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 lisa copen

Lisa’s Testimony

It was an average afternoon, but I was about to receive a telephone call that was far from typical. After four weeks of debilitating pain that was quickly spreading throughout my body, I had changed physicians and found one who was willing to run tests to discover what was causing the pain.

“The test came back positive. It’s rheumatoid arthritis,” she told me.

“Okay,” I said, trying to grasp the impact this simple statement would have on my life. “On a scale of one to ten, ten being normal, what’s the best I can ever hope to feel again?” I asked, wanting to know what lay ahead.

“If you’re really lucky,” she said sadly, “maybe a six.”

Life was about to take an unexpected detour, throwing me on a journey I never would have imagined.

At the age of 24, I had a promising future. I was nearly finished with my bachelor’s degree and working for a large non-profit organization, gaining experience that I hoped would help me in my career as a fund-raiser and special events planner. I was dating a man whom I adored and hoped to someday marry.

Most of all, I felt that God had truly led me to the large city I was in, a thousand miles away from my home and family, to serve Him. Although His plans had not yet been revealed, I began to believe it would somehow be in the form of ministry, as I thoroughly enjoyed my part-time work as a youth director for a local church. Terms like chronic illness, auto-immune disease, and non-steroidal anti-inflammatories were not a part of my vocabulary.

IT ALL BEGAN ONE MORNING. . .

I awoke to a swollen wrist that was unable to bend without excruciating pain. I assumed that it was a simple sprain and I wrapped it and went on with my day. Although the pain subsided, it returned within a few days and was surprisingly in the other wrist as well. Within days the pain went to my left elbow, then the right elbow, the left shoulder, the right shoulder and then the hips, knees and feet.

My supervisor at work was sympathetic and told me to do as little work as possible for the time being. My physician insisted that it was just tendinitis. Although I didn’t have the symptoms of tendinitis, she refused to run any tests

When I found myself unable to go to work one morning, because I could not rotate my wrist enough to open my bedroom door, I knew that something needed to be done. I called and made an appointment with a doctor of internal medicine. She intently listened to my symptoms, ordered tests and lab work, and called me in a matter of days with the results

I began to read all I could get my hands on about this disabling disease and repeatedly found phrases that described rheumatoid arthritis as “a debilitating illness” and “a crippling disease.” I asked, “Lord, what are you doing here? How am I supposed to do your work and live with this illness? I thought that you had great things in store for me, but instead it looks like you are going to waste the gifts that you have given to me.”

I called my pastor and friend, Harry, who I knew also lived with rheumatoid arthritis. What a joy to have a friend who could say, “God is in control,” but who could also say, “I’ve been there. It’s not much fun, but I’m here if you need me.

I quickly became educated that the numbers of Americans with rheumatoid arthritis is about 2.1 million people. Rheumatoid arthritis is an autoimmune disease where the lining that surrounds the joints become inflamed as part of the body’s immune system activity fighting against itself.  According to the Arthritis Foundation rheumatoid arthritis is one of the most serious and disabling types, affecting mostly women, often between the ages of 20 and 45. When people said, “You are too young to have arthritis!” I knew my facts.

THAT WAS IN 1993. . .

I have found that, of course, God knew what He was doing all along, as His plan has been revealed. Since my diagnosis I have finished my degree, gaining insight into what it’s like to go to college with a disability. I married the man I was dating, and had tears in my eyes as he smiled at me and pledged “in sickness and in health.”

And rather than working for a non-profit organization, I began my own. Despite the medications and physical limitations of having a child we adopted a newborn baby boy in 2003, Joshua Aaron.

Following diagnosis I volunteered for professional health organizations and was surrounded with people who said, “How do you keep such a positive attitude?” “What keeps you going?”

I also witnessed many people who were hurting, not just physically, but emotionally and spiritually, and I knew that they needed to hear about Christ’s unconditional love.

After searching for a book, an organization, or a support group that addressed chronic illness from a Christian perspective, and finding none, I felt God calling me to His purpose for my life, to begin a ministry for people who live with chronic illness or pain.

I cornered Joni Eareckson Tada at a book signing and said “Is there a ministry like yours but for people with illness, because I need it! But I don’t want to duplicate something that someone else is already doing. She sweetly said, “No one else is doing it.” And in some way told me to “go for it.”

HOW IT ALL STARTED. . .

In 1996, I began writing a newsletter, …And He Will Give You Rest, and people quickly responded. In 1998, Rest Ministries, Inc. became a non-profit 501(c)(3) organization and began to reach out not only to individuals, but churches, providing tools, education and resources, so that they can more effectively meet the needs of the chronically ill in their church and community. (http://www.restministries.org).

In 2004 we began HopeKeepers Magazine and in 2008 Hope Endures Radio Podcast.

Every day is painful. Despite various medications, accompanied by a multitude of side effects, I have never experienced remission or even slight relief. My body seems to have aged 50 years in the last five. Each day is a challenge. Yet, I do not complain of this, for I have found joy beyond anything I could have ever discovered without my illness.

I have learned an appreciation for life, an intensified joy of family and loved ones, a compassion for those who are hurting, and the ability to offer sincere understanding to those who feel devastated.

WHAT KEEPS ME GOING. . .

Each day I am reminded that it is only through God’s strength that I am able to pull myself up out of bed, get to my computer and reach out to others, encouraging them to keep reaching out Jesus Christ. By answering a simple email, sorting a bulk mail, or writing the newsletter, I have found a peace in my pain that passes my understanding. knowing that I am making a difference in someone’s life whom feels alone and isolated in his or her physical pain. Nearly 1 in 2 people in the United States live with a chronic condition, so if it is not you, it’s someone you care about.

And I feel truly blessed to be able to use my love of writing and encouraging others through many ways such as authoring books, tracts, etc. which all allow more people to know about Rest Ministries, and therefore, what God can do with their broken bodies.

This is how God works: through each of us reaching out to others, despite our circumstances.

The doctors say that soon they will begin to remove some of the bones in my feet so that I can continue to walk. Both shoulders and both knees need the joints replaced and my hands continue to function less each day. I had the flesh eating bacteria in an ankle wound in 2008. 2009 brought 4 new silicone joints in my left hand. So far 2010 cataract surgery is scheduled and perhaps a surgery to fix one of my fingers that didn’t heal correctly from my joint replacement surgery.

New medications give some hope, but they also have side effects, sometimes intense enough I have to go off of them. The damage that has been done will never be able to heal. Despite the challenges, I cannot imagine not continuing to give everything I have to this ministry God has given me.

There are too many people hurting who are looking for healing in New Age remedies, such as hypnosis, “psychological cleansings,” and places other than the healing that can be found in Jesus Christ. Healing comes in many forms and whether one is physically healed or not, one can find joy, peace and grace in our Lord and nothing can replace this.

2 Corinthians 1:4 has come alive for me. “He comforts us whenever we suffer. That is why whenever other suffer, we are able to comfort them by using the same comfort that we have received from God.”

Over 300 HopeKeepers groups exist. We are the founders and sponsor of National Invisible Chronic Illness Awareness Week, exposing our ministry to hundreds of thousands (over 25,000 from MySpace in just a few month’s time.) It’s with great joy and humbleness we are now an affiliate organization of Joni and Friends, her organization.

I hope that as I continue this journey of living with a chronic illness I will be able to reach out to others and, through Jesus’ love, help them become wounded healers, able to minister within their pain, to others who are hurting and bruised by life’s detours. Each of us has our “thorn,” but it is up to us what we decide to do with it to bring God the glory.

Never believe that I am anyone special. God can use you and your weaknesses in the same way He was used mine. He can also create the perfect plan to give you passion and strength for things that you love in the midst of His plan for your life. I know people come to my web site and think, “Oh, she has it all. She has a husband who loves her, a child, a ministry. She can’t really be in that much pain.” The truth is that yes, I am very blessed, but yes, myself and my family have also been attacked spiritually in many ways and it’s by the grace of God–truly–that this ministry hangs on when I feel so overwhelmed and inadequate at it all.

Be open to what God has planned for your life. It may come in gift wrap that you don’t like! But it will be the perfect gift He has hand-selected just for you!

Rest Ministries On TV This Weekend

red-tvOver one year ago I had a film crew who came to my home to tape a segment for a television show. It was exciting, but before the airing date, the program was discontinued.

Well, the show has been picked up by a tv show called “Heroes Among Us” and the producer who taped my segment was notified yesterday afternoon that the show is actually airing today and tomorrow (Sat and Sun). You can check your local listings here http://heroesamongustv.com/listings.htm for times.

It will be airing both days. Next week we should have a DVD that we can post online. (I’ve not yet seen the program myself!)

Please pray that we are able to reach many with the Good News and the fact that our ministry exists! This is a secular program, so the fact that they chose a Christian ministry to feature is truly a blessing.

Please forward this to anyone you think may be interested!

Lisa

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HopeNotes is Up to Read

Our August 26th edition of HopeNotes is now available to read! Lots of news about Invisible Illness Week stuff, our new web site, Facebook groups, and don’t miss the supplemental posts that our editor makes throughout the week at her blog under “Hope Notes News.”

August 12th HopeNotes is Ready

13topimageOur August 12th edition of HopeNotes is now available to read! And don’t miss the supplemental posts that our editor makes throughout the week at her blog under “Hope Notes News.”

Aug 5th HopeNotes is Up for YOU!

Our August 5th edition of HopeNotes is now available to read!

This is a “special” issue where Lisa catches you up on life’s happenings (the silly and the serious.)

Don’t miss the supplemental posts that our editor makes throughout the week at her blog under “Hope Notes News.” Although you will find more fresh information at the Invisible Illness Week site as Lisa prepares for this week in September!

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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!

ii2009logo-300pixels-low-resolution-animated-for-web

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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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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