How AS Ruined a Perfectly Good Life.......And The Pain Will Never Stop

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Up until 1978, when I was diagnosed, my life was pretty good. I was active; played tennis, handball, football etc. I was able to work a full day without pain. Was able to do things with friends and liked the way I looked. Then the monster came into my life...slowly via a mild back ache...then more pain and the eye infections...then the fusing. I was involved in a car accident that messed up my neck (fused some bones) and went to a chiropractor for a year. Then another accident which proved to save my life: the x-ray showed osteoporosis...if I'd gotten more treatments, they could have easily killed me.

During my initial treatment, we were in an HMO.My asshole of a doctor kept increasing my Naprosyn until I became toxic and started to bleed internally. Thank G-D I developed heartburn and was able to get upper/lower endosophies to prove it. Another six weeks without the heartburn and I'd be dead.

As I got older, the pain got worse; even though the doctors said it would get better once the fusing stopped. My pain and fusions robbed my wife of a husband and my kids of their dad. I could not to the typical things a man without AS can do.

I was able to work as a special ed. teacher for many years until the pain would not let me. I took a disability and was lucky to get SSDI on my first try. Even after I retired, the AS still bothers me. I broke some bones in my back while coughing (being on Enbrel lowered my immune system to the point where a cold becomes pneumonia). This coupled with COPD and the fact that my lungs are being squeezed in by my ribs makes breathing hard.

I have good days and bad days. On the good days, i do what I can around the house. On the bad, I can't even get out of bed.

I think the most depressing aspect of this disease is that no one can truly understand how AS affects us: the physical pain can be debilitating, the inability to have a decent range of motion, the psychological pain of not being able to play with your kids or be a good husband, the disappointments caused by your not being up to go to various events, the disappointments of new medications not doing a damned thing for you, the way your friends stay away, the having to give up those things you were able to do before AS (in my case-sports and playing the guitar), not liking the way you look-I am bent over pretty badly and look grotesque, avoiding social situations due to being self conscious about my appearance and mostly the fact that there is no stopping this fucking disease - it will continue to progress, the joints will continue to fuse (I've already lost the knuckle in my left hand's middle finger and can feel other joints in my hands getting bad) and the pain will never stop.....the pain will never stop.

To my wife: I'm sorry that you were robbed of a husband who could have done more than I could do. To my sons: I'm sorry that I could not be the father that could have done more with you.

The pain never stops; the physical pain can be lessened by those G-d awful pills but the emotional pain of having four lives fucked up by Anklyosing Spondylitis will never end.