Monday, September 28, 2009

Great weekend!

This weekend was fall visit at Oklahoma Christian University! There were a ton of juniors and seniors from Memorial Road that went! On Friday during the day you could go to chapel, some classes, and tour the campus. I didn't go to all that though. I went to dinner at OC then we took charter buses to downtown OKC and they had a Summer Singers concert by the canal. We got ice cream and it was perfect weather! We were suppose to go to the OKC bombing memorial to have a devotional, but it started raining. So we went back to OC and had the devo there. After the devo we went to On Cue to get an icee then we went to one of our friend's dorms. My friends spent the night in the dorm, but I decided it would be better if I didn't stay the night. Saturday my friends and I went to lunch under the pavilion at the campus and heard the New Reign group sing! Then we went to Freshman Fanfare. It was a really fun weekend and it was perfect weather!
Alex and I at OC

We are meeting with the surgeon on Wednesday afternoon. They said that once we meet with him, they can usually get me into surgery really soon. I so ready for the PICC line to come out! It hurts all the time now. I think the port will be so much better!
I'm a little scared of the surgery because nothing knocks me out. I mean nothing. And I've been on some pretty strong stuff before. I'm scared that I will still be awake when they do the surgery! But the anesthesia is a lot stronger than any medicines that I've taken. It still worries me though..
"When I am afraid,
I will trust in you.
In God, whose word I praise,
in God I trust; I will not be afraid.
What can mortal man do to me?" Psalm 56:3-4
"The Lord is my light and my salvation—
so why should I be afraid?
The Lord is my fortress, protecting me from danger,
so why should I tremble?" Psalm 27:1

Thursday, September 24, 2009

Crazy Day.

I just got home from the doctor. We had to go to my primary care doctor for a lot of things. We got the results of the sleep study and it showed that I stopped breathing a couple times but not enough for sleep apnea, which is good. It did show that something was causing me to wake up 6 times every hour. He said it had to do with my legs. My primary care referred me to a sleep specialist to see what is going on. So I had to get blood drawn today for the sleep specialist to look at. I have horrible veins. I got to the lab today and asked if they could use my PICC line. Of course they said no. They began to look at my arms to try and find a vein. I had to tell them where my veins were. I know, it's crazy that I have to tell them where my veins are. She stuck me at least 4 times, probably more. It took 45 minutes until she gave up and told us we had to go to the ER so they could draw blood from my PICC line. Thankfully another nurse came in and said she could take it from PICC line. My arms are going to be so bruised!
We asked the doctor about the rash on my back that has been there for over a month. He said it's just a virus that has to run its course.
My PICC line has been in for almost 7 months which is a long time. Everyone says it's the best PICC line they have seen! It has started to hurt all the time which means it needs to come out. We have talked to several doctors and we decided that I need a port. A port is under the skin right under the collar bone. It can last for years and is great because it's under the skin! The port will let me continue to do IVs at home! The doctor referred me to a surgeon at Edmond hospital and said I can hopefully get in to see him next week. When I have the surgery, he will take the PICC line out and put the port in at the same time! I'm ready to get the PICC line out!
In the doctor's office they had the radio station Klove playing and one of my favorite songs came on while they were trying to get blood. It's I Will Rise by Chris Tomlin.

"There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say, "it is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

And I hear the voice of many angels sing, "worthy is the Lamb"
And I hear the cry of every longing heart, "worthy is the Lamb"

"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever." Psalm 73:26

Saturday, September 19, 2009

I survived the lock-in!!

Well I'm alive after the lock-in at church! It was SO much fun. There were about 40 of us so it was a smaller group than the normal lock-ins. Yes, people thought I was absolutely crazy for staying the whole time. I just told them that my body insists on being nocturnal anyway so I might as well be having fun all night and not be at home. That was the first time I've spent the night somewhere else besides my house or the hospital in a long long time. Here's what we did all night.
10:30pm- getting icees at On Cue aka the new hangout spot for Edmond..
11pm-lock-in starts
11:30pm-12:30am- capture the flag in the dark in the whole building plus outside
12:30-1:30am- discussion about leadership team and breaking into small groups to plan
1:30-2am- devotional
2am- tye-dye leadership team tee shirts
3-8am- "sleep time" apparently everyone did go to sleep except me and my friend. We asked the youth ministers if we could sleep in the kitchen because we were hungry and we brought popcorn and hot chocolate and they said yes! So we were up way too late. I think I slept maybe an hour.
8:30am- clean the building
9:30-10am- breakfast and free time
10-11am- the Surprise. We had been waiting all night for the surprise. We all had to close our eyes and we were put in specific places. When were opened our eyes we were in the gym getting ready to have a work out session. Someone had the brilliant idea for us to have a team building experience by working out right after the lock-in. Great idea! NOT.
I did most of the exercises which is impressive since some days I can't even get off the couch. I am definitely paying for staying up all night and actually doing a whole work out. I'm hurting a lot and I know tomorrow will be worse. Oh well! It was so much fun!!

Thursday, September 17, 2009

"The sun'll come out tomorrow so you gotta hang on till tomorrow, they'll be sun!" ...probably not though

It has been a long week! Last weekend I was really sick from the antibiotics. I haven't had another dose and we're waiting to see what the doctor wants to do. Ever since I've been really sick I randomly get a rash on arms. It comes and goes all the time. We asked the doctor about it and she said that I probably have the hands, foot, and mouth disease still in my system from when I had it when I was a kid. I thought it was weird that I could still have that virus in my body. I still have a different kind of rash on my back. We're not sure what it is from but it's been there for 3 or 4 weeks. My muscles have been twitching a lot which is a little annoying.
I also started steroids last week. I absolutely hate them. They make me feel weird and I don't feel like myself.
I haven't left my house at all this week..which makes everyday go by so slow. Plus it's been raining non-stop for a while. I'm ready for the sun to come out! Earlier this week my brother was home with a stomach bug. Apparently there are tons of viruses going around... swine flu, strep, stomach bugs, and everything else.
I've done a lot of my school work this week! I've been doing 2-3 lessons a day which is so much better than when I did 2 lessons a week. I really need more motivation though.
In the youth group at church we have a leadership team. Tomorrow night until Saturday we're having a retreat to brainstorm and figure out how to organize events for the youth group and how to get everyone involved. Usually the retreat is somewhere else but this year it is just at church. I'm so glad that we aren't actually going somewhere far away so that I can go! I'm trying to rest as much as I can and do a lot of IVs so that I can make it through the retreat. I'm really excited! It will be SO great to get out of the house and go somewhere that doesn't involve the hospital or doctors.
"Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:16
"The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm—
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore."
Psalm 121:5-8
I haven't uploaded any pictures lately so here are some from our trip to Europe last fall! These are some of my favorite pictures from Vienna! It is such a beautiful place!

I hope you have a great weekend!

Thursday, September 10, 2009

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'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 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

Monday, September 7, 2009

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

Saturday, September 5, 2009

Laughter is the Best Medicine

I'm finally getting over this upper respiratory infection! I had a really hard night last night though. The pain was worse than normal. My joints hurt so bad. Right now the worst pain is in my knees and elbows. Last night nothing was helping the pain. I took my pain medicine which usually relieves the pain some. It didn't do anything last night. I read until about 2am then it went downhill from there. I was hurting so much and just wanted to go to sleep. At 4:45 I took another bath to help the pain. It was the fourth bath that night. I finally fell asleep at 5:30 but still woke up a lot. It was such a long night.
Right now I'm doing an IV and later I'm doing a homeopathic pain medicine through my PICC line called an arthritis push.

These are some funny things about everyday life with Lyme. You have to learn to laugh at all the silly things that come along with being sick.
"You Might Have Lyme if...
-You know what LLMD (Lyme Literate Medical Doctor) means, and you have one.

- At an appointment with your LLMD the nurse has asked why you are "all dressed up" when you wore sweat pants without holes in them instead of PJs to your appointment.

- Showering is a two hour process with a three hour recovery period.

-Some days are "shower-optional".

-The happiest day of your life was the one when you were diagnosed with Lyme.

-When you were diagnosed with Lyme you cried, shouted, or hugged your LLMD (which was slightly awkward for both of you).

-They know you by name at your local ER.

-You have more pills in your closet than a drug dealer.

-Your pain management specialist has informed you that your regiment of painkillers should be enough to tranquilize a horse, but they have little to no effect on you.

-You can't sleep even though you're always exhausted. See above for horse tranquilizer dilemma.

- The list of foods you CAN'T eat is longer than the list of foods you can.

-Your BMI is so low that you legally couldn't be a runway model in approximately ten countries.

-You have mysterious bruises, despite spending the majority of your day in bed.

-You (or your mom, dad, or caretaker) has come thisclose to having a fist-fight with a nurse or doctor who wasn't being sensitive enough to your needs.

-You bribe your home nurses with candy so they'll show up on time and keep the poking to a minimum.

- You cry if you have to go away for the night and realize when you get there that you forgot to pack the Glad Press 'n Seal wrap. (for showering with the PICC line)

-You have a PICC line, and were initially paranoid about keeping it sterile when the doctor who put it in told you a bunch of horror stories about sepsis, but now you don't even usually remember to cover in in public.

-You are totally un-phased by people staring at you in public. You suspect it might be due to your wheelchair, PICC line, Michael Jackson style surgical mask or something, but who really knows?

-You laugh when you and another Lyme friend simultaneously have to go to the ER, and swap amusing stories when you get back.

-Your favorite day of the week is "dressing change day" and you (politely) demand that your nurse scratch your arm with gauze for as long as possible.

-You can't watch commercials because of the sudden changes in light and noise, and you think that sort of thing should probably be illegal.

- Your friends no longer think its odd for you to randomly burst out laughing and/or sobbing.

-You've also devised tricks to scam your insurance company to pay for rejected medications.

-Your LLMD is programmed in your phone and under recent calls all too often.

- Your nurse gives you her personal cell number, and calls you just to chit chat.

-You look forward to having wheel chair races with the next person up to the challenge!

-Your sister goes to get her picture taken and someone says “say cheese” but she says “ LYME DISEASE!” instead.

- You could probably draw your own blood. And instruct the nurses which vein to use.

-When you can read your blood work better than your PCP, nurses, and most medical students.

-Going to the doctor is considered an outing.

-You are able to diagnose other Lyme patients before 20 specialists can.

Add LOTS more, everyone! Every case of Lyme is different, some are more severe than others, but I hope we can all have a giggle about its quirks while we're working to get well. We can beat this! Hope this puts a smile on your face!"

"He will once again fill your mouth with laughter
and your lips with shouts of joy." Job 8:21

Friday, September 4, 2009

Hard Week

The doctor finally called us back and said I have a virus. I've been feeling really bad and couldn't even go to church Wednesday night. It's going to take a while to recover. So I've been doing IV fluids and breathing treatments every 2 hours. I have a rash all over my back and we're not sure why. It doesn't itch or anything, it's just there.
Several people have been asking about my PICC line (peripherally inserted central catheter) and IVs at home so here's some pictures and details. The PICC line goes all the way from my arm to my heart through a vein. One PICC line can stay in up to a year if it is well taken care of. Most people have theirs 4-6 months. It can't get wet at all, which makes showering very difficult. When I get the PICC line out it will be great to shower again without having to wrap my arm in plastic wrap and tape and hold it above my head.
I can start the IVs and everything by myself, which is great. Not very many people get to become nurses at the age 16..try not to be jealous. Ok, real nurses do a whole lot more than I do.
Everyday I have to flush it with saline and heparin. An IV takes about 3 hours. Sometimes I do 2 IVs back to back so that's 6 hours. It's great fun, trust me. When I'm not using the PICC line, I wrap it up in a mesh wrap so that it doesn't get pulled out. I've had a few times where it has gotten caught on something and almost came out.
Flushing it with saline

All hooked up to an IV.

Flushing it with heparin.

Tuesday, September 1, 2009

Quick Updates

I went to our primary care doctor this morning for the cold, throat, chest crud that is going on. I finally went to sleep around 4:30 this morning after having to breathe in a paper sack for a while...We're still waiting on the lab results, but he put me on an antibiotic. I feel like I have strep but thankfully my strep test was negative. So we'll see what the blood tests show.
I'm actually not going to the doctor in Seminole tomorrow. We didn't get the paperwork to them or something so I'm going next Wednesday. That is better since I'm sick right now.

Trading My Sorrows

It's almost 3am on Tuesday..I'm asking for prayers. I've been up all night with extreme throat and chest pain. I've really been struggling to breathe for the past hour and a half. My breathing is still really heavy and fast. I'm so dizzy and shaky from not being able to breathe. I'm so exausted. I'm going to the doctor tomorrow. Please keep me in your prayers. It's going to be a long night.
I started homebound again last week. My teacher came out for an hour and a half and we worked on mostly Algebra. I'm trying to finish Algebra 2 and English 2 by December so that I can take the EOI test. Then I will work on Chemistry and World History. I'm really a semester behind. School is a lot harder than I thought it would be. I really haven't done any school work since March, so it's hard to get back into it. Plus, all my work is online, meaning I get distracted a lot. And there are a lot of distractions at home. To get those two subjects done by December I am suppose to do 3 lessons in each subject a day. I thought I was doing good by getting a lesson done every couple days..but she said that we just have to accept where I am and what I can do. It's hard though.
I had a great weekend! I hung out with friends and got to go to church! It was wonderful. I have a terrible cold and sore throat though. I feel like I have a sinus infection. I am so wiped out. I guess I got it from church. My teacher came again today but she didn't stay long. I tried to work on school but I felt so bad. She said not to worry about it and just rest. I'm learning to not worry about anything. Just take it a minute at a time. Be thankful for that minute.
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Matthew 6:34 (the message)
I go to the doctor in Seminole on Wednesday. So please be praying that it goes well and that she can help me. We're making progress. It's great that she has actually agreed to take on my case. Most doctors haven't even gone that far! I really really need a doctor that is not across the country..yes we'll keep going to the clinic in Nevada, but we need a doctor here in Oklahoma.
This is a link to the documentary that has just come out about Lyme Disease. The movie tells about how Lyme is becoming a silent epidemic in the US. It tells stories of how real the disease is. How the blood tests aren't accurate. It tells the story of how so many are misdiagnosed with fibromyalgia, MS, rheumatoid arthritis and so much more. It tells how the CDC says Lyme doesn't exist in some states, even though there are so many cases of dogs having Lyme is every single state. It tells the story of doctors being shut down because they treat a Lyme patient longer than the recommended 3-4 weeks of antibiotics. It tells the story of the political controversy of the disease-about how Chronic Lyme does exist. It tells the story of people knowing more about the disease they have than the doctor treating them. It tells the stories of people being rejected by doctors because their case is too difficult. It is a sad story. Sad that no one will listen and that people have to suffer so much. But it is also a story of great hope. Hope that there is something better to come. Hope that we can make a difference by telling our stories. We're trying to bring awareness to help those who are misdiagnosed or don't even know the disease exists. Because it is a serious problem affecting people in every state. Please go read the background of the movie and watch the trailer, and bring awareness.
"You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing to you and not be silent.
O LORD my God, I will give you thanks forever." Psalm 30:11-12
This is a great song about having the joy of the Lord.
Trading My Sorrows by Darrell Evans
I'm trading my sorrows
I'm trading my shame
I'm laying them down
For the joy of the Lord
I'm trading my sickness
I'm trading my pain
I'm laying them down
For the joy of the Lord
We Say
Yes Lord yes Lord
Yes yes Lord
Yes Lord yes Lord
Yes yes Lord
Yes Lord yes Lord
Yes yes Lord Amen
I am pressed but not crushed
Persecuted not abandoned
Struck down but not destroyed
I am blessed beyond the curse
For his promise will endure
That his joy's gonna be my strength
Though the sorrow may last for the night
His joy comes with the morning"
I will be updating soon with what we find out at the new doctor. I hope you are having a great week!