My follow up appointment went very well on Monday with my Rheumy! Thanks to those that gave advice on what to bring to the appt and what to discuss! He sat and talked with me for half an hour. My question for you all is my doctor does not want to go the medication route yet because he thinks I am to young and my symptoms (right now thankfully!) are doing pretty good. Allot of my flares the last couple of months he believes are as a result of my abscessed tooth which as of last Wednesday is gone gone gone! His wish is for me to slowly develop a better diet, light exercises and to start taking fish oil. He hopes I can slowly reintroduce foods later on to see what I can handle and what I can't. But! I am a serious sugarholic/caffeine addict! Help!
My questions!
-What are some of your best takes on diet? He says no sugar, no bread, no lots of things! What has others found that help? taste good? Sites where I can get recipe's? Easy meals I can get for when I'm too tired to cook? My stomach isn't too sensitive though it has gotten worse over the last year.
-My husband and I have decided to purchase a Wii as we live in rainy old Washington state and well the weather makes it difficult to get out and walk very often especially during the winter. Does anyone else have the Wii fit? Do you like it? Is it easy to use? I am a gamer/nerd/geek ;D So I love video games and anything to make exercising easier would be great!
Thanks for the help!
Becky
Becky,
I have a friend whose daughter has an autoimmune kidney disease. She is in her early twenties but contracted this illness when she was about 14 y/o. The children's hospital told her that their daughter would most likely be dead in 7 years. My friend refused to put her on high powered drugs. She went the route of a gluten free, dairy free, and low sugar diet. She took fish oil and antioxidant supplements. She also bought a water filter and shower filter and lowered chemical exposure. This daughter is doing extremely well today. The doctors just say keep doing what you are doing, it is working.
I take a high dose of fish oil that was prescribed by my rheumatologist. Interestingly, I've seen two rheumatologist and neither of them recommended I go on Plaquenil. Now, I know they prescribe to others and both said they would prescribe to me if I wanted. My stomach has been very affected by Sjogrens and she said Plaquenil can be very hard on the stomach.
Anyway, I think gluten free and dairy free is a good place to start. Staying away from sugar is always good and eating lots of fruits and vegetables. I think juicing is good too. I did this for awhile but have gotten away from it and eat too much sugar. It is a habit thing. Once you get in the habit, you don't crave the bad stuff.
Hope this helps and good luck to you.
Anna
Hi Becky -
Just wanted to add my two cents about the Wii fit ?it's great! Since my SJS symptoms started earlier this year, I just have not been able to find the energy to go to the gym, out to exercise classes, etc. But the Wii is so much fun, I hardly realize I'm exercising. And if I'm in the living room while my boyfriend's using it, next thing I know I'm jumping up and playing too. The best part is the competition, just like regular video games - you're always trying to improve your time and score, unlock new games and levels, etc. And since my boyfriend and I are both using it, we try to beat each other's high scores, and compete with each other, too. I especially love the balance games and yoga - they're great for stretching achy joints and muscles, and feeling a bit more coordinated. :) And now they're starting to come out with all kinds of other exercise programs, dance games, etc. that use the same equipment, so I think it's only going to keep getting better...
It takes a little bit of getting used to the board and controls, but once you get it, it's pretty intuitive (actually leaning on the board to snowboard, swinging your fists to box, etc.), and it's really fun.
Enjoy!
Sarah
Many people do well on a gluten free diet. I'm on one as I'm gluten intolerant but even still you'd be better off. Also, I'm on the Paleo diet (caveman diet). So no grains of any kind and no dairy. Its basically meat, fruits, veggies, nuts and eggs are ok.
Hello
I am a dancer so I need to exercise every day. A couple of weeks ago
I was asleep in class and had so much pain.
But the diet has helped me very much. I still have some sleepy days
but then I can feel the energy I used to have.
I am totally decaf, dairy free, sugar free and gluten free.
I take a lot of fiber, seeds, fish oil, evening primrose oil,
antioxidants etc.
I am not desperate for anything actually. I don?t long for the things I used
to long for so much; chocolate, coffee, wine.
So be patient and your body will do without all the bad stuff.
Try to get the best green tea. You might like sencha or gyokuro tea.
Or Chinese Oulong which I love, but according to Ayur Veda oulong is not so good.
Does anyone know why?
Good luck and yes Wii is so much fun. My family broke a lamp when playing
wii-baseball together and we were sweating!! It is a good and fun workout.
Yoga is great, there are DVD:s available at amazon.com. I like Rodney yee.
Good luck, you can do it.
Ami
check out books on raw food, detox diets etc
they have great ways of cooking