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! : )
Wednesday, February 5, 2014
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.....
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