Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: byebyeC on September 13, 2015, 05:57:48 pm
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Scared, anxious, excited, hopeful, suddenly obsessed with all things Hep C treatment related... 1/12th down 11 more to go. Cheers to all walking into this undiscovered country!
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Anyone else just getting started?...
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We have people at all stages of the journey here!
Sapphire is done and dusted! 12 weeks of treatment down and she has achieved SVR12 - the holy grail. So have a few others - look in the post treatment section.
drummerman is on the journey and from memory almost finished. Cal is somewhere around 1/3 way through 12 weeks. Msnomore C has finished 12 weeks and I have finished 24. We completed them on the same day! A weeks ago!
I know I've left others out, sorry, but I'm at work typing this in my lunchtime.
I have a thread about my treatment in this forum - it's towards the bottom. Many people have threads where they talk about their treatment. I've started a thread in the post treatment section.
I also blog regularly, and blogged my entire treament, from go to whoa and in fact am still going. Now I'm talking about the post-treatment landscape.
This is a very long winded way of saying welcome! :)
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Welcome byebyeC,
You will do fine.
Sides are not bad and I continued to work.
I have 3 weeks to go.
Drink lots of water.
And be sure to take your meds with food. Take your night riba early enough that it does not keep you awake.
I take my night riba at 8PM but some take it as early as 6.
I then take my final pm vike pill at 10 ,and go to to bed.
I tried and tried to find out if there was some kind of synergy effect between the riba and the vike , and perhaps they need to be taken exactly at the same time, but apparently they work independent of each other. I also asked the pharmacist at abbvie and she didnt see a problem. Anyway, this is only relevant if the riba is keeping you awake at night. If so call, your pharmacist , doc, abbvie tech and get opinions.... don't be surprised if they all tell you something different...lol.
good luck!
dm
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Thank you Philadelphia for the info. I'll def be checking out your blog! I'm literally reading everything here, teehee :D
And, thank you Drummerman :) It's just so so good to feel like I'm not alone. I'm happy to not be having any sleep issues, yay! I am getting some pretty monstrous headaches. Don't have a history of them in the past. I'm talking y'alls advice and drinking a lot of water (well, to be honest, tea with lemon) a pitcher a day plus a couple of 8 oz glasses of milk and a couple of diet sodas (I know, I know...)...Hoping they'll just wane themselves away bit by bit like I've been reading from others. It gives me hope and girds up my perseverence muscles :D
May we all get that glorious SVR!
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I am right behind you, this is my 4th day on Sol + Riba. We should finish about the same time. :D
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Welcome Byebyec,
Take the others advice on drinking lots of water. It will stop the headaches. Have a bottle with you always.
There's some side effects but everyone is different. I'm day 26 nearly 4 weeks which is 1/3 way through my 12 weeks.
If you can put your info in your profile signature that appears at the bottom of each post it's helpful for everyone, and you to keep track of where you were and are with treatment.
You'll be ok. Easier than old tx of interferon! Have you txed before?
Good luck. Keep posting.
Cal :)
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Cool Loveispatient! I look forward to us going through this, via internet, together ;)
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Cal, I'll be watching for your updates. It's really good to see your and others experiences. I am definitely getting the idea that everyone is having different reactions to these meds.
Maybe that's informed by their state of health starting down this road, by their particular sensitivity, genetics, diet, just how plain tough and disciplined a person may or may not be and the biggie, whether they've had to face a much harsher, more difficult by logs, tx. I've got plusses and minuses like most from this list...
I am, however, to my core, very grateful to those that have created these meds. I considered the interferon riba combo about 8 years back. But had good enough numbers to wait back then. Not so much anymore. I do know I owe a debt of gratitude to all who walked through those treatments as they've led to the new ones.
It's a weird thing, the stigma... I haven't thought about it for a long time. I'm an open book to all in my daily life. Now, I'm finding myself being really really cautious... I have been having on and off very unpleasant interactions with my GE's nurse. Don't want to put everything off on "the C". Especially since she's professional and then inexplicably rude and short. Hoping she's just going through her own stuff...
Ah well, shoving that into the "that's weird" corner. Enough on the plate.
On the plus side of sides :D I've had hepC induced peripheral neuropathy that's had me sleeping with ice strapped to my feet for the past couple of years. These drugs have kicked that to the curb!!! In just one week of tx! Woo hoo!!!
Great numbers Cal! Congratulations!
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Thank you Philadelphia for the info. I'll def be checking out your blog! I'm literally reading everything here, teehee :D
And, thank you Drummerman :) It's just so so good to feel like I'm not alone. I'm happy to not be having any sleep issues, yay! I am getting some pretty monstrous headaches. Don't have a history of them in the past. I'm talking y'alls advice and drinking a lot of water (well, to be honest, tea with lemon) a pitcher a day plus a couple of 8 oz glasses of milk and a couple of diet sodas (I know, I know...)...Hoping they'll just wane themselves away bit by bit like I've been reading from others. It gives me hope and girds up my perseverence muscles :D
May we all get that glorious SVR!
I had headaches for week 1 and 2, then they went away... fortunately they were mild. But always present.... then one day..gone!
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Very encouraging Drummerman! Thank you :D
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Very encouraging Drummerman! Thank you :D
Your welcome!
dm
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Hi Byebyec,
You're in Alaska! OMG! I'm in Australia. Alaska seems so remote and cold and far away to me! Sorry to all the Americans if I sound like a twat.
I don't think you can predict how tx effects different people in differing ways. Lots have txed before here, lots are in differing stages of the virus, maybe previous fitness, genetic predisposition and make up, who knows what is a predictor?
Some get some side effects, some get none.
I was interested to read about the peripheral neuropathy. I have small vein neuropathy but I take A.L.A. and Lyrica (I think its called pegbalin or something like that) I have numbness which started in my feet but is now all over, shifting it's focus. I hadn't noticed if it was better or worse because of the medication I'm on. Would love to come of Lyrica horrible drug. It's HCV related according to American and U.K. publications, like so many of my comorbidities. Australians Doctors are not that up to date on the comorbidities. I attempt to educate them about the new research (hohum) and I am looking forward to some of the comobidities disappearing or at least stopping from progressing. SO great to hear about your neuropathy!
Do drink water with the headaches, the ribas dry you out and I became dehydrated in the first week, so water is vital!!!!!! It will help the headache and as Drummerman said before, they will dissipate as well.
Here's to a sides free tx! Cal 8)
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Hi Cal,
Yep, in Alaska. Love it in the Summer. Y'all in Oz might not think of it this way, but we Alaskans know you Aussies are our literal polar opposites. So, every time our amazing and beautiful Summer ends, we know your amazing and beautiful Spring is beginning. I always think of Oz (with great jealousy) :) at this time of year. Alas, we've had a most glorious Summer! Enjoy the shifting of the Earths axis placing the Sun on your side of the globe :D
Each country seems to have it's healthcare ups and downs for sure. I am very lucky to have private insurance through my husbands work. I've been reading terrible stories here from U.S. patients with the VA or medicaid being denied and put through enormous hoops to get tx. Just awful. And for you Aussies, praying these meds get on your country's approved list asap.
About the neuropathy, it's a very odd combo of pain and numbness. I didn't even notice it in my hands, arms and legs because I still have some sensation in all. It wasn't until my gp tested me for numbness because of a disk eruption in my spine that I realized I was going numb. Then I blamed it on the spine. Then my calves started to ache and finally the burning feet (been checked for diabetes, negative). Now, when I have blood drawn I literally feel nothing. Good coming with the bad there. In the back of my mind though, was the research I'd done on the dreaded C. And, it mentioned this as a symptom. It was the Viekira and Riba that proved it was C related. I'm still mostly numb in those places. And, my feet still tingle and mildly sting at times. Nothing even close to the screaming burn before the tx. I too am on Lyrica and agree with your assessment of it. It's put 30 lbs on me :( Just not having to fill the ice bag every night is another reminder these little pains in the keester are going DOWN! Perhaps you'll get this great side coming up. Cheers to hope!
Thank you for the advice, it makes sense to need more water than normal through tx. I'm on it now!
Finally, yep, longwinded lady...
I've had AMAZING news!!! I didn't know I needed to call the doc to start my meds. So, I started them on the 7th. When I told them, they said I needed to go get beginning of tx labs. So, three days in, I did. Just got the results. From 7 million to 1200 in 3 DAYS!!! Woooooo hooooooo!!! So excited! Totally helps deal with the sides! :D :D :D
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"and I was dancing with myse -elf, oh oh uh oh!"
https://www.youtube.com/watch?v=FG1NrQYXjLU
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Good one Byebyec!
https://www.youtube.com/watch?v=9G4jnaznUoQ
Dancing in the street!
That was a very quick fall. I fell from 9 mil to 54 in 2 weeks. The drugs are the bomb! Cal 8)
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Hi Byebyec,
Yes we are polar opposites of course! Yes we are just coming out of a cold winter, which most would consider mild, but I really feel the cold. I don't know if that is a HCV thing? We are going into Spring and its warming up nicely 30 degrees today. Which is pretty hot even for spring.
Yes I can't understand your health system but it sounds very frustrating. Leaving people to get sicker or die is just abhorrent in this day and age in a first world country. I am so glad that generics have become available to the third world. We need to wipe this virus out of the park! My neurologist wanted me to tx as well because of the neuropathy. I have had a couple of day last week when the nerves were hurting the outside of my skin to touch. But I put that down to the ribas messing with the nervous system. (right or wrong?) SO good you could rove it is related. I shall report this back to my hcv friends in Oz as well as the Hep Council here. I'll also try to remember to tell my Gastro.
Sorry to hear you're on Lyrica too. It works but its sooo addictive and will be hard to come off, but doable. Revolting drug. The Persistant Pain Clinic I attend is going to help me come off them post tx. I hope I am as lucky as you and it goes away. I fear mine might be damaged nerves by now though.
Super glad you're drinking more water. Try to drink decaffeinated coffee or tea, as it is not a diuretic and you won't dehydrate.
Wow you are lucky to be able to have a viral load test 3 days in. I've never heard of that before. We are only allowed 4 per year. I think my next is at 8 weeks? Not sure will ask that tomorrow at appointment.
Stay happy :) Cal
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Hey Cal,
No doubt, even with the attempts to "fix" things here in the U.S. of A, it's still a weepy hot mess... Shouldn't be.
I'm very VERY happy about the no ice on the feet! Still a lot of numbness. I do prefer numb though lol.
I'm getting rid of the Lyrica immediately post tx too. Very yucky stuff...
So caffeine is a diuretic huh?... Did not know that!
The 3 day viral load was my and my nurses' miscommunication. She didn't tell or send me the schedule for blood work. So, I just started taking my meds. I called her to report sxs and she informed me I needed beginning of tx blood work done. She had me go in after 3 days of tx for BOT numbers. So, I got lucky! It's really giving me a boost of happy through the tough stuff :D :D :D
I'm just about to get my Alaska shiver and liver quivers on! :D
Enjoy some Oz Spring for me! And blessings on your next vl <3
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Thank you Philadelphia for the info. I'll def be checking out your blog! I'm literally reading everything here, teehee :D
And, thank you Drummerman :) It's just so so good to feel like I'm not alone. I'm happy to not be having any sleep issues, yay! I am getting some pretty monstrous headaches. Don't have a history of them in the past. I'm talking y'alls advice and drinking a lot of water (well, to be honest, tea with lemon) a pitcher a day plus a couple of 8 oz glasses of milk and a couple of diet sodas (I know, I know...)...Hoping they'll just wane themselves away bit by bit like I've been reading from others. It gives me hope and girds up my perseverence muscles :D
BBC - cut out the diet drinks, esp. if they have caffeine....they are not going to help your headaches .... at all.
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Lol Drummerman! I just knew I was gonna get it for the diet drinks! Yikers! I've only had one today... (blushes shamefacedly)... I shall try 8)
Thank you for caring enough to say something.
bye :)
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Lol Drummerman! I just knew I was gonna get it for the diet drinks! Yikers! I've only had one today... (blushes shamefacedly)... I shall try 8)
Thank you for caring enough to say something.
bye :)
I was so addicted to diet coke....I absolutely love it.... but gave it up for tx, and caffeine in general, cause the 1st 4 weeks I felt like I was going to jump out of my skin, heart pounding.... caffeine made it worse.
dm
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Hey Byebyec,
Diet drinks? Consider your bum smacked :P Hehe. I get the same as Drummerman, I am shaky and edgy as hell, so I gave up tea. I'm originally English and tea is my one and only addiction. Hohum it's for a higher cause. Cal 8)
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Lol Cal! True story DM and Cal on those sodas... I did, however, read a paper on coffee and caffeine having a protective effect in folks like us with liver disease. (me rationalizing? ;) )
http://www.medscape.com/viewarticle/827617
Course that's for the pre-treatment period. Not whilst on... waa waa waaamp (for me)! :D
I love me a good cuppa too though. Guess it's all green tea till EOT 8)
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Even though it's tough try drinking water. Just water. Or water with a smudge of lemon. I swear it'll help your headaches. Your liver is processing all sorts of extra drugs, water will help deal with the workload.
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ByebyeC,
You really are a card! ;D You can have decaf coffee. But make sure you just have that bottle of water with you at all times. (I feel like a bossy parent scolding you!) ::) How are the headaches? Cal
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Hi Philly!
I'll try the lemon thing. That sounds a bit more palatable to my "Mehr-can" tastes teehee :D I did great yesterday, two pitchers of just plain green tea. Not so great on that front today... Doc visit, errands, RX pickups, giant FAIL for moi. Yesterday, as per your advice, was a barely headache day. I think we all know how today went... I'm going to have to develop some new habits!
Hey Hey Hey Cal,
Must take a card to know a card Cal?... And, I KNOW RIGHT??? A bum smacking and a firm scolding all in one day! Guess I should be glad we're on opposite sides of the globe , haha!
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I am right behind you, this is my 4th day on Sol + Riba. We should finish about the same time. :D
How're you doing Loveispatient? All's well on the homefront?...
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Byebyec C,
You get a pat on the back today for drinking water and no headaches, you card!!!! Cal 8)
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Haha Cal! I'm wearing my big girl knickers today! So proud... :P
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I'll have you potty trained next! Hehe ;D cal
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Bwahaaahaa! Cal!!! ;D
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Byebye,
Honest to goodness you crack me up my friend. SO good to have a joke in amongst all this stress and sxs. Cal 8) 8) 8) 8) 8) 8)
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That's a fact Cali girl!!! 8) 8) 8) 8) 8) 8) 8)
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2nd week of VP + Riba throttled and annihilated!
Week two was a bit of a bother... ;)
3 in to week 3! Yussss! Alt is back to normal, what's a little light yellow in the eyeballs? Nada! :D
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Byebyec,
That a girl! It isn't pleasant but it's certainly doable. If we didn't have to take the rotten ribas we'd be ok. Are you having 2 week bloods? Cal :)
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I did my entire 24 week treatment with elevated bilirubin. Normal lab values here are 3-18. I hit 152 within two weeks, and we reduced my riba dosage. Even so it never fell below 50 which is over double what it should be. Two weeks after treatment and it's down to 19.
I would try to discuss whether you need any additional tests with your doct or, but I think perhaps you've hit the Yellow Jackpot.
When mine was high they ran a test to see if it was conjugated or unconjugated bilirubin. They also ran fibrinogen and haptoglobin. And did an abdo u/s.
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Phily,
You have a very thorough Doctor. Mine is like that too. I just got a high bilirubin test for the first time. I'm not stressing, see what next weeks is like? Cal
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I've got Greg Dore, Cal. I can't say enough nice things about him.
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Hey Gals,
How's the bp Cal? Any improvement?...
Did 2 week labs on on the 21st. Don't have that back yet. They aren't ordering any specialized tests like you mentioned Philly. They are going to to LFT's/Metabolic Panel again next week because last weeks had 9 values out of normal range. A phos, ast, alt, glucose, total bili, carbon dioxide BUN/urea nitrogen, hematocrit, rdw. Don't know what all of those mean. Nurse called to correct herself saying I was back in normal range. I'm not. But, I am back to my 3 days in numbers, so some improvement :)
We'll see what next week brings.
These good and bad days are a roller coaster. Felt pretty great yesterday. Back to a "big kill" day today I'm guessing :)
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Oh Phily,
Greg adore is an icon in the Hep world as you would know. You are in capable hands. I have Paul Clark, he inherited the practice from my previous Doctor of 23 years Prof Cooksley. I like Paul a lot he was at the hospital in an hour when I was admitted. He says caring things too which go a long way. He is a researcher as well. Nice dude. Cal :D
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Hi Byebyec,
It gives you a fright when you see your bloods. My LFTS are fine, everything else says I should be dead! Dont let it get to you. They bounce around all over. Your V/l says it all. You're doing good kiddo. Cal 8) ps BP ok today, go figure?
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So happy to hear your bp has bounced back. At least for today :) Yay Cal, yay!!!
Yet another thing we have in common :) Our labs say we should be dead, baahaaa :D
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Thanks Byebyec,
Yes off to Doc today for flu type thing, sore throat etc. get some anti biotics. I have a friend here on viekira who was on them for 5 weeks! We've had the worse year for flu ever this year. Maybe he'll break it to me that I am dead but I won't lie down. Hehe Cal :)
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Hey Cal! :)
Hope the doc visit gives you some relief! You sure deserve it (((HUG)))!
Amen. No layin' down. Period.
<3 Marianne
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Byebye,
Lying down? As much as my body is pleading me too, the ribas are telling me to "DO chores Cal, don't take any notice of that whingeing body, what would it know? Faster, faster I tell you!!!" hehe Cal ;D
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BBC, OMG. IT CAN'T BE. THE FORUMS ARE BEING TAKEN OVER BY ZOMBIES. Oh yea, I forgot . Most of us are anyway!!!! LMFAO!!!
CAL, I THINK I CAN, I THINK I CAN!!!! I KNOW I CAN , I KNOW I CAN!!!!!!!
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Lmao Tommy,
Yep were taking over. I am going to stay in bed and boss everyone around from here. I'm upstairs so I phone it text. Usually the texts just say TEA! Cal 8)
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Tommy... D O N ' T L A Y D O W N!!! Don't do it!!! :D
Cal,
That is what minions are for! 8)
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Last time I layed down, nobody told Me it was a bus route!!!! AWWWWW Momma , I want some minions!!!!!
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Yet again, LOL TOMMY! :D
Ya' gotta get some minions! They're the BEST Jerry! THE BEST! (Seinfeld ref :)
I really hope it wan't me and my imaginary twin Percival that got you countin' your pills...
Umm, Perci says to say he hopes it WAS...
;)
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Good One Perci, You better watch that Marianne woman. Next thing You know she'll have You thinking You are the crazy one!! Tee Hee!!! BTW , did You get the plate # of that Bus Yesterday?????
How is the weather up in Your neck of the woods? Down here on the third coast it's cool , cloudy , with a nice soothing drizzle falling. Very peaceful I must say.
Hope You are doing O.K.! Oh yea, tell that Marianne chick I said HI!!!!!
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What bus? (says the one in charge :) )
Sounds like we're having the same weather today... Prolly cooler though, 45 deg. Fairbanks is about 130 miles N of here. They had 7" of snow today! Eeks! W a y t o o e a r l y! I too love the sound of the drizzle. Soothes the ragged riba nerves...
Getting the oft described shortness of breath, riba cough (yes, I DO blame it for EVERYTHING!), and on and off flu-like symptoms. But, it could be much much worse. All in all feeling very blessed and happy to be able to count my insanely expensive meds and believe that SVR is around the corner!
Glad you're about to get off this particular merry-go-round soon and joining the others on the next one! Woot woot!!! See you there in 9 weeks!
Love love love to laugh with y'all!!!
Marianne
Sank you berry big for asking! :D
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Yea , a little bit. 73 degrees but it's all good!
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Tommy, really? 73 is cool?... :o
Lol! We Alaskan's (said in tough burly man voice) still go out with regular clothes and sandals when it's 45. "...and a banjo on my knee" teehee :D
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Yea , when it's usually 95 to 105 that's cool! The humidity is killer at those temps.
The wife is cold & I am in shorts a tee shirt & barefoot. A brisk walk & I break out in a sweat. But , it is good for the skin as opposed to the dry heat out west.
We play git tars an fiddles down here in Texas little Lady!!!! A Ha Ha in the voice of John Wayne!
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Ah would shrivel up and dah *doing my best Southern belle" at 95!!!
Guess the humidity factor is what's different here. Ocean, giant rivers, lakes all around, no desert... I do love it here!
I just know y'all think we Alaskan's are missing some teeth, brain cells (ok, the brain cells thing is true, for me :p ), and date our cousins... Thank you Discovery Channel, "History" Channel and The "Learning" Channel! Heehee :D
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Well bless Yore lil ole heart darlin. ( read don't mind her she cain't help it she is touched ) When Your at or below sea level the hiway over passes look like mountains here in Texas. Trust Me when I say We have a bunch down here in Texas that You refer to as toothless morons and Yes they do date their cousins. The only ones that make it to Discovery Channel seem to be hunting pigs or alligators as the primary source of protein and income!!!!!! I shit You not , You are My favorite turd!!!!! To much??? There is that poopy humor again. I would make a couple of jokes on the subject , but even I have a limit to what is socially acceptable!!!!
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I c'aint Tommy! I c'aint! :p
Never too much! Ya gotta' laugh! :D
Quote from one of my favorite movies:
"You know how those yankee's love making us all out to be a bunch of swamp-water, alligator-wrestling bigots."
Nothing beats a caricature... huh?...
Ah well, we can take it! AND laugh all the way :D
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Damn!
I go to sleep and miss out on all the fun. I watched a b grade movie because it was set in Alaska last week. Of course it was about a couple lost in the wilderness. Byebye can't live in a wooden hut and live in the wilderness surely?
Tommy we think of Texas as you say, kill em skin it, eat it types who marry their cousins, actually that may be the deep South whatever that means?
I love the way you say Y'all. It makes me smile everytime. Just like in the movies :) Cal
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Marianne,
Sounds like your and Percy are toughing out the sides. If the flu tye stuff turns into an infection like mine did, get anti biotics quick, remember you're on an immunosuppressant..Riba. Lovely lovely ribavirin, yummy yummy. Cal 8)
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Hey Cal :)
Of course I live in the wilderness in a hut! It's just down the road from Fred Meyer, Old Navy and Costco ;) ... Naturally, this wilderness has, actually truly, been shown on reality tv in the states in a show call Alaska State Troopers, bwahaahaa :D Go ahead Tommy, Go ahead!...
:o
Marianne
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Byebye,
The scenery was beautiful and they got rescued and didn't lose any toes to frost bite, so they all lived happily ever after, next to Costco. :-* Cal
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Lol Cal!
Those are the good stories! Such good prices at Costco ;D
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3rd week of VP+Riba :o Buried in the backyard :P
Just loaded up week 4's pill box! 1/4 down, yusssss!
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Cal, Cain't get much deeper South with out getting into Mexico! Kill 'em & grill 'em country for sure! LOL.
BBC, True story. Houston edition of Cops, redneck couple fighting ( Domestic dispute they call it----better known as a little tiff ) He's dressed in flip flops , cut off raggedy blue jean short and a wife beater with chrome wrist accesories courtesy of Houstons' boys in blue, She's hanging out the front door hollerin' , LOCK HIS ASS UP, LOCK HIS ASS UP!!!!!!!! Refuses to press charges & goes down later to bail him out!
Ya'll cain't make this stuff up , I ain't foolin'!!!!! Not one teeny tiny bit! A carica what??? That's My dang ole High school picher, That there ain't funny not one bit!!!
NOT EVEN GOING TO TRY SPELL CHECK ON THIS POST! CHUCKLE CHUCKLE.
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We have those here in Oz too. So sad. Cal
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Marianne, week 4 well done. Celebrations in order, virtual Australian BBQ and beer. Cal :)
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Haha Tommy!
We love to kill 'em and grill 'em here too! It's just Bullwinkle we're grillin' though :D So, SO GOOD!!! But, I digress... always. :p
You are a couple of crack ups my forum friends!!! :D
Cal,
I'm IN for the virtual BBQ and beer! Bwahaa :D You'd have a full on CROWD if we had some Star Trek transporter beams!... I really want me one of them! (see what ya did to my grammurr Tommy :D ) I'll bring bullwinkle Tommy'll bring (? deer?, raccoon?, armadillo?)... :)
<3
Marianne
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Hey Ya'll forgettin' tha Hawgs an tha Gators. Powerful good them are.
P.S. I have plenty of virtual money , so I'll spring for ALL THE VIRTUAL BEER!!!
Sometimed I crack Myself up , right Perci? Perci? Where are You? O.K. Marianne, what did You do with Perci this time???????
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Virtual beer is the best we can hope for! :D I just love the virtual money too! :D
Miss crybaby anxiety attack, aka Marianne, is shoving Perci down today... SO NOT ME! :'( :'( :'( I no yikey!
You totally crack Perci up Tommy! He's shouting let ME OUT Miss "B" ! :D
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Marianne.
Let him out. He's invited to the virtual party. Just don't let him bring anymore of his friends I've seen the types he hangs around....kidding! Have some of my virtual magic BBQ beans, they're anti anxiety, they work a treat on riba anxiety. Breath through it darlin' it's just the drugs. It passes. DO meditation if you need to.
Now you need some of Tommys virtual beer to wash that down. Cal 8)
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Tommy,
Never had a gator burger. How about killin' skinnin' and eatin' some of that at the BBQ?
Thanks for the beer BTW. Cal :)
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Lol Cal,
Perci does have some "friends in low places, where the (virtual)whisky flows and the (virtual ;) )beer chases the blues away"... ;)
Marianne :o :o
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Think about what you need to do to get through this. Don't think about what you should be doing, think about what you need to do right now. Is it curling up on the lounge with a mindless funny tv show? Is it going for a walk? Is it taking your camera out for a spin and snapping some lovely pics of things you see? Is it reading? Sleeping? Exercising?
Do it. Just go with whatever you think you need to do to feel better again. Unless it's counter-productive to treatment, like drinking a jug of mojitos. Don't do that.
We generally know what might make us feel better, but for a million reasons we don't do it.
Go do it.
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Marianne,
I spoke to another kind forumer about this issue because I had it with a vengeance and so did they. It comes and goes and you have to cope with it! deep breathing and remember endured until cured. You can do this. If I can and I'm a scaredy cat, then up you can. Cal :'(. Ill pm you
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Thank you Cal and Philly,
I'm hanging on... I'll try your advice. Pretty weird feeling so out of sorts.
I appreciate y'all very much.
And, lol Philly, no gallon of mojitos, unless they're virtual like the bbq, beer and money. No worries there.
Marianne
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BBC, I GOT IT!!!!! Virtual Tequila shots with real salt & lime for realistic effects!!!!!!
Sure to cure what ails You!!!! Virtually anyway , Right? Also , thinking about whuppin up some World Famous Armadillo sausage with Jalapenos and cheese , BBQ 'coon , and a batch of 'possum & ringtail cat stew with some porky pine added for flavor!!!! MMMM MMMM GOOD!!! Tell Perci he can have all he wants as long as he is staying at Your place!!!!!!!!!
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Tommy,
Sounds virtually yummy, real time vomitorium! Haven't done tequila shits since I was a kid. I see my sons do shits now and cringe. But we must have loved them once? How much can a koala bear? I'll bring, goanna pate, anteater nibbles, platypus sandwiches and red back spider biscuits. Now were partying :)cal
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Oh dear dear duh duh duh duh dear!... as Piglet from Winnie the Pooh always said... :D
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Hey Cal, you might want to check auto-correct on that last post of yours... lol
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Ooops, embrassed face. :-[it was the typists. oops. sorry. Cal :-[
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I thought it was hilarious. :)
I've done the same. O and I are very close together.
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So did I :D roflol
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I can count on the Aussie and the Alaskan! hehe :) :) :) Cal
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The last time I was down in Mexico back in the day , I had that problem too. And I thought My poopy humor was bad!!!!! LOL LOL LOL!!!!!
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And the Texan....hehe Cal :)
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You HAD to know I would catch it!!!
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I had a fiver on it! Cal :)
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Ya'll coulda knocked Me over with a fetha whilst I was areadin that one I do declare. Darlin' Ya'll just made My lil ole day dontcha see.
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Tommy,
You are a naughty man. But you know that! Cal 8)
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You ok chick? Salxx
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Rough couple of riba cries/riba rages days...
Not a good time to be challenged about the very support that's keeping me from losing it.. Really really need y'all. :'(
"I remember when, I remember when I lost my mind!"..https://www.youtube.com/watch?v=bd2B6SjMh_w
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Hang in ByeByeC. Do what you most need to do for yourself.
It's hard when loved ones don't experience us as our normal selves. My best input would be "restraint of tongue and pen". When I had riba on past treatment, I tried my best not to go off on my loved ones. I would frequently remove myself from their presence (i.e. hide in my bedroom) so I wouldn't react to things that normally wouldn't be a big deal.
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Marianne,
Good advice from Bree.ntry not to do anything rash or like the song says. Crazyyyy! :-X I nearly punched my sons door the other day, I was so scared and so was he. I explained RIBA rage. It's so scary being out of control.
I think that song could be e RIBA anthem :'(
No one ekes but a fellow warrior can UND
Rest and. Again I say we need to be with our tribe when we're at war.mslondont leave forum.
You can imagine symptoms by reading them, but you'll know the difference. What you've gone through is typical RIBA. Hold on. Cal :)
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Sorry about crap tying, hands shaking today like mad. Cal
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Week 4 stick a fork in it, it's done!!! Officially 1/3rd of the way done! Off to get my 4 week VL and labs this am! Can I get a oooooh oooooh! 8) 8) 8) 8) 8)
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Week 4 stick a fork in it, it's done!!! Officially 1/3rd of the way done! Off to get my 4 week VL and labs this am! Can I get a oooooh oooooh! 8) 8) 8) 8) 8)
Way to go Marianne! Wooooo hooooo! ;)
kim
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Way to go! Great milestone...Looking for a UND, it's so easy on the eyes! Hopefully I'll be getting my labs again today too!
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One month down, great work. :). Looking fwd to seeing test results - I'm interested in yr alt and bili.
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Marianne,
1/3rd already. That seemed to go fast...not! That's a big ooooooh ooooh from me girl!
Can't wait to see your results. God on you. Cal :)
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That's good on you not God. Sorry oops. Typing with one finger and I still get it wrong. Cal :-[
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Thanks all for the cheers! ;D
Last week alt 36 (6-29) normal
Bili 2.4 (0.2-1.2) normal
Ast in normal range
Apholphotate 155 (33-130) normal... hmm
Doc said some signs of anemia....
I truly appreciate y'alls advice. It's been able to bring down the tenor to acceptable. Really watching my tongue...
Perci ;) and I really hope this is a phase that passes so he can be the only crazy/silly thing commented about in my posts :)
Very excited to hear those 4 week numbers! You'll be the next to know! (After the hubby of course :)
<3 Marianne
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Marianne,
Looking good honeypie. Bili was not too high but we knew it would be higher. Those numbers are coming down! ALT cool bananas! Cal :)
For she's a jolly good woman,
For she's a jolly good woman
and so say all of us!!!!!
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My bili stayed well over double the normal amount all the way through treatment and dropped to 1 point over normal within ten days of treatment
Hang in there
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Can't wait for your update!!!
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A big thank you to my forum folks for always cheering me up and on!, oh and keeping the pot lid on so my brain doesn't boil over, teehee :D (((HUGS ALL AROUND)))
You're the best, truly. ;D ;D ;D
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Stewed Brains huh?? Yummy, I'll take a double serving, Hold the Riba and Hep C please!!!!
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Sure feels that way Tommy! :D
I WISH I could hold the riba! It's making me coo coo for coco puffs!!! I'm gonna go with it's hepc free though!!! :D
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With all that I have heard , read , and listened to You guys say about Ribavarin , I would have to respectfully decline if prescribed by My Doctor. I would most likely wind up in the psych, ward of a Texas Dept. of Criminal Justice Penitentiary very quickly for various & sundry reasons I do not care to discuss here. But with that being said, Have a wonderful day darlin' ( Pssst Perci , sic em )
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Thanks Tommy,
It's getting better:)
You go out and have a great one too! Hopefully one without too many honey do's on it this time :)
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Tommy,
That's why I don't leave the house too much, it's best to keep mouth zipped. I can't be responsible for having no filter on it anymore. I'm taking no prisoners at the moment and leaving a trail of riba mess. Can't wait to get off it. I feel like swearing but I'm restraining that too (not always :-[ successfully). hehe Cal :)
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I certainly feel for You guys. I guess laughing to keep from crying takes on a whole new meaning!!!!
I LOST CONTROL!!! REWARD TO ANYONE WHO CAN FIND IT!
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Tommy,
Damn right! Gotta keep laughing. He he Cal ;D
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Marianne,
How are you journeying my fellow and naughty traveller? How the RIBA crap? Cal :)
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You two crack me up! (more than I already am!!!) :D
I'd def be in the pen too if I did a tenth of what I wanted to the last couple... Thank Heaven for the ER and calm your little #% down pills.. Doing much better now.
If either of you locate that "control" I've lost, please, oh please, give it back :D
Marianne 8) 8) 8) 8) 8)
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Anyone remember that Saturday Night Live skit: "Simma Down Now"
My son used to say that to me all the time... lol
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Lol Bree!
I'm googling it as we speak! Oh! And the Chronic-what-cles-of-Narnia! :D
:o Riba-ers must laugh n o w!!!
https://screen.yahoo.com/nadeen-burger-castle-000000292.html
https://screen.yahoo.com/snl-digital-short-lazy-sunday-000000173.html
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Boy , Cheri Oteri used to have Me rolling with that skit. My Granny years ago when we were little was like that, All four & a half foot of her!!!
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I went and re-watched some of them on you tube....
SIMMA DOWN NOW! 8)
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UH-OH, brain is bubbling again!!!!! FREEBREE!!!!!
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Reminds me of Leonard Skinnard's Free Bird!!!
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Damn you tube wouldn't let me watch them! I hate missing out!!! Cal :)
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Cali,,
Betcha could google an Oz friendly version - just google simma down snl
SOOOOOOOOOOOOOOO FUNNY! ;D ;D ;D ;D ;D ;D
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One thing I won't "simma down!" about is that it's officially 5th week of VP + Riba cremated and will make next years' flowers grow! Bye bye week 5!!! Don't let the door kick you on the way out :D
On to week 5! Rwaaaooooorrrr!!!
<3 <3 <3
Marianne
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You're on to week 6, BBC!!! That means the finishing stretch to the 1/2 done mark. Woot! 8)
Just finished my first 4 weeks today. Yay! With my second bottle already here, I'm just kinda assuming I'm looking at my cure.
But I will soooooo do that third bottle just to be extra, super certain.
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Hey Else!
4 weeks is one of the BIGGIES to reach! Hopefully a vl drawn (?)...
Congratulations on pushing into the closer to halfway territory! So many milestones to celebrate!
For SURE finish that last bottle. Makes all the difference for many. You're gonna beat this thing!
keep up up on your results! :D
<3 Marianne
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4wk labs on Wednesday. How strange is it that I'm disinterested. To the point that I'd rather not go. But I will lest I risk some possible insurance non-compliance issue.
It's just that it is what it is. I know the Harvoni is working. I have approval for 12wks and that's going to cure me. I don't need the motivation of falling viral loads. I know. I'm weird.
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4wk labs on Wednesday. How strange is it that I'm disinterested. To the point that I'd rather not go. But I will lest I risk some possible insurance non-compliance issue.
It's just that it is what it is. I know the Harvoni is working. I have approval for 12wks and that's going to cure me. I don't need the motivation of falling viral loads. I know. I'm weird.
I totally get it. I have felt that way too. Sometimes I think we an get really focused on the milestones, still it will be nice for you to have confirmation. My doctor is not a rabid tester. Pre-treatment, 4 weeks in treatment, EOT, and then he wanted to do 24 weeks. I talked him into a 12 week post for my peace of mind (rather I asked, he said o.k.). Then again, if it's UND at 4 weeks not necessary for tons of tests unless blood work is off or insurance demands it.
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Big congratulations to Marianne and Else,
I am quite the opposite. I need my bloods to convince me it's working. I don't think I ever got over relapsing last time and it sits in the back of my mind all the time, about how confident I was etc. I almost daren't get to excited. I know that's very glass half empty of me. Sooky baby. Cal :'(
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Hi Else,
Something tells me you enjoy being "weird"... As do many here, just as I do... ;D
Thanks Cali girl <3
My doc keeps sending me in for them weekly cause my bill's staying up and aphos is rising... :P
But the big four week test for vl I got a strange "too low to quantify (?)... smh
Ce la vie said the old folks...
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My doc keeps sending me in for them weekly cause my bill's staying up and aphos is rising... :P
But the big four week test for vl I got a strange "too low to quantify (?)... smh
Ce la vie said the old folks...
Sounds like VL is headed in the right direction (not there or barely there)... I don't know about the bili and aphos stuff... you are doing it Marianne!!!
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Thank you Bless you Bree! <3 <3 <3
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Hi Marianne,
Too low to quantify, means it can't get under the limbo bar! It sooo low they cant count it in a quantative way. It's better than being given a number. Your 4 week V/L will definitely be UND Chickie! Cal :)
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Your viral load's so low it could shimmy under a snake and the snake wouldn't feel a thing. ;D
(yeah, you're right. I do like being weird. Oddly satisfying. Beats not liking it and being weird anyway. 8))
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You VL is so low it couldn't even get a dragon costume for Halloween! :o
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Nice one Weird Else and Bree.
Your V/L's lower than a snakes belly in a tyre track 8) Cal
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I start the Viekria tomorrow(Oct 17)Byebye.I wish you all the luck in the world.Please post and keep us up to date on how you're doing.It seems most here are on Harvoni so I'm interested in how people are doing on the Viekria.I'll be posting also as I go along.Good luck.
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Hi BillT and welcome! I did 24 weeks of VPak + ribavirin. Entirely do-able just focus on the goal. Riba was a bit tough, I had to reduce my dose, but I made it to the end. I'm 5 or so weeks past treatment end and feeling good!
There are a few Viekerians here doing treatment and they are all pretty active.
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Y'all are HILARIOUS! And had WAY too much FUUUUNNNN!!! without me (and Perci;),
Keep 'em coming! ;D ;D ;D ;D ;D
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Welcome Birt!
Cal and I are definitely with you. I'm just about at the end of week 6 of 12 and Cal is about 2 weeks ahead of me. Both of us are fellow Viekirans so we'll be here to hold you hand anytime :)
Marianne
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Marianne,
We missed you and Percy. Though I think he snuck on a few times when you weren't looking...... Cal :-X
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I've just spent the past half hour tying to figure if I'm moving on to week 5 or 6... Oh I do dearly miss my brain! My husband's enjoying the, albeit temporary, absence of miss smarty pants :D
Sooooo, if my super powerful and intelligent mind is working at all... (big if!!!) It's week 6 "gone with a D!!!" 8) 8) 8) 8) 8)
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Which way did he go George? Which way did he go?
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Marianne,
I think you just did week 6 coz I'm into week 9. My brain goes awol, always when I need it like in the middle of a conversation, or at the checkout. Damn it. It is clearing, but selectively. Today not so bad. Tomorrow who knows? Cal 8)
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Just keep taking the pills until they refuse to give you any more Cal. :)
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HimBill, sage advice. Cal 8)
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The FDA just posted a warning about Viekira Pak and Technivie: http://www.fda.gov/Drugs/DrugSafety/ucm468634.htm
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Week 6 gone, I've heard tell of people starting to feel way better around this point???
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Week 6 gone, I've heard tell of people starting to feel way better around this point???
Congrats on passing the half-way point, byebyec! I know that was a significant milestone for me. :)
kim
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Week 6 gone, I've heard tell of people starting to feel way better around this point???
All uphill from here byebyeC... You've made it half way... you can do it!
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Thanks for the reminder, bbc. Six weeks tomorrow. And a full moon! Howlin' weather!
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All uphill from here byebyeC... You've made it half way... you can do it!
And by uphill I mean you'll be on the mountaintop looking out at the beautiful view called UND and SVR!
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Thanks for the reminder, bbc. Six weeks tomorrow. And a full moon! Howlin' weather!
And you too Else!
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Marianne,
You're halfway! You are doing it. I know it's hard but credit yourself fir what you've done my friend. It ain't been easy. You are a Warrior Princess! Cal :)
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It's all downhill from here byebyec. And I mean that in a most positive sense!
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Marianne,
How are you doing? I'm into week 11 now! Cal :)
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Marianne,
How are you doing? I'm into week 11 now! Cal :)
Yeah, what up Marianne? Have you gone off on a gator hunt with Tommy? ;)
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'dem gators musta done et her all up dontcha know. Ifn' I toll her twice I toll her once!!! Stay in the pirogue cher. 'dem criters is hungry Ima tollon ya!!
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Hi y'all,
Thank you for the good wishes :) Accumulation of riba took over and sent me to the actual crazy train... Docs finally got things worked out and i'm turning back into a functioning-ish human being.
Congrats Else on halfway too :)
Very happy for you Cali girl to be almost done!
Dreamin' the dream of this all in the rear view!
<3 Marianne
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By God & by golly, I guess the gators couldn't handle the Riba & spit her back out! :o :o :o Glad You are getting back on an even keel with the Meds there Marianne. I was beginning to wonder if You fell off the face of the earth. Good to see You back, get some rest & then catch up on all the unds , SVR12s , & SVR24s that hit the forums. Big ol' TEXAS SIZE SQUEEZE & A BEAR HUG from Your fellow Loony Toon down here in Lone Star Toon Town. ;) ;D :D :) 8) 8) 8) 8)
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Thank you Tommy :D
This is one crazy carnival ride we're on!
I'll be reading the good news, sayin' my prayers for all of us.
Really REALLY appreciate your support :)
Marianne
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Marianne , so sorry for Your distress. I can tell by the tone of Your key strokes that You must be feeling pretty bad! :'( :( I will graciously leave You to Your own devices until You get that free bubble up feeling back!! I will save the verbal sparring for a later time. Hope all the Good News at least cheers You up a little bit. Another indicator of how bad You feel is the lack of response to the gator comments!!!! Get To feeling better soon :P, We all miss Your ALASKAMO humor from the little IGMO house with the BEAR EAR antenna on top.
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Marianne, we miss you but the most important is to do what you need to do during the treatment. I had to step back from the forum for a few weeks during treatment for several reasons. Things were getting in my head... things I didn't even need to worry about.
The main thing is to take care of yourself and complete the treatment and join in when it's right for you. Love, Bree
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Thank you Bree,
I had really mild occasional depression recovering from an emergency gallstone attack and removal and recovery going into this. I mentioned it to my Dr. I know now that a lot of docs are prescribing antidepressants for any patients with any history of depression. Don't think my doc was up on this info since these meds are so new. So, when I turned from an generally gregarious happy person, to an unraveling, continually bawling/raging maniac, it took an ER visit and a follow up with my GP to notice and a few med changes to get me to feeling half human and back to somewhat of myself again.
Super hate being downersville... really hoping it doesn't take me till EOT to go back to being my generally jovial self...
Sorry if I'm oversharing (I have a proclivity), just thought an explanation may allay fears... No thoughts of harming myself. Could be God's way of giving me great compassion for those who struggle with anxiety and depression all of the time...
Love y'all,
Marianne
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Hi Marianne, Thank you...not over-sharing, just being honest and sharing. We have to go through so much. Kim shared about how the liver is the seat of emotions (Chinese medicine philosophy), so that in and of itself has an effect.
I went to the ER on my last treatment... I know the impact this has.
This time around, while everything was going really good overall, I had a huge anxiety attack at mid- treatment and became convinced that I needed to add ribavirin to my Harvoni treatment to hedge my bets as I saw so many cured with Harvoni and adding riba who had failed earlier treatments (like me). Never mind that I was a disaster on riba with interferon before... at first my doctor considered it (even though I down played my effects, he didn't even see me as a candidate for Veikera with riba). Once he saw the results of my 4 week labs as UND, he changed his mind and said no to adding the riba. He just didn't think it was a good idea and didn't want to do it. I was relieved and scared at the same time...
I became convinced that perhaps I needed it despite all evidence to the contrary... I had to take a forum break and work toward getting my belief system back in better shape. I was really helped by friends, especially one who is a cancer survivor. She talked me into believing with every part of my body that I was being cured ... even though I was "acting as if" in a way, it really helped me to move through that. After I got through that, it was like a turning point for me. It's like I claimed my life back like at the start of treatment. I started that way, in total belief, took a dip mid treatment, then ended strong. That's exactly why I started the "Nearing EOT - Ending Strong and Staying Positive" thread.
I know it's a different scenario, I just wanted to share how much we can get effected by all of this process not to mention how the drugs can effect us emotionally and physically plus we want to be cured once and for all. For me, it became really important to monitor "what goes in" mentally and emotionally.
Hang in there and do what you need to do to nurture yourself and get through this. This treatment does have an endpoint and the whole thing will lighten up a bit.
And, then we will all be singing and doing the virtual hula! 8) Love, Bree
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I hope I didn't just overshare too much!
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Welcome back and glad you're hanging in there Marianne.Do what you need to for however long you need to.The one thing we all have to keep telling ourselves is this isn't going to be forever and the cure is worth it.We'll be here when you get back from wherever the riba sends you. ;)
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Marianne,
My poor friend. As a fellow RIBA struggler I am with you. I know his hard this has been fir you, but you will be rewarded. The good thing about this, us that it's like childbirth, you forget the horrible bits!
You do what's right fir you and know that your forum family are always as close as a log in!
You are such a dear and such a special and hilarious woman, you may not think that but I can guarantee you will be you again soon. Have they reduced your ribas? Or are they making you battle on?
You know I was in ER too and in Hospital twice, so no over sharing here Chickie. It's all the drugs and you'll recover well. It will pass.
I agree with Bree, sometimes you need a break from the forum, too much information and emotional vulnerability don't mix. Do what you have too to get through. Whatever gets you through the night. Cal :)
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Marianne, Just catching up on reading posts, Just read Your latest one. I had not realized how bad thing had gotten for You. :( :( Sounds like You really need some serious R & R and Me time right now. Sure wish You could take a break from the Meds. for a little while to get it all back together! But We all know that ain't happening! Wish there was some way I could help out. About all I can do is send You some big old Texas Well Wishes and all the good thoughts & vibes I can muster. You have to think of Yourself first! That means taking care of Yourself above all, other wise You are not able to help Yourself and those around You! Do what You have to do to make things better for Yourself. It is not being selfish , It's self preservation so You can make it for the long haul.
Take care & remember!!!! We are just a key stroke away!!!!
The Humble Jester.
P.S. Strange as it seems, My G.I. Doc just scheduled Me for a HIDA scan of My gall bladder Yesterday. He is worried about gallstones that showed up pre-Tx. It will be happening next Friday.
Get better soon, You are sorely missed by Me as well as everyone else. You are part of the jigsaw puzzle that is the Hep C forum. Without You we are not complete :'( :'( :'( :'( :( :( :( ;)
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As my Tante used to say, "hard times are like a jeweler's tumbler. They either break you up or polish you to a high shine."
You shine, girl. I can tell that. Things are just ill for a bit while that tumbler is still turning.
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Thank you all for your well wishes, advice and support. I am def back on the upswing:) just may take a bit cause of how down low it got.
Bless each and every one of you. You've written on "the goodness of humanity" part of my heart and mind. You're the BEST!!!
Much love,
Marianne
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Marianne, Glad to see You getting back up & dusting off. Virtual shoulders to lean on can be a great help when needed, You got a bunch of them out here. Get back to Your usual abnormal self soon. Thoughts and prayers abound little lady. Take care of Yourself. See You Soon!
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Marianne,
I don't think you're crediting yourself enough for what you're doing. This aint easy and you're giving It everything you've got. Go Marianne our beautiful friend. Cal :)
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Else,
I'd say you had quite a gem of a Tante :)
Tommy,
My abnormal self is working it's way back to the surface and will spar in Spanglish, Frenchlish, Deutchlish etc. soon :)
Cal,
You are a literal Angel, I'd check my shoulders for wings if I were you <3
Marianne
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Wings? Oh no another place to get riba rash! 8) Cal
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Oh Cal :D Never ever riba rash on your wings! I forbid it! <3 <3 <3
Marianne