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.
http://www.thelupusmagazine.com/y-kim-nault.html
Sunday, November 28, 2010
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):
http://www.lovesimplethemovie.com/
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):
http://www.lovesimplethemovie.com/
Thursday, November 18, 2010
Benlysta
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
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
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.
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