ACT

This morning I took the ACT...the first real test I've taken in probably 2 and half years. It was hard, but we knew it would be. It's hard for people who have been in school. I just tried to finish every section, and I did. That was my goal. There were a lot of questions that I had no clue what it was talking about, so I just picked which ever answer looked nice. I tried not to stress too hard, but if you know me, you know that's hard for me. You see, before I got sick I was one of those people who did their homework right when they got home from school. I studied for everything and was a great student. School was easy for me, and I got good grades.

As you can imagine, this has been such a huge transition. I went from being on the honor role, to not knowing if I would graduate when I got sick. I had to stop going from school, and school became the least of my worries. I had bigger battles to fight. It's been very hard to accept, but there is no other option.

I have problems now from the Lyme and just not being in school. My concentration is not like it used to be. My memory and comprehension have suffered a lot. It's frustrating. My brain just works differently now, and I am having to re-train it to do things. Just like if you haven't stretched a muscle and you use it, it's not going to work how it used to and it's going to hurt. The brain is the same way. I've lost a lot of the knowledge I had before I got sick. I don't know if once I refresh the information it will come back, or if I'll to learn it all again. I think most of it will be math and how to retain information. It's so very frustrating to feel so behind and like I know nothing. I know that's not true, but it feels like it sometimes.

I'm sure when I start college, it will be hard to get back into school. But slowly I will do it.

"I can do everything through him who gives me strength." Philippians 4:13


I think I am going to be a nursing major. I have a passion for that and want to help people. I don't see it as a job, it's a ministry. I would have never wanted to be a nurse if I never got sick. How amazing is that?

So as I start to get ready for college, I will trust God and His plan. A lot of times I don't understand(like today and the school issues). But He says to lean not on my own understanding.

"Trust in the LORD with all your heart

and lean not on your own understanding." Proverbs 3:5

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

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.

Why I'm still not in school.

I get asked this question a lot. "Why can you do other things, but not go to school?"
I hate when I feel like I have to validate how sick I am, but I completely understand why this doesn't make sense to people.
Again it has to do with an invisible illness. If people see me out, they assume I'm 100% better and feeling good. This is not the case.
I cannot go to school for several reasons.

• I constantly run fever. You can't go to school with fever or you'll get sent home.

• My immune system. Do you know how much sickness is in school? I can't afford to catch every cold and flu that goes around.

• Weakness. There are days that I can't do anything but lay there. I can't even shower because I'm so weak, much less walk around the whole school, climbing stairs, and carrying books.

• Fatigue. This isn't just "I'm tired fatigue". It's wow! My body just isn't working.

• Brain problems. I hate the words brain fog because it sounds like a made up excuse. But my concentration, memory, and just brain function has decreased. I'm doing well if I can work on school at home for 30 minutes at a time.

• Medicine. I have been on pain medicine most days for about 3 months now for various things. I can't go to school on Loritab. Bad idea.

• Medicine schedules. Whether it be IVs or mixing liquid meds or taking them every hour sometimes, that just can't happen in school.

• Doctors appointments and tests. I have so many appointments and tests that are during school time. I've spent 11 weeks at my doctor in Nevada. You can only miss school for a few days each semester.

• General feeling. I can no way sit in school everyday because of pain, fatigue, migraines, dizziness, chills, fever, body aches, and different symptoms. Imagine trying to go to school or work EVERY day with the flu.

• Sleep issues. Generally, I am sleeping better. I still have nights where I don't sleep because of pain and other things. To be able to walk around the whole school and climb the stairs in the school, you need to be rested.

• ER trips. I go to the ER a lot. Sometimes during the day, sometimes at night. Sometimes I stay overnight. Again, I would miss so much school, that I wouldn't get credit for any of my classes.

Now, the reasons I can do some things like go to church, go out to eat, and things like that.

• They are only a couple of hours. Unlike being in school, if I don't feel good, I don't have to go anywhere. If I get somewhere and I don't feel good, I can just go home. You can't do that with school. I would not get credit because I would miss so much.

• Most times, going to church is the ONLY thing I do all week. I have to prepare by resting the whole week so that I can go to church on Sunday. The recovery period after that one day is then all week. When people see me out, they don't realize that that is the only time I have left my house all week.

• I'm allowed to be on medicine when I leave my house, unlike at school. Sometimes the only reason I can leave my house is because of pain medicine. I know that sounds bad, but it's true. Whether it be pain medicine for migraines, or general body pain, I'm forced to take it or I'll end up in the ER.

I hope this helps you understand more about day to day life for me. If you have any other questions, just leave a comment or email me and I'll answer them!

Walkin in Memphis...kinda

Well earlier this week my parents asked if I wanted to go to Memphis for part of the mission trip! Of course I said yes! We didn't decide for sure until the day before we left so I didn't tell anyone except my youth minister and one friend. I thought it would be great to surprise everyone!

My dad took me and my brother came too. We left Wednesday morning at 11 and got to Memphis at 7. Everyone was at the VBS they did at a church there so we went to the hotel and ate dinner and waited for them. The friend I told, came back to the hotel early with the moms that were on the trip to help us think of a surprise plan. That night, all the girls were going to have a little party in one of the rooms. So my friend and the moms got to the hotel around 8:30 and we went to the room to figure out what to do. We finally had a plan! Kevin (youth minister) called me at 9 and told me that they were on their way to the hotel! My dad, brother, my friend, and I ran up to another floor to wait. All the girls finally got there and got into the room. One of the moms texted us and told us to come down! As we got there and were waiting outside the door, they were leading a prayer for us. They had to come up with a reason why Rebecca (friend who was with me) wasn't there. So they said she needed some quiet time. They prayed for her and then prayed for me because they knew how much I wanted to be there and if it was God's will to let me be there with them. What a great prayer! Little did they know that I WAS there with them! So after the prayer was over I walked in and they SCREAMED and all ran towards me! It was so great! People in the hotel got mad because we were so loud...It was kinda funny!

The rest of the night we hung out at the hotel and had the nightly devotional. The plan was for my dad and brother to stay the night and then do whatever they wanted and come back Thursday night. I was going to stay with the group until they came home Saturday.

That was the plan...God had a different plan! I stayed in a room with my friends of course! They all went to bed and then I realized it was one of those nights. I knew sleep was not going to come. I tried some deep breathing and things I've learned but that didn't work. At 4am, I couldn't just lay there anymore because of the pain. I didn't want to wake them up so I went into the bathroom to hang out. Thank goodness for wireless internet! I decided to take a shower at 5am to see if that would help me sleep. It didn't so I got dressed for the morning! Might as well be ready by 5:30am right? At 6am I went to lay in bed again all dressed and ready.

I was using my Itouch and saw the Bible on there and thought maybe God was wanting to tell me something since I was up...the Bible was on the Message version and this is what I read..

2 Corinthians 4

"Since God has so generously let us in on what he is doing, we're not about to throw up our hands and walk off the job just because we run into occasional hard times. We refuse to wear masks and play games. We don't maneuver and manipulate behind the scenes. And we don't twist God's Word to suit ourselves. Rather, we keep everything we do and say out in the open, the whole truth on display, so that those who want to can see and judge for themselves in the presence of God.

3-4If our Message is obscure to anyone, it's not because we're holding back in any way. No, it's because these other people are looking or going the wrong way and refuse to give it serious attention. All they have eyes for is the fashionable god of darkness. They think he can give them what they want, and that they won't have to bother believing a Truth they can't see. They're stone-blind to the dayspring brightness of the Message that shines with Christ, who gives us the best picture of God we'll ever get.

5-6Remember, our Message is not about ourselves; we're proclaiming Jesus Christ, the Master. All we are is messengers, errand runners from Jesus for you. It started when God said, "Light up the darkness!" and our lives filled up with light as we saw and understood God in the face of Christ, all bright and beautiful.

7-12If you only look at us, you might well miss the brightness. We carry this precious Message around in the unadorned clay pots of our ordinary lives. That's to prevent anyone from confusing God's incomparable power with us. As it is, there's not much chance of that. You know for yourselves that we're not much to look at. We've been surrounded and battered by troubles, but we're not demoralized; we're not sure what to do, but we know that God knows what to do; we've been spiritually terrorized, but God hasn't left our side; we've been thrown down, but we haven't broken. What they did to Jesus, they do to us—trial and torture, mockery and murder; what Jesus did among them, he does in us—he lives! Our lives are at constant risk for Jesus' sake, which makes Jesus' life all the more evident in us. While we're going through the worst, you're getting in on the best!

13-15We're not keeping this quiet, not on your life. Just like the psalmist who wrote, "I believed it, so I said it," we say what we believe. And what we believe is that the One who raised up the Master Jesus will just as certainly raise us up with you, alive. Every detail works to your advantage and to God's glory: more and more grace, more and more people, more and more praise!

16-18So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever."

I just had to laugh...God smacked me in the face with that one.

Finally at 8:15 the rest of the world decided to wake up. I got up too and it was not good. I felt horrible. I made the hard decision to go back with my dad and brother and not stay for the rest of the trip. It always takes me days to recover from those nights. I was devastated and felt so defeated by this disease. Sometimes I really don't understand God's plan...I tried to go on the mission trip for 3 days and didn't even stay for 1.

So after 16 great and not so great hours in Memphis, we started the long drive home.

Five minutes after we left, our air conditioner went out. I'm not joking. Thankfully, it would work on and off. We left Memphis at 11am and got home last night at 10pm. It took us forever and not feeling well didn't help anything. I slept until 1 this afternoon and have done nothing but lay on the couch. Hopefully this weekend will be better!

Yesterday was history, tomorrow is a mystery, today is a gift

Birthdays are great! For most people it is just a time for celebration. Celebrating and hoping for another great year. But sometimes a birthday means something completely different. I have been sick for 3 years. Seriously ill for over a year. The past couple birthdays have been different than the years before. It marks how long I have been sick.
Last year was my sweet 16. It was on a Thursday. Three weeks before then, I had returned home from 2 weeks of treatments in Nevada. I had spent 3 weeks in Nevada in December so I had been there for a total of 5 weeks. When I came home from Nevada, I thought I was doing great!! The pain was better and I thought I could handle the fatigue and all the other symptoms. I thought I was in remission. But over the next 2 weeks I went downhill so fast. The Sunday before my birthday was the first time I was in the hospital. I went to church that day but I wasn't doing well at all. I was in so much pain and was so weak. I couldn't handle it anymore. Going to the hospital when you have Lyme Disease is very risky. There is no telling what could happen to you. But I had no other choice. That was the first time I had been in the hospital. Ever. (ok, I was born there but that doesn't count) My mom went shopping with my aunt after church so she didn't even know I was going to the hospital. For the time being it was just me and my dad.

First we went through the admitting process. We weren't sure what we should tell them or how much to tell them. I know that sounds bad, like why would we not just tell them everything? It's such a political disease and we had no idea how bad it could get if we told them everything. I went through triage and was put in my room. We got nervous as we waited for the doctor to come. Everytime I go to any doctor, I am the most popular and changeling person there. You think doctors would know this but just because the door to my room is closed, that doesn't mean I can't hear them. I have actually gotten very good at easdropping and understanding the technical terms doctor use when they talk about me. I'm not kidding, I am always the talk of the hospital. "did you hear about the girl that has Lyme disease? She's in room 3"
That is how it goes at every appointment.

So the doctor came in and we explained what was going on. Then the best thing happened. He admitted that he doesn't know much about Lyme and he asked us what I needed. He was the best doctor because he didn't try to act like he knew everything. He became our favorite ER doctor. In the months after that when I needed to go to the hospital we would call and asked if he was there.

So we said I probably needed IV fluids and pain medicine. Up to this point, I hadn't ever had strong pain medicine. So he said he would get some nausea medicine put in right before the morphine. By that time, my mom had gotten home and called us to see where we were. She freaked out and was like she's in the hospital?! Maybe we should have called her...So she and my aunt got to the hospital just as they were starting my IV. I had the nicest nurses that night. My main nurse was so good about getting everything I needed and she became our friend. Over the months following, she some how was always working when I was in the hospital. She would come and hang out in my room and just talk. She saw the fear we had and 100% supported us. I still love seeing her when I'm at the hospital!

Last year when I was really sick and was in the hospital every week, I would see her more than I saw my friends.

They finally got my IV started and got the medicines in me. They had to give me at least another dose of pain medicine because the pain was so bad. When I could finally go home, they told me to wait for them to bring the wheelchair. I remember thinking that I could just walk out. I tried to stand up and then fell. So I decided the wheel chair would probably be a good choice.

Later that week on my actual birthday, I got my licence! It was so exciting!! We went out to dinner for my birthday that night.

Two days later, on Saturday, I ended up back in the hospital because of extreme pain. Bummer. That started my weekly hospital trips. From then on, they knew me by name at the hospital. Everytime I walk drag myself in they would greet me by name! Actually they knew me as the Lyme Disease girl. That is the hospital I had surgery at too and it's where I'll have surgery when we take my port out. I had my PICC line put in there too! Oh and I was born there! It's pretty much my third home. My second home is at church. Do you know how much time my family and I spend there? It's a lot!

This is the first time I was in the hospital

So now, remembering the past 2 birthdays is weird. I was sick for my 15th birthday too. Not extremely sick, but still sick.

Last year I remember thinking that I can't wait for my 17th birthday because I would be better! But here I am. I'm not in school, I do IVs at home, I have 10 doctors, and I'm not better. Instead of thinking about how excited that I am that I'm 17, I am reminded about how long I have been fighting this disease.

That doesn't mean I'm not excited about my birthday! I am so excited!! So instead of dwelling on what has been taken away, I'll celebrate today. Today I am alive and I am SO blessed!!!!

Thank you so much for all the encouragment.

"If God gives such attention to the appearance of wildflowers—most of which are never even seen—don't you think he'll attend to you, take pride in you, do his best for you? What I'm trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God's giving. People who don't know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.

Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."
Matthew 6:30-34

I'm Still Yours by Kutless

"If You washed away my vanity

If You took away my words

If all my world was swept away
Would You be enough for me?
Would my beating heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives and takes away

If You take it all
This life You've given
Still my heart will sing to You

When my life is not what I expected
The plans I made have failed
When there's nothing left to steal me away
Will You be enough for me?
Will my broken heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives
And takes away

If You take it all
This life You've given
Still my heart
Will sing to You

Even if You take it all away
You’ll never let me go
Take it all away
But I still know

That I'm Yours
I'm still Yours

Oh, I'm Yours
I'm still Yours
I'm still Yours"

Tomorrow (the day before my birthday) my grandma is taking me out to lunch! She asked what I wanted for my birthday and I said a nice new Bible, so we're going to pick out a new Bible for me!! I'm excited!

This isn't normal? You know you're at my house when...

...you walk into our house and notice the pleasant smell of the hospital. It makes you wonder why our house smells like that. You would probably want to leave but that would be rude.

...you walk down the hallway and see huge containers. You glance at them and notice IV bags. You stop and look closer and see dozens of needles, masks, alcohal pads, gloves, syringes, and surgical stuff.

You stop and look closer and see dozens of needles, masks, gloves, alcohol pads, syringes, and surgical looking stuff.

...you walk into the kitchen and notice tons of medicine on the counter.

...you look at the kitchen table and see masks on my mom and I, and figure out that she is accessing my port. All the medical supplies are spread out on the table to make it a sterile enviornment.

...you go to get a drink in the refrigarature and notice more medicine bottles.

...you walk into the living room and either see me hooked up to my IV pole or see the IV pole just in the room

(this is what I would look like hooked up to an IV. Minus the beach...)

...you go up to my room and see on the table by my bed a thermometer, medicine, more medicine, a breathing machine, and surgical tape.

All of this is now normal to us. I guess I forget that no one else has these things...

A year ago

A year ago if you told me that I would still be sick today, I wouldn't have believed you. I knew there was no way that I could still be sick. But here I am today, still sick. No, I didn't want this. But God has renewed His promises every day. Some days it is easier to act like everything is normal. But then there are those days that reminds me how horrible this disease is and what it has done to my life. I just want to say really?! Is this really happening?

We live in a culture that says we're supposed to always hide our struggles and be fake. If we never talk about our struggles, how can we tell others what God has done in our lives or even realize what God has done in our lives?

The past holidays have been days with lots of food and games. Then there was this year.. Diseases don't take breaks for the holiday's or your birthday or work around your plans.. They are a constant reminder of the reality of sickness.

This year, I didn't have an appetite so eating wasn't something to look forward to, which I hate because I love food! I love all food and before I got sick I ate all the time. It's weird to get nauseous even if someone just mentions food. I'm the oldest of my cousins but I couldn't really play with them because I was in too much pain or too tired. I had to spend today hooked up to an iv pole and I cried because of the pain.

And yet, despite all of this, I am more thankful than I was a year ago. No, none of this is fun or what I asked for, but I am SO blessed. I have hope about something better. I know that one day I won't have to deal with all of this in heaven. I am one of the luckier ones with this disease. I don't have seizures or paralysis which is something to be so thankful for.

I'm very blessed and thankful for everything God has given me. A lot of times I forget what I do have because I focus on what I don't have.

Days like today just remind me of how much my life has changed in the past year. Lot's of bad things have happened and are still happening. But spiritually, more good has come out of it than bad. Yes, there are lots of days when I just say "why?!". But I'm learning to trust God in every situation and remember His promises because He is so faithful and never lets us go.

The days seem so long since I can't sleep. It's 6:15am and I still haven't gone to sleep. I'm so worn out. So please pray that I will be able to get some sleep in the next few days.

Last night I was upset about being sick on Thanksgiving and I looked at the sunset and was reminded of God's awesome power and peace that He gives. I love all the reminders He gives us.

These are some of my cousins! They are great!

When the Tears Fall by Newsboys

"I've had questions, without answers
I've known sorrow, I have known pain
but there's one thing, that I'll cling to
You are faithful, Jesus You're true

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

in the lone hour of my sorrow
through the darkest night of my soul
You surround me and sustain me
my defender, forevermore

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, I will praise You
when the tears fall, still I will sing to You
and I will praise You, Jesus praise You
through the suffering still I will sing

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

oh yes, You are good to me
You've always been good to me
so trustworthy

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, and I will praise You
when the tears fall, still I will sing to You
(I will sing to You) I will praise You,
Jesus praise You through the suffering
still I will sing

how faithful and true
sustain me through and through
You are hope and truth
You're my spring of living water
You're my spring of living water

in the lone hour of my sorrow

who springs never fail
be faithful and true
like...
like a spring it never fails
you're my spring never fails"

"For I hold you by your right hand—
I, the Lord your God.
And I say to you,
‘Don’t be afraid. I am here to help you." Isaiah 41:13
"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

Thank you so much for all your prayers.

Laughter is the Best Medicine

I'm finally getting over this upper respiratory infection! I had a really hard night last night though. The pain was worse than normal. My joints hurt so bad. Right now the worst pain is in my knees and elbows. Last night nothing was helping the pain. I took my pain medicine which usually relieves the pain some. It didn't do anything last night. I read until about 2am then it went downhill from there. I was hurting so much and just wanted to go to sleep. At 4:45 I took another bath to help the pain. It was the fourth bath that night. I finally fell asleep at 5:30 but still woke up a lot. It was such a long night.

Right now I'm doing an IV and later I'm doing a homeopathic pain medicine through my PICC line called an arthritis push.

These are some funny things about everyday life with Lyme. You have to learn to laugh at all the silly things that come along with being sick.

"You Might Have Lyme if...

-You know what LLMD (Lyme Literate Medical Doctor) means, and you have one.

- At an appointment with your LLMD the nurse has asked why you are "all dressed up" when you wore sweat pants without holes in them instead of PJs to your appointment.

- Showering is a two hour process with a three hour recovery period.

-Some days are "shower-optional".

-The happiest day of your life was the one when you were diagnosed with Lyme.

-When you were diagnosed with Lyme you cried, shouted, or hugged your LLMD (which was slightly awkward for both of you).

-They know you by name at your local ER.

-You have more pills in your closet than a drug dealer.

-Your pain management specialist has informed you that your regiment of painkillers should be enough to tranquilize a horse, but they have little to no effect on you.

-You can't sleep even though you're always exhausted. See above for horse tranquilizer dilemma.

- The list of foods you CAN'T eat is longer than the list of foods you can.

-Your BMI is so low that you legally couldn't be a runway model in approximately ten countries.

-You have mysterious bruises, despite spending the majority of your day in bed.

-You (or your mom, dad, or caretaker) has come thisclose to having a fist-fight with a nurse or doctor who wasn't being sensitive enough to your needs.

-You bribe your home nurses with candy so they'll show up on time and keep the poking to a minimum.

- You cry if you have to go away for the night and realize when you get there that you forgot to pack the Glad Press 'n Seal wrap. (for showering with the PICC line)

-You have a PICC line, and were initially paranoid about keeping it sterile when the doctor who put it in told you a bunch of horror stories about sepsis, but now you don't even usually remember to cover in in public.

-You are totally un-phased by people staring at you in public. You suspect it might be due to your wheelchair, PICC line, Michael Jackson style surgical mask or something, but who really knows?

-You laugh when you and another Lyme friend simultaneously have to go to the ER, and swap amusing stories when you get back.

-Your favorite day of the week is "dressing change day" and you (politely) demand that your nurse scratch your arm with gauze for as long as possible.

-You can't watch commercials because of the sudden changes in light and noise, and you think that sort of thing should probably be illegal.

- Your friends no longer think its odd for you to randomly burst out laughing and/or sobbing.

-You've also devised tricks to scam your insurance company to pay for rejected medications.

-Your LLMD is programmed in your phone and under recent calls all too often.

- Your nurse gives you her personal cell number, and calls you just to chit chat.

-You look forward to having wheel chair races with the next person up to the challenge!

-Your sister goes to get her picture taken and someone says “say cheese” but she says “ LYME DISEASE!” instead.

- You could probably draw your own blood. And instruct the nurses which vein to use.

-When you can read your blood work better than your PCP, nurses, and most medical students.

-Going to the doctor is considered an outing.

-You are able to diagnose other Lyme patients before 20 specialists can.

Add LOTS more, everyone! Every case of Lyme is different, some are more severe than others, but I hope we can all have a giggle about its quirks while we're working to get well. We can beat this! Hope this puts a smile on your face!"

"He will once again fill your mouth with laughter
and your lips with shouts of joy." Job 8:21

Hard Week

The doctor finally called us back and said I have a virus. I've been feeling really bad and couldn't even go to church Wednesday night. It's going to take a while to recover. So I've been doing IV fluids and breathing treatments every 2 hours. I have a rash all over my back and we're not sure why. It doesn't itch or anything, it's just there.

Several people have been asking about my PICC line (peripherally inserted central catheter) and IVs at home so here's some pictures and details. The PICC line goes all the way from my arm to my heart through a vein. One PICC line can stay in up to a year if it is well taken care of. Most people have theirs 4-6 months. It can't get wet at all, which makes showering very difficult. When I get the PICC line out it will be great to shower again without having to wrap my arm in plastic wrap and tape and hold it above my head.

I can start the IVs and everything by myself, which is great. Not very many people get to become nurses at the age 16..try not to be jealous. Ok, real nurses do a whole lot more than I do.

Everyday I have to flush it with saline and heparin. An IV takes about 3 hours. Sometimes I do 2 IVs back to back so that's 6 hours. It's great fun, trust me. When I'm not using the PICC line, I wrap it up in a mesh wrap so that it doesn't get pulled out. I've had a few times where it has gotten caught on something and almost came out.

Flushing it with saline

All hooked up to an IV.

Flushing it with heparin.