Saturday, October 8, 2011

My Next Book

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.

Tuesday, September 13, 2011

Focus

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.

Monday, September 12, 2011

National Invisible Chronic Illness Week


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?

Monday, August 8, 2011

Friday, August 5, 2011

Being Whole

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.

Sunday, July 24, 2011

Fibromyalgia

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.

Vivint is giving away $1.25 Million to charities. Help us win!

Saturday, May 21, 2011

Easy Activism

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

Tuesday, May 17, 2011

Homeschooling Chronically Ill Children

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.

Tuesday, May 10, 2011

Explaining Fibromyalgia

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.

Monday, May 2, 2011

Burden Bearers

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.

Thursday, April 28, 2011

Illness and Infertility

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!

Monday, April 25, 2011

Secret of Contentment

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.

Sunday, April 24, 2011

Easter Encouragement

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!!!

Thursday, April 21, 2011

When God Says No

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.

Monday, April 18, 2011

Chronic Grace

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."

Thursday, April 14, 2011

Beautiful Bruises

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?

Monday, April 11, 2011

Weakness in Strength

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.

Monday, April 4, 2011

$5 book coupon

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! :)

Monday, March 28, 2011

Paws for Comfort

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. :)

Saturday, March 19, 2011

Faces

"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.

Added to say, as to how I can reply to those comments, my friend, Lisa Copen, has put together a bunch of great ideas on her website:

Helpful list of latex products and latex-free alternatives: Directory of Latex Free, Non Medical Products - UK

Latex-free event planning and alternatives. Including tips such as, "Teachers that use balloons for in class pressure experiments can try inserting a rubber balloon inside of a clear 18" plastic balloon just before class.  This will allow most experiments to be conducted without other modification".

"A quick google search turned up over 200 schools in the US alone that banned latex for the 2006-07 school year.  While my googling turned up lawsuits on both sides of the issue (parents with children that have a latex allergy suing to force a ban and parents who sue over being saddled with the sometimes very high additional costs involved when a ban is put in place at their child's school), as entertainers we should expect these numbers to continue to grow on a year-over-year basis.  "

Non-latex balloons and ideas.

I love this sign!

My more recent article on When Balloons Are Scary is at http://givenmeathorn.blogspot.com/2015/10/when-balloons-are-scary.html.

Wednesday, March 16, 2011

Thorny Situation

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

Monday, February 28, 2011

God's Comfort Zone

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."

Wednesday, February 23, 2011

Spinal Fluid

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."

Thursday, February 17, 2011

Chronic Lifestyle

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.

Friday, February 11, 2011

My Valentines Day Gift... of Pain?

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

Thursday, February 3, 2011

Invisible Poetry Contest

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!

Friday, January 21, 2011

XMRV linked to ME/CFS

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.

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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