Saturday, April 14, 2012

Neglectful blogger! I blame AS!

I know it's been forEVER since the last blog.  What can I say except FRUSTRATED here!  There are lots of experts out there for various things that happen to your body---I just want an ANKYLOSING SPONDYLITIS EXPERT!  Is that asking to much?

In the past couple of months, some of the comments from my Drs have been
these are true statements!

by the ortho dr
-you know AS in females is rare (in my mind I'm thinking not as rare as you seem to be implying because I know a LOT of females with it)
-you look great but you do look like you're in a lot of pain (seriously?!)
-me, it's my neck---doctor, it's not your neck, it's your shoulder--we'll do nerve conduction
-after nerve conduction--it's not your shoulder it's your neck--I seriously just want to scream at you right now doctor!!!! 

by the eye dr
-you're just too young and pretty to have such a disease (thank you sweet man-I do like him)
-I know you have eye pain but I don't see anything, I think you may need a cat scan with contrast to rule out MS (seriously?!)
-you know ortho drs just know bone (this made me laugh!)
-me, sometimes I think I know more about AS than the doctor---him, you probably do.

rheumy
---just very nice and quiet.  Spends a LOT of time with me..we talk about "stuff".  He writes and I wonder what he's writing.  He does exam and I wonder what he's thinking.

ok so I'M FRUSTRATED!  I want to talk with someone who knows AS!  So, I don't have SI joint damage and I show no signs of inflammation  in the blood work and your point is???  What??? 
FACT
-Over 25% of folks with AS show NO SIGNS OF SI JOINT DAMAGE
-Over 50% of folks with AS are sero-negative (they show no signs of inflammation in blood work, but HAVE INFLAMMATION) umm I know when I can't put my rings on or my ankles are HUGE!

and my last FACT--spell check I know how to spell ANKYLOSING SPONDYLITIS you don't

I guess I've just hit the frustration wall.  The frustration of living in co-pay hell right now.  Sorry for the bad language.  Frustrated that I had met my deductible when I told the ortho dr it was neck and now my deductible is doubled and he wasted time telling me it wasn't my neck.  New year, new deductible, NEW PROCEDURE!  Let me quickly add, that I'm thankful for my insurance---but I can be frustrated!

Yes, I have an auto-immune arthritis disease.  I don't have "arthritis".  Do you know that difference?

I have AS, but it doesn't have me!

2 comments:

  1. you rock! I also have AS and totally relate to everything you say! I think you might be my twin. would love to chat sometime! Just had to get off Remicade- did mot agree with me. So- clinical trials here I come!

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  2. I am just another AS mom who doesn't know how she going to get through another day. It is good to know I am not the only frustrated one.

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