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I would like to find a book to read about what's going on with me. .....but I don't have lupus. I have UCTD and Fibro. Should I still read a lupus book? And/or a fibro book?
would like to find a book
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Hi Jen
You need to forget about 'not having lupus'. There are many people with an SLE diagnosis who are no different from you. It is a technical distinction.
Lupus takes so many forms it is like many diseases under an umbrella name. To know what's going on with you, find out what your test results are. You will know what most of your symptoms are presumably but it's handy to know if urine tests have been ok for example.
For easy readable but full information about lupus & advice on living with lupus/UCTD I like New Hope for People with Lupus by
Teresa Foy DiGeronimo. Most of the addresses, organisations mentioned are US which isn't useful for UK readers but the rest is applicable to anybody anywhere. It is excellent especially on mind- body Connection and complementary therapies of all sorts, nutrition and exercise.
Dr Wallace's the Lupus Book is a mine of detailed information, more of a reference book and very dense. I don't think it's a suitable starter for most newcomers to the disease. Dr Lahita has one that's supposed to be very good but I am not familar with it. Not to forget the information articles on this site and on www.lupus.org which are an excellent introduction with enough information as many people are likely to need.
Clare
You need to forget about 'not having lupus'. There are many people with an SLE diagnosis who are no different from you. It is a technical distinction.
Lupus takes so many forms it is like many diseases under an umbrella name. To know what's going on with you, find out what your test results are. You will know what most of your symptoms are presumably but it's handy to know if urine tests have been ok for example.
For easy readable but full information about lupus & advice on living with lupus/UCTD I like New Hope for People with Lupus by
Teresa Foy DiGeronimo. Most of the addresses, organisations mentioned are US which isn't useful for UK readers but the rest is applicable to anybody anywhere. It is excellent especially on mind- body Connection and complementary therapies of all sorts, nutrition and exercise.
Dr Wallace's the Lupus Book is a mine of detailed information, more of a reference book and very dense. I don't think it's a suitable starter for most newcomers to the disease. Dr Lahita has one that's supposed to be very good but I am not familar with it. Not to forget the information articles on this site and on www.lupus.org which are an excellent introduction with enough information as many people are likely to need.
Clare
Joined
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39 Posts
Thanks for the info. I will work on the "not having" lupus thing.:lol: I guess seeing how this board is a lupus board, I didn't know if I had to be specific or not. I have come to reallize that UCTD and lupus seem very similar and I have begun to get a bit frightened since the dx -- I got the dx over the phone, but will get more info on Thursday. I still have a ton of questions about my health, so I hope I will be able to get at least some of them answered on Thursday. My husband has decided to come with me too, so that made me feel a bit more comforting. At least he can help me remember everything that is said!
I have gotten the books Lupus: A patient's guide to diagnosis, treatment, and lifestyle by Ana I. Quintero Del Rio and another book that just says Lupus in the middle (I don't remember the author as i'm at work) from our library system and I will look into the ones you suggested.
Thank you again!
I have gotten the books Lupus: A patient's guide to diagnosis, treatment, and lifestyle by Ana I. Quintero Del Rio and another book that just says Lupus in the middle (I don't remember the author as i'm at work) from our library system and I will look into the ones you suggested.
Thank you again!
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