National Invisible Illness Week Features Virtual Conference This Week

SBWire-9/13/10– National Invisible Chronic Illness Awareness Week is September 12-19, 2010 and this week, Monday through Friday, the campaign features a virtual conference with one 90-minute seminar each day.

Listeners can log on to http://InvisibleIllnessConference.com to listen LIVE or later to the archived audio file. The seminars will also be available at itunes.com . To listen live, log on during September 13-17, 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time.

Topics include coping with illness, parenting, getting organized, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues. Participants include best-selling author Pam Farrel, chronic illness coach Rosaline Joffe, and popular patient advocates Christine Miserandino or butyoudontlooksick.com and Jenny Prokopy of chronicbabe.com .

Over 20 speakers from all over the country come together to provide amazing workshops that are rarely available for those with illness who are unable to travel far for a conference or sit for extended periods of time.

The host of the show is Invisible Illness Week founder, Lisa Copen, who began this week in 2002 and has produced it each year since then. Lisa is the founder of Rest Ministries which serves the chronically ill and author of many books on chronic illness, including, “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.”

Invisible Illness Week offers many other ways to get involved including blogging for the cause, sharing invisible illness week facts on Twitter or Facebook, a Facebook cause page, and leaving anonymous sticky notes in honor of the campaign’s theme, “Each One Can Reach One.”

To find out more visit the web site http://InvisibleIllnessWeek.com .

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Invisible Illness Week Bloggers Make an Impact!

Are you blogging for Invisible Illness Week?

It’s easy… your topic can be on anything to do with your illness, a friend’s illness, your experience, whatever! We’d love to have join us.

You can also add the badge to the right to let people know and don’t forget to sign up at Bloggers Unite so we know where to find your blog so we can come read it!

Every little bit helps!

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Tweet Something About #iiwk10 Today

Are you on Twitter? We have over 2000 followers of us on http://www.twitter.com/invisibleillwk.

[And if you do Twitter about your illness you may want to join a group Lisa started Illness Twitters .]

There are lots of things to tweet about Invisible Illness Week! We have tweets for. . .

• 20 Things to Say to a Chronically Ill Friend
• 20 Things NOT to Say to a Chronically Ill Friend
• 25 Illness Facts in 25 Days
• If Your Friend is Ill Tips (27 of them)
• Friendship Tweets
  

A quick way to find any tweets about Invisible Illness Week is to search twitter for #iiwk10 which is our hashtag. If you do any tweets on II Week, be sure to put #iiwk10 somewhere in the tweet so people can find it later when they search.

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When Co-Workers are Chronically Ill Or Have Cancer: How To Support Them

“Success is the sum of small efforts, repeated day in and day out.” Robert Collier

Continuing to work with cancer or a chronic illness is very important for many people. It is one of the few parts of life that a person can feel they have control over. Having a sense of normality is essential when treatments, frequent visits to hospital become an unwelcome part of everyday life. Working can provide a welcome relief from daytime TV.

Here are 5 tips for supporting individuals working with cancer or chronic illness:

1. Treat them as a normal person; they are still the same person and not defined by their illness. They may look different, but it is the inside of them that matters most. Make them feel part of the team again.
2. Meet more regularly. Involve them in agreeing manageable workloads. Break tasks down into smaller steps. This makes any job more manageable and encourages a sense of achievement. It gives a great sense of personal satisfaction to leave work each day having achieved something meaningful. Prioritise together so individual knows the most important tasks to concentrate on.
3. Many illnesses are invisible and you will need to weigh up the individual’s right to confidentiality and disclosing to the team. The individual is the best person to guide you. It can help to be open with others close by who can better understand absences and also be more in tune to support the individual.
4. Consider a buddy scheme. With the permission of the individual it can be very successful to partner them with someone who has also experienced cancer or a chronic illness – even if they are in a different office. It helps to share how they manage daily activities which might seem manageable to most but impossible for the person who is unwell. It can be a chance for them to share how they manage life outside of work as well.
5. Each person is different and keeping the conversation open in vital. As a manager you may have experienced many people with illnesses but no two people are the same. Each one of us copes differently and need to be managed accordingly. All the answers can be found with good communication with the individual.

Carolyn Matheson is a Master Certified Coach, and works with executives and their teams across the world. She is one of the worlds leading executive coaches whose world turned upside down 5 years ago when diagnosed with a chronic illness. Follow her on Twitter @capcoach

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Thanks for a Wonderful Week!

Special thanks to all who participated this week! And guest what? If you didn’t, it’s A-okay, because all of the programs are archived and you can listen any time.  We will post links to specific programs over at our Rest Ministries site in coming week, but for now, just got to Blog Talk Radio at our Invisible Illness Week Account and you can choose from any of the programs this week or last year.

Here are a few quick things to know about!

Prizes

We will be randomly choosing prize winners and announcing them here on our web site next week. All you need to do to be eligible is to have posted somewhere. We’ll be choosing from people who registered over at Bloogers Unite, people who blogged about II Week, people who commented on blogs, people who Tweeted, Re-tweeted or posted on Facebook. People who join our Facebook Cause page or our Facebook Fan Page.

MP3 Players!

We have 3 to give away. Between now and Sunday night 9/20/09 at midnight, you can be eligible to win an MP3 player. One will be given away to a random person who:

• Makes any purchase at the Rest Ministries Bookstore, ChronicIllnessBooks.com
• Makes a donation (tax deductible!)
  
• Sign up to receive email updates from the Rest Ministries web site when we update it with articles, Q/A and more! (See Rest Ministries site here)

One winner will be drawn from each of these areas fora 2GB MP3 Player.

Blogs

Thank you to all of the people who have blogged about Invisible Illness Week. or done our meme. You have created an entire new level of awareness out there about invisible illnesses! Be sure to visit the sites of some bloggers here at our web site in the comments section and here at Bloggers Unite!

And don’t forget to read some of the blog posts of people who were Guest Bloggers here at our very own Invisible Illness Week web site.

Our Meme

It spread through Facebook, Twitter and more online thanks to your participation! Read people’s memes “30 Things You May Not Know About My Invisible Illness” here.

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Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

Patient bloggers band together to bring awareness to invisible illness issues from handicapped parking confrontations to why they hate hearing “You look so good!”

San Diego, CA — (SBWIRE) — 09/10/2009 — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.

With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”

Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.

Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the http://invisibleillnessweek.com web site.

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see http://www.invisibleillnessweek.com for details. Invisible Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.

Copen is also the founder of Rest Ministries which sponsors the event and http://IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.

Media Relations Contact

Lisa Copen
National Invisible Chronic Illness Awareness Week
858-486-4685

http://www.invisibleillnessweek.com

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Are You Blogging for the Cause? Post Your Blog Here!

Hundreds of people are blogging for the cause of Invisible Illness Week! Thank you!

We look forward to visiting you blog post. Please write a sentence or two about your post and provide your link. We look forward to reading it and possibly sharing it with others too.

And if you haven’t yet, we’d love to have you register “officially” over at Bloggers Unite!

Here is a sampling of some of the blogs by illness bloggers who have signed up with Bloggers Unite and the blogs they have written. Be sure to check them out!

____________________________
PRESS RELEASE – feel free to reprint
____________________________

Chronically Ill Unite September 14
to Blog About Invisible Illness Issues

9/9/09 – SBWIRE – SAN DIEGO — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.

With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”

Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.

Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible

Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.

Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.

Popularity: 11% [?]

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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When Abnormal Becomes The New Normal

Recently, a good friend of mine got mono. Whenever I’d read his status updates on Twitter or Facebook, I’d find myself slightly surprised at how limitations and symptoms that were new and foreign to him were completely typical for me. Can’t go to work? Can’t do errands? One activity in a day is too much? Trouble concentrating? His health was radically altered to resemble mine for a few weeks. It reminded me just how much I’ve had to adapt my lifestyle to my limitations. Dealing daily with abnormal health has become normal for me.

It’s not easy to understand chronic illness if you haven’t lived it. I’m always happy to find some kind of analogy for my daily struggles with dysautonomia in order to improve understanding and awareness. This dysfunction of my autonomic nervous system affects almost every system of my body. Symptoms range widely in type and severity from day to day or even hour to hour.

I can be doing ok one minute and flat on my back the next – quite literally. Describing these symptoms and feelings to another (healthy) person is just short of impossible, so sometimes I don’t even try. However, it can be helpful to use an analogy every so often, just to keep those around me in tune with what I cope with on a regular basis.

Tonight, I briefly visited the online support forum for my condition. One member made me smile knowingly when she posted that adaptation and adjustment to her limitations had left her forgetting what it felt like to be “normal.” She said that seeing people standing in 90-degree heat at a BBQ left her marveling: “What if they get overheated? How can they stand so long? How can they talk and not be short of breath?”

I share this sense of wonder when I see average people completing normal, everyday tasks with ease. I sometimes question how a person can have enough energy to get through a full day of work without immediately crash landing on the couch. For me, watching the average person function is akin to seeing a superhero leap tall buildings in a single bound. If I think back, I know that at one time I was healthy enough to do it all, but it’s as if I’m remembering a dream, not real life.

Standing is incredibly difficult for me because my blood pressure slowly drops the longer I’m upright. (To a lesser extent, this also happens with sitting upright.) Unless I shift my weight around, walk, or do something else to circulate my blood, my brain gradually runs out of oxygen the longer I remain standing still.

I used to have no analogy for this kind of feeling, other than a fogginess in my mind and a feeling of urgency to move or lie down. I mean, even though my brain is slowly being deprived of oxygen, I still look entirely normal on the outside. What do people think when I start to have trouble following their conversation or finding words? Do I look thoughtless when I ask a question they just answered 5 minutes ago? Do I appear stupid when I have to think hard about simple responses? Does it seem odd that I can walk over to greet someone but shift away uneasily while we converse? All these questions go through my mind.

Standing for me is similar to lifting a heavy weight above your head. At first, you can hold the weight up without much of a problem. Sure, it’s heavy, but it’s possible.

Then your arms begin to shake as your muscles fatigue. Soon, you can feel your body crying out to put this weight down. As you power through every message your body is sending you to STOP, you eventually find that you cannot will yourself to go on any longer. Your arms suddenly reach the breaking point and collapse under the weight that at first was manageable. It’s the same way standing feels to a person with dysautonomia. The initial stance may be manageable, but the longer I stand, the more urgently my body signals me to sit, sit, sit! If I ignore these signals for too long, I can eventually collapse.

Another problem that I deal with regularly is severe fatigue (usually with muscle aches). Saying these words makes it sound like a nice nap or a day in bed will have me back up in no time. However, my invisible illness is not cured by sleep, and in fact, my fatigue is often at its worst during the hours after I wake up! I have had a hard time describing this type of exhaustion to the average person. There is just nothing like it when you are young and healthy with endless energy. The closest description that matches this feeling is when you have the flu. The flu makes every single muscle in your body ache, and moving feels like you are fighting through molasses. People who have had the flu or even mono can understand this feeling.

When this crushing exhaustion is unrelenting for months and years, it is not possible to maintain a normal life. Imagine how having the flu disrupts normal life for a week or two. Now think about what it would be like to have the flu all the time. It’s important to remind others that even though I look normal, I’m actually putting forth 3 times the typical amount of effort to get through a particular activity, and afterward, I “pay” for an event with worsening symptoms for days after it’s over.

I’ve been thinking carefully about these analogies for some time, and I’m writing about them not to get sympathy, but to spread awareness of what it’s physically like to live in a body limited by chronic illness. Each person with chronic illness probably has a particular symptom that disables them more than others, and some are more severely disabled than others, but the result is the same – trying to operate as normally as possible while feeling very far from normal.

Next time you meet someone who seems confused, distracted, or has trouble following your conversation… next time someone tells you they are just too exhausted to make it out… next time you meet someone with a chronic illness, remember that though they may appear normal, it’s quite possible they are fighting through physical suffering greater than you could ever imagine.

National Invisible Chronic Illness Awareness Week is revealing the struggles behind the smile.

Kristen first experienced chronic illness at the age of 17. Due to serious mold and pesticide exposures, her nervous system and immune system became damaged, leaving her chemically sensitive and unable to maintain her summer job or to remain at her first college.

Due to disability accommodations, a healthy amount of determination, and God’s generous favor, she moved back home and went on to earn both a Bachelor of Science and a master’s degree in biomedical engineering. By that time, her symptoms caught up with her, and just before graduation, she was incapacitated with what was diagnosed as POTS/dysautonomia.

This dysfunction of her autonomic nervous system left her struggling to sit up, stand, or walk, and she had to adapt to a new normal. Now 28, she lives within her limitations, working part-time from home, and learning how to depend on God more than ever before. Read more at her blog.

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Support Invisible Illness Week w/ a Twibbon for your Twitter

We just reached 50 people who are using the Twibbon on their Twitter image. In case you’ve not heard of this it’s like a watermark with the II Week graphic that can go over the top of your Twitter image. You can take it off at any time…. Thank you so much folks!

See below for how you can do this to help us spread the word. Less than 1 week till “kick off!”

Get your ribbon today!

http://twibbon.com/cause/Invisible-Illness-Week/

(and see our awesome supporters…. somebody is gonna get a prize)

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