LupusMCTD

Welcome everyone in search of support & information of Lupus & MCTD

Maria
  • Female
  • Portland, OR
  • United States
Share 

Maria's Friends

Maria's Groups

 

Maria's Page

Gifts Received

Gift

Maria has not received any gifts yet

Give Maria a Gift

Latest Activity

on Sunday
Hey Mandy, This is a pretty handy site to locate some trials by area and you can sign up with them to be notified of studies to come. Wishing you the best~ Maria http://www.centerwatch.com/
December 2
MLWT/Maria's comment: "Thanks to all who checked in on this discussion and especially to those who participated (that's you Jessica and Genivieve!.) Sara, you're a great sport for being here and I hope you will continue to check in on this thread~…
November 30
Jessica's offers: "Thank you maria, I had a great holiday, and hope you all did as well. :) And thank you and Sara for this discussion, and sharing her book with us."
November 30
That’s a great question – and I actually started to expound on my travel limitations in my last response, but figured perhaps it would come up later in our discussions. So thank you for asking! First, I’ll mention that when my disease was active, t…
November 30
November 25
MLWT (Maria)'s response to G.R.: "Genivieve, what an absolutely perfect thing to share on this holiday weekend...thank you! Those moments where we can forget about "survivng" and spend them simply "being" is truly something to be grateful for. I k…
November 25
G.R. responding to "celebrating": "About celebrating with lupus - Yes, it did sound strange to my own ears when I said it out loud for the first time but it has become my life philosophy. I wasn't diagnosed for two years after lupus activated in m…
November 25
G.R. to Sara: "The information has really changed over the years but mostly it was my own experience that lead me to believe a lupus diagnosis was the same as a death sentence. My aunt died from lupus and her life was truly miserable for the last f…
November 25
Sara's response to Jessica: "That's great news!! Effective doctor's appointments literally leave me feeling exhilarated. I'm just so happy when my doctor and I connect on the issues brought up during the appointment...I'm sure you feel the same. An…
November 25
Jessica to Sara: "Ok, so I had my rheum appt today, and for the first time since the first appt it went well. I think having just finished the book and thinking through the section on communication and the part on doctors helped a bunch. Thank you!…
November 25
Sara's response to G.R: "I would be thrilled to answer any questions or comments you might have. And there's no rush to purchase a copy of the book - it will always be there. No worries! When you are ready, be sure to order from my website - www.de
November 25
You know - Wonder Woman has always been my fav DC super heroine! At that moment, when I thought she had disappeared for me also, I stopped myself cold. If you think about it, going through all that you do and still remaining such a powerful force i…
November 24
Maria added a blog post
With the recent passing of Lucy Cook, the inspiration behind the Beatles song "Lucy In The Sky With Diamonds" and fellow lupus patient, there has been news that John Lennon's son, Julian Lennon, will be teaming up with songwriter James Scott Cook on…
November 24
G R: "Great conversation. I'll be looking for you book soon (can't afford to buy right now). I'm celebrating 15 years of living with lupus this year. I say celebrating because when I received my diagonsis 13 years ago, I thought I was getting a deat…
November 23
Question from Maria (MLWT): “Sara , I particularly liked your fifth chapter on communication. You cover some of the biggest issues when it comes to knowing the why, who, when and how's on talking with others about what it is like living with lupus…
November 20

Profile Information

Your Blog or Website
http://mylifeworkstoday.com

Maria's Photos

Loading…

Maria's Blog

Maria

Beatle Heir Making Good on Lupus "Help"

With the recent passing of Lucy Cook, the inspiration behind the Beatles song "Lucy In The Sky With Diamonds" and fellow lupus patient, there has been news that John Lennon's son, Julian Lennon, will be teaming up with songwriter James Scott Cook on behalf of raising lupus awareness here in the Us and the UK.

The following LFA article is listed below that tells more about the artists and their commitment to not only this friend, but to also offer her another legacy to have… Continue

Posted on November 24, 2009 at 2:18pm —

Maria

When it rains...

In my 'younger days' (I'm 46, but talk like I'm 90-just bear with me), those ups and downs were exciting because I knew I would bounce back. These days, there's a little less bounce in this gal - physically and emotionally. Aging is only one part of that, though. Living with a condition that is so full of surprises all it's own is a whole 'nother ballgame. I think that the constant guardedness that I feel in monitoring my flares hampers my ability to be more emotionally ready to handle life in g… Continue

Posted on September 22, 2009 at 11:11am — 1 Comment

Maria

Which way is Wonderland, Alice?

"Alice:
It was much pleasanter at home, when one wasn't always growing larger and smaller, and being ordered about by mice and rabbits." - from Alice in Wonderland, by Lewis Carroll

I'm back from my Germany excursion with my family and have been trying to get my feet firmly planted on the ground. I've been tripping up a lot, though, because I'm noticing some hesitation in going back to what used to represent 'home' before I left.

The quote listed above from Alice in Wonderland only fits for me… Continue

Posted on July 27, 2009 at 11:20am —

Maria

Well, I'm embarrassed...

I have been completely negligent in keeping up with all of the networks I signed up for - not only that, but I didn't even make a note to remind myself that I signed up for this community. So, when asked for my password, I was completely lost as to what it was. It just now occurred to me that Ning uses the same one for all the communities we belong to. Old news for most - new news for a bonehead like me.

So, now that I realize I am indeed signed up here - I want to thank a few of you who took a… Continue

Posted on June 28, 2009 at 1:42pm —

Comment Wall (6 comments)

You need to be a member of LupusMCTD to add comments!

Join this Ning Network

At 11:06am on December 13, 2009, 3sisters said…
Hey Maria! Wishing you and your family a wonderful Christmas season!

At 9:56am on August 5, 2009, Kathy said…
Wishing you a pain free week!

At 6:42pm on July 18, 2009, 3sisters said…
I was just thinking about you on your vacation. I sure do hope that your family is having a blast!
I hope that your raynauds isn't flaring too bad over there ;) And! Right back at you with the "keeping me motivated" comment. We're all links in the chain, Kim
At 5:09pm on June 28, 2009, 3sisters said…

Hi Maria, I hope that you are doing well and it's good to see you on here networking and kicking up more Lupus Admin dust!
At 11:44am on June 28, 2009, myjoy520 said…
SHOWING YOU SOME LOVE MY SWEETAngel Codes For MySpace

Angel MySpace Codes & MySpace images

Codes

At 9:29pm on March 8, 2009, Kimber said…
Friends Pictures, Images and Photos
 
 

"Mother Site" www.LupusMCTD.com will remain open till 07/20011

www.LupusMCTD.com will remain open due to the loving generosity of www.Coffeenole.com
 

© 2009   Created by Kathy on Ning.   Create a Ning Network!

Badges  |  Report an Issue  |  Privacy  |  Terms of Service

Sign in to chat!