INTRODUCTIONS

Hi Sue,

Nice to meet you!! I am very sorry to hear about the loss of you sister and aunt.

What part of PA are you from? I'm from Philly. I was just diagnosed in April 2008. I'm so glad you decided to join us. This is a wonderful site and the people are great and supportive. It is a unique family!

Looking forward to getting to know you....

Hello and wellcome

Its nice to see you here and i know you can had alot to this

wonderfull family

Take care
Just me
RAY

Hello Sue (do I know you from somewhere ???)

All I can say is ditto to everything posted above - this is a really friendly forum and as Ray and kind others mentioned, a wonderful lupus family.

Just for the information of others here, Sue was one of the first people to contact me and offer support when I started out on that bike trip around America - and this was when she had more important lupus issues to deal with, as opposed to worrying about a silly Aussie out there on a bike. She's a wonderful lupus advocate.

Welcome again Sue - you'll enjoy the ride here!

Geoff

G'Day everyone.....

I am Jenny and I have been directed here by Geoff. I stumbled upon him via the Augie March web site after watching Rage over the weekend!!!

I am 48, (almost 49 ) and was diagnosed with SLE in 1992 but the renal bloke feels I have had it (dormant) since 1982. I had a very severe kidney infection twice in three weeks and biopsy results showed Lupus involvement. Nothing was said of that at the time !!!!

Anyway, I think it all flared up during my third pregnancy in 1990-91 as I had wandering joint pain etc. Since then I have been diagnosed with ITP, Raynauds, Sjogrens, and more recently( Monday of this week) Fibromyalgia. I have had heaps of treatments for the ITP but have been resistant to all of them......I had Danazol in 1997-98 but it shot my BP and Liver Functions through the roof so came off that, high dose steroids worked but as the dose was reduced, so my counts fell, I had a splenectomy in 2000, Intragam (IVIG), Dapsone and more recently, Mab Thera (Rituxan) all to no avail. My only things to fall back on now are chemo and experimental drugs.

I have had trouble keeping my iron stores at a reasonable so have had a few doses of IV iron......Ferrisig, I came out in hives two days after....a GP said at the time it was unrelated to the Ferrisig but when I saw the Nephrologist he said it was a definite reaction as some people won't react until a day or two after the IV. Not to have that again. I had Venofer in May last year and that was OK. Had a second dose in August and would you believe I sat there, had the entire IV Infusion and just before they were about to disconnect the lines, I had a wonderfully entertaining anaphylactic reaction that ALMOST saw me in ICU on a ventilator. No more Venofer!!! I have the dubious honour of being the only person to have this reactions at the Big Banana Land Hospital....and they are big enough to be dishing out LOTS of it. So...you have a star amongst you !!! ROFL

I am separated from my husband of 25 years and am with the most wonderful man in all of the world. We will marry just before Christmas. He is so supportive of all of this even though it all scares the cr*p out of him. He is terrified of losing me to it but I am not about to let that happen.

I have 4 kidlets....a son, 22, a daughter, 20, a son 18 (recently ranked 10th in Australia in the schoolboys Coxed Quad Scull.....Just had to throw that in !!! ) and a daughter 15 who has just become a Mum to the most beautiful baby girl, Kiara-Rose. She is 3 1/2 weeks old........

Thats my novel for the evening. Sorry to bore you but I hope I can help in some small way.....especially if your Lupus affects your blood like it has mine.

It must be one of the cr*ppiest things to have because no-one can give you a real plan of attack because no-one knows where it will strike next.........

We just have to band together and keep each other from falling in the deep dark hole that is always close by.

Thanks heaps to Maz and the others who gave the forum life......May it live a long time like all of us....

Hi Jenny:

Welcome - so very nice to meet you!

You sure have had you share of illnesses. And, please don't ever think you are a bore - we are here to share our stories and problems and joys with each other.

I am so happy to hear that you have a supportive partner and some wonderful children. These things keep us positive and make us stronger to fight this disease.

Once again, welcome - I know you are going to like it here.

Hang in there!

Hi Jenny,

Welcome ! So glad to have you join our group! I look forward to getting to know you.

Melissa

Jenny,

The same goes here with a big wellcome , from the yardman

Ray

Hi Jenny,

It's very nice to "meet" you and thank you for sharing your life with us!! It is just terrible that your condition was ignored back then. Sounds like you have a good man and great kids - congratulations on being a "Grandma"!!!

Hi Jenny & a Big Welcome!

It's a small world!

For the info of others from other parts around the world, Jenny lives in Coffs Harbour, sixty miles down the road from me here in Australia.

It's a Banana growing area right on the east coast - and there actually is a tourist attraction called "The Big Banana"... So don't worry about the Big Banana references!!!

A while ago, I noticed the Australian band, Augie March, had released a song titled, "Lupus." I posted a message on their site as I wondered if it had anything to do with the disease - probably not - but their music is really good.

So Jenny sees the video on a great late-night music program we have here called Rage - visits the Augie March website, sees my post, and here we are!

Welcome again Jenny, and I'm sure you'll find so much support here. It's such a pleasure to visit a friendly forum and one where you're treated as part of the family - without the stress!

Best Wishes as Always,
Geoff.
(PS... I'm closing in on 40 Jenny... Is it okay to still listen to JJJ and watch Rage?)

Hi Jenny,

It's nice to Welcome another Aussie to the family. You've certainly had quite a few experiences due to this lovely disease that brings us all together! I look forward to sharing with you. I haven't been to Coffs Harbour but I understand it is very beautiful, I am in Mt Gambier SA home of the Blue Lake!

The people on this board a very caring, understanding and full of info, they have helped me through some very dark days and when I had no way of connecting with Lupus sufferers in my own country they welcomed me with open arms, they have helped with this website and it wouldn't still be going without them, so I can't take all the credit for it! I'm so glad Geoff is getting word out there that we are here, I know there must be other sufferers out there who need support, so let's hope we keep growing!

I look forward to chatting and exchanging info with you.

Take Care
Love and Hugs
xxxMaz

Hi everyone and THANKS SO MUCH for the wonderful welcomes !!! :)Yep, this Lupus deal really does make changes to our lives, doesn't it?

I think it is SO great to have an Aussie based forum where we can all
get together and moan, groan, support, laugh cry and hopefully, give
each other heaps!! Ummmm as in joke with one another and have a good
laugh. If we haven't got somewhere we can do that safely then it is a
sad world.

Don, my Fiance, tells me I am strong.....I don't believe him, you just
have to do what you have to do, if you get knocked over then you just
pick yourself up, brush off the dirt and keep going. It's the only
thing we CAN do.....

I know we all have family and friends but it is only in a place like
this where we can really pour it all out because YOU are the only ones
who really know how it all feels and how it all goes.....

Geoff, TRIPLE J is the ONLY radio station to listen to.....blow these new pop bands. Give me REAL music!!!! Don doesn't like Triple J...he listens to Star FM... LOL blerk blerk!!!!
AND I am on the other side of 40....so you are OK there. You don't
frizzle up when that birthday comes and goes..... LOL LOL LOL

Well, I have forgotten to tell you of my latest exciting
development.....My Rheum told me on Monday that he feels that my 'all
over' pain has a component of Lupus....joint wise but the rest is
Fibro. *Jenny jumps up and down, claps her hands in sheer delight* I am
now on Lyrica to help 're-set' the pain centre. He explained that
because it has been bombarded with lots of pain messages, it has
lowered its resistance (sort of) so is feeling a bit
overwhelmed.....(aren't we all?? LOL). This will help it to build up
its 'resistance' to those messages and in turn, increase my pain
tolerance levels.....NO that does not mean I can be like Arnie
Schwarzeneggar and am TUFF!!!! It means I can just tolerate MY pain
messages better and have a life again......

Is there an easy way to post a pic? I have tried doing it but got stuck on the upload bit....couldn't see where I had to join the upload mob

Anyway, have to scat and take K9 (Vacuum cleaner) for a run!!!!

Thanks heaps again....

Jenny.

Geoff I will be in Grafton on Sunday for Olivers SGHAS Regatta....wanna meet??

Jenny, enjoying your posts, looking forward to getting to know you.
Glad you joined our lupie family.

Monica

Monica..
Do you mean Lupie or LOOPY???? As in Ga Ga.....!!!????

Jenny,

LOL! I know I fit both descriptions!!

Monica

I am more the second !!! LOL LOL