Birthday celebrations- Surprise party and more!

I had such a great weekend!! I went out to eat my parents and brother on Friday night! Then, I was going to go to the lock in, and they were going to Landon's basketball game. The lock in started at 10 pm, so my friends picked me up. We got there and had worship and a lesson on praying. After that, the games started. They had huge nerf gun wars, and it was intense! My friends and I just walked around and watched everyone (we didn't want to play and embarrass everyone since we're so good you know ;) ). It was getting close to midnight, which was my scheduled prayer time. Before I went into the prayer room, my friends and I counted down until midnight and they started screaming and yelling happy birthday! It was so much fun! So after that, I went into the prayer room. I assumed everyone would keep playing games for a few more hours. I was only scheduled to be in the prayer room for 20 minutes. Of course you can stay longer though.

Apparently, right when I went into the prayer room, my family got to church, everyone ran into the high school room, and threw balloons and streamers everywhere. One of the youth ministers and interns kept coming in the prayer room and looking around, which I thought was weird. I guess they had to make sure I didn't leave or something. I also noticed that it had gotten quiet in the halls outside of the prayer room. That was odd, but I didn't think anything of it. So as our prayer time was almost over, Megan (one of the youth ministers) told everyone they had to leave the prayer room and go to the high school room to explain a game. Ok that was weird! They have never gotten people out of the prayer room for a "game". I knew something was going on, but I had no idea what.

Megan pulled me aside and asked me all these questions, trying to stall. That wasn't weird cause she's very good at asking how I am :)

We started walking to the high school room, and it was dark in there and quiet. The youth group is never quiet. I opened the door and they turned on the lights and yelled surprise! They dumped balloons on me and everything!! Then they took me on stage to play "Victoria trivia". The winner got the 2nd piece of cake. Well the game was tricky because I had to give the correct answer. You think that would be easy, but it wasn't. For example, the first question was what is her favorite color? I don't have a favorite color and it was multiple choice (my mom made the questions and answers!) so I just picked a color. It was really funny that I couldn't even answer questions about myself!

After the game, everyone got cake and got back to playing games! My cake was a white, tall circle with real roses and flowers. It was gorgeous! It was chocolate and vanilla with strawberries and cream separating the layers. The whole cake was gone within minutes! I didn't have any because I was feeling sick, but thankfully my parents got one for Saturday at home. My family hung out for a while and then back home. It was probably 1:45 before they went home. Way past their bedtimes! Those rebels. I'm so glad they came!

This was the room after the surprise party. I'm told people video taped when I came in, so I need to get those!

I wanted to stay for a special worship and prayer time which was at 2 am. That ended around 3 am I think, and then my friends took me home. I got home and wasn't feeling good and immediately threw up. I went to sleep at 4, but didn't sleep well at all. I got out of bed at 10 am, and got sick again. I felt like I got beaten up. My whole body hurt down to my bones. That's what I get for getting home at 3 am! I took some medicine to be able to make it through the day.

My friends were coming over at 3:45 and we were going to go eat an early dinner, and then hang out at my house. I rested and got ready until they got to my house. We took pictures, and then went to eat! We had really cute waiters at dinner that sang to me. Dinner was so much fun!!

We then came back home to have cake and hang out. We spent our time wisely, playing Mad Libs and watching Youtube videos. I haven't laughed that much in so long! It was great!! Here are some pictures.

Me and Natalie

Kailey and I

Me and Hannah

The whole group!

Hannah, me, Natalie, Alex

This was my cake! Isn't it gorgeous?

It was a wonderful weekend! Thank you all so much for the sweet comments and birthday wishes. And thank you to everyone who helped with my surprise party! I have the best friends and family. I am so blessed.



Update

Well, I just wrote a whole post about the weekend with pictures and I lost it all. So I will have to re do that...

I've been on antibiotics for about a week for the possible abdominal infection. I didn't think that this antibiotic would kill the Lyme, but I was wrong. Sunday night I got so sick. I was sitting in the living room and was hit with the worst migraine you can imagine. My jaw hurt too, so talking hurt. I couldn't even move. I got fever and my body ached down to my bones. I was also nauseous. This lasted all night. When the Lyme bacteria is killed, it causes a herx reaction.

This is what Wikipedia says about a herx.

"The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment. It is classically associated with syphilis.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours. The intensity of the reaction reflects the intensity of inflammation present.
The reaction is also seen in other diseases caused by spirochetes, such as borreliosis (Lyme disease and tick-borne relapsing fever) and leptospirosis, and in Q fever. Similar reactions have also been reported to occur in bartonellosis (including cat scratch disease),brucellosis, typhoid fever, and trichinosis.^"


When I go to Nevada, I have this every day from the treatments. They don't use antibiotics, but you get the same reaction from natural medicines as you kill the bacteria. Yesterday I felt a little better until I took the antibiotic for the day. Everything hit hard again last night. I'm hurting a lot today.

My mom and I go to my Lyme doctor in Nevada next Tuesday, March 8th. I have a week before we leave. I will be gone for several weeks. My dad and brother are going to come to Nevada on my brothers spring break. We are going to take a few days off from the clinic, and go to Lake Tahoe which is about an hour away.

Does anyone watch House? We found a doctor who is kinda like house. He actually lives in my neighborhood. He has treated a few Lyme patients, but none that are as bad as me. He would like to work with my Lyme doctor to do whatever he can here. On Thursday, I'm going to do a hyperbaric chamber at his clinic. I'll post more about that once I have done it and I'll take pictures!

I'm sure I'll be really sick tonight since it's my last dose of antibiotics. We'll see how that goes. I'll work on the post about this weekend!

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.