New pains both literal and figurative

April 3, 2013

The thinking used to be, “That hurts! I better see a doctor.”

Now the thinking is, “That hurts! Damn! I hope it doesn’t last.” And I go on with my day.

Sound familiar?

I’ve been thinking about pain today. In the last couple of days I’ve started feeling pain in new  places. There’s my left elbow, and a specific spot on one wrist. That’s not good. Add to that old pain that’s gotten worse over the last few weeks. Then don’t forget the regular pain that seems to have new triggers that I haven’t figured out yet. And the fatigue and digestive problems have gotten worse too. Not good.

There are a few possible reasons for this new pain. It could be the change in season. It could be all of the added stress from the insurance bullshit that I’ve been dealing with. It could be that the universe is just cruel. Who knows? I sure don’t. But if I had to guess, I’d point to the stress.

That brings me to the other pain: the figurative pain in my ass. Almost two months after I expected a decision on the long term disability insurance appeal, I just received notice of a third delay. They did not give a reason at all. None. Really, I’m not kidding! They just said they couldn’t meet the deadline so they were setting a new deadline. I believed them the first time, but not now. And this comes just a few days after I was denied SSDI again. I knew the SSDI appeal would probably be denied, but when I saw that envelope, a little part of me hoped against hope that maybe, just maybe, I would be approved.

No such luck.

So now it’s April. My bank account is getting scary-low. I don’t know if I should be packing up boxes to move out of my apartment. If I need to move, I’d like to get started. But if I’m not going to move, I don’t want to squander all of that energy on packing – I’d rather use it on searching for doctors! Of course, searching for doctors is hard, because if I win the LTD appeal then I have one insurance and if I lose then I have another insurance. Some of the doctors I’m finding take one but not the other. How can I move forward with treatments when I don’t know which health insurance I’ll have tomorrow, next week, or next month?

So yeah, LTD and SSDI are a huge pain in my ass.

It pisses me off more when I hear stories about people fraudulently getting money from the system. How do they do it? How is it that healthy people are getting approved and I’m not? I really don’t get it! What are they doing? They could probably make a lot more money by helping legitimate applicants like me apply in such a way that we’d get benefits. If they can do it, why can’t I?

I’m tired of justifying myself. I’m sick. I look healthy. Both are possible at once. Get over it.

So this adds up to a whole lot of pain in my life. The figurative pains in my ass are translating to literal pains in many other places. I can only hope this all goes away soon. Before I lose what’s left of my patience and my coping abilities.

11 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

A letter to my disability insurance company

March 28, 2013

Dear Assholes,

To begin with, I am a living, breathing, feeling human being. I know that may be hard for you to believe, but it’s true! I have thoughts and feelings, just like you. Well, not just like you, per se, but like most human beings.

Next, let’s consider that I am very sick. And remember that stress makes my illness worse. And not having a source of income while also dealing with you and with lawyers is very much a stress-inducing situation.

Now, let’s look at our goals:

  • My main goal is to get my health back. My secondary goal is to get you to give me the money you owe me so that I can pay my rent and, importantly, pay for medical treatments that aren’t covered by health insurance.
  • Your main goal is to save money by never paying me. Failing that, your goal is to save money by getting me to go back to work so that I no longer need your payments.

Please correct me if I’m wrong about your goals, but for the sake of this letter, let’s assume they’re true. First, are you really saving money by denying my claim? In this process you are paying staff to handle the matter, lawyers to handle the legal aspects, and doctors to review my files. My guess is that many of these people are paid at a high hourly rate. Are you really paying them less than you would be paying me if you had just approved my claim to begin with?

Next, you want me to work. If I work, you don’t have to pay me. From my file, you should see that I want to work also. I have a solid resume. I have held multiple jobs in the past, even while suffering from chronic pain. I have worked almost non-stop (except for school) since I was 14. When my symptoms got worse in 2011, I tried to continue working past when I was really healthy enough to do so. I continued because I wanted to work. So of course I’ll return to work as soon as my health allows it. This means that our goals now align: you want me to be healthy enough to work and I want me to be healthy enough to work.

So how do we get me healthy enough to work? Well, I am pursuing various treatments. There have been three things that have slowed me down which you can help to improve:

  1. When I lost my health insurance, that slowed things down. I had to skip seeing doctors. I couldn’t pursue treatments. I had to stop taking a vital medication for a month, then spent another month recovering from the affects even when I resumed taking it. Gee, thanks for taking away my health insurance.
  2. Money is an issue. There are tests I would run and medications I would take, but I can’t afford them right now. If you had given me the payments you owed me, I would have done these things.
  3. Stress is very bad for me. It has been preventing my adrenals from recovering from my adrenal fatigue, and that in turn has worsened my thyroid problems. In fact, just in the last few months, since you jerked me around by delaying your decision on my appeal, my TSH has jumped from way too high for me to way too high for anyone. Stress has increased my fatigue and my pain. Stress has prevented me from making any strong strides towards improvement. Of course, I only have two sources of stress in my life right now: my health problems and this insurance mess. Why is this insurance mess causing stress? For a few examples, I don’t know if I can renew the lease on my apartment. I don’t know where I’ll be living in a couple of months. My bank account is almost empty. I have spent years and years of savings. I can’t go out to eat with friends, go to a museum, see a movie, or do most other social things, even on the rare days I feel well enough to do so. I’m not sure if I should be selling my car (but how I would I get to doctors?) or get rid of my cell phone. I don’t know if I should be applying for Section 8 housing. These are major issues that are in limbo, and have been in limbo for a long time. Oh, yeah, and I haven’t been able to file my taxes yet!

Let’s see how you could help:

  1. Approve my claim and I’ll once again have steady health insurance coverage.
  2. Approve my claim and I’ll have enough money to run all of the tests I need and to take all of the medications that might help me.
  3. Approve my claim and my stress will go away almost completely. My adrenal glands can recover, and then we can treat my thyroid directly.

You see, if you would just treat me with some decency and respect, if you would approve my claim and meet your deadlines, if you would communicate with my lawyer so that I know what’s going on, then we would all be happy: I could get health and go back to work, and you could save money.

Now ask yourself: why aren’t you doing it?

Not-at-all-sincerely,

                 A pissed off patient

4 Comments | Expectations, Frustration, Healthcare, Insensitive, Rants | Permalink
Posted by chronicrants

How do you rate yourself?

March 14, 2013

Self assessment is never easy, and it’s certainly not accurate. This can be true for the way we look, the way we act, and the way we speak. Lately, I’ve been thinking about it in terms of my health.

First, there’s the vague stuff. If I’m feeling good on the day I see the doctor, I’ll focus on my progress. If I feel bad, I’ll focus on Pain scalethe setbacks. That’s just natural. At 3pm Tuesday the doctor may make one assessment of me, but at 11am Wednesday it would look completely different. It’s hard not to have a selective memory based on mood, especially when brain fog is already an issue.

Of course, that also doesn’t account for the inability to differentiate periods of time in my mind. How have I felt in the last 2 months compared to the 2 months before? Are they kidding? In the middle of March, I’m supposed to compare January to last November? On my best days before brain fog I could sometimes use association techniques to make a wildly inaccurate comparison. But now? Forget it!

Then there are the more specific ratings, like the pain scale. We all know the pain scale, right? You tell your doctor how much pain you have, with 0 being no pain and 10 being the worst pain you can imagine. They always seem to ask about the pain I’m experiencing that day, even though that day could be an aberration. And talk about subjective! I explained to my rheumatologist the other day that the pain started when I was a kid. After all these years, after experiencing new levels of pain, after gaining the perspective of an adult, of course my pain scale has changed. My 17-year-old pain 8 is now only a pain 6 or so. I report a lot of pain 2 and pain 3 days now, and even some pain 1 days, but the same pain 15 or 20 years ago would have rated at 4 or 5. There’s no good way to reflect that in the medical record. And there’s no objective test for it.

I’ve heard of people using a similar scale for fatigue, but my doctors haven’t suggested it yet. For that, they ask about how much activity I can do in a day and how I feel afterwards. Again, there’s a lot of selective memory there. I don’t like it, but I can’t help it. I’m only human, after all. And it’s just all too easy to forget about the walks I accomplished, or to ignore the days I wasn’t able to leave the house.

I’ve had three medical appointments in the last week, and I think they each got incredibly different views on my health. Sure, it’s partly because they each know different things about me, we have different histories, and they focus on different things. And it’s partly because of the time of day I saw each, the distance I had to travel, the stress surrounding the visit, and how much activity I had done in the days prior.

As always, it comes down to the idea that we just need to do our best. And that’s what I’m doing. I just hope it’s good enough.

 

1 Comment | Educating, Fatigue, Gastrointestinal, Healthcare, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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.

6 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Insensitive, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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