My Husband Has What?
I remember sobbing the moment my husband was diagnosed with ankylosing spondylitis. We were living together in Harrisburg, PA, just finally getting our lives going. But he had just spent a year bedridden from pain and immobility. We were 23. What the hell was going on?
We got married at 24 without a wedding to add him to my insurance. Luckily we were already engaged, we just decided to get the paperwork going earlier. In the back of my mind, I was terrified. Could it be cancer? Some kind of disease that will cut his life short?
Our doctor didn't believe him
The first doctor we met with didn't believe his immobility. My husband walked into the office using a cane, hunched over. He was our general practitioner. He was supposed to be empathic and listen. He didn't. He accused Keegan of making up his symptoms and "consciously tensing his muscles." I could see the shock and hurt on his face from across the room.
We pressed for an x-ray
Thank goodness we pressed for an x-ray that would show 2 fused sacroiliac (SI) joints. The doctor was quick to send Keegan to physical therapy and a rheumatologist. Feeling completely numbed by the experience with our PC and not trusting his referral, I found the best doctor I could with our insurance. We went to Johns Hopkins.
The blood test showed elevated inflammatory markers and Keegan was positive for the HLA-B27 gene. Rethinking it all now, it seems like an easy process, but this was 7 years in the making. Keegan is tall and thin. Being tall automatically meant he had back pain.
He started on a biologic
We moved to Philadelphia 2 years ago, and found an outstanding rheumatologist at Penn Medicine. Keegan started Humira at the same time after trying a variety of treatments, including NSAIDs, diet changes, yoga, physical therapy, and medical marijuana. Humira has changed his life, and it's let us start a family.
Then he needed hip replacements
But shortly after we had our daughter, his rheumatologist noted that while his pain and mobility was better in the rest of his body, his hips still weren't improving. She ordered an MRI and shortly after, Keegan was diagnosed with severe osteoarthritis in both hips due to AS. Yes, with a 4-month-old baby, Keegan had his first total hip replacement. The second followed this year in April.
Now things look better, but as a caregiver, new mom, and primary income earner for the family, it's been terrifying. I've never known if Keegan would make it through mentally and physically in the worst moments, but he's persistent and positive. It's an inspiration for me, and I hope for others as well.
How much about your AS do you share with others?