Given Me A Thorn

My Next Book

2011-10-08T14:59:00.000-07:00

I'm often asked when I'm going to write my next book. In reality I've been in the process of writing a book on the life of Paul as encouragement for living with chronic pain and illness (the reason for this blog) for probably close to 5 years now. Since Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss took me about 10 years to write, that may not be such exciting news because it tells you I still have a very long way to go!

What I hope is more exciting, what I would like to ask you to partner with me in prayer about as God continues to unfold His plan, is that two of my other blogs, one on beauty and (now that I've gained more focus for what I want to do with this project) specifically Harvesting Hope from Heartache™, have becoming a launching pads for what I feel God is turning into my "next" book.

Yes, I'm continuing to work on the Given Me a Thorn too, but over the past year God has me focusing more on an exploration of the Fruit of the Spirit (a passage written by none other than Paul himself) through a series of articles I've been writing for Glory and Strength and my InnerBeautyGirlz blog. I've been working on a Bible study related to what He's teaching me and I've written much more than could be presented only in my articles, so I think God's growing a book out of all of this! :)

How does the Fruit of the Spirit tie in with Harvesting Hope from Heartache? I'm glad you asked. ;) It all has to do with sowing seeds, gathering fruit, and ultimately what Source my hope springs from. What better time to look to the Lord for help than in the midst of trials? I'm very excited to see how God is tying so many themes together in my life as He's teaching me through Galatians 5 this year! I pray that this book will be as much of a blessing to you as the journey has been to me.

It is my current goal to have enough of this study written and ready to present to publishers that I can begin the query process around the end of the year or in the very early part of 2012. Will you join me in specific prayer that God will give me His words to write and that this project will unfold according to His will and in His perfect timing?

If you would like to stay updated about my progress, I've just opened a new Facebook page at http://www.facebook.com/HarvestingHope and would love to have you "like" me over there. :) If you don't do Facebook or would rather get updates via feeds, please follow my long-standing Harvesting Hope from Heartache blog directly. Feel free to pass these link along to your friends as well.

Focus

2011-09-13T14:42:00.000-07:00

I almost tossed this picture. The rose is all out of focus! In fact, the only thing my eye can clearly make out is the background, and look at all those nasty thorns!

Oh wait. Isn't this a perfect picture of my life sometimes? So often I miss out on the amazing beauty and blessings right before me because I'm focusing on the annoying, the irritating, the ugly, the painful.

Lord, please help me to remember that even when you give thorns, they are always accompanied by gifts of grace. Sometimes I may have to work harder to adjust my focus than other times, but when I look for your blessings, they are always there.

I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it's all you need.
My strength comes into its own in your weakness.

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.
- 2 Corinthians 12:7b-10 (The Message)

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Thank you to my sweet friend Abby of Mavora Art and Design who took this idea and made it into my beautiful new header! Feel free to visit her website or follow her on Facebook.

National Invisible Chronic Illness Week

2011-09-12T06:34:00.000-07:00

Welcome to National Invisible Chronic Illness Week (Invisible Illness Week, or IIW for short)! Please join me in watching this video produced by my dear friend, Lisa Copen, founder of both Rest Ministries and IIW.

How will you observe IIW? What can you do to spread awareness, comfort, or simply snuggle into the resources and reality or hope and support extended to you?

Myalgic Encephalomyelitis: International Consensus Criteria

2011-08-08T11:26:00.000-07:00

Could "Chronic Fatigue Syndrome" finally be loosing its ambiguous "fatigue" label? We can only hope that this is a step in the right direction!

Myalgic Encephalomyelitis: International Consensus Criteria - Carruthers - Journal of Internal Medicine - Wiley Online Library

Being Whole

2011-08-05T16:08:00.000-07:00

I am in pain, sick, frail, homebound, bedbound, without great possibility or potential in my future.

In all of that, I am whole. I am complete. I am exactly what God made me to be in the exact time He created me to be it...

To read more reflections on what it means to be "whole" and how we can get there even in the midst of illness (not to mention validation for putting up with all those who tell us that wholeness will come through their sure cures), visit Gitz today and read about Whole.

Fibromyalgia

2011-07-24T18:22:00.000-07:00

I try not to post identical (or even highly similar) content to two or more of my blogs, but since today's post over at InfertilityMom is more health-related than not, I thought my readers here at GivenMeaThorn might appreciate it as well. For the few of you who happen to subscribe to both, thank you for your patient indulgence in my cross-posting. :)

While it's my personal blog rather than my primary health blog, I am honored to learn today that InfertilityMom has been selected as #22 in the top 100 blogs at 100 Best Sites for Fibromyalgia or Chronic Fatigue Syndrome Information. Thank you! :)

My mom's just completed her 2nd week at week at FibroInnovations. She's sore from all the work they are doing on her, but the results have already been more than we had dared to hope, and she still has another 10 weeks of on site treatment to go before several months of at-home follow-up. After basically falling into this treatment in a way that can only be described as Providential, it truly seems that it is an answer to our prayers for her after over 20 years of pain! Here she is with Dr. Kingston. I will admit that our family was highly skeptical about this program in the beginning, after too many years of "sure cures," but hearing the hope in her voice now makes me feel like this really is going to be a life-altering change for the positive for her.

Speaking of hope and life-altering changes, will you help me keep fighting for change by using your facebook account to join me in daily voting for the Whittemore Peterson Institute? If they can hold onto their current #1 spot in the Pacific region through August 27, they will win $100,000 of desperately needed research funding. If we could move them up from their current 6th place (contest-wide) into first there as well, they would be awarded $250,000. Voting will only take moments from your day and every vote counts! You can learn more about the importance of the Whittemore Peterson Institute in my life by reading back through my many posts on XMRV.

Easy Activism

2011-05-21T22:22:00.000-07:00

Did you know that 30 seconds of your time could make a $500,000 difference?

If you have a Facebook account (or know someone who does, or you are considering getting one), please keep reading! If you followed this blog very long at all, you've heard me mention the Whittemore Peterson Institute many times. I am so very thankful for this research organization and the hope they bring to not only me personally, but to millions with M.E., CFS, Fibromyalgia, Lyme disease, Gulf War Illness, a-typical MS, Autism, and more.

The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below through May 25th at 9 pm PST. (Just under 4 days left!)

STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving: http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button.

5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.

CHASE COMMUNITY GIVING: BIG IDEA

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program.

Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide on site care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these under-served populations.

http://www.wpinstitute.org/help/index.html#chasegiving

Homeschooling Chronically Ill Children

2011-05-17T16:44:00.000-07:00

I have written a lengthy resource for homeschooling with chronic illness (from the parent's perspective) on one of my other blogs. Today I wanted to share a quick article about Homeschooling a Chronically Ill Child and your legal defense rights.

Explaining Fibromyalgia

2011-05-10T10:31:00.000-07:00

I just read a great explanation of Fibromyalgia over on the Faith, Family and Fibromyalgia blog. If you have Fibro, the illustrations will resound with you and possibly give you a simple word picture to use to help explain yourself to others. If you don't have Fibro, this story may give you more understanding for your friend or loved one who does. You'll want to read the whole article in detail, but here's a taste:

Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.
That’s what’s happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain. When those pain signals reach the brain, they’re processed by something called serotonin. People with fibromyalgia, however, don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the brain turns into actual pain. Other substances in the patient’s brain amplify a host of other signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can further overload the brain...

Just two more days until Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. The Whittemore Peterson Institute (WPI) is building an international network of Advocates who are dedicated to finding a cure for neuro-immune diseases (NID). Learn about May Awareness at ANIDA.

Burden Bearers

2011-05-02T15:34:00.000-07:00

Who are your Burden Bearers? The ones who truly understand you? Who walk beside you? Who either "get" you at a heart level, or at least honestly admit that they can't but try to listen with compassion anyway?

Do you have someone like that in your life? I hope so! I know not everyone does. :( If you don't, please share how I can be praying for and with you!

I've been blessed with some wonderful Burden Bearers in my life. Not always. And not at every painful season I've ever walked. But on the grand scale I've been blessed non-the-less, probably more than most.

Even when others where there, trying to care, they did not always do so perfectly, sometimes unintentionally hurting me along the way. As one friend described it, "It's like two porcupines trying to give one another a hug." Sometimes we hurt those we most love, through the very acts we offer out of desire to comfort.

Today I want to take a moment and stop to say thank you to one very precious Burden Bearer I am blessed to also call, "Mom." I was thrilled to learn today that an essay I wrote about the way she has walked with me through Fibromyalgia and Chronic Fatigue Syndrome has been selected as one of the top five finalists in the very first "Fibromyalgia Mom of the Year" contest!

Would you please take a moment to read about Betty Camp, my amazing mom, at the National Fibromyalgia and Chronic Pain Association? And if you are willing to take just a couple moments more, I would greatly appreciate if you would register for a username (you will be required to supply an email address, but can uncheck any auto-subscriptions for email) and then give Mom's story a 5-star rating! The grand prize winner will be determined by public vote between now and May 9, with the final decision announced on May 12, 2011, national Fibromyalgia and CFIDS Awarness Day.

Illness and Infertility

2011-04-28T14:25:00.000-07:00

Some of you may know that we battled for 13 years to bring home our three living miracles, with infertility, multiple miscarriages and adoption losses along the way. Since I have lived with ME/CFS/XMRV my entire adult life, the issues of chronic illness and infertility were often intertwined with each issue complicating the other on multiple levels, physically, medically, emotionally, spiritually, and just about any other "ally" you can imagine.

Lisa Copen, my dear friend and founder of Rest Ministries, offers some beautiful thoughts on living with chronic illness and facing infertility:
How Do I Know if God Has Motherhood In My Future?

If you find yourself a journey through fertility challenges, you can find additional support on my Hannah's Hope blog and also at the new faith-based blogging community, Held!

Secret of Contentment

2011-04-25T03:45:00.000-07:00

A guest post by Rachel:

The Secret of Contentment

I have read Philippians 4 many times in my life. I've always read it and wondered about the apostle Paul's secret to contentment. This week I read this chapter again and saw things in a way I never have before.

Paul's secret is actually quite provocative – the secret of living with contentment in every situation. Few of us ever scratch the surface of what contentment truly means, no matter how great our effort and intention.

How I praise the Lord that you are concerned about me again. I know you have always been concerned for me, but you didn’t have the chance to help me. Not that I was ever in need, for I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything through Christ, who gives me strength.

~ Philippians 4:10-13

I will confess – I don’t know how Paul could live in contentment with all he had been through! I read his words and think, that can’t be right, he was in prison! And surely I don’t need to learn to be content in this [insert your trial here] situation? Paul can’t possibly mean that. Oh, but he does.

Did you notice the verse at the end of the passage? On the heels of saying that he is content in any and every situation, Paul says, “For I can do everything through Christ, who gives me strength.” I think this verse is often used too flippantly. Paul isn’t talking about achieving anything he sets his mind to. He is referring to surviving the worst of the worst with as much grace as living with plenty. Whoa.

My question for Paul has always been, “Well then, what is the secret to achieving contentment?” What I found this week is that he addresses this very question earlier in chapter four.

Always be full of joy in the Lord. I say it again – rejoice! Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. Keep putting into practice all you learned and received from me – everything you heard from me and saw me doing. Then the God of peace will be with you.

~ Philippians 4:4-9

Let me break that down for my own sake (because I’m a list person):
• Be full of joy
• Be considerate in all you do
• Don’t worry; pray
• Be thankful
• Fix your thoughts on what is true, honorable, right, pure, lovely, admirable, excellent, and worthy of praise
• Put into practice the things you have learned

If we do these things, Paul says, “The God of peace will be with you.” All these things lead to peace, and peace leads to contentment. This is revolutionary stuff! With achievable, albeit difficult, action steps. Paul's secret steps to God's peace and contentment.

Well, I need to be more like Paul. What about you?

Like what your read here? Rachel's written more on this subject! Check out Contentment: On Failure and Hope to read "part two." :)

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About our Guest Author:

Rachel and her husband live in Maryland, home of the world's finest crab cakes. Her heart for women facing the struggle of infertility has led to an active, encouraging role on Hannah's Prayer Community Forums and as a team member of HELD. When she isn't laughing with her husband, Rachel can be found cooking, blogging, and hanging with girlfriends.

Easter Encouragement

2011-04-24T07:29:00.001-07:00

Blessed be the God and Father of our Lord Jesus Christ,
who according to His great mercy has caused us to be born again
to a living hope through the resurrection of Jesus Christ from the dead.......
In this you greatly rejoice, even though now for a little while, if necessary,
you have been distressed by various trials...
1 Peter 1:3,6

He is Risen!!!

When God Says No

2011-04-21T01:44:00.000-07:00

Why would God say "no" to a good request? To a request like Paul's for the removal of his thorn? For our requests for healing?

This week Lysa TerKeurst said, "When God says no, we are sometimes tempted to wonder if He loves us. In reality, it’s because He loves us, He sometimes says no."

To illustrate this she gave a beautiful word picture of how a cake may look done 2/3 of the way through allotted baking time, but if it's pulled from the oven too soon, it collapses. She writes, "The cake couldn’t withstand the pressure of an undone center… and neither can we.
"If we obsess over the cake and make it our whole focus, character atrophies. If we make growing in godliness our obsession and keep our focus on God, our character matures. And a mature character makes for a solid and well done center."

The rest of Lysa's post can be found here: Escaping the Rut of Want

I've said over and over that I believe pain is a gift, though certainly an odd one. The thing that makes it a gift is the way it drives us to dependence on God. If I'm fixated only on my illness, or my desire to be well, I miss out on God's best for me right here, right now, right in the heart of living these trials.

Chronic Grace

2011-04-18T03:07:00.000-07:00

A guest post by David J. Hall.

The Chronic Grace of God

I have found the Scriptures to be absolutely true when the Lord told the Apostle Paul (who was being tormented by a "thorn in the flesh") that God's grace would be sufficient for his journey of suffering and pain.

While I suffer with chronic pain (and sometimes outright agony), I am at the same time blessed by God's chronic grace (if I may phrase it that way) which is more real to me than even the pain. In a sense, the pain is almost surreal, but God's grace is so real, and is provided through His tangible Presence!

His grace does not take my pain away. His grace does however equip me physically, emotionally, psychologically, and spiritually to endure the pain, and to do so with a heart that is filled with joy and is established in peace... His peace!

If you suffer with a chronic pain condition of some kind, first pray for healing, and then pray for the "chronic" grace of God to sustain you until His healing arrives in your life.

See you at the altar, my friend, where we together will approach our gracious Heavenly Father Who will provide all that we need!!

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
- Hebrews 4:16 (NIV)

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About our Guest Author:

David J. Hall battles Fibromyalgia with Chronic Fatigue Syndrome, diagnosed in 2000 after many tests ruled out other things. "I have been a pastor my whole adult life, and could no longer work as of Sept. 2006 due to my illness.
"My mom and dad say that my pulpit is now my bed, from which I write notes on Facebook (please request a friendship if you would like) and articles on my blog."

Beautiful Bruises

2011-04-14T22:36:00.000-07:00

I've been pondering this post all day. In part the author (also named Jennifer, but not me) says, "The colors in a refreshing sunset are the same as my bruise. Maybe, just maybe, God sees the same beauty in both. Maybe God wishes we would stop shying away from our bruises and instead, sit back, take a breath and observe. Maybe if we stopped trying to hide the bruises, we would see what God sees..."

What are your thoughts? How have you found beauty in painful circumstances?

Weakness in Strength

2011-04-11T15:00:00.000-07:00

This blog is about finding strength in the midst of weakness, but I love Lysa TerKeurst's thoughts today about how, "We are only as weak as our strongest link." Yup, if that statement make you scratch your head, you probably read it right. If it didn't make you do a double take, read it again! Here's more from Lisa about recognizing the weaknesses of our strengths.

While we are thinking about weakness and strength, this great reminder from Tricia Goyer on a recent homeschooling interview sure caught my attention. "Don't compare. We always compare our weaknesses to other people's strengths!" I can apply this to my life in so many areas and love the reminder that God has a unique plan for my life. Strengths, weaknesses and all, this is the life God has given to me and to me alone. I don't need to measure up to anyone else's standards because I'm not called to live anyone else's life.

$5 book coupon

2011-04-04T11:34:00.000-07:00

Rest Ministries is a favorite organization of mine! I'm thrilled to announce that they are re-opening their bookstore full of wonderful resources to keep our eyes on Jesus in the midst of pain. To celebrate, here's a $5 off $25 coupon code to use in their store until April 10, 2011. At checkout, use code:
ap5off25

More information about the RM bookstore can be found here. Please come back and tell me what great finds you chose with your discount! :)

Paws for Comfort

2011-03-28T19:59:00.000-07:00

Did you there are tiny, precious "service dogs" trained just for helping out folks with chronic pain? Their gift is heat as they lay across shoulders or other areas of pain for their beloved owners, sharing body heat as a living "heating pad." An organization called Paws for Comfort® "is particularly dedicated to increasing public awareness of under recognized populations of people coping with chronic illnesses, especially invisible conditions, such as Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome."

Xoloitzcuintli (a rare breed also known as the "Mexican Hairless") can be specifically raised to assist in chronic pain relief. They are tiny so as not to add to pain with too much weight. They are also hairless, a wonderful benefit for those with allergies! Check out Paws for Comfort® to learn more. :)

Faces

2011-03-19T10:40:00.000-07:00

"You don't look sick."

"You look so good today! You must be feeling better."

How do I reply? Do I say, "Thank you!" and leave it at that, knowing someone is trying to encourage me?
Do I reply with the more honest, "Thank you for the compliment, but no, I'm really not feeling well at all." or "I wish I felt as good as I look then!"

One of the drawbacks of an "invisible illness" is that looks can be deceiving. As God told Samuel in l Samuel 16:7, "The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart.” What you can see isn't always reality.

Most people see the "face" of a healthy-looking me, the vast majority of the time. They cannot see that I live with a ticking time-bomb called XMRV that can land me hard down in bed with the smallest provocation, or sometimes for no apparent reason at all. They can't see that I'm one step away from walking past a balloon and landing in the hospital for a latex allergy like I did this week. They can't see that I struggle every day to get out of bed and try to lead as normal of a life as possible, despite immobilizing fatigue and every-changing levels and kinds and cycles of pain or cognitive dysfunction and a variety of other symptoms ranging from the annoying or distracting to the downright unmanageable.

So today I though I would show you two different faces of me, the one most people see, and the one that better reflects how I typically feel, the one you usually don't see because when I get to the point where my inward struggles manifest themselves so outwardly, I'm buried away inside the protective bubble of my own home (or in this case, the hospital). Here I am, sick in both pictures, but you would only know if from one.

Thorny Situation

2011-03-16T10:56:00.000-07:00

Dr. Judy Mikovitz has been an incredible advocate for CFS patients even as she dedicates her life to life to research on our behalf. Here's an in-depth article showing many facets of the political debate surrounding her work in XMRV research. I continue to uphold her in prayer, that God will bring truth to light, and invite you to do the same.

When Judy Mikovits found links between chronic fatigue syndrome and a virus, the world took notice. Now, she's caught between the patients who believe her work and the researchers who don't.
- Virology: Fighting for a Cause

Laura Story - "Blessings"

2011-03-04T11:05:00.000-08:00

Lear more at Harvesting Hope from Heartache™.

God's Comfort Zone

2011-02-28T12:20:00.000-08:00

I follow a ton of blogs. One hauntingly beautiful one is called A Holy Experience, by Ann Voskamp, New York Times best selling author of One Thousand Gifts: A Dare to Live Fully Right Where You Are. I have yet to read this book for myself, but today's post leapt off the screen and right into my hear. Yet again, God reminds me about His gifts in the midst of pain:

“When God moves us out of our comfort zone —- into places that are way bigger than us, places that are difficult, hard, painful —- even hurt — this is a gift. We are being given a gift. These hard places give us the gift of intimately knowing God in ways that would never be possible in our comfort zones.”

And further down the post...

"When God moves us out of our comfort zone…

"When God…

"We’re in the God zone when we’re out of our comfort zone and the Holy Spirit, our Comforter, comforts us when we step outside our comfort zone. It’s only in the uncomfortable places that we can experience the tenderness of the Comforter."

Spinal Fluid

2011-02-23T20:44:00.000-08:00

Spinal fluid now also points to ME/CFS as a "real disease". It's so encouraging to watch science continue to validate what those of us who have lived it have known all along!CBS news

Since there was a big news splash last week basically telling patients that we could "exercise our way to health," a dangerous notion that could lead to significant relapse as most of us have personally experienced, the CBS report was a breath of fresh air. To read more on last week's reports, check out Advocates Hit Back on Graded Exercise for ME/CFS. Dr. Paul Cheney, MD, PhD, states that the idea that patients can ‘exercise their way to health with this illness is foolishness... insanity."

Chronic Lifestyle

2011-02-17T11:41:00.000-08:00

I would truly love you feedback on how illness has impacted the big picture of your life, be it not marring or having kids, a change in educational or career goals, a new direction you never thought you would take (but maybe find you love more than you expected), or anything you would like me to consider about big life decisions or lifestyle choices that are changed by your health. Please share your joys, frustrations, victories, struggles, eye-opening realizations, heartaches and achievements. I truly want to know! You input may help shape the direction of my book and is highly appreciated.

How has your illness impacted the decisions you make concerning daily life? Do you find yourself making choices that surprise you or surprise others in spite of, or sometimes specifically because off, your health needs? I'm curious to know where you "push" yourself, what dreams you let go of because of your body's demands, what things you do anyway, but maybe differently? How is your life impacted so that it differs from what you pictured before illness? In what areas have you been able to thankfully maintain normalcy? In what ways are any differences actually a blessing and in what ways are they are disappointments or sources of discouragement?

I've been thinking about all of this since recently posting resources and recording a radio interview about our family's choice to homeschool (sometimes "bedschool") while living with XMRV. For us, homeschooling is a path we probably would have taken anyway, but the challenges and blessings are both multiplied by the realities of my body's daily unpredictability. I am eager to hear about your daily life and how your health impacts you, both positively and negatively, in both daily and overall lifestyle decisions.

My Valentines Day Gift... of Pain?

2011-02-11T01:47:00.000-08:00

This beautiful story was first published on the website of Rest Ministries: Chronic Illness Ministry and is reprinted here with permission of the author, Dana Kennedy. I love the way it captures the concept of the "gift" of pain! (c) Copyright, Dana Kennedy, 2011

In a holy whisper, compassionate eyes searching my soul, He hands me a gift.

“I love you, my child. As the cross is a symbol of my love, so is this gift. It’s not what you desire, but it will bring you more than you ever asked or imagined. Remember, all my gifts are good.”

Tears course off His face as He leans down to kiss my forehead.

As I carefully open the gift avoiding the thorns twisted into a bow, the blood red paper drops to the ground. I lift off the lid and peer into the tiny box. Before my mind can comprehend that it is empty, I am brought to my knees. Pain, fatigue, and weakness crash through my body pulling me under. Instantaneously, I am stricken with illness.

“Oh, God! What have you given me?” I scream in anguish.

“There, there, my child. Be still and know that I am God.”

He gathers me to His heart and carries me to the darkened window. As His breath dispels ice crystals formed in the shape of a dove, He points outside and says, “Look beyond your own comfort, to see what I see.”

In the crisp chill of a winter night, the heavens open and I know fully even as I am fully known.

My life includes gifts many healthy people experience. The chance to wed and to have children. The gift of friends and loved ones, a home and a church. But, the most intriguing gifts are the ones He gives through illness.

I realize I can’t, God can, and I let Him.

In being sick, I am forced to lean on Christ more. I appreciate the beauty of each snowfall, not just the first one, because I have time to treasure His creation. I realize that being physically weaker doesn’t mean I am worthless. Using my heart instead of my hands is my role in the body of believers.

As He caresses my face with a look of love I can’t begin to fathom He says…

“My child, the true gift you hold tonight is me. I want for you to know me and to love me above all else. Because this is truth, your illness isn’t some evil plan of mine designed for your ruin. It’s meant to bring you closer to me, my heart and my will for your life. For without it, you wouldn’t be all I’ve planned for you. Remember, when you begin to doubt my love, that I came as a babe to save all mankind. I am the gift.”

With that thought echoing in my heart, I kiss His check and accept my gift.

Dana Kennedy is a survivor, encourager, wife and mother. She writes a devotional column for Glory and Strength e-magazine. It has taken Dana the better part of 17 years to begin to understand the gifts God has hidden for her in chronic illness, especially Himself. Dana welcomes your contact at dtearosee@earthlink.net

Looking for more great articles like this one? Contact:
Rest Ministries, Inc.
PO Box 502928
San Diego, CA 92150
858-486-4685

Invisible Poetry Contest

2011-02-03T10:35:00.000-08:00

Thank you, Dr. Dolan, for hosting the Invisible Poetry Contest. Congratulations to all the winning poets. Thank you for including What's In a Name? in your top 20 pick!

XMRV linked to ME/CFS

2011-01-21T09:32:00.000-08:00

I've been laying low and quiet lately, focusing on my striving to heal. This has been a particularly rough week physically, after a severe allergic reaction to airborne latex last weekend.

Today's a big day in the blogging world as ME/CFS patients try to raise awareness about XMRV and the link to Chronic Fatigue Syndrome. Since I don't have the energy to write a unique article myself, I'm using a template post that someone else put a lot of time and energy into writing for me. If you area long-time followers of this blog, a lot of the information may be review, thought there are a few links I don't think I've posted before. If you are new to GivenMeaThorn, here's a great basic overview of what the excitement about XMRV is all about. From a personal perspective of why this is all so important to me, here's the link to a poem I wrote last year.

-----------------------

In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987

Fighting Infections

2010-12-29T09:31:00.000-08:00

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

2010-12-28T14:13:00.000-08:00

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?

2010-12-15T08:30:00.000-08:00

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

2010-12-06T11:27:00.000-08:00

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

2010-11-20T19:32:00.000-08:00

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

2010-11-13T12:52:00.000-08:00

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"

2010-11-01T08:55:00.000-07:00

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?

2010-10-30T10:57:00.000-07:00

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

2010-10-20T14:23:00.000-07:00

This Isn't Light!

2010-10-19T13:31:00.000-07:00

"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

2010-10-08T18:11:00.000-07:00

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

2010-10-01T09:31:00.000-07:00

"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

2010-09-23T11:13:00.000-07:00

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

2010-09-22T12:19:00.000-07:00

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

2010-09-21T10:56:00.000-07:00

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

2010-09-16T18:36:00.000-07:00

‎"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]

"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

2010-09-14T08:36:00.000-07:00

"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

2010-09-12T17:49:00.000-07:00

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

2010-09-09T09:20:00.000-07:00

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

2010-08-25T21:04:00.000-07:00

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

2010-08-21T16:41:00.000-07:00

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.

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

2010-08-20T10:46:00.000-07:00

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

2010-08-16T09:04:00.000-07:00

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

2010-08-10T14:45:00.000-07:00

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

2010-08-03T14:45:00.000-07:00

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

2010-07-26T18:23:00.000-07:00

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

2010-07-26T14:01:00.000-07:00

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!

2010-07-18T19:49:00.000-07:00

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

2010-07-15T20:31:00.000-07:00

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

2010-07-06T22:02:00.000-07:00

Making Progress

2010-07-06T09:42:00.000-07:00

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

2010-06-21T18:42:00.000-07:00

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

2010-06-21T09:56:00.000-07:00

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

2010-06-20T22:50:00.000-07:00

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

2010-06-17T09:41:00.000-07:00

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

2010-06-14T09:47:00.000-07:00

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

2010-06-14T09:41:00.000-07:00

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?

2010-05-03T10:32:00.001-07:00

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! :)

Hope in the Shadows

2009-09-19T11:12:00.000-07:00

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:

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.

"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)

"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 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)

Broken Feet

2009-05-30T07:55:00.001-07:00

Just after we moved to Reno 11 years ago, I broke the small bone in my left foot that connects my little toe to my ankle. That break resulted in surgery and I still have two pins holding those bones together.
Well, graceful woman that I am, I managed to break the exact same bone, but this time in my right foot, the beginning of this week. At this point the foot is still too swollen to cast and the jury is out about surgery or not because of the placement of the fracture. So I'm in a splint with instructions to keep the foot elevated (thus greatly limiting computer access) and to bear no weight on it for 6 weeks.
On Wednesday we plan to take another set of x-rays and either cast or schedule surgery (depending on what the x-rays reveal about current healing) at that point.

A Thorny Season

2009-02-22T21:44:00.000-08:00

I have a chronic illness that stems back to a virus I had as a child and the acute onset of additional complications my freshman year of college. I've lived my entire adult life battling pain and debilitating fatigue and a range of other symptoms, but some seasons are better than others. At my worst I spent 2 years nearly entirely bedridden, so I am very thankful for every day I can get out of bed and function at a reasonably normal level.

Having said that, I am going through a pretty rough season right now and could use some extra encouragement and prayers. I am seeing a wonderful doctor (one of the world's leading specalists in his field!) and am receiving the most in depth care I've had in 20 years. I am very thankful!

But my current treatments are taking a toll on me and I'm struggling physically at a level I haven't faced on a daily basis in several years. My doctor had warned me that this 6 weeks of treatment could make me feel a lot worse before I started seeing any benefits, and for the first 2 weeks I thought I had gotten off pretty easily. But the harder parts hit with vengance a few days ago and I know I still have 3 1/2 weeks ahead of me for this particular treatment.

Thank you for your prayers. I am striving to "Be joyful in hope, patient in affliction, faithful in prayer" (Romans 12:12). These struggles, while seemingly all-consuming to me in the midst of them, are truly "light and momentary" (2 Corinthians 4:17) in the grand scope of eternity and even God's plan for my life here and now! Even so, I can so easily loose sight of God's grace and mercy and start down the path of self-pitty when I know that choosing joy is the better path on all counts! So your prayers are a blessing and I humbly ask you to uphold me before the Lord at this time, yes, for physical endurance and even healing if it is the Lord's good pleasure to grant this blessing. But most of all I ask your prayers that my heart would remain right before Him in the midst of this current struggle and that I would continue feeding on the joy of the Lord.

Got Spoons?

2008-11-21T08:06:00.000-08:00

Christine, creator of The Spoon Theory, gives voice to the two sides of living with chronic illness, the face everyone sees in public compared with daily reality we don't often let others see:
My Secret Is Safe With Me

When All is Stripped Away

2008-09-21T20:51:00.001-07:00

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!

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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 Given Me a Thorn 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)

BlogTalk Radio link - Medications, Illness, Fertility, Desire for Motherhood

2008-09-09T20:53:00.000-07:00

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 www.blogtalkradio.com/invisibleillnessconf/2008/09/09/Medications-Illness-Fertility-and-the-Desire-for-Motherhood.

My "Other" Illness

2008-09-04T09:39:00.000-07:00

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.

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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. [Updated to add: Jenni finally discovered the root cause of her illness in October, 2009 with the diagnosis of the retrovirus XMRV.] 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 both Endometriosis and 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).

http://www.HarvestingHope.blogspot.com
http://www.HannahsHopeBook.com and accompanying blog at http://www.HannahsHopeBook.blogspot.com
Hannah's Prayer Ministires at http://www.Hannah.org

I'll be on blog radio next week!

2008-09-03T16:36:00.000-07:00

Press Release:

Christian Organization Unites the Millions Who Live with Invisible Illness

Contact: Lisa Copen, Rest Ministries, 858-486-4685, rest@restministries.org

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) [Details on how to listen/join in this program are posted at Invisible Illness Week Conference Info. Jenni's session on "Medications, Illness, Fertility and the Desire for Motherhood" will air Tuesday, Sept 9, 12 p.m. Pacific.]

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 www.invisibleillness.com. Rest Ministries is at www.restministries.org.

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

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

National Invisible Chronic Illness Awareness Week
Founder & Coordinator

“HOPE CAN GROW FROM THE SOIL OF ILLNESS!”
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.
http://www.InvisibleIllness.com and our blog
http://www.InvisibleIllness.Wordpress.com