Wednesday, April 13, 2011

A Confusing And Frustrating Disease

Researching My Disease

Last weekend I spent some time researching psuedomyxoma peritonei, it's called an orphan disease because it's so rare that the chances of being diagnosed with pmp is 1 in 1 million. It's confusing because the medical language is hard to decipher and most information is centered on the cancerous form which I do not have. Some of the personal stories I have read are encouraging and give me hope that if I do receive the medical treatment I need, I will have a chance to be a productive member of society as the governmental officials are demanding. I was trying to understand the mortality and morbidity rates of those that just have the debaulking (stripping the tumors off of vital organs and intestines) surgery vs. those that have the debaulking coupled with chemo. I didn't understand the numbers. The chemo sounds particularly traumatizing, it's poured directly into the body after the bebaulking process where it remains for 1-2 hours, ports are used to drain the liquid, then it is repeated for five days after the surgery. Ouch! I don't know what it does to the organs or how it affects your health afterwards, all I have been able to find is that people who survive the 2 prong approach have been able to live much longer without needing surgery as often. I'll have to discuss this with my doctor when the time comes. The frustrating part is, there is no cure for pmp, only treatment. There is ongoing research and I can only hope that brilliant minds will find a cure. This website has more information:

Looking Forward

I have been feeling better lately, I've been outside cleaning up my yard after the long cold winter we had and realized how horribly out of shape I am! A day after raking, I sneezed and pain shot across my stomach! Wow, that's out of shape! I look forward to planting and spending time working in the warm sunshine. I love being outside during summer, as a kid growing up in the country, I spent much of my time working our family vegetable garden, biking and hiking through the woods. I had a favorite spot to sit in the early evening to watch the sun set over a lake in my neighborhood. I should go there again, I haven't been there since I was a teen. It was peaceful and relaxing, I could think about things, ponder the universe and have delusions of grandeur without anyone bothering me. All of us need a spot like that!

I went to a meeting in Elkhart Lake last night about their farmers and artisan market, I'm hoping that they'll accept my work, the area is beautiful and it would be great to sell my jewelry in a place where people actually spend money. I have been selling in Two Rivers, but with gas prices skyrocketing again, it will take it's toll on the vendors because customers heading towards door county will be diminished. I'm looking to follow the money this year, I hope that doesn't sound horrible, but I need to make money, limping along as I have been for the past year is driving me crazy. I have to be very careful though, I can't do anything to screw up my benefits, I need them to pay major bills such as the mortgage etc.

I better get outside and get some work done, the weather is suppose to turn again and there is much to do outside, I still have to get the gardens cleaned and prepped. I love it though, I toss the ball to our dog, take a few swipes with the rake before she returns and all seems right with the world, at least for a few hours or so!

Thank you for your time today,


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