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!!!

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.  

Shower Away!!!!!!

Today I was showered with love by some of the most amazing women in my life. These women have been there for me through some of the scariest moments of my life as well as some of the most amazing! From holding my hands in the hospital, to cooking smores by the campfire and opening their front door and holding me as I fall in in utter heartbreak. Each has formed a memory in my heart that I carry with me every moment of everyday. Life becomes busy and moves quickly but those memories I can pull out one by one and remember the love that only exists between the souls of women. 

This bond we form with each other carries us through the best of times and the worst. Heartbreaks are handled, babies are welcomed and the mundane moments of everyday life are looked at as a journey that we travel together. Loneliness is felt in that moment the phone dials and disappears when the word hello is heard on the other end of the line. Miles may separate us physically but distance is no match for friendship and the bond never lessens as time marches on. It leaves me pondering the true meaning of what a soul mate is to each and every one of us.

Most think of soul mates in the sense of romantic love but what if we truly step back and look at all aspects of the love in our lives? Today as I looked at every face that walked through the door and felt the embrace of love by each and every one of these amazing women in my life I realized that this, this one moment where everyone was in the same room, these are my true soul mates. Each one meets the need of my thirsty soul in their unique way. From their independence, their love of family and their adventurous souls, each of them is truly a part of me. I turn to them for love, encouragement and support throughout my life. There is never a moment of hesitation when it comes to friendship. There is no sickness that divides just compassion that conquers. The ending of chapters throughout the book of life may close but each new chapter opens one after the other with the same beautiful faces I see in my friends. Because of them I truly feel my blessings and bask in their lights of love.

Over the last few years you have all played a part in the healing moments that resulted in the reincarnation of hope. You have picked me up and held me close on the days and nights I could not breathe on my own due to pure emotional exhaustion. I was shown that I am beautiful in all of my purity just as it is in these moments of life. As days marched on I became even more secure in my fight against Lupus and you each have showed me that Lupus does not define me but should be worn as a badge of courage everyday that I am blessed to wake up to the warmth of the sun. You have rebuilt a shattered heart and gave me the strength to stand up for who I am and not shy away from the things that mean the most to me. Because of all of you I rediscovered love for myself that I put back out into the world and what I found on the other end........my Greg. 

You may not be there physically as I walk down the isle but I will see all of you in the tears of joy shed, the cutting of cake and zip lining through the rainforest! For this day would not be possible had I not received the unconditional love from each and everyone of you. You are my soul mates today, tomorrow and will be there celebrating life's adventures for the rest of our lives together. So, bumps along the way, bring them on because my army is many and our love is truly deep.

Life's Constant......Change

Someone very wise pointed out such a simple fact but one so many of us look over or even run from. The one constant in life is change itself. It is something we can always count on and must learn to accept. In his wise words he broke it down for me. We have two choices when faced with life altering change, we can either accept change and see the beauty it allows and grow from it or we can push back until we are forced into the abyss of change with a feeling of losing control. Either way change will knock on all of our doors numerous times throughout our lives. You get to decide how you will answer that door and address the change staring back at you.

A year ago I went through one of the biggest changes I have ever come up against in my thirty-five years. I was so afraid, uncertain and lost in a world I no longer recognized. There was no point in fighting because it was at the front door asking me to walk through and leave everything I had behind. Embracing this moment of change forced me to feel pain I never knew existed. I would experience a loss that would make me question everything I had known. I looked back and only saw the past and a door that had been closed and would never open again. 

Moments went by and those moments turned into hours. Hours turned into days and before I knew it months had gone by. As I slowly began to heal internally I was able to feel the numbness disappear and it allowed me to open my heart back up to the possibility of loving once more and being loved back. Fear was replaced with silent wonder and once where tears fell a smile was reborn. Faith was once again found and love entered through the front door. Change allowed negativity to be replaced with laughter and once where dread lived a new found hope was discovered. 

Now that the fear and pain has truly become a moment in my personal history and has been left in the past I have a new future beginning right in front of my eyes. I will soon take my first step as a new wife and look forward to the upcoming change in my own personal family dynamics. As I step towards my soon to be husband I realize this is also a side of change. A beautiful side that would never had been discovered had I not felt the fear and pain of a change that hurt beyond belief. The pain has allowed me to feel true love and commit my life to another. 

As I reflect once more on the wise and honest words of my dear friend I am reminded that had I not embraced change even with all the pain I would not be in the moment I find myself in today. I had to feel the deepest sorrow and sadness in an overwhelming darkness to truly see the light of hope. Every moment of everyday is filled with joy and I feel a stronger sense of self  knowing that whatever change life will continue to hand me I am a strong and beautiful survivor of moments of uninterrupted change wave after wave. I am no longer afraid of opening that door when change comes knocking.Instead of opening the door in complete fear on what could possibly be I shall open the door, stick out my tongue, giggle and dance to the beat of the ever changing drum on my very little tippy toes!