The oh-I-could-never-do-that response

September 17, 2012

Sometimes we do things that are hard.  Occasionally something is easy, but often it’s hard.  Very hard.  Damn hard.  We do it to improve our health.

So why do we do these difficult things?  Are we gluttons for punishment?  Do we enjoy the challenge?  Are we masochists?

Or are we people in pain?

Yeah, that’s what I thought.  The last one, right?  Me too.

And that’s why it pisses me off when someone hears that I’m eating a very restricted diet, or that I live with constant pain, or that buying groceries on a bad day is a huge effort, and their response is “Oh, I could never do that.”

At this point I figure they say this for one of two reasons (but please let me know if you think of another!):

  1. They don’t believe that my symptoms are as bad as I say they are.
  2. They can not possibly imagine how bad my symptoms are, because they have no frame of reference.

I want to believe that it is usually #2, that they just can’t imagine daily nausea that is so bad, you’re willing to cut your favorite foods out of your diet to be rid of it.  But really…. who couldn’t imagine that?  And if it’s #1, that just pisses me off to no end.  After all, these aren’t strangers, these are friends and family who are saying this.  They aren’t suggesting that it isn’t worth it for me to try these “drastic” measures of changing my diet or trying new supplements, but they say that they would never be able to do it.  Maybe they’re trying to suggest that they’re too weak to try and therefore I’m strong?  But in the context, that’s not how it sounds.  It sounds like the pain could never be so bad that it would be worth giving up desserts on the off chance that it might help.

So for all of you doubters out there, have someone whack you as hard as they can in the knee a few times with a hammer.  Now, would you rather have someone do that every hour, or would you rather give up chocolate forever?

Yeah, I thought so.

Could I be healthy?

September 13, 2012

When I wrote a couple weeks ago about being hopeful that maybe my health could improve one day, that was based on my own gut feeling (so to speak) that I could get better.  My doctors have not expressed that kind of hope in many years.  My new naturopath has seemed more optimistic, but she has never spoken about our end goal, and I was not ready to ask.  I was afraid to ask.

Today I steeled myself.  I took a deep breath.  I stared blankly at a spot on the opposite wall.  And I asked: “What do you think my prognosis is?  What’s our goal?”

She surprised me with her answer: “That you’ll go back to work, and that at the end of the work day you’ll still feel good and be able to do things.  That you’ll go out and do things on weekends.”

Obviously she misunderstood, so I clarified: “No, I mean, what’s our realistic goal?”

Imagine my shock when she said that yes, that’s the realistic goal.  So of course I asked when she thinks that might happen.

“Within about 1 year from now I expect you’ll be back at work.”

What?!?  I had figured she had a positive outlook for my recovery, but this was more than I had expected.  I didn’t quite believe it, and I still don’t.  1 year seems like such a short time.  After all these years of my body destroying itself, could I really be “cured” in 1 year?  Of course, I wouldn’t really be “cured,” but to be so much healthier seems like the ultimate cure to me.

Of course, she thinks that 1 year is too long.  She practically apologized, explaining that if I had gotten treatment sooner, before my conditions had taken such a toll on my body, then she could have reversed their affects more quickly.  Still, she has helped me more in the last 3 months than my other doctors have in the last 8 years.  And she says that we’ve “only scratched the surface” in terms of treating me.  So maybe it’s possible?

1 year.  12 months.  I can’t seem to grasp this.  Could it be possible?  Could I be relatively “healthy”?  Could I work full time and support myself, and still have the energy to see friends, pursue hobbies, date?  It just doesn’t seem possible.  When I wrote about my hopes before, they felt like a far-off dream.  I figured maybe in a few years, if I was lucky…. but 1 year?  That feels so soon.  Next fall.  Dare I hope?  What if it doesn’t happen?  Would I be too crushed?  But then, what if it does?

Some people dream of buying a bigger house, or driving a fancy car, or flying all over the world in a private jet.  I only want my health and my loved ones.  Could I really be within reach of having it all?  Could I be healthy?

Fire under my ass: Social security application DONE

September 11, 2012

It’s amazing what a little fear will do.  I was dragging my feet.  I admit it.  I didn’t really want to apply for SSDI; I didn’t want to admit that I’d still need it a year or two from now when they finally got around to approving my application.  You can’t really blame me,
right?  Who wants to think that way?  So I procrastinated too much before finally sending in the first part of the application, and then I got bulldozed with a short deadline for all the rest.

There’s nothing like getting informed that your future ability to pay rent is based on information you must complete right away, but it’s after 5pm on a Friday so you have to wait two and a half days to get details.  Not fun.  At all.

First thing Monday I called the SSA and got all sorts of details from them that really should have been included in the letter to begin with.  Now, surprisingly, I’m done.  I managed to get a document from my ex-employer’s benefits office and I got it in record time.  Apparently, when you complain to the head of the department about someone not returning calls at all, they tend to call you back quickly the next time you need something.  Thank goodness.  She emailed it to me, I printed it, and  I drove it over to the social security office in person today to drop it off.  I started the second application online over the weekend and made a list of questions for my lawyer, who also got back to me quickly on Monday.  Today, I submitted that application!

And now, I wait.  When I submitted the application I got the message that I’d have a response in more or less 120 days.  I guess they want to leave themselves some leeway, because they specifically said it could take more or less time, depending on various unnamed factors.  Right.  I’m not holding my breath for that 120 day response, but whatever it is, I’ll just have to take it.  At least this part is done.  Now to move on to the next set of paperwork….

It amazes me that there’s no one central location to find out about all of this stuff – what paperwork is needed, when the deadlines are, etc.  A friend suggested that I make a web site with all of the info I can find.  I just might do that, but first, does anyone know of one that already exists.  I’ve looked, but I could have easily missed it, and there’s no point replicating someone else’s work.  If you’ve seen one, please let me know!

Surprise! Your social security application is due NOW!

September 7, 2012

About 10 years ago I bought my first new car.  I negotiated a good price, got them to throw in extras like an extended warranty, and then moved on to the contract, where I proceeded, to the saleman’s chagrin, to read every single word.  It took a ridiculously long time, but I wanted to make sure I read it all.  I caught something important, actually, and had them change it.  I think it’s very important to read every word of these long, annoying contracts.  And I think the same is true of important applications, like for social security.

That’s why I’m certain that no mention was made of the deadline for the second part of the application when I was filling out the first part.  I would have read it.  And it would have stuck with me.  You see, the way it works is that first you fill out the main application.  Then you fill out the disability application.  Then, if you want, you fill out an application for SSI.  I read several times that my SSI application date was being set based on when I started that first application (and they only tell you that after you start!) but I saw no mention of the disability application, so I logically assumed I could just do it whenever I wanted.  Obviously I knew it had to be done somewhat soon so that they could start processing my application, but a few days here or there wouldn’t matter, right?

Obviously, I didn’t learn my lesson from the MassHealth paperwork procrastination.  I put off that first part of the social security application for a couple of weeks, but after that I did have to legitimately wait for my lawyer to get back to me with answers to my questions.  Then on Tuesday night, with a big sigh of relief, I submitted the first application online.  On Wednesday I drove over to the local social security office with my W2 and signed medical release form.  I felt good about this!  Then Thursday I was busy and today, well, I meant to work on that application.  Really, I did.  But, well, it would still be waiting for me tomorrow, right?  Or Sunday, definitely by Sunday.

Yeah, I know, I was procrastinating, but it was only a couple of days.  Then I checked my mail today and there was a letter from the Social Security Administration.  It said that I had 10 days (from the day I applied – which was already 2 days ago!) to submit a whole bunch of things, including this additional application!  I was horrified.  If they had said upfront that 10 days after the first application I’d have to have the second one in, I would have finished them both before hitting that “submit” button.  I could have prepared.  I would have done it all differently.  But of course they didn’t offer any information like that.  No, that would have been too helpful.

I read all sorts of checklists, but it wasn’t mentioned there.  I read the introductions to the forms and all sorts of boring information about the materials I’d need, but it wasn’t mentioned there either.  Now I’m really worried!  I started working on the application today, and I emailed more questions to my lawyer.  If I need to fill in certain info then I’m screwed, because it will take time to get my older medical records, and that’s time that I just don’t have.  And what’s this about wanting my short term disability pay stubs?  What pay stubs?  It was direct deposit, and really, shouldn’t the insurance company be reporting that directly to the federal government anyway?  Can’t the SSA see the IRS’ files?

Of course, I got this letter after 5pm on a Friday, so now I have to wait all weekend.  First thing Monday, though, I’ll be calling the SSA.  This time, there won’t be any procrastination.  I can’t afford to take that chance!

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