Fighting Infections

Dr. Jacob Teitelbaum offers some interesting tips and helpful suggestions for fighting the range of infections that can come with a compromised immune system. Fighting Those Persistent Infections in CFIDS

Prayer May Reshape Your Brain

I was just thinking this week about the study of prayer's impact on In Vitro Fertilization (IVF) pregnancy results, so it was fascinating to me today to find this study about the impact of prayer or meditation on the brain and body. (Andrea, thanks for the link!) The article is written from a secular perspective and lumps all "religious people" and kinds of prayer/meditation together, but I still found it to be an interesting field of study as reported by NPR: Prayer May Reshape Your Brain

Is science finally figuring out what God's said all along? "The effectual fervent prayer of a righteous man availeth much" James 5:16b. (KJV)

Gift or Curse?

I found this video link to David Ring after reading (in)Courage today, where Allison Morrison shares about raising her long-awaited son Sam, who was born with Cerebral Palsy. She writes,

"I’m not gonna sugar coat it–we just could’ve done without CP in our lives. But God saw fit to give it to us anyway. So what do we do with it?

"Before last night we would’ve bumbled along doing the best we could praying for a miracle healing. But after hearing David speak it’s a whole new ballgame... [CP] is our opportunity to show others how God has been good to us. Did we ask for CP? No way. Did David? Nope, but as he said he wouldn’t trade his life for a minute... He is blessed and so are we–so is Sam.

"It is up to us to help Sam develop his full potential and then to get out of the way and let God work. We gave Sam to God when he was born and we have to accept how God intends for him to be.

"We must not waste this opportunity that we’ve been given. We have been entrusted with something sacred and we have to praise Him and trust His plans for us!"

Visit Alison at (in)Courage to read more.

As Joni Eareckson Tada says, “God aborts devilish schemes to serve His own ends. God permits what He hates to accomplish that which He loves. Heaven and hell can participate in the exact same event, but for different reasons.”

XMRV / ME/CFS Ad Campaign

Press Release:

CORAL GABLES, FL, DECEMBER 6, 2010 – In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.

ME/CFS first gained national attention amidst the AIDS epidemic in the early l980s. As early as l99l, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

“This can happen to anyone,” said Sita Gange Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now.”

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7 % of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

“The NIAID, the national institute responsible for infectious disease research, has yet to fund outside grants for XMRV research in ME/CFS,” explains Annette Whittemore, President of WPI. “WPI has had its last six XMRV-related grant proposals turned down; despite the fact that researchers have shown XMRV is transmissible and infectious.”

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Because ME/CFS is not a women’s disease and is associated with infectious pathogens, the patients are asking that XMRV-related diseases be moved from the Office of Women’s Health to the NIAID. Patients are also seeking support for clinical trials of drugs shown to be effective against XMRV and other infectious organisms found in those with ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .



About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:
Sita Gange Harrison/Tina Tidmore
561-313-1835
205-680-6890
Media@mcwpa.org

This on the heels of last week's Red Cross announcement that they will be banning blood donations from people diagnosed with CFS. While Red Cross isn't specifically saying they are concerned about XMRV in the blood supply, it is logical to conclude this is their reasoning behind such a ban, following the lead of several other countries who have blocked blood donation from Chronic Fatigue Syndrome patients due to clean blood supply concerns.

Thankful for Thorns

If there was ever a story more perfect for this blog, I sure don't know what it would be. Puts "thorns" in a whole new light! Please take a moment to follow this link...

Thankful for the Thorns

The whole story is beautiful, but line that really hit me was, "Remember, it was a crown of thorns that Jesus wore so we might know His love. Don't resent the thorns." Wow!

Surviving

Bonnie Gray shared some great thoughts on Surving the In-Bwtween Times today over at (in)Courage. What really stood out to me was her thoughts on John 15:5.

"Abide in me and I in you and you will bear fruit." John 15:5

Abiding doesn’t sound impressive. I doubt it’d make a good marketing slogan or create much buzz in today’s speaking circuit. Kinda archaic compared to our self-made headlines.

Yet, it is the one action Jesus reveals in His secret to living a fruitful life. What does it actually mean? I wondered?

The Greek word for “abide” is Meno

1. to survive

2. to be held

3. to wait

I was stunned. Simply surviving makes a difference to God...

Traveling with "Baggage"

While I am in no condition to travel these days, I have dreams that someday I will be improved enough to consider leaving my own hometown for reasons other than medical needs once again. When living with chronic illness, these kinds of things have to be carefully planned and strategically plotted. You can't just "pack up and go" but need to think through so many things. I remember one cross-country trip several years ago where the airline mangled my wheelchair in their checked baggage handling, then would not cover the damage claiming it didn't qualify as checked baggage in the first place (though they didn't bother warning me before accepting it when we were preparing to board).

I know for some of us (physically or financially) travel is limited only to our dreams. But dream a little with me. Where would you go if you could travel anywhere? Why would you choose that destination? What preparations would you make to make this trip as do-able as you could?

The last fun trip I took was a little over a year ago with my family. We won a week's free RV rental and I learned that taking a "home" on wheels was a fairly workable solution for my travel/health needs. I blogged the entire trip Classic RV Adventures.

What are your best travel tips for navigating away-from-home with chronic health challenges? Do you know of helpful travel websites or resources? I stumbled upon one today called Disability Holidays Guide that prompted this post. Is there are tool or tip you don't leave home without? How do you manage medication, sleep schedules, special transportation needs? Please share!

Why Affliction?

Diane Bucknell shares some great thoughts on how Our Suffering of Illness is Meant to Go Far Beyond Just Us over at Rest Ministries. In part she writes,

The doctor said I would be better in 18 months. Having a young family to care for, that pronouncement was devastating. Little did I know it would be 10 years before I would feel reasonably well again and by that time the children were grown. I was bedridden most of the time for the first several years and depended on my family to help me with the normal daily activities like shopping and housework. My only outings for the first 2 years were to the doctor for weekly treatments. There were many times that I didn’t know how I could survive one more day of being so sick....

Psalm 27:13-14 was my lifeline of hope which I clung to daily:

“I would have despaired unless I had believed that I would see
the goodness of the LORD In the land of the living.
Wait for the LORD;
Be strong and let your heart take courage;
Yes, wait for the LORD.”
When God does one thing, He’s doing many things at the same time.

* Affliction drives us to dependence: “My eye has wasted away because of affliction; I have called upon You every day, O LORD” Psalm 88: 9.
* Affliction drives us to obedience: “Before I was afflicted I went astray, But now I keep Your word.” Psalm 119:67.
* Affliction purifies us: “For You have tried us, O God; You have refined us as silver is refined.” Psalm 66:10
* Affliction is humbling: ” for this reason, to keep me from exalting myself, there was given me a thorn in the flesh, a messenger of Satan to torment me–to keep me from exalting myself!” 2 Corinthians 12:7

Above quotes, © 2009-2010 Rest Ministries Chronic Illness Pain Support, All Rights Reserved. Read More at Rest Ministries - Chronic Illness and Pain Support.

Diane Bucknell came to know Jesus Christ as her Lord and Savior at the age of 20. She resides in Carson City, Nevada with her husband Robert. They been married for 36 years and have 3 children and 4 grandchildren. They own Bucknell Arts, a fine art and mural painting business.

His Strength

This Isn't Light!

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."
- 2 Corinthians 4:16-17 (NIV)

I so appreciated Rachel's thoughts on this verse today at (in)Courage. In part she shares:

Light and momentary troubles? There are days when my troubles feel anything but light and momentary! They feel awful and overwhelming. But when I shift my focus from my immediate circumstances to an eternal perspective, I see my troubles for what they truly are: brief. Compared to eternity, this is just a moment. Suffering is only for a time; it will one day end. Heaven will last forever.

Okay, so the troubles of today are brief compared to eternity. I get that. But light? How are these afflictions light? They feel so heavy. My body grows weaker, and apart from a miracle, it will never function normally again. I can’t be the wife and mother for my family that I want to be. This isn’t light; this is huge...

To read more, including her resolution to these questions, please visit Rachel's website, One Day at a Time (living in weakness, resting in grace, waiting in hope), or (in)Courage. :)

Writing with CFS

I am an author. I am living with "Chronic Fatigue Syndrome". When questioned by a doctor last year on my cognitive function, I explained, "I have written one book, but where others could have written it in several months, maybe a year or two, it took me ten." I continually turn down speaking engagements and travel requests because I do not have the stamina for public speaking, nor the strength for travel. Writing is my passion, my therapy, my outlet. But "being a writer" while fighting through this illness isn't an easy road.

In an article called CFS: To Suffering Add Anger, author Llewellyn King writes, "CFS-afflicted authors describe taking years to finish projects that should have taken months. These include Hillary Johnson, whose book “Osler’s Web” is about CFS; Laura Hillenbrand, who wrote the bestseller “Sea Biscuit” while struggling with the disease; and Deborah Waroff, who is writing a book about the Jewish hero Sholom Schwartzbard, but who has found the task dragging on for years, working as she can between severe periods of disability, confined to bed."

Since the above referenced article is one of the only places I've ever seen authors with Chronic Fatigue Syndrome specifically addressed, I just felt it "fit" here on this blog. Thank you for your patience as my own writing efforts slowly grind forward at whatever speed and ability God enables. I would love to see this new book in print by 2015.

Be Still

"What God said to Jesus and to Paul, and what he says to us is, 'My power always comes to perfection through weakness. My power can only explode into your life through your weakness.' Paul says that if Jesus can uncomplainingly submit to his infinite suffering and thereby have God's life explode into our lives and into the world, then you and I can submit to our finite suffering uncomplainingly and know the same thing will happen. That death in us will work life in us and in other around us. That's our hope." (emphasis added)

- from Be Still, My Soul: Embracing God's Purpose and Provision in Suffering, book compiled by Nancy Guthrie, above quote by Tim Keller

20 years

I know for a fact I am positive for an Human Gamma Retrovirus (HGRV). Looking back on my health history, I suspect I have carried this retrovirus for at least 30 years, possibly longer. But it was 20 years ago today when I got "really sick" and went down hard with what was eventually labeled Chronic Fatigue Syndrome (CFS). I would invite you to read my reflections on the past 20 years at http://infertilitymom.blogspot.com/2010/09/and-then-life-changed.html

If you did not see my announcement yesterday, I would also like to invite you to join my new facebook page tied to this blog at http://www.facebook.com/pages/Given-Me-a-Thorn/160505560633099

Now on Facebook

If it is easier for you to follow Facebook than Blogger, I now have a page where these posts will auto-post, along with the benefits of Facebook commenting and interaction. Feel free to join me at http://www.facebook.com/GivenMeaThorn

Blessing of the Thorn

Great sermon outline on why Paul's Thorn was a Blessing! Addresses questions I will also be tackling in my book such as, "what was Paul's thorn?" Satan's hand in suffering v/s God's sovereign will, how God's "no" answers can be better than the "yes" we are seeking, and much more. Worthwhile read:
http://cnview.com/text_sermons/blessing_of_the_thorn.htm

On a totally unrelated blog, I was also reminder today by Lysa TerKeurst what satan is up to when he tries to trip us up with "thorns":

"Do you know why Satan’s tactics are called schemes in 2 Corinthians 2: 10-11? A scheme is a plan, design, or program of action. Satan’s schemes are well thought through plans specifically targeted to do 3 things:
1. To increase your desire for something outside the will of God.
2. To make you think giving in to a weakness is no big deal.
3. To minimize your ability to think through the consequences of falling to this temptation."

Going back to the original sermon posted above, I love this quote:

Who gave Paul the thorn? "There was given to me a thorn in the flesh, the messenger of Satan". Satan gave it to Paul. God allowed him to do so for a real beneficial purpose. " exalted above measure".(lest I should be overcome in pride) There is a mystery between sin, sickness, and Satan. Satan rules but God can overrule the messenger of Satan. (a fallen angel, or demon sent by Satan)

Paul's sufferings were to prevent him from being lifted up with pride. Satan's part is clear, he cannot bring evil to the believer except by God's permission. (see the story of Job- Satan had to have God's permission to inflict him)

Satan was permitted to inflict Paul to serve God's purpose. Satan sure is dumb in ways. He will inflict a saint, all the while DOING GOD'S WILL.

God has a definite purpose in mind for our good in allowing sufferings in the believer's life. Our sufferings may not be due to specific sins we have done, but may be ministers to our benefit.

Character

‎"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."

~ Helen Keller

 Sounds like James 1:2-4 to me:

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." [The Message]

or

"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." [New International Version]

from God not us

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."
2 Corinthians 4:7-9

September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.

There is a Meme “30 Things You May Not Know About My Invisible Illness,” you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. Receive a free 80-page ebook offering 263 tips on living well with chronic pain and illness when you sign up for daily email updates. This ebook was authored by 20 experts and addresses a range of daily life issues, including my own 10 tips on homeschooling with chronic illness.  (If you want the ebook and don't want to commit to ongoing emails, even though they really are great, you can always sign up and unsubscribe after you download the ebook resource.)

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com

Learning to Walk

My friend Ginger Garrett has been dealing with a debilitating ankle injury for over a year now. Here's her story about undergoing surgery for a tendon graft last week. In her typical entertaining manner, she will make you smile even as she addresses a stressful reality. As strange as it may sound, I think "Enjoy!" might be the right invitation to give as I share her link. :)

Gifts of Illness

While not written from a distinctly Christian perspective, it was interesting to me to find another article on the perspective of seeing gifts in our weaknesses.

The Name

I wrote this poem at the beginning of the year. I'm posting it today in honor of the grand opening of the Whittemore Peterson Institute in Reno, Nevada. (Permission to reprint the following poem is granted by the author if reprinted in full, including copyright line, and linking back to this blog at http://www.GivenMeaThorn.blogspot.com  If you are not familiar with my journey though "Chronic Fatigue Syndrome," or XMRV- Associated Neuro-Immune Disease, you may want to start here.)

What's In a Name?

Head pounding

Throat burning

Pain radiates up

Into my teeth, into my ears

I'm hot

Wait, I'm freezing

Sweats and fevers

Come and go

Snuggled down in bed

In my softest jammies

Hoping for relief in slumber

Elusive sleep refuses to come

Thoughts wear me down by racing at manic speed

Of an unstoppable bullet train

Or are as muddied as trying to gain a clear view of sea life

While snorkeling in pea soup

The weight of my pajamas brings pain

Agony from every point of contact with the bed

Cozy blankets feel like sandpaper against my skin

Invisible icepicks stab randomly at my body

Where there's no pain

Tingling or numbness instead

Muscles randomly twitch and jump

Sudden weakness and I loose grasp of what I hold

The room whirls

I'm dizzy even lying flat

When I walk haltingly down the hall

I feel for the wall to keep my balance

At least I don't have hives tonight

Something to be thankful for in this moment

They come and go, here nearly as often as not

I'm glad they have not chosen to visit right now

How can I feel ravenously hungry

And nauseous all at the same time?

The thought of food turns my stomach

Yet I crave something to eat, just don't know what

My limbs feel like lead

The weight packing onto my body

Because I cannot tolerate the simplest of exercise

Only compounds my frustration

Movement saps limited reserves

I try to lie still; it works for a moment

Before waves of pain tip the scale

I writhe to keep from crying out

Every breath an effort

Not “pain” exactly, a distinct heaviness

Exhausting to push chest in and out

Would be easier not to inhale

Depressed? Want to die?

No!

Just putting my reality down on paper

Rather than wearing my loved ones out with my complaints

My nemesis has been given many titles:

The belittling “Yuppy Flu”

A pathetically nondescript “Chronic Fatigue Syndrome”

The slightly more accurate mantle of “Chronic Fatigue Immune Dysfunction Syndrome”

And after nearly 20 years of this living nightmare

Finally a name that gives credence to the seriousness of my condition

XAND – Xenotropic murine leukemia virus-related virus Associated Neuro-immune Disease*

Who would have thought I would find affirmation

Even relief, in testing positive for a life-altering retrovirus?

It's the validation that brings me gladness

I've been sick all along...

And now IT has a real name

*Since the original writing of this poem, HGRAD, standing for Human Gamma Retrovirus (HGRV) Associated Disease, seems to be the more scientifically correct name, replacing "XAND" as "XMRV" was not originally well named from a technical standpoint, being a clearly human virus, rather than murine (mouse) in nature.

© Copyright, Jennifer Saake, 2010

Dedicated to the researchers at the Whittemore Peterson Institute

Update, February 2011:
This poem has placed in the top 20 in a worldwide poetry contest at InvisibleDisesases.com.

Being Made Perfect

Remember a couple posts back where I talked about theme words God seems to work in my life?  Perhaps I posted a bit prematurely for God seems to be moving me into yet another new season. Or perhaps I didn't post "too soon," but rather this update simply acknowledges God's continual working in our lives.

On my InfertilityMom blog I recently admitted my perfectionistic tendencies. Since then I have been slowly, imperfectly (as in not every day, not consistently, not to my exacting expectations of what good Christian "quiet time" or "devotional" time should look like - gasp) working my way through Biblical references to the word "perfect". There have been days where I've humbled and challenged by the process, and times when this study has been quite liberating.

Amazingly, I've been excited and surprised to see how closely my word study on "perfect" falls hand-in-hand with all I'm learning as I work on writing this book on the life of Paul. I never would have imagined that one study would have anything to do with the other when I started battling perfectionism less than two months ago, but it's been great to see all Paul had to say about perfection.  Today, as I was tweaking some things in my book introduction, I was stunned to realize that a key verse I had chosen months ago for the opening section of the book is one that falls right into my study on perfectionism:

“Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me.”
- Philippians 3:12 (NIV)

I love it when God so beautifully orchestrates and intertwines so many different aspects of my life, all to teach me more about Himself and His loving, personal grace toward me. I'm so looking forward to sharing more about God's views on perfection as I unfold Paul's story for you through the book!

Wholeness

Rest Ministries posted a great little article today about God's Healing and how it can sometimes look different than we anticipate, but is always God's best for our lives.

I also shared a vulnerable post today on one of my other blogs, about my own quest to physical and spiritual wholeness in my battle to make wiser food choices as an act of spiritual discipline. Do you share similar struggles? Would love to hear from you on this issue.

Theme Words

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 the last couple of years adding the active pursuit of Joy to my life as well. Here are some of my favorite resources from these three themes:

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

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

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

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

Hope in the Shadows

Nearly a year ago I was blessed to share a guest post on the (In)Courage blog. I'm re-posting it here today:

"Wait on the Lord, be of good courage and Wait….”
How many times has this refrain whispered in our ears over the past 19 years?

We Waited through a two-year engagement before experiencing the joy of marriage.  A decade of infertility followed as we endured 10 losses to miscarriage and unsuccessful adoption attempts.  Then came the bitter surprise of post-partum depression.

Entering our 20th year of living with chronic illness, we’re still Waiting and looking for answers to my daily pain and ongoing loss of abilities.

Have you ever heard someone describe a time of trial as, “living under the shadow of [xyz]”?  Plug in some “xyz”s of your own here; 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.  God paints shadows in a positive light many times through His Word. 

The Psalms sing repeatedly of "taking refuge under the shadow of His wing," or “resting in the shadow of the Almighty.”

Hebrews describes the best of this life (the Lord’s Sanctuary and the Law) as a foretaste, a copy, a shadow of what is to come in Heaven.  To God, shadows offer protection and glimmer with Hope.

It took our 2-year-old to really illustrate this point to me:
“Where my shadow go, Mommy?”
“Your shadow is sleeping, Sweetheart.  It’s dark because it’s nighttime, but we just need to get you to the potty now.  You did a great job waking up to keep your pants dry, so let’s get there quick!”
As we reached the restroom I flipped on the light.
“There my shadow are now Mommy!  Thank you Mommy!!!”
He danced a happy jig (almost having an “accident” in the process), all signs of sleepiness erased from his glowing face.

Long after our sweet son was soundly sleeping once again, I lay awake reflecting on the pure joy he found in shadows. While I tried to escapee shadows, he saw them as treasures.

I asked the Lord for strength to see my troubles through more childlike eyes that could delight in, and even thank Him for, the imprints they cast over my life.  It was then that I realized that shadows are merely evidenced by light.

What Hope!  The more deeply I feel the weight of a shadow fall across my path, the more powerful the source of Light that contrasts with that shadow.

I too often fixate on darkness rather than finding courage to stand in shadows because of the Light flooding around me.  Being “helpless” to change my circumstances does not need to equal “hopeless” despair.

Hope can thrive in shadows because of the steady, unshakeable, unmoving Hand of Grace holding me in the light of His love.  When trials threaten to overshadow me, I can rest in the refuge of the shadow of His wing.

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)

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)

Disabilities

Today marks the 20th anniversary of the signing of the Americans with Disabilities Act (ADA) into law.  There's a great op ed article for CNN written by Joni Eareckson Tada today, linked along with a few specific prayer requests at Joni and Friends:
http://www.joniandfriends.org/blog/monday-july-26th-update-joni/

Why Some Trials Never End

I don't personally know this author or really anything about this website, but I stumbled upon a link today and felt many of the points to be basic, direct and valid in relationship to 2 Corinthians 12:
Why Some Trials Never End

What are your thoughts?

I Can't Take It!

I was thrilled to come across the blog of one of our most beloved college professors today, Dewey Bertolini. Can you guess the topic of the most recent post on his blog? To my delight, it was Paul! Specifically Paul's writing to the church of Corinth. Check out his link and be encourage:
Just when I think I can't take it...

Given A Thorn

This article was originally posted to my Hope Harvesters blog in May, 2009. Here is a slightly updated version:

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

I love gardening, but I usually find myself starting to loose the battle against weeds by early May, and by July my garden is overrun simply because I don't have the energy or stamina to get out there and fight them, especially as temperatures climb and I wilt, just like my unwatered flowers, in the heat.

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

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

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

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

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

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

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

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

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

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

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

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

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

- NIV

I don’t know all the reasons why God has allowed my “thorn in the flesh.” Is it to keep me from becoming conceited? I really don't know, but there there is no question that illness has certainly humbled me and helped me to realize that God is God and I am not!
Is it a “messenger of satan” intended to torment me? Only God knows for sure why He allows any kinds of trials in my life, but I am comforted by the book of Job to see that if satan has been allowed to bring any pain into my life, that his influence must be filtered and tempered through Heaven first. He can only touch me as far as God allows and his powers are limited by God's strict parameters. Like Job, I can only see a terribly small sliver of what is actually happening in our world as influenced by the spiritual realms, but I do know that God is the one ultimately in control!

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

James chapter 1 says,

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

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

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

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

P.S. I added photos to this post from my summer, 2011 garden. You can see both my battles with weeds and thorns and my eventual (though admittedly short-lived) victory illustrated by beautiful blossoms. I pray that I will always bloom right where God plants me, even if it means blooming in the midst of thorns.

Storms

Making Progress

I had a delightfully "unplugged" weekend away with my family at my in-law's cabin in the woods. I slept a LOT, read, rested and refreshed. Yesterday I had a few quiet hours to think and pray and words started flowing. I grabbed a pencil and notepad and wrote about half a chapter for the new book. Writing can be physically and mentally draining for me, but when it flows like that, it's so emotionally recharging. I'm feeling so excited about unfolding Paul's life with you all! Thank you to everyone who is praying me through this process. :)

Handmade Medical Alert Give-Away

A Facebook friend, Melanie, is giving away one handmade piece of jewelry, taking entries for the next week, until noon on June 28th. The reason I wanted to spotlight her give-away here is because she includes beautiful medical alert bracelets in her creations! No one really wants to wear a sterile-looking alert bracelet, but Melanie has actually found a way to make them pretty. Drop by her blog and tell her Jenni sent you when you enter to win your own. (If you or a loved one does not need the medical alert style, Melanie offers many other lovely pieces as well!)

 Wondering why your journey through pain is important to me? Here's my story.

Wasting Time

Living with chronic illness often seems like life wasted. As my sweet friend Debbie friend just told me this past weekend, "I keep telling God I could do so much for Him if I was healthier."

In my inbox this morning was this great reminder from Holley Gerth contemplating Christ's life as a carpenter until formal ministry began at age 30, reminding me that God calls me to faithfulness in ever season. God has purpose in extended seasons of waiting and "being still" even if it feels like I should be "doing something" different. May His purpose be fulfilled in my life, be it in bed or where ever else He may call and equip me.

This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen.

- from The Book of Common Prayer

"For we are God's workmanship created in Christ Jesus to do good works, which God prepared in advance for us to do."
- Ephesians 2:10

Thorny Gifts

I've been thinking lately about unlikely gifts. Paul was given a thorn. I'm still trying to wrap my mind and heart around just what that means, but this article on Gifts, misunderstood, though written to challenge me to wisely give my heart to sharing with others, does get me thinking about God's choices for me...

If God is the Giver of "every good and perfect gift" (James 1:17) why does He allow thorns? In the above-linked blog, Seth Godin proposes, "The way I understand gifts is that the giver must make a sacrifice, create an uneven exchange, bring himself closer to the recipient, create change and do it all with the right spirit." If measured by sacrifice, there is no doubt that God is the greatest Giver, even when I don't always understand or appreciate the gifts He prepares for me.

I'm still thinking, sifting, sorting, praying. What are your thoughts on the gift of thorns?

Thorn of Infertility

This praise/prayer request actually pertains to my first book. Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss has been nominated by RESOLVE, the oldest, and one of the largest, infertility support networks in the nation, as one of the top four "best" infertility books for 2010! I'm beyond thrilled by this nomination and am praying that if nothing else comes of it, at least many new readers will be exposed to the book and God will encourage some hurting hearts as a result. (But I can't say my feelings would be hurt if I won the "best" award either. ;) )

RESOLVE's selections are now open for public vote and I would so appreciate if if you would take a moment and visit www.resolve.org/vote to cast a vote for Hannah's Hope in the "best book" category. Thank you so very much!!! If you have a blog or a facebook/twitter type account and would be willing to pass this along to your friends as well, I would truly appreciate your assistance! Voting closes June 24.

Devotion from In Touch

A dear friend sent me a link to this devotion written for In Touch Ministries last month. It captures much of the heart of what I hope to accomplish with my Paul book:
Thorn in the Flesh: When God Doesn't Take Away the Pain by F. L. Stone
A couple of quotes that stood out to me:

The point was God’s answer to Paul’s plea for deliverance: “My grace is sufficient for you, for my power is made perfect in weakness” (v. 9). This mysterious proclamation of hope speaks of pain in the strange way that’s confounded humanity from the ancient times of Job to the present: the idea that not only can the most inexplicable pain have value, but that the very presence of God can actually come to inhabit suffering and make it into something altogether different.

And further down in the article...

[God's epic response] was speaking to those of us who have done everything we possibly can to deal with chronic depression and yet continue to have no mental energy for anything, no matter how well things are going. Or those of us trapped inside our bodies or minds by some disability that keeps us from interacting the way we want to with the rest of the world. Or even those of us who have tried again and again but can’t get pregnant or stay pregnant when that’s the one thing we’ve always wanted—or those of us who just desperately long for our family to stay intact but know it isn’t within our control.

Prayer Team

I am currently building a prayer team to be my backbone of support as I continue moving forward with the writing of my book on the life of Paul as a support resource for living with chronic pain/illness. If you are passionate about these topics and committed to prayer, please send me an email at jsaake AT yahoo DOT com with PRAYER TEAM in the title, telling me your story or why you would like to be part of my prayer team in one or two paragraphs. I am being fairly selective in the handful of people I invite to join the blog where I am vulnerably sharing the ups and downs of my writing journey, so I may need some time to get to know you before I send you an invitation to my team. Thank you for considering partnering with me in prayer!

Hannah's Hope took me nearly 10 years to write, from first dreams and prayers and scribblings to completed manuscript. I'm sicker now and have more kids, but I also have the experience of one prior book, so only God knows the time line He will unfold with this new book. Since Hannah's Hope has been published for 5 years already, I guess you could say we are 5 years into this new book (though I only just put an outline to paper earlier this year) and currently it seems pretty realistic that I could well be another 5 years from submittable manuscript. I'm intentionally not yet seeking a publisher because I want the freedom to write at the pace God places things on my heart, not be scrambling to meet publisher deadlines.

Vote for me as a Health Hero?

I was blessed to be nominated as a Woman's Health Hero and I need your help! (Head's up to my friends who are sensitive to mentions of pregnancy, the sponsors of this award do promote pregnancy-related books on their website, so please be for-warned before following this link.) Out of all entries, just 20 names will be inducted into a Health Hall of Fame. Two Hall-of-Fame selections will receive special honors as either Staff Pick or Audience Choice award determined by the public (that's you!).



You will be allowed to vote on all entries between now and May 14 (extended one week from the prior May 7 deadline), 2010. The entry that receives the highest overall ranking will win the Audience Choice award. Last year's Audience Choice winner was my dear friend Lisa Copen from Rest Ministries. I would be delighted to add a similar honor to my "resume" as I continue working on writing my book on the life of Paul as encouragement for living with chronic pain/illness.

Will you please help me by heading to www.ourbodiesourblog.org/blog/2010/05/comforting-those-with-fertility-challenges-jenni-saake and selecting the "thumbs up" voting button at the bottom of my profile? Thank you so much! :)