I'm sorry that you're having such a tough time with your lupus. The ups and down's of this disease can be so big at times. We all certainly understand what you're going thru with it.
I think Lynnwood made a great suggestion, if it is at all possible changing your working shifts would be a big help for you most likely. Another help would be to move to a less stressful environment the ICU is a stressful place to work. I know many nurses love working there because of the high energy, but all that energy and stress ISN'T good for your lupus. It's possible to make adjustments w/o having to totally give up your career.
As for having children, while the medications that you are currently are on, you may not be able to have a baby, that doesn't mean you won't come off them. We also had a member here who did take cellcept I believe while she was pregnant and did fine and had a healthy baby.
I started having symptoms at age 17, I was 22 when it was mentioned I might have lupus. I had many up periods where my health was good, and a lot of down periods where it was terrible. I managed to have a child at age 28, I had been married 8 years and had gone thru a lot physically to have her. I did very well thru the pregnancy, it was after her birth that I became ill.
My hubby was in the military and received orders to Italy. We were not allowed to travel there with him until he found a place for us to live. This base had no military housing, our daughter was 3 months old when he left she was 9 months old when we arrived. I was working full time, going to college full time and taking care of a baby on my own. Needless to say, I was in a terrible flare by the time we arrived in Italy.
Our whole tour in Italy I was desperately ill, I had no help and was sick as a dog. Once we returned to the states, we learned our daughter had a learning disability, and I devoted every waking moment to her care. Again, I'm sick as a dog from all the stress. When she turned 8 I was finally DX'd with lupus and they began treatment. I have to say for maybe 3 years I did pretty well, then I began to slip down hill. I've never been the same since.
Now, I'm sure you're wondering why I'm telling you this. I believe that I'm so sick because I was left untreated for 13 years. You however, are being treated and I truly believe that if you want to have a family you'll be able to have one. Please don't rule it out, make an appointment with a high risk OB and see what they have to say. Talk with your Rheumy about it, until they tell you it can't be done I wouldn't give up that dream.
One thing you do have to deal with is there is a possibility that you might pass this on to any children you may have. I would make sure you reconcile those feeling prior to having a baby. My daughter not only had the learning disability but she's struggled with a positive ANA of 1:640 and joint pain since she was 7. She does not have lupus, but she does struggle with joint pain and such. As for her learning disability I can't say it was caused by the lupus, but I do know that there have been several ladies post here whose children have had the same disability. Is it related to the lupus whose to say.
If you have the help you need when you have your kids I think you'll do great. Who knows, maybe if you have kids you'll want to give up your job. I stopped working full time once my daughter was in the 1st grade. The only down thing I have to say about my experience with my daughter is, she has NO memories of me being well. I became so ill so quickly that she doesn't remember me being the cookie MOM for girl scouts, or the Volunteer Coordinator for the Elementary School. She's handle things pretty well, as she's gotten older it's become harder. I missed her high school graduation, she found me unresponsive 3 days prior and I was on a vent in the ICU for her graduation.
She's in her Junior year at college and I'm praying that I'm still alive to see her graduation in 2015. She can be upset at times that my Dr's don't keep me comfortable enough pain wise, but she copes with it. IF, you had children and anything like whats happened to me, happens to you,, you and your hubby will handle things beautifully and your kids will understand. You just have to think positive and ask the questions, don't be afraid for hearing the answers.
As for how do I go on, well....... I have some very hard days. I just finished up radiation on warts that I've had on my thumbs since 2001. I now have radiation burns and my thumb hurt like the you know what, I've got two broken ribs, a very sore back, a terrible case of tendonitis in my feet, and my LGL leukemia seems to be kicking my rear end right now. Do I feel like giving up, you bet I do, it's NOT FAIR that I have to live like this at all. My pain is on a scale of 1-10 at a solid 8 I'd say at least 78% of my time, the rest maybe a 6 or so.
It's important to me to show my daughter that NO MATTER WHAT, you don't quit. That even when things are going bad and you are so sick that you feel like crawling into a gutter, there will be someone somewhere to help you out. I see a therapist weekly, I take prescribed pain meds on a daily basis, I try to limit the amount of stress I'm under and just plain and simple just try to make it thru the day.
I'm sleeping a lot right now, as my pain is so bad right now, but once I'm feeling better, I know that I'll be able to enjoy the things I normally do. Please, keep coming here are talking to us and know that we care and will listen always. Think about adjusting your hours, and maybe changing wards. Maybe think about a therapist to help you thru this as well. I know it seems NEVER ending and I HUGE blur on a Flare, but give it time, there are so many folks that have come here that get better and do great.
They don't always come back and let us know how they are doing, but I do know that Lynnwood is a prime example of taking her medication and pulling out of a terrible spot. I know she's off her medication and that's so fantastic. This could happen to you, try to be positive and think that things will improve and you'll be off your medications soon. Wishing you the best and I'll keep you in my prayers.
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.