Category Archives: My Journey (health)

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Holding on to Hope.

A few days ago I had a successful ablation (a procedure that is used to scar small areas in your heart that may be causing arrhythmias). I was so happy to finally {hopefully} be able to have a normal life. 

And then it happened yesterday: the beginning of another blackout. 

I was heartbroken all over again. I was on the verge of crying, and just wanted to go hide in my room, and lock everyone out. I have experienced a lot of high heart rates, a lot more than I had been recently, which scares me even more. It was suppose to be successful, yet I’m experiencing more episodes. 

I am trying to hold on to the hope that I’m still in recovery, and this isn’t permanent. 

I have been asked so many times this past week, “how are you doing?” – how am I suppose to respond? I don’t want anyone to pity me. I don’t want to see the disappointment on someones face when I’m still not feeling okay after a successful procedure. I already have enough disappointment in me, I don’t want anymore added. 

All I can do is pray. I am so lost. I don’t understand why I’m still having episodes with a successful procedure. But, I’m doing the only thing I know to do: trust God. 

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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 this, if I wasn’t diagnosed, my life would be so different. And somedays I wish it was different, because this pain is so much. It’s definitely taking it’s toll on me. But I’m done fighting it. 

I’m done fighting. I’m having a second procedure in a week, and that’s my last treatment. I’m done with medications. I’m done fighting to find a better me. Because, this is me. This is my life, and maybe it’s time I stop fighting it. Maybe it’s time I accept this. Accept that God gave me this, and it’s my duty to use it, in whatever way He wants me to. Like writing this blog, and spreading awareness for the Invisible Illness community. For shining some hope to those that are fighting this fight too. Maybe God’s plan is bigger than I ever knew. Maybe it’s time I accept this plan, as painful as it is. God does have a plan. I just need to stop, and listen to Him. 

I don’t know what the future holds, but I’m ready to use this for His glory. Show His story, through mine. After all, my life doesn’t belong to me. It belongs to Him. 

I’m done fighting. I’m ready to finally live. 

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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.  

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August 2013 // A month before I started experiencing symptoms.

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 didn’t know what Dysautonomia, Postural Orthostatic Tachycardia Syndrome, Neurocardiogenic Syncope, Inappropriate Sinus Tachycardia, Atrial Tachycardia, or Supraventricular Tachycardia was. 

Now, I know it all too well. 

All I want is one day. One day where I don’t black out. One day where I’m not dizzy. One day where I am me again. The girl that was oblivious to what her life would be like just a short time later. The girl that had huge dreams, and now all I dream of is one day to feel better- whatever better is. 

To genuinely smile. To truly laugh. To breathe again. To be me. 

 

And I’m runnin’ out of faith
I see the future I picture slowly fade away
And when the tears of pain and heartache
Are pouring down my face
I find my peace in Jesus’ name
In the eye of the storm
You remain in control.
Even though I am frustrated that my life isn’t going the way I dreamed, and my faith is slowly fading, I try my hardest to hold on. To hold on to the hope God provides, that one day, even though this storm is heavy, and killing my spirit, that I’ll find safety upon the shore. 
One day, a cure will be found. And I wait for that day, with God by my side. 
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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 anymore. I try to smile. I try to act like it’s no big deal. I pretend that I am okay, because I have medication and You by my side, and maybe that’s all I need, but I just don’t want to do this anymore. God, I am done being strong. I am done acting like I’m okay. 

This isn’t fair. There has to be a cure out there somewhere. Better treatment options. Better pain management. Better days. 

I know you have a plan, and I don’t doubt that. I just wish you could help make it a little easier. Or show me the plan you have. Show me the purpose behind this broken heart. 

I desperately want to be healthy again. And I want to say with confidence- if this is the life you plan for me, that I’m okay with it- but I don’t know how to say that. I used to say it, but I’m so tired. 

So tired of telling people it’s okay, when they ask about it. Tired of telling people that, doctors have it under control, when obviously they don’t. Tired of smiling when people say, I hope you get to feeling better, when I will never be better, unless a cure/treatment is found. 

God, all I ask is if you won’t fix my heart, please make it easier to accept the struggles it brings. 

Sincerely, 

a girl that prays to be healthy one day. 

 

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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 heart might never beat normally. My heart might forever be broken. 

I’ve asked myself this: Will I be okay if I’m never better? 

Sometimes the answer is yes, and sometimes the answer is no. Some days I don’t know how to be happy living with this. 

But then some days I’m okay with being given this because it’s brought some positive things in my life, like a community, new friends, new experiences, and a new outlook on life. 

Right now I’m trying to remain positive, and even if I never find healing, believing in the good, and finding positivity through it all. 

 

 

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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 months I’ve been taking a lot of medications for my heart condition that happens to make me not have an appetite. So that doesn’t help either- but that I have no control over. This- I can control.  

When I’d have a bad day with my heart, skipping a meal was my release. It was how I’d handle the anger I had towards God for giving me this. It was how I handled the insecurities I had about my weight and my body. It was how I’d handle the depression. It was how I’d handle life.

A few months ago I decided I wanted to stop this unhealthy eating habit, or whatever you want to call it. If I had to deal with my body already failing, I didn’t want to be the reason it was failing even more. I decided that I was going to start eating meat again, stop using vegetarianism as a cover up for eating as little as possible, and get healthy. 

That idea lasted a few days and I literally couldn’t bring myself to end it. So I didn’t. 

Here I am, months later, into my 7th year of this, and I’m ready. 

With my health getting worse, I’ve decided that I need to do this. It isn’t easy. Probably going to be the hardest thing I’ve ever done. But I want to get to the healthy version of me.

I want to be happy, and healthy, and that’s what I am working to become.

I post this to say that I’m not perfect. I make mistakes and this was one of the biggest ones I’ve ever made. I truly believe this vegetarian lifestyle can be healthy, and who knows, I might decide to stay one and turn it into a healthy one. All I know is that I’m finally taking this into my own hands. Whether or not I eat meat isn’t a big deal honestly. The important thing is that I live a healthy lifestyle. 

I don’t know what I’m going to do in terms of this. I’m figuring it out along the way. The ache has just been getting stronger and stronger and I know it’s time to surrender it all. 

I’ve been scared of what people will think when they know about this. Which is why I haven’t opened up much. But I know no matter what I choose, I am strong enough to handle this. Whether on my own, or with support, because my God is with me every step of the way. 

I’ve struggled for years with not being enough. I am learning that I am. 

Size doesn’t define me.

A measuring tape doesn’t mean anything.

Food shouldn’t control me. 

I am strong enough to get through this. My goal isn’t to end this vegetarian lifestyle. It’s to become healthy again, vegetarian or not. I’m tired of labels. I don’t want to be labeled by the foods I choose to eat. If I decide to stay a vegetarian, I don’t want the label to define me. If I decide to eat meat, I don’t want to be defined by that either. 

I want to be labeled as healthy.