View Full Version : help please...just found out my mom has lupus

11-07-2003, 03:18 PM
my mom was just diagnosed with lupus. her life is constant go-go-go and she gets very little rest. I told her that she needs to stop working so much and rest some, but she is being very stubborn. she says that she cannot afford to cut back work (she works 7 days a week)

she also cannot take ibuprofin because of reactions and she refuses to take steriods.

if she does not take care of herself, can the disease become worse? is this normal denial for someone newly diagnosed?

what can I do? :?:

11-07-2003, 07:22 PM
Your mom should try to rest a little instead of pushing herself so much, especially when lupus patients are known to become fatigue easily.
When it comes to medication, please try to convince your mother to take them ,no matter what. The condition will only worsen if she does not take the steroids and the doctor might even increase the dosage. (happen to me, so best if she takes them)
Perhaps she thinks that taking medication or accepting the fact that she has lupus may disrupt her life, but if she does not take the steroids, it can really become worse. Life can still remain normal for us as long as we take care of ourself and take our medication.
Though steroids have a whole list of nasty side effects, not all of them are permenant and will disappear with time if the dosage is reduce, so she should not worry about that.
I would prefer it if she takes her medication instead of learning it the hard way like me, being sent back to the hospital because of a flare due to the fact that I did not eat my steroids for a couple of days. So, for her own well-being, I sincerely hope that she will do what is right for her.
Good luck :D

11-13-2003, 10:52 PM
Ok, I know what your Mom is feeling. It took a long time for me to stop working once my Lupus got really bad - over a year. I was dedicated to my job and did not want to lose that sense of importance and independence. I am so glad that I have stopped now, my quality of life is just so much better.

My father has Multiple Sclerosis and is in the same boat as your Mom. Even seeing how much it has improved my life, my father still refuses for financial reasons and because of pride. I did draw the line with his meds as he has an enlarged heart. He stopped taking his meds and it got dangerous. He is now back on them because we had a meeting together with his doctor. He saw the light.

All you can do is make suggestions and talk to her about how you feel and then the rest is really up to her. My therapist told me to stop trying to run my Dad's life and to worry about my own and she was really right. However much I love my Dad and think that I know what's best for him - which, is true - I can not make him stop working and make him do what the doctors say. It's the same with your Mom. Tell her how you feel and why and leave the rest to her.

I don't know the extent of your Mom's Lupus and therefor can't say, "Yes, she's going to get really bad" or "No, she'll be ok". I don't want to make that call. There are certain times where I chose to ride a small flare out because the steroids give me horrible side-effects, just horrible. My doctors agree with me. They monitor me closely and I am on plenty of other medication - 23 pills each day actually but her treatment is up to her and her doctor. Perhaps you can ask if you can tag along to an appointment to better understand your Mom's Lupus specifically.

Good luck