6/30/15

It's a learning experience

Thank goodness, I'm always learning something. Today's lesson was procrastination and how things aren't as nearly as hard as I make them out to be in my head. J and I filled out the disability paperwork. OK, I did the filling, he did the signing. Twelve current and past specialists. And I didn't add neurology, a current GI, or the nutritionist. Nor his former PCP who kept suggesting signing him up.
I didn't want to. And that comes from the past. It's not easy being called a leech when all you want to do is whats right for your child. And that's how many view disability. It's incredibly humbling. I just have to remind myself that this will allow me to care for both boys better.
I mailed in the signed medical release as well, so that part of the procrastination is done. I also called and left a message for the pain clinic. He's having a harder time controlling the pain even with all of his techniques. With the condition of his liver, we can't rely on many medications and going up in dosage probably is not an option. He has a good pain team who is willing to work with his liver specialist. And vice versa. With specialists, you don't often find that. Rheumatology flat out refused to work with psych despite the fact that psych and pain are his two main prescribers.  And Neurology refused to work with anyone. Which is why we're in the market for a new one. I want the whole person treated, not just bits and pieces.


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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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