Carry Me Home

Sometimes I feel as if I am this tiny, miniature me in this giant world of harsh and terrifying obstacles I must muddle through. From the harshness of the outside world to inner heartache that sneaks up on you in the darkest moments of life. I feel as if I am staring up at everything and to get anywhere I must crawl through caves, climb steep cliffs and scoot over shelves without falling, tripping or just letting go and falling into the abyss that looms in the depths of the soul. 

Lately I have just felt so overwhelmingly beat up........physically and emotionally. I crawl through everyday and find comfort as the sun sets because I have made it through yet another day. I close my eyes and breathe a sigh of relief because for the first time since my eyes opened earlier that day I can find peace in my dreams and the quietness of the dark night. I can relax into myself. The phone does not ring, decisions do not need to be made and my body gives in and can not demand anymore from me. It is the break my heart has been waiting for and it is time for the voices in my head to go silent even if it is only for a mere six hours. I am finding comfort in these moments and solace in the solitude of the night. 

It has been months of struggle in every way imaginable. My body is fighting so hard everyday to keep itself going and I try so hard to push it to its very limits just so life does not pass me by. I want to be a part of the "in crowd" again. I want to be everywhere with everyone. I am done being left behind. However, once again my body has dictated something so different and I have found myself waving goodbye as life continues to rush by so fast that it has now become nothing but a flying blur. I feel as if I am trapped in this body! My mind is going a mile a minute and yet my physical form can not even comprehend what my mind is saying. My mind tells my legs to bend but as they bend they shake so bad that they collapse. My mind tells my arms to lift over my head and take in a giant morning stretch but the pain resonates as soon as my arms are at my shoulders. I have noticed that my right foot has turned slightly outwards to compensate for the pain in my hips when I walk. It is destruction on the most devastating level.........slow. My heart is broken by all of this and it breaks when I see the destruction it has on my loved ones. It hurts me so much to see others hurt because of these slow and painful changes. How do you cope with something you can not apologize for? How do you show sorrow for something that can not change? How do you lead as an example showing acceptance and love for yourself so that others will follow? You can't. You just let go.

I have almost crossed the finish line of 2013. I can see the light at the end of another very long tunnel and I am overcome by fear and excitement! Change is on the way for me and I am slowly warming up to the idea of change and new possibilities. I have hope for the future. Hope that this next year will be THE year that I am able to recover more and live better. I want to enjoy the moments of peace when my body is not demanding as much from me. I look forward to the moments of true happiness when the heart is not weighed down by fear and pain. Even through the tough times I find some way to hold on to hope and wonder for the endless possibilities in front of all of us. It is ok to break down and question life but to loose hope is not the way to live a life. So with my pockets filled with hope and possibilities I will focus on the light that is fast approaching and I may not be able to run across the finish line but I know I will get there with the help of my loved ones. I know if I can not walk myself that they will hold me up and they will carry me all the home. 

Broken Heart

I was not the easiest teenager to deal with. I snuck out, liked boys and tried to do everything I was told not to. Oh yes, I rebelled! I tested the waters around my mama's nerves until I found the one I could jump on the most and boy did I jump! I challenged her at every door we came to. I questioned everything she said and fought with her as much as I could. Through all of this she showed me what true unconditional love was. After all of that she was still my sanctuary. She was my calm in the storm. She guided me through the rough patches of life growing up and reiterated how this too shall pass. She cradled me when I cried over boys and mended my broken hearts with the kindness of words and the most gentle touch. My heart was glass to her that should never be dropped or broken. 

Broken heart.......how is that two words can break a soul, tear a person apart and leave you feeling empty? It leaves you laying on the grown in a pool of your own tears. No one can pick you up off of the floor. You just have to lay there in this pain that reaches so deep inside of you until you are ready to pick yourself up. You lay in this silence inside yourself with this pain just wanting to weigh you down. Life at that moment looks so bleak and you feel as if nothing in the world will make this broken heart, broken soul and broken spirit better again. You wonder if this ache will be there forever or will it in fact hurt a little less tomorrow, a little less a week from now and even more in a year. You feel helpless as if your life has been stolen from you and your love has been lost. Every moment of the past is in question and you hurt so much that it is hard to even look towards the future. The you realize that life must move forward and time will not pause for you to mend. You slowly wake up from the shock you feel coursing through your veins and are left with the emptiness where your heart used to be. It is at this moment that you must stop and look at your tears that have stained your life and choose who you are going to be. Are you going to be the one who is damaged by this one moment in your life or are you going to stand up, dust yourself off and slowly mend your wound with a sock monkey band aid? Are you going to let this moment define who you are or are you going do define who you are in this moment? 

I have and will always choose the latter of the two. I can and always will pick myself up off the ground as slowly as I need to and instead of dusting off myself I will change my clothes and start fresh and move forward. I will allow myself to cry, be angry and sad as needed but I will always get back up. I will be life's little punching bag and always come right back at it after it attempts to knock me down. My heart may be scratched but I will not let it scar. I will allow myself time to heal and only when I am ready, I will take my band aid off. Until then, I will wear it and slowly mend. I will find myself in this life again and find my path I am supposed to take. I will guard my heart and soul. I will carry it around in a box and be ever so careful as to not drop or break it again. 

The Ride of Your Life

I wish with all my heart that I could say I have only experienced compassion and understanding when it comes to being sick but I would be lying. I wish that I could tell the younger generation who have yet to experience chronic illness or disease that the world will be more open and understanding when it comes to their individual struggles and pain. I want to tell them that tomorrow you will have the help you need and the love and support from the world you were born into. I want to say that I struggled today so that your tomorrow will be better and your life will be easier. 

Instead I have to look at someone who was just diagnosed and tell them that they will not only have to fight for their life on a daily basis within their own body but that they will have to fight for the rest of their life against a society that looks down on those who are ill or may not contribute in the way that the world as whole thinks is appropriate. You will be judged, scrutinized and called a liar for the aches and pains your disease will inflict on you. Something that you did not choose will be your scarlet letter. They will point, laugh and kick you when you are down. You will have to tell your story over and over to deaf ears and minds that are closed off to anything that is not their reality. You will have to develop a thick skin not only for the needles that you are poked with but against the needles that fly out of other mouths mocking you when you wobble down the street. Hold on to that heart of yours and the soul that smiles through the pain. You will need them to pick yourself up on days when no one else is around. People will tell you you are not good enough or smart enough because of the cloud of fog that engulfs your brain. Jobs will come and go once they see how sick you really are and how there is no longer room for you when your body falls a little short. Friends will tire of you and walk away and loved ones who promised to never leave dig out a one way ticket  to anywhere but here. Life will not be easy and there will be days you kick and scream and throw fits you thought you left behind as a toddler. But do not worry because you are not alone.

Others will be going through the same trials as you. You will find that someone has already went through this years ago and can guide you along life with encouraging words and strength that you have yet to find in your young years of disease. Always remember that if today seems dark there will be sun again. If your loved ones have run away and left you behind look around and you will not only see that some remained but the ones that are still there with you are the strongest souls you could have ever wished for. You will find love from the most unassuming of places and hands will reach from the dark to help you only to later shed light on their faces. These faces will be your support group who will not only see you through today but will never leave your side tomorrow. They will remind you that you are worth every breath you take and that their lives are actually better because you are in it. You will discover your most inner strength that most will never uncover. After so many years you will finally have the courage to look in the mirror and you will see that the frail person you once saw is now replaced with an inspirational soul that no one will ever be able to kick around again. Until then, strap yourself in and hold on tight because it is going to be a bumpy ride. 

Wave

Exhaustion starts rolling in like a storm in the distance. The darkness creeps over you an inch at a time until it engulfs your body as a whole. It is not the exhaustion one would get from not sleeping or tackling to much in one day. It is the exhaustion you tend to get when your body on the inside just gives in. It has fought a battle and it just needs to stop fighting for a moment and regain more momentum to take on the next intruder. It is the exhaustion that is always the precursor to pain, stiffness and swollen joints. Every move you make taps into the underlying exhaustion and just making it from one side of the room to the other takes a lot work. Chewing food leaves you feeling as if you have just ran a marathon and forget the shower, just standing can feel like to much at this point.

My poor little body has be fighting a simple ear infection for weeks. It is the simple ear infection that now leaves me exhausted and all tuckered out. The constant pain has worn out its welcome and my immune system just was not able to do this one on its own so it called for little helpers within my own body. Those little helpers were of no assistance and left the immune system to fend for itself. The only problem, I have the most uneducated immune system in the world! When my body shouts out that there is an infection my immune system jumps right on in, just not in the right area. Instead of dealing with my ear somehow it miss communicated with its soldiers and directed them to my hips this time. This has left me with a wobble and limp that even I have to laugh at or else I will break down and cry. With this crazy miss communication I now have hip wobbles AND the ear infection. Come on immune system lets get it together!!!!!!

With this new wave of exhaustion I am left staring into space on the verge of breaking down. I wonder when this one will end and relief will begin. Why must it last so long and why must it come more and more frequent over the last few years? With the mystery of Lupus I feel shamed to ask these kind of question because there really are no answers. It is a lesson in patience that I am afraid I may never fully learn or begin to understand.

With the new wave approaching I brace for its impact. I close my eyes and think of the moment the waters will calm and where my body will find some peace and a moment respite. Until then I must hold this chin high no matter how much it hurts and smile through the tears and wait for the sound of laughter to once again ring in my ears. 

My Closet

Ten.......nine......eight.......seven........six........five.......four.......three.........two.......one............ready or not here I come!!!!!!!!!! My breath is held so tight because I know if I let out the smallest of breath my friends will find me and I will be it!!!!!!! So....I must......hold......my breath. I FOUND YOU!!!!!!! Finally I could burst out of my closet I had been hiding in!!!!!! Those dark corners were getting awful deep in there and that scarf really was reaching for me !!!!!! Dark closets are the best hiding places when you are playing but one of the darkest, scariest and most solitude places you could find yourself in at age six. Who knew that for the rest of our lives we would all be hiding and running in and out of closets when the coast was clear. 

When you are a younger you really truly struggle to find who you are. You surround yourself with people who you like in hopes that maybe, just maybe a little bit of their outgoing personality, their ability to get amazing grades or their strong sense of style will smudge off on you......you know, just a bit. You start to build yourself up with tiny blocks that have been influenced by the world around you. Some of the influences are wonderful and beautiful and some can be scary and not so nice. But in the end, it is all of those building blocks and all of those experiences that add up and make you who you are today. No matter what YOU see when you look inside of yourself someone else will see uninterrupted raw beauty that has taken form inside your soul.

Tim and I met through a mutual friend. We had both left relationships that were not right and we were looking to just have fun and experience life but what happened was that we experienced each other. We found true friendship on dirt roads and a growing admiration for one another on top of mountains between bites of a hamburger and very gross beer! Regardless, we found each other while searching for ourselves. 

I knew Tim was special from the beginning. He made me laugh all the time and the moments of silence between us were so comfortable and never had an uneasiness about them. We tried to force ourselves to eat dinner at our own houses but we always found an excuse to see each other every single day. One thing that Tim did not know was that I was hiding in a closet of my own. I had Lupus. I had met someone amazing and now I had to take the person he saw and mark her up with the truth of my life. I knew if I wanted to keep someone so special in my life my secret would have to be shared and I would have to emerge out of the dark closet and leave the scarf that I swore reached for behind me once again. 

It was a normal moment in a normal day. Tim was getting ready for work and I was all ready myself. I went into the bathroom, sat down and blurted out to Tim that I had Lupus. I was sick and I would always be sick. I explained to him that my immune system is sooooooooooo active that it can not fight the common cold that my body runs into because it is to busy fighting itself. I went on to tell him how my Lupus at that time was attaching my joints, muscles, brain and lungs. It could possibly attach other organs in the future or it could decide to give me a break. He took it all in and asked very few questions and we went our separate ways for the remaining part of the day. That was the longest day of my life. I had just told my best friend and someone who I could possibly love that the person they saw everyday was flawed in a way that could never be fixed. My heart ached at the thought of this being to much for Tim and my stomach turned over just wondering what he could be thinking. Finally towards the end of the day Tim called and asked what I wanted to do for dinner. 

I was terrified to share the hardest thing I had to go through in my life because I was so insecure with it myself. I put up walls, built a ceiling and boxed myself in. I was afraid to share something that was scary to me and I was terrified that someone else would not accept something that I had obviously not accepted myself. I had no idea that by sharing my Lupus with Tim would allow me to share my story with the world. I have learned over the years that disease does not define me, what defines me is how I handle my disease. There are hard days and days I cry but there are also beautiful days that are filled with smiles. I have learned that I am not damaged, I am special. I am not ugly when my hair falls out but even more beautiful because you can see me more clearly. Through the pain and tears there is joy and laughter. Time is not something that passes so quickly but is something that I have earned with grace. For me life is love and tomorrow may not be promised but today is.