One good reason for shots!

One of the shots I do is a desensitization shot for the Amitriptyline (sleep medicine that was possible what put me in the hospital a couple weeks ago). We think that medicine is what caused my heart problems. But the thing is, that is the ONLY medicine in the whole wide world that helps me sleep. Remember when I said I'm on enough medicine to tranquilize a horse and it did nothing to me? Yeah I still have that problem. So when I got off of the Amitriptyline in Nevada, my sleep went way down hill and it keeps getting worse. The past couple days have been really hard from the lack of sleep so we emailed my doctor in Nevada and asked if I could start the Amitriptyline again since I'm on the desensitization shots. He said yes!!!! We will really have to monitor my heart rate and rhythm though. Please pray that I will not have any of the serious heart problems again from the medicine. I am starting on a very low dose then working back up to the highest dose I can be on (Remember horse tranquilizing problem again). I need to sleep. I won't get better unless I sleep.

It feels like we just go in circles chasing one problem after another. I can't sleep so I'm put on sleep medicine. The sleep medicine causes heart problems. I'm put on heart medicine to help heart problems but those side effects turn me into another person, causing me not to sleep.

Just like when I can't sleep because I'm in pain. But when I don't sleep I'm in more pain which causing me not to sleep and so on....

This is how it is with EVERY problem I have and it's so frustrating. It's really hard to figure out if the side effects are worth it.

Yesterday I did so much! It was wonderful!!!! But at the end of the day, I started to crash. When I got home I got so sick. I started hurting so much and was nauseous. I was not a happy camper. It was not pleasant to be so exhausted but not able to sleep.

Today I'm in a lot of pain and just don't feel well at all. Not being able to rest or sleep is the worst thing in the world. It means you never get a break from anything.

"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

I heard this song yesterday and it reminds me that God does have a plan for everything and that I am where I'm supposed to be, even when I wish it was different.

Our God is in Control by Steven Curtis Chapman

This is not how it should be

This is not how it could be

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

Our God is in control

(Holy, holy, holy) x2

Our God is in control

(Holy, holy, holy)

Our God is in control

(Holy, holy, holy)

Dear construction workers,

We are not friends anymore. Now that you live across the street from me, I just wanted to tell you whats going on between you and I. We have been spending too much time together and I've decided that it's just not going to work out.

I am sending you my resume because I think know that I can move around dirt faster than you.

Also, I would appreciate if you would go green like the rest of the world, and not use machines that use so much fuel break my ear drums.

I do not approve of your 6am - 6pm dirt moving party. I repeat, I do not approve. I did not invite the deep rumbling noises you cause to my party of nausea and sensitivity to noise. I already have too many fun side effects from me, myself, and I.

I ask that you stop your dirt moving parties now.

Thanks for not going green,

Victoria

It's 2:53am and I'm still goin' strong...kinda

It has been/still is a rough night. It started with me getting ready to eat dinner and then having a wave of nausea hit fast and hard. I took some medicine and went to bed...when I tell my parents goodnight and say I'm going to bed, it is just understood that I mean that I'm going to lay down and will most likely be back downstairs several times during the night because of the fight sleep and I are in. In my fun world goodnight means, see you in an hour when House Hunters is over and I need some popcorn and hot chocolate. Then...repeat this process several times until I think I have used enough energy going up and down the stairs to be able to beat sleep. That is my nightly routine! Sometimes, like tonight, I start this process around 7. Other times I start it at midnight. No matter what time I start this, I always have to fight sleep.
So around midnight I realized I was not going sleep anytime soon. Some nights I KNOW I won't sleep. It's very weird... tonight I haven't been able to sleep because I'm in a lot of pain and I'm sweating like crazy but I'm freezing. I think I'm having blood sugar issues because I started shaking SO much and was really light headed and weak. So somehow I stumbled downstairs for the 5th time and got some yogurt and Gatorade. I came back upstairs and was just peacefully watching tv when I felt ANOTHER earthquake. This time I RAN downstairs and started crying and freaking out. Feeling horrible plus being angry about not sleeping plus another earthquake is not the best mixture. I looked online and it was a 3.7 magnitude and the center was a MILE from my house. After calming down kinda I took my dog upstairs with me and watched more tv. Twenty minutes later I decided I needed to take a bath to help the pain. So I went back downstairs to take a bath and now I'm back upstairs. Being angry that I'm not asleep does not help anything...I know I'm supposed to try and relax so I can maybe sleep but that's a little hard to do right now. I am going to try to go to church but it will be a hard day. I hope you have a peaceful weekend!

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

Trading My Sorrows

*UPDATE*

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.
http://www.underourskin.com/

"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!

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.

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!