View Full Version : my future husband has lupus....
02-26-2007, 08:17 PM
I am new here and badly in need of someone to just listen....
I am 24 years old and planning to marry the love of my life this June. He and I have been together for 2 of the most fabulous years of my life. He is my strength, my soul, my absolute everything. We were engaged on the beach in Europe last July. And when we came back, we were diagnosed. With lupus.
At first it was nice to have the diagnosis. A DVT, anemia, joint swelling and a nice little rash under his right eye....this is what he had. The most ironic part is that we are both medical students and started to notice the rash when we were studying for our board exams. Now I look back and I remember how I thought we had our life stretched before us and I feel so sad....
He is currently on azathioprine, prednisone, and plaquenil, doing well. Hemoglobin normal, managing APS with coumadin. Trying like mad to get off hte prednisone (HATE that drug!!). But I feel such a loss.
Every day I go in to see my patients on my morning rounds and I look at the wives with endless patience, love, and pain in their eyes as they listen to me talk to them about their husbands who are sick. Their strong, handsome husbands now reduced in weakness to whatever it is that ails them. And lately most mornings I have to find a closet to hide and cry. I am so scared that one day- maybe soon?- that woman will be me.
I love this man more than life itself. The question is not do I marry him, the question is how do I cope with this pain, with the questions, with the NEVERENDING FEAR that one day everything we have dreamt about- big things like children, careers, and small things like Sunday morning jogs and coffee runs- will never be ours? I think terrible things that I cannot help- I feel angry at everyone- the rheumatologist, the medications, healthy people, myself, even my fiance (how HORRIBLE) sometimes, and then I quickly feel sad, so HELPLESS, that this AMAZING, STRONG man who is the picture of patience, intellegence, strength and honor, has to deal with this disease. Of ALL PEOPLE- him!!
I try to look at the bright side- we got the diagnosis quickly, he takes his medications regularly, has a wonderful world-reknowned doctor, and we can take steps early to prevent bad complications. It has helped me to see how to talk to my own patients- to understand FEAR- fear of the UNKNOWN and what it is like to have so many questions but to not even know how to put them all into words.
I never thought I would look to a discussion board for support....but this fear I have is so secretive (most people do not know his diagnosis), and it is eating me up inside. I don't know how to be strong for him, I don't know how to not be scared. I don't know how to not grieve for the future I dreamt of having....
Any support, even just an email of encouragement, would be much appreciated. I just need someone who can understand where I cam coming from to talk with...
Thank you so very much for reading this novel.
God Bless you all!!
02-27-2007, 06:33 AM
First off, it's wonderful that you love him so much and are willing to stay by him. So many people run where there is sickness involved.
My mom has Lupus and she was diagnosed about 28 - 29 years ago. So while Lupus is a very ugly disease, I do believe that so much of how it (and many other things) effect each person is attitude towards it. My mom was always the strongest person I knew. I couldn't think of anything she couldn't do and I never thought this disease would get the better of her. From what I have read on this board, I know that I - we were lucky to have so many years of virtually nothing really wrong. She kept a very positive attitude, took the medications and kept up with what was going on her with. She had a lot of time where she was in remission and she still followed up with her Lupus specialist.
You have to take time to get used to the fact that he is sick, yes. But try not to let it be the first thing you think about when you think of him or look at him. The two of you could have a very long and happy time together with children and the whole nine!
A huge factor in his health is to keep the stress down in your lives is a huge factor to keeping the flares to minimum, proper diet, and enough rest.
I would also recommend getting counseling for yourself to help you deal with the sense of loss you feel. Remember the 5 stages of grief and work through them. And you have to be strong for him as well.
I hope this helps and you need to talk to someone, please feel free to send me a message.
02-27-2007, 08:08 PM
You should not be ashamed to be afraid, or to feel angry, or to grieve. You HAVE lost something - both of you have. You've lost that feeling of immortality that most people have at your age. You deserve to grieve for that loss. But you should know that many, many people live successful, long, productive lives with lupus. I'm pretty new to this diagnosis myself, and am still coming to terms with what I can and can't do now. I belong to this forum, but I also belong to a support group in my area. Some of the people in that group have lived for many decades with lupus, and are often symptom-free. There are many on this forum like that as well - I know you'll hear from them. You're a medical student, so you have no shortage of access to good information. But do check out the Lupus Foundation of America website. There's good information there, and a good reading list. The more information you and your fiance are, the better equipped you'll be to manage the ups and downs of this crazy disease. It's a moving target - no doubt about it. But there are things to do to prepare yourself - and to spare yourself. I wish you both the best of luck. Please check in here often. It's a great place to find support, information and sometimes just to cry or vent. Welcome to the "Family".
03-18-2008, 09:04 AM
I realize this was posted over a year ago, but I really was touched by it, especially since I am in the hospital with my husband right now. He has been here for 10 days now, and is doing better, hopefully going home in the next day or so, but it is really hard. I love my husband, and will always. It is tough sometimes though, and you can't help but be angry and get upset and sad by the way things used to be, or the way you thought they were going to be. I think that the hardest part is having no control. I hate to watch him suffer when there is something wrong, and there is no way I can fix it. I just do my best to be there for him, and try to not show frustration in front of him when it is not good. I am 28, and my husband is 30. He played football and wrestled in high school, played football in college, worked out everyday when we were dating, always was social and wanting to go out, be outdoors, etc. We have been married 5 years, and 6 months after we were married, the blood clots started and the pain, etc. We went through 6 months of tests before they finally determined it was Lupus and APS. Then the Reynaud's started, last year he got diagnosed with a lung disease, and now, just this week one of his medications (provigil) we believe has caused him to have aseptic meningitis. He was very ill, the doctors even said they were worried. This week has been so scary, emotional, and exhausting. Luckily for him, he does not remember a lot of it. He is better now, and should be going home soon, so I am happy. I am glad I found this board. Sometimes you just need a place to vent, but I feel I can't because I feel guilty when I am healthy and he is not. Once I told him, I have Lupus too. Maybe I don't feel the pain of it physically, but it absolutely gets me mentally, which at times does affect me physically. It is hard, and it does change your relationship and it changes the life of the spouse as well. He of course has been changed by it as well, he is no longer the athletic, social flirt I used to know. I know that may sound bad, or like I am complaining, but it is just a fact unfortunately. I still love him more than anything in the world, but he is just different now, which is understandable. So am I. I was only 23 when we got married, and I was a different person then than I am now. Much younger, much more naive. I never realized how much this could affect our marriage. Now we are better, we know how to communicate and let each other know when we are down, or unhappy, or just need support, but then I think that he would shut out his feelings alltogether and not deal with them, and it was really difficult. It has been a long road, and I do think we are closer because of it. I do not know what I would do without him, which is probably why I get so scared and angry. Especially when he does stupid things that are negligent to his health, like not go get his PT/INR checked because of the coumadin for several months. (I found this out in the emergency room when they wanted to do a spinal tap and could not because it was at a 6!). That scares me. That is something he controls, but I have to deal with the consequences as well. That is serious, when he was out of it in the emergency room having convulsions, a rash all over his body, and 104.2 fever, and I was hoping they would hurry and find out what was wrong with him, I was alone. He couldn't talk to the doctors, or me, and I was so scared. Then they come back and say, sorry, we can't do any of the tests we needed to do until his blood is thickened, so we have to do a blood transfusion with plasma, and wait a few days. I have never been so angry, scared, sad all at the same time. How could he let this happen I was thinking, he knows the consequence of messing with the blood thinner. Last time he did that he got a blood clot and promised me he would never again let that happen. But, he was so sick, so I couldn't be mad right then. It is just so hard at times. I pray everyday for him to be healed completely. In the meantime, I am doing my best to stand by him when he needs me to be strong, and just to offer support and love. Don't get me wrong, we are fun together, and have great days, and do try to find new hobbies together, it just takes a lot more work. Thanks for giving me a place to vent.
03-19-2008, 02:19 PM
Lupus affects everyone, even those who don't have it. Spouse, children, parents...
So don't apologize or feel guilty for your feelings. I understand. I have Lupus and other junk and I am married. My husband travels weekly, but I know it affects him when he is here and even when he is away...
When your husband comes home and can be attentive to conversation I would tell him what you feel like when he doesn't take care of himself. How it hurts you, worries you, the stress and the anger. How his lack of decisions and his neglect of his health affects you too. His body, yes, but both your heart...heart of love, concern.. compassion. I think it is unfair to you and to him for him not doing the proper things to help control his disease.
Fear hurts like pain...stress hurts like pain. Unknown hurts like pain...please tell him you hurt.
I know it is hard Allry, expectations, dreams...poof..changed. We just have to learn to accommodate the disease. We are learning too, to build my life up, to find something new...we grief, but we must turn the grief into a positive and find a new way to enjoy life.
And too, you can still enjoy the things you use to...don't feel guilty just because your husband can't. Doing the things you love is important to your mental health too and your sanity. Don't give up those things...
I could never hold my husband back from anything...and sometimes even when I am not well I know it is just as important to grin and bare it and do something he likes. Put on a smile...take a pill and wing it. I hope your husband does that for you too...
I hope he does know how much he is loved and how lucky, lucky and special he is to have a wife like you. Very very special...because Allry you are...
Come here often...I understand it from all places of a disease. In it and on the outside looking in. We all do...
Come here, let me give you a big hug....squeeze.