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What a fuss the past days. Everything comes all together as usual.
For example; I now listen to spoken books (audio tapes?) for a few years now. I really enjoy it, not just because I like to 'read' but also because it helps me to relax which helps to fall asleep sooner.
However since January 1, 2004 all library's for visual impaired people will use a new system, a so-called daisy-player which you have to ask for at your health insurance. Till January 1 the spoken books are on audio tapes which you can listen in your walkman for example. This new system however is some kind of a CD or DVD, so you can't use your walkman anymore. That's why they invented this whole new device. It not only just plays de CD/DVD, but you can also adjust the speed, you can go from chapter to chapter and even from page to page. You can of course put it in a MP3-player, but then when you stop reading/listening and you want to go on next time you have to search where you were. With this daisy-player you don't need to search, when you stop you bookmark it and the next time it will start where you stopped automatically.
Well first of all; my health insurance didn't know anything from a daisy-player, they had never ever heard of it. I had to call at least 4 times till they finally could tell me I had to ask for one through my gp. So I called my gp and explained it to him, no problem he will write a request/application-form. A few weeks later I get a letter from my health insurance that my request for the daisy-player was denied 'because of no valid medical indication'. I got this letter on Tuesday October 14th. So I called Stivor, this is a foundation who agreed all this with the government, all libraries and all health insurances. They asked if I wanted to sent them a copy of the rejection and my appeal. They gather all these things to see if they can arrange something. The next lines is my appeal:
A few months ago I got an audio tape from my library with the notification that I should request for a so-called daisy-player at my health insurance, because all libraries go over to this system at January 1, 2004. All this in cooperation with Stivor, the government, all libraries and health insurances. It appeared that my gp had to put in a request for me and he did.
However today I received your decision that you denied it due to 'no valid medical indication' and so I appeal to this.
I want to point out that you took over among others my hospital bed, notebook, bedside table and special mattress from my previous health insurance due to the same (not) medical indication.
I listen to spoken books for some years now, because due to severe ME/CFIDS I have some kind of dyslexia through which the letters start dancing in front of my eyes within a few minutes which obstructs reading for me. Also due to severe ME/CFIDS and FM I have severe muscle weakness and so it's very hard for me to hold a book. I also have problems concentrating and also this obstructs me enormous from reading a book. Because I also have MCS, I am allergic to paper and ink and as you probably will understand, this makes reading a book impossible. The MCS is proven by a regular DNA-bloodwork. It appears I have 1 gene missing and 1 doesn't work very well through which my body can't process chemicals like perfume, ink, exhaust fumes, additives etc. very well.
Since young age I really enjoy reading. You could always find me in the library.
Due to my illness however I haven't read for years till I heard of spoken books. I called such a library and they accepted me and so I get spoken books from them for some years now. On average I listen 1 book per week which is about 1,5 hours reading a day. I anyhow always listen before I go to sleep. This because it works relaxing to me and so it brings my cramped muscles a bit to rest through which I fall quicker asleep and I also sleep better. So listening to spoken books isn't just recreation for me, but also good for my body (and mind).
Due to these illnesses I am fully bedridden since 1998; I can rarely leave the house, I can rarely have a visitor or have a phone-call. The only pleasures I still have (can do) is watching TV or a movie, my notebook for social contacts through e-mail and listen to spoken books. So I would find it really awful if you would take away this pleasure and so I hope you want to review your decision and will approve me a daisy-player.

So I sent a copy of this letter to Stivor, but also to SPD in case I need more help. (SPD is an organization here in Holland who help you for free with stuff like that.) I should now get an answer from my health insurance within 10 weeks, so now I can't do more but wait and hope.

Yesterday, Wednesday 15 October, we also got a letter from a company when they could come get my hospital bed, special mattress etc.! It appeared they had gotten an order from my previous health insurance. So we called that health insurance company and told them we weren't a member of them anymore since over a year and that my current health insurance has taken everything over from them. They will now check this. Luckily I can keep my hospital bed etc till then and I am very happy about that, because I wouldn't know what to do when they took all this away from me. But anyway, it is a misunderstanding and hopefully it will be solved quickly.

And then we have the fuss about my notebook which I have in use. Originally it's from my previous health insurance, but as we went to our current health insurance they took it over together with my hospital bed etc. My notebook is broke and so we sent it back to the firm we got it from. After they had fixed it, they sent the bill to our former health insurance and that's how we got a letter from them to pick up everything because we weren't insured anymore by them. So we contacted that firm from the notebook and with our current health insurance. We had to sent the bill of the notebook to our health insurance and then they would fix it, because they indeed had taken over the notebook from our previous health insurance. This is still going on, but if it's correct we shouldn't get any problems with that anymore. However I still haven't got my notebook back, I will get it once my health insurance has paid the bill.

This plus what I wrote at the part about vitamin B12 is all what happened the past few days.
A lot of organizing and stress in a few days time. This sort of things however do let me realize that I am definitely not in shape to go to work. Unfortunately all that fuss leads to a relapse.
Plus in November, next month, I have to call again for an examination if I can keep my hours of care (PGB). Because of everything that has happened the past days I thought of it again and honestly I am not looking forward to it at all... also because all the savings from the government. Luckily I get disability for 5 years till the end of 2008, that is if I will not be examined much earlier by the new plans of the government and will be thrown out anyway.

October 2003

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