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"

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!

very sick...

Saturday night I started my new heart medicine. Sunday morning I woke up with no voice and bad chest pains. More things kept going wrong as the day went on. My throat and ears starting hurting so badly. It felt like there was fluid in my lungs and it hurt to breathe. Because of the snow, church was held at 3pm. So we just hung out at home until then. Since I couldn't talk, I used my itouch to communicate. I spelled out words on it and then passed it to my parents. I also used a lot of pointing and hand motions. I wasn't doing well at all. I asked if I could go to church so they agreed to let me go and then planned on taking me to the after hours clinic. When we got to church I realized how sick I was. This happens a lot. I think I am feeling okay at home because I'm not around people or doing anything that takes much energy. Then when I actually leave my house I realize how tired I am.

I was sitting with my friends at church and I knew I couldn't make it much longer. I texted my parents (yes I texted them during church...don't tell.) and told them I needed to leave. So I watched for them to get up and leave the auditorium and then I left too. We got to the after hours clinic and filled out the paper work. They give you a couple papers of symptoms to check off. Most people take like 10 minutes to fill this out. I take less then 2 minutes because I have it memorized. That saves us a lot of time!

They took me back to check my vitals. My blood pressure was a little high for me, which means in the normal range for normal people. My pulse was 144 bpm. I could have told them that because when your heart rate is that high, you definitely feel it. My oxygen was 100%!

The nurse took us to my room and started asking me lots of routine questions. It's a little hard to communicate when you can't talk. By then I could whisper but it hurt so bad and took so much energy.

The doctor came in and listened to my lungs and looked in my ears. He said my ears were fine! He definitely heard something in my chest. He explained that with young people, their lungs can work well and their oxygen level can be 100% but they could still have pneumonia or fluid in their lungs so I had some chest xrays. After he saw it he said that my lungs looked okay. There was a little fluid but not much. He also said that my colon is swollen or something and it is pressing against my lungs which is causing a lot of pain. But he didn't say anything else about that so we guess it's fine.

This was his advice. "lets watch this very closely because this could be the beginning of pneumonia so call me if you get worse." uhh thank you? I was really upset from all that. Really really upset. He did nothing for me.

I feel horrible. I'm weak, I have fever, my chest hurts, my throat hurts to the point that I really can't eat, and I still can't talk. I can whisper but it hurts a lot.

He said it could be caused by the new heart medicine and that my body might just take a while to get used to it. So we don't really know anything. We don't think it's the heart medicine though.

Last night I was up a lot because of my throat. Today I have done nothing but lay down and catch up on some tv shows. But it's not even fun to the watch tv because I feel terrible. My grandparents brought me a shake so I had that and it was really good!

The past 24 hours, I have sucked on cinnamon candy non stop to help my throat. I am probably getting addicted and I don't even care. I need it to survive.

Hopefully the next few days will be better and not worse.

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!

Side effects just stink

Side effects really stink. I'm tired of all these side effects. I'm tired of having to take medicine for the side effects caused by another medicine. This beta blocker medicine is making me CRAZY. I am not myself at all. I'm not in a good mood about anything and I can't control how I act. It's like I'm a completely different person. I am spastic sometimes and then suddenly I will just crash. I feel so weird... My mom called my cardiologist so we are waiting for him to call us back. I'm just not tolerating this medicine at all. The doctor should call us by tomorrow.

We got the okay from my Lyme doctor to resume treatments again. We really need to kill the Lyme so that it doesn't damage my heart or anything more than it has. So I am starting the new medicine that helps my joints. Guess how many pills I have to take a day? Okay I'll just tell you... Eighteen pills a day. That's right, eighteen a day. I'm starting back on all my other medicines too. That means that I'm going back to the 20 pills of supplements too. I'm also starting back on the butt shot everyday. There's a new medicine to kill the Lyme that comes in a liquid. I start with 1 drop a day because it is so strong. We are praying that I don't have bad herx reactions from the toxins from the bacteria. There are a few other liquids I will take.

I'm also still taking my heart medicine and sleep medicine and sometimes pain medicine.

So in one day I will take over 40 pills, a couple shots, liquid medicines, and an iv.

Good thing I am a pro at swallowing pills.

That's a quick update about everything. We are praying that we will hear from my cardiologist tomorrow and can come up with a new plan.

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!!