Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think this needs to be said

Hello Jenn,

Welcome to KA! I've noticed that in this thread and the one where this was originally posted, you've already met a couple other members of the site's admin team, mig and Dragon Slayer (John). While I'm late to the party, let me also add my name to that list and along the way apologize for taking so long to say hello. I try to say hi to new members when I notice one of their first posts, but this past week or two I have definitely slipped in that regard while trying to keep up with the seemingly constant chaos in my own life. (Hmmm....now that I think about it, there is a chance that you added a comment to an earlier thread where I made one of my trademark rambling replies to another new member . . . I hope that really happened and isn't a figment of my imagination, as that would mean I did already manage to say "hello" to you in at least an abstract way! Accurate memory or no, now I've said that hello in a very concrete way! )

As soon as I this post where it first appeared (which was just a few minutes ago), my first thought was, "Whoa! She wanted to see more responses, she's going to see more responses!" Lo and behold, I was right! What I am very glad to see--although I should not really be surprised--is that pretty much every response took your post in the spirit it was intended and let it serve as the gentle kick in the pants that we all need from time to time. It is so easy to get caught up reading all the great information here at KA that sometimes we all forget to be as giving with our time as we always hope others will be whenever we take the time to post ourselves. In other words, sometimes we all forget to "Do unto others . . . " I know that I can be as guilty of this as the next person, and as I already mentioned, the last couple weeks have found me posting far less thank I generally like to, which I'll try to correct.

That said, I also noticed with pride that a couple of members found the correct way to let you know that just because it seems as if so many more people are reading your posts than take the time to respond, looks can be deceiving. Mig made a great point about the number of "reads" being kind of artificially inflated because of people going back to read each new post as it gets added to a thread they already started reading (and maybe even commented on during an earlier visit). And Beth, a fellow new member (I'm getting to you next Beth!) made a terrific point about how some folks just don't always feel comfortable expressing themselved in writing. Now, to me, that is the most foreign concept in the world! See, I worked in publishing for 21 years, and when I sit down to write a post, the words just seem to flow across my screen. I've always been a good reader and writer, right back to the days in 1st grade when I burned through all the reading materials in our school (which housed K-5th grade), and when my career forced me to become close to a 100 wpm typist . . . well, let's just say that I bet you could start a betting pool here at KA laying odds on how many words I can type here before my keyboard literally blows up!

So, as I merrily type my way from response to response, I often do forget myself that a ot of people have not had nearly the experience I have when it comes to stringing words together for public consumption. In fact, I bet if you asked, many folks here would tell you they would feel more comfortable wearing pork chop underwear in a den of lions than they would typing out a response in a public forum! And believe me, NOBODY wants to get caught wearing those aforementioned skivvies, so just imagine how much dread they feel when they face the keyboard!

Finally, as you have already noted in your post, at any given time, quite a few of our AS kickin' brothers and sisters are really, really struggling with the problems they are facing from both AS and life in general. Even as we speak, there are some truly, truly wonderful members who normally make dozens of posts every month (each one seemingly nicer than the last!) who are simply being forced to look inward right now because of the obstacles in their path. This is a real shame, too, as the folks I'm thinking of are especially adept at welcoming newcomers such as yourself; we are all left a bit poorer in their abscence. Because every single member of this great site will, unfortunately, almost certainly face such down periods during their time here, I am always thrilled whenever new members such as yourself join in and begin posting away. I firmly believe that for every member who only lurks or posts from time to time, KA is blessed with another member whose number of posts seem to increase in increments of 10 or 100, not one. That view makes me a bit of a Pollyanna when it comes to this topic, I know, but that's ok--I'm a firm believer in karmic balance, and believing that our prolific posters balance out our lovable lurkers is a prime example of that!

OK, so even though I was kind of forcing the cure and clever side of things in that last paragraph, the core message is one that is SO important to remember during your days at KA. Whether you end up staying at KA for one month or 10 years, try to avoid falling into the "gee, my post only got X responses," trap, as it will only frustrate you and lead to negative feelings that will sidetrack you from your real reason for being here. Instead, savor the responses you do receive whenever you make a post of your own, and revel in the knowledge and beauty that you will find SO often in other threads, often in the most unlikely locations. Also--and this is important--if there is ever, and I do mean EVER a time that you absolutely need more help than you received when you made a post that asked for assistance, do NOT hesitate to make a post a second time in the main forum. If you ever have to do that, go ahead and use all caps when you type out your subject line, which should be as blunt and direct as you need to be at that moment. Something along the lines of "THIS IS A REPOST, BUT I REALLY NEED EVERYONE'S HELP" should get the job done. Believe me, this won't offend anyone because--as I've tried to explain in this post--there are dozens, if not hundreds, of very good reasons why a post might not get many responses the first time around. As you've pointed out, the very raison d'etre of KA is to provide Kindness, Information, Compassion and Knowledge to those with AS, a mission that must be met even if you occassionally have to bop folks over the heads with the typed equivalent of a big foam bat to ensure that it is!

On to respond to a few other new members before going to bed! Once again, welcome to KA Jenn, and thanks for bringing up an important topic.

Brad

Hiya AZJenn I agree,

One thing about this board is that newcomers should really post in the main forum.....it is not as strict or formal as other forum's.......maybe a stickey!

I know what I first joined there was a big effort to welcome newcomers and answer subsequent posts promptly, I'll make a bigger effort when I can promise as I'm in a different time zone!

Dave

I understand that many have been here for months and even years, and that they know each other and they now have other things to talk about other than their illnesses and complaints...BUT

BUT do remember there is such a thing as compassion fatigue. There are many here who now only post occasionally but who posted a great deal in the past. Burn out, and they were all volunteers after all.

Jenn,

Please forgive me for being "late to the party" to welcome you to KA. I hate to make excuses because I really do like welcoming new members and providing input where & when I can. I'm still trying to recover from surgery I just had a month ago and now that I'm just back to work, I haven't had much energy left after I get home for much except the couch and then bed. Having a very hard time making the transition I guess.
Anyway, I thought I'd check in at work this A.M. while I had a moment and saw this and didn't want to leave it unanswered. This is a wonderful place with lots of friends. I know I've also put posts up here (as I'm sure most people have) who were expecting a lot more responses than they got to issues that were vitally important to them. I also know from my own personal experience (and I do read most posts) that I can empathize with people and keep them in my prayers, but I don't really know what to say that can lend advise or anything positive, so I may not respond at all. That dosen't mean that I don't care, it simply means I just don't know what to say. Unlike Brad, I'm not very good with words. And belive me, Brad is GOOD with words!!
I would like to offer my welcome to you and add that I am more than willing to help in any way I can even if its only to keep you in my thoughts and prayers. Believe me, without this place over this past 1.5 months with my pre-surgery concerns & post-surgery recovery, I would've gone crazy. There were some really good friends who lended their support with answers to my rants. But I've been here long enough to know that even the friends I have here who didn't respond cared and I'm sure thought and prayed for me.
I would also welcome any PM's if you want and I will always answer those if you ever need to chat with someone. I can at least lend an ear.
Best of luck to you. I hope you get the answers & support you so richly need & deserve.

Glenn

Hi Beth,

Just wanted to say hello, and welcome to Kick AS! I know I can speak for everyone when I say that we are all very glad you took the time to figure out how to make that first post--good for you for not hesitating to ask your daughter to help you out! Of course, hearing that you did need her help--and that you still aren't sure how to make your own top-level post--does let me know that our admin team needs to make sure we are always giving new members all the tools they need to dive into the site feet first. Hopefully, after you read this post and one or two others I point you toward, you'll feel like a long-time veteran when it comes to any "how to post" issues!

First of all, I'm going to begin with a general post that I try to leave for every new member when I notice them posting for the first time. This isn't any kind of formal "welcome wagon," but rather just a quickie introduction that I whipped up a while ago and refined quite a bit right now. It gives you an idea of what to expect when you check out some of KA's 17 specialized forums, each of which addresses a specific slice of the KA pie. Among these forums are:

• Interested in alternative and non-pharmaceutical ways of dealing with your AS? Then check out the NSD Forum to learn all about the No-Starch Diet, which has absolutely worked wonders for many of our members and may be at the very core of how AS should be treated. Or, check out the aptly titled "Alternatives" forum to check out lots of other nontraditional treatment options.
  
• Alternatives not your cup of tea, but instead you want to learn about new drug options for treating AS? You'll want to visit the Anti-TNF and Other Biological Medications forum or the broader AS Pharmacy forum.
  
• Ever encounter a specific problem that hit thanks to AS, then come up with a great, possibly one-of-a-kind solution to that problem that you just HAVE to share with yuor fellow AS kickers? Or maybe you're stuck at the problem phase and hoping other KAers might have already come up with a solution that will work for you? I'm sure it won't surprise you at all to find the Helpful Tips forum, where KA folks rush to share their moments of inspiration--and perspiration (from the frustration you feel when, you know, you have a prob....aww, forget it, I was reaching on that one, I know!
  
• We've got separate men's (called No Ma'am) and Women's forums for gender-specific issues, especially ones you might not feel comfortable discussing in the main forum. In addition, there's a special Friends and Family Support Group for loved ones whot want to learn more about your disease. Perhaps more importantly, it gives the people in your life a place to share with others who understand how hard it can be watching a loved one fight AS and a safe haven to discuss the stress it can cause in their own lives, which is so often overlooked. [Note: I've edited my original post because I was wrong about the Family and Friends forum being private. -B.] Please note that while the Friends and Family forum is open to all, the men's and women's forums are private; to gain access to the forum that applies to you, all you have to do is send a PM to me or any member of the KA administration team (any name that appears in red or green!).
  
• Tired of talking about not feeling so good and just want to relax for a while? Visit Kicking Back in the ASylum, where having fun talking about anything but AS is the only instruction you have to follow. Or, if you want a guaranteed laugh, then head to the Jokes forum.
  

That's only a partial list of the specialized forums here at KA--just wanted to give you a basic idea of the amazing amount of information you'll find here. Click on the "Main Index" link up above to see the entire forum list. When trying to determine which forum is best for you at any given moment, remember that some forums are busier than others, so it might take a while to get a response in the lightly trafficked ones. And hey, you can never go wrong posting in the main forum, the #1 AS Web Support Group (psst...that's where you are right now!).

Alrighty then! Now that I got that out of the way, I had a couple of quick questions after reading your post. You say that your doctor recommended KA to you--that is not something we hear very often, believe me! In fact, I'd say that is one with-it, enlightened doc you've got there--what city is s/he in? It's really great to hear that at least one doctor out there knows about KA and is helping us to spread the gospel according to KA (well, one that doesn't have AS and belong to KA, that is, as we've got a couple doctors in our midst because they actually have AS). Did he say anything about the site other than simply telling you to check it out?

I am sorry to hear that you were so confused by our layout and had ultimately could not figure out how to start your own new thread. I've got a couple tips that can help you out with that and other navigation issues: 1) Do not pass Go, do not collect $200--go immediately to the post called "USER GUIDE" which is a stickie post right at the top of this forum. Once in the post, click on the link to the actual User Guide, a brief, but well-done, document put together by the folks who produce the software we use to run the KA forums. It will tell you how to do all the basics: making new posts, replying to posts, changing how you view posts, and many more. 2) You can alter your display preferences in order to change the way KA looks on your screen, and some of these changes will make it easier for you to follow threads and make posts. This information is covered in passing in the "Customizing the Look and Feel" section of the User Guide, but I'll cover some specifics. At the top of the page, click on "My Home" to get to the page where you'll find your private messages and all of your personal preference controls. At the top fo the page you'll see your PM mailbox, so just scroll down a bit until you see the section called "Main Configuration."

In that section, the middle option is "Display Preferences . . .". If you look to the right, you'll see the word "Edit" listed for all of the Configuration sections; click on the one directly to the right of Display Preferences. This will bring up the screen that contains numerous settings that control how KA will look on your screen. Right near the top you'll see "Which Style Sheet (skin) do you want to use for your display?," which is right above a drop-down menu. On that menu, you've got about 30 different color and font schemes from which to choose. Select whichever one you want to try, then click on the "Preview" button to the right of the drop-down menu; once you find the one you like, just leave that one in the menu window so you can save it once you've made any other display changes.

As you scroll down the Display Preferences page, you'll see settings for date and time, what you want to appear as your start page, the default display and default view settings (more on those in a moment), number of posts you want displayed on one page, size of your text box when making posts (generally, don't change these numbers unless your monitor's resolution setting is forcing you to scroll sideways to read every post), and whether or not you want to view pictures within posts. Most of these are self-explanatory and, usually, do not need to be changed from their default values. However, anything you do want to change, it is easy to do so and then take a look at how those changes will affect your display by clicking "Submit" at the bottom of the screen; if you don't like what you see with the new settings, just hit the "Back" button and reset any changes you made to your Preferences.

The two options you really might want to change are the Default Display and Default View. These two determine how messages (also called posts) appear both on a forum's main page and within an individual message once you click on it to read it. Any post that appears on a forum's main page is called a "top-level" post, as all replies to that post are grouped underneath it. The Default View allows you to change how posts appear on the main page only: If you select "Expanded Topics," you will see not only a list of top-level posts, but also the links to every response to that top-level post as well. Responses are indented from the left of the screen, as are responses-to-responses, etc. Most people find this the Expanded Topics to be too cluttered and confusing. Instead, they prefer "Collapsed Topics," which displays only the top-level posts on a forum's main page. (Please not that you can also change the Expanded and Collapsed settings at the top of the main page of any forum--right above the first post, at the far right-hand side of the screen, you will see either the word "Expand" or "Collapse," depending on which setting you chose on the Display Preferences page; simply click on the word to change to the opposite view.)

The Default Display determines how each post will look once you've clicked on the top-level post on the forum's main page. If you choose "Flat Mode," every response to a top-level post will appear in its entirety immediately following the top-level post. Responses will appear chronologically as they were made, earliest to latest. You can determine how many of these complete responses appear on one page via the "Total posts to show on one page when viewing in flat mode" option right there on the Display Preferences screen. The default is 10, I prefer 20 so that I don't have to flip through so many pages when a post has received many responses. The main reason people prefer Flat Mode is because they are able to immediately begin reading all of the replies to a post without doing anything else. In a post with only a few replies, it is very easy to read all the posts that followed the top-level. However, if a top-level post received many responses, and those initial responses then received many responses of their own, it can become almost impossible to determine who was responding to whom (yeesh, Mr. Editor isn't even sure if I got that one right!), since the posts are in overall chronological order.

It is on such lengthy posts with multiple responses that the other Default Display option comes in handy. It is called "Threaded Mode," and it treats the responses to a top-level post as a hierarchy that is continued when responses are made to the responses. This is a very hard concept to explain with words alone. To understand what you will see in Threaded Mode, I highly recommend you view the screen shots found in the User Guide under "Change from Threaded to Flat Display." In addition to the different look of the Threaded Mode, using it is much different than Flat Mode, as each post made after the top-level post must be clicked on individually in order to read it. (Please not that you can also change the Flat and Threaded mode settings once you've clicked on any top-level post. At the top of the page--right above the first post, at the far right-hand side of the screen, you will see either the word "Flat" or "Threaded," depending on which setting you chose on the Display Preferences page; simply click on the word to change to the opposite view.)

Phew. I didn't realize when I started to explain the Display Preferences options that it would take so long to run through them and be rather convoluted to do so. I fear I have made things more confusing instead of making them easier to understand, and if that's the case, well, oops, sorry about that! If I did bungle these explanations, then please just ignore that portion of my post and stick with the User Guide, or simply play around a little until you find the display settings you like. How's that for having confidence in one's own writing?

If you are thoroughly confused now Beth (or any other new member who read this), or if you have any other questions, don't hesitate to either make a post in this forum, or send me a PM.

Again, welcome to KA, and we are very glad to have you. Don't you worry at all about how you sound when you write something down--you did a great job on your first post, as it wasn't hard to read or understand at all. Most people can handle the type of writing required in forums just fine, and you are no exception to that. Besides, it's much more important for you to ask questions and get your ideas out there than it is for you to be grammatically correct or use formal English. Never hesitate to dive right in, ok? That is true for any new member reading this right now!

Brad

Hey Bill,

Welcome to KA! Glad that you found us here on the web.

I just noticed your job description--wow, how is the stress from that combining with your AS? I imagine that can get pretty tough, but hope I am wrong about that!

Instead of repeating my larger "welcome" post within the same thread, please skip down to my post to Beth if you want to check our more basic information about KA.

Thanks,

Brad

Hi Jenn,

I "think" I welcomed you when I told you how much I love AZ but if it was only a thought I had then Welcome.

I try very hard to answer people and I do very well at times and then there are times like now when I just can't sit but a few minutes at a time and days like the past two when I my eyes are spasming shut.

I think of everyone here daily and I pray for this group daily. If I don't get you answered, it's not because I don't care. Sometimes when I can't sit long, I read some and pray about it but I realize all of you don't know that. All you know is that you didn't hear from me and I apologize for that.

I would never have made it through some tough times if it weren't for the good friends that I have made here. Also, the ones of us who do visit each other and telephone, email, etc. have been together for a lot of years. It really didn't happen overnight. It just takes a little while to get to know each one enough to know their families and what is going on in their lives to be able to do that.

I will try to be more aware and try to be here more often to spend more time with you who are new here. Don't give up on us. Everyone is welcome and you will be a big part of this family.

I hope you have a glorious day today.

Hugs and Blessings.
Possi

I had just posted to sarahmd yesterday how wonderful I think she is because she always welcomes newcomers even if she does not have any experience or suggestions for them to whatever they posted but she always gives them a warm welcome. I told her that becasue of her I too try to catch the new comers to welcome them even if I dont have any answers for them. I use to just reply to those that I had experience or suggestions to their problems. Sarah is a wonderful person a great roll model for us all. It is very scary to some to post that first post.

The one thing I like about kickas is that there is a lot of class here. This same thing happen on another forum that I go to and the responses were very different then what you are getting. There were so many offened people that they sent some nasty responses. I am so glad you are getting positive responses. For me I feel like this forum is all about support and if someone is feeling like they are not getting it then like you speak up. Everyone has feelings and needs to be heard. I really like how everyone has respected your feelings instead of take offence to them. Everyone on this forum that I have come into contact with have been awesome. I don't think anyone on here would ignore you on purpose. I have been on here only a few months and have built bonds with some wonderful people on here. Sometimes you will see someone get a lot of responses and then see someone who does not get as many. Possi is a good example. The reason I think she gets so many responses is becasue she has been here for a long time and has built a lot of bonds with others on here.

I also have seen where some only post about themselves and does not give much support to others. I feel that is fine because they may not be in a state of mind to be able to give any support right now. This is an awful disease and there was a time that I really had no support to give becasue I was such a mess. I feel that their time will come when they are at a better place with this disease and will be able to help others also.

As far as the humor from sarcasm there is one person on this forum that I can never figure out his humor but I really don't think he means anything bad. I think that is just him and I just respect that he is a different personality than myself and try not to take offence to some things that he says. I know he means well but in his own way.
I really hope all of this is making since I just woke up and took my pain meds so my cognitive skills are not at their best. hee hee

My memory is not so good ([**BLEEP**] pain killers)and can not remember if I have ever responed to any of your posts. I try to respond to as many that I have experience with. I do remember seeing your pic and thinking what a beautiful girl you are.

Well gotta go get ready to see the doc. I hope you have a wonderful day and always feel welcome to PM me anytime. I don't work so I try to get on here a few times a day to see how everyone is doing. I was gone for a week on my cruise and am kind of out of the loop of things. Alot can happen on here in a week.

HUGE HUGS TO YOU
Kelly

Raquel,
You are so sweet! Thank you so much!

And there are some people who do have sarcasm and I think if you're not a very sarcastic person yourself, it might be hard to pick up on it. I, myself...extremely sarcastic, so I think I can find it a little easier than others. Plus you just get to know some people and know how they are.

I don't think anyone is here to intentionally offend someone else. I think if/when it does happen, it's unfortunately a minor personality clash. It happens.

Jenn...I think you'll learn to read people and go with the flow quite well in here. Just don't give up on us quite yet.

Sarah