How You Can Help This Week! Things to Know

Monday, September 13, 2010 kicks off Invisible Illness Week!

There are many ways to get involved in the online activities of the week, but the most important thing to know is…

We will be having an online VIRTUAL conference. What does that mean? Each day, M-F, 10:30-12 PACIFIC you can go directly to http://invisibleillnessconference.com and you will be connected with our workshop automatically at Blog Talk Radio.

Each morning we will have a series of special guest experts who have dealt with illness in their own lives who will be able to answer questions and who will have some key talking points about topics such as coping with illness, parenting, getting organizes, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues.

Here are some other ways to get involved:

Tell someone!
Do you want to email a family member, friend, pastor, counselor, support group leader, your favorite newsletter’s editor? Here is a short description of Invisible Illness Awareness Week – copy, paste, & share anywhere! http://ow.ly/2D1eo

If you have a blog:
Do our meme: “30 Things You May Not Know About My Invisible Illness” (Found here: http://ow.ly/2D1aQ ; Or blog about any invisible illness topic) and then sign up at Bloggers Unite so everyone can find your blog post at http://ow.ly/2D13m Be sure to grab the badge that you are participating too!

Grab the button for your site:
See bottom right side column with code at http://invisibleillnessweek.com

Read about our panelists/special guests:
See someone who you want to make sure your friends know about – be sure to let them know with an email and link to this page:
http://invisibleillnessweek.com/2010/09/08/conf-workshops/

Connect with others: Join the Sunroom group for Invisible Illness Week: http://www.restministriessunroom.com/group/invisibleillness

Download our free 80-page ebook!
20 Experts share their tips about living with a chronic illness. Just sign up for the daily updates from Invisible Illness Week at http://invisibleillnessweek.com (top right side of page), confirm “subscription”, and you will get the download link.

To read blogs of others:
Bloggers who have committed to blogging about invisible illness week or II topics are registered at Bloggers Unite at http://ow.ly/2D13m – Here you can get a description of their blogs too.

Do you tweet? Here are some great things to retweet!
http://invisibleillnessweektweets.wordpress.com

Give a donation!
Have you considered giving a donation to help with Invisible Illness Week expenses?  Every little bit helps if you are financially able to give. http://ow.ly/2D1sh

Check out the photos of where people have left sticky-notes this year! http://invisibleillness.com (right column)

If you are on Facebook:
Join our “Invisible Illness Week Cause” http://ow.ly/2D1GP
Be a Fan! http://ow.ly/2D1I3
Click the “like” button on any of our web posts at http://InvisibleIllnessWeek.com
RSVP to the “event” http://ow.ly/2D1A5

* Share anything (the Cause, Event, Group, etc.) with a friend!

Post this as your status!
Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love. In recognition of Invisible Illness Awareness Week, http://InvisibleIllnessWeek.com post this as your status so someone who is suffering silently knows someone cares!

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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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“You’re not alone. I have a pebble, too.” The Invisible Illness Experience

Andrea shared the following in the Meme “30 Things About My Invisible Illness You May Not Know.”

People would be surprised to know. . .
That on the days when you ask what I have done today and I reply glibly with “Oh, a little gardening, a little reading, a little knitting…” and you think how spoiled she is, how lazy… What I am not telling you is that those days are the ones filled with pain to the point where I cannot stand to move, to stand, to sit, or even to lie down. I go out in the garden and let the touch of the plants be a sort of meditation, grounding me to my surroundings and reminding me that I am but a tiny piece of the glory that is our universe. I read as an escape from my current reality of agony, and as a distraction, and as a pleasure in the midst of pain.

And when that escape is no longer working, I knit, to keep my hands from clawing at the ants buzzing around under my skin, and to keep my mind busy enough with knit three purl two that it won’t get lost in negativity.

I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger.

But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”

It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.

–Andrea at Kids by Hand

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Chronically Connected – How The Chronically Ill Form Relationships Online

By Jenny Pettit

It’s virtues are extolled: immediate access to information, improved work/life balance by working from home, and the ability to connect with others around the globe at a minimal cost.

It’s also accused of great evils: removing the need for face-to-face communication, facilitating white collar crime, and leading to the muscular atrophy of an entire generation. What else could have this affect but the World Wide Web!

While it’s true, the internet can and is used for the “wrong” reasons and with bad results, the same can be said of religion, airplanes, or freedom of the press. What’s the common link among these ideas and inventions? They ultimately become tools in the hands of human beings – well-intentioned but imperfect Mankind.

But just as religion gives billions of people a framework for life, airplanes deliver food and supplies to disaster zones, and free press led to the birth of our nation, the internet gives millions the resources we need to improve our lives in ways never before imagined. It would have taken our unplugged ancestors a generation or two (or more) to assemble – let alone process – the volumes of information we can now find and search in just a few seconds.

This access is wonderful, and a gift I make use of many times each day. However it is not, perhaps, the greatest gift the internet provides.

Humans are social creatures, hard-wired to need interaction with others – also known as a ‘community’. If you don’t believe me, go ahead and use that powerful internet search tool to read about otherwise healthy babies who die in understaffed orphanages for lack of touch or how solitary confinement causes psychophysical distress by denying human interaction. Or, check out this scholarly article about the science underlying this phenomenon.

We seek to be both one of a million and one in a million; that is, we want to be simultaneously reassured we belong and that we are unique persons whom no one could replace. But we wouldn’t know if either goal were met without KNOWING and RELATING TO other people!

And so we join clubs then seek a leadership role, attend block parties and talk about our latest vacation, or play a team sport and dream of being named MVP. For the chronically ill, I’ve found that this mindset takes on a very specific form.

We want to find others with the same symptoms or diagnosis as ourselves, and upon making this connection we immediately begin spouting off our personal stories, complete with symptom progressions, medications, prognosis, and views on the future.

Knowing that I am one of a million (or, in my case with Sjogren’s, one of 4 million) Americans with my diagnosis is important to me. It means information may be available about how to cope with many of the problems I face, and that it’s been around long enough for there to be data for use in framing a prognosis.

Moreover, because I know other Sjogies exist, I am guaranteed to find people I can talk to who I know will understand what I mean when I try to describe weird symptoms or processes I go through, and if they understand that must mean I belong. At the same time, finding these people reaffirms that I am still one in (four) million – we may have the same diagnosis but none of us have exactly the same experience living with it.

There’s the obvious differences – severity of symptom progression, comorbid diagnoses, or age – and less obvious ones, e.g. personal stances on specific treatments or even reactions to the same medication.

To my point, social networks or interactions are part of human nature, and take on a prime importance when people are faced with challenges. Chronically ill persons face the same challenges as the rest of society, but must also cope with their special challenges every day at the same time.

Therefore, it stands to reason that these people experience a greater need for – and find greater benefits in – social venues. And yet, social excursions often require people to do the very things that are problematic for this population. Mobility problems, unpredictible symptoms, extreme fatigue, and “brain fog” (or reduced ability to think logically) are just a few roadblocks.

When added to the plethora of ‘extras’ most of us carry (medications, comfort aides, water bottles, sweaters, joint-support paraphenalia, etc), it rarely becomes worth the effort. And to top it off, a lot of chronic illnesses and the methods used to treat them make the patient susceptible to contagious illnesses such as colds, flus, and infections. It’s a wonder we don’t all become hermits!

But, without these social connections, we are left very vulnerable in every way. Ill or not, we must have information, access to resources, and support. We all generally find a way to get to the doctor or pharmacy and meet our physical needs, but for years we simply couldn’t find a reasonable way to meet our emotional ones.

Which brings us full circle, to the World Wide Web. Now, we can find each other. Now, we can join groups and discussion boards that will fit into our schedules instead of disrupting them.

If I can’t sleep at midnight but crash out at 2 in the afternoon, I can post something at night and read someone’s response the next day without us needing to be present at the same time. Instead of being subject to the opinions and educational limitations of one doctor I find the energy to see, I can scour the web for more ideas and insight and take an active role in my care.

And even to my own surprise, I can develop REAL relationships with people I’ve never met (and probably never will). A woman undergoing chemo in Alabama is now just as important to me as people who live in my town. Another woman 3,000 miles away was the first to tell me when she found my group in a newsletter (that I don’t even receive and would never have seen on my own).

And, I hope, my stories and advice may be positively influencing someone out there who might never have even pursued treatment if they hadn’t heard that something could be done, or know that I care when the ‘real’ people in their lives turned their backs.

And so, to the many who are trying to unplug, I tip my hat and offer best wishes that they find the peace of mind connectivity may have stolen from them…and I turn, pick up my laptop and BlackBerry, and settle in to enjoy the gifts of being Chronically Connected.

When Jennifer Pettit was diagnosed at 15 and with symptoms that presented as young as two, she decided the only way to approach her new life was to embrace it. While in college at Villanova University pursuing a degree in Accounting and minor in Theology, Jen worked with the university to promote awareness of invisible illnesses among her peers and professors.

In founding the grassroots group “UII – Understanding Invisible Illnesses,” Jen seeks to promote awareness of chronic invisible illnesses as well as providing access to resources and support for both sufferers and those who suffer with them – friends and family. To connect with Jennifer and others visit her blog at www.myuiiblog.blogspot.com and/or http://groups.to/uii .

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Should I Feel Guilty When I Have a Good Day?

By Tiffany Christensen

Is joy salt in the wound or hope for tomorrow?

Before writing this, I wanted to look up the definition for the term “mindfulness.” It is language I am using more often and the basis for this blog entry. However, it took me seconds (via google and wikipedia) to learn the term has many meanings and I could not find a definition for how I use it personally. Hmmm. Did I make it up and all this time I have been misusing this term?

Either way, mindfulness as I defined it somewhere, somehow, along the way is being aware of oneself (internal and external awareness) while also being aware of how one’s actions, speech and thoughts might effect others. For me, this primarily means the people I care about because I feel far to overwhelmed when I consider being mindful of everyone on planet earth!

So, with this approach in mind, I find myself with a question for my blogging friends.

There are so many people in my life who are suffering. Many of them are friends I don’t know IRL (in real life) but their struggles permeate my thoughts often despite the lack of physical presence. In addition, people in my RL are struggling in a variety of ways. Primarily I am referring to physical struggle, serious illness etc, but at times this can mean emotional struggling also.

More and more, I find myself feeling a compulsion to hide or downplay the sweet parts of my life. It is not that I don’t have struggles, I do, but they pale in comparison to the people I know living day to day for another breath.

This compulsion comes from a place of “mindfulness” as I define it. It seems hurtful to me to sing the praises of my life when I know others are suffering so. I feel as though I should keep any of my good fortune to myself out of respect to those who are sad, scared and hurting.

I suppose I have some silly notion that when everyone is “all better” and the suffering is gone, I will again shout from the rooftops my love of this life. But, of course, the suffering will never end. One person will recover and another will suffer. This is life. One day the suffering will be mine again.

So, am I ridiculous? Can you relate? Am I on to something or out of my mind?

When you are suffering, do you like to hear of the joy in other’s lives or is it like adding insult to injury?

Should I follow this instinct I have and practice my made up version of mindfulness or should I share my happiness even with those who currently suffer?

What do you think?

After spending over 30 years in and out of hospitals, Tiffany Christensen realized that she had a lot of practice at being a patient! After getting her first lung transplant for cystic fibrosis, she found herself waking up in ICU with another set of donor lungs only 4 years later. She is the author of “Sick Girls Speaks” and “We are the Change: Transforming the Healthcare Experience through Partnership”, a speaker and a patient blogger at Sick Girl Speaks.

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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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Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?

By: Cecil Murphey

When you see an elderly person coming toward you in a wheelchair, do you ever make eye contact with the person pushing the wheelchair? Who notices the caregiver? Do you give them a greeting, a smile of encouragement for their difficult days?

The almost invisible caregiver. (by Cecil Murphey)

Years ago, two of us stood talking outside a theater. A man pushed a wheelchair past us. Although we continued our conversation, both of us watched. He stopped next to a dark blue Honda, unlocked the passenger’s door, and helped the woman in the wheelchair stand up. Even from twenty feet away, it was obvious that her pain made it difficult for her to move. Once the man helped her inside, he folded the wheelchair, put it in the trunk, got in on his side and they drove off.

“Poor woman,” I said. “She must live in terrible pain.”

After the car drove away, my friend said, “I’ll bet you could describe the woman in the wheelchair, couldn’t you?” After I nodded, he said, “But I’ll also bet you don’t remember nearly as much about the man, do you?’

“Why, he was- “Then I realized I had hardly noticed him. He was just an older man.

Since the, I’ve realized that’s how many of us view such couples. The caregiver easily becomes a non-person. The sick one receives the attention and the concern.

From: My Parents, My Children, Spiritual Help for Caregivers by Cecil Murphey; Reprinted as a blog post form http://www.nursevirginiablog.com. Used with permission. Westminster John Knox Press, Louisville, Kentucky

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• Online Resources for Caregivers of Alzheimer’s Patients (distance-education.org)

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Creating Pain Awareness Through Photography

We received this information from the CT Pain Foundation and thought you may be interested!

Nearly seventy-five million Americans deal with pain. Chronic pain is an all-encompassing problem that knows no boundaries. It affects the poor and the rich, the young and the old, male and female. No race, class or age is spared from its debilitating hold.

In a sense, pain is the invisible disease. Pain is intangible, subjective and personal. Each person has a different level of tolerance and a personal way of defining pain’s intensity. As a result, many people with pain face judgment and ridicule. Pain leaves people feeling unheard, misunderstood and alone. It often goes untreated and underfunded.

CT Pain Foundation, a nonprofit, is dedicated to creating chronic pain awareness, empowering survivors and generating change. The INvisible Project is aimed at accomplishing all three.

September 30, 2010 in New York City
October 21, 2010 in Connecticut

The INvisible Project is a photojournalistic showcase of the day-to-day experiences of real people with chronic pain. To reflect the widespread effects of pain, a variety of conditions are represented, including cancer, complex regional pain syndrome (CRPS), Ehlers-Danlos syndrome, juvenile arthritis, multiple sclerosis, and fibromyalgia.

The goal is to make visible the experiences and strength that are often hidden behind the walls of hospitals and bedrooms. The INvisible Project will contrast the fragility of our physical bodies with the immense fortitude of spirit essential to living each and every day.

To raise awareness and funds, the photos and stories of the ten INvisible Project participants will be on display at the Times Square Intercontinental in New York City on September 30, 2010. As September is National Pain Awareness month, the INvisible Project is determined to spread awareness, create advocacy and ___ patient rights. The second event is scheduled October 21, 2010 at the Westport Play House in Westport, Connecticut.

One hundred percent of the proceeds will directly help those living with pain. To expand its programs and support groups, seventy percent of the raised proceeds will go to CT Pain Foundation. The remaining thirty percent will fund chronic pain research.

It is the mission of the INvisible Project to validate the suffering while highlighting the strength and courage of chronic pain survivors.

About CT Pain Foundation:
CT Pain Foundation is a 501(c)3, non-profit organization serving persons with pain, their families and care providers. Founded in 2006, CT Pain Foundation promotes healthy support groups and other positive, hands-on programs for those living with pain.

Related articles

• Facebook Brings Those With Chronic Illness Together for Invisible Illness Week (invisibleillnessweek.com)
• Rest Ministries Sponsors Invisible Illness Week (chronicillnesspaindevotionals.wordpress.com)
• Pain Awareness Month (somebodyhealme.dianalee.net)
• Why Do We Pit One Illness Against Another? We’re All In This Together (invisibleillnessweek.com)

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You Never Know Who Your Notes May Touch!

This was a quaint little story that is being passed around in emails but someone sent it to me and it reminded me of what our notes are doing! Lisa

There are many times when we begin a certain task that God lays on our hearts and because we think our efforts are minimal and not making a difference, we quit the job that God told us to pursue.

The enemy loves to plant seeds of doubt and lure us into thinking that we are not capable of making a difference in this world, but with God’s help we can overcome and fulfill the destiny that God has for every believer.

If you are going through a situation of doubting your task unto the Lord, then I hope this story will bless and encourage you to never quit what God has laid on your heart because you may never know of the lives that you are touching.

I read of a man who was involved in a tragic accident. He lost both legs and his left arm and only a finger and thumb remained on the right hand.

But he still possessed a brilliant mind, enriched with a good education and broadened with world travel. At first he thought there was nothing he could do but remain a helpless sufferer.

A thought came to him. It was always nice to receive letters, but why not write them–he could still use his right hand with some difficulty. But to whom could be right?

Was there anyone shut-in and incapacitated like he was who could be encouraged by his letters? He thought of men in prison–they did have some hope of release, whereas he had none–but it was worth a try.

He wrote to a Christian organization concerned with prison ministry. He was told that his letters could not be answered because it was against prison rules, but he still decided to commence this one-sided correspondence.

He wrote twice a week, and it taxed his strength to the limit. But into the letters he put his whole soul, all his experience, all his faith, all his wit, and all his Christian optimism.

Frequently he felt discouraged and was tempted to give it all up. But it was his one remaining activity, and he resolved to continue as long as he could.

At last he got a letter. It was very short, written on prison stationery by the officer whose duty it was to censor the mail.

All it said was: “Please write on the best paper you can afford. Your letters are passed from cell to cell till they literally fall to pieces.”

No matter what your situation may be like, you still have the ability to encourage someone who is discouraged and lift up someone who is feeling low.

Take this story as an encouragement to give your all for someone else and do not worry about the results. No good work will go unseen and only God knows of the impact that your life can have on someone else.

Let us not do our good works so that we may be praised, but let us do good works so that others may be lifted up and God be praised because of our intervention.

The only thing that we can take with us into eternity is what we have done for the Lord. There are no bank accounts in heaven to show how much your net worth was on the earth, but there will be accounts in heaven of what you did to show your life as an example in leading others to Him.

— Author Unknown

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What Illness/Health Related Newsletters Do You Get?

Between all of us with a variety of chronic illnesses and symptoms, there are hundreds of thousands of newsletters and ezines out there on the internet. Since many of us live with different illnesses than our friends, we actually have quite a few editors we can reach in a short time.

I am letting the editors of the newsletters I receive know about Invisible Illness Awareness Week.

I am just going through the newsletter ezines I’ve received in the last few weeks and have hit “reply” or “contact” and sent them an email sort of like this (be sure to personalize yours and keep it short)

Keep in mind that the easier you can make it for them to tell others the more likely they will! So be sure to include the paragraph that has the description they can copy and paste.

Dear (name):

I recently received your newsletter and enjoyed it as always, especially the part about (what I liked here).

I wanted to call your attention to the date of September 13-19, 2010 which is National Invisible Chronic Illness Awareness Week.

September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.

There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. You can find more information at http://InvisibleIllnessWeek.com

Thank you so much for passing this along!

(Your name)

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Tags: #iiwk10, awareness week, blog, bloggers unite, blogging for invisible illness week, cancer, Christian, christians and depression, Chronic, Chronic (medicine), chronic illness, chronic pain, Conditions and Diseases, depression, depression and illness, disabilities, diseases, editor, facebook, health, health conditions, hopekeepers, illness, invisible illness, invisible illness news, invisible illness personal stories, invisible illness virtual conference, invisible illness week, invisible illness week conference, invisible illness week seminars, invisibleillnessweek, lisa copen, national invisible chronic illness awareness week, publisher, rest ministries, Support group, symptoms, United State

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