heya jut a question

[purple_ness1]

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[Lisa Salberg]

Margie,

No lecture here but you need to know that drinking and HCM in itself can be a problem. The drinks open up your blood vessels and you have no blood to fill the with.

Drinking causes dehydration, it can also cause arrythmias and cardiac shock. The smoking is a minor issue in comparision - but something that should be avoided as it can increase your heart rate.

In short my dear - stick to one drink and cut out the cigs. You will feel better and enjoy yourself more!

Lisa

[Sarah]

Margie,

Drinking alcohol is like inserting a faucet and letting all the water run out of your body. Dehydrating is the worst thign for HCM--whenever I"ve gotten drunk, it would mess up my heart more than anything else.

If you are going to drink, you need to have 8oz of plain water (not juice or milk or anything thick) for every 4oz of alcohol. A shot is 1oz; a mixed drink is usually 4-6 oz unless you are getting some hat-sized margaritas.

Now, I just carry a drink that looks like a drink, but is non-alcoholic (pre-made margarita or pina colada mix without the alcohol is great for this). This way, no one can get on my case for not drinking since it looks just the same.

S

[purple_ness1]

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[Reenie]

Margie, I'm not going to lecture, but you are going down a very bad path. It's a bad path even if you don't have a heart condition, but with your problems it's downright dangerous.

Reenie

[purple_ness1]

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[Toogoofy317]

Margi,

I know how you feel on resenting this disease. I'm on my fourth career now because of it and I'm only 24! I have also tried that I'm only gonna live once attitude and boy all it did was land me in ICU a few times. That is not a place you want to be trust me. I am finally coming to the realization that I can still have a pretty decent life if I accept what I have and do what I can with it. This has been my biggest obstacle. A friend told me that I should build my fence and stay within my boundaries. Which makes sense. I will not allow my cardiologist or anyone for that manner tell me what I can or cannot do. They do not live my life I do. But, if I realize my own boundaries then I am accomplishing what I need to do verses what I want to do.

Have been able to do this on my own? NO. I have had lots of help along the way which is what seems like you need now. Don't be afraid to ask! If you ever need to talk PM. I'm young too and know what it is like to have to deal with school and social life with so many limitations.

Mary s.

[Lisa Salberg]

I know this is the "hang out" but I am going to call on those who were diagnosed under the age of 21 and are now over the age of 28 to share some stories of how you felt about life at the time of your diagnosis, through your teens and now.

I will start....

I was NO angel as a teen. I did things that were outright dangerous and I had a poor attitude toward school. I like many with HCM and young felt as if I was going to be cheated out of a future - therefore all rules were suspended and I would live by my own set of rules. Mind you I was not a terror by any stretch but I was also not the 'good little girl' either.

As I got older something hit me - it was not at once, it came over time. It came after I woke up day after day and went to sleep night after night... I was still alive. I was not only alive I felt pretty good. Time to rethink the plan.

Then I got really sick when I was 22, I had a stroke and had endocarditis. I was the closest I ever came to really not making it. When I recovered I was shocked at all the time I wasted with the thoughts that I was not going to have a future. I took some time to learn about all I should do for myself and I took a new position on living - I rather enjoy it so I am going to do whatever I can so that I can be here for as long as possible.


Since then I have become a mom, have had a great career, started the HCMA, met so many wonderful people and have done what I can do to make this world a better place. A few nights of partys or a lifetime of wonders... looking back I would take the lifetime hands down.

That my take on life with HCM - diagnosed at age 12.

Best to all!
Lisa

[Reenie]

I don't have HCM but did have a heart condition as a teen. I took a very different approach than most teens do. My main problem was that my heart would start racing - sometimes uncontrollably - and I would feel really bad. Sometimes you could actually watch my shirt move with the heartbeats. That's pretty scary for a kid!

I decided that the best thing to do was to take my medicine like a good girl so I didn't feel quite so crappy all the time and to listen to my body and my doctor. I never partied or smoked or anything because I knew that if I didn't feel too good without that stuff in my system, how on earth would it make me feel any better? I certainly wasn't an angel, but I wasn't a devil child who kept my parents guessing if I'd be all right every time I walked out the door.

Now that I'm older I don't feel bad at all. I was able to have an operation about 2 years ago and I don't have the episodes of tachycardia any more. I still don't drink because it still makes me feel bad and I never smoked.

I always had my eye on the bigger picture, to still be here tomorrow. Partying for the moment wasn't in my plans.

Reenie

[purple_ness1]

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[Reenie]

There are many steps to accepting a chronic illness and anger is one of them. You're still at that stage. Most people wish at some time that they didn't know they had HCM. Then they could live their lives the way they want and not worry about things. The thing is that you DO know. Now you have to make choices that can help you live with HCM, not despite HCM.

Reenie

[Sarah]

Margie,

Why? Why take care of yourself? Well, life actually gets better. It may be hard to believe, but it really and truly does--even with HCM. The stuff that matters to you now, won't matter so much later.

You may be very angry about HCM for a long time. But there is SO much in life you can still do -and I think will do- that I think someday you may feel better about having HCM, as hard as that is to believe.

As long as you listen to your body (sit if you feel dizzy, stop drinking if it makes you sick, etc), it will reward you with more energy and ability now and later.

Drink tons of water, take a multivitamin (it isn't possible to get what you need from food alone--especially if you eat like i ate in high school--ho-ho's, french fries and fruit punch for lunch every day!), and don't push yourself in sports.

What do you want to do (besides party and team sports) that you don't think you can do?

Sarah

[purple_ness1]

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[Lisa Salberg]

A few thoughts for you -

This may come a surprise to you but we all hate HCM! Just because we talk about it a great deal and just because we have learned to live with it does not mean we call this thing HCM our "friend". I will let you in on a little secret .... I think I am really the President of the "WE HATE HCM CLUB".

The other secret is this - "know thy enemy". There is an old expression "keep your friends close and your enemies closer". If you do then you can anticipate its next move and be prepared.

Lastly, peer pressure really stinks and I can not tell you strongly enough that real friends will not judge you on what you do they will appreciate you for who you are. Sometimes we have "friends" that are really not good for us and really are not 'friends' they are people we know and hang with but who do not show us much respect. Look closely to those around you - those who would judge you based on 'if you drink' - ask yourself is this really a friend? You may pleasantly surprised to find out that if you tell them your heart feels bad when you party too much they will encourage you to do what is best for your health. Further, have you ever stopped to think of what might happen if you over do it and what your friends may have to deal with? I am going to be blunt here - what if you passed out while drinking/other things with these friends - are they going to get you the help you need to stay alive or are they going to keep the party rolling and worry that if they tell anyone that you are ill they may get in trouble for doing things they should not be doing.

I look forward to knowing you for many many years to come - how about you take care of YOU so we can all see what a wonderful young lady you can become?

Big hugs|

Lisa

[purple_ness1]

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[purple_ness1]

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[Reenie]

Hi Margie. I'm glad that Lisa's post got you thinking. I just want to add one thing about telling your friends about your HCM. They won't understand until you teach them what it is. Most people, even adults, think of heart conditions as something caused by how much you weigh or what you eat. It's up to you to teach them that what you have is caused by a gene in your DNA being messed up, and that it's been that way since you were born. They will understand if you're patient enough to teach them. Take care.

Reenie

[purple_ness1]

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[Lisa Salberg]

Margie,

Lets take this one step at a time. You have taken so much energy to hate your HCM and now you are going through the process of dealing with your HCM YOURSELF. Let yourself do that for a while. In time you will be able to share the information with others - but right now no matter what anyone says to you regardless of how caring they try to be I doubt it will ever be the right thing and thereby only make you frustrated.

I am so proud of your maturity and your willingness to cut back on the drinking. Kiddo take it one step at a time and in a few weeks you will look back on your life and be proud of yourself for the changes!

I am very glad that we are able to be here to help you and please know you can count on us for support. AND if you ever need to get out some of that frustration toward HCM - WE all UNDERSTAND and are happy to talk it out with you.

BIG HUGS!
Lisa

[wonder_woman84]

It helps to sit and chill when your smoking, or atleast I have noticed that with my experiences.

[Sarah]

The only person at school who needs to know about your HCM would be the nurse so that if you ever did need help at school, they wouldn't be totatlly clueless.

You can just give them this web site address if they have questions.

As for your friends, yeah, most of them are not going to get it. My husband didn't even get it. He's not my husband any more! (I'm not suggesting dumping your friends, I'm just saying, this HCM crud is hard even for "adults").

Be good to yourself.

S

[Toogoofy317]

curious as to why you deleted all of your questions out. They weren't bad. And another person could really learn from them.


Mary S.

[purple_ness1]

heya

yeah ur right sumone could learn from they
and i know they werent bad
i pm u and explan

*m*