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.