Counting the cost...

Of course I have to be that small percentage that gets the CSF headache (low pressure headache or spinal headache).  I emailed my GP yesterday and called the neurologist's office today.  The treatment is a blood patch, but I cannot have one scheduled.  I'm supposed to show up an an ER and ask for one.

Yeah, right.  Like that's going to turn out in my favor.  Plus, it is expensive.

The old school treatment is high doses of caffeine, fluid loading, bed rest.  I have not been able to crawl into bed and stay there for the duration, because I still have my dear friend here.

I should have called by Wednesday.
I should have rested more.

It rather stinks to have to endure the spinal tap and then the agony of the CSF headache.  Every time I cough or bend over with my head tucked down, I get these get these stabbing pains that are worse than the pain of a migraine.   I could could pretty regularly because Sjögren's has my throat so dry of late, but I am trying not to do so, for I think I shall about die whenever I do.

After hanging up with the nurse, I went to see if the cramps medicine that I still have on hand was expired or not, since I knew it had caffeine in it.  It has not.  60mg.  I took that and drank a Dr Pepper.  Since the pain eases whilst lying down, I am not taking it at night, but I will as soon as I get up in the morning.  I think ... I think that there has been a bit of an easing in the pain when I cough.  The neck pain is much better.  However, the ringing in my ear is getting louder.

I am weary of being ill and I've done my darnedest, whilst Becky is here, to walk and talk and move and eat and play as if I am not ... at least not that much.

I have neglected the drops in my eyes and this evening, both eyes suddenly turned into the Sahara desert.  It was the weirdest thing. I was putting drops and gel by the gallons and I did a heat treatment.  Finally, my the dry, scratchy agony in my eyes eased.  I think it might have been the world's briefest flare.  That or another stab at me by my foe.

The only good is that I did not become grumpy with Becky.  I was scared, but I think I did a great job of stuffing that fear far down inside and just doing a bit of light worrying out loud.  I sure do not want to lose my vision.

And I am terrified that, since the duloxetine appears to be muting just a bit the constant shocking in my hands, I will have to give it up because of the dryness it causes.  I really, really, really want to make this medication work for me.

One finally note when it comes to medicine:  I just don't know if I will ever become accustomed to having saliva again.  The pilocarpine works for about four hours, so I have a two hour gap of effectiveness in between doses.  However, I just cannot afford more pills.  Once I take one, usually within 30 minutes or so, I have this rush of saliva.  It is so very weird and yet oddly wonderful and comforting.  One can hope that mostly covered is not too far off from needing cover.

I'm listening to the trains running through town on their way to somewhere grand.  I, too, wish to elsewhere. Where am I?   Where am I going? 

Where am I?
Where am I going?