Monthly Archives: August 2013


Really not okay since therapy this morning. Normally I’d call my team leader, but she’s away on vacation. I don’t really feel like I could talk about this with the other people on my team. And it’s almost the weekend, and I’ll be all alone.

I tried taking a nap. I tried knitting. I tried watching DVD’s. I tried playing dumb iPhone games. I tried reading. I tried looking at pictures of cute baby animals. I tried taking a PRN. I’m doing all the things I’m supposed to do, and none of it’s helping.

My head is all chaos and I have a pounding headache that Tylenol doesn’t touch and someone in my head–maybe me, I don’t even know anymore–wants to slice me up because then the feelings would stop.

I wanted to stop freaking out in therapy this morning. I knew I could–I’m good at shutting down feelings, but I didn’t really want to do that. I wanted to survive it and let it pass without doing any lasting damage. That’s what I really want. I keep getting told that the feelings pass, but they never seem to for me. Or at least, it takes a hell of a lot longer for me than other people.

I keep thinking I’m faking it for attention but then why couldn’t I even keep my eyes open. Name three red things in the room, five purple things, four brown things. That’s all she was asking me to do. If I made it all up, then why did that freak me out so much I couldn’t do it?

But why would that freak me out? Why would that freak anyone out? It happened at Sheppard Pratt a bunch of times too. It was terrifying and overwhelming, but I felt like my therapist there would get mad at me if I didn’t do what she said. She’d just keep pushing and pushing, so I’d name whatever things in the room she asked, but there was this rage because she didn’t understand how terrifying it was and I couldn’t tell her. Somebody HATED her, wanted to scream at her whenever she made us open our eyes.

I don’t understand it.

I don’t understand most of what’s going on right now. I think I know what set all these bad feelings off, but I don’t know what the feelings are or why I’m having this specific reaction or how I can survive it.

I just know I hate this.


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Today is the 50th anniversary of the March on Washington and Dr. King’s “I Have a Dream” speech.

I grew up in Birmingham, Alabama, a city that played a huge role in the civil rights movement. That was before I was born, but I remember. I can’t know what it was like to be there then, but I’ve walked through Rosa Parks’ bus, I’ve sat in the jail cell where Dr. King wrote his “Letter from a Birmingham Jail,” I’ve been to the 16th Street Baptist Church. Just knowing the history makes me cry.

And it’s not over. I went to high school in downtown Birmingham, and I remember Klansmen from around the country marching through our streets. I was afraid I’d throw up. Birmingham is still segregated by socioeconomic class, which often splits along racial lines. State politicians brag about having harsher immigration laws than Arizona, designed to force Hispanic immigrants to “self-deport.” There are Confederate battle flags and gun racks on so many white men’s pickups. An amendment to the state constitution removing racist language about separate schools resulted in a version of the constitution that says no one is guaranteed a public education. Homophobia is publicly acceptable. Women are marginalized by the demands of being a quiet, obedient, polite Southern lady. New laws have shut down the abortion clinic that survived Eric Robert Rudolph’s bombing.

Pay attention, Birmingham. Remember your history and let yourself feel the pain of it. And please, please stop repeating it.

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Hope and Trust

I started the Humira yesterday. No improvement yet, but it’s still early. The GI doc was really hopeful that it’ll put me into remission.

I saw my psychiatrist this morning. Several weeks ago, he had me do a stool and saliva sample to ship off to a lab that does a detailed GI panel. Most of it was unremarkable–no parasites, no food allergy antibodies (but I was already on such a restricted diet that you wouldn’t expect to see those). However, I did have really high candida counts and moderately high H. pylori.

The normal protocol for H. pylori is a triple antibiotic cocktail, but antibiotics could cause worse GI symptoms. For candida, the usual treatment is a course of diflucan, but my psychiatrist isn’t sure how that would cause problems with the UC or the meds I’m taking for it. So S is going to get in touch with my GI doc and see what he recommends.

In the meantime, he did recommend a probiotic with Saccharomyces boulardii. It’s a particular strain of tropical yeast that wipes out candida, and there are a number of double-blind, placebo-controlled studies showing it helps with a bunch of different GI problems that involve diarrhea as a primary symptom, including UC. I’m already taking a probiotic, but it doesn’t include Saccharomyces boulardii. I’m going to Whole Foods tomorrow to check if they have it.

I’m also looking into trying acupuncture–there’s a clinic here that does it on a sliding scale. I’m skeptical, but I figure I don’t have much to lose. I started out being very skeptical about my psychiatrist’s alternative/functional medicine stuff, but once he found my motherfucker gene and started me on the treatment, my mood improved drastically. I’m less skeptical than I used to be but still skeptical-ish. But there’s no real downside to trying acupuncture, especially since it’s cheap.

So I’m hopeful.

I also had therapy today. I’m starting to feel like we’re getting somewhere. A’s methodology is different from Sheppard Pratt’s–she hasn’t really pushed getting more communication with parts, and she tends to back off when things get rough instead of pushing me more. There’s wisdom in that, since I’m not inpatient and don’t have 24/7 support if the shit hits the fan. On the other hand, I’m frustrated because I feel like I should be doing more and getting further, but I need someone to push me because I won’t do it on my own.

Sometimes, though, I feel like I want her to push me because I know it’ll hurt like hell. I feel like I’m supposed to be in pain. I don’t do it to myself anymore, but if someone else does it to me, that’s okay. If I’m in pain, then it’s safe to breathe again. Obviously, that’s not therapeutic, so I’m trying to be okay with slower work in therapy.

A wants me to tell her when I’m having a strong emotional reaction in session, even if I don’t know why or even what I’m feeling. Naturally, that makes me want to run away. I feel like I have to understand it before I can even consider talking about it. Otherwise it feels too vulnerable. But A does understand that it’s very hard for me, which is good–less pressure that way. Still, the whole idea makes me really anxious. I’m not good at trust.

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Paper Doll

BF told me he’s probably moving to NYC at the beginning of next year. At first that was okay–we’ve done the longish-distance relationship thing before. There are trains I could easily take to go down for the weekend or whatever.

But he just assumes I’ll move there with him. Granted, I have no idea where the fuck I’ll live after the end of the year or how I’ll afford it, but still. He just assumed. Didn’t ask me what I think or what I want. I know I’m making him sound selfish, and he’s not. I think he just forgets I’m a real person sometimes, and that hurts. Too many people have intentionally made me a non-person, and even though with BF it’s not malicious, it still hurts intensely.

I’ve fallen in love with Massachusetts. I didn’t realize it until I thought about leaving. I knew I’d never go back to Alabama, but I didn’t realize I’d gotten so attached to Massachusetts. Back in the winter, A asked me how I pictured a satisfying future, and I told her I wanted to end up living in Boston eventually. Maybe I’m as guilty as BF–we were having problems, and he wasn’t included in my fantasy future. Just me, but now I can imagine him in that future. I just can’t imagine it in New York.

I feel like I’d drown there. Disappear. There’s just so much of it, so many places and people, and I can’t ever imagine feeling safe there. It makes me cry just thinking about it. It’s so hard for me to feel safe, and I finally do. BF doesn’t understand that. He can’t. He hasn’t been traumatized, and he’s a man. It’s different for women–we’re taught our entire lives that everything is dangerous because we’re small and weak and there’s always some big man out there who wants to hurt us. BF has never had to live in a state of constant hypervigilance and fear. It takes so long for me to feel safe, and I don’t think I could ever feel safe in NYC. And he can’t understand that.

But it still hurts. And it hurts that he didn’t even ask me how I felt about it. Of course he’s entitled to make his decisions about his life without my input; that’s not what bothers me. It’s that he includes me in it without asking what I think.

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Better Day

Doing a little better today. Got zero sleep last night, but the asthma’s cleared up some.

My whole therapy session today was me venting about how I don’t want to be a sick person but I’m always sick these days. I was trying to explain to her that I feel like I don’t know myself anymore–the body I was used to is suddenly foreign. Body image isn’t quite the right term because it’s not about appearance, but my relationship to my body has changed in ways I don’t like or even understand yet.

Annie commented that it’s odd that I didn’t see myself as a sick person, since I’ve had some major health issues. I hadn’t thought of it like that before, but I guess it is sort of strange. But the other stuff wasn’t as disabling as the UC. I grew up with the ear infections, surgeries, and hearing loss, so that was just my normal. The symptoms from my AVM weren’t severe until I started having seizures, and then it was quickly diagnosed and treated. With the motherfucker gene, all I have to do is take pills. The back injury would’ve been pretty disabling, but when it was bad, I was so depressed I didn’t want to get off my sofa anyway, so it didn’t bother me too much.

But the UC, damn. It’s way better than it was, but I still have pain most of the time and have anywhere from 3-8 BM’s a day. On bad days, I can’t leave the house because I might explode if there’s not a bathroom available as soon as the need hits. My diet is severely limited, so even with supplements I’m malnourished and chronically dehydrated. Zero energy. And oh my god, my FARTS. You can’t even comprehend the magnitude. Most of the time I can’t hold them in or even make them silent, and half the time I have to dash to the bathroom because I’m not sure if I’m gonna fart or crap my pants. My farts could knock a herd of cows out cold.

But I saw the gastroenterologist this afternoon, and he seemed very hopeful about getting me into remission. He said there’s a very high probability of achieving remission with the combo of the 6MP and Humira. This was a doc I hadn’t seen before–I’d been seeing an NP at the practice, but she wanted me to see an MD because I’m a difficult case. (I would get the most severe, hardest to treat form of UC because I don’t do anything half-assed. [Sorry. Poop jokes are my coping method.]) I liked this guy. He was thorough and explained things without talking down to me. I’ve been happy with this practice–their office staff are terrible with organizational stuff, but the actual medical people I’ve dealt with have been great. The NP actually called two different times to see how I was doing. I’ve never had a doc/NP/medical person do that in my entire life. After yesterday’s clusterfuck at the PCP, I was dreading this appointment, but it ended up good. Not a single hint of “it’s all in your head.” I mean, it is kind of hard to chalk up the colonoscopy results to OMG TEH CRAZYYYY.

I should get my Humira tomorrow, and I have an appointment Monday so the NP can teach me how to give myself the shots. The 6MP can take several months to start working, but the Humira works a lot quicker. Once it goes into remission, then we can start weaning me off some of the meds slowly–the GI doc said hopefully I could get down to just the 6MP. He said he’d taper me off the budesonide first, then the mesalamine, then maybe the Humira, depending on how I feel and how my labs look. I would love to be on just the 6MP, and he said he’s seen patients have 20 years of remission this way. That would be amazing. I will never take normal pooping for granted again!

So I’m feeling much better than yesterday, emotionally, and the asthma is somewhat better. My psych nurse is going to call my psychiatrist in the morning and get him to give me something for the asthma. I’m sure he’ll be willing to do that–he’s written me scrips for non-psych stuff in a pinch before. A gave me the name of a primary care practice she’s had good luck with, so maybe I’ll see about switching to a PCP there. I’m feeling a lot more hopeful about life.

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Stigma and Medical Treatment

I’m really not okay.

I got an appointment at my PCP’s office today about the asthma. It was with someone who isn’t my usual PCP, but I assumed it would be okay because I haven’t had issues with my PCP.

Yeah, not so much with the okay.

First, the nurse’s aide made several comments about how many meds I’m on. NOT YOUR FUCKING BUSINESS AND NOT APPROPRIATE JUST TAKE MY BLOOD PRESSURE AND GTFO

Then the NP just blew me off. All she did was listen to my lungs, which doesn’t necessarily tell you anything about asthma. You can have normal, clear lung sounds and still have asthma–and I TOLD her the wheezing only happens occasionally, the main problem is chest tightness/pressure.

She told me, “It’s just anxiety. Just try to relax and breathe normally.”


Then she flat-out refused to do any testing or prescribe me anything to help. She told me to go home and breathe into a paper bag.

I’m sure if I didn’t have a mental illness, she would’ve done something. But no, I don’t deserve real medical attention because I’m obviously just an attention-seeking crazy person.

C, my team leader, wanted to go in there and argue with her and demand that she do something, but I begged her to just take me home. I knew I was going to start crying, and if I did it in the doctor’s office, they’d just interpret it as proof that I’m crazy and not sick.

I give up. I’m just fucking done. This is a HUGE trigger for me, and I just can’t deal with it. It’s pushing me to the brink of suicidality, and I’m having a hell of a hard time resisting the urges to cut. I’ve been crying on and off all day.

I think I need to find a new doctor. True, this wasn’t my regular PCP, but it’s hard to get appointments, so sometimes I have to see someone else in the practice. And I can’t/won’t accept being treated like this. I don’t even know how to go about finding a doctor who’s not prejudiced against people with psychiatric diagnoses. And I can’t take any more trial and error.

Fuck. Just fuck everything. I’m trying so hard to hold it all together, but I just don’t know how much longer I can pull it off. I’m sick all the fucking time, and now I’m being treated like I’m faking it and being refused adequate medical care. This should make me mad at the NP, and it does–but mostly it makes me feel like I should kill myself because I don’t deserve to be alive.


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Exhaustion and Hopelessness

The cold is mostly gone, but the asthma is getting worse. My nurse, S, wanted me to go to the ER, but I said no. They probably would’ve just blown me off like urgent care did last week. I do have an appointment tomorrow at my PCP’s office–not with the doc I usually see, but hopefully that’ll be okay. They’ll probably want to put me on prednisone, but it makes me psychotic and suicidal.

And I have the GI appointment Thursday to start the Humira. Fun times. Who needs an immune system?

I just don’t think I can take much more. I’m sick all the time, and I don’t have the energy to do anything. This isn’t really a life.

I’ve been thinking somewhat seriously about stopping all my meds and just letting it kill me. It’s not like I’m really living. I want a life so badly, but I can’t tolerate any more of this. I can’t keep pretending I’m strong and brave. I’m just not.

It didn’t help that I had a terrible therapy session, either. A kept pushing me into talking about something I’ve told her several times I don’t want to talk about because I can’t deal with the feelings it would bring up. She pushed, and I shut down. I could see it happening, but I didn’t even try to stop it. I remember bolting out of there at the end, but most of the rest of the session is gone. I don’t want to go back.

Basically, I don’t want to do any of the things I should. I just want to lie in bed until I disappear.

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Physical or Psychosomatic?

I’ve had trouble breathing intermittently for around two weeks and coughing for about a week. I went to the doctor last Thursday, but I don’t think she believed me. I wasn’t wheezing, and my O2 sat was normal. I told her most of the time it’s not wheezing, it’s feeling like somebody’s squeezing my lungs so I can’t get a breath. My inhaler helps a little, but not well enough or long enough.

Now I’m doubting myself. Could it all be psychosomatic? I’ve had that happen before when certain memories come up.

My father’s favorite torture method was oxygen deprivation. My first split, when I was three, happened when my father nearly drowned us in the bathtub. He would sometimes cover my mouth and pinch my nose shut, and other times he’d smother me with a pillow. I’d do whatever he wanted if he’d just let me breathe.

But those memories haven’t been coming up for me. I guess it could be a part experiencing it, but I don’t feel like I’m getting passive influence. But dissociation is weird, so it could be that. It would explain why my breathing sounds good and my vitals are normal and my inhaler isn’t working. All that makes sense if it’s all just in my head.

But it could be a real physical issue. It wouldn’t be the first time a doctor’s blown me off because we all know psych patients never get sick, don’tcha know. I’ve got complex medical issues, and the doctor could’ve missed something. She said if I needed my inhaler more than twice a day, I should go to the ER. But I don’t think it’s that serious, and I don’t want to be treated like a hypochondriac again. I’m going to talk to S, my nurse, about whether I should make an appointment with my PCP, but it could take a while to get an appointment.

I just wish I could determine if this is physically real or psychosomatic. I’m going to talk about it tomorrow in therapy, but I don’t know if A will have answers. How do I tell?

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Ready to Scream

Since apparently severe ulcerative colitis wasn’t enough to deal with, now my asthma is flaring up too. Had to go to urgent care this morning because my PCP couldn’t see me until next week.

But urgent care sucks. The doctor didn’t believe me because I wasn’t wheezing right then. I TOLD her I’d used my albutetol inhaler right before I came, and it’s always worse at night. She kept staring at our scars. She asked why I didn’t just go to my GI doc (for asthma?!) or PCP. Well, gee, sorry for coming to a medical practice for medical treatment. She was snippy when I said I had to use the inhaler three times last night and said I should’ve just gone to the ER. We just wanted to cry when we left.

I’m just totally exhausted from all the medical stuff. Some of it might be side effects from the immunosuppressant–waiting on lab results. But I just don’t have any energy. I almost started crying in the grocery store because I was so tired I could barely stay standing up, and I left without most of what I needed. I need more spoons–just getting out of bed and getting dressed uses up all my spoons most days lately. I hate this.

Sorry. I know I’m ranting about my health a lot lately, but I guess I need an outlet.


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Fighting Hopelessness

I’m at the end of my rope with the UC. I feel like I can’t take it anymore, but I don’t have a choice.

I put on an act most of the time: being brave, dealing okay with a sucky situation. I make a lot of poop jokes. And sometimes it is real. Sometimes I am brave and resilient.

But sometimes I’m not.

Partly I put on the act for other people, but mostly it’s myself I’m trying to convince. I want to be strong and brave and resilient. I want to be well enough adjusted to it that I can make jokes about it. Sometimes I do believe that about myself.

And sometimes I come home and sit on the toilet and cry. I feel like I’m losing my life to UC. Oh, sure, I’m still alive…but without the quality of life I need to be okay.

A lot of the time, I can’t socialize or exercise or grocery shop or leave the apartment or eat because the symptoms are too acute. Between the chronic dehydration, malnourishment, and side effects of the immunosuppressants, I have no energy. I’m in constant pain. I’m bleeding, although in relatively small amounts. I don’t sleep well because i have to get up and run to the bathroom, sometimes 10+ times per night. I take 12 pills a day for the UC, and I’m probably about to start giving myself shots. I practically live in doctors’ waiting rooms and exam rooms.

I could deal with the appointments and the meds and the diet if it got my symptoms under control, but that hasn’t happened so far. It’s better than it was at the start, but it’s still taking over my whole life. I’m bordering on suicidal.

It triggers a lot of trauma stuff. Some of the symptoms, especially bleeding and rectal pain, are triggering, as are the medical exams. And there’s the overarching trigger theme: I have no control over what’s happening to my body. I hate it all so much.
And I feel like I shouldn’t talk about it—be brave and shut up. But maybe talking about it is another way of being brave.


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