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Thread: girlfriend has lupus

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    Default girlfriend has lupus

    My girlfriend was recently diagnosed with lupus, i believe it is SLE, although they are still waiting to figure out the exact type. I haven't been dating her for too long, but i am committed to helping her in anyway i can, even though there isnt much i can do. Two nights ago, we went to a party, she is struggling with the fact that she wont be able to drink ever, and she thought it would be ok, but she had two beers and i had to bring her back. Later on she experienced seizure like hand movements while we were asleep and i got really nervous, but she told me she felt it coming on.

    She hasnt started treatments or medications, (she will on the 13th) but im just wondering what can i expect in the future? will her flares be few and far between? She has lots of mood swings along with these, but im also thinking those might have something to do with the fact that this is all still new to her. Right now i am totally with her but i am afraid after awhile it might begin to affect me. I can't be constantly worrying and i have other things to focus on. If it helps, she is 18 and i am 20. dont dismiss us becuase of our age, it is a very mature relationship and i feel like i would get more serious responses in here then in the teen section.

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    Hello -

    I just wanted to welcome you. It is very kind of you to be so supportive of your girlfriend. Please take some time to review the posts in the other forums at this site. You will find a tremendous amount of information regarding lupus symptoms and other autoimmune conditions. It might be helpful for your girlfriend to visit this site as well. It will do her some good to know there are others out there who are willing to lend a supportive ear.

    Try not to panic. Knowledge truly is power. You will find the members here to be very helpful as you learn about the challenges you may be facing. You will also hear from people, such as myself, who are living a full and happy life, despite these conditions. Being a member of a forum like this does wonders for one's mental well-being.

    Best of luck to you.

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    My wife and I met in our twenties as well. We found out she had Lupus within our first two years of marriage. After 13 years together we are still battling and fighting the good fight. I will tell you that you as a future boyfriend or possible spouse will need to prepare yourself financially, emotionally and spiritually. It is a long road and one that you will need to dig deep in your heart to decide if your love for her is strong enough to withstand this test. Like Pearl posted knowledge is power. Learn as much as you can about the disease. Good luck to you

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    Default What to Expect.

    ... in the easiest answer: everything.

    Lupus is such an individual disease. It affects each person differently.

    The best advice I can give to you is to take things a day at a time. Trying to do anything more than that and you are setting yourself up for a fall.

    Lupus is a strange disease in that regard.

    One day, she could be feeling fine and the next crying herself to sleep in bed. It's not an easy path to travel, in all honesty.

    The medications... Usually they prescribe Prednisone (the steroid) and that comes with it's own bag of side effects. Elevated blood sugar levels, a more round and "swollen" face (call the moon face effect), and if she is on long-term use of Prednisone, watch for ANY side effects (it can cause some nasty ones...)

    Other medications are discussed in length in the forums.

    Always remember that check-ups are MANDATORY for someone suffering Lupus. It will allow the doctors to monitor how the medications are working or correct any complications that may have arisen.

    Knowledge truly is power. Read EVERYTHING that you can on it. I spend hours doing research so I can be a better support for my fiancee and understand the complications that the disease can have not only on her but on our relationship.

    It's not an easy path but when faced directly, it can enrich love in a way that is comparable to none.

    You also have to remember that there will be moments when she will be in pain. Pain like you and I could never understand. She may cry herself to sleep or lose her temper frequently out of sheer frustration, fear, and the complications from the Lupus.

    Always try to find a good support group (for both you AND her). This forum has given me hope I never though possible, just being able to talk with them, vent to them, cry with them and question... it has been such a HUGE comfort for me.

    I wish you all the best and feel free to message me if you want.
    My art heals me and gives me a chance to give back... I donate a part of all proceeds of my sold art to Lupus research.
    http://www.freewebs.com/strange-circus

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    Default Hello

    Hello Carryonplease:

    I'm a lupie..as we are called. My fiance of 2 years, couldn't deal with my diagnosis and so the relationship ended last summer. Some people choose not to be supportive or become educated about this awful and dreadful disease. You taking the steps necessary to find information, support and become educated is amazing and I admire that quality within you and so will your girlfriend.

    Lupus is soooo much an individual disease. Thus a main reason doctors have a hard time diagnosing it and treating it. I was diagnosed 5-7 years too late. Everyday is a battle, everyday is a new challenge, and everyday is what we choose to make it. Life won't be "normal" ever again. You'll find a new "normal" within the ranges in which her body can handle, and be comfortable. One of the most important things you can do is to be a steadfast supporter of her, encourage her, love her, and be there for her. There are going to be days of pain and frustration, and days of totally awesome joy and accomplishment. Things you may not understand, and that may seem minute to you, will be huge to her. Remember that, and praise her.

    You are a great individual for sticking it out and helping her to fight the good fight, and you deserve a medal of honor.

    Best of luck to you and your girlfriend, and remember we're all here and in this together...we're all fighting the same fight.

    Robin
    Robin Lynn Byler
    Live, Laugh and Learn....you never know which one someone else is going to benefit from....!
    Newalla, Oklahoma
    robin.byler@hotmail.com

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    Carrieonplease,

    Welcome to the forum, both you and your girlfriend. I applaud you for reaching out to help her and you standing by her side and being so supportive.

    Yes, there are times when the road is bumpy and there are times when there is smooth pavement and of course there are those in between times. She will need lots of love and support, for that matter both of you.

    We have some other loves ones on the forum and hopefully they will chime in and offer some words of encouragment.

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    I also applaud because i really think it is important to have someone who will support her during this disease. I think you are doing a great job...

    I know how it's like and i'm also very gratefull having a caring boyfriend myself!

    Also, i truly believe the age you are in can be serious indeed! I'm 20 now and my relationship is also very serious.

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    I too am 20 and like to think of myself as a caring partner

    Sometimes a few of the things my gf says worry me. Like how she can't cope with life and that she's never going to beat it so whats the point. I just feel a little helpless sometimes. Sometimes she talks as though she wants to give up on life.

    She was only diagnosed a week ago though so will she get stronger as weeks pass? is there anything i can do?

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    Hi Fletchie,
    Your companion just recently got diagnosed. She is having a hard time with dealing with the fact that there is no cure and that is a very frightening thing to deal with. I have had Lupus (SLE) for about 44 years. When I was first diagnosed, I had had the disease for years years already. It was still a shock to realize that there is no cure and yes I thought the situation was hopeless too. In time when her medications start working and she learns to adjust to her life with this illness she should do better. Remember though that she will always have good days and bad days as there is no cure as of yet. Maybe you two could get some counseling to help to deal with this. I guess all you can do is stand by her and let her lean on you. I wish you and her the best and hope that she gets to feeling better.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  10. #10
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Carryonplease,

    I'm Rob, and I was diagnosed with SLE five years ago. I'm also a moderator here, and I usually recommend that teens not only post in the teen area, but also in the "Lauri's Lounge" and "New Members" areas, as they recieve the most traffic, and yield the most responses. So you are in the right place.

    My parents are now both 72 years old, and they met, and married when they were both 18 years old. Love is love regardless of age, and I take your relationship very seriously. Your support for your girlfriend, is a great thing. Lupus, can be an incredibly lonely, desolate thing to live with. Finding one person who is willing to understand, and willing to stick with you through the bad days and the good days, is a rare thing. I know you are both dealing with fear, and uncertainty. It's a devastating event to be told you have an incurable disease. It can seem like the end of everything. But, it does not have to be.

    Since neither of us know where this will lead, and it's very early in the diagnostic process, let me talk to you about some facts. Lupus, is indeed a serious, and sometimes fatal disease. But, it can be managed, and with the proper lifestyle changes and the proper meds it can, in many cases, be controlled. One of our members, Kathy, has lived with Lupus for 44 years. That's a big chunk of time. I have lived with Lupus for five years, and although I do have my bad days, I am far from being on death's door.

    There is hope, but, you need to know that this is no picnic. It can be awful. It can try the patience and sanity of the strongest person. And that includes the spouse or significant other of a person with Lupus. It's terribly difficult to understand what it's like for those who do not have it. Even those who spend every day with someone with Lupus.

    Right now, for both of you, is a time of fear, and uncertainty. Just know that there are others who have gone through what both of you are going through right now. Talking to others who either have Lupus, or are the loved one of a person with Lupus, can really help. Knowing that other people have been exactly where you are, and have endured and lived a good life despite Lupus, can be a powerful reason to fight, and keep on living. Welcome, and please make yourself at home.

    Rob

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