Monday, May 23, 2011

Perseverence

Lily is calming down, after a storm of psychosis stew.  Yeah - mixing metaphors again, chalk it up to fatigue.  I hang in while we're in crisis, and then I sort of fold in on myself for a day or two or three.

Lily is still feeling spiders all over her skin at various times throughout the day, but her disorientation is waning, as are the confused thoughts about strange and random things.  She is taking a bit more Zyprexa - not preferable in many ways, but better than experiencing high levels of psychosis.  She hasn't complained about her feet and hands since we reduced the Topomax, and I'm not going to ask because I don't want to remind her and stir up the symptoms.

I still feel so stymied about resources available to help us manage on a more normal level.  I've focused my search on our town, but clearly need to push to find services in neighboring cities.  The services I'm finding in our small city seem to be geared towards probation support for juveniles.  That's not what we need.  As long as I can devote my time, 24 - 7, I can keep Lily safe.  The difficulty with that is that I also need to work, take care of our home, shopping, paperwork, and care for my younger son.  I can't do it all.  How does anyone manage this?

I don't have a way to pay for respite care, if I could find anyone here qualified to provide it.  I know, I'm whining, but I need to find a way to get on an even keel.  For the first few months, I kept thinking we'd get Lily's meds balanced so that she was functioning pretty normally, but 11 months in, we aren't there.

I'm telling you, I'm about ready to call my congressman.  Think that will help?

I suppose I really just need to knuckle down and figure it out.  I've been making calls, but just not to the right folks yet.  Perseverence - perseverence -perseverence.  I can do this.  I can.  Just one more call, and then another, until I find what we need.  It has to be out there.

2 comments:

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  2. Have you tried to connect with an advocate or resource person through the Child and Adolescent Bipolar Foundation? What about the Juvenile Bipolar Research Foundation? Hopefully someone there can help you find resources. There has got to be someone to help you!!!! There is a list of website resources here on my blog: http://www.lifestwistedstitches.com/p/children-with-bipolar-resources.html

    I really wish I could help you more directly. I'm holding you in my thoughts and prayers. Sending you positive calming energy!!!!!!

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