Surviving the Storm

be strongWhew, the past 1o days have been pure hell. Constant high level migraine pain and an abdominal virus. Today is the first day that I feel like myself again, but I’m taking it easy. The natural instinct is to get right back into my normal routine, but I know better as this can back fire and put me right back where I started. The specialists have no idea why I was so sick and why I so abruptly experienced this migraine that would not break. While I appreciate their honesty, it makes me terrified for the next episode, as I know there will be others.

Let’s see here…this episode entailed:

– 3 ER visits for IV infusion

– Neuro visit for IV Infusion

– Primary Care doc visit and CT scan at the hospital for abdomen to rule out appendix or kidney stones

– 2 visits to Neurosurgeon for Neurostim reprogramming and X-ray to ensure the leads have not moved

– Addition of new meds including a mega dose of prednisone steroid taper and an increase in dosage of other meds

– Etc. I’m sure I’m missing something, but the bottom line is I was at the doctor nearly every day and ALL I wanted was pain relief and my bed, and it was a battle to get to this point.

I feel emotional right now as I look back on the past 10 days. When you make it through the storm, and stop to really think about all that you’ve endured, it’s impossible not to. I used to live like this on a near daily basis. HOW DID I DO IT? It makes me so sad for others that are still in this constant battle and fight. I was a shell of a person once again, and my alter ego resurfaced, my “pain self”. I thought I had buried her, but at times like this she makes her presence known. I avoided phone calls and I just wanted to be alone and sink into the darkness.  But my support system wouldn’t let me do it, and I’m so grateful to have them all in my life, (you know who you are ;)).

I was listening to music today, and came across this song that seemed so fitting for this moment. A link to the song is below on YouTube, along with the lyrics. I think they speak for themselves.

“The Others” – by Birds of Tokyo

I’m losing days
Living life in cinematic haze
Moving through it frame by frame
And I’m trying not to notice
That I’m never in the momentI’ll let it pass
A numbing sense
Disguised by sleight of hand
Better thoughts are built on air
And they’ll crumble if I hold them
And it won’t last in the moment

Wait, am I about to lose myself again
In between these walls so torn and thin
Everything is seen for what it is

Why don’t I feel like all the others
Why don’t I feel like all the others
Just like the broken I have suffered
So why don’t I feel like all the others

I don’t recall
What it’s like to walk down vacant halls
What if I could turn it off
If I wake up from this coma
Will I wake up in the moment

I wrestle fate
Knowing life will win this great debate
Chance will have the final say
And I wonder for a moment
Will I break down
When it’s over

Wait, am I about to lose myself again
In between these walls so torn and thin
Everything is seen for what it is

Why don’t I feel like all the others
Why don’t I feel like all the others
Just like the broken I have suffered
So why don’t I feel like all the others
All the others
All the others
All the others
All the others


For those of you with the stim that experience difficulty, I would advise the following:

  • Contact your surgeon and med rep ASAP for reprogramming. It may take several attempts to get it right. If the first time is unsuccessful, try working with a different med rep. They all have their own style and ideas for how to help relieve your pain
  • Don’t lose hope. If the stim has been successful in the past, it will again, don’t give up and keep trying to adjust the stimulation until the nerves respond

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