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lupus and personality change

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Posted 1/3/2009 4:24 AM (GMT 0)
My wife was diagnosed with Lupus over 3 years ago, she had aseptic meningitis and transverse myelitis which caused paralysis from the waist down.  After Chemo, prednisone and rehab she has made a full recovery. Praise the Lord!  She has been tapered off the prednisone for over a year and a half. Now she only takes plaquenil and a baby aspirin. She just graduated from nursing school, passed the boards and landed a position in a competitive ICU program. She was having a hard time with all the extra meetings and personal study that was required. She has always been very competitive and took pride in being in the top of her class.  I could tell she was stressed and wasn't getting the rest she needed to function. I wanted to tell her to quit but I knew she really wanted this job. One night she came home worn out and on the verge of tears, the instructor during a long shift told her that she did'nt think she had what it takes to be in the ICU, but not to worry "They would find a place for her".  She decided on her own to quit the program after that night. My wife has always been a very loving and affectionate woman in our 11 years off marriage, but since that night she has become quiet, distant and draws back from me.  after a week of this I asked what was wrong and she stated that something happened to her during her time in the ICU program, she's not sure of our marriage now she does'nt feel the same.  She says she loves me and it's nothing I did but she's not attracted to me anymore. We have been going to counseling and the counselor has told her that she is in a major depression, but she does'nt want any anti-depressants.  She hardly talks to me anymore, just answers my questions. When we go out she acts "normal" to her family and friends. But not to me. I called her doctor who hasn't seen her in almost a year and he wants to examine her, but she tells me she is fine.  She never had the facial rash when she was sick before and she does'nt have one now, but she has lost weight and looks tired. Other people have commented on her tired look. When she had Transverse myelitis 3 years ago the MRI also showed a spot on her brain.  Am I just kidding myself or could this be related to Lupus? She was a great loving wife for 11 years up until that night and now we have been going to counseling for 3 months and she still is the same.

Please help me!     

Posted 1/3/2009 4:46 AM (GMT 0)
How is it that she is still taking plaquenil if she hasn't seen a doctor for almost a year? Does she have her blood checked every few months? Maybe you could make an appointment with her doctor and go in and talk - he/she should be aware of what is going on. Can you have the counselor send over any records to your wife's doctor? I am sure that others will come along with more ideas - but I wish you luck and strength.
Posted 1/3/2009 5:03 AM (GMT 0)
Thank you for the question.
She has been doing so well for the past 2 years that the doctor only ordered one blood test last year. The reason she hasn't seen her doctor/Rhematologist is due to her moving her appointment for school and vacation. She called in for a refill prescription. I did call her doctor and he had his staff call her to move her appointment from the 30th of January to the 6th of January. She does'nt know I did this. The doctor told me anything is possible with Lupus but that it would be a rare symptom. I just hope she is not getting sick again. If it's not the Lupus......
Posted 1/3/2009 7:19 AM (GMT 0)

Hi Lespaul, Wow sounds like you two have been through alot together. You said the dr. said it would be a rare side effect? I was wondering what would be a rare side effect? Depression? Because depression is a huge problem with lupus I think most of us are taking some type of anti depresssant or seeing someone. Not only is it depressing to know in your mind that you have a lot to offer but your body has you trapped it also causes very real physical reasons that attack your body that causes depression. Your adrenal glad is one thing. if it's out of wack from the lupus it can cause depression and extreme tiredness. Some people do lose weight. But usually there is a weight gain problem because of steroids and less activity.

I don't think I would take what she said right now to seriously. It sounds like she is suffering from depression and you are the one she loves the most and feels safe pushing you away. Unfortunately you can't force her to get help. You can be supportive and help her if she's having a rough day but if she needs a dr. she needs to be agressive with her own care.

Maybe you should try some counseling on your own for a little while. You can't ignore your own emmotions fears concerns. Care givers have a tendency to put their loved ones first and than they wind up being sick. Try to take it one day at a time and don't worry until you know there is something to worry about. Lupus can cause problems attacking the brain as well. Maybe the dr can get her on something to get her feeling better. Get another CT scan see what's going on there.

You're both welcome to come here any time with questions and fears or whatever. There are a lot of great people here that are very supportive. By the way that was me you read about with the lung problems and said God bless. I just wanted to thank you for that.

You and your wife are in my prayers let us know how it goes with the dr.

hugs carol

Posted 1/3/2009 12:05 PM (GMT 0)

Hi Lespaul and Mrs. I also think your wife has major depression. She fought to get her health back after paralysis. Then she worked as hard as she could for that ICU job, no doubt thinking that she could conquer anything, and it just wasn't enough. Lupus causes such terrible brain fog and we often can't concentrate. For me the worst part of lupus was facing my mental and physical limitations. I have a bachelors in medical technology and I had to resign from a rewarding, high paying job. As for your wife, one of the most common signs of depression is withdrawl from human contact. I hope that as a nurse your wife will understand that she is depressed and has situational anxiety. This is important: Ask her if she has thoughts of suicide. Also ask her if she has a plan on how she would like to commit suicide. If she has a plan, she must see a doctor immediately. I know talking about suicide will be hard for both of you, but it often helps to get the topic out in the open- I know this from personal experience. Of course I hope she hasn't reached this point. Finally, Carol gave great advice that as a husband and caregiver you would also benefit from counseling. Please let us know how you both are doing. Love, Butterflake

Posted 1/3/2009 1:54 PM (GMT 0)
The thing about depression and Lupus is this-right after a person is diagnosed they are usually relieved to know what it is that is wrong with them.  They start researching this disease and getting treatment and remaining so positive that people really look up to the way they've reacted to having such a nasty disease.  They've got all the support in the world from friends and family.  Give it a year or 2 and they've experienced alot more than they ever thought they would with Lupus.  It really starts to build up and so do the feeling of hopelessness-also you are no longer in shock about having Lupus, so you begin to deal with a whole other list of emotions that didn't really come through right away because you were so busy getting to know your disease and coping one day at a time.  By this time you thought all those bad feelings would be gone and your body would be feeling better because of treatments and the only definete thing you have everyday is those meds-which make you angry because you thought you'd be done with them, or that things would be easier.  And, as someone mentioned earlier you have so much to offer and your body is causing a major roadblock in the kind of life that you really wanted to have. 

 

This may not be all Lupus patients, but it's alot-trust me, I've been to counseling and this is what we discuss.  I agree with the person who said maybe you should go and talk to someone, it will help you understand and cope and maybe your wife would like to join you once you convince her it's not something to be ashamed of, and really it takes a huge burden off of you even just to get those feelings out in the open so you can deal with them one by one and pretty soon they'll be gone. 

 

I really hope the best for you. 

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