LUPU-- Please help me help my wife.....

Does relationship suffer living with lupus?
Yes - 50.0%
No - 50.0%
We go out only at night now. - 0.0%
Much happier - 0.0%
No change. Still love each other like boyfriend and girlfriend - 0.0%
Yes - 0.0%
No - 0.0%
We go out only at night now. - 0.0%
Much happier - 0.0%
No change. Still love each other like boyfriend and girlfriend - 0.0%

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New Member

Date Joined Jun 2013
Total Posts : 2
   Posted 6/27/2013 12:44 PM (GMT -6)   
Ok. So I think i have found the best site for lupus. I have read some of the threads and it has been very help full for me deal with my wife's situation.

I was on deployment when I found out that my wife was rushed to ER. I was talking to my daughter over the phone when she told me that her mom was sent to the hospital. She told me that her mom was so weak that she was crawling on the floor shaking and was turning purple. She smartly called one of our friend who ended up taking my wife to the ER.

With the support of my command i was able to take an emergency leave to be with her and care for our kids. We are yung couple. I am 33 and my wife is 31. We have 3 lovely kids ages 1 1/2, 3, and 9 years old. Our great friends gladly offered to adop our kids for now while we are dealing with the situation.

I flew in today and after so many delays in flight i am finally here in Japan where i am stationed. For the first time I saw my wife months after I left and I saw how down she is. I can tell just by looking at her that she is taking this situation really hard. I feel so sorry for her, I can see the depression on her face, the sadness and the question of "why me?"

I had a chat with her doctors and I found out that she was really bad when she was first admitted. She suffered multiple seizures and was unresponsive for a short period of time. We all notice that she is showing or suffering some type of short term memory loss and is having a little problem with some words. Thou she speaks great she sometimes stutter with some words. She seem weak, but the doctors and nurses told me that she's a lot better. Her rashes on her arms and legs are much better and slowly going away. Will all these symptoms go on even after she's better?

I was talking with my wife and she was told me how worried she is about the butterfly rashes on her face. We are not sure if its going to go away after she heals or is it going to leave scars. She is so concerned about it and I can tell that it's hurting her and effecting her emotionally inside. Her confidence is so low. She's actually an out going and fun person to be around with. But now she seem totally the opposite towards the nurses and other people around her even to our friends. Does anyone know if the butterfly rash and those round pimple looking rashes will go away? Is there some type of medication that can help make it go away?

She's eating much better now that I'm with her according to the nurses she would hardly eat. The doctors and nurses could not wait for me to get back and be with her. She wa so worried about my kids and was always asking for me. We have known each other since high school and in next two weeks will be our 10th year anniversary as husband and wife.

I am so great full for having such a great support from family, friends, and work. Now the only thing that I really want is for my wife to get better. It kills me to see her so down. I always tell her to be positive and that everything will be alright. The doctors are giving her lots of medication since they really don't have the results from all her labtest even thou they know for sure it's lupus they want to make sure that they treat her for every possible disease there is. Infections and viral medications are giving to her along with vitamin B's and some type of steroid. Can anyone tell me from experience if this steroid will have a serious side effect on my wife and If there is some type of similar medication that will work best with less side effect?

Also we were told that we may have to go to Hawaii to see some reuhmatologist since there is non here in Japan. ( Or at least on base) Does anyone know any type of medications That I can tell the doctors to help my wife get better? I have read some of the forums here and have seen lots mentioned about planquil.

I really don't know exactly what type of questions to ask for me to help my wife out. I just want her to get better. I started this account for her so she can have something to go online to and relate with others who can relate with her and make her comfy at best. She's sleeping right now and I am just looking at her helplessly. Please help me help her. I will take any advices and support that can help her feel better. She has a face book under our daughters name Julee Lace if any of you would like to comment and show some type of support and advice. I love my wife with all my heart. I want her to know that I will love her even with the butterfly on her face.. I been telling her that all day today to make her smile. lol. I thank you all in advance.


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/28/2013 1:56 PM (GMT -6)   
(((((((gentle hugs))))))

It sounds like she had a very bad flare. She will get better once her symptoms are stablized. She needs to start taking care of herself more than ever now.
There are several medications to help control symptoms: plaquenil for fatigue and to slow down the progression
Steriods for bad flares
benalya (sp?)
And others I can't remember very well :/

The rashes will come and go. They usually show up when we're feel poorly. They don't scar unless she has discoid lupus. She needs to start protecting herself from UV rays.
So no tanning beds, fluorescent lights, CF bulbs, halogen lights, and cover up completely in the sunlight.

Memory problems will dance around in our heads. It's something messing with the processing skills in our brains according to my psychologist. It's worse during flares.
There's ways to work around it and she will adjust.

I remember when I was first told I went through a "why me?" stage, it still pops up at times. It helps to get her a councelor to talk to who deals in chronic illnesses.

There is no cure for lupus, but if she takes care of herself properly she can live a long life with few flares.

Make sure to go to to find out some of the things she may have to deal with and she's welcomed to visit here herself as well as you. Caretakers are always welcomed here.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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