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Medical Forum / Diseases and Disorders / Sinusitis / March 2006Sinus Self Help Support Group
Hi my name is Lauren and I am starting a sinus support group. I have had 4 surgeries, chronic sinusitis and allergic fungal sinusitis. I have been in the ICU because of sinusitis and I have been suffering for years. I wanted to start this website to help other people who suffer from this too. I am looking for your opinions on my site (please don't be mean and nasty - polite criticism is welcome) and I am also looking for sinusitis "stories" so if any of you are aspiring writers and would like to publish an account of your situation on the web, with your permission I would love to post your story. This is a work in progress with a lot more that I want to add. I am going on vacation for about a week so much of the new stuff will be added when I get back. Please take a moment to visit: http://www.sinusgroup.org and tell me what you think. Warmly, Lauren in Chicago > Hi my name is Lauren and I am starting a sinus support group. I have > had 4 surgeries, chronic sinusitis and allergic fungal sinusitis. I [quoted text clipped - 18 lines] > > Lauren in Chicago Why not just participate here if you want to help sinus sufferers? Susan Because I like web development and wanted to teach myself how to develop a website. I have been so sick lately that I put my kids in school full time (3 and 5) and I want to contribute somehow to sinus sufferers. I also plan on using the website to lobby for more research on chronic sinusitis. > Because I like web development and wanted to teach myself how to > develop a website. I have been so sick lately that I put my kids in > school full time (3 and 5) and I want to contribute somehow to sinus > sufferers. I also plan on using the website to lobby for more research > on chronic sinusitis. I guess I think this is very accessible, has a core of knowledgable folks, and I wonder why your first inclination is to replace it, rather than add to it? You can't support sinus sufferers here while building an informational web site? Are you planning to try to get advertisers to sponsor your web site? Susan > x-no-archive: yes > [quoted text clipped - 13 lines] > > Susan Nevermind, I just looked at your site and answered my own question. If you helped folks here, it'd be for free. Susan I am not sure I understand the above post - my site is free. Susan, I can support sinus sufferers by building an information site - I just thought having everything in one place would nice. I guess we will have to kindly agree to disagree. I am just trying to keep myself busy and my mind off my daily headaches. I haven't even thought that far ahead regarding advertisers to sponsor my site. I am not looking for an income, I have a long history of community activism and grassroots organizing and I decided to do this because sinusitis is my life unfortunately. I have weekly visits to the ENT and it has become a true disability. > Susan, > [quoted text clipped - 7 lines] > unfortunately. I have weekly visits to the ENT and it has become a > true disability. It's become a true disability for me too. I have a suggestion: Instead of an ordinary website, how about hosting a sinusitis blog? I always hoped someone would start a sinus blog. Essentially you would post articles of interest on sinusitis (including a journal of your own life experiences), and invite other people to comment on those specific articles. Blogging software is now available for free on the net.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Susan, I can support sinus sufferers by building an information site - I just thought having everything in one place would nice. I guess we will have to kindly agree to disagree. I am just trying to keep myself busy and my mind off my daily headaches. I haven't even thought that far ahead regarding advertisers to sponsor my site. I am not looking for an income, I have a long history of community activism and grassroots organizing and I decided to do this because sinusitis is my life unfortunately. I have weekly visits to the ENT and it has become a true disability. Susan, I can support sinus sufferers by building an information site - I just thought having everything in one place would nice. I guess we will have to kindly agree to disagree. I am just trying to keep myself busy and my mind off my daily headaches. I haven't even thought that far ahead regarding advertisers to sponsor my site. I am not looking for an income, I have a long history of community activism and grassroots organizing and I decided to do this because sinusitis is my life unfortunately. I have weekly visits to the ENT and it has become a true disability. Susan, I can support sinus sufferers by building an information site - I just thought having everything in one place would nice. I guess we will have to kindly agree to disagree. I am just trying to keep myself busy and my mind off my daily headaches. I haven't even thought that far ahead regarding advertisers to sponsor my site. I am not looking for an income, I have a long history of community activism and grassroots organizing and I decided to do this because sinusitis is my life unfortunately. I have weekly visits to the ENT and it has become a true disability. I am sorry for all the duplicate posts - my daughter was sitting on my lap and I didn't know she was leaning on my keyboard. Susan, I can support sinus sufferers by building an information site - I just thought having everything in one place would nice. I guess we will have to kindly agree to disagree. I am just trying to keep myself busy and my mind off my daily headaches. I haven't even thought that far ahead regarding advertisers to sponsor my site. I am not looking for an income, I have a long history of community activism and grassroots organizing and I decided to do this because sinusitis is my life unfortunately. I have weekly visits to the ENT and it has become a true disability. > Susan, > > I can support sinus sufferers by building an information site - I just > thought having everything in one place would nice. You have a nice website. You should change the wording that indicates your discussion group is the first support group and online community for sinusitis disease sufferers and add a link somewhere for this Usenet group. This group has been active for 11 years. There are other online sinusitis groups but most aren't very active. Usenet was around a long time before Google was born. DejaNews used to archive Usenet groups and now that Google owns DejaNews they took over archiving but their are many ways to access Usenet besides using Google. Under the Pain icon you mention the Headache Clinic run by Dr Cady in Missouri. Have you seen Dr Cady? He used to have a radio program broadcast in the Midwest that I'd listen to when visiting the area. best, AW > > Susan, > > [quoted text clipped - 15 lines] > > best, AW Susan, I can support sinus sufferers by building an information site - I just thought having everything in one place would nice. I guess we will have to kindly agree to disagree. I am just trying to keep myself busy and my mind off my daily headaches. I haven't even thought that far ahead regarding advertisers to sponsor my site. I am not looking for an income, I have a long history of community activism and grassroots organizing and I decided to do this because sinusitis is my life unfortunately. I have weekly visits to the ENT and it has become a true disability. > Susan, > > I can support sinus sufferers by building an information site - I just > thought having everything in one place would nice. I guess we will > have to kindly agree to disagree. Works for me. > I am just trying to keep myself busy > and my mind off my daily headaches. Can't you keep busy without luring people away from an established support group? I haven't even thought that far > ahead regarding advertisers to sponsor my site. There's advertising on your site now, if I'm not mistaken. I am not looking for > an income, I have a long history of community activism and grassroots > organizing and I decided to do this because sinusitis is my life > unfortunately. I have weekly visits to the ENT and it has become a > true disability. I'm sorry your sinusitis is so severe. We're all here because our sinusitis has been debilitating. This is a support group, we all know what that's like. Susan There's advertising on your site now, if I'm not mistaken. > I am trying to break even on my monthly webhosting so I can justify to my husband why I am doing this. I have been looking for a support group for about 5 years and I just found you guys today - I guess I didn't look hard enough. With 37 million people suffering from sinusitis I am sure there is a teeny tiny portion of the that community that I could effectively reach and help - that doesn't know about this group. I also think it is reasonable that people who have disabilities like this can also belong to more than one group - personally I wouldn't rely on any "one" group for all of my support or information. > There's advertising on your site now, if I'm not mistaken. > > > I am trying to break even on my monthly webhosting so I can justify to > my husband why I am doing this. I have been looking for a support > group for about 5 years and I just found you guys today - I guess I > didn't look hard enough. ROFL!! It takes about 30 seconds for anyone who's ever been online to find this group. > With 37 million people suffering from sinusitis I am sure there is a > teeny tiny portion of the that community that I could effectively reach > and help - that doesn't know about this group. I also think it is > reasonable that people who have disabilities like this can also belong > to more than one group - personally I wouldn't rely on any "one" group > for all of my support or information. I think you're here to make a buck and that you've already proven to be a liar. Susan Please accept my apologies - I really did not mean to offend you or anyone else. I have done searches before for sinusitis support groups but I didn't know until recently that google had groups - like yahoo does. I am not familiar with usenet groups. I wish I knew more about them. I have also asked every ENT I have been to (and their nurses and PA's) in Chicago for a support group and they could not refer me to one, I humbly apologize for my ignorance. Lauren > Please accept my apologies - I really did not mean to offend you or > anyone else. I have done searches before for sinusitis support groups [quoted text clipped - 5 lines] > > Lauren I don't think ignorance is the thing you ought to be apologizing for, in this case. Susan Susan, Give it a break! She is simply doing something to try to help, and you have such a negative attitude about it. If you don't want to praticipate in it ..fine, but please get over it! >Susan, > Give it a break! She is simply doing something to try to help, and you >have such a negative attitude about it. If you don't want to praticipate >in it ..fine, but please get over it! I agree. She isn't harming anyone, and might be helping many. It's good to have several venues for information - it's what's made the 'net a success. And may I state that not everyone has easy access to Usenet, or even know what it is, nor do some ISPs even provide it. Sure, someone can go to google groups and get the info that way, but it isn't as easy for many people as using Agent - or a good web site for that matter. If she ends up selling snake oil, then everyone will know. Unless that happens, it's better to ease up, or take it private with her. > Susan, > Give it a break! She is simply doing something to try to help, and you > have such a negative attitude about it. If you don't want to praticipate > in it ..fine, but please get over it! I don't know who you are or what your interest in this discussion is, but I've reached a different conclusion about it. I like the blogging suggestions and the suggestion to link to this group. Susan > x-no-archive: yes > [quoted text clipped - 7 lines] > > I like the blogging suggestions and the suggestion to link to this group. In fact, one of the first discussion subjects I would suggest for her blog would be the FAQ of this newsgroup. I've long maintained that the current version of the FAQ is nearly worthless for 95% of the queries we get on this newsgroup. (Notice how practically no one refers a newbie to it, to answer any of the newbie's questions.) A blog would be a great place to start a discussion leading to its total revision--or maybe to its being scrapped altogether. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. >In fact, one of the first discussion subjects I would suggest for her >blog would be the FAQ of this newsgroup. I've long maintained that the [quoted text clipped - 3 lines] >great place to start a discussion leading to its total revision--or >maybe to its being scrapped altogether. Actually my suggestion would be that a wiki would probably be the ideal way. It is designed for collaboration. I can put one up if the interest is there (I am already running a wiki on the server for other domains so it would be easy if someone wants to work on maintaining it). I have emailed you a few times on these topics in the past, but maybe your spam filters blocked my emails or something....... > Susan, I have weekly visits to the ENT and it has become a > true disability. Just curious what in the world would require weekly visits to the ENT Dr unless this means getting an allergy shot? Allergic Fungal Sinusitis - weekly suctioning of mucous > Hi my name is Lauren and I am starting a sinus support group. I have > had 4 surgeries, chronic sinusitis and allergic fungal sinusitis. I [quoted text clipped - 16 lines] > > Warmly, > Lauren in Chicago I visited your site, and it's a nicely-organized work. The advertising doesn't offend me--it's a website and not unexpected--it's better than the spammers who inundate newsgroups. Since you're from Chicago, I hope that you have consulted Dr. Stankiewicz, co-chair of the Otorhinolarngology department at Loyola--he's the best around. I appreciate the constructive feedback on my website. My goal is to have relevant advertising that does not "overpower" or "trick" readers into believing that the advertisement is information. I will be adding a blog and I will be adding a bunch of relevant information. I placed a link to this newsgroup the moment I found this group. It can be found under the "resources" section in the website. I don't consider this group competition or other groups out there as competition for my website. All I really want to do is provide new, timely, relevant, breaking news for sinusitis sufferers. I feel that the sinusitis community (information and research) is very fragmented due to the nature of the disease. I have also found out some very interesting things regarding my own health that have really helped me recently and I want to share them with others. I might put a promotion together where if you sign up for the community you will get a free ebook. I am currently being treated at the University of Chicago. Dr. Naclerio is my ENT and Dr. Corey is my allergist. They have been invaluable as a resource for me over the last 2 years. I have seen Dr. McMahan, Dr. Panje, Dr. Allegretti, and a few others to name a few. I have not seen Dr. Stankiewicz - however I will keep that information handy. I have figured out that sometimes you need to change doctors to find relieve or find someone to "think outside the box", or even for second opinions. I am posting from Florida at the moment - the weather is really quite nice here I am surprised I don't have a headache from the flight and the mold. Lauren I visited your site and also think it is well organized and informative. I don't see that it impinges in any way on this forum. It is a different format, and I see it as a welcome addition to all of us who suffer from chronic sinusitis. This forum has been indispensible and will continue to be so, but I don't see why anyone would object to another support group. I hope you are open to suggestions on articles, experiences, etc. to include in the future. Kathyw > I appreciate the constructive feedback on my website. My goal is to > have relevant advertising that does not "overpower" or "trick" readers [quoted text clipped - 25 lines] > > Lauren Thank you Kathy, yes I am open to suggestions regarding articles, etc. I think that people who have medical problems should have many places to go for help, information, and support. I am not looking to replace this forum at all. I am hoping that I will be able to reach people who would otherwise not be able to find this forum. I will also continue to refer people to this usenet group as long as this group continues to welcome new membership. Lauren Hi Lauren, I think you're sincere in your efforts to help people. If you could get your site to take off, I think it would be a benefit to the community. I'm a web developer by profession, so I'll give you some advice: A site like yours depends on fresh, updated content. By glancing at your source, it looks like you using dreamweaver and it's templating system. For a site with your content model, you should look into one of the free php portal systems (I say php only because your forums use php, and I know your server would support it). The biggest benefit for you there would come when adding news/content, and it's associated workflow. Instead of editing your pages in dreamweaver and uploading all your new content, you would just go input your content over an actual webpage within your site and it would instantly be reflected. There are tons of benefits on top of that, but this isn't the forum for that. I just figured, if you have lofty goals for your site, it's better to implement something like this now than to wait until you have much more content to deal with. Take a look here: http://www.opensourcecms.com/ Good Luck, Tyler Tyler, Thank you, I just posted a question in the forum on www.opensourcecms.com - I appreciate it and may email you later. Lauren |
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