I’ve only been recently diagnosed with AS, but I’ve been looking for a diagnosis for over a decade. It all started in my early 20s with generalized pain and excruciating sharp pains coupled with swelling in my joints. At the time my blood work and clinical findings indicated lupus but there wasn’t really enough there to diagnose me. The rheumatologist also thought I might be heading toward a rheumatoid arthritis diagnosis, but there wasn’t any visible damage to my joints on the images yet, and my RF was negative. So, back in the early 2000s I was in diagnosis limbo and placed on a series of mediations that were under a lot of scrutiny at the time: Vioxx, Bextra, Celebrex. I was very sick on these medicines and I felt like I was drowning in a sea of pills from everything that was being prescribed. In the end, sometime in 2005, I just decided to “cut my losses” and drop out of treatment with mainstream medicine. I did see a naturopath and eventually an Integrative Medicine doctor, but my experiences were not as positive as the many people who have had success with those methodologies. Unfortunately, after about 6 years of just “hanging on” I had a severe downturn in my health. It all happened during the happiest time in my life too, which is sad.
In 2011 I gave birth to our charismatic little son. The pregnancy was miserable, with every complication I could imagine, followed by an emergency induction at 35 weeks after being on hospital bedrest. It seemed that my body never recovered, and over the next two years as I got worse my doctors seemed all too willing to let me blame any ache or pain on post-pregnancy healing… or to suggest I had post-partum depression. During that two year period we also moved, and the move was excruciating. I ended up needing my mom to come from out of state to help because my whole body locked up on me. It was at that point, where I went beyond pain and into immobility, that I promised my husband I would find a rheumatologist and get to the bottom of things. The worst part of all this has been the way it impacts my husband and son. The constant feeling that I don’t measure up as a wife or mother stinks, but the days where my husband has to do double the work, or my son wants to play outside but mommy can’t handle going for a walk are worse. When he sees the other kids get picked up for a better view at the zoo – well, sometimes mommy can do it (I guess he’s sorta-lucky that mommy is in the beginning of the AS journey because some AS moms couldn’t EVER do it).
After years of pain, and months on a wait list for this appointment, guess what this lady said? She said I was fat, and should lose weight! She told me to take some NSAIDs and come
back in 6 months. I’d like to point out that the 6 month follow-up (which I cancelled of course) was supposed to happen today as I am typing this. Everything I am about to tell you happened in 6 months only because I trusted my instincts and my body and DID NOT LISTEN to the doctor who tried to diminish my pain and suffering.
The next doctor I saw was a blessing! That doctor spent two hours going over my body and listening to me. I cried and she handed me tissues. She asked me questions I never would have expected. She explained how tissue necrosis from surgeries a decade prior were related to my suspected autoimmune diagnosis from the early 2000s. She told me that the preemie induction of my son was a clue! The loss of amniotic fluid was even a clue! Literally EVERYTHING was a clue! She had me do xrays! They took 26 vials of blood! TWENTY SIX! Granted, some were tiny vials, but still! She told me that same day that she was sure I had Sjogren’s and Reynauds. She suspects SLE but we are trying to rule it out. She also suspected an autoimmune inflammatory arthritis, and wanted to test more to figure it out… after a few months, we ended up doing an MRI and found fusion, and a variety of other problems, including nerve problems. With the clinical findings, the blood work, and the images, the diagnosis is in. I don’t have the gene. I’m a woman, and based on my symptoms I am sure I had it before the normal age range. I may not be in the majority of the statistics, but that didn’t save me from the cold, claustrophobic truth of the MRI machine. I have AS. I am one of the faces of AS.
I’ve been started on biologics, and I take a DMARD, along with those I take five others to manage other pain and peripheral issues. Seven isn’t a bad total for someone with the alphabet soup of autoimmune disease. Some days I need a little help from a cane, but as I continue treatment, just in the past 6 months!, I have found that I need the help less and less.
Georgia, United States of America