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shorty12

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 #1 
Well I was diagnosed with lupus and since I last posted, I was waiting to see my Rhumetologist. I have been in so much pain but since I started my plaquenell it has been better. But I'm finding myself alone in this. My husband has moved to the other room. if I say anything about being in pain he says whatever.... i don't know what to do. I have two small boys and I am 34. luckily my friends who work on an Ambulance and my firefighter family bring me joy when im down. I feel so alone. I thought we were married for better or worse. any advice on helping my husband understand? I feel like I'm losing him due to all the stress.
Robinj

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 #2 
As you probably know, Plaquenil takes 3-6 months to build in the system, so glad it's getting better and hopefully will continue to do so. 
Has your husband gone to an appointment with you and been able to hear what the doc has to say? 
If he chooses to disengage himself from the situation, I would give him the ol' heave ho. But I am a tough b!tch when it comes to sh!t like that.

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shorty12

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 #3 
This has crossed my mind and others have said the same thing. But I wanted to get an idea from others in our situation. The other bad deal is I am under his Ins....
clgrover

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 #4 
Perhaps your husband is scared. Fear does strange things and we do strange things when living in fear. The same is true of ignorance. Fear of the Unknown is powerfully immobilizing.  I am caregiver to my wife who has Lupus. I discovered Caregiver-Online of the Family Caregiver Alliance at the same time as I discovered this. It has helped me greatly. Link: https://www.caregiver.org/caregiver-online-faq
If/when he becomes amenable to looking around he might find helpful information and support in the discussions among caregivers. 

Going with my wife to her medical appointments is helpful to me.

To work on your marital relationship you yourself might benefit ftom skilled counselling -- alone to start with.

shorty12

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 #5 
Thank you Clgrover I appreciate the link and to get a view point from a spouse who is on the other side of things. I think just everything in the last year has been a shock to our systems.
taffylinden

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 #6 
I agree that ignorance breeds fear, and fear can keep us ignorant, and maybe it's fear that drove your husband out of the bedroom, but whatever HIS issue is, the message to you is clearly, "You're on your own," and that's painful and very, very frightening. Just when you needed him most, your husband has, in a sense,  abandoned you. (I do think it's significant that he left the bedroom but not the house.) You say, "all that has happened this year," so I'm guessing there's more than the lupus diagnosis going on here. That doesn't change how his moving out of the bedroom affects you, though.

I went through something very similar in my marriage. I won't go into that because this is about you; I mention it only so you know others have been where you are and survived.

And I think counseling is an excellent idea, even if, as clgrover said, you end up going by yourself. 


shorty12

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 #7 
Thank you. It took over a year to get the lupus thing figured out. He felt it was all in my head just like some of the docs. I think reality just hasn't set in. I am just glad to hear I'm not the only one.
redhigheels

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 #8 
Shorty12,
I took my husband on all my doctors apps and they all explained to him how sick I was,
wings65

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 #9 
Personally, I think the words, "for better or worse," "in sickness and in health," should be stricken from the marriage vows. Some husbands are easy to bail when having to deal with these challenges, especially facing a wife's illness. We women are more likely to hang in there. Chances are, if the shoe were on the other foot, you would not have left your marital bed (unless it was for your husband's comfort). I applaud those husbands who hang in there.

Perhaps your husband is fearful of the unknown. Has he attended any doctors' appointments with you? This could help him better understand this illness that, maybe, he cannot "see." Try to get him to go with you to your next doctor's appointment. Knowledge is key to understanding this disease.

I wish you and your husband the best.
shorty12

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 #10 
Unfortunately he has been unable to go to any appt due to his work schedule. I am hoping he does soon. I think this has to do a lot with fear. I am taking some above advice and scheduled to see a marriage therapist again....i doing this alone as well...ugh
taffylinden

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 #11 
I like what wings said, and I'm so glad to hear you're going to a marriage therapist, even if it's alone. I had to do that as well. In my case, the now-ex went with me to a few appointments first--This was after a year of h e l l--before he got angry and refused to go any more. In my solo sessions, the therapist told me two important things: 1) It's not you; it's him. He has a personality disorder that's impossible to treat. 2) Get out.

It took me years to follow her advice, but she was spot on. Even going on your own, a therapist can give you a lot of insight into your husband's actions.

You know him best, so if you think it's fear-based, I believe you. Many lupus patients have had relatives tell them it's all in their heads. It's very hurtful and  conveys a lack of respect and compassion. 

I hope things work out for you. 


Cakelady

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 #12 
Sometimes it takes something very drastic for them to see it. It took me getting very very sick and the doctors saying we could loose her before my husband fully understood what was happening.
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Robinj

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 #13 
For me, I really don't have time to dick around worrying about making someone else understand. If you don't get it and refuse to be open then c'ya. 
I only have so much time here.
My boyfriend understands after many discussions, but he wants to know. Does he have a hard time dealing? Yes, for sure. But he has never wavered from my side? Hell no.  I am fortunate. 

Life is short, Kids.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Cakelady

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 #14 
Couldn't agree more Robin
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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
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