new to this forum
I am new here. I wanted to introduce myself. I am currently going through a bad flare, those worst I've had in 21 years. I was dx'd back in 84 when I was 9. Had a kidney biopsy then and again recently a few weeks ago. The recent biopsy determined I now have organ involvement, Lupus nephritis type IV. Back in 89 I lost the vision in my right eye completely due to retnal detachment, side effects from plaquinlle. I am scheduled for 5 more of 6 cytoxan treatments, on 3 BP medications, 50 mg prednisone daily, vicodin, water pills for edema in the legs, ativan, prozac and two nausea meds for the cytoxan if needed. Whew! That's a huge glass of water now isn't it? I feel like a walking pharmacy at times.
anyway, I'm trying to stay in good spirts right now. I've gone through the depression, anger, denial and now I'm on to acceptance perhaps? I go through tons of emotions daily, man can such a high does of prednisone mess with you.
Posting on these lupus forums has been wonderful for me. My friends and family are all trying to be as supportive as they can, but they just dont understand fully. So I am greatful you are all here.
Ok, so that's the Lupus me, here's who I am with out the lupus.
I am a mother of two beautiful children, 19 month daughter and 5 month of son. Married for the last two years to a wonderful husband who is going to school full time and working full time, bless his heart! I love spending time watching my kids grow and learn new things. I try and cook, when energy allows, I love trying new foods, mmmm. I wanted to go to nursing school, but recent lupus flare has put that on hold indefinatly, maybe soon I can pursue that again. I'm currently out on a short term disability due to the lupus, uncertain when I can return to work. I have a lot of time so I research right now as much as I can about lupus and my options. I more I know, the more I feel better. I read this and two other forums everyday. I may not have the best advise or the right advise, but I am a great listener.
That's about it. I hope you are doing well, I'm working on it slowly.
Welcome to all the other newbies too!
Hi Cindy. I think I recognize you from one of the other forums that I also go to. This forum is great too and I'm glad you are here. You are right about everyone on these forums being able to understand exactly what we are all going through. You have a lot on your plate with two really young kids. I have 2 kids too, but they are a little older (four & eight). I know that my being sick has been pretty hard on them. Unlike you, I have only been sick for about 2 years, although I can now look back and see that I really haven't been the same since I had mono when I was eighteen. Fortunately I don't have any major organ involvement. I have had some protien in my urine at times and slightly elevated liver enzymes, but so far both my liver and kidneys do not appear to be damaged. I'm sorry that lupus has affected so much of your body. That must be hard to cope with sometimes.
Well, I've rambled enough. Take care and welcome to this forum.
Sounds like you have your hands full! I too am on Cytoxan therapy but for CNS vasculitis. I know it's hard to care for your family with 2 little ones. My son is 18 and in college so I don't have as much responsibility right now. Have had lupus like symptoms for the past 10 yrs but only since July was definitely diagnosed with SLE.
Take one day at a time and cherish your time at home!