Re-reading from the Beginning

I spent a bit of time on Sunday morning re-reading the first two years of this blog. Small details had been forgotten. Memories returned of working very hard to use the perfect words and to try to keep them short. I also realized how valuable my experiences could be for someone newly diagnosed. Why did I suddenly re-read them? One of my mom's doctors took an interest and recently emailed her that she was reading the blog from the beginning. A doctor who has a family and limited time. I am so touched. My hope is that she passes the blog information to the pulmonary group and maybe they, too, will pass it to their patients.

My goal is still to speak to groups of people. I especially like to speak to groups of doctors as it is there that I think I can bring a change in their perception of the possibilities of diet and exercise for ILD patients. They are the gatekeepers of that information and also the cheerleaders. By prescribing and encouraging pulmonary rehab, they are offering a better quality of life and lots of social and emotional support. Win/win.

After we met with the head of the patient advisory board on Friday, I got a call from Michael later that afternoon. Apparently, talking with her about our experiences dealing with my diagnosis, especially the first four years, brought up a lot of emotions. He went back to work and had to take some time to gather himself. On Saturday, we talked again about how helpless we felt and, with the two lawsuits, we could not even think about planning for our future. Our lives were on hold for those four years until the Worker's Comp suit was settled. We were unable to do any work on the house because it would appear that we were covering up a mold problem. It seriously needed interior paint. After it was settled, we arranged for painters to paint the entire house while we took a long road trip. Everything bit of furniture was piled into the family room, kitchen and garage. It was tough to arrive back home, rested and happy, only to have to spend almost a week to put back every stick of furniture and all the clothing back into its place. But, it was then that we began to plan and live.

As you know, I am a huge supporter of medical research. Yesterday, I did the initial intake for a brain research program. It will be only from home and involved brain games over time. They want your input for years. If you are interested it helping or want more information, here is their URL: http://www.brainhealthregistry.org/