Answers

Relieved. Overwhelmed. Hopeful. Thankful. Optimistic. Cautious. Scared. Vindicated. Angry. Shocked. Apprehensive. Anxious. Joyful. 

These are just a few of the things running through my head today after an intense week of testing. 

At the end of the day, my heart is just full of so much praise because I got exactly what I prayed all week for - ANSWERS. 

Tuesday as I waited for my lumbar puncture I prayed a weird prayer - one for abnormal test results That prayer wasn’t answered that day, but it was two days later after my fifth MRI.

Turns out I should probably buy a lottery ticket because I officially have a confirmed spontaneous CSF leak. Statistically, only 5 in 100,000 people will experience this.

This week turned intense fast after my Lumbar puncture on Tuesday - my headache and nausea worsened dramatically and by Thursday I could hardly see straight. Then came the MRI results - a leak, plain as day, in a completely different spot than the LP - meaning it’s been there this whole.damn.time.

Thankfully, my ED coworkers treated me promptly and compassionately and I was able to get an emergent, unplanned blood patch in IR Thursday evening. It’s no exaggeration when I say I wouldn’t wish that on my worst enemy - it was by far the hardest, most painful thing I’ve ever been asked to endure. It’s day 4 and I’m just beginning to walk more normally again

So the good news? We have an answer, and (hopefully) a FIX. The bad news? The fix requires at least one more intense blood patch - and possibly others down the line. The treatment plan has not yet been fully laid out and I’ll be at the mercy of the one physician in Phoenix who treats spontaneous leaks

Thank you - to those who have prayed with me. To those who have cried out to the Lord on my behalf. To those who have had the patience to read through my lengthy updates. To those who have sat with me in the ER, at appointments, in waiting rooms, at home on the couch, and during endless procedures. Thank you to those who continued to help me push for answers when I wanted so badly to give up. Thank you to those who believed and validated me every time I insisted that something was wrong. & Thank you to my ED family who has been beyond gracious, supportive, and understanding while I have straddled the line between patient and employee.

The road ahead scares me as I know it will be anything but easy, but I’m so glad to even HAVE a road and a clear direction to move in.

Looks like I have one extra thing to be thankful for this Thanksgiving.

“I gotta feeling the darkness won’t last very long…
so we will sing, we will dance,

till the earth echoes the heavens,

sing His praise till we see the other side”

Soon You’ll Get Better

To the 70 million Dysautonomia warriors worldwide:

I see you.
I see the endless struggles that you face.
I see the physical pain you’ve endured, and the ways in which it has burdened your soul.
I see the look of defeat when you leave the doctor’s office after being told “it’s all in your head”.
I see the way you watch your friends do things you no longer can, longing to be able to participate.
I see the frustration in your eyes when you take another pill, hook up to another infusion, or get wheeled back for another procedure.
I see you wondering if this is forever, wondering if “normal” even exists anymore.
I see the tears you cry in private, the words of others threatening to break you down to dust.
I see you hiding your bruises and scars in fear of what others might think if you’re truly seen for who you are.

I see all of this when I look at you.
But I also see this when I look in the mirror.

Warrior- hear me this:

You may be bruised, but you are also BRAVE. Please, Don’t be scared to be seen. Don’t let them break you down to dust. Know that there is a place for us, for a e are glorious

You are seen. You are valid. You are loved. You are worthy even on the days you don’t believe it .

And don’t ever forget-

Soon you’ll get better. Cause you have to.

xoxo,

Sarah