If there is CNS involvement, which seems likely at this point, I'll stop Benlysta and start something stronger. Like everything else in autoimmune disease, this involves a trade off: greater risk of infection and more side effects for less Brain Wrong (my highly scientific term).
I told my Sweetie what's going on, that was hard. I don't want him to see me primarily as a sick person or to worry. He's been very supportive. I haven't told him my theory that autoimmune disease attacking my brain makes me an auto-zombie, it feels too soon.
|Ella snuggles have helped
I had a Benlysta infusion yesterday and if that kicks in I'll start feeling better tomorrow or Friday. If not, eh, I will muddle through.
Positives, because I like to end on an up note:
- I have a fantastic new rheumy
- I still have friends despite being sick most of the last 3 months
- Sweetie--I can't believe my luck
- My mom, who's been great.
- Internet knitting friends :)