Family

It is not just one person that CM affects. It's the family, the whole family. I have lost touch with my brother and his family, my in laws and their children. Horrible! I have so much to make up, not bad stuff, just time!

My brain was so consumed with this disease and getting it treated I lost years of family activities. I didn't even see this happening. Months turned to years of disconnect. Worse yet it affected how I looked at family. I viewed everything with a little anger because I could not do the thing they could so I just ran and hid in my bedroom hoping to sleep it off. For years!

Now I want my family, all of them. Hoping they have not all moved on thinking I am some kind of snob that doesn't care.

Doctors need to know this. They need to know that by dragging out long drug treatments it can cause so much disconnect with family. They need to involve the family right from the beginning. YOU need to involve family with your care and treatment.

For the first 2 years I did everything alone. All appointments, all research. I kept every thing to myself. Because I was unsure, of what this really was. I was embarrassed because so many appointments yielded nothing but hurt and confusion from these doctors.......it's all in your head! I did not want my family to know that I was perhaps CRAZY.

When really what I should have done is empower my family to advocate for me......that I was not crazy and something was really wrong. The last 6 months I did this and got noticed and VALIDATED that YES something was wrong and treatable. Oh the time and energy I wasted.

Time and energy I have now, home recovering. This time will be spent much more wisely. Reconnecting with my lost family and friends. Reconnecting with God.