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 Invisible Illness Week

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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30 Things About My Invisible Illness You May Not Know

Get your own list and answer and send it on at invisibleillnessweek.com

Prize Give Away! Fill out #iiwk09 meme “30 Things About My Invisible Illness You May Not Know.” Copy it from our web site here: http://invisibleillnessweek.com/?p=2301 – Share it with others via Facebook “notes”, your blog, etc. THEN… post a COMMENT on our blog http://invisibleillnessweek.com/?p=23 w/ the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.

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  1. The illness I live with is: rheumatoid arthritis
  2. I was diagnosed with it in the year: 1993
  3. But I had symptoms since: a few months before diagnosis
  4. The biggest adjustment I’ve had to make is: everything-life was never the same and I am always in pain
  5. Most people assume: RA is an inconvenience, that is doesn’t impact every part of your life and every movement you make
  6. The hardest part about mornings are: getting up, I am very stiff and sore
  7. My favorite medical TV show is: It was “ER” for years. Stopped watching a few years ago
  8. A gadget I couldn’t live without is: a jar opener
  9. The hardest part about nights are: actually sleeping, and getting all the pillows in the right places
  10. Each day I take about 20 pills (including vitamins)
  11. Regarding alternative treatments I: am open to ideas, but prefer to do my own research not get advice
  12. If I had to choose between an invisible illness or visible I would choose: invisible
  13. Regarding working and career: I was discouraged I couldn’t fulfill the plans I had, but I’ve found God had something better
  14. People would be surprised to know: how deformed my hands and feet are. That the arthritis is in every part of my body, not just “a place.”
  15. The hardest thing to accept about my new reality has been: Seeing the progression of the breakdown of my body, despite the medications and knowing the older I get, the harder surgeries will be to recover from.
  16. Something I never thought I could do with my illness that I did was: go on roller-coasters! We recently went to Disneyland and I just “did it.” And climbing up slides at the park when my son was a toddler and needed help going down.
  17. The commercials about my illness: are nothing like reality. They are very deceiving about most illnesses I think.
  18. Something I really miss doing since I was diagnosed is: being carefree, being able to walk on sand down to the beach and just walk forever along the coast.
  19. It was really hard to have to give up: being creative with my hands like cross-stitching, quilting, etc.
  20. A new hobby I have taken up since my diagnosis is: creative things on the computer like digital scrapbooking
  21. If I could have one day of feeling normal again I would: Run. Play with my son, throwing a Frisbee, playing volleyball, running on the beach.
  22. My illness has taught me: that life is precious and not to take moments for granted or to take the health of your family for granted. We never know how much time we have with those we love.
  23. Want to know a secret? One thing people say that gets under my skin is: I’m so glad you are feeling all better now!”
  24. But I love it when people: actually follow through when they volunteer to help me with something. It’s so hard to ask for help, and then when the person changes plans at the last minute because it’s just inconvenient for them, it can be difficult for a person with illness to find a back up (I’m thinking of generalities here, not a specific situation.)
  25. My favorite motto, scripture, quote that gets me through tough times is: “My comfort in my suffering is this: [God’s] promise preserves my life.” Psalm 119:50 I put it in my emails and when I autograph books.
  26. When someone is diagnosed I’d like to tell them: You are not alone in this. It will be hard, but the most important thing is to turn to God, not away from Him. And to find a friend who understands and will listen to you when you need to talk.
  27. Something that has surprised me about living with an illness is: The amazing people you meet who have so much joy and strength in the most difficult of circumstances.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Just drop by for 5 minutes with a latte or dinner.
  29. I’m involved with Invisible Illness Week because: I want people to know they are not alone in their illness journey and that there is hope and joy despite the pain.
  30. The fact that you read this list makes me feel: thankful that you cared enough to be informed about illness, because with 1 in 2 people living with an illness, there are many others you know who can use your encouragement and support. Thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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6 Reasons I Support Invisible Illness Week

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  1. Surprisingly, nearly 1 in 2 people in the USA have a chronic condition and most of them are invisible.
  2. There are too many people suffering silently, believing no one cares. I want them to know I do care.
  3. I will likely accidentally say the wrong thing at some point, but I still want to learn how to say what encourages someone with illness best.
  4. 70% of suicides are the results of “controllable physical pain.” We never know that we may be the last person someone looks toward for hope and a reason to live.
  5. Illness is one of the most lonely experiences a person can have. It doesn’t have to be that way.
  6. People with illness are often bombarded with advice. I want to be a safe haven for those with illness who just need someone to listen.

Add your own, edit, and tell someone!

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Why I Began Invisible Illness Week

09_logo-facebookThe last couple of weeks I’ve been juggling more stuff preparing for Invisible Illness Week whihc is Sept 14-20, 2009.

Our web site for #iiwk09 (as known in the Twitter world, you can follow me here) is at www.invisibleillness.com .

You can find articles, guest blog posts, and even a “blog tour” where I am interviewed on different web sites about Invisible Illness Week.

I began this in 2002 and the week has only grown and reached more people because of readers like you who tell their friends about it, post something at Facebook and join our “cause” group there, pass out cards to their support group, and much more.

In fact, the best way to share my heart with you about why I do what I do is to just post my interview here (see above).

National Invisible Chronic Illness Awareness Week is the annual outreach where Rest Ministries steps back from our every day events and and really shares with nonbelievers where we find our daily strength despite our illness and pain. [And I have to say, it annoys some people that a Christian group came up with this event!]

It’s a time we can invite people to our online seminars during our virtual conference, and give them the chance to be encouraged (and not judged… which many people are in their every day lives.) I hope you will support our efforts by heloing in any way possible. There ae lots of ways to get involved –most of them free and with just a few minutes of your time.

Thank you in advance and thanks for your prayers in pulling this off. With God’s strength (and my surrender — a big challenge) I know it will turn out wonderfully!

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Host Interview with Lisa for Invisible Illness Week Blog Tour

handstypingGuess what? Lisa is doing a blog tour to help spread the word about Invisible Illness Week and we are opening up our calendar so book your blog today! The tour is July 27 – September 13th and Lisa hopes to help spread the word about Invisible Illness Week! How does it work?

You sign up for the day that you would like to post an interview with Lisa on your blog. Lisa has answered a variety of questions about NICIAW and you will receive a unique “article” to post—meaning each post may say something similar but the article in itself is unique.

(We are pointing that out because many blog tours provide all blogs with the same exact article, which can cause Google to see it as duplicate content. The wording of the article for your blog site will be completely unique, so Google will actually like it!)

We provide the article with hyperlinks already embedded into the code and graphics that you can upload.

When you sign up you can also submit 2 questions of your own to Lisa that she will answer and email back to you to post with the interview. You can write the intro paragraph, change the wording of the questions, make it sound “like you.”

We are excited to reach many blogs that represent a wide variety of medical professions, as well as illnesses. If you have to wonder if an illness “applies” – it does. And invisible illness can be anything from cancer to migraines, bipolar disorder to lupus, or fibromyalgia to autism. bk_beyondcasseroles

Every blog host will receive a free copy of Lisa’s book, “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s a paperback book but we will be giving away a free pdf digital version.

Thank you for your influence in the illness community by sharing your own experiences as well as bringing people together. Once your date is confirmed we will:

  • Post your participation on our Twitter accounts, Facebook, My Space, etc.
  • The day your blog posts we will post it on our Twitter as well. We will do a Twitter post of any blog hosts who have a Twitter account
  • It will be added to our mass calendar for II Week
  • The schedule will be announced via a press release at SBWire.com where it will also hit Google News. The schedule will also be posted on all of our social networks, Invisible Illness Week web site, illnesstwitters.ning.com and more.

We are excited to let people discover how many spectacular health, illness and medical bloggers are out there. If you are interested in hosting, please click here to sign up ASAP to grab your preferred slot!

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Article on Health Care Reminds Us 50% Live with Illness

newsppaerThere is no perfect solution to health care politics, but I read an interesting article this week called “Uncle Same MD? Not So Fast” from the SF Examiner you may also be interested in.

It says,

The Business Roundtable, which represents some of the country’s biggest corporations, found that for every $100 the U.S. spends on healthcare, our main competitor countries — the United Kingdom, Canada, Japan, France, and German — only spend about 63 cents.

The author of this piece, Peter Pitts, who is president of the Center for Medicine in the Public Interest and a former FDA Associate Commissioner, also states this:

The final step the administration should take is to fight chronic disease. Seventy-five percent of the $2.2 trillion this country spends annually on healthcare goes towards treating chronic illnesses like diabetes and cancer. And roughly half of the American population is suffering from one or more chronic illness.

I found it encouraging to read that someone actually is acknowledging that nearly 1 in 2 people in the US live with a chronic illness. These are statistics I discovered years ago and started using by taking the number of people in the United States and dividing that by the number of people who reportedly live with illness (about 133 million).

As we grow closer to National Invisible Chronic Illness Awareness Week in September, I hope to let you know of more articles that remind the public of just how many people do live with chronic conditions and need support. We are not a “niche market.”

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