How to want things appropriately. (I do no know how to do this)

I do not know how to want things the appropriate amount. I either want them all the way or I hate them. I'll give you two examples and then I'll show you pictures.
1. Hygiene School
So I applied to dental hygiene school and I wanted it bad. Really bad. It was my only dream. I had no back ups and nothing else I wanted to do. Then I received a letter telling me I was not accepted. I was put on the reserve list but that felt like a slap in the face. So I went to South Florida for the summer and spat in dental hygiene school's face as I left town. Dental hygiene school was actually dumb I realized. Only losers went. I had too much creativity and talent to waste it in a stranger's mouths. It was actually a blessing. I'd almost made a horrible mistake.
Then halfway through the summer, I got a phone call. I remember everything about that call. I remember exactly what I was doing. I was out to lunch with Jessica, her current boyfriend, and Matt. We were eating at a restaurant after seeing Superman. Jessica had ordered a fancy macaroni and cheese and did not like it as she had promised the waitress before she'd peer pressured Jessica into ordering it anyway. I picked up the phone call from my parent's home number and I heard my mom and dad say that they'd received a letter and I had been accepted into dental hygiene school. I remember I was the facing the windows (this is pre headache days) and I couldn't wrap my mind around what I was hearing. Dental hygiene school? I was accepted? I didn't even want that anymore. I really thought about turning it down. It still tasted bitter in my mouth. But we all know how this ends. I accepted it and then proceeded to live out two hellish years and then end up in a profession I really loved. I am unaware of the moral of this story.

2. Babies.
If anyone has had trouble getting pregnant than they know that 28 days is a very long time when you wanted a baby yesterday. It seems endless. So at first I was all cool about it. Yeah babies whatever. I'm still youngish and I'm in no hurry. And most of the woman in my family get pregnant easy so it'll be soon. Probably next month, oh then my baby can be born in April like me. Sweet.
Months go by and every negative test and first blood is painful. Like try not to cry painful. Just such disappointment. And I don't want to feel that way. I don't want this to turn me into a bitter monster but in that first moment I know there is another whole month I have to do this all over again.  And face this moment again. I have to tell Matt and he's cool about it. But he doesn't really have a choice.
So then I pull a Megan and start hardening my heart to the pain. I remind myself that children, and babies especially, are actually the worst. It's so hard. And with my headaches... I spend some time really trying to imagine what it will be like and my imagination makes me want to vomit. Who am I kidding trying to have a kid? If God is good then I'll probably never have one. It seems an impossibly hard task. And I'm such an amazing aunt. That's enough. So then I get my period and I'm relieved. Sighing as I take headache pain pills for the first time in 28 days. I get one more month of freedom. But then I start to believe my own propaganda. Maybe I shouldn't have kids. They are the worst, right?

So you see my problem. I wish I knew how to want things a medium amount, an amount that wouldn't kill me but also wouldn't turn me against my dreams. I still do not know how to do this. So I see-saw back and forth until God forces my hand and I'm stuck in one position or the other.


Pictures!!! the girl on the left is hoping for the thing that might happen and then the girl on the right has just heard it is not going to happen. See how they handle this news!

Wanting a thing a normal amount.

Wanting a thing too much

Wanting a thing too little

And now a bonus: The long awaited Cloppity Cupcake!!!

xoxox
Megan

P.S. Bri, your wish is my command.

The Missing Spoons

I had written this as a dialogue in my journal after 'the move'. It's a conversation between my mind and my body. My mind had big plans and my body had no spoons to do any of them. My body was living in a strange spoonless existence in a foggy oblivion with only drawings of spoons.

My mind has her hair down and my body has her hair in a bun.

I made this with Bri in my craft room as we listened to Magic Lessons. Best Night Ever!!

#NDPH

NDPH & Moving

New Daily Persistent Headache and Moving

Moving is the pits. Everyone knows that. No one likes it. I've moved a lot in the last six years but it's never been as bad for my head as this last move was. Granted there was so much stress over whether or not we would close on time or at all and that played a part in making it exquisitely miserable for me (and everyone around me). There are several reasons why moving is worse for people with migraine/headaches.
1.Your new house is not blockaded against the sun. The sun is just coming in wherever it wants. Your first and most important tasks is curtaining every windows in any part of the house you want to use. P.S. my husband and mother were amazing at helping me quickly turn the house into a bunker. Thank you!
2. Unpacking is a lot of bending down and reaching up. Both are bad.
3. The fridge did not arrive for days. So no ice packs. There is just not enough Bengay in the world to compensate for that.
4. Then all the stress and sore muscles. It is a recipe for disaster. Thank God I got my period and I was able to take the maximum possible limit of drugs and not have to worry about mutating a baby.
Back to how awesome Matt is, he was so aware that I was not in a good place. He was understanding and tried to help where he could. But he would also give me a look sometimes that was begging me to hold it together for just a little while longer and I'd nod and we'd get it done.

So here are some drawings of what moving with NDPH was like for me.
Now in these drawings pain = water in the magician water tank. Water level= pain level.
Low= low level pain days. Levels 0-3
Medium= moderate level pain days. Levels 4-7
High= high level pain days. Levels 8-10
Moving=... You'll see
You'll figure it out, you're a smart bunch ;)

So if I haven't called you back or if I've been super irritable and mean it's because I'm still recovering from moving and the horrible monster it turned me into. I asked Matt if I was being horrible and he said I just didn't seem as concerned about other people's well being... lol well at least I made it through. That's a win. Everything is a win from this side of things. XOXO

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. 

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.

Day 25 My Hope

So today is June 25th. June is Migraine and Headache Awareness Month. #MHAMBC Today's writing prompt was : "YOUR Hope," What do you hope for most in your journey with Headaches or Migraines? 

My hope for the future.... I really don't hope for a cure anymore. I know that's hard to believe and hard for my family to understand. It's not that I don't want to get better because I do. It's that I have changed the focus of my life away from the hunt for the cure. Trying to cure my headaches does not need to take the majority of my time, energy, and money. I had to come to a place of acceptance that if my headaches never go away I can still have an amazing life. I needed to stop waiting. Stop waiting to get better. My life was passing me by and I was  just waiting.

Not hoping for a cure was one of the best things I ever did. I feel free in a way I didn't know I could feel anymore. This is not for everyone. I don't know that with Chronic Migraine you can give up. It's too hard to keep trying cures when there are a million. But New Daily Persistent Headache... Until we know more about it, it just feels like throwing my money and time into the wind. It feels like insanity. Trying the same things over and over and hoping they will suddenly become treatment for NDPH. Migraines and NDPH are not the same thing. Continuing to treat NDPH with migraine treatment is a guarantee failure. 

Maybe there will come a time when I resume the hunt. Maybe the need for a cure will consume me again one day but I don't think so. I've finally given it fully into God's hands. If He wants to heal me, He will. That's enough for me. I've progressed so far down this road that I've written a note to my future self to explain why we aren't seeking a cure. I didn't know if I would ever post it. I really just wrote it as a note to myself when I was feeling weak but here it is:

Dear Future Megan,

Can you just listen to this for once? How many times do we have to do this? I don't say this to be be mean or negative but you have NDPH. If you ever get better is will be a miracle from God. So please stop wasting your money and time on people who promise they can help you. Guess what? They are lying. They probably don't mean to. Even as I write this I can see you plotting which doctor you want to visit next. So I've made a step by step guide to help you make good choices.
1. A high quality website does not mean they can treat NDPH or let's be honest, have ever even heard of it. Ok here is a test for you. Call the office and ask the Dr. if he knows what NPDH stands for. It you want to cheat you can even spell it out. If by some miracle they have heard of it, you may move to step two.
2. Do they really know what NDPH is? Ok say they do. But have they ever treated anyone with it or hey, have they even met anyone with it because you haven't. You may only advance if they say yes, okay?
3. Do they promise they can cure you or even reduce it? 
Yes- then you stop here. You may not continue. 
No-you may continue. People who say yes are delusional and probably just made an educated guess as to what NDPH stands for. No one can promise to fix you. Repeat this to yourself. Over and over when you are weak and it just feels so good to have someone tell you they can fix it. If they promise you may only continue when upon failure they will give you a full 100% cash reimbursement as well as a time compensation. They said no to that? Well then they aren't confident in their promise are they?
4. It's going to hurt. All of it. Even the things that don't seem like they will hurt. All of it hurts really bad. Massage? Physical Therapy? Chiropractic? Yes all of them and many more. Are you a masochist? I think you are. Because the last 40 times you went to the chiropractor it almost hurt as bad as your spinal tap for a moment. Not really but you do hear this comparison? It was almost that bad and it hurts EVERY time! All of them. Stop paying people to hurt you. Why do you do this??  Touching the ouch spots does not fix them. Repeat: Touching the ouch spots does not fix them. Why do you ask people to do this? Still want to continue? Fine.
5. So the pain didn't deter you. (Surprise, Surprise) How about the money? Think of what you can buy with all that money. We won't disclose the amount that has been spent in search for the cure because I don't actually know it. And we would weep if Matt told us because you could probably buy a pony and a castle in Ireland for us both to live in. Instead you give your money to Charlatans. But whatever a pony would probably be really stupid.
6. You are still going?!?!?!?! Ugh ok. We are now going to do some visualizing. You just finished your last visit, the one where they think you should be cured already. They will either:
a) tell you to continue to come forever, just in case. 
b) make excuse because your condition is 'chronic'. 
c) get mad and frustrated
Ending things is the worst feeling ever. They never understand and they make you feel guilty. They make you feel like you want to stay sick. Remember this feeling when you want to start things up. Remember how bad it is and how small you feel. You almost always cry in the car on the way home. But don't be discouraged here are some things you can do instead of looking for a cure.
1. Face Time your nieces and nephews
2. Eat food
3. Take a bath
4. Have a cup/pot of tea
5. Listen to the Book Thief again.
There you go. Those things are more fun and may make you feel a little better. Please remember this. Save your money for CC (Clopitty Cupcake, my pony is already named, obviously) and Ireland.

I should really include a drawing of CC. We'll see...

But the Fire Makes You the Dragon Instead. Day 24

So for Day 24 for #MHAMBC Migraine and Headache Awareness Month Blog Challenge the writing prompt was Christina Aguilera's "Fighter."

Best lines:

"After all of the stealing and cheating you probably think that I hold resentment for you

But uh uh, oh no, you're wrong
'Cause if it wasn't for all that you tried to do, I wouldn't know
Just how capable I am to pull through
So I wanna say thank you
'Cause it

[Chorus:]
Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter"

A main theme for this month has been letting the pain turn you into something better. A better version of yourself. This is really hard. It's much easier to let it turn you into a bitter husk of yourself. Letting it make you better and kinder is a full time job.

Recently I was listening to the new The Weepies album (for the 50th time) and I heard something I hadn't heard before and I haven't been able to shake it. So much so that I was compelled to draw it. The song is "Does not bear repeating" from Sirens.

To not lie down on solid ground,

not slink around this time

That's over head, boy, that's under head

but the fire makes you the dragon instead

This is not the way I thought it would be

Thought it would be much lighter

This is not the way I thought it would be

Thought it would be much brighter

I thought I saw stars, but it was a rain falling

I thought it was a fight, but it was a game, all in

I thought it was a once, but it was again and again,

and again, my friend indeed, does not bear repeating, oh

wo, wo, wo, wo, wo, wo, wo

I thought it said. "Let the fire make you a dragon instead". But the actual lyrics are " but the fire makes you the dragon instead." Either way, I love the idea of the fire making me a dragon instead of burning me alive, instead of destroying me. I want the fire to make be stronger and tougher and faster and a dragon. Who doesn't want to be a dragon? So here is a drawing of the fire turning me into a dragon instead.