Thursday, August 26, 2010

Words to help those who are healthy...

My son and his girlfriend arrived home safely and yes....she has giardia - the backpacker's worst enemy. She looked so pale and thin, I could see why my son was so concerned for her. They made the right decision to come home early.

Tomorrow I take my daughter to her new apartment in Ann Arbor to begin her sophomore year at the University of Michigan. All parents out there know how bittersweet this is, but it's what's is supposed to happen. I will certainly miss her immensely. She's had a job as the manager of the local ice cream shop for the last 4 summers and yesterday was her last day forever. She said "my days of scoopin' are done" as she plans to remain in A2 (A-squared, the common nickname for all of us U of M alums) next summer and complete an internship. She already has a job lined up as a research assistant for the fall term. She's making the most of her world-class education.

My husband and I have a couple of trips planned and although my health is definitely on the decline, I am looking forward to our time away. We don't schedule anything physically demanding and hope to get in a great deal of relaxation time.

I have a great resource for all people with Hepatitis C and their loved ones. It's called Caring Ambassadors Hepatitis C Choices (4th Edition) and it is the most comprehensive book about Hep C I've come across. I was reading it yesterday and came across this poignant statement which struck a chord from my own personal experience:

"Many patients noted that family and friends did not believe they were physically limited by HCV as they did not appear classically 'sick.' This led to accusations that HCV was not a "real" disease, like cancer or heart failure, and that instead the patient must be pretending to be ill."

I'ts sad, isn't it? I was once a bundle of energy and juggled numerous responsibilities well. I had a full-time job, four children, a home and full life. I now spend 65% of my time lying in bed and resting. And yet, I appear to be healthy. Yet...pathetically enough, I've been accused of using my I illness to get out of things I don't want to do. If any of you knew how many times I had missed out on things I really wanted to do because I was ill; of the many evenings lying here alone, crying because I was not able to attend important events or things that I sorely wished to atted you might understand. not judge a person's disability just by how they look. I appear healthy. Actually, more healthy than normal now that I am thin and have an elevated bilirubin, which makes my skin appear a bit tan - I look like the epitome of health. But I am far from that and while I do have days in which I feel well, most days are not so good. If you know someone who has an illness, call them, send them a card or note and let them know you care. It can be a very lonely life at times and sometimes that one call, card or note of caring can lift a person's spirits just when they need it.