Why are my questions not answered here

I posted yesterday about living a normal life with icd and haven't gotten any feedback. I stopped posting here for a while because I don't get answers .
Lisa

6 Comments

Lisa

by IAN MC - 2016-02-24 11:02:10

Out of curiosity , I have looked at your history of asking questions on here. You have almost always had replies, some very helpful..

You seem to not believe in acknowledging those replies . You appear to have never thanked people for their replies.

Do you mind telling me "why?"

Thanks in advance

Ian

Questions

by Grateful Heart - 2016-02-24 11:02:54


I know I've answered you a few times. Sometimes a post goes unanswered if we don't have a good answer or some personal experience/ knowledge. You said you've been shocked 43 times. That is not typical and must be a horrible experience.

I was hoping a few would come along who have been shocked and say something. I have never been shocked yet so I can't offer advice on something I have not experienced. Your last question, a few posts down from this one is "how do you go on?" You go on because you have to....what is your other choice? If I was shocked 43 times in one day I would be a wreck. Yep, I can hear my doctors laughing now.

We have advised you in the past to seek professional help if you feel you need it. Of course we want to help but we don't have all the answers (although some think they do). Ask questions here but be more specific.

We're on your side...you have all our empathy....but we just don't know it all.

Grateful Heart

Baby Steps Lisa

by Grateful Heart - 2016-02-25 03:02:49


It sounds like you are taking them....good for you. Give yourself some credit and don't be so hard on yourself....you have been through a lot.

You are seeing a therapist....a very important step for you.

You said the ablation was successful in December. Take that as a positive to move forward if you have not been shocked since.

My Bi-Vent ICD was implanted 7 years ago. I did not know about this site or anyone who had a device so I had no one to ask about my concerns and I wasn't going to bother calling doctors with my questions. My husband and 4 sons (in their teens to early 20's at the time) were very supportive but did not have answers so I decided I had to help myself. I knew I had to be here for my family and I had to function for my family.

We are sent home from the hospital with these devices and very little information or support....especially if we have a shocking device. That is not to say that we are not grateful.....we are!! But we are left on our own to learn and gather knowledge or stick our heads in the sand.....our choice.

It's all very "routine" to the doctors and nurses......that is.....until they have one themselves. I have seen quite a few nurses and doctors "freak out" on this site after being newly implanted or being told they need one...admitting that they never "got" the patient side of it. That is not to disparage doctors or nurses or the life savers they are. But...they are human with fears and concerns when it happens to them just like everyone else. My point is there should be more support for PM/ ICD/ CRT patients who would want and benefit from it, especially in the beginning. Proven by the fact that the doctors and nurses come to this site with questions and concerns when they become the patient.

My point to you Lisa is you have to help yourself. We are here for you but it is you that has to take the steps needed. I asked my Cardio if I could go to Cardiac Rehab. I read about it somewhere....no one ever mentioned it to me. I called them and they explained I would need a referral from my doctor...thank God he agreed. It is an exercise program where you exercise on machines at your own pace under the watchful eye of a Nurse and an Exercise Physiologist. It is in a group setting and every 5 minutes or so you switch to another machine. They made it fun! My thinking was if I was going to drop to the floor....that was the place to be, surrounded by nurses and a crash cart. So I exercised as fast and hard as I could 3 times a week for months. I looked at it like a doctors appointment and I think I missed only 1 because I was sick. Now I go to a gym on my own. I would never have attempted that without Cardiac Rehab first. We are all different but that is the best advice I can offer someone in your position to get your life back.

So dig down deep Lisa and take that first step. You'll be glad you did.

Feel free to private message me if you want.

Grateful Heart

I'm sorry

by Lisamaruna - 2016-02-25 06:02:56

I am sorry and yes I realize I don't always thank or respond back. I am seeing a therapist and taking an anti anxiety med. I guess I was just desperate to have someone tell me it's gonna be ok. I had a terrible day today feeling all kinds of activity from my heart and feeling dizzy and crappy. I do love that this website is here.
Today was a bad day. Seeing me not able to get on with life and my kids and the house is a huge mess I am just not a happy camper. I feel life a failure to my spouse and kids. I feel like I am never going to get better or have a normal life.
Lisa

one day at a time

by Tracey_E - 2016-02-25 12:02:00

Some of your posts seem more like a statement than a question or request for support, so I tend to read and move on. Others, I just don't have any experience. I don't have an icd and have never been shocked. If you ever just want to chat, feel free to post that.

It's hard to cope when it feels like everything is out of control around us. You are not a failure to your family, they are probably more worried about you than looking at the state of the house. Seeing a therapist is a great start.

Is there someone you can ask to help out around the house? We all have those friends who say call if we need anything, yet when we need something we don't speak up. But if roles were reversed and it was the friend in need, we would happily go clean up the kitchen or fold the laundry if it helped her. So, go ahead and ask. Or take a walk or go out for lunch with the girls or get a mani/pedi. Do something normal that makes you feel good, baby steps. There's always a light at the end of the tunnel, but sometimes it's harder to see than other times. Sometimes things get back to normal, other times we have to adjust to a new normal. We've all been there.

Response

by Good Dog - 2016-02-25 12:02:59

I too did not respond, because I could not identify with your problems. The shocks I mean. Having anxiety and a bad day; yes, I can identify with that.

I know it is difficult at times. I feel bad for what you have gone through. I can tell you that I have found that if we try to keep positive, things always get better. Eventually, your house will get cleaned up.
You have to continue to follow-up with your doctor until you are confident that he has done everything that he can to best address your problem. It is also important to fully understand what is going on. If you don't, you need to ask enough questions until you do.
Instead of being distressed over our medical condition, it is important to see the positive in the care we have been given. Sometimes easier said than done, but we have to keep trying.
Bottom line; It isn't the adversity that determines the quality of our life, it is how we deal with it. Sometimes it is a battle to maintain a positive attitude, but it is a battle we should never give up on.
Sincerely,
David

You know you're wired when...

You have a shocking personality.

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