Let There Be Dark

Often, before Chiari suffers are diagnosed, we are told we are making the symptoms up.  There is nothing wrong.  Test after test comes back normal.  Doctors cannot find anything.  It must be all in our heads.

I was talking to my therapist on Tuesday and I was telling her how I was telling myself that I am making up the symptoms.  Maybe it's just denial that this is happening again.  I am not making up the big symptoms - my headaches and the shoulder discomfort - but the other ones.  The sensitivity to light especially.  But oh my god - the light!!!!!!!

The office I work in is not very large, it's pretty compact.  It's not the greatest building ever, but I don't have to pay for parking so I consider it the best place to work here in the 'Burgh. My favorite about this building is the windows.  The outside walls are waist to ceiling windows all around the building.  The amount of wonderful natural lighting could be amazing.

Could be.

No.  Instead the blinds are down and there are spaced out, approximately every 6' x 2' from each other, these 2' long three tube fluorescent lights.   I can't even begin to image what the wattage of these bulbs are, maybe 3000.  Are they trying to blind us???

For about two months I was wearing sunglasses at work.  The past two days, I've been wearing my scarves over my head as a bit of a shield. 

HR has the note to try and get at least the light above my desk removed.

Stutter

Stop. Ok, go.  

Wait, stop. Go go go.  STOP. 

It feels like my heart keeps stuttering and going and each time it stutters I have to take a breath but there is no room for that breath. 

And I have a headache. 

'Splain. No. Sum up.

I have a headache today.

But that's like saying the sky is blue, my hair is brown, or boys drools. It is what it is.

What makes today's headache so special is that it's rating would only be a two on a pain scale. Woot woot!!  It's been awhile since I've seen a headache this low. The highest it got to today was probably a four at work (DAMN you fluorescent lighting) but that isn't too bad.

Dr CrazyPants NeuroLady suggested a spinal tap after the results of the MRI because my left eye may be flattening to a pancake. Ok, ok.  Technically the words used were " Questionable flattening of the left posterior sclera", but since I don't speak Doctor I'm free to interpret anyway I want to.

PS if anyone is reading this to get some sort of medical advice please leave now. I grew up watching my diabetic grandmother mock her doctors by eating a loaf a bread a day and my favorite remedy for headaches is a few glasses of Citron and water.  Gotta watch my figure. 

I feel like I'm getting ahead of myself here and we just met. My bad. 

"Let me 'splain.  

No, there is too much. Let me sum up."

After about a year of the worst pain in my life (not even remotely being a little over dramatic) I was diagnosed with Chiari Malformation. Less than two months after diagnoses, on December 18, 2000, I under went bone only decompression at JohnsHopkins.  Best Christmas Break Ever!  Six weeks later life is good and I'm in the pool playing water polo, because what else do you do in Erie, PA in February?

Life's been going hunky dory on the Chiari front, get a few headaches here and there, would walk into a table now and again. Normal every day kind of things. 

Then I noticed I started getting stronger headaches more frequently, not a lot, but still more than more. And I was tripping up, down stairs, over my own feet. I got a headache one day, one that started from the back and laughed at the aspirin in my hand. Oh, no. It's back. 

About 25% of bone only decompression surgeries return to have their dura opened, and Dr W at JH pretty guaranteed I'd be one of them. There is always a little part of me hoping I won't have to go through that again. The surgery wasn't bad, sure painful there the first couple days but when I noticed how much weight I lost from the vomiting I was totally ok (I am mostly kidding about that last part there, but hey, I do need to lose some weight).

No, the absolute worst part was not washing my hair for TWO WEEKS!!  My hair merely laughed at the dry shampoo, saying "awww, you're cute". My thick Italian/Irish combo hair with a mind of its own wanted to be cleaned with shampoo and rinsed with water.  I shudder at the mere thought of going through that experience again. 

Thirteen years later though the symptoms are back, all together, at once. And we know what this means.