Tuesday, November 30, 2010

Games on facebook do not create awareness. IMO.

OK, here we go, a really hot button topic. Breast cancer awareness.
Someone on facebook sent this to me and a bunch of her other female friends:

"Someone has proposed that us, GIRLS, did something special in Facebook to help gain consciousness of Breast Cancer. Its so easy that I'd like you to join us to make it spread! Last year it was about writing the colour of the bra you were wearing in your FB status... and it left men wondering for days why did the girls have colours (apparently random) in our status. This year it has to do with our love relationships, in other words, for the moment you are going through with your relationships. What do you drink?

tequila: I'm a single woman
rum:= I'm a touch and go woman
champagne:= I'm an engaged woman
redbull:= I'm a woman in a relationship
beer:= I'm a married woman
vodka:= I'm the "other one"
sprite:= I'm a woman that can't find the right man
whiskey:= I'm a single woman but with friends that won't stop partying
liquor:= I'm a woman that wishes she was single.
gin;= I'm a woman that wants to get married

Now all you need to do is write down the answer for your situation in your FB status (don't reply this email, just put it in your status). Also, cut and paste this message and send it to all your girl-friends as a message. The Bra game reached the news. Let's make this one make it too and see how powerful women"

to which i respond:
i don't drink alcohol but i'm not single... so, seltzer.

FWIW i think breast cancer has plenty of awareness. I don't know a soul who is not aware of the existence and seriousness of breast cancer.

what breast cancer and all cancer needs, IMO, and what *all* diseases need, is for the funds to go to sick people who can't pay their bills, rather than all of it going for research that may not benefit anyone for 50 years. my 2 cents. It will probably make some people mad, but as someone who has survived brushes with death 3 times now, I think my opinion is worth at least 2 cents.

to which someone responds to me:
"Breast cancer has, for a long time, carried a stigma with it; it was the unspoken cancer because women were embarrased, ashamed. October has been named Breast Cancer Awareness month to help women be aware of their risks and not be so afraid to ask their doctors, family, and friends about the disease. Many, many women don't even know that they should have routine mammograms and numerous lives could be saved it they just knew. Carla, you must be very fortunate to know such women because research proves differently. So adding a simple word to my status is such an easy way to raise awareness and I am more than happy to participate. Just MY 2 cents. My I never have the unfortunate experience to know someone that has to fight breast cancer and may I never have to fight the disease myself. May they continue their painstaking research to find a cure to this disease. "

to which I responded:
We have a lot of cancer in my family. I lost an aunt to brain cancer. My father has to pee through a tube because of bladder cancer. My cousin has a brain tumor that he lives with. Another aunt had a spot removed from her lung. And I have a tumor on my arm. I also live with 4 autoimmune diseases, one of which has almost killed me three times with kidney failure, congestive heart failure and a stroke.

If I thought posting an alcoholic drink in my status would do anything to change any of these facts (even though they are not breast cancer, but actually other cancers and other diseases), I would put it every day, even though I can't drink alcohol.

As someone who was literally bankrupted by illness, I only wish that more effort were given towards helping sick people pay their bills right now. Once in a while there is an organization that focuses on just that. i recently performed for dance for the cure- I took a day off work and donated my performance, as I have done on a number of occasions for support groups for lupus and fibromyalgia. *All* the money from the dance for the cure event goes towards helping families of people with breast cancer. I am not at all unsympathetic. When there is an opportunity to make a real difference, I pitch in.

And FWIW there are lots of diseases out there, many of them life threatening, not just cancer and not just cancer of the breast. but for whatever reason, all the attention and money goes towards one particular disease, and almost entirely towards research. if we had universal health care i'd be OK with that, but even those with insurance are bankrupted by serious illnesses.

I am not saying don't look for a cure, or don't care. Quite the opposite. I am saying don't overlook the actual suffering people while looking for a cure.

Note that I didn't even bother to address the fact that this message was sent on Nov. 27, almost a full month after the end of October, breast cancer awareness month. I also didn't mention that if you really want to create awareness, stupid drinking and bra games trivialize and sexualize a serious illness and is just a form of slack-anthropy, a way to pretend you are helping out without actually doing anything meaningful. If you want to help prevent cancer with your facebook status, then tell everyone to eat 9 servings of fruits and vegetables a day, as recommended by the American Cancer Society. That is what I did not say, and should have. So I'm saying it now. I am not playing bra games, or drinking games, or where do you leave your purse games for cancer, or lupus, or any other disease. But I care. I blog. I sing. I perform at events, sometimes for benefits at my own expense. I donate when my friends run marathons for MS and cancer. I even stood in the rain to watch one of them complete a marathon for leukemia. I donate my "junk" to the lupus foundation pickup service. Play drinking games on facebook for fun. But don't lie to yourself and think it's creating awareness, and don't criticize me for not participating.

Comments welcome, as always.

Sunday, November 28, 2010

The Apathy of loved ones

Just found the lupus magazine, an online magazine with some great articles.
This one article on The apathy of loved ones really resonated with me. I think I know at least one person in every single category. As infuriating as it is, it's nice to know I'm not the only one who's dealt with these appalling behaviors.

Friday, November 26, 2010

Love Simple (Movie)

I just finished watching Love Simple, an indie film about an unusual love story: 2 twenty-something people in Brooklyn, NY who fall in love with each other, but then lie to each other about their lives because they are both afraid no one will accept them is they see their circumstances. Totally plausible, and something I can relate to firsthand.

Her secret, the important bit of info she is afraid to reveal to anyone she might be romantically interested in, is her diagnosis of lupus. He is also keeping secrets, but that's about all I want to reveal of the plot, because I hate it when people spoil movies.

Good acting, good casting, nice writing, nice music, and really great job of addressing these questions: exactly when do you tell someone you have a chronic illness? If you tell them the minute you meet them, they will always see you through the lens of illness. They may never get to know you at all, or well. I, for one, would rather people know me first, then find out about the illness second. But then, when do you spring this bit of info on them? The first time you meet them? 2nd? 3rd? If you wait too long, you feel like you're living a lie. When you've got a chronic illness and you're in your 20s and single, this is a biggie. You don't want to be alone, but you don't want to be a burden.

This movie may not depict exactly how tough it can be physically to live with lupus (Where is the exhaustion? Where is the joint pain? Where is the kidney failure? Where are the prednisone side effects- weight gain, moon face, and hair loss? Perhaps for the sake of keeping the movie viewable, these common problems are not addressed.)... But, it does a really nice job of addressing a lot of the emotional stuff that comes with it: people close to you abandoning you, wishing you could just be normal, wondering if you can find love- and keep it, not wanting to ruin someone else's life so you can have love.

Lupus is a disease that desperately needs more awareness, and this film is a big step in a really good direction towards getting people to realize this is a real disease, but behind the disease is a real human being, still very much worth taking the time to get to know.

Love Simple is a nice mix of humor and poignancy, one that makes you think, and it has heart, like all good indie films. Definitely worth seeing. I recommend it. It might even spark some interesting conversation afterwards with whoever you see it with.

Click here for info on how/ where to see it (at the moment, it is only available on itunes as a rental but will soon be more widely available. Portions of the proceeds of this movie go to the Alliance for lupus research):


Thursday, November 18, 2010


Big week in the news for lupus, it seems!
Benlysta, the drug created specifically for lupus, has been recommended by the panel for approval (not yet approved, but recommended).
If you've been reading my posts, you know I'm not a fan of drugs as a permanent solution to chronic illness. Taking pills indefinitely can cause as many problems as it solves. However, there are times when the disease is running so rampant that you absolutely must intervene with something, or it will kill you or cause permanent damage to your organs. And it is refreshing to see that someone out there is trying to find us something better than prednisone for those times.
So here is the announcement:

Toni Braxton has lupus

One would hope that the announcement that Toni Braxton has lupus would help bring some much-needed attention and compassion for the disease. Instead, below we get comments like this (note: Toni Braxton filed for bankruptcy with debts of $50 million- admittedly, a sum I cannot fathom, but a separate issue altogether from illness):

"No, Toni Braxton I am not giving you my hard earned money to get you out of debt. No matter how many stars you bring out or variety acts you have. Instead of shopping sprees how about going to the doctor? Lupus is NOT cancer. You can treat your symptoms and if you take care of yourself, you can live. Bet that girl from the Lion King wished she had Braxton's money. But she's dead now, from cancer not lupus."

No, lupus is not cancer. And cancer is not lupus. And cancer, for god's sake is not the only disease that deserves to be taken seriously! Why are we even bring cancer into the discussion? I'm afraid the cancer people (breast in particular) have done such a great job getting people to care about their disease that there is no compassion left for any other diseases. Infuriating.

It would be nice if one of the online articles covering Toni's lupus announcement would either tell the whole story of the bankruptcy or leave it out, because it is completely clouding the issue of lupus awareness. It is making her announcement entirely ineffective.

Wednesday, November 17, 2010

In case you didn't believe me...

... when I said I would do *anything* to get better.
Just when you think you've done it all: acupuncture, bodytalk, lympahtic massage, regular massage, physical therapy, chelation therapy, biological dentistry, craniosacral therapy, psychotherapy, bioelectronic feedback, coffee enemas, gluten-free diet, vegan diet, candida diet, no artificial sweeteners, journalling, career change... I am nothing if not willing! And most of it has made a difference.

I just had my rheumatologist appointment Monday. I was pleased to see my blood pressure is back to its old self, 90/60, with the meds, so i'm hoping now I can look towards getting off the meds. We're cutting the dose from 60mg to 30mg, and I will monitor my BP daily to make sure it stays in the normal range.

So that's great news, but what I was really annoyed by was hte fact that my inflammation (sed rate) is even higher than it was last time. it's at 84 now, which is extremely high. It's been as high as 120, but when it's that high I'm in constant pain, all over my body. Normal range is below 20. I'm on a gluten-free vegan diet now, and no MSG or artificial sweeteners, so I don't think it's my diet. It's probably my brain/ emotions/ level of stress causing me to produce too much cortisol, increasing my inflammation. SInce those things are habits that I will need help breaking (I'm working on that; reading a book about it. I will post all about that when I finish it). .. Anyway, the only quick and relatively easy (simple anyway, if not easy) radical change I can make is to go on a liquid fast for a week. I feel I really need to give my body a rest from digestion. I've got high quality allergen-free vegan food powder and rice milk. I'll keep you posted.

Thursday, November 11, 2010

Gluten-free does not have to mean flavor-free

Well, it was so nice today, I decided to eat lunch outside.
Actually, there were 2 reasons I ate outside.
1) it was nice out
2) I was getting new tires on my car and I can't stand sitting in the waiting room smelling all that rubber. It's so offensive to my senses, it must be bad for you. I used to go to a bluegrass jam session in a bicycle shop back home, and it reeked so bad of rubber I thought my sinuses were going to burst into flames. I try to be aware of what I am exposing myself to. Which brings me back to my "picnic."

I had my little beach chair, a book, and my lunch.
I've been gluten-free for a couple years now and I must confess that at first, I was not very creative with the whole gluten-free thing. I would get rice cakes, rice crackers, rice bread, and slap some hummus on them. I really like hummus, but nearly every day? Besides, that is awfully carb-heavy, all those crackers and breads. Lately, I've been making smoothies with fresh fruit, rice milk and wheatgrass powder. (even though it says "wheat"-grass, it is gluten free. confusing, but true). Packed with nutrients and fiber, and easy to digest.

Today, since I was "picnicking" I went back to hummus for the afternoon, because it is so portable. I brought some vegetable chips (beet chips, yam chips, carrot chips), a little hummus, and a couple dolmas (stuffed grape leaves), and some homemade iced green tea with stevia. Quite nice.

What book was I reading? How nice of you to ask. I'm reading The Superstress Solution, a really great book about minimizing/ undoing stressful habits, written by an MD. I checked it out from the library after getting booked for a gig where they want me to include a message about dealing with stress. I quickly realized I was fairly unqualified to talk about dealing with stress effectively! So I'm studying up. Since I have no wisdom of my own to share, I'll just read a bunch of books, add some humor, and pass along other people's wisdom.

Now what kind of tasty gluten free dinner shall I have?

-Carla Ulbrich, The Singing Patient, is a comical singer-songwriter and author of "How Can You *Not* Laugh at a Time Like This?: Reclaim Your Health with Humor, Creativity and Grit," coming out Feb. 1, 2011. www.thesingingpatient.com

Monday, November 1, 2010

Movie features lead character with lupus


Film Lands International Distribution Deal With Synergetic
NEW YORK, NY, November 1, 2010 – Your Indie Films/Synergetic Distribution has acquired worldwide distribution rights for the film Love Simple, directed by Mark von Sternberg. The film will be available for purchase internationally on Tuesday, November 9, and 10% of the proceeds of the film will benefit the world renowned Lupus Research Institute.

The DVD version of the film will be made available through several worldwide online venues including: amazon.com, bn.com (Barnes and Noble), target.com, bestbuy.com and walmart.com.

Hailed by Variety as an “engaging neighborhood pic...with genuine flair and wit,” Love Simple is a coming-of-age romance where the lead character Seta falls in love after meeting, Adam (Francisco Solorzano) in a Brooklyn Laundromat; however, both must deal with lies and personal situations in order for their relationship to survive -- he lives at home caring for his sick father, and she has suffered from lupus her entire life.

“It made sense for us to help shine a light on lupus and raise funds for this vital organization, particularly in this year that saw lupus frequently in the news with Lady Gaga announcing a borderline diagnosis, and the heart-warming story of Snoop Dog’s daughter’s battle with the disease,” states von Sternberg. “Based on the overwhelming response we’ve received from the lupus community, the film accurately shows the often misunderstood symptoms and issues associated with lupus.”

In addition to Variety, the film has received glowing reviews from nearly a dozen lupus and chronic illness bloggers (see below), and will be featured as the lead story in the November issue of The Lupus Magazine, an online, world-wide publication for the lupus community.

“Based on the positive buzz the film has generated so far, pre-sales of the film have been strong,” said Robert Rangel, of Your Indie Films/Synergetic. “We look forward to working with the Love Simple team on helping spread the word about this wonderful film, and its efforts on raising awareness and funds for lupus research.”

The Lupus Research Institute (LRI) is the world’s leading private supporter of innovative research in lupus, and champions scientific, creativity and risk-taking in the hunt for solutions to this autoimmune disease. The LRI’s research strategy and results are changing the course of lupus research and bringing new hope to people with lupus around the world.

For more information about the film, visit www.lovesimplethemovie.com, or become a fan on Facebook at www.facebook/lovesimplemovie. For more information about the Lupus Research Institute visit www.lupusresearchinstitute.org. For more information about Your Indie Films/Synergetic Distribution visit www.synergeticdistribution.com.

Reviews of the film "Love Simple":

"An engaging neighborhood pic, with genuine flair and wit. The obstacles along the central duo's rocky road to coupledom are untraditionally somber: She has lupus, he's stuck at home caring for his wheelchair-bound father." Variety

"Definitely recommended...a great film helping a great foundation." Geoff Thomas, editor, The Lupus Magazine

“The inspiring and engaging film is a realistic portrayal of a lupus patient, and will serve as an invaluable way for us to raise awareness of a disease that is a leading cause of heart attack, kidney disease, and stroke among young women.” Margaret G. Dowd, Executive Director, S.L.E. Lupus Foundation.

"This movie is sorely needed. Love Simple is a huge gift, not only for Lupus sufferers but for their families and friends, and the world. Beautifully filmed, it is the first easily accessible media piece that I have seen to actually bring real awareness to Lupus." Julia Sherred, editor, www.geekypleasures.com

"A movie whose female lead has lupus - which may be the first of its kind! Check out their website. And spread the word!" www.despitelupus.com

"I think it is very relatable for many people. It deals a lot with dating, relationships, and family difficulties that can come with Lupus. I thought it was pretty accurate in its portrayal of Lupus." www.cureforlupus.org

"I just…watched the movie "Love Simple"... I loved it...It's definitely a great lupie movie." www.livinglupie.com

"I absolutely loved the film!" Matthew Sapp, editor, mattandlupus.blogspot.com

"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor, lupuseveryday.blogspot.com