My Birthday! It Is Well With My Soul

Today is my 18th birthday!

The first thing I think of when I think of being 18 is being able to sign my own medical papers. I can sign myself in and out of the hospital! Except not really because usually I get medicine that makes me really loopy, so I'm not allowed to sign myself out. It's not that I want to sign the papers, it's just knowing I could. Plus if I sign out I have to pay and that's what parents are for right? :)

I've done a lot in my 18 years! I've been to Europe 3 times, and South America 3 times, all for mission trips. I've traveled across the US multiple times. In 5th grade I received the "Student of Today" award out of all of 5th grade. I did community musicals through out elementary school and middle school, as well as school musicals. When I was in school I got straight A's. But that's not what my life is all about.

In 8th grade I got mono. Through out 9th grade I went from doctor to doctor, seeking answers as to why I was still sick. In 10th grade, I was too sick to go to school, and I went across the country to Nevada and finally got a diagnosis. A few days before my 16th birthday I had my first trip to the ER where I was hooked up to morphine and fluids. A couple months later, I got a PICC line (permanent IV line) placed in my right arm so I could do IVs at home. 7 months later, I had my first surgery to have a port placed in my chest that you access with a 1 inch needle. It goes directly to my heart and is for IVs. I still have the port. Around my 17th birthday, I started having major heart problems from the Lyme. I spent several scary days through out last spring in the hospital with my heart skipping beats and my heart rate over 140 bpm all the time. Within 3 months last year, I had 2 surgeries and had 2 organs removed. My gallbladder wasn't working so that surgery was in late August. The surgeon also cut off adhesions from my liver. A couple months ago in the first week of December, I was hospitalized and then had exploratory surgery. I had appendicitis, internal bleeding, endometriosis, and a cyst the size of an orange. All of this is because of Lyme. I've spent 11 weeks across the country seeing my doctor because no one in my state will treat me. I've been to the ER over 30 times in 2 years. I've been on IVs more days than not, and taken more medicine than anyone I know. Instead of school, friends, driving, sleepovers, and normal teenage things, I'm dealing with hospitals, IVs, pain medicine, doctors, Make a Wish, staying home, low immune system, medicine, more medicine, and conversations that I shouldn't have to understand. But that's not what my life is all about.

"I am a child of God and there is nothing I can do to keep God from loving me. I exist for a purpose, to glorify God in EVERYTHING I do. In the way I talk, in the way I relate, in the way I act, in the way I love. This life will be hard but THAT'S OKAY because I have Jesus to lead me, the word of God to guide me, the church to support me, and one day, Jesus is coming back to take me home so I can BE WITH HIM FOREVER" That's what my life is about. That's what matters.

What has happened the past few years was definitely not in my plans. No one plans to be too sick to go to school and spend years doing treatments, fighting for life. I honestly never thought that I would qualify to have a wish from "Make a Wish".

But God has bigger plans for me.

'For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.' Jeremiah 29:11-14

"I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well." Psalm 139:14

"All the days ordained for me
were written in your book
before one of them came to be." Psalm 139:16

"For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago" Ephesians 2:10

"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." Romans 8:28

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

I could not think of a better way to spend the first few hours of my 18th year of life than to spend it with my church family in prayer at the 24 hours of prayer. After all, that is what my life is about. Growing closer to God and worshiping Him, and shining His light.

A lot of days I still don't understand this road that I'm called to walk. A lot of days I don't like it. But, if God calls me to this which He has, I believe He will get me through it and I'll be stronger than before.

Like the hymm says, it is well with my soul, no matter what.

"When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul."


So today I might not feel good at all. I might cry from the physical pain despite the pain medicine, like I have everyday for several weeks. But I will rejoice because I am blessed, God is still God, and He has a plan for me. A plan bigger than I can imagine.


Thank you for supporting me! I'm so blessed to know you.


"This is the day the LORD has made; let us rejoice and be glad in it." Psalm 118:24

We need more answers.

My appointment yesterday was good. The doctor started to think the pain could be from muscular skeleton problems, so he had another doctor come in. They ended up ruling that out. My Lyme doctor is wondering if part of the problem could be that there is an infection in my abdomen. We brought that up at my appointment yesterday, and he said it's worth a try. I had extensive blood work done, to see if there is an infection, but I'm starting on antibiotics anyway. The other theory is that it is scar tissue and adhesions binding organs together. That is our last resort because that would mean surgery again. We're trying everything we can before we go there. The doctor also wants us to get a second opinion. He wants me to see my primary care doctor to see what he thinks about the pain.

Late last night, I got a terrible headache and had fever. I'm feeling a little better today, but just feel so tired.

I'm praying that I feel okay on Friday because there is a youth lock-in at church. From 7pm Friday night until 7pm Saturday night, our church is having 24 hours of prayer. There is a room at church set up with things to pray for. The youth takes the prayer slots in the middle of the night during the lock-in. Each teen is scheduled to go to the prayer room at a specific time for 20 minutes. But anyone is allowed in there at any time. It's neat to see the adults who wake up in the middle of the night and come to church to pray, or the teens who give up playing games because they want to go pray. There is a board in the room with everyone's name who goes to church there. Once you pray for them, you check off their name so that everyone gets prayed for at least once.

At the lock-in, we play games, have special worship times, and drink a lot of caffeine to stay awake.

I'm really excited since I will be at church at midnight when it's my birthday! Until then, I'm going to rest so that I can go to the lock-in Friday night, and celebrate my birthday on Saturday. I just wish that we would have gotten more answers yesterday.

Weekend update and thoughts

On Friday I got to go to senior lunch! One of the youth ministers picked me up so that I could go. It was really great to see my friends and have normal, teenage conversations. Later that afternoon, my grandma and I went to Old Navy and got me some more sweats to take to Nevada whenever I go. We found great clothes, and I had a coupon that saved us 30 dollars! 

I was really worn out by then, but decided to go ahead and go somewhere else that night. My friend picked me up, and we went to Follies. Follies is the big talent show at my school. A lot of my friends were in it, so I'm glad I got to go. But, I really hate going to things at school now that I don't go there anymore. Growing up, I had always planned to be in all the musicals and shows in high school. I knew that was what I wanted to do. In middle school I was the lead in the musical "Oklahoma". I did community theater too. When I got sick, everything I wanted to do in high school fell apart. It's so hard going to watch the things that I've dreamed about being in with my friends. In the talent show every year there is a senior girls act. They dance and sing to a song. Lots of my friends were in that. I should have been in that. But I was in the audience, a stranger at my own school. I saw people who were in my classes the year I got sick. I got sick in the middle of the year, so I just disappeared from class. Answering all the questions as to what happened and why I'm not in school is hard. They are not easy conversations to have.

I don't remember the last time I drove...Because of the pain medicine I have to be on, I'm not allowed to drive. I so miss the freedom, but it hasn't been a big deal since I haven't felt like going very many places. But that's why I had to have people pick me up Friday for everything.

I started feeling sick during the show, but I managed to sit through it, and we left right after it was over. Yesterday I was so worn out and hurting. I couldn't do anything except lay on the couch. Today, I once again was not able to go to church. I don't feel good, so I've just been resting. 

Tomorrow night we talk to my Lyme doctor again. I wish we could wait to talk to him until after my appointment Tuesday with the gynecologist, but I'm sure he'll want to talk again soon. I'm praying we will actually have a plan of action on Tuesday and not just "wait and see" some more, because I am so tired of that. If we don't start doing something about this I'm likely to lose it. 

My 18th birthday is this coming Saturday!

This verse tells us to present our requests to God with thanksgiving. 

"Do not be anxious about anything, but in every situation, by prayer and petition, with  thanksgiving, present your requests to God." Philippians 4:6

Today, I'm thankful for

• Medicine that allows me to be more comfortable
• Times with friends 
• the 12 hours of sleep that I got last night
• My birthday on Saturday! Can I make this a birthday week instead of just a day?
• The beautiful weather we've had the past few days
• Peach Iced Tea
• My family

I will update in the next couple days with anything that I find out. 

Maybe another surgery...

I hope all of this makes sense, I'm posting from my phone.

We talked to my Lyme doctor Monday night. The main thing is that he said that I'm not even stable enough to make the trip to Nevada to get treatments. I've had to go to the ER so much and there's so many problems that he doesn't even think I can make the trip out there yet. We need to get the pain and cysts under control. He wants to know what my gynecologist said at my appointment yesterday, so we talk to my lyme doctor again in a week.

My appointment yesterday was very long, and heavy. We were there for over 2 hours, discussing options. We first saw a PA that we've seen before. Once we talked, she went to get the main doctor (who did my surgery). We talked about doing the Lupron injections. At first we decided that we were doing them, then we all decided to not do that. The said effects are terrible and it takes up to 3 months to work. It puts you in menopause to stop the cysts and endometriosis. That's just not normal for a teenager, so it would be hard on my body. Ever since I got sick, I've been the 1% who has all side effects possible of every medicine. That's just how I am now. The doctor was very good about listening to our concerns, and agreed that doing the injections would be risky for me. They would cause sleep problems, hot flashes, mood issues, depression, and other things. It sounds like it would make me feel how I do when I'm on steroids, which I can't tolerate anymore. There are medicines to try and treat the symptoms, but that's just more medicine.

As we discussed more in detail everything that's happened since surgery, the doctor got more frustrated. He could tell how frustrated we are as I cried while we were talking, and he's upset that he doesn't know what to do. I'm not a usual case, and he's stumped as to why I'm in so much pain all the time. He made sure and said he's not frustrated at me, just at what's happening.

He now thinks that I have scar tissue/adhesions and that is what is causing most or all of the pain. It can attach to organs or anything and move them or make them get stuck somewhere that they're not supposed to be. This can happen because of surgeries, along with other things. It can twist  and bind the bowels and cause tons of problems, which is what he is thinking is happening with me. It can cause complete bowel obstructions. It doesn't only happen to the intestines, it  can happen to anything. The ultrasound lady at my most recent ER trip, actually saw my intestines all twisted on my right side. Some people just have that, so she said it was not a big deal. But now that he brought that up, I remember her commenting on that. So what does this mean as far as a plan of action? I'm starting this medicine to try for a week. It's actually an anti-depressant, so I'm not quite sure what it's supposed to accomplish. I think it might help with pain. Next week I return to the gynecologist. If he still suspects scar tissue, surgery will be our only option. The only way to know if it's scar tissue for sure is surgery. Because cysts come and go, and my pain is in the same exact spot and consistent, he really suspects scar tissue. My pain is only on the right, but I've had cysts on the left and they have not caused pain. It completely makes sense, as I have almost every symptom of scar tissues and adhesions. Scar tissue has a very high rate after the removal of the gallbladder, appendix, gynecology surgery, endometriosis, and pelvis surgery. I have had every single one of those. I had two big abdominal/pelvis surgeries in three months. My appointment next week couldn't come fast enough. I'm so ready to get this taken care of. If we are going to have to do surgery, I want to do it as soon as possible. I think it would be best(not a great choice at all, but none of our options are good) if it is scar tissue, because that means that the cysts are mostly under control and we won't have to do the Lupron at this time. I would just have to recover from the surgery, and continue on the birth control. Do I want another surgery? No way. But surgery is sounding better than at least 6 months on the Lupron with the side effects. There are ways to take care of scar tissue without surgery. But if it has binded the intestines and who knows what else, you have to get in there and take care of it. So until my appointment, we're just trying to manage the pain, praying for direction. We're trying to avoid another surgery, but that might be the next step. I would appreciate your prayers for this, that the doctor has more clarity about what to do. Thank you very much.

I will post an update tomorrow. I had an appointment with the gynecologist today and it was very long and tiring. So I'll update tomorrow.

If You say go

A couple months ago, on this blog, she posted a verse and song that I love. It's kept me thinking ever since I read it.

Daniel 3 talks about Shadrach, Meshach, and Abednego and King Nebuchadnezzar. The king is about to throw Shadrach, Meshach, and Abendego into a blazing furnace if they don't bow down to him. Everyone else is bowing down to him, but they won't because he is not God.

'Then the herald loudly proclaimed, “Nations and peoples of every language, this is what you are commanded to do: ⁵ As soon as you hear the sound of the horn, flute, zither, lyre, harp, pipe and all kinds of music, you must fall down and worship the image of gold that King Nebuchadnezzar has set up. ⁶ Whoever does not fall down and worship will immediately be thrown into a blazing furnace.”'

The horn sounds, and they do not bow down. They are then taken before the king. This is their response.

'Shadrach, Meshach and Abednego replied to him, “King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. ¹⁷ If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. ¹⁸ But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”'

How incredible! Even if God did not do what they asked, they would still praise Him and stay faithful to Him.

These are the lyrics to If You Say Go by Vineyard. They are so simple, and go along with the verses in Daniel 3.

"If You say go, we will go
If You say wait, we will wait
If You say step out on the water
And they say it can't be done
We'll fix our eyes on You and we will come

Your ways are higher than our ways
And the plans that You have laid
Are good and true
If You call us to the fire
You will not withdraw Your hand
We'll gaze into the flames and look for You"

And here are the lyrics to If You Want Me To by Ginny Owens.



"The pathway is broken
And the signs are unclear
And I dont know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley
If You want me to
CHORUS:
Now I'm not who I was
When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to


It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone


So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to"


Tonight we are talking to my Lyme doctor in Nevada. We'll update him, and talk about when to go there and everything. 

Hospital trip and Update...

TMI warning. Don't say you weren't warned.I woke up Wednesday feeling worse than normal. The abdominal and back pain was bad, along with just feeling sick. Sometime early afternoon, I got dizzy and my breathing became difficult. It was very heavy and loud and quick. I had fever and was shaking and trembling. I fell asleep on the couch and I don't remember much after that until we got to the hospital. My parents kept waking me up while we were at home, asking questions and things. Getting to the hospital was tricky since the state was shut down because of a snow storm. Both my parents went with me and my brother stayed at his friends house.

We got to the hospital around 4:30 I think and it wasn't too crowded. We checked in and sat in the waiting room for a while. In triage they took blood and started an IV like normal. My parents kept getting warm blankets for me because I was still shaking and freezing.

Finally, they came to get me and took me up to ultrasound. Next I went to CT. Then it was back to ultrasound because they couldn't see what they needed to see the first time. Lucky for me, I got to have a catheter placed, then have my bladder pumped full of fluid and so on. They were looking for cysts or ruptured cysts which you can only see if your bladder is full. When you're in the ER, they won't let you have food or drinks in case you need surgery. I was dehydrated away and they wouldn't let me drink anything, hence the need for the catheter. That was a very fun experience. Before Wednesday, I thought you had to be asleep, or on good drugs, for them to place a catheter. Much to my surprise, there I was, AWAKE, with NO drugs of any kind. Apparently, most people are awake when they get them. The only time I've had a catheter was during surgery, where I was ASLEEP. The ultrasound lady can't place catheters, so an ER nurse came up. It was one of our favorite nurses, which was comforting. The ER nurse left and they got the ultrasound pictures they needed. Once we finished everything at ultrasound, they finally took me to my room in the ER.

I was taken to room 12, which was my normal room. That room is great because it's right by the nurses station, making it entertaining for us. That's the whole reason you go to the ER, for entertainment right?
 
Five minutes after we got to my room, xray came to get me. Thankfully the xray room was in the ER, so we didn't have to go far. I had a chest xray and was taken back to my room.

 All those tests had taken a really long time, and caused us to be taken all around the hospital, so it was nice to be in one place finally. My nurse came in (same one that had to come up to ultrasound) and got some IV fluids started and got me some nausea and pain meds. By this time, my breathing was really bad again and I was trembling and lightheaded. Thankfully my oxygen stats were perfect, but that was very confusing and concerning to the doctor. He left to go check on the test results of everything. We definitely had some entertainment last night! There was a lady in the room across from me that started yelling, "where's my doctor, where's my doctor, I'm freezing"! It was really funny the way she said it. She kept saying that over and over until someone came.
 The nurse accessed my port, because it needed to be flushed. So I had two IV lines now, a line directly to my heart, through my port, and a regular IV in the crease of my arm.
The doctor came back in and went over the test results. The CT scan showed a cyst on my right side. The ultrasound showed a little fluid on my right side. So the doctor isn't exactly sure what it is.
 He looked at my blood work and found some concerning things. He immediately ordered blood gasses. For blood gasses, they take blood from your arteries to test the oxygen, carbon dioxide, and other levels in your blood.
A respiratory therapist had to come draw the blood. She got to my room fast! She drew the blood out of an artery in my wrist, and out of my port.

 While we waited for the results, a man came in and did a flu test on me because they thought I had the flu. Thankfully it was negative, but the doctor said that that doesn't mean anything. I think it's odd how they say you could still have the flu even if your test is negative, and yet they say you can't have Lyme if your test is negative. Uhh that doesn't make sense. But I don't have the flu!

Buy this time, I had 5 blankets on me because I was shaking and couldn't get warm. I also got to have some ice chips since I wouldn't be needing surgery! My mouth and lips were so dry, probably from the pain medicine, heavy breathing, and since I hadn't really had anything to drink since early that morning. We didn't have any chapstick since we just ran out of the house, so the nurse found me some awesome hospital chapstick that you can put on your lips and in your mouth. How strange.

The doctor came in to explain that I have high lactic acid. My body couldn't get rid of it, causing the rapid and hard breathing. It also makes me feel like I can't breathe, even though I'm getting enough oxygen. If my levels would have been a little higher, he would have admitted me just for that. It's not good to have. It also has something to do with carbs. I don't completely understand it. He ordered another bag of IV fluids, this time with extra things in it. I think it had calories, along with several other things. I have to eat a lot of carbs to help with the levels too.Once the doctor left, I just broke down. I didn't know why I was crying. It was probably from all of the strong pain medicine, but it was so weird. Crying made my breathing worse, and made me hurt more. The nurse gave me something to help me sleep and calm down.

 We finally got to go home a little after midnight.

 In the 8 hours that I was there I had:

• regular blood and urine tests
•  a CT scan
• 2 ultrasounds
• a catheter
• a chest xray 
• 2 IV lines
• blood gasses taken from 2 arteries
• and a flu test

Because of everything that's been happening, we are going to go to my doctor in Nevada in the next few weeks. We talk to him on Monday. There is just so much going wrong. 

I'm feeling better than I was Wednesday. Yesterday I slept some and have just been laying on the couch. My parents are trying to get as many carbs in me as possible, which is difficult since I haven't been hungry. I'm eating more than I was earlier this week though. For now, I'm just going to rest.

"My soul finds rest in God alone;
   my salvation comes from him.
He alone is my rock and my salvation;
   he is my fortress, I will never be shaken" Psalm 62:1-2

I will update tonight or tomorrow. I went to the ER at 4 yesterday afternoon and got home a little after midnight this morning.

Notebook and Ideas

Some people collect baseball cards, I collect hospital bracelets...that's the cool thing to do now, in case you didn't know! Just kidding, that's just what you do if you're sick.

I've been trying to figure out what to do with all my hospital bracelets since I've kept most of them. I have kept over 30 of them. I finally decided to put them in a notebook! There's one bracelet per page, unless I had more than one kind of bracelet for that stay. They are in chronological order too!

Here is the notebook. Isn't it cute?

I have all the bracelets glued in, and now I'm going to put a verse, quote, or lyrics on each page. Here is an example of one of the pages.

This next page is from my latest surgery. I had 3 bracelets (identification, allergy, and what procedure I was having) from it. I decided to put pictures on there too.

This is where you come in. I would love for you to suggest your favorite verses, quotes, or lyrics for me to put in the book. I have a lot of room, so suggest as many as you would like!! Thank you!

Timeline of my story

I wanted to make a timeline so that it would be another visual of my story, since reading my story takes a while. This just has the major, basic things. I will add it to the top of my blog under the category "My Story".

Click on it to make it larger so you can read it!

Blizzard-Day 2 and Landon's birthday!

We are still snowed in! School is cancelled again for tomorrow. We tried to get out of our driveway today just to see if we could, and we couldn't even with my dad and brother shoveling it. It was a whole 4 degrees today! Better than yesterday!

Last night's sunset

These pictures are from today. I made my dad go take these for me :)

Here is our house with Landon and his friend shoveling. Our driveway is weird and is steep going down. One of the snow drifts on our driveway was level with the street, so it was 3 or 4 feet.

Another view of our house. This blizzard wasn't as pretty as last years, because of all the wind and it was a dry snow.

It was a pretty sunny day!

Today is Landon's 13th birthday! I told him he should take a day off from school since it is his birthday..haha

Happy day of your birth Landon!!!! I love you!

Landon in Florida last Christmas

Landon and I in Rio de Janeiro, Brazil this past summer.

Since we can't go out to eat for his birthday, we're having a wonderful home made dinner and chocolate cake! Landon has been in and out of the house all day sledding, so he's had fun!!

Today I finally decided to add labels to all my posts. So I went through all of them. I put a label cloud on the side of my blog, so hopefully it will be easier for people to find posts! I also re-arranged things, so take a look at that!

I hope you have had a wonderful day!

Blizzard 2011

Well, the blizzard is actually happening. Schools and businesses started closing last night, before there was even a snow flake falling from the sky. We are in a state of emergency, with the national guard here to rescue people. No one went to work, and everyone is stuck inside enjoying a day off. Most schools and businesses have closed for tomorrow too. There's about a foot of snow on the ground, along with ice. Snow drifts are up to 6 feet, and some businesses roofs have collapsed. The news stations are in heaven! They get to report all day and night. When I woke up, before I looked outside, it was so bright that I thought maybe the snow didn't come. When I looked outside, I knew that was not the case. We're having complete whiteouts, and sometimes can't see down the street because of the blowing snow. For all you who live up north or where you have snow a lot, you're probably laughing at us. But for us, this literally shuts the state down for days. I love it!

The temperatures are in the negatives, with wind gusts of 50mph.

We have beautiful Cardinals in our backyard, along with other birds, that are so pretty against the white snow.

We measured how deep it is right here, and it is about 2 feet. It's getting deeper too!

You can tell from this picture how it is blowing, but this picture doesn't show how much it's blowing.

A look down the street

The best quote from a news man today was, "I will probably get in trouble for this, but I'm sure that it would be colder if it wasn't for global warning". I'll remind you that the temperature is in the negatives with the wind chill. Coldest that we've had in 15 years. Hahaha!

We're going to make a few yummy soups this after to have for the next few days. I love when everyone is stuck at home! Especially when I couldn't have gone anywhere anyway cause I'm sick!

Stay warm, and I'll update later!