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Lost Husband-How to handle Lupus when its your wife

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Posted 11/18/2010 10:59 PM (GMT 0)
Hi everyone.
I am here on behave of my wife. She was recently diagnoised with Lupus. And she has been going through the wringer just trying to come to grips with it. She is 33 years of age and is a mother of 3. Very active in our church and is very productive in life. Around the age of 17 she was diagnosed with having Thyroid issues and she was prescribed Synthroid. Well, her Thyroid never got better and the doctors continued to up her dosage of Synthroid. Well, the same song and dance continued for years. We recently moved to Texas from New Orleans, and her Thyroid became worse. She was diagnosed again with having Hashimoto Disease and prescribed with a natural hormone called Armour. Which they stated she should have been on from the beginning. Well the armour didnt help much either. She was always tired, moody, periods would be regular to irregular and could sleep for hours, and her hair begin to fall out. To make a long story short, she was tested for Lupus as a possiblity. but now it is official. She has been given a whole lot of meds. One particular, that I dont like. Topimax for her migraines. it makes her like a zombie, and just depressed. Somedays, we sit there, and its like we are not in the same room. I understand its the meds, but I would like my wife back. How do the husbands of wives handle lupus?
Posted 11/19/2010 1:32 AM (GMT 0)
Hi there, I would let the doctor know how she is responding to the med and see if there is something else she can try. I am hoping they did not start all the different meds at once....if so,how do you know which is causing what? Plus, I hope she is seeing a rhuemy for her lupus.
Good luck and tell her she is free to ask us questions, anytime.
Posted 11/19/2010 2:23 AM (GMT 0)
Hi there,

I read a lot of theese posts on here and I myself am newly diagnosed with lupus and sjogren's. I talk to my husband about all of this and he is much like you...lost. I feel horrible that he doesn't understand (and a little frusterated too to be honest). I feel horrible that I feel like I am bringing him down with my fatigue, moodiness, brain fog, pain ect. Is there a support group for spouses?

I hope that your wife is finally getting the help that she needs. It is awesome that you are so concerned for her that you are reaching out to others.

I hope and pray that you both get the answers and help that you need:)

take care
Posted 11/19/2010 3:35 AM (GMT 0)
I don't know of any support groups specifically for spouses of lupus patients -- sometimes it's hard enough to find local groups for patient support!

What some spouses have done before is find a group for spouses of the chronically ill. It will have members whose spouses have all kinds of illnesses, but at least it's a place to talk about how the disease affects YOU and YOUR life.

You might look at The Spoon Theory to understand more about Lupus fatgiue.

Best wishes,
Posted 11/19/2010 4:51 AM (GMT 0)
I would definately go with her to her Dr. appt. and talk with the Dr. . He can probalby help to resolve some of the issues by working with her on her med. maybe changing them around until they find some that help to alleviate some of the symptoms without some of the harsh side effects she's experiencing now. I have had lupus for 5 yrs now and I have to be concious at all times about what medications I'm willing to take with what side effects. My Dr. also understands this along with my husband. We discuss together the medications and each of our concerns. He understands that i"m the one with the desease and have to make the final decision but i also think he as a partner in this has an opinion and it's not for selfish reasons it's because i'm his wife and he wants to see me as healthy as possible. Maybe if you talk with her about some of the things that you are experiencing with all of this she may understand how much of an effect it's having on her family also, sometimes we tend to get soo depressed with our desease and the drastic changes it's made in our own lives that we sometimes don't see what it does to the rest of our family also. The only thing I do know is that without the support of my husband this would be very difficult to deal with. It really takes the love and support of an entire family to deal successfully with this desease. I pray for you and your family and for good health for your wife. This really is a life altering desease. God Bless You All.
Posted 11/21/2010 1:22 PM (GMT 0)

Hi!

I agree it might help to go with your wife to a few of her appts. too. This is where the marriage contract kicked in for us, and my husband said more than once.... in sickness and in health. Unfortunately, lupus changes everything. From the energy or lack thereof you start the day with, to the amount of exhaustion you fall into bed with. It took me along time to accept that if I did this..... I could not/should not/better not..... do that. I actually sat my kids down with my husband and made them read The Spoon Theory. My heart cracked when you said you want your wife back....lupus is tough on the whole family. My daughters, now adults, shared that they felt bad they were so intolerent when they were younger. Your wife is battling exhaustion that is hard to describe on a good day, and it is really hard to accept that lupus is not going to go away. I am glad she has you with her, and that you care enough to ask for advice.

hugs and keep us posted

suetoo

Posted 2/16/2011 4:33 PM (GMT 0)
Well I am a new husband of a wife with lupis. 10 years of marriage, 1 month of knowing about Lupis. I really want to understand, because I fear I may take things personally that may be a side effect of the meds or disease. I thought talking to those that are going through the same thing may help. She has battled fatigue for the last few years more so last year than ever before. Something emotionally has also changed. She was diagnosed a month ago and we went through the joy of knowing and her not feeling like she is just crazy. But now we are seeing reality and the effects of the meds, the good and bad days. The emotional change I have taken personal as she seems cold and less emotional than ever before. She wants to deal with everything herself and not bother me with it and I want to help. Also she seems to tired or uninterested in our sex life anymore, cuddling, talking all are still there but the desire seems gone. Again I don't know enough about this to know if this is part of Lupis the meds, if its something else or something all husbands are going through. We are in our 30s and I don't want to add to what she is going through so I am reaching out to the Lupis community for some guidance.
Posted 2/16/2011 4:43 PM (GMT 0)
Lupus & Sex: From years of reading here, all I can say is that it affects everyone differently. Most of our meds suppress sexual drive, but then a few are supposed to increase it. However, during the first few months of diagnosis, there is almost always a diminishing of sex drive...we just don't have enough energy to sustain it - lupus is *very* fatiguing. And often there is a degree of depression that also kills sex drive....

Did you read The Spoon Theory referenced above?

Don't worry too much about the emotional changes right now. I think we go thru the 7 stages of grief when accepting a chronic illness, and right now all her energy is focused on keeping it together. Later, once she's dealt with things internally, most likely she'll return to herself. (Although if she's on much Prednisone that can really affect personality.)

Just try to be calm, consistently caring, and give her some room -- I suggest finding a group for spouses of those with chronic illness (doubt you'll find on specific to lupus) -- and maybe a local group for lupus patients for her.

Hang in there,
Posted 2/17/2011 4:21 AM (GMT 0)
Hi Lost Husband- the fact you are here is So Good. Having been a Long termer now and in the 18th year of marrage 17th year of diagnosis my Hubby has seen it all, i tried the please leave when first diagnosed and he did leave ,for 4 hours aparently sat on a hill he returned at 1am and said he's in for good or Bad, and 17yrs latter Sure has been thru the mill. and i am not in anyway knocking him but just latley as i get worse it seems he dose a lot more on his own eg; i'll pop out to shop its Quicker just write a list,or you stay here i'll go to here or there and Yes he's right by time i get into car and out again then if its an able to walk day i hobble in with cane,if not its wheel chair , it is Quicker and easier But it is also Lonley and feel more of a burden than a partner,So do try to take her on those small trips even if it is a pain. i love it when we just go out for no reason then go thru Mcdonnalds Drive thru simply for an icecream cone and drive around while we have a race to eat it first,Little Things keep it going,and little things can Harm the relationship as well,i guess being ultra sensitive dosn't help either, i would say the old just be there is the best thing. it is So easy to fall into the paitent carer role and let the partners slip.
Posted 5/22/2011 5:20 PM (GMT 0)
Lost Husband, if you are still around I'd love to hear from you. I am really struggling after my wife became sick 3 months ago. I really can't imagine the rest of our lives being like this but I guess I don't really have a choice. Go to my profile and write me if you want. I'd really like to talk to another husband who is in my situation.
Posted 5/23/2011 2:51 PM (GMT 0)
Dodd.

You are about where I am now. Still trying to figure everything out.  I love my wife, but this is difficult. I try to help and she gets mad because I treat her like a patient. I don't help enough and she is so tired or sore that she is in bed early or in so much pain .  I am trying to figure out how to help without making her feel anyway other than normal.  I know I am new to this but I feel the same as Lost-Husband,  "I want my wife back", really I want me back.  Yes I am in it for better or for worse and in sickness and health, but its difficult when the person your wife was for the last 10 years is changed.  Hopefully She...I... and we will figure it all out, I do love my wife, my kids and my family. But, its like all the pasion has been sucked out of our lives. We talk, we cuddle, we are together, we are friends and I am her support, but there is something sure missing that use to be there.  I don't know if our issues are all Lupus but through this we have changed and I haved changed, and I feel like maybe I lost myself along the way. 

Good Luck to all lupus spouses. 

Posted 5/24/2011 10:43 AM (GMT 0)
B...rad, my wife is in bed 20 out of 24 hours. Those four hours she just sits in a chair. It's an improvement over a month ago where she never came out of the bedroom. It's agony to see her like this and I have a hard time imaging her better. My kids are starting to have a hard time to without their mom. I use to obsess with keeping the house clean when this all started 3 months ago but now I don't really care. My kids are only 8,9, and 11 so they don't help too much. To make it even worse, we were a duel income family and my wife made as much as me so now our income is cut in half. I'm already decided we will have to file bankruptcy and give up our beautiful home. This decision isn't helping her get better that's for sure. Her depression over everything is understandable but still hard to take 24-7. I feel like my hands and feet are tied and the noose is going around my neck. I don't know what we are going to do.
Posted 5/24/2011 2:57 PM (GMT 0)
Dodd,

Your wife may be suffering from 2 kinds of depression as well as from the Lupus pain and fatigue itself. She probably has situational depression (which you sound like you have as well) due to the changed income, changed activities, etc that you are facing as a family. Besides that, there is a chemical depression that is linked to Lupus itself. I strongly suggest that you ask her doctor about this - either s/he will treat it for your wife (mine did), or refer you both to someone who can issue some medication. Try to remember how guilty your wife is feeling to have "caused" all this.

Another thing that may be in play is her fatgiue. If she manages to sleep 20 hours a day (been there, done that) she is most likely not getting enough "deep restorative sleep". I know it sounds backwards, but try an over-the-counter sleep medication (as long as it's safe with her other medications). My rheumy suggested a prescription sleep aid - the first time I took it I slept about 20 hrs and woke up actually feeling like I'd slept -- something I hadn't felt like for months.

You don't mention what kind(s) of doctors she has seen or what kinds of medications she might be on. If you'll give us a clue we may be able to suggest some other options you haven't thought of yet. Many of us, while maybe not able to do housework and work, at least are able to be up and dressed and interact with our families.

Best wishes,
Posted 5/24/2011 3:05 PM (GMT 0)
Sorry to hear that. My wife doesn't work anymore either and she does sleep alot, probably more 10 hours up and 14 in bed (lots of naps) which is much better than your situation. I feel for you.

Doesn't it feel like the life is being sucked out of you. Man I feel guilty to feel this way, but I'm only 36 years old and this wasn't in the plan. The hard part is that you don't get better when you have Lupus. There is no cure it gets a little better as the meds help, but this is a life long desease that we are all involved in.

On one hand I feel so bad for how bad my wife feels and like any man I want to make it better I want to be there for her. I researched Lupus and went to the doctor which all helps. Honestly I have met some pretty happily married folks dealing with the same things, but there is a termendous understanding between these people. The spouses comunicated to know what each other needs and wants and so all needs are met to the best of both abilities. I think that is me an wife's issue is we are not great communicators.

I really want to and try to be the best I can be for her, but with her fatigue and soreness and sometimes depression she doesn't or isn't able to give me the affection (don't mean sex) just the affection that makes me feel like her husband. So then I find myself feeling like crap also.

We don't have financial issues I make enough so thats not an issue, but man! its tough. I will tell you if you can come to an better understanding of how each other feel and meet each others emothional needs it will be better relationship. It may go to getting her out of her depression which makes everyone's life worse and probably keeps her bed 4 hours longer than needed. Your life is changing and you will have to give up a lot and relocate but after all that for me its the relationship that is most important. I never understood until this how much I depended on my wife emotionally and now that is not there that is my issue.

JJ
Posted 5/24/2011 5:49 PM (GMT 0)
Many people with Lupus *DO* improve. Again, if you give us an idea of what doctors you have seen and what meds are being used, we may be able to help point you in directions so that your wives situations may be drastically improved.

The fatigue and sleepiness can and does improve with the right treatment!!! I used to sleep 12+ hours and then nap all day - couldn't follow even a 30-minute TV show -- but now I sleep 8 hrs & am up all day! MANY of us improve!

Please give us more specific info so we can help your wives and thereby help you!
Posted 5/24/2011 7:21 PM (GMT 0)
I recently read a statistic in a book about that said women who are married when they are diagnosed with Lupus almost half of them will end up divorced within 5 years.  This was an alarming statistic to me. 

I am 30 years old with three young children (6, 4 and 10 months) and have just recently been diagnosed.  I also have Crohn's disease so I now have TWO autoimmune disorders.  This has been a pretty harsh blow to both my husband and myself.  I am sure that my husband is feeling many of the things that you both are feeling.  It was good for me to read what you wrote and keep some things in mind in regards to my husband.

I am thinking that maybe my husband and I should look into some counseling.  I think that it might be good to have someone help us work through all of these feelings that are related to this diagnosis.  I know that for myself I am really trying to learn that my identity is not how clean I keep my house or that I make all our meals from scratch (which I did before and really can't now).  What kind of mother and wife I am is not about those things.  Am I teaching my children how to perservere in the midst of struggles?  Am I teaching them how to be kind and loving even when it is hard?  These are the things that I need to make sure that my children learn.  These are the things that are truely important.  I am also trying to remember that even though I am tired (which, really, tired doesn't really describe it) my husband needs me too.  I read The Spoon Theory that was recommended by Lynnwood (which you should REALLY read if you haven't and also The Lupus Book) and I make sure to save one spoon for my kids and one spoon for my husband.  I have given up many other things that I love so that I can make sure that I have enough for them. 

This is hard though.  Hang in there and I think that, like my husband and I, it might be good for you all to try counseling too.  I know that some even have reduced rates for people that need some financial help.  We are all in the early stages and coming to grips with this diagnosis is not easy.

Posted 5/24/2011 11:08 PM (GMT 0)
Lynnwood,
My wife's story is kind of strange and had the doctors scratching their heads. I'll try to be as brief as possible. My 34 yr old wife was completely healthy and our family went on a 7 day cruise. Everything there was great. The very night home she noticed a rash on her leg and butt. Everyday for a week it came and went, usually at night. Then the daily fevers started and the rash started covering other parts of her body. Then the joint pain and swelling, fatigue, butterfly rash, migraines, brain fog, vertigo, hair loss, dry eyes and mouth, ice cold hands. She saw a Rhuemy then Infectious Disease doctor. Everyone thought she caught something in the Caribbean because it was such a sudden and severe attack. But since then that's all been ruled out and she is for now diagnosed with inflammatory Arthritis with a positive ANA. She's been on prednisone for over a month along with other drugs. Three weeks ago she started Methotrexate (by IM)and Plaquinel. She also takes Wellbutrin, Valium, antivert, zofran, fentonol patch, ambien, folic acid, calcium, vit D, and antenol (?). Her current dose of Prednisone is 50mg and she tapers 5mg every week. At 45mg last time her fevers and whole body rash usually returns. Her blood work hasn't proven Lupus. She has a low positive ANA, high CRP, high Sed rate, high ferritin, but nothing else hasn't been positive. She did have a positive SCL 70 once but for some reason the Rheumy never really mention it. She said she just doesn't want to label my wife quite yet.

Post Edited (Dodd) : 5/24/2011 5:15:42 PM (GMT-6)

Posted 5/25/2011 12:31 AM (GMT 0)
I give all the husband inquiring about how to handle their wives' Lupus alot of credit. You are seeking help in understandig this horrible disease. It must be very hard for all involved. Seeing a loved one w/ Lupus is painful. I have a multitude of health issues and nothing comes close to seeing my very good friend suffer through her Lupus. She struggles everyday. She has been more in the hospital than out and she is only 27 yrs. old. God be w/ you and give you the strength you all need to cope w/ this illness.
Posted 5/25/2011 3:49 AM (GMT 0)
Dodd,
Thanks for the additional information. Plaquenil is the initial treatment of choice to slow disease progression. Prednisone is generally the next thing administered to treat the inflammation and get it down to a controlled point.

MTX, Imuran, and Cellcept are the 3 next options -- it varies from Dr to Dr which of the 3 they try first. And you may have heard "lupus has 10,000 faces" -- each person's illness can react totally uniquely to that person, so it is never clear which of the 3 might work. (In my case Imuran was first for 8 months, no effects, then Cellcept was my miracle drug - others get improvement with Imuran or MTX.)

Lupus is diagnosed by having 4 of 11 symptoms, there is NOT any one (or set of) blood tests to determine Lupus. Some drs diagnosis by symptoms, some hold out for blood work, but the College of Rheumatology and the Lupus Organization both hold strong to the 4 of 11 diagnosis method. My (fairly educated) guess is that she does indeed have Lupus. However, the dx isn't the main point, the treatment is! It does sound like she is getting adequate treatment.

It is *very* difficult to get a good nights sleep on that much prednisone....it's the equivalent of about 200x the adrenalin push those people that lift dump trucks off their children have. You might ask the Dr about something stronger than Ambien so that she can get deep restorative sleep. It isn't the quantity of sleep, it's the quality that we're talking about. I know it's counter-intuitive, but I think I've said before what an amazing difference it can make.

I know the suddenness of this is a surprise to all of you -- this is a disease that is *VERY* sensitive to stress. It also is very sensitive to heat and sun. If I went on a Caribbean cruise, sunbathed in the heat, overate, drank, and did the go-go-go thing with site seeing, I would be terribly ill as well.

Even with all that you describe, she CAN get better. And you drs ARE doing the right things. If at all possible, some therapy concentrated on lowering stress would be a great help. Even knowing how you are feeling can be a relief as I'm certain she is imagining even worse things than you are. Bond together as a family, don't pull apart and alone. Check with www.lupus.org, find the local chapter, then call them as locate local meetings & support. Even without a firm diagnosis, you will meet people in all stages of the disease and it will help. (Even I went, feeling like sh**, looking like sh**, and being a very shy person.)

Hang in there, you are not alone,
Posted 5/26/2011 12:36 AM (GMT 0)
Lynwood, thanks for the detailed and informative response. I guess it's just wait and see. Its all very hard. I try very hard to be there for my wife. She is struggling just as much mentally than physically I think. There are times we cry together and times I just hold her. But there are times when her depression and complaining just get to me and I don't want to hear it 24-7 everyday. I usually get quiet when this happens and she gets mad at me and says I don't understand. (side note that I grew up with a dad with MS and my mom died from cancer when I was still pretty young AND I myself suffer from gastroparesis which thank god I am doing well, but that is all another story). What makes this so hard is that i was a caregiver much of my life and I don't want to do it again and I am so angry and frustrated with life that I just want to scream and/or cry. It took a long time for me to find happiness and now it seems to be gone. I just want my wife back.... Meanwhile, I just skipped my home equity payment. Doubt I'm going to pay my mortgage either...
Posted 5/26/2011 1:13 AM (GMT 0)
I'm sorry you are having such a difficult time. I don't know if you have started any paperwork for social security disability for her, or short-term or ling-term disability for her, or even family leave of absence for either of you. These might be things that can help alleviate some of the pressure if you at least get the paperwork started for them. I hope you can talk with some social workers (some states have different levels of aid available) or someone before you this affects your credit and your home.

It's okay to tell her you need a break and go have a golf game or play tennis or whatever calms and centers you. Maybe say both of you need a break and put clean fresh sheets on the bed, pour a nice calm drink (even if it's coke in a fancy glass), and a comedy movie with the kids at the neighbors for a couple hours.

It's ok to take a break, or to feel guilty about it, and ok to get yourself replenished -- it's like on an airplane - fix your own oxygen before you can fix kids or wives!

Hang in there, my friend. Check hospitals and churches for support groups of people with chronically ill spouses.
Posted 5/26/2011 2:01 PM (GMT 0)
Dodd,

Again I feel for you. That is some really good advice. Take care of your self or you can't take care of your wife. Please the people that are on here that have lupus answer me this. I have said those same words..."I just want my wife back". I understand that Lupus gives you aches and pains and termendous fatigue. But honestly when I say I want my wife back, I am talking about her personality. The woman that was fun, and funny, and loving and overly affectionate. Since my wife has been diagnosed that has gone away. That doesn't take much. I would lay in bed and cuddle for hours. I would watch movies and give back rubs and talk. But since we have found out she has Lupus she is somewhat cold. Really I would not think that Lupus would affect the things that made me fall in love with my wife so long ago. I have read and read and read and I understand the spoon theory. Why would it change her personality also. Right now I have a wife who since the diagnosis has gone from my wife (friend/lover/mother) to a good friend who really is not all that loving anymore. Does Lupus or the meds really change that or am blaming the wrong thing? should I be on a different blog. I guess I blame Lupus because everything changed when she started going through her symptoms and then got even worse after begin her meds.

I have read the divorce rates of Lupus. I don't care if she cooks or cleans I can do all that. But no one will stay in a relationship that they do not feel loved and if Lupus or the meds have a large affect on that then that could be a good reason for the status. The books say divorce is because of a lack of education or understanding of what the spouse is dealling with. I don't want to be that person. But it says nothing about personality changes, unless its refering to the depression.

Please enlighten me
Posted 5/26/2011 3:10 PM (GMT 0)
Hi Lost husband, I'm so sorry the meds are making your wife so drugged up. I was like that once from meds and the doc was able to adjust it to be less intense. I can tell you something I learned to say to myself. "This can change". Keep the faith and seek wisdom to know how to help her. I am fairly balanced in my meds now. However, there is always something that needs to be dwelt with and once the grief passes I am okay. I am presently involed in prison ministry in spite of the Lupus. Things can change.
Posted 5/26/2011 3:28 PM (GMT 0)
B...rad,

Yes, the drugs can and do affect the personality. Sometimes there is some leeway for the doctor to change things around to see if another combo works better.

The Lupus does as well - other overwhelming fatigue just takes so very much out of you that there is no energy left for anything. Fun, funny, loving and affectionate take energy. Remember the last time you had a bad flu that made your whole body ache and your mind numb? It's about all you can do to take meds and try and eat a little something.

PLEASE find your wife some support for her depression. This is "my life is over/ruined, it's all my fault, I've ruined my husband & childrens lives" kind of depression that is 10x worse than what you are feeling. You *have* to get yourself some support before you can offer any to your wife. You may both need some depression meds to get thru this until her body reacts and is able to get herself back. It took me almost 4 yrs to feel like myself again, thank goodness someone stayed with me. It can get better, but it isn't magic and it takes work.

I went for years saying depression meds were for wimps. In this case, both Lupus and her meds affect brain chemistry --- the depression is chemical in nature and only depression meds help. Please trust me on this.
Posted 5/27/2011 4:57 AM (GMT 0)
I have spent 6 years refusing depression meds and counseling. Once I listened to my doc say it might calm the flairs down, I was able to agree to it. Pain and flair were less intense so I felt better. Talking and grieving the loss of who I once was, helped as well. I founded, developed organizations before this disease. Now I am different. At work I am known for my ADD symptoms, and wonder some days, how I will make it. The grief stages come with each new symptom, lousy bloodwork, etc. And then I can laugh again. Then my kids and boyfriend laugh with me. There are great books out there to help.
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