Hello, I was diagnosed with lupus last September but probably had it for at least 11 years prior, my first high ANA was in 2001 and I also started with arthritis back then. Over the years the symptoms have increased including a stroke in June 2008 and, starting last summer, the dreaded skin rash from being in the sun though it's only on my arms and chest, not my face. I live in Southern California and have always been a beach girl, love the pool and swimming, and lived in Florida for 18 years where we spent every chance we could out in the boat. Now the sun is my enemy.
Now ... life pretty much sucks but I really can't complain to anyone in my life because I don't look much different. I broke my foot when I had the stroke and go SO MUCH attention from having a cast on my leg and that never even hurt one bit! I suffer with constant headaches, pains in every inch of my body, but because I look normal, everyone in my family acts as if I am only seeking attention (which is laughable because they shun me, they don't give me any attention), trying to get out of work, or some other imagined incentive. I have learned to live with the aloneness but there are days, like today, when I just can't help but cry.
I think the worst thing is when I read here and although many of you suffer with even worse issues than me, my husband did not stay by my side. There were many mornings that he physically picked me up and carried me into a hot shower where I sat huddled, allowing the hot water to pour down the top of my head; we spent long hours in the ER in the middle of the night; there were seemingly endless and expensive doctor visits where they shook their heads and could not give me an answer until finally, my husband started seeing another woman and we divorced. That was worse pain than the lupus could ever cause me and yet indirectly it was because of the lupus.
About that time my only child (grown) moved back to California to be near the rest of the family, so I decided it was pointless for me to stay in Florida alone, so I moved here too. It was here that I finally got my diagnosis. I've had supermarket clerks and complete strangers in doctor's waiting rooms show such compassion and kindness if lupus comes into the conversation that it's all I can do not to burst into tears at why my own family does not show any at all but rather they are judgement and tell me I just need to "take and aspirin" or "take a walk and stop thinking about yourself" or "I get sick too but I don't let it keep me down." I am not one to sit in the corner and complain about how sick I am; I do just the opposite because I don't want people to feel sorry for me but it seems that none of them even care enough to type "lupus" into Google to find out what I'm coping with here. It just makes me sad that I went from a happy woman and homeowner who worked hard and had a garden and went camping and boating with the love of my life, to a pathetic woman who lives alone in a dark little apartment and really has no one who understands. Or apparently cares enough to understand.
Thanks for letting me vent. I figure that if anyone would understand, it would be you folks.