caretakes/ advocates

April 3, 2009

,

Isn't that the truth about the current vampire trend? Any reading material that

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

Pun intended. I'm reading How Doctors Think right now. I particularly thought of

you and all the mothers when I read the chapter entitled " A Mother's

Chanllenge. " This chapter discusses a case where a woman's daughter had an

extremely rare disease that was killing her (infant). the baby nearly died. The

hospital was the best in the field. the mother didn't feel like the drs were

correct---she knew it in her gut or from her faith. She pushed and pushed until

the doctors ran the necessary tests. She was right. The book doesn't beat up

the medical profession, but works to understand how and why such errors occur. I

really love the way it will help me as I have to deal with doctors in my

future.

I am very envious of your daughter and others in this group who have such

loving and passionate advocates to fight for them. Many of us with this disease

are not only trying to deal with being sick, weak, in pain, etc. but we have to

confront the drs on our own behalf. Sometimes when I watch Mystery Diagnosis

or even read these posts I just weep because I wish someone could step up and

take over that aspect of my life. I just feel so tired and discouraged that I

want to curl up and wait for the disease to run its course. 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

>

> The review for this one looks interesting, but didn't give much clue as to how

her struggles with her disease might be worked in. Now if I could just find one

she wrote about vampires - that really might capture my daughter's interest.

>

> , Mom to 18 yo daughter UC 6/95, PSC 3/09

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