I was directed the the Erdheim Chester Disease Global Alliance web page by the Dr. and my wife. It has been a big help! They do a weekly blog where a bunch of people with the disease or caregivers for people with the disease chat about all types of things. They have been very friendly but the funny thing is every week I'm reading about people who had the disease and are no longer with us.
So tomorrow I take this journey...
 |
| Floral Park, NY - Baltimore, MD |
It's only 205 miles, but this trip is going to change my life. I can feel it and I must admit I am approaching it with a sense of dread. On Monday I will have a treatment plan and this whole rare disease thing will become very real, until now it has sort of been surreal.
I guess its time for the dream to end and reality to begin.
Brad, I've been poking around your blog. I finally realized that reading from the bottom up put things in chrono order, so that helped. I'm trying to get a sense for how this disease is being within your body. Why it's rare. Why it is dreadful. What story is this particular dis-ease sharing? Did you write about this anywhere?
ReplyDeleteIt's distressing to see that researching is depressing and that you feel you're leaving a dream for what you dread will be reality... I guess somewhere inside I'm looking to relate to your comments so they are real for me.
Linda, I think that someday we will find that disease's related to the auto immune system are quite common. This strain of diseases that uses histocytes to attack the body is rare because it is hard to diagnose and rarely looked for by doctors. I hope that as testing improves more people will find answers to their chronic health problems earlier.
ReplyDeleteAs for relating...I don't know. I don't think I really understood or could relate to people who had chronic or serious health problems until I had my own. Perhaps its the same concept as child birth...unless you've given birth you'll never understand it. I hope I'm wrong though.