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fubar
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Risky post...
« on: Dec 3rd, 2003, 2:23pm » |
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OK, I've decided to bite the bullet and announce that I have been living totally PAIN FREE for almost 2 months. I've been living the chronic life longer than I can remember, but my neurologist and I decided yesterday to call this current PF time 'total remission'.
While I'm thrilled, I know that even mentioning this to my family here will tempt the beast to come back.
Over the course of my chronic-ness, I tried so many drugs and treatments that I can't even list them all here. The things that worked pretty well include Oxygen and high doses of Verapamil+Lithium. For those who want to stay on the chronic train, those are good options. For those who want to get off that ride to hell like I did, well I don't know what to tell you. I know what worked for me but I'm not willing to recommend it to anybody. I would suggest that those who are at their ropes end check into clusterbusters, and that's all I'm going to say about that.
I will, of course, continue to post here. I have no intention of fading into the sunset and leaving my suffering family behind. I know this may be temporary, but 2 months PF time seems like an eternity to me. I'll take whatever I can get.
Love you all,
Shawn
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Tiannia
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Re: Risky post...
« Reply #1 on: Dec 3rd, 2003, 2:35pm » |
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Congrats. I know and undersatnd the fear of saying that the beast as lost your address, but I wish you the best. Hopefully I can get into a neuro (got I hate changing insurance comapnies) and get mine a bit more under control.
Tia
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miCHel
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Re: Risky post...
« Reply #2 on: Dec 3rd, 2003, 2:39pm » |
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Wow! Talk about great news!
Don't worry about that Jinx stuff, Fu. It's not true... although I am too scared and supersticious to apply that theory to me 
Anyway, enjoy the ride. I certainly hope that it's on the same highway that Charlie took!
miCHel
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Good one Scotty! Now beam down my clothes...
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Linda_Howell
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Hearing is one thing. Listening is another.
 
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Re: Risky post...
« Reply #3 on: Dec 3rd, 2003, 3:04pm » |
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Shawn,
I don't believe in jinxing something just by saying it out loud either.
2 months sound like heaven to me and I couldn't be happier for you. I'm not sure I would call 2 months a TOTAL remission, but it's certainly a great start.
LindaH, who's just about ready to talk to BobW myself.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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thomas
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jonny
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Posting about PF will never end PF, that will happen or it wont....Lets hope it dont for life!!
Good for you Bro
.................................jonny
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fubar
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Re: Risky post...
« Reply #6 on: Dec 3rd, 2003, 3:21pm » |
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I hear what you're saying Linda... 2 months could hardly be considered 'total' remission, but I've not had more than a couple PF days strung together in the entire time he has been treating me.
BTW, he is *extremely* interested in clusterbusters all of a sudden. He has virtually no hair left after pulling it all out trying to help me, so when something works he wants to know how and why. He's a good doctor. I suspect he'll consider mentioning it to other patients as an alternative to traditional medicine.
He also said that he is going to bring this up at the 'meetings', whatever that means. I suppose that neurologists actaully do meet and consult with each other from time to time. Wouldn't it be great if they started to get a clue and start tring to figure out why/how that kind of treatment works for some people?
All I know is I was willing to try ANYTHING. I would have drunk cow piss if someone told me it would cure me. I'm not joking. I would have blown my brains out if not for the mess it would leave (emotional scars and such). Again, this is not even close to being a joke.
Hell, for all I know, the clusters just stopped on their own. Who knows? Maybe they'll come back later today... anything can happen. I haven't had 2 whole months of pain free time since I was, what, 18? That was 20 years ago. This is like waking up from a coma.
-Shawn
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| « Last Edit: Dec 3rd, 2003, 3:22pm by fubar » |
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Margi
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Re: Risky post...
« Reply #7 on: Dec 3rd, 2003, 3:28pm » |
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Well, Shawn,
that's just the best news I've heard all day!! I think you've negated the jinx by publically announcing the possibility of a jinx. I'm pretty sure the cosmic forces accept that as a disclaimer and therefore process the cancellation of the jinx. No, really. 
WhatEVER the reason for your remission, I hope you're out there enjoying your pain freedom to the max. ANY pain free time for a chronic is a blessing and I hope it's contagious for the rest of the gang (chronics especially)!! Get out there and kick up your heels, Fubar!
And, ps to my littlest Twisted Sister, Miss Linda Howell. Are you telling me that you have NOT investigated the clusterbuster treatment, young lady?  I think it's time for your spanking, missy.  (Great hearing your voice last week, by the way )
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brain_cramps
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Re: Risky post...
« Reply #8 on: Dec 3rd, 2003, 3:39pm » |
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COOL!!!!!
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| « Last Edit: Dec 3rd, 2003, 3:40pm by brain_cramps » |
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Edna
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Re: Risky post...
« Reply #9 on: Dec 3rd, 2003, 4:15pm » |
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HEY!!!!!!! I am certainly thrilled for you Shawn!!!!
PF for 2 months, YOU deserve it!!!!
Jinx or no jinx........remission or not........YOU ENJOY this pf time......and know that all of us here are pulling for it to be a permanent remission for you!!
And btw........a great big THANK YOU for posting to keep us informed.
cheering for you,
EDNA (pst......hope you don't turn into Mean ole Shawn like that Charlie fellow LOL) 
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Cluster_head
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Re: Risky post...
« Reply #10 on: Dec 3rd, 2003, 4:25pm » |
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Tim
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hootchdom
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Re: Risky post...
« Reply #11 on: Dec 3rd, 2003, 4:27pm » |
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Shawn,
May the good one above bless you with the 20 greatest years. You deserve each and every one for the hell you have gone through. Enjoy each and every momement and what is not given to you take because you damn well deserve it !!!!!!!!!!!!!!
Hootchdom
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pubgirl
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Shawn
You've made my day.
Savour every day PF and try not to worry!
Wendy
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OneEyeBlind
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Re: Risky post...
« Reply #13 on: Dec 3rd, 2003, 5:16pm » |
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So happy for ya. Clusterbusters did it again !!!!!!!!!
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Tara Ann
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Re: Risky post...
« Reply #14 on: Dec 3rd, 2003, 5:34pm » |
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Wow Thats just so freakin incredible! Very, Very Happy for you!
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Roxy
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Re: Risky post...
« Reply #15 on: Dec 3rd, 2003, 5:54pm » |
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Clusterbusters is wonderful....isn't it?
I am so damn happy for you Shawn.....congrats.
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Lori
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Re: Risky post...
« Reply #16 on: Dec 3rd, 2003, 6:00pm » |
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It's great to hear such great news. I really feel for those who suffer this chronically. I couldn't imagine dealing all the time with it. So, I am happy for you and hope the beast doesn't ever revisit you!
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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Pinkfloyd
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Re: Risky post...
« Reply #17 on: Dec 3rd, 2003, 6:05pm » |
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Don't forget your maintenance dose
Feel free to pass my email addy to your neuro.
Congrats!
BobW (PF)
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Mark C
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Re: Risky post...
« Reply #18 on: Dec 3rd, 2003, 6:21pm » |
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vig
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Re: Risky post...
« Reply #19 on: Dec 3rd, 2003, 6:22pm » |
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Hey, is anyone beginning to see the pattern here?
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never, Never, NEVER quit. -Winston Churchill
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thomas
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No I don't get it, but I am a little slow.
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fubar
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Re: Risky post...
« Reply #21 on: Dec 3rd, 2003, 6:56pm » |
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vig,
Pattern? Are you talking about story-after-story of success with a clusterbuster approach?
-Shawn
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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vig
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Re: Risky post...
« Reply #22 on: Dec 3rd, 2003, 6:58pm » |
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Yes, exactly,...
hmmmmmm
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never, Never, NEVER quit. -Winston Churchill
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Charlie
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Re: Risky post...
« Reply #23 on: Dec 3rd, 2003, 7:29pm » |
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This are reel good news 
Don't plan on the thing returning. I know that's easier for episodics and jerks like me but here you are. Mine started that way.......so far so good.
Great news.
Charlie 
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There is nothing more satisfying than being shot at without result---Winston Churchill
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stevegeebe
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Re: Risky post...
« Reply #24 on: Dec 3rd, 2003, 7:36pm » |
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This is great news Fu.
Steve G
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