Archive for chronic illness
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
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!
Does your church know how to reach out to people who live with chronic illness?
How should you react when God doesn’t choose to heal?
When are casseroles and get-well cards not appropriate? If you’ve ever wondered about the do’s and don’t’s of witnessing to someone with a chronic illness, you won’t want to miss this!
- Lisa will lead you through how your church can more effectively outreach to people who live daily with illness and pain through her own experiences and stories of others.
- You will be given an opportunity to see “church” through the eyes of someone in pain, and recognize the small changes that your church can make to have a more effective illness/pain ministry to hurting individuals.
Appropriate for churches, church leadership or conferences. 50 minutes, but can be adapted.
How to Help a Hurting Friend
Have you ever had a friend who was hurting and you didn’t know what to say? How do you know when to quote the Scriptures and when to just listen? If someone you care about lives with chronic illness, grief, or emotional pain, you won’t want to miss the opportunity to learn how to be a good friend. If you live with illness or disability, you will smile in understanding as Lisa shares her experiences and the stories of others who live with chronic illness. The time spent will give you a sense of relief and comfort, as you learn how to express your sincerity to hurting friends.
Appropriate for Christian and secular audiences. 45 minutes, but can be adapted.
When we live with illness, we often feel frustrated with our ability to make plans and goals. Dreams fall aside as we just try to get through life. How do we continue to pursue dreams?
- Which ones does God want us to keep?
- Which ones should we give up?
- How do we decide?
This upbeat, realistic look at dreams will hit home for anyone who has experienced life that comes after chronic illness.
And even when Lisa discusses the difficulties of these choices, her sense of humor will keep you smiling.
Appropriate for Christian audiences. 45 minutes.
This article is free to reprint. Keep everything “as is” and include the resource “box” at the end that refers back to Rest Ministries. Thank you! ~Lisa
Communicating with Your Spouse About Your Chronic Pain
“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.
“Actually, I sort of feel nauseous too,” I share. “It’s probably just the drugs. I wonder if I should eat something or if that would make it worse. I’m sure it will pass if I can just get to sleep.” I look over and he is already starting to snore.
For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, our spouse may sympathize and be more loving toward us.
Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real. It’s no longer “all in our head.”
Galatians 6:2 tells us “Carry each others burdens, and in this way you will fulfill the law of Christ.” At some point we must carry these burdens to the Lord, as well as a close friend, rather than just count on our spouse to carry the burden of listening about each ache.
Although your spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch someone you love be in pain and not be able to fix it. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couple outings you once took together when you could do physically active events, whether it was skiing, or just taking long walks together on the beach. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.
Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?
Be a team with your spouse
It’s you and your spouse “up against” the illness. Although you may feel like your spouse is merely a spectator, intentionally make him a part of your team fighting the battle of pain, in whatever way he is most comfortable.
Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub that bathroom but, let him know before the grime gets out of hand.
Connie Kennemer lives with multiple sclerosis and she candidly shares that struggle that it can be to find the right balance and word. “I am not as mobile as I used to be and I often ask more of my husband such as ‘Can you work at home this afternoon?’ or ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”
Be reasonable in your expectations
We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.
On the flip side, maybe you are emotionally overwhelmed the diagnosis and you need to just sit back and take it all in before you start doing research, while your spouse is spending hours at the computer finding out everything he can on the latest treatments, medications, and signing you up for the healing service at church. He may accuse you of being in denial about it all, since you aren’t showing as much passion as he is in finding out more about your illness. An excellent book recommend in helping you understand your communication styles better is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.
Have information about your illness available for when he is ready
If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’s find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”
Creatively keep him informed about the embarrassing parts of the illness
If your illness is going to cause you to be in the bathroom during eighty percent of the events you attend together, you need to let your spouse know that this is part of the disease. Health organizations have brochures on symptoms. You can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every detail if you can.
Look for other ways to vent besides always dumping on your spouse
“I realized that I held onto all of my frustrations of pain during the day and then ‘threw’ them at my husband as he came in the door,” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for our entire evening and even though I felt better, he felt worse, and it lasted all night. He was beginning to dread coming home at night.”
Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”
Find some ways to get involved in your community or a special hobby
What else do you have going on in your life, other than your illness? It’s easy to be overwhelmed with doctor’s appointments and just maintaining our illness, but it can result in a pretty dull life. Even if you have limited energy, do something you’ve always wanted to do that doesn’t have a deadline. Put together memory albums for your grandchildren, clean out just one drawer, find a new craft or hobby, volunteer to be on a prayer chain. Soon you will find that your illness actually is the last thing you want to talk about when you have had such more interesting events in your day.
So. . . How much is too much? It’s different for each person and each marriage relationship. Learn to look at your situation objectively. How many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Do you need understanding? Validation? Perhaps you need actual physical help with tasks. Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?
And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”
And then when you want to share more about your pain or illness say a prayer first: “Lord, You know I don’t want to burden anyone else, especially when they cannot fix it. I really need a hug from you right now. I know that my spouse cares about me and wants to encourage me, even when he doesn’t always show it the way I want; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”
For more articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible chronic illness Awareness Week.
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Are you a Christian mom with a chronic illness who has kids under 10… or just remembers having kids under 10? If so, you may want to consider adding your input to my new book for chronically ill Chistian moms!
If you sign up for this “group” Christian Moms with Illness Book Team you will only be notified of what I am looking for for the book: example, anecdotes, advice, your stories, etc.
Your replies will not be public, and this is not a group where you will send emails to other members. It’s just a “tool” to be able to reach you and I will let you know if your suggestions make it into the book!
I am also looking for moms who also have the illness but may be the caregiver for someone else, moms with illness who have ill kids, single moms, etc. If you are an adult who grew with with a chronically ill mom, I also have some question for you!
If you are a mom and you have an illness you qualify.
I look forward to working with you!
PS: Looking for mom support? Visit our Sunroom Groups:
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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