Last Wednesday and Thursday I went to the gym to work with someone who is helping me start gaining my strength back. It is going really well! We are just starting with some stretches and other things (I don't really know what they're called..). We're starting out slow so it's only 30 minutes each time I go. I'm really enjoying it! We talk the whole time and it makes it go by super fast. I'm looking forward to Wednesday when I go again!!
My family is actually going on vacation this week! We leave on Thursday and are going to Disney World! It's one of our favorite places. We haven't been since I got really sick. There have been a couple of times that we've tried to go, but it just hasn't worked out. But we are going on Thursday and will be gone until the next Wednesday. I am so excited!!!!
We are still waiting for the nurse to call about coming to access my port so hopefully she'll call within the next couple of days.
I hope you're having a good day!
Sunday, July 31, 2011
Tuesday, July 26, 2011
Life lately
Most of my friends are on the high school mission trip in Memphis this week, so I've just been hanging out. I went to church on Sunday but then came home because I wasn't feeling the best. I haven't been sleeping too well, so that's probably why.
I went to the doctor today to talk about several things. On Sunday night, my back and leg started hurting a lot and went numb. We suspected that it is my sciatic nerve and doctor said she agrees. I'm on a strong anti-inflammatory and am stretching to try and help it. I'm still having shooting pains down my leg and it goes numb a lot.
She said that I can go up on the Amitriptyline(sleep/pain medicine) to try and get me sleeping better. We have been taking things slow with medicine since the ICU episode.
She said that I can go up on the Amitriptyline(sleep/pain medicine) to try and get me sleeping better. We have been taking things slow with medicine since the ICU episode.
My mom has accessed my port since I got it almost 2 years ago. She was taught by the home care nurses and has done it ever since! A couple weeks ago she tried to access my port because it was time to flush it with saline and heparin so that it doesn't get a blood clot, and she couldn't get it in. The port kept moving around and after a couple of unsuccessful tries, we gave up. It hurt a lot and it doesn't usually do that. So I asked the doctor today if someone there could try it, but no one was comfortable doing it. They are going to send out home health nurses as soon as possible to come access it.
Tomorrow I am going to start training with a personal trainer. She goes to church with us, and will help me start building up my strength. I'm not really sure about what we will be doing, but it will be good to start that!
I've been looking for dorm stuff and my roommate and I have gotten our bedding and a few other things! It's so exciting!!!!
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand." Isaiah 41:10
This is a song by Peter Furler that I love!
" You hold the weight of the world
Still I don't slip through Your hands
Your love is bigger
Than just a notion built by man
I fall again and again,
But you whisper, “You're still mine.”
You feel the pain of the world,
But you never push mine aside.
(Chorus)
And You reach for me
With a love that quiets all my fears
And You reach for me
Like a Father wipes away the tears
So many people in this world,
But I hear You calling out my name.
You reach for me.
Now I'm never gonna be the same.
You know all of my fears
There's nothing Your eyes can't see.
When I tried to give up,
Lord, You never gave up on me.
I give You all of my hopes and dreams,
I lay them down.
Of all the place I've looked,
You're the one truth I have found.
Chorus
You hold the weight of the world,
Still I don't slip through Your hands.
You put the stars in the sky.
You know every grain of sand.
Chorus
You reach for me.
For me."
I've been looking for dorm stuff and my roommate and I have gotten our bedding and a few other things! It's so exciting!!!!
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand." Isaiah 41:10
This is a song by Peter Furler that I love!
" You hold the weight of the world
Still I don't slip through Your hands
Your love is bigger
Than just a notion built by man
I fall again and again,
But you whisper, “You're still mine.”
You feel the pain of the world,
But you never push mine aside.
(Chorus)
And You reach for me
With a love that quiets all my fears
And You reach for me
Like a Father wipes away the tears
So many people in this world,
But I hear You calling out my name.
You reach for me.
Now I'm never gonna be the same.
You know all of my fears
There's nothing Your eyes can't see.
When I tried to give up,
Lord, You never gave up on me.
I give You all of my hopes and dreams,
I lay them down.
Of all the place I've looked,
You're the one truth I have found.
Chorus
You hold the weight of the world,
Still I don't slip through Your hands.
You put the stars in the sky.
You know every grain of sand.
Chorus
You reach for me.
For me."
Sunday, July 24, 2011
Baptisms
The past several weeks have been so encouraging! At the Jr High church camp, there were 7 or 8 (I think, from what my brother says) middle schoolers baptized! The next Sunday at church there were 6 that were baptized! Two of the girls we have known forever. Our families have been friends for a long time. One is going into 8th grade and the other is in high school. I'm so sad that I wasn't able to be there because I was sick.
Then that Wednesday night after church, 2 more of our friends were baptized! They are our neighbors too which is great! They are siblings and one will be in 7th grade, and the other is in high school. It was so special!
At the high school camp, there were around 10 that were baptized I think!
Then on July 10th, my brother was baptized along with 3 others that day!
In the past month, there have been 34 teenagers who have given their lives to Christ in baptism! Six of them were not members of our church, meaning their parents don't go to church here. They are already sharing what God has done with their families who do not know Christ.
There have also been many adults baptized recently too!
I love seeing people decide to give their lives to Christ in baptism. I was baptized on August 21, 2005. My best friend was also baptized then. Her dad baptized her, and my dad baptized me. It was the day before school started!
Baptism is such a special, life-changing thing. It's when we confess Christ in front of people, and then put on Christ in baptism. It's an outward expression of an inward change.
'Then he (Jesus) said to them all: “If anyone would come after me, he must deny himself and take up his cross daily and follow me.' Luke 9:23
'Peter replied, “Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit.' Acts 2:38
Through baptism, we are crucified with Christ (going down under the water), then are resurrected (coming out of the water). We die to our old selves, and start a new life with Christ. We are born again into a new life!
"Or don’t you know that all of us who were baptized into Christ Jesus were baptized into his death? 4 We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.
The angels in Heaven rejoice even if only 1 person is baptized. I can't imagine what rejoicing they have been doing with all of these baptisms! I don't think it's possible to watch a baptism without smiling. It can turn anything into a great day!
Praise God that He forgives us of our sins and makes us white as snow in baptism. Our names are written in the book of life and we have the hope of spending eternity in Heaven where there will be no more pain, death, suffering, or tears.
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4
Then that Wednesday night after church, 2 more of our friends were baptized! They are our neighbors too which is great! They are siblings and one will be in 7th grade, and the other is in high school. It was so special!
At the high school camp, there were around 10 that were baptized I think!
Then on July 10th, my brother was baptized along with 3 others that day!
In the past month, there have been 34 teenagers who have given their lives to Christ in baptism! Six of them were not members of our church, meaning their parents don't go to church here. They are already sharing what God has done with their families who do not know Christ.
There have also been many adults baptized recently too!
I love seeing people decide to give their lives to Christ in baptism. I was baptized on August 21, 2005. My best friend was also baptized then. Her dad baptized her, and my dad baptized me. It was the day before school started!
Baptism is such a special, life-changing thing. It's when we confess Christ in front of people, and then put on Christ in baptism. It's an outward expression of an inward change.
'Then he (Jesus) said to them all: “If anyone would come after me, he must deny himself and take up his cross daily and follow me.' Luke 9:23
'Peter replied, “Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit.' Acts 2:38
Through baptism, we are crucified with Christ (going down under the water), then are resurrected (coming out of the water). We die to our old selves, and start a new life with Christ. We are born again into a new life!
"Or don’t you know that all of us who were baptized into Christ Jesus were baptized into his death? 4 We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.
5 If we have been united with him like this in his death, we will certainly also be united with him in his resurrection." Romans 6:3-5
"Jesus answered, “I tell you the truth, no one can enter the kingdom of God unless he is born of water and the Spirit. 6 Flesh gives birth to flesh, but the Spirit[b] gives birth to spirit" John 3:5-6
'You are all sons of God through faith in Christ Jesus, 27 for all of you who were baptized into Christ have clothed yourselves with Christ.' Galatians 3:26-27
The angels in Heaven rejoice even if only 1 person is baptized. I can't imagine what rejoicing they have been doing with all of these baptisms! I don't think it's possible to watch a baptism without smiling. It can turn anything into a great day!
Praise God that He forgives us of our sins and makes us white as snow in baptism. Our names are written in the book of life and we have the hope of spending eternity in Heaven where there will be no more pain, death, suffering, or tears.
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4
Here are pictures of Landon's baptism!!
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| Landon's confession |
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| My grandpa leading a prayer before the baptism |
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| Aww brother-sister hug |
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| New brother in Christ! |
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| My grandpa with Landon |
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| Alyx, Andrew, Landon, and I |
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| Look at my face in this one! It's crazy |
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| Grandparents |
Thursday, July 21, 2011
Medicine changes and massage therapy
I went to the doctor last Thursday to see if my headaches are from a medicine I'm on to control the cysts. The doctor said that is very possible, but we aren't sure. I went from 10 micrograms to 35 while I was in Nevada and couldn't get the cysts under control. She said for most people 20 is high and I was on 35. So we took the medicine down to 30 because we aren't comfortable going lower because of the cysts coming back. It will take 3-4 weeks to know if it was the medicine causing the headaches.
As we were talking, we were reminded about how much my body went through leading up to the stay in ICU. For at least 5 days, my body was all tensed and I had dystonia.
The Dystonia Medical Research Foundation says "Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures."
I went to the ER for 3 days in a row because it kept coming back. Then I started having the seizures and they couldn't get them stopped for 6 hours in the ER and ICU. They got them mostly under control in the ICU but there were still little breakthrough ones. So for almost a week, my body was tensed up really badly. My jaw was clenched too.
Since then, we have done nothing to help relax any of the muscles. This could also be contributing to the headaches that won't go away. All my muscles are so tight and knotted that I'm surprised that we haven't thought of this earlier! When muscles go through that much trauma and pain, they aren't just going to fix themselves.
Tuesday I went for a massage and they worked on my neck, jaw, back, and head. Oh my. It hurt so bad! Whoever said massages are relaxing are wrong! They said that it's going to take 4-5 months to fix everything. The scoliosis doesn't help the problem. We are having to completely retrain my muscles so they know that it's not okay to tense up. That's why it will take 4-5 months is because we have to reprogram them. When we told them what kind of reaction I had that landed me in the ER and ICU, the massage therapist knew exactly what we need to do. He explained about retraining the muscles.
So, it could be a combination of medicine and muscle problems causing the headaches. It's going to take a while to know. Hopefully they will start to get better as we release the tension and lower the dose of medicine.
As we were talking, we were reminded about how much my body went through leading up to the stay in ICU. For at least 5 days, my body was all tensed and I had dystonia.
The Dystonia Medical Research Foundation says "Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures."
I went to the ER for 3 days in a row because it kept coming back. Then I started having the seizures and they couldn't get them stopped for 6 hours in the ER and ICU. They got them mostly under control in the ICU but there were still little breakthrough ones. So for almost a week, my body was tensed up really badly. My jaw was clenched too.
Since then, we have done nothing to help relax any of the muscles. This could also be contributing to the headaches that won't go away. All my muscles are so tight and knotted that I'm surprised that we haven't thought of this earlier! When muscles go through that much trauma and pain, they aren't just going to fix themselves.
Tuesday I went for a massage and they worked on my neck, jaw, back, and head. Oh my. It hurt so bad! Whoever said massages are relaxing are wrong! They said that it's going to take 4-5 months to fix everything. The scoliosis doesn't help the problem. We are having to completely retrain my muscles so they know that it's not okay to tense up. That's why it will take 4-5 months is because we have to reprogram them. When we told them what kind of reaction I had that landed me in the ER and ICU, the massage therapist knew exactly what we need to do. He explained about retraining the muscles.
So, it could be a combination of medicine and muscle problems causing the headaches. It's going to take a while to know. Hopefully they will start to get better as we release the tension and lower the dose of medicine.
Tuesday, July 19, 2011
MISSIONS SUNDAY video
Here's the video of the kids singing the song that I was talking about in my previous post. You can't see it, but kids and teens lined every row on every isle! It was awesome!!
Missons Sunday 2011
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| The stage at church on Sunday. Someone else took this picture! |
The worship time started out with a time of celebration and learning about how God has used previous funds to help others. The lesson was about "generation to generation" and how changing a child's life by teaching them about God can eventually change a whole community. We saw videos and pictures of little kids that have been taught the gospel and have told their families and brought them to Christ. Then those families have been an example to their community.
Through out the worship time we saw videos of other ways that God has helped us spread the gospel. There are people in Africa being given corn to grow, so that they can have physical food for them and their community, but they will also be able to share Christ with others as they sell the corn. There are people in the Philippines who are given a goat that provides them with milk and so much. It not only helps their physical needs, but their spiritual needs are met too.
There are so many stories that I could share!
We took the Lord's Supper together and it is amazing to think that we share that with people around the world. No matter what language, race, or culture, we all participate in the same thing every week, remembering what Jesus did for us.
After that, the kids were dismissed to get ready for a special thing we were doing. Grades kinder garden through high school had been practicing a special song. We were given African shirts to wear since the song we sang came from there!
Here is the video they showed as we were getting ready to sing. These are churches around the world that we support.
All the kids lined each isle and there were some on stage. The older kids were paired with a younger kid to make sure they got to the right spot. We sang a song in Swahili I think! Then the church sang a song with us called A New Hallelujah.
Then we took up the special offering and all the kids in the isles helped pass the baskets. The elders then prayed over the offering. Our goal this year was $655,000.
After church there was a free lunch for everyone! We came back for the evening worship where my dad got to announce what we had raised! At the time of evening worship we had raised $649,000 and then by yesterday we had gone over our goal! Praise God!! We had a great time of praise and heard a great lesson from Bart! (who lives in Vienna)
After evening worship there was dessert before dinner and there was ice cream, coke floats, iced coffee and lots of treats! It was a great day!
I am going to also post a video of the kids singing!
Friday, July 15, 2011
Graduation Reception
The graduation reception was perfect! It was from 2-4 on Sunday and was in the bridal room at church. They just re-did the room, so it has wood floors and is beautiful! There were homemade cookies, cupcakes, and punch. There were so many people that came. I'm so blessed with so much support.
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| The hosts and I! |
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| One of my youth ministers and I |
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| Tacy and I |
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| Me, Tacy, and Miriam |
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Wednesday, July 13, 2011
What a weekend! (in a good way)
It was an amazing weekend. On Saturday night, we had some friends over for dinner. They live in Vienna, Austria right now, but we have known them for a long time. Landon and I were in their wedding 10 years ago, and now they have 2 kids with one on the way.
It was so great to see them again! Their baby girl is due in September and they said they hadn't told anyone their name but that they wanted to tell us. They are naming her after me! Her name will be Victoria Hope! How beautiful is that?! I'm so excited.
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| Me, Landon and Izabela who is 8 |
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| Me, my mom, Tamika, and Izabela |
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| Bart, Krystian, Landon and my dad |
We had a great time with them Saturday night!
Sunday was a great, great day!!
Sunday morning Landon was baptized! He had been thinking about it for a while. Poor Landon woke up Sunday morning and his eye was so swollen and red. He went to the doctor Monday and found out that he has an eye infection. Of all the days it could have happened, it happened on the day he was getting baptized.
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| Landon and I right before he was baptized |
We had someone else take pictures of his confession and actual baptism, so when we get those I will post more! There were 3 baptisms Sunday morning and 1 Sunday night, so it was a great day! (I'm working on another post about baptism and this summer)
We went out to eat with my family at the restaurant that he picked after church. Then we headed back to church for my graduation reception. I'll post pictures and more soon.
I'm going to the doctor tomorrow because I've been having really bad headaches that aren't going away. They're getting worse and not even strong pain medicine is getting rid of them. That's why I haven't posted as much. The headaches take a lot out of me. So hopefully we'll get it figured out at the doctor tomorrow!
Saturday, July 9, 2011
Quick information about what a wonderful day tomorrow will be!
Camp was amazing! I will post more about it tomorrow or Monday. BUT I wanted to post about tomorrow. My brother Landon who is 13 has decided to be baptized tomorrow!!!!!! So tomorrow morning at church he will put on Christ in baptism! Usually our church has 2 services on Sunday mornings, but for the month of July we are just doing one service on Sunday mornings. We're getting ready for Missions Sunday which is next week. I'll explain more about that later. So all that to say, with just one service, the auditorium is packed full and it's such an uplifting time of worship and praise. I'm so excited!!!
Tomorrow afternoon, someone is hosting a graduation reception for me at church! Everyone is invited to come so email me (victoriashari@hotmail.com) if you want more details!! It will be a big day for our family tomorrow. Landon is making the best decision of his life, and we didn't know if I would ever get a graduation celebration since we didn't know if I would be able to graduate and finish high school from home!
There will be lots of rejoicing and celebrating tomorrow!
Tomorrow afternoon, someone is hosting a graduation reception for me at church! Everyone is invited to come so email me (victoriashari@hotmail.com) if you want more details!! It will be a big day for our family tomorrow. Landon is making the best decision of his life, and we didn't know if I would ever get a graduation celebration since we didn't know if I would be able to graduate and finish high school from home!
There will be lots of rejoicing and celebrating tomorrow!
Tuesday, July 5, 2011
Cry Out to Jesus
I heard this song on the radio on the way to church Sunday and wanted to share.
"To everyone who's lost someone they love
Long before it was their time
You feel like the days you had were not enough
when you said goodbye
And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right
Chorus
There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus
For the marriage that's struggling just to hang on
They lost all of their faith and love
They've done all they can to make it right again
Still it's not enough
For the ones who can't break the addictions and chains
You try to give up but you come back again
Just remember that you're not alone in your shame
And your suffering
Chorus
When your lonely (when you're lonely)
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus
To the widow who suffers from being alone
Wiping the tears from her eyes
For the children around the world without a home
Say a prayer tonight"
For me, I think the part that I can relate to the most right now is,
"And to all of the people with burdens and pains
Keeping you back from your life".
"To everyone who's lost someone they love
Long before it was their time
You feel like the days you had were not enough
when you said goodbye
And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right
Chorus
There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus
For the marriage that's struggling just to hang on
They lost all of their faith and love
They've done all they can to make it right again
Still it's not enough
For the ones who can't break the addictions and chains
You try to give up but you come back again
Just remember that you're not alone in your shame
And your suffering
Chorus
When your lonely (when you're lonely)
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus
To the widow who suffers from being alone
Wiping the tears from her eyes
For the children around the world without a home
Say a prayer tonight"
For me, I think the part that I can relate to the most right now is,
"And to all of the people with burdens and pains
Keeping you back from your life".
I don't think there has been a day in the last 4 years where I haven't thought for a second about what I could be doing if I wasn't sick. I've learned how to handle those thoughts and that God has me where He needs me, but everything around me reminds me what I could be doing if I wasn't sick.
For example, I could have been a normal teenager going to school, but I've learned more important things from being sick.
Things like tv and friends make you feel like you're missing out on everything since my life for so long has been doing treatments, being in the hospital, and being too sick to do anything. So yes, sometimes it feels like I'm being kept from living life.
But I'm not. No, I haven't been to school in almost 3 years, I've never been to prom, I was in the hospital for my high school graduation, and I've spent most of my time at home or getting treatments at the hospital or across the country at my Lyme doctor. But I'm able to live. Really live. Each day is a blessing. Walking, eating, and breathing by ourselves is not a given.
"There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus"
"I took my troubles to the Lord;
I cried out to him, and he answered my prayer" Psalm 120:1
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20-21
I hope you had fun celebrating the 4th of July yesterday! I leave for camp tomorrow and will get back Friday afternoon! Today I'm resting and getting things ready to go. Please pray that camp goes well and that I will feel good. I'm still having daily headaches and some joint/body pain. Yesterday a storm came through and my joints all ached, especially my hands and knees. It's weird how that affects our joints!
I'm driving myself to camp (2 and a half hours) and I'm so excited!!
"There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus"
"I took my troubles to the Lord;
I cried out to him, and he answered my prayer" Psalm 120:1
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20-21
I hope you had fun celebrating the 4th of July yesterday! I leave for camp tomorrow and will get back Friday afternoon! Today I'm resting and getting things ready to go. Please pray that camp goes well and that I will feel good. I'm still having daily headaches and some joint/body pain. Yesterday a storm came through and my joints all ached, especially my hands and knees. It's weird how that affects our joints!
I'm driving myself to camp (2 and a half hours) and I'm so excited!!
Saturday, July 2, 2011
Church Camp
I'm finally starting to feel better! I'm done with my antibiotics, but they stay in my body for another 7 days I think so it will continue to work. Church camp for the high schoolers starts tomorrow. I am going to go Wednesday, Thursday, and Friday. I don't think I could last the whole week. I'm glad that I decided to go just for a few days so I can continue to rest and get over the sinus infection. The last days at camp are always the best anyway! Camp is 2 and a half hours away, so I'll probably get there early Wednesday afternoon. I'm so excited!!