Christine, creator of The Spoon Theory, gives voice to the two sides of living with chronic illness, the face everyone sees in public compared with daily reality we don't often let others see:
My Secret Is Safe With Me
Friday, November 21, 2008
Sunday, September 21, 2008
When All is Stripped Away
The following blog entry was first written last April for my Inner Beauty Girlz blog. If you are struggling with things you wish you could accomplish but running up against limitations, I pray that it will be a blessing to you today. I thought to repost it because I have been feeling much of the same discouragement lately and after reading The Crippled Lamb
to my daughter as I tucked her in for bed tonight, I was once again encouraged. That story never fails to uplift me!
-------
Sitting in church a couple of weeks ago I was simply too tired to stand for the singing time. This isn't at all uncommon - I sit through music time more often than I'm able to stand. (There were years when I rarely could leave the house to attend church at all, so just being able to be there is HUGE!) But as I am sitting I am usually singing and Signing (Sign Language) and stiving to give my whole heart over to worship.
Unfortunately, I started having asthma attacks about 3 years ago and I've found singing to be a frequent trigger. So on weeks when I can't sing either, I grab my inhailer, stop the asthma attack in its tracks, and consentrate on joining in musical worship through Sign. Recently I've found my arms to "heavy" and the pain too instense even to Sign consistantly. So a couple of weeks ago I sat there in church feeling very dejected and asking the Lord what I had left to give. How I could participate in corporate worship when I had nothing left to offer, no strenght to stand, no breath to sing, no ability to even lift my hands in praise?
Though not the song being sung that morning, He immediately reminded me of the words of Matt Redman's song, "The Heart of Worship" (view on uTube link below). A few of the lines are:
When the music fades, all is stripped away, and I simply come
Longing just to bring something that’s of worth that will bless your heart...
I’m coming back to the heart of worship, and it’s all about You, Jesus...
What a great reminder that everything else is external (physical strength, the gifts of voice and hands, every breath I draw) but true worship, like true beauty, is internal. When everything else is stripped away, I am still of worth, I can still be whole, because of who Jesus Christ is. He is worthy of all I am, all I have to offer, even when my offerings are meager.
"The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise." Psalm 51:17 (NIV)
If you or someone you love is struggling with health issues, check out Rest Ministries, a wonderful organization providing support and encourgement in the face of any and every kind of chronic health challenge. This group was started by a friend of mine and has grown into an international ministry offering local support group chapters, a print magazine and many forms of online support including daily email devotionals, message bords and much more.
(If you are reading this via email and can't view the video, be sure to drop by the Given Me a Thorn Blog to see this beautiful video for yourself.)
"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever."
- Psalm 73:26 (New International Version)
to my daughter as I tucked her in for bed tonight, I was once again encouraged. That story never fails to uplift me!-------
Sitting in church a couple of weeks ago I was simply too tired to stand for the singing time. This isn't at all uncommon - I sit through music time more often than I'm able to stand. (There were years when I rarely could leave the house to attend church at all, so just being able to be there is HUGE!) But as I am sitting I am usually singing and Signing (Sign Language) and stiving to give my whole heart over to worship.
Unfortunately, I started having asthma attacks about 3 years ago and I've found singing to be a frequent trigger. So on weeks when I can't sing either, I grab my inhailer, stop the asthma attack in its tracks, and consentrate on joining in musical worship through Sign. Recently I've found my arms to "heavy" and the pain too instense even to Sign consistantly. So a couple of weeks ago I sat there in church feeling very dejected and asking the Lord what I had left to give. How I could participate in corporate worship when I had nothing left to offer, no strenght to stand, no breath to sing, no ability to even lift my hands in praise?
Though not the song being sung that morning, He immediately reminded me of the words of Matt Redman's song, "The Heart of Worship" (view on uTube link below). A few of the lines are:
Longing just to bring something that’s of worth that will bless your heart...
I’m coming back to the heart of worship, and it’s all about You, Jesus...
What a great reminder that everything else is external (physical strength, the gifts of voice and hands, every breath I draw) but true worship, like true beauty, is internal. When everything else is stripped away, I am still of worth, I can still be whole, because of who Jesus Christ is. He is worthy of all I am, all I have to offer, even when my offerings are meager.
"The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise." Psalm 51:17 (NIV)
If you or someone you love is struggling with health issues, check out Rest Ministries, a wonderful organization providing support and encourgement in the face of any and every kind of chronic health challenge. This group was started by a friend of mine and has grown into an international ministry offering local support group chapters, a print magazine and many forms of online support including daily email devotionals, message bords and much more.
(If you are reading this via email and can't view the video, be sure to drop by the Given Me a Thorn Blog to see this beautiful video for yourself.)
"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever."
- Psalm 73:26 (New International Version)
Tuesday, September 9, 2008
BlogTalk Radio link - Medications, Illness, Fertility, Desire for Motherhood
I've been talking about National Invisible Chronic Illness Awareness Week since my very first post here. Well, NICIAW is finally upon us and I had the joy of talking about Medication, Illness, Fertility and the Desire for Motherhood with Rest Ministries founder, Lisa Copen this afternoon. If you missed the live broadcase, please turn in to the archived program at www.blogtalkradio.com/invisibleillnessconf/2008/09/09/Medications-Illness-Fertility-and-the-Desire-for-Motherhood.
Thursday, September 4, 2008
My "Other" Illness
I am a mid-30s, homeschooling mom of three energetic children. To look at me you would never guess that I’ve lived with invisible chronic illness since my teen years. I “look” perfectly normal. Chronic low-grade fevers give my cheeks a rosy glow. I usually take great care in the way I dress and apply makeup because feeling bad is hard enough, I really don’t want to “look the part” too. And no, you’ve probably never seen me on a really bad day because if I can’t get out of the house, or even out of bed, well you don’t see me out and about on those days!
There are occasions when my illness refuses to remain invisible, like when I gratefully pull into a handicap parking spot, relieved for every single step I can cut from my errands as I stagger under debilitating exhaustion or when each step sends searing pain through my body. Or maybe it is still invisible even then, because I sure get some strange looks as I climb out of the van and unload my three, none of us in obvious need of that blue license plate! I can understand the confusion on their faces, for even my closest friends don’t realize what I’m facing until I share with them my daily reality. Still my heart stings to think those parking lot strangers might believe I’m abusing a privilege that I anything but take for granted!
I could claim many labels including Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomelitis (ME), fibromyalgia (FM), human herpesvirus six (HHV-6), multiple chemical sensitivities (MCS), Temporomandibular Joint (TMJ) and several others. But today it isn’t my severe and persistent fatigue, tender/swollen lymph glands, impaired memory and concentration, headaches, sleep disturbances, sore throat, joint or muscle pain that I’m here to talk about. Today I want to share about the heartache of my “other” invisible illness…
Infertility. Yes, I know I introduced myself as a mom of three. And yes, they are all our biological offspring. I’m still in awe to have three precious miracles, spaced almost exactly three years apart each time. No one would guess that it took us seven years, one confirmed (and several suspected) miscarriage(s) and much medical aid to have our first; another two years, two miscarriages, extensive surgery and medication to conceive the second; or that between the three pregnancies I spent 26 weeks on bedrest fighting to carry them each close enough to term to give them a chance at healthy, live birth.
You would never know, looking at these three, that not only do they have multiple siblings awaiting them in Heaven due to my miscarriages, but that we also tried to build our family through adoption seven different times. Each time we were left with empty arms and broken hearts. Adoption is a wonderful experience that I still hope God may someday have in store for our family, but for many reasons it is certainly not an “easy answer” to infertility!
While many people think of infertility as simply the inability to have children, this invisible chronic health concern often impacts much more than just reproductive organs. For women, endometriosis, polycystic ovarian syndrome (PCOS), and multiple other causes of infertility can lead to debilitating pain, extreme cycle irregularity with hormonal imbalances that can significantly impact insulin levels, weight, emotional stability, and greatly increase cancer risks. Deep cystic acne, excessive hair growth (in all the wrong places), and increased chance of miscarriage should conception ever occur, are also all concerns linked to certain causes of infertility. While I am a mom of three living miracles now, many of the medical issues surrounding our years of barrenness remain daily concerns for my current and long-term health picture. A couple’s infertility is just as often due to male-factor causes as female ones, and men also face unique health issues as a result of reproductive challenges.
Infertility isn’t just “not being able to get pregnant.” It is a medical condition that is almost always invisible, and as you might imagine, can become extremely complicated to manage for those of us who also face other chronic health conditions, as one set of medications and side-effects interacts with another! Just as any other chronic health challenge cannot be wished away, infertility is not simply solved by “relaxing” or going on vacation or having my husband wear boxer shorts. Studies have shown that the stress and depth of grief experienced by many infertile couples is parallel to that of cancer patients. So next time you are in a social setting and trying to get to know a new friend, why not open with, “Tell me about yourself,” rather than asking the question dreaded by every infertile woman, “Do you have any kids?”
I’m so thankful to be involved in National Invisible Chronic Illness Awareness Week because I can’t always tell someone’s story just by looking at what seems to be the obvious! As we all become more aware of one another’s struggles, hopefully we can become a more caring and compassionate people.
-----------------------
Jennifer Saake has lived with endometriosis since puberty and fibromyalgia since high school. She experienced the dramatic onset of CFIDS/ME her freshman year in college, 18 years ago this September. [Updated to add: Jenni finally discovered the root cause of her illness in October, 2009 with the diagnosis of the retrovirus XMRV.] After dropping out of school and spending most of the next two years in bed, she married her sweetheart, Rick, who saw her as more than just an illness. Together they struggled to grow their family through a decade of infertility and multiple losses, including the diagnosis of both Endometriosis and PCOS with insulin resistance.
Jenni is the co-founder and Director Emertis of Hannah's Prayer Ministires, an international support ministry for families facing fertility challenges, and is the author of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss
(NavPress, 2005).
http://www.HarvestingHope.blogspot.com
http://www.HannahsHopeBook.com and accompanying blog at http://www.HannahsHopeBook.blogspot.com
Hannah's Prayer Ministires at http://www.Hannah.org
There are occasions when my illness refuses to remain invisible, like when I gratefully pull into a handicap parking spot, relieved for every single step I can cut from my errands as I stagger under debilitating exhaustion or when each step sends searing pain through my body. Or maybe it is still invisible even then, because I sure get some strange looks as I climb out of the van and unload my three, none of us in obvious need of that blue license plate! I can understand the confusion on their faces, for even my closest friends don’t realize what I’m facing until I share with them my daily reality. Still my heart stings to think those parking lot strangers might believe I’m abusing a privilege that I anything but take for granted!
I could claim many labels including Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomelitis (ME), fibromyalgia (FM), human herpesvirus six (HHV-6), multiple chemical sensitivities (MCS), Temporomandibular Joint (TMJ) and several others. But today it isn’t my severe and persistent fatigue, tender/swollen lymph glands, impaired memory and concentration, headaches, sleep disturbances, sore throat, joint or muscle pain that I’m here to talk about. Today I want to share about the heartache of my “other” invisible illness…
Infertility. Yes, I know I introduced myself as a mom of three. And yes, they are all our biological offspring. I’m still in awe to have three precious miracles, spaced almost exactly three years apart each time. No one would guess that it took us seven years, one confirmed (and several suspected) miscarriage(s) and much medical aid to have our first; another two years, two miscarriages, extensive surgery and medication to conceive the second; or that between the three pregnancies I spent 26 weeks on bedrest fighting to carry them each close enough to term to give them a chance at healthy, live birth.
You would never know, looking at these three, that not only do they have multiple siblings awaiting them in Heaven due to my miscarriages, but that we also tried to build our family through adoption seven different times. Each time we were left with empty arms and broken hearts. Adoption is a wonderful experience that I still hope God may someday have in store for our family, but for many reasons it is certainly not an “easy answer” to infertility!
While many people think of infertility as simply the inability to have children, this invisible chronic health concern often impacts much more than just reproductive organs. For women, endometriosis, polycystic ovarian syndrome (PCOS), and multiple other causes of infertility can lead to debilitating pain, extreme cycle irregularity with hormonal imbalances that can significantly impact insulin levels, weight, emotional stability, and greatly increase cancer risks. Deep cystic acne, excessive hair growth (in all the wrong places), and increased chance of miscarriage should conception ever occur, are also all concerns linked to certain causes of infertility. While I am a mom of three living miracles now, many of the medical issues surrounding our years of barrenness remain daily concerns for my current and long-term health picture. A couple’s infertility is just as often due to male-factor causes as female ones, and men also face unique health issues as a result of reproductive challenges.
Infertility isn’t just “not being able to get pregnant.” It is a medical condition that is almost always invisible, and as you might imagine, can become extremely complicated to manage for those of us who also face other chronic health conditions, as one set of medications and side-effects interacts with another! Just as any other chronic health challenge cannot be wished away, infertility is not simply solved by “relaxing” or going on vacation or having my husband wear boxer shorts. Studies have shown that the stress and depth of grief experienced by many infertile couples is parallel to that of cancer patients. So next time you are in a social setting and trying to get to know a new friend, why not open with, “Tell me about yourself,” rather than asking the question dreaded by every infertile woman, “Do you have any kids?”
I’m so thankful to be involved in National Invisible Chronic Illness Awareness Week because I can’t always tell someone’s story just by looking at what seems to be the obvious! As we all become more aware of one another’s struggles, hopefully we can become a more caring and compassionate people.
-----------------------
Jennifer Saake has lived with endometriosis since puberty and fibromyalgia since high school. She experienced the dramatic onset of CFIDS/ME her freshman year in college, 18 years ago this September. [Updated to add: Jenni finally discovered the root cause of her illness in October, 2009 with the diagnosis of the retrovirus XMRV.] After dropping out of school and spending most of the next two years in bed, she married her sweetheart, Rick, who saw her as more than just an illness. Together they struggled to grow their family through a decade of infertility and multiple losses, including the diagnosis of both Endometriosis and PCOS with insulin resistance.
Jenni is the co-founder and Director Emertis of Hannah's Prayer Ministires, an international support ministry for families facing fertility challenges, and is the author of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss
(NavPress, 2005).http://www.HarvestingHope.blogspot.com
http://www.HannahsHopeBook.com and accompanying blog at http://www.HannahsHopeBook.blogspot.com
Hannah's Prayer Ministires at http://www.Hannah.org
Wednesday, September 3, 2008
I'll be on blog radio next week!
Press Release:
Christian Organization Unites the Millions Who Live with Invisible Illness
Contact: Lisa Copen, Rest Ministries, 858-486-4685, rest@restministries.org
MEDIA ADVISORY, Sept. 3 /Christian Newswire/ -- Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of the illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, an affiliate of Joni Eareckson Tada's International Disability Ministry, is encouraging those with illness, as well and family, caregivers, and churches through their annual outreach event, National Invisible Chronic Illness Awareness Week, September 8-14, 2008.
This year the week features 20 workshops with well-known guest speakers who will be presenting and answering questions via Blog Talk Radio, September 8-12.
Speakers include:
• Leslie Vernick, author of The Emotionally Destructive Relationship (Harvest House, 2007)
• Julie-Allyson Ieron, author of The Overwhelmed Woman's Guide to Caring for Aging Parents (Moody, 2008)
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Jennifer Saake, author of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005) [Details on how to listen/join in this program are posted at Invisible Illness Week Conference Info. Jenni's session on "Medications, Illness, Fertility and the Desire for Motherhood" will air Tuesday, Sept 9, 12 p.m. Pacific.]
Lisa Copen, 39, founder of Rest Ministries says, "Since we began in 1997 we've found that despite the strong foundation Christians may have, illness can rock it. Feeling like no one understands how much your life has changed since a diagnosis can be more spiritually detrimental than the illness itself. It can make one feel isolated, misunderstood and even bitter."
Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four explains why Invisible Illness week matters. "Those with illness do have to accept that other people aren't going to 'get it.' Only God understands. But it's nice to encourage peers and find strength in validating the mixed emotions. You don't have to explain why walking twenty feet may be impossible some days."
Rest Ministries extends their outreach about illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.
Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, "It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. Rest Ministries is dedicated to educating churches to not only serve the chronically ill, but to involve them in the church body. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week."
Get involved by joining the hundreds of people who will blog about invisible illness on September 8th, attend a seminar, or tell someone who has an illness about the event. Typically, people with illness are unable to attend a traditional conference, so a "virtual conference" is widely anticipated. All seminars will also be recorded and archived.
See www.invisibleillness.com. Rest Ministries is at www.restministries.org.
*Source: Chronic Care in America, U.S. Census Bureau
-------------------------
Press Release written by:
Lisa Copen
Rest Ministries, Director
HopeKeepers Magazine, Editor
National Invisible Chronic Illness Awareness Week
Founder & Coordinator
“HOPE CAN GROW FROM THE SOIL OF ILLNESS!”
This is the theme of 2008’s National Invisible
Chronic Illness Awareness Week in September.
Drop by and find out ways to encourage a
friend, be encouraged yourself, and spread the word.
http://www.InvisibleIllness.com and our blog
http://www.InvisibleIllness.Wordpress.com
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