Monthly Archives: September 2014

Yeah, I’m an asshole

Somebody posted a comment on my blog the other days, asking me to donate to his Indiegogo campaign to help him manage his mental illness.  He needs, among other things, a car, and he wants me  to give him money, or at least repost his pleas for funding.

It makes me incredibly angry.  It’s been two days, but I can’t let it go.  Maybe getting it out of my system will help.

It would be different if this were coming from someone I knew–or someone I had ever interacted with at all.  But this is just some random person who’s never commented on my blog before; he doesn’t even appear to have a blog, just his personal Facebook page.  If it were someone I knew, I might be willing to repost, but this is some complete stranger who appears to have found me through Blog for Mental Health.  (Those of you who are also involved with that project, be on the lookout; I imagine he’s targeting more than just me.)

I think what bothers me the most is that if he’d read even a handful of my posts, he would’ve realized I’m in exactly the same goddamn situation.  In fact, mine may be worse–he gets more for disability than I do, and he appears to have subsidized housing, which I don’t.  I don’t have a car either.  I can’t rely on public transit either.  I can’t get to my doctors’ offices or the pharmacy or even the fucking grocery store.  He also has a therapist, which I don’t.

Normally, I have a lot of empathy for other people who are struggling with poverty and mental illness.  It’s a deadly combination, and god knows I understand how hard it is to survive every day when there’s no relief in sight and no one in power gives half a damn.  But I lose all compassion when someone comes into my space, making no effort whatsoever to get to know me or my situation, and wants me to help him fix his situation.

Once again, I’m made invisible.  My needs don’t matter because no one even bothers to see them.  I have fucking two dollars in my wallet and a negative balance in my bank account.  And it’s going to be the same next month.  The overdraft will empty out the few dollars I have left over after paying my $400 rent.  I need $150 for pellets for the pellet stove, and I need another $120 for the oil company.  My home internet got cut off because I couldn’t pay the bill, so I’ve been using the hotspot on my phone, but that’s probably going to cause a data overage charge even though I’m severely limiting my internet usage.  Oh, and at some point I should probably pay the overdue power bill, too, but I get $700 a month, so you do the math on that.

Every month, suicide looks like the only reasonable way to deal with all of this.

But please, keep asking you to give you money.  You definitely deserve it more than me.

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Public Transit Rant

This morning I had an appointment with my GP.  It was really necessary, since I’ve been sick for almost five weeks.  My landlady was able to give me a ride into downtown this morning, and from there I could take the bus to my doctor’s office, which is in the next town over.

It shouldn’t need to be this complicated.  See, my street is right on a bus line.  That bus goes straight into downtown, which is where I catch the bus to my doctor’s office.  Easy enough, right?

LOL NOPE

Because a few months ago, the regional transit authority decided to revise the routes.  For the route that goes by my house, they didn’t actually change any of the streets or anything–but apparently they instituted a new policy to eliminate all stops between downtown Northampton and Holyoke (two towns over, 9.5 miles away).  I live two miles from downtown Northampton, and even though the bus route goes right past my street, more than half the drivers will no longer stop there.  I don’t know what the deal with this new policy is.  I mean, you’re saving what, two minutes tops by refusing to stop?

So that leaves me with only the option of walking home from downtown.  Two miles doesn’t sound so bad, but it’s along a busy highway with no sidewalk or shoulder.  There have been several fatal car v. bicycle collisions there, and pedestrians are even less visible to drivers than bicyclists.  Add to that the fact that I am physically disabled.  My body literally cannot handle a two-mile walk most days.  I run a very real risk of having my muscles give out and collapsing on the side of the road.

I could probably qualify for paratransit, but that costs three times the normal bus fare.  They also require you to book the trip 48 hours in advance, which wouldn’t have worked since this was a last-minute appointment.

So today, I tried taking the bus home, hoping I’d get a sympathetic driver.  In that regard, the cane is sometimes useful.  I think they ought to stop for anyone who needs that stop, but I’m not going to complain if I get a cripple sympathy stop, either.  But the driver today was a huge jerk and refused to stop anywhere vaguely near my street.  So I had to go all the way to Holyoke.  Instead of staying on that bus for the return trip, I waited an hour, hoping I’d get a different driver.  No such luck.  Same guy, still wouldn’t stop.  So then I wound up back in downtown Northampton again.  In utter desperation–I was literally about to burst into tears in the middle of town–I texted my landlady.  Luckily, she was able to take off from work for a few minutes and run me home, for which I was immensely grateful.  It just shouldn’t be necessary.  When I moved to this apartment, I specifically sought out somewhere that was accessible by public transit–and it was, when I moved in.  But now I literally can’t go anywhere on my own, so I don’t leave the house.  I looked into moving somewhere closer to town so I’d have better access to public transit, but everything was miles out of my price range.  So I’m trapped here.

Meanwhile, all the politicians in Boston, when asked about improving public transit, talk about a multi-million dollar project to expand the Orange Line.  Western Mass never gets mentioned.  I want to shake them and say, “Look, asshole, let me tell you a thing.  I’ve used public transit in Boston, and it’s fucking great already.  Meanwhile, I can’t even get to a fucking doctor’s appointment out here.  I can’t go grocery shopping.  I can’t get to the pharmacy.  But yeah, let’s definitely sink all the transit funding into improving a system that already works instead of fixing a system that doesn’t.  ‘Cause nothing west of Boston actually exists.  We’re just motherfucking unicorns out here.”

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I don’t want any more doctors, but…

This morning I requested an appointment at the Crohn’s and Colitis Center at Mass General.

I love my gastroenterologist.  He has a great bedside manner, he talks to me like I’m an intelligent person, and he’s never given up on trying to get me into remission.  But I feel like I’ve hit a plateau with him.  I’m not acutely ill anymore, but I’m not in remission, either.  I’m still going to the bathroom 6-8 times on an average day, although usually without blood.  I still have pain every day, albeit not acute pain.  I still can’t go anywhere without constant and quick access to a bathroom.  I haven’t had an accident in a few months, but I’ve come very close, close enough that I would’ve had accidents if I hadn’t been at home.

My illness is controlled, but not well controlled.

The worst is the non-gut symptoms.  The fatigue and weakness have made most of life inaccessible to me.  The joint pain is often debilitating.  I have constant nausea.  I believe a lot of that, at least the fatigue and nausea, are a direct result of the 6-MP.  The fatigue really flared up when their doctor on call upped my dose from 75 mg to 100 mg, but it hasn’t gotten much better since I went back down to 75.  Iron supplements help some, but I haven’t been taking them consistently because they make the pain and diarrhea worse.  Nothing is really helping with the joint pain, and it really doesn’t help that I’m allergic to NSAID’s.

I’d like to be able to go off the 6-MP.  It might significantly reduce my non-gut symptoms, or at least give me a baseline to know how much is the UC and how much is the meds.  But my gastroenterologist is hesitant to even reduce my 6-MP dose.  I get it, I do–it’s the only medication that’s made my UC at all manageable.  I’d also like to get off the steroids, but I flare every time we try.  Hurray for steroid dependence.

I think my gastroenterologist is just out of ideas because the typical treatment just isn’t cutting it for me.  There aren’t a lot of treatment options for UC, so I think I need someone a little more creative to generate some new ideas.  I’m even willing to consider surgery if it’ll let me go off some or all of the meds that are making me so sick.

I just want to be able to have a better quality of life.  I’m so sick of being sick all the time.

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Back to the doctor(s)

So I have this sinus infection that won’t go away.  It started the week before the primary, with the campaign crud that everyone on the team was getting.  Because I’m on immunosuppressants, I get every little bug I come across, but most of them aren’t too bad and don’t last too long.  This time, it wouldn’t go away.  I was having twenty-minute sneezing fits (no, I’m not even exaggerating, and that’s really inconvenient in the middle of phone banks), my head hurt, my ear hurt, I was waking myself up at night because I was coughing and/or couldn’t breathe properly, and it felt like someone had poured concrete into my sinuses and let it harden.  All the Vitamin C, zinc, and Cold Care Tea in the world wasn’t enough to get it to go away.  It hung around for two weeks, getting worse and worse.

So on primary day, I went to urgent care.  I got a really nice PA who voted for my candidate and gave me a 5-day course of azithromycin.  I started to feel better, so I thought I was good.  But a few days after I finished the antibiotics, it was bad just as bad as ever.  I thought maybe it was just allergies, since the season is changing, but it’s worse than my allergies have ever been since I moved to Massachusetts.  Claritin, Benadryl, Zyrtec, and Allegra haven’t helped at all, so I’m assuming that a failure to respond to multiple antihistamines means this is actually an infection that won’t go away, especially since I started to feel better on the antibiotics.

Since I’ve now been sick for a solid month, I finally bit the bullet and scheduled an appointment with my primary care doc.  He’s a nice guy, but I’m just really sick of doctors.  I have more doctors than I have friends, at this point, and my PCP is probably just going to refer me to an ENT.  His tendency seems to be to refer me to specialists.  I don’t know if that’s what he does with everybody or if it’s just because he’s scared of my UC.  It’ll definitely come up at this appointment, since some antibiotics can trigger flares in IBD patients–all that messing around with the gut microbiota can really screw things up for us.  But maybe he’ll just give me something.  I mean, I doubt an ENT would be any more knowledgeable than he would be about what antibiotics are bad for IBD patients.  If all else fails, I can leave a message with my gastroenterologist, asking what antibiotics he thinks are safe.

I’m just so tired of all of this.  Two years ago, I was healthy and in great shape.  Now I’m sick all the time, and I can hardly even stand up.  It’s really wearing me down.

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Blood test for depression?

New Blood Test Diagnoses Depression
Full text of the study here

I saw this article on my Facebook feed a few days ago, and it’s been popping up in various social media fora since then.  Everybody seems excited about it, and I don’t get that reaction.  Personally, it worries me.

I’ve been wary of the biological explanation for mental illness for a long time.  No matter how many times people insist that it’s an illness just like diabetes, that doesn’t make it true.  There is some overlap, sure–it tends to be chronic, it’s invisible, and lifestyle changes can help many people manage the symptoms.  But depression, unlike diabetes, is not a purely physical disease.

This study, despite what a lot of people on Facebook think, does not prove the biological/neurochemical hypothesis of depression, nor does it provide a test to “prove” whether someone has depression or not in the way someone tests clearly positive or negative for, say, strep throat or diabetes.  In my understanding, this study says much more about the epigenetics of depression than it does about the neurochemical hypothesis.  (For purposes of disclosure, I only scanned the actual study, and I’m not a doctor or a scientist.)  Also, it’s a very small study, only 32 people.  That’s far too small to draw any major conclusions.

My worry is that people will take a study like this and use it the wrong way.  A lot of the sentiment I saw on Facebook was along the lines of, “At last, we can finally prove that most of these whiners are just faking depression for sympathy!”  Depression is a complex disease with many causes and extenuating factors, so I doubt that everyone’s experience of depression can be attributed to nine RNA markers.  What will happen to people who experience symptoms of depression but test negative?  Will they be accused of malingering or attention-seeking?  Will they be denied treatment because their depression isn’t real?  It’s already too hard to access treatment, and I can see this test being used to deny access to certain people.

My other worry is similar but more specific.  This study shows that certain people will benefit from therapy (specifically CBT, in this case) while other people won’t benefit.  Again, it all comes down to those nine RNA markers, which can’t account for someone’s motivation or willingness or desire to get better.  If someone’s labs show that they won’t benefit from therapy, will insurers be allowed to deny them access to it?  Will an RNA marker that says someone won’t benefit from CBT also be used to deny them, say, DBT or psychodynamic therapy?  After all, the insurers will say, why should they be forced to pay for treatment for people who won’t get better anyway?  We now have mental health parity laws (unless you’re on Medicare, in which case you’re only allowed to be crazy for six months in your entire life), but I can easily imagine a new system where mental health care must legally be covered just like physical health care, but only for people whose genes say they’ll benefit.  The rest will just be left to fend for themselves.

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Right now I resent all the people out there who have support–friends, family, partners, therapists, whatever.  I know it makes me a terrible person; resenting what someone else has isn’t going to bring it into my life.  But they have people who love and care about them, who talk to them and touch them, who would notice if they were sick or sad or gone.  And I don’t, and it’s not fair.

What’s so bad about me that I don’t deserve those people?  And yes, I know that’s a logical fallacy; I know it’s not actually about deserving or not deserving.  But that just means the universe is cold and empty and doesn’t care that I can’t get my needs met.  So either way it’s ugly: either I’m too bad to deserve care or the universe doesn’t care if I exist.

I want somebody to hug me and hold me and talk to me and take care of me.  The world is too big and scary for me to deal with, but nobody notices I don’t leave my apartment or my room or my bed.  No one cares that the world is too much for me.

Since there’s no one to love me, I might as well die.  And that makes me a bad person too.

But I haven’t succeeded in killing myself yet.  Probably because I don’t really want to die–I want someone to notice and care that I hurt so much I want to die.  Because I want someone to take care of me…but eventually, I probably will kill myself because no one is going to love me.

In the meantime I’ve been purging again because words aren’t enough for how fucked up I am.

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nihil

Last night I kept dreaming of being in institutions–boarding schools and psych units.  For once, the psych unit dreams weren’t bad.  It was being somewhere that people noticed I existed every day, not just once a week or when they needed something done.

In my real life, I go days without talking to anyone.  I rarely leave my bedroom, let alone my apartment.  If I disappeared, who would even notice?  It would take weeks for anyone to realize I wasn’t here anymore.  Probably not until rent or bills came due and didn’t get paid.  Then add a few days before they’d decide it wasn’t just that I was depressed and ignoring my phone.

It’s like I’m barely here.  Right now, I’m not even sure I really do exist.

So I sleep, and I dream, and in my dreams, I am real, I exist, there is a space for me where I am held.  And then I wake up and there is nothing, I am nothing.

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Dread

At the end of my suffering
there was a door.

–Louise Gluck, “The Wild Iris”

There’s this overwhelming sense of dread right now, like a pile of boulders on my chest.  My heart is thudding too fast and too hard, and I can’t breathe.  I feel like everything is about to come crashing down around me, like I’m about to lose everything.

There’s no logical reason to feel like this.  Not now.  I finally found a roommate, so I don’t have to worry about becoming homeless any time in the near future.  I have food.  I don’t have enough money to pay my bills, but that’s nothing new.  It’s not Hormonal Hell Week, so that’s not the problem.  My UC isn’t flaring.  I’m not experiencing any PTSD triggers.  Nothing out of the ordinary has happened.  Hell, I’ve even had a week off from the campaign because they’re getting the coordinated campaign together, so I’m not overworked or stressed by that.

So what the hell is wrong with me?  I’m living on the edge of panic, and there’s no reason, no trigger.  It feels unbearable, to the point that I keep thinking about suicide just to make it stop.  The suicidality at least made sense when I was facing homelessness again.  There was a reason.  But this…this just makes no sense.

I don’t cope well when feelings don’t make sense to me.  If I understand why I feel a certain thing, then I can cope with it.  I need things to make sense or nothing feels safe.  Probably that’s a PTSD thing: I couldn’t make sense of my parents’ abuse most of the time, so I never knew when to expect to be hurt.  Especially with my father.  With my mother, I learned to recognize the cycle: mounting tension, explosion, disappearance, apology, rinse and repeat.  But with my father, I never learned to predict it.  Maybe it’s because I dissociated so much of what he did that I could never connect a pattern, or maybe true psychopaths are impossible to predict because they don’t have the emotional tells that normal people have.  It probably doesn’t matter why because the result is the same: when I feel something and can’t understand why, it scares the hell out of me.

So I obsess over it.  I’ve spent most of the night trying to figure out why I feel such intense dread.  Then my inability to understand it just makes me feel it even more intensely.  It feels like there’s no relief and it will never go away.  I took a bunch of Benadryl to put myself to sleep, but it’s not working.  My body wants to sleep, but part of me is fighting it and winning.  I don’t understand that, either, except in the general sense of not feeling safe.

I could bear it if I just understood why.

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I have a roommate, finally.  That’s [mostly] settled, so that’s a relief.  I don’t have to freak out about how I’m going to pay the full rent next month, or about being homeless.

And I have plans for Thanksgiving week.  I’m taking a trip to New Jersey to stay with a good friend and her family.  That should be pretty awesome.

And both my candidates won their primaries, so now we’re working on a Democratic coordinated campaign.  I’ve never worked a coordinated campaign before, so it should be interesting.  I imagine our campaign will be at the forefront, since she’s the gubernatorial candidate, although our Democratic Senate candidate, who was uncontested in the primaries, has been running what he calls a coordinated campaign for months now.  I’m not entirely clear on how it’s a coordinated campaign before you had other candidates to coordinate with, but whatevs.  So maybe they’ll be in charge.  I’m a little unclear about how the power structure works now, but I guess I’ll find out.

I should feel happy about all these things, and somewhere I do.  But mostly I just feel exhausted and listless and uninterested.

I’m still sick–this damn cold will not go away.  The antibiotics improved things a little, but I’m still coughing and waking up because I can’t breathe at night, and this damn sinus headache won’t go away.  I should probably schedule an appointment with my primary care doc, but just the thought of getting there is exhausting.  Two buses, and no benches, and at least a half-mile walk.

I’m also just sick of doctors.  I feel like they’re not helping me.  Even my wonderful gastroenterologist doesn’t seem to think the fatigue is a serious problem.  I haven’t even scheduled another appointment with him, not since before I went on my trip.  UC-wise, things are stable.  Not great, but manageable, which is apparently as good as it gets for me.  Knowing how much his office staff messes up scheduling, I should probably at least make an appointment–it wouldn’t be for three months anyway.  But I just don’t want to, and I’m not sure why.

I didn’t go back to the OB-GYN, either.  I was supposed to call when my period started so I could get the Nexplanon implant, but it was during Get Out the Vote, and I was sick, and I didn’t have a way to get there.  At least that’s why I tell myself I didn’t call for an appointment, but I don’t think that’s really why.  I’m not really sure what it’s about, this avoidance of doctors thing.  I’m scared something else is wrong with me.  I’m scared of finding out for sure, but I’m also scared I won’t be taken seriously.  After all, I’m just crazy.  It’s probably just somatic, or I’m attention-seeking, or something.

Or maybe it’s passive self-destruction.  I’m not cutting or starving or purging anymore, so I do something much more subtle. I don’t know.  I just know that right now everything hurts, physically and emotionally, and I’m tired of taking care of myself.  I feel like I don’t have the energy to do it anymore.

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It’s not that we don’t try.

I read a blog post today written by a therapist.  I’ve been following this blog for a while, and mostly it’s decent.  But today, I just want to throw things.

This therapist is talking about how people with mental illness give up on treatment.  Apparently, according to this guy, 80% of people with depression get better after a year of therapy, but we just give up and won’t put in the effort.  He says, “Most mental health issues, for example, can be much better managed with a modicum of effort. Most people still do not put in the time.”

I don’t even know where to start with this.

First of all, where is this 80% statistic coming from?  He doesn’t cite any sources, and I don’t know if I believe it.  I know too many people who struggle with unremitting or recurring depression despite years of therapy, myself included.  I know my anecdotal experiences don’t disprove statistics, but I’m not just blindly going to accept numbers thrown around on the internet without any sources cited.

Second, how are we defining “getting better” in this statistic?  Are we using the HRSD?  BDI?  CES-D?  Goldberg?  Wakefield?  What score indicates “better”?  And over what interval of time?  For instance, counting someone as “better” 3 months after a depressive episode might be accurate then, but if they later relapse, are they still counted in the 80%?

Third, define “good counseling.”  Every single therapist I’ve ever seen claimed to be good, but some of them weren’t.  Some of them were probably good therapists for other people, but they weren’t good therapists for meSo when I terminated therapy with them, was I giving up and refusing to put in the effort?  Was I being one of those patients?  What about the therapists who have fired me?  Who said I was too difficult, too sick, too complex?  I guess I should’ve been a better patient so they wouldn’t have given up on me.

It’s bullshit, blaming people for not being able to do therapy.  There are a million reasons why someone couldn’t.  I, for instance, am mobility-impaired, don’t have a car, and can’t access public transit easily.  I cannot easily get to a therapist’s office.  I also can’t have a therapist whose office requires me to climb more than a few stairs, which is a major barrier in the area where I live.  This is not because I’m not willing to put in the effort.  I’ve pushed myself to the brink of physical collapse to try to get therapy, but my body just can’t handle it anymore.  It’s not okay to blame me for not getting better.

I have a Deaf friend who lives in a small town.  She can’t find a therapist who is fluent in ASL, so how is she supposed to access therapy?  That’s not for lack of trying either.

Or my friend who’s working two jobs.  She can’t just take off work from her low-wage jobs to go to therapy when the therapists are working.  She works from 6:00 in the morning until 10:00 or 11:00 at night.  She wants therapy, but there’s no one near her who can accommodate her schedule.  She doesn’t get sick time, and it she asks for time off regularly, she could easily be fired.  That’s not because she’s too lazy to put in the effort in therapy.

And what about the people who do get therapy, lots of therapy, for years, who work their asses off to heal…but don’t get better?  Yes, we’re statistically a minority, but we exist.  And to say that most people with mental illnesses won’t put in the “modicum of effort” to manage their symptoms is misleading and hurtful.  Most people don’t want to suffer.  We don’t want to be miserable and alone.  Most of us are doing the best we damn well can, and most of the time we’re doing it with far too few resources and far too little support.

It’s easy to sit in the therapist chair and judge us for what you perceive to be a lack of effort.  It’s easy to say, “Why won’t you just _____?”  And I think it’s especially easy to judge of you’ve recovered–you think if you can get better, why can’t/won’t everybody else?  But it’s not that simple.  Your illness is not everyone else’s illness; your pain is not everyone else’s pain; and your solutions are not everyone else’s solutions.  You may not see progress, but that doesn’t mean we’re not trying.

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