Get your flu shots while you can

August 31, 2011

Shots are very controversial.  I get that.  But for those who want shots, and who are at high risk (if you’re reading this, there’s a good chance you’re high risk) then it’s a good idea to get one.

Also controversial is the government’s role in healthcare.  That’s a topic for a different day.  Or maybe for 10 different days (I have a lot to say on that topic).  Regardless of what you think and believe, the government does play role in healthcare.  In this case, it plays a role in flu shots.

I just read that the state of Massachusetts is going to offer fewer shots this year.  In fact, it’s going to offer fewer than half as many shots as it did last year.  If you have health insurance, you won’t really be affected.  If you don’t have health insurance, you’re probably more in need of the shots, and will have more trouble getting them.  Great job guys.  Really, good going.  I get that times are tough.  They had to make budget cuts.  But when people are dying of the flu this season, maybe the idea of throwing that extra cash into the rainy day fund won’t seem so brilliant anymore.  I hope I’m wrong.  I hope these 14,000 shots suffice for all who need them.  I really, really hope I’m wrong…..

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.

Welcome to my new site!

August 28, 2011

I am so excited to finally own the domain!  I have also moved my web site over to WordPress, so I need to do some tweaking to get everything just right.  Please comment to let me know any changes you think I should make.

Thanks for your support!

Hurray for good docs

August 26, 2011

I’ve had a lot of bad doctors.  A lot.  “Bad” can be defined in a lot of ways.  For me, these include not taking me seriously, not fully listening to me, refusing necessary tests, and prescribing treatments that are unlikely to work.  And then there was the one who said I shouldn’t complain because there are people worse off than me.  I was in pain 24/7 at that point.  Oh, and I was 16 and scared.  What a jerk.  But I digress….

So I’ve had bad doctors, but I’ve also had some really good doctors.  The good ones make such a huge difference.  I spoke to my rheumatologist yesterday and was reminded again of how fantastic she is.  When I started the new med a few weeks ago, she told me she would be going on vacation, and to call the day she returned.  I left a message and she called me back later that day.  She took her time with me and didn’t rush, even though she must have been very busy.  She listened to everything I had to say.  She was surprised by a side effect I’m having, which she had never heard of.  I told her I’d found evidence of it online.  She assured me she’d look into it.  Based on past experience, I know she will.  Otherwise would brush it off, but she takes it seriously.  I told her I’d like to take a new Lyme test I’ve heard about.  She didn’t know about it, but promised to look into it.  Again, I’m certain that she will.  Her treatment suggestions are always well thought out and specific to me and my situation.  She orders every test that she thinks is necessary and skips the ones that she thinks aren’t (Checking vitamin D?  Yes.  MRI?  No need this time.)  This is how I would like every doctor to be.  She’s not perfect; she’s human after all.  But she does a great job, and does her best to improve my health.

So here’s to all the great doctors out there, who do all they can to make us feel better/less bad!

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.

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.]

How sick is sick enough?

August 24, 2011

How do you define “sick”?

Ok, now how do you define it when it relates to taking time off work?  Are these two different things?

I woke up feeling lousy.  I thought about staying home, but dragged myself in to work anyway.  Why?  Well, if I thought that staying home would have helped me feel better beyond today, I probably would have done it.  This time, I don’t think that staying home and resting would have helped.  I tried it several days ago and it didn’t do the trick.  I would have felt better today, but not tomorrow or the next day.  Still, it was tempting to just call the boss, say I felt lousy, roll over, and sleep for another three or four hours.  Oh, that would have been nice.

How do you make these decisions?   It’s not easy if you work full time and have a limited number of sick days.  Besides, these sick days aren’t just for chronic illness stuff.  If I get a cold or sprain an ankle, I need to have some sick days left to use.  So what is “sick” enough to make it worth taking the day off?

Yet another reason why working full time with a CI sucks.  Anyone here disagree?

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