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The below is a couple of posts I pulled from another group I used to belong to. This kind of stuff scares me to death and is at least 1/2 the problem in the hep c community. This kind of ignorance about ones own disease is unacceptable. I waffle as to where to place the blame. Part of me wants to get really angry at this person for not educating themselves. The other part wanta to get real angry at doctors for not getting these people educated. One has to wonder if all 4,000,000 of us in this country got with the program a got educated and became advocates for our own disease if the face of Hep C treatment and research would not finally shift.
Phew, ok, that was my soapbox for the day, grrrrrrr..............
helo dave,
thankyou for replying to me. i will use some milkthistle too, then. i do not know what alt ast counts are. i am not science minded, and i think it all sound all so complicated.
i do have some symptoms of the virus, mostly feeling sick and real fatigue.
it is heartenning to hear that you had success with your treatment. will you stay undetected, or will it come back, i hope it doesnt. please excuse punctuation, shift keys not working on keyboard.
all the best, jan.
i dont know if i am using this right, as i have never used a chat or
similar before. (ancient me).
i have had hep c for over twenty years now, no treatment or support, i
am an ex addict. (nearly 16 years ago)
Two weeks ago, my ex partner also hep c, died, overdose i assume, the
children,3, and i feel in limbo, and i feel frustrated.
i dont want to get sick. i want to live. live a long and happy life
for my children. My strain is 1 something, and i know from a viz to
the dr. last year that "i am not at the early stages, not at the
worst, but inbetween." Not that that is telling me a lot.
What treat ment is there?
My neice is 32, in australia, and about to start interferon, as the
government says they no longer have to wait for cirrossis (cant spell,
sorry). i am pleased for her, but a bit envious too.
i dont want to wait till i get really ill to have a chance for a cure.
is there anything i can do or take to help myself get a better chance?
i am in contact with no other person with hep c on a one to one. i
feel ignorant of my illness and isolated. Anyone got suggestions? I
am 44.
Jan
Phew, ok, that was my soapbox for the day, grrrrrrr..............
helo dave,
thankyou for replying to me. i will use some milkthistle too, then. i do not know what alt ast counts are. i am not science minded, and i think it all sound all so complicated.
i do have some symptoms of the virus, mostly feeling sick and real fatigue.
it is heartenning to hear that you had success with your treatment. will you stay undetected, or will it come back, i hope it doesnt. please excuse punctuation, shift keys not working on keyboard.
all the best, jan.
i dont know if i am using this right, as i have never used a chat or
similar before. (ancient me).
i have had hep c for over twenty years now, no treatment or support, i
am an ex addict. (nearly 16 years ago)
Two weeks ago, my ex partner also hep c, died, overdose i assume, the
children,3, and i feel in limbo, and i feel frustrated.
i dont want to get sick. i want to live. live a long and happy life
for my children. My strain is 1 something, and i know from a viz to
the dr. last year that "i am not at the early stages, not at the
worst, but inbetween." Not that that is telling me a lot.
What treat ment is there?
My neice is 32, in australia, and about to start interferon, as the
government says they no longer have to wait for cirrossis (cant spell,
sorry). i am pleased for her, but a bit envious too.
i dont want to wait till i get really ill to have a chance for a cure.
is there anything i can do or take to help myself get a better chance?
i am in contact with no other person with hep c on a one to one. i
feel ignorant of my illness and isolated. Anyone got suggestions? I
am 44.
Jan
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Re: 1/2 the problem
Fri, April 21, 2006 - 6:49 PMoh, by the way, what do think of the new do, I did it finally. Pulled a handful of hair out 2 days in a row and threw in the bucket. I love it, it was so liberating, and it feels really cooool.... -
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Re: 1/2 the problem
Fri, April 21, 2006 - 8:38 PMHell, if I looked that great without hair... I'd keep it shaved off... LOL
Girl... You ROCK!
Hugs,
T -
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Re: 1/2 the problem
Sun, April 23, 2006 - 11:37 AMYour so crazy Sherril! You definately dont look like a troll honey so get a wig. A crew cut just isnt feminine. Do you like rubbing it? -
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Re: 1/2 the problem
Sun, April 23, 2006 - 12:15 PMto hell with the wig, and I hate to tell you Brock I have encountered more than my fair share of gents in the past few days that think its sexy as hell. crazy, perhaps, beats the emotional trauma of watching it fall out one handful at a time. yes as a matter of fact, it feels cool to rub it, oooooh, aaaah, lol. -
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Re: 1/2 the problem
Sun, April 23, 2006 - 4:18 PMI think you look great and salute you! Here in the bay area, there are bald hotties of both sexes abounding.
The way I handle ignorance is by trying to education. I attend seminars to pass information on, I give my phone no. out to people, I get paperwork and pass it on, I've given authorization for my information to be used in two research studies. -
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Re: 1/2 the problem
Sun, April 23, 2006 - 6:09 PMI try really hard Bev to be patient and giving. I have a number of people along the way that I have really reached out to to try and get them up to speed. It undoes me a bit that its about 50/05 though as to responsiveness. Many of them are just intrenched in thier lack of desire to be proactive.
Oh well, I am just cranky. You have a much more blooming and generous spirit than I do and thats one of the many things that makes you special.
Shaving my head was such a cool experience, its hard to describe, but thank you all for the words of encouragement.....
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Re: 1/2 the problem
Sun, April 23, 2006 - 4:36 PMI disagree. I like bald chicks. -
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Re: 1/2 the problem
Sun, April 23, 2006 - 6:10 PMthank you Stan, see Brock, your missing out on the allure but thats what makes the world wonderful, to each their own and all that........ -
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Re: 1/2 the problem
Mon, April 24, 2006 - 7:51 AM<<I have encountered more than my fair share of gents in the past few days that think its sexy as hell>>
Those are lucky gents, they get to see you from the ground up and how you move and talk. After I wrote that, I remembered the movie G.I. Jane (Cant remember the name of the actress); she looked hot as hell with a crewcut. So once again, I was wrong. I can admit it when I am. -
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Re: 1/2 the problem
Mon, April 24, 2006 - 10:25 AMThat was Demi Moore you silly boy, and I should have looked so good at 19, hardly compare now, that girl would look good bald, with spots and a flour sack. Little ole' me, I fair ok but hardly that goddess.
What I really learned though is that sexuality and femininity are not dictated by clothes, long flowing locks, make up or any of the accoutrements that society tries to tell us matter, it does appear to be an inner quality. Oh well, waaaay too deep for a monday morning. Frankly I am just glad to have it gone, its one less thing to be concerned about.
Funny, several people have asked me if I am going to grow it back, its so reflective of how people can't understand that life on tx is a day to day journey and I can't think past today let alone to December. It was cold as hell here today, snowing, and damn my head was cold, no wigs but hats may be in order.
Any way, hey Brock, how you feeling by the way, your past the half way mark, how's the squishies treating you? I have never gone this far on treatment, just curious if it evens out, gets worse or 6 of one half a dozen of another? -
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Re: 1/2 the problem
Mon, April 24, 2006 - 5:31 PMStanton, you like all chicks.
The week after I finished treatment I went and got a new do to celebrate the new me. The stylist tsk tsked the whole time that I would never do what was necessary (she knows me) and sent me on my way with written instructions and products. Never did it once. Sherrill, you have the right idea. I called the other day, back to short liza do for me.
Yeah Brock, how are you holding up? -
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This is the maximum depth. Additional responses will not be threaded.
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Re: 1/2 the problem
Wed, April 26, 2006 - 12:10 PMMy red cell count is up and I have been walking and mowing grass. I usualy get feverish and achy 24 hours after my shot, other than that, I'm feeling pretty good most of the time. The brain fog is gone now too, and I can think clearly again. I'm on week 30 now. -
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Re: 1/2 the problem
Wed, April 26, 2006 - 6:16 PMthats terrific Brock, so glad your feeling better and up and around and I too hopefully have smoother roads coming ahead -
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Ignorance
Sat, April 29, 2006 - 9:07 AMOn the subject of ignorance, there is a lady from the UK I have been coresponding with who has been receiving bogus information. Ive been trying to educate her, but it seems her mind is made up that hep c is no more dangerous than the common cold and that if she eats right and maintains a healthy lifestyle, she shouldnt have to worry about cancer.
It's fustrating when someone does'nt want to know the truth. -
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Re: Ignorance
Sat, April 29, 2006 - 10:13 AMI'm not privy to your conversations but I don't know that her decision makes her ignorant. Every situation is different and many hcv docs say treatment isn't necessary depending upon that person's situation, strain, age, duration of illness, historical speed of progression, life style, additude. If that is her case, a healthy life style would be the solution and all worry would do is create stress which would pull on the adreanal system which would tax the liver. We all have to make decisions, often very hard ones, on how we are going to tackle the dragon, and then deal with everyone else's opinion on our choices. The least we can do for each other is respect each other's choices without judgement. One of the great things about this tribe is that, while lots of tips and information are offered, people are supportive regardless of method of treatment etc. I'm not saying that you aren't doing that Brock, you are a big-heart guy and are trying to be helpful. -
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Re: Ignorance
Sat, April 29, 2006 - 11:23 AMYou have a pretty clear picture of me Bev. It's weired, I judge people for not being accepting of the beliefs of others yet I myself have a hard time accepting opinions which are different than my own. Once I get past this, I should be usefull in this tribe and other hep c groups I belong to.
Also, I dont believe in worrying myself, so I dont know where I get off thinking that someone else should be worrying. God forgive me! -
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Re: Ignorance
Sun, April 30, 2006 - 7:42 PMTake it back Brock.
I for one aren't going to agree that you don't offer to this tribe. Come on guy, you've given me tons of support, quite a few laughs, some intended, some not (he he). So....
Take it back.
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Re: Ignorance
Wed, May 3, 2006 - 9:58 AMOK, I take it back. I feel usefull.
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