More appointments, more treatmentment plans

Warning..there is lots of information in this post and it's very long...
Last Thursday we went to Children's Hospital for my appointment with the pain management team. It's actually a team of pediatric anesthesiologists. I've been seeing them for a little over a year and they have helped a lot! Unlike most doctors in Oklahoma, they believe that Lyme is a big problem here, and they have taken care of several kids with Lyme. They understand how hard it is to find doctors who support Lyme.
Last year, they put me on Amitriptyline (Elavil) to help with pain and most of all, sleep. It is the only medicine that has helped me sleep, and believe me, we have tried everything. There is a little problem though with this medicine. It can cause tachycardia (super fast heart rate) and heart arrhythmia. I had to be on the highest dose that they can give because nothing knocks me out. Because I was on such a high dose, I was having the tachycardia and arrhythmias. Earlier this year I landed in the hospital because of that. We stopped the medicine for a while, but then I started not sleeping again. So we decided to start me back on the medicine, but at a lower dose. Right now I'm on the lowest dose and it's working pretty well! I don't think we need to go back up on it.
On Thursday at my appointment, we discussed the risks of the medicine vs no sleep. They also told us about a medicine like Amitriptyline, but for some people it doesn't have as bad of side effects as Amitriptyline. I forgot what it's called. They didn't know if it would work for me though. We talked about switching to that, but for right now we decided to just stay with Amitriptyline since we know it works. We will just have to monitor my heart and make sure everything is okay.
Friday, my mom had a phone conference with my Lyme doctor in Nevada. We've talked to him several times in the past couple of weeks.
The main problem right now is brain problems. I wish I could completely explain what is going on, but it is so hard to describe. I'm having headaches almost daily. There are memory problems that I'm having. When I read things, I really can't remember anything. This summer I read some books but it was so frustrating because I would have to re-read every chapter several times before I could kind of remember what happened.
I haven't mentioned a lot about the brain problems because it's one of the most frustrating things. It can change you into a completely different person. I know of a person who was my age that had Lyme and one day woke up and she didn't even know who her family was. She would try to run away from home because she thought they had kidnapped her. It's so sad to hear about things like that. I will have conversations, and then immediately have the same conversation because I don't know that I just talked about that. Simple tasks now become so overwhelming. Tasks like looking for something that someone asked me to find. It just overwhelms my brain and I forget everything they said. I'll go downstairs to get something I need, and find myself just standing there for ten minutes not knowing what I'm doing.
I hope this doesn't sound like I'm bragging, but before I got sick, I didn't have to try in school. I just made good grades and planned on graduating with straight A's. Now, I can't even do 20 minutes of work at a time without getting overwhelmed. I just sit there are stare at my work trying to figure out what to do. There's so many things that Lyme does to the brain...
So we talked with my doctor about that and what to do about it. He said part of the brain problem is from toxins. As you kill the Lyme bacteria and co-infections, they give off horrible toxins. Lyme patients bodies are so unbelievably toxic. I'm starting lots of detoxing to try and cut back on the toxins. I'm also starting back up on all of my shots and medicines. I had stopped when the gallbladder problems started.
My doctor was so glad to know that I had surgery to take out my gallbladder. He suspects that I've been having gallbladder problems for several months. After we went to the clinic in Nevada in May, I started having stomach problems. He said that even though the surgery is laparoscopic and supposedly "not a big deal", it's a big deal to have gallbladder problems. He's so glad that we got that taken care of because you do not want to mess around with that.
A few times this weekend, I have eaten spicy and fatty foods and then have gotten sick with nausea and abdominal pain. We told my doctor this and he told me to stay away from spicy and fatty foods for a while. He explained what the gallbladder does and so it makes since as to why my body needs time to adjust. I'm glad to know why I've been getting sick!
Last week I was feeling pretty good! I left the house almost everyday last week! Thursday night my parents and I went to a thing for Oklahoma Christian University. It was 'A night with the president'. There was a reception at the president of Oklahoma Christian's house for juniors and seniors looking at OC. It was great! We were the last ones to leave because we were talking to the president and first lady. It's funny because at church or any event my family is always the last to leave. It's like a law or something. It never fails.
On Friday I got to go to senior lunch and then to a movie that night!
On Saturday I did IV fluids at home. I started not feeling well Saturday afternoon and am still not feeling well. I've been achy, had a little fever, and just feel terrible. I went to church Sunday morning which wasn't a smart idea. Yesterday I took a nap and felt a little better. Hopefully I'll feel better soon!

the hospital...

I will try to explain what happened last night. I'm still trying to process it and I don't understand it. We are really confused. I went to the Bible study at church last night! It was so good. I'll write about it later.

I got home around 9 and was watching tv with my family. All of a sudden, my heart started getting out of beat. At first it wasn't bad and it would happen then quit. I ignored it. Then it started happening more frequently and stronger. It felt like my heart was skipping beats and had no rhythm. My parents listened to my heart and we knew something was not right. Then it started getting painful and harder and wasn't stopping. I felt so weird. I was freaking out because I knew something was wrong. We called the emergency cardiologist and he said to go to the hospital immediately.

So we headed down to Childrens hospital. We checked in and within 5 minutes of getting there, 2 doctors came out to get me. Apparently the emergency cardiologist had called and told them I was coming. There was lots of people in the ER but they said I needed to get a room fast. They rushed me in triage and just quickly took my vitals and put the pulse ox on me. They used the phrase level 3 about me. They took me to my room and the EKG machine was waiting there. They got me hooked up really fast and once they saw what my heart was doing there were at least 6 doctors who were standing around me. I have never seen so many doctors rushing in to see me. It all happened so fast.

They watched the monitor for a few minutes and then they all left and sent the results to the emergency cardiologist. It was weird because at least two times they would announce over the ER speakers that cardiology was on the phone. So many doctors kept coming in and out of my room.

They hooked me up to another monitor. So I was being monitored on 2 heart monitors. Alarms went off on one of them because my heart rate was so high. I had 15 wires hooked up everywhere.

The cardiologist and the doctors in the ER kept talking several times on the phone. They wanted to do some blood tests so they came and took blood. They just monitored me for a while.

They felt comfortable sending me home so I got home sometime this morning.

This morning the cardiologist had already talked to my cardiologist and they agreed that I need to stop my heart medicine.

They also think I should stop my sleep medicine (Amitriptyine) because they think that might be causing problems too. The pain management at Childrens says the sleep medicine is not causing it. So all those doctors are talking to see what to do.

It has been a crazy hospital trip...it was really scary.

There have been so many different people calling us today. If it starts to happen again then I have to go back to the hospital.

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

Echo and another appointment

On Monday I went to Children's hospital for the Echo. It was interesting! I got to see my heart on the screen the whole time. She monitored different parts of my heart with the ultrasound. She said that she thinks my heart is good structurally. We asked if I still need to go to the Cardiologist. She said yes because the Cardiologist will look at different things. And there is still something going on with my heart. The nurse said I should not be able to feel my heart pounding all the time and it needs to slow down. So the Cardiologist appointment is in the beginning of February at Mercy Hospital.

Yesterday and last night I had a horrible migraine. I had to take 2 migraine pills, and 2 different kind of pain medicines and it still wasn't better. I felt horrible. It's mostly gone today but it still hurts and I'm really worn out.

Today I'm going back to Children's Hospital for an appointment with my pain management team.

New Treatment plans..

On Tuesday I went to the pain management team at Children's hospital. They were very nice and open to discuss anything. All they did was put me on Elevil at bedtime. It's suppose to help with sleep and pain, but it won't start working for 3-4 weeks. I had an EKG there because the medicine I'm on can mess up your heart.

Wednesday I went to Seminole. The doctor was really great! She knows about all the controversies with Lyme. She said she has treated so many people with Lyme. What?! Lyme in Oklahoma..it's true. I'm glad at least one doctor in the state actually knows that it is becoming a big problem. We were at the doctor for about 4 hours talking to her. She also did some blood work on my thyroid. I'm having more neurological symptoms so she said that the Lyme is spreading more to my brain. That's not good at all. She wants me to do IV antibiotics everyday for at least 3 months. So I got my first dose yesterday at her clinic. Antibiotics make me so sick. Last time I was on them I was in the Emergency Room several nights in a row..it was bad. Last night I was up all night with a migraine and today I feel horrible. She also put me on more shots and supplements. It's crazy how much I'm on right now. So please pray that the 3 months of antibiotics do more help than harm.. I'm really scared to be on them, but it's our only option right now. I'm so thankful that we found a doctor that is actually on our side of this battle!

I hope you have a great weekend!

"The LORD will fight for you; you need only to be still." Exodus 14:14

“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” Isaiah 46:4

2 New Doctors

Tomorrow I'm going to a pain management team at Children's hospital in OKC. I'm excited and nervous. Going to new doctors can be either great or horrible. There is no in between. I've had too many horrible experiences with new doctors. But they sounded really willing to help me.

Wednesday I'm going to a new doctor in Seminole. It is a crazy week!

Yesterday at church we had a great lesson about this chapter in Isaiah. It's kinda long but I recommend you read the whole thing!

"The desert and the parched land will be glad;
the wilderness will rejoice and blossom.
Like the crocus, it will burst into bloom;
it will rejoice greatly and shout for joy.
The glory of Lebanon will be given to it,
the splendor of Carmel and Sharon;
they will see the glory of the LORD,
the splendor of our God.
Strengthen the feeble hands,
steady the knees that give way;

say to those with fearful hearts,
"Be strong, do not fear;
your God will come,
he will come with vengeance;
with divine retribution
he will come to save you."

Then will the eyes of the blind be opened
and the ears of the deaf unstopped.

Then will the lame leap like a deer,
and the mute tongue shout for joy.
Water will gush forth in the wilderness
and streams in the desert.

The burning sand will become a pool,
the thirsty ground bubbling springs.
In the haunts where jackals once lay,
grass and reeds and papyrus will grow.

And a highway will be there;
it will be called the Way of Holiness.
The unclean will not journey on it;
it will be for those who walk in that Way;
wicked fools will not go about on it.

No lion will be there,
nor will any ferocious beast get up on it;
they will not be found there.
But only the redeemed will walk there,
and the ransomed of the LORD will return.

They will enter Zion with singing;
everlasting joy will crown their heads.
Gladness and joy will overtake them,
and sorrow and sighing will flee away. " Isaiah 35

Lots of appointments..

There has been a lot going on lately. We found a doctor in Seminole, Ok that treats Lyme with both conventional and natural medicines. My appointment is next Wednesday with her. We're praying that she really does treat Lyme and actually knows something about it.

I'm going to a pain management team at Children's hospital on September 8th. They said that they treat tons of teens with Lyme and they understand the pain and lack of sleep in a Lyme patient. The pain management doctors are also the anesthesiologists for Children's. They sounded really helpful!
We're still waiting on the sleep lab results.

My homebound teacher called today and I'm starting homebound again on Thursday. She'll come to my house once a week to answer any questions I have or help with anything. I will do all my work online through the school. They have been really helpful and encouraging.

My home nurse still comes once a week to change the PICC line dressing and take my vitals and everything. My PICC line has been in for almost 6 months so it's almost time to get it out. We're trying to decide what to do next. Not doing IVs is not really an option. Our choices are another PICC line or a port. I pick the port. It's a device that is inserted into the upper chest and goes to the heart. The nice thing about a port is that it is under the skin and you can't see it-unlike the PICC line. The port can also be left in for years. But you do have to have surgery to get it put in. We are hoping that the pain management team could order the port since I don't really have a doctor that can order it. Plus, they would be the ones we worked with anyway since they do the anesthesia for surgeries. We are just looking at options right now.

There is a really cool website where you can make something with words and print it or do whatever with it. Mine is hard to see, but there are verses and different words. You can click on the picture to see it bigger. Here's the website:

http://www.wordle.net/

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me." Micah 7:7

You want me to SLEEP like this?!?!

I spent the night at the hospital last night for a sleep study and monitoring. The sleep study area is a part of Children's hospital on the 10th floor that is a little scary.. You press a button for them to let you in and when you get inside it's a long dark hallway that is completely silent. Apparently I was the first one there because it was deserted. We got there at 7:15 and filled out all the paper work and got to my room. The rooms are really nice! They are just hospital rooms that are a little bigger and decorated really nice. Why can't all hospital rooms look like that? And, the shower was a whole lot nicer than the rest of Children's showers, which doesn't make sense because your not even allowed to take a shower during the sleep study. Great planning, I know.

They told me to get ready for bed and they would come back and hook me up. Hook up took about an hour...so I got done with that at 9:15. They wanted lights to go out at 10. What?! I don't fall asleep until 4 am! That is like 6 hours from now.. So they let me stay up "late" and read while they hooked up other patients.
There were wires on my head, neck, face, heart, legs, and stomach. Then I had two different things in my nose and mouth. I had a belt on my chest and stomach that was really tight and almost suffocated me. Oh well, they would have known if I stopped breathing, since they monitor your every move. I also had a pulse-ox on my finger to monitor my oxygen levels.
I was a little freaked out to even move with all the wires and everything. Also, after everything was hooked up, my nurse came over the intercom and made me move my eyes and hold my breath and all this testing so they could make sure they could see me and know everything I did. I asked what button I pushed if I had to go to the bathroom (which I think would have been impossible. Good thing I dehydrated myself yesterday so I wouldn't have to go...) and she said "oh just talk and say something, we can hear everything you say." OH that makes me feel better. So you've heard everything I've been saying the whole time I've been here?! Wonderful.

So lights went out around 11 and I layed there and made faces at the camera. Just kidding, I should have though. It was a long night of restless sleep. How could you sleep being hooked up like that and knowing that they are watching you? This morning all she could tell us was that I woke up a lot. We get the results back in 7-10 business days. When she took all the wires and monitors off, there was a glob of sticky paste everywhere that there had been a wire. That apparently helped hold the wires in place and helped to get an accurate reading. I still have globs in my hair. I hope it comes out easily!

The room was really nice!