Tired of being sick

[aiuta]

Week 22 and needing to vent.  I am sick of tx.  So sick of being sick.  So sick of headaches, hacking, RibaRage, forgetting why I walk into rooms or what I am about to say.  Sick of body aches, depression, diahhrea, joint pain, itching, being in bed so much, fear of being with people because of what I might say (I've come up with some real winners and I've gotton to make some extra-special apologies while on tx).  I'm sick of pills and shots and dr's visits and trying to hide my illness with people because of their total ignorance and prejudice about Hep C.  I'm sick of nosy people at work.  I'm sick of anyone, who hasn't been through this treatment, telling me they understand.  I'm sick of feeling so sluggish and fatigued.  I'm sick of being unable to contribute to life at full capacity.  I'm sick of all the unknowns of this illness, that for all we put up with on tx, there are no guarantees.  I'm sick of being so angry.  I'm sick of trying to conceal that when I'm around others.  I'm sick of many things, but I'm grateful for you guys, because you understand and you've helped me make it this far.  I WILL stay the course because I know I'm not alone.  I know many of you who go through more pain and suffering than me.  Those of you who do this for a year (or 72 weeks) deserve a pair of wings and a halo.  Thank you for being here for me through this difficult time and thank you for listening to me and helping me make it through today.  

Aiuta    

P.S. To new people to the Forum, tx is NOT always like this.  Days 1-3 post-injection are hardest for me and this is day 2.

[aiuta]

joe10joe: I'm so sorry about your Mother. I wish you both all the best and glad my posting was able to help you.

Susan: It's ALWAYS so nice to hear from you. I'm glad your brain is clearing. That news gives this space cadet much needed HOPE. I TOO AWAIT THE DAY WHEN YOU POST THAT YOU ARE SVR. THESE NEW DRUGS MAKE ME THINK IT'S POSSIBLE. God bless you. A

sassblue: I SO understand not being able to control your speech muscles. It's embarrassing and humiliating at times. Thanks for the note.

THANKS SO MUCH YOU GUYS. ALL MY BEST, AIUTA

[aiuta]

joe10joe:  I'm so sorry about your Mother.  I wish you both all the best and glad my posting was able to help you.  

Susan:  It's ALWAYS so nice to hear from you.  I'm glad your brain is clearing.  That news gives this space cadet much needed HOPE.  I TOO AWAIT THE DAY WHEN YOU POST THAT YOU ARE SVR.  THESE NEW DRUGS MAKE ME THINK IT'S POSSIBLE.  God bless you. A

sassblue:  I SO understand not being able to control your speech muscles.  It's embarrassing and humiliating at times.  Thanks for the note.  

THANKS SO MUCH YOU GUYS.  ALL MY BEST, AIUTA

[sass_blue]

I have days where I feel like you do..today being one of them...i had a couple of days feeling so bad last week I considered stopping tx.  I ended up going to my doc and getting anti-depressants so hopefully they will help me to stay positive.  I am usually a very passive person, not since being on tx.  An elderly lady called me a %^$#@*( idiot last week because I parked where she wanted to park.  Normally I would just let it go but no!! I swore back at her then burst into tears!!  I was so embarrassed.  I really feel for you, it can feel so isolating and miserable on tx at times...Its bloody hard work

[Kalio1]

Good luck to you (and to her) hope things improve soon.

[joe10jo]

According to the Dr., this is simply a case of substance abuse.  Instead of taking one methadone, she's been taking two of them, etc..., etc...  He said he injected her with Narco.  Is that right?  Anyway, it's the drug that blocks the effects of opiates & he said she snapped out of it immediately.  I believe they're gonna keep her in intensive care for a few days so we'll see how it all goes.

[Kalio1]

Like I say, it is a painful business, adjustments should be made to her medications so she is not having some of these issues but she should not be yanked off all her meds, that is just torture. You dont want her to be in pain all the time, but you want to have her on dosages that aren't causing other issues like they seem to be doing now.

Sounds like the ambien could be causing the hallucinations, I have heard of that happening frequently.

What is her ammonia level now? That can really make you goofy if it is out of whack.

[susan400]

I'm so sorry.  I have had many days before feeling as you do.  I also got sick of hearing about people who had cleared.  I know that sounds terrible, but that's what I was feeling at the time.  It gets hard to cope with doesn't it?  I've had a reprieve from treatments over the past 6 mon.  This will be the case until somebody finds a study that they think I qualify for.  Not that I've got the maniac drugs out of my system, I can say that I'm guinuinely happy for those who have cleared.  One day, I'll be posting on here that I'M SVR!  I will, I will, will....   In the meantime, I'm hoping for you to be SVR.

Susan

[joe10jo]

And the drama continues....my mother was admitted to the E.R. this morning due to hallucinations, etc...  I FINALLY got to speak to the doctor who's prescribing the methadone to her (who is also the attending physician in the ER today)& needless to say, I got alot of insight!!  Apparently, everyone was right in my previous post - he was treating her for an addiction to dilaudid that I thought had been over for years!  All the time that she was acting crazy, we were all like, "well, it can't be drugs because there aren't  many dilaudid dealers in a town with a population less than 3000," which brings me to think she was getting it off the internet.  Who knows!?  Anyway, that doctor informed me that she hadn't clued him into the fact that she had cirrohosis - only recently did he find out & that's only b/c my aunt called and talked with his nurse.  I just can't believe she's been doing that **** all the way to the end!  Speaking of the end, he told me that she's probably gonna start going down hill very soon, with 2 weeks, 2 months, but no more than 2 years left.  By the way, all her problems as of now are due to the meds she's on (methadone, ambien, and valium) - all of which he's taking her off of, PRONTO!  Thank God!  And thanks for your response!  Everyone's very supportive on this site!

[Kalio1]

Aiuta has "acute" Hep C meaning she caught it in the first stages, meaning very early before it has caused many of the symptoms your Mom is coping with. Dealing with ascites alone can be very painful. You can see even in the early stages dealing with this disease is a trial. It also affects you mentally, and your Mom dealing with her level of damage probably has more cognitive issues than others with less damage. It is important she take her laculose and antibiotics as instructed. It WILL help her if she takes them right and MIGHT help to reduce her pain level.

I remember you saying from another thread that your Mom doesn't take her antibiotics like she should and I was thnking maybe that is because antibiotics can sometimes cause additional side effects and problems like yeast infections and thrush, etc. One thing she could do is add lactobacillus GG to her regimen when she takes the antibiotics. The antibiotics keep her from getting an infection from the ascites (ascites if swelling from a build up of fluid in your gut that can become infected which is why they give her the antibiotics) so it is important she take them. The lactobacillusGG (you can get it at the health food store or online) helps to keep the balance of "good" bacteria in her system so she won't have to suffer some of the problems from taking antibiotics for a long time.
Also if she adds Activa yogurt it might help.

I am so sorry you all are going through this. Her pain level is constant and very hard to cope with, I feel for her. I do not have the severity level of damage she does but I do have advanced damage and it causes all kinds of pains. Joint/bone pain is a big one, I have heard those dealing with ascites are in pain constantly, I hope she can find a solution to lower that pain level. Maybe between the pain medication and taking her antibiotics regularly with some lactobacillus GG she can find a less painful place to exist.

It is hard to relate to the pain unless you are the one with it, bear in mind she probably tries to hide it from those she loves too because she doesnt want to scare you any more than you are already scared.

[joe10jo]

Your post helped me understand what my mother's going through - so much so, that I just forwarded it to several people in my family.