Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2003 Posts >> Serious and long
        
(Message started by: Donna on Aug 25^th, 2003, 10:39pm)

Title: Serious and long
Post by Donna on Aug 25^th, 2003, 10:39pm

This true story is based on what this writer thinks is just about the way it happened.

Once upon a time a man with cluster headaches desparately searched the web for info on his problem. When he couldn't find anything worthwhile, he decided to start his own web site.

Before he could say rumplestiltskin, people were finding his site and forming this true bond that only clusterheads are capable of. These people worked hard to develope a site with things compared, agreed upon, meds that worked for the majority, how to offer support to those who were literally at the end of their rope, how to promote awareness of this malady, formed many committees who tried their damndest to find ways to get the word out to docs, drug companies, insurance companies, welfare departments, disability departments and so much more. These things were hashed over and over until we felt that they were as right as laypeople could possible get them. Just look at the buttons in the menu. You can't be anything but impressed at what these early settelers accomplished. These facts are still found to be true today.

During the second year, these friends met in a garage and formed the plans for the organization we proudly call OUCH. An unbelieveable amount of work went into the formation of this not-for-profit organization. This work to go forward is still in motion.

Every topic imaginable was discussed, debated, researched and finally deemed true for the majority of sufferers. Topics like acupuncture, herbs, altitude, chiropractors, magnets, copper, TENs, exercise, mushrooms, sex, heat vs. cold, light vs dark. You name it, it was discussed. Charts and graphs were made, library in place and more. Brochures and Newsletters published.

During the third year, the hits on the site took off like a rocket. We started that third year with probably about 100 official members. New people found the site everyday asking the same questions that we had asked, only the answers were here for them. We had done that part of the legwork and were thrilled to share with them. Our membership was growing as we had hoped. We wanted more people and more so that we could be a voice rising out of the darkness.

We have now come to a new stage in the development of our growth. The newcomers are happy and interested in the fact that they are no longer alone, have found resources for handling their pain and are ever so happy to have support and the comorodery of people just like themselves. This is as it should be but..........

the atmosphere is changing as it is bound to do. Due to the large number of people visiting the site each day, it can be expected that many of those arriving around the same time will form friendships (some critics will call these "cliques"). While the early settlers feel that what they set out to accomplish is happening, they are still of the mindset that everyone must be seriously working for the further development of OUCH.

So, now we have two groups of people, both giving and receiving, but with different goals.

Is it time to acknowledge the fact that there are two goals and work toward satisfying both needs?

Both need the opportunity to meet in person, thus the feelings experienced at the Convention. But both are not interested in the working Chapters of OUCH as is shown by the lack of interest in meeting for business purposes and the failure of committees. Yes, this is typical of all large organizations such as ours, but they do not have the ultimate goal that we do and that is working hard to accomplish what is necessary for a serious medical need.

What we don't need is bickering on chmb and the loss of valuable people. Without them, the further growth of OUCH is put in jeopardy as they have been around since day one and have contributed more than many of us will ever do. And even those who have not been around since day one but have taken an active part in the growth of OUCH and have supported with a passion those just coming in from the cold, misunderstanding world outside are much too valuable to lose.

It is time to set our priorities, evaluate what we need to do to eleviate what is now destroying the backbone of our organization and put into motion a solution.

Maybe we who are interested in OUCH need to use the message board on the OUCH site, delegate a few sufferers and supporters to take turns greeting the people on the message board and let those who are now on the mb and wish to continue there to maintain their friendships do so.

I know that I didn't do a good job of getting my feelings and thoughts in the proper order, but I hope that some do think about what I am trying to convey.

Title: Re: Serious and long
Post by andy on Aug 25^th, 2003, 11:10pm

Very well said Donna see ya in October ................andy

Title: Re: Serious and long
Post by OneEyeBlind on Aug 26^th, 2003, 7:13am

Donna, very good post. I have tried to offer my services/ideas on this board a few times with no success. I can do just about anything ......... I'm just not sure what that "anything" should be to help our cause. I for one need direction and a specific task. Ask, and I'll be there. Wanting to help .... just not sure how.

Title: Re: Serious and long
Post by jminmilwaukee on Aug 26^th, 2003, 7:35am

Interesting post Donna. I believe you might be onto something here. I originally stopped by this board back in the mid 90's if memory serves me and have seen the change you speak of.

Until now, I did not even know that ouch and CH.com were one in the same. I though ouch was a seperate entity altogether. Here is my take on the situation if you care to hear my 2c.

As most of you know, I am working with the clusterbusters on the controvertial treatment regarding shrooms. This offshoot group was formed to "remove" the issue from those who are not comfortable with it. We have had tremendous success and are pushing forward on all fronts to further our research, compile data and guidelines as pertaining to this treatment.

My point is (and I could be wrong) that OUCH is very similar in there endevors. You believe in the cause and have organized to pursue the objectives as a group. I would suggest that OUCH continue its fine work on its own and keep the CH board up to date every now and then. Those who are serious and would like to be a part of OUCH should not be excluded. Keep your cause alive on the CH board but move the buisness portion to the OUCH site.

In my eyes, CH.com has always offered the needed support and information that is crucial to many. When you think about it, how many suicides have been avoided thanks to DJ's determination.

The above thoughts have been working very well for the Clusterbusters as it alows us to remain focused on what is most important, an eventual cure and acceptance among the med community regarding shrooms. We are not sidetracked by negative or childish behavior that has shown up here so often. As a matter of fact, the very issues you speak of that are dividing and destroying OUCH are the EXACT same reasons we have moved our "buisness" elsewhere.

Only problem with our group (clusterbusters) is that soo many have found thier cure or at least enough control over the beast that we never hear back from them. We do have a very strong backbone consisting of about a dozen pioneers and newer Clusterbusters that have kept the cause alive and continue moving forward.

My point is that I think this formula would also apply to OUCH. Get you backbone and cause out of the BS and negativity and great strides will continue to be made. Also most important, keep the rest of us up to date and extend occasional offers to those who would like to help.

Thanks for hearing me out and Good luck!

Jmin