Giving Tree

I lay awake at night listening to the sounds of the evening. I hear the buzz of the locust, the whistle of the crickets and stillness of the desert. I then concentrate on my body and can fill my creaky arthritic limbs settle in, the slow beating of my heart and the labored breathing of an asthmatic. Are these the noises I have heard ever since I was a child? No, there was a time when I would silently slip into sleep without even knowing time was ticking. Slowly sleep would creep over my soul and my body would lay perfectly still and rejuvenate itself as I slept the night away.

The Giving Tree is a book by Shel Silverstein. It is a story of a boy and his tree. It took you through the life of that little boy and how he grew into a man. It shows you how this ever changing boy would continue to take from his special tree. He grew older and still the tree continued to give. He would sell her apples, swing on her branches and run and play around the loving tree. As he grew he used her branches to build his house, her trunk to build a boat and eventually there was just a little stump left. Time changed and yet this strong tree dwindled in size but not in strength and love. Its loneliness was never thought of and all she wanted was to make her boy happy.

Lupus can take a lot out of you. It can take away your movement, cause nothing but unimaginable fatigue and physical markings that make you want to hide yourself away. As you grow older Lupus can take your ability to walk, eat and at times speak. Lupus takes so much from you and gives nothing in return. You grow old with it and your life changes as your Lupus changes you. You do not have a say in what this disease holds. You are left in moments of complete loneliness with no one to confide in. Still it takes and yet still you must give. 

I am the giving tree. I give to something that does nothing but take. It robs me of my independence and my physical strength. The simplest things in life are not so simple anymore. Careers are set a side and the thought of family is destroyed. Yet somehow, like the giving tree, I continue to grow in strength and love. I reach for kindness and surround myself with happiness and joy. As time marches on and Lupus takes a hold of my physical body it does not hold on to my soul. Courage is reborn and beauty is found in the simplest things. As the giving tree grew with the young boy she shrunk in size. In the end all she was was a stump for the old man that once was the young boy to rest his sleepy legs on. Lupus can take all it wants from me and if in the end all I am is a little stump for others to rest their sleepy legs on, I too will be happy:-) 

Summer Heat

When I was a kid I dreaded the onset of fall days. The sun would set so early and the night robbed me off my play time. I would anxiously wait for summer to arrive. Long days and the late rising moon would allow me to steal just another minute outside with my friends Oh, how I loved that time of year! The sun was never toooooo hot and the day was a magical time where corn fields could be explored barefoot, popsicles could be swindled out of everyone and the everlasting joy the summer brings to a child was magical!

Now I am all grown up and summer means something completely different. I live in the desert of Arizona and what the sun brings is anything but magical!!!! There are days that the sweltering sun could bubble anything off of the pavement, including the soles of my shoes. I am not exaggerating! I have lost fancy shoes, tennis shoes and even flip flops to the pavement gods and I have learned to run over them before they can catch my feet!!!! I watch the clock every night at the end of July to see when exactly the days start to shorten.......I would like to inform you all, it has not happened yet. Everyone describes this heat as a dry heat and yes, it is not as humid as the Midwest BUT with hopeful monsoon storms rolling in nightly, well, lets just say, it is a swamp out there. To top it off........the monsoon's rarely produce any rain!!!!!! Blah, is it winter yet??????

Another challenge for me is my Lupus in the summer. Severe changes in the weather, such as real hot days or real cold days, can throw your body into a complete nuclear meltdown! Pain is extremely exaggerated and the fatigue is indescribable. The pain I have dealt with before and the sleepiness is always a battle but for some reason right now the fatigue is like something I have NEVER experienced EVER before. 

I have a secret to share with you......come closer........ok, I FELL ASLEEP WHILE EATING MY LUNCH TODAY!!!!!! Yes, you heard me right. I just feel asleep!!!! No warning or anything! I laid my head back on the top cushion and had my plate on my lap. The next thing I know it is forty-five minutes later and my plate or my head has not moved!!!!!!!! Yep, I cracked myself up!!!!!!

I know what you are thinking......put the remote down and crawl into bed early. I would love for it to be that easy. You see, most Lupus patients do not hit the deep sleep we all know as REM sleep. Instead we seem to dance around it all night. When you wake up, you know you did the jig because you feel even more worn out than the night before! Due to the fact that you do not hit this beautiful utopia of the REM sleep your body is always a bit more alert than most; therefore, you will be more aware of your pain, noises and just the ups and downs of the night. This leaves us more exhausted, in more pain and unable to do normal things that you would do throughout your day. 

I hate this exhaustion to the core of my Lupus! It makes me feel horrible and look lazy to others. It as if I have no desire to those on the outside looking in but that is not the case. I wish I could toughen out the heat and not develop a rash just from being outside for two seconds! I would love to walk to the kitchen and not feel like I need another nap! I would love to be able to put on a tank top and sunscreen and feel protected from the sun and all its glory! I would love to be able to swim all day with only short breaks for snacks! I would love......I would love......I would love.......the story of having Lupus. The truth is that these are part of my limitations. Not limitations I put on myself but limitations my disease weighs me down with. These are limitations that I could challenge but I also know the feeling of devastation when I reach the other side and a flare is glaring right at me shaming me with a wiggling finger knowing I know I have done wrong.

So, today as I wake up from my mid lunch siesta and I will finish my lunch like it never happened. I will wash my dishes even if it take the next few hours and I will run outside to flood my garden like I am being chased by a pack of wolves!!!!! I may seem sad and extremely tired today but in sixty-five days fall will begin! I will celebrate and jump for joy as the days get shorter and the sun has less time to bake me! I will celebrate the shortest day of the year because that is my most favorite day of the year! I will enjoy the cool winds blowing in and relish in the evenings safe on my porch. I will celebrate my time and make so many memories that they will get me through the next summer and the next summer and the one after that..............

Gone but never forgotten...........

Today I watched the memorial service for our firefighters that died protecting one of our very own cities in this vast state, Arizona. There in front of the stage was what remained of those brave men......their jackets, helmets, boots and axes. What we could not see were the most amazing creations these brave men left behind......their families. I did not personally know these extraordinary men or their beautiful families but what I do know is the love of a family and have witnessed the courageous fight of the human soul. 

Today with the luck of the universe we will all make it home safely and enjoy the evening as the sun sets and the wind blows. We will wake up tomorrow to the sound of life and simply enjoy the moment when you know another day is about to begin. It is the magical moment when you realize that anything can happen today and possibilities are endless! You have been blessed with another day in this breathtaking world. 

As I watched and listed to how these brave men will be remembered and loved for a lifetime I realized that we have a choice on how to live our own lives and how we will be remembered when our bravery is called out and we must fight for our own beliefs. Your sacrifice may not been know to strangers and those who remember you may not be speaking to the world but the mark you leave is just as important. You may choose to live a life of pure love and honesty. You may choose to make others giggle or you may bring smiles to little ones faces. It does not matter if you are a homemaker, executive or politician. No one chooses your path, no one except you.

So thoughtfully choose the path you travel and remember just because there are a lot of footprints before you does not mean you need to follow them. I heard a remark today.........we are all born as ordinary people but the way we choose to live our lives will make each of us extraordinary people. 

Lack of giving..........

I would not normally describe myself as a selfish person. I have an eminence amount of love that I try to constantly give and I have enough smiles in my back pocket to share with the world! However, I have realized lately that it is very easy for someone like me who has an illness that is constantly watched by the medical community and a daily routine that is always on your loved ones minds that it is easy to to let life revolve around you. Moments tend to be more about you even when you are not physically present in them. Doctors want to know what your insides are doing and family and friends are always worrying and questioning how you are truly doing behind those glistening eyes. 

I have come to a point in my life where it feels as if everything must move so quickly. Moments must happen quickly before they slip through my hands. I have been so consumed with focusing on these moments that I have found myself slipping into this dark whole with room for only one, myself. Sadness has filled my heart knowing that my own wants and needs have surpassed the wants and needs of others. I feel as if I have failed those around me during these selfish moments. There were moments where I insisted everyone to know and understand what it felt like to walk in my shoes and feel through my heart when really I needed to step out of my shoes and slip on theirs and love through their hearts. 

Honesty is so hard to give when you are the one who is admitting the lack of understanding and compassion. I realize I am not the only one who suffers with Lupus in my life, everyone does. Everyone knows what it is like to see me stuck in bed, missing outings and having to pass on the silly moments that present themselves. It is the constant love and support that gets me through those tough times. It is their love and understanding that allows me to get up everyday and shout to the world it hurts or that it is a fantastic feeling day! 

Thank you! Thank you to my friends who continue to invite me to the balls of life even when 90% of the time I can not make it. Thank you to my love who never runs away and keeps me going everyday. Thank you to my family who constantly have me in their thoughts and in their hearts. It is all of you who make me feel safe enough to say I have given to little lately and would love to give more. As a friend I will continue to grow and fight through everyday because I know when I wake up tomorrow you will all be there cheering me on!

Glass Case

One of the silliest movies I have ever seen is Anchor Man. I hated that movie when I first saw it but then I watched it with my sister and I saw her crack up over the entire thing made it so special that it has now become one of my favorite movies! There is a line in the movie where Baxter the dog has been kicked over the bridge and Ron Burgandy is in a phone booth yelling that he is locked in a glass case of emotions!!!!!! All I have to do is watch this clip and send it to my sister and my day is filled with laughter and joy! It is amazing how such the simple act of laughter can make an impact on your day.............a five second belly laugh and the next 23 hours will never be the same!

As positive as I am I have been struggling over the last few weeks. I haven't been well and days and nights drag on and seem to melt into each other with no real difference. The sun rising just allows me to see the pain I am in and notice the things I can not do. The night encompasses me with the intense feeling of the pain I have tried to ignore in the light of day. It has been a battle to get out of bed, tend to my ever growing garden and find joy in simple everyday moments. I am hunting out the free feeling that five seconds of laughter will give me.

I spoke to someone yesterday who had some experience with auto immune diseases and he said they were the worst diseases that took the hardest toll on lives that are affected by them. He told me that he was oh so sorry and to expect moments of resentment and loss directed at me personally. He told me to prepared for the ones who love me the most to actually dislike me the most. This dislike does not resonate from hatred towards me personally but this disease that seems to tag along like a shadow. I understood what he was saying but I just could not believe him...........I will now believe him. I will not let him and his viewpoint lock me into a box and throw away the key. This is my life and my heart and I will decide who and when it breaks. 

I may be locked in a glass case of emotion but........look it is glass! I can see out. I can still see the sun and feel the warmth through the case. I can see clouds roll in and watch people pass me by. I can still see my friends and family. There may be times when I can only feel them ever so slightly through the vibration in the glass but they are still there. They have never left. No matter how dark the nights get and intense the pain has become there is always someone there to give me my five second laugh. How can I believe that a life so precious can lead to so much anger? I will not let it happen and I will not allow my disease to take away the one thing that I have left to control......my heart.

Life is beautiful no matter where you are watching it from. You just have to choose to open those beautiful eyes of yours and take in whatever passes you by and grab onto the things that you can not live without. 

Make some noise!!!!!

I love dance!!!! My love for dance sprouted very early in my life. Holly and I would put on Debbie Gibson, Tiffany and young Madonna records and put on shows for our parents. We danced all the time!!!!!! When I was younger my mom decided to enroll me into dance class. I was clumsy but what could dance hurt?!?!?! So into ballet I went. Oh, ballet is beautiful don't get me wrong but it was not for me. My mom tells me the story of one show where I had danced in my pretty pink tutu and sat and watched the others perform. When the tappers came onto stage I cried to my mom..........but I want to make some noise too!!!!!!! So, off came the tutu and in its place were shiny patent leather shows with taps on the bottom that allowed me to make as much noise as I wanted.......maybe even tooooooo much noise for my mama.

As I got older I continued to dance. I practiced when I was forced to and performed at competitions and recitals until I was in my early teens. Dace was my life line and I loved it more that you could ever imagine. I continued with tap and jazz and never put on that tutu again!!!!!

I remember when Tim and I first met and I would dance around the kitchen as we cut veggies (no knife for me) and I would just step and twirl and bow! It was me showing him my innermost being. I loved dance and dance made my life beautiful.

As time went on and my Lupus acted up more and more and the ability to move fluidly disappeared and twirls were replaced with limps. My beautiful dancing feet had be stolen from me and in its it place there were these stumbling, numb things that did not belong to me. I loved to dance around the kitchen and spin around the room. I lost my beauty and sadness set in because I knew in my heart that as time marched on and my Lupus progressed dance would become a thing of the past...........something I used to do. It was one of the hardest realizations in my life. Movement now became something I had to do to eat or go to bed. Movement on someday's is impossible and I rely on others to help. Lupus robbed me of my dance and I want it back!

Again, I am faced with a choice and to me and my love the option is very clear..........I will continue to dance! I may not move my feet myself but others can. I bask in the beauty others express as they move and interpret the music. I close my eyes and I can also move. You see, I will always be a dancer. I respect movement and what it shows to the world. I will always dance with my heart open wide! I will raise my arms to the sun and spin around even if it is only for a moment. I am a dancer and boy can I still make some noise!

One year and counting!!!!!!!

I remember being in kindergarten and hearing my teacher tell me about middle school, high school and college. Boy did that seem impossible! The time between those events were too much for my little noggin to comprehend but it all happened, just like my teacher told me! Life happened and memories were made that would follow me forever.

Did you know that it has been almost a year since I first posted on my blog. When I started it was a time of change in my life. I had to start a round of testing that lasted almost six months. It was a scary time in my life and I need to reach out. I wanted to always be honest and I wanted to bare everything in my heart and soul. I wanted others to truly feel as if they were a part of my life and what I was experiencing from day to day.

This blog was supposed to be centered around being sick but now I look at it as a sounding board. A way to convey my heart and my thoughts at a particular moment in my life. I wanted it to be small snapshot of my life during those moments. There were moments of fear, loneliness and solitude. There were moments where my life way nothing but lab coats and testing that would resonate to the core of my being and cause so much pain all I could do was lay there and wait for it to pass. There were also moments of surprise and wonder. There was joy and celebration of life even when it was dark. There was happiness and at times you could read the fear melt away.

This blog has saved me. This blog has allowed me to reach out to others and to touch lives and give a better understanding to what it truly means to be sick with a disease that will never go away and then CHOOSE to live with it. I wanted others who struggle everyday to have a place to come to and read someone else's experience. They can laugh and cry but always walk away feeling less alone. All I have ever wanted to do was to allow others to have the opportunity to engage and to learn something.

This was a tribute to those around me who have loved me so unconditionally that a new word should be developed for all of them . Something like fantasmicamazeme!!!!!!  It is not easy choosing to love someone with a chronic illness but if you do be prepared to see the world through rose colored glasses and to open your eyes to horses that if you feed them popcorn will change into unicorns. Expect to experience life to the fullest and never have one regret because why leave this world with regrets when you have time to make them happen?!?!?!?!?!

So, happy birthday to The Things They Don't Tell You!!!!!! You have been my outlet and hope and I can not wait to continue to share my story with others<3