*THIS SITE DEDICATED TO THE MEMORY OF NANCY ASBELL 1962 ~ 2012
"CELEBRATE THE DAY"

LUPUS Takes The Life Of A Dear Friend and Inspiration

April 30, 2012 ~ This morning Lupus and it's many complications took the life of Nancy Asbell.
Nancy and I crossed paths two years ago when I began a search for Musicians/Singers/Artists to take part in the Stay Strong CD Project.
I saw her you tube video performing "Mary Did You Know".

Since that day in December 2010 my life has been a better place. Nancy was one of the kindest most loving human beings I have had the pleasure of interacting with both personally and professionally. Her musical and artistic contributions helped make a dream of mine come true(Stay Strong A Musical Message Of Hope, the CD), for that I am truly forever grateful.  She wrote and sang three emotional, heartfelt songs and painted four beautiful works of art for use as the CD booklets.


She also painted cards and sent them to me which I love! Then she would periodically email me beautiful pieces she had done with her favorite inspirational phrase, "CELEBRATE THE DAY". I loved getting the little surprise gifts of her amazing talent.

I never got the chance to meet Nancy, but through our work together via phone calls, emails and Facebook messages I know in her I had a True Friend for life. I will greatly miss her words of inspiration from her blog, she called them "GRACE NOTES". Here is her last entry from that blog.

THURSDAY'S GRACE NOTES:
PLEASE READ! This is the most important Grace Notes that I have ever written.

"After falling out of my wheel chair on Monday left with even more wounds and a damaged and wounded left eye I was given the facts of my diagnosis
for the rest of my life due to my chronic wounds. I can not go to large populated events ever. My main heart breaker is church. In my powered wheel
chair I can go to a large store, like Publix as long as I do not get close to many other people at the time. No body can visit me at my home if they are
sick or have a family member that is sick.  I will be losing my house and, my car has been repossessed. 
But this is when the weird thing comes in. I am still "inappropriately happy" and still look forward to the next fun day. 
I still have my art , music, and marketing "job" and totally "work" from home. I still have people (yes even you)  and Jesus will never ever leave my side.  The most "horrible" things that I go through the more I can help
others because I have gone through them myself.
So,
I no longer celebrate the day I celebrate each minute.
So let's go out there and let's rock our world!
I love you all".
Nancy

NANCY'S BLOG

What I loved the most about Nancy was her honesty and willingness to open her life to others as to help them understand they are not alone in their fight against Lupus. That if you keep your faith and keep smiling through the pain all will be well. She touched and changed the lives of Lupus fighters around the world with her three simple words.
"CELEBRATE THE DAY"

I will miss you Nancy, rest in peace my dear friend.


WHAT IS LUPUS?



Many Have Heard The Word, But Few Know The Meaning

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from foreign substances, like bacteria and viruses.
With lupus, your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues and creates auto-antibodies ("auto" means "self") to attack and destroy healthy tissue. These auto-antibodies cause inflammation,
pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
Lupus can be mild or serious but should always be treated by a doctor.
With good medical care, most people with lupus can lead a full life.
 
TODAY THERE ARE MORE PEOPLE EFFECTED BY LUPUS
THAN BY AIDS, CEREBRAL PALSY, CYSTIC FIBROSIS
& MULTIPLE SCLEROSIS COMBINED!



LUPUS SUPPORT SERVICES 


 
SUPPORT GROUPS

Coping With Lupus? Join A Support Group - Or Start Your Own

From Jeri Jewett-Tennant, MPH

If you feel alone, like the only one who has to deal with the day-to-day issues of living with lupus, you might consider joining a support group to feel more connected to those that share your struggle.

A support group can be a gathering of family, friends, or persons with lupus or a combination of all three. Typically, the group gathers regularly to discuss issues surrounding their disease and provide mutual support and exchange coping skills. But the reasons people join support groups can vary greatly from individual to individual.

Some may look for a better understanding of their disease. Others will feel in crisis or are hoping for help with specific struggles – from caregiving to dealing with flares. They may be looking for advice on a particular subject or just want to be with people who are having similar experiences. The group provides that opportunity.

If you are interested in joining a support group, your first step might be to determine what is available in your area. You can do this a number of ways, including contacting your healthcare provider, contacting a local hospital and speaking with the patient advocate, or by using the Internet and other reference resources to determine what’s around.

If you discover that there isn’t a support group available, you might consider starting one. If you want to take on that challenge, here are some suggestions, tips and steps to get your group started and established.

Starting Your Own Support Group:

Starting a support group is challenging and requires a high level of commitment and responsibility, as it is up to you to get the group off the ground, recruit members, and organize meetings and events. Make sure you are ready for the responsibility.

Recruit Members:

So as to ease the work, find at least one other person who is just as dedicated as you are at making the group a success. Share the workload with that person. To find members in your area, consider reaching out to patient advocates, social workers familiar with lupus and lupus patients, physicians, counselors. You might also consider advertising your support group at the local library and other public arenas.

Plan, Plan, Plan:

Make sure, from the outset, that you want to be in charge of a support group and not just a member of a support group. More so, understand the reason why you want to start a group and what you hope your members will gain from gathering. Know what type of meeting will best meet your group’s needs – open discussion, social gatherings, formal speakers and programs, or a mix of all of the above?

Find a Place to Meet:

Not necessarily as hard as it sounds. Local libraries, government buildings, churches and schools might offer free meeting space. Healthcare facilities, like hospitals, might also be an option (and a source of speakers). Always keep accessibility in mind.

Time to Meet:

Your first meeting with your group will likely be a clerical one, as you and the members of you group get to know one another, discuss what your goals are, come up with a set date and time for future meetings, and determine what kind of structure you would like best (do you want a governing body, for example?).

Keep in Touch:

Make sure you communicate regularly with your members. One way to do this might be by through a newsletter, either via e-mail or printed out – depending, of course, on how big your group grows. For smaller groups, a note or e-mail that keeps everyone up-to-date and connected is probably the best policy.

SUPPORT GROUPS NORTH AMERICA

CANADA

Lupus Ontario Support Group Contacts, Meetings & Events

Toronto & GTA Region

Toronto West Support Group (Mississauga Area)
Email: wellness_group@hotmail.com

North Toronto Support Group
Cathy Ferren-Palmer, Support Group Leader
Email: lupusgroupinfo@aol.com
Wilma Duffin
Email: Wilma.duffin@3web.com

MEETING CALENDAR

Durham Support Group
Shannon Crawford, Support Group Leader
Laura Piccione
Phone: 1-877-240-1099
Email: durhamlupus@live.com
Web: www.durhamwalkforlupus.com

MEETING CALENDAR

Markham Support Group
Email: info@lupusontario.org
 
Downtown Toronto Support Group
Rowena Rodriguez
Email: info@lupusontario.org

Toronto Beaches Support Group
Melissa Herod
Email: melissafairywings@yahoo.ca
Phone: 647-588-3409
Meeting Calendar
Where: Community Centre 55
          97 Main Street
          Toronto, Ontario
When: Monday June 14, Sept 13, Oct 11, Nov 15
          Thursday July 8, August 12
@ 6:30 PM to 8:30 PM

Eastern Ontario Region

Lindsay Support Group
Stewart Stainton
Email: info@lupusontario.org

Ottawa Branch
David Boal
Email: David.boal@sympatico.ca

Ottawa Central Day Group
Wendy Kool
Email: wkool9264@rogers.com

Ottawa West End Evenings
Nancy Conners
Email: lupusottawawest@gmail.com

Central Ontario Region

Barrie Support Group
Marlene Burgess, Support Group Leader
Email: mnt52@rogers.com

Collingwood Support Group
Elizabeth Alvarez
Email: lupuscollingwood@hotmail.com

Norfolk County Support Group
Debby Field
Email: lupusnorfolk@gmail.com
         
Northern Ontario Region
 
Dryden Information Group
Randi Nielsen and Barbara Babcock
Email: lupusdryden@hotmail.com

Sudbury Branch
Brenda Seguin, President
Heather Knoll, Vice President
Email: hstenning@sympatico.ca

Sault Ste Marie Branch and Support Group
Ruth Tarvudd, Support Group Leader
Email: ssmlupus@tarvudd.com
Andrea Goral, Support Group Leader
Email: Tigerlily_20@hotmail.com

South Central Ontario Region
 
Hamilton Support Group
Anne Matheson
Email: annematheson@sympatico.ca

Next Meeting:
Wed 15th Sept, 2010 @ 7:00pm - 9:00pm
Bay Gardens Community Room
947 Rymal Road East
Hamilton, ON, L8W 3M2

MEETING CALENDAR
 
Western Ontario Region
 
Bolton Support Group
Heidi Nielsen
Email: boltonlupusgroup@yahoo.ca

Brantford
Diane Forbes
Email: forbesgd@execulink.com

Guelph
Jennifer Seberras
Email: jenn_seb@hotmail.com
Phone: 519-994-8435

Kitchener/Waterloo
Jason Baetz
Email: jbaetz@execulink.com
Rosemary Kropf
Email: rosemary_kropf@hotmail.com

MEETING CALENDAR

Ridgetown/Chatham Area
Cathy-Ferren Palmer
Email: lupusgroupinfo@aol.com

MEETING CALENDAR

Windsor
Kevin Stannard
Email: Kevin.stannard@sympatico.ca
 
Provincial Teen & Young Adult Support Group
 Jaclyn Law
Email: jaclynlaw@hotmail.com

SOURCE: Copyright 2009 Lupus Ontario

UNITED STATES of AMERICA

LUPUS FOUNDATION OF AMERICA

LFA CHAPTER LOCATIONS
Please Call The Chapter Nearest To Your City Or Visit Their Website To Find Support Groups In Your Area

LUPUS FOUNDATION OF NEW ENGLAND

MASSACHUSSETTS     NEW HAMPSHIRE

Area support groups meet on a regular basis by professionally trained facilitators where people can discuss lupus, new treatment and strategies for living well with the disease.

If you would like to start a support group in your area please call Jenny Reyes Thomas, Administration and Programs Manager at 508-872-5200.

Info@lupusne.org

CONNECTICUT CHILDREN'S MEDICAL CENTER
HOSTS TEEN LUPUS SUPPORT GROUP

WHEN: 1st Wednesday of Each Month
WHERE: Connecticut Children's Medical Center
Location is 2L (Specialty Medicine Conference Room) at CCMC
282 Washington Street, Hartford, CT 06106
CONTACT: Maria Sanzo 860-545-9390

CHICAGO APOSTOLIC CHURCH OF GOD HOSTS
"Living Life" With LUPUS SUPPORT GROUP

TIME: 12 Noon Til 2PM
WHEN: First Saturday Of Every Month
WHERE: Apostolic Church of God
6320 S. Dorchester
Chicago, Il. 60637
Email: llw_Lupus@yahoo.com

NEW HANOVER COUNTY PUBLIC LIBRARY HOSTS
Wilmington Area Lupus Support Group

TIME: 6-7:15pm
WHEN: Third Tuesday of Each Month Beginning January 18, 2011
WHERE: New Hanover County Public Library, Northeast Branch
1241 Military Cutoff Road
Wilmington, NC. 28405
Contact: Tammy Scott For More Information @ wilmingtonlupusgroup@gmail.com

WILSON MEDICAL CENTER HOSTS
Wilson County Lupus Support Group-BUTTERFLIES
  
TIME: 4-5:30pm
WHEN: 3rd Saturday of Each Month
WHERE: Wilson Medical Center
1704 Tarboro St.
Wilson, NC. 27896
Contact Tameka Mitchell For More Information @ mitchell.tameka@yahoo.com

LUPUS SUPPORT WEBSITES

Support Groups, Online Support Groups, Blogs, Forums, And Social Networking Are All Ways To Share The Burden LUPUS Has Bestowed Upon You

Whether You Host Your Own, Are Active In Others, Or Just Visit A FaceBook Group

Please Share The Load And Know You Are Not Alone

28BELOW.ORG

DAILYSTRENGTH.ORG

HEALINGWELL.COM

LUPUSAWARENESSANDRESEARCH.NET

LUPUSAWARENESSANDRESEARCH.ORG

LUPUSNE.ORG

MDJUNCTION.COM

MEDHELP.ORG

MEVERSELUPUS.COM

MOLLYSFUND.ORG

MYPURPLEROSE.ORG

WEBMD.COM

WEHAVELUPUS.COM

 
MEDICAL RESOURCE WEBSITES



BECOME AWARE & INVOLVED IN YOUR OWN CARE
Communication Is Critical For A Successful Treatment Regimen



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