Mtx...

Starting back on my methotrexate injections tonight after almost eight months off of it. My joints need the relief but my mind is in knots now. Just the word CHEMO is so off putting is it not? Whenever I accidentally mention the word people just stare, not sure what to say. If you ever want to shut someone up tell them you are on chemo FYI!

We've been getting this house clean as a whistle all weekend long. Now I am exhausted & so is Chris. Uggh, what a way to START the week ehh?

Peace, Love & STRENGTH be with you all <3

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.

Lucy in the Sky with Diamonds has Lupus too...

Real `Lucy in the Sky with Diamonds' gravely ill

AP, Jun 13, 2009 9:36 am PDT

They were childhood chums. Then they drifted apart, lost touch completely, and only renewed their friendship decades later, when illness struck.

Not so unusual, really.

Except she is Lucy Vodden — the girl who was the inspiration for theBeatles' 1967 psychedelic classic "Lucy in the Sky With Diamonds" — and he is Julian Lennon, the musician son of John Lennon.

They are linked together by something that happened more than 40 years ago when Julian brought home a drawing from school and told his father, "That's Lucy in the sky with diamonds."

Just the sort of cute phrase lots of 3- or 4-year-olds produce — but not many have a father like John Lennon, who used it as a springboard for a legendary song that became a centerpiece on the landmark album "Sgt. Pepper's Lonely Hearts Club Band."

"Julian got in touch with me out of the blue, when he heard how ill I was, and he said he wanted to do something for me," said the 46-year-old Vodden, who has lupus, a chronic disease where the immune system attacks the body's own tissue.

Lennon, who lives in France, sent his old friend flowers and vouchers she could use to buy plants at a local gardening center, since working in her garden is one of the few activities she is still occasionally well enough to enjoy. More importantly, he has offered her friendship and a connection to more carefree days. They communicate mostly by text message.

"I wasn't sure at first how to approach her. I wanted at least to get a note to her," Julian Lennon told The Associated Press. "Then I heard she had a great love of gardening, and I thought I'd help with something she's passionate about, and I love gardening too. I wanted to do something to put a smile on her face."

Vodden admits she enjoys her association with the song, but doesn't particularly care for it. Perhaps that's not surprising. It was thought by many at the time, including BBC executives who banned the song, that the classic was a paean to LSD because of the initials in the title. Plus, she and Julian were 4 years old in 1967, the "Summer of Love" when "Sgt. Pepper" was released to worldwide acclaim. She missed the psychedelic era to which the song is indelibly linked.

"I don't relate to the song, to that type of song," said Vodden, described as "the girl with kaleidoscope eyes" in the lyrics. "As a teenager, I made the mistake of telling a couple of friends at school that I was the Lucy in the song and they said, 'No, it's not you, my parents said it's about drugs.' And I didn't know what LSD was at the time, so I just kept it quiet, to myself."

There's no doubt the fanciful lyrics and swirling musical effects draw heavily on the LSD experiences that were shaping Lennon's artistic output at the time — although many of the musical flourishes were provided by producer George Martin, who was not a drug user.

"The imagery in the song is partly a reflection of John's drug experiences, and partly his love of `Alice in Wonderland,'" said Steve Turner, author of "A Hard Day's Write," a book that details the origins of every Beatles song. "At the time it came out, it seemed overtly psychedelic, it sounded like some kind of trip. It was completely new at the time. To me it is very evocative of the period."

Turner said his research, including interviews with Vodden and Julian Lennon, confirm that she is the Lucy in the song. He said it was common for John Lennon to "snatch songs out of thin air" based on a simple phrase he heard on TV or an item he read in the newspapers. In this case, Turner said, it was the phrase from Julian that triggered John's imagination.

Veteran music critic Fred Schruers said Julian Lennon's reaching out to help Vodden as she fights the disease is particularly moving because of the childlike nature of the song.

"It's enormously evocative but with a tinge of poignancy," he said. "It's the lost childhood Julian had with that little Lucy and the lost innocence we had with the psychedelic era, an innocence we really cherished until it was snatched away."

Vodden was diagnosed with lupus about five years ago after suffering other serious health problems. She has been struggling extreme fatigue, joint pain, and other ailments.

"She's not given up, she's a fighter, and she has her family backing her, that's a good thing," said Angie Davidson, campaign director for St. Thomas' Lupus Trust, which funds research. "We need more people like her, more Lucys."

Davidson, who also has the disease, said it affects each person differently, typically causing exhaustion and depression. When the disease kills, she said, it does so by attacking the body's internal organs.

It has become difficult for Vodden to go out — most of her trips are to the hospital — but recently she and her husband went to a bookstore and heard the song playing over the store's music system. When they went to another shop, the song was on there as well.

"That made me giggle," she said.

FYI...

For my real life friends I've recently added & will add in the future, PLEASE realize this is my venting spot. I can say "Oh, it's just a flare and part of Lupus" when I talk to you on the phone or in person... but THIS is my place to let it all out.

So yes, I may use obscenities occasionally & maybe even be downright negative at times. But know "positive Erin" will be back & sometimes I just have to VENT!

:)

This public service announcement is over now :P Signing off.