How do we make others understand? and OPEN Thread

[silvermoon]

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?

[new-sojourn]

Simply print out some facts om hep c.  Dr Cecil has a printable handbook.  I also printed out the medical definition of the symptoms of liver failure and cirrhosis such acitis, heptic encephalopathy, varicies and then find a few stories about what its like to die from liver failure.  Jack Slater has an ongoing series of waiting, w/o tx, for a transplant in the Seattle Times. _Print that out.  Tell them 12,000-14,000 people die from hep c in the old old US of A every year, and 3-10 million are infected and few know it.  That's twice the death rate as from AIDS yrly in the USA.  You gotta show them, not just tell them.

[jonihs]

I had my family come to this forum and read and ask questions if they wanted. All but 1 reacted very well. 1 brother thought we were all a bunch of whiners, but then I didn't have him in my life for 20 years, don't need him now.  Joni

[Califia]

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?

[RiverGal]

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

[silvermoon]

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

[tina-b]

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.

[derail]

the question is really difficult to answer
When I was diagnosed with type 2 diabetes some years back, the comments from family(some) were you don't have diabetes; you aren't on insulin and no amount of info could persuade them.
Now when I told them I had hep.C,Iwas apparantly looking for sympathy and wasn't sick
The family members you can't change but the one true thing is you will find out who your true friends are They will stick by you,and be concerned almost to the point of annoyance The others who won,t can,t or just don,t  try to understand will peter out
You also will have to learn to say no to the requests on your time because frustation AKA ribarage rules with no predetermined time schedule I know this is real tough to do and I missed a lot of time with the grandkids cause of it.
Through it all tho' try to keep a little humour on your side and pray that they(the ones who lnow you aren't sick) never get infected cause for sure then the world would surely end
Have a truly good day and keep smiling .It'll drive them crazy Daryl

[Amerabrit]

I'm so sory for your sad experiences with family and friends since dx, it's inconceivable to me that those close to you could act that way??  I hope you find comfort and support here and maybe your Drs office can recommend a local support group for you.

[tina-b]

That is a fact.

[bystander2002]

Some people understand, others dont. Thats just the way it is (thats what i found out). You can try educating people, the ones that arennt interested, leave them be.
I believe this disease is an eyeopener. Who your friends are, who they arent.

One thing I noticed you said. You said
"With 3rd stage cirrhosis"

)I have 3rd stage cirrhosis (stage c) so I look for others who mention that)

do you really have stage c cirrhosis? (cause stage c CANT do treatment, so I'm not understanding your post)

I'm thinking maybe you have 3rd stage HEPATITIS. (BIG DIFFERENCE)(very big difference.

[bystander2002]

ps- if you do have stage c, hang in there (and I hope you get your transplant soon) Take it one day at a time. don't let others stress you out.

[tina-b]

What is 3rd stage cirrhosis (stage c). I thought you either have  cirrhosis or you don't. How is it graded or staged and how many stages are there and what is the difference?

[DebbieDo]

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

[jonihs]

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

[jonihs]

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 (inflammation) and my liver is back to normal size.

[bystander2002]

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

[bystander2002]

heres a link may explain it better

http://janis7hepc.com/biopsies.htm#grading%20for%20cirrhosis

[bystander2002]

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

[bystander2002]

while your at it-------- please post where you got your ideas on spreading hcv by sharing a HAIRBRUSH.

educate us all---------- please.

LOL!

[bystander2002]

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)

[sher_]

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!

[Honey15637]

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!!

[Honey15637]

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!

[Astrolady]

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.

[silvermoon]

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!!!

[silvermoon]

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..

[bystander2002]

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