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Monday, March 29, 2010

"Do not take this medicine if you are allergic to it."

That is the warning on one of my medicines. I'm glad they cleared that up for me...Do they really need to say that? I guess so...
Also, if you ever read the side effects for your medicine, you might get really confused . For example, the beta blocker I was on, said it might cause drowsiness and dizziness. I was put on this medicine to try to help the dizziness along with many other things. My sleep medicine says may cause drowsiness. Umm isn't that the reason I'm taking it? There are so many funny things like this. Like anti-depressants cause depression. What? Some things I will never understand.
I'm still sick with whatever I have and I'm up a lot during the night coughing. At least I can talk now!
I'm starting the new treatment plans soon. We're working on getting a schedule made because there is so much to take. I have started 3 medicines already. They are liquids and I put 2 of them in 4 ounces water in a glass cup. I put 10 drops of each in the water and then let it sit for 1 minute. Those don't taste too bad. The other liquid, I just swallow. It is so gross. I'm pretty good at taking medicines no matter their taste but this one is a little over the line. I put 30 drops of it in my mouth for 30 seconds then swallow. It has a nasty texture of something that should be illegal to swallow. It tastes like extreme salt water mixed with some other nasty stuff. I am supposed to do all of that 4 times a day...
Tonight I am going to a unique Bible study about spiritual disciplines. I will tell you how it goes! I'm really excited.

Monday, March 22, 2010

very sick...

Saturday night I started my new heart medicine. Sunday morning I woke up with no voice and bad chest pains. More things kept going wrong as the day went on. My throat and ears starting hurting so badly. It felt like there was fluid in my lungs and it hurt to breathe. Because of the snow, church was held at 3pm. So we just hung out at home until then. Since I couldn't talk, I used my itouch to communicate. I spelled out words on it and then passed it to my parents. I also used a lot of pointing and hand motions. I wasn't doing well at all. I asked if I could go to church so they agreed to let me go and then planned on taking me to the after hours clinic. When we got to church I realized how sick I was. This happens a lot. I think I am feeling okay at home because I'm not around people or doing anything that takes much energy. Then when I actually leave my house I realize how tired I am.
I was sitting with my friends at church and I knew I couldn't make it much longer. I texted my parents (yes I texted them during church...don't tell.) and told them I needed to leave. So I watched for them to get up and leave the auditorium and then I left too. We got to the after hours clinic and filled out the paper work. They give you a couple papers of symptoms to check off. Most people take like 10 minutes to fill this out. I take less then 2 minutes because I have it memorized. That saves us a lot of time!
They took me back to check my vitals. My blood pressure was a little high for me, which means in the normal range for normal people. My pulse was 144 bpm. I could have told them that because when your heart rate is that high, you definitely feel it. My oxygen was 100%!
The nurse took us to my room and started asking me lots of routine questions. It's a little hard to communicate when you can't talk. By then I could whisper but it hurt so bad and took so much energy.
The doctor came in and listened to my lungs and looked in my ears. He said my ears were fine! He definitely heard something in my chest. He explained that with young people, their lungs can work well and their oxygen level can be 100% but they could still have pneumonia or fluid in their lungs so I had some chest xrays. After he saw it he said that my lungs looked okay. There was a little fluid but not much. He also said that my colon is swollen or something and it is pressing against my lungs which is causing a lot of pain. But he didn't say anything else about that so we guess it's fine.
This was his advice. "lets watch this very closely because this could be the beginning of pneumonia so call me if you get worse." uhh thank you? I was really upset from all that. Really really upset. He did nothing for me.
I feel horrible. I'm weak, I have fever, my chest hurts, my throat hurts to the point that I really can't eat, and I still can't talk. I can whisper but it hurts a lot.
He said it could be caused by the new heart medicine and that my body might just take a while to get used to it. So we don't really know anything. We don't think it's the heart medicine though.
Last night I was up a lot because of my throat. Today I have done nothing but lay down and catch up on some tv shows. But it's not even fun to the watch tv because I feel terrible. My grandparents brought me a shake so I had that and it was really good!
The past 24 hours, I have sucked on cinnamon candy non stop to help my throat. I am probably getting addicted and I don't even care. I need it to survive.
Hopefully the next few days will be better and not worse.

Saturday, March 20, 2010

Quick update about the beta blocker and side effects!

Yesterday my family and I drove to Dallas for the day! We had dinner at our favorite restaurant, Pappadeaux! And of course my mom and I had to go to a few shops. Our excuse? Well dad, here is the reason. I am starting on lots of new medicines. So mom and I need new purses and bags to carry all my medicines and supplies!! Best excuse ever? I think so!
We left for Dallas around 1 yesterday afternoon! My cardiologist called when we were in the middle of no where so it was hard to hear him. My mom told him about all the side effects I'm having and he said that the medicine is causing that. Uhh DUH!! Thank you captain obvious! I'm so rude like that...it's the meds, except my family says I'm always like that...probably true!
He told me to stop taking the beta blocker! I'm so glad! He said that every beta blocker will cause those problems. So unless there is no other option, I won't be on beta blockers. He is starting me on a medicine that they give people with heart failure and just heart problems in general. I'm starting that tonight. We are praying that I can tolerate this medicine better.
It is so weird because I just stopped taking the beta blocker last night. Today my heart rate is back up to 130-140. It's amazing how fast it came back...I'm all shaky and jittery from it. Hopefully it will go back down soon!
We got home from Dallas around midnight last night. Now we are sitting at home watching the blizzard. We wore shorts and tee shirts yesterday and now we can't leave the house! It's crazy!!

I hope you are having a good weekend!

Thursday, March 18, 2010

Side effects just stink

Side effects really stink. I'm tired of all these side effects. I'm tired of having to take medicine for the side effects caused by another medicine. This beta blocker medicine is making me CRAZY. I am not myself at all. I'm not in a good mood about anything and I can't control how I act. It's like I'm a completely different person. I am spastic sometimes and then suddenly I will just crash. I feel so weird... My mom called my cardiologist so we are waiting for him to call us back. I'm just not tolerating this medicine at all. The doctor should call us by tomorrow.
We got the okay from my Lyme doctor to resume treatments again. We really need to kill the Lyme so that it doesn't damage my heart or anything more than it has. So I am starting the new medicine that helps my joints. Guess how many pills I have to take a day? Okay I'll just tell you... Eighteen pills a day. That's right, eighteen a day. I'm starting back on all my other medicines too. That means that I'm going back to the 20 pills of supplements too. I'm also starting back on the butt shot everyday. There's a new medicine to kill the Lyme that comes in a liquid. I start with 1 drop a day because it is so strong. We are praying that I don't have bad herx reactions from the toxins from the bacteria. There are a few other liquids I will take.
I'm also still taking my heart medicine and sleep medicine and sometimes pain medicine.
So in one day I will take over 40 pills, a couple shots, liquid medicines, and an iv.
Good thing I am a pro at swallowing pills.
That's a quick update about everything. We are praying that we will hear from my cardiologist tomorrow and can come up with a new plan.

Wednesday, March 17, 2010

Dear construction workers,

We are not friends anymore. Now that you live across the street from me, I just wanted to tell you whats going on between you and I. We have been spending too much time together and I've decided that it's just not going to work out.
I am sending you my resume because I think know that I can move around dirt faster than you.
Also, I would appreciate if you would go green like the rest of the world, and not use machines that use so much fuel break my ear drums.
I do not approve of your 6am - 6pm dirt moving party. I repeat, I do not approve. I did not invite the deep rumbling noises you cause to my party of nausea and sensitivity to noise. I already have too many fun side effects from me, myself, and I.
I ask that you stop your dirt moving parties now.
Thanks for not going green,
Victoria

Tuesday, March 16, 2010

The process of accessing my port

This is the heart monitor that I wore for a little over a month! The cell phone had to stay with me at all times because the heart monitor sends it's information to a computer through the phone. Alarms would go off all the time for no reason. I put those circles on my stomach and chest and then attach the wires to them. I'm allergic to the circular pads which meant I had hives those wonderful 5 weeks!

My port is on the right side of my chest (opposite of my heart). You can actually see the tubing that goes from my port to my neck and then to my heart. You can see it right under the skin.
The port is attached and tied to the muscle in my chest. My mom and I had to go through training to be able to access the port at home by ourselves. Obviously this is taken very seriously since we are putting a 1 inch needle in my chest, that connects to my heart and has to be completely sterile. This procedure is not taken lightly.
First my mom puts on a mask and gloves. They aren't sterile gloves for this part. The first thing we do when accessing my port is cleaning the skin in a circular motion with three different sterile clothes with the Hydrogen Peroxide.
Sterile pads and Hydrogen Peroxide


While that dries we prime the needle. That means that you take the needle connected to a line and push saline through the line to get all the air bubbles out. You can only touch the end opposite of the needle because the needle has to stay sterile.

Priming the needle


The syringe on the left is the saline that we prime the needle with. When I'm done with an IV and the needle and line is still in, I take the syringe of saline and flush the line again. Then I take the syringe on the right and flush it through the line. The syringe on the right is Heparin. That is the most important part to make sure that I don't get a blood clot in my port and line.





Once we prime the needle and the Hydrogen Peroxide dries, we take 3 more sterile cloths and clean the skin with Alcohol in a circular motion.

While the Alcohol dries, my mom switches from regular gloves to sterile gloves. There is a certain way to put on gloves so that it is completely sterile.



Once the sterile gloves are on, she carefully picks up the needle and line. Then she grabs my port on both sides with one hand and pushes the 1 inch needle in my port with the other hand. She has to push very hard because it has to go through the skin and a mesh material to get into the port. Once she thinks she's in she takes the syringe of saline and puts a little saline in and then pulls back on the syringe to see if the needle is in the port. When she pulls back we are looking for blood return. All that means is that when she pulls the syringe back, blood should come out, meaning that the needle is in place! If we don't get blood return, that means that the needle isn't in the port, which means you start all over! In the actual port, there is blood that just sits there. That is why the Heparin(blood thinner) is so important.
This is a diagram on the port. You can see how far the needle has to go to get into the port. As you can see it shows the needle a little outside of the skin. The needle isn't flat on your skin. Part of the needle just sticks out! It's weird. The IV goes through the needle, into the port, all the way through the catheter, into a big blood vessel (the jugular vein) and straight to my heart.


Here is my mom putting the needle in. You have to grab the port by the sides and push really hard to get the needle in. You can see how much the needle sticks out of my skin.


Here's the needle in with the tube that connects to the IV or whatever you put in your port. Once we get blood return we put a dressing over the needle and port to make sure it all stays sterile and holds the needle in.

Once I'm done with the IV and I flush it with saline and Heparin, my mom puts on new sterile gloves and we take the dressing off the port, my mom grabs the port again and applies pressure and pulls the needle out. You have to pull really hard to get the needle out since it is in several layers of things. When you put the needle in and take it out, you have to make sure and hold the port firmly or the port will flip over and move around and that would obviously be horrible!
This is all the mess after accessing my port!
That is the whole process! I do this about every other day! There is no easy or quick way to access my port. This is what we have to do every time.
Sometimes I leave the needle in longer than a day if I am going to do an IV two days in a row. It can't get wet which is a challenge. I don't like to leave it in though because the needle hurts all the time when it is in. When you're in the hospital they can leave the needle in up to 5 days but then they have to do this process all over to put a new needle in. The longer you leave it in, the greater risk there is for infection.

This is an IV bag and the tubing. I can start my own IVs which is good!


Spring break does not include a break from medical things.

This is the Bible I got! I love it!!

Thursday afternoon I got my hair cut. I was really tired but I went anyway. After my hair cut I went to my grandparents house to show them a video. By the time I got home I felt horrible. I hurt so bad and was more exhausted than normal. I took my temperature and I had fever. Awesome. I was also nauseous all day so I'm didn't eat much. Friday morning I woke up feeling the same way. I did okay all day until around four or five. We had people over for dinner that night and it was more than I could handle. My parents asked if I still wanted them to come over and said yes because I really wanted them to come! By the time they came I really didn't feel good. When it was time to eat my mom handed me my plate but I shook my head saying that I couldn't eat. She said I needed to eat. I broke down because I felt so bad so she gave me nausea medicine and pain medicine.
Saturday I did nothing at all. I layed on the couch all day.
Sunday I almost didn't go to church but I knew I should at least try. So I went and it was good! Ever since Sunday I have had muscle cramps all over. That never happens to me but it is not fun!
Yesterday I did an IV and rested. We called my heart doctor and asked if it was time to get rid of my heart monitor. So now I am free from the heart monitor!!!! They said it will take a few weeks to get the results.
My mom talked to my Nevada doctor yesterday. He thought that the strength of the beta blocker I'm on seems a little high to start with. Since beta blockers are also used for lowering blood pressures too, he wants us to check my blood pressure at least everyday. My blood pressure is already so low so he wants to make sure it's not lowering it.
He told us that the Lyme effects the heart sometimes by messing with the electrical system of the heart.
We told him that my pain and concentration have been getting worse. The pain is probably caused by two things. I could have a current Lyme infection that is causing all the pain or the Lyme has done damage to my joints. It could be and probably is a little of both. I'm starting on an arthritis medicine that helps with joint damage. I'm also starting more medicine to kill the bacteria. I am starting a natural concentration medicine too.
He decided to switch my pain medicine since I have been using it off and on for a long time. He is giving me an extended release medicine that is used for people that need something for long term pain. He thinks this will be better for me so that it lasts longer than what I had.
I have been feeling so tired and out of it ever since I started the beta blocker. I know it's the side effects but it's so annoying! I feel the same as when I was on steroids for a few months. I don't feel like myself and sometimes I feel like I'm going crazy!! It's hard to explain what it's like. But if my blood pressure is stable, I have to stay on the beta blocker. With every medicine I'm on, it's hard to see if the side effects are worth staying on the medicine. But I have no choice on this one! Hopefully I'll get used to it..

Thursday, March 11, 2010

I'm Still Yours! How Great is out God.

On Monday night I got to go to a Bible Study, where we actually studied the Bible...I feel like a lot of times we don't actually study the Bible when we go to a "Bible study". I think a lot of times we focus on trying to entertain rather than just reading the Bible and learning through others.
We are all at different places in our lives. We have different struggles and strengths. It is so amazing to be able to read the same scripture and yet get out of it different things. God comes to each of us where we are then. He speaks different things through scripture that deals with where we are in life. We had about 14 minutes to read the whole book of Colossians or just read a section over and over focusing on a different word every time. Once we came back together we started talking about things that stuck out to us. The first thing we talked about is how the book of Colossians is all about the supremacy of Christ. It's telling us to put God at the center of our lives because without Him we would have life. If everything was taken from us, would we still praise God?
There is an amazing video about how big God is. It's called How Great is Our God and it's long but so worth it. It's on Youtube and it's split up into sections. I SO recommend watching it. In that video it talks about human DNA and how small atoms and everything are. The video explains this but there is something called Laminin inside us. It is so small, and yet it is the ONLY thing that holds our body together. Guess what it looks like? It is a CROSS. The thing that is holding us together is the CROSS. It is life changing to think about. Here is the link to the section about Laminin. Please watch it. It's not long and it incredible. Let me know if you have any thoughts when you watch it.

"He is before all things, and in him all things hold together." Colossians 1:17.

WOW. God is amazing.

Last night at church we heard a story about a man who moved to the United States and converted to Christianity. There were two reasons. He said that where he came from no one was loving towards others. Those high up in religion would walk past poor and needy people. He came here and saw that Christianity was different than most religions because it teaches to love and serve everyone. He had never seen people care about other people as much as the Christians that he saw. The other reason he converted was because he realized there is no one like our Savior Jesus. It all comes back to love and sacrifice. There has never been anyone who would die for a person who was sinning even when He gave His life. He died because I am living in sin. We can't be in Gods presence with our sinful lives because God is so pure and can't be in the presence of sin. But when Jesus died, the veil was torn. There had to be human blood as a sacrifice so that we won't be separated from God. Jesus died because of ME and my sins. The man who was converted has so much passion to tell others about God because he has seen that God is real and is working.
We were asked a question last night. If this man, or anyone, followed us around, would he know that we follow Jesus? We always celebrate the resurrection of Christ so much! But we forget that he DIED. He took one last breath and DIED, even though we are the ones who should die. We need to start living life with as much passion as a new Christian who gets how big of a sacrifice that is. We are too laid back with our faith. And because of Jesus dying we have LIFE. Eternal life. Why would we not want to show love to everyone? Showing love to people is a great start because then they might ask why we love people so much.
This is a song I recently heard. I love it.
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
You take it all away and I still know
That I'm Yours, I'm still Yours
Oh, I'm Yours, I'm still Yours

Tuesday, March 9, 2010

What going to the doctor could mean....

I was thinking about when I say "oh I'm going to the doctor". I realized that statement can mean so many different things for me. When I say that people probably just think about a check up that they would go to.
I have been referred to specialists who have referred me to more specialists and on and on.
So going to the doctor could mean...
...going to Nevada to my Lyme Doctor for weeks at a time
...going to a pain management team at Children's Hospital for body pain from Lyme
...going to a cardiologist for an EKG and Echo tests
...a trip to one of the many hospitals I go to for blood work
...going to my primary care doctor for more blood work or more tests
...going to one of my doctors in Oklahoma but a couple hours away for some different IV treatments
...going to anyone of these doctors and more to update them on my current status and talk about medicines and side effects (these appointments are usually 2 or 3 times a week with different doctors)
...we have telephone appointments with many doctors
Usually both my parents go to all of my appointments since every appointment has to do with critical subjects. Nothing is taken lightly.
Sometimes these appointments are an hour or so. But some are sooo long. We have spent from 1:30 PM to 5:00 PM with no breaks talking to my Seminole doctor. Then I did an IV after that.
There is no such thing as a quick doctor's appointment.
Yes I hate going to appointments. There are too many. But since I go to these doctors so often, they have become friends. (Friends as in I feel at home when I'm there. Feeling at home meaning I know what the routine is and I'm comfortable with everyone there)
And when I get referred to new doctors I am not happy. It means explaining everything from the beginning. Starting with my health as a child. So those appointments are for sure going to be a few hours because just us explaining everything will take over an hour.
Obviously there are lots of appointments that do not go well. There are test results that don't come back good or doctors not knowing what to do. There have been many explanations that are no where to be found. The doctors can't find what is causing problems. But that gives us a chance to tell my doctors the story of Christ. Medically my case is so challenging. So challenging that I get rejected by doctors or we're told that there is no way to fix this. But Christ has promised hope of something better. Our physical bodies are going to break down and eventually die. That is known. But we are given eternal life. One day there will be no sickness, loss, grieving, worry, hate. So until then we want to tell everyone about the hope that we have already taken part in.
How do we spread this wonderful news? By showing love to everyone. If we don't show love to people and think that we can spread the news of Christ, then we are wrong. How could we not love when we are teaching about the one who gave us eternal love? We don't want to be hypocrites. Just genuinely loving others is a way to start. People will see something different about us and will ask what it is. Then we can tell them more about the hope and promises that God gives us.

"1If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. 2If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. 3If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing."
1 Corinthians 13:1-3

"And now these three remain: faith, hope and love. But the greatest of these is love." 1 Corinthians 13:13

So the way we talk to my doctors is a chance to tell them about Christ. We would have never gotten this chance if I had never gotten sick. God works in amazing ways.

"And whatever you do or say, do it as a representative of the Lord Jesus, giving thanks through him to God the Father." Colossians 3:17

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.17For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18

Monday, March 8, 2010

Spring break...hospital style

Two years ago, my freshman year, I got to go skiing with my youth group! It was the first time I had been skiing. It was one of the best trips I've been on! Last year, I was planning on going on the ski trip again, but I wasn't going to ski. I know that's weird but I wanted to go so bad! A few days before the ski trip I backed out. I knew there was no way I could ride 12 hours on a bus plus try to survive the trip. I was in too much pain. So they left on Saturday morning, coming back Wednesday night. I just planned on staying home all spring break.
Saturday night I didn't sleep at all. Sunday morning while my parents were getting ready for church, I begged them to take me too the hospital. I was in so much pain and was so exhausted. So we were off to Children's Hospital...my whole family. We got to the hospital around 11 am. I got checked in at the ER and went through triage. It was the first time I had been to Children's ER. I usually went to a different hospital. We got to my room pretty soon. Okay by room I mean curtain area. We waited for the doctor to come. Remember how I'm always the talk of the hospital? Well curtains aren't very private so I could hear them say "oh wow there is girl with Lyme Disease here". Apparently when someone checks in, the reason for visit pops up on everyone's computer and monitor. The doctor came in and let's be honest, I didn't like her at all. The first thing she said was "well you look pretty comfortable for claiming you're on a lot of pain. You don't look like you're in pain". Now that made me a little angry. Oh I'm sorry, I've just gotten used to being in pain from this disease so I am pretty good at hiding it. She didn't want to give me morphine because I'm a "child". So she said she will get me some pain medicine that isn't very strong because I'm a "child".
A nurse comes in with the IV cart and gets my IV started. He scanned my bracelet, scanned the medicine, and put the pain medicine in my IV. He put the pain medicine in and in less than 2 minutes, the pain was worse and I got so hot and itchy. Oh no, I'm allergic to it! We yelled for the doctor and told her I'm allergic to that medicine. Obviously they can't take the medicine out of me, so I had to deal with it until she finally agreed to give me morphine after she went and talked to another doctor. She would come and go like that for a long time, accomplishing nothing. We asked if there was an infectious disease doctor there. There wasn't. (God was watching out for us! We hadn't learned yet that we don't want to mess with infectious disease doctors) the morphine helped a little but quickly wore off.
I asked for more because the pain was back to being horrible. She agreed. By this time my brother and dad had gone to get food and my brother went with my aunt because we knew we would be at the hospital a while. One of my nurses was amazing. She put in a movie for my parents and I. I have no clue what the movie was. Haha I was out of it! She kept bringing warm blankets to me and she sat on my bed and watched the movie with us. She pretended like I really needed her so that she could just hang out with us. I was getting tired from finally having a break from pain. We turned off the lights for a while. Since it's only curtains, it is really not quiet or dark. I just watched people walk back and forth as the curtains moved from people walking by. I was also enjoying listening to peoples conversation. I'm so nosey like that. I fell asleep off and on for a while. A few hours later I needed more medicine. I had to wait a while though since I had already had so much. The doctor was convinced that I should gave been better by then. The problem was that I wasn't. This time I broke down begging to be admitted. She REALLY wanted me to go home because she didn't know what to do. She left and went to talk to someone and came back with another doctor who agreed to admit me. It was around 7 pm when this happened. I had been in the ER for 8 hours.
Before I was taken to my room they gave me this cute little box of things that they give to every kid admitted. It had a journal, stars for your rooms door, a bracelet that says I am special, a stuffed star, and a prayer star. It was really cute! I still have it actually!
My mom left to go home and pack things for the hospital. My dad stayed with me and a nurse took me to my room. My room was the first room you come to when you get off the elevator. My nurses came in and talked with us for a while. Then they came back to take blood for tests they wanted to run. They tested me for lupus, ms, and other stuff like that. Pain medicine makes your mouth dry and makes you so thirsty. I had one of those huge cups that they give you in the hospital and I drank so much water that night.
Then the floor doctors came. We told them what was going on and they wanted to run tests too. They made me walk around and tested my strength and weird things like that. They left just before my mom came back. We got settled in and my dad went home for the night. My brother was spending the night at a friends and he didn't even know I was admitted. When the nurses came in they told me to stay on top of the pain and ask for medicine before it got out of control. I followed their rules but got rejected, several times through out the night. Apparently, the ER doctor said I couldn't have anymore. So the whole night I got nothing.
I went to sleep and the nurses checked my vitals during the night like normal. Then at 7 AM new doctors and nurses came on. That means that I got to meet the new nurses...at seven. AM. Then the floor doctors made rounds soon after that. I think there were at least 5 doctors on my room during rounds. They talked with my mom for what seemed like forever. I went back to sleep. Even though I had to wake up every couple hours to check my vitals, I slept so good. It was great.
My dad came to the hospital sometime in the morning. The cafeteria called us because I missed breakfast. They said I needed to eat something so I ordered toast, chicken noodle soup, and some other things. Let's just say that I only had a couple bites of toast. I'm not sure if they know what chicken noodle soup is...because let me tell you, it was not the kind of chicken noodle soup that the rest of the world eats. I moved stuff around on my tray so that it looked like I ate more. I'm such a rebel I know.
I don't remember when I got to go home...
Back in October when I had surgery to put my port in, I was at a different hospital. When I was taken to holding, the surgeon, anesthesiologist, and nurses came to make sure everything was ready. A doctor came in with my surgeon and she said she knew us. I had no clue who she was. But she said "I saw you at Children's hospital in the ER like 7 months ago". Oh my...I guess she remembered me since I have Lyme Disease. Okay I know that's why she remembered me. She was there to watch my surgery for some reason. It was very weird that she was there!!
So, with spring break next week, I am determined to stay out of the hospital! My youth group is going skiing again and I am so jealous! I will just be hanging out here! Diseases don't take breaks so I will still have to do IVs and everything.
This is a new song that I heard. I love it! At Winterfest(Christian youth conference weekend) in Dallas this year, the theme was The Veil. I think I told you all about it. Then a few weeks ago I heard this song having something to do with the veil.
MercyMe - All Of Creation

Separated until the veil was torn
The moment that hope was born
and guilt was pardoned once and for all

Captivated but no longer bound by chains left at an empty grave the sinner and the sacred resolved

[chorus:]
and all of creation sing with me now
lift up your voice and lay your burden down and all of creation sing with me now fill up the heavens let his glory resound

Time has faded and we see him face to face every doubt erased forever we will worship the king

[chorus]

and all of creation sing with me now
lift up your voice and lay your burden down and all of creation sing with me now fill up the heavens let his glory resound

the reason we breathe is to sing of his glory and for all he has done praise the father praise the son and the spirit in one

and all of creation sing with me now
lift up your voice and lay your burden down and all of creation sing with me now fill up the heavens let his glory resound


and every knee will bow oh and every tongue praise the father praise the son and the spirit in one




"But whenever anyone turns to the Lord, the veil is taken away. Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom. And we, who with unveiled faces all reflect the Lord's glory, are being transformed into his likeness with ever-increasing glory, which comes from the Lord, who is the Spirit." 2 Corinthians 3:16-18

Spring Visit!

Spring sing at Oklahoma christian was great!! We just hung out on campus! We didn't do any of the formal things like campus tours since we have grown up there.
When we registered for spring visit on campus Friday they had us fill out an application to Oklahoma Christian so they would have all our information, even though we're juniors. Everyone was talking about making sure they knew graduation dates or had a good GPA...I couldn't fill very much out on mine. The least of my worries was graduation dates or good grades. I don't even know when or if I'll graduate. I know I've said this before, but it is so hard to try to do school with everything else going on. I either am too sick to do school work, or I feel okay and I want to get out of the house. I don't have any kind of schedule because things change minute by minute. We have learned that school is not the most important thing right now. I learned to accept that what I get done in school will have to be okay. The Lyme Disease has made my concentration horrible. It's messing up a lot of things. I used to be in advanced classes and I had great grades. Now I'm so behind and can only work on school maybe 20 minutes a day. I know that's hard to understand, but that's all I can do. It's really frustrating. But I'm still learning to accept it and be proud of what little work I do get done.
When I got home Friday night, I was taking my heart monitor off so that I could take a bath and I noticed that my hives had been bleeding...the whole night. There was blood everywhere on my stomach where the hives are. Not a pretty sight. It stopped bleeding but it still bleeds every once in a while.
Saturday I went to my brother's soccer game! Then we went out to dinner with some friends. I started eating chips and tortillas. Right before our food came out, I got so nauseous. I ate a little of my food, but I didn't eat much. We stayed at talked for a while after we were done eating and I felt so sick. I couldn't even look at any food. We finally left and I went home to rest...it was not fun at all! I randomly get nauseous like that and it's so weird.
Church was great yesterday! I'm so glad I got to go!! Today I will have to do an IV at home. I have been so bad about doing IVs. I am just really tired of them. I know that's not an excuse though. I'm supposed to do them every other day. I haven't been doing them that often and I'm definitely paying for it. I guess I'll start doing them as often as I'm supposed to.

Friday, March 5, 2010

Pain Management Appointment and Spring!

This has been a long week! Tuesday I was really sick all day from a migraine. I don't think I moved all day. I'm a little obsessed with the movie Elf. So on Tuesday I watched Elf and RV! It was exciting!
Wednesday I had a surprise doctor's appointment. Surprise as in finding out a few hours before the appointment. Let's just say I wasn't excited when I found out. We drove down to Children's Hospital and arrived at 3:02. Two minutes late. Not a big deal right? Well it didn't seem like a big deal until we grew old sitting and waiting for the doctors to come. I filled out the routine paper work in the waiting room. When I got called back the nurse took all my vitals. She put me in my room and asked if we wanted some water or coffee. We should have taken that as a hint as about how long we would wait. We waited and waited and waited for a long time. The posters in the room made no sense at all which was a bummer because those usually take up time. Thank goodness for wireless internet at the hospital! I spend some time playing Words with Friends...okay, I am SO obsessed with this game. It's okay because Scrabble helps you learn more words right? Good. I don't feel as bad now.
Finally there was a knock on the door and it was only one of my doctors. I see a pain management team which means a million doctors. Just kidding, only three hundred...minus the hundred. She came in with so much energy! Wow she wore me out! She's great though. She said they were switching to electronic files and they were three hours behind. No joke. She left us and told us everyone would come in soon. Soon meaning 45 minutes. They all came in and we caught them up on everything. (Is it really necessary to make us go through the same exact information that we filled out on the book of paperwork in the waiting room? Just go look it up! They end up reading the paper work to see what medicines I am on because there's no way I can pronounce them..)
Any way, we went through everything and I'm not sure what all we talked about. Sorry...once again I was not completely listening. But we did talk talk about what is causing my fast heart rate and heart muscles not to function right. The cardiologist was really thinking it was the sleep medicine (Amitriptyline) that the pain team put me on. We told him (cardiologist) that I had stopped taking the sleep medicine for two weeks and my heart was still fast. So yesterday we asked my pain management team if they thought it could be causing the heart problems. They said that the medicine can cause heart arrhythmia (heart skipping beats) but not tachycardia. I think we have now ruled out that it is not from my medicine. That means that the Lyme is probably causing it. We are now trying to figure out how to kill the Lyme to try to reverse the tachycardia and heart muscle problems. We aren't sure what we are going to do about it.
This weekend is Spring Visit at Oklahoma Christian so I get to go hang out there for a while! It's so pretty outside!!
I hope you have a great weekend!!!

Tuesday, March 2, 2010

My birthday!

I had a great birthday! Thursday my grandma took me to lunch and we went to a couple stores. I got a new Bible! It is a one of a kind Bible that looks antique. I'll post a picture sometime! I got a shirt and jewelry too! I was so exhausted after that shopping. I get tired so easily...
On Friday (my actual birthday) I hung out at home all day. Several friends and I got to go out to eat! We met and my house and then rode to Bricktown (downtown) together. It's so great being able to drive! We went to Zio's for dinner. The food is amazing! At the restaurant they don't sing happy birthday so my friends decided to sing it and our waiter clapped along! After dinner we came back to my house and hung out and watched a movie. I'm so glad that we all got to hang out!! It is great to do something "normal".
These are the flowers my parents gave me! I love flowers!



I love them all!
This weekend has been hard. I was hurting so much Friday and this whole weekend. I'm still having side effects from the beta blocker. For some reason the ride side of my back is hurting so much. It started Saturday and I was able to go to church Sunday but now it is so bad. I'm not sure why.
I think I'm halfway done wearing my heart monitor!! Yay!
There is A Way by Newworldson
"You say love is just a word, just four letters in a row.
Just a thing that people say, or they never tell you so.
And you use every excuse, to let nobody in.
Now this cloud you bring around, has become your only friend.

And everybody saying that it's going to go away, but it don't go.
And everybody's telling you one day it's going to change,
but you don't know, if it's really going to end.
But there is a way, there is a spark,
there is a hope that you can hold on to.
There is a lifeline come to the rescue,
just like a hand that's waiting for you.
And if you believe in this I promise that you won't be alone.
There is a way, the truth and the life, and the way.

But if love became a man, if the word had flesh and bone.
Would you recognize His face, if He came to bring you home.
You think you're all alone, gotta do it on your own riding solo.
Is there someone you can call, when you stumble and fall?
Cause you don't know, if you'll be getting up again.

There is a way, there is a spark,
there is a hope that you can hold on to.
There is a lifeline come to the rescue,
just like a hand that's waiting for you.
And if you believe in this I promise that you won't be alone.
There is a way, the truth and the life, and the way.

Don't you think your life's worth saving?
Don't you know that love's amazing?
Don't you want to lay your troubles down?
Lay them down.

If I thought love was just a word, I might feel the same way too.
But there's so much more than that, and it's waiting here for you.

There is a way, there is a spark,
there is a hope that you can hold on to.
There is a lifeline come to the rescue,
just like a hand that's waiting for you.
And if you believe in this I promise that you won't be alone.
There is a way,
there is a way,
there is a way."

Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me. John 14:6