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

        New Message Board Archives >> 2003 Posts >> Episodics - Don't go away..
        
(Message started by: marty on Jan 28th, 2003, 2:40pm)
Title: Episodics - Don't go away..
Post by marty on Jan 28th, 2003, 2:40pm
Hi Y'all

I've been thinking (may not be all that healthy for me..) and it strikes me as sad when we have over 3000 members on this message board and only a handful that are active..

Every now and then we see new posts that says: "Back again", "Do you remember me" etc.. It turns out to be people that are episodics and as soon as they cycled out, they stopped visiting this message board. Now they are hit again - and back they come for support again.

That is all good and well - that is why we are here 24 hours, 7-days a week..  

It is clear to me that we must be doing something wrong - or maybe not doing enough to keep our members active and wanting to stick around even when not in cycle.

I don't have the answers, only a few suggestions that may work;

1.  The State Chapter(s) can do a lot to keep members active by providing local contacts and organizing events.

2.  Even if there is no active Chapter in your State, by keeping in touch via e-mail when you see a person "dropping" off the board to let them know that we need them to stay with us may be all that is needed.

3.  Let's try to find out what our members do for a living and what special interests they have / skills etc.. We may have people that can move OUCH to a new level, open the eyes of the Legislature, kick butt in the Medical field, Insurance Industry.. There must be so much talent within our ranks - we just have not taken to time to locate it. By asking OUCH to direct this talent in a co-ordinated effort - we can move mountains.

There is so much going on behind the scenes in our group.. You all know who you are. Every day, there are telephone calls, meds being sent to those without, O2 being delivered by one member to another etc. As for me, I can only thank Linda H for bringing Jill to our attention and allowing for me to do what ever little I can to help.

Now, if we can do all this, a handful of us..  Imagin what we could achieve with 1000's of members reaching out, some helping in a personal way, others doing battle with insurance companies, Doctors educating Doctors and so on.

OUCH could co-ordinate and oversee such a rescource, but it starts here - It starts with you and I, by keeping and maintaining an active membership.

We can do this, the question is.. do you want to?

Marty
Title: Re: Episodics - Don't go away..
Post by brain_cramps on Jan 28th, 2003, 2:52pm
Good post, Marty

I'm not sure how to keep someone here.  A lot would just rather forget about the pain until next time around.

Twice in the past, I came and left.  This last cycle I decided to stick around.  Now, if only I knew how I could help out in some substantial way.   ???

Any suggestions?
Title: Re: Episodics - Don't go away..
Post by marty on Jan 28th, 2003, 3:05pm
Brain_cramps..

We all want to forget about the pain - trust me, I want to forget about it to..  I'm due for another round in May..

But in my way of thinking, it is when I am not in cycle that I can actually do something productive so that maybe, the next time I get hit, there can be more support for me, maybe a Doctor or two that took the time to listen to me, and maybe one of those Doctors will be at the ER when I have to go.. and maybe, he will remember me..

I am waiting for the new brochure that Bob_P is working on and when I get it, I have an appointment with Kaiser here in San Diego - they have expressed interest in allowing me to place it at all of their Hospital locations here.

I have talked to my personal Dr and he "may" (even though he is not allowed) tell other CH patients that he see about us.

There is a lot of things that we can do - and it does not take extra time to do it.

If we can find a way for OUCH to co-ordinate something like this..  It might work!

Marty
Title: Re: Episodics - Don't go away..
Post by brain_cramps on Jan 28th, 2003, 3:12pm

on 01/28/03 at 15:05:59, marty wrote:
I have talked to my personal Dr and he "may" (even though he is not allowed) tell other CH patients that he see about us.


Why would he not be allowed to tell anyone?
Title: Re: Episodics - Don't go away..
Post by marty on Jan 28th, 2003, 3:15pm
Don't know.. he said that he is not allowed to referr to any private organization or group.. Adn telling a patient about such a group would fall under this.

Probably Kaiser rules as to liability.

Marty
Title: Re: Episodics - Don't go away..
Post by Linda_Howell on Jan 28th, 2003, 3:31pm


  The only thing I can think to add to Marty's post is this:

Episodics?????/ We really need you. Personally, I don't know what I'd do without some of you who have made up for the loss of MY supporter 2 yrs. ago.  

Linda Howell
Title: Re: Episodics - Don't go away..
Post by catlind on Jan 28th, 2003, 3:38pm
I personally can't understand how anyone COULD leave.
Even when I'm pain free, I've found such love, caring and understanding with this family, and gotten to know so many so well, that I don't see how I could just drop off after my cycle ended.

That's just me, I tend to be rather loyal though.
I was one who cried and cried when I read the first pages of intro to this site.  I tried to follow the rules and I was accepted without question and given wonderful advice and help - I can't imagine my life without it including my cluster family.

Just my 2 cents worth

Cat
Title: Re: Episodics - Don't go away..
Post by Bob P on Jan 28th, 2003, 4:04pm
These are responses to the "Do you have any skills you may be willing to give to OUCH" in the membership form:

Writing skills

My company provides OUCH UK internet services. Anything I can do to help?

I am a certified translator (English to French), with a specialization in computing and Web site translation/building.
artist..

I am an EMT

I am the Vice President & Chief Information Officer of Mobile Medical Vehicles, Inc. and have an enormous amount of contacts within the medical community.  I also posses a wide variety of techincal skill in various areas of information systems.

I have a chemistry/research background and would be pleased to assist cluster treatment in any way possible!!!

Not at the present time.

majored in fine art while in college.

anything about it systemintegration :)

Director, Actor, Sommelier, Outdoor Survivalism, Professional Blackjack, Photographer

I'm a construction super and a pretty good carpenter

tecnical support for internet service providers

using native plants to help with the headaches

I wish I did.  I've have had Clusters for 20 yrs.  

? I am a telecommunication Specialist

Batting 1000 in the wold og grant writing

construction

I am an excellent writer if that would help you in any way...

Hobby metal smithing/knife makeing and novelties

I've had cluster headaches for approx. 25 years on and off, and right now

I am a compounding pharmacist, Expert in pain and abortive medications for Cluster and Migraine headaches.  I can source inexpensive "triptans" and make hard to find or discontinued drugs for headaches.  I would like to be on your medical advisory board.  Additional E-mail address is: Cdetwi2389@AOL.com

teacher   =)

I have had training in public speaking and would be happy to offer my services in this area for conferences, etc.

Yes.  Many various business skills, and techical expertise, and considerable resourses that I would gladly donate to a group that shares my pain ;)

I'm an RN, I'm a writer and do some cartoon type artwork.

information security specialist... i don't know if you need those talents, but ya never know

Writing/editing/communications skills

I am an actor and a singer (esp. children's music). I would love to entertain the young CH sufferers.

Software Engineer

legal training

Much Information

Postdoctoral Fellow in Pain managment, Pharm.D.

Preacher

I am a General Physician living working as a project manager and research assistant. I am not sure in what way to help, but am open to suggestions.

? Computer building/repair, electoronics eng, security - fire expert, CAD  

I know portuguese because I'm from Brasil and English is my second language. So i can help maybe to translate something to Portuguese or help you from the website to contact people with CH from here!

Web Hosting and Web Design.

Shaman, doing (psychic) healing on those who ask for help

Graphic Design (print)

Local Organizational and Planning Experience

I would love to speak to groups to educate on cluster headaches

researcher

Professional Singer, Web-Designer, Computer Consultant.  Also, writing skills for use in product literature and brochures

graphic design and writing

Sales And Marketing Skills

Have had clusters for30 years and have used many meds, could give advice for chrobnic sufferers.

Software Design Engineer

I started to make the very first Hungarian CH website and i'd like to work it. We (Hungarian CH-ers) have no organization, club or forum yet.

empathy?

Registered Nurse currently employed in a pain management center

Sure.  Let me know what you need.

IAM A GREAT TALKER
Title: Re: Episodics - Don't go away..
Post by Bob P on Jan 28th, 2003, 4:05pm
and more:


html and programming languages

I am a lyricist, poet, dreamer.......I have written poetry about the pains in my head.  Wish I could find it.  Maybe I'll do that this weekend.  Also I am having some minor results with natural supplementation.  Go to www.southern-heritage.com/111024 to view my site.  Some of the products are heling me tremendously.  Would like to share my results with others.

I can help with any sort of mailouts, data entry, etc.

chronic cluster/9 years of guinea pig great at couseling people through epis.web  site designer

i can relate to other v.c. people

I can make graphics.  I'm not too bad at light editing (ie spell checking, proof reading, reorganizing)

Prayer

I work on computers all day at my job and also alot in the evening at home.  I would be happy to help with typing information or anythong of the sort.

Like what? I can stuff envelopes and help at a convention if I can afford to go, or maybe design a t shirt????

Artistic - help with website ?

Retired newspaper editor

I am a Microsoft Engineer and I am an artist of some skill.

Medical transcriptionist 25+ years

computer skills, especially keying numbers accurately and quickly.  i'm sure i have other talents... just don't know what they are!

MS office, MS Access

I would like to revisit this and support at a later time.

I have a computer and I have a desire to help people understand the pain that cluster headaches cause. I would like to help somehow.

high pain theshold from 14 years of torture

computer programming in c/c++

im a indie wrestler and lead in a band so when we do shows i can pass out stuff to the crowd

I'm a whiz-bang typist, fair writer.  Just let me know what you need, and I'll tell you if I can do it.

i am out going friendly and strong minded u need any people like that?

I am a golf instructor....you tell me.

Scheduled speaker at this year's meeting in Vancouver

writer,Aircraaft Engineer,carpenter, etc

Artistic ability, web design

I can speak publicly very passionately about causes!

I also have extensive knowledge on both epilepsy and epidermoid brain tumors.

20 Yrs Internet Connectivity, Networking, Computing, Design, Development, & Consulting

I would definately like to learn more. I am pleased to see my Dr.s'name on this site. Dr. Hurt.  I mentioned the success of my surgery on another site and I sware I would havebeen crucified if I did I personally.  Keep up the good work of treatments that worked. Beautiful!!!!

I have skills as a programmer in Microsoft products.

I am computer savvy

I am a good writer, I have been involved in helping grass roots efforts mainly in education, but know how to organize.Have lobbyied in state capital again for education.Helped with grant writing long ago, agian in education.Good at fund raising.Can and will offer any services to this organization to help in any way fit.Chairman of Local School Council in Chicago for years.

Video editing.I have started a video editing business on the sidebut I can only do it on a very limited basis.Could only commit to a project, depending on what elseis going on with me and my family.(Not to mention if I'm dealing with a cluster! :)

Art/feedback on my symptoms and experiences of CH for 10 years

whatever i can do to help...

SILENT PRAISE DANCING AND SINGING

Chef

What do you need done?  I don't do windows

Unrelated, but yes... Many years of computer + related field(s)experience.

Only my experience of surviving, and being cured.

Don't know of any, but willing to help.

Experienced actor/voice-over artist (if it ever comes to making PSA's)

Web Designer, Computer Consulting, Web-Hosting, I am also a Pastor so I can lend my prayer support

better than average media editor, network specialist for wan/lan's

Audio Production of radio commercials, public service announcements, and sound tracks for film or video.

Nothing specific, just 30 years of CH suffering, techniques I use, a person people can E-Mail just to share experiences

I'm an actor and film maker.
Title: Re: Episodics - Don't go away..
Post by Slammy on Jan 28th, 2003, 4:11pm
I don't know about you..but I'm in it for the SEX!   ;D




Slammy   8)
Title: Re: Episodics - Don't go away..
Post by Mark C on Jan 28th, 2003, 4:53pm
I am such an idiot........I first read Bob's post and I thought it was YOUR resume' Bob.....I said what a fuckin resume'!!  Geeez....what an overachiever!
Slammy is my hero!!!  Nuts!
Mark

Great post Marty!
Title: Re: Episodics - Don't go away..
Post by Silver_Dolphins on Jan 28th, 2003, 5:20pm
Sorry, you are all stuck with me. I may not have a lot to say right now, but I am here. Lurking.

This website and the people on it are a blessing for me. I was at the end of my rope. You all contributed in giving me ways to cope and room to vent.

I think I am cycling down and have no idea when the next one will roll around, but I am confident the Beast isn't through with me yet. But someone might come here that I could help while I am between cycles. If I leave, how can I help them?

My biggest reason to hang around is I have a condition that wreaks havok on my life and I want it to stop. Forever. I am here 'til we are cured.

As far as special talents, I would say I am completely unafraid of rejection. I can raise awareness and money by knocking on doors, emailing, calling. The worst that will happen is I get a "no".

Who wants me to call Oprah for a special show on CH?

Silver Dolphins
Title: Re: Episodics - Don't go away..
Post by Jimi on Jan 28th, 2003, 5:37pm
I do, I do! 8)
Title: Re: Episodics - Don't go away..
Post by Charlie on Jan 28th, 2003, 5:43pm
I go door to door selling copies of my two books:  

Transsexual Tennis; or Tennis Without Balls.

Your Future In Time Travel.

In my spare time; I design Klu Klux Klan insignia and repair bagpipes.

Oh....and I sell shit rare collectibles on ebay.  

Charlie
Title: Re: Episodics - Don't go away..
Post by LTBullitt on Jan 28th, 2003, 5:50pm
Are you sure anything is wrong? For some people it's easier to leave, not just easier but the only way to cope. Forget you ever had a headache in your life, spend time with your kids, do all the things you thought about doing while in pain.
The problem is when you get hit again it tends to mentally mess you up more b/c you were used to "never being sick."
Just an idea
Title: Re: Episodics - Don't go away..
Post by cathy on Jan 28th, 2003, 5:54pm

on 01/28/03 at 17:43:22, Charlie wrote:
Oh....and I sell shit rare collectibles on ebay.  

Charlie


Ahah...thats you is it...well I won't be bidding for anymore then... ;D

Marty..excellent post me thinks...not sure that as a chiropodist I could offer much really....

Slammy ..... :-X please don't use the 's' word while my hubby is on nights it makes me think about it...lol ;D :-X
Title: Re: Episodics - Don't go away..
Post by jonny on Jan 28th, 2003, 5:58pm

on 01/28/03 at 17:50:55, LTBullitt wrote:
Are you sure anything is wrong? For some people it's easier to leave, not just easier but the only way to cope. Forget you ever had a headache in your life, spend time with your kids, do all the things you thought about doing while in pain.
The problem is when you get hit again it tends to mentally mess you up more b/c you were used to "never being sick."
Just an idea


That COULD maybe be true for someone 1-2 years in but when your talkin 8-12-20 years in you never forget what you have, forgetting those that helped you is a crime. Only to come looking for help from the people that you punked off because you was PF and they were not.

JMHO

................................jonny
Title: Re: Episodics - Don't go away..
Post by LTBullitt on Jan 28th, 2003, 6:04pm

on 01/28/03 at 17:58:55, jonny wrote:
That COULD maybe be true for someone 1-2 years in but when your talkin 8-12-20 years in you never forget what you have, forgetting those that helped you is a crime. Only to come looking for help from the people that you punked off because you was PF and they were not.

JMHO

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


yea man, i dunno I've done 13 years now and can still forget for a few months at a time
maybe alot is denial mixed in with mental problems well it is with me
agreed, don't leave your friends hanging man
Title: Re: Episodics - Don't go away..
Post by jonny on Jan 28th, 2003, 6:08pm

on 01/28/03 at 18:04:13, LTBullitt wrote:
mental problems


Join the crowd.....LMMFAO!!!! ;D

...........................jonny :D
Title: Re: Episodics - Don't go away..
Post by LTBullitt on Jan 28th, 2003, 6:15pm
Why is it never the zany madcap fun it is in movies? Instead of the eccentrik clothes and goofy behavior it always involves blood and other nasty rituals.        :(

damn, I messed up the thread
its what I do
I can't leave friends behind, I don't have any
Title: Re: Episodics - Don't go away..
Post by jonny on Jan 28th, 2003, 6:28pm

on 01/28/03 at 18:15:51, LTBullitt wrote:

I can't leave friends behind, I don't have any


WTF am I, chopped liver? ;D

....................................jonny :D
Title: Re: Episodics - Don't go away..
Post by LTBullitt on Jan 28th, 2003, 6:30pm

on 01/28/03 at 18:28:58, jonny wrote:
WTF am I, chopped liver? ;D

....................................jonny :D

Of course not.
Thank you.
Title: Re: Episodics - Don't go away..
Post by jonny on Jan 28th, 2003, 6:43pm
Thanks nothing, Bro

Everyone here is a member of my family, some dont like like the way I post and thats cool. I will even help those people out need be.

If someone can get by my crassness they will never find a better friend.

Ok, im done patting my back.....LOL ;D

.................................jonny :D
Title: Re: Episodics - Don't go away..
Post by Brassbear on Jan 28th, 2003, 7:09pm
If someone can get by my crassness they will never find a better friend.

True jonny, true.

I'm still here, been watching but not posting. Dealing with this the best I can. My vision gets screwed up with the beast tearing chunks out of my head. Works been rough and still waiting on neuro.

I have a few abilities. I'm a writer. An amatuer sci-fi cartoonist. An RN and I do so of the shamanic energy work. Do some leather work.

Working on some sew on patches to sell to make some coin for OUCH.

If it were not for you folks I would have had a lot worse time of this. I'll be here as a supporter when/if this cycle ever ends.

Mary and I are here for as long as we are welcome.

Michael
Title: Re: Episodics - Don't go away..
Post by CathiP on Jan 28th, 2003, 7:47pm
Marty-
Great post! Glad you brought it up. Everyone is capable of providing SOME help- nothing is too big or too small to discount.
As for me, just point me at it...but you know that, don't you?
Well, except for Charlie's thought, or Slammy's..........
I've gotta draw the line, there ;)
thanks for all you do, Marty!
Cathi
 
Title: Re: Episodics - Don't go away..
Post by catlind on Jan 28th, 2003, 7:56pm
There is another part to this that hasn't yet been addressed in this thread.

Those of us that are episodic, we NEED to stick around, and to tell our stories of life without CH when out of cycle.  It gives me HOPE that I can get through my cycle and again enjoy the things that life has to offer me.

Not every thread here is about the pain and suffering, and that's why this place is so wonderful.  Because of people like Charlie who haven't been hit in 12 years, and others who tell us of good news like new additions to their families, and weddings, and the good things in life.  That hope is critical to keeping my mental stability while I'm in cycle.  

:)

Cat
Title: Re: Episodics - Don't go away..
Post by paul_b on Jan 28th, 2003, 8:07pm
I do crisis counseling and have been at it a long time. Excellent listener and can usually hone in on the problem very quickly. PAIN ain't the problem. We either deal with it or we don't. It is the DON'T part where I can be of help.
Title: Re: Episodics - Don't go away..
Post by marty on Jan 28th, 2003, 9:37pm
Wow..

I went to sleep for a few hours and look what happened to this thread..

Anyway, as Mark C did, when I first read Bob_P's post I thought: "All we need is Bob"! As I later came to understand, when I read the entire post, was that these are OUCH members offering their services.

Bob,

1.  Have the OUCH BoD and the different committes actively contacted and made use of these individuals and their skills?

2.  Is there a solid, step by step plan by OUCH, that covers the "attack" on the Insurance Companies, the Medical Community etc?


It is not my intention to be a pain in the butt, I just have a feeling that by using all our rescources, we can keep a lot of members by giving them something meaningful to do and at the same time we will bring OUCH forward.

I am a pain in the butt.. right? ;D

Marty  
Title: Re: Episodics - Don't go away..
Post by Opus on Jan 28th, 2003, 9:57pm
Marty,
  When I was in my last cycle I thought I would never be here when I was pain free. I was wrong and continue to check this board while pain free. There are just too many peaple to help. Also thanks for all you have done for Jill.
              Opus ;D
Title: Re: Episodics - Don't go away..
Post by tgz23 on Jan 28th, 2003, 11:39pm
I'm new to the board, episodic and I think I'll be done with this present cycle soon. The whole PF thing is a strange one. During this cycle I went PF for a week, thought the Beast was gone He just went to the other side of my head. You really do forget about how bad the pain was until you get hit again. It's unreal. I only know a handful of names and don't feel at home yet. Marty made an excellent point though. It's only in everyone's best interest that we continue to help each other PF or not. In the back of my mind I now know that I'll be suffering again. Knowledge is power, I'll try to stick around and keep on learning.   Tim
Title: Re: Episodics - Don't go away..
Post by jmorgan52 on Jan 29th, 2003, 1:46am
I've been around for almost a year now. 10 months PF but I NEVER forget about the next bout looming. I am always looking for the next good idea or possible breakthrough in the treatment of CH.

I am also here for the long term to bug you about my own ideas for a cure, even though most seem to think they suck! 8)

I got help and support from some of the meanest SOBs on this site :D when I was feeling really  :'(

Thanks then to all you mean bastards ;D You really helped me a lot and still do without knowing it. You made me think hard (ouch) and dig deep to try and cure myself if possible. The only support I ever had in the past 40 years for this problem was from family and friends, but they never really understood just what this affliction is really like. You guys do and I love that.

I even smile at Jonny and Ted and Ueli now and then.  ;D

Cheers mates, you are not getting rid of me anytime soon. I love all of you. (yeeuuck!)

John
Title: Re: Episodics - Don't go away..
Post by kim on Jan 29th, 2003, 7:36am
I can do a one-handed cartwheel ???  Hmmm.  Let's see, I am really good at annoying people, I can write a perfectly unintelliglble essay............ ;)............thinking................ ::)Strange........., nuttin's happening?   :D

Oh well, you'r stuck with me anyway :)
Title: Re: Episodics - Don't go away..
Post by brain_cramps on Jan 29th, 2003, 9:23am

on 01/28/03 at 19:56:49, catlind wrote:
Those of us that are episodic, we NEED to stick around, and to tell our stories of life without CH when out of cycle.


Cat, is this what you mean?

"blah, blah, blah, blah, blah, *%$&^#&^$ COLD, blah, blah, blah, blah, blah, blah,  *&^(*&^*$&#&*?! WORK, blah, blah, blah, blah, *^@@@&()$ SNOW, blah, blah, blah, blah, &$(&#*^%$*&$ RAIDERS, blah, blah, blah, &*%*&#*() WINTER"
Title: Re: Episodics - Don't go away..
Post by cootie on Jan 29th, 2003, 11:11am
Marty yer not a pain in the butt as long as ya stay away from the sparklers (ok that's nuther thread).....boy I'm so good about sayin a whole lot bout nothin on here ain't I ?? Sheesh Pam  :-/
Title: Re: Episodics - Don't go away..
Post by marty on Jan 29th, 2003, 11:19am
Cootie..

I hate when people do this to me..  

I just have to know..  

What is Sparklers ??  ???

Marty
Title: Re: Episodics - Don't go away..
Post by CathiP on Jan 29th, 2003, 11:45am
OOH,OOH, I can  answer!! Pick me, Pick me!!!

;)Martin-
First off, it's what ARE sparklers.......
Sparklers are those tiny fireworks we let our kids play with on the 4th of July. They are  small wands, meant to be held in the HAND (Pam :P!!!!), and when lit, they sparkle with different colored shooting sparks.The children wave them about till they conk out....sooner, nowadays, than when I was little.
They really don't belong where Cootie suggested-hmmmm, I know a few people I'd LOVE to do that toooo
Happy 4th of July- now, bend over!!! Has a nice ring, doesn't it??
There you have it, Marty- but I'll bet deep down in your recesses, you already knew, right?
>>>>going back to my desk now.......
Cathi
Title: Re: Episodics - Don't go away..
Post by suzy617 on Jan 29th, 2003, 12:24pm
When I was young, those sparklers were made of a thin metal strip.  I imagine that would still hurt alot more then those traffic cones  ;D

Maybe we just ask Echo, he might know... ;)

suzy

oh yea, your right Cootie, wrong thread, LOL.
Title: Re: Episodics - Don't go away..
Post by cootie on Jan 29th, 2003, 1:13pm
Sparkler recall......'warning warning Will Robinson'....jus in case anyone was gonna try the sparker event at home..............(wrong thread I know) Pam  ;D

http://www.thelouisvillechannel.com/money/1852240/detail.html
Title: Re: Episodics - Don't go away..
Post by cathy on Jan 29th, 2003, 1:35pm
Wow...cootie...
sp08, sp14, sp20...recalled them all..... imagine...mummy mummy is it supposed to burn all the way past my knuckles.. ??? ???   well you know bonfire night just wouldn't be the same if one of the kids that you gave a sparkler to, didn't end up touching the end just once after it's gone out... JUST...to see if it's still hot...guess the fact that there fingers then become permanently stuck to the end of it is a bit of a give away... ;D

Yeah yeah wrong thread heard it all before...lol ;D ;)
Title: Re: Episodics - Don't go away..
Post by don on Jan 29th, 2003, 3:16pm
Marty, I couldn't agree more and I am proudly guilty of taking someone to task after leaving for an extended time and then coming back looking for support.

One point though. State Chapters and such are part of OUCH. This message bopard is a sounding board for OUCH and DJ graciously (never thought I'd call him gracious) allowsw the MB to be used for OUCH purposes.

Being here and being a member of OUCH can be two differant things.



Quote:
If someone can get by my crassness


I heard a troupe of Scandanavien circus midgets with good lube have already got by your crassness.     ;D ;D ;D ;D
Title: Re: Episodics - Don't go away..
Post by Lapsi_Harmaahapsi on Jan 29th, 2003, 3:59pm
Don's sig:

"That which doesn't kill us..............will probably take another shot at it. Keep your eyes peeled. "

Stumbled into this yesterday:

That which doesn't kill you makes you wish it did.

kind of like this too:

That which doesn't kill you will probably cripple & maim you.

Positive thinking! There's allways a (worse) tomorrow ;D

(and I'm still mostly PF..)  
Title: Re: Episodics - Don't go away..
Post by Mark C on Jan 29th, 2003, 5:31pm

on 01/29/03 at 15:16:16, don wrote:
I heard a troupe of Scandanavien circus midgets with good lube have already got by your crassness.     ;D ;D ;D ;D


LMFYBO!
Title: Re: Episodics - Don't go away..
Post by domm on Jan 29th, 2003, 7:47pm
Marty and all - I'm not going anywhere. These people and this site saved my life. If I can help just one person, then somehow I feel like I have given back some of what I have taken.

You have a good soul, Marty. Thanks for starting the thread.
PFDANs
domm
Title: Re: Episodics - Don't go away..
Post by marty on Jan 29th, 2003, 8:39pm
Don..

I fully understand that this MB and OUCH are two different things.

By me using the MB instead of the OUCH board was simply to reach as many as possible and to find out what others were thinking. The reason for bringing OUCH into the equation was that if all the talent and experience could be used in the pursuit of finding a cure for CH, then who better suited than OUCH to co-ordinate and structure it.

Bob_P posted some of the various areas in which OUCH members are active or have knowledge / experience that they are willing to share as members of OUCH.

Marty
Title: Re: Episodics - Don't go away..
Post by Ted on Jan 30th, 2003, 12:14am

on 01/29/03 at 01:46:48, jmorgan52 wrote:
Thanks then to all you mean bastards ;D ...I even smile at Jonny and Ted and Ueli now and then.  ;D


I'd always be happy to oblige and be a mean bastard to you, you detoxing, smokeless, veggie freak. :-)
Title: Re: Episodics - Don't go away..
Post by jmorgan52 on Jan 30th, 2003, 1:02am
Hi Ted

I love you too ;D

Rather be a detoxing, smokeless, veggie freak than the whining,  :'(  pain filled, suicidal, disfunctional fucker like I was early this year.

My life has changed for the better since joining this MB. I realised that the only real help was Imigran/Imitrex and that is just a compromise for me. No one including the medical fraternity has a cure yet so it forced me to look for a drug free answer for myself. I just hope I found it. Time will tell.

If I am still pain free from all this effort in 5 years time I want you to grovel  8)

If I get hit this year I promise to grovel to you. How's that?

I just want to add that I am not that fanatic. I am just a lot more moderate. I still let my hair down especially at weekends, but I do try and be quite strict about what I eat Mon-Thurs. Every 3 months I do my detox for a week. It is not too bad but does require discipline. If I can get past easter without getting hit it will be worth all the effort.

John
Title: Re: Episodics - Don't go away..
Post by don on Jan 30th, 2003, 1:10pm
Agree with you 100% Marty.

Just didn't want to associate those that only come to the MB when in need and leave when their need is met with OUCH.
Title: Re: Episodics - Don't go away..
Post by cerebus on Jan 31st, 2003, 10:48am
 Episodic, out of cycle, and still here.

Ifn it makes any of ya feel any better. Hell , if I went into a several year remission, I don't think I'd leave. Not even sure I COULD.

Cerebus
Title: Re: Episodics - Don't go away..
Post by SommelierCH on Jan 31st, 2003, 1:05pm
Marty-San,

I was also thinking about how to keep the episodics interested in this site, out of cycle, when I suggested a Cluster Art and Photography Gallery, so people would look in from time to time, to see what new pictures had been posted. Add an on-line auction, through out the year, and we could keep more people interested in our site. The message board alone, may not accomplish this.

David J.
Title: Re: Episodics - Don't go away..
Post by Jill on Jan 31st, 2003, 1:20pm
Hey all...

I wanted to post on this earlier but was a bit hesitant, my words didnt seem to fit into the topic as well.

But then it came to the top again and well here I am.  ::)

I just wanted to say that those on this site have all been my saviors and each one has made some impact on how I view things and how I cope. I can never say thanks enough to those and that is implied for both chronics and episodics the same.

Isnt it always said "take what you need and leave the rest" but I seem to think that we should add the part about helping when able. My goal is to be here when I am painfree, well maybe helping others when not hit so hard...dont want to hope for too much. :-/ I want to give back what I can because I can and I dont want to know where I would be if people like you all hadnt done the same from me.

And one last part, I am inspired by those that are chronic or those episodics who have this uncanny ability to help others when they themselves are in pain. I have yet to find this, have yet to learn how to accomplish this but maybe one day I will.  ;)

Okay, sorry, this is long but I wanted to end with this quote because it seems to fit so well, to me it does anyways. I am not sure who wrote it but it is one that I never forget.

"If you learn from your suffering and really come to understand the lesson you were taught, you might be able to help someone else who is now in the phase. Maybe that is what its all about after all."

Thanks to all,

Jill
Title: Re: Episodics - Don't go away..
Post by bob_e on Feb 1st, 2003, 1:34am
Some of us just hate to type.But really need ideas we just cant get from our doctor.Thanks to everyone who posts.    bob
Title: Re: Episodics - Don't go away..
Post by jonny on Feb 1st, 2003, 3:23pm
WHA!!!!!I dont like to type........Dude, what are you an idiot?

I type with two fingers.....Hunt and peck my way through this site for over three years.

WHAAAAA!!!!!!!!!!!!

SHUT THE FUCK UP AND TYPE........if not you dont have CH

..................................jonny
Title: Re: Episodics - Don't go away..
Post by cathy on Feb 1st, 2003, 5:42pm

;D
Welcome to the board...bob_e see jonny has welcomed you already...lol

He doesn't actually use two fingers cos he's only got hooves...apparently..lol  ;D ;D  ;)
Title: Re: Episodics - Don't go away..
Post by SFChris on Feb 2nd, 2003, 2:28am
Pain free since last August, and still log in every day.  Haven't had much to offer lately, but I'm here when needed.  Peace, love and granola to all,
Chris   8)
Title: Re: Episodics - Don't go away..
Post by Linda_Howell on Feb 2nd, 2003, 6:35am
Chris......."peace, love and GRANOLA?  LMAO!!!!!


  No wonder us Californians aren't taken seriously.  
Don't mind me though......I've got to go catch the next wave.    Surfs up!!!!!!!!!  

LindaH
Title: Re: Episodics - Don't go away..
Post by RevDeFord on Feb 2nd, 2003, 8:03am
I am still in episode, albeit a slight one, and I am still here, but I have been getting hammered at work.  I fired 2 staff members and havent replaced them yet.  Been getting to work at 6 a.m. and home at 8 p.m. 6 days a week.  The time I am home the last 2 weeks I havent been in front of the computer.

I don't know how much longer I can keep up this pace.  Thank you Mark for your email.  Hopefully I can get some folks hired and trained so I can be back here alot.
Title: Re: Episodics - Don't go away..
Post by pimmony on Feb 3rd, 2003, 5:38am
I only have had one episode and  the neurologist is waiting on me to have another - if I ever do - but I read the board most every day (GMT time).

Even if I do not have another episode I will not go away.   Here is why ...

There are passages in our lives which mold us, events of a magnitude to alter how we think, our awareness, how we deal with other people and how we hone our coping skills.

Cluster headaches are of this magnitude and they are shocking and seemingly insurmountable.  Yet every day on this board people prove how resilient and human they are and this is the reminder we need.  I do not want to forget - not in the morbid I will roll in it forever sense but because it shaped a part of me.

As do you.  

I do not know how it will be if I experience more episodes, how my thinking and responses, feelings and attitude will be affected.  My late partner used to say he could see things shaping with me because he was further down the road (he was a presumptious smart ass actually, but I loved him and he had no clue about how I was shaping because he never walked a mile in my shoes).  In this case you are further down the road because there is a common condition (worse, better, longer, just similar).  I need this and when I posted first you responded with generosity of spirit and helpfulness.

I do not read every day because I am needy now, I read because it has meaning and when I can contribute I shall.

The artwork goes on, the book goes on, the cluster recording diary goes on.

It is a matter of time, there does not seem enough.

Also I am like a snail, first sign of ... anything ... and I pop back in my shell.  That will take time too.
Title: Re: Episodics - Don't go away..
Post by oringkid on Feb 3rd, 2003, 6:39pm
I started my remission back at the end of April last year and am still pain free.  And I am still here.  (although went through some very rough times here lately, hopefully that is all ironed out!)

I love this place and I love the people here!

Glad to be back from on and offsville!

Sherry
Title: Re: Episodics - Don't go away..
Post by jonny on Feb 3rd, 2003, 7:08pm

on 02/03/03 at 18:39:42, oringkid wrote:
I love this place and I love the people here!


And we love you, Kid!!!

Nice to see you my friend ;D

...........................jonny
Title: Re: Episodics - Don't go away..
Post by Slammy on Feb 3rd, 2003, 7:21pm
Yep!  We love you too, Sherry!

Especially,  

"Those Lips!   Those Eyes! "

;D




Slammy   8)
Title: Re: Episodics - Don't go away..
Post by oringkid on Feb 3rd, 2003, 7:28pm
Thanks you guys!

Sherry
Title: Re: Episodics - Don't go away..
Post by CathiP on Feb 3rd, 2003, 7:51pm
Sherry-
Seems I'm not the only one pleased to see you posting again!
I do hope your troubles are behind you, and that you'll be around.....BUT, not in pain!
Again, so glad you're back!
Cathi


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.