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Dealing with it all

dilaurodilauro ConnecticutPosts: 9,839
edited 06/11/2012 - 8:45 AM in Spine-Health Announcements
There have been so many threads/posts made regarding how to deal with the pain, the doctors, the tests, the medications, etc.

Some times it gets all jumbled up and hard to distinguish between facts and feelings.

There have been many members on this site that have been straight forward, up front and to the point. And then we have others that like to sooth members with hugs, loves and kisses. I am not saying one is right or one is wrong.

Different people respond to different stimulus.

One point I would like to make is with those members who are point blank and tell it like it is. One comes to mind so often. Terror3896, Jon. He has been a chronic pain patient for many years and he has been a solid Spine-Health member.

Jon, tells it like it is. He doesn't sugar coat things, he is very direct and tries to explain things as they really are.

Many people appreciate that, and others balked at it. They don't like hearing someone that is to the point and is black and white. I've been dealing with pain for so many years and have been to so many doctors, therapists, etc, that I appreciate nothing more than the plain old truth. Nothing sugar coated. I believe that Jon is in that same place.

I respect and admire Jon, not only for how he deals with his pain, but because the way he communicates. He will not bend, because someone doesn't like his tone.

I am in a special situation. I am the Administrator for Spine-Health, and as such it is my obligation to make sure that all posts and information abide by forum rules and that no member is chastised.

But I am also a member, a chronic pain sufferer. So, many times I post as a member and at times I post as an Admin. Can you all tell the difference? Maybe not.

I encourage anyone that has different views about what I post to speak up, explain your feelings. I welcome anyone that has a different point of view. On the same token, I will stand firm when it comes to anyone that violates any forum rules.

The purpose of this post? Its really to say that there are so many of us out there, so many different views. We don't always have to agree, but please even when we disagree, respect what the other person is saying.

So many times I have read a post that drives me crazy because what the person is saying. Do I slam them? Do I call them out on the carpet? No, Everyone has the same right to speak what is on their mind and view their opinions. I will never object to that. Its only when anyone takes it a step further and tries to hurt another individual, is where I draw the line.

I love Spine-Health. I have been here for over 3 years now. It has helped me through the darkest of times. It has helped me spawn a new web site, it has helped me develop new friends and new insight.

I only hope that Spine-Health can help you a fraction of what it has already helped me.

I thank the owners of this site for allowing me to have the position I do have and I also thank all the members for making this the site what it is.

I may not always agree with everyone, but I do promise I listen to everyone.

Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • Awe, PapaRon you're the best and I am so thankful for this site and the work you and the others do to allow us to share on this forum!

    I can't imagine where I would be now without all of you! Initially, I was surprised at the outpouring of unconditional support during what has proven to be one of the most challenging times of my life.

    A few weeks after my fusion, life threw a sucker punch and my 23 year old nephew lost his life! Again, the compassion and love surrounded me at a time I could barely speak or think!

    I have developed friendships of a lifetime! And I am so thankful!

    Thank you!
  • Ron,

    Since you have focused on Terror, are you wondering if you need to ban him, or are you debating making him an Authority? Sorry, a little confused with your post.

    I agree there are some that sugar coat, others who are straight to the point. No question. I am one that tries to work logic with the 'human' side involved verses the generic, but you know that of me. I think it all comes down to 'we' are a collective of personalities, and if one isn't breaking the rules, than is there a question in the end?

    You do awesome in working this side of the site, and I am pretty sure, most on here would agree. We are a family! Sorry if I miss-read what your post was asking?

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda my guess is that PapaRon is trying to explain that some people may not like what a person is posting but that as long as they abide by the rules the post stands. I am sure he gets complaints everyday about different posts and that many of the complaints demand that a person be banned or at least warned. Just because I may not like what a person says or how they say it does not mean they don't have the right to say it.

    Who said "I may not agree with what you say but I will defend to the death your right to say it"?

  • Kris,

    You might have a point there. I know a few of his posts of late were um....edging mean, but I don't know what all was behind that. From what little I know of "Terror", if there is a question, he is one that if told he is on the border, he will adjust? I will admit that some of the posts of late have taken me back (MRI questions come to the forefront) ... Thanks Kris.

    I guess I will stick with the "ban or authority?" (G)

    Small edit: For me, when I am having "those kind of days" I just stay away, as my pain can change my personality and posting - not fair to others.....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • dilaurodilauro ConnecticutPosts: 9,839
    Regarding Jon, no, I have no reason to ban him. In fact I applaud what he does on this site
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Okay, good to hear. Soooo that means, possible Authority mode 1-0-1 then? Thanks Ron. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • when a member {usually a new one } wants information about something and depending on who picks up the thread will depend on how it goes .i am also from the. tell it how it. is school {a bit like john}and its hard to jump in and be hard with the facts when everyone has been nice like there is a new thread about a fusion and the person is worried because she has read various things about the recovery and now she is having second thoughts ..i was just about to jump in with my opinion but after reading what everyone else had written ..i did not bother {they had all been nice .don't worry its not that bad type responses and i wanted to give her both barrels !! because a fusion even if it works is not a nice operation and it had a long recovery time .so depending on who picks up the first few comments on a post can determine just how a thread will run and when someone dose put a different twist on it ..it can result in the tread being closed so i find it best to PM them or not bother if i disagree too strongly
  • Great thread. The thing I struggle with is that I am not a lay person, I'm a nurse with over 30 years experience. It is so hard for me to just share my experiences as a patient. Sometimes I see people posting suggestions that make me cringe and at times posts that enlighten me to other possibilities.

    When I first started my work as a nurse, I was overflowing with compassion. Later, I worked in the units, saw a lot of suffering and dying, but to survive I had to toughen up or I would not be able to do my job. So now I try to convey a mixture of both - straight to the point suggestions and supportive compassion without giving medical advice. Not easy lol.

    Best to all,

  • Tony I understand what you are saying but I disagree with your method. People (the one who posted and all who are reading) need to see all sides or thoughts. If I suggest something that you think is wrong then the person who started the post deserves to hear your view and I certainly want to hear. We always have to remember that as we post most if not all of us are on medications or in pain that affect our moods, minds and even ability to type.

    As far as posts being closed - those issues were more along the lines of personal disagreement. We must be willing to agree to disagree in our views. And if there is a new topic that spawns from a post it should be taken to a new topic so we don't distract from the original poster's concern.

    So if I mis-speak or you disagree with what I say please make your views known in that topic. I am always interested in learning new things. That's why we are here after all.
  • i did send my thought in the shape of a PM at the time i read the thread everyone was being ..lets say ..rather optimistic!! and i did not want to start a riot! but you know me ....i wanted to get my opinion across and i was only repeating what my surgeon had told me about fusions and its not as Rosie as most were saying at that time on that thread
    i am a lay person but i have the experience of 15 years pain knowledge and i am married to a health professional and i keep tight with my doctor any medical type information i give ..i always say in my experience and check with you doctor before etc..and i check my facts with the relevant medical people {mainly my wife} but i know what you mean ..i have seen some doubtful suggestions made by well meaning people .if i have seen anything that i feel would hurt the individual i get Kath to PM them with the correct advice {my sources of information are my GP/private physio/and kath and the BNF{ British national formulae}
  • But Tony my point is to let us all know. I am an adult and can deal with being told if I am wrong - geez I want to know if I'm wrong so I don't make a mistake.

    This forum is based on experiences, both personal and with our doctors. When we sign on we accept the rules that say this. Maybe we need another rule that says we can agree to disagree. Healthy debate is a great thing. There are many times I say one thing and someone else says something different and I sit here saying "why didn't I think of that?"

    The last thing I want is to sign on here and have everyone say "oh everything will be just perfect". I can call my mother if I want to hear that!!

    My opinion, and this is just my personal opinion, is that PM should be for sharing doctors names or other info barred by SH rules or for truly personal conversations that no one else cares about. Don't think anyone wanted to read my convo with Jayhawk about horse lease prices yesterday. And last week when I was going into NYC several people shared the names of doctors they went to.

    So please tell me when you think I am wrong or if you have better/other ideas. My ears are always open.
  • i will always let you have my opinion !!
  • I have to agree with Tony on this one. I rarely post my true thoughts anymore cause I've been slammed by other members for being to direct. Jon is constantly being slammed by others because they disagree with him. I've been a member of this site for over 3+ years and its definitely taken some bad turns over the years. Most of my communications are done through PM now.

  • I think as an authority member, it's your responsibility not to "play favorites." I don't see any reason to ban him, but I do think you need to make an effort to see what he says clearly through an unbiased eye.

    People frequently post their MRI reports and ask for information. Having a regular member berate new members for doing so was really uncalled for. That isn't "saying it like it is," that was just downright unkind.

    Yes, of course we do have our moments- it is part and parcel of what we are going through. And I sure as heck someone would kindly send me a PM if I'm having one and say "Hey, sweetie, you're getting a little harsh there." But if we're calling a spade a spade, let's do so all around and say that Terror had a bad night and was rather unkind to some new members. He wasn't telling it like it is, unless it really is against the rules or disrespectful to others to use medical language on the board. But we all are still responsible for our actions and he needs to own up to his.

  • By the way, this wasn't about being direct, this was about someone getting upset over something that happens regularly on the board and letting loose on some new members- namely, quoting MRI scans. Mostly, the new members had no idea at all why they were being berated, but apparently it was a pet peeve Jon had been storing up for some time.

    I will just put out there that recently the board lost a good soul that put a lot of time and effort into helping people and had a really good heart, because she could not abide by the rule that required that she not share the knowledge that she had. Yet, it seems that someone who decided one night on his own that people shouldn't post words that he doesn't know the definition of because it offended him is allowed to drive away new members. Admittedly I am not in the best mental place right now, but that doesn't seem fair :(
  • THere is a huge difference between disagreeing and being rude and hurtful. Saying "I don't agree with what you said" or "this is another idea" is way different than saying "you are an idiot, why did you say that"

    We all have a right to state our opinion. We do not have a right to bully and berate others. Verbal abuse is as bad or even worse than physical abuse.

    It is up to the administrators to take care of the bullies. I have on occasion sent messages to them pointing out posts that I felt were over the line. What they do at that point is not my business.
  • Kris,

    Couldn't agree more! The posts that HB referred to, I remember. My mouth hit the floor when I read them. HB offered to chat with him as (and I agree here) even for Jon, those posts (I think there were 2 or 3?) were over the top, even for him. Personally I like the straight and frank answers that many post here. I guess I like them because they are from fellow spinies, so "they have" to some degree been in my shoes or reeeeaaal similar! :)

    Now yelling at *especially* a new member, that isn't cool, but like you Kris, I have sent PM's to the mods, and like you, once sent, its up to them to decide if said post was okay or not. Good post there Kris!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • dilaurodilauro ConnecticutPosts: 9,839
    There have been some very valid points made. However the last several have started to attempt to 'jab' another one.

    My purpose for this thread was just to let everyone know what they already know.

    People are different, people handle things differently, You never have to agree with what is being said, but you never need to become ugly in trying to 'fight' the other one.

    This is not directed to anyone, but lets put this to bed now... What needed to be said is said.

    Do we, or Can we Agree?
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilauro said:

    [ Snip ]
    This is not directed to anyone, but lets put this to bed now... What needed to be said is said.

    Do we, or Can we Agree?
    Yeppers!!! I vote for agree here! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • ...but on an online forum like this one with over 11,000 different personalities, there are bound to be differences. But like it's been said here before...you take what you need from a thread and leave the rest alone, ignore it. There's no need for anything more than that...just take what you need, give what you can and let the rest go.

    That's just my take.
  • exactly cathy
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • I love this site, it has helped me in so many ways over the past year and a half I've been a member. I love the fact that if I post something, I may log off having learned something new because of a differing opinion/knowledge/experience. I however haven't been visiting in quite some time now because some took their different opinions to the next level and not in a good way. I just didn't need the extra drama in my life, and being a person who suffers from PTSD and anxiety disorders on top of my physical issues, don't need it. I've been lurking again for a couple of weeks, and have once again enjoyed reading the posts, and hope that I can come back to help others as I've been helped.
    Thanks again Ron, and the rest of the team, for the terrific job and support you give to this site and the members!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
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