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Title: Gene's idea for fighting back Post by gene on Jun 19th, 2003, 10:53pm What do you guys think of this one?? An e-mail response to all bureaucrats/ doctors/ins co's/ or whomever is dismissive and not sensitive to the unique and immediate nature of CH sufferers. Here's how it would work: We get a new post on the msg board, describing like last weeks post from someone, that some quack neuro has refused to medicate a CHer in cycle until they can come in for HIS first available opening (some 2 weeks away. The CHer asks for his e-mail address/ then finds the appropriate e-mail add. for 1 or 2 of the local newspapers. Within a few days this quack/ or difficult ins co person receives a barrage of mail from all of us expressing our outrage and making very clear that all these e-mails are being cc'd to their local newspaper. I like it!! Pardon a newbie if you long timers have already tried this!! Gene PF |
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Title: Re: Gene's idea for fighting back Post by Elaine on Jun 20th, 2003, 10:10am I don't think Bulling doctors or talking to doctors is going to help. I read your letter above. I feel that if you want to deal with them then you got to get on their level. You have to talk to them so they will understand. Instead of putting them down. Why not just send them a nice note telling them that you feel they did not understand clusters and that you would like to share what information you have with them. Send them print outs of information. You might be surprized how much better you will be recieved. |
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Title: Re: Gene's idea for fighting back Post by Margi on Jun 20th, 2003, 10:20am Hi Gene, While I do understand where you're coming from here, I have to agree with Elaine. It's the old 'catch more flies with honey, than vinegar' adage. Yes, we've all reached the saturation point with scheduling frustrations and some of us ( :-[ ) have even gotten greasy with our neuro's offices when they try to put us off. Doing that, however, only makes the labelling of clusterheads worse in the long run. Receptionist will immediately develop the 'oh it's YOU again' 'tude and your telephone message gets put at the bottom of the list for your neuro. For the episodic sufferers out there, how about setting up an arrangement with your neuro when you are OUT of cycle so that you can have a "911" deal struck for when your cycle hits. In other words, go introduce yourself to your neuro when you're not in cycle and tell him/her that there will come a time when you're going to need meds/scripts like RIGHT NOW and that you're giving them a heads up that you need to be attended to immediately when you do place that call. For chronics, maybe you can do a similar thing while in low cycle? The cluster knowledgeable neuros out there may even hold a prescription for you on file and call it in for you when the cycle starts - or your pharamicist can do that for you, as well. Just keep the script there and not fill it until you need it - that's what we do here for Mike. It's like a savings account. Verapamil, Imitrex, Lithium, all kept on file indefinately at the 24 hour drug store that is 3 blocks from our house - it's our safety net. I dunno - just shooting out ideas here. But threatening folks with negative media attention will sometimes produce opposite results than what you were seeking, I think. |
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Title: Re: Gene's idea for fighting back Post by BlackDog on Jun 20th, 2003, 11:41am Margi, I love your idea of a 'safety net' type deal with your doctor. When I mentioned something similar to mine he said it was 'obsesive compulsive disorder' to be so worried about it in advanced. THEY JUST DON'T GET IT. Arrrggghhhh. (sorry, I know this is not on topic here, it just struck a chord with me). Darren |
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Title: Re: Gene's idea for fighting back Post by BobG on Jun 20th, 2003, 12:15pm It would be great if a nice email/phone call/letter to the un-caring, un-educated, I-am-God, bureaucrats/ doctors/ins co's/ or whomever got their attention. Attention is the key word. But sometimes to get the donkey to pull the wagon you have to hit it between the eys with a hammer just to get its attention. |
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Title: Re: Gene's idea for fighting back Post by gene on Jun 20th, 2003, 12:34pm Boy oh boy!! A nice e-mail? It seems to me that you who advocate this type of response are doomed to being sent home w advils/ see me in the morning if it's not better. I have no problem w that as long as you're not the one looking after me in the ER. My last visit to the ER I got the female Doc, looking down at me through her glasses perched on the tip of her nose. She started me off with " you are taking too much imitrex etc." in a really condescending manner. I said right away "look I'm in real need here and I feel as though you are not in the spirit of helping me/ you seem condescending..." I left with her apologies and all the meds I required. I'm quite sure that being nice would have ended with me suffering all night. It seems as though I have become the negative person on this site/ not my intention, but so be it. I guess it just isn't a good match. Good luck to you all! God bless and PF days and nights, Gene |
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Title: Re: Gene's idea for fighting back Post by cootie on Jun 20th, 2003, 12:42pm BobG.....ahhhh....ya hit em between the ears not between the eyes...otherwise they pass out into a coma or die and ya don't get yer point across. Pam that's been around a few DONKS ;) .......Gene....most the docs we have delt with jus seem too busy and see too much to care enuff for individuals...sad isn't it ? |
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Title: Re: Gene's idea for fighting back Post by cathy on Jun 20th, 2003, 12:50pm Gene...if enought people participated I think it's a great idea...but then I also had no luck being nice...I was nice for 3 1/2 years and got nowhere... :-/ I was a complete fucken headcase on a mission for 20 mins in the doctors surgery and got wes seen by a competent neuro, a diagnosis and meds the next day...... ::) mind you, hope I don't get ill, I now have a doctor that I'd rather not see again... ;D Cathy |
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Title: Re: Gene's idea for fighting back Post by Margi on Jun 20th, 2003, 12:51pm Hey Gene, I'm sure not saying that we've NEVER sent the greaseball emails to the neuro....in fact I personally HAVE - thus the blushing face in my post above <--- um, that was me. My career has been one of hiring and training administrative support staff, so I'm real good at recognizing shitty snotty receptionists. I, uh....run right over them, ok? I'm not shy about that AT ALL. When my hubby was last in cycle and I had one barracuda 'tude receptionist try to blow me off....let's just say that I got us in to see the neuro that afternoon after a few heated emails and phone calls. My point was, however, that because of my actions that day the neuro and their staff initially viewed us as hysterical neurotics who were drug seekers. (I pulled the 'suicide card' with support staff, laying the guilt trip on them that if they didn't listen to me did THEY want to be responsible for actions my hubby might take? He wasn't suicidal at all, but I don't like getting said 'no' to. And, neither one of us had slept a full night for about three months at that point. ::)) Since that initial meeting, I've taken a different tactic with that office. I printed up a binder full of information from this website and OUCH's website and presented it to them as I explained what OUCH does. Gave them a few months to chew on that and the attitude difference from them was immeasurable. Yes, we as cluster folk really DO know a lot about our affliction. But I think we're in the minority there when it comes to the rest of the neurology patients. Once they realize that we have HAD to educate ourselves (out of self-defense if nothing else) they do stop and pay attention. So, in summary (yes, I am shutting up soon), I'm just speaking from personal experience here that the aggression wasn't the right route to go for us. Don't take your toys and go home, Gene - you're a clusterhead - you have a right to stay here. We're a diverse family here and that's cool. Otherwise this would be a pretty boring place. PFDAN's to you. |
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Title: Re: Gene's idea for fighting back Post by Elaine on Jun 20th, 2003, 1:10pm Gene, my opinion has nothing to do with who you are? My opinion is based on what you wrote in your post!!! I don't agree. I have gone through HELL in ER also!!! Having a Bad attitude got me no where. A good attitude got me every where. I called the admistrator of the hospital and was very nice about what happen to me. I offered to send information to them. They accepeted the information, and my ER visit was a NO CHARGE! The doctor that saw me also called ME and Thanked me!!! Next time just put a note at the bottom that says hey if you don't agree with me STFU don't post! I will be happy to skip it :-) |
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Title: Re: Gene's idea for fighting back Post by gene on Jun 20th, 2003, 1:53pm Elaine, What gave you the idea that I have a problem w you disagreeing w me? Why would I ask you to STFU? I'm pleased to have a repy that is thoughtful. Although we disagree We share a common problem that we would both like to solve. Gene |
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Title: Re: Gene's idea for fighting back Post by Mark C on Jun 20th, 2003, 2:20pm 8) http://www.cs.berkeley.edu/~sequin/CS285/SOL97/proj1/yys.gif |
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Title: Re: Gene's idea for fighting back Post by SommelierCH on Jun 21st, 2003, 7:15am When my last 10 week cycle started in Oct. ’02, I found that I had a new doctor, who just didn’t get it, and pissed me off bad. I called Blue Cross and switched doctors. The new guy couldn’t see me for a week, but I got set up with an emergency doctor in the same building the next morning (just needed a script for O2 refill and Maxalt MLT 10mg.). I came in the next day with several envelopes containing five, $1.00 scratcher lottery plays and a thank you card. I gave one envelope to the receptionist, who immediately got me inside. I gave one to the nurse, who scarfed samples of Maxalt MLT 10 mg. and Zomig ZMT 5 mg. and slipped them to me, and I gave one to the emergency doctor, who gave me all the scripts I needed. The next week I saw my primary. I repeated the ticket/thank you card give away and handed them at the same time, the “Exploding Eye/Suicide Headache” sheet. They treated me right. The doctor was so cool, that I bought a bottle of Champagne for him and brought it in the next day. If you want to know the power of kindness (especially in the stressful medical business), three of the women cried when they opened their envelopes, everyone said that no one had ever done something like that, and the male Dr. called me twice at home (answering machine) to thank me for the Champagne. Considering how much it cost me with the first Doctor (who wouldn’t submit a simple “he needs more meds” form to Blue Cross), and the fact that Cluster Relief has no price, I might as well use my money wisely, and put a smile on someone’s face at the same time. Don’t get me wrong, I am filled with piss and vinegar about this whole Cluster situation, but on the one-to-one level, we aren’t dealing with giant insurance conglomerates, were dealing with receptionists. Life is a game. David J. |
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Title: Re: Gene's idea for fighting back Post by CathiP on Jun 21st, 2003, 11:26am David- Style, finesse, and just what Iwould expect from you! Mostly, I'm glad it worked! I, too, believe ya catch more flies with honey....persistent, patient, long thick, gooey- everyone yells, why would anyone want to listen to that? Sometimes, the best way to get attention is to lower the voice, so people have to work harder to hear you.... Now, if that doesn't work, well, GO POSTAL!!! David-I salute you! Cathi |
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Title: Re: Gene's idea for fighting back Post by brain_cramps on Jun 21st, 2003, 11:39am Somm Great idea. Its amazing what can be accomplished by using an approach like that. Glad it worked for you. You got a lot better results than the typical "ranting, raving, screaming, threatening..." approach. grant 8) |
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Title: Re: Gene's idea for fighting back Post by don on Jun 21st, 2003, 11:49am Re: Emailing Docs Good idea. Bad approach. Temper it a little. We need allies in the ERs, the approach your taking will alienate. Also you can not say "we here at CH.com" Not everyone here may agree with you. Sounds like a developing approach. I wouldn't go forward with it without a LOT of input and refining though. Sloutions sought out by responding through frustation or anger are rarely found. |
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Title: Re: Gene's idea for fighting back Post by Ree on Jun 21st, 2003, 7:33pm I have had my fill of snotty doctors... I'm with you Gene... My daughter in law is a beautiful woman from japan... she is a very smart woman also problem being that she looks like she is 15 and speaks ESL(English as a Second Language) She has a beautiful new baby boy... the doctor because she is Japanese and married to a serviceman and looks 15 doesnt take her seriously. He never tries to explain anything to her. He never seems to try to communicate and even when its a serious matter she doesnt know how to ask a question of him because he intimidates her. I told her to fire him. That he is working for her. Let's make these people work for their money. Although I do agree at times honey gets ya more... If the food tastes bad it gets sent back... fight back. If you have the courage to do it... I'm with you! Ree |
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Title: Re: Gene's Point #1 Post by gene on Jun 22nd, 2003, 2:25am re: the last few comments re: point 1 Although it's true that many of my home folks (New Yorkers) don't suffer fools well; (Quacks) there is another side of me that I hope you will consider before completely pre- judging me. Here it is: When given good respectful service either in the form of a knowledgeable health proffessional willing to blow past the bureacracy and aggresively medicate if called for (as in a CH Cycle) or even in the uneducated, who are willing to listen and take direction from the only people that actually, definitively have 1st hand knowledge of the disorder and the individual treatment regimes that work for them. ("Ithink that might be historys longest run-on sentence.") I shower them with sincere gratitude, charm, when I leave they feel that they were appreciated and how profoundly, tonight, they impacted real human suffering. |
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Title: Re: Gene's idea for fighting back Post by Ree on Jun 22nd, 2003, 4:14pm I have removed my previous post... although Idont understand what gene is actually getting at... I dont want to hurt his sensitive feelings... so I wont be posting to him any more... Gene is so touchy... |
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Title: Re: Gene's idea for fighting back Post by jonny on Jun 22nd, 2003, 4:19pm Want me put the boots to him, Ree? ;D ..............................jonny |
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Title: Re: Gene's idea for fighting back Post by kim on Jun 22nd, 2003, 4:40pm Welll.................i'm speecless..................i'm gonna shoot everybody i don't like at all................. Got that all? Swamp mama |
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Title: Re: Gene's idea for fighting back Post by Ree on Jun 22nd, 2003, 8:01pm Nahhhhhhhhh no boots hes harmless... I like his big brain reminds me of another poster here... we just have to get him to feel the stuff he is reading just so he gets it right for crying out loud he even thought E was picking on him... a coupla posts up I was agreein with him... Tony is that you??? ree |
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