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.