My hopes and future

[Tigger360]

Hi my name is danny and my girlfriend has Lupus sle.

We have been together for about 4 years now and im starting to really lose it. In recent months she has been in and out of the hospital. I really care about her alot and I think a part of me never left her cause I care about her alot. But just hearing her in pain and not being able to do anything is really doing a number on me.

I have been thinking alot and all I can come up is with "WHY?"

I never thought I'd be in this situation, when I was younger I would always day dream about having my own family and the perfect wife. But it looks like that will never happen because of the lupus. I feel a bit responsible because when we first started our relationship she started taking birth control pills and that just brought the lupus out.

She got pregnant 2 years ago and she had a abortion because we are young and not ready yet and also her doctor highly recommended it. All I ever hear are sad stories and horrible things about lupus. I feel like if I continue with the relationship im just going to end up really hurt. But not just a regular hurt but a hurt that will never go away. Its like a countdown to her death and I'll never know when it can happen. I do want a family one day and a wife that wont be in and out of the hospital. But I think it wont be with her. But you never know :blink:

Im hoping that a cure can be found in her life time I really hope soo

I believe in Karma and what goes around come around. And if I leave her because she's sick I know I would not be able to rest easy. It would haunt me!
But Its weird I cant leave her even for other reasons like catching her talking to a Ex. ect ect

But dont get me wrong in our relationship we have fought lots of times about things like any couple would. And its not all roses always but I also think that I never left no matter how close we where to breaking up because I dont want to break up with somebody who can die soon. Im not a bad person and I try to do good but im just confused and my thoughts and emotions are all over the place.

I got alot of love for her but I dont think im in love????
I wonder if there is somebody else for me cause me and my girl are like oil and water we are just soo diffrent. But yet we get along..................sometimes.
Are we together because we have just been through alot with eachother?
I even think she's with me because of the lupus maybe she thinks no other man would want her? I just dont know


I know there is no easy way out or any easy answer maybe things will work out who knows.

Just wanted to get some of my thoughts out there im sure there's more I can say but right now my brain is doing backflips. I would love to hear some of your thoughts on this it would help me alot.


thanx

[Starrgazerlilly]

Hi Danny

Just wanted to send you a hug and to thank you for your honesty which must have taken some energy and courage. It must be very difficult to separate the love issues from the illness issues. I don't know what it's like to be with someone very ill as I've always been the ill person but I imagine it must be very tough. It's hard for us ill people to deal with the disappointments of lost dreams so it must be equally hard for a partner who intends to commit themselves to the same limitations.

I would like to say though, that it might be helpful to look at what the "perfect" wife means, because it's easy to have an unrealistic idea of what perfect is. When you're in a tough situation it's so easy to see "normal" life as perfect and that everyone else is alright... but actually most people struggle and life can be a disappointment whatever the situation.

For me personally, I manage to find guys who think I'm great, that I cope well with my illness, I'm always there for them, they sort of put me up on a pedestal where they don't want to commit to me because I'm so ill but they don't like to think of me finding someone else so they go off and have imperfect relationships with "perfect" people that never match their expectations and then when it all goes wrong they check back to see if I'm still there. It's like they're waiting for me to get better so that I will be perfect but I will most likely never get better. It's a shame they can't see that I am already perfect, just different. It hurts. (I don't mean to talk about myself, just didn't know how to explain what I mean any other way).

I'm sorry your girlfriend is going through so much and has been so ill and also that she went through an abortion which is an awful experience. I'm also sorry that you feel so trapped and confused right now. I hope you manage to work out what it is you truly feel for her so you are able to move forward in your relationship in one way or another.

A lot of people on this site have children or are expecting a baby, hopefully they will post something to let you know that it is perfectly possible to have children once Lupus is controlled. There are others here who have adopted.

Anyhow, take care of yourself and good luck in working things out.

:flowers:

[Tigger360]

Thank You! for your words it means alot I was worried that I'd get bashed or that I came off like a concieded jerk. Since there have been alot of heart break because of the lupus among people in this forum. I also think at times that if I left I would be missing out on something real. Everything is just so crazy right now but I will say this if it does end it will not be beacuse of the lupus. I guess it is hard and its not gonna get anybetter sometimes I let her get away with murder because of her condition. Im really gotta put alot of thoughts into it all. Everything is just soo crazy for me now I cant even sleep well.


but thanx again

[mamascan1]

Hi Danny,
From your post I found alot of thinking and feeling that seems most sincere. I can appreciate that. I hope you are able to work things out in your heart and mind and come to a decision that is best for you and your girlfriend. That being the case I would like to share with you a bit of my life and how my illness has worked for my husband and I.

For many years I was a "power woman", wore expensive suits and killer heels, had the perfect figure and an intelligent mind and an optimistic view. I felt I could do anything I set my mind to. And for many years I did just that. My husband and I met just after his divorce (married for 9 yrs.) and he persued me as if his life depended on it. I enjoyed the attention, but I'd always gotten that from men, as I was everyone's idea of "perfect".

My hubby and I have been married for 15 yrs. We've raised 4 kids (his, mine and 1 is ours together). I always worked in business admin and then moved that into the medical world. Being a working mom with 4 kids took alot of energy, especially as I was a perfectionist. But I loved it!

I became ill 3 yrs ago. I have Lupus SLE, Sjogren's (another auto-immune disorder) and fibromyalgia, as well as asthma, migraines, etc. You are probably asking how I changed? I'm no longer an overachieving, stress monster who has to handle everything. On ocassion my housekeeping isn't perfect, I stopped working 2 1/2 yrs ago. I take alot of medication now, I've gained some weight but I am the same person I've always been. I still love just as fiercely, with all my heart, I am still protective of my children-even the 3 who are grown. I still have a sense of humor. And my husband and I are still in love, after 15 yrs. My illness has changed some things, but now my hubby has the opportunity to "protect me" on ocassion, I am no longer a crusader, as my own home and family take all my energy. I offered my husband a divorce when I became ill, so he would have a chance at "a normal life". He is more devoted to me now and couldn't think of living without me.

At 43 years of age none of my "illnesses" are considered life threatening. I do have days when I can't get dressed, and follow my normal routines. But as with everything in my life thus far, I do the very best I can each and every day. My illness hasn't defined me or my family.

May you have the peace of mind and heart as you continue to "sort" out your relationship. My hubby told me I'm still "the perfect one for him", just in different ways than before. But isn't that what love is? Changing and growing?

Sending you prayers and Courage,

Michelle :flowers:

[Tigger360]

Wow mich you sound so much like my girlfriend I swear she can do anything if she wanted to. But you see the only thing is she is the strong one you have your husband to take care of you. I can barely take care of myself sometimes and im not sick.

But still I see what your saying and it does give me some hope thanx Michelle

[Starrgazerlilly]

Danny,

I wonder if you are stronger than you think? A weak man would've run away already and certainly wouldn't have written such a considered and thoughtful email. Please don't be too hard on yourself. We all have our weaknesses but that doesn't mean we aren't strong too.

:flowers:

[helloos]

Hi Danny. I too think you have courage for posting your concerns. I also think that maybe you need to step back and sort your feelings out.

Put the disease aside. Think of all the reasons you want to marry, and the reasons why. Without the disease.
It seems as if you were questioning everything and maybe it does not even have to do with the disease, but instead with other things. The disease may just add into it.

I also think that if you truly love this person and respect them that you need to be honest about your feelings to her. I do think that you should not, or anyone should not, stay with someone out of guilt, or a reason of they might die. This is not fair to you and not fair to her. I think that you owe yourself and her that much. You can be a much better friend to her if you are honest to yourelf and her.

I don't know if I am making much sense here, and I by no means want to be insulting. I am talking to you as if you were my son. I wouldn't tell my son, don't stay with her because she is sick and may die. I would tell him to take the disease away, and see if he is really happy and in love with this girl. I think that is the only way to do it. If you come up with no, then the disease has nothing to do with it, and you need to take a step back. You can certaintly remain good friends with her and give her the support she needs, if it can remain that way. If you say yes, you are in love, etc. then there is your answer. You take the good with the bad.

You are in a very hard and difficult situation, but only you can make that choice. I understand what you say when you want to have a family, etc. and not be with someone who is sick, again, you need to make that choice. If you stay with her because of the disease you are not being fair to yourself or to her. It sounds like you have a lot of respect and good qualities. Good luck.
Paula

[jude mack]

Hi Danny

I think you are allot stronger than you give yourself credit for. You seemed to have done allot of soul searching about your girl friend, sounds to me that you really love her, but the lupus is now the main problem. And this would be so for many people, it is something that has to really be thought out, have you talked to your girlfriend about your feelings, she may be wondering where all this is going also. As you can see many of us live fairly normal lives and you can too. But this is a dicision only you can make, and I really hope the best for both of you. It took
allot of courage to post your feelings, so keep posting and let us know how it is going. There will always be people here to support you, not matter what you decide.
Take Care
Jude :wave:

[Tigger360]

Thanx guys I will try to talk to her about it but the subject is a bit hard to bring up sometimes. I think it I took away the lupus maybe we wouldnt be together but I can never know cuz it cant happen. When we first got together her lupus came out fresh into the relationship so ive been dealing with it for a long time now. I have had alot of changes in my life it sucks when we go out and we have to go back home cuz her lupus kicks up. But I learned to deal with it. Ive lost a bunch of my jobs cause when she gets bad I take alot of time off to take care of her and end up getting fired. Its alot for me to deal with since im still young.

Wish I could tell you that everything will be fine but only time will tell.

But on another note.

I really wish there was no lupus and I hate that people barely know about it. I feel like other diseases get alot more attention then lupus. I'll bet if the presidents daughter had lupus we would all see results for a cure soon. Even our color ribbons changed color from purple to orange :sigh:

Where having a walk on Oct. here in New York I hope alot more people come and maybe even get to hear about it in the news. Aids and cancer are always on TV but I barely hear about lupus.

[helloos]

Hi Danny. You are so right about Lupus not being out there. My friends think I am dying, and I am not. More needs to be known about it.

I feel for you and know that you are going through a hard time and decision. You didn't say if you had a date set for a wedding?

Maybe if you post pone for a while, you can get things straight.

Just remember that marriage is a full time commitment. It seems you already have a full time commitment.

You said above that if you took the Lupus away, you probably wouldn't be with her. I think that is your answer. I think you have a big heart and that is why you stay. Fear of what will happen and fear of how she will feel. You obviously have strong feelings for her even if you are not inlove with her. I feel for her to have this disease at such a young age, but you cannot let it tear you apart and make her think something is there if it is not. We, who have Lupus, want to be treated as normal as possible. I can certaintly understand the position you are in. And how you feel. Also, I try to think if I was you how would I feel being young and with someone who was sick. I have no answers. I guess the best way for any situation is the truth. We can get hurt from it, but can also heal from it. It is when the truth isn't told that you never can heal from.

I think you are a strong person and you need to make choices for yourself. I know it is hard, but just as she has to do things that are right for her, so do you.

Maybe a good conversation with her about your feelings will be a start.

I will say a big prayer for you tonight to have the courage and strenght in what you decide to do.

Paula

[alobreto]

Hi, Danny! ;)
Right now you're in a 'dating' situation, which by definition is NOT a commitment. Dating time is the time you spend with others in order to make a DECISION about commitment.

It's unfortunate that you've been intimate enough to create another life at an age you indicate is 'too young.' That said, it still doesn't mean you're in other than a 'dating' situation.

As human beings, we all experience painful events and are sad when a close relationship ends, even when the familiarity has bred contempt for the other person involved.

It sounds to me like what is holding the two of you together is inertia, and little more. Inertia is the scientific property of a body in motion to stay in motion.

You're absolutely right to examine the 'dating' relationship before it turns into something longer term like marriage. I wish you well as you go about making your decision.
Best personal regards,
Angela :flowers: