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MinioN
06-13-2011, 04:24 PM
Hello,

So I'm new to this forum. I'm here for myself, but because someone I love has lupus. I'm not really sure what else to say, so I'll just cut through all the bs and get to the point. I need advice.

I was born with my own genetic issues, a muscular malformation of my eyelids. Nothing that shortens my lifespan or compares to lupus. I've had over a dozen surgeries. It's painfull on a daily basis but something I can deal with. I'm only 25 and am constantly told I'm an "old soul" because of everything I've been through. This being said, I recently fell in love with a girl who has lupus. I hate to say the cliche, missery loves company, but we find comfort knowing that we understand each other, and our pain, on some level. She is one of the few people who brings a smile to my face. The problem is, I'm committed and she isn't. She dosent want to hurt me in 5 or 20 years when she dies. To me it won't matter. It hurts just as much to lose her now, or after a lifetime. I keep telling her how I cherish every moment we have. Because thats all we have. And she still stays distant from me. I have all the patience in the world for her, because it's all I can have. But how do you guys deal with this issue? I'm sorry to hit what must be a sore subject so bluntly.....



Also on a rando tangent I recently saw a man was cured of aids/HIV from a bone marrow transplant. What does this mean for lupus? Can lupus be cured by the same method.

Thanks for any and all advice....

Peridot20_Gem
06-13-2011, 04:40 PM
Hello MinioN,

Welcome to WHL and you've joined a great family with so much help and advice to give so you won't go short of help and understanding.

Sorry to hear you yourself have gone through so much and how you met this young women you both sound very compatable and if she makes you smile there's so much going for you both and why she thinks she may not be around in 5-20yrs god knows.

Lupus is helped with advanced medication's for different condition's and it's rare someone dies, Lupus is not a disease you can cure but with the right medication to help the system, your life can extend a good while.

I suggest you talk to her about it and what you read from the threads and try and hold in there mate because if you love her and she feels the same, she's worth fighting for even though you've gone through alot yourself.

((Hugs to you Terri)) xxx

tgal
06-13-2011, 05:01 PM
Hi and welcome to WHL. i am so glad that you found us. It is very, very rare that people die from Lupus anymore. That usually only happens when someone stops taking their meds for whatever reason. Please lead long, productive lives with Lupus now. There really is no reason for anyone to put off their life because they are going to die. Just ask people here who either have had it for decades or whose parents have lived to old age and they will tell you. This doesn't mean that there are not bad days (or weeks ) but they can get things worked out and she can get stabilized. Maybe you could give her some information from the Lupus Foundation of America or simply have her sign up here. I believe if she learns a bit more about what is going on with Lupus now she may feel better planning a life for herself.

steve.b
06-13-2011, 06:13 PM
i have been diagnosed for the about 2 years, but suffered for over 30.
lupus rarely kills nowdays. people die from the complications. not the desease itself.
if lupus is effecting the heart, and you stop taking medication, you could die from heart failure.
if lupus is effecting the lungs, and you stop taking medication, you could die from lung failure.

stay on the medication and you should live to a good age.

please learn more, having lupus does not mean you have to stop living.

lizbond36
06-13-2011, 06:14 PM
Welcome to the family, I wish I can give you some tips but Terri and Mari said it all. Just be there and listen.
Hugs
Liz

Gizmo
06-13-2011, 08:40 PM
Hello,
The problem is, I'm committed and she isn't. She dosent want to hurt me in 5 or 20 years when she dies. To me it won't matter. It hurts just as much to lose her now, or after a lifetime. I keep telling her how I cherish every moment we have. Because thats all we have. And she still stays distant from me. I have all the patience in the world for her, because it's all I can have. But how do you guys deal with this issue? I'm sorry to hit what must be a sore subject so bluntly.....

Also on a rando tangent I recently saw a man was cured of aids/HIV from a bone marrow transplant. What does this mean for lupus? Can lupus be cured by the same method.

Welcome MinioN! You sound like a very caring person with a generous heart, despite your pain. I hope that your friend will appreciate the gem that she has before her. You have gotten wonderful advice from others here. The only thing I will add is the suggestion that you maybe take a step back and give her a little room to deal with this new situation. She may have convinced herself when she was diagnosed with lupus that she could never fall in love, or that no one would choose to be with a lupus patient. Your love for her may be messing with the mental image she had of what her life would be. You can be there with your friendship, support and encouragement. She is incredibly lucky to have someone in her life who cares enough to approach a group of strangers and ask for help on her behalf.

There is research going on at the National Institute of Health in bone marrow transplants in people with life-threatening lupus. As others have said, lupus is rarely fatal anymore, but people still become very ill from organ damage. I couldn't find anything on how the research is going, however. Something in the back of my head says that the initial people treated were essentially "cured", but that they had to be on death's door to get into the study because bone marrow transplants are so risky. There are several researchers working with stem cells in hopes of finding a cure for lupus, so there could be a dramatic change in treatments in your friend's lifetime. I myself am in a drug study of a monoclonal antibody that is showing a great deal of promise for some lupus sufferers.

lovedbyHim
06-13-2011, 09:45 PM
Hi minioN, boy can I relate to your girlfriend! When I found out I had lupus, I stopped dating my boyfriend who truly just wanted to help me and love me. I believed horror stories about the disease. As I adjusted and learned, I went back with my boyfriend(smile)

One day I stood in a grocery line and met an 84 yr old with lupus. she was diagnosed at 40. I went home ecstatic! I was sick in my 20s. I am 53. I take my meds religiously.

Hope this helps. Oh for the record, it was patience on my boyfriends part that made me take a risk of loving again. Hang in there and let her adjust to the new her. Keep up the good work!

Peridot20_Gem
06-16-2011, 06:20 AM
Hi minioN,

I hope your doing fine since you joined...plus your day is less pain free. xxx

MinioN
07-08-2011, 06:16 PM
Hallo,

Sorry for the long period of no reply. I've been traviling a lot. So we are in a relationship now. From what I've figured out, she dosent have health insurance and is too stubborn to accept my help. She is very independent, which is something I like about her. I'm worried that if I get onto her about the way she lives she will push away, yet at the same time am worried about her health. The relationship is slow going, and it's definitely to soon to push or nag.

What's the best way to go about getting her to help herself without nagging? I can only show her he door.....

Gizmo
07-08-2011, 06:49 PM
It's really hard to have someone you care for refuse your help, but there is only so much you can do. My feeling is that the only thing you can do is continue to offer your friendship and support without being judgmental about her health choices and without pushing her to rely on you. She may feel overwhelmed by her health and financial issues and simply not have the emotional energy for more. I know when I don't feel well I tend to withdraw, even from my family. While I appreciate it when my family offers me help, it also reminds me that I need help and that is a downer. My gut feeling is that you need to give this lady some space and accept her the way she is. Maybe she will grow to trust you to help her as time goes on.

Saysusie
07-09-2011, 08:20 AM
I know how difficult it must be to want to help someone with a chronic illness as well as other difficulties in their lives and that persons appears to push you away. You have been given some great advice concerning her possible state of mind. I would only add that perhaps you could make sure that she knows that, whatever happens, you are always going to be there for her. That she need only ask, and you will do everything that you can.
You are doing one of the best things that you can do for her: learning as much as you can about Lupus, its symptoms, its treatments, how it affects her personally and things that can help her to manage her illness so that she can leave a somewhat normal lifestyle. Educating yourself will help you to understand some of what she is going through and help you know what things you can do (or not do) to help her. Perhaps, while you are learning, you can also share your knowledge with her (if she is receptive). In this way, you are not nagging her, but walking the journey with her.
Please continue to come to us with questions or concerns and we will always be here to help you as much as we can. I do admire you for your willingness to help and care for her, even with your own health issues. :-)

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
07-16-2011, 02:16 AM
Hello MinioM,

I hope your feeling fine since you joined we and please keep we updated on how you are.

Love Terry xxxx

Elo
07-18-2011, 11:55 AM
Well, a belated welcome to the forum is in order, hehe.
Everyone on here has given you wonderful advice (: In the end, gentle patience and perseverance wins out. Just let her know that you are always going to be there for her to support her, and be with her through her journey.
It's understandable that you would feel more of a connection to someone who knows your pain. We who deal with chronic illnesses and pain have so much trouble being understood by people who have no idea. It's very hard when your partner doesn't understand, so having someone who really knows what you're going through is comforting, even if you would never wish the pain upon them.

As everyone else says, she should be able to live a long wonderful life - even if it isn't "normal" or "healthy", by other peoples standards. She is no superwoman..she will need people there through the good times and the bad, and you can be that person who stays by her. You seem like such a sweet and wonderful person, and she is very lucky to have you, especially when you're so understanding (:

Welcome again (belatedly), I hope everything works out between you two. Scratch that, I know it will, even if it slowly unfolds (:

Peridot20_Gem
07-24-2011, 03:49 AM
Hello MinioM,

I would be nice to hear if your doing fine since you joined we...please keep we updated when possible.

Terry xxx