Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Wednesday, May 02, 2007

My head exploded earlier

But then I put the pieces back together and I think I'm almost OK again. Oh, I'm frothing at the mouth if you even mention the word (shhhh) insurance, but otherwise I believe I am fine.

Today we went to see the Pdoc to talk about medication. It's a daunting topic on the best of days, but this wasn't the best of days to begin with, because my freaking home health aid is the worlds WORST cleaner. I swear it, she has done the impossible: made my house dirtier after her 3 hours of "work" than it was before she came. She is HORRIBLE. And I believe that I am stuck with her, so I am upset and angry and I want my house clean and I want her to freaking disappear from my life forever.

Which brings me to the mood I'm in. Can you say "annoyed"? Because that's my new middle name. I am annoyed with the world. I'm not angry, just bewildered at why things are the way they are.

I told the Pdoc that I wanted to take the Boy off all his meds over the summer just to see where we are, and then to assess what meds would be appropriate. This seems like a reasonable suggestion, right? Well, Pdoc thought it was too. Unfortunately, it has to be done in a hospital setting. Well, truthfully, there is no way I would do it at home. I think it's probably just too dangerous to try. It needs to be in a secure setting.

So guess what the Pdoc told me? Come on, guess!

No insurance will pay for this. They used to do it all the time. They won't anymore. At all. Ever. Because, as I've mentioned about 10 bazillion times before, insurance companies are total asshats. I hate them. All of them.

So, we're kind of stuck between a rock and a hard place. We have to wait until there is another "episode" (which could take years), in order to get the Boy back into the hospital. Which I don't want to have happen because it's scary and sad and very hard on the entire family. Plus, he's doing quite well now that he's stable out of the hospital. The first few days were touch and go, but he's rebounded and in a good place and I'm liking him a lot more now that he's more pleasant.

In the meantime, we're cutting back on one old drug that I just don't see the need for, half doses for a couple of weeks, and then gone after that. And we're sticking on the new drug that I'm not happy about until it achieves efficacy, which should be in early June. The one plus of this med is that it makes him tired, and he's going to bed without the slightest argument, something new. And he wakes up by himself easily, too.

What I don't like about it is he's spacey and he says that it makes him dumb. Like that could ever happen. But he is spaced out and he spends an inordinate amount of time in his own little world of South Park quotes and lines from movies.

All of this means that we're technically on hold for another month. I mentioned to the Pdoc that I was thinking about changing things a lot and pulling him off A, B, and C, and trying another med in place of all of those, and the Pdoc said that this was a good choice and that he was willing to try it BUT, that other med causes serious rashes so we would have to be very very careful at first. Aw shit, is there no easy answer to all this.

I'm telling you, I'm freaking sick of reading the PDR. Is it weird that we even HAVE a PDR at home. We do. I get a new one every couple of years because I need to know about drug interactions. My family, meanwhile, is keeping Walgreens in business. That evil empire of rude pharmacists would close if it weren't for our family, I am convinced. They're still rude and irritating though.

Whinging... it's what I do!

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Blogger Blog Antagonist said...

I can only imagine how frustrating this must be for you. We are starting down this road with my youngest and it's already a huge headache. Insurance reform is my hot button issue these days. Something has to be done.

I hope you can find a way to get your child the medecine he needs. It shouldn't even be an issue, should it???

2/5/07 6:55 AM  
Blogger Mama C-ta said...

Everyone is entitled to a good bitching every now and then and it sounds like this is a very good time for it. Insurance is a 4 letter word to me, there is probably nothing I hate more but I've only had to deal w/it regarding my own health. I'm sure it's 100 time worse when it's in regards to your kids.

2/5/07 8:47 AM  
Blogger Rhea said...

Your frustration is totally understandable. You are trying to do a good thing for your son, so why do they make it so hard for you.

2/5/07 9:06 AM  

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