Author |
Topic: baby steps/giant steps (Read 334 times) |
|
gene
New Board Junior
I love YaBB 1G - SP1!
Posts: 52
|
 |
baby steps/giant steps
« on: Jun 2nd, 2003, 12:34am » |
 Quote  Modify
|
I Believe the American people hate human suffering. We also hate stupididty/ lack of common sense. The CH sufferer is arguably the poster child for human suffering, yet so much pain could be aborted with existing medications and technologies. Sadly the US insurance systems and medical community too often are only another obstacle.
I'd like to think that if exposed.....
Genes "that prick talks to much"
|
|
 IP Logged |
|
|
|
Callico
New Board Hall of Famer
Proud Dad of a US Marine!
Gender: 
Posts: 1395
|
|
Re: baby steps/giant steps
« Reply #1 on: Jun 2nd, 2003, 2:04am » |
Quote Modify
|
Gene,
I understand your frustration and simpathize, but you must understand that the real problem is not the med community and insurance industry. At approximately .69% of the population there just is not an economic reason for them to pay any more attention to us. It just is not economically feasable for an insurance company to write a policy that would fit our needs. With the cost of prescriptions what they are for them to cover what we really need would raise the cost of our coverage to much to high a rate. I cannot afford insurance now without having to have such a policy. There is no malice on their part. They are in a business that requires they make a profit. Otherwise, no profit, no company. No company, no insurance. The reason they can provide coverage for cancer, migraine, accidents, you name it, is that there is a large enough segment of the population that will need coverage to be able to sell it to those who will not use it, hence the concept of "insurance". They simply use the actuarial tables to determine the percentage of people that will use the coverage against the percentage of people that won't, and sell it to all. If they sell it to enough that won't use the coverage then they have the money needed to cover the ones who will use it. If they don't they have two choices: Raise the rates, or Discontinue coverage.
As for the medical community, again, we are such a small percentage of the population that most medical personel will never deal with one of us in their careers. They don't have the impetus to study such a rare disease. For instance, how many Drs do you think are specialists in Ebola in Chicago? They may read up on it out of curiosity, but barring some strange quirk of fate and someone bringing in a case contracted just befor leaving the tropice, they will never face it. CH is little different. It only seems different because it is us who deal with it every day. That is why it is so important to learn all that you can about the malady here and/or elsewhere so thay you in turn can direct your Dr and help in your own treatment.
Sorry this is so long! Didn't mean to write a book. As late as it is and as tired as I am I hope this makes sense. Keep up your enthusiasm and keep on educating people one at a time until we do get enough interest to get funding for research and a cure.
jc
|
|
IP Logged |
"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
|
|
|
don
Guest
|
|
Re: baby steps/giant steps
« Reply #2 on: Jun 2nd, 2003, 11:40am » |
Quote Modify
 Remove
|
Within the last year or so I have noticed something in the posts by folks who are looking for a proper diagnosis and treatment.
The word Cluster Headache is being uttered more often by the Docs. Granted they may be clueless about treatment but at least word is getting out there. I'm seeing less and less of "bad teeth" and "sinus infectection" (mis)diagnosis.
Are we there yet? Nope. Not even close, but closer than we have been. Progress not perfection.
|
| « Last Edit: Jun 2nd, 2003, 11:42am by don » |
IP Logged |
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: baby steps/giant steps
« Reply #3 on: Jun 2nd, 2003, 11:50am » |
Quote Modify
|
Can we as a group educate the medical profession re CH? Doubt it.
Can we educate sufferers who come to the web sites and let them in turn educate their doctor? More probable.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
JDH
CH.com Alumnus
New Board Hall of Famer
We will get by, We will survive!
Gender:
Posts: 2453
|
|
Re: baby steps/giant steps
« Reply #4 on: Jun 2nd, 2003, 11:59am » |
Quote Modify
|
Good point Don.
Hopefully the word is (slowly but surely) getting out there about ch's and what they're all about.
When I was first diagnosed in '85 the Dr says "You're having ch's BUT we just don't know much about them" and sent me on my way...whatever dude, sorry to bother you.
Now days we have a deal, they give me o2 and Imitrex scripts BEFORE sending me on my way and I don't destroy their office.
It's getting better all the time!
Jim
|
|
IP Logged |
9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
|
|
|
don
Guest
|
|
Re: baby steps/giant steps
« Reply #5 on: Jun 2nd, 2003, 12:16pm » |
Quote Modify
Remove
|
Quote:| Can we educate sufferers who come to the web sites and let them in turn educate their doctor? |
|
Thats the key. We also need to teach people how to advocate for themselves such as JDH. Office Max must be dissappointed in you though. Profits down for the 2nd quarter again.
|
|
IP Logged |
|
|
|
jonny
Guest
|
|
Re: baby steps/giant steps
« Reply #6 on: Jun 2nd, 2003, 3:41pm » |
Quote Modify
Remove
|
on Jun 2nd, 2003, 12:34am, gene wrote:
Genes "that prick talks to much" |
|
LMMFAO!!!! ;D
You can take a joke, thats a good thing!!
Welcome aboard, Gene......sorry you have to be here but theres no better place to be if you suffer or support CH.
................................jonny
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
   
Gender:
Posts: 14968
|
|
Re: baby steps/giant steps
« Reply #7 on: Jun 2nd, 2003, 6:08pm » |
Quote Modify
|
Yes. Insurance companies are out to make a profit. And, they diligently hack away at my access to health care every day to do it. How nice. These criminals have decided that my anti-seizure drug is suddenly, after 2 years, no longer on their "formulary." My cost per prescription has risen by a factor of 6 in less than a year as a result. Fuck ‘em. All it has to do is become personal........
We're supposed to understand that it's okay that 41,000,000 Americans have no coverage and that elderly people have to choose between medication or food. Jesus.
No matter what they tell you, and they never stop trying to scare us with nonsense, the US government can buy health insurance at a fraction of the cost. Naturally, we are told over and over that we can't afford it and that it won't work. Bullshit. Sadly, this is exactly what we’ve let them get away with for 100 years. It’s not true and even with government inefficiency, it would be a fraction of the cost.
Only Americans put up with this shit. We are evidently supposed enjoy getting screwed by politicians over health care. The current junta isn't on our side either.
Charlie 
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
jonny
Guest
|
|
Re: baby steps/giant steps
« Reply #8 on: Jun 2nd, 2003, 7:00pm » |
Quote Modify
Remove
|
Charlie for fucking president!!!!
You got my vote, Bro
Im off to vegas....um, bed
Rock on, Charlie....giv'em hell!!!!
.......................................jonny
|
|
IP Logged |
|
|
|
Mark C
CH.com Alumnus
New Board Hall of Famer
Onward through the fog.
Gender:
Posts: 2660
|
|
Re: baby steps/giant steps
« Reply #9 on: Jun 2nd, 2003, 8:02pm » |
Quote Modify
|
Lawyers fucked it all up.
|
|
IP Logged |
Click The Flag
|
|
|
gene
New Board Junior
I love YaBB 1G - SP1!
Posts: 52
|
|
Re: baby steps/giant steps
« Reply #10 on: Jun 2nd, 2003, 8:23pm » |
Quote Modify
|
Yes of course ins co's are greedy bastards who don't care. My point is that if you walked into an ER with your hand cut off, they would stop the bleeding and administer pain meds before booting you. Ers have to, they have these "anti dumping" laws. My best friend, who died last yr, had no ins and walked in for what turned out to be emergency heart surgery. They did the surgery, 5/6 days in icu then released/ they waived All charges.
Ch is now documented enough as "suicide headaches", (the worst pain humans can suffer etc) I would think for it to be re-classified somehow/ Disability? something!!
Reasonable people informed about the severity of the pain should change from the dreaded obstacle to the how can we help!!
I'm simply looking for appropriate effective treatment when in cycle, and to maintain as much personal dignity as possible when seeking it. Why should I have to beg for pain relief?
Gene
Jonny, you are the first person in my 52 years to ever comment on my big mouth. (he he) You should hear me when the beast pays a visit.. I'm much quieter!!
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
Gender:
Posts: 14968
|
|
Re: baby steps/giant steps
« Reply #11 on: Jun 2nd, 2003, 9:00pm » |
Quote Modify
|
It's to stop calling this thing a headache.
Some sort of syndrome sounds better. We've done this a few times. Been awhile though
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
rumplestiltskin
Guest
|
Quote:| I Believe the American people hate human suffering. |
|
...not when we are in vengeance or entertainment mode. We relish it.
Expecting Mother Teresa (love) from the Dark Side (profit/power motivated corporate Amerika) is an exercise in futility.
Just be quiet, believe what Clear Channel tells you, and in times of trouble wear this 
Watchin the river
den
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss