Wednesday, July 22, 2015

Hope Quotes

I have this strange obsession with hope. But not in a good way like "OMG I LUV HOPE!" No I'm obsessed in the creepy "press-my-nose-against-Hope's-window-as-I-watch-it-watch-Jeopardy-at-night" kind of way. But it's also a morbid fascination with other people's views on it. I collect  quotes about hope like a magpie. I didn't even realize it until I was watching Community on Yahoo and I had to replay a scene over and over so I could write it down.
It's the episode where they are trying to find out if Greendale gave a degree to a dog and Frankie and Annie are investigating in the dean's office.

Annie "What do you hope is true?"
Frankie "Oh God. I never hope. Hope is pouting in advance. Hope is faith's richer, bitchier sister. Hope is the deformed addict-bound incest monster offspring of entitlement and fear. My life results tripled the year I gave up hope... What's true will be true. Our job is to deal with that truth."

I love that quote. It's so elegant and dark. Of course the moral of the episode was that hope was good. Later Annie is given "hope points" for her good work.

Other hope quotes I like. Obviously Ben Folds & Nick Hornby's "Big Picture Window"

"You know that hope is?
Hope is a bastard
Hope is a liar
A cheat and a tease
Hope comes near you?
Kick its backside
Got no place in days like these."

And then Emily Dickinson's "Hope is the things with feathers"

“Hope” is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops  at all
And sweetest  in the Gale  is heard
And sore must be the storm
That could abash the little Bird
That kept so many warm
I’ve heard it in the chillest land
And on the strangest Sea
Yet never  in Extremity,
It asked a crumb of me.

That one has a much prettier theme but each is true and each is an incomplete picture of hope.

Romans 15:13New Living Translation (NLT)

13 I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.

Romans 8:23New Living Translation (NLT)

23 And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children,[a] including the new bodies he has promised us.

That's what hope really is. God is hope. 

Sunday, July 19, 2015

New Daily Persistent Headache: What it is and what it isn't.

I original wrote this blog post for my old blog, Sunbursts or Marble Halls. But I wanted a blog dedicated solely to my headaches so I'll repost it here.

It is... a headache that starts one day suddenly and doesn't go away. It's everyday. Every single day. Mine started four years ago, April 5, 2011. I remember the day like it was yesterday. We had just come home from Tampa/Orlando. We'd visited all the theme parks around there. We come home to our apartment. I open the front door, walk in, and BAM! It started. That simple. That quick. Most NDPH sufferers have similar stories. I was doing _____ and then it started. It's memorable. The day the pain started. My primary care provider thought it was just a headache. Then four months later I see my first neurologist. She says its chronic migraine. And not until Oct 2014 did I finally get diagnosed with New Daily Persistent Headache.

It isn't... forever. Probably. I've stopped counting on that. There are a couple message board of people that have found relief but each is subjective and unrepeatable. I think the problem is that we have no idea what causes NDPH and I think a lot of people with daily headaches just get lumped together under NDPH because there is nothing else. It's kind of the umbrella diagnosis for weird never-ending headaches.

It is... a real thing. I had a chiropractor ask about this. I told him that I have NDPH and explained it because he had never heard about it and then he says "Is that a real thing?" What were you thinking when you said that chiropractor-man? Did you expect me to say "Nah. I just made that up. You caught me"? I didn't get mad at him. I figured he meant "Oh wow I can't believe something so horrible could be real. I do believe it. I just wish it wasn't a real thing." Yeah let's pretend that's what he meant.

It isn't... a migraine. It' different. It's its own horrible animal. There is this misconception that migraines are the worst pain imaginable and that a headache is a lesser migraine. No. You can have a migraine and not be in any pain and you could have the worst headache ever charted and it still may not be a migraine. When I tell people that I have a headache disorder my husband likes to pipe in "Yeah but they are as bad a migraines." He says this because people don't take headaches serious. But people don't really take migraine seriously either. A migraine/headache has become this excuse people use to get out of doing stuff they don't want to do. " Oh I can't _____ I have a bad headache." (Then post pictures of themselves attending a hot yoga class in the sun with loud music playing.) I get it. It's an easy excuse that can't be disputed. Because headaches are invisible.

It is... intractable. This word means resistant to treatment. But that's not exactly the perfect word. Because New Daily Persistent Headaches have only two real treatments. And those are just guesses. 1. You have a blot clot in your brain. They do a MRA & MRV. If you do not have a clot too bad.
2. You have low spinal fluid levels. They do a spinal tap (Oh God. I'll post on that sucker later) Spinal fluid is fine too bad.
3. There is no third thing. That's it. If you don't have one of those two things then they have no idea what is causing it.

It is what it is.