So we turn to our church for guidance, for acceptance, for unconditional support during the most difficult time in our life.

But churches are made up of people—all of us imperfect. And our church does not always give us what we need; in fact, sometimes, the people say things that hurt us even more.

“Everything will work out fine. Just keep praying.”
“If you just came to Bible study I am sure getting your mind off the pain would make it all go away.”
“You need to keep praying for healing. Remember that verse when Jesus asked the disabled man if he wanted to get well?”

We asked our readers, What would you like your pastor to know about living with a chronic illness and your need to serve others, or be ministered to, within the body?

Here are some of your heart-felt replies.

Please feel free to add your own comments below about what you would like your pastor to know. Remember, this is not a forum to vent about everything your church did wrong, but rather, honestly and kindly tell us what you would like your pastor to know about illness, your life, etc. so that he and the church body can better minister to those with chronic illness.

• I know I am young and you may not believe I am feeling well enough for leadership, but the Lord has worked in my life in so many ways through my illness and I am bursting to be a part of an “illness ministry” to encourage others. Please make some time to sit down and let me share my new calling with you. —Renee
• It is very difficult for me to get to church due to the fact that the services are about three hours long and I have problems sitting for long periods of time. When I come, I have to choose between worship or the sermon. No one ever calls or checks to see why I am not there and I used to be one of their Sunday school teachers. I think they have a problem with the fact that I am one of those that have not been healed. —Doris
• Every time we have gone to church and we have gone for prayer and I have sought out help, people keep telling me one of two things: “Patty, by His Stripes, You are healed. . . You must have faith; if you have faith then you will be healed,” or “You must not be praying hard enough.” I can’t tell you how much that hurts, and how I keep feeling like a failure when I am told that. —Patty
• Some of us simply want to rest confidently in the Lord and rely on Him for provision during long periods of ill health. I want rest, calm and privacy—not to be cut off from kindly connection with people—but not to have knocks on my door at all hours of the day and night, either! —Caron
• There needs to be a ministry devoted entirely to helping others: meals to the woman who just had a baby or rides to doctor appointments. Please help me out by seeing past the “you look fine, so you must feel fine” mentality. —Bridget
• Those who live with chronic illness need understanding first, love second, and challenge third. There are times when an ill person can’t function, and the church and its leaders need to be understanding, prayerful and available—for solving practical needs as well as spiritual counsel. —Kay
• Find out limitations, hindrances to participation. Ask, “What barriers, hindrances are there that prevent you from coming to church, worshipping with us, participating fully?” or “What can we do to help you to be able to participate more fully in church life?”
• Be supportive, take me seriously, not down-playing my illness and yet not drawing too much attention to it either. Suggest helpful tapes, books and articles that help me keep my eyes focused on God.
• I’d like people in the church to ask how they can help me in practical ways and offer some suggestions of what they could do, such as: rides to doctors, doing shopping, baking or housecleaning.
• Invite me to activities even if I probably can’t attend and when inviting, give as much details re the proceedings, program, length, environment, etc as you can. Don’t be hurt if I can’t come.
  —Marguerite
• Even though I went through physical therapy and rehabilita-tion, I was unable to continue working. This was very devastating. In the months following the accident, I learned to rely on my Lord and Savior Jesus Christ for comfort.
• My husband was also disabled and this caused a greater stress. I was most grieved because my church family didn’t visit and the telephone calls were few. Don’t just tell people you’re praying for them. Come pray with them. Don’t ask if there’s anything you can do, come prepared to do!
• Don’t ask if there is a financial need; think of the expenses you have in your household and, if they don’t have an income, there has to be a need. Don’t think that because they aren’t complaining they aren’t hurting. Don’t tell them to “give their problems to God.” Take that person and their problems in your hands and hold them up before God. —Wanda
• Please don’t discuss details of my illness with others without my expressed permission. When someone asks how I’m doing, they don’t need to know that I now have a catheter. Ask me, “When others ask, what shall I tell them?” I will be happy to tell you how much information to share. —Rev. Koiv
• My pastor feels very uncomfortable with people who cannot work hard and “Go! Go! Go!” for the Lord. His sermons are filled with “You must do this and you must do that!” I leave the service beaten up in spirit because my body is unable to “Go! Go! Go!” I fight depression because of the chronic pain and lack of sleep so I’m not “Happy! Happy! Happy!” all of the time. He feels that if you don’t “whistle while you work” then you better get on your knees before God! (Like I could get down on my knees and then get up again?) —Judy
• My church seems to operate under the misconception that a person who is disabled by a chronic illness, as I am, doesn’t need to serve the church. They are content with my just showing up for worship when I am able.
• I feel a compelling need to serve my Lord and my church. But I am no longer physically able to fill any of their traditional roles offered as service opportunities. When suggesting possible alternatives, I am met by rejection where it might cause someone else more work, or they just can’t see out of ‘the box’, or simply patted on the head and told to rest and not worry. This makes me feel useless, helpless, and a “lesser” person in the church – a burden.
• My disability makes it extremely difficult for me to counteract these obstacles – I need my pastor or another leader to champion my cause for me. I need him to teach/motivate others in the church to extend a hand so that I might participate as fully as God allows. —Jean
• As my pain grew worse over time, I realized that I could not do all the ministry that I wanted to do and had been doing; I am the pastor’s wife and was diagnosed with fibromyalgia. It was difficult for me to admit to our congregation that it was physically necessary for me to relieve myself of certain duties since I appeared fine. I periodically missed church, but I tried to go no matter how I felt.
• As time went on, I decided to give up areas of ministry: I quit teaching; I quit singing in the choir; I quit being the secretary. I stood up in a service and, by way of testimony, explained my situation. The people were very supportive and did not look down on me because I was withdrew myself from ministry. Our church was encouraged to get behind me and hold me up. My (pastor) husband made sure that he provided updates on my progress. It was important to me that he validated my illness and supported my decisions.
• It is difficult when someone steps down from ministry in order to attend to the physical needs of their bodies. But God has told us that this is his Temple and we are to take care of it. God sent new families to our church during my time of hiatus from ministry. My husband was very influential in plugging them into the vacant ministries. Because he supported me and my decision to remove myself, others were given the opportunity to serve the Lord and I have been able to focus on my relationship with the Lord more through this time. —Pamela

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

By Claudette Palatsky

It’s not a pretty story all wrapped up neatly, bow nestled nicely on top. Well, maybe it looked like that on the outside—we chronic pain sufferers understand that, “Oh, you look so good.” Looks, though, can be deceiving; appearances misleading, right? Who knows what it took just for you to get out of bed, let alone out the door, so that someone could comment on how wonderful you look behind that grimace of pain they think is a smile.

You would think after more than 20 years of a right relationship with God, in service to Him, seeking Jesus, and loving His Word, that my testimony would be beautiful. So, what a shock to the friend who found me passed out, a bit of vomit on my chest, pasty, and barely breathing.

And then I made a choice

Three days in a coma-like state, almost 2 weeks in the critical care unit, and I won’t speak about the mental ward that followed that!

What a scandal that I had attempted to end my life, to commit suicide. My life? Oh, that is where I took a wrong turn. How dangerous/damaging self-reliance is. I ran off the rails and right onto the gravel road of what A.W. Tozer named“self-sins” (self-righteousness, self-pity, self-confidence, self-sufficiency, self-admiration, self-love, and a host of others like them). I became lost in the self-examination of what I was or wasn’t doing (and the consequent guilt/pride) and looking for results from my own behavior instead of what I already had and what was already done for me, in Christ!

I forgot Jesus paid a price

I lost sight of the fact that I was bought with a price and I was not my own. (1 Corinthians 6:19-20). Along the way I began to listen intently to Satan’s lies. He lulled me to sleep at night with self-loathing and enthused my to-do list with things I couldn’t possibly accomplish. Many who have invisible illnesses know the angst of feeling defeated before even getting out of bed! We lament our limitations and document our failures and dashed dreams on sticky notes that we place all over our self worth.

We Christians in chronic pain, often lose sight of who we are in Christ and the fact that our value is in Him—we are complete in Christ, regardless of our confines.

A time to heal

I’ve been spiritually resurrected during this healing season, only 4 months after I tried to take a life that wasn’t mine to take. (A year ago now.) A friend introduced me to gospel-centered, grace transforming messages that have me preaching the gospel to myself everyday and learning that the Gospel is not just the power of God for salvation, but the Good News I need on a daily basis!

It is all about Jesus, not me. It is His strength, not mine–being perfected in my weakness. It is, in fact, the finished work of the cross of Christ that has me in its grip. There is so much freedom here. I don’t earn more of God’s love, favor, or acceptance through what I do for Him.

With wonder I am seeing Jesus in the right light and the Holy Spirit is gently leading me into all truth. My flesh wants the recognition and glory and always will till the day I die. But my face is turned upward, and my eyes are on my Lord. I acknowledge Him in all my ways, rather than leaning on my own under standing. We both know there is nothing good in me, except Him. And so where sin abounds, grace abounds much more (Romans 5:20).

My mind staying on Jesus–and not myself–will give me perfect peace. It will give you peace in your pain too. Our times are in His hands (Ps.31:15) and we belong to Him, redeemed by His blood, and in His keeping until, in His timing and way, we will be in His Grace and Glory, fully.

More than 12 spinal surgeries to date, Claudette Palatsky lives with daily pain. She wrote a book called THINK IT NOT STRANGE, available at the Rest Ministries bookstore, to help fellow-sufferers and those who care for them. She can be contacted at cpalatsky@yahoo.com. She has spoken at women’s retreats and teas with a message of hope for those who have visited the depths of despair, as she has. Her life is hidden with Christ in God, and she looks forward to that place of no more pain, tears or sorrow, but until that day. . . she lives with her husband of 23 years, in California.

“I wanted to share from a different perspective. Most of the blogs or websites I read seemed to have a negative mood and mindset to them. I understand why, but I also know when facing an illness this kind of mindset is less than helpful. I wanted people to know they can thrive, and not just survive. This ties in with me being a pastor. My whole life wraps around God, and who He is. I believe that God desires people to be healthy, strong, and live a vibrant and whole life.” Chad goes on to explain, “I believe part of my call in ministry is to extend this hope to everyone; this includes those who are sick. So through Living with Arthritis, I share practical things I have learned, and mix in God and the strength and healing He desires to bring, all with the hopes of sharing love and hope to others.

Related articles

• What is the Hardest Part of Living with Illness? Your Responses! (restministries.com)

This life can be hard for many of us to imagine if we are healthy, but consider those moms and dads who are chronically ill; those who face the daily pain and physical limitations at we face living with illness, yet they also have a spouse who may not even be home for months at a time.

Wednesday Jocelyn Green, author of Faith Deployed will share a story with us from her book about a chronically ill mom and wife who is in a military family. The article, “Worn Out and Weary” is by Ronda Sturgill, quite an amazing woman that we featured on the cover of one of our HopeKeepers Magazines [no longer in print] back in 2005.

A couple of weeks ago we asked our readers if there were any military families out there who would be willing to share a look into her life, and Erin eagerly responded. So, I am proud to introduce you to Erin Wang and her family.

Can you tell us about your family and the illness you live with.

My husband and I have been married for almost seven years. I married him late in his US Navy Officer career, and have not had to live with long deployments, but he does travel frequently. We have one five-year-old son. While I have always had chronic migraines and headaches, I was diagnosed with severe fibromyalgia when my son was born while we were stationed in Japan. I still feel like I’m not to the bottom of my diagnosis, as I have new symptoms developing.

How do you prepare for your husband’s deployment in regard to your illness and it’s challenges?

I have experienced being stationed in five places in six years of marriage–and this really has been one of the hardest parts for me as I live with chronic pain and illnesses. Preparing for my husband’s (often overseas) trips has been quite hard because of these moves, and I have had a little-to-no support system. With the stress of a fresh move under my belt, it seems that the first trip my husband takes after each move, my body gives out in some unexpected way, and I’m literally left with no known person to call for help. Calling on strangers in my greatest time of need has not gotten any easier.

Since you likely do not live near family, who is part of your support team?

I hire babysitters off the internet, and have to trust that God will send me the right person. (He has every time!)– though I stress out over doing the process again and again each move, and make sure to stay home in a separate room for the first few times they babysit! This is always one of the first things I do after a move, as I know that that help is the only thing that keeps me going as a mom with chronic illnesses.

I am generally outgoing and push myself to seek relationships quickly with every move– with new neighbors (on and off bases, depending on where we have lived), church members at new churches, and strangers I start conversations with in the stores and schools and at playgrounds of new cities.

But it is often just too physically hard to be able to do the things that build and maintain relationships, when simply getting a shower two times a week is a miracle! And I feel I must hoard what little energy I have to be able to care for my son, let alone make my doctors appointments.

Most Officer’s wives I’ve met are kind, but I have yet to meet one who struggles with daily, chronic illnesses and caring for young children– that would really be a blessing all around

Regardless of who I meet, opening up to new people who don’t know anything about me and my past has been difficult. I have been judged and rejected more often than accepted. With each move, I have joined or started chronic illness support groups, sought out professional counselors, joined women’s Bible studies and couples bible studies, joined a Japanese play-group or two (I speak Japanese and had been a missionary to Japan).

The only success I felt I really had was the emotional support of the chronic pain groups, whether Christian or not. I have a personality that is intensely open and honest about my reality, including that I am a childhood abuse survivor, and I guess I have learned that these moves and building deep-but-brief relationships with “healthy” women is just not what is going to happen for me. But God may surprise yet!

Really, my best support team member is my God! Early in my diagnosis, I really struggled to even go to church or read my Bible for the first time in nearly thirty years of being a Christian. Praying was really just me crying–mad at God! I had been married just two years to my husband– two years to the Navy Life.

I had a six-month-old colicky baby (diagnosed later with Sensory Processing Disorder/ SPD), and had just gone through an international move, among other things! Where was God? It really has taken time to re-build what my relationship with God is. And I am still trying to figure that out. But I know He is faithful. I know God is love.

What are some of the challenges you face as a chronically ill spouse living in military life?

Changing doctors so frequently has been hard as well, as there is no history or continuity of treatment. I have really been learning to be my own advocate and to know my illnesses and medications.

And there is the added benefit of getting loads of “second opinions”! It was my fourth Neurologist on my fourth move that diagnosed me with Essential Tremor (that others had discounted) and persevered to find a medication that helped my migraines for the first time in twenty years of having them. Praise the Lord!!

When you have to move, how do you do this without overdoing physically? Do you have a system you’d like to share?

People joke that I must be an expert mover! That really is not the case– and there are career military spouses out there that have moved many, many more times than me. Every move has been so different for us– by car, by plane, by rental RV. Twice we’ve been given a last-minute change of orders to a completely different country let alone state! And a year in our child’s life brings great changes to how that move will effect him.

Moving is just simply: hard. And in reality, my way of dealing with illnesses and moving has been to trust God with the finances of not moving the “cheap” way. We often chose to do extra things to care for my body like paying for someone to professionally clean our rental before we check out, or like staying in hotels when the movers are packing up or before our household goods arrive to the new place.

We always have the movers unpack as much as possible and open every box in the new house, even if they put things in the wrong places, because then I won’t have to bend and reach and use my painful hands quite as much.

My body will inevitably give out anyway– adrenaline can only go so far so long during a move! But little steps can help, and I always try to find those things that I can do to care for myself.

What advice would you give someone who ill and who has a spouse in the military?

I really don’t know that I would have any advice for other chronically ill military spouses than just to cling to God–even when you’re “mad” at Him for all that is going on in your life and body. He will show you the way to go– what church to go to or not, what new friend to pursue or not.

He will love you with an everlasting love. “You number my wanderings; Put my tears into Your bottle; Are they not in Your book?” Psalm 56:8 (NKJV)

Thank you so much, for sharing, Erin. I have a lot of admiration how you seem to handle it all with grace. Thank you for serving our country through supporting your husband and traveling all over where he is sent.

Through my conversations with Angela Dugi, author of What I Learned Lying Down: Hope for the Chronically Ill, I saw that God did indeed meet her needs during her times of devastation. She struggles with chronic fatigue, lupus, rheumatoid arthritis, fibromyalgia, osteoporosis, and asthma, and yet God has provided for her in miraculous ways. God has used her illnesses to teach her five life lessons:

First, we must gain an eternal perspective

“God used my weekly trips to the cancer center to teach me that, and much more.” Because she is chronically ill, she could empathize with others who were hurting. She knows firsthand (after fourteen years) how encouraging words helped her to survive when she thought she could not make it another day. She wants to make sure others have the Hope in Christ she experiences.

Second, we need to learn to appreciate the little things

Like rain! As with many who suffer with Lupus, Angie is UV Light Sensitive and cannot be out in the sun longer than a few minutes otherwise she faces life-threatening consequences. She was saddened that she could no longer be outside during daylight hours. But, she soon began to appreciate the rainy days as those days she was free to be outside!

Since my life is at a standstill, I appreciate the little things.

Thirdly, we need to discover that it really is okay to be still

One thing about being ill is that you don’t always have a choice of whether you want to rest and be still or not. Angie has had her share of guilt over not being able to do all she planned to do. It was (and continues to be) at those times when God reminds her of Matthew 11:28, “Come to me, all you who are wary and burdened, and I will give you rest.” (NIV)

The Psalms remind us to be still (cease striving) and know that He is God. Angie states that when God asks us to be still, it’s because “He has set you aside for a very special purpose and assignment.”

“One of the treasures I have found is in hearing His quiet voice because
of the many hours I spent lying down.” -Angela Dugi

Fourthly, we need to believe that we can be fruitful in affliction

His power is made perfect in weakness. (2 Corinthians 12) Angie reminds us that, “Jesus doesn’t waste our sorrows or pain. You are of much value to the Lord and He can use you even if you are in bed reading this flat on your back.” We can share the love of Christ in the midst of our pain, finding joy and purpose.

Lastly, we need to rejoice in God’s goodness as he creatively ministers to us

In her book, Angie talks about the many different ways God has encouraged her: from seeing her favorite bird to having neighbors pop in to help. One of the biggest ways God strengthens her is through Scripture. “These scriptures are God breathed words that the Holy Spirit uses to strengthen me so I can make it through another day.”

“I take it [God's Holy Word] like medicine.” -Angela Dugi

Angie is so transparent in how God has used her health struggles to help mold her character and deepen her faith. She is a great example of letting God work in her life. For more on Angie or to get a copy of her book, go to www.be-encouragedonline.com

Bridget Gazlay is a freelance writer and artist (and is also chronically ill). She resides in West Michigan. www.pfccreations.com . ** Watch for more articles in coming weeks from Bridget as she shares the highlights of what she has learned through her conversations with Angela!

Fatigue was taking over my body. I barely had enough energy to dress myself or prepare a simple meal. Earlier that year I had noticed other changes in my physical health. My feet shuffled along, feeling as if they were too heavy to lift, and a slight tremor moved my left hand involuntarily. I dismissed these symptoms as part of the aging process and tried to get more sleep, assuming I was just overtired.

Having been out of work for six months, beginning a new job was a challenge. I suspected the symptoms were evidence of a serious disease. One month after being hired, I went to a chiropractor who suggested I see a neurologist. This doctor visit launched my battle with a condition with which I was unfamiliar.

The neurologist performed a series of tests to assess my balance and physical dexterity.

I was not prepared for his diagnosis

“Darlene,” he quietly spoke my name, “I believe you have Parkinson’s disease.”

That moment literally took my breath away.

Shock waves of unbelief and fear rocked my mind as questions stacked up in my brain like a mound of pick up sticks, difficult to organize.

“What about my new job? Could I continue working? What medications would I need?”

The neurologist’s recommendation was for me to start taking a strong drug. Reluctant to take any medication with dramatic side effects, I was encouraged to go the natural route, seeing a nutritionist who also specialized in treating neurological diseases.

For the next ten months I visited the nutritionist weekly, spending hundreds of dollars on supplements, herbs, and vitamins. I continued to work, but struggled with hours of pain daily and sleepless nights when I would remain awake for hours, praying or reading. It was during these times of prayer I came to realize my only place of relief was in meditating on God’s Word.

These were moments that took my breath away.

I found the Psalms to be an endless source of inspiration and strength. Even the smallest activities formed my prayers to God. Psalm 27 states “The Lord is my Light and my Salvation, whom shall I fear. . .”

The following months were disastrous. It felt like my brain spoke to my body and said, “Quit working now.” My body stopped functioning normally. Muscles became more rigid, any movement was painful, and I was no longer able to care for my own hygiene. My body didn’t have the strength to perform simple functions.

The days became duplicates of one another, each day seeming endless. There was no anticipation of evening rest to renew my strength.

One evening as I prayed, I was reminded God is my strength. God is with me. It was a moment that took my breath away as I realized the presence of God was in my room–waiting to provide the strength I needed.

But where is God in all of this?

As my strength and mobility diminished I was convinced that I was dying. My youngest daughter moved back to California from Minnesota to help care for me. In spite of the prayers of hundreds of people I was not getting any better.

Appointments with three additional neurologists yielded no recommendations with which I felt comfortable.

For the next eight months, I was surrounded by enemies of fear, self-pity, and despair. The lights had gone out and I was in complete darkness and could not see the way ahead – moments that took my breath away.

As I lay on my back in bed, there was only one place to look. Up!

I again discovered that the Lord was there with me every second. . .

. . . not necessarily relieving the pain, but giving me the strength and courage to go through it.

The light of His promises came flooding back to my soul.

The Lord is My Light.
The Lord is My Salvation.
The Lord is the Strength of My life.

Darlene Palermo has an M.A. in Human Development Counseling and lives in Southern California. She believes that she has been given this gift of a debilitating disease because it gave her a greater appreciation for those who are chronically ill.

She plans to use her experiences to encourage others whose lives have been changed. With over 30 published articles, she says, “I’ve discovered my writings afford me a connection to the outside world and the opportunity to provide encouragement to others and to myself.”

Matt and Rachel

By Matt Horne

Caring for a chronically ill wife is not what I had envisioned when I was working up the nerve to ask out “that hot girl” who would later become my wife. We were in college and she was on the cross country team. She let me know very early on in the relationship that she had a chronic illness.

Nowadays, it’s just part of life. I’m pretty sure I wouldn’t know what to do with myself if she were well.

There’s a reason I call her “Super Rachel.” On her good days, she can run circles around me–cleaning, getting things checked off her to-do list, and having tons of fun. She’s amazing.

On top of that, she has the greatest attitude and rarely lets her condition get her down. As her dad says, she’s an “overcomer.” Instead of having a “why me?” attitude, she says “what can I do to fix it?” She also has the tendency to volunteer for more than she can handle, but I digress. . .

Here are some tips about the logistics I’d like to pass on to help other couples who are coping with chronic illness:

Career

Super Rachel can’t work sometimes. A couple years ago, she was working part-time, working on her Master’s degree in Exercise Physiology, and working as a Graduate Assistant at the university (to pay for school). She crashed. We worked it out so we don’t need her income and she can stay at home trying to feel better.

Priorities

She was forced to reevaluate her priorities. Rachel used every ounce of her energy to please everyone else and live up to their expectations. Sometimes she was not physically able to drive home at night and I would have to put on my shining armor and drive my mighty steed (Ford Ranger) to pick her up. We had very little free time as a couple. At that time, she decided to put God first and her family (me) second in her life. School, work, and everything else is important, but not that important.

Now that she’s feeling better, she only works 2 days a week and we carpool, so she doesn’t have to drive herself. Working two days a week at the doctor’s office is the peak of her current physical ability, but she has the opportunity to help others with the same chronic condition she has.

Mobility

I searched on craigslist.org for a walker and a go-cart. (Yes, I call it the go-cart. Yes, I know I’m wrong. It is a mobility scooter. No, I won’t change.) I got the walker for $50 ($175 off) and the go-cart for $300 ($1,000 off). The walker helps her get around the house when she’s at her worst health-wise. The go-cart helps us get the shopping done, among other things.

Shopping

I used to get really frustrated when she said she had enough energy to go shopping, but didn’t. Invariably, when we got just about five items down on the list, she would need to quit and go home. I had probably 25 more things to get. It really made me angry sometimes, but it wasn’t her fault. The walker and the scooter dramatically changed things. Now, for the first time in her life, she actually enjoys shopping.

Independence

To help her be more independent on her bad days, I installed a hand-held shower head in the bath tub and bought a shower chair. Now she can clean herself most of the time.

Comfort

We used to sleep on an incline, so there wouldn’t be as much of a change for her when she gets up in the mornings. This is a common treatment for Postural Orthostatic Tachycardia Syndrome.

Cooking

It is very important for her to be able to eat when I’m not home, even when she can’t stand up. If you can’t stand for more than a few seconds, you obviously can’t cook on the stove top. We try to get a good number of things pre-cooked and in the freezer for her to re-heat and I’m not talking about “healthy-choice box dinners” either.

We like to do what is called “Once A Month Cooking,” or OAMC. We’re not very good at doing it regularly, but if you do it right, you can have wonderful dinners & lunches for very little cost, and it’s all home made! With OAMC, you create a plan, buy your stuff, cook all day, and then freeze it for later. Sometimes all day Saturday spills over into part of the day on Sunday.

When she’s desperate for some nutrition and doesn’t have the energy to cook, she uses the walker to get to the kitchen, musters what energy she has to get the food from the freezer to the microwave, and then sits down on the seat of the walker (or the floor) while it cooks. After that, she can eat right there in the kitchen. Some days, we use the bar stool in front of the stove or sink so that she can get some work done.

And I almost forgot – I do pick her up and carry her sometimes!

Tomorrow Matt will Share. . .

How a Husband Can Encourage a Chronically Ill Wife – The Spiritual and Emotional Stuff

Matt Horne is the wife of Rachel, who lives with Postural Orthostatic Tachycardia Syndrome (POTS) and fibromyalgia, among other conditions. They have been married since December 2006 and Rachel is currently pregnant with her first child. Matt is the youth pastor at the First Baptist Church Hebron in Carrollton, Texas. You can visit his web site at http://www.matthorne.info .

In coming months I will be sharing more of your testimonies about your involvement in small groups, the Sunroom, on Facebook, daily devotionals–wherever Rest Ministries has touched your life. Print, audio, or videos are all welcome if you’re interested in sharing. Lisa

From a woman we will call Samantha, who has been a part of a HopeKeepers in Southern California that has met for over 10 years.

I was a young Christian woman, just starting my career, newly in love, and full of hopes for the future.

Then, one day, chronic pain entered my life and set up a long-term stay. Now, over 20 years later, I live in constant severe pain.

Do I have many moments of questioning, tears and frustration? If I said I didn’t, I’d be giving false testimony, and worse, making it harder for someone who is reading this to believe that there is such a thing as solid hope even when one is living through intense suffering.

No, I haven’t found an answer, medically, for my chronic pain, but I found these things, which are so valuable. . . a God who suffers alongside me and does not turn His back on me, a group called–of all things–HopeKeepers (R).

The group has co-suffering servant-hearted leaders who are incredibly accepting and inspire me to spiritual maturity, brave fellow seekers and believers who listen and care and pray and allow me–in my brokenness–to listen to, care, and pray for them in return.

I am now still a young Christian woman, still growing in love with the same devoted man, striving to understand the riches of God’s Word, still leaning hard into my Savior.

What have I learned through HopeKeepers? Simple–No one gets through life without pain. The blessed ones are not those who live without heartache, obstacles and pain, but the ones who, in pain, in struggle, have love, hope and support in their very soul because of the giver of hope.

I invite others with whom I cross paths who are suffering to join us in community as we endeavor to keep our hope, right where it needs to be–in Christ.

Are you interested in starting a HopeKeepers group?

HopeKeepers is the small group program of Rest Ministries that meets in churches and communities around the world. Rest Ministries provides help in starting your group, materials and resources, tools such as training DVD to help increase awareness of (mostly invisible) illness in your church, and opportunities for networking with other leaders.

To find out more visit the “Start a Group” section of our web site.

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I recently asked her to share a bit more about herself that I could share with the Rest Ministries family.

My ministry verse is 2 Corinthians 1:3,4: “Blessed be the God and Father of our Lord Jesus Christ the Father of sympathy (pity and mercy) and the God (Who is the Source) of every comfort (consolation and encouragement) Who comforts (consoles and encourages) us in every trouble (calamity and affliction) so that we may also be able to comfort (console and encourage) those who are in any kind of trouble or distress, with the comfort (consolation and encouragement) with which we ourselves are comforted (consoled and encouraged by God.” (Amplified version)

I found Rest Ministries in 2004. I was trying to recover for months from a exploded ulcer that should have taken my life. I was struggling to come to terms with the fact that I would not be able do all the things in our church that I had been doing over the years. I felt like I had been put on the shelf by God, but He was preparing me for one of the most fruitful times and joyful in my life.

One day I was searching for encouragement on the internet. I felt lonely and isolated. Was there anyone who understood?

Up popped RestMinistries.com . I clicked on the link, learned about the Share and Prayer message board, and joined it. I started to receive the support and understanding that I needed from people who understood chronic pain and illness. I also learned about the yahoo email group, Splashes of Joy. [Editor note: These are now groups in the Sunroom.]

I joined and found wonderful, giving women, who loved me, prayed for me and counseled me. All these years later, I still treasure their friendships.

Now, I am able to use the love, encouragement that I received, to help others that feel lost and alone. I have found that ministering to others not only encourages them, in their faith, but also encourages me. God is using all the experiences I thought of with pain and regret, to minister to others, turning the bad to good as Romans 8:28 tell us.

It is so important to know that you do not have to suffer alone, that there are others, who truly understand. I feel more at home here then most any place else. I am “normal” here, not the one who is “different.”

Hugs,
Marney

Thank you, Marney, for making a daily difference in so many lives!

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I don’t share this to glorify myself with your kind compliments, bur rather to encourage you to allow yourself to admit when you are struggling. Because see what happens? I am no different than each of you. Our story of faith and illness together is an amazing testimony.

Carefully choose who to reveal your challenges with, but be willing to take of the mask off, the one behind which you may pretend everything is okay. Your transparency and willingness to share that you are in pain. . . but STILL trust God completely, is more of a witness to our Lord than anytime our life is at ease.

Thank you, friends. {hugs} Lisa

FEB 2010: He hurts when we hurt and He is close to the brokenhearted. So wherever you are right now, and I know that many of you are in a much more difficult place that I am, cling with me to Psalm 34:18 “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”

To be honest with you, I am not in a place right now where I am shouting about God’s goodness from the mountain tops. I know I should be, because He is Holy and should be praised regardless of our emotions. But I am in a place where I am emotionally kneeling before Him with my head resting on my hands, and just waiting. I am overwhelmed with His presence beside me, and yet I do not hear His voice. I just barely feel His light touch on my back.

He promises to us in Isaiah 43:2 “When you pass through the waters, I will be with you; and when you pass through the rivers,they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

Whether you are passing through deep waters, or walking through flames right now, He is with you and I. There is no answer other than to simply cling to God. Cling to Him. Nothing in this world will make any sense, but at least together, we know that we are not alone. He will not allow the flames or the waters to touch us.

Lisa

I read your precious letter with interest and understanding. As a Hope Keepers chapter leader and fond recipient of the daily devotional, I want to thank you for persevering in the midst of restrictions. On a side note, a comment you made seemed to leap off the page to me: “Yet I do not hear His voice.”

Can I tell you something? That was the most refreshing thing I read. You see, when I was diagnosed with Parkinson’s the same week that my dear dad died, that was not the low point. It was when I ceased hearing God’s voice in the way I had been accustomed to for over 30 years of walking with Him. I felt so abandoned, even though I knew the Truth–that He would never leave me nor forsake me. Except for a few brief times, it has remained that way. Perhaps He is training me to walk by faith and not by sight (or inner sound?) I have acclimated to the silence, of sorts, and am at peace with just trusting and resting in Him. I have ceased striving and am learning to understand, in a deeper way, that He is God. ~K.

Thank you so much for this note. Usually your writings leave me very upbeat and filled with joy, but I have to admit there are tears flowing now. Gentle tears, but this note hit me at the very core of my being. Our roads are very long and rough, and even though we believe in the faithfulness of God, the stones still hurt, and we still get very tired along the way. Thank you for reminding me I am not alone in this journey. There are lots of us who go through this and God is always with us and will never let us down. Even if I can’t shout for joy, I can be quiet and wait for God’s touch. Thanks for continuing to share so much of yourself and your journey with us. Will continue to keep you and Rest Ministries in prayer. ~R.

I am sorry for all that you are going through. It is amazing that no matter how much physical difficulty and emotional pressure you’ve been under, that God gently uses your mind and hands to be able to minister to us and be an ENCOURAGER to us. Don’t we wish we could touch the tip of Jesus’ robe like Mary did and be healed? But as we know, His healing comes in many disguises, and not as we envision them. God’s mighty hand be upon you and heal you. Bless you for all you are to your family. If people have to do read a little less of you because you need to be there for your kids, that is where you should be. ~J.

Thanks SO much for this message to us this morning, Lisa. I REALLY needed it. The fibro pain and fatigue is going crazy, and I’ve had a week of migraine headaches and just feel like things are falling apart. All you do means SO, SO MUCH, and it means SO MUCH to know that I am not alone and others understand. Thanks SO MUCH, hope that you’re having a GREAT DAY! God Bless! ~B.

Your life touches so many people in special ways and God is truly using you to spread His Word that we can trust Him no matter what happens in our lives. Whenever I read a message from you, I feel so encouraged because I become more aware of how important it is to share our struggles and trials and encourage each other. Your ministry is so important and such a blessing. We are all with you as you are going through trials and struggles and you are in my prayers. Know God is watching over you and using you to help our faith grow stronger.
Take care of yourself and continue to live one day at a time knowing everything will be OK because we have God. ~P.

Lisa, thank you for your openness and honesty. Many of us in leadership roles look to others like we cannot be touched by all the woes that come with chronic disease. Lisa, you are my inspiration with all you do. You do so much for others and I know God smiles down on you! Just let me encourage you that He loves you very much and sees your struggles. I consider you my friend and wish I live closer to help you. ~E.

I am not going to say much. I feel like I am just coming out of the pits and I am just enjoying resting in God’s grace and beauty right now as well as the beauty of the Spring. I was touched by your message and I am sorry for your losses and I prayed for you today. I did not know that rheumatoid arthritis could become this difficult this quickly. ~N.

You are a precious sister in the Lord and I value your every word! I have so been througgh those valleys too, yet the Lord has NEVER left my side. Every where I turn I see the hand of our Father God. Not always removing us from the storm but always holding our hands and helping us endure till it passes. You’re in a valley of sorts right now. But your mountain top experience is coming! It always does when we finally walk out of the valleys, but while in the valley, take time to just sit at his feet. Your day of shouting is just around the corner! I will keep you in my prayers. Remember you are loved and this experience we have here are but “light afflictions.” JOY will give you strength to endure. Smile, sweetie, Jesus loves you and one day in Glory, we’ll be able to meet up and hug and laugh together. Gentle hugs, Z.

Here is my question for you… How can you more effectively use your PAIN and even emotional struggles to encourage someone else today? What does that look like? Is there a neighbor who you know cannot walk well, and you’ve been meaning to go over and say hello? Is there someone you know who would appreciate a phone call from you to encourage him or her? How can you make a difference in someone’s life today–despite your illness or limitations?

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I recently had the blessed experience of chatting briefly with book author Cindy Tuttle, who has written “Joining in the Dance of Life” and recently released “Finding the Light of Jesus” both available at Amazon.com and Barnes and Noble. I feel privileged to share this interview with you about her new book.

Meet Cindy Tuttle, Author

Cindy, please tell us a little about yourself and what inspired you to write “Finding the Light of Jesus”.

Thank you Debbi for letting me share “The Light of Jesus” with you. I have been honored to have worked with people with severe mental illness for over twenty-five years. I’ve also worked with adults and children who were profoundly retarded and people who are elderly living in long term care hospitals. They taught me so much about how to live our faith.

As a child I was sexually abused and almost killed by two teenagers. Because of that and other abuse I went through some very rough times. Getting counseling and my faith brought me through and I am so grateful!

I have been involved in many ministries in my church including lecturer, choir, home visits, prayer leader, religious education, Eucharistic minister, etc. I completed four years of lay ministry classes.

I have been fortunate to have been published in thirteen periodicals and have a book recently published called Finding the Light of Jesus by Crosslink Publishing.

As I mentioned I am so grateful for what Jesus has done for me. I know of no other way to thank him than sharing the compassion and encouragement He has given me with others. Any gift he has given me I feel is to be given away. In one of my prayers I mention how when I come to him when I die, my heart will be empty because all my love will have been given away. Of course some of it to me, because without taking care of myself there would be nothing to give away. I would be constantly yearning for love from others. That is why I wrote Finding the Light of Jesus. To share what I have been given with people who might be hurting and/or want to grow in Christian faith.

What is the key message in your book that you would like your readers to grasp?

The key message is – no matter how we feel or what situation we are in, Jesus calls us to be His beloved child. Once we experience this love we then have a strong desire to live the love we have been given.

Has your background in human services, as well as your lay-work in spiritual retreats influenced your thoughts in your writing? If so can you share a little with us “How you feel this to be the case and why”?

They have had a strong influence in my writing. The spiritual wisdom I have learned from people with severe disabilities is incredible. They have taught me what is really important. What we need is not necessarily what we want. What culture says is important at times is not the truth. When people have severe pain as the people have in your ministry, they find the true gifts that give life and love. In facilitating my spiritual retreats one person was at the beginning stages of dementia yet the care and respect given her by the other people at the retreat and the spiritual wisdom she shared I will never forget.

She seemed so grateful that she was being heard and the love given her. Her smile during the retreat still warms my heart every time I think of it. She wasn’t seen as a patient but as our brother and sister in Christ. What a wonderful day that was!!! Experiences like this helps shape my writing.

What made you chose the title: “Finding the Light of Jesus”?

I chose the title because the light of Jesus is everywhere and sometimes we may forget how close His light is. To me His light is compassion, strength, faith, and the eternal light of our soul. Experiencing or finding that light is joy beyond words. I never tire of hearing people tell of these experiences. In fact that might be my next book.

Finally to round up, Can you let our readers know “why” you feel they should purchase your book and what they might expect to gain as a result?

We all feel lonely at times and have challenges in our faith and trying to live out our faith. Finding the Light of Jesus offers a variety of ways to help us in our faith. The prayers settle our hearts and souls so we are open to read the reflections in a prayerful mindset. I give suggestions on how we can live our faith and also provide pages for journalism.

I have prayers towards the middle of the book for times when we are lonely. I also have a part called “Conversations With Jesus”. I provide a dialog of some of the feelings we have and how Jesus might respond. If you want a book that includes spiritual reflections , prayers that touch the soul, clear suggestions for living our faith, and a book that is ideal for prayer groups, support groups, churches, religious education, and Christian social service programs, this is the book for you!

You can find the link on www.cindytuttletheauthor.com. If you are a group leader this is a very helpful book for a lesson plan and reflection questions and prayers that will generate a prayerful environment and spiritual insight.

To discover more about this Cindy and her new book please visit her web-site and to view the promo from her book: “Joining in the Dance of Life”

Debbi Farmer is a retired homeschool teaching mom, who presently has opened her fun-dream “small business” even while facing many health challenges in her life. Debbi has worked many years with Rest Ministries in both the “Beyond Surviving Homeschool” forums as well as writing devotionals for the “Chronic Illness” forum. She has had many short stories, devotionals, as well as poems and gospel songs published over the years, and is now presently enjoying life with her husband of almost 30 years, walking where the Lord leads us.

So often we think that our story is not dramatic enough to really be a “testimony” or that the dailyness of our life with illness is not entertaining enough to share in the church setting. But more than anything people crave authenticity and Vicki stepped forward to share her story. Be sure to read the end of this to hear the response the church had.

Most of you know me. My name is Vicki Glover . What some of you do not know is that I live everyday with 4 invisible illnesses. I suffer with frontal lobe seizures, arthritis in my spine, depression, and a chronic pain disorder called Complex Regional Pain Syndrome in both of my arms. Chronic meaning the pain never goes away and never will.

This next week is set aside to raise awareness not only for the diseases I suffer with but all Invisible Illnesses that anyone suffers with. September 13-19th is Invisible Illness Awareness Week.

Invisible illnesses are all around us everyday. They are not just the diseases I suffer with, but there are many more. Many suffer with depression, migraines, cancer, hearing loss, blindness, pain, lupus, fibromyalgia, chronic fatigue, spinal problems, crippling arthritis, and the list could go on. They say 1 in every 2 people suffer with some kind of invisible illness. Look around you. Around half of the people here today are suffering with at least one invisible illness. What makes them invisible is that the individual does not use a wheelchair, cane, or any other assistive devices to get by with their daily lives, but they still have a disability that limits their lives and how much they can do.

Many depend on the help of others to get through the bad days. I call my bad days flare-up days. Those are the days when I feel like my body is on fire and my pain level is way above a 10 and the pain medicine I take won’t touch the pain. Those are the days when I sleep a lot and depend on my family to help a lot.

Our biggest challenges are those around us. Most don’t understand what we are going through. So I want to try and help you understand a little from my point that might help you understand everyone that you see who is fighting an illness.

• We smile not because we are feeling better, but because we don’t want to look sad all the time. Don’t think just because we look happy the pain is gone. We are just hiding it well.
• If we park in a handicap parking spot and we don’t look handicap to you, think again. We may just have a disease or handicap you cannot see or we may be in a lot of pain. Offer us help instead of judging us. We would appreciate the help.
• If you come to our homes and it looks like a tornado has hit the place, it hasn’t. We spend the little time we do feel good doing the most important things first, which is usually things with our families. Housework will always be there, our families and children will not.
• Any help offered is greatly appreciated because energy is scarce.
• Don’t ask “how are you doing?” unless you really want to know.
• Don’t give advice on what might fix the illness. If there was a cure we would know by now, and we have tried just about everything that is a possible cure because really we don’t like living in pain.
• Don’t stop living your life just because we have to slow down ourselves. We want you to continue to have fun and enjoy life. We have just as much fun watching you have fun as we did having fun with you when we could. Just remember when we need to stop and rest, just let us without making us feel guilty.
• When we need to stop and take our medicine or stop to rest we need to right then. If we overdo things we don’t just get tired, we pay for it for days. Please understand.
• If we make plans to do something with you and have to change those plans at the last minute, we are sorry, but we have to listen to our bodies and stop when it tells us to. But please don’t stop inviting us because we still enjoy being with our friends and enjoying life.
• If you have questions about our illness, don’t be afraid to ask. We don’t mind answering questions so you understand. How will you learn without asking.
• These are just some points I can make on behalf of myself and others that suffer with invisible illnesses. I know each illness is different and each person is different, so there is so much more to learn from each individual.
• Reach out to those that are hurting and suffering. Like I said at the beginning I suffer with depression, which was brought on by the illnesses I deal with daily. Pain that never goes away will tire the body out, but it also tires the mind out. Some days you get so tired of fighting the pain that you want to give up. Depression is a big factor that faces almost everyone that has a chronic illness whether invisible or not.
• Depression is 15-20% higher for the chronically ill than for the average person Many times with the depression comes thoughts of suicide because the pain gets so severe you just want it to stop. 70% of suicides have uncontrollable physical pain as a factor.
• If depression does not get the best of you, the illness usually affects your family and your marriage. The divorce rate among the chronically ill is over 75 percent. That is a very high percentage. If you don’t end up in divorce, it still affects marriages in many other ways. Your spouse is afraid to touch you in many ways because they are afraid of hurting you. Lack of sleep keeps you both so tired to have much of a relationship.
• Financially your family starts hurting because of doctor appointment bills, medicine costs, gas for trips to doctors, and medical tests. You start feeling even more depressed because you see your family having to do things that you should be doing but are unable to. It is a vicious cycle that can eventually tear a family apart. Only strong families usually survive when a person is suffering with more than one illness and a lot of stress is put on the family.

Our strength has come from God to hold our family together. We have been through all and God is holding our hands and our family tight. I have accepted God has a purpose for my illnesses. I have had some ask me if I believe in healing because I have been sick for over 4 yrs. I believe that God can heal, if He wants to heal.

Sometimes we are left in our illnesses to use for His glory and to be healed in heaven, and I believe that is my case here. We are all to take joy in our trials. They make us stronger. Some days I may not feel stronger physically, but God has a plan and I know He is working on me spiritually just as He is with everyone fighting an illness. I just ask that you pray for those you know that are fighting any illness, seen or not, and remember those this week especially fighting the invisible illnesses everywhere.

Vicki shares, “God used [this] in wonderful way. What happened afterwards was something God must have had planned. A young child in our church is going through tests right now and the family is waiting on the results. They brought their daughter forward to have the elders pray over her and for her, because if the test come back with the results the doctors expect, the results are a one-hundred percent fatality rate for the little girl. We know God can still perform miracles and to look at this little girl you would not think she was so sick.”

I asked Vicki how people responded. “When I got done reading you could have heard a pin drop in the church. I know it was the quietest I have heard the church –ever. There were not even whispers during the reading. Even the teens listened intently. I know because they all sit in the first three rows and they all sat looking at me and listening, even those who usually pass notes during service. One gentleman asked for a copy for his wife who does not come to church but is suffering at home. I gave him mine.”

Thank you, Vicki, for sharing from your heart and in doing so encouraging others, both those with and without illness. You have blessed more people than you may ever realize.