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Topic: Episodics - Don't go away.. (Read 1578 times) |
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marty
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Episodics - Don't go away..
« on: Jan 28th, 2003, 2:40pm » |
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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
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| « Last Edit: Jan 28th, 2003, 2:43pm by marty » |
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brain_cramps
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Re: Episodics - Don't go away..
« Reply #1 on: Jan 28th, 2003, 2:52pm » |
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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?
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marty
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Re: Episodics - Don't go away..
« Reply #2 on: Jan 28th, 2003, 3:05pm » |
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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
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brain_cramps
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Re: Episodics - Don't go away..
« Reply #3 on: Jan 28th, 2003, 3:12pm » |
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on Jan 28th, 2003, 3:05pm, 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.
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Why would he not be allowed to tell anyone?
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marty
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Re: Episodics - Don't go away..
« Reply #4 on: Jan 28th, 2003, 3:15pm » |
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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
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Linda_Howell
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Re: Episodics - Don't go away..
« Reply #5 on: Jan 28th, 2003, 3:31pm » |
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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
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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catlind
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Re: Episodics - Don't go away..
« Reply #6 on: Jan 28th, 2003, 3:38pm » |
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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
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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Bob P
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Re: Episodics - Don't go away..
« Reply #7 on: Jan 28th, 2003, 4:04pm » |
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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
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Bob P
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Shut up Bob!
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Re: Episodics - Don't go away..
« Reply #8 on: Jan 28th, 2003, 4:05pm » |
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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.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Slammy
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Re: Episodics - Don't go away..
« Reply #9 on: Jan 28th, 2003, 4:11pm » |
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I don't know about you..but I'm in it for the SEX! ;D
Slammy 
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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Mark C
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Onward through the fog.
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Re: Episodics - Don't go away..
« Reply #10 on: Jan 28th, 2003, 4:53pm » |
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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!
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Silver_Dolphins
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Re: Episodics - Don't go away..
« Reply #11 on: Jan 28th, 2003, 5:20pm » |
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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
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Jimi
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Re: Episodics - Don't go away..
« Reply #12 on: Jan 28th, 2003, 5:37pm » |
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I do, I do!
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Charlie
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Re: Episodics - Don't go away..
« Reply #13 on: Jan 28th, 2003, 5:43pm » |
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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
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LTBullitt
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Re: Episodics - Don't go away..
« Reply #14 on: Jan 28th, 2003, 5:50pm » |
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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
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cathy
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Re: Episodics - Don't go away..
« Reply #15 on: Jan 28th, 2003, 5:54pm » |
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on Jan 28th, 2003, 5:43pm, Charlie wrote:
Oh....and I sell shit rare collectibles on ebay.
Charlie |
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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 .....  please don't use the 's' word while my hubby is on nights it makes me think about it...lol ;D
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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jonny
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Re: Episodics - Don't go away..
« Reply #16 on: Jan 28th, 2003, 5:58pm » |
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on Jan 28th, 2003, 5:50pm, 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
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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
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LTBullitt
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Re: Episodics - Don't go away..
« Reply #17 on: Jan 28th, 2003, 6:04pm » |
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on Jan 28th, 2003, 5:58pm, 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
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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
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jonny
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Re: Episodics - Don't go away..
« Reply #18 on: Jan 28th, 2003, 6:08pm » |
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on Jan 28th, 2003, 6:04pm, LTBullitt wrote:
Join the crowd.....LMMFAO!!!! ;D
...........................jonny 
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LTBullitt
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Re: Episodics - Don't go away..
« Reply #19 on: Jan 28th, 2003, 6:15pm » |
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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
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jonny
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Re: Episodics - Don't go away..
« Reply #20 on: Jan 28th, 2003, 6:28pm » |
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on Jan 28th, 2003, 6:15pm, LTBullitt wrote:
I can't leave friends behind, I don't have any |
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WTF am I, chopped liver? ;D
....................................jonny
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LTBullitt
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Re: Episodics - Don't go away..
« Reply #21 on: Jan 28th, 2003, 6:30pm » |
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on Jan 28th, 2003, 6:28pm, jonny wrote:
WTF am I, chopped liver? ;D
....................................jonny
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Of course not.
Thank you.
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jonny
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Re: Episodics - Don't go away..
« Reply #22 on: Jan 28th, 2003, 6:43pm » |
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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
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Brassbear
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Re: Episodics - Don't go away..
« Reply #23 on: Jan 28th, 2003, 7:09pm » |
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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
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CathiP
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Re: Episodics - Don't go away..
« Reply #24 on: Jan 28th, 2003, 7:47pm » |
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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
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