Having to choose: Paperwork vs. Health

July 29, 2012

I’m feeling overwhelmed and stressed out and I don’t even have a job.  Ok wait, let me rephrase that: I don’t have a paying job.  In reality, I feel like I have two full-time jobs right now: to improve my health and to manage health insurance crap.

I left my job in October thinking that I’d rest, feel better, and go right back to work.  Obviously that didn’t happen.  But during that time I was on short term disability (STD) so I had money (though only 70% of my salary) coming in and I could just focus on my health.  Unfortunately, I was halfway through the 6-month limit before I got onto what I believe is the right track for improving my health.  It took months of research, reading all sorts of books and web sites, and calling to interview doctors, naturopaths, and others.  Finally, a bit after STD ended, I had a course of action.

Unfortunately, the long term disability (LTD) portion was not so smooth, so I’ve dealing with that shit just as I’ve been starting new treatments with a new practitioner.  If you’ve been reading my blog, you already knew about all of this.  If you’ve had to go on LTD or SSDI, then you’re intimately familiar with this kind of situation.  This is nothing new to many of you.  But here’s the thing, the injustice of it all, the absurdity, just keeps coming back at me, and I can’t let it go.

How is it that when people are at their lowest, the system is designed to push them down even further?  Why is it that no one seems to care?  

Sure, the people most affected are usually unable to stand up for themselves.  I get that.  But what about friends and family?  Surely the politicians and business people responsible for this mess of bureaucracy must have friends and family who’ve been caught up in this system.  Don’t they see what a mess it is?  Haven’t they ever watched a loved one suffer?

It is just not ok that I am having to focus less on getting better so that I can instead try to complete forms, talk to lawyers, argue with health insurance, and all the rest of that idiocy.  Wouldn’t everyone involved benefit if instead I focused on improving my health so that I could one day go back to work and then I wouldn’t need Medicaid or SSDI or any of the rest of it?  Or if I never get better, will all the forms really have turned out to be so necessary?

I want to fix this system.  I can’t possibly do it now, and I know that’s just the way it is.  But some day, if I ever get well enough, something has to be done.  I’m very willing to take on the system.  Any suggestions on where I’d begin?


Salt in the wound: losing health insurance

July 12, 2012

Apparently the universe saw my post from yesterday and said “Screw you!  We’ll make sure you’re not ‘bored’!”

Today was bad.

This morning I decided to call HR at my old employer again.  I started calling about a month ago to find out what my health insurance status was now that my long term disability claim has been denied.  The person with all the answers was out of the office indefinitely. The other, let’s call her Joan, wasn’t calling me back.  I figured I should try again today.  I looked at the clock: 8:56am.  Too early.  I read the news.  I read email.  I read random web sites.  I ate breakfast and took my pills.  I did more reading.  Nice morning, right?  As I was about to start my physical therapy, I realized I could finally call HR.  I couldn’t get Joan on the phone but I got someone else, let’s call her Ruth.  Ruth checked with Joan and came back to the phone, asking me, “Have you received a COBRA packet in the mail?”  And from there my day went to shit.

For those not from the U.S., let me explain.  While every other industrialized country provides universal health insurance to their citizens, the U.S. does not.  There is currently a new law that will expand coverage, but it does not cover everyone, and we must still pay for health insurance ourselves.  No, I’m not kidding.  It just make sure we won’t be turned down by the insurance companies.  And then there’s an election coming up and one of the presidential nominees wants to repeal that law, which will only make things worse.  But I could write an entire book on my thoughts about that.  So moving on….  Most of us get health insurance through employers.  Getting it ourselves, without an employer, is very expensive.  When I left my job last fall I got to keep my health insurance.  However, when my long term disability claim was denied, I lost my health insurance.  By law, I am entitled to COBRA.  This allows me to keep my health insurance for up to 18 months (possibly 29 months if I can prove disability) and all I have to do is pay exorbitantly high rates.

Obviously this is bad.  I’m ill so I have to stop working, my long term disability claim is denied, so now I have no income and no health insurance.  This is very very bad.  I start wondering how much COBRA will cost me.  $500?  $600?  And when does it begin?  Does it begin today?  When my LTD was denied a month ago?  When STD ended back in April?  I could owe $2000 in back payments!  Very very bad.

Ruth in HR didn’t know anything, and I can’t blame her – it wasn’t her job.  She promised that Joan would call me back, and asked would I be able to talk this afternoon?  That’s when I lost it.  I do not like to cry in front of other people.  I just don’t.  And I lost it.  I started sobbing about how I was freaking out and I just needed to know.  I’d been trying to reach Joan for weeks and she could call me any time, she could call me at midnight, I just needed to talk to her!  And through the sobs, I could tell that Ruth felt awful about it.

Later I ran into a neighbor I’m friendly with while I was doing laundry in the communal laundry room (with the phone by my side) and when he asked how I was doing, I started crying again.  How embarrassing!  I had good reason, but it was still embarrassing.

I spent the next 5 hours bringing the phone with me everyplace.  I got all the way to the bathroom in my apartment, then trudged back to the living room to get my phone and bring it with me so it would be nearby while I peed.  I took it to the microwave to heat up food.  I had it next to me while I researched my Medicaid (state health insurance for the poor and disabled) options.  I had it on my lap while I briefly thought about going back to work.  (Then I pictured what I’d have to do, and realized I wouldn’t last through the first week.)  I had it with me on the bed while I lay there and cried.  I skipped my shower, just in case.  I wanted to get that call.  Of course, she didn’t call.

As the end of the workday approached, I tried calling Joan and she didn’t answer.  So I called Ruth instead and asked to speak to the head of the department.  Ah ha!  Joan came on the line, apologizing profusely.

At this point I should interrupt myself and say that I don’t blame Joan.  She was covering for the person who normally handles this and the department was understaffed even before that person had to take a leave.  I worked with Joan when I had to set up STD and she was very nice, though hard to reach then too.  This is not her fault.  In fact, she has been sympathetic and kind through the entire thing.

So Joan came on the line and started by simply confirming that my LTD was denied and that I was appealing it.  And here’s where the story finally took an upswing.  But to understand it fully, I should mention that I have a big mouth.  It runs in the family.  My mother’s side are all talkers.  We kid each other about it, and my father’s side jokes about it too, finding us all amusing.  I’m perfectly happy to spend an hour or more on the phone with a friend and not even notice the time flying by.  I can be overly chatty, and sometimes it gets me into trouble.  Often I don’t know when to shut up.  But this time, it saved me.

Joan asked if the LTD company had given me a timeframe for reviewing the appeal.  A normal person would have said, “I haven’t filed the appeal yet, so no.”  Not me.  Oh boy.  No, me and my big mouth started in on, “Well, no, but even if they had I wouldn’t believe it, after they delayed my claim by several weeks and lost part of my file.”  She was horrified and angry and wanted the story, so I told her the whole thing.  And that’s when she told me something crucial that I wish I’d known earlier (but I guess it did make perfect sense once I thought about it): the insurance company has to answer to them!  My employer pays this company and expects their employees to be treated fairly.  And lucky for me, Joan is the person they report to.

To compensate me for my horrible treatment, she would immediately extend my health insurance for two more months as of today.

TWO MONTHS!  I could have fallen over!  I was shocked, relieved, happy, amazed.  This doesn’t fix everything, but it gives me some time, some breathing room.  Medicaid applications are processed in about a month, so I can apply several weeks from now and with any luck, if they approve it, I’ll have Medicaid when my employer-provided health insurance is cancelled.  Whew!

Oh, and as a bonus, she’s going to call the supervisor of my contact at the LTD company and discuss this whole thing.  I planned to address it later, after my claim was settled, but she’s doing it now.  Great!

I did a lot of crying today, which is unusual for me.  At times I felt alone and helpless.  I was angry, confused, and angry again.  Then somehow, unexpectedly, I got a small boost.  It won’t last long, but I’m grateful for it.  I’ll still lose my health insurance, but at least this time I’ll see it coming.

Now I just have to hope my lawyer can file that appeal quickly!


But I want to work!

June 20, 2012

I was at a support group for people with chronic pain.  This group meets in the mid-morning on a weekday so, unsurprisingly, none of us are currently working.  As we went around the room talking about recent frustrations, I kept hearing a theme: I want to work.  One woman talked about the stress of having to declare bankruptcy.  Another spoke about getting turned down for Social Security.  I was having problems with a private long term disability insurance company.  Many spoke about money troubles.  A couple mentioned not being able to take care of their kids.  Several didn’t like having to rely on their spouse for financial support, as well as help around the house.

What do these all have in common?  We want to be well!

As I listened to everyone speak, I was thinking how much I’d love to have a transcript of that meeting to show all of the doubters.  There are too many random people in society who think that we’re just trying to get “easy” money.  There are the politicians and bureaucrats who seem to think we’re all trying to scam the system.  There are the insurers who insist that we’re not really too sick to work.  And yet over and over I heard people saying that they wish they could go back to work.  Some said it indirectly and others used those words, but we were all saying the same thing.

I hated my last job.  I won’t pretend otherwise.  But I still want to go back to work.  I want an income, I want independence, and I want control over my own life.  Right now, I would love nothing more than having the choice of returning to work.  Sadly, that is out of my control, just as it’s out of the control of the others in the support group.  If only the doubters understood just how much we want it.


Disability insurance: Where’s the fairness?

March 20, 2012

In about two weeks my short term disability (STD) insurance will end.  My health will probably be no different than it is today, but my insurance will disappear.  Luckily, I paid into my company’s long term disability (LTD) insurance.  Last week I got all sorts of information about this benefit.  I learned how much it will pay, how the money will be taxed, and how my other benefits, such as health insurance and the FSA, will be affected.  Of course, this is assuming that I get LTD.

My rheumatologist has been on vacation for over a week.  When she gets back later this week, she will find some forms that are waiting for her at the office (assuming the postal service delivered them on time.)  I hope that she fills out these forms and sends them in quickly.  I must fill out my own set of forms, with crazy questions like asking me to list all of the illnesses I’ve had in the last 5 years, and send them in.  And then I wait.  I wait and I hope that my application is approved the first time around.  As I wrote a couple of weeks ago, after years of people not believing that I had a real health problem, I still get nervous about this kind of paperwork.

Still, I will probably be approved.  I now have years of medical records that document my condition, and doctors who will explain why I can’t work.  I feel so fortunate.  The payout is decent – enough to pay all of my bills if I’m frugal.  I get to keep my (very decent) health insurance.  I lose some benefits, such as the FSA, but so be it.  I can even work to a certain extent while I am on LTD (when I eventually feel up to it.)  This is all much better than what I had expected.  But there’s one thing that really bothers me: fairness.

Ok, the world isn’t fair.  We all know this.  Still, it doesn’t seem right that I get this benefit because I worked at a company that provides LTD, while so many others do not.  If I had gotten sick 10 years ago, I’d simply be unemployed now.  And if my current inability to work doesn’t improve within the 2 years that I have LTD?  Then what?  Social security is a joke – it wouldn’t even cover my rent right now.  Even if I moved out of state to an area with a lower cost of living, it wouldn’t be enough.  I would be on Medicaid and food stamps and would still have trouble paying the bills.  Is this the way we want our system to work?

I feel so grateful for the amazing benefits I have, and so horrified that they are not standard.  I can not understand why more people don’t stand up and insist on receiving these kinds of benefits.  I suppose everyone thinks it won’t happen to them.  That’s what I used to think.  But most of us know someone who has had to deal with illness, so isn’t it just possible that it could affect us too?  We need outrage right now.  I’m too tired to fight for this kind of universal benefit right now, but when I get my energy back, when I’m feeling better, it will be right near the top of my list.  When I go back to work, I want to fight for equality and fairness.  It’s an uphill battle, but one that I look forward to fighting.

 

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If you can relate to this, please pass it along!  Thanks!