My story is different, but whose isn't?
I was adopted at 18 months of age by the Wyoming cowboy version of "Ozzie and Harriet". At the time Colorado was a "closed records" state, which would become important later when I sought information for the purposes of determining the possibility of several diseases with strong genetic components. My upbringing was dysfunctionally normal.
My Dad and his four brothers were my heroes. Dad tended to things Stateside during WWII because polio had essentially destroyed his right knee, but he kept on ranching as best he could. My uncles all served. These five men taught me that you didn't complain about pain or injuries unless and until you're completely incapacitated. No pain, no gain. Real Men don't complain. I discovered a Purple Heart belonging to one of my uncles and asked him why he didn't display it. His answer? "Why should I get a medal for being foolish enough to get shot badly enough to need a medic? I find that one embarrassing." Later in life I felt the same about mine.
I'm not sure whether it's a blessing or a curse, but I have an immense tolerance for pain; procedures doctors and medics have performed on me which made them flinch had little effect on me.
As a teen I played football, hockey and pairs figure skating. I was into theater. I was a skier, I climbed mountains, biked, ran, etc. My lower back hurt all the time. I figured that was just part of the deal. Nothing changed noticeably after high school. I joined the Army, and not halfheartedly. I went Airborne. Then Ranger. Then Pathfinder. Still, I just thought pain was part of the deal. I was taught that the real name for acetaminophen was "Ranger candy". I learned to live by the acronym FIDO, as in "You can't straighten your back without a crunchy sensation, trooper? F*** IT! DRIVE ON! HOOAH! CHARLEY MIKE! (Continue Mission)."
One day some fool kicked a 300 lb. box of really sensitive explosives out of the back of a truck and I caught it, preventing a general disaster. I created a personal one; I felt my lumbar spine crunch and couldn't feel anything but excruciating pain for the next six hours. I was medevacked to the hospital, where I was told (without an x-ray) it was a mild sprain; they gave me a handful of Vicodin, five days in Quarters and chewed me out for complaining.
After getting out I couldn't afford medical care but I didn't care. I could live with the pain.
I did so for thirty years, even through two Reserve stints where I held my own physically with the kids.
My back and neck were "crunchy", but I figured that was part of entering middle age. I had a desk job and took up golf to stay in shape since my knees, lower back and hips could no longer take running. Of course, I took up golf with the old hypercompetitive Ranger mentality. I played and practiced and practiced and played until I had a scratch handicap. One afternoon, about a month before I was scheduled to play in a qualifying tournament for the Champions (read: Seniors) Tour I was playing a round with my boss, who had been in the Hooters Tour. I was -4 and two strokes ahead of him, having just birdied the par 3 16th. I teed off on the long par 5 17th. As I started my downswing a bug flew into my face and my spine "unloaded" awkwardly. I felt the "natural" fusion II was completely unaware of between L4 and L5 crack; it was like being hit at the beltline by a bowling ball, followed by the insertion of two hot copper wires down the sciatic pathways all the way to the feet. I collapsed. They thought it was a heart attack. I told them I tweaked my back and struggled to the cart. I tried to finish the hole and was ashamed I couldn't finish the round. I was sure I would be able to sleep it off and be back to a tolerable level.
After three months I lost my job because I couldn't work with the pain. That meant losing my insurance. Fortunately I had VA to fall back on. They made the diagnosis. After viewing the MRI my Primary Care Physician said she was surprised I can walk at all. It wasn't "late onset"; the AS had been progressing untreated for thirty years, and it isn't remitting at all.
There isn't much VA can do.
On mornings when the .45 in my nightstand gets tempting I look at the picture of my grandson and granddaughter and leave it alone. They love Grandpa and I owe them that.
I guess I'm addressing my story primarily to guys. If your body hurts chronically, especially your lower back, don't ignore it. Get it looked at. If you're adopted or if you know there's a history of AS or related diseases, insist on the blood work. The price of ignoring it is way too high.
I get by the same way I've stayed sober from alcohol for thirty years--one day at a time. I'm here to learn how to accept AS, which, due to my own neglect, I cannot change. I'm here to try to learn from all of you how not to die as a lonely, surly curmudgeon. I'm here to cheer on those who still have hope.
I'm here because I belong. I'm glad you're here too.