Friday, March 9, 2012

Benlysta'd at Last!


My nurse was rather amused by my request for a photo, but as she said, "Let's hope this photo is a turning point in your life!" I received my first Benlysta infusion today. The whole process took about three hours... and involved benadryl. It makes total sense that they would give benadryl to make sure that the patient doesn't react poorly to the drug. It would also have made total sense to warn the patient (who had to drink a lot of caffeine to be able to drive home safely afterwards) ahead of time. I've been asleep most of the day since then, but I don't know if that has to do with a side-effect of the drug, the benadryl, or some combination of the two (I'd imagine it's the latter).

Other than that minor thing, I have no complaints. The infusion nurse was great, and the only other person receiving a infusion was within a year of my age, so it wasn't one of those awkward "I'm three decades too young to be here!" moments. Also, I have to say that a Kindle Fire is the best hospital toy ever. I could block out all the other noises, read books, read the BBC news, listen to nature documentaries...let's just say I was having a "sleepy chipmunk on crack trying to stay awake" attention span because of the benadryl. But to the person who sent me the Fire, and you know who you are, thank you, once again. Best toy for hospitals ever!

Edit: cute comment from the (not at all overweight) nurse: "When you stand up I want to look at you, because when I moved to VT I was your height and weight, and I want to remember what that looks like."


Edit #2: I just realized that I received my first infusion of Benlysta exactly one year after it was approved. So happy Benlysta day!



7 comments:

  1. You look adorable! And my thanks to the Kindle Fire sender.

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    1. Thanks! I went for the lupus awareness look: purple sweater, purple scarf (even though I know redheads aren't supposed to wear light purple), and Cure4Lupus.org's purple ribbon/butterfly earrings. I appreciated that my infusion nurse had purple scrubs on and was wearing a butterfly-themed watch. Clearly she gets it. Sadly, she's retiring. Luckily, she's not retiring until I'm leaving anyway!

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  2. I also am impressed with your smile and how cute you managed to look in spite of all of the garbage going on in the background of your life. I really hope that this will be the start of a wonderful new life for you as your symptoms are controlled by this new drug. And I'm glad you have plenty of good books to read while you're there.

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    1. Well, when a nurse with a needle says smile, who is going to disobey? :) And yes, I'm so lucky to have the ability to bring my books, music, and nerdy documentaries with me for the three hour wait!

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  3. Happy Benlysta Day!! And hurray for high-tech toys to make it less boring. I am totally impressed with your smile and good humor. And I don't see your hair-color clashing with the themed attire at all. However, I might be biased. My motorcycle is painted purple with iridescent butterflies. Goes with everything.

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  4. And what a perfect way to celebrate Benlysta Day! I really would have no excuse for not smiling. I'm getting the best possible treatment for lupus, a friend sent me a kindle fire, another friend sent me Dragon Dictate so that I can still blog even before my wrists are operated on, and I got accepted into both of my top choice masters of public health programs. Weighed against all that, a couple of chronic, painful and incurable diseases aren't all that bad...well, as long as I have enough medication to keep me feeling human. :) Antinausea drugs and the like are my friends!

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  5. Well, at least you still have a smile on your face and a positive outlook. That's half the battle.

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