Reply To: Flu vaccine – do yall get one?

November 11, 2012 at 3:49 am

Thanks so much Kelly – it’s great to hear from you!     I have been doing every 2 weeks, and seemed to do pretty great with that actually.. I still had exacerbations here and there, usually after illnesses.. but there were a few times I didn’t notice ANY decline before the next infusion…. I was curious about the loading dose as well, to kind of play catch up!   I may have to ask about that!


I have thought about a port, but I get a little worried – thats in a deeper vein right?  I feel like my superficial veins are all so irritated, it worries me that “more important” veins could be irritated and I wasn;’t sure if that could cause more problems..

I have been without the burning/numbness for a few months, at least it hastn’ been bad.. but since going one month it seems back with a vengence.. It’s like im walking on a sandbag, feels so more weird than it used to!


I feel like my veins need a break so badly, but obviously with this trial of going longer (granted, i was SICK with that GI bug, and taking care of sick kids= stress).. I don’t know that I will get a flu shot again.. but I think I feared getting the flu since I feel like illness really sets me back, and especially respiratory illnessess..

Kelly= that is great to hear she is getting it more infrequently!!! So exciting!!! 🙂