Listen!

"Listen. I can’t stress that enough. Listen. 

Diagnosis of EDS can take years. I showed signs and symptoms of it practically from birth. But because no one would listen to me, or believe that my pain was as bad as I said, it took over 10 years to get a diagnosis." -Christina Gooch (EDS advocate and writer)

This weekend I felt I had to yell to be heard when it comes to some of my EDS symptoms. I had to yell to people I shouldn't have to yell at. People I shouldn't have to explain myself over and over and over to. It was difficult and extremely invalidating. It's hard enough to have to fight the medical community to put two and two together to figure shit out, but it's another thing entirely when people you once trusted, once respected, also chime in on how your realism is a downer, and denial is much more optimistic.

Fuck optimism. Pretending I'm fine and ignoring the issue is more acceptable than actually listening to me and giving me the help I'm asking for? Denial runs deep in some circles. Circles I no longer want any part of.

I'm frustrated and I'm fired up.

I Dreamed A Dream...

I love this version. Haven't listened to it in a really long time. The meaning is so different now... living with a chronic illness that slowly takes away everything you love about life.

"I had a dream my life would be... So different from this hell I'm living..."

Its a high pain, low morale kind of day.





Then, on YouTube, while sifting through some of my favorite singers, I come across this gem:

 

Ok, first of all, Brian Stokes Mitchell is my favorite baritone (sorry Dad...) and this song really moved me to remember the bigger picture. Plus epic crescendo's always make my hair stand on end. In a good way.

 

 

Speaking of epic crescendo's, this one gets me every time too:

 



My favorite tenor of all time, Luciano Pavarotti. The final stance when he's singing guts out? He's saying "Vincero! Vincero! Vincero!" which in Italian sounds like "vini-cello." Translation?

I will be victorious.

 

 

 

 

I hear you universe... I hear you. Vincero!

One of THOSE Days

You know the ones... Where it feels like you can't do anything right and the world knows it? That you just can't quite get a handle on what exactly you're supposed to be doing at any given moment? I'm having one of those days today. And it's not because I don't know what I'm supposed to be doing - I know exactly what I should be doing. I even have a prioritized "to do" list!

I just don't want to. Any of it.

I just want to shrug off all my responsibilities and head back up north, waving my middle finger as I go. Not helping with ANYTHING, just dumping everything at everyone else's feet and saying "here, you deal with all this - I'm done for now. Oh, you don't know how to take care of this? Well guess what, I didn't either until you initially dumped it at MY feet and asked me to take care of it. Did I bitch and complain? NO. I made some phone calls, asked some people, and FIGURED SHIT OUT without whining and complaining the whole freaking time. You know why? BECAUSE THAT'S WHAT ADULTS DO. No one is going to hand you things on a silver platter, that just isn't realistic. Sometimes you have to work hard and figure things out all on your own. Here, take all this and give it a try." (shove shove shove)

Yeah... It's one of those days. I should go outside and sit in the sun for a bit. Get my Vitamin D on and just soak it up.

Can you tell I hurt my wrist this morning? I did. Totally got bashed while trying to get a temper tantrum induced toddler dressed. It hurt. A lot. Got my wheels turning that I'm not sure how much of this I'm expected to actually take. I'm not feeling very strong right now. Quite the opposite. I've feeling exceptionally fragile and vulnerable. So I'm putting up my normal front when things are spiraling out of control... "Everything is just fine and I'm happy to just be alive!" It's a front... I'm losing control over here...

I want bacon... <3

Angry...

I've been in a pretty piss-poor mood lately. Mostly due to money woes, but also other things getting on my nerves. And in a time when words fail me, music comes to my aid.

I know I've been on a Mumford & Sons kick lately, but another song has me completely enraptured. Mostly because the sheer frustration/anger/fury is so passionately flung from their lips and instruments. I just want to crank up the volume, throw back my head and scream...

Broken Crown

Touch my mouth and hold my tongue
I'll never be your chosen one
I'll be home, safe and tucked away
You can't tempt me if I don't see the day

The pull on my flesh was just too strong
It stifled the choice and the air in my lungs
Better not to breathe than to breathe a lie
'Cause when I open my body I breathe a lie

I will not speak of your sin
There was a way out for him
The mirror shows not
Your values are all shot

But oh, my heart was flawed
I knew my weakness
So hold my hand
Consign me not to darkness

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I took the road and I fucked it all away
Now in this twilight how dare you speak of grace

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I took the road and I fucked it all away
Now in this twilight how dare you speak of grace

So crawl on my belly 'til the sun goes down
I'll never wear your broken crown
I can take the road and I can fuck it all away
But in this twilight our choices seal our fate

This song speaks to me. I've made "bad" choices, I've sinned, my values are all shot... I took the road and I fucked it all away.

Not just the lyrics, but the instrumental is amazing as well. Such an obvious outpouring of hurt and anger...