Tuesday, May 31, 2011

Have a Nice Day

I've been trying really hard to get to Updateville for days. Something always seems to get in the way. A lot of work stuff, the medical stuff, then Jen took the kids out of town for the weekend.

I anticipated an update amidst a major basement overhaul, but she returned early with Bennett because she was feeling ill.

And now tonight? Bennett is just losing it. Inconsolable. Ironic that recently his new medication, Risperidol, hit the max dose a few days ago. This was supposed to curtail the massive behavioral outbursts. The biting, the hitting, the throwing of the food and shit.

That still happens because HE CAN'T FUCKING TALK. But at least the drug has him nice and miserably constipated with a bleeding butt it is so bad. Hey, we finally have something in common. Yay.

So he FEELS terrific. And occasionally he is less irritable, though I just don't know if that's Drug or Kid.

How would I know? HE CAN'T FUCKING TALK.

Bad mood? Yup.

It'll pass. Always does. And I'm not dying. Just super bad intensely bad reflux. You can now add a seventh medication to my daily regimen.


Man this is a crappy post. I was supposed to be headed in the opposite direction. Should I hit 'Publish Now' or 'Save Now'? Decisions, Decisions...

Fuck it...



  1. Wow. You are in a fabulous mood, aren't ya? I am having the same "she can't fucking talk" issues my own self. She's been sick since Friday (awesome holiday weekend....) and I have no idea what hurts or how to help either. It is definitely uncool.

    I am really sorry the risperidone doesn't seem to be helping. And about the constipation. That continues to be one of Maddie's major probs too.

    Anyway, no good advice here. Hope maybe the angry post helped you release a little of the angst. Just wanted to say hi and that I know some of how you feel.

  2. It's good to hear your voice -- however grumpy it is. I'm sorry to hear about the continued Troubles. I feel bad for Bennett -- for the drugs, for the behavioral stuff, for the constipation. I'm going to go out on a limb and remind you that it wouldn't hurt to support him with some "alternative" stuff -- osteopathy, maybe? I know it's all overwhelming, but I feel strongly that alternative medicine, or integrative medicine can really complement the regular stuff. For you, too.

  3. Right here with you on the "can't fucking talk" thing.

    Wait and see on the risperidone. If I read the literature right, it takes 4-5 days after a dose adjustment to see a significant blood concentration change.

  4. Between tube-feeding, fake-food, lots of meds, and a jacked up muscular/nervous system, we constantly battle Izzy's vicious constipations. The only thing that helps her is Miralax (polyethylene glycol - also sold as Purelax, Glycolax), otherwise her pooping-events resemble birthing a child (I even yell push push). The polyethylene glycol increases the water in the intestines so the stool becomes soft as a result, it doesn't just produces the urge by increasing motility. You could also try probiotics in form of a supplement (Florastore Kids worked the best for us) or kefir (I made my own from grains but you can also buy it in any grocery store), and good ol' prune juice.

    As for the not talking, I feel ya.

  5. Liz
    Yeah tell me about it. But you understand...when they feel bad, you need guidance, and when they can't help guide you, all you want to do is put your melon through brick.

    And a 'Hi' from you always helps, so thanks.

    I'm not opposed to the hippie stuff, I'm really not, I simply have no one to guide me through it. I just don't know no hippies. But if I can just go out into the forest and find me some I am absolutely open to the idea of all that Eastern mystical voodoo medicine. And I'm not just being sarcastic either. I just need someone to hold my chemically bloated hand and point me in the right direction. My luck and I wind up somewhere getting a happy ending.

    You of all people can appreciate that, I know. Yeah I know the turnaround time on the drug is a while. I just think no drug is gonna cure what ails him, just like his Pa. It's gonna take hard work and time and a lot of luck.

    Thanks for the advice. We have added Miralax into his regimen. Ironically it is a daily part of my routine now. It had to be. Sorry to be blunt, but my back door issues have become so bad that I had to. And now that the docs want to add Medication Number 7 to my daily drug cocktail, I presume I'll be shitting granite and exacerbating the roid rage even more.

    I see a very painful ass surgery in my future. Pardon the pun, but I shit you not. But I can't sit on wooden chairs right now, I gotta sit on a pillow.

    I'm also considering just getting a dog dish and living life like a canine. Instead of dog food I'm just going to fill the bowl with Fiber One, and that is the only food I eat all day long.

  6. Blogzilly, I have to argue against your use of the "hippie" and "voodoo" thing. Integrative medicine is no longer fringish -- if scientific "proof" is your bag, there's plenty of it. I'm not sure what state you reside in, but a bit of sleuthing should lead you to a wellness center, a place where doctors are treating the whole person -- you could also look for a Traditional Chinese Doctor and/or acupuncturist. Most hospitals have them on staff, now, particularly in pain clinics. I took Sophie to a Chinese doctor for three years, twice a week when she was about five years old. She stopped having drop seizures, began to sleep through the night and we weaned her from two of the three drugs she was on at the time. I firmly believe that her life would have been profoundly different and far more uncomfortable if we hadn't done those things, even though her seizures have never really been controlled. And me? Without my weekly acupuncture and Chinese herbs, I would probably have killed myself long ago. I'm dead serious.

    Just saying.

  7. I'm yanking your chain...you remember that sense of humor thing I go on about sometimes?

    Just saying. ;)

    Besides, I AGREED with you...even though I did it in a funny way (at least in a way I thought was was funny)...I just am afraid of the unknown, and like I said, I need someone to hold my hand and lead my through that unknown. But I don't think that it isn't real...I just call it those things to bust your so-called 'balls'.

    But you GOTTA know I'm being facetious, right? I mean...you know that, RIGHT? I have bitched about the Chemical World before and I am a walking Frankenstein's Monster right now consuming so much of it that it has hugely affected my health.

    Anyway...I don't 'poo-poo' that shit...(hey, now THAT'S funny...) as Fringe, a lot of it is very helpful and proven. But I'll always be slightly afraid of the poisonous frogs and make fun of 'em.



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