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Topic: Help - any hope left (Read 1502 times) |
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rcw134
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Help - any hope left
« on: Feb 22nd, 2005, 10:57pm » |
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I've just gotton over a bastard of a headache - a migrain and I thought my head was gonna explode. I've been have two to three clusters a day, and I also get migraines. I was told 25% of those with these headaches have both.
I've had these daily since July 2004. I've been on amitriptyline, verapamil for years. I've tried imatrix, ergotamine, stadal spray, topomax, and at least ten others over the past years. I became cronic in 2001, and now it's daily cronic.
I retired from the police force in 2003 and am getting retirement - I've held down a job as a manager at a Sears parats and service store - the daily headaches started while at Sears. I thought the stress of my Detective job was the main cause of the headaches.
After retirement and working at Sears until Aug I ofund out it's not only or plain is not stress that causes the CH.
My retirement insurance was throught the county which is self insurred, it was paid until age 55, since I turned 55 this year, my insurance premiums are $1245 a month. Not being able to work, getting 2 grand a month and owning a home - I cannot see how I am going to provide for my wife and myself. We have a beautiful home, and I need to know what help is out there.
I took three percodan to stop this one tonight, but God it was a bad one - I felt like taking the whole bottle - not to kill myself - just to stop the pain. O2 an ice pack for the back of my neck and top of my head and waiting for the pain meds to kick in - God is there any hope?
My wife asked me tonight what we're gonna do, and I really don;t know. Tomorrow inbetween CH I intend to check on other insurances out there and any sservices that can help until I can get my appeal for S.S. disability thru. Can any one offer any advise? Right now I'm fearing the next one tonight - ice, midrin, maxalt, percodan, x-strength vicodan (how do people get hooked on that? - I sure as hell don't see it.
What ever, any one with help please respond - day after day after day after day. The best neuroligist (sp!) I ever had since 1976, died in an auto accident. Since then I've been dealing with my family Dr. He'd refill my scripts, and when something new came along, we'd try it. At thie point the Dr told me because of the complex headaches I have, I needed to see a specialist or headache center (did Diamond in 1997, hystimane for 10 or 11 days).
I'm going to check into the UW (Wisconsin) in Madison and see if they have anything to offer or that they want to try on me. God some days are hard.
I look forward to and pray there is some kind of hope out there.
Ray
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Ellick
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Re: Help - any hope left
« Reply #1 on: Feb 23rd, 2005, 4:51am » |
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Hi Ray,
Sorry that you are in such a tough place right now. I cant offer any advice about finance because I live in the UK and dont know how it all works in the USA.
Have you looked at the current high level of interest in Kudzu and have you tried O2.
Never stop looking for an answer, one day it will be there for all of us.
Go for the pain first and money finance stuff next. I have found I cannot resolve stuff while my the CHs are in full flow.
Hope you get to pain free soon and full life benefits follow.
My best wishes to you
Ellick.
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karma
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Re: Help - any hope left
« Reply #2 on: Feb 23rd, 2005, 6:12am » |
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Hi Ray,
There is hope!
I'ts not clear how much of the verap your on but the tendency is for the docs to not prescribe it in high enough doses. 480 mg/day up to 960 mg/day is not uncommon providing your heart can deal with it.
A combination of a prednisone taper to temporarily stop the hits with verap as a prevent is pretty common. The pred has some big drawbacks if not prscribed properly but in short courses can be affective. An example would be starting at 60 mg and taper down to zero over one or two weeks.
Take a look at www.clusterbusters.com. this method has been hugely affective for chronics and episodics but being in law enforcement you should know the risks.
On the meds and treatments board there is agood discussion ongoing about Kudzu.
Careful with the pain meds. they may be causing the frequency to increase and have little affect on the pain.
We all know the pain can be unbearble but weening of the triptans may not be a bad thing.
There are lots of folks here that do not or cannot use them.
For me I have found that allowing the pain to get me all worked up makes it worse. I have found that a concentrated effort on deep breathing from the dyaphram, in through the nose and out through the mouth, helps me get through it. The stomache should be going in and out and not your chest. When I do this I am able to sit in one place with my eyes closed until the pain is gone.
I know whats gonna happen and I know the pain is gonna go away. I have accpeted this and am able to ride it out. Its hard to accomplish but with practice it helps.
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Redd
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Re: Help - any hope left
« Reply #3 on: Feb 23rd, 2005, 7:51am » |
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Hello Neighbor!!!!! I'm just a short 15-20 minutes south of you. Please check your private messages, there is a place in the upper right corner of the page to do that.
Oh and BTW who were you seeing before as a neuro and I'm so sorry you needed to find us but we are glad you did. As I said check your messages I know a pretty good HA specialist here in Stevens Point.
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| « Last Edit: Feb 23rd, 2005, 7:58am by Redd » |
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Sean_C
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Percodan and Vicodin will cause rebound headaches.
Sean......................
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Bob_Johnson
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Re: Help - any hope left
« Reply #5 on: Feb 23rd, 2005, 8:21am » |
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This is a somewhat dated collection of ideas for dealing with insurance issues. (Use the "archives" button too find the old messages.)
----------------
HMO/MANAGED/INSURANCE PROBLEMS
See message at 1/18/00, "Dealing with managed care" and,
"If HMO/insurance won't cover treatment", at 12/06/99.
WWW.HEALTHINSURANCEINFO.NET Provided by Georgetown University. "Consumer Guide for Getting and Keeping Health Insurance." State by state guide to protections around health insurance.
POTENTIAL SOURCES OF INFORMATION AND ASSISTANCE IF YOU HAVE LOST COVERAGE BECAUSE OF LOSS OF EMPLOYER COVERAGE.
Because obtaining coverage for preexisting conditions (CH) is usually difficult, impossible, and/or expensive, searching a variety of sources is often required. This is not a comprehensive list of sources but a few suggestioins copied from the Prostate Problems Mailing List (10/31/01).
1. Group coverage may be obtained through professional associations, school alumni associations, or fraternal organizations.
2. National Association for Socially Responsible Organizations, a nonprofit cooperative based in Wasington, D.C.. The group doesn't sell health insurance but it provides referrals to other groups which might be able to help find coverage. Phone, 800/638-8113; info@nasro-co-op.com
3. Working Today, an advocacy and service group representing all types of independent workers. 212/366-6066; working1@tiac.net www.workingtoday.org.
4. Women, Inc. a Los Angeles based membership group for female entrepreneurs. 800/930-3993; womeninc@aol.com www.womeninc.com.
5. The Health Insurance Portability and Accountability Act of 1966 (HIPAA) requires insurance companies to "convert" group health plans to an individual plan which covers the preexisting conditions which was covered when the person was in a group plan. The person must have used the COBRA benefit before using HIPAA. (You may have to call your state insurance office to get information/contacts.)
6. States often have risk pool programs which allow limited coverage for preexisting problems. You might start by looking at the Georgetown University web site mentioned above and/or calling your state insurance office.
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Bob Johnson
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Lobster
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Re: Help - any hope left
« Reply #6 on: Feb 23rd, 2005, 9:16am » |
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Shrooms.
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Rock beats Scissors.
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Lobster
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Re: Help - any hope left
« Reply #7 on: Feb 23rd, 2005, 2:36pm » |
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And mayhaps Kudzu.
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Rock beats Scissors.
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Bob P
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Re: Help - any hope left
« Reply #8 on: Feb 23rd, 2005, 6:31pm » |
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From the OUCH Medications page:
http://www.phrma.org/
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Kris_in_SJ
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Re: Help - any hope left
« Reply #9 on: Feb 23rd, 2005, 7:51pm » |
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Hi,
Welcome, but so sorry you have to be here.
You're obviously dealing with a great number of issues. High on the list is dealing with a debilitating condition that requires insurance, but having to pay ungodly amounts to maintain it. My husband and I are both self-employed. Our monthly insurance payment is more than our mortgage, so I can relate.
It sounds like you've tried many meds, but does that include Oxygen? It's a manna from heaven to many cluster sufferers. Otherwise, I'm with Rock Lobster on this one. While it might go totally against your beliefs as a former detective, shrooms are the answer to many chronic sufferers. Try a visit to clusterbusters.com.
I have no idea how shrooms work on migraines, but they've been very successful for chronic clusters.
Hang in there and many hugs coming your way,
Kris
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TxBasslady
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Re: Help - any hope left
« Reply #10 on: Feb 24th, 2005, 2:54am » |
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on Feb 23rd, 2005, 8:18am, Sean_C wrote:| Percodan and Vicodin will cause rebound headaches. |
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Amen !!
Sean is right, Ray. Some of the meds you are taking like the Percodan and Vicodin will give you rebound headaches. Narcotic drugs do very little for CH. If you read the posts here, you will see this written and stated over and over again.
They may stop the pain temporarily, but the CH will come back bigger than ever. You need to try and ditch those drugs, not because of the addiction factor so much as the rebound headaches you are bringing on.
If you get nighttime hits, you might try Melatonin. You can buy it at Wally World for about 2 or 3 bucks a bottle. Buy the 3 mg. tablets, and try taking 2 or 3 before bed. Give it a few days....and you may find it will help. And also...like someone said...check out the thread on Kudzu.
There are alot of home remedies that will help. The CH will break thru sometimes, but any PF time you get is worth it.
Welcome to the board.....I am also retired from the Sheriff's Dept. here in Texas. My husband is retired Fed Gov't, so fortunately, we have continuing insurance.
There are also some areas that offer some studies on CH. Check out some of the posts on those studies. The meds are provided and it helps you and the Medical Facility conducting the studies.
Good luck.....and lots of PF vibes.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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tc12346
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Re: Help - any hope left
« Reply #11 on: Feb 24th, 2005, 10:52am » |
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read about candida. It worked for me.
www.candidadiet.com
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| « Last Edit: Feb 24th, 2005, 10:52am by tc12346 » |
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LeLimey
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Re: Help - any hope left
« Reply #12 on: Feb 24th, 2005, 11:26am » |
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okay thats two strikes
DD REDD TROLL ALERT!!!
You say you aren't selling anything but you have made two posts both plugging this site... fishy?? and thats just the candida huh?
You've told us nothing about your symptoms and /or how long you've had CH.. what other meds you tried or anything
Oh and guess what? You registered here 20 minuts before the post on this page!
Can't you even be bothered to research what CH is before you plug your website?
We've seen it all before, no doubt we;ll see it all again
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Redd
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Re: Help - any hope left
« Reply #13 on: Feb 24th, 2005, 11:52am » |
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Yeah Helen this dude with the yeast thing has been here before...a hit and run troll, never stays around long enough to polk sticks at...lol
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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LeLimey
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Re: Help - any hope left
« Reply #14 on: Feb 24th, 2005, 12:00pm » |
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Never mind Redd.. at least I know you are here! Thats what counts!
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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vig
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Re: Help - any hope left
« Reply #15 on: Feb 24th, 2005, 12:01pm » |
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Tony Orlando...
The stars won't come out if they know that you're about
Cause they couldn't match the glow of your eyes
And, oh, who am I ? Just an ordinary guy
Tryin hard to win me first prize
Oh my Candida
We could make it together
The further from here girl the better
Where the air is fresh and clean
Oh my Candida
Just take my hand and I'll lead ya
I promise that life will be sweeter
'Cause it said so in my dreams
The future looks bright, the gypsy told me so last night
Said she saw our children playing in the sunshine
And there were you and I in a house, baby, no lie
And all these things were yours, and they were mine
Oh my Candida
We could make it together
The further from here girl the better
Where the air is fresh and clean
Oh my Candida
Just take my hand and I'll lead ya
I promise that life will be sweeter
'Cause it said so in my dreams
Oh my Candida
We could make it together
The further from here girl the better
Where the air is fresh and clean
Oh my Candida
Just take my hand and I'll lead ya
I promise that life will be sweeter
yup, Candida, indeedy
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never, Never, NEVER quit. -Winston Churchill
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Redd
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Re: Help - any hope left
« Reply #16 on: Feb 24th, 2005, 12:23pm » |
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Are you saying she gave him an infection Vig?
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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sandie99
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Re: Help - any hope left
« Reply #17 on: Feb 24th, 2005, 12:41pm » |
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maxalt works with my head... 
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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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tc12346
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Re: Help - any hope left
« Reply #18 on: Feb 24th, 2005, 12:56pm » |
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I am not selling anything really. My symptoms were headaches/migraines, chest tightness, achey muscles, fogginess, really tired even when I just got up like I did aerobics. I am only here to tell you guys that since I've been on the anti-candida diet, all of these symptoms are gone. I am not promoting any site, just the one I showed above was a good one. Do your own search and you'll find many sites on this subject. Sorry if you think I'm full of it but I'm only here to help cause I'm better. Are you?
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| « Last Edit: Feb 24th, 2005, 12:56pm by tc12346 » |
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TomM
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Re: Help - any hope left
« Reply #19 on: Feb 24th, 2005, 12:57pm » |
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on Feb 24th, 2005, 10:52am, tc12346 wrote:And I've got a loverly ocean front home to GIVE you located in SriLanka.
Hit the happy trail, troll.
on Feb 24th, 2005, 12:56pm, tc12346 wrote:| I am not selling anything really. My symptoms were headaches/migraines, chest tightness, achey muscles, fogginess, really tired even when I just got up like I did aerobics. I am only here to tell you guys that since I've been on the anti-candida diet, all of these symptoms are gone. I am not promoting any site, just the one I showed above was a good one. Do your own search and you'll find many sites on this subject. Sorry if you think I'm full of it but I'm only here to help cause I'm better. Are you? |
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You are begining to piss me off. Why don't you go play on the freeway; you are not welcome here!
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| « Last Edit: Feb 24th, 2005, 1:01pm by TomM » |
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tc12346
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Re: Help - any hope left
« Reply #20 on: Feb 24th, 2005, 12:59pm » |
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you're sad - I'm only trying to tell you that this worked for me.
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TomM
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Re: Help - any hope left
« Reply #21 on: Feb 24th, 2005, 1:08pm » |
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on Feb 24th, 2005, 12:59pm, tc12346 wrote:| you're sad - I'm only trying to tell you that this worked for me. |
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Fine. It worked for you.
Your symptoms are not like CH. Quote:| My symptoms were headaches/migraines, chest tightness, achey muscles, fogginess, really tired even when I just got up like I did aerobics. |
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I'm a tad bit ornery b/c I've been hit 3 times in the last 12 hours. If I am wrong, then I apologize.
BTW--I tried to e-mail you so I could do this privately but yours is hidden; mine is not. Please contact me.
TomM
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| « Last Edit: Feb 24th, 2005, 1:10pm by TomM » |
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"Everyone should believe in something. I believe I'll go fishing."
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Redd
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Re: Help - any hope left
« Reply #22 on: Feb 24th, 2005, 1:12pm » |
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you know what? we don't care what worked for your chronic fatigue syndrom azzhole. This is a CH site, and you are obviously not a Clusterhead...
Be gone before the the boot is up your azz...you obviously have not read the welcome sign. "Exclusivly for CH sufferers and supporters"
You ahve been here many times to the same end? Are you taht daft that you can't understand you have nothing we can use and we don't want you here. Pick up your toys and go home!
to add: I really hate it when idiots like this prey on the newcomers who are desperate to find relief from CH. Gawd it just gets up my craw!
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| « Last Edit: Feb 24th, 2005, 1:16pm by Redd » |
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Redd
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Re: Help - any hope left
« Reply #23 on: Feb 24th, 2005, 1:19pm » |
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Quote:| Sorry if you think I'm full of it but I'm only here to help cause I'm better. Are you? |
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You don't have CH...we do. You don't seem to get the message....Go away and never come back!
Favorite line from LOTR... 
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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tc12346
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Re: Help - any hope left
« Reply #24 on: Feb 24th, 2005, 1:29pm » |
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I can't believe the great support here. My original reply was to rcw134 and the topic is "any hope left". And yes I did have CH and no I don't want to share my email. All I want to do is share very good info. Sorry if I'm not here 24/7, I do have a job and other things to do. If you don't have any answers for people, then you shouldn't be telling me to go away.
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