Benlysta, flow study, flu shot

I noticed I had a little boom in views on here last week. I don’t know why, but thanks. 🙂


I had Benlysta #whatever last week. I’m losing count. But next month it will be one year. The doctor, my mom and I are all sort of on the fence as to whether it’s helping or not. Before this past infusion I was waking up in the morning like I used to, a writhing ball of pain. But then I noticed after I had it, I wasn’t waking up like that anymore. I still hurt in the morning, but not at 4am, and not on the same pain scale. Also, the itching has seemed to quiet down in my legs. At the same time, while of of that is great, I’m still unable to do activities at a normal and relatively pain-free level. I just feel like I’m not where I should be at. I’m still ruled by the sickness. I have this muscle weakness I can’t seem to pull myself out of no matter what I do. I’m also having some pretty terrible digestive issues, along with other things. My rheumatologist seems to think this points to a neurological cause, and I don’t disagree, but I wonder how much of it can be attributed to the chiari. She wants me to see a neurologist to investigate, but I’m going to push that appointment off until I see the neurosurgeon again.

I had a cine MRI flow study done on Monday. It was just like having a regular MRI, but I wore a little heart monitor on my finger. They are of course looking for a blockage, a finding that would explain a lot of things. I’m hoping to get answers on that soon. I want to know what’s going on with that before I see a neurologist. The neurologist doesn’t seem to think any of my symptoms are chiari-related, which is pretty typical of neurologists. I want to go in there and tell him what the neurosurgeon says before they go all spinal-tap on me. I don’t really want to think about possibly having another condition right now, so I’m just not.

In other-yet-still-related news, I got the flu shot. I’ve never had it before, but my rheumatologist “strongly urged” and after talking to some other people in support groups, I decided just to get it done. The idea of the flu really bothers me this year for some reason, I’m not sure why this year in particular. It’s always been a worry but it jumps out at me this year. Normally I just avoid being out in public a lot during flu-season. I’m not a Black-Friday goer, I’ve lovingly dubbed it Black-Fluday, and I’ve always tried to avoid similar situations. I’m a frequent Hand-Sanitizer user when I do actually go somewhere. I avoid touching my face, wash my hands, yadda yadda. I’ve managed to stay relatively healthy in that respect, but this year it just seems like it would be especially devastating to be put in the hospital for something that may very well be avoidable.

Having said that, my arm hurts. And so does the rest of me. I felt nothing until last night, which was more than 24-hours later. I was really tired, my heart was pounding, and I was really nauseated. Not to mention the trail of muscle spasms that went up my arm and into my back and neck. I’m unfortunately on my cycle right now too, so I’m sure some of that could be attributed to that as well. I feel OK right now, aside from the arm soreness, and typical pain to which I wake up.




  1. Oh, for the flu–Elderberry wine the second you get symptoms. Med-MD just posted some studies showing it is effective in killing both A and B influenza and symptoms last about 2 days instead of the normal 6. Dosing is available with web search, I don’t have it in my head right now.

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