Posted 9/28/2006 8:37 AM (GMT 0)
hi, i have had chronic hives and HAE for 10 years now, i have been to mayo and colombia and lots of doctors, and no-one has been able to help me.. when i turned fourty i had my teeth pulled and 3 days later BOOM hives, and they have never went away.. i have them bad 24/7 and the swellings on top of everything,,, my airway closes on a regular basis. i am getting ready to go into a clinical trial..but it is only for the HAE, not hives,, sometimes meds would work but after awhile they stop,,, i suppose it is finding the right formula, they run me insane, but i have learned to live with them, now they are a part of me, and my life i guess forever. there is nothing i can do about it, i try to live my life the best i can, i think the most thing that bothers me the worst is the some of my family just doesn't belive me that i am sick, because i stay home when i am real bad, and the others are scared of me, like i have AIDS or something,,, but i have even learned not to deal with them anymore either. i came to the point of giving up, then my 7 year old grandson started having troubled with the same thing,, so now i am inspired again, i don't want him to suffer like i,,, he can't handle it, i am almost 50 and i can't hardly do it,,i am adopted so i wouldn't of known if this ran in the family or not. all the doctors i have been to and i still do not know what to really call what i have or why i have it?? i had a doctor once wanted me to try a med that wasn't legal here, only in france, but comeon,,i have no money to go there, and get meds,,,its crazy... probably wouldn't work anyways. i don't mean to sound hopless, but isn't it? i mean after so many years, u just have to go with it, right? i try to think ooo it could b worse,,whatever it takes to get me thro another day of it... waking up in the mornings is like a new world,, where will i b inflicked today? what is hurting this day... i can't even make plans.. my mother will ask me,, will u take me to the mall, thursday,,? haha i say well if i feel up to it on thursday, cause u never know,, and she doesn't really get it,,i am just frustrated,,,frustrated to the max,,, i am at the point that i just want people to leave me along and let me sick, and stop acting like i am normal, cause i am not,... well, felt good to vent, i wish u all luck,,, JO