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)

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!!