Monday, May 14, 2012

The fine art of self loathing

I'm going to wallow in self-pity here.  It's not a crisis.  I'm venting.

Humira isn't kicking in.  How long does this take?  I know, it's only been a week and that it can take months, but I've been being treated by a good rheumatologist for six months now and nothing is working.  Is it me?  Am I going to be one of the 30 to 40% who respond to absolutely no drugs for RA?  Is he wrong?  Is there something else wrong with me?  I know there are blood markers, etc. that are supposed to verify my illness, and I know that some of mine are exceedingly high, but I've never asked which ones or what they mean.  I've trusted him completely.  Maybe he's wrong, though.  Maybe there's something else wrong with me and I'm taking all these scary drugs for nothing.  Is it heresy to doubt your nice rheumatologist?

He wants me to try Actemra if this doesn't work.  He gave me spiffy pamphlet on it.  I don't want to do IV drugs.  I'm not that sick.  Or I sure as hell don't want to be.  Plus, the common side effects include a rise in blood pressure, which I can't afford.  My blood pressure has been a struggle for months.  If I let him hose this drug into my vein and it has a half-life, what the hell happens if my blood pressure shoots up?  Yes, it's pretty clear I need to make a list of questions for Dr. L and ask them at my next appointment.  I just want to go to a doctor and be FIXED!!  I don't like all this complicated medical crap.  I need a straightforward minor infection that can be healed with antibiotics, not all this rheumatoid arthritis garbage.  Where do I apply for a change in illness?

My son is driving me nuts.  B has always been such an excellent young man.  He still is.  Absolutely wonderful. Well behaved.  Sweet and kind and caring.  He just doesn't give a flying fuck about his grades at school these days.  He's 16 and needs to get his poop in a group.  I wonder if he's afraid of growing up.

Same lovely son as in previous paragraph has a band concert tomorrow night.  They will be performing one of HIS compositions.  That's right.  My brilliantly talented boy has composed a piece for symphonic band that will be played by his school - and the kids like it.  How amazing is that?  I think it's extremely impressive and I'm intensely proud of him, yet I'm still wondering why the hell he can't pass history.  Oh, he can pass it.  He just doesn't care!

Diablo III comes out at midnight tonight.  This is one of the best games ever, and I was an early player of the first two versions, many MANY years ago.  I'm thrilled to have this one coming out, and I'm dying to play it.  I beta tested for it, and what little I played had me itching for more.  But get this:  I am such a crappy human being that I'm resentful I can't spend all night awake playing video games because I have to get my son to school and go to work and be a responsible adult the next day.  I probably won't get to play much until the weekend.  (And I wonder why my kid doesn't give a crap about being a grownup?  Hush.)  I'm really not crazy about being a responsible adult lately.  I'm tired of it, in fact.

Monday, May 7, 2012

The Will to Fight

Hello there, poor nearly-abandoned blog!  I really didn't mean to do this to you.  I had the best of intentions.

The thing is, my mother wound up hospitalized last week, and there was a lot to deal with.  It seems she went into a-fib and didn't know it until a routine doctor's appointment last Monday the 30th.  Her GP heard the heartbeat, pushed her into a wheelchair, and took her across the street to the hospital where she stayed until Friday at 6:00pm.  They can't get her heart back into its normal rhythm.  She's constantly in a-fib and is now on coumadin (which is also used for rat poison, did you know that?) to help prevent her from throwing a clot to her brain.  She has congestive heart failure, which probably won't kill her before her COPD does.  They can't shock her back into a normal rhythm because her COPD couldn't withstand it.

She's a complicated health case, most of it because she has a long history of smoking.  She's 75 years old, which isn't as old as it once was, but seems to be getting pretty close her limit.  I'm trying to adjust to that concept, so pardon me if I sound cavalier about it.  Nothing could be further from the truth.  It's just that I need to be able to say it until I can accept it.  This is my mommy.  My sister, my children, and myself will never be ready to let her go, but we are learning to accept that she does not want any sort of extraordinary measures taken to save her.  We spent hours with various doctors before her release going over the what-if situations and filling in all of her living will and medical directive stuff.  She doesn't even want CPR because of the diminishing returns in people with COPD - odds are she wouldn't survive it, and if she did, her quality of life would be minimal.

How long does she have?  No one knows exactly.  The cardiologist and pulmonologist both say "she has a good while.  Probably a few years.  Who knows?"  She looks small, pale, and tired.  In spite of that, she's her feisty self, which is good.  She's fighting with my sister about lawn sprinklers, so she's healthy enough to do battle.

How am I?  Well, the notion that my RA might respond negatively to stress has certainly been proven.  I can barely walk.  Can't get closed toe shoes on to save my soul.  My hands are stiff and sore, my ankles feel like knives are being driven into them, and my feet are just horrendously painful.  No one else gets it, though.  There are way too many other things to be concerned about, so I suck it up and soldier on and try not to complain because what good is it really going to do?  I see Dr. L on Wednesday.  Twice weekly Enbrel isn't getting it, but would anything when I'm this stressed out?

I've missed too much work to stay home and wallow in self-pity.  It's raining and would have liked to stay in bed and read or knit.  Not today.