KSS & work? UK mito contacts?

[Guest guest]

Hi all,

Rowland here in the UK. It's been a long while since I posted. I

thought it was about time I said hello again. If you don't remember

me, (the group has grown by a huge amount since I last visited), I

am now 40 years old (owch) and I have Kearns Sayre Syndrome,

diagnosed after biopsy in 1998.

Does anyone know of anybody with KSS who is still working full or

part-time? I ask because I haven't worked since 1999, (apart from 5

months in 2001), mainly because I was caring for my parents. Mum

died in 2002, and Dad last November. I now have to sell the family

home and think about how to support myself in the future. I would

work on web stuff/IT, at home, but it plays havoc with my eyes.

House prices are so high over here now, it's impossible to buy

anywhere. I wouldn't sell especially as I have lived here all my

life, but I have 3 half-sisters who have a claim on Dad's Will. Mind

you this is quite a big house to look after, so it would be better

to have somewhere smaller. Stress. Can do without it. Contesting the

Will? More stress.

Do any of you have contacts in the UK who have Mito, particularly

KSS? I made a few contacts a year or two ago, but there isn't a real

network here, well, there aren't many of us here I guess.

That's enough for the moment, I'll probably have some questions

about how folk look after their eyes, dry eye syndrome etc, but that

can be later.

Regards

Rowland

Bored, fed up, depressed and Mito (well what do you expect?)

NB: Due to budget cuts, the light at the end of the tunnel has been

turned off!

[Guest guest]

Rowland

I am sorry you are going through such a difficult time. Loss of a parent is

hard. I hope you take care of yourself while trying to get through this

difficult time.

laurie

>

> Reply-To:

> Date: Sun, 13 Jun 2004 00:03:43 -0000

> To:

> Subject: KSS & work? UK mito contacts?

>

> Hi all,

>

> Rowland here in the UK. It's been a long while since I posted. I

> thought it was about time I said hello again. If you don't remember

> me, (the group has grown by a huge amount since I last visited), I

> am now 40 years old (owch) and I have Kearns Sayre Syndrome,

> diagnosed after biopsy in 1998.

>

> Does anyone know of anybody with KSS who is still working full or

> part-time? I ask because I haven't worked since 1999, (apart from 5

> months in 2001), mainly because I was caring for my parents. Mum

> died in 2002, and Dad last November. I now have to sell the family

> home and think about how to support myself in the future. I would

> work on web stuff/IT, at home, but it plays havoc with my eyes.

>

> House prices are so high over here now, it's impossible to buy

> anywhere. I wouldn't sell especially as I have lived here all my

> life, but I have 3 half-sisters who have a claim on Dad's Will. Mind

> you this is quite a big house to look after, so it would be better

> to have somewhere smaller. Stress. Can do without it. Contesting the

> Will? More stress.

>

> Do any of you have contacts in the UK who have Mito, particularly

> KSS? I made a few contacts a year or two ago, but there isn't a real

> network here, well, there aren't many of us here I guess.

>

> That's enough for the moment, I'll probably have some questions

> about how folk look after their eyes, dry eye syndrome etc, but that

> can be later.

>

> Regards

> Rowland

>

> Bored, fed up, depressed and Mito (well what do you expect?)

>

> NB: Due to budget cuts, the light at the end of the tunnel has been

> turned off!

>

>

>

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