I have realized I have a lot of fears. That my fear in so many areas influence my life in HUGE ways. I know I need to combat my fears with faith. That even if what I fear happens God is bigger!
I feel challenged to do something everyday that I fear. I want to rely on God and not myself. That is how I can see God work in my life and then be used in the life of others.
One of my "silly" fears is of my daughter's bearded dragon. It is like 5 inches long and it scares me like crazy! I literally run out of the room when she brings it near me. I have screamed like I was dying if I get surprised by it. I am not using this as an example of needing faith. : ). But today I am going to hold this thing..... maybe! : )
Thursday, May 14, 2015
Friday, May 8, 2015
Broken
I started this blog to journal my journey with MS but also to encourage others who may or may not have an illness. I haven't posted in a long time because I think I wanted to only post how great I was doing and feeling. But the reality is that there are days I am not doing well. On those days I didn't want to whine and complain so I didn't write then either. But I believe that I am suppose to continue this blog..... so I am going to post as often as time allows.
Right now I am truthfully broken. I had another relapse last Friday and that is always followed by steroids, insomnia, and then some illness. Right now it feels like the flu. The worst part of this relapse is/was my mental state. I felt like quitting, but how? I can't just leave my body on the side of the road! I felt/feel useless.
I think we have all felt that way. What do I have to offer? What am I good at? I came to Christ insecure and ashamed of my past. Over time He showed me I was a new creation. I had gifts and there was great joy in using them to bless others. And I did use them, and I did have joy in it. But what about now I keep asking?
How can this broken body serve anyone? I am unreliable and barely have the strength some days to just care for my family. After three years why can't I have it together? These questions and doubts have been raging a war in my head for months now. And after that last relapse I just broke.....
I want to share that I am on the other side and that I have this great come back story but right now I don't. God is bringing me up out of this pit, but it has been slow and painful but this is where my faith comes in.
If you are hurting, struggling, doubting....I beg you to cry out for Christ. He will help you! Also allow others to love you.... don't hide out like I do... it only makes the pit deeper!
Right now I am truthfully broken. I had another relapse last Friday and that is always followed by steroids, insomnia, and then some illness. Right now it feels like the flu. The worst part of this relapse is/was my mental state. I felt like quitting, but how? I can't just leave my body on the side of the road! I felt/feel useless.
I think we have all felt that way. What do I have to offer? What am I good at? I came to Christ insecure and ashamed of my past. Over time He showed me I was a new creation. I had gifts and there was great joy in using them to bless others. And I did use them, and I did have joy in it. But what about now I keep asking?
How can this broken body serve anyone? I am unreliable and barely have the strength some days to just care for my family. After three years why can't I have it together? These questions and doubts have been raging a war in my head for months now. And after that last relapse I just broke.....
I want to share that I am on the other side and that I have this great come back story but right now I don't. God is bringing me up out of this pit, but it has been slow and painful but this is where my faith comes in.
If you are hurting, struggling, doubting....I beg you to cry out for Christ. He will help you! Also allow others to love you.... don't hide out like I do... it only makes the pit deeper!
Friday, June 20, 2014
Step one of the Wahls Diet
We started the first step of the Wahls Diet at the beginning of the week but my computer was acting silly so I was not able to use it and blog. So, here are some pictures of this week.
We have obviously eaten other meals BUT I forgot to take pictures of them. : ( So far this has been easy to adapt and tolerated by the kiddos! : )
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| I washed all the fruits and vegetables I needed for the week. |
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| Beef with Spicy Red Pepper Saute - Yummy! |
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| Curried Chicken and Grilled Coleslaw - Also yummy! |
Friday, June 13, 2014
Pressing On
Fears and failures. Those two things can really trip me up. I let my past failures dictate my today. I let the fear of future failures dictate my tomorrow. But this should not be so. I have the power of the Holy Spirit in me. That is some pretty powerful stuff! : ) In my quiet time this morning God just showed me how he wants me to overcome my fears and failures and press on. Not in my own strength, but by using His Spirit and His Word and to speak His truths over me and my family.
One fear is with my children. I fear that because of my past failures I have wrecked their future. First of all, I really don't have that type of power! : ) Also, what does God's word really say? "The Lord your God will change your heart and the hearts of all your descendants, so that you will love him with all your heart and soul and that you may live!" (Deut. 30:6) He also tells us he has plans for us to give us hope and a future, and that he can rebuild what has been destroyed. My children are in the Lord's hands and nothing and no one can snatch them away! I was talking to my oldest daughter and apologizing that I had made some mistakes that I thought effected her and her siblings and she stops me and says, "Mom, I think you are amazing, if you didn't make those mistakes then one of us kids probably would. We get to see what not to do. It's either you or us mom." Well if that's the case then I am glad it was me!! : )
I also fear about my health. What if I can't make the changes necessary? Am I then setting my family up for future disease? Why didn't I take better care of myself? How much more pain is in my future? Then I remember the complete and total blessing MS has been to my life. I would want it again. Because of MS I am able to learn about nutrition and our bodies and give my children knowledge they would have never had before. If/when pain comes on stronger I know God will be all the strength I need. "Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." (Deut 31:8)
I think Paul sums it up in Phil 3:12-14, "Not that I have already obtained all this, or have already been make perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."
One fear is with my children. I fear that because of my past failures I have wrecked their future. First of all, I really don't have that type of power! : ) Also, what does God's word really say? "The Lord your God will change your heart and the hearts of all your descendants, so that you will love him with all your heart and soul and that you may live!" (Deut. 30:6) He also tells us he has plans for us to give us hope and a future, and that he can rebuild what has been destroyed. My children are in the Lord's hands and nothing and no one can snatch them away! I was talking to my oldest daughter and apologizing that I had made some mistakes that I thought effected her and her siblings and she stops me and says, "Mom, I think you are amazing, if you didn't make those mistakes then one of us kids probably would. We get to see what not to do. It's either you or us mom." Well if that's the case then I am glad it was me!! : )
I also fear about my health. What if I can't make the changes necessary? Am I then setting my family up for future disease? Why didn't I take better care of myself? How much more pain is in my future? Then I remember the complete and total blessing MS has been to my life. I would want it again. Because of MS I am able to learn about nutrition and our bodies and give my children knowledge they would have never had before. If/when pain comes on stronger I know God will be all the strength I need. "Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." (Deut 31:8)
I think Paul sums it up in Phil 3:12-14, "Not that I have already obtained all this, or have already been make perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."
Wednesday, June 11, 2014
Phase 1
We are going to start making some changes in our family. I know some of these will be met with resistance and might be harder for my children since they are older...BUT I know that this is important and worth the effort. What I am learning and applying with not only help my children but my grandchildren as well. It is about making changes that positively effect future generations. I will effect them in some way...either good or bad...ever decision I make does, so I want to make good choices to help them not hurt them.
I listened to this great podcast with "Katie the Wellness Mama" and decided to use some of her ideas in my family. Right now, in this post, the changes I am talking about is "how" we eat our food. We are going to start implement Phase 1. Here is what our phase 1 is going to look like:
1. We will eat at least breakfast and dinner together. (Since it is summer most of us with have lunch together as well.)
2. We will have ONE meal and that meal will be served family style. (Food in center of table.) That is all the food that will be offered.
3. Our motto is try, try again. They only have to try one bite of all that is offered and then can eat what they prefer BUT each time a food is offered, even if they didn't like it last time, they will try it again.
4. No negative comments about any food served.
5. Food is fuel. It is not comfort, a reward, or used as discipline. Our kids are going to learn what foods help or hurt their body so that they can make wise choices when we are not around.
I know this all seems like a no brainer, but this is where we are starting. I want to reach their heart and minds as we are nurturing their bodies with all the great food God has given us.
I listened to this great podcast with "Katie the Wellness Mama" and decided to use some of her ideas in my family. Right now, in this post, the changes I am talking about is "how" we eat our food. We are going to start implement Phase 1. Here is what our phase 1 is going to look like:
1. We will eat at least breakfast and dinner together. (Since it is summer most of us with have lunch together as well.)
2. We will have ONE meal and that meal will be served family style. (Food in center of table.) That is all the food that will be offered.
3. Our motto is try, try again. They only have to try one bite of all that is offered and then can eat what they prefer BUT each time a food is offered, even if they didn't like it last time, they will try it again.
4. No negative comments about any food served.
5. Food is fuel. It is not comfort, a reward, or used as discipline. Our kids are going to learn what foods help or hurt their body so that they can make wise choices when we are not around.
I know this all seems like a no brainer, but this is where we are starting. I want to reach their heart and minds as we are nurturing their bodies with all the great food God has given us.
Monday, June 9, 2014
Getting focused
I am reading a book right now called "The Wahls Protocol." I have mentioned Dr. Wahls many times and if you haven't heard of her I highly recommend you do. She is very knowledgeable and encouraging. In this book she asks that you journal your recovery (from MS or any disease) and use it as a reminder of where you are right now (symptoms, pain, etc) so that you can see how far you have come. I thought my blog is the perfect place for that! I want to use this to remind myself of God's goodness and His healing in my life. So I do hope as I learn and as I heal it will be an encouragement and a challenge to everyone else. : )
To get started I need to list my current symptoms and just where I am right now:
We moved to Texas at the end of April and I think that stress had a major impact on my health. I am currently on two medications for pain but will be off one of them completely in two weeks. My pain in my feet has increased (only slightly) since and that is encouraging to me. I have switched from Tysabri to Techfidera. I have had side effects from Techfidera that include nausea and flushing. The flushing feels like someone has rubbed insulation all over my body, so it burns and stings. This is happening mostly in my face and sometimes in my arms and legs. This happens on and off throughout the day and lasts about an hour. Because of the stress of the move etc, my lesion on my spinal cord that effected my hands flared up again. My hands are in pain most of the day, making it hard to type or do my daughters' hair or even wring out a rag. They burn and feel weak and sometimes go numb. Because of this flare up I was given an oral steroid instead of the steroid infusions to see if it would work better. The pills come in 4mg tablets but I had to take 80mg twice a day for three days...so that was 20 pills each time! The side effects were nasty. It felt like someone was punching me in the back right where my kidneys were for those three days. I couldn't sleep and I spent one night with more nausea than I had ever felt before in my life. Sorry for how gross this is going to sound...BUT it also caused me to have some vaginal bleeding (mostly blood clots) for those three days. I am also weak and shaky but not sure what is causing that. This has all been happening over the past week. I am praising God that I was able to sleep the past two nights! I also feel bruised around my neck and shoulders. Ok, there it is!!! Believe me when I say this is NOT complaining or whining....I need to list my symptoms as I get started so that I can remember how well I am going to be doing in the future! : )
I KNOW without a doubt God is using this for good in my life. He can and will heal me in His timing and use this time in amazing ways for my children. I trust in His goodness and His wisdom. If he has allowed this in my life then I will praise Him for it and look with great expectations on what is to come. I pray for all those that are hurting and read this blog that you too will know God's love and provision and protection. "Come to me, all you who are weary and burdened, and I will give your rest." Matthew 11:28
To get started I need to list my current symptoms and just where I am right now:
We moved to Texas at the end of April and I think that stress had a major impact on my health. I am currently on two medications for pain but will be off one of them completely in two weeks. My pain in my feet has increased (only slightly) since and that is encouraging to me. I have switched from Tysabri to Techfidera. I have had side effects from Techfidera that include nausea and flushing. The flushing feels like someone has rubbed insulation all over my body, so it burns and stings. This is happening mostly in my face and sometimes in my arms and legs. This happens on and off throughout the day and lasts about an hour. Because of the stress of the move etc, my lesion on my spinal cord that effected my hands flared up again. My hands are in pain most of the day, making it hard to type or do my daughters' hair or even wring out a rag. They burn and feel weak and sometimes go numb. Because of this flare up I was given an oral steroid instead of the steroid infusions to see if it would work better. The pills come in 4mg tablets but I had to take 80mg twice a day for three days...so that was 20 pills each time! The side effects were nasty. It felt like someone was punching me in the back right where my kidneys were for those three days. I couldn't sleep and I spent one night with more nausea than I had ever felt before in my life. Sorry for how gross this is going to sound...BUT it also caused me to have some vaginal bleeding (mostly blood clots) for those three days. I am also weak and shaky but not sure what is causing that. This has all been happening over the past week. I am praising God that I was able to sleep the past two nights! I also feel bruised around my neck and shoulders. Ok, there it is!!! Believe me when I say this is NOT complaining or whining....I need to list my symptoms as I get started so that I can remember how well I am going to be doing in the future! : )
I KNOW without a doubt God is using this for good in my life. He can and will heal me in His timing and use this time in amazing ways for my children. I trust in His goodness and His wisdom. If he has allowed this in my life then I will praise Him for it and look with great expectations on what is to come. I pray for all those that are hurting and read this blog that you too will know God's love and provision and protection. "Come to me, all you who are weary and burdened, and I will give your rest." Matthew 11:28
Tuesday, May 13, 2014
When you are hurting....
I really want this blog to not only be for those with MS or for the family of those with MS. Of course this is a big part of my blog and my life but not the main part. The main part of my life is my relationship with Jesus. After that is my husband, my children, my parents, the rest of my family, etc... MS does affect these relationships but not as much as it used to. Why? Because of my hope! Hope that I will be healed, and if not healed then my hope in Christ to get me through. Everyone has hurts, everyone needs hope and encouragement, everyone needs ideas or tips or advice to get them started in the right direction, and everyone needs grace when the mess up. On Mother's Day I came up with this saying.... "I never fail, I just leave room for improvement!"
I will be having a lot of information about food and your health. I will most likely have a separate "tab" so that info will be in one spot to come back to. Be ready to be challenged in this area of food but also be ready to feel GREAT!!!
But first I want to share some great tips I wrote down from a sermon I listened to this morning.
When you are hurting (physically, mentally, something done to you, etc.):
1. Don't use that as an excuse for lack of self-control. Examples...eat whatever you want, say whatever you want, behave however you want....you get the idea. If you are talking to your children all nasty because you don't feel well and then someone you want to impress (friend, pastor, whoever) comes to your door you will quickly straighten up. If you have the self-control then, then you can have it anytime! : )
2. Don't withdraw or isolated yourself from others, sulk, or feel sorry for yourself. You can't be pitiful and powerful at the same time. Let your life be an example to others. Becoming upset because you feel alone only adds to your hurt.
3. Don't believe that God is punishing you for your past sins. Of course there are natural consequences for sin.....you speed and you have to pay a fine, or you steal and you have to go to jail for a certain amount of time. But when you confess your sins, God forgives you and forgets. He is not sitting around with a list of all you have done wrong and punishing you over and over again!
4. Don't give up and think there is no way out. Jesus is the way, the truth, and the life (John 14:6)....if you are lost then start there to find your way.
5. Keep your commitments and your word. There are days that something does happen to keep us from fulfilling our commitment but even then call and don't just not show up. But truthfully many times we just don't "feel" like it or it isn't "easy" for us and we decide to stay home instead. God always keeps His promises and for those of us who are Christians, we are to be an example of Him to others. For those who are not Christians....no one forced you to say yes or volunteer so keep your promises as well! : )
6. Fight against the hurt and do something good for someone else. There is such a healing power when we take the focus off ourselves and help someone else.
I know that life can be hard and we do need someone we can vent to and lean on, but it is not good to stay there....and btw....all that I blog about I am saying right back at myself because I need to remember this as well!! : )
I will be having a lot of information about food and your health. I will most likely have a separate "tab" so that info will be in one spot to come back to. Be ready to be challenged in this area of food but also be ready to feel GREAT!!!
But first I want to share some great tips I wrote down from a sermon I listened to this morning.
When you are hurting (physically, mentally, something done to you, etc.):
1. Don't use that as an excuse for lack of self-control. Examples...eat whatever you want, say whatever you want, behave however you want....you get the idea. If you are talking to your children all nasty because you don't feel well and then someone you want to impress (friend, pastor, whoever) comes to your door you will quickly straighten up. If you have the self-control then, then you can have it anytime! : )
2. Don't withdraw or isolated yourself from others, sulk, or feel sorry for yourself. You can't be pitiful and powerful at the same time. Let your life be an example to others. Becoming upset because you feel alone only adds to your hurt.
3. Don't believe that God is punishing you for your past sins. Of course there are natural consequences for sin.....you speed and you have to pay a fine, or you steal and you have to go to jail for a certain amount of time. But when you confess your sins, God forgives you and forgets. He is not sitting around with a list of all you have done wrong and punishing you over and over again!
4. Don't give up and think there is no way out. Jesus is the way, the truth, and the life (John 14:6)....if you are lost then start there to find your way.
5. Keep your commitments and your word. There are days that something does happen to keep us from fulfilling our commitment but even then call and don't just not show up. But truthfully many times we just don't "feel" like it or it isn't "easy" for us and we decide to stay home instead. God always keeps His promises and for those of us who are Christians, we are to be an example of Him to others. For those who are not Christians....no one forced you to say yes or volunteer so keep your promises as well! : )
6. Fight against the hurt and do something good for someone else. There is such a healing power when we take the focus off ourselves and help someone else.
I know that life can be hard and we do need someone we can vent to and lean on, but it is not good to stay there....and btw....all that I blog about I am saying right back at myself because I need to remember this as well!! : )
Thursday, May 1, 2014
Big Move!
So we made the move back to Texas last week! : ) MANY factors went into this decision. One major reason was my MS. We always knew that we wanted to move back here once we retired...that we wanted to "finish" here. We thought it would be after the kids all graduated high school. A little back story....my husband and I were both in the Marine Corps (me for four years and my husband for 8) and have moved 10 times since we have been married and each of us moved 4 times before that!!!! I have been a stay at home mom since I have been out of the Corps and my husband has a job that is very mobile. We have always LOVED moving and were living in Iowa by my parents for the last three years. We thought we would stay there (we do have choices with my husband's job), but that all changed once I was diagnosed.
One of the hardest things for me about living in Iowa was the winter. Shoes really really hurt my feet. The first winter of MS I wore nothing but flip flops....that didn't turn out well for my feet either! I got infections in my toe nails and a few times I thought I got frost bite! : ) Sooooo my doctor told me not to do that again this past winter! heh heh It was one of the coldest and longest winters Iowa had seen in years. Schools were closed because of cold NOT snow! Needless to say I had to wear shoes a lot. This made my feet hurt so bad that I ended up not leaving my house unless it was completely necessary. I am very social so that was mentally and emotionally very difficult. : (
Matt and I started thinking that maybe we needed to move back to Texas earlier that we had planned. We started praying about it and God just opened every door and FAST! We got the first job Matt inquired about and sold our house in one day! : ) The move itself has been exhausting! With the help of friends and family we packed ourselves up, drove two moving trucks and one van 1150 miles, and are in the process now of unpacking...all in the last two weeks! : )
It is great to be back here and to feel "settled." We do not plan/want to move again....even though my family thinks we will based on all our other moves! heh heh Another little side note...we lived in Texas about 2 1/2 years before me moved to Iowa. We loved Texas then too, but really felt God calling us to move back around family. We are so glad we did! We got to be a home for my brother when he needed it, Matt was able to "officiate" my uncle's funeral, and my children were able to bond with grandparents and spend the night at their house at least once a week. : )
I am going to have to make some big medical decisions because my neurologist here gave me some ideas that I think are valid.....I will blog more about that later....
One of the hardest things for me about living in Iowa was the winter. Shoes really really hurt my feet. The first winter of MS I wore nothing but flip flops....that didn't turn out well for my feet either! I got infections in my toe nails and a few times I thought I got frost bite! : ) Sooooo my doctor told me not to do that again this past winter! heh heh It was one of the coldest and longest winters Iowa had seen in years. Schools were closed because of cold NOT snow! Needless to say I had to wear shoes a lot. This made my feet hurt so bad that I ended up not leaving my house unless it was completely necessary. I am very social so that was mentally and emotionally very difficult. : (
Matt and I started thinking that maybe we needed to move back to Texas earlier that we had planned. We started praying about it and God just opened every door and FAST! We got the first job Matt inquired about and sold our house in one day! : ) The move itself has been exhausting! With the help of friends and family we packed ourselves up, drove two moving trucks and one van 1150 miles, and are in the process now of unpacking...all in the last two weeks! : )
It is great to be back here and to feel "settled." We do not plan/want to move again....even though my family thinks we will based on all our other moves! heh heh Another little side note...we lived in Texas about 2 1/2 years before me moved to Iowa. We loved Texas then too, but really felt God calling us to move back around family. We are so glad we did! We got to be a home for my brother when he needed it, Matt was able to "officiate" my uncle's funeral, and my children were able to bond with grandparents and spend the night at their house at least once a week. : )
I am going to have to make some big medical decisions because my neurologist here gave me some ideas that I think are valid.....I will blog more about that later....
Wednesday, February 5, 2014
My words
My words really matter! If I SAY I am tired well then I will probably BE tired! It isn't that I have to be "fake" but I don't need to complain and express every single issue at the moment. Philippians 2:14-15 "Do everything without complaining or arguing, so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe..." My mouth needs to be glorifying God. : )
Why this is so convicting to me is that I have started new infusions. I am taking a MS medicine called Tysabri. I have had 4 infusions now. I have them every 4 weeks. And.....they cause me to be tired. I think that for the past couple of months that is all I have been talking about....how tired I am. My new approach is glorify the Lord and take the focus off me! : )
Why this is so convicting to me is that I have started new infusions. I am taking a MS medicine called Tysabri. I have had 4 infusions now. I have them every 4 weeks. And.....they cause me to be tired. I think that for the past couple of months that is all I have been talking about....how tired I am. My new approach is glorify the Lord and take the focus off me! : )
Saturday, January 11, 2014
My Life Lessons
I am going to write the different things I am learning and/or doing in my life. Some may be about MS and some won't. As I have been reminded again lately....I am not defined by my MS. It is not who I am! : ) Some things I write might be from what God is teaching me during my quiet times, my devotional book, or a recent sermon. If ya'll ever want to know more about what I am learning just message me and I will give you exactly where it is from so you can dig deeper on your own.
Today my lesson is on jealousy and grace. I am jealous that other people I know are not sick. That sounds awful but it is true. Right now I am looking for easy and that "seems" easier. BUT God isn't letting me stay there. I am learning that His Grace will be there for me and that I need to be on my knees more asking Him to change my heart and my mind. I need eyes to see past this and know that He is working on my behalf right now.
(1 Peter 5:10) I am thankful that through this suffering (some caused by my own actions) that God will form me into who I am supposed to be!
Today my lesson is on jealousy and grace. I am jealous that other people I know are not sick. That sounds awful but it is true. Right now I am looking for easy and that "seems" easier. BUT God isn't letting me stay there. I am learning that His Grace will be there for me and that I need to be on my knees more asking Him to change my heart and my mind. I need eyes to see past this and know that He is working on my behalf right now.
(1 Peter 5:10) I am thankful that through this suffering (some caused by my own actions) that God will form me into who I am supposed to be!
Sunday, October 6, 2013
Attitude Change
This has been such an amazing wonderful week. And it isn't cuz I feel better. Actually I have been sick and my husband thinks I have walking pneumonia! : ) I smile cuz it doesn't matter! What matters is my attitude change. Every morning I have woken up with such joy and excitement for my day, even though I can't breathe super great. God has been so alive and drawing me to Him that how I "feel" is so miner. Peace has returned to my home and I just want to praise God all day long for His work in me. I needed severe correction and that I got! But then I was showered in mercy and grace and love....what a wonderful God we serve!
Wednesday, October 2, 2013
More than MS
I am glad I got a comment that reminded me that I am more than MS. It doesn't have to consume my life, my talk, or even my blog! : ) I will use this blog to update any medical things going on in our family due to MS but as this flare-up settles down I am wanting to continue this blog for more.....not sure for what more yet! : )
That being said, I do have some "medical" things to update. The spinal fluid did come back with the MS proteins, so there is no more waiting to make sure I have MS. It is official! Because it is official I have to start MS medication. After researching them....considering their effectiveness, years of research, amount of damage done to liver/kidneys, cost, side effects, etc., we have narrowed it down to two. One is a daily shot injection called Copaxone. It has been around for over 20 yrs, no damage to liver/kidneys, and has mild flu like side effects. The second is a monthly IV. As awful as this sounds I can not remember the name...it starts with a D. : ) I would go in once a month for 2 hrs and the first hour is for the IV, and then they have to monitor you an hour afterwards because I believe you have some flu like side effects as well. Now the IV is also twice as effective as the Copaxone, which is another reason I like it....plus no daily needles for me! : ) Here is the hangup with the IV. 60% of us will contract a virus in our lifetime called the JC virus. It just feels like you have a cold, and then the virus lies dormant in your brain. The medicine in the IV actually causes that virus to "awaken" and that cause serious brain infections and possible death. So I have taken a blood test to see if I carry this virus. If I am positive I have will remain on the Copaxone. If I am negative we will go through the process of starting the IV treatment. This may take a month or so, so either way as soon as my Copaxone comes in the mail I will begin my daily shots. I will then have blood tests done every 6 months to check and see if I have the JC virus, since I can still get it in my lifetime. Sorry if that was confusing! : )
I want to also add this amazing song to this post. A sweet friend blessed me with this and I think it is amazing! : ) I want my trust to know no borders!
That being said, I do have some "medical" things to update. The spinal fluid did come back with the MS proteins, so there is no more waiting to make sure I have MS. It is official! Because it is official I have to start MS medication. After researching them....considering their effectiveness, years of research, amount of damage done to liver/kidneys, cost, side effects, etc., we have narrowed it down to two. One is a daily shot injection called Copaxone. It has been around for over 20 yrs, no damage to liver/kidneys, and has mild flu like side effects. The second is a monthly IV. As awful as this sounds I can not remember the name...it starts with a D. : ) I would go in once a month for 2 hrs and the first hour is for the IV, and then they have to monitor you an hour afterwards because I believe you have some flu like side effects as well. Now the IV is also twice as effective as the Copaxone, which is another reason I like it....plus no daily needles for me! : ) Here is the hangup with the IV. 60% of us will contract a virus in our lifetime called the JC virus. It just feels like you have a cold, and then the virus lies dormant in your brain. The medicine in the IV actually causes that virus to "awaken" and that cause serious brain infections and possible death. So I have taken a blood test to see if I carry this virus. If I am positive I have will remain on the Copaxone. If I am negative we will go through the process of starting the IV treatment. This may take a month or so, so either way as soon as my Copaxone comes in the mail I will begin my daily shots. I will then have blood tests done every 6 months to check and see if I have the JC virus, since I can still get it in my lifetime. Sorry if that was confusing! : )
I want to also add this amazing song to this post. A sweet friend blessed me with this and I think it is amazing! : ) I want my trust to know no borders!
Sunday, September 29, 2013
Sorry and Thank You
I just had to write a little post to say sorry and thank you. I need to apologize for my attitude the past few months. I haven't posted so this really is for my friends and family here and I have already apologized to many of them in person. But, I still felt that I should just blog it also as a way to remind myself of where my heart was this summer.
I really became bitter this summer over many things...where we lived, not feeling well, etc. I took my eyes off Christ and focused them completely on myself. So this is where the thank you comes in. I am so thankful for my close friends and family who didn't give up on me. They still called me and checked in on me. I am very grateful and as they days/months go by, I am excited to see what plans God has for our family here or wherever he leads us! : )
I really became bitter this summer over many things...where we lived, not feeling well, etc. I took my eyes off Christ and focused them completely on myself. So this is where the thank you comes in. I am so thankful for my close friends and family who didn't give up on me. They still called me and checked in on me. I am very grateful and as they days/months go by, I am excited to see what plans God has for our family here or wherever he leads us! : )
Wednesday, September 25, 2013
Hope is what I crave!
This song was given to me by a very sweet friend. The lyrics are so true! We all need hope no matter where we are in our life right now. This weekend I needed hope that God had not forgotten me....and He showed up. I know that is because so many people lifted me up this weekend when I couldn't even lift up my own prayers. I would like to say that I feel great again, but I don't. I have to take some high doses of steroids orally for the rest of this week and then decrease them next week. I am sick to my stomach almost all day and night BUT I am not without hope. I needed to be reminded that God is still here with me even through all of this pain and sickness. He hasn't left me or forgotten me. : )
Sunday, September 22, 2013
Hard to write about
I am not sure why this blog is so hard to write. Maybe because I haven't blogged anything personal and painful in such a long time. Maybe I am just tired of MS. Tired of talking about it....tired of having it. Tired of feeling like a burden and a disappointment to my husband, family, and friends.
This has been a very long and very painful week. To explain why I have to start about three weeks ago. I was awaken from my sleep one night with this burning in my hands. I thought how weird this was....but then I remembered how for about two or three weeks before that, I had been waking up with my hands all stiff and painful and feeling like they were swollen but they weren't.....and how they had been sort of shakey. Then all of a sudden this thought popped in my head...."Oh no, God please no....don't let this be another flare up....not my hands!" I cried myself back to sleep that night. Night after night my hands would burn and the only thing that would help would be to make sure they were not under any covers, just like my feet. So after a few weeks I called my neurologist. They scheduled an appointment with me right away and then schedule a brain and spinal MRI to check for more brain lesions. This all happened two weeks ago. The MRI's showed no new lesions....so I thought it was all over....no new flare-up. Then a week ago from Friday my doctor said that where the lesions would be in my brain are very hard to see. They can hide in the MRI's and not show up but are still there. He wanted to run some more texts....this is how the painful week started.
On Wednesday, I had a EMG. This is where they send electrical shocks through your arm. They start low around your wrist and then move up to your elbow. It hurts. Then they stick needles into the muscles of your hands, wrist and arms and have you contract your muscles. And that hurts. That test showed that my nerves and muscles in my hands and arms were working great. So that led my doctor to believe that the signals were getting messed up in my spine and that I did possible have a lesion somewhere in the brain. So the last test he wanted to schedule was a lumbar puncture. That was scheduled for two days ago.
I have to admit that I did something awful on Friday.....I lied to my dad and to my husband. I told each of them that the other was taking me to this test and went by myself. (fyi.....I have already apologized to each of them) I am not sure why it was so important for me to do this myself. Maybe I just thought that I wanted to handle this by myself from now on? Maybe I thought they really didn't want to go and just felt obligated? I don't know. Anyway, Friday at 9:30 I was curled up in a ball on the table getting my first shots to numb the area of my lower where they were going to stick a needle in and remove 10cc of my spinal fluid. It is about a 20 to 25 min process. About two minutes into it everything turned awful. I started all at once to turn white (I only know this because the nurse kept saying it to my doctor), start shaking, start sweating, dry heaving, and crying. This all lasted for about 20 mins straight. About 15 mins after the test they had to draw blood. The first nurse tried 5 times but my veins blew each time. She kept apologizing (she was the same nurse that was in there for the spinal puncture) and felt awful. Then a different nurse tried and blew two more veins. So she said over and over I am so sorry but I need to draw the blood and the only place left is the inside of your wrist. She told me she had only done this once before because it is a last resort because it is painful. She was right! I had to stay there for an hour and then got to come home and rest for about 45 mins, grab a bite to eat, lock myself in my bedroom and cry, and then drive back to the hospital to start my steroid infusions.
You are supposed to have your blood drawn before your infusions to check your sugar and potassium levels but thankfully the nurse who drew the blood from my wrist drew extra and they had enough left over to run the tests! The nurse who started my infusions was so sweet. I thought I was done crying for the day but she asked my if I had any kids and I started bawling. I couldn't talk for about 10 mins. I kept thinking of my kids at home all day by themselves while I was here at the hospital. Why were they stuck with me....they deserved so much more! After I settled down she tried to start the IV in my hand and I just started screaming because the pain was crazy. The vein had blown and after seeing all the bruises already on my hands and arms she decided the best place was right in the bend of my arm. It is a very uncomfortable place. The infusions take about 2 hours and since it is a LOT of steroids your body can react different ways. For me, I get an awful metallic taste in my mouth the rest of the day which makes eating hard and I get sick to my stomach. My lower back was also feeling very sore and having small contraction-like pains every 1/2 hr or so from the lumbar puncture. I got home Friday night at about 5 and had already planned a party at my house from 6 to 7 that I didn't want to cancel at the last minute. So I got the house ready, had the party, and then about 8 went up to bed. By then my IV in my arm was hurting (I kept it in so I would have to be poked again on Saturday) and I literally begged Matt to pull it out. He said no! Then my back was contracting every few minutes and I couldn't rest at all. I ended up taking lots of pain medicine and Benadryl to fall asleep.
Saturday I had the girls' soccer games in the morning and back to the hospital at noon. Matt left right after I did to go to Chicago until Monday night for work. I am glad he is getting a break from all of this....he needs some time to himself! : ) They had to take blood this time and went straight for the inside of my wrist again....OUCH! Then I got hooked up and my infusions started again. One of my twins went with me and we cuddled on the chair and watched some movies and it was sweet. I once again had the metallic taste and upset stomach. I had the nurse take out the IV yesterday because I couldn't stand the thought of another day with that thing in my arm!
I have to go back today for the last infusion at noon. I don't want to go. I want to stay in my bed all day and hide from the needles waiting for me. I know I sound like a baby but I have reached my limit with all of this. I write this VERY long blog to simple ask for prayer. Obviously I need prayer for the courage to go back today! : ) But also for something more...for my heart. My heart is so cold right now and I feel left by God. I just feel hopeless. I know in my head God never leaves us and always has a plan for us but my heart doesn't feel it at all. I desire closeness with my Savior but feel like I am just disappointing Him as well. Thank you to all who feel led to pray for me and my family.....
This has been a very long and very painful week. To explain why I have to start about three weeks ago. I was awaken from my sleep one night with this burning in my hands. I thought how weird this was....but then I remembered how for about two or three weeks before that, I had been waking up with my hands all stiff and painful and feeling like they were swollen but they weren't.....and how they had been sort of shakey. Then all of a sudden this thought popped in my head...."Oh no, God please no....don't let this be another flare up....not my hands!" I cried myself back to sleep that night. Night after night my hands would burn and the only thing that would help would be to make sure they were not under any covers, just like my feet. So after a few weeks I called my neurologist. They scheduled an appointment with me right away and then schedule a brain and spinal MRI to check for more brain lesions. This all happened two weeks ago. The MRI's showed no new lesions....so I thought it was all over....no new flare-up. Then a week ago from Friday my doctor said that where the lesions would be in my brain are very hard to see. They can hide in the MRI's and not show up but are still there. He wanted to run some more texts....this is how the painful week started.
On Wednesday, I had a EMG. This is where they send electrical shocks through your arm. They start low around your wrist and then move up to your elbow. It hurts. Then they stick needles into the muscles of your hands, wrist and arms and have you contract your muscles. And that hurts. That test showed that my nerves and muscles in my hands and arms were working great. So that led my doctor to believe that the signals were getting messed up in my spine and that I did possible have a lesion somewhere in the brain. So the last test he wanted to schedule was a lumbar puncture. That was scheduled for two days ago.
I have to admit that I did something awful on Friday.....I lied to my dad and to my husband. I told each of them that the other was taking me to this test and went by myself. (fyi.....I have already apologized to each of them) I am not sure why it was so important for me to do this myself. Maybe I just thought that I wanted to handle this by myself from now on? Maybe I thought they really didn't want to go and just felt obligated? I don't know. Anyway, Friday at 9:30 I was curled up in a ball on the table getting my first shots to numb the area of my lower where they were going to stick a needle in and remove 10cc of my spinal fluid. It is about a 20 to 25 min process. About two minutes into it everything turned awful. I started all at once to turn white (I only know this because the nurse kept saying it to my doctor), start shaking, start sweating, dry heaving, and crying. This all lasted for about 20 mins straight. About 15 mins after the test they had to draw blood. The first nurse tried 5 times but my veins blew each time. She kept apologizing (she was the same nurse that was in there for the spinal puncture) and felt awful. Then a different nurse tried and blew two more veins. So she said over and over I am so sorry but I need to draw the blood and the only place left is the inside of your wrist. She told me she had only done this once before because it is a last resort because it is painful. She was right! I had to stay there for an hour and then got to come home and rest for about 45 mins, grab a bite to eat, lock myself in my bedroom and cry, and then drive back to the hospital to start my steroid infusions.
You are supposed to have your blood drawn before your infusions to check your sugar and potassium levels but thankfully the nurse who drew the blood from my wrist drew extra and they had enough left over to run the tests! The nurse who started my infusions was so sweet. I thought I was done crying for the day but she asked my if I had any kids and I started bawling. I couldn't talk for about 10 mins. I kept thinking of my kids at home all day by themselves while I was here at the hospital. Why were they stuck with me....they deserved so much more! After I settled down she tried to start the IV in my hand and I just started screaming because the pain was crazy. The vein had blown and after seeing all the bruises already on my hands and arms she decided the best place was right in the bend of my arm. It is a very uncomfortable place. The infusions take about 2 hours and since it is a LOT of steroids your body can react different ways. For me, I get an awful metallic taste in my mouth the rest of the day which makes eating hard and I get sick to my stomach. My lower back was also feeling very sore and having small contraction-like pains every 1/2 hr or so from the lumbar puncture. I got home Friday night at about 5 and had already planned a party at my house from 6 to 7 that I didn't want to cancel at the last minute. So I got the house ready, had the party, and then about 8 went up to bed. By then my IV in my arm was hurting (I kept it in so I would have to be poked again on Saturday) and I literally begged Matt to pull it out. He said no! Then my back was contracting every few minutes and I couldn't rest at all. I ended up taking lots of pain medicine and Benadryl to fall asleep.
Saturday I had the girls' soccer games in the morning and back to the hospital at noon. Matt left right after I did to go to Chicago until Monday night for work. I am glad he is getting a break from all of this....he needs some time to himself! : ) They had to take blood this time and went straight for the inside of my wrist again....OUCH! Then I got hooked up and my infusions started again. One of my twins went with me and we cuddled on the chair and watched some movies and it was sweet. I once again had the metallic taste and upset stomach. I had the nurse take out the IV yesterday because I couldn't stand the thought of another day with that thing in my arm!
I have to go back today for the last infusion at noon. I don't want to go. I want to stay in my bed all day and hide from the needles waiting for me. I know I sound like a baby but I have reached my limit with all of this. I write this VERY long blog to simple ask for prayer. Obviously I need prayer for the courage to go back today! : ) But also for something more...for my heart. My heart is so cold right now and I feel left by God. I just feel hopeless. I know in my head God never leaves us and always has a plan for us but my heart doesn't feel it at all. I desire closeness with my Savior but feel like I am just disappointing Him as well. Thank you to all who feel led to pray for me and my family.....
Sunday, September 15, 2013
Herbalife
I have been doing research this past year into nutrition and what my body needs with MS. About 4 months ago I came across a nutrition club in my area that sold Herbalife shakes. After researching this company I learned that it was amazing! It is ran by a panel of doctors who know nutrition! I have decided to become a distributor and wanted to encourage everyone to check out my website, https://www.goherbalife.com/jamibarden/en-US. This isn't just about "money" for me....I think EVERYONE could benefit from these awesome products! Enjoy! : )
Tuesday, April 16, 2013
Wednesday, April 10, 2013
LOVE
I have been really trying to teach my kiddos about the importance of love. Not the "love this shirt" or "love my dog" kind of love, but the love Christ talks about in John 13:34-35. It reads, "A new command I give you: Love one another. As I have loved you, so you must love one another. By this all men will know you are my disciples, if you love one another." And how did Christ love us....well John 3:16 says he loved us so much that he died for us.
Since most of us are not going to physically die for each other, we are told in 1 Corin 13: 1-13 how we are supposed to love. This passage isn't just to be read at marriages and then forgotten about. Paul wrote this to tell us how we are to love others, and this is whether they "deserve" it or not!
As y'all know I "love" music! : ) So here is a song that I was using this morning to once again talk to my children about true Christlike love:
btw...don't get caught up in the video if it is different then you thought it would be...try to just listen to the lyrics! : )
Since most of us are not going to physically die for each other, we are told in 1 Corin 13: 1-13 how we are supposed to love. This passage isn't just to be read at marriages and then forgotten about. Paul wrote this to tell us how we are to love others, and this is whether they "deserve" it or not!
As y'all know I "love" music! : ) So here is a song that I was using this morning to once again talk to my children about true Christlike love:
btw...don't get caught up in the video if it is different then you thought it would be...try to just listen to the lyrics! : )
Monday, April 8, 2013
Brutal birthdays and answered prayers
My birthday was last month and I was completely dreading it. Not because of getting older....so far that hasn't bothered me! : ) It was because it was this time last year that I got my first major MS symptoms (I say major because looking back my husband and I think there were a few minors signs we missed). My neurologist said that medically they would be calling this permanent in one year....and obviously I know only God has that final say....thankfully!! But regardless I was still really upset and almost didn't want to acknowledge my birthday at all.
God was really gracious and with the support of my husband and family and with the busyness of our move my birthday came and went great......well almost! Three days before my birthday me and the kiddos got into a minor car accident. So I tell you this not as a "woe is me" but as something almost funny. Two days after this accident and one day before my birthday I woke up and got dressed and then as I was just putting my shirt on I fell to my knees in extreme pain. I couldn't move my right arm and pain was shooting down my neck and into my right shoulder. We were in the middle of our move and I couldn't help or do anything so my mom suggested I go back to the chiro I was seeing last fall for my MS.
Sorry this is getting longer than I had planned! : ) LONG story short....I had been praying that we would be able to afford me going back to the chiro for adjustments, massage therapy, and acupuncture....things that had REALLY helped me deal with my pain. That is one reason we moved and downsized our home. BUT because of this accident my car insurance is paying for my treatment with NO co-pays or without raising our premiums. : ) WOOHOO!
What is funny is that it was right around my birthday again this year.....so I am kinda wondering what craziness I will encounter next March?! And in case you are wondering....all the kiddos are seeing the chiro as well for some minor adjustments, but are doing great and should have no lasting injuries. : )
God was really gracious and with the support of my husband and family and with the busyness of our move my birthday came and went great......well almost! Three days before my birthday me and the kiddos got into a minor car accident. So I tell you this not as a "woe is me" but as something almost funny. Two days after this accident and one day before my birthday I woke up and got dressed and then as I was just putting my shirt on I fell to my knees in extreme pain. I couldn't move my right arm and pain was shooting down my neck and into my right shoulder. We were in the middle of our move and I couldn't help or do anything so my mom suggested I go back to the chiro I was seeing last fall for my MS.
Sorry this is getting longer than I had planned! : ) LONG story short....I had been praying that we would be able to afford me going back to the chiro for adjustments, massage therapy, and acupuncture....things that had REALLY helped me deal with my pain. That is one reason we moved and downsized our home. BUT because of this accident my car insurance is paying for my treatment with NO co-pays or without raising our premiums. : ) WOOHOO!
What is funny is that it was right around my birthday again this year.....so I am kinda wondering what craziness I will encounter next March?! And in case you are wondering....all the kiddos are seeing the chiro as well for some minor adjustments, but are doing great and should have no lasting injuries. : )
Monday, March 4, 2013
My Psalm
I know I post a lot of songs, but after God's word, they are what really reach my heart and minister to my soul.....
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