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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Chronically Ill Are Perfect Audience for Virtual Conference, September 14-18

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

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Chronically Ill Are Perfect Audience for Virtual Conference, September 14-18

Hard beds, traveling expenses, long walks to conference rooms, peers going overboard on the perfume, and extreme fatigue are predictably part of your average conference. For the chronically ill, however, these inconveniences oftentimes make attending an actual conference impossible. National Invisible Chronic Illness Awareness Week celebrates its seventh year, and with the power of social networking, 009’s “virtual” conference September 14-18, 2009 is sure to be a success.

“I can only leave the house once a week, twice if I am really lucky, so a weeklong conference is normally impossible for me,” says Juliann Krute who lives with Ehlers-Danlos Syndrome and many other illnesses. “Having a conference that I can attend—even if I am in too much pain to get out of bed—is fantastic!”

The conference will feature twenty live seminars via Blog Talk Radio that anyone around the globe can listen to LIVE or archived. The 2008 workshops have had over 12,000 listeners and are also available on iTunes.

Topics for 2009’s conference include:
• Applying and Winning Disability Assistance When You Are Chronically Ill
• Managing College with a Chronic Illness
• Find the Job You Desire and Can Do
• It’s OK to say NO: Building Healthy Boundaries
• Coping with Chronic Illness in Your Marriage

Guest speakers are some of the top chronic illness advocates online today including Jenni Prokopy of chronicababe.com; Rosalind Joffe of keepworkinggirlfriend.com; Maureen Pratt, author of Peace in the Storm, and Christine Miserandino of butyoudontlooksick.com. They are joined by.Kelly Rouba, former Ms. Wheelchair NJ 2007, and best-selling authors on marriage, Bill and Pam Farrel.

Invisible Illness Week was founded by and is sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill.

Lisa Copen, 40, founder of Rest Ministries and creator behind National Invisible Chronic Illness Awareness Week says, “Regardless of where one’s spiritual ties are, there is an fundamental human desire to feel understood, to feel like those you love have some idea about what you are going through.” Copen, who is explored this in her book Why Can’t I Make People Understand: Discovering the Validation Those With Chronic Illness Seek and Why says, “One of the most difficult adjustments to illness is that you feel life is passing you by and no one around you even realizes it. We hope through our conference we can provide a place where people find the true source of being validated in their pain, how to live joyfully despite their illness, and of course, we want to increase awareness about how many suffer silently. Like our theme says, ‘A Little Help Gives a Lot of Hope.’ It really does.”

For more details about the free conference and other resources visit www.invisibleillnessweek.com

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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

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*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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Submit a Guest Blog

We’ve heard lots of you say “I am going to submit a guest blog post” but there are not a lot of submissions coming in and we’re afraid they are all going to come at once. We’d love to hear from you.

Submit your guest blog post today.

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In Order To Appear Invisible, You Have To Be Invisible

I have, if only inadvertently, become very vocal about my illnesses (lupus and rheumatoid arthritis). When I started blogging 15 months ago, I never expected that I would become part of a virtual community of chronically ill people who are trying to raise awareness of the profound impact that illness has on patients, their families, and their friends.

I have made many friends this way, and while these alliances have become a cornerstone in helping me deal with my own illnesses, I find that I continue to do battle on a daily basis with the “outside” world, those in my immediate surroundings who are not chronically ill.

Here is an example:

Earlier this summer, I became acutely ill with a cough that I couldn’t shake. And it wasn’t until I was hacking up a lung that “normal” people started to take notice.

“Oh, are you sick,” they would ask. “You sound sick.”

And what I really felt like saying was, “I’m sick 100% of the time. This is just the 1% you’ve decided to notice.”

This is the exception rather than the rule.

The irony here is that it’s what was going on inside of me that matters. It wasn’t the fact that I was coughing up a lung (or at least sounded like I was). It was the fact that this occurred after going to the hospital for a doctor’s appointment, after riding the city bus. It is, in fact, the very invisible nature of my illnesses that were at play here. They had just decided to show themselves in a very visible, vocal way.

Those events wouldn’t cause “normal” people to get sick.

But if doctors haven’t been trained to look much deeper than giant, flashing tumors, why would we expect the rest of the world to? In many ways, illness is in the eye of the beholder.

My own mother refuses to see me as a “sick person.” But the truth is, these illnesses are my life. My life has become these illnesses. And for better or for worse, I live out each day, good or bad, because of these illnesses.

Yes, ignorance frustrates me. Because our world hasn’t been conditioned to believe in the possibility that young people can be sick – because this plays on our worst fears that the world is not a just, fair, or kind place – and that people in the prime of their lives can be struck down with no warning, with seemingly no reason, and lives can be forever changed, altered beyond comprehension.

And it also frustrates me that by virtue of that inability to understand, I am supposed to be strong, brave, resilient – any number of adjectives that describe youth and longevity. Yes, somehow, on the days when I am in so much pain that I can’t lift a half-gallon of milk to pour for my cereal, I am supposed to be strong and brave, and think that this is just some adolescent phase that I’ll grow out of?

But even for someone like me, who blogs about my illnesses, whose posts are fed through facebook, there are times when invisibility can be a good thing. When I travel to California in August, there is a very good chance that I will be wearing a mask on the plane.

I haven’t been on a plane in nearly seven years. And I’ve never had to wear a mask before. Anywhere. The thought fills me with dread – everyone is going to look and me and wonder what’s wrong with me. But given my susceptibility level, it seems like a prudent measure that I need to take.

It makes me realize that sometimes, invisibility is a luxury. The fact that I don’t have to wear illness on my sleeve all the time, while this tends to promote ignorance and unfeeling, also thwarts questions, long glances of sympathy and pity. It allows me to be in my own insular world of lupus and rheumatoid arthritis, while the rest of the world is kept at arms length, think that everything is just fine.

You don’t know what you’ve got ‘til it’s gone…

National Invisible Chronic Illness Awareness Week is important because no one is immune to illness – it can happen to anyone, anywhere, at any time – and by sharing our stories, we help to show that it is possible to live in the face of illness.

Leslie Rott is 23 years old. In April of 2008, at the age of 22, she was diagnosed with lupus and rheumatoid arthritis. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in Sociology at the U of M. She currently authors the blog Getting Closer To Myself, which chronicles her journey with chronic and invisible illness.

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Articles to Read

Whether you are looking for someone who cares and understands invisible illness or you simply want to read more about this topic, some wonderful articles are available for your reading.

Since some of these articles have been made available for us through the gift of others, we ask that you please read the footer at the end of each article regarding reprint/copyright information.

Do you have an article you’d like us to consider posting? Please email it to us with your bio and reprint considerations.

Coping with an Invisible Condition

What makes an illness or condition visible or invisible? Assistive devices, body appearance, and behavior tell others you are ill or disabled. Devices include canes, wheelchairs, walkers, crutches, braces. Most of these are used for mobility. Body appearance can be things like . . . by Dr. Brian Grady

50 Ways to Encourage a Chronically Ill Friend

Want to help but don’t know where to start? We all have those times we don’t have a clue what to say or what to do (like bring another casserole- gasp!) These are 50 ways reprinted from Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend. . .by Lisa Copen

When the Pain is Invisible

“But you look so good!” “I can tell you must be feeling better. You look great!” “I’m so glad you were able to come. Thank goodness you finally are getting some relief.” To a healthy person, none of these comments seem unusual or insincere. Our friends are simply trying to find the right thing to say. Of course, they really do believe that you must be feeling better or you wouldn’t be out of bed… by Lisa Copen

But They LOOK So Good!

Surprisingly, more than 125 million Americans have at least one chronic condition. Nearly half have more than one. An illness or injury is considered chronic, when it lasts a year or longer, limits activity and may require ongoing care… by Sherri Connell

Why Seeing is Not Always Believing
Has someone ever said to you, “You look great!” while inside you felt fatigued or were in profound pain? People who live with ongoing pain and chronic health challenges face such dilemmas every day. Since many ongoing symptoms often do not manifest outwardly, people sometimes have a difficult. . .By Carol Sveilich, MA. author of Just Fine: Unmasking Concealed Chronic Illness And Pain

Reinvent Your Dreams
Often when we are sidelined with pain and illness, we stop dreaming – about who we want to become, what we want to do, things we want to experience, how we want to impact the world. This often leads to a profound sense of loss, fear, frustration, and sometimes depression. We can become trapped and immobilized by not only our physical pain, but our emotional distress as well. By Joanna Wasmuth, founder of Harmony Coaching Group

6 Ways to Let Those with Chronically
Illness in Your Church Know You Care

Nearly 1 in 2 people in the U.S. have a chronic condition. If it’s not you, it’s someone sitting next to you. Too often, a chronic illness, such as fibromyalgia, or a chronic condition like back pain from a car accident, is invisible. Those who live with chronic illnesses do everything they can to look presentable, get to church, and sit through the service. But as someone with rheumatoid arthritis, as I stood during worship. . . By Lisa Copen

How Does Social Security Define “Disability” Anyway?

Have you ever wondered what the “definition” of disability is? I know you have…we all believe we know “who” is disabled and “who” is not. Heck, you can tell just by looking at a person! Doctors are usually certain they know whether their patients meet the “definition” of disabled… by Scott Davis, Esq.

When a Friend Has a Chronic Illness: What to Say How to Help

When a friend is diagnosed with a chronic illness the natural cycle of healing doesn’t take place. What do we say? Do we encourage her to remain hopeful? Chronic illness is permanent and often degenerative, requiring her to change nearly everything about her life. The emotions that accompany these changes in her life are often more difficult to cope with than the pain itself… by Lisa Copen

How Do I Make People Understand?

“I don’t understand why you won’t at least take his phone number; he’s a Christian and he specializes in herbal remedies. He could heal you and then you could share his success with everyone and that could be your ministry…” by Lisa Copen

When Friends Just Don’t Understand

As I hang up the phone from a talk with a friend who I hadn’t spoken with in months, I smile at the sense of renewal I feel. Nothing can replace a good laugh with someone who knows you well and loves you anyway. Friendships are one of the greatest… by Lisa Copen

One Woman Shares Her Story
“I cannot tell you how many times I have heard the phrase ‘But you Look So Good!!’ or ‘you look good, so you must not be in pain. . .”

Seeing Invisible Disabilities
Jesus had a way of seeing what others missed and ministering to those who were forgotten, shunned, or misunderstood. He touched and healed lepers when everyone else scurried away. He cared for those with chronic afflictions — such as congenital blindness and incurable hemorrhage — while others gave up. He bestowed hope where others scattered the ashes of despair… by Dr. Groothuis.

When You’re Spouse Doesn’t Believe that You are Ill

The doctor couldn’t find anything wrong with her, despite her complaints about pain and extreme fatigue. He left the room and her husband came back a few minutes later. “Hi, Honey,” she replied to her spouse, as she carefully reached out for his hand. But he didn’t reach out to take her outstretched hand; he just let it sit there empty on the scratchy hospital blanket. He looked at her with tired eyes, full of frustration… by Lisa Copen

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Winning Your Disability Case in Three Words…
Frequency, Severity and Duration

In a disability case, almost any symptom or limitation can be disabling; but to determine whether they preclude work, the relevant questions are how frequent, how severe, and how long do they last?…by Scott Davis, Esq.

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When Friends Turn Away

In my life friends have come and gone like autumn leaves in a fall rainstorm; momentary blazes of color, until the ill-wind blows. With every leaf that fell from my fragile friendship tree, they drained the sap of life from my very heart…

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Making Desirable Changes

Health problems and symptoms, with the possible exception of pure genetic disorders, carry a signal to change. Even the flu tells us to rest and take Vitamin C. The message can be as obvious as, “get better shoes,” if our feet hurt, or it may be hard to decipher. It can relate to an internal issue, like a headache that means, “Stop trying to be the perfect mother, already!” Or it could be telling us about an external change…By David Spero, RN

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No Cast, No Cane, No Pain

Have you ever seen someone get out of a car parked in a space reserved for the disabled, who did not LOOK disabled? Did it make you very uncomfortable or… by Sherri Connell

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I Never Know What to Say or Do!

Have you ever wanted to encourage someone with a chronic illness, but it seems like you never know what to say? Moreover, when you finally think of something you just know will make them smile, do they snap back at you with frustration? Well, you are not… by Sherri Connell

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30 Days of Guest Bloggers

We’re excited to start our 30-days of guest bloggers today. Each day there will be an article that we hope you will find interesting or helpful.

If you’re interested in being a guest blogger, submit your blog, bio, photo (optional) and answer the question, “Why I think National Invisible Chronic Illness Awareness Week is (worth celebrating)(important)(necessary)(helpful), etc.”

We also request that you include the words “invisible illness” and “chronic illness” at least once in your article so that we can reach more people with the search engines.

Thank you to all our guest bloggers! We hope you will visit their sites and learn from their shared experience.

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