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1. If your new or a lurker what is your name? Brooke
2. How have you been doing? I have alopecia totalis. (total hair loss on my head, one eyebrow and spreading)
3. How long have you been posting on JM? over 3 years
4. What other boards do you post on? Dec 05 playroom
LOL well hello.... "I'm Sara, host of AID board.... blah blah blah" (lol this is my SIL everyone so I don't think she needs an intro from me)
I've been trying to get the Parents with Disabilities Board up and going, but as you know and can see I've been super busy and barely keep this board going. Maybe we could team up and get them both going (wait, what Sara and Jenna team up) for those who don't know (which is like everyone on this board) Jenna and I have had our fueds iin the past. But lately we've have really gotten along well and mended some VERY broken fences!
Anyways. I heard about your losing your insurance. I know how much that sucks, when I lost mine for the first three months I had this job it cost over $300 a month to get my meds, and that was just the HAD to haves, not all of them. And even now, to get ALL of the meds the DRs WANT me on still costs about that much a month. Maybe when Obama gets into office we can finally get some relief.
Try and post an intro post if you have time soon, so everyone can get to know you and a little more about your situation with Narcolepsy. I know at one point you where going to journal about it. Did that help? That is something free.
Glad to have you here. Wow us on a board together, this could be trouble
Maybe we could team up and get them both going (wait, what Sara and Jenna team up) for those who don't know (which is like everyone on this board) Jenna and I have had our fueds iin the past.[/b]
Try and post an intro post if you have time soon, so everyone can get to know you and a little more about your situation with Narcolepsy. I know at one point you where going to journal about it. Did that help? That is something free.[/b]
It does help, ALOT, to clear your head. But, I haven't had time here lately to keep up with it with everything that has been going on, kwim? I found a TON of info just this morning about the HLA complex and a possible "cure" for narcolepsy and other AID's with the help of essentially taking the immunities that are 'supercharged up' from other paitients (white blood cells from both humans, pigs and SHARKS LOL) and trying to create a medicine that will booster the immune system and correct some hypothalamus (sp?) gland malfunctions in AID and Narc patients. I am hopeful, but for now I guess I will just enjoy the benefit of my weight loss from the meds I take. I needed to lose a few (ok so like 70 lbs) and 50 lbs so far is fabulous!! But I plan to start journaling again soon on my live journal so I can keep my myspace blog for other things.
Glad to have you here. Wow us on a board together, this could be trouble [/b]