Then, as I posted, on 10/5 everything changed. The rate I was getting worse had sped up but we weren't alarmed. But as the doctor put it, "We went from a steady decline to falling off a cliff." He said his additional research indicated that I had moved into the middle stages of the disease. At that point I initially was having an average of 10 violent and very painful spasm episodes per day. On 10/31...None! Yesterday...None! So far today...None! Sounds great right?
What I just realized though is that I am on EXACTLY the same medication regimen now as when this started. So, that leaves LOTS of questions. So, looks great, but I don't want to be too hopeful. Honestly, I can't wait for him to walk in here on his rounds tonight. I feel like we need to make a "What if" plan. I'd much rather have a plan in place in case we, "Fall off the cliff again," as opposed to more ambulance rides, etc. I also want to see what his research says about flareups. I don't know if that happens with SPS or not. It is an immune disorder, but it disobeys so many of the rules of immune disorders that I don't trust my knowledge. Time and time again his research has been so much more fruitful that even if I look myself, I want to know what he can find.
No matter what, in just 5 days I will be sleeping at home and not here. Oh, I can't wait to fall asleep with my girls around me and wake to them again and not just be "visiting."