I belong to an amazing forum dedicated to the diagnosis, prognosis and reality of Lupus and all it affects. Anyone can go to this website and express in that one moment what they are feeling and their fears that have crept up from a normal day to a life changing moment. I especially love the area where new users are encouraged to come and introduce themselves. You can be an individual who is in the diagnosing phase or even a family member who watches their loved one suffer in silence. It is a place for everyone and of every kind. I have found that most introductions start out by stating the obvious.....I am not well......my loved one is not well.......I am afraid I will never be well again. It is the opening of ones heart and soul that creates this relationship full of unconditional kindness truly from strangers you will more than likely never meet. These strangers make life as you know it normal and they allow you more resources than you could ever find through Google.
For me and I know for many other people who have Lupus and other autoimmune diseases this creates a nagging feeling of not being good enough anymore. You don't only mourn the loss of your old self, you also mourn this loss for your family and friends. You wish you could go out and play all day and you wish you had enough energy to donate to a puppy or even a child. This has been taken away from you but it has also been taken away from your family. I have felt this way numerous times through out the progression and changes of my disease. I have been left before and I have been told that some people can not handle life with someone who will be sick. I have people ask me how mad did that make me? At first I am sure there was anger but I moved passed that anger very quickly and I understood. It takes brutal honestly to look at someone in the hospital and say I can't do this. It is not fun being on the receiving end and believe me I had to go through some life changes to move past loved ones and friends just not handling it.
What this did create for me is it created even more of that vulnerable feeling you already have. You question if someone can love you, big elephant in the room and all! You question who will I be and what does this mean to me and my future. It opens up a door full of these thoughts and emotions most people will never face in their lives. It sounds very negative, I know....and honestly at times it feels very negative BUT it is through those vulnerable, hurtful situations that you as an individual are born. My mom and dad created me but it is my life experiences that have shaped me.
I wish that I wasn't sick. I wish that I did not have to give myself a shot of poison just so my body can survive. I wish I could fall asleep on my own and stay asleep until morning. I wish that I could go to the gym everyday and run until I want to faint. I wish I could mountain bike with Tim and have enough energy to just try to keep up. I wish Tim did not have to carry the weight of both of our worlds on his shoulders every minute of everyday. I wish my family would not have to get that phone call in the middle of the night that I am in the hospital. Do you know what I wish the most..............that my pharmacist would not know my name and all about my family!!!!!! That is when you know there are no skeletons in your closet!
Those are a lot of wishes but they are followed up by moments I would not trade for anything! Through being vulnerable and not being well I know that love is so important. It is very scary falling in love and knowing that at anytime this could get to be too much but I would not trade that love in for anything. It is honest, true and changes your life. For me the sky is not just blue but so many shades of blue! In the morning the sky has a yellow hue added to the blue as the sun creeps up and pushes the moon away. In the middle of the day the blue is so crisp I can feel it when I breathe and at night it trails away in a stream of reds and pinks. I never really looked at the sky before but now I can't stop staring at it!
The ability to love, be loved and to be compassionate to others and to accept compassion is a gift you have to choose for yourself and it is a selfless gift you have to choose to give others. You have to believe you are worth loving and no matter what is going on in the inside you still are worth belonging. There is no time for woe is me in this life, instead I am going to be the kid in the front of the line waving back and forth, jumping up and down and shouting.......PICK ME, PICK ME, I AM READY!!!!!
https://www.wepay.com/donations/danica-s-doctor-delima
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