Your forum time...is your spouse, family, SO, supportive??

[Guest]

How does your spouse, significant other or family feel about the time you spend on this forum?

Heh. To my family and friends ... it is NOT just VR.com. Along with this forum, I have another heart forum, about 6 MC generation-specific boards, 5 general MC forums, 3 Chevrolet/GM forums, and a couple others as well. So, you might say I'm addicted to forums/the internet.

But, I prefer to say I'm addicted to people. The forums are my way of keeping in touch with everyone.

My friends/family at first thought I was nuts ... thought that spending "so much time" online was not a good idea. Then, they saw my write ups on my road trips ... and the pictures. And, then, they began to understand. I doubt they fully do understand, but they are a lot more accepting/supportive of them....



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Love don't come easy" ... Baillie and the Boys ... 'Wilder Days'

 

[debster913]

Interesting thread, Marguerite!

Gina--My hubby is an online game addict too (he loves playing EverCrack, I mean, EverQuest ), so he has no right to challenge me on my online time! Besides, I'm finishing my CLAD certification online and I keep in touch with many of my out-of-area friends through e-mail. I'm always on the computer, part of my job, part to have fun.

But, yes, Mike is supportive, though. He says he worries more about me now that I've had surgery than he did before my valve repair. And, as many of you know, I've had a pretty interesting post-op experience with my constant runs to Dr. V's. (first there was my syncope episode in the shower, then severe dyspnea from the BP meds, then changing my beta-blockers, and then the stress echo--I can only say I hope all that craziness is over with and I can actually make it three months without having to see the cardio! The nurses joke that I just want to see Dr. V because he's so good-looking...um, no.--Greek men are hot, but not my doc. If he is hot, it's because he's hairy.)

And although Mike respects the time I spend online prowling the boards here and posting, he accuses me of being "fixated" on my valve. I literally have thought about my valve at least once a day since last April. Before surgery, it was, great, I'm short of breath because my valve is failing; now, it's I'm short of breath from my new beta-blocker/recovering from surgery. Like my cardio said, it'll take a while yet from my heart to adjust to it's "new" mostly non-leaky valve. And in that regard, it'll take some time for me to adjust to the post-surgery me. In many ways, both good and bad, I'm not the same person I was before June 16. Mike says there are two phases of my life: B.S. (Before Surgery) and A.S. (After Surgery). I can say mostly that my worries have subsided and I don't freak out as much over weird little symptoms (just attribute them to recovery and adjusting), but I wonder if there will ever be a day when I don't think about my valve at least once. Have any of you gone through that?

I have to say, though, that VR has been a blessing. I stumbled across this site shortly after my cardio first uttered "valve replacement" and I was scared; now, almost two years later, I find myself so grateful that I'm not the only one to have gone through this. Talking with many of you on the boards and in PMs, I've realized that it's not silly to have the concerns I've had. I probably would have ended up in my cardio's office or on the phone with him a lot more if it weren't for VR. You are like a second family. Mike understands and respects that, and I'm trying to get him to sign on so he understands more about what I've gone through, because he still freaks out when I sigh a certain way or seem to have a weird symptom. Then he threatens to call my cardio. And who's fixated on my valve?

Susan--No probs here with my picture avatar, but I do like seeing faces with names. Like I think Adrienne said, it makes me feel like I "know" who I'm replying to.

Debi (debster913)

 

[twinmaker]

I'm addicted. I admit it. But what a wonderful thing to be addicted to. As a group we have so much in common, and we're able to share the things we're going through concerning our valve problems knowing that there are others that can totally understand because they too "have been there, done that." And then because we can share these heart issues, we can also share the other things that are going on with us, because we know that we are a loving, concerned, understanding group. What else could someone ask for. My husband is very supportive of the time I spend on VR.com. And he is well aware of my time spent here as his office is in our home. I've talked with him about the different people on this site and what's going on. I guess when it comes to valve problems, he's been a part of mine since the 3rd year of our marriage. We just celebrated our 35th. He's been a wonderful advocate and supporter of mine. Of course, he does realize that he can never totally know exactly how I feel about my valve issues, and I guess that's why he doesn't mind the time I spend here. LINDA

 

[hensylee]

I discovered VR by accident because I had questions about bypass and there is so much to learn here about so many phases of heart conditions from sanity, stress, anger, medicines, physical conditions and most important, the workings of the heart itself. It's the center of our being, after all.

Besides that there is the comraderie in VR. I have made many friends. I wouldn't have them if there wasn't VR. I don't regularly visit any other sites except Jigzone (jigsaw puzzle daily free one).

There is nobody in my household who is bothered by my time on the computer and encourage me to continue with any of it that I want. There is only my daughter here and we each have our own computer and neither of us would dare tell the other what sites to go on nor how much time to spend there. We respect each other's interests. My family and friends ALL know about VR.com and are interested in things I relate that I have found here.

The site has helped me and others I have loved (my brother, in particular) and that's been such a comfort. I have received support when it was needed and believe me, there have been some rough times for me and I often turned here for words of comfort. I hope I have provided a few for others in return. You can pour out your heart and everyone lets you, whether they understand or not. Members just give good wishes and prayers. No condemnation.

Don't give up what gives you peace and comfort in good and bad times.

 

[OldManEmu]

I have become addicted. I found VR about 12 months before I joined when I was facing surgery; I was an avid reader/researcher. Then I dropped off for a few months after surgery, then started to have a read again about post surgery recovery and finally joined. I usually now have a visit at least once a day however I only bother logging on if I want to post and as you can see in 18 months, I haven't been the most prolific poster. This is the only internet forum I am a member of. As for people saying you should move on I think with the exception of mitral valve repair members, all the rest of us remain heart patients for the rest of our lives. Be it mechanical valvers with the rigors of warfarin or tissue valvers with a redo in there future. So given I am a heart patient for life you a probably stuck with me for some time to come.

 

[Marguerite53]

Thank you, everyone, for your responses. Some lovely sentiments have been unveiled. Nancy, how poignant for you to respond, and in such a meaningful way. I hope you are doing well these days. I am SO glad that you are still "knocking on our door".

As everyone has said, it is the community of support here that is so special. I appreciate the comments that were given suggesting that without this place, some of us would certainly have over-used our spouses, family, doctors, etc. for every bad day, and every seemingly serious question. I plan to use that the next time I get "cornered".

I think much of my family's attitude comes from the fact that my kids are at an age when we are breaking away as the parents and they are wanting to parent us "since they know so much now". I also think that since, in this day and age, you have to watch your children like a hawk to keep them safe....and you have to demand communication and accountibility so often, that we are, this little family of 5, a somewhat nosey and judgemental bunch! They have been watching over me closely. They do not want any changes.....life was good......stay the course. You had us worried sick, you made it through, now let's forget about it all since it darn near drove us crazy. But did I ask for their opinion? No. Must they hover?? (as if I'm not the hovering Queen). Would they just spy on me silently? If there really is a "Cognito", can I give them a map to go there??? ( that was too cute, Karlynn!)

In my husband's case, I know he'd just rather I was doing something else besides sitting on a computer. He has to be on his much of the day at work so he equates it with getting business done. And he deals face to face with so many people....he just doesn't completely trust the whole thing, the breaching of anonymity. But, he's never had to hand his life over to a surgeon like we have either. That takes HUGE trust. A trust that needs all the support it can get, I think!!

It has been very interesting to hear how you share VR.com. I'm glad that you all seem to like the thread, too. That's nice!!

Seems like I should say something like ...all right.... time for a group hug!!!!

Marguerite

 

[Ross]

I came here questioning when I was told that I'd need my Aortic valve replaced. I was not new to heart surgery and was still petrified after the first surgery. Well my AVR didn't go picture perfect and the members here literally, with their cards, emails and postings, which my wife and sons printed out and brought to me in CSICU, brought me out of a very negative tailspin. 50 days in ICU can do that to you! I really do not believe I would have made it without the prodding that I got from all of you. I'm forever indebted to all past, present and even future.

With that said, my wife has seen first hand what it has and hasn't done for me. She knows that this was a lifeline for me and doesn't complain about it. I'm sure there are times she'd like to pull the plug, but she knows and is appreciative also. I vowed after that ordeal that I would come back and be a regular member and have done so for the most part. Lately, I'm so busy with home and health problems, that everything is taking a toll and I'm starting to stay away from the computer more and more.

The people, the help, and just about everything (well minus a couple) have kept me here.

 

[Superbob]

Ross,

Vr.com would not be what it is without you. Your guidance, your wisdom, your sense of humor, and, yes, your opinions. Please don't ever be deterred from giving them.

 

[MikeHeim]

Marguerite-
This is an excellent topic and I?m glad you thought to bring it up. Michele (my fiancé) is pretty much tolerant of my time spent on VR. I won?t say it?s always been that way. Before surgery, I spent A TON of time on this site and others trying to find out as much as I could so I could make the most informed decisions. I also used the forum to vent and voice my concerns. However, to Michele and the outside world, it seemed like I wasn?t the slightest bit concerned about surgery or my condition in general. Of course, this couldn?t have been further from the truth, but I wanted to appear strong to them and use the internet as my sole place to vent. To this day, I think Michele is hurt that I chose to share my feelings more with complete strangers on the internet than I did with her. What she?ll never understand is that it seemed so much less real to discuss on the internet than if I had to discuss it with people in person. Probably not the most healthy way of coping, but it worked for me at the time.

In the first couple months after surgery, Michele downright told me that I needed to get away from the site (unsuccessfully). At the time, I was freaking out about every little twinge of pain, slight fever, palpitation, breathless episode, night sweat, skipped beat ? I think you get the idea. She thought that since I was constantly hanging out on a website where people had problems (such as failed repairs and Endocarditis), that I was constantly getting ideas in my head that something was wrong. To be perfectly honest, she may have been right. This site is of course gong to be a hangout for people who have more than the average number of issues pre-op, post-op, or mid-op. It seems like a large percentage of the people who have a relatively ?routine? OHS fade away into the sunset after the first few months of surgery. However, I can?t imagine how difficult those first few months would have been if I didn?t have this site to ask question after question, and get the reassurance that I needed to stay out of a state of constant panic.

These days, I still check VR multiple times each day, but I find myself posting less. At this point, I use the site mainly for educational purposes, and to pop in my two cents if I think someone has a unique problem that I can help with. I think Michele has just accepted it at this point. I think that was her only option.


Susan BAV-
Just to pipe in on your question ? I have absolutely no idea what problems could be caused by posting your picture in your avatar. Remember ? I already know what you look like.

 

[Susan BAV]

Marguerite - This is an interesting thread and I'm enjoying it. I think one of the other benefits of a forum like this is the anonymity. Of course, VR.COM has the information and the support and the encouragement, etc., from people who have gone through some similar events. But sometimes, we just need to vent or espouse worries; and some of the things we may "whine" about here would not be things, necessarily, we would carry on about anywhere else or to anyone else, to anyone who would want to listen to us for any length of time anyway. We also have to think about how we're going to express ourselves here and we want to do it with some clarity and intelligence and we can edit ourselves; and a lot of the emotions - which can be difficult to deal with face to face - are subdued just by the nature of this form of written expression.

BTW, Marguerite, thanks again for the PM.

And Nancy, as usual, your post was beautifully eloquent and encouraging.

 

[Marguerite53]

To this day, I think Michele is hurt that I chose to share my feelings more with complete strangers on the internet than I did with her.

QUOTE]

Mike. Much of what you said rings true for me especially that my husband may have felt left out. But then, how many times did he say, please don't dwell on this and that....or, but I thought you'd already decided about that. etc. etc.. And then, just now, with this response from you....I feel as if there is someone out there, you, who is sharing my experience. That just means alot! SusanBAV does make sense in her comments that follow yours. The anonymity does work. I know I do work carefully, usually, with my responses, so that they say what they should.....I craft them. Sometimes it's too bad we can't see each other's emotions or facial expressions....sometimes the exchanges would go better. But it is true that I come here with whinings and questions that I would never now consider burdening my family with. How great is that???? It's like a big therapy couch!!! And I don't even have to pay you guys to listen. You WANT to listen. This whole thing just works so beautifully!!!

I love this place!! but I've really gotta go start dinner!!!

Marguerite

 

[Philip]

I would respond to this but I may get in trouble.
Philip

 

[BDMc]

Typical Marguerite...

Typical Marguerite...

To start such a good thread! My name is Brian, and I'm a friend of Hank's. My friends and family know about this place, but none know of how much time I spend lurking or posting. Today is a rare luxury, in that I actually have some free time before 10:00pm. I came here quite recently in my heart history, surgery 10/26/84, but found it tremendously helpfull, and still do! I had my 2006 annual check up with my PCP last Friday, (That's another story) and he said I probably knew more about my valve than he does. Almost all of that is due to this forum, and posted links! What really keeps it vital for me, is the sense of community. I thought in the begining it would be a way for me to give back. I hope some of my posts have been helpful in quelling some newbie's fears and anxieties. These days I am much more selfish in my motivations for being here. I want to check in and see how my friends are doing. Like Cort, I belong to several on line communities, 3 for sailing, 1 kayaking, My Space (for music) and this wonderful place. There are many of you that I have come to care deeply about, and whether it's good or bad news you share, I want to hear it. As for the photos, mine are already all over the net. I haven't had a problem yet. I love being able to put a face with a name. This "open heart" thing seems to have a way of virtually expanding mine! I have so little time for friends and family, that I am always telling myself not to extend myself to anyone new. Invariably, I find somebody has made their way into my life, or at least my thoughts. So even if I haven't replied to your posts, you may be in my thoughts, and I may think of, and care about, you as a friend. A sense of community is invaluable! Your valve bro, Brian

 

[Susan BAV]

Brian!

What an excellent post!

 

[rbl1999]

Hi, I haven't posted for a while but could not resist this thread. This forum is a life saver. I learned so much before my AVR and was able to go into it so well prepared. (Well, as prepared as one can be)!!!! My husband has no problem with the time I spend on here, he knows and respects all the information that I have gotten here. After my surgery, when I was up most of the night with pain in my back and shoulders, I would log on here and always feel so much better! The advice I got here was the best, we sure are a special group of people... Rose

 

[Marguerite53]

What really keeps it vital for me, is the sense of community. I thought in the begining it would be a way for me to give back. I hope some of my posts have been helpful in quelling some newbie's fears and anxieties. These days I am much more selfish in my motivations for being here. I want to check in and see how my friends are doing. ...... There are many of you that I have come to care deeply about, and whether it's good or bad news you share, I want to hear it. ....... Brian

Ditto all that, Brian. So nicely said!!

Weekends are family time for me so I'll pop back in on Monday morning with my coffee (I'll have to jump over and read Ross' Cowboy coffee thread then, too!). I really am trying to limit my time, though I know I'll peek to see if there is any news from any of our surgeries this last week.

Thanks again for the varied and personal responses!

Marguerite

 

[Aussie Chris]

Yeah Addicted too!

Yeah Addicted too!

I will try and quickly scan the "Today's Post" just to see what has been happening and before you know it what was going to be a 1 minute visit extends to ............

It is like saying good bye to friends at the end of a visit.

My wife doesn't understand the addiction. I explainhow useful VR was to me at a time of need, and I just wanted to give something back, not to mention catch up with what has been happening with a bunch of old friends.

I don't suppose I can ask you guys, "Do you ever get over VR.com"?

Cheers,

Chris

 

[Guest]

As for the photos, mine are already all over the net. I haven't had a problem yet. I love being able to put a face with a name.

Me, too! Yet another reason to meet people along my travels . And, I, too, haven't had a problem yet. Tho, some of my friends from the various boards jokingly remind me that if there was a problem, it'd be pretty easy to "snuff" out the "fake" Cort .

This "open heart" thing seems to have a way of virtually expanding mine!

And, mine, too! Since I posted that "2007-4-20-30" thread a week or so ago, I've found out a few others from my other boards have relatives or friends that have heart issues ... and, just today, received an Email from my sister indicating that one of her co-workers' wives is facing heart surgery in the near future ... and, of course, I directed my sis to direct her and her hubby here .

So even if I haven't replied to your posts, you may be in my thoughts, and I may think of, and care about, you as a friend. A sense of community is invaluable!

AMEN .



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"I never back down and I love a good challenge" ... Hank Williams Jr ... 'Born To Boogie'

 

[PegB]

I truly can not imagine having OHS without this site. I wouldn't have had a clue about what was happening. I lived on here the first few weeks home, comparing my p.o. symptoms to everyone else's. That search feature is a wonderful "friend". I didn't ever have to call the Dr.'s office, because all my questions were answered here.

Now, when I get "caught" on here, I get told that maybe it's time to stay off this site and move on to something new. Just like Mike explained, it appears I'm looking for things to go wrong. The truth is, I'm not really here about my recovery very much anymore. This is just the greatest bunch of people ever. I LOVE the baby pictures, the small talk news, the goals met, etc. And if there's one thing you can say to a frightened new person, to make the journey a little easier, then it is all worth it. I think we all want to give back and help, since we know what it was like to hear those dreaded "surgery" words.

So, I will be on here no what anyone thinks. If you're not a member here, you could never understand the pull.

 

[sue943]

I did have OHS without knowing about this site, I didn't discover it until more than five months after my surgery. Even then it was by chance, I was looking for information about the effect on INR by exercise.

Had I found the site prior to my surgery I am fairly sure it would have altered the choices I made at that time.