Am i losing my husband to lupus

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panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 3/29/2011 2:43 AM (GMT -6)   
I have been married almost 20 years. I feel a chasm between us and it scares me. The affection is not there, though he says he isn't going anywhere.When i had burning tongue so bad he said he wouldn't kiss me again. i don't think he realized how bad that hurt. i tried to explain, i don't need swinging from chandeliers just kiss on the cheek, hand on the shoulder, reassurance.

He is a soldier, well that is what he is great at, and he is doing that guard now and he is a full time police officer. He is a dedicated student of the Word of God, but he lacks in the area of compassion, (or i should say sharing emotion) I am not great at that either. because he is compassionate it is just rare to see.

I just miss him. He is here. but i miss us. He asked me if i felt like i was going to make it. and i said some days i don't know. But we are all terminal. nobody gets out alive.
I have been in a bad flare for a few weeks. The distance thing has been going on i would say for a few months.. each time i get something else diagnosed.

I am now having issues with my brain. neurology next. thanks for listening.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/29/2011 10:09 AM (GMT -6)   
(((((((((((((((((((((gentle hugs)))))))))))))))))))))

Your husband is probably feeling helpless. He strikes me as a man who needs to be in charge (preacher, soldier, police officer)and right now Lupus is in charge. It's not something he can get control over, because it's like fighting an unseen enemy taking sniper shots at the woman he loves. He can't fight back for you, so he's withdrawn into himself and is feeling helpless and probably scared for you.
This evening try this if you can. Have some gentle cuddle time. Just cuddle together and tell him how brave he has been and how much of a rock he has been for you. Tell him how much you love him, his strength, and support. (Some may not seem true to you, but he may see it differently from you.)

Then if you need to find a marriage councelor or another pastor (not a friend pastor) to help mediate between you.
I hope everything goes well for you. (((((((((((((gentle hugs))))))))))))))))))

panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 3/29/2011 12:04 PM (GMT -6)   

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 3/29/2011 2:52 PM (GMT -6)   
Hi Panther Fern:

I've been with the forum a long time, and I'm really sick so I normally don't post. However, I do read the posts and I felt I needed to respond to you. I understand where you are right now in your relationship and how you feel. My husband and I have been married 26 years and he retired from the military after 22 years on active duty. He works a job full time and does all the stuff here at home and then he cares for me. On the weekends he finds his solace in drinking all weekend.

It's hard for our husbands to see us in the conditions we are in. I've suffered with lupus for 23 years. Then I had fibro added on, the RA. My last biggest problem is a form of blood cancer caused by one of the meds I took to treat my lupus. I'm very very weak, I'm on oxygen 24/7, and need blood transfusions every few weeks. I shake and tremble, I'm now starting to shower myself, up until then my husband has been having to give me a bath.

I asked my husband why he didn't hold my hand anymore, or why he doesn't kiss me anymore, why things are just not the same. He replied "you're so sick I don't want to bother you". I know I'm unable to do the things I use to, if we go out I have to use a wheelchair and he has to push me. Our husband are military men they handle and fix things. They can't fix the lupus and mine certainly can't fix my blood cancer now. I also think personally in my case I've been on pred for 10 years and I've got all the side effects from it I look so funny, I've got tiny chicken legs and a huge round tummy. Oh and I can't forget the hump on my back. I don't know if it's whats causing my hubby to be distant I mean I don't look like the woman he married at all. I think he looks at me as a burden at times but he's never violent with me. He reminds me that our vows were "in sickness and health till death do us part".

So my suggestion to you is this go up and give your hubby and kiss on the cheek and a big hug. I know we need the support but they need some too. They are fighting for us too we just don't see it. They may not understand at times how we are feeling, and they may get short tempered with us. I've found it's the doctors who my hubby is most upset with. Sit down with your spouse and explain how your feeling Let him read the spoon theory. You may find that your hubby is just afraid to be affectionate with you cause you're so sick. Talk to him and let him know you miss him and even tho you're sick you need him to be there as your rock.

Anyway, I want to wish you the best and I hope that the doctors can get things under control for you.


Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 3/29/2011 7:53 PM (GMT -6)   
Wow, don't know what to say but that you both made me cry.  It sounds like you both have husbands who have been through sooo much but truly love you and just feel helpless at times.  All I know is that I need to let my husband know how much he means to me and  to show it to him more.  We celebrate our 22nd anniversary this Friday and I am thankful for every day of every year that we have had.  God bless you both and your husbands.
Hugs and Angels,

panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 3/30/2011 12:13 PM (GMT -6)   
We actually talked last night about everything. I was military in the persian gulf and got sick. it took about 10 years to figure out what i had and since then the downward spiral. I often don't tell him things to protect him as well. As there is nothing anyone can really do.

It is funny all the hard things we can discuss and make decisions about. This topic just seems a bit harder. but we are working on it. He asked me some questions that he was afraid of the answers and i did the same. I am not on prendisone because coming off of it is a hard one and i don't know if the benefits now out weigh the costs at this point.

I've been very insecure the past two months as my brain, eye sight, hearing have all been not so good. I am not wanting to go to a neurologist. mostly because it is just one more appointment. lol. I have a good attitude most of the time but lately i am overwhelmed by meds and symptoms.. i am sure all of you have been there too.

I know he is there for me and vs. Just wanting a bit more energy. Thank you for all of your replies.

do any of you do supplements and meds. it makes me very uneasy to take anything even otc unless all of the drs. know about it. just wondered.

This too shall pass. Diana

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 3/30/2011 1:05 PM (GMT -6)   
Well, I take things like fish oil, flaxseed oil, vitamins, calcium and drink lots of water to flush out the toxins. My doctor knows this as well. You just have to figure out what drug regiment works for you to have the best quality of life that you can have. Yes, they all have their side effects and risks, but I feel that as long as my doctor is monitoring my blood results every 3 months I feel comfortable with what I am taking right now.
Hugs and Angels,

New Member

Date Joined Mar 2011
Total Posts : 19
   Posted 3/31/2011 7:30 PM (GMT -6)   
My husband recently told me that if I just believe in him...that he has my attention, he can do anything I need him to. I think that we need to encourage them sometimes. I can't imagine watching my favorite person in the whole world suffer day in and day out, the way he has to when I am in the middle of a flare.

We just started doing something new. Unless something really crazy comes up, we talk about anything but Lupus. We have set a time during the week to vent, cry, ask questions...and it makes me feel so not under my Lupus. Now obviously if I can't walk, my eyes are blurry and I have thrown up several times during the day...ok we talk about it. But it is wonderful to focus on other things around us. Our kids, the weather (I live where it snows and srping is coming!), the last sketch I did, the NFL draft, anything but how sick I am.

I am so sorry to read about how awefully sick some of you are. Please know that you are still you...the things that make you special, unique and wonderful are still there. Don't lose sight of that. Be whatever is hard for you today!
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