HealingWell
Search Close Search
☰

Lost Husband-How to handle Lupus when its your wife

Support Forums
>
Lupus
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/28/2011 12:59 AM (GMT 0)
my heart is breaking for you. my husband and i will be married 20 years this fall and i have had lupus and other illnesses for 15 plus years. i was on topomax at first it made me really tired. i don't take it anymore. So i discusssed it with my dr and i only took it like 1/2 hour before bed. When you are first diagnosed ... i remember denying it for ever. I read on a computer site ... lupus-no cure i bawled.. so i decided i am not looking at that stuff anymore. i also have 3 chidren and they were young when my symptoms started. I often feel like a loser mom and wife. I don't know exactly why God Challenges people with different things. I love to be in control, very organized and moving constantly... and then lupus. it changed the way i do everything. It was ironic that i thought i had control of life and then illness. It has been a growing period for me over the last 15
+ years. some days are good... a lot are not. It takes time to find what combination of medications that work for you. I am on a biologic orencia and methotrexate those seem to help me the most but the metho can be rough on your liver... but lupus can be rough on all your organs.

from your wifes prespective I was worried about being around for certain milestones and events... (still am sometimes) but then i realized i spent more time worrying than enjoying simple things. If God brings you to it...he'll get you through it. It is hard to hand it over sometimes because you are helpless to a point. try to reassure her that you are not going anywhere. I know it is hard on my husband because he can't fight it or shoot it or fix it; no one likes to see loved ones in pain or comotose on meds. you may want to go to a rheumatolgy appt with her and state your concerns... because there are a lot of choices ... topomax took me a good year to get use too. started at 25mg and worked up to 200.
Things that will help her most is a good nights sleep. let her dr know how she is or isn't sleeping. i went on meds to help with that. Routine is key.
I really feel for you. It is hard on the husband to pick up the slack or even know what to say or do.
best wishes
Posted 5/28/2011 12:58 PM (GMT 0)
Thanks for all the advice everyone. As far as my credit and my house... Good as gone, about as fast as my wife's health and our families happiness. We were stupid with our money and lived paycheck to paycheck in a huge house that is way upside down. Her short term disability policy pays 70% and that already started to put us in a whole. When that stops July 1 she will get zero and that will be that. So we already decided we will declare bankruptcy and give up our house. Where we live is very much in the air but if it wasn't for our kids I wouldn't care if we lived in a trailer. But all that doesn't matter if my wife can just get well. I know she will never be exactly the same but I hope she can get close.

B..rad, hang in there brother. It's been three months for me and it seemed pretty hopeless at first. My wife actually laughed yesterday, the first time in forever. All these women that have this disease are telling us it will get better we just have to hope it does.
Posted 5/30/2011 7:40 PM (GMT 0)
Dodd, maybe you can move into a reduce rate apartment or duplex for awhile? It will get tough for awhile, but hang in there. There is a light at the end of the tunnel.
Posted 6/26/2011 5:05 AM (GMT 0)
hey
im a lost husband and a scared one i love my wife with every thing i have we have three kids and im trying to learn how to make her fill better about her self she is losing hair and it scares her. she called me at work crying and i just want her to be all right i don't know what i would do without my wife. she is my everything please give me some advice on what to say what to do i can't bare to see her in pain and hurting. i try to be strong for her and tell her how much i love her how wonderful she is .I am going to be with her for the rest of our lives and no matter what i say and how i act in front of her at the end of the day i just wait for her to go to sleep and i cry im scared and i know she is .she is 25 years old we have known she has lupus for 2years now and i think it is unfair i should be the sick one and her be healthy. i'm sorry i just need advice we have three kids and its hard to take in but no matter what i want show her that i cry .

sorry for the bad typeing.
Posted 6/26/2011 5:49 PM (GMT 0)
Sit down with her and talk honesty with her. Tell her all that you are feeling inside. Let her see you cry. Then together you both go to a councilor perferably someone who councils people with dread diseases. You need to communicate.
Life is hard when in a couple there is sickness. The other loves so strongly that they just want to take the sickness onto themselves. My sister is married to a partially paralyzed man. It hurts her to see him suffer. She tried to be the rock for him, but its a strain on her emotionally. I know the stress you're under.
What are the ages of the children? Can they help out with some household basics? They can pick up the toys and put the clothes in a special basket to help out even at age three.
Posted 10/16/2011 10:31 AM (GMT 0)
Well, it's been 7 months now and little has changed. My wife still isn't even diagnosed with lupus yet. Still calling it inflammatory arthritis. She's still taking methotrexate, Plaq, prednisone, and many others. She is still on 40 mg of Pred. Just can't get off it. She has shown little improvement but she has to get off these steroids. Her Rheumy wanted to try her her on Enbral but said it is for rheumatoid arthritis and not lupus and could actually make lupus worse. I asked her if she then thought it was RA and not lupus? She said she didn't know but it was worth trying. I went home and read about Enbral. It has very scary risks but I also read of amazing and quick results. I still think there is little doubt she has lupus but the temptation of finally something helping was too much. She took the shot before going to bed. She woke up around 2 am to go to bathroom and said, "I can already tell I'm going to have a bad day". (note: everyday is a bad day but some are worse than others) She eventually fell asleep but I haven't. I've listened to her cry a couple times in her sleep and although it's only been around 10 hours I'm pretty sure this isn't going to work either. I want to cry now but no tears will come.

We filed bankruptcy in July and that part is almost over. The foreclosure on our house should happen in May. I still have no idea where we are going to live. I'm starting to work a lot more which will be hard for my 3 little daughters. It will be hard for them as I'm pretty much a single parent now. My poor girls... Tears flowing now. I guess i'll never run out of tears for them. I pretty much accept that life is over for my wife and I. My only job now is to raise my kids and take care of my wife.
Posted 10/16/2011 6:39 PM (GMT 0)
(((((((((((((gentle hug))))))))))))))
So sorry your wife is suffering so. I understand your heartache. Try to lean on any support system you can find, for your wife as well as for you.
Posted 1/14/2014 3:00 AM (GMT 0)
Recently my wife was diagnosed with lupus. Like most there have been several years of pushing her to go to the doctor and now more work keeping her going to the Dr. I really don't know how to help her on any level, considering we are in the middle of a transfer and I'm currently several hours away. The mood swingers are horrible and it is very hard not taking it to heart. I just want to take it from her, that way she would never have to feel any of it. Not saying I would be able to deal with it any better but at least she wouldn't have to feel the pain and uncertainty of the diagnosis. We are still in the stage of figuring out the medication and also the many different other items that she has....the fatigue is so hard on her and she just keeps going as far and as fast as she can. I'm glad she isn't giving in but it is hurting her more that she realizes. It kills me and will continue to kill me knowing I can't make the love of my life feel better. I do realize that this could be a bit selfish but I hate seeing her go threw it as much as she hates going threw it.
Posted 7/15/2014 12:54 AM (GMT 0)
I know this is an old thread but I came across it and thought I would revive it. I'm in a tuff spot with my wife who was diagnosed 6 years ago with Lupus. We have been together 13 years and have 2 kids. I've always been there for her emotionally, financially, provided the best medical care imaginable and so on and so forth. But for years I've withstood so much emotional abuse that I'm at the end of my rope. Today I started looking for a doctor to go and talk with and try and understand how to cope. Our marriage has almost ended twice so far but I keep holding on and fighting to keep our family together.

Our problem is that her personality has completely changed. She is hot and cold. Some times I see the person that I fell in love with and everything is really good and literally in the same day it can swing to just pure hatred towards me. I can tell just by the look on her face and her presence that she's now gone. I swear that it's the Plaquenil, the steroid creams and whatever meds her doctors have her on at the time. Finally there is no prednisone but I think the strong creams are just as bad.

Her brother passed from this disease at the age of 16 so I know how serious this is and I've done everything in my power to help her and be there for her. I even got her in with one of the worlds leading doctors at UCSD who is now at NYU.

I'm truly at the end of how much I can take. Our oldest also bears the brunt of it until it's all focused towards me. Then she is the nicest Mom on the planet while all the hatred is centered on me. Then is swings back again.

I really don't know what else to do. I've suggested a plant based diet and trying a month or a few weeks without the medications. Just to see...... I've read a couple of books on plant based nutrition that literally put lupus into a permanent remission. I've done the same with heart disease utilizing that same diet.

I just can't stand the hatred that is focused towards me and I cannot understand why. It is killing me emotionally and physically. I literally have zero self worth and feel like I am worthless.

Sorry to lay this all out there but I just needed to tell someone.. anyone....
Posted 7/15/2014 1:44 AM (GMT 0)
((((((Gentle hugs))))))))

You seem to be a very caring husband. I suggest seeing a councilor. You're both under a lot of stress and need to see someone to mediate and vent to.

You're welcomed to vent here too.
Posted 6/25/2015 2:11 PM (GMT 0)
Reviving this thread because it is very relevant to me and my wife, who has had a strange beginning to this journey of "possibly/probably/but-not-definitively Lupus." Is there anyone else still interested in this thread? If so, I'd be interested in an update on people...

RocketKid - It's been a year since your post. Any improvement? Still married?

MissingHalf - My wife is like yours... go-go-go, severely fatigued, and refusing to let me know how I can help even when I BEG her to just let me help in some way. She wants me to be rested so I can focus at work, but I fear that attitude will kill our relationship and our marriage.

Dodd - Your situation hits home with me. It's been almost 4 years. Has anything improved in your life? When you said that your life is over and now it's just about taking care of your wife and daughters... man... that is exactly the feeling I'm starting to get.

B...rad - How are you doing? I feel the same way that you do - the person I married has mostly vanished, and I'm left wondering if I'm supposed to just be OK with a lack of affection, let alone passion (what's that?), for the rest of my life.

Lynnwood - thank you for all your great responses. How are YOU doing? Have you heard of, or experienced, any new developments in the treatment of this horrible disease?
Posted 6/25/2015 4:23 PM (GMT 0)
Newest developments -- Benlysta and IvIG treatments are being used a lot these days. Great additions to the older treatments of Plaquenil, Prednisone, Imuran, Cellcept, and MTX.
Posted 7/10/2015 4:57 AM (GMT 0)
I am glad to know that I am not alone in dealing with a wife suffering from LUPUS. The problem that I am having is not financial or affection or anything like that.. There is a big change recently with my wife. She was diagnosed with LUPUS back in 2013. She went through all the crazy symptoms and hair loss and all that skin condition. She gained lots of weight. She was able to deal with all that and she is not almost back to normal.

One problem and is a big problem that I am going through with her right now is her PARANOIA. She seem paranoid a lot. She things she is hearing whispers and is very sensitive to little noises. She gets mad at me when ever I try to tell her that its nothing and that she should not worried about it. It gets so bad that she started taping the doors, windows and all cabinets around the house. She things someone is watching her. The bad thing is that she talks to my youngest son which is four and believes everything that he says. It gets so bad that she thinks I have some girl coming in to the house through the window, attic and roof. It is getting so bad that its affecting me in a lot as well. Its putting a big stress and hold on our future. I can't even by a house because of my fear that we may end up divorce. We have been married for 12 years now and I am always dealing with her complications.

I may sound heartless but she has done many things to me that would have resulted in divorce long time ago. But i stuck with her because i love her. Now its affecting the future not only mine but the kids as well. I now installed security camera in my house because she thinks some girl is always coming in the house to meet up with me. I sometimes afraid for my life because of the threat that she makes about finding a girl in the house. She had a situation when she was first diagnosed with LUPUs. She chased her mom with a bottle of salt because she accused her mom of doing some voodoo on her.. It was really scary. I am afraid same thing could happen this time but much worse. She once ran around the hospital trying to jump off because she was hearing voices. Now she is stapling the carpets and table cloth.. Men I need help I will call the doctor tomorrow.

I feel better now that there is a forum I can vent on.. Thank you.
Posted 7/10/2015 5:57 AM (GMT 0)
Definitely get her some help.
Posted 7/10/2015 10:17 AM (GMT 0)
dlace64,

Is your wife taking high doses of prednisone? Sometimes it can cause paranoia -- definitely worth checking into. There are alternate medications such as Imuran, Cellcept, MTX, Benlysta, and IVIG.
Posted 7/26/2015 12:56 AM (GMT 0)
Being on the other end of having lupus for 7 years, married for 15 years, my husband probably has felt a lot of what you all are feeling. I sleep 8 hours and am up during the day. I work at home, go to school, take care of 2 kids, clean the house, cook. I have fatigue every day too. I just learn to manage it by resting a lot in between. Lupus doesn't always make you bedridden all day, but I guess it varies so much from person to person.

Its hard with an illness to understand how others might be feeling about our illness, as we are the ones physically suffering. Its hard to really put yourself in the others shoes when they at least have their health. They are physically capable of more and you think they are strong enough to handle it. I do understand and feel guilty almost when I can't do certain things my family wants to do. I went swimming yesterday and of course in bed today recovering, probably shouldn't have but I just wanted one day of fun. I always have to plan things away from sun which is hard when your family are outdoorsy and sun worshipers. Anyways, this disease is going to affect each person different emotionally. I think emotional health here is key, because it can take so much away from you. Also I think fighting back is important. I chose not to be on disability and find a different career I could do and still make money for my family, working from home. It will be an income comparable to one I would have out of the house. I got into medical transcription and now Im getting into coding. These are jobs that are largely done at home and you can also go to school online. Coding pays much better than transcription, if you are needing more income. This has helped my husband cope as well. I have life insurance with the company Im with now. Also I think a positive attitude is very important. Many people live normal lifespans with this. Its lifelong, but its also not as deadly as other illnesses out there and it could be worse. I try and tell myself this and feel thankful for what I do have.


✚ New Topic ✚ Reply
12