I was diagnosed with Systemic Lupus in September 2010. I spent the entire weekend in the bed, depressed and throwing myself a pity party. Until I thought about it; I have never been a quitter; and I’ve always led by example. I was only 27 at the time and, you know, it actually felt good to know WHY my body felt like it was falling apart. I still don’t understand and I do sometimes doubt the doctor’s diagnosis. I’m scared still. I have young children that I can’t even throw a ball with because of my 5 shoulder dislocations (ortho says I’m too young to operate on). I also have bad knees, Raynaud’s Phenomenon, degenerative disc disease & hyper-elasticity of the joints…. I think. Or it may all be the Lupus. I have so many questions – but my PCP doesn’t want to answer. Just a prescription once a month for narcotics. I only recently began prednisone.
I WILL BEAT THIS IF IT KILLS ME!!! What makes me the angriest is that I am unable to do anything. This depresses me. It doesn’t help that my PCP wants me on disability. I’m not a quitter is what I tell him each time. I want to finish college & be a successful adult/citizen. I have anxiety problems which makes me not want to hang out with friends & recently have noticed a decreased libido. Which is very uncommon for me. My fiance’ isn’t excited about it either.
I don’t feel as if my friends are a support group. I just feel judged because of the pills I take. That’s not a good feeling. They all tell me I don’t need them or that they’re worried about me but, honestly, with the pain that I have that NO ONE else understands, I wouldn’t be able to take care of kids, home, dinner, etc. I need a positive support group. Anyone want to help?
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.