Just diagnosed Thursday and had my first IV meds of Steriods
My name is Amy. I am 28 years old. My aunt has had Lupus for about 4 years now. I see her suffer day in and day out. Her sickness, ups and downs. When I started having problems for the past year or so she told me to go see her doctor. Imagine my suprise when he looked me straight in the face and told me I have Lupus. I always thought it skipped a generation but I guess not. He stated the Lupus has attacked my brain. My brain is swollen and some of the blood flow can not get to certain areas of my brain. I am terrified. I was by myself. All I could think of was I dont want to suffer like my Aunt. I have young children they cant see me like this. I went from crying my eyes out to being in shock. He told me I need to come back today (Friday the 16th) to start a series of IV medicine of steriods. I cant quite remember the name of them. I just know it gave a metal taste in my mouth. I have pretty much felt bad ever since taking it. I have to go back Monday and redo this again and Tuesday go back to the doctor. Everything is going by so fast I just dont know what to think or do. Please give me some advice. I still dont believe I have this. I cant. Everytime I think about all I do is cry. I need some support and I hope this group can help me.
Thank you very much
Oh Amy, we're here foryou! What a difficult and frightening time you are facing at the moment.
Like you, many of us have gone through treatments and extremely difficult times - and are here to tell. Your aunt is problby a good source of strength for you, someone you can bare your heart to and she will understand fully. If you have an Employee Assistance Program at your work, ask them for support - or the local lupus support group if there is one nearby.
Your children still have YOU. That you're not feeling well, they'll adapt and learn that life is full of mommys who are each very different. While you may not chase them around the block, you can listen and be near them, nurture them in different ways.
Many gentle hugs, dear, and keep posting - I think you'll find many friends and much support on the board. Invite your Aunt as well!