Monday, November 26, 2012

Why PTSD/DID Mess You Up With Tube Feedings

Many have wondered "what's the deal with Danielle" lately.

Short recap:

• I have PTSD and DID. I was sent to a nephrologist.

• The NP for the nephrologist insisted on a pelvic exam (which I'd never had due to above issues) To which I said "No"

• The NP said she just wanted to look -- NO TOUCH. To which I agreed.

• She lied. Then the alters came out.

• Now alters RARELY let me "out"

• I am undergoing Freudian psychoanalysis to work through the "issues".

Today was ROUGH. I had been going on <35cc/hour of fluids during the day and feeds at night. Then, one of my alters (Hailey -- age 9) started to freak out about the pain and another issue and turned everything down to 10cc/hour. Then, nothing.

Nothing. For 5 days.

It should be mentioned here that I am fed AND hydrated through a J (jejunostomy) tube. I drain 24/7 through my G (gastrostomy) tube.

I had psychoanalysis today with my psychiatrist. For the first time in three weeks "I" showed up to the session. Which was HELPFUL since I had a *lot* to tell her. One of the main things was I'm fairly sure why they -- and I -- cannot tolerate the feeds or fluids sensory wise

This was bound up in so much shame that I had to whisper what my hypothesis was. She could not hear me so she motioned me closer. I think she was trying to get me to scoot my chair closer to her desk, but instead I knelt on the floor right in front of her desk and only allowed my eyes to peek over the edge of her desk. To which she insisted that I at least meet her eyes (HARD TO DO) and whisper if I wanted. So as not to trigger myself.

This is a trigger warning. If you have PTSD or any type of dissociative disorder and are VULNERABLE or struggling in ANY WAY, DO NOT READ THE BELOW ITALICIZED TEXT. I will alert you to the end of the trigger so you may read on past the trigger

This may or may not make ANY sense to you, but here goes. If you have chosen to read this, I would ask that you not judge my experience, nor the experience of people who share a similar story.

My tube feedings and hydration make me feel physically sick and cause LOTS OF PRESSURE and pain in my GI tract. So, think ladies, if your STOMACH feels full, and your INTESTINES feel even more full...what is right below the intestines?

Yup. The place where no one is supposed to touch you unless you have given them permission.

After squeaking this out to my psychiatrist, she said this line of thinking is VERY COMMON in small children (especially those who have been abused). Unfortunately, this line of thinking has never resolved because I never was able to process this experience with anyone else before.

I had whispered this out to her not only because of the DEEP SENSE OF SHAME I felt, but also because I did not want to trigger myself. Heh. Nice try. I totally triggered myself and lost about 15 minutes of the 60 minute session. All I remember is afterward -- back in my chair, my stuff in the wrong chair, and my psychiatrist calmly telling me who popped out and little tidbits of information. No mention of stuff anyone believes I am ready to hear.

End Trigger

So the problem is how can we get fluids and nutrition into me without triggering all this turmoil. I asked my psychiatrist and she couldn't think of a good answer. up at local ER. For fluids and IV meds and all that junk.

We're entering a state of emergency. It has been discussed that it's time for a central line since we seemed to have lost PIV access. We use the feet OR NECK now exclusively. There is a rare fellow that uses a blood pressure cuff and squeezes it as tight as it will go, blow several veins ("but I saw it! It was there..."). Idiot. Not to mention multiple bruises due to blowing 5 veins on one arm and six of the other. There is still some awkward places they can get it sometimes, but it is becoming much fewer and farther between.

The next thing is IV hydration at home. They are insisting on D10 saline. Which burns in a PIV, but GI says via CL it isn't that bad. And the potassium and other stuff won't be as bad either.

And then, he doesn't write the order :facepalm:, rather, he passes the buck to PCP. Who will, I'm sure, pass the buck over to someone else. And in this process, they will scare the living daylights out of all of us, but nothing will happen. Which, oddly, I am ok with.

I am sick of it. I don't even want to MESS with this stuff anymore. So what if I dehydrate? So what if the body shrivels into nothing? I DON'T WANT TO CARE ANY MORE.

And yet...I cannot allow myself that kind of pity party for more than a few moments. And I try. I really do. I start just my own rehydration solution at 5cc/hour. But I can feel it. And I cannot allow myself triggers that I know about (there are probably SO MUCH I don't even know about. Which causes the switching).

Fact is, I have to be "here" as much as possible or I will be sent off to another group home. And I HAVE to get Home Health approved as well (which will include visiting RN's, PT, and OT in my home as opposed to the clinic) otherwise I will be sent to a skilled nursing facility.

Unfortunately, the stims have returned. It isn't a technique I choose, but I have to do this to combat switches in mid conversation or transitioning from inside to outside, whatever. Stimming is probably a half dissociative behavior since this was something I did very frequently as a child through the early parts of adolescence.

Unfortunately, the stims have gotten more violent, since I cannot feel them when I am fighting to stay "here" as an alter is battling to switch. I've had caseworkers and staff here in the building try to curtail those stims, and if they TOUCH me to MAKE me stop...there I go. Second star to the right and straight on till...who knows when? I am gone and there are only three people I (they) know that can bring me back.

And that is all.

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