Tuesday, January 14, 2014

Great Amounts of Pain

For my absence, I apologize.
Things around here have been sort of hectic.
Of course, we had the holiday gathering at my parent's slash sister's place.  Although, we only stayed for a little while.  It turns out (though I already knew this) that my pain hates me quite a bit during the evening hours.  Therefore, night time activities or outings make me very upset.

But, nonetheless, the holiday season always tends to be a bit busy for us.  This year, despite the fact that we only went to one place, it was no different.
It always seems like the Christmas decorations are easier (and more fun, by the way) when they're being put up as opposed to when they're being taken down.  Or, as this years goes - practically being torn down.
I wasn't my usual organized self when it came to taking down this years decorations.  Year after year, I have marked boxes and bags - like "needs new light bulbs this year" or "garland for around the clocks" - explanations to that affect.
Next year, when we go to put up our Christmas decorations, I'll be one confused girl.
This year, since my pain was so great, everything was sort of just haphazardly taken down and thrown in various boxes.

My pain level...


What a grand and dismal feeling of my body.
I constantly have hot shards of glass in my feet.  I know I do.  Sure, they're invisible and only felt by me, but they. are. there.
And they. hurt. like. hell.
I keep a pain diary and a pain calendar.  The diary is for my own records.  The calendar is for the good pain management doctor.  He looked at December, gave me a look, and said, "Have you ever tried pain patches?"
Of course, I have not.
So, my pain is now (trying) to be controlled by things called pain patches.  Something called the .
Fentanyl Transdermal Patch.

I am to continue with my other pain killers as needed and for break through pain.  I take two rather strong pain killers every day, and I am not liking myself anymore. 
Not that I liked myself much when I wasn't on anything for my pain.  The only difference is that I am now a little less "pained" and alot more "fogged".

Some days, I get up, drink one of two cups of coffee, then I go right back to bed.  Either I didn't get enough sleep the night before because of my pain, or  my pain killers make me so drowsy that staying awake is out of the question.  
So, sure.  My new pain killing methods are working - somewhat.  It's just that now I am in such a fog, that I am losing sight of who I really am  - or who I am supposed to be.

I am so frustrated.  I am so let down.  I am so...

Enough of this silliness... Nobody wants to hear about how badly I hurt. 

Let's talk about something else...

My book.  I have been trying more and more to write in it.  It's going rather well.  A little while ago, I came to a part in my book that I wasn't sure that I wanted to include.  I decided that a "tell all" would have to include everything.  So, I included it.  And I also had to make some stuff up.  For the most part, if I am unsure as to how a conversation went, I will ask John and get his version.  And if he's unable to help me, I will just either try to leave it out, or fictionalize it.  I hate doing that.  But, some of it has to be fictionalized. 


Oh, yes. 
Olivia is over half way done with her school year.  I know that she's excited about being done for the summer.  Although, I have to keep reminding her that she still has a ways to go yet.  And that "slacking off" for whatever reason will not be tolerated.  She knows it.  Getting her to do it, on the other hand... well, that takes finessing on my part.  Homework time is usually filled with some arguing or a bribe or two...
She and I had a nice little break from all of that though during her time off from school. 

When I first started this particular post, I was going to do something to the effect of  "Sylvia's 2013 Year - A Look Back."  But, when I looked back on my year, it was usually the same thing, month after month.  Only a few things happened to me that was noteworthy in 2013. 
For instance, in January I was approved for Social Security Disability.  In March, I got my insulin pump.  In August, I qualified for Medicare.  And that was about it. 
So, doing my year in review seemed somewhat boring to me. 
Not that blogging about my pain is any more exciting.  I mean, who really wants to hear me go on and on about that.  It seems that I'll always be in some sort of pain, doesn't it?  It's not like my nerves are going to magically heal themselves, right? 
We really need a cure for small fiber neuropathy.  And for type 1 diabetes. 
That's what I'm really hoping and wishing for this year. 
To eat what I want without having to check my blood sugar or program my pump for the correct dosage of insulin.  To not worry about my neuropathy getting any worse than it already is.  To not have to worry about losing my eyesight.  That would be a superb thing to see happen this year!  And I know that we are so close, medically speaking, to just that!!!  Just hurry up and do it though!!!

So, anyway, that's about it.  I am sorry for my absence.  I will try harder not to let it happen again...
Thanks for reading, my dear, but few readers.
Till next time....