These days...

It's been days and days now.  Okay, three days.  But that is three days longer than I wish.  I can face the violent waves of nausea.  I can face the overwhelming pain in my abdomen. I can face the new waves of dizziness (from the blood pressure medicine).  However, I am finding it difficult to face all three together.  And my abdomen, whilst always painful now, has been swollen and so tender that I cannot really bear to be long away from my heating pad ... a heating pad I keep on high.  SIGH.

I find it rather interesting that the only other way I can ease the pain a bit is to curl up in a ball.  I have learned that others with dysautonomia and abdominal pain do the same.  Kind of flummoxes me, though.  Curling up in a ball seems the very opposite of what you would want to do with a swollen abdomen.  However, if I draw my knees toward my shoulders and lie on my side, the pain is more bearable.  Lying flat on my back with my legs straight is the absolute worst.

I've spent hours and hours on the bathroom floor and hours and hours in bed.
Hours and hours moaning and groaning.
Hours and hours trying to distract myself by streaming  S.H.I.E.L.D..

I stopped watching before the end of last season because I just cannot bear shows where the brilliant, psychopathic bad guy just won't go away.  Ward.  ARGH.  However, I started watching it again mid Fall, so I thought I would start from the beginning and re-watch until I got to the parts I miss.  Funny, I never thought about this as a show about trust and forgiveness, but it is.  Not to the degree that the remake of Battlestar Galactica is, but it is the same ... betrayal, fighting for your life, sometimes trusting your enemies.

Right now, Gemma is dealing with Fitz' loss from his brain damage.  I know that he is better from what I saw last fall, but it is heart-wrenching to watch.  Both his struggle and hers ... watching her friend suffer.

Today, I was going to start Chapter Two of the research book on shame, but I have not been able to concentrate enough to read ... even read on my Kindle.  Re-read on my Kindle.  My favorite books.  My comfort books.  I just finished the tenth (and latest book) in my beloved series (Chronicles of Elantra) and after trying two different new (free) books, I went back to the first in the series.  For once, I do not mind my faulty rememberer.

But I didn't hang out with Kaylin, either.
I moaned and groaned.
And fiddled with Amos' curls.

Tonight, I've been having chest pains.  That's par for the course with Dysautonomia.  Wonky nerves malfunctioning in your chest.  Fearsome because you worry, constantly, about having a heart attack.  In fact, if you hang out on forums and Facebook groups, you will see posts about going to the ER again and again with chest pain.  Frustrated posts because nothing is done.

It confuses me why they go.  Even when I am gasping for breath against the pain and out of my mind with worry over keeling over dead, I would never go to the ER.  I would never spend the time and energy and expense to get a cardiac workup for something that is neurological in basis ... something for which there is not much you can do.  The ER isn't about managing chronic illness anyway.  It is about stabilizing patients so they can get treatment elsewhere.

To me, those posts are like Amazon.com reviews where folk get all mad at a product for not doing what it wasn't designed to do.  For example, I bought the Oxo shower caddy some time ago.  It is designed for a traditional shower head, not one that detaches from the wall.  The bad reviews were all about how it didn't fit those shower heads.  I see that type of review frequently, just as I see that kind of anger post about the chest-pains-ER-visit.  They don't make sense to me.

It is something I have talked with two doctors and my counselors about.  I am content with my diagnosis.  I am not interested in genetic testing to narrow down the exact cause the way that most dysautonomia folk I see in those forums and groups do.  I am also not interested in repeating tests over and over and over again.  The tilt table test, for one, is quite dangerous.  And repeating tests still will not cure an incurable disorder.  Why waste the money?  Why put hope in the futile?  Why go from speciality clinic to specialty clinic when there is no real treatment, no cure.  There is just what works for one ... which will most definitely not work for all, or even most.

One doctor and the counselor said that I have already moved toward acceptance and that chasing cures is about denial.  Only much of the time I feel as if I live in denial.  After all, I still struggle to treat myself with the care my failing body needs.  I push and push and push.  Or at least I did up until a few weeks ago.  I'm trying to change.  And then I have days likes these, which often lead me to thinking I am useless and lazy and should just go out and force myself to accomplish something.  Funny, I think I might have done that tonight had the chest pains not started.

At least the chest pains are random and not constant.
Now, at least, I better understand what is happening physically.
I fear them less, even if I do not find them easier to bear.

So not much reading or studying or learning.  Not much of anything but moaning. Of course, I have been pondering what I have learned and what I might learn next.  And I have been in the company of my Fluffernutter whilst writhing with innards misery.  No fire tonight, but maybe again on the morrow.