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When I was growing up, I had my moments were I would daze off, somewhere that I wanted

to be at that moment.... I wanted to be a Naval Aviator Pilot in the Army!, I even went for an interview

at the base (I was turned down because of the Asthma)...My health problems began when I was 17 years old

and since then it has been non-stop one thing after another....

When I had the emergency operation for an Appendectomy. I was taken to an adult hospital, instead of the

Children's Hospital. Young and scared I wouldn't let the ER dr touch me or come near me. I still remember they

had to take blood from my bone marrow (near the wrist) because I had no veins even back then.

Anyways, the surgical team came to see me, said I needed an operation. There some minor problems,

1st) I was under the age (17) to be operated in an adult hospital you need to be 18.

2nd) They call the ambulance to come and pick me up, to take me over Children's Hospital

3rd) Paramedics arrive, they bring their stretcher, for about half an hour I was switching from hospital stretcher

to ambulance stretcher

4th) Dr's and Paramedics were arguing if it was safe for me to travel by ambulance to Children's Hospital

5th) Finally, it was decided I stay at the Adult Hospital

6th) While waiting in the hallway for surgical team, to take me to OR, I saw them from a distance coming towards me

and my family...I turn around tell my parents the surgeon is cute isn't he.....

My moms turns around and tells me "you're going in the Operating Room and you're thinking how cute the surgeon is?"

As soon as the operation was over, they went to my parents and told them I was awake and I was asking for Mc's.

My mom keeps saying to me even as a child I had my adventures!

Irene

PF 03/07

Raynaud's Disease 09/07

Canada

---- Original Message ----

To: Breathe-Support

Sent: Mon, 1 Oct 2007 8:28 pm

Subject: Re: Good Evening to All!

Hey, ...sounds like you need some help!! I don't understand

all that you have to deal with...but, I'm on your side!

Life is so fully of bumps. I remember as a kid I could hardly wait

to grow up so I could go to bed when I wanted, do whatever I

wanted....live happily, and have plenty of resources...(money).

Well, was I wrong or what?

Take care of yourself!! Joy (aka joynoel)

>

> Hey Irene,

>

> Well, considering I'm on 20mg of prednisone, and taper in about 2

weeks, I guess I'm hangin' in there. I think it is the rest of my

family you should be concernd about!! GRIN I think I'm driving them

nuts with the mood swings. GRIN even the cat stays right by my feet

when i am at home. It's as if she senses things aren't quite right

with mom.

>

> The diarrhea is pretty much under control, and I hipe as the taper

goes down the Imuran starts to kick in and cause me no issues, but

again we will have to see.

>

> Breathing wise, I've had to take quite a few deep breaths lately,

and i am wondering if i am retaining some fluid on the prednisone,

but alas my doc is out of the country until sometime next week. My

pyoderma gangrenosum is NOT responding to the steroids at all, but

then again I didnt expect it to as the dose isn't high enough, so I

will just live with the pain for the moment until the pyoderma

decides it wants to behave again. It took 6 months last time, and I

only got 3 good months of relief!!!

>

> Other than that I would say things are just fine. GRIN I hipe you

are finding things going a little better than last we chatted.

> Take care and have a good afternoon

> Tillman

> PF/Hermansky Pudlak Syndrome 2002

> NC

> www.myspace.com/karenshpskorner

> __________________________________________________________

> Tillman, Regional Coordinator, Mid Atlantic-USA

> Hermansky-Pudlak Syndrome Network Inc

> My NC phone:1

> NY home office 1. / fax

>

> * HPS is a genetic disorder that is characterized

> by albinism, visual impairment, and a bleeding problem.

> Some genetic mutations can include colitis and pulmonary fibrosis.*

> http://www.hpsnetwork.org

> One South Road

> Oyster Bay, NY 11771

>

> Good Evening to All!

>

>

> I want to Wish You All, a Good Weekend!

>

> At the moment I'm in between feeling a little better and

crawling under the bed!

>

> Irene

> PF 03/07

> Raynaud's Disease 09/07

> Canada

>

> ----------------------------------------------------------

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>

>

> ----------------------------------------------------------

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>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.488 / Virus Database: 269.13.33/1036 - Release

Date: 9/28/2007 3:40 PM

>

>

>

>

>

> ----------------------------------------------------------

----------

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.488 / Virus Database: 269.13.33/1036 - Release Date:

9/28/2007 3:40 PM

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

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