Thursday, August 4, 2011

2 How am I going to live??

Why is it that when you are sick, you always have to prove that you are sick?
Why don't the doctors belive us when we say that something is wrong?
Who wants to be sick by choice? I have never met anyone who thinks that spending their life in pain in bed is a good life...
Isn't that what we all want?
A life surrounded by friends and family. and of course the never ending question- Is a good life two kids, a husband and a career? Or is there more ways to have a good life?
And what alternative ways are there?? I would like to now.. How do I get there?
Everything sounds so hopeless.. my future is slipping away.. And my reality is that I might have to life with this- and I don't know how I am going to get the strength to fight this battle to the day I die..


  1. Every day begins anew. It is how we choose to live that defines us. IF you surrender to the pain IT wins.
    NO I shall NOT surrender. When we saw opportunity to buy a cabin by the sea to live year round in my husband went first to view it. All our dreams were to be found in this cabin. Free standing, 50 metres from the sea, huge outside lot, hidden in woods, bottom of the mountain at the end of a rugged walking path, and no year round neighbors except one off about 350 metres away. My husband called to say NO we cannot buy due to all my illnesses and possible amputation of one of my legs in near future. He said NO because of many paramedics coming for me all the time and living in the cabin would mean they could not get me out easily. I SAID YES!!! YES TO ALL OUR DREAMS being right there. I will NOT let my pain, my bad heart, leg, or back say NO to this dream of living in this cabin. I needed to live with him outside of community of neighbors always seeing me SICK ir hearing my tormented SCREAMS AND CRYING in the night when the pain was to bad so I could not sleep. WE bought that cabin. MY HUSBAND ALINE dragged wooden beams and metal to build STAIRS so that I and paramedics could get down and up from the cabin. Now I have peace, quiet, and privacy. I can sit up at night and cry and only my husband can hear. I awake to sun and birds and the sea out my window.
    Alex....NEVER stop your dreams of marriage and kids. DO NOT SURRENDER!!! With one good man beside you, you can and should live, even with pain.
    Each day as new obstacles build walls in our way because of my health, my husband pulls out his "tools" and finds a new path around, over, under, or straight through to keep our dreams real. I KNOW YOU CAN DO THIS TOO!!! HUGS Julie Anne

  2. Thank you Julie Ann for this comment. It brought tears to my eyes.
    I felt you hit me right in the heart, and I can so relate to what you say.
    I also just want people to see me for me, not the sick me. You cant see that I am sick, and that makes it easy for people to doubt me, or not understand...
    I also would like to live in a quite place where I am not constantly reminded that I am not a part of the society right outside my door.
    I want to be able to do gardening, walking in the Forrest and just be...

    I am only 30 years old, my life should just have gotten started, at the same time I am tired of having to give up my dreams over and over and over again.. I want to find a way for me to find peace within myself..
    I am not giving up. I cant, I need to have something to keep me going.
    But how have you managed to get to this place? how did you do it?? Do you have any words of have I can get my dreams inside this box that is my reality now???

    Hugs Alex