Should I Feel Guilty When I Have a Good Day?
September 8, 2010 by admin
Filed under Guest Blogger Posts
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
September 6, 2010 by admin
Filed under Online Ways to Help, What's New, How to Help
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?
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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You Never Know Who Your Notes May Touch!
September 4, 2010 by admin
Filed under Today's News, Announcements
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?
September 3, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What's New, How to Help
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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Let Your Church Know About Invisible Illness Awareness Week
September 3, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help
Nearly 1 in 2 people in the US have a chronic condition. . . This includes people sitting in pews too! Invisible Illness Week is sponsored by Rest Ministries which is the largest Christian organization that specifically serves the chronically ill.
About 300 HopeKeepers groups exists around the USA and beyond too (find a HopeKeepers group near you or start a HopeKeepers group yourself!)
Pastors actually receive very little education in seminary that specifically discusses how to reach out to the chronically ill. They may learn to counsel a bit, pray, and pray for healing, but 6 weeks later-when the person has not been healed– it can be confusing as to what to say and do then.
Now is a great time to introduce Rest Ministries to your pastoral staff. There are some simple ways to increase awareness, by just emailing your pastor about the event. (A description is below that can be edited.)
If you need something to include on a resource table Beyond Casseroles bookmarks and Rest Ministries brochures are perfect give-aways. If your church will approve it, you may wish to get up and share a bit about chronic illness, Rest Ministries, or your testimony.
We are here to answer any questions! And if your pastor does not seem enthused. . . that’s okay. Don’t take it personally. If you are considering starting a HopeKeepers group or some kind of chronic illness ministry, “How to Start a Chronic Illness Pain Ministry” a new book by our founder, Lisa Copen, has some great tips regarding the emotions of it all, as well as the practical tips.
We recommend sending off a short email to your pastor and let him know that you will follow up with a phone call in a couple days. And then call him! If the pastor is very busy or oversees a huge church, you may wish to choose a pastoral staff member that oversees those who are ill, caregivers, the women’s ministry director, etc. Connect with the person who you believe will most connect with your passion of chronic illness ministry.
September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event began in 2002 by Lisa Copen, founder of Rest Ministries, a national Christian organization that serves the chronically ill and an affiliate of Joni and Friends, the ministry of Joni Eareckson Tada. The week has 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. See InvisibleIllnessWeek.com .
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Let Your Local Illness Organization Know
September 2, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help
Do you have a local association or organization that you know about or attend a support group meeting? For example, the Arthritis Foundation or the Multiple Sclerosis Society are wonderful organizations.
There are literally thousands of them that serve even the rarest diseases. If you can take just a few minutes today or tomorrow and pick up the phone and call a few of them (even just one!) it would help us spread the word.
Wondering what to say? Here is a sample script:
Hi, my name is _____. Is there someone there I could speak with about events or programs?
Hi, my name is _____. I have (name of illness) and I just wanted to let the staff of your organization know about something I am involved with, It’s called Invisible Illness Awareness Week. It’s a national event to increase awareness that about 1 in 2 people in the U.S. live with a chronic illness and about 96% of the conditions are invisible.
[Oh, when is this?]
It is September 13-19, so very soon, but I wanted to make sure that you knew about it. It’s been around since 2002 and during the entire week there is an online virtual conference.
[That sounds interesting. And how you involved?]
Actually, I am just helping out the volunteers in spreading the word. The virtual conference is free and there are other things they are doing as well, such as having hundreds of bloggers blog about invisible illness, that kind of thing.
[I see. And how can I get more information?]
Everything is at the web site invisibleillnessweek.com – There are press releases, a video about the week, media information, etc. If you have any kind of emailed newsletter or place for events to list it, we just want to make sure people know about the free conference.
There are some short blurbs on the web site that can be copy and pasted directly into your email newsletter if you’d like to keep it simple too.
Thank you so much for your time. I know you are very busy and I appreciate that fact that you care.
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Press Release – Invisible Illness Week Bloggers Driving Force Behind Awareness Campaign
September 1, 2010 by admin
Filed under In The News, Online Ways to Help, What's New, How to Help* Feel free to share this on your blog, post it in your newsletter, whatever! Thanks for your help.
Invisible Illness Week Bloggers Driving Force Behind Awareness Campaign
San Diego, CA — (SBWIRE) — 08/31/2010 — National Invisible Chronic Illness Awareness Week, established in 2002, is September 13-19, 2010 and bloggers are a driving force behind the campaign’s success.
“The patient bloggers who participate by using their blogs as a platform to educate and increase awareness is the reason we are able to reach so many people on virtually no budget” shares Invisible Illness Week coordinator and founder, Lisa Copen. “Patient bloggers, as well as those who are health advocates, are some of the most active participants in social media and the causes they care about.”
InvisibleIllnessWeek.com features daily guest bloggers through September 19th that focus on a variety of topics that impact the lives of those who are chronically ill. These include being the spouse of one with illness, learning how to ask for help, and being a part of the patient community.
Anyone can participate by blogging about living with a chronic illness, especially the invisibility factor. Participants are encouraged to sign up with Bloggers Unite Invisible Illness Week’s event at http://ow.ly/2wOzV so that readers can easily find the blogs. Bloggers can also download the badge that declares their intent to blog about Invisible Illness Week or personal issues of living with an illness.
Many bloggers are also participating in the Invisible Illness Week Meme, “30 Things About My Invisible Illness You May Not Know.” This year’s theme, “Each One Can Reach One” encourages people to leave anonymous notes of encouragement, so bloggers are also posting photos of their notes on their blogs.
During Invisible Illness Week people can listen to seminars featuring panels of experts on a variety of topics via Blog Talk Radio. For more details visit InvisibleIllnessWeek.com . The event is sponsored by Rest Ministries, the largest Christian organization that specifically serves the chronically ill.
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Invisible Illness Week Bloggers Make an Impact!
September 1, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help
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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How and Why YOU Can Help Invisible Illness Awareness Week
September 1, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help
National Invisible Chronic Illness Awareness Week starts in just a couple of weeks, Sept 13-19, 2010.
If you would like to be of assistance there are a variety of ways that collectively we can make a huge difference. If you have a few minutes a day over the next couple of weeks, by just making a quick call, sending off a couple of emails, or posting something to your social network can help us spread the word a great deal.
We don’t have a room full of volunteers on the telephones. We don’t have a budget for this undertaking. It’s me (typing this at my son’s karate class and then uploading it tonight after he goes to bed) and YOU! So, can you see why any help you give us a huge help? (smile)
So watch this web site each day (get our emails to make it really easy PLUS you will get our 80-page ebook for free when you sign up with tips for living with chronic illness.
And then, to encourage others, when you do make a phone call or email a newsletter editor, whatever… post in the comments below (each post on the blog has a place for your comments). We’d love to say thanks as well as celebrate with you!
In summary:
Ways to help: watch the web site for specific tips, but ANYTHING you touch on our web site helps. For example, if you are on Facebook you may be familiar with the “Like” button that is on all of our web pages. Be sure to click that so others see. Email illness newsletter editors; email your friends, etc.
Main things to know about II Week:
- Our 2010 Theme is “Each One Can Reach One” – anyone can leave an anonymous sticky note anywhere to share encouragement that someone will find!
- Sign up to receive the daily emails between now and 9/26 and receive our free ebook “Chronic Illness Tips: 263 Ways to Do More Than Just Get By.” This has over 80-pages of tips from the “experts” who live with illness like Jenni Prokopy, Georgia Shaffer, Pam Farrel and more.
- Our main event? Sept 13-17, M-F we will have our virtual conference with 5 90-minute podcasts featuring special guests with topics from coping skills, relationships and finances.
Here is a quick description you can copy and paste.
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. See InvisibleIllnessWeek.com
Lisa
Popularity: 3% [?]
