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(Message started by: gene on Jun 20^th, 2003, 12:15am)

Title: example of e-mail fom above post
Post by gene on Jun 20^th, 2003, 12:15am

Title: Re: example of e-mail fom above post
Post by brain_cramps on Jun 20^th, 2003, 4:38am

on 06/20/03 at 00:15:13, gene wrote:

Dear Dr. So and So,

This note is re: your patient/my fellow Clucter Headache sufferer/and member of CH.com, Julius Caesar.

Hmmmmm... Do only hens get clucter headaches or do they also occur within the rooster population?

grant ;D

Title: Re: example of e-mail fom above post
Post by gene on Jun 20^th, 2003, 5:15am

hilarious comment on my typo,

I won't bother you all with another post.

Gene

Title: Re: example of e-mail fom above post
Post by brain_cramps on Jun 20^th, 2003, 5:54am

huh?

Title: Re: example of e-mail fom above post
Post by gene on Jun 20^th, 2003, 6:19am

now theres an intelligent reply!

Title: Re: example of e-mail fom above post
Post by catlind on Jun 20^th, 2003, 6:23am

Great idea Gene! It may be something we could bring up with the ER doc at the convention. (hopefully she can still make it) We can ask her how to go about sending off a letter like that so that we all get proper and efficient treatment should we need to make that trip to the ER for trex/O2/other! :)

Cat

Title: Re: example of e-mail fom above post
Post by Peppermint on Jun 20^th, 2003, 8:21am

Cat, speaking of questions...

If I recall correctly, you said there would be an open forum for questions at the convention at some point. Does this still hold true, and to whom would be directing the questions? I know the attendance of the medical professionals has changed (I know you told me who, but I don't remember exactly ::) ).
Just asking, thought I might be prepared.

Thanks.
Pepper

Title: Re: example of e-mail fom above post
Post by 9erfan on Jun 20^th, 2003, 10:10am

I must've missed something, I have no idea what this post is in regards to.....

Of course, I'm a little nervous to admit that for fear of getting a response like the one that brain_cramps got....

Title: Re: example of e-mail fom above post
Post by Live4Fun on Jun 20^th, 2003, 10:27am

Gene,

First I think your letter is how we all would like to respond to the idiot doctors. But I have to agree with Elaine on this one (from the other post). Instead of putting them down, lets try to educate them. Remember since we are less than .1% of the population, our ailment is not on the top priority list for doctors to spend time learning about. As frustrating as that is to all of us, it is something we have to come to terms with. In the meantime, lets educate the doctors. Send them a link to this site. Fax them the info on this site. Be nice. If they don't respond to that... then maybe we can barrage them with a nasty letter or two ;)

I believe your heart is in the right place. Focus that negative energy into something positive... tough I know, especially when you are getting hit.

Oh and please be careful how you respond to people here on the MB. Look for a smiley face. If there is one on the post they are just yanking your chain. Typos can be fun to pick on and everyone needs a good laugh once in a while. They are never meant as a personal insult to you.

Like I said before, you have a good heart and some good ideas, we want you to be a part of the team.

Just my thoughts. Be PF gene, and keep the ideas coming. :)

Bryan

Title: Re: example of e-mail fom above post
Post by gene on Jun 20^th, 2003, 12:16pm

Thanks for your reply.

Be nice? If thats ok for you so be it, but for me when I'm getting hit and I run into this type of moron at the ER, I'll do what it takes.

As far as the posts go, I am frustrated. I am pain free now/ through my cycle/ so I am here for support. I suppose I'm probably taking myself too seriously, but if I write a post re CH and the only response is a comment on a typo?? Seems like a waste of time to me.

Anyway/ good luck to you all. I hope you find PF days and nights.
Gene

Title: Re: example of e-mail fom above post
Post by cootie on Jun 20^th, 2003, 12:47pm

Gene....Grant was jus jokein with ya.....he didn't mean ta be rude or disrespectful. We all love ta goof with each other at times....good for the soul.....friends can do that. Goof ball Pam :)

Title: Re: example of e-mail fom above post
Post by cathy on Jun 20^th, 2003, 1:02pm

on 06/20/03 at 00:15:13, gene wrote:

Dear Dr. So and So,

This note is re: your patient/my fellow Clucter Headache sufferer/and member of CH.com, Julius Caesar.

You saw Mr. Caesar @... Hospital ER this last Wed morning @3:30 am. He complained of an acute Ch attack and could not stand the agony of the certain numerous attacks that would follow in the next hours and indeed days and weeks, without serious and immediate help.

Our report is that you prescribed advil and sent the patient home...

We at CH.com (thousands of us) have all made such visits to our local ER's in the middle of the night, frustrated, of course with the pain that many Neurologists consider to be the worst a human can suffer.

Rarely, (but unfortunately not rarely enough) we encounter "professionals" like yourself, I don't mean to sound rude, and I hope you don't mind, but I have taken the liberty of enclosing some really useful and informative literature on Clusterheadaches, in the hope that as a respected member of the professional community you would take the time to read.

There is a great site on the internet www.clusterheadaches.com which can also give you an insight into the kind of suffering people with clusterheadaches go through, along with first hand stories and information. I hope your not offended by my letter, but maybe if I can get one professional to really understand this terrible condition, it'll be one less sufferer that has to endure this kind of pain.

Please note that I have CC'd your local newspaper my e-mail, in the hope that someone will be interested enough to follow up this condition and maybe use your professionalism to educate them before writing an article. in the hope that it may enlighten other professionals in the community.

I look forward to talking to you soon, to discuss your thoughts.

Gene

I changed the end of your letter slightly. maybe this approach is slightly better..??

Cathy

Title: Re: example of e-mail fom above post
Post by jonny on Jun 20^th, 2003, 3:10pm

on 06/20/03 at 12:16:58, gene wrote:

As far as the posts go, I am frustrated. I am pain free now/ through my cycle/ so I am here for support. I suppose I'm probably taking myself too seriously, but if I write a post re CH and the only response is a comment on a typo?? Seems like a waste of time to me.

Gene,

What your doing is a good thing dont let the ass-holes get to you, you are much better than they are because you are trying to help and the ass-holes are only here for a laugh.

Type on my brother!

..................................jonny

Title: Re: example of e-mail fom above post
Post by brain_cramps on Jun 20^th, 2003, 3:17pm

http://www.gifs.net/animate/setupz.gif

Title: Re: example of e-mail fom above post
Post by gene on Jun 20^th, 2003, 4:45pm

Dear brain cramps,
Point taken,
Gene

Title: Re: example of e-mail fom above post
Post by don on Jun 21^st, 2003, 12:48am

Good idea. Bad approach. Temper it a little. We need allies in the ERs, the approach your taking will alienate. We need to educate and develop cooperative relationships.

Also you can not say "we here at CH.com" Not everyone here may agree with you. Come right down to it CH.com is one man and permission to use CH.com in any correspondance should be asked befor publishing or sending.

Sounds like a developing approach. One that should invite a LOT of input and refining.

Title: Re: example of e-mail fom above post
Post by gene on Jun 22^nd, 2003, 2:38am

I would never assume to represent this web site, in fact like Dell said I would be the wrong guy/ too new etc.

I guess the indignity that i am faced with at the ER/ (Justifying my pain while all the proffessionals stand around appraising me// does he just want to get high?)
Sets a part of me in motion thats both angry and frightened, after all if I don't get the meds I need from these people I will have a terrible day and night before I can do anything else about it.

Don't they know that imitrex is no ones drug of choice?

Title: Re: example of e-mail fom above post
Post by tommyD on Jun 22^nd, 2003, 6:50am

Gene -

Your idea is on the right track. But... In "Business Writing 103" in college, they descibed the kind of letter you want to write as a "bad news/corrective action" letter, and it is one of the hardest kinds of letters to write. It's been a long time since college, but I took a stab at it. I tried to remove the personal aspect...i.e: "It is not you, dear doctor, but all those others who don't understand..." so I tried to de-emphasize a specific visit by a specific patient.... or should we include that? I don't know.

Anyway, since don is our fearless leader, I put his name at the bottom. He can take the heat... ;D

-tommyD

The Rewrite

Dear Dr. Xxxxxx

(optional? One of the members of Clusterheadaches.com told us of a visit to Xxxxxx Health Care Facility recently. )

Clusterheadaches.com, a patient-support and education group for sufferers of cluster headaches, works to insure physicians are well informed of the latest reasearch and most effective treatments for this condition.

Cluster headaches have been described by neurologists as the “worst pain a human can suffer,” and while not fatal in itself, suferers have been known to commit suicide to escape that pain.

Cluster headache sufferers are rare -- fewer than one in a thousand experience this disease, and many are misdiagnosed. No medication has ever been specifically developed for this condition. Given this situaltion, our experience is the condition is often misdaignosed, and inappropriate treatments are prescribed.

Cluster patients sometimes have trouble having this condition taken seriously; a few physicians see them as seekers of narcotic pain medications; others confuse treatments with those effective for migraines; or prescribe over-the-counter pain relievers. Neither opiate pain relievers nor over-the-counter headache remedies are particularly effective for cluster headaches.

We have enclosed information on detailed diagnostics and treatments found effective through the experience of thousands of cluster headache sufferers and endoresed by neurologists expert in the treatment of cluster headaches and other types of cephalgia. We encourage physicians to work closely wityh cluster headache sufferers in a partnership aimed at relieving their pain and restoring them to a normal life.

Please take the time to review the enclosed information, and for more information and discussion on clusterheadaches, please visit www.clusterheadaches.com and the website of the Organization for the Understanding of Cluster Headaches (O.U.C.H.) at www.clusterheadaches.org.

Thank you for your time.

Don Young, President
Organization for the Understanding of Cluster Headaches

Title: Re: example of e-mail fom above post
Post by don on Jun 22^nd, 2003, 9:20am

Now the big question.

What will prevent trolls, quacks, imposters and those who generally have a hair across their ass from requesting the letter be sent everytime a Doc doesn't smile at them.

How do you screen out the valid requests?

Title: Re: example of e-mail fom above post
Post by oringkid on Jun 22^nd, 2003, 9:21am

I like that one TommyD.

You know, I would think, (haven't been to ER for CH, but have for other non-obvious pain) that if you tell them right off that you do not want any narcotics and then tell them you have CH and what is usually effective, you wouldn't have any problems with the "drug-seeker" label.

If you just go in screaming "Gimme something for the pain!" yeah, if I were an ER doc, I would question what you were there for.

I tend to see things from both sides. I can definitely see that an ER doc who has dealt with heart attacks, strokes, poisonings, broken limbs, accident victims, gunshot wounds etc. during a day would perhaps not take someone with "a horrible headache" too seriously. Even if he/she believes you! I have family who works in ER and you would not believe how badly the EMERGENCY room is abused. Mostly due to lack of insurance in most families. But people come there with a cold...or a headache (even the normal kind) which takes time away from those with REAL emergency needs.

I think the letter/s above or some combined or other version would better be directed toward those regular doctors or neuros who do us no good.

Just my 2 cents.

Sherry

Title: Re: example of e-mail fom above post
Post by don on Jun 22^nd, 2003, 9:34am

I'm thinking the letter should be produced in a more generic format and be available on the OUCH site in a printable version. The letter can state that the contents of the letter have been endorsed by OUCH.