Obeying fatigue

December 9, 2011

I should be checking my cleavage in the mirror right now.  I should be putting on some lipstick.  A party is just getting started at this very moment in a house in Boston.  I don’t know most of the people there, but I know there will be a lot of cute single queer women.  But I won’t be one of them.  Nope, not me.

I don’t know what’s been going on these past few weeks.  I’ve been fatigued  in a way I’ve never been before.  I had blood drawn today so my doctor can check for anemia and whatnot.  And in the meantime, I’m staying home, canceling plans, missing out.  I even had to miss a support group meeting today!  Oh, the irony.

It sucks.  Keeping up with friends is hard when you have health problems.  Dating is hard when you have health problems.  But meeting someone to date when I can hardly leave the house?  Impossible.

So this is my grumpy post for today.  I’m pissed off, but not as much as I should be, because I don’t have the energy for that much emotion.  Instead, I’ll go watch a movie, eat some popcorn, and pretend this is my choice.  Yeah, right.

 

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Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

A “Holy sh*t!” moment

December 8, 2011

I’ve thought through all the possibilities, considered every angle, but that one question felt like someone slapped me upside the head.  Actually, no, it felt more like I’d been hit with a steamroller.  How had I never thought of that before?

Last year I applied for FMLA at work.  I was told that I got 12 weeks of FMLA total for the year.  I shrugged it off, saying that I wouldn’t need 12 weeks.

A few months ago I applied for short term disability insurance (STD.)  I was told how long term disability insurance (LTD) works, just as part of the application process.  I shrugged it off, saying I wouldn’t need LTD.  I wouldn’t need all of the STD.

Now I’m on STD and it will be lasting more than 12 weeks.  And suddenly LTD doesn’t seem so unrealistic.  Maybe I will need it after all?  But no, that can’t be.  If need be, I’ll just get a part time job.

Last night I told a friend that I had applied for a part time job.  I wasn’t looking for work, but a friend told me about a perfect opening at his organization, a place I’ve wanted to work at for years now.  It would be stupid not to apply, so I did.  When I mentioned this, she seemed surprised, and asked if it made more sense for me to get LTD instead (the requirement to apply is that I can’t do the work of my current position, which is certainly true now; to extend it beyond the initial period I would need to say that I couldn’t do any work at all, but that’s not a bridge I need to cross any time soon.)  I started to explain that LTD only pays a certain percentage of my salary, and as I was explaining this, I realized that I wouldn’t earn more at a part time job, and I’d probably earn less.  And the benefits wouldn’t be as good.  And I’d have to commute, and deal with the physical and mental demand of having a job.

BAM!

That’s when it hit me: I might need to sign up for LTD and be on it for a while!  Now, I have some time to figure this out.  I can be on STD for a bit longer, so I will wait until the time gets closer to make a decision.  Tomorrow I’m going to have blood drawn, and maybe my fatigue is just from something simple, like anemia.  I’ve never wanted anemia so badly in my life.  I will hope there’s a fix for this.  But in the meantime, I’ll be reconsidering all of the options I’d already considered.  It’s time to look at this from a new angle.

And maybe buy a lottery ticket.

 

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Leave a Comment » | Decisions, Expectations, Frustration, Job, Limitations, Rants, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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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Leave a Comment » | Educating, Expectations, Frustration, Isolation, Limitations, Medication, Politics, Rants | Permalink
Posted by chronicrants

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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Posted by chronicrants

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