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

Pain, pain, go away…

September 1, 2011

… come again, well, never

And just in time for the long weekend, the pain returns.  This sucks.  So much for lowering the steroids.  So much for the hope that Plaquenil might work.  I hope I can keep my plans for tomorrow afternoon.  It’s hard to know…. I may barely be able to walk.

Of all the many places I have pain, the toe pain is one of the more inconvenient ones.  Because of the pain in my wrists, I can’t use a cane or crutches, and a wheelchair is completely out of the question, so when the pain is bad, I limp a lot and try not to walk.  Combine that lack of movement with the steroids, and it’s no wonder I’ve gain a lot of weight.  Lugging around extra weight doesn’t help things, but it’s certainly not my biggest worry.

I had 3 other posts all planned out.  One is written, and two are composed in my head.  But then the pain, started.  I could feel it creeping up for the past two days, and then half an hour ago, it hit.  I know from experience that it won’t be going away too soon.  I just hope it doesn’t get worse too soon!  And I can’t think of anything else.  So tonight’s post is fairly self-involved, except I’m sure many of you know this feeling and may feel less alone knowing it happens to other people too.

So tomorrow, back to the higher dose of Prednisone.  Damn!  So close!

Leave a Comment » | Frustration, Isolation, Limitations, Medication, Pain, Rants, Unpredictable | Permalink
Posted by chronicrants

Whether weather matters

August 1, 2011

Weather is a real pain in the you-know-what.  We can’t control it, we can barely predict it, and it can have a huge impact on our quality of life.  So many chronic conditions are affected by the weather.  People have said, “Why don’t you just move?”  Yeah, that’s easy for you to say.  Have you ever moved to a new city without knowing anyone there?  I’ve done it.  It’s hard.  It’s really really hard.  And the weather was great, but I didn’t like the city, so I was pretty unhappy there.  Where would I be happy?  And where would I even feel better?  I can’t be in a place that’s too hot and humid, or a place that’s too snowy and dark.  And since I’d need a job, and I’m not a citizen of any other countries, it would probably need to be in the U.S.  That’s pretty limiting.

I don’t want to move.  My family is here.  My friends are here.  I would hate to leave the people I care about.  But I know I’ll move some day.  Every summer is worse than the one before.  Every year I question how much longer I can stay.  My seasons in Boston are limited.  I love this town, and I’ll be sad to say goodbye.  Until then, I’ll enjoy it as much as I can.  And stay indoors with the a/c.

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

For no reason at all

July 25, 2011

It’s amazing how suddenly symptoms can pop up.  There you are, just minding your own business, and they hit you.  Or at least, they hit me.  There I was, working on the computer today, minding my own business, when I felt the pain.  It was sudden and severe.  Now, since I was working on the computer, you’d think it would be in my back, my neck, my fingers, my wrists, my shoulders.  Nope, it was none of those.  That would make too much sense.  There I was, typing away, and I felt this horrible pain in my *toes*!  And it gets worse.  I was sitting cross-legged (yeah, yeah, it’s horrible for my posture, so sue me) and it was the foot that was off the ground that had the pain.  There it was, mid-air, and the pain attacked.  What’s up with that?  Ok, these things are unpredictable, I get that.  But are you kidding me?  Pain in my foot while it’s just hanging out?  That’s just so wrong.  If the pain’s going to hit, it should at least make a tiny bit of sense.  I know that’s asking too much, but sometimes I just fall back to wishful thinking.

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

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