holy ****!!! (scared out of my mind)

[Debbie]

morgan

morgan

Dear Morgan, I have a 21yr. old and it's not always easy growing up and you have the whole heart problem to deal with on top of that!! Take care and tommarrow will be a new day and probally a better one. Debbie

 

[Guest]

Morgan,

Aye ... very sorry about what all you are going through right now....

You already know ... thoughts/prayers are on their way....



Cort:34swm."Mr Monte Carlo.Mr Road Trip".pig valve&pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Sometimes it seems like this world's closing in on me" ... Bad English ... 'When I See You Smile'

 

[Karlynn]

You had "a day", that's for sure. Maybe your only response to your Dad and sister is "You have no idea what you're talking about. I'd be happy to take you to see my doctor so he can explain my situation to you. If you don't want to do this, then please don't make any more comments to me regarding this issue."

My husband was in big denial when I began to have severe issues. He thought I was just being a baby, or being lazy or over-blowing things. I finally had him start going to my appointments with me. There were times when he first started going when I'd question the doctor saying "My husband thinks this....." I knew that if I didn't bring up the issues that my husband had problems with, that he wouldn't and he wasn't believing me, so my only chance was to get him to believe the doctor. I know his feelings were based on his fear. It was easier for him to be an ostrich with his head in the sand than to see what was really happening because it was scary for him.

If you Dad won't go, maybe have the doctor write the note for work, and then show it to your Dad.

If that doesn't help - you need to set rules for what your Dad and sister are allowed to say to you regarding this. Just walk out of the room and leave their remarks in the room with them.

 

[Trinityheart8891]

hey guys

I just wanted to thank everyone for the support, I am in a better place this morning, just really tired, I'm kinda emotionally burned out right now, and I think that is making me really tired too. . .

al
my cardio didnt put me on lasix because I am not really retaining fluid, also I have real issues with low BP/getting light headded/having passed out once, I am assuming that he didnt even consider lasix because it would really exacerbate these issues by reducing my circulating blood volume, in particular, he encouraged me to keep really hydrated, and eat plenty of salt. My mitral valve issues arent typical, my BP gets "soft" when I exercise (systolic should go up, diastolic should go down, my systolic doesnt move much, and since my muscles are asking for blood less gets to my brain, and it goes downhill from there, my BP also goes down when I get too hot, stand up too quick, or stand up for to long, usually if I am getting short of breath I am also getting light headded), and I guess my aortic valve probably doesnt help things. yes, lasix would probably help with the extra fluid in my lungs causing my shortness of breath (blood backing up into my lungs causing a restrictive defect pattern), but it would exacerbate my low BP thing (eh, what a choice, LOL, do I wanna stay on my feet, or be able to not be short of breath)



bottom line is that I wish there was something practical they could do right now, but there isnt. interventions would be kind of drastic cause my valves are still pretty mild, so I guess I just gotta learn to cope with things. Its pretty frustrating being a 21 yr old, and having to deal with this stuff, my cardio really doesnt seem to like that I am working 2 jobs on top of school, he really wants me to back off from that, but understands that I have to pay the bills. he says that things should be better when I get done school when I only need to work one job, and I have a decent schedule and good benefits and stuff, I agree, we both agree that I just need to get through this, and things will get better

thanks for the advice though

I really wish there was something else, but I dont think there is anything just yet

any other advice would be appreciated, I am definitely gonna talk to my counselor about this. . .

uggh

thanks
later
Morgan, 21

 

[njean]

Dear Morgan,

I remember as a young girl, my family too thought I was being lazy when I said I was too tired or couldn't do what I was asked to do. In fact, since my heart condition did not reveal itself until I came down with rheumatic fever at the age of 22, I didn't even know "why" I was always tired & unable to do some things. Back when I was a kid, a lot of parents couldn't afford to take their children to the doctor & home remedies were used instead. Sadly, however, in my case, when I had my first OHS the surgeon said that I was most likely born without one of my valves; that it had been a miracle that I had made it through my childhood at all! When I came down with rheumatic fever, which was caused by a neglected sore throat that turned into strep throat & then rheumatic fever; this whole episode triggered the bad state that my heart was in & had been, throughout my growing up years without anyone, including me, knowing! So, I guess it was a blessing in disguise, that the rheumatic fever happened or I could have dropped dead at any time!

I'm so sorry that you Dad & sister don't comprehend your state of health or lack of it & I wish for your sake that things could be different for you. Being sad or upset does not help you at all & I wish they could understand this. Is there anyway you could go live with your Mom??

Hang in there & take care of yourself first! Best wishes!

 

[frank10b]

You are a power onto yourself, dont let anyone get you down. It is an amazing moment when you realize that you are stronger and greater than your parents and yet you can still love them despite all their faults and weaknesses. Besides who wants the go out and have to do physical work anymore anyways all the big money is made by people who spend all day on the telephone or computer while relaxing in a big office chair giving orders to others!

 

[Shone'sGirl]

Hey Morgan,

I totally know what you're going through. I'm 21, too, and I'm getting a defibrillator and having to miss class and everything sucks. I'm totally with you on the anger thing. Heart stuff always makes me angry and I feel like breaking stuff all the time.

I'm sorry that your dad and sister aren't supportive. No one understands what we go through and that's the worst part. I hope things get better and feel free to message me--I'd love to chat!

-Clare

P.S. Do you have Shone's Syndrome, cause we have a lot of the same heart problems and repairs?

 

[strawberry]

I don't post much but I do check in from time to time. You have an amazing amount of support here...and with your healthcare providors. I don't know your Dad or anything about him but some of the things you have quoted make him seem abusive. People mean really well when they suggest you take him to appointments, or show him results, but I have been in an emotionally abusive marriage and learned that that won't work. Abusers find what they can to abuse. They want power over you and no matter what you do, they will find a reason to do so. I used to cook, clean, anything to get my hubby not to criticize me until I realized it had nothing to do with any of those things. My best advice would be to let him know as long as he is not supported, you will look elsewhere for support...and do it. Try and ignore him. I know it's hard...but if you can let down your expectations of support from him and remember all your others you may feel better. And I know it sux to not have a supportive Dad...but you can't change him. Hugs