A bottle of pills [extended healthcare rant, part 2]

[katster]

[Alright, this is a bit long, but do me the favor of reading it through, okay?]

There’s a bottle of pills sitting on my bookcase. Every night, I swallow one.

I asked once at the pharmacy how much it would cost me to fill the script. Their response was eighty dollars for a month’s supply. It could be worse. The last time I asked the same question, the particular script didn’t have a generic, and the answer was somewhere slightly north of two hundred dollars.

I suppose I’m a lucky duck in the sense that I’ve got some form of health insurance, as much as that health insurance is Medicaid (although that’s a frakking joke here in the State of California, let me tell you). And the reason I qualify for Medicaid? Well, because my income is low enough that I’m on disability. And why am I on disability? That’s what the bottle of pills is supposed to address.

You see, some of you know this, but a lot of you don’t. I’m bipolar. (Not to mention the other chronic medical conditions I have, but those complicate the situation, so let’s stay right here.) I’m lucky, if one can call it lucky to have a mental illness, that I’ve got the slightly less serious form, which doesn’t involve the complete detachment from the world that a full-blown manic state can cause.

Of course, the sudden chasms are all the much worse for it. I’m prone, especially when I’m not being good about taking my medications, of falling into a deep and horrible chasm from which there is no escape. The whole world goes dark and grey, like a fog so thick that I begin to think that I’m the only person in the world. I seriously contemplate ending it all, to stop being a worthless sack of meat that nobody particularly cares about. I can barely get out of bed, let alone do all the things the world requires of me. I start shying away from people, because if they knew, it might contaminate them and I couldn’t live with that. If I had to interact with the world, I’d put on a brave face, keep my head down, and try my best to act normal as much as every word is difficult and every step is agonizing and I’m doing my best not to break down and start crying or screaming. And all this is just the tip of the iceberg.

Did I mention I fell into this hole in the last semester of both my undergraduate and graduate programs, and it was only sheer luck that saved my hide in both cases?

It’s an awful place to be, and something I wouldn’t wish on my worst enemy. And it took us forever to find a pill that would keep me from falling into that dark place. The one I’m on now seems to be doing okay, although it doesn’t take away the intrusive thoughts that everybody’s looking at me and either rooting for me to fail or doesn’t care if I did. I deal with that the best that I can, and there are days that are better than the others.

Enough so that I’ve gotten a job. It’s only part-time. And in this country, being part-time (or being a contractor) means that the company doesn’t have to give you health benefits. Well, okay, that’s fine at the moment, my income is not high enough for me to move completely off SSI. So I still qualify for the little bit of help this country grudgingly gives to its poor.

And the amount of money I make is, quite frankly, unsustainable. The car payment doesn’t help, of course, but I needed a reliable car. And, you know, while my parents are great and awesome and wonderful people, I need to get out of here. It’s a bit embarrassing to admit that I’m nearly thirty-one and still living with my parents.

So I’m looking for a full-time job, which is difficult at the best of times, because I have to find a job that provides health care. Which means stringing together a couple part-time jobs or doing contract work is out of the question. Also, being at my job, if they raise the money I make an hour while keeping me part-time, at some point I’ll cross the income threshold for SSI.

And when that happens, that eighty dollar bottle of pills that’s my link to sanity, let alone the doctor to prescribe it, ends up being too much to afford. And then bang, I fall back into that hole that I’ve worked so goddamned hard to climb out of, get to the point where I can’t keep the job, and et voila, I end up back on SSI and I get to start over. That is, if I even qualify for it on the second fall.

So here I am, trapped. I’d like to do contract work. It’s more suited to my skill set and it means that I can keep my own hours, which is a good thing because I’m a night owl and run naturally on a noon to 3 AM clock. But I can’t do that, because I can’t afford to take a job that doesn’t come with benefits. Which leaves me caught nicely in a catch-22, where any attempt to make my situation better ends up, in all probability, making it worse. (Not to mention that this just feeds that little anxious voice in the back of my head: “See, they’re all rooting for you to fail!”)

Which makes me see red when I see the rhetoric that ‘all people on welfare are lazy.’ Are they lazy, or are they just trapped?

And this is just in relation to the bipolar. I’m not even bringing in the other medical conditions I’ve got, that’ll probably end up killing me. I know nobody makes it out alive, but, if you want the honest truth, most days I don’t think I’m going to make it to fifty.

…and this came out a hell of a lot rawer than I expected it to be, so be gentle.

Originally published at retstak.org. You can comment here or there.

Comments

[chuckconnor.livejournal.com]

Just about to go out for a meal (our unofficial anniversary is today, as opposed to our official partnership one) and wanted to say I'll comment more later.

However. You're not alone in the world - we're only an e-mail away - and we have friends with similar 'problems' so can partially appreciate what things can be like.

This is just to let you know that you're not alone in the world, no matter how dark it might seem.

And remember, one of the few creatures to live at both the North and South Poles are those totally out-to-lunch Bipolar Bears :)

[katster.livejournal.com]

Thanks.

I kinda figured that, amidst all the sturm und drang of the healthcare debate here, I might as well tell my story. I don't know how it'll get taken from some of the more *cough* reactionary among us.

It was surprisingly hard to write, though.

-kat

[rbos.livejournal.com]

"Which makes me see red when I see the rhetoric that ‘all people on welfare are lazy.’ Are they lazy, or are they just trapped?"

In that vein, there's an excellent Will Smith movie, The Pursuit of Happyness (sic). It's about precisely the kind of problems that can force a person into poverty through a string of unlucky coincidences, with a bad decision or two thrown in.

Sympathy on the health issues, and I hope it serves to change someone's mind on public health care. I won't bore you with my thoughts on the issue, mainly because the local medical death squads are roving the streets right now, and my computer is right by a window. I wouldn't want to take a round meant for a senior.

[rbos.livejournal.com]

HTML fail, pardon.

[katster.livejournal.com]

Yeah, you evil Canadian socialist grandma killers, you. ;) (And yeah, your system has problems, but I'd take it over ours...)

I'll have to go rent that movie.

-kat

[archangelbeth]

*hugs*
*is not rooting for you to fail*
*is crossing fingers instead, for luck*

[kevin-standlee.livejournal.com]

Heck, I don't want you to fail -- I want you to succeed. Who's going to run that Westercon in Sacramento I suggested to you?

[aris-tgd.livejournal.com]

*hugs*

Your story reminded me of a lot of others--but mainly of this one I read the other day on Andrew Sullivan's blog. I don't post this to compare or contrast or say "other people have it bad too"--well, okay, the last one, but only in the solidarity, when the hell are we going to fix this sense. We need serious reform and we need it years ago.

[underpope.livejournal.com]

The last job I had before my current one involved working with welfare recipients to teach them how to use their EBT cards. Granted I met a few of them who were lazy, or whose lifestyle consisted of simply moving around from state to state and signing up for public benefits while they were there and moving on when the benefits ran out; however, the majority of people were working hard to get off of welfare. I met single mothers who had no other options; I met people who were disabled, either physically or mentally, who were unable to work; and people whose luck had just turned sour.

Before I started working full-time, I never worked in a job that gave me health benefits. However, they did pay enough so that I did not qualify for MediCal. So instead of getting prescription medications for my asthma, I ended up getting Primatene mist, an OTC asthma drug which provided immediate relief but which caused more harm than good in the long run. At length I had a severe asthma attack which finally led me to find a pulmonologist who handed out free medications when he'd gotten free ones from drug reps, and who charged me the absolute minimum he could for each appointment. But even that was expensive for me, and the drugs he got from the reps were certainly not front-line asthma medications. When I finally got health care from the University, he prescribed front-line medications which I could finally afford (the difference between a then $5 co-pay and a $200 medication was substantial).

That's why the discussions about health care and welfare really piss me off. It's obvious to me that people who oppose health care reform simply have no clue as to what it's like to live without insurance. There are still too many people who have no insurance at all, and people whose insurance will drop them the instant they actually need it.

The health care system in our nation is a joke.

[robotmadder.livejournal.com]

I recently lost services at the mental health place I'd been going to for a few years, and I know how scary it is. That's after my last pdoc there talked to me about changing my diagnosis from bipolar I to schizoaffective disorder. Next month I have my first appointment with a regular doctor at county primary care. They wouldn't tell me how much it would cost when I made the appointment--I don't have Medi-Cal or any insurance at all. My meds cost more than $400 a month but my parents are helping, and I'm lucky I have a husband who makes a lot more money than I do. Anyway, all this is to say I have some idea what you're going through, and I send empathetic good wishes your way. Let me know if you'd like my latest mental health zine (functionally ill #5).

[(Anonymous)]

You wrote it up very well... And its very nearly the story of my spouse. Trapped is a very good word for it; I'm amazed she was able to manage on her disability until we met. Over the past several years I've learned more about how that was done and it was not at all easy for her. Disability doesnt pay enough to rent a shared room, buy food, and medication for a month. Much less anything else like doctor visits. I didnt know she was skipping meals to buy gas so she could visit me until long after she had moved in.

She was also worried about not making it to fifty. She'll be 57 this year.

Good luck; add another rooting for your success...

[melchar.livejournal.com]

I am rooting for you to continue winning. Even though it is [hell], you -are- helped by the pills and brave enough to keep fighting. [My female lineage are -all- chemically bipolar, so I -so- sympathize.]

However, please let me tell you that it is 0only0 this screwed up country that makes kids feel bad about living at home. The rest of the world allows a family to stay intact, help each other and live together. It's only THIS place that's so messed up. So - your parents benefit from having you there - and you benefit, being there. Please don't let yourself get bamboozled by messed up US pressures and leave a place which is likely better for you than being in some isolated apartment. OK?

[tsjafo.livejournal.com]

...‘all people on welfare are lazy.’

I've noticed that those who believe this are usually people who've never needed of help. They would be horrified if they had to go through what we have to go through just to get by. Just the paperwork alone...*sigh*

You are a survivor. *hugs*

[joii.livejournal.com]

*hugs*

[lirazel.livejournal.com]

This is very well said. And at least you know that those voices are in YOUR head, and not really in the minds and hearts of the people around you -- especially those who know you.

I'm taking five prescriptions and three OTC medications on doctor's orders these days. If it wasn't for Bravest's insurance, they'd cost me something like $500/month. One of them, an asthma inhaler, is $140/month all by itself. So, yes, this.

[hitchhiker.livejournal.com]

*hug*

the system is in serious need of reform; i just hope obama manages to push it through :(

[jaeai.livejournal.com]

*hugs* Hang in there...you are worth it, as our friend and family.

If you ever just need to go somewhere safe and (slightly) quiet - say the word. I have airline credits around here somewhur's.

We love you, Kat. Very much.