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Thanksgiving, Medhelp and perspective
I'm self employed and have a number of steady clients that over the years I have come to be friends with. Very recently, I did some work for a couple and one of them did not seem to be their normal self. In the course of my work, an avenue came up where we all sat down and talked for a few minutes and then I returned to my work. It lingered in my mind after our meeting. I reflected that we were indeed friends or had become friend over the past 4-5 years I had known them and I could tell that something was amiss.
I got my answer a few days ago; I was informed by the spouse that the other had cancer, had received an operation, and then a second operation to correct the botched first one and had just taken the first chemotherapy treatment. The prognosis looked very good, but one never knows. I started pondering if I could help in some way. In the course of my thought on the subject I *remembered* a few things. I may not be right in my assumptions but I thought that I would share them with you.
I have lost a few friends over the years to cancer. I also lost another close customer friend to an auto-immune lung issue just one year ago. In that case in months it seemed they went to somewhat normal to simply gone. Their lungs just stopped working. In what seemed to be 8-12 weeks her lungs were finally destroyed though auto immune attack.
I have shared a few times with people about going on line to forums such as this and have referred people but...... I'm not sure that the same caliber of support and knowledge is as common as one finds in the HCV community. One might find it in something like the HIV community where there is a large community of people who are in a fight for health that spans decades.
I don't think I can wisely talk about other forums but my friends did not have the same kind of experience which I have had. Visit the cancer forum here or a few other places. It just doesn't seem as robust. And that is why I write today..... to give members of this forum a chance to think about how "fortunate" we are.
There are a lot of members here that have a lot of history with the disease, vast knowledge of the disease and they share that in their numerous posts and replies. This forum is a prolific producer of posts. There are numerous posts on all aspects of the disease and treatment. The fact that our disease, a virus moves rather slowly allows many of us to wait.... to compare notes, to educate ourselves a bit before we decide on our course of action. To some extent, over a period of time the forum produces people who can write about these issues.
Our disease may allow us the incredible luxury of having some time to read and decide. We are granted a large forum and a number of other excellent HCV forums, and a number of people whom are very up to date on the disease, it's treatment and all sort of other peripheral information; anything about the disease and lots of information on the extra-hepatic stuff that may also come in the package. I'm not certain that it exists in all other forums and in all other types of diseases and infirmities.
When people work on boards for years they also often become more fluent in communication. They may also see where some things may or may not work, may be able to explain difficult to decipher things like studies or lab results to newbies, or may also be able to see though some claims, hype, or argument. Over the years I have seen some wonderful discussions here that reveal all sides of a point of view or topic.
Yes I know that things are not always idyllic at this forum. I think that may come from living so long in close quarters. : )
I just wanted to pass on the thought that in spite of the occasional squabbles...... the members here are afflicted with a tough disease, but there are many that are worse. You have a good forum, you have some excellent members with a lot of knowledge and passion for helping others. In some respects in the Hep C community we have so much more than many other communities with health infirmities.
When I think about our disease I know something; it has a cure. Not only can it be cured but there are treatments that will likely be approved next year that will probably nearly double the cure rate and in half the time. In a few more years after that we can see that dual acting anti-viral agents may also be approved that will have even higher efficacy coupled with even shorter treatment times. We have a lot to be thankful for. *Our* virus will likely be nearly completely curable soon.
I just thought that I would share this humble opinion. I know that a few friends with other medical issues did not find the type of help that many of us with HCV have found. I just thought with that with Thanksgiving so close that I would share my thoughts with you on this subject. I'm certain that my friend undergoing chemo doesn't have this type of resource or the type of support that communally you all provide. I know we all come from different places and hold differing opinions and that we don't always agree. As a whole, when all people present their opinion, their knowledge or experience and their HELP a huge amount of information and good is transmitted. It isn't always beautiful, but then neither is life.
Pat yourself on the back for helping to provide the help and community. Pat your neighbor on the back too; even the ones which you may disagree with. They, just like you, are trying to help to sus out the truth or facts on a subject. Yes, I have seen tempers flair and posts that have ranged on topics over 200 strong, or that see posts or entire threads deleted.......but...... do you know what is really sad?
It is the post made from a person with a serious problem that doesn't have a community to answer it; a few replies from people who aren't familiar with the issue, the disease, the treatment. That is a person with a problem who may face their issue without much information, or worse yet, with bad information and who may face their issue virtually alone. In that sense I think that many of us are blessed. It is still a tough and terrible disease but nobody has to go it alone in this forum or other HCV forums.
Thanks to the many here who provide to others (including the moderators and management @MH : ) )
Happy Thanksgiving. It occurs to me that I have a friend who got their liver TP on Thanksgiving several years ago.
best,
Willy
I got my answer a few days ago; I was informed by the spouse that the other had cancer, had received an operation, and then a second operation to correct the botched first one and had just taken the first chemotherapy treatment. The prognosis looked very good, but one never knows. I started pondering if I could help in some way. In the course of my thought on the subject I *remembered* a few things. I may not be right in my assumptions but I thought that I would share them with you.
I have lost a few friends over the years to cancer. I also lost another close customer friend to an auto-immune lung issue just one year ago. In that case in months it seemed they went to somewhat normal to simply gone. Their lungs just stopped working. In what seemed to be 8-12 weeks her lungs were finally destroyed though auto immune attack.
I have shared a few times with people about going on line to forums such as this and have referred people but...... I'm not sure that the same caliber of support and knowledge is as common as one finds in the HCV community. One might find it in something like the HIV community where there is a large community of people who are in a fight for health that spans decades.
I don't think I can wisely talk about other forums but my friends did not have the same kind of experience which I have had. Visit the cancer forum here or a few other places. It just doesn't seem as robust. And that is why I write today..... to give members of this forum a chance to think about how "fortunate" we are.
There are a lot of members here that have a lot of history with the disease, vast knowledge of the disease and they share that in their numerous posts and replies. This forum is a prolific producer of posts. There are numerous posts on all aspects of the disease and treatment. The fact that our disease, a virus moves rather slowly allows many of us to wait.... to compare notes, to educate ourselves a bit before we decide on our course of action. To some extent, over a period of time the forum produces people who can write about these issues.
Our disease may allow us the incredible luxury of having some time to read and decide. We are granted a large forum and a number of other excellent HCV forums, and a number of people whom are very up to date on the disease, it's treatment and all sort of other peripheral information; anything about the disease and lots of information on the extra-hepatic stuff that may also come in the package. I'm not certain that it exists in all other forums and in all other types of diseases and infirmities.
When people work on boards for years they also often become more fluent in communication. They may also see where some things may or may not work, may be able to explain difficult to decipher things like studies or lab results to newbies, or may also be able to see though some claims, hype, or argument. Over the years I have seen some wonderful discussions here that reveal all sides of a point of view or topic.
Yes I know that things are not always idyllic at this forum. I think that may come from living so long in close quarters. : )
I just wanted to pass on the thought that in spite of the occasional squabbles...... the members here are afflicted with a tough disease, but there are many that are worse. You have a good forum, you have some excellent members with a lot of knowledge and passion for helping others. In some respects in the Hep C community we have so much more than many other communities with health infirmities.
When I think about our disease I know something; it has a cure. Not only can it be cured but there are treatments that will likely be approved next year that will probably nearly double the cure rate and in half the time. In a few more years after that we can see that dual acting anti-viral agents may also be approved that will have even higher efficacy coupled with even shorter treatment times. We have a lot to be thankful for. *Our* virus will likely be nearly completely curable soon.
I just thought that I would share this humble opinion. I know that a few friends with other medical issues did not find the type of help that many of us with HCV have found. I just thought with that with Thanksgiving so close that I would share my thoughts with you on this subject. I'm certain that my friend undergoing chemo doesn't have this type of resource or the type of support that communally you all provide. I know we all come from different places and hold differing opinions and that we don't always agree. As a whole, when all people present their opinion, their knowledge or experience and their HELP a huge amount of information and good is transmitted. It isn't always beautiful, but then neither is life.
Pat yourself on the back for helping to provide the help and community. Pat your neighbor on the back too; even the ones which you may disagree with. They, just like you, are trying to help to sus out the truth or facts on a subject. Yes, I have seen tempers flair and posts that have ranged on topics over 200 strong, or that see posts or entire threads deleted.......but...... do you know what is really sad?
It is the post made from a person with a serious problem that doesn't have a community to answer it; a few replies from people who aren't familiar with the issue, the disease, the treatment. That is a person with a problem who may face their issue without much information, or worse yet, with bad information and who may face their issue virtually alone. In that sense I think that many of us are blessed. It is still a tough and terrible disease but nobody has to go it alone in this forum or other HCV forums.
Thanks to the many here who provide to others (including the moderators and management @MH : ) )
Happy Thanksgiving. It occurs to me that I have a friend who got their liver TP on Thanksgiving several years ago.
best,
Willy
As a relatively new member to the forum I would just like to say it was a pleasure to read your post. Well done,and well said. All the best..WILL
Ahhh Willy, this is why we became friends, and still remain across the miles and busy schedules. This is a wonderful post and I agree, well done.
This was my 'safe place' from the second I came here, and so much thru my tx and post issues. Ironically, I just said to a friend yesterday that I wish I had more time these days to be 'here'.
You can explain tx all day, every day to one that hasn't done it or doesn't have the disease, there is no true understanding it for them, however much they try. The best understanding I ever got anyone to.....was after they read here. Many times, I sent someone here, or sent them a thread and once they read here, they had far more insight into the entire situation. I have been on several sites, I have never gotten what I got here. I have met many here. I simply can't describe all that you people, this site brought to my life in this life changing event in my life! Many of us go back to being too busy to spend a lot of time here, but many of us also are never 'gone' for good, just too dam busy, which......we may not be able to do, if not for tx. Post issues or not, many of us could well not be here today, my next thread will define that better. I would have quit tx, beyond any doubt, had I not been here. Had I only a nurse or my Dr to get me thru this, I would have quit 5 wks in.
I am VERY thankful for all of you, even in our disagreements, tx moods, debates, each of you contributes, in so many various ways.
Thank u Willy, and my best to all here, LL
This was my 'safe place' from the second I came here, and so much thru my tx and post issues. Ironically, I just said to a friend yesterday that I wish I had more time these days to be 'here'.
You can explain tx all day, every day to one that hasn't done it or doesn't have the disease, there is no true understanding it for them, however much they try. The best understanding I ever got anyone to.....was after they read here. Many times, I sent someone here, or sent them a thread and once they read here, they had far more insight into the entire situation. I have been on several sites, I have never gotten what I got here. I have met many here. I simply can't describe all that you people, this site brought to my life in this life changing event in my life! Many of us go back to being too busy to spend a lot of time here, but many of us also are never 'gone' for good, just too dam busy, which......we may not be able to do, if not for tx. Post issues or not, many of us could well not be here today, my next thread will define that better. I would have quit tx, beyond any doubt, had I not been here. Had I only a nurse or my Dr to get me thru this, I would have quit 5 wks in.
I am VERY thankful for all of you, even in our disagreements, tx moods, debates, each of you contributes, in so many various ways.
Thank u Willy, and my best to all here, LL
I never took it that you were expressing we should be thankful it's this disease we have had to contend with over others but rather that you find the support system for this disease that we have here seems to stand out in it's robust level of support compared to what may be available to others afflicted with this disease.
The sad fact is that, for those who may not have found this particular forum, support may not be so easy to come by for persons with Hep C. I know in my group (my real live in person group) one of our newest attendees expressed we need to do a better job of letting people know we exist because they could have used the support much earlier. This is a woman who thinks she's dying because she has Hep C and she's Stage 2. Not everybody is savvy with the internet or uses the internet to make contact. Hard to believe I'm sure but there is still a number of folks out there who need the "on the ground" support and support that is relevant to where they live. Out of all the folks who have Hep C, there is only a small portion of them who have found their way to this forum and this forum may or may not meet the needs of those folks when they do arrive here. While the benefits this forum offers are considerable, it's certainly not all things to all people.
This forum was a haven for me during treatment and I know for a fact that I would not have done nearly as well with my own challenges without the knowledge and support of folks here and I'll not forget that. It would be incorrect though to assume that this forum alone means that Hep C folks in general have sufficient support. I don't say that to take away from your thankfulness. Only to say that there is plenty of work that is required to be done out there yet for folks with Hep C.
Trish
The sad fact is that, for those who may not have found this particular forum, support may not be so easy to come by for persons with Hep C. I know in my group (my real live in person group) one of our newest attendees expressed we need to do a better job of letting people know we exist because they could have used the support much earlier. This is a woman who thinks she's dying because she has Hep C and she's Stage 2. Not everybody is savvy with the internet or uses the internet to make contact. Hard to believe I'm sure but there is still a number of folks out there who need the "on the ground" support and support that is relevant to where they live. Out of all the folks who have Hep C, there is only a small portion of them who have found their way to this forum and this forum may or may not meet the needs of those folks when they do arrive here. While the benefits this forum offers are considerable, it's certainly not all things to all people.
This forum was a haven for me during treatment and I know for a fact that I would not have done nearly as well with my own challenges without the knowledge and support of folks here and I'll not forget that. It would be incorrect though to assume that this forum alone means that Hep C folks in general have sufficient support. I don't say that to take away from your thankfulness. Only to say that there is plenty of work that is required to be done out there yet for folks with Hep C.
Trish
Concise is great if you can clearly convey your intent. Otherwise, a little more verbosity is sometimes required. For myself, brevity has never been my strongpoint and I tend to use too many words in an effort to be clearly convey my meaning. That can be misinterpreted or outright fail also as it's misinterpreted at times as "ranting". Ah, the challenges of communication.
I understood you willy. I merely thought my point was interesting.
As far as me being thankful for this board I can say that I believe it saved my life. So, I'm very thankful and quite cognizant of the value that this place provided to me.
I have visited many forums here - cancer and lung cancer included. Check out liver disorders because there isn't a lot of action there either.
And - I was kind of concise and that should count for something.
Mike
As far as me being thankful for this board I can say that I believe it saved my life. So, I'm very thankful and quite cognizant of the value that this place provided to me.
I have visited many forums here - cancer and lung cancer included. Check out liver disorders because there isn't a lot of action there either.
And - I was kind of concise and that should count for something.
Mike
When i first found out I had hcv I was devastated and it was the grace of god that sent me to this place.I know if I have a question-it probably WILL be answered within minutes!!!!Not like some of the other forums where I have spent days waiting for someone to answer me.....Not only has this forum educated me on my disease but I have made friends that are in the same place that I am.I dont feel alone!!!
Orphanedhawk-you said it PERFECTLY.We all have alot to be thankful for.EACH OTHER!!!!!! cindy
Orphanedhawk-you said it PERFECTLY.We all have alot to be thankful for.EACH OTHER!!!!!! cindy
We all have so much to be thankful for, our family, friends, good food, and support on this forum.
As Willy so clearly stated, this one seems unique.
Happy Thanksgiving everybody.
As Willy so clearly stated, this one seems unique.
Happy Thanksgiving everybody.
Have a Happy T Day y'all! I will be thankful for friends and family both online and off. Stay safe!!
Thanks for the nice replies, comments and for sharing your views.
Mike, I didn't write the above post to explain why I would *choose* HCV. I wanted to give members some perspective on this disease, our TX and primarily how some of the dynamics of the above can end up affecting our forum.
I wanted to convey that in spite of the occasional tiff we might have that we should not lose sight that we have a good forum and members....... whether we always agree with them or not.
That means I'm grateful that we have you Mike. : ) ..........and many other members we know or have known from this forum over the years.
Take a look at the cancer forum, go back 5 pages or so. I was writing about my friend that had cancer...... and NOW compare it to this forum. I hope you get better understanding of the idea.
http://www.medhelp.org/forums/Cancer/show/59
or the lung cancer forum;
http://www.medhelp.org/forums/Lung-Cancer/show/14?page=2
Happy Thanksgiving
Willy
Mike, I didn't write the above post to explain why I would *choose* HCV. I wanted to give members some perspective on this disease, our TX and primarily how some of the dynamics of the above can end up affecting our forum.
I wanted to convey that in spite of the occasional tiff we might have that we should not lose sight that we have a good forum and members....... whether we always agree with them or not.
That means I'm grateful that we have you Mike. : ) ..........and many other members we know or have known from this forum over the years.
Take a look at the cancer forum, go back 5 pages or so. I was writing about my friend that had cancer...... and NOW compare it to this forum. I hope you get better understanding of the idea.
http://www.medhelp.org/forums/Cancer/show/59
or the lung cancer forum;
http://www.medhelp.org/forums/Lung-Cancer/show/14?page=2
Happy Thanksgiving
Willy
ya know, I was gonna get on here and share some things I was thankful for, but you kinda beat to to the punch Will.
Good job!!!! If I do write something, it won't surpass one iota what you said.
We have a lot to be thankful for, and this forum is certainly up there in the blessings it has bestowed.
Thank you for saying what you said, and Happy Thanksgiving!!!
Good job!!!! If I do write something, it won't surpass one iota what you said.
We have a lot to be thankful for, and this forum is certainly up there in the blessings it has bestowed.
Thank you for saying what you said, and Happy Thanksgiving!!!
There have been studies conducted and almost invariably the person will choose the chronic disease they are afflicted with if given a choice. Diabetics will choose diabetes and HCV positive patients will choose HCV, HBV will opt for HBV and cancer patients will choose cancer.
Better the devil you know than the one you don't know.
Let's all be thankful but please - don't get too carried away.
Mike
Better the devil you know than the one you don't know.
Let's all be thankful but please - don't get too carried away.
Mike
I couldn't agree more Willy! It is all relative from where you stand.
Anybody who is feeling sorry for themselves for having HCV and go to a cancer hospital and just sit in a waiting room. If you look around you will see some real suffering. People who know they time is running out. People without arms, legs, etc.due to cancer. I will take ESLD anyday.
Happy Thanksgiving!!!
hectorsf
Anybody who is feeling sorry for themselves for having HCV and go to a cancer hospital and just sit in a waiting room. If you look around you will see some real suffering. People who know they time is running out. People without arms, legs, etc.due to cancer. I will take ESLD anyday.
Happy Thanksgiving!!!
hectorsf
Ditto!!!!!!!
Since I'm on week 30 of tx, I find that being around people is a source of anxiety, but that isn't so here. If it wasn't for this forum I don't know how I would have gotten this far and still have my sanity.
We all are very blessed that we found this place. I hate to admit it but I even enjoyed the fusses... at least it let me know I was still alive.
Diane
Since I'm on week 30 of tx, I find that being around people is a source of anxiety, but that isn't so here. If it wasn't for this forum I don't know how I would have gotten this far and still have my sanity.
We all are very blessed that we found this place. I hate to admit it but I even enjoyed the fusses... at least it let me know I was still alive.
Diane
It's almost like sitting down with family and saying grace :) ... and passing the thanksgiving plates around the 'table.'
Willy 50, you're absolutely right... I visit the cancer forum often because my husband has hcv-induced hcc... but I've gotten more information here in a single day than months there (or any related GI forum). Getting the news about having hcv feels like surviving the bomb, but finding this forum IS the bomb. Thanks for putting it in words so well.
Happy thanksgiving to all. Gobble gobble!
Willy 50, you're absolutely right... I visit the cancer forum often because my husband has hcv-induced hcc... but I've gotten more information here in a single day than months there (or any related GI forum). Getting the news about having hcv feels like surviving the bomb, but finding this forum IS the bomb. Thanks for putting it in words so well.
Happy thanksgiving to all. Gobble gobble!
I think that may come from living so long in close quarters. "
Exactly what I have always thought, we fight like family but would do anything to help one another. It's kind of cool even though we aren't always 'civil' in our wars - it's something people should really understand.
Have a happy turkey day!
Exactly what I have always thought, we fight like family but would do anything to help one another. It's kind of cool even though we aren't always 'civil' in our wars - it's something people should really understand.
Have a happy turkey day!
You have a beautiful "attitude of gratitude." Thanks for sharing it and happy Thanksgiving to all at Medhelp.
Everyone remember to be sparing with the sugary stuff on Thursday so as to keep your livers happy:>) Enjoy your turkey though! Wash it down with a nice cup of black coffee.
Ev
Everyone remember to be sparing with the sugary stuff on Thursday so as to keep your livers happy:>) Enjoy your turkey though! Wash it down with a nice cup of black coffee.
Ev
My sentiments eloquently stated and I appreciate your time and Thought to do so. Yes..I've only been on the Forum for a couple of weeks, but it has already empowered me. I am forever talking about "my group."
Love to all, hang in there, and don't be shy about "friending" others.
Happy Thanksgiving, Will ...and all of us fighting the good fight. :)
Janee
Love to all, hang in there, and don't be shy about "friending" others.
Happy Thanksgiving, Will ...and all of us fighting the good fight. :)
Janee
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