Showing posts with label how to help. Show all posts
Showing posts with label how to help. Show all posts
Sunday, January 26, 2014
Finish Well
It has taken me a few months, but I just finished a full edit of Harvesting Hope last night. I found six chapters (out of 15) that either need some re-writes, additional new material, or just some simple finalization and finishing. If God wills, we are just looking at a couple more months before I start actively seeking a publisher for the manuscript. I just posted some specific prayer needs and my current health update over at Stroke of Grace and would be so blessed if you will partner with me in praying that I finish this stage well and that God throws wide open doors with the publisher He has already ordained for this project.
Wednesday, May 11, 2011
Through the Valley
Today I'm sharing two more windows into my past on the Hannah's Hope book blog (my struggle with depression) and on Held (God's grace to carry me through that dark valley).
If you or someone you love if caught in a similar struggle, these resources might help.
Suicide Prevention:
U.S. Suicide Prevention Hotline - 1-800-SUICIDE
International Suicide Prevention Listings - http://www.befrienders.org
General Depression Resources:
My Story, as posted here at Harvesting Hope last year.
Depression is Not a Sin (Focus on the Family)
Just Breathe (in)Courage
Common Cold of Emotional Illnesses
Women and Depression
Mental Health
Depression After Pregnancy Loss:
Is Miscarriage Supposed to be This Hard? (Focus on the Family)
Out of the Valley Post-Partum (Including Post-Miscarriage) Hope
If you or someone you love if caught in a similar struggle, these resources might help.
Suicide Prevention:
U.S. Suicide Prevention Hotline - 1-800-SUICIDE
International Suicide Prevention Listings - http://www.befrienders.org
General Depression Resources:
My Story, as posted here at Harvesting Hope last year.
Depression is Not a Sin (Focus on the Family)
Just Breathe (in)Courage
Common Cold of Emotional Illnesses
Women and Depression
Mental Health
Depression After Pregnancy Loss:
Is Miscarriage Supposed to be This Hard? (Focus on the Family)
Out of the Valley Post-Partum (Including Post-Miscarriage) Hope
Saturday, September 11, 2010
Encouragement Day
Sept. 12 is National Day of Encouragement. To mark this day, DaySpring was kind enough to encourage me by sending a package of 10 beautiful cards so that I could, in turn, pass encouragement on to some friends. As cards spilled out onto my bed, I was delighted to see how God had inspired the card authors and artists to match the unique needs and personalities of several specific friend. Names popped to mind one after another as I quickly made a list of those who could use a reminder that they are loved and important and prayed for right now:
- a few friends for whom life has not gone as planned
- some grieving friends, including an elderly woman in a nursing home and the husband of a dear friend, both whom lost spouses to cancer within the past year
- a family fighting for hope in the face of long-term unemployment
- several battling cancer, recovering from recent surgeries, or fighting chronic health challenges
- someone courageously journeying through depression
- a couple of thank yous to friends who have been a faithful encouragers to me in the past
- someone who is learning to be a "single mom" in the midst of painful separation from her husband
In fact I was so encouraged at the idea of dropping hugs and prayers in the mailbox that I soon found myself selecting additional cards and addressing more envelopes. Most fun of all, I addressed a card that I think we be of special encouragement to a whole group of ladies who are closely connected. I included instruction for them to forward it on from one to the next, adding their own notes along the way, until the card has circulated to this entire group who is in need of a dose of extra encouragement at the moment. I'll tuck a book of stamps inside before I seal the envelope to help accomplish this goal. :)
In addition to being National Day of Encouragement, we are also entering National Invisible Chronic Illness Awareness Week and this year's theme is "each one reach one." Is there one person for whom you can find a small way of offering encouragement today? Perhaps send her an eCard, leave a sticky note, or check out comments at (in)Courage to see how others are offering encouragement today.
Are you in need encouragement? Please leave a comment and let me know how I can be praying for you!
- a few friends for whom life has not gone as planned
- some grieving friends, including an elderly woman in a nursing home and the husband of a dear friend, both whom lost spouses to cancer within the past year
- a family fighting for hope in the face of long-term unemployment
- several battling cancer, recovering from recent surgeries, or fighting chronic health challenges
- someone courageously journeying through depression
- a couple of thank yous to friends who have been a faithful encouragers to me in the past
- someone who is learning to be a "single mom" in the midst of painful separation from her husband
In fact I was so encouraged at the idea of dropping hugs and prayers in the mailbox that I soon found myself selecting additional cards and addressing more envelopes. Most fun of all, I addressed a card that I think we be of special encouragement to a whole group of ladies who are closely connected. I included instruction for them to forward it on from one to the next, adding their own notes along the way, until the card has circulated to this entire group who is in need of a dose of extra encouragement at the moment. I'll tuck a book of stamps inside before I seal the envelope to help accomplish this goal. :)
In addition to being National Day of Encouragement, we are also entering National Invisible Chronic Illness Awareness Week and this year's theme is "each one reach one." Is there one person for whom you can find a small way of offering encouragement today? Perhaps send her an eCard, leave a sticky note, or check out comments at (in)Courage to see how others are offering encouragement today.
Are you in need encouragement? Please leave a comment and let me know how I can be praying for you!
Monday, June 21, 2010
Homelessness
It's a problem all across our country, evidence by the huddled lump under the blanket as I drive under the freeway overpass, the man on the corner with the cardboard sign, the lady with way too many layers of clothing who is pushing her shopping cart down the sidewalk laden with all her worldly possessions.
It's such a big problem. What can I do? What should I do? I don't want to be scammed. I don't want to enable someone in their drinking or drug addiction. I don't want to turn a blind eye either. What's the answer?
These questions were recently addressed in a straight-from-the-heart confession by Lysa Terkeurst over at (in)Courage. As I read through her story and remembered a few of my own encounters with people in need, I realized it was time to share these stories with you as well.
One bitterly cold winter evening several years ago, we drove past an elderly man on the corner, icicles dripping off his beard. We had only the length of the red light to make a decision and chose to drive on when the color changed to green. We knew in our hearts God was calling us to do more but let the rush of holiday excitement stand in our way. A couple hours later we left our party and went back to find him so we could pay for a cheep motel room for the night, but we couldn't track him down.
To this day I can't help but wonder if he wasn't an "angel unaware" that we failed to offer the hospitality God so clearly prompted us to give. I've never been able to pass another cardboard sign without deep conviction that God calls us to reach out to the hopeless and needy, sometimes in small ways, sometimes more.
We pray for each person we encounter who seems to be in need and have a family policy that if it is within our power to help, that will be our default plan. We have, at times, bought meals or even given cash, as God prompts our hearts. More than once we have passed someone, driven on to the nearest fast food drive-through, then circled back around to go out of our way to hand a lunch out the window. (Our kids have felt "doubly blessed" the couple of times that we've had a bag full of fast food goodies then not been able to track the person they were purchased for back down and the kids have fallen to the task of eating the food for us.) I've heard of many other creative alternatives like friends who carry fast food $5 gift card to share with those in need.
As we pray for people, there are rare times God gives us peace to refrain from giving in that circumstance (simple inability to physically get to a person who is out of our flow of traffic, personal safety for ourselves and our children, or outright lack of peace that giving is what we are called to do in that particular situation), but overall we believe that unless God is telling us NOT to give, that His commandment to give is clear. I have no doubt we have been scammed a few times, but that's between the other person and God. I'm only responsible to act in obedience as God calls me.
Our church introduced us to the concept of Manna Bags. We now carry Ziplock bags in our car containing a bottle of water, a couple of protein bars, socks (sock are like gold if you live on the street, even in the heat of summer), dried fruit, etc. You could add things like toothbrush, travel size toiletries, or whatever else God puts on your heart. Check out this list of ideas.
The name being Manna Bags acknowledges that this little bag will not change anyone's world, but like manna, it can be God's provision to meet his or her physical needs for this one day. I may not be able to make a huge dent in the plight of homelessness or meet an ongoing need for any one person, but just like in the Starfish Story, I can bring a glimmer of hope to one person for one day. When I gave out a Manna Bag in a parking lot last week, the man had totally eaten his first granola bar before I even made it back to the car - no doubt he was truly hungry. As so often happens, it was the socks that really got him excited and brought tears to his eyes.
I'm also working on a list of area missions and shelters and soups kitchens and such, along with addresses and phone numbers, that we can enclose in the bag along with a written prayer so that hopefully we can help direct people to more long-term solutions. I long to help meet the needs of spiritual hunger as well as physical and continue to pray about what kinds of resources I might include that will fill this void. Please share your suggestions and ideas to help me in this!
I'll never forget the day I had just taken our kids to a special bakery and bought a loaf of gourmet bread for three times what I normally would pay in the grocery store. It was warm and fresh and we each savored a single piece as soon as we got to the car, anticipating the rest with our dinner. Pulling out of the parking lot we spotted a couple shivering by the stop sign. I had nothing in the car to give but that treasured loaf of bread and even though it was a treat they loved, my kids didn't think twice. I pointed out the couple and before I could even ask what we should do I heard from the backseat, "Roll down the window Mommy. We still have most of our loaf of bread!"
It's hard to say what that couple thought of a partially eaten loaf of bread, though I think they were hungry enough that they seemed genuinely thankful to receive it. But watching my kids give from the depths of their hearts meant more to me than a million dollars, and scam or no scam, we were all richer for the experience! "The people who needed our bread" was something they joyfully talked about for years.
Please share with me your stories. How have you been blessed by the kindness of a stranger? How have you made a positive difference in someone's life, even if only for one day? Have you witnessed creative ways we can bring comfort and hope as the hands and feet of Christ. I would love to hear what YOU have to say!
It's such a big problem. What can I do? What should I do? I don't want to be scammed. I don't want to enable someone in their drinking or drug addiction. I don't want to turn a blind eye either. What's the answer?
These questions were recently addressed in a straight-from-the-heart confession by Lysa Terkeurst over at (in)Courage. As I read through her story and remembered a few of my own encounters with people in need, I realized it was time to share these stories with you as well.
One bitterly cold winter evening several years ago, we drove past an elderly man on the corner, icicles dripping off his beard. We had only the length of the red light to make a decision and chose to drive on when the color changed to green. We knew in our hearts God was calling us to do more but let the rush of holiday excitement stand in our way. A couple hours later we left our party and went back to find him so we could pay for a cheep motel room for the night, but we couldn't track him down.
To this day I can't help but wonder if he wasn't an "angel unaware" that we failed to offer the hospitality God so clearly prompted us to give. I've never been able to pass another cardboard sign without deep conviction that God calls us to reach out to the hopeless and needy, sometimes in small ways, sometimes more.
We pray for each person we encounter who seems to be in need and have a family policy that if it is within our power to help, that will be our default plan. We have, at times, bought meals or even given cash, as God prompts our hearts. More than once we have passed someone, driven on to the nearest fast food drive-through, then circled back around to go out of our way to hand a lunch out the window. (Our kids have felt "doubly blessed" the couple of times that we've had a bag full of fast food goodies then not been able to track the person they were purchased for back down and the kids have fallen to the task of eating the food for us.) I've heard of many other creative alternatives like friends who carry fast food $5 gift card to share with those in need.
As we pray for people, there are rare times God gives us peace to refrain from giving in that circumstance (simple inability to physically get to a person who is out of our flow of traffic, personal safety for ourselves and our children, or outright lack of peace that giving is what we are called to do in that particular situation), but overall we believe that unless God is telling us NOT to give, that His commandment to give is clear. I have no doubt we have been scammed a few times, but that's between the other person and God. I'm only responsible to act in obedience as God calls me.
Our church introduced us to the concept of Manna Bags. We now carry Ziplock bags in our car containing a bottle of water, a couple of protein bars, socks (sock are like gold if you live on the street, even in the heat of summer), dried fruit, etc. You could add things like toothbrush, travel size toiletries, or whatever else God puts on your heart. Check out this list of ideas.
The name being Manna Bags acknowledges that this little bag will not change anyone's world, but like manna, it can be God's provision to meet his or her physical needs for this one day. I may not be able to make a huge dent in the plight of homelessness or meet an ongoing need for any one person, but just like in the Starfish Story, I can bring a glimmer of hope to one person for one day. When I gave out a Manna Bag in a parking lot last week, the man had totally eaten his first granola bar before I even made it back to the car - no doubt he was truly hungry. As so often happens, it was the socks that really got him excited and brought tears to his eyes.
I'm also working on a list of area missions and shelters and soups kitchens and such, along with addresses and phone numbers, that we can enclose in the bag along with a written prayer so that hopefully we can help direct people to more long-term solutions. I long to help meet the needs of spiritual hunger as well as physical and continue to pray about what kinds of resources I might include that will fill this void. Please share your suggestions and ideas to help me in this!
I'll never forget the day I had just taken our kids to a special bakery and bought a loaf of gourmet bread for three times what I normally would pay in the grocery store. It was warm and fresh and we each savored a single piece as soon as we got to the car, anticipating the rest with our dinner. Pulling out of the parking lot we spotted a couple shivering by the stop sign. I had nothing in the car to give but that treasured loaf of bread and even though it was a treat they loved, my kids didn't think twice. I pointed out the couple and before I could even ask what we should do I heard from the backseat, "Roll down the window Mommy. We still have most of our loaf of bread!"
It's hard to say what that couple thought of a partially eaten loaf of bread, though I think they were hungry enough that they seemed genuinely thankful to receive it. But watching my kids give from the depths of their hearts meant more to me than a million dollars, and scam or no scam, we were all richer for the experience! "The people who needed our bread" was something they joyfully talked about for years.
"Suppose a brother or sister is without clothes and daily food. If one of you says to him, 'Go, I wish you well; keep warm and well fed,' but does nothing about his physical needs, what good is it? In the same way, faith by itself, if it is not accompanied by action, is dead."
- James 2:15-17
Please share with me your stories. How have you been blessed by the kindness of a stranger? How have you made a positive difference in someone's life, even if only for one day? Have you witnessed creative ways we can bring comfort and hope as the hands and feet of Christ. I would love to hear what YOU have to say!
Thursday, June 17, 2010
Your Help?
My book, Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss has been nominated by the oldest, and one of the largest, infertility support networks in the nation, as one of the top four "best" infertility books for 2010. Their 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!!!
Monday, May 3, 2010
Vote for me as a Health Hero?
I was blessed to be nominated as a Woman's Health Hero and I need your help! (Head's up to my friends who are sensitive to mentions of pregnancy, the sponsors of this award do promote pregnancy-related books on their website, so please be for-warned before following this link.) Out of all entries, just 20 names will be inducted into a Health Hall of Fame. Two Hall-of-Fame selections will receive special honors as either Staff Pick or Audience Choice award determined by the public (that's you!).
You will be allowed to vote on all entries between now and May 14 (extended one week from the prior May 7 deadline), 2010. The entry that receives the highest overall ranking will win the Audience Choice award. Last year's Audience Choice winner was my dear friend Lisa Copen from Rest Ministries. I would be delighted to add a similar honor to my "resume" as I continue working on writing my book on the life of Paul as encouragement for living with chronic pain/illness.
Will you please help me by heading to www.ourbodiesourblog.org/blog/2010/05/comforting-those-with-fertility-challenges-jenni-saake and selecting the "thumbs up" voting button at the bottom of my profile? Thank you so much! :)
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! :)
Monday, March 29, 2010
Thorns, Weeds, Give-away and Hope
Dealing with infertility, pregnancy loss or adoption struggles or know someone who is? I came across a give-away for my book, Hannah's Hope, on the Life {Sweet} Life blog today, open through April 1! The blog author, Sarah, is currently pregnant, but has a heart for those still walking the road of infertility.
Sarah's also got some great things to say about FamilyLife Weekend to Remember. Read my review here or between April 5-26, 2010, register for any upcoming Spring or Fall Weekend to Remember using the promotion code "INVITE" and go for 1/2 price, only $129/couple!
I'm still praying my way through the life of Paul, thus giving a lot of thought to thorns and weeds. Today's post at (in)Courage, Ellie and the Weeds is a sweet reminder to let God be our gardener. (To my infertility/loss friends, the article is built sweet conversations between a mother and her 3-year-old, but this mother has also suffered infant death if this knowledge makes the sweet exchange more readable for you).
I would like to ask your specific prayers for protection over me and for my family as I venture deeper into my Paul writing. I'm starting to see signs that satan's not happy with what God's wanting to accomplish through this book and he's trying to attack us, invading my dreams with ugly images, taking reign over my tongue in ugly words that tear down my loving husband, and bringing a spirit of disorder and discord into our home. In a way I'm thankful for these attacks only because they affirm that I must be on the right track if the old snake would take the time to try to sideline us, but I also know God longs for us to come running to Him with our fears and frustrations, and so I ask you to join me prayer for God to be glorified in and through our family in a time of spiritual warfare.
Would you pray with me that the Lord will keep us steadfast in Him and bring joy and harmony to our home as He speaks truth to me and helps me to rightly divide His Word to share with hearts broken through chronic physical pain and illness? If you would like to join me as a prayer partner for this newest writing project, please leave me a note here or email me at jsaake AT yahoo DOT com and I'll send you periodic prayer updates as the book project continues to unfold. Thank you!
Sarah's also got some great things to say about FamilyLife Weekend to Remember. Read my review here or between April 5-26, 2010, register for any upcoming Spring or Fall Weekend to Remember using the promotion code "INVITE" and go for 1/2 price, only $129/couple!
I'm still praying my way through the life of Paul, thus giving a lot of thought to thorns and weeds. Today's post at (in)Courage, Ellie and the Weeds is a sweet reminder to let God be our gardener. (To my infertility/loss friends, the article is built sweet conversations between a mother and her 3-year-old, but this mother has also suffered infant death if this knowledge makes the sweet exchange more readable for you).
I would like to ask your specific prayers for protection over me and for my family as I venture deeper into my Paul writing. I'm starting to see signs that satan's not happy with what God's wanting to accomplish through this book and he's trying to attack us, invading my dreams with ugly images, taking reign over my tongue in ugly words that tear down my loving husband, and bringing a spirit of disorder and discord into our home. In a way I'm thankful for these attacks only because they affirm that I must be on the right track if the old snake would take the time to try to sideline us, but I also know God longs for us to come running to Him with our fears and frustrations, and so I ask you to join me prayer for God to be glorified in and through our family in a time of spiritual warfare.
Would you pray with me that the Lord will keep us steadfast in Him and bring joy and harmony to our home as He speaks truth to me and helps me to rightly divide His Word to share with hearts broken through chronic physical pain and illness? If you would like to join me as a prayer partner for this newest writing project, please leave me a note here or email me at jsaake AT yahoo DOT com and I'll send you periodic prayer updates as the book project continues to unfold. Thank you!
Monday, March 22, 2010
Need Your Help for My Next Book
As some of you may know I have been "in the early stages" of writing a book on the life of Paul, specifically his "thorn in the flesh" for the past few years. It is to be an encouraging resource for living with chronic pain and illness. I've been reading, researching, jotting notes, gathering ideas, but for a very long time now it's been only that, a collection of thoughts and ideas that did very little to resemble any attempt at an actual book manuscript. I've been anxious to move forward, but felt over and over that God was telling me to wait. And so I have.
I still don't know how soon, or how far I will make progress, but over the past few weeks I've seen God very gently start taking my random collection of concepts and begin the thrilling process of shaping them into the skeleton of a book outline. I'm hesitant to say I'm actually "writing a book" yet because it's still very early in the process, but I am encouraged that ideas are starting to be pulled together in some semblance of order and I'm hopeful that there may really be a manuscript at the end of this process.
As I wrote Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss, I ended each chapter with a "Burden Bearers" section, based on the story of the four friends who carried the paralyzed man to Jesus and lower him through the roof for healing, along with the concept that God commands us to bear one another's burdens. It was a short section that gave ideas, instruction and insight to friends, family and loved ones of a couple facing fertility challenges.
I would like to do a similar thing with this new book and base chapter closings on various characters who touched Paul's life, men like Timothy, Barnabas and so forth. I would spotlight one "hero" per chapter and look at things that person can teach us about encouraging someone through their thorns.
So here's what I need from you. Please let me know what you would call such sections? I don't want to reuse "Burden Bearer" for this is a new book with a new goal and while I'm copying the concept, I feel like the sections themselves need a unique title. I've played with ideas like "Fellow Travels," "Helping Heroes," "Heroes of Hope" and others, but so far nothing really feels like the right fit. A couple of recurrent themes I plan to use through the book are blindness v/s light/sight (with a different twist than you might expect) and gardening/harvesting v/s thorns/weeds. I'm tossing that out there in case either of these topics help point to a section title idea.
I would also like to start doing monthly testimony spotlights here, spotlighting the lives of people who have touched or influenced my life, sometimes directly, sometimes just in passing by learning of their ministries on the Internet or the personal difference they made in the life of one friend. These are people who are real and flawed and living out daily struggles, but finding joy, Harvesting Hope™ in the midst of the journey. I will probably use the same title for those spotlights as I will use in the working copy of a manuscript (realizing that these section titles will be open to alternative titling by my publisher when the manuscript is reviewed by them).
Please share your suggestions. If you submit one between now and the end of April and I end up selecting it as my blog/section title, I've got a small gift I would like to send your way, so please leave me a valid email address so I can contact you for mailing information if I select you title!
I still don't know how soon, or how far I will make progress, but over the past few weeks I've seen God very gently start taking my random collection of concepts and begin the thrilling process of shaping them into the skeleton of a book outline. I'm hesitant to say I'm actually "writing a book" yet because it's still very early in the process, but I am encouraged that ideas are starting to be pulled together in some semblance of order and I'm hopeful that there may really be a manuscript at the end of this process.
As I wrote Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss, I ended each chapter with a "Burden Bearers" section, based on the story of the four friends who carried the paralyzed man to Jesus and lower him through the roof for healing, along with the concept that God commands us to bear one another's burdens. It was a short section that gave ideas, instruction and insight to friends, family and loved ones of a couple facing fertility challenges.
I would like to do a similar thing with this new book and base chapter closings on various characters who touched Paul's life, men like Timothy, Barnabas and so forth. I would spotlight one "hero" per chapter and look at things that person can teach us about encouraging someone through their thorns.
So here's what I need from you. Please let me know what you would call such sections? I don't want to reuse "Burden Bearer" for this is a new book with a new goal and while I'm copying the concept, I feel like the sections themselves need a unique title. I've played with ideas like "Fellow Travels," "Helping Heroes," "Heroes of Hope" and others, but so far nothing really feels like the right fit. A couple of recurrent themes I plan to use through the book are blindness v/s light/sight (with a different twist than you might expect) and gardening/harvesting v/s thorns/weeds. I'm tossing that out there in case either of these topics help point to a section title idea.
I would also like to start doing monthly testimony spotlights here, spotlighting the lives of people who have touched or influenced my life, sometimes directly, sometimes just in passing by learning of their ministries on the Internet or the personal difference they made in the life of one friend. These are people who are real and flawed and living out daily struggles, but finding joy, Harvesting Hope™ in the midst of the journey. I will probably use the same title for those spotlights as I will use in the working copy of a manuscript (realizing that these section titles will be open to alternative titling by my publisher when the manuscript is reviewed by them).
Please share your suggestions. If you submit one between now and the end of April and I end up selecting it as my blog/section title, I've got a small gift I would like to send your way, so please leave me a valid email address so I can contact you for mailing information if I select you title!
Friday, February 26, 2010
Hope in Your Jeans?
Rather make that Genes. Well, actually, both!
I'm talking about The Global Genes Project World Rare Disease Day on Feb. 28. From their website, "Imagine lawyers in courtrooms, business executives in boardrooms, state legislators and others from all walks of life wearing jeans the week before or Friday before World Rare Disease Day – all to show their support for those affected by rare disease worldwide. www.rarediseaseday.us."
My first real introduction to rare diseases was in the early 1990s through Hannah's Prayer Ministries where I met many amazing families, some struggling to grow their families yet facing infertility due to the rare conditions faced by the husband or wife, others crushed under the grief that comes to parents whose children are diagnosed with rare, life-threatening (often "incompatible with life") diseases. At that point the only resource I knew to share with families were National Organization for Rare Disorders (NORD) and NATHHAN National Challenged Homeschoolers Associated Network.
Little did I know then how personally Rare Diseases would eventually touch our home. When our daughter was two we endured many stressful and frightening months as she was being evaluated for a specific form of dwarfism with many accompanying complications (something that's never fully been "ruled out" but because her growth has improved dramatically, investigation was eventually put on hold unless/until we have additional reason for concern). Then five months ago we learned of my XMRV diagnosis, a retrovirus that may turn out to be very wide-spread but currently has only been diagnosed in a few hundred cases because the testing is so new. I've lived with it for at least 19 years, possibly much longer, but doctors are just beginning to learn anything about my condition and still have no idea how to manage my care.
If you have a illness that "no one has heard of" it used to be that you might go your whole lifetime without ever connecting with someone else who knew your struggles personally. Now the internet makes it possible to find so much information (sometimes "too much" information!) and support communities abound. In honor of World Rare Disease Day, I want to point to the personal websites of a couple of families I regularly pray for, even as I'm inspired by their perseverance under trying times:
Heather (you might know her as "Especially Heather") is an amazing woman who has gone through more than seems fair for any one lifetime, yet her smile continues to shine for Jesus. Her story includes brain cancer and the removal of a tumor "the size of a nine iron" in 2007. But it's her daughter Emma's story that I want to point out today. This little girl was written off by the medical community before she was ever born but proved them all wrong with a lusty cry upon birth in 2001. She had a heart/lung transplant at just 5 months of age, has both Complex 1 and Complex 3 Mitochondrial Myopathy, is autistic, and is now waiting for a second heart transplant due to Transplant Related Coronary Artery Disease. As of this week, Emma was back in ICU running a fever of unknown origin and could use our prayers!
While we have yet to meet in person, though I've talked with their mother by phone and facebook and know their cousin well, Addi and Cassi Hemple are a couple of local girls who I've mentioned in the past. Living here in Reno, these 5-year-old twins who suffer from Niemann Pick Type C disease (childhood Alzheimer's) hold an especially tender spot in my heart.
I'm running out of time and energy to post other stories right now, but I couldn't close this short list of stories without mentioning the wonderful folks at the Whittemore Peterson Institute who are working nearly around the clock to find answers about XMRV for those like me who have already been identified and the potentially thousands or even tens of thousands (thus no longer making it "rare"!) more who are waiting for answers! Won't you please join me in wearing your jeans to show your hope in finding answers in genes???
What does wearing jeans stand for?
Are you or someone you love impacted by rare disease? I would be honored to pray for you if you would please share your story in the comments section here. I'm always thrilled to find new links to personal stories and support sites/organizations as well, so please tell me about the resources that have most helped you!
I'm talking about The Global Genes Project World Rare Disease Day on Feb. 28. From their website, "Imagine lawyers in courtrooms, business executives in boardrooms, state legislators and others from all walks of life wearing jeans the week before or Friday before World Rare Disease Day – all to show their support for those affected by rare disease worldwide. www.rarediseaseday.us."
My first real introduction to rare diseases was in the early 1990s through Hannah's Prayer Ministries where I met many amazing families, some struggling to grow their families yet facing infertility due to the rare conditions faced by the husband or wife, others crushed under the grief that comes to parents whose children are diagnosed with rare, life-threatening (often "incompatible with life") diseases. At that point the only resource I knew to share with families were National Organization for Rare Disorders (NORD) and NATHHAN National Challenged Homeschoolers Associated Network.
Little did I know then how personally Rare Diseases would eventually touch our home. When our daughter was two we endured many stressful and frightening months as she was being evaluated for a specific form of dwarfism with many accompanying complications (something that's never fully been "ruled out" but because her growth has improved dramatically, investigation was eventually put on hold unless/until we have additional reason for concern). Then five months ago we learned of my XMRV diagnosis, a retrovirus that may turn out to be very wide-spread but currently has only been diagnosed in a few hundred cases because the testing is so new. I've lived with it for at least 19 years, possibly much longer, but doctors are just beginning to learn anything about my condition and still have no idea how to manage my care.
If you have a illness that "no one has heard of" it used to be that you might go your whole lifetime without ever connecting with someone else who knew your struggles personally. Now the internet makes it possible to find so much information (sometimes "too much" information!) and support communities abound. In honor of World Rare Disease Day, I want to point to the personal websites of a couple of families I regularly pray for, even as I'm inspired by their perseverance under trying times:
Heather (you might know her as "Especially Heather") is an amazing woman who has gone through more than seems fair for any one lifetime, yet her smile continues to shine for Jesus. Her story includes brain cancer and the removal of a tumor "the size of a nine iron" in 2007. But it's her daughter Emma's story that I want to point out today. This little girl was written off by the medical community before she was ever born but proved them all wrong with a lusty cry upon birth in 2001. She had a heart/lung transplant at just 5 months of age, has both Complex 1 and Complex 3 Mitochondrial Myopathy, is autistic, and is now waiting for a second heart transplant due to Transplant Related Coronary Artery Disease. As of this week, Emma was back in ICU running a fever of unknown origin and could use our prayers!
While we have yet to meet in person, though I've talked with their mother by phone and facebook and know their cousin well, Addi and Cassi Hemple are a couple of local girls who I've mentioned in the past. Living here in Reno, these 5-year-old twins who suffer from Niemann Pick Type C disease (childhood Alzheimer's) hold an especially tender spot in my heart.
I'm running out of time and energy to post other stories right now, but I couldn't close this short list of stories without mentioning the wonderful folks at the Whittemore Peterson Institute who are working nearly around the clock to find answers about XMRV for those like me who have already been identified and the potentially thousands or even tens of thousands (thus no longer making it "rare"!) more who are waiting for answers! Won't you please join me in wearing your jeans to show your hope in finding answers in genes???
What does wearing jeans stand for?
In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to statistics from the National Institute of Health (NIH), there are thought to be nearly 7,000 life-threatening and heavily debilitating conditions affecting nearly 30 million Americans (1 in 10 people or 10% of the population). Despite the infrequency of each rare disease, the total number of rare disease patients in the United States is equivalent to the total populations of New York and New Jersey combined.
In the European Union's 27 member states, it is estimated that rare disease patients make up between 6% and 8% of the total EU population, or between 27 and 36 million people. This is equivalent to the total combined populations of the Netherlands, Belgium and Luxembourg.
Beyond the US and EU, few reliable rare disease statistics exist for other countries. Some alarming statistics that are currently available include:
* More than half of the 30 million patients in the United States affected with rare disease are children
* Approximately 15 million Americans have rare diseases for which there still is no approved treatments and no research in progress
* Approximately 80% of rare diseases are attributed to genetic defects, many which are untreatable and life-threatening
* In the 25 years since the Orphan Drug Act of 1983 was signed into federal law, the FDA has only approved approximately 350 treatments for all rare diseases combined
Are you or someone you love impacted by rare disease? I would be honored to pray for you if you would please share your story in the comments section here. I'm always thrilled to find new links to personal stories and support sites/organizations as well, so please tell me about the resources that have most helped you!
Friday, January 15, 2010
Hope for Haiti
Haiti. It's all over the headlines. It feels overwhelming, a world away and yet too-close for comfort. And we feel helpless. What can one person do in the face of so much anguish?
Jenny from Simply Delightful Designs knows that while just one person may not be able to do a lot, when we band together we can become a strong force. On her Hope for Haiti blog, many wonderful women and companies are donating items and services to this online raffle for proceeds to go to Red Cross and Compassion International.
Raffle tickets are only $1 per entry and some of the prizes are valued at several hundred dollars! Along with my offer of $30 dollars worth of your choice of Affordable Mineral Makeup™ products the raffle items include everything from blogging conference tickets to photography sessions, books, jewelry and art. Such a great selection of prizes, and all funds raised for a wonderful cause!
Together we can make a difference! Please visit Hope-For-Haiti.blogspot.com and share what you can. Every dollar helps, and you might win a great prize too! Thank you for helping to bring a glimmer of hope to such a hurting slice of our world!
Jenny from Simply Delightful Designs knows that while just one person may not be able to do a lot, when we band together we can become a strong force. On her Hope for Haiti blog, many wonderful women and companies are donating items and services to this online raffle for proceeds to go to Red Cross and Compassion International.
Raffle tickets are only $1 per entry and some of the prizes are valued at several hundred dollars! Along with my offer of $30 dollars worth of your choice of Affordable Mineral Makeup™ products the raffle items include everything from blogging conference tickets to photography sessions, books, jewelry and art. Such a great selection of prizes, and all funds raised for a wonderful cause!
Together we can make a difference! Please visit Hope-For-Haiti.blogspot.com and share what you can. Every dollar helps, and you might win a great prize too! Thank you for helping to bring a glimmer of hope to such a hurting slice of our world!
Monday, January 11, 2010
Do You Want to Celebrate?
Ministry.
Servanthood.
What My Friends/Church Did Right...
All of these seemed possible titles for this post, but "celebration" seems most fitting.
I was sitting alone in the back row at church yesterday. I had made it, but just. I came in using my wheelchair as a walker, thankful to have gotten out the door with three kids while hubby was out of town, but wondering what I was doing there. I had forgotten my Bible, and my glasses, and was so exhausted I wondered if I could stay sitting upright through the sermon.
The service began to draw to its conclusion and members of the Family were invited to slip quietly to the back and enjoy communion during the worship music. I was physically close the communion area and wanted to go, but just didn't have it in me, didn't want to invite attention with my chair, couldn't find the strength.
And then a gentle tap on my shoulder. A whispered invitation, "Do you want to celebrate communion? May I bring you the elements?"
It may have been a small act on his part, but to me it was huge. My eyes instantly welled with tears. God sees. He knows. He cares. And He prompts others to take the risk to be His hands and feet when my own are too weak.
Thank you, Father, for the invitation to celebrate You!
Servanthood.
What My Friends/Church Did Right...
All of these seemed possible titles for this post, but "celebration" seems most fitting.
I was sitting alone in the back row at church yesterday. I had made it, but just. I came in using my wheelchair as a walker, thankful to have gotten out the door with three kids while hubby was out of town, but wondering what I was doing there. I had forgotten my Bible, and my glasses, and was so exhausted I wondered if I could stay sitting upright through the sermon.
The service began to draw to its conclusion and members of the Family were invited to slip quietly to the back and enjoy communion during the worship music. I was physically close the communion area and wanted to go, but just didn't have it in me, didn't want to invite attention with my chair, couldn't find the strength.
And then a gentle tap on my shoulder. A whispered invitation, "Do you want to celebrate communion? May I bring you the elements?"
It may have been a small act on his part, but to me it was huge. My eyes instantly welled with tears. God sees. He knows. He cares. And He prompts others to take the risk to be His hands and feet when my own are too weak.
Thank you, Father, for the invitation to celebrate You!
Sunday, January 3, 2010
Patient Navigator
Patient Navigator LLC is a concept I was only introduced to today. I cannot speak from personal experience, but I have to say that the concept sounds wonderful! While the term "patient navigator" pulls up several search engine results that I have not yet had time to explore, this particular page was mentioned in a recent Rest Ministries email and their goal is work "with patients and families as they journey through illness and aging." They do so be providing "information and research, we advocate on your behalf, we solve problems and we help you benefit from an integrative care approach to your illness."
While this particular organization can only offer one-on-one local support in a few areas, they work with clients "to develop and implement an individualized action plan designed to address administrative tasks, solve problems, advocate for you and mobilize a support system. Your navigator also provides emotional support as we share your journey through treatments, decisions, successes, set-backs and healing." Free telephone consultations are offered anywhere in the U.S.
If you have experience with a patient navigator (either through this website or any other) I would love to hear your experiences!
While this particular organization can only offer one-on-one local support in a few areas, they work with clients "to develop and implement an individualized action plan designed to address administrative tasks, solve problems, advocate for you and mobilize a support system. Your navigator also provides emotional support as we share your journey through treatments, decisions, successes, set-backs and healing." Free telephone consultations are offered anywhere in the U.S.
If you have experience with a patient navigator (either through this website or any other) I would love to hear your experiences!
Thursday, December 3, 2009
More Clean Water for Africa
* 1 in 7 people don’t even have access to a clean water source.
* More people in developing countries die of a water related disease than of malaria and HIV/AIDS combined. It is a problem as urgent as it is compelling.
As shared in my Thanksgiving post, there is much need for clean water in other parts of the world. If you are planning to purchase a Christmas tree this year, why not help fund clean water in Africa at the same time? Find out more about The TreeWell Project at http://lifechurchreno.com/treewell (If you don't live near Reno, NV but like this idea, think about contacting the director of this project to help plan something like this from your own town for next year!)
* Statistics quoted from The TreeWell Project website.
* More people in developing countries die of a water related disease than of malaria and HIV/AIDS combined. It is a problem as urgent as it is compelling.
As shared in my Thanksgiving post, there is much need for clean water in other parts of the world. If you are planning to purchase a Christmas tree this year, why not help fund clean water in Africa at the same time? Find out more about The TreeWell Project at http://lifechurchreno.com/treewell (If you don't live near Reno, NV but like this idea, think about contacting the director of this project to help plan something like this from your own town for next year!)
* Statistics quoted from The TreeWell Project website.
Thursday, November 26, 2009
In Everything Give Thanks
Sometimes when we are struggling with burdens and circumstances of life, it is hard to find anything to be thankful for. Today I'm thankful for the simple things, like easy access to fresh, clean water. Here's a story that I was recently given persmission to share, along with one reason I'm feeling thankful and reflective today.
And if you are looking for something to do with the abundance of leftover turkey from today's bounty, maybe substitute it for the chicken in this tasty recipe from noted author, Kay Marshall Strom. Her recent release, The Call of Zulina, is a novel with accurate historical details regarding slavery in Africa. Below is a recipe and first-hand recollection of Kay's own real-life interactions at the well in Africa.
-----------
LEMON CHICKEN SOUP SENEGAL, WEST AFRICA
This warm, mellow soup from Senegal, West Africa, can easily incorporate any extra turkey you have on hand. Just substitute it for the chicken.
You will need:
1 tablespoon butter
1 teaspoon curry powder
2 teaspoons flour
2 cups chicken broth
cup diced chicken (or turkey)
1 cup yogurt
juice of 1/2 fresh lemon
fresh chives, washed and snipped
Melt the butter in a saucepan over medium heat. Add the curry powder and flour and cook 2 minutes, stirring constantly. Gradually blend in the chicken broth and bring to a boil, continuing to stir constantly. Add diced chicken (or turkey).
Remove the kettle from the heat and cool the soup slightly. Gradually stir in the yogurt, a small amount at a time. Squeeze the juice from the lemon half and add the juice to the soup.
Garnish each bowl of soup with a dash of fresh chives.
The Women at the Well
by Kay Marshall Strom
In Senegal, West Africa, I sat beside the community well, because thats where the village women gathered. Out of the dusty wasteland they came, from every direction, their babies tied to their backs and their water containers balanced on their heads. They were glad to rest beside the well, for they had to walk many miles to get there. The average woman in the world, we are told, walks seven miles a day in her quest for water. When you factor in those of us who only walk to the kitchen to turn on the faucet, you can see that some must trek much farther than seven miles!
At the well, the women have a chance to catch up with the goings-on in neighboring villages, to air their complaints with one another, and to share their own news. And so I sat by the well with Obei and Helene, two Christian women in a country 98 percent Muslim, and waited to meet the women as they came for water.
And come they did.
A young woman came, sobbing over her baby son who was burning with fever. We prayed together in Jesus name that her baby would be healed.
A girl came and whispered her wish to learn to read, but said she could not because she walk to the well and back took her all day. Obei offered to teach her a little every day when she came for water. She started with: For God so loved the world.
A woman came with terror in her eyes and confided that her daughter must surely be a witch. Helene prayed for the girl, but also for the mother. Do not believe what others tell you, she warned the distraught mother. Believe in the power of God.
And Songa came. Obei and Helene had prayed with her before in Jesus name, and Songa had seen a miracle as her seriously ill son was healed. Now she too, was a follower of Christ. My husband ordered me to renounce Jesus, Songa told us. When I would not, he threw me out of the house, but he kept my children. Please, please pray for my little ones. Pray that they too will know the God of mercy and love.
This holiday season, I am thankful for the women at the well in Senegalall three of them, for Songa has joined the other two. Im thankful for the lives they are touching in the name of Jesus. Most of all, I am thankful for the Living Water that flows freely for every one of us.
Author Kay Marshall Strom has two great loves: writing and helping others achieve their own writing potential. Kay has written thirty-six published books, numerous magazine articles, and two screenplays. While mostly a nonfiction writer, the first book of her historical novel trilogy Grace in Africa has met with acclaim.
Kay speaks at seminars, retreats, writers conferences, and special events throughout the country and around the world. She is in wide demand as an instructor and keynote speaker at major writing conferences. She also enjoys speaking aboard cruise ships in exchange for exotic cruise destinations. Learn more about Kay at her website or contact:
Kathy Carlton Willis Communications
1324 S. 10th Street Raymondville, TX 78580
WillisWay@aol.com | kcwcomm@rgv.rr.com | 956-642-6319 | www.kathycarltonwillis.com
-------------------
Ever read stories like this and feel helpless. "What can I do about the lack of fresh water a world away?" Unrelated to the above book, I recently came across the Mocha Club. The idea is simple. You give up two "mochas" ($7) a month, and instead use that money to help someone a world away have access to fresh water and other life-saving aid! Find out more at https://www.mochaclub.org/how-it-works
Another great idea is The TreeWell Project, using the proceeds from Christmas tree sales to fund African wells. :)
And if you are looking for something to do with the abundance of leftover turkey from today's bounty, maybe substitute it for the chicken in this tasty recipe from noted author, Kay Marshall Strom. Her recent release, The Call of Zulina, is a novel with accurate historical details regarding slavery in Africa. Below is a recipe and first-hand recollection of Kay's own real-life interactions at the well in Africa.
-----------
LEMON CHICKEN SOUP SENEGAL, WEST AFRICA
This warm, mellow soup from Senegal, West Africa, can easily incorporate any extra turkey you have on hand. Just substitute it for the chicken.
You will need:
1 tablespoon butter
1 teaspoon curry powder
2 teaspoons flour
2 cups chicken broth
cup diced chicken (or turkey)
1 cup yogurt
juice of 1/2 fresh lemon
fresh chives, washed and snipped
Melt the butter in a saucepan over medium heat. Add the curry powder and flour and cook 2 minutes, stirring constantly. Gradually blend in the chicken broth and bring to a boil, continuing to stir constantly. Add diced chicken (or turkey).
Remove the kettle from the heat and cool the soup slightly. Gradually stir in the yogurt, a small amount at a time. Squeeze the juice from the lemon half and add the juice to the soup.
Garnish each bowl of soup with a dash of fresh chives.
The Women at the Well
by Kay Marshall Strom
In Senegal, West Africa, I sat beside the community well, because thats where the village women gathered. Out of the dusty wasteland they came, from every direction, their babies tied to their backs and their water containers balanced on their heads. They were glad to rest beside the well, for they had to walk many miles to get there. The average woman in the world, we are told, walks seven miles a day in her quest for water. When you factor in those of us who only walk to the kitchen to turn on the faucet, you can see that some must trek much farther than seven miles!
At the well, the women have a chance to catch up with the goings-on in neighboring villages, to air their complaints with one another, and to share their own news. And so I sat by the well with Obei and Helene, two Christian women in a country 98 percent Muslim, and waited to meet the women as they came for water.
And come they did.
A young woman came, sobbing over her baby son who was burning with fever. We prayed together in Jesus name that her baby would be healed.
A girl came and whispered her wish to learn to read, but said she could not because she walk to the well and back took her all day. Obei offered to teach her a little every day when she came for water. She started with: For God so loved the world.
A woman came with terror in her eyes and confided that her daughter must surely be a witch. Helene prayed for the girl, but also for the mother. Do not believe what others tell you, she warned the distraught mother. Believe in the power of God.
And Songa came. Obei and Helene had prayed with her before in Jesus name, and Songa had seen a miracle as her seriously ill son was healed. Now she too, was a follower of Christ. My husband ordered me to renounce Jesus, Songa told us. When I would not, he threw me out of the house, but he kept my children. Please, please pray for my little ones. Pray that they too will know the God of mercy and love.
This holiday season, I am thankful for the women at the well in Senegalall three of them, for Songa has joined the other two. Im thankful for the lives they are touching in the name of Jesus. Most of all, I am thankful for the Living Water that flows freely for every one of us.
Author Kay Marshall Strom has two great loves: writing and helping others achieve their own writing potential. Kay has written thirty-six published books, numerous magazine articles, and two screenplays. While mostly a nonfiction writer, the first book of her historical novel trilogy Grace in Africa has met with acclaim.
Kay speaks at seminars, retreats, writers conferences, and special events throughout the country and around the world. She is in wide demand as an instructor and keynote speaker at major writing conferences. She also enjoys speaking aboard cruise ships in exchange for exotic cruise destinations. Learn more about Kay at her website or contact:
Kathy Carlton Willis Communications
1324 S. 10th Street Raymondville, TX 78580
WillisWay@aol.com | kcwcomm@rgv.rr.com | 956-642-6319 | www.kathycarltonwillis.com
-------------------
Ever read stories like this and feel helpless. "What can I do about the lack of fresh water a world away?" Unrelated to the above book, I recently came across the Mocha Club. The idea is simple. You give up two "mochas" ($7) a month, and instead use that money to help someone a world away have access to fresh water and other life-saving aid! Find out more at https://www.mochaclub.org/how-it-works
Another great idea is The TreeWell Project, using the proceeds from Christmas tree sales to fund African wells. :)
Wednesday, November 11, 2009
Breast Cancer Support Resources
I must be honest and say upfront that I don't have personal experience with, nor even personal recommendations for, any of these resources. But having known several friends who have survived, and having the reality brought home even more personally as I've talked with chemo patients while visiting the hospital for weekly infusions, I have been searching for resources offering support through the battle of cancer. Many of the links here are specific to breast cancer (though some are general cancer support resources) as that is the journey many of my friends have faced. Simply by being born female, my "odds" are 1 in 8 of facing breast cancer at some point in my life as well.
If you know of other resources, especially ones from a Christian faith-based perspecitve, please share with me and my readers!!! I am also looking for resources available for other cancers, in general or specific kinds, as well.
Outreach of Hope Dave Dravecky's ministry "to serve suffering people, especially those with cancer and amputation, by offering resources for encouragement, comfort and hope through a personal relationship with Jesus Christ."
The Lydia Project "Spreading faith, hope and love to women facing cancer." This is a must-visit resource! I have a soft spot in my heart for women's ministries named after strong Biblical women, so this website caught my attention from the get-go. But when I realized what their ministry did, it brought me to tears. What beauty from ashes! I won't try to describe it, just go see for yourself.
An Uninvited Guest: One Woman's Journey from Cancer to Hope (book by Jeana Floyd)
Finding the Light in Cancer's Shadow: Hope, Humor, and Healing after Treatment (book by Lynn Eib)
Cancer: Longterm Survivorship Issues message board forum through the Rest Ministries Sunroom, offering supportive understanding and dedicated to issues of long-term cancer survival
Stepping into the Ring: Fighting for Hope Over Despair in the Battle Against Breast Cancer (book by Nicole Johnson)
Nicole Johnson has also written three short "pieces" on breast cancer that are well worth the time to read:
Stepping Into the Ring: Round 1
Stepping Into the Ring: Round 2
Stepping Into the Ring: Round 3
Laura Jensen Walker Christian breast cancer survivor and author of multiple books including Thanks for the Mammogram!: Fighting Cancer With Faith, Hope, and a Healthy Dose of Laughter
Lump to Laughter, "a ministry-driven, non-profit organization committed to conquering breast cancer and supporting those affected by it."
Cancer Resource List from Focus on the Family
Hope Navigators - Cancer Support Blog This resource is helpful for "burden bearers" longing to come alongside a friend with cancer, while the parent website offers resources for cancer fighters themselves.
Cancer Patient Advocate "is dedicated to helping people provide emotional and spiritual encouragement to patients and their caregivers, especially those facing cancer."
Breast Friends, "a non-profit organization dedicated to improving the quality of life for breast cancer patients." Please note that this resource does not seem to be faith-based and may or may not be "faith-friendly". I am adding it to my resource list because it does seem to offer extensive support information both to patients and their supporters.
Have a story or resource you want to share? Please let me know!
If you know of other resources, especially ones from a Christian faith-based perspecitve, please share with me and my readers!!! I am also looking for resources available for other cancers, in general or specific kinds, as well.
Outreach of Hope Dave Dravecky's ministry "to serve suffering people, especially those with cancer and amputation, by offering resources for encouragement, comfort and hope through a personal relationship with Jesus Christ."
The Lydia Project "Spreading faith, hope and love to women facing cancer." This is a must-visit resource! I have a soft spot in my heart for women's ministries named after strong Biblical women, so this website caught my attention from the get-go. But when I realized what their ministry did, it brought me to tears. What beauty from ashes! I won't try to describe it, just go see for yourself.
An Uninvited Guest: One Woman's Journey from Cancer to Hope (book by Jeana Floyd)
Finding the Light in Cancer's Shadow: Hope, Humor, and Healing after Treatment (book by Lynn Eib)
Cancer: Longterm Survivorship Issues message board forum through the Rest Ministries Sunroom, offering supportive understanding and dedicated to issues of long-term cancer survival
Stepping into the Ring: Fighting for Hope Over Despair in the Battle Against Breast Cancer (book by Nicole Johnson)
Nicole Johnson has also written three short "pieces" on breast cancer that are well worth the time to read:
Stepping Into the Ring: Round 1
Stepping Into the Ring: Round 2
Stepping Into the Ring: Round 3
Laura Jensen Walker Christian breast cancer survivor and author of multiple books including Thanks for the Mammogram!: Fighting Cancer With Faith, Hope, and a Healthy Dose of Laughter
Lump to Laughter, "a ministry-driven, non-profit organization committed to conquering breast cancer and supporting those affected by it."
Cancer Resource List from Focus on the Family
Hope Navigators - Cancer Support Blog This resource is helpful for "burden bearers" longing to come alongside a friend with cancer, while the parent website offers resources for cancer fighters themselves.
Cancer Patient Advocate "is dedicated to helping people provide emotional and spiritual encouragement to patients and their caregivers, especially those facing cancer."
Breast Friends, "a non-profit organization dedicated to improving the quality of life for breast cancer patients." Please note that this resource does not seem to be faith-based and may or may not be "faith-friendly". I am adding it to my resource list because it does seem to offer extensive support information both to patients and their supporters.
Have a story or resource you want to share? Please let me know!
Wednesday, October 21, 2009
Helping a Friend with Cancer
Nicole Johnson has put together a creative list of 15 Ways to Really Help a Friend With Cancer that's right on target. With October being Breast Cancer Awareness Month, her focus in on breast cancer, but the ideas suggested can really be applied to any kind of cancer and many other chronic illnesses as well. I've been blessed by some of these tips, such as a friend picking up my dirty laundry and returning it clean and folded, or another friend swinging by with a bag of grocery basics and the wonderful gift of paper plates!
Thursday, August 27, 2009
Lisa Copen, part 3
It has been a delight to share this ongoing conversation with Lisa Copen, founder of Invisible Illness Week, over these past three days. If you have missed the previous two parts of our conversation, please visit Tuesday's and Wednesday's post before coming back to join us here. :)
Lisa, we both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?
As you have been working to get out your message about National Invisible Chronic Illness Awarness, how have you seen blogs and twitter and other forms of social media make a difference, Lisa? Has social media increased how you've been able to reach more people this year to inform them about Invisible Illness Week?
How can people get involved with Invisible Illness Week and find out more information?
Lisa, as always, it has been a delight chatting with you. I'm praying for you and for all the men and women in need of support like the kind they will find at the virtual conference next month! I'm looking forward to sharing with you voice-to-voice at noon on Sept. 15 as we talk about Coping with Crisis on top of Chronic and I'm so excited by the descriptions of all the different conference sessions and great speakers lined up this year!
Lisa, we both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?
LC: Honestly, if I could just sit beside them and give them a long gentle hug I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need.
Secondly, I would also validate that they are right--no one really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can't drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness Twitters to connect people who Twitter about illness or health issues.
Lastly, my faith in the Lord is the foundation of how I cope with my illness, and so I couldn't walk away without at least encouraging them to give God a try. They may have had some negative experiences in the past with a church or Christians, but people are not perfect, and God really does have a plan for their life. And it's God's "Plan A." The illness hasn't bumped their life down to "Plan B." I can admit that this sounds cliche. But each day I hear from people who tell me about how their faith in God is the one thing that gets them up the morning and keeps them looking forward to the next day, rather than dreading it.
As you have been working to get out your message about National Invisible Chronic Illness Awarness, how have you seen blogs and twitter and other forms of social media make a difference, Lisa? Has social media increased how you've been able to reach more people this year to inform them about Invisible Illness Week?
LC: Absolutely. Exponentially! For example we've done a series of tweets on 20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!
We have over 1600 people who have joined our cause on Facebook. And we are giving away prizes to people involved in these different areas of outreach.
How can people get involved with Invisible Illness Week and find out more information?
LC: Thanks for asking! Just helping us spread the word, for example, reading and sharing about this blog post, is the perfect start to be a part of our grassroots cause. I don't have to tell you that we don't have a marketing budget! I hope people know that they are making a difference just by introducing other people to our virtual conference. And not just those who are ill, but spouses, parents, caregivers. Everyone knows someone who is ill. You can find everything about the week at our web site National Invisible Chronic Illness Awareness Week, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" and awareness pins.
Our theme this year is "A Little Help Gives a Lot of Hope."
We also are looking for bloggers who would like to be a guest blogger on our web site. Or you can just sign up to commit to blogging about invisible illness and Invisible Illness Week on your own blog through Bloggers Unite. We have a Facebook Cause page of course, so it's easy to share with friends and family. Share the video, the twitter "illness facts" we are sending out, things like that. Be sure to mention Invisible Illness Week to your counselor, doctor, pastor, peers, colleagues; we have brochures too.
Some people use this week as an opportunity to call their local paper and share about the week, their support group and their illness, and get featured in a story. Since it's listed in Chase's Annual Events journalists can tie it together.
Lisa, as always, it has been a delight chatting with you. I'm praying for you and for all the men and women in need of support like the kind they will find at the virtual conference next month! I'm looking forward to sharing with you voice-to-voice at noon on Sept. 15 as we talk about Coping with Crisis on top of Chronic and I'm so excited by the descriptions of all the different conference sessions and great speakers lined up this year!
Wednesday, August 26, 2009
Lisa Copen, part 2
Yesterday I had the joy of introducing you to my friend Lisa and her work as the founder of National Invisible Chronic Illness Awareness Week (NICIAW). If you haven't yet had a chance to read part one of our conversation, please take a moment to revisit yesterday's post before picking up with us here. :)
Lisa, what was it that made you see Invisible Illness Week as necessary? Why did you start this?
This sounds familiar. I've heard many people say this.
So you decided to start Invisible Illness Week and address some of these issues?
What illness is it that you have, Lisa?
Beyond the grace of God, what personally fuels your "grace tank", the driving force that enables you to keep giving of yourself even when exhausted beyond description and living in pain?
I heard that you type with just a few fingers.
Even with your limited typing abilities, you have written several books including one that gives 505 ideas on how people can reach out to someone who is ill, right?
That's a great idea. I would think that it would be a lot easier to accept help from someone if it came in the form of a gift certificate.
Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges you are also a wife and mom. I know it can't be easy to try to do all that you do.
Please join Lisa and I for the conclusion of this conversation tomorrow, where you will learn specific information about how to participate in the encouragement of NICIAW and the 20-session free virtual conference!
Lisa, what was it that made you see Invisible Illness Week as necessary? Why did you start this?
LC: Well, a few reasons. I began Rest Ministries in 1997. It's a Christian organization that serves those who live with chronic illness and the sponsor of Invisible Illness Week. I kept seeing many people who felt very alone, misunderstood, and frustrated, feeling that their illness, pain, and suffering were completely invalidated. Some people have a spouse who even doubts the existence of an illness.
I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just didn't understand illness or how to respond to it.
The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.
This sounds familiar. I've heard many people say this.
LC: It does, doesn't it? Even those of us who cope rather well with our illness on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, "So are you all better now?" People don't always comprehend the difference between being sick and being chronically ill.
So you decided to start Invisible Illness Week and address some of these issues?
LC: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.
It doesn't really matter what our illness is, where we may live, our age, or how long ago we receIved a diagnosis, etc. The truth is, most of our illnesses are invisible and the fact that a healthy person is unable to see the symptoms we experience or the physical pain provides us with a lot more in common with one another in the similarities of our illness ever could. Once we get start talking about the emotions behind our illness we find out we are not nearly as different as we may have originally assumed.
What illness is it that you have, Lisa?
LC: Rheumatoid arthritis is my main chronic illness that I cope with on a daily basis. I received my diagnosis in 1993 when I was 24 years old. At a few years after that I started having symptoms of fibromyalgia and later receIved a diagnosis. Unfortunately, I have not ever experienced remission which is what all the doctors hoped for. So the last eight years has been a challenge as disease has progressed. I realize in many ways I am blessed and could be worse off than I am now and yet in the last couple of years my illness is becoming more and more visible rather than invisible.
I don't just cope with daily pain now, but I struggle to do everyday tasks such as unloading the dishwasher or driving because my hands and feet are becoming more significantly deformed. I am on all of the medications that you can imagine to try to slow the progression of the disease down but the last year has brought me into a new season and I have many surgeries that will need to be scheduled in the near future to keep any mobility I have.
Beyond the grace of God, what personally fuels your "grace tank", the driving force that enables you to keep giving of yourself even when exhausted beyond description and living in pain?
My husband is a gem and I couldn’t do any ministry without his support. And not just emotional support, but doing the dishes, the laundry, meals sometimes, taking care of our son, and more. My son is 6 and he makes me laugh. When you are trying to explain the Lord to a 6-year-old you learn a lot of lessons yourself all over again. I also go to bed early and read a lot. I will read my Bible on my Kindle and then I love to end the evening reading some good fiction. It takes me away for awhile. A lot of times I may end up back out of bed by 12:30 a.m., but I try to at least get to bed by 9 or 10 and have some quiet time.
I heard that you type with just a few fingers.
LC: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but I usually want to talk too fast and it can't keep up.
Even with your limited typing abilities, you have written several books including one that gives 505 ideas on how people can reach out to someone who is ill, right?
LC: Yes! It's called Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend; It's actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creatIve and memorable ways to show someone you care. We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them. JOY stand for "Just Offering You" and one can fill out what they are able to offer (errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.
That's a great idea. I would think that it would be a lot easier to accept help from someone if it came in the form of a gift certificate.
LC: I think so. The cards are great for a support group, a womens ministry, or really anyone who wants a light-hearted way of saying, "I'd love to help. Here is what I am able to do."
Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges you are also a wife and mom. I know it can't be easy to try to do all that you do.
LC: Honestly, it's not, but it has always kept me going too and I couldn't do it without my husband's support. Thank you for hosting me at your blog this week. I hope all of your readers will visit us at National Invisible Chronic Illness Awareness Week and let your friends know about our free 5-day virtual conference! We're going to have a great time!
Please join Lisa and I for the conclusion of this conversation tomorrow, where you will learn specific information about how to participate in the encouragement of NICIAW and the 20-session free virtual conference!
Friday, August 21, 2009
Coping With Crisis on Top of Chronic, part 1
This is "part 1" of a 2-part series of notes for a radio program on Coping with Crises on Top of Chronic; Chat with 2 Gals Who Understand where Lisa Copen and I chatted for National Invisible Chronic Illness Awareness Week. For "part 2" of these notes, follow the link at the end of this message.
A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week. Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.
My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next. If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!
My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn't want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row. As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!
Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all? Life doesn't just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise "extras" that come along?
I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:
1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.
There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.
On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.
2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.
Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.
Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.
3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!
Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.
OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.
Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah's Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.
I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I'm always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!
For more on this topic, join Lisa Copen and I as we talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn't stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we'll look forward to chatting with you as you call in your own crisis on top of chronic stories too.
Go to HarvestingHope.blogspot.com/2009/09/crisis-chronic-2.html for "part two" of these notes or listen to the radio program at http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand.
A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week. Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.
My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next. If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!
My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn't want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row. As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!
Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all? Life doesn't just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise "extras" that come along?
I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:
1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.
There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.
On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.
2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.
Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.
Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.
3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!
Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.
OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.
Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah's Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.
I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I'm always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!
For more on this topic, join Lisa Copen and I as we talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn't stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we'll look forward to chatting with you as you call in your own crisis on top of chronic stories too.
Go to HarvestingHope.blogspot.com/2009/09/crisis-chronic-2.html for "part two" of these notes or listen to the radio program at http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand.
Thursday, August 20, 2009
Will You Help Me Dance? (Chronic Fatigue Syndrome)
I've lived with a serious, disabling and chronic neuro immune illness called Chronic Fatigue Syndrome (CFS) for the past 19 years. This illness goes by many names including Post-Infectious Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and in the past was known as chronic Epstein-Barr virus (CEBV). You can find out more and learn the answers to questions such as, "What is ME/CFS?" or "Is it contagious?" by visiting the FAQs at the Whittemore Peterson Institute's website.
The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.
Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!
Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?
The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.
Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!
Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?
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