Hope for Haiti

Haiti. It's all over the headlines. It feels overwhelming, a world away and yet too-close for comfort. And we feel helpless. What can one person do in the face of so much anguish?

Jenny from Simply Delightful Designs knows that while just one person may not be able to do a lot, when we band together we can become a strong force. On her Hope for Haiti blog, many wonderful women and companies are donating items and services to this online raffle for proceeds to go to Red Cross and Compassion International.

Raffle tickets are only $1 per entry and some of the prizes are valued at several hundred dollars! Along with my offer of $30 dollars worth of your choice of Affordable Mineral Makeup™ products the raffle items include everything from blogging conference tickets to photography sessions, books, jewelry and art. Such a great selection of prizes, and all funds raised for a wonderful cause!



Together we can make a difference! Please visit Hope-For-Haiti.blogspot.com and share what you can. Every dollar helps, and you might win a great prize too! Thank you for helping to bring a glimmer of hope to such a hurting slice of our world!

Hope in the Shadows

Have you ever heard someone describe a time of trial as, “living under the shadow of [xyz]”? My shadows have included infertility, grief, depression, chronic illness and more. I'm sure you can plug in your own "xyz"s; maybe cancer, abuse, loneliness…

Job and the Psalmist talk of “the valley of the shadow of death.” Shadows impress a dark picture of gloom and heaviness in my mind.

Hope demands I give shadows another look... [To read the remainder of this article, please visit (In)Courage where you can also enter to win a copy of my book, Hannah's Hope.]


Keep scrolling here for a great list of verses that reflect God's sheltering shadows in my life.

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One way God seems to work in my life is through “theme word seasons,” specific life lessons He wants to drive home with me and situations that bring those themes to light over and over until I finally begin to grasp a small portion of what He longs to teach me. Wait resounded in our hearts through the loss of our business and the struggle for my husband to find a new career that truly fit, all in the midst of infertility's endless cycles of hoping and hurting, wanting and worrying, coping and crying.

Waiting has given way to new horizons, a series of theme seasons too numerous to list here, but with one of the most recent being Hope. And then to Hope, God’s spent this year adding the active pursuit of Joy to my life as well. Here are some of my favorite resources from these three themes:

Wait:
- Hannah’s Prayer Ministries offers support through fertility challenges, including infertility or the death of a baby at any time from conception through early infancy.
- A Graceful Waiting by Jan Frank
- The Wait Poem by Russell Kelfer (Truly beautiful book, with a written message even more powerful than the photos! This poem was life-changing for me and has been impactful in many lives.)

Hope:
- Out of the Valley Ministries, Inc. Postpartum Depression Support
- Grieving the Child I Never Knew by Kathe Wunnenberg
- Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss by me, Jennifer Saake :)

Joy:
- Rest Ministries provides support in the face of chronic pain and illness, including National Invisible Chronic Illness Awareness Week each Sept.
- Rain on Me: Devotions of Hope and Encouragement for Difficult Times by Holley Gerth
- The book of Philippians, written by the apostle Paul.
- And a late entry to my list, a blog post I just read this week about trusting God with others' hurts, Gratitude not Guilt

"Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies” Philippians 4:8-9. (MSG)

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Verses that reflect God's sheltering shadows in my life:

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows” James 1:17. (NIV)

“I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.” Isaiah 45:3. (NIV)

“The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned” Isaiah 9:2. (NIV)

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light” Matthew 11:28-30 (NIV)

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31. (NIV)

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me" Micah 7:7. (NIV)

"We wait in hope for the LORD; he is our help and our shield" Psalm 33:20. (NIV)

"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God..." Psalm 40:1-2, (NIV)

“I am the man who has seen affliction by the rod of his wrath.
He has driven me away and made me walk in darkness rather than light…

“He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead…

“Yet this I call to mind and therefore I have hope:
Because of the LORD’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness…

“For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love…

“You came near when I called you, and you said, ‘Do not fear.’
O Lord, you took up my case; you redeemed my life…”
- from Lamentations 3 (NIV)

Lisa Copen, part 3

It has been a delight to share this ongoing conversation with Lisa Copen, founder of Invisible Illness Week, over these past three days. If you have missed the previous two parts of our conversation, please visit Tuesday's and Wednesday's post before coming back to join us here. :)

Lisa, 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: Honestly, if I could just sit beside them and give them a long gentle hug I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need.

Secondly, I would also validate that they are right--no one really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can't drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness Twitters to connect people who Twitter about illness or health issues.

Lastly, my faith in the Lord is the foundation of how I cope with my illness, and so I couldn't walk away without at least encouraging them to give God a try. They may have had some negative experiences in the past with a church or Christians, but people are not perfect, and God really does have a plan for their life. And it's God's "Plan A." The illness hasn't bumped their life down to "Plan B." I can admit that this sounds cliche. But each day I hear from people who tell me about how their faith in God is the one thing that gets them up the morning and keeps them looking forward to the next day, rather than dreading it.

As you have been working to get out your message about National Invisible Chronic Illness Awarness, how have you seen blogs and twitter and other forms of social media make a difference, Lisa? Has social media increased how you've been able to reach more people this year to inform them 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!

We have over 1600 people who have joined our cause on Facebook. And we are giving away prizes to people involved in these different areas of outreach.

How can people get involved with Invisible Illness Week and find out more information?

LC: Thanks for asking! Just helping us spread the word, for example, reading and sharing about this blog post, is the perfect start to be a part of our grassroots cause. I don't have to tell you that we don't have a marketing budget! I hope people know that they are making a difference just by introducing other people to our virtual conference. And not just those who are ill, but spouses, parents, caregivers. Everyone knows someone who is ill. You can find everything about the week at our web site National Invisible Chronic Illness Awareness Week, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" and awareness pins.

Our theme this year is "A Little Help Gives a Lot of Hope."


We also are looking for bloggers who would like to be a guest blogger on our web site. Or you can just sign up to commit to blogging about invisible illness and Invisible Illness Week on your own blog through Bloggers Unite. We have a Facebook Cause page of course, so it's easy to share with friends and family. Share the video, the twitter "illness facts" we are sending out, things like that. Be sure to mention Invisible Illness Week to your counselor, doctor, pastor, peers, colleagues; we have brochures too.

Some people use this week as an opportunity to call their local paper and share about the week, their support group and their illness, and get featured in a story. Since it's listed in Chase's Annual Events journalists can tie it together.

Lisa, as always, it has been a delight chatting with you. I'm praying for you and for all the men and women in need of support like the kind they will find at the virtual conference next month! I'm looking forward to sharing with you voice-to-voice at noon on Sept. 15 as we talk about Coping with Crisis on top of Chronic and I'm so excited by the descriptions of all the different conference sessions and great speakers lined up this year!

Lisa Copen, part 2

Yesterday I had the joy of introducing you to my friend Lisa and her work as the founder of National Invisible Chronic Illness Awareness Week (NICIAW). If you haven't yet had a chance to read part one of our conversation, please take a moment to revisit yesterday's post before picking up with us here. :)

Lisa, what was it that made you see Invisible Illness Week as necessary? Why did you start this?

LC: Well, a few reasons. I began Rest Ministries in 1997. It's a Christian organization that serves those who live with chronic illness and the sponsor of Invisible Illness Week. I kept seeing many people who felt very alone, misunderstood, and frustrated, feeling that their illness, pain, and suffering were completely invalidated. Some people have a spouse who even doubts the existence of an illness.

I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just didn't understand illness or how to respond to it.

The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.

This sounds familiar. I've heard many people say this.

LC: It does, doesn't it? Even those of us who cope rather well with our illness on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, "So are you all better now?" People don't always comprehend the difference between being sick and being chronically ill.

So you decided to start Invisible Illness Week and address some of these issues?

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 doesn't really matter what our illness is, where we may live, our age, or how long ago we receIved a diagnosis, etc. The truth is, most of our illnesses are invisible and the fact that a healthy person is unable to see the symptoms we experience or the physical pain provides us with a lot more in common with one another in the similarities of our illness ever could. Once we get start talking about the emotions behind our illness we find out we are not nearly as different as we may have originally assumed.

What illness is it that you have, Lisa?

LC: Rheumatoid arthritis is my main chronic illness that I cope with on a daily basis. I received my diagnosis in 1993 when I was 24 years old. At a few years after that I started having symptoms of fibromyalgia and later receIved a diagnosis. Unfortunately, I have not ever experienced remission which is what all the doctors hoped for. So the last eight years has been a challenge as disease has progressed. I realize in many ways I am blessed and could be worse off than I am now and yet in the last couple of years my illness is becoming more and more visible rather than invisible.

I don't just cope with daily pain now, but I struggle to do everyday tasks such as unloading the dishwasher or driving because my hands and feet are becoming more significantly deformed. I am on all of the medications that you can imagine to try to slow the progression of the disease down but the last year has brought me into a new season and I have many surgeries that will need to be scheduled in the near future to keep any mobility I have.

Beyond the grace of God, what personally fuels your "grace tank", the driving force that enables you to keep giving of yourself even when exhausted beyond description and living in pain?

My husband is a gem and I couldn’t do any ministry without his support. And not just emotional support, but doing the dishes, the laundry, meals sometimes, taking care of our son, and more. My son is 6 and he makes me laugh. When you are trying to explain the Lord to a 6-year-old you learn a lot of lessons yourself all over again. I also go to bed early and read a lot. I will read my Bible on my Kindle and then I love to end the evening reading some good fiction. It takes me away for awhile. A lot of times I may end up back out of bed by 12:30 a.m., but I try to at least get to bed by 9 or 10 and have some quiet time.

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.

Even with your limited typing abilities, you have written several books including one that gives 505 ideas on how people can reach out to someone who is ill, right?

LC: Yes! 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.

That's a great idea. I would think that it would be a lot easier to accept help from someone if it came in the form of a gift certificate.

LC: I think so. The cards are great for a support group, a womens ministry, or really anyone who wants a light-hearted way of saying, "I'd love to help. Here is what I am able to do."

Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges you are also a wife and mom. I know it can't be easy to try to do all that you do.

LC: Honestly, it's not, but it has always kept me going too and I couldn't do it without my husband's support. Thank you for hosting me at your blog this week. I hope all of your readers will visit us at National Invisible Chronic Illness Awareness Week and let your friends know about our free 5-day virtual conference! We're going to have a great time!

Please join Lisa and I for the conclusion of this conversation tomorrow, where you will learn specific information about how to participate in the encouragement of NICIAW and the 20-session free virtual conference!

My dear friend Lisa Copen

I'm happy to once again introduce you to my dear friend Lisa Copen, a great personal encourager to me for many years. She is also the founder of National Invisible Chronic Illness Awareness Week. This year NICIAW is September 14-20, 2009. Lisa is on a blog tour to help increase awareness of the week and its 5-day free virtual conference (where I'll be on of 20 radio guest talking with her throughout that week). There are lots of ways to get involved and since Lisa has so much great information to share with us, we will be spreading out these Q&As over the next few days.

Hi, Lisa. Thanks for connecting with us here today at Hope Harvesters™.

LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.

It is wonderful to see the growth in both volume and quality of awareness and support! :) Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a description.

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.

It's 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.

Why do you feel God has given you such a passion to advocate for the chronically ill, especially those of us with invisible illnesses?

LC: Honestly, I wish I knew. I never would have “chosen” chronic illness ministry—it chose me! And no matter how tired I get or overwhelmed with the business side of the ministry, I know this will be a passion of mine until the day I die. I just see so many people hurting who just want one person to talk to who understands. They just want one pastor to say, “I’m worried about you. How can we help? REALLY?” I see so many who are left by their spouse, abandoned by their children, misunderstood by their dearest friends. It’s so disheartening. The Christian community has a huge opportunity to minister to these people and include chronic illness ministry and outreach into their church alongside divorce recovery or widow ministries, etc. I don’t understand why it’s so hard to break down the resistance except for the fact that no one wants to acknowledge that illness isn’t always healed here on earth.

Explain the idea of a "virtual conference" to us. What's that?

LC: A wonderful opportunity to "attend a conference" without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference--which is completely free--September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.

That's a great idea! So are last years programs available too?

LC: They are. We used a chat room originally so we had written transcripts, but one can hear 2008's programs can be heard from a computer, itunes, or even 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? It's kind of ironic that we began virtual conferences years ago, but now many organizations and companies are making this a trend because of the economy and costs of a real conference.

I'm looking forward to talking with you more tomorrow about exactly what is involved in a "virtual conference" and learning more about your personal story and your heart for all of us facing the daily struggle of invisible and chronic illnesses!

Coping With Crisis on Top of Chronic, part 1

This is "part 1" of a 2-part series of notes for a radio program on Coping with Crises on Top of Chronic; Chat with 2 Gals Who Understand where Lisa Copen and I chatted for National Invisible Chronic Illness Awareness Week. For "part 2" of these notes, follow the link at the end of this message.

A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week. Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.

My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next. If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!

My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn't want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row. As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!

Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all? Life doesn't just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise "extras" that come along?

I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:


1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.

There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.

On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.


2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.

Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.

Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.


3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!

Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.

OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.

Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah's Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.



I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I'm always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!


For more on this topic, join Lisa Copen and I as we talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn't stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we'll look forward to chatting with you as you call in your own crisis on top of chronic stories too.

Go to HarvestingHope.blogspot.com/2009/09/crisis-chronic-2.html for "part two" of these notes or listen to the radio program at http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand.

September Highlights

I'm very excited about the posts coming to Hope Harvesters™ over the next month! Soon I'll be sharing an article on Coping with Crisis on top of Chronic, offering ideas on dealing with the highs and lows of life while living with illness. This will be a little preview of the radio conversation I'll be having as a guest of Lisa Copen on Sept. 15 as part of the 20-speaker Virtual Conference for National Invisible Chronic Illness Awareness Week. You will also get to know a little more about Lisa and NICIAW here when I interview Lisa next Tuesday and can get a feel for what this conference will be all about by reading this short poem, You Don't Look Sick.
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Edited to add Sept. 15 radio interview link :)



In addition to our focus on surviving and thriving through illness, I am thrilled to be able to be a part of a special new movement called (In)Courage. (In)Courage is described as being "a bit like a beach house where you can put your sandy, dirty feet on the coffee table, help yourself to whatever's in the fridge, laugh late into the night with friends, and hear God's voice more clearly than perhaps anywhere else." It's a group of women coming together to share our messy, broken, imperfect lives as we strive together to offer all we are to the glory of God.

(In)Courage launched earlier this month and had about 20,000 visitors in their very first week of posts on the topic of "courage". Next month's theme of "hope" is near and dear to my heart and I look forward not only to sharing my own reflections about Hope in the Shadows on Sept. 19, but am eager to soak in all the wisdom from other real and godly women who will be guest blogging on the topic all month long.

Given a Thorn

If the following post is just a little too "up" and hard for you to digest right now, check out Just In Case You Wonder... to see that I'm for real and understand about those down days too! {{{hugs}}}


I love gardening, but I usually find myself starting to loose the battle against weeds by early May, and by July my garden is overrun simply because I don't have the energy or stamina to get out there and fight them, especially as temperatures climb and I wilt, just like my unwatered flowers, in the heat. I don't know that this year will be any different, but I can dream of a beautiful rose garden, can't I?

So with high hopes of a different outcome this year, I set out to do my gardening thing this morning while those weeds are still young and tender and the air is cool. Things went along well for the first few minutes, until suddenly I felt this irritating sensation in my hand every time I moved it or tried to grasp something.

The pain wasn't debilitating, just "there" enough to keep me from being able to pull weeds properly or make much headway in my battle. At first I tried to ignore it and keep pushing through, but the more I tried to go on with my work in spite of the pain, the more "stabbing" the sensation grew. What was wrong? Nothing obvious, so I tried different ways of grasping those weeds without using my thumb and discovered that an opposable digit really is necessary for weeding!

On very close inspection I discovered the tiniest of thorns, just barely visible, poking out of the pad of my thumb. It looked so small that it seemed I should be able to simply brush or even blow it away without consequence. But the more I tried to get rid of it, the deeper I drove it into my own flesh and the more irritated my hand became.

I went for the tweezers but just couldn't get a good grasp on it. By very nature of it's minuet size, that thorn became more problematic to remove than a big splinter would have been. That speck on my thumb ultimately put a halt to my gardening for the rest of the day.

After favoring this hand all day long I've finally realized that I will probably have to wait for it to fester before I can work that irritating little thorn out of there. How could something so seemingly insignificant cause me to have to change my plans not only in gardening but in several other normal, daily tasks today too? The whole experience has left me reflecting on what it is like to live with the progression of little, daily, ongoing losses in chronic illness.

Yes, of course a thorn so tiny that it can't be grasp with tweezers may seem trite in relation to significant health issues! But might not some of the same general principles apply?

Before I first got sick, I set out with a goal, my college degree ahead of me. That first week when everyone else on campus was sick too, I didn't give my illness much more thought than I did that first irritating little thorn poke this morning. But as my fellow-students began returning to class and my fevers and nausea and memory lapses and debilitating fatigue dragged on for weeks on end, I began to see this was not something I could just keep pushing through and went home to sleep through three weeks of Christmas vacation.

Unlike my gardening today, I actually tried to return to the task at hand as I attempted a second semester at school. Within 36 hours back in the dorm I was as sick as I had ever been prior to those weeks of mom's home-cooked meals and pampering. This began my "grasping at straws" (or should I say, "grasping at thorns"?) stage of the journey, months of desperately seeking medical answers and trying every "sure cure" that was offered to me. Just like trying to remove the thorn caused greater irritation to my thumb, many of the things I tried in hopes of regaining my health actually exacerbated the situation and caused further decline.

A diagnosis finally came in the midst of that grasping stage. Just as finding that tiny thorn in my thumb answered some questions about why I was experiencing the pain I felt, I was relieved to have a name for my illness as well. But that relief was short-lived as I moved from grasping to festering with boiling anger as the realities of such a diagnosis sank in. I was not only fighting my illness but the heart-infection of bitterness as I raged against a broken body, broken dreams, and the loss of my any illusions I had of being in control.

I had to fester for a long time before I could reach the acceptance stage. Here I realized I was going to need to alter my life significantly around my "thorn" and learn to live with it for as long as it took to work it’s way out (in this case, maybe the rest of my lifetime). I had to develop a new definition of "normal" daily life, accepting that this form of "normal" could vary dramatically from day to day or sometimes even from moment to moment. Just as in gardening the simple task of grasping a weed was unexpected hindered by pain shooting through my thumb, my new normal with chronic illness sometimes includes feeling "fine" as I step out the door to get the mail, only to find myself unprepared for the exhausting effort of trying to walk back up the driveway.

When my husband came home from work tonight he immediately noticed three long scratches across the back of my hand, the result of carelessly brushing up against a rose bush this morning. But he didn't notice that little thorn in my thumb until I took the time and seemingly silly effort to point it out to him. Strangely enough, though they look ugly, those scratches don't hurt much, hardly even bother me at all. It's that unseen thorn that causes me to alter the very way I usually do things. Just as in illness, often the obvious struggles are easier to cope with than the unseen conditions that cause others to wonder why I claim to be sick or can be unreliable to fulfilling my commitments when I look so healthy.

In the book of 2 Corinthians, chapter 12, the apostle Paul writes:

7To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. 8Three times I pleaded with the Lord to take it away from me. 9But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

- NIV

I don’t know all the reasons why God has allowed my “thorn in the flesh”. Is it to keep me from becoming conceited? Possibly so, for I know illness has certainly humbled me and helped me to realize that God is God and I am not!
Is it a “messenger of Satan” intended to torment me? Only God knows for sure why He allows any kinds of trials in my life, but I am comforted by the book of Job to see that if satan has been allowed to bring any pain into my life, that his influence must be filtered and tempered through Heaven first. He can only touch me as far as God allows and his powers are limited by God's strict parameters. Like Job, I can only see a terribly small sliver of what is actually happening in our world as influenced by the spiritual realms, but I do know that God is the one ultimately in control!

So as for the source of my "thorn" I can say with confidence that I know that God has the power to prevent these trials, but in His great wisdom He has chosen to allow them in my life (be it directly through satan or simply as a natural by-product of this broken, fallen world) for some perfect reason. Because I cannot see the big picture from His perspective, instead I must cling to His promise that His grace is enough and accept that His power can shine most fully through me when I yield my heart to His plans. Therefore, I will boast gladly in my weakness and thank Him for the power that He gives me for every step He enables me to take, every breath He blesses me to draw.

James chapter 1 says,

2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything.

I don’t know that I can honestly say I “delight” in my weaknesses quite yet, though I am beginning to see that if it was "given" to me, then I can choose to accept it as a "gift" and look for joy even in the midst of struggle and pain. A bit later in that James passage we read,

17Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

Even though my physical condition is ever changing, I can cling to my unchanging God! I pray that He will refine and mature me through this process so that others will see Christ’s strength in and through me even if they fail to understand about my thorns.


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The theme of the May Christians with Chronic Illness Blog Carnival is "Coping with Loss". What is something you miss since you have had your chronic illness/pain? How have you been able to adjust and accept the fact you can no longer do “it”? What new hobbies or activities have you found you enjoy that somewhat replace what you lost? What has your family missed concerning your illness and how have you found a way to change the way you do things so you can still participate in family activities? Read additional articles from theis Carnival at http://chronicillnesssupport.wordpress.com/2009/05/15/christians-with-chronic-illness-blog-carnival-2

Submit your ideas for the June carnival at ChristiansWithIllnessBlogCarnival.com by June 5 to have your post considered for next month's carnival selections. Next month's topic is anything related to children while living with chronic illness, such as keeping them busy over the summer, the grief of not being able to have kids (or maybe choosing not to due to illness), the stress of keeping up with kids, etc.

Virtual Spa Weekend

The first weekend in May, Hannah's Prayer Ministires (Christian infertility and pregnancy loss support ministry I helped launch nearly 15 years ago) will be holding a retreat in OH. There will be about 40 ladies gathered to encourage and support one another. The theme of the weekend will be "Beautiful In His Sight" and the guest speaker is Ginger Garrett, author of Beauty Secrets of the Bible (as well as a devotional book on infertility and several award-winning Christian fiction titles). I know it will be a wonderful, blessed weekend for all who attend!

Unfortunately, there are hundreds of women who are regular participants on the Hannah's Prayer Community Forums who are unable to attend for a variety of reasons (mostly, the prohibitive cost of travel) but would really love to be there. As the excitement builds on our Forums for the ladies who will be attending, the disappointment for those who cannot is growing as well. And so I'm going to be hosting a Virtual Spa Weekend on my InnerBeautyGirlz blog from May 1-3.

This event will be open to everyone, but especially geared toward the ladies of Hannah's Prayer. I am looking for home-spa ideas, beauty treats and suggestions, guest blogger articles on beauty (with fun tips for our bodies, but also a focus on inner beauty), and product donations for drawings and give-aways throughout the weekend. Since my target readers that weekend will all be dealing with infertility or the death of a baby, I need to specifically avoid child-related posts and products (like using examples from motherhood in your stories).

Please share your suggestions for this event! Have a beauty topic you would like to write a guest blog about? Have a product you would like to donate as a give-away (and get your business featured in the process)? Have any creative ideas and suggestions for creating an at-home-spa experience? I would love to hear from you!

Cardboard Cricket Surprise!

There are good surprises in life and there are surprises of the not so great kind. Last month I experienced both kinds within 36-hours.

The first surprise might best be described as a “blindside.” I ran across a friend I hadn’t seen in a few weeks and apologized for missing a recent party in her honor. When I made mention of the fact that I had really wanted to be there but was flat in bed at that point, unable to even care for my own children for nearly 2 weeks, she launched into a lecture about how my illness was not of God, that it wasn’t His will for my life and that we needed to stand in faith that I will be fully healed of all remnants of health struggles.

Those words alone weren’t so blindsiding. I’ve had similar conversations with others before, and can truly appreciate the sincerity with which they are spoken and the compassion or conviction from which they stem. What made this conversation different was that it really wasn’t a “conversation” at all, but rather a five-minute monolog, giving me very little chance to respond or interject any other opinions or alternative points of view. While I have had multiple opportunities to hash through my beliefs on faith and healing over the past two decades, I was given no voice and was left feeling judged and rejected (though I do not believe that was her intent). By the time I found reason to politely excuse myself, I had resorted to simply nodding my head in dumfounded disillusionment, knowing that every time I opened my mouth I would be cut off or undermined anyway.

While I’ve lived at peace with God’s plan for my life for many years, this encounter shook me! I couldn’t get to sleep that night without talking it through with my husband and once again offering it all up the Lord in prayer. I had to start back at square one with questions like, “If I’ve asked God to heal me and He hasn’t, is my faith lacking? Is this proof that I’m ‘double minded’ because maybe I haven’t ‘prayed believing’ enough?”

I wrestled with the Lord for the next day and night as well. “Father, show me if I should be taking more aggressive steps in trusting You or claiming and applying specific passages on healing to my life. I believe you can heal me, but I also believe You have shown me this isn’t Your plan right now. If this isn’t Your plan, I have to believe that this illness is ‘of You,’ or at the very least ‘allowed by You’ as part of Your best plan for my life. But if I’ve got it wrong and You want a change in my attitude, please show me how faith fits into this whole picture? I don’t want to reject any good and perfect gift You have for me, be it illness or healing, but I’m so confused and hurt right now.”

My second surprise came as I was snuggling my sweet 6-year-old early the next morning. The book we were reading is supposed to have sound effects of a cricket chirping merrily on the final page, but it has never worked in the 3+ years we have had it, though we bought it new, have changed the batteries and done everything in our power to make the book work as it was designed. I’m not sure why we never returned it to the store, but we have become content to read the printed words and not expect any sound effects or to have fun making up our own effects as we go.

Even as I read stories to her, the battle ranged on in my heart and the back of my mind. And then God spoke, in His still, small, calming voice, through the words of my daughter and her simple act of pure, childlike faith. “Mommy, I want to pray that God will make my book work.” While I remained calm in my reply to her, my heart thudded within me. “Lord, I’m struggling with understanding Your heart in miracles right now. Please give me wisdom in answering my tender little girl and please make Yourself real to her even in this simple request.”

“Well honey, we can certainly ask Jesus to fix your book. And we know He is God and He can do it if He chooses, right? We know He performs miracles when He has a purpose in them, like when He brought the plagues on Egypt to bring the Israelites out of slavery. But we also have to remember that God is allowed to say no and we can’t get mad at Him if He doesn’t answer our prayers the way we want Him to. Sometimes God saves His miracles for really special, big things so that we know that it was only Him that could do them.”

“That’s fine Mommy. I understand. But I still want to pray!” And so we bowed our heads and she presented a heartfelt prayer about knowing God’s in control and asking God to help Mommy find just the right kind of batteries at WalMart so her cricket could chirp. She never even asked God to actually fix the book but simply thanked Him for it and closed with a peaceful “Amen.” Then she opened her book and it immediately started chirping, loudly!

“See Mommy, God fixed it!” Oh to have the faith of a child! Yes, God did save His miracle for a “special, big thing” – maybe to my daughter only a small stepping-stone to look back on as He builds the foundation of her faith. But to my hurting heart, a mighty and significant and healing balm! Yes, He still hears prayer. Yes, He’s still in the business of healing broken things (even cardboard cricket books). And yes, simple, childlike faith is all that’s required to receive His good gifts.

I was overcome with a wave of peace unlike anything I had known in the prior 36 hours of struggle. In that moment He met me with such deep assurance that no, my faith is not lacking because I have not been healed. He knows the number of hairs on my head. He sees when every sparrow falls. And he even cares about cardboard crickets and childlike hearts. So I can accept that, at least for this season, His answer to my prayer for healing has simply been “no” and that doesn’t mean that I haven’t been answered.

In the end I’m back at Jesus’ question to the sick man by the Sheep Gate pool in John 5, “Do you want to get well?” I cry out, “Yes Lord, you know I want to be well!” Yet this truth, that I do want health and would readily and joyfully accept such a gift from the Lord in an instant should He choose to heal me, is tempered by the understanding that of all those people waiting by the pool, for some purpose known only to Him, Jesus chose to heal only one that day.

So rather than demanding a miracle (and throwing a fit that He’s not doing things my way) from the one who has already given more than I deserve by ransoming my life with the blood of His Son, I must humbly add, “Lord, not my will, but Yours be done.” I do not have to question why I wasn’t the “one” He planned for healing, but rather trust that God has some purpose in my pain, some reason to allow illness to remain in my body until the day He gives me a glorified one in Heaven. If He receives any measure of glory through my broken vessel, then praise the Lord! While I am ready for healing, I am also willing to continue trusting Him and depending on Him day-by-day if physical healing is not His perfect plan for my life.

Surprises come in all shapes and sizes, sometimes blindsiding, sometimes shockingly joyfully. I’m thankful for both kinds He brought into my life last month because they each challenged me to assure that I was not living in complacency. I had become “comfortable” with my illness again, and while I do feel God has a purpose in my pain, it’s good to be shaken up and look at faith from a fresh perspective from time to time. Though the deep probing of my heart was painful, I am thankful for the chance to be reaffirmed in my position of trust in God’s plan. And a cricket’s chirping, be it real or electronic, will forever more be a beautiful reminder to me of God’s surprises!