Haven't posted in awhile, but this one got my attention. I am almost 3 years out now, and STILL wake up daily thinking "is this going to be the day. Is it going to happen again. Am I going to die". Mind you, I am still on Coumadin. So, completely get the anxiety. It takes control of your life if you let it (which I obviously have) and is devastating at times. So when I am in a highly anxious place, I really do have to avoid certain threads based on the subject. Sometimes I go back to them when I feel a bit more calm, sometimes I don't. Sometimes I take a break altogether. But I ALWAYS come back because the people here and the compassion shown is amazing.

Point is, I think we all need to pick and choose what we need in that given moment. If it is avoiding issues of PE fatalities, sobeit. If it is reading them and realizing just how lucky we survivors are, well that works too. Sometimes we can't help that "morbid curiousity".... sometimes it helps... sometimes it doesn't.

I would hate to see someone leave the group because they saw something "bad" or negative. Let's face it, nothing about PE's is good. But, it is something that happens. And has happened to us. Here we are though, able to read these posts, comment, get upset, angry, happy, relieved, and whatever else. That in itself is a great thing.

p.s. RMB I remember the man you spoke of... it was indeed very hard!

Well said, Jean.

Do I think Jack Ruby's death is relevant with regards to early PE diagnosis ? I do not, at all. Do I think elsner is trying to not be supportive or is trying to scare people by mentioning this fatality? I do not, at all. I think he, like most people, are trying to do the right thing.

Most people are coming from a place of decency here so we need to just cut each other some slack sometimes and not take things too much to heart. I know I've had to remind myself of that many times over the years I've been on this group and I've been far from perfect with that but what can I say; I'm a mere mortal. We just have to take this group for what it is, people just trying to help or just trying to figure it all out. The operative word here is "trying."

It's a strange thing to share this unique experience, a PE, with total strangers. We don't know each other, what makes each of us tick, what we are really trying to say vs how what we say, and how we ourselves, are perceived, and yet most of us try to take care of each other the best we can given those limitations. Pretty damn cool, frankly. .

Mrs Schicopea, I do empathize with your anxiety and, kind of, understand your words regarding avoiding certain subjects: when we are in a vulnerable state, we do not need to add it.

In my case, reading about PE fatalities offers certain comfort, as my dad was not lucky as I was: he died from PE in 1997 and, for years, the family was very angry that the hospital had not attempted to reanimate him. Reading about other fatalities tell me that he's not the only one and, being a PE survivor, I now understand that having a PE still brings a very high risk of dying.

Furthermore, I may be in a different place than most people, as I volunteer with a grief support group, where we talk about grief and hear others talk about their grief. I'm constantly asked if volunteering in such a way is depressing for me. It is not, because I know that we have to live our grief in order to heal.

All of this to say that, while I'm not one of those who avoids information about PE casualty, I can understand how stressful it can be for other.

Hugs to you.

I agree, RMB, about it being very cool that we can share and help eachother on this site. Even though we don't know eachother on a personal level, we can share like we do. I don't feel like I can talk freely with friends and family on a daily basis as they just don't understand about PEs etc.

If a person knows they get anxious/scared about certain topics (they usually know) there's something another forum suggests:
SOB

No, it's not shortness of breath, as used here but:

Scroll On By

(I'm too nosy, so that doesn't work for me (grin) but I'm also not anxious about many things.)

"Many of us here have been undiagnosed after going to a doctor or the ER until the symptoms are so severe as to almost kill us"

Yes. This happened to me as well.
.
"We are trying to bring awareness to the disorder so doctors test us sooner. Having news of famous people with PE I think can help."

I'm confused by this. Bring awareness to who? We're a group of PE survivors, no? So, I'd say we're pretty aware as I'm speaking strictly to, "hey look, another person who died of this!" links that are posted. That was what I took issue with, personally. I'm not demanding that anyone change how they post, but I wanted to reach out to others who needed the support similar to what I seek - which includes not obsessing over the fact that it might have killed me or might kill me yet which is the thought pattern that is triggered when I read about those that have died from this.

And I know I'm reacting from a highly emotional place with all of this. I wish I could be more rational and relaxed. Every move I make is laced with thoughts of death and its honestly making living really miserable. So I guess when I pop on here and one of the first things I see (when this was originally posted) is - Found another PE Fatality" it hit like a ton of bricks and made me genuinely afraid to come back because I just wasn't in a place to see that. Not anyone's fault. I just was a little hurt that in initially expressing that anxiety it was suggested I was wrong to feel that way - "you need to read both sides" - "what about those who need support for their loved ones passing" - "You may be, since you're the only one who has so far, in this thread."

Yeah I wasn't real clear on the bringing awareness slant with this example either but really, that's not up to us to pick apart I suppose since that's not the real crux of what we're talking about now at this point.

I love this quote by Martha Graham: What people in the world think of you is really none of your business. I have to think hard about that some times when people rub me the wrong way or if I give too much credence to what they say or if I flat out disagree with them. I don't think you need to defend your feelings or justify them. They're your feelings after all. So don't take what others say, myself included, as anything more than what it is, people talking and sharing their thoughts from their own point of view. And I assume that people would do the same if you said something that they didn't get or didn't like.

And I know you didn't ask for advice but... the anxiety is going to rob you blind. I hope you're addressing it outside of this group, with a professional, either your doc or a therapist, or using some kind of techniques to help you through it. I say this as someone who experienced panic attacks and anxiety through the roof about a month after my PE. It completely blindsided me and it was something I'd never experienced before so I had no idea how to get my arms around it. I sought help and it was the best thing I ever did for myself. You have the good fortune to survive a PE so the time spent worrying about being killed, what MAY happen etc is time you take away from today your family, your friends and from your own peace of mind.

Thanks for your thoughtful response rmb. I really appreciated it.

I am in treatment for my anxiety and on meds. I don't know if it'll just take more time further out from dx to calm down, or what. I hope that by this time next year I feel differently. :/

It's reassuring to me to see that other people are as anxious about this as I am. I am on warfarin now, but in another month or so, they're likely to stop, since I'll be six months post-PE. During those months, I've come across people dying from anti-coagulant related bleeds (which scares me worse than anything) and, actually, while I was in the hospital just a day or so post-PE diagnosis, an actor died of PE and it was all over the news. It can be upsetting, but it's also the reality of our situation, post-PE. We're kind of fragile now, and sometimes I can lose sight of that. So, yes, it can be upsetting to read about, but it can also be bit grounding.