One problem after another

I know I have mentioned this before, but it's still a big problem. Because of my really high heart rate, I was put on a beta blocker. A couple weeks after starting it, I was taken off of it. I was so dizzy and out of it and a completely different person. My cardiologist said that I can not be put on beta blockers again because I can't handle them. So I was put on a medicine that comes from some plant I think. It's a very old medicine. He assured us that I would not react to it. He obviously doesn't really know me, because I reacted to it. That is what brought me to the hospital a week or so ago. My heart was jumping around all over the place. In the hospital, my cardiologist and the on call cardiologist kept talking back and forth, along with my pain management team. The medicine that the pain management team put me on for sleep, can cause heart problems. But when I first started having heart problems in November, I stopped the sleep medicine for a couple weeks to see if that was the problem. I still had the heart problems so I started taking the sleep medicine again because it is the only thing that helps me sleep.

So while I was in the hospital, there was a lot of communication with so many groups of people causing confusion. The on call cardiologist wants me to stop my sleep medicine. The pain team doesn't want me to stop it because they know that I have to have it to sleep. The on call doctor started me on another beta blocker. Remember how I said I wasn't allowed to be on beta blockers anymore? Well this was our only choice so I started another one. Again, they assured us that I wouldn't react. They also told me to get off my sleep medicine...

Fast forward to Thursday. I could tell that my blood pressure was so low. We ignored it. Friday, we talked to my doctor in Nevada. He has been uncomfortable having me on a beta blocker because he knows my low blood pressure problem. He told us we need to get a blood pressure and heart monitor. So yesterday morning, when I took my blood pressure, we knew it wasn't good. When my blood pressure is 90/68 or so, the nurses and doctors comment on it and freak out a little since my heart rate is so high and my blood pressure is so low. Yesterday morning my blood pressure was 78/53. No wonder I felt worse than normal. Through out the day I kept checking it and it would go lower than that. I felt so bad yesterday to the point of crying all day long. Not good at all. I was really scared so we called the on call cardiologist again and he said to stop the beta blocker.

On Wednesday I am actually seeing my cardiologist so they said to just see what he would say. So we have no idea what the plan will be now. I didn't get to go to church today which makes me mad. Church is the one thing that I get to go to every week. My blood pressure is higher than it was yesterday, but still low, and my pulse is higher than yesterday. It should be an interesting week...

"I'll never forget the trouble, the utter lostness,

the taste of ashes, the poison I've swallowed.

I remember it all—oh, how well I remember—

the feeling of hitting the bottom.

But there's one other thing I remember,

and remembering, I keep a grip on hope:

22-24God's loyal love couldn't have run out,

his merciful love couldn't have dried up.

They're created new every morning.

How great your faithfulness!

I'm sticking with God (I say it over and over).

He's all I've got left.

God proves to be good to the man who passionately waits,

to the woman who diligently seeks.

It's a good thing to quietly hope,

quietly hope for help from God.

It's a good thing when you're young

to stick it out through the hard times.

When life is heavy and hard to take,

go off by yourself. Enter the silence.

Bow in prayer. Don't ask questions:

Wait for hope to appear.

Don't run from trouble. Take it full-face.

The "worst" is never the worst.

Why? Because the Master won't ever

walk out and fail to return.

If he works severely, he also works tenderly.

His stockpiles of loyal love are immense.

He takes no pleasure in making life hard,

in throwing roadblocks in the way" Lamentations 3:19-33 (the message)

The Museum - My Help Comes From The Lord

"When sorrows come and hope seems gone

You're the rock I rest upon

When waters rise and I can't breathe

You're the love that rescues me

Out of the darkness I lift up my eyes

Unto the hills I feel my faith rise

Maker of heaven, giver of life

You are my strength my song in the night My refuge my shelter Now and forevermore My help comes from the Lord

When I'm broken scarred by sin

Death gives way to life again

When I suffer when I doubt

In you I'm free in you I'm found

Maker of heaven, giver of life

You are my strength

You're my refuge

Now and forevermore"

Psalm 23 and update

There is not much to report. Just the normal stuff. Over the weekend I starting eating more. That morphine really took me down. I started back on all my medicines and shots. I'm still doing IVs at home too. Yesterday I had a bad reaction to the medicines. It's good to have a reaction cause it means the medicines are working, but you have to make sure it doesn't get too bad. I had a horrible migraine and eye twitching that made the room shake. I've never had the eye twitching so that was weird! I have not been doing too much because I'm still weak. I've just been relaxing at home.

I did get to go to the Bible study this week! I love it so much!! We have done a few things since I have posted. One this is called examine. You think back on your day. You look back and see where God would push the pause button to tell you something. That is hard to think about actually. Then you think about how you handled different things through out your day. This is such a good exercise. You are supposed to write all the examine in your journal.

I don't remember what the one we did Monday is called. For that one, you read a scripture or scriptures at least 3 times out loud. You notice what phrase God wants you to focus on. After you have your phrase, that is what you repeat all day. It should be what you focus on all day long. On Monday, Phil read Psalm 23 to us.

After a while to reflect, we had a time of quietness where anyone could share the phrase that they felt God was showing them.

Every week we end with a prayer that is open to anyone. There is lots of silence during the prayer. But at any time, anyone can say anything to God. Usually it is a thanks, asking God to help them in specific areas in their life, or requests for others. Everyone that I talk to says this is one of their favorite parts of the Bible study. You get to hear what God is doing in people's lives. It's so honest. You get to hear what people specifically need to work on in their lives. A lot of people use scripture in their prayer. For example, like in Psalm 23 it says "He restores my soul". So during the prayer people would say "Lord please restore my soul".

I love that kind of prayer. It's so encouraging to be a part of that.

"The LORD is my shepherd, I shall not be in want.
He makes me lie down in green pastures,
he leads me beside quiet waters,

he restores my soul.
He guides me in paths of righteousness
for his name's sake.

Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD"

Psalm 23

Heart update and father/daughter luau

We have talked to so many doctors the past couple days. I am having heart arrhythmia's which is not good. They told us that the problems I am having could be the rare side effects from medicines. 99.9% of people can tolerate every medicine. I am the 1% who has every side effect listed plus the rare serious ones. How did I get so lucky? Because of this, doctors are scared to put me on any pharmaceutical meds. I did start another beta blocker when I got out of the hospital Wednesday. The cardiologist and pain doctor talked and decided that I need to slowly wean off of my sleep medicine. The pain doctor really doesn't want me to get off of the sleep medicine because they know how bad it is if I don't take it. We'll see what happens.

My cardiologist has been talking to the on call cardiologist who worked with me in the hospital. They said that until we get the palpitations stopped, it is going to be painful. There is no way around that.

The main problem that we are trying to figure out is why is my heart not working properly. The pain doctor says it's from Lyme but the cardiologist won't say that for sure. They think there might be something else wrong. He has to rule out everything before he says it's Lyme. My doctor in Nevada says they need to figure out soon because this has been stretched out since October.

That is where we are right now. I'm not sure what is next. I've been really out of it from the nausea and meds. I'm so weak still and haven't been able to eat much.

Last night at church it was the father/daughter luau. I actually went! My mom did my hair and makeup since I'm ex hasted and weak. They had dinner which didn't go so well. I ate green beans and that is all. All the food made me more nauseous. But it was fun! We played games and just hung out.

I have been sleeping a lot lately. Monday and Tuesday night I was in the hospital which means I didn't sleep much. Hopefully I will get stronger soon and be able to eat again.

Here are some pictures from the luau!

back in the hospital

Yesterday was a really really hard day. My heart started skipping beats again around 3 pm yesterday. Then the horrible chest pain started. I could take it for a while. Around 5 pm I was in tons of pain. I think I cried from then on until 1 or 2 am this morning. My parents gave me Loritab at 8 last night but that did nothing. We called the doctor again and he said if I wasn't better to go back to the hospital.

So my dad and I made our familiar trip to the hospital. We got to the hospital around 11 pm I think. I'm not sure exactly.

They took me to triage and then immediately took me back to my room. In Childrens the ER, they mostly have rooms separated by curtains. Last night they actually took me to a real room. They got me all hooked up and then the nurse who usually comes at the end of your stay to collect payment came in...we hadn't even seen the doctor yet. Several nurses kept coming in asking if we had seen the doctor yet. Apparently they got "busy" when I went to my room...but we saw no other people there. That's okay, we are used to waiting...once we waited as long as we could, we got mad. Not really mad, just frustrated mad.

Finally the doctor came. We explained everything and I think she got a little confused. Apparently she thought I needed an EKG and everything I got on Monday night. It was too late to tell her she was wrong...so the nurse comes in with the EKG machine. Again. We just had this the night before. The nurse doing the EKG was nice but I don't think she knew what she was doing. After another hour of waiting the doctor comes in and says well I talked to the cardiologist and he said you can go come. Long pause of silence...."so do you need anything?" umm actually YES I do thanks for asking. I came here for pain medicine.

"oh okay well I'll get you some morphine. Well we will have to start an IV to put the morphine in. Is that okay?"

YES that is OKAY! That is the whole reason I am here!

Okay, I am really hard on doctors. I've had so much experience that I think I'm a doctor. I know doctors have a reason for everything they do but come on people.

The nice/inexperienced nurse came back in.

"Do you want me to use your port or put an IV in your arms?"

I said, "wherever it is easiest for you. It really doesn't matter to me."

"Okay I will be right back then."

Apparently she went to Narnia and had no concept of time.

Finally she reappears!

She looks for a vein and me being the doctor I am, tell her where they are. But she doesn't care to listen. She finally finds one but it's on the arm that she can't reach because the bed is against the wall. She puts my bed in the middle of the room and goes to get another nurse to help her. By this time I told my dad that they should just give me the IV stuff and I can do it myself.

He didn't think that would be a good idea...

Now 2 nurses come in! It was quite the party. The pumped my bed up as high as it would go. I'm still not sure why...

When they are putting the needle in they always say okay big stick coming get ready.

It's really not that bad...until she decides to push the needle in further while putting the morphine in! Goodness! did you know you are not supposed to do that? Obviously not.

They put the pain medicine in and were done! It was around 4 am by then.

We waited a while longer then the let me go home.

When they give you such strong pain medicine, they are supposed to give you nausea medicine before because it will make you really sick. Did they give any to me? No.

I didn't realize how nauseous I was until I got up. I almost didn't make it to the car. The car ride home was really bad. When I got home I took nausea medicine and it helped a little. I'm still really nauseous though.

So that is what has been going on. Thank you so much for the prayers.

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.

Medicine and more medicine

I am on day 6 of the 190 day treatment plan I am starting. That's right, 6 and a half months of this. This is not the only only treatment I am doing though. That would be way too easy if I only did one kind of treatment...I wish I could do that!

This treatment is all natural things from plants in South America I think. Here's a schedule of what I'm doing right now.

30 Minutes before breakfast:

Banderol-5 drops

Burbur-10 drops

Magnesium-2 caps

Serrapeptase-1 cap

30 Minutes before lunch:

Parsley-10 drops

Pinella-10 drops

Samento-5 drops

Sparga-10 drops

Trace Minerals-30 drops

30 Minutes before dinner:

Banderol-6 drops

Burbur-10 drops

Mangesium-2 caps

Serrapeptase-1 cap

Bedtime:

Parsley-10 drops

Pinella-10 drops

Samento-6 drops

Sparga-10 drops

Banderol and Samento are the 2 that kill the Lyme bacteria. I started out on 1 drop a day because they cause herx reactions. Everyday I go up on 2 drops on both of those medicines.

So the drops increase as time goes on. Also, we start adding more medicines.

When I start having herx reactions, I can take 10 drops of the Burbur every 10 minutes. It helps some!

Yesterday I had a rough morning. I woke up and took the medicines. After I took a shower, I started coughing a lot. I couldn't stop and it was causing me to throw up. Since I didn't have any food in my stomach yet, I was dry heaving. It was horrible. I got to get out of the house all yesterday which was so great!!

I have to carry all these medicines around with me since I take them all through the day. Yesterday and today I have had a major headache and my legs hurt a lot. It's just reactions from the medicines.

Along with this treatment, I am starting shots and more pills. That is where the 40 pills a day comes from. I'm start Collagen and that will be 18 pills a day. So I've got a lot to keep up with!

Spiritual Disciplines

Monday night I went to a Bible study with the youth group. This Bible study is different than most. It's called Thirst and it is about spiritual disciplines. We learn different things to do, to help us actually grow closer to Christ. The room was lit by candles and the chairs where 2 feet apart so that we wouldn't sit close to anyone who would distract us. The first thing we did was solitude. There was some suggestion on what to do. The first one was just thinking of a word. One word that we would say over and over and over. It's completely normal to think of other things but when you do, you just think back to the word. Another suggestion was deep breathing. It is good to pick a phrase and on every word, either breathe in or out slowly. For example you would say while inhaling "be still and know" then exhaling "that I am God".

Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth." Psalm 46:10

The other suggestion was relaxing your whole body. First you notice your big toe. You understand that your toe is not doing anything, it is just there. Then you do that all the way until you get to your head. By that time you are completely relaxed. The whole goal of these exercises is to forget about reality. The goal is to become so focused on the word or phrase or just being there, that the room fades away. Obviously this is very hard to do. We were given 8 minutes to do this. I thought that it went by so fast! We were challenged to do this everyday because it is so important. Just like an athlete, we have to train. We can't go to our marathon (life) and expect something to happen just being we say we are a "runner"(a Christian). Without strict training (studying God's word, listening to God, knowing that He is always God) we will fail the race that we call life. But if we train like we should, we will see that God has a place for us in the marathon.

"Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.
Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever." 1 Corinthians 9:24-25

After we practiced solitude, we tried another discipline called simple prayer. We were reminded that God comes to us where we are in our lives. Simple prayer is just being honest with God about what is happening now. It's about praying the ordinary If I'm angry about something, I tell him by writing it in a simple prayer. If something is stressing me out, I write it down. If there is something so great, I write it. It's just writing simple things down, because God will meet us wherever we are and He cares about everything.

These are such good ways to hear God speaking to us, but these are so hard to actually do everyday. That is why they are called a discipline!

Lots of people came this week to Thirst and I can't wait for the weeks to come.