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Topic: Should I resist the temptation...? (Read 313 times) |
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sandie99
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Should I resist the temptation...?
« on: Aug 28th, 2007, 3:52am » |
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I just found out that one of Finland's members of the parliament/senator is selected to be the president of Finlands Migraine Assosiation - the organization in which all Finland's clusterheads belong to because we don't have our own national organization (yet).
And all the members of the parliament are easy to reach via email... so I feel like emailing this lady and ask her what does she know about ch (after all, as the president of the organization, it's her JOB to know!  ) and what she plans to do to help us, the Finnish clusterheads! 
Should I do it... or should I wait until the caffeine wears off and I feel politically correct again...?
Or maybe I should give her little time... After all, there are many HAs to learn about...
Hugs & PF days to all,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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sandie99
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Re: Should I resist the temptation...?
« Reply #1 on: Aug 28th, 2007, 4:12am » |
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Now, I have corrected one huge mistake: Finland's Migraine Assosiation has a links section, but it doesn't have ch.com or ouch in them! 
Oh no, they DO HAVE specific ch links, but they just have one Finnish site, which doesn't even have a proper message board, just simple "letters" section... and a link to a video which one cannot watch if you have a modem access. 
I just sent them feedback about the ch links section. Let's just see how long it takes them to update it!
Taking the grassroots step by step,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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ski2k
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Re: Should I resist the temptation...?
« Reply #2 on: Aug 28th, 2007, 4:26am » |
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Hi Sandie!! I don't think it'd be out of line at all to ask about her CH knowledge. We all do it everytime we visit a new doctor, so why not someboby who is SUPPOSED to know about the various headaches. Ask away!!
It probably wouldn't hurt to mention the links for this site, and OUCH. I'm pretty sure all your countrymates and fellow CH sufferers would like to find out as much as they can about this condition. Let her know how inadequete that Finnish site is! Help her "get her feet wet" right away!
Just my opinions....
PFDAN
Adam
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sandie99
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Re: Should I resist the temptation...?
« Reply #3 on: Aug 28th, 2007, 4:45am » |
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on Aug 28th, 2007, 4:12am, sandie99 wrote:Now, I have corrected one huge mistake: Finland's Migraine Assosiation has a links section, but it doesn't have ch.com or ouch in them!
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Ok, now I'm impressed! I just got an email from a woman who leads the organization in the practical level. She said that the international links I provided will be added to the links section! Yahoo!
To be honest, I wasn't that sure that those feedback emails are read... but they are read and replied. Wow! 
This site and OUCH mean a lot to me, so it felt absolutely horrible that my fellow Finns might not have any information about them. I'm glad that soon they will find those links from a official site.
PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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sldrswyfe
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Re: Should I resist the temptation...?
« Reply #5 on: Aug 28th, 2007, 5:06am » |
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That's GREAT Sanna!!
I, for one, am proud of you. We need you to advocate...and I say speak up, just as you said, your fellow Finn's that are sufferers may have nowhere to go.
Good Job Sanna. 
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sandie99
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Re: Should I resist the temptation...?
« Reply #6 on: Aug 28th, 2007, 5:18am » |
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It's actually a joke that we Finnish clusterheads do not have a orginization of our own. It took the Migraine Association a long time to even print a simple ch leaflet.
Luckily one neuro actually updated it now, so there's proper 02 info for an example.
Before that it wasn't even common knowledge that clusterheads (whose neuro actually gives them the subscribtion) will get 3 moths of the treatment free - i.e. their expenses will be covered by national organization KELA when they provide copies of the neuro's letter and their oxygen tank receipt.
And Adam, it's not just you. That it is not just quick, it is superquick!
Sanna
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| « Last Edit: Aug 28th, 2007, 5:18am by sandie99 » |
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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sldrswyfe
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Re: Should I resist the temptation...?
« Reply #7 on: Aug 28th, 2007, 5:23am » |
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I couldn't think of a better person to educate others, and talk to than you Sanna.
You would be wonderful at talking to Drs, Ch'rs...add your talent of being a writer/journalist...and we've got ourself a Finnish Rep!
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| « Last Edit: Aug 28th, 2007, 5:24am by sldrswyfe » |
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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DennisM1045
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Re: Should I resist the temptation...?
« Reply #8 on: Aug 28th, 2007, 7:22am » |
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Way to go Sanna! Get involved and invest that boundless energy of yours.
Quote:| we've got ourself a Finnish Rep! |
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+1 on that!
-Dennis-
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Kevin_M
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Re: Should I resist the temptation...?
« Reply #9 on: Aug 28th, 2007, 7:35am » |
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on Aug 28th, 2007, 3:52am, sandie99 wrote: so I feel like emailing this lady and ask her what does she know about ch (after all, as the president of the organization, it's her JOB to know! ) and what she plans to do to help us, the Finnish clusterheads!
Should I do it... or should I wait until the caffeine wears off and I feel politically correct again...? |
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You write well, no need to be shy about it.
Quote:| I just sent them feedback about the ch links section. |
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Quote:| the international links I provided will be added to the links section! |
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Quote:...one neuro actually updated it now, so there's proper 02 info for an example.
Before that it wasn't even common knowledge that clusterheads (whose neuro actually gives them the subscribtion) will get 3 moths of the treatment free... |
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See what you did!!! 
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BarbaraD
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Re: Should I resist the temptation...?
« Reply #10 on: Aug 28th, 2007, 8:57am » |
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Send them Chuck's video -- that should get everyone's attention - seriously.
Hugs BD
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sandie99
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Re: Should I resist the temptation...?
« Reply #11 on: Aug 28th, 2007, 12:10pm » |
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Chuck's video... that's great idea, Barb.
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Rosybabe
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Re: Should I resist the temptation...?
« Reply #12 on: Aug 28th, 2007, 2:30pm » |
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Great Job Sanna!! we may get a lot more fellow clusterheads on this site soon thanks to you
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George_J
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Re: Should I resist the temptation...?
« Reply #13 on: Aug 28th, 2007, 6:22pm » |
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Great job, Sanna. I'm impressed that you got a response and some action so quickly.
Best wishes,
George
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Callico
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Re: Should I resist the temptation...?
« Reply #14 on: Aug 28th, 2007, 7:00pm » |
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Way to go Sanna! Between you and Svenn we'll soon have northern Europe covered! I'm impressed at the response you got! I'm still waiting after 6yrs for our former senator from IL to show up the an appointment, or at least to say something about it.
Jerry
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Charlie
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Re: Should I resist the temptation...?
« Reply #15 on: Aug 28th, 2007, 9:33pm » |
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You're a pretty good nudger, Sanna.
Charlie
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phil_h
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Re: Should I resist the temptation...?
« Reply #16 on: Aug 28th, 2007, 9:43pm » |
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You do yourself proud and all ch's are proud of your accomplishment with rapid results.....Your the journalist and can continue to make a difference for all...   phil h
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Barry_T_Coles
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Re: Should I resist the temptation...?
« Reply #17 on: Aug 28th, 2007, 9:46pm » |
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Sanna Rocks
You did well young lady
Barry
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Linda_Howell
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Re: Should I resist the temptation...?
« Reply #18 on: Aug 28th, 2007, 10:02pm » |
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Good for you girl. If you need any help in what to say should you be called upon you can ask Svenn for tips and pointers.
Do you have any idea or thought as to HOW many Ch'ers there might be in your country?
Linda
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Charlie
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Re: Should I resist the temptation...?
« Reply #19 on: Aug 28th, 2007, 10:04pm » |
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That's a great one, Barry.
Charlie
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sandie99
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Re: Should I resist the temptation...?
« Reply #20 on: Aug 29th, 2007, 3:08am » |
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No wonder the Migraine Association wanted that particular lady - she's the vice chairwoman of social and health committee, a doctor and has written a lot of articles about how medication bills should be covered. Now let's hope that she's equally willing to help us clusterheads!
on Aug 28th, 2007, 10:02pm, Linda_Howell wrote:
Do you have any idea or thought as to HOW many Ch'ers there might be in your country?
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I checked from the new Finnish clusterheadaches leaflet that the current number of sufferers is about 15.000 people. Even the Finnish Migraine Assosiation call it remarkable amount - it is a lot when we're talking about a nation with 5 million people. The figure was 2500- 3500 before.
BTW, I'm planning to watch that links - section like a hawk. I'll let you know when ch.com and OUCH are added. So far... nope.
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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sldrswyfe
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Re: Should I resist the temptation...?
« Reply #21 on: Aug 29th, 2007, 7:47am » |
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You will make a big difference in alot of lives San.
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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