Re: Welcome New Member Pamela!

[Guest guest]

Whoops... I forgot to sign this!Hugs,TeriOn Fri, Feb 25, 2011 at 3:57 PM, Theresa Gottlieb <theresagottlieb@...> wrote:

Pamela,First of all, WELCOME to the group.  I'm glad you found us.  This is a safe place, you have found a soft spot to land.  The group is comprised of people in all different stages of their walk with Hep C.  From newly diagnosed, to awaiting treatment, on treatment, some that have treated and not responded or treated and had treatment stopped for whatever reason.. There are people here who have chosen not to treat and some of us who have treated and cured.  

To answer your questions.. YES to everything.I was diagnosed in 2004 with type 1A.  I went thru treatment from 2005 to 2006 for 48 weeks on Interferon and Ribavirin.  I went thru 48 weeks of sheer and utter HELL.  I had every single side effect that the two drugs had to offer.  Lucky me.   I lost my hair, 100 + pounds, and somewhere along the way my sanity.  I did also lose the hep c virus.  I cleared and am now considered cured.  I am a success story... if you want to call it that.  My hep c is gone.  The aftermath of the treatment still lingers on for me.  I understand exactly where you are coming from on this... I am right there with you.

I applied for Social Security Disability while I was still on treatment... had to as I had short term and long term disability thru my employer and it was a condition of the long term disability that I apply.  I was, as usual, turned down the first two times.  On the third time, in front of a judge, I was approved on the spot.  Immediate decision with back benefits paid out within 30 days.  It is pretty automatic that you are turned down for SSD on the first 2 tries.  They don't even take you seriously until round 3.  

My doctor is a Liver Specialist and he does say that it can take years to get rid of the effects from the Interferon and that some people never get all the way better.  For me it was a trade off.  I was told without treatment I would be dead in less than a year.  Dead or a life that is different than it was.  I'll take alive any day. 

Currently I am unable to work.  I have Fibromyalgia that set in during treatment sometime but wasn't diagnosed until last year.  The brain fog still exists although it is better than it was, it's still not good enough to let me return to a normal job.  Pain..  I live with it.  

Hopefully, if nothing else, you will find that you are not alone in what you are going thru..  Ask any question you'd like..  The only dumb question is the one  you didn't ask.  

I'm sure everyone will be chiming in soon!On Fri, Feb 25, 2011 at 2:34 PM, Pamela <pamaranth@...> wrote:

 

Sorry this took so long...Gmail won't let me reply, so I had to figure out how to go to the group page.

I'm HERE. (New to the group.)

Was diagnosed around 1995 with genotype 3a Went on Interferon for a year with every side effect imaginable from 1996-97. I'd researched and heard about Ribaviron, but the Stanford doctors wouldn't even discuss it so I went through a year of hell with a 17% chance of a cure vs the almost 90% it seems I would have had (with my genotype, viral load, etc.)

I've never been the same since the Interferon physically, emotionally or mentally. Admittedly, I have enough other reasons to be a wreck, but I know, and have heard of, other patients who have never fully recovered from chemo treatments (whether from Interferon or any form of chemo-therapy.)

Has anybody seen a doctor who admits that Interferon can have lasting " after-effects? "

Also, has anybody else had to fight SS Disability?

>

> If you are reading this I want you to RESPOND! EVERYBODY! Let us know that you are here and okay! EVERYONE!

>

> Thank you....

>

> Hugs,

> Teri

>

[Guest guest]

Pamela,First of all, WELCOME to the group.  I'm glad you found us.  This is a safe place, you have found a soft spot to land.  The group is comprised of people in all different stages of their walk with Hep C.  From newly diagnosed, to awaiting treatment, on treatment, some that have treated and not responded or treated and had treatment stopped for whatever reason.. There are people here who have chosen not to treat and some of us who have treated and cured.  

To answer your questions.. YES to everything.I was diagnosed in 2004 with type 1A.  I went thru treatment from 2005 to 2006 for 48 weeks on Interferon and Ribavirin.  I went thru 48 weeks of sheer and utter HELL.  I had every single side effect that the two drugs had to offer.  Lucky me.   I lost my hair, 100 + pounds, and somewhere along the way my sanity.  I did also lose the hep c virus.  I cleared and am now considered cured.  I am a success story... if you want to call it that.  My hep c is gone.  The aftermath of the treatment still lingers on for me.  I understand exactly where you are coming from on this... I am right there with you.

I applied for Social Security Disability while I was still on treatment... had to as I had short term and long term disability thru my employer and it was a condition of the long term disability that I apply.  I was, as usual, turned down the first two times.  On the third time, in front of a judge, I was approved on the spot.  Immediate decision with back benefits paid out within 30 days.  It is pretty automatic that you are turned down for SSD on the first 2 tries.  They don't even take you seriously until round 3.  

My doctor is a Liver Specialist and he does say that it can take years to get rid of the effects from the Interferon and that some people never get all the way better.  For me it was a trade off.  I was told without treatment I would be dead in less than a year.  Dead or a life that is different than it was.  I'll take alive any day. 

Currently I am unable to work.  I have Fibromyalgia that set in during treatment sometime but wasn't diagnosed until last year.  The brain fog still exists although it is better than it was, it's still not good enough to let me return to a normal job.  Pain..  I live with it.  

Hopefully, if nothing else, you will find that you are not alone in what you are going thru..  Ask any question you'd like..  The only dumb question is the one  you didn't ask.  

I'm sure everyone will be chiming in soon!On Fri, Feb 25, 2011 at 2:34 PM, Pamela <pamaranth@...> wrote:

 

Sorry this took so long...Gmail won't let me reply, so I had to figure out how to go to the group page.

I'm HERE. (New to the group.)

Was diagnosed around 1995 with genotype 3a Went on Interferon for a year with every side effect imaginable from 1996-97. I'd researched and heard about Ribaviron, but the Stanford doctors wouldn't even discuss it so I went through a year of hell with a 17% chance of a cure vs the almost 90% it seems I would have had (with my genotype, viral load, etc.)

I've never been the same since the Interferon physically, emotionally or mentally. Admittedly, I have enough other reasons to be a wreck, but I know, and have heard of, other patients who have never fully recovered from chemo treatments (whether from Interferon or any form of chemo-therapy.)

Has anybody seen a doctor who admits that Interferon can have lasting " after-effects? "

Also, has anybody else had to fight SS Disability?

>

> If you are reading this I want you to RESPOND! EVERYBODY! Let us know that you are here and okay! EVERYONE!

>

> Thank you....

>

> Hugs,

> Teri

>