Still Me

Today I was up before the sun. I leapt out of bed and threw on running shoes that sit by the door in their normal spot. I step out into the beautiful morning and breathe in the clean morning air with a hint of a final spring chill. As I fall into my stride I run to the beat of my heart. Bu bump.....bu bump.....bu bump. I hit my stride that will take me into mile seven and will slowly decrease as I walk into my cool down. By the time I reach the door the desert sun is a little higher in the sky and the spring chill has been replaced with the beginning of a smoldering day that will lead us into summer and into those days that force you to run from air conditioned car to the air conditioned buildings. I will just have to set the alarm an hour earlier to beat the sun rising during those longer summer months of the year. I am not concerned because this is the schedule I have followed for many years after transplanting myself to The Valley of The Sun. 

I am thirty five and I am an independent strong successful woman with a beautiful family and an emerging career. I may stay late at the office but I am still able to give to my loved ones when I walk through the door in the evening. Some days I walk in a simple daze from watching a late night movie knowing an extra hour of sleep is needed but I have to pass because this is my favorite part after all. However, I can power through with the day with the best of them. I am strong, bright and beautiful. I have more to give to the world than I will ever need to take. I travel on a yearly basis with my family to places I could not even pronounce as a child. I am grateful for these moments in my life because I know I am expanding my children's knowledge through experience, culture and moments of realization that maybe we are not all that different from others. I learn from the wonder in their eyes.

Tonight I tuck in the little ones and lay next to my husband of so many years. He sees the young women he met all those years ago but has also watched me grow into my own through time and lets not forget patience. We laugh about our days and discuss what new adventure we will all go on this year. As we fall asleep I count my blessings. I have sucess, family and health. I drift off to sleep remembering that the alarm will wake me up a bit earlier tomorrow for my daily run as the sunrises on yet another miraculous day........

The alarm goes off earlier than wanted and as I reach over to stop the inconsiderate noise I am reminded that the early wake is for the doctor who will bend me in a normal fashion to see how much mobility I have at this particular moment in time. I can already hear him now.......the mobility of the left side is lagging compared tot he flexibility of the right. More steroids and increased pain medications and the fight of more chemo will be had. I know all of this based on the difficulty I have just swinging my legs over the bed I woke from fifteen minutes ago. 

Silence fills my home as Greg asks me if I need help dressing today. I decided it is a day of independence and so I make the call that it is national pajama wearing day.......at least in my head it is. I move from point A to point B in slow, steady movements. I use the wall as my catch all and balance using its stability to move easier. I get myself ready for the day and cover up showing skin with my sweater even in the summer heat. The least amount of UV exposure is what my body needs in order to function properly and to put off the next flare as long as possible. I look at the shoes next to the door. They are not running shoes but flip flops that I can easily slide off and on and do not need the dexterity of my fingers that I lost so long ago. I get in the car and I watch the mom's put their kids on the school bus in front of me all ready for their day to begin once the kids are safely off for their big day of learning. I am reminded that I have put off having children and now may have waited too long. I silently close my eyes fighting the tears back telling myself with my calm inner voice.....your time will come, I promise.

What most do not understand is that in my heart and soul I am one who can run with the wind and dance in the sunlight. I can pick my kids up and twirl them through life. I have love to give and can receive unconditional love back because there are no extenuating circumstances attached to me. I use my mind as though it is crisp and clear everyday. I am able to blend in with the rest of society and not stick out like a sore thumb. I have more to give and less I need to receive. I am who I set out to be at twenty and nothing derailed me. I am me uninterrupted by the onset of a debilitating disease that will follow me for the rest of my life.

My innerself is still who I feel I am. My outer shell has had to go through so much over the last few years and you can still see the footprints left behind by medication that alters my outer appearance. The beautiful women you met when she was twenty is still there. She is hidden under prednisone wobbly bits, swollen skin from Lyrica and a face that has not aged by the sun because those sun kissed cheeks we all long for will set off an inner battle that will rage on and cause irreplaceable damage. I long for the women I could have been but embrace the one I have become. 

Lupus has changed my life forever and has forced a directional change more than once. It has lead me down a path lined with dark forests that I do not dare go into for fear of loosing myself to this disease. I stick to the path even with the boulders that fall in front of me. I climb over them slowly and carefully. When faced with a hills it may take me longer to get to the the top and some in my life refuse to walk with me and run ahead leaving me behind but when I do make it to the top a feeling of accomplishment enlarges my heart more than I ever imagined it could and those who walked with me celebrate every hill climb as if I ran a multitude of marathons. There are still moments of pure joy and hope that I am able to squeeze out of every single day. You see, Lupus may take my ability to do some things in my life and may cause me to feel alone at times but I always remind myself that it can never take my ability to hope, dream and love in the wee hours of night all the way through until morning's first light. For that, I am forever grateful.

Marrying Kind

I was never the little girl that dreamt of her wedding or liked to play bride. I loved looking at wedding pictures but the act of getting married, planning a wedding or even being the bride was so far from my mind as a  little girl. Maybe it was because of the years of dance classes and all the fluff that went along with the twirls, taps and jazz hands......yes, I said jazz hands! I think that explains why I hate to wear makeup or spend time on that crazy blond mop that sits on the top of my head. My mama spent hours curling, braiding and pinning that crazy untameable mop. She also spent so may hours of her life doing my makeup for those all important competitions and recitals. I can still remember the glasses of water spilled and the yellow rattail comb that found its way to the side of my head telling me to be still or else I would be dancing with one side of my face "painted". Oh the joys of being a little girl or should I say a mom of a little girl!!! 

As I grew older I grew out of the fluff of tutus and fell in love with no shoes, ponytails and dusty desert roads. I settled into not washing my hair for days and hearing relentless teasing from my sister for it. I can still remember my first boyfriend I had in my twenties and it hitting me like a ton of bricks that I am at the age where I may meet the one who ended up staying forever. Talk about a shock to the system!!!! That one entered and exited my life like others would leading me up to the one who would stay forever. 

In two weeks, two days and forty five minutes, yes, I have created a countdown, I will have to dig deep for my own inner fluff and change from a no shoes, dirty ponytail girl from the country and desert to my inner bride that has been hidden for so many years! Like everything else in my life it will not be traditional but speaks of who Greg and I are as individuals and as a couple. It has been our way or the high way since the beginning and it turned out that our way would lead to the highway for our wedding. It all starts when a plane touches down in the beauty of the caribbean and will end with vows wrote directly to each other and music chosen as the soundtrack to the start of our life. The beginning of the rest of my life, our life. For better, for worse and most importantly in sickness and in health. 

By the way, Lupus, your not invited!!!

Hard Lessons

As a child I would line up all of my stuffed animals and dolls against the walls. I would take the fun school papers Suzette would bring home to us from her class room and place them in front of each pupil I had designated as my own. Hours turned into days and Holly and I would play school for entire weekends. Our students would nap while we slept and would find themselves in trouble if their work was not completed properly. I look back now and realize how much we actually taught ourselves as we completed assignment after assignment for our students. Of course we had the few troublemakers in our class and their assignments would be marked with scribbles and we would have to lecture them on the importance of understanding and trying their best even when their best was out of reach. 

I grew up surrounded by education and my sister and I both thrived in school, well, at least when we wanted to. I lived in a home where C's were unacceptable and were reason enough to limit our activities. As a child it felt as though the world was ending but as an adult I look back fondly and realize the birth of courage and the art of never giving up was in those moments. I carried that feeling with me as I grew up and grew into adulthood. Challenges were thrown in my direction and I either ducked out of their way or allowed them to hit me head on only to push back until they no longer existed. I had no idea that the actions of my parents and their high standards would prove to give me the most strength in a battle I would fight everyday for the rest of my life. 

Once I realized something was wrong and as I struggled through the first few years of tests and medical exams I would put on a brave face for everyone around me. As my loved one left the room as the tube entered my spine so they could throw up I just chuckled to myself thinking what a wimp!!!!! If I can handle this anyone watching should also be able to handle it too!!! Later the same long needles would enter into my scalp for treatments and no one, I mean no one was allowed to flinch in that room with me. Strength and courage was demanded of everyone around me as well as myself. If I had to muster the courage needed forward from below the fear than everyone else also had to be brave in my presence.

There are certain defining moments for each of us who suffer in silence from a disease that no one can see but we feel to the core of our very  being. They are moments that send you off on your path of acceptance or defeat, joy or constant sorrow and grace or pure humiliation. My moment presented itself very early in my testing before my diagnosis. I worked with babies and my co-workers were my friends. One special person in my life was going to school to be a nurse and she knew even before I knew that my life was going to be forever changed as she ran through results with me week after week. Finally the words of my fate were whispered.......Lupus. I walked into my classroom and someone asked her how she should treat me after this......as if I lost my hearing. The answer was so simple and clear. She was to treat me today as she did yesterday and tomorrow will come and Lupus will not leave so everyday she had to remember who I was before Lupus was in the files of my life. That person did not die. She was right in front of them.

I have emotionally grown stronger over the years and have had to learn a lot of heartbreaking lessons about others in my life. They have entered and left but Lupus has always and will always stay. I have cried a river and stared into the space that fills my thoughts. Self reflection is something done everyday and self inventory is necessary in order to still see my chosen path of hope, courage and grace. 

I realized very early that my path to becoming a teacher would no longer be supported by the body that I reside in; however, I am a teacher everyday. I smile at strangers when our eyes meet. I tell my family I love them everyday. I snuggle the little ones in my life until they cry for release. I listen to the doctors very carefully but remind them compassion is just as important as diagnosis. I am not afraid to tell anyone I have Lupus knowing that a deep conversation is the only direction this will take. Most importantly I teach myself the hardest lessons in life. I remind myself that it is important to love oneself through the pain and tears. I will find people who have no compassion or loose it overtime and in order for me to stay on my path they must exit my life just as they entered it. My body does not always work the way I want it to but everyday is an adventure even when I am not able to get out of bed because of that path I chose to go down. When I am sad I think of the standards that I have set for myself and all I have to do to be reminded of my chosen path is to look over the edge of the bed to see it lined with flowers grown with acceptance and love, hope and courage and a dash of silliness and laughter that only those blessed to be a part of my life recognize.