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I filed appeal against the decision of RIO, you will read everything here as soon as I know more.
With the decision of my health insurance about the daisy-player however I do nothing. Even though I think I have a right to a daisy-player, I also think all my energy will be for nothing. So I just hope Stivor can mean something for me in this. I did get a daisy-player of someone, but it would be nice if it were my own. This daisy-player I have on loan so to say so it is not really mine. I think that if this daisy-player would become defective I would have a problem. This daisy-player also not fully suffices my needs/handicap. Don’t get me wrong please; I am really very happy that I get it, but things like rewind and forward is a crime, it is just not doable for me.
Because I mostly listen spoken books at night, no one is there to rewind or forward it for me. Those 2 buttons are very small and the worst part is that you really have to push them real hard and keep them pushed and this I something I can’t manage.
As for this I wished the libraries had stayed with the old system; audio cassettes and walkmans which are just easier to operate and of course much cheaper.
What I do love on the daisy-player tho is the ability to adjust the speed of the talking voice. In my case slower so I can follow and understand it better/easier. I just have much trouble with following and understanding a conversation, a spoken book etc, that there has to be spoken quiet and slowly. Only then you have some chance that I can follow and understand you/it.

Unfortunately I keep worsening and so I am again 100% bedridden for some months now. I think it is since October 2003, but I am not sure. Before that I could walk a few steps and sit a bit, but that is not manageable any more. I also have to use the urinal for lying use only, because I can’t manage anymore to go to the toilet with my wheelchair. So I am again flat on my back 24/7 and get bed-washes again and stuff. I have to say it was real hard to accept this after it has been a bit better. But hey I keep hoping that when the nice weather comes I will again improve a bit.

The other day on Wednesday I suddenly felt bad and weird; more exhausted, more pain, more dizzy, more nauseous, inflammation of my throat, suddenly crying for nothing, I was depressed without a reason etc. A few days later, Friday, I found out the cause. My pgb-help came in and I immediately smelt and saw it… curly hair.
It appeared that Tuesday morning she had been at the hair dresser to let her hair curl. I didn’t know this, because I hadn’t seen her yet and because Henk always opens the door and windows and put the air cleaner on the highest level as soon as she leaves our house so I hadn’t smelt anything. My body however had noticed it considering those weird symptoms.
I have sent her home, because it was just not tolerable for me… pretty soon I couldn’t talk or move anymore. Luckily it went away after an hour after she had left, but pleasant is something else and besides I will some complaints the coming days due to this like more exhausted, more pain etc.
My body apparently reacts to chemicals regardless if I know that there are chemicals there or not. So now they can’t say anymore that I react out of fear or something or that I overreact.
I finally had to pay my help for one week without her having worked for it. She actually had to stay away longer but I couldn’t be without help any longer.

Some 2 weeks ago I heard from an Australian friend that there are so-called voice amplifiers. She told me that she would get 1. Because I have voice problems since 1998 I also wanted a voice amplifier and so Henk searched on the net and he called the company of which I have the laptop. They confirmed that there were voice amplifiers and so henk explained my situation and they also find that it would be something for me and so they did some inquiry at my health insurance. As actually suspected my health insurance rejected.
As stubborn as I am I still officially asked for one although I didn’t had much hope, but I still wanted to try and would be very happy if I would get one. This because it would mean that I then maybe once in a while could call a friend again, that Henk would hear me better (even if he is in the same room as me) and that maybe I sometimes could call/yell for him. It may be weird to you, but it would be nice if I could yell for toilet paper of that I could call names and rant towards Henk and that he would also hear this.
My voice problem is that I have a real soft voice (too less voice volume), so that I have to force my voice (shout) if someone else wants/needs to hear me. Each time it causes me a relapse with at least 1 week of throat inflammation due to forcing my voice.
I even haven’t had any voice at all for 2 years, I even couldn’t whisper anymore. As I were in the hospital back then a nose, ear and throat specialist examined me and he confirmed what I already thought; the muscles who control the vocal cords didn’t work anymore due to exhaustion. As this specialist said back then it would start working again as I would become less exhausted and indeed it was as he said. But apparently I am still too exhausted, because my voice still doesn’t work the way it should and now that I am getting worse again I also get more trouble with my voice again.
I just hope that my health insurance realises that a voice amplifier would mean a lot to me and would give me more freedom. I prefer a voice amplifier which is attached to my glasses, so no only for when I am on the phone. So, as usual, will be continued…

March 2004 part 1

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