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Instead of Friday they came Tuesday for the face-mask, so I could enjoy it a bit longer and besides he didn’t need the mask earlier. In total I have borrowed the mask 2,5 weeks. Considering the fact we will buy one, even if my health insurance rejects my request, I could keep the helmet and the filters. We asked for the helmet, because he still smelled a lot and this way it could already de-smell.
As he came to get it he told us that the mask now goes to another MCS-patient. She by the way immediately bought the mask during the test-period as she noticed how much it helps her.
That weekend I got a letter from my health insurance; my request is declined, because the face-mask is not on the list of compensations. After some inquiry it appeared that we have very little chance when we appeal because there reason is legitimate. So we tried at ANGO (an organisation who gives money to disabled people when they need something; of course after checking their finances and what it costs what they need). My SPD-consultant was already working on this, because we already had suspected the rejection from my health insurance. Unfortunately ANGO rejected with the same reason and so we paid it ourselves with help of my parents, at last I need and especially if I want to go out some day. Of course I first have to improve a lot, because I am still upstairs and haven’t been downstairs anymore after that one time with that face-mask.
On Thursday 17 July they delivered the mask including 3 batteries and a couple filters. Unfortunately the motor-unit is brand new and so it stinks tremendously, by which I can’t use the mask for now.
On the previous pages I told about blood work, but each time I forget to tell you the results, so here they are.
In the beginning of May they draw some blood for stuff like vitamin B12, cholesterol and Hb. My Hb was normal for the first time ever I think. Probably due to the weekly vitamin B12 shots, because this increases my Hb… I have a chronic low Hb. Also my cholesterol was okay and this while I meanwhile don’t take any meds anymore for a year or so (familiar cholesterol impairment). My TSH however appeared immeasurable low and so Ft4 is also being checked and it appeared to be a bit too high (24.7). My gp wanted to check this again in a month to see what my thyroid did and so in June they draw some blood again. It again was not okay, but this time the thyroid works too slow (TSH 1.6 and Ft4 7.7). So in July it was checked again and again no good (TSH 6.7 and Ft4 8.6). considering the course (first too fast working thyroid and then too slow) I probably have had a sub acute thyroiditis and this exhausted my thyroid so now it barely works. Normally the thyroid starts working on its own within a couple of months to a max of a half year, if this doesn’t happen you have to use thyroid meds. The first half year you may not use meds, because then it can happen that your thyroid never will work again. That first half year the thyroid will only be checked and checked and checked. In august my thyroid will be checked again. If it still doesn’t work then I will have to use thyroid meds and probably for the rest of my life because then I would have Hashimoto (that is if I have understood it correct).
Meanwhile I have received my voice amplifiers; the hand amplifier and the headphone-amplifier. I have never thought that my health insurance would approve 2 voice amplifiers.
On June 14 I have fired my pgb-help (my carer). First of all because for a while now she doesn’t do her job as she should, I suspect she doesn’t want to do this anymore. And second because she started to neglect my MCS-rules more and more and so I got sicker and sicker and more sensitive to chemicals.
After some phone calls for information it appeared I could fire her on the spot due to neglecting my MCS-rules.
In that week of 14 June I were extremely busy with making phone-calls, writing letters and filling in forms. Actually I was much too ill for all this, but it had to be done because of her I got sicker and sicker and probably more sensitive to chemicals then I already were for the rest of my life. Henk had talked to her a few days after her discharge and she told him that she didn’t want to work anymore for some time now, but that she didn’t want to quite because she then wouldn’t receive any unemployment. She also didn’t dare to tell us and so she played it this way. I think it’s very mean of her, because due to her I now react (for the rest of my life?) even more severe to chemicals and to even more chemicals then before… yes, I am angry at her. She then said to Henk that she wouldn’t appeal, because she wanted it to be over as soon as possible.
July 2004 part 1 Next
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