The counter-productiveness of self-preservation

July 27, 2011

I need a job.  Well, I need an income, but I don’t have a trust fund or a wealthy spouse, so I guess I need a job. The more I work, the worse I feel, so I’m looking for ways to cut back my hours.  In the meantime, I have a basic 9-5.

I also need doctors.  Like it or not, I need them.  This week, I need them to help me find a new long-term treatment.  This is not a pleasant prospect.

So on top of having a lousy appointment to discuss long-term treatments which will no doubt have horrible side affects, I also have to wake up an hour early for the appointment, which will make me feel horrible all day, and then I have to work an hour late to make up for coming in late due to the appointment.  It’s going to be one long-ass day.

And that’s what happens when I try to take care of myself by balancing a job and my health.  Yikes.

Medications vs. Symptoms: Can there be a winner?

July 26, 2011

I’ve noticed that so-called “healthy” people often think of medications as cure-alls.  Have an ear infection?  Take some antibiotics and viola!  All better!  Gee, that was so easy.  But venture beyond your basic, easily-diagnosed, known-cure issues, and it gets more complicated.  Constantly queasy?  Take this and you’ll just be constipated instead.  Trouble breathing?  Just use an inhaler.  Oh, but watch out for the jitters.  Auto-immune issues?  Would you prefer the drug that will make you permanently infertile, or should we just skip that and go right to chemo?  Oh yeah, these are real fun decisions to make.

The thing is, in the big battle between the side effects of meds and the symptoms of illness, there’s no winner.  When the symptoms are worse than the side effects, it’s time to take the meds, but that doesn’t make it fun and it certainly doesn’t make it easy.  Every day (or week or whatever) you choose to take a pill or get a shot or otherwise receive something that you know will make you feel horrible.  But hey, it’s not as bad as what it’s preventing, so that makes it ok, right?  Well, maybe not.  At the moment, we work with the options we’ve got.    Still, that doesn’t mean I like the options.

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.

Getting adjusted… or not

July 24, 2011

I had an interesting conversation yesterday with a man who is frustrated by his daughter’s attitude.  She is in her late 20s, and he feels she should be getting a better handle on her health problems as she gets older.  He equated it to his age-related health issues.  At 60, he has aches and pains that he didn’t have in his youth, and he handles them.  He feels that his daughter should handle hers, too.

I explained that having predictable aches and pains at 60 is very different than having more severe problems at a younger age.  In addition to feeling worse now, she knows that she will likely be doing much worse at 60 than he is.  Her future is uncertain, and the bit of certainty she does have isn’t very promising.  Even illnesses that are unrelated to her CI (which he referred to) can be troubling.  They remind her of her weaknesses, and her CI may make things worse.

I wish I’d had more time, so I could remind him that when someone receives a diagnosis of a chronic illness, they go through the 5 stages of grief as they grieve for the loss of their health, the loss of their own idea of their future.  I would have reminded him that even though he wants his daughter to reach acceptance, and she will, that it takes time.  Even when someone does reach acceptance, they can slide back into one of the previous stages at any time.  I like to think that I spend most of my time in acceptance mode, but I certainly slide back into anger and depression from time to time.  It happens to the best of us.  He needs to be patient.

Now, having said and thought all of this, I need to say that he’s a wonderful, supportive father.  His wife is a wonderful, supportive mother.  I have known them for years, and I know that they have done so much for their daughter.  His frustration is natural, especially since his daughter can be quite moody.  She takes out her own frustration on her parents quite a bit.  She needs to work on that.  Hopefully one day, with time, maturity, and wisdom, she will reach that point.  Until then, I hope they can continue to be patient.

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