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179856 tn?1333547362

Oldtimers Need The Forum Too

It was brought up again yesterday that some people believe that the forum is really only for people currently treating so I thought I would explain why it is that alot of us old timers are still here and why we need the friendship and commraderie too.
  
Aside from the fact that indeed if the old timers did not post there would be nobody here to learn from, no one to ask questions to and expect an answer that you can trust, nobody to delve deeply into studies and explain in plain old simple English what they actually mean (I can never read that scientific mumbo jumbo)...

You see treatment might seem to be the end of the world but honestly, mostly, it is just an inconvenience compared to other things in life.  You see treatment has a start date and an end date and you CAN if you are lucky beat this disease and then it is over.  For others though - they need this forum because they have already treated but it did not work and they continue on again bravely fighting for their lives. They NEED to be here often times more than a new person starting out because they know how vicious the gamble can be and they have so much more riding on it because they know what it feels like to really relapse.

Over the course of my own personal treatment the friends here became as important as the knowledge that was given. When I was in fear of losing my job because I was so ill (like when my hemo went down 6 points in only ten days), it was the folks in here that I could talk with about it - who understood exactly what that felt like and were able to relate their stories to me to calm me down and give me hope that it would get better.  People in my every day  life could not understand what it was like waiting for the Procrit to work, but the guys in here - they sure did.  When I had just finished treatment and woke up to find police banging on my door and then seeing my husband hanging dead on my front porch - it wasn't something I really wanted to talk about very much but again, the people in here let me cry and vent and never judged or were nosey - just supportive and understanding. My friends in here helped me to calm down enough so that I could help my children - my children who just watched their mother pretending she was fine for two years and pretending that treatment was really no big deal so that I could protect them from the worry that I was going to die, just like any good mother will do. But of course as hard as I tried they always thought that I would. Then their father did. So not fair. I could go on about tx bad luck and post tx bad luck all day but you get the gist.

The forum also gave me a place where I could feel useful during the dark times. A place where I could give back what I had received. Where I could feel that I was helping someone else walk through the treacherous jungle that treatment really seems to be when you are new.

So why are we oldtimers still in need of this place?  Because as horrible as treatment might seem to be at the time - you can put it into a box and move on but life continues onwards.  Post treatment illness can be more devastating than the treatment itself. Who if not the people in here understand what that is like?

So forget all about the fact that we come in here to help - we do. But there is so much more.

I hope this might bring some understanding to the situation and we don't ever have to hear that we're not as important as people currently on treatment.  We are.

Debby
85 Responses
92903 tn?1309904711
"Some oldies are like fine wine"

Yeah - we do better when corked.
Avatar universal
To me your more important than everyone else.
I'm still in the waiting stage, waiting for tests, waiting to find out if I do in deed have cirrhosis, which could change the whole ball game.
If it wasn't for people like yourself, Bill. Trin, Hector, etc. I would be lost.
Some people that are going through tx now are understandable feeling like crap, but you guys have been there, for some it worked, for some it didn't but the knowledge you have to share is priceless.(Like the credit card commercial, huh)

One grateful person
Dj
179856 tn?1333547362
Oh you are so sweet - I am so glad you posted honestly I was feeling pretty bad for us oldies yesterday (I guess everybody feels that way sometimes) but some of the people are SO incredible I just hate to feel that anyone wouldn't appreciate the things that a Bill for example do to help. I'm sure he has a life outside of hepatitis and to feel like all the hard work isn't as valuable as it is....well that just sucked (pardon my french there ;)
Avatar universal
Great thread Debby and so true, I don't know
what I would have done without your support and that
of others who mean the world to me.  
I thank all the old timers
Avatar universal
I am profoundly grateful for the advice and support I have received from you "old timers".  I would not have the courage to continue without you.  
148588 tn?1465778809
I was one year post-tx when I was diagnosed with steatosis/NAFLD. I had never heard of it before, let alone known that I was more prone to it due to having been geno 3. Similarly so with my dxs of insulin resistance and diabetes. This board and others like it have been a huge resource and the people both SVR and still fighting the disease have provided more help with my health than my doctors and the 'health care system'.
Plus, who else is going to understand when I say my PCP decided at 7 years post-tx I need another PCR - and they skrew up two blood draws and want me to come in to do a third.

[email protected]#$%
Avatar universal
At first I was going to wait for the new drugs to come out, when ever that maybe.
Then my Dr found the catscan from 2 yrs. ago that somehow got lost in the medical file world.
Nodularities in the liver, not good.
When I posted this it was the "old timers" who posted right away informing me what to expect, what could happen, from the best circumstances to the worst, all because you have been through it.
Again,
You guys rock.

Dj
Avatar universal
Wonderful post Debby. There IS so much more to this disease than just dealing with the acute phase of treatment.

Trinity
1225178 tn?1318980604
I can't believe anybody said this forum was only for people who are treating. How would I have known how important it is to drink water if it wasn't for you? I wouldn't have known what to ask my doctor at my first appointment, or to keep my labs... or anything that the doctors didn't tell me, and that would have left a huge void... Heck, I wouldn't have known I should get a different doctor if it wasn't for Trinity.

I'm hoping you just misunderstood the post you read, and nobody is silly enough to think we don't need the voices of experience around here.
163305 tn?1333668571
If this forum was only for newbies, who'd learn anything?
We share our experience.

Its important for all of us to remember how emotional and out of sorts one can get especially while on tx. I'm guessing that person was in one of those unclear states of mind.

This forum was such a great help while I was doing tx. I wasn't up to driving to a support meeting in town yet I could come here anytime of day or night.
Assistance and support came from people doing tx at the same time as I, but even more so from those who'd been there. I even found my wonderful doctor through this forum.

Thankyou everyone for your experiences enrich and educate.
OH
Avatar universal
This board saved my life. I seriously doubt that I would be alive today had I not stumbled onto MedHelp. That's the simple truth.
Mike
751342 tn?1534360021
Great thread, Deb! I have just about recovered from my horrible experience with tx, and only stop by here once in awhile as my life is good again. I hope I never have to treat again (I did have a choice the first time, one of the lucky ones with little damage), but I have continued to learn from this site. Increased my coffee intake because coffee is good for the liver (and hey, it boosts the metabolism, too!). Learned about that on here, and that is just the tip of the iceberg of what I have learned on this site. Go, old timers!
Avatar universal
Diane you have me confused.  Your post is startling in light of the fact that yesterday you stated to NYGirl and me:

"I was speaking for all of us who are in the middle of tx NOW, and feeling the effects today... not remembering them from years ago.  Yes, WE are the ones that need validating. I imagine you needed it when you were doing tx too. If you want to validate cancer patients, go to a cancer site. I bet you would find people complaining there too, because that is what a forum is for."

I know you have complained of brain fog, but your statement on this thread is completely at odds with your posts where you claim that the board and all respect and validation is reserved for those who are treating now.

You insist that this is a "Support Forum" but if you will carefully read the forum description you will see that it states this is a forum for discussion.  In a discussion, when someone disagrees with you, it is not an invalidation of your feelings, it is a person exercising her god-given right to her opinion.

People are not just going to agree with your misstatements, even though you are on treatment.  We aspire to accuracy here.  It is important that we not let misinfromation go unchallenged.  You came here for information - how would it be if people had given you wrong information and we all sat back and let it stand just to spare someone's feelings?  Would that be alright with you?

If someone like your son or daughter comes on here to find out what is going on with their mom, do you really want them to read that this is like cancer chemo?  Do you want your children worrying that you have a disease as serious and deadly as cancer?  I know it sounds really dramatic and that you are feeling weak and sick, but really!  Do you want that kind of fear instilled in your children?  Or other people's children?

Please think about it - we're not here to have a pity party.  We are here to discuss and to learn.

Trinity

548668 tn?1394187222
You're the best Deb;  I simply wouldn't have managed tx without you and others showing me the way and giving me advice to pass onto my family, and strategies to go to my doctors with.    I try to pay it forward in my daily life which could have been so very very different.
Avatar universal
You maybe an old timer here ny-gal,but you are young at heart.Are you taking up book writing in your spare time?
751342 tn?1534360021
She should, Rocker, she should indeed! (and ditto on young at heart : )  )
Avatar universal
I appreciate the medical info, advice & support from all those that have responded to me regardless as to how long they have been on MedHelp.I view everyone equally here. It takes a village.
Avatar universal
Always good to see you hawk !
you too Kristina and annie :)
482473 tn?1215475747
Member since 2007 and I dont even have Hep C but I LOVE LOVE LOVE this forum.
I am my hubbys caretaker. He has Gyno type1, stage 2-3, grade 2-3 and went thru 2 Interferon/Riba treatments in 2007 & 08 plus a stint in Mexico with alternatives and has not gotten cured. Were one of the hopeful couples waiting for the Gyno1 cure to surface maybe late 2011 or 2012. Until then, its work, lots of laughter, love, no stress, good organic food, vitamins, huge since of humor and prayer that's keeping him/us going.
I get support, untouchable knowledge, updates, to which I share with my hubby and his doctor. Ive been able to learn from and share the "caregivers" perspective with "newbies" on organic diets, creams for breakouts, side effects, vitamins and a slew of other tidbits we can only find on this wonderful forum site. This forum gives us hope, information, laughter, education and a shared understanding from all kinds of people at all kinds of different stages in this process.
Were here for the long haul. Before and after my hubbys cured. This is "familia".
And I thank all those who share their invaluable info with me.
Newbee...Oldbee....were all HepCbees!
Be good to yourself!  
Avatar universal
I wouldn't have known how to cope if it weren't for you guys. My doctor dispensed the meds but none of them told me anything about how to deal with all those mental and physical side effects.  
707563 tn?1587576687
This is a general post, not a personal-issue post.  Please, no personal posts about anyone in particular, named or un-named.

Emily
Avatar universal
uh?
Avatar universal
Reminds me of a Robert Munsch tune called I Like Sandwiches.  I'll substitute "Oldtimers" for "Sandwiches".

I like Oldtimers, I think they're mighty fine.
I like Oldtimers, I like them all the time.
Oldtimers for dinner, Oldtimers for lunch,
If I had a hundred Oldtimers, I'd have them all at once

Okay...taking slight liberties with the wording to avoid "eating" oldtimers......
233616 tn?1312787196
I can't say how invaluable MedHelp was to my time treating.

It was the oldies who were the most help, and there aren't words to express my gratitiude enough.  I miss Jim and others that have moved on, but I'm hoping they know that their time of servanthood, long after their own ordeal was over, has had an enormously positive effect on most of us, and when crowns are passes out in heaven I'm sure theirs will shine most brightly.

"You visited Me when I was sick" Jesus once said.
Helping someone in here is the same thing really....and when we try to help, or grieve with those who grieve, we provide that same compassion.


Some oldies are like fine wine, and NY Girl you are one, you get better with age... The operative thing is to realize not every person who gets this disease already has their eternity in mind and is settled in a peaceful place.

Let me say emphatically, I love you guys!!!!!!!!

I love old timers, there are a dozen I'd love to have as house guests...

The way most folks feel on any board is they love it when people are helpful, and they love it when people have concern, and correct them as well, as long as it is done lovingly...

We are all humans who struggle..I think this disease brings out the best and the worst in all of us. Some are able to overcome, some struggle with long unresolved issues, and these come forward in their interactions be they oldies or newbies.  
As hard as I try I notice at times what I say is taken incorrectly and part of the issue is that being a matter of fact person can sometimes come across as sharp. Hopefully we can all realize and put ourselves in the shoes of the receivers. I’d love to see that happening, where everyone thinks, "if I got sent this how would I feel."
What I have noticed is that sometimes it's hard to know how fragile folks can be...
and I think some could stand to work on their delivery so as not to offend...
the only reason I think something was said about the oldies is because a couple of members have forgotten how to say things the way they would say them if God was in the room.

What I would like to see is a return to civility.  When I first joined this board, that was for the most part the norm, and many letters I have received have remarked on that fact, and the fact that in other forums rancor was much more prevalent, which made MedHelp a bastion of respite and separated it from all the rest...and that was most refreshing.
Folks newly diagnosed and/or treating need tenderness and folks with Riba rage need to recognize their suffering is effecting their speech patterns….it’s a hard path to walk well but given time, and a little self evaluation I think we all should strive for the balance you have shown.

You’ve never shown rancor, you aren’t dismissive, you don’t insult.
If anyone ever said you did, I'd dispute that, and say they really don't know your heart or your great concern.
What I’ve been doing is to pray for those in here that have those tendencies to offend as they give us all a bad name, and I don't want to see people turn away in sorrow, frustration, wounded by anything we might say, and I know you share this view.

What we most need to remember is that all people who come in here have worth, even the ones who may give their fellows a bad name, even those who may be trying treatments we don’t subscribe to.

So don’t let it worry you what was said. I say we should reason with all folks, and not try to make anyone feel stupid or dumb, ever…a couple people have not learned how to do this yet, and they especially are in my prayers....REALLY they need prayer.

Here’s hoping that all will subscribe to the ideal of typing to others what we wouldn't not mind having had typed to us.

Aside from that
For my part, those who persist in attacks are those I rarely converse with, I try not to argue with them, or respond to any of their posts, hoping that sometimes perhaps my silence might speak louder than any words.….and if we all began this practice, soon the offenders would have no one left to converse with, and they might reevaluate their approach and develop some gentility…that is my hope and prayer.

Stay well my friend, I'm sure those remarks were not aimed at you in any case.

mb
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