Bawling at the Arthritis Luncheon

[Guest guest]

Hi all-

Just thought I would share this story with the people who can

understand

I attended a luncheon yesterday, sponsored by my local Arthris

Foundation Chapter. Table Captains brought potential business donors

to this one hour informational lunch. Even though I had no big dollar

givers, they asked me to come so I could chat with people about our

experience. I was also prepared that I might be a " back-up " speaker

in case one of the presenters was unable to attend. When I got there,

I was shaken from getting bad lab results and news from Caitlin's doc

(separate post). The coordinator saw me and said " Great! Glad you're

here! You'll be speaking first! " Well.... After a shaky start and a

few deep breaths, I made it three or four minutes successfully -

statistics, our personal story etc. Near the end of my talk, when I

was talking about how important research dollars are, and I listed all

the drugs Caitlin has failed - I lost it. I'm not talking a gentle

rolling tear at the corner of my eye... I'm talking gasping, chest

heaving crying! And I just kept repeating.... " we need more money for

research! We need more doctors. We need more money for

research...for my daughter to have a pain-free future without

disability " I thought they were going to send the men in the white

coats to drag me offstage! Instead, the 125 or so people waited until

I could finish with a feeble thank you and drag my butt back to my

seat. The other two personal story presenters cried as well, so

apparently, I set the tone for the event!

Afterwards, I wanted to crawl under the table - but I had a lot of

people come up to me to talk. I'm not ashamed at all..... if anything,

it cracks me up, because I have sort of lost my ability to cry easily

these last three years. And of course, the chapter coordinators

couldn't have been happier. There were donors from Coke and Wal-Mart

and I'm sure they got an earful!

It will be awhile before I try that again... but for the record,

Maybelline Great Lash Waterproof Mascara really works!

Colleen (mom to Caitlin, 6, systemic)

[Guest guest]

-Hi Colleen,

I was so inspired by your willingness to speak to potential donors,

especially when you are so busy caring for Caitlin. I would have

definately been bawling right along with you. I use to have some

warning as to when the tears would surface, now it seems like they

show up out of nowhere. Here I was sitting at my desk today, when I

was reading Vals post about Robbie and tears just started streaming

down my face. A little embarassing for me when the boss walked in!

:-)

You have done a great thing by sharing your story and I wanted to say

thank you.

P.S. I saw that you mentioned Caitlin had to do some kind of 21 day

pred pulse??? Is that the same thing at a short term dose of pred with

a taper every few days?

I don't know anything about the infusion that you mentioned. I hope

that it will work out if thats the route that you decide to go.

(aundrea 9 systemic)

-- In , " bookissmom " <bookissmom@y...> wrote:

>

> Hi all-

>

> Just thought I would share this story with the people who can

> understand

> I attended a luncheon yesterday, sponsored by my local Arthris

> Foundation Chapter. Table Captains brought potential business

donors

> to this one hour informational lunch. Even though I had no big

dollar

> givers, they asked me to come so I could chat with people about our

> experience. I was also prepared that I might be a " back-up " speaker

> in case one of the presenters was unable to attend. When I got

there,

> I was shaken from getting bad lab results and news from Caitlin's

doc

> (separate post). The coordinator saw me and said " Great! Glad

you're

> here! You'll be speaking first! " Well.... After a shaky start and

a

> few deep breaths, I made it three or four minutes successfully -

> statistics, our personal story etc. Near the end of my talk, when I

> was talking about how important research dollars are, and I listed

all

> the drugs Caitlin has failed - I lost it. I'm not talking a gentle

> rolling tear at the corner of my eye... I'm talking gasping, chest

> heaving crying! And I just kept repeating.... " we need more money

for

> research! We need more doctors. We need more money for

> research...for my daughter to have a pain-free future without

> disability " I thought they were going to send the men in the white

> coats to drag me offstage! Instead, the 125 or so people waited

until

> I could finish with a feeble thank you and drag my butt back to my

> seat. The other two personal story presenters cried as well, so

> apparently, I set the tone for the event!

>

> Afterwards, I wanted to crawl under the table - but I had a lot of

> people come up to me to talk. I'm not ashamed at all..... if

anything,

> it cracks me up, because I have sort of lost my ability to cry

easily

> these last three years. And of course, the chapter coordinators

> couldn't have been happier. There were donors from Coke and

Wal-Mart

> and I'm sure they got an earful!

>

> It will be awhile before I try that again... but for the record,

> Maybelline Great Lash Waterproof Mascara really works!

>

> Colleen (mom to Caitlin, 6, systemic)

[Guest guest]

Hi Colleen,

Just wanted you to know that ALL OF US so appreciate what you've done

and we are very proud of you, for getting up there and sharing your

child's story. Our story. You did great! Thank you!

Aloha,

Georgina

bookissmom wrote:

>

> Hi all-

>

> Just thought I would share this story with the people who can

> understand

> I attended a luncheon yesterday, sponsored by my local Arthris

> Foundation Chapter. Table Captains brought potential business donors

> to this one hour informational lunch. Even though I had no big dollar

> givers, they asked me to come so I could chat with people about our

> experience. I was also prepared that I might be a " back-up " speaker

> in case one of the presenters was unable to attend. When I got there,

> I was shaken from getting bad lab results and news from Caitlin's doc

> (separate post). The coordinator saw me and said " Great! Glad you're

> here! You'll be speaking first! " Well.... After a shaky start and a

> few deep breaths, I made it three or four minutes successfully -

> statistics, our personal story etc. Near the end of my talk, when I

> was talking about how important research dollars are, and I listed all

> the drugs Caitlin has failed - I lost it. I'm not talking a gentle

> rolling tear at the corner of my eye... I'm talking gasping, chest

> heaving crying! And I just kept repeating.... " we need more money for

> research! We need more doctors. We need more money for

> research...for my daughter to have a pain-free future without

> disability " I thought they were going to send the men in the white

> coats to drag me offstage! Instead, the 125 or so people waited until

> I could finish with a feeble thank you and drag my butt back to my

> seat. The other two personal story presenters cried as well, so

> apparently, I set the tone for the event!

>

> Afterwards, I wanted to crawl under the table - but I had a lot of

> people come up to me to talk. I'm not ashamed at all..... if anything,

> it cracks me up, because I have sort of lost my ability to cry easily

> these last three years. And of course, the chapter coordinators

> couldn't have been happier. There were donors from Coke and Wal-Mart

> and I'm sure they got an earful!

>

> It will be awhile before I try that again... but for the record,

> Maybelline Great Lash Waterproof Mascara really works!

>

> Colleen (mom to Caitlin, 6, systemic)

[Guest guest]

Colleen,

How commendable for you to speak to a crowd about the subject that

tears your heart out every day. If you hadn't cried, people may not

have truly understood your incredible pain over Caitlin. In

particular, that Humira's not cutting it anymore. I am praying

really hard for you guys and for finding the next step.

Stacia and Hunter 8 systemic, iritis