Re: Finally Diagnosed- Nerys

[Guest guest]

> Maybe when I get diagnosed......

Hi Nerys

thanks for the reply hon, have had PMT, and been offline for a week

as on top of everything else, both my car and my computer died on

Thursday. I was supposed to be assessed on Friday, and had to ring

with the lame sounding excuse that it was stuck in my computer! GRRR!

Finally got it all happening tonight, we had to clear C drive and

reinstall everything, what a pain!

> I can really relate to this with Rich. he has the same problem by

fitting in the undiagnosed box. It is so hard when people ask him

what is wrong when they see him in town in a wheelchair to say heh I

dunno.

**Yeah I can imagine he gets some strange reactions to that, as the

general pop. think that if there is something wrong, then you go to a

dr and he tells you what you have got and how to treat it LOL,

unfortunately it is rarely that simple.

He is scared of what the diagnosis will be and doesn't want to know

in some ways but other ways it would help us. We would be able to get

on a pension which we can't at the mo coz doesn't have a diagnosis,

and maybe they could give him something for the pain, so I can

understand how you feel.

**So isnt he on anything for pain at all?? That is pretty shocking,

what are they doing for him at the moment, what kind of specialist is

he seeing, and are they getting anywhere with this????

And at the same time he doesn't want to see another doctor get

another test and be told it is all in his head.

**Yeah, I can relate to this. My GP is the only one who has ever

suggested that I was imagining my symptoms (apart from the one who

told me I needed psychological help, and would end up having a

phantom pregnancy, if I kept kidding myself that I was pregnant, as I

was definatly not pregnant! Trouble was, my " phantom pregnancy " is

now an 11 yr old pubescent girl!!!)I went down to the Immunologist

last week, and he is writing to my GP and sending some information

cause in his words " the man needs educating " and he said " give him

one last chance, if his attitiude isnt better after he gets my letter

then change GP's " LMAO, I think I actually like this Dr for a

change!!!!!!! Not sure if he is any good yet though.\

> I am so sorry to hear u are having another flare *hugs* Whats

happening about your uni assessment that is so stupid they won't give

you an extension.

**They have decided that I am too sick to be at Uni, and are

distressed that I keep getting HD's as they can't kick me out with

good marks. They are aware that I am sick, as I have many documents

to prove it, however they find it difficult that I cannot stand for

long periods of time, and chemical exposure is not on, so the

darkroom is out, I cannot focus my eyes anymore as they are so dry

that my vision fluctuates daily and dramatically due to dry patches

causing fragmentation of the light rays, so camera work is out, and I

am doing a major in photography LOL!!!!

Also I had to take 4 months of earlier this year, when my son had

surgery, so they have had to bend the rules for me. I will not bore

you with all the details, however this year has been one thing after

another, if I was them I would be sick of me also! Heck, I am sick of

me!!

Jai's symptoms are also flaring up again, so seems as though the

surgery didn't fix him like we thought so this has been a bad couple

of weeks.

Hope u can sort something out.

> How did the appt with the immunologist go?

**not sure, feeling confused as usual, seems I have a very

overreactive immune system (no kidding) that is starting to attack

stuff it should no better than to mess with LOL.

> I hope things are looking up a bit hon,

*Thanks Nerys, fill me in on what is happening at your end of this

wide brown one :-)

Take care

:-)