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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?
while your at it-------- please post where you got your ideas on spreading hcv by sharing a HAIRBRUSH.
educate us all---------- please.
LOL!
educate us all---------- please.
LOL!
I guess everyone here knows this, but just in case--
HEP stages are shown by BIOPSY
CIRR stages are shown by CTP score
(as per jonis comment that her "biopsy" showed stage 3 cirrhosis)... not done that way.
(Glad you found a better doctor and your health did improve. Your first doctor was truly uninformed)
HEP stages are shown by BIOPSY
CIRR stages are shown by CTP score
(as per jonis comment that her "biopsy" showed stage 3 cirrhosis)... not done that way.
(Glad you found a better doctor and your health did improve. Your first doctor was truly uninformed)
Wow! This thread brought tears to my eyes ! When my husband was Dx last year I made it my personal mission to find out everything I could, as I still do. I have changed so many things about our lives so that when his treatment begins in a few weeks life will be easier for him.I have talked to EVERYONE I could that will be effected. I am so very sorry that some of you are treated like you described! LAZY !!! Wow I am so sorry!
The one little secret I have not shared with you is I have never been tested, I was scheduled twice and canceled because I am afraid to know the answer. I know my chances are slim but I have shared his razor and when we were younger we had some marathon sex {he's too old now lol} that could have resulted in well you know what I mean! I just can't imagine couples like Honey and Mr Honey both treating at the same time. I have a little girl.
Silvermoon, I didn't know things were that bad for you. If there is anything I can help you with , you have my number please use it!
While I'm running at the mouth here, my husband wouldn't even be treating if it weren't for you guys especially Mike, Indy, Rev,TnHep. Kenneage. If I haven't thanked you properly Thanks. And thanks for putting up with my **** when I was so angry about it all.
Wow.....that would be my longest post.....
Oh and Indy showed his ass on the other sight take a peek!
The one little secret I have not shared with you is I have never been tested, I was scheduled twice and canceled because I am afraid to know the answer. I know my chances are slim but I have shared his razor and when we were younger we had some marathon sex {he's too old now lol} that could have resulted in well you know what I mean! I just can't imagine couples like Honey and Mr Honey both treating at the same time. I have a little girl.
Silvermoon, I didn't know things were that bad for you. If there is anything I can help you with , you have my number please use it!
While I'm running at the mouth here, my husband wouldn't even be treating if it weren't for you guys especially Mike, Indy, Rev,TnHep. Kenneage. If I haven't thanked you properly Thanks. And thanks for putting up with my **** when I was so angry about it all.
Wow.....that would be my longest post.....
Oh and Indy showed his ass on the other sight take a peek!
Sorry to hear that they just don't get it!! Hey,,,you tried and now you know,,,You can depend on YOU from now on. If they don't want to hear about the disease or your bad days and they call,,,just tell them I'm busy! They will figure it out real quick. Get your stuff in order to get ready to go...You can do this Carol,,,You have us!!
Hey there! I know you are scared but yes,,,You do need to face this soon. People do this all the time and are negative,,,like less then 2% and if you are in that 2%,,,,you will start after Billy is on his way and doing good. I think you have nothing to worry but the test and just being done with it!
Good morning everyone - pacific standard time for me. Silvermoon; you mentioned that you're a caretaker, I relate to that. I haven't started tx yet but I imagine I'll get the same response as you. Caretakes are view as strong, resilient and low maintainence. Last October I tripped on a stair and broke my left foot, I live in a 5 level townhouse (29 stairs), my extremely lazy kids - then ages 17 & 21 viewed it as an inconvenience. At work they were sensitive for the first few days, everything was a struggle for me, part of the problem is I'm not used to letting other people help me it's very uncomfortable for me, but in this situation I would have welcomed it.
I have a caretake friend who had breast cancer, during her tx her husband acted like a pissy brat because she couldn't function at the high level he had grow accustom to, her own mother refused to believe she was sick.
Anyway, I don't really have any advice, it would be nice if people "got it" and were able to assist you, it's tough, I'll bet you've been there for them when they needed it.
I have a caretake friend who had breast cancer, during her tx her husband acted like a pissy brat because she couldn't function at the high level he had grow accustom to, her own mother refused to believe she was sick.
Anyway, I don't really have any advice, it would be nice if people "got it" and were able to assist you, it's tough, I'll bet you've been there for them when they needed it.
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