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Any advise for spouse dealing with my Lupus?

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Posted 10/30/2007 12:32 AM (GMT 0)
My hubby is such a great guy & always 100% supportive of me - even if I do feel sick most of the time.  But, as you can imagine, he fears the worst ... that Lupus is a death sentence.  I've explained to my hubby that the meds to treat Lupus have come a long way over the years & have helped many people live much longer heathy lives.  Still, my hubby wishes that 'some day' I'll be cured & be free of the 11 total meds I currently take.  I sure wish that would happen, but I guess I'm just too realistic.  Does anyone have any suggestion on how to make my hubby feel better about my Lupus diagnosis & instead of fearing the worst?  Jenny
Posted 10/30/2007 1:01 AM (GMT 0)
Jenny, that's a good question and it's a hard one to answer.  Thankfully your hubby is very supportive, but that's probably what makes him worry about you.  One thing he could do is to go to a rheumy appointment with you so he could ask any questions he has and let to rheumy reassure him some. I'm not sure how much this would reassure your husband, but we always recommend that spouses and family read The Spoon Theory.  You can find it at http://butyoudontlooksick.com .  It's a great way to explain to others what it is like to live with the ups and downs of lupus. I'm guessing others here will have some other ideas for you.  Take care
Posted 10/30/2007 2:05 AM (GMT 0)
Hi Jenny, actually I think the fact that your hubby is so caring is a wonderful thing. Give him a hug for me. Also tell him I said you are Exactly right Lupus used to be a death sentence but meds and awareness has come along way. Some people can have lupus and never even know other. Others have gone into remission and many people here have been symptom free for a long time. I know on here you hear alot of the worst problems we deal with but that's only because the ones that are feeling good are out there living their life to the fullest. Yes Lupus has taken lives before but there are many many more that go on to live a very long and productive life. None of our loved ones want to see us sick but if we take our meds and rest and destress the more likly we are to have a much better outcome. We all want that magic pill that makes us all better but keeping a possitive attitude is half of the battle. The less stress and the better care we take the faster we seem to recover from our down time. You both need to just keep possitive and try to dwell on the good stuff.
hugs
carol
Posted 10/30/2007 2:15 AM (GMT 0)
Hi Jenny, I have no organ involvement so its pretty easy for me to have a good attitude . . . but I went from 10 different rx meds to just two . . . so good things do happen. I always am amazed at times we have worried over an ill family member, only to suddenly lose another family member who wasn't ill at all. Not to give you another worry . . . but it seems to happen too often. Tell hubby "enjoy what you can today!!" Tomorrow has its own worries . . . Blessings!
Posted 10/30/2007 12:31 PM (GMT 0)
Ladies, Thank you for the wonderful words of encouragement! Those postings brought tears to my eyes - in a good way - because I'm thankful to be a part of this wonderful support group! I'm having my worst flare up right now, but I'm glad that forced me to join this group of amazing people! Thank you everyone - you've helped me more than ever, Jenny (((((Hugs)))))
Posted 10/30/2007 4:24 PM (GMT 0)
Jenny,

Your post reminds me so much of my hubby. A doctor friend of ours told Jack last year that lupus is a horrible disease and insinuated that I would probably die from it. It was several months later that my hubby told me what his friend had said and it made me sad that he had been so very worried for so long. He didn't take into account that his friend is a gynocologist who no longer practices, and he's in his 70's. I was able to sit down and talk to my hubby frankly about lupus and I found information on the web for him to read. I also took him to one of my appointments with my rheumy (Hippi, you and I think so much alike) and asked her to address this issue. She helped ease his mind. Fortunately my lupus hasn't hit any of my internal organs and I'm slowly improving. Like you, I hope for a complete remission so I take very good care of myself.

Consider us lucky because more often than not, posts that deal with hubby issues are usually about partners who aren't supportive or understanding.

I believe that what has helped my hubby more than anything has been my acceptance of my condition which has caused me to have a much more positive attitude.

I'm so glad you like the forum and are getting comfort from being here. It has been a lifeline for me. I haven't been very active lately, probably because I'm feeling better and am getting on with my life a little more each day whereas I used to sit around all day and my computer and I were attached at the hip.

Give your hubby a big hug.

((((hugs))))

Pat
Posted 10/30/2007 5:58 PM (GMT 0)
Hi Patty, Good to hear you are doing so well and getting out and about. I'm keeping you in my thoughts and prayers that you have a good long time of feel well.
love ya
carol
sorry Jenny I just wanted to try to catch Pat to say hello
love ya
Posted 10/31/2007 12:19 AM (GMT 0)
Hi Jenny,

   The others had some great advice for you. I love the spoons theory! It's always hard on family members when someone has a chronic illness....(((hugs))). They seem to always fear the worse, but the more they read and educate themselves the better.

   Please take care and keep us updated. You and the hubby will be in my thoughts and prayers.

                                                             Babs

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