Tuesday, May 29, 2007
#146 - Clinical Trials
I just finished a phone interview/screening for a local clinical trial funded by the national Institute of Health. The researchers are going to be evaluating the effects lupus has on cognition.
If I am accepted into this trial, I will be going through a medical examination, bloodwork, neuropsychological testing, psychological interview, MRI and EEG.
I will post more information as it becomes available.
If you would like to learn more about lupus clinical trials...
or if you are considering participating in lupus research...
check out the Lupus Research Institute link below:
Lupus Clinical Trials
Special Thanks to Kathy at Lupus and Mixed Connective Tissue Disorders - Index for providing the heads up on this information!
Wednesday, May 23, 2007
#145 - Shayner: Another Angel Watching Over Us
On May 9th, 2007, we lost, yet, another dear friend from the AOL Lupus Support community.
My dear friend, LuAnne, knew Shayner well.
Here are Lu's words about Shayner:
Shayner
"Spread love everywhere you go. Let no one ever come to you without leaving happier."
Mother Teresa
Thank you Shayner for being a friend, you will be missed.
My dear friend, LuAnne, knew Shayner well.
Here are Lu's words about Shayner:
Shayner
"Spread love everywhere you go. Let no one ever come to you without leaving happier."
Mother Teresa
Thank you Shayner for being a friend, you will be missed.
Tuesday, May 22, 2007
#144 - Deluged! More Financial Resource Links
I think we could all get together and write VOLUMES about how the US healthcare system has let us down!
Many thanks to all who contributed even MORE informational links about finding financial resources!
Here they are:
FROM: Kathy
Regulatory Barriers Database (HUD)
http://www.huduser.org/rbc/search/rbcresults.asp?query=+AND+TopicID+in+(9)&RecordsPerPage=10&Page=13
Rebates across the USA
http://www.pathnet.org/sp.asp?id=15648&f=2
FROM: Tina
The APS Foundation of America, Inc
has several links that can help: http://www.apsfa.org/links2.htm#catid29726
For Prescription Help: http://www.apsfa.org/links4.htm#catid52668
FROM: Gail
www.modestneeds.org
Rx Outreach, 1-800-769-3880
Partnership for Prescription Assistance 1 888-477-2669
Benefits Check-up
Christine Ostwinkle Foundation
A great site to check out regarding obtaining disability payments is www.disabilitysecrets.com
I will keep updateing as more information comes in. Thank you, again, to all of you who have contributed!
Loretta Kelly, MSW
Many thanks to all who contributed even MORE informational links about finding financial resources!
Here they are:
FROM: Kathy
Regulatory Barriers Database (HUD)
http://www.huduser.org/rbc/search/rbcresults.asp?query=+AND+TopicID+in+(9)&RecordsPerPage=10&Page=13
Rebates across the USA
http://www.pathnet.org/sp.asp?id=15648&f=2
FROM: Tina
The APS Foundation of America, Inc
has several links that can help: http://www.apsfa.org/links2.htm#catid29726
For Prescription Help: http://www.apsfa.org/links4.htm#catid52668
FROM: Gail
www.modestneeds.org
Rx Outreach, 1-800-769-3880
Partnership for Prescription Assistance 1 888-477-2669
Benefits Check-up
Christine Ostwinkle Foundation
A great site to check out regarding obtaining disability payments is www.disabilitysecrets.com
I will keep updateing as more information comes in. Thank you, again, to all of you who have contributed!
Loretta Kelly, MSW
Friday, May 18, 2007
#143 - An Evening of Love, Light, and Laughter
This article originated from the Lupus LA:
Welcome to Lupus LA
(Please visit the link for the original article and photos)
An Evening of Love, Light, and Laughter
Tuesday, May 8, 2007
Event recap information has not yet been entered.
Lupus LA Draws Star Power from Michael Chiklis, Paula Abdul for “Evening of Love, Light & Laughter”
Shawn Ryan and CCH Pounder of “The Shield” Honored
Lupus LA hosted its seventh annual “Evening of Love, Light and Laughter” gala to benefit lupus research on May 8, 2007, at the Beverly Hills Hotel. Actor Michael Chiklis, star of The Shield on FX, presented the 2007 Loop Award to the show’s Executive Producer, Shawn Ryan, for creating an ongoing storyline of a character living with lupus, and to the drama’s co-star, CCH Pounder, for her beautiful performance in that role. Suzanne Whang from NBC’s Las Vegas emceed the event and NBA veteran and FOX Sports host, John Salley, served as the guest auctioneer. Comedian Bobby Slayton performed his Vegas-style entertainment for the crowd.
Paula Abdul with honoree Kelly Stone
America’s favorite judge, Paula Abdul, came directly from an American Idol taping just in time to present the Medical Visionary Award to “The Amgen Family of Rheumatologists”— Brian Kotzin M.D., James Louie M.D., Judy Maddox M.D. and Debra Zack M.D. As a special surprise, Abdul added two American Idol tickets to the live auction. A walk-on appearance on The Shield was also auctioned off.
The evening also honored Kelly Stone, one of Lupus LA’s major supporters and sources of inspiration. She received the Michael Wayne Public Service Award from Gretchen Wayne. Gloriana DiCandia, age 15, who has lupus, was given the Spirit of Hope Award by actress Taraji P. Hensen.
Lupus LA thanks dinner chairs Michelle and Alan Kaye for their gracious leadership in making the night such a wonderful success.
Attendees included: Cathy Cahlin Ryan (The Shield), Benito Martinez (The Shield), Holly Robinson-Peete, Tiffany (recording artist), Sherri Shepherd (The View), Parminder Nagra (ER), Max Martini (The Unit), Goran Visnjic (ER), Walton Goggins (The Shield), Shondrella Avery (Napoleon Dynamite), Melissa Joan Hart, Bernie Brillstein, Ali Hillis (Must Love Dogs), Howie “D” Dorough, Shirly Brener (Employee of the Month), Scotti Thompson (NCIS), Rex Lee (Entourage), and Scott Grimes (ER).
Welcome to Lupus LA
(Please visit the link for the original article and photos)
An Evening of Love, Light, and Laughter
Tuesday, May 8, 2007
Event recap information has not yet been entered.
Lupus LA Draws Star Power from Michael Chiklis, Paula Abdul for “Evening of Love, Light & Laughter”
Shawn Ryan and CCH Pounder of “The Shield” Honored
Lupus LA hosted its seventh annual “Evening of Love, Light and Laughter” gala to benefit lupus research on May 8, 2007, at the Beverly Hills Hotel. Actor Michael Chiklis, star of The Shield on FX, presented the 2007 Loop Award to the show’s Executive Producer, Shawn Ryan, for creating an ongoing storyline of a character living with lupus, and to the drama’s co-star, CCH Pounder, for her beautiful performance in that role. Suzanne Whang from NBC’s Las Vegas emceed the event and NBA veteran and FOX Sports host, John Salley, served as the guest auctioneer. Comedian Bobby Slayton performed his Vegas-style entertainment for the crowd.
Paula Abdul with honoree Kelly Stone
America’s favorite judge, Paula Abdul, came directly from an American Idol taping just in time to present the Medical Visionary Award to “The Amgen Family of Rheumatologists”— Brian Kotzin M.D., James Louie M.D., Judy Maddox M.D. and Debra Zack M.D. As a special surprise, Abdul added two American Idol tickets to the live auction. A walk-on appearance on The Shield was also auctioned off.
The evening also honored Kelly Stone, one of Lupus LA’s major supporters and sources of inspiration. She received the Michael Wayne Public Service Award from Gretchen Wayne. Gloriana DiCandia, age 15, who has lupus, was given the Spirit of Hope Award by actress Taraji P. Hensen.
Lupus LA thanks dinner chairs Michelle and Alan Kaye for their gracious leadership in making the night such a wonderful success.
Attendees included: Cathy Cahlin Ryan (The Shield), Benito Martinez (The Shield), Holly Robinson-Peete, Tiffany (recording artist), Sherri Shepherd (The View), Parminder Nagra (ER), Max Martini (The Unit), Goran Visnjic (ER), Walton Goggins (The Shield), Shondrella Avery (Napoleon Dynamite), Melissa Joan Hart, Bernie Brillstein, Ali Hillis (Must Love Dogs), Howie “D” Dorough, Shirly Brener (Employee of the Month), Scotti Thompson (NCIS), Rex Lee (Entourage), and Scott Grimes (ER).
#142 - SICKO premieres June 29th!
Good News!
Filmaker and Advocate, Michael Moore, has completed his film about the United States health care system.
It is called "Sicko" and will open June 29th, 2007.
I was able to hear first hand news of this project at "An Evening with Michael Moore" at the Toronto International Film Festival this past September 2006. Michael Moore discussed the challenges in making an honest film about our health care system.
Health insurance companies began to refuse to provide coverage for his staff and crew.
It takes a LOT of people to make a movie and he had to make sure all of his employees were taken care of.
In spite of this...
he obviously has overcome this hurdle and many, many others thrown his way in the making of this documentary.
At the time, Michael Moore had to keep this project tightly under wraps.
You can read more about "Sicko" in the letter below:
"Sicko" Is Completed and We're Off to Cannes!
May 17, 2007
Friends,
It's a wrap! My new film, "Sicko," is all done and will have its world premiere this Saturday night at the Cannes Film Festival.
As with "Bowling for Columbine" and "Fahrenheit 9/11," we are honored to have been chosen by this prestigious festival to screen our work there.
My intention was to keep "Sicko" under wraps and show it to virtually no one before its premiere in Cannes. That is what I have done and, as you may have noticed if you are a recipient of my infrequent Internet letters, I have been very silent about what I've been up to. In part, that's because I was working very hard to complete the film. But my silence was also because I knew that the health care industry -- an industry which makes up more than 15 percent of our GDP -- was not going to like much of what they were going to see in this movie and I thought it best not to upset them any sooner than need be.
Well, going quietly to Cannes, I guess, was not to be. For some strange reason, on May 2nd the Bush administration initiated an action against me over how I obtained some of the content they believe is in my film. As none of them have actually seen the film (or so I hope!), they decided, unlike with "Fahrenheit 9/11," not to wait until the film was out of the gate and too far down the road to begin their attack.
Bush's Treasury Secretary, Henry Paulson, launched an investigation of a trip I took to Cuba to film scenes for the movie. These scenes involve a group of 9/11 rescue workers who are suffering from illnesses obtained from working down at Ground Zero. They have received little or no help with their health care from the government. I do not want to give away what actually happens in the movie because I don't want to spoil it for you (although I'm sure you'll hear much about it after it unspools Saturday). Plus, our lawyers have advised me to say little at this point, as the film goes somewhere far scarier than "Cuba." Rest assured of one thing: no laws were broken. All I've done is violate the modern-day rule of journalism that says, "ask no questions of those in power or your luncheon privileges will be revoked."
This preemptive action taken by the Bush administration on the eve of the "Sicko" premiere in Cannes led our attorneys to fear for the safety of our film, noting that Secretary Paulson may try to claim that the content of the movie was obtained through a violation of the trade embargo that our country has against Cuba and the travel laws that prohibit average citizens of our free country from traveling to Cuba. (The law does not prohibit anyone from exercising their first amendment right of a free press and documentaries are protected works of journalism.)
I was floored when our lawyers told me this. "Are you saying they might actually confiscate our movie?" "Yes," was the answer. "These days, anything is possible. Even if there is just a 20 percent chance the government would seize our movie before Cannes, does anyone want to take that risk?"
Certainly not. So there we were last week, spiriting a duplicate master negative out of the country just so no one from the government would take it from us. (Seriously, I can't believe I just typed those words! Did I mention that I'm an American, and this is America and NO ONE should ever have to say they had to do such a thing?)
I mean, folks, I have just about had it. Investigating ME because I'm trying to help some 9/11 rescue workers our government has abandoned? Once again, up is down and black is white. There are only two people in need of an investigation and a trial, and the desire for this across America is so widespread you don't even need to see the one's smirk or hear the other's sneer to know who I am talking about.
But no, I'm the one who now has to hire lawyers and sneak my documentary out of the country just so people can see a friggin' movie. I mean, it's just a movie! What on earth could I have placed on celluloid that would require such a nonsensical action against me?
Ok. Scratch that.
Well, I'm on my way to Cannes right now, a copy of the movie in my bag. Don't feel too bad for me, I'll be in the south of France for a week! But then it's back to the U.S. for a number of premieres and benefits and then, finally, a chance for all of you to see this film that I have made. Circle June 29th on your calendar because that's when it opens in theaters everywhere across the country and Canada (for the rest of the world, it opens in the fall).
I can't wait for you to see it.
Yours,
Michael Moore
P.S. I will write more about what happens from Cannes. Stay tuned on my website, MichaelMoore.com.
---
Michael Moore at the Toronto Internation Film Festical, 2006m PHOTO: Jerry Kelly, 2006
Filmaker and Advocate, Michael Moore, has completed his film about the United States health care system.
It is called "Sicko" and will open June 29th, 2007.
I was able to hear first hand news of this project at "An Evening with Michael Moore" at the Toronto International Film Festival this past September 2006. Michael Moore discussed the challenges in making an honest film about our health care system.
Health insurance companies began to refuse to provide coverage for his staff and crew.
It takes a LOT of people to make a movie and he had to make sure all of his employees were taken care of.
In spite of this...
he obviously has overcome this hurdle and many, many others thrown his way in the making of this documentary.
At the time, Michael Moore had to keep this project tightly under wraps.
You can read more about "Sicko" in the letter below:
"Sicko" Is Completed and We're Off to Cannes!
May 17, 2007
Friends,
It's a wrap! My new film, "Sicko," is all done and will have its world premiere this Saturday night at the Cannes Film Festival.
As with "Bowling for Columbine" and "Fahrenheit 9/11," we are honored to have been chosen by this prestigious festival to screen our work there.
My intention was to keep "Sicko" under wraps and show it to virtually no one before its premiere in Cannes. That is what I have done and, as you may have noticed if you are a recipient of my infrequent Internet letters, I have been very silent about what I've been up to. In part, that's because I was working very hard to complete the film. But my silence was also because I knew that the health care industry -- an industry which makes up more than 15 percent of our GDP -- was not going to like much of what they were going to see in this movie and I thought it best not to upset them any sooner than need be.
Well, going quietly to Cannes, I guess, was not to be. For some strange reason, on May 2nd the Bush administration initiated an action against me over how I obtained some of the content they believe is in my film. As none of them have actually seen the film (or so I hope!), they decided, unlike with "Fahrenheit 9/11," not to wait until the film was out of the gate and too far down the road to begin their attack.
Bush's Treasury Secretary, Henry Paulson, launched an investigation of a trip I took to Cuba to film scenes for the movie. These scenes involve a group of 9/11 rescue workers who are suffering from illnesses obtained from working down at Ground Zero. They have received little or no help with their health care from the government. I do not want to give away what actually happens in the movie because I don't want to spoil it for you (although I'm sure you'll hear much about it after it unspools Saturday). Plus, our lawyers have advised me to say little at this point, as the film goes somewhere far scarier than "Cuba." Rest assured of one thing: no laws were broken. All I've done is violate the modern-day rule of journalism that says, "ask no questions of those in power or your luncheon privileges will be revoked."
This preemptive action taken by the Bush administration on the eve of the "Sicko" premiere in Cannes led our attorneys to fear for the safety of our film, noting that Secretary Paulson may try to claim that the content of the movie was obtained through a violation of the trade embargo that our country has against Cuba and the travel laws that prohibit average citizens of our free country from traveling to Cuba. (The law does not prohibit anyone from exercising their first amendment right of a free press and documentaries are protected works of journalism.)
I was floored when our lawyers told me this. "Are you saying they might actually confiscate our movie?" "Yes," was the answer. "These days, anything is possible. Even if there is just a 20 percent chance the government would seize our movie before Cannes, does anyone want to take that risk?"
Certainly not. So there we were last week, spiriting a duplicate master negative out of the country just so no one from the government would take it from us. (Seriously, I can't believe I just typed those words! Did I mention that I'm an American, and this is America and NO ONE should ever have to say they had to do such a thing?)
I mean, folks, I have just about had it. Investigating ME because I'm trying to help some 9/11 rescue workers our government has abandoned? Once again, up is down and black is white. There are only two people in need of an investigation and a trial, and the desire for this across America is so widespread you don't even need to see the one's smirk or hear the other's sneer to know who I am talking about.
But no, I'm the one who now has to hire lawyers and sneak my documentary out of the country just so people can see a friggin' movie. I mean, it's just a movie! What on earth could I have placed on celluloid that would require such a nonsensical action against me?
Ok. Scratch that.
Well, I'm on my way to Cannes right now, a copy of the movie in my bag. Don't feel too bad for me, I'll be in the south of France for a week! But then it's back to the U.S. for a number of premieres and benefits and then, finally, a chance for all of you to see this film that I have made. Circle June 29th on your calendar because that's when it opens in theaters everywhere across the country and Canada (for the rest of the world, it opens in the fall).
I can't wait for you to see it.
Yours,
Michael Moore
P.S. I will write more about what happens from Cannes. Stay tuned on my website, MichaelMoore.com.
---
Thursday, May 17, 2007
#141 - Lupus and Financial Challenges
How many of you out there have had to cope with overwhelming financial problems due to the upheavals caused by lupus?
Some of us find our financial resources drained by the extra costs from co-pays to medication to needing to hire extra help.
And some of us are walking a tightrope of crashing into a financial crisis by the breakdown of a car, or an unexpected expense.
And then there are those of us who have been hit even harder.
Patient Advocate offers links to many resources available in your area:
Money Matters
http://www.patientadvocate.org/report.php
Please leave feedback if you use any of the services listed. I would like to keep the information up to date and highlight resources that are truly helpful.
Thanks!
Loretta Kelly, M.S.W.
Some of us find our financial resources drained by the extra costs from co-pays to medication to needing to hire extra help.
And some of us are walking a tightrope of crashing into a financial crisis by the breakdown of a car, or an unexpected expense.
And then there are those of us who have been hit even harder.
Patient Advocate offers links to many resources available in your area:
Money Matters
http://www.patientadvocate.org/report.php
Please leave feedback if you use any of the services listed. I would like to keep the information up to date and highlight resources that are truly helpful.
Thanks!
Loretta Kelly, M.S.W.
#140 - Jennifer Hudson at 4th Annual Lupus of America Awards Gala
This press release was provided by the Lupus Foundation of America at www.lupus.org:
If you would like to view this article with the photos, please visit here:
LUPUS FOUNDATION OF AMERICA
More Photos Here:
LUPUS FOUNDATION OF AMERICA
Jennifer Hudson Thrills Audience at 4th Annual Lupus Foundation of America Awards Gala
May 10, 2007
Actor Malcolm-Jamal Warner served as Master Of Ceremonies for Event to Bring National Attention and Resources for Lupus
LFA Announced $3.5 Million in Contributions for Lupus Research and Education Programs
Jennifer Hudson wows the crowd at LFA's Fourth Annual Gala
(Washington, DC) 2006 Academy Award Winner for Best Supporting Actress, Jennifer Hudson, used her four-octave range to give a breath-taking performance for 550 guests attending the Fourth Annual Lupus Foundation of America (LFA) Awards Gala on May 9 in Washington, DC. Marjorie S. Susman, Chair of the LFA Board of Directors, announced that this and preceding Galas have raised more than $3.5 million to support lupus research and education programs.
Actor Malcolm-Jamal Warner was the Master of Ceremonies for the Gala which honored U.S. Senator Richard Durbin, (D-IL); the Will and Jada Smith Family Foundation; Lisa Price, founder and CEO of Carol’s Daughter Cosmetics; and H. Thomas Watkins, President & CEO of Human Genome Sciences, for their efforts to bring national attention and resources to lupus, a devastating and life-threatening disease affecting 1.5 million Americans and five million people worldwide.
Dr. Gary Gilkeson, Chair of the LFA Medical-Scientific Advisory Council, unveiled a portrait of the late Dr. Philip Whitcome, a distinguished molecular biologist and highly successful businessman, who bequeathed $2.5 million to the LFA in memory of his wife, Carla, who passed away from complications of lupus. Dr. Whitcome’s mother, Margaret, participated in the unveiling.
Malcolm-Jamal Warner is joined by Tomiko Fraser Hines
Among the guests were Lauren Nelson, Miss America 2007; Shilah Phillips, Miss Texas 2006 and First Runner-up for the Miss America 2007 pageant; Dr. Sheila Johnson, President and Managing Partner of the WNBA's Washington Mystics; and LFA spokespersons Tomiko Fraser Hines, actress, Maybelline spokesperson and International Ford Agency model; Mercedes Yvette, 2004 Runner-up, America’s Next Top Model, and Kelly Jean Drury, actress and model who appeared on General Hospital. Actors Will Smith and Jada Pinkett Smith accepted their award through a videotaped presentation.
Congressman John Dingell (D-MI) and Debbie Dingell, and Senator Richard Shelby (R-AL) and Dr. Annette Shelby were the 2007 Honorary Chairs. Senator Robert Bennett (R-UT), Congressman Kendrick Meek (D-FL) and Leslie Meek, Esq. were the Honorary Co-Chairs.
Lupus is a chronic disease in which the immune system attacks the body’s own tissue, causing disabling pain and damage to organs, such as the heart, lungs, kidneys and brain.
The Lupus Foundation of America is the nation’s leading nonprofit health agency dedicated to finding the causes and cure for lupus through programs of research, education and patient support.
If you would like to view this article with the photos, please visit here:
LUPUS FOUNDATION OF AMERICA
More Photos Here:
LUPUS FOUNDATION OF AMERICA
Jennifer Hudson Thrills Audience at 4th Annual Lupus Foundation of America Awards Gala
May 10, 2007
Actor Malcolm-Jamal Warner served as Master Of Ceremonies for Event to Bring National Attention and Resources for Lupus
LFA Announced $3.5 Million in Contributions for Lupus Research and Education Programs
Jennifer Hudson wows the crowd at LFA's Fourth Annual Gala
(Washington, DC) 2006 Academy Award Winner for Best Supporting Actress, Jennifer Hudson, used her four-octave range to give a breath-taking performance for 550 guests attending the Fourth Annual Lupus Foundation of America (LFA) Awards Gala on May 9 in Washington, DC. Marjorie S. Susman, Chair of the LFA Board of Directors, announced that this and preceding Galas have raised more than $3.5 million to support lupus research and education programs.
Actor Malcolm-Jamal Warner was the Master of Ceremonies for the Gala which honored U.S. Senator Richard Durbin, (D-IL); the Will and Jada Smith Family Foundation; Lisa Price, founder and CEO of Carol’s Daughter Cosmetics; and H. Thomas Watkins, President & CEO of Human Genome Sciences, for their efforts to bring national attention and resources to lupus, a devastating and life-threatening disease affecting 1.5 million Americans and five million people worldwide.
Dr. Gary Gilkeson, Chair of the LFA Medical-Scientific Advisory Council, unveiled a portrait of the late Dr. Philip Whitcome, a distinguished molecular biologist and highly successful businessman, who bequeathed $2.5 million to the LFA in memory of his wife, Carla, who passed away from complications of lupus. Dr. Whitcome’s mother, Margaret, participated in the unveiling.
Malcolm-Jamal Warner is joined by Tomiko Fraser Hines
Among the guests were Lauren Nelson, Miss America 2007; Shilah Phillips, Miss Texas 2006 and First Runner-up for the Miss America 2007 pageant; Dr. Sheila Johnson, President and Managing Partner of the WNBA's Washington Mystics; and LFA spokespersons Tomiko Fraser Hines, actress, Maybelline spokesperson and International Ford Agency model; Mercedes Yvette, 2004 Runner-up, America’s Next Top Model, and Kelly Jean Drury, actress and model who appeared on General Hospital. Actors Will Smith and Jada Pinkett Smith accepted their award through a videotaped presentation.
Congressman John Dingell (D-MI) and Debbie Dingell, and Senator Richard Shelby (R-AL) and Dr. Annette Shelby were the 2007 Honorary Chairs. Senator Robert Bennett (R-UT), Congressman Kendrick Meek (D-FL) and Leslie Meek, Esq. were the Honorary Co-Chairs.
Lupus is a chronic disease in which the immune system attacks the body’s own tissue, causing disabling pain and damage to organs, such as the heart, lungs, kidneys and brain.
The Lupus Foundation of America is the nation’s leading nonprofit health agency dedicated to finding the causes and cure for lupus through programs of research, education and patient support.
Tuesday, May 15, 2007
#139 - Lupus Self Care
Spring is here and summer time is just around the corner!
For those of us with lupus, it is easy to forget the basics about taking control of what you actually do have control over.
This is often a time for picnics, outings, vacations, and travel.
Make sure you are planful and put in enough time to rest up.
Here are some self-care basics from the Mayo Clinic:
Lupus: Self-care - MayoClinic.com
Please post your own tips for lupus (or any autoimmune disease) self-care in the comments below.
If you are a blogger, provide a link so readers can visit your site.
For those of us with lupus, it is easy to forget the basics about taking control of what you actually do have control over.
This is often a time for picnics, outings, vacations, and travel.
Make sure you are planful and put in enough time to rest up.
Here are some self-care basics from the Mayo Clinic:
Lupus: Self-care - MayoClinic.com
Please post your own tips for lupus (or any autoimmune disease) self-care in the comments below.
If you are a blogger, provide a link so readers can visit your site.
Friday, May 11, 2007
#138 - Mother's Day
I just wanted to stop by before the weekend to wish folks a blessed Mother's Day.
I wish comfort to those Mothers who are filled with grief during this time.
I wish peace to all those Mothers who hunger for serenity in their family.
I wish fulfillment to all Mothers who feel lost on the journey.
I wish joy for all Mothers who feel sorrow.
I wish contentment for all Mothers who are able to reap the fruits of having happy & healthy children.
I wish home, nourishment, and safety for Mothers who do not have these things for their children.
I express my profound gratitude to Mothers who have been brave enough to hope for a better future for their child by using adoption as an alternative. I wish that they may know that their babies are safe and loved.
I wish hope and comfort for Mothers who have grieved miscarriage.
I pray for Mothers who had to make choices beyond comprehension... that they may feel unconditional all embracing love.
I wish joy to all women who have been Mother to so many... bound together by love and not necessarily biology.
I wish comfort to those Mothers who are filled with grief during this time.
I wish peace to all those Mothers who hunger for serenity in their family.
I wish fulfillment to all Mothers who feel lost on the journey.
I wish joy for all Mothers who feel sorrow.
I wish contentment for all Mothers who are able to reap the fruits of having happy & healthy children.
I wish home, nourishment, and safety for Mothers who do not have these things for their children.
I express my profound gratitude to Mothers who have been brave enough to hope for a better future for their child by using adoption as an alternative. I wish that they may know that their babies are safe and loved.
I wish hope and comfort for Mothers who have grieved miscarriage.
I pray for Mothers who had to make choices beyond comprehension... that they may feel unconditional all embracing love.
I wish joy to all women who have been Mother to so many... bound together by love and not necessarily biology.
Thursday, May 10, 2007
#137 - World Lupus Day May 10
Today is World Lupus Awareness Day
Please visit the link below to learn more about today's planned events and how to spread the word:
Proclamation
The World Lupus Day Proclamation was first developed in 2004 when an international steering committee representing lupus organizations from 13 different nations met in Eaton, United Kingdom to organize the first observance of World Lupus Day. The Proclamation is a call to action for governments around the world to increase their financial support for lupus research, awareness and patient services.
Each year, the Steering Committee revises the Proclamation to reflect the emerging issues that people with lupus around the world must face every day. The Proclamation serves to give a single voice to all individuals affected by this devastating and debilitating chronic disease.
The World Lupus Day Proclamation
Please join the international lupus community in urging your government to adopt and issue the World Lupus Day Proclamation.
Whereas, lupus is an autoimmune disease that can cause severe damage to the tissue and organs in the body and, in some cases, death; and
Whereas, more than five million people worldwide suffer the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with lupus, the great majority of whom are women of childbearing age; and
Whereas, medical research efforts into lupus and the discovery of safer, more effective treatments for lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and
Whereas, many physicians worldwide are unaware of symptoms and health effects of lupus, causing people with lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and
Whereas, there is a deep, unmet need worldwide to educate and support individuals and families affected by lupus; and
Whereas, there is an urgent need to increase awareness in communities worldwide of the debilitating impact of lupus;
Now, Therefore, Be It Resolved that 10 May 2007 is hereby designated as World Lupus Day on which lupus organizations around the globe call for increases in public and private sector funding for medical research on lupus, targeted education programs for health professionals, patients and the public, and worldwide recognition of lupus as a significant public health issue.
Proclaimed This Day, 10 May 2007
Tuesday, May 08, 2007
#136 - Our Lupus Angels
Another AOL support friend has passed on.
wkatnhat/ very bad news - General Discussion - AOL Message Boards
We have lossed three people to lupus this year.
Melissa, Val, and now Kat.
I am angry, sad, confused...
and feeling a large burden of guilt.
I was very active in the AOL Lupus Board when I was desperately in need.
Newly diagnosed, quite isolated, and frightened...
I met beautiful people from all over who were coping with lupus too.
My memory is so bad now...
that I remember Kat being present, but I can not recall details.
She was there and that is good enough for me. She reached out, she offered support.
Some of our support group are quite vocal, and strong in character...
and there are the quiet ones who gently lift us up...
and the dear ones who pop in bringing a breath of fresh air, a spark of hope...
the ones who add drama to our lives...
like a rainbow, our personalities color the meeting of a diverse group of people joined together by lupus.
Kat was part of our beautiful rainbow.
I called the people on the AOL Lupus Board my "lupus angels".
Without my online friends, I do not think I would have recovered from the grief caused by losing so much, so quickly to lupus.
We have three angels now, quite literally.
And I feel the guilt, because as I have gotten better with coping... I strayed from the support group.
I have taken without giving back.
I need to return.
This entry is not about me, or feeling sorry about this situation, or whatever.
This IS about the need to return sevenfold with gratitude and joy...
all that we take in order to sustain us on this journey.
My profound sympathy to all of Kat's loved ones, and to all of those who were touched by her presence
From the Bible, Ecclesiastes III (King James Version):
3:1 To every thing there is a season, and a time to every purpose under the heaven:
3:2 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
3:3 A time to kill, and a time to heal; a time to break down, and a time to build up;
3:4 A time to weep, and a time to laugh; a time to mourn, and a time to dance;
3:5 A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
3:6 A time to get, and a time to lose; a time to keep, and a time to cast away;
3:7 A time to rend, and a time to sew; a time to keep silence, and a time to speak;
3:8 A time to love, and a time to hate; a time of war, and a time of peace.
wkatnhat/ very bad news - General Discussion - AOL Message Boards
We have lossed three people to lupus this year.
Melissa, Val, and now Kat.
I am angry, sad, confused...
and feeling a large burden of guilt.
I was very active in the AOL Lupus Board when I was desperately in need.
Newly diagnosed, quite isolated, and frightened...
I met beautiful people from all over who were coping with lupus too.
My memory is so bad now...
that I remember Kat being present, but I can not recall details.
She was there and that is good enough for me. She reached out, she offered support.
Some of our support group are quite vocal, and strong in character...
and there are the quiet ones who gently lift us up...
and the dear ones who pop in bringing a breath of fresh air, a spark of hope...
the ones who add drama to our lives...
like a rainbow, our personalities color the meeting of a diverse group of people joined together by lupus.
Kat was part of our beautiful rainbow.
I called the people on the AOL Lupus Board my "lupus angels".
Without my online friends, I do not think I would have recovered from the grief caused by losing so much, so quickly to lupus.
We have three angels now, quite literally.
And I feel the guilt, because as I have gotten better with coping... I strayed from the support group.
I have taken without giving back.
I need to return.
This entry is not about me, or feeling sorry about this situation, or whatever.
This IS about the need to return sevenfold with gratitude and joy...
all that we take in order to sustain us on this journey.
My profound sympathy to all of Kat's loved ones, and to all of those who were touched by her presence
From the Bible, Ecclesiastes III (King James Version):
3:1 To every thing there is a season, and a time to every purpose under the heaven:
3:2 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
3:3 A time to kill, and a time to heal; a time to break down, and a time to build up;
3:4 A time to weep, and a time to laugh; a time to mourn, and a time to dance;
3:5 A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
3:6 A time to get, and a time to lose; a time to keep, and a time to cast away;
3:7 A time to rend, and a time to sew; a time to keep silence, and a time to speak;
3:8 A time to love, and a time to hate; a time of war, and a time of peace.
Thursday, May 03, 2007
#135 - Women with Disabilities: Relationships
Here is an excellent article that summarizes the statistics on how women with disabilities manage compared to non-disabled women.
The article addresses both women who have been disabled since youth, and women who become later disabled while in a long-term relationship:
http://www.bcm.edu/crowd/national_study/RELATION.htm
The article addresses both women who have been disabled since youth, and women who become later disabled while in a long-term relationship:
http://www.bcm.edu/crowd/national_study/RELATION.htm
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