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Topic: Who is who here to the newcommers (Read 24364 times) |
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superdave10
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Re: Who is who here to the newcommers
« Reply #50 on: Sep 10th, 2005, 1:22pm » |
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The name here is David. I'm joining this list after starting my third encounter (cycle). I suppose my first encounter with the "beast" about 2 years ago. I began having ch at night and thinking it was just an awful sinus headache would take sinus pills and in 10-15 minutes get relief and go back to sleep. After a week of this I start to get concerned so while in the ER (I'm a paramedic) I describe the the doc my symptoms and ask him if should get a CT of something. He immediately tells me to go look up cluster headaches.
That led me to this site and I couldn't believe the description of my symptoms word for word although maybe not as frequent and severe. I suppose I am fortunate that I rarely have more than one CH per day and they are usually at night and last only 20-30 minutes.
Later that week while working shift I was awakened with a CH. I sucked down an entire bottle of O2 and after more than an hour had my partner drive me to the ER. I got the requisite CT and LOTS of narcotics and finally broke the CH. My family doc prescribed prednisone and that took care of my cycle.
My second cycle was rather uneventful. After suffering two nights my family doc called in the prednisone and darvocet and that immediately halted the cycle.
This time is different. I completed the round of prednisone (the cycle stopped with the first dose) but as soon as I stopped the steroids the cycle started again. Now I am scared as I think this is only getting worse.....and that's why I am here.
I'm not sure if this was the appropriate forum for this entire story but not that it's all typed out I guess I push the post button.
DH
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Jonny
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Re: Who is who here to the newcommers
« Reply #51 on: Sep 10th, 2005, 1:58pm » |
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This whole site is the right forum, Dave!
Welcome aboard, but sorry you have to be here, man.
Read up, theres lots of great info.
...............................................jonny
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| « Last Edit: Sep 10th, 2005, 1:59pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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phantom12
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Re: Who is who here to the newcommers
« Reply #52 on: Sep 11th, 2005, 11:53am » |
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Hi, my name is Tom. I had no idea what a ch was until this year. I have been getting headaches off and on for years! I just got over a condition called vestibular neuronitis, in which the vestibular nerve in the middle ear is affected, causing vertigo and headaches. I went three years without any type of headache.
Anyway, I was out of work for three weeks and felt better to go back! Then I started getting real nasty headaches. Went back to my neurologist and pointed on the headache board that he had at a diagram of the ch's. I just realized all these years I was misdiagnosed with sinus headaches. The doc put me on a regimen of depekote and indocin. This does not seem to be working as the headaches, after a little more than a week have been getting more intense. Sharp hot pain behind the eye and above the eyelid, the back of the head and the ear, plus intense pain on top of the head.Earlier this week I had some so intense that they went off and one from the afternoon through the night! When I thought it was over and went out to pay the bills It felt like a sledgehammer came down upon my head! I was only a block away from home, hobbled up the stairs and called my stepfather and asked him to take me to the emergency room.(If I had called an ambulance, I would have hit the paramedics if they had touched me, the pain was so bad I couldn't sit still. At the hospital, I was given a shot of toredol and sent home after a few hours. As usual the ct scan and mri's show nothing. I called my neurologist and told him what happened. He upped the dose of depokote and took me off the indocin, which isn,t working.Last night I was awoken by another attack and my head still aches a little. I was told by a co-worker, family and friends to go back to the neurologist as he requested and tell him how bad it has gotten. Afraid to sleep and eat, vomited, albeit a few times, plus have to talk about the disability issue. Just can,t function at all.I sure did miss a lot of work over this just as I got the job and hours I wanted.( the "night shift" less stress) and a month later everything started to fall apart. I,m glad I came across this board because I know I am not alone! Has anyone ever missed a lot of work over this plus just had the feeling of hopelessness setin! I,ve never been at this point before! I,m getting tired of doing the dance!
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Ronny
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Re: Who is who here to the newcommers
« Reply #53 on: Oct 1st, 2005, 12:56pm » |
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Hi, i'm Ronny aka Ronny
I'm 43, CH for about 7.5 years
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northerner
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Re: Who is who here to the newcommers
« Reply #54 on: Oct 6th, 2005, 6:16pm » |
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Hi all. I'm back. So's the beast.
My name's Chris. I don't have a picture. 46 years old, CH for as long as i can remember although not diagnosed till five years ago, when I discovered this board. Some of you were nice enough to help me then, and were a great comfort.
I'm lucky, though, in that the last three years have been pretty much CH free, so I slowly pulled away. Then about a month ago, a cycle started anew. It has been building and building.
Today there were two attacks, the latest just finishing a few minutes ago, a nine on the kip scale. I''ve had a couple 10s this round -- including one last Saturday night in the middle of my son-in-law's father's 65th birthday party (i had to go out into the parking lot, pacing and muttering, what fun a CH is at a party!) -- the pain dragging to the back of the head as if on a hot wire. All of it on my right side. If the past is any guide, i have another two to four weeks in this cycle, but it's also gone longer.
My job is high pressure and of late, with a slight change in duties and hours, has been fatiguing, which may have triggered this round. But who the hell knows.
I have a question. One of the things that keeps me sane is running. A week and a half ago i completed a marathon, my seventh, here in Toronto, my hometown. In the middle of it i had a CH but managed to keep going it was quite mild. But exercise is another BIG-Time trigger for my CH's. As soon as I'm finishing up a run, I can feel the beast beginning to roar. Once I finish my shower, it's in full gory flow.
I'm wondering how other runners handle this.
Thanks for listening. Sorry to go on so. This time, I'll stick around.
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gore2424
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Re: Who is who here to the newcommers
« Reply #55 on: Oct 13th, 2005, 9:34am » |
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Hello all Terry here with my granddaughter Olivia
I live in davenport iowa where the DavCon04 & 05 and soon to be 06 meet and greet I am going to be 51 by then chronic since Nov 1999 before spring and fall for 16 years 
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what the hamsalad was that ¿?¿
I said your hair looks nice Ü
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Tamara_Lynn
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Re: Who is who here to the newcommers
« Reply #56 on: Oct 13th, 2005, 12:02pm » |
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Well hi, my name is Tamara. I am 18 years old and have had CH since I was 16. I was not sure what they were, because they were normally able to ignore if I started to work on something or read a book. But lately, they have gotten worse. They are almost always there and school does not help. which I am home from today because I have had attacks everyday for the last 2 weeks. Although not too painful, it lets me know that it is there.
And least of all, I didin't know that I ad them till a few days ago when I brought it up with my mother and she took me to the hospital.
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| « Last Edit: Oct 13th, 2005, 12:11pm by Tamara_Lynn » |
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nani
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Re: Who is who here to the newcommers
« Reply #57 on: Oct 13th, 2005, 1:41pm » |
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Welcome, Tamara, and sorry you had to find us. I had my first episode at 16 also. Now that you've found us, read everything you can. Information is your best weapon and you are your best advocate.
Feel free to ask questions, there are many her with a great deal of info.
pain free wishes, nani
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ktrygrl_sc
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Re: Who is who here to the newcommers
« Reply #58 on: Oct 15th, 2005, 10:58pm » |
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how do i insert pics? 
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ktrygrl_sc
{stephanie}
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marlinsfan
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Re: Who is who here to the newcommers
« Reply #59 on: Oct 16th, 2005, 12:47pm » |
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you need to post them on a website, then link that site to your post.
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Bondservant
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Re: Who is who here to the newcommers
« Reply #60 on: Oct 16th, 2005, 2:19pm » |
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Greetings: I am Joel, also known as Bondservant. Bondservant refers to my relationship to Jesus. Been getting CHs since 1989... Now 49. Properly diagnosed in 2002. We are Americans living in Stuttgart, Germany. Married to Mary for 24 years. Cannot post a photo yet. .
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LeLimey
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Re: Who is who here to the newcommers
« Reply #61 on: Oct 16th, 2005, 2:52pm » |
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Hello Joel, its nice to meet you!
Are you chronic/episodic/ in cycle? How are you managing med wise? If there is anything we can help with just shout okay?!
Take care
Helen
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Bondservant
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Re: Who is who here to the newcommers
« Reply #62 on: Oct 16th, 2005, 4:11pm » |
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Hi. I'm episodic, but finished cycle two weeks ago. Good on meds. Thanks for asking.
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LeLimey
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Re: Who is who here to the newcommers
« Reply #63 on: Oct 16th, 2005, 4:19pm » |
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Well here is hoping your PF time lasts forever!
Stick around, you may be able to share the "benefits" of your experience - it would be great!
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zanychef
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Re: Who is who here to the newcommers
« Reply #64 on: Oct 17th, 2005, 6:21pm » |
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hi there sorry no pic but then hell i dont want to scare the more sensitive people away 
my real name is Ian so use that if zany aint good enough..
ch'er since 1985 when i was just twenty(what a birthday present i still got it!)episodic for first ten years
now i dont know if i'm chronic,episodic or just plain screwed up! as i seldom have a month without a visit by you know what! but have had two periods of 3 months pain free(your guess is as good as mine on this one folks!)been in and out of hospitals and mental institutes trying to get rid of these things for the last 10 years no luck but i'll keep trying
sorry to have to meet you here but the people are great and i couldnt do without this vent and constant amazement that there are people as daft as me on the world 
feel free to ping me on messenger if you want a chat
zanychef aka ian
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| « Last Edit: Oct 17th, 2005, 6:22pm by zanychef » |
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plenty of time to sleep now me headaches aint too bad
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juvy
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Re: Who is who here to the newcommers
« Reply #65 on: Oct 29th, 2005, 7:00am » |
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Well I'm April aka Juvy.
27 yrs old, married and expecting our first child in Nov. 2005.
Found this place in 2002 but rejoined in 2003.
I was first diagnosed with CH but they changed it to CPH.
I have a rare version that effects both sides of the head and Indometh no longer works for me. My favorite abortive is Ice, I pack my head in it until it goes numb.
Not around as often as I'd like to be but if you have any questions feel free to drop me an email or message.
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kyt
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Re: Who is who here to the newcommers
« Reply #66 on: Nov 2nd, 2005, 8:41pm » |
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Hi I am Kathryn, Kyt to most. I by chance found this site out of desparation and have been here since October of 2005. These are really wonderful people who will embrace you and help you in any way they can. I have suffered with CH since I was 22. I have had the demon for 14 years now. Fortunately I had a great Neurologist who cared and listened and was able to help identify what was going on with me. I have been on various medications, but now use Lithium and oxygen through a rebreather. This is an affliction that once controlled my life. I have been married twice and neither of the mistakes understood. I do however remember being under attack once so bad all I could do was lay down on the kitchen floor and cry. With out saying a word the second mistke's son came in and put a pack of cold veggies on the left side of my face and gently brushed my hair. He kept telling me that he woish he could make the pain go away and make it all better. A gentle soul who could not comprehend such pain but understood how greatly it affected me. This gentle soul of a child kept watch over me for 2 hours until the pain was fully gone. I miss that kid and he is now a teen and I have not spoken to him since the mistake and I split. I have my episodes in the warmer months then into the fall when the first freeze hits. After the first freeze I am fine until summer rolls around again. I am lucky that my attacks happen late at night.
I do want to send out a great big huge note of THANKS! to e-double... your advice on "Melatonin" has given me a little more sleep. I am so greatful to be here. It is very nice to know that there are others out there who understand and would never look at a sufferer and say, "Take an aspirin and get over it." Those words are so frequently usedby the ones who hardly even get a regular tension headache and even though they are so callous this is a pain I wouldn't even wish on them. It has taken me a long time to come to terms with this affliction. We all have our crosses to bear and this happens to be ours.
Thank you all and welcome to those who are new...sorry you had a reason to come here but like the rest glad you found us.
And Jonny.... I am actually the "Queen of EVERYTHING" I have a sweatshirt that sez so.. ha ha ha
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RobHealy
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Re: Who is who here to the newcommers
« Reply #67 on: Nov 8th, 2005, 12:18am » |
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Hello All,
My name is Rob and I live in New Jersey.
I am presently 28 and dealt with my first CH at 14. Had a reprieve from that initial attack for about two years then had my "teenage" bouts for about three weeks at a time about two to three weeks after starting school each year. I enjoyed a one year rest from CH the year after I graduated highschool and have since been mid to late fall episodic ever since EXCEPT in 2002 when I returned to the gym and reaped another PF year. My workout frequency is the same as it ever was, the bouts returned a year later.
Did Sansert for an episode with great success but it made me feel incredibly spaced out. Also didn't like the possible side effects of the drug. ( I hate taking OTC cough medicine, let alone perscription stuff )
I used to do a hot shower treatment for nocturnal attacks then it's efficacy began to wane. I've never been on oxygen, but from reading the theories on how CH works, I turned to ice cold showers to act a s a vasoconstrictor and to induce hyperventilation (nature's way of getting more O2 in ya?!) I still use this and receive moderately good results from it.
I try to abort diurnal attacks with vigorous pushups, concentration curls, dips and pull ups. Ferocious bodyweight exercise I suppose. .. This method that once worked like a charm is now losing it's abilty to snuff out an attack as thoroughly as it once did.
I feel really bad as I've kind of kept in the shadows since I registered on this site many years ago, but I've garnered such great info and a priceless sense of solidarity with fellow CH people, even though I don't speak up much.
As for non CH related stuff: I love cooking, music, motorcycles, horror stuff, sci-fi, craft beer and brewing and being in the company of good hearted people whether they're interesting or not.
I hope you all have as many pain free days and nights as possible!
My best,
Rob
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| « Last Edit: Nov 8th, 2005, 12:23am by RobHealy » |
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Jasmyn
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Re: Who is who here to the newcommers
« Reply #68 on: Nov 8th, 2005, 3:07pm » |
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Hi there and welcome Kyt and Rob!
Always bad to hear there are more CH'ers out there but sooo glad you guys are here now. Kyt sorry to hear your boss is not an understanding person but there is a letter here for employers.
This is the best place to be as you will get great support and info here.
Hang in there, read and read more and wishing you painfree times!
Jas
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Jazz
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Rebel_Python
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Re: Who is who here to the newcommers
« Reply #69 on: Nov 9th, 2005, 8:29am » |
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I'm another newbie, Jason Adams aka Rebel Python. Thank God, (or whoever else is in charge of this mess down here) I found this site. I'm 34 and have been chronic since I was 15. I'm really looking forward to getting to know everyone as this Demon in my head seems to dictate that I don't have many friends anymore cause they think I blew a fuse. Atleast after reading this site,I'm not the only walking dead out there.
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Jason P Adams..........Rebel Python
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Dan_The_Man_Howell
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Re: Who is who here to the newcommers
« Reply #70 on: Nov 16th, 2005, 5:08pm » |
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Hi there. my name is Daniel Howell. I finally got a computer. Im out of the stone age! I do not suffer from the terrible beasts but unfurtunately my mom, Linda howell does. Furtunately, she has you wonderfull people who support and understand her pain as only you can. Thank you . Also thank you for sending well wishes after my accident. Finally , thank s to my moms freind who sent me the scrumptios tea and crumpets from across the pond.
Like my mother, im computer illiterate and cannot post a pic. I have pics in my computer so maybe someone can explain how i get them fom my pic file or e mail to the message board.
Dan howell mydboy00@yahoo.com
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Margi
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Re: Who is who here to the newcommers
« Reply #71 on: Nov 16th, 2005, 5:28pm » |
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Wow, Dan - it's so nice to see you posting! Your mom showed me a picture of you when she was up in Kelowna, BC, Canada a couple of summers ago.
I feel sorry for you if you've inherited your mother's computer gene, kid. (just kidding, your mom knows I love her!)
To post pictures here, you'll have to upload them to a website that hosts pictures www.picturetrail.com for example. Then, once they're there, you right click the image to get the address (URL). Then come here and click the Image icon above - the one that looks like a picture and paste that URL in between the image tags.
Or...you could just email the image to someone and they could post it for you. Jonny's good at doing that.
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kathy copelin, ch.com 8/8/06
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Linda_Howell
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Re: Who is who here to the newcommers
« Reply #72 on: Nov 17th, 2005, 1:31pm » |
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To Daniel:
awwwwwwwwww. How great that you came here to see what(and who) I've been talking about all these yrs.
To Margi:
You referred him to Jonny?  Next time I see him he might have tats and hair down to his waist.
The nice lady that sent the tea and crumpets to you is Helen (LeLimey)
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Margi
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Re: Who is who here to the newcommers
« Reply #73 on: Nov 17th, 2005, 3:00pm » |
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Luinda, LOL - but you know what? It's a good look for Jonny...it might be for Daniel too, ya never know!
There are lots of women out there who would kill to have Jonny's hair, you and I both know that.
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http://askusaboutourgrandkids.photosite.com/
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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Jonny
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Re: Who is who here to the newcommers
« Reply #74 on: Nov 17th, 2005, 3:23pm » |
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on Nov 17th, 2005, 3:00pm, Margi wrote:There are lots of women out there who would kill to have Jonny's hair, you and I both know that.
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Could be I will be bald jonny soon, Cathy in England starts Chemo soon and if she loses her hair I may shave mine and send it to her.....thats if she can find someone to make a wig.
Now thats a new twist on helping people with their heads
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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