STD and SSDI: Who designs these things?

December 7, 2011

I visited a friend yesterday who was recovering from surgery.  He had built up a lot of sick time at work over the years, since he is generally healthy, so he will use sick days to cover his month out of work.  He has an understanding boss, who knows that he may need to take off extra time.  His health insurance covered the majority of the costs of the surgery.

He asked me how I’m doing, and how I’m managing to be out of work.  He meant financially.  My friend is smart and well-educated, but he got a new kind of education from me yesterday.

First, we discussed how my short term disability (STD) works.  I’m lucky to have an especially good plan.  We talked about how poorly my boss handled my exit, which makes me wonder if my reentry will be difficult.  We talked about how I want to return to work part time because I’m worried that returning full time will lead to a quick relapse.  Unfortunately, it is up to my boss whether or not I can return part time.  If she allows it, then I will return to work a few days a week, and STD will cover part of my salary for the days I don’t work.  Of course, at some point STD will run out, at which point I’ll just earn a whole lot less.  I should be able to cover all of my bills, but I won’t be able to put any money into savings.  Of course, I need to put money into savings more than ever, as I’ve realized that my body will force “retirement” on me much earlier than I’ll be able to afford.

Then we talked about social security (SSDI.)  We discussed how I may not even be eligible for it.  If I am eligible, then the application process is long and arduous.  Most people are denied and then need to appeal.  If I were to get approved, it could take two years.  For those two years I wouldn’t be working, so I’d be draining my savings account.  The amount I would get would be just a bit less than what my rent is now.  It wouldn’t be enough for electricity, gas, or groceries.

Now, let’s say I did get SSDI.  I have a fluctuating illness.  I have weeks and months and years where I feel better, then I feel worse.  When I feel better I could work.  But I’d lose SSDI and if I needed it again, I’d have to start applying all over again.  That’s why many people are on SSDI even though they are well enough to work.  They know that getting off SSDI now would be devastating if they ever needed it again.  So they stay on it even though they are well enough to work.

My friend just shook his head in sadness, thinking of the many, many people caught up in this horrible system.  And I’m one of the lucky ones: I have STD, I have family to fall back on, I have good health insurance, and I have a little money in my savings account.  I could be so much worse off.  But I am wondering how to pay for the acupuncture treatments that I just started today.  My health insurance doesn’t cover those.

When when I consider all of this, the insurances and the government “help” and all the rest, I just have one question:

WHO ACTUALLY THINKS THIS IS A GOOD SYSTEM?

I don’t know who it is, but I’d be willing to bet that they don’t need to use the system themselves.  If they did, they’d be working to change it.

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Up and down, down and up

December 4, 2011

I never liked roller coasters and I’m ready to get off this one right now.  Really.  No joking here.

I won’t say that I was ok with my illness fluctuations when they occurred over weeks or months, but at least I learned to handle them.  Having fluctuations every day, or even every hour, though, is so much more difficult.  Let’s take the last few days, for example.

Friday morning I felt blah, but I pushed myself to keep my lunch plans with a friend.  That cheered me up, and the fresh air helped a lot, and I felt fantastic for several hours.  By the time I got home I was completely exhausted.  I crashed on the couch for the night, watching tv and knitting.  So, that was a down-up-down-down day.

I felt lousy on Saturday, then felt worse, then felt much better for a while.  I pushed myself to go out.  Unfortunately, I wore myself out and spent the evening and night watching two different movies and knitting.  So that would be down-down-up-down-down.  Lovely.

Today was bad, but I was able to pick myself up for a while and keep plans with friends, then I felt worse, then better, then worse, then better.  So…. down-up-up-down-up-down-up.

How is anyone supposed to adjust that quickly?  Making plans with friends is getting harder and harder.  I had to leave a movie tonight partway through to rush to the bathroom.  This was worse because I was on a date!  I still haven’t figured out how to bring all of this up with him, but that’s a topic for a different post.  In the meantime, I’m just trying to figure out how to not constantly cancel on people.  Blah.

While I’m not working, I need to be busy every day so that I don’t get too lonely and/or depressed.  But it’s hard to make plans when I seem to feel lousy at some point every day, and most days I have a period of exhaustion where I don’t want to move at all.  Last night I didn’t even feel up to typing a quick blog post!

I didn’t like roller coasters as a kid at the amusement park and I don’t like them now.  I can’t wait to get off this one.

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I promise you, it’s no vacation

December 1, 2011

A medical leave of absence is work.  It’s hard mentally, physically, and emotionally.  I’m sure that some people who ask about my time off as if it was a vacation mean well.  They probably just don’t know how else to ask.  They feel awkward asking directly about my health.  But then others really do seem to think that it’s a vacation.  They seem to think I’m having a ton of fun, enjoying myself, living it up.  I’m so sick of those people.  I just want them to live in my body for a day or two, just so they’ll understand.  This is no vacation.  This is hell.  I would love for it to end.  I hate my job, but I would gladly go back if it meant I was feeling better.  But it doesn’t work that way.  I feel like crap.  When I find myself watching tv in the middle of the day, I start getting depressed.  I wish I could go out more and do more.  I wish this was fun.  But it’s just not.  No, this is definitely not a vacation.

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The 1/2 mile decline: reaccepting old limitations

November 30, 2011

When I moved into my apartment, I didn’t even consider walking to the grocery store.  Even if I could have walked the 1/2 mile there, I knew I couldn’t carry groceries home.  So I drove to the store.

Over the years, I increased my walking.  I finally got to where I could walk that distance.  Then I worked on carrying.  The day I carried a quart of milk home I was ecstatic.  When I carried home 1/2 gallon of milk, I could hardly believed it.  I still drove to the store when I had to get a lot of heavy things, but when I just needed a few items, I could walk!  It even got the point where I didn’t think too much of the walk.  It was an effort, of course, but it was very doable.  As long as I was having a good day, I knew I could do it.

My recent decline has been tough.  I’m trying to continue to get at least some exercise, like short walks and running errands.  Today was 60 degrees and sunny with a slight breeze.  Perfect.  I needed just a few things at the store, so I headed that way.  Halfway there, I was exhausted.  I wanted to come home and get the car.  No, forget that.  I wanted to come home and sit on the couch!  I pushed myself, though, and made it to the store, stopping just before I got there to sit on a bench for a few minutes.  Walking through the store took much more effort than I’m used to.  By the time I paid for my groceries, they felt surprisingly heavy.  I sat on a bench again for a few minutes before I left the store.  Then it was time to trek home.

The walk home felt longer than I remembered it being.  Did the street stretch out?  I just kept putting one foot carefully in front of the other.  I stepped over the tree roots pushing up the sidewalk, felt bad for the 3-legged cat that was meowing piteously, thought about how much I wanted to sit down.  When I got home, refrigerated stuff when in the fridge, the rest was left on the counter, and my butt went to the couch.  I had to rest for a long time to get over that.

I’m glad I pushed myself (well, I say that today; I’ll have to see how I feel tomorrow.)  It felt good to get some fresh air.  My knees hurt less after I’d walked for a while.  I know it was good for me.  But emotionally, it was tough to realize just how much I’ve declined.  It took so long to build up to that simple walk, and now it’s been snatched away from me so damn quickly.  I’m not ready for that.  I could accept that I wouldn’t improve more.  I was ok with that, actually.  No, really, I accepted that years ago.  But I could not,  I can not, accept getting worse, especially not so soon.  I always knew it would happen “someday,” that mythological day in the distant future.  I’m not ready for it now.  Not yet.  So I’ll do the only thing I know how to do: I’ll accept it so that I can fight it.  I may fail, but at least I’ll try.

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