Well here I am. Sorry for the lack of bells and whistles. When I graduated high school I was given an electric type writer so technology is a little suspect in my book. Don’t even get me started on the fax machine! I just know that machine is run by little magic elves, never mind all those 0′s and 1′s. However, I promise as I learn more about blogging I’ll make this a prettier place to visit though.
Mainly I am doing this blog for me and my family and my friends. You see, I was diagnosed with this wacky, incurable disease on Wednesday that no one seems to know about. It’s hard to find more than general information on the web, and even my physician has been sketchy about my treatment options. I am selfish and I need to talk about this!
However, if I keep talking about all of this to all of my loved ones I am going to drive them fruit. Talking=processing and right now my brain is on busy signal…how can I have this incurable disease? This does not compute. I need and crave hemochromatosis related conversation ad infinitum, ad nauseum. I need those kind of what does it all mean? type discussions I used to have with my college friends at three AM over coffee at the Junction.
The way a fax machine goes about faxing has been explained to me and I have memorized just how it goes about its business. That does not mean I believe the explanation…it’s just too bizarre that a copy of a sonnet by Shakespeare, a picture of a frog, or a grocery list can be sent to you in Seattle while I am sitting here on my cozy couch in central Illinois. I don’t believe in faxes and I can’t believe I have hemochromatosis. And that’s about it.
Its amazing how many things we are not aware of that effect people you love in devastating ways. Keep us posted Karin. It’ll be an interesting journey that will touch and educate thousands (or maybe millions!).
Dear Karin, I just read the Mayo Clinic article for patients. What treatment options has your doctor offered to you? I know with your fierce determination and spirit, you will give this a real “run for the money.” We will be following your blog and pulling for you. We love you.
Thanks for the encouragement.
I am going to see a specialist next week. My general practitioner MD seems to be on the same learning curve as I am regarding diet and phlebotomy. Most of what I know about hemochromatosis is from my internet education. The mayo clinic is always a good site for laymen…I should link it here!
I know it’s hard, But you have a positive spirit
and you’ll learn how to control this…
Karen
I have hemochromatosis and pretty sure I know more about dealing with it than most doctors.
I swear my doc is trying to kill me.
Please check out my blog for some really good info that can save your live. No kiddin.
Pat
http://ironoverload.info