Boycotting House

The story last night on "House" was about a teacher for children with special needs. Right before the teacher fell over in the classrrom vomiting blood a female student in a wheelchair was shown to pee in her pants. Nice characterization of special needs kids......on top of that, the wheelchair they had her in was the generic type you find parked in kmarts and walmarts for patrons with ambulatory problems. Having a special needs daughter with cp who has been in a wc for 16+ years, kids in wheelchairs that are clearly not their own and ones the must soil their underwear while in them are a pet peeve of mine. Later on House refers to brain damage the teacher may incur if not soon diagnosed and says she will need her own special ed class.

Saturday at the fe fe meeting

Amy is the fe fe and she is at her support group meeting on this saturday morning as I sit in the lobby of Access Living of Chicago and wait for her. This is the first time I've brought my laptop out of the house. I figured out how to find an available network and connect to it and i'm pretty proud of myself. i just ordered lunch from the restaurant across the street, el norte, so i'm looking forward to some mexican food here in a bit. In the background i hear the sounds of the girls' voices in the meeting every now and then picking out amy's voice. i don't know what goes on in the meeting. i spose i could sit in there and amy'd never even know i'm there given her lack of visual acuity. lunch is served during the meeing and today it was chicken wings, fried and something else. hope amy fares well.

i'm sitting in the lobby and i don't think the heat is very high. my feet are numb and i'm about to put on my coat......maybe the spicey food will warm me up. waiting..................

Still Friday Morning

once again changed my blog name and description. just in case i drop dead i want to be clear that there is a bright spot in my life and that is my daughters. all three of them. Just as i know they want me to be around in years to come, let there be no mistake about this. i want to be here too. and it is because of this i feel like a deer in headlights as i try to sort out all the right steps i need to take to insure that i will be here. i feel like i am at a crossroads. its now or never that i have to get things right. find a place for amy to grow and blossom, regain my health before its too late which i pray it is not, and be around to be the mom my girls need in their futures. but where do i start? think i'll do the dishes that have been in the sink for 5 days for starters.

Malaise or Mayonaise

watched a show about hormone replacement therapy today on oprah. i now have a new thing to worry and wonder about. could the general malaise, lack of energy/hope, tiredness and ability to sleep at any time during the day, disinterest in life and the people in it be the result of a hormone imbalance? Or is is the rheumatoid arthritis and pain that makes me not want to move, cook, go out, do basic housework, interact with others? or am i just depressed? or am i still getting over my divorce? or is it caring for my 21 year old disabled daughter by myself and dealing with her boredom, anxiety, and disconnectedness from life? or is she that way because of me? or am i worried about not being supported by my ex and the diminishing of my small bit of money left by my mom? or is it the 100 plus pounds i need to lose? is that why my body hurts so much? and why can i not eat in such a way that causes me to lose weight? and why can i not stand up straight without becoming winded and so weak i must lean on something? or is my general weakness felt for at least the last four to five years because of my arthritis and my not using my body and thus causing weakness? is it the physical care of my daughter and the worry about her future and future happiness wearing me down? is it because i feel as if no one else in the world really cares about her because i have cared for her alone all of her life. i mean really cared for her......... gee i don't know. maybe i'm stressed out because i need to work but don't have the physical strength to walk about my own house without a walker???? maybe i'm stressed because i have had NO medical insurance/care for almost a year. maybe i'm afraid of dying soon as things continue to spiral downward daily? maybe i'm worried about the economy, my non supportive ex, losing my house, and basically being homeless in the near future. but what most worries me most of all is my inability to move forward positively about any of these thing, to take steps in the right direction for more that three hours into the future, to care about any of this enough to be able to even express what is happening to me?

This Blog is Two Hours Off/Early

its six pm. went into the kitchen, opened some fish fillets not knowing what i was going to do with them, read the package and got the idea for egg and breadcrumb breading, and then started looking for breadcrumbs. In the process, I yanked packages and cans and boxes of pasta out, leaving them on the floor still.

its at least a half hour ormore later now after two phone calls--one from al walking home from work and one from my only friend, amy. its after 6:30 and no dinner is made and its not going to be. i need a plan where food is ready early in the day. i cannot cook, prepare, clean up after i have greeted amy from school and done the whole bp and chair change. it drains me.

gotta go order takeout and watch tv like i do almost every nite. what a life.

i hate my blog description. and i hate the gray little spider that has made its way onto my laptop on my bed here. that may explain some of my little bites here and there. thought i was coming out of the depths but never left i think. school bus sounds. bye bye

No love here

today is worse than yesterday but not as bad as tomorrow. sounds like a song from the 70's. my physically handicapped daughter is crying and wailing for a "helper" to arrive and get her out of bed and shower her. the usual one is unreliable and now we are waiting for the fill in who has yet not arrived. worst of all i know i should have gotten her up myself. i didn't because i pay people to do it because i have rheumatoid arthritis and am generally unable to do it quick and efficiently but today i should have just gotten amy up myself.

i am not paying for today as if it makes matters any better---or for the day recently this same thing happened and the worker showed up sick and coughing all over the place. amy needs to be cared for by someone other than me, her mother. and that is a source of angst for both of us as is the change in her life, my life, as we work towards finding her a different place to live and grow and become herself away from me, her depressed, obese, in pain and broken down mother.

amy is 21 and several years back is when i realized that the easy carefree times are long gone in terms of being her mom and life in general for me. i used to refer to a general ache i always had in my heart for her because of her disability cerebral palsy and the different life she has been assigned.

it is 9:20 am and the helper is still not here with the original arrival time having been at 7:30 and every minute i hear her crying i know i should have, should right now go and get her up but not doing it because the helper is bound to show up any minute. right. the employee from the agency did not call me to tell me that she'd secured another person to come to my house. i finally called to find out when the regular helper would be here only to learn that she was not coming after all and someone from a town 10 miles away would be here. that was an hour ago. it is so unfair for amy to lay in bed and wait and for me to assume this person is moments away from arriving.

its an hour and a half later, amy is up without shower because she was so worked up she opted for a bed bath, breakfast is over and i'm about to start on the kitchen which has not been cleared of dirty dishes for over a week. allison is due back early this evening from hawaii a nice little perk of having a bf whose parents take great vacations and bring her with.

i never recovered from xmas and slid into a slump after amy went back to school on the 7th of jan. we had about 15 days at home together with cold temps, snow and ice basically isolated from anyone and everyone unless i ventured out with my walker to take in a movie with amy driving a big cold van with a dangerously loose running board i have to balance on hanging on to the steering wheel as i pull myself up into the van. once i'm in and have caught my breath all is well till its time to get out again. in and out of that van is rigorous activity further aggravated by a left shoulder that does not work and is in need of replacement according to docs who say it is "bone on bone" which explains the excruciating punishment it doles out when i attempt to put it to work. to complete this picture i am at least 100 pounds overweight and my knees, ankles and back can no longer support the load so i am sedentary, weak and breathless with the slightest output. and i don't see things improving in the slump/hole i have come to call normalcy.

Inactive Despair

inactive despair the opposite of active love the blog name. why am i wasting my time writing negative despairing thoughts? because i can not write anything else these days. i am in the lowest of lows ever. never have i done so little, been so inactive, let amy stew in one of her books on tape and cared so little.

i tell no one how i feel. to what end? i don't want attention or advice and no one can help me. i'm on a downward slide which is gaining momentum. i am steeped in guilt over my lack of involvement in bettering amy's life. all i want to do is sleep when she is at school.

pain is one issue. weight is another. anger, resentment, and self pity. fear of amy's future. and mine.

i try to refresh myself with meditation and good actions but lasts a short time. this might be something to big to battle and win over this time.

and i am lonely. i think i am. i choose to keep to myself. phone conversations are bland and short with me. i will not lay my world open. it is too bleak and my energy is too low to even try to tell what is happening to me. i am writing this because i still have a shred of hope for change. maybe i will look back at this and be thankful to be out of it, past it. i hope so.

wasting my life

that's what i've done for the past four years and i can't stop.