Thursday, November 18, 2010

Benlysta close to final voting day...

On December 9th they will put it to a final vote, but it looks promising that Benlysta will be the first drug specifically made for Lupus patients & our varied needs in over fifty years! That seems hard to believe, but then again not really. Sometimes it feels like I have a disease that is taboo or something because everyone is so supportive of every type of cancer there is, whereas most people don't even know what Lupus is. Doesn't that frustrate the hell out of you? It does me. It's like we've got this consuming disease & then have to try to explain to others what we are going through & I still often end up feeling judged & as if they feel my disease isn't worthy of being a cause.

I am on chemotherapy injections once weekly and have been since May. That's a lot of chemo & I still feel overlooked & like I have to prove something, but don't have the energy to most often. I just want to be able to take a shower without feeling like I've ran a marathon.

Maybe Benlysta will be for me, maybe it won't though. I have to realize that the regimen I am on now may be the one I'm supposed to stay on. But at least there will finally be a drug specifically for Lupus. At least it can help other people, even if not me. I have such high hopes for this medication. I hope it lives up to them!



  1. My health insurance was cut off recently (long story). I'm trying to apply but I've been without my meds for over a month now...and I am messed up. I've become even more depressed because of my illness and my lack of medication. It's nice to read your posts and know there is someone that understands and yes it is VERY frustrating and upsetting when no one knows or understands what lupus is.

  2. Oh, I'SNT it frustrating though?! It is such a drag to have to explain the disease - and such a complex disease - again and again. Ugho. But remember you're not alone. Hoping for a good day for you, with an even better tomorrow on your horizon! All the best, Headstrong

  3. Oh, Alex - I am SO sorry I didn't get this sooner! *HUGS* I am going to be keeping you in my thoughts & prayers big time. I hope things have gotten better since you posted this :( I just wish we could be better. I am going to keep wishing for that even if it seems impossible!!!

    Headstrong, nice to meet you. Sorry it took me a while to answer you, although I know YOU understand unfortunately! *hugs* Thank you SO much for the encouragement. Let's keep encouraging each other okay????

  4. YOU need to come see me....

  5. Erin email me at so I can invite/add you to my blog. I ended up locking it down since bots are stealing my content and reposting it. Arrrrgh.