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Topic: strength from knowledge & support (Read 920 times) |
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rain
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strength from knowledge & support
« on: Oct 26th, 2002, 3:20pm » |
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My husband (ted pounder) and I are so glad to have found this site !
We have gone 3 years not knowing what this horrible pain was. He has finally been diagnosed with CH. It was a relief to finally put a name on the beast. but, at the same time the things we read were so frightning.
comming to CH.com was the best thing in all this. We now can find strength in the knowledge and support we get here.
Thank-you to all of you who are here to listen .
Last night when the beast came knocking I was so tired I just kept falling to sleep off and on..*feeling guilty*
I work nights and it is so hard, I go to bed just a couple of hours before it hits. I don't want him to be alone in his pain. even if i'm just there with him. I'm just feeling guilty today...*sigh*
glad your all out there listening. It feels good to write this pout.
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Margi
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Re: strength from knowledge & support
« Reply #1 on: Oct 26th, 2002, 3:24pm » |
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Yep, sleep guilt. Know it well.
Even thought they don't usually want us to be with them when they're getting hit - we often feel we should at LEAST be within earshot.
My husband has a six month cycle this year. I had a few of those sleep guilt nights myself. I just couldn't wake up and Mike's real quiet, doesn't want to disturb me. But sleep deprivation takes over at some point.
I don't have any answers for you, Rain - other than to offer that you're not alone with this. Is Ted taking anything to try to help him sleep? Generic Dramamine will sometimes get him through the night without getting attacked. It prevents REM sleep - and too much of THAT isn't good either - but maybe even just a couple of nights of undisturbed sleep would do you both some good.
Hang in there, Rain and welcome to Clusteropolis.
Hugs,
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rain
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Re: strength from knowledge & support
« Reply #2 on: Oct 26th, 2002, 3:37pm » |
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Thank you Margi !
It's been about 6 weeks only 2 nights without the night-time "visits". I do get tired and exhausted.(emotionally and physically) Ted tries to let me sleep (he is so sweet even in pain) I just want to be there if he needs anything.
He is getting great support here (you even helped him on his post)*S*
I just have a lot going on right now and sometimes it all weighs a ton
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The mad viking
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Re: strength from knowledge & support
« Reply #3 on: Oct 26th, 2002, 6:03pm » |
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i have to say something here as a sufferer.
I think you supporters doing a little "mistake" here.My wife does that to,so i guess its rather common way to react
The mistake is to let us take over a huge part of your lives.
Thats the mistake as i see this
After some years with this we found out that something has to be done,before all of us was "down in the basement"
So we agreed to try another thing,and that is as follows:
Just let me know that i got somebody around those horrible nights when i get hit
Its no use to hold my hands or comfort me.
If you do that you will not be able to get sleep yourself
there is absolutely nothing you can do but see me banging my head at the wall
guess that most of you supporters have your own work to take care of to
This is working for us here
btw i have all the respect in the world for you supporters
You are alfa and omega for us
but do not forget that you have your own lives to live to.
Hope that you understand what i`m trying to say here 
A HUGE HUG to you all
Svenn
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Always Look on The Bright Side of Life
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Margi
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Re: strength from knowledge & support
« Reply #4 on: Oct 26th, 2002, 6:32pm » |
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Thanks, Svenn - that was really nice what you said.
It's real good in theory, but tough to put into practice. I don't know a true cluster supporter amongst us who could see our sufferers go into attack and be able to happily drift off to sleep.
It's really a vicious circle - we feel guilty because we can't help you, you feel guilty because you're putting us thru that. Cluster guilt is contagious.
I do agree with you that it is important for supporters to MAKE time for themselves, though. Even if it's just going for a walk alone or a workout when our sufferers are between attacks. Just an hour off from the 'cluster watch' often helps pull things back into perspective for us.
Thanks again, Svenn - and you sufferers wonder why we love you guys?
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rain
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Re: strength from knowledge & support
« Reply #5 on: Oct 27th, 2002, 3:51am » |
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I just got home from work and it's late. I know if I go to bed it will be soon that the evil that shares our room will come for his night time visit. He tried something new tonight he took an imitrex pill a little while ago. lets see if it helps*sigh*
Thank all of you for your support while I whined about feeling guilty. I feel better know. Usually I am very strong. But, sometimes I get a little worn.
I realize when Rich is banging his head against the floor that I can really do nothing for him, but I feel better just being there to make him not so alone in his pain.
I again say I am soooo glad we found this place. We are both new to this pain (he was just diagnosed).
Good nite ...& thanx
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| « Last Edit: Oct 27th, 2002, 3:54am by rain » |
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Ree
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Re: strength from knowledge & support
« Reply #6 on: Oct 27th, 2002, 11:03am » |
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yup thats just what bein a supporter is... I couldnt sleep knowing he is up and hurting that bad... actually he used to get up with me when I was nursing Gabrielle (Breezy) as a baby...Its just part of being a team... being One that your marriage entitles you to... (even if its only ONE sided no pun intended) Love to you all and all that you support... Ree
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BonnieW
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Re: strength from knowledge & support
« Reply #7 on: Oct 28th, 2002, 6:36pm » |
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Rain,
We have a nighttime (or early morning) routine in our house when Warren is in cycle. He works shift work and his worst time is about 90 minutes after he comes to bed in the early morning. I will hear him start moaning and realize it is starting before he even wakes up enough to know it. So, I jump out of bed and turn on the oxygen, hand him the mask and make sure he is awake enough to use it properly. He just holds the mask to his face. Then I climb back into bed and just lay with my eyes closed while (hopefully) the oxygen does the trick. After about 15 minutes if the CH is gone, one of us turns off the oxygen and then we can both go back to sleep. If (sometimes unfortunately) it doesn't work, we have to resort to something else. I sometimes used to feel guilty about not staying up with him, but it works for us.
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Ree
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Re: strength from knowledge & support
« Reply #8 on: Oct 28th, 2002, 9:06pm » |
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Rain you are a sweetie pie... Every Clusterhead is wondering if you have a sister/brother right now...LOL sounds like you have the routine down pretty well... have a Pain Free Week............. love ree
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rain
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Re: strength from knowledge & support
« Reply #9 on: Oct 29th, 2002, 3:15pm » |
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THANK-YOU everyone! We had our first night with O2 WOW ! now. I know this might not work every time BUT it sure did last night ! Rich woke with a 10 and tried the O2 in just a short time we were ummm errr well lets just say he felt a LOT better *blushing*
His Dr. read some info we printed out on this site and gave Rich his O2 from his office until we can get the perscription(sp) filled (what a guy)
Thank-you thank you !!
you have all been an amazing strength for us. I don't have any family outside my children and Rich and I was given up when I was 11 (long story) so I don't really know my birth family well also they are in PA. I'm in WA. I do e-mail a cousin in the navy. anyway this site is a place I can cry and you understand the pain.
God bless...BIG SMILE
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| « Last Edit: Oct 29th, 2002, 4:15pm by rain » |
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Ree
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Re: strength from knowledge & support
« Reply #10 on: Oct 31st, 2002, 1:10am » |
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hey Rain... what a great doc... we have a good one too. Glad the 02 worked for you Alot of the sufferers here have had good luck with it...
We will be your family you will never have to be alone in this again.... love your little sis (only in size im sure)Ree
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cootie
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Re: strength from knowledge & support
« Reply #11 on: Nov 3rd, 2002, 10:25pm » |
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Hi...hope things are going ok now and 'something' is working for you....my hubby "seems" to be over his cycle but not outa of the woods yet....it's a well deserved and appreciated break I must say....he began takeing the imitrex before he went to bed and in the morning about a half hour before attacks came on....(he was getting the eveinin ones around 9:30 pm and later in the cycle they would hit later tho 'after' he went to bed and fell asleep so he began to take one and go to bed within the hour when he felt an attack was possible cuz of how he felt....he'd still get up around midnight and sit on the couch a while afraid to go back to bed or lay down cuz he 'felt an attack was maybe comeing on ....he gets very nasal'y on one side 'all of a sudden' with his first sings of an attack and his eye would tear up bad and run down his face.....when that happen'd he got hit harder faster ! I've spent alot of time sitting stareing at the tv or out the window and go sort of 'blank' or numb inside dureing his attacks and loose sense of time.....kinda like your tuneing it out to save your own sanity cuz you feel so guilty and helpless and bad.....and guiltier yet for hateing when the attacks came on.....good luck.....and thanks again to you ALL....cootie
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| « Last Edit: Nov 3rd, 2002, 10:31pm by cootie » |
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Margi
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Re: strength from knowledge & support
« Reply #12 on: Nov 3rd, 2002, 10:39pm » |
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Cootie? Word of advice? DON'T lose track of time. Watch the clock. You must know, on average, how long his attacks last. Yes, the minutes tick by like centuries when there's attack happening, but ... they do eventually ALL tick by. Use it as your light at the end of the tunnel, and let him know when he's only got about 15 more minutes to go. It might really help him to know, too.
But I know what you mean by that vacuous feeling. Hang in there, supporters.
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cootie
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Re: strength from knowledge & support
« Reply #13 on: Nov 3rd, 2002, 11:04pm » |
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Hi.....Actually this may sound REALLY strange but I'd know the amount of time cuz of shows on tv starting and ending..I was watching them but 'not' absorbing anything dureing his attacks (he'd be upstairs battleing it out)...I was seeing and the song or whatever at the end or beginning of each show would give me a sense of the time that had passed...isn't that odd to say tho. Guess we learn to adapt in all sorts of ways....but yea yer rite about trying to keep track of the time his attacks run....they would normally come at almost the exact same time to the minute at first twice a day....the last ones were short so were at the end of them we hope for the cycle....for now....I always fear holiday stress as a trigger...been there and seen that one over the Xams holidays before and that was a horrible ordeal. Thanks for the info.....after about a month now were gettin somewhat back to normal or feeling a bit more relaxed about it !!! THanks again...cootie >^..^<
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| « Last Edit: Nov 3rd, 2002, 11:09pm by cootie » |
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rain
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Re: strength from knowledge & support
« Reply #14 on: Nov 4th, 2002, 3:21am » |
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Hi I sure hope everyone is doing well. Rich and I had a peaceful night last night and I sure hope he has one tonight (so far so good) We tried something else the last 2 days. Rich has had a broken back for 3 years and takes 1 vicodin a day but I read that narcotics can actually make the headaches worse. So he didnt take one yesterday and well no headache last night. He is also allergic to tylenol and I guess it's in vicodin. now I also read that when someone is having CH at the time of the attack there histamine level is very high ...well if he is having an allergic reaction to the vicodin maybe going off them will help lessen the cH I can only hope.
I want to again thank all of you for your warmth and support. I pray you all have a peaceful night ...and cootie let the holidays come but relax don't let them pressure you ...after all we are supposto (sp) enjoy them...I love you guys...Colleen
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cootie
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Re: strength from knowledge & support
« Reply #15 on: Nov 4th, 2002, 9:24am » |
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Hi...hope everyone has a pleasant week....hubby, Brad has found out he has had to change a few things in his routine and be careful of certain meds or foods that was "possibly" triggering nite time attacks ?? A few beers before bed with tv to relax seem'd to be triggering them for a while....he thought it'd help....trial and error.....so far were doin good with breaking that nasty cycle....he even took today off to work in the garage today.....(time well spent for things he wants to do and slower pace for the day at least)....have a great day everyone and thanks for being there !!! Cootie >^..^<
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Margi
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Re: strength from knowledge & support
« Reply #16 on: Nov 4th, 2002, 9:40am » |
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A few beers before bed????  Is he nuts?
Alcohol is famous for provoking attacks, Cootie. It's in all the literature and, for most clusterheads, it needs to be avoided at all costs during cycle. It seems to be more of a trigger for episodics than it is for chronics.
Also watch out for MSG - especially in Chinese Food.
Cootie - read everything you can in the buttons to the left and over at the OUCH Website. Read the menus above the map. You are your husband's first line of defense here, gal...educate yourself about clusters.
I don't mean to sound aggressive here...it's just that avoiding alcohol is the FIRST thing in cluster survival. Also, my husband has found that relaxation is a big trigger for him, as well. Not that we can live our lives being constantly busy, but that's when most attacks hit him...when he slows down or tries to sleep.
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| « Last Edit: Nov 4th, 2002, 9:42am by Margi » |
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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cootie
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Re: strength from knowledge & support
« Reply #17 on: Nov 4th, 2002, 11:03am » |
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Hi......Yeah we discussed alcohol and his clusters.....(he's not a big drinker....but I read it was BAD period dureing the cycles and could trigger them)...it's like he got caught up in tooooo much at one time this episode then did everything wrong dureing it...it really caught him off guard this time and he kept saying it was just sinus (he hoped !!!) cuz everyone had this nasty sinus stuff with bad headahces . It seem'd to take longer to adjust things and realize he HAD to change some habits for the time being this time around.....cuz it was obvious his CH's were "baaacckkk"....it's almost like he was trying to avoid the issue.....I mean.....wouldn't that be nice to be able to block it out and it go away....not gonna happen tho !! I really think he panic'd this time and just wouldn't follow the rules at first....but I told him about one week before his attacks he was going to get them back if he didn't 'chill out'....he was burning a candle at 2 ends....I could see the difference in how he was handleing things and tryin to do to many things at once. (eating dinner alot later..goin to bed later....gettin up grouchy....not eatin his lunch all day at work cuz of being to busy not takeing the time...ect ect...drastic changes and then that vacation where so many things went WRONG) I tried to tell him things he was doing wrong for the cycle stage when they frist hit hard...he's not real pleasant when he has attacks. I've gotten more info on this site the past month then I was able to learn the past 15 years !! He realizes he was trying to just avoid the entire ordeal this time and he learned the hard way he has to make adjustments dureing these cycles !! Do aother people get caught up in this and make things worse for themselves ? He HAS to change things dureing these spells.....all I can do it tell him what I have read and learned. Were just glad it seem's to be about over.....thanks........I'm trying to be a better supporter.......cootie >^..^<
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| « Last Edit: Nov 4th, 2002, 11:15am by cootie » |
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Margi
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Re: strength from knowledge & support
« Reply #18 on: Nov 4th, 2002, 11:50am » |
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Cootie, you're doing just fine as a supporter. The fact, even, that you're HERE shows that you care enough to try to help.
We, as supporters, can only do so much to help and you're absolutely right - he really does have to change some habits when he's in cycle. The mood swings are commonly mentioned here...that hypothalmus rules so many things and all of its domain gets out of whack when it tells the body to go into cycle, I think.
Hopefully this cycle will be gone soon. Hang in there.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
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rain
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Re: strength from knowledge & support
« Reply #19 on: Nov 4th, 2002, 2:21pm » |
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Cootie,
Margi is so right on ...you are here doing the best you can ...learning. I am new at the CH thing and I have learned so much on this site. I even printed out some stuff and the Dr. was like "Ohhh yeah-that makes sense" My Rich has had a hard time with some of the things he had to change too. It's hard to be told you "can't" do this or that.
Keep up the strength ...by your example he will find the strength he needs as well...
Peace, Rain
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cootie
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Re: strength from knowledge & support
« Reply #20 on: Nov 4th, 2002, 4:19pm » |
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Hi all.......He's doin pretty good rite now and hope it lasts without the CH's for the past several days....he even went on his hunting trip with some close friends..I was worried what that would be like so soon after his last attack......I'm sure them guys have never seen nothin like what happens and with it being several guys in a big camper it'd be hard to get away from everyone and to cold outside to go sit in his truck to fight them off which is probly what he'd of done tho. So all went well..gosh we had Chinese food when his attacks first started....oh my I didn't realize that was bad....some help I was !! I've learned alot but have so much more to learn yet ! I have got to read up on the MSG stuff...didn't they used to treat salads at resturants with it and had to stop ? It used to give me the jitters really bad if I ate at some of them places esp salads and I'd feel terrible a while and weak and found out that's what caused it. But guess I was thinking it was banned...maybe not in everything after all.....duh....I need to read up on that info !!!! I think ALOT of the foods we eat (prepared stuff) is pratically killing us and the cause of alot of things that go wrong in all sorts of ways.....that is scarey !!!! Thanks to all again...cootie >^..^<
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| « Last Edit: Nov 4th, 2002, 4:24pm by cootie » |
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rain
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Re: strength from knowledge & support
« Reply #21 on: Nov 5th, 2002, 3:32am » |
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Cootie,
It's funny what you said about food in resturants. I work in a resturant and just today I learned that the ranch dressing and just about all the deep fried foods contain MSG. I was shocked and sickened by this info. I have a lot of migraines and now I know why!! How can we protect ourselfs? I am going to bring this to my bosses attention. My guess is they wont care.
I'm so glad your hunny had a good camping trip. You are so good the way you take care of him.I think all these supporters are wonderful people. Anyone who can do what we do has to be strong.
Rich had a bad CH at work. It must have been so awful for him, lucky he was in his office. (he is a safety officer)  and he got to come home.
His came back today he had 2 nights free *sigh* well we have o2 and a shot of imitrex...ready with our weapons of choice!
Ohhh one more thing... about alcohol. Rich is sensitive to it even just a beer. He has a few allergies ...do any of your CH sufferers ? I know allergies raise histamine.
Good night everyone.
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Margi
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Re: strength from knowledge & support
« Reply #22 on: Nov 5th, 2002, 9:04am » |
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Rain, I'm confused...
In your first post you say you are Ted Pounder's wife....then, later on you're calling him 'Rich'. Do you have TWO clusterheads?
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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cootie
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Re: strength from knowledge & support
« Reply #23 on: Nov 5th, 2002, 9:34am » |
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Hi all agin today.....Yeah Brad has some allergies but mostly stuff that comes with the season's it seems tho.....both of us are miserable after rakeing leaves !!! We really thought his recent attacks were sinus at first cux everyone around here has had bad bad sinus....and really bad headaches go with it for a few weeks. (I had it)...maybe it was some sorta bug goin around to...dunno....he got a flu shot. I'd heard that leaves carry mold type sporen (don't quote me exactly on this one) but they can cause really nasty sinus infections and know someone that got some sort of lung infection cuz of swelling in her lungs (area around the lungs) ect...we have TONS of leaves out here. I get alot of what I just call 'stress' headaches...but I get them when we go out which we try to do on weekends with a group of freinds if we can.....I'm not sure if I should blame it on the food or smoke or stress now....cuz I love the chicken wings ect that probly have alot of that MSG stuff !??? Beer normally doesn't bother him but he has learned it made CH's worse and he was thinking it would help him sleep better and relax ant not get one at first onsought...but realized different. He smokes to....don't suppose that helps. I know so many people these days that sruffer bad migraines "even kids" it makes me wonder what's going on !!!!!??? Don't know any other CH suffer'rs tho in our group. I think we all just have way to much on our minds to worry about and to much going on at once we can't do anything about and it overwhelms us all and adds to the stress factor. I dunno.....thanks all agin....so far hubby is pain free but he got restless late last nite and got up and I thought he was haveing an attack but he said things were cool........sheeewwww !!! Cootie >^..^<
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| « Last Edit: Nov 5th, 2002, 9:38am by cootie » |
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rain
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Re: strength from knowledge & support
« Reply #24 on: Nov 5th, 2002, 2:45pm » |
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OOOps...sorry Margi,
Rich is Ted pounder..Rich is his REAL name
 Tedpounder is his "cyber name"
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