Connect with Other II Week Participants

Do you wish to connect with other participants of Invisible Illness Week? If so, we invite you to join the Invisible Illness Week GROUP in the Sunroom social network of Rest Ministries.

During the week while 4 seminars are happening each day, this is where we will also send you if you want to ask more questions of listeners on a particular seminar topic, if you have questions for the speakers that were not answered during the seminar, etc.

We are asking our speakers to sign in and check to see if anyone needs any additional information. If our speakers have handouts, this is where they will post a link to them.

The Rest Ministries social network, The Sunroom, has over 1300 participants and is a Christian environment for those with chronic illness. We understand that during Invisible Illness Week some of those involved may have different faiths or not have a religious preference. We ask that everyone be respectful of one another. If you do not wish to participate after Invisible Illness Week you can delete your membership.

Another option is to leave comments at the Blog Talk Radio web site where other listeners or the speakers can connect with you.

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R U on MySpace? Add us as a Friend & Tell Others

Are you on MySpace? Yes, we know a lot of people have moved over to Facebook but there are still millions of people on MySpace, many of them teenagers or your adults and we would love to have them know about Invisible Illness Week and especially the seminar with Naomi Kingery on Being a Teenager with a Chronic Illness.

Our web page over at MySpace is www.myspace.com/invisibleillnessweek Be sure to click “add to friends” and invite your friends to join us too. It’s one more way to reach some people who we would otherwise not reach.

And if you are on MySpace, be sure to fill out our meme “30 Things and post it on your blog at MySpace and even announce it on your bulletin feature.

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Get Ready By Testing Your Computer Speakers

Invisible Illness Week starts 9/14 at 9AM Pacific time in the USA. You will log onto the web site here at Blog Talk Radio.

…and if a program is currently LIVE it will start playing through your speakers.

You can also to listen to the workshops any time at www.blogtalkradio.com/invisibleillnessconf or you can download them from itunes onto your ipod. Just search “invisible illness podcast.”

Now is a great time to make sure your speakers are working!

The only thing that you will need are a pair of speakers connected to your computer! We recommend going to our programs last year that are archived at Blog Talk Radio and clicking on a few programs to see if your speakers are working.

I have logged on to Blog Talk Radio but I am not hearing anything. I can’t get it to work. What do I do?

First, don’t panic. All programs are recorded so it will be there later. Secondly, here is the help section from BlogTalkRadio.com . Make sure your speakers are also plugged in and the volume on your computer is turned up (Start>Control panel> -then look for something that is Audio/Volume, etc)

We have found the support/help at Blog Talk Radio to be very good in helping you find what may be wrong in case you cannot hear the program.

Their blog says

Visit the BlogTalkRadio Help Center – There are two great places to learn more about BlogTalkRadio and how to make it work to your advantage. The first is the BlogTalkRadio Learning Center located on the main BTR site. Included are tutorials, FAQs, screencasts and more, to help make your experience with us as simple as possible. The BlogTalkRadio Help Center, located on the BlogTalkRadio Blog, is a work in progress listing blog posts offering tips and ideas for a positive experience.

Worth noting: Lastly, we have room for 4 callers to call in to the show. You can actually listen to the show this way, but we also want to keep the lines open for callers after the workshop. So you can call to listen, but you may get bumped.

ALSO SEE: FAQ About the Conference | Overview of Conference

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

____________

*Source: Chronic Care in America: A 21st Century Challenge Revised

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30 Things About My Invisible Illness You May Not Know

We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

THEN… post a COMMENT BELOW with the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!

You can see my answers here (Lisa)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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DID YOU FILL OUT THE MEME ABOVE? If so, tell us where to find your answers in the comments below and by listing your blog, FB page, whatever, you will automatically be entered to win a prize! We are selecting 2 prize winners Saturday 9/5.

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Let’s Blog for Our Cause

Whether you have a blog or not, you can help us blog for Invisible Illness Week. Here are ways we need you and your stories!

If you don’t have a blog:

• You are still welcome to submit a “blog post” and be a “guest blogger” here at the Invisible Illness Week web site. We recommend reading some of our past blogger’s posts for ideas, but we are happy to consider anything of interest to those with invisible illness. We’d love to hear your reflections, ideas, stories, and more.

If you do have a blog:

• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Be a host for our founder’s Blog Tour (More information coming soon but you can sign up here now if you want. Details will be emailed to you). Lisa will have different interviews in text format that you commit to posting on a certain day. Do you know friends who blog who may be interested? We’d love to spread the word about II Week all through the blogosphere of many illnesses, from cancer to autism, migraines to arthritis, celiac disease to other rare disease.
• Submit your blog post in July for an August edition of Grand Rounds, the biggest (and first) medical blog carnival online. (Read more about this here.)
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog if you want including our 2009 Invisible Illness Week logo.

Thank you for your help! We really couldn’t do it without you!

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25 Illness Facts in 25 Days Via Twitter

Would you like to share some surprising facts about Invisible Illness Week?

We’ve found some we think you will like!

May 16-June 19th we are doing 25 illness fact tweets in 25 (business) days. [Get them here] This is a great way to share some misconceptions about illness, pain, depression and more. You can follow us on Twitter and then add “RT” at the beginning (that means you are retweeting it) and @invisibleillwk. That way people know the source where you found it and they can sign up for it themselves.

At the end of the 25 days we will choose a winner from those who participated all 25 days (hint: if you can’t keep up you may want to consider a service like Hootesuite.com where you can post Twitter in advance.)

You are free to share these anywhere, including Twitter, your blog, Facebook, etc. Just be sure to add RT @invisibleillwk to the beginning of any post.

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Statistics – Invisible Illness

WHO HAS AN INVISIBLE ILLNESS?

• Nearly 1 in 2 Americans (133 million) has a chronic condition. (Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). “Chronic Conditions: Making the Case for Ongoing Care”.)
• By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.
• That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. (ibid)
• Sixty percent are between the ages of 18 and 64 (ibid)
• 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases (The Growing Burden of Chronic Disease in American, Public Heal Reports / May–June 2004 / Volume 119, Gerard Anderson, PhD)
• In the United States 4 in 5health care dollars (78%) are spent on behalf of people with chronic conditions (The Growing Burden of Chronic Disease in American, Public Health Reports, MayJune 2004 Volume 119 Gerard Anderson, PhD)

WHAT ABOUT INVISIBLE ILLNESS?

Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

HOW DID YOU GET THIS STATISTIC?

We did our best to take the statistics that are available by the U.S. Department of Commerce, 1997, p. 1

• Over 100 million people in the U.S. have a chronic illness;
• 20.6 percent of the population, about 54 million people, have some level of disability;
• 9.9 percent or 26 million people had a severe disability
• 1.8 million used a wheelchair
• 5.2 million used a cane, crutches, or a walker
• So that is less than 6% who have a visible illness.
• There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

• 26 million persons were considered to have a severe disability;
• yet, only 7 million persons used a visible device for mobility.
• Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
• In other words, 73% of Americans with severe disabilities do not use such devices.
• Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

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How YOU Can Make a Difference

There are lots of ways to get involved in National Invisible Chronic Illness Awareness Week. In fact, just spreading the word that such a week exists seems to be therapeutic to some of us who are tired of hearing, “Are you still sick?”

We are always updating our web site under the category What to Do – How to Help, but if you are looking for a fast list, here are some things you can do that will all help us a lot! Most have links with more details if it’s not self-explanatory.

Bloggers or Writers

• Write a blog post for our web site as a guest blogger. It can be something fresh or something you have posted before.
• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog.

Do You Twitter?

• Follow us @invisibleillwk
• Retweet our tweets to let more people know about II Week
• Use the hashtag #iiwk10 when tweeting
• Tweet out our 20 Things to Say to a Chronically Ill Person and 20 Things to NOT Say to a Chronically Ill Person
  
• Twitter 25 facts about illness in 25 days
  
• Get a Twibbon for your profile photo

Are You on Facebook?

• Join our cause & tell your friends and family The easy address to rememberis http://www.InvisibleIllnessOnFacebook.com
• Whatever you see on our web site that you like… scroll down to the share button and share it on Facebook. It’s easy and helps more than practically anything else you can do to help!
• Ask your friends to join the cause.
• Give a donation to the cause (We are aiming for $1900 to help us cover costs.)

Pray!

• We have a prayer group jut for the week – join us if you’d like.

Do You Have a Web Site?

• How to Put II Week Blog on Your Site
• Add our button to your site!

Buy Some Goodies to Help us Financially and Also Spread the Word

• We have some great II Week items to help you share about your passion for the cause.

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