Sharon

[Guest guest]

u have 2 kids with jra?

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[Guest guest]

, I have 3 kids and two of them have JRA. is 9 and has

systemic JRA. Olivia is 7 and has polyarticular. Although her dx is

not etched in stone because her JRA is so unpredictable she really

falls into the " poly " category because of the dz progession and she

seems to have joint involvement on both sides at the same time. She

has increased dz activity right now and it presents more like poly.

As soon as I have a few minutes I am going to fill out the survey

Robbin posted. (This is a very valuable survey, to me) As a note

for those reading this post, I was dx with Dermatomyositis 4 years

ago and my sister has Multiple Sclerosis. Now tell me doesn't that

sound like a genetic link! Take care and I wish you well.

Sharon

> u have 2 kids with jra?

>

______________________________________________________________________

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[Guest guest]

Sharon, my heart goes out to you ....your many problems because of the ICD

and heart problems, sound like they have made you so much stronger and by

telling your story, a blessing to many. I have a question for you. Have

your Docs tried you on any meds with your ICD ie; amiodarone, etc.? My ICD

fired eight days after implant 4 X's. I never was never out and I did feel

the pain and have all the worries associated with it. I was hospitalized for

several days in ICU where they found that it was a true " zap " , without the

ICD I probably would be dead. The amiodarone has helped and am now taking

only 1 200mg per day, and I've not had any serious side effects. If there is

a reason your Doc doesn't have you on this and you don't know what it is, ask

him. We must all remember that we have to take control over our medical

wellness. Research (magazines, internet, etc.) and asking our Docs about new

treatments and if they are for us if up to us. They have many patients to

take care of we have only one to worry about. I wish you peace and

Blessings,

Stephi, New Orleans,

ICD, cardiomyopathy

[Guest guest]

Dear Steph, Thanks for your reply. I think that all of are stronger for the

experience that we have had to deal with. Truthfully I never ever thought I

would get to this frame of mind that I am now somewhat in. A couple of years

ago I don't think I went a day without crying and really being down.

I have had several heart stopping jump start experience. I first couple were

years ago when know one even knew what was going on. After being in a local

hospital for weeks I was shipped to Cleveland Clinic and there underwent my

very first EPI it took them several zaps to bring me back and my chest was

rather fried and burned. At that time according to them and due to my age I

was tried on numerous medications. All which failed. I was then put in the

clinic and put on Ameodarone on my third day I went into respiratory failure

and developed drug induced Lupus. My eyes turned orange and my vision

blurred. I was allergic to it. We tried three more times but same results

as I was trying to avoid having a icd implanted

After several more weeks had icd implanted within six months of first implant

unit malfunctioned and repeatedly fired causing major damage. Unit was then

replaced and I was home with no med. for about 3 months until it started

firing again. I went back to work ran my home raised my kids, etc., tried to

be normal.

13 months later this unit malfunctioned and started firing repeated for 4

hours. I was life flighted to the Clinic where it was determined the wiring

was rotted and the device could not be fixed. At the time I was to weak and

I n poor health to try opening to implant another as I got a bad infection in

chest cavity. I was in the hospital for three months trying to heal. I

decided against letting them try again as I was to terrified of it firing for

the wrong reason and doing more damage. For several years I lived on med.

large doses of Beta Pace and Inderal and Quidene, etc.

July 15 199 I was found on the floor of my house not breathing and non

responsive. I was lucky we have an excellent EMS squad in our area and the

were able to zap me back.

I heart doctor and heart surgeon said no more stalling as I would not make it

to the end of the week without a new icd. I finally consented although it

went against my grain as I promised myself never again. Before they put it

in we tried Amiodarone again with same allergic reaction. Had icd implanted

two week later watched my daughter get married and three days later icd

malfunctioned with bad wiring again. My new icd is in right chest cavity as

this is only place left and we are n my last good vein.

Depression set in and I went to hell and stayed there for many many months.

This board and some of the great people on it listened to me supported me.

Chided me and so on. I don't know why or ow I made it this far back it has

been pure hell. On top of everything I am totally menopausal along with

numerous asthma and allergies and stomach problems and ear problems and Lupus

and fibroma what ever. But I am here. Days are good days are bad. Somedays

I am on top of the world some days I am in the bottom of the ocean. Some

days are just days. But that is when I look for tomorrow's.

Thanks for listening

Sharon

[Guest guest]

that is quite a story Sharon...but you are here and I'm grateful that you

are. (I think I already emailed you about this but here goes again) My doctor

has been recommending that I get an ICD also. I probably would've had it done

right away, but I had the very unpleasant experience of watching my daughter

get zapped 6 times in her dance class (due to the device not being set

correctly)...and there was one incident before that one where she was shocked

3 or 4 times for the same reason. Thank God, it is set correctly now and she

is doing very very well. She did quit her dancing as she was afraid of

getting ''zapped'' in front of an audience on recital day. I can't say I

blame her. Watching my daughter get zapped was the most horrifying experience

of my life....(and I've had a few)...it put me into an emotional shock that I

just can't come out of. I know that God is there for me and that He will show

me when (and if) the time is right for me to have this ICD put in. I will

pray for you for peace and health as you continue your journey in this life

with your ICD. Believe me when I say that God has a reason for ALL things

(Roman 8:28)...God Bless

[Guest guest]

Sharon... I had no idea!!!!! Bless you for hanging in there. This must have

been an absolute nightmare for you and your family. I don't know if I

could've done it. God's keepin' you around for a special purpose!!!! You

will be on my daily prayer list.

Blessings, Stephi

[Guest guest]

Hi, --

Even though you were writing to Sharon,

I took to heart the encouragement you offered.

It's far too easy for me to forget that God is in

control, that He doesn't waste any of our

experiences, & He does all things to His glory

& our good. Thanks for the reminder!

God bless you & your daughter, too.

~Pam

[Guest guest]

Sharon, how my heart goes out to you. You

have truly been through the ringer & then some.

I don't understand why these awful things happen to us, & I find myself

focusing on all

the negative instead of the positive. Maybe

that just goes along with being sick... don't know. You're a brave

woman, & I admire your

courage & tenacity. You'll be in my prayers.

~Pam

(ps -- I also have multiple health problems,

including lupus & FMS, so if it's not one

thing, it's another, huh?)

[Guest guest]

, I want to set down and write you a letter please send me your e-mail.

Iread a couple of things that have helped. My son witnessed me getting

repeated shocks and hates the fact that I let them put another icd in me he

was 20 and watched me zapped 54 times. Let me tell you he is terrified of

this thing.

Keep the Faith

Sharon

[Guest guest]

As you all our on mine.

I certainly got a big charge out of the experience.

sharon

[Guest guest]

Hey Sharon, I'd love to hear from you anytime. To know that I'm not alone out

there is a very big help. I feel like the biggest chicken in the world...but

at this point I still can't even consider getting this ICD because I'm so

afraid of how many things will change. Unfortunately, I'm a nervous person to

start with and I just feel like I'm just asking for trouble. Call me nuts!!

Anyway, my email is LandL24@... anytime! God Bless

[Guest guest]

Oops, Sharon, I forgot -- congratulations on

your soon-to-be-a-grandmother status! You'll

be joining a list of a bunch of us grandmoms,

some of us more dotty about the darlin's than

others, but all of us totally in love with those

babies. Mine are 8 1/2, nearly 6, & 3. The

best in the world!!

~Pam

[Guest guest]

Dear , Where can I begin? I am not sure what to say to ease your fears

or anxieties as they are very real and something that only you can come to

terms with. You have no easy decision.

Let me tell you a little about me. I have had some type of heart condition

every since I was nine years old but no one knew what to call it. They ran

test and more test but still no real answers. It was decided that I had

contacted rheumatic fever and it went undiagnosed so I was but on a

restricted ;ife sty;e. No gum no running no playing no anything that a

normal nine year old wants to do. I was given doses of antibiotics every day

until the age of 20 . I had been in and out of the hospital and by the time

I was 20 Cleveland Clinic had started there third medical journal on me.

I got married had children was always sick with one thing or another. Had no

energy a million things until the point I thought I was crazy. I went to

several doctors with no answers except I had this enlarged heart with a hole

in and a bad value but not bad enough to do surgery at this point.

I manages to spend about a month every years from the time I was 30 in the

hospital with some unexplainable illness that caused my heart to go whacky.

They thought it was my lungs. They thought it was a weird type of asthma,

they thought that it was Lupus. My husband thought I was a hypocondreact

(please excuse spelling as some times brain will not let me think of the

right letters or words).

I had dizzy spells black outs and weird things happen. I went to a shrink

because I thought I was crazy and just over emotional. I come from a screwed

up back ground. If you have ever read a child called it or the Lost Boy you

would understand my parents. But I survived all that.

I wore the halter monitor so much it began my best friend. My family doctor

worried constantly. Then one evening I was walking in the snow just walking

with my daughters best friend the next thing I remember was Missy bending

over me I was laying in the road with this terrible headache and roaring

noise in my ears. She said I just fell and stopped breathing. She started

shaking me and then I came around. Well, when we got home she told my

daughter who told her father and the next day I was at the doctor who put me

in the hospital where I promptly failed all their test and was shipped to a

new specialist at the Clinic. Where upon arrival I again arrested. Now mind

you all this time I was on heart medication for mitral value prolapsed and a

hole in my heart. Well, this doctor looks at me and says we will do and EPI.

During the EPI I arrested two times and the second they had a hard time

bringing me back. They said you need a icd sign here. I said I don't think

so. They refused to releasee me so I walked out. Two days later I arrested

again my husband gave permission for the icd. I was put on the waiting list

and kept in the hospital until a unit was available. My first unit was a

Lily and I had to promise to give it back if I died, YUK!

Well, after all that it broke and then they fixed it and it broke and I got

shocked a lot and then I got another unit and it worked fine but I was a

mental case I thought about suicide constantly. I talked with my Pastor who

was no help there were no support groups available at the time nor was there

a computer board like this one, if there was I didn't know anything about it

this was years ago.

Thirteen insane months later to the date the unit was implanted the wiring

went crazy I was zapped repeatedly until I was life flighted to the Clinic

where they finally shut the unit down. It was found to be defective they

went in to repair it and well that another long letter and after four hours

decided they couldn't put another one in because of damage and I was so weak

so they hooked me up to monitors and contraptions that kept track of my every

move. They told me I was a goner without the unit, but agreed to let me out

if I came back every three days. I would have agreed to amputation at that

point I just wanted out of the hospital and to come home and be with my

family.

To make a very long story a little shorter I hide, I lied, I switched doctors

again and again. I prayed to God each day to keep me safe and not let

anything happen till got Donielle out of school and away to college. I

bargained with God everyday. I finally went to see someone because I was a

walking fear bag, she was crazier than me and had no understanding of why I

was so afraid s I only went three times. Then my marriage fell apart as my

husband was sick of me being sick so he decided to find a healthy

replacement. He said he would stay in the marriage but he wanted nothing to

do with me but since we had three kids together and I was a good wife and

mother he would support me and let me use his health insurance but as far as

that nothing else. We have not shared the same room in over 8 years.

In 1998 my daughter began engaged to a wonderful man and a August 7, 1999,

wedding was planned. During all this time I worked full time when I wasn't

in the hospital and was at every event my kids where every in band, choir,

track, cross country, softball, volleyball and soccer. I had a wonderful

boss and we had a sick relationship. He was unhappy at home with his wife so

he followed me around like puppy and sort of took care of me. He would

actually shut the office down and drive me to wherever my kids where and then

he would stay and watch. My husband traveled a lot. Ted was a short little

nutty guy but he was good to me. There was never anything between us except

this weird bond of two dysfunctional people leaning on each other. I finally

got to the point where I could no longer work full time. I was in the

hospital so much that Ted finally had to hire another person to replace me

but I always had a job to go back to. I worked as an associate licensed

insurance agent. I still have my licensee.

I was working like a dog to pay for my daughter wedding as we had nothing

saved and no matter what she would have a beautiful wedding. Luckily I sew

and I am a little craft so I was able to make all the flower arrangements and

make her veil and ring bears pillow. I was working night and day and on the

day they were looking for JFK Jr's body I came in from working in the yard.

One of my daughter e boyfriends was helping me with my yard work. I told him

I was feeling funny and went in the house to rest that is the last thing I

remember until I came to in intensive care. Seem my little barking dog saved

my life when I fell of the couch onto the floor and arrested Chance kept

running up and hitting the door barking and barking and heard him and

thought he might wake me so he came to the door to let him out and found me

on the floor. The rest is history. My husband was out with another woman at

the time. When he finally showed up at the hospital he had lipstick all over

him.

I tried to get released as the next day was my daughter wedding shower.

Well, Akron General Hospital brought all the heavy guns. Two shrinks two

heart surgeons two heart specialist, my daughter my sons, my friends and even

my husband, two pastors, and a whole team of nurses. Then when I kept saying

no no no to a new icd Dr. Gordon did a dirty tricks he took my daughter and I

down the hall to meet a man and his family that had also said no. He had

arrested and they finally got him back and he was a vegetable. His wife

talked to me for hours and hours and said she would put it in him herself if

she could only get it back. I woke in the middle of the night called the

nurse and said I do it but you need to do it now. 2 hours later I was in

surgery.

On August 7, 1999, I walked down the aisle on the arms of my two sons with

bandages on my chest and shaking with fear that my icd would fire any minute

and ruin the wedding. That day God showed me why I needed to be there. As

my daughters special song started I stood t watch the most radiant beautiful

bride walk down the aisle on her fathers arm to marry her prince charming.

Two weeks later the wiring in my unit went bad at it started firing again. I

went out of my mind. I was crying and screaming and yelling at the doctors

and asking God why why why. When was enough enough? My heart surgeon t this

day says hen ever want to see that fear and agony on anyone's face again. He

promised me he would fix it or he would take it out and let me be. He fixed

it. It works fine. I has fired several times because I need it. I use to

have dreams that it was firing and wake up screaming they even have a name

for it is called phantom shocks. Well, after my third trip to the hospital

for phantom shocks having my husband look at me like an idiot and say what a

waste of time I went to my family doctor and said I need help. I have been

seeing a wonderful shrink. A real genuine shrink and it has helped. I am on

Prozac and it helps.

I can tell you this I have been here and there and all over. I have cried, I

have begged to die, I have begged to live. I have yelled, screamed and ask

over and over why me?

I have stayed awake night to afraid to sleep. I have sit in a chair in pj

for days on end and cried. I have read book after book. I have read the

bible. I have talked to the devil. I have hated all who have caused me pain

and suffering. I have had panic attacks, memory loss, I have lost friend, I

have lost and found my faith several times.

I have forgotten how to do simple things. My shrink says among other things

I suffer from post traumatic stress syndrome. Yet through it all I am here

and I am alive and I am breathing. My life style has totally changed.

Someday I hate being alone and afraid. I miss my job and my what used to be

my social circle. I am overweight and not interested in exercise as I am

afraid it will fire. I am not a really religious person and I question God

and religion daily. Although I know that there is something out there.

But today right now I am OK for this one moment in time I am OK I have

survived. This is the passage that runs through my head each day to

everything there is a season.

I know without this unit I would not have seen my daughter walk down the

aisle and without the unit I might not have been here when my son needed me

when his wife left him out of the blue. I would not be here to see this new

life this child that my daughter is having. I can't change all that has

happened to me. I can't change what my parent did to me, or what did to

my son, or how my husband is or the fact that with all this I had to deal

with my oldest son being gay. But for today for right now I am able to write

to you and hope you will find strength to make the right decision for your

self and you w ill find peace in your mind and in your heart.

Lord I need to close I think I am becoming Tammy Fay.

Hope I didn't scare you to death.

Love and support and friendship

Sharon

[Guest guest]

Sharon,

Hang in there, kid.

You've come back a long way to throw it all away.

I am SO sorry to hear about the misery.

May I suggest something? Read the story of Job. It's in the Bible. May help

open some eyes, get some insight(s).

Joe

[Guest guest]

Sharon-

Whew! You've been through a lot, but all I can say is that humans are amazingly

resilient and I find it inspiring what people are able to survive and even keep

the hope and strength to carry on. The human spirit is asounding.

I have just been through the death of my father from congestive heart failure.

He was in good health until a few weeks ago, but while on vacation became

dehydrated and went into atrial fib related to a leaky valve. He then took a

fall and cracked a couple of ribs. I spent a week with him in Colorado (where he

was living) and he improved. Then I came home and he got worse and passed away.

Then I spent a week in Texas where my family is from, and where he was buried. I

am left feeling impressed with the fragility of life, the fact that someone is

there one minute and gone the next (and God knows, I have been there myself, as

have most of you), but also the strength of the human spirit to survive and

persevere. Sometimes what's in our hearts is great strength of spirit - even

when the EF is abysmally low.

Peace,

Fran in Minnesota

[Guest guest]

Dear Fran, Sorry to hear about you Father passing. I hope you have many

happy memories to get you through the dark days.

None of know what the future holds or if there will be a tomorrow I think

that is why we must always have faith. Faith in ourselves and our beliefs

and in the world around us. Sometimes we only heard the bad things about

life and that are going on around us.

We are all survivors and we have all paid our dues in one way or another. I

look at all that I have been through, yes I scared the hell out of me, yes I

lost a few friends and found out a lot about my family. But more than that I

found more out about myself. I know that know one wanted me to have all the

problems I did. Maybe this is a little heroic but I believe that because of

what all I have gone through maybe someone else will have a better time of

it. We learn from things that don't work right. That is how we learn to fix

them.

I can never ever be glad for all that I have been through. But if you ask me

today whiter I would go through it again the answer would be yes. Life is a

privilege and having the aicd has let me have this privilege.

I think sharing the bad part about what we have been through is good as long

as it is not what we constantly dwell on. Each of us has our own pain

tolerance and our own level of anxieties. Each of us will cope in our own

way. The negative experience make is harder to always be on the bright side

and not to have fear of the unexpected.

Each of us will receive shocks in different ways and handle them in different

ways it all depends what you are being shocked for and what jewel you are set

at. Me I am set high and my shocks hurt very bad as I am a hard start.

I am at a point where I can now get shocked and when its over go back to

sleep and say thank you God for this machine that kept me alive tonight.

There are days though when I am shocked and I fall down or burn myself or

break a bone that I don't bounce back so quick, Coming to terms with your

self and taking it one day at a time is all I can hope for.

Hard Start

Sharon

[Guest guest]

Sharon, I'm curious why your son doesn't want to get help. Is he just okay

with the way he is or does he just think it would be too hard to change or what?

Just wondering.

-Stacey

To Stacey - WAS Re: Chris

>Date: Mon, 19 Nov 2001 17:26:38 -0000

>

>Hi Stacey! Well, at least your family members seem familiar with

>OCD, which is a plus! Funny how others can notice it. With my

> who really got hit with it hard last year, I can now look

>back at the earlier years and " see " OCD behaviors that I didn't

>realize were OCD. I did know he had " OCD " in that he'd erase and

>rewrite some letters or trace over them, but that just slowed his

>work down in school, nothing major. But NOW I can look back and see

>other behaviors. Like the constant reassurance questions he had then

>(doesn't do this much now).

>

>Now one of my other sons, ('s twin) I have diagnosed

>myself with separation anxiety. He doesn't want me out of his

>sight. He was really bad last summer but has eased up a little now.

>He had this " fear " that I would go off and not come back so he has to

>go everywhere with me. I can't even go to a restroom in a store or

>something that he doesn't get a panic attack! Even if I leave him

>with his brothers. And he wasn't like this in his younger years.

>

>(I joke that I want to go back and start all over with my kids!)

>

>I think some of the parents on this list who have kids your age or

>who started the CBT therapy at a young age will tell you that it HAS

>helped their kids. Now my 12 y/o, in my opinion, doesn't " get it "

>about bossing back OCD or trying some exposure/response type stuff.

> is also very closed-mouthed about whatever he is going

>through; whereas some parents here have mentioned where there kids

>will say that " OCD is bossing them around " , etc.

>

>Are your son's panic attacks at school related to your not being

>there? Or is he shy?

>

>I don't have on meds yet but I think I'm one of the few in

>the group who doesn't. Believe me, there are many times I wish he

>was. But he's 12 and says he definitely does NOT want to go on them

>(can't swallow pills either, though we could get a liquid). Anyway,

>we're just struggling along without them for now.

>

>Keep us updated on school and home! What behaviors did " everyone

>else " see that's related to OCD? Repetitive things, etc?

>

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

He has now gotten help, but before he didn't want to tell a " stranger " his

problems. He is quite shy and was reluntanct to talk. When his symptoms

became severe, the pain overcame the shyness and he was more than willing to

go. He has been in treatment since January.

Sharon

>From: " Percy and Stacey Dunagin " <dunagins@...>

>Reply-

>< >

>Subject: Re: Sharon

>Date: Mon, 19 Nov 2001 20:48:46 -0700

>

>Sharon, I'm curious why your son doesn't want to get help. Is he just

>okay with the way he is or does he just think it would be too hard to

>change or what? Just wondering.

>-Stacey

> To Stacey - WAS Re: Chris

> >Date: Mon, 19 Nov 2001 17:26:38 -0000

> >

> >Hi Stacey! Well, at least your family members seem familiar with

> >OCD, which is a plus! Funny how others can notice it. With my

> > who really got hit with it hard last year, I can now look

> >back at the earlier years and " see " OCD behaviors that I didn't

> >realize were OCD. I did know he had " OCD " in that he'd erase and

> >rewrite some letters or trace over them, but that just slowed his

> >work down in school, nothing major. But NOW I can look back and see

> >other behaviors. Like the constant reassurance questions he had then

> >(doesn't do this much now).

> >

> >Now one of my other sons, ('s twin) I have diagnosed

> >myself with separation anxiety. He doesn't want me out of his

> >sight. He was really bad last summer but has eased up a little now.

> >He had this " fear " that I would go off and not come back so he has to

> >go everywhere with me. I can't even go to a restroom in a store or

> >something that he doesn't get a panic attack! Even if I leave him

> >with his brothers. And he wasn't like this in his younger years.

> >

> >(I joke that I want to go back and start all over with my kids!)

> >

> >I think some of the parents on this list who have kids your age or

> >who started the CBT therapy at a young age will tell you that it HAS

> >helped their kids. Now my 12 y/o, in my opinion, doesn't " get it "

> >about bossing back OCD or trying some exposure/response type stuff.

> > is also very closed-mouthed about whatever he is going

> >through; whereas some parents here have mentioned where there kids

> >will say that " OCD is bossing them around " , etc.

> >

> >Are your son's panic attacks at school related to your not being

> >there? Or is he shy?

> >

> >I don't have on meds yet but I think I'm one of the few in

> >the group who doesn't. Believe me, there are many times I wish he

> >was. But he's 12 and says he definitely does NOT want to go on them

> >(can't swallow pills either, though we could get a liquid). Anyway,

> >we're just struggling along without them for now.

> >

> >Keep us updated on school and home! What behaviors did " everyone

> >else " see that's related to OCD? Repetitive things, etc?

> >

> >

> >

> >

> >

> >

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

I think it's just being a teenager. My non-OCD teen and most of her

friends would prefer this same sleeping pattern.

Kathy

> >

> > Yours too? My 16y/o son also likes to stay up half the night and

> then sleep

> > half the day. Think it's OCD or Teenagerhood?

> > Sharon

>

> Sharon, definitely teenagerhood and a bit of stubborness!

>

> Chris

[Guest guest]

Sharon,

Hmmm... I hit reply to answer your note and twice got it back as

undeliverable.

Anyway, thanks for the recipes. I am really looking forward to trying them,

the lemon grass as well. :-)

Absolutely no apologies are necessary. After I put out the cat's butt, I

laughed so hard myself that my stomach hurt.

¸..·´¨¨)) -:¦:-

¸.·´ .·´¨¨))

((¸¸.·´ ..·´ -:¦:- Sage -:¦:-

-:¦:- ((¸¸.·´*

[Guest guest]

My e-mail is tajshi@... sorry about the undeliverble its in my

husbands name. God Bless you you are so sweet.

Sharon

[Guest guest]

Hi Sharon: I know Dr. Reddy the Hepatologist has a son that is also a doctor but I don't know which field of medicine. I know he left Miami but wasn't sure if he came back.

Thanks for the response.

Genny

[Guest guest]

Hi Stranger,

I knew you were missing.....and was glad to hear from you. It has sure been quiet on here from everyone. Glad that you now are able to use a computer again and let us know you are ok.

Sure hope 2003 is better for everyone. Seems like we all had a rough one last year and I know we deserve better!!!

Take care of yourself and your grandbabies.

[Guest guest]

Hi Sharon...

I just came up to the office to get on the computer to get to some more of the emails I need to reply to ....and yours was the first one....and the last one that was just sent today...lol

I did see the email to the group that you had been able to get together with us....and it really is nice to be able to meet up with people that we talk to here....I have now met a couple of people..from the different groups I am in....You know that I met up with from the other group...her doctor is also Dr. Reddy...and then there is Joan from this group....she and I got to meet a couple of yrs ago...and they ...her family...husband and 2 daughters also got to meet Ty when they went to Great Adventures for the day....she had called me to say they were going and where in the park could they look for him....It so happened that it was his day off and he was already out with friends.....I was able to get in touch with him and let him know and he said to call them back and he would go to the park and meet them....The girls had already met him...but Mike hadn't ...so they all got to meet....and Joan and I most talk off line...when we find the time...lol...

It was great to again meet someone ...and it was really nice of you to come out of your way to meet us....we are as you know pretty much stuck there ...but things did go well that day and we left around 11am the next morning.....and so now he gets a whole month of being away from doctors and hosp....a record...lol....

he goes back on the 20th of Feb for his next Remicade....

His doctors at the NIH happened to call last tues to just let us know that they are still putting things together and they should have everything and meet on the 6th of Feb....and then will be in touch with us most likely on the 10th...so that is what we are waiting for.....

Ty has been doing pretty good...back to classes...still seems to need alot of sleep....but at least he isn't working right now....there is just a lull in his job right now...since the park has been closed since Jan 1st...although he and his girlfriend are being paid to do inventory on their stand and are doing some cleaning up and organizing for next season....infact the 2 of them have today off of classes and have been at managers meeting all day.....

yesterday after classes they went sledding...and he ran into a tree....I think I am going to have to tie him to me.....geeezzz....of course if weren't for all his problems it would not be a big deal at all....but...I am just glad he didn't break anything...

he is going to make me nuts I think....lol....they told me about it laughing and all I can think is ....his spleen...his hips...his bones in general....

oh well he is ok and off and running again.....

Have a nice week away...are you going far....business or pleasure...sometimes it can be both....

take care and talk to you when you get back...

love

Luanne Ty's mom

[Guest guest]

Thanks Pam,

She was infused at the same location, but this was a much different experience.

I requested a pump, they provided one. Her vitals were taken regularly, they

pre-treated her with a fast acting steroid that began with a " C " (i can never

remember the name), motrin and benadryl. In addition she was the ONLY patient

that day. The nursing staff bent over backwards to make this infusion better.

I cannot say enough good things about the care she received. Thanks to this

board and Beth Rathburn for taking the time to talk to guide me in my efforst to

ensure better care for my daughter. God brought you all in my path , just when

I needed you.

Thank You

Sharon

Mom to 10 Igg def, & 20

Sharon

I'm so glad to hear that 's second infusion went somewhat better. I

was wondering where you had the second infusion done. If I'm remembering

right, your first infusion was done, well, how can I say this? Unusually?

The nurse used a wheel to set the rate and there were no premeds, etc.

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1