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!

<3

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!

<3

ErinInTheSkyWithLupus

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 :)

It's just hair. It'll grow back.

Oomph.

I have no hair. Seriously. It started coming out in big clumps this week due to all the meds I'm on & I got fed up. Unfortunately being a cosmetologist I had clippers & went to town. It was highly emotional. It's so weird how much of our self esteem is attached to our hair. I hadn't ever thought about it much before. It was very freeing in a way too, though.

No more checking in the mirror to see if the bald spots are showing. No more looking at it hanging lifelessly or cleaning up my fallen hair from the floor everywhere. And it takes two seconds to "do my hair". Ha!

Just thought I'd share this milestone. I did it last night & am feeling MUCH more sane about it this morning than I did then.

It's just hair. It'll grow back. It's just hair. It'll grow back. That is today's mantra.

Let's make 75% our goal...

And a LOT has happened since I was here last. It's been a crazy two months! We've been VERY busy. We've moved into a MUCH better place (THANK GOD because our old apartment had been outgrown years ago but medical expenses had kept us there anyway). Moving takes up a LOT of time & energy & I'm honestly still AMAZED that I made it through it all :)

I've been reminded over & over about something my last physical therapist June told me. I had said something about being overwhelmed & sad that I was realizing I'd never get to 100% again. She told me "Let's make %75 our goal, then you won't be so discouraged. Honestly 100% just isn't going to happen short of a miracle. And you know I do believe in them too, though!"

She was an AMAZING PT. Absolutely amazing. She pushed me, yet gently. And we just CONNECTED. I will ALWAYS have very fond memories of our sessions & the conversations we had too. I told a friend of mine that she was not only my physical therapist but my mental therapist as well. And that was completely accurate.

I still do the exercises she taught me (okay, not EVERY day - but as many as I can & remember to do so). She was logical about healing, which I'd never really been honestly. I'd never let myself even consider 100% wasn't the goal or give myself credit for the small progresses I WAS making.

The reason I quit seeing her had NOTHING to do with us being done with our sessions. It was because June had very serious tragedy touch her life in December. Her husband (who was the swim coach of the university team in our town) was diagnosed with an inoperable brain tumor. These people had all the best resources in the world at their fingertips with their connections, yet after traveling all over the globe the diagnosis remained the same & after Richard passed away in June. Ironic that his wife's name is June?

*sigh*

I miss her & I think of her often. Her words STILL inspire me. But when such stark tragedy strikes someone it paralyzes others. Why is it so hard to reach out to those who are in dire need? Why? I don't understand it, but I know it's the truth. I know it first hand because I've had many incidences where my friends & even family just could NOT even deal with the reality of me being sick. There were MONTHS where I didn't even hear from my own younger brother because he just could not grasp the idea of me having Lupus. And I thought about him every day. I took it personally for a while when I shouldn't have, but it's SO easy to become self absorbed when you are in the midst of an illness. I've learned this lesson & how not to do this now I'm happy to say.

The point of this blog is to say this... REACH OUT!!!! Don't be afraid of saying the wrong thing. Just BEING there, making that phone call, writing an email, sending that "thinking of you" card might be the thing that keeps your friend or loved one going that day. You can never know just how much difference that one small gesture can make, but I can promise you it's HUGE.

Keep on keepin' on, SURVIVORS :)

Thunder storms...

Whenever it rains & rains, I hurt more & more. Aches all the way to the bone. Uggh, make it stop.