31 replies to this topic

[Lucydog]

Does anyone regularly use CareCure forums? What do you think of it? Can I be honest? Well I will, maybe its because Im english but I just dont get it. I dont undertand the culteral references, I find the medical advice at odds to what seems to be the norm in Britain, the SCI nurses patronising and the members seem to be rude, bitchy and unpleasant. Ive posted a couple of times but dont bother anymore as the attitude seems poor and unless you are in with the in crowd there, no one makes much effort to welcome you.

God forbid anyone might have a different opinion as a lot of the members there seem to think they have been there, done that and have the shirt as well and what they think is final.

So am I complaining, not particularly, I was just wondering if it was me being overly sensitive, cos I am at the moment, if other people know where Im coming from or maybe Im totally 'out of step' here!

Im not meaning to criticise, its just a perception I have of the site and wonder if others have found this as well.

cheers
L

[In The Wind]

I do. Yes, they are a snobish, clique-ish bunch. And yes the nurses can be f**kheads, but there are some good folks over there.

The advise is probably top-notch, I hadn't really seen any differences but I don't dig around too much there..

They do tolerate a bunch of non-sci related political bs that seems to consume a bunch of thier time though..

[kewlcatkez]

Lucydog, on Nov 15 2007, 08:23 PM, said:

Does anyone regularly use CareCure forums? What do you think of it? Can I be honest? Well I will, maybe its because Im english but I just dont get it. I dont undertand the culteral references, I find the medical advice at odds to what seems to be the norm in Britain, the SCI nurses patronising and the members seem to be rude, bitchy and unpleasant. Ive posted a couple of times but dont bother anymore as the attitude seems poor and unless you are in with the in crowd there, no one makes much effort to welcome you.

God forbid anyone might have a different opinion as a lot of the members there seem to think they have been there, done that and have the shirt as well and what they think is final.

So am I complaining, not particularly, I was just wondering if it was me being overly sensitive, cos I am at the moment, if other people know where Im coming from or maybe Im totally 'out of step' here!

Im not meaning to criticise, its just a perception I have of the site and wonder if others have found this as well.

cheers
L

Hi Lucydog,

I do pretty much agree with you about CC. I have posted there a handful of times ( under the name Serendipity, I also have posted at NewMobility and still do at PQ under that alt too). I certainly agree about the clicky type of feeling that I get when posting at CC. It seems to be a bit like Highschool - if your face fits then you are ok! lol, to be honest maybe it is because I am not a 'gunho' cure-ite why I have trouble getting on there! Don't get me wrong, someone curing me would be fab, but I am not spending every waking minute and every breath obsessing about it.

Also, the information does somewhat contradict a lot of what I have been both Taught ( professionally as a nurse) and told as a patient. ( I do keep updated and am still registered as a RN altho not working in that capacity now). In fact i have even had erm.."heated discussions" with a Nurse on Newmobility before now..
I think that some of the contradictions are due to the fact that some things are a case of trial and error and practice is based upon evidence and studies and this naturally causes many contradictions anyway. The seemingly "sanctimonious" attitudes can get a bit annoying when some of the time its like "teaching Grandma how to suck eggs". hat I mean is that as a Nurse I was always taught that the "experts" were often those who lived with the condition/state/situation.

Bottom line is that sometimes when you are the 'new' person about it can take a while to settle in and for people to start 'talking' to you and -perhaps its harder there because its seems such a huge site. Incidently, I know of a few people who love CC ( both from the UK and US) so its horse for courses I suppose.

Take care,
Newbie K, lol

[adi chicago]

hehe guys ...dont you love my posts on cc?is a great site.this one as well.we need info and help.sci sucks.all the best guys.

[lune14]

Lucy,

I got the same impression as you and as a result stopped posting there. There were a few people who were warm but oddly I found the UK folks that I dealt with personally, the ones who were short/snobbish to me. I didn't stick around long enough to compare US/UK health information but I believe you are right there as well... a lot of it is conflicting and that does get confusing. It is a large site by comparison to here too and I prefer a smaller community myself. As well I get a lot from your posts in particular and appreciate your candor here.

[Apparelyzed]

I'm a member of CC, and find it ok, but I mainly lurk.

I think with such a large number of members, the strongest personalities will show, and they can seem a bit opinionated, but on the whole, I think it's a very informative place.

I think you will get clashes of personality on every forum, even here, but as long as it remains civilised, and it results in helping people, then I don't have a problem.

Regards

Simon

[RacingAxe]

I post mainly here and Care Cure. I do believe this is a more personal site while CC tends to be more clinical. People like Adi Chicago do help to take the hard edge off over there.

[kenf]

i been there for over 2 1/2 years , with alot of posts. i still feel like an outsider. i know what you are saying about the "in crowd". i go for the jokes and read Adi's posts.

[KimAndSophie]

I went there before I even knew about this site, but found the people there to be opinionated to the point of almost ripping the heads off of the people they disagree with. There seemed to be nothing but fighting and bickering going on, and if you weren't one of the "in crowed" then you were a no-body. That's when I found this site, and realized that it is the best by far. People here treat you with respect and if they disagree they don't treat you like you like crap. I'd prefer the calmness of this board over the heated discussions over there any day. Especially the putting down anyone who isn't so "up with" the whole Christopher Reeve/cure thing that seems to happen there.

[russ1]

I've been mainly lurking over there for years, post very occassionally but like others find it quite a difficult place to warm to. I think it's just the US in your face Vs the UK reserve thing. However it is a great place for in depth technical stuff whether it's equipment or medical although again I've found there are marked differences between US medical advice and UK advice which makes it difficult to take on board as it's often presented in a 'this is the right way and the only way' manner when it clearly is contradicory to medical advice being given in spinal centres in the UK.

[smokymtn memories]

I post on CC, too. I've been pretty lucky and met some nice folks, but as Simon has said, it is much larger and harder to get to know everyone.

I've learned, by reading, which ones are the most controversial and to just not try to converse when anything is going on with them involved. Like, stay out of the Politics forum, just a couple of them seem to ruin it for anyone else.

It's always fun to read what Adi is up to and thinking about.

[sjean423]

I am over at cc a lot. I do tend to stay out of the politics forum .... always a hot spot, but the other forums are usually pretty friendly. It IS big, so I don't think new members are specifically welcomed often. (Not saying that they are NOT welcome, trying to say that it isn;t always noticed that you are new, and then "Hi welcome to the site".) As far as rude posters, yea, there are a few that come to mind, but mostly I tend to ignore them, although I must admit to occasionally being dragged in.

I find it very helpful for medical advice, and questions about w/chairs and such.

Since I am American, I obviously don;t know what the medical norm is over here .... I was curious as to what you have found to be different?

Edited by sjean423, 24 November 2007 - 09:38 PM.

[nomis]

I'm not much familiar with the Carecure forum. When I checked it out some time back I thought it jumbled and it'd take a lot of time sifting through posts to find anything relevant for me. So I gratefully ended up here.

I've just checked Carecure again and confirmed my earlier impressions. It is large and obviously fulfils an important role. But its prissy ban on sexual content denies a major concern of SCI and that is seriously regrettable.

I think Carecure illustrates just how good Apparelyzed is organised. But let's keep it our secret because if everyone comes to join us we'll end up being over crowded.

[WilliamCraig]

I just joined there a couple of days ago. Yes, there are definitely separate groups there, but I'm finding out it's a great place for intellectual discussion...

Though, I may already be in trouble there lol I gave a parody in regards to reincarnation that the minds of Eastern philosophy aren't taking kindly to. Still fun, though.

[nomis]

Yep, I saw your little stir on the reincarnation thread. You better hide here for a day or two.

[Lucky]

I've been using it for 4 yrs or so.

Good for 'Cure' info and pain info too.

[Millard]

I use several different forums and get good points from several of these. Many people are still adjusting to their new bodies and have "bad days" because of this. I went through the same thing. Just be patient.

[WilliamCraig]

Quote

Yep, I saw your little stir on the reincarnation thread. You better hide here for a day or two.

I think I've rallied the skeptic group around me lol

CareCure is an interesting place... sort of like a camping ground where gang wars are going on behind the scenes at certain sections.

[darrel]

I've been posting over there for about the same amount of time as here.. I mostly post and reply in the care threads on baclofen pumps and have learned alot from both sights..since I have had mine put in I have learned more from personal experiences than from any thing else..and I have to thank those that have been informative on this issue..I kid with some of them and they kid back..it is wise to stay away from the political and religious threads due to the controversy..and there are a couple that want to argue no matter what the thread is, they just have rectal vision..

[keps]

Lucydog, on Nov 15 2007, 09:23 PM, said:

Does anyone regularly use CareCure forums? What do you think of it? Can I be honest? Well I will, maybe its because Im english but I just dont get it. I dont undertand the culteral references, I find the medical advice at odds to what seems to be the norm in Britain, the SCI nurses patronising and the members seem to be rude, bitchy and unpleasant. Ive posted a couple of times but dont bother anymore as the attitude seems poor and unless you are in with the in crowd there, no one makes much effort to welcome you.

God forbid anyone might have a different opinion as a lot of the members there seem to think they have been there, done that and have the shirt as well and what they think is final.

So am I complaining, not particularly, I was just wondering if it was me being overly sensitive, cos I am at the moment, if other people know where Im coming from or maybe Im totally 'out of step' here!

Im not meaning to criticise, its just a perception I have of the site and wonder if others have found this as well.

cheers
L

Hello Lucy!

I haven't posted on here for a long time. That's because I felt like I didn't fit in here, whereas I do feel "accepted" over at CareCure.
It's just one of those things.

I did see the posts you made over at CC, and to be honest, I wasn't sure what to make of them.
Like I saw you specifically addressing one or two people, instead of inviting chat with anyone.
That immediately puts me off addressing a newcomer. But a "hello everyone, I'm new!" - is a good place to start.
And asking questions, then not responding to the folk who reply? A no-no.
I'm not being arsey, just giving my opinion.

Edited by keps, 26 November 2007 - 11:32 PM.

[Lucydog]

The reason I dont reply is I feel as if my opinion deviates from the mass them Im likely to get personally ripped apart. I can think of countless discussions Ive read where people have been verbally assasinated in what seemes like very innocuous circumstances. An instance? What about the student who was asking for info for her school magazine. At least 7 or 8 people waded in and poked fun at her english and grammar mistakes? Why do that? Arsey thats why. Thats a No - no as far as Im concerned, decency and politeness cost nothing.

I hve no idea what you mean about my postings..... Ive only ever made 9 so how can you judge me? Ive asked 1 question, made a few comments about Israel, and offered some advice about pregnancy? Whats not to think about those? I didnt know we had to make formal introductions, there doesnt seem to be anywhere to do that.

yYs its a good site for info and I read it a lot, but you may be surprised to know that actually I live in the middle of nowhere, dont speak to people from one week to the next and actually look for a few kind words from people which seem rather lacking on CareCure.There always seems to be some sort of fight going on between some people. Sorry I wont bother again.

Edited by Lucydog, 27 November 2007 - 12:45 AM.

[kewlcatkez]

keps, on Nov 26 2007, 11:31 PM, said:

Lucydog, on Nov 15 2007, 09:23 PM, said:

Does anyone regularly use CareCure forums? What do you think of it? Can I be honest? Well I will, maybe its because Im english but I just dont get it. I dont undertand the culteral references, I find the medical advice at odds to what seems to be the norm in Britain, the SCI nurses patronising and the members seem to be rude, bitchy and unpleasant. Ive posted a couple of times but dont bother anymore as the attitude seems poor and unless you are in with the in crowd there, no one makes much effort to welcome you.

God forbid anyone might have a different opinion as a lot of the members there seem to think they have been there, done that and have the shirt as well and what they think is final.

So am I complaining, not particularly, I was just wondering if it was me being overly sensitive, cos I am at the moment, if other people know where Im coming from or maybe Im totally 'out of step' here!

Im not meaning to criticise, its just a perception I have of the site and wonder if others have found this as well.

cheers
L

Hello Lucy!

I haven't posted on here for a long time. That's because I felt like I didn't fit in here, whereas I do feel "accepted" over at CareCure.
It's just one of those things.

Hi Keps,

good to see you again! I hope that you are well. Mm I do have a differing opinion about CC than you do, but like I said in my post, I know folks who love it there ( YOU!! lol) and folks who don't! I suppose thats why there is room for all the sites. I bob in at a few but I do still find fitting in hard at CC..then again I haven't posted for ages so maybe I should periodically, just for scientific purposes LOL..
Anyway, I hope that you and your b/f are well. ~Catch ya tomorrow.

Take care,

K

[sjean423]

LucyD,

You had mentioned that the typical medical advice differs as far as US/UK? I was curious about that. (Obviously) I am only familiar with typical US advice. I have noticed that re-using isn't standard advice over her, but are there some others? (Luckily, my insurance covers a new cath every time, but a lot don;t.)

ps. I enjoy reading your blog, btw.

oh and Darrel is sure right about the fighting in the religious threads! I had mentioned politics, but neglected to mention religion!

[keps]

Lucydog, on Nov 26 2007, 11:57 PM, said:

The reason I dont reply is I feel as if my opinion deviates from the mass them Im likely to get personally ripped apart. I can think of countless discussions Ive read where people have been verbally assasinated in what seemes like very innocuous circumstances. An instance? What about the student who was asking for info for her school magazine. At least 7 or 8 people waded in and poked fun at her english and grammar mistakes? Why do that? Arsey thats why. Thats a No - no as far as Im concerned, decency and politeness cost nothing.

I hve no idea what you mean about my postings..... Ive only ever made 9 so how can you judge me? Ive asked 1 question, made a few comments about Israel, and offered some advice about pregnancy? Whats not to think about those? I didnt know we had to make formal introductions, there doesnt seem to be anywhere to do that.

yYs its a good site for info and I read it a lot, but you may be surprised to know that actually I live in the middle of nowhere, dont speak to people from one week to the next and actually look for a few kind words from people which seem rather lacking on CareCure.There always seems to be some sort of fight going on between some people. Sorry I wont bother again.

Hey, I'm not out to put you down. Just giving my take on things.

I can't think of the student - perhaps I missed that thread? Is it possible the others were just joking with the student?

Yes you have asked questions - then not thanked people for bothering to reply! Sorry, but that's a bit rude!
And even in this thread, you have responded to my post alone (as it has naturally bothered you), and then not bothered to make any reference to anyone else's contribution to a thread YOU started!
And sjean has specifically asked you questions, which you have thus far ignored! Whilst replying to my post which came AFTER sjeans!

kewlcatkez, on Nov 27 2007, 12:18 AM, said:

Hi Keps,

good to see you again! I hope that you are well. Mm I do have a differing opinion about CC than you do, but like I said in my post, I know folks who love it there ( YOU!! lol) and folks who don't! I suppose thats why there is room for all the sites. I bob in at a few but I do still find fitting in hard at CC..then again I haven't posted for ages so maybe I should periodically, just for scientific purposes LOL..
Anyway, I hope that you and your b/f are well. ~Catch ya tomorrow.

Take care,

K

Hello, you! Well, it's only to be expected that some people get on better at some boards than others...depends whether the people are ones you like, and feel happy being around.
Kez, you had a fab welcome thread - lots of folk welcoming you. But then you buggered off, lol,

I know you were on NM, and I felt the way about that board, that others seem to about CC. Do you still post there?

Edited by keps, 27 November 2007 - 02:48 PM.

[Lucydog]

Why is this becoming personal? The question was about peoples perception of CareCure, Im not the only one with this opinion, that doesnt mean it doesnt do good because it does. The subject matter was not about me, it was directly about the threads, replies and behaviour Ive read on the CareCure forum as I thought I was being oversensitive, Im obviously not.

Edited by Lucydog, 27 November 2007 - 04:19 PM.

[kewlcatkez]

keps, on Nov 27 2007, 02:47 PM, said:

Hello, you! Well, it's only to be expected that some people get on better at some boards than others...depends whether the people are ones you like, and feel happy being around.
Kez, you had a fab welcome thread - lots of folk welcoming you. But then you buggered off, lol,

I know you were on NM, and I felt the way about that board, that others seem to about CC. Do you still post there?

Hi "Keps",

You are right, there are so many different personalities in the world that it can be hard to find one site to please everyone! Yes, I did get a great welcome and those people who welcomed me were great. My problem is that the "nurses" and a few sort of totally opinionated folks and I have had differences of opinion in the past and I can't help but comment about stuff and well it makes my blood pressure go up! Also I just feel that the site is tooo big, it feel some how impersonal.

I used to feel ok at NM and thats surprising as it has had its fair share of 'fights'. I think the difference is that it somehow used to be less technical in the way its set out too and I just felt like one of billions on CC but not on NM..I say used to b/c the NM site is not like it used to be design wise.. there were good people there too ( as there re at CC ). The way it differed to CC is that it was smaller and so didn't feel so spread out and all that. No, I don't post there anymore but I do post at a site which some of the members of NM post on too.

Ultimately b/c I have EDS and my spinal "dysfunction" if you like is largely caused by it, I often feel like I don;t fit in anywhere. I scare the EDS sites ( LOL) and I sometimes feel like "the fringe" of the SC I site world..

Ok, so thats enough from me! Really good to hear from you hon,

Catch ya later,

Take care,

K

xox

Edited by kewlcatkez, 27 November 2007 - 05:40 PM.

[keps]

kewlcatkez, on Nov 27 2007, 05:37 PM, said:

Hi "Keps",

You are right, there are so many different personalities in the world that it can be hard to find one site to please everyone! Yes, I did get a great welcome and those people who welcomed me were great. My problem is that the "nurses" and a few sort of totally opinionated folks and I have had differences of opinion in the past and I can't help but comment about stuff and well it makes my blood pressure go up! Also I just feel that the site is tooo big, it feel some how impersonal.

I used to feel ok at NM and thats surprising as it has had its fair share of 'fights'. I think the difference is that it somehow used to be less technical in the way its set out too and I just felt like one of billions on CC but not on NM..I say used to b/c the NM site is not like it used to be design wise.. there were good people there too ( as there re at CC ). The way it differed to CC is that it was smaller and so didn't feel so spread out and all that. No, I don't post there anymore but I do post at a site which some of the members of NM post on too.

Ultimately b/c I have EDS and my spinal "dysfunction" if you like is largely caused by it, I often feel like I don;t fit in anywhere. I scare the EDS sites ( LOL) and I sometimes feel like "the fringe" of the SC I site world..

Ok, so thats enough from me! Really good to hear from you hon,

Catch ya later,

Take care,

K

xox

kewlcatkez - oh yeah, there are some people on CC who I loathe. I just have nothing to do with them, though. These people don't tend to be fans of me either, so it works out fine, lol.
As others have mentioned, there some heated, nasty stuff that goes on - especially in the politics section. I never post there though, and keep well away from fighting.

I found NM too much - more nastiness than at CC, it seemed to me. Didn't NM become a moderated board eventually?

[sjean423]

I think a lot of it just comes down to familiarity. We post where we are comfortable, and we are comfortable b/c we a familiar with the people, so we post more, etc ... its self perpetuating. Then we know which ones we want to avoid, and who to ignore! As it's a larger board, there are just more crazys there than here!

This board (Apparelyzed) is actually the first message board I found after I got hurt. I didn;t even know they existed before that. So a big Thank You to Simon!

Edited by sjean423, 28 November 2007 - 01:05 AM.

[dom]

hi lucy, itried carecure a long time ago but its a big site and cliquey too i don't really care if i get argumentative replies [it sometimes spices my time up:)] i will try again but as we know not all sites are suited to our tastes-stick with what you enjoy,taraaa

[dan_nc]

Apparelyzed was the first site I found when I was injured (thank you, Simon). Just wanted to say hello to all of you friends on the other side of the pond.