Life's lessons at times taught through the hard way. Through my battle with autoimmune disease I find inner strength in my life through the courage, hope and the natural discovery on what it truly means to be a survivor.
Fall is fast approaching and the summer sun will soon set and give way to the organic beauty of nature. Golds, oranges and reds will warm us from the inside as the outside chill swirls around kissing our cheeks. Trees will shed their leaves in preparation for their winter sleep and grass will brown as it prepares for the winters first fresh blanket of snow. The year will be coming to an end and the time to reflect will be upon us.
As Fall winds its way into the world I am left thinking of this past year and what an amazing year it has been for us so far. Yes, I know that we are months away from letting go of the old and bringing in the new but I am a strong believer in positive thinking and pure reflection on ones life. It clears the soul and alleviates the heart. It allows us to constantly take inventory of our personal happiness in real time.
As I start to reflect I am in bed this weekend resting. Lupus has shown its ugly little head (picture the worst bed head ever) and has landed me in the hot seat once more. It is testing my personal strength but more importantly it is trying to test my belief in myself . As I lay here in bed it would be very easy to fall into the sad, angry and frustrated abyss that lies below the surface. I could ask questions in regards to why do I have to suffer every day and why have I had to make so many sacrifices that most will never even have to consider? Why is becoming pregnant so hard for me and so easy for others? I could lay here and wallow in self pity; however, that is not true Danica fashion for we all know that I am better than that!
Today, as I continue to take inventory of my personal happiness, I close my eyes and revisit the first date Greg and I had. For a moment I find myself back in Ohio running with Lauren and Mia and taking in every ounce of love because these moments are fleeting. I find myself in Colorado hiking down Box Canyon Falls breathing in the mist and truly finding my heaven on earth. Greg and I are sitting next to each other Christmas morning when I started opening box after smaller box until the moment when I became a fiance. Boxes are being unpacked as we move into our first home together and embark on a new adventure. I am standing under the gazebo listening to the music and feeling the ocean breeze whisp a piece of my sun kissed hair across my cheek as I say I do and became a wife. Families are joined, friendships are nurtured and time is filled with nothing but joy from my heart. When life shows me pain and suffering I draw from these happy moments in my life and use them to build a stronger foundation of love. It is in this foundation where I draw the most strength.
Now it is time to embark on another month of sweet anticipation in the hopes of our miracle. I reflect on everything that is good in the world and in my life and use it to muster up enough courage to put a brave face on and believe this month is THE month. Even if this month does not result in the way we hope, I carry with me that with each passing day we are closer to realizing our dream of a family. One that will be built on a foundation of unconditional love, never ending encouragement and pure acceptance.
It is there. Pain that has silently been hiding waiting for its moment to show itself in the most inopportune time. The doctors never mean to pry and they never want to cause their patients pain. However, this time this doctor asked a question that has been echoed through the tunnels of my life, at least the last ten years of it. Why had I waited so long to try to have a baby with Lupus?
I have always been drawn to the little ones. As my husband likes to put it, they are shiny objects that attract the eye of females, especially this one! I wanted to be a teacher when I grew up but when I became sick the doctor told me that it could shorten my life if I expose myself to germy germs that the little ones always seem to ooze. Well, I switched majors and became an accountant knowing in the deepest part of my heart and soul that my true calling would be as a mother. Those little ones would have my entire life and love devoted to them.
My desire to one day have a family was not a secret to anyone who walked into my life. I would speak of my love of numbers as an accountant, the love I had for travel and exploration and the longing I had for a family. I would ease them into a life with someone with a chronic disease. Most of the time sheltering them from the pain and suffering I face on a daily basis. Honesty was key and understanding a must. Love had to be unconditional and the wants and needs had to be mutual.
My time has always been limited. I did not have forever in this great age of medical miracles. At age twenty two the doctors told me that they would only support a pregnancy until I was thirtyfive. After that it could be risky and they were not sure it would be the healthiest option for me. Boy was I not ready to hear that at such a young age! So, I wrapped up this information with a blue and pink bow and filed it in the back of my mind as someday. The older I got I became more aware of this ticking time clock and started to look at the people who would come into my life as possible forever loves. One by one I was disappointed by their inability to commit and their lack of acceptance of my Lupus.
Someone walked into my life in my late twenties. This one promised me forever with the understanding that time was important. A life was being built, memories were being made and time snuck past so quickly. One day I looked at him and told him that if there is ever a moment in our lives that I am no longer the one he claimed I was and if I was not someone he could see starting a family with it was his responsibility to let me go so that I had a chance at a life that I truly deserved. Once more the promise of forever was made. He committed his life to mine through the words he spoke and the life we continued to build. As thirtyfive approached and seven years together had went by I finally asked for what we had talked about all along. I was ready for the commitment and the family I had dreamt of. When push came to shove I was told a few months prior to my thirty fifth birthday that he did not want to give me the forever we had built. I walked away from the life I had known knowing that the only thing I had left to focus on was myself and what I wanted for the rest of my life. I realized in this awful tug of war I had went through that no one was worth leaving my wants and needs that had always been so clearly stated behind. It was truly time to find my forever happiness.
As I healed I saw the truth in my heart shine bright! It attracted the kind of friendships and love that I deserved to have in my life. I found me again and was able to finally focus on my wants and needs and not on someone else's. Removed from the past I was dancing into my future and along the way I met my perfect dance partner, my other half, my forever love, my Greg. Greg dances with me through everyday on the end tails of giggles and laughter. I see what it truly means to be loved and cared for just as I am in this one moment. When the past walked out I realized what I wanted in a husband and more importantly in a father for my future children. I thought I had known all along but I was once again proven wrong but in the most positive way imaginable.
Yes, I waited to have children. I am trying so desperately to move past this lingering anger that seeps out of the cracks of my life when I am faced with the simple fact that those important years are gone. I feel as though I had time taken from me. I will never be thirty again. I will never be thirty three again and I most certainly can not move back to the year before turning thirty five. How do you move past that?
The answer is simple, I wake up everyday in the arms of my husband. I push past the pain in my heart. The pain that is realized when I think that I may not be able to give him a family. I wish I could go back and give those years to him. The years that would have allowed us to have more time and more hope than we face today for a family. Then in one moment I am brought back to reality. I am enough for him. He carries my Lupus with him everyday as a disease that we share. Every burden that rests on my heart he carries as well. I am reminded that through life I will never be alone. You see, we will be a family someday. Our baby I may not give birth to but the love we have for it has already been planted in our hearts and will be born of a dream that I have always dreamt of. One that is realized not just by its mother but also by its father.
Positivity is felt in every corner of my being. Hope is restored at the possibility of yet another chance that our miracle will find us. Our miracle that I have wanted for so long, now with an amazing husband alongside of me that will seamlessly transition into fatherhood with as much courage, endless love and unconditional support he has found in his heart for myself. We find each other amongst the uncertainty and bravely hold our heads up high until the time comes and we finally see the positive sign that our party of two will finally turn into a family of three.
I am not alone in this new and challenging task. I have found support and encouragement in corners of the world I would never have known existed. Other soon to be mama's have shared their stories of heartache and miracles. With each positive message I receive I draw on the happy endings and focus on what will be in the future no matter how hard the struggles are in the present. I am never alone and find the most amazing sense of comfort in this simple gesture.
When battling Lupus I have to examine every aspect of the disease and how it has tailored itself to me particularly. This allows me to compile a little bag of tricks that I can use to fight my everyday battle. Just when Lupus decides to surprise me I turn around and fight like a girl.......smart, courageous and relentless. As I stand at the bottom of the tall hill that leads me into battle with infertility I feel ready and strong as one foot finds itself in front of the other. It is a small battle in a war I have been fighting for years.
Over the past four months I have stocked a brand new bag of tricks. Tricks that will allow me to be one step ahead of everything and plan each and every battle precisely and methodically. In doing so I have made an amazing new friend at Fairhaven Health. She has guided me towards natural fertility treatments that could possibly help me on my quest for a family. i feel confident in her guidance due to the fact she has taken time to get to know me as well as my Lupus.
With the blessing from my doctor I have started taking two types of supplements: Fertilaid For Woman and Ovaboost. Ferilaid is to help restore hormonal balance to your system so that you have a better chance of conceiving and it aids in optimizing reproductive wellness. Ovaboost will promote healthy eggs in my system as well as protect them from free radicals we may come up against monthly that can harm our reproductive health. Used together my system has a fighting chance of normalizing and conceiving naturally.
After taking both supplements for almost two weeks I have already seen positive changes in my reproductive health. Due to my age, 36, and my Lupus irregularity has been a curse over the last few years. It has made it almost impossible to predict when I am able to conceive. Over the last six months I have had cycles lasting anywhere from 48 days to 78 days being the longest. My greatest hope is to just have my body do what it is naturally meant to do. This month was the only time I was able to test positive for ovulation and it was on day 17.......I am on schedule for a normal 34 day cycle this month!!!!! It is the most important change my body needed to be able to do. This is a celebration all in itself!!!!
I feel increasingly blessed as we go through this next phase of life. Support has poured from every heart that has come across our path. Words of encouragement have been collected and stored in my heart for the moment I will need to be reminded of endless hope. I look into the future knowing that this is a small dot o our path and the journey that starts with two will end with a third. I have prepared myself to root my feet in deep and not run as I am faced with fears around undiscovered corners. Please, if you find yourself thinking as you close your eyes for a restful sleep, send a happy thought towards the desert and it will find us and fertilize the ground we must hold steady to during our struggles to create our very own family.
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!!!!!
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!
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.
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.
