update on everything

I just thought that i would do a bit of an update since november last year!
The concert went extremely well and apart from having to learn how to use a new hearing aid AND a new FM system at the same time very very quickly within 2 days I thought it went quite well. Plus it was a fullhouse and totally sold out. The choir even made a profit something that hardly ever happens!

My husband and I were involved with our churchs nativity play on christmas eve 2010. I used my stand with the viola and there weren't too many glitches in the play and it was very successful. Jeff was also a soldier in the play itself as well as singing. We are looking at writing the 2011 nativity play and hoping the worship committee pick ours!

I am getting used to the new aids and FM system but find it has to be charged every night or else it runs out of batteries and unlike the old one it actually doesn't use AA ones so it has an internal battery however this being said it does charge rather more quickly :-) we also got a set top box for christmas and finally i have captions on some of the programs which is rather useful when the FM system decides to die quickly. Ive also discovered i can use Skype over the net by using the FM system to hear and the mic part of the headset to speak. So ive been chatting with a couple of friends from the UK rather than doing a typing chat.

My other big news is that i have completed my TAFE certificate 3 in disability studies finally after 4 years so i am very very very glad about that!

I am afraid health wise and services wise i am still waiting for answers and more help. We did manage to secure a respite package for my husband which is consumer directed which is fantastic but it is extremely limited and thats the point its supposed to be a break for Jeff not my primary agency but because i am still stuck with Dom Care and still do not have a diagnosis even after 2.5 years I am still not eligible for disability SA.

I am disgusted at the way that i have been treated by this agency and i wish there was another option. i have deteriorated so badly its not funny its scary and honestly i am hoping that the geneticist who ive only seen once last year and who i see again in january WILL get to the bottom of what is going on because all the neurologists are STILL arguing about psychogenic condition and its simply ridiculous. I have started seeing a psychologist and i possibly wrote in a earlier post that she wrote a letter stating that the diagnoses of conversion disorder psychosomatic disorder and facticious disorder are not only 3 different conditions which are impossible to have at the same time but also it states in the definition of them that ALL physical conditions MUST be ruled out FIRST well ah i think my drs kinda skipped that step cause they have not done that yet. I still think Mitochondrial disease is a real possibility and the geneticist is the ONLY specialist i have who is actually taking me seriously (other than the Neurophysio who always has and the psychologist) the first thing she said to me was I am worried about the degeneration and the progressiveness ah yeah well so are we!!!!! So why does this woman listen and no one else does? I have no idea but the apmt is now only 19 days away and i look forward to finding out the results of the tests she did.

The other thing about dom care is that I have several advocates all helping me to get what we both need so that is a really really good thing. I am hoping that this happens swiftly but somehow i doubt it. I got into the wheelchair clinic after 3 months wait and ive heard nothing. Ive heard from other PWD that it can take 2 years or more just to get a new wheelchair!!!! I really hope it is a lot sooner than that.

I dont know how others with disabilities cope but we are both struggling at the moment.

I will keep you updated with the progress of my disability and of my dream of teaching to PWD and forming an ensemble. Now that ive finished TAFE i will actually have more time to think about how it might happen. I do know that the first round of funding is due march 31st so im thinking of applying for the second round which is end of october there is an intermittent one so we will just have to see what happens.