I belong to a "secret" group on FB that is for FSHD muscular dystrophy patients. Someone invited a researcher there last year, who all of a sudden came up out of the blue yesterday and said that she had heard from a geneticist treating a woman with FSHD who is pregnant with twins in my old town, and she wants to put her in touch with women who've had babies and can give her advice because she has no family to advise her. Can we please give her our contact info so she can send it to the geneticist to give to the patient?
I sent this lady a private message and said it was obviously L, that L is not someone you should just put into contact with strangers. I asked if since this was a "secret" group she would mind inviting L to the group so that L can ask questions for herself, as this is something that is going to go wrong for her and everyone who gets in contact with L privately. I also tpld her that she is treading WAY TOO CLOSE to the HIPAA line for comfort.
Well, she goes back and edits her request to eliminate the obvious identifying character of pregnant with twins in my old town, and writes to me and says, "I don't know who this patient is, and I don't see anything wrong with giving her people's email and contact info if they want to help. I'm not a doctor so I can't be violating HIPAA because this isn't my patient, and I'll do what I want."
Me, being me, got peeved and protective. I sent the 3 women who answered "Yes! Send her my contact info, I want to help!" a note saying that it would be unwise to let my daughter have personal information, and that she should contact one of the public support groups as a start, she'd get good information there. Two understood, one said she didn't. I told her that it was likely that L would at some point involve her in a legal action, and at the very least would ask for financial help. This woman chose to call me an f'ing b, and printed my private message to her on the public area of the secret board. Turns out she was more than a bit loopy. It was eventually all taken down but not until it had all been there for an hour or so.
I did contact the researcher's lab and tell them I felt it was inappropriate of her to go to a secret web page asking for private information to pass along to a patient of a colleague whom she had never met. Hey, I tried to tell her, but she didn't want to listen. Now she can listen from her boss.
There's a big mountain lion out of the bag, though, huh? I'm so lonely. Dont' get me wrong - if I were still in OR I'd be lonely too, and frightened to leave the house, and anxious about talking to friends who "had heard this or that - is it true?" Here I'm just lonely. I have no one. I know no one. We were supposed to go out this evening, but I canceled it because when we went out last week just after I learned that L was pregnant I ended up in a breakdown in front of the few people we do know. I haven't told a living soul here about our lives, and one of the folks we were with was so happy as he had just had an encounter with his son whom he had been estranged from for the past 20 years. Thankfully I had my sunglasses on and I think that only husband knew that I was upset as I grasped his hand as though he was the only thing that could save me from certain drowning.
I know I need to see a therapist. I honestly think that I would like to try Behavioral Modification ***se edit***. My pain is in the past for the most part. I need to let it go. But last week when I was telling someone about the pregnancy I found myself in tears over the cruelty that was my life the past 30 years. I hate that it defines me so much. I don't want to tell the story again but it's all so insane that I feel like I have to tell it so that it will make sense why I am so hurt. I feel old and I have serious health issues and I don't want to waste another moment of my life thinking about this. I feel like Lady MacBeth trying to wash out that ****ed spot, like I am truly broken. I can't even talk to husband because I'll just bawl and make him feel bad and there's nothing he can do.
Sorry. I know that this is just a pity party and that this is the life I live and the life I've chosen to live. I honestly don't know how I could have made it any better.
Edit - I meant "Cognitive Behavioral Therapy" rather than Behavioral Modification.
