Moved "Nonsense" thread from kids secion

[dolores a]

I really don't know what all the fuss is about here, but I totally agree that members of this forum who have had surgery have a wealth of information to share with people such as myself who are in the midst of just finding out they will need surgery, really, isn't this what the forum is for. The first spine doctor that I went to highly recommended this site, and I am so glad he did because I learned so much already. When I go to my appointment on June 26th for a 2nd opinion, I will be more informed and know what questions to ask, I will even be able to understand the terminology of it all that I learned from just reading the back and forth posts from the members who are gracious enough to stay on this site and help us through it all.

And believe me, I will back after my appointment to pick the brains of the members who have been through this surgery, and from what I have already observed, they will respond with intelligent and compassionate answers. So I hope you guys who have been there will stick around for a long time, because people like me will need you.

Thank you,
Dolores

[JoAnn5]

I'm not going anywhere either! lol...

This forum made it possible to talk to people who knew exactly what i meant when i described a problem... No one in my family could identify with it.

I still read this forum almost every day and my original surgery was 2 1/2 yrs ago. I don't think we are ever the same after this surgery though, either physically or mentally, so I still feel connected to folks here.

I've been away for a few days and on my first day back, i come here to catch up. It's disappointing to see the negativity and bickering in this post. It's also hard to trust or take seriously people who allow themselves to be pulled down to these levels.

[Pooka1]

It's also hard to trust or take seriously people who allow themselves to be pulled down to these levels.

Well I guess I have a few different concerns...

It has been brought to my attention that the person who made the inscrutable comment about folks moving on after a few years is the *SAME* person who used the word, "rubbish." An obvious quandary with no simple solution in sight.

Also, the latest results from my exhaustive spreadsheet analysis reveal that 42% of the people here are named "Susan" (or some variation), and another 48% are named "Chris" (or some variation). I don't know how folks keep this straight.

sharon

[prideinthejerse]

"Moving on"

My point about moving on is that people use this forum to ask questions before and after surgery. Obviously, for them to get info they need to have their questions answers by those what have experienced surgery. My point is that some people seem to use this forum as their chatroom, their home in a sense. They get wrapped up in a little online community of people with spinal curvatures and forget that, hopefully, the surgery has "fixed" them and they can move on with life. When I had my surgery, my focus wasn't on commiserating with other people, it was on getting back to normal. if you are "back to normal", start living in it, instead of carrying around the curvature when it is gone. I look up this forum about once a week, for 10 mins. I see if they're is anyone I can help. If not, I don't post. if there is, I do. There are some people who post on these fora a few times a day. I do not think that any one person has enough experience to be giving quality answers to questions at a rate of a few a day, and so they should move on. They should make this forum less of a focus in their life and should concentrate more on getting better and living life. Don't abandon the forum, but don't forget that you're "corrected" and that you need to start living life again.

[mariaf]

Prideinthejerse,

Thanks for clarifying what you meant. While what you said is true in some ways, I don't think that folks who post often or even daily (myself being one of them) do it because they haven't "moved on" or aren't living their lives. I live my life to the fullest but a big part of it now is sharing with others what I've learned by my experience and helping as many families as I can. More often than not, when I come on this forum or on Spinekids, I find someone with a newly diagnosed child or someone whom I can help in some way - perhaps with a doctor recommendation or pointing them in the right direction or even just listening and letting them know that I have been there.

Several years ago, when I started this journey with my son there were folks who were there for me (not on this forum because I was not a member then but folks I was put in touch with through my doctor, etc.) and now I am simply paying it forward. I"d hate to think what would happen if nobody did that.

Now this doesn't mean I'm not living my life - but for people with scoliosis, or whose kids have scoliosis, it IS a part of our lives, not our entire lives, but a part of it forever because, surgery or not, these people, or their children, still have scoliosis.

IMHO the forum is a better place because people DO stick around to share and help others.

[txmarinemom]

My point is that some people seem to use this forum as their chatroom, their home in a sense. They get wrapped up in a little online community of people with spinal curvatures and forget that, hopefully, the surgery has "fixed" them and they can move on with life. When I had my surgery, my focus wasn't on commiserating with other people, it was on getting back to normal. if you are "back to normal", start living in it, instead of carrying around the curvature when it is gone.

Pride, I'm not sure why you feel people should "move on", but here's how I see it ... (BTW, I'm living my life - I just got in from a night out when I originally posted this. I'm hardly sitting at the computer waiting to jump right on and respond to your posts - which it seems you're inferring. I can assure you Maria isn't either.)

If you've read my post-op posts (starting from the hospital the day after surgery) you won't see me "commiserating", you see me encouraging. Huge difference.

I have EVERY intention of reclaiming my life 110% asap (I'm about 95% there at only 4 months post-op), but I won't *ever* forget the people (or leave them hanging) who are discouraged by the worst of the worst stories here. They, IMHO, need someone who proves you can live life as it was (pre-instrumentation - whether that was cross-stitching or diving into bases head first). Too many here will convince newbies they're made of glass after surgery, and that is simply NOT the case.

So, no ... no matter how many times I say I'm tired of the bickering here at times - and the downers - I will be back ... even of it helps ONE person. In fact I probably get more email from lurkers who never post here (either about the surgery itself, my recovery or my surgeon). That alone demonstrates positive case examples are a good thing to have around these parts.

This board isn't just a gathering place to whine - or desert when you're "recovered". It's too bad all don't see it that way.

Pam

[lnetzer]

I haven't posted in a very long time, but I do like to come around periodically and check things out. The good people on this forum who were kind enough to give me reassurance and knowledge of what they'd gone thru before me, I honestly don't know how I would have gotten thru everything without them. Many thanks for all of those who have not moved on! You are angels to me!

[prideinthejerse]

txmarinemom and maria f

With your rapid response to my non-surgery related point, i think you've just proved my point.

Thanks

[Snoopy]

Maria and Pam,

Well said.

Pride,

Yes, my daughter is "corrected", but her experience with Kyphoscoliosis is far from over. We constantly have the threat of more surgery since she has developed Kyphosis above her fusion. Although she is 3 1/2 years post-op, she is still under the care of her surgeon. He has not discharged her.

Yes, we have moved on--my daughter is an active 16 year old who drives, works p.t, bought her own car, is involved in many clubs through school (treasurer of FCCLA last year and President for this coming year), is the Vice President of a Scoliosis Support Group (she would be President but she isn't allowed because of her age), is in the process of going to a University this summer to a Governor's School (look it up and you'll see what a priviledge it is to be going), is taking at least three college classes next year as well as her High School classes, she is doing job shadowing this summer, has already been accepted to her college of choice, planning on starting college in July of next year at the age of 17, is on the Distinquished Honor Roll (with all honors classes) every marking period, .....should I go on?

Don't tell us that we need to move on. Scoliosis is always going to be a part of our lives and if I can get the support and information I need from this forum, then I'll never leave. Jamie is not my only child. I know if my other daughter were to be diagnosed with Scoliosis or Kyphosis, this forum would be the first place I would go to for support and understanding.

Everyone moves on but like cancer, Scoliosis seems to be a part of our daily lives whether we want it to be or not.

Mary Lou

[ElleBelleCurvz]

I don't think anyone should leave this site for any reason at all, everyone deserves to speak their thoughts no matter how bizarre they are. Although I do think spammers should move on. Or not even come at all

[Pooka1]

Mary Lou,

Jamie sounds like a remarkable girl. Stories like hers are a tribute to how resilient kids are when something like scoliosis strikes and how far the surgery has come in terms of giving these kids back a normal life.

I read these testimonials and have nothing but hope for the future, both for my fused daughter and my braced one.

I don't get the comment on the speed of the responses. This is easily the SLOWEST group or forum I read. BY FAR. It seems to have the lowest number of active participants BY FAR of any group or forum I have ever subscribed to.

I wish there were more active participants and more posts in general, whether from the usual folks or new folks. I keep suspecting there are other scoliosis fora besides this one (and Spinekids) which must me jumping. But if it's out there, I can't find it.

I'm not really complaining and am forever grateful for this group.

sharon

[Pooka1]

I don't think anyone should leave this site for any reason at all, everyone deserves to speak their thoughts no matter how bizarre they are. Although I do think spammers should move on. Or not even come at all

If we had a post of the month contest, I would nominate this one.

"... everyone deserves to speak their thoughts no matter how bizarre they are."



sharon

[txmarinemom]

If we had a post of the month contest, I would nominate this one.

I'd nominate it for "spammers should move on"! - LOL. Danielle, it looks like you're batting 1000 today, kiddo .

Regards,
Pam

[Pooka1]

That one is great also.

I just love it when even a 14 yo can have a good sense of the bizarre. Just love it. Gives me hope for the future.

sharon

[ElleBelleCurvz]

Haha Thanks Sharon and Pam.