I want to be strong. I want to exude positivity. I want to be a superhero in the fight against RA. But those attributes don’t seem to describe me at this time. Rather, the reality is that I’m a like puddle on the floor. Spilling into the cracks and across the floor. Spread thin. Hard to collect back into the vessel. Evaporating into air. Reduced in volume. Heading towards the drain.
Ok, enough embellishment. But the lack of posts here speak to the general situation. After 2 1/2 years I stopped taking Rituxan infusions after it was clear it wasn’t working. I started taking Xeljanz, stopped for a while when non-stop migraines ensued, and started back up recently. But any impact on pain and energy is not yet realized. I resorted to a steroid dose-pack last week.
To add insult to injury, the past 4-5 months have been a coughing bonanza which a pulmonologist is trying to figure out. Thus far a lung function test showed some abnormalities but x-rays and CT scans did not reveal any visible issues. A week on an Advair inhaler (steroid and bronchodialiator) resulted in another week of non-stop migraines so that was halted. After breathing in a nebulizer for 20 minutes while locked away in the doctor’s office, I was able to hack up a sputum sample. That was sent to the lab and culture results await.
In addition, steroid injections into the left hip and right shoulder didn’t help knock down pain and swelling. An ultrasound-guided injection deep into the hip joint is scheduled for December 30. Imaging of the shoulder showed bone damage and active inflammation around the acromio-clavicular (AC) joint which is where the collarbone meets the shoulder. The orthopedic doctor mentioned that the long-term solution is to surgically remove the tip of the collarbone.
At times I’ve probably stuck my head in the sand and ignored the mounting impact of RA on the ability to work and engage in regular life activities. To that end, an exploration into applying for disability is underway. While raising a whole other set of issues, it’s probably for the best in order to help the puddle from spreading too thin.