The Disabled are just Neanderthals who don’t belong in the 21st Century….

It feels like I’ve been reincarnated into someone else and become a stranger to myself. I died inside when the fiery ice smothered me and now all that’s left is the outer shell of a rotting corpse.…

Source: The Disabled are just Neanderthals who don’t belong in the 21st Century….

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This speaks to me. ..

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Brain Fog and Chronic Illness. – http://www.inflamed-and-untamed.com/post/141447361642

All of these things…

So I’m heading out of town again to see the doctor and get another scope of my illeostomy to see if it is doing better.  I know already it’s not.  I’ve been throwing up more often, just randomly, and my stoma is still pretty raw and bleeding.

However, this morning I lay in bed thinking of so many things… the sad, the awful, the traumatic… the lonely, the losses of so many precious things… but also of the triumphant and the beautiful.

I like who I am- even if I am a beautiful mess.  And all that pain… well it’s part of who I am.  But so is all that beauty and wonder and color.  I forget so often… but this song reminded me.

(AWOLNATION “I Am”)

No time like the present, I guess!

Jeez.  I don’t even know where or what to start with.  I haven’t written in so long and so much has been going on.  I have this tendancy to think every single damn detail of what’s been happening is crucial to share… it irritates most people and I used to think it was just one of my little annoying traits.  Turns out, my therapist says it is PTSD related.  My brain can’t tell the difference between essential and non-essential information.  So, bear with me.

I’ve been keeping my distance from WP because there were some big changes happening in my life, new realizations and issues, and it all was just too overwhelming and sometimes painful to deal with long enough to write about it.  But I love my blog, I love the people here, and it’s time to get back… tonight I decided, no time like the present.

I’ve written before about wanting to have kids but being unsure about many things in that regard due to my health.  Sorry if I repeat any health info, but I can’t remember right now what I’d shared and what I hadn’t.  Shortly after my surgery last year to have my illeostomy, I noticed my periods were abnormal and extremely painful.  I went to the OB/GYN here, and after some ultrasounds and MRIs she told me my fallopian tubes were about 5 times too large.  There was inflammation and some other things going on that basically meant the ONLY way I could possibly get pregnant was if the tubes came out, then we would have to try IVF.  But the advice, because of my previous difficult surgeries, was to have a complete hysterectomy when I had surgery.  There was no rush… I had time to consider some things.

A very dear friend of mine had offered to be a surrogate if I needed.  We already knew pregnancy would be difficult because of the continuing health issues and all the scar tissue.  So at this point, it became sort of the plan.  Both my husband and I felt though, that I had to have some improvement in my mental and physical health before we jumped into anything.  I’d looked at the numbers and I knew the cost of surrogacy would be an issue… but I clung to it anyway… because it just had to work out.  I could not imagine what my life and future would be without having a family.  And I wasn’t going to let money be the thing that kept me from it.

I was positive that with this plan, I’d get my damn butt off the couch and start to take care of life so that I could prove I could take care of a kid.  It seemed so obvious to me that if I wanted that the most, then it would be enough to overcome the difficulties I was feeling just with day to day life.  But it didn’t really work that way.  For months I sat surrounded with the same mess everyday telling myself I was going to get it together.  In the mean time, my periods got much worse, and so did my IBD.

I now have small bowel inflammation, though they don’t know for sure if it’s Crohn’s.  But I had to go back on Humira, and I started on Imuran (now I’m on 6mp)… these are chemo-type drugs and they warn extensively against getting pregnant.  But the drs said I should still be able to do IVF with the surrogate.  So I clung to it.  But as time passed and I watched my sister take care of her two daughters… as I tried to keep up with my neices for just a weekend at a time… I finally had to accept some things.  I wasn’t any closer to feeling healthy enough to take care of a baby, and the reality was that we were never going to be able to afford it.  And I realized at the same time that I had always known this… I’d just been unable to face it.

So we came to a decision that it was time to have the hysterectomy.  If I ever get as healthy as I’d like, then adoption may be in our future… but right now… it’s out of my hands.  I hated making the decision, but also knew without a doubt it was the right one.

Still… I grieved.

I had my hysterectory Oct 21st.  I was DETERMINED to be out of the hospital in 9 days or less.  I had already gotten tickets to see Bo Burnham in SLC on the 31st and I had been looking forward to it for MONTHS.  No way was I going to miss this show.  And the drs were sure it would be a 2-3 days stay… hmm but guess what.

My colorectal surgeon always referrs to my abdomen as being a very “hostile” environment.  They had 6 HOURS scheduled for my surgery because based on previous experience, she (my CRS assisted) expected to have to remove a lot of scar tissue.  It was still a mess in there, but they finished in 4 hours, so that was good.  And I was doing really well for the first few days.  Then, the night before I was supposed to be released, all hell broke loose.  I was up ALL night throwing up.  I don’t think I have ever in my life thrown up that much.  It just kept coming.  I didn’t sleep at all (neither did my poor husband!).  And it just kept going.  After that night, I couldn’t even keep the clear liquid diet down.  I’d developed what they call a post op ileus.  Which basically means my digestive system shutdown.  Not really a huge surprise.  6th surgery in 4 years and they’ve all followed this pattern, worse each time.  HOSTILE ENVIRONMENT!  (There were actually a lot of nightmarish aspects to this hospital stay but I’m not going to get into it all.)  Bottom line- I did get released on the 31st… but I still couldn’t eat or drink and hadn’t in days.  They sent me home on TPN- which is basically a “portable” IV (a PICC line) to “feed” me all my calories and such.

Needless to say I missed Bo Burnham.

I actually just came off TPN a couple of days ago.  Still having trouble eating regularly, but we decided it was time to try it.  Doing ok so far, still taking lots of nausea meds, sleeping a lot, etc.  But the last 2 months have completely passed me by.  I feel kind of lost right now.  I’ve been trying to catch up on other people’s blogs… but I still get really overwhelmed easy.  So, I’m sorry for such an extended absence.  I know it’s understandable, but I’m sorry for myself and all I have missed.  Gonna try to be back more often though.  (I know, I say this a lot… Doing my best!)

Still so fucking sad I didn’t get to see Bo.  I think that depresses me more than any thing else about that hospital stay.  Oh fucking well.  (I added that last fuck for you CC! haha)

 

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Fantasy Camp

So we’ve been trying to create my “safe place” in therapy.  It’s not been easy.  The very idea of safety seems, to me, such a falsehood… the best I could do was start with a “happy place.”  That part was kind of easy.  There’s a place we used to go camping when I was a kid.  It’s still the one place I try to visit every summer, even if it’s a short visit.  Something about the mountains and nature in general has also been so calming to me, but this place in particular, seems to still hold a certain magic. Probably remnants of the magic I felt as a child everytime we got to go.  100_0250 SNC00083

So, once we identified the place… we had to figure out how to make it safe.  My homework this week has been to try bringing people into the space that would meet those needs and make it a “safe place.”  The hardest need for me to meet was emotional safety and support.  I tried really hard bringing real life people into my space to meet all these needs, but this was the one I just couldn’t quite fill.  So my therapist suggested trying characters from the books I read or the shows I watch… (he knows I’m a huge geek).

So I gave this a try, but found that I have a really difficult time, if not a complete inability, to separate emotional intimacy from physical intimacy.  Which, when I realized this, made a lot of sense.  However, I finally did think of someone that I think can offer me the emotional support, without it getting confused with physical stuff.  And he’s kind of a cross between fantasy and real-life.  I referred to him once as “my ghosty best friend”… he passed away nearly 2 years ago.  I’ll save the details of that friendship for another day, but the memory I have of him… I can sit there next to him in the mountains in silence or in tears and it feels ok.

So I’ve spent a lot of time this week thinking about who I’d bring to the mountain with me and today I was having a bit of fun with it.  I thought it’d be fun and good for me to write it down.  GBF (Ghosty Best Friend) is the only real life person there right now… but…

My fantasy camp would be accessible through various secret portals that are only accessible to the people I’ve invited here.  It’s gonna get a little crowded in here, but it’s fantasy, so there’s plenty of room to go around.  (Yes, I AM about to go through a giant list of favorite book and tv characters so, buckle in!!)

OF COURSE, I have to start with…

BuffySeason8_40

Buffy Summers.

(I know, you were probably expecting someone else, but we’ll get there…)

How can you not feel safe with a Slayer on your team?  I mean, she’s saved the world, a lot.  She’s got the physical skills, and emotionally, she’s had to carry the weight of the world.  Buffy spends time at the camp training other Slayers and of course, ME, to fight.  Plus, we’re great pals 🙂

And while we’re in Buffy’s world… I’m going to have to invite:

images

Willow Rosenburg and Tara Maclay.

I’ve always felt an affinity for Willow and Tara is just plain the best.  Plus these girls have some real power between them.  They bring their awesomeness and magical knowledge to share with the camp.

images (17)

Oz.

He’s a musician, a werewolf, and all-around cool guy. I mean, Oz would be awesome to hang out with.   So,while he brings some physical skills to the table, mostly I just wanna hang out.

images (34)Rupert Giles.

Of course, Giles has to be there.  He just does.

images (50)angel-amy-acker-fred-illyria-dvdbash-wordpress26tumblr_lcj1nvLY5W1qecbnjo1_500

 Winifred “Fred” Burkle / Illyria.

In my fantasy camp, they coexist together.  Fred is basically the best, and Illyria is a badass.  What kind of super camp would this be without them?

angel1 buffy-cast-deaths-on-buffy-the-vampire-slayer-7050579-400-300

Anya, Angel, Spike, Cordelia, Lorne, Faith…

and basically the rest of the team, ’cause I wanna be Scooby.

MOVING ON!  (Man, this list is going to get long….I really wanted to list everyone individually, but I’m finding this to be soooo time consuming because I don’t know how to format this page properly!  haha… I think I might have to do more group listings…)

5x10-Abandon-All-Hope-supernatural-9123856-1280-720

Sam and Dean Winchester, Bobby Singer, Castiel, Ellen and Jo Harvelle.

“Family don’t end with blood…”

These guys have all given everything to save the world… they don’t have much, but they have each other.  And they’re gonna go down fighting.  I’d want every one of them on my team.  These guys could probably teach me a thing or two about fighting, too.

John_and_MAry_in_nursery  tumblr_inline_nm6qx5XYyT1rfvmaxsupernatural_118469_top tumblr_miymwoOjAg1qcm0jmo1_250

Young John and Mary Winchester, Charlie Bradbury, Gabriel, and Chuck Shirley.

Ummm, you’d be crazy not to want Chuck on your side 🙂

Charlie- you are my heart and soul and you will live happily ever after at camp!

MV5BMjAyMDQ4NDY1Nl5BMl5BanBnXkFtZTcwOTUwODkwOQ@@._V1_UX214_CR0,0,214,317_AL_ tumblr_nio7meSL551qmt0lco1_1280

Osric Chau and Kim Rhodes

As much as I love their characters on SPN, mostly I just want them to join my camp and be my friends.

NEXT UP:

TV Show-Firefly-759

Um the whole crew from Serenity?

I feel this needs no explanation.

Lev40

Also the Leverage team.

I just want to be part of the team 🙂  It looks like fun…

Ok.  I am NOT done with my fantasy camp invitations.  But I’ve totally run out of steam 😦  This is fun though.  Building my own little world… maybe I can imagine a safe place after all…

To Be Continued…!

My tip for today…

Watch Sense8 on Netflix!  Really really beautiful awesome show.  Will be soooo disappointed if it doesn’t get picked up for another season.  You get a fairly full story with what is there now, but so many places they could take this story from here.  Just, awesome.

 

Enjoy your burrito…

Enjoy your burrito.  Enjoy my burrito.  God knows I’d like to.

It may be necessary to explain this phrase, especially if you’re not the nerd I am:

Enjoy your burrito

Nerdist Presents: Enjoy Your Burrito

And damn, if that’s not good advice.  But… it’s not really working.  I think I found a more appropriate description to how I feel these days….

(Watch the video, read the lyrics and watch it one more time.  You think this bit is about comedy, but the whole damn thing is much, much deeper and I think every word is a metaphor for something else…)

It takes a couple minutes into the song, but this is what my burrito is like these days:

Lyrics by Bo Burnham

Can I say my shit?
Can I say my shit?
I’ve got lots of shit to say
I’ve got lots of shit to say
I can’t fit my hand inside a pringle can
I have a huge amount of trouble
Fitting my hand inside a pringle can
I can get my hand like four inches in
But then I have to tilt the can into my mouth
But then a bunch of crumbs have accumulated at the bottom of the can
So they all go spilling onto my face
What I’m trying to say is that the diameter
Of pringle cans are way too small
I’ll say it again
The diameter of a pringle can is way too small
Two raidiuses of a pringle can is way too small
If you feel me, put your hands up
Come on!
If you feel me, put your hands up
Look at all these hands that are way too big to fit inside a pringle can
Those hands are too big to fit inside a pringle can
Your hands are too big to fit inside a pringle can
You think you can, I know you can
Pringles!
Listen to the people, I am sure ninety percent of the complaint letters you get
Are about the fucking width of your cans
We’re not animals
Okay, I’ve overdone the pringles thing
Sorry
I want to have a daughter
I want to have a daughter
So I can finally have someone around the house who can fit their hands
Into pringle cans
Yes, I’m still on the pringle cans thing!
I will move on, alright?
But that is priority numbero uno
I don’t go to the gym
Because I’m self concious about my body
But I’m self concious about my body because I don’t go to the gym
Isn’t that- That’s irony
Irony can be painful
Alright, let’s do this
Let’s do this!
I went to Chipotle
I went to Chipotle
And I got myself a chicken burrito
I went down the line, and I got all these ingredients
And at the end of the line
The guy tried to wrap the burrito
But half of the shit inside the burrito spilled out
I was like, dude you should have warned me!
You’re a burrito expert
You should have told me halfway through!
Hey, man. You might be reaching maximum burrito capacity here
Do you fucking think I want a messy burrito?
No one wants a messy burrito
The whole appeal of the burrito is that all of the ingredients are contained
Within the confines of the tortilla
I wouldn’t have gotten half of the shit if I knew it wasn’t gonna fit inside it! Alright?
I wouldn’t of got the lettuce if I knew it wouldn’t fit
I wouldn’t of got the cheese if I knew it wouldn’t fit
I wouldn’t of got the peppers if I knew it wouldn’t fit
I wouldn’t have got
Half of it
I’m okay with small mistakes
If you’ve got no more chicken, I’ll take pork
But I’ll blow my dad before I eat a burrito with a fork
I wouldn’t of got the lettuce if I knew it wouldn’t fit
I wouldn’t of got the cheese if I knew it wouldn’t fit
I wouldn’t of got the peppers if I knew it wouldn’t fit
I wouldn’t have got half of it right
Half of it right
Half of it right
Half of it right now
I think it’s time I
Think it’s time I think we’ll break it down

Put the lotion in the basket
No, they’re too young
I can sit here and pretend
Like my biggest problems are
Pringle cans
And burritos
But the truth is, my biggest problem is you
I want to please you
But I want to stay true to myself
I want to give you the night out that you deserve
But I want to say what I think
And not care what you think about it
Part of me loves you
Part of me hates you
Part of me needs you
Part of me fears you
And I don’t think that I can handle this right now
I don’t think that I can handle this right now
I don’t think that I can handle this right now

I don’t think that I can handle this right now. [x2]
They don’t even know the half of this right now
Look at them, they’re just staring at me
Like come and watch the
Skinny kid with a
Steadily declining mental health
And laugh as he attempts to give you what he cannot give himself

I don’t think that I can handle this right now. [x2]
They don’t even know the half of this right now
They don’t even know the half of it
But I know I’m not a doctor
I’m a pussy who puts
On a silly show
So I should probably just shut up
And do my job
So here I go

I wouldn’t of got the lettuce if I knew it wouldn’t fit
I wouldn’t of got the cheese if I knew it wouldn’t fit
I wouldn’t of got the peppers if I knew it wouldn’t fit
I wouldn’t of got half
You can tell them anything if
You just make it funny
Make it rhyme
If they still don’t understand you
Then you
Run it one more time

I don’t think that I can handle this right now. [x2]
If you think that I can handle this right now
Then you don’t even know the half of this right now
Right now
Now
Handle this right
Handle this right
Handle this right now

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