Friday, June 17, 2016

Six Impossible Things

Six Impossible Things.  Having New Daily Persistent Headache means believing you can do six impossible things before breakfast.

I love Alice. I really should try and finish the books. Six impossible things. Count them, Megan.

1. Climb out from under a pile of bricks
I feel really bad first thing in the morning. I'm so sore. Every muscle hurts, every bone feels bruised somehow. At first it's kind of like I haven't slept at all but instead was beat up by a gang of bikers all night. But I bear no bruises. I guess it's all in my head ;)

2. Defeat the sun

I don't like the sun. I don't like the cut of his jib. I don't like how he things he can just shine wherever he wants. All my windows are curtained except one. I have this very tall window above my door. Every morning it shines right into the hallway and into my eyes. It's a poignant, deep hate. But every day I don't die, so we call it a tie. We have only recently purchased a ladder high enough to get up there. 

3.  Wake two baby lions

It's super dangerous. People have almost died from cuteness overload. This is the best part of my day. Poppet and Moxie are so sweet in the morning. They do look a little bit like lions with their ruff of fur all fluffed around their faces.

4. Let the pain live.
I don't take any medicine. Heavens knows I want to. But medicine turns unborn babies into mutants so I abstain. But this year and a half of trying has been a painfully long time to grin and bear it. Sometimes the grinning part is impossible. But wait nothing is impossible right.  See I'm smiling.

5.  Cuddle cloud kitties.
These kitties are impossible soft. The softest kittens every born. You just can't imagine it. It's like this times a million.

6. Wait by the door.

"Feeling better" is waiting for me on the other side of the door. The other side is my life before. A healthy, care-free life. That door and I are never the right size for each other. I just stare at and will myself to fit. But I'm either too small or too big and even if we were the same size, I've never seen the key. So I just wait. This one is especially impossible.

But thankfully after I've done these six things I eat breakfast and then everything is a whole lot better.

Friday, April 8, 2016

5 year anniversary

***Disclaimer*** Lots of sad feelings but it ends happy
This is a very strange thing to see. I've had NDPH for five years. There is this question spoonies ask each other. It goes something like this "If you could go back in time to when your pain had just started, what advice would you give yourself?" Examples are : "I would tell myself not to go to Dr. XYZ or try this medicine." "I would tell myself that my condition was ___ and that if I started to accept that now, my journey will be so much smoother." "Avoid the _____ event that started everything."
My answer was this "what a question. Mine were inevitable. I don't know that past me benefits from knowing that 4 yrs from now it still won't be gone."
I think a lot about past Megan when our anniversary looms. I've been preparing for this post for a couple months. The five year mark loomed before me and I wasn't sure what to do with it. So I started to compile things. I journal a lot, specifically prayer journals. It's how my brain works. I have to get it out, all out. When it's out, it's almost like it wasn't there. Almost. So I went back through my journals and found my thoughts for each past anniversary and made pictures depicting each! 
P.S. My headaches started April 5, 2011

5 months entry:
"Nothing but alive in your hands. Today was a bad day. My head hurts + neck + shoulders and it was an easy work day. I am so broken and in the depths. Is there a purpose? Are you trying to cultivate something in me? Trying to teach me something? I love you and I need you. Thank you for your mercies. Thank you that my head hurts less. Help me to stop crying and not get into a self-pity cycle. I love you. You are all I need. Not relief. Not to be retired. You. You are enough."
I don't know nothing about pain. I was just born yesterday
Oh bless five-months me. Little la-la-la lamb had no idea what's coming. This was the mental picture I got instantly. She thinks she is sad. She thinks she is in pain but it gets worse.

1st year entry:
Psalm 13
Lord, how long will you forget me? Forever?
    How long will you look the other way?
How long must I struggle with anguish in my soul,
    with sorrow in my heart every day?
    How long will my enemy have the upper hand?
Turn and answer me, O Lord my God!
    Restore the sparkle to my eyes, or I will die.
Don’t let my enemies gloat, saying, “We have defeated him!”
    Don’t let them rejoice at my downfall.
But I trust in your unfailing love.
    I will rejoice because you have rescued me.
I will sing to the Lord
    because he is good to me.
Where did these come from?
She is so confused. I remember thinking "Surely it will end any moment. It will end so soon like having a cold or a pulled muscle. Any day now." Hitting the year mark was so bizarre and foreign that I didn't even get it for a while.

2nd year entry:
Two years. I feel that I dare not even call to You. I’ve pretty much ignored You because You chose not to heal me. I’m not angry, just sad. I remember when I hit one year. How much longer does this go one? I wish, I pray to have my life back. Where is my cure? Please let me find it. But until then, help me to be kind. Let my suffering make me kind. Can we do this together? I know I’ve been trying to do it on my own. I’m so defeated. God help me. 


3rd year entry:
3 years... I am horrified. That thought roils my stomach. It’s like swallowing a balloon of ice cold air. I just live in such denial of the time passing. I’ve been saying it’s been 2 1/2 years way past the time. Up until a couple months ago. How many more? Will I read this next April and cry at my naivety as I have done at my other anniversary entries. The despair is so real I feel it like a cloak or a dementor. But even so there was March. Last month was good. What was that? Hope. We all know what Ben Folds says about that... It’s a poisoned fount. But I’m dying of thirst and I can’t stop myself!! I hate myself for smiling about it!! But the next second I start to cry so I’m not lost. I want to be a mother. I’m ready. Please let’s be done okay?
Matthew 7:7-8
"Keep on asking and you will be given what you ask for. Keep on looking and you will find. Keep on knocking and the door will be opened. For everyone who asks, receives. Everyone who seeks, find. And the door is opened to everyone who knocks.
Cloak of despair
I remember where I was when I was writing this. I was at the airport on my way to FLL for Cruising with a Mission. I was feeling really bad and there were no good restaurants. I had decided to do a check of the past couple months pain logs and was horrified and also surprised. There were a lot of really bad month but March had been surprisingly good. Good enough to give me some hope. But not enough to pull me out of my pit.

4th year entry:
It passed me by. I never thought April 5th would pass me unaware. The sadness is so minimal. It’s not the all consuming despair it has been. I’m so grateful. I’m so glad to be freed from that pain. I really think finishing Elinor, saving her has saved me. Because if I couldn’t save an imaginary character what chance was there for me? In regards to my entry last year... I’m so glad that I don’t curse her as a fool for hope. It’s not better but it is. What will next year be like? Will I be better? Will my acceptance have transformed to pure joy? Will I have a baby? For the first time in forever the future feels like only Hope. Only good things. The pain is unaltered but I am altered. 

Turning pain into butterflies
- I can hardly believe I wrote that but I remember writing every word and I remember exactly where I was. I was at Duke hospital for a dental appointment and I was on my phone. Suddenly I realized the date. It was April 11th and April 5th had passed me by. It was like a punch in the chest it was so surprising. I had just recently found peace and it had come into my life like a grenade blowing everything else away. My drawing is of me making origami butterflies out of the old calendar pages. Making something beautiful out of the pain.

5th year entry:
"Yesterday was my five year headache anniversary. It wasn't the saddest but maybe that was because I had been dreading it so long. Let this be the last one. Heal me!!! now. today. I trust you. It's hard to remember before. Last year's anniversary was so pure and hopeful. I almost don't recognize myself in it. I want to be what she hoped I'd be. Not sure I am. But it spurs me on. Next April 5th I will be celebrating healing. Lead me out of this wilderness and into the promised land. Let me see your miracles and wonders."
Joel 2:25
"I will repay you for the years the locust have eaten."

2 Corinthians 12:9
"My grace is sufficient for you. For my strength is made perfect in your weakness."

Waiting at the intersection of faith and hope like Anne Shirley. 
"I know God is coming to take me to the promised land but if it's not today I think I'll just sleep in that wild cherry tree and wait again tomorrow."

See it ended happy. Sorry if that was too much honesty but it is what it is. 
Happy 5 year headaches. 

Saturday, March 19, 2016

How to survive headaches with no medicine

So when you are trying to have a baby you can't take any medicine because medicine turns babies into mutants. The whole nine months without any emergency drugs was part of what took so long for us to try. It's super scary and just about as hard as I imagined it would be (I have a very good imagination) So I thought I'd share my survival tips in the chance that it helps another spoonie.

Step 1: Curtains. For real. Curtain every entry point that sunshine can leak through. The sun is enemy #1. Be proactive. I've thought about stapling the edge of the curtains to the wall but that's crazy....

Step 2: A well stocked freezer. This is exactly as important as step 1. I would die without my ice packs. I don't travel anywhere without them. 

Step 3: Bengay.  I'd name my firstborn "Bengay" if that wasn't the worst name in created history. I literally have four tubes of this within a thirty second walk from where I'm sitting right now.  A thing I said about Bengay: " I grab some Bengay and spread it on my temples. It is so cold and numbing I could marry it." And I would marry it too.  But don't ever buy another kind. Only cold therapy is good. I don't even understand why they make another kind.

Step 4: Naps. Naps are the greatest under-utilized tool of my generations, heck of all generations. I take a nap most days. There are few things a three hour nap can't fix, except for when it actually makes my headaches worse. But you win some you loose some. I'd go crazy if I wasn't able to nap anymore. 

Step 5:  Coke and Tylenol. So what do I do when things get bad even after steps 1-4 haven't worked? I drink a Coke and take some Tylenol. It's absurd that this is my rescue protocol. Rescue protocol is what you do to abort a really bad headache. Rescue drugs are the nukes of your arsenal. So it's absolutely laughable that I expect Coke and Tylenol to do anything. But when you've had nothing, you'll take what you can get. Sometimes it helps, most times it doesn't. But it helps to keep the panic down. So that's something. And Coke makes me happy. I shouldn't really take either of them but I like to be a rebel. As a strange man told me just today "Hey, I like your hair. It makes you look like a badass." *Best compliment ever*

Step 6:  Heating Pad. This one is a maintenance tool more than an emergency tool. But I use it every day. My back is stupid and hurts all the time but it's nothing compared to the rest of me. So I give it a heating blanket and tell it to shut up. But my heating pad is really nice and takes the edge off.

Step 7: Take a bath. I love baths. Having bright hair does complicate things, since the color leaks out in warm water. I like to listen to movies while I'm in there. Usually Decoy Bride or New Moon. It has to be something I know well and can listen to instead of watch. But I really don't take too many baths since I'm not allowed to make them scalding lava temperature which is the only way it's worth it.

Step 8: Audible. This is what saves the day when everything else has failed. When I've been at a Level 9 for hours and I can't take medicine and I can't think the pain is so consuming, listening to an audio book saves me. It pulls me out of my pain prison and takes me to another world. It also keeps the panic down and keeps me calm as I wait out the storm. I've listened to the Book Thief 4 times. Jane Eyre chapter 27 a million times and On Writing by Stephen Kind 2 times.

Hope this gave my headache friends some tips and my loved ones a look into my life.  What I really probably need is a Step 9: Fluffy baby kitty!! But all good things to those who wait.

Wednesday, March 9, 2016

Bitterness: The Boomerang of Emotions

Bitterness isn't the only emotion that does this, of course. There are lots of emotions to come back around moments after you throw them away as hard as you can. But to each villain is own vice, as Edward Rochester would say, and mine is towards bitterness.

I wonder when it first started. I think we all have a favorite failing. I think it's written in our personality and life experiences like a thread in a tapestry. Because there are faults I have to fight all day every day to stop and there are other things I'll never be and I don't even have to think about. We are each our own strange little creatures with our own mountains to climb.

So as I've discussed, my journey in and out of bitterness about my headaches was slow. When my headaches first started I wasn't bitter. I had no idea what was going on and what was ahead. Sometimes I read journal entries from that time and I think "Oh poor little thing, you have no idea what is coming and how the long the road will be." And then I think about the future Megan who will think I was a fool for thinking that way because she knows what's waiting for me. Cheerful thoughts. So the bitterness came slowly after a couple months. I think it started when I had to stop working. That was a big adjustment to make. I'd love being a dental hygienist and the idea of being a stay-at-home invalid was very depressing. It felt like failure but even then it was a temporary solution. If I wasn't working I'd have loads of time for doctors and treatments and it would be over before I knew it. But we know it wasn't and a seed of disappointment was planted and turned into bitterness.

This stayed and worsened for the next three years. It got stronger and better at hiding itself from me. I thought I was being strong and tough. But I was angry and mad and bitter and those aren't the same things. In June two years go, I finally got it. God was allowing this to happen. This was my cross to bear. And He was enough. He was enough to get me through it. It wasn't too much because he'd give it to me and He would give me the strength to get through it.

Then it got better for a while. People noticed a change. I was kinder and smiled more and was happier even if I wasn't feeling better and then something happened. I think the pain got to me. I had started to get slowly progressively worse and I think I just lost it. Maybe it was also try to get pregnant. Either way bitterness came creeping in and I didn't even notice it. I'd stopped praying for God to heal me and I thought I was just giving him space. I didn't want to get mad at him for not answering my prayers so I wasn't praying them. I was just skipping the fight by not even talking to Him. I know I'm a genius. It started to feel like hope was for loser. As every hipster knows, he who cares and tries the least is the coolest.

Anyway I started to wake up when I went to visit Lauren in Raleigh. We were talking about bitterness and I said "Yeah I used to be really bitter. But I'm over it?"
And she said full of love and I'm sure not aware what her words meant to me "And you aren't anymore?"
Ouch. I started the painful process of looking at myself. Was I bitter? No, that was impossible because I'd already dealt with that feeling one time. So it was gone forever. But I'd really just pulled a classic Megan.
Can't see it, don't feel it!! Works like a charm until the unseen feelings get organized and all pounce at once. It's super fun when that happens.

So anyway I'm finally crawling back out of that dumb hole but I'm trying to be wiser this time. I'll be looking for it when it comes back. Because it will. It's so hard to stay positive. I have two setting.
1. April Ludgate- I hate everything. No one talk to me.

 or 2. Leslie Knope- The world is sunshine and rainbow and I want to marry it.
(There is no in-between.)
Anyway time to turn the feeling switch to full flow as I turn into Leslie Knope.

Tuesday, March 8, 2016

So... I live here now

So life is a journey right? But sometimes with chronic pain it seems a lot easier to just stay right where you are. Because it is so hard to keep moving forward especially when every day seems the same. I'd deluded myself that hunkering down and waiting out the storm was the strong sensible thing to do. But really it was the coward's choice, the tired untrusting coward. I looked into the fiery furnace that I'd been trapped in for years and said "fine, I live here now."
I'm sure this seems really dumb to healthy people. Who would choose to stay in such a horrible place? But the thing is that choosing to stay or not has actually no impact on being able to leave. I'm waiting it out. I'm waiting for that fourth man to rescue me or for death to take me after a long life of being in there. I don't actually get to choose when I leave. So I stopped trying. 

One of the big problem is that the way out isn't labeled, or if it is it seems like a longer trip than Frodo's journey from Hobbiton to Mordor. So instead of the frantic search for the possibly non-existent exit it seemed graceful and 'above it all' to just make the most of the flames.

I like the story of Shadrach, Mechach, and Abendigo. They are thrown into the furnace for not bowing down to King Neb's idol. There is this line that moves me:
“King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. 17 If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us[c] from Your Majesty’s hand. 18 But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.” Daniel 3: 16-18

The God we serve is able to deliver us ...But even if he does not. 
I took this to mean that I should get cozy in the furnace because God might not let me out, now at this point I'd long since stopped asking for him to take me out. (this is another entry coming in a couple days). I'd been in that fiery furnace for years and God wasn't taking my headaches away so instead of spending all my energy in trying to claw my way out of a metal room, I burrowed in for the long haul. I decided that only God's divine ability was getting me out, so I should just stop worrying about it so much.
Pastor Dickie preached about adversity a couple weeks ago and he said. "Sometimes God delivers you from the furnace but sometimes God delivers you in the furnace."
I was obviously the second. I was going to let the fire burn away my impurities and turn me into an awesome steel blade. And why not play cards while I waited. It almost seems like a legit plan as I reread what I've written so far but I wasn't in there playing cards and patiently waiting on the Lord, I was in there completely alone with no hope of getting out. I'd stopped asking God to heal me and I'd stopped looking for the way out. I'd given up on God's promises. I'd forgotten who He is.  

I'm still in there but I waiting for Him now. He's coming and I know it and when he does all glory will go to Him. It's sooooo much harder to hope than it is to give up. It was a lot easier to not care but I was just lying to myself. God was always with me and He's going to take me out of there or do something even better. 

I'm in a Bible study with my mom and Jody Allen and it brought all of these feelings out into the open (that's my least favorite place for feelings to be). We were talking about when the Israelites were wandering the Wilderness for forty years and what our own Wildernesses looked like. I said, I just live there now. But that was such a dumb thing to say. I'd missed the whole point of the Wilderness. The forty years of wandering the wilderness was not pointless. It wasn't needless torture and obvisouly, Megan, it wasn't the final destination. But I'd just been walking in circles for so long that I gave up. I pitched a tent and decided to stop journeying. I told myself that the journey was actually going to last forever and that I would neeeevvvveeerrr make it to my promised land. The road ahead didn't have an end and there was no way to go back so I moved in. But the point of the wilderness time is to grow closer to God not to ignore him. None of my wilderness time means anything if I don't let God finish it and take me to the promised land. 

It's harder since I packed my tent and started walking again. I hate walking and being outside and the sun and the path goes up the mountain and then where? There is probably another mountain and then another mountain. Just thinking about it makes me tired. But what is really great is entertaining the idea of being well again. That's a heady thought. Maybe New Daily Persistent Headache has an expiration? But even after all my writing about how I'm good now, writing that last sentence was painful and it made me roll my eyes. Apparently deciding one time to hope again doesn't change things forever.  And that leads perfectly into tomorrow's post about bitterness.

More posts coming later this week. I've opened the box of feelings and they have to go somewhere. Sorry hehe.

Tuesday, January 19, 2016

Why I dye my hair crazy colors?

So I've had so many people ask my why. Why pink? Why purple? Why blue? They have their own guesses but they are curious. And I should have an answer. People don't just do bold things like this for no reason, right? Because every time I'm asked, I find myself sputtering some half truth but I don't know what the other part is. So I decided to paint it out. I'm a secretive middle child. I keep things so deep inside sometimes I can't even find them. So here's the answer:

The journey so far:

Each is their own strange creature.

1. Blonde
This was all I'd ever known. I remember the moment when my white blond hair of childhood darkened into a muddy dirty blonde/brown color. It was unsettling. Thankfully Mindy fixed me up in a pinch and I've been dyeing my hair one color or another for ten years. Blonde is the color of my mother and my childhood and my early romance with Matt. I'd always been blonde. It was who I was and I had to get a little distance from it.

2. Brunette
I liked it. I liked being a brunette but it was super weird. Super weird. While painting these sketches I tried to find a way to describe how I felt different. It felt like I'd put on a disguise. Like I was a Megan wearing a suit of another person but still secretly me underneath. I get how super creepy that sounds but I think I just didn't feel like myself and that made me feel uneasy. So back to blonde for another three years until the itch started again.

3. Pink
Okay before I post the drawing let me explain how I got there. Celebrities had been dying their hair different colors but I wasn't moved. Until fictional characters did it. Obviously. Ok here are the two characters that planted the pink seed in my brain.
A. Beyond the Boundary. It's an anime. Yeah, you don't even know the depths of my geekiness. She has pastel pink hair and uses her blood as a sword. I wanted to be her.

B. Matt and I were playing this MMORPG Wildstar. (I warned you) and my character had pink hair and I loved her! This was the final straw. I had to have pink hair.

Me with pink hair:
Pink hair was like coming home. Pink hair was the most natural thing in the world. I felt exactly like myself.  It was like I leveled up to a more awesome version of myself. But I got bored and restless.

4. Purple
From pink, purple was a natural next step. It was easy and instead of feeling like an fictional character, I felt like a real live(undead) vampire. It was awesome. I felt like Dark Megan, a little bit bad. It was fun. 

5. Green
But it was time to bleach it out. To start over and go down a new path. Mint green was the new color.
And I felt like a stinkin mermaid or a water nymph or a superhero. All good things. But green was hard to maintain. And it was only a stopping point on my way to blue.

6. Blue
Karou, Karou. Man I feel like Karou from Daughter of Smoke and Bones by Laini Taylor. But more than that I feel like Karou/Madrigal combined. It's such a nice rich jewel tone but it turns my fingers constantly blue. It's a bummer. But Blue also feels like the end of the journey. I've had this exciting adventure and I think I'm ready to be just Megan again. But who knows maybe I'll just bleach it out and go pink again.

So to sum this up, I apparently have no idea why I do the things I do. I'm such a strange creature.
What does any of this have to do with headaches? Nothing. But I looked it up and my head was the best while I was pink but honestly that probably because June was pre-move and my brain hadn't broken completely yet. So pink it is ;) jk I have no idea obviously.