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Hep C Discussion Forum -> On Treatment -> fading
Post Info TOPIC: fading
Kellyw


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RE: fading
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I told my work right off as I am in healthcare and I wanted to be sure I was doing all the "safe" stuff. They are pretty great. I was really cranky one day and came flying out of my room (ultrasound)all upset about a scheduling error. Next day I appologize and promised to stay in my room and be quiet. They we're great. I don't know if I have gotten better or I stopped noticing myself but I am glad they know as they totally "get" my rants and whines and even my wardrobe ---wearing only grey for some reason and the exact same thing everyday (then scrubs at work) I don't seem to really care about the whole "presentable" thing. Wore make up for a while to cover the dark circles, soon gave that up. Bought enormous scrubs so I would be as comfortable as possible, I do love them. Have been cutting my own hair. No one mentions it. Sometimes I'm so cranky I can't stand myself.

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Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
Shep


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Wilsondog--I am at the spa--aaah! Am feeling so much better now.

I am really lucky about the work thing--the folks I work with are another part of my "family" --we are pretty dsyfunctional but very supportive. It was easy to tell them and I am glad I did. There are days when I am not the sweetest person to be around--they cut me a lot of slack and when I go in my office & shut the door--they let me alone. It makes the day-to-day easier. Now if I could just get my dogs to realize that I am not here to serve and support only them. Oh yea--I really am

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
wilsondog


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I wasn't gonna tell work about this at all but the past few weeks have gotten so bad I had to say something.  trying to keep it simple and somewhat vague, but it feels better to know i don't have to pretend to feel fine when I feel like hell.  

Those thoughts to use still happen for me too.  I let them come in, swirl around, and once tey've mingled with the reality of how much my life would change for the worse, I let them go.  It also is vital that i talk to someone who gets it.  You can do that here and even better, maybe there's someone nearby going through treatment or in recovery?  Wish you some peace:)



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wilsondog
wilsondog


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Shep, You crack me up completely!  I so relate to the mind fog and am grateful the darkest moments pass with or without tears...

Kiwi baby, you should be taken to a spa and pampered from head to toe.  If I were a rich girl I'd send you that gift.  Actually i'd do it for all the girls in here...we could all meet at a place in the south western u.s... well, that maybe too dry.  How 'bout the Pacific Northwest?  Okay, everyone close your eyes and start pretending...could someone pass the seltzer?

I had my own drama today with my PCP because I am sick with a horrible cough and yesterday when she offered me cough syrup with codiene, I declined like a good little sober girl.  Well, after a full night of coughing I called to get that script filled.  Thay call back and say my PCP says use tea with honey because you are in recovery.  WHAT ARE YOU MY SPONSOR?  I was irate like any normal alcoholic/addict would be, and told her to call me back!!!!  She did and I got my script and will use it responsibly under the watchful eye of my actual sponsor, but man---tell an 11 year sober gal what to do when she's on triple threrapy with a cough and she may just go on a 3 state killing spree!!!!

I am joking, of course... about the killing spree part.

I am experiencing a weirdness today that I am very much enjoying... The weather in New England is unseasonably warm and yesterday I felt so down and sickly I wanted winter back so I could continue to hide.  Today I still feel shi**y, but I have this underlying energy charged with crazy humor that is so much fun! I don't have any energy for physical movement, but my mind is alert and charged with Spring! Kind of nice to know the real me is actually under all these viral layers and medication!



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wilsondog
Isiscat2011


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Damn!  Those bashtards!!   Well, at least you have the strength to get mad and that can't be all bad.  biggrin

Keep hanging in there, kiwi.  You are doing great.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
kiwi


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hey wilsondog.. haha, i go by purpledog sometimes coz my girl is a blue heeler, and her name is purple...  yeh, i hear ya. dont pee us off at this stage, you risk your life. yeh im in recovery also. and last week it was sooooo tempting to go get something that would take it all away, at least temporarily. ive done it in the past. dabbled. but i know the risks...   thanks for givin me a laugh anyway. im at work, waiting on my boss coming up to see me.. i hope its not anything serious, i got in trouble the other week for not really bothering to send my database in on time. i didnt really care. i think they feel like they are neglecting me up here. (i am remote from head office) and work with youth. so i guess if theres any problems, it could stem back to them not givin a ratsass either... but shes running late, and i wish i could just go home and sleep. havent told work. but i will if i have to... if things get heavy, im gonna just let the cat outa the bag... but i dont want to... anyway, tgif, only a few hours and i can go back to my couch. ive lived on there all week. havent even made it to the bedroom... me, cat, dog, gets a bit squashed up there on my couch lol.... 

well. cheers you fullas... so nice to know i aint alone in this craziness.... oh yeh, and one of my 'mates' last night said, you aint the only one goin thru this, we are too. we see your moods. i wanted to swipe her. wtf.... what have they changed to accomodate for me... nothing. they drink all the time and argue, and me being grumpy wont change that. grrrrrrr....

ok. blah blah blah. see ya

haha but the killing spree part is funny. brain fogged person forgot who was next in the queue. got distracted. bahahaha



-- Edited by kiwi on Thursday 22nd of March 2012 09:26:00 PM

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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
kiwi


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i drove and hour to my hepc appt yesterday, even RANG FIRST. coz i was tired.... and guess what....

the damn nurse lady person was OFF SICK.... i was not or am not a happy camper about that.... a bloody hour travel, each way and they couldnt send me a damn text to let me know.... i left the building in a tizz...

thats my great healthcare... jeez.... i feel so safe in their hands... NOT...

thank god i got u fullas.... :)



-- Edited by kiwi on Thursday 22nd of March 2012 07:44:19 PM

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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
Anna Christie


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Oh Kiwi, hang on hang on. I wish you were closer to being done. 28 weeks has killed me. I can't imaging 48. You wil make it. Just hang on and keep sharing. Much love.



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Shep


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I love this place and I love the new definition of "active"--man I feel like a power house. Not bragging--but after my Procrit shot --I fixed dinner for my bachleor neighbor and we sat & talked & laughed until my last dose alarm went off at 10:30 last night. I felt almost like a normal person. Then the morning arrived & brain fog is extremely thick. It takes me 3 trips to accomplish anything--put food in both of the dogs bowls--they both want to eat--stumbled to the other neighbors this morning to feed their animals while they are away & couldn't find the dog food--well I had bumped my toe on it on the way in.
I really just want my brain to come back--I feel fortunate that those dark moments are only moments--usually some tears will clear it out & I can move on
Everybody have a round of water on me
Shep

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
news


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Any port in a storm, my friend. Being called active is not so bad. Particularly coming out of one of those two-day spells where you can barely make it to the bathroom.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Phil G


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My wife asked me how I was doing this morning and if I slept well. Feel good, slept well. She was just wondering, because I seemed active last night. Really? What did I do? She said I didn't take a nap from 8-10 pm like I do every night. I left for work this morning with a sense of pride that I had been active.

Active has been redefined!!!



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Cinnamon Girl


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Oh kiwi, I feel for you, I remember those dark days, but please don`t fade away...you`re like a ray of sunshine around the forum, always cheering people up!  sun.gif

And don`t forget..you`ll always be remembered as the woman who brought `belly art` to the forum!  Wish I`d thought of that, it would have made shot night a lot more fun! aww

Take care ~ Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Kellyw


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Kiwi hang in there. I totally get where you are. Couple weeks ago I did what Phil did and actually have several weekends. Never left the house, never changed clothes, just sat and didvirtually nothing til I had to go back to work. I cried for 20 min? Over an ASPCA commercial . That kinda signaled me something was up . If I remember correctly way back you said you are on your own in this, like me. I do think it makes it easier for me to isolate myself and go to darker places when there is no one really close to drag me back to hope and positive attitude. Check in often here. I promise you that this will pass and you WILL have more energy and be back to feeling human again. I think even before you get to the end of the treatment. Chin up. Fighting spirit on your sleeve. Big hug!

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Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
Phil G


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This may sound stupid, but it seems those bad (yes, horrible) days are the only way my body and mind can force me to take a break, a real one, absolutely nothing going on. I spent the entire weekend on the couch, getting up only to get water, get rid of water, eat the minimum food, and take meds. That's it! And yesterday and today were really good days. Go figure.

Ah yes, those thoughts of that old behavior that got me here in the first place. Nothing is so bad that a drink or a drug won't make worse. But I'm a slow learner and quick forgetter. Thanks for the reminder!

Venting is a requirement. Unless I'm wearing my 'I'm having a really bad day' sign, no one knows unless I open my mouth. If no one knows, they won't be able to encourage me or kick my rear. And when you vent, I get to vent, too. Thanks!

I so look forward to checking in here daily to see what's going on, good or bad. And I always gets what I need, good or bad. Sometimes, that's all I got. See ya'll tomorrow.

 



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
JIme


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Yea, but your undetectable. UNDETECTABLE!!!!!!!!!

Hang in there, tomorrow will be better.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
news


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No fading allowed. Bad days, yes. Horrible days, yes. Good days, yes. But fading, no. Y'all are too strong for that. In week ten I had to lay in the bed for a couple of days in a row, and two more half-days to boot, all in one week. But the next week was better, and the one after that was my last week on Incivek. Things really improved after that.

Kiwi, I can't imagine having to go so long (since you guys don't do Incivek, yet), but you have come real far already. I just bet you and that old dog can pull through to the end. And Shep, I can't tell you how many times I fed on your happiness and used it to push just a little farther. I hope to pay you back soon.

Here's something that will make you grin. On Monday at my doctor's appointment, the nurse practitioner asked me if I would come to the next "class" they will have for new patients, to field questions from them about what triple treatment was actually like. My answer..... "In a heartbeat. Just say when". That should be fun. I will try to paint an accurate picture. I won't scare them away, but I won't blow smoke either. But I thought you might get a chuckle.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
kmiller


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Ok you two snap out of it. I can't do this crap with out both of you. To me you are Hero's. Now put those capes back on and get ready to fly.

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Shep


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Oh Kiwi--I hear you!! Some days I feel just the same--leave me alone, I do not want to swallow another pill, take another shot. And it is so lonely sometimes- feel like no one even knows I am here. But ---then I come here and find the people who really understand and know what I am feeling and I don't feel so alone any more! You hang in there and I will too. I know you have to put in more time but you can do this. What would those kids do without a healthy you? What would that old dog do?
You are on the other side of the world but I feel really close to you!
Sending you love and hugs!!
Shep

__________________

Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
kiwi


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this is a post just to vent.. took the day off work. got hold of all my kids by text. theyre not worried, its a stormy rainy day anyways. ive been so damned tired this week. ive come home from work and slept. woke up. had a tiny dinner, watched a bit of tv and gone back to sleep on the couch.

this aint living. i feel like if id dropped off the planet this morning, who would care. yeh feeling real sorry for myself right about now. havent taken my morning pills, its after 12. jeez. gota get my butt into gear, gota give my ol blind dog her heart pills,

shot 20 will be tomorrow night, so im not even half way and i feel like this has got me big time by the balls. for sure. its ironic ive been clean off drugs for quite a few years now, and im havin to hit myself up with stuff to make me well. but its makin me ill first.. no wonder one of the side effects is ''drug addicts may go back to that behaviour'' or something like that... i can see why on days like this.... blah....

ok. vent over. just needed to get that out.

 



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
kiwi


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  • awww thanks. yeh. it gets like that sometimes ay... cheers guys. it helpe for sure to know we often feel like this. and no one eles knows... yeh. but you fullas know. and thats ok... yup... prune juice, bring it...

and yeh. big breath in. yeh im not the only one who feels this way...



-- Edited by kiwi on Wednesday 21st of March 2012 04:59:46 AM

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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
krowdog


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Hi Kiwi.

I know how you feel.  Sometimes I get SOOOO tired of feeling crappy.  But, 'ya just put one foot in front of the other.

And yeah, it's ironic.  When I was young, I shot drugs.  Now I'm "jacking" interferon. 

And I used to drink booze.  So what's next, prune juice??

Dam.

Chin up, there  IS an end.

(Geno 1a, Incivek triple tx, Und since wk 4. Now in wk 22 of 24)



-- Edited by krowdog on Wednesday 21st of March 2012 02:42:03 AM

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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
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