Posts
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.
Friday, September 25, 2009
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. :)
Saturday, September 5, 2009
Work At Home
| So You Want to Be a Work-at-Home Mom details all the basics of starting a business in a spiritual, motivational, and comprehensive manner. From deciding what type of business to start to keeping your family and faith first, this helpful tool details every aspect of establishing a business. With proven success tips utilized by the authors and others who own work-at-home businesses, this inspiration approach will provide you with the resources you need to start your own home-based business. So You Want to Be a Work-at-Home Mom includes: About the Authors
Below is an interview with the authors of So You Want To Be a Work-at-Home Mom – Jill & Diana.
How long have you been working at home? Jill Hart - I've been working at home since 2000. I had to go back to work full-time for a brief period in 2003 when my husband got out of the Air Force. At that point I got even more serious about making my business work and I've been home full-time since then. Diana Ennen – I’ve been working at home since 1985, when my son was born. He’s now graduated college and already working towards his own career. I absolutely love it. I can’t imagine doing anything else.
What types of businesses do you operate? Jill Hart – I run Christian Work at Home Moms, CWAHM.com, a website full of free resources, job listings and information about home businesses. I also write articles and books (yes, more books to come!) and am a blogger for sites like Time/Warner's Christian Momlogic.com and a member of the Guideposts blogger team Diana Ennen– I’m the President of Virtual Word Publishing. I’m a virtual assistant and specialize in marketing & publicity. I’ve also written numerous books on how to start a VA business and offer PR and VA Coaching.
Tell us about your book? How do you think it can benefit those who want to start a business? Jill Hart - The book has been such a "God thing." He orchestrated the entire sequence of events - from putting Diana and I together as co-authors to bringing us to the right publisher. The book is a hands-on practical guide for anyone who wants to build a business from home. We cover topics ranging from how to select the right type of business for you, to how to get started, to how to market and grow your business. Diana Ennen - I think one of the best features of our book is that it’s not only informative, but motivational as well. You’ll feel like friends are helping you on your journey to success. Also, we discuss numerous types of businesses to start and provide proven methods to achieve success. We also often hear how starting a business can be so overwhelming. That’s why we pay special attention to all the how tos. We feel very confident our book will help, not only those starting a business, but those already in business wanting to expand it.
What types of businesses are featured in your book? Jill Hart - We have such a great range of contributors - everything from direct sales companies like Southern Living at Home and Avon to unique product-driven businesses like BSM Media and GrillCharms. These woman are amazing and give readers a great insight into how they've grown their businesses in very different ways. Diana Ennen - We cover everything from direct sales companies to specialized areas such as medical transcription and virtual assisting. Also, Jill shares detailed information on starting a community based membership site. We think you’ll get a lot of helpful tips too from such work-at-home powerhouses as Maria Bailey and Lesley Spencer Pyle.
Do you have any tips for success for Christian entrepreneurs that you’d like to share? Jill Hart - I think my favorite tip - shared with me by one of our contributors, Tammy Degenhart, almost ten years ago is that working together benefits everyone. She told me, "Jill, what you give to others God brings back tenfold" and I've seen that hold true time and time again. It may not be in financial gains and it may not look like what we expected but God is so faithful in that when we work together there is no competition - it's a win-win situation. Diana Ennen - Do what you believe in and use your own skills and prior experience to find the business that’s just right for you. Research/Research/Research. The more you research, the better your business. Continue to market and be out there. So many once they find a few clients stop marketing. You need to get out there continually. You then become the go to person when someone needs services or products that you offer.
What are some of the challenges that you see with those starting or operating a business? Jill Hart – In my experience, I've talked with many women who get frustrated because success doesn't come easily or quickly. Working from home may sound easy, but in reality it can actually be just as hard as working outside the home. There are many unique challenges, especially when working at home while raising children. If women don't prepare themselves, they can become discouraged and disheartened. Diana Ennen– One of the major challenges I see is losing belief in yourself that you can do it. That’s why I think a faith-based book will be so beneficial. Even when times get tough, you can rely on your faith to forge ahead.
With the economy, do you believe it’s still a good time to start a business? Why? Jill Hart – I think it's a better time than ever. The internet is so much more widely used than it was even nine years ago when I began my website. If people do their research and find a company that fits them as well as their budget this can be a great time to break into the work-at-home field. Diana Ennen – Absolutely. In fact, I think there’s never been a better time. You might have to work a little harder, but it absolutely can be done. Plus, there are so many businesses who need us more than ever because of the economy. For example, with virtual assistants because businesses are downsizing they are seeking the help of a VA to help on an as needed basis.
Your book is written from a Christian perspective? Tell us a little about that and how you feel that makes it so unique? Jill Hart – My faith is central to who I am and therefore central to my business. I began Christian Work at Home Moms because I wanted women to have a safe place where they could discuss not only business things, but also talk about an area that doesn't get talked about a lot in business circles - how our faith affects our businesses. The book is written in a way that doesn't hit anyone over the head with our faith, but it's true to who we are and talks about things from the vantage point that we see life - through the lens of our faith. Diana Ennen – There are so many books out there today on starting a business. However, few have the Christian mom in mind. We provide a lot of scriptures and examples of how you can use your faith to help you. Our hope is that not only will your business thrive, but it might just give a little boost to your faith as well.
|
Wednesday, September 2, 2009
Such a Vivid Dream
I hadn't even been thinking of her much lately, certainly not focusing on dates. It snuck up on me quite by surprise this year, Noel's due date, Sept. 2. It was "Labor Day" that year that she was due, the day I was to have been "in labor". Since all my babies have come early, she probably whould have been an August baby instead...
I guess a mother's heart just can't forget, try as I might. For last night in my dreams I held a very vidid conversation with a friend all about Noel and how she was "about to turn 14". I didn't even realize until late in the day that TODAY was Sept. 2 nor connect that the dream was about this very date.
I know I'm rambling, but I can't go to sleep without at least saying, "Happy birthday, my sweet child. You were the first to touch my womb and Mommy will always hold a special place in my heart for you. I miss you even still and look forward to finally wrapping my arms around you and getting to know you some day in Heaven."
What would it be like to have a teenage daughter, a young woman on the verge of becoming an adult, in our home today? This wasn't God's perfect plan and I honestly can't imagine such a different reality than the one we live right now. But every now and then I can picture her and wonder about what could have been. Needing to focus once again on God's beautiful plan for our family just as He chose to build it rather than getting caught up in daydreams (or night dreams) about what can never be.
I guess a mother's heart just can't forget, try as I might. For last night in my dreams I held a very vidid conversation with a friend all about Noel and how she was "about to turn 14". I didn't even realize until late in the day that TODAY was Sept. 2 nor connect that the dream was about this very date.
I know I'm rambling, but I can't go to sleep without at least saying, "Happy birthday, my sweet child. You were the first to touch my womb and Mommy will always hold a special place in my heart for you. I miss you even still and look forward to finally wrapping my arms around you and getting to know you some day in Heaven."
What would it be like to have a teenage daughter, a young woman on the verge of becoming an adult, in our home today? This wasn't God's perfect plan and I honestly can't imagine such a different reality than the one we live right now. But every now and then I can picture her and wonder about what could have been. Needing to focus once again on God's beautiful plan for our family just as He chose to build it rather than getting caught up in daydreams (or night dreams) about what can never be.
Tuesday, September 1, 2009
IVIG 4, heading to Stanford, and a Busy September
While this will be a long post, it covers many things. It is not a reflection of my energy level, but rather a collection of things I've coppied/pasted here over the past several days, not having the energy to make a coherant post out of any of it until now. So thank you in advance for bearing with my bullet-point method today and I hope you find something of use or interest in my collection of "stuff".
- I'm so excited! My fundraiser for the Whittemore Peterson Institute benefit tickets is about 90% funded now. When I set up that link I really had no idea what to expect, but my friends have been so generous and I'm so thankful! Does anyone else want to "Help Me Dance" on Sept. 12?
My infusion Sunday was "exciting" and I'll share details in a moment. Here are Tweets I posted yesterday moring (12 hours post infusion) in 140 or less word chunks:
- Insomnia thanks to #migraine meds
- 4th IVIG included pounding chest & need for oxygen tank but benadryl kept throat from swelling. Hope it helps in the long run. #cfs #mecfs
- PICC line made yesterday so much better. No 1/2 hour digging for IV veins! #mecfs #cfids #cfs #chronic #illness #infusion IVIG
- I've been awake since 2AM. If I try to go back to bed at 5 will I just make myself too groggy to function by 7 or help later???
- Decided 2 take a shower rather than get groggy going back 2 bed. Was pretty funny plastic wrapping my PICC arm! #mecfs #insomnia #infusion
------------------------
So yes, I had my PICC installed on Friday. The process of getting to the hospital, registering, getting set up in a sterile room, double checking everything for latex-free, and getting my arm ready for the doctor was all rather lengthy, but the instalation itself was over in about 5 minutes. I had a little vertigo entering the room and was quite dizzy sitting back up after the procedure (reminded me of the Tilt Table test when they uprighted me afterwards), but overall it was pretty easy. My body didn't like the stress of having a tube inserted from my arm to my heart, or maybe it reacted to the mild anesthesia (?) but I ran about 102 temp most of Friday afternoon.
A sweet friend watched all three kids from 7AM to nearly noon while I got the PICC, went up to infusion for training on homecare and jumped through the hoops of trying to get homecare supplies. Sarah even fed me lunch when I got back to her house to pick up the kids! When my homecare supplies and insurance process were finally ready about 4, my mom (just 10 days out from her knee replacement surgery) drove me to my appointment to pick up supplies and we spent another 90 minutes their receiving their training along with a "sale's pitch" of why we should be doing infusions through their center rather than at the hospital that our insurance approved. (Um, yeah, I'm just happy to have insurance approval on this. I am NOT rocking the boat by telling my insurance that I want to change anything! And as long as I'm as reactive as I am, I really feel safer having my infusions in a hospital setting in case something goes really wrong.)
Amazingly, and all I can think is that this is testament that the IVIG is doing SOMETHING positive for my body already, by the time I got home from the supply clinic and normally would have fallen flat on my face, my fever had broken and I felt good enough to join my family for a couple of hours at the state fair! This is so far removed from anything in my normal reality that I can't even put it into words. Friends, I didn't even use a wheelchair!!!!!
At the infusion on Sunday we started off with benadryl in hopes of offsetting the tight chest and burning/swollen throat and tongue I had experienced the previous week. It was so nice to walk in, hook up my PICC and not have any pokes! I did OK for the first while of the IV, then started getting a tight chest again and broke out the inhailer. That helped, but only for half an hour or so. I got a sore throat again, but not nearly as bad as the previous week and it did not progress to feeling swollen or involving my tongue. Then my chest started getting tighter and tighter and hurting more and more, with aching down my left arm as well. (That was also the arm with the fresh PICC and big bruise, so hard to say exactly what pain was coming from what.)
My nurse was working with chemo for another patient, so I couldn't immediately get her attention when I started having trouble breathing, but the moment she noticed my distress she ran over to flip off my IV and stuck oxygen in my nose. I don't have a very clear memory of nearly half an hour there (I know the timeline only because a show was just starting on Food Network when I started feeling like I was in real trouble and it was ending when I became more "aware" and stabalized again). At some point she was able to finish the chemo start and get back over to me to monitor my vitals and she said my heart was racing pretty hard. It's a scary process, but we are hopeful and prayerful that in the end it will prove worthwhile.
I think one of the hardest parts of the day was having my husband and kids get there to pick me up at the end and seeing them trying to process walking in on a very sick looking Mommy still hooked up to the last few minutes of my IV drip, the blood pressure, the pulse/02 monitor, and oxygen still in my nose. I am always sick, but I don't "look sick" most of the time, so this was something new for all of us to process.
A migraine hit at bedtime that night but we got on top of it right away, including meds and sleeping on an ice pack and when I woke up at 2AM I felt much better (but then could never get back to sleep). I ended up going into my sons' room about 10:30 yesterday morning to help our little one put away his stuffed animals and closed my eyes "just for a minute" and woke up about 1PM to a ringing phone! The kids had been good as gold, with the little guy curled up asleep with me and the older two quietly entertaining themselves and not even making any messes. I had no idea I had konked out like that!!!
For the next several hours I felt just a touch dizzy and a bit narcoleptic (every time I sat down or tried to read anything I either couldn't keep my eyes open to focus or actually did fall asleep again) and my throat was sore and raspy. There is absolutely no way I would have even thought of attempting to drive under those conditions as I could have easily fallen asleep behind the wheel before even getting to the end of my own street. My husband talked to me over the phone about 1:30 and said I "sounded drugged" but I really felt pretty good other than the sleepiness. I do know I have some cognative stuff going on as I'm having problems getting out words at times or typing the right words (this post has been edited and re-edited more times than I can count, just to be readable), but I felt some of the sweetest more "rested" feeling I have felt in a long time yesterday afternoon. I can't remember the last time I just felt "sleepy" - that warm cozy, "I want to curl up like a cat and take a lazy nap" feeling - rather than truly "exhausted" - that kind of pain and fatigue and extreem tiredness that can't be slept away and doesn't feel the least bit cozy. Yesterday I actually felt "sleepy" for the first time I can remember in litterally YEARS!!!!
I did have a bit of trouble getting back to sleep last night (finally crashed about 11) but once I got to sleep I slept soundly. This morning I gladly could have kept sleeping probably for several more hours, but our 3-year-old had other ideas and I've been up since about 7. I'm feeling more on the tired end of the spectrum again this morning rather than just sleepy, but still feeling better than many days. I am pretty sore today, all over, but again, certainly not my worst day. It's only 9AM, so it's hard to say how the day will unfold, but I'm hopeful that we will get back on track with school today since yesterday I couldn't focus to read.
- For all our family is enduring, I am continually reminded of just how easy we have it, how blessed we are. My heart is heavy for many, but if I could especially ask your prayers for two families, I would greatly appreciate having you join me before the Throne of grace on behalf of the Evans and the Schneiders.
Dan and Barb Evans are missionaries with Cadence International (the orgization my parents have ministerd with for 37 years) and Barb has just had surgery for a brain tumor that they are now saying will take her life within about 4 months. She has two adopted miracle children, I believe about ages 5 and 10 with the older one having some developmental delays of his own. I'm following Dan's updates on Twitter.
The Schneiders are a family from our homeschool co-op. Their older daughter was in a class with our older son about a year ago and their daughter, Erica, was in a class with our daughter when they were both 5. Erica has been undergoing treatment for Lukemia ever since. It has been a brutal year for this family. Erica is about to enter the most harsh stage of her treatment and will have a double course (typically only given once) but if this does not completely wipe out the cancer with the double course, there will be no more options and she will have less than 5 more years to live. I watch the cancer patients come in and out of the infusion center each week and know a bit of what they go through - I simply cannot imagine the pain and fear any child must process to endure all that or what it would be like to be a parent helpless to stop the horror for your baby.
- This Friday is my final appointment in follow up for the foot I broke last May. I'm doing well enough that I think I will just cancel the appointment. It's so nice to have something actually healing well! :)
- I'll have my 5th IVIG infusion on Sunday the 6th, then we leave the next day for the tedious drive to Stanford to meet with another specalist there on the 9th. If I'm at all able to still function by then, we will be back in Reno for the I Hope You Dance institute dinner on the 12th, though I will be thankful even to be functional enough to attend in a wheelchair after the trip to the Bay and back!
- We are still looking forward to our RV trip (the free rental I won by blogging) the end of the month and hope that works well as I can lay in bed as much as I need to while we travel. I have three articles I'm needing to write for September deadlines, two as a Natural Beauty Expert for Dr. Mommy and one I'm really excited about for (In)Courage on the topic of hope, and a radio interview for Rest Ministries National Invisible Chronic Illness Awareness Week (NICIAW) at noon on the 15th. It's a big month and I appreciate your prayers for wisdom in knowing my priorities and strength for each step God calls me to take.
- I'm so excited! My fundraiser for the Whittemore Peterson Institute benefit tickets is about 90% funded now. When I set up that link I really had no idea what to expect, but my friends have been so generous and I'm so thankful! Does anyone else want to "Help Me Dance" on Sept. 12?
My infusion Sunday was "exciting" and I'll share details in a moment. Here are Tweets I posted yesterday moring (12 hours post infusion) in 140 or less word chunks:
- Insomnia thanks to #migraine meds
- 4th IVIG included pounding chest & need for oxygen tank but benadryl kept throat from swelling. Hope it helps in the long run. #cfs #mecfs
- PICC line made yesterday so much better. No 1/2 hour digging for IV veins! #mecfs #cfids #cfs #chronic #illness #infusion IVIG
- I've been awake since 2AM. If I try to go back to bed at 5 will I just make myself too groggy to function by 7 or help later???
- Decided 2 take a shower rather than get groggy going back 2 bed. Was pretty funny plastic wrapping my PICC arm! #mecfs #insomnia #infusion
------------------------
So yes, I had my PICC installed on Friday. The process of getting to the hospital, registering, getting set up in a sterile room, double checking everything for latex-free, and getting my arm ready for the doctor was all rather lengthy, but the instalation itself was over in about 5 minutes. I had a little vertigo entering the room and was quite dizzy sitting back up after the procedure (reminded me of the Tilt Table test when they uprighted me afterwards), but overall it was pretty easy. My body didn't like the stress of having a tube inserted from my arm to my heart, or maybe it reacted to the mild anesthesia (?) but I ran about 102 temp most of Friday afternoon.
A sweet friend watched all three kids from 7AM to nearly noon while I got the PICC, went up to infusion for training on homecare and jumped through the hoops of trying to get homecare supplies. Sarah even fed me lunch when I got back to her house to pick up the kids! When my homecare supplies and insurance process were finally ready about 4, my mom (just 10 days out from her knee replacement surgery) drove me to my appointment to pick up supplies and we spent another 90 minutes their receiving their training along with a "sale's pitch" of why we should be doing infusions through their center rather than at the hospital that our insurance approved. (Um, yeah, I'm just happy to have insurance approval on this. I am NOT rocking the boat by telling my insurance that I want to change anything! And as long as I'm as reactive as I am, I really feel safer having my infusions in a hospital setting in case something goes really wrong.)
Amazingly, and all I can think is that this is testament that the IVIG is doing SOMETHING positive for my body already, by the time I got home from the supply clinic and normally would have fallen flat on my face, my fever had broken and I felt good enough to join my family for a couple of hours at the state fair! This is so far removed from anything in my normal reality that I can't even put it into words. Friends, I didn't even use a wheelchair!!!!!
At the infusion on Sunday we started off with benadryl in hopes of offsetting the tight chest and burning/swollen throat and tongue I had experienced the previous week. It was so nice to walk in, hook up my PICC and not have any pokes! I did OK for the first while of the IV, then started getting a tight chest again and broke out the inhailer. That helped, but only for half an hour or so. I got a sore throat again, but not nearly as bad as the previous week and it did not progress to feeling swollen or involving my tongue. Then my chest started getting tighter and tighter and hurting more and more, with aching down my left arm as well. (That was also the arm with the fresh PICC and big bruise, so hard to say exactly what pain was coming from what.)
My nurse was working with chemo for another patient, so I couldn't immediately get her attention when I started having trouble breathing, but the moment she noticed my distress she ran over to flip off my IV and stuck oxygen in my nose. I don't have a very clear memory of nearly half an hour there (I know the timeline only because a show was just starting on Food Network when I started feeling like I was in real trouble and it was ending when I became more "aware" and stabalized again). At some point she was able to finish the chemo start and get back over to me to monitor my vitals and she said my heart was racing pretty hard. It's a scary process, but we are hopeful and prayerful that in the end it will prove worthwhile.
I think one of the hardest parts of the day was having my husband and kids get there to pick me up at the end and seeing them trying to process walking in on a very sick looking Mommy still hooked up to the last few minutes of my IV drip, the blood pressure, the pulse/02 monitor, and oxygen still in my nose. I am always sick, but I don't "look sick" most of the time, so this was something new for all of us to process.
A migraine hit at bedtime that night but we got on top of it right away, including meds and sleeping on an ice pack and when I woke up at 2AM I felt much better (but then could never get back to sleep). I ended up going into my sons' room about 10:30 yesterday morning to help our little one put away his stuffed animals and closed my eyes "just for a minute" and woke up about 1PM to a ringing phone! The kids had been good as gold, with the little guy curled up asleep with me and the older two quietly entertaining themselves and not even making any messes. I had no idea I had konked out like that!!!
For the next several hours I felt just a touch dizzy and a bit narcoleptic (every time I sat down or tried to read anything I either couldn't keep my eyes open to focus or actually did fall asleep again) and my throat was sore and raspy. There is absolutely no way I would have even thought of attempting to drive under those conditions as I could have easily fallen asleep behind the wheel before even getting to the end of my own street. My husband talked to me over the phone about 1:30 and said I "sounded drugged" but I really felt pretty good other than the sleepiness. I do know I have some cognative stuff going on as I'm having problems getting out words at times or typing the right words (this post has been edited and re-edited more times than I can count, just to be readable), but I felt some of the sweetest more "rested" feeling I have felt in a long time yesterday afternoon. I can't remember the last time I just felt "sleepy" - that warm cozy, "I want to curl up like a cat and take a lazy nap" feeling - rather than truly "exhausted" - that kind of pain and fatigue and extreem tiredness that can't be slept away and doesn't feel the least bit cozy. Yesterday I actually felt "sleepy" for the first time I can remember in litterally YEARS!!!!
I did have a bit of trouble getting back to sleep last night (finally crashed about 11) but once I got to sleep I slept soundly. This morning I gladly could have kept sleeping probably for several more hours, but our 3-year-old had other ideas and I've been up since about 7. I'm feeling more on the tired end of the spectrum again this morning rather than just sleepy, but still feeling better than many days. I am pretty sore today, all over, but again, certainly not my worst day. It's only 9AM, so it's hard to say how the day will unfold, but I'm hopeful that we will get back on track with school today since yesterday I couldn't focus to read.
- For all our family is enduring, I am continually reminded of just how easy we have it, how blessed we are. My heart is heavy for many, but if I could especially ask your prayers for two families, I would greatly appreciate having you join me before the Throne of grace on behalf of the Evans and the Schneiders.
Dan and Barb Evans are missionaries with Cadence International (the orgization my parents have ministerd with for 37 years) and Barb has just had surgery for a brain tumor that they are now saying will take her life within about 4 months. She has two adopted miracle children, I believe about ages 5 and 10 with the older one having some developmental delays of his own. I'm following Dan's updates on Twitter.
The Schneiders are a family from our homeschool co-op. Their older daughter was in a class with our older son about a year ago and their daughter, Erica, was in a class with our daughter when they were both 5. Erica has been undergoing treatment for Lukemia ever since. It has been a brutal year for this family. Erica is about to enter the most harsh stage of her treatment and will have a double course (typically only given once) but if this does not completely wipe out the cancer with the double course, there will be no more options and she will have less than 5 more years to live. I watch the cancer patients come in and out of the infusion center each week and know a bit of what they go through - I simply cannot imagine the pain and fear any child must process to endure all that or what it would be like to be a parent helpless to stop the horror for your baby.
- This Friday is my final appointment in follow up for the foot I broke last May. I'm doing well enough that I think I will just cancel the appointment. It's so nice to have something actually healing well! :)
- I'll have my 5th IVIG infusion on Sunday the 6th, then we leave the next day for the tedious drive to Stanford to meet with another specalist there on the 9th. If I'm at all able to still function by then, we will be back in Reno for the I Hope You Dance institute dinner on the 12th, though I will be thankful even to be functional enough to attend in a wheelchair after the trip to the Bay and back!
- We are still looking forward to our RV trip (the free rental I won by blogging) the end of the month and hope that works well as I can lay in bed as much as I need to while we travel. I have three articles I'm needing to write for September deadlines, two as a Natural Beauty Expert for Dr. Mommy and one I'm really excited about for (In)Courage on the topic of hope, and a radio interview for Rest Ministries National Invisible Chronic Illness Awareness Week (NICIAW) at noon on the 15th. It's a big month and I appreciate your prayers for wisdom in knowing my priorities and strength for each step God calls me to take.
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