Today I scheduled my next IVIG. Snaps for me! I didn't wait until the last minute this month. I took the hint when both the pharmacy and my home health nurse called and left me a reminder. Hmm...Ya think they know me pretty well? Anyway, my shipment should arrive on Friday and I'll have the infusion later next week. Hopefully the treatment will lessen my nerve and joint pain.
Today I felt a ridiculous amount of joint pain, especially in my wrists and ankles. I guess wearing heels is out of the question for a few days. Oh well, I guess it's flip flops for me!
I found out today I will be able to attend the GBS-CIDP Foundation International Symposium in November and I can't wait. I've never been to one of these before and I've heard they're very informative and encouraging. I can't wait to meet people I've come to know online. If you're planning to attend, would you email me at let me know you're going? I'd love to see you there.
Tonight I'm filled with refreshing hope,
Kristen
Wednesday, August 13, 2008
Tuesday, August 12, 2008
Fat Lip
I'm desperately trying to get caught up on some writing while my younger two are getting louder and louder playing next to me. They're not doing anything wrong...it's me...trying to accomplish something when I should just be enjoying my kids.
Ten minutes later...
Funny I would post the above because right in the middle of my thought process on what to write, my youngest starts screaming and I turned around to see her mouth covered in blood. It seems she wanted what my son had and just thought she would TAKE it. She found out the hard way that doesn't work out too well. The toy slipped right out of my son's hands and hit her smack in the mouth, splitting her top lip.
So now she's on the couch with a wet rag on her already fat lip and my son is dancing in front of her trying to get her to laugh and forget about the pain. Time to go be a mommy...I wouldn't trade these days for anything!
What's going on around your home today? Fat lip anyone?
With HOPE,
Kristen
Ten minutes later...
Funny I would post the above because right in the middle of my thought process on what to write, my youngest starts screaming and I turned around to see her mouth covered in blood. It seems she wanted what my son had and just thought she would TAKE it. She found out the hard way that doesn't work out too well. The toy slipped right out of my son's hands and hit her smack in the mouth, splitting her top lip.
So now she's on the couch with a wet rag on her already fat lip and my son is dancing in front of her trying to get her to laugh and forget about the pain. Time to go be a mommy...I wouldn't trade these days for anything!
What's going on around your home today? Fat lip anyone?
With HOPE,
Kristen
Tuesday, August 5, 2008
It's Been A While
It's been awhile since I last posted...not sure why. Busy working on a couple of projects for one thing, but also I think I'm in that familiar "funk" of just getting by. I'm definitely not depressed or anything, just frustrated with CIDP. I'm sure you've been there. I'm sure we've all been in that place where we have to just put one foot in front of the other, not showing any emotion or the flood gates will open. Been there? Welcome to chronic illness! **smile**
Even in the "funk", I have HOPE. Tremendous HOPE! I'm sure this will pass and I'll be dealing with my body better in a few days. Like everyone else, I just get frustrated at not being able to do what I want my body to do. Grrr! Don't know what works for you, but what works for me is spending some alone time with God. I have some work to do this morning, but my afternoon belongs to Him!
Hope you have a great day filled with refreshing hope!
Kristen
Even in the "funk", I have HOPE. Tremendous HOPE! I'm sure this will pass and I'll be dealing with my body better in a few days. Like everyone else, I just get frustrated at not being able to do what I want my body to do. Grrr! Don't know what works for you, but what works for me is spending some alone time with God. I have some work to do this morning, but my afternoon belongs to Him!
Hope you have a great day filled with refreshing hope!
Kristen
Wednesday, July 23, 2008
Hurricane Dolly
It seems we've dodged the bullet (Dolly) and are only getting a large amount of rain and high winds. Thankfully, we're all safe and sound.
It's an adventure living in this area of the country especially with CIDP. With any chronic illness, if you take medications, you have to make sure you have plenty of each prescription in case we have to evacuate. Luckily, I don't take meds, so I don't have to worry about this one. My mom does, though and we all know how picky insurance companies can be about the refill time. This can get expensive when planning to leave town in a hurry.
For those who are incapable of evacuating, they are encouraged to call 211 and register. Not sure if this is a state or federal registry, but I think it's great for people who can't manage on their own or who don't have family to care for them in an evacuation.
As for me, thankfully I had already received my shipment of Gamunex and was waiting to schedule my next infusion when news came about the hurricane. My nurse was able to squeeze in a treatment for me in the wee hours of the morning and I can't tell you how glad I am to have my infusion over with. I certainly wouldn't have wanted to travel with the side effects of IVIG, but I wouldn't have been able to wait any longer. I was so glad we could fit it in and I gathered my hurricane supplies for my family the day prior to my treatment. For those who don't live on the coast, we need things like flashlights, batteries, nonperishable food, water, first aid kit, etc. It's really not that bad, but planning for a family of five can get expensive. The kids think it's great because our pantry is stocked with snacks and we get to watch tv (weather) all day! My family is intrigued by storms, so this is exciting for my kids.
Anyway, the brunt of the storm went way south and tonight the kids got to play outside for about an hour. I'm not sure who was more excited about them playing outside, the kids or Mom? We're still expecting more rain and high winds, but tonight there was a lull in the outer rain bands of the storm so my kids were enjoying it. Hopefully we won't have any tornadoes and this will be over with soon. I think we're gotten past the worst of what we're going to get. It's a different story farther south.
Keep those in Port Isabel and the Brownsville area in your prayers.
Blessings,
Kristen
It's an adventure living in this area of the country especially with CIDP. With any chronic illness, if you take medications, you have to make sure you have plenty of each prescription in case we have to evacuate. Luckily, I don't take meds, so I don't have to worry about this one. My mom does, though and we all know how picky insurance companies can be about the refill time. This can get expensive when planning to leave town in a hurry.
For those who are incapable of evacuating, they are encouraged to call 211 and register. Not sure if this is a state or federal registry, but I think it's great for people who can't manage on their own or who don't have family to care for them in an evacuation.
As for me, thankfully I had already received my shipment of Gamunex and was waiting to schedule my next infusion when news came about the hurricane. My nurse was able to squeeze in a treatment for me in the wee hours of the morning and I can't tell you how glad I am to have my infusion over with. I certainly wouldn't have wanted to travel with the side effects of IVIG, but I wouldn't have been able to wait any longer. I was so glad we could fit it in and I gathered my hurricane supplies for my family the day prior to my treatment. For those who don't live on the coast, we need things like flashlights, batteries, nonperishable food, water, first aid kit, etc. It's really not that bad, but planning for a family of five can get expensive. The kids think it's great because our pantry is stocked with snacks and we get to watch tv (weather) all day! My family is intrigued by storms, so this is exciting for my kids.
Anyway, the brunt of the storm went way south and tonight the kids got to play outside for about an hour. I'm not sure who was more excited about them playing outside, the kids or Mom? We're still expecting more rain and high winds, but tonight there was a lull in the outer rain bands of the storm so my kids were enjoying it. Hopefully we won't have any tornadoes and this will be over with soon. I think we're gotten past the worst of what we're going to get. It's a different story farther south.
Keep those in Port Isabel and the Brownsville area in your prayers.
Blessings,
Kristen
Wednesday, July 16, 2008
Changing Symptoms
As I drove home from back to school shopping for my oldest, I tried to figure out why I was such a grump. I was tired and cranky, but more than that, I was worried and frustrated.
You see I've been making great effort to stay indoors in the middle of the day to avoid the South Texas heat. Today I was in such a hurry to get things done, I never gave it a second thought. That is, until my left hand and left leg were completely numb. Then I realized what I had done. I was driving around and walking in the scorching heat, knowing full well how it affects me.
Before I knew it, worry and frustration had taken over. How will this progress? What will happen next? Will this last long? How many days until my next treatment? Will I have the strength to get from the truck to the house? Will I be able to cook supper for my family? UGH!
Yes, I made it from the truck to the house. I grabbed a bottle of water and relaxed on the couch. Yes, I was able to make supper. Not an elaborate one, but it fed my family just the same. After a relaxing evening I was even able to take a walk to the end of the block and meet a new neighbor.
I wish I could say I was strong and confident when my symptoms progress, but I'm not. I worry and get frustrated with my body's inability to perform. Some of the feeling came back in my leg tonight, but not in my hand. (Not unusual for my left hand)
Tonight I'm resting in the certainty I have found in God. Nothing else in my life is certain. My body changes, life constantly changes, but God remains the same. My worry and frustration are futile. Thank you, Lord. Tonight I'm resting in your certainty, your faithfulness.
"I the Lord do not change..." Malachi 3:6
You see I've been making great effort to stay indoors in the middle of the day to avoid the South Texas heat. Today I was in such a hurry to get things done, I never gave it a second thought. That is, until my left hand and left leg were completely numb. Then I realized what I had done. I was driving around and walking in the scorching heat, knowing full well how it affects me.
Before I knew it, worry and frustration had taken over. How will this progress? What will happen next? Will this last long? How many days until my next treatment? Will I have the strength to get from the truck to the house? Will I be able to cook supper for my family? UGH!
Yes, I made it from the truck to the house. I grabbed a bottle of water and relaxed on the couch. Yes, I was able to make supper. Not an elaborate one, but it fed my family just the same. After a relaxing evening I was even able to take a walk to the end of the block and meet a new neighbor.
I wish I could say I was strong and confident when my symptoms progress, but I'm not. I worry and get frustrated with my body's inability to perform. Some of the feeling came back in my leg tonight, but not in my hand. (Not unusual for my left hand)
Tonight I'm resting in the certainty I have found in God. Nothing else in my life is certain. My body changes, life constantly changes, but God remains the same. My worry and frustration are futile. Thank you, Lord. Tonight I'm resting in your certainty, your faithfulness.
"I the Lord do not change..." Malachi 3:6
Sunday, July 13, 2008
We're Home!
We're home from vacation and now I need a vacation! We had a wonderful time together and created lifetime memories with our kids. It was just fabulous. It was also exhausting! I need about two days of solid sleep to recover, but that's never going to happen. So, we're back to life as usual.
Just before I left town, I received news that I will be a weekly devotional writer for Rest Ministries! I'm honored to write to encourage those with chronic illness and I'm thrilled with this opportunity. I would really appreciate your prayers about this great news.
For those of you who've emailed me, I'm working hard to answer everyone by Monday night. I'm overwhelmed by your questions, comments, and feedback. Thank you so much.
Many blessings,
Kristen
Just before I left town, I received news that I will be a weekly devotional writer for Rest Ministries! I'm honored to write to encourage those with chronic illness and I'm thrilled with this opportunity. I would really appreciate your prayers about this great news.
For those of you who've emailed me, I'm working hard to answer everyone by Monday night. I'm overwhelmed by your questions, comments, and feedback. Thank you so much.
Many blessings,
Kristen
Sunday, July 6, 2008
Vacation
Hi Everyone!
I'm currently enjoying a much needed vacation with my husband and kids. Just wanted you to know I'll be back in just a few short days with some really exciting news! Talk to you in a few days. Until then...grab a chair and a cup of coffee and check out these fantastic blogs.
Many blessings,
Kristen
www.positivelyalene.blogspot.com
www.encouragementfrommyheart.blogspot.com
I'm currently enjoying a much needed vacation with my husband and kids. Just wanted you to know I'll be back in just a few short days with some really exciting news! Talk to you in a few days. Until then...grab a chair and a cup of coffee and check out these fantastic blogs.
Many blessings,
Kristen
www.positivelyalene.blogspot.com
www.encouragementfrommyheart.blogspot.com
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