It can be quite a challenge having a vision, a dream when it doesn`t follow the mainstream norms and ideas. When it is said to be impossible or simply crazy. Breaking free from common beliefs takes boldness and courage, but most of all it takes a large dose of craziness. The good kind.
The majority of people believing in something doesn`t make it true.
Even though no one has done it before you, doesn't mean it cannot be done.
No matter how long the journey or how difficult it looks, the desired outcome is still within reach.
For those who break free and challenge what is currently accepted and "normalized".
My own craziness led me to my passion, my purpose, and my mission.
Although the road has been more than challenging, scary as shit, and yes downright difficult, it has been a healing experience beyond my imagination:
"I am at Haugesund Sanitetsforenings Rheumatology Hospital. 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 notice that the surgery units fill up a large part of the hospital. These people do a lot of surgery! Maybe that is the way that they fix people like me?
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 keep me here. Me and my sleepover bag, together with a book and a cellphone, are in on this together. My lap is filled with papers, a lot 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. No doors are opening or closing, it feels like someone is dying, it is so quiet. 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? They know how sick I am? 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. That cannot be a good thing. I am still freezing. It is hard to walk, and I am happy to see a chair.
"Please sit," she says. She doesn`t have to tell me twice. 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." She is not taking her eyes off my paperwork while she speaks. 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 is the prognosis?" I stutter. "When will I be able to get back to my life?" This is what I have come here to find out. No one has been able to help me figure out what is going on in my body, except giving me several heavy diagnoses. I am relying on this woman to help me. Maybe she is the one, that can get me back to my life. She now has a diagnosis, so what is the plan?
"You have a serious autoimmune condition and will never get well again". She says.
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!"
I am in shock. I know that I have been sent here because I need some serious fixing, but she's talking about the rest of my life? This woman in a white coat who is not looking at my face is telling me I will never get well again. This makes me feel sick to my stomach. 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 cannot be a good thing. Right away? My cells are shrinking. They are screaming at me; "No, no, no!"
"We will keep you here for two weeks. We will make sure you have everything you need before you leave. Get settled in and relax. Don't think so much. Having RA is not that bad at all, in fact, it is not much of a setback. The medication is 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 also thinking that something is very off with this scenario.
"Thank you, can I lie down now?" This is what comes out of my mouth, as I struggle to get up from the chair. The woman looks at me for the first time and says: "Sure, think of this as a vacation. Relax and enjoy your stay."
I am lying in bed later that first day, reading my book, waiting for the IV nurse to hook me up with real trouble. This is a 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 lives.
She did not ask me what my life looked like, this woman. How was my diet? Did I have stress in my life? Did I have someone with me? She asked me nothing of the sort. It feels like it matters, but I am not sure, I am drained and alone. I feel very alone for the first time since I can remember.
I have heard about Prednisone, and I do not like what I have been hearing. People were getting what is labeled as a moon face, where the whole face swells up, and makes you look unfamiliar and unhealthy. I feel overwhelmed, and I let the nurse do what she came to do. 0.5 liters of Prednisone, into my veins. I lie still, hooked up for a few hours, while I get more and more hyper inside. The inflamed fingers seem to have gotten a little bit better, but my whole body is shaking. I can't go to the toilet. My body is not giving up the urine. My kidneys cannot do their job. I need to talk to the doctor again. She doesn`t like this, and she aborts the next round of Prednisone. My body cannot take it. I feel alone. What now? How will I get well without this medicine?
In the hallway, they are serving waffles and red juice. Coffee is on display around the clock, and I notice the other patients are drinking coffee at all hours My roommates are walking from one treatment to another, all in need of special aids, and all constantly complaining about their terrible situation.
I have been given a schedule, appointments and tests. I enter the room of my 11.00 o`clock special aids appointment. I had help from a nurse this morning, getting dressed.
I can't dress myself.
I am told to squeeze a device, so they can read the strength of my fists. Not good news. I need a special knife, a can opener, and wrist supports. Well, I know that I cannot do certain things around the house anymore, so I am welcoming the gesture. With the wrist supports, I am told I can do laundry again, and drive my shift stick with less pain. The lovely woman that is testing me, is filling out some forms for me, so that I can get further help in my home town. I will need it. "You will need more and more help, so do not be afraid to ask for anything," she says. "You will get used to it. It might feel strange at first, but you will get used to having different tools and aids to get through your day. You better start planning for a wheelchair. Is your house up to code?"
Well, I am not much of an ask for help person. I am the give help person. I am the helper, not the one that needs anything. What will happen when the one that is usually helping and organizing needs the help? A scary thought.
The eating part is interesting here. I have raised two children at this point, and even I, who do not at all see myself as a healthy eater, have a reaction to what is being served. The food is barely fit for a healthy person, in my view, and most certainly not for a sick one. I am no expert, not even close, but something feels very off when you are being served nothing but dairy, breads, sugars, and the likes. I can barely see any cooked vegetables. I will find out much later how hard it is to stay in a hospital when you are a healthy eater. It is next to impossible. Healthy eating and health should go together, and health and hospitals should go together.
They really do not know that food and health has a connection, that food and health go together like hand and glove. I have no idea myself, but this, all drugs and animal fats, sugars and additives, stirs a reaction within me. This is not right. I am not heading down a healing path on this train. I just have no idea where to change tracks. I don`t know what to do differently, as strange as it might sound.
The next appointment with the good doctor woman is not as cheerful on her part. I am now a complicated patient. "What medications are you on?" She is still not looking at my face.
"Vioxx, Nexium, Furix,", I am listing them all. The first two are a go, but the Furix needs to be stopped. I have no idea that Vioxx is going to be taken off the market a few years later. It has caused too many deaths by heart attacks. It seems there are a certain number of deaths that are within an acceptable range. Vioxx is an NSAID by the way, a non-steroid anti-inflammatory drug.
I am listening to this doctor speaking, and all I hear is drugs and special aids. I am running a business, I have a life, is she not getting that? Is she not seeing my pain, my fear and my frustration? I am trying to listen. "I am adding Methotrexate and Prednisone," she mumbles. "Prednisone? That is the one that was causing my kidneys to go on strike! I did not pee, remember?" I am fully alert now. I try to calm down, before I jump in with an opposition. I want to understand what is going on within my body. I need her to explain to me what she has planned, to help me get my life back. "Please explain to me, what is the plan Doc?" I am getting frustrated.
"Do not worry at all. There is nothing to be alarmed about. Your kidneys are fine, and the medications do wonders for so many. You will lead a normal life."
A normal life? What about my business, my spinning and aerobics classes? What about all the joints that I just saw, the ones you use to replace the deteriorated ones, in people like me? What about the many operating wards, all the surgeons on call? I am sure they would not be here if all your patients were leading so-called "normal" lives? I am also wondering what normal is by her standards. I have an active life, I have two children to take care of, I have a social life, a hectic one. I do not have time to slow down. I am not made to be sick, I am full of life and have things to do. What kind of normal life will I be able to continue? My head is spinning. My mouth is silent but my inner voice is loud.
"I am not doing Methotrexate," I hear myself saying. "It cannot be a good idea to kill my cells! Methotrexate is a chemo drug, and I absolutely need my cells to be alive." The doctor looks at me, not happy. Another doctor enters the room.
I am outnumbered.
I am sitting in front of two strangers of authority, telling me to do as I am told. I am crying now. Tears are streaming down my cheeks. I am not big crier, but I am crying. In front of two strangers, at the age of 39, I am crying. I can´t believe this. I am crying and they are raising their voices at me? I am getting a lecture on their ability to medicate me, and that I better listen, or else... I need to do the chemo drug, even though it makes me nauseated and itchy all over my body. I know I am not getting anywhere, and all I say is "ok".
I know I cannot kill my cells, I just can`t, but that will be between me, and me.
And so, the rest of the journey began.
The fight for my life.
The journey when I become the crazy one for not following those before me on the road to a permanent Hell.
The journey where I become bedridden for years looking for the solution to health. Studying, searching, experimenting and learning.
The journey that has a happy ending many years later. When the crazy one ends up being the passionate life-enthusiast we are all meant to be.
Hilde, 52 years of age,
Living her dream life, thriving, helping others do the same.
In a crazy good way.
xoxo