For people with hives for years.... How do you work???
I'm going on year 4 with pretty severe urticaria. It was controlled with Xolair for a bit, but the doctor decided to space out the shots by an additional week (going from every 4 weeks to every 5 weeks) and they immediately came back FULL FORCE. I'm now getting Xolair every 2 weeks for and 4 weeks into that, the hives are still very bad every day, all over my body includong my face in addition to lip and eye swelling.
It's so bad, I can't wear normal clothes, I'm exhausted from getting poor sleep, it's burning and itching, I'm taking like 8463829 antihistamines and painkillers and they're STILL super uncomfortable. How do you work? I've gotten super lucky with work flexibility so by some miracle I still have a job but the unpredictability is so awful.
2020 - hives started during lockdown so I could work from home and was already getting flexibility with hours because I have 2 small kids at home 2021- quit my job to move family overseas so even though the hives were bad, I didn't have to leave the house much. 2022- got a new job but immediately hives got very bad and I had to work from home or take sick days a lot. I do data analysis so I don't really need to be in the office, although my work gives me a hard time about it. Somehow I'm not fites despite extremely erratic schedule. 2023 - hives very bad. Lots of sick and work from home days. Doctor wrote me off work for 2 weeks in April then 50% work through the summer. Returned to work in the fall after starting Xolair in June. Hives didn't go away but got much better. Returned fully to work in the fall but hives returned. Got Prednisone and after that they were under control with Xolair. 2024 - under control until doctor adjusted Xolair timing. I'm now several months with severe hives everywhere. I feel like I'm tolerating them way worse, maybe because I'm exhausted by this whole thing. Had to take a week off due to severity of condition. Currently on vacation sitting in a hotel room miserable while my family has fun somewhere else.
...is this forever? I don't know how I can continue this. I feel I will be fired literally any day and I have zero control over this.