Forum Replies Created
-
Oh, how refreshing to hear someone else say exactly my thoughts, YES, tell it as it is, no sugar coating! 
I said it on another forum and was howled down for it. FFS.
hmy:
Hi London Girl,
thanks for your input; Ditto here in Australia, re: Doctors just looking after “their” bit and no communication with other Doctors you are seeing etc; gives me the shits!
I don’t think many of them know the meaning of the word “holistic”; when I can save a few dollars I am going to see a N.T., have done in the past and found them very helpful,.
Just don’t have money right now; very grim on that front!None seem interested in post tx follow up either, fail or cure, there are many side issues.
ick:' /> Then there’s the fact we are getting on, us “Baby Boomers”, as you so rightly said, hopefully all the crap we’ve been through will help many in the future.
Another reason Doctors should listen to us, we just might have some valuable insight to help others, after all, we are the ones that have experienced tx, sx, etc.Good luck to you and I hope to chat with you more.
Cheers
Oldie Thanks again for your message, here’s wishing you all the very best!
Thanks for your advice DT,
however I do not have any of the latest technology; my PC is 10 years old, still running windows xp; so browser is now unable to access many sites and I do not have, Skype, a printer, a scanner, or even a camera!
I am on disability pension and hubby hasn’t worked for over 2 years, (no fault of his own), he would dearly love to be working; we have both worked since we were 14 years old, in fact I also left home at the same age and have looked after myself ever since. My story is one of poverty as a child, and then I went on to make my own mistakes, despite working so long, we have NOTHING! We rent our little unit, drive a 1998 car in dire need of attention and often have nothing to eat by the end of each fortnight. We live hand to mouth.
Enough said.
Needless to say, we are not, and will not be in a position to update our computer etc.
So I continue to try and research info. myself as much as I can, but I’m not a medico and don’t believe in self diagnosis.I just thought someone here might have heard of it and know something; sure didn’t mean for the “Doc” here to help me out, just asking in general. I have visited the “experts corner” etc, I’m not lazy, far from it. If I hadn’t followed up my own health re: Hep C, I’d be still “waiting”….well, I am still waiting actually, for Harvoni, due here Mid March.
Thanks for trying to help,
Cheers
Hi everyone,
thanks for your messages;
i cant type much had carpel tunnel surgery on friday, only one hand.
appreciate the info.I am going to see another oral spec. 16/2 re the bleeding tongue.
be back in a bit, when pain settles.
cheers
Hi Mike,
it sure is incredible how much the liver affects the whole body!
I have learnt so much during my journey with Hep C; It effects everything from the tip of your toes to the tope of your head and everywhere in between.
Like you I have so many things wrong with me, and all the aches and pains, cramps, joints, insomnia from hell, and my feet burn and ache like buggery, worst is first thing morning, and especially at night; they go bright red and I have to sleep with my feet out of bed, even in winter.Not to mention the damn “Brain Fog”, I have it bad, so forgive my spelling errors and poor grammar. I once had a quick, alert, mind, not anymore.
How are you feeling since treatment, many side effects?
– (sorry it seems to take ages to page up and down, or I would go back and look at your sig.)
I’ll be online for about 10 mins then have to go out to see our beautiful little grandson. I will check in again later or tomorrow.
Thanks for replying to me, much appreciated. Cheers
Congratulations on clearing the beast!
Hi DT,
you said it! I too have had to go from Dr. to Dr. “trying” to get the medical help and “support” I need and it’s exhausting. I have had to educate my current GP; she is a lovely, caring lady, BUT, doesn’t know much about Hep C and all the health issues it causes or exacerbates. If I hadn’t educated myself I would still be going from “pillar to post”.
It’s a constant battle to get side issues from Hep C, diagnosed and treated.An example is; my tongue has been bleeding for 7 months, there are a few tiny lumps where it bleeds from, (bright red fresh blood, about a teaspoon or two at a time), and it can bleed 6 times a day or once a day, but it’s constant, I’ve been to my Hep specialist, my GP, Eare Nose and Throat specialist, Oral specialist and I’m now being sent back to E.N.T.
The only thing that has been mentioned so far is Lichenoid, (Liches Planus), by the Oral specialist, but she said it didn’t explain the bleeding and left it at that?
All I know about it is, many things cause it, including Hep C and Interferon, and in the mouth it causes white patches on the tongue and inside cheeks.If anyone has any info on this or why my tongue is bleeding, please fill me in.
This is just one example of the many health issues I have that I cannot get an answer to.
Good luck to all, cheers Oldie
Hey Gaj,
I think you hit the nail on the head; the guests are gleening the infor. they want/need, but are not prepared to register and “give back” some.
I agree with you the wwider cross section of people would be a great benefit to all.
I don’t get why they would worry about being anonymous; they don’t have to use their real name, just as I and many others haven’t?
So far as the email address goes, they can just creat a “hotmail” or gmail a/c for forum emails only.Only a couple of others know I have HCV, not even out son knows, but that doesn’t stop me joining forums.
That’s my 2 cents worth.
Hi,
I’m new to this forum, but not to Riba.
It is the worst drug I have ever taken; I did 12 weeks of it with Peg/interferon and Simeprevir, and I failed treatment.I hope you stopped taking it; I doubt it would make much difference to your SVR now. Even the stats the Dr. put up show minimal difference.
The filthy drug nearly killed me, truly, I was heart attack/stroke material. Blood pressure went sky high, never mind Anemia, that wasn’t the hardest bit to deal with, though not nice, it was the racing mind, heart, shakes, and insomnia that nearly sent me over the edge. It’s taken me nearly 12 months to start to sleep for 5 hours again, and I still wake every hour or two!
I’m supposed to have it again with Harvoni, but I’m not touching it, no matter what, I’ll take my chances without it.Just my few cents worth; sorry to rave all over your thread, but mention Riba and I’m off!
Good luck with the rest of your treatment; I hope you feel a lot better soon.
Cheers!
Hi Re_Roll,
I am new here, but have been on many forums, Australian, and world wide, U.S. etc.
I love the fact you brought up the topic about having a section just for moaning, bitching, about anything we like!hmy: 
I know what you mean, that perhaps this area is for that, but in my experience on other forums, if you do have a rant about something and really tell it like it is, in the “patient forum”; you get comments back saying “you’re being too negative”, etc; when that shouldn’t matter, if you are feeling negative, shitty, whatever, it’s best to get it out, and it is all part of this horrid disease, and treatment/side effects, yet some still get narky if you do it. (I’m not saying that happens here, I’m new so don’t know.)
Some people are all about, being positive, (which is great when you can), “don’t say too much about the side affects, or you might put others off”. Come on, this isn’t the Teddy Bears Picnic, and we all know it, so let’s not pretend.
Myself, I want to hear all that others have to say, good or bad, it’s all information we need to know. As I’ve said, if you can’t cope with it warts and all, then you would just avoid the “Rant and Rave” section, easy.So, yes I agree, put up a section that is for bitching away as much as you want, however you want.
Then if others don’t like it, they don’t have to go there and read it, I know there are others that feel the same way.Anyway, I wish you all the best,
Cheers
