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Tuesday, November 30, 2010

Hospital trip in pictures

I decided to document my hospital visit with some pictures. Might as well do something when you're stuck in a little room with no windows all night.

I can't figure out what show we were watching when I took this picture. It might be Hawaii Five-0

This machine is a baby warmer...I asked! Why it is in my room, I have no idea.
This was my view the whole time. Pretty exciting, huh?
I have an appointment with a doctor on Thursday to see what the plan is to take care of my cyst. Thanks for praying!!

update-3:30am after a trip to the hospital

Over the weekend the pain from my cyst was persistent. Yesterday, (Monday) the pain became even worse. I tried everything to ease the pain. I tried taking baths and i took pain medicine. Nothing worked. Around dinner time, the pain was so bad and i took my last pain pill. We didn't know what else to do besides go back to the hospital. So my dad and I went on our usual late night trip to the ER. The usual routine happened and they started an IV and gave me morphine that helped the pain. They sent me home with more pain medicine and today we are supposed to go back to my Primary care doctor. The morphine has made me so sick. I haven't been able to sleep yet but Im getting pretty tired and the nausea is a little better. I'll let you know what we find out at the doctor.

Monday, November 29, 2010

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!

Tuesday, November 23, 2010

I just love going to the doctor. Love it!

So maybe the title isn't true. But you sure would think I like it since I'm there all the time. Yesterday I woke up and there was a lump on the bottom of my foot. As the day went on, it got more painful and harder to walk. When I woke up today, the lump was bigger and discolored. It was a lot more painful and I can't walk on it. Since the doctors will be closed for the holiday, my parents decided to take me in today. The doctor was very nice! I had an
xray of my foot and it didn't really show anything. So she didnt really know what it was. It could be a cyst or something else. She gave me a prescription for an anti-inflammatory, as well as some inserts for my shoes. We also told her about my other cyst they found in the ER and how it's not really getting any better. She pressed on places on my stomach and I about screamed! It hurt so much! She scheduled an altrasound for a month from now to see how the cyst is doing. We're praying the anti-inflammatory helps the lump so I can walk again without trouble. One of the nurses at the doctor saw me and said,"you're here again?". I just laughed and said yes.

Monday, November 22, 2010

Oreo balls, sleepless nights, and a little more

Well I got to go to church last Wednesday! It was good to be there, but overwhelming. The energy level there is 10 times normal which is hard to deal with when you don't feel good.
Thursday night was very long. I slept for maybe an hour.
On Friday I got to go to senior lunch with the youth group and youth ministers! That is one of my favorite times of the week. It's so much fun! Then after lunch I went to see my friend at the hospital during her treatment. I headed home after that to rest. Later that night, I was able to go to dinner with another friend!
After dinner, I came home to a house full of people. We had a missions retreat this weekend at our house. The missions committee from church met at our house to discuss things. It was from 6:00-10:00 Friday night, then 9:00 Saturday morning until noon. We had lots of great food and I think it went well.
Again on Friday night I did not sleep hardly at all. Thankfully we had lots of coffee on Saturday for the retreat! Once the missions thing was over, I started to make Oreo balls for Sunday morning youth group class. I'll explain later what they were for!
Oreo Balls

Saturday afternoon/night we had thanksgiving with my dad's side of the family! It was good to get together with everyone.

We got home around 9:30 and I finished the Oreo balls. I then went upstairs thinking I would sleep since I was so exhausted. I was wrong. HGTV has saved my life. Last year when I didn't sleep for so long, I discovered that HGTV is the only channel that doesn't start the infomercials until 2am. Most channels start them earlier. Aren't you glad I enlightened you with that information? So I've watched house hunters until 2 am ever since Thursday.

It's amazing how spastic I am when I don't sleep. All through Saturday night, I just felt so spastic. Then before church Sunday morning, I drank lots of coffee and it worked for a while! I was oddly wide awake even though I had no sleep. So-about the Oreo balls. For class, 8 people made different finger foods. There were donuts, sausage balls, hamburger cupcakes, puppy chow, pigs in a blanket, cheese cake, little smokies, and chocolate covered pretzels. We had to make enough of our food for 30 people. The lesson was about how we are selfish. At the end of the lesson, Phil (youth minister) finally revealed to everyone what was covered up on the tables. No one besides the people who made the food knew what it was. In honor of thanksgiving, we had a "feast". Every person got to pick 1 think they wanted to eat. BUT there were some rules...
You could not get your own food. Someone had to ask you what you wanted, you could not tell someone to get you something. You could not get up if someone was getting your food. And you could not get food for the person who got your food. You couldn't eat until everyone at your table got their food. It was really fun and a special treat!!
I loved getting to go to church! I hadn't been in 3 weeks. My dad had to go to both services because he talked about missions and all the good things happening. For lunch I got to go eat with one of my friends! That was very fun!!
I went home to rest for a couple hours before I had to leave again. At 4, I went to the prayer meeting that the youth group has every week. It's such a wonderful time. Every week more people come. Yesterday we did something different than we have. Someone read a story from the Bible slowly, 3 different times. The first time, you are supposed to picture yourself in the story and what that would be like. The second time, you listen for 1 word or short phrase that God wants you to hear. After the second time, we shared what word stuck out to us. The third time, you listened to how God wants that word to affect you this week. After we heard it the third time, we shared how we can take that one word, and use it this week in our lives. This was the passage.
"As Jesus and his disciples were on their way, he came to a village where a woman named Martha opened her home to him. She had a sister called Mary, who sat at the Lord’s feet listening to what he said. But Martha was distracted by all the preparations that had to be made. She came to him and asked, “Lord, don’t you care that my sister has left me to do the work by myself? Tell her to help me!”
 “Martha, Martha,” the Lord answered, “you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.”
-Luke 10:38-42
I underlined the phrases that people said stuck out to them. In this passage, Martha is STILL preparing her home for Jesus, even when he is already there. How many times do we keep preparing for God to use us, and not focus on the present? He is already here and we are busy working for the future. The word listening stuck out to many people. We are so busy in life and don't take time to just listen. That's all God wants us to do. There is so much we learned from each other yesterday, just listening to each other talk about what stuck out and how we can apply it.
The forth step in this is to pray the word or phrase that stuck out to you, back to God and to continue to do that. It was such an encouraging time yesterday!
My brother Landon is in 6th grade. Every year, the 6th grade boys lead worship one Sunday night. Last night was that night! Landon led a prayer and did such a great job!! I'm pretty sure I could never get up in front of thousands and do that..all the boys did so good.

By the time church ended, I was feeling so bad. Once I got home, I got a migraine. Soon after that, I got so nauseous and my side started hurting a lot again from the cyst. It just suddenly got extremely worse. I cried for a long time until we could get the pain under control. I was on so much pain medicine. My vision was blurry and when I got up, I stumbled all over the place. It was a terrible feeling. It took quite a while to get the pain under control. I finally was able to go to sleep!!! I slept until 1am and was up for an hour or two but then went back to sleep. The pain is better today if I keep up with my pain meds. I had stopped taking them last week, which was a nice break from them!

 I hate that I have been on pain medicine more days than not for the past 3 months. I don't think I've gone a whole week without needing it for something. And I'm not someone who just takes it when there's a little pain. It's not worth the side effects. But I have needed them a lot. Hopefully it will all get better soon. 

As to why I've had trouble sleeping, we think it's just the Lyme. When my gallbladder started having problems, my Lyme doctor told us to stop treatments. He wanted me fully recovered before we started treatments again. Again, he stressed that for someone with an already complicated disease, removing an organ is a big deal and treatments would be way too much. So we just haven't started back on the treatments because several things keep coming up. Since we haven't attacked the Lyme in a long time, it's probably attacking and that's why I can't sleep. We are working on getting my medicine schedule so that I can start back up. Bodies can't heal without sleep. Also, did you know bodies can't heal when they are in pain? The immune system can't fight other things if you are in a lot of pain. I thought that was interesting.

I'm making another video about the past year because on December 3rd it will be 2 years since I was diagnosed and started treatment. So be looking for that! I hope you all have a wonderful thanksgiving!

"Give thanks to the Lord, for he is good; his love endures forever." 1 Chronicles 16:34



Tuesday, November 16, 2010

Not much to update!

I'm sorry for not updating more. There hasn't been anything to update really. I've just been hanging out at home having a blast! Well maybe not that last part, but I have been stuck at home. I did go on a car ride to Sonic the other day which was great!
I'm still having pain from the cyst and general tiredness. But it's not been too bad. I've tried getting off the pain medicine because you know how I really hate taking it, but the cyst is still causing too much pain. I haven't been sleeping well ever since coming home from the hospital. I don't know if it's the pain medicine or what.
This weekend a few of my friends including my cousin came to see me! That was so much fun. I was worn out after they left. Then on Saturday another one of my cousins came over while her parents were at a game! We played on the wii and she did my hair and make-up. It was fun.
Last night my family and I went to my grandparent's house up the street to see my great-grandma(dad's grandma)! She will be here for a few weeks which will be great!
Tonight is the high school Bible study with the youth group so I'm going to try and go to that. Usually it's a small group which shouldn't be too overwhelming. It's hard going from not leaving the house for weeks, to somewhere with so many people with lots of energy.
I will try to start updating more!

Wednesday, November 10, 2010

Another hospital bracelet to add to my collection

On Sunday, my brother was sick too so my mom stayed home with us from church. It was actually fun because we had no where to go and had some shows to watch! My dad was still gone to Honduras and Guatemala.
Landon was still sick on Monday so he stayed home from school. We started getting ready for my dad to come home that day. His plane was scheduled to get in at 2:30 in the afternoon. The plan was for my mom to pick up my dad from the airport, then bring him home, then take Landon to the doctor because they thought he had strep.
My mom was planning to leave at about 2:15 and my brother was going to go with her. I really wanted to go but I just felt too sick. A little before 2, my lower back started to hurt a little. All of the sudden, my lower right side, lower back, and lower right part of my stomach started hurting so much. I was laying in the living room so I got up and ran upstairs to take a bath. I've never had anything happen like that before. The pain was worse than my gallbladder pain, which we didn't think was possible. I took some pain medicine but it did nothing to relieve the pain. I couldn't breathe because the pain was so bad. Nausea hit with the pain and I thought I was going to be sick. I was upstairs so I texted my mom and told her that she was going to have to take me in if the pain didn't stop. At that time, I decided that I couldn't even handle taking a bath. I ran downstairs, at this point delirious. I honestly thought that I was going to die. I was shaking and crying. My mom called my grandma to come over immediately. She also called my primary care doctor and asked if we should go there or the hospital. They said go to the hospital right then because they thought it was my appendix. I think my grandma was speeding on the way to my house because she got here fast! She stayed at my house with Landon since he was sick and couldn't go to the hospital.
On the way to the hospital, my mom texted my dad and told him what was going on. Thankfully, he was with people from church, so they were able to take him to the church and my grandma and Landon picked him up there.
We got to the hospital around 2:30 I think. They took my vitals in triage and said it shouldn't be too long. My heart rate kept going from 140-160 bpm and my blood pressure was low. I don't know why my blood pressure was low since I was in so much pain. But the high heart rate showed how much pain I was in. I also still had a low grade fever. We sat in the waiting room for so long. Probably over an hour. I was so angry because it didn't look crowded. Did they forget that I was hurting and it could be my appendix? What if it ruptured right there in the waiting room and they didn't even know? I looked down and I was wearing a shirt that said love God, love people. I really was not loving those people who were taking so long. The director of the emergency room came out and had me do a test to hopefully speed up the waiting time once we were in my room. They finally took me to a room and we waited some more. The doctor came in and asked why i was there and ordered some tests. He also wanted a CT scan. A while later, the director of the ER came in again to see how things were going. She was very sweet. She said that they had several unexpected ambulances come in which is why it was taking so long. They even had people on stretchers in the hall because they ran out of rooms.
The nurse came in to get blood tests. At first they were not even going to start an IV, but they saw how much pain I was in and decided they needed to give me pain medicine. We didn't tell them that I had a port because usually they say they can't use a port. So that means they have to find a vein. She tried twice, and said she had to get another nurse because they are only allowed to try two times. That's when we told her that I had a port. She said that she loves using ports! The reason some people can't use them, is because you have to be an RN. If you are an LPN, you can't access ports. We asked why that is, and they said that accessing a port is looked at as a procedure because it's very invasive. LPNs don't have as much training so they can't do it. That explains why some people say they can't access my port.
I really didn't want my port accessed because I don't like random people doing it. Some people don't hold the port while they put the needle in, so the port moves around and it is very uncomfortable. It's not something that I feel comfortable with just anyone doing. The nurses understood that.
Three more nurses came in to look at my veins. One of them tried in my hand and got it! Third time's the charm. For some reason, they didn't hook me up to IV fluids even though they said that I was dehydrated. They took the blood they needed and she went to get the pain and nausea medicine. I could not wait. The pain was still intense and had been for a couple hours now. She put the nausea medicine in first, then the morphine.
Right after she put the morphine in, the pain got three times worse, my mom said my face turned bright red, I got out of breath, and I got so hot and started sweating. I began throwing myself side to side, trying to help the pain. I was crying and groaning, almost screaming. The nurse didn't know what to do. She ran to tell the doctor and they decided to give me another dose of morphine. Since my pain was so bad, we thought it would just take several doses to break through. The nurse gave me the second dose of morphine and the pain got even worse, and the same thing happened again. The pain was unbelievable and no one knew what to do. I was going from side to side because I didn't know what to do! They called the doctor and nurses in my room. They got cold washcloths and put on my head to try and cool me down. They decided to switch pain medicines. I was given a dose of Toradol. They said it would take 15-20 minutes for it to work. They said they had never seen that happen before.
I was so thirsty from the episodes but I wasn't allowed to eat or drink in case I had to have surgery. That was frustrating.
Sometime during those episodes, the doctor came in and said they ruled out that it was my appendix. They also ruled kidney stones or infection. He said that he wanted an ultrasound instead of a CT scan now that he had ruled those things out.
Ultrasound came and got me and took me to another part of the hospital. The nurse was so nice. She did my gallbladder ultrasound so we already knew her. The Toradol started kicking in during the ultrasound! We were in ultrasound for over an hour. My dad arrived at the hospital while we were in ultrasound. They took me back to my room once we were done. We got to my room at 8 or so which means that there were new doctors and nurses. They had a shift change at 7. A while later, the new doctor (which we've had before and have had problems with) came in. I think he remembered us because he didn't make eye contact and was in and out very fast. He said they found a cyst on the ultrasound. They would send me home with pain medicine and I was supposed to see another new doctor to get medicine so that I won't get anymore cysts.
The pain was already returning so when the new nurse came in we asked for another dose. The Toradol is not a narcotic, it's a very strong anti-inflammatory. The nurse said no, your chart is already closed so we can't do that. We could not believe that! How hard is it to scan my bracelet and open my chart back up? So I didn't get another dose and they sent me home.
We got home around 9 or 10 that night I think. It was a very long ER trip. They sent me home with Loritab to help with the pain.
The pain has been better. It's not terrible, but it hurts when I'm up. The pain medicine helps for the most part. I'm just taking it easy and resting. My mom stayed home with me yesterday, but today I'm on my own.
Once when I was in Children's hospital for Lyme pain, they gave me Toradol and I had the same reaction that I did with the morphine. They gave me morphine and it helped the pain. On Monday, it was the opposite. Morphine made the pain worse, and Toradol made it better! I guess it depends on what kind of pain I have.
Thank you all for your prayers! It's amazing how fast things can change and how fast pain can hit

Saturday, November 6, 2010

Fever fever go away, I want to have some fun today

I love changing the words to rain rain go away and getting it stuck in your head! You're welcome.

I haven't updated because I've not been feeling very well. On Wednesday I went and ate lunch with some of my friends at Chick fil a and came home and started not feeling well. I didn't feel terrible, I just could tell I was getting sick. So I didn't go to church. Thursday morning I was positive I was getting sick because I really struggled to make it up the stairs. Thursday night I went to see the musical at OC and it was great! I probably shouldn't have gone since I was getting sick, but I really wanted to go. I think I really over did it. I have problems with doing too much because I feel horrible canceling plans.

So yesterday I woke up feeling terrible. I feel like I have a cold with body aches and fever. All I've done is laid in the living room. I thought I would sleep well last night because of the fatigue but I sure didn't...I was up a lot of the night with chills and fever. I would fall asleep for 10 or 20 minutes at a time and have nightmares every time. And they were horrible nightmares.

This weekend is homecoming at Oklahoma Christian University and I had a lot of plans! I hate having to cancel things so much...

Today I feel about the same. Apparently a lot of people have this and my mom is having head and fatigue problems too. My dad gets back from Guatemala and Honduras on Monday! We are ready for him to be home! Several of my friends who have Lyme are in the hospital so I guess it's been a bad week for everyone. Sorry for the short update, hopefully I'll start feeling better soon!

 "Praise be to the Lord, to God our Savior,
   who daily bears our burdens.
Our God is a God who saves!" Psalm68:19-20

Tuesday, November 2, 2010

the Voice of Truth

I can't believe that it is November! My dad has been gone to Honduras with the preacher from our church since Saturday! They are also going to Guatemala tomorrow I think and won't be home until next Monday.
Last week, my homebound teacher came and we went over the plan. I'm doing one subject at a time because it's really overwhelming to try and do all of them at once. Last Tuesday I started US History and yesterday I finished the whole class!! I did 31 chapters in 6 days. I have to say that I'm very proud of that. I worked very hard!
In this world, there are so many lies and statistics that we listen to. So many things keep us back from living our life to full. Lies tell us that we can't do something. Statistics tell us that we don't have a chance. But God tells us that that we can do it and that everything is for His glory. That is so reassuring. I love the chorus of this song.
But the Voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth
This song talks about all the voices telling us we can't do it. But we should listen to the only true voice, which is Christ.
The Voice of Truth by Casting Crowns
Oh,what I would do to have
the kind of faith it takes
To climb out of this boat I'm in
Onto the crashing waves
To step out of my comfort zone
Into the realm of the unknown
Where Jesus is,
And he's holding out his hand
But the waves are calling out my name
and they laugh at me
Reminding me of all the times
I've tried before and failed
The waves they keep on telling me
time and time again
"Boy, you'll never win,
You you'll never win
But the Voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth
Oh, what I would do
to have the kind of strength it takes
To stand before a giant
with just a sling and a stone
Surrounded by the sound
of a thousand warriors
shaking in their armor
Wishing they'd have had the strength to stand
But the giant's calling out
my name and he laughs at me
Reminding me of all the times
I've tried before and failed
The giant keeps on telling me
time and time again
"Boy you'll never win,
you'll never win."
But the voice of truth tells me a different story
the Voice of truth says "do not be afraid!"
and the Voice of truth says "this is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth
But the stone was just the right size
to put the giant on the ground
and the waves they don't seem so high
from on top of them looking down
I will soar with the wings of eagles
when I stop and listen to the sound of Jesus
singing over me
But the Voice of truth tells me a different story
The Voice of truth says "do not be afraid!"
And the Voice of truth says "this is for my glory"
Out of all the voices calling out to me (calling out to me)
I will choose to listen and believe (I will choose to listen and believe)
I will choose to listen and believe the Voice of truth
I will listen and believe
I will listen and believe the Voice of truth
I will listen and believe
'Cause Jesus you are the Voice of truth
And I will listen to you.. oh you are the Voice of truth