Cuteus, Cquest, majneni, Giddyup, Whoaisme--Great meeting you all yesterday

Peeing is relieving!
Peeing is relieving!
Lauren

[genedog]

ohhhhhhhhhhhh my god

[DRAGON SLAYER]

I see de-hydration isn't your problem.....LOL

[whoaisme]

Right back at you....you are so right!!
It was great meeting everyone, and hopefully the march in NYC raised some awareness! Hope you had an uneventful trip back! Su

[MajNeni]

It was a great day, getting acquainted with each other, and marching with so many others.  I'd like a reunion next year, and you ALL be clear, ok?
Giddy and donA, please keep us informed about your test results.
I think we got some attention and awareness going... when you put all those yellow shirts together and marching, it made a pretty long line.  Cuteus, have you seen any media coverage? And can you tell about that huge check?
For everyone's information, the chilled drinking water was donated - along with the guys who handed it out - by Peter, who runs "Sale & Pepe" at 1 Exchange Plaza (back corner of 55 Broadway) near Battery Park, Ground Zero, Statue of Liberty Ferry, etc.  If anyone is visiting near there, say hello to Peter, thank him for his generosity, and patronize his restaurant; reasonable, nice food, incl. great pizza and fabulous coffees.
Maj Neni

[rearfang]

Thought I should clarify the "peeing" comment (though I know many of you can relate even w/o explanation). The chant we were supposed to say at the march was "C-ing is Believing", but during the march, there were dozens of us "defectors" lined up in Starbucks waiting for the bathroom. My sister and I got to laughing about it and I came up with my own version...
Lauren

[cquest]

We should have been chanting your slogan rearfang! If you ever want to get together just give me a holler since you are so close.

Cuteus, there was a $480,000. check from the city donated to LOLA that will be matched by federal funds for a total of $740,000. They needed a mic for those people that were speaking because you couldn't hear them unless you were right there, even the media had to get closer.

I really enjoyed myself however, I am BEAT today. I'm glad I dragged myself out and met all of you!  

Now for the bad news, the doc took me off the meds...I have to say, I thought the sx I was having Fri. nite were not a problem since they pretty much passed but the finger tingling together w/ my chest doing a little dance called the 'tighten up' plus the cough (that is worse today) is what did it I guess...I have an apt. on the 18th to discuss it. I will definately make him do a bx then. I will miss the appetite suppressant effect...I would have REALLY starved yesterday otherwise!

That Stromboli I had at the restaurant was delicious! How was your pizza?
Cin

[friole]

That's awful.  You have only had one shot, right?  Did he order a blood test ?  I am really surprised you have been pulled already.  Your body must be extremely sensitive.  Yes, push for that biopsy.

Sound like you all had a ball in NY.  Never saw a thing on my news, not that I am surprised. I am glad you were all able to go and put that face on hep c

Kathy

[cquest]

Yes, I just took my 1st shot this last Fri. and I am VERY sensitive to any medication at all...however, I was surprised I wasn't sicker from this stuff, I feel pretty good actually...But it figures that the few sx that they make you 'contact your doctor immediately' for are the ones I have...The cough is anoying...
Cin

[cuteus]

you were having a rash also, or was that rearfang? WHY is he pulling you off? what was his reasoning? If he has not done a cbc to check the counts and you are not having severe reactions, why is he been so over cautious?  I really think you need to look for another dr, I remember mentioning this to you before.  He does not seem to be on top of things effeciently. Denying you a biopsy, stopping meds immediately, you need better.  I went through three GI's. The second GI started me on tx and the third continued and finished it. Shop around now, please.

Rearfang, forgot DonA!?
Don Alfonso; good luck on that first PCR, don't keep us waiting with the results!
great meeting all of you.

Chev, next one, make plans! Plenty of places to stay over here. How is your garden doing?

[cuteus]

I got some pics mailed to me by Sybil, they came out pretty good. The steps of City Hall filled with yellow shirts.
It was a well organized event, and meeting all of the faces of hep c behind the monickers was priceless.
Maj neni, I could not check the news last night and was watching the morning show in Univision but saw no coverage. They have some weekend show that might include the activities, but I will check their site and find out if anything will be said.  What check?
I made it back to Penn sta with 10 min to spare, so I did not have to go Peak.
It was a very rewarding and satisfying day. Definetely should plan for next year.

[whoaisme]

Cin- wow I don't beleive it! what a surprise, and you seemed to be holding up pretty well yesterday! Maybe its not a bad idea to search for another doctor. It seems awfully quick to just stop, but hey, maybe they know something I don't. Well, don't give up trying to find a way to get treated. I will be thinking of you!
All-It really was great to put names and faces together....the pictures are good too, although they don't do justice to the flood of yellow shirts streaming down the street..with, I might add, the police escorting us!

[cuteus]

hope it works:

http://tinyurl.com/7cneq

[stc1993]

The pictures worked I had to copy & paste the link in the address bar. A nice group photo.

Monte

[cquest]

Yep, I am the one with the rash on my hands which is somewhat anoying...I didn't even talk to the doc, he left a message on my ans. mach. at work that I got this morning, then when I called back, I got a nurse who said 'stop taking the meds now' and I believe it is because of the numbness and tingling in my hands that Fri. night plus my heart kinda did a big thump, small thump and then a twist...which was the end of it so I didn't think too much of it except 'this better not be a freakin heart attack for cryin out loud!'and it was over as quick as it happened. Maybe he thinks since my cholesterol is so high (just like the viral load, everything is high for me) my vascular system is constricted...? Either way, I think I will find somebody in Albany for a 2nd opinion like you said and maybe a cardiologist while I'm at it...Like I told somebody once, I'm like a car that looks like it runs good but the frame is rusted out and the engine is shot! It's always somethin'...but I still got a lot-o- fight in me!
Cin

[donAlfonso]

Here I am, late as usual.  It was great to meet everyone on Tuesday.  Wish I had made myself known earlier, but I'm pretty shy. It was good to participate in this event.  Awareness of Hep C needs to be increased, as much for the purpose of increasing funding for research as for testing and treatment of those already infected.

Personally, I thought the event was great until we got to City Hall, where I wore myself out walking to the fountain, to the left gate, the right gate, back to the fountain, etc.  But that is not important.  What mattered was seeing those yellow shirts on the steps of City Hall.  But oh yeah, did it have to be yellow?  For me the association is not a pleasant one.  When I was infected (1970), I got really sick, last rites from a priest (I'm not Catholic), and hospital staff hated to enter my room because they thought I must be super-contagious.  The nurses aides would put my food trays on the floor and shove them towards my bed, and called me "China man" because I was glowing yellow.  Of course, I never ate anyway.  Oh hell, I'm a cyclist, I'll just think of the Maillot Jaune and Lance next year!

Cuteus, thanks for introducing me to everyone and making me feel comfortable. Glad you made your train.  Maj, thanks for the photo and company on the subway.  How did the teddy bear go over?  CQ, sorry you're tx got derailed.  I'm sure you can get back on track. Rearfang, I was hiding most of the time, think we only met right at the end after I finally told Cuteus who I was.  Next year I'll wear a red cap too.  Whoa and Giddy, it was so funny to hear that you know Jamesport!

What a crew.  Peace, love

dA

[cuteus]

I called LOLA and asked them about the video, and they said it was aired that same day in the 6 o'clock news! darn! But I asked her about the weekend shows and she said that on Sunday, the 14th at 7 am, they might re run it. The show is called Weekend today New York or soomething like that. It is Univision. I am going to try and set my VCR. Our last chance! LOLA don't have any pics at their site yet. They might try and get a copy of the video from the station, I suggested that if she does, to set it up to play at the site. Maybe they need a geek to help?
don't forget the 14th!

[cuteus]

maybe the LOLA site has those photos! I am going and check.  The Univision did have an article on the March at their website, in Spanish, but no pictures. What did they do with the video they shot???

[cquest]

Figures they showed the video when we were all still just getting back home! Somehow I knew you would get on it cuteus!

Rearfang, I found a couple of them in my CDPHP par prov book, is it Albany Medical Center Gastro Group or Albany Gastro Consultants by any chance? I was thinking about asking you who you see so thanks for offering...yes, give me the # if it's not one of those guys.

Woeisme, I DID feel pretty darn good Tues. and have been all along (for the entire whole whopping 6 days) but since I haven't really talked to the doc about it, I can only guess he's afraid I'm gonna drop of a heart attack with the next shot or something...That's the ONLY thing that makes any sense at all...And I have to admit, when my fingers started tingling and went whitish (yellowish actually) it crossed my mind...you know when your heart is struggling, it shuts down the extremities to keep the blood nearer the vital organs according to my nurse friend....makes sense I guess.

Anyway, the pics came out good Cuteus! Thanks for putting them up. I enjoyed the day and being with 'our own kind'. I hope at least a few onlookers thought about it and will get tested!
Cin  

[doll face]

Thanks for the pictures. I wish I could have been there with all of you this year, but will difinately try to make it to the next one. I am so proud of all of you.

[cuteus]

well, I just came back from the delphi forums and one very outspoken person is stomping all over the day's activities.  the lack of unity among hcv groups is why noone is listening to us. ggrr

[rearfang]

Cindy,
That really sucks!! I'm with cuteus about the finding another dr. It does seem premature to take you off tx so soon. I go to Albany Gastroenterology group. Let me know if you want their phone number.

Don,
So sorry I left you off the list-- an oversight and no reflection on my love for ya!!
Lauren

[cquest]

Yeah, I thought I caught a glimpse of you in one of the photos marching along incognito!!! Now we know each other and it's all good!!! You are amazing to have recovered and still be pluggin along with the best of em!!! And yes, the waiting, the 'turn around!' 'go back!' 'they won't let us in!' nonsense probably drove a lot of people home since we were tired anyway...I think City Hall had a 'master plan' to make the crowd look smaller on film....sneaky bastards...

And Cuteus, was that person on delphi actually AT the march?  You know the saying 'if your not part of the solution, you're part of the problem'...double gggrrr
Cin

[cuteus]

I don't think she was, there are big ego trips going on in the delphi forums, big egoes, big time. they kept focusing on the clean needles poster as if that was what the march was all about and nothing else. I was appalled! then another bright light kept focusing on the "uniforms" we were asked to wear (shirts) and the color. so petty! I am not crazy about yellow and orange, but those are the colors assigned to Hcv by who knows who? does anyone know the story behind the colors?
I was repulsed by their comments and left them to their bright light bulbs above their heads, I think they might be shorted out!

[cquest]

They were just jealous that they were too dim of a bulb to think of going to the march themselves! Next time that happens just IM me and tell me where you are (and who you are) and I will jump in. I lay away nights thinking of snappy comebacks so let me at em! I got your back, girl! In fact here is a phrase I coined so write it down: if you have an enemy at work that suddenly needs your help and this is your chance to let them twist in the wind say 'You're a star, let's see how bright you are!' HA! how's that  for snappy?!?!?! I wished I'd thought of it BEFORE I needed it but if I can help others my work is done... Really, the snarky trolls need to be stopped so anywtime sister, just holler!
Cin

[MajNeni]

Hello,
just got back.  Cuteus, thanks for the pictures! I put a few up at HotHeps (groups msn com), but your photos are better.

DonA, the kid is very cute, 9 months old, and he loved the teddy bear that marched with me.  Of course, I loved the kid... stayed so long, I barely caught the later bus, got home about midnight... after 5 am start.
dA and Giddy, I'll be looking for your results, kind of holding my breath!  Yikes, dA, last rites?  My daughter had very bad hepatitis from mononucleosis; ALT 500+.  She was yellow like that, she kind of lit up the room.  It completely resolved.  I am hoping both of you will soon bounce back; and will be biking, and out of the "hotel" respectively.

Cin, this is a temporary setback.  My second try was just one shot before I got yanked; then I changed docs, and the new doc treated me successfully.  He monitored everything closely, frequently; tweaked all the meds; listened to me, talked to me -more at the beginning, less farther along; but he also had a wonderful GI/NP, and she took her time with me.  You have to squeak, but I don't think you'll have trouble in that department anymore.  Rearfang's doc sounds good, and isn't too far away.

Rearfang, you are still on your feet, and well on your way.  Lovely to meet some of your support team.  Things start to really drag around the midpoint of tx; you're clear, but tx just goes on and on, with whatever sx.  You'll pull through, and we'll see you at the finish line.

Cuteus, lovely to meet up finally.  For everyone, Cuteus looks like she's way beyond this business; and like for me, she said it is like a fading bad dream...  but both of us have been changed by it.

I do look forward to continued news from everybody, and I expect GOOD news, you hear?  Right, Whoaisme?
Maj Neni

[whoaisme]

Hi We are having problems with our computer, we haven't been able to get online, but just to let you know, NO news yet, argh! Giddy is starting to get really anxious, and I am attacking the m&m's! not good! We will let you all know..thanks for thinking of us.!

[MajNeni]

Giddy and Whoaisme,
I think I broke all records in waiting for PCR results.  I live in a small city, and had to go to a hospital lab for PCR draws.  The 12-week draw result during tx took 24 days to reach me (including 15 days waiting in a bin at the main lab of the hospital group, not forwarded to my doc); 28 days at 6 months (inexplicable).  
By the end of tx, I got smart, carried the lab orders to a Quest lab (~70 miles each way) myself, and wrote in "copy results to patient" under "special instructions"; they graciously asked for my address, etc.; got the results in about 11 days.  When the doc got the results and told me, I wore the same poker face... it was good news, so I let him have the pleasure of telling me.  Did the same at 3 and 6 months post; unfortunately I got an $85 parking ticket the last time because a stupid parking meter ran fast (ran down 60 minutes in about 45 minutes).  At 12 months post, my GI didn't order a test (he thought 18 months post would be better), so I asked a friend who's a doc to order a Heptimax; and the results went everywhere but to me... for about five weeks.  I sure hope I get to keep my slow results record, and you get your good news very soon.
Maj Neni

[cquest]

The gastro ordered the Fibrosure test, went to get the blood drawn today, should know in a week. I also went to my pcp and he did a routing physical, ekg was fine. The upper endo was 'mild reflux' so that is ok. The gastro says it is up to me whether or not to go back on the meds now...here is my dilema so I need some advice: My boss has given me a hefty raise, partly because I will be taking on more responsibilities (trickle down effect, she is taking on more, therefore I get more of her job to do). I need to be 110% now, I can't afford to be half with it, half out of it or forgetting things or whatever...I need to be right on the money so I don't make her look foolish or let her down. My plan is to see what the test shows, if it is bad news, I guess I have no choice, I have to go back on the meds at whatever cost...if the test is not so bad, I am seriously thinking of holding off a while...what do you all think?  
Cin

[cuteus]

when will you know the results?  I hear the Fibrosure is not effective in detecting the middle ground damage only the extreme, so I hope is a good diagnostic tool for you.
IF not too bad, I would wait, but I would rather it was a biopsy to make sure the other test was accurate.