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Below are the 10 most recent journal entries recorded in the "jaz49" journal:[<< Previous 10 entries]
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01:43 am
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We have moved!
Our blog has moved! We can now be found here at blogspot. There are several new posts from this week, so come visit us there, and please update your bookmarks.
Thank-you
todaywithdonna.blogspot.com
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12:48 am
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cabin fever
It was cold and blustery today...not much to do but stay indoors. We wanted to go to Dunkin Donuts for some hot coffee, but Donna was so cold we only made it as far as the hospital cafeteria. Their coffee is so awful that Donna decided to settle for hot cocoa. I had half coffee...half hot chocolate. I read the paper while Donna watched a little TV. We've got to get that lift fixed soon!
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10:59 pm
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accessibility (updated)
It snowed on Sunday the 12th of Feb. Today, Valentine's Day, there was still snow and ice piled up on every curb cut in town...left there when the snow plows went by on Sun. Donna had to drive her wheelchair in the road, and when we wanted to go on the sidewalk so we could go to Dunkin Donuts, I had to remove as much snow as possible with my foot, and then push her chair with all my strength or she would have been stuck there at the curb with her wheels spinning, going nowhere. This is two days after a snow of about four or five inches! She was very angry to say the least. What if she was alone? She would have had to turn around and go home...another day wasted like so many before. I can understand now why she had so much anger when I first met her. These kind of incidents happend probably several times a week...for most of her adult life. To add insult to injury, when she tried to go to the gift store at the hospital where we went to do her banking, she couldn't get in. The entrance was too narrow with all the Valentine's Day displays blocking the way for her wheelchair to get by. Isn't this illegal? We were both understandably very p.o.'d!
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11:56 pm
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Take charge Donna
It's fantastic to see that Donna is finally taking an active role in her care. For a good part of her life she was in institutional and semi-institutional settings where she had very little control over her life and very little say in directing her care. She has her own home health aids now, and she is allowed to direct her own care...an idea that, until recently, was new to her. I read a social worker's evaluation of her that she had saved from some 20 some odd years ago, and they concluded that Donna was not ready for independent living at that time. Well, how could she have been!!! She was never really taught how to be in charge of her own day to day living. Plus she was so drugged up that she could not even think straight. (I discussed the mis-management of her seizure medications by her doctor in another post many months back if you are interested). She was encouraged to be a 'good client', to not make waves or challenge authority. No one ever gave her a chance. Many, many times we complained to her doctor and her nurses that she was tired all the time. They never even acknowledged that several of her prescription medications were causing that problem. I'm not even sure they even made the connection. Well, it's taken Donna a while to get used to directing her own life, but since I started encouraging her to take charge of her own life, she has been getting better and better at it! I'm very proud of her, and she's rightfully very proud of herself.
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01:01 am
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van lift
We're still searching for a used lift for Donna's van. Her social worker has tried to get financial aide to help with the expense, but she has come up empty handed. Sometimes I wonder how much we as a society are willing to invest in people like Donna. I know we spend a lot of tax dollars just to cover their basic needs, but "man does not live by bread alone." When you love someone who is disabled like Donna is, you naturally want the best for them. Unfortunately, those of us who pay the taxes which pay for her services don't always have as strong a commitment to their well being as their loved ones do. A few extra dollars a year in taxes from all the middle and upper class taxpayers would make a world of difference to people like Donna. Why can't we find it in our hearts to give just a little more! Is it a matter of being totally self-centered, I wonder...not giving a damn about anyone who is suffering? "It's not my problem", many of us probably think. I wish I knew the answer.
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12:31 am
[Link] | I'm testing two new banners for my music websites. I hope you get a chance to visit one or both of them. You can listen for free. If you like any of the songs, please spread the word. Any CD sales will go to help Donna get her van lift fixed.
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01:35 am
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Battle of the bands
I was in a Battle of the Bands last night at ProjectOverseerProductions on the web. I didn't win, but got a lot of very positive feedback from many of the people listening. The song I entered is the first one on this page here. I don't have the time to play in a band because I'm busy with Donna, but I enjoy being a band in cyberspace.
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12:03 am
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No bus trips...cabin fever arrives
I called Access Link(NJ Transit) twice today and could not get any trips for Donna for this week...not even a trip to go to the market to do her grocery shopping. I think there's only one bus available during the time frame she needs, and someone else has it reserved on weekdays. It certainly doesn't seem fair. Well, tomorrow I'll try and get her a ride for the weekend. Sat. and Sun. are usually available if you call early in the week. The weather was horrible today, and it's expected to be worse tomorrow, so Donna will be stuck at home...NO TRANSPORTATION. The winters are horrible for the disabled here in New Jersey! No wonder so many get depressed.
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12:53 am
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Christmas
A very Merry Christmas to all of you who have been following Donna's story! And a Happy Hannukah to our Jewish friends! There are so many who are lonely and suffering. Let's keep the spirit of Christmas in our hearts throughout the WHOLE YEAR!
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07:44 pm
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New Photos
New photos have been added to our online photo album here.
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