Tag Archives: ibd

Existential Boredom

I’m not as intensely suicidal anymore, but I really just don’t see the point of being alive.

Since the election, I have nothing to do with my time.  Literally all I do is sit in bed all day and waste time on my computer.  There is no point to my existence.

Nothing holds my attention.  I try to knit, to watch Netflix, to read, to write.  Nothing interests me.  I force myself to do it, but that doesn’t work for very long, and there are so many hours to fill.

And I hurt.  I don’t know what it is with the roving joint pains–one joint will hurt badly for weeks or sometimes months, and then for no reason that pain will stop.  Soon it starts back up in a different joint.  Right now it’s my left wrist again.  I have a brace from when I sprained my wrist doing kung fu, and it helps some…but it makes it hard to type or knit.  And my belly hurts.  I think I might be heading into another UC flare, which is awesome, especially since I might have to come off the 6-MP soon.  I’ve spent the last two weeks telling myself it was just PMS-related mini-flare symptoms, but since my period hasn’t happened, I don’t think I can blame PMS.  Oh, and it’s IBD Awareness Week, so clearly my body has impeccable timing and a fucked-up sense of humor.

I barely have an appetite, either.  I mean, I get hungry, but I don’t eat for hours because I just don’t care enough to get food.  C made me a gluten-free vegan cheesecake a week ago.  Ordinarily I’d have eaten the whole thing in about two days (no judging), but I’ve still got some left over.  I’ve got a big container of Thanksgiving leftovers, too.  They’re good, but I haven’t touched them.  Oh, and there’s also lentil soup C made.  It’s not even that I’m too tired/weak to prepare anything–literally all I’d have to do was take them out of the refrigerator and microwave them.  But I just don’t care enough.

I’d fooled myself into thinking the weakness was getting at least a little better, but it turns out I only thought it was better because I didn’t do anything beyond sitting in bed and getting up to use the bathroom.  Yesterday I cleaned my microwave.  It took all of five minutes, and that’s a generous estimate.  But then I couldn’t stand up, collapsed on the kitchen floor, and had to crawl back to my bed.  How am I supposed to have ANY quality of life when I can’t even stand for five minutes?  I’m terrified that whatever’s going on is getting worse.  I still haven’t had any luck reaching my gastroenterologist for a referral to a neurologist.  I might ask C to see if my ex-nurse, S, can make some calls.  Often medical professionals get a much better response than patients–sad but true.

I’m just so tired of existing like this.  There’s no light.  I don’t feel an immediate need to kill myself, but I can’t just keep living like this, either.  I want to feel like there’s some meaning, but I can’t see anything in this fog.

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I’m Still Here

For now, at least.  I’m just tired of talking.  It doesn’t seem to get me anywhere; it just leaves me feeling more alone and hopeless.

Everyone wants to tell me I should live, and honestly, I just can’t take hearing it anymore.  That probably makes me an asshole, but I guess that doesn’t really matter anymore.  Maybe you’re seeing who I really am now, when I can’t keep up appearances anymore.  Maybe you’ll hate me.  Maybe it’ll make you understand why I can’t live.

I’m tired of people trying to fix me and solve my problems.  I’m pretty damn smart, okay?  And I’m pretty damn resourceful.  If there were resources to be found, solutions to be invented, I would’ve figured them out already.  I’m tired of being polite when people suggest the same things over and over.  Yes, I’m on disability and food stamps and Medicare and Medicaid, I’ve applied for energy assistance, I’m on the waiting list for housing, I’ve been to the food banks, I’ve tried the buses, I can’t afford paratransit.  I’ve tried forums and self-help books and support groups and CBT and DBT and EMDR and psychoanalysis and ECT and the Department of Mental Health and Community-Based Flexible Support.  I’ve been to respite, the ER, more psych units than I can count, two trauma units.  I’ve gone to church and prayed and mediated and done yoga and changed my diet.  I’ve been on antidepressants, anxiolytics, mood stabilizers, stimulants, and anti-psychotics.  I’ve taken 5-ASA’s and steroids and chemo and immunosuppressants and biologics.  I’ve consulted psychiatrists and chiropractors and reiki masters and neurosurgeons and physical therapists and acupuncturists and gastroenterologists.

Nothing helps enough to make my life survivable.

You can’t fix me because I’m too many problems to solve.  It’s depression and complex PTSD and DID.  It’s ulcerative colitis and hearing loss and brain surgery and mobility impairment.  It’s disability and isolation and poverty.

And you can’t solve just one because they’re just a big knotted mess.  You can’t untangle one thread from another; they’re all felted together now, and there’s no extricating them.  And nobody can fix the whole big mess.  Not even me.  I did everything I was supposed to do.  I tried so hard for so long, and things just get worse.  Now, I just can’t try anymore.

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Sick (of It)

I saw my gastroenterologist today.  I seriously love this guy–he’s the best doctor I’ve ever had.  He listens, he actually cares, and he works hard to find solutions.  I wish I could clone him for various specialties and just see clones of him with different specific knowledge sets.

(Admittedly, I also like him because he rants, so we’re kinda kindred souls there.  Today he ranted, without my even saying anything, about how poorly they treated me in the ER when I was there most recently, the debacle with the antibiotics that left me literally full of shit to the point of severe pain.)

He’s really concerned about the fatigue and weakness too.  I was afraid he was just going to blow me off since my labs all came back normal–god knows I’ve had plenty of doctors do that to me.  But he didn’t!  I cannot even describe the sense of relief there.  He didn’t just think I was a depressed hypochondriac!  I mean, that’s how all doctors should treat their patients, but sadly it’s very, very rare, especially if you have a history of mental illness.

In true House, M.D. fashion, he ruled out lupus and similar autoimmune diseases.  I made the joke, “Come on, Dr. House, it’s never lupus,” and he got it, so more gold stars in my book.  My sed rate and CRP (markers of inflammation) aren’t elevated, so it’s not likely to be another autoimmune disease, although he did say that it’s still possible we’re getting a false negative because I’m on immunosuppressants and steroids.

There are several possibilities he mentioned.  He seems to think there’s a strong chance that the 6-MP is causing this, but he’s not sure.  We lowered my dose the last time I saw him, 6 weeks ago, but I didn’t get any significant improvement.  But he mentioned possibly taking me off it altogether, which makes me nervous.  The combination of Humira and 6-MP is the only thing that’s gotten my UC under any sort of control, and I’m afraid I’ll get really sick again if I have to go off it.  To his credit, though, he totally understands that and is concerned about the same thing.

He also thinks it might be somehow related to my MTHFR polymorphism (aka the motherfucker gene).  For those of you who aren’t familiar with that, I have a genetic mutation that makes my body incapable of breaking down folic acid, which can cause problems from heart defects to depression.  My gastroenterologist was actually familiar with it because it also increases the risk of colon cancer, which is just awesome for me.  He said he’d need to do more research on that.  It’s still relatively unknown, and there’s not a lot out there from valid medical sources.

There’s also a small chance that this is somehow a result of my brain surgery, although that’s highly unlikely.  I was diagnosed with an arteriovenous malformation in the left frontal lobe of my brain when I was 17, after over a year of worsening neurological symptoms that got blown off because I was mentally ill and therefore assumed to be attention-seeking.  (See why I’m excited when doctors don’t blow me off?)  This is unlikely to be the problem since it was surgically corrected when I was 18, and my three-year angiogram (the definitive test for AVM’s) was clear.  There’s a very slim chance that the surgery could’ve left scarring or something, but the frontal lobes are mostly associated with executive function and language skills, not motor skills.  And since they only operated on the left side, any weakness would be on the opposite side of the body; i.e., my right side.  My weakness is bilateral.

The other possibility is something neurological, and since it’s not his area of expertise, my gastroenterologist couldn’t really speculate as to what.  So he’s sending me to a neurologist.  He’s going to talk to my primary care doc and see if they can find someone good for me.

GI Doc: “I want to find a neurologist for you who’s genuinely interested.”
Me: “By that, do you mean not an asshole?”
GI Doc: “Exactly.”

I know I should see this as a chance to maybe get some answers about what’s going on with my body, and maybe even treatment that’ll help.  But mostly I just don’t want to go.  All the tests, the pain the fear…and I’ll probably just find out I have something else incurable.  I just can’t deal with having anything else wrong with me.  I feel way too broken already.

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Ideology v. Survival

Today my psychiatrist told me I’m too sick not to eat meat on ethical grounds.

He’s a functional medicine guy, and I trust him about this stuff.  I’ve actually been thinking the same thing myself for the last few months, particularly with the anemia and the severe fatigue/weakness.  But I just can’t quite stomach the idea of eating meat again.

I’ve been vegetarian for more than ten years now.  For me, it’s an ethical and environmental issue, but even before I went vegetarian, I was never all that excited about meat.  It was never hard for me to give it up, and I’ve never missed it.  Now, the thought of intentionally putting meat in my mouth makes me feel queasy.  He wants me to start with bone broth, and that will be easier, I think–it should be easier because it’s not actual physical meat.  But I still have to buy bones and roast them and boil them.  Even that’s going to be hard for me.

My psychiatrist loves to tell illustrative stories.  The first one today was about a Russian Jewish soldier who was stationed in Siberia.  He wrote a letter to his rabbi to ask what he should eat because all they had was pork.  The rabbi’s answer was, “Eat the pork, but don’t suck on the bones.”

“The moral,” my psychiatrist said, “is you don’t have to enjoy it, but survival’s more important than doctrine.  We understand that.”  (I assume by the “we,” he was referring to himself as Jewish, but I got the odd impression that he might’ve thought I am too.  Not sure where he would get that from–I don’t think I’ve ever mentioned my own religious practices to him.  But whatever.)

Then he launched into a story about a former Karmapa (leader of a specific sect of Tibetan Buddhism).  Many Buddhists are vegetarian, but in Tibet that’s basically impossible.  So the Karmapa was traveling, and someone served him shrimp.  After dinner, they asked how he liked it.  He replied that he enjoyed the taste, but he was sad that so many living creatures had to die to make one meal  He said he preferred beef because one cow can feed a hundred people, so there’s less destruction of life.  “If I must eat meat,” he said, “I prefer beef.”

It was a strange conversation; my conversations with my psychiatrist usually are, but I like that.  But today, I had so much ambivalence it felt like I was being dragged in two different directions.  Not so much about food–about survival.  I don’t really want to survive…but on the other hand, since I’m still alive, I’d like to be slightly less miserable if possible.  So I bounce back and forth between feeling like it doesn’t matter since I’m going to be dead soon anyway and feeling like I might as well try because what else have I got to lose at this point?

So I’m just sitting in the middle, waiting.  I don’t even know what I’m waiting for.

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Collapse

So today I collapsed in the Walmart parking lot and proceeded to have a sobbing meltdown.  Apparently I’m one of THOSE Walmart people now.

I understand why it happened: I’m finally just getting over the sinus infection, I’m still dealing with the gut problems, and now I’ve got my period on top of that.  I could barely stand long enough to get from the bed to the bathroom, but this was the day C could take me grocery shopping.  I thought I could push through it.

Apparently I can’t.

I told her just to take me home, even though I hadn’t done any of my grocery shopping.  She offered to go into Whole Foods and buy my groceries for me, but I said no.  I just wanted to go home…but also I couldn’t come to terms with not being able to do such a basic thing for myself.  I mean, C’s not going to be around forever.  She’s not even supposed to be seeing me at all anymore, but we just mutually don’t mention that.

And next week I get to hear my gastroenterologist blow off my fatigue and weakness because my labs look fine.  I really like him for most stuff, but I feel like he just isn’t taking this seriously.  I mean, at my last appointment, I told him I have trouble standing up for more than 60 seconds, and he told me to reduce my dosage of iron.  I know I’m probably reading too much into it, but I keep thinking he thinks I’m just being histrionic because I have a psych history.  I really like him most of the time, but I don’t know how to make him understand how bad this is.

Maybe I just need to collapse in his office and start sobbing on the floor.  Too bad I can’t do that at will.

My RN friend is going with me to the appointment, though, so maybe she’ll be able to help get the point across.  Of course, then he’ll probably just send me to some other specialist, and that’ll take weeks to get an appointment, and then they’ll do tests, which will take more weeks, and meanwhile my level of functioning will continue to decrease.

Oh, and for added fun, it’s going to be yet another month before I can get my Nexplanon implant, too.  It has to be done during the first five days of your period.  I called today when my period started, but apparently their supplier screwed up.  They don’t have any implants, and the nurse couldn’t tell me when they’d be getting more.  And my NP wasn’t working today, so I have to wait for her to call me back tomorrow and find out what the hell we’re doing about that.  Or I may just beg her to do a hysterectomy if the pain doesn’t let up.

Could something, ANYTHING, please go right for me?

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I did a stupid thing

Saturday night, I overdosed.  And here it is Tuesday morning, and I’m still barely able to function.  I can’t spell basic words without a lot of thought, and I nearly pass out when I get up to go to the bathroom.

I’m not sure if I wanted to kill myself or not.  I was at least half-dissociated, so I don’t even know how many pills I took.  (Or, for that matter, which one[s] of us took them.)

I think I wanted either to die or to make someone notice that something is very very wrong.  But I ended up not accomplishing either of those things.  So I feel like a failure in every possible way.

I feel like I NEED someone to take care of me.  To hug me and tell me it’s all going to be okay, to listen when I’m freaking out, to take care of all the everyday things like bills and food that overwhelm me.  I want to go back to a residential program like Sheppard Pratt, but I can’t afford it.  I have maybe three weeks left of my lifetime inpatient days still left.  I can’t use those up now–what if I need them more later?  Besides, Sheppard Pratt always has a waiting list, and I need help now.

Everything about real life is just too overwhelming.  Most of it, at this point, comes down to money, and I feel greedy for saying that.  Money can’t buy happiness, but the lack of it sure can fuck you up.  If I had a car, my life would be so much easier.  I could get to appointments, to the grocery store.  Hell, I might even be able to have a little bit of a social life.  But even if someone gave me a car for free, I wouldn’t be able to pay for insurance, gas, maintenance.

And if I had more money, I could get more psychological support.  I wouldn’t be stuck with these useless people from DMH.  I would even be able to travel if I found one who’s good but not on public transit lines.

And I just wouldn’t have to worry all the time about everything.  Right now, all it would take for my whole life to blow up in my face is for one little thing to go wrong.  Just one thing, and I’ll be sleeping under a bridge in winter.  One little thing, and I won’t be able to pay for the meds that keep me alive.  This is the reality of my life.  More money wouldn’t cure the underlying emotional injuries, but it would make them a hell of a lot easier to deal with.

But that money, that help, that support–none of it is going to come.  How do I keep dealing with the utter hopelessness of that?  My compulsion is to berate myself, to tell myself, “You don’t need any of that.  You’re just a pathetic attention-whore who wants everybody to pay attention to her all the time.  You don’t deserve to have needs.”  And with that comes the impulse to starve myself again.  It would be so much easier, and it dulls all the feelings.  And it seems easier than staring at the black hole in the center of myself and knowing that no one will fill it.  I mean, when my own government tells me I don’t deserve enough money to be able to meet my basic needs, who am I to argue?

And on top of the money issues, there’s the chronic illness.  It’s never going to get better.  It will continue to control my life for as long as I’m alive.  I’ll have to keep taking toxic medications that make me almost as sick as the UC does, albeit in different ways.  I’ll always be in pain.  I’ll always be so weak I have to use a cane to walk and still can hardly manage even with it.  I’ll always have to control my diet so strictly I’ve given up on eating out.  I’ll never not be sick.  In fact, I’ll probably just get sicker.  There is no relief, no remission.

And this is where I’m stuck, all day, every day.  I’ve done all the things they’ve told me will make me better, and none of it is working anymore.  So I have to choose between living like this for another 60 years or killing myself.  I want to feel like there’s some reason to live, but right now the pain is so bad nothing matters except how to make it stop.

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Full of Shit

So I spent most of today in the ER.

If you recall, I’ve been on a course of Augmentin to treat The Sinus Infection That Would Not Die.  Generally, if people have GI side effects from it, what they get is diarrhea.  Given that I have ulcerative colitis, you’d think I’d be more prone to getting that particular side effect.

But you would be wrong.  Instead of pooping more, I stopped pooping altogether.  I went from six to eight bowel movements a day to no bowel movements for seven days (and counting).  When it was just constipation, I thought I could wait it out for the rest of the 12-day course.  Being constipated was actually a relief after a year and a half of excessive diarrhea.  But then the pain started, and it got progressively worse.  This morning, it got beyond what I could manage.  The combination of not pooping and worsening pain also made me worry about a bowel obstruction.

So I called C early this morning, and she dropped me off at the ER.  I was not very enthusiastic about going because my last several visits there were not helpful, but it’s the only hospital around.  The pain was bad enough that I didn’t think I could wait.

Luckily, this time was a good experience.  Good nurse, good doc, even a really sweet X-ray technician.  The doctor ordered Zofran and morphine without even making me ask, and there were no lectures on how I shouldn’t use the ER for pain management.  No one called me drug-seeking or implied that my problems were psychological.  It baffles me that I can have such different experiences at the same ER a few months apart.  It’s really hit or miss with this hospital.

Luckily, it turns out I don’t have a bowel obstruction.  I’m just literally full of shit, which is not my usual problem.  But I have magnesium citrate and Colace, and hopefully those will solve this problem.

But I guess I now have to list Augmentin as another drug allergy.  (No, I know it’s not technically an allergy; the only medications I know I’m truly allergic to are NSAID’s.  But I use the “drug allergies” list as a “don’t give me these meds or I’ll end up in the ER” list, so Augmentin apparently belongs there.)

I’m exhausted, so I’m going to try to sleep.  And hopefully I’ll be able to poop soon.  I don’t want to have to go back to the ER.

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Comparing Disabilities

I’m so tired of people comparing and ranking different types of disabilities.

Particularly, I’m frustrated that people with psychiatric disabilities keep saying that it’s worse for them because they can’t talk about it, whereas people with physical disabilities can.

I get that there’s a lot of stigma against mental illness.  I live that every day.  There’s a reason I don’t tell anyone at work I have a mental illness: I’m afraid that if I’m ever well enough to get a job, that will get in the way of my being hired.

But I live the other side of the coin every day too.  I have severe ulcerative colitis.  Do you think it’s socially accepted for me to talk about how I was up all night shitting blood?  I think it would probably be more acceptable to say I was hopelessly depressed. 

Because of severe fatigue and weakness, I often have to use a cane if I’m going to be on my feet for more than 30 seconds.  Do you think people don’t judge me for that?  Strangers ask, “What’s wrong with you?”  I get asked if I’m contagious.  I get told I don’t look sick.  I get told I’m too young to be that sick.  I get told I should just stay at home if everyday things are so hard for me.  A LOT of things aren’t accessible to me, from public transportation to jobs, because I can’t stand for very long, even with the cane.  And when you start talking about accessibility, people roll their eyes and act like I’m being an entitled brat.

Not everyone, of course.  Some people are lovely.  But overall, people don’t care.  They’re not willing to go a little out of their way to accommodate someone with a physical disability, either.  So please, for the love of god, stop saying that people with physical disabilities don’t also face stigma and discrimination.  Let’s stop playing the “Whose Life Sucks More?” game.  It’s not productive, and it just leaves everyone feeling worse afterward.

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stupid

“Who’s ‘you’ when
your own body is
your biggest enemy?

“If her own body
can’t recognize
her, how can she?”
Two Girls Staring at the Ceiling, Lucy Frank

I want out of my body.  I didn’t ask for this to happen.  They tell me I didn’t do anything wrong to cause it, but I’m the only one who has to suffer the consequences.  I did not sign up for this shit.

I’m not sure how much more I can take.

And not only am I sick ALL THE GODDAMN TIME, everyone either pities me or thinks I’m faking.

Or they just act like I don’t even exist.  Tonight, a dinner before the wedding.  I knew almost no one.  My mother introduced her husband to everyone, but not me.  I guess I’m not important enough to introduce.  No one talked to me.  I was sitting next to a family friend who had a stroke, whose entire vocabulary is “yes,” “no,” and “damn.”  I’m pretty sure he said more than me.  My mother kept checking to see if he was okay…but not me.

There was also NOTHING on the menu I could eat.  So I just got to sit there and watch everybody else eat.  That and cry in the bathroom.

It’s like I don’t exist.  They’d probably all be happier if I didn’t.  I’m the fucked-up sister, the sick sister, the crazy sister, the crippled sister, the sister covered in ugly fucking scars, the sister with no social skills, the useless failure sister.

I want to slice myself up so I don’t have to feel all of this.  If I had a blade I would.  I could take apart my razor, but then I’d be hairy for the next 2 weeks.

But I don’t matter to anyone, and I can’t deal with the feelings.

I do have a bunch of food, so I guess I could binge and purge.  Because that’s a GREAT idea when my digestive system is already fucked up.  But I have to do SOMETHING.

I’m trying to convince myself I don’t need to do anything stupid but it’s not working.  I know some of it is hormones but that doesn’t help either.  I just can’t deal with this.  I never should’ve come.  My sister probably didn’t even really want me here, and I couldn’t really afford this trip.  I’m so fucking stupid.  What made me think any of them could ever love me?

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So far past done with this

In the ongoing saga of My Case Manager Is Fucking Incompetent…

Today I was supposed to meet with her and my new case manager at 1:00.  At 12:15, while I was in the basement doing laundry, she called to see if we could move the meeting to 2:00.  I called back, but no one picks up.  No one ever picks up in that office, so I don’t know what the hell you’re supposed to do if you’re having a crisis or something.  So I left her a voicemail.

She didn’t show up at 2:00.  Or 2:15.  Or 2:30.  Or 3:00.  Finally I wrote it off and took a nap instead, because fuck that shit.

She doesn’t work on Fridays, so she won’t get my voicemail tomorrow and reschedule.  I’m not convinced the woman even knows how to check her voicemail, judging from past experience.  She’ll probably call me in another week and ask why I never called her back.  She won’t give me her cell phone number because OMG BOUNDARIES, and no one picks up at the office.  So how the fuck am I supposed to get in touch with her?

I’m so sick of this bullshit.  This is supposed to be helpful?  I was bullied/threatened into getting services from DMH–I didn’t want to deal with them after the way they’d treated me when I was trying to apply for services.  But it was get services from DMH or go to the hospital.  But this shit doesn’t even qualify as services.  I see ICM maybe twice a month.  She doesn’t check voicemails or return phone calls.  She goes on vacation without telling me.  When she does actually contact me, she constantly changes appointment times, and she almost always shows up late for appointments and then laughs it off.  She insists my diagnosis is something other than what it actually is, and she has virtually no education on my diagnosis.  I’m not convinced she has education on much of anything; she doesn’t even have an associate’s degree, and I know much more about the DSM than she does.  She has no understanding of what it’s like to live in poverty.  She has no idea what it’s like to live with a severe, disabling, chronic illness.  She isn’t interested in learning what my life is like. 

Pretty much all she does is show up sporadically to take me grocery shopping.  And while I go grocery shopping, she goes clothes shopping, and I have to sit outside with my melting groceries and wait for her to show back up.  I have no crisis support.  She’s not helping me manage any of my problems.  She’s not helping connect me with resources in the community.  She’s not doing fucking anything to help me.  She doesn’t even ask how I’m doing beyond the cursory, “Hey, how’s it going?” when I first see her.  She has no idea that my depression is getting worse because she doesn’t fucking ask, and I’m not gonna blurt it out in the middle of fucking Whole Foods.

I think what really bothers me is I feel like no one there gives a fuck about me.  If I killed myself, they wouldn’t even realize for a month.  (Don’t worry, I’m not going to kill myself.)  No one would, really.  I don’t have friends anymore.  My roommates might notice once I started to smell, but that’s it.  There’s no one left in real life who gives a fuck about me.  That’s a really painful thing to realize.

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