Posts
Saturday, October 3, 2009
Our Vacation
I've posted daily updates from our trip at http://classicRVadventures.blogspot.com/. Would love to have you "journey along" with us and leave your comments, maybe with childhood memories of your own. :)
Friday, September 25, 2009
IVIG 8
Just home from 8 hours at the infusion center! UGGG My longest infusion ever. Don't think my body liked the fact that I was doing infusions just 5 days apart instead of the regular 7 and we had to take it dreadfully slow, even with all the benadryl, oxygen, etc. Exhausted and headed to bed.
We are supposed to pick up the RV tomorrow, but I'm not nearly done packing, so we won't be leaving town until Sunday.
We are supposed to pick up the RV tomorrow, but I'm not nearly done packing, so we won't be leaving town until Sunday.
Monday, September 21, 2009
IVs, Stanford, travel, homeschool, Dance fundraiser
Wow! I just keep falling farther behind in posting health updates, so I'll do a quick overview and you can skim for the topics that interest you most. Each topic here probably should be it's own blog post, but I'm just not up to that, so I'll bold the topics and you can pick and choose what you read. :)
Weekly IVs 5 and 6
I've had 3 more IVIG infusions since I last posted about them in any detail, infusions number 5, 6 and 7. The 5th and 6th both went amazingly well. We thought we had found just the right combination of things to keep me from being reactive:
- IV drip of normal sailine during entire transfusion:
- 50 mg benadryl beforehand
- excedrin beforehand
- oxygen during the entire infusion
Both infusions done with this combination were over in only 2 - 2 1/2 hours with only minor discomforts!!!
PICC line issues
Then my PICC line decided it needed to start bleeding this week. I went in for midweek dressing changes on both Thursday and Saturday with blood dripping down my arm. Not fun. :( Thankful the PICC continues to be serving its purpose well and there is no sign of infection. The skin around it is getting rather chapped from the dressing changes, but we packed it really well with the weight of a heavy sandbag after yesterday's dressing change, and so far no signs of leakage yet today. (It had begun oozing last Monday morning after the IVIG #6 infusion on the prior day.) Hopefully we are past all that now.
Yesterday's IVIG (#7)
Well, maybe you caught onto the fact that I only mentioned 2 of the 3 past IVs going so well and that we had thought we had the right concoction? Yesterday we got there (Rick has a tummy bug, so my parents took me) and had a different nurse than we had for two prior treatments. Gave her the rundown on what was working and she informs us that IVIG is never to be dosed in conjunction with anyting else, including saline. Saline can interupt some of the effectiveness of the IVIG. Uggg.
So she agrees to give me a heafty dose of saline before hand to get me really hydrated, still lets us do all the other stuff, and will follow-up the IG with more saline, but even pulls out the fine print on the package paperwork and points out that she can't run the saline with the IG. I actually did realatively well with no dramatic reactions, but it made for another LONG infusion, getting there at 1:30 and barely finishing up before they turned out the lights at 7PM! Mom stayed with me the whole time so it was nice to have the company, but it was discouraging that after we thought we had it all figure out, we had to take such a backward step. Thankfully though, still no major reactions, so I'm striving to be content in that. And despite all the frustration and inconvience, I am beyond thankful to be receiving this treatment and life-giving medication at all!!!
Our trip to Stanford
I guess it's already been two weeks since our trip to Stanford. We left early on a Monday morning, after just having had the IVIG the afternoon before. I was throwing up by the time we reached Auburn (about 2 hours drive) even with a double dose of motion sickness meds and my pressure point "sea bands". I was very uncomfortable and exhausted. Fell into bed as soon as we got to the hotel and only got up again for a quick dinner. My family went sightseeing on Tuesday so I had the quiet hotel room to myself and slept a good portion of Tudsay and quietly read between naps - that felt wonderful to have such quiet!
Wednesday morning we had to be to Stanford by 8AM. Dr. Montoya didn't make it in to see us until about 9:30, but then he spent a full hour and a half with us! We were stunned that he took so much time. We really didn't learn anything new there, basically just confirmed that everything we had already been doing with Dr. Peterson was exactly what he also felt we should be doing. I guess our main "take away" from that appointment was Rick's better understanding of how stress negatively impacts my body and how basically anything and everything can cause some level of stress in either the emotional, mental or physical areas and that we need to limit as much of any type of these as we can. We came home and had to take a hard look at our lives and have cut out many commitments this year. As I posted in my Cutting Back thread, that includes my time spent on the internet.
I did better on the trip home, but have had a hard time getting out of bed each morning since the trip and my muscle twitching that had noticably diminished since starting the IVIG treatments has come back pretty significantly ever since the trip. That kind of travel is just SO hard on me. It's ironic that I'm told to "cut stress" but in order to get that advice my insurance sends me on a trip that is very stressful on my body!
I Hope You Dance fundraiser
Our highlight of last week was getting to attend the Whittemore Peterson Institue's I Hope You Dance fundraiser. Thank you, again, to all who enabled us to attend!!! I went in my wheelchair and did great for the first part of the program, but with so much stimulation (music, 500 people eating and talking, lights, sounds) I was pretty overwhelmed after about the first speaker. We did hear some very exciting things about upcoming announcements on Chronic Fatigue Syndrome research, so keep your ears open to the news in mid/late October when significant medical reasearch hits press release stage. I'm so hopeful about what's unfolding right here in Reno!
Homeschooling
We are still homeschooling this year. People ask me how we do it with my illness, and my answer remains that I simply cannot immagine trying to do a traditional school schedule with this illness! We have a flexable schedule, can start as late in the day as my health dictates, we can "bedschool" whenever we need to and I don't have to pack lunches or drive carpools. When you throw homework into the mix, I figure I would be putting just about as much effort into "schooling" my kids at the end of the day when everyone's already spent as I already do when I have the joy of working with them fresh in the day. So for me, homeschooling's really the only viable option I see right now, and I've very thankful for the opportunity to learn with my kids each day!
We are using My Father's World with Big J. in 5th grade, R in 1st. and Little J. still just coming along for the ride. :) The kids are also involved in Eagle Co-op and loving their classes there!
RV Trip
This week's going to be interesting. Rick's got a tummy bug, I'm trying to get back on my feet from yesterday's IV, then my next IV actually comes around on Friday morning. (I typically start feeling "better" from an IV about Thursday, so this week there won't be much room for rebound.) On Saturday we pick up our RV for our long-awaited family vacation. This has been in the planning for many months, since long before IVs or the Stanford trip or anything else and will be our first ever family vacation with all five of us and no one else. We are excited, but I must admit to feeling nervous too. This week Rick will do all the shopping while I work on packing. (Both my mom and a friend have offered to come help with the packing and I'm definately taking them up on their offer!)
I'm so praying this will be a time of wonderful family memories and that Rick and I will be able to be a true blessing to our kids next week without compromising my health farther. It's one of those decisions that we know comes with risk, and yet it's a choice we are making based on the needs of our whole family, for once not just making our family flex and stretch around my health limitations as they so regularly must do. We are going by RV so that I can rest in bed as much as I need to during the travel time and we are keeping our plans very simple, intentionally not trying to fit in visits with friends along the way or pushing through an activity-laden agenda. We'll be packing ready-to-eat foods and will do our best to simply "be" and focus on enjoying one another. Feel free to follow our adventures on our travel blog next week.
I'm praying my handcap license tag gets here this week. (I've had a plate for years, but as we won't be taking our van, I won't have handicap parking access if the window hanger tag doesn't come on time.) We realized on our trip to Stanford (Rick's parents drove us, so not our own vehicle) how important this tag would be for our trip, so my primary care doctor requested it for us the very next day. After her knee replacement surgery my mom had her tag within a week, so I'm hopeful it will come on time. Would you please join me in this specific prayer request?
Weekly IVs 5 and 6
I've had 3 more IVIG infusions since I last posted about them in any detail, infusions number 5, 6 and 7. The 5th and 6th both went amazingly well. We thought we had found just the right combination of things to keep me from being reactive:
- IV drip of normal sailine during entire transfusion:
- 50 mg benadryl beforehand
- excedrin beforehand
- oxygen during the entire infusion
Both infusions done with this combination were over in only 2 - 2 1/2 hours with only minor discomforts!!!
PICC line issues
Then my PICC line decided it needed to start bleeding this week. I went in for midweek dressing changes on both Thursday and Saturday with blood dripping down my arm. Not fun. :( Thankful the PICC continues to be serving its purpose well and there is no sign of infection. The skin around it is getting rather chapped from the dressing changes, but we packed it really well with the weight of a heavy sandbag after yesterday's dressing change, and so far no signs of leakage yet today. (It had begun oozing last Monday morning after the IVIG #6 infusion on the prior day.) Hopefully we are past all that now.
Yesterday's IVIG (#7)
Well, maybe you caught onto the fact that I only mentioned 2 of the 3 past IVs going so well and that we had thought we had the right concoction? Yesterday we got there (Rick has a tummy bug, so my parents took me) and had a different nurse than we had for two prior treatments. Gave her the rundown on what was working and she informs us that IVIG is never to be dosed in conjunction with anyting else, including saline. Saline can interupt some of the effectiveness of the IVIG. Uggg.
So she agrees to give me a heafty dose of saline before hand to get me really hydrated, still lets us do all the other stuff, and will follow-up the IG with more saline, but even pulls out the fine print on the package paperwork and points out that she can't run the saline with the IG. I actually did realatively well with no dramatic reactions, but it made for another LONG infusion, getting there at 1:30 and barely finishing up before they turned out the lights at 7PM! Mom stayed with me the whole time so it was nice to have the company, but it was discouraging that after we thought we had it all figure out, we had to take such a backward step. Thankfully though, still no major reactions, so I'm striving to be content in that. And despite all the frustration and inconvience, I am beyond thankful to be receiving this treatment and life-giving medication at all!!!
Our trip to Stanford
I guess it's already been two weeks since our trip to Stanford. We left early on a Monday morning, after just having had the IVIG the afternoon before. I was throwing up by the time we reached Auburn (about 2 hours drive) even with a double dose of motion sickness meds and my pressure point "sea bands". I was very uncomfortable and exhausted. Fell into bed as soon as we got to the hotel and only got up again for a quick dinner. My family went sightseeing on Tuesday so I had the quiet hotel room to myself and slept a good portion of Tudsay and quietly read between naps - that felt wonderful to have such quiet!
Wednesday morning we had to be to Stanford by 8AM. Dr. Montoya didn't make it in to see us until about 9:30, but then he spent a full hour and a half with us! We were stunned that he took so much time. We really didn't learn anything new there, basically just confirmed that everything we had already been doing with Dr. Peterson was exactly what he also felt we should be doing. I guess our main "take away" from that appointment was Rick's better understanding of how stress negatively impacts my body and how basically anything and everything can cause some level of stress in either the emotional, mental or physical areas and that we need to limit as much of any type of these as we can. We came home and had to take a hard look at our lives and have cut out many commitments this year. As I posted in my Cutting Back thread, that includes my time spent on the internet.
I did better on the trip home, but have had a hard time getting out of bed each morning since the trip and my muscle twitching that had noticably diminished since starting the IVIG treatments has come back pretty significantly ever since the trip. That kind of travel is just SO hard on me. It's ironic that I'm told to "cut stress" but in order to get that advice my insurance sends me on a trip that is very stressful on my body!
I Hope You Dance fundraiser
Our highlight of last week was getting to attend the Whittemore Peterson Institue's I Hope You Dance fundraiser. Thank you, again, to all who enabled us to attend!!! I went in my wheelchair and did great for the first part of the program, but with so much stimulation (music, 500 people eating and talking, lights, sounds) I was pretty overwhelmed after about the first speaker. We did hear some very exciting things about upcoming announcements on Chronic Fatigue Syndrome research, so keep your ears open to the news in mid/late October when significant medical reasearch hits press release stage. I'm so hopeful about what's unfolding right here in Reno!
Homeschooling
We are still homeschooling this year. People ask me how we do it with my illness, and my answer remains that I simply cannot immagine trying to do a traditional school schedule with this illness! We have a flexable schedule, can start as late in the day as my health dictates, we can "bedschool" whenever we need to and I don't have to pack lunches or drive carpools. When you throw homework into the mix, I figure I would be putting just about as much effort into "schooling" my kids at the end of the day when everyone's already spent as I already do when I have the joy of working with them fresh in the day. So for me, homeschooling's really the only viable option I see right now, and I've very thankful for the opportunity to learn with my kids each day!
We are using My Father's World with Big J. in 5th grade, R in 1st. and Little J. still just coming along for the ride. :) The kids are also involved in Eagle Co-op and loving their classes there!
RV Trip
This week's going to be interesting. Rick's got a tummy bug, I'm trying to get back on my feet from yesterday's IV, then my next IV actually comes around on Friday morning. (I typically start feeling "better" from an IV about Thursday, so this week there won't be much room for rebound.) On Saturday we pick up our RV for our long-awaited family vacation. This has been in the planning for many months, since long before IVs or the Stanford trip or anything else and will be our first ever family vacation with all five of us and no one else. We are excited, but I must admit to feeling nervous too. This week Rick will do all the shopping while I work on packing. (Both my mom and a friend have offered to come help with the packing and I'm definately taking them up on their offer!)
I'm so praying this will be a time of wonderful family memories and that Rick and I will be able to be a true blessing to our kids next week without compromising my health farther. It's one of those decisions that we know comes with risk, and yet it's a choice we are making based on the needs of our whole family, for once not just making our family flex and stretch around my health limitations as they so regularly must do. We are going by RV so that I can rest in bed as much as I need to during the travel time and we are keeping our plans very simple, intentionally not trying to fit in visits with friends along the way or pushing through an activity-laden agenda. We'll be packing ready-to-eat foods and will do our best to simply "be" and focus on enjoying one another. Feel free to follow our adventures on our travel blog next week.
I'm praying my handcap license tag gets here this week. (I've had a plate for years, but as we won't be taking our van, I won't have handicap parking access if the window hanger tag doesn't come on time.) We realized on our trip to Stanford (Rick's parents drove us, so not our own vehicle) how important this tag would be for our trip, so my primary care doctor requested it for us the very next day. After her knee replacement surgery my mom had her tag within a week, so I'm hopeful it will come on time. Would you please join me in this specific prayer request?
Saturday, September 19, 2009
Hope in the Shadows
Have you ever heard someone describe a time of trial as, “living under the shadow of [xyz]”? My shadows have included infertility, grief, depression, chronic illness and more. I'm sure you can plug in your own "xyz"s; maybe cancer, abuse, loneliness…
Job and the Psalmist talk of “the valley of the shadow of death.” Shadows impress a dark picture of gloom and heaviness in my mind.
Hope demands I give shadows another look... [To read the remainder of this article, please visit (In)Courage where you can also enter to win a copy of my book, Hannah's Hope.]
Keep scrolling here for a great list of verses that reflect God's sheltering shadows in my life.
-----------------
One way God seems to work in my life is through “theme word seasons,” specific life lessons He wants to drive home with me and situations that bring those themes to light over and over until I finally begin to grasp a small portion of what He longs to teach me. Wait resounded in our hearts through the loss of our business and the struggle for my husband to find a new career that truly fit, all in the midst of infertility's endless cycles of hoping and hurting, wanting and worrying, coping and crying.
Waiting has given way to new horizons, a series of theme seasons too numerous to list here, but with one of the most recent being Hope. And then to Hope, God’s spent this year adding the active pursuit of Joy to my life as well. Here are some of my favorite resources from these three themes:
Wait:
- Hannah’s Prayer Ministries offers support through fertility challenges, including infertility or the death of a baby at any time from conception through early infancy.
- A Graceful Waiting by Jan Frank
- The Wait Poem by Russell Kelfer (Truly beautiful book, with a written message even more powerful than the photos! This poem was life-changing for me and has been impactful in many lives.)
Hope:
- Out of the Valley Ministries, Inc. Postpartum Depression Support
- Grieving the Child I Never Knew by Kathe Wunnenberg
- Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss by me, Jennifer Saake :)
Joy:
- Rest Ministries provides support in the face of chronic pain and illness, including National Invisible Chronic Illness Awareness Week each Sept.
- Rain on Me: Devotions of Hope and Encouragement for Difficult Times by Holley Gerth
- The book of Philippians, written by the apostle Paul.
-----------------------------
Verses that reflect God's sheltering shadows in my life:
“I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.” Isaiah 45:3. (NIV)
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light” Matthew 11:28-30 (NIV)
"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me" Micah 7:7. (NIV)
"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God..." Psalm 40:1-2, (NIV)
Job and the Psalmist talk of “the valley of the shadow of death.” Shadows impress a dark picture of gloom and heaviness in my mind.
Hope demands I give shadows another look... [To read the remainder of this article, please visit (In)Courage where you can also enter to win a copy of my book, Hannah's Hope.]
Keep scrolling here for a great list of verses that reflect God's sheltering shadows in my life.
-----------------
One way God seems to work in my life is through “theme word seasons,” specific life lessons He wants to drive home with me and situations that bring those themes to light over and over until I finally begin to grasp a small portion of what He longs to teach me. Wait resounded in our hearts through the loss of our business and the struggle for my husband to find a new career that truly fit, all in the midst of infertility's endless cycles of hoping and hurting, wanting and worrying, coping and crying.
Waiting has given way to new horizons, a series of theme seasons too numerous to list here, but with one of the most recent being Hope. And then to Hope, God’s spent this year adding the active pursuit of Joy to my life as well. Here are some of my favorite resources from these three themes:
Wait:
- Hannah’s Prayer Ministries offers support through fertility challenges, including infertility or the death of a baby at any time from conception through early infancy.
- A Graceful Waiting by Jan Frank
- The Wait Poem by Russell Kelfer (Truly beautiful book, with a written message even more powerful than the photos! This poem was life-changing for me and has been impactful in many lives.)
Hope:
- Out of the Valley Ministries, Inc. Postpartum Depression Support
- Grieving the Child I Never Knew by Kathe Wunnenberg
- Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss by me, Jennifer Saake :)
Joy:
- Rest Ministries provides support in the face of chronic pain and illness, including National Invisible Chronic Illness Awareness Week each Sept.
- Rain on Me: Devotions of Hope and Encouragement for Difficult Times by Holley Gerth
- The book of Philippians, written by the apostle Paul.
"Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies” Philippians 4:8-9. (MSG)
-----------------------------
Verses that reflect God's sheltering shadows in my life:
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows” James 1:17. (NIV)
“I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.” Isaiah 45:3. (NIV)
“The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned” Isaiah 9:2. (NIV)
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light” Matthew 11:28-30 (NIV)
"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31. (NIV)
"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me" Micah 7:7. (NIV)
"We wait in hope for the LORD; he is our help and our shield" Psalm 33:20. (NIV)
"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God..." Psalm 40:1-2, (NIV)
“I am the man who has seen affliction by the rod of his wrath.
He has driven me away and made me walk in darkness rather than light…
“He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead…
“Yet this I call to mind and therefore I have hope:
Because of the LORD’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness…
“For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love…
“You came near when I called you, and you said, ‘Do not fear.’
O Lord, you took up my case; you redeemed my life…”
- from Lamentations 3 (NIV)
Friday, September 18, 2009
Cutting Back
Here's the message I just posted to my Facebook account:
The bottom line is that I need to work on getting healthy. At my appointment with Dr. Montoya at Stanford, we spent a full 90 minutes talking with the doctor. One thing he emphasized was that stress, of any kind, can worsen my illness. He talked a lot about emotional and mental stress and we concluded that I spend way too much time on the computer. He challenged me to take a year and cut out absolutely everything I do not have to do, in hopes of gaining another 40 years of better health if I can help hault the progression of permanent cell damage in my brain and body now. (For sanity, I still "need" to write as it is one of my primary coping skills, so I don't consider blogging to be totally optional right now, but it needs to be a tool I can use when I need it and not something I have to do on anyone else's demands or timeline.)
Didn't want to "drop off the planet" without giving some explanation, but I will be in a lot less direct or personal connection with many friends for a season. I may or may not post frequently and when you do see a post it may be something I've prescheduled days or weeks in advance of when it actually posts here, so just because you see a post pop up on a blog doesn't even tell you that I was or was not online that day.
Due to health limitations, I will be dropping out of most things on facebook and other forums and social networking sites I have been part of. You may see me post an occassional update here, but I won't be reading much and may only very rarely reply.
My goal is to spend only about 10-15 minutes online each day, including emails, business. twitter, everything! Since I typically spend up to several hours per day online, this is a DRAMATIC change for me and will be hard to stick to, but for the sake of my family and trying to restore my health, it is something I need to commit to.
My main focus will be keeping up my 3 blogs:
http://www.HarvestingHope.blogspot.com - encouragement for life's trials
http://www.InnerBeautyGirlz.com - beauty tips and tricks, mineral makeup info, sales and discount codes
http://www.InfertiltiyMom.blogspot.com - my most personal blog with reflections on infertiltiy, loss, adoption, ongoing health updates related to Chronic Fatigue Syndrome ( CFS / CFIDS / ME/CFS ), motherhood, homeschooling and my life in a nutshell
Don't presume I know what's happening in your life just because you posted it to my facebook page. You can leave comments for me at any of those blogs and I should see them even if I am not able to reply. I do not want you to feel that I am abandoing my friendships, I'm simply trying to get healthy and this is part of what it's going to take. Thank you for your understanding.
The bottom line is that I need to work on getting healthy. At my appointment with Dr. Montoya at Stanford, we spent a full 90 minutes talking with the doctor. One thing he emphasized was that stress, of any kind, can worsen my illness. He talked a lot about emotional and mental stress and we concluded that I spend way too much time on the computer. He challenged me to take a year and cut out absolutely everything I do not have to do, in hopes of gaining another 40 years of better health if I can help hault the progression of permanent cell damage in my brain and body now. (For sanity, I still "need" to write as it is one of my primary coping skills, so I don't consider blogging to be totally optional right now, but it needs to be a tool I can use when I need it and not something I have to do on anyone else's demands or timeline.)
Didn't want to "drop off the planet" without giving some explanation, but I will be in a lot less direct or personal connection with many friends for a season. I may or may not post frequently and when you do see a post it may be something I've prescheduled days or weeks in advance of when it actually posts here, so just because you see a post pop up on a blog doesn't even tell you that I was or was not online that day.
Sunday, September 13, 2009
National Invisible Chronic Illness Awareness Week
I will be presenting at noon (Pacific) this Tuesday on the topic of Coping with Crisis on Top of Chronic. Follow link for archived version. :)
SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.
In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.
Well known Christian authors who will be presenting include:
• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009)
• Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008)
• Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009)
• Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008)
• Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005)
• Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005)
• Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004)
• Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)
Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”
Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”
Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”
Rest Ministries extends their outreach about invisible 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. 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, which they sponsor annually.”
One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.
See www.invisibleillness.com for more information or www.restministries.org for the sponsor of this event, Rest Ministries.
*Source: Chronic Care in America, U.S. Census Bureau
SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.
In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.
Well known Christian authors who will be presenting include:
• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009)
• Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008)
• Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009)
• Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008)
• Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005)
• Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005)
• Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004)
• Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)
Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”
Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”
Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”
Rest Ministries extends their outreach about invisible 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. 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, which they sponsor annually.”
One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.
See www.invisibleillness.com for more information or www.restministries.org for the sponsor of this event, Rest Ministries.
*Source: Chronic Care in America, U.S. Census Bureau
Friday, September 11, 2009
Hope You Dance donation Winners, Thank You!
My 5th IVIG went very well; much better than anything before! I'll post details later, but I'm exhausted right now as we headed out of town early Monday morning and got home late Wednesday night. I owe you a long, newsy post about that trip to see Dr. Montoya at Stanford, but it too will have to wait as I'm just so done in right now...
I do want to take a moment and thank everyone who contributed to "help me dance" and fight Chronic Fatigue Syndrome. We received about 95% of the $500 we had set out to raise for the Whittemore Peterson Institute and will be attending their I Hope You Dance event tomorrow night. I'll probably be in a wheelchair and may not be able to stay very late, but I'm so excited to have the chance to go at all! Thank you so much for not only making this personal dream of mine possible, but for helping further the research to find answers to this theiving illness!
The winner of the Gurrlie Girl jewelry set (and I threw in a bonus bracelet for the amazing generosity of your gift) is Virginia T. of California. Your package is on its way and should be there by the middle of next week.
Ruth L. of Nevada is the winner of the Affordable Mineral Makeup™. Ruth, please visit www.InnerBeautyGirls.com and email with your $30 selection. :)
Everyone else who contributed in any way should have received a thank you note from me (either via email or postal mail). If you haven't gotten yours by early next week, please let me know so I can be sure your donation was properly received and processed. Thank you all so much!
If you don't hear back from me again until sometime next week, I'll be able to update you on IVIG 6 and the fundraiser all at the same time too. :)
I do want to take a moment and thank everyone who contributed to "help me dance" and fight Chronic Fatigue Syndrome. We received about 95% of the $500 we had set out to raise for the Whittemore Peterson Institute and will be attending their I Hope You Dance event tomorrow night. I'll probably be in a wheelchair and may not be able to stay very late, but I'm so excited to have the chance to go at all! Thank you so much for not only making this personal dream of mine possible, but for helping further the research to find answers to this theiving illness!
The winner of the Gurrlie Girl jewelry set (and I threw in a bonus bracelet for the amazing generosity of your gift) is Virginia T. of California. Your package is on its way and should be there by the middle of next week.
Ruth L. of Nevada is the winner of the Affordable Mineral Makeup™. Ruth, please visit www.InnerBeautyGirls.com and email with your $30 selection. :)
Everyone else who contributed in any way should have received a thank you note from me (either via email or postal mail). If you haven't gotten yours by early next week, please let me know so I can be sure your donation was properly received and processed. Thank you all so much!
If you don't hear back from me again until sometime next week, I'll be able to update you on IVIG 6 and the fundraiser all at the same time too. :)
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