Q`ue Pasa

[Guest guest]

>>

> Somtimes I still feel alone, particulrily lately as I have not been

> able to get around so well, but just reading them again reminded me

> that I am not alone at all. Thank you all so very much for sharing

> your hearts with me. I know that I am not alone, none of us are, we

> are all kindred spirits and that can be a lot closer then the nearest

> neighbor. I will keep them forever.

>

To PAI Members

I can relate to some of what Chrissy is saying. And I am very happy for

her feeling the way she does about the board. IMO I do not share any of

her feelings except the feeling alone one. I am not sure what has

happen in the last few months with members of the board and some things

that have happened between some members.

Maybe all my different illnesses are really wearing me down, (Don't

mention anti-depressant as I am on them and my Shrink tells me I am on

an even keel'

Here I am at 55 being told by my Doctors that I will never work again

and SSDI concurred with that. I have no energy, sleep like a bear,

short of breath and a few other things. None of my Drs thing anything

is amiss!! How many more years can I live this way?

Any how IMO I feel very left out in the cold by this group. Hardly ever

get any post to me even when I ask for help. My poor mind feels like

this group has an A list and I am not on it,

There fore I will be absent from the board until I can clear my mind

and get a handle on the multitude of problems that are wearing me down.

I do appreciate the support that use to be there and Pray it will

return. Any comments that you want to send privately can go to my PEM

(cjajannello@...) Espesically if I have done something to

feel like I have been BLACK BALLed. Or if I have done anything to upset

someone. That is not my intention.

Hope all feel better than me !

Cyndi Jannello in York SC

[Guest guest]

Dear Cyndi,

I am very guilty of not corresponding with the group lately. That does not

mean I do not care. I just like to be postive and I have been pretty sick

lately. But one good thing, I seem to be heading upwards now, which is great.

Finally !!!!!! I also felt a change in the group several months ago. It seemed

like the bombardment from the medical community. I come here to get away from

them. I like to share with other CP people, in hopes of making someones

journey with CP a little easier then I had it. I am saying a little because this

journery is sure a rocky road. I try to encourage everyone to NEVER give up the

hope and fight. One thing that bothers me though, I keep hearing lately in some

posts that there is no cure for CP. That it WILL be progressive. In some cases,

yes I agree with that statement. But, and a huge BUT, not ALL cases. It depends

on why we have it and if we can stop the reason for it happening. No one should

EVER give up hope that you can make your life

better. I hope to start posting again real soon. But know that I care and I'm

here anytime. E-mail me off the boards if you want. I try and get on the

computer every few days, just to read posts. Once feeling a bit more better, I

will post more. I need to let everyone know there is hope to stop this madness.

Please don't EVER give up hope that you can make your life bettter. My

suggestion to you is to go to an infectious disease MD and tell him you are sick

as shit. You are dragging like there is no tomorrow. Find someone who will dig

for you. What ever it takes to find out why you are so sick and tired. Yes we

have pain from the pancreas when it is flairing, but something else is probably

mixed in. I know my MDS tried to blow me off and blame the pancreas.

NO....NO.....NO.....WHAT ARE YOU NOT HEARING???? SOMETHING IS SOOOO WRONG. I

KNOW MY BODY. PLEASE HELP ME TO GET MY LIFE BACK. I KNOW IT MAY BE HARD TO FIND,

BUT PLEASE FIND IT. READ MY LIPS, THERE IS SOMETHING VERY WRONG, PLEAAASSSEEEE

FIND IT!!!!! Please find an MD who will help you, travel if you must to find the

perfect MD. One who will listen, believe you and help. They are out there. When

I finally found out I had Hep C, I knew we had the piece of the puzzle that was

missing. That was my favorite day, Finally!!!!!! But

it took several years of begging and switching infectious Mds too. Please

never give up the fight. I'm here for you when ever you need me. Hang in there.

Love,

w

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