It feels great to do ANYTHING proactive!

April 5, 2013

I’ve been a proactive person for as long as I can remember. Sure, I procrastinate a bit. Ok, I procrastinate a lot. But when it counts, when it’s important, when I care, I really get things done.

In my personal life, I get things done. When the cable company wasn’t fixing my service, I called them and hounded them until it was fixed (and I received multiple apologies from them!) When I needed medical paperwork at school or at work, I always took care of it; even in middle school, I was careful to get notes from my doctors so I would be excused from gym class and in high school I took care of special arrangements for a non-standard SAT test and got note-takers in my classes. You name it, I did it. Even as a child, my parents knew I’d take care of everything and never interfered at school or at my jobs. They were there for advice and support, but I was the one who did everything.

In my professional life, I was even more efficient. Just watch a vendor try and stiff me on a service or not meet a deadline! One particular staff member had trouble meeting deadlines, so I broke down projects for her and sent reminders for each piece well in advance on their due dates. When something broke, I got it fixed. I got out ahead of problems and stopped them in their tracks.

I like being in control. I like taking steps to get things done. And that’s why it’s so hard to not have any control in my current situation. Of course there isn’t a ton I can do to control my health. I do what I can, but it’s limited. I want to see certain doctors and try certain treatments, so I get frustrated at financial limitations. But I’m trying. With the disability insurance, though, I’ve been completely stuck. If it was up to me, I’d call the insurance company every single day and bug the hell out of them until they approved my claim just so they could get rid of me. Unfortunately, I have to rely on my lawyer to work with them. I sit and wait and then wait some more. I get notices of delayed decisions and can’t call them up to find out why on earth there’s a delay. It’s infuriating.

So it’s no surprise that I found myself in a fantastic mood a couple hours ago. I spoke to my lawyer yesterday about the latest delay, which I found out about earlier this week, even though it took place more than two weeks ago. We discussed my lack of options. There’s no regulatory agency. Calling the attorney general won’t help. Calling my senator won’t help. Calling the company isn’t an option for me, and she already left a message (which hasn’t been returned!) Suing is my only option, and it’s likely to fail. They know there’s nothing I can do, so I asked my lawyer why on earth would they bother to do it at all? Why not just delay another 6 months? After all, even if they approve me, they do not owe me any interest or reimbursement for costs I’ve incurred. So why wouldn’t they continue to delay it? My lawyer had a good answer: to keep their clients happy. They don’t want to piss off my employer (well, former employer) by denying every claim that’s submitted. That gave me an idea: what if I called my employer’s benefits person and told her what was going on? My lawyer didn’t object.

And that’s how I found myself finally doing something useful today. After 2 days of phone tag, the benefits person and I finally spoke. The call was short, under 10 minutes, but it was enough. I told her my story and she was concerned. She took notes. She asked the right questions. She expressed sympathy for my situation. And then she said she’d email the insurance company to find out if the latest internal deadline of theirs was met. She warned me that they wouldn’t give her an answer because they would only give that to my lawyer. However, she felt that by asking the question, they would realize they were pissing off their client and would move their asses on my case. Ok, she put it in more professional language, but that was the idea of it. She promised to get back to me next week when she heard from them.

This may have been the push that changes everything. Or it may accomplish nothing at all. But at least I did SOMETHING to help myself. After so many months of just waiting, it feels great to do something to potentially move things along. I just hope it works!

4 Comments | Expectations, Frustration, Limitations, Milestones, Politics, Rants | Permalink
Posted by chronicrants

How dare you judge how I treat my pain!

March 26, 2013

This has been a very bad pain week. I have a guess about why things are so bad, but it doesn’t help me to fix the problem. On our lovely pain scale (we all know that scale, don’t we?) I had a lot of time at 2s and 3s for a while. Lately it’s been at 5s and 6s. I can handle that. I don’t like it, but I can handle it. But when it was getting into the 7s and 8s and 9s and disturbing my sleep for several nights in a row, something had to change.

Two nights ago I slept for only 4 hours, and it wasn’t great sleep. The pain woke me up often before getting so bad that even dozing was impossible. Long before dawn, I lay in bed and knew I wouldn’t be sleeping again that night (morning?) I thought about getting painkillers. I take them very rarely because I don’t like the side effects. I take them so rarely that my last set expired ages ago and I’d thrown it out. When their office opened, I could easily call my doctor and have a prescription sent to my pharmacy, but did I really want those side effects? And let’s face it, it only helps occasionally and minimally. I really hated that idea.

Some of you may know that medical marijuana was approved in my state in last November’s election. I’ve written my views on it before, and they haven’t changed. So you may think this is a good option. Unfortunately, the regulations have not yet been written by the state group in charge, and probably won’t be for several more months. Without regulations, doctors won’t prescribe it and there are no dispensaries to sell it. Still, what other options did I have?

Around 5:30am I was exhausted, in pain, and really pissed off at my body. First I emailed one of my medical practitioners and asked if the prescription painkillers would interfere with any of my current meds or supplements, just in case. Then I emailed a friend and told him about the horrible pain. I asked him to put me in touch with a friend of his who sells pot. I was going to write to a few more friends who might be able to help, but I was just too tired and in too much pain to type. I figured I’d write to them later.

The doc wrote back that I’d have to discontinue a couple of things but that it wouldn’t be a big deal to take those painkillers. But I still didn’t want to take them. I dreaded it. Then the friend texted me. We spoke on the phone and he said he had what I needed and would give it to me for free because it was a tiny amount. He wasn’t kidding – the scale had trouble registering it. Even with the plastic bag it was barely a gram. But it was enough to see if it would work.

I knew I wouldn’t go to jail for this. Even if I wasn’t protected by the medical marijuana laws, marijuana was decriminalized in this state a while ago. At worst there would be a fine. But there’s still the stigma. I told a couple of friends, though. People joked about it, not understanding that my goal wasn’t to get high, just to get away from the pain, and that it sure as hell wasn’t a funny situation to me.

The thing is, I can’t smoke. My lungs just won’t go for it. So I have to eat it. I looked up online how to cook it, then went through the process. The last time I ate it, I got really paranoid (but it got rid of the pain!) Of course, it turns out that what I ate was incredibly strong and I didn’t know. This time I was dosing it myself. I did about half of what I figured I should, and just hoped it would work. Thankfully, it did. I didn’t really get high. I was a bit mellow and smiley, but that was it. The amazing part was that I wasn’t in pain! I walked down a few stairs and it didn’t hurt! I held the tv remote in my hand, and it didn’t hurt! And then the best part: I slept! I slept deeply for about 9 hours and it felt great! I slept without noticeable pain. Today, I feel like a new person. Sure, I’m in pain, but I feel a lot better just from having slept. I won’t have more pot today because, really, if I took it whenever I was in pain, I’d be on it all the time. But if the pain gets worse, if I can’t sleep, then I’ll have more in a day or two. And at least I know it’s a decent option with no unpleasant side effects.

The interesting thing was when I told a friend about it this morning. She’s no stranger to pot. She smoked a bunch of times in college, and always thought it was weird that I didn’t try it until much later, in my late 20s. But as she’s gotten older, she’s gotten more conservative. She made a face (you know the type) and said how she’s not so sure about this whole medical marijuana thing. It’s not safe. It’s addictive. It shouldn’t be legal.

I was shocked. I pointed out the supposed safety of prescription painkillers. And their levels of addiction. And their side effects. She stopped talking, but I don’t think I convinced her; I think she just knew she was wading into dangerous territory. It’s one thing to suggest a better treatment, but dumping on the best treatment method I’ve found for myself? She knew I was about to get very pissed off. So she backed off. But now I wonder… should I try to make her understand? Because if she’s judging me, she may judge someone else. And she won’t speak up when she hears someone else making the same judgments.

I get very angry when politicians make these judgments, and it’s just as bad, or maybe worse, coming from friends who should understand my situation. I am not hurting anyone. But by denying a treatment, they are hurting me. How dare anyone judge how I choose to treat my pain? Especially when they themselves are not experiencing pain every single damn day of their lives. How dare they?!? If they have a headache, how will they feel if I take away their Tylenol? For that matter, what if I took away something that’s really not all that helpful or healthy but widely used, like coffee? Let’s make coffee illegal on the basis that it’s unhealthy and addictive, and then let’s talk about how people make decisions for their health. I bet a lot more people would be saying it should be a personal choice. Well, if coffee should be a personal choice, then so should medical marijuana.

At the end of the day, this is my body. It’s my pain. If I can lessen the pain in a way that won’t hurt anyone else, then why on earth would that be a bad thing? And what would give you the right to judge me for it?

2 Comments | Decisions, Educating, Fatigue, Frustration, Medication, Pain, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

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.

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Politics, Rants | Permalink
Posted by chronicrants

So happy I could cry: I finally have great-seeming health insurance

November 9, 2012

I’ve long since given up on going out on a Friday night.  If there’s a special event, like a friend’s birthday, then I’ll make the effort when I can, but otherwise, I just stay in.  I hope that changes one day, but for now, paying bills is the same to me on  Friday as on a Wednesday.

So I was going through my bills and other paperwork tonight, and I came across my new health insurance handbook.  It arrived in the mail earlier this week and I hadn’t gotten to it.  Unlike most people, I actually read these things.  Plus, I went to my PCP’s office today to show them my new insurance card and arrange a referral for my rheumatologist and they said I didn’t need a referral, so I wanted to make sure for myself.

I started flipping through the handbook, figuring I’d do a thorough reading later, but then it really caught my attention.  You see, I’ve always had employer-provided HMO plans.  With these plans, PCPs (primary care physicians) must give referrals for all specialists, and I pay premiums and co-pays for everything.  I’ve been lucky to have plans that didn’t have deductibles or co-insurance.  It was a very restrictive system, but it was the only one I knew.

That’s why I was shocked to find out about my new plan!  Now, I haven’t used any of these services yet, so I can’t be sure if they’ll work out the way they’re supposed to.  And I don’t know how long I’ll have this plan.  For one thing, I appealed my denial of medicaid, so I could end up with that instead of this.  And of course that doesn’t compare to the uncertainty of the long term disability insurance mess.  If I get the insurance coverage when we appeal, then I’ll get my old health insurance back.  I’d rather keep this new insurance, I think, but I definitely need to win that appeal so that I have an income.

I was accepted for this new plan despite my pre-existing health problems because Massachusetts rocks, and it was given to me without having to pay premiums because I have no income and Massachusetts rocks some more.  Believe me, I know how lucky I am!  But I was still shocked to read the details of this plan.  I can see specialists WITHOUT A REFERRAL!!!!  I feel like I’m dreaming.  This means that I don’t have to worry about whether or not my PCP agrees with my decision to see a certain doctor!  My big issue now is that I need to find a new endocrinologist, since my last one dumped me for being the cause of too much paperwork and too many expensive tests.  I’ve been worried about finding someone who practices what I think is best approach based on the research I’ve done.  Then, once I find them, my PCP would have to approve…. but not anymore!  I figure if I can see someone soon, then even when/if I get my old insurance back, my PCP would be more likely to go along with it because I’d already have seen the new doc (or she’d be pissed, in which case I’d find a new PCP.)

Even more amazing, there are no co-pays for visits, and the co-pays for meds are incredibly low.  Now again, this is a plan for people who have no income, so I know this isn’t what everyone gets.  Still, it’s amazing to me that they did it right!  They are offering free coverage to people who can’t afford to pay, so that we don’t get really sick and end up costing even more money to them later.

It’s amazing, almost unheard of, but I think I’ve finally encountered a health-related, government-related system that isn’t broken!  I sure hope it turns out to be as good as it seems, because right now, it seems too good to be true.

I’m sure all of you readers in other countries are wondering what all the fuss is about.  I just can’t even tell you.  Click on the “Healthcare” category in the sidebar on the right (you might have to scroll up or down) and you’ll start to understand just a little bit.  It’s really lousy here in the U.S when it comes to health insurance.  Most of it is linked to employers, and many people choose jobs based less on their passions, the work, or the job potential than on the health insurance that’s provided.  I really hope this ray of sunshine lasts for me, and that the new Affordable Care Act helps things!

6 Comments | Educating, Expectations, Healthcare, Medication, Politics, Raves, Support, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries
%d bloggers like this: