A GLIMPSE INTO THE LIFE OF.....

me, my son, and those like our family.

Presidential Volunteer Service Award

A BIG ol mouthful, isn't it?
Wellllll! My Vice President is receiving one. She was nominated at the federal level which is a different distinction than receiving it from an accredited organization.

I'm giddy!
She deserves this recognition for her time and dedication more than anyone I know. She's receiving it at the White House no less. Not sure who from, but at the WH all the same. When? During our trip there together next month. I wrote the letter for the nomination that was REQUESTED (oooooh ahhhh!) from a WH staffer. So while there, I get to see her recieve this very special distinction.

That's right kids! I'm heading back ot the White House. By invitation again.
Very exciting stuff!!!!

Work is progressing so quickly nowadays I can hardly stand it. I look forward to and dread each day because I need help, I need staff, I need an office outside of my home!!!!

But we're getting there and each day we get a teensy bit closer to the big goals.
yippeeyippeeyippee!!!!

Better pix than last time to follow soon!

BACK TO WORK!

Woof! You sure gotta climb a lot of steps to get to this Capitol Building here in Washington. But I wonder who that sad little scrap of paper is?

I'm writing my first bill.
Yes, I'm writing a bill.
And I'm looking up to Capitol Hill.
Well, it's a long, long journey
To the capital city.
It's a long, long wait
Just to make it to committee,
But I know I'll amend the budget someday
At least I hope and pray that I will,
But today I am still writing a bill.

Yes folks, we are finalizing our Political Agenda!
Writing a proclamation, that will pass through easily and National Eosinophilic Awareness Week will live forever because of it.
THEN! The bill and hosting Capitol Hill Day (May 17th tenatively)

We're looking to amend the 2008 Budget to include an appropriation for some research dollars for our little disease group. Very little has been given to this disease, especially when you compare it to less common diseases recieving far more. (Crohn's is a great example)

ON TOP OF THAT! We're also going to the CDC (Center for Disease Control) and HHS (Health and Human Services) and applying for a new ICD-9 ICD-10 code. These are the codes your doctor checks off on your diagnosis sheets. Our disease isn't listed. It's needed for numerous reasons. First and foremost, it helps to have a REAL diagnosis- legitimizing the disease- yeah, that's a good thing. Second, insurance coverage. Yep, that's good too. Third, helps us actually count just how many people suffer with this disease. With the coding we can come back and make our case for a multi-center epidemiological study which will give insight into the diagnostic rate of this ever-growing disease group.

I've got to learn a whole new set of acronyms!!!

We're applying for separate coding for Eosinophilic Esophagitis (EE), Eosinophilic Gastroenteritis (EGE) and Eosinophilic Colitis (EC). I have strong doubts on EGE and EC, but we're pretty confident in EE getting through (this year).

So- that's a lot for the first six months of the year.
My whole way of doing business is about to change because I am actually entering the political arena- why does the Aerosmith song j-j-j-jaded keep going through my head? Perhaps it's because I'm SO green, or perhaps it's because I know in a year I won't be the same lady- either way, right now, I'm tremendously excited!
See what happens when mommies get mad?????

A month already?

Okay- here's the sad story of my last month. It's been a doozy.

Part 1, I take sick with that NASSSSTY little stomach bug that swarmed around the USA. It catches me and holds for 36 hrs. I lost 6lbs. OUCH. Yes, the hard way. Wake up midday feeling somewhat sweaty and icky and very, very weak- go to my computer and lo! What is this? I didn't change my background... what the??? NOOOOOOOOOO!
My husband and daughter wiped out my ENTIRE harddrive.

They did a neat little trick- managed to wipe it all out.
I have FIVE years of charity work on here. Last back up disc was created over the summer- I KNOW. Off the computer goes to Mr. Wonderful Computer Whiz. He spends three days on it- retrieves my files. 50 gig of this.

Each file is labeled.
.doc
file 1
file 2
file 653246

.jpg
file 1
file 2

etc etc. I have to go through everything one by one. There are duplicates, I had my charity backup disc, so I have to review and compare each file. One by one. 50 gigs worth. 22,000 jpgs alone. I have rename each one. It's months of work in front of me. At least I had the back up disc- and now I have an external hard drive. Oh, the hard way of doing things.

Part 2.
Yes, Charlie is sick. His biopsies were bad. Today we start the prednisone wean. He's puking again. Not a good time. I'm not happy at all with this. Methotrexate- (read: chemo) starts next.

Part 3.
My stepdad is dying. My mom is leaning on me hard. It's rough to watch them both suffer. I've not always been a superfan of his- but no one deserves to suffer. He's been up and down for some time now. Far too young (57) to deal with the blow he's been handed. Cancer sucks.

Part 4.
My neighbor across the street was diagnosed with cancer 3 weeks ago. They gave him 1-2 years. They have five kids- youngest is 2 months old. He died 3 days ago. Did I mention cancer sucks?

Part 5.
Move the couch a week before Christmas to shampoo the carpets. What do we find? MOLD! With an asthmatic/allergic/eczema daughter and Charlie being highly sensitized to mold... not good. It was there since the last shampooing. Carpet was still wet when we put the furniture back.

SO! we, in infinite wisdom decide to recarpet. Well, there's mold under the couch. New furniture is needed too. If we're doing all of that- hey! Why not paint too. Borrow the carpet swatch, go pick out paint- I painted the entire first floor, stairwell, and upstairs hallway in 2.5 days. It was a lot. Go to pay off the carpeting (hell yeah! no financing on that part!) and uhoh, they don't have it in stock. It's now 5 days before Christmas and everything we own for the downstairs is in the garage.

I go ballistic. Then I get calm. Then I go ballistic. Then I laugh. My mom was there- she wants to jumps in, I give her the eye, she lets me handle it. After what started out as a patronizing conversation ended with them upgrading us, by a lot, better padding too. It worked out waaaay to our advantage. Carpet arrives the next day- oopsie. Miscalculation. Only three rooms can be done. Can't get the rest (which we still had to buy- at a negotiated rate lower than the carpet costs- still to our advantage) so the stairs and duh! my office are left out.

Big mistake. Should have left the formal dining room out and did the office. Duh. Computer? Work? Pshhhh what's a few days. I'll tell you what it is- ETERNITY to a workaholic!

Get through Christmas- and then New Years. This last week, FINALLY it's all in. Now I get to play catch up for a month of minimal internet access. GOOD TIMES!
It looks great. The house was all white and gray/blue before. It's now forest green, tans, beiges etc. MUCH nicer. No mold. YAY for that!

I'm exhausted... and haven't been working-working. I've got tons to do- missed my online buddies. Normally I love the holidays, but this year, I'm sooooooo glad they are over.
Hope everyone else had a great holiday.