My First Post

Why Blog?

There is nothing like being diagnosed with a terminal disease (amyloidosis) to foster reflection. Although we are all dying all the time, or we could be hit by a truck at any moment, a diagnosis with a deadly disease with no cure really produces immediate change. It is true what people say, that there is an increased appreciation for living and a new found joy in simple things. It is also true that coping with one’s mortality gives you a new perspective about what is important, and what you want to spend time doing.

Self reflection is big on my list. I am reading Echart Tolle, A New Earth... and taking A New Earth class on Oprah.com. I still must have some ego issues because I am a little embarrassed to admit that I am taking a class through Oprah.com. Regardless, Tolle is helping me be comfortable with Being, and making some concepts that I had already been exposed to more real. I had always struggled with the Buddist concept of Ego. Tolle makes this concept accessible to me, and I am more able to see when I am motivated by ego.

With all the reflection I’m doing, my emails to friends were getting fairly verbose. Now I will try to put my thoughts on the blog instead of in emails. That should reduce the rambling and provide an avenue for sharing my thoughts. I will still email friends but focus more on my relationship with them, than on my transformation.

I also am learning a lot about this disease, and complementary therapies that might help. Since there is no cure, and since this will kill me if left alone, I am motivated to try other options (in consultation with my doctor). The disease produces the amyloid proteins. There are certain enzymes and antioxidants that can help rid the body of excess proteins. I am hoping to make this site a repository for this information so that others can easily find it. I’ve just started this, and with all things it is a process. There are also additional resources for people living with the disease and for their caregivers that I will also reference.

I also hope to raise awareness about Amyloidosis. I will share my story in a future post. This disease is very hard to diagnose, and doctors still falsely believe that there is no treatment. We need to raise the awareness about the characteristics of the disease and the treatment options. This will help save lives. If it weren’t for one of my doctors, I would be diagnosed with heart failure only today, have no idea why it was getting worse, and probably die without ever having a correct diagnosis or the opportunity to treat the real problem.

How to Use this Site

Blogs are like diaries, in that entries are arranged in chronological order. The most current is first, followed by others in reverse order as you scroll down. As a result, finding specific information by topic may not be immediately clear. Blogs use labels to help solve this problem. Each entry will have one or more labels (topics) associated with it. For example, if you are interested in alternative therapies for amyloidosis you will look to the right and click on the label “complementary therapies” and all the posts that have to do with complementary or alternative therapies for amyloidosis will be loaded on one page. As you scroll down, you will see all the posts in date order, with the most current related post at the top of the web page.

I hope you find this blog worth reading.

MB