Eff (it’s that day again)

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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)

 

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

Just a quick note…

I know I’ve been reblogging a lot.  I would like to write more… but a couple of things have kind of been in the way.  First- my big huge step last week.  Still no regrets.  But still having some anxiety anytime I sit at the computer.  Weird.  Every response I got to my post was WONDERFUL, but I wanted to reply to every comment and thank those who took the time to read my story and follow the links.  It just got kind of overwhelming when I started getting responses from people who didn’t know about my past and I felt I had to think more carefully about each response

I was really looking forward to therapy last week to show my therapist what I had posted.  He thought it was super great.  As he pointed out, I’ve been really stuck this whole last year (and longer, before I started seeing him) somewhere between flight and freeze.  He said I’d finally moved to Fight.  That doing what I did was Fighting.  And I totally agree it was a really healthy and necessary step for my own healing.  But it kind of makes sense that I would Fight a bit, then retreat back to safety, which is kind of what I’ve done.  Knowing that I’m entering a new phase in healing, however small or large that movement is, has caused me a lot of anxiety.  As I’ve said before, I DO NOT LIKE CHANGE!  Even when it’s good, healthy, positive change, it is hard for me to adjust.  So… Anxiety- reason #1.

Also, the last few weeks, my shoulder pain has really started to flare.  It used to just hurt constantly at different levels, but give me 10-15 minutes on the computer and my whole right side starts to go numb.  So… having to be careful with that.  I also learned last week that I probably have Crohn’s, so taking any NSAID is probably not so good for me if I can avoid it.  That leaves me with Tylenol – which no longer works by itself- and oxycodone.  I tend to develop tolerance to almost any medication pretty quickly, so I have to try to keep my pain under control before it gets to the point I need a pain pill.  So- much less computer time for me.

I’m still going to be trying to catch up on everyone else’s blogs, just reading a lot on my tablet or phone, but probably won’t be leaving comments as often.  But if I’ve liked the post, it means I read it and I heard you.  And I might have to save some to come back and comment later.

Anyway- I just don’t want anyone to think I’ve disappeared or worry about me.  I’m doing ok.  Just have to get through this anxious period, which I think was both inevitable and probably a normal and ok response to events, and hopefully when I see my primary doc on Thursday we can come up with a new plan for my shoulder pain.  Because I don’t know what the HELL I’m going to do without being able to spend time on the computer!   AHHH.

Anyway, just wanted to check in with real words from me.   Probably you will see more reblogging for a while, and I’ll try to check in every once in a while.  I love what my blog has brought to me, wonderful people and ideas and a safe place to express my own stuff.  I refuse to give it up, shoulder pain or no!   Hope ya’all are doing well.  Love and Hugs tonight!

Hmm… I should add a fanvid, just for the hell of it.  Let me go find one (I promise it will be completely irrelevant to my post, just something I love and use to cope with!)

…….

Well I realized I don’t think I’ve ever posted a Doctor Who video, which is a shame!  And I had SUCH a hard time deciding which one to post.  But here’s the one I went with.  Doctor Who is awesome (though I have to admit my fangirl shame:  I have never seen the old series, just the new series starting with Christopher Eccelston as Nine. SO FAR!  Someday I will watch them all.)  If you’ve never seen it, give it a try… but give it a few episodes.  It’ll be nothing like you expect, but it will grow on you and live forever!  This vid features my personal favorite doctor, Ten, played by David Tennant, who, well, just, yum,  Also, I think the vidder, Seduff, does an excellent job, so just enjoy, and have a smile for me 🙂

Why do I keep using the #AlwaysKeepFighting hashtag…

Why do I keep using the #AlwaysKeepFighting hashtag? Welcome to the #SPNFamily…

A couple of months ago Jared Padalecki, one of the stars of Supernatural, started a campaign to raise money and awareness for charities like To Write Love On Her Arms.  He shared a lot about his own struggles with depression and suicidal thoughts, and his own need for strength and help.  It started with a tee shirt that said “Always Keep Fighting”.  The fandom really took to it.

AKF

For me personally, I came across the Always Keep Fighting campaign on a really really shit day.  It was really one of those days where I just was asking “What the hell am I here for?”  And those words, and his openness and sincerity, actually brought me to tears.  It was just one of those moments you get too rarely when you feel like the world is telling you something.  And I was like… “Man, Jared!  How did you know I needed this today?”

I’m actually sort of addicted to buying geek t-shirts.  It’s pretty much all I wear.  But I usually go for the subtle.  Not the whole- “celebrity on a t-shirt” thing.  Even Jared mentioned he wasn’t sure about putting his face on the shirt, but everyone convinced him it made it more personal (I agree). And… while I wasn’t sure if I would wear it (because- face on a t-shirt?), I knew I wanted to support it and TWLOHA.

It’s kinda become one of my favorite shirts.  When I’m having another shit day, wearing the shirt has reminded me of the message and kept me going.  And people have noticed it and either recognized it themselves or asked about it.  Which is awesome!  YES.  Let’s have a healthy dialogue about mental illness, suicide, addiction, depression, PTSD.  YES TO ALL THIS!

Since the original campaign ended, it has grown into a much bigger thing that both stars, Jared and Jensen Ackles, AND the fans are continuing to raise money and awareness for.  In the last couple of weeks, Jared has been experiencing his own personal crisis and the whole thing has just blown up in response (in a good way).  It’s actually kind of reminded me how awesome people can be.  The world is not full of hate and horrible things.  There is a lot of love out there.

https://fangasmthebook.wordpress.com/2015/05/19/what-the-spnfamily-is-all-about-always-keep-fighting-jared/

If you’re not familiar with these guys and this fandom, it might be easy to see this and think that it’s not sincere.  That it’s a bunch of hot guys getting their faces on t-shirts and making more money.  Publicity stunts.  But you wouldn’t have to look into things very far to realize these guys really just want to do a good thing and use the fan following they have to accomplish great things.

You might also find some weird stuff.  The fandom is known for some of it’s weird stuff.  Not gonna lie.  BUT the fandom really is also known for doing some really awesome things like this.  The official hashtag used to be “SPNfamily” (I don’t know, maybe it still is…) but #AKF and #AlwaysKeepFighting are really what it’s all about.  And hell yes, I will go down with this ship.  Even if I still appear to be a silly fangirl.  I don’t care.  This thing, this show, these people, this fandom, show love that gives me strength on days I’m not sure I can find it.   (Even though I will NEVER forgive you, writers, for that THING YOU DID IN EPISODE 10×21.  grrr… the only time I’ve ever hated Show :/  I’m still not over it.)

PHEW.  SO on that note, I’m gonna leave another reason I love this fandom.  I haven’t posted a fanvid in a LONG time guys.  And this one is technically a parody, so it doesn’t count.  And, true, I’m not sure you’ll really get it or love it if you don’t know the show, but… oh well.  It makes me happy 🙂 ummm spoilers for season 9 and 10 though, if that is important to you?

By the way, the cast cameos at the end- they heard about this video being made and totally volunteered to do it just because they knew the fans would love it.  No pay.  Just love.

And you know what?  Because I’m in such a giving mood… hahah… (actually, it’s probably just the late hour getting to me) but I’m gonna leave ya with one more gem.  But this is one that always gives me chills and makes me cry.  This song is sort of our anthem…

Ok.  Thank you.  Good nite.  I love you all 😉

Philip’s story: My ostomy became my blessing | The Stolen Colon | Crohn’s ileostomy IBD

Philip’s story: My ostomy became my blessing | The Stolen Colon | Crohn’s ileostomy IBD.

 

I hope someday I can feel this way.  Not there yet, but it’s good to hear from those that do get there.

The sun starts to cry…

Holy anxiety, Batman!  Been back and forth to bed a few times and it’s not taking so I guess I’ll write.  Sometimes that helps.  A while ago I mentioned a video that gets my little PTSD heart all teary.

Try to forget that this is a Supernatural fanvid.  It’s sort of “alternate universe” anyway, but it shows this character who has literally been to HELL and seen all sorts of awful in his life.  And then see him trying to live a normal life.  Wake up in the morning… those moments you lie in bed, wondering how you’re going to get through another day.  Then putting on your best face and going to work.  Then the moments when that unreal reality sneaks its way through.  And you try to lose yourself in the monotony of repetitive tasks, till another reminder finds its way in.  See the contrast between the memories and the present day… and how the memories themselves seem to be an alternate universe.  Not really real.  Not until you are reminded again.

This video could possibly be trigger-ish for some, so keep that in mind before watching.  For me, this was like finally being able to SEE the experience that just doesn’t have words.  It was affirmation.  But it is somewhat graphic and I don’t want it to be something that causes a flashback or anxiety itself.

video by Loki/SecretlyToDream “Till the Sun Starts To Cry”

The first time I saw this video, I cried and cried.  It was beautiful to me and I couldn’t stop watching.  I would be REALLY interested to know what ya’ll think.  Does it still translate if you’re not familiar with the show?

Taking space

So… I haven’t dropped off the face of the earth 🙂  I’m still around… The last couple of weeks have been just really overwhelming to me and I’ve had trouble finding both the energy and words, so I avoid.  I am very good at that.  I avoid so well that most of the time I don’t even know what it really is that I am avoiding.  But it wears on me the longer I do it.  Tonight, I just feel a very heavy heart.

I don’t do very well with identifying my own pain.  It’s very rare that I can sit with it when I find it.  On the rare occasion in therapy that I let the tears flow, there’s a quick moment where I mentally go, “hey I’m crying, well this is good…” but then it’s gone.  And I cannot reconnect with it.  I can talk about things and share the stories of my life, but it’s like they happened to someone else.  It’s really really rare that I can share the story and the emotion in the same space.  I just don’t know how.  But I’m really good at feeling pain for others.  Hearing other stories and feeling anger, helplessness, sadness, pain for what others have experienced.  This isn’t necessarily a bad thing.  Empathy is one of the things I love about myself.  But I don’t balance it well.  And I think the more I am running from my own stuff, the more I allow it to overwhelm me.

I love this blogging space that I’ve discovered.  I started writing for me, and never really expected to connect so strongly to so many people.  And I love the interaction I have had with so many people here.  I’m grateful for it.  And I’m not going anywhere 🙂  But if it seems that I am around less or commenting less, it’s because I have to respect the part of me that is overwhelmed with so many things right now- things that are mine and things that are not mine.  I’ll still be reading though… I love all of you I have connected with.  And I love reading what you share.  I’m just working out my shit 🙂

Hopefully I’ll be able to write more soon, too.  I love being able to share here.  It’s become really important to me, this space and all of you who are reading.  Just needing some time to separate the words from the feelings, I guess.  Thanks to everyone who continues to follow and support – you mean the world!

 

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