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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?
Yes, I know that people are uneducated when it comes to HEP C
The knowledge is out there......
My brother asked me when i first told him i had Hep C, "can I catch it"....and then last week we were talking on the phone and he asked me, is it heredity.......i got so pissed, i have been talking about this since Oct 2003, and more so since starting tx Dec 29.......and its still about him.........he is not interested cause it doesnt pretain to him......others are this way too........Just think about yourself, try to explain and if they care they will read all your info and educate themselves......IF NOT........think about yourself and with a positive attitude we/YOU will get through your treatment.....
Anyway, i believe there is no way you can really explain how you feel being diagnoised with Hep C or how you feel on tx.....its sort of like explaining to someone after you have delievered your first born.....and discribing what you felt.....its easily forgotten anyway after the baby is born......
the word Fatique is hard to explain..........and this is major during tx.........i wish you the very best .....Deb
The knowledge is out there......
My brother asked me when i first told him i had Hep C, "can I catch it"....and then last week we were talking on the phone and he asked me, is it heredity.......i got so pissed, i have been talking about this since Oct 2003, and more so since starting tx Dec 29.......and its still about him.........he is not interested cause it doesnt pretain to him......others are this way too........Just think about yourself, try to explain and if they care they will read all your info and educate themselves......IF NOT........think about yourself and with a positive attitude we/YOU will get through your treatment.....
Anyway, i believe there is no way you can really explain how you feel being diagnoised with Hep C or how you feel on tx.....its sort of like explaining to someone after you have delievered your first born.....and discribing what you felt.....its easily forgotten anyway after the baby is born......
the word Fatique is hard to explain..........and this is major during tx.........i wish you the very best .....Deb
I have to comment on both of your comments. Obviously you have been misinformed. I had complete liver failure in 2002. My biopsy showed stage 3 cirrhosis and I was diagnosed with ESLD (end stage liver disease) I was told by my 1st G.I. that I couldn't be treated and accepted his word. Then I found this forum and Mikesimon suggested I get a 2nd opinion. I did, and finished tx. the 7th of May. At 3 months post, still undetectable. I was 2b, with beggining viral load of 5 million. Joni
I just wanted to add that I don't " Qualify " for transplant anymore because my liver health has improved through liver freindly diet, and tx. reversed inflamation and my liver is back to normal size.
I just want to throttle these people for you. New-sojourn's suggestions are solid, and I can't think of anything calm or useful to add. Right now I'm just flooded with anger. Are they EVER going to get it, or with whatever scant energy you have left to you are you going to have to call new people into your life?
Cursed geography! Why do you live so far away?
Cursed geography! Why do you live so far away?
You asked "How do we make others understand?" The real answer is YOU DON'T. Unless someone has lived with it or thru it, they will NEVER get it.
Sorry, but this question strikes a nerve with me and my husband. He has gone as far as offering people a couple of his shots to help them understand. I am quoting him "Let me stick your ass a couple of times with the ****, then you will know."
Back in the spring, ( hubby started this round of tx in early feb.) we has a pretty bad storm and lost several branches and a couple of tops out of some trees. I can pick up branches but a 40 foot tree top is a bit large for me to carry. Well, it obviously needs to be sawed up with a chain saw. That, I am unwilling to try. I don't want to hurt me. HA HA.
My husbands mother lives in a different state but we talk to her every weekend. A couple of weeks ago (I am still fuming from it) she ask about the tree top clean up. Has he done it yet? I tell her "no he hasn't" and she say to me "Well, why not?" Well, DUUUUHHHH, BECAUSE HE IS SICK! She says to me, "Why doesn't he just cut a couple of limbs off per night if it is to much to do all at once?" Made me want to scream. She and I have had that conversation more than once.
The damn tree tops aren't going anywhere and they are laying on our land, they will keep. If someone doesn't like it, they can clean them up themselves or don't look at them.
Don't get me wrong, my mother-in-law is a saint and probably has 50 stars for her halo when she gets to heaven, but she just doesn't get it.
It drives me nuts with people attitudes and lack of knowledge about what these meds do to people.
My husbands boss said to him one day, "If someone pisses you off, you just go home." He told his boss, "I could stay and through computer moniters around the office if you prefer." His boss tells him that won't be necessary. So see, there are ways to explain these meds to people to make them understand.
Sorry for rambling on but these meds make me crazy too and I am not even taking them.
Sorry, but this question strikes a nerve with me and my husband. He has gone as far as offering people a couple of his shots to help them understand. I am quoting him "Let me stick your ass a couple of times with the ****, then you will know."
Back in the spring, ( hubby started this round of tx in early feb.) we has a pretty bad storm and lost several branches and a couple of tops out of some trees. I can pick up branches but a 40 foot tree top is a bit large for me to carry. Well, it obviously needs to be sawed up with a chain saw. That, I am unwilling to try. I don't want to hurt me. HA HA.
My husbands mother lives in a different state but we talk to her every weekend. A couple of weeks ago (I am still fuming from it) she ask about the tree top clean up. Has he done it yet? I tell her "no he hasn't" and she say to me "Well, why not?" Well, DUUUUHHHH, BECAUSE HE IS SICK! She says to me, "Why doesn't he just cut a couple of limbs off per night if it is to much to do all at once?" Made me want to scream. She and I have had that conversation more than once.
The damn tree tops aren't going anywhere and they are laying on our land, they will keep. If someone doesn't like it, they can clean them up themselves or don't look at them.
Don't get me wrong, my mother-in-law is a saint and probably has 50 stars for her halo when she gets to heaven, but she just doesn't get it.
It drives me nuts with people attitudes and lack of knowledge about what these meds do to people.
My husbands boss said to him one day, "If someone pisses you off, you just go home." He told his boss, "I could stay and through computer moniters around the office if you prefer." His boss tells him that won't be necessary. So see, there are ways to explain these meds to people to make them understand.
Sorry for rambling on but these meds make me crazy too and I am not even taking them.
I thought you were a drinker that went into acute liver failure.
(seperate deal there sweetheart)
glad you quit drinking (smart), glad your liver recovered (great news)
anytime you want to explain how its legal to give tx to someone with a ctp of 10 or higher
(or if you have any actual link to show that)---------PLEASE post it
(seperate deal there sweetheart)
glad you quit drinking (smart), glad your liver recovered (great news)
anytime you want to explain how its legal to give tx to someone with a ctp of 10 or higher
(or if you have any actual link to show that)---------PLEASE post it
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