How do you talk to someone with a chronic illness, like chronic migraines? What do you say?

First and foremost, I don’t have to talk about it ALWAYS… while it’s part of me, it’s not ALL of me, by any means! Sure, I’m a freaking expert by default on the disorder, but I am so much more! I love having fun with friends, talking about our mom jobs and children, my passion for my Younique biz and empowering women, traveling, learning new things, current events, movies, home projects, medical issues, family, and so much more!

Sometimes I feel down – discouraged about the neverending nature of my illness and sometimes I want to use my twisted humor to deal with it. And it’s sooo okay to laugh about it. I do a LOT of eye rolling and laughing. It is so therapeutic! Lol.

One comment I get a LOT from others: “I get migraines sometimes but they’re nothing as bad as yours.” This makes me sad; don’t ever play down your migraine disorder just becuz you’re episodic and not chronic! If you’re a migraineur, I view you as a fellow warrior, whether you’ve have one migraine every three months or you suffer 15 or more a month! I’m no different from you – we both have a neurological disorder that has no cure. I’d love to talk with you about your treatment… maybe there are some options available you haven’t heard of? And I’d been interested hearing how you cope. I’d love sharing with you, fellow warrior! Don’t downplay your migraines! Even one migraine EVER is one too many for any human to suffer. We deserve more research, we need more treatments, we need better medical care, we need less social and medical STIGMA, we need more understanding, we need more discussion and awareness, and we need a CURE.

Another comment I get from well-meaning peeps: “Are you still getting those migraines? I thought you were getting the botox?” or… “I saw you this morning and you looked fine!” Yeeeaaah. These are tough. First, as of 2016, there is NO CURE for migraine disorder. There are three types of treatments to help: 1) preventative, 2) abortive, and 3) rescue treatments. For Chronic Migraineurs, usually a combination of all three treatments are required to MANAGE your neurological disorder. So first and foremost, the word “chronic” means simply – it doesn’t go away, it doesn’t end or stop, but it can be MANAGED. So, yes, I get the Botox and yes, it helps and yes, as disappointing as the reality is, I still get the migraines. To the second question… darn this can be a tough one to explain. I can look “fine” even when I’m migraining. I am so used to pretending and pushing thru the symptoms just to get thru the day… it would be embarrassing to me to “look like I feel;” I don’t want to look like a freak. I already feel like one becuz of this nasty disorder. Also, there’s a good chance that when you saw me and I looked fine, I actually might have been FINE! The devious part about Chronic Migraines is they are sneaky and can be creepy or instantaneous. The nature of the disorder makes my nervous system as sensitive as a toddler with PMS. I can wake up “fine,” run a couple of errands and then – bam! – a change in temperature, a startling noise, a fluctuating hormone, or basically anything in regular life can trigger a migraine. And then – I’m cancelling on you becuz my little migraine monster is demanding my full attention. They are predictably unpredictable and sly ninjas  just waiting to ambush. Frustrating making plans with me? You betcha. While I am reliable, my health is not. And it never fails to disappoint me. I feel awful letting people down and I feel awful missing out.

I do hope some of my lengthy essay can end the awkwardness.😊 Wanna chat about it? You know I’m always up for discussion! Thanks for listening and peace and love be with you all! 💜
#MyBeautifulMigraine #MAM

It’s not very beautiful. 😞 #mybeautifulmigraine

“She paints her eyes as black as night now
Pulls those shades down tight
Yeah, she gives a smile when the pain come
The pain gonna make everything alright

Says she talks to angels
Says they all know her name
Oh yeah, she talks to angels
Says they call her out by her name”

I can see them there…but I cannot touch…

…in this photo. I found it years ago and it took my breath away. I was looking at the representation of my life from a photo take decades ago…

…to moms who berate themselves hourly for not being able to be the mom their kids need. …to moms who often believe their kids would be better off without them in their lives, pulling them down. …to moms who spend most of their time in bed, experiencing their kids performances/games, etc from texts, videos and pictures. …to moms who don’t really think this holiday applies to them…but we are moms too. …to moms  who feel forgotten. We’ll just live life on the periphery…and fade away… And that’s okay. It’s okay.

Freaking ridic.
09:15, Wed: my head a 4+ climbing. My SI a 6 and needing heat. I also have a pulled muscle in the mid back. Mornings are hard.

Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I’m alone

I’ve got a migraine
And my pain will range from up, down, and sideways
Thank God it’s Friday cause Fridays will always be better than Sundays
‘Cause Sundays are my suicide days

I don’t know why they always seem so dismal
Thunderstorms, clouds, snow and a slight drizzle
Whether it’s the weather or the ledges by my bed
Sometimes death seems better than the migraine in my head
Let it be said what the headache represents
It’s me defending in suspense
It’s me suspended in a defenseless test
Being tested by a ruthless examiner
That’s represented best by my depressing thoughts
I do not have writer’s block my writer just hates the clock
It will not let me sleep I guess I’ll sleep when I’m dead
And sometimes death seems better than the migraine in my head

Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I’m alone
But I know, we’ve made it this far, kid

I am not as fine as I seem
Pardon, me for yelling and telling you green gardens
Are not what’s growing in my psyche, it’s a different me
A difficult beast feasting on burnt down trees
Freeze frame, please let me paint a mental picture portrait
Something you won’t forget, it’s all about my forehead
And how it is a door that hold’s back contents
That makes Pandora’s box contents look non-violent
Behind my eyelids are islands of violence
My mind ship-wrecked this is the only land my mind could find
I did not know it was such a violent island
Full of tidal waves, suicidal crazed lions
They’re trying to eat me, blood running down their chin
And I know that I can fight, or I can let the lion win
I begin to assemble what weapons I can find
‘Cause sometimes to stay alive you gotta kill your mind

Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I’m alone
But I know, we’ve made it this far, kid

And I will say that we should take a day to break away
From all the pain our brain has made, the game is not played alone
And I will say that we should take a moment and hold it
And keep it frozen and know that life has a hopeful undertone

And I will say that we should take a day to break away
From all the pain our brain has made, the game is not played alone
And I will say that we should take a moment and hold it
And keep it frozen and know that life has a hopeful undertone

Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I’m alone
But I know, we’ve made it this far, kid

Made it this far
Made it this far