Hello, everyone.. :)
Yes, I have Lupus.
I am very busy single mom, who has been diagnosed SLE for 5 years. I never thought of seeking support because my schedules are always busy. No time for anything else, but try to do what I can for my kids even with my Lupus. Until recently, my job has became very difficult for me. Since there is not much work, and my dept only has 2 people left. I think my company is trying to make us resign without closing the dept. I have been working there for 17 years and I don't think it will be easy for me to start something new since in these recent few months, I found my memory is getting worse and few times I felt like I was inside deep water, missing oxygen, my brain went blank for few seconds... beside I am already very very tired, I don't have energy and strength to learn. I hope I don't have depression... in fact, I feel wanting to cry all the time. I just need min 5 more years, after my daughter finds a job and my son finishes his pre-university. The rest I have arranged. And I can quit... When I return to work after 2 years disability leave, my company supported all my monthly routine check up and blood test... in fact I am much stronger than before, even I don't look sick, but they can't see I still have my stiffness in the morning, and I still have my joint pain if I don't have enough rest (sleeping).. I have been migraine since few months ago and I am very sensitive to light and noise... just they can't see it.. I always put a smile on my face all the time... Now whenever I need to request off, they ask me to get a doctor's note or consider me as absent. etc etc... I am done explaining. I am going to stay at work as long as I can...
I am sorry.. for my bla bla bla...
Hi, I went the single Mom route. After reading what you told us, I know it's hard for you. You may need another five years, but your body might not be able to handle that. I know that the more you push yourself the more stressful it is and the harder it becomes.
Plan as though you don't have those five years but keep going.? Try your best and remember your kids love you and life without you might be harder than a life of hardships. Think and plan for those five years carefully. I didn't plan well. I just tried to get through today and now have to rely on my family.
I was very emotional that day. I feel better now. I do what I can, the rest I leave it in the hand of God.
I do understand my health should be more important. 5 years for people like us is long time. However, right now, my kids need my support. At least I want to work to pay for our expenses. I wish God listens to my prayers, let me stay strong.
I have planned for the worst. I believe everything should be ok. :)
It is hard to work for jerks. I hope things will get better for you.
I know, how hard working is, I still work full time and some days I don't know how I am going to make it through the day, because I am in so much pain.
Right now I am somewhat ok, because I am on Prednisone. But I am tapering down and can feel the pain coming back.
Whenever you feel down, come here and talk to us.
Sorry to hear your life is so complicated at the moment. I feel that I always had to push myself because of my children. Now they are almost independent it's not such a constant balancing act, but I'm not sure if I feel better for it...carrying on in a blurr seemed to give me purpose!
Have a good day
Oh I so understand where you are coming from. I am a single mom and when I had to go on disability I wasn't sure we were going to make it. We lived on $300 a month for about 8 months (yes, hundred). Like you it is all about taking care of my daughter and guess what? We made it and you will also, Some days I woke up not seeing any light (and I still have those days) but there always is. One thing about us Lupus patients is that we understand "one day at a time" because we tend to judge how we feel that way. You will make it through this difficult time at work, one way or another. We will be here to support you as you do.