Saturday, November 10, 2012

Mid-experiment update

So it's the evening of day 2 of my "lie down constantly" experiment, my attempt to recreate the pain-free bliss I arrived at back in 2009 after spending a while out with a cold.

First time around, it took a few days for my pain to drop to its record-low level, so I've tried to be patient these first couple days as I wait to see what happens.  Yesterday, my pain went down and then back up, and I realized how much it could crush me if I can't recreate the results I had the first time around.  Putting all the pieces together, I've come to believe -- I NEED to believe -- that my vulvodynia is nerve pain and that all I have to do to get treated is find the right neurologist.  If my pain doesn't diminish significantly after five days of lying down...

Today, I woke up with sharp pain, but it has faded since.  At some point during the day, the burning stopped.  (Celebrate!)  Now what's left is a feeling of pressure, and the pain the pressure is causing.

I think the pressure might be from my gut, but I've also read that pressure can be a symptom of nerve problems down there.  I can't really tell what is what.  I'm just trying to make sure I poop in a timely fashion.

I was going to go into detail about the different kinds of pain that come along with my vulvodynia, but I had to stop.  Maybe I'll write that post someday.  Honestly, I'm having trouble writing this post.  Yes, this is an experiment, but I realized yesterday that really, I just want a break!  I just want a break from the pain!!!!!!!  A day!  An hour!!!!  It's UNBELIEVABLE to me that I've been in pain for six years!  All the time???  Really????  How does that even work?  Isn't it like a smell, where you don't smell it after a while?  Is there something wrong with my brain, my PERSONALITY that I can't let this pain go!?!!??!

I always end up blaming myself for it!!!!!!!!!

I feel so alone in it!!!!!!!!!!

I haven't been this "close" to my vulvodynia in a long time -- haven't spent this kind of energy thinking about it.  It is exhausting to think about!  I feel like I'll never be free!  This is why I shut it all down and packed it all away, why I stopped visiting doctors and caring about what I eat.  There's so much perfection in eating right and so much hope flushed right down the toilet over and over again in everything I've done trying to help myself.

Truth is, I know the next step is to see a neurologist.  I don't need to know what all the data looks like between now and Wednesday.  I know I'll feel better by then, even if not how much.  I just WANT to feel better!  I want that tiny little gasp of "this is what it's like"!  I had it before and I want it now!  I know it's there waiting!  I don't want to sit here pining for it but I am.

Sometimes the pain follows me around like a screech, even when I don't have it so bad.  At the mention of sex or when I'm about to cough, when I have to pee -- that FURTHER pain is right there.  I don't really believe I'll ever be without it.  But I know I can be!  There's got to be a treatment that will let me ALSO have a life...

I am angry beyond words.  At doctors, at a failed/nonexistent diagnostic process.  At the unfairness of it.

You know what the worst part is?  LIFE.  I feel like so much of my LIFE has been plowed under by vulvodynia. Sometimes it clicks in my head that I've had vulvodynia for six years and that means that my personality today is totally colored by it.  Oh, there's an Esther beneath, sure.  But these demons at my elbows -- who said they could stay?

Maybe someday I'll also write a post about the demons.

I don't know if I'm making sense.  I'm not going to edit this.  I'm actually doing fine, but I wanted to share these thoughts.  I'm trying not to think about all this.  I'm reading a lot.  A pair of Bones reruns comes on in a couple hours.  Best TV night of the week!

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