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.

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The Moment to Fight (IBD part 3)

So I’m hoping I can get to the present time with the rest of my IBD story in this post.  After the 2nd surgery, I had a really rough time.  I felt sick and weak all the time, like I was going to pass out at any moment.  I also found that the more exhausted I got I would start throwing up or dry heaving.  Even taking a shower was difficult.  After about a month, I found I had an abscess in my stomach.  So I had to start antibiotics for that.  Cipro and Flagyl.  I have since found that taking antibiotics in high or regular doses for an extended period of time gives me HUGE anxiety.  I don’t know why but I want to crawl the wall and rip my hair out.  It’s awful.  My surgeon ended up admitting me for a few days because by that time I was incredibly dehydrated and still had the abscess.  They gave me a PICC line (which is kind of a long term IV that goes up through your upper arm and a tube is inserted right near your heart).  I was able to get fluids and antibiotics through the PICC line daily for a couple of weeks – I’d just go into the infusion center everyday and have it done.  WORLD OF DIFFERENCE.  I finally started to feel human again.  I was still having trouble with my ostomy which now leaked constantly.  I’m not kidding that I figured out what sort of appliances I needed to fix it just about a week before takedown.  I still have so many different ostomy supplies sitting in a box it’s not even funny.  Part of me still worries though that I’ll need them someday and they are frickin’ expensive!  So, not ready to get rid of them just yet.

Anyway, the abscess set my take-down back an extra month but by mid-march I was ready!  I headed into what was supposed to be a short surgery, but because I had so much scar tissue, again, it took much longer than planned.  And I ended up with a VERY large incision in all the way up past my bellybutton.  I used to think it looked sort of like a vine with the staple scars and used to think about getting some sort of flowery tattoo there, but it has faded a lot in the last year.  It again, took me about 10 days for my stomach to start acting right again but I felt like a new person when I left.  They told me the first few months could be difficult and they weren’t kidding.  I still had bowel control problems and a lot of pain.  “Butt Burn” is a common gift you get with a J-pouch.  This is because the Large Intestine no longer absorbs the enzymes your stomach produces and so your stool really irritates the skin.  You don’t travel without Desitin or something, ever.  Lydocaine, Calmoseptine, I’ve tried a lot of creams!

Unfortunately it started to seem like things were getting worse, not better, as time went by.  I was constantly needing pain meds, which no one wanted to give me, but I had fissures and hemorrhoids and just pain all the time.  I finally told the doctor I was about ready for a permanent ostomy.  I just couldn’t take it anymore.  After another exam, she decided she could remove the hemorrhoids, possibly fixing the fissure, and we would give Humira a try, just as one last shot before the ostomy.  FINALLY, things started to get better.  I still have some control issues, but it’s nothing like before.  I don’t leave the house without my emergency kit (change of pants, depends, wipes, and cream) and I still hate traveling.  I usually take a lot of meds to slow things down and stop my bowel action so I can get out and about with a little less anxiety.  It’s never a sure thing, and sometimes I think there’s a good chance I will still have an ostomy in the future.  But right now, the Humira is helping.  Before Humira I was in the bathroom at least 30 times a day, now it’s about half that and it’s possible the j-pouch will continue to improve.  So FINGERS CROSSED!

I know I didn’t go into a lot of detail about the procedures, but that’s because there are much better blogs out there than mine for that- Before surgery, I read http://www.bloodpooptears.com and then I relied a lot on http://www.j-pouch.org.  Both sites gave me a lot of info on what to expect and what to keep expecting as I am still making this journey.

For me this has just been a long, exhausting, confusing couple of years.  Life has changed.  I have changed.  I’m still trying to figure out who I am now.  But I’ve survived this long… I intend to keep doing it!

——————————————

While I was in the hospital and sick at home, I watched a lot of Firefly and Buffy the Vampire Slayer.  A lot of people don’t get why I love these shows, but this is the video that tries to explain it, I guess.  Heroes that keep fighting.  It’s also one of my absolute favorite fanvids ever.  So hope you enjoy…. “The Whedonverse: This is War” by MrMorda898

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