INTRODUCTIONS

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Re: INTRODUCTIONS

Post by californiacat on Thu Sep 25, 2008 4:07 am

Hi Findingflowers,
It is GREAT to see you here!!!! flower We even have an icon designed just for you!!!Happy Birthday and welcome to the boards....I hope you find them to be supportive and helpful.Take care and I look forward to seeing you around here.
Warmly, Barbara cheers

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Re: INTRODUCTIONS

Post by Guest on Thu Sep 25, 2008 4:33 am

Hi Findingflowers,

Glad to have you here and HAPPY BIRTHDAY TO YOU!! I'm happy to hear your lupus is mostly under control and look forward to chatting with you when you get back. Welcome!

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Re: INTRODUCTIONS

Post by Poppy on Thu Sep 25, 2008 4:37 am

Hi Findingflowers:

Welcome, Welcome & Happy Birthday!! So nice to have a familiar member join us! jocolor
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Re: INTRODUCTIONS

Post by findingflowers on Thu Sep 25, 2008 2:37 pm

Thanks for all the birthday wishes and such a warm welcome. I can't wait to jump in when I get back.
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Re: INTRODUCTIONS

Post by renbailey on Thu Sep 25, 2008 4:08 pm

Hello,
My name is Renee, aka renbailey, diagnosed 20 years ago with RA, 16 years ago Lupus SLE, 12 years ago, Reynauds, 6 mos. migraines and it just keeps getting better! Been through vasculitis, pleuressy (sp), periocarditis, shingles 3x's I've had all bones removed from toes replaced with screws, total shoulder replacement due to avascular necrosis, just had knuckle replacement due to severe deformity from RA in my right hand (will have left hand done in Dec), just recently spent the summer in and out of the hospital with severe migraines, been Spinal tapped, MRI'd, CAT Scanned, etc. for migraines, put on Topamax, whew, and I have experienced all of the other "stuff" in between! I celebrated my 45th birthday in September!
I am happy that you have started this forum, it is so helpful to be able to talk to others who UNDERSTAND! A positive attitude and being able to laugh at oneself is one way to not go CRAZY! Support is so important! Very Happy

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Re: INTRODUCTIONS

Post by Poppy on Thu Sep 25, 2008 5:45 pm

Hi Renee:

Welcome to our boards. It sounds like you sure have had a lot to deal with over the years. I hope you find this place one of much support and understanding.

BTW - Happy Birthday!!

Be well -and keep posting. Smile
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Re: INTRODUCTIONS

Post by socalmonica on Thu Sep 25, 2008 5:54 pm

Welcome Finding Flowers and Happy Birthday! Glad to have you here! Monica

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Re: INTRODUCTIONS

Post by socalmonica on Thu Sep 25, 2008 5:58 pm

YAH! Renee! Glad you joined! And Happy belated birthday!! Looking forward to chatting with you more!!! Hope you get some relief soon from those nasty migraines. Take Care Girl!!

Monica

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Re: INTRODUCTIONS

Post by californiacat on Thu Sep 25, 2008 9:38 pm

Welcome Renee,

Wow....you have been through A LOT!!!!You are a real inspiration and I am so glad you are here. cheers I sure hope things get a bit easier for you and that your headaches lessen.Please keep us posted ......I sure hope the Topomax helps.Also, Happy Belated Birthday; may this year be a healthier one for you!!!I look forward to getting to know you here on the boards.Take care my new friend and again, WELCOME!!!!May you feel at home here with the rest of us "living with lupus."
Warmly, Barbara I love you

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Re: INTRODUCTIONS

Post by yardman417 on Fri Sep 26, 2008 12:00 am

Hello Findingflowers

Just wanted to welcome you also and wish you a late HAPPY BIRTHDAY.


Hello, Renee

The same goes for you too. Smile

flower from the yardman
Take care
Ray
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Re: INTRODUCTIONS

Post by Guest on Fri Sep 26, 2008 3:10 am

Hi Renee,

It's nice to "meet" you and boy have you been thru alot for 45 years young - Belated Happy Birthday!! It's good to know inspite of all that, you have a sense of humor. I hope your migraines go away soon and you have some relief. Welcome to the group!!

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Re: INTRODUCTIONS

Post by maidmaz on Fri Sep 26, 2008 5:12 am

Hi Renee,

Welcome to the Boards! Happy Belated Birthday bom It's sounds like you will have lots of advice and support to offer "thanks" to your own life experiences Wink ! I'm very happy you joined, just curious how did you find us Question Not that it matters, it's good to know that the message is getting around that we are here cheers

I look forward to "chatting" with you!

Take Care
Love and Hugs
xxxMaz I love you
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I've finally ridden into town!

Post by geoff on Thu Feb 19, 2009 12:31 pm

Hi Everyone!

I'm sure a few of our lupus warriors would be aware of me, but here's a little background info for those who don't know me.

I'm living with lupus in Australia. I was diagnosed with cutaneous lupus in 2003 after cycling across Australia. But the sun didn't affect me, though stress did. However, I wasn't suffering like millions with SLE lupus.

So I cycled 9018 miles / 14,429 kms around America to raise awareness for lupus, whilst representing The Lupus Foundation of America and The Alliance for Lupus Research.

I'm now writing about my journey and I'm passionate about raising awareness for lupus worldwide.

Hence my worldwide lupus site:
The Wide World of Lupus
http://thewideworldoflupus.blogspot.com/

A nice, stress-free site like this can only be a bonus for all!

As always,
Geoff Thomas
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Re: INTRODUCTIONS

Post by maidmaz on Thu Feb 19, 2009 11:07 pm

Hi Geoff,

Glad you joined! Hope to see you around lots!

Take Care
xxxMaz
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Re: INTRODUCTIONS

Post by geoff on Tue Feb 24, 2009 10:35 am

Thanks Maz & to all,

It's pleasure to be here!

Just let me know if I can be of any help...

Regards as Always,
Geoff
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Hello to All!

Post by Lupiebin on Sun Mar 08, 2009 4:01 am

Hello Everyone!

I was excited to learn about this site and hope to get to know all of you, and learn and share about Lupus. Knowing you have friends to lean on, no matter how far away, is important in coping and understanding.

I suppose I should introduce myself-my name is Sue and I'm from Pennsylvania, USA and I was dx with Lupus in 1998. Along with SLE I also have Fibromyalgia, Hashimoto Thyroiditis, Raynaud's, Migraines, Neuropathy, Asthma, Vitamin D deficiency, High Blood Pressure, the lovely GERD and most likely something I forgot, ubt you know how that Lupus Fog gets so thick somedays!

I lost my sister in Feb. of 2007 to complication of Lupus, and I had a great aunt who also died of the disease-so I'm familiar with all it's ugly sides-yet there's more to learn every day and every patient is different.

I know a few of you in here already and look forward to talking with everyone soon!

THANK YOU FOR THS SITE!!! Very Happy




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Re: INTRODUCTIONS

Post by maidmaz on Sun Mar 08, 2009 10:38 am

Hi Lupiebin,

Welcome to our "family", I'm glad you joined. It sounds like you have had a lot of experience with Lupus and everything that goes with it!

I hope to here from you lots, I'm sure you have lots of advice and experiences to share with us.

My condolonces on the loss of your Sister and Aunt to this rotten disease.

Take Care
Love and Hugs
xxxMaz I love you
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Re: INTRODUCTIONS

Post by Poppy on Sun Mar 08, 2009 6:27 pm

Hi Lupiebin:

Welcome and very nice to meet you!

You seem to have a lot of experience with SLE and other problems and I know you will be a big help to all of us.

Giving support to others and living life everyday the best we can is the name of the game here. We all need a little TLC from time to time.

I, too, am sorry that lupus has been such a burden to your family members as well as yourself.

You are among friends here - we are so happy you joined us. Very Happy
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Re: INTRODUCTIONS

Post by socalmonica on Sun Mar 08, 2009 6:58 pm

Welcome Lupiebin! As the others have said, so sorry to hear about your family but I am looking forward to getting to know you. This is a great forum and we are certainly a family oriented group here. Glad you joined.

Monica

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Re: INTRODUCTIONS

Post by Rileysmom on Mon Mar 09, 2009 12:40 am

Hi Lupiebin,

Welcome! I too am sorry to hear about your sister and aunt, you have had your share of issues with lupus. I look forward to getting to know you as we share experiences and issues.

Melissa

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Re: INTRODUCTIONS

Post by christines555 on Mon Mar 09, 2009 1:45 am

Hi Sue, Very Happy

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.... sunny

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Re: INTRODUCTIONS

Post by yardman417 on Tue Mar 10, 2009 12:08 am

Hello and wellcome Very Happy

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

wonderfull family Very Happy

Take care
flower Just me
RAY
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Re: INTRODUCTIONS

Post by geoff on Tue Mar 10, 2009 8:05 am

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

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
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Re: INTRODUCTIONS

Post by Jenny on Wed Mar 11, 2009 3:04 pm

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 affraid ) 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 !!!! Rolling Eyes

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 lol! lol! lol!

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 !!! bounce Very Happy bounce ) 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....
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Re: INTRODUCTIONS

Post by Poppy on Wed Mar 11, 2009 4:34 pm

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! I love you
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Re: INTRODUCTIONS

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