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Hepatitis Social Community
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179856 tn?1333550962

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?1309908311
"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?1333550962
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?1465782409
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.

!@#$%
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