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>I'am desperate to get back to my life and refuse to >accept this disease as the defining characteristic of >my life. So, I have spent a great deal of time >reading/researching and being my own case study. I >have read many books and just as importantly kept a >health journal - documenting how I feel, what I eat, >daily activities and things of that nature. I also >began a vegan diet due to the mounting literature that >pointed out the vital roll A PROPER diet plays in our >overall well-being. Heres WHAT I KNOW. >First, I should tell you that since my last entry my >liver has grown - I am being placed on the liver >transplant list. My liver is down in my pelvic area >and occupies roughly 75-80 percent of my abdomen, and >is LOADED with cysts. Childbirth tickles in >comparison to the pain I sometimes feel. I'am always >experiencing some type of pain so in turn I'am always >"on something". Being "drugged up" so-to-speak is not >conducive to being an active parent, working, driving, >walking - living! However, I simply REFUSE to not >live my life. I end up suffering from the early part >of the morning 3-4 a.m. to anywhere from 12 noon or >3-4 o'clock p.m. Somedays its an all day affair. >This happens because I decide - if I'm not >experiencing any flu-like symptoms - to do normal >everyday things. For Example, too much stair climbing >means a whole lot of pain the next day. Too much >walking also means trouble the next day. >WHAT I KNOW is that 1) a person with Polycystic >Kidney and Liver Disease (one, the other, or both such >as I) NEEDS to pay close attention to what they eat. >2) Find your "peace"! - mine is music. and 3) >Surround yourself with information; I have even found >very helpful information in a cancer cleansing book. >Know exactly what you are dealing with so that you can >help your physicians deal with and treat your >condition. >I have so much more information: personal stories and >findings. I am open to e-mail from someone else that >is dealing with this, perhaps we can share and help >one another.
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