Sick & Tired of Being Sick & Tired

I hear a lot of other Chiarians and SM patients say that they get no sleep and the insomnia is terrible. For whatever the reason, I could sleep all day and all night and still feel tired. My pillow and heating pad have become my very best of friends.
 Aside from the fatigue, today has been a better day. This week has consisted of daily headaches but today has been just a slight pressure at the base of my skull-tolerable. I am still waiting for the surgeon to return my MRI's so I can contact a local pain management neurologist until my next scan. If the medical profession is one thing it is most certainly not fast!
I was able to register for a Walk and Roll to benefit ASAP in September. I will post the donation page soon. The walk I hosted earlier this year was for CSF. Both of these organizations do a tremendous deal for CM and SM research and studies. Without them there would be even less hope to finding a cure and I encourage you to check them out if you haven't already. I will post links below. As I said in my last post, spreading awareness has allowed me to cope with the fact that this pain may never go away and the frustration that very few people understand or even see how it affects me day to day. I have joined a handful of support groups through facebook and those people have become not only an incredible outlet but good friends. I have met others who have been through hell yet some have little to no symptoms. I have discovered strong, courageous people who have lost or are slowly losing their battle with these diseases. Every single person with these diagnosis' is different but we are all tied together with hope and compassion.
That is all for now. I am off to bed early. Here are the links I was referring to. If you are unfamiliar with Chiari and Syingo, I highly recommend you read their information pages. You can also purchase merchandise, make donations and read stories.
www.asap.org
www.csfinfo.org
Thank you again for taking the time to read. I am hoping to post more facts and maybe some photos this week. Check back!