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jola57
09-30-2009, 01:17 AM
Did anyone hear that the inspiration for Lennon's song Lucy O'Donnell passed away at 46 from Lupus?

Doug
09-30-2009, 01:19 AM
No. That's new to me. Auto-immune disease. Lupus is more difficult to deal with than WG, isn't it. Anyway, it always seems like people diagnosed with it suffer a great deal and have a harder time getting relief from the disease than many weggies do. Anyone more informed on this than me?

Sangye
09-30-2009, 01:44 AM
I saw that on the news yesterday, too. She was my age (well, I'll be 46 in December, but who's counting?). Lupus is like Wegs, in that it can be all over a country mile in severity and extent. Unlike Wegs, it does have a decent track record of being cured holistically if it's still in early stages. Basically, both diseases stink

Doug
09-30-2009, 01:48 AM
Thanks. I feel a kinship, then, with people who have it!:(

Sangye
09-30-2009, 01:52 AM
Since lupus affects millions of people, there's a lot of research done for drugs to help people with it. Wegener's doesn't get that kind of research, but many of the drugs used for lupus also help us. So in that way, we're indirect recipients of their research.

Doug
09-30-2009, 02:00 AM
Plasmapheresis came out of Muscular Dystrophy Association funded research. Count our blessings, eh? We may not be on the radar, but when you have something that has, at minimum, 108 symptoms, one or two sources of the symptoms might be similar or same as those of other diseases!:)

jola57
09-30-2009, 02:49 AM
108 symptoms. only?? Yes we benefit only I wish we were more on the med radar

Luce
09-30-2009, 05:29 AM
I (stupidly) thought this thread was so named in order to get my attention.

You have no idea how many (usually drunk) people have sung that to me, and asked if I knew the song was about LSD.... it gets old pretty quick.

Luce
AKA:
Lucy
Lucy in the sky with diamonds
Juicy Lucy
Lucy Goosey
Lucille (not my name)
Lucinda (also not my name)
Lucifer (just not fair!)

Sangye
09-30-2009, 05:34 AM
(LOL-- The last one did make me giggle.)

I hope you're doing okay, LUCE-- you've been on my mind lately. :)

Luce
09-30-2009, 05:44 AM
I'm fine thanks, sorry if I've worried anyone.
I'll update you a bit on the stuff that's been going on:

1) My Nan got moved to a "halfway house" today before being moved to a care home that specialises in dementia sufferers. She's slipping further and further out of the real world, despite the shingles having cleared up some time ago.

2) My partner and I have decided that we will not have a child just for the sake of ensuring that we have a good chance. We'll do it when we're good and ready and not before - and if it doesn't happen then we still have options. We have taken the first step into getting social housing accommodation to at least put us in a better financial situation.

3) The best news - we are looking at getting another bunny rabbit as company for Barley!

Sangye
09-30-2009, 05:49 AM
I'm so sorry to hear about your Nan. I've seen some evidence of severe infections stimulating brain changes like that. I'm glad that she'll be cared for by experienced people, and I hope it's a good facility.

I support you on your decision to wait for a child. (I'd support you either way!) You've got a lot on your plate.

VERY happy to hear about a buddy for Barley! You might check out local animal rescues. There are a lot of unwanted bunnies out there.

Luce
09-30-2009, 05:59 AM
It's very sad, but I think everyone is coming to terms with it. In our area there doesn't tend to be many state care home, they're mostly private and people like my nan are given grants and funding by the state to be housed there.

Thank you - it would be so unfair on the child if we rushed into something we weren't comfortable with. We've always said before I got ill that we'd just wait and see what happens, why change that philosophy because the odds have swung slightly the other way?

Barley came from a rescue centre so they will of course be the first place we look. However I do want a baby that we keep indoors this winter and make sure he gets both neutered and vaccinated, then we'll put him in a separate hutch in thhe spring and start the introductions. That way sexual feelings won't be involved and Barley shouldn't lose her dominance if the new guy is a bit smaller and younger.
I can't wait but won't rush it as I think we need to find the right boyfriend for Barley.

jola57
10-03-2009, 07:21 PM
Luce I am glad too that you are going to wait a bit before seriously thinking of a baby. Live your life a little together and then decide.