Osiyo (Cherokee hi) from new member, Awi Usdi (Little Deer)
Osiyo, everyone. I have had Lupus and Sjogren's Syndrome since (at least) 1989, and have come to the point where I am nearly entirely isolated, lonely, and beginning to become deeply depressed. I've been an incredibly busy woman all my life as an Artist, a mother (single), a member of a large group of friends (all of whom have jumped ship). I was fit, strong, a traditional Healer and Midwife--and now I live in pain, exhaustion, and even require Morphine to deal with the pain that the lesions cause (people with Sjogren's often get internal lesions, in addition to the external ones from Lupus, and because they are internal they can't be reached to be healed).
I do not generally indulge in self-pity, as it's useless and counter-productive, but may I take a minute to say how much I HATE this!!??!! I hate that I'll never have my life back, even though at first, after my dx (in 1998) I remained completely calm and centered. That centered-ness has definiely fallen apart at this point, and the Morphine has made me disinterested in my own (now empty) life. I'm not addicted, but I have found that not only does it kill the physical pain, but it makes my emotional pain less, which is scary for someone who believes that the only way to grow is to feel everything deeply, even pain.
I am now a painter, having been forced to give up filmmaking and midwifery, as both are much too taxing. I know my friends all loved me, but chronic illness is too much for most to handle, and though I myself, as a Healer, would never have deserted any of them, I genuinely do understand their inability to cope and don't blame them. It takes a particular personality type to remain friends with someone who has become unreliable due to such problems as exhaustion and memory loss--and who wants to deal with the panic that can come with a pain crisis? Right now, in American culture, we ignore our sick, our old, our physically or emotionally handicapped. I don't live on a Reservation, where I'd be surrounded by loved-ones, so I'm on my own. Not even any family.
I've come to this site to try to get out of my doldrums (dull-drums!) as I have now bored even myself beyond bearing!
I'm looking forward to talking to, emailing, chatting on-line (is there a live chatroom? haven't finished exploring yet), and if I find someone in my neck of the woods, perhaps even telephoning or eventually meeting. And I want especially to discuss non-illness-related topics, so please think of everything you're interested in and let's talk, no matter how esoteric. PLEASE! I'm starved for intellectual stimulation.
I hope someone will want to talk to me--I'm actually an interesting person with genuine wit and humor. It's just gotten to where those qualities have disappeared underneath layers of illness and pain. I'm ready to rescue myself, and would be grateful to find an outreached hand (or even more than one!) to help me do so. Thanks, and I'm glad to have found you all.