A.S. Face 0775: Leigh Costello

A.S. Face 0775: Leigh Costello

My name is Leigh Costello and I am from Luebbering, Missouri.  I was diagnosed with AS in 1978 when I was 16.  I was born with a congenital deformity that required experimental surgery for me to even walk.  A lot of my “problems” were attributed to the birth defect.  Once diagnosed with AS, I was told to exercise a lot and I would have a fighting chance.  Not much information was available at the time.
In addition to the physical therapy to keep myself moving, I have exercised a lot.  And I still do, some days more than others.  After trying NSAIDS until my tummy revolted, I tried herbals.  I did most of my treatment on my own.  I was never sent to a rheumatologist until this past May.  I truly expected her to say I am getting old, take Aleve and get over it.  That did not happen.
I was diagnosed with Advanced AS.  And given 3 pain management drugs and Ambien for sleep.  I am awaiting insurance approval for Enbrel.  Some days the pain laughs and some days I laugh.  And some days, no one laughs.
My sacrum is fully fused, my hips are involved, as are my knees and ankles.  My shoulders have been operated on several times through the years due to impingement and rotator cuff issues.  My elbows…oh my poor elbows…had to have nerve transposition surgery on both because spurs were destroying the nerve bundles.  T4 and T5 are fused, T6 and T7 are fused, my neck is half way fused with soft tissue.  My rib cage is fused to my spine and is starting to fuse to my sternum.  I snap and pop more than rice cereals.
As you all can see, I slipped through the cracks.  But, now I know and now my pain has a name.  I gave my pain the name of Herman, as in Herman Munster, because I figure one day I will walk like he does.  It helps that I have large feet, too.
I sent a picture of myself and my daughter because she found this page for me.  She is my biggest supporter, after my husband.
Missouri, United States of America