Sunday, November 2, 2008

Quotes to Ponder

I'm preparing for surgery in a couple of weeks and in the meantime the tummy flu is making its way through our family. Since I haven't been posting too often and probably won't be posting a lot over the next couple of months (surgery and recovery) here are a couple quotes I've run across the last few days that I wanted to share as encouragement and edification...

"For every minute you are angry, you lose sixty seconds of happiness."
- Ralph Waldo Emerson

"Faith is not belief without proof, but trust without reservation."
- D. Elton Trueblood, (20th Century American Quaker and theologian)

Sunday, September 21, 2008

When All is Stripped Away

The following blog entry was first written last April for my Inner Beauty Girlz blog. If you are struggling with things you wish you could accomplish but running up against limitations, I pray that it will be a blessing to you today. I thought to repost it because I have been feeling much of the same discouragement lately and after reading The Crippled Lamb to my daughter as I tucked her in for bed tonight, I was once again encouraged. That story never fails to uplift me!


Sitting in church a couple of weeks ago I was simply too tired to stand for the singing time. This isn't at all uncommon - I sit through music time more often than I'm able to stand. (There were years when I rarely could leave the house to attend church at all, so just being able to be there is HUGE!) But as I am sitting I am usually singing and Signing (Sign Language) and stiving to give my whole heart over to worship.

Unfortunately, I started having asthma attacks about 3 years ago and I've found singing to be a frequent trigger. So on weeks when I can't sing either, I grab my inhailer, stop the asthma attack in its tracks, and consentrate on joining in musical worship through Sign. Recently I've found my arms to "heavy" and the pain too instense even to Sign consistantly. So a couple of weeks ago I sat there in church feeling very dejected and asking the Lord what I had left to give. How I could participate in corporate worship when I had nothing left to offer, no strenght to stand, no breath to sing, no ability to even lift my hands in praise?

Though not the song being sung that morning, He immediately reminded me of the words of Matt Redman's song, "The Heart of Worship" (view on uTube link below). A few of the lines are:

When the music fades, all is stripped away, and I simply come
Longing just to bring something that’s of worth that will bless your heart...
I’m coming back to the heart of worship, and it’s all about You, Jesus...

What a great reminder that everything else is external (physical strength, the gifts of voice and hands, every breath I draw) but true worship, like true beauty, is internal. When everything else is stripped away, I am still of worth, I can still be whole, because of who Jesus Christ is. He is worthy of all I am, all I have to offer, even when my offerings are meager.

"The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise." Psalm 51:17 (NIV)

If you or someone you love is struggling with health issues, check out Rest Ministries, a wonderful organization providing support and encourgement in the face of any and every kind of chronic health challenge. This group was started by a friend of mine and has grown into an international ministry offering local support group chapters, a print magazine and many forms of online support including daily email devotionals, message bords and much more.

(If you are reading this via email and can't view the video, be sure to drop by the Hope Harvesters™ Blog to see this beautiful video for yourself.)

"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever."

- Psalm 73:26 (New International Version)

Thursday, September 11, 2008

Well With My Soul

In 1873, Horatio Spafford wrote the words to the hymn "It is Well with My Soul" after the tragic death of his four daughters. This powerful video is a great reminder of God's faithfulness even in the midst of the greatest of storms.

Tuesday, September 9, 2008

Infertility and Illness Radio Link

I've been talking about National Invisible Chronic Illness Awareness Week since my very first post here. Well, NICIAW is finally upon us and I had the joy of talking about Medication, Illness, Fertility and the Desire for Motherhood with Rest Ministries founder, Lisa Copen this afternoon. If you missed the live broadcase, please turn in to the archived program at

Monday, September 8, 2008

Blog Talk Radio

Tomorrow at noon (Pacific) I’ll be sharing a Blog Talk Radio broadcast about Illness, Medications, Fertility and the Desire for Motherhood as part of National Invisible Chronic Illness Awareness Week. Infertility is an invisble illness that, like many other chronic illnesses, is often misunderstood. When you live with both infertility and other chronic health challenges too, life can get really complicated! Tune in on Tuesday and let me share a bit of my own story, then call in and share your throughs and questions about growing a family while facing chronic illness.

In the midst of all the physical challenges of both infertility and Chronic Fatigue Syndrome, the spiritual journey was even more intense for me. I wrestled with God, struggling and asking and demanding and pleading with him to remove the pain both in my body and in my heart. Like Paul with his “thorn in the flesh” I repeatedly “pleaded with the Lord to take it away from me…” I wanted nothing more than to be a mother and I couldn't understand why that joy came so easily to all my friends while I soaked my pillow with tears month after month. David’s words resounded with me, “I am weary with my groaning; all the night make I my bed to swim; I water my couch with my tears” (Psalm 6:6).

I sunk into deep depression, even contemplating suicide. It seemed so unfair that nothing in my body would work as it was designed. If I couldn't even acquire something as basic and natural of pregnancy, I just couldn't see any use God could have for a woman like me. Job’s words captured my despair perfectly, “I prefer strangling and death, rather than this body of mine. I despise my life; I would not live forever. Let me alone; my days have no meaning” (Job 7:15-16, NIV).

Desperate words? You bet! I was a desperate woman. But by God’s grace, and through a long, slow processes of healing my heart, He did not leave me to my own desperation. “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” (Psalm 4:2, NIV). I wanted healing, instead He chose to say, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Cor. 12:9). Come join us on Blog Talk Radio and find hope in the midst of your heartache too!

Thursday, September 4, 2008

My "Other" Invisible Illness

I am a mid-30s, homeschooling mom of three energetic children. To look at me you would never guess that I’ve lived with invisible chronic illness since my teen years. I “look” perfectly normal. Chronic low-grade fevers give my cheeks a rosy glow. I usually take great care in the way I dress and apply makeup because feeling bad is hard enough, I really don’t want to “look the part” too. And no, you’ve probably never seen me on a really bad day because if I can’t get out of the house, or even out of bed, well you don’t see me out and about on those days!

There are occasions when my illness refuses to remain invisible, like when I gratefully pull into a handicap parking spot, relieved for every single step I can cut from my errands as I stagger under debilitating exhaustion or when each step sends searing pain through my body. Or maybe it is still invisible even then, because I sure get some strange looks as I climb out of the van and unload my three, none of us in obvious need of that blue license plate! I can understand the confusion on their faces, for even my closest friends don’t realize what I’m facing until I share with them my daily reality. Still my heart stings to think those parking lot strangers might believe I’m abusing a privilege that I anything but take for granted!

I could claim many labels including Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomelitis (ME), fibromyalgia (FM), human herpesvirus six (HHV-6), multiple chemical sensitivities (MCS), Temporomandibular Joint (TMJ) and several others. But today it isn’t my severe and persistent fatigue, tender/swollen lymph glands, impaired memory and concentration, headaches, sleep disturbances, sore throat, joint or muscle pain that I’m here to talk about. Today I want to share about the heartache of my “other” invisible illness…

Infertility. Yes, I know I introduced myself as a mom of three. And yes, they are all our biological offspring. I’m still in awe to have three precious miracles, spaced almost exactly three years apart each time. No one would guess that it took us seven years, one confirmed (and several suspected) miscarriage(s) and much medical aid to have our first; another two years, two miscarriages, extensive surgery and medication to conceive the second; or that between the three pregnancies I spent 26 weeks on bedrest fighting to carry them each close enough to term to give them a chance at healthy, live birth.

You would never know, looking at these three, that not only do they have multiple siblings awaiting them in Heaven due to my miscarriages, but that we also tried to build our family through adoption seven different times. Each time we were left with empty arms and broken hearts. Adoption is a wonderful experience that I still hope God may someday have in store for our family, but for many reasons it is certainly not an “easy answer” to infertility!

While many people think of infertility as simply the inability to have children, this invisible chronic health concern often impacts much more than just reproductive organs. For women, endometriosis, polycystic ovarian syndrome (PCOS), and multiple other causes of infertility can lead to debilitating pain, extreme cycle irregularity with hormonal imbalances that can significantly impact insulin levels, weight, emotional stability, and greatly increase cancer risks. Deep cystic acne, excessive hair growth (in all the wrong places), and increased chance of miscarriage should conception ever occur, are also all concerns linked to certain causes of infertility. While I am a mom of three living miracles now, many of the medical issues surrounding our years of barrenness remain daily concerns for my current and long-term health picture. A couple’s infertility is just as often due to male-factor causes as female ones, and men also face unique health issues as a result of reproductive challenges.

Infertility isn’t just “not being able to get pregnant.” It is a medical condition that is almost always invisible, and as you might imagine, can become extremely complicated to manage for those of us who also face other chronic health conditions, as one set of medications and side-effects interacts with another! Just as any other chronic health challenge cannot be wished away, infertility is not simply solved by “relaxing” or going on vacation or having my husband wear boxer shorts. Studies have shown that the stress and depth of grief experienced by many infertile couples is parallel to that of cancer patients. So next time you are in a social setting and trying to get to know a new friend, why not open with, “Tell me about yourself,” rather than asking the question dreaded by every infertile woman, “Do you have any kids?”

I’m so thankful to be involved in National Invisible Chronic Illness Awareness Week because I can’t always tell someone’s story just by looking at what seems to be the obvious! As we all become more aware of one another’s struggles, hopefully we can become a more caring and compassionate people.

Jennifer Saake has lived with endometriosis since puberty and fibromyalgia since high school. She experienced the dramatic onset of CFIDS/ME her freshman year in college, 18 years ago this September. After dropping out of school and spending most of the next two years in bed, she married her sweetheart, Rick, who saw her as more than just an illness. Together they struggled to grow their family through a decade of infertility and multiple losses, including the diagnosis of PCOS with insulin resistance.
Jenni is the co-founder and Director Emertis of Hannah's Prayer Ministires, an international support ministry for families facing fertility challenges, and is the author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage & Adoption Loss (NavPress, 2005).
Hannah's Prayer Ministires at

Wednesday, September 3, 2008

I'll be on blog radio next week!

Press Release:

Christian Organization Unites the Millions Who Live with Invisible Illness

Contact: Lisa Copen, Rest Ministries, 858-486-4685,

MEDIA ADVISORY, Sept. 3 /Christian Newswire/ -- Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of the illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, an affiliate of Joni Eareckson Tada's International Disability Ministry, is encouraging those with illness, as well and family, caregivers, and churches through their annual outreach event, National Invisible Chronic Illness Awareness Week, September 8-14, 2008.

This year the week features 20 workshops with well-known guest speakers who will be presenting and answering questions via Blog Talk Radio, September 8-12.

Speakers include:
• Leslie Vernick, author of The Emotionally Destructive Relationship (Harvest House, 2007)
• Julie-Allyson Ieron, author of The Overwhelmed Woman's Guide to Caring for Aging Parents (Moody, 2008)
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Jennifer Saake, author of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005) [Listen to this broadcast at]

Lisa Copen, 39, founder of Rest Ministries says, "Since we began in 1997 we've found that despite the strong foundation Christians may have, illness can rock it. Feeling like no one understands how much your life has changed since a diagnosis can be more spiritually detrimental than the illness itself. It can make one feel isolated, misunderstood and even bitter."

Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four explains why Invisible Illness week matters. "Those with illness do have to accept that other people aren't going to 'get it.' Only God understands. But it's nice to encourage peers and find strength in validating the mixed emotions. You don't have to explain why walking twenty feet may be impossible some days."

Rest Ministries extends their outreach about 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. Rest Ministries is dedicated to educating churches to not only serve the chronically ill, but to involve them in the church body. 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."

Get involved by joining the hundreds of people who will blog about invisible illness on September 8th, attend a seminar, or tell someone who has an illness about the event. Typically, people with illness are unable to attend a traditional conference, so a "virtual conference" is widely anticipated. All seminars will also be recorded and archived.

See Rest Ministries is at

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

Press Release written by:
Lisa Copen
Rest Ministries, Director
HopeKeepers Magazine, Editor

National Invisible Chronic Illness Awareness Week
Founder & Coordinator

This is the theme of 2008’s National Invisible
Chronic Illness Awareness Week in September.
Drop by and find out ways to encourage a
friend, be encouraged yourself, and spread the word. and our blog

Wednesday, August 27, 2008

Grieving with Hope, death of Steven Curtis Chapman's daughter

I was first introduced to the music of Steven Curtis Chapman on my wedding day, a little over 16 yeas ago when my husband dedicated Go There With You to me at our wedding reception. Over the course of our marriage, Rick and I have had our share of "highest mountains" and "raging seas", as have the Chapman family. Steven's songs have continually blessed and resounded with my heart. My husband has even teased me a few times about having a "crush" on SCC because I talk of their family and his music so much. (For the record, my only crush is on the man who introduced me to this music, my amazing husband!)

Through the years I've followed the Chapman family's story and read just about every media release or article I've seen. I've felt a deep connection to them that doesn't feel to me simply like a celebrity following, but a longing to know this family as friends - something I know probably will never happen in this lifetime, but I look forward to in Heaven. I've been encouraged and challenges by Mary Beth's struggle with depression, watched with tears and joy as God has called the Chapmans to adoption as we also prayed through and pursed adoption (though that was not God's plan for our family at that time), and have referred many friends to Shaohannah's Hope for adoption financial aid.

Though it's not a possibility for us right now due to my physical limitations, R. (our five year old daughter) talks about wanting to adopt a baby sister from China on at least a weekly basis. This has been a topic in our household even since before we were blessed with our three biological children, but has been especially reignited since our neighbors brought their daughter home from China 18 months ago. So early on the afternoon of May 21st I sat snuggling my kids and reading Shaoey and Dot over and over and over upon their request. Later that afternoon I was stunned to stumble across an internet story stating that the Chapman's youngest daughter, Maria Sue, had been killed that very afternoon, probably during the very hour we were reading, in a driveway accident at their home!

The Chapmans have never been far from my prayers these past three months. And now they are beginning to talk to the world about all that has happened in and since the shattering loss of Maria. They are truly Harvesting Hope from one of the most devastating forums of heartache. In their recent interview with ABC Steven explains, "In grieving this process there is a hope that we have, that we are anchored to, in the midst of what sometimes seems unbearable." No, it isn't joy and roses, nor should it be! They are a real family, in real pain, living out a real faith.

Mary Beth continues in the same ABC interview, "As I've stated somewhat coldly, I don't care who's lives are touched by this story, and who's lives are changed, or what good comes of this, as the heart of a mom, I want Maria back! BUT... because of my faith I know that she is completely whole and completely OK and I'm going to see her again, as a mom I have to shift that grief... to making sure [my living children] are as whole and as healthy as they can be. And through that then, when people's lives are touched and changed, then I can be OK with that. But as the heart of a mom, I would like to have Maria back."

In a People Magazine article , Mary Beth is quoted as saying, "I'm broken and I would give anything to have my baby girl back. But that's not going to happen. So I wake up in the morning and make a choice. You can wallow in the deep end, or you can say, 'God show me what you want me to be about today and how I can honor you, and in turn honor Maria'."

One tangible way that the Chapman's have become Hope Harvesters through their great sorrow is through Maria's Miracle Fund where donations were sent after Maria's death, in lue of flowers. This fund has now raised well over $600,000 to help unite the world's orphans with their forever families. The special needs healing home that Shaohannah's Hope (the adoption and orphan care ministry founded by Steven and Mary Beth Chapman) will open in October in Luoyang, China will be named Maria's Big House of Hope, and will care for orphans with medical impairments such as cleft palate, clubbed feet, urological disorders, blindness, and neurological disorders.

If you would like to hear more from the Chapmans on the life of Maria Sue and how they are grieving with hope since her death, Focus on the Family has been airing an interview with the Chapmans over the past three days. Listen to The God of All Comfort here. There are several other articles and media interview links posted at

Wednesday, August 20, 2008

Know someone who really needs a laptop?

It all started with a little boy who is fighting multiple critical health concerns and the realization that his mother is house-bound, usually bedroom-bound with him, and has very little way to communicate with the outside world. When they are admitted to the hospital (frequently) again she is cut off. 5 Minutes for Mom stepped in, and teaming up with HP computers, blessed her with a free laptop!

And now they want to change one more life in the same amazing way. 5 Minutes for Mom and HP computers are offering an HP Pavilion dv5t Entertainment Notebook PC and an HP Photosmart C4480 All-in-One printer to one truly needy/deserving person/family. They are currenly seeking nominations (including self-nominations) through Aug. 27. To find out more, or to submit your nomination, read the full and amazing story at Blogs Can Change Lives...Want to Help Us Change One?

Whittemore Peterson Institute

I am thrilled to announce that the Whittermore Peterson Institute for Neuro Immune Disease has just launched their website!
According to their publication, “The Whittemore Peterson Institute’s mission is to facilitate and advance patient care, research the patho-physiology and develop therapeutics, diagnostics and prevention strategies for a spectrum of neuro-immune diseases.”

They are facilitaing research on the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism, seeking to develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases, and to advance and support medical education and physician training. "The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.
"Our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining a blood and tissue repository and a clinical database for ME/CFS and ultimately for other neuroimmune diseases is a primary focus of the Institute."

I am thrilled to watch this world-class research unfolding right in my own city and look forward to being a patient participant in their research studies!

Tuesday, August 19, 2008

Have you been helped through counseling?

I received the following request through a dear friend of mine, Lisa Copen (Director of Rest Ministries, Editor of HopeKeepers Magazine and Founder/Coordnator of National Invisible Chronic Illness Awareness Week). I do not know anything about the author, but this project sound very helpful

Lucille Zimmerman is seeking story submissions. She writes, "Are you a Christian who relied on faith and prayer, only to find great healing at a later point, through counseling. I am writing a book - a plea for Christians to recognize clinical counseling as a beneficial tool, in addition to faith and prayer - looking for people to share their stories anonymously." Please contact Lucille directly at
Deadline: 8:00 AM MOUNTAIN - August 30

Wednesday, August 13, 2008

The Harvest Cycle

I originally posted the following entry on my Hannah's Hope book blog this past February. These are the notes from a 45 minute talk I shared with women from our church, so obviously it is only an outline, but I pray there is something here that challenges, encourages or blesses you. After each phase of the harvest cycle, listed in bold, are the emotions a grain of wheat might experience as it prepares for its final purpose.

God put on my heart the topic of Harvesting Hope from Heartache™ based on Psalm 126:5-6 that says, "Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him."

- Planting – darkness, suffocation, loneliness

No one is immune from heartache. Even when I can’t feel Him, God is always there.

I shared the opening portion of Hannah's Hope chapter one, Hannah's loss of innocence and my story of attending a party as an infertile woman, to illustrate the isolation and darkness of the planting season.

Where can I go from your Spirit? Where can I flee from your presence? …If I make my bed in the depths, you are there… Even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. – From Psalm 139:7-12

- Waiting – seemingly endless, pointless, impatience

God’s “protection” may leave me bewildered, but He always has a plan for my good.

Read the "Wait" poem.

“…For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. – Jeremiah 29:11

- Sprouting – new, fragile, reaching out

God wants my honesty. Where am I placing my hope?

Shared personal experience of being angry with God, yet being unwilling to admit my anger, followed by the freedom of "letting Him have it" and being truly honest. Also the realization that I was placing my hope in a child rather than in God and the attitude changes He needed to bring about in me.

You will seek me and find me when you seek me with all your heart. – Jeremiah 29:13

- Growing – stretching, exposed to the elements - hot sun, pounding ran, buffeting wind

God is personal. He cares about every need. He wants me to rely on Him.

Personal stories of God meeting me in places of need both in chronic health challenges and in infertility and other desires of my heart like the longing for a piano.

I pray that out of his glorious riches [God, the Father] may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. – Ephesians 3:16-19

- Reaping – cut, dry, gather, bundle

God does not intend for me to “do life” alone.

The beauty of fellowship, belonging and finding others who understand by personal experience. Contrast to the lonilness of "planting".

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. – 2 Corinthians 1:3-4

- Threshing – separating chaff from good grain, sometimes by stomping or throwing

Sometimes it gets harder before it gets better. God will help me persevere!

Struggle with fears during pregnancy and adjustments in parenthood. Sometimes "having just what I want" isn't quite what I pictured.

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. – James 1:2-4

- Refining – grinding, mixing and baking lead to nourishment and pleasure

When seasons of heartache are over, I should celebrate what God has done!

Sometimes rejoicing is obvious, such as celebration over the long-awaited gift of children. Other times it is less obvious, like learning to rejoice in over 17 years of ongoing pain and illness. God is good, all the time!

Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him. – Psalm 126:5-6

Tuesday, August 12, 2008

Living Fully Through Life's Trials

I've had this blog name reserved for some months now, ideas swirling around in my head. It's taken thoughts of National Invisible Chronic Illness Awareness Week coming this September 8-14 to spur me on to finally take this blog live.

Harvesting Hope from Heartache™ is a concept that captures many aspects of my life. I was blessed to be introduced to Jesus Christ at a very young age. By understanding my inability to reach His standard of perfection on my own and asking His to be my Guide through this life, my childhood was full of life, enthusiasm and hope. When painful realities of adulthood struck, my faith was tested, nearly shattered more than once. Yet hope in Him has ultimately been the anchor to my soul, even when that anchor rope seemed frayed and worn.

This blog is dedicated to hurting hearts that are reaching out for hope in any aspect of life, giving special attention to the heartaches God has carried me through - the loss of health, loss of friendships, loss of livelihood, loss of fertility and multiple losses of our children. It will share articles, resources, links and encouragement for seeking hope in the midst of life’s darkest moments. I will never sugar-coat the realities of pain, but I also cannot leave my readers floundering in hopelessness. Please join me in learning to harvest hope together from our heartaches.

Before I begin sharing resources, let me give you a little background about my own story. We never lived anyplace longer than two years until I hit high school, so I clung to my relationship with Jesus through all the ups and downs of continual moves and the accompanying need to let go of and rebuild friendships over and over. But our relationship was never fully tested until shortly after my 18th birthday. I woke up one morning feeling fine, and by mid-afternoon my life had changed forever, though I really didn't understand how dramatic the change would be for a while.

I had just moved again, this time away from home and family for the first time. I was on a crazy schedule with college dorm life and cafeteria meals, so it wasn't surprising that when "the flu" swept through campus, knocking 2/3 of the student body off our feet, I was put out of commission as well. The unsettling part came when everyone else returned to normal life while I spent the majority of the semester shivery in bed or counting the painful minutes until class would be over so I could put my fevered, aching body and swirling, foggy head back to bed.

That was 18 years ago this September, literally half my lifetime ago now. For my entire adult life I have lived under the shadow of an invisible chronic illness. It took many months to reach the diagnosis of Chronic Fatigue Immune Dysfunction Syndrome (CFS or CFIDS, sometimes also called Myalgic Encephalomyelitis or ME) and years to eventually stack up my “grocery list” of additional diagnosis also including Fibromyalgia, TMJ, endometriosis, polycystic ovarian syndrome (PCO, PCOS, or PCOD), neurally mediated hypotension, and the list goes on and on…

[Update: In October, 2009, I learned that I am positive for a newly-discovered retrovirus liked to Chronic Fatigue Syndrome. This virus was originally named XMRV – Xenotropic Murine leukemia virus-Related Virus but further research unfolded an entire family of closely related Human Gamma Retroviruses (HGRVs). It is very possible that I have actually carried one or more HGRVs since childhood, perhaps even acquiring it many years before the full onset of my CFIDS symptoms that I experienced at age 18. (HGRVs are only the third known infectious retroviral family in the human population, along with HIV and HTLV.)]

I am among the fortunate who have actually been given answers, even when there is no cure. Many are debilitated with such painful conditions, yet live for years without understanding why, struggling day to day to cope in a world that only sees a healthy looking body without many (sometimes any) obvious signs of illness. They are accused of being lazy and no one understands the effort simply to get out of bed and put one foot in front of the other. Few see the days we can’t get out of bed at all. We are told “You must be feeling better because you look so good!” and we paste half-hearted smiles on our faces because it just isn’t worth expending the effort to try to explain the daily reality of living with invisible illness.

Just a month after getting sick, I was blessed to meet a man who didn’t define me by my illness, who loved me not for what I could or could not do, but for who I am. Neither of us had any idea that we were up against a lifetime of illness, but as the months of grueling testing passed, we were faced with the very real potential that this yet-unnamed villain might easily prove to be fatal. I tried to free him from our engagement, yet he stubbornly refused to leave my side. We will celebrate 16 years of marriage this weekend and he has been such a blessing through the many ups and downs of life including the loss of our first business, deaths of many extended family members and all the daily trials of living that continue over and beyond chronic illness.

Fully knowing that parenthood could be a challenge given my poor health, we both desperately wanted children and (some say foolishly) jumped into the pursuit of parenthood shortly after our wedding. Seven and a half years later we were thrilled to bring home our 4 pound, 13 ounce miracle. The road to him took us through one miscarriage, seven adoption losses, surgeries, fertility drugs including daily hormone injections, Hyperemesis Gravidarum (severe nausea and vomiting during pregnancy that goes far beyond typical "morning sickness") and an almost indescribably emotional roller coaster of grief, hope and yet more grief. Infertility drove me to almost let go of the hope anchor all together, at my darkest hour even seriously considering ending my own life.

After two more miscarriages and being given less than 5% chance of ever conceiving again even with medical aid (with even less hope of carrying to live birth if we could conceive), our son was joined by a baby sister three years later. She kept us on our toes by launching my body into preterm contractions at 25 weeks (full term pregnancy is 40 weeks) and keeping me on bedrest, hospital visits and preterm labor medications over the next 13 weeks. After waiting and wanting so long, I was stunned to face 2 years of post-partum depression after her birth. We are still rebuilding the bonding we lost over that first two years of my emotional distancing.

After being advised not to pursue another pregnancy for medical safety, we were shocked to find ourselves expecting our second living son, born 2 days before his sister’s 3rd birthday. There were many emotions to process with this pregnancy: joy obviously, but also much fear, disbelief, even some anger. By the time of his birth we were beyond thrilled to welcome him into the family and praise God for His good gifts, but it was a surprisingly hard adjustment to have an unplanned pregnancy, especially after all the grief and heartache that had gone into trying so hard to grow our family through ten years of primary and secondary infertility! Contractions and bedrest started with him at only 19 weeks, but the severe asthma I experienced while carrying him actually proved to be to our advantage with my inhaler steroids frequently helping to slow contractions while also helping to mature his lungs for his month-early delivery.

And yes, parenthood has proven to be challenging. There are days when I cannot even care for myself, leaving me feeling helpless as the mother of 3, ages 8, 5 and 2! It is in these most challenging days where seeking joy and hope must become an active pursuit. I pray that my story can be a blessing and encouragement to others and that we can learn together to harvest hope from our heartaches. Please add your email address to my mailing list and leave comments to share your story with me too!

[UPDATE Feb. 2012  Last fall, Oct. 2011, I experienced multiple strokes with brain-stem involvement. I have vision loss, hearing loss, a partially paralized hand, and I cannot walk.]

Blogs for My Books:
Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss NavPress, 2005

Give a Thorn: Encouragement Amidst Chronic Pain and Illness, Through the Eyes of Paul (working title, book still in process)