Aa
Why Those Not on Tx Need Support - One Perspective
<B><A href="http://dictionary.reference.com/search?q=support">DEFINITION OF SUPPORT</a></b>
<B>WHY THOSE NOT ON TX NEED SUPPORT:</b>
It was recently asked in another thread what sort of support would someone who is "happy, healthy, asymptomatic and content in their decission (to not treat)" need? I am not trying to be sarcastic, but what right does anyone have to ask this question of another with a chronic illness? Why should anyone with Hepatitis C, or any chronic illness, have to justify their need for support?
<B>MY ANSWER (as one not on tx):</b> They shouldn't! Anyone who has a chronic illness needs support for a multitude of reasons.
Speaking for myself, I have a need to share in the experiences, feelings and thoughts of others infected with a similar illness, whether treating or not. Having a chronic illness is an emotional burden. It is not something that can or should be forgotten or taken lightly, even in the absence of symptoms. Just because someone thinks it is the right decision for them to wait does not mean the waiting in and of itself is not stressful. Obviously I have determined the benefits of waiting at the moment outweigh the benefits of treating, but I still need support while I wait, and so I suspect, do others who have made a similar decision.
(CONTINUED BELOW)
<B>WHY THOSE NOT ON TX NEED SUPPORT:</b>
It was recently asked in another thread what sort of support would someone who is "happy, healthy, asymptomatic and content in their decission (to not treat)" need? I am not trying to be sarcastic, but what right does anyone have to ask this question of another with a chronic illness? Why should anyone with Hepatitis C, or any chronic illness, have to justify their need for support?
<B>MY ANSWER (as one not on tx):</b> They shouldn't! Anyone who has a chronic illness needs support for a multitude of reasons.
Speaking for myself, I have a need to share in the experiences, feelings and thoughts of others infected with a similar illness, whether treating or not. Having a chronic illness is an emotional burden. It is not something that can or should be forgotten or taken lightly, even in the absence of symptoms. Just because someone thinks it is the right decision for them to wait does not mean the waiting in and of itself is not stressful. Obviously I have determined the benefits of waiting at the moment outweigh the benefits of treating, but I still need support while I wait, and so I suspect, do others who have made a similar decision.
(CONTINUED BELOW)
It's moving to see this mutual caring for our friend, Scott. I consider him a buddy: we have wives and kids, we both are on this extended thing together, we react to the poseur among us with strong feelings, we both fly off the handle at times. Above all, we're going to make it through this trial of fire. God Bless, Dave
Thanks to you, as well. I'm not kidding about hunt and peck and just when I posted to Cuteus, there you were. Bless you all.
Wow. That was nice of you to say those things to me. No wonder Scott likes it here. I have no "Hep" support group. Not many people know how hard it is one the "unsick" one(s). Thank you.
I hope and pray from the bottom of my heart that Scott remains clear and your family never has to go through this again. You are nearing the end of a terribly long and hard journey - you have made it this far and you will win!! My wish is for you and Scott to happily grow old together surrounded by your children and grandchildren and look back at this time and be able to laugh at the dust, the lampshades, and _________.
Wishing your family very much love, strength, health and grace...
G
Wishing your family very much love, strength, health and grace...
G
Thanks all who answered regarding my life insurance dilemma. It does make sense what you said. I guess I wont panic about it anymore!
Poor Woman, that was very touching. I agree with everything Cuteus had to say. OHC
Poor Woman, that was very touching. I agree with everything Cuteus had to say. OHC
You have amazing expressive skills, we need you to take over posting when scott lets "someone" get to him...lol.
He is extremely fortunate to have you by his side to aid him when his balance waivers. And you are equally fortunate because life has blessed you with your soulmate.
We love scott and worry that WE, his online family, wont have him around because of this bickering. We try to calm him, but scott is scott and that's what makes him dear.
I am fortunate for having witnessed his caring and concern for others and I wish this persons would take their agenda elsewhere.
I promise to aid Scott when the top is wildly boiling over...
Thank You so very much for allowing us a peek into the life of love and struggles of a dear online friend.
be well always
ivette
He is extremely fortunate to have you by his side to aid him when his balance waivers. And you are equally fortunate because life has blessed you with your soulmate.
We love scott and worry that WE, his online family, wont have him around because of this bickering. We try to calm him, but scott is scott and that's what makes him dear.
I am fortunate for having witnessed his caring and concern for others and I wish this persons would take their agenda elsewhere.
I promise to aid Scott when the top is wildly boiling over...
Thank You so very much for allowing us a peek into the life of love and struggles of a dear online friend.
be well always
ivette
Hi, sweetie.
You knew I'd post (hunt and peck; computer illiteratacy notwithstandinding). I'm obsessed. And, yes, the garden was a mess but when you left for work, I went outside and choppped down the bushes, pulled up the perennials and tossed some corn seeds onto the lawn. Would you mind sleeping outside a few weeks so you can chase the squirrels away until it comes up?
I know you don't need any help here, but, I just want you to know that I think you're a pretty incredible guy.
You folks here have been really important to us during the last year and almost a half. I would read from time to time what Scott was spending so much time on and realized the only place he could whine and complain was here because he was trying to be "O.K." for me and the kids at home. Little did he know that I knew he was going through hell and putting us through it, too.
Many times when he was crying about the lampshade being crooked or screaming about the dust that wasn't there, I would leave and go by the river parkway and cry and pray. He always said sorry later and took me out for surf and turf(one of the benefits of this horrible treatment). I could never help him so I'd just sit and let him go through it. He would say no one understands unless they've been through it. One time, after many hours of riba rage and crying he said he just needed a hug but he didn,t want to be touched(????????????) I just sat and cried with him.
You guys KNOW how to hug without ever touching each other. Thank you for helping us.
Yes, treating is bad. I barely made it. I am in therapy (we have alot of other stresses,too). But, he was told 5-15 years and then-worse (transplant, cancer, cirrhosis, etc). We were terrified every day for almost two years about 'something' to do with HCV. Except he got good news (EVR, good tests etc). He has fought hard. He has been to hell. And he and I would do it again -please, please pray we don't have to. I need him, the kids need him and he has things to do yet that he knows now he doesn't have the luxury of putting off forever. We have plans.
The kids are 17 and 18. We have been through alot over the years (too much) and now when eveything you hope to do when they are on there own, I don't want to miss out.
You don't make plans and then treat. You treat and then make plans. Some of you are are early dx or stage 1 or type 2.
You should treat now and 'if' it doesn't work, then try 'better living and better eating' to stave off further damage. But why wait when it's easier now and you just might be done with it? Do you want to get like us? Fighting it now after all the other **** we've been through in life only to find out now that we may not even get a chance to make up to each other for all the hurt we've caused each other? Taking on this battle when we finally are old enough and tired enough to just rest and enjoy each other (or life, in general)?
I'M pro treatment because of Scott. I want him to live.
Please don't be afraid. I thought It would never end and now we're five shots from done (if he isn't secretly hoarding his half empties for MORE extended treatment). And, yes, it is hard. But you will be able to handle it with heavenly help and boards like this. You and your Drs. will know when it's time.
P.S. One of you thought that Scott was the "enemy" that is haunting Thand-out. She said it was a woman. I can assure you that Scott is a man. I always thought he looks like a young Mel Gibson from the Mad Max days only taller (although he now looks like a young Mel who's aged 40 years and has cracked sores in the corners of his mouth, red rash on his face and skin as dry as my heels of my feet). We get romantic by reading MKAndrews until the mood hits and then run off to the bedroom to scatch his rash and rub cream all over him. You girls may flirt all you want with Scott. I gaurantee he will be flattered and then fall asleep reading your post.
I love you, honey. Be well.
You knew I'd post (hunt and peck; computer illiteratacy notwithstandinding). I'm obsessed. And, yes, the garden was a mess but when you left for work, I went outside and choppped down the bushes, pulled up the perennials and tossed some corn seeds onto the lawn. Would you mind sleeping outside a few weeks so you can chase the squirrels away until it comes up?
I know you don't need any help here, but, I just want you to know that I think you're a pretty incredible guy.
You folks here have been really important to us during the last year and almost a half. I would read from time to time what Scott was spending so much time on and realized the only place he could whine and complain was here because he was trying to be "O.K." for me and the kids at home. Little did he know that I knew he was going through hell and putting us through it, too.
Many times when he was crying about the lampshade being crooked or screaming about the dust that wasn't there, I would leave and go by the river parkway and cry and pray. He always said sorry later and took me out for surf and turf(one of the benefits of this horrible treatment). I could never help him so I'd just sit and let him go through it. He would say no one understands unless they've been through it. One time, after many hours of riba rage and crying he said he just needed a hug but he didn,t want to be touched(????????????) I just sat and cried with him.
You guys KNOW how to hug without ever touching each other. Thank you for helping us.
Yes, treating is bad. I barely made it. I am in therapy (we have alot of other stresses,too). But, he was told 5-15 years and then-worse (transplant, cancer, cirrhosis, etc). We were terrified every day for almost two years about 'something' to do with HCV. Except he got good news (EVR, good tests etc). He has fought hard. He has been to hell. And he and I would do it again -please, please pray we don't have to. I need him, the kids need him and he has things to do yet that he knows now he doesn't have the luxury of putting off forever. We have plans.
The kids are 17 and 18. We have been through alot over the years (too much) and now when eveything you hope to do when they are on there own, I don't want to miss out.
You don't make plans and then treat. You treat and then make plans. Some of you are are early dx or stage 1 or type 2.
You should treat now and 'if' it doesn't work, then try 'better living and better eating' to stave off further damage. But why wait when it's easier now and you just might be done with it? Do you want to get like us? Fighting it now after all the other **** we've been through in life only to find out now that we may not even get a chance to make up to each other for all the hurt we've caused each other? Taking on this battle when we finally are old enough and tired enough to just rest and enjoy each other (or life, in general)?
I'M pro treatment because of Scott. I want him to live.
Please don't be afraid. I thought It would never end and now we're five shots from done (if he isn't secretly hoarding his half empties for MORE extended treatment). And, yes, it is hard. But you will be able to handle it with heavenly help and boards like this. You and your Drs. will know when it's time.
P.S. One of you thought that Scott was the "enemy" that is haunting Thand-out. She said it was a woman. I can assure you that Scott is a man. I always thought he looks like a young Mel Gibson from the Mad Max days only taller (although he now looks like a young Mel who's aged 40 years and has cracked sores in the corners of his mouth, red rash on his face and skin as dry as my heels of my feet). We get romantic by reading MKAndrews until the mood hits and then run off to the bedroom to scatch his rash and rub cream all over him. You girls may flirt all you want with Scott. I gaurantee he will be flattered and then fall asleep reading your post.
I love you, honey. Be well.
I'm sure, in this age of the computers and easy cross referencing, the insurance co knows about the hep c. And I would bet the insurance company would love to have a reason to disqualify you, which they can do @ their discration if the chance arises. So I would be very careful how an inquiry would be worded. Its kinda like stickin' a stick in a hornet's nest!
Oh yeah... I forgot I did try to increase my life insurance just before dx and they asked for new labs but I was dx before they came to take them so I just left it as was since they can't refuse me on that policy. LL
I waited for years to treat. I was not very symptomatic and once I got over the initial panic, tended to forget it. I still drank on occaision, but never heavily. When my last bx showed that the disease was progressing, although slowly, my wife and I reasoned that now was a good time to treat while I was still relatively healthy.
I fully support anyone's right to treat or to wait. I believe that herbs, not drinking, healthy choices, etc. can help the liver, but not cure it. I take equal offence at someone telling a non-tx-er they are wrong to wait as I do a non-tx-er telling me I am wrong to treat. And if someone is posting because of a spouse, child, parent, or friend with Hep C, I believe they are equally welcome here.
My dr echoed many when he said that Hep C will <b>probably</b> not kill me. As a man, I know that I will get prostate cancer if I live long enough, but that doesn't mean I am removing my prostate anytime soon. Risks are everywhere and we all make choices.
Keep in mind that many of us are more easily angered than normal. Remember not to feed the trolls and encourage the kids to play nice in the sandbox.
I fully support anyone's right to treat or to wait. I believe that herbs, not drinking, healthy choices, etc. can help the liver, but not cure it. I take equal offence at someone telling a non-tx-er they are wrong to wait as I do a non-tx-er telling me I am wrong to treat. And if someone is posting because of a spouse, child, parent, or friend with Hep C, I believe they are equally welcome here.
My dr echoed many when he said that Hep C will <b>probably</b> not kill me. As a man, I know that I will get prostate cancer if I live long enough, but that doesn't mean I am removing my prostate anytime soon. Risks are everywhere and we all make choices.
Keep in mind that many of us are more easily angered than normal. Remember not to feed the trolls and encourage the kids to play nice in the sandbox.
Personally I would not change my coverage (unless comfimed with my co.). Most of the time with insurance if your covered at dx you can keep it as is, but any changes or lapses after dx often affect that. You could ask you insurance company. I would also bet there are laws on this so they can't just drop anyone when they get sick. It's the changes or lapses in coverage that usually get people cancelled out. Nice day...LL
don't know much about life insurance, next to nothing in fact, but I'm laboring under the illusion that it's a contract. You pay the premiums and they agree to cough up money if you die. Unless the form of death is explicitly excluded by the terms of contract (eg suicide) you are covered. As long as you pay your premium you can go (almost) any way way you choose.
Thank you for your eloquent story. I also have decided not to treat, your words are refreshing.
totemman
totemman
You will be covered because you already had insurance and then found out you had hep c so that won't be a problem. Don't go for the lower rate right now though because the meds will show up...Just leave everything as is until you are off the meds..
Still waiting for someone to answer my life insurance question, do I tell um or just hope for the best? I posted up above about it. All the bickering going on I am afraid no one will see it.
Hi everybody, yeah lots of good stuff on here and real cool people too! Misery loves company in a real good way on here and what a great way to communicate with each other ..man I love it and all you heppers sound so much like me on any given day that it's a pleasure to be able to be a part of it. Support is all good regardless of why and on here it's about HCV and making the best of a bad situation! But actually getting to do it with people that know what it's like is a major bonus.....way better than a doctor that has never had the disease, or family that don't want you to have it! So many thanks and stay strong and keep hangin in there.....laters
We all know who posted the addressed question in this thread, so I will get right to it. It was posted motivated by a regular complain that this forum is tx oriented and those not in tx don't feel part of the group. That was it.
Lately, I've noticed that everytime I type "those with hcv symtoms OR not in tx", it is interpreted to be only the latter. The first part is completely ignored.
That statement it is NOT to imply that those not on TX need to justify, ad nauseaum, to those on tx. I for one have read every reason. We have made our decissions.
We should ALL post the reasons for our choices when a new person is inquiring about to tx or not, because it presents issues they might not have considered yet.
You do not need to justify your choice and no one is asking you to. These are choices for which we are accepting possible consequences,(those on or not on TX ).
When I make that statement, please do not TRANSLATE to meaning; only those on TX can post here.
It is only those not in tx, that choose to post with snippy remarks which will trigger an emotional response, and That is their only "contribution" that I find an issue with. NOTHING else. I will continue to have an issue with that, and it has nothing to do with their choice not to tx.
Gwithhepc; you have made a grueling decission for you and your daughter, and you have enlightened me as to what needs are been filled for you here. That is a welcome contribution.
I can't recall if you ever made snippy, flaming remarks so I have no issue with you personally. Your point is clearly expressed without the added "fire feeding" comments.
You do realize that there is a limitation for those not on tx OR hcv symptoms, in forums like this. I don't know if it is good or bad, but again, it is kind of hard for us to offer:"I am glad you have no aches and are feeling so healthy today" support when we feel like ****....I know you understand.
Hey you and I are neighbors, if you want, you and your 13yr old and I and my 14yr old can meet and see "Moving Out" or something.
Just a thought.
Be well
Lately, I've noticed that everytime I type "those with hcv symtoms OR not in tx", it is interpreted to be only the latter. The first part is completely ignored.
That statement it is NOT to imply that those not on TX need to justify, ad nauseaum, to those on tx. I for one have read every reason. We have made our decissions.
We should ALL post the reasons for our choices when a new person is inquiring about to tx or not, because it presents issues they might not have considered yet.
You do not need to justify your choice and no one is asking you to. These are choices for which we are accepting possible consequences,(those on or not on TX ).
When I make that statement, please do not TRANSLATE to meaning; only those on TX can post here.
It is only those not in tx, that choose to post with snippy remarks which will trigger an emotional response, and That is their only "contribution" that I find an issue with. NOTHING else. I will continue to have an issue with that, and it has nothing to do with their choice not to tx.
Gwithhepc; you have made a grueling decission for you and your daughter, and you have enlightened me as to what needs are been filled for you here. That is a welcome contribution.
I can't recall if you ever made snippy, flaming remarks so I have no issue with you personally. Your point is clearly expressed without the added "fire feeding" comments.
You do realize that there is a limitation for those not on tx OR hcv symptoms, in forums like this. I don't know if it is good or bad, but again, it is kind of hard for us to offer:"I am glad you have no aches and are feeling so healthy today" support when we feel like ****....I know you understand.
Hey you and I are neighbors, if you want, you and your 13yr old and I and my 14yr old can meet and see "Moving Out" or something.
Just a thought.
Be well
OHC:
I am in New York City. Thanks for keeping your website up to date. Can you provide the link again? It's been a while since I visited.
I wish I had some answers for you about insurance, but I have no idea. If I run across some information, I will send it your way.
pjxak:
Thanks for the link. I have read that debate before; it's a good one.
G
I am in New York City. Thanks for keeping your website up to date. Can you provide the link again? It's been a while since I visited.
I wish I had some answers for you about insurance, but I have no idea. If I run across some information, I will send it your way.
pjxak:
Thanks for the link. I have read that debate before; it's a good one.
G
Good luck with your insurance issues. I don't know the answer but will be watching with interest, for the responses you will surely receive.
Stay strong.
Stay strong.
Most people tx b/c they are way sick. Those who are not sick onto death don't feel the urgency. My mom and I just figured out that I may have been infected since 1967, just re-infected in '79 and '85.
If I had known I had hep c when I was 1st infected, nevermind the subsequence re-infections, I can guarrente I would have made all nec lifestyle changes and would not be ESLD-tx or no tx.
And my life would have played out radically differently.
B/I will say this, people who don't tx will never know true health, so will never get everything out of life. It will effect you as it infects you!!!
If I had known I had hep c when I was 1st infected, nevermind the subsequence re-infections, I can guarrente I would have made all nec lifestyle changes and would not be ESLD-tx or no tx.
And my life would have played out radically differently.
B/I will say this, people who don't tx will never know true health, so will never get everything out of life. It will effect you as it infects you!!!
In the interest of presenting both points of view from the medical experts, please check out this article on the debate about when to treat.
http://www.medicalcrossfire.com/debate_archive/2002/Feb02/mc02-hep.pdf
http://www.medicalcrossfire.com/debate_archive/2002/Feb02/mc02-hep.pdf
Hate to butt in on a thread but I am gonna anyways....
Last year I got approved for life insurance in Feb. In June I was diagnosed with Hep C by my PCP...what do I do now?? been thinking "cool I am covered!" but now if I did die from something else, and they find I had/tx for Hep C would that nil and void my insurance? I would think it would. Hummmmmm? I wanted to get a lower rate too since I quit smoking a yr ago, and they want a pee sample. I have worries they will find the peg, riba etc in the drug screening. but? ugh what to do.
thanks for any input! OHC/auggie
Last year I got approved for life insurance in Feb. In June I was diagnosed with Hep C by my PCP...what do I do now?? been thinking "cool I am covered!" but now if I did die from something else, and they find I had/tx for Hep C would that nil and void my insurance? I would think it would. Hummmmmm? I wanted to get a lower rate too since I quit smoking a yr ago, and they want a pee sample. I have worries they will find the peg, riba etc in the drug screening. but? ugh what to do.
thanks for any input! OHC/auggie
Bravo! well said gwithhepc! I have you listed on my webpage if that is okay with you, as "waiting to start" but I might try to copy your thoughts posted here and link them to your name...although I have had my troubles with linking!! I need what state you are in also if you care to let me post it.
Hepcbilly - I need your info also, what meds you are on and what week you are at. Thanks! OHC/auggie
Hepcbilly - I need your info also, what meds you are on and what week you are at. Thanks! OHC/auggie
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