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Diagnosed with Lupus.

Posted by on Jun. 2, 2014 at 7:24 AM
  • 4 Replies

I have been tested for lupus and my doctor says one test for him is enough to believe I have the disease. I am a first time mom of an 11 month old and I'm now 42. Fatigue is unbelievably I don't have the energy to lift my arm at times...and the aching joints is second to the fatigue. I hate it. I am being sent to a specialist to get more tests to MAKE sure and get medication. I spent 20yrs waiting to be a mom and now I'm so tired all the time Its so hard to run after an 11 month old who's going to be walking soon. My partner works nights which helps alot because our son is usually in bed and I can rest and he is home during the day to help with our son. A huge help. But I am clean freak, first time mom and i want to be there for my son, i want the energy to do whatever my son needs and clean my house when I need too. I want to be able to take my son to play groups, and parks swimming and visit family, I also have depression/and or postnatal depression (as lupus patients) can have depression from the symptoms. I hate not being able to get up in the morning with a bounce(as much as someone at 42 can bounce) and get my son and be happy energetic and enjoy his beautiful morning hyper moods. I hate that I have to stay in bed while my partners get our son...and wait for 30-60mins before I can even more from the morning stiffness and tiredness I always have. It's horrible.. I have never been one of those lazy people, my house work is always done(used to be always done) I used to be organized, efficient and couldn't wait for my son to be born so I could do all the things a mom does. Now I'm having to nap during the day for at least an hour and not be playing with my son, or cooking dinner.. it's depressing not being able to be a mom. My son is so happy so alive and so excited about everything...and loves being on the move. :( So hard and I feel like a lazy mom... the medications they give lupus patients can cause blindness and I am so scared of not seeing my son..grow up. I don't want to take them but they are supposed to help fatigue pain, rash on the face. It's a catch 22.kinda... Does anyone here have lupus and know what I'm going through? I would really love to talk to someone about it.

by on Jun. 2, 2014 at 7:24 AM
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Replies (1-4):
foxfroggy
by Member on Jun. 4, 2014 at 4:08 AM

I've been living with lupus for 46 years. Does that help put things in perspective? Not all.medications cause blindness, there are many other options now including drugs explicitly for lupus. For many years I got by with prednisone and/or aspirin. Be honest with your doctors about your symptoms and your fears, and educate yourself as much as possible. Join the Lupus Society and take advantage of their resources. When I started this journey there was no internet and the first book I found called lupus a usually fatal disease. Not any more, not even then. Yes, you will have good and bad days but remember that everyone does! Take hope and don't let a diagnosis define you. Baby yourself when your body makes

you and celebrate when you are fine. Let me know if I can be of help.

suetoo
by Member on Jun. 4, 2014 at 7:37 AM

I was diagnosed with CNS lupus in 2005. I had to retire from a job I loved 3 yrs ago because of it. I also have APS and arthritis and asthma, all connected to AI disease. I go to an eye dr every year for a plaquenil check and take prednisone 5mg every day. Tell most women with lupus about the unrelenting exhaustion, the unquantifiable horror of needing to do something and not being able to...we know. I saw a Neuro for my nerve inflammation and he prescribed neurontin. These three meds let me have a life, they help me immensely. Unfortunately, I'm afraid you'll need to learn...if you do this, you won't be able to do, that. It's a balance between rest, (I'm in bed at least 12-14 hrs a night) and energy expenditure. If I go shopping, the next day I'm forced to crash. Literally. Read 'The Spoon Theory' and check out the Lupus Foundation of America. They were a wonderful support for me in the beginning. I'm a nurse and I was still overwhelmed. I'm on retirement disability and SSD now. Take care of yourself so you can take good care of your son. Obsessive house cleaning is a no win situation. God bless.

amonkeymom
by Gold Member on Jun. 4, 2014 at 4:17 PM

I'm glad you're getting a second opinion!

rockchickmom
by Member on Jun. 5, 2014 at 6:02 AM

Oh thank you so much ladies. I have read the spoon theory BEFORE I found out about lupus and i said that's exactly how I feel. I hate the fatigue most of all. I'm not used to having to rest I've always been someone who gets things done. I live in Australia and I'm on a few sites about lupus. I've found out my elbow pain is a torn tendon NOT lupus inflammation and my doctor says it could be september before I can get into a specialist so i need have to deal with it as I have been since having my son 11 months ago. I'm not used to sitting on my ass when things need to be done so that's going to be the hardest of all. The rash I can cover with make up, the aches I have reasonably good pain meds at the moment. I have an 11 month old son so I'm very angry and upset not being able to jump out of bed and play with my son most mornings. It's very hard after waiting 20yrs to be a mom.. the first thing I read about lupus was five yrs life expectancy so I freaked out big time and my partner had to stay home from work because I was in bed devastated and crying. as I calmed down and read more I found it was treatable and have read and researched a lot of things since. I'm still scared but I'm  coping with it. I worked out if i go shopping one day I'm exhausted later that day and the next day. I am in the *remission* stage and have been for about 2-3 weeks...which has allowed me to get things done. My partner works nights and is home to help me during the day with out son. I'm just wondering if my elbow is a torn tendon and not inflammation lupus...what that means. I have had a positive test etc.  but now have to wait until sept to know anything more..which is frustrating.

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