How to tell friends.

[Penguins57]

So, right now, the surgery looks like what I'm going to have to try...
How did you guys tell all your friends?
I don't wanna worry them...but I want them to know whats going on...
Plus I want them to come see me at the hospital...
Should I wait?
Advise please!

[Penguins57]

Thanks for the advice.  I look into the bracelet. (:

[Shane99]

Just don't make yourself any sicker by over-doing it.

The best ideas a saw listed were; Make a lot of copies of the poem and lots of copies of a basic primer sheet. Take one of each to your place of employment, your church, etc. Let those that know you, know this. And always have a couple on hand with you.

It's also not a bad idea to get an emergency braclet listing that you have Chairi and Syringomyelia . . . or whatever you might have. At the very least have a copy in your wallet.

[Penguins57]

Practicing is getting harder and harder everyday...
I feel my body getting weaker and just ehh.
But I won't give up until the day I get my surgery.
But thanks. (:

[*Stormy*]

Just wanted to say...good for you!! It is a difficult thing to do but I'm sure that you feel a weight has been lifted off. Now I hope you will get some more support from people around you...
Be careful when you are practicing....the best thing to do now is to try and prevent the things that trigger your symptoms

Keep on trucking (or is that trekking? lol Selma )

Carolyn

[Penguins57]

Im happy I told them,
because today after practice i kinda fell and was just sitting there cause my head hurt so bad. and they all knew what was happening so they came over and was trynna help me. I was happy.

[selmaS]

I am so happy for u that u have that behind u and u can focus on what is ahead....

It is great to have that added support.....

"selma"

[Penguins57]

I told my track team today and almost started balling my eyes out.
It felt good to get it off of my chest.
They were all supportive too. They came up and gave me hugs and I saw a few girls almost cry too.
So I'm glad I told them.
At least for now.

[Penguins57]

Thanks. I think I'll give it a try and let you guys know how it works! (:

[selmaS]

It has to be ur decision....and I can not tell u, just do not let it upset u if they don't understand.....and tell them what u feel allows u to feel better about the situation.

U can't make them understand ...only present the info.


Good Luck
"selma"

[Penguins57]

I guess that is true.
But still my hearts telling me to tell the whole team and so then at least they all know.
And then they can think whatever they want with the info. but as long as I make the effort to make them understand?
I dont really kno...

[selmaS]

If it were me, I would let my closer friends know, and with how everyone talks I am sure it will get around, if it is the info u want remains to be seen...and even if u try to explain, people hear what they want ...so u can not control what they will think....and this will only give u added stress.

So, if it were me or my child, I would say tell ur closest friends and no worries what the others think....just let them know u have a medical condition that does not allow u to be as active and leave it there....

So many of us adults can not get family and our peers to understand, so do not expect that as u will only be disappointed  .....we all have a hard time finding a dr that understands this, so y do we expect family and friends to?


Good luck

"selma"

[Penguins57]

I loved the poem.
The youtube videos I don't think explained it how I want it to be explained.
So I'ma try to work on something.
I feel like I should tell my whole track team wats going on...since I keep missing track meets and I don't want them just thinkin I'm skipping practice and can get away with it...
What do you guys think I should do?

[selmaS]

U may also want to print out the Poem at the top by Dr Oro...

[Penguins57]

Thanks so much for the information, Especially the youtube videos (:
I'll be sure to watch em!

[*Stormy*]

Another good idea is if you have Facebook..post a video about Chiari and the surgery. I found several good ones on YouTube...
Sometimes it is hard to get the words out (with our foggy brains) to explain what is being done so why not let someone else do it for you?

This is a video I posted to help people understand...it is a great one that shows the herniation as well as explains the suffering that goes along with it:
http://www.youtube.com/watch?v=hRPrMsAVoLQ

This one gives a very good idea of what the CM looks like and goes into the surgery details too without being graphic:
http://www.youtube.com/watch?v=T2uN6zDsV50

I included this one too which was done by a girl who dealt with symptoms throughout her school life and it is really heartwarming..I thought you might relate to some of it..I know I do!
http://www.youtube.com/watch?v=fk3vxonpYmw

Better yet..you should get your parents to watch these too!!
Hope this helps!
Carolyn

[rod44]

Why not bring them on here and they can learn about Chiari. You could print out some info on CM off the internet so they can get a better understanding of your illness. Educating them is the best option so they can better understand your condition.

Ray