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How do we make others understand? and OPEN Thread
We have had alot of discussion on here about sides of the disease, sides of the Tx, sides of the Tx for the sides..etc..
I am looking for SERIOUS suggestions here..because I am truly at the end of my rope...
HOW do we/I make family/friends UNDERSTAND how serious (1) this illness is, (2) the Tx is, (3) how bad the drugs are, (4) how bad sides can be, (5) complications and lasting effects.
With all the medical knowledge that I have, I just cannot seem to make them understand. They act like I have a cold and it's nothing!
It seems that no matter how I try to explain it to them, they say stupid stuff like," Oh just take your medicine and you'll be fine in a couple months". or.. "You need to go get a job."
With 3rd stage cirrhosis, and labs that look like several months into tx with the low platlets, high clotting time, low rbc's...I am weak,exhausted and I can't do much of anything.. I feel like this before I have any of the drugs in me, so when I start, it will surely be much worse.....
I qualified for SSI in May, in less than 3 mo. on the FIRST try!! Anyone who has ever tried, knows it is not easy to get SSI.
I have always been the caretaker type, always doing for everyone else, never making any time for or demands for myself, but always making many DEMANDS ON myself, no matter what it took. and YES, THAT is MY fault! and now, when I really need some help, I can't seem to get any.
My meds are in the fridge, but I can't start yet,and frankly, I'm about ready to just F*^@*#*^ give up! Any ideas?
I am looking for SERIOUS suggestions here..because I am truly at the end of my rope...
HOW do we/I make family/friends UNDERSTAND how serious (1) this illness is, (2) the Tx is, (3) how bad the drugs are, (4) how bad sides can be, (5) complications and lasting effects.
With all the medical knowledge that I have, I just cannot seem to make them understand. They act like I have a cold and it's nothing!
It seems that no matter how I try to explain it to them, they say stupid stuff like," Oh just take your medicine and you'll be fine in a couple months". or.. "You need to go get a job."
With 3rd stage cirrhosis, and labs that look like several months into tx with the low platlets, high clotting time, low rbc's...I am weak,exhausted and I can't do much of anything.. I feel like this before I have any of the drugs in me, so when I start, it will surely be much worse.....
I qualified for SSI in May, in less than 3 mo. on the FIRST try!! Anyone who has ever tried, knows it is not easy to get SSI.
I have always been the caretaker type, always doing for everyone else, never making any time for or demands for myself, but always making many DEMANDS ON myself, no matter what it took. and YES, THAT is MY fault! and now, when I really need some help, I can't seem to get any.
My meds are in the fridge, but I can't start yet,and frankly, I'm about ready to just F*^@*#*^ give up! Any ideas?
Hello.. I am going to comment to you first because of your posts about cirrhosis..
Perhaps you need to educate MY doctors??? According to them, 4th stgae cirrhosis End stage liver disease.. In Jan, an ultrasound discovered gallstones, some liver changes, an enlarged spleen.. My platelets were 90k.. I haven't had a biopsy because it is insafe to do one on me.. My clotting time is 38.9.. the high norm on the test used is 32, my platelets are 80k, RBC's are down to 3, I was given 6 bags platelets, 2 of plasma, plus VitK.. right before a scheduled biopsy, to normalize levels.. there was absolutely no response, so the radiologist said no biopsy...too risky.
I have re-read your posts, and I really think YOU are misinformed.. Hepatitis NOT staged by biopsy..
Either you HAVE HepC or you DON'T.Viral load and genotyping are done, but they only matter as to length of treatment and SVR..
.Biopsies help to diagnose fibrosis/cirrhosis and the stages and scales are used to show the amount and degree of damage to the liver!
Perhaps YOU need to be re-educated. I do know that I have a medical background, and have been learning about this disease for 4 yrs.. I ALSO KNOW that my doctors have very prestigious, legitimate medical degrees.. WHERE IS YOURS?????
With the advances that are being made, Many are able to be treated who previously weren't considered treatable!
I don't know WHO you are, but those on this site are not a bunch of ignorants who just fell of the dmn pumpkin truck, and I take a huge exception to the tone you used with a couple of folks in particular.
YOU have made light of the question I posed, just as much as those in my life don't seem to get it..
I am not a frickin idiot, nor are the opthers on this site, and it is not as simple as,'take one day at a time'.. and I really think you owe APOLOGIES to a couple of folks.! If you can't be constructively helpful and supportive .STEP OFF!!!
Perhaps you need to educate MY doctors??? According to them, 4th stgae cirrhosis End stage liver disease.. In Jan, an ultrasound discovered gallstones, some liver changes, an enlarged spleen.. My platelets were 90k.. I haven't had a biopsy because it is insafe to do one on me.. My clotting time is 38.9.. the high norm on the test used is 32, my platelets are 80k, RBC's are down to 3, I was given 6 bags platelets, 2 of plasma, plus VitK.. right before a scheduled biopsy, to normalize levels.. there was absolutely no response, so the radiologist said no biopsy...too risky.
I have re-read your posts, and I really think YOU are misinformed.. Hepatitis NOT staged by biopsy..
Either you HAVE HepC or you DON'T.Viral load and genotyping are done, but they only matter as to length of treatment and SVR..
.Biopsies help to diagnose fibrosis/cirrhosis and the stages and scales are used to show the amount and degree of damage to the liver!
Perhaps YOU need to be re-educated. I do know that I have a medical background, and have been learning about this disease for 4 yrs.. I ALSO KNOW that my doctors have very prestigious, legitimate medical degrees.. WHERE IS YOURS?????
With the advances that are being made, Many are able to be treated who previously weren't considered treatable!
I don't know WHO you are, but those on this site are not a bunch of ignorants who just fell of the dmn pumpkin truck, and I take a huge exception to the tone you used with a couple of folks in particular.
YOU have made light of the question I posed, just as much as those in my life don't seem to get it..
I am not a frickin idiot, nor are the opthers on this site, and it is not as simple as,'take one day at a time'.. and I really think you owe APOLOGIES to a couple of folks.! If you can't be constructively helpful and supportive .STEP OFF!!!
THANK YOU ALL for your caring and support and responses. THAT is exactly WHY I posted the question.. to SEE what others have to say, advise to offer, thigns that worked for them. I have come to know this to be a very caring and sharing group of folks. The situation I am in is complicated and there's not an easy solution.... well, there IS actually, but the family members who could be of real help, are a bit on the self absorbed bent..
I appreciate everyone of you for taking time and caring enough to answer me. You are truly AWESOME beautiful people!! Love all of ya's..
I appreciate everyone of you for taking time and caring enough to answer me. You are truly AWESOME beautiful people!! Love all of ya's..
I'll say again (and this includes YOU this time)---
some people get it, some dont.
you say:
I have re-read your posts, and I really think YOU are misinformed.. Hepatitis NOT staged by biopsy.
SILVERMOON, that is idiotic. Hep is staged by biopsy./ You are ann IDIOT.
You are a real IDIOT.
LOL
have a good day, since its OBVIOUS you don't have stage C
PS----I am on the tp list at Stanford. My doc is Emmet Keefe
(maybe your smarter than him. LOL
http://www-med.stanford.edu/shs/txp/livertxp/HTML/selection.adult.html
some people get it, some dont.
you say:
I have re-read your posts, and I really think YOU are misinformed.. Hepatitis NOT staged by biopsy.
SILVERMOON, that is idiotic. Hep is staged by biopsy./ You are ann IDIOT.
You are a real IDIOT.
LOL
have a good day, since its OBVIOUS you don't have stage C
PS----I am on the tp list at Stanford. My doc is Emmet Keefe
(maybe your smarter than him. LOL
http://www-med.stanford.edu/shs/txp/livertxp/HTML/selection.adult.html
I soooo understand the feelings that you are going through. It's almost like everyone around me is caught up in some kind of denial...like if they can't SEE the liver like they could SEE some skin fungus eating away at the flesh, then it just something that they don't take seriously.
It's hard for others around me to understand that I sometimes feel like hell...they would rather think I choose to be "lazy" for a day of two. My belly and feet swell, but people think it is weight gain. I can only imagine how it will be when I start tx. I was hoping someone might take the time to go to the dr. with me and listen, or at least read a little literature on HCV, but denial and ignorance seem to be the more pleasant alternative. But, hey...I think the dog understands my fears...he seems to be the only one who has the time and inclination to sit and listen.
I'm typically a very positive, determined person...but this is scaring the bejeebies out of me. It would be nice to have someone in my little world that understood. I've always been the supportive one...now I need somewhere to lean. Perhaps I SHOULD become a whiny person...then maybe someone would "get it."
Wow! I thought I was the only one feeling this way. How pretentious of me!
RR
It's hard for others around me to understand that I sometimes feel like hell...they would rather think I choose to be "lazy" for a day of two. My belly and feet swell, but people think it is weight gain. I can only imagine how it will be when I start tx. I was hoping someone might take the time to go to the dr. with me and listen, or at least read a little literature on HCV, but denial and ignorance seem to be the more pleasant alternative. But, hey...I think the dog understands my fears...he seems to be the only one who has the time and inclination to sit and listen.
I'm typically a very positive, determined person...but this is scaring the bejeebies out of me. It would be nice to have someone in my little world that understood. I've always been the supportive one...now I need somewhere to lean. Perhaps I SHOULD become a whiny person...then maybe someone would "get it."
Wow! I thought I was the only one feeling this way. How pretentious of me!
RR
Thanx all of you! You are all so kind.. and I Hated to ask this on here, I hate to vent here..but I feel as though I am going to slide down the slppery slope soon and thought mayebe there was something that I haven't tried, short of jack- slapping them upside their heads!!
Thing is, I HAVE given each of them a packet of printed material, so they'd know what I was up against and so they would know what to expect, how to help and be able to ask questions... I am not sure any of them have really bothered to read any of it. and, While I UNDERSTAND that it is hard to understand..and that they are NOT used to seeing me sick or weak..and they KNOW that asking for help is something I just don't do.. ALL these people have known me well for years, some my whole life, and they know that I have always had more energy than 15 people and have always worked circles around everyone, without complaint, have always done physically hard work, and could lift twice my weight (and I am not a big person, I'm 5'2")..but for some reason, it seems that they think I must just not want to work, or that, I have no right to maintain any dignity or autonomy. One suggested, that since money is tight for me, that I should just move in with someone, anyone, a stranger.. even if I have to just sleep on the floor. Yeah.. that would work!! I am afraid that they won't get it, until it gets to the point that it's too late.
I guess I will try once more, but it seems I spend all my time and energy, just gathering and printing out info people who just can't be bothered! I am just TIRED!
Ya'll are great!!.. Thanx!!! have a great weekend! Carol
Thing is, I HAVE given each of them a packet of printed material, so they'd know what I was up against and so they would know what to expect, how to help and be able to ask questions... I am not sure any of them have really bothered to read any of it. and, While I UNDERSTAND that it is hard to understand..and that they are NOT used to seeing me sick or weak..and they KNOW that asking for help is something I just don't do.. ALL these people have known me well for years, some my whole life, and they know that I have always had more energy than 15 people and have always worked circles around everyone, without complaint, have always done physically hard work, and could lift twice my weight (and I am not a big person, I'm 5'2")..but for some reason, it seems that they think I must just not want to work, or that, I have no right to maintain any dignity or autonomy. One suggested, that since money is tight for me, that I should just move in with someone, anyone, a stranger.. even if I have to just sleep on the floor. Yeah.. that would work!! I am afraid that they won't get it, until it gets to the point that it's too late.
I guess I will try once more, but it seems I spend all my time and energy, just gathering and printing out info people who just can't be bothered! I am just TIRED!
Ya'll are great!!.. Thanx!!! have a great weekend! Carol
Cirrhosis is not all the same. theres 3 stages (a,b,c)
when I had compensated cirrhosis I got to try treatment. (But people with decompensated cirhosis cant (it would kill them)
hepatitis has 4 stages (1,2,3,4).
Stage 4 hep = cirrhosis STAGE A
once someone is told they have stage 4 hep (stage A cirrhosis), then,,,
they use another scale (pugh score) to track damage.
pugh score shows what stage of cirrhosis your at (a,b, or c)
stage a cirrhosis isnt really very sick
stage b cirrhosis is starting to have problems (and can get referred to a tp center)
stage c cirrhosis needs a transplant ASAP
when I had compensated cirrhosis I got to try treatment. (But people with decompensated cirhosis cant (it would kill them)
hepatitis has 4 stages (1,2,3,4).
Stage 4 hep = cirrhosis STAGE A
once someone is told they have stage 4 hep (stage A cirrhosis), then,,,
they use another scale (pugh score) to track damage.
pugh score shows what stage of cirrhosis your at (a,b, or c)
stage a cirrhosis isnt really very sick
stage b cirrhosis is starting to have problems (and can get referred to a tp center)
stage c cirrhosis needs a transplant ASAP
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