When I was diagnosed with Lupus in 2003 I was told I had a mild case and it would be easily managed with a low dose of medication. I was put on a daily dose of 80mg cortisone, not exactly a low dose for someone who is only 1.58m and weighed around 45kgs. It totally blew me up not to mention the emotional effects the drug had on me. I was down and depressed all the time, snapped at everything and everyone, I just wasn’t myself. Physically and emotionally. Fortunately after a couple of months the inflammation went down and I could lower the daily dose gradually to 5mg a day. But that didn’t last very long. The inflammation came back, this time worse. Because I absolutely didn’t want to start the cortisone again I pretended everything was fine and kept it up for months until I weighed 38kgs and couldn’t really pretend or hide anything anymore.
But I was still determined to find a better treatment than the cortisone. And I did. I found a clinic in Germany that used a more functional approach. A far less invasive treatment than the conventional therapy. The first time I walked in the doctors office, barely able to stand on my feet, he told me I was just in time and except for his wife this was the worse case he had ever seen. I was so sick I didn’t even think about whether my insurance would cover the costs or not and started the treatment right away. I needed weekly treatments at that time so I traveled to Dusseldorf, together with my mom, and stayed there for 3 days every week while getting treated. When we were able to control the inflammation I only needed treatment once a week and eventually once a month. I also got everything covered my by insurance after it first being denied. I had to fight for my rights for a better treatment but I didn’t mind. This therapy was working without all the horrible side effects of the cortisone.
And then one morning in 2007 I was suddenly paralysed..
My legs had been restless for a while but I didn’t really know what to make of it. I never had those symptoms before and didn’t recognise them as a lupus flare. Usually my flares started with flew like symptoms that would become worse and worse. But this time was different. I had a tingling feeling in my legs and arms, which I kinda didn’t take seriously and blamed winter and Raynaud”s disease for it. But one morning in March 2007, a few months before my wedding, I wanted to get up out of bed and collapsed. I just fell to the ground and couldn’t stand up anymore. There was no feeling or strength in my legs or arms. I lied on the ground for a little while, not knowing what to do before calling my then husband to come and help me. I contacted my doctor in Germany and he told me to immediately go to the ER. Which I did only to be sent home again after waiting for hours. Because I wasn’t referred by a doctor and I was being treated in Germany, they couldn’t help me. So I contacted my general physician in the Netherlands and I was referred to the hospital the next day.
Somehow from that moment on it all went downhill very fast. I was in and out of the hospital constantly with major complications and all therapies failed to work and only seemed to make the inflammation worse. My whole body was under attack, my skin, joints, nerves, muscles, eyes, lungs, heart and stomach were all inflamed. I was paralysed and in a wheelchair, I needed help with everything, from getting out of bed in the morning, to going back to bed at night. The doctors were running out of options meanwhile I was running out of time. Deep down inside I knew I was dying and nobody had any answers. I was tired and weak from the inflammation that was burning inside my body like a fire and from all the drugs. I was ready to give up. I just couldn’t do it anymore, all treatments were failing, there was hardly any reason to go on just to be disappointed all over again. And again. And Again.
But I overheard my doctors discussing if I could be a candidate for a trial treatment for Lupus patients. In other words they discussed if A) I was sick enough and B) If they really were out of all options..They did really try everything.. While I was listening to my doctors discussing if they really tried everything and if I was sick enough to get this trial chemotherapy, I wondered what gave them the right or power to decide whether I should get this treatment or not. Shouldn’t that be my own choice? And if there’s a therapy that we apparently haven’t tried yet, that might work, what’s there to discuss anyway! The inflammation needed to be stopped, my life was in danger and nothing else was working. Seems like a pretty easy decision to me. So I decided to fight for my life one last time and raised hell to get in that trial treatment. Obviously I got in or I wouldn’t be writing this. It worked. The inflammation went down, my lupus stabilised and we were able to control the disease for 5 years. But then suddenly after 5 years the doctors decided I needed to start cortisone again. Cortisone that failed to work over and over again before. When I asked to pay for the chemotherapy myself I was told that that’s not the way it works…
Here I was again at that point in my life where I just couldn’t comprehend the fact that someone else had the power to decide whether I live or not. And in that one moment I realised that this was not how I want to live my life. I got up and walked out of my doctors office and never looked back.
And guess what. It’s 2017, 4 years since the day that I walked out of the hospital, I am still alive and I feel better than ever.
I learned how to control my lupus, that nearly killed me more than once, naturally without any drugs whatsoever but through very simple lifestyle changes. I never thought I would make 40 but with just one more year to go it looks like I might actually make it after all. And I never saw the inside of a hospital again. And don’t plan to.
Do you want to know what these lifestyle changes are that helped me? There’s nothing to lose, no horrible side effects and everything to gain.
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