A.S. Face 1003: D.I.

Face 1003 Face 1003a Face 1003b Face 1003cLike most, it took a lot of doctors, time, money and pain before my son was diagnosed. He is 26 now. Diagnosed at 22 or 23. His pain started pre teen. We attributed it to bmx bike riding, heavy PT in ROTC or playing metal music on his drums. Double bass. Self taught. He was always a very active child.

At age 17 he graduated high school and moved out on his own. He had a full time job as a pipe fitter apprentice, then went to appliance delivery. He was making about 2300 per month. Crazy for a 19-20 year old. He has always been slim but he started rapidly dropping weight and getting stiffer and stiffer. The pains in his joints were severe. He had to stop delivering appliances, which he loved, and took a job at a Chipotle’s. He made kitchen manager at 22. Very dedicated and loved his job. He has supported himself the whole time. Played in a few bands. One was getting a lot of notoriety. He was told he was the best drummer in central Florida by a recording producer. He was awesome. Seriously.

I would drive to FL from GA and bring him to different doctors to figure out what was wrong with him. He even took an Amtrak train a few times. We’d go to doctors with the same results. He was a drug seeker and they couldn’t find anything wrong with him other than being anemic. One day I told him to come home and I’d take him to my regular Doctor. The Doc walked into the room where we had been waiting. Looked at my son, tried to turn his neck, lift his arms and tried to get him to look up. The Doc says, I’m ordering a blood test to confirm this but he has Ankylosing Spondylitis. I went to school years ago to become a scrub nurse and I vaguely remembered learning something about AS. Of course we went home and looked it up on the the internet. Yep, that’s what it was. I was floored. Nobody in our family, either side, ever had anything like this. Yes there are a few people with auto immune problems, but nothing like this, other than his dad’s sister who has RA, Fibromyalgia, CFS and probably a bunch of other stuff. We never made the connection, but no know.

My son went back to FL and work, trying to live as normally as he could. He lasted three months after diagnosis and decided to move home because he just couldn’t do it anymore. He would have to work double shifts some times then go home and get in bed. Truck days were a nightmare. It took so much for him to get out of bed and to work. We told him when he was diagnosed that if he needed to move home it was more than ok. He did. He is frozen from the neck through thoracic region. His ribs are fused and he can’t take a deep breath. It pains me to see him sneeze. He can’t lift his arms above shoulder height and hasn’t looked up in years. We laid him down in a wheel barrow last winter so he could look at the stars. Trying to bring some humor to this NASTY Disease. He’s getting more and more hunched over and his spine is curving worse every time I check. Some days, even with the Pain meds and ibuprofen, he can’t get out of bed due to the stiffness and pain. He was finally approved and put on full disability. He was turned down twice. If you look at him you’d say if anyone needed it, it would be him. He was 6′, now about 5’10” and weighs 118-120. He does eat. LOL.

We all went through the depression, then the anger and one day he told me that he’s over it cause there is nothing he can do about it and life goes on. He does what he can. In the spring he helps me plant our garden until he gives out. Then he’s in the bed for 2-3 days. He’s become quite the movie buff/critic. He hasn’t been able to play his drums, they’re in our storage building, just in case….

Georgia, United States of America

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6 Responses to “A.S. Face 1003: D.I.”

  1. Dear D.I.
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. My deepest heart felt prayers go out to you and your son. He is a warrior!!! And you are his Angel nurse of a mother!!! It takes a lot for our loved ones to endure and watch us as we go through lifes toughest battles but we smile because we are thankful for each living breath. My email is rosealie73@yahoo.com email me anytime. My son and I both have AS and plenty of other medical conditions…. I would like to share a music video with him…always helps me when I feel like giving up…but I keep fighting cause it’s all we got to do!!! God bless him and your family. Always in my prayers….

    Rosealie

    Precious Rose face #770

  3. YOU are a wonderful MOM!!! I read your story, and cried. Your son reminds me of mine (my son, along with A.S., also had leukemia three times. He passed away almost three months ago at age 22 from the leukemia. He was my life, my friend, and so very, very special to me). My son was very thin and lean, like your son. He walked so hunched over from the pain from the A.S. and the leukemia. He was always in pain and was accused of drug seeking. We disregarded those people. Fortunately, we had a doc who knew that both of us had A.S. I am struggling through going to work every day for now, but I don’t know how much longer I will be able to. Your son has the right attitude, as mine did. He is so lucky to have you as his mom, caretaker, and friend. Best wishes to you and him. I will be praying and sending good wishes your way. Sincerely, Stephania (Face #445)

  4. D.I.: P.S. If we can get some better drugs, treatment, etc., for A.S., perhaps your son can eventually take those drums out & dust them off, and we will all hear him play one day!!!

  5. What a brave son you have. He has been through so much but he seems such a determined young man.
    It’s great that you are supporting your son in every way that you can. Wishing you all well and the best of luck.

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