Re: Passing the whine & cheese back to Don...>>>>>>>>>>>>>>

[Guest guest]

if the numbers bother you then don't ask. when i learned i had genotype

2 i almost did a jig. i've turned my healthcare for my hep c over to

those that know what the numbers mean and i just do what they say. i

take my 4 pills a day and my injection on friday afternoon and go for

my follow ups and blood test. so far they tell me things are going fine

and i'm just happy with that.

[Guest guest]

- Thanks Bob. I've always been a curious person by nature and have

always wanted to know what, when, where and why. Well I pretty much

know the when, the where and the why I got this disease and now I'm

just going to devote more time to learning what I can do AUNATURALE to

take the best care of me I can. I read the numbers they gave me and

compared them to previous ones...BUT they in themselves are just

numbers. They didn't do another viral load and that's fine with me. IF

& WHEN I start completely falling apart from the HC then I will start

WHINING more. I mean it's not like I don't have plenty of other things

to whine about. I usually pencil in a couple of hours for it each

day...LOL--How is your treatment going? You sound very level headed

about it. As I've said many times before I admire all of you for

trudging thru that H@ & ^. Best Wishes! In

Hepatitis_C_Central , " Bob " wrote:

>

> if the numbers bother you then don't ask. when i learned i had

genotype

> 2 i almost did a jig

>

[Guest guest]

I agree.. sometimes the numbers can drive ya nuts,, and when you're not on treatment, they really don't mean anything.. they vary like crazy..

Subject: Re: Passing the whine & cheese back to Don...>>>>>>>>>>>>>>To: Hepatitis_C_Central Date: Thursday, December 4, 2008, 10:49 PM

if the numbers bother you then don't ask. when i learned i had genotype 2 i almost did a jig. i've turned my healthcare for my hep c over to those that know what the numbers mean and i just do what they say. i take my 4 pills a day and my injection on friday afternoon and go for my follow ups and blood test. so far they tell me things are going fine and i'm just happy with that.

[Guest guest]

thanx for asking about my treatment. i'm a very curious person too and

i do look at the numbers but all and all i'm pretty healthy to begin

with. my blood pressure is under control and my alt numbers are normal

for the first time in years but i am now borderline anemic but i was

told to expect that. i guess they might give me vitimins or something

but i'm not going to worry about it. the good side effect has been i've

lost my appitite and have lost 8 pounds. i've been eating fruit and

cereal so i'm hoping to come out of this a lot better then i started.

sorry for rambling but you asked.

[Guest guest]

hey Bob

I have been eating tons of fruit and cereal too. I just cant seem to get enough. But lately Ive been eating like everything to excess. Ive always been a one a day meal person. Now its like 5+ huje meals, and not gaining a pound. I feel pretty good too. My hep c is keeping quiet mostly. I think the whine and cheese are doing me some good too. lol

love

don in kansas

Subject: Re: Passing the whine & cheese back to Don...>>>>>>>>>>>>>>To: Hepatitis_C_Central Date: Friday, December 5, 2008, 9:21 PM

thanx for asking about my treatment. i'm a very curious person too and i do look at the numbers but all and all i'm pretty healthy to begin with. my blood pressure is under control and my alt numbers are normal for the first time in years but i am now borderline anemic but i was told to expect that. i guess they might give me vitimins or something but i'm not going to worry about it. the good side effect has been i've lost my appitite and have lost 8 pounds. i've been eating fruit and cereal so i'm hoping to come out of this a lot better then i started.sorry for rambling but you asked.

[Guest guest]

As of now I don't think I will ever do treatment but am always

interested in how others are doing because I can't say for certain that

if I was at death's door that I wouldn't give it a thought. I always

wonder if most people had started having serious Hep C related problems

BEFORE starting treatment and how many were basically well until AFTER

they started treatment. I have weird food cravings and sometimes wonder

if it's anything to do with Hep C. For a couple of weeks I couldn't get

enough of greens & cornbread ( practically nothing else ) and then it

was potato chips & ice cream. Anyway, you sound pretty stoic so I doubt

you will be needing any cheese with your whine...Debbie

>

> thanx for asking about my treatment. i'm a very curious person too

and

>

>

[Guest guest]

well debbie, sometimes its better to do tx before you get to that 'deaths door' place,, sometimes once you're that far gone, your body cannot tolerate tx and then its too late,,

I was stage 3-4 with early cirrhosis and so I FELT LIKE I had to treat.. I did and I was successful, I know , I was very lucky.. but I always wonder if I had treated earlier would I be this disabled? I dunno,, guess its a crap shoot,, but we do understand if you are not going to treat.. I know several others who feel the same way and are just working hard on taking good care of themselves and living their lives..

hugs,

jax>> thanx for asking about my treatment. i'm

a very curious person too and > >

[Guest guest]

I never wanted to do treatment, and I never did. Then my liver

failed, and I was lucky enough to get a transplant. After that, of

course, I had to treat, which I am doing now. When I got to the

point that I didn't know if I would live long enough to get a liver

to save my life, I wished that I would have done treatment a long

time ago. My fear of the side effects stopped me from treating long

ago. I should have done treatment before I ever had any damage to my

liver but I didn't want to, and I thought my liver would last

forever. There's no looking back now, but that is how things went

for me.

Penny

> >

> > thanx for asking about my treatment. i'm a very curious person

too

> and

> >

> >

>

[Guest guest]

-Jackie, I don't know the health state of most on here. I'm sorry that

you must be so ill. Did the treatment help or did it contribute to more

problems? I know that sometimes we think we know for sure what we would

do in a given situation but I've learned one thing in life to Never Say

Never. I do wish you the best...Debbie-- In

Hepatitis_C_Central , Jackie on

wrote:

>

> well debbie, sometimes its better to do tx before you get to

that 'deaths door' place,, sometimes once you're that far gone, your

body cannot tolerate tx and then its too late,,

> I was stage 3-4 with early cirrhosis and so I FELT LIKE I had to

treat.. I did and I was successful, I know , I was very lucky.. but I

always wonder if I had treated earlier would I be this disabled?

> >

> >

>

[Guest guest]

Thank you Penny for sharing your story,, we ALL are scared of treatment.. I KNOW I WAS!

but I didnt want to die either and after only having one year with a wonderful man that I also didnt want to leave,, I did treatment..

Subject: Re: Passing the whine & cheese back to Don...>>>>>>>>>>>>>>To: Hepatitis_C_Central Date: Friday, December 5, 2008, 10:19 PM

I never wanted to do treatment, and I never did. Then my liver failed, and I was lucky enough to get a transplant. After that, of course, I had to treat, which I am doing now. When I got to the point that I didn't know if I would live long enough to get a liver to save my life, I wished that I would have done treatment a long time ago. My fear of the side effects stopped me from treating long ago. I should have done treatment before I ever had any damage to my liver but I didn't want to, and I thought my liver would last forever. There's no looking back now, but that is how things went for me.Penny > >> > thanx for asking about my treatment. i'm a very curious person too > and > > > >>

[Guest guest]

Ok this is the 3rd attempt I've made to answer this but my laptop has a mind of its own sometimes and sends before Im ready and sometimes deletes stuff so IM gonna try again to answer your question..

I believe that treatment caused a lot of damage to me. I know that I had fibro as a child just as IM sure my daughter has it as well. But I worked 24 hours on the ambulance and sometimes I worked 48 hours on, then on my off time, I worked in the salon doing hair and nails and taught 2 four hour classes at the college in the evenings. I was very busy as you can see and I handled it all quite well. At one ambulance service I worked for, I was an FTO

(field training officer) and I trained many of the new paramedics, then when I left the little service I started at and went to AMR, I was a preceptor for new soon to be paramedics precepting them during their internship. I also had a family too.. I had only fatigue, joint and muscle aches prior to treatment.

AFter treatment now, I live on morphine twice a day (timed released) so I take a daily dose of 120 mg of it and it doesnt work anylonger so I will see the pain doc who handles all the hospice cases here where I live on tues and Im hoping he can help me without having to up my dose of morphine. I also have to take provigil because of the sedating effects of the morphine, I'd never be out of bed without it.. I've developed sarcoidosis in my eye which has had two surgeries to remove the sarcoid membrane.. when they did the second surgery, they went ahead and replaced my lens as the treatment caused cataracts as well.. I still have one in my other eye but so far I've not had to have it replaced. But I still have some sort of inflammation in my body that causes this body aches that are just almost enough to make me go nuts, lol.. my sed rate and RA factors are elevated as is my c-reactive protein. No one has been able to figure it

out so far.. I believe that tx also wiped my thyroid out too but my tests come back in the low normal range, but I have very dry skin and hair, Im cold and heat intolerant and my body temp in the am is less than 97 degrees.. my doc who is a DO who I thought would be interested in alternative care as well as nutrtion does not believe in anything she cannot rx that is approved by the FDA... She finally has agreed to send me to an endocrinologist and Im waiting for that.. 3 months now,, she was going to send me to another rheumatologist but that never happened.. She has her own family issues and is going through a divorce and I think she is planning to move south but keep her office open with PA's.. we have such a huge shortage of docs up where I live that I just dont know what I'll do when she's gone,, maybe the pain doc can suggest one for me when I see him,, or maybe he can take over,,, I dont know..

Since IM in calif, Im in a medicinal MJ state and I do have my card for that, I make tea with it occasionally and it helps with my anxiety over all of this but doesnt really do much for the pain other than make me not pay attention to it as much,, guess that is good,,

but all in all, the virus is in remission, so I DO count my blessings...

well I hope I havent discouraged anyone from doing tx because IM not alone in this but I do know several who have treated and gotten their lives back.. Im just not one of them..

love to all

jax>> well debbie, sometimes its better to do tx before you get to that 'deaths door' place,, sometimes once you're that far gone, your body cannot tolerate tx and then its too late,, > I was stage 3-4 with early cirrhosis and so I FELT LIKE I had to treat.. I did and I was successful, I know , I was very lucky.. but I always wonder if I had treated earlier would I be this disabled?> >

> >>

[Guest guest]

Jackie

I am so sorry to hear your story. I had no idea you were so sick. I wish I could do something to help you.

I hope you regain your health, and know that me, and others are thinking and praying for you. Youve got lots of good energy headed your way.

I, personally am amazed that you hold it together so well. You are an amazing person.

love

don in kansas>> well debbie, sometimes its better to do tx before you get to that 'deaths door' place,, sometimes once you're that far gone, your body cannot tolerate tx and then its too late,, > I was stage 3-4 with early cirrhosis and so I FELT LIKE I had to treat.. I did and I was successful, I know , I was very lucky.. but I always wonder if I had treated earlier would I be this disabled?> >

> >>

[Guest guest]

What a story you have. I had no idea you are always so upbeat and knowledgeable. I am here if you need me.

>> well debbie, sometimes its better to do tx before you get to that 'deaths door' place,, sometimes once you're that far gone, your body cannot tolerate tx and then its too late,, > I was stage 3-4 with early cirrhosis and so I FELT LIKE I had to treat.. I did and I was successful, I know , I was very lucky.. but I always wonder if I had treated earlier would I be this disabled?> >

> >>

[Guest guest]

thank you linda.. I try not to let my personal issues affect how I come across here, sometimes I do well with it and other times I fail horribly,,lol.. I believe in treatment when you need to but I also believe that those who've had this virus for 30 plus years and have little to no damage, well I wouldnt even begin to suggest they do tx because of what its done to me,, IF I hadnt had so much damage, Im not so sure that I'd have done tx then, but you know hindsight is always 20-20,,

My background is also the reason that sometime I KNOW Im coming across as overbearing but its only because after being on this board as well as 8-9 other forums over the years, I've seen so much and when I see a doc giving bad info or bad treatment, I FEEL a responsibility to at least bring it to light so that our member can at least question their doc.. I dont mean ever to come across as a knowitall because IM not.. and so much has changed in regards to treatment even since I started.. but I try to keep up on things and as I said, when I see docs rx'ing things like cynbalta when it really shouldnt be given to those with any liver disease, it drives me nuts,, or when a doc who says at first that he will treat the side effects and then refuses to do so and threatenes the person with stopping their treatment if they complain, well it really goes straight to my gut and it makes me angry!

anyway, thanks for the offer, and thanks for staying with our group.. I really do believe we are the best on the net..

hugs

jax

[Guest guest]

thank you Don.. I really DO try and sometimes even I get my panties in a wad..lol.. I just love this group so much and it hurts me when I see people either not getting the treatment they need or when they get stuff that they shouldnt get and it can hurt them and make their treatment ineffective..

You're a great person too Don and IM glad you found us.. all we can do is to keep putting one foot in front of the other.. what other choice do we have?

I know that IM so very lucky in that I DO have a family who is totally supportive, like Liz does and so many others, janet, sheena etc.. it breaks my heart to see anyone trying to deal with this alone,, and if you lived closer Don, we'd be there to help you too!

thanks again Don!

hugs,

jax>> well debbie, sometimes its better to do tx before you get to that 'deaths door' place,, sometimes once you're that far gone, your body cannot tolerate tx and then its too late,, > I was stage 3-4 with early cirrhosis and so I FELT LIKE I had to treat.. I did and I was successful, I know , I was very lucky.. but I always wonder if I had treated earlier would I be this disabled?> >

> >>

[Guest guest]

Jackie, I want to thank you for describing what it was like before

and after treatment for you...because it is EXACTLY how my story

went...all the way down to the blood test results, your doctor's

attitude and even the laptop problems you have....

I'm just glad you described it so well because I didn't have the

energy to do it (LOL).

Provigil would work for a little while then it would actually make me

sleepier unless I took a break from it for a while.

I was on the duragesic patch, then oxycontin and now I've switched to

methadone (since BCBS PartD decided not to pay for the generic oxy

anymore) which was actually a g-dsend! The difference in pain relief

was INCREDIBLE!

Anyhow...are we sisters?

[Guest guest]

Hi jennifer

well IM glad that my story was helpful to someone altho IM sorry that you have endured what I've endured.. I wouldnt wish that on my worst enemy,, well maybe my ex ,, not really, but you know what I mean.

Tomorrow I will see the pain doc and will talk with him about what else I could use because the morphine is no longer working very well.. When it worked its best, I could get my pain level down to maybe a 4 on that 1 to 10 pain scale, now I cannot get it below a 6 and I simply do not want to take more pain meds and I certainly cannot 'live' in the hot tub which is the only pain I truely feel pain free. I will ask him about the methadone and see what he has to say. He is the head of hospice here where I live and is a great and very compassionate doc. My pcp doc sent me to him when I wanted to get off norco and he helped me to get things lined up for the morphine ( oromorph) is what I take 60 mg timed released twice a day ( yes that means every 12 hours).. I set my watch alarm so that if I happen to be sleeping or actually doing something that I will take it on time.. Mostly for the past 2 + years, I have taken it on time.. But

morphine totally paralyses my bowels and that has been a huge problem and I simply cannot keep taking senacot-S , it causes cramping and that I dont like either, so I just take a softener and then every other day I take MOM to fix that problem,, but I do not want to keep having to take that stuff , the softener and mom if the pain relief is not there. So I will ask him about maybe something else tomorrow.. I feel like my quality of life is gone completely and if not for this laptop and the friends I've made here, I'd be lost.. completely..

yep, we're sisters... so are you SVR too?

jax

Subject: Re: Passing the whine & cheese back to Don...>>>>>>>>>>>>>>To: Hepatitis_C_Central Date: Monday, December 8, 2008, 11:20 AM

Jackie, I want to thank you for describing what it was like beforeand after treatment for you...because it is EXACTLY how my storywent...all the way down to the blood test results, your doctor'sattitude and even the laptop problems you have....I'm just glad you described it so well because I didn't have theenergy to do it (LOL).Provigil would work for a little while then it would actually make mesleepier unless I took a break from it for a while.I was on the duragesic patch, then oxycontin and now I've switched tomethadone (since BCBS PartD decided not to pay for the generic oxyanymore) which was actually a g-dsend! The difference in pain reliefwas INCREDIBLE! Anyhow...are we sisters?