New Update and Support Group News

[Guest guest]

Well

I have been a busy little bee lately. Possibly why I need to be readmitted

but oh well.

But Ive been working on the Raleigh area support group and the " Pulmonary

Disease Adventure Camp " this summer in the mountains of NC. Things are going

well. I am going to talk with some teens at the CF clinic nearby (also other

disorders, big university). Also I am going to all the local pediatrician

offices to hand out flyers...most have been really excited about it. Also the

local allergists and Asthma docs.

One pediatrician looked up all there asthma, CF, and other lung disease teen

patients on the computer and there were 300 in the last year ! ! ! So they

are gonna call each and everyone of them and see who's interested and then

send them flyers....

Also I gave them to my 02 guy to hand out....He sees like 15 CF patients a

week for 02 fill ups.Plus all the other patients (under 40).He swears some

have Cf and are just disdiagnosed.

Anyways,this Tuesday coming up is our Teen Meeting (12-18) and we plan on

having a basketball game, eating pizza and have a " Moments of Relection "

period, and then a class on Exercise.The support group is held at a huge YMCA

camp.

We will have " Moments of Relection " every meeting and what that is, each

person has to think of a time when they were tied down because of their lung

disease whether it be from a neb treatment, CPT, etc or something that

happened or a thought that occured b/c of their lung disease that made them

think to themselves like :

" I saw this guy I really liked but when I went to talk with him I went into

a coughing fit and he laughed at me. " They would then go on to talk about it

to everyone about how it made them feel etc.Or something like this :

" My friend and his dad asked me to go camping this weekend but I ended up

being admitted to the hospital for a tune -up...Why does it always have to be

when I am looking forward to something "

Or even yet :

" I skipped my neb tonight....like I did the last few nights. I mean I just

felt like I could be doing something else at the time.Even though all I was

doing was sitting around. "

These are all things that happen to people with lung disease and this way

they can share it with others.....

Then of couse we'll have a 45 min class on something...Like this week is

Exercise and whatnot.

But the best part is from 6:30 until 7:30 we'll do an activity like sports,

swimming, boating, horseback riding,team building,etc.

It'll be fun for everyone.

Then I have been working on donations for the retreat this summer....and

getting that all straightened out. I cannot wait to meet everyone that is

coming. I have never been rafting before and it should be a blast. Plus cook

outs, etc. I know the medical personnel coming are super excited about it ! !

!

Our Adult meeting ..ages 18-40ish is April 22nd...

Anyways, now for my health...its poopie. I went with a friend for her to get

a dress for a wedding and just felt like crap buy the time we got back.My

stomach is all upset, I have no appitite, my head is stopped up, I have a low

grade fever and chills,my chest is comgested and I have an Increase in a SOB.

My poor sinuses....Ughhhhhhhhhh

I though it was allergies but now I am not sure....I think its more of a cold

now....

I need to go in for a tune up but need to wait until Wed of next week

....thats after the Tuesday support group meeting.

I did just get a new concentraor..its really neat.And so quite....Much better

than my old one...I have the concentrator hooked up to my Bi-pap and breathe

of my Liquid during the day.But my Helio's is still being a Huge problem.I am

pretty sure its broken.They are supposed to come and give me a new one. They

better do it tomarrow.

But I did hear of a new Helio's system coming out soon that will go up to 6L

like the Sprint one does.

Also the 02 guy said there is this new portable Concentrator that is in a

suitcase like thing and runs off of batteries ! ! ! ! Or you can plug it in

and use it....Oh man....

But he said 02 companies or at least Apria don't have them in strocjk...you

have to buy them....

Anyways thats it for right now....

Becki

YOUR FAVORITE LilGooberGirl

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