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Title: How is it that I just found this site?! Post by CC_stole_my_Harte on Jan 31st, 2007, 12:31pm My name is Jamie and I have been a CH supporter for 4 years to my bf and soulmate Chris. Chris has had these horrible things since he was just 6 years old and he is now 26 (almost 27, don't tell him I told you!) The reason I found this site is because I was googling welders O2 since he just can't seem to get an RX for oxygen in all his 20 years with this disorder and I got fed up. But in the process, I found this awesome site. In no way am I happy that there are other people that have to suffer CH's but it's comforting to know there is someplace I can go to vent about our struggles with this. Anyone have any suggestions on how to get O2 since we are having a hard time? he is also now an independent contractor and is having a hard time finding personal insurance that will be supportive of his needs that is not going to cost $100-$150 bucks a month? I am just so tired of watching someone I love so much suffer like this. I am tired of waking up in the middle of the night because he is in the shower again with the heat all the way up (that's what he does) and hearing him wimper and bang against the tub floor. I am tired of not being able to do anything and I will do whatever I can to get him some O2 if that mean sI have to hold a doctor at gunpoint while he writes that f'ing RX. That wasn't supposed to turn into a soapbox, but i do get emotional over it, so I'm sorry. I'm not really a nut yous guys!! :-[ Jamie |
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Title: Re: How is it that I just found this site?! Post by Guiseppi on Jan 31st, 2007, 12:39pm No you're not a nut you're a saint for being a supporter. Someone will be along shortly to explain how to rig up a mask to welders oxygen. Start reading up on the left as to some of the cheaper treatment options and continue your push for oxygen. It's a life saver for me. Then visit the supporters section of the board. There are many more saints like you that keep the sufferers sane. They can share their experiences for you. My wife found this board for me, thanks again for everything you are doing for him!!!!! Guiseppi |
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Title: Re: How is it that I just found this site?! Post by Mattrf on Jan 31st, 2007, 3:19pm Welcome to the board, be sure to have your boyfriend join us as well, this site was a life saver for me and the enlightenment of coming here and finding out I am not nuts and I am not alone was a feeling that can’t be described. This place has simply the best people ever, come her as often as you like and vent till you can’t vent no more, and give others support as well, we all try to help each other and the amount of knowledge and love here is incredible. There is also something called a clustermask for O2 that one of the members make and sell and it is said to work much better then an over the counter non-rebreather mask so hopefully some one will give you the info on how to get one soon. Also if his neurologist is not so great witch is what it sounds like since he will not prescribe the O2 then print up as much from here as you can and take it to him to help educate him about CH, most people her do that exact thing since most neurologist just don’t seem to know enough about CH. I am sorry you had to find us but glad you did and I know your boyfriend will be amazed after you show him the site. Matt |
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Title: Re: How is it that I just found this site?! Post by georgej on Jan 31st, 2007, 5:01pm Tell him he's no longer alone with it, if he chooses. We--his family--are here for him. And Jamie? We celebrate our supporters here--they're the difference between life and death for many of us, and the strongest people we are honored to know. Be sure to visit the supporters board yourself--you're no longer alone either. Best wishes, George |
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