Newly diagnosed

sbesh81sbesh81 Member New Member
I was diagnosed with Lupus after years of random and weird symptoms that could not be attributed to anything else. My mom has RA and my son is a type 1 Diabetic so I wasn't surprised to find that I too have an autoimmune disease. What I am struggling with is the lack of mental clarity. I am a student, so reading and writing papers is how I used to spend much of my time. Now, I can barely read short texts and I struggle to comprehend what they mean or the ability to be able to accurately type out my response. Even now as I type, I am struggling. Yes, my body hurts. Yes, I have a rash on my face that won't go away. Yes, I can't breathe sometimes. That is not what bothers me the most. I am upset that I feel like my mind and the mental abilities I have come to rely upon are leaving me. I am grieving this loss and wait for moments when the fog clears just a little and I feel like my old self.

Comments

  • JudyTDJudyTD Member New Member
    Were you diagnosed with Systemic or Discoid?  I spent years going from Doctor to Doctor until I found a Physician who actually tested me and discovered I have SLE.  I never had a rash, and that confused the other physicians I consulted.  Yes, I grieved for the loss of my good health, and that took over a year.  I also have found that my symptoms can change from day to day, from week to week, from month to month.  The "fogginess" comes and goes - for me.  I find that when my SLE is at its worst I have memory issues, nothing severe, but I have to struggle with names and content when I am reading.  I just ride out the bad days, try to focus on the good days, realize it could be a lot worse.  I was diagnosed in 1983.  My biggest problem is fatigue, but I have learned to say "I can't" when asked to do something, and I do know if I push myself I will suffer for it.  Be kind to yourself - that's rule #1 for me.
  • aileronsailerons Member New Member
    I am brand new to Systemic Lupus. Just diagnosed February 2020. I am still having active lupus right now and trying to be stabilized on my meds. I have been very ill since January, in and out of ER 3 times and battling a terrible respiratory illness (not Covid 19) at the same time. It has been an on-going issue for the past year and half, with a bad diagnosis from a dermatologist giving me wrong medical advice. I was a marathon runner, fitness teacher, and Mom to a 12 year old boy. Most weekends, toward the end of fall 2019, I found myself in bed, crying from the discoid rash that was all over my body, extreme fatigue, headaches, I was an emotional wreck. And I had no idea what was happening. The doctor just kept saying it was some sort of "rash". I knew something was really wrong. I lost weight for some reason, my appetite was way off. I looked awful. Finally, after a biopsy of my arm, It came up Lupus. I knew I wasn't crazy. Now I am on Prednisone, Hydrochlorquine, and Benlysta injections. My life too, has changed profoundly. I can barely move some days. Lie in bed other days. It is like living in a nightmare you don't wake up from. I am learning my new normal, and hoping that the meds will one day help me get back to some sort of life I had before. 
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