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.


One day at home too many

February 21, 2013

I used to stay home when I didn’t feel up to going out. These days I stay home when I have no place to go. Ok, and also when I don’t feel up to going out. But it’s the having no place to go that really bothers me right now, because I feel up to leaving, but I stay in anyway.

Tuesday was a busy day. I sat in a coffee shop, had some tea, and read a book. Then I took the longer route home, so I got in some extra walking. After lunch, I picked up groceries, then I saw my naturopath for a brief meeting. That would have been plenty for one day. But just as I was getting ready to head out for the groceries, I got a text message from the guy I’m sleeping with. He wanted to know if I was free that night and if I could stay over. Sleepovers are rare for logistical reasons, but the stars aligned and he thought it would be a nice surprise. So even though I knew it was too much, I went. I drove 45 minutes in the pouring rain and arrived exhausted (but quickly got a second wind when he kissed me.)

After sex it was still early, so we curled up in the living room and read for a bit. I headed to bed feeling nice and sleepy – between the busy day, the orgasms and the reading, it was definitely time for some sleep. But I’m not used to sharing a bed with anyone, much less with two people. Well, actually it was one person and one dog, but the dog is the size of a small person, and she hogs much more of the bed. And the bed is too soft (I had a wicked backache the next day.) And the pillows are too squishy (my neck is still a bit sore – next time I’ll bring my own pillow.) And the room was way too warm (I sleep with my windows open, even this time of year!) And D gets up to pee at least a half dozen times a night. And the dog repositioned herself during the night to take up even more of my space. So I didn’t get much sleep. When I did sleep, I slept deeply, but there wasn’t too much of it.

And then I woke up way too early. Normally at that hour I’d have gone back to sleep, but I had a partially naked guy next to me and a high libido, so I started something and he gladly gave up on sleep too. It’s a good thing I started it when I did – he barely made it to work on time. And when he left, I could have gone back to sleep, but what was the point? I just wasn’t sleeping well there. So I showered with him and got dressed, and despite his offers I decided not to eat breakfast there. I just hopped in the car and drove home. I made great time, but hit rush hour traffic two miles from home and that slowed me down. The drive took an hour. I dropped my stuff in the bedroom and then headed for the kitchen for breakfast. At an hour when I’d normally be in bed, I was showered, dressed, and eating. And exhausted.

So that’s how I ended up spending all day Wednesday at home. I figured I could push myself to go out, but what was the point? And I hadn’t made any particular plans anyway. I knew was going out Thursday (today) and I wanted to be rested. Between the lack of sleep and the more-than-normal activity and exercise of the previous day (and that morning) I figured a day at home would be good.

And it was. I read and watched tv, cleaned up around the house a bit, and generally relaxed. It felt great.

I slept very deeply last night and felt pretty decent today. I was ready to go out! Unfortunately, the person I was going out with didn’t feel as well and we agreed to put it off until tomorrow. Luckily, everyone involved is free then. But suddenly, I had no plans for today. My friends were all at work. My family was either at work or out of town or part of the plans that fell apart. There was no place I needed to be.

I spent another day at home reading and watching tv and reading more. In the evening I finally took a walk. I hadn’t left the house since I got home from that overnight, about 33 hours earlier, and the fresh air felt good. Still, it wasn’t enough. I didn’t see anyone. I didn’t do anything worthwhile outside of my own little world. I felt lonely.

This is one of the many things that’s hard to describe to people. No, I don’t feel up to working, because I have too many days like yesterday. And even on a day like today I probably couldn’t work for a full 8 hours. On the other hand, I need something to do, a reason to get out of the house, to see people, to socialize, to share. Just not every day, because that would be too much. They don’t get it, because they take these things for granted. But I know that at least some of you reading this know exactly what I’m talking about.

This is the part of the feel-good-happy-ending movie/tv show/book where I offer some profound solutions to this problem. But this is real life, and in real life I’m not sure what to do about this. I make plans to get out as much as I can, or to at least make sure I don’t have too many days in a row at home. If I have free days, I try to buy groceries or something. I knew I had no plans for Wednesday or Friday this week, but I had at least one thing for Monday, Tuesday, Thursday, and Saturday, so I figured that would be enough. And when Thursday fell through there was no way to quickly come up with a replacement. If you have any ideas, I’d love to hear them. In the meantime, I’m just glad that I have enough interests that I don’t spend all day watching tv. Still, I’d like to spend fewer hours inside these walls.


Ergonomics: Our bodies deserve nothing less

February 18, 2013

Pain is bad.

Everyone has experienced some level of pain. It could be a stubbed toe, a paper cut, or chronic pain that never goes away. It could be a broken leg, a bumped head, or childbirth. There are many causes of pain and many ways to experience it. We all tryErgonomic position to avoid it and lessen it. Why, then, don’t we help others avoid it too?

I got a call last night from a friend who has “tendinitis.” I put that in quotation marks because I was told that I had tendinitis for several years as a teenager, and of course what I had turned out to be something entirely different, so I’m skeptical of catch-all diagnoses now. Still, this is what he was told. He graduated from college last spring, and the pain started within a month of starting his first full-time office job. He had worked during the summers before, but never at jobs that required so much time at a computer. Now, he’s spending 10 hours a day at work (or sometimes more) and almost all of that time is spent looking at and typing on a computer. He called me because he knows about my history of pain in my wrists (among many other joints) and he figured I’d know all about ergonomic positioning. I told him all about that and more, of course (such as warning signs of other problems.)

What angers me is that no one had told him this before. I only know so much because I have made it a point to study it. I look things up online. I ask questions of my doctors, my physical therapists, etc. I have had two ergonomic assessments done. If you don’t know about ergonomic setups, here are some great tips that I found online. I read it through and it’s fairly accurate and and thorough. I would emphasize the need to take more breaks, though. But anyway, as I was saying, I found this information on my own. Why wasn’t it shoved in my face? Why didn’t someone offer it to me on a silver platter?

Some people are ignorant about these things. Others assume it’s obvious and everyone knows. Many people try to help but their knowledge is lacking or plain wrong, and they do more damage than good. Of course, there’s an easy way to fix this: every employer should be required to provide ergonomic assessments, and then make the necessary changes for their employees, such as providing footrests and height-adjustable chairs. I had one employer who was willing to pay to have a professional come to our office to assess the workers. This was fantastic! Of course, it only happened because I found the professional and then was insistent with the boss. But it happened. Another employer was quite large and had their own assessor on staff. It was her job to work with any employee who made the request. I found out about this after I asked for certain accommodations, such as a different kind of mouse. Even though I’d had an assessment done before, they wanted one by their person before they would provide anything. And if I hadn’t asked for accommodations? Well then I’d never have known that this service was available. My coworkers had no idea.

This should be standard in all offices. Every one is at risk for repetitive motion injuries, postural problems, etc., from using a computer for many hours a day. The human body was not made for this. Why not reduce the risk? So much money is spent on bottled water (most tap water is just fine,) plastic forks (is it so hard to wash real ones?), holiday office parties (that most people really hate,) and other wasteful things. Wouldn’t it be better to spend that money on the health of employees? In fact, I bet health insurance companies would back this idea. Think of the many tendinitis, carpal tunnel, and other cases they could avoid through these preventative measures.

Some pain can’t be avoided. Tomorrow I could slip and fall on the ice. Today I got scratched by a cat (I definitely get along better with dogs.) Why not avoid the pain that can be avoided? We should all insist on better accommodations at work and be sure to make the necessary changes at home. Our bodies deserve nothing less.


Should I go out tonight?

February 14, 2013

I think for healthy people, this question only comes up when they don’t have plans, or if they’ve been going out every night and feel that they need a night in. For me, this seems to come up constantly. I’m always weighing how I feel and how much I want to go to something against what I might miss out on in the future if I do go out. Today, the decision is whether or not to go to a Valentine’s Day singles party tonight. Yeah, I know, but it’s not as bad as it sounds. It’s a great group where I’ll know a bunch of people, and I’ve been to their Valentine’s singles party before and it was fun.

I haven’t been doing much lately. Tuesday I didn’t leave the house at all, and just had my sex-friend over for a couple hours. Yesterday I only went out briefly to a chronic illness group for an hour. And today I haven’t left the house at all. So it would be nice to go out.

Then again, I slept horribly last night. I woke up at 3am and only dozed on and off after that. And I have a day full of activity planned for tomorrow. Plus there’s the hassle of getting dressed up and having to put on a happy face. If I knew this event would happen again soon, I’d be happy to stay in and just do this next time, but unfortunately, the next one is a full year away.

Reasons I should go out:

  • I’ll see a lot of friends I really like.
  • I might meet someone interesting.
  • I can practice flirting.
  • Maybe someone will flirt with me.
  • It would get me out of the house and interacting with people.
  • I’m pretty certain I’ll have fun if I go.

Reasons I shouldn’t go out:

  • It will take away my remaining spoons, and possibly cause a deficit.
  • I might be too worn out to have fun tomorrow, which is a one-time family thing.
  • Because of the snow (and the resulting parking shortage) I can’t drive, so I’d have to risk taking the germ-infested subway.
  • I’ll have to either shake hands with a lot of people, or else come up with a reason not to shake hands that doesn’t drive away the flirtations.
  • I’ll have to answer the question “What do you do?” over and over and over and over. I hate that question.
  • I’m not ready to date yet.

I’m leaning towards staying home, but I just can’t decide. I keep thinking about all the friends who will be there tonight, so even if I don’t meet or flirt with anyway, I know I’d have friends with them. What holds me back is tomorrow. I must have energy for tomorrow. An elderly relative is in town and this could be the last time I see him, since I can’t travel and he might not be able to either after this. If I knew I could do both it would be different. But since I can’t be sure….

What would you do?


Using sex as a treatment method

February 12, 2013

Every week WegoHealth hosts a Twitter chat for health activists, and today’s chat was about sex and sexuality. Then a couple hours after that I actually had sex, a rare occurrence. So with sex on the mind, how could I write about anything else?

I don’t have sex as much as I’d like. I haven’t been dating much, and I only sleep with people with whom I feel a connection, so sexconvothat really limits me. Then a couple months ago, I got a text from D. D and I dated many years ago. Then after we dated, we slept together on an off for a couple of years. Then we lost touch for several years. We’d known from the start we’d never work out as a couple – he didn’t believe in monogamous relationships and I wasn’t interested in anything else. Still, he’s an excellent lover, and he thinks that same of me, so we kept having sex. I’d thought about him often in the years that we’d lost touch, so I was pleased when he texted me. We’ve been together several times since, and it’s been great. I have to be on guard that I don’t get emotionally involved, but aside from that, it’s all good. We get along great, we trust and respect each other, and we each think the other is fantastic in bed. Since I’m not dating anyway right now, this is just about perfect. (It would only be more perfect if we could sleep together more often.)

There’s another thing about D: he’s ok with the health stuff. When I first told him, he didn’t bat an eye. He’s always been Feelin' Satisfiedsupportive, without trying to “rescue” me. A lot of us know how rare that is. I once wrote that three different times I have crapped on a guy during sex. He was one of those guys, and he just shrugged it off and suggested we take a shower. Fantastic, right? Even tonight, in the middle of things, he kept starting to grab my arm, then stopping. Then I realized why – I told him he could grab it and it wouldn’t hurt me, and he immediately did. When we were together years ago, that would have hurt, and he remembered and was trying to be careful.

The point is, I can trust D around the health stuff. And that’s why I didn’t cancel on him tonight, even though the past 24 hours had been lousy. The fatigue hit hard last night, for the first time in a month or two. That was physically horrible and mentally discouraging. Then I woke up during the night to a lot of gas, cramping, constipation, and diarrhea. It was a terrible night. It took me several hours to get back to sleep. I woke up in the morning feeling lousy. I got out of bed late. I had no appetite most of the day. I spent most of the afternoon (I spent the morning in bed) watching tv, which I never do anymore. Usually when I have nothing to do I read, but I didn’t have the energy for that today. And to add insult to injury, the hormone mess meant that my sex drive was almost gone. I hadn’t been having sex fantasies, masturbating, or even feeling an urge for sex lately.

So why didn’t I cancel? Several weeks ago I was having a bad day when D was supposed to come over. I was in a lot of pain, and had been for days. I figured it was worth adding to the pain with sex. I’ve written before that sex can help with pain (this is true for me, but I’m not a doctor and am not giving you medical advice,) and that time a couple weeks ago it really did the trick. I felt much better afterwards, with the pain almost completely gone. I figured it was worth seeing if sex might help again today.

And help it did. It helped on many levels. Physically, I think it gave me needed exercise, and will contribute to better sleep tonight. He also gave me back my sex drive, which felt (and still feels) fantastic. Emotionally, it felt great to be close to someone and to cuddle for a while afterwards, having him hold me. Plus, I always feel wonderful about my body after sex. I feel sexy and desirable. Usually I dislike my body. I’ve always been comfortable with my appearance (except during Prednisone-fueled weight gain) but I don’t like the illness parts. This leads to a lot of negative thoughts about my body (such as I hate that I feel like crap! and Why does my body suck so much?). But it’s hard to have negative thoughts about my body after a half dozen orgasms, and after watching D’s reactions to my touch. Besides, how broken could my body be if I’m still capable of making someone scream like that?

Sex won’t solve all my health problems, even in the short term. And sex with the wrong partner won’t help at all. But when it helps, oh boy does it help! I’m not about to miss out on that.


%d bloggers like this: