Hi missfearless and everyone! This is my first post here.
I was diagnosed with stage 4 lupus nephritis when I was 12 so been living with it so far for about 7 years now and definitely had my ups and downs. Currently, my doctors say I am in 'remission' or rather it is stable at the moment. In response to your question about diet.. there is no proven right foods that you ought to eat to 'cure' lupus. Since, i'm told there is no cure. I have had varied opinions on what I can eat or not eat. A doctor even said I could eat anything after when I was heading to remission. Mum always says doctors aren't gods which is true. However, it doesnt mean you dont listen to them either. The main thing is to take all the medication but obviously you dont want the side effects. So, I guess whatever I wanted to try with my diet in the past, I always checked with the doctor to make sure its compatible with the medication i am on -the safest way is to go all natural even with vitamins. So, diet will probably be different for everyone, but i've always tried to maintain a healthy balanced diet. Of course, reduction of salt intake, lots and lots of water, lots of fruit and vege, I have a lot of gluten-free foods because personally I find wheat makes my stomach bloated (thats different with everyone). So, listen to what your body tells you.
It's not just diet though, exercise plays such a large role which was constantly emphasised especially when I can be a bit of stress-head. So I exercise daily to thepoint its become a routine overtime.
Hope that helps. I am currently taking 2000mg of mycophenolate twice daily. I have been on immuran and prednisone and other steroids at one point but that was reduced gradually.
Please remember that the Lupus association recommends a balanced diet is required for LUPUS patients. Some doctors may suggest different diets for different patients but as far as we are concerned here, there is no diet or alternative medicine that is suggested. It is wonderful that you pointed out that you checked with your doctor before trying any diet! That is exactly how we have to do it.
Originally Posted by mel_cat
Part of the balanced diet is, as mentioned above, exercise. The amount and types of exercise need to be discussed with your doctors depending on what type of damage has occurred in your body (knees etc).
We are really glad that you have decided to join us here at WHL! Please make yourself at home. Look around through old posts or start new ones of your own. You will find a wonderful group of caring people and many of them around your age! We are all here for you
To other newer members of the forum I am going to post a link to something very important to us at WHL. The story will explain what happened to make our wonderful founder start our online family. This is one of the most important things that we all should know about our posts here
How to get banned from WHL
welcome to a caring buch of people.
i call them my cyber family, because we try to encourage each other so much.
it is a great place to let you know you are not alone.
Sometimes I think people are a bit too sensitive to this rule and see it being broken or about to be broken when it really really isn't. I would hope that we are open to discuss things such as diet and using our own common sense to decide what is best for our own bodies based on our own experience and our doctors instruction. No one implied that a diet was a cure for lupus, they even went so far as to explain that no diet was a cure for lupus.
Originally Posted by tgal
Food intake... i.e. diet... is the most important factor to a human beings health, without food our bodies have no fuel, we starve and we die. I think we should be able to openly discuss diet without automatically being seen to be promoting either not taking medications or promoting a cure. At the moment I can't eat food, but I am afraid to discuss it on this forum because the second I start to talk about a diet for my condition Im going to get people thinking I am promoting some kind of cure for lupus. But I really do want to talk to others who have gastroparesis about what foods work for them.
Originally Posted by giggle
A moderator making sure brand new members are aware of the rules laid down by forum management is a way of avoiding breaches of the Membership Agreement, and problems in the future.
As an established member with many posts and threads, no member of the Mod team or management is going to think you are promoting any sort of fad diet/fraudulent product by creating a thread about Gastroparesis, and what sort of foods or diet could help with this condition.
There have been many situations in the past where people have signed up here and have been unclear as to their reason for being here. Some, like to "beat around the bush" at first to see if this is a place where they could advertise or push a fraudulent product. As a result, we have to be up front and vigilant about the rules pertaining to the promotion of these products.
If anyone actually breaks the rule a private discussion and possibly, an infraction, will be discussed/given. That was not and has not been the case. Since the "diet" threads are the ones that usually end up in a place where the food discussions turn into the food as a cure/remission it is just important that new people know the rules behind it.
You posted about your eating issues and not one word was said so I in no way understand your concern now. Talking about what food does to an individual body is not an issue and no issue was taken with the post above but it was a good place to post the rule because many new people are here who do not know how strictly we adhere to discussions about food or alternative meds being ways to "fix" our Lupus. When a diet thread starts getting popular it just makes things easier on all of us to post the reminder.
I will gladly apologize when I feel that I have done something that I should not have but in this instance it was simply posted as informational to those that did not know. That is part of my job and it is what I have to do
Sorry Rob & Tgal I made a booboo that has lead me to be misunderstood : )
I replied to your post tgal but I read through the entire thread and not just your post. It was in response to the entire thread, I should have cut your quote out and just used the link... I was being lazy by quoting you for the link and forgot to snip out your post!
As you can see from the beginning people were assuming it was a thread about a cure diet and that the OP wasn't taking their medication.
Sorry, it wasn't aimed specifically at you tgal. : ) When I said 'people are a bit too sensitive' I meant people in general, not the sarcastic/passive aggressive version of pointing at one person in particular and saying 'people'.
I also made that thread about gastroparesis after I made a post in this thread. I merely decided I should do it anyway because it was a harmless post and no one could have anything against it and if they did I wouldn't let it get to me.