When I was little my mom always said to me that life was a journey, and that the road was more important than the destination.
Inè has asked me to talk a little to you about my road. I have pondered how to share this as there have been so many bumps and lumps on this road, but Mondays destination was a good stop.... I was officially declared in remission. Next week I may not be, but this week's destination is what we are going to celebrate today. In 2001 I woke up one morning and could not get out of bed. I had been in an bad relationship, recently lost my mother and grandmother, had 2 other traumas I would rather not go into, and just re learned to walk after breaking my neck, back and pelvis in a car accident. I thought I had come so far, but something was gripping me with pain. Mornings I had to be carried to a bath full of hot water to ease the pain before I could move. The specialist called it Rheumatoid Arthritis. I was not sure what it was, but he said it was an auto - immune disease. The recent trauma had confused my body and my body now did not know what was good cells and what was bad cells, so it attacked it all. My mind searched my data base for any links and found a few.
My dad had an auto - immune disease. He had Spinal Muscular Atrophy. His sister died of Multiple Sclerosis before I was born. His mom had Cancer. My mom had RA. I was joining the dots. I came from a long line of fighters. My dad was my biggest hero. He fought Spinal Muscular Atrophy from the time I was 7. I remembered his diagnosis. He was such a strong man. In my mind I was ready to fight this. I was also a warrior, and proud to be. I was 26, a ballroom dancer, a grade 1 teacher, I loved outdoors, played sports (not too well I might add), painted, played a few musical instruments... and thought I could beat anything that life brought my way. I was a fighter, my dad taught me to be. I had no idea what this road meant, but I could beat it. And so my journey began. I believed in a holistic approach so sought advice from a homeopath. In my mind RA was a joint disease so with good food and correct exercise we could do this. The professor in charge of my case strongly disagreed. He explained that RA is an old person's disease. Usually people are diagnosed with it at about 40 to 50 years of age. They have 20 odd years till they are disabled, but at 60 or 70 one is not needed to be as mobile as at 20, so it's not such a problem. At this stage I was early 20's. By 40 I would still need to be mobile. We needed to attack this with everything we had, because if we didn't i would be disabled at 40. With this information I decided to take the medical route. My daily cocktails of medication continually increased as did my joint deformation. My liver function tests as well as infection tests became monthly duties. The pain and deformity only increased. I was placed on Methotrexate. This drug is very effective with RA, but is a form of Chemotherapy. So began the hair loss and nausea. I continually had sores in my mouth and my immune system was so weak that in one year it was quite normal for me to have bronchitis or flu couple of times. I picked up any germ going around and took months to overcome it. But emotionally I was still strong. I was a fighter. My life became a lesson on how to say goodbye to the things I love.
Thankfully I had an amazing partner that taught me that whenever a door closes another one is waiting to be opened. I tried to look at it in a way that most people only get one or two things in life to try. I get to experiment with many. My life became a juggle between pain, braces, medication and doctors, and started filling up with different "aids" helping me to open things and close things, walk with ease, fasten buttons etc. I called them my toys and life was still good. In 2013 I got the news that the Methotrexate was not working anymore. There was a new drug on the market that I could try. It was a biological drug. I could be a part of the clinical trial, and when it became available, I could start using it. I was excited. I was going to make a difference in medicine. Then came the news.... when it became available it would cost me R12 000 a month. I stopped. How could any medication cost R12 000 rand a month? It would not cure me? I had to keep taking it? In the end I decided to try the drug. This was a turning point in my life. It really worked. I was safe for another 2 years as in a clinical trial one gets the medication free of charge. I would fight for a better position at work and afford a better medical aid, and all would be fine. By this time I was on a wheat free, dairy free, sugar free diet in order to keep my acid levels down, and on a good exercise programme. All would be okay. It was not. After 2 years of very good treatment it was up to the medical aid to take over. I had the better position at work, and the clinical trial was over. But my medical aid refused to pay..my levels were too low now. I could not afford the medication alone. My mind went back to the days of braces on my hands, arms and feet. The fatigue that no one warns you about. The weight gain due to the old meds, and worst of all the knowledge of the pain I was going back to. I was afraid. I had been off the biological drugs a month and already my feet had regressed so much that I had broken bones with normal walking. My fingers were needing my old braces. All was not well. The psychiatrist recommended I should start planning my future as I was going downhill fast.
This is where Inè entered my life. We had been friends a few years and we walked the path of healthy eating together. We both loved to be creative and I admired her energy and strength of character. We had spoken quite a bit of the new discoveries she had made with regards to nutrition, but I was already eating wheat free, dairy free, sugar free, and the aim of my medication was to distroy my immune system, not to build it up. This was her focus. I admired her but this was not for me. The night I found out about the regression and the fact I would not be allowed the medication I was staying at her house for treatment. We chatted at length about the pro's and con's of building my immune system, and decided in the end, I had nothing to lose. I had tried everything else. I had fought every way I was told, so let's break the rules and see what happens. We started building my immune system. Now this goes against everything I had been told to do for the past years. We added healthy fats into my diet. I had been told by my previous coach to do this but it goes against everything we are brainwashed into thinking, and considering I was always fighting the cortisone fat, this was the most difficult mindset to change. My body needed the good fats to feed my joints and my skin. I learned that my body could only perform as well as the fuel i give it. My body could only be "driven" by petrol or diesel. (High carb/low fat diet; or low carb/high fat diet). And the way that our wheat has been adapted over the years I could not bring myself to put that in my mouth anymore. Carbs became the enemy, and fats my friend. I learned the distruction sugar was doing to my body, and realised that even that little spoon every now and again in my coffee, or breath mint after a meal was distroying my ability to fight RA. Sugar became my enemy. There would be no compromise on this one. Lastly but certainly not least I started to use natural pro - biotics. People with RA struggle to eliminate the toxins from their bodies. By adding natural pro - biotics to my diet I was able to have a healthy colon. My medical aid came through for me in the end and I am on the biologics but I have no doubt that the feul I have learned to fill my tank with has built good building blocks in my body.
Since last November I have had only a normal winter flu episode that did not carry on for months on end, no pneumonia this year. My joints are starting to straighten and I have even started to play my piano again and paint. I feel as though I have been given a second chance at life. That fatigue that only one with an auto - immune disease can truly understand only occurs now on a bad day. I still have RA and still take my medication. But whereas in the past I took my medication and I was regressing. I feel now that I am giving my body the feul it needs to run smoothly again. If I was to say, even last year, that I would be painting again, or playing music, I would have told you that you were lying. It just took someone to care, to look at me and care enough to educate me.
I sat many an evening learning about my body, my new eating plan. I moved from fear to excitement to a need to share. A need to give hope, cause someone shared hope and time with me. This is not supposed to be a thank you letter, but I needed to say... Thank you for investing in my life. Your payment is my quality of life.
There are not enough words to express such thanks.