new to this
Ok so first off I want to say that I do not have lupus, my girlfriend does. She tried to hide it from me at first, but now that it is out in the open she is doing better and has been takeing her meds. The hospital here is horrible and we are moveing at the end of the summer so she can get better care and be in a warmer climate. I am not very farmiliar with lupus and have been trying to find out as much information as I can. I have done a bit of research on sites like lupus.org, etc but have a feeling their is more to be learned than can be from a website. I realize every case can be very different and am having trouble finding out what would be best for her. Thank you for any help or advise.
Welcome to the Forum! I'm really glad that you found us!
Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you!
Thanks! I have a feeling I am going to need all the help I can get.
Hi Nizzmo :lol:
Welcome to our family. You are correct - one of the most baffling things about Lupus is the fact that it does not affect each person in the same way and the symptoms come and go (relapse/remission).
You are doing one of the best things that you can do for her; learning as much as you can about Lupus, its various symptoms, treatments and medications. Also, be aware of the fact that most of us with Lupus also suffer from other illnesses such as: Fibromyalgia, Raynaud's Syndrome, pleurisy, pericarditis, nephritis, to name a few. I am truly NOT trying to scare you, I just want you to know that she may have symptoms that you are not quite able to put a finger on and that they may be a result of some of these other illnesses. There are treatments and medications for every aspect of Lupus and these other illnesses. It can be quite overwhelming, but we will help both you and your girlfriend to navigate through everything, as much as we can.
One thing that I want to say is that you can come here at any time with any question about any symptom or medication or treatment and we will always do our very best to answer your questions and provide you with information. I am very happy that you found us and please know that neither you nore she are alone!!
Peace and Blessings
Thanks, I think we have a long road ahead of us, but will do the best we can. I realise their are many other issues that are associated with lupus and am prepaired to do what it takes. Are their specific hospitals that are better than others? I am from Florida and know the health system is better their, but am willing to go somewhere else so she can get better treatment. The hospital here is horrible! We are planning on moveing to get back to the beach and so she can get some better care. I know some people with lupus are sensitive to the sun, but it makes a huge difference in her mood when she is out in the sun. Is this something that can change over time?
Unfortunately for many people with lupus, exposure to UV light can make the symptoms worse, and lead to a flare of the disease. So most doctors recommend avoiding much UV light exposure, which included being out in the sun, or indoor tanning beds. Sunscreen, long sleeves, and hats are part of the daily routine for most people with lupus. Some people are not photosensitive when first diagnosed, but that can change with no warning, and the sun exposure that a person can tolerate can vary with the course of the disease.
Welcome. I am new too but I admire you stepping up and seeking help for your girlfriend. That says alot! You can also get alot of info from the Lupus foundation website, they are pretty informative.