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"

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.

Quick update about the beta blocker and side effects!

Yesterday my family and I drove to Dallas for the day! We had dinner at our favorite restaurant, Pappadeaux! And of course my mom and I had to go to a few shops. Our excuse? Well dad, here is the reason. I am starting on lots of new medicines. So mom and I need new purses and bags to carry all my medicines and supplies!! Best excuse ever? I think so!

We left for Dallas around 1 yesterday afternoon! My cardiologist called when we were in the middle of no where so it was hard to hear him. My mom told him about all the side effects I'm having and he said that the medicine is causing that. Uhh DUH!! Thank you captain obvious! I'm so rude like that...it's the meds, except my family says I'm always like that...probably true!

He told me to stop taking the beta blocker! I'm so glad! He said that every beta blocker will cause those problems. So unless there is no other option, I won't be on beta blockers. He is starting me on a medicine that they give people with heart failure and just heart problems in general. I'm starting that tonight. We are praying that I can tolerate this medicine better.

It is so weird because I just stopped taking the beta blocker last night. Today my heart rate is back up to 130-140. It's amazing how fast it came back...I'm all shaky and jittery from it. Hopefully it will go back down soon!

We got home from Dallas around midnight last night. Now we are sitting at home watching the blizzard. We wore shorts and tee shirts yesterday and now we can't leave the house! It's crazy!!

I hope you are having a good weekend!

Beta Blockers

Quick update.

We talked to my Cardiologist today. He said that the problems with the muscles in my heart are caused by the tachycardia (fast heart beat). He is able to monitor my heart rate with the heart monitor that I'm wearing. My heart goes down to 70 beats per minute at night, but then during the day goes up to 140 even at resting. He is putting me on a beta blocker to see if that will help with the fast heart rate and muscles.

Please pray that I will be able to handle the beta blocker. Ever since I got sick I am so sensitive to everything. I can't even stay in our laundry room for more than 16 seconds because the smell of the soap makes me cough and I can't breathe. It's ridiculous.

He wants to keep monitoring my heart for a while to see if the beta blockers will help. So I get have to keep wearing the heart monitor...

Thanks for praying for this!

Well this is a bummer...I got new medical jewelry

There is a lot of information in this post. So towards the middle is the serious medical information. The first part is just pointless stuff!

Sunday night through Tuesday I had fever. I don't know why but I felt horrible. Thankfully I don't think I have fever anymore.

Yesterday we headed to the hospital for my Cardiologist appointment. We drove up saying this was the same building my Rhematologist was in. I went to him right before we found out I have Lyme. He diagnosed me with Fibromyalgia and put me on Cymbalta, Ambien CR, Lunesta, and some other strong medicines. I was 15 at the time and none of that is approved for anyone under 18. I started taking them anyway and I blacked out a few times from them. We called the emergency doctor and he told me to stop taking everything. That is when we threw all the medicines in the trash and knew this was not the right path to be on. I never went back to him.

So yesterday we valet parked and got in the elevators and ended up in the SAME place that my rhematologist was in. Thankfully my rhemetologist isn't there anymore...

It was weird being there again, especially since we never came back.

They took me to triage and took my vitals. It took at least 2 cuffs and 3 tries to find my blood pressure. The nurse asked if I always have trouble getting my blood pressure to read and I said yes. I also told her that my blood pressure is always 90/60. She was still determined to find out for herself. When it finally read it was pretty close to 90/60. It's kind of funny that I have to tell my nurses where my good veins are and what my blood pressure and heart rate are. I'm unique because usually if you have a high heart rate your blood pressure will be high too. Nope, not with me. My heart rate is always too high and my blood pressure is always super low. Nurses can't even count my heart rate because it's too fast. Thank goodness for machines that read it for you. At triage my heart rate was 132 bpm.

After all that she took me to my room and told me to change into the gown. Well that was a bummer because it was a little chilly. After I got my gown on, another nurse came in to do an EKG. I guess it's just standard procedure to do an EKG on everyone who comes in because I have had like 4 EKGs recently. My EKGs are always fine.

After that, the doctor finally came in! We went over my life story 900 times and he listened to my heart and all that fun stuff. His first question was, and I quote "so where did you get the Lyme from? Did you live or travel to the north?" I thought oh no! here we go again. Please don't make us have to be escorted out of the building by security. Just don't even go there. (just kidding we aren't that rude but it's come close a few times) He finally moved on and was okay.

-Medical Information-

We started talking and he told us a few years ago that another girl my age came to him with Lyme disease. Her heart was completely blocked from the Lyme so they immediately admitted her to the hospital and started her on antibiotics and steroids. I'm glad she got to the cardiologist fast so he was able to save her life. They caught her Lyme in stage 1 so they reversed the heart problems and she's fine!

From glancing at my echocardiogram, he saw that there is something wrong with the muscles in my heart. He is going to call us in a few days and update us on what he sees when he has a chance to look in detail on my test results.

He said I definitely have tachycardia. That just means that my heart is faster than normal. I think above 100 is diagnosed as tachycardia. Fast heart rate is normal for a Lyme patient but that doesn't mean we can just forget about it. The Lyme is definitely attacking my heart which can obviously cause serious problems.

The doctor said that we need to find out what is causing the fast heart and how the Lyme is attacking my heart. In the next couple of weeks he might put me on beta blockers. We first need to see what's going on with my heart structurally. So for now we are waiting on him to call and tell us what the plan is.

On the way to the hospital I told my mom that I was hoping I wouldn't have to wear a heart monitor for a couple days. Well lucky me, I get to wear one for a whole 30 days!!!

When the nurse told us I about ran away. But I was very polite and tried to contain myself. It's a really complicated thing and she taught us in 10 minutes.

There are four circular pads that go on my chest and stomach that have color coded wires. The wires connect to a monitor that is recording everything. There is also a huge cell phone that I have to keep with me at all times because the monitor sends the information through the cell phone to a computer. Someone is ALWAYS watching my heart from the computer and can contact me through the phone if there is a problem. I have to wear all this around my neck...pretty much like an adorable necklace. Try not to be jealous.

I have to charge the phone every few hours which is a little annoying because then I can't go anywhere because the phone is plugged in to the wall. The only thing on the phone is a screen that shows a beating heart and where the wires go. Several times today I have set off alarms because the wires fall off or something like that. Also, if I feel dizzy, light headed, faint, chest pains, or anything like that, I push a button on the monitor and then on the phone i type in what symptom I am having. So at random unknown times the monitor and phone send off alarms. If I have to submit a symptom, then that sets off alarms too. I'm not sure how this will work in public...

I think that is all we know right now. We were hoping for easy answers but we didn't get any. The doctor was very nice and helpful.

I hope you have a great weekend! I will update as soon as I know something. Thanks so much for the prayers!!

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

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!

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

Another New Doctor

Today I went to my primary care for some random things going on. My heart rate is way too high. My heart should be about 80 beats per minute but mine is from 130-150 beats per minute. So we discussed what could be causing it to be so high. I had an ekg at the doctor's office and it just showed that my heart was really fast..thanks doctor for telling me what I already knew. Anyway, he wants me to stop taking my Amitriptyline because a side effect can be Tachycardia, which means fast heart beat. I'm going to monitor my heart and see if it slows down over thanksgiving since I will be off the medicine. If it slows down, great! If not, we will be sent to a Cardiologist for more tests. Hopefully it will slow down!
My doctor wants me to go to an Endocrinologist. We need to see if my adrenals and thyroids are working or not. So that will make my 8th doctor that I am dealing with right now.

Next week is my 1 year mark of diagnosis and treatment so I'm making a video of my story that I will post on here next week!

I cried out, “I am slipping!”
but your unfailing love, O Lord, supported me.
When doubts filled my mind,
your comfort gave me renewed hope and cheer. Psalm 94:18-19 (NLT)

When I said, "My foot is slipping,"
your love, O LORD, supported me.
When anxiety was great within me,
your consolation brought joy to my soul. Psalm 94:18-19 (NIV)

I hope you have a great thanksgiving!! I'm thankful for all of you and your prayers!

A little worried...

I just got home from the sleep specialist. He was very nice and helpful! We went through my story and he diagnosed me with restless leg syndrome. I am sleeping longer, but it's not restful sleep. So he is putting me on Neurontin. It is really an anti-seizure medicine that changes chemicals in the body. It will hopefully help with sleep, restless leg, pain, and a few other problems. Once I get up to a dose that works for me, I will be taken of the Amitriptyline.
My blood pressure is always 90/72 or around there. My pulse is usually 100 which is really high. For the past month I can feel my pulse when I'm still and my pulse has been 120 or so. Today my pulse went from 145 to 130 and moved back and forth around a lot. The doctor got really scared. I thought he was going to send me to the hospital. He called my primary care doctor to tell him so we'll see what he does.
My lab results showed that something with my iron is low. He's putting me on iron pills. He said that it can upset your stomach which is bad because I'm already nauseous. So if makes me too sick he said I would be put in the hosptial and get IV iron. Hopefully it won't come that.

So please be praying that my heartrate is not serious and that I can stay out of the hosptial.