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Avatar universal

Use this post for anything-I just need to say some stuff

Hi there.  I have 69 shot days left on my high dose regimen and these last few weeks are getting to me.  I've been on treatment this cycle since Jan. 5, 2003.  I've lost 25 lbs now.  No energy.  And get depressed, but I can't take anti-D's.  I'm hoping to be in remission when I get tested again in a couple of weeks.  Then, about mid-Dec., I'll start cutting back from the high dose to closer to a normal dose and start weaning back from the Riba.  You see, since I'm already on a higher dose than most and I'll be on extended treatment past the 48 weeks anyway, I don't think that my weaning process is an issue.  My doctor just wants to make sure I get undetected before I cut back any.  But, I'm so tired of feeling like **** and wanting to eat, but can't really eat much at all. My white cells are getting really low again, too.  Last month they were back down to 1.8.  Previously, they had dropped to 1.7 and my neuts were low, too.  After this being my 5th treatment, I'm really sick of treatments.  I want a life back.  Were it not for the prayers of my Christian friends and the Lord keeping me going, I'd have cashed it in a long time ago.  I pray to Him and do daily devotions every day and it helps me keep perspective.  But, the medicine and makes me get really irritable and whiney at times, which makes me mad at myself for feeling that way.  I try to 'get positive', but some days, that just doesn't work out in my head.  Take care everybody.  Susan400
19 Responses
Avatar universal
Hang in there-You're one tough human.
Avatar universal
Only 69 days left - you're almost there. I know the struggle is hard but hang in there. You do want this to all be over? And it will so that you can enjoy the rest of your life.  My prayers and thoughts are with you.
Avatar universal
I just came off of a 60 week treatment (13 months) Sept 27th. It wasn't a high dose but I didn't think it would ever end either. I kept telling myself:  ok you came this far just keep going....
I have been almost off tx for a month now and even tho its slow going getting back to my Ol' self I am proud I did it. You hang it and remember all of us are here for ya.
Avatar universal
Hi Susan400,

I just wanted to express my support and to tell you to whine away.  Anything to help or support you is the least we can do.  I am keeping you in my thoughts and am looking forward to the time you are undetectable and then SVR.  When times get rough, look forward to the future with hope and come to us for support.

Thinking of you and your trials, you are one tough person.
Steve
Avatar universal
5 times-------woooo neally that is closer to torture that tx. the bug should die because you are stubborn and must have a strong will to go on. i wish you good health after this tx, your sure deserve it. so you  have my permisson to whine if you want to.. i didn't get to svr either and i bitc--d loudly but not often. at least not on the bb.  again good luck.  roy
Avatar universal
Hi Susan,

You are a very brave woman! There is only a little bit left - nothing in comparison to what you have been through already. Good luck to you!

Foreign girl.
Avatar universal
Hi Susan
You know where the power is. Where we are weak HE is strong.


GOD BLESS
Bob
Avatar universal
Susan:  God NEVER puts more on us than we can handle.  You must be one tough chicky!  Keep the faith and know great things are ahead for you!  God Bless!!!
Deb
Avatar universal
Hi i'm sandi, i am so glad you have the Lord thru all this. He is our great comforter. Go to Him often and cry out to Him. He understands our pain. His heart has compassion on our suffering. He will be our strength. You know He is in charge of our lives if we have givin ourselves to Him and you are in the palm of His hands and nothing can change that. what is God telling you right now? listen to His voice and not that of the evil one.  (JOHN 10) "MY SHEEP HEAR MY VOICE AND I KNOW THEM AND THEY FOLLOW ME"..."A STRANGERS VOICE THEY WILL NOT FOLLOW". pray for wisdom. if you follow him with all your heart he will direct your paths. and nothing shall happen to you apart from His will and His gentle care and plans. psalm 91 says He shall cover you with his feathers, and under His wings you shall take refuge.... He loves you so much, draw near to Him and He will draw near to you... He will carry you through to the end. and your joy will be in Him not in anything this fallen earth has to offer. how ever it turns out in the end, you're his child and nothing can ever change that. "BY HIS STRIPES WE ARE HEALED". you know he has plans for your life right now, hcv or not. but i pray for your physical healing and for clearance comming up soon.  your life does need to go on. if this tx is keeping you from that, find out if God wants you to continue it or just trust him for your future without tx. you may be able to serve him better off the tx with the remainder of your life, which could end up being a ripe old age. only He holds our days.

i just started tx and am also afraid i won't clear. i have 2 strikes against me, that i am overwieght and over 40, which brings the odds lower. i have to believe that i am in God's hands no matter which way this turns out and i wouldn't be able to make it any other way. "so let us press on toward the goal for the prize of the upward call of God in Christ Jesus" (phil. 3:14). After all this isn't our real home anyway,our joy and ourlife are in the Lord. i will be praying often for you, sandi

Avatar universal
Thanks so much everyone for your prayers and encouraging words.  You all mean so much to me.   Blessings to you all, Susan400
Avatar universal
Susan dear,
You are so strong and you have obviously proven time and time again how determined you are to treat and get rid of this.  Stay strong!  With everyday, every minute you are getting closer to a huge, successful finish.

You're almost there, you are winning!! Keep praying, keep going.  Give yourself a lot of credit.  Give yourself big hugs.  You deserve it!!!
Avatar universal
OOOOOhhhhh........... I loved the Ayn Rand quote.  Very cool.
Avatar universal
Sorry to hear you are feeling blue and whooped...here's a couple verses that may brighten your thoughts:
"Quote of the Day"

" It doesn't matter how rocky the road may be. The road will clear if you keep walking." Like many others, I've had a lot of obstacles thrown in my path. Though some others give up, I will keep going till I reach the success that I want, even if it may be a difficult trip.

Monica Strihavka


***************************

"Thought of the Day"

" Do not let your fire go out, spark by irreplaceable spark, in the hopeless swamps of the approximate, the not-quite, the not-yet, the not-at-all. Do not let the hero in your soul perish, in lonely frustration for the life you deserved, but have never been able to reach. Check your road and the nature of
your battle. The world you desired can be won. It exists, it is real, it is possible, it is yours."
--- Ayn Rand

Got it from the Dragon    its a newsletter by LadyCat.............***@****

OHC
Avatar universal
Smoke a joint. just kidding, I recall you abstain.  Just remember, this to will pass.  Now whether its good or bad, the only constant is change.
Avatar universal
First, Susan400, you have my total admiration. You are clearly one strong person. Hang in there.

New Sojourn, you suggested she smoke a joint, which brings up a question I've had. My Dr. told me that if smoking a little pot helped, then "it's another tool in our arsenal and you won't get any complaints from me." My Physician's Asst, who is monitoring the daily stuff is against smoking because it is metabolized in the liver and he has seen one study where alcohol or anything else metabolized in the liver will actually make the meds less effective. I'm not a heavy smoker (anymore), but I'd like the option, esp. if things get bad. Does anyone else have any info on the subject?
Avatar universal
20-25%of "Western civilazation" smokes marijuanna whether its legal or not.  Many states, countries, cities consider it beneficial enough to legalize its use for medical use.

I'm ESLD b/hep c free, thanks to tx and otc meds and pot.  I have no problem w/my liver w/pot.  B/I have big time trouble w/junk food, pops, cheap candy, fried foods, caffine and too much red meat, never mind salty food.

Now, I don't need any studies to prove it made tx bearable, b/c it did.  I called it a toker's dream-no munchies no matter what.

I personally feel it was less harmful than ANY of the other meds mentioned here for sleep, anxiety, nausea, depression and non-exitent sex drive.  And I've already survived complete liver failure so don't have much liver left to annoy, never mind insult.

I rue the day I put down the pipe and lifted that wine glass to toast 'Good Health.'
Avatar universal
You don't have to sell me on the benefits of pot vs alcohol. (I personally rue the one weekend I tried IV cocaine--probably the cause of my current situation.) Plus, pot is a chemo drug, etc. for many people.  I'm pretty sides free at present and wondering what the next months will bring. However, this is week #2 for me and I am still feeling my way. Knowledge is power, right?
Avatar universal
There is a study (small) that had higher clearing and SVR rates for people that smoked pot.  I think it helps and eliminates the need for many of the other drugs to sleep, etc.  I smoked before, after and during and no one complained about screwed up blood work, if it did anything, pot must have helped since I cl'ed almost immediately.

It works, it helps and some places its even legel for medicinal puposes.  I'm completely in favor of pot for sdx instead of more injections and/or pills.
Avatar universal
I asked my Dr. about Marinol(pot in a pill) for sx. and he told me that for some people it can be good, but that it is a depresant. I have never known a depressed pot-head personally, but the pill might be different. However in my state it is legal to prescribe this for HCV. But it is expensive. (what isn't)  Joni
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