Hello to you and thank you for taking the time to read about my journey on The M Word.
My blog was born as a result of my diagnosis of an incurable, life threatening disease called Vasculitis, when I was 18. Now 35, I know that what I thought I knew then, is very different to what I definitely know now and it is not something I could keep to myself. I felt I had a duty to share and this has lead me to eventually tell my story, here with you today.
If I’m honest, I like to bury my illness and what it has done to me, away deep in my mind and not think about it very much. So my story of Vasculitis starts here, where I let you in on my personal struggles and truth about living with chronic inflammation and what it has done to me, both mentally and physically. But there is a silver lining in every cloud as they say.........
........ I was 18, when I noticed a severe back pain, which would not go away and was only increasing in pain. Over the next couple of weeks, I deteriorated to coughing up blood, bleeding from my ears, nose and gums, with severe facial and back pain. At this point my GP recognised my symptoms as being serious and I was admitted to my local hospital.
In the next week, I deteriorated to the point my inflammation levels were off the scale, getting worse and my parents were given the news that I was unlikely to survive without quick diagnosis.
Thankfully, my guardian angel sent me a lifeline. A doctor, who was at that time visiting the hospital and after reading my notes, then diagnosed me properly with Wegeners Granulomatosis Vasculitis. I was to learn that this was a rare, incurable disease, and meant that my immune system was over reactive and was attacking my own body, causing abnormal and damaging amount of inflammation in the body.
The disease at this point, had killed the top third of my left lung and had badly damaged my nose, ears and gums by weakening the cartilage and function of these organs.
However, due to my very lucky early diagnosis, my story gets a little better, and I was immediately given very strong immune-suppressants and a very high dose of steroids. This started to combat the inflammation quite quickly and over the next 6 weeks, I was able to recover enough to go home.
Over the next 10 years, I relapsed on average every 18 months. Unfortunately, I’m described as a chronic relapser, which means I have all sorts of drugs which would hopefully control my over reactive immune system, but failed to do so. Due to the grumbling effect of the disease, my airways began to close in my nose and my bridge became close to collapse. In 2009 I had to have an operation to support the bridge and open up the airways to avoid collapse of the nose. My “nose job” as my friends called it!
The road of Vasculitis is never a smooth one and is always unpredictable. This became apparent when I turned 30. My doctor raised concerns with the situation of the fungal infection of my left lung He advised me that he thought my left lung was now completely not functioning and was in fact dead and I would need to have it removed, in order to remove the fungal infection and stop it from affecting another part of my body. The surgeon confirmed my doctor’s opinion and he said that it was best to remove it and perform a Pneumonectomy ASAP. Six weeks later, I was minus a lung and recovering from the op. My friends thought it might make me a bit quieter, no such luck I’m afraid!
The timing of these things is never ideal, and I had already sanctioned the Love Organics Company website and this was sat in the wings waiting to go live. I was chomping at the bit, so with help from my husband, team and continuous support from friends and family, the site went live 8 weeks after my op, hooray!
Throughout this story, I was constantly learning about inflammatory triggers and how the wrong diet, lifestyle and choice of products could affect one’s body. Even though, I do still need drugs to control my disease. My understanding and knowledge of avoiding anything that may trigger my inflammatory disease, has helped me to control my wellbeing. I’m the best I have ever been, with my illness flare ups becoming less common!
So now we move on to The M Word, which is my collection of positive tips I can make use of, by educating those that want to be helped. My awareness now of all things inflammatory and toxic, I now wish to pass onto you as I want to make sure your journey is a happy & healthy one.........................................................
But, I also get something from this. I’m fortunate The M Word and The Love Organics Company give me a sense of purpose in helping others by keeping them in the know, whilst healing me every day, giving me a focus and a love for life.......................................
As my mother has always taught me, ”life is precious”.