Aa
new guy who's experienced a few RediPen malfunctions
Hello all,
after reading some inspiring svr stories I've decide to participate in the forum.
I'm a 1a, I went thru the tx in '90 for 6 months. It didn't take. Now I'm on the PegIntron/ribavirin tx. Week 8 out of 48.
Here's the question...I've had a pen failure and didn't bring a backup along, (was out of state, etc) so went a week w/o a shot. Other than adding a week to the tx, could this have banjaxed the tx on some level.
I'm paranoid by nature.
For all of you svr...you are my lifeline.
after reading some inspiring svr stories I've decide to participate in the forum.
I'm a 1a, I went thru the tx in '90 for 6 months. It didn't take. Now I'm on the PegIntron/ribavirin tx. Week 8 out of 48.
Here's the question...I've had a pen failure and didn't bring a backup along, (was out of state, etc) so went a week w/o a shot. Other than adding a week to the tx, could this have banjaxed the tx on some level.
I'm paranoid by nature.
For all of you svr...you are my lifeline.
Hi Mike,
I guess you've been too smart to post lately but wondering how you've been feeling? I agree with most of what you write but here we don't see eye to eye nor should we. Here's my take.
---------------------------
Regarding Kalio2, yes, MH did the right thing by throwing him/her out. And yes, as you said, the posts were insulting, hurtful or belittling. But like the drunk shouting obscenties on the street corner, the posts were without content hard to take seriously, and in the end will have very little impact on this discussion group.
To me - the "mean" behavior you refer to in the past -- is far more insidious and has much more potential harm than the kalio2's of the world. Insults, character assasination and pure bile in the context of heated debate -- as we saw several months ago with a number of long-standing membbers-- and this is what really not only drives people away but equally worse, stiffles legitimate debate by intimiation.
I tbinkm you're on record for saying something like -- and forgive me please if I'm quoting someone else LOL -- that people are people and these things happen from time to time -- and that we all should have thicker skins.
Well, it's obvious to anyone knowing your treatment journey that you probably have one of the thickest skins in town along with a grande determination to fight this disease. However, not everyone here is Mike Simon and a lot of our skin's are more vunerable than yours appears to be, especially on these very powerful drugs. I'm feeling a lot better now, but in the past some of those exchanges literally made me ill and I had to back off being a human pinanta.
Believe it or not, until I arrived here, my feelings about forum moderation have been more anti-moderator than pro -- and for many of the reasons Kalio1 pointed out, i.e., substituting someone else's questionable discretion for that of the group.
But what I've seen and experienced here has changed my view dramatically. I don't blame the bile we see here on hep c at all. It happens in every internent discussion group unless responsibly moderated. I've seen groups brought down by this kind of bile and worse. But this is a Hep C discussion group and many of us are on treatment. Because of this single fact, people should go out of their way with courtesy and kindness toward each other and MH should support a safe and nurturing atmosphere with the implementation of the TOS it already has.
I know, some older members say, well, "we've been through worse and it always goes away". That's a sad commentary because it infers that it will always come back. How will be left standing -- those with the bile and those with thick enough skins to withstand?
-- Jim
I guess you've been too smart to post lately but wondering how you've been feeling? I agree with most of what you write but here we don't see eye to eye nor should we. Here's my take.
---------------------------
Regarding Kalio2, yes, MH did the right thing by throwing him/her out. And yes, as you said, the posts were insulting, hurtful or belittling. But like the drunk shouting obscenties on the street corner, the posts were without content hard to take seriously, and in the end will have very little impact on this discussion group.
To me - the "mean" behavior you refer to in the past -- is far more insidious and has much more potential harm than the kalio2's of the world. Insults, character assasination and pure bile in the context of heated debate -- as we saw several months ago with a number of long-standing membbers-- and this is what really not only drives people away but equally worse, stiffles legitimate debate by intimiation.
I tbinkm you're on record for saying something like -- and forgive me please if I'm quoting someone else LOL -- that people are people and these things happen from time to time -- and that we all should have thicker skins.
Well, it's obvious to anyone knowing your treatment journey that you probably have one of the thickest skins in town along with a grande determination to fight this disease. However, not everyone here is Mike Simon and a lot of our skin's are more vunerable than yours appears to be, especially on these very powerful drugs. I'm feeling a lot better now, but in the past some of those exchanges literally made me ill and I had to back off being a human pinanta.
Believe it or not, until I arrived here, my feelings about forum moderation have been more anti-moderator than pro -- and for many of the reasons Kalio1 pointed out, i.e., substituting someone else's questionable discretion for that of the group.
But what I've seen and experienced here has changed my view dramatically. I don't blame the bile we see here on hep c at all. It happens in every internent discussion group unless responsibly moderated. I've seen groups brought down by this kind of bile and worse. But this is a Hep C discussion group and many of us are on treatment. Because of this single fact, people should go out of their way with courtesy and kindness toward each other and MH should support a safe and nurturing atmosphere with the implementation of the TOS it already has.
I know, some older members say, well, "we've been through worse and it always goes away". That's a sad commentary because it infers that it will always come back. How will be left standing -- those with the bile and those with thick enough skins to withstand?
-- Jim
Well I've been on the redipen for 16 weeks and had two mishaps myself - one my doing, one not. I just as easily could have messed up the pegasys probably.
My doctor too believes that peg-intron is the better treatment. It's neither here nor there though - but going with what your DOCTOR believes is important.
You need to be able to hash out the little things but agree on the MAJOR ones. If you are not comfortable with his decision perhaps you should find a different doctor who prefers the pegasys?
I am an underweight person who is on peg-intron but still getting the full dose to the "5". Has it helped clear the virus? No not really. Comparitively (sp?) at 117 vs. 180 you would think it would be MORE medication in me to clear. It's not always the quantity I'm thinking.
What matters is how YOUR body responds to the treatment more than WHICH one you are on. I think you could have results with EITHER but it depends on your physiology.
My doctor too believes that peg-intron is the better treatment. It's neither here nor there though - but going with what your DOCTOR believes is important.
You need to be able to hash out the little things but agree on the MAJOR ones. If you are not comfortable with his decision perhaps you should find a different doctor who prefers the pegasys?
I am an underweight person who is on peg-intron but still getting the full dose to the "5". Has it helped clear the virus? No not really. Comparitively (sp?) at 117 vs. 180 you would think it would be MORE medication in me to clear. It's not always the quantity I'm thinking.
What matters is how YOUR body responds to the treatment more than WHICH one you are on. I think you could have results with EITHER but it depends on your physiology.
I think the distinguishing aspect of K2's posts was that almost without exception they were designed to insult, hurt or belittle. I've been here for several years and I've seen many members engage in mean behavior but this Kalio2 was the first that I can recall whose only agenda was meanness. Kalio2 offered absolutely nothing aside from mean and isipid drivel and I am thrilled that I will no longer see that name here. While I generally don't like censorship sometimes a line should be drawn and I feel that MH drew the line appropriately and I want to THANK YOU MH. Mike
Thanks, Forsee, for pointing that out, I saw my name on a response, so I then did find your post, although I do admit I typed half and slept on the rest! LOL I do appreciate it, and probably would have missed it, as even though I haven't posted much, I haven't really read much either.
I do want to check in from time to time, as I want to see jm's results and good news when it comes. I always enjoy his posts, too.
You did say it well-I don't ever want to offend anyone, and I get the feeling cougar has felt offended by me, and if so, it wasn't intentional, sometimes posting things sound worse than they mean to.
Cougar, if that is the case, I apologize to you. We do agree on more than you might realize.
I also have tried very hard to stay out of the tx advice area. This is where it is especially important to remember "to each his own". Except for myofascial issues, ACV, etc., I just don't feel comfortable advising, especially someone I don't know. Those issues above, I felt I might have extra insight, so those topics I did handle differently.
I think it is important for everyone to realize that comments in here posted by everyone, including me, should be checked for accuracy. I have caught some of my mistakes myself, others have pointed them out for me. Honest mistakes are different than intentional ones. I know it is easier not to, but everything should be investigated by each who read it.
I think sometimes I like to avoid confrontation because I know I can dish it out very well myself, and I don't want to do that, as it can be very hard to resist, and all it does it make things worse.
Let's face it....no group of people will ever agree on everything. I read the book on John Adams from David McCullough (his 1776 book was excellent too), and even back then, the debates were bitter, and even Jefferson back-stabbed him-but they were able to get past it. Good thing huh?
I do want to check in from time to time, as I want to see jm's results and good news when it comes. I always enjoy his posts, too.
You did say it well-I don't ever want to offend anyone, and I get the feeling cougar has felt offended by me, and if so, it wasn't intentional, sometimes posting things sound worse than they mean to.
Cougar, if that is the case, I apologize to you. We do agree on more than you might realize.
I also have tried very hard to stay out of the tx advice area. This is where it is especially important to remember "to each his own". Except for myofascial issues, ACV, etc., I just don't feel comfortable advising, especially someone I don't know. Those issues above, I felt I might have extra insight, so those topics I did handle differently.
I think it is important for everyone to realize that comments in here posted by everyone, including me, should be checked for accuracy. I have caught some of my mistakes myself, others have pointed them out for me. Honest mistakes are different than intentional ones. I know it is easier not to, but everything should be investigated by each who read it.
I think sometimes I like to avoid confrontation because I know I can dish it out very well myself, and I don't want to do that, as it can be very hard to resist, and all it does it make things worse.
Let's face it....no group of people will ever agree on everything. I read the book on John Adams from David McCullough (his 1776 book was excellent too), and even back then, the debates were bitter, and even Jefferson back-stabbed him-but they were able to get past it. Good thing huh?
Chinese medicine is rife with liver/anger stuff, and macrobiotics is based on ancient Japanese temple food, and it's got alot to say about that same nexis. And that bilious/phlegmatic, etc. "humorous" medicine comes from the Greeks, I think. I wonder if they have a similar source, which I posit (from the hip) is the Silk Road. Or, maybe not, and that's silly.
This Riba-rage is nasty, and it's funny who we take it out on. And it's funny how nice it feels to get a response, and easy to feel "invisible", so I can see how this could be an outlet for our distress. But sheesh, I counted like maybe 25% actual relevent posts a thread or so ago.
This Riba-rage is nasty, and it's funny who we take it out on. And it's funny how nice it feels to get a response, and easy to feel "invisible", so I can see how this could be an outlet for our distress. But sheesh, I counted like maybe 25% actual relevent posts a thread or so ago.
I see you didn't take your own advice and leave last night...or is it tomorrow already. LOL.
I still think K2 and the like-minded jocksters are easy bait to go after. I'd like to see this same energy directed directed toward many long-time posters when they engage in personal attacks for no other reason than someone disagrees with one of their sacred cows.
I used to do that a while back, and instead of finding support, got jumped on by other old-timers accusing me of being some sort of internet cop. Ultimately, I gave up as it became apparent nothing was going to change as long as management allowed it and more important I was just too sick to fight any battles other than with the virus.
I do see Can-Do's point regarding some of the language directed at K2. However, while it's not my style, there is a difference (and somewhat of an internet tradition) of "flaming" very offending posters who obviously have violated TOS by any standard of measure. Retaliatory flaming therefore is very different from abuse heaped for no other reason than someone thinks someone else's opinions are wrong.
The problem, however, is that escalated words regardless of provocation lead to escalated words, and pretty soon everyone seems to be in the same tub of mud, which by the way is pretty much the standard bait of some internet jocksters.
-- Jim
I still think K2 and the like-minded jocksters are easy bait to go after. I'd like to see this same energy directed directed toward many long-time posters when they engage in personal attacks for no other reason than someone disagrees with one of their sacred cows.
I used to do that a while back, and instead of finding support, got jumped on by other old-timers accusing me of being some sort of internet cop. Ultimately, I gave up as it became apparent nothing was going to change as long as management allowed it and more important I was just too sick to fight any battles other than with the virus.
I do see Can-Do's point regarding some of the language directed at K2. However, while it's not my style, there is a difference (and somewhat of an internet tradition) of "flaming" very offending posters who obviously have violated TOS by any standard of measure. Retaliatory flaming therefore is very different from abuse heaped for no other reason than someone thinks someone else's opinions are wrong.
The problem, however, is that escalated words regardless of provocation lead to escalated words, and pretty soon everyone seems to be in the same tub of mud, which by the way is pretty much the standard bait of some internet jocksters.
-- Jim
Okay, children, break it up, can it, give it a rest , seems to me you're really on the same page with this. PLEASE don't make me start singing "kids'll eat ivy, too, wouldn't you".....
Debdeb, that kind of bad behavior is "bilious," alright. You really nailed it. I've often speculated about the connection between liver disease and the foul temperament we see around here on occasion. The last episode was especially devious, though. A person who will banalize other people's pain, little joke by little joke, is nothing less than a monster. A very tiny monster.
Debdeb, that kind of bad behavior is "bilious," alright. You really nailed it. I've often speculated about the connection between liver disease and the foul temperament we see around here on occasion. The last episode was especially devious, though. A person who will banalize other people's pain, little joke by little joke, is nothing less than a monster. A very tiny monster.
Well at least we agree on that. Why his remarks went unchecked for as long as it did is beyond me. And if i had been kailo1 i would have been mass emailing med help.
That's the trouble when you get a bunch of distinct personalities together in one place, there won't be one of us who is "completely" satisfied, that's an impossibility...especially if it's not really moderated...but we can only do our best right? And yes, best case scenario would have been to kick the guy out as soon as he showed everyone he wouldn't stop harassing people, especially newbies, then no one would have been given the opportunity to lower themselves to his level or whatever...but it happened the way it happened and I for one am glad that he's gone...plus, if I would of had to read that MUCH LUV sign off one more time I think I would of popped my cookies, he he he....
Like i said, some of what he said was uncalled for. What do you want me to do? Lower my self to his level and start calling him stupid and ignorant? And i don't have any problem at all with the jokes and clowning around. But i have read post from even some of the oldtimers here not to happy with some of it. So i figure if they are offended by it and been here long enough to see and hear it all then i have to believe that some of the new people popping in here are offended some what. But maybe not
There is a lot of sniping and taking of offense on many threads, which makes the site much less helpful, and ultimately less worth precious attention-span. But that K2 person was clearly giving into his/her bilious nature, plus drugs. I haven't read lately (see above) but I'm glad if those little nasty droppings have left the forum.
Hmmm...uncalled for? telling newly diagnosed people to "get a clue" when they ask a question?? And countless other clever little ditties to newbies and most anybody who posts? And nary a word about HCV but just some silly insult?....maybe a tad more than "uncalled for."
I just tried to remember how completely freaked out and scared I was when I was newly diagnosed and to be greated like that by that "individual" would of completely freaked me out. That's the biggest problem I had with him.
You do make a few good points, and maybe I'm just covering my own bottom, but if I were a newbie and I saw joking around on this board....I'd just figure the denizens were joking around amongst each other, if I had a sense of humor I probably would be okay with it, maybe I wouldn't...but I'm scratching my head and I don't seem to recall any member at all take on a newbie question with a joke, except this "individual."
I am guilty of joking around, I stand accused...but this is scary stuff, and I can only take so many tales of horrible side effects, dashed hopes of responding or clearing, people I like having to deal with liver damage progression, etc without feeling really bad and needing relief....through silly humor sometimes, or a little handholding and support, whatever. If I offend anyone I'm sorry. I just don't think you can equate joking around amongst the members with what this guy did, but maybe I conveniently think that...
I just tried to remember how completely freaked out and scared I was when I was newly diagnosed and to be greated like that by that "individual" would of completely freaked me out. That's the biggest problem I had with him.
You do make a few good points, and maybe I'm just covering my own bottom, but if I were a newbie and I saw joking around on this board....I'd just figure the denizens were joking around amongst each other, if I had a sense of humor I probably would be okay with it, maybe I wouldn't...but I'm scratching my head and I don't seem to recall any member at all take on a newbie question with a joke, except this "individual."
I am guilty of joking around, I stand accused...but this is scary stuff, and I can only take so many tales of horrible side effects, dashed hopes of responding or clearing, people I like having to deal with liver damage progression, etc without feeling really bad and needing relief....through silly humor sometimes, or a little handholding and support, whatever. If I offend anyone I'm sorry. I just don't think you can equate joking around amongst the members with what this guy did, but maybe I conveniently think that...
All this capability is reminding me of something.
A canner exceedingly canny
one day
remarked to his granny
a canner can can
anything that he can
but a man can't can
a can
can he?
That's okay. I can't (ahem) figue out what that means either, but there's a lot of canning in it. I do genuinely like a can-do attitude. Out here in La-La land it would probably be
Kendu?
The answer being -- Kendu2 ?
[it's terrible what some people will post at MedHelp]
A canner exceedingly canny
one day
remarked to his granny
a canner can can
anything that he can
but a man can't can
a can
can he?
That's okay. I can't (ahem) figue out what that means either, but there's a lot of canning in it. I do genuinely like a can-do attitude. Out here in La-La land it would probably be
Kendu?
The answer being -- Kendu2 ?
[it's terrible what some people will post at MedHelp]
First id like to say that i did not agree with some of what k2 said as it was uncalled for, some of what he said i thought was down right funny. But i also thought that some who responded by calling names such as stupid, ignorant was acting no better then he was.
Second, for those who wonders how many sick new people came here and read that stuff were offended and left you could also say the same thing when were acting silly and have are p**p threads or sex jokes. A new sick person comes here reads that stuff might feel that this forum doesn't take hcv to serious or is offended by the language being used.
Then you might have some people offended because anytime there is a dabate going on some feel the need to butt in and give their 2 cents worth all the time no matter what.
My point is, and i don't mean to offend anybody that no matter what is said or who says it somebody is going to be offended.
So for those that think a moderator is needed, then what if they have no sense of humor and bans anyone joking around, or they feel we have to stay on the hcv topic and nothing else. This place could become boring real fast.
So like the old saying "becareful what you wish for"
Id also like to add i don't post under no other name, don't need to, don't have the time and frankly don't care. I say whats on my mind and don't hide behind a fake id. But since a few said i was then others jump right on and ran with it. That is why i always say ask your doctor and don't take what you read on forums as gospel. Now blast away folks i can take it.
Second, for those who wonders how many sick new people came here and read that stuff were offended and left you could also say the same thing when were acting silly and have are p**p threads or sex jokes. A new sick person comes here reads that stuff might feel that this forum doesn't take hcv to serious or is offended by the language being used.
Then you might have some people offended because anytime there is a dabate going on some feel the need to butt in and give their 2 cents worth all the time no matter what.
My point is, and i don't mean to offend anybody that no matter what is said or who says it somebody is going to be offended.
So for those that think a moderator is needed, then what if they have no sense of humor and bans anyone joking around, or they feel we have to stay on the hcv topic and nothing else. This place could become boring real fast.
So like the old saying "becareful what you wish for"
Id also like to add i don't post under no other name, don't need to, don't have the time and frankly don't care. I say whats on my mind and don't hide behind a fake id. But since a few said i was then others jump right on and ran with it. That is why i always say ask your doctor and don't take what you read on forums as gospel. Now blast away folks i can take it.
I came on this forum to seek information and to learn from others through their experiences. I noticed from other threads that their seem to be some tit for tat arguements( i can understand why in some cases) Its ashame because it appears a great forum( informative) Is this an American thing ( don't mean to cause offence)
I don't know a whole lot about Infergen but discussing daily dosing with your doc might be a next step, given that this is your second round of treatment and that you're tolerating the meds so well. There should be some studies regarding daily verus 3X-week dosing out there. Don't know if I can physically join you, but I'll be there in spirt, I promise :)
-- Jim
-- Jim
Thanks guys...yes, I did bring it on myself...and I'm sure my doc will say something like Kalio's did...He doesn't believe in 4 week PCR's. I insisted mostly because it's my 2nd round of tx and will base my length of tx on when I clear...definitely not interested in shortening as I don't think it's wise given the fact I'm a non responder...however, would give me the option to argue extending beyond 48 weeks.
I am 44, genotype 1, no biopsy...infected in 2003. Tolerating Infergen 18 mcg 3 X week fairly well. I'm ready to do daily, always have been...may very well be time for a 2nd opinion. I too, feel like it's a good time to up the dosage and make the best of the next 8 weeks...and get me to undetectable. Wanna go to the doc with me Jim and help me convince him to change my tx? I can hear him now... :)
I am 44, genotype 1, no biopsy...infected in 2003. Tolerating Infergen 18 mcg 3 X week fairly well. I'm ready to do daily, always have been...may very well be time for a 2nd opinion. I too, feel like it's a good time to up the dosage and make the best of the next 8 weeks...and get me to undetectable. Wanna go to the doc with me Jim and help me convince him to change my tx? I can hear him now... :)
I have been reading all about the problem of Kalio2 being booted off.
Spacecoast4 seems to think that it's just the internet and not real. Well, as far as I'm concerned this forum deals with some very REAL sick people and when some one posts that the meds did not work and decided to try the Chinese treatment and some one comes back and said they like Chinese fried rice too is mean, hurtful and I'm being kind because there is some thing else I would rather say.
When some one attacks one of us who belongs here they attack all of us, and we will not put up with it.
To all my friends be well and remember we are stronger then those who wants to destroy.
BB
Spacecoast4 seems to think that it's just the internet and not real. Well, as far as I'm concerned this forum deals with some very REAL sick people and when some one posts that the meds did not work and decided to try the Chinese treatment and some one comes back and said they like Chinese fried rice too is mean, hurtful and I'm being kind because there is some thing else I would rather say.
When some one attacks one of us who belongs here they attack all of us, and we will not put up with it.
To all my friends be well and remember we are stronger then those who wants to destroy.
BB
ASmile4U/Jim - I certainly relate to your concerns about the pcr and whether the doc finds it relative. I see the doc Wed for the first real visit since I started tx. I'm a little nervous about finding out his take on my having a less than 2 log drop on my 12wk pcr-which I argued for and his nurse appoved. I will be prepared with copies of all my labs as well as printouts of the studies that Jim and Cuteus were kind enough to provide me. Actually a little worried how he will react to my attempt to provide him with studies which he may already be aware of. For me the 12wk was as much for my own mental health on tx. In the beginning I decided not to worry about the results of the meds til I got the 12weeks and then I could hardly think of anything except an answer one way or the other.
I trust him and his knowledge but last visit (pre tx)I actually had to say grab a seat doc I got questions..to keep him from just checkin me quick an movin on to the next patient. Not sure regarding extending tx or upping riba if they'll be a point of 'okay Don you did some homework but so have I and these are my conclusions.
sindog - oh yeah. Hate it when my hands don't work. This morning emptying the dishwasher my gloves I knocked the silverware container over on the counter when I placed it there. Within micro seconds I'd thrown em all on the floor and banged my fist down twice on the counter, spun a tupperware container across the room. Lately my kid and Dad don't even bother to look up when I toss stuff.
Be Well All,
Don
I trust him and his knowledge but last visit (pre tx)I actually had to say grab a seat doc I got questions..to keep him from just checkin me quick an movin on to the next patient. Not sure regarding extending tx or upping riba if they'll be a point of 'okay Don you did some homework but so have I and these are my conclusions.
sindog - oh yeah. Hate it when my hands don't work. This morning emptying the dishwasher my gloves I knocked the silverware container over on the counter when I placed it there. Within micro seconds I'd thrown em all on the floor and banged my fist down twice on the counter, spun a tupperware container across the room. Lately my kid and Dad don't even bother to look up when I toss stuff.
Be Well All,
Don
I thought you were going somewhere else after the "whipping cream and blueberries". LOL. Glad you found something that works.
-- Jim
-- Jim
Sorry to tread on your thread. Some people (like I used to) have a gag reflex when taking the not so friendly Ribavirin. Try this. Grind up the little pills and dump the powder into a glass of Minute Maid Mango Tropical Light juice, stir well, drink it down. Have a slice of toasted sesame seed bagel topped with orange marmalade. Then smoke some Medicinal Marijuana, have a couple of slices of cantaloupe along with some diet cottage cheese. As a reward after all that, prepare a bowl of fresh blueberries and drown them in Land-O-Lakes light Whipping Cream. Sit down and watch a good movie. This works well for me. Let me know how it works for you...
Magnum
Magnum
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