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.