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

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

Dating in the CI world

August 21, 2011

How do you date when you have chronic illnesses?  I’ve been doing it for years, and I’m still not sure what the answer it.  I read this post today, and it made be wonder how others get from single-and-scared to married/in a relationship.  How do they cross that huge barrier?

I’d like to to think that if someone could get to know me without knowing about my illnesses, they’d come to love me and not care about the CIs.  The truth is, that won’t happen.  There’s no way someone will get to know me without knowing about the CIs because I can’t get through more than one or two dates before something happens that clues them in.  I may not explain everything right away, but there will be some limitation that makes it obvious there’s something going on health-wise.  So how do you get past that fear of rejection?  How do you get past the fear of pity?

People do it every day.  I’d love to learn how.

Leave a Comment » | Expectations, Isolation, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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