An Existence I Can No Longer Have

Master Yoda was right.

“Fear is the path to the dark side.

Fear leads to anger.

Anger leads to hate.

Hate leads to suffering.”

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Well, give me my red lightsaber now.

I’ve feared for the past year since I went on medical leave (on June 10, 2016) that this day would come. That my recovery wouldn’t happen fast enough for the almighty powers that be and that my position would be posted, Continue reading “An Existence I Can No Longer Have”

Trapped Inside My Own Mind

via Daily Prompt: Heard

What do you do when you feel you’re not being heard?

By family?

By friends?

By God?

I don’t think it’s their fault.

It’s not their fault.

It’s my fault.

My mind is such a foggy mess right now. It’s like there’s a short somewhere, or a connection that’s gone bad.

I have all these things I want to say, I need to say, but I can’t think of what they are. I feel as though I’m going to explode with thoughts that can’t even come to fruition. Continue reading “Trapped Inside My Own Mind”

I’m a Little POTSie…

Sometimes the only way to get the best care is to take things into your own hands. I’ve done it before, and now I’ve had to do it again. But I’m glad I did.

Dr. J had told me to call his office about a week after my testing that occurred on January 11th and January 13th to talk to a nurse about my results. So I called on Thursday the 19th. They said they’d call me back in a few days. Nothing. So I called again Monday the 23rd. The said to give it “one more day.” Nothing. I sent a MyChart message Wednesday politely demanding the results be released and for someone to call me to discuss them. Last Thursday night most of my test results were released to MyChart, but with no explanation, so I had no idea what they meant. So I called the office Friday morning to see what the heck was going on. Continue reading “I’m a Little POTSie…”

A Day With Dysautonomia

What’s it like to have dysautonomia? Let me take you through a day in my compression socks so you have some idea of what I fight through on a daily basis.

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Heart rate after brushing teeth

Imagine it’s a new day. You wake up and get out of bed. You do your business and then brush your teeth (with an electric toothbrush, by the way.) As you’re doing this, you place two of your fingers over your carotid artery. Your heart rate is rapid, probably in the 120s, maybe pushing 130. And all you’re doing is standing up, brushing your teeth. Continue reading “A Day With Dysautonomia”

Brain Fog

There are a lot of things I hate about having dysautonomia. The dizziness, the lightheadedness, the tachycardia, the salt, the fluids, the compression socks (even though mine are cute), the occasional need for a wheelchair in public that makes people think I’m a crazy faker because sometimes I can walk and sometimes I can’t (because people don’t understand invisible disabilities.)

But one of the main things I hate about dysautonomia is part of the reason I have been writing less and less as time goes on, and why what I have written hasn’t exactly been stellar.

Brain fog.

img_0886This is not just a getting-older-I-forgot-where-I-put-my-keys kind of thing. Or when my husband forgets where he put anything and everything because he’s a man (and somehow I know where everything is, because I’m a woman.) But I am not normally a forgetful person. I remember things I have no business remembering (ask my childhood friend Jenny.)

What I’m talking about is actually quite disturbing to me. Continue reading “Brain Fog”

Modifications and Coping

Finally, a post that’s not about dry medical procedures and appointments! I’m not expecting this post to be much of anything, though. I just need an outlet to get my thoughts together.

Since my appointment with Dr. J the first week of January, I’ve made the specified modifications he asked me to do to help me feel better. But it’s not all physical things I’m dealing with. My emotions are all over the place right now, going from angry to sad to…nothing, I guess. So how am I doing, really? Continue reading “Modifications and Coping”

The Light

Like an unsung melody
The truth is waiting there for you to find it
It’s not a blight, but a remedy
A clear reminder of how it began
Deep inside your memory
Turned away as you struggled to find it
You heard the call as you walked away
A voice of calm from within the silence
And for what seemed an eternity
You’re waiting, hoping it would call out again
You heard the shadow reckoning
Then your fears seemed to keep you blinded
You held your guard as you walked away

When you think all is forsaken
Listen to me now (all is not forsaken)
You need never feel broken again
Sometimes darkness can show you the light

An unforgivable tragedy
The answer isn’t where you think you’d find it
Prepare yourself for the reckoning
For when your world seems to crumble again
Don’t be afraid, don’t turn away
You’re the one who can redefine it
Don’t let hope become a memory
Let the shadow permeate your mind and
Reveal the thoughts that were tucked away
So that the door can be opened again
Within your darkest memories
Lies the answer if you dare to find it
Don’t let hope become a memory

When you think all is forsaken
Listen to me now (all is not forsaken)
You need never feel broken again
Sometimes darkness can show you the light

Sickening, weakening
Don’t let another somber pariah consume your soul
You need strengthening, toughening
It takes an inner dark to rekindle the fire burning in you
Ignite the fire within you

When you think all is forsaken
Listen to me now (all is not forsaken)
You need never feel broken again
Sometimes darkness can show you the light

Don’t ignore, listen to me now (all is not forsaken)
You need never feel broken again
Sometimes darkness
Can show you the light…

“The Light” (Disturbed)

I just cannot deal today. I am so completely done with everything that my body is doing to me. I’ve had it up to here with this dysautonomia thing.

Haven’t I suffered enough? I just want this to be over. I want to be normal again, or as close to normal as I can be. I want a quality of life that doesn’t involve being stuck on the couch all day because if I stand up, my body doesn’t know how to compensate and I have to sit or lay down right away to avoid being involuntarily returned to a flat position.

I HATE MY BODY. I HATE MY LIFE. I JUST WANT IT TO BE OVER. (Although as an FYI, you really don’t need to worry about me, I’m not even thinking about doing anything harmful.)

I have this song on repeat because it so incredibly encompasses everything right now. It really is a beautiful song for being a bit heavy. Please check out the music video. It does an amazing job of depicting the lyrics of the song through the scenes it portrays, especially with medical stuff being involved. (Beware of some graphic medical injury [burns]. I like the music video better because it so beautifully demonstrates the lyrics.) Never thought a secular song could do something like this.

I’m already in darkness. I’m just waiting for The Light…

💛ribbonrx