A.S. Face 0746: Shelly

Face 746Hi, my name is Shelly and I was diagnosed when I was 35.  There is some sense that the “growing pains” I experienced into my 20s were probably early indicators.  My AS has presented itself differently from a lot of others – it’s afflicted my extremities, legs and arms.  I had both hips replaced 5 weeks apart at 38 and then both knees replaced at 44, both done at the same time.  I’ve had to be stronger than I ever thought possible – but no one is going to tell me I can’t do something!!  My rheumatologist says it hit “hard and fast and did a lot of damage all at once” then seemed to go into “remission” such as it is.  Recently it’s flared up in my ankles and have lost range of motion in my arms – elbows and shoulders.  Because my case is so “different” she has put me in a study – guess it’s nice to be unique?!  With this latest flare up we are looking at new treatment options as I have been okay with just Celebrex.  Prior to surgery we tried Enbrel and methatraxate, but my joints were too far gone.  From the deterioration of my hip and knee joints, I was tolerating off-the-charts-pain – that little smiley/frownie face chart just didn’t cover it! – she laughing told me I’m not a good determinant of pain since I lived with bone-on-bone deterioration until I had the surgery and what others would describe as pain I call more bothersome – but it is pain, I just don’t want to give in to it.  My lesson there with regards to surgery – and advice to others – DO NOT PUT THAT OFF!  I was immediately without pain even the morning after hip replacement and put myself through a year of hell based on fear.  My ortho surgeon says I’ll likely need a new set in my lifetime, to which I replied, “by then you’ll be able to take a toenail clipping and grow a whole new hip joint for me!”  I think a positive attitude is everything in dealing with this, but will confess to moments where I just sit and cry.  I’m so glad to have found this site where there are others who understand what I have been through.  I try very hard not to allow this to impact my day and modify activities when others are around so I don’t have to make it a point of conversation.  My last visit with my rheumatologist, she was talking about “living with AS”….”the only days I’m living with AS are the days I’m HERE, the other days I’m just living!”  Much bravado, but it’s my intention that my body will follow my mind and not be defined by the restrictions AS is imposing on me.

I wish everyone good health and strong minds to meet this menace head on!  God bless!! ~ Shelly

Texas United States of America

One Response to “A.S. Face 0746: Shelly”

  1. Dear Shelly,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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