The Benlysta Blues




Jingle Bell Run

As I’m writing this it’s Black Friday. No, I’m not out there with the hordes of other bargain hunters. I’m not even shopping online. For me it’s a Benlysta Friday. What’s that? Well, it’s the first drug that was developed specifically to fight lupus. I’ve lived with lupus as you know for many years and gone through many different drugs to keep it under control. But when they stop working and you start running out of the usual options, there is this. It’s called immunotherapy; the definition of which is “the treatment of disease by activating or suppressing the immune system.” It’s being used for cancer patients as well, So, while it’s working to help suppress some of the symptoms of lupus it’s shutting down my immune system. Quite the tradeoff, isn’t it. The one side effect I can count on after being on Benlysta is the fatigue that hits me within 48 hours. It’s the shaky-leg kind that scared me when I had the first loading dose back in February. It’s not as bad now but when it hits I’ve learned to just let go, get my rest and be happy when it’s over in a day or so. There are many other side effects and just reading them is very sobering. But it’s my life – for now. Lupus in just one of the more than one hundred forms of arthritis which is why I lend my support to the work of the Arthritis Foundation. With every dollar we raise we are that much closer to a cure for one of those. And do we need to have a little fun while we do all that work, right? The Jingle Bell Run is coming up soon on Saturday, December 1st at Steinbrenner Field in Tampa. It’s a day we celebrate our individual achievements. For some it’s just showing up. I’ve met so many incredible people that have motivated and inspired me and made me feel like I’m never alone even when I’m feeling my lowest. I’d like for you to meet some of them, like our adult honoree Jeremy David. It’s as easy as clicking right here for more information and just coming by that morning to say hello. I’d love to say hello to you and hear your story. We are never alone when we have each other and the work of the Arthritis Foundation. See you soon and please, when you need help and information visit the Foundation’s website.

This is a two-blogger; please check Ann Kelly’s Kitchen for more on my new nutritionist and how I’m changing my diet. It’s a big step in a new and successful direction.


JIngle Bell Run

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