Sometimes It’s Ok to not be Ok…

I know you're not

The past month and a half has been one of the more difficult times that I’ve faced in as long as I can remember. I feel as if my world has been turned upside down and inside out, and I have no control over my life. Why? My health has taken a severe turn for the worse. I feel like I’ve been sent back to a time that pre-dates the Neurostim implant. The implant that gave me my life back. The implant that provided me the courage to share my story: publishing a blog and putting it all out there; telling my story on the Fox news health segment; publishing my story in a medical publication; becoming a poster child for my Neurosurgeon.

The Neurostim is failing me right now. It’s as if a switch has been flipped rendering the implant useless in fighting the migraine pain. I’ve been the first to say that this surgery is not a cure. Whew…that’s an understatement! But I just don’t understand how things have taken such a drastic turn, without warning, overnight.

I’m terrified.

My current “life” is dealing with daily migraines. Severe pain. Anxiety. Depression. Hospitals. Doctors offices. WAITING ROOMS. Meds, meds and more meds. Medical bills. It’s all piling up on me, and is more than any one person should have to deal with. But I must. I have no choice. This is where I would generally discuss how I’m going to rise above and fight this battle with everything inside of me, no matter what it takes. But right now I just don’t have that in me. I feel so defeated.

There is no answer as to why this is happening. That terrifies me. So the focus is on HOW. How to improve my health and regain control over the pain. I’m “patiently” waiting for approval from my insurance company to have a revision of the Neurostim. The right temporal lead is not providing coverage in the area that I need to dull the pain. A small incision will be made providing my Neurosurgeon with access to the lead so he can move it to the correct position. Sounds easy enough. Sounds like it should work. Kinda’ explains the WHY, right?!?!

I believe that the revision is needed and will help me, but I fear that it won’t be enough. I fear that it won’t provide me relief. I fear that if it doesn’t work, that I will continue to live this life in constant pain. I FEAR.

It’s impossible to turn my mind off right now and not over analyze things. I’m terrified that I am putting too much faith in this revision surgery being the answer I’ve been looking for, with the possibility that it isn’t. I’m playing the “what if” game in my mind. Some thoughts are positive, but the negative thoughts seem to be taking over and winning.

So I’m throwing a pity party for myself. My favorite thing to do during these “parties” is to listen to music. I was listening to my soundtrack of pain playlist, and the song “Here Before” by the artist Lissie, really defines how I feel right now. It’s definitely not an anthem that I’m proud to say I relate to, but it defines my current reality.

At the end of the day, I guess it’s ok to NOT be OK…as long as I don’t give up, and find my way out of this storm, soon……………..


“Here Before”Lissie

Oh, what a gray and hopeless day
I’ve got a worried mind
The sun’s behind the clouds again
And so am I
I ask the sky
Tell me which way to go, how will I know to shine again?I’ve been here before, I’ve seen it all
And I can’t take no more, I mean it
I’ll goAnd this is the time, the time to change my life
Yeah these are the times reaching up to findA window out of doom and doubt
A remedy for agony, oh hush that shoutI’ve been here before, I’ve seen it all
And I can’t take no more, I mean it
I’ll go
You heard it all and more, heart beating too hardAnd these are the times, time to change my life
Yeah these are the times reaching up to findWhoa-oh-oh-oh
I took the wrong way home
I took the wrong way home
I took the wrong way home

I’ve been here before, I’ve seen it all
I can’t take no more, I mean it
I’ll go
What’s this screaming for?

And this is the time, the time to change my life
Yeah these are the times, reaching up to find
Reaching up to find
Reaching up to find
Reaching up
Reaching up
Reaching up


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