emotions

May 31, 2001

Thank you for your comments Beth. Thankfully my therapist thinks like you -

and I am working with him and my group therapy to try and get through my

feelings. I wish I had a local group for young people that have medical

conditons - but I haven't been able to find one. The current group I am in

is made up of folks my parents age and mostly going through divorces - so

its not the best suited group for me - but they are wonderful and helpful

for me.

I will check out these books you mention.

>From: EAYSRM@... Reply- To:

> Subject: Re: Emotions Date: Thu, 31 May

>2001 10:55:17 EDT

>

>Hi folks,

>

>I am a Licensed Clinical Social Worker who was implanted at 39 with an AICD

>due to V-Tach Torsades type. I am 42 now and have had time to look at my

>life and make decisions to do what I think is best and what I really want

>to do. That was to go into private practice. Now I am so busy, I cannot get

>to the Tuesday AM meeting or the one on Thurs PM. My thoughts are always

>with my zapper buddies.

>

>When I first was implanted, I experienced all the emotions that we all do

>when faced with grief and loss. At first I was frightened to go to sleep,

>then angry I couldn't drive or do the things I used to be able to do, etc.

>I am three years post dropping over and I have done things and experienced

>life more abundantly as every day has been a gift. (I still experience up

>and down emotions and not everything is perfect). Yet, I have and the

>opportunity for another chance.

>

>To the point: Everyone needs to express their emotions. We will all go

>through many stages of grief and loss. It is normal to be fearful, happy,

>angry and all of the above separately or together. Do not feel bad about

>expressing yourself and it is more than: AICD alive with it and dead

>without it. By discounting other zapmates feelings, we lose the essence of

>why we are a part of this , the Zapper, or any other support group.

>

>There are many books available for us:

>

>Two are: Heartmates by Levin &

>

>Necessary Losses (Sorry, I cannot remember the Author's name and the book

>is not close at hand).

>

>You will feel much differently as time really does heal.

>

>Take care!

>

>Beth York (Bloomington, Indiana)

>

_________________________________________________________________

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May 31, 2001

I agree and disagree.

I lost a promised introduction in the real world in the last few years ( I

know boo hoo LOL). I had my first fainting spell at age 11 - my brother was

doing his best to scare me by trying to drown me in a lake(boy was he in for

a surprise!), and the second (that I can recall)at age 14. It just so

happens that that was the year that I developed seizures - heart related or

not is unknown. They were very infrequent until I was in college my first

year - then they became so bad that I had to drop out. Then the ICD came 2

years later. Instead of working as a High School Music Teacher with a

double major in Clarinet/Piano - I am a secretary making $11 an hour (which

in MA isn't great), which I don't enjoy. I am going back to college

(nights), but only because my work has tuition reimbursement, and for

something completely unrelated (computer programming), but will yield good

pay - as that is my only focus in life now.

I don't appreciate being told that my feelings are not valid - they are.

For as long as they are around I will only look at this particular situation

with pain and disappointment. If you were to meet me in person I am a very

upbeat, pleasant person - I just hide things very well. I'm not depressed

(according to some doctor), just dealing with this situation as naturally as

possible.

I appreciate everyones help, really I do. I enjoy this group and it really

has been helping me through this. As a matter of fact I bring alot of my

experiences here to my group therapy and private therapy sessions, and many

of them agree with you guys.

>From: AMAmail@...

>Reply-

>

>Subject: Re: Emotions

>Date: Thu, 31 May 2001 16:30:08 -0000

>

> Do not feel bad about

> > expressing yourself and it is more than: AICD alive with it and

>dead

>without it. By discounting other zapmates feelings, we lose the

>essence of why we are a part of this , the Zapper, or any

>other

>support group.

>

>Actualy, it is AICD alive with it and dead without it. Its great to

>talk about how bad, how painful, and mainly, how new the situation

>is.

>All of us have been through the adjustment, the loses and the further

>problems. Its natural to object, to complain and feel sorry.

>

>Im not some fool who woke with an ICD and said " Isnt this wonderful " ,

>

>In fact, I am the poor sap who has lost almost everything. Not only

>health, but income, physical, mental, neuro, dreams, future amd past

>(I have 25 years of amnesia:)

>

>I spent two years in the depression from heart damage, AICD

>adjustment, Loss of self and brain damage and rehab. I have seen

>some

>dark sides. The grieving for what was, is normal and healthy. But

>you cannot let it get away from you or doom you to a life of

>unhappieness. I know that is a tall order, but it is also a deep pit.

>

>I believe that most doctors are not trained to realy tell the story

>about AICDs and what they mean. Sure the basic is AICD alive with it

>and dead without it, but there is so much more to fear than death.

>Rarely do they express the fact that a huge part of heart attack and

>arrythmia is a fried brain. SOmetimes worse than dieing, I have a

>brain injured friend who chose last week that it was worse than

>dieing, and she ended it with a gun.

>

>The AICD, protects you from the heart stopage and the anoxic brain

>damage and coma. It reduces the risk of arrythmia induced clots and

>stroke. It helps to prevent things from becoming worse. they rarely

>tell you that part.

>

>There is nothing wrong with saying the AICD is a real pain (no pun)

>But you really have got to look at what life would be without it.

>Dead? Crippled, Vegatable, Blind. These things do some stuff, though

>not in the plesantest manner.

>

>But the risk of depression taking over. Wow, easily done, destroy a

>life. I dont believe it is the job of those whohave lived with the

>darkness to encoourage others to walk that same path. I will hold

>your hand, wipe your tears and put my arms around you, but I will

>also point to the horizon under those clouds and say " It gets better

>over

>there "

>

>Keep on those doctors for what is the next step. Get another

>opinion,

>Puut the same effort into getting youself fixed as you do to get your

>car fixed. First shop cant do it, go to the next.

>

>Steve .................

>

_________________________________________________________________

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May 31, 2001

> I agree and disagree.

> I don't appreciate being told that my feelings are not valid - they

are.

> For as long as they are around I will only look at this particular

situation

> with pain and disappointment.

Now that is very normal and what all people do. You cannot help but

grieve for what is lost and wonder what may have been. But no matter

how hard it may be, you are stuck moving on. Ya just cant sit there,

luckily most people dont seem to.

What surprizes me though, are those that have such difficuly

accepting the AICD. I think that is what I have been trying to say.

Yes, its inconvient, yes, its uncomfortable, yes, we would rather not

need it.

But wow, what a gift! 20 years ago, this would not be happening, we

would not be talking, we would no longer be here. What magic!! We

can live and see tomorrow. Wow! Sure, there is a price to pay, zaps,

the unknown, medicines, tests ...... But Wow! ...... We will be here

tomorrow. All because of this " Cool Tool " they stuck in us.

It is so sad to watch someone paint themselves into a small corner of

life because of the inconviences caused by the unit. Especially when

without the unit, there would be no option. Its a second, third,

tenth chance at life ....... WOW! Dont curse it, Prase it! Cause

its way to cool.

One of my doctors said it best ... most people walk around being

timebombs, waiting to go off. But those of us who have survived and

gotten the AICD, we are finaly safe. We will be followed, tuned up,

charged up and hopefully around for the next round of improvements

(last year I got a shiney new one:)

Life aint what it was,........ but it sure is tasty anyway!

May 31, 2001

hi jennifer,

try jons place in your browser. it is a chf site but has a lot of good info and some younger people in the postings. it also has links to other sites you can check.

bob in pa

-- Re: Emotions Date: Thu, 31 May >2001 10:55:17 EDT>>Hi folks,>>I am a Licensed Clinical Social Worker who was implanted at 39 with an AICD >due to V-Tach Torsades type. I am 42 now and have had time to look at my >life and make decisions to do what I think is best and what I really want >to do. That was to go into private practice. Now I am so busy, I cannot get >to the Tuesday AM meeting or the one on Thurs PM. My thoughts are always >with my zapper buddies.>>When I first was implanted, I experienced all the emotions that we all do >when faced with grief and loss. At first I was frightened to go to sleep, >then angry I couldn't drive or do the things I used to be able to do, etc. >I am three years post dropping over and I have done things and experienced >life more abundantly as every day has been a gift. (I still experience up >and down emotions and not everything is perfect). Yet, I have and the >opportunity for another chance.>>To the point: Everyone needs to express their emotions. We will all go >through many stages of grief and loss. It is normal to be fearful, happy, >angry and all of the above separately or together. Do not feel bad about >expressing yourself and it is more than: AICD alive with it and dead >without it. By discounting other zapmates feelings, we lose the essence of >why we are a part of this , the Zapper, or any other support group.>>There are many books available for us:>>Two are: Heartmates by Levin & >>Necessary Losses (Sorry, I cannot remember the Author's name and the book >is not close at hand).>>You will feel much differently as time really does heal.>>Take care!>>Beth York (Bloomington, Indiana)>>>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.comPlease visit the Zapper homepage athttp://www.ZapLife.org

May 31, 2001

hi everybody,

that statement about 20 years ago brought back painful memory.

my dad at age 70 and just married five months and having the time of his life boarded a bus for a day trip to atlantic city.

he sat down in his seat on a sunday morning and was dead. no pain, no fuss. the driver of the bus drove to ta hospital two blocks away and it was to late. he did suffer from chf as i do now.

i cant help but beleive he would have had a few more years if he had an icd. as much as i hate mine im glad to have it. until the last fre years i thought i was immortal. boy, did i learn fast.

and to you jennifer, that is what this club is for. vent yoiur feelings any time. we will all stand by your side.

take your lemons in life and make lemonade...........

bob in pa

-- Re: Emotions

> I agree and disagree.> I don't appreciate being told that my feelings are not valid - they are. > For as long as they are around I will only look at this particular situation > with pain and disappointment. Now that is very normal and what all people do. You cannot help but grieve for what is lost and wonder what may have been. But no matter how hard it may be, you are stuck moving on. Ya just cant sit there, luckily most people dont seem to.What surprizes me though, are those that have such difficulyaccepting the AICD. I think that is what I have been trying to say. Yes, its inconvient, yes, its uncomfortable, yes, we would rather not need it.But wow, what a gift! 20 years ago, this would not be happening, we would not be talking, we would no longer be here. What magic!! Wecan live and see tomorrow. Wow! Sure, there is a price to pay, zaps,the unknown, medicines, tests ...... But Wow! ...... We will be here tomorrow. All because of this "Cool Tool" they stuck in us.It is so sad to watch someone paint themselves into a small corner of life because of the inconviences caused by the unit. Especially when without the unit, there would be no option. Its a second, third, tenth chance at life ....... WOW! Dont curse it, Prase it! Causeits way to cool.One of my doctors said it best ... most people walk around being timebombs, waiting to go off. But those of us who have survived and gotten the AICD, we are finaly safe. We will be followed, tuned up, charged up and hopefully around for the next round of improvements (last year I got a shiney new one:)Life aint what it was,........ but it sure is tasty anyway!Please visit the Zapper homepage athttp://www.ZapLife.org

May 31, 2001

www.jonsplace.org

>

> hi jennifer,

> try jons place in your browser. it is a chf site but has a lot of

good info and some younger people in the postings. it also has

links to other sites you can check.

>

> bob in pa

> -------Original Message-------

May 31, 2001

Steve,

Well said!

Ruth in PA

November 15, 2002

> It's been eight months since my surgery and I am just now starting

to fee some of the emotional effects

> R., Portland - I looked at your photos. You look

fantastic - but you were also very pretty when you were banded.

The emotional part of this is much harder to deal with than the

physical part of losing weight. I was thin as a younger person, so I

do have the advantage of remembering what that felt like. I am

enjoying it so much more now, because I appreciate it more after

being 300#. I never in my wildest dreams thought I would be a size

10 - but I am. And, oh my God, it is so much fun. I am sure you

have found what I have, and that is - It is so nice to like myself,

the way I look and the way I feel.

Enjoy it, you deserve it!! Life justs get better every day.

Mine is really better today, because Mr. Frisky is back after being

gone for 3 weeks.

Have a great day.

Elma in Graham, WA

Banded 2/27/01

Dr. Rumbaut

300/165/here feels good (just hate that #)

Size 28/Size10/Still coming down from TT surgery

November 15, 2002

,

You are (and of course were!) beautiful and a true inspiration for many of us.

You go girl!! And enjoy you health and life.

Emotions

It's been eight months since my surgery and I am just now starting to

feel some of the emotional effects. Each pound that I lose now put's

, I would never ever change my

decision to have this procedure done. Loving yourself is so worth it.

R., Portland

Banded 2/28/02 - Dr. Srikanth

265.5/188/155

-New photos posted in the album

August 31, 2003

Hi Karyn,

You're awesome! Love your idea! Thanks for sharing this. I could see

something like this work for . Hmm, I'll look into the video

you mentioned at the school district Autism Resource dept. Fingers

crossed that they have a copy of it.

I'm so proud of learning this, a pat on the back mom. Great

job! I loved the way you were able to modify around his level.

Interesting on the physical things. I probably would not have

thought of this. How I would love to observe the actual visual steps

of how you approached it.

I believe I can create something around 's level on what will

interest him on learning these skills.

So am I right assuming that has learned some color skills with

this project/program you have created for him.

I guess something like this could also help with pain level? What do

you think or did you create something already? Thanks, Karyn. : )

Irma,15,DS/ASD

September 2, 2003

In a message dated 9/1/03 8:28:35 AM Central Daylight Time,

writes:

> Hi Karyn,

> You're awesome! Love your idea! Thanks for sharing this. I could see

> something like this work for . Hmm, I'll look into the video

> you mentioned at the school district Autism Resource dept. Fingers

> crossed that they have a copy of it.

> I'm so proud of learning this, a pat on the back mom. Great

> job! I loved the way you were able to modify around his level.

> Interesting on the physical things. I probably would not have

> thought of this. How I would love to observe the actual visual steps

> of how you approached it.

> I believe I can create something around 's level on what will

> interest him on learning these skills.

> So am I right assuming that has learned some color skills with

> this project/program you have created for him.

> I guess something like this could also help with pain level? What do

> you think or did you create something already? Thanks, Karyn. : )

>

> Irma,15,DS/ASD

Irma,

Most of the credit for this program goes to our super senior therapist that

leads 's in-home team. She really adapted it with some input from me. For

the physical parts we just worked on feeling his and our hearts beating

fast. We have worked tons on taking deep breaths when you feel yourself going

to fast. I used the book " the boy and the bear " . It is a very basic book that

takes a child through the relaxation process. We also attempted some

bio-feedback through a psychologist and through that realized that is

great at

bringing his levels down but doesn't keep them down.

We really went for a huge poster when we first started and slowly brought the

size down. Stories starring doing the steps of calming really helped

out. Gotta love my digital camera.

I don't know if it would work for pain. I see the difficulty coming in

because there aren't physical " displays " (like fast breathing, fast heart beat)

when

someone is in low to moderate pain. Like today when 's ear started

draining and we found out that one of his tubes may be gone and his ear drum

ruptured. tells me his ear hurts but he says it anytime I get mad so I

don't

know when it really does. It si so hard for us to see when our child is

experiencing pain that the teaching would be difficult.

karyn

June 10, 2006

>

> How do you get free of a very stressful situation, when it

concerns a Hm. Care proivider, who does everything for me, but now

she's interfering with my children going to school and basicly

trying to take over my life and kids so she can try and take them

away from me? Also HM.Care providers are hard to find, so I'm having

a lot of stress from this and could possibly have another stroke

from all this! Please Help me figure out how to handle this

situation?

>

contact thesocial services people in your area. This sounds like

disabled abuse. You can start with dcf or cys which ever one is in

your area. If you really feel this strong contact the local

authorities and have them contact her employer as there are people

out there just trying to get what you have. The main thing is to

remain calm and think about your family. Don't be afraid of this

person these people coun t on u being afraid. When she is gone for

whatever reason if u cannot use the phone book call the opearator

and have her put u in touch with children andyouth services and ask

them to contact the right people. There are people out there to help

you.Good Luck and God Bless

January 14, 2007

Well folks I heard a very good sermon on TV this morning that really hit the

nail on the head for me. I have got to stop felling sorry for myself because I

have been on this diet for soooo long and still have candida. I should be

thanking God that he lead me to Bee and her site to help me with this. I have

seen improvement and if I didn't have Bee's knowledge behind this I would be in

a lot worse shape right now. I could not have done this on my own. Bee THANKS

for all you do. I wish I could put a face to your name. Could you post a

picture??

Thanks again

Deb in Mi and Fl

August 2, 2011

Your emotions are normal. I think it's all about perspective. There is no

probably - it will be a good thing. It's the best chance you have for your son

to be one of the lucky ones. If you get on utube there is a little boy Bex that

has a clip 24 hrs (I think) after his 1st cast dancing and running. It may take

your child a few more/less days to adjust but he will. Struggles are part of

life. They make us stronger:) he will remain his happy little self. My son who

is a special needs child can ride a bike and scooter in cast..SLOWLY- but he can

do it. There are times casts suck... All the cousins go swimming and leave

him.... Cast sores.... But all in all it's not a big deal. The big deal is we

are trying to help correct his spine and give him a shot of a life without

repeated surgeries, rod extentions, pain, ect. We are trying to keep him healthy

and happy, which is what you ate doing too. You will see- in a few months this

will be old hat to you. It may

even be over. You will laugh that you were initially so tearful. Things won't

be perfect, they can get downright hairy BUT it will be ok. Life will resume in

a predictable manner with a new normal entwined w the old;)

I promise it will be fine. You have a lot to be thankful for. Your son is the

perfect age and his curve is relatively low. Now get in there and do this thing!

In the grand scheme of things this will hopefully be a small glitch in the road.

If you haven't visited the ISoP site do. Read all the positives. Allow yourself

to be optimistically hopeful, it beats the pants off despair. (says the mom who

is mildly freaking out about cast #4 hoping we will continue to make progress

and terrified we won't ) We all have our days of dread. Just know in your

heart and be confident in your mind..... This is the best shot your son has. You

are doing the right thing. You are doing what's in your power to help your

baby:)

Best wishes and good luck!

God bless,

Tame

Sent from my iPhone

On Aug 1, 2011, at 10:06 PM, " Heath " <jaheath86@...> wrote:

Hello there. I haven't been on CAST in quite some time. My son, , was

dx with infantile scoli when he was 4 months old. At the time, his curve was

around 20 degrees and everyone was cautiously optimistic about it resolving. He

is now almost 15 months old and we were told this Thursday that his curve has

now progressed to 45 degrees (since April). We have an MRI next week, and a

projected first casting at the beginning of September at Shriner's Philly. I am

currently working on getting all of his XRays, etc faxed back to Shriner's

Philly. We originally began treatment there, but transferred to another

hospital for a second opinion--stayed there a few months--and are now returning

to Shriner's because they seem to follow Dr. Metha's principles much more

closely.

I feel like I have most of my p's and q's in line regarding casting from a

medical standpoint, but I have another question for you moms/dads out there:

How did you get through this process emotionally as a parent?

Ever since Thursday I feel like I cannot stop crying. I guess it's because for

the last 10 months, 's back has been stable and we thought we were going

to be one of the " lucky ones " that self-resolved. Now, I suppose reality has

hit that this is real. I know CAST will probably be a good thing, but sometimes

reading about all of the struggles and frustrations just makes me dread it even

more. I cannot imagine watching be unable to sit up--walk (he just

learned)--and play. He's such a happy baby, and I am so fearful that this is

going to change his personality and make him angry and scared. Has this been

the case for most people? Any words of wisdom that helped you get through this

at the beginning? I'm not trying to be negative--just honest. Any thoughts

would be greatly appreciated! Thanks so much.

------------------------------------

August 2, 2011

Hi there, my name is Graham Hill and my wife and I went through this whole

process exactly a year ago with our then 27 month old Olivia.

the emotional ride was signiificant for us as well, and for all parents- each

one is so unique. we were treated at Shriners Philly with Dr. C after a consult

there and at Sick Kids in Toronto, we are from Toronto. We too felt that

Shriners followed the Metha method much closer and Dr. C has become a subject

matter expert in short course. We do not have to go to Shriners in Philly now,

we go to Erie which is wonderful and really kid centric, also 6 hours closer to

us. We had the first cast on in Philly and as you have noted, we questioned

everything, still do. We call it our new normal.

I hope this gives you hope. Our daughter has not really be limited due to the

casting and bracing (we are in our first brace for the summertime which is

great), except for the new normals like being vigilant around water- watching

and preventing pee leaks (these are rare for us as she is now potty trained) and

monitoring her in the heat and around sand etc.

I am not sure if it has gotten easier on the emotions, just more familiar I

guess...

The CAST group has been a great resource for us, and we have learned to trust

Dr. C, he is good and knowledgeable. As I said each case is unique and some

kids get straightened out in short course (boys usually resolve better and

sooner that girls, so hopefully that will be the case for you.

the first cast is the hardest for sure. you never want to see your child in any

discomfort. I know that Olivia acclimatized pretty quickly, quicker that we did

that is for sure.

Are you closer to Erie or Philly?

Graham

>

> Hello there. I haven't been on CAST in quite some time. My son, , was