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        Supporter's Corner >> Supporter's Corner >> Nobody Listens!
        
(Message started by: Becca on Feb 24^th, 2002, 9:58pm)

Title: Nobody Listens!
Post by Becca on Feb 24^th, 2002, 9:58pm

Except you guys, of course......... ;)

I had another of those annoying experiences of trying to talk to someone at work about Bill's CH this week. It's so impossible and frustrating to explain somtimes, that I don't even try most of the time. As you know, everyone "had one of those once."

I'm a nurse - you would think I could find a co-worker or two who knows what I'm speaking of. Kind of scary, huh?

At least I can report that I've had (just) two occasions as a nurse to care for CH sufferers. I was glad to be able to advocate for them with the medical and nursing staffs, and provide support for them and their families from some kind of personal knowledge base. I think that helped some, and that felt good to me. So often in the past Bill and I have both felt so helpless to do anything useful for him during these things....

Title: Well, Becca.......
Post by KarenT on Feb 25^th, 2002, 11:39am

I know exactly what you mean. I'm an ER nurse and CH supporter. :)

The folks I work with are probably tired of hearing about CH but I don't really care. LOL I just keep on and hope that some of it sinks in. Even gone to the lengths of "borrowing" the ER docs computer and showing them OUCH. If that's what it takes,so be it.

My husband, Will, and I have been married 7 years now (on Valentine's Day-LOL) and I was not aware of what CH truly is until this last cycle. Of course, he told me years ago but I did not know what it was or where to begin looking for information. I was among the many who thought it was "just another headache" and the rest is history.

Becca, never give up trying to get the word out about CH. Even when your co-workers roll their eyes (I'm sure mine do-but I don't give a sh*t),just keep it up. Take every opportunity presented..even when you have nursing students rotate through your unit..you never know how far the information you provide will go.

Title: Re: Nobody Listens!
Post by KimM on Feb 25^th, 2002, 7:10pm

Boy, if only we could get some people in my husbands own family to understand about CH and that it's not just another "bad headache" that he can't handle. As far as co-workers go, I think they sympathize with me, but they too, like so many other people, have had one of those headaches also. I don't think someone who truly knows what CH is wouldn't even put in the category of a "headache" as it is so far beyond that. We just had another ER visit today, the second in two weeks as my husband is out of Imitrex until next month and very low on pain medicine. There are a couple of docs and nurses there that have seen him so much that they have finally figured out that he's not just some other nut off the street wanting some pain meds. Still, there are some there that I would love to wring their necks. The triage nurse was so mad because he wouldn't sit down and be still. I tried to explain to her why that was impossible but she just rolled her eyes. I would love for some of them to experience what he feels for just 5 minutes, boy would they change their tune. Well, I'm gonna end it there. This is my first post on this wonderful place for us supporters. I hope to post here often, it just seems that I could talk forever about this as I know most of you can relate. It's 8 pm now and I know I have an hour before Mike is head banging. Gonna try to get in some quality time with him and the boys tonight before the torture begins. Hope everyone has a good evening. :) Kim

Title: Re: Nobody Listens!
Post by Linda T on Mar 2^nd, 2002, 7:25pm

I'm a sufferer. And I hear everything you're saying. However, I not only wish some of the nurses/doctors would get CH for 5 minutes - I wish EVERYONE would. Kinda horrible, I know. Truly wouldn't want to wish this on my worst enemy. But I think that until EVERYONE and i do mean EVERYONE knows what's involved here it will continue to be just "one of those headaches". I do get alot of support from my husband. However, not even he understands the hell. My suffering is done in the middle of the night when everyone's asleep. I almost prefer it that way. If I can't do anything for myself during these times, how can he do anything for me. I don't want him to hear me scream or see me banging my fists against my head. I certainly don't want my 4 year old to see it.

Kinda went off track - sorry. Thanks for the support. I know you are all doing what you can. Linda T.

Title: Re: Nobody Listens!
Post by Linda T on Mar 2^nd, 2002, 7:26pm