Where did all the AS kickers go? :)

Posted by: Didier

Where did all the AS kickers go? :) - 05/17/19 08:06 AM

When I was posting regularly in 2011-2012 this forum was quite active. Any ideas why the activity seems to have died down now? Is there a different place online where those afflicted with AS discuss topics?
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 05/19/19 11:10 AM

Hello Didier,

Yes it is now slower... unsure of the reasons, but I also check in less often, but trying to come back more often.

This is a great place that changed my life and will be forever thankful for the support and knowledge gained here.

Keep on kicking!

Tim
Posted by: jroc

Re: Where did all the AS kickers go? :) - 05/20/19 04:37 AM

There was a similar discussion recently on the decline in forum participation on the SAA forum - http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=282860#Post282860

One of the reasons is likely Facebook groups. There are two main AS Facebook groups, one with 27k members and the other 19k.
Posted by: tvmanjon

Re: Where did all the AS kickers go? :) - 05/20/19 09:55 PM

KickAS is unmatched in the depth of information and format. I have directed members of the facebook group here. This forum is much better for serious solution finding..
Posted by: EricaK

Re: Where did all the AS kickers go? :) - 05/27/19 02:39 PM

I've been less active for the past 3 years since I went back to school and was in a good remission. I'm still in school. Peace, Erica
Posted by: Kellybells

Re: Where did all the AS kickers go? :) - 06/01/19 09:20 AM

I dont think it helps that in the NSD forum new posters are often greeted by posts telling them the starch-free diet is just 'witchcraft and mumbo jumbo'.

This was the greeting I got, and it was a horrible welcome to what I had hoped would be an encouraging and supportive community. Those kinds of posts surely discourage new posters from sticking around. They also violate the forum's osting guidelines, but mods do nothing. I eventually get annoyed by the lack of action (any other forum would have banned such posters long ago) and leave the site for long periods to go fight this battle on my own.
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 06/05/19 07:20 AM

Hello Kelly,

Many, many years ago there was not a separate diet forum, that created a lot of heated exchanges regarding diet issue.

The diet forum was created to reduce those types of exchanges... it helped to reduce, but it cannot eliminate entirely.

Hopefully you have found the encouragement you need, I have been on the diet since 2002 with very good results and know many others with similar experiences. On the other hand, know several for whom the diet has not worked.

Hope everyone that comes to Kickas finds the solutions they need.

Regards,

Tim
Posted by: LINCinNYC

Re: Where did all the AS kickers go? :) - 06/11/19 03:02 PM

I’m still here! Since late 90s. But I do check in less often now. However KA was and is a lifesaver for me!! And these forums have great info and discussions. Many of our old guard who were here every day have passed away, and I miss them.
Remember, you all rock, keep your hopes up and keep Kicking!!
Peace
Linc
Posted by: Sassy

Re: Where did all the AS kickers go? :) - 06/11/19 06:42 PM

I pop in on occasion. It has been a few years though. I keep up with a lot of kickers on Facebook or in real life.

It has been almost 20 years since I found you guys. Place really was hopping back then. We had so much fun on here and the many, many gatherings that Eric and myself attended.
Posted by: Oldtimer

Re: Where did all the AS kickers go? :) - 06/11/19 07:19 PM

Still kicking, don't look in very often. Don't see many of the names from way back. JR
Posted by: mulehound

Re: Where did all the AS kickers go? :) - 07/07/19 10:28 AM

Always look in just don't post much.
ETTE
Darrel
Posted by: MollyC1i

Re: Where did all the AS kickers go? :) - 07/08/19 03:35 AM

Hi Didier - Well, I still post from time to time. I also recommend, especially when it is a dietary matter - NSD/LSD and to check on 'inflammatory foods' and 'anti-inflammatory foods'. I know of several people who took up membership of KA.
Yes. I also miss the old crowd - Kat; Loz and Strutsy; Manatee; Mig; Alan and so many others. It was always very lively - still chuckle over the 'shed' making its transatlantic world tour <LOL>
Yep. Love KA. Best support group and excellent for information. Good discussions.
There are f/b groups, but do not begin to compare to KA.
La Moll - Keeping on, Keeping on - as we all do innit smile
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 07/11/19 08:55 PM

Hello Molly,

Good to see you dropping in and posting... we are both closing in on 10k posts grin

If we can get there, we would be in rare company... Sue, Kat and Mig.

Keep on kicking.

Tim
Posted by: MollyC1i

Re: Where did all the AS kickers go? :) - 07/12/19 03:49 AM

Morning Tim - Good to see ya. You need to put up a new pic of yr son...he must be a teenager now, or early 20s ?
10K posts. Lordy, still, is over n'number of years !
There hasn't been that much in the medical news re AS, in any of the aspects. Though was pleased to see the MRI being admitted to be 'gold standard' screening. That was a definite win smile
Hope you and yr family are continuing well. Me ? Stagger on <G>
Molly C - Keeping on, Keeping on - as we all do
Posted by: MollyC1i

Re: Where did all the AS kickers go? :) - 07/12/19 04:57 PM

Oops - Mateo is 11 yrs old ? I must have moved here to France within months of his birth...yet seems way before I relocated. Not a teen yet, but not too far off. Good for a laugh smile
Posted by: Bry4

Re: Where did all the AS kickers go? :) - 07/12/19 06:33 PM

I always read just never post.
Posted by: Megan

Re: Where did all the AS kickers go? :) - 07/12/19 07:43 PM

I’m guilty of not checking in here very often. I’m still kickin though smile Busy working and being a caregiver these days.
Tim - is Mateo really 11?? Oh my gosh, time flies when you’re having fun lol
Hope everyone is doing well. I’ll do my best to check in more often!
And yes, I too think it’s facebook groups that are the reason forums like this are used less frequently.
Posted by: sherri

Re: Where did all the AS kickers go? :) - 07/12/19 09:28 PM

This is my first time back in years !!
There are a lot of AS groups on Facebook maybe that is where they go.

Sherri
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 07/15/19 07:36 AM

Hello Molly,

Yes.. Mateo is now 11. In a couple of weeks flying to States to visit grandma (my mom)... so he is excited for the trip.

Tim
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 07/15/19 07:38 AM

Hello Megan,

So great to see you checking in, hope you are doing well.

Caregiver is for your work or personal (son/daugher/parents)?

Keep on kicking!

Tim
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 07/15/19 07:40 AM

Hello Sherri,

Not only I need to update my photo of Mateo.. assume you need to update your pic of your children as well grin

Hope all is well.

Tim
Posted by: MollyC1i

Re: Where did all the AS kickers go? :) - 07/15/19 09:22 AM

It will be a fab trip Tim - Best to young Mateo - photos is poss...but might not want to put children's pics out on the internet! Must say I also would be chary!
Posted by: ineptwill

Re: Where did all the AS kickers go? :) - 08/08/19 03:55 AM

Cripes, I best check in then...cripes....errr, yes who am I, I forget sometimes! I am Alan the great, Molly yes, you tried to run off in my shed
!
I Spoke to my old sparring partner Mig, a week or two ago, lovely as ever.

As for never being here, well you see I decided to do a degree; thinking an hour or so a week would cover it - wrong!

In my defence may I say that I do pop in and read here quite often and shall try even more so in light of this gentle admonishment.

Question from my degree exam: Search the Mendelsohn violin concerto and name the bar (about 6 million to chose from)which contains a chromatic appoggiatura...Cripes.

Lovely to post here again

Alan
Posted by: lilkitty

Re: Where did all the AS kickers go? :) - 08/09/19 10:47 PM

I still peek in from time to time. It's been well over 20 years since I started coming to KA.
Posted by: Sue22

Re: Where did all the AS kickers go? :) - 08/12/19 08:34 PM

Yeh, I'm on a Facebook group, that is part of it.

But also, when I was finally put on Humira, it changed my life so much, that I got back to living my life, in a way I really couldn't before. So, less time on forums (or FB) and more time living.

But I did appreciate the helpful ideas like going to another city in another state to get diagnosed, that was the key that opened the door to getting the humira and getting some of my life back.

Yes, I still flare, but not nearly as often badly as I did before the humira. Only need steroids once or twice a year now. The only real problem is the permanent damage in my neck and SI due to the years of uncontrolled inflammation. The neck makes it so sitting is a real challenge..still looking for a new car I can sit in. The SI makes it so I can't go swimming anymore, but that's about it for that...it's really only a big problem when I flares about once a year now.

So, if you are having trouble getting a diagnosis and treatment, persist, so it can be managed as soon as possible...those years of uncontrolled inflammation can really do damage to the joints. And don't let anyone make you second guess yourself. I was fortunate to have doctors and PTs and a chiro who saw the inflammation, and stood behind me in finding a rheumy to dx and rx me.

Every so often, I do stop by to see what is going on.

HI! smile
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 08/14/19 07:17 AM

Nice to see Alan, Kitty and Sue dropping in.

Tim
Posted by: stevec

Re: Where did all the AS kickers go? :) - 08/14/19 10:27 AM

Like most of the others, I check in periodically but don't post so much.

Life gets busy AS or not. My girls are now on their way to being sriors on high school. Am trying to survive putting triplets through college in the next four years

Had an awful car accident last year broke my neck but miraculously after 3 brutal months am only a little more bent.

Weeks later my wife, the lovely Diane, had her fingertip chopped off by a malfunctioning hotel room door

Somehow we are both still kickin'
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 08/16/19 10:46 AM

Hello Steve,

Good to see you checking in.. sorry to hear about the accident and finger tip incident.. but good to know still kicking.

On recent trip to States, we stopped at planetarium near my mom´s to view Saturn and Jupiter. It is at 2 year university (extension)... they had comparison of tuition prices for several universities within Wisconsin and could not believe the costs shocked

Tim
Posted by: pat5star

Re: Where did all the AS kickers go? :) - 09/08/19 12:34 AM

Same story with me. Pop in once in awhile to read some stuff and to see if anything new is going on research wise. Can’t even remember last time I posted tho (but may start a new topic today because of a new twist/challenge presented to me thanks to AS).

I still VERY much appreciate this site and so glad I found it all those many years ago! Whenever I’ve encountered others with AS I have (and still) highly recommended this site to them. It’s always been a fantastic resource and it’s my goto site for all things AS related.
Posted by: rumble

Re: Where did all the AS kickers go? :) - 09/19/19 12:16 AM

Time constraints keep me from checking in here as often as before. Stability in the disease has been a part of that, too. Had to take about 2 yrs off biologic due to a combination of problems (pneumonia, followed by a couple of persistent lung nodules which had to be worked up and followed for 2 yrs. Then broke my foot in 5 places when I fainted during a trip to the potty in the middle of the night. That took over a year to heal, including use of a bone-growth stimulator.) Those 2 yrs were miserable, given I was back on essentially no treatment but MTX and I was progressed in severity from when I first began treatments. But after that 2 yrs was finally up, got back on the usual treatments again and things are back to as stable as is possible. Still working full time, but looking forward to retiring in about 3 yrs when I make 65. With any luck, I might be able to cut hours back to 32/week and still keep benefits in the last year. While it might not be as active as it was in the days when I joined up, there are good people here sharing great information as to how they are slaying the beast. Keep on kicking, all of you.
Posted by: Cindy

Re: Where did all the AS kickers go? :) - 10/04/19 11:03 PM

I have not been on here in years. Maybe it's because I've grown my own support group with my sister and 3 of my children fighting this battle. I still send new people this way.
Posted by: MollyC1i

Re: Where did all the AS kickers go? :) - 10/05/19 08:16 AM

Cindy - good to see you here. Good to have your own home-based support group, well done family. Take care, continue well -

I continue to dig out your Pelvic Floor Exercises for people - still called for smile yes
Molly C - Keeping on, Keeping on, as we all do
Posted by: hawkman

Re: Where did all the AS kickers go? :) - 10/07/19 09:56 PM

Been a while since I logged in the forum . I see some names I know from about the turn of the century laugh ! The NSD has really been good for me , so I don't come by like I should . I will try to stop by more often .
Posted by: Orch

Re: Where did all the AS kickers go? :) - 10/14/19 06:06 PM

I have not looked here in a long time. About a year ago my AS went into remission. Not sure if it was the less strict not to much starch diet I was on or the MS medications I take. The sad news is that my oldest son was diagnosed with AS. So the AS is not bothering causing me problems now. If the MS would only fade out the same way.
Posted by: MollyC1i

Re: Where did all the AS kickers go? :) - 10/15/19 05:41 PM

Orch good to see you though sorry to learn that yr son has a recent diagnosis for AS. Darn this disease. At least he has you to guide him.

Oddly, you were right on the ball - was about to ask about any spondys with a + Dx of MS! I threw a major wobbly the other week and an MRI showed what is a very 'probable' Dx os MS. Am nonplussed. From where did this spring ? So was going to ask 'how many spondys here with such a dx ?' I know that the two can be bedfellows !
Orch - was yr MS triggered by biologics ?
Trying to find a trigger point on this, though was never on the bios myself.
Any info useful - my thanks-
Molly C - Keeping on,Keeping on- as we all do smile
Posted by: jackson

Re: Where did all the AS kickers go? :) - 10/16/19 10:03 AM

Originally Posted By Orch
I have not looked here in a long time. About a year ago my AS went into remission.


That’s great. How is remission determined?
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 10/19/19 09:13 PM

Hello Orch,

Sorry to hear your son is suffering, hopefully he can follow you into remission for the AS.

Are you still running?

Seems like forever ago now that we met in Vegas.

Best to you

Tim
Posted by: mulehound

Re: Where did all the AS kickers go? :) - 11/12/19 09:01 PM

I still keep tabs on this place saved my life. Great people here.
ETTE
Darrel
Posted by: mooman

Re: Where did all the AS kickers go? :) - 01/19/20 07:09 PM

haha, more drugs, more experience and many many more groups is my guess. Has become a lot easier to find information smile ...a good thing.
Posted by: meggala

Re: Where did all the AS kickers go? :) - 01/21/20 12:48 AM

havent been here for years was OG from when it first started a long dark time ago 20+ years glad to see its still here and the resource is great i had great remission for 10-15 years worked etc started getting the really bad fatigue and pain around 2 years ago first time back here in maybe 5-10 years and my old password worked yay. keep up the good work yes lots on face book but this is a great resource. i suppose we are old and wiser now.
cheers
meggala
Posted by: Leanne

Re: Where did all the AS kickers go? :) - 01/21/20 09:46 AM

I think maybe because of the facebook low starch group. I get posts everyday from them.
Posted by: Orch

Re: Where did all the AS kickers go? :) - 02/06/20 05:12 PM

Tim, I am just starting to run again. The MS gave me drop foot so I would trip over my feet when I was running. I had some orthopedic braces made that hold my feet up while running. The problem is the weather has been so bad here that I have not been able to do much running. How is Rosario? My neighbor is from Rosario, but has lived in Utah for 30 something years. Hope your family is doing well.

Steve
Posted by: Dotyisle

Re: Where did all the AS kickers go? :) - 02/08/20 04:09 PM

Wow... small word Orch, ask him if he is Newells or Central (2 big soccer teams in the city).

Glad to hear you can run again, I am walking almost every day and stretching. We are having hot and humid February... December was cooler than last several years, but now Feb is hammering us.

Best,

Tim
Posted by: snowshoe

Re: Where did all the AS kickers go? :) - 02/12/20 04:21 PM

Still here, just not checking in (and not on Facebook either). Saying hi to all and special thanks to Dragonslayer and Admins for their dedication to keeping this site available as a resource to all.
Posted by: Kearly

Re: Where did all the AS kickers go? :) - 02/20/20 05:29 PM

Hello fellow askickers.

I’ve been gone for quite a few years and glad to be back.

I’ve added Crohn’s to my diagnosis and am now on weekly Humira.

I look forward to catching up with all of you.
Posted by: FormerFoodie

Re: Where did all the AS kickers go? :) - 03/20/20 09:02 PM

I rarely check the forums anymore. In 2009, the information on these forums really changed my life and the course of the disease. Since then I've pretty much been able to manage an asymptomatic life as long as I adhere to a certain lifestyle (I'm not cured). I'm sad that not as many people participate because I believe sharing our experiences can be very powerful and helpful. I know I'm very grateful for the people who have shared their experiences on this forum.
Posted by: DragonSlayer

Re: Where did all the AS kickers go? :) - 03/21/20 11:06 PM

Thank You, snowshoe:

Will be here as long as possible! Thanks to our donors and especially Timo!

HEALTH

John