I had never heard of Lupus until I was personally diagnosed in March 2012. To say the least… I was overwhelmed, scared and anxious and did not know where to start.
The first few weeks were a period of complete chaos in my mind, and I started scrambling, trying to find out as much as I could about Lupus, and seeing a Rheumatologist for the first time in my life. The initial experience was incredibly overwhelming with so much information and having to make decisions about the best course of action and treatment that I should take. I am sure that the many thousands of people who are diagnosed every day with an Auto Immune Disease feel the same way.
Initially I read as much as I could on the internet and was overwhelmed by the scary stories and possible debilitation that these stories indicated, as well as a lot of various individual/sites offering unbelievable
treatments for Lupus. I realized very quickly that these were not the places to be looking and started investigating by joining legitimate health/scientific sites that gave real information regarding Lupus so that I could become more knowledgeable about this disease.
The saying that “Knowledge is Power” is never truer than when you are in a situation that affects your health, and you don’t understand anything about it.
The very first step in learning to “Live with Lupus” is understanding the disease as much as you can and understanding that this is a chronic condition, but that it can be managed and over time you can find what works for you.
I have registered with several official Lupus sites, and I have found that these gave me the best insight into what Lupus actually is and what is being done to try to treat and manage Lupus.
Throughout the following 10 years in which I have learnt to live with Lupus in a positive manner, I have experienced many ups and downs, but I found that instead of being in a space where there is constant negativity surrounding Lupus, I wanted to share the knowledge that I have gained in learning to manage my Lupus, so that others could possibly have an easier time of finding the proper information and healthy options more easily and create a more positive approach to living with Lupus.
I hope over the following blogs, that you will find the sharing of my story informative and that perhaps these experiences could help you in some small way.
Remember…. Everyone is different, so it is a personal journey for each of us, as we need to find what works for our bodies as individuals.