HEP C lunch at Dixie Crossroads 10/6/07

[susan400]

Okay, everybody.  Who ever is definitely coming, I'm going to make that phone call to Dixie Crossroads on Thurs. Sept. 20th.  Here's the names that have responded to me.  If you need to cancel, or if someone else wants to come, I need to have you reply.  Those of you who are coming, please reply anyway so that I can verify this with you.

Dixie Crossroads
In Titusville/Mims area off of Exit #406, one exit north of Hwy.50 + I-95.   See their web site for better directions.  

Oct. 6th  - Sat. - at 2:00 pm.   Check in with the hostess and tell her that you are meeting with a group of people for MedHPC   (to keep from having to say hepatitis if you aren't comfortable with that).    I figured just saying MedHPC would suffice.

Here's my list:

Amirtracy1  ?
Sparkle Girl & Hubby
Dperry  ?
Florida Mouse & Hubby
SJL - Sandy ?    
Lady Lauri
Seabean & a friend
Pasoperson?
Me

[Lady Lauri]

but ya gotta come after dark....for the effects :}
We can swing it if it's the camp place I am thinking and as none of us will have to worry about that ol' 'drinking and driving' problem anymore :}, should work out.
          off to bed & dream land, no hep c there , LOL

[Lady Lauri]

Back online in Ocala! It's also horse sale and 'ship the horse's' week so really busy while feeling pretty rough this week!
I am actually having my party the Sat. after halloween-for the 1st time ever. Need that extra week and all are game for it, so should all still be up. Going awfully slow this year tho as so....h*ll...you know...FATIQUED! :)
Hope you all can get by here too. Please send all  the details on the camp out. If my memory is working right ??? I think it's really close to me.
Dragging to bed after I post on the 'next Fl. lunch' post. There's so much here I want to post on and just too busy or tired!
Let me know the details on camp out.
                                                        nite, lauri

[seabean]

Sure had a nice afternoon at Dixie Crossroads with the three of you and the two Bill's:)  Susan, you picked a great restaurant.  It was real fun.....can't wait for the camping trip.  Susan, you should go!

Lady Lauri------Hope to see your Halloween House/Yard when we are in Ocala Nov. 10th.
Judi

[susan400]

Lauri, Pasoperson doesn't come on here often, but I'll send you her email address over at your message site for medhelp.  She does have something to do with Pasofino horses, in fact, that's quite a big passion for her.  She drives a white pick-up truck with Pasofino horses on the side of it!  

I'll go over to the message site now and send you her address and let her know that you may be emailing her, okay?  

Susan

[Lady Lauri]

Got on dial up again! But can't on the lap top so can't sit my tired arse in bed online. (whine, whine!) I am over this DSL problem, 4 days out now! As Pasoperson is in Ocala, sure she is having this problem if she has Embarq???
Susan...was going to get your lunch anyhow for setting up so got to do it that way:) The guy was a bit ditzy, than figured it out! Than I forgot to say your real name but figured you'd figure it out!
So sorry I missed it, love seafood! Funny tho, at work @ 2:30 I got really sick, like the worst yet, dragged home by 4:30 ( that job is 28 miles) and just fell into bed, so guess it turned out for the best.
Really hard to figure out if you have a real 'bug' or if it's the drugs, ya' know?! I have done really well thus far so not sure.
Definalty would love to meet you and Paso for breakfast, please let me know. I go to Gainesville a lot with tx there too. Would love to do that. As Sparkelgirl said, has to be great meeting others with this and after talking to so long.
I can go to the campout , (inviting myself:} but as I live here, won't 'camp out' :) It's very close to me, maybe 5 miles. My halloween house/yard will probably still be up, ( takes a month to do, I take a month to tear down:)! maybe some would come by, it's pretty awesome. If any hurricanes pop up, my house is open :}
So glad you all had a good time. How many made it?
Pasoperson......does your name have anything to do with Pasofino horses's? Just curious as we ship a lot of them (on planes) and Ocala big in horse's.
Hope all are well today, hitting the pillows AGAIN!
                                                                               Lauri

[Sparkle Girl]

Ladies, I had a lovely afternoon and feel so empowered just being with others who share the battle  ..... Lyn

[susan400]

THANK-YOU!  THANK-YOU!  THANK-YOU!   You are so-so generous.  You did not have to do that, but it was so very much appreciated.  What a nice surprise that was.  I would do one in Nov. around the first week, if I was going to be in town.  The others are going to be having the camping trip in Ocala on the 2nd week in Nov., you should check with them on that, maybe you can go to that?  Florida Mouse and Sparkle Girl have the info on that.  But, I definitely would like to do lunch again.  We can go somewhere else next time, if somebody wants to pick a spot.  The first week in Dec. is good for me and I can do a Sun., if that's better for everybody.  

Florida Mouse's hubby took a picture of the 4 of us girl-heppers that were there.  Once he's had a chance to convert it from cell phone to internet and then, I get it, I'll use my picture on the Medhelp profile and everybody can see us together.  Maybe that will inspire others to want to join us in our fun, the next time.  

I'm so sorry that you had to miss this one.  I meet up with PasoPerson for breakfast whenever I make my trips up to my Mom and Dad's place in Lake City, maybe you could join us sometime and that would be easier for you?  She's a really nice friend who has Hep C, she lives up there in your area, in Ocala.

Susan400

[FloridaMouse]

I  had a really great time at lunch!  Thanks Susan for organizing it.

Mouse
Genotype 1a, S3, G3
Finished 48 wks of tx 4/2007
Relapsed 9/2007

[Lady Lauri]

  Have not been able to get online for 3 &%$#@# days in Ocala, Belleview area. Embarq DSL is down, really po-ing me off. Had gotten dial up to work, now that won't??? I am at my sisters real quite to e-mail this.
I'm out :{ , As I am on my way to work, my choices were 10:00 to 3:00 or 3:00 to 10:00, either way it screwed me as over two hour drive for me. The girl filling in for the girl filling in for me decided ...."Oh no, this is the weekend of the Alice in Chains concert I have tickets for , not next weekend!" and I really owe the one that was working for me. She's been splitting days, filling in all year.Very po'd at the told us YESTERDAY as she has our phone #'s.
Susan, you'll have something there for you for setting all this up :}
Really sucks and the next is in.... Nov. or Dec.? Any chance of doing it on a Sunday? (I never do Sundays).
Really sorry, was going to fax a pic of me waving and have her set it at my seat :}.
Talk to you here later, have to get to work by freaking 10:00.
                                                                      LL

[susan400]

I'm glad the you're planning on making it to lunch.  Lauri, I know about the driving....it's hard to stay awake on them road trips.  Seabean, I'm sorry that your friend can't come.  I'm looking forward to meeting you though.

Susan

[seabean]

I'll be alone, my friend's Mom passed away and she won't be able to make it.  I'll be in Melbourne on Friday for the funeral then see everyone on Sat.
Judi

[Lady Lauri]

Hi Susan. I'm still on as of 2nd shot yesterday. not doing too bad at all. May bring one of my sons as per the drive and fatigue. @ 2 1/2 hours from here. Sad.... used to do half way or more to Colorado with no problem, now 2 hours concerns me!
Don't know too much on your other comments on tx, neupogen, etc above as just starting here and know you have been thru so many tx's. maybe can learn more on it all Sat.
                                                                    Lauri

[susan400]

This is just a reminder...checking in...etc.   I hope all of you who decided to go, will be able to make it next Sat. 10/6 at 2 pm.   Remember the reservation is under MedHPC.    

I went to my last Prove 3 appt. yesterday.  I heard that the Vertex people are discussing offering rollover to the Group C people - which would mean a change in protocol, but nothing is certain yet, they are just discussing it.  I'm totally undecided if I even want to attempt to do it again.  I don't know if I want to deal with the rash again and also, if I can't use the Neupogen and Procrit, I doubt that I'll be able to even stay on it.  It's been 12 weeks since being pulled out of the study and my white cells are still low.  Study nurse told me that I'll need to have my regular doctor continue to check this and that if it gets any lower to contact them right away.  If I wasn't able to get my white cells higher prior to restarting the drugs then it would be obvious to me that being on the drugs would just aggravate the problem.  I'm hoping that they get back into the normal range so that if I did decide to treat again with something that it would even be an option for me.  I really need to have the Neupogen.  Right now, the WBC and neutro's are low, but not low enough to add in Neupogen (since I'm not on the trial, I could conceivably use it, if I dropped low enough to need it), but I'm hoping that it will just come back up on it's own.  I get sort of paranoid about the WBC thing because my cousin died of AML Leukemia exactly one year ago and he was 47.  I realize that leukemia doesn't usually happen in a 'family history' type of thing, but it does make me feel more vigilant about it, I suppose.  He was the same blood line as me because his father and my father are brothers and his mother and my mother are sisters.  We were double-first cousins.  

Anyway, I kind of am rambling.  I'm still up in North Florida.  I get back home on Thurs. and I thought I should check in with everyone.

Susan

[GrandmaA]

Have a great luncheon. Wish I could be there. I'm about 2500 miles away in Calif.

[Andiamo1]

Good idea!  Nygirl might complain when she sees the size of our suitcase though - LOL.

[susan400]

I got a great idea-Andiamo.....  you and Mafaida stuff NYGirl in your suitcase and bring her down here with you!!    Please!!!     Come on, she's small, she's not that heavy....bring her down here!   :)    I am thinking that maybe we could have another one in the first week of Dec.  Somebody else could plan it though next time and coordinate everybody!  Just pick it in the 1st week of Dec. and I'll be there.  

I won't be here in the 1st part of Nov., but somebody want to plan a Dec. gettogether?

Susan

[Lady Lauri]

Oop's, just saw this and forgot ya! (and no brain fog YET!)
David R. Nelson
352-392-7353

his assistant (PA-C)
Thomas C Kinsland
352-392-9300
800-749-7424 Ext. 29300
kinsltc@medicine,ufl.edu

Susie Archer is my trial nurse/coordinator and they have several trials going on now.
Let me know if you get through.                                                Lauri

[Andiamo1]

I am lucky too!

[nygirl7]

Oh what a loss for everybody who is going that they won't get to meet you and Mafalda!!!

I guess that I am the lucky one after all being broke right up here in CT!!!!!!!!   :)

[Andiamo1]

I am also sorry I am gong to miss it.  We are leaving Ct on the 15th of October and should be in Florida by the 20th.  We are taking a slow drive, since I can't drive for too long these days.

If you ever do it again I will try and come if it is during he winter.  In the meanwhile, we are having dinner with nygirl next week, so we will raise a glass of water to you - LOL.

[nygirl7]

God I wanna come!  I've never even heard of Titusville or I'd figure out some way to stow myself inside somebody's suitcase or something!  WAAAAAAA if there was ANY way I could afford it my friend - know that I would be there.

God I HATE being broke!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[susan400]

I'm with you on the South Florida feeling.  This is probably why I haven't been able to bite the bullet and get to see Dr. Schiff.  That and the drive down there.  I am connected in at Mayo.  I may eventually get in to see Dr. Nelson at Gainesville, but I've had not success at getting them to return phone calls or follow-up.  My next step, will be to see if my regular doctor will just contact them for me.  I'm not going to worry about it until probably late fall or after the holidays.  Mostly because I don't really feel like treating and/or being on treatment during the holidays.  I've gotten burned out on treatments and especially since they've never worked on me.   If I do anything, it will probably be some sort of low dose maintenance.

Susan

[cbert]

hello there, just wanted to check in on how to reach dr. nelson, still can't find him on the web site. I will be moving back to ocala area soon and currently am a patient and University of Miami. I really like my docs. but i don't care much for south florida..........I have been on tx twice, peg and infergen..........still didn't clear but gave my liver a rest............

[Lady Lauri]

I am also driving from Ocala and have no problem giving anyone a ride (if ya ride on the back of my Harley?}) Kidding, doubt I'll be taking that 2 weeks after tx starts!
The only concern is , like SJL, I will be just starting tx and won't know for sure I'll go until a couple days before, as per if I am up to it. The offers there just maybe have a back up plan? (hard planning with this stuff, aye?!)

SJL, we're tx-ing at @ same time and same place, Shands. Would you mind sharing some info. with me?                                                                    LL