The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for #iiwk09

Invisible Illness Week Thoughts – Day 1

woman-pjsI 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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Who is Talking About What for Invisible Illness Week Conference?

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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!)

SEPT 14

MONDAY – 9 AM
Understanding How we Uniquely Deal with Difficulties in Life
Georgia Shaffer

MONDAY – 12 PM
Finding Health Insurance Coverage with a Pre-existing Condition
Jennifer Jaff

MONDAY – 3 PM
Super Foods for Super-Natural Health
Joanna Faillace

MONDAY – 5:30 PM
Hearts of Gratitude and Joy
Maureen Pratt

SEPT 15

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
Kirsten Borrink

TUESDAY 5:30 PM
To to Be Announced
Kelly Rouba

SEPT 16

WEDNESDAY 9 AM

It’s OK to say NO: Building Healthy Boundaries
Jenni Prokopy

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
Marcia Ramsland

WEDNESDAY 5:30 PM
Real Talk About Men and Chronic Illness
Jeff Kenyon

SEPT 17

THURSDAY 9 AM
Find the Job You Desire and Can Do
Rosalind Joffe

THURSDAY 12 PM
When Your Child is Chronically Ill
Jolene Philo

THURSDAY 3 PM
Managing College with a Chronic Illness
Lynn Royster

THURSDAY 5:30 PM
Helping Others Understand Your Pain
Karen Richards

SEPT 18

FRIDAY 9 AM
Applying and Winning Disability Assistance When You Are Chronically Ill
Scott Davis

FRIDAY 12 PM
Being a Teenager with a Chronic Illness
Naomi Kingery

FRIDAY 3 PM
Surgery Preparation
Curtis Dean Hall

FRIDAY 5:30 PM
Closing workshop
Lisa Copen and guests

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Christian Illness Ministry Sponsors 5-Day Virtual Conference Online

09_logo-for-blogSBWIRE – 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.

See http://www.invisibleillness.com for more information or http://www.restministries.org for the sponsor of this event, Rest Ministries.

*Source: Chronic Care in America, U.S. Census Bureau

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Call For Submissions: Invisible Illness Hosts Grand Rounds Blog Carnival

We are honored to be hosting Grand Round 8/18/09, the largest medical blog carnival online.

I am looking for any blog topics related to living with an invisible illness, treating invisible illnesses, having a family member with one, caregiving, etc. Posts can be casual from a patient perspective, or more formal from a medical professional background.

Details are here: http://invisibleillnessweek.com/?p=1811

Submit here:  http://tinyurl.com/nznvak

Deadline for carnival is 8/16, but we also have guest bloggers for our Invisible Illness Week web site. II Week is 9/14-20, 2009

If you can forward this on so we get some great submissions that would be so appreciated!

Lisa

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Interview with Lisa About Invisible Illness Week

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people know about the event and how it can specifically encourage you.

Tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

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LC: Yes. Often I refer to it as just Invisible Illness Week or NICIAW. Our
mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

Its also a great chance for people with any illness to be involved in a national
event to increase the understanding of their own particular disease. They can
use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

Explain to me what a virtual conference is.

LC: The virtual conference is a unique opportunity to “attend a conference”
without having to get out of your pajamas! The main event of National Invisible Chronic Illness Awareness Week is this 5-day virtual conference–which is all completely free–September 14-18. We have 20 speakers who are experts in chronic illness and their specific area and each will be giving a 40-minute seminar and then taking calls from our listeners live. The seminars are M-F, 4 times a day, and will feature a variety of topics such as going to college, the challenges of marriage, applying for disability financial assistance, cleaning and organizing, finding the right job, faith, preparing for surgery, parenting, and many more.

You can listen to them all free live, or later on your computer, even download them from itunes. Or they can be purchased on a CD.

Really? So are last years programs available too?

LC: They are. Before last year we used a chat room and had written transcripts, but 2008’s can be listened to free from your computer, downloaded from itunes, or purchased on a CD.

I know a lot of us would love to attend a 5-day conference on how to better cope with chronic illness, but because of our illness, traveling, finances, sitting for so long, and other factors, it just isn’t possible, so this is perfect.

LC: Isn’t it? There’s a certain amount of irony that we began doing the virtual
conferences years ago, but now a lot of companies and organizations are choosing this option instead of an actual conference because of the economy.

Tell us why you started Invisible Illness Week? What made you see this as necessary?

LC: For a few reasons. I began Rest Ministries in 1997, a Christian organization for people who live with any kind of chronic illness or pain, because I saw the need to connect with others who are going through a similar journey in their life. We are also the sponsors of Invisible Illness Week.I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all.

But I also heard from family members, caregivers, doctors, churches, etc. who really did want to know how to communicate better with those who had a chronic illness. They tried to say the right things, but it was usually the wrong thing, and so they ended up just withdrawing from the relationships.

When illness and pain is invisible it can make it extremely hard for healthy
people to grasp the significance of how much it changes one’s life. It’s easy
for one with illness to become bitter when the people they love the most may
not even believe the illness exists or that it’s being embellished. It’s all
very sad, and I felt more communication was necessary.

People I know have explained this kind of thing to me before. It does sound familiar.

LC: It does sound familiar, doesn’t it? Even those of us who would say we cope
pretty well with a chronic illness still have moments when our frustrations
can get the best of us. It can be as simple as legally parking our car in a
handicapped parking spot and someone walking by gives us “the look”
of skepticism. Or maybe one of our dearest friends innocently asks, “So,
you must be feeling all better now, right?” There is a big difference between
being sick and having a chronic illness and most people don’t grasp that difference.

This is what motivated you to begin an invisible illness week? To increase the communication about all of these issues and emotions involved in living with an illness or pain that no one can see?

LC: Yes, I saw such amazing people who survive against all odds and still had
hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It really doesn’t matter what illness we have, where we live, what age we are,
how long ago we were diagnosed, etc. The fact that most of our illnesses are
invisible and not seen by people gives us a lot more in common that most of
the physical symptoms of our specific illnesses ever could.

What illness do you have, Lisa?

LC: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed
in 1993 at the age of 24. A few years after my diagnoses I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I’ve never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and that in some ways I’ve been very blessed, but I’m also going through the emotions of my illness becoming more visible. My illness isn’t just painful every day now, but it’s hard to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but I’ve been in a new season this last year and have many surgeries in the near future.

I heard that you type with just a few fingers.

LC: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but
I usually want to talk too fast and it can’t keep up.

09_blogging-badge2How can people get involved with Invisible Illness Week and find out more information?

LC: I’m so glad you asked because just by getting involved in helping us spread the word, like by reading and sharing about this blog, is one way to be part of our grassroots effort. I hope its rewarding for people to know that they
are making a difference just by introducing others to the virtual conference.
Everything can be found at our web site National Invisible Chronic Illness Awareness Week , including some fun items like buttons, bumper stickers, tote bags, pins, and silicone bracelets that say, “Invisible Illness, Visible Hope.”

This year’s theme is “A Little Help Gives a Lot of Hope.”

We are also accepting blogs from people to be featured on our site as a guest
blogger. And we have a place to sign up to commit to blog on the topic of invisible illness on one’s own blog. You can join our cause on Facebook and share it with others, tell people about our video, our twitter facts about illness, things like that. Tell your doctor, counselor, pastor, colleagues; we have brochures available too.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it’s listed in Chase’s Annual Events journalists can tie in the personal story with the annual event.

Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?

LC: Absolutely. Exponentially! For example we’ve done a series of tweets on
20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

Over 1800 people have joined our cause on Facebook. We’re giving away prizes to people who blog and tweet on the topic.

We both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?

LC: Truthfully, if I could I would just sit beside them and give them a gentle
hug. I struggle with the ability to sit and not say anything, as I typically
want to start problem-solving immediately. But I know most people feel that
no one is ever willing to truly listen to what they are going through and all
of the emotions involved with it. They don’t have anyone to talk to or be vulnerable
with.

Secondly, I would want to validate that the feelings that they are experiencing that no one understands–well, it’s true. Unfortunately, their experience is unique and no one can truly know what it’s like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn’t need to be. There are a lot of ways to build relationships with people who do understand more than they may expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.

And lastly, since my faith is in the Lord, I would want them to know that regardless of what negative experiences they’ve had with churches or Christians, they may want to give God a try. He can give comfort that we just cannot get from any person. And they can still have God’s “Plan A” for their life. The illness hasn’t messed it up and bumped it down to “Plan B.” I know
that sounds cliche, but I hear stories of this every day and have found it myself to be true.

You have a book out that gives people ideas about how to help a chronically ill friend, don’t you?

beyond-cassroles-bookLC: I do. It’s called “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creative and memorable ways  to show someone you care. We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them. JOY stand for “Just Offering You” and one
can fill out what they are able to offer (errands, laundry, taking your child
for a play date, etc.) and when the best time is for them to volunteer to help.

What a great idea. It seems like it would be easier to accept help if it was in the form of a gift certificate.

LC: Yes, that is the idea. Groups like a support group or a women’s ministry
will find these perfect, but they are also nice for anyone who wants to help
a friend and say, “Here is what I can do to help and a good time for me.”

Thank you again for joining us today, Lisa. Thank you for organizing Invisible Illness Week. I know with your own health issues and that you are also a wife mom it can’t be easy.

You are right, it isn’t, but its more than worth it! The people I meet or
email each day keep me going and I have a husband that is incredibly supportive.

I hope your readers will head  on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. Its going to be a great time!

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