Thursday, July 5, 2012

Just another day with Ankylosing Spondylitis

I would love nothing more than to log on and say---I have no pain today or better yet, I'm in remission.  I've heard a few folks say this and then I wonder did they have A.S?  The same AS I have cause everyone that I'm aware of having what "I" have--there's NO REMISSION.  

Yesterday was the 4th of July!  Happy 4th everyone!  Those of us with AS woke thinking will I make it today.  If you're wondering...no I did not.  I couldn't manage an all day event.  Went to the parade.  Then went to see my beautiful Laney Ann sing---stood outside in the heat.  So, no fireworks.  Too much pain and exhaustion. 

GREAT NEWS Laney Ann's CD has been pre-released!  And she's giving 10% of all July sales to AS!!!  Research and knowledge is what we must have!!!!  You can listen and purchase her music at http://www.tatemusicgroup.com/epk/?id=17500 
EXCITING!!!
http://www.tatemusicgroup.com/epk/?id=17500   one more time ha!

Today is the one day a month I dread and love at the same time.  It's my infusion day!  My dread..well, we got a new infusion nurse.  She's nice, but I really LOVED the past one I had and his "fill in" as well.  I sooo wish that they had given the "fill-in" the job.  This new nurse takes too long.  Usually has to stick me more than once and last time tried to prop the IV pole on a box to get it higher.  Made me a nervous wreck to say the least!  All I could think about was the pole falling and hitting the guy next to me all the while ripping the IV out of my arm.  So, I just held the pole in my lap.  Yes, I did just say that I held it.  That's the dread..the new nurse, the stick, the sitting for hours.  The love--I'm so ready for the medicine.  My body is screaming today.  SCREAMING! 

I think the level of activities and the heat is trying to reek havoc on me.  Who knows why some days are better than others.  Some call our really bad days a  "flare".  Seems if you "flare" then you'd also have times where you weren't "flaring" (don't know if that's even a word).  There's always pain.  There's always something going on!  Which leads me back to the good days and bad days.

So next week I'm supposed to be getting an epidural injection in my neck.  I've changed it several times already and not because of being scared of getting it.  I'd like to actually see if it would help.  The head/eye/neck pain has really been "flaring".  BUT yes it's a BIG BUT, I need to give them about $1000.00 at the time of the injection.  Yes, I do have insurance (thankful I do and my choice to do so) but this is my cost with the coverage.  I could go all political on you right now but to keep it "clean".  Just simply we live in a free America, so if you don't want to purchase broccoli you shouldn't be told you MUST.  So back to the $1000 I keep thinking what if I pay this and then nothing.  What if it does nothing and I've wasted all that money.  Then I think what if it helps.  What if I get some relief.  It's sooo expensive!  UGH!   Anyone just have $1000 sitting around to throw my way--it's a gamble--50/50 chance that I'll WIN! Crazy way to think about it??!!!  Oh well--just the things that float around in this achy head of mine!

Seems I've written about nothing today.  My point of this nothing is to educate as well--those of us with a chronic, life altering, no-cure, disease think on these type things daily.  

AS has my body, but NO ME!

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