Re: caretakes/ advocates

[Guest guest]

We love the Gilmore Girls to escape - (not a book - but still a nice escape). We went through all of season 7 during the last two days of spring break - with what little make-up work she could manage sprinkled in.I'm sorry life is so hard for you right now - I completely understand wanting someone to take over, and not having anyone who can do that. No one else in my family understands medical stuff, so when I have my mystery maladies I just have to shove through it because no one else can sort through it for me. (Fortunately, the mystery maladies I have tend to be short lived, but unusual so the docs don't know what is going on and don't have solutions). Everyone should have a doctor-mom and advocate! (I've got an advocate - sort of a pit bull kind of advocate

- but useless at figuring out medical stuff.)Can you enlist your husband and kids to do the things they are good at so you have more energy to the things no one else can do for you? I do all the medical research & communicating to doctors in our family (which I'm good at) - but my spouse does all the phone calls to whoever needs to be called (which I can do, but I hate)., Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Friday, April 3, 2009 10:29:12 PMSubject: caretakes/ advocates

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Any reading material that could work to entertain and and help us escape our disease is good in my "book."

I am very envious of your daughter and others in this group who have such loving and passionate advocates to fight for them. I have great kids and a kind husband, but there is no one else to figure out which dr to see, which transplant center to go to, to just take over when I don't have anything left. OK, too much self pity. Take care, Cheryl ID, 50, PSC/UC/RPC/ mysterious kidney problem