Saturday, December 26, 2009

Choosing Joy

17 years ago last month, my husband and I, just three months into a new marriage, set out on the intentional path of striving to expand our family. Our oldest living son turned ten this week, so obviously that dream was slow to be realized!

Through those first seven years we had just two positive pregnancy tests. One resulted in our oldest's birth. The other led to the miscarriage of our sweet Noel Alexis. It was 15 years ago tomorrow morning that the bleeding and pain began. Tears for a few hours, followed by five months of numbness.

In hindsight I now see that my total lack of ability to process any form of emotion after Noel's death was more than just "denial" or "normal grief," but rather grief compounded by post-partum depression. (A journey I would again face on a much grander scale after the birth of our second living child, our daughter who will be seven next month.) It took me nearly half a year to allow myself to say the words, "I was pregnant," or "I had a miscarriage."

When I finally did choke the words out, the flood of sobbing, body-wracking tears last for hours! The emotions that had been pent up for months, not allowing a smile, a laugh, a tear, stayed close to the surface for the next few years, never giving me a moment's notice of when they might spring forth. I had irriational thoughts, like wanting to walk up to total strangers and simply announce, "My baby died." Infertiltiy is brutal. Miscarriage is torture. To miscarry our only known child in the midst of a many-year battle through infertility threatened to drive me to insanity with the intensity of my grief.

While on the one hand Noel's death intensified the infertility experience to a more painful level than I could ever have imagined, on the other hand she brought a strange measure of healing as well. I found joy in knowing that after more than two years striving for motherhood, that I was now, and forever more would be, somebody's Mom! Once I could admit to myself that Noel's brief life had not been a dream, simply a "late period" as I tried desperately to convice myself, I found some measure of hope and comfort in the fact that she had actually touched my womb, even if all-too-briefly.

Naming Noel was a very helpful step for me. Rick and I, not knowing if I had carried our son or daughter, but both "feeling" she was a girl, prayed long and hard over the right choice of a name. We chose "unisex" manes with meanings that touched our hearts, spelling Noel with the male spelling but pronouncing it with the femine pronouncation. We figured if "she" actually was a son, then he would forgive us in Heaven, but giving "her" an identity that I could relate to was so very important to me. Her name means "Christmas Minister of Needs" for she came and went over the Christmas season and ministered deeply to the hearting heart of this infertile want-to-be mother. I read of how "Mary treasured all these things in her heart" and my heart treasured the knowledge of the daughter I would some day see face to face in Heaven.

I hated when well-intended friends would try to comfort me with, "Well, at least now you know you can get pregnant." From anyone else, those words seemed to invalidate my child's precious, unique life and the profound loss to have her missing from ours. But when not minimized by other's "at least" statements, to be honest with myself it also was a relief to realize that we were truly "only infertile" and not utterly sterile, that there was hope of future conception.

But it also terrified me that if it had taken two years to conceive in the first place, even with medical aid, that it might be a very long road to a second child. And now that I had a "history of miscarriage" my innocence was shattered. Getting pregnant was just the first step, but the expectation of a living, bring-home-baby at the end could no longer be taken for granted in my heart and mind.

If you have stuck with me through all this rambling, you are probably wondering what does any of this have to do with "choosing joy"? With the dawn of 2009 God impressed upon my heart that my "theme word" for this year was to be Joy. He's confirmed it over and over, and while my husband may wonder where that joy has been (because he's seen me in some pretty black places with my health this year - 10 weeks in a foot cast, followed almost immediately by 5 months of IVs - physically exhaused, grumpy and especially wrestling to process all the emotional anguish of news about this retrovirus), I have to say that God's joy has been more tangilbe to me this year than in any I can remember since we started the infertility journey 17 years ago. I may not always be "happy" but God's joy, bouied by hope, and sustained by peace that passes understanding, has been tangible in ways I cannot put into words.

Here, in this week where we mark the birth of Christ, the death of our first daughter, the birth of our first living son and the due date of the child who would have been turning 8 but is also awaiting us in Heaven with two siblings, God gave me a beautiful reminder of all He has taught me this year. The Christmas stocking I've had since childhood had too many holes for my husband to use to put some goodies in on Christmas Eve. So we pulled out a couple of "extra" stockings we had picked up one year when we were out of town for Christmas and had forgotten our regular stockings at home. One bears the script "Noel" while the other says "Joy." In past years, without hesitation, I would have instantly grabbed "Noel," thinking much more of the daughter who was not there to share in our celebration than of the Christ-child who's birth I should have been focusing on. This year, with only the slightest moment's indecision, I eagerly reached for "Joy" instead.

Monday, December 21, 2009


I'm reflecting on "birth" right now - the birth of the Son of God (that came at the cost of a Father's greatest grief), the birth of our first living miracle (10 years ago this morning I was just starting labor), and the births we never got to enjoy, our little ones awaiting us in Heaven.

Joel Samuel, who shared a due date (2 years later) with his big brother and would now be turning 8, has been especially on my heart these past couple of days. His name means "The Lord will repay the years the locusts have eaten," and we named our son in faith that after so much heartache (deep financial struggles, multiple failed adoptions, miscarries...) God surely had something more in store for us than years of tears and loss that had marked our first decade of marriage.

We had no idea what form that "something more" would be, perhaps emotional, spiritual or even physical tangible blessings, but we clung to the hope that His "more" would be perfect in His right timing and that He would not leave us adrift in the despairing grief that threatened to sink us. My heart is full with all I want to write on the kindness and grace God has washed over us in the eight years since Joel left my womb for Heaven, including two more living miracle babies! Yes, there have been hard times too, like my recent diagnosis of a retrovius (XMRV is one of only 3 known human retroviruses, the most well-known being HIV), but God has been so gracious through it all.

It seemed for so long we were the ones grieving, in need of tangible financial or other help. This Christmas, when so many are struggling, we live in a warm home with bountiful food, God's blessings overflowing. My eyes tear as we hand warms socks and an energy bar to the man with the cardboard sign on the corner, as my husband quietly walks forward to pay for lunch for the man who digs through his pocket and turns to walk out of the fast food joint because he doesn't have the change to cover a value meal, as we place a few small gifts of love in a friend's arms to put under the empty tree in her tiny apartment. We do it for Jesus. We do it for Joel.

Yesterday we enjoyed the blessing of a long, leasurly lunch with Rick's parents to celebrate Big. J's addition to our family 10 years ago - such a wonderful change of pace after 19 weeks of spending my Sunday afternoons hooked up to IVs! (On top of that, my hives are even starting to clear up. What a blessing!) We'll celebrate him again tomorrow (his actual birthday) with my side of the family.

My brother, sister(in-law) and nephews got in from Washington yesterday evening and spent the night with my parents. We will be seeing them in a couple of hours and spending the next 10 days together, so you might not hear from me much until the end of the year. As a "Christmas gift" I wanted to point you to a current blog give-away for Joy Dekok's wonderful book, Rain Dance. It takes on some heavy topics (infertility, post-abortion syndrome, grief - topics that scared me away from the book for far too long) but is an amazing read and will touch your heart. Enter to win your own copy at

[Edited Dec. 26 to say, after dedicating this entire post to Joel, I realized belatedly that it was actually Hannah Rose who shared a due date with our oldest J. She is the one that would have been turning 8 about now. Joel was due in September, as we had two back-to-back miscarriages.
There, Mommy-guilt for having mistaken dates surrounding the lives and deaths of my children, now somewhat relieved by this admission. As this is a mistake I still can't believe I would ever make "in my right mind," and especially one I'm still shocked that it took me nearly a week to even realize I had made, I'm chalking this one up to CFS / XMRV "brain fog". :( ]

Wednesday, December 9, 2009

Different Christmas Hope

My friend, Holley Gerth, has done it again, posted another amazingly thought-provoking article that I just have to share with you. This one will be especially meaningful to anyone who is coping with the loss of a loved one this Christmas, including women facing miscarriage (any form of pregnancy or infant death really - check out Part Two) or infertility (be sure to follow her my storm link too, if you are walking infertility). Even if you don't fall into those catagories, you will still find it a worthwhile read!

A Different Kind of Hope

I also posted some reflections on Joy on my InnerBeautyGirl blog yesterday (including brief mention of living children along with part of our infertility story) and shared additional thoughts on Christmas and grief on my Hannah's Hope Book blog last year.

Need more encouragement? Don't forget to leave me a comment on the Lemon Fresh post below. I'm truly finding Squeezing Good Out of Bad to be offer a refreshing perspective on times of trial and would love to see you win a copy for yourself! But there's no chance to win if you don't leave a comment on that thread.

Friday, December 4, 2009

A Lemon Fresh Blog Tour

Sour circumstances left you feeling down? Unemployment, foreclosures, divorce, bankruptcy and cancer don't even begin to peel the skin off all the bad news in our world today. At a time in history when the evening news contains more bad than good, people wonder if sweeter days will ever come. In steps James (Jim) Watkins. With a fresh perspective on life, love and the pursuit of happiness, Watkins serves readers a refreshing cup of encouragement and hope.

Written from his own experiences with cancer, unemployment and other life-puckering crises, Jim prompts readers to look at the cup of suffering with eyes focused on the true thirst quencher - Jesus Christ. Readers will be pleasantly surprised at the balance of readability and deep wisdom offered within the pages of Squeezing Good Out of Bad. With scripture references, humor-filled lists, and a creative manuscript, Watkins brings the bitterness of hard times and blends it with the sweetness of God's presence. He's been there. His transparency is as refreshing as, you guessed it, a tall, cool glass of lemonade.

Leave a comment here and ask your friends to do the same. One comment from the blog with the most comments in this tour will win:

First prize: Jim will stop by your house with fresh-baked lemon cake and hot lemon tea. (Disclaimer: Offer available only to residents of Corn Borer, Indiana.
Alternate prize includes a copy of Squeezing Good Out of Bad, mixes for lemon tea, lemon cake, lemonade and assorted lemon candies. Not available where taxed or licensed. Winner responsible for safe and proper use of products.)

If Jim's disclaimer isn't enough humor for you, read on:

When life gives you lemons . . .
10. Don't confuse them with hand grenades (Identify the problem)
9. Check the delivery slip (Determine if it's your problem)
8. Sell them on eBay (Profit from the problem)
7. Paint smiley faces on them (Laugh at the problem)
6. Join a citrus support group (Share your problem)
5. Use as an all-natural, organic astringent (Grow from the problem)
4. Don't shoot the delivery driver (Forgive the problem-maker)
3. Graft to a lime tree for a refreshing, low-calorie soft drink (Take the problem
to a higher level)
2. Grow your own orchard (Live a fruitful life despiteor because ofthe problem)
1. Give off a refreshing fragrance (Live a lemon-fresh life)

Interview with Humorist and Author
James (Jim) Watkins

about his new book, Squeezing Good Out of Bad

Jim, you've been in the literary world for a while, give us a quick recap of how you got started to where you are today.
By second grade, I knew I wanted to be a writer. I felt the suspension of disbelief was stretched too thin when the real-live puppet Pinocchio became a real live boy. So I rewrote the ending having the wooden puppet die a painful, prolonged death of Dutch elm disease. (At that point, I'm sure my parents and teachers weren't sure if I'd become a writer or a life-long patient at a psychiatric hospital.) I later went on to become the editor of my high school paper, worked at a Christian publishing house as an editor during college, and then dabbled in writing while holding down a real job. Since 1988 I've been writing and speaking full-time.

In Squeezing Good Out of Bad you give many insightful tips on how to turn around sour circumstances. Share a practical way we can be encouraged during tough times.
My "top ten list" of chapter titles 10-4 provide practical steps for dealing with lemons, but the real secrets are found in chapters 3-1. (Yes, like a true top ten list, the chapters are numbered backward.) Romans 8:28 promises that that God is working all things out for our good to accomplish His purpose in our lives. But we have to read on to verse 29 to find that purpose: "to be conformed to the image of His Son."

No life is perfect. Can you give us an example of how you got through a challenging situation and were able to use these principles to see the good in it?
I think it's so important that we take our faith seriously, but I certainly don't want to take my situation or myself too seriously. So I create a mental "top ten" list of what good can come about in this situation. For instance, last year I had radiation for cancer and it totally depleted me physically and mentally. My family dubbed it "radiation retardation." Because of that, I was fired from a wonderful part-time job because I just couldn't do it. So, "Top Ten Great Things about Losing My Job":
10. I'll be paying less taxes next year.
9. I've got twenty hours a week of free time.
8. . . .
Our family is going through something right now that is far worse than cancer, and I can't see a single good thing that can come out of it. So, at those times, you just keep hanging on--with white knuckles--to the fact that God loves you and the Romans 8:28 is still in effect.

What do you enjoy doing in your spare time?
Spare time? What's that? I'm a firm believer in "redeeming the time" so I try to keep busy doing things that matter for the Kingdom. But after my little brain is worn out--usually around 7 pm--nothing beats a session of "Freecell."

What's the last book you read and why?
Strength to Love by Martin Luther King, Jr. Unfortunately, the only real reading for pleasure is on airline flights. The King book is research for a book I'm proposing as we approach the 50th anniversary of the Civil Rights Act.

What do you hope readers will gain by reading your book?
I wrote the first draft nine years ago, and even though I have a great agent, we just couldn't find a publisher. That was before cancer, family crisis, unemployment.
. . . So it's a much more comforting, honest book. And it forced me to not be so flippant and casual about the serious issues people are dealing with. Henri Nouwen talks about "wounded healers." I think, because of the lemons that have piled up in my life, I can more compassionately offer comfort to those buried under a pile of lemons.

Publisher: XarisCom
ISBN: 978-0-578-01006-9
Retail: $12.96
A book that will make you laugh, think, and start looking at those sour places of lfe in a whole new way.

James N. Watkins is the author of sixteen books and over two thousand articles. He is the acquisition editor for Wesleyan Publishing House, an editorial advisor for ACW Press, instructor at Taylor University and a sought-after conference speaker. He's won Campus Lifes Book of the Year award and various other awards for writing and editing. Together with wife Lois, they have two children and four grandchildren. His family is the lemonade in his life.

Disclosure: I will recieve a complimentary copy of Squeezing Good Out of Bad via Kathy Carlton Willis Communications, gifted to all participants in this blog tour.

Thursday, December 3, 2009

More Clean Water for Africa

* 1 in 7 people don’t even have access to a clean water source.

* More people in developing countries die of a water related disease than of malaria and HIV/AIDS combined. It is a problem as urgent as it is compelling.

As shared in my Thanksgiving post, there is much need for clean water in other parts of the world. If you are planning to purchase a Christmas tree this year, why not help fund clean water in Africa at the same time? Find out more about The TreeWell Project at (If you don't live near Reno, NV but like this idea, think about contacting the director of this project to help plan something like this from your own town for next year!)

* Statistics quoted from The TreeWell Project website.

Thursday, November 26, 2009

In Everything Give Thanks

Sometimes when we are struggling with burdens and circumstances of life, it is hard to find anything to be thankful for. Today I'm thankful for the simple things, like easy access to fresh, clean water. Here's a story that I was recently given persmission to share, along with one reason I'm feeling thankful and reflective today.
And if you are looking for something to do with the abundance of leftover turkey from today's bounty, maybe substitute it for the chicken in this tasty recipe from noted author, Kay Marshall Strom. Her recent release, The Call of Zulina, is a novel with accurate historical details regarding slavery in Africa. Below is a recipe and first-hand recollection of Kay's own real-life interactions at the well in Africa.


This warm, mellow soup from Senegal, West Africa, can easily incorporate any extra turkey you have on hand. Just substitute it for the chicken.
You will need:
1 tablespoon butter
1 teaspoon curry powder
2 teaspoons flour
2 cups chicken broth
cup diced chicken (or turkey)
1 cup yogurt
juice of 1/2 fresh lemon
fresh chives, washed and snipped

Melt the butter in a saucepan over medium heat. Add the curry powder and flour and cook 2 minutes, stirring constantly. Gradually blend in the chicken broth and bring to a boil, continuing to stir constantly. Add diced chicken (or turkey).
Remove the kettle from the heat and cool the soup slightly. Gradually stir in the yogurt, a small amount at a time. Squeeze the juice from the lemon half and add the juice to the soup.
Garnish each bowl of soup with a dash of fresh chives.

The Women at the Well
by Kay Marshall Strom
In Senegal, West Africa, I sat beside the community well, because thats where the village women gathered. Out of the dusty wasteland they came, from every direction, their babies tied to their backs and their water containers balanced on their heads. They were glad to rest beside the well, for they had to walk many miles to get there. The average woman in the world, we are told, walks seven miles a day in her quest for water. When you factor in those of us who only walk to the kitchen to turn on the faucet, you can see that some must trek much farther than seven miles!
At the well, the women have a chance to catch up with the goings-on in neighboring villages, to air their complaints with one another, and to share their own news. And so I sat by the well with Obei and Helene, two Christian women in a country 98 percent Muslim, and waited to meet the women as they came for water.
And come they did.
A young woman came, sobbing over her baby son who was burning with fever. We prayed together in Jesus name that her baby would be healed.
A girl came and whispered her wish to learn to read, but said she could not because she walk to the well and back took her all day. Obei offered to teach her a little every day when she came for water. She started with: For God so loved the world.
A woman came with terror in her eyes and confided that her daughter must surely be a witch. Helene prayed for the girl, but also for the mother. Do not believe what others tell you, she warned the distraught mother. Believe in the power of God.
And Songa came. Obei and Helene had prayed with her before in Jesus name, and Songa had seen a miracle as her seriously ill son was healed. Now she too, was a follower of Christ. My husband ordered me to renounce Jesus, Songa told us. When I would not, he threw me out of the house, but he kept my children. Please, please pray for my little ones. Pray that they too will know the God of mercy and love.
This holiday season, I am thankful for the women at the well in Senegalall three of them, for Songa has joined the other two. Im thankful for the lives they are touching in the name of Jesus. Most of all, I am thankful for the Living Water that flows freely for every one of us.

Author Kay Marshall Strom has two great loves: writing and helping others achieve their own writing potential. Kay has written thirty-six published books, numerous magazine articles, and two screenplays. While mostly a nonfiction writer, the first book of her historical novel trilogy Grace in Africa has met with acclaim.
Kay speaks at seminars, retreats, writers conferences, and special events throughout the country and around the world. She is in wide demand as an instructor and keynote speaker at major writing conferences. She also enjoys speaking aboard cruise ships in exchange for exotic cruise destinations. Learn more about Kay at her website or contact:

Kathy Carlton Willis Communications
1324 S. 10th Street Raymondville, TX 78580 | | 956-642-6319 |

Ever read stories like this and feel helpless. "What can I do about the lack of fresh water a world away?" Unrelated to the above book, I recently came across the Mocha Club. The idea is simple. You give up two "mochas" ($7) a month, and instead use that money to help someone a world away have access to fresh water and other life-saving aid! Find out more at

Another great idea is The TreeWell Project, using the proceeds from Christmas tree sales to fund African wells. :)

Monday, November 23, 2009

The Choice

I've mentioned my sweet friend Holley Gerth more than once here. Today she posted a story I've heard from her several times in the past, but it never fails to move me and challenge me in my choices and perceptions. Please enjoy with me Bitter or Better from the (in)Courage website. :)

Wednesday, November 11, 2009

Breast Cancer Support Resources

I must be honest and say upfront that I don't have personal experience with, nor even personal recommendations for, any of these resources. But having known several friends who have survived, and having the reality brought home even more personally as I've talked with chemo patients while visiting the hospital for weekly infusions, I have been searching for resources offering support through the battle of cancer. Many of the links here are specific to breast cancer (though some are general cancer support resources) as that is the journey many of my friends have faced. Simply by being born female, my "odds" are 1 in 8 of facing breast cancer at some point in my life as well.

If you know of other resources, especially ones from a Christian faith-based perspecitve, please share with me and my readers!!! I am also looking for resources available for other cancers, in general or specific kinds, as well.

Outreach of Hope Dave Dravecky's ministry "to serve suffering people, especially those with cancer and amputation, by offering resources for encouragement, comfort and hope through a personal relationship with Jesus Christ."

The Lydia Project "Spreading faith, hope and love to women facing cancer." This is a must-visit resource! I have a soft spot in my heart for women's ministries named after strong Biblical women, so this website caught my attention from the get-go. But when I realized what their ministry did, it brought me to tears. What beauty from ashes! I won't try to describe it, just go see for yourself.

An Uninvited Guest: One Woman's Journey from Cancer to Hope (book by Jeana Floyd)

Finding the Light in Cancer's Shadow: Hope, Humor, and Healing after Treatment (book by Lynn Eib)

Cancer: Longterm Survivorship Issues message board forum through the Rest Ministries Sunroom, offering supportive understanding and dedicated to issues of long-term cancer survival

Stepping into the Ring: Fighting for Hope Over Despair in the Battle Against Breast Cancer (book by Nicole Johnson)

Nicole Johnson has also written three short "pieces" on breast cancer that are well worth the time to read:
Stepping Into the Ring: Round 1
Stepping Into the Ring: Round 2
Stepping Into the Ring: Round 3

Laura Jensen Walker Christian breast cancer survivor and author of multiple books including Thanks for the Mammogram!: Fighting Cancer With Faith, Hope, and a Healthy Dose of Laughter

Lump to Laughter, "a ministry-driven, non-profit organization committed to conquering breast cancer and supporting those affected by it."

Cancer Resource List from Focus on the Family

Hope Navigators - Cancer Support Blog This resource is helpful for "burden bearers" longing to come alongside a friend with cancer, while the parent website offers resources for cancer fighters themselves.

Cancer Patient Advocate "is dedicated to helping people provide emotional and spiritual encouragement to patients and their caregivers, especially those facing cancer."

Breast Friends, "a non-profit organization dedicated to improving the quality of life for breast cancer patients." Please note that this resource does not seem to be faith-based and may or may not be "faith-friendly". I am adding it to my resource list because it does seem to offer extensive support information both to patients and their supporters.

Have a story or resource you want to share? Please let me know!

Wednesday, October 21, 2009

Helping a Friend with Cancer

Nicole Johnson has put together a creative list of 15 Ways to Really Help a Friend With Cancer that's right on target. With October being Breast Cancer Awareness Month, her focus in on breast cancer, but the ideas suggested can really be applied to any kind of cancer and many other chronic illnesses as well. I've been blessed by some of these tips, such as a friend picking up my dirty laundry and returning it clean and folded, or another friend swinging by with a bag of grocery basics and the wonderful gift of paper plates!

Friday, October 16, 2009

Pregnancy & Infant Death

Sorry I'm a day late in actually getting this posted :( but all those impacted by the death of a baby at any time from conception through early infancy are continually in my prayers. I hope this link recognizing Pregnancy and Infant Loss Awareness Day helps you feel just a bit more "validated" in your loss and comforted as you grieve.

"According to a 2004 National Vital Statistics Report issued by the Centers for Disease Control and Prevention (CDC), in 2000, 15.6% or 1,003,000 of the 6,401,000 pregnancies in the United States ended in either a miscarriage or stillbirth; the CDC also indicates that in 2003 the number of live births in the United States was 4,093,000; of those births, 27,500 ended in the death of an infant under the age of one."

You are not alone in your heartache. Visit for more information on this awareness day, and Hannah's Prayer Ministries for comforting support resources as you learn to live a "new normal" without your sweet baby. A wonderful book that may also be a blessing to you as you process your loss and cherish your memories is the beautiful devotional journal, Grieving the Child I Never Knew by Kathe Wunnenberg - this book was a lifeline to me in the aftermath and midst of two of our miscarriages.

Noel, Joel and Hannah, you will forever be a part of my heart. Looking forward to meeting you face to face in Heaven some day, my sweet children. :)

Wednesday, October 14, 2009

Prescription of Hope

I'm struggling today. My heart hurts. I am overwhelemed.

I needed this reminder today from Heather at Prescription of Hope: Be Strong. Be Courageous. Heather, thanks for taking a moment to remind me where my hope comes from. :)

"Now may God, the source of hope fill you with all joy and peace as you believe, so that you may overflow with hope by the power of the Holy Spirit" Romans 15:13 (NIV).

Thursday, October 8, 2009

New Discovery Offers Hope for Chronic Fatigue Syndrome (CFS)

Today's announcement of the discovery of the XMRV retrovirus' link to to a debilitating neuroimmune disease that affects more than one million people in the United States, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), is of particular personal signifcance to me, offering such hope for answers and eventual development of reliable treatment for those of us living with neuro-immune illnesses like CFS.

I will be posting more on my own involvement with this research study and why I am so excited on my personal blog in coming days (today has been a very bad day for me physcially, and I'm just not up to posting much at the moment) but in the meantime, please find out more about this amazing breakthrough research at and be sure to read through the excelent FAQs they have posted for you there on the Whittemore Peterson Institute website.

Edited Oct. 10 to add link to my ongoing thoughts processing this news.

Other links related to this research:
NIH press release

More links to come...

Saturday, September 19, 2009

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.

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:

- 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.)

- 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 :)

- 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)

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)

Tuesday, September 15, 2009

Radio Link & Coping with Crisis of Top of Chronic, part 2

I just got off the phone from a wonderful radio chat with Lisa Copen, as one of 20 seakers for the free National Chronic Invisible Illness Awareness Week virtual conference. This was my second year to experience the blessing of sharing for NCIIAW - feel free to listen to last year's program on infertility, medications, chronic illness and the desire for motherhood at

This year we were talking about Coping With Crisis on Top of Chronic. I had the chance to share the first half of my notes for today's talk back in August and wanted to post a few more points here today. If you haven't had a chance to listen yet, please take an hour to join Lisa and I at today's archived show:
(Note to listeners who are currently facing infertility, Lisa and I are both after-infertility moms, her through adotpion, I through childbirth, and there are some references to motherhood, including the final caller who asked about deciding to have a second child while facing chronic illness.)

As was the only website address that was given out during today's radio interview, I also wanted to direct you to my sidebar where you will find links to several of my other websites and/or blogs. A few to highlight are:

Hannah's Hope is my book website where you can read a free chapter of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss and learn about other infertility and loss support resources. is pretty much my "everything" page and certainly my most personal blog. It's a slice of just about everything in my life from reflections on infertiltiy and loss, to the joy of motherhood after infertility. I talk about homeschooling, and writing, and work from home businesses. Here I share more details about my personal health journey in ongoing journal format, in contrast to the more devotional and slightly one-step-back from my ongoing personal struggles that tend to be more reflected here at Harvesting Hope™. And I love to toss in some "just for fun" stuff there, like the latest contest I'm entering or occassional give-aways from me. If you want the whole package and get to know the real me with the ins and outs of my daily heartbeat, is the blog you will want to follow.

Inner Beauty Girlz is the blog I referenced on today's radio show when talking about finding a passion. It started as a little place to explore my own curiosity about natural and affordable beauty alternatives and also to journal and reflect on God's call to make myself beautiful in spirit and how I can take things I learn about caring for my body and apply them to my thought life and attitudes.
I am a consultant with both Affordable Mineral Makeup™ and Gurrlie Girl™ Christian Jewelry so I also use this blog to post product information, discounts, specials and give-aways along with my beauty hits, tips, tricks and devotional reflections.

As a quick review, my first three tips for Coping with Crisis or Chronic (click here for detailed explanations of each) were:

1. Quiet Time
- non-optional daily priority, both to refresh body and spirit

2. Laughter is the Best Medicine
- seek joy even in dark seasons, not "Polyanna theology," but "Apostle Paul theology" as found in Philippians 4

3. Support Resources
- it is critical to find, or make for yourself, a support network

Added to these, my other three tools in my survival tool belt are:

4. Find a Passion
- When chronic illness hits, it's like a rug is pulled out from under my feet. Everything I have known and simply accepted is turned upside down. Things I took for granted in the past can no longer be presumed. Skills, abilities, perhaps even joys and interests, are suddenly lost. For example, I used to do counted cross stich constantly, but when CFS hit, I no longer had the strength in my arms to hold and stich, the mental focus to count and properly follow a pattern, nor the ability to focus my eyes on those little squares without triggering a migraine. This may seem like a small loss, but it was something that had meant a lot to me and brought me much pleasure for many years, then suddenly it brought only pain and frustration. Not only did I loose something I had loved, but because of my illness and the need to lay in bed for hours on end, I had much more "time on my hands" than I knew what to do with and what I normally would have turned to as a hobby wasn't even an option.

Part of the grieving process of chronic illness is learning to let go of what I can no longer do. But on the flipside, sometimes I am forced to explore new options I might not otherwise have ever considered, and this can be a blessing. I turned to writing, initially sending long letters to my fiance who lived far away, then I began journaling in earnest, and eventually I began writing articles for publication. Had I not lost my favorite hobby, I might never have ventured onto the internet and found a world of support resources, nor written a book, nor become a blogger.

My health struggles themselves led me to search out healthier alternatives for personal care products such as makeup (since I began having allergic reactions to all the chemically based brands I tried, even "hypo-allergenic" lines) and that led me into a whole new nitch of writing on beauty, along with leading me to become a consultant with companies I found to fit my needs. So while I'm too sick to work outside the home, the hobbies that my health unfolded before me have become a small source of "egg money" income that allow me to occassionally help out with a few little extras for our family budget and I find fulfillment in pursuing my new passions in the process.

5. Be Gentle with Myself
- Others may not be, so I need to be! There will always be those who don't understand, but I am the one who lives moment-by-moment with the ebb and flow of my body's demands. I can get caught up in all the "shoulds" that other people put on me, or I can be honest with myself about my needs and abilities and give myself some room to simply "be".

In my case, my doctor has made it very clear that if I push myself as hard as I can just because I have something left to give, that my body will never fully heal. I have always had a very driven personality and want to go and do and give. But if I cannot give myself permission to make my own needs a priority, I'm headed for permant disability and continued decline that will not be able to be reversed.

Putting this concept into practice can be more painful than I wish it were. For instance, I have a heart for anyone who may be lonely or hurting. When a new woman joined church recently, she commented that she had not been able to really establish friendships at her last church, so it became personal to me to see that she felt welcome and found a sense of community quickly. She readily accepted my invitation to come over with her kids for the afternoon, though I had to postpone it several weeks due to ongoing health issues. She then exchanged the invitation and generously watched my kids for several hours while I went to the hospital to be with my parents for my mom's surgery. Since then I've not only been involved with my mom's recovery, starting a new homeschooling year with my kids, but have had a lot of medical procedures, appointments and endless medical phone calls to keep up with, including a trip out of state to see the only specalist my insurance would cover.

I simply find myself too exhausted to reach out right now. She's left the ball in my court with "call me if you want to connect," and my heart aches that she may feel like I don't want to befriend her, when the truth is that I would like nothing more, but simply have nothing to give right now. I have vaguely explained my health to her and will do my best to explain my heart and my physcial reality in more detail soon (hard topics to plunge deeply into with a brand new friend), but in the end I will simply have to accept my limitations and realize that we will have to "do friendship" on the terms by body sets forth for us, and I'll have to be OK with that reguardless of how understanding she may or may not turn out to be.

6. Let Go and Let God
- All of the above tools ultimately point to one simple fact. I can't do it all! I must let go of unrealistic expectations of myself (and of others - it's easy to become disillusioned when others I depend on or place my hopes in fall short of my expectiations) and look fully to God as not only the source of my strength, but the one who gives wisdom and directs my steps moment by moment.

He never has unrealist expecations of me. He is always gentle with me and knows, truly understands, what I face moment by moment.

My job is simply to do what He calls me to for this moment and leave the rest to Him. Some days that may simply be getting through the day without giving into utter despair that I can't raise my arms with enough strength to brush my hair. Some days that may be trusting him that if my new friend needs friendship that I'm not equiped to give, that maybe I'm instread called to pray that God will meet that need for her through someone else.

When recently undergoing some very frightening treatments that had me reflecting on my own mortality, I realized that I was not really handing the reighns of my life to God. I had written love letters to every family member and placed them in my journal where I thought they would be found if I should die. I was peaceful about the prospect of death for my own sake, but I was a ball of nerves for the sake of my husband and children, grieving for them about what they might endure should I die. And then it occured to me of how arrogant I was being, to say I could trust God with my eternal future, but then actively distrust Him to have a perfect plan for my husband and children!

Just simply realizing that a God big enough to hold my eternity in His hands would have a great plan for my family too was a significant "letting go" moment that marked a wonderful return to a peaceful heart for me. As it turned out, I was His ongoing plan for my family and I had let myself get all worked up for something that never was really even an issue, but I pray that I will hold onto that life lesson next time I'm tempted to try to micro-manage God's plan rather than just resting in Him that He will take care of every need, big or small.

I would encourage you to take advantage of any or all of the 20 Invisible Illness Week seminars available to you this week, and archived for ongoing listening, at Please log back in here at again on Saturday as well, for a special post on Hope in the Shadows as part of the (In)Courage blog tour.

Sunday, September 13, 2009

National Invisibile Chronic Illness Awareness Week

I will be presenting at noon (Pacific) this Tuesday, on the topic of Coping with Crisis on Top of Chronic...

SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.

In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.

Well known Christian authors who will be presenting include:

• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009)
• Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008)
• Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009)
• Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008)
• Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005)
• Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005)
• Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004)
• Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)

Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”

Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”

Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”

Rest Ministries extends their outreach about invisible illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.

Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, “It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week, which they sponsor annually.”

One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.

See for more information or for the sponsor of this event, Rest Ministries.

*Source: Chronic Care in America, U.S. Census Bureau

Wednesday, September 2, 2009

You Are God's Masterpiece, So am I

I've run across this video from two different sources within just a few hours. Makes me think God might want me to share it here with you too. :) Takes about 9 minutes to watch, but well worth the time!

My favorite line, "But God I've let you down so many times."
God's reply, "No! I was holding you up!"

Thursday, August 27, 2009

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!

Wednesday, August 26, 2009

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!

Tuesday, August 25, 2009

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!

Friday, August 21, 2009

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 for "part two" of these notes or listen to the radio program at

Thursday, August 20, 2009

Will You Help Me Dance? (Chronic Fatigue Syndrome)

I've lived with a serious, disabling and chronic neuro immune illness called Chronic Fatigue Syndrome (CFS) for the past 19 years. This illness goes by many names including Post-Infectious Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and in the past was known as chronic Epstein-Barr virus (CEBV). You can find out more and learn the answers to questions such as, "What is ME/CFS?" or "Is it contagious?" by visiting the FAQs at the Whittemore Peterson Institute's website.

The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.

Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!

Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?