I cant have treatment and need understanding from family and none to be had.

Hi every one.  Im new to the boards but so glad I found this place.  I was treated 5 yrs ago for chronic hep c.  Ive had it for like 20 yrs.  The treatment caused me to develope a severe lung disease that almost killed me..I can not be treated now because the drs know Ill get that lung disorder full blown again.  by the way I now have chronic sarcoidosis.  I take pain pills,  lorazepam 1 at night to help with rest when I think I need it. I take prozac and estrogen for total hysterectomy.  My mom just today again called me a drug addict.  she doesnt understand that I have no energy or stamina at all off them.  I have quit them about 4 times and given it months to get better feeling.  It just doesnt happen. The feel better never seems to come.  So I go back to taking them again so I can enjoy the day to day things that others enjoy.  My mom says Im in denial and dont need the pills and its a sin and if its not for the pain every time when I take it then I should just know Im not going to feel well and rest a lot.  I cant stand the thought of resting a lot the rest of my life.  I am so hurt that she doesnt even try to get it.  The tired a hepper feels is not the tired someone else feels.  plus the sarc drains me as well.  and the steroids they give me for that drives me through the roof.  Its just been so hard.  Now shes back on the kick that I am a drug addict in denial.  she just wont let this rest.  All I know is that If I can have a bit of energy for the taking of a pill...Im sure gonna do it.  I cant spend my life on the couch.  any advice on how to handle this.  thx

[GwithHepC]

Tabetha:

I am so sorry you are not getting the support you need from your mother.  I understand how hard it is to not have your family support you; I am having some problems of my own on that front.  From what you described you certainly don't sound like a drug addict to me.  You should be proud of yourself for doing what you need to do for yourself despite how hard it must be for you to disagree with your mother.  I am sure your mother loves you very much; often times people have their own issues and find it difficult to see things from a different perspective. Please continue to take care of yourself and have faith that one day you will feel better.  Continue to be true to yourself and stay strong.  I know it isn't the same, but there a lot of very caring people on this board who will understand some of what you're going through and will be like a family to you.  You have my prayers and I wish you all the love and support in the world.

G

[meandhepc]

Welcome,

I am sorry for your troubles, may be you should have your mother go with you on your next doctor visit, so she can hear what the doctor tells you. Also, print up what you can on your dx's and leave it where she can find it to read.
Not much, but hope it helps......

[Lill]

I'm sorry to hear what you are going through.  It is hard for others to understand how it is that we feel.  You seem to have more to go through than others.  It is the sarcoidosis that robs your breath and steals your energy.  There are newer antidepressants on the market that may give you that energy boost you need.  We've come a long way since prozac.  If the combo you take helps get you through the day then that is what you need to do.  It isn't necessary to take all the advice we hear, even if it does come from Mom.  

We have a disease that when mild is impossible to see and therefore others can't feel for us.  Perhaps (and I know this is hard), Mom is not your best confidant.  Sometimes, and more often than not, some people just lack empathy.  They are unable to place themselves in our shoes.  I hope you find the support you seek here on this board.  Maybe you will find you have less need to share what you are going through with your mother and subsequently find less criticism forthcoming.  One can only hope. Lil

[big chuck]

I also have cronic (chronic) lung problems,among other things. My mom sounds a lot like yours. She was a nurse way back when (she's 76), and says painkillers are only to be used temporarily.   Maybe because she was addicted to them way back when. People sometimes have strange ways of rationalizing! If I were in your situation, I think I wouldn't let mom know EVERYTHING. Maybe take her with you to GA appt. let her ask the doc about being addicted, see how he handles it. Maybe ask her to talk to a therapist together. Try not to be angry with her. Ask her to try not to be angry with you. Tell her how much you need her love and support. After all, you're only trying to hang around a little longer. Is that too much to ask?
  I've suffered through severe depression,and it SUCKS! I hear you.....  If it gets too much to handle,call a helpline. Talk to people on this forum, they are all trying to cope, just as you  are. I think those who are able to do treatment are very brave, but for those of us who can't it's very scary. Be brave, and thank GOD every morning, for he has given you another day.
  MY 2 CENTS WORTH    BIG CHUCK

[cindee]

Welcome, I'd like to say first, that I am so sorry to hear of your problems. I am 2wks post tx, and from day one my Mother questioned everything...my doctors (all 3)and the combo tx. I took her books to read, but she wouldn't even look @ then, she lives 45 minutes away and has been to see me 1 time (dad too), in a yr. My liver doc put me on lortab for pain about the 4th month. SHE HAD A FIT!!!!! Now granted she takes methodose for her back. I know she has to have it...she has degenerated disks and arthritis in her back. But what I can't understand is why she questions me and then won't listen to the answers!!!! I have had a rough time on tx, which my liver doc says is normal. My Mother has always been so caring...this I don't understand! She even tells me I go to this forum too much and that I should forget about the Hep C....helloooooooo Mom's, it's hard to forget when the pain is so great. You hang in there and do what ya have to do! Hope this note finds you feeling good. prayers to you and all. ~Cindee~

[terriri]

I don

[Tweetie2]

Please don't take this wrong but in a way I can understand "all" your moms. Mine was killed in a nursing home incident almost 2 yrs ago. All they want is the best for you, you're their kid. Probably unknowing (most of them) what the drugs are doing to your body, they just want you to be well. Of course, we know that's not possible at this time with the HepC and all. I know this.....a couple of the regular md's I've seen have told me that EVERY pill I stick in my mouth is filtered thru the liver. The mother that's a retired nurse knows this! When your liver is compromised, you're just adding more work for it to do by putting alot of drugs in there. There is alot of herbals out there that can ease the work on the liver but not overload it. Milk Thistle, for one.  All I'm saying is try to understand that they just want you to be well and are feeling helpless because they can't help you. So the next thing is to be judgemental. Sorry, we all have this "human" trait.

[layla]

Hi glad to see you made it up here.You will get  a lot of support here and there are so many experiences people share here. I hope it's helpful for you. Sounds like your in a difficult situation and you do not want to alienate your Mom. Maybe just being around her less will help. Mine ia a problem to, for other reasons but that's how I handle it. I do see her but I make sure I am in my best mood and I also mentally prepare myself remining myself how she is before I get there and planning on expecting here to be her "typycal self". It makes it a bit easier for me to handle. You mentioned you were treated 5 years ago.I just wonder if you have been under the care of a hep doc currently. Things change in 5 years may be there is a way to deal with it now. Of coarse I don't know this I just wondered. Hope things get better for you. LL

[layla]

Hi glad to see you made it to the top. People here have been very supportive. It sure helped me and I hope it helps you. My mom to can be difficult, for different reasons, but still she is hard to deal with. Like you I don't want to alleinate her either. I often try to spend less time with her and when I do plan to see her I prepare myself mentally ahead of time knowing how she is going to act and then I try to see her when I am in good moods only. This helps me to deal with her. She is not a bad person just hard to deal with. I see you were treated 5 years ago. Are you under a hep docs care now? Things change in  5 years so I wonder if there are ways to deal with the problems you had then. Even the drugs are different now. Just wondering. LL
Hope this isn't posted twice. It dissapeared the first time I posted it.

[GreatBird]

>>My mother and I dont see eye to eye. She finds so much fault with me and has never taken my illness very seriously. I cant however just not go around her as my sister died recently and my brother died 9 yrs prior to my sister. I know its taken a toll on her and she needs me.<<

Family situations can certainly get complicated. You have received some excellent advice and I don't have much to offer, however, I would like to say that you cannot allow her to judge you. It is not her right. That doesn't mean you can't be with her, although it can be tricky. You need to decide ahead of time what you can say to change the subject, or minimize her criticism. (Even an "I'm not going to discuss that with you" will do). You also need to set up a script to handle family who are responding to things she has said about you that aren't true. ("Well you know how mother is..." or whatever will work). Do not be defensive. People see that as weakness.

And don't see her or talk to her when you aren't up to it. Its not good for your health. If she isn't going to help, then you have to mother yourself.

[Tabetha]

I want to say a great big thank you first of all.  You have all been more than helpfull and kind.  I have really needed just to be somewhat understood.  and I feel I have found that here.  My mother and I dont see eye to eye.  She finds  so much fault with me and has never taken my illness very seriously.  I cant however just not go around her as my sister died recently and my brother died 9 yrs prior to my sister.  I know its taken a toll on her and she needs me. I just hate for her to start the I am a drug addict rumer again.   She told the whole family that I wasnt that sick and it was just an excuse to take the meds.  It hurt more than words can say.  Im just afraid shes gettin fired up again.  and hate for the ones I love to hear things about me that are not true and that are bad.  I dont understand why she is this way but has been like this with me most my life.  sister was her favorite.  Any way.  I have been so encouraged by all you helpfull and kind comments and will return often to this board and look forward to the friendships I know Ill be making.  God bless each and every one of yall.  Tabetha      :)

[justhinkn]

Tabetha, I'm sorry to hear of all the pain you're going through.  Dealing with difficult family members (especially your mom) is difficult even when a person is healthy!!  Has your mom always been like this or has this accelerated after the loss of the other two kids?  Is she herself on some type of medication?  Like someone else said above, just because they're family doesn't mean they're right or loving (I'm paraphrasing that of course :-)  and may mean that you need to distance just a little to allow some sanity in your life while you recoop.  And not that this is easy to do, you also have to get some perspective that your mom probably has a "few" issues that she needs to deal with but while she's dealing with "yours"...she doesn't have to deal with her own.  I bet we'd all be surprised to find out the "full" story on a parent's life--it could be enlightening to you on why she does what she does--but you need to focus on your own health right now.  Also, you really can't control what she tells other family members but you have control over how you react to it.  If your mom has always been critical and talks about her kid in a deflamatory manner, I can bet you that your relatives probably already know that she has the tendancy to do that and filters that information.  If you are close to any of them and can have a one-on-one with that person about your situation you might find out that you're not perceived the way she's portraying you.  And if they do...well "to heck with them" because you know how you're living your life.

Almost done 2, I tried to look up what methodose was.  What little I found had it tied to something like methadone..maybe valium..didn't sound like it was a "light" drug (maybe you can ask your doctor).  You seem to state that her behavior is different than it use to be--maybe her pain and/or her medication has something to do with that or her tolerance to her drug has increased.  Of course, going through what you're going through too has weakened your emotional tolerance (and why wouldn't it).  Maybe it's time to look at "her" meds... just a thought.

To both of you, I guess I just had to add my two cents worth, for what it's worth.  I know how the "mother factor" can hit all the soft emotional buttons.

[tubs46]

sorry for lack of support.  My family was very understanding.You do need to understand that the Drs. are, 9out of 10 times, just going to give you another pill of some kind.  That was my down fall at week 12 of tx when all the stuff they were giving me put me in the hosp.  I had to quit the tx and it's been 3 weeks and the sides will still come out of the blue and knock me down.  

This board and may more would have helped me and I wished that I had found them before last week.

The secret here is to be honest and everyone here will give you all the help they can, and as you see most have been the skipper of the same boat your in.

Take care and of yourself

[mumovsix]

i am really sorry to hear you are going through this i am to going through a situation with my family i am relitivley newly diagnosed i contracted hep c through surgery the hardest thing i did was tell my family each reaction was different my dad however refuses to acknowledge it at all i try in vain to talk to him about it but he doesnt hear me i dont want his sympathy i just want his support . He has looked on one web site and belives that is all he needs to know sometimes i want to scream with frustration i want someone to understand what it feels like but i know if you havent got it you cant possible understand people cant see it there for they dont understand . Some days its ok i feel incontrol and at ease with myself but other days i feel totally out of control and could scream help i expect it does get easier time will tell

[tubs46]

Sorry for the lack of support.  I tried the tx and after 12 weeks with all the pills and ad the dr. had me on I ended up in the hosp.  I have always trusted the Dr. but now if they want me to take something I make them talk to me about why.
Good Luck

[MajNeni]

Sounds like your doc has this worked out pretty well, finally!  Hang in there, sounds like you're in good hands.  Good luck for a smoother ride now!
Maj Neni

[giddyup]

By the way I'm currently taking Pegasys combo,Lexapro ,Protonics
(for stomach acid) daily.As needed I also take Vicodin (aches),Compazine(for nausea) and Ambien(sleep).All this is working for me now.

[giddyup]

Can you please tell me which combination of pills put you in the hospital? Sorry you had that experience. I agree, it's good to what the meds are doing. Thanks

[giddyup]

Thanks MajNeni, I hope so!