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Topic: no longer chronic (Read 21248 times) |
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miapet
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what doesn't kill me makes me stronger
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Re: no longer chronic
« Reply #275 on: Apr 3rd, 2005, 3:35am » |
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sorry y'all for what's happening here.
Thanks e-double, pinkfloyd, Mr. Happy, D and I appreciate your (and everyone else here) support.
I researched and read and asked questions about ANY POSSIBLE help for D . . .he was chronic from his first h/a . . .which was more than 20 years ago . . .NEVER a break . . . so when I found the information on mushrooms .. .i started reading . .and asking more questions . . and discussed it with D . . .and he finally agreed to try it . .. and guess what . . it took more than one dose .. but he went for the 2nd one . . .and now we are able to live a p/f life . . .Wishing everyone an eternity of being painfree . . no matter what method they choose . . . There is hope . . .find yours!
*positive light and energy*
miapet
edited to remove myself from the bickering and negativity.
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| « Last Edit: Apr 4th, 2005, 6:40pm by miapet » |
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Sophie
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Re: no longer chronic
« Reply #276 on: Apr 3rd, 2005, 3:36am » |
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I have a simple question also. If someone has been in pain with CH for the last 3 years, wouldn't he/she start looking for a better answer than perhaps "Lamictal" ?
I think it is very logical to start serching for an answer.
And that's why I am here. I am so proud of Mia and the way she is sharing what they learned. It takes alot of dedication to do what she is doing, and she really didn't have to do it. She could have disappeared in the sunset, laughing and pain free.
We are here to help each other. Sharing any information that might give one person some pain free time for awhile----weather it's ice or melatonin---nothing works for everyone.
positive light and energy-----Sophie
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WHERE ARE WE GOING?
AND WHY AM I IN THIS HANDBASKET?
Cluster Buster
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PCMCCK
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Pinkfloyd's quote by C.S. Lewis seems very appropriate to this site. Forgive me for daring to raise questions about the sacred mushroom. Please continue to encourage other sufferers to discontinue their medications because their doctors don't know anything any how and encourage them to take hallucinogens-by the way, I've read some of the "required reading" links suggested and I've noticed that virutally all of them have a disclaimer stating that they are not encouraging people to use hallucingenic or other illegal drugs, that they are just providing information and then go on to tell people how to grow them and take them-very morally courageous! Do any of you know the possible adverse effects that hallucinogenics can have upon someone with an underlying psychiatric illness? Perhaps that should be required reading. When someone has the 8 year break between attacks that I did when I was episodic and can prove that it was due to the use of mushrooms, then that would be something to talk about. Take whatever you want, but out of respect for others, please don't encourage them to take your drugs-that is something that should be decided between patient and doctor and my main concern is that someone will be harmed by discontinuing their treatment by their physician in favor of "unconventional" or "alternative" and unproven methods and then all of the "positive light and energy" and crystals and copper bracelets and hugs will not do a bit of good for that person. Think of your moral responsibilities and remember, the US Constitution gives us the right to express dissenting opinions, but I don't think that those are welcome here..."All for one and one for all as long as you agree with us!" Back to the lab to try to find that negative light. *g*
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Mr. Happy
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Re: no longer chronic
« Reply #278 on: Apr 3rd, 2005, 3:57am » |
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on Apr 3rd, 2005, 3:48am, PCMCCK wrote:| Forgive me for daring to raise questions about the sacred mushroom. |
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You're not raising questions. Your mind was made up before you got here, for cryin out loud.
You build your house, I'll build mine.
RJ
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May those who don't want any
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PCMCCK
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Sophie, if you would have really read my post, you would have read that I stopped the Lamictal years ago because it had nothing to do with my remission. I am very happy that "D" is in remission and hope that he remains so forever, but who knows-mine lasted a year and after my first attack I had an 8 year remission without any treatment.
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PCMCCK
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Mr. Happy, you don't sound very happy! 
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PCMCCK
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Yes, miapet, I do have faith in my doctors and yes, I still have pain, as do most chronic CH sufferers-but if I read you correctly, we who still have pain should not write that "crap" on this site. Please forgive me, I didn't know that that was one of the rules-please show me where it says that.
I don't care what you have "D" take, my concern is encouraging others to reject their doctors, just as you have now essentially told me that I'm an ass for still letting my doctors treat me and taking "conventional" medicine-for one who espouses *positive light and energy* you seem to be one intolerant person. If you don't mind-of even if you do, es ist mir wurst, I will continue to write about having pain, crap or not. I suppose that you would prefer that the rest of us untermenschen who have pain and don't do what you tell us to should just stop writing to the site as well. Typical new-age facist you are, chia-pet. I don't recall ever suggesting that you stop posting. I actually enjoy reading your stuff-gives me a good laugh and takes my mind off of my pain-hey, that's non-traditional and my doc didn't prescribe it! Maybe I'm slowly coming around to your way of thinking (NOT)! Don't get your knickers in a twist so easily, life is too short. 
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Flash
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*cough*
12 years
10 prevented episodes (but you can just pretend that I went into spontqaneous remission)
10 episodes aborted within the first week (but you can just pretend I'm a lying sack of shit that hangs out here from time to time because he's got nothing better to do... I mean it's not like I've got 3 motorbikes in my garage vying for my attention or anything... DOH)
2 episodes aborted within 10 days
2 episodes running full term
As for psychosis... ever read the bit about SUB HALLUCINOGENIC DOSE?
We have treatment reports from over 200 people. None of them are psychotic.
Are you aware that hallucinogenic drugs are also being used to treat certain mental illnesses?
Are you aware that they are being used to treat alcohol and drug additiction, including addiction to conventional prescription meds?
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Ueli
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PCMCCK,
*positive light and energy* is a metaphor used by miapet to express her good wishes to all.
If you want to interpret it in terms of physics, please do it correctly. A battery stores chemical energy and the + and - marks on the contacts have nothing to do with energy, they indicate the polarity of the electric potential, and the direction of the current when a load is connected.
A (metaphorical) example of negative light: your posts shed negative light on its author.
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Pinkfloyd
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Re: no longer chronic
« Reply #284 on: Apr 3rd, 2005, 1:38pm » |
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on Apr 3rd, 2005, 3:48am, PCMCCK wrote:Pinkfloyd's quote by C.S. Lewis seems very appropriate to this site. Forgive me for daring to raise questions about the sacred mushroom. |
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No one has a problem with questions about the sacred mushroom. It's encouraged actually. Personal attacks are a different story around here. I guess if you can't find substance to attack the message, the messenger is the next best target. Childish, but you must have expected to reap what you had sowed.
on Apr 3rd, 2005, 3:48am, PCMCCK wrote: Please continue to encourage other sufferers to discontinue their medications because their doctors don't know anything any how and encourage them to take hallucinogens-by the way, |
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I will do so, thank you for the suggestion.
I understand this all sounds much like a snake oil. All the positive testemonials. We have often stated (should you ever do any research here on old threads) that we learn more from the unsuccessful treatments and encourage those to be reported.
This is one thread, basically about one person's continued success. Please don't anyone take this one report as enough evidence for the efficacy of mushrooms. Don't make it out to be any more than it is.
Do I think hallucinogens are safer than eating enough prednisone to cause AVN? Yes. Safer than implanting electrodes? Yes. Safer than chemically, radiologically or surgically destroying the offending nerves? Yes. Longer lasting than most if not all conventional meds? Yes. Safer than drilling holes in their skulls to wrap nerves in teflon? Yes. Safer than the much touted triptans? Yes. All things prescribed by doctors. Doctors didn't outlaw hallucinogens, polititians did. They have to follow the law if they want to continue practicing medicine.
Now, water is also safer than all those things I listed, but water does not break cycles, mushrooms do in many cases. As with every decision in life, the risks and benefits must be weighed.
on Apr 3rd, 2005, 3:48am, PCMCCK wrote: a disclaimer stating that they are not encouraging people to use hallucingenic or other illegal drugs, that they are just providing information and then go on to tell people how to grow them and take them-very morally courageous! Do any of you know the possible adverse effects that hallucinogenics can have upon someone with an underlying psychiatric illness? Perhaps that should be required reading. |
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The disclaimers have nothing to do with moral courage. They have to do with staying out of jail and being able to continue to offer the information without it being pulled off the internet by polititians that don't suffer from clusters.
And yes, we have read about possible adverse effects, thank you. Have you any additional studies that show these adverse effects you'd like to share with us? Shall we compare Imitrex deaths to mushroom deaths in headache prolaxis?
on Apr 3rd, 2005, 3:48am, PCMCCK wrote:please don't encourage them to take your drugs-that is something that should be decided between patient and doctor and my main concern is that someone will be harmed by discontinuing their treatment by their physician in favor of "unconventional" or "alternative". |
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Let's be honest here shall we?
We aren't suggesting cancer patients discontinue their life saving medications and use coffee enimas instead.
We are offering up our experiences so others may decide (or not) if they want to try something that might work better for them than conventional treatments.
Do I worry about someone being harmed in the future, yes. Do I worry about the people that are currently being harmed by "conventional" treatments that have been decided between doctor/patient? Yes. Do I feel bad when I see people here lose relationships, their homes, their jobs, their lives, while on "conventional" treatments? Yes.
Every medical breakthough should be (must be) looked at closely. If they were looked at more closely, we wouldn't have problems like the medical community has approved such as putting mercury in vaccines, Vioxx and Thalidomide for pregnant women.
Bobw
(I'll bet you have a mpeg of Reefer Madness on your hard drive, don't you?)
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Chillrmn1
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Mia,
Glad you and "D" are still doing well!!
Positive Light and Energy To You Both!!
Sincerely,
Bob
Edited to add: Pay no attention to the negativity by some.
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| « Last Edit: Apr 3rd, 2005, 8:02pm by Chillrmn1 » |
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jokrs2
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Re: no longer chronic
« Reply #286 on: Apr 4th, 2005, 1:02am » |
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"Pain Free" is what it's all about. I've taken the doctors meds and NOTHING worked until I took 2 HBWR seeds. Yes, Kudzu works better for me than the triptans which worked better than the opioids which worked better than antidepressants. The HBWR did what all of the others could not, "removed me from the shadow world for 15 hours with 32 hours pain free for the first time in over 13 years". And I will be dosing again on wednesday because I know how the human body works. It has a tendency to gravitate to what it get's used to. If the problem occurs in the mind it has to be changed THERE. If I can swish down a little bit of liquid without hallucinating once a week and get better relief than eating 10 pills a day....OK I just convinced myself again...wednesday it is! This is not bucking conventional wisdom, this is using it. Now back to my bowflex. 
Positive energy and light...Gotta love it! Keep it going Mia & D, Thanks Bob
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| « Last Edit: Apr 4th, 2005, 1:05am by jokrs2 » |
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mynm156
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Re: no longer chronic
« Reply #287 on: Apr 4th, 2005, 1:08am » |
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There Is A GOD!!!!
Good Deal
MYNM156
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BobG
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Re: no longer chronic
« Reply #288 on: Apr 4th, 2005, 4:03am » |
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Here's my 2 cents worth...........
Miapet started this thread 11 months ago to let us know about success with the schroom treatment. For 11 months this thread has been on the first page. That, IMHO, makes this one of the most important threads ever to appear here.
It has greatly deteriorated in the last few days. That is not good. Please, lets move on and keep this thread what it has been for 11 months. It is just to important to lose it all now.
Thanks Mia.
PCMCCK, your attitude needs a little adjusting.
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miapet
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Re: no longer chronic
« Reply #289 on: Apr 4th, 2005, 9:36am » |
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We just want to thank everyone for all of the support y'all have given us.
*positive light, energy, and much love* to everyone . . . may you all benefit and enjoy from pain free time . . no matter what your method of battling the beast is . . .
D & miapet
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nani
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Re: no longer chronic
« Reply #290 on: Apr 4th, 2005, 9:53am » |
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on Apr 4th, 2005, 4:03am, BobG wrote:Here's my 2 cents worth...........
Miapet started this thread 11 months ago to let us know about success with the schroom treatment. For 11 months this thread has been on the first page. That, IMHO, makes this one of the most important threads ever to appear here.
It has greatly deteriorated in the last few days. That is not good. Please, lets move on and keep this thread what it has been for 11 months. It is just to important to lose it all now.
Thanks Mia.
PCMCCK, your attitude needs a little adjusting.
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So true, Bob. Mia and D...so happy for you! Happy for anyone who finds something that works!
*POSITIVE LIGHT AND ENERGY* ....  nani
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Bob P
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Re: no longer chronic
« Reply #291 on: Apr 4th, 2005, 10:17am » |
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Quote:| "I've tried the "shrooms" and they didn't work." |
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Hey PCMCCK -
I've tried the "shrooms" and they didn't work.
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| « Last Edit: Apr 4th, 2005, 11:18am by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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vig
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Re: no longer chronic
« Reply #292 on: Apr 4th, 2005, 10:44am » |
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on Apr 4th, 2005, 10:17am, Bob P wrote:
Hey PM -
I've tried the "shrooms" and they didn't work. |
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From this same page of threads...
[quote author=Bob P]
« Reply #25 on: Mar 29th, 2005, 11:10am »
Not sure what to attribute it to but the Sunday night hit was a laugher and last night I didn't even get out of bed. It was more of a feeling of one starting but never any pain.
Either:
The shrooms are kicking in
The kudzu is kicking ass
I'm too old and ugly to have real clusters anymore.
I'm afraid I'm not going to be much good as a test subject this time around since I'm jumping treatments so quickly. Sorry about that, but no pain is good.
[/quote]
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| « Last Edit: Apr 4th, 2005, 10:48am by vig » |
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Bob P
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Re: no longer chronic
« Reply #293 on: Apr 4th, 2005, 11:17am » |
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And after last night's 40 minute Kip 8 I'd say the shrooms didn't work, the kudzu didn't work and I'm not old and ugly.
A question for PCMCCK - Are you a doctor? I thought I saw a thread where you said you don't prescribe Elavil anymore.
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| « Last Edit: Apr 4th, 2005, 11:19am by Bob P » |
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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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vig
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Re: no longer chronic
« Reply #294 on: Apr 4th, 2005, 11:30am » |
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The problem with switching meds so quickly is that you can't really make ANY kind of definitive conclusion....
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Sophie
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Re: no longer chronic
« Reply #295 on: Apr 4th, 2005, 12:43pm » |
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I second the motion to get this thread back on track.
Sophie 
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WHERE ARE WE GOING?
AND WHY AM I IN THIS HANDBASKET?
Cluster Buster
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PCMCCK
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Thank you, Bob P., for having the courage to write in and say that the mushrooms didn't work. I think that the thread is on track if we hear from those who do not claim success with this treatment. I really do believe that there may be many other CH sufferers out there who have tried mushrooms without success but are reluctant to write in because such messages are unwelcome. As for my "attacking" miapet, I did not start that-my remarks were mild compared to the private message that she sent to me. I am sure that she is a fine person but if this site is going to be of real help to others, we must welcome those who have opinions or experiences that differ from the majority of people who send posts here-it is, I must say, somewhat of a clique and that should not be. If getting this thread back on track means continuing with the "if you are not with us you are against us" mentality, then all meaningful purpose is gone and it will just remain a "feel good" fan club. I do recall reading one of the websites referenced here in which it said that the effectiveness of the mushroom treatment cannot be adequately measured because those for whom it did not work tended to drop out and not give feedback; I do hope that Harvard conducts it's study and do hope that it can scientifically prove the effectiveness of this treatment, but until then all we have is anecdotal evidence and a skewed sample. Once again, I thank Bob P. for writing in and hope that others do as well so that this thread will present a more balanced picture. I have achieved my purpose-and without using obscene language (and if you are going to use such language, please be more creative-there is a wonderful world of colorful curses out there that are so much more interesting than the usual fuck and shit, etc.). Best regards to all, best wishes for pain free days and nights and thank you for an interesting ride! Auf wiedersehen! 
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| « Last Edit: Apr 4th, 2005, 2:28pm by PCMCCK » |
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Margi
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Re: no longer chronic
« Reply #297 on: Apr 4th, 2005, 2:03pm » |
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my husband is another one the shrooms eventually failed, however the popular school of thought on that from the busters is that he did it wrong (even though nothing was done different that in his previous attempts during remission, but I'm sure there will be a post following mine to discount this.) Anyway, I won't go into all of it again - I'm sick to death of it.
However, this thread that Mia started had the intent to celebrate her husband's success and we are ALL happy for them that the remission continues because of the shroom therapy, and for everyone else who is experiencing the same success. The busters have put in an amazing amount of time and research to this and, for that, they should be commended. They do have a high success rate and, in my opinion, any ONE clusterhead that finds THEIR magic relief should be celebrated. PCM, I think perhaps you might get a better response to your questions if you started a new thread, rather than to try to change the celebratory feeling of this one. No sense raining on Mia and D's parade. They've both worked hard to maintain their success and, if Mia wants to wish you positive light and energy, let her do that. Live and let live, ok?
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miapet
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Re: no longer chronic
« Reply #298 on: Apr 4th, 2005, 2:38pm » |
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Thanks Margi *SMILES*
Again, thanks to y'all for keeping us going. I remember all the help and support from ALL the clusterheads when i was frantically looking for answers . . . and, as MOST OF US feel/believe . . .may you all be p/f for EVER . .no matter what you choose to battle the beast with.
*POSITIVE LIGHT AND ENERGY*
miapet
edited to remove myself from the bitterness and negativity.
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| « Last Edit: Apr 4th, 2005, 6:37pm by miapet » |
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BobG
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Re: no longer chronic
« Reply #299 on: Apr 4th, 2005, 4:00pm » |
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Amen Margi.
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