You cannot imagine the stigma a construction worker faces when his body begins to fall apart on him. The majority of the world chalks it up to hard work or not being careful. Granted, Scott’s mantra tended to be, “Go hard or go home,” but the amount of deterioration seemed unjustified for his level of work. We had heard of cement masons dealing with shoulder issues or knees. Backs could be a challenge as well. But all of these plus small joints?

By the time we were preparing for a fourth surgery in six months’ time, I was asking the orthopedic professionals if this could be connected to autoimmune problems. “No,” they insisted, “it’s just that his work has taken a toll on his body.” Within a month, we were faced with the probability of at least three more surgeries. Now, we had problems with both shoulders, both knees had been replaced, the thoracolumbar spine was fused to T12, and there were potential issues with the cervical spine. By Thanksgiving, just 9 1/2 months after he stopped working, my husband’s toes were twisting in unusual directions. A family member suggested seeing a rheumatologist, which was challenging due to a lengthy wait to get in. Within one week of the first appointment, however, the diagnosis was made – Ankylosing Spondylitis – he was HLAB27 positive, which was one of the primary indicators of the disease, especially in light of his extensive spinal problems.

My husband was hugely relieved. “At least it has a name,” he said. No more lectures about having overdone it during his career. Of course, the treatments were another matter. We tried methotrexate plus prednisone, then progressed to various biologics. He had serious reactions with most. Eventually, the rheumatologist determined that continuing to try these powerhouse meds could decimate his immune system. Additionally, there was another autoimmune disease surfacing that demanded even greater attention. It too had a name, CIDP, and its treatment became a priority because of neurological symptoms. Being able to name the diseases didn’t ease the symptoms by any means. However, this did change the way in which some medical professionals discussed his needs as they realized that there was serious immunocompromise at issue. Before, it was not uncommon for his extremes of joint deterioration to be dismissed quickly by the medical community. One doctor observed that he had never had a patient in need of so many surgeries except in the case of a serious accident. Now, there was a sense of seriousness and concern. This lightens no load other than the social awareness that could be levied when someone would attempt to blame his industry for his condition. Sometimes, it’s helpful to know what giant you are fighting.