So, I was just diagnosed with SLE and antiphospholipid syndrome less than a month ago by a hematologist (I know, why a hem? IDK). She basically said "yep, you have this, you have to cancel your surgery next week (was planning a hysterectomy), continue your aspirin and see me in 2 months". basically leaving me high and dry. I was in tears and not happy.
Now, I am a Nurse and am fairly well educated and knew to immediately call my neurologists (seeing him for recent migraines and TIA's) and my gynecologist. Long story short, I did have to postpone my surgery due to inadequate anticoagulation and a recent TIA episode (according to anesthesia, will not give general anesthesia within 3 months of the episode). Surgery is now in June.
I am angry... I am scared of another episode ... I don't know what a "flare-up" feels like yet ... I am so, so tired ... I have had worsening depression to the point that my psych has taken me out of work for a period of time ... I have no appetite... I feel like the Lupus is getting worse already!
The only good thing is that I have an appointment with a really well known Lupus specialist at John's Hopkins next Monday.
I really just need a pep talk and come encouraging words and tips about when you all were just diagnosed. What did you do to learn about Lupus?