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!


Monday, February 22, 2010

Julian Lennon & James Scott Cook's song "Lucy" released to raise money & awareness for Lupus...

I'm so sorry to hear of Julian Lennon's loss of his dear friend Lucy Vodden who had Lupus. But at the same time I'm happy and encouraged to hear James's grandmother is still fighting the battle with Lupus 92 years later! Inspiring stuff.

This is just such an amazing song & all the proceeds raised go to the Lupus Foundation of America and the Lupus Trust in England. So PASS IT ON :) And you can help fight Lupus too!


Thoughts on being a patient...

Did you ever think about how ironic it is that we are called "patients"? When all we do is hurry up & wait around for doctors, it seems the perfect name in my opinion!

You see, the thing is - even though life has slowed down a lot for me - I get to appreciate all the moments that slip right by most of the healthy, busy, "normal" people of the world. So I try to appreciate and take note of those moments, because I feel very lucky to have them & even more lucky that I am aware enough now to NOTICE them again :)

Taking pictures in the snow, starting a rock garden full of succulents, buying a bird bath, writing a blog entry, connecting with far away friends and loved ones on FaceBook, making an amazing dinner, time spent with family & pets & friends... that's really something to be grateful for!

Oh and guess what? Even though fourteen months after being diagnosed with optic neuritis I still have it (and it's now classified as chronic optic neuritis) - I now have PERFECT VISION somehow! I bet it's the fish oil & flax & all the good supplements I take. I'd be willing to bet on it! Do you take a bunch of supplements? What do you take?

Also, what are the little things that you have learned to take joy in that take your mind off of the pain?

Stay strong, blessings & love,
ErinInTheSkyWithLupus :)