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I have now had 1 month private nursing and I like it a lot. Okay, it is exhausting that someone is always here because you talk to each other, but it did a lot of good to me mentally. I want to live again, I absolutely don't want to leave my cats alone and so I picked up my live again. The future is still unsure, but I think that I got more chance now I got the private nursing backing me up and assisting me.
I am now waiting for a so-called fokus-apartment. A fokus-apartment is an apartment adjusted for disabled people who want and can live independently , but still need ADL care. Before you are allowed for a fokus-apartment you must suffice 2 requirements: you have to be socially independent and you must need at least 5 hours till max. 30 hours of ADL care a week. ADL care means stuff like; help with showering/bed-washes, help getting dressed, help with transfers, help going to the toilet, hand over water/food etc. It's your choice when and if you want to be washed and if you need something you push a button and someone comes to help you. I think this is the perfect spot for me, also as for social contacts.
I don't make it living alone in this house with barely 1,5 hours PGB of ADL care a day and a I don't like to be in a nursing home, so that only leaves Fokus. In a fokus-apartment I however will have more trouble with my MCS and EA I think, but I have no other choice. So I hope there will soon be an open spot for me, but on the other hand it can also take years. I don't really dare to think about what if it takes years, because how must I do it all those years with barely 2,5 hours PGB a day (including housekeeping)! I even wrote to the papers in hope they can do something, but unfortunately no-one was interested.

Thanks to my MEE-consultant I am at this moment on the waiting list for a fokus-apartment. Today, Tuesday 26 October, the doctor came to examine me. Together with my team leader from the private nursing we already had put on paper what kind of help I need and how many hours a day/week. Because I often suffer from epileptic seizures (lately I had 3 in 2-3 weeks time due to all the stress and organizing) and I then of course need more care, we delibaretly stayed under the max of 30 hours ADL-care a week and so we came out at 24.5 hours a week - 3.5 hours a day. The doctor first wants to ask some information at my gp and then we just have to hope he will make a positive statement. His advice goes to CVZ and if they approve only then I am really on the waiting list... so nothing is sure yet.

Of course we told dr. Tisscher about the new situation. My parents have had a personal conversation with him, also because I am again that sick. He advised several tests which meanwhile have taken place, namely a genetic blood test in America and a blood-, urine- and faeces-test here in the Netherlands.
Not all tests are in yet, but it appears that among others they couldn't detect any vitamin C in my blood and also the ascorbine acid which leaves your body through urine is much too low compared to what it must be. Furthermore I got among others a deficiency of taurin, amino acids, glutathione, glycin and a large mould load.
First of all I had to start taking vitamin C 1500mg immediately and an amino acid complex. Also the molybdenum was changed into 3 capsules by awakening and the choline & inositol 3x 4 capsules a day. From choline & inositol I really notice that I get a little bit of more energy and every little bit is at least something. The molybdenum makes that I react a bit less severe to chemicals. This is it for now, because dr. Tisscher first wants to see how I react to this and if it does anything good for me.
In August my blood was also checked again for my thyroid and this time the values showed that my thyroid has started to work again. The value is still too low, but at least higher then the previous time and this is a good sign. In a few months I will be checked again.
My mother luckily got me back eating again. For months I have only eaten liquid porridge or a bit of soup, because I was for almost anything allergic and because I again could barely swallow. Bit by bit I could tolerate more and could eat a bit. We had to really carefully build it up with for example 1 pea, a half bean and the next week 2 pea's, 1 bean etc. I still don't have much choice of food, but at least I eat again. Now I eat for example a few crackers with goat cheese and some hony cake and as diner for example fish with carrots. I still can't tolerate rice, potatoes and stuff.

Since some days/a week I am finally doing a bit better and I got the feeling that there is a light ascending line. I think this is mainly because I am now really finished with my relation (the past months Henk has said and done so much that he has totally destroyed my love for him and my trust in him)and because all the fuss as of organizing (transferring the phone-bill to my name, same for electricity, water etc.) is finally almost done. I will be glad when I am in a fokus-apartment, so I then can really start all over.

October 2004 part 2

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