Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 Yeah. I do have someone on Facebook (met through ctoma group) who is also trying to get shirts made over in the UK so she could ship at a better rate and all that. We are making a website and trying to get things up and running. I have emailed several venues about doing events to help support Cholesteatoma awareness and research and all that. We will see what happens. My frustration was going to the ER and Local hospitals, and Urgent Care Clinics and being told there was nothing they could do for me that I just had to wait for the specialist. I was in so much pain at the time hearing that was just unacceptable to me. I remember at one ER I had to actually tell the ER physician and nursing staff what a cholesteatoma was...they went and researched it on the computer!! I mean come on now. I should NOT have had to pay for that visit. JenniOn Tue, Apr 26, 2011 at 11:03 PM, Jane Fraser <janefraser101@...> wrote: Being in South Africa the exchange rate and postage costs are a bit prohibitive for us to participate in the t-shirt order.But we have found this group very helpful.My son had a check up yesterday. 1 year post 4-hour RHS op to remove serious c-toma and 6 months post LHS op to remove and reconstruct a smaller c-toma. We are declared clean and safe and are on 6-monthly visits now. We are discussing doing a reconstruction i the RHS ear within the next year to insert prosthetic ossicles to try to recover some of the RHS hearing (he only has a stapes footplate left). Our ENT is wonderful and we are forever grateful for his brilliant and friendly care. We discussed not getting to see each other as often now and we are planning a social outing instead now, because we have all become such good friends. (Our kids are in the same school too). On 27 April 2011 05:48, kiekeboe4you <kiekeboe4you@...> wrote: That is a terrific idea Nate about the link to this forum. I have also been working on another forum Cholesteatoma - The Hidden Disease Should be going within a few days Some people like this group and the way the messages are sent/received but yet some are confused and prefer the facebook page. Some complain about the facebook group, having to scroll down to far to view messages. On the forum, all you'll need to do is click new posts ) I hope it will be just as successful as our & facebook group and look forward to seeing many of you there. It makes me so happy to see all the interaction and friendships formed and the bonds that we share dealing with this hidden disease!!! Thanks to each & everyone one of you that helps make this support group so terrific!!! >> I too like the " ...pain in the ear " idea, along with a link to this forum. > > I am thinking of buying a few and will let you know how many next week.> > -Nate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 Count me in for a "pain in the ear" shirt! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 Hi, I am not a frequent poster, but I would like to get a couple of Tshirts if that is OK. We live in Australia, so would it be possible to post them to me? Our dollar is fantastic against the US at the moment, so I can't see it turning out to be much. I could transfer the money straight to your bank account, or via paypal or by money check. All in US dollars, so you wouldn't need to worry about the exchange rate. I would like the pain in the ear ones. Could I have a mans large, ( I will give this to my sons doctor.) Also a childs size 12. I think my son would love it. Thanks > >> > > >> > I too like the " ...pain in the ear " idea, along with a link to this > >> forum. > >> > > >> > I am thinking of buying a few and will let you know how many next week. > >> > > >> > -Nate > >> > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 I saw u guys were doing t-shirts, i wondered if u needed a person to help with the designs for cholesteatoma pain in the ear? I have done some t-shirt art for a biggest loser group I was in for work, I had two different designs. Sent from my iPod Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Sure you can send me some of your designs. I have them being designed at the company I am ordering from and gave them some of my ideas but we could always use more. Each design plate costs me $25 but once they have it they keep it and can print future shirts for super cheap. JenniOn Fri, Apr 29, 2011 at 3:40 PM, Haughey <powertohippies@...> wrote: I saw u guys were doing t-shirts, i wondered if u needed a person to help with the designs for cholesteatoma pain in the ear? I have done some t-shirt art for a biggest loser group I was in for work, I had two different designs. Sent from my iPod Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Chloe wants one in kid's size 12. Pink if you can get it .LOL On Fri, Apr 29, 2011 at 12:14 AM, <wadvani@...> wrote: Hi,I am not a frequent poster, but I would like to get a couple of Tshirts if that is OK. We live in Australia, so would it be possible to post them to me? Our dollar is fantastic against the US at the moment, so I can't see it turning out to be much. I could transfer the money straight to your bank account, or via paypal or by money check. All in US dollars, so you wouldn't need to worry about the exchange rate. I would like the pain in the ear ones.Could I have a mans large, ( I will give this to my sons doctor.)Also a childs size 12. I think my son would love it.Thanks > >> >> >> > I too like the " ...pain in the ear " idea, along with a link to this> >> forum.> >> >> >> > I am thinking of buying a few and will let you know how many next week. > >> >> >> > -Nate> >>> >>> >> >>------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Maybe we should have a shoulder emblazoned with a chevron for each surgery! Although, I'm not sure Chloe's t-shirt would have enough room .... maybe really really really thin chevrons. s wrote: > Chloe wants one in kid's size 12. Pink if you can get it .LOL > > > On Fri, Apr 29, 2011 at 12:14 AM, <wadvani@... > <mailto:wadvani@...>> wrote: > > Hi, > > I am not a frequent poster, but I would like to get a couple of > Tshirts if that is OK. We live in Australia, so would it be > possible to post them to me? Our dollar is fantastic against the > US at the moment, so I can't see it turning out to be much. I > could transfer the money straight to your bank account, or via > paypal or by money check. All in US dollars, so you wouldn't need > to worry about the exchange rate. > > I would like the pain in the ear ones. > > Could I have a mans large, ( I will give this to my sons doctor.) > > Also a childs size 12. I think my son would love it. > > Thanks > > > > > > > > >> > > > >> > I too like the " ...pain in the ear " idea, along with a link > to this > > >> forum. > > >> > > > >> > I am thinking of buying a few and will let you know how > many next week. > > >> > > > >> > -Nate > > >> > > >> > > > > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2011 Report Share Posted April 30, 2011 She would wear it with honor:) She loves it when people say " How many sugeries have you had? " She just looks at them with that aristocratic boredom and replies, " Oh, only thirteen. " She has a future on the stage! On Fri, Apr 29, 2011 at 11:28 PM, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2011 Report Share Posted May 9, 2011 I am placing the order today and still haven't heard back from about 8 people who I emailed this weekend...if you are interested in ordering they are $6.50 each for sizes up to XL then add $1 extra for larger sizes...shipping will be $5.20 for up to 3 shirts and $10.95 for more than 3 shirts...my surgeon ordered 5 shirts!! He loved the idea and got a great chuckle out of the wording...it was GREAT!!! Jenni > > She would wear it with honor:) She loves it when people say " How many > sugeries have you had? " She just looks at them with that aristocratic > boredom and replies, " Oh, only thirteen. " She has a future on the stage! > > On Fri, Apr 29, 2011 at 11:28 PM, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2011 Report Share Posted May 9, 2011 I would like one XL, one L and one smallest you have (boy is a 4t)Thanks JanetJanetmunro3@...Sent from my Verizon Wireless BlackBerryFrom: "" <moonshadow2447@...>Sender: cholesteatoma Date: Mon, 09 May 2011 16:54:43 -0000<cholesteatoma >Reply cholesteatoma Subject: Re: T-shirt Idea I am placing the order today and still haven't heard back from about 8 people who I emailed this weekend...if you are interested in ordering they are $6.50 each for sizes up to XL then add $1 extra for larger sizes...shipping will be $5.20 for up to 3 shirts and $10.95 for more than 3 shirts...my surgeon ordered 5 shirts!! He loved the idea and got a great chuckle out of the wording...it was GREAT!!!Jenni>> She would wear it with honor:) She loves it when people say " How many> sugeries have you had? " She just looks at them with that aristocratic> boredom and replies, " Oh, only thirteen. " She has a future on the stage!> > On Fri, Apr 29, 2011 at 11:28 PM, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hi Jenni I also wanted a couple of shirts and didn't seem to recieve the email. If it is not too late, I would like a mans XL and a child's size 12 for a boy. Also, mine need to be posted to Australia, so I think my postage would be considerably more. > > > > > > She would wear it with honor:) She loves it when people say " How many > > > sugeries have you had? " She just looks at them with that aristocratic > > > boredom and replies, " Oh, only thirteen. " She has a future on the stage! > > > > > > On Fri, Apr 29, 2011 at 11:28 PM, Quote Link to comment Share on other sites More sharing options...
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