More disability insurance bullshit

February 28, 2013

The other day I wrote about the inanity of the disability insurance system. Today I finally got in touch with my doctor and she read off the questions they sent her.

First, I love my doctor. When they called her, she refused to answer their questions on the phone and insisted that the questions be sent in written form. Lovely. And she’s going to send me a copy in advance so my lawyer and review it before she sends it in. Let’s just hope it helps me.

So anyway, she read the questions. And I didn’t like them. There were some along the lines of, if Prednisone and Plaquenil were helping me, why did I go off of them. Um, HELLO?!?!?!? These are not drugs to stay on long-term if you can help it! Why on earth would they suggest otherwise? And of course they asked why I didn’t try other disease-modifying drugs. I wonder if they mean the drug that’s in a class I’m allergic to, the one that causes permanent infertility, or the chemo drug? Because those are the only options I haven’t tried. Anyway, these questions are all focusing on treating the pain, and if you’ve been reading this blog for any length of time, you know that pain is not what’s keeping me from working these days. It’s the fatigue that’s stopping me from working, dating, spending more time with friends and family, getting out of the house many days… you know, having a LIFE!

Of course, the problem is that these insurance folks don’t see a person in those medical records. They see symptoms that could cause them to have to pay out lots of money, and they don’t want that. So they’re looking for a way to not pay the money. Even though if I had the money, I’d probably get better faster because I’d have more stable health insurance and more money to pay for treatments that aren’t covered by insurance, not to mention less stress and more stability in my life. But no, they’d rather try to avoid paying at all, which just delays my treatments, which means that if I do eventually win, I’ll be on the insurance for even longer. I’d rather get the money now so I can get better and then go back to work. And then they wouldn’t have to pay me at all.

Maybe I should buy a lottery ticket instead. Because, yeah, that always works.

I have to find a way to get healthy. I have to get healthy, start socializing again, go back to work, and then figure out how to fix this ridiculous, unfair, broken system that is completely stacked against the patient. I need to figure out how to lobby legislators or whatever to provide some fairness to this joke of a system.

It’s just not ok.

I used to end every post by asking readers to share it. I stopped doing that because I don’t think it helped and I’m less concerned by the quantity of readers than by the quality of readers (as in, getting people who are in some way helped or entertained by my writing.) But this time, I’m asking you to please share this and any of the other insurance-related posts. It’s so important to start opening people’s eyes to this. Everyone is so focused on health insurance. Yes, that’s important, but disability insurance is important too. And what’s the point of having it if they won’t provide the service that you’re paying for? People need to start realizing this, so that we’ll have more support as we work to improve the system. So please consider sharing this on Facebook, Twitter, Reddit, or whereever else you are. Or even by old-fashioned email (does that make me sound old?) For all but the last, just use the little buttons below this post. It’s a small way to help me work towards one day changing the system.

I can hardly wait to get started.


Being ill doesn’t have to mean watching tv all day… but it can

February 26, 2013

There is a stereotype of people with chronic illnesses sitting on the couch or lying in bed and watching tv all day long. That’s it. They don’t do anything else.

Is this true for everyone? NO! DEFINITELY NOT!

Is this true for some people? YES! OF COURSE!

The point? Don’t generalize. Just because something is true for some people doesn’t mean it’s true for everyone. Do some gay men have great fashion sense? Yes. Do they all? No. Do some women love clothes shopping? Yes. Do they all? No. (I’m one that doesn’t!) Do some sick people lay around all day watching tv? Yes. Do they all? No. If they do, do they have a good reason? Some yes, some no.

I’ve encountered this stereotype a lot. Of course, it doesn’t just apply to ill people who don’t work. I’ve seen it applied to all people who don’t work. When I quit my job several years ago, people kept asking me what I did all day. Apparently they lacked the imagination or interests to figure out what anyone could possibly do besides work at a job for those extra 40+ hours a week. The truth was, I was incredibly busy. People were shocked to hear that I was watching less tv than ever before, and I’d had to stop watching some shows altogether because I just didn’t have time. What did I do? I hung out with other unemployed friends (this was at the height of the recession, so there were several to hang out with.) I read a lot. I exercised regularly. I learned to cook. I started some interesting new projects. I volunteered twice a week at a nonprofit. I socialized a lot more – I rested during the day so I could go out at night, even several nights in a row. I did laundry, cooking, grocery shopping, and other chores on weekdays so I could go out with friends on weekends. I slept healthy amounts every night. I did my physical therapy nearly every day. When I found time, I squeezed in looking for a new job. It was a fun, busy time, and I loved it all. Who had time to watch tv? Not me.

Of course, being out of work this time around is completely different. I don’t have the energy for most of those things. I have entire days where I don’t leave the house. So I have to find other ways to fill my days.

For starters, each thing I do takes longer than it used to. Taking a shower and getting dressed takes a while. Cooking takes a while. Doing dishes takes a while. I also have to cook a lot more than I used to, since I’m not eating any processed foods. In between those at-home activities, I do leave the house. My friends are all working now, but during the day I can visit with relatives who aren’t working. Or I buy groceries. I do laundry. And I read. I read a lot. I read a lot every day and that’s what I spend most of my time doing. And yes, I do watch a lot of tv. I’ve noticed that the amount of tv I watch is directly proportional to my cognitive problems. When I have good focus and my mind is working properly, I don’t watch much tv at all. When things are fuzzy, I watch more.

This is why on a typical day at home, I watch an hour or so of tv while I eat lunch, then shut it off. It comes back on while I eat dinner. If I feel clear-headed, I usually have no patience for tv and I’d rather be doing something mentally active, so I shut it off after I eat. If I’m tired or not thinking clearly, I watch until bedtime, which could be several hours. This is also why I watch almost non-stop during my waking hours when I have a fever; I just don’t have the focus to do anything else. When I get sick of watching tv then I know the fever is breaking and I’m getting better.

On Saturday I had a lovely day. I rested all morning and early afternoon. In the late afternoon I played with my friend’s kids, chatted with my friend, helped get the kids to bed, then played board games. And since then I’ve been paying the price. It started with some fatigue on Sunday afternoon. By yesterday, I felt really crappy. I’ve had a sore throat since then, so I think my thyroid is enlarged. And I feel fuzzy-headed. I spent a lot of yesterday watching tv. I tried to read in the afternoon, but I read the same paragraph 5 times before giving up. Then I took a nap. And then I watched more tv. It was a miserable day. I composed a version of this post in my head, but didn’t have the energy or desire to type it out. I felt lousy and just wanted to ignore everything. Checking Facebook or reading a blog seemed to take too much effort. Tv is easy. It’s passive. And it was perfect.

Today is a mix. I watched for a couple hours around lunchtime before shutting it off. But when I tried to read, I only got through a few paragraphs and I just didn’t feel like I was following along. I managed to participate in the HAchat today, and now I’m typing this, so maybe I’m getting better. I hope so. But then, I’ve had to retype words over and over to get them right. It’s hard to compose sentences. So who knows. I haven’t left the house in over 48 hours and it’s a bit much. I could use to buy groceries. (A downside to living alone is having no one to get food when you feel like crap.) But I probably shouldn’t drive at this point, and I’m definitely not up to walking. Maybe tomorrow.

So to all those who assume that because I’m ill and not working that I spend all day watching tv because I’m lazy, I want to say that I find small ways to contribute to society. I’m a good friend, daughter, granddaughter, and auntie. And if I do spend all day watching tv, that’s none of your damn business!


And the insurance system screws me even more

February 23, 2013

The kid tells his teacher that his book report will be late.

  • Kid: But it’s not my fault! I didn’t have enough time!
  • Teacher: You knew about this 2 months ago.
  • Kid: But the library was closed!
  • Teacher: When did you go to the library?
  • Kid: Yesterday.

You have no sympathy for the kid, right? He should have gotten the book much, much sooner. Procrastination isn’t an excuse.

Of course, what my insurance company did is even worse. You can read the basics here. After sending in the appeal, the insurance company by law has 45 days to respond. At that point, they can request an addition 45 days, which of course they did. So I counted down those 90 days, anticipating and dreading the result, but thankful that at least I’d know, one way or the other. I was glad that I could move out of limbo. I waited impatiently for my lawyer’s call. Almost a week after the deadline, I emailed my lawyer, and she responded that she hadn’t heard anything yet. So I waited more. Finally, more than a week after the deadline, I got the word: they need more time.

And this is where it gets all book report-y. They say they need more time because they need to talk to my rheumatologist. They contacted her and didn’t hear back. I asked when they contacted her. The answer: the day before the deadline. They reached out to her on day 89 of the 90 day response period. So WHY THE FUCK DID THEY WAIT SO LONG?!? Probably, because they can.

There’s nothing I can do, of course. My only recourse is to sue the insurance company, and my lawyer insists that won’t help. The company will argue before a judge that they didn’t get to speak with all of my doctors and the judge will rule that they should get that chance and in the meantime I’ll be paying the legal fees.

So I’m waiting again. I’m waiting and waiting and waiting. I did call my doctor to find out when she’ll respond to the insurance company and I am waiting to hear back from her. And that’s all I can do.

I’m furious. How can this happen? Don’t they realize there’s an actual person whose life is being affected? Who needs to make plans for the future, like whether or not she’ll be able to pay the rent next month? Who needs to know how much she can afford to spend on medical treatments? Where’s the respect for a fellow human being? Why doesn’t the patient have any rights?

I’ve said it before and I’ll say it again: when I get healthy I’m going to try, somehow, to fix this system. Because this is simply not ok.


Another ridiculous media portrayal of disability making our lives worthwhile

December 17, 2012

I started this blog because I was sick and tired of hearing stories about how it’s so worth it to have X health problem because of all we learn from it and blah blah blah.  Yes, I have received a lot of insight and wisdom from my health problems.  And if I didn’t have my health problems I’m sure I’d have gotten that insight and wisdom from someplace else.  After all, healthy people find it.  And I’d gladly give up those “benefits” this instant if it meant I’d get my health back.  It just pisses me off when people suggest that it’s worth being sick because of all we learn from it.  If they want to say that’s true for them, I’m fine with that, but so often it’s suggested that this is true for everyone, and that’s just not the case.

In general I like the tv show Glee.  I started watching it because all of my queer friends were watching it, and they made it sounds much better than I would have expected a show about high school kids to be.  Mostly, they and I loved that it was so inclusive of our LGBT community.  This show covers difficult topics like bullying, domestic abuse, and eating disorders.  It also has characters from minorities that aren’t often seen on tv, and never so many in one show: gays, lesbians, bisexuals, a possibly (I think likely) transgender character, one with down syndrome, a student of mixed race, blacks, Asian-Americans, a Jew, an evangelical Christian, someone with OCD…. it’s really quite amazing.  And from the start, there as been Artie, who is in a wheelchair due to an injury sustained in a car accident that occurred some time in the past.

Tiny spoiler alert: What I say now gives away a tiny part of this past week’s show, aired December 13.  It does not in any way spoil the ongoing plots of the show.

In the first moments of last week’s episode, we see Artie looking and acting upset, with a bruise on his face, and we immediately learn that the janitor didn’t salt the ramp into the school and so he slid down it and fell out of his chair.  He was humiliated to have to wait for someone to come by and help him.  He says that he wishes he’d never been in that accident and ended up in his wheelchair.  This is where the It’s a Wonderful Life ripoff comes in.  Yes, that’s right – a student/spirit comes by to show Artie what life would be like if he’d never been in that accident.  Of course, everyone else is much worse off.  His friends are no longer his friends, some are being bullied, others haven’t graduated like they should have, a teacher has stayed in a bad marriage.  What’s more, it turns out that Artie is a jerk.  He’s one of the bullies.  People are miserable.  All because he was never paralyzed.

In the end, Artie must choose whether to stay in this new messed-up reality or to go back to being in the wheelchair.  Of course he chooses the chair.

Now obviously the ways in which everyone else’s lives are messed up is a bit far-fetched, but they need it to make the plot work, so let’s just go with that for now.  As always, though, there’s no mention of the people whose lives would be improved by that accident having never happened.  I bet his parents would be happier for not having gone through all of that stress.  And what about the other driver?  And maybe one day he helped a neighbor carry something heavy upstairs.  I bet there are all sorts of ways he could have helped people, or otherwise affected their lives in a positive way.

As for the idea that Artie was only a nice guy because of the accident, I have to object.  I’m not sure how old his character was when it happened, but I really have my doubts.  Still, it’s high school, so it’s very possible he fell in with the “wrong crowd” when he could walk, and that didn’t happen when he was in the wheelchair.  But there’s this suggestion that I see and hear so often that the illness/disability makes us better people.

I don’t know about you, but I’ve met some disabled people who are real assholes.  And I’ve met non-disabled, non-ill people who are really nice.  Funny how that works.  It turns out, you can be a great person AND be healthy!  You can be a jerk AND be disabled or ill.  Go figure!  (You get that that’s sarcasm, right?)

Finally, there’s this idea that Artie became such an amazing, selfless person simply by being in a wheelchair (I was going to write “by being paralyzed” but that’s really not the focus in the show, the focus is the chair) that he’s even willing to go back to being unable to walk for the rest of his life just to make everyone else’s lives better.  Sure, this makes his life better too because he gets his friends back, but my impression was that he did it mostly to help everyone else.  Because, you know, we ill and disabled people are always so selfless like that.

Actually, I’m a pretty selfless person.  I go out of my way to help others.  I was like that long before my health problems started.  And if I was told I’d get my health back but I had to personally hurt people, I wouldn’t do it.  But if I was given the chance to be healthy, and I knew it might hurt some people but help others, and I wasn’t directly responsible for changing reality, I’m guessing I’d go for Door #2: GOOD HEALTH.

Like I said, I enjoy this show and I really appreciate the way that they handle complicated and controversial topics that other shows avoid.  Overall, I think they do a good job.  I guess that’s why I was extra disappointed to see this initial part of the show, which once again reinforced the ridiculous, deluded idea that ill/disabled people are inherently “good” because they are ill/disabled and that they don’t mind being ill/disabled all that much because they know that it makes everyone’s lives better.  How are we ever going to get the respect we deserve as long as this message is being communicated to the masses?