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:
http://www.youtube.com/watch?v=gz6u4ethB6o
Thursday, November 18, 2010
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.
"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.
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
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
ROMANTIC COMEDY LOVE SIMPLE TO DONATE 10% OF DVD PROCEEDS TO LUPUS RESEARCH INSTITUTE
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
###
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
###
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