While I plan to consult with my doctor(s) on what I find online, I am finding I like this particular site dedicated to hemochromatosis and treating it, http://www.hemochromatosishelp.com/. It is done by a holistic doctor who himself has hemochromatosis and does a great job of explaining the disease as well as examining diet and options of what one can do to actually reduce iron levels in conjunction with blood letting. One page I particularly like is the one dedicated to diet, which is, of course, perhaps the biggest life change one with this diagnosis must accept.
A good quote that I have in the back of my head, almost like a mantra, is: "Nourishing our bodies and enjoying our food are just some of the many reasons why a hemochromatosis diet should not be too restrictive." Word. I have come to the conclusion that, while there are some very obvious foods to eliminate and/or cut (i.e., red meat), one needs to focus more on what one can have, as opposed to what one cannot.
I think, for myself, the biggest hit to my diet is the suggested elimination of sushi and raw shellfish. I love sushi, have been eating sushi for over 30 years, love oysters, LOVED the lobster sushi Amy and I enjoyed during a dinner out with our friends Cyndie and Andy during a trip to Vegas. So the big question is: If eating sushi and raw shellfish has not affected me detrimentally in my life so far, why should I completely eliminate it? Here's the danger: There is a particular bacterium called Vibrio vulnificus (http://en.wikipedia.org/wiki/Vibrio_vulnificus) that lives in the ocean and can be present in seafood. Cooking seafood eliminates it, but I have read that some with my condition believe we shouldn't even be handling seafood as it can be absorbed through the skin. I think this is a wee bit alarmist. This bacterium can react explosively in people with hemochromatosis and result in death. But hey, what's life without a little excitement, right? What I am getting at is that each person with my condition exhibits their symptoms individually, meaning not all are the same or on the same level of the disease. Information, testing, and I think a common-sense approach to your life changes is key.
In the meantime, I am already pretty fucking tired of being a pin cushion this week, between the liver biopsy, the shots associated with relieving the pain of that procedure, the blood labs, the IVs...yeah, pretty tired. And I still get to look forward to my first blood letting next week. Woo hoo!
Meh.
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