Tuesday, July 29, 2008

Picks, not much of a choice.

So, it looks like we have an answer. Picks disease.

So many things, have fallen into place ... the MRI's showing brain atrophy (why we've had three over the last 6 years showing increased atrophy, with increased white spots (I should remember what they're called, but I don't) and they keep telling me it's 'normal in the aging process ...we don't normally see it this young, but it is normal.'.

The lack of ability to control her inibihitions (ie ...the post on the sunday with the worship pastor's wife ...following me around church, interrupting like a child ... lack of social skills) lack of control of general behavior ...

Her inability to relate to someone else pain, and how it only relates to her. The seemingly increasing selfishness ... it's all listed as symptoms of Picks.

I've been stalling for several days to write this. But tonight I found out that ...she gave my son a $20 graduation present in the form of a check, then told him to not cash it ..AND borrowed $100 from him to cover bounced checks.

This makes month number 7 that she's bounced her checking account. Source number 10 or 12 ..lost track of it ... that she's borrowed from to cover those bounces ...

He tried to make me feel guilty for asking him not to do it again. How can I help her if I can't HELP HER?

Helping her in secret like that isn't really helping anything!

Somethin's gotta give.

I lost a friend this week. A dear friend. I blogged about it on my 'real blog'.

I am making an effort to make sure that my friends know how much I care ... and that nothing goes unsaid or undone as it did with this precious friend.

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Thursday, July 17, 2008

Several years ago, a very good friend of mine, and her husband built a huge house in a very nice neighborhood. Their children were fully grown, but they built a 6 bedroom house with an attic big enough for 2 families. A game room, a sewing room (my friend is a seamstress) and 2 offices (one for each) formal dining room and informal dining room ... it's HUGE ... our chuch had a party there once and 162 people came and it didn't even seem crowded.

They weren't throwing their money around, or bragging about their success ...they had a plan.

People get into trouble and need a place to stay. Sometimes for a few days, sometimes for a few months, maybe even a year or so while they get back on their feet after an abusive marriage, a death of a spouse, or something life changing like that.

Someone needs tending to after surgery but has no family ...they have the room and the means to do so.

So, they broke ground on the property and that day ...my friend and i went out to their house and walked the broken soil that had no building or foundation yet .... just a bunch of tape showing where the bottom floor rooms were going to be. She and I together prayed for all the people they'd be able to help.

She is also my prayer partner ..when something *needs* prayer, she's my first go to person, and I her. As good of friends as we are, we're not really into advising each other ... we spend a lot of time laughing, sharing ..and we pray for each other.

SO, when the issue with my niece came up, i called her and told her "Pray". She was on her way out of town ... but when she got back into town and done with her continuing education class, we got back into touch. She asked me when she got my niece.

That's what the house was built for ... issues like that. She was ready to take her that night. Um ... let me breathe here. ;o)

SO, a few days later, I took Niece over there to discuss it, and instead R took her on a tour of the house, told her she got the pick of the rooms, and the game room was hers for the use with her friends.

A week ago Monday, niece moved in with her ...and she feels like she has a home for the first time in as long as she can remember. My friends are introducing her as their serrogate daughter (including when introducing her to their own children!!) and when my friends husband called to get some tech information because the wifi wasn't working in his 'daughter's room.

I am delighted beyond belief. They've gone to extremes to give her not only a place to live until she gets married ... but they are making her part of her family. (I need to remind them, she was my niece first ;o) )

My niece is thriving in her independence and a beautiful, responsible young woman thriving in her new habitat. I do miss having another female around ;o)


School ... I'm registered, classes set, I've gotten into Voc Rehab to see if they help to make sure that I can get a few extra bit of help (like not taking tests on scantron sheets ...so difficult with double vision) and I've talked with the disABILITY resource person at the college. I told her I 2 diseases, one fairly common, one she's probably never heard of. Lupus and Myasthenia Gravis.
Turns out that she knows about lupus professionally. She has an Aunt with MG. Go figure.

(for such a rare disease, I swear I keep getting professionals who have relatives with it!! ... A surgeon's wife, a pulmo's mother, a psychologists mother and her twin sister, a previous therapists grandfather and now the resource counselor ...statistically ... that's gotta be strange!!!)

(Although, the therapist with mom and aunt ..was a referral because of her understanding, so that wasn't a coincidence, and the pulmo was ... I Was friends with his mother through the MG Foundation, she found out I was in the hospital and she demanded he go check on me. He asked to consult on my case and has been my doc for 15 years since)

Hubby's doing ok. He's excited about me going back to school, and it's inspired him to return to his own working on some home therapy ... he'd kind of gotten feeling like it was useless ..not making progress so why bother ...besides prognosis was so bad ..why bother. If the nerves are dead, they won't return so why bother?

Well, in the last 3 weeks, he's gotten enough dexterity back in his hands to button his own jeans. That's ... major! He did some plumbing today ...
He'd been told that dexterity was gone forever ... it's now back to a degree ... and well ... he's now working to improve rather than waiting for it to take over.

The set backs of working too hard, then spending the next couple of days ... that's hard ...but we both have lived like that for longer than I can remember. I run 90 to nothing till my body gives up and forces me into bed. (that happened yesterday, I thought i was up to going back to errands etc, went to the library and wound up coming straight home)


Now if we can get my youngest son's teachers all on the same page with his special education modifications this next year .... I've got the special ed director on my side ... so ...and in a district with a great reputation. There were things in his IEP that were not supposed to be there (THey are not on my copy) and one thing that was supposed to have been added that never was ... not that any of it mattered because none of it was followed.

My son has a 10 year plan ... I told the special ed director ...that they have to help, they have to do understand that his academics are far below his social skills ... and that they need to understand ... it's not typical for a 16 year old to have a 10 year plan ... and anyone that is that focused ...deserves THEIR best!
She agreed.

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