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Monday, January 31, 2011

Some pictures!

Here's a couple more pictures of my last ER trip. You're probably wondering why we take pictures in the hospital, especially when I go twice a week like this past week. What else are we going to do when there's nothing to do besides taking a million pictures of each and every room. Plus, this way it'll jog my memory since there's some things I don't remember because of the medicine they give me. And of course we take them just so you can see too :)

This was before all the medicine. I was not feeling good at all, as you can tell from the no smile.
Feeling better!


Our back yard on Saturday. Almost 80 degrees. They're still saying tonight and tomorrow we are going to get 10-14 inches of snow with at least -10 degree temps. Schools are pretty much closed tomorrow. It should be crazy!! I'll post pictures!

Sunday, January 30, 2011

Another ruptured cyst

On Wednesday I had an ultrasound to see if there were anymore cysts. They found one, but said it was small. On Thursday night, the pain got worse and I got lightheaded and dizzy. We knew something was wrong. Off we went to the ER again. It was packed with people and we waited in the waiting room for 2 or more hours. Too bad there were no entertaining people there this time. We finally got taken back to a room. I'm lucky I even got a room because there were gurneys lining the halls with people. I got put in this room with tile everywhere, a door leading to the outside, and a shower on the wall by the bed. It was a little creepy. The nurse said it is the room they use for chemical spills and they can open the door to air out the ER.

The doctor was great. She used to work as an OB nurse and even had some of the same problems I'm having. She didn't think we needed any tests besides blood work since I had just had an ultrasound. She is pretty sure that the small cyst ruptured on Thursday, causing the extra pain and dizziness. We spend a lot of time talking to her about things, and she was in my room for a long time! So she gave me a couple syringes of medicine and sent me home. I started the medicine to help stop things and make sure the cysts don't come back.


Here is the room I was in. It was very weird. This is after I started feeling better and was fixing to go home.
Since being home, I'm feeling good. On Friday night, I did get sick several times, but it might just be from my body adjusting to the new medicine that I started taking Thursday. I'm still taking strong pain medicine because of the abdominal and back pain. The pain usually stays under control with that, it only gets bad when it's almost time for the next dose. It's not very bad though!

The weather was in the 70s on Friday and yesterday, so we sat on our back porch all day both days. There's supposed to be a major snow and ice storm on Tuesday. You would think the world was ending the way everyone acts. The stores are filled with people and are out of everything. The weather men are having the best time of their lives getting to be dramatic and everything. There's already a winter weather advisory. Welcome to Oklahoma.

The past few days I have had these itchy bumps start popping up all over me. Yesterday they started getting worse. We are trying to figure out what they are. They aren't hives or anything like that. We thought they were the chicken pox, but we aren't positive. They are driving me crazy! More keep popping up.

Well I better go prepare for the end of the world snow storm.

Thursday, January 27, 2011

second night in the ER this week

I'll update tomorrow but things got worse so Im back in the ER.
Things are about the same today. I wish I could say it's better, but it's not. I've been sleeping about 12-14 hours at night and I'm still so exhausted. All the pain medicine makes me pretty groggy too. Yesterday my stomach started swelling up, most likely from all the fluid and blood in my abdomen and pelvis. It's still very swollen. I took a shower today which felt really good since I hadn't showered in a while from just being too sick. I take multiple baths a day to see if that will help with the pain. Sometimes it does, sometimes it makes it worse. I'm still not okay will the "wait and see" thing that's going on, but I honestly don't know what to do about that. How can they tell me to wait for 2 weeks, when they don't know how much it hurts and how sick I feel? I don't ever want anyone to know how this feels, but I wish someone would listen and do something about it instead of sending me home. I'm trying to be tough but i'm so tired of this terrible pain! It seems like everyday it hurts a little more, but there's nothing I can do about it. I keep wanting to take myself to the ER but I don't think that will happen. I just need relief soon. Please keep praying.
Here's a song by Steven Curtis Chapman and then some Bible verses.
"This is not how it should be
This is not how it could be
But this is how it is, and our God is in control
This is not how it will be When we finally will see We'll see with our own eyes, He was always in control
And we'll sing holy, holy, holy is our God And we will finally really understand what it means
So we'll sing holy, holy, holy is our God, while we're waiting for that day
This is not where we planned to be
When we started this journey
But this is where we are And our God is in control
Though this first taste is bitter There will be sweetness forever
When we finally taste and see That our God is in control
And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God While we're waiting for that day We're waiting for that day We'll keep on waiting for that day
And we will rise
Holy, Holy, Holy
Our God is in control"
"Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls, yet I will rejoice in the Lord,
I will be joyful in God my Savior." Habakkuk 3:17-18
"The Lord is good,
a refuge in times of trouble.
He cares for those who trust in him" Nahum 1:7
"When you pass through the waters,
I will be with you;
and when you pass through the rivers,
They will not sweep over you.
When you walk through the fire,
You will not be burned;
The flames will not set you ablaze." Isaiah 43:2

Wednesday, January 26, 2011

Update 1/26/11

I forgot to mention that last week we decided that there's no way I can graduate. My mom has to go up to the school and sign papers to remove me. I'll just have to get my GED. With 2 major surgeries and 6 weeks of recovery for both, so many ER visits, hospitalizations, and just being sick this semester, I just can't finish school. I'll post about it later.
Monday I had an appointment with the gynecologist. We thought I was going to start the injections (Lupron) that would shut everything down, but he doesn't want to do that anymore. He said that that will take too long to start working. Right after surgery, I had asked his nurse if by waiting this long, it would give the cysts and endometriosis a chance to come back, and she said no. Well obviously she was wrong. I can't believe this is happening again. The ruptured cyst makes my legs, abdomen, and back hurt. He said I have fever because of the internal bleeding and inflammation. So I feel extremely terrible. We asked how long it will take for the pain to get better and for the internal bleeding to go away and he said two weeks. I don't understand how with my surgery, he said that he would have done emergency surgery even if I would have just had one of the problems I did (which a ruptured cyst was one of them), and now he tells me to just wait and deal with it. I'm on SO much pain medicine, and it doesn't help. Between Percocet, Loritab, and a strong anti-inflammatory, you would think that I would not be in pain, but that's not the case. I cry a lot of the day because I hurt so much. And it's not like I'm a wimp who can't handle pain. I have such a high pain tolerance, even the surgeon said that after my surgery. I've thought about taking myself to the ER again multiple times a day and demand to be admitted. I haven't really eaten since Friday night because I'm nauseous and I just feel too bad. I eat a little here and there but not much.
So today I had an ultrasound. I really don't know why, I just know that it hurt a lot. And of course insurance wouldn't cover it, so we had to pay full price.
What is the plan now? I have no idea. I guess just trying to keep me comfortable. I'm sure it will get better soon. If not, surgery is sounding really good about now because at least there would be an end in sight. Last time I checked, internal bleeding was NOT a good thing and there was no "let's just wait and see". It was an emergency situation and needed attention IMMEDIATELY. I just don't understand why I'm allowed to lay here and cry in pain from internal bleeding and be told to wait it out. My stomach and pelvis are full of fluid and blood, that doesn't seem okay to me. It doesn't make sense.
We'll see how the next few days go.

Another night in the ER

On Friday, I got to go to senior lunch with my youth ministers and friends! I was feeling pretty good. That night, my friend came over and we were watching tv and all of the sudden my lower back and abdomen started hurting so much. My thighs also hurt. It was the same pain that I had before surgery. The same exact pain. I took some pain medicine and it did nothing. Somehow I made it through the night and woke up Saturday with the same pain. On Saturday all I could do was lay down. As the day went on, the pain got worse. Through out the day, I took 3 different pain medicines, but none were even touching the pain. I cried most of the day because I was hurting so much. I also was nauseous and didn't eat all day.

About 9pm we finally decided to go to the hospital. My mom stayed home with my brother so it was just me and my dad. When I arrived at the ER, I was put in a wheelchair and taken to triage. My blood pressure and heart rate were high, and I had fever. After that we were sent into the waiting room. To our surprise, the waiting room wasn't extremely full. We waited for a while and then were taken into another triage room off the waiting room to start an IV and take blood. It was the same 2 nurses that have been there every other time we have come. They remembered us and we started talking about my history and Lyme. We got to talk for a while because I was so dehydrated so they couldn't find my veins. The nurse tried one spot on my arm and literally dug around for it for 3 minutes. She gave up on that spot and got it in my wrist. Somehow we got to talking about how doctors here say Lyme doesn't exist and about all the trouble we've had. The nurses mouth dropped to the floor. She said, "how stupid can they be? Of course you can get Lyme here! What idiots!". She was so shocked and angry about all the problems we have had. It was so nice to have another nurse agree with us about how stupid it is that doctors say it doesn't exist here. It's common sense people! We have deer and ticks. That's all you need. She got so upset and mad that this is happening.

Anyway, they finally got my IV in and took blood. They don't hook you up to anything yet since you go back to the waiting room, they just get the line in so they don't have to do that once you get called back. The nurse told us that I might have a kidney stone because of the fever and my history. She said kidney stones after surgery are very common. We were sent back to the waiting room. Usually if you need a CT scan, you are taken from the waiting room up to CT then either back to the waiting room or your room if it's ready. This time I got to go to my room first which was so much better! We were only in the waiting room for about an hour which isn't bad!

They took me to my room and it was the same room I was in when I was admitted to the hospital. It's weird how I always get put in the same rooms. I got changed into my adorable hospital gown while we waited for the doctor. He came in and pressed on a few places on my stomach, which hurt a lot. We gave him my history and he did not try to tell me that I don't have Lyme. This hospital is great! I'm still wondering why we never went to that hospital before my gall bladder problems. For a year and a half we went to Children's Hospital and another smaller hospital, and honestly it was torture. Everytime we went, I would be scared to death because I knew I would get yelled at and told that everything is in my head. But this hospital is different. I love it so much!

So the doctor said he suspected it was another cyst, just from looking at my history. He got some IV fluids started and gave me pain and nausea medicine. We waited for a while and then transport came to take me to CT. I was so dehydrated that my body took in a whole bag of IV fluids in 30-45 minutes. I was done with my fluids by the time I went to CT. So they rolled my bed up to the CT room and injected the dye into my IV and did the scans. It only took about 20 minutes. Have you ever had the IV dye before? I love what they always start by telling you. "The dye will make you feel warm and it will feel like you're peeing on the table, but don't worry, you aren't." Haha thanks for warning me. It's a very odd feeling!

He put the dye in, and then I felt so sick. I really thought I was going to pass out. I guess I had a reaction to the dye because I've never had that happen before and I've had 3 or 4 CT scans in the past 2 months. When my dad came back in the room, he said I was so pale.

Once I was done with that, I was rolled back to my room to wait for the results. I received more pain and nausea medicine because the pain had already come back. It's sneaky like that. One minute you think you've escaped the pain for a while and then it hits as hard as ever. Sometime while I was there, the nurse gave me a dose of Dilauded and it didn't help at all, so I had to immediately get another dose. That's how persistent the pain is.

I was not allowed to eat or drink while I was there in case I had to have surgery. Pain medicine makes your mouth so very dry, especially IV pain medicine. I asked if I could have ice cubes, but I could not, so I was given this sponge on a stick. The nurse puts water on it, and then you can rub it around in your mouth and suck on it...it was the best thing ever! Not really, but I was desperate. Here's a picture of it.


Finally, the doctors gathered in my room with the results of the CT scan. The scans showed that I have internal bleeding again in my abdomen and pelvis. Looking at my history, they said that I most likely had a cyst that ruptured, and that's what is causing the internal bleeding. No wonder I hurt so much!! I was already scheduled to see my gynecologist on Monday, so they felt comfortable sending me home.

When I was done with that little sponge on a stick, my dad asked if I wanted to keep it and I said, "well of course!" and he thought I was serious. He put it in my purse and I freaked out and said, "I was just kidding! Why would I want to keep that?!". It was pretty funny! Guess you had to be there...

As soon as I got up to change out of my hospital gown, I was hit with nausea. IV pain medicine makes you so sick, especially if you've had 5 doses. You're fine until you lift your head or move, and then the nausea strikes. It's terrible! I made it to the bathroom and changed and then had to wait for transport to bring a wheelchair since I was a little drugged and couldn't really walk. The nurse gave me 3 barf bags to take with me. I guess I really did look so sick.

We got home at 3am I think and I was so excited to be able to go to sleep in my own bed. I went upstairs and then got sick. I had nothing in my stomach since I hadn't really eaten all day, so I was dry heaving. This happened every hour all night. Finally, around 8am I stopped getting sick and feel asleep, and I slept until noon. It was a hard weekend.
I don't know if you can tell but I'm holding that awesome sponge on a stick. Haha

Monday, January 24, 2011

Lyme Disease in Oklahoma

I'm working on an update to post. I had to go to the hosptial on Saturday night and I'm really sick but I'll try and post soon.
This weekend we saw that the Oklahoma State Department of Health changed their info about Lyme Disease. They just hired a new director, so maybe this will change things. You can read the article here.
This is what my dad said about it on facebook.
"Great news! After years of fighting with doctors and health "professionals" about our daughter's diagnosis of Lyme Disease because "it doesn't exist in Oklahoma," the OSDH now says it does! Docs who treat late stage Lyme have been run out of practice and out of Oklahoma - so we STILL have to leave the state to get care from experienced, knowledgable Lyme docs. But this is a victory for those suffering this terrible disease!"
In the article it says, "However, other evidence suggests that it could be possible to get Lyme disease in Oklahoma".
They are starting to see the light! So now, if any doctor here tells me that it's in my head and that I can't have Lyme, we can show them this article and they can't deny me. I want to go to all the doctors who have been so rude to me and just show them this. Maybe all we're doing to bring awareness is actually getting somewhere.

Friday, January 21, 2011

Winterfest, part 2

"And so, dear brothers and sisters, I plead with you to give your bodies to God because of all he has done for you. Let them be a living and holy sacrifice—the kind he will find acceptable. This is truly the way to worship him." Romans 12:1 (NLT)
On Saturday morning, we headed to the conference center for worship and a lesson. This missionary came and told us this amazing story that happened to him in New Zealand. He told us how to talk to people who don't believe in God. It was incredible!! I wish I could explain it all on here, but I can't.
At noon, the sessions break for lunch, so we went to a mall we always go to. My friends and I ate the Rainforest Cafe and then walked around. We left the mall at 3 and went back to the hotel for free time. The hotel we stay in has an atrium in the middle and all the rooms open to that. It's so much fun because the whole hotel is full of people at Winterfest, so there's so much entertainment! We like to just sit outside our room and people watch. We ate dinner, then went back to the conference center for the evening sessions.
Saturday night is always so great. The lessons are always so practical, but deep and challenging. We were shown how much time we spend doing things. We spend so much time watching tv, sleeping, facebooking, and even getting dressed and going to the bathroom. But how much time do we spend with the Creater of the earth? It's not very much. On stage, there was a huge container with pennies in it. There were 86,400 pennies. That represented how many seconds we have in each day. What would it cost us to follow Christ? Is it worth it? Yes, it is. On Friday night, we SAW that God is worth it. He is so mighty! The speaker took a handful of pennies and threw one by one on the floor as each second went by. That's how fast it goes. We never get that back. As we continued worshiping, we were asked to get out our pennies, quarters, dimes, or nickles, and take them to the stage. This represented us giving our time to God. It was so moving to see people with handfuls of change, trying to get through the crowds, bringing it all to God. There were groups of people praying with each other, people worshiping on their knees, and tears running down on everyone's faces.
One of the main points was that God is worthy of our praise, NOT just at church when we sing, but every second. You don't have to cancel everything in your life to worship God. You just have to put Him in everything, in every second of your life. That is what God calls us to.
At the hotel that night, 2 teens decided to accept Christ in baptism. One from our church, one from another. As we all gathered in the pool room, we sang praises as we saw our new sisters in Christ being baptized. It was so exciting and joyful!
Sunday morning was also very moving. All weekend we kept seeing the number 31,536,000 but we never knew what it was. They finally told us that that is how many seconds we have in a year. God is worthy of our praise 31,536,000 seconds a year. They pulled all the pennies out of the container on stage, and underneath was a cross.
"Worship is 31,536,000"
We repeated this phrase over and over.
"Worship is not how you sing, but how you obey"
Worship is not how you sing, but how you live your life. Yes, we can worship God at church when we sing, but we can also worship him in everything we do.
This was the main verse for the weekend. Here's 2 different translations.
"Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship." Romans 12:1 (NIV)
"So here's what I want you to do, God helping you: Take your everyday, ordinary life—your sleeping, eating, going-to-work, and walking-around life—and place it before God as an offering. Embracing what God does for you is the best thing you can do for him. Don't become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You'll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you." Romans 12:1-2 (the Message)

Tuesday, January 18, 2011

Winterfest 2011, part 1

I had such a good weekend! Over the next few days, I will write about everything that happened at Winterfest. There's too much to write in one post!

The theme this year was Worthy. We left the church at 3pm and arrived in Arlington, Texas at 8pm. Winterfest is a youth conference held at the convention center in Arlington. I think there are around 6,000 people there.

On Friday night, we started with worship. Six thousand people lifting their voices without instruments is incredible. We then listened to James Waugh talk about how God is worthy of our praise. It was a great lesson! He showed us the stars and how far away they are. He showed us how our galaxy is just one of millions. He showed us how small we really are, and how big our God really is. We saw several videos that showed us again, how big everything is that God created.

We read this verse several times.

"The heavens delare the glory of God; the skies proclaim the work of his hands.
Day after day they pour forth speech;
night after night they reveal knowledge.
They have no speech, they use no words;
no sound is heard from them.
Yet their voice goes out into all the earth,
their words to the ends of the world." Psalm 19:1-4a

We talked about our DNA and how mind blowing that really is. We each have our own DNA. No one that has ever lived, or will live, has the same DNA as us. We each were given a thimble. We were then told how many people's DNA would actually fit in that thimble. I don't remember the number because it was such a big number. We were shown how tiny every red blood cell, platelet, and everything in our body is. It's so complex and amazing. We saw how small an embryo is, and the miracle of that.

We read verses about how special we are to God, because He created each of us unique, and knew us before we were even created.

"For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts, God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you." Psalm 139:13-18
During the lesson, we heard the story of this man's twin daughters. He and his wife had twin baby girls who were healthy. They took them home from the hospital, and 10 days later, the babies got very sick. They were admitted to the hospital and MRIs and CAT scans showed that both of the babies had brain damage. We were shown their scans of their brains and everywhere was white. White represented brain damage. They were told to cherish the time they had with babies in the hospital because they would never bring them home. Everyone they knew started praying for healing. 
The dad was at Winterfest, and reenacted a conversation that he had with the speaker at the hospital, shortly after they were told the news. They pretended like they were in the waiting room at the hospital. They went back and forth, saying they don't understand. The dad was angry. How could this happen to his innocent daughters? They prayed together. We saw the raw emotion of that time.
Everyone had tears in the eyes. It was so sad. The speaker finished telling the story. The family was told to prepare for the worst. The dad wanted just one more MRI. The doctors finally agreed. On the screen, we saw the MRIs that the dad pushed for. There was no white anywhere, there was no brain damage. The doctors were shocked, this was medically impossible. They got to leave the hospital with their girls shortly after! How does brain damage just disappear? The only way is that our God healed them. We then saw pictures of the girls today, as healthy as can be. It was so incredible! Our God is a God who heals.
So on Friday night, we SAW that God is worthy of our praise!
We got to the hotel at 11pm and had a short devo. We all finally quiteted down, and everyone went to bed around 2am. I of course could not sleep. I slept from 4-5 so that's better than nothing!
Here are a few pictures. These were actually taken at the mall we went to on Saturday afternoon.
Rachel, Alex, me, Natalie
Dustee and I with Rachel and Alex creeping in the back ground! Haha
Alex and I
Rachel and I
To be continued...

Wednesday, January 12, 2011

Phone conference with Lyme doctor and Make A Wish

Last night, my mom talked to my Lyme doctor in Nevada for quite a while. We hadn't talked to him for a while, so there was a lot to discuss. He didn't know about my hospitalization and surgery last month. He was very shocked when my mom told him about everything, but so relieved that it's taken care of. As soon as he knew what happened, he immediately asked what my doctor (gynecologist) is going to do to prevent it. He said that he would put me on Lupron, which is EXACTLY what the gynecologist wants to put me on. He was very impressed with everything the gynecologist has done. So, I have an appointment with the gynecologist in a couple of weeks to start the injections.
He said that one of the first things that they all learn in medical school is to never rely on just test results. Sadly, most doctors forgot that. Thankfully, my Lyme doctor and gynecologist have not forgotten that! My gynecologist had a feeling that something was seriously wrong with me, even though the CT scan and blood work were normal. He went with his instinct and he was so right! My Lyme doctor was very impressed, since most doctors wouldn't do that. He was also impressed that the gynecologist wanted us to talk to HIM before putting me on any medicine.
After my gallbladder surgery, I had some kind of viral colon infection. My Lyme doctor thinks that that could have contributed to all of the problems I had. He said that in women, colon infections can cause ovarian cysts and other problems. He also said the Lyme contributed also. Did you know most of your immune system is in your gut? He said that healthy people with good immune systems would be able to have fought off the colon infection and it wouldn't have caused problems. This shows him that my immune system is very weak. The gallbladder problems and cysts, appendicitis, and endometriosis could have been there for several months without showing any signs, compromising my immune system even more. Because of this, I really need to go to Nevada to strengthen my immune system. As soon as I'm fully recovered from surgery, I have to start back on the butt shot (aka most painful shot that exists. Grown men pass out from it.) to help my immune system fight any viruses and bacteria that I have.
He also said that I qualify for Make A Wish, so he is starting the whole referral process!
This is a quick description of what Make A Wish is from their website.
"The purpose of the Make-A-Wish Foundation is to grant the wishes of children ages 2 ½ to 18 years old who have been diagnosed with a life-threatening medical condition (i.e. a progressive, degenerative or malignant medical condition that has placed the child’s life in jeopardy)."
Here is their website. They are such a great foundation that brings joy to so many kids lives!!!
http://www.wish.org/about
I didn't walk today or do any exercises because I have a migraine that's making my body and throat ache too. I didn't sleep very well so I could tell that I was getting a migraine. It's better this afternoon since I took some medicine, but I'm just very tired and worn out. I need to rest up because Winterfest is in 2 days! I'm so excited!!!!

Tuesday, January 11, 2011

1.6, Winterfest, Steroids

This post is so random, just so you know.
As you know, I started a steroid pack to clear up my hives around my incisions. That didn't go so well. All weekend, I was angry and upset with everything and everyone. But I honestly couldn't control it. Saturday night I broke down because I was so frustrated that I was so angry and I couldn't control it. I also couldn't handle pain. I have a very high pain tolerance, so even though my abdomen where I had surgery still hurts, I'm mostly off pain medicine. I do have to take Ibuprofen and Tramadol sometimes. But on Saturday, I could not handle it. So I took some medicine and that helped. My mom told me to stop taking the steroids.  Thankfully, my rash is mostly better, and I can continue using the steroid cream. I continued to have the steroid side effects Sunday, but I think now they have stopped. My body just can't handle steroids for whatever reason.
I just walked 1.6 miles in 10 minutes! Yesterday I walked 1.7 miles. Have you all used the Wii Fit? It's really fun and helpful! Everyday, it weighs you, tells you your BMI, and shows you how your balance is. Then, you can do exercises to help accomplish different things.
I've lost a lot of strength during recovery from surgery, and from the past 2-3 years since I got sick. I really need to build it back up. For such a long time, I wasn't allowed to do any physical activity because of my heart problems. I haven't done anything since then.
I'm starting slow, since I am still recovering from surgery. I've been working on my balance, and walking everyday. I didn't do anything on Saturday and Sunday because my abdomen, where I had surgery, was hurting a lot.
One of the reasons I started building up my strength this week is because Winterfest is this weekend! If you don't know what that is, you can read my post about last years Winterfest here. I am planning to go, and can't wait!!
This weekend I got to sleep in my room again!! Although the stairs are still a mountain that stabs me with knives in my stomach, it's been great.
I also got to go to church on Sunday! I didn't go to class Sunday morning, just worship, but I did get to go to our prayer meeting and church Sunday night!
This week I am going to rest and not really go anywhere so that I can be ready for Winterfest!
Tonight, we have a phone conference with my Lyme doctor. We have lots of things to discuss. I'll update tonight or tomorrow with everything we talk about and find out.
Hope you are having a great day!

Thursday, January 6, 2011

Update after appointment

We just got back from my appointment with the surgeon. We actually didn't see the surgeon because he is out of town, but we saw one of the other doctors who was in my surgery too. She was very nice!
She looked at my incisions and hives and said that the incisions are healing well! They don't look infected or anything so that's really good! She said I could be allergic to the stitches so that's what could be causing the hives. So she put me on a steroid pack to clear it up and gave me some steroid cream. Hopefully it will help soon.
To get the cysts and endometriosis under control, we are going to having to shut everything down. She said that I had lots of internal bleeding in my pelvis and abdomen from the endometriosis and cysts, so we really need to stop that. To shut it down, I will get a series of injections.
But, before we start that, they want us to check with my Lyme doctor to make sure that is okay. You mean they actually believe I have Lyme and want us to consult with my doctor?! Yes! We love them there! They have never, ever questioned us. So my mom is talking to my Lyme doctor next week. If he approves of it, we'll go back in to my surgeon and go over everything that will happen and then start it. They said that the side effects (hot flashes, irritability, hard time sleeping) are what's hardest for young girls my age. It will be a hard adjustment, but it will be worth it. We don't want anymore surgeries.
The concerning thing has to do with my blood work. Ever since last May, my platelet count has been low. We haven't really done anything about it, thinking it would resolve itself. Today the doctor said that my platelets are still low. They did blood work again today and if they are still low, I will need to see a hematologist/oncologist. Apparently they are the same doctor. She said not to freak out about going there, they just need to make sure everything is okay. We are also going to talk to my Lyme doctor about this.
My red blood cells are also low, so I don't know what's going on. There were several things on my blood work that were not right. I'm sure it's something simple and will be easy to fix.
For now, I'm doing the Wii fit everyday to try and build my strength back up. For a month I've done nothing but lay on the couch, so I've lost a lot of strength! I need to build it back up.

Wednesday, January 5, 2011

Hives, Acts, Spiritual Disciplines

I'm doing pretty good right now! It's been 4 weeks since surgery. I'm just taking it slow. A week and a half ago, I developed hives all over my stomach and incisions. Ever since they started, I've taken Benedryl as often as I can, and I've put cream on them. Nothing is helping! I wake up in the middle of the night to find them bleeding because I scratch them in my sleep. I have tried epson salt baths. I even took steroids for a couple of days to see if that would clear it up, but it didn't. I've gotten bad hives after another one of my surgeries before, but they only lasted a few days and they were right after surgery. We have no idea why the hives would pop up 3 weeks after surgery and last this long with no signs of improving. It's crazy! If anyone has any ideas for us, we would love to hear them! They are so miserable and make my stomach hurt. Hopefully they will get better soon.
We've had problems with my home health group for a while now. They charge us for things that we didn't even order. It's a huge mess. Now, they decided that our contract is over so they showed up last week and took my IV pole away. I was kinda freaking out because I've had that IV pole for almost 2 years. And I still need it! With my port, you have to access it and flush it out at least every 6 weeks so that it doesn't get a blood clot. The only way we can do this is if the home health brings the supplies. My mom is the one who actually accesses it. So now we are trying to find a new home health group who will accept me. We need to find one fast!
I've gotten to get out of the house a couple of times in the past week! On New Years Eve, we went to our friends house with a couple families. They live a mile from us so we didn't have to go far. We had a great time!
I also got to go to church on Sunday morning. I'm so glad I was there! It was such a great time of worship. This year as a church, we are striving to practice more spiritual disciplines. One of my youth ministers preached on Sunday and it was fantastic! It was about training. He started out with this verse.
"Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever." 1 Corinthians 9:25
When you sign up to run a marathon, what do you automatically know you have to do? You have to train. There is no one who would EVER run a marathon without training. That would just be stupid.
When you have a test, you can not perform at your highest unless you study.
So why do we think that as Christians, that we are going to be able to do anything for God without training? Why do we think that we can just go out and do everything without going under strict training?
On Sunday we looked at the miracles in the book of Acts done by the disciples. They performed so many miracles! They did so much for God! We always look at the big things that happen in the Bible. As Phil showed us on Sunday, we fail to look at what happened right before each of the miracles.
Before the disciples performed each miracle, they spent time praying and seeking. Before God used them to do something great, they prayed.
What does that mean to us? We look around wondering why we aren't being used, but we haven't done anything to prepare us to be used. We think that we can go run a marathon for God, but we don't want to train.
On Sunday, we were all given a book for this year. Each month at church, we are going to focus on a different spiritual discipline. Each month we will add to our book. We need to start training so that we can really be ready to be used by God. We need to start training.
We were encouraged to sit in silence before God and just listen. You can learn so much from simply just being quiet before God.
When God told Elijah to go wait for Him on the mountain, He came in a whisper. God didn't come in the earthquake, wind, or fire. He came in a whisper. (1 King 19:10-18)
I pray that we will seek God and get a little bit closer to Him each day.
I'm still sleeping downstairs because climbing stairs is still painful. It's been almost 5 weeks since I've slept in my room. I'm also still wearing sweats all the time since other pants still rub my incisions. I did wear a dress and leggings to church though! That was exciting!
Tomorrow I have a follow up appointment with my surgeon. Hopefully he'll have a plan to help my hives!
I hope you all are having a great week!!

Tuesday, January 4, 2011

Details about what all happened before and after surgery...

 Now here's the more detailed story, mostly so that I can remember what all happened. You all are probably tired of hearing it.
I went to the ER on Saturday, December 4th because I was in so much pain and the on call doctor said we needed to go. He called the ER and told them I was coming. Once we arrived in the ER, they took me up to the CT scan where I was lucky enough to get to change into a hospital gown. I had dye injected into a couple different places in me. Trust me on this one, you're lucky you don't know the details. When the CT scan was done, they finally had a room in the ER ready for me so we were taken there. The doctor came in and said that he had been talking back and forth with the on call gynecologist. My dad actually knew the ER doctor. He was so nice and helpful! They did blood work, started giving me fluids, and gave me some pain medicine. As the pain medicine kicked in, I could finally unclench my jaw and relax a little. The CT scan came back normal, except that everything was not at all normal. Several doctors talked again and decided they needed to admit me to figure out what was wrong. While we were waiting for the transport people to take me to my room, we got to listen to the nurses and patients in the ER. I love eavesdropping. My room in the ER was right by the nurses station so we got to overhear everything. We watched them eat jars of homemade pickles. I'm not joking. It was entertaining to listen to all the calls from ambulances and the nurses talking about the patients. We for sure violated the privacy rules but how could we not hear them?!
Transport came pretty quickly and took me to my room on the 5th floor; the pediatric floor. I won't lie, I loved it there! Not loved it like, "let's go back", but they were so good there. I defiantly didn't like actually being in the hospital, but I'm glad I was on that floor.
To control my pain, they had me on Dilauded which is actually so much stronger than morphine. I was on this around the clock and I still was in pain.
Once I got to my room, I didn't have any more tests besides blood work every few hours. I was on a liquid diet to prepare for surgery. On Sunday night, I had to take a whole bottle of Miralax to also prepare for surgery.
My night nurse was great! She was there Saturday night and Sunday night. Since I was the only one on the floor for most of my stay, she would come hang out in my room and just talk.
I had several people come visit me once I got to my room on Saturday night, so that helped pass time. Once everyone left and it was time to attempt to sleep, it really sunk it about what was going on and where we were. My mom stayed with me while my dad and brother went home. Sleep was no where to be found. I think we slept for an hour before it was time for 2am vitals and medicine. Vitals were at 6am again, but in between then, people were in and out of my room. I wasn't scheduled to get pain and nausea medicine at certain times, so when I asked for it, the nurse would have to come see what I needed, go get the medicine from Narnia, come back and scan my bracelet and give it to me. It just took forever in the middle of the night. I would get medicine every couple hours so it was a crazy night.
My IV was in the crease of my arm, and everytime I bent my arm, the alarms would go off. This happened all night long. The alarms wouldn't shut up until the nurse came in and re-set it. We were up every few minutes because I would bend my arm in my sleep.
On Sunday morning rounds, the doctor came in and said they wanted to do exploratory surgery in the next few days. Until then, I just hung out. I was kept on a liquid diet, fluids, and pain meds. The day nurse on Sunday was fantastic! She was so funny. Early in her shift, she was bringing some medicine to me and she dropped the whole cart of supplies outside of my room. She started laughing so hard and said, "well this will be a fun day"! It really was hilarious. She made us fresh iced tea, none of that cafeteria fake iced tea. We told her about my IV setting off alarms all night so she switched it to my hand which was so much better.
Sunday was full of visitors for me which was really good! They prayed for me several times during church that day, so we had lots of people asking about me and praying. My aunt came and stayed with me and my brother on Sunday night so my parents could go out to eat. I think we watched Elf which is my favorite movie! The youth group Christmas dinner was also that night. I was so sad to miss that.
The doctor couldn't do the surgery on Monday, so insurance kicked me out of the hospital. The doctors didn't want me to go home either, but insurance wouldn't let me stay. To make it to where I could even try to make it home, they had to give me so much medicine. I remember Monday morning, but I don't remember Monday afternoon until Tuesday. We got home on Monday night I think.
They scheduled an appointment with the doctor for Tuesday morning at 8. We got there and he said how would you feel about surgery today? We said that would be great! Surgery was scheduled for 5 on Tuesday.
When we arrived at the hospital (a different one than I was admitted to) at 3 to get ready for surgery, we were told that insurance wouldn't cover anything. The hospital called the doctor and anesthesiologist and they all talked back and forth. We were so close to canceling the surgery. Like, so so close. But, God knew I needed it because he worked everything out. We decided to continue with the surgery an hour before surgery. They didn't have much time to prep me, so they rushed us around. It was crazy. They drew blood, got me in my gown, socks, and leggings so I wouldn't get blood clots, started my IVs, and got all 3 of my hospital bracelets ready. They brought in lots of IV antibiotics and started me on them before surgery. I continued to get them while I was there.
The surgeon came running in the room and said, "let's go"! And off I went to surgery. The surgeon wears high top red converse shoes with his surgical outfit. It's really funny!
I had surgery at a little surgery center and they were so great and fun to be around!
Me before surgery
Landon, me, and one of my nurses before surgery
On the way to surgery. Cute, huh?
I went to surgery at 5:10pm.
When the surgeon came out to talk to my family after surgery, he had a shocked look on his face. He could not believe what he found. He said that women come to him complaining of pain with just one of the problems I had and he would have done surgery on them. I had four problems.
My appendix was huge. My abdomen will filled with blood. There was a cyst the size of an orange. I had endometriosis. They had to make 3 good sized incisions to get everything out.
My family got to come see me in the recovery room almost immediately after surgery because I woke up fast. I was wide awake and was so ready to go home. Everyone was surprised at how fast I went home after surgery. I was sent home wearing white leggings that I had to wear for a few days to help with circulation.
Because of all the internal bleeding, I am very anemic. I'm taking iron pills to help with that. It's interesting because on all of my blood work that was done a week before my surgery (we didn't know what was wrong) I was so anemic. We should have known something was wrong just from that.
These two pictures are of me right after surgery. I'm looking good for sure! Cute hair do and outfit.                                                                                                    

Going home!!!
A week or two after surgery, we got the pathology report from my appendix and I did have acute appendicitis. That means that my appendix could have ruptured at anytime. We're so thankful that the doctors decided to do exploratory surgery. It's very strange how my CT scan and blood work showed nothing, even though I was a mess. But, God took care of everything!
"But now, this is what the LORD says-
he who created you,
he who formed you,
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD your God,
the Holy One of Israel, your Savior" Isaiah 43:1-3