ar_vin

May I respectfully remind you that this is supposed to be a support group.  Any openly hostile, ridiculing remarks made by you towards other members in the future will no longer be tolerated and will always be removed.  How another member’s “genuine” distress can cause you such “hilarity” beggars belief.


16 Comments

Recovering and Struggle

by Stache - 2022-05-13 14:43:03

Thank you for posting this.  I stopped posting because of the feedback I received and this is the first time in months I have logged back on.  I came to this site seeking reassurance and help and found ego gets the best of some.  I didn’t need the ego or negative comments as I struggled with my condition and the depression that came with it.  I am on month 15 since my 3rd degree complete heart block and mostly recovered except mentally as it is a daily struggle.

I hope you will stay with us

by Gemita - 2022-05-13 19:00:12

Dear Stache, thank you for sharing your experience with your Pacemaker and your struggles in coming to terms with heart block.  When we are feeling vulnerable, it takes courage to open up to strangers for the first time and I am truly sorry that you found some members less than caring at a time when you most needed help.  I hope you will come to realise that the majority of members in the Pacemaker Club are kind people, always willing to offer support, many of whom have now become my friends.

I hope you will stay with us and will log on more frequently.  We value your contributions.  I wish you well

Also hope you stay

by Persephone - 2022-05-13 22:28:38

I'm with you in spirit, Stache - here is my simple message to say please stay in touch.

thank you

by new to pace.... - 2022-05-14 23:09:29

Thank you Gemita for keeping us safe from those who do not care.

new to pace

Pacemaker forum or psychotherapy?

by ar_vin - 2022-05-15 02:31:01

It's time for the (missing) admin of this group to address the purpose of pacemakerclub.com

First, I stand by everything I posted on the other thread - my post was censored ("deleted").

For Gemita: if you think this is an online therapy or support group, you are hallucinating!

This is simply a very useful forum for people to share specific issues, ideas and suggestions from their own experience about pacemakers.

This is NOT and can never be a substitute for specific advice for psychotherapy (Gemita seems to like to play psychotherapist here).

For those that are lonely and need help or support (medical, emotional, mental, other), please seek out the appropriate resources in your community. THIS is not the place for either giving nor of receiving such help. By it's very nature it cannot be.

Let's stop pretending that this is a "support group". It most definitely is NOT!.

For Gemita: please stop misleading vulnerable people into believing that you are helping them deal with what might be very real issues that can only be addressed by professionals or family etc. YOU are NONE of that - pretending otherwise is tantamount to "practicing without a license".

If new_to_pace has real problems, then new_to_pace needs to find help in their community - NOT here.

Stop posting irrelevant questions/issues on a forum that is about pacemakers and marginally about heart rhythm disorders.

If Gemita wants to practice psychotherapy, please have her start a forum dedicated to that purpose.

BTW, I feel honored that an entire thread is dedicated to me! LOL.

ar_vin

by Gemita - 2022-05-15 05:50:38

Our Pacemaker Club rules are clear and yet you continue to break them, despite warnings.  I had no option other than to remove your brief comment when it added nothing to the conversation and indeed only served to cause offence and ridicule.  The member in question is in her 80s, reported a number of concerning visual disturbances and asked whether lowering her Upper Rate of 130 bpm could help reduce her fast beats and all you had to offer was and I quote:-

1 Comments

LOL

By ar_vin - 2022-05-13.  01:59:50

Sorry this is getting hilarious!

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Now ask yourself ar_vin was that really helpful or kind on an open forum when a member asked a perfectly sensible question?   Did she deserve such a comment?

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I will continue to try to help members who come here looking for support on pacemaker issues or who are trying to come to terms with their ‘need’ for a pacemaker.  The latter is clearly a big part of their journey and anyone with any compassion and tolerance will know this.  We have always guided members to seek professional help where the member appears unable to cope with their new device or diagnosis.  This has not changed.  However the vast majority of members come here looking for simple reassurance following their implant, whether the symptoms they feel may be normal and experienced by other members, or whether they need to seek help. 

I am afraid whether you like it or not, rhythm (electrical) disturbances will always form a major part of the discussion here because they are such a frequent cause of needing a pacemaker and of ongoing symptoms.  The Club is far more than just a place for technical pacemaker issues, as important as this is too.  It is a place where we come together to learn about what to expect following our implant, how to get the most from our doctors, how to get past the why me period and the fear of having a pacemaker, how to learn to live well with the pacemaker.  Can’t we try ar_vin to do this in a friendly, compassionate way, showing more tolerance, respect and understanding towards others?  You have made some excellent posts and contributions, now can we try to find a better way forward?

ar_vin

by AgentX86 - 2022-05-15 11:59:30

Of course you're wrong. Of course this is a support group. Whether it be a technical issue or coping problem, ur whole purpose is to help others, when we can.

Again, you're wrong. From the "about" statement:

"About

Pacemaker Club is an online community for pacemaker, implantable cardioverter defibrillator (ICD) and cardiac resynchronization therapy (CRT) recipients. Our purpose is to help implantable device recipients meet, share information and support each other.

Note te word "support" in there"?

Then there is the common decency aspect. If you feel compelled to berate others, perhaps you should look in the mirror, closely.

If you don't like what's on the channel,  find another that suits you more.

Ar-vin

by toniorr11 - 2022-05-15 12:49:04

I am extremely grateful to have found this group. Of course it's a support group...support from people who have become expert patients and have a wealth and breadth of experience and knowledge of their pacemaker story. I wouldn't expect medical or clinical advice but having a friendly person say hi there, (and this was my experience)has been extremely useful to me. It's been an intensely emotional experience for me this week. I'm frightened and getting used to a completely new way of life and I hope that I can support others in the future in whatever limited way I can. 

Ar-vin

by Aberdeen - 2022-05-15 13:10:09

I agree with everything that Gemita ,Agent 86 and others have said. I have had 3 pacemaker operations since January 2020. All my operations have been emergencies and I have found that on this site many people (particularly Gemita) have helped me immensely.

Ar- vin you need to be kind!

The road to hell is paved with good intentions

by ar_vin - 2022-05-15 15:18:32

It's not my place or my intent to question anybody's intentions!

But I feel compelled to point the flawed thinking behind "noble goals" such as:

- this is a "support group" 

- one can somehow provide real emotional support through any such online medium

Road to hell

by AgentX86 - 2022-05-15 18:22:52

AR_VIN, I don't give one crap what you think. It doesn't change the fact that you're wrong. Just read the club's stated purpose. And yes, support groups can help. Members often know what's "normal" more  than their doctors do. There is something about "being there". If you don't agree with the club's intended purpose it's not for you.

There is, of course,  is good place for professional help but it's not always needed and is often gross overkill. All that's needed is to talk to  someone who  has been there.

The larger point, though, is your absolute lack of respect for others. Yes, perhaps you think everyone does need more help than can be given here but do you really think that attacking or ridiculing them helps?

Bottom line, if don't think you can help, don't. If you don't like the club, it's pretty easy to quit. I'll even refund your membership dues out of my pocket. OTOH, if you're just another troll, that can be dealt with too.

Agent - I salute you!

by ar_vin - 2022-05-15 19:46:01

Thanks for sharing your thoughts.

We'll just have to agree to disagree.

agree to disagree

by athena123 - 2022-05-15 21:19:29

This forum has always helped me in my times of need. The inclusion and valued advice among all our members is second to none. Here were getting real life advice from people whose  main goal is to have a decent quality of life, and  because most of us this has been very traumatic to deal with. People like gemita, agent,tracy, the list goes on have been extremely instrumental in educating me not only with medical advice but also a shoulder to lean on when im feelin low. Im so thankful for this support group and its members. 

Salute

by AgentX86 - 2022-05-15 23:27:56

If you think that anxiety is a laughing  matter or that insensitivity is cool,  you bet that we disagree! My bet is that there are few who agree.

Support

by Old male - 2022-05-16 10:14:50

After first shock (therapy) from my ICD several years ago, I called a friend with years of experience with the device.  I had questions and he answers.  It was helpful to have someone to ask that was experienced.   As years have gone by, a close friend had to have an ICD.  Now, I am his contact with answers and advice for his concerns.  Advice is limited to personal experience and sometimes I have to say "call the doctor".  Definitely helpful to discuss concerns with experienced patients.  Be compassionate. 

"The road to hell is paved with good intentions"

by Persephone - 2022-05-16 19:17:38

Aww, heck - this explains the handbasket that showed up on my porch uninvited. Oh well, at least I'm enjoying the ride.

You know you're wired when...

Muggers want your ICD, not your wallet.

Member Quotes

Life does not stop with a pacemaker, even though it caught me off guard.