Archive for invisibleillnessweek
9/13-17 -National Invisible Chronic Illness Awareness Week, San Diego, Virtual Conference – HOST
9/24-26 21st Century Book Marketing Conference, San Diego Hilton By the Bay – ATTENDEE
1/14-17 Joni and Friends Affiliate Conference, Agoura Hills, CA – ATTENDEE
I am up and at the computer about to start day 2 of National Invisible Chronic Illness Awareness WeeK. Your prayers have been so appreciated and I am thrilled that day 1 worked out so well with no technical glitches, no computer errors, etc.
This year I really wanted Georgia Shaffer to speak and Monday morning was the only slot she had available since she had a full week. (Thanks, Georgia for squeezing us in!) So we kicked things off and jumped right into talking about how we deal with our difficulties in life in different ways. We had over 200 listeners for our first show so we were off to a great start.
I have a pumpkin candle to create some atmosphere in my office, but am too scared to light it, so instead am just spritzing pumpkin room spray around. It smells like fall. I keep trying to turn and prop my feet up on a chair. My feet are swelling again and I don’t know if it’s the weather, or due to sitting so long here, or the angle of the chair. I keep moving everything to try to rotate positions.
Next was the 12 pm show. Jennifer Jaff shared some wonderful insight into insurance issues and also what to do when we have a pre-existing condition. This seminar is one you will want to listen to and have a piece of paper ready to take notes. She gave a lot of web sites that are helpful as well, all of which are available at her web site. And just a reminder that her services with her organization Advocacy for Patients are free (yep, you read that right.)
After the second show the phone rang and it was my parents. My mom said, “If it’s okay, I have a plane ticket I can get.” Okay? Yes! My parents had just returned from a trip to TN the day before (after being stuck overnight at SF due to plane issues). I hadn’t asked her to come for II Week because I didn’t think she should be returning from a long trip and then fly down here. She has her own chronic illness issues. But she said, “If you can do this, I can get on a plane. This is why I retired. ” Thanks to Dad who encouraged her to go and gave her 20,000 of her airline miles so the ticket was affordable.
My son gets out of school each day at 2:20 and I have shows at 3 and 5:30. Let’s just say I was desperate enough for childcare, after asking everyone I knew, to post it on Facebook. I figured maybe someone from Rest Ministries would know someone in San Diego and they could watch Josh in my home while I was just in the other room. But my mom is a’comin and should be here by noon today.
I explained to Josh’s teacher that this week was chaotic, and not normal, and that my mom would be picking him up the rest of the week.
If I sounded a bit frazzled when I first came on the line with Joanna Faillace for the 3 o’clock show it was because I picked my son up from school at 2:20. We ran home, I handed him milk and a snack, threw his karate uniform on. Packed him a snack to take. He said he’d wait in the driveway for his ride. I told him he could wait in the house, but he was feeling like a big boy and when I called “I love you!” he hollered back “I love you too.” Ahhh….
Just as we went live he appeared in my office and said, “They aren’t here yet. I’m thirsty.” I hit the mute button and said, “Go back outside. She’s coming. Milk is int he cooler.” I started the show and mouthed to him “I can’t talk” and waved. He went back outside and stood out there to wait for one of my dear friends to pick him up and take him to karate. I left her a bag of mail to drop into a mailbox even. Thank you, Shelley!
Once Joanne started talking I muted myself, took off the headset and ran out there to see if he was still there (Sorry, Joanne!). I had told him to come tell me when Shelley got there. He was gone. So was the mail. Okay…a kidnapper wouldn’t take the mail, right?
I ran back in and was back on the show. Joanne had a wonderful presentation about eating right, foods that are super-naturally healthy, and as always when I talk to her, I came away with some simple things I could easily do to improve my health- and dare I say – even metabolism. Now there is some motivation! I was glad I was keeping my food diary yesterday because I was stressed out enough I would have been eating more than I should.
I got off the phone and called Shelley to make sure she had Josh. They were finishing up karate learning cart wheels and then she was taking him to another a friend’s house to play. I called and left messages for my husband to pick up Josh (“I don’t have the address. He’s playing outside. It’s 2 or 3 houses down from Shelley’s house. Call me if you can’t find him.”) I reminded him to pick up drugs for me at the pharmacy too after work. And then left 1 more message to pick up eggs.
We had our last Invisible Illness Week show of the day with Maureen Pratt who was calming and talked about having joy and gratitude despite illness. We had some wonderful encouraging calls (I love it when you call in!)
We finished at 6:30. I called my mom to make sure she had her ticket. I called Joel to make sure he found Joshua. They were looking for a clean restroom somewhere near the pharmacy (2 stores didn’t work) and they got home after 8.
I worked on blogs and answered emails until then they arrived home. Gave my kid a big hug and told him how proud of him I was. I grabbed a Nutrisystem lasagna and we ate at 8:15. I had Joel show me how to get the video game out of of the Playstation and then I went to Blockbuster at 8:45 to drop off movies and games that–if were not returned by midnight 9/14–we’d be charged for.
My husband volunteered, but actually I just wanted 15 minutes in the dark car alone and I blasted the “Our Hope Endures” song by Natalie Grant. I just picked up the CD last week as my “gift to myself” for this week and love her song “Our Hope Endures” that came out around the time I started Hope Endures podcasts last year. I will post a link to it later. Amazing song, and lyrics about a friend of hers that has cancer.
Got to bed by 10. Got back up at 10:30 and worked till 11:30. And -praise the Lord, slept!
I woke up at 5 a.m. and prayed for my mom who was just arriving at the airport to fly out. She should be in Seattle now (Eugene to Seattle, to San Diego is how it works.)
Got up at 7:15. I haven’t showered yet but I did throw on some clothes. I had a quick breakfast, watched 10 minutes about remembering Patrick Swayze on the Today show (sad), spent a few minutes in prayer and am going to be answering emails until the show starts with Pam Farrel (so excited to have her!). Then I hope to prepare a bit for the shows today, especially the one I am supposed to be doing on starting a business, since our second scheduled speaker had to cancel due to a family emergency. I have orders to send to our warehouse, and then need to grab a bite to eat.
Please keep us in prayer today. The shows, guests, listeners. Our guests that had to cancel have unspoken prayer requests. My mom’s best friend is 80 years old and having open heart surgery today too. She went into surgery at 7 a.m. and it should last 4-6 hours. So many people are hurting, including many of our speakers who are all coping with their own illnesses, and still doing the shows for all of us.
I hope that together we can reach out to everyone who needs reminded with the Lord’s love and hope.
God bless you, friends. Thanks so much for your support.
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We hope you will join us during some of the seminars for
National Invisible Chronic Illness Awareness Week starting tomorrow (Monday, Sept 14)
All times are pacific time, USA
Listen here http://www.invisibleillnessconference.com
Find out all information , speakers and more at http://www.invisibleillnessweek.com
Feel free to pass this along! (In fact, we’d LOVE you to do so!)
MONDAY – 9 AM
Understanding How we Uniquely Deal with Difficulties in Life
MONDAY – 12 PM
Finding Health Insurance Coverage with a Pre-existing Condition
MONDAY – 3 PM
Super Foods for Super-Natural Health
MONDAY – 5:30 PM
Hearts of Gratitude and Joy
TUESDAY 9 AM
Coping with Chronic Illness in Your Marriage
Bill & Pam Farrell
TUESDAY 12 PM
Coping with Crises on Top of Chronic
Jennifer Saake & Lisa Copen
TUESDAY 3 PM
How to Start a Business When You are Chronically Ill
TUESDAY 5:30 PM
To to Be Announced
WEDNESDAY 9 AM
It’s OK to say NO: Building Healthy Boundaries
WEDNESDAY 12 PM
Parenting When You are Chronically Ill – Chaos and Confessions
Dena Dyer, talking with Lisa Copen
WEDNESDAY 3 PM
Simplifying Your Home and Housework
WEDNESDAY 5:30 PM
Real Talk About Men and Chronic Illness
THURSDAY 9 AM
Find the Job You Desire and Can Do
THURSDAY 12 PM
When Your Child is Chronically Ill
THURSDAY 3 PM
Managing College with a Chronic Illness
THURSDAY 5:30 PM
Helping Others Understand Your Pain
FRIDAY 9 AM
Applying and Winning Disability Assistance When You Are Chronically Ill
FRIDAY 12 PM
Being a Teenager with a Chronic Illness
FRIDAY 3 PM
Curtis Dean Hall
FRIDAY 5:30 PM
Lisa Copen and guests
SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.
In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.
Well known Christian authors who will be presenting include:
- Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009)
- Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008)
- Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009)
- Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008)
- Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional
- Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
- Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005)
- Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005)
- Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004)
- Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)
Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional roller coaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”
Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”
Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”
Rest Ministries extends their outreach about invisible illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.
Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, “It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week, which they sponsor annually.”
One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.
*Source: Chronic Care in America, U.S. Census Bureau
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