Thy will be done.

It’s hard to think that God planned this. The pain.  That he looked at me, and said, “I’m giving her this. I’m giving her all these strange heart conditions that doctors don’t understand, but is okay because she can handle it”.  Some days I just want to scream at God. Some days I want to cry to God. Most days, I don’t know how to handle it.  I don’t know whether to be mad or sad.  I have a love/hate relationship with this time of the year. December will mark 3 years since my first diagnosis.  I remember sitting in the small room, thinking, “this is no big deal”.  Little did I know, my life was never going to be the same.  Many tests, four diagnosis, a surgery, and a permanent heart monitor would soon be coming my way.  Never did I know that a 24 hour monitor that I thought was simply annoying, because “I can’t have anything wrong with my heart”, would lead to this.  To this blog. To the life I have now. To the friends I’ve made. To the relationship I have with God. To everything my life is now.  As much as I hate my health being like […]

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In the eye of the storm.

I sometimes don’t talk about it, so some people think that I’m okay, or that I’m better. To be honest, I don’t know if I’ll ever know what better feels like. And that scares me. But, at the same time, I am getting used to feeling broken. To feeling like I’m stuck in this hole, and I’ll never get out of it. People have questions. They’re curious.  But, explaining it is hard. Doctors can barely explain, so how can I? It’s like living in a cloud. Living in pain.  The other day, for the first time ever, I started blacking out, and had somewhat of a convulsion in the middle. I pushed it to the side, like that was normal- but it’s not.  And that terrifies me. People either act like I’m perfectly fine, or I’m dying. There’s no in-between to others. I’m in the middle somewhere. I’m not fine, but I’m also not dying. But Dysautonomia, and a heart condition did take away my life.   All I want is to go back. Go back to a time when I didn’t know what constant pain felt like. I didn’t know what a life spinning out of control was like. I […]

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They are beyond grateful.

Donating blood, organs, or anything else has always fascinated me, especially after struggling with my heart. I have a condition that no one can donate something so simply, and help me get better. If they could, it would be amazing- but no one can. So I think of it in that perspective. I’d want someone to do this to help my condition, so if I can, I will do whatever I can to help someone else with whatever their needs may be. I used to absolutely love donating blood- just knowing that I could help someone, somewhere, survive. It was actually me donating blood that we noticed I had an extremely high HR. I was 16. Two years later I was first diagnosed. I was 18.  Five years later I am still being diagnosed. I am now 21.  If I never would have given blood five years ago, in the school gym, I never would have been alerted to my heart rate, which is now showing to cause a lot of problems. So in a way, donating blood, to save someone else, kinda saved me from having my heart continuing to be damaged unknowingly. It helped two people. Myself, and some […]

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A Letter to God From The Girl That Desperately Wants to be Healthy.

God,  I hate this. I used to say that I hated you because of unanswered prayers. I’m sorry- I don’t hate you. I just hate this. The pain. The unanswered tests. The unanswered prayers. The longing to be healthy. I never used to despise medication until I relied on it every day. I never used to want to cry with medication changes. Now that I take three medications, 5 1/2 pills, a day, just to create a [hopefully] well beating heart that day, is exhausting.  It might not seem bad to others, but every morning, and every night I have to take pills to correct an organ that should be able to work properly.  People tell me to just not think about it, and not to focus on it. How can I? When the first thing I have to think about in the morning and the last thing I have to think about at night is take your medicine. So my day begins and ends with- your heart is broken. Literally.  I don’t want a broken heart, God.  I don’t want this. I don’t know what your plans are, but I’m getting to the point I can’t do this on my own […]

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Even if.

Many days I ask myself what I will do if this never goes away. What will happen if this is the plan God has for my life? Just one diagnosis after another, without relief.  Some days I think about my life, and wonder how it could get worse. How much more could I handle?  I hate answering the phone when the nurse calls, but at the same time, I know what to expect.  Yesterday I had another phone call.  Another diagnosis.  Another thing to add to my list.  Another thing to make life even more difficult.  Another thing that is another answer.  I hate to say that I’m slowly getting used to this. I’m not sure how to explain it, but it’s a numb feeling. Slowly getting used to all these doctor appointments. Slowly getting used to increasing medications, and changing medications.  Slowly getting used to my life being controlled my medicine. Slowly getting used to my prayers never getting answered. Slowly getting used to the healing never coming.  And that’s hard to admit. But, I am. I have to live with this daily, so I had to get used to the fact that I might not ever be healed. My […]

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I want to be labeled as healthy.

7 years ago I made the decision to become a vegetarian. It was an innocent decision that lasted for a few years that way. Then it slowly started to become my excuse.  My excuse to not have to eat much. My excuse I could use when I wanted to skip a meal. “Oh, there’s nothing here I can eat“ My excuse to eat as little as possible.  Vegetarianism can be healthy. For me, it wasn’t about a lifestyle change or better eating habits- it was a way to hide the fact that I hated my body. It was the excuse that people would believe when I wouldn’t eat.  Vegetarianism is also a diet. A diet that you can use to constrict food. It limits the amount of food options, and most the time it even completely eliminates any food options depending on where you are.  It also creates a sense of control. You are able to control something. Even something as simple as food, it’s control.  For me, vegetarianism was a way to restrict my food options, and have some control over my life when my heart was getting worse. Meat slowly became a fear food.  Over the past few […]

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I am not okay- yet.

Today started out not so good. Long story short, I broke down in tears in the bathroom (even though I shed a few at my desk). For the first time I realized how much this was affecting me, and how I can no longer hide it.  I never like to tell people how much this is affecting me. No one knows how bad it really is. Not my family, my friends, or even this blog. People will tell me, I’m so sorry, I hope you get better.  All I can think is- if they only knew.  If they only knew that what they see is a front. What they see is the me I present. That the I’m Fine probably means Today was really hard, and I’m in a lot of pain but I’m here.  I smile a lot, even when I’m not feeling good. I don’t feel good about 99% of the time, and that’s not an exaggeration. I don’t even remember what good, or normal feels like.  Today I realized how hard it truly is, to put on a face of I’m okay. I mean, my slogan on this blog is it’s okay to not be okay …. yet, I am having a hard time […]

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200.

For the first time in a really long time I am okay.  I went to yet another appointment last Friday. I was somewhere between ‘dreading it’ and ‘hopeful’. I left actually feeling okay about it all, which is a first. Like most appointments, I was put on more medication. But like most appointments, I was really hoping for something different. I am so tired of taking medications to “fix” the problem when it doesn’t fix anything. He also decided that it’s time to see a neurologist. Another doctor added to my lovely list. Yet I am praying another set of opinions and eyes will find the cause to it all.  But, I also was praying that he didn’t suggest another procedure. After the last one, I am really not looking forward to anything like that again. Obviously if it meant I’d be better, I’d do it in a heartbeat.  So I guess if I am not ready for another procedure, then I’ll have to settle with medications for now and another doctor.  He told me that my heart has gone over 200 beats a minute… twice.  I honestly thought he was joking. Until now, the highest has been 180. I’ve […]

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One day.

The last few weeks I’ve felt okay- a lot better than usual. I still didn’t feel 100% better, but a little better is enough for me. I stopped myself, and reflected on how I hadn’t had a bad episode in a few weeks, and I was happy. Because like I said, a little better has always been enough.  And then it came- a bad episode.  Although the episodes are painful, I hate them for another reason. I hate them because people see me as not being okay. I do my best, and I’ve never allowed anyone to see what it’s really like. I smile, and tell them I’m fine.  But the episodes are scary.  They are scary because I am unsure of what will happen. Unsure how much worse it’ll be than the last. Scary because it’s proof that this is real, and this isn’t normal. Scary because it’s a reminder that I’m not okay.  Someone asked me today, “so what exactly is wrong?” I laughed because I don’t really know.  For the ones that read these posts and are curious, below is the best explanation of what’s going on. My heart beats really fast (tachycardia). It does it while […]

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Some hope.

It’s not the outcome I wanted. I wanted to walk in those hospital doors with a misbehaving Herald (my heart is such a big part of my life, he deserved a name, right?! LOL), and walk out with a well-behaved Herald. Well that didn’t happen. I left with a tiny bit of hope implanted in my chest (literally). I was given a permanent heart monitor (linq recorder), which I will wear up to three years- until they find a cause for my heart’s rapid beating. Although it’s not the hope I was hoping for, it’s something. Usually after every disappointing appointment, I would leave questioning God. I would get mad at Him for not providing answers. I woke up from my first procedure, and when I asked for the results (hoping to be told they were able to fix it), I was told the opposite, and I tried to hold in the tears, but I couldn’t. I cried as they hooked and unhooked wires. Each nurse that walked in asked if I was okay, and each time I lied. Each time I told them I was fine, when I knew deep down I was disappointed again. Finally, another nurse asked […]

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