The dreaded look of genuine concern

September 3, 2011

I have found that there are three types of concerned looks.

First, there is the look of fake concern.  I’m sure you know what I’m talking about.  Someone doesn’t really care, but they try to look concerned because they know that’s the socially acceptable response.  I ignore those.

Next, there is the look of detached concern.  This is the one where someone really does feel bad for what I’m going through, and they want to sympathize, but they’re not close to me, so their concern is more general.  This is the concern you would feel for a stranger when you hear about something terrible they are dealing with.  The concern is real, but it’s not personal.

Finally, there’s the look of pure, honest concern.  This comes from a loved one who really cares.  Their concern is genuine.

It’s this last one that’s haunting me right now.  A friend recently asked me about my latest treatment.  I answered her with the truth, something I don’t tell many people.  She asked about other options if it doesn’t work.  Again, I told her the truth.  Now I can’t get the look on her face out of my head.  She was really concerned about me.  I wanted to reassure her that everything would be fine, but of course, I don’t know if it will be.  I love that she cares.  But that look just makes me feel bad.  I hate that I’m making people worry.  Of course, I’m not the one making them worry, it’s the illness that makes them worry.  It just doesn’t always feel that way.

She is one of my oldest friends.  We’ve known each other for 22 years.  (Wow, I guess I’m older than I thought.)  We did our elementary school science fair project together.  We’ve seen each other through divorce and dating and children and many jobs.  Of course we care about each other.  I just wish I could tell her I’ll be ok.

Leave a Comment » | Expectations, Isolation, Kindness, Pain, Rants, Raves, Support, Thoughtfulness | Permalink
Posted by chronicrants

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

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!

1 Comment | Kindness, Medication, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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?

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

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