The joy and joint pain of autumn

September 18, 2012

I love autumn.  The heat and humidity of summer are gone, and with them a lot of my extra fatigue and other symptoms have gone.  And it’s pretty.  The sky is clear most days, the leaves change colors (they’re just beginning now,) and the air is crisp.  I’m happy every time I look out the window and see the lovely weather.  This picture is from last year, but you get the idea.

Of course, right now we’re in a transitional time.  Right now, summer is mostly over, but not quite.  And it’s mostly autumn, but not entirely.  We haven’t transitioned completely to the cool days yet.  Sometimes I’m hot in a t-shirt and sometimes I need a sweater.  It’s mixed.

And we all know what that means, right?  If you don’t experience worsening symptoms during spring and fall, then you’ve probably heard from others who do.  My rheumatologist says that her phone rings constantly in the spring and fall.

For me, spring is definitely worse.  My body seems to know that bad times are coming, with summer on the way, so it goes haywire.  But autumn isn’t the easiest thing either.  For the last couple of weeks, it seems to have manifested itself as worsening joint pain, especially in my fingers and wrists.  Now, I’ve had pain in these areas for more than 20 years, so it’s not like I can’t handle the pain itself.  What’s bothering me is that no movement causes stiffness, and small movements from fidgeting makes it worse.  Big movements are good, like washing dishes or cooking or sorting through a pile of books (as long as they aren’t too heavy.)  And the problem is that I just don’t have enough of these big movements to keep my joints happy.  I’m home a lot these days, so I’m open to suggestions for things I can do at home to keep my fingers and joints useful without using up too many of my spoons.  Typing on the computer or reading or watching tv all seem to be bad things for my achy hands, and that’s how I usually fill my days, so I’d love some new ideas.

How’s autumn for you?  Is it a rough transition, or is your body just glad to be out of summer?

Good luck during the changing of the seasons CI folks!  At least it’s pretty.


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.


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!