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Monday, January 15, 2001
I finally have my WebSite back up after completely redesigning. I think it looks much neater and is easy on the eyes. I used templates this time instead of designing the whole thing from scratch which made it much easier and should make it easier for me to update more often than I have in the past.
During the past week I have had reasons to bitch and complain (thankfully I don't feel I have reasons to do this very often) but have also had reasons to think positively. I have been listening to tapes on positive thinking and other types of self-help books and tapes which really help to keep a positive outlook on things. A few months ago I was doing the same thing but then stopped, and now that I have started again I can tell the difference in my attitude in general.
BITCHING AND COMPLAINING
I don't normally like to complain about things which I think is good since it doesn't solve anything. This can be a character fault though if you take it to the extreme and don't say anything when something is bothering you and saying something about it is what is needed. Which I think I tend to do at times. I guess you can call it my New year's resolution to stop doing that.
It can get frustrating at times having people in your home all the time who are not family. We have nurses come into our house for about 16 to 20 hours a day to help out. With some of them though I don't think you can really call it helping. Don't get me wrong though, for the most part we have had good luck with finding good people who are a great help. Also I am grateful we do get the help we do get because without the help I don't know what we would do, and I probably wouldn't be able to keep living at home.
It seems as if some people work here for quite a while becoming too comfortable and forget that this is not their house and they are here to work. I have to remind myself of that at times because if you start to let things go and don't say anything when they are doing something you do not like or not the way you like it done, before you know it you are miserable and begin feeling resentment towards that particular person. And in some extreme cases people begin to disregard your wishes and have no respect for you or your property.
For example, there was an incident a few months ago that wasn't really a big thing but had to do with being respected. There is one night a week that the local radio station plays electronic music. This is the only time my brother gets to listen to a few hours of music on the stereo where it sounds much better than just on his headset. It was playing at what I thought was a reasonable volume level. The nurse working that night, who had made it known she doesn't like that type of music, thought it was too loud. So she goes ahead and just turns the volume down to about half of what it was. Doesn't even say anything like "mind if I turn it down a bit?". Then when my brother asked her to turn it back up some she refused. In my mind this is sending the message "I don't care what you want" and "what are you going to do about it?".
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A few nights ago I woke up to something a bit scary, luckily I can breathe on my own some (I use the ventilator to make breathing easier because with my condition it takes a lot out of you). When I went to sleep I had the ventilator on, I woke up a bit startled and when I woke up a little more I figured out why. My ventilator was not on me and I did not even have on my valve which lets me talk when I am not on my ventilator. So, I couldn't even talk to get someone's attention. Within about two minutes the nurse on duty came over to my bed to wake me up to give me my bath. When I was finally able to speak she said something like "you were in such a deep sleep I figured you would still be asleep when I came over". My response was "not when you take me off the vent while I am asleep", in a sarcastic tone. Then she said "oh, when I took the thing off I couldn't reach you from around the other side". In other words, I was too lazy to move my fat ass to walk such a long (sarcasm again) distance around to the other side of the bed. I kept trying to think of why on earth this happened (some type of legitimate reason) but I couldn't think of one. No matter what the reason why is you don't take someone off of their ventilator without waking them up so they are aware enough to breathe on their own. I am just glad this happened to me and not my brother who absolutely cannot breathe on his own.
NOW FOR SOMETHING MORE POSITIVE
On Saturday I was able to have some friends come over to visit for a little while. Two of them have the same condition as I do. The one person I knew a while ago when I used to go to the MDA summer camp. Then we knew each other later at the community college. After that it was several years since we had seen each other than about a year ago we ran into each other at a concert and got each other's phone numbers and have been staying in contact with each other. The other person was a patient of a nurse who used to work at my house. The nurse was who brought them to to the house.
Anyway, they stayed for a little while the talk, and we made plans to go to to the fair on this Tuesday. Them and me and my brother and my mother. Also, made tentative plans to go to the U2 concert in March. It will definitely be good to get out of the house for a little while. That is all for now.