Posted by: hockeygrl1 | May 8, 2012

“I want a new drug”

Tomorrow is day one of BenLysta (belimumab). I hear good things about this new treatment for lupus. My online (twitter) friends say it gives them more energy. Not enough to work but they are more able to do normal things.

Normal? Yes, you know, like go grocery shipping without having to take a nap after. I remember cleaning the house and it not hurting. The thing I miss most is going out with friends without spending three days recovering.

I want normal. Until you’ve lived with chronic illness you don’t know how much you lose.

Do I expect a lot out of this new treatment? Yes. I hope I’m not disappointed. I also hope that friends and family don’t expect a miracle. I still might not be well enough to take care of myself and work. Just doing day-to-day things takes so much out of me. I know…. Just don’t do them, but then I feel useless and that leads to worse depression.  I have to feel like I’m useful!!

Tomorrow is an exciting day for me.  I hope I can sleep tonight.  Funny!! Not being able to sleep because I’m excited to get and infusion. I don’t think I’ll ever say that again.

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