Pain is hard. This disease(s) is suffocating.

Day 33 & 34:
Yesterday continued much of the same. I did get Tate up for a little walk but she was feeling too poorly to join her online classes through APEX. Morphine for pain every two hours alternating between IV and oral with minimal relief has us feeling frustrated with the lack of pain control.

Poor sleep last night and port issues with dislodged needle and leaking again this morning with the IVIG required another sterile needle change. They can’t quite figure out why she is having trouble. Skin breakdown from the Behcets sensitivity to the adhesives continues to be a challenge. Resource had some good ideas to try.

Ivig runs again tomorrow and then we wait for rheumatology meds/steroids to work. If we can figure out how to manage the pain at home, we could talk about discharge. Rheumatology meds are slow and with little else to offer in the meantime….I prayed so hard a month ago that this was “just” appendicitis. It’s an emotional and practical uphill climb when you are discharged after a month + with only bandaids while everyone hopes the latest batch of meds works better than the previous. Pain is hard. This disease(s) is suffocating. Everyone seems to be out of ideas for pain control. Feeling weary today.