Wednesday, February 18, 2009


I randomly search the Internet for new information on Amonte's disease (Steatocystoma Multiplex) in hope of finding a new treatment. My search often includes blogs. Imagine my surprise when I came across this blog. With multiple copies of an entire post of mine copied by an author named Your Body Sucks. Word for word.

I find this disturbing on so many levels. First of all, when you do a blog search for SM this is the very first post that come up. Someone searching for assistance, information or maybe friendship is led directly to this asshole. Secondly, he apparently finds the pain and suffering of others something to be used for his own amusement. Third, Blogger makes it a bit difficult to deal with this. I will have to file an infringement notification and wait for their response. I did leave a comment requesting that MY post be removed within 48 hours. Doubtful he will comply.

I have always been very open on my blog, especially when it comes to Amonte's illness. I have been spammed, ridiculed, lectured and criticized. But I have always felt that if anyone else could benefit from what we are dealing with-if anyone found comfort knowing they weren't alone-if anything good could come from his pain...then pouring my heart out to total strangers is worth it. I refuse to censor myself now. Or ever.

Feel free to overload his inbox with hate mail on my behalf. Fucker.

Tuesday, February 17, 2009

The Return of the Azzdate

This kid can't get a break. Mid January Amonte got signed off of daily wound care from his September surgery. A week later a new cyst appeared on his leg and a cluster of them on his tail bone. Amonte is getting really good at recognizing the symptoms before they even appear so it was caught fairly early. Easy surgery, able to close with sutures, no wound care. One week later another one in his groin. Surgery this week did not go quiet as well. The cyst had grown significantly and started draining. This makes it much more difficult to remove the cyst and wall intact. The surgeon was able to place sutures in the lower level but had to leave the top layer open in hopes of preventing an abscess. Although this will not require major wound care it will still need a daily dressing for the drainage and the healing will be significatly delayed. He was much more painful this time and the anesthiologist apparently did not medicate him for nausea so he spent most of the night post surgery puking. Lovely.

Amonte seems to be holding up fairly well under all of this. He is depressed which I would expect and it has taken a major toll on his social life. But somehow he is still able to make jokes and look towards the future. I am not coping as well. I'm totally overwhelmed and angry. Really, really angry. I feel totally alone and helpless.

I know it could be worse. I know that this is a lifelong condition. I know that he has had surgery before. I know he will have surgery again. Knowing it does not make it easier. Every time is as difficult as the first. And I imagine it will continue to be.

Thursday, February 5, 2009

The future of Rock N Roll

Yesterday in the car:

Peyton: We started a band at school.

Me: Cool! What kind of band?

Peyton: Well. I got fired.

Me: Fired? Why?

Peyton: Robbie fired me cause I asked for day off. He said "no" so I kept running away and I got fired. He wants to work everyday mom!

Dear god. Everyday???? What are his parents teaching this kid???

Tuesday, February 3, 2009

Ready For My Close Up

The ever so lovely witchypoo is taking part in Maria's Got Questions. Burning ones. And lots of 'em. I begged her to interview me so that I could have something to blog about. After some serious whining and bribery she finally agreed.

  1. If you had paid help at home, which area would you choose it to be applied? (Cooking/cleaning/laundry/child care). This is a hard one. As you know from my previous post I suffer from true domestic zeroism. It truly is a handicap. I would certainly love help with cleaning and my metric ton of laundry. If I had help with those I would not need childcare. Besides, I actually do enjoy my children and would much prefer to be with them over doing household chores. I would have to say for cooking. I don't particularly enjoy cooking-nor am I very good at it. It would be nice to have home cooked meals without the stress and mess. God knows we would eat better if someone else was cooking!
  2. What do you do to get away and do something just for you? I don't get away very often and when I do it is usually to run errands. On occasion I do go out with friends for lunch or dinner. The only me time that I regularly take is a scheduled date with my hairdresser. I spend two hours letting him pamper me. I always leave feeling pretty and refreshed. Gay men tend to have that affect on a girl.
  3. What's your fondest childhood memory? The house I grew up in had a large front porch that faced an open field. During rain storms I would wrap up in a quilt and watch them roll in across the field. The lightening would fill the sky-the rain pounding on the tin roof-the smell of renewal.
  4. Who's your imaginary boyfriend? *snort* Now just why does witchy think he's imaginary??? No really. I don't have one real or imaginary. But if I had to pick he would be a combination of Jack Black, David Beckham, Daniel Craig and Barack Obama. That could either be really hot...or really scary.
  5. How do you see yourself in five years from now? In five years all of my children will be in school full time...Amonte hopefully in college and on his own! I should return to work full time...but most likely I will devote myself to being crafty or further my education. In what? I have no clue. Maybe in textiles...
Want to be part of it? Follow these instructions:
  1. Leave me a comment saying, "Interview me."
  2. I will respond by emailing you five questions. I get to pick the questions.
  3. You will update your blog with the answers to the questions.
  4. You will include this explanation and an offer to interview someone else in the same post.
  5. When others comment asking to be interviewed, you will ask them five questions.

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