long term complications are for this now chronic condition. I was asked about my symptoms during the first signs of sickness and what symptoms I am currently still having. I will continue to be studied over the upcoming years. I have now joined a small group of people who were diagnosed with the illness, never informed and never treated. Some are alive and some sadly have passed away from complication that were a mystery to everyone even long after the lungs stopped breathing but are now being discovered as lingering complications of Valley Fever. 

When I received the news I told the young man on the other end of the line that there must have been a mistake because I was never informed of this and I was being seen at one of the top facilities in the nation being taken care of by a doctor who I had so desperately waited to see for months. This was not possible and the mistake had to of been on the other end of the line that day. After receiving the information, confirming the doctor and the facility it slowly sunk in that the trust I have put into the medical community was lost. For a moment I felt betrayed by the one person who I had given my whole body to in hopes of trying to solve a mystery and searching for the hidden clues lost deep inside my blood, bones and organs. 

Following this period of time in 2012 I have been hospitalized more times than I can remember. I spent a year on antibiotics and steroids. I left work hoping to find a healthier me only to find a year and a half of struggle and pain wondering why I am sicker now than I was two years ago. I saw friends and family look at me and give up on me in the scariest moments out of frustration. I was left struggling for a breath and an answer. I thought to myself that I was crazy. There is no way I am sicker now than when I worked. I just did not notice the flares as much when I worked. However, time after time I found myself in bed struggling to complete the simplest of tasks. I missed out on amazing adventures and even missed my baby sisters wedding because I was unable to travel from Arizona to Ohio with my lung infections. My life changed in a drastic way and until yesterday I was still left in the silence of my thoughts wondering what happened to me. Every issue, every symptom and every iv poke was due to Lupus and no one had any other reason to believe differently..........that was until yesterday. 

How do you move on from this kind of shock? How do you instill your faith back into the medical community after someone chose to not make a five minute phone call and treat the underlying condition? How do I get back the year and a half of unanswered questions and moments in life that will forever be lost? I don't. 

Today I woke up and I am blessed that the phone call yesterday was answered by me and not my family mourning the loss of a loved one from something that they could not explain. I am thankful that finally some light is being shined on something that was left in the dark for so long. Monday I will walk into the fancy pantsy facility and demand all of my records from every doctor who saw me and walk away knowing that the best care is not always found in the most obvious of places. Testing will start and if needed treatment will begin. My life and health will be monitored by those collecting data and hopefully my unfortunate situation will not happen again.......better yet, I will make sure it does not happen again. Hopefully once this has passed I may actually be able to go back to a life full of adventure and full of hope. My body may finally receive the break it so desperately needs. 

Most important today I release the anger and frustration that clouded every thought that that crossed my mind yesterday. I will make the choice to let this go and make room for something full of hope and happiness. This does not have to change me but instead can guide me to a more peaceful place. I can let go of the bad and take in all that is good. It also does not hurt knowing that I can stomp my foot and yell to the world......I WAS right and I am NOT crazy!!!!!!!!

My daughter...........

A letter to my daughter,

You are not even created yet but in my heart you have always existed. You have been the dream I have had before I even knew how to dream. We were destined to be connected forever and it is a connection that will never be separated by time, distance or even death. You will emanate all that is good from me and from you daddy. 

Your family is going to be odd......that is one promise I can make you. You will not be able to return to school after summer vacation and tell stories of lavish resorts and coastal towns. You will return to school full of back road adventures and blisters on your hands from helping others. You will see all that is good in this world from the seat of a truck and will leave your very own footprints in the dirt of the world. Memories that will fill your heart will be those taken off of the beaten path. You will see wonders that most people in this world will never see because you chose the path less traveled. You may lack in the number of times you were sun burnt hanging out at the pool but you will never be able to count your blessing on the total amount of fingers and toes you have.

I apologize now for the pain you will see me in not because you will feel sorry for your mommy but because you will see so many classic movies over and over again and will have hundreds of slumber parties with me on the days I can not get out of bed. There may be moments of your life I physically miss but I promise you will always know that I am there in your heart and will be waiting patiently for a summary of your life's events back at home. You are never to look at me with pitty in your eyes and most importantly you will never look at yourself in the mirror and feel sorry for yourself. You have been born into a strong family that always sees the glass half full and while we are at it, you even see it through rose colored lenses.

You may not have come into this family in the conventional way or maybe you have but no matter what you have been and always will be mine. We have a destiny together that will include nights rocking you to sleep, hundreds of books to be read by nightlight and snuggles that will never end. There will be moments you do not see. I promise to stand over your bed and marvel at your tiny fingers and the way your lips move in your sleep. I will watch from the car as you walk into school for the first time and I may not make it out of the parking lot before you finish for the day. I will do your hair for your first dance and I will keep your daddy on his best behavior so he doesn't embarrass you but I will not keep him from staying up until you walk back through the door safely. I better apologize now for your daddy's behavior on your first date......the gun may have been over the top but you must understand, it is a family tradition, just ask your cousins Lauren and Mia. There will come a day when I have to let you go but do not be afraid. You can always turn around and I will be one step behind you. Sometimes you will not want me behind you but you do not get a choice in that matter. It will drive you crazy and there will be late night calls to your Aunt Holly and talks with your daddy about how your mama drives you crazy and smothers you. Just accept it early on.......it will make it easier on both of us. 

I will watch you walk across the stage the day you graduate, down the isle the day you get married and through the from door when you start your family. I promise you I will teach you everything you need to know to survive through this life because life will be hard. It will knock you down only to hold its hand out to help you back up. Your heart will break and I wish I could protect you from this but you will be a better person because of your challenges you will face in your life. 

You will grow into a strong and independent women who will one day write a letter to the thought of her daughter. I hope that your journey through this world is filled with more good than bad and I promise when you are brought into this world it will be on a foundation made of love. I long to meet you and miss you before you are even gone. I have faith you will be here soon and will dance through my life twirling all along the way to the very beat of your own drum. Until then, I close my eyes and think of you. I see you with golden blond hair and blue eyes and a giggle that can be heard around the world. You have changed the course of my life already and have created a map only you can navigate me through. You are my only child......the love of my life and the one dream that will come true.

Love you before you were ever born......

Your Mommy

Solitude

There was a moment in time where I was secluded in a hospital room. There had been a big red X on my door letting others know that they needed to stay away. Inside was an unidentified yuck that could spread from person to person. No one was to enter or leave without the permission of the doctor assigned to my case. Inside the room was a girl throwing a fit because of a mask that had to be worn. I could not breathe to begin with and if you have ever had one of the medical masks on, well, lets just say that did not help the breathing issue at hand. All I knew was I could not breathe and I just wanted to feel better. From the outside looking in they knew what laid beyond that door marked with the red X was the swine flu and there was nothing anyone could do but wait and send me home with Tamaflu hoping that I would not become another statistic in the loss of life counted that year. 

The life of someone with a chronic disease is one of unimaginable terror and unbelievable highs. You feel terror that shakes you to your core on a daily basis........the terror that the pain felt right at this moment could be a sign of irreparable damage that one could not recover from. Breaths taken that begin and end in a flurry of confusion and questions that no one can answer........why does the simple task of breathing hurt so much? The highs occur on a level that only those of us who face death and a battle for life can experience. The celebration daily that occurs when your eyes open from a fitful sleep or the sigh of relief heard around the world as you settle in and come to the realization you have made it through another day. 

What most do not see and the secret of "special people" we keep is one that weighs so heavy on our minds and exhausts our hearts. The secret of solitude that is felt in a room where we rest alone and the solitude we feel even in a crowd of many. Solitude seems to be one of the most prominent symptoms for us. With a disease that never mimics anothers course, solitude follows all of us like a lost puppy searching for a permanent forever home. I find myself running from it every moment of everyday. I wake up exhausted from trying to sneak away from it in my moments of dreaming. But just like the dream you can not shake after having it, solitude reaches from the dream world and tightly grasps my awake mind. 

This shadow of solitude has been following me and stalking my every moment over the last few months. I am left feeling as if I live in the dark and the world is turning around me while others point and laugh at the expense of me and the disease that has taken so much already. Those who claim to understand run back and forth between the laughter of others and the darkness of the solitude felt by me. Others try to bring me into the circle only to let go once they see the grasp of the disease will never loosen its grip. 

Scarlet letter........no, but a red X warning others to not approach is tattooed on my soul. Others see this and do not even approach. Those who approach have been ushered out of my life due to fear that the solitude will be to much and that possibly it could grip their soul and heart. It is easier for others to walk away than to slow their pace down and walk beside someone with limitations. Next time you turn away from someone like me remember solitude can be cured with an addition of only one. A simple hand that reaches from the crowd and steps closer to the center of the spinning top of life. Disease has already taken so much, please do not allow it to take our sense of purpose as a human being. We love life more than you could ever imagine. Yes, our pace is slower but at the slower pace one can experience the beauty of life once you truly stop to smell the roses and see the true blue beauty of the sky. You see, we have more to give than to take all we need is someone to decide to go against the grain of what is expected and step to center and grasp our bodies and hearts and hold on and never let go. We will take you one the ride of a lifetime. 

New Angel

As I log on to my social media account I am bombarded with smiles of little ones and hopes of a beautiful weekend with snow rolling in tonight. I am reminded that there are people out riding and running before I ever opened my eyes. I see the blessed news of births over the long hours of the night and suddenly I am drawn to a picture. It is a picture of a spunky women with pink hair and a blue shirt. She is happy in this picture and as I scroll down I see more of her on her mountain bike riding through the twists and turns of the forest with the grace of a butterfly. Her smile looks as if it holds a special secret no one else will ever know.As I scroll down and see more and more of her I am taken back but the sudden realization that this angel on earth earned her mountain biking wings today. 

I did not know this women personally and have never met her. What I do know from the people I know who knew her is that she touched so many with her courage and fight. She showed grace and dignity in the fight for her life. She battled her disease with the strength of ten mountain bikers but as so many of us know, our bodies can only do so much and hold up for so long until we to are called for a release and a much needed rest from the weary ways of the world. 

To the women who touched my life today as she left hers here on earth I say thank you. Thank you for fighting and showing courage through a tough battle. Your battle does not end here. Those who are left will pick up your swords of courage and swing them everyday in your memory. Now is your time to rest your weary body and soak up the warmth of the sun on your forever mountain while the wind whips through your new hair. Smell the flowers and taste the rain and whenever you hear a crowd in the distance don't be frightened, just know that everyone down here is still rooting for you to win your never ending race. 

Get Better

Over the last few years I have ran into many challenges living with Lupus. I have not been able to work, travel as much or even socialize with my friends. Some of this I have accepted but some I just struggle with everyday. There will be good days where I can just laugh through the day with a giant smile on my face and others I need to sulk a bit and have a good healthy releasing cry. With all of the sacrifices I have had to learn to make and changes I have had to accept there is still one that seems to always take me off guard. This would be my tolerance for pain.

Yesterday I had my first official emergency room visit in 2014. I went in with breathing issues.......shortness of breath and an ache in my lung that just would not go away. It started about four days ago and I thought I could just wait it out but by yesterday it still was not getting any better and was possibly starting to get worse. So, I put on my best pajamas and lugged myself to the hospital emergency room.  

At first the doctor told me he was pretty sure it was pneumonia due to the crackling he could here in my lungs. We would need to do some lab work and have a chest x-ray done. The chest x-ray was clear and so he was a little concerned and decided that we would need to do a CT Scan of the chest. For those of you who have never had a CT Scan before they shoot dye through your veins so that everything lights up with contrast and we can see clouds of pneumonia, blood clots or any other type of inflammation. This dye actually sends a hot sensation from your head to your toes and it feels like you are peeing your pants!!!!!!! I always tease the scanner man that he better watch out because I know one of these times it is going to happen.......I am going to pee right on the table!!!!!! At least we all get a little chuckle out of a serious situation. 

After all the tests were said and done we discovered I have a bout of Pleurisy in my right lung. Pleurisy is inflammation between your lung and chest wall. The doctor told me it is like sand paper rubbing whenever I breathe in which explains the horrible pain. It makes it very difficult to breathe due to the response your body is receiving whenever you take a breath. I have to actually force myself to take deep, clear breaths to help the healing process begin. Along with my breathing exercise I am back to being best friends with my arch nemesis.........STEROIDS!!!!!!!! AHHHHHHHHHHHHHHH!!!!!!!!!  Overall I am going to be just fine and because Pleurisy is common in Lupus patients the chances of this now being another issue we will have to constantly look for behind every corner is high. 

The hardest part of this entire situation over the last few days is that the pain is severe with this condition but I am so used to pain that I had no idea my pleura lining was so inflamed. Over the last few years this has been such a challenge for me. I will let kidney infections and bladder infections go way to long without treatment not because I am being stubborn but because I do not feel the hard pain others feel because of the constant pain I am always in. My mama told me she thought I was getting better and not complaining about the pain as much but in reality I just could not identify how bad the pain actually had gotten. 

Someone who has a disease that causes chronic pain on a daily basis becomes exhausted at the task of explaining the constant pain they feel everyday. To us we feel as if we are nagging or bringing everyone else down. We tend to play down the pain overtime leading to us actually altering our pain tolerance. The pain is there and most of the time it increasingly gets worse. The awareness we have to have with our own bodies is constant and the signs have to be watched every moment of everyday. Resting must be done even if you have to force yourself and pain diaries now are kept to share with family , friends and doctors. It is just plain old exhausting!!!! As the patient living with the disease itself you are constantly frustrated because you no longer can truly tell what is going on in your own body and our family members can become frustrated and may not understand because if it was as bad as the doctors are saying it is then why did we not speak up!

Well, the answer to all of this is simple.......patience. I must be patient with myself and be vigilant in regards to my disease and little signs that may not seem to be important to the average person. Family members and friends..........patience. Take your time with us and try to understand what we may be feeling and if you are frustrated with the situation trying putting yourself in our shoes and you will feel what true frustration feels like. Lastly, it all comes down to working together as a team. The patients, families, friends and the doctors, everyone has to constantly watch their loved ones and be a little more sensitive and aware to the every day wobbles and bobbles and pain that sneaks in and sneaks out. Together we can take this disease and have control over it......or at least have the upper hand!

Perfection

Spending time alone through out my life has always been something I have struggled with. I have had a difficult time finding piece in the silence of loneliness. I find my breath leaves my body in the stillness of an empty house. However, recently time has stopped moving so quickly and silence has overwhelmed my life. I have woken to the common feeling of the empty house and have stepped out of bed and touched the floor of a new day trying to find a way to find hope and solace in this life I am navigating.

Life tends to change so quickly and what used to be no longer exists. The familiar laughter that filled the still air has grown silent. I hear the birds chirping and feel the sun on my skin but shadows have crept into my heart. I want to hear the birds and dance to their song and I want to bask in the sunlight and feel the life resonate inside of me once again. I have been fighting so long to just live everyday. I have been fighting to hold on to everything surrounding me and now I am left looking around in an unfamiliar place trying to grasp to something.......anything that was once familiar. I find myself back in the scariest place of life.......an end and a new beginning. I am once again faced with a choice.........do you go into the tunnel and come out damaged with a distorted view on life and love or do you choose to come out of the other side scratched but by no means broken? 

In true Danica fashion I have chosen the latter of the two. I am slowly learning to find myself in the silence of the day. In the stillness I have found beauty within myself. I feel the comfort of my fuzzy socks and I know that I am grounded and I am still who I have always been. My favorite time of the day is dusk when everything seems to glow. My love for fish tacos is still alive and well. I now remember how much I love the bowl of ice cream right before bed and yes, I stir it so it is completely mush but darn it I LOVE IT! Most importantly for the first time in a long time I actually feel beautiful just as I am. Not because someone has told me but because I feel it recreating in my soul. I have slowly felt the glow of my smile return. The tears that have fallen so often have dried up and what is left are two glowing cheeks that feel the hope in everyday. My heart is full of joy in the possibility of what lies ahead. I will not give up and I will not quite but I am choosing to no longer fight. I have found peace in the darkness and have found comfort in the dawn. Once again in the commotion of life I have simply found me and that is more than good enough.........that is pure perfection.