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Monday, December 28, 2009

Lots of pictures!

Today we had pictures done with my whole family. It was the perfect day to take pictures. I put a couple on here that they took with my camera.








Sandbox on the 1st floor balcony





Our snowman building contest! Landon and I won!








My family spent the whole day feeding birds...the birds came up on our balcony and almost killed us. I am terrified of birds. Thanks family.


Saturday, December 26, 2009

More Destin pictures!

These are some houses across the street from us.

The fountain in the courtyard of the entrance to our house.


The front door to our house.


A cute hut on our beach.


Staircase down to the beach.


Sunsets are my favorite.




The sunset tonight






"Taste and see that the LORD is good;
blessed is the man who takes refuge in him." Psalm 34:8

Friday, December 25, 2009

Destin Florida!

On Wednesday morning we left for Destin. We left at 4am and got to Destin around 9pm Wednesday night. It was a very long drive but my brother and I got Itouches for Christmas so that kept us happy.

My grandpa and aunt got here on Thursday morning around 4. My grandma was supposed to leave OKC at 8 on Thursday morning. Well the huge snow storm (apparently really huge storm) moved in and she was on 1 of the 3 planes to go out before the airport closed. She got here last night and now everyone is here! God was watching over us. It is GORGEOUS here. Our house is amazing and the view is even better.

The 1st floor is the house entrance. It has a small dining room, wet bar, living room, bedroom, and bath. It has a balcony overlooking the ocean. Every floor has a wall of windows to the ocean and balcony.

The private staircase down to the beach is off of the 1st floor balcony.

The 2nd and main floor has the kitchen, main living and dining room, half bath, bedroom with 4 bunks with private balcony, and bathroom, and laundry room. The living room, dining room, and kitchen are all along the wall of windows and balcony.

The 3rd floor has the master room (its a huge room) with a bathroom, 2 bedrooms with a balcony to the front of the house, and 2 bathrooms.

That's 5 bedrooms and 5 and a half bathrooms. It can fit like 20 people but we only have seven! It's so great!!

Since our house is 3 floors there is an elevator in it. I don't like elevators so I didn't go in the one here because it says "don't ride when home alone. Cell phones don't work in here". I'm not even kidding. Well I got the courage to go ride in it and my dad LOCKED ME IN IT. He pushed on the door from the outside so I couldn't get out...I FREAKED out. Almost cried. Lets just say that I don't ride the elevator very much. Also, there is a ghost living in the elevator. It just randomly goes from one floor to another and it's really loud. It's a great house though!!

Last night there was a huge storm here. More like a hurricane. There was a TORNADO warning on the BEACH. What did we do? We stayed on the 2nd floor and kept playing a card game. We also watched the huge waves! We're such rebels.

This morning (Christmas morning) we all had one present to open (since we had Christmas last week) and then we had a wonderful breakfast.


Now for the pictures! I will have to split this up into several posts.
Squirt and I in the elevator

Squirt and I on the 2nd floor balcony


Our house from the beach


So pretty





Tomorrow I will post more pictures!


"The heavens declare the glory of God;
the skies proclaim the work of his hands." Psalm 19:1

Christmas last week.

Since we are in Destin for Christmas we had Christmas last week at home. So here are some pictures from that.




Monday, December 21, 2009

Dear Lyme Disease

I hate to break it to you but I just wanted to inform you that your appointments to hang out with me December 23- January 1 are cancelled. Sorry. I am actually going to be hanging out with my friend Destin. Destin Florida that is. Destin doesn't accommodate people that have Disease as their last name. So since your name is Lyme DISEASE you can't come. Don't try any tricks either. I AM going to see Destin and I WILL have a great time without you. Thanks for understanding.
Victoria on behalf of Destin

Thursday, December 17, 2009

New Video about My Story

This is a better version of my story. I made the slides longer so you can actually read them and I added another song!
video
I made it longer because last night they showed my video to the youth group along with the story of another teen battling cancer. It was a great night of praise and encouragment.

Monday, December 14, 2009

I've gone to every hospital today.

I went to the sleep doctor last week and he decided to take me off the Neuronton because of my side effects. So I'm not taking that anymore. I started back on the Amitriptyline to help with sleep.
I got to do a lot over the weekend! It was so great!!
I have started going to Guthrie everyday to do an infared sauna to help with detox. I know it sounds relaxing but I really don't like it. I feel like I'm suffocating in the sauna...
So today I went to Guthrie then I went to Children's hospital. Every week I go there to a psychologist team who helps kids and teen in chronic pain deal with coping and try to control what we can control. They know about the reality of dealing with dailey chronic sickness in children and teens. Today was only my second time but they are really nice!
When I got home we called the hospital and they said to come on out for the blood cultures. No one told us when to come so we had to call ourselves. Around 4 we headed out to Mercy hospital. First I checked in at Admitting. Ok, hold on. The admitting nurse first asked for my name and date of birth. Then I'm guessing she put that in the computer but it took about 15 minutes. I mean, really? What do they really do when they check you in? Check emails? Secretly Facebook chat with the other nurses about their crazy patients? Who knows, but it takes way too long.
For a blood culture they have to take blood out of both arms because they are looking for an infection in the blood. They watch the cultures for about 48 hours and see if anything grows. The nurse actually found my veins! Hopefully they will actually call us with the results!
After having the blood cultures the nurse at the lab sent us to radiology to have an Echo (echocardiogram) of my heart. Well there was SO much confusion and I wasn't on the schedule. They tried to fit me in but the test takes about an hour so they didn't have time for me. It was a long process. I'm finally home!
I got to go to Guthrie, Children's hospital, and Mercy hospital today! It was a crazy day!

"....And I'm going to keep that celebration going because I know how it's going to turn out. Through your faithful prayers and the generous response of the Spirit of Jesus Christ, everything He wants to do in and through me will be done. I can hardly wait to continue on my course...." Philippians 1:18-21 (the Message)

Wednesday, December 9, 2009

So many appointments

There has been a lot of medical things to figure out lately. I am probably forgetting something but hopefully I'll remember everything that has been going on. Last week at my pain management appointment we mostly discussed my heart rate problems. They asked if I had the heart problems before my port. I said no and they explained that the port goes from my right chest, up to my neck through the jugular vein and down straight to my heart. If the port is too long it can actually kinda stab into your heart and irritate it. So I had some xrays done at the hospital to see if my port was too long. They said it would be easy to fix so we were hoping that was the problem.
We called them back today and they said that my port is fine..
We talked to my Lyme doctor in Nevada yesterday and he said that if it is not the port, then there could be a couple things going on. The Lyme could be really getting inside my heart and attacking it, causing the fast heart rate. Or I could have an infection in my blood causing the fast heart rate and nausea. He wants me to go to my primary care and have a blood culture.
I'm still taking the Neuronton (the anti-seizure medicine) and I hate it so much. The pain management doctor wants me to stay on it. I also go to the sleep doctor tomorrow so we'll see what he says about that. I take it when I get up and when I go to sleep so I just feel out of it and confused all the time. I feel like I'm in a dream. I don't think there are any other options though so I guess I'll have to stay on it.
On a happier note, my family is going to Destin, Florida for Christmas! We are renting a house right on the beach. I'm so excited! My grandparents and aunt are going with us too!
Christmas is so soon! I'm getting excited!


"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.

The Sovereign LORD is my strength;
he makes my feet like the feet of a deer,
he enables me to go on the heights." Habakkuk 3:17-19

Thursday, December 3, 2009

My journey video!

A year ago today I was diagnosed and started treatment. Here's the video I made about my journey! There's music so make sure and turn that on.
video

Wednesday, December 2, 2009

If doctors were money, I'd be a millionaire..quick update

I wish there was a contest of who had the most doctors..because I think I would be close to winning. My primary care doctor called and said that he wants me to see a Cardiologist for my rapid heart beat. They couldn't get me in until February though. That will be my 9th doctor right now! Goodness. Every doctor wants to send you to someone else, who sends you to someone else, and so on. At least I have doctors!
I'll try to update after my Pain Management appointment today. We have lots of things to talk about so I should have more answers (hopefully).
I hope you have a great day!

Tuesday, December 1, 2009

God's timing, not mine

This has been a hard few days..little sleep (it's 2:30 am right now and I'm wide awake...) and side effects from my new anti-seizure/sleep medicine (I'm not taking it for seizures. It's supposed to help with sleep and pain). I've been dizzy and just feel so out of it. I feel like I'm going to pass out all the time. I'm still not eating a lot which doesn't help with the lack of energy.
On Wednesday I go to my pain management doctor. They don't know that I stopped taking the medicine they put me on so that will be a nice surprise for them. Hopefully they will understand since it seemed to be causing my 140 pulse. My pulse is still 120 after being off the medicine for a week. We're waiting to hear back from my primary care doctor to see if I need to have more heart tests run and see a Cardiologist.
Quiet time with God is a hard discipline to practice. We almost always only do it when it is convenient for us. Lately, God has been requesting the 1-7 am time slot for our quiet time. I have asked Him several times if He could maybe switch times to when I can see His pretty blue sky and sun (or cloudy sky, either is great with me!), but He is sticking to the 1-7 am time slot. It is easier to hear Him and talk to Him since there are no distractions (absolutely nothing on tv, no one else on the planet awake..those kind of things) We have also had some serious conversations around 3 am when I get a little frustrated that I'm still not asleep. Maybe I should stop trying to argue with God and just "be" there, not worrying about what time it is..

I'm almost done with the video I'm making about my journey through the first year of treatment so I will post that Thursday!

This verse speaks to me a lot right now.
"Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth." Psalm 16:10