PDA

View Full Version : New to lupus



JMGuillemette
10-26-2006, 11:26 AM
Hi everyone,

My name is Jamie and my girlfriend has lupus.

We have been with each other now for 1.5 years. She moved in with me just this past may (~6months ago) .. in the last 4 months her symptoms have really started to show (big flare up). after serveral trips to doctors she was diagnosed with Mixed Connected Tissue Disorder / lupus only a month ago.

Since then she has been getting worse and worse each week.

Im here to find out more about people living with the desease.. and to get some support my self.

MARYCAIN
10-26-2006, 12:43 PM
It's good that you're making this effort to understand your girlfriend's illness - that shows a real commitment on your part.

Living with a chronic disease can be hard for the patient and her family - sometimes it takes adjustments on both sides. If your girlfriend has just started treatment, unfortunately it may take a while for the medications to start helping. Your love and support will go a long way toward getting her through this. This road may be hard for you both, but it's good you're walkiing it together. If there is any specific type of information you need, you can post questions in the various topic forums, and all of us will do our best to respond.

sheena
10-26-2006, 06:38 PM
:cry: i'm new here as well. i'm glad i read your post. it's very wonderful that you want to take care of her and understand. it's so important for us lupies to have that support. if it wasn't for my fiance sticking around and helping me..i don't think i'd have the strength to keep going. it -is- really hard in the beginning. and like Mary says, the meds will take a while to take hold and help. you just have to take it slow and support her as much you can. i really wish you and your girlfriend well. you are in my prayers.

lwbale
11-29-2006, 11:15 AM
hi jamie:

I must say, good for you for taking an active interest in understanding lupus. There aren't many people who are willing to educate themselves for the sake of someone else, until its usually too late.

My mother died of lupus a little over a year ago, and while I'm not trying to cast a negative light, she was getting on in years and we had been expecting it for quite a while - she also had a few other ailments that didn't help. One thing that I would like to share about my mother's life though, she was 74 before she died, so she led quite a long life before it finally took its toll on her. But she had been diagnosed with lupus in the late 80's or so, though I remember her saying she's had recurring symptoms since she was a teenager.

In her case, symptoms would really flare up, sometimes for months at a time, but then they would subside and she'd be ok for years. Her biggest symptoms were extreme fatigue, and skin rashes. She also used to tell me, for at least the past few years, that sunlight really made her skin itchy, but she would usually use a variety of natural creams to help relieve the irritation.

About four years ago, my sister was also diagnosed with lupus, which led us to wonder about heredity. From what we've learned, a parent with lupus only has the potential to increase the tendancy toward lupus in a child by 10% or less. I have 3 other siblings, 5 kids in all, and we all were worried about passing it on to our children, and being prepared if that were to happen. it seems, to me though, that heredity isn't as big of a factor, but no one really seems to provide a definite answer on this for me yet. I have three kids of my own and wory about their health as well.

I appreciate your post very much - my brother and I are the only two people in the family that really use the internet much, so I'm trying to learn as much as i can for the sake of my sister and the rest of my family. It's nice to see other people trying to learn for the sake of their own families as well.

Whitney Murphy
11-29-2006, 09:03 PM
Hi Jamie-
Thats awesome that you're trying to find out information about the disease. How are you taking it? I just found out not even a month ago that I have SLE, to tell you how someone who just found out feels! It's scary, it feels like you just lost control of your life (well thats how I felt, :mad: ) esp. when you start reading stuff about the disease, no one on either side of my family has ever had SLE or any form of lupus so I had no idea how to deal with it. Just remember that in the beginning of the meds esp if they put her on steriods she'll have mood swings, she'll probably get emotional. As long as you are there to support her she'll feel a lot better. People in the forum are willing to answer any of your questions, they were a lot of help for me, I think I probably would of went crazy without them. A lot of them do a lot of research on the meds and stuff that we take so if you're not sure about anything, don't be afraid to ask!