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

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…..

Leave a Comment » | Educating, Frustration, Medication, Politics, Rants, Symptoms | 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

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