Monthly Archives: July 2013

I Don’t Know

Got a call this morning from my GI doc to see how I’m doing. I was impressed–in 27 years of life, with a host of medical issues, I’ve never had a doctor call to see how I was doing.

She wants to start me on an immunosuppressant called 6MP. (Stands for mercaptopurine, I think, or something equivalently non-English and unpronounceable.) But it can take two or three months to work, so in the meantime she’s going to start me on either Remicade or Humira. I have to get a TB test first, though.

S, my psych nurse, got my appointment moved up to tomorrow. I won’t be able to get the TB test before then, so I don’t know if she’ll be able to start me on anything new yet. I told S she didn’t need to move the appointment up, but I think my team is more worried about the symptoms than I am. Don’t get me wrong, it sucks a lot, but I think I’m just more willing to tolerate it.

Which is maybe an issue, actually. I don’t want to bother people about moving appointments up, pushing for more aggressive treatments, and so on. I’d rather deal with the physical symptoms. I guess I feel like I don’t deserve to get relief or be advocated for.

Most of my therapy session was spent talking about the physical issues–or, more accurately, the emotional toll. I guess I seemed pretty shut down to A when I first came in.

“How are you feeling?”
“I don’t know.”
“How do you think you’re feeling?”
“I don’t know.”
(Her dog comes over to me for petting.)
“Do you miss your dog?”
“Do you want to talk about it?”
“Not really.”
“How do you feel when you think about talking about it?”
“I don’t know.”
“How do you feel about me asking?”
“I don’t know.”
“Glad, sad, mad, scared?”
“I don’t know.”

I wasn’t trying to be difficult–I really didn’t know what I was feeling. Still don’t. That’s unusual for me, and it’s been happening a lot since I went to the trauma unit. I had several similar conversations with my therapist there.

I know I’m feeling things, but from a long way away. Like when you can hear music but too faintly to identify. I’m supposing this is a DID thing and a part(s) has the feelings. I don’t know what to do with that. Dr. M would be pushing me to let that part talk in therapy, but A hasn’t done that. I could be wrong, but I get the sense she’s more comfortable talking ABOUT parts rather that TO them. But I haven’t actually let parts out in therapy with her, so I could be totally wrong.

I think I must’ve been sharing time in therapy. It’s not as bad as when I was at the trauma unit; there I often forgot all or most of my therapy sessions. I remember most of today’s. I know I talked about how the UC symptoms are controlling my life, and I remember talking about the scary meds they’re going to put me on. I remember a rant that climaxed with, “And I just have no control over my body, and that’s too much like the past!” I know there was more to that, and fear and frustration and hopelessness, but I can’t remember what I said or how A responded.

I’m just tired. I shouldn’t have to deal with all of this, but it’s not like I really have a choice.

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Relevance: Physical and Emotional Illness

I got copies of my medical records from the hospital stay where the UC was diagnosed, and I read through them after kung fu–at least the parts I could understand.

It was not confidence-inspiring.

There were a lot of mistakes. They said I was bipolar when it should’ve been major depression. They said I was on meds I wasn’t on and left out meds I was on. They misstated when I had brain surgery–by THREE YEARS.

I was very sick and in excruciating pain, so I might not have communicated as clearly as I normally would–but I know I still communicated better than THAT.

The other thing is that every single record–by five different doctors, a PA, and an NP–stated prominently that I have an “extensive psychiatric history.” In all caps sometimes. Seriously. That’s not me being melodramatic.

Yeah, I have a psych history. Yeah, it should be mentioned in my chart. But do you really need to make it such a big deal? I had five myringotomies and an adenoidectomy, and that was mentioned once in my chart. I had a congenital neurovascular defect that required brain surgery, and that’s mentioned twice. A genetic defect that keeps my body from processing folic acid, which can cause (among other things) colorectal cancer–mentioned once.

But we gotta make sure we put PSYCH HISTORY on every page in big bold letters. We’d make them blink like a bad geocities site if we could do that in Microsoft Word. It’s very, very important for everyone to know that SHE HAS THE CRAZY, since that obviously has so much to do with the fact that her colon is trying to kill her.

And people say there’s no stigma around psychiatric illnesses anymore. They mentioned my psychiatric illness more times than they mentioned the fact that I was losing tons of blood or the fact that my blood pressure crashed down to 60/40. More than things that were medically relevant to why I was in the hospital.

It’s complete crap. And trust me, I know all about crap of both the literal and metaphorical varieties.

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Illness, Silence, Invisibility

I’ve got to find some better ways to deal with the UC symptoms. They vary in intensity, but they’re always there.

And I’m about to have a sobbing meltdown about it.

I just feel like my life is so restricted now. There are days I can’t leave the house because I can’t be sure there will always be a bathroom immediately available. When I’m not having diarrhea, I’m farting. A lot. Loudly. So then I’m too embarrassed to go out, and then I feel stupid because it sounds like such a silly thing to be upset about.

When I do manage to get out, I’m still limited. Going out to eat is a common social thing, but it’s all but impossible now. I was already vegetarian, but now I can’t eat dairy, eggs, gluten, nuts, corn, raw fruits or veggies, cooked veggies with seeds, caffeine, or artificial sweeteners or dyes. When I go to a restaurant, I have to quiz the server in detail about the ingredients of anything. That makes me feel like an asshole and a freak.

I also feel like I talk about it too much. Part of me needs to talk about it because it’s new and scary and life-altering, but another part wants me to stop talking about it and just deal with it on my own. No one wants to hear about your colon, Hope, so would you please just shut up already. Everybody is sick of listening to you whine.

I believe my illness should be so invisible no one even knows I’m sick.

Wow, okay. Starting to notice a theme here: I feel ashamed and guilty for my illness.

I guess it makes sense. When I was a kid, my mother got angry at me for getting sick, like I did it on purpose to inconvenience her. She often accused me of faking. When there was proof that I was sick, she’d tell me I was exaggerating it for attention. Guilt and shame right there, ladies and gentlemen.

But do you think you’re free?

I think I recognize the patterns of my nature.
But do you think you’re free?

–Louise Gluck, from “Mutable Earth”

I think I recognize the patterns of my nature, but I do not think I’m free.

What do I do with that?


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Finished a book for a friend’s birthday. Fabric over cardboard, Coptic bound with white waxed linen cord.





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This is an excerpt from a journal entry I wrote while I was at Sheppard Pratt, about a week before I discharged. I was really struggling and told my therapist I was done having feelings. She asked why I kept coming to therapy, and this was my answer.

Why do you keep coming to therapy?

Because I’m stupid.

Because no matter how hard I try not to, I still believe in the possibility of hope.

Why do you keep coming to therapy?

Because what the hell else is left for me to try.

Because if you’re falling off a cliff, you might as well try to fly.

Why do you keep coming to therapy?

Because I’m needy.

Because I want somebody to fix me.

Why do you keep coming to therapy?

Because I want to make my life work.

Because I want to finish undergrad, go to law school, and get paid to argue with people.

Because I want to feel satisfied with my life.

Why do you keep coming to therapy?

Because maybe one day I won’t hate myself anymore.

Because maybe one day I might even like myself.

Because I want to be able to imagine that concretely, not just abstractly.

Why do you keep coming to therapy?

Because I haven’t seen the stars in months.
(And now, each night I count the stars.
And each night I get the same number.
And when they will not come to be counted,
I count the holes they leave.

Nobody sings anymore.

–Amiri Baraka, from “Preface to a Twenty-Volume Suicide Note”)

Why do you keep coming to therapy?

Because maybe if I dismantle myself bit by bit, I’ll find out what is inherently wrong with me.

Why do you keep coming to therapy?

Because I want somebody to tell me there’s nothing inherently wrong with me.

Why do you keep coming to therapy?

Because maybe there really isn’t anything inherently wrong with me.

Because I hear a voice telling me that OF COURSE there’s something wrong with me.

Why do you keep coming to therapy?

Because I want someone to tell me I am irreparably broken.

Because I want someone to give up on me.

Because I want to give up on myself.

Why do you keep coming to therapy?

Because I want to get angry at somebody.

Because I want to scream at somebody.

Because I want to hate somebody.

Because I want to hurt somebody.

Why do you keep coming to therapy?

Because I want somebody to get mad at me.

Because I want somebody to scream at me.

Because I want somebody to hate me.

Because I want somebody to hurt me.

Why do you keep coming to therapy?

Because there’s so much I need to say.

Because I can’t find the words or even the language to say most of them.

Why do you keep coming to therapy?

Because I have no idea what else to do anymore.

Because no matter how many breaths I take, there’s never enough air anymore.

Why do you keep coming to therapy?

Because I can remember the months I was happy.

Because for a few months, I was a real person.

Because I remember the warm humming energy I’d never felt before.

Because I remember when the river and the dogwoods and the crocuses were so beautiful I almost cried.

Because I’ve said to myself, “I fucking love my life,” and for once in my life I wasn’t being sarcastic.

Why do you keep coming to therapy?

Because I want to be understood.

Because I want to understand myself.

Because being understood and understanding myself both terrify me.

Why do you keep coming to therapy?

Because I’m scared all the time.

Because I don’t want to be scared all the time.

Because the possibility of not being scared scares me.

Because I can take down a man and I know 11different ways to break his arm, but I’m still scared all the time.

Because I’m angry that I’m scared all the time.

Why do you keep coming to therapy?

Because it’s exhausting to have to be on guard all the time.

Because it’s lonely to have to be on guard all the time.

Because I hate having to evaluate people first as potential threats and only then as people.

Why do you keep coming to therapy?

Because I want to be curious instead of fearful.

Because I want to feel safe in the world.

Why do you keep coming to therapy?

Because I want to hide.

Because I want somebody to come and find me so I know I matter.

Because I want to feel like I don’t have to hide anymore.

Because I want to believe I deserve to be seen.

Why do you keep coming to therapy?

Because I’m a black hole.

Because no matter how much people offer me, I swallow it all up and I’m still so empty it hurts.

Why do you keep coming to therapy?

Because I want to be able to breathe again.

Because I want to see the stars again.

Because I want to believe there is the possibility of hope.

Why do you keep coming to therapy?

Because I don’t want to be alone.


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Since I’ve been home, I haven’t been doing a bunch of things that I know are helpful–internal communication as a daily habit, art, journaling. At the hospital, everything was scheduled, and it was easier because there were far fewer distractions.

Now, at home, I just have no motivation. Nobody’s pushing me, so I just don’t do anything. I want to, kind of, but maintaining status quo is easier. I made a schedule for myself and even put reminders in my phone, but when the time rolls around, I turn off the alarm and go back to playing solitaire or whatever meaningless activity.

I’m so frustrated with myself! I know doing these things will help, I even WANT to do them, but I just never do. How do I make myself do it? I’m SO FRUSTRATED–I should be able to just do it!

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A crafty recovery: knitting as therapeutic and meditative vehicle

I love this post!

I learned to knit when I was in long-term residential treatment. The joke was that anybody who stayed past the initial six week evaluation period either took up smoking or knitting, and I’ve never liked smoking.

Knitting helps me control compulsive skin picking and hair pulling. When I’m stressed, scared, or even bored, I pick or pull. Having knitting in my hands lets me get that energy out of my fingers without doing something self-destructive–it’s actually productive!

It also helps me feel connected to people I care about. There are a lot of days when I feel isolated, lonely, and unlikable. Knitting for someone else makes me remember why I like the recipient enough to give them something I may have spent dozens of hours making. I remember why I love them, and I imagine how happy they’ll be when they receive the finished project. It rekindles the connection to people I love and who love me.

Everything Matters

handsBy Heather Buchler

My grandfather had a woollen mill, and the whole family knitted – my mother and her four sisters, her mother, and also my grandfather. If anyone called around to visit while he was knitting, he would quickly hide his work under a cushion. My mother taught me to knit when I was five years old. I still have the fair-isle bonnet that I did when I was about seven. It looks pretty lame, but it reminds me of what I could do then. I knitted obsessively all through my childhood, adolescence and young adult years, and then I took a big break from it when other things took over.

I picked it up again during the throes of benzo withdrawal, on the urging of a friend. When I found myself very ill and traumatised, I needed something to fill in my days besides colouring in kids’s…

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Today our sister became a policeman She went to college for it, and then to policeman school too. I know we’re saposed to be happy and proud for her and we are but…

But also sad and mad and hurt and scared. Cause our daddy was a policeman too and he’s the one that did most a the bad stuff to us. Our sister was the one who told about it first and then we started remembering about it too. We tried to make some different policemen get him in trouble for it but they didn’t cause they believed what he said stead of us. Then our sister said our daddy never did anything bad and then he gave her lots of money. Then we didn’t talk about it to our sister anymore cause Sara says maybe that’s how she has to deal with it and it’s OK cause we love her.

But maybe now she’s mean like daddy too cause she’s a policeman just like him. And we fel a lot of mad cause we don’t want her to be a policeman! They’re scary! I think she should stop being a policeman but she’s not gonna cause she doesn’t care about us!

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Good thing I’m not squeamish

I had this creative writing teacher–the department chair, actually–who told us once that the difference between fiction and life was that fiction has to make sense.

She also told me, a number of times, “Hope, you can never write autobiography. Nobody would believe it.” If I ever do write a memoir, I swear that’ll be the title.

So today’s episode of “nobody would believe it”:
I had the GI appointment. She had me go get a bunch of lab work done, including a stool sample. I couldn’t produce it on the spot, so they sent me home to do it, with orders that the samples had to be returned to the lab ASAP after their production.

I thought the lab closed at 5:00. I produced my sample around 4:00, but my ride got held up because they’re doing roadwork on pretty much every road in town. We finally got to the lab at 4:45.

But the lab closed at 4:30.

You have GOT to be kidding me. I’m standing here holding a bag of my poo. (Okay, it was in specimen tube things. I didn’t just dump it in a sack.) It’s literally 100 degrees outside, and I need to give this poo to someone before it spoils or whatever.

S and I are just standing there giggling. Then she realizes the lab is part of the local hospital network and suggests seeing if the lab in the actual hospital is open.

It is. So I walk up to the desk and basically ask the lady if I can give her my poo. As long as you’ve got the lab order slip, she says. I do, so she takes my poo.

It was kind of surreal. I’ve heard of leaving flaming bags of shit on people’s doorsteps, but this is a new and different variation on the theme.

You can’t write autobiography, Hope.

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Illness, Medical Treatment, and Stigma

I see the gastroenterologist in the morning, and I’ve been worrying about it.

I’m not all that worried about the actual UC. No, what I’m worrying about is whether I’ll have to deal with mental illness stigma.

I can’t really hide my mental illness. For starters, I’ve got a ton of old self-harm scars. They can’t be mistaken for anything else, and they show if I’m not covered from wrist to ankle. And even if it were long-sleeve weather (it’s definitely NOT), the doctor would know as soon as she looked at my med list.

That shouldn’t be an issue, but it is in way too many cases.

When I was in the ER just prior to the UC diagnosis, I had so many obviously serious symptoms, so they didn’t try to tell me it was all in my head. But the prejudice amongst many medical professionals against people with mental illness wouldn’t give up that easily, no sirree.

A young woman–possibly younger than me, either a med student or an intern–was taking my history. They knew I’d come from an inpatient psych unit, no secrets there. I was on IV dilaudid and still in excruciating pain, so I wasn’t all there to, but I can easily imagine to people without a mental illness reacting like that to those circumstances.

At the end of the history, the 13-year-old in the white coat leaned forward and said, in a very patronizing tone, “Is there anything you’d like to tell me?”


“Are you sure?”

I could tell she was trying to get at something, but I had no idea what. “Uh…yeah….”

She sent my escort out of the room, which isn’t supposed to happen–everyone knows the crazy people need babysitters. “Are you sure there’s nothing you want to tell me about?”

I remember wanting to have some snappy zinger to toss back at her, but my brain wasn’t exactly working at maximum efficiency. “Yeah.”

“What did you take?” She sounded absolutely sure she was right, so condescending she sounded almost smug.

“Nothing. They’ve got all the meds locked up.”

Even if I had been administering my own meds, there was no scientific/medical reason to suspect my symptoms were caused by an overdose–or anything else self-inflicted. Yes, I have psychiatric disorders, and yes, I used to self-harm as part of my symptomology–USED TO being a very important phrase here.

If you hear hoof beats, think horses, not zebras. Yes, I suppose there’s some chance that my symptoms were self-inflicted, but a much more likely explanation was that I was suffering from a serious physical illness.

The same woman later interrogated me for 15 minutes about why I was at the trauma unit, including pressuring me to share graphic details of the abuse perpetrated against me.

Then she asked me if I had any stress in my life.

Really? THAT’s what you’re gonna ask me? Are you fucking serious? Yes, I have stress in my life. It’s about 5 foot 2, standing next to me, and wearing a white coat.

I’m afraid I’ll have a repeat of that with the GI doc tomorrow, and I really don’t need that kind of crap right now. Or ever, come to think of it.

Why is this kind of prejudice so prevalent and tolerated among medical professionals? It’s incredibly dehumanizing and potentially life-threatening. If I know someone is judging me because of my mental illness, how am I supposed to trust them to take care of my physical illness?

Psych patients have physical illnesses just like “normal” people, and they usually didn’t cause it themselves.


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