Blank

I was an empty canvas, I had finally started to paint.

At long last I’d found courage to take up the task,

And I did slowly learn to create.

 
Bit by bit, I shed the scales of fear, but I had only just begun.

A toe, just tipped in the water, years of hiding to be undone.

 
I might have been so beautiful, but you broke into my place.

And I never can stop asking “what else might have been built within my space?”

 
And so, a toe pulled back, hiding  again in fear.

Burrowing ever so deeper to find some safety, even still, after all these years.

 
And yes, I am enraged when I let my fear be known

How else should I expect to feel, when my life has never been my own?

 
You held a fragile piece of what just might have been,

And with a mighty force you shattered it, brought the creation to an end.

 
And so I stand here, a painting I cannot complete.

At times I want to take up the brush, but my will’s become so weak.

 

… A brush here, a dab there… still I paint the best I can…

With hope one day this painting can still reveal exactly who I am.

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Holy shit the WHY

Even if nothing else in this song made sense, WHY is perfection.  There are no other words.  Which is good, ’cause I’m still short on them.  Just holy shit, the WHY.  (Flaw- Fall Into This)

“Fall Into This”

Torn away from all that matters
And led by the wrong intentions
I know it wouldn’t be too easy, not yet
To go somewhere I’m afraid of
It’s made of…

Thoughts I’m receiving, making me say
That I know I’ll just be there once again
Lord I’m lost and then I’m tossed
Thoughts I’m receiving, making me say
That I know I’ll just be there once again
No…

Wrong, nothing really matters
If I was gone, would it make you any sadder?
I feel half as good as normal, you know
To steal – what to steal – what’s already taken
Here I go again…

Thoughts I’m receiving, making me say
That I know I’ll just be there once again
Lord I’m lost and then I’m tossed
Thoughts I’m receiving, making me say
That I know I’ll just be there once again

I think you know,
That you did this to me
I think you know,
That you did this to me
I think you know…
That you did this to me, you did this to me!

Why?!
You did this to me, I just want to know
Why?!
You did this to me
And it starts

God I’m losing sleep again
God I’m losing sleep again
And I feel my way
Thank you for making me talk
God I’m losing sleep again
God I’m losing sleep
And I failed, I think you know

Eff (it’s that day again)

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)

 

These Precious Things

These precious things
Let them bleed
Let them wash away
These precious things
Let them break
Let them wash away
These these precious things
Let them bleed now
Let them wash away
These these precious things
Let them break their hold over me

(Tori Amos- Precious Things)

Think I’m on to something,…?

So much has changed this last week.  Internal changes.  Things shifting and circling.   It’s kind of been a lot of personal enlightenment, all at one.  Shifting, circling, new perceptions, understandings… SO MUCH.  And I really wish I could write about it right now.  But it’s so overwhelming I can’t even think to put the words to it,

I will say that I watched “The Fault In Our Stars” twice this week. and it has changed my life.  That sounds sort of cheesy if you’ve seen it… but it really really has.  I want to write, but  I’m still sorting.  Hopefully things settle a bit soon and I can try and make sense of it all.  I know it’s all good shifts, but it gives me anxiety anyway.  Been hard to keep my brain unoccupied enough to sleep because it keeps dwelling on this stuff.  But I think I’m on to something….!

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.

So many things…

I’ve been putting this off and putting it off for so many reasons.  None of which have anything to do with this.  I love blogging my ups and downs.  And I’ve really missed it the last couple of months.  But I haven’t really been in a great place, and you know how it is… well at least for me, I tend to hide until the shit goes away or it’s really repressed enough that I can just pretend to be normal and ok.  But that hasn’t been happening.  Instead, more shit just keeps appearing.

I’ve been kind of aware of some of what I’ve been hiding from.  But a couple days ago I totally broke down and admitted I hate this ostomy.  (Surgery went find, medically speaking, my ostomy is great and my health is much improved.)  But mentally, I’m not dealing with it as well as I thought I could.  See, when I was raped 16 years ago, the ONE thing I found was that I could survive anything.  I made that my rock.  It was my foundation and I built my world around it.  No matter how bad it got, I survived that, I can survive this.  It rather pisses me off that this lifesaving ostomy that I should be grateful for is causing that foundation to crumble.  I literally found myself praying to die the other night.  I don’t pray.  And I knew the prayer was pointless because God doesn’t answer my prayers.  But I felt so alone.  Even though my dear husband spent half the day with his arms around me in support… I feel pointless, I feel cheated.  For the first time in my life I hate my body.  I can’t bring myself to take a shower.  It’s so strong.  I know I need to, I get all my stuff ready, slowly, but when it comes down to it, I just can’t.  I hate dealing with the ostomy in the shower.  So I go a week without it, until my hard-wired need to meet certain social expectations finally wins out, and I force myself through it.  Purely so I can go to therapy the next day and keep my secret that i am barely holding it together.

Right now I feel jealous of everyone who is dead.  It was just a year ago one of my best friends took his life and all I can think is that I wish I could trade him places.  And Hope… dear Kyra.  I feel terrible that she felt so alone.  One of the first things I found out when I started reading blogs again was that she was gone.  It broke my heart.  She was the first person to ever follow my blog, comment… and hers was the first blog I ever followed.  She wa such a beautiful, intelligent person. and I’m sorry she’s gone.  And yet I can’t help but envy her just a tiny bit.  And I feel terrible about that.  Sometime I want to punch myself in the face for being so done by sometimes comparably small things.

 

My therapist thinks maybe its time I consider ECT.  I’m beginning to think he’s right, though I have mixed feelings about it.  I know some of you, my readers, have had it, and I would really appreciate some feedback.  If you feel like you don’t want to share on the blog, let me know and we can email each other or something.  I really want to know all the good and all the bad before I make a decision like this.  But something’s gotta change ’cause I can’t keep playing by the rules.  I’m just done.

High Hopes

New plan.  Post before reading.  I get so into reading what everyone else is writing and then I can’t find the words to post about my own stuff.  So here’s the dealio:  As I mentioned before, I’ve been sort of overwhelmed with some things.  My parents were here a couple of weekends ago, which was great- they came specifically to help me clean up and organize my apartment (Trust me, I needed outside help!).  But I was so sick the whole time.  I didn’t want to eat, I didn’t want to do anything, I couldn’t sleep, and dang it, throwing stuff away is HARD for me.  It was work, just sitting there watching my mom go through stuff asking me if I was keeping this or getting rid of that.  So I was exhausted after they left.  Slept for like 24 hours after that.  (But my apartment looks much better now, less depressing, so thanks mom!)

Anyway, I’ve just been getting sicker and sicker.  Feeling crappy more often than not.  No appetite, losing weight, not sleeping, more pain.  I finally heard back from my surgeon who had taken my biopsy slides and history to a “conference” she has with other IBD specialists in the area.  They all pretty much agreed that I had chronic pouchitis and it wasn’t going away.  I could keep trying to treat it medicinally, but she (and they) felt like it was really only worth it if I needed that peace of mind of feeling like i had exhausted every single option.  They all felt that it would probably end the same way- needing to have the pouch removed and having a permanent illeostomy.

I had already decided after the miserable weekend with my folks, I was having surgery of some sort.  I am just too exhausted to keep going like this and to not be able to enjoy spending time with loved ones.  We moved to this town a year ago and I literally don’t know anyone here because I rarely leave the house.  No friends.  No family.  Just the hubster- who is wonderful and all, but ya know we need more than that.  So I’d been doing the research.  I spent a lot of time over at jpouch.org and I did a lot of research on k-pouches and the BCIR.  These are basically similar in that they still use an internal pouch like I have with my j-pouch, but instead of wearing an ostomy bag, you plug a catheter into it to empty a few times a day.  But no outside appliance to wear.  So it sounds pretty good.  But I can still get pouchitis with it and likely would since I’ve had it already.  The pouchitis might cause symptoms like cramping, stomach pain, and fatigue but I wouldn’t have to worry about urgency and continence anymore.  The other drawback is that there are only a few places that do k-pouches or BCIR.  And if I have a problem then I have to fly to wherever I had the surgery done intially to get it fixed.  So it could end up being costly and still not resolve some of my main issues, namely the fatigue.

So I had a lot of decision making to do there.  But I’ve decided the traditional illeostomy has the best chance to make me feel better so that’s what I’m doing.  (It’s possible I may be able to try a k-pouch later down the road, but that depends on different things.)  So Nov 7 I am having the surgery done.  When I come out of it, I’ll have a hole in my stomach with my gut sticking out and what they call a “barbie butt”.  Yeah.  They’re gonna totally sew up my back end.  Which, I think right now, is bothering me more than anything.  And it’s really hard to put words to it, but I think that when you’ve survived bodily trauma, you become extra protective of your physical identity.  And now, once again, I feel like life is just laughing at me right in the face.  Growing up LDS, you’re told “your body is a temple; that’s why you don’t get tattoos and piercings, etc”  But I feel like “God/life/chance/universe/whatever” has done more damage to my body than anything I have ever chosen to do.  At least when I get a tattoo or pierce my nose, or color my hair blue and green, it’s my choice and it comes from a place of honoring my body and the person who lives in it.

*sigh* I’m delving into a new topic there… anyway, bottom line.  Big life changes goin’ on, and I HATE CHANGE.  Do NOT WANT.  But such is life… mine anyway.

=-=-= For the record, I do know that some people out there have it far worse or have had similar experiences.  It’s not the end of the world for me.  It’s just tough going through and I need to talk about it somewhere!

I’m going to add this video.  The song has been in my head all day… it makes me grieve for lost innocence and lost dreams… and… just makes me feel so many things.

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