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!

Sleep Study

The hospital just called and I'm doing the sleep study tomorrow night. I go to the hospital right after dinner and stay until the morning. So please pray that they will figure something out.

1st Car!

We've been looking at cars for me for a while now and we finally bought one! It's an '09 Pontiac Vibe that was a program car. I LOVE it!!! The dealerships are desperate to sell cars, so there are some great deals. It's weird to think that I will always talk about my first car! This is it!!!

Waiting...

"I wait for you, O LORD; you will answer, O Lord my God." Psalm 38:15
Well not much has been going on. I have been put on a few new sleep medicines, but none are helping. Last week I had a scary reaction to one. All day Thursday I was hurting really bad and just felt really weird. I went ahead and took the sleeping medicine early that night. An hour after I took it I got so confused and out of it and couldn't walk. I couldn't explain how I felt and just cried. I didn't know what was going on. I finally went to bed around 4:30 the next morning...my days seem so long since I'm up all night. Nothing knocks me out. Every medicine I'm on is suppose to make me tired, but it doesn't. The doctors warn my parents to watch me because I should be passed out from all the medicines. But I still can't sleep. It's very frustrating.

We are waiting on a referral for a sleep study in Children's Hospital. I'll spend the night in the hospital and they'll hook up to 19 wires all over my body and monitor my sleep, or lack of. I'm so ready to start sleeping again. It is completely wearing me out. We are also waiting on a referral to a pain management doctor at Children's Hospital. That will probably take a few months though.

These are some of my medicines and my IV pole (whose name is Squirt). How boring would it be if I didn't name my IV pole?

Syringes and needles for all my shots


These are the flushes for my PICC line


Dressing changes and tubing for my PICC line

Some more supplies

These are some of my oral medicines and formulas that I mix into water

I would like to know some of your favorite verses or quotes! So please leave a comment and let me know! I hope your having a great week!

Lyme Disease Hearing

I have had a pretty good week! Last Thursday I started volunteering at the Lighthouse Medical Clinic. It's a clinic started by our church to help with inner-city families who might not receive health care. I am doing the filing for the clinic once a week for a few hours. It is a great ministry! I am really enjoying helping out there!
I've been able to get out of the house a lot lately which has been so great. I am feeling better and it's nice to be able to do some normal things in between all the shots and IVs. I'm still dealing with pain and fatigue, but I've been able to handle it for the most part. The big problem right now is me not being able to sleep. I'm up until 3 every night and some nights six. Sunday I went to church after only 2 hours of sleep. It was a rough day for me, but I'm glad I went. It's very frustrating and tiring not sleeping. Those infomercials that are on all night every night are getting really annoying... I mean seriously, who is going to buy a nose hair trimmer after watching a whole hour about it at 3 in the morning...not me! They were interesting at first, but every single night is a little too much for me!

Today there is a big Historic Hearing for Lyme Disease in Washington D.C. There are finally enough good doctors who are angry at all the doctors who don't think Lyme exsists in some states and who don't treat it properly. The hearing is to discuss treatment and how Lyme should be handled. We have been to so many doctors here that don't think Lyme exsists in Oklahoma and they aren't even open to talking about it. Most of the doctors we have called won't even take me because I have Lyme. It really is a huge political battle. Maybe this hearing will change their minds...something needs to happen.

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body." 2 Corinthians 4:8-10

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

Another ER trip...

Last week was a pretty good week. I went to visit church camp on Thursday! That was so much fun!! Saturday was a good but busy day. I went to a party for someone at church. We played lots of games outside and I did too much... I didn't sleep Saturday night so Sunday was a really hard day. I was in a lot of pain and was so exhausted. I did get to go to church so that was great! Yesterday I was able to rest so I was doing a little better.
Around midnight last night my PICC line started itching and hurting like crazy. I took some Benadryl and got to sleep at 1:30. I woke up at 2:30 because my PICC line was so much worse. It was an unbearable itch which made it hurt. I tried putting an ice pack and heating pack on it. Nothing was working. I went and got my dad at 4 and we decided to change the dressing. That seemed to make it worse. My mom got up and there was nothing else to do except to go to the hospital. We got to the hospital at 5:30 and my favorite nurses were there! The doctor gave me some steroids and something else instead of Benadryl. It seemed to help immediately. They sent me home at 6:30 this morning and I was able to go to bed. I just woke up and my nurse came to change my PICC dressing again. I started a 6 day steroid pack today so hopefully that will help.
Tomorrow I have an appointment at Children's Hospital with an infectious disease doctor. We're hoping that he will be willing to work with my doctor in Nevada. I will update tomorrow after my appointment. Thank you for all your prayers!

"For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13