How private is too private?

August 30, 2011

After 5 weeks of posting almost daily, suddenly there’s been silence.  Is it a coincidence that this happened when I moved to a new site?  Nope.

I was so excited for this move.  I immediately told two of the only people in my world who know that I write this blog, and asked them to share the link to the new site.  I should have been more specific, because one person shared the link with mutual friends who would of course figure out that I am the author.  One figured it out immediately and emailed me.  I was so upset, I was ready to shut down the site on the spot.  Luckily, a friend gave me some good advice, and I waited.

Now, I know I was a bit overly emotional from the Prednisone and Plaquenil and the resulting lack of sleep – who wouldn’t be?  Still, it went deeper than that.  I felt so exposed.  How would you feel if someone posted a naked picture of you up at work?  I might be ok with that, but I couldn’t handle this.  This was much more personal.  So I’ve been wondering, why is privacy so important to me?  And how private is too private?  What’s not private enough?

I’m always shaking my head at the fools who post very inappropriate things on the web for all to see, then are surprised when it reflects negatively on them.  If your personal web site has pictures of you drinking with friends and flipping a car, then sure, you might have trouble getting a job.  But this site isn’t like that.  This site is a place for me to vent my frustrations, and for others to find the comfort of seeing that others have similar experiences.  This site is constructive, not destructive.  Still, what I write is very personal, which is why I chose to set it up anonymously.

I always knew someone might figure out my identity at some point, but I didn’t expect it to happen to soon.  I’m starting to get used to the idea of these few people knowing, but I still can’t write under my own name.  My friends and family know about my illnesses, of course, and know many of my symptoms, but I keep a lot of the real, deep fears to myself.  We all have things we keep private.  I know I’m more private than most.  But am I too private?

I suppose there’s no real answer to this question.  I have to tell myself it’s ok to not know.  But I still wish I did.

Leave a Comment » | Decisions, Frustration, Isolation, Rants, Raves, Support | Permalink
Posted by chronicrants

How to talk about not working full time

August 25, 2011

Following up on yesterday’s post, I have to say, I’m very grateful to have the choice of working full time right now.  I may feel lousy, but at least I currently have the option of doing it.  I know many people don’t have that option.

When I think about what how nice it would be to not work, I wonder how that would be in social situations.  After all, when I meet someone new, so often the first thing they ask is, “What do you do?”  The last time I didn’t work was when I was unemployed.  Being “unemployed” implies that I will one day be “employed” again.  It’s temporary, so it’s socially acceptable.  Plus it was a recession, so that made it even more socially acceptable.

But what happens when it’s permanent or long-term unemployment?  I’ve wondered how I would answer that question.  Today I came across this amazing guide.  It gives some great dos and don’ts, along with fantastic sample answers to questions.

I have an easy answer to that “What do you do?” question now, but one day I probably won’t.  It’s good to have resources to help deal with that when it happens.

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Job, Limitations, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

How to not not work full time

August 24, 2011

My current goal is to not work full time in a 9-5 kind of job.  Sounds nice, right?  But I’m stuck on the making-it-happen part.

Health-wise, things have been getting worse over the last year.  Working full time is really not helping.  I don’t qualify for long term disability, and even if I did, it wouldn’t pay the bills.  I could get short term disability.  I’ve thought about that.  I’ve discussed it with my doctor and, to a limited extent, with my employer.  The thing is, it would only be a temporary solution.  It wouldn’t solve the problem.

So now my thinking goes like this: I could do some sort of free-lance consulting.  Then I could set my own hours, and keep things more flexible.  When I got sick, I’d lose money, but I wouldn’t have to deal with a boss.  Yeah, that’s a great idea.

Of course, until I get the free-lance consulting off the ground, until I’m earning some significant money, I have to keep my job.  That means that I’m trying to start a business in addition to working full time.  As you’ve probably guessed, this is not going well.  I get a lot of work done on the business once or twice a week, and nothing in between.  Still, I’m trying.  And I’m trying to stay positive, even with setbacks like what I had today.

Today was tough.  There was a networking event tonight.  I know the group hosting it, and so I know a lot about the people who were going to attend: the perfect demographic for my venture.  This was it, my first chance to really get clients!  And what happens?  Last night I started feeling the beginning of a downswing.  This morning, it was all I could do to get to work.  By the time I left work, all I could do was drag myself home.  Obviously, I had to skip the event.

But I know there will be more opportunities.  And until then, I’ll just keep working in slow, incremental steps.  Hopefully, one year from now I’ll be earning enough to at least scale my day job back to part time work.  And hopefully sometime down the road, I can quit my day job altogether.  Now, wouldn’t that be nice?

[And for those wondering about health insurance if I quit my day job, Massachusetts is the place to be.  I can sign up for the state-subsidized insurance and they can’t turn me away due to pre-existing conditions.  Yet another reason to put up with the snow.]

1 Comment | Decisions, Educating, Expectations, Frustration, Job, Limitations, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

When do we get *our* vacations?

August 23, 2011

Ok, this title sounds a little whiny.  Fine, it sounds very whiny.  But let’s face it, sometimes we’re just aching for vacations from our bodies, right?  Well, I ache for a vacation from mine, anyway.  I want some time without symptoms.  Please don’t get me wrong, I LOVE the days when the symptoms are diminished for whatever reason.  I savor those days.  I use them to their fullest extend.  But there’s never a day without any symptoms at all.

Actually, come to think of it, a day with reduced symptoms is sort of like an almost-vacation, and I think I’d be happy to have more of those, if they were somehow predictable or, better yet, if I could schedule them.  Gee, that’d be nice.  Can you imagine what it would be like to know that next Thursday would be a symptom-lite day?  Or to makes plans with friends and know in advance that you’d feel great, or that at least you wouldn’t feel horrible?  Wow, imagine that…..

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

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