New Daily Persistent Headache, Writing, and the Joy of Being an Aunt.
Books I have read recently
Shirley by Charlotte Bronte — I'm reading a giant biography of the Brontes "Wild Genius on the Moors" By Juliet Barker (amazing!! but I'll post on that when I finish) So I'm reading each novel as it's discussed in the book. I loved Shirley. I have to agree with the critics that it is a slow painful start and it does take about 150 pages till we meet the title character Shirley. But besides that, it is so well written. Caroline Helstone’s angst is beautiful and poignant. And knowing that the last third of the book was written after Emily & Anne died explains so much about the change in the book. Charlotte likes to fix her world by writing about it and in her version the sick heroine recovers where her sisters did not. I definitely recommend Shirley for the Bronte fan. Don’t skip it.
A Court of Thorns and Roses by Sarah J. Maas --- It took me a couple chapters to really dive in but after that I was in love. I had read somewhere that it was based on Beauty & the Beast, which is great. What I did not know is that it is a retelling of one of my favorite fairytales: East of the Sun, West of the Moon!!! What a treat when I discovered that. I love that story. It's whimsical and the girl saves the day which I love love love. Sarah does a beautiful job of it and I can't wait for the next one!!
Shadow Study by Maria V. Snyder— I adore her soul finder books. I’ve been reading them for years. She builds beautiful strong women and sweeping romance. Her magic system is unique and I want to live in her world.
So I've decided to make a blog just about headaches. This blog has kind of been a compilation of headache post and family pictures. I think it's probably a good idea to separate the two.
So check out my new blog
Sunbursts or Marble Halls: A blog about New Daily Persistent Headache, crafts, and being an aunt. What do those things have in common? Me.
What is NDPH: It's a headache that never goes away. Everyday. All day. Lasting for years or forever. But it's not hopeless. I think more people need to talk about it because I've never met anyone in real life with NDPH so online community is all I have.
Don't know where to start. These are some of my favorite post I've written about headaches.
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 2015 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.
I stopped posting because I've been spending my time writing a book. Now it sits in a beautiful binder on my craft table and I figured I should dive back into the world of the internet. Apparently literary agents like to know that you can use the internet and make friends (Pah!) So here I am. When I was writing, I worried that anything I posted was lost material and couldn't be used in my book. That's probably not true. I did include a version of my pain chart in my book. My headache pain chart. It's more interesting than it sounds ;)
So I hope to post more and share what New Daily Persistent Headache is really like and how it's mostly not the end of the world.