trying to keep living

iVillage Member
Registered: 04-15-2003
trying to keep living
3
Mon, 09-29-2003 - 12:01am
I contantly think about the worst case senerio I have two small children and there is a good possibility that I would be there to see them grow up. I have all my ducks in a row and try to spend everyday making memories but every time I go to the doctor I feel like leaving that office it takes awat 20% of my life. you see I have cardiomyopathy and I have now gone through several meds that didn't work. and everytime I hear that it didn't workI get obsessed with death. how do I go on living for my children????
Avatar for themummy2001
iVillage Member
Registered: 07-03-2003
Tue, 09-30-2003 - 9:15am
Hi, Amys Nap......and welcome to the board!

Have you talked with your cardiologist about feeling so "down"? You might want to do that! You could have a bit of depression going on, along with the cardiomyopathy and the meds not working (enough to make ANYONE feel depressed!), and perhaps you could ask your cardio about talking with someone who specializes in folks with cardiac problems (there are many therapists who deal SOLELY with cardiac patients!). Maybe talking with a professional about your "down" feelings, and possibly meds to counter-act those feelings of depression and fear might help? Wouldn't hurt to let the cardio know that you're feeling so scared and blue, Hon!

Let us know how you're doing.....and hang in there, Hon! Just try for one day at a time, and live life to the fullest, you know? No one is guaranteed a long, healthy life....but we can ALL make the best of whatever hand we're dealt in this life! Talking to someone who'll be able to REALLY help (perhaps a therapist?) wouldn't be a bad option for you, I think!

Post often with updates, okay? How old are your kids? How long have you been diagnosed with cardiomyopathy? Which meds didn't work for you? Let us know.......we're here, we care, and we'll always listen!

Welcoming (((hugs))),

Linda.

iVillage Member
Registered: 04-15-2003
Sat, 10-04-2003 - 10:56pm
Thank you so much for your words of support but I feel that you got the wrong impression. I am planning for the worst case senerio in case it happens. I am not depressed I feel as though I have come to terms will my illness and that is what will happen I can't say when but I want to make sure that all my ducks are in a row for when. And I am making the people around me sick of hearing about it like I said eariler its more of an obsession not depression. You know the setting up makeing sure that my husband and children are financially secure. Makeing sure that the women friends I have in my life know the roll that I want them to play in the end... etc etc... And through all of this I have been seeing a phy that deals strictly with terminal patients and there families learning to cope. I am trying to make the most memories with my girls and my family. but I happen to be a very blunt and direct person and am able to push my emotions asside to deal with what needs to be done and that scares people off because of it.

To answer you questions my children are 2 and 5 both girls and I was diagnosed in May when my weight dropped to 82 lbs. I was sure I was going crazy and called doctor for phy referral and he took so blood just to make sure and called to tell me that I wasn't going crazy I was sick then he did extension test and that was the diagnosis and the referred me to a cardio and he ran his own tests to verify and all came out correct. I was told that there are 5 meds that can assist and I am now on the 4th of the 5 meds only one more to go but there is good news the last medication I was on I am still taking because in the 60 days of taking it my weight improved and they didn't see any advancing on the damage. They tried upping the dosage but that didn't work so now they are trying a mixture of two. Please forgive me I purposing don't pay attention to the names because then I would look them up on the internet which would give me a little knowledge and I would then get scared. So in order to keep my emotions in check, you know what they say a little knowledge will kill you LOL... I am just kidding... Anyway I am taking lexapro just to keep me cool and collective along with carring valumn just in case my life get stressful. I am seeing a therapist like I said before and he seems to think this is normal for someone who is going through this is part of coping.

Again I really appreciate you kind words of support and it is nice to know that someone is out there and actually understands. thank you.
Avatar for themummy2001
iVillage Member
Registered: 07-03-2003
Tue, 10-07-2003 - 7:57pm
Hi, Amys Nap.....

Yes, I guess I really DIDN'T understand all that was going on....I apologize, Hon....I'm sorry! Since you're seeing a therapist, and are getting your "ducks in a row"....will you let me make a couple of suggestions? Since your children are so young, how about making a video-tape journal for them? Make one entry a day for each child (separate tapes, maybe?)...... just letting them know how much you love them and what's going on with your medical condition....when they're older, they'll be able to understand much more! Also, have you thought about making a video for your DH (and other family members too)? Also, have you started a written journal? Sometimes this can be good for dealing with YOUR feelings, and it can explain those feelings to others later on (MUCH later on, I hope!). I think it WOULD be easy to get obsessive about things right now....you're a young woman faced with a lousy situation that's not in any way in your control.....so you need to be absolutely certain that things are going to be okay later....I think that would be pretty normal! I'm keeping you in my thoughts and prayers, and I also hope that the combination of meds is doing remarkable things to help you live your life to the fullest! Yes, continue to make memories with your family.....it's important to do that whether we're perfectly healthy or facing a terminal illness! But, record those memories as well (video-tape and written words) so that later on, those memories can be as fresh as when they actually happened, you know? Good luck, Hon....keep posting and letting us know how you're doing, okay? Hang in there, Hon....and live every day the best way you know how! We ALL should do that.....even if we're healthy! Sometimes people forget that life can be shorter than we'd like....and that every day is to be LIVED, not just "gotten through"! Sending positive thoughts and hugs to you and your family!

Love and (((hugs))),

Linda.