Hello if you have arrived here you are either a patient, carer, physician or someone you know is dealing with this condition. I am glad you are here (well not glad for the circumstances but glad for the opportunity to connect) and would like to tell you a little about me and my journey and why I am passionate and excited about ‘Laughing with mr lupus’
Laughing with mr lupus is the result of my search to find coping mechanisms and strategies to deal with an often unexplainable condition. It is about the things that make up who we are. We are so much more than the condition and challenges we are experiencing, but the enormity of it all often results in who we really are being buried under its power and influence.
Please notice the small m and small l they are deliberate, as I have decided that I will not give lupus more power and precedence in my life than is absolutely necessary.
Laughing with mr lupus is not about exploring more medical research or new drugs on the market (although this information will be sign posted) it is about helping you to:
- Reclaim and redefine your identity,
- Laugh more often
- Discover a new you and ways to live a more fulfilling and productive life.
- Sharing advice, information and stories
- Create coping mechanisms and strategies.
My mission is simply to help you to smile and laugh more often and to discover who you really are and to love that person and to enjoy the journey.
I was diagnosed with lupus in 2001. Originally my diagnosis was discoid lupus as the result of a scalp biopsy but complications came and the challenges of Systemic lupus raised its ugly head. The initial journey was inconvenient rather than problematic and I skipped through life navigating my way through the challenges of depression, fatigue and inflammation and I was doing okay.
Then 2005 came, I think I am going to look at this as a defining moment for me as this is where everything fell apart (well that is how it all felt) and during the subsequent years I have learnt (the hard way) what it is like to live with a chronic condition. Amongst the things that I have had experienced are:
- Nerve damage in my legs
- 9 months chemotherapy – and some interesting side effects
- Numerous hospital stays and trips to casualty
- Body changes as a result of our dear friend Prednisolone
- High blood pressure
- Irregular heart rhythm arrhythmia
- Weight gain
- Weight loss (although not quite enough to keep me happy)
- Kikuchi – a rare disease of the lymph nodes
- Memory loss
I could continue writing the list but the purpose of me mentioning them is not to let you know what I am and have been dealing with but simply to let you know what gives me the right to believe that laughing with mr lupus can help.
But lupus is only part of my life, to find out more about me click here.
Whilst we didn’t choose lupus we can choose how we deal with it and how we live our lives as a result.
I hope you will be a frequent visitor and I look forward to connecting with you.