Up – Visit Some Fabulous Invisible Illness Week Blogs

Many of you have been a large part of spreading the word about National Invisible Chronic Illness Awareness Week by blogging about it for us! Thank you!

And we hope that you have gained some encouragement and inspiration in reflecting on living with invisible illness as well as reading the blogs of others.

• So far this morning you can read over xx blog posts with people who have registered through Bloggers Unite. To read them click here at Bloggers Unite for Invisible Illness Week and then scroll down. Ont he right hand side it will say “Participating Blogs.” About 171 bloggers are registered from 2009 and they still have wonderful posts to read.
• Bunches of people have participated in our Meme, “30 Things About My Invisible Illness You May Not Know” here.
• If you read a post, be sure to leave a comment, even if just a short one. All of our bloggers love to hear from you and know that you stopped by!

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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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Grand Rounds Blog Carnival – Vol 5.47 Invisible Illness

It’s Back to School time and also coming up is National Invisible Chronic Illness Awareness Week, September 14-20. 2009. About 133 million people, nearly 1 in 2 in the USA live with a chronic condition and most of these are not visible. We hope you will join us for our virtual conference with 20 online free seminars for Invisible Illness Week (9/14-9/28).

This week the Grand Rounds Carnival takes a “look” (ironic choice of words) at invisible illness issues as well as the best of the medical bloggers who update us on everything from new medical gadgets to their personal experiences.

SAYING GOODBYE

Moms and dads offer big hugs to the kids as they head off to school and we have no control over their circumstances but as Donna shares, in her post Trusting God In The Storms, even when we don’t have control over our illness these difficulties in life can help us grow.

NEW TEACHERS

Back to school means meeting new teachers just like we meet new doctors. How do you find a great doctor? Rita Schwab at Supporting Safer Healthcare gives us some tips for Looking For Dr. Right

And then we have to get to know these new doctors,  explain our whole story again, decide if we like him or her, and see if the doctor will even “accept” us as a patient. Selena writes in Tomorrow I See a New Doctor how shifting her attitude from seeking a cure for her illness to self-management is an important step.

FRIENDS

It’s not really school without a few misunderstandings between friends. Angela shares how even the best of friends still don’t understand when we tell them we can’t play today and have to cancel our plans in her blog post You’re Sick Again?

Jasmine loves parties too, but migraines, fibromyalgia and Multiple Chemical Sensitivity can sometimes prevent her from attending. In her post Understanding Invisible Illnesses she tells us why even a party can stress a girl out.

Jenny over at ChronicBabe.com has launched a bunch of new resources to provide young women with even more illness support. This includes a podcast series and a forum.

THE PRINCIPAL’S OFFICE

Should those in charge always be free from illness? Or can illness improve a person’s ability to cope with life’s challenges? In the Health Business Blog, David E. Williams writes about Diabetes as Sotomayor’s Enabler He says, “A number of articles have questioned –indirectly or directly– whether Supreme Court nominee Sonia Sotomayor’s diabetes will have a negative impact on her ability to serve. ”

SCHOOL RULES

One would think gadgets in class would be a no no, but Dr Shock MD PhD confesses how he plays games on his iphone will waiting for patients in Computer Games At Work Are Good For You and he has research to back it up!

On the other hand, a patient’s text-messages and phone ringing can be quite annoying to a doctor when he is trying to have a discussion with his patient. Dr. Charles discusses his frustrations with the intrusion of constant text messaging in the examining room and predicts an Amish revolution in his post Why the Intrusion of Texting will Lead to an Amish-style Revolution .

No giggling in class? Duncan Cross explains the morbid Sense of Humor that keeps him going – and why it won’t work for everyone.

And one rule that the world of medicine continues to need to be reminded about–men and women should be treated equally (In other words, there’s not such thing as a “woman’s disease” just because you ae a woman in pain. ) Migraine blogger, Betsy Blondin at Migraine Journey offers a great explanation of her experience in her post If Women Ruled and Migraine Had Maggots.

THE LIBRARY

Denise remembers to drop off her books at the library. That should be a simple task, right? But when you have a balance disorder like Meniere’s disease you are just glad you Fell On Step 2 (not 5).

Claire Pearson, MD, asks in her post Got Public Health? what role does emergency medicine have as public health advocates? Is emergency medicine at the forefront of public health in the United States? She reminds ER workers “you must keep in mind your role as an emergency medicine physician is not limited to the immediate care you are providing, but the long term care you can provide as you address public health aspects for an individual patient.”

TESTS & TO-DO LISTS

Oh, those dreaded tests. Including the daily testing of blood sugar. Sara at Diabetes Daily explains in her post Not Why, But What Now? how taking tests can lead to failure and then shame. But with a change in attitude we can be back in control.

And what about grading on a curve when it comes to medicine? Sometimes, illnesses can be “invisible” in clinical research. Amy Romano at Science & Sensibility shows that if a study is not designed to properly measure the incidence of a disease, we can not reliably detect risk factors or consequences in her post, No Difference?

Diabetes blogger Kerri Sparling, author of Six Until Me, is planning her pregnancy and sharing her ‘Diabetes to do List’ to help her get under control for her future baby. (Congrats, Kerri!)

FINANCIAL AID

A patient living with chronic illness and private individual health insurance, Lisa Emrich is “getting squeezed” by a 31% increase in her health insurance premiums. Yikes. Read her post at Brass and Ivory’s “Getting Squeezed” post in which Lisa provides a very good example of why we need health care/insurance reform.

David Harlow pulls together a couple of recent developments touching on chronic disease management at HealthBlawg. First, he reports on Ken Thorpe’s recently released assessment of the major health care reform bills as they relate to chronic care. Second, he spotlights a new online community targeted at primary care physicians interested in developing medical homes. Since the savings engendered by care coordination through medical homes are usually two to four times the cost of implementing the model, this is certainly a trend to watch.

SCHOOL COUNSELOR

A stop by the school counselor’s office reminds us that many teenagers cope with having a depressed parent. Nancy L. Brown, PhD at Teen Health 411 shares some tips.

And Laurie Edwards reminds us in her post, Synergy (In An Unexpected Way) how as a patient, it is easy to overlook how challenging it can be for those who love us. A loved one’s struggle gave her a deeper appreciation for how helpless you can feel watching someone you love suffer, and deeper respect for her husband, who must feel the same way.

PSYCHOLOGY CLASS

Teia explains in her blog that Finding Your True Self is the only way we can better our health.

Tom Robinson, of Living Your Best Possible Life When You Have a Chronic Illness blog confesses how Three Important Words have brought him tremendous healing of the emotional pain and suffering that accompanies chronic illness.

WATER FOUNTAIN

Don’t forget to get a drink of water! Paul Auerback shares in Medicine for the Outdoors post Cantimer that dehydration is one of the most “invisible,” medical conditions, contributing to poor physical performance and worsening of most  diseases or conditions with which it is associated. Learn to detect dehydration!

SCIENCE CLASS

Is Education is the Key to Eliminating Your Chronic Pain and Regaining Your Health? Paul Rothbart says yes! A chronic pain specialist who chronic neck pain for many years shares Gallup poll results that 4 out of 5 Americans believe that chronic pain is a natural part of aging and 60% believe that pain is something you just have to live with. But he says pain is not part of aging.

SOCIOLOGY CLASS

A surgeon working in the South African province of Mpumalanga explains in his post Stand Back, I’m a Doctor how death is inevitable and sometimes the best one can do is stand back and wait.

InsureBlog’s Mike wonders why the end-of-life counseling provision in the new health care bill isn’t a conflict of interest in his post Anyone? Bueller?

In his post Wheelchair — Invisible, “Chairdozer” shares how despite being a “6’ tall man, in a large, noisy, clunky rehab power wheelchair” he is still invisible to many people who bump into him, avoid him, and more.

LUNCH TIME

Yes, there is such a thing as a free lunch, but that doesn’t mean we have to accept it! The How to Cope with Pain Blog advises Let Your Doctor – Not the Drug Company – Choose Your Medication sharing how The American Psychiatric Association is no longer accepting sponsorship at its annual meeting, along with other local and national medical organizations.

Tami lives with three painful conditions: fibromyalgia, Sacroiliac Joint Dysfunction, and Myofacial Pain Syndrome. And there is nothing she’d like more than a ordering up healing at the drive-thru just like she would lunch. But as she shares in her Dealing with Pain by Praying….UGH! “God is not fast food.” (Does that image mean drive thru on Thursdays or is it just me?)

HEALTH CLASS

Roll call for illnesses! We had some guests write on specific illnesses to increase awareness.

Changing the stigma of illness begins with education, Dr. Deb of Psychological Perspectives shares a video and post Changing Mental Illness Stigma As It Exists In The Real World that highlights how to do this.

If you have interstitial cystitis you will want to read Coping with Interstitial Cystitis by Gloria where she has an in depth post of how it can effect your life.

Trudy explains about Reflex Sympathetic Dystrophy in her blog A New Beginning: My Life with RSD

Addison’s Disease is the topic of Laika’s MedLibLog with a detailed post on the illness and her experience.

Lena shares all the information she wishes she’d had sooner in Recovering from a Pulmonary Embolism.

NURSES OFFICE

Lauren has a great blog at the Novel Patient and somehow, despite being in the hospital with a kidney infection, she still managed to write a blog post about what she has to be grateful for in Hospital Perspective.

Having a good relationship with your medical team means actually bringing up the topic of :end of life” medical decisions. “Notes of an Anesthesioboist” shares, “End-of-Life Preparation is a Responsibility, Not a “Death Panel” saying, “end-of-life is the invisible issue no one seems to want to talk about, but it becomes everyone’s problem eventually.” This post from a doctor who has to face life-and-death situations for a living explores why such talk is a good idea.

THE BATHROOM MIRROR

For us gals, what would our school memories be without trips to the bathroom to check our face? Leslie at Getting Closer to Myself shares an incredibly reflective post, Everyone Wants To Be A 10, But No One Wants To Be A 710. She talks about how illness can impact self-esteem and explains her avoidance of the camera to actually getting some photos taken of herself “as is.”

Rachel writes at her Diabetes Tales at Diabetes Daily, “These days, what matters most to me at the end of the day is what I see in the mirror. I don’t have a full-length mirror, so I am just focusing on my face when I do this.” Her post About Body Image discusses balancing the reality of how type 2 diabetes needs to be treated in overweight/obese individuals with maintaining a healthy body image.

STUDENT COUNCIL

Have you ever wonder how someone goes from being diagnosed with a chronic illness to being a patient/advocate and support for other patients? Wondering about how I became LA Lupus Lady? will give you insight into one LA Lupus patient and her transformation as she became LA Lupus Lady.

JOB FAIR

We may plan on a certain career, but illness often changes those plans! In The ART of Survival at IconDoIt – The Blog Leslie Javorek shares her career journey through illness.

Physicians often face invisible disabilities too! As a result, some may need to find non-clinical work opportunities, but they often don’t know where to begin. Joseph Kim tells us in his post Non-Clinical Physician Jobs, Careers, and Opportunities.

PARKING LOT

When you think about it, doesn’t a good percentage of our education occur out in the high school parking lot? Lisa of Invisible Illness Week shares a reflective post Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?

OPEN HOUSE

It’s always fun to have open house and share what we have learned!

Roger shares how chronic illness impacts the entire family in a special post about his family What Is Your World-Changing Story?

Dr. Penna shares his post about human atlas application in iPhone. This iPhone application is useful to medical students and patients to understand more about human body.

Many invisible illnesses have genetic, environmental, behavioral and lifestyle causes that are shared between family members (e.g. fibromyalgia, chronic fatigue, multiple sclerosis, heart disease). Walter Jessen at Highlight HEALTH writes about an upcoming National Institutes of Health (NIH) State-of-the-Science Conference on Family History and Improving Health. The conference is open to interested members of the public and will be Webcast live later this month.

Thanks for reading!

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Next week’s Grand Rounds will be hosted by The Examining Room of Dr. Charles.

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II WK Hosts Ground Rounds 8/18

We are so excited and honored to host Grand Rounds 8/18/2009.

In case you have not yet heard of Grand Rounds, it’s a blog carnival that’s hosted on a different blog site each week. The host chooses a theme and links to medically or health/illness-oriented blogs posts that are submitted for the theme.

It’s always very informative and usually entertaining too. The hosts do a great job of keeping it interesting, whatever the topic!

Our theme? Invisible Chronic Illness, of course!

We are looking for all kinds of posts that have anything to do with invisible illness or hidden disabilities from both patients and medical professionals, as well as medical students, scientists, caregivers, counselors, social workers, or anyone who has had an “invisible illness” experience.

Here are some ideas:

• Are you a medical professional? Do you feel you understand invisible chronic illness? Do you have a family member who has an ICI who has changed how your understanding of patients’ experiences?
• Do you tend to treat patients who lack deformities, seizures, shakes, or other noticible physical ailments different even when you try not to?
• Are you a patient who has had an an experience– good or bad –with a doctor and his or her understanding about invisible disease?
• Do you believe men are treated differently who have conditions such as fibromyalgia which have been labeled a “woman’s disease”?
• What is a patient’s perspective of invisible illness, the emotions, the doubts people have, the lack of understanding about amount of chronic pain?
• Are you the friend of someone with an invisible illness? How has your friend communicated how he or she is feeling, even when looking fine? What changes have you made to accommodate his or her limitations, even though no one else may have known they were needed or necessary?
• “But you look so good!” If an ill patient doesn’t want to be told she looks good, what should she want to look like?
• When your illness goes from invisible to visible? Is the grass greener on the other side?
• How has Web 2.0 is changing awareness about invisible illnesses? A lot of patients are using social networking tools to spread the word about their disease/causes.
• How can technology, such as illness software for an iphone or using Twitter for pain diaries change how medical professional understanding the hour-to-hour living with an ICI?
• Are you the parent of a child with an invisible illness? How do you (or do you) explain an invisible condition (like autism or sensory processing disorder) when people say your child just needs to be disciplined more?
• What is invisible illness (yes, things like depression, panic disorder, etc. do count!) Share your experience with living with or treating patients, who have an invisible condition they must cope with that the average person doesn’t understand.
• Are you a caregiver to someone with an ICI? A spouse? How have you grown over time in better understanding ICI?

Your topic doesn’t need to be on the lis, this is just a place to start for ideas. We look forward to your submission, due 8/16/09 (but the sooner the better please!).

Rules:

• One entry per blogger
• Recent posts between 400 and 1000 words are preferred
• Posts are to be written for a general audience

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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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Popularity: 4% [?]