Today I spoke/ sang for a support group at the SLE Foundation in NY City. What a great group of people.
Lots of great energy and ideas bouncing around, and I was heartened and inspired by the open-mindedness, strength, willingness and ease of communication. Right near Penn Station, too- really easy to get to!
I've mentioned this before, but I'll mention it again. Support groups for lupus have come a long, long way in 20 years. When I first became ill with lupus, support groups had 2 allowed topics: prednisone and lawyers. Any talk of alternative medicine or emotional stuff was shut down. So happy to say that is no longer the case. I watched today as a patient brought up her concerns about cellcept and placquenil to the rest of us, and we were all able to inform her of our experiences, helping to ease some of her anxiety and sort things out so she could make a decision. Beautiful.
From their wall (if this were a bumper sticker, it would be like "baby on board!"):
Typically when I talk, I tell my story and how humor, creativity, alternative medicine and diet helped me get my health back. When speaking to this group today, the focus was really about how I got to be in a drug-free remission, with all my hair and enough energy to do what I want to do in life. And we talked a LOT about diet. People interjected with comments and questions, which was great- I love an interactive dialogue, versus a monologue (90% of my gigs are a "performance" and all the audience does is clap and occasionally sing along when invited to do so). I learn things too. (For example, I did not know that 1/3 of lupus patients have RA and 1/3 of RA patients have lupus. Explains why the "purple jewelry" charm bracelet I have has both an RA blue ribbon and a purple lupus ribbon).
I was surprised how very interested- not just receptive, but really interested- these patients were in hearing about diet. And that is what we talked about most.
There are 2 diets I've seen out there which both claim to heal/ help/ even cure lupus patients:
Paleo Diet ("caveman" diet that is meat and veggies- and lots of raw food)
Lowfat Raw Vegan (no meat! but all raw food, both fruits and veggies).
Seems confusing- all meat, no meat- what's better?
Perhaps a better question is: what do these 2 effective anti-lupus diets have in common? And from what I can tell, it's a lack of dairy and a lack of grains, particularly gluten. This diet is known as the GFCF diet (gluten free, casein free- a.k.a. dairy free) and has been used effectively with numerous autoimmune diseases and autism.
My hope and dream in going to speak to lupus (and MS and myositis and RA) patients is to one day hear back from some of them that they tried a GFCF diet, and it helped to reduce or eliminate symptoms, and helped them to reduce or eliminate their need for immune suppressants. And for those who have trouble learnign this diet on their own, I offer reduced rates for patients as a health coach, where I also support and educate people so they can relearn to eat in this somewhat counter-cultural way. It isn't easy at first, but it gets easier after you adjust. And even when it's at its hardest, it's easier than being on prednisone. I have my life back. My desire is to give this gift to others suffering from lupus.
If you or someone you know would like to have a free one-hour health consultation with me, whether it's about gluten-free or not- anyone who wants to achieve their health goals, big or small- please e mail me at healthcoach@bestpossibleme.com .
On another post I'll talk again (I have before) about the other 2 bugaboos I eliminated:
MSG and nutrasweet. Happy trails 'til next posting~
Carla Ubrich, The Singing Patient
Lots of great energy and ideas bouncing around, and I was heartened and inspired by the open-mindedness, strength, willingness and ease of communication. Right near Penn Station, too- really easy to get to!
I've mentioned this before, but I'll mention it again. Support groups for lupus have come a long, long way in 20 years. When I first became ill with lupus, support groups had 2 allowed topics: prednisone and lawyers. Any talk of alternative medicine or emotional stuff was shut down. So happy to say that is no longer the case. I watched today as a patient brought up her concerns about cellcept and placquenil to the rest of us, and we were all able to inform her of our experiences, helping to ease some of her anxiety and sort things out so she could make a decision. Beautiful.
From their wall (if this were a bumper sticker, it would be like "baby on board!"):
Typically when I talk, I tell my story and how humor, creativity, alternative medicine and diet helped me get my health back. When speaking to this group today, the focus was really about how I got to be in a drug-free remission, with all my hair and enough energy to do what I want to do in life. And we talked a LOT about diet. People interjected with comments and questions, which was great- I love an interactive dialogue, versus a monologue (90% of my gigs are a "performance" and all the audience does is clap and occasionally sing along when invited to do so). I learn things too. (For example, I did not know that 1/3 of lupus patients have RA and 1/3 of RA patients have lupus. Explains why the "purple jewelry" charm bracelet I have has both an RA blue ribbon and a purple lupus ribbon).
I was surprised how very interested- not just receptive, but really interested- these patients were in hearing about diet. And that is what we talked about most.
There are 2 diets I've seen out there which both claim to heal/ help/ even cure lupus patients:
Paleo Diet ("caveman" diet that is meat and veggies- and lots of raw food)
Lowfat Raw Vegan (no meat! but all raw food, both fruits and veggies).
Seems confusing- all meat, no meat- what's better?
Perhaps a better question is: what do these 2 effective anti-lupus diets have in common? And from what I can tell, it's a lack of dairy and a lack of grains, particularly gluten. This diet is known as the GFCF diet (gluten free, casein free- a.k.a. dairy free) and has been used effectively with numerous autoimmune diseases and autism.
My hope and dream in going to speak to lupus (and MS and myositis and RA) patients is to one day hear back from some of them that they tried a GFCF diet, and it helped to reduce or eliminate symptoms, and helped them to reduce or eliminate their need for immune suppressants. And for those who have trouble learnign this diet on their own, I offer reduced rates for patients as a health coach, where I also support and educate people so they can relearn to eat in this somewhat counter-cultural way. It isn't easy at first, but it gets easier after you adjust. And even when it's at its hardest, it's easier than being on prednisone. I have my life back. My desire is to give this gift to others suffering from lupus.
If you or someone you know would like to have a free one-hour health consultation with me, whether it's about gluten-free or not- anyone who wants to achieve their health goals, big or small- please e mail me at healthcoach@bestpossibleme.com .
On another post I'll talk again (I have before) about the other 2 bugaboos I eliminated:
MSG and nutrasweet. Happy trails 'til next posting~
Carla Ubrich, The Singing Patient
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich- funny medical songs
get the book! http://tinyurl.com/348hroc
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