I am a patient of life, learning to live in spite of chronic illness. This is not my personal blog but occasionally I will tell you personal facts about my life. Please respect my need sometimes to maintain a distinction between the two. I am not lupus; I have lupus.

Reasons this blog exists:

May is Lupus Awareness Month. This is a way to be more involved by sharing my experiences. I'm going to get real with you and hopefully find and give some solace to others in the patient community. Anyone is welcome; you don't have to have lupus to understand the tumult of navigating a world that is dictated by your physical capabilities and unfortunately, the lack thereof.

I am also inspired by a fantastic book by Laurie Edwards, "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties." Highly recommended.

 

Had my first round of Benlysta (the newest FDA-approved drug for lupus, as of March 2011) two weeks ago! It’s an IV infusion that lasts about an hour. Completely painless save for the first needle prick. (Thankfully, I have big, awesome veins so the nurses don’t have any trouble getting all up in there.) I haven’t seen any bad side effects except for maybe being a little loopy afterwards - slurring my speech, etc. - but nothing to write home about. No benefits yet either, though. The rheumatologist said “results anywhere from 4 weeks - 4 months” so… not waiting on pins and needles but very hopeful. Apparently I’m the “ideal candidate.” And the first in this practice to receive the medication so they’re all super interested in learning how to do it and what it is/does. Pretty cool experience, for what it is. Better than others, for sure! My 2nd round is on the 31st and I will update again if there are any changes, good or bad.

Had my first round of Benlysta (the newest FDA-approved drug for lupus, as of March 2011) two weeks ago! It’s an IV infusion that lasts about an hour. Completely painless save for the first needle prick. (Thankfully, I have big, awesome veins so the nurses don’t have any trouble getting all up in there.) I haven’t seen any bad side effects except for maybe being a little loopy afterwards - slurring my speech, etc. - but nothing to write home about. No benefits yet either, though. The rheumatologist said “results anywhere from 4 weeks - 4 months” so… not waiting on pins and needles but very hopeful. Apparently I’m the “ideal candidate.” And the first in this practice to receive the medication so they’re all super interested in learning how to do it and what it is/does. Pretty cool experience, for what it is. Better than others, for sure! My 2nd round is on the 31st and I will update again if there are any changes, good or bad.

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