Today is a great day to celebrate God's faithfulness. My brother is graduating today from Penn State with his doctorate and I can't begin to tell how thankful and greatful to God for answering our prayers. After a very difficult journey he did it. What an amazing accomplishment for someone who has suffered so much. Oh, I wish I could be there to celebrate with them. However, it is probably a good thing because I would be a mess. Is is okay to carry a box of Kleenex with you?
For those of you who have prayed for him over the years thank you. Does God still do the impossible? Yes!!! I have seen it with my own eyes. Yes, he has improved, however he still has tremendous pain that I can't even begin to describe to you. With God's help and his medicine he is more functional and I am amazed at what he can do.
He really is my hero. Even before I got Guillian Barre he taught me a lot about suffering and now through my experience I totally get what he was trying to tell me. He continues to model faithfulness in the midst of a really hard experience. I will never forget the picture he gave me of God weeping with us during our pain. I have often thought of that and God's presence and compassion has certainly got me through the hard days.
So, I celebrate today with my brother and I give all praise and thanksgiving to God for hearing our prayers and allowing him to have this moment.
Saturday, December 20, 2008
Monday, December 1, 2008
Very thankful!!
Thanksgiving was very meaningful for me this year and I have to admit that I often found myself teary. Here are a couple of the highlights of the last few weeks.
First, two weeks ago I was able to go to an evening mission meeting. This was a big deal for me. I felt really emotional that night because for one evening I forgot about my illness and remembered my love for missions. It was such a treat. Because my in laws were here to chauffeur, do laundry and make supper I was able to rest during the day and then I was able to go in the evening. Thank you Joe and Cynthia! Did I tell you that I even got to go out for supper with my husband. Yeh!
Second, I also got to go to our church Thanksgiving supper. It has been long time since I went to church in the evening. I realized how thankful I was for the ability to go to church. I was so thankful for my church family who has helped us so much during the last 16 months.
Thirdly, with my mother in laws help we were able to cook a Thanksgiving dinner and have a few of our Russian friends over. What a blessing! It has been awhile since we have been able to entertain. It was very special.
Traditionally every year the boys go out and get a branch and we put it in a vase. We write things we are thankful for on paper leaves and hang it on our tree. Our tree was full and it was a great reminder of how blessed we are.
1Thessalonians 5:22
Be joyful always, pray continually; give thanks in all circumstances for this is God's will for you in Christ Jesus.
First, two weeks ago I was able to go to an evening mission meeting. This was a big deal for me. I felt really emotional that night because for one evening I forgot about my illness and remembered my love for missions. It was such a treat. Because my in laws were here to chauffeur, do laundry and make supper I was able to rest during the day and then I was able to go in the evening. Thank you Joe and Cynthia! Did I tell you that I even got to go out for supper with my husband. Yeh!
Second, I also got to go to our church Thanksgiving supper. It has been long time since I went to church in the evening. I realized how thankful I was for the ability to go to church. I was so thankful for my church family who has helped us so much during the last 16 months.
Thirdly, with my mother in laws help we were able to cook a Thanksgiving dinner and have a few of our Russian friends over. What a blessing! It has been awhile since we have been able to entertain. It was very special.
Traditionally every year the boys go out and get a branch and we put it in a vase. We write things we are thankful for on paper leaves and hang it on our tree. Our tree was full and it was a great reminder of how blessed we are.
1Thessalonians 5:22
Be joyful always, pray continually; give thanks in all circumstances for this is God's will for you in Christ Jesus.
My sweet boys!
Here they are and so cute. They sure make me smile and definitely make me laugh. We recently started a new tradition at our house. Every dinner time is question time. Each person gets to ask a question and the rest of us have to answer it. We have learned a lot about each other and I think that the boys have had an easier time answering the questions than I have. ie. What is your favorite, favorite place to eat? What do you think heaven will be like? What is your favorite animal? and What was your favorite thing to do this week?
Bennett is our project man. He loves to be creative. Give him an idea or plan some kind of craft or project and he can hardly contain his excitement. Don't mention the project ahead of time or you may have to do it at 7am. He loves Legos and building things. He has reputation for taking random things and creating things with it. He also has a great imagination and goes on many adventures to get the bad guys of course. He loves Star Wars and I am convinced would love to be the next Jedi Knight. He is our morning guy and has an amazingly happy disposition. He is very affectionate and frequently stops playing to give his mommy a quick hug.
Cody is our compassionate and senstive one. He has frequently told me that when he grows up he wants to be a doctor and a cooker so he can take care of Mommy and Daddy. I would not be surprised if he did. He constantly surprises us with his profound thoughts. ie. Why did God make mean dinosaurs? Did you know that God still loves us even when we make mistakes? I am glad that there won't be any wasps in heaven! He loves a wide variety of things but his favorites are Star Wars, legos, and playmobil. Sound familiar? He loves his brother and often says "You are the best big brother ever!" He is a great playmate for Bennett and that has been a great blessing for me especially during this time.
So if you come to visit don't forget to bring your lightsaber, scissors, glue stick or in Cody's case you might even want to bring your sword because you may have to pretend that you are Goliath. You never know what kind of adventure you will go on at our house.
Wednesday, November 12, 2008
A good reminder
Every so often I get out my Guillian Barre book and I probably should more often because it helps me understand my pain. Perhaps it will help you too.
"Pain is an underappreciated symptom that may persist for many years after GBS. It may be neuropathic pain or the pain that results from oversuse of incompletely recovered muscles....Many patients complain of persistent discomfort in their feet. This discomfort may take the form of tingling, an illusion of swelling or tightness or aching pain. The symptoms tend to be worse in the evening or at night...Neuropathic pain is particularly annoying during the nights that follow days during which the patients have been on their feet. Pain improves with time in some patients, but others are left with annoying or disabling pain that persists for years. Even though most patients recover their strength following GBS, some are left with persistent pain. Treatment for neuropathic pain is a challenge. Complete relief is difficult to relieve. "
I have to admit that sometimes it is a struggle because yes I look normal and yes I am functioning, but I am sure uncomfortable. The crazy thing is that from day to day it varies greatly. Yes, I have realized just how much my medicine is helping, but I sure realize how much more I need. I am so thankful that we found something that works, and I am in the process of trying to increase it to a level in which the side effects are not disabling.
Thank you! Thank you! to those that continue to surprise us with meals or help. God is so good to us!! Honestly, there are times in the midst of my pain when it seems exhausting to have to think or call someone for help. We so appreciate your prayers!!
My goal for the next blog------ My boys. Some have asked for a recent picture, and so I hope to show you my sweet boys. They are so funny and full of life.
"Pain is an underappreciated symptom that may persist for many years after GBS. It may be neuropathic pain or the pain that results from oversuse of incompletely recovered muscles....Many patients complain of persistent discomfort in their feet. This discomfort may take the form of tingling, an illusion of swelling or tightness or aching pain. The symptoms tend to be worse in the evening or at night...Neuropathic pain is particularly annoying during the nights that follow days during which the patients have been on their feet. Pain improves with time in some patients, but others are left with annoying or disabling pain that persists for years. Even though most patients recover their strength following GBS, some are left with persistent pain. Treatment for neuropathic pain is a challenge. Complete relief is difficult to relieve. "
I have to admit that sometimes it is a struggle because yes I look normal and yes I am functioning, but I am sure uncomfortable. The crazy thing is that from day to day it varies greatly. Yes, I have realized just how much my medicine is helping, but I sure realize how much more I need. I am so thankful that we found something that works, and I am in the process of trying to increase it to a level in which the side effects are not disabling.
Thank you! Thank you! to those that continue to surprise us with meals or help. God is so good to us!! Honestly, there are times in the midst of my pain when it seems exhausting to have to think or call someone for help. We so appreciate your prayers!!
My goal for the next blog------ My boys. Some have asked for a recent picture, and so I hope to show you my sweet boys. They are so funny and full of life.
Thursday, October 30, 2008
The battle is real!
There are many days and many moments when I have feel like I am in battle. Battling to remain hopeful, battling to recover, and battling to take care of my family amidst a body that doesn’t want to function properly. And especially battling through scripture and prayer when it feels like the enemy is wanting to devour me and my family. The battle has been more real to me and reading the psalms has helped me realize that David knew how fierce the battle could be. I am so thankful that he wrote his psalms (Ps 46,63) down because it has brought me incredible perspective, insight and has motivated me to fight. Like never before I find myself praying about everything big and small. I have been humbled sometimes when I realize that I should pray more for the little things. I had a great reminder of this last week.
I have needed to buy some pajamas and jeans for Bennett and it seems that it takes me forever to do errands like that right now. It all depends on what other activities we have and my pain levels whether I can do errands or not. I honestly didn’t pray about it, but knew it would eventually get done. Last week there was a box left at our house by my friend who has blessed us many other times with clothes. I probably don’t need to tell you what was in the box….. not one, but four pairs of pajamas and several pairs of pants. I admit, I was teary and so thankful. I often tease my friend and tell her that she must get memos from God because every time she brings clothes to us it is exactly what we need.
I am so glad that he cares for the big things too. I have been battling in prayer for Bennett too. Recently, we discovered he has a learning disability. We suspected this last year, but thought that with practice it would improve. God led us to go and have him assessed at the Baylor Speech clinic which gave us great insight into his needs. We were so thankful to have their expertise and were so humbled when he got a therapy spot for four hours each week. Yes, it is an adjustment and I feel like I am on a very steep learning curve. But the amazing thing is that because of my illness, my life has remained simple and I have time to learn. I really believe through prayer Bennett has adjusted very well to the therapy and I see benefits already. I find myself constantly having to give Bennett over to God knowing that he is in control and that he loves Bennett so much more than I do. There is no doubt that God gave Bennett a special personality for a reason. His laughter and smiles and even his made up songs and bad jokes have brought me joy during the hard days.
I read this quote recently which I thought captured it well
It puzzles me; but Lord, You understand
And will one day explain this crooked thing.
Meanwhile, I know that is has worked Your best
Its very crookedness taught me to cling.
So I will thank and praise You for this puzzle,
And trust where I cannot understand.
Rejoicing You hold me worth such testing,
I cling the closer to Your guiding hand.
I have needed to buy some pajamas and jeans for Bennett and it seems that it takes me forever to do errands like that right now. It all depends on what other activities we have and my pain levels whether I can do errands or not. I honestly didn’t pray about it, but knew it would eventually get done. Last week there was a box left at our house by my friend who has blessed us many other times with clothes. I probably don’t need to tell you what was in the box….. not one, but four pairs of pajamas and several pairs of pants. I admit, I was teary and so thankful. I often tease my friend and tell her that she must get memos from God because every time she brings clothes to us it is exactly what we need.
I am so glad that he cares for the big things too. I have been battling in prayer for Bennett too. Recently, we discovered he has a learning disability. We suspected this last year, but thought that with practice it would improve. God led us to go and have him assessed at the Baylor Speech clinic which gave us great insight into his needs. We were so thankful to have their expertise and were so humbled when he got a therapy spot for four hours each week. Yes, it is an adjustment and I feel like I am on a very steep learning curve. But the amazing thing is that because of my illness, my life has remained simple and I have time to learn. I really believe through prayer Bennett has adjusted very well to the therapy and I see benefits already. I find myself constantly having to give Bennett over to God knowing that he is in control and that he loves Bennett so much more than I do. There is no doubt that God gave Bennett a special personality for a reason. His laughter and smiles and even his made up songs and bad jokes have brought me joy during the hard days.
I read this quote recently which I thought captured it well
It puzzles me; but Lord, You understand
And will one day explain this crooked thing.
Meanwhile, I know that is has worked Your best
Its very crookedness taught me to cling.
So I will thank and praise You for this puzzle,
And trust where I cannot understand.
Rejoicing You hold me worth such testing,
I cling the closer to Your guiding hand.
Thursday, October 2, 2008
A day at a time
Once a week and it usually happens on a Thursday I have and need a rest (bed) day. To some it may seem like an inconvenience but for me it is a necessity and believe it or not usually a blessing. Several people have said to me that on the days that the boys are both at school I probably struggle not to do too much. Occasionally maybe but usually not. I have had to let go of a lot. No, I don't like to be in pain or feel terrible, but the days in bed are the ones when I learn the most. Those are the days when I do a lot of praying and thinking and reflecting.
One of my favorite times of day is at 830am. This is not because I have just dropped off Cody, but because that is when I listen to the Focus on the Family broadcast. Prior to my illness I did not listen and I wish I had. I have been so blessed and inspired by listening to different speakers. This morning was no exception as I listened to Dr. David Jeremiah talk about his new book"When your world falls apart". Listening to him talk about his battle with cancer and what he learned sure resonated with me. Not because I can relate to having cancer but about God's presence, peace and provision during something hard. Interestingly enough he is a speaker that really ministered to me during the first part of my illness. I find I can relate a lot more these days to people who are in pain and I think a great thing is that I am more willing to go to people's place of pain without being uncomfortable. There have been several times in the last month when I have thanked God for using my pain to minister to someone. No, I can't physically help people as much like I used to, but I sure can pray and encourage people.
The good news from the blood work I had done is that I do not have an inflammatory disease ie. lupus, rheumatoid arthritis etc. This leads us to believe that the pain and symptoms are still from my nerves recovering. I have to be honest and say that it has been hard to rest in my diagnoses mainly because some of my symptoms don't match up to the typical case of Guillian Barre. Following the most recent blood work I have had to make a decision to rest in what we know right now and take a day at a time. This past weekend I was more convinced than ever how much my medicine is helping. I was getting low on medicine and had not made it to the pharmacy to get my new prescription. I knew that Perry was going to go grocery shopping on Sunday and decided to wait until then. Unfortunately, I did not realize that the pharmacy closed early. I had no medicine to take at night and as a result slept very poorly because my legs where burning so bad. I am so thankful that we found something to help and I am trying to slowly increase it during the day to get more relief. Please pray that I will be able to tolerate it. From someone who never took medicine it is a big adjustment to constantly be thinking about when my next pill is due. This is an interesting season.
One of my favorite times of day is at 830am. This is not because I have just dropped off Cody, but because that is when I listen to the Focus on the Family broadcast. Prior to my illness I did not listen and I wish I had. I have been so blessed and inspired by listening to different speakers. This morning was no exception as I listened to Dr. David Jeremiah talk about his new book"When your world falls apart". Listening to him talk about his battle with cancer and what he learned sure resonated with me. Not because I can relate to having cancer but about God's presence, peace and provision during something hard. Interestingly enough he is a speaker that really ministered to me during the first part of my illness. I find I can relate a lot more these days to people who are in pain and I think a great thing is that I am more willing to go to people's place of pain without being uncomfortable. There have been several times in the last month when I have thanked God for using my pain to minister to someone. No, I can't physically help people as much like I used to, but I sure can pray and encourage people.
The good news from the blood work I had done is that I do not have an inflammatory disease ie. lupus, rheumatoid arthritis etc. This leads us to believe that the pain and symptoms are still from my nerves recovering. I have to be honest and say that it has been hard to rest in my diagnoses mainly because some of my symptoms don't match up to the typical case of Guillian Barre. Following the most recent blood work I have had to make a decision to rest in what we know right now and take a day at a time. This past weekend I was more convinced than ever how much my medicine is helping. I was getting low on medicine and had not made it to the pharmacy to get my new prescription. I knew that Perry was going to go grocery shopping on Sunday and decided to wait until then. Unfortunately, I did not realize that the pharmacy closed early. I had no medicine to take at night and as a result slept very poorly because my legs where burning so bad. I am so thankful that we found something to help and I am trying to slowly increase it during the day to get more relief. Please pray that I will be able to tolerate it. From someone who never took medicine it is a big adjustment to constantly be thinking about when my next pill is due. This is an interesting season.
Friday, September 19, 2008
God cares
It is so good to have reminders that God cares about the little things. Here are some recent examples.
1)Our boys are big "WipeOut" fans. Last week it was WipeOut night and the boys were eagerly anticipating their favorite show. What we didn't realize was that it was a two hour show that evening. When eight o'clock came and it was time for bed they were both in tears because they wouldn't be able see all of it. Finally we were able to console them with the fact that we would tape it and they could watch tomorrow. I was praying that the taping process would work properly or I would have some very upset boys. After they showered, I for some reason went to check the VCR and noticed that it was turned off. AHHH!! Perry often automatically turns it off at night and so he did it without thought. Well, thankfully not much time had elapsed and we were back on track. The absolutely amazing thing was that at exactly 900 the video tape ran out of tape. Both Perry and I realized that if he wouldn't have turned off the VCR the boys would have missed the best part of the show. Great reminder that God understands the big picture and we often do not! So glad he is control and I am not.
2)At the beginning of this week I had another neurologist visit and I had been praying that God would help me communicate my questions and concerns. I am so thankful that I found this new neurologist. He is such a good listener and very caring and asks good questions. I feel like he treats me like a person and not just a another patient or number.
We are thankful that the new medicine called Neurontin is helping me sleep at night and my headaches have lessened which is wonderful. The challenge has been finding relief during the day. My body hates activity. I have a lot of muscle fatigue, burning, tingling and deep aching. Some days it is more challenging then others, but it greatly affects my day and my ability to care for my family. There are symptoms that I just don't understand.
We would appreciate your prayers as we try to understand my symptoms and also try to find something to make me more comfortable. The good thing is that my doctor ordered a few more blood tests to investigate some avenues we had wondered before but had never explored.
Sorry, that was the backdrop to my "God cares" story. After my appointment I went next door to Providence to get my blood work done. I thought I had lots of time before I had to get Cody from preschool, but I was wrong. The crazy thing was that the admitting desk put it in the system I couldn't come back the next day. The admitting desk is downstairs and I didn't realize there was a long line upstairs at the lab. I needed help from God because I had already done a lot of walking and was hurting and I knew I would have to get Cody and come back up to the lab and possibly wait a long time. The receptionist didn't give me much hope that I could get in quickly even if I came back within the next hour. So, my strategy was to trust God, get Bush's chicken (that always helps) to keep my hungry five year old busy during the wait and hope for miracle. Guess what I found when I returned ...... two people waiting and a unusually patient son during the whole process. Thank you God for caring for little things!!!
1)Our boys are big "WipeOut" fans. Last week it was WipeOut night and the boys were eagerly anticipating their favorite show. What we didn't realize was that it was a two hour show that evening. When eight o'clock came and it was time for bed they were both in tears because they wouldn't be able see all of it. Finally we were able to console them with the fact that we would tape it and they could watch tomorrow. I was praying that the taping process would work properly or I would have some very upset boys. After they showered, I for some reason went to check the VCR and noticed that it was turned off. AHHH!! Perry often automatically turns it off at night and so he did it without thought. Well, thankfully not much time had elapsed and we were back on track. The absolutely amazing thing was that at exactly 900 the video tape ran out of tape. Both Perry and I realized that if he wouldn't have turned off the VCR the boys would have missed the best part of the show. Great reminder that God understands the big picture and we often do not! So glad he is control and I am not.
2)At the beginning of this week I had another neurologist visit and I had been praying that God would help me communicate my questions and concerns. I am so thankful that I found this new neurologist. He is such a good listener and very caring and asks good questions. I feel like he treats me like a person and not just a another patient or number.
We are thankful that the new medicine called Neurontin is helping me sleep at night and my headaches have lessened which is wonderful. The challenge has been finding relief during the day. My body hates activity. I have a lot of muscle fatigue, burning, tingling and deep aching. Some days it is more challenging then others, but it greatly affects my day and my ability to care for my family. There are symptoms that I just don't understand.
We would appreciate your prayers as we try to understand my symptoms and also try to find something to make me more comfortable. The good thing is that my doctor ordered a few more blood tests to investigate some avenues we had wondered before but had never explored.
Sorry, that was the backdrop to my "God cares" story. After my appointment I went next door to Providence to get my blood work done. I thought I had lots of time before I had to get Cody from preschool, but I was wrong. The crazy thing was that the admitting desk put it in the system I couldn't come back the next day. The admitting desk is downstairs and I didn't realize there was a long line upstairs at the lab. I needed help from God because I had already done a lot of walking and was hurting and I knew I would have to get Cody and come back up to the lab and possibly wait a long time. The receptionist didn't give me much hope that I could get in quickly even if I came back within the next hour. So, my strategy was to trust God, get Bush's chicken (that always helps) to keep my hungry five year old busy during the wait and hope for miracle. Guess what I found when I returned ...... two people waiting and a unusually patient son during the whole process. Thank you God for caring for little things!!!
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