Friday, December 2, 2011

NeuroSarcoidosis!!!

                            Warning: this is not going to be a pretty post so be prepared!

You know the old saying, "Rain, rain, go away"? Well, I changed it to "Pain, Pain, go away" but somehow it was mistakenly heard "Brain, Brain, go away"! I am writing and praying that this mistake can be cleared up and that my brain will be returned to me. Sarcoidosis is a horrible disease, but when it turns into NeuroSarcoidosis, it is truly enemy within. In the last few weeks, I have been suffering from a multitude of symptoms that are incredibly difficult to deal with. I have had constant insomnia for many decades, but now as I drift off to dream, I wake up suddenly in a state of panic!!! This can happen 5-6 times a night, so neither I nor my Hubby are getting any sleep! This has all been a surprise to me and I don't honestly know what to expect next! On top of it all, all of my doctors are at a loss. If I could get my head together for a moment and out of this inky dark brain fog, I am planning to write a book telling my Sarcoidosis story, as well as any other Sarkies who wish to join me. So if you have Sarcoidosis and would like to be included, please speak up! The purpose of my book is to tell the real Sarcoidosis story, help others that have just been diagnosed, raise awareness for Sarcoidosis, Hopefully raise funding for Sarcoidosis research, and blast the ignorant medical community!!! We must build the infrastructure so that someone newly diagnosed with Sarcoidosis does not feel alone!

Moving Slowly down the Simple Path,
Robin

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