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.
I have a confession...........I love to sneeze!!!!! I have no idea why but I do.......hehehehehe!!!!! The one thing I do NOT like are the hiccups. I have heard so many little things that you can do to cure your hiccups. I have drunk a glass a water backwards and let me tell you, be prepared to basically give yourself another shower! I have held my breath, been scared and even stood on my head! What I did learn is that hiccups will come and go.
I think the little hiccups in life are things that, they will just come and go. We will all face adversity in our lives. We will face illness and we will face death. You can not close your eyes, hold your breath and stand on your head to get rid of them. They are what they are and the question is how will you deal with your hiccups in this life?
I have had my heart broken so many times because of the hiccups that rolled through my life. I could have stopped and waited until they passed but in stead I chose to carry on. For instance, I am sick but I am also a happy, positive person who knows that my hiccups are not permanent. When I see those hiccups in my life coming I do not run from them instead I picture myself jump roping! Yep, jump roping! I close my eyes and jump and jump until I jump right through that hiccup!!!! It does not stop it from heading your way, it just prepares you to face it and face it in a healthy manner.
Remember, hiccups are going to come and go. Some may last longer than others and some may even be life changing but there is nothing in your life that you can not handle. Just continue to carry on.
Growing up in the Midwest I loved everything that spring represented. Spring represented rebirth and new life! Everywhere you looked something was coming alive! Flowers of hundreds of colors could be seen everywhere you looked. The sky was so blue that you could swear you had never seen that shade of blue before. The birds started to emerge and surrounded us with their beautiful songs from sun up to sun down. Trees were budding and soon you would hear the rustling of the leaves as the spring breeze blew in. The smells were sweet and vibrant and triggered images of fresh fruit and children laughing and running barefoot through the fields! Life emerged from every corner. Doors were opening. Windows were being cracked for the first time in months and in came the spring breeze and out blew the quietness of winter. The darkness of winter would soon be left behind and the newness of the world would be seen by everyone!
I find it very fitting that May is National Lupus Awareness Month. It is the heart of spring and in the newness emerges new hope in every Lupus patient and floods the world. It is time to see the beauty in everything and have hope that this is the year where we will be reborn again and a cure will be found! Hope is around every corner and the beauty of Spring fills us again. When I think of all of us who suffer from the mysterious disease I close my eyes and see thousands of us standing in a field and each of us shines with a different color. It is not ugly and it is not scary............it is beautiful and we are beautiful! Our scars on our faces, swelling of joints and the inability to move is left behind and we emerge to greet the spring with wonder and joy! In this field we all have billowing hair that has not been ravaged by chemo and it blows with the sweet breeze of spring! We rustle just like trees that are coming back to life. We bask in the warmth of the sun and for once we are not afraid!
Just like the flowers in the field each Lupus patient is different and the disease ravages our body in its own way. Even though we are each affected differently it is time to stand together as one! Our voices need to be heard and we need to remember to inspire everyone we meet. With inspiration awareness is born. Awareness and inspiration are the birth places for innovation, new testing and one day a cure! Today close your eyes and put yourself in that beautiful field and gently hold the hand of the Lupus patient standing next to you. Raise your heart and your voice and lets make a stand..................we will be heard and we will not be forgotten!
Growing up I was the little girl who just wanted to fit in. I wanted to have friends on the playground and I wanted to have friends who would knock on my door and ask my mama if I could come out and play. Eventually that happened and in order to keep that I would go above and beyond to be kind to others. At times I would probably be tooooooo nice. People would still make fun of me and treat me poorly because they knew I would come back to school the next day and be their friends. As I grew up I would continue to see the way people would treat each others. The cruelty that would come out only because someone was a bit different. However, those people who were treated poorly would still come back and show great kindness because being treated poorly was better than being invisible and treated like no one.
I was taught the Golden Rule as a child.........treat others the way you would want to be treated. I swore to this rule as a child and as an adult but recently I have found default in this Golden Rule. There are some days when you can go out into the world and kill others with kindness because that is how you would want to be treated; however, this is not returned. What do you do when you try so hard to treat someone with love and loyalty when you are a door mat? How do you continue to be this kind person who shows so much love and kindness but can not see it surrounding them? What if you are made fun of or judged based on something you have no control over? What happens when you are kind and try as hard as you possibly could but find that no matter what you have no control over what happens to you which in return hurts your loved ones?
You see I did not realize when I got sick that my life would change so drastically and that Lupus would not only affect me but also my family and friends to such a degree that some would just leave because they could not handle what this disease would show over time. I am the same Danica who ran home with tears in her eyes some days after school. I still run home with tears in my eyes after appointments, hospital stays and treatments. I still ask why everyday. Why does my life have to be altered so much because of a disease I did not ask for or have control over. I do the best I can with what I have. I am bright, Lupus beautiful and have so much love and kindness to still give but sometimes I run into these hateful and hurtful walls in life. I feel punished for being sick and I will miss out on some of the most important moments in our lives all because I have a disease called Lupus and all the details that come with it. What makes me so mad at times is that I am seen as the sick girl, Danica. Really I should be looked at as Danica only. I am not my disease and my disease can not rob me of who I am. So, if you do not like me I am ok with that but if you do not like the challenges of what a chronic illness brings to an individual and therefore clouds your judgement so much that you do not see me, the real me, then I do not need you or your shinanigens in my life.
It is Lupus awareness month and all I ask of you is to show a little more kindness and compassion for those around you. They may be sick or they may be healthy but they to still just want to be loved. So, what are you waiting for? Go knock on their door and ask them to come out and play!
You have only been gone for a few weeks but now you can see from where you are that you were gone for a lot longer. I am sorry that you had a disease that no one could help you with. I wish that something could have kept you with us a bit longer before you slipped into the world of the unknown. We never left you alone. Mom and Aunt Gail were there almost everyday and they would visit and talk with you even if you did not recognize them. You raised daughters who would never leave their mama alone in this world. Us grand kids would come and visit when we could and I tried to talk to you even up until the end. We would continue to celebrate your birthday and each holiday with you. Those are the types of children your daughters raised. We all stuck together as a family and we said goodbye to you as a family. You were never alone even though at times you felt as if you were surrounded by strangers. We never stopped loving you and we never will.
I can close my eyes and see you in your old kitchen clogging away, teaching Holly and I the best you could. I think Holly and I both got our love of dancing from you. Oh grandma, I can close my eyes and hear you call my name. I remember every time we talked I asked how you were feeling and you would always reply fair to midland. It makes me smile just writing it out. You were so beautiful in this world. Your smile lit up every room and I could hear you smile through your voice even when I was so far away. You always knew what to say to make me feel better and you stuck beside me as I went through some of life's toughest hurdles. You were always one of my biggest fans in this world and I yours.
I don't know how to let you go. I was looking through my contacts on my phone and there you were. I wanted to call it just hoping to hear your voice one more time. I still can not remove it but maybe over time I will be able to. Thank you so much grandma for teaching me lessons in love and life. Thank you for raising wonderful daughters who in return raised us. We will all be ok but we will miss you especially through out the next year as Mother's Day comes and goes. We will miss you at Christmas but will continue with your cookie making tradition. We will miss you on your birthday and everyday that follows. You were the song in our loves and now we have to learn to march to the beat of our own drum.
One more thing grandma.......lean in, I have a secret for you.......I love you, don't tell anyone.
As a little girl I looked at getting older as this amazing thing that happened every year. It was marked by family and friends, presents and lets not forget, CAKE! I looked forward to getting older. I celebrated the milestones just like everyone else. I turned sixteen and I started driving. I turned eighteen and started college. I turned twenty-one and yes, had my first drink and my first date with the Porcelain Gods! It was exciting and you could just feel that you were on the brink of a new challenge, a new adventure but once you pass your special milestones and you really grasp what getting older means you see how life is going to continuously change and not always for the better.
I have been doing a lot of internal searching and have been trying to find my way through a world that seems so scary and lonely right now. I lost my grandma a few weeks ago and I have struggled with the loss. She was the best grandma in the world and I have so many amazing memories but thinking about them still brings tears to my eyes so I am locking them in my heart where they will be safe and never forgotten. I miss her so much and I am so thankful for the 33 years I had her in my life. I will carry on her traditions through out my life and some day the tears will turn to smiles and laughter just as it should be. I am just navigating the waters the best I can at this point. I do think there are times when I need a giant purple unicorn inner tube to help me float along the way.
So, as my birthday approaches this year the joy I felt as a kid is missing and the reality that I am getting older every year and knowing that life does not wait on you to be ready leaves a little bit of a sour taste in my mouth. I know this taste will pass and I hold out hope that one day birthdays will become magical again and even at an older age, wishes can still come true.
We are taught very early in life that when we hurt someone we have to say we are sorry. After that we need to be kind to the person we hurt so that they continue to know how sorry we really are. We never want to hurt anyone or make them cry. We never want to make anyone angry and when we do we have to ask them for forgiveness.......this again is in the form of I am sorry. After this initial lesson is taught to each and everyone of us it helps to shape how we perceive others and how we want to be treated. For me I know I never wanted to hurt someone as a child and it has followed me through my life. I never want to make anyone sad or feel hurt by the things I say or the actions others see from me. In my mind and heart it is common sense. I would never want others to hurt me so why would I ever want to hurt them?
When I reflect over my life ever since I was diagnosed with a chronic illness, sorry has developed a different meaning in my life and others who suffer on a daily basis. Sorry tends to become an easy word shared by me to others for things I really should not feel sorry for. I should not be sorry that I am unable to go out and run around for an entire day. I should not have to feel sorry for medicine that keeps me alive making me so sick. I do not want to apologize when life is moving so fast and I physically can not keep up. Most important, I should not feel sorry for having Lupus. I hurt every moment of everyday and at times I close my eyes and picture myself listening ever so closely to my body........I imagine that my little cells and my little immune system whispering to me they are so sorry for hurting me but they are just so confused and they are not sure where to go in the mess of all that is my Lupus.
I used to feel so sorry for my loved ones because they had to see me hurt so much and they would get frustrated when they did not understand. I used to apologize for not being able to make it to certain functions because it was to much for them to even step a side and try to see how sad it was for me to begin with. My pain and suffering made everyone so sad and even angry at times and because Lupus could not say sorry I always thought it was my responsibility to make THEM feel better and lost sight of the fact that I was left with no one making ME feel better.
The cruelest thing about my Lupus is that it is not like anyone else's Lupus. Everyone's Lupus is as unique as the individual it affects. That is what makes Lupus so challenging and leaves you feeling so alone. You can be in a room full of people and there will be times when you have never more alone in your entire life. You will be in an emergency room and no one can really help you so you become their medical mystery case for that shift. Doctors will record your symptoms and listen but are never really able to help the disease itself, they just make you as comfy as can be. Family members start to see you as a burden and instead of just walking away punish you with feelings of anger and remorse that they carry everyday because someone they love needs to be taken care of a little more than expected. See, you can see where someone who is sick feels like they always have to apologize for something that they never will be able to control.
You see, Lupus along with other autoimmune diseases flare up at the drop of a hat. The weather changes and you feel yucky, you did not sleep enough so you feel yucky and the little stressors in our everyday lives cause huge reactions from our diseases. Should we be sheltered from daily snags in our lives or hidden from all things that stress us all out? No, we just need to be handled with a little more sensitivity and a little more caution. We are like that very special plate that has been handed down from generation to generation. You bring it out to show everyone its beauty and so that everyone can see how important it is and enjoy it BUT you handle it with gentle hands and you may need to be little more careful with it.
I have Lupus and I would climb to the tallest mountain if my legs would let me and yell it for all the world to hear! I am not afraid of my disease and I know I deserve so much love despite my disease. I am beautiful even thought I carry around a giant purple L. I have a purpose in this life and it may not be the one I started out with years ago but I have grown into this purpose through understanding myself before and after my disease. I am not alone and I know there are others who have so much love and compassion to give to me. I should not be written off because I am sick but should be embraced because I have something to teach you. Do not run from me or hide from me. Do not bully me or be nasty to me. Love me ever so gentle with immense amounts of kindness and who know, maybe one day I will change your life not because I am sick but because of who I truly am despite being sick.
I opened the window this morning and I took in a long breath and the cool damp air filled my lungs and brought joy to my heart. A smile crept onto my face and for a moment all was well with the world. Tim and I had breakfast and just like every Saturday morning I saw him off on his bike ride. My world is exactly as it is supposed to be......filled with love and life. Then I remembered that not everything in this world today is right, there is great sadness that has filled my friends world. Today she will lay her husband to rest and her children will say goodbye to their dad. This is a reminder that we have today but tomorrow has never been promised to any of us.
The beauty of life and this world greets us every morning but there are so many mornings we take this for granted. We forget to tell our families we love them one more time before we step out of the door and into the world. We forget to show simple kindness to strangers because why worry about that today, we always have tomorrow. What if you didn't? What if you knew that all you had was today? What would you do? Would you sleep in past the calling of your alarm? Would you call in sick and spend every waking moment drinking in the love of your family? What would you do if you didn't have a tomorrow?
What we would each do does not matter, what matters is that you have a list and the list continues to get longer and longer because like the saying, why do today what you can put off until tomorrow. Stop adding to your list and do something right now! Spend a little more time with your family and make sure every moment they know how much they have been loved. Smile! I have heard people say that one simple smile from a stranger turned their entire day around. Make someones day with this simple gesture of warmness. Eat dessert before dinner and then again after. Show kindness to yourself. Accept your faults and love the moments in life that have made you who you are today. Forgive yourself for your shortcomings in the past and remember that many people love you just as you are in this moment. Be thankful for what you do have and stop worrying about what you don't and remember the only reason your neighbors grass is greener is because they do not mow it.
We each have such a limited amount of time in this life. We do not know when our last day will be but we can prepare the world we leave behind by touching everyone's lives you come in contact with. Do not make your mark on this world by how you leave it, make your mark by the memories others will carry on. Love, laughter and kindness, you can not think about those words without smiling. So what are you waiting for? Decide today that those are your priorities and if for some reason your tomorrow never comes at least you didn't put off today what you could have done tomorrow.
