View Full Version : Looking for info
02-27-2009, 10:12 PM
I was recently diagnosed with lupus based on two sets of positive ANA and double stranded DNA tests along with severe joint pain, anemia, dry eyes, etc. Eight years ago I was diagnosed with crohn's disease, so I am used to the song and dance of chronic illness. What I am not used to is only knowing the surface facts that seem to be in the first 800 hits on the internet. Does anyone know some really good (and not depressing sources) that delve deeper into the medical jargon of the disease? Education is my coping mechanism :) I'm 25. The things I've been reading online have started to make me feel a little anxious for my quality of life in the next 10 years, and I need to start getting a strong handle on what I'm dealing with.
One more side question: I've been feeling constantly out of breath, especially when I lie down, which I think is associated the anemia. I notice it much more when I stop taking my iron supplements. Does this sound familiar to anyone?
sick n tired
02-27-2009, 10:43 PM
The breathlessness rings a bell with me. I am dealing with that right now. The doc thinks it may be due to the cardiac effusion that I am dealing with right now but I have been going to many "ologists" to find out what the matter is.
I quite agree with you...my thoughts are that knowledge is power. It might not take away the facts about the disease, but I want to know all about it. I recently bought a book by Robert G LaHita. It is entitled: Women and Autoimmune Disease...he goes through many diseases and it is so informative and well written. I also like the book Living with Lupus by Blau and Shultz...that and The First Year of Lupus were the first two books that I looked at. I have recently been having some more problems pop up and have gone back to these books.
Education is also the way that I cope...we sound much alike in that aspect.
Oh I forgot to say Hi....so Hi Rosebud it is a pleasure to make your acquaintance. :-) I am hoping tonight when you go to bed you will be able to breath normally.
02-28-2009, 11:39 AM
Hi, I am also a Lupus newbie! A book that was recommended to me is The Lupus Book by Daniel J. Wallace. Education is my coping mechanism too and this is the first book I have found that goes into the depth that I was looking for. It really gets into the "hows" and "whys", not just the surface stuff.
03-01-2009, 06:37 PM
i think most of us deal with the breating issues. Lying down seems to aggravate it, and can be quite scary.
as far as research....when i first began, i was looking for that little star light that showed some new innovative treatment approach.....i was looking for something different from the norm. I was willing to go anywhere that seemed promising. If you find it, let me know. I could not find anything.....that was quite a slap of reality. I now spend my time trying to educate myself on how to best approach this life with the options available. I wish my response to you could be different.
this is why our forum is so important....there is a lot of experience here, and there is a tremendous amount of compassion and understanding.
03-02-2009, 03:24 PM
Since Lupus is such a complicated disorder that does not affect any two persons the same way, it is difficult to find any information that will be comprehensive. The disease does not lend itself to linear research methods or to straight forward treatment milieus. Each case is uinque, each response to treatment is unique, and each presentation of the disease is unique.
You are doing the absolute correct thing by learning as much as you possibly can about Lupus. At the same time, you will have to apply your knowledge to your own set of circumstances and remain aware of the fact that what might work for one Lupus patient may do nothing at all for you and, conversely, what failed to bring relief to one Lupus patient may make you free of most symptoms.
Other members have already mentioned some of the best books out there about Lupus. Perhaps reading them will provide you with more of the concise information that you are looking for.
Otherwise, the members here are extremely informative and willing to help you as much as they can.
Peace and Blessings
03-04-2009, 05:07 PM
I appreciate everyone's responses. It's all very helpful. I'm very glad to have found this forum - it seems like talking to fellow "patients" is often more enlightening than talking to my doctors.
Saysusie - I like your Alex Haley quote :) It's pinned up on my wall at work.
03-04-2009, 05:13 PM
hey first off all welcome to the forum...
I have Ulcerative colitis myself and SLE.. (27)
as for the info u are looking for.... well.... like been said before there is a lot of info but scattered all over the net keep looking tho lol U will find it.... :D
I am doing a lot of research myself at the moment putting it all together in 1 place.... Will share it when I get it together.... :D
and yeh I find talking on forums and interacting with other patients much more effective than most doctors lol