November 30, 2010 at 9:46 pm Leave a comment

I think I have realized that I am angry the boys have ARPKD. I’m sure that is not a big surprise. But I often hide behind my happy smile and my inner sadness but forget about my anger. I don’t know what to do with it. I wasn’t raised to really show these kinds of emotions, especially anger.  Most people don’t like angry people. But I am mad. Mad that my boys have to deal with this in their lives. I’m mad they can’t live simple happy lives like so many people out there. I’m angry that I have so much stress in my life and I’m especially angry that I don’t feel like I am handling it all as well as I would like to. I lose my cool a lot more than I used to. I snip at the boys. I’m not as patient with friends and family. I don’t enjoy work as much. I’m just not the same person I was pre-diagnosis. But I never want the boys to feel badly about their diagnosis. I do not resent them, just the disease. And I guess I am also resentful of people who take their lives and their health and their children’s health for granted.

The main thing is how do I embrace all of this. A friend of mine told me I need to look at the good ways I am handling this disease and embrace that to help get rid of my anger. Like how I am so proactive in the boys’ health. I try to stand up to doctors for what I feel is right for the boys. I make sure I have all of their paperwork in order. I do a lot of research so I know the right questions to ask. I learned how to take the boys’ blood pressure. I measure out their pills each week and make sure they take them. I go to all of their doctor’s appointments with them. I try to be as positive about this disease as possible with them. Plus all of my work with the PKD Foundation. I am actually very proud of that and the money I raised with the walks. And most importantly although I wish no one had to go through this I do feel honored to talk to other families who are newly diagnosed or need extra support and often my help. I feel like this is one of the things I was meant to do with this disease.

So as this year ends and another begins I am going to try to let go of at least some of my anger and embrace the positive aspects of my life.


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Thankful Growth Hormone

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November 2010
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