"I am at Haugesund Sanitetsforenings Revmatisme sykehus. A very old hospital for Rheumatic patients, consisting of six floors. The hospital deals with rheumatic patients like me. That is all that they do. Some are here for examinations, some are staying longer for rehabilitation, and some are here to have surgery. I am noticing that the surgery units fill up a large part of the hospital.
I drove myself here. It was a lonely drive. My thoughts have been drifting between hope, curiosity and frustration. I have no idea what to expect, and I am not sure how long they are going to hold me here. My stay-over gear is with me, together with a book, and a cellphone. I have my lap filled with papers, a large quantity of forms and questionnaires. I am looking for a pen, noticing that it is very quiet here. Scary quiet. The reception area is behind glass, and I am the only one here. I am sitting at the end of a long hallway, leading to a number of doors. Some of the chairs are unnaturally high, like a crossing between a bar stool and a chair. The pamphlets and brochures filling the table next to me are all about how to live with a debilitating chronic disease, and how to manage a joint replacement. I am freezing. It must be lunchtime or something. It is so quiet and cold. As I am answering questions about my health, my work, do I need help, and do I need special aids, my hands are in severe pain. Next question: "Are you able to write this yourself?" Am I not expected to be able to write? Being here scares me.
A woman walks towards me. Dressed like a doctor, she is calling my name. I feel dizzy. I never did like hospitals. We are walking past a large display of metal joints. What a cheerful way to decorate, is my thought, as I follow this woman to her office. What would one accomplish by using joint replacements as decorations? Maybe it is the interior architect speaking, but seriously. It is hard to walk, and I am happy to be able to sit. She examines me, my fingers, my toes, my knees, reads some of the forms and looks at me," You will have a meeting with the special aids department tomorrow. They will provide you with what you need". I cannot think of any special aids that I will need, but that's the least of my worries at this point.
What can this woman tell me about getting well and back to work? What are the prognosis? That is what I have come here to find out. No one could help me figure out what was going on in my body, and now I was relying on this woman to help me. Maybe she was the one, that could get me back to my life. She now had a diagnosis, so what was the plan?
"You have a serious autoimmune condition and will never get well again."
This is what she tells me. Unaffected, she looks at me and tells me. "You will have to be medicated for the rest of your life, and will need more aids to take care of yourself as the years go by", she continues. "Do NOT worry, we have great surgeons today, and a number of medications we can put you on to delay the deformation of your joints. There are some new drugs that are very promising. You are young, and you need to get on them right away!" She is loosely telling me that she has never seen extreme blood counts like mine, and that she has never seen someone come in with such swollen hands. She calls on a nurse to give me Prednisone intravenously right away. This cannot be good. This can not be a good thing. Right away? My cells are shrinking. They are screaming at me, saying "no, no, no"!
I am then being told that the stay will be for nearly two weeks, and that everything will be sorted out in time. All I have to do is to relax, having RA is not that bad at all, in fact, it is not much of a setback. The medications are fabulous, and the help is fantastic. Cheer up and enjoy the stay! The doctor tells me this word by word. I am just looking at her, thinking I will never be spinning, running, skiing or walking in my high heels, ever again. I am laying in bed later that first day, reading my book, waiting for the IV nurse to hook me up with real trouble. This is the book that will follow me for many years to come. "You can heal your life", by Louise Hay. While I am holding on to my book, I am also holding on to my inner voice that is telling me:
"Something is not right. Your body can heal. I can heal, I AM healed!" I am telling myself this over and over and over again.
I have never seen myself as a spiritual person, even though I have always been open minded, knowing that there was more going on that I could perceive. Tears are running down my cheeks, and for the first time in a very long time, I say a prayer, "Please, dear God, tell me what to do!" The tears are not only for myself, but for all those suffering like this, every single day. Those who feel sick and lost, and in a system where no one is concerned with how they are feeling, or what is going on in their life. No one asked me what my life looked like. How was my diet? Did I have stress in my life? Did I have someone with me? I am alone here, do they know?
"I am looking at this enormous barrel, the metal kind that some use to burn garden leaves in. I remember it being red, and all my needles, all the syringes, are in that barrel. They are sticking up, every shot I ever did, all put into that one barrel. It is filled to the rind! I keep staring at it as it explodes. The whole thing blows up, and I wake up in a state of shock! It was scary real, I could smell the fire, the smoke."
That whole day I felt overwhelmed. I kept throwing up between classes, but it was like it did not matter anymore. Nothing mattered. Not me, not what I was doing, not my body, and not my life. I drove home early. I laid down on the living room sofa, and that was that. I just laid there. I was done. This was it. I had made up my mind. This had to stop, right now, right this very minute. I was done.
No more. No more anything. No more feeling like I was going to die, and not knowing how to get help. No more medications, that only kept making me worse. No more doing what I did not want to do. No more acting like I was fine, when I was not. No more trying to look great, when I felt like crap. No more being afraid of anything. No more NOT listening to ME and my body No more bull shit. I was done!
My husband found me on the sofa after work. I was still laying in the same position. When I sat up, this is what I told him:
"I am laying down now, and I will lay here until one of two things happen. Either I get healthy, or I die. I do not care which, as long as it is one of them. No more medications, I AM DONE! THIS, I cannot do anymore. THIS is not living. I am done!"
At 42, my body did not want to keep signaling me anymore. My whole being went on strike to save my life. I had been called.