Marathon not a sprint........

In seventh grade I started a new school and I had to find a way to fit in with so many who had known each other all their lives. I asked my mom one day how can I meet people in a new place like this?  What is the one piece of advice grown ups tend to give in this particular situation........try out for something.......join something!!!! At that moment in time I had not yet developed the notion that parents, especially mine, are always wrong. This may have been one of the last moments in my teenage years that I actually listened to my mom. With out skipping a beat I tried out for cheerleading and all those years of dance paid off. I would find myself cheering for the next six years.Being a cheerleader was great but I knew I could really make a difference in this new school by trying out for something else and I came to the conclusion that I had to do more!

As the leaves changed to the beautiful rich colors of fall I decided that I could cheer for basketball and I could play basketball. Those of you who have known me since seventh grade are probably scratching their heads wondering if they missed something. Did I really try out for basketball many many moons ago???? Well, no need to run for our old yearbooks. The answer is yes AND the answer is no. I approached my mom with this magnificent idea that I had. I can close my eyes and see her now hugging me profusely wondering how in the world she raised such a brilliant daughter!! However, in reality she looked at me and tried not to laugh, already knowing how this little endeavor would turn out. 

On the first day of open clinics I put on my gym clothes, my new running shoes and headed to the gym. I listened intently as the coach explained how the open clinics would work and how the selection process would go. I thought to myself......you have this!!!!! We were all told to stand up and head to the line closest to the wall. The coach began to explain the running exercises we would start practice with and end practice with, suicides. Wait!!!!! No one, I mean no one told me I was going to have to run!!!!! Yeah, I figured I would have to run up and down the court with the ball, but just to practice???? Well, I was already there so I had to try. I stood there and finally heard the whistle!!!! I put my mind to it and pictured myself running as fast as the cheetah when in reality I am sure I looked more like a turtle. I made it to the first line, turned around and came back. Without stopping I made it to the second line, turned around and came back.......over and over and over. Finally, I made it to the end of the court and I had turned around one last time and saw the starting line and focused clearly on the end in sight. As I approached the rest of the girls something took over me and before I knew it I had ran right past everyone, out the gym door to never be seen at another basketball practice again!! Remember how I mentioned my mom just knew how this would end???? Well, there she sat in the parking lot as if she knew I would not make it past the first few minutes. I silently got into the car and my rendezvous with basketball was never mentioned again.

Some of the most amazing people entered my life over those seven years and I am proud to report that almost all of them are still an important part of my life. We do not get to see each other often enough but we are here for each other when it matters the most. I was taught a valuable lesson over those years. Life is not a sprint but a marathon. It takes hard work and perseverance to create a life for yourself and it takes even more work to create a life with others but it is worth every moment. 

We are embarking on another adventure in life, one of the most profound for my husband and I. We are trying to have a baby and it is not going to be the smoothest of rides but one that will be worth it in the end!!!! Look at me, it would be odd if there wasn't a little crazy in this process. We have to just keep ourselves in the right frame of mind. We must lean on our friends and family for support and encouraging words. Our support system will be our fan section and I know they will be cheering for us through this new journey. Once this baby decides to make its presence known it will be welcomed in a world of love. So, I must stay firmly planted on the ground and not get discouraged when things do not turn out the way we had hoped month after month. This is life!!!! The meat and potatoes part!!!! You dive in and you either like gravy and swim or let the mashed potatoes act as quick sand. No matter what we must remember life is not a sprint but a marathon with an amazing banner to run through at the end of the race......we will even add in the occasional cow bell because who doesn't need more cow bell!!!!!

Fight Song

Once in a great while a song will come to me and I wrap my entire self in it. I can see the end and the beginning. A song that encompasses my entire heart and places me at exactly where I am in life. I grew up with music in my life. As a small child I fell asleep to the sounds of my dad's band playing in the background. I could hear the bass and I allowed it to lull me to sleep. Music has continued to set the soundtrack of my life. I have a song set to the memory of my first kiss, the music I had to dance to as a cheerleader and of course, the song I recently walked down the isle to meat my husband. Happy moments and devastating moments. I let the music guide me through celebrations and through times of mourning. 

Over the last few years life has sent me reeling in so many different directions. Doors have closed on some of my darkest years. I was forced to open the window of life and crawl through just to limp to the other side. I refused defeat and believed in who I was and still am. I trained my heart that once lived in a constant state of breaking to believe that I am loved and can be loved forever. I went through hospital visits filled with anger and guilt to holding a constant hand. The positive lining that had circled the clouds finally shown completely through to reveal a beautiful rainbow. 

Tonight I share the song that guided me before I even heard it. I share it with my Lupus family. We start the fight every morning before our tootsie toes kiss the ground beneath our bed. We pick battles internally that most will never find themselves up against. Individually we are scared but together we are set to make a difference in the course of the disease we fight. We are history in the making.

To those of us who must struggle to create this magical miracle in our lives, I carry you with me everyday. As tears fall in disappointment there are tears of joy shared with many as their journey has come to an end. This instills that hope that encourages us to try one more time month after month. Remember, everything worth having are things we must work for.

Sit back and close your eyes and find your inner fight song!

Onward We Go

I am thrown into the ring once more. Life is on one side while I am set up to dodge everything it decides to throw my way. Auto-immune issues are coming from the right, fatigue throws a punch from behind and throws me to the ground! Finally, coming from the left, the hardest punch of all is felt as it settles in the pit of my stomach. Another seventy days of trying come to an end. I brace for the inevitable sense of frustration, disappointment and the overwhelming sense of sadness. June comes to an end and we are still just a party of two. 

I may not have a little bambino on the way yet but I have learned a lot about myself over the last seventy days, well, I would say the last six months. My basal temperature has shown me that I may not always be on time but I still arrive at the final destination. Poor Greg has also learned that I become a ball of tears that are not controlled by anything rational! With this new tidbit of information he still puts up with me and wants our family to begin soon. He takes me for the occasional milkshake and spends hours a week helping me work things out through physical and mental exercise.

The most important lesson I have learned during this time is to find inner grace and thankfulness through all phases of life. In order to move through this life we must embrace change and not fight against it. Change is a constant in all of our lives. Fighting against it will result in the same outcome but through a much more tumultuous storm, one you may find yourself going through alone. 

As I prepare for the sharp edges of ever changing emotions over the next week and a new sense of purpose for the upcoming months, I would like to take some time to reflect on what is good in my life. So many of us move to fast and do not stand still enough to absorb everyday joy. Right now I am planting my feet heavily in the dry desert dirt and taking a moment to reflect on all that is beautiful and all that is right at this one moment in my life. I hold steady and I am prepared to brace myself for yet another round of never ending growth from continuous change that life always seems to throw my way.

My Lupus

In less than fortyeight hours I will blow out thirtysix candles on my birthday cake. Some see their age ticking up and up and fill with a sense of dread. I watch every year come and go with a sense of accomplishment and joy. I celebrate another beautiful year in this ever changing world. I reflect not on the bad but the positive I have experienced this past year. I found my other half, was married in the West Indies and we are now trying to expand our little Lautzenheiser clan.......all moments to be overjoyed about and allow to eclipse the moments that may have left a sour taste in my mouth. Most important......I am here. I was able to wake up every morning and bask in the sun. I watched as clouds flooded the sky and let go an immense amount of water onto the barren land below. Those memories are all mine and are filed under my moments in time. 

I write about navigating the rough waters of living, loving and coping daily with a chronic autoimmune disease called Lupus. Lupus has been and still is a very difficult disease to detect, diagnose and treat. At this point in time there are no cures and those diagnosed with Lupus will suffer through the disease for the rest of their lives. One of the most difficult things with Lupus is not one disease manifestation is the same from one patient to the other. In all reality we all play a crucial role in the research of a disease that allows each of us to be individuals even when you just want to belong to a large group. The doctors can not predict what my Lupus will do next or what organ will be affected. In a sense it is a hide and seek game I play everyday with my own immune system. 

Today I am taking a timeout. I am taking this timeout to tell you how my Lupus is affecting me right now in this moment. I ask of all of you to remember your loved one with Lupus may see doctors all the time and may even fill their time with support groups but not one single person will mimic their disease path. It is a disease that will leave so many feeling that they fight alone and live in a world of isolation and unwanted internal time to themselves. All we can ask of you, friends and family, is to be patient as we navigate these ever changing waters that at times capsizes the very solid ground we stand on.

1. Today I will take twenty six pills. That is 182 pills a week. At the end of the year that will total 9,940 pills.

2. Out of all of those pills I must swallow daily not one is treating my Lupus. Greg and I are trying to start a family so we are maintaining my comfort during this period of time. Once we have our little one I will have to jump on a large dose of steroids and build the bridge back to treating my disease and not just the symptoms.

3. Starting a family is going to be a journey of heartache and hopefully an end result of pure joy. The chemotherapy I took for years may have caused too much internal damage and my body may not ever be strong enough to have a child.

4. I now struggle with my weight. This is not caused by too much ice cream or eating an entire pizza, it is caused by medications. Medications I must take. My heart medication causes a thirst that can not be quenched so I drink, drink and drink some more. Another medication causes me to retain that water and you can imagine that it is a never ending cycle. So, be kind and do not judge. Walk a day in these water logged shoes and I guarantee you, those dusty boots in the corner will feel like your toes went on vacation.

5. Over the past year Lupus has attached my nervous system and has caused neuropathy in my feet, legs, hands and arms. In the next year I will have to undergoe surgery on both arms to take pressure off of the nerves affected. Neuropathy can not be reversed only treated and is one of the diseases Lupus likes to party with. So, I am going to rock the party with purple casts!!!!!

6. Along with Lupus and neuropathy psoriasis has joined the party! I will undergo biopsies on both ankles in the next month to see if it is reaching the joints it sits on. I have no idea who invited that fella to the party!!!!

7. This past year I had to visit my favorite emergency room multiple times. The majority of those visits can be blamed on these two things called lungs. I have the lungs of a 75 year old at this point in time and find myself needing to use my breathing machine throughout the year.

8. For the first time I have a discrepancy with my EKG. Now we are watching and monitoring my ticker every few months. If you ever want to feel young.......go sit in a cardiologists office!!!!

9. I have to carry an entire dose of a brood spectrum antibiotic and steroids with me at all times.

10. Easting is very hard. I loose my appetite at a drop of a hat and I can no longer tolerate dairy or soy. Thank goodness I have a fondness for almond milk at this time!

11. Every time someone asks me how I am feeling it is easier to just say ok than it is to explain what Lupus has decided to do today. 

12. Underneath the smiles and unshakeable strength lies a little me crying on the inside. Sometimes the pain is so bad that doing the dishes is the largest accomplishment of the day. I normally celebrate with a nap!!!!!

13. No matter how Lupus affects my body and my mind I am still the person I was eighteen years ago, ten years ago a few months ago. A little older on the outside but still silly on the inside.

14. I dance everyday. Sometimes I am able to spin little Mia around the room, other times we boogy on the floor or I close my eyes and dance through my memories. No matter what, I dance everyday.

15. I live in the Valley of The Sun but I have a vitamin D deficiency. No amount of time in the sun will ever fix it. I must take 10,000 IU a day to bring my levels to a normal range. 

16. A simple breeze blowing, covers at night and even just my jammies can cause my skin to hurt and burn on contact.

17. Speaking of jammies......I think I own more jammies than socks!!!!! 

18. I run a low grade fever almost everyday. I sizzle!!!!!

19. I have lost friends because of Lupus. I make plans and have to cancel more than I am able to follow through. It is not because I am a bad person or I don't want to see and spend time with my friends. Sometimes the pain is so bad I just want to be in my bed surrounded by my things. It is where I have the most comfort so I can be in the moment good or bad,

20. My support system is more important than any medication I take now or will take in the future. They hold me up and wipe my tears when the pain is unbearable and celebrate the joyous moments right next to me.

Through all the dark Lupus allows me to see light in some of the bleakest moments in my life. I see the world through eyes most will never be able to even glance through. It has taught me to hold those who love unconditionally close to your side. They may be few in numbers but they are enormous in heart.

Maybe Baby........

You can prepare yourself for some things in life and other things, well, those moments pull the rug out from underneath you. I prepared myself for this moment in time. I went over it and over it playing it like a broken real of film repeating itself in real time. I knew it was a possibility but I some how convinced myself that this overplaying was just a precaution and not my reality. I would be the exception to the rule and while so many things are a struggle everyday in my life fate would not be so cruel as to allow me to struggle through one more moment in my quest for happiness. I can close my eyes and hear the doctor explaining to me what may be wrong and what could possibly be right. I heard options rattled off but as I dig through my memory I can not recall what they are. All I know is that as I walked through the exit door and back into the lobby I saw women with their newborns and women expecting. I stared at the floor knowing that eye contact with these blessed women could bring me to my knees. You see, I have become yet another statistic and my beautiful husband and I are officially embarking on a detour and are forced to take the road less traveled down the path marked infertility. 

The doctor is not sure if it is the result of the chemotherapy or the result of not trying to get pregnant years ago. I can not dwell on the cause or the timing. Nothing can be changed. Chemotherapy was given and time was squandered and I am exactly where I am supposed to be right now. Looking back is not allowed and I must focus on the journey that lies ahead. I will need all of my strength and positivity that I carry in my soul in order to push forward even when the hurdles seem too much to overcome. I am reminded daily that this battle is not fought or won by one single person but is fought and won by a family and I am not alone. 

I have welcomed each and every one of you into my world over the years. You have been  able to see glimpses of my struggles, accomplishments and overall sense of hope. Some have asked me why I feel sharing my life, good and bad, is so important. I respond with one word......togetherness. I am reminded through every view, every comment left that I am not alone and my support system has no borders and a sense of belonging can be found in my tiny corner of the world. As I struggle with creating life I am reminded of life and how precious it is big or small. 

Giving up is not an option. I am firmly holding on to my faith that good always overcomes in this scary world we live in. I struggle daily with a disease no one can see but one that I yell out into the world. I now find myself struggling with another challenge in my eventful life and in true Danica form I am sharing it with the world one needle prick and one shot at a time. I do not see parenting as a burden but a blessing and I can not wait until the day I can literally count my blessings one little noggin at a time. Until then the world is our support system and I will call upon it frequently because I will have so many questions and not enough answers to ever quench my thirsty soul. 

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!!!