Living well with lupus

I am a lupus survivor named Sue. For the last nine years, I have been on medical leave from my job as a financial manager with the provincial government in Vancouver, Canada. I am enjoying my life and I feel very fortunate to be as healthy as I am.

My story is an interesting one because I have a very rare form of lupus called  CNS or NP lupus which affects my brain. Unfortunately, it took many years to diagnose and treat my disease so I have been left with some cognitive problems. A lot of the time, it is not apparent that I have language and concentration problems although I tend to jump around a lot. However, mental fatigue can affect me at the drop of a hat and my mood affects my motivation. (I am on the end of the scale for procrastinators). Fortunately, with much patience, I can still communicate relatively well in writing.

My purpose in writing this ongoing blog is to share my vast knowledge and experiences with lupus. I have had the privilege of sharing stories with members of lupus support groups and I have been a board member of a dynamic lupus society for years. During my time with the BC Lupus Society I have had the privilege to attend lectures given by some of the most prominent lupus doctors in the world.  Luckily, I have had access to excellent doctors and lupus researchers to discuss many facets of lupus. Because I expect to be able to understand things, I am very persistent in getting answers.

On this blog, I am going to provide tips about living well with lupus from a patient's perspective. It is my intention to share information about many aspects of lupus : research, drugs, tests, symptoms, support groups, diagnosis delays, sleep problems, disability claims, and and many other topics.

In my next blog, I will talk about a getting a lupus diagnosis. There is a lot I can say about it after seeing twenty doctors (and many of them specialists) and wasting several years. I will write me next blog when I return next week.