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Comments made to the HCMA and positive thinking

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Lisa Salberg Find out more about Lisa Salberg
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  • Comments made to the HCMA and positive thinking

    Hello all!
    I have some feedback I would like to share with the board and comment publicly on a few issues.

    Over the past few months we have been working with several families who are in the middle of the journey to understand HCM. Those of us who have traveled this road for a while can recall the pain involved in that adjustment period. One family said that it appeared that those on this board were "happy" to see new people diagnosed with HCM. I think I can speak for everyone in replying with this statement. We are saddened each time HCM is diagnosed as we understand the road ahead for that family, however at the same time we feel good about the fact that the person diagnosed now has the benefit of treatment and thereby a very good chance at a future.

    The topic of exercise has come up a great deal in the past few weeks as well. I would like to be clear on several issues here - Those who wish to participate in competitive athletics (adult or child) must understand that the medical community (NOT the HCMA) has deemed this to not be in the best interest of those with HCM. It is one of the goals of this message board to share information that is in line with the information available in the medical literature.

    Some people feared getting banned from the board for having opinions that were not in line with what they believed to be the position of the HCMA. All posters agree to the guidelines for this board during the enrollment process. Postings on this board that are not in compliance with that agreement will be deleted or taken down and the "poster" risks being terminated from the board (as is the policy with any message board). Having a difference of opinions is not grounds to being taken off the message board – in fact it opens up wonderful dialog that may help us all.

    Sharing our personal experiences here on the board helps many people in many ways. The person posting has the opportunity to share, the reader has the opportunity to think, learn and comment and those who choose to "reply" have a chance to share there thoughts, experiences and comments and so on and so on... that is the strength of this tool and it has changed the lives of so many for the better.

    Words are powerful and lack the personal touch we may pick up from body language or tone, I ask you all to remember this in your postings. I have been told that “we appear happy to have HCM”, “happy” is so far from the correct word. Again I think I can speak for most of us in saying that we would do just about anything to remove HCM from our lives, but we cannot. The question is what do you do when you MUST live with something? The answer, you learn to do it as best you can. That is what we do here in our little HCM community; we live with HCM as best we can. If I/we appear to by happy about HCM, this is an illusion, it is simply how we cope with our lives.

    There are 2 words in my home that are not to be spoken – they are “hate” and “can’t”. I will break my rule for one minute…I hate that I can’t rid myself of HCM. So what are the options…live life and look forward. From my experience having a positive attitude is the key to survival.

    I wish you all peace and good health,

    Lisa Salberg
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Comments made to the HCMA and positive thinking

    Very well said Lisa. I so agree, we cannot change that we have HCM but we can and must learn to live life as fully as we can in spite of it. Life is too short so enjoy life today.
    Midge

    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
    ICD&Pacemaker 1996
    Heart transplant March 19, 2004 @ Mayo Rochester
    Mom of Kaye.

    Comment


    • #3
      Re: Comments made to the HCMA and positive thinking

      Yes, I believe being positive about HCM is the key. Sure it's hard being labeled as different and affected by that difference, but we must go on and embrace those that will embrace us. Sure people without HCM don't understand and in my opinion cannot understand fully. That is why they don't know are hospital stays, needles we take while there, echo, and all that other stuff. My bitterness and anger comes from ignorance and the fact that people continue to want to stay in the dark about it instead of trying to understand the situation.


      I'll say it like this, Ah shoot HCM, Anna (I just love this little guy)

      -------------------------------------------
      Remember, KNOWLEDGE IS KEY

      Comment


      • #4
        Re: Comments made to the HCMA and positive thinking

        I'm not sure why anyone would take the position that anyone at HCMA is happy to hear about new HCM patients. I am thankful that you are here to offer a forum and support for those of us who are either newly diagnosed or have been told that their condition has deteriorated. I first found this site when I was first diagnosed in 1999 and rediscovered it and the message board when my HCM became obstructive this past winter.

        So many of you guys give so much of your time to encourage others and to be there to pass along information. It is appreciated.

        Carol B.

        Comment


        • #5
          Re: Comments made to the HCMA and positive thinking

          Thanks to everyone for the positive comments. Lisa, thanks for the clarification between happiness at the diagnosis of HCM in time to benefit from treatment as opposed to simply happy at the diagnosis of HCM. Diagnosis made on autopsy is a real tragedy, but the positive there is that the rest of the family can be screened and if necessary, receive treatment. Linda

          Comment


          • #6
            Re: Comments made to the HCMA and positive thinking

            When I welcome people to the HCMA, I mean "welcome to a positive, supporting place where you can get answers."

            No, I'm not "happy" that I have HCM, but I am happy that I've been given the opportunity to share my experiences with others and help them through what I've already been through. I'm happy that HCM has given me the opportunity to meet some amazing people who all share my desire to have a wonderful life regardless of the difficulties thrown in front of us.

            I'm happy that medical science has advanced enough that I can live a pretty normal life. If I had been born even just 20 years ago earlier, I may not have lived even this long. I'm happy that HCM has made me rethink choices and helps me choose better ones that I might have otherwise made.

            It is very easy to let HCM consume your life and decide that it precludes all happiness. I spent many years being angry and self-defeating about my HCM. But I can't make my HCM go away, so why should I resign myself to misery?

            Pretending that I don't have HCM will not make it go away and it will not guarantee happiness. Being happy, despite having HCM --or any other chronic illness, is the point of living, if you ask me. I don't always succeed, obviously, but I keep trying.

            I have been giving myself permission to be happy for a long time. I deserve to be happy. This doesn't mean I'm happy to have HCM. I'm happy that I have the opportunity to take a sow's ear and make a silk purse.

            My two cents.

            Sarah

            Comment


            • #7
              getting banned

              Dear Everyone,

              I wanted to speak to the point Lisa made about getting banned for speaking your mind.

              I'm not sure where this idea comes from, but I've seen people post from time to time express this feeling that if they disagree with the "party line" (whatever they believe that to be, or the prevailing opinion in that thread) they will be kicked off the board.

              This is so far from what the HCMA is about, I can't stress enough how important it is for everyone to speak their mind and share their perspective. It is by examining something from every angle that we can gain tolerance, compassion, understanding, and knowledge.

              However, being rude, nasty, insulting, or "flaming" is unacceptable here. We are grown ups and we should be able to talk to each other without resorting to ad hominum attacks.

              The greatest failing of any message board is that all the nuances of tone and expression are lost. Word that may not be insuting in tone can come across that way when set down in pixels. I try to err on the side of being overly polite to compensate for this.

              I should tell you all that I was in academic debate in high school, college, and then coached debate. My father was a lawyer and my mother edited all of his legal writing. Stating things plain and simple, and matter-of-fact has been pounded into me. Pointing out errors and mis-statements is like breathing to me. I work very hard to curb my natural curtness, but I am not always successful--as I'm sure you are all aware.

              This seemed like a good opportunity to let you all know that if you ever read one of my posts and think, "wow, she is really mad at me," I'm probably not. I can almost guarantee that I'm not.

              You will NEVER ever hurt my feelings by PMing me and asking me to clarify what my intent or feeling or meaning behind a specific post is. I will be happy to clear any miscommunications up at any time. Even a very old post.

              Please feel free to PM or e-mail me if you have a personal concern about my posts. Just because I'm "the moderator" doesn't mean I don't care about I'm coming across. Because I really care about everyone here and I know how hard this road is for all of us.

              Thanks,

              Sarah

              Comment


              • #8
                Re: Comments made to the HCMA and positive thinking

                When I was welcomed to the HCMA community around 4 years ago – I was greeted with kindness, compassion, information and guidance. I have never sensed for a minute that this board was ever happy to hear of a new diagnosis, maybe happy to be of help or happy this new member discovered the board, but never happy to hear of another diagnosis. Since Lisa put this post out there, I’ll share my thoughts on something that bothers me a bit on occasion.

                It’s all about timing - what to say & when to say it. There is a transition phase between diagnosis of a loved one and acceptance, similar to death of a loved one and acceptance. Some stages we need to go through before reaching acceptance and growth are shock, denial, and anger. I know the replies that I am referring to were written out of concern, understanding and compassion, but I thought it was a little too much too soon.

                I believe with every fiber of my being that there is a reason for everything – that thinking has greatly helped me accept the hand that my family has been dealt. Although these words work for me, they don’t work for everyone, especially when one is angry and struggling. They can’t understand it yet and it only makes them angrier. I think every once in a while we try too hard to get one to understand that life does go on, things will be better, this one or that one will cope eventually, blah blah. Words are powerful as Lisa stated. Normally, the words I see here are wonderfully typed, insightful, humorous and warm, we really do mean well. Since Lisa put this post out there...I figured it’s an opportunity to add my two cents.

                I am thankful for this board – it’s usually a part of my daily routine and I don’t fear that going against the board and sharing my personal opinion will get me banned from the board. We do go against the medical advice of most & the thoughts of many on the board by allowing our son to continue with baseball - we may hear about it.......but wouldn't be terminated for it!

                Lisa, it was great to post the feedback of others because it wil only help the board in the long run.

                Karen

                Comment


                • #9
                  Re: Comments made to the HCMA and positive thinking

                  Thank you all for your input on this thread - I do hope to hear from more of you.
                  You all have added wonderful comments and I think they add to the dialog. It is with time, understanding and compassion that we do our best work.
                  I have found myself suggesting more lately that people slow down a bit in attempting to have a full understanding of HCM...in short - this is a complicated disease and "we are all a little different" .
                  Those who want all the answers too quickly are often overwhelmed with information... the good/bad news is HCM is not going anywhere and you have time to learn.
                  Risk stratification and family screenings in my view are the most important first steps for any family. After that the more detailed information can be looked into and meds managed and options reviewed.
                  We are in this for the long haul - we will be there for all of you.

                  Best wishes,
                  Lisa
                  Knowledge is power ... Stay informed!
                  YOU can make a difference - all you have to do is try!

                  Dx age 12 current age 46 and counting!
                  lost: 5 family members to HCM (SCD, Stroke, CHF)
                  Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                  Therapy - ICD (implanted 97, 01, 04 and 11, medication
                  Currently not obstructed
                  Complications - unnecessary pacemaker and stroke (unrelated to each other)

                  Comment


                  • #10
                    Re: Comments made to the HCMA and positive thinking

                    Hmmmm.

                    I really really really was trying to stay out of this one but my new meds are kicking in and i'm feeling my oats today so here i am

                    I agree with everything all of you have said with very few exceptions. I feel that the forum has been of immeasurable help to many people simply by providing an opportunity to meet others who are unfortunately in the same boat as ourselves.

                    I also believe in challenging my doctors and specialists to do better work, and am glad to have a forum to be able to do that without fear of reprisal. We're all big boys and girls and should be able to take the bad news with the good without taking it personally. Ahem. We're not doing ourselves or our medical professionals any favors by patting them on the backs all the time, or by assuming that they'll always know what's best for us, or by letting them slide when we don't feel they're doing their jobs. I will only buy 'everyone with HCM is different' to a certain point. It's a valid enough statement, but at the same time i won't allow it to become an excuse for poor care.

                    I don't know where the comment came from about the HCMA being happy to see people diagnosed with HCM. (I didn't make the comment folks, really, Lisa was not talking about me on that one). I do however have some understanding of why someone would say that. When i first started posting here a few months ago i honestly had similar feelings. I thought... 'These people are actually happy to have another passenger on their little HCM train. Another member of the group so they don't have to feel so alone. Misery loves company, and all that.' I don't feel that way anymore, so please don't all of you get mad at me!!!

                    When we read posts here regarding family members that get tested and find out they don't have HCM, i do wish sometimes we could all just be happy for them without always having to add the 'buts... and what-ifs... and hmmms...' When someone shares the news that their loved-one doesn't have HCM, sometimes the replies to these posts almost sound disappointed, like we're saying 'we know you have HCM, they just haven't found it yet'. Good lord. They'll go get tested again when they need to. But for today, they're HCM-free. Be happy! Go live your life! Go out and play football, and skydive, and do all the things we wish we could but can't!

                    That's all from me... fire away folks

                    Jim
                    "Some days you're the dog... some days you're the hydrant."

                    Comment


                    • #11
                      Re: Comments made to the HCMA and positive thinking



                      Just kidding.

                      No flames from me, Jim. That's what's great about this place. You can say what you want, as long as you don't attack others. That's the whole point of this board.

                      Reenie
                      Reenie

                      ****************
                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.

                      Comment


                      • #12
                        Re: Comments made to the HCMA and positive thinking

                        OK I feel I must comment on Jims posting - It appears Jim that you think that I may have been talking about you or your postings in my original posting on this thread - funny thing is I was not ...
                        I just wanted to let you know that.

                        Be well!
                        Lisa
                        Knowledge is power ... Stay informed!
                        YOU can make a difference - all you have to do is try!

                        Dx age 12 current age 46 and counting!
                        lost: 5 family members to HCM (SCD, Stroke, CHF)
                        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                        Therapy - ICD (implanted 97, 01, 04 and 11, medication
                        Currently not obstructed
                        Complications - unnecessary pacemaker and stroke (unrelated to each other)

                        Comment


                        • #13
                          Re: Comments made to the HCMA and positive thinking

                          Oops!

                          Let's not go down this road again. You know how much i appreciate everything the HCMA does. We all do! I can be a royal pain in the butt sometimes, but you guys really wouldn't me any other way would you?

                          Take care all,



                          Jim
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #14
                            Re: Comments made to the HCMA and positive thinking

                            My twenty five cents worth. Ok maybe just fifteen! I am truly grateful for this site and glad that there is a place we can go share our world and living with HCM or in my case HOCM.

                            I HAVE NEVER EVER MISTAKEN the warmth, support, information and the TRUTH here as being anything other than exactly what it is. A SUPPORT group and not a recruiting club for HCM! If you think I'm yelling I'm sorry but I want to get across how grateful I am to have this site to come to and what a precious gift it is.

                            To Lisa and all the people who work so hard to bring us this wonderful place where we can come and share and not feel so a lone with this life changing illness, THANK YOU! YOU ROCK!!! Ok I'm yelling (I'm an old rocker hence the you rock thing) Can you tell I love emoticons?

                            Thanks again,

                            Diana

                            Comment


                            • #15
                              Re: Comments made to the HCMA and positive thinking

                              Jim - We know - and we love ya for who you are!
                              Diana - thank you for your input! - love the rocker dude!
                              Lisa
                              Knowledge is power ... Stay informed!
                              YOU can make a difference - all you have to do is try!

                              Dx age 12 current age 46 and counting!
                              lost: 5 family members to HCM (SCD, Stroke, CHF)
                              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                              Therapy - ICD (implanted 97, 01, 04 and 11, medication
                              Currently not obstructed
                              Complications - unnecessary pacemaker and stroke (unrelated to each other)

                              Comment

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