Holiday Bells

Tis the season!!!! It is the most wonderful time of the year, or so they say. I am one who adores Christmas and would celebrate it three hundred and sixty five days a year. My best friend Krya and I start festivities in the summer when the heat bares down on us. We turn on the Christmas music and turn it up until the little ones give in and dance through the house with us. It is a time of year we long for. Not only does it give us a respite from the smoldering summer heat but allows us to rejoice and reunite with our families once more. Soon Greg and I will be heading out for a trek cross country that will end with open arms, laughter and love. As I address Christmas cards to my loved ones I am reminded of how hard the season of celebration can be for individuals like me who suffer from invisible diseases such as Lupus.

My Lupus tends to hit hard this time of year due to the around the clock celebrations, busyness that follows us like our shadow and the stress of making everything just perfect. I am reminded today of the frustrations we can all feel during this beautiful time of year. I am tying bows that will close my Christmas cards on the quest for card perfection. I am trying not to loose my holiday bells as I fight every loop I create and search for its buddy on the other side. I lost all feeling in my fingers almost two years ago to the date due to severe inflammation in my body tissue resulting in nerve damage. This makes tying bows quite a challenge!!! After a few flying cards I take a break so that those holiday bells I am on the path to loosing stay with me allowing me to giggle and enjoy the holiday cheer in my heart.

For my grown up Christmas wish this year I would like everyone who knows someone who fights so hard everyday of the year with a disease that you may not see find some much needed help from their friends and family. If cards are sent out a bit late and Santa finds his way to your house before the card does, find joy that your holiday was extended by a few days. If presents are not bought due to the inability to shop just rejoice in their presence because it has been a challenge all year just to make it to this point. Those Christmas cookies we all love, well, bring them lots of them!!!!! Ok, maybe that one is solely for me but who can resist those cookies?!?!?! It is time for family and friends and those of us who suffer need you everyday of our lives but we may need you even more during times like these. We long for normalcy and dread the look of dissatisfaction from others. Please be kind this holiday season and show compassion and love and reach out to those who need it the most. Most important, remember that this is not just a season for giving and receiving but a season to rejoice with those we love and find comfort in the familiar. 

From Greg's and my home to all of yours....happy holidays and may you find peace, love and joy this holiday season!

New Beginnings

I slowly boarded the plane and closed my eyes wishing that distance would remove this hurt in my heart. The pieces lay scattered all over my life and family was the healing presence that I needed the most. The brisk winter wind whipped across my face as I left the plane. It took everything I had not to crumple on the jet-way from emotional exhaustion. I held myself up and thought to myself will this pain ever end.

The mist is wiped from the mirror as I get ready for bed. Staring back at me is the same girl that walked off the plane looking for solace in the distance that separated my life. The hurt that I thought would never leave my heart has become just that.......pain from the past the is a distant memory today. I look around and I see our new home and find myself in a different world.

A year has gone by and I feel as though I have aged in a matter of months what seems like it would take a lifetime. I have been broken only to stand up and realize that there was absolutely nothing about me that was broken, maybe a little scratched but not broken. Today as I look at my reflection I am healed and the pain of yesterday is a moment in the past. 

I have grown up so much over the last year. I have accepted people just as they are and wish for them to be nothing else. I have found strength within myself where it had been hidden for so long. Every morning I wake up and I am excited by the endless possibilities of what the day may hold for me. In reclaiming myself I have discovered love that I never knew existed. I have rediscovered hope, joy and love. 

I have found new acceptance of my Lupus and realize that it is not a condition of myself but an extension of who I am. I have seen scary times in the emergency room over the last seven months but in return I have felt the healing power of my own energy from within. In the next year I am prepared for surgery and have accepted the new challenges Lupus has bestowed upon me over the last few months. I do not feel discouraged at all but instead feel ready to battle anything my disease throws my way. I am not defined by Lupus, I am defined by who I am with or with out it. 

Thankful

I did not come from a charmed life. I grew up in a two bedroom apartment in my younger years with my best friend and arch enemy, my sister. The two of us were showered with unconditional love at every turn we made in life. My mama would choose to go without new things for years so that we would not have to wear shoes with holes in them to school. She scraped all of her extra money together so that we could grow up as normal as the kids down the road in the beautiful housing developments we longed to live in. My sister was the athlete at a young age stretching her talents from soft ball to the much dreaded summer of soccer while I danced and twirled through the years. Hand me downs were like Christmas and at times were our new clothes for the up and coming school year. If you could miraculously transport yourself back to my child hood I think you may have a preconceived notion of fear and anger and jealousy for those around who had things we did not. However, I hate to disappoint you because that is the last thing you would ever find.

If you were to ask us then if we thought of ourselves as poor and helpless and needing so much more than what could be provided we would stare at you dumbfounded. For we thought we were the richest children alive that had everything they needed and those small items we wanted, they were just wants and on very special occasions those wanted items would show up miraculously in our lives. As we grew up and family dynamics changed our simple needs never did. 

This month is  month of giving thanks for what we all have in our lives. Love, acceptance and the presence of daily on going laughter. I am blessed to have been brought up the way I had been. I knew love and that love continues to grow stronger everyday. I find old relationships being renewed and building again from the ground up. It is here I feel true unconditional love that never wavered even when I through it was completely gone. I may face a rough road ahead with my Lupus but I would never wish it away from my life for it has helped to create a more solid and powerful simple me. I will bear this disease with grace, honor and unwavering strength because I know I am never alone. I still find that unconditional love around every corner in my life now........even if it is thousands of miles away. 

My thankfulness overflows through my heart and out to my loved ones. I am happy and proud of where I come from and the parents who raised me to be the strong, independent women you see before you today. 

The Forest

It has been a year since I ventured into the overgrown forest. I was drawn to the darkness and simple silence that allowed me to clear my head. I was looking for a place to gather myself and stay until I could emerge whole again. I wandered in one October night and hit the ground so hard. I crumpled into the fetal position and found myself face to face with the moss that found a way to grow out of the harsh, dark and hostile forest ground. It was so soft to the touch and in the distance I could hear my voice reassuring myself that if this tiny bit of life can grow here then surely I can also grow back to myself. I positioned myself silently still and watered the ground below my face with a flood of tears and sorrow. I moaned as the pain took me away with it and yelled out words of hatred in heart breaking agony. 

Hours passed into days and those days merged into weeks that eventually rolled into months. I was tortured emotionally as I was coaxed out of the woods and into a clearing on stolen promises that would break with each step I took. The only truth that gave me comfort was knowing that I had found my special dark place that would shelter me from sight allowing me to ignore the ever present voice on the other side of the clearing. Finally after all the fight had been drained from my soul I found my way back to the place where my moss continued to grow and I curled up to it one last time in the dark forest that would now become my home. 

A year has come and gone. I am emerging with small steps a bit better but not whole just yet; however, I make progress everyday. I am healing a little at a time and positive thoughts seem to come at me from every corner of my life. Where there was darkness I have found small rays of sunshine that break through the canopy above. I have been in this position for a year and have felt the winter chill through my bones, found wild flowers strewn on the floor of the forest during spring time and embraced the summer rains. Now as the trees shed their leaves and prepare for another winter I have shed my own fears and leave my sorrow and pain in the forest. The darkness no longer protects me but hides me and I am not one to be hid. 

It is time to take a step into the clearing and walk the long and winding path back to the home within my heart. I now prepare for new beginnings as I have left the past behind. I welcome the winter months with new love that warms my heart and soul. It is a moment I never thought would find me and now that it has I feel ready to dance into tomorrow.  Sadness will find ways to creep into my mind but the utter wonder of what is still to come pushes it to the side and the sting is a little less harsh this time around. 

Canyon Below

I approached the edge carefully. All that separated me from the abyss below was a few ledges but after that, after that I would be lost to the world and swallowed by they canyon. As the sun set I propped myself on the edge and dangled my feet over the side. I was the closest I could have ever been to nature at this one point and strangely the closest to death but you can not think that when you are swallowed up by the natural awe of one of the seven wonders of the world. Most explore the canyon behind steel posts that keep tourist alike from getting to close to danger. Of course that would never be acceptable to me. My adventurous soul drew me to the North Rim where time stood still as well as my feet. There were no tourist. You could hear the bird that is catching the updraft begging for a break from all its travels. No snapping of cameras on this side just the gentle lullaby of the wind sweeping through crevices and cracks that have developed over thousands of years. Here I am at peace. My tracks are fresh and it has been at least three months since another human being had approached this very same ledge. I find joy it that small tedious fact. Tonight this canyon, this ledge is all mine and I only share it with the birds dancing above and the whisper of the wind below.

The first time I approached the edge of the canyon I remember looking out. I never knew where to look because from the top to the bottom the view was ever changing. I could not wrap my thoughts or my senses around what was laid out in front of me. It was an experience that would only be truly recognized once we were miles away. The thin veil that seemed to create a haze over everything you saw is now removed and the enormity of what you experienced hits and in one moment the scale of your existence is felt and tiny footprint you will leave is even smaller than you imagined. It is a feeling that I hope everyone will at least feel once in their lives.

Today I find myself at the edge of my own canyon. A canyon that has been shaped with the forcefulness of tears and nurtured by the light of a smile. The layers are measured in days and the ever changing landscape has seen many seasons of breakdown and growth. The constant piece that has not changed is a tiny ledge I have stood forcefully on as I braced for every storm that has rolled through my canyon. As I waited and wondered I watched life go on around me stuck on this ledge of never seen change. That is until now.

I slowly step off of my ledge and find solid ground where once it never existed. I slowly step back, one foot behind the other. As the distance grows between the edge and myself I can start to see the thin veil that has separated us. As I find myself farther and farther away I can slowly feel in my heart the movement that has been frozen in time. I feel my heart beat and can close my eyes and hear it ring through my ears. My breath has been stolen and I can feel the impact of my knees on the dirt and I look up in a soft plea. Finally the echo of myself no longer exists and the voice that echoed for years has grown silent in the prison of the canyon walls and is now being heard by many.

I see it all and understand now what the purpose of everything has been. The time that slowly tiptoed by was all for gathering and processing. Information exchanged between everyone while my life stopped and time moved on without me is now complete. Denial after denial was met at the door with hearts heard breaking around the world. I kindly say no more in a whisper only this moment in time can hear.

Now is the season of healing as the wait comes to an end. Life plans can be made, decisions can be discussed and finally the life seen moving so quick around me stops suddenly. I look out the door I opened suddenly in front of me. One look back takes me to the sight of the thinning veil and as I gaze out the door I see the world I have had to remove myself from for years. Without a moment of hesitation I step onto the sidewalk, close the door behind me and as it disappears into a memory the world bustles around me. It explodes in sounds, smells and everything my little eye can see. Finally once more I find that I am one with the world around me. I am one face among millions with nothing calling attention to me and it has never felt so good. It is time to now give back and truly start making my tiny but significant mark on this vast, ever changing world.

Old Friend

The cool water is inviting as I gaze at my reflection in the mirrored surface. I lean over slightly and as I gaze into my own eyes I reach out ever so gently and skim the water with my fingertip. The figure eight made ripples outward. My gaze never leaves my face and I see the ripples slowly distort the image looking back at me. I am unrecognizable. I can not make out my own mouth, nose or the eyes I was so intently staring into. In one soft, swift and gentle motion I no longer no who I am and look into the rippled surface for a clue as to who was now looking back at me. 

I squint hoping the narrowed vision would lead me to answers but only left the distorted image smaller and even harder to focus on. Slowly I step away from the waters edge but never loosing the rippled image. Step after step I slowly see clearly that in fact the image looking back at me was my own and that it may be different but it is in fact the same blue eyes, the same mouth that smiles so much it hurts and even more important , now that I have stepped back a bit I can see more of who I am looking at and I discover once again I can see my heart  right back where it belongs, permanently sewn onto my my sleeve. 

Old friend I thought for some time that I had lost you to the coldness of the world around me. I looked for you on the dark endless nights, the days spent being poked and prodded and lastly in the dreams I fought through chasing you from one memory to another. I am sorry to have doubted you. You never left. I just was unable to open myself up to see that you in fact were always with me. You are larger than I remember, beautiful and accepting. You are not scratched but in fact whole. I can feel you longing to find the endless love that lasts a lifetime. You are ready to be given once more to someone for safe keeping. With every beat you open us up to the world surrounding us. Finally we are again able to take in everything with endless love. Feeling you once more leaves me with wonder and hope. 

Looking around you will notice that things have changed. A new world is awaiting our arrival and someone longs to hold us tight. Alone is no longer a feeling that fills up our days and nights. Time no longer slowly creeps but is swept away with new memories to lock away for safe keeping. We are on a new adventure. One that holds so much promise and so much love. I am not afraid and you should not be afraid either. Let us embark on new milestones and plan for a world full of possibilities. I promise I will never loose sight of you again, for you make me whole and complete. Hold on tight because you and I...........you and I are just getting started. 

Hold On

I watch the ocean of my life pass before me. I see wave after wave crest the shore. I brace myself for the familiar pain that I can not seem to escape. Everyday I am reminded of loss and a feeling of being broken and held together with only the faintest amount of glue. Every day that crack opens again and the emotion that has been damned up runs free and no amount of protest will hold back the flood that breaks through the patch formed over my heart. I reach for the closest object and hold on tight and brace for the moment of impact. A moment that will remind me that healing is a continued process that can not be rushed, denied or ignored. So I stand tall and firm and roll with wave after wave just waiting to resurface and catch my breath once more knowing that it is only a matter of time until the next set hits. 

I am not a stranger to pain and suffering. I deal with physical pain every moment of my life and emotional pain has come and gone only to return when I least expect it. The physical pain is something I have accepted and wear it as a badge of strength and courage everyday of my life. I struggle but I persevere at the exact same moment I am in the depths of agony. For this I am proud of. Medicine makes it ever so bearable and allows me to continue to look forward to the next day in hopes that tomorrow will be so much easier than today. However, the emotional pain takes my breath away and feelings of loss and fear can not be treated with medicine, only with the patience of passing time. It is in the darkest hours of life I find myself smothered in emotional defeat reminded of what has come and what has gone. It is here that I am at a loss for words and long for the darkness to subside and for my  heart to fill with hope and love once more.

Everyday I am reminded of where I was this time last year and what this passing year has dealt me. I have had heartbreak that I never thought existed. I have longed for sleep to take me into the next month just so I could wake up at the end of this chapter in my life, scratched and bruised but on the mend. The more I longed for that moment the more I was reminded that recovery takes patience and time when you are physically and emotionally healing. Everyday I remind myself that I have plenty of time.

Today for a brief moment I felt what I have been longing for over the last year, a moment that made me sit up and take notice. Today the hurt was a little less than yesterday. Songs are no longer taking me back in time to a moment in the past. New adventures no longer remind me of the old. Memories of the here and now are becoming more prevalent in my life. For once in a long time I long for the future, not to escape the pain but to enjoy the pleasures of everyday life and those who share it with me. The sadness of yesterday is fading and thoughts of the past no longer leave me powerless but instead give me strength to carry on just as I am. I know the waves will continue to roll in and I must be prepared for the pain but it will lessen more and more everyday until the past no longer haunts me but occasionally reminds me of someone I used to know. So, until the waves have calmed I may as well make the best of a situation and learn to surf through life's waves with two feet steady on a solid foundation of self acceptance and love.

Gravity

Again we must meet. In the darkness of the night you emerge from the shadows of the corner where I had hoped to keep you for some time........maybe even forever. Yes, I know that is a rather lofty goal but what is life without the greatest hopes and wishes to lift us up when everything starts to drag you down. You are an addiction that never will be shook and in my lowest of low moments in my life I will rely on you and the strength you give me through medicinal purposes. I run from you, cry and swear to the heavens for making you come back into my world that was so silent and calm before you reentered. You allow me the moments of internal peace where my body struggles less against itself but with this wonderful gift given I am reminded it is no gift at all but a burden to be carried when the slightest breeze brings you to your knees in pain. Why must I need you , love you and despise you all in one swift moment of the heart?

The breath has been hard to take in. I can only imagine it feels as if you were drowning from the inside out. The lungs fill with fluid and slowly weigh you down. The breaths become swifter and harder and leave a lingering fullness and burning that radiates through your entire body. Moving from the bed to the bathroom has been a task that I have struggled with over the last week. I have to stop at a beautiful spot in the hall and admire the many shot glasses that Greg collects and displays. I focus on one specific colorful stein and breathe in and out until I finally can feel my toes grasp the carpet again, I now know I am ready and will make it to my final destination and with a small pause on the return trudge I stop once more admiring yet again his collection as if studying great paintings from centuries ago. All because my lungs are not functioning the way they need to in order to support the rest of my body and the oxygen it needs and is being deprived of as we speak. 

As I try to focus more on breathing over the days the cough is harder and harder to loosen and I finally see the one thing all Lupus patients suffering from lung infections dread.........the unmistakable blood that has traveled from the depths of your airways and surfaces in the whitest tissue. I double take because this can not be happening. Something is wrong and for the first time it is not the red bright blood of irritation but blood that has settled in the lungs itself and have been waiting for me to physical bring it up. I stare in shock, silence and then a cry. A cry I never wanted to ever have to hear myself make.........something is wrong internally because I am now coughing up blood. Blood that should not be there and does not belong in a healthy viable lung. The all embarrassing question rings in my head and breaks my heart........it is a question some of us will have to ask while battling a disease that wreaks havoc on our simple systems. Am I dying?

Two hospital visits, x-rays, ct scans and what is determined is that the tiny blood vessels in my lungs rupturing and causing the blood to sit comfortably in the lung, well, not so comfy for the lungs housed in my body. I am left frail, loss of breath and terrified to close my eyes due to the inability to breathe once the lights go down and my head reclines back. That is where we meet again.

Prednisone.........you terrify the life out of me but charm me in a way that nothing else on this planet could possible do. You allow me to feel burst of energy with clear lungs and help me focus on the brightness outside and actually being able to participate in the simple everyday tasks of life. You temporarily cure my sickness even if it is for just a short period of time. I am yours and you are mine. If that is not a sheep pulling the wool over someones eyes I do not know what is, Along with your wonderful helpfulness the  side effects do eventually outweigh the productiveness you allow me to have. 

You swoon me and court me and lead me to believe everything is wonderful and heavenly but over night things are different. Night sweats begin and you are forced to sleep with clothes on and off all through the night. The appetite is something that can never be satisfied and all the water I need to filter through my system, well, it just sits there and builds up and the ever recognizable moon face begins. Lets not forget that while you are starving every moment of the day you also feel as if you are going to be sick around every bump in the road. The affects it has on who I am emotionally is devastating for me. I feel at a loss for words and look into the mirror and know that those aggravated driven thoughts and feelings are related to the chemical dependency of the steroids. Yes, it too shall pass once the dose is complete but until then I live in a Yin and Yang world that even leaves me wondering who I am.

Passing of the Storm

As the clouds wrap their arms around the sun they tighten their grip. The radiant shine from the sun will no longer be able to escape their heavy grasp. Soon the clouds shed their tears and cover the ground below. The cool drops of rain leave their mark as they nourish what lies beneath them on a scorched and broken desert. The clouds can only hold on so tight, for so long before the sun fights through and slowly emerges shining for all the world to see. As the sun warms the ground below steam is seen escaping from every crack seen by the naked eye as if the earth is silently exhaling. The sun pushes the clouds to the side and as they travel to their next destination a little trail of rain follows behind reminding us of what came before. What you see is the unmistakable beauty of a rainbow that only results when the warm rays of the sun are kissed by the cool drops of rain. It reminds each and every one of us that there truly is a calm and beauty after each and every storm.

Every heart that beats will feel the pain and darkness of a passing storm. Life will stop for a moment and our hearts will break. You will close your eyes and inhale as the tears pour down and wet the sun drenched cheeks of yesterday. But just as the sun needs the clouds to let go we also must let go. We must allow ourselves to fall into the unknown abyss of the dark storm passing. Hold on tight as the wind whips our minds and scatters our feelings like the leaves being shed in the fall. Feel the cold trickle and realize the storm is here but that it too shall pass. You must cry and feel coldness to feel the tenderness of the sun rays hitting you once more as the storm passes and your heart is renewed with a sense of healing and wonder. The darkness and tears will only allow you to hurt for a moment in time. It is in the shine afterwards that radiates from your heart that will allow you to grow.

Do not run from the storm. It is there to nourish our minds, hearts and bodies. The pain allows us to feel happiness and bask in the wonder of joy. Fear will move on to its next destination and love will plant its seed that has been left to grow in the wake of the passing storm. Hope is never lost and love can always be found.

Not today......

The ping pong of machines echo in my ears. I dare not open my eyes. If I flutter for even a moment I will see that even if I wanted to I could not raise my head in question. I am bolted down by a mask that I swear I could reach out and touch with the tip of my tongue. I try to focus on moments filled with joy and laughter so that I can not feel the gentle tug of fear trying to overwhelm my soul. I search amidst the sadness and pain and joys and triumphs for hope. I long for life to pick up in a normal pace and steadily direct me through the next major turn ahead. I want my heart to lead me in the direction my head knows is best for me and my simple life filled with complexity.

Outside of this sterile room where I am locked into a tunnel the world carries on. I find myself wanting to break down in this most vulnerable moment. How is it that the horns honk and the drivers behind those wheels don't realize I am here? I am in here so that spots that have been embedded on my brain can be monitored for specific change in size, amount and complexity. My heart has now been examined for failure and disease. Test after test. We test the reaction of muscle tissue and blood flow. Is the numbness in the hands and feet a result of Lupus attacks or is there something more sinister lying amongst the nerve endings through out my body and that finger through my brain? How is it that I am here, in this moment while others lives move along so quickly to the beat of their normal heart and adventurous minds? 

As someone who is looked up to as an individual with unwavering strength and heart I have to say it out loud........I am afraid. The answers I long for are coming no matter how much I wish them away. I will never be able to close my eyes so tightly and drift in and out of memories that will remove me from the every day reality of my disease infested body. I am grateful everyday I am breathing and that I am able to smile but it does not take away the natural fear we all have the ability to carry. I may not show it to you.......or you.......or yes, even you. However, it is an ever present thought in the depths of my soul and I am saying it aloud for all of you to hear and all of you to remember that I too have the ability and ever present fear of what is going to happen next.

When I checked in to my scans the fun filled spunky technician lead me to my locker and changing rooms. She glanced at my testing pattern over the years and said that she was so sorry that she could look at me without hesitation and tell me.......honey, you know the drill. Once seated in front of her a look of sorrow spread over her face and it was as if the desk became a shield to protect herself from feeling the pain that was recognized in her wavering sentence........we are monitoring for MS.........again with the honey, I am so sorry. It amazed me how a moment ago we were joking about being a pro at these silly tests until she saw the reasoning behind them. The tone changed in the room immediately and there was the look I can never prepare myself for or even warn those of you starting this process.......the simple look of pitty from a complete stranger. I was never seated with the rest of the waiting patients and as she removed my IV after the testing was complete she looked at me with that "look" again and told me as she patted my leg sympathetically that I should take the rest of the day for myself. Rest, watch movies and read silly books. She had no idea that later that day would be the ultrasound of my heart. Another life altering test as the final encore of my day.

As I sit here now emotionally and mentally preparing myself for the next round of testing with electric pulses I start building up my heart and soul a little more everyday. I start by reminding myself that there is reason behind all unanswered questions concerning the simple but powerful word.........why. I prepare myself for the upcoming weeks of appointments after the testing is complete to deliver the news that could result in high fives all around and see you in another year to the simplicity of words delivered to me that will drastically change the rest of my life. 

I am proud to stand up right now in this exact moment and yell out to the world through my words that I am afraid. I feel alone in my locked up thoughts and feelings. Sometimes the strong exterior you see walking towards you hides the shaken heart and soul of someone who is exhausted from fighting so hard for not only her life but for happiness and security. I will smile for you but remember, for every smile there are tears shed in silence  that you will never see. Those of you who have ever asked yourself how you can help me, the answer is simple.........just be there in the silence that can be cut through only with the comforting words of love, acceptance and laughter.

Summer Anthem

Sometimes songs come along at just the right moment in your life. They make you cry, laugh or just turn it up so loud that you have to scream to the lyrics if you want to even begin to sing along!!!!!!! For me these moments in life always tend to fall at the end of another season of summer. The wind has a different feel to it and you know the end of the year is approaching fast. You are left pondering the last nine months and what you would change and will resolve to change in the upcoming year. I like to think of this song as my summer anthem. A song that will slowly disappear as the days grow shorter, nights longer and the breeze has the familiar feel of cooler days to come. 

The summer winds brought so much change to my life this year. As an old relationship slipped away and I closed that door there was a new knock. A knock that begged for me to open and see just what was on the other side. As the cautious side of me wanted to crack the door ever so slightly to see what could be making all that racket, another side of me came forward. A side that demanded change and more importantly demanded chance. 

I threw the door open jumping up and down clapping as new adventures and people ran through! One common characteristic were the smiles strewn on everyone's face who I came in contact with. From a little one who lights up every morning when I come through the door to the little two year old I come home to every night. I am blessed to have had that door swung open by love and laughter when the tears needed to be caught. My new chosen family has been defined and as some left, others stayed  and new faces emerged in the crowd that have lit up every moment of my life since the summer winds blew into town. The groups I once belonged to or looked at from a distance in envy no longer matter or even cross my mind. I am comfortable in my summer flip flops watching from a distance through my summer sun glasses.

Now as the wind changes ever so gently and the hot summer nights are a bit cooler I feel the need to play my summer anthem once more. Flip flops on and sun glasses down I dance, bob and weave through the house screaming the words just so I can say I am singing along. Goodbye summer of firsts and hello to the ending of a year of lasts.

It is time...........

The day has finally arrived. Two and a half years in the making one little letter has changed my life for the foreseeable future. We had decided together that fighting for my rights as someone who battles a disability everyday was worth the sacrifice the two of us would have to make. That first step was not decided by just myself but by the collective thoughts and hearts that the two of us shared in those dark silent moments where every thought hit the ground and shattered the silence sitting there between us. A decision was made based on what was best for us and more importantly, what was best for me. 

The selfishness we both found ourselves drawn to finally had to take a back seat for the time being. The big dreams we had for our lives would have to pause for a brief moment in time. That moment was brief when you compared it to the time we had left. What was once considered brief was too much for you and I to withstand together. The time and care I demanded of you was no longer yours to give to me. Instead of fighting with a united front the battle lines were drawn and I found myself on the outside looking in. The battle would continue on but with one less fighter fighting for my life. 

I will go in front of a judge in two months to plea my case. How has my disease affected my life? The question truly should be how has this disease not affected my life. From the loss of employment, independence and a home that was all mine that once was over flowing with love. How do you take thirteen years of change, challenges, heartbreak and situations where you were left alone and sum it up in a matter of moments. The pictures of the brief moments of pain and loss now must be shared with a stranger by a stranger that no longer is a piece of my life.

I will be surrounded by unconditional love from my best friend to the new amazing rock in my life that never lets me wobble alone. However, I will look upon your face and pray worth all of my heart and soul that you will do this one last unselfish thing for me before our lives truly part forever. I am afraid to see you, afraid of what you will say and even more afraid of what you will not say. I feel a sense of weakness calling on you when all I want to do is move on and really move past the healing process and into the arms of the man who will undoubtedly love me just as I am at this exact moment in time. 

Until then I must ask you for the last time to go into battle not ahead of me, not behind me but right next to me one step at a time. This too shall pass and the light at the end of the tunnel is calling my name. I know once I step into the light that is shining far in the distance it is warm and welcoming not because of the radiating sun but because of the hearts that will be waiting for me at the end and on the other side of my new beginning to a new life for myself and my loved ones. 

I will leave you in the tunnel and will finally close the door that must stay open until that exact moment. Once it arrives, I will not look back. I will not waste one more moment or tear on what might have been but instead embrace the ones in front of me. I will see their hands gently reach for me and as we intertwine our fingers I will finally know I have found my family and the building blocks I have searched for all of these years were always here in my heart but forgotten in the fear and sadness of the life I have been muddling through. 

No more I say. On this day I take my life back. I find my true independence with the love of friends and family and the one special one that exists in a fairy tale that has become the life I now lead......a true reality. I am someones daughter, aunt, sister, niece, friend and true love and those are the relationships that had time stolen from them and now I will water them daily and continue to watch them grow as my body emotionally and physically heals from the damage done over the last few years. 

With one more hello the final goodbye will be said and life will officially start over and a new book will start for my brand new life and whatever may come my way. One thing is certain.......I am more than ready for that one special step into my new life. Until that moment comes I will settle for the day dreams that are slowly becoming my very own reality, Stories once only told in the inspirational stories of others. Now those inspirational stories will belong to me and I will carry them around not as a badge of defeat but as a badge only I can earn honorably. .

First Day

Tomorrow you will wake up. For a moment you will be in the groggy stage of the morning as the sun crosses your face. In your heart you feel it.......a change is about to sweep in and change everything about your life. It is a change we all have already faced but now you will see it through your mama heart. You will get her up and please stop and watch carefully because this moment will only come around once in her life. The clothes will be important even for a five year old and of course you will want to make sure she is cool if it warms up and is warm if it cools down. Tomorrow school will start and her future will truly begin.

There will be moments of chaos as you check off your mental list everything she will need in order to get through the day. You will check, double check and triple check. You will convince yourself you are missing something. You will watch her eat her special breakfast and put on that backpack that looks way to big compared to her tiny stature. Hugs and kisses will be met with hugs promising to never let go. You will slowly walk her to the end of the driveway and wait patiently for the bus. There may be moments where you want to scoop her in your arms and carry her back inside just so you do not have to share her with the world. That baby of yours is no longer a baby and her true independence will shine through those beautiful blue eyes. They will pierce your heart as she finds her way to an empty seat and waves one last time to her mama. 

There is no need to worry. She has a heart of gold, a spirit that can not be contained and jabber jaws like her Aunt Danica. She is a fiery, independent red head who will take on this world with a fury and dance through every special moment. All of that comes from you. Take pride in raising an intelligent, kind and beautiful little person. Those arms she slipped out of, she knows will still be there when she bounces off of the bus and back into her mama's arms........the place she calls home.

Night

Silence is heard throughout the house as I sneak downstairs taking every step lightly as not to wake anyone sleeping soundly behind the closed doors. I stir in an uncomfortable position and I just pray with all my heart that movement will actually result in relief. I am often left pondering why the nights are so tough in comparison to the days. Is it because I am forced to acknowledge the pain that has settled in from a long day and numerous nights of interrupted sleep? The pain that is easy to forget during the day when the light guides me through the daily obstacles is realized in the silence, stillness and darkness of the surrounding night.

I long for that soft blue hue to peak through my window announcing the day has begun. I will find myself in the daily activities that have become a comforting routine. The voices that alert me that the house is once again filled with laughter and love remind me that I am not alone in this world. I will find the comfort in the sun and the promise of another day in this world. 

Until then I must patiently wait. Minute by minute and hour by hour pass as I struggle to stay in my own skin. My Lupus is haunting me once again through the shadows in the dark corners of my mind. I beg for mercy and for an ounce of sleep until I can no longer muster up the strength to embrace one more thought. Then, in pure exhaustion, I will drift off for minutes, maybe even hours if I am lucky to a place where I no longer hurt and in those moments no longer have Lupus. It will be a short but sweet respite of what has mirrored my life for so long. I will hang on to those moments throughout the day until I lay my head softly down once more in hopes of finding that magical place of comfort and peace..........where pain no longer exists.

Bucket List

As we prepare to bid farewell to yet another summer we remember the moments under the sun and the warmth of the rays felt on our cheeks as we smile up to the heavens one last time. Days grow shorter and we slowly brace for that first leaf to fall to announce the coming of the cool nights and brisk days. The smell of Fall will soon swirl around us as time moves along. As we say goodbye to Summer and hello to Fall we are yet another season closer to the end of a year and welcoming the hopes of a new one.

Lately I find myself thinking of the past and comparing this time last year to the moment I am in today. It is amazing the night and day difference that can happen in just one year........a blink of an eye in life's great journey. As we celebrated in the backyard with friends I never imagined that my home would no longer be my home in exactly a year. The one who had been a part of my life for better and for worse silently slipped away over the coming months. Family that I had grown to love as my own would be complete strangers and friends would be forced to move in and out of my life. 

Pain that encompassed my heart left me speechless and altered my world. I slowly found an inner voice that had been there all along but had be silenced over the last few years. Hope rose with a new dawn and the darkness started to fade away. Where I once begged on my hands and knees for time to stop so I could catch up, I found myself running faster than it could keep up. Heartache gave way to an acceptance of myself and allowed the acceptance and love of someone else. I have fallen back in love with myself and with a heart like my own. Laughter again fills my days and longing for someone has filled my nights. I am left filled with the endless possibilities of tomorrow all because of what was left yesterday. I can truly see my future and have been able to forgive the past.

With this renewed sense of myself I am left questioning my wants and needs at this time in my life. What I had tried so long to forget has come full circle in my heart and I know where my path in life is truly meant to lead me. New beginnings result in new dreams and goals and tonight I sit here and I have decided to create a new Bucket List for my new life. Lets throw caution to the wind and take a trip into the future one step at a time............

Celebrate Lulu's 6th birthday and be there when she blows out her candles.

Celebrate Mia's birthday and be there when she blows out the candles.

Put my negotiating hat on and meet with the State of Arizona to determine a settlement for the final time.

Go into my disability hearing confident and accept the outcome regardless of what it may be.

Ride my bike five days out of the week until the end of the year.

Enter my first bike race.

Marry the man of my dreams.

Start a family with my best friend and love.

Continue to nourish my friendships and watch them grow.

Welcome new friends into my life.

Continue to emotionally grow into my physical body.

Raise awareness for Lupus and other chronic diseases.

Accept the days I am not well and gracefully handle them snug as a bug in bed.

Take my medicine no matter how yucky it is.

Leave my heart open to love.

Forgive others.

Camp under the bright Winter sky.

Cut our Christmas tree down.

Take more time for my parents and siblings.

Be a more honest me.

Love myself just as I am today and everyday.

Smile until my cheeks hurt every day.

Continue to see the world in a positive light.

Allow acceptance to flow from your heart and soul.

Stop to really take in the moment at least once a day.

Travel to Italy.

Raft the Colorado River through the Grand Canyon.

Buy my first home.

Visit Albuquerque during the holidays for their small town parade.

Go to my first ASU versus UofA game.

Camp with Ruff and Taggart yet again.

Make it known to my two best friends who have taken me in that there is nothing in the world that could ever even begin to express my true thankfulness for their unconditional love and support but I will remind them for the rest of our lives.

So on.....and so on......and so on....wherever the wind shall blow me......I am free to fly.........

I wish I could tell myself.......

Dear Danica,

Today you turned sixteen and there is so much I want to tell you about the life you have ahead and what you can expect. These are some of the freest and most impressionable times you will ever experience. Take a moment right now and close your eyes. Click.......start there with your first image locked into your heart and lets step forward.

You are about to feel a loss that will forever change who you are and shake the foundation you thought was so safe. In a matter of days you will no longer feel invincible as you do at this one moment in time. Death will touch you on the nose ever so gently and bring you to your knees. She will leave the world early in the morning and you will wish you had done so many things different. You will hug her goodbye and you will never hear her voice, dance in her room or sneak clothes into the car just so you can spend the night. You will want to stay in for the summer, afraid to get into a car but go, she would want you to live your life. Laugh and cry as you go through her room and picture that beautiful smile framed with her brown curly hair. You will no longer want to just please your parents but her own. You are a daughter to them. They will never leave your life and will remain constant. That is one thing you can count on. You will loose her but you will not loose them. Remember her in smiles because that is how she will remember you.

Hang on tight to your friends, yes, those four that never leave your side and are up for anything at anytime. The five of you are so different but those differences help to sand the fine edges of your soul and fill your heart with what was once lacking. Sneak out on the warm nights of summer from the basement of Joy's house and run through the yard and down the dirt road. Sit and talk for hours as you all swear you hear someone coming. It is worth the chance of getting caught because those moments will carry you through some lonely times later in life. Many will tell you that once you graduate your friends disappear but within those friendships you find true soul mates. Time will pass and you will watch them grow. Be there for them to talk to and they will never leave your side even if you live thousands of miles away. Distance will part you but time stands still for all of you and life is beautiful because they taught you your first lessons in love. One tip.........REMEMBER THEIR BIRTHDAYS!!!!!

You are one busy bee! Between drill team, cheer leading and just running wild through corn fields you may forget to appreciate those moments. As you twirl on the field, shimmy those pompoms feel the moments under those Friday night lights. Take as much time as you need to understand that this moment will never come around again. Your body will age faster than you anticipate and the movements that come so easy now will be a struggle sooner than you think. You are free from the changes that are bound to come and nothing we do today will change that path. Enjoy the days and nights and smell the honeysuckle after a storm. Shiver in the first crisp breeze of fall and make those snow angels until your hearts content. You will have an amazing night on a snowmobile. Open your eyes and do not fear the bumps!

The little town you are so anxious to leave, well, you will leave. Do not get to excited yet because you will then spend the rest of your life trying to find that place called home in your heart. Take the small town values to the big city lights and shine just as you are. Do not be ashamed of where you are from or the family that waits for you to return. If someone does not accept them or the Midwest girl that strangers are drawn to do not think twice because they are not worth your time or your heart. 

Smile everyday! You will be voted best smile in a few years so let the entire world see it as you dance through life. Oh, and you will dance! People will remember you waltzing into their lives and twirling out of them like the sweet breeze of spring. Be proud of that aspect of your personality because it will allow you to see the world through extraordinary eyes. The future pain will bring clarity to the world around you and where one sees sadness you will see hope. Anger does not haunt you and forgiveness is given even before it is asked for. Others will stand behind you trying to see the world from your point of view and they will be afraid when they don't. You will challenge many but only a few will stay. That is ok because in those few you will find your forever family.

The way you see the world will draw others in and leave them trying to put their finger on something that they just can not pin down. Never let anyone pin you down. Love with all of your heart every chance you get. Kiss your first love as much as you can because it will not last and you will grow up and set out on your own. While finding yourself in the world you may feel lost, abandoned and forgotten but you are always on someone's mind. Your heart will break many times over and I wish I had more words of encouragement but it will just be something you will have to cry through and pick yourself back up because you are a beautiful, strong woman. During these moments you will feel as if you will never be able to put yourself back together but you will. With each crack in your heart a lesson will be taught and one after the other you will realize who is right for you and who is there to hurt you. Be strong and even though it hurts leave your heart open and do not wrap it up because the sting of today will result in the joy of tomorrow.

I have to break it to you ever so gently........mom is always right and everything she tells you, you will understand in the future. I know you will not believe me at this exact moment but go a little easy on her because raising two girls in high school is not easy and we give her a run for her money. Stay in a few extra nights and visit daddy and Suzette more. Dave will teach you how to ice fish and in that simple mundane moment on a dark winter day a light will be lit in your heart and the outdoors will become where you will want to be later in life. Love your sisters and brothers like you will never see them again. There will be times years will go by and the faces that resemble your own are the ones you see the least and miss the most so please memorize everything about them so your heart can hold on to them even when you are far out in the middle of the desert.

You are smarter than you think and stronger than you have ever imagined. Milestones may take longer to reach but when you reach them celebrate like no one is watching. At that moment stop right there and close your eyes. Click........another beautiful image is added to your ever flowing heart of images taken along the path of your amazingly, beautiful and strong life you have created for you and only you.

Love always,

The Older You

One step forward.......

Life can be cruel at times. Life tends to lead you on by allowing you to feel safe and secure and just when you take a deep breath in and slowly release convincing yourself that, hey, you have this, it decides to pull a fast one on you. The false sense of security is ripped out of your hands as you reluctantly let go. The bearings you had on what you felt was headway made was actually an illusion and life now shows you that you are still left grasping to the ledge you are barely hanging on to. For a moment you have taken two steps forward and twenty steps back. 

Over the last year I have struggled to hold onto that ledge that I built for myself. I slip and cling as tight as I can and I wait for the numbness to overtake me so that I feel as if I have a new grasp on the world. The numbness allows me to forget that I am barley hanging on and for a period of time I can feel the sweet acceptance of a new chapter in my life. Out of the blue something unexpectedly always comes along and throws me back into my reality and the grip loosens and the panic feeling overwhelms me as I again struggle to find the numbness that will allow me to carry on. 

I have recently experienced one of those moments where life laughs cruelly in my face knowing that at any moment I may choose to let go. I have been very sick over the last few months. I have been in and out of the doctors office, emergency room and urgent cares. Each time I shuffle through the sliding doors and I put so much trust in strangers because I am at a point of desperation. I want to feel better........I want to feel better all the time. I will do anything, try anything and will allow them to poke and prod as much as they need to in order to finally deliver the golden ticket of health and security. I exit the doors I walked through moments ago without a golden ticket but with five prescriptions that we hope may help and I am still left searching for my Willy Wonka in the medical field. 

Tonight I seclude myself in a bedroom and stack up pillows behind my back so that I can work on reducing the fluid that has now built up in my lungs. I try not to cough for the fear of the pain that follows the rough convulsions caused by my lungs seizing when I breathe in to deep. I shake to the drum of Albuterol and sing to the tune of strong antibiotics. I pray to every God known to man and ask for an ounce of relief from the infection that has now taken over and seems to be able to beat the odds of death by medicine. I miss the ability to swallow firm foods and I am exhausted from the constant run to the bathroom resulting from an all liquid diet. A fight is raging inside and I must be the strong leader no matter the sacrifices or the cost.

I am clinging to the ledge once more. My legs are dangling as I try to crawl up the side of the wall while my feet slip at every attempt. I can feel the pain in my fingertips as they cry out for mercy and for me to just let go. I reminder myself that this to shall pass and the pain will again turn to numbness. I collect myself and stop fighting the pull of gravity and settle in for another long struggle but as I settle in I look up and see the beauty of the blue in the sky and feel the sun warm my face and in that moment I am reminded why I hold on so tight and never let go.......even in pain there is always beauty to be found.

Passing

Strength is measured in ones ability to withstand. Normally when we think of an individual as being strong when they can literally carry so much weight that ones is left gasping and inwardly yelling at them to please drop it before they hurt themselves. In those moments we are in utter awe of the strength this one individual can exude physically. Knowing we could never carry that, we walk away stunned by the sight of what we just witnessed. What about the silent strength that we each encounter everyday without even knowing what we are looking at? It is in this silent strength you will find the burdens of ones world. Silently carried throughout ones day. They slip through the crowd and you would not even know of their internal struggles. However, in one chance encounter you accidentally lock eyes and you are transported into their world in that moment it takes to blink an eye. 

You are carried through the beating of their heart and pushed through the worries only they know. You feel the worry of tomorrows busy day before today has even begun. The weight of their world is now on your shoulders. You loose your breath when you feel the heartache of loss. Taken back by the idea of loving unconditionally and letting go so that peace can be found, you stumble hitting the walls of their life. At once you are crippled by a pain experienced all day every day and you breathlessly ask why. Longing creeps into your bones as you realize the inability to move fluidly through one simple motion. 

You feel the negativity that tries to creep into the mind and is pushed back and shaken from the forethought of this individuals reality. You are transported from the dark end of the psyche to the brightness of longing, love and possibility. Smiles and the simple words of a children's book resonates over and over through the heart.....I think I can, I think I can, I think I can and they do. Through the pain they see the beauty of what is still possible. You find a drive like no other and internal acceptance only known by those turned away time after time. There is a fevered push to move forward and leave the negativity of yesterday behind. It as if the clouds have parted for the very first time in existence and the sun is felt. This radiant glow is felt through every inch of exposed skin. The tiny hairs raise and bow to the warmth of hope. 

Somehow in that one blink of an eye your life has changed. The simple contact of a locked gaze has transformed how you see your world and those around you. Something has resonated inside of you and nothing will be the same. A simple glance, that chance to understand and the one moment that allowed you to see life through someone else's life will forever alter you. How you lived without this insight for so long you will never understand. 

With the blink of an eye it is gone and you walk past her in the crowd. You glance back knowing life will never be the same. Search you may but you will never be moved in one single moment as you were in that random passing on the street.

Disposed Of

At the onset of my disease I was in my carefree early twenties. I had been legally "blessed" by the alcohol Gods and was not turned away at any door that vibrated with loud music and an atmosphere of fun. I lived on my own, had a wonderful job and like anyone in their early twenties, felt invincible to the world around me. Nothing bad could or would touch me! I was embarking on the best times of my life. The world was open to me and anything was possible. Every moment felt as if I was riding with my windows down and I could feel the breeze slip through my fingers as I forced them against the oncoming air. Life was a whimsical tail told by others as the most imaginative and enjoyable time of their lives. Unknown to me everything was about to change and life would never be the same. 

I was twenty two and the doctors tried to explain to me that it was sleeping so soundly in my DNA and the sudden shock of moving from Ohio, a cooler climate, to Arizona.....let's be honest , Hell on Earth in the heat department, had shaken my internal DNA and suddenly a disease had been released into my body. This disease would now take control over everything. It would decide on what it felt was needed and not needed. It would fight anything in its sights even if it was a vital part to the functioning of my body itself. Blood would forever be tainted with stained and specked spots floating around and reproducing at a rapid rate. Karma was asking to be paid in full. No amount of good in the past would change the fate of my future. 

Time would pass by and refused to slow when I needed it to the most. My body had betrayed me and would never reconcile with me no matter how many days and nights I spent pleading for the pain to stop and bargaining with a disease that had no face that if by some miracle I could be healthy I would never take anything in this world for granted. I would emanate love and kindness and grant forgiveness every time I looked upon regret. I would be true to myself and understand with great capacity within the world I lived in. However, the Devil continued to knock at my door and when finally answered it Lupus was staring back into my soul every time I looked into the mirror.

The daily fight to survive was redefined for me. I would fight for my life for the rest of my life and in the end may even have to pay with my life. Processing that simple idea that most will never face in their life became a goal, almost a challenge. I decided all of the bargaining I had done with my body truly showed me who I wanted to be and the mark I would leave. I would live with my disease with grace and dignity and never impose my pain on others. I made it my mission that no one would suffer due to the fact that I was sick and everyone in my life would see normalcy when they looked at me and nothing would radiate from my soul that shouted, "Look at me!!!!!! I am sick!" I would show love and kindness and would forgive where regret remained. I would take the simple concept of an organization I hold dear to my heart and leave the world a better place than I found it. That was the person I would come to know as myself.

Today I am proud that when I look in the mirror and see Lupus staring right back at me that all it is is a vision of who I am. I have been disposed of like a piece of unwanted property many times because of the draining affect my disease carries with it. The resentment towards me because of something I can not control has melted into my life. A changing of the guard has occurred and like those from the past I have been locked out by a gate that I no longer posses a key for. Friends have rotated and all of their lives have carried on seamlessly. The sick person has left the building and a new and healthy one has walked in the back door. I have not disappeared and while time moves on I am still fighting for my life. I will never live a life free of Lupus. While everyone embraces change one thing will always be consistent, no matter how many times people leave my life and "dispose" of me because of my life I will always be left fighting for my life. One day you will hear a mention of Lupus and you will think to yourself or maybe even boldly say that you used to know someone with Lupus but I will be the real fighter because for the rest of my life I am Lupus.